Keeping up with Kim...

Is 50 the new 30? Sometimes it feels like the new 80.

2011-12-21T16:13:00.004-06:00

In the last two weeks, I have not seen any more doctors but I've made a trip to the hospital for further blood work and blood cultures. I am still waiting on the culture results but my white count went from 12,000 back up to 15,000 since Dec. 7th. Hopefully they can pinpoint the source of the infection soon, as I've been feeling flu-like for two months now. I should know in the next few days whether there is an infection in the blood stream.

In addition, I am scheduled for another round of MRIs to look at my brain and cervical spine. My doctor seems to feel that possibly something is laying dormant since my last major surgery and all the infections that followed. If those scans provide no answers, he would like to look at my kidney and liver to see if there is any sign of metastasis. My internist feels that you can get temperatures and unusual labs when you have cancer either growing or moving in your body. Say your prayers and cross your fingers this is not the case. This is another reason I am opting to wait until after the holidays to get the MRI scans down. I'll get them done on Dec. 30 and I should know shortly after the new year the results.

I'm still waiting for an appointment to meet with the transplant coordinator at Northwestern. I spoke with my brother Jeff, who has also received a kidney transplant. Four years ago when he met with their transplant team, he was told you cannot go directly to a transplant process. You must do at least a month of dialysis. He searched four other hospitals around the country who also told him the same. He finally ended up doing his transplant in Colorado, where they would do it with a pre-arranged donor. Hopefully things have changed in the last four years as my doctor doesn't feel I can tolerate the dialysis process.

We'll also plan to have my skin cancer checked, in case that could possibly cause white blood counts to increase and the symptoms I am experiencing. Back to the blood results of Dec. 7, when my white count had gone from 21,000 down to 12,000, I was also found to be deficient in Vitamin D. The idea that the pituitary gland was causing the problem was proven wrong. A Vitamin D deficiency can cause you to feel weak, achy, have difficulty with concentrating, cause headaches, and basically seasonal affective disorder systems. Living in the Midwest in the winter of doom and gloom, I am now taking a Vitamin D supplement.

On a happier (?) note, I recently celebrated my 50th (half-century mark) birthday and I am feeling very old. Celebrating, on the other hand, has been great fun and I can really get used to that lifestyle. Prior to my birthday, I met with 12 of my sorority sisters at Maggiano's and we went into an Italian food coma. The dinner, drinks and great company made for a wonderful evening. Thank you, girls, for all my wonderful gifts. I wear the necklace almost daily and get compliments all the time.

In addition, I was thoroughly surprised by a large group of neighbors and friends at our supposed holiday book club-turned surprise Happy 50th. Another great evening of my favorite snacketizers, drinks, and a delicious assortment of cake pops. Everyone shared their thoughts, jokes, and sayings on aging (e.g. "I'd rather give up sex than lose my glasses") and games you play when you get old (e.g. "Hide and go pee"). Again I was treated to many wonderful gifts, jewelry and gift cards, but most importantly, the love I felt from all my close friends was so nice. A big thank you to Suzanne and her helpers Angela, Karin, Brenda and Corrine.

It has been great seeing everybody at all of our holiday parties and gatherings this holiday season. I just found out that my friend Sheila, who I am dictating this to currently, will be in town for a few days. In addition to getting together with her, on Christmas Eve we'll be going to church and then starting our Christmas tradition. It's 24+ hours spent with the same group of people, beginning with Christmas Eve when we have a formal dinner with my cousins and my aunts and uncles. We do a gift exchange with names we have drawn for the kids and basically everybody visits and gets excited for Santa's arrival. We leave about 10:00, set up our own Christmas, go to bed, wake up at the crack of dawn, open gifts, and then in the early afternoon we load up our favorite toys and dress casual for yet another day of drinking, games, and fun with our relatives. Crazy enough, last year, due to the snow, it turned into a three-day ordeal. We love our family, especially with the wine and spirits.

We can be thankful this year that my Aunt Winnie is now cancer-free as she completed her last dose of radiation one week ago. Now we have to pray that my Aunt Mary will get relief from her chronic low back pain and sciatica.

As for New Years Eve, we are going to our neighbors Ron and Angela's for their annual Eat, Drink, Be Merry and Play Games party in our subdivision. No kids (he he). It should be fun. Hopefully we're headed in the right direction for a more promising new year.

My Delta Zeta friend, DiTy and her extremely sensitive, thoughtful, caring husband Jim, with support from Lori P., Jeryl and Julie F., Carrie, Patty and Nancy, Ellen, Jane, Missy and Denise (the birthday group), presented me with the gift of GiveForward. It is a remarkable website (http://www.giveforward.com/wecareforkim) where people I know, as well as people I've never met, have shared messages, their generous donations, and prayers toward my family and I. It is the most overwhelming experience I've ever felt, as I have been part of a fundraisers in the past, but this is totally different. This is a truly wonderful group of people wanting to do good for others in the world. It is amazing and brings me to tears when I read their notes and see the generous amounts that we have already achieved in just 10 days time.

In addition, it was brought to my attention last night by Jim that the GiveForward organization has chosen my blog and story as their favorite this season. They have decided to take money that they have raised (remember, they are a company that makes 7% profit by people who do fundraisers) and make our Christmas holiday more special. I'm not sure what they plan to send but Jim said they were hoping to send gifts for my two kids. How touching is that? I didn't think companies did this kind of stuff.

I really do appreciate everything that everybody has done. I know everybody is very busy at this time of year, and in this tough economy I am so touched that you have chosen me to receive your blessings. THANK YOU and GOD BLESS YOU ALL. May you all have a Merry Christmas and Happy New Year.

p.s. I still hope to send Christmas cards at some point. I'm off now to get the rest of my gifts wrapped.

"It's better to look good than to feel good."

2011-12-08T19:19:00.008-06:00

Hope you all had a great summer and are ready for a nice, hopefully mild winter. I swore I would never wait this long before blogging, and here I am, doing it again. So, hopefully after today this will never happen again. Before you get started, go grab yourself a tasty beverage, a comfy seat, and your reading glasses (ha ha).

I'll start with summer, which was uneventful for the most part. We started off the summer with the whole family taking a trip to Wally World (not to be confused with the Walmart nickname). After Disney we spent a few nights at the Marriott World Center. We had Marriott points and, due to the economy and less people traveling, we were upgraded to a presidential suite with two balconies and a side party deck. While we were there, we connected with the Kennedy-Luppowitz clan (my friend Sheila from high school days and her family) who were down on holiday from Atlanta.

I was so looking forward to my son getting his license so he could drive me around in the summer, but two days after his birthday in July, he shattered his elbow on his dominant arm. He had to wait 4-5 days for the swelling to go down before he had surgery. The day he had surgery, we had a power outage in our area that lasted three days. They did the surgery on backup power and sent him home with no ice. The stores were out of ice by the time we got there. Poor Tyler had no ice, no TV to distract him, and no lights for three days. Luckily he had pain medication. Ha ha.

I was very nervous throughout the summer because of the previous skin cancer surgeries and wore a 99 SPF protection at all times. Even so, I still had a tan due to my adrenal gland causing my skin to be darker. I had a few more lesions frozen and two more treated with Mohs surgery all in one day.

Besides that, I decided to take the summer off medically and avoid doctors and tests until my kids went back to school. Which brings me to the third week in August, which is when I had repeat MRI scans of my brain, spine, kidneys and abdomen, as well as several visits to the eye doctor for follow-up on the optic nerve and retinal lesions.

After seeing my eye doctor last in September, he recommended me going to NIH or to Michigan to see a eye specialist who was doing some experimental chemo for patients with glaucoma or optic nerve issues. I spoke with the doctor at NIH regarding anything new they were working on for the optic nerve and was told that the only thing they could offer me was a chemo injection near the base of the tumor, which in my condition with my easy bleeding and platelet disorder, could likely result in bleeding and losing the vision I have left. The doctor never got back to me as to whether I would even be a candidate but told me it sounded very risky at best. At the time, no one had any shrinkage from the drug. When I researched the systemic chemo called Avastin, it has many, many side effects, one of them being bleeding, and he has seen some shrinkage with a few patients, yet when they went off the drug, the tumor got bigger. Therefore, I have opted to say my prayers and hope for the best, which I think is a good choice, as my internist, Dr. Havey, feels my body could not withstand long-term chemo. As for my vision, it has definitely worsened in this past year. The tumor has grown in size and has caused my vision to be more murky and blurry, and distinguishing colors is hard for me.

As for my neurological status, I have been getting more headaches recently and have continued to have problems with my right arm. It started out as numbness, moved to mild-to-moderate deep bone pain, and has progressed from occasional to almost constant through the day. I have yet to see my neurosurgeon to read my films, even though they are four months old, because he is so booked and I'm waiting for a cancellation in his schedule. Otherwise I will not be able to get in until January or February, when I'm almost due for new scans. My internist looked at the report and he feels the pain in my right arm is probably due to herniated disks in my cervical (neck) spine. In that area, he thinks the bones are so compressed now that they are pushing on the nerve that goes to that arm, causing deep bone pain. This is similar to when people have sciatica in their lower leg caused by herniation in their lower spine.

Toward the end of the summer, I got together with an old college sorority sister, Lori Pritchett. We went to the race track for a girls' day out, which turned into a weekend of fun. We were even given tickets to the Bears game.

I took a quick four-day trip to Vegas in September to help my aunt celebrate her 75th birthday. There were six girls in all and we stayed at the Paris Hotel on the Strip. Even sold all my gold so I could afford to travel and gamble as well. Got to see the Beatles Love show. It was so good. We walked the strip and were even supposed to meet J Lo at a hot nightclub called Pear. We were all dressed up and ready to go when my other aunt (Mary) had a fainting episode so severe that she stopped breathing at the restaurant table, and her pulse was in the 40s and irregular. The nurse in me went into action. We called 911, took the cushions off our chairs, laid them on the restaurant floor, and tried to get my aunt to come to with cold rags. After a few minutes, her head and eyes went back and she projectile vomited all over herself and me. It was tragic, we were all frightened, and luckily she remembered none of it. Now we laugh about it but that night, instead of going out with J Lo, we spent it in the emergency room in Vegas. Unfortunately, this put a damper on the rest of her trip and our trip as well, because we didn't want to leave her alone or do so much activity that it would cause another attack.

Most importantly, we had already celebrated my aunt's birthday at Mon Ami Gabi, a French-American restaurant. We sat outside on the patio in front of the Bellagio, which has dancing fountains with water synchronized with music. None of us lost too much money in Vegas and we plan to get back for another birthday someday.

Had a very busy fall season. Tyler once again played varsity soccer. Unfortunately, he missed half the season due to his broken elbow. Our team didn't make it to State this year, but we won the championship for the Pepsi Showdown, which was played the Fire Stadium. That was kind of cool. Tyler is in his Junior year of high school.

Alyssa, now nine and in third grade, keeps herself busy with tap, jazz, soccer, basketball, Brownies, and art class. Sadly enough, she still says she's bored. I don't get it. Both are doing well at school.

Steve has had another year in sales at the start-up company. He keeps himself busy working and doing all the things I once did: driving, bills, shopping, etc.

The latest news for myself is that starting in late October, I began feeling achy, feverish, fatigued, nauseous, and I had headaches and almost flu-like symptoms where everything hurts. I had blood work and urine studies done in the beginning of November. Even though I was asymptomatic, I apparently had a bladder infection. I was put on a broad-spectrum antibiotic for 10 days. When my blood was tested, my white count was elevated, so my doctor ordered another antibiotic for another seven days. My blood was drawn on Nov. 22 and my white count, instead of going down, went up into the 20s. He couldn't figure out what would cause this and said if I still felt sick in a week, to go in and see him. Which brings me to Dec. 7 when I saw him again. Since none of my symptoms had changed or gone away, he retested my urine and ordered a variety of blood tests; one set being specific for a pituitary problem.

After looking up pituitary disorders, the most common one causes a benign growth or imbalance of your hormone levels that put pressure on your pituitary gland. If this is what I have, hopefully there is an easy solution to the problem. I didn't realize the pituitary gland could cause all the problems I was having. So I should know sometime within the week whether this is the case and whether my white count is still elevated, which would mean we would need to look for another source of infection.

In addition to seeing the internist yesterday, I also got to see my urologist (the kidney guy). I love him; I even wore makeup for him. He's so funny. He said that although the scans are relatively stable in terms of size, the cysts are becoming more solid and the solid is renal cells (cancer). I thought there were one or two areas, but after looking at the scan with him, there is almost no healthy kidney tissue. It's all been taken over by growth after growth. He said, unfortunately, he could do nothing for me in terms of saving any healthy tissue, and he's surprised I have the function I have. His advice was to call the transplant coordinator. He feels I would not last on dialysis; the sickness you get from that would be too great for my body. The only option he sees is when the tumor gets to 2.5 to 3.0 centimeters, having a live donor ready to give a kidney when the time comes.

The donor needs to have blood type O+. If willing, the coordinator would send a letter to your physician and start the process to determine if you are a match. In addition to matching, there is rigorous blood testing, stress testing of your heart, psychiatric testing (to make sure you will never have regrets), and you have to be in perfect health to donate an organ. It can take six months to find a donor. The doctor suggests getting the ball rolling because in six months I could be ready for one. It's a game of roulette because you don't know when it's going to grow. Once it's past 3.0 centimeters, and if you don't take out your kidney then, you will risk it metastasizing. My largest is 2.2.

That ride home was depressing, except the doctor said, "On the bright side, you would never know you're turning 50; you're very attractive, dress well, don't look frumpy, and you're not portraying a sick person. Because your vision changed so gradually, other than seeing your skin with bruises and scarring, you would never know you had anything wrong with you. But I know you on the inside and I see you're probably one of the sickest patients I have." Well, as my brother always said, "It's better to look good than to feel good."

I'm looking forward to the holiday parties and seeing my sorority family on Sunday. Now that you've read this, next time we talk, you can fill me in on your life. That's the whole reason this blog came together in the first place.

Winter blues and a brighter spring

2011-05-07T14:17:00.008-05:00

The winter blues (and I mean blues...)

Sorry I have not been able to post in such a long time. I was hoping that my life would hold no medical surprises for me after the new year, but unfortunately several things popped up...

In January I saw a rheumatologist who did a very thorough workup looking to see if she had any ideas as to where all my bone pain and fatigue originated from. After almost 20 tubes of blood were drawn, I was found to be borderline lupus and everything else came back negative. She wanted to watch my labs for lupus and was not convinced that was correct, yet I have nearly every symptom of this condition. Until my level goes up, she chose to diagnose me as having fibromyalgia and/or signs of clinical depression. Ha ha ha. As much as I like this physician, Steve and I as well as many of my friends do not feel that her final diagnosis is right. Fibromyalgia seems to be diagnosed on anyone they can't find a real diagnosis for and I have no symptoms of it -- no trigger points of pain. In addition, I tried the medication that treats this and was absolutely no better. I'm sure there is some depression in there as I have some SAD (seasonal) issues as well as a much changed lifestyle over these last few years. The dark dreary days don't help anyone's mood, but when you don't get light in your eyes it makes things even drearier. She looked at my skin and felt it warranted another trip to the dermatologist as she had never seen skin conditions like mine before, and wondered if it was some sort of pain-related syndrome.

