Today is the first day of spring, although it almost feels like April Fools' Day because the weather is so abnormally cold. Most of you will be heading out of town shortly for your spring break trips, hopefully somewhere warm. The Gillespies will be staying in cool, chilly, crappy Chicago.
Instead of giving you a two-month rundown by week, I'll give you a head-to-toe update. Neurologically, nothing has changed and all seems a-okay, although I am due for some MRI scans of my brain and spine next month. I did meet with the new ENT physician at U of C who, interestingly enough, recommended a procedure to help me with my hearing. It entails a screw drilled into the bone behind my ear on the non-hearing (left) side, which when healed and a cover is applied to it, will transfer sound by bone conduction from the non-hearing side to the hearing side. It's a two-hour surgery, non-bloody and outpatient, which doesn't sound that bad. My biggest fear is how it will affect my MRI scans in the future because metal alters the magnetics of the MRI. So, I have to research this a bit more before giving it a thumbs-up.
As for my eyes, I continue to have good and bad days. I wish I could figure out what causes my vision to become so dramatically clear one day yet so dark and completely blurry the next. This past weekend, I went to a dance show. Sitting in the 8th row, I was able to see the dancers on the stage in full costume and in color. I'm not sure if it was due to the contrast with the lighting, but I could see like I could six months ago. I've also been to the movie theater and was able to see the movie and only needed some narration during the silent times. And I could read my email one day. But, just as fast as I have it, it is gone. The doctor's theory is that it has more to do with the changing shape of my eye, either throughout the day or due to the changing pressure. My normal pressure should be under 15-20, and mine lately had been in the 30s. Yet, now that I'm more managed on glaucoma drops, I got my pressure down to a 13. I'm now being followed by a glaucoma specialist as well.
In my last blog I mentioned some downsides of getting the gamma knife to the brain stem. Another is that it affects your saliva and teeth. The combination of the gamma knife and steroids that I've been on causes tooth cavities and breakage. So I recently broke a tooth, had a wisdom tooth pulled, and a crown placed on another tooth.
I am back to my regular steroid dose again as of last week and I'm hoping that this means my extra 15-20 pounds that I gained in fluids will start to shed. I only have two pair of "fat pants" so I'm wearing the same two pair all the time. I have vowed not to put on a swimming suit until my weight is down. It's all in my waist but my legs are normal, so it looks kind of funny.
My biggest dilemma, besides that one, is what to do with my kidney disease. I've got two doctors giving me almost completely opposite plans of care, yet they studied together, so when I get my next set of MRI scans, I need to decide about getting another opinion. Dan Dalton, the kidney doctor at Northwestern Memorial, recommends no further resection of the kidney cancer, but instead removal and a live donor kidney transplant. Unfortunately, he doesn't think I'd survive dialysis and he's also not sure I could live through the transplant procedure. So I'm leaning more with the doctors at U of C who feel that they are still able to surgically remove more bad areas of my kidney and avoid transplant completely for at least a few years. In the meantime, I need to look for a live donor who is O-Positive. I spoke with the kidney transplant center at NW Memorial, and I was told that I could not do a direct live donor transplant since I have kidney cancer. You need to be cancer-free for one year, meaning I'd have to have it resected and be on dialysis for a year prior to getting this kidney. I also found out that you have five times the chance of dying under dialysis. But on the plus side, transplants are not as bad anymore with the anti-rejection drugs being less toxic, so you're not as sick, and in some cases you don't even need the drugs.
The good old prolapse issue will be handled in early May. Once I am off Coumadin for my blood clot, which should be sometime at the end of April, I'll wait a couple weeks before having the urogynecology surgery. As for the blood clot, I'm wearing the support compression sock on my left leg and I get my clotting level checked weekly. I'll have an ultrasound to check if the clot is breaking up or getting smaller or larger on April 3. At that time they'll check my right leg to see if any clots have developed there. After seeing two hematologists and giving 50++ tubes of blood, they have still not been able to figure out the cause of the blood clots. I developed one in June and one in November, but they may never figure out why. It's kind of scary.
