One of the scariest things about this bone marrow transplant (BMT) was not knowing what it would be like. You can read and research, you can ask and you can even get some answers. But it’s not the same as it is when you are right in the moment. I was lucky enough to be paired with a BMT survivor through BMT InfoNet. Jim is about Steven’s age and went through a transplant 10 years ago. We spoke on the phone and he answered all my questions. And I felt better.
Through no fault of Jim’s though, I find that as we go through the process, many of his answers were a little blurry. And then it hit me…this is like having a baby. All mothers will tell you the birthing process is uncomfortable, but worth every minute of it. But if you’ve ever been near a preggo ready to squirt one out, reality is about the moaning, yelling, cursing and sweating. It makes you wonder how they can tell you that childbirth is the most beautiful thing in the world. What happens is that mothers are immediately fogged over as soon as the baby is placed in Mom’s arms. In other words, the they can tell you what they think it was like, but their reality has been already colored by the joy of the event and what they remember is very blurry! The joy of a second chance at good health and a happy life is the same!
So as a public service, and because I’m such a giver, I’m going to try to document this as we go. I’ll tell you what really happens, how it looks and how Steven tells me he feels for the next couple of months. Hopefully this will help the next patient standing at the BMT doorway wondering what’s on the other side.
Lets do a quick pre-quel, as they do in the movie business. This time Steven’s cancer came back and he had 4 rounds Rituxan & bendamustine chemo that seemed like it worked after the first two rounds, and then showed that it didn’t work after the scan following the second two. So it was time to talk BMT. He then had 2 rounds of RICE.
RICE sucks. It works, but it sucks. I’m not trying to scare you but the RICE was a lot harder on him than the R+CHOPS. Although for us, his cancer was progressing pretty aggressively before we got to the first round, so that could have had something to do with the side effects. Quite frankly, the second round of RICE went a whole lot easier because the cancer was knocked out after round 1! But the oncology way always seems to be “one more for good measure”. Originally we talked about 4 rounds of RICE…but it worked so well that we were thrilled to skate by with 2 rounds. The PET scan after that second round showed no cancer in his body…finally!
So that brings us to our last trip up here to Shands. It was really just an in-depth evaluation. But know that when I say “in-depth” I mean I was happy to get out without a colonoscopy! We were busy almost every minute of all three days. Nurses drew blood every morning. A quicky, right-in-the-exam-room bone marrow biopsy came next. They needed to test his bone marrow just to make sure there were no funky cells, that his bone marrow was normal and that he still had some and it hadn’t turned into Play Doh after all the chemicals that have been pumped through him in the last 10 years! I was surprised that they just gave him a happy pill, a few dentist type shots near the site and boo-ya, we’re going in!
We ended the day with a 3 hour talky-talky visit with a case worker. Gale couldn’t have been nicer, and it turned out she was a 15 year BMT survivor, so it was a blessing to meet her. But we talked about EVERYTHING. Family, friends, work, home, pets. vacations, money, religion, marriage(s), mental health and every sidebar you can think of that would pertain to any of those topics. She took notes, and by the time I realized this was all going in a report, it was too late to stop wise cracking! Luckily, she laughed at all the stupid stuff I said, but she did tip me off to the afternoon appointment for day 2. A real shrink. She didn’t say I should shut my pie hole, but I got the message!
Day 2 started with more blood & pee tests (for him…not me) and then came the really SCARY part. Cue the creepy music because we were about to meet the Finance Coordinator! This time block on our agenda put fear in my veins for the entire week preceding the appointment, but it was surprisingly comforting when it came around. Carolyn had already researched our insurance, explained to us why it was so crappy and told us not to worry about anything. She went over a bunch of forms and filled in every blank in order to get us all the benefits she could possibly squeeze out of every avenue. It was surprisingly comforting to feel like we had a new person on our financial team of 1 (me). I have recently learned that some hospital billing people, like Stink Eye, can be heartless. But there are caring, helpful coordinators in every facility. And if you are having a problem with yours, ask to speak to someone else. Ask for a manager. Ask them to cut it out. You can work through all the billing crap, but you have to ask. It’s rare that it starts off the way it has at Shands, but I’ll take it. We deserve the break!
Our next appointment was more like a class than a meeting. We met a research nurse whose purpose was to educate us on the entire process, go over ALL the forms Steven would be signing with the doctor on the following day and to make sure we understood everything. It took over an hour and I was thankful there wasn’t a pop quiz. But we did get homework. We were given copies of all the forms that Steven would be signing, and told to look them over and call her if we found anything that needed further explanation. She gave us a short lunch break so we made a bee line to the hospital cafe for some eats!