After seeing the skin doctor in February, he knows of no syndrome related to pain and skin, yet found an area on my hand (an unhealed scab). After a biopsy, it came back positive for squamous cell skin cancer. So, I was scheduled for Mohs surgery later in the month.

While waiting for that, I saw my eye doctor who noticed some changes on the tumors of the retina and performed laser surgery to treat that area. Unfortunately, this is going to cause more blind spots.

Mohs surgery was simple. (For those of you not familiar with Mohs, it's an outpatient procedure where multiple layers of skin are removed, one at a time, until there are no inflammatory or cancer cells present. The reason it's so lengthy is because you have to wait an hour between each removal for the lab results.) After eight hours of Mohs surgery, the only disappointing part was ending up with a 2.5 inch incision on my hand and it went very deep, all the way to the tendon. A biopsy was taken of a suspicious area on my left shoulder. This biopsy came back as basal cell.

Things were going well until Day 10 after Mohs surgery when I woke up and found my hand red, swollen, painful, and double in size. It was a Sunday and I therefore called my doctor at home. He phoned in an RX as he felt it was an infection and said if things worsened or stayed the same, to come to the office in the morning. As my luck would have it, the next day I woke up and my arm was 3-4 times its normal size, all the way up to my forearm. After taking a look at it, the doctor recommended a direct admission to Northwestern Memorial for further treatment. My lovely friend Darlene took me to the hospital. Steve was leaving for the airport for business but the doctor told him to cancel his flight/trip. In the meantime, Darlene drove me straight to Northwestern and stayed with me until 10pm that night, and Steve came home and got the kids situated. Needless to say, this was Valentine's day. So Darlene and I both sent heart-shaped pizzas to our families to celebrate without us.

While they were home enjoying, Darlene and I literally had nothing to eat as doctors were running in and out from every specialty. After 12 needle sticks they finally got my IV started and labs drawn. I was told I had a staph infection as well as several other bacterial infections which required IV antibiotics. It looked like I'd be camping out for at least 3-4 nights at the hospital again. Waah... This time, they put a picc line in on the following day, rather than waiting until discharge. Luckily, I did not have what they all feared, compartment syndrome, as it would have caused me to have permanent loss of a part of my arm. They made me a mobilizing cast which totally made it less painful. After two days the swelling significantly went down. It took at least an additional month before returning to almost normal.

Wishful thinking, is it almost spring yet?

In March, I remained on antibiotics for the staph and other infections for another two weeks at home. I had a relatively normal month yet still continued with bone pain and still had fatigue. I spoke with the rheumatologist who put me on an antidepressant, which I took myself off of one week later as it made me shaky and I had difficulty sleeping. So I just figured I may as well get used to the pain and fatigue and try to move on with my life. I schedule little outings with days in between, and do projects around the house with frequent breaks until they can figure out a better diagnosis.

My kids were very excited for spring break the end of March, yet I overdid it and started getting sick again. The whole week I had a fever, bladder infection, headaches, and increased fatigue. After a week feeling like this and my antibiotics not helping, I took a trip to the E.R. where they said I was on my way to being septic again like last August, as I was not on enough antibiotics. Again, thank you Darlene for coming to my rescue and taking me to the hospital and again spending the evening with me. Steve cut his trip short and came back the following morning.

I hurt my ankle April 8th while walking my dog on our first nice spring day. I twisted it and thought it was just sprained. After several weeks of limping and swelling of my ankle and calf area, I decided to call my favorite foot doctor, Dr. Weil. I just saw him on May 6 and he diagnosed me with a torn achilles tendon. I'm scheduled for an MRI Monday morning to determine if it's a full or partial tear and to determine the treatment. As for now I'm back in my lovely boot.

In addition, in April, I revisited the eye doctor, Dr. Cohen, who had wanted me to return several times for recurrent laser surgery, yet I was unable to go due to being in the hospital. Thankfully, this was a good thing and the retinal tumor area appeared to have responded well to the initial laser and was unchanged. Unfortunately, though, the tumor on the optic nerve is again somewhat larger and there is no treatment still for this. He said he was going to do a search and had some upcoming conferences to see if there was anything in the works for a systemic drug that may stop vascular tumors and hopefully even shrink them.

Then I had Mohs surgery on my left shoulder. Ten days later I had my sutures removed and I'm happy to report I had no issues with infection this time around. The recent MRI of my ankle showed a split tear of my tendon, which is a very rare condition that does not require surgery. I started physical therapy and will continue to wear the boot for at least another six weeks. I see the eye doctor tomorrow and get a tooth crowned on Tuesday.

On a happier note, during the month of March, we decided as a family it's been way too long since we've taken a trip together (three years in June). So, we are all headed to Disney World in Orlando for a week of sun and fun and hopefully no limping. The kids are looking forward to school getting out June 2.

Alyssa made her First Communion on Saturday, May 14. Aunt Jan and Uncle Jim from Texas flew up to attend a wake and funeral and while they were in town we ended up throwing a last-minute Communion party. Alyssa was so excited; she got to carry the gifts up at the church and looked like a little bride. I will post pictures on this site when I get them back.

The following day we spent with family. Unfortuately, Tyler was unable to attend due to a travel soccer game. On a positive note he scored a goal and got an assist, but he broke his toe in the process. It was great to see the family again since I have not seen everyone since Christmas. Thank you Stacy for going that extra 40+ miles to pick me up, and Winnie and Lou for bringing me home. Next, we look forward to Alyssa's tap and hip hop recitals June 4 and 5. We bon voyage June 6 for Orlando. And, having both kids heavily involved in soccer keeps us busy. In addition to Tyler playing for the travel team, the Magic, Alyssa plays rec soccer.

I have learned my lesson on waiting so long between posts, as more than five months have elapsed since my last one. I promise you all this won't happen again. Please keep in touch and I hope to see you all this summer. Hope you enjoy the end of the school year and are looking forward to summer.

Hoping 2011 brings happy, healthy New Year to all

2010-12-31T13:56:00.010-06:00

Hope you all had a Merry Christmas! Sorry for the lateness of my post as I have been very busy trying to enjoy the holidays. I'm hoping the new year continues to bring good news, as I recently received the news that my kidney and pancreas tumors and cysts have remained stable and there is no spread to my lungs. YAY!! Thank you for all of your prayers as I was very anxious this last month awaiting the news. Unfortunately, I still continue to have the original issues and plan to see a rheumatologist in the new year as well as a bone specialist- my left shoulder pain returned and my deep bone pain continues in my upper back and arms (wish I knew why). Perhaps I retriggered the pain a bit on Christmas when I fell due to not seeing some steps because of the snow.

Santa was good to all of us. We have been having a nice visit with my sister and her family. They actually extended their trip to New Years Day. Santa (Mr. Steve) bought me a photo collage for the wall with 3 very important words; Live, Love, Laugh....something I plan to do more of in 2011.

As for my New Year's resolutions, I'm going to try to eat healthier and get in better shape. Who knows, maybe while the kids are at school I will be dancing to the Kinects Dance Game.

This Christmas holiday has gone very quick for us...went to Wilmot with some friends, kids went sledding, shopping, lots of eating and playing games. Happy New Year to all and I will keep you posted as things arise.

Prayers needed...

2010-12-07T15:27:00.003-06:00

During the past month, I was still seeking the cause for my various aches, pains, etc... I have had multiple calls and visits to doctors, as well as a full series of MRI's of my brain and full spine. I continue to have an absess in my cervical spine (at my hairline), yet due to the fact that it has not grown in size and appears somewhat smaller (possibly due to the aspiration they did November 1st) they aren't convinced that it is infected. Rather, they decided to continue to watch it, as there is some erosion of the bone right up to that site. They don't want to go in there and cause more trouble if it isn't necessary.

I had a full panel of lab work. The only things that could point to any problems were that my white count is high and my vitamin D level is low. Although the doctor doesn't believe the cause of my issues is the vitamin D deficiency, I have decided to take a supplement.

After discussing everything with my doctor, he decided the next step would be to see if the renal cell has moved out of the kidney to other areas, such as my lungs. I will be having MRI's of my abdomen and chest this Thursday and will get results when I see the doctor early next week. If these tests don't show anything, the next step will be a body scan.

Please say your prayers that things remain unchanged in my kidney and that is not the source of my problem.

I've been staying inside out of the cold and enjoying my Christmas decorations. It's been a nice change of scenery! Like everyone else, I am busy trying to prepare for the holiday. I was excited to learn that my sister, Robin, and her family will be driving in from Pennsylvania to spend the holiday with us! She will be here from the 21st - 28th. We are looking forward to spending time together without there being a medical reason for the visit...

On September 2nd, Steve and I celebrated our 20th Wedding Anniversary. As our belated celebration, we went into the city this weekend to see the musical, Wicked! We brought the kids with us & everyone loved it. Because of my vision loss, I was able to sit in the 5th row and could see really well.

Shoulder diagnosis

2010-11-03T17:06:00.002-05:00

(A quick update from via Suzanne) Kim saw an Orthopedist from IL Bone & Joint yesterday. He did x-rays and an MRI. He diagnosed Kim with tendonitis, bursitis and a torn rotator cuff! No wonder it has been hurting her! He thinks it probably happened when she fell a while back. He gave her a cortisone shot and prescribed physical therapy. He is hoping that the rotator cuff tear with not require any surgery, given her plethora of other issues & slow healing problem. He will follow her progress and see if the tear gets any bigger. Kim was ELATED to have a diagnosis and plan all in one day!

Unfortunately, here we go again...

2010-11-02T12:31:00.003-05:00

The latest news is that I found out from the dermatologist that the type of porphyria I have is called pseudo-porphyria. Basically, this means that it is not hereditary. This type is often caused by a poor immune system (long-term antibiotic use). What he feels more likely is that poor kidney function contributed to it. It seems to have appeared following my renal sepsis. He says that once your enzymes hit a certain point in the blood that it will cause your skin to blister, essentially attacking your skin as if you are allergic to it. UNFORTUNATELY, he does not think that type is causing my other symptoms such as fatigue, weight loss, low-grade fever, pain (especially in my arm/shoulder). He told me to look for another source.

I got these results a week ago and since then, I have phoned all of my doctors. The infectious disease doctor ordered a scan of my cervical spine to see if something there was causing the shoulder pain. I had the scan on 10/28 and received a frightening call upon returning home, stating I had a cervical absess that could be life-threatening and I needed to return to the hospital (Northwestern) immediately. I chose not to go until yesterday (11/1) when they were able to schedule me for interventional radiology to drain the absess. Apparently, the absess is two centimeters in diameter, yet they were only able to drain a small amount of bloody fluid. Now I am home waiting for culture results. There is also concern that if there still is fluid in there, that it will need to be removed through surgery. UNFORTUNATELY, they feel that where the absess is it is probably not causing my arm/shoulder pain & I am going to see an Orthopedic doctor today to see if there is something else wrong. I am still awaiting return calls from most of my physicians & am quite frustrated that I've been feeling crappy for about two months now and still have no answers. Hopefully, we will get to the bottom of this soon. Maybe today. My doctor prescribed Percocet about ten days ago, which I take like candy. However, on Halloween, I discovered that martinis work just as well, if not better! LOL

Hope you all had a great Halloween and got lots of candy : )

The new "something" is Porphyria

2010-10-20T14:41:00.006-05:00

After nine months of job hunting, Steve has finally landed himself a regional sales management position in a start-up urology company. I must say a big thank you to all of you who have kept him in your prayers and passed on resumes for him. It certainly is nice to be on a payroll again. The best news of all is that he doesn't need to travel much. After 18 months in his last position of traveling continuously, it's nice not to have to find rides for the kids and myself.

My Kindle has just been updated with a free application which has increased the font size, and now I am able to read it again and not just listen. Yeah! It's also been a nice bonus that the kids are back in school. Tyler is a sophomore and Alyssa is in 2nd grade and they are both doing well.

Medically, since my last post, I've had two root canals, two crowns, and still require more dental treatment but can't afford it at the present time. My dentist told me that the reason I'm having such bad decay is because of the brain stem radiation back in October 2006. I was never warned of this being a side effect.

After returning home from the hospital with the kidney/blood infection, I received antibiotics through August 9 through a pic line. About a week after the pic line was removed, I started feeling as if I was getting another infection. I had low-grade temperatures and felt flu-like and very achy. I had blood work done. My white count was elevated but they could not find a source for the infection so they decided to just watch it. This continued and yet the achiness has increased in intensity, I'm very fatigued, and I sleep 10-12 hours per night. Since coming home I've lost another 10 lbs and have not been able to gain it back. The doctors were still perplexed as the blood work had not pointed to a source of infection. So I went to see an infectious disease doctor in mid-September, and he seemed to feel that I had Lupus or a condition called Porphyria. My symptoms at this point were frequent and painful blisters on my hands and feet, and my skin discoloration had worsened on my arm.

Later that day I saw a dermatologist who saw the blisters. Dr. Brieva did two skin biopsies to determine what type of condition it could be. He felt that my skin discoloration and thinness was not just related to steroid use in the past and that there was some other factor. About 10 days later, the dermatologist called with the skin biopsy results and said I have Porphyria and ordered lab work and urine tests to determine which of the eight types I have. As I have no history that I know of in the family, he feels it probably started as a result of long-term antibiotic use over this past 10 months.

Porphyria is a rare disease of the blood that causes fatigue, weight loss, low-grade temperature, neuropathy (nerve pain), blistering, skin pigmentation change, nausea, etc. -- everything I have. My pain seems to have settled in my upper back and upper arm. I'm still waiting for results from the Mayo Clinic lab as to which type of Porphyria I have.

Other than all this nonsense, I truly enjoyed the summer and it was nice to finally have a summer this year (last year was cold, crappy, and I felt horrible). Hard to believe I've aged so much but I even had my 30th high school reunion on September 18th.

I recently have seen the eye doctor, Dr. Cohen. Again, he said not much changed but I still see crappy. We'll be following up with infectious disease and whoever follows Porphyria. I never had a chance to start chemo treatments for my eye or kidney with all that's happened in the last year. The good news is my internist said he phoned in a strong narcotic for me. Looking forward to hopefully finding some better relief today for my back. The pain is draining my body of energy.

It's almost full circle now. My brother passed away October 22nd of 2009 and I remember blogging from the lobby of Northwestern Memorial Hospital. With everything happening this past year, I realized I never fully grieved. He comes to mind often and I really miss him.

On a brighter note, Alyssa is also a year older, turning eight this Saturday, and we will be hosting a spa party with 20 of her closest friends. She's so excited. It will be quite fun. Ooh la la!

Seems like it's always something...

2010-07-27T14:49:00.002-05:00

From Suzanne: It's been a while since we've posted anything. That is a good thing actually. Kim had been feeling really good and getting out to enjoy the summer. Last week, however, that all changed... I just spoke to Kim on the phone and wanted to update you on the latest. I will do my best to summarize the events of the past week.

At the beginning of last week, Kim started feeling ill and had a fever around 103-degrees. She was achy and decided that it must be the flu. As the week went on, her fever continued and she began feeling disoriented. Finally, on Thursday, a friend convinced her that she needed to see a doctor a.s.a.p. She went to Condell Hospital in Libertyville and was admitted. Apparently, she had a bladder infection that became a kidney infection and ultimately spread to her blood, i.e. she had sepsis. She was also very dehydrated, so they started administering fluids and antibiotics.