My final, largest organ is my skin. I saw the dermatologist several times in the last month for some scabbed over areas that have just never healed. I had eight biopsies done, and four of them came back as basil or squamous cell; two came back as a changing into a suspicious, pre-cancerous state; and the other two areas were scar tissue. Tomorrow I'm scheduled to have the first of two Mohs surgeries to remove two of the cancers, and two weeks later I'll have the other two areas removed. The suspicious areas they will freeze.
I went to a new internist Monday, so I can switch all my care over to the U of C and have somebody from every specialty there. The new doctor is Dr. Jain. On the good side, he's young (about 40) but on the downside he's never had a VHL patient. He was very helpful and has already initiated efforts for me to receive help in the home through my Medicare. He feels I should get it through Medicare as I am housebound and disabled enough to require help. This is through a different department than the Dept. of Rehab, which denied me any assistance from the State. Today a nurse came to get my baseline medical history and drew blood, and Friday I have a social worker coming to evaluate me for occupational therapy and a home health aide for at least three days a week. This aide, if approved, would be able to do housekeeping, laundry, serve meals - basic household chores. They won't drive me anywhere, though. The social worker needs to check to see if we can get my neighbor Suzanne on the plan so that she can start to receive benefits through my insurance company, because she drives me to every doctor appointment and she does so much more for me, whether local or two hours away. Sometimes it's an eight-hour day and she should be compensated, because she has been a blessing and she is a wonderful, thoughtful person who I couldn't do without.
I am now able to read my email and follow Facebook through my iPad. Suzanne's son Jack set it up so that it talks to me. It's awesome. I also got a Netflix account through a friend so now I can watch movies for free. What Jack will do next is set up my iPad so that I'll be able to talk to it like Siri, but it'll take a couple days to install and set up the program. So hopefully one day soon you'll see me sending you something on Facebook or email again.
I've also been reading books on tape and I saw two of the authors this week. Jodi Picoult had a sold-out book signing at Libertyville High School and I went with my college sorority sister Jeryl. We both brought a book to be signed and had a photo taken with her. Last night I went out with my neighborhood book club friends and saw Jan Lancaster, who is so funny and I thought I'd die laughing. Everybody bought a book and had it signed except for me because she had nothing on audio. I plan to get her next book when it is available on audio and have her sign it, because she lives locally in Lake Forest.
Tyler returned to soccer this past month and has actually played a few games. After realizing how much he missed it over the past six months, he decided he really wants to try out for the college team at U of W Whitewater. He recently contacted the coach and is going to attend a camp this weekend with the team. Unfortunately it'll be like 26 degrees outside. Otherwise he is right on target for college and we just now need to hope and pray that we receive some financial assistance, as you all know how expensive school is. On a medical note, Tyler is due to repeat his brain MRI and possibly had more testing of his other VHL-prone areas sometime before he leaves for college. So far everything is clear. He needs to see the eye doctor again, too.
Alyssa needs to get her blood drawn for the VHL marker to see if she has the same genetic makeup as me (hopefully not), which can be obtained at U of C free of charge. She still stays busy with all her Girl Scouts, jazz and tap dancing, basketball, choir, and soccer. In addition, she finds free time to play on the computer making videos or playing with her American Girl dolls.
Steve has finally completed year-one with his new company. He's been very busy and still likes his job even though sales have been a bit slow the past few months. He still finds his life very stressful and has started exercising to help cope with that.
As for plans for spring break, we're planning to go bowling, see a movie, see a play (Alice in Wonderland), and maybe do some arts and crafts. Tyler is very excited as he is going to Wisconsin Dells with his best friend Landon and his family for three days. Hopefully we'll be able to take a family trip together before Tyler leaves for college. NOT Disney World. Somewhere totally different.
I look forward to hearing how all your vacations went. Give me a call when you get back from your spring break and hopefully we'll be able to go out for lunch and actually sit outside someday soon. Only two more months left of school. I can't believe it. May your travels be safe and sunny.
