Three weeks ago I announced how pleased I was that fellow multiple myeloma patient, Tom from Ohio, had graciously granted me unfettered access to follow his allogeneic (donor) transplant journey and share it with my readers. Miss the first three posts of the series? Here are the links:
Tom has already faced several obstacles. I’ll let him explain in his own words:
It has been an eventful last week or so. I was supposed to have started Chemo last Thursday, and radiation and transplant should have all been completed by today. Well, as you have figured out by my use of “supposed to” and “should have,” none of that happened.
My week last week started with a drive to Cleveland hours after a blizzard. I called Monday morning and told them I would not be coming in because the roads including I 80 were not plowed. The answer: get here or the transplant will be delayed. OK, a new sheriff in town, so I risked life and limb and showed up for my meeting.
Finished the meetings monday which consisted of a simulation of the radiation. They stood me up on a wooden rack that adjusted for support. As I stood there they manipulated arms and levers to fit me. The locations were noted so when the actual radiation sessions begin they can just set it up and get to business.
I also had a consult with a pharmacist and a meeting with the transplant doc. The pharmacist asked me to bring every med I am on, not a list, the actual meds. She went through each one checking to see if there will be any interactions. Turns out other than stopping Revlimid for the first 100 days, all my meds are ok. The consult with the doc was just another chance for me to ask any questions and to sign a release. (my gut says the release is really why I had to drive in the blizzard)
Wednesday was another drive to Cleveland and was supposed to be the beginning of my 100 days away from home. I tried to not make my departure too dramatic so the kids would be ok. I had been prepping them that they will get to visit dad and visit the cousins, who coincidentally live near Cleveland. Some tears were shed but for the most part they handled it like troopers and off my wife and I went.
The drive to Cleveland is a little over two hours, so we left early for our 8:30 meeting. As I was pulling into the clinic my cell rang and my transplant nurse informed me that a culture they took on Monday came back positive for Rhino Virus (I’m told this is the common cold virus) and as a result my transplant will be delayed one week. Since I was already there and they could not get me on the schedule later for a hickman line they went ahead and had me under the knife for a Hickman placement. That went fine; I was under twilight sedation. The whole thing probably took less than a half hour.
After the Hickman catheter was placed, I met with the transplant nurse and she instructed me and two of my caregivers on how to care for the line, since I will now have to have the thing in for a week before they use it. During that meeting I was hit with another unexpected twist. Apparently, stem cell donations are not typically allowed to be frozen. They are donated and infused within a day and are never frozen. As a result, my delay causes the donor to change their