She was transferred to Northwestern hospital on Sunday, where she continued treatment. She was in ICU at first. Her heart rate was in the low 20's and they wanted to keep a close eye on her as sepsis is extremely dangerous. They did an ultrasound of her kidneys to see if the infection had caused any further damage & it seems like they are stable. She will have an MRI in the coming weeks to be sure.

Kim had a pic line inserted and will be coming home today. She will continue with IV antibiotics for 13 more days. Her heart rate is now in the 50's, which is low but acceptable. Not surprisingly, she has very little energy. She has also gained 24 lbs. in water weight since entering the hospital, so that is uncomfortable as well. It'll probably be 4-6 weeks until she's feeling back to normal. They want her to do physical therapy to strengthen the muscles in her neck. That should help with some of her pain.

Regarding the eye situation, that seems to be stable for now, although Kim says she sees "like crap." LOL She also recently had Part 1 of a root canal done & goes back for Part 2 next Monday. Poor girl never gets a break!

Comfortably numb... (actually un-comfortably numb)

2010-06-16T19:19:00.003-05:00

I saw the eye doctor again on June 7th. Dr. Cohen was pleased that the fluid was decreasing and the bubble seems to be shifting out of my central range of vision. It seems like my vision is getting a little better now, so I am glad I did not get the steroid injection. His big concern still is the optic nerve lesion because it is large and leaking. He's afraid if I do PDT again that it would really compromise my vision. Therefore, he wants me to hold off until there is some further change in the size or amount of leakage from the optic tumor. I follow up with him on July 2nd.

I've been very preoccupied this summer with my Aunt Winnie, the travel agent who I went to Florida with. Unfortunately, she has been suffering from medical issues herself. She required surgery three weeks ago for a pinched nerve & after being in rehab for a week, had to undergo another surgery due to complications and signs of infection in her lumbar incision. It turns out that she has MRSA, a really serious type of staph infection which is very resistant to treatment. She's very frightened now, as she has to be on antibiotics the rest of her life. So, please send prayers her direction too.

Over the past couple of weeks, I have noticed tingling and numbness in different parts of my body - e.g. my arm & fingers have been tingly and my pinky is completely numb. The sensation in my right arm is really off. It feels like it's asleep and I keep shaking it to wake it up. Then I noticed that it started progressing into my right foot, causing numbness in several toes, my heel and my shin is tingly also. After the symptoms worsened, I contacted my neurosurgeon, Dr. Bendok, who suggested I go right to the emergency room. He was concerned that I had a stroke or a recollection of fluid in my spine. Unfortunately, Steve had the stomach flu so my friend, Darlene, drove me down to Northwestern. They kept me there all night and I finally had an MRI of the brain and cervical spine done at 5:00 a.m. this morning. Things looked good and there was no sign of a stroke. However, they are still really concerned with the numbness and its cause. They gave me the option to stay and do another MRI of my thoracic spine. They think that maybe there are tumors there that could be the culprit. I chose to come home & am scheduled to go back on Friday for MRI's of the brain, cervical and thoracic spine (3 hours!). Then I see Dr. Bendok on the 28th. Another possible reason for the numbness could be hyperstimulation of the nerve root. Your nerve endings regenerate about six months after surgery, so it could just be that I'm having a hypersensitive reaction. So, they put me on Lyrica, which will help calm down the nerve endings if this is indeed the problem. I'm very anxious because my symptoms increase daily. I am also nervous because once there is nerve damage, you sometimes never get that feeling back.

A BIG thank you to Darlene for taking me to the hospital and staying with me all night. It was like a sleepover. We talked and laughed all night. Unfortunately, the bed we were sharing broke in the middle of the night!

Hopefully, this will all be resolved soon and I can get on with enjoying my summer. Hope everybody else is doing well...

No steroid shot for now...

2010-05-19T15:51:00.002-05:00

I returned home from Philly on Saturday, after spending a few days with my sister, Robin, who lives in the Poconos. On Monday, I went to see Dr. Cohen (my eye dr. here) in order to get the steroid shot in my eye. However, on Sunday, I felt that my vision was improving a little and less foggy. I told the nurse this & requested that they perform another test prior to doing the injection. When he compared the new test with the one from the week before, he thought the fluid levels had gone down slightly. Therefore, we decided to wait on the injection. I will go back to see him next Tuesday. If things stay the same or get better, I will not need the injection & he will just keep watching the eye closely.

On Monday, I also (finally) spoke with my kidney doctor. He felt that there were only slight changes and not to worry about the small growth in my left liver. I will follow up with him in the next month to discuss a plan (possibly chemo or surgery to address my kidney cancer).

Then I talked to my infectious disease doctor from Northwestern. Although my bloodwork came back okay last Friday, he wants to repeat it and see me in his office since I have felt achy and fatigued for the past few weeks. I will see him next Monday.

Whew! That's all the medical news for today. Enjoy the last few days of freedom before the kids get out of school : )

Update from Philly...

2010-05-11T20:29:00.002-05:00

From Suzanne:

Today, Kim was seen at the Wills Eye Center in Philadelphia. She flew out there yesterday. By some bizarre coincidence, a friend was traveling to Philly on the SAME day and on the SAME flight as Kim, and therefore, became her chaperone for the journey there. When she arrived in Philly, her sister, Robin, picked her up at the airport, stayed with her at the hotel & escorted her to her appointments.

I just talked to Steve and got a brief summary of what the doctors from Wills told Kim. I apologize ahead of time if any of this is incomplete or downright wrong! I will ammend it after I talk to Kim, but wanted to give everyone an idea of what was happening.

The doctors found that fluid is leaking from her optic nerve tumor and is causing something like a blister on her retina. This is what is causing her vision to be foggy. They said that this has nothing to do with the PDT (photodynamic therapy) treatment she had done a few weeks ago. Apparently, that was done on a different tumor? and the procedure is so mild that they said it would not have caused this. They are going to try giving her a steroid shot in the eye that they hope will reduce some swelling and hopefully stop the leaking. They are not sure that it will work & there are some risks associated with doing it (e.g. infection, glaucoma, etc.), but don't know what else to do. They said she could do it there or come back home & do it. Because there is some discomfort associated with the procedure, she decided she will wait until she returns home to do it. If this does not work, they mentioned returning there for more PDT.

Kim is staying in Philly again tonight and then I believe she will go to Robin's and spend the day tomorrow. She will most likely return home on Thursday?

To see or not to see... that is the question

2010-05-05T17:34:00.002-05:00

Since my last post, I've seen the eye doctor several times. The blood on the retina has been reabsorbed and the swelling went down. Unfortunately, my vision is still significantly worse than before the procedure. The reason for this is that I now have a new problem. I had a scan of my eye and it showed that there is fluid behind the retina, which is causing distorted vision. The leakage of fluid is coming from the optic nerve tumor, which has sprung a leak. Dr. Cohen, my local eye doctor, has no answers for me and recommeded me to be see at the Wills Eye Hospital in Philadephia. There I will be seeing the top doctors in the country to see if they have any ideas of how to help me. These are the doctors to whom he presented my case a couple of weeks ago. Due to the urgency, I will be flying out next Monday and have an appointment on Tuesday (a 6-8 hour evaluation). Hopefully they will have a treatment plan for me, which may include a radiation implant or systemic chemo. My sister lives in PA & will meet me there to keep me company and help me get around.

Now for some good news... Yesterday, I had a repeat MRI of my spine to see if the infection was improving or was gone. It appears to be gone! Hooray! And, there didn't appear to be any change in the size of the tumors in the spine or brainstem.

This Friday, I will see my internist for a physical, bloodwork & EKG as a prerequisite to being seen at the Wills Eye Clinic.

On a completely separate note... I received a surprise book-on-tape in a bag from a mystery person. It came at the perfect time because I was going crazy not being able to see anything! I finished it in three days and would highly recommend it - House Rules by Jodi Picoult. So, thank to my secret angel!

I also want to take the opportunity to thank Brian and Darlene Schick for generously providing me transportation to Philly on a United buddy pass. Thanks also to Suzanne and Ray Baumruk for putting me up in a hotel while I am there. It is greatly appreciated, as Steve has still not found a job after six months out of work. If you have any tips, he is still looking for a medical sales or management position.

To all of the mothers out there, I hope you have a wonderful Mother's Day!

Will let you know what happens in Philly...

I can('t) see clearly now...

2010-04-20T17:08:00.003-05:00

Last Friday, I had the PDT procedure done by Dr. Cohen. I had a weekend planned to clean the basement and go see some movies because I couldn't be outside in the sunlight. Instead, I spent the weekend blind as a bat! My vision has gradually decreased over the past few days. On Monday, I went back to see Dr. Cohen. He said it appeared that I have a leakage of blood behind the eye that is blocking the light as well as the ability to see things (in addition to my already poor vision). He said that it should improve over the next week. However, I called him today to tell him that it is still getting worse. He was surprised to hear that my vision had worsened rather than improved. If things continue to worsen through Friday, he said he would do surgery to irrigate the blood out of the eye and laser the vessel closed. He would probably do this next Monday or Tuesday. He will be out of town for the next few days at some vision conferences and will be presenting my case at Wills Eye Center on the east coast. He expects there will be many oncologists there & wanted to present it so that hopefully someone may know of a systemic treatment they could do to stop the optic nerve tumor from leaking and growing.

On another note... after three years, I decided I should make a trip to the dentist. I was hoping that at least one part of my body was in good shape, by not so. I need two crowns, a root canal and gum surgery. Yippee! Lucky me...

Tomorrow, I go get my pick line out (Yippee for real!) and have an MRI of my pancreas and kidneys. I'll write more later this week once I discuss the findings with the doctor.

The latest and greatest

2010-04-13T19:31:00.002-05:00

I had the MRI of my spine after returning from Florida. Unfortunately, the infection has moved from the thoracic area to my cervical (neck) area and has affected two bones. They said I needed to continue IV antibiotics for three more weeks (which I just finished) and then start on oral antibiotics for six more weeks. I will have another MRI of my spine in three weeks and see the doctor, at which time I will hopefully be done with this!

I went to the eye doctor and was pleased to see my vision improve from 20/400 to 20/200. 20/70 is the legal level required for driving during the day, so I'm still not able to do that. Upon seeing the dr., he was very disturbed by the changes going on in my eye. There was growth on a large problem area that I've had treated 50 or so times already. It has grown larger and is starting to leak. This could be troublesome if the fluid continues to leak and goes toward the macula (that would cause decreased vision). He wants to try a new treatment, which I will be doing this Friday (April 16th). It is called PDT (photodynamic therapy). It involves injecting a dye into my veins and blasting the tumor 10 minutes later with a laser. The dye will be drawn to the tumor, because it is a vascular tumor and the laser should burn it. Unfortunately, this dye stays in your system up to 72 hours. During this time, I will need to avoid any natural light, or risk 3rd degree burns or further eye damage. Perhaps a double-feature is in order?

Another unfortunate eye finding is that the optic nerve tumor has also grown 15% and is leaking as well. He has no options for me at this time & wants me to look into systemic chemo treatments. I feel like I'm right back where I started! The dr. will be attending several conferences around the country next month and will hopefully find a protocol I can fit into. I called my kidney doctor to see if he knew of any studies and he feels that Sutent is working fine for his patients and doesn't know of anything else. Given the growth in my eye tumor, he wants me to get an MRI of my kidneys and pancreas. I'm getting it done on the 21st and will hopefully be given some good news.

On a brighter note, I am feeling better and have regained a lot of my energy! The sunny days have been helping keep my spirits up. I look forward to enjoying the summer and hopefully reconnecting with many of you socially... Will keep you posted. Wish me luck!

Walking on Sunshine

2010-03-24T19:37:00.004-05:00

I just returned from a not-so-balmy, but very relaxing trip to Fort Myers, Florida. It was exactly what I needed!

The day before I left, I had a big scare & was afraid I wasn't going to be able to take the trip. The doctor received my lab work & told me my kidney levels were dangerously high & my liver was having trouble filtering the antibiotic. They told me to immediately stop the IV infusion and I would probably have to go to the hospital to receive the first dose of a new drug. Luckily, they switched me to a drug that I now take once a day over 20 minutes. It is so easy & I feel so much more free! I thought the way I had been feeling was mostly due to the infection. However, once I switched drugs, I no longer have the fatigue, shortness of breath, fevers, difficulty focusing and overall depressed feeling. Within 24 hours of stopping the IV's, I felt back to my normal self. I was even able to walk the beach and went from lying on my couch to riding a camel at the zoo - LOL! I'll post photos at some point...

The nurse comes tomorrow & hopefully this drug is bringing my levels back to normal. I get an MRI on Monday & the 8-week course should be done a week from Monday. Hopefully, this infection is resolving and I can be done with all of this!

Hope you all have (or had) a great Spring Break! I'll post again after my MRI...

And some good news... Not only has my luck changed with feeling better, but the week before I left I got a call from the Illinois State Department of Rehab & was told that they would pay for my handheld magnifier, my computer software which allows me to use my computer again & an acrobat that has a camera that can enlarge any image (e.g. tv, documents, books, even my own face so I can see to put on makeup!). This is HUGE because the cost of these items would be over $5000 & they are not covered by insurance! I'M SO HAPPY!

I'd like to thank...

2010-03-11T13:31:00.000-06:00

After watching the Academy Awards the other night, I had a dream. In it, I started my speech by thanking the academy & then I said, "No wait, I want to thank my friends and family for all the support over this past year." LOL Can you believe it has now been a full year since this story began? It was last February when I tried to get into the chemo study at NIH for the optic nerve tumor.

I have done a lot of reflecting as I have been laying around this last month. Not a day goes by that I don't think about all that everyone has done. I hope you all know how much I truly appreciate every little thing - be it a phone call, a visit, a card, etc...

I've been down for the count the last month. I continue to have an infection and remain on antibiotics via a pump that I schlepp around with me 24 hours a day. I just completed week four & have at least 3-4 more weeks to go. I have an MRI scan in three weeks to see if the infection is clearing up.

Alyssa and I are going to Florida next week to stay with my aunt in Fort Meyers, FL, along with my cousin and her two boys. I hope the sunshine will work wonders on my energy level!

Never a dull moment...

2010-02-12T09:27:00.002-06:00

Last Thursday, Kim had an MRI done on her head and spine. A bone in her neck "lit up," indicating an infection. On Friday, she returned to the hospital to have a biopsy done. She was allowed to go home for the weekend while they awaited results and determined what to do next. This week, they confirmed that it is a staph infection in her bone & she needs to be treated with IV antibiotics. She went back to the hospital and had a port inserted, where she will receive the medication. Fortunately, she is able to use a pump rather than hanging IV bags. It's a little machine that she carries around with her in a pouch/fannypack & it only needs to be changed every 24 hours. No more waking up every 4 hours to change the IV bags - woohoo! (Steve is quite happy about this too.) She disconnects it for showering.

The doctors are hoping that the antibiotic will knock this thing out. They will do bloodwork every week to check for levels that will indicate if it is indeed working. Say a prayer!

A VERY BELATED "Thank You" to our Secret Santa!

