Surviving The Worst Year of My Life (Part II)
enBloom brings you another First Person Feature. Vanessa M., a talented realtor, doll enthusiast and blogger shared her poignant story of diagnosis with a catastrophic illness and her subsequent fight to convene a team of physicians and a treatment plan consistent with her values. To say Vanessa is engaged, empowered, equipped, and enabled is an understatement. We are so glad she gave us permission to share her story once again (the original post was at her blog, Van’s Doll Treasures) right here.
First Person. A couple weeks later my friend, now my new Primary Doc, called to say one of my tests indicated that I might have water around my heart. If so my heart was in jeopardy of stopping. Uh oh. Back I went to get an Echo gram. Turns out my heart was only functioning at 30% and I was diagnosed with Chronic Heart Failure. I was admitted back into the hospital July 1st, 2010. My heart failure was a direct result of how hard my heart was working to pump the little bit of blood that I had in my system. I told them they had 3 days to fix the problem because that is the longest I can stay in the hospital. Day 3 they had me fixed enough to go home. I left with more meds. I had yet to start the Revlimid, but the wheels were in motion to get it approved by my insurance company. At $10,000 a month for 21 pills, I wasn’t at all sure that they would say yes. But my oncologist assured me that if they didn’t approve it, he would find someone to pay for it.
The heart meds kept me groggy. On July 7th, the day before my 42nd birthday, I got up in the middle of the night to go get water. I felt a little strange but decided to proceed. At the top of the stairs I went to take a step and fainted. Luckily there were only about 8 steps, but the concrete tile at the bottom did not cushion my fall. I quickly awoke, but I had knocked out my front tooth crown and seriously damaged my other front tooth and the one next to it. Facial trauma, that’s what they called it. I remembered smiling on the inside, because all of this was getting to be pretty comical to me. What’s next, I remember thinking. Turns out I needed major dental work to the tune of about $2000. Apparently my dental insurance wasn’t all I expected it to be. One of my front teeth needed to be pulled out and I would need to get bridge work. Once again, I didn’t have the money. And in the dental world, there is no such thing as “bill me”. They were able to put my crown back on temporarily, but they wanted me to get the infected tooth pulled immediately. The thought of walking around without a front tooth while I tried to raise $2000, was not appealing to me at all. It could take me months or even a year to come up with that amount of extra money. I decided to keep my tooth in for the time being. It was so loose, I felt like I could literally push it out with my tongue. It was practically hanging out of my mouth. An amazing thing did happen though. Over the next few months the tooth sort of went back into place and tightened up.
Back to the cancer and the heart failure. The heart meds took away my appetite. I lost 35 lbs in about 6 weeks. My new problem, keeping on weight. I had always longed for 0 body fat, and I had just that. This would have been fine if I had needed to lose weight, but prior to getting sick, I had worked hard to get to my ideal weight, which was what I had put on my driver’s license 10 years ago. And we all know that when I put it on my driver’s license I wasn’t there yet. So now to me I was 35 lbs underweight. I dropped to a size 2 from a size 8. So as you can imagine I was looking pretty hideous with my tooth hanging out my mouth and my new skeletal frame.
I have been through a lot. I haven’t even scratched the surface. There were nightsweats; nose bleeds; itching so bad I couldn’t put water on my skin; headsores, eyebrow sores, panic attacks, etc. Oh yeah, I almost forgot to mention two months after my diagnosis, I was carjacked at gunpoint. Through it all, I kept smiling. People around me couldn’t believe how happy I seemed to be. There were days when my smile and positive attitude pulled me through.
I have not had to go back to the hospital. I was able to come off of most of my heart meds. I’ve been on Revlimid for the past 5 months, with little to no side effects, and great results. My blood count did drop back down to 4.5 two months after my blood transfusion, but I was functioning at such a high level, the oncologist didn’t admit me. Apparently my body had adjusted to my low blood count. I am happy to say that my current blood count is 9.2, thanks to the Revlimid killing off all those bad cells. I am not in remission, but I am hopeful that I will be one of the 70%ers soon. I can now walk and run, and my goal is to be back on the racquetball court within a couple of weeks. I’ve gained 16 of the 35lbs I lost and holding steady.
Guess what I got for Christmas? My two front teeth. A miracle showed up three weeks ago. It was a settlement check from a class action suit with Eastman Kodak, my former employer for 12 years. My dental work ended up costing more because I had to get two teeth taken out and a larger bridge, but my settlement check was just enough to cover all the work.
The day I got diagnosed was the day I really started living. There was almost a sense of relief. I didn’t have to focus on having enough money to retire at 65 or 67. I no longer had to worry about having good credit. I could actually live each day to the fullest. I was a work-a-holic before I was diagnosed. I am still a work-a-holic, but I’m more focused on the things that matter to me.
When I started putting my Living Trust/Will together, I realized something else. I have a lot of stuff. None of which I have any great attachment to except my dolls. Who would I leave my doll collection to? I have yet to come up with an answer to that question. I have spent over 20 years collecting dolls and doll stuff that I like. A good deal of which is still in boxes. I now had to question this tactic. I realized 10 years ago that I would never sell my dolls. So the thought of someone, or the state getting my dolls was kind of depressing. So needless to say I have deboxed a few more dolls over the past couple of months. I imagine more will be deboxed and enjoyed in 2011. It no longer makes sense to me to spend money on things I love and not really enjoy them. It might still make sense if I had 20 more years, but I can’t count on that.
A Patient’s Evaluation of the Health Care System
I would be remiss if I didn’t mention how criminal our Health Insurance system is. Those people are high class criminals and belong in jail. After being diagnosed, my insurance company dropped me, stating that I must have known something about this cancer and that I must have lied on my application. Well they had to keep me because the doctors told them there was no way I would have known. They are on another campaign to get rid of me as a client. They have literally changed the terms of my insurance mid stream. It is very scary that my life is in the hands of the insurance company. This country is not designed to help the really sick. You are almost left to your own devices.
In conclusion, as unrealistic as the above events may seem, they happened just as described. I couldn’t make that up if I tried. I had no intention on making it such a long story, but each piece seemed important. From day 1, I followed my instincts at every turn.
- Declining chemo injections may have saved my life.
- Firing those first two oncologists and my primary doctor, may have saved my life. (All doctors are not created equal. If you don’t have a good feeling about someone, get rid of them.)
- I also took control of my treatment.
- I was willing to ask questions. (If I didn’t like the answer, I asked more questions.)