So the next journey begins. Since I knew we were going to be there for a while, my room had to feel cozy and somewhat like home. We decorated it with pictures, Hawaiian leis, artistic dolls along with stuffed animals, and angels that looked over me 24/7. I was in the hospital for a total of 35 days. If you remember with my last blog, Failure Is Not An Option, my transplant was set for 7/31/14 which is considered my new birthday. Also, that the first 100 days after the transplant are the most crucial. At around Day 14 my Dr. was extremely excited when he saw that my counts were steadily rising and once I started en-grafting, he was just beside himself with excitement.
This is where it gets a little fuzzy for me. You see, for some people fighting a life-threatening illness, they want to know everything about their disease, what they are fighting, what their chances are…and ultimately, are they going to make it? Not this girl. I’ve seriously never even Googled my disease.
|This is how I roll. Burying my head in the sand.
“Everything I Read is The Truth, Right?!”
Scott’s the opposite. He’s read thousands of pages, several books and all sorts of crazy gobbledeyguck research papers. When the doctor gets technical or tries to explain things or tell me a prognosis I refer him to Scott and they step outside to talk. And Scott knows better than to talk too much about that stuff and I get to live in my blissfully ignorant cocoon.
But when the doctor said I was engrafting, and he was basically dancing with excitement, I saw Scott get excited too. And last week he explained to me what that really meant. I guess back in January I had what they call a poor prognosis…which means the odds were against me. And after chemo, when my cancer came back, it was looking pretty grim. But by some miracle they got it into remission a second time with a crazy drug called Ponatinib that may have saved my life, but almost just about killed me during the process.
The rollercoaster continued with the crazy ups and downs. I didn’t find an adult bone marrow donor out of 25 million people. Even more scary. Then, another small miracle, they found several cord blood donations in storage that were a perfect match. Mother’s, donate your cord blood! Those stem cells save lives. And then the last big hurdle, would my body accept the transplant? Apparently, crossing that hurdle made it so that, for the first time since January, I had a positive prognosis. The odds are finally in my favor. I think because Scott knew all this stuff, he was way more excited about the news than I was. I was pretty drugged up too, but I think I saw his eyes all watery for the 1st time in front of me since this mess got started.
I’m now day 33, already 30% of the way there to the first big recovery milestone!
Now that I’m home and out of the hospital, that means we don’t have a 24/7 nursing team to make sure i get everything when I’m supposed to get it. Now we are alone and are in charge of taking my medications correctly on a daily basis. This is the most nervous I have seen my mother/caregiver throughout this whole process. I have a total of 13 pills I must take, some of those multiple times a day. In all, I take 28 pills per day. 28 pills. And this doesn’t include the “as needed” pills that help with pain and nausea. So it’s probably closer to 35-40 PILLS!! Pre-Leukemia Michele took 1 prenatal a day and that was it. This is certainly something to get used to. And I love the fact that all of these pills cause side effects; headaches, diarrhea, constipation, dizziness, skin rashes, swollen feet, muscle and joint pain, blurred vision, extreme exhaustion, vomiting, nausea, and others which are not so fun. Normally you might experience one or two side effects with medication. But because I’m on so many pills, I experience all of these. Maybe not every day. They like to take turns.
Oh, this is a fun one. I also have hallucinations which I think are attributed to the strong pain medication they had me on while I was in the hospital. One day I saw a floating meatball in front of my face. And, with my eyes closed, I would keep trying to bite into it. Mysterious Meatball – 1 Michele Mann – 0.
How Are You Feeling?
I can’t tell you how many times a day I hear this. Now I realize this is pretty much the only thing one can ask a sick person. Or maybe it’s the fact that people just want the best for you and want to think that everything is going great with each passing day. They don’t want to think of the alternative. The truth is, I never know how to answer it and I hate doing so. It’s such a loaded question. How’s this, “Well, today was a success because I only took a 4 hour nap in the middle of the day and I didn’t vomit.” Or “Not so well. I could barely make it down my stairs due to my swollen feet. Didn’t have an appetite therefore getting food down was a huge challenge. And what I do get down goes right through me. I could go on, but I’ll spare you.” See…who wants to hear that??