2010-01-27T16:15:00.002-06:00

Just before Christmas, several packages began arriving at our doorstep for the children. The kids were very excited, as there was no indication who they were from. In the back of my mind, I thought it might be my brother or sister, because I had done this for them last year. Once they denied it, I was really stumped! I asked some relatives and friends, but so far it remains a mystery. Therefore, I'm hoping the mystery person reads this & knows how much we appreciated the thoughtful, surprise gifts!!! Tyler and Alyssa were very excited and love their new gifts :)

The fun never ends!

2010-01-27T15:39:00.003-06:00

I followed up with the cataract surgeon on Tuesday and he was very impressed that he saw no signs of infection, as he was worried to go in with my elevated white count. He did say that my vision was still 20/400 and it may become a little sharper in the next month. Unfortunately, it will never be good enough for me to drive again :( I will see my retinal doctor on Friday to see if there are any issues that HE can resolved to help improve my vision.

As for my neurological status, I have officially gone crazy - LOL. I have been experiencing an increase in headaches and muscle aches in my neck and head. Dr. Bendok said that a large part of it is due to the healing of the muscle that they cut through multiple times. He recommended different medication he thinks will relieve the pain.

Regarding my MRI scans of the spine that I had done a couple weeks ago, it describes two new tumors in the brain stem associated with a cyst. When I brought these to Dr. Bendok's attention, he suggested I run it by Dr. McCutcheon (the MD Anderson Dr. who did my surgery) & he also wants me to have another scan done next Thursday, which will include the brain, as well as the spine. Steve sent the report to Dr. McCutcheon and he was very interested to see both scans. We will send both sets of scans to him after my follow up scan next week.

Today I saw plastic surgery and infectious disease. They feel the open cervical wound is starting to heal and should be done in 4-6 weeks. They see no signs of infection, but they did do lab work to see if my white count went down.

Home once again!

2010-01-22T20:26:00.003-06:00

Kim came home from the hospital today. She can see MUCH better at a distance than she could prior to the surgery! The odd thing is that now she cannot see as well close-up. The doctors say that it will take approximately a month for her vision to stabilize, so her near vision may improve over time. After a month of recouperation, she can be fitted for glasses. While her vision is definitely greatly improved over what it had been recently, she still has the damage from the macular hole which will never go away... Her vision is approximately 20/400.

Eye surgery went well!

2010-01-21T16:46:00.002-06:00

Steve said that Kim's eye surgery this morning went well. Hopefully, when they remove the bandages tomorrow, her eyesight will be much improved!

Cataract surgery this Thursday!

2010-01-20T10:40:00.002-06:00

Kim will undergo eye surgery this Thursday (tomorrow - January 21st) to remove her cataract. It will be done at Lake Forest Hospital, where she will stay overnight for observation. While this is a relatively simple & routine procedure, the doctor wants to take extra precautions given Kim's bleeding disorder.

Last week, her white blood cell count was high, so she started taking two different antibiotics. As of Monday, this number was still high, but the eye surgeon has agreed to proceed anyway. They are thinking that perhaps she just has a little virus.

Next week there will be MORE doctors' appointments (neurosurgeon, plastics, infectious disease) at Northwestern Memorial for Kim. She feels like she just can't get away from there! They are continuing to monitor the healing of her neck wound...

Please say a prayer that her eye surgery is successful & complication free! While she will still technically be "legally blind," she is looking forward to a noticeable improvement in her vision!!!

Eye surgery has been scheduled!

2010-01-12T15:00:00.001-06:00

I had the drain in my leg removed last Monday. Then, I saw the neurosurgeon and he was still not happy with the amount of drainage coming out of my incision near my neck. I still continue with dressing changes twice a day and there is a wound care specialist that comes 2-3 times a week. I finally started physical therapy at home & hopefully that will relieve a lot of my neck pain and tightness of the muscles. I am no longer using the cane & feel pretty steady on my feet. The highlight this week is that I went to see a cataract surgeon in Lake Forest and got promising news! I am scheduled to have surgery next Thursday, January 21st. He said that I have a very severe cataract, so I should notice a significant improvement in my vision once he replaces the lens. If all goes well, I won't even need glasses for distance anymore. Over the next week, I will be having many more doctor appointments to follow up on my incision drainage issue. Hopefully, they will have some good news and be able to close this hole. After this very busy week, I should be up for phone calls again & would love to reconnect with everyone!

The saga continues...

2010-01-03T18:15:00.002-06:00

Brief update from Suzanne - Kim returned home from the hospital on Wednesday night (December 30th). She is still not feeling well & rang in the New Year quietly. Her leg and neck incisions are still not healing properly. She still has the drain in her leg & while it is helping relieve the pressure, recent tests show that the size of the "pocket" where fluid (blood) is collecting is actually getting bigger. There is still fluid gathering near her neck as well. This is clear & they think it may be lymphatic fluid (which is not dangerous). Kim will see several doctors at Northwestern on Monday (January 4th) and hopefully they will come up with a plan. They may admit her AGAIN and give her more platelets to aid in her healing/clotting. We will post again with the outcome from those appointments...

Home Sweet Home again...

2009-12-29T12:11:00.002-06:00

After 18 days at Northwestern Memorial, I was so happy to go home! I arrived home the day before my birthday (Dec. 18). The kids were so excited that I was home and that we could celebrate. It was very low-key, but nice to be home in my own bed. Lots of hanging out & cuddling on the couch with the kids watching movies...

On December 23rd, I had to return to Northwestern for a day of appointments. I got clearance to remove my sutures and staples. I was sent for an ultrasound of the hematoma in my left thigh & unfortunately, it had grown 7 cm from the previous scan. The infectious disease docs felt that I was still bleeding into that area, making it difficult for me to walk due to the pressure. They wanted me to go to the hospital on Monday, December 28th to have it drained. They also told me to me see Dr. Bendok on Jan. 4th.

The day after my staple removal, I noticed that there was a squishy area developing at the base of my neck again (where I had the original collection of fluid). I immediately paged the neurosurgeon & was told that as long as it wasn't draining to relax and keep my appt on the 4th.

Christmas Eve was wonderful. I went to see the lights in Lincolnwood with my family, went to church & then to my Aunt's home in Niles. It was great to eat good homecooked food & be with family. Christmas morning was great. The kids got everything they had asked for. I even got five pairs of pajamas! That afternoon, we went to my cousin's house in Naperville & once again celebrated with family and food! We sang our traditional songs & had a fabulous time.

Yesterday, December 28th, I went to have the hematoma in my left thigh drained. They felt it was still bleeding into that area and put in another drain. They decided to admit me to be given platelets and to watch the bleeding. On admission, the resident was mashing the fluid collection in my neck & about an hour later it started leaking. The neuro group was then called. They ordered a stat MRI to make sure that the meningicele did not reoccur in the brain. I got platelets and went for the MRI last night. Today I am still waiting for full results. However, they said that the big cyst did not come back in the brain. Rather, it is just under the skin. However, they don't know where it's coming from. Therefore, I have many different doctors coming in to see me today. I hope to be home tomorrow!

I hope your holidays were merry & that everyone got what they wanted from Santa. I will post more later after seeing all the docs...

There's an end in sight!

2009-12-16T18:14:00.002-06:00

(from Kim tonight via phone) Well, I'm still hangin' out at NW hospital... I developed yet another complication on my left thigh where they took a skin graft during the repair on the hole where the spinal fluid had been leaking. There's a seven-inch incision on my thigh and there is a 13 cm hematoma. It's very painful & makes it very difficult to move. The doctors prefer not to do surgery, but rather hope that the blood clot will re-absorb in the next 3-4 weeks. As it shrinks, the pain will lessen.

The doctors mentioned me going to rehab for a week. I told them that was NOT an option. I need to go home! So, they are arranging home health care with physical and occupational therapy. If all goes well, I should be home by Friday. I will still need IV antibiotics until December 21st, yet Steve is going to play nurse (changing 6 IV bags a day). So, I will be home for Christmas - yeah! I'm definitely looking forward to 2010. It's GOTTA be better than this!

I'm anxious to get my cataract taken care of. Too bad I couldn't have just had it done while I was laying around here!

Thanks to everyone for the prayers & hospital visits. It is so appreciated & has helped give Steve an opportunity to keep up with things at home. Tyler and Alyssa are anxiously awaiting my return... I have only been home five days since November 8th, when I left to go to MD Anderson for my surgery!

Mission Accomplished!

2009-12-08T22:55:00.002-06:00

Great news! Kim is out of surgery and all went well. They repaired two places where spinal fluid was leaking and cleaned everything out. They expect that she will be in the hospital another 5-6 days for recovery.

Finally!

2009-12-08T19:39:00.002-06:00

After waiting in the pre-op area for three hours yesterday, Kim's surgery was cancelled. The surgeon's other cases took longer than expected. So, she was rescheduled for today. The surgery started at 5:52 p.m.

Another surgery...

2009-12-07T07:54:00.002-06:00

After several days of having the lumbar drain in, the doctors decided that it was not working. An MRI showed that there is still a really big pocket of fluid (spinal fluid and blood) that runs all the way down her incision. They have decided to open up the incision and clean it out. They will also look for the hole where the spinal fluid is leaking so they can repair that. They are planning to do that surgery today. Keep prayin'!

Back in the hospital : (

2009-12-02T10:22:00.003-06:00

The past few days, Kim had been experiencing some leakage from her incision. Yesterday she went to our local hospital ER (Condell) to have it checked out. She fully expected to be given some oral antibiotics and be sent home. Turns out it is more serious than that. They talked about opening up the incision and cleaning it out. So, she decided she would rather be at Northwestern hospital in Chicago where all of her doctors are. She was transferred there last night by ambulance. The neurosurgeons there said that she is leaking spinal fluid. There is also a localized infection, but they think that can be controlled with antibiotics. She was being given three different heavy-duty antibiotics through her IV. The biggest concern is that if spinal fluid is getting out that infection could get in and cause meningitis. The most aggressive approach would be to open up entire incision to find where it is leaking & fix it. However, because she was not exhibiting any symptoms of being "sick," they are going to start with less aggressive approach. Last night, at bedside, they inserted a lumbar drain into her spine. They can extract spinal fluid in a controlled manner and hopefully divert it away from where it was leaking so her incision can heal (thus preventing the opportunity for infection). They will keep testing fluid to be sure there is no infection. She will remain in Neuro ICU during this time & they will re-evaluate in approximately five days whether this approach is working or if they have to open it up. The doctors said that this happens in 1-2% of cases, not because they did anything wrong at MD Anderson. They also put in another stitch along the incision where he saw a little hole.

Her legs hurt because of where the drain is located - so many nerves there along the lower spine. Other than that and having a headache, she's doing pretty well. Kim is pretty bummed to be back in the hospital, but is glad she is at NW being treated well. It is a VERY good thing that she went when she did. Untreated, it could have been much worse. Unfortunately, the kids won't be able to visit her. Like most hospitals recently, they are not letting kids under 18 visit patients due to the prevalence of flu.

Keep prayin', folks! We'll keep you up to date...

Home Sweet Home

2009-11-29T14:27:00.003-06:00

The flight went very smoothly. Steve and Alyssa met me at the airport with a big sign. She was smiling ear to ear and so happy to see me! It was strange to come home after being gone so long. Steve was very busy while I was gone. He put up the Christmas tree, rearranged some furniture and did a lot of organizing. He prepared a fabulous Thanksgiving turkey feast for us, after which we spent a quiet day together as a family. I missed seeing my extended family, but knew that the car ride would be too much.

Since then, we have just been hanging out, playing board games, watching movies and sleeping!

Now I am supposed to take it easy for 3-4 weeks. He warned me I would be really tired - I've been sleeping 10-12 hours every night. I am supposed to get a scan in 6-8 weeks & then will follow up with my internist and neurosurgeon here. I will also need to do physical therapy - don't know how often yet. It will help me build up my muscles in my neck and spine. I am missing quite a bit of the bone on the back of my spine (both from this surgery and my previous one) & therefore, my muscles need to work even harder to hold up my head. I will do exercises at home also.

Amazingly, my nausea is almost gone! The doctor hypothesized that if he could remove the pressure that the cyst was creating that there was chance the nausea would improve & he was right! I AM SO HAPPY : )

As far as starting on the Sutent chemo drug for my kidneys, we first need to determine if the cataract surgery (which I am anxious to do) will cause this to be delayed. Originally, I was planning to start it in mid-January. Now we will have to wait and see... I really want to get as much of my eyesight back as possible, so want to address the cataract first.

Thank you all again so much for your love, support and prayers...

Homeward bound...

2009-11-25T16:17:00.002-06:00

After a very long day at MD Anderson yesterday, Kim has been cleared for take-off!

She got her stitches out, her hair washed and blood taken. She spent three hours at the eye doctor. He thinks that it may be a cataract that has caused her recent reduction in vision. This could be removed as an outpatient procedure back in Chicago. That would be fabulous if it could help her see better!

Kim's upper back is very sore today, probably from the long day at the hospital yesterday. She is not looking forward to the jostling that will occur while traveling, but is very excited to see her family! Steve and the kids will meet her at the airport baggage claim this evening : ) (Wish we could capture that on video!) They will share a nice, quiet Thanksgiving dinner at home tomorrow. While she will miss being with her extended family, Kim knows that she will be too sore and exhausted for a bumpy car ride.

Happy Thanksgiving to all! I'm sure we can all agree that Kim's successful surgery is one thing we are all thankful for this year...

Kim has been sprung!

2009-11-21T12:49:00.003-06:00

Kim was released from MD Anderson yesterday afternoon and is now spending time with her family in Houston. The following update just came in from Kim and Aunt Jan...

No improvement on the eyesight and of course she has to deal with the pain from the surgery. Thursday Kim had an appt. with Dr. Gambos, an eye surgeon; after a 3 hr. appt. of pictures, ultra-sounds, angiogram and vision checked it showed enlargement of the optic nerve tumor, a moderate sized eye lesion; he feels her vision loss is coming from the macular area of which she had surgery in May. He's referring her to a local eye surgeon as he is more familiar with optic nerve tumors and wants her to get another opinion as whether she should proceed or not with treatment on the eye. Dr. Gambos feels that any sugery to the eye will worsen the vision rather than help with improvement. He recommends her to getting evaluated for another set of prescription glasses to see if that helps with the blurriness. He also feels alot of the blurriness is coming from the pain meds. she's on now.

Jeff left Thursday afternoon and Kim was so thrilled he was there and being so supportive and helpful to her. He helped with everything from feeding to repositioning to being her own personal physical therapist. Jeff is awaiting an appt. with interventional radiology to have a biopsy and possible laprascopic surgery to remove 2 large masses located behind his pancreas. Depending on what type of tumor it is, that will determine what type of chemo he will get. He was a very impressed with MD Anderson and now wants to continue all his treatments there.

She had an appt. with a dermotolgist for her easily bruised skin and he said it would be best to try 2 prescription lotions starting in one place on her arm to see if it works.

Basically, she got out of the hospital yesterday late afternoon. She is here til Tues. when we take her to see another eye dr. in the a.m. and get the sutures out at 1-1:30. On Tues. she will have labs drawn for a hemotology consult as precaution prior to starting the sutent chemo trial. Then she'll go get her hair washed one more time, and back here. Wed. she flies back to Chicago at 5:30pm and Steve will pick her up. Thanksgiving she'll stay home with her family as the drive to Debbie's is too long for her with bumps in the roads, etc. She'll miss seeing everyone but
realizes it would be too much for her.

