Boo! I hope this post finds you all getting into a bone-chilling mood for Halloween.
Regarding my eye, after 10-15 appointments over the past three months, I feel like I've been through a whirlwind of ups and downs. First and foremost, the worst problem is that I had found a new chemo eye injection that I was willing to try, so I went to see a retinal specialist at UofC for his opinion, and when he looked into my eye, he said "Oh my gosh, your eye has changed dramatically in the past nine months." He said my tumor is much larger and has partially detached my retina and lifted it up so that it no longer lays flat. Normally, a detached retina requires emergency surgery to repair as it works best to save vision when done quickly. Yet, due to the large size of my tumor and it pushing my retina up, I am not even a surgical candidate unless my tumor will shrink. His feeling on the chemo drug Eylea is that it would not shrink the tumor due to its size, but had I tried this when it was smaller nine months ago, I might have had better results. When I asked him what he would do if it were him, he told me to pray. I said no, really, seriously, and he said again, "I would pray. I'm going to contact several experts in the area but I really don't know if there is anything more we can do for you."
I am very disappointed because I knew my vision had been changing rapidly, and every time I questioned my usual doctor, Dr. Cohen, he stated everything looked the same and he never told me of the growth. Nothing I can do now; hindsight is 20/20.
One of the experts that the retinal specialist contacted at the University of Illinois, Dr. Mieler, I have now seen three times. He has not used the Eylea chemo on me as it is $1,800 per injection and not covered by my insurance for my diagnosis. Instead, he is using a similar chemo, which he injected into my eye. Now, I will wait four weeks and have a re-injection done on Nov. 30, and follow it with a laser treatment in hopes that it will start to shrink the tumor. He said he can't promise anything, but as long as I'm willing to try and since I have no vision to speak of, I have nothing to lose.
There is going to be a study at NIH that requires monthly trips to their facility for phase 1 trial treatments. I'm waiting for Dr. Chu to call me with more details and to decide whether or not I'm a candidate for this trial.
During this whole process, my glaucoma has gone absolutely out of control. A normal level is 8-15. A low level means your eye is soft and a high level means your eyeball is hard and can rupture. My numbers have been as low as 4 and as high as 61. 61 is one of the highest readings the doctor has ever seen and he thought I would require surgery in order to stabilize my pressure. Thankfully, we found the right cocktail of eye drops and pills and my pressure has been ranging between 18-30 lately. I am having this monitored every 1-2 weeks.
Regarding my kidney, I finally was able to get an MRI and ultrasound of my kidneys done in early August. As I was unable to receive contrast, my doctor met with a team of radiologists and a specialist and they feel that there has been little or no change in the last six months. However, I do have a change in my kidney function, which is causing them to focus on me more closely. My blood pressure has been extremely high, so they have me recording it three times per day, and the function per blood work continues to decrease. I feel I am more swollen in my hands, joints, and face as I retain more fluid due to this problem. I will have a follow-up MRI in January.
My most bothersome problem since July has been my skin and the pain associated with it. My skin had been for several years very thin and would rip like an elderly person's. This summer, many people began to notice a change in the color and leather-like appearance of my skin on my arm. I saw my dermatologist regarding this in mid-August and he, along with two other nephrologists, feels that this may now be a condition called "NSF" (nephrogenic systemic fibrosis). What does this mean? This is a condition that is very rare that is caused by receiving contrast for an MRI scan with poor kidney function. The toxins injected to help view in the MRI get trapped in the cells and cannot get out through your kidneys. Basically, you start to develop fibrin and collagen growths that are visible externally, yet they also internally damage your liver, heart, lungs, and cause them to become very sickened. My brother Steve had this condition and it caused him severe pain in his joints. When he died, he had heart issues and lung problems that they felt were related to this condition. On his autopsy, they determined that this was a significant cause of his death.
Some of the symptoms of NSF are blood clots of no apparent cause (I've had two), incredible itching or burning of the skin, bone pain especially in hips and arms, leather-like appearance of skin, and eventual restriction of movement of joints. This condition can rapidly progress or take years to progress. Whatever I had started in July on my arms and has now moved to my feet, ankles, calves, thighs, hands, back, and chest area. Thankfully, it does not go to your face. I am still waiting for a full diagnosis. I have seen two dermatologists, my internist, and the first of two rheumatologists. There is no blood test to diagnose this and there are only 400+ reported cases in the registry at Yale. If I do not have this condition, I'd like to know what I have. It's making me crazy.
Again today I returned to see my local dermatologist, who decided to take four further biopsies as he felt since August there has been a dramatic change in the appearance and spread of the skin condition. He encouraged me to see a rhumatologist ASAP to rule out any form of Lupus, as he said Lupus has a lot of similar symptoms as the NSF. Lupus is an autoimmune disorder where your body attacks itself, usually following an acute infection or illness. It definitely includes achiness, joint pain, swelling of hands, ankles and wrists, fatigue, fever of unknown origin, and skin rash that varies in appearance. This can be treated with steroids and topical medications, whereas NSF has no treatment other than a kidney transplant. Lupus can be diagnosed through a series of blood tests while NSF is diagnosed by ruling out everything else. If it's not Lupus, they think it might be NSF. Hopefully we're getting closer to an answer. Dr. Lahti prescribed me a few new cocktails to take for anti-itching because I felt I was going to lose my mind from that.
I still use my cane to navigate mostly through my home and at some local stores, yet I require much more training in this area. I have gotten lost walking from my front yard to my back yard with the cane. When in an open area, it is hard to tell where you are, and I nearly walked into a road once but was stopped by a tree branch in the face. It is very scary to know how easily I can get lost. It takes a lot of focus and concentration and counting of steps so I know about how far I am away from my starting point.