The DIRTY Truth of How I’m Feeling
I feel terrible. Some days I feel less terrible and some days I feel more terrible. But for right now, that is the answer. And here is how we handle it. We take it one day at a time. It’s hard. My immune system is still extremely weak and I’m being monitored closely. Hence my 3 days per week doctor’s visits until day 100. I am banned from going anywhere except for my house and the doctors and I can only have 2 visitors at a time. My symptoms, as I’ve already mentioned, are rough and they break me down every day. But I’ve come this far. So all I can do is my best. Like before, there are good days and there are bad days. For instance, my husband caught me in a good moment when I was listening to Rihanna so I gave him a little dance. He was so thrilled, of course he had to video it and put it online for all of FB to see. So these are the moments we live for now. Anything that puts a smile on our faces.
So what am I saying about all this “How are you feeling” stuff? Maybe try something like, “Is there anything I can do to brighten your day?” (Or just do it.) I’m certainly not saying I’m not thankful for the fact that people care enough to want to know how I’m doing. I’m just saying maybe we could do it in a different way. Let’s figure it out together because I’m still learning as I go along as well. And right now, all I know is that I don’t like rehashing how I’m feeling 10+ times a day. And I don’t want to lie like so many of us when asked a question like this. “Oh I’m fine, just hangin’ in there.” Or “Good, good. How are you doing?”
Bye Bye Hair…Again
|Well…at least I won’t have to do this for a while!
(Photo credit goes to Steve Stonebraker and his team. Please
note this IS a photo shopped picture.)
Before the transplant, I had chemo and radiation. I happened to notice my hair wasn’t growing back as quickly as last time. So I asked my Dr. about it recently. Come to find out, it was a VERY strong dose of chemo and radiation. It’s going to take 5-6 months for my hair to grow back. Nooooooo!!!! I was hoping for my hair to be repairing itself while in recovery mode as a prisoner in my house. Also, this time it made my hair fall out much worst. For instance, I have about 6 eyebrow hairs left on each brow. And my lashes are non-existent. Jokingly, I said to my husband that I looked like a Conehead.
Animal Lovers Beware – Cue the Sarah Mclachlan music from those commercials…
During one of my doctor’s visits while in the hospital, my beautiful Lucy came up in conversation, and my Doctor looked at me with wide eyes. The next words were just surreal. “You have to get rid of her. For at least a year. But she can’t live with you.” Really?! Everything that’s happened this year and now my cat is being taken from me?! I’ve had her for 10 years, she’s an inside cat, and we treat her like a princess with her litter and the type of food she gets. Unfortunately, she can carry bacteria or parasites that can be deadly to someone whose body can’t fight back.
I did everything I could to not cry in that moment but there have been many breakdowns since then, especially with me being home and not having her around doing her crazy little kitty rituals. She brought such joy to my family and being apart from her just doesn’t feel right. Good news is that we found a nice temporary home for her. One of Scott’s team leaders on Highforge stepped up and said that him and his fiancee would take her for the year. I trust them and feel she is in good hands. Plus, I get visitation. I just have to have on a hazmat suit. (Ok, that’s an exaggeration. But it will be a gown, gloves, and mask.)
Camp Mann = Huge Success
This blog has been very REAL and as most of you know at this point, I live on laughter. So I can’t leave you hanging or thinking “why do I follow this blog?” Instead I leave you with an awesome video from Camp Mann that took place on 7/27/14. Thank you to everyone involved with this event! The turn out was amazing and people truly had a great and entertaining time. Unfortunately I was not there but I was lucky enough to receive several videos that Digital Brew did. Here is my personal fave. The first time I watched this was in the hospital while eating soup. Needless to say I cried. Not just any cry. But the ugly cry with me trying to talk with soup pouring back out of my mouth. I was so moved. Everyone made me feel so special and all I’m doing is just trying to be the best version of myself. I can’t say it enough – THANK YOU!