This week has been a whirlwind. Quite the doozy of a Crohn's adventure, not to mention in learning more medical vocabulary. I just spent another 5 days at Beth Israel, and I haven't even blogged about the last damn visit. I'll start with last month's, and give a little detail about my first Remicade infusion as an out-patient process. Ish will get real. Hold on tight.
Last month, I relapsed. I thought I was getting better and my magic meds were working. They weren't. I relapsed and almost died. 84 lbs. isn't much to weigh, and it's absolutely NO fun receiving vitamins through IV, let alone hear your doctors talk about Total Parental Nutrition [or TPN], a process in which your food is tube-fed to you. In cases when this is necessary though, all systems go. A girl's gotta eat, right?? But making that decision is scary, and can be dangerous.
I was lucky enough to have been able to attempt** finding remission without TPN, despite the severity of my colitis. With Remicade. I had been running from this drug for almost two years when I finally made the decision to treat my disease in a much more aggressive way than I did in the past. Infusions scare me. I hate needles. Side effects of this drug are terrifying. There's a 1 in 10,000 chance of Lymphoma.
I had no choice but to suck it up and make my decision. Dr Flier stood at my bedside in the Stoneman building, a place I know well, with a belly full of baby and a look on her face that made me want to sob. She was going on maternity leave in a matter of days, and she and I both knew that I would be starting this new adventure without her. We tried it my way and that didn't work. The next step is to brave the darkness and make a new effort. It was this, or lose my colon. My Godparents were in my hospital room for the discussion, and my Godmother [who had undergone chemo and continues to be one of the most amazing woman I have ever known] rubbed my back as we asked a number of questions regarding treatment, side effects, and my chance for living what would feel like a normal life. I cried the whole time, but after years of wondering if that would even be possible, I have to admit that sitting in a comfy chair or bed every few weeks while an IV gives me what may keep my serious pain away- didn't seem like such a terrible thing, in comparison. I agreed to start the infusions, and we made it a reality two days later, on February 29th.
I was still in my hospital bed, IV chilly from earlier saline, magnesium, potassium, and iron infusions. My nurse was incredible, and made me feel comfortable as the the IV began to drip what may prove to free me from the hell I'd been living for so long. Steven sat holding my hand, and I gripped my stuffed elephant Emma as we watched and waited. And you know what? It didn't hurt. It didn't didn't do anything that I was scared of. I had no reaction, other than a sleepiness that couldn't be shaken. Now that I think back on that, endorphin fluctuation may have played a serious part in my zonking out. I stayed at Beth Israel for a few more days, as staff watched my weight, and food intake. I left weighing 87 lbs., and honestly, I felt great.
On the drive home, as the snow fluttered, everything felt like slow motion. My mind was racing. Every possibility, every hope that I had for my life came rushing back in a flood of emotion. 'I'll be strong.', I thought. 'I'll waste nothing.'
It's absolutely inexplicable, the loss you feel with a disease like mine. I wake up after a flare, and years of my life are gone, months at a time. And I feel it, that's the worst part. I watch it happening, as friends fade from sight. I am Wesley in The Princess Bride, watching years of my life being burned from my body, as I'm strapped to some torture device. You hate your job, right? Everybody does sometimes. But, you have a job. You can get up and walk to your car in the morning and drive there, whether or not you feel as appreciative of it as I would, right?
Appreciate that.
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Just before my first Remicade Infusion in BI's Pheresis Unit.
After I was discharged, I had to wait a little longer than usual to have my second Remicade infusion. Usually, you start out every week, then every 2 weeks, then 4, 6, and finally, every 8 weeks. I was waiting for insurance to cover what I needed. If you're not signed up for the right program, Remicade can be very costly. Do your research and apply for help.
This next part is crazy. Something that I never knew I'd feel. I went in for my second infusion at Beth Israel's Pheresis unit. I walked into a long room with windows on both sides, full of nurses and rows of beds. There were a lot of large machines. Some I had seen before, some I wondered about. I felt a combination of guilt and solace. I was walking into a room where people were receiving chemotherapy. I felt like an intruder. Like my disease paled in comparison to what some of the souls lying in the beds around me had endured. And I cried. I cried for my aunt, who had breast cancer and died. I cried for my Godmother, who had breast cancer and lived. I cried for great friends who have lost parts of their guts to the disease that we live with. And I cried for being such a weak, weepy baby. I sat in my small, curtained room at the end of the hall, Steven opened his computer to work as I received what I needed, and we started treatment. An IV was inserted, and I tried to make myself comfortable. I was about an hour into the infusion when I started feeling differently. My lower back throbbed painfully, and I had very serious chills. Nurses came to my side, and stopped the drip. I was having a reaction. Great. This was what I had been terrified of. I was then given Benedryl through my IV, and we waited. Then I developed a fever. It got as high as 102 degrees before I took some Tylenol to help break it. Low grade fevers are common with Crohn's Disease, but when they start to climb, it can be a serious cause for concern [I have a thermometer close to me at all times in my home]. We waited again, and after about two more hours, we started the Remicade again. My back started hurting a bit once more, but we continued. I fell asleep and woke up to the beeping of the IV machine, alerting us to the empty Remicade bag. I had done it. It was a shitty ordeal, and it lasted 7 hours instead of the usual 2, but it was over. Knowing that I had to come back soon didn't even bother me- I just wanted to get the hell out of there.
I survived. It wasn't the most comfy day, but I've had much worse with my Crohn's, and I think that if the worst that Remicade will sling at me for now are a few back aches, I'll stick with it as we decide if long term use is right. My Crohn's symptoms seem less intense, and I'm gaining the weight back that I desperately needed. I'm waiting to break 100 lbs. and I am finding more and more energy to do the things that I missed for such a long time.
Don't be afraid to take chances. Don't be stubborn. Listen to your doctor sometimes... and while I don't- and would never- encourage anyone to abandon their beliefs, I am a little more humble in knowing that opening my mind to alternatives to alternative treatment may have saved my life this go 'round. Do I plan on being on this medication forever? No. Would I recommend it to anyone else yet? No. I am going in for only my third infusion this week. I am saying, that at this moment, Remicade was the right choice for me. Don't stop researching. Don't stop wondering if new things can help. Don't stop smiling, and most importantly, don't you dare take anything for granted.
Be brave. You're a lion. Your body is yours.
I am so glad that I may be getting mine back.
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