The following photos were taken during the end of her stay at MD Anderson...

Kim with her brother, Jeff

Kim and Sheila

Kim getting a workout and enjoying some fresh air

Kim and Jeff with their Houston family

A hospital with good food?!?!

2009-11-17T15:51:00.001-06:00

From Suzanne: I just got off the phone with Kim. She is having a "sucky day," primarily because she was up and about for four hours earlier today & overdid it. She has a lot of back pain and is hoping to see the pain clinic people later today to get a better pain management plan in place. Overall, however, she sounds great & is in love with MD Anderson. There is constantly someone coming in to check on her and offer her something. She went to the beauty salon there yesterday & loved that. The food is great & it's like hotel room service. They do not bring it at a specific time, but rather you call and order from a menu whenever you are hungry & they deliver it prompty wearing tuxedos! How cool is that?!?! As I spoke to her, she was enjoying a milkshake and a Philly Cheesesteak sandwich.

Her sister, Robin, left today. Kim was so glad she came. It was nice to be together and she was able to give Steve some breaks while he was there. Kim's brother, Jeff, will be there until Thursday. Tomorrow, he will be meeting with Dr. Jonasch, the kidney doctor that Kim has been seeing there. They are hoping that he may also be a candidate for the chemo drug that Kim is supposed to start in approximately six weeks. They are trying to see if it is something they could do at the same time so that they would travel there together, share a hotel room, etc...

Kim will also be meeting with the kidney doctor before she leaves the hospital to talk about her plan. Additionally, she has an appointment with an eye doctor, who she hopes will have some options to offer her. A hematologist will also meet with Kim in order to understand her blood problem further.

Kim spends at least three hours a day doing OT, PT & rehab classes. She will have a walker when she first comes home because she is still unsteady on her feet. She is experiencing alot of numbness throughout her body, but they doctor believes it is from swelling and expects it to go away.

They are talking about releasing Kim from the hospital on Friday or Saturday. Then, she will go to her Aunt Jan's home for the weekend. She'll return to MD Anderson on Monday for suture removal, another MRI and therapy. The doctor wants to make sure everything looks good before she gets on a plane to come home.

All-in-all, Kim is very thankful for her decision to have the surgery in Houston with Dr. McCutcheon. She is still blown away by the fact that he was able to remove all four tumors and two cysts. At least that is one part of her body she can forget about for awhile! She asks that you all keep praying for a speedy recovery!

Steady progress...

2009-11-15T10:57:00.004-06:00

Kim continues to do well! She has been talking, laughing and doing laps around the nurses station with her hot therapist.

Kim's scar... Ouch!

Steve heads home today to be with the kids and Kim's brother, Jeff, will arrive in Houston. Hopefully, Kim will be out of the hospital by the end of next week!

Awake and laughing, once again!

2009-11-14T10:46:00.002-06:00

Steve says that Kim is back to her old self today! She is awake, talking and laughing... Apparently it was just the medication that had made her so "loopy". Great news!!!

Zzzzzzzzzzzzzzzzzz.....

2009-11-13T19:54:00.004-06:00

Today, Kim seems to have taken a bit of a step backward. She has been rather lethargic and slept most of the day. Perhaps she overdid it yesterday or is simply trying to make up for the previous two days with little or no sleep. The good news is that the MRI last night, as well as the CT scan today, were both negative - this means no bleeding or swelling! Her vital signs are also good. They are hoping to see the neurosurgeon tonight before he leaves the hospital.

Hopefully Kim will have more energy tomorrow and they will be able to get her outside for some fresh air and sunshine. Keep her in your prayers...

Out of ICU...

2009-11-13T08:47:00.002-06:00

Accoring to Steve and Aunt Jan, Kim continues to do amazingly well. She had a 2.5 hour MRI last night & we will get those results today. They moved her out of ICU and into a regular room! Aunt Jan hopes to get her outside in a wheelchair today to enjoy the Texas sunshine. Anyone who knows Kim knows how much she loves the sun : )

If anyone wants to send cards, they are asking that you send them to Aunt Jan's house. That way, they will not get lost if she is discharged from the hospital sooner than expected.

Jan Busse
447 Chattanooga Pk
Conroe, TX 77302

More photos...

2009-11-12T12:39:00.002-06:00

Kim - right after surgery

Kim - today

Recovery begins, part 2...

2009-11-12T11:59:00.002-06:00

From Steve:
It's 11:30am. 11-12-09
Kim's first night was slightly rough because they did not want to give her too much medication to be able to access her better.

Robin and I got to the hospital about 10:00am. Kim is doing OUTSTANDING. Still some discomfort with neck pain, which is to be expected. Some nausea. Physical therapy came in and Kim walked down the hall with them. PT said she is doing so well, they thought she would be gone by the end of the weekend. We'll see about that.

Should be moving out of ICU today.

Recovery begins...

2009-11-12T11:17:00.002-06:00

Just received this update from Kim's Aunt Jan, who just spoke with Robin:

- Kim says on a scale of 1-10 her pain is a strong 8
- Nausea is bad as it is normally for her and especially after surgery
- Physical therapist was there and had her sitting on edge of bed
- Will move her to chair
- Dr. hasn't been there yet
- Had a bad night; didn't sleep well and they don't give much pain med. after brain surgery so they can monitor
- She wants Robin to order her a bagel and orange tea so she is hungry
and wants to eat
- Robin will reinforce to Kim everyones' prayers and thoughts

Surgery was a success!!!

2009-11-11T19:13:00.002-06:00

Just got off the phone with Steve. Kim's surgery ended around 5:30 p.m. and they have seen her in ICU. She is swollen & experiencing pain, but talking up a storm! (Hard to believe - LOL!) She is VERY excited about the success of the surgery. She can feel and move all of her extremities & the surgeon said it could not have gone better! He was able to remove all three tumors - 2 of them that were feeding two cysts - as well, as the third tumor in her cervical spine. He also shaved off some bone that was sticking out from a previous surgery. The doctor anticipates that she may be ready to leave the hospital in 6-7 days! It appears that all of our prayers were answered...

Surgery update...

2009-11-11T15:41:00.005-06:00

Just talked to Steve. Basically he is getting very basic info from nurse. Vital signs good , at the tumor, working on it. He's hoping to get a little more info at 6:00 but we probably won't get any detailed info until the surgery is over and the surgeon talks to Steve. Will continue to post when there is any news...

Surgery update...

2009-11-11T12:55:00.000-06:00

From Steve: OK, the latest update as of 12:00. They are at the spot of the cyst and tumors. They were using ultrasound to make sure before they cut through the late thin layer that they are in the right area.

This is by far the most vital part of the surgery. The next update will let us know whether they are able to get the tumors or if it is too dangerous to mess with. Pray for no bleeding. This is the toughest part of the whole day. We are very anxious.
Nest update at 2

Surgery update...

2009-11-11T11:18:00.000-06:00

OR nurse said they started the case at 9:04 a.m. No real update on the procedure. Next update will be 12:00 noon.

Surgery update...

2009-11-11T10:10:00.000-06:00

They took Kim into the OR around 7:30 a.m. According to Steve she was slightly nervous, but VERY confident. The first update from the nurse should come around 10:00 a.m.

Tomorrow is the big day...

2009-11-10T22:17:00.001-06:00

From Suzanne: I spoke with Kim around 8 p.m. this evening. She had just finished a long day of being poked and prodded in preparation for her surgery tomorrow. Steve arrived in Houston today, as did her sister, Robin. They were having dinner at the Olive Garden before heading to the hotel for a quick night's sleep. Kim needs to be back at the hospital at 5:15 a.m. to get ready for surgery. The doctor plans to start the surgery promptly at 7:00 a.m. and believes it will last a minimum of 8-10 hours.

The surgeon first plans to remove three of Kim's four tumors, as well as draining the attached cyst. There is a fourth tumor (the largest one) that is deeper in her cervical spine and may be tricky to get to. The doctor really would like to remove it, as he feels it could be causing swelling in her spinal cord and contributing to her numbness. However, he will have to determine once he is in there whether he can remove it safely or if the risk is simply too great. As I said before, the surgery will probably be at least 8-10 hours and probably much longer if he addresses the fourth tumor. (A few days ago, the doctor completed his longest surgery ever - 20 hours - on another VHL patient.) Steve will update me when he is able & I will post her status on the blog as often as possible.

Keep praying and keep watching the blog for updates...

I'm leaving on a jet plane...

2009-11-07T16:07:00.000-06:00

It's been a very busy week getting ready for surgery. Today I went downtown for my pre-op MRI scans. I leave for Houston tomorrow morning. I'm still very confident in the surgeon, but the anxiety is starting to build as the surgery gets closer. To add to the stress, Steve lost his job this week*. However, looking at the bright side - my kids will now have at least one of us there for them the week following the surgery. I spoke with both of the kids about my surgery and me being out of town for so long. Tyler seems to be handling it well, yet he still continues to hold in a lot of his feelings. My little drama queen, on the other hand, has been very emotional this week & I'm somewhat worried about her getting through the next three weeks. I spoke with her teacher and we started e-mailing back & forth. This will be our way to keep in touch while I'm gone. We are trying to set up skype-ing as well.

And now, some good news! My brother and sister, after not being able to be with my brother when he passed away, were very determined to come out for my surgery. They both got tickets today. My sister Robin will fly out the night before my surgery and stay for a week. My brother, Jeff, will come on Sunday (the day Steve leaves) and stay until the following Thursday. My high school friend will also still come the 18th-21st. So don't worry, I will not be alone!

On a completely different note... apparently, there is bag containing funeral cards from the night of my brother's wake that is missing. It is a blue Ahlgrim's bag. If anyone has seen it, please let us know.

We will try to update the blog as often as possible to inform everyone about the surgery and my recovery. Just keep praying!!!

(* Steve has over 20 years of medical sales experience. If anyone has any leads or contacts, please let him know! e-mail: sgillespie62@att.net)

Travel plans for Houston

2009-11-02T12:28:00.000-06:00

Regarding my upcoming surgery at MD Anderson in Houston, some of the plans are as follows:

I fly out this Sunday morning (11/8). Steve will join me Tuesday morning through Sunday afternoon (11/10-15). My sister-in-law, Laura, will be traveling in from Detroit to stay with the kids. If you don't mind, I will be leaving some of your names and numbers for her to call, as she is very unfamiliar with this area and may need some help with driving kids or errands. She will be flying in Monday evening the 9th and staying through the 15th, when Steve returns. We are now covered for the first 8 days of my 15 day excursion! After that, some friends have offered to cover when Steve needs to travel the following week.

I plan to return home on Wednesday, November 25th for Thanksgiving, assuming all goes well! I have an aunt and uncle, plus several cousins, who live about an hour from the hospital in Houston and will be visiting me while I am there. My high school friend, Sheila, will be coming from Atlanta to visit me from Wednesday the 18th through Saturday the 21st.

Thank you for all of your well wishes. I will update the blog as often as possible following the surgery! So, this will be the place to get the most up-to-date info...

On another note... after speaking with several doctors, they feel it is possible that the pressure of the tumor on my brainstem is what is making my eyesight so bad lately & that once the pressure is relieved, at least some of my vision may be restored. Let's pray that is the case!

Next steps...

2009-10-25T17:32:00.000-05:00

First of all, there has been a slight change in plans for tomorrow. The luncheon following the funeral will no longer be at Vittorio's. It will now be held at the Millrose Inn - 45 Barrington Rd, South Barrington.

During the past few days, I have been busy sorting through photos, making arrangements, ordering flowers, writing a eulogy, etc... Once the funeral is behind me, I need to start making plans for my trip to MD Anderson in Houston. I will go down there on November 8th and my surgery will be on the 11th. I strongly weighed the decision of which doctor I was most confident having perform my surgery. I decided that if both of them were in the chicago area, I would choose Dr. McCutcheon hands down. While I wish I could be done locally, I feel that the most positive outcome far outweighs the inconvenience of geography. After speaking with both surgeons for about another hour each, I feel confident in my choice to pursue MD Anderson. Dr. McCutcheon makes the surgery sound so simple, like I am having my appendix removed.

Regarding the urgency of the surgery, he told me I could wait another month. However, now that my brother has passed on, I feel it best just to get this over with, so hopefully, I can enjoy my holidays. He told me to expect to stay two weeks in the hospital and that I should be able to fly home the day before Thanksgiving. He said they would start rehab & physical therapy there. He'll also take out the staples and do an additional scan, to make sure I am safe to fly home. He feels I can then follow up with my surgeon here at home. I will then go back to see him about six weeks post-op, before starting the chemo. I'll get all my baseline scans done while I am there (sometime in January).

It may be hard for you to believe, as so many horrible things have happened in this past month (on top of my brother, both of my children have been really sick), but we received more bad news on Thursday. We called Steve's parents with news regarding my brother & found out that his father had a mild heart attack on Tuesday and was in the hospital. They hadn't wanted to bother us with the news. He remains in the hospital with plans for angioplasty on Tuesday, October 27th. We spoke with him this morning. He no longer has chest pain and feels that he could have gone home these few days before his procedure. Add him to the prayer list.

Once again, another thank you to everyone for the outpouring of support...

Steve's Funeral Arrangements

2009-10-23T18:30:00.000-05:00

Funeral arrangements for Steve Kolinski...

Wake
Ahlgrim Funeral Home
201 N. Northwest Highway in Palatine
Monday, October 26th, 3:00 - 9:00 p.m.

Funeral
A short service will precede the funeral at the Ahlgrim Funeral Home on Tuesday at 11:00 a.m., followed by burial at St. Michael's Cemetary at approximately 12 noon. There will be a short graveside service.

Following the funeral, there will be a luncheon at Vittorio's Restaurant in Palatine.

In lieu of flowers, the family is requesting donations be made to the VHL Family Alliance.

(Arrangements will be listed in the Herald and the Chicago Tribune on Sunday.)

Kim will post more tomorrow when she is able. In the meantime, she wants to thank everyone for their kind thoughts and gestures...

Sad news today...

2009-10-22T16:20:00.000-05:00

Kim's brother, Steve Kolinski, passed away today, peacefully, at 2:35pm. Kim was at his side.
When there is more info available, it will be posted here...

So many questions, so little time...

2009-10-14T12:06:00.000-05:00

Starting out with my brother Steve's condition... He continues to deteriorate. The only command he can follow is an occasional movement of his left arm and opening his eyes to his name. He follows you around the room with his eyes and appears to understand what is going on. His EEG is normal and shows no brain damage or seizure activity. They feel he is a mind trapped in a body unable to communicate. Regarding rehab, he is no longer a candidate as he cannot follow a command - meaning he can not rehabilitate. They told us that even if he went to a rehab, it would take a miracle for him to even say his name or willfully move his body again. He has a feeding tube in for nutrition, as well as IV's to manage his cardiac issues. He also has two blood clots, which they are unable to treat as it could cause a bleed to the brain. They did take him to surgery on Monday morning to put in a larger shunt to drain the fluid from his brain. They successfully completed that. Last night he went into respiratory distress and is now on oxygen. He is also being treated for pneumonia. We met with many physicians regarding his living will and his wishes. It has been decided that if he does not become more alert or improve in the next week, we will need to follow his wishes and turn off his feedings. Unfortunately, none of his family members are happy with this option. We feel it's in God's hands and hope that it doesn't come to that. We are planning to transfer him to hospice next week if need be.

