At the end of February I went to Northwestern Memorial to see who I thought was my neurosurgeon, Dr. Bendok, in person. I had not seen him in more than a year and a half, although over this time my internist, Dr. Havey, had been making sure I was obtaining MRIs of my brain and spine every six months and sending all MRI scan reports to Dr. Bendok's office. When Steve and I walked into the office, the first question he had for me was, "What does your neurosurgeon think of the scans and changes you've had in the last year and a half?" Steve and I both looked at each other and said, "What doctor?" Dr. Bendok thought I was seeing a doctor at MD Anderson. We told him we were understanding that he had been my doctor since Dec. 2009, when I had returned from MD Anderson with complications and he became my physician through the ER, since one of his partners, Dr. Chandler, had told me he would not follow me with complications.
Luckily, there have been minimal changes in my brain tumor and some growth in two spinal cord tumors, and as I am asymptomatic, Dr. Bendok did not recommend doing any treatments or surgery. Before leaving his office, we confirmed that he would be taking care of me from this point forward.
Of biggest concern is herniation in my cervical spine. It is herniated from the top of my neck to my upper back. Basically, it's like the bones are pushing down and all of the soft areas that normally protect the nerves are squished out, and what I feel is pain in my left upper arm and deep bone pain in my right arm to my elbow, as well as numbness down to my fingers on the right side. So after wondering these past two years if I had a dormant infection or metastasis, had this doctor actually looked at these reports prior to this appointment, I would have had this answer long ago. Instead, this problem has only just worsened.
Regarding treatment, he said I may require cervical fusion, which would entail putting in rods and a bone graft to stabilize my upper spine, yet it may only prevent this pain from worsening. He mentioned steroid injections also. He did not want to do either of these two options at this time due to my history of infection with the last surgery. As for now, I go to the Rehab Institute of Chicago for traction and physical therapy twice a week. Things seem to be getting a little better, yet I don't think the pain will ever completely go away.
Other than seeing the neurosurgeon, I've had two precancerous skin treatments on my arms and chest with blue lights, which appears to work well with squamous and basil cell cancers.
Also, I've had two steroid injections in my right foot for a painful area where my bones are rubbing together, and eventually it will require surgery to have scar tissue removed.
Since January 15, I have been paying all medical expenses out of pocket because Cobra had not kicked in, but I received a call this past week with the best news I've had all year: the state finally decided to approve me for Medicare (woo hoo!) and not make me wait for enrollment in July. This week I hope to see if they can retroactively submit all my medical bills from Feb. 1st for coverage under Medicare.
So there is one prayer answered. We shall find out soon if another prayer is answered, as Steve has had a final interview with a company last Thursday and should know something early this week.
I saw my low-vision eye specialist and placed my order yesterday at Costco for new magnifier glasses. My vision has worsened, yet the best they can offer is just magnification and better lighting.
I received a phone call several weeks ago that my aunt (my real dad's sister) went into liver failure and was not doing well. She didn't suffer long and recently passed away. Upon going to her services, I reconnected with a lot of family from my father's side, most of whom I have not seen or spoken with for many years. Sadly, it took a funeral to reconnect us and we are now planning a happier family reunion in about a year. At the service, I sat next to my 70-year-old aunt who has recently been diagnosed with VHL. Her doctors (the same as mine) said she is probably the oldest person ever to have been diagnosed with VHL. She never went to the doctor and was asymptomatic until recently.
Steve and Tyler have had quite a busy spring break week seeing colleges. They went to Western Michigan, Northern Illinois University, and National Louis University. The latter is really small. Tyler already decided he needs at least a mid-sized college that has a good sports program. He has not chosen his field of choice yet but would like to play soccer if possible. Today he is at Northern playing with their soccer team.
Alyssa and I have been very busy as well. We have mostly done things locally. We went downtown to Chicago one day, taking the train to the city and cabbing over to American Girl and Navy Pier. The store provided us with a personal shopper for two hours due to my vision. They were so nice. It was like the royal treatment. Then we saw Mirror Mirror, the movie, and Alyssa has had many play dates. I've seen Hunger Games and October Baby, too. For me it was a good week because I love movies and I was able to get out and do something I enjoy.
Although the week was fun, I'm exhausted and looking forward to the return of school tomorrow.
St. Patrick's Day was a very special day for me as it marked the close of a very thoughtful fundraiser set up by Diane and Jim Lipuma. My life has truly been touched by the most amazing, giving, thoughtful, sensitive friends as well as strangers who have heard my story/blog. Even though some have never met me or my family, they have made donations to help alleviate my medical bills. It's hard to put into words how that gesture of giving makes you feel, even though I feel like I have done nothing out of the ordinary myself. I believe anyone who was in my circumstances would rise up and live the same lifestyle I do.
I have learned from this experience and have passed on and given forward to others as well as told many others of the GiveForward program. Specifically, I would like to thank everyone who donated, large or small, and all of you who have passed along my story, as well as the two families who donated $500 as matching donors. Both were made anonymously, yet I know they were both friends of Diane and Jim. One of them posted the comment, "God Bless You." Every donation was greatly appreciated. The comments were so touching and have inspired me.
The total contribution brought in a phenomenal amount of slightly over $10,000, which I just received yesterday. Tomorrow I'm opening a special account to keep this money in as the money is going to be used for medical costs. Recently I ordered two pair of glasses. Thank you Shelly for the frames at your cost. In addition, I'm going to upgrade my phone to an iPhone 4G so that I can talk to Siri and have her do things for me. I'm so excited. I might need an Apple class but it's got to be easier than how I do it now. I also really need to get some better lighting throughout my house, like under-counter and brighter lights.
For now, life is looking better and the days are looking brighter. I'm looking forward to spring and spending Easter with my relatives, who I have not seen in months. Hopefully you've all had a wonderful spring break and are returning home safely. I think we only have about 40 more school days left until we're back in the swing of summer. I'd better get my project list in order. Hoping the weather returns back to our 70-degree weather soon.
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