Regarding the mysteriously box from the State, I finally received it the first week in October and, sadly enough, it contained a machine that is no longer useful to me as my vision has changed so significantly for the worse. Thankfully, I am expecting a delivery in the next several weeks of a machine that will take a picture of any printed material I put underneath it and then it will have a Siri-like voice read it to me. I can't wait to get it. I'm so excited.
So what does my next month hold? More trips to the eye doctor, skin doctor, and round two of repairing my prolapse. I'm scheduled on Nov. 22 for a hysterectomy at Lutheran General Hospital with a one-night hospital stay. Hopefully this time there won't be a problem.
On the bright side, my daughter Alyssa turns 11 tomorrow, although in her mind she's already a teenager. We're postponing her birthday party as she's had a rough couple of months. She broke her right arm six weeks ago rollerblading and broke her left arm nine days ago playing soccer. At least she kicked that winning goal before she went down. She's been a good sport. Whoever thought there would be such a selection of colors to choose from -- she's had a bright orange cast and now a pale blue cast. Otherwise, her school year is going well. She doesn't miss a beat with her Girl Scouts, tap dancing, and travel soccer. Alyssa had a lot of problems with me being blind and we've had lots of conversations and many tears have been shed, but the outcome I feel was a good one. She broke down and told me she never really meant to hurt my feelings and how much she loves me, and how she's going to try so hard to help me do things. Since then, she started making me coffee that she brings to my bed on the weekends and sometimes even before school. My tears of sadness turned to tears of joy when I realized she really does love me.
Things have been quieter around the house. Even though my children are seven years apart, there was always laughing or bickering going on at all times. Tyler has been off to college since mid-August at UW-Whitewater with his major remaining undecided. He loves school and has been studying hard, and as of mid-terms he had 2 As and 3 Bs. I'm starting to think that brain surgery really did something good for him. Ha ha. He plans to come home this weekend as he wants to surprise his sister and take her to Great America (not looking so good as of now due to our unfortunate weather forecast being cloudy and a high of mid-40s; they may need to pick a different outing). We attended the parent weekend at his school as a family several weekends ago and really enjoyed our day. Alyssa hung out with the dance team and got to perform at the football game halftime with the pom pom team. We went to half of a soccer game as well, and then to the local pub to eat. We offered to hang at the dorm but the boys didn't seem to want anything to do with that. We were quite surprised they actually vacuumed that morning, but nobody wanted to take out the garbage. How hard can it be to throw a bag down the chute? Hopefully Tyler will grow up a lot this year. I know he is already doing his laundry but that's only because he's run out of his clothes twice. He plays on an intramural soccer team and practices with the club. He plans to try out next year for the team. This year they only took two freshman so next year he'll have a better chance. I'm just glad he's happy. He appears so, which makes me a very happy mom.
Steve's been traveling a bit more with business and trade shows. He still manages to get Alyssa to her soccer games and practices, pay the bills, and keep up on the house. We're trying to work together to be more aware of the stress we each feel, because he is under constant stress to do it all for the family and doesn't get a break, and he feels responsible financially. He just feels like he has to keep it all together. I only have to be responsible for me, even though my life is bad. I rely on other people for things I need to do. So, we're trying to be more thoughtful and show more appreciation to each other and offer a word of thanks more often. It all sounds so easy on paper.
My family was here this past Sunday and they thought Steve appeared to be trying really hard to be a kinder person. He picked up our food and was much more outgoing and everything. They came to celebrate Alyssa's birthday and to help me out for the day, although there was little time. The good part was, by them coming here to my home, I think they realized by looking around the house how much help I could use. They saw paperwork that needs to get filed and I showed them my closet and how I have begun to organize it, and everyone again committed to wanting to come out and help again. My Aunt Winnie brought homemade food for our upcoming weekend with Tyler and Debbie brought me a bottle of holy water from the Vatican blessed by the new Pope. However, I accidentally drank a third of it thinking it was just a water bottle. Nooo! Now I'm blessed inside and out, I guess. She also got me a glass jar of water for health, which came from the holy land where sightings of the Virgin Mary took place, I think.
Besides all my medical fiascoes, I always manage to find time for fun. I went out with college friends including DiTy, Missy, Lori, Mindy, Carrie, Nancy, Darlene, Mary Jo, my Brookhaven neighbors, the two Sheilas and Sandy, and several others. I even arranged for a long weekend in Ann Arbor, MI. Suzanne was thoughtful enough to offer up her time for a whole weekend to attend the VHL conference, and when we weren't doing conference stuff we were out having fun. It was nice to meet some new people there as well as learn a lot of new information and treatment changes in the many affected areas of my disease. It seems everything I've done has changed now.
I have recently connected with a small group of visually impaired-to-blind women. It has been nice to have someone to talk to that can relate to what I've been going through. In addition, I joined a support group for disabled people in our area, yet most of these people have spinal cord injury or stroke paralysis. I have also met three other visually impaired people through the Center for Independent Living and have found it very helpful to talk with them.
As you well know, my biggest life saver has been Suzanne with her driving me to and from all my doctor appointments, etc., etc. I swear she's like an angel. Some days I even refer to her as Dr. Baumruk as she researches everything following my appointments. Who could ask for a better friend? She's even learning how to navigate the iPhone and iPad for the visually impaired for me. We truly spend a lot of time together. I wish we had more time to spend doing fun things instead of always going to a doctor.
Much thanks to my friend Sheila in Atlanta who spends many hours on the phone typing and editing my blog, and you know I have the gift of gab so it takes a lot of tweaking. I truly am lucky to be blessed by so many good friends.
This Friday I'm off to another fiasco for happy hour and Thai food with three blind women and a dog, which is so funny because we can't see each other or the menu. Cheers!