Unfortunately after what has transpired in the past two weeks, I am questioning the urgency of my brainstem surgery. As confident as I was, I have seen just how dangerous this area (the brainstem) is. I wouldn't wish this upon anyone, let alone myself. My internist feels the neurosurgeon at Northwestern is highly respected in the field and MD Anderson may be no better - that the risk is so high of having even temporary damage. My internist and neurosurgeon here feel that I should opt to drain the cyst, rather than remove that and the tumors. This could buy me some time, but it's likely the cyst will refill & they cannot predict how long that will take. It's really not treating the problem. I thought I was 100% confident in MD Anderson's plan, yet the more I read and the more doctors I talk to, the more questions I have. I need to be sure I'm making the right decision. I also know that I don't have a lot of time & risk complications the longer I delay treatment...

I know many of you are thinking of me and have been calling. I want you to know how much I appreciate your concern. I'm just so overwhelmed right now that I'm not able to speak to everyone personally. I need to use this blog as my primary means of communication right now. I hope you understand. Please keep your thoughts and prayers coming & I will continue to update this blog as things change. Love, Kim

It's been a sad day....

2009-10-08T19:05:00.000-05:00

I saw my local kidney surgeon this morning. He agrees with the recommendation of Dr. Jonasch at MD Anderson - that it is best to proceed with the brainstem surgery first, wait 3 months and then go on Sutent (the chemo drug) until I find a kidney transplant donor. After looking at my labwork, renal scan and function of my kidneys, there is no way to remove my left kidney & allow my right kidney to function alone. My right kidney is not functioning well enough to handle the job on its own. Therefore, a transplant or dialysis are the only options. We looked long and hard at the scans trying to find tissue he could save on the left kidney but we couldn't. The whole thing is covered with solid cystic lesions. The danger of not removing the left kidney soon is the possibility of metastasis (because these tumors are malignant). If the chemo does not work right away to shrink the tumors and cysts of the left kidney, then I would need to do dialysis until a kidney is available.

Regarding my brainstem surgery, I am trying to get the date moved up so that I will be home before Thanksgiving break. Also, it would allow me to address my kidney issue sooner. I'm starting to feel nervous about waiting too long.

I finally found out why my brother has not been improving this past week in ICU... He was found to have swelling of the brain and hydrocephalus Saturday afternoon so severe that it caused a stroke to the brainstem. They found this out accidentally while doing a pre-op MRI scan this morning in preparation for another shunt surgery. Basically, your brainstem controls your swallowing, movement & some of your speech - these are the areas that have been affected with him. He can't move his right side & his speech is soft and garbled. The doctor was very sorry to say that his condition may never improve and he will require lifetime rehabilitation.

Keep the prayers coming....
Kim

Scheduled for surgery...

2009-10-07T20:23:00.000-05:00

Once again, so sorry for the late entry. Life has been somewhat of a roller coaster ride lately and I want off!

My most recent doctor appointments have shown many serious increases in tumor & cyst size. Once again I find myself requiring immediate action. I have been working on developing a plan to follow through with the surgeries in order of priority. My optic nerve tumor continues to grow and is causing further decrease in my vision. I can no longer see the large "E" on the eye chart. Even with corrective glasses, I am considered legally blind. There are still no treatments or chemo therapies avalable at this time to help shrink or stop my tumor from growing. They feel a new drug won't be available for at least 9-12 months. Please pray for something sooner!

As for my abdominal scan, my pancreas has been totally replaced by cysts and continues to cause digestive problems, e.g. nausea and malabsorption of nutrients. Therefore, I have a decrease in my energy level and have lost weight. Last week I started on pancreatic enzymes to help with my digestion and absorption. My kidneys are also a mess. I have a total of one kidney remaining - 2/3 on the left and 1/3 on the right. My right kidney is only functioning at 15% of the total and my left picks up the other 85%. Unfortunately, it is the left kidney they want to remove due to large cystic masses and renal cell in that area. I am hoping there is some possible way they can save a portion of that kidney so I can avoid dialysis or a transplant. I see my local kidney surgeon tomorrow and am awaiting opinions from both NIH and MD Anderson.

My biggest and most critical dilemma lies in my brain stem and upper cervical spine. There now are two small tumors located at the base of my brainstem (the medulla - the worst spot for it to be). Attached to one of the tumors is a large cyst, about 20 times the size of the tumor, which is causing me many problems. About six weeks ago, I started experiencing numbness down my whole leftside, from my shoulder to my foot, as well as numbness and tingling in both hands. I've also noticed an increase in headaches, nausea and loss of balance. I've completed three neurosurgical opinions and have chosen to have surgery at MD Anderson in Houston. It is scheduled for November 11th, although I'll need to go earlier for testing. The surgery should last a minimum of eight hours and will require a two week hospital stay. One reason I chose this hospital is that I have family in the area, who can stay with me once Steve needs to return home to the kids. The main reason I chose them is that I was extrememly impressed by the doctor, not only his expertise, but also his wonderful bedside manner. There is a 5-8% risk of permanent neurologic damage with this procedure. However, if I do nothing, there is a 100% chance of neurologic damage/paralysis.

Start praying now & I'll continue to update you as things change. Lately, that has been daily! Also, please add my brother, Steve, to your prayer list. He had brain surgery last Wednesday and remains in neuro-intensive care with multiple complications and is still semi-comatose.

Thank you again to Nancy for being my travel buddy (and candlelight dinner buddy)! I couldn't have found my way without you...

Kim

End-of-summer Update

2009-09-11T16:52:00.000-05:00

Hope all is well with all of you & your families & you got to enjoy your summer! Just like most of you, August was spent trying to grasp every last minute of the "summer that never was." Unfortunately, that also meant going back to school & the start of a routine again. Wah...........

Tyler started high school at Libertyville High School & loves everything about it except for the homework. He plays soccer for their sophomore team & will go back to travel Eclipse soccer for the winter & spring sessions. Alyssa is now in the 1st grade. She loves it too & looks forward to it every day. She's just like me - a social butterfly & loves playdates every day. Alyssa is finally gone for a full day, leaving me MUCH NEEDED to myself to get things done! Steve continues to travel every week & covers the midwest sales region. He tried to stay home one more day a week to do office work, which is greatly appreciated & really helps when I am having a bad day.

Prior to school starting & before I got my glasses for distance, we took a weekend trip to Wisconsin Dells. We went with my relatives & stayed at The Wilderness on the Lake in 2 rooms for 18 people. What a blast! A comical part of the trip is when I was walking around with my camera & instead of taking pictures of my family - most were of strangers! Funny how the kids look so alike when their hair is wet, although it didn't help that I could barely see them! One man was so flattered that I wanted photos of his son & daughter. Little did he know!!! (ha ha)

Medically, things have been going a bit downhill lately. Following May's surgery, my vision was progressing well for about 8-10 weeks & then I noticed things to be more blurry & my close vision more out of focus as well. I saw my eye doctor, Jack Cohen, August 7th & he confirmed what I was hoping was not really true. The macular hole remains closed & the large lasered area is healing well also. The problem lies in the optic nerve tumor. The change in the size and shape of this tumor is what is causing my vision to change. He told me to proceed with corrective glasses for distance & close vision. However, they will not work well as most of my vision loss is not correctable. I got my glasses the following week & again this was confirmed. I see great for about 10 feet & then it's very grainy & I have many blind spots even within the close vision range.

Two weeks ago, I attended Tyler's high school soccer game & couldn't even locate a single player from our team. It was very frustrating. I'm going to try binoculars the next time. I rented an overhead projector-like scanner to use to read & see photos, yet am trying other products available before I choose the best equipment/magnifiers that work for me. I am working with the State of Illinois Department of Rehabilitation (vision department) with a woman named Elizabeth. She is also legally blind - which is how they diagnose me. She visits about every two weeks & developed a plan for me.

So far, I learned most of the braille alphabet & some basic words. I am finding that I'm a visual learner - not auditory or tactile (I HATED IT!). Next week, I'll try the walking cane. I have sweaty palms just thinking about it. I get around familiar places so well, but would need to use it if I was travelling somewhere strange at night (unless I had an escort so I wouldn't walk into anything). As a matter of fact, I went to Great America in August with my cousins and all the kids. Once it was dark, I was tripping a lot more & very uncomfortable. On the way to the parking lot, I walked straight into a handicap sign & went flying over a curb! I cut myself in several places and got a real bad headache. They really need to watch where they place those signs (LOL), although I did get a good laugh out of it.

I'm again looking for a chemo trial. Sutent doesn't appear to be the answer & hasn't helped anyone's eyes as of yet. It's also been found to be very toxic & I already feel bad enough without adding in another drug. These past two months, in addition to worsening vision, I've had an increase in nausea, headaches, dizziness, numbness on my left side & general achiness. I've also lost 10 pounds & am no more active, nor had a change to my diet. Recently, my lab work showed inflammation of the pancreas, which is probably contributing to some of my symptoms. My low potassium is probably causing some numbness as well as achy joints & fatigued muscles. I had an MRI of my abdomen, brain & ear on 9/10 and go next week (9/16) to get MRIs on my complete spine, as well as repeat labs. By next week, I should have some answers. On Thursday, I see my neurosurgeon & internist.

On a positive note, I have some trial software I'm trying called ZOOM TEXT which enlarges the computer print & will even read my e-mail to me. It costs about $1100 to purchase & I have about 40 more days to try it. As for reading, I can't read large print yet, but have read 5 books on the Kindle by using the audio & following the words. I love it! Thanks again to all who contributed : )

Sorry this is so lengthy. There has been a lot going on since my last entry! I'll try to blog more often & say less. Continue to keep me in your thoughts and prayers.

Thanks again, Kim

Vision Update

2009-07-26T16:24:00.000-05:00

July 26th
Well, I did go see the low vision specialist. She recommended progressive glasses (tri-focals). I ordered them that day and just picked them up on Friday. Oh my God, how nauseating. Obviously, I still have many blind spots and am having difficulty finding my focal point for far and near vision.

They told me to try them for a few weeks, yet I think I'm going to trade them in for distance only and get a separate pair for reading. Say your prayers the vision with these glasses starts to work better. I know I am blessed to see at all, but now I'm greedy and want to see the world again like I used to.

Today I received an ClearView machine at the house for a week long trial. It is similar to an overhead projector all in one. It can magnify up to 50 times the size of pictures and print. The screen is 22 inches and allow me to adjust the magnification very easily. I can also now see the words better on my Kindle. Yippee!!

Lots of changes to get used to these days. As always, all your thoughts and prayers are greatly appreciated. Going to try a movie tonight with one of my neighbors. Hope the new glasses work well.

July 13th - late entry
Today Steve and I went to see my eye surgeon. My vision today is 20/240 and still unchanged from 4 weeks ago. The good news is the macular hole remains closed and healed. The optic nerve lesion is unchanged. The large lesion has shrunk, scarred and no longer bleeding. The unfortunate news for me, is that he felt that since my vision was unchanged it may be the balance of my improvement.

He said the neurons would continue to redevelop yet he couldn't guarantee anything . Steve and I decided I need to remember that I heal slowly and will remain optimistic. He recommended a visit to a low vision specialist. I have blind spots still in my mid vision. I return for my next check up in 8 weeks.

Kim Gillespie

2009-07-03T10:51:00.000-05:00

WOW ! Here is the latest. On July 27th we had a huge turn out for the 5K4Kim Walk at Blackwell Forest Preserve. We can not thank everyone enough for participating in this event. The weather was great and everyone enjoyed the walk. Kim and I want to give a special thanks to all of the sponsors who generously donated for the event.

Restaurant.com
McGrath Lexus (Westmont)
Sound Sales Ltd. (Elmhurst)
River North Dermatology (Naperville)
Panera Bread
Glen Saniford (photography)

And of course we just can not express our gratitude enough for the ladies who put this all together. We know it took many hours of their busy lives to pull off such a perfect event. Thanks to Jeryl FoulkesValdez, Diane Tyriver Lipuma, Missy Poulos, Julie Foulkes Piel, and Denise Kenston Blaszynski.

The money raised by the walk will be a tremendous help for us with all the past and future medical bills. Again, thanks to everyone for your time and concern for our family.

Many of you say that Kim is an inspiration to you, yet she could never have gotten through the many years of medical problems without all of the phone calls, e-mails, visits and thoughtful gifts from her friends and family. Hopefully she is going through the final phase of the post surgery recovery. The gas bubble that was inflated in her eye to help the healing process is now started to break up and should be totally gone with in a few weeks. We are hoping that after the bubble is gone that she will start to gain better sight and we can get back to a somewhat normal life.

Thanks again for all your thoughts and prayers

Steve

Photos from 5K4KIM...

2009-07-02T17:42:00.001-05:00

Still improving...

2009-06-22T18:07:00.000-05:00

I returned to see my eye doctor last Monday, June 15th & came home with good news. He was very impressed that the macular hole has continued to remain closed. He was also highly impressed that there was no change in the size of the optic tumor. However, there was some bloody drainage around the lasered area, yet he feels it is 60% healed so far. The floaters I see are a result of the drainage. Unfortunately, although he is impressed, I am still frustrated that the gas bubble size is unchained from my last appointment. That continues to cause me trouble walking into objects below chin level. I also have very bad night vision. This should all get better when the bubble goes away. As for restrictions, he told me there are none. So, I am trying to get out of my house a bit more these days - moving slowly, of course! This whole healing process should take another 1-4 months.

I'm glad to see the days getting sunnier, as I feel I've been living in the dark! Hope everybody enjoyed Father's Day. Looking forward to seeing those of you that will be attending the walk this weekend! Thank you again for all the help with meals, personal assistance for myself & just general care for myself and the kids, especially with my traveling man... I could not have done it without you all.

On another note... the last month has been busy for the family. Tyler graduated 8th grade. Alyssa graduated Kindergarten and performed in her first tap recital. These are both on videotape for me to view when my vision is better!

Things are lookin' up!

2009-06-01T15:24:00.000-05:00

I saw the doctor again today. He said that the bubble in the last 10 days has gone from 50% to 25% and that I no longer need to keep my head in a down-facing position. You have no idea how happy this makes me!!! He said that I should be starting to see more and more over the next few weeks as the bubble completely dissolves and the bloody fluid gets reabsorbed. I was so shocked that I could actually see the eye chart on the wall. I couldn't actually see any letters, but I could see that there was a chart there - major progress!!! As a matter of fact, I can now see from chin-level up, although things still remain blurry and distorted (due to bloody drainage, the bubble and trauma to the retina). I still continue to have night blindness. It's like my house is a funhouse at night. The doctor says this is very common, which made me feel better.

I follow up with him again in two weeks. In the meantime, he told me to move slower & continue to use help. I am now using a sippy cup because I spilled three glasses of water yesterday!

As always, I'd like to thank you for all your "meals on wheels" (they've all been delicious and well-received by the kids) and help during the day. Special thanks to Brenda Shinn for getting Alyssa and I all beautiful for Alyssa's recital on Sunday! Thanks also to everybody that is signing up for the walk in June. If you aren't familiar with this, you can view the details at www.wecare4kim.com

Slowly but surely...