After lunch we met with the BMT coordinator Carey who went over the scheduling ins and outs with explanations of why all the ins and outs were in place with humor and ease. It really is easier to follow rules when you understand why. And then we finished up with a tour of the BMT wing, we saw a room and bath, the futon where I could sleep, where the refrigerated snacks and drinks are located, met nurses, yukked it up and got one more warning…and then we were off to see the shrink.
Steven was taken back ALONE, and I was relieved at first…and then worried the more I thought about it. We were told not to joke around, and that was usually pointed at me. But now that Steven thinks he’s funny by osmosis, I kept cringing at what might be happening. But after 45 minutes, she returned him to me and took me back for a quick chat. She really just wanted us to understand what we were getting into, how this was going to affect our lives and most importantly to make sure we were both up for the challenge. She asked a few questions based on things Steven discussed and we were done. Apparently we passed!
The third day was another full battery of tests for Steven. More blood and pee, chest X-ray, ECHO / EKG, a pulmonary test and probably more stuff that we didn’t even realize were being tested. We had a break before we met with our doctor and were able to squeeze in a mandatory visit to The American Cancer Society Hope Lodge. Carey, our BMT coordinator hooked us up with this amazing opportunity. The ACS has a few of these facilities across the US in various towns. It is a godsend housing opportunity where the ACS puts patients and their caregivers up, FOR FREE, while undergoing cancer treatment. Again, lots of rules. But definitely a gift! If you need to get treatment outside of your normal commuting area, check out the HOPE LODGE opportunity. We were accepted as guest/patient and are staying here now. This location is about 2 blocks from the hospital. It’s walkable for a regular person. For a chemo patient without a car, there is a van that will take you to your appointments. And there is a feeling of camaraderie because in every couple, there’s one bald partner…if you know what I mean. Not for nuthin’ but the Hope Garden doesn’t suck either…if you’re in to that peace and tranquility Zen thing!
The last part of the evaluation process was meeting with our newest oncologist. Dr. Norkin went over all the test results, told us that a few more would take time to get back, but it looked like we were right on track to move forward. Steven signed the official documents giving everybody permission to do everything necessary to keep him alive, and we headed home.
After a week off to organize life at home, we checked in to Hope Lodge yesterday after Steve ‘s 8 AM injection at Shands. Steven is getting Neupogen shots and will continue to get them at 8 AM and 6 PM every day for a total of 8 days. During the last 4 days of the series, Steven will be going through apheresis to collect stem cells for his autologous stem cell transplant (which is the same thing as a bone marrow transplant).
I’ll fill you in as we go through it…and now you’re up to speed. Except for today. We arrived at Shands waaaaaaay before the butt crack of dawn today. He was taken into the outpatient surgery unit and as soon as we walked through the doors and I smelled that hospital sanitized OR adjacent smell, I started getting woozy. I hate this part. Steven, on the other hand, was totally enthralled with a new piece of information that he learned today. Being a teaching hospital, Shands has been awesome with cutting age technology and procedures. We have a phone app for Steven’s interactions with All Things Shands. The app updates continually with test results, appointments, drug lists and any other thing we might want at our fingertips. The hospital and lab equipment seem to be the latest and the greatest, but the thing that Steven was most impressed with…the newest toy that he now wants for Christmas…and an appliance that is sure to become the punch line to many a joke is:
And that is exactly what you see. There is a hole in the hospital gown that connects to the hose and warm air is blown, literally, up you dress…or if you turn over, up your ass! And as soon as it was hooked up, Steven decided this was a little slice of heaven on earth and couldn’t have cared less about what was going to happen next, as long as they didn’t take his hot air machine away! So I was escorted out of the holding room, and Steven and his hot air machine took a little ride into “twilight”, the anesthesia of the out-patient. I got a cup of coffee, started working on this blog post and before I knew it, the doctor was out in the waiting room telling me that they were done, Steven was great and that he was already coming back to the real world.
By 9:30 am he was awake finished and the proud owner of a new tri-fusion port. It’s the Mother of Chemo ports and he’d be the king of the keg party if he had the energy for that type of thing. This is the magic portal into his new life…makes it seem not so yucky looking, doesn’t it? BTW – the hang-y things stay. He’s now got a three-legged octopus hanging off his tittallery region! Suddenly nipple piercing seems wimpy!
If you would like to help me take more time away from work and have more time home caring for Tumor Boy writing about our adventures with Cancer, we’d be so very grateful if you’d visit our Go Fund Me Page. Our insurance has a lot of loopholes for things that aren’t covered, and my job has no loopholes for being able to work from home! And I’m gonna do whatever I have to do to keep my husband around. After all, I just got him house broken!
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