2009-05-22T17:04:00.000-05:00

Kim visited the eye doctor again today. He says that she continues to improve and that approximately 50% of the bubble remains. He told her that she could keep her head up 50% of the time now (woo hoo!), but during the other 50% it has to be down ALL THE WAY (like when she's in her special chair). He said her vision will continue to improve, but slowly. She will still need help for about a month he estimates (though not 24/7 as has been required up to now). We will be adding more helping times to the schedule next week...

Kim wanted to thank everyone who has come over to help or brought flowers, great treats & dinners! A BIG thank you to Angela Nickel for planting flowers in her outdoor pots.

Good news...

2009-05-15T13:23:00.001-05:00

Kim saw the eye doctor this morning & he said that her fall did not cause any permanent damage to her eye. As he suspected, the fall caused some of the bloody fluid in her eye to mix with the bubble (which had been clear). Now, she is looking through murky, bloody fluid & her vision is negatively affected. He says that the hole is still closed and the pressure in her eye is good. There is about 65% of the bubble left. They like the patients to remain face down until it's about 50% remaining. She will see the doctor again next Friday and hopefully she will be cleared to sit up. Woo hoo! She mentioned something about having a party when that happens and celebrating with martinis : )

Needless to say, Kim is extremely relieved that there was no damage. It's annoying that she cannot see better, but the most important thing is that the hole closes properly.

Kim's little mishap

2009-05-14T16:24:00.000-05:00

On Monday evening (5/11), Kim was sitting on her bed reaching for a drink on the ledge behind her. She was closer to the edge of the bed than she thought & fell off the bed headfirst onto the floor. Since then, she has had a headache and been dizzier than normal. Additionally, her vision is less clear than it was before the fall. Kim has spoken with the doctor, who is pretty sure that the fall did not cause anything terrible to happen (such as opening up her macular hole). He hypothesizes that the blood remaining in the bottom of her eye (as a result of the lasering he did) came loose and has now mixed with the clear fluid in her eye. Therefore, she would now be looking through this murky liquid, reducing her clarity. She will be going to the eye doctor in the morning to have him check it just to be sure. She is, with good reason, concerned about the change in her vision and will be more comfortable once he looks at the eye. Never a dull moment! Keep praying!

On another note, thank you again for all the help this week. A HUGE thank you to Aunt Mary Ellen who came to stay Wednesday through Friday while Steve traveled!!!

We will post again tomorrow after the dr. visit!

Things continue to improve...

2009-05-11T18:16:00.000-05:00

Today, Kim had a follow-up appointment with her eye doctor. He says that things are looking good and she must have been very good about keeping her head in the proper position!!! He said the pressure in her eye is normal, which is good. The hole is still closed & the place he lasered looks good (no further bleeding). Her occular tumor is unchanged. She will see the doctor again next Monday and if things keep improving at this rate, she should be able to keep her head up more. She is DEFINITELY looking foward to THAT : )

Regarding her eyesight... Currently, Kim can see about 4-6 inches in front of face (not real clearly, but she can see shapes and colors). The doctor expects that in about 3-4 weeks she should be able to see further, e.g. seeing the television. It may take 3-6 months until she is able to read & even longer than that to see how much total vision she regains. It's unclear what percentage of her vision will ultimately return, but the doctor feels really good about how the surgery went and her progress thus far.

Kim wanted me to be sure to thank everyone who has visited and brought yummy things to eat! She is overwhelmed by your generosity and thoughtfulness...

: ) Suzanne (Kim's secretary)

One day at a time...

2009-05-08T09:03:00.000-05:00

Kim continues to do well! As well as can be expected when you can't really see and have to stay in an awkward position, that is. I spent some time with her yesterday & she seemed in pretty good spirits. They moved her chair outside on the patio for a while and she was able to soak up a little sunshine. Steve says she has been able to sleep pretty well too.

The best news is that she has already been able to see a little bit of light/shadows & she could tell her Starbucks straw was green! That seems to be a good sign. She had not expected that to happen for a while...

She wants you all to know how much it means to her to have you all thinking of her, praying for her, and volunteering to help her & her family. They are often unable to answer the phone, so please do not worry that something is wrong if there is no answer. I will continue to post on the blog occasionally so that you know all is well!

: ) Suzanne

Recovery, Day #1

2009-05-06T10:09:00.000-05:00

Everything appears to have gone fine with the surgery. During the surgery, the doctor also did a lot of lasering on my largest eye tumor, which was problem what caused a lot of this problem to begin with. The only glitch was when I didn't get pain medication after surgery because my eyes were closed and the nurses assumed I was sleeping! HELLO!

I was able to sleep off and on during the night. My eye still hurts, but the medication is keeping things under control now. I feel fine when I am laying down, but the motion bothers me when I have to move or get up to go to the bathroom. It is especially weird because I am not familiar with the room here.

I will be leaving the hospital around 11:30 and then going across the street to see the doctor before I head home. Thank you for all of your thoughts and prayers!

Surgery went well!

2009-05-05T16:25:00.000-05:00

According to Steve, Kim went into surgery around 12:40 (about 1 1/2 hours late) and the procedure took about 1 hour 20 minutes. The doctor said that everything went well! Kim is now in her room and experiencing some eye pain, but has taken some Rx that will hopefully kick in soon! She will be spending the night at the hospital for observation and will return home tomorrow after a visit to the eye doctor. Steve is going to be heading home soon to take care of the children and her friend Suzanne is going to be staying with her tonight. Keep praying for a full and speedy recovery! Thank you also to all who have joined the Lotsa Helping Hands community and volunteered to help : )

The bump (oops, I mean hole) gets bigger

2009-04-30T14:45:00.000-05:00

As of Friday, my Dr. told me to keep a close eye on my vision (nice pun, eh?) and update him if anything changed. Unfortunately, over the weekend, I was noticing increased bluriness, "bugs/floaters", and wavy walls. There was also increased pressure in the eye. I saw the Dr. Tuesday afternoon. After examining me, he was shocked to see the drastic changes in my eye over such a short period of time. What had happened is that apparently the pressure I felt in my eye was the complete detachment of the macular gel from my retina, which unfortunately has caused my macular hole to double in size. That is what caused the significant change in vision. The only treatment for this is to do a vitrectomy. Below is a more detailed description of the surgery...

Vitrectomy for Macular Hole
Detaching the vitreous gel from the retinal surface is an important part of macular hole surgery. In addition, there are frequently thin membranes on the retinal surface surrounding the hole, which are peeled in order to release traction on the retina and allow the hole to close. Perhaps the most important part of the surgery, however, is filling of the vitreous cavity with a bubble of gas. This gas bubble must press against the macular hole in order for the hole to close. Since the macula is located at the back of the eye, the eye should be looking downward in order for the bubble to float against it and exert the maximal amount of force. In order for this to occur, the patient must remain in a facedown position after the surgery. For most patients, 2 weeks of facedown positioning is recommended. The macular hole can be closed successfully in the vast majority of patients. This is usually accompanied by a significant improvement in vision and reduction of distortion. Most patients, however, will not recover all the vision that was lost, and will recognize some limitation.

As with any surgery, vitrectomy has risks. Cataract, retinal detachment, high intraocular pressure, bleeding in the eye, and infection are among the possible complications. Cataract is the most frequent complication of vitrectomy surgery. Many patients develop a significant cataract within the first few years after vitrectomy.

The general population has a success rate of 90% with this procedure, but with VHL their experience shows this may be closer to 50%. It's unclear why - some speculate that it is because there is so much more going on in the eye, as well as scar tissue from previous procedures.

As of now, I have ordered my post-surgical equipment (a massage-type chair and a face support to help me hold the recommended position). I will be seeing my internist tomorrow for hopefully some good drugs to take after this, as well as EKG, bloodwork, etc... Surgery is scheduled for Tuesday morning. I hope to be able to spend one night at the hospital, but unsure whether insurance is going to clear that. Now I need to get my house in order so that over the next few months when I can't see, I will able to find things (or direct others as to where to find things) for the kids. I am overwhelmed by the thought of this and am trying to figure out how I am going to spend the next few weeks of my life facing the floor with no vision (and two kids). Steve is taking off one week of work & we will play it by ear after that. For now I am planning to listen to books on tape, listen to the tv, and hopefully chat on the phone (will have to figure out how to make that work). Some friends have talked about organizing meals and visits. It's hard to know right now exactly what we will need, but am sure it will be very much appreciated. I will let you know what I need after I get home.

Please check back on the blog late Tuesday or Wednesday to see how things went... If anyone has any uplifting audio books they would like to recommend, I'd love it. Keep me in your prayers!

P.S. I just received a package from my college friend, DiTy! It was a iPod nano and iTune gift card. This will come in very handy. Any song recommendations or help setting it up would be appreciated.

Another bump in the road...

2009-04-24T17:40:00.000-05:00

After returning from MD Anderson, I spoke with my local eye Dr. about the hopeful options they presented to me there. Unfortunately, he feels that all of the options they presented to me there (other than the Sutent chemo drug) have significant risks of further vision loss. Because I only have one eye, he feels it best to try the Sutent drug and not pursue any of the other options at this time. I also spoke with a woman who is the head of the VHL Alliance. She is extremely knowledgeable on VHL and became a spokesperson after losing her husband 18 years ago. She also has a son living with VHL who is blind, after having tried all of the options they presented at MD Anderson. He also tried Sutent with no positive results. I plan to speak with him personally later this weekend. Needless to say, I am so disappointed. I was so excited after returning from MD Anderson & it's all been shot down. The constant ups & downs of raising my expectations and creating hope and then being let down is exhausting.

On top of that... beginning Monday evening, I noticed my vision drastically getting worse, as well as having a large black floater in my eye. It's like a big black fly is covering the center of my vision. As my eye moves, it moves too. It's driving me crazy & giving me headaches. I left several messages for my eye Dr. and FINALLY spoke with him yesterday afternoon. I told him I felt like I needed to be seen before the weekend because of the significant change in my vision. I knew that there was something wrong. Today I saw the Dr. I no longer have central vision & can't even see the eye chart unless I move around. The best I could get with movement was 20/200. The Dr. immediately noticed a MAJOR change that, believe it or not, it is unrelated to any of my existing tumors. There is no swelling, bleeding or leakage of fluid. What I have is a problem with the vitreous gel that lines the back of your eye. It is tugging so hard in the central portion that the layer is pulling itself away from my retina and distorting the central vision. The macular hole is like a men's button-down shirt that is two sized too small, forming a hole between the buttons. In addition to that hole, the men's shirt is also being tugged outward. This tugging is the gel trying to pull itself away. So now, what shall I do? He will touch base with me this weekend and I will page him if anything changes in my vision. If there are any changes, I will see him before Tuesday. If this does not resolve spontaneously, then it will require surgery to have the vitreous gel manually removed. Otherwise, the macular hole will increase in size. Stay tuned...

Also since returning from Houston, I was lucky enough to get the flu! Fortunately I recovered and am hoping for a sunny and warm weekend. We will be attending Tyler's 8th Grade Play - Bye, Bye Birdie - where he is part of the backstage crew.

I received a wonderful surprise this week! A group of my sorority sisters went together and surprised me with one of Oprah's "favorite things". I am now the proud owner of a new Kindle! The first book I downloaded was Kindle for Dummies! It will be very useful for me this week because it has an audio option and I can listen to books out loud. The other perk is that the font can be enlarged, even larger than large-print books. I am so grateful for their thoughtfulness. When I can see again, I will send along some personal thank-yous.

Two Nuts in Houston

2009-04-17T14:33:00.000-05:00

This trip has been very therapeutic and has given me much hope!

Here are the highlights...
Surprise! First class to Houston for Kim. I got to not only experience what it's like to sit on the other side of the curtain, but also enjoy a full lunch service with free drinks to boot! The reason for this is that I flew on a buddy pass with my United flight attendant friend, Jeryl.

My Aunt Jan and Uncle Jim picked us up at the airport and surprised me with a mini family reunion at my cousin Amanda's house in Montgomery (about an hour north of Houston). We sat poolside and caught up on the last 5-10 years of each other's lives. I even got to feed carrots to her two horses. I met Amanda's daughter, Kiley (3) and my cousin Jennifer's daughter Lauren (16) and son Kayden (2 1/2). Even my cousin Sean (36) from Austin was there. We enjoyed the afternoon and topped it off with a wonderful steak dinner cooked by Amanda's husband, Jason. We finally arrived at our hotel around 10 p.m.

Our day began with a 6 a.m. wake-up call for a 6:30 appointment at MD Anderson. The hospital is an incredible cancer research facility. It consists of 15-20 buildings, connected by indoor walkways. You shuttle on golf carts from building to building for various appointments -- very cool!
The first doctor I saw was Dr. Dan Gombos, Associate Professor of Opthamology at MD Anderson. He was very knowledgeable on VHL and left me with several options of hope. 1) Direct or proton beam radiation (which, even if it works, will cause more vision loss), 2) Avastin (a drug given by IV injection into your eyeball - ouch! - which will increase the eye pressure & possibly the macular hole size), and the most promising-sounding is PDT (photodynamic therapy - direct laser following IV injections that that will cause the laser to only affect the tumors and not cause damage to the rest of the eye). Lastly is the Sutent chemo drug, which will not cause my eye to get worse, but may or may not help it get better. Some of the treatments he recommended were "shot down" by the doctors at NIH. Yet he felt they may be worth a try - who knows? Just because it hasn't worked on other VHL patients doesn't mean I would have the same outcome. I left a message for Dr. Meyerle at NIH to discuss her opinions and any research she had regarding treatment options. Luckily, most of my testing reports and discs were sufficient enough for the doctor. I only needed some pictures taken of the eye, an ultrasound to measure the lesions, and he recommended another scan to confirm the macular hole (which it did). This Dr. appointment was encouraging as he felt I would be a good candidate for the Sutent (chemo) trial.

Now it was 1 p.m. and we were off to see Dr. Eric Jonasch - he is the renal oncologist (kidney/VHL dr.). He also has a special interest in VHL - he considers it his baby. He wrote the Sutent protocol and found me to be a perfect candidate. To date, he has had 15 patients with VHL on the drug. Two had stopped taking it due to severe side effects. Two had increased growth of tumors and therefore went off chemo. The other eleven patients have had promising results. Three of them have had eye lesions - if they haven't shrunk, they have remained stable. He has even seen shrinkage of not only kidney tumors, but also pancreatic and kidney cysts. No one has ever bled on this drug & many have had brain or spinal lesions similar to mine. What a relief! I feel this drug holds a lot of promise for people with VHL. If not for the eye tumor getting smaller, it may have a positive effect on my other tumors/cysts. I am now going to research the options I have been given, as well as pros & cons, etc... Lots of homework!!! The soonest he could start me on the Sutent is mid-June, unless I cancel our cruise, because he would need to see me during that time. This is probably best anyway, because I don't want to be out of the country and on a cruise ship feeling sick.

All day we never had a break for breakfast or lunch, and only snacked on Cheese-its and candy. It's a good thing I travel with a bag of gum, skittles, sprees, etc. at all times! We became so slap-happy, that we were caught taking a picture with a blown-up hospital glove by an entourage of doctors. After returning from MD Anderson around 5 p.m., we changed into swimwear and went to sit at the Jacuzzi to discuss the day. What a different & positive feeling it was after having been rejected from the Sutent trial at NIH & knowing that these people have much more experience with the drug. Jeryl and I wanted to go out and celebrate & SURPRISE!, her cell phone rang. It was her sister-in-law, Lydia, who lives in downtown Houston. She wanted to take us out to celebrate Jeryl's birthday and my good news. A few hours later, we were dining at a French brasserie, Max & Julie's. It was a very delicious and upscale urban restaurant. Sorry, Nancy! You will have to join me next time.

We got up Thursday morning after sleeping in until 8 a.m. After sitting in the shade by the pool for about an hour and starting to write the blog, we were picked up at noon by our new cabdriver friend, Mike. He was so sweet. He heard that we ate a lot of snacks the day before and brought us a bag of mini Snickers for our ride home. We have to save his business card for future trips. We nicknamed him "Mike Candy" instead of Mike Cabbie.

Once again, it was first class on our return. Much thanks to all our friends and family that helped with our children while we were out of town and made this all happen.

What's next? First, I will do my research and check out my options. I will continue to see if there are any major institutions studying my type of eye problems. Perhaps there will be one in Hawaii or San Diego or some other tropical location. I could really get used to traveling first class on the buddy pass system. Thank you again, Jeryl, and Happy Birthday!

My Story

2009-04-06T17:51:00.000-05:00

I am presently a ripe young age of 47. This is my story “in a nutshell.”

Life was normal as a child until my Dad died. I was almost 7 years old. He died October 24, 1968, at the age of 30. My Dad died from what we now know as VHL. Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in some parts of the body which are particularly rich in blood vessels (please click on the sidebar link "What is VHL" to learn more). On autopsy, my Dad had multiple brain/brainstem tumors, spinal and kidney tumors, as well as being blind in one eye. The brain/brainstem tumor is what eventually caused his death following surgery.

I was diagnosed at age 13 with retinal lesions. I had many laser surgeries and many major surgeries on my left eye, with ultimate blindness in 1990. After many years of pain in the dead eye, it was eventually removed in 1992. Surprise for those of you who didn’t know! I now battle with retinal lesions on my good/seeing eye and also have a large optic nerve tumor. This is untreatable presently, as all methods have failed or caused worse vision, and the nerve is connected to your brainstem. Recently (2009), I was diagnosed with a macular hole, affecting the area of the eye that controls central vision. Unfortunately, I only see about one half of faces, have difficulty reading, telling time, etc…

My “terrible twos” came in my 20’s, at the age of 22, after dizziness, headaches and many falls. I had my first brain surgery. In and out for 48 days, I was eventually released from the hospital only to find there was another tumor directly behind it. The following summer, the “zipper” incision was reopened and this time I felt much better. What a way to spend my college summers! I still remember going out to the bars and my hairpiece falling in to a puddle or shifting on my head with a gust of wind. It was actually quite humorous.

My head was reopened two more times to remove a tumor from my left inner ear that had caused deafness and dizziness.

Over the years, I have had three partial nephrectomies (removal of the kidney) for renal cell cancer. Lastly, I tried a new technology where they burned the tumor. I have a total of one kidney left.

One lesson I’ve learned is you much be your own advocate. Another is not to always think that “no news is good news.” When my daughter, Alyssa, was six weeks old I had spinal cord surgery. Unfortunately, my neurosurgeon and internist failed to check my MRI scan and reports (each thinking the other had done so). Once they finally reviewed them weeks later, they wanted to do emergency surgery. What a scary, messy nightmare. I still have a lot of upper back pain, numbness and shouldn’t lift over 10 pounds – like that was easy with a new baby!

Lastly, I had brain stem radiation in October 2006 to treat a tumor connected to a 2-inch cyst in my cervical spine area. So far, so good – recent scans show that the tumors show no growth and are stable. I love that word “stable.” The down side is because the tumor hasn’t gotten smaller, I still deal with the symptoms of severe nausea, headaches and lightheadedness. My adrenal glands have stopped functioning because of the long-term use of steroids and now I take Prednisone to replace the cortisone your body naturally produces. Prior to discovering this problem, I was a “couch potato” for months and had difficultly focusing. Even a “venti” from Starbucks couldn’t get me moving!

So that about covers my life in a “large nutshell.”

Along my journey, I lost my mother in May 1999. She was the most wonderful, positive person. I don’t know what it must have been like to watch all four of your children suffer and go through many life-threatening surgeries. The only positive note of her death was she got to die before she had to watch her children die first. Ironically, she died from sporadic kidney cancer, found by trying to donate a kidney to my brother. This is probably why our kidney cancer is so prominent.

The medical bills were insurmountable and eventually our story went a bit public. Some of you may vaguely remember my family’s (Kolinsky/Willman) story being covered by Carol Marin on NBC Channel 5 news. She did a series of special interest stories and followed our family for many years during the late ‘90’s.

My sister, Lisa, passed away on September 9, 2001, from a complication related to her brain stem tumor and steroid use. My dear sister had just turned 37 years old as she lay in a coma. I’ll never forget how surreal it was writing her eulogy on 9/11/01. She had many friends/family at the service, but those out-of-state were unable to fly.

I have two brothers that are living with VHL. Steve is 48 and resides near Schaumburg. Jeff, 42, lives near Denver, CO. Both have lost their kidneys to VHL and have had kidney transplants over the last few years. Presently, they are otherwise stable. I also have a half-sister, Robin, 38 in PA. She is unaffected by VHL as she is from my mother’s 2nd marriage, but has cervical cancer to deal with instead. We are all there for each other, especially during a crisis, but otherwise we try not to make health issues our focus.

My goal for now is to seek out possible treatment for both my optic nerve tumor and macular hole. I’m always open to alternative medicine and am trying to focus on a healthier lifestyle.

I am blessed to have so many wonderful, giving friends. You’re all like angels on earth for me. I am also blessed with a great immediate and extended family. Most importantly, I have a wonderful, supportive husband, Steve. In addition to the normal stresses of life, he has the added stress of dealing with my situation. I am doubly blessed with two beautiful children – Tyler (13) and Alyssa (6).

I have no plans of checking out soon and have no time to pity myself. I have grown to appreciate life differently and try to enjoy each day as if it’s my last. I am a SURVIVOR.

It's all about us...

2009-04-03T16:37:00.000-05:00

Since I last touched base, we have all come down with the dreaded viral/flu/ear infection/sinus infection/pneumonia/bladder infection. You name it, we've had it at the Gillespie infirmary!

So now what's new with ME...
I am en route to M.D. Anderson in Houston on Tuesday, April 14th for the week to see their eye specialist and oncology team that follows VHL. Wish me luck. They have some new ideas and possibly a new drug trial coming up soon.

This past week, I had a new prosthetic eye made. It was well overdue, as it has been 10 years and you are supposed to get a new one made every 4-6 years. I will be picking it up on Tuesday, after it gets painted and fired. This week I also saw an ocular specialist who deals with visually impaired patients. She gave me some tips on how to deal with my central vision loss, including improving the lighting in my home and software for my computer (this will allow me to blow things up HUGE and even make my computer talk).

Spring Break has been very uneventful... Seems we were one of the few families who stayed in town. We were glad however, since we were all sick! My son, Tyler, is looking forward to taking a late "Spring Break" as he is traveling to Dallas for an international soccer tournament this next week. He is so excited to play the teams from Europe and exchange jerseys. They even have an opening and closing ceremony, just like the Olympics!

Hoping that you all had a lovely spring break & wishing you a blessed Easter. Hopefully, some of you will bring the sunshine back with you from your warm-weather travels!

Love, Kim

The latest...

2009-03-18T13:04:00.000-05:00

I apologize for the delay in this update. I have been patiently awaiting news, as well as further plans.

Upon returning from NIH, Dr. Meyerle (the eye Dr. at NIH) highly recommended that I do further laser treatment with my eye doc here - not to treat the optic nerve tumor, but to treat the peripheral retinal tumors. I did this on the Monday I returned (3/10). My local doctor was somewhat concerned because there was still bleeding and swelling. Still, he followed their recommendations, although he was worried I may have distorted vision again. So far, so good, due to the steroid pills and drops he gave me. My only concern is that I still see many floaters, as well as the previous blind spots - which once again is causing headaches, dizziness & nausea.

I have finally received most of my records from NIH & thankfully, my brain and spine are very stable at this time. My kidneys have increased tumor growth bilaterally, yet we will just continue to watch them until they grow larger. My pancreatic cysts have doubled in size in the past two years, which is probably an additional reason for my increased nausea. These cysts are benign & not dangerous unless they become solid. My tumors are ALL benign except for my issues with cystic changes in the kidney and pancreas, if and when they should become solid. Some tumors in my kidneys have become solid, but they are too small to do surgery at this time. My kidney function is already fair to poor, so I don't want to risk losing any more function by operating at this time.

My heart is normal! Yippee - there is one normal part of me : )

Another thing I have learned is that I was not rejected from the study due to my tumors (or changes in them). It was more due to the fact that it is not yet proven if this drug will even work on optic nerve lesions. They feel that it is more of a risk for me to take a toxic drug with all of my other issues when there may be no benefit. If, on the other hand, they find this drug to be beneficial, I will then be reconsidered for the trial. My search continues for other options. There may possibly be something opening at MD Anderson in Texas, but the Dr. I need to speak with is currently out of the country. Dr. Meyerle is hopefully going to contact this Dr. about my situation and keep me in the loop.

Everyone asks if there is anything I need. The only thing I need is for you to all keep praying that my vision will not decrease while I wait for a treatment...

I am looking forward to the nice spring weather! If nothing else, that should make us all feel a little better : ) I'm still continuing my nutrition kick. If any of you have any other alternative ideas, I am open for suggestions! My "life story" is now in progress and will be "published" on my blog soon.

Love, Kim

Still waiting for a YES

2009-03-11T19:36:00.000-05:00

Today my eye Dr. tried to contact the eye Dr. at NIH for a more in-depth reason for my denial for the clinical trial. He hopes to get more answers and find out how great a risk I really am for a brain hemorrhage {a percentage risk}. I'm also trying to find out if stem cell research will be of any use for my eye problems. I am still currently awaiting the progress notes from all the consults, as well as discs of my scans, so that I will have a better understanding as to why I was rejected. They should arrive Friday or Saturday. I am still finding myself very frustrated without the answers and have no contact numbers of the physicians who made the decision. As far as I am concerned, it is not a done deal yet until I speak with a neurosurgeon for a more detailed explanation. In the meantime, I have decided to focus on eating better and maybe trying some alternative therapies. Once I get more answers from NIH, I will begin looking at more clinical trials that may be available internationally. Stay tuned...

It isn't about me anymore... (e-mail from 3/10/09)

2009-03-11T15:55:00.000-05:00

the update . . . . Oh, where to begin . . . We did arrive back very late Friday night and werefeeling good about things. For those of you that don't have the background, thesigns were positive that I would be able to start the trial chemo drug thiscurrent week and there was great relief for having completed all the tests.On Monday, (yesterday,) I made a visit to my eye doctor for him to laser all thetumors in my right eye prior to starting the drug (this does not include theoptic nerve or macula, these are untouchables). The Doctors at NIH were theones that had suggested continuing the treatment he was doing as it was thecorrect treatment for these other eye tumors. After having the laser done and on my way home, the phone rang and it was NIH.It was not good news. After the doctors looked at my scans from Friday nightand all the doctors pow wowed, they determined that it was too much of a riskfor bleeding or a stroke due to my brain tumors. This was frustrating andshocking given the clearance that had been told to us while we were at NIH.We continue to brain storm and are trying to get more information about why Idid not make it into the trial. I have not given up 100% hope yet, but I thinkwe will know more details as some days go on. I plan to speak to the NIHneurosurgeon after receiving the MRI results.I believe things happen for a reason, so stay tuned for the next episode! Saysome prayers that research progresses rapidly. All My Best-Kim

It is STILL all about ME!!! (e-mail from 3/6/09)

2009-03-11T15:53:00.000-05:00

Hello to All From Bethesda (Yes, I am STILL HERE!!!!)

After a grueling week we have confirmed that I have some loose screws, oh you thought I was talking about my head . . . WRONG, they are in my foot! (oh, but I still have the hole in my head.)

Thursday was our big day to get out, we were hoping more than just out of the hospital, but a one hour doctor meeting turned into a day of tests and doctor visits which took eleven hours. The only thing left unchecked on my body are my teeth and tits. I was literally checked from head to toe and A LOT of places in between. The worst part was that they cancelled my MRI brain scans due to a probable loose screw in my recently repaired right foot. Due to medical/legal/security issues we had to put off the scans which I thought would mean an additional trip out east next week. We were able to escape the hotel after a fire drill from a guest cooking lemon chicken for dinner! We went and had a spectacular dinner at Mon Ami Gabi and did manage to enjoy ourselves for our big night out.

Today (which I still think is Friday) found us at Neurology for a neurosurgeon visit and neurology consult regarding the headaches. I received clearance as it appears my brain stem tumor and spinal cord remain stable. Still needed the additional MRIs to check rest of cerebelum and inner ear for possible tumor. After FEDEXing the foot scan the night before, we did receive the blessing from the foot doctor that MRIs are safe and will not effect the loose screws in my foot. We then were on our way to come home early when MRI decided that they would squeeze me in to avoid a further trip. That is good news, but the two scans left had to be at least six hours apart for some contrast to leave the inner ear. This brings me to the present time, as we write this waiting for the last MRI. The bad news is that the flights out of here are pretty scarce after 7:00. Our only option became a 10:15 flight back to the midwest.

Bottom line is that the clinical trial group is going to pow wow about the protocol for me to start the drug possibly next week. This assumes yesterdays bloodwork was normal and MRIs from today are good. If protocol allows, I may be able to avoid a trip out and start the drug at home.

Pray our flight is on time and smooth!

The Weary Travellers-

Kim and Nancy

It is all about me! (e-mail from 3/4/09)

2009-03-11T15:48:00.000-05:00

Hello Friends and Family!

After eleven hours straight of being poked and proded in the eye and other various parts of my body we made it back so the update may find me a little punchy!

The marathon started at the eye clinic and ended at the eye clinic. It was not good news as I learned that I have yet another issue which is a Macular Hole in the center of the eye. It shouldn't affect the study, but something that will need addressing. The way it is fixed is with an outpatient surgery which doesn't sound too bad, but the recovery will leave me in the dark with my head face down for at least seven days, oh what fun! Oh, and that would pretty much guarantee another surgery to repair the cataract which it will trigger. The optic nerve tumor is impressing all the doctors with its size, but all the doctors agree that there is no successful way to treat them. There has been a lot of scar tissue on the retina which most likely caused the hole. It is somthing that we will learn more about in the next few days, but likely they will want to watch how/if it progresses in the next few months.

Met with a team of doctors and came to the conclusion that they don't want us to go to DC tomorrow and have fun, they think it would be more fun to have more tests, Yipee! It became obvious that I would not be able to start the drug this week because all the test results would not be complete. The doctors still have many questions before they will approve me for the study. Say your prayers that we get more answers instead of more questions so they can determine if this is right for me.

Not sure exactly what tomorrow will bring other than more tests. We are still managing to laugh through all the frustrations since there really isn't anything else to do. Our goal tomorrow is to try and eat somewhere other than the hospital.

Love to All-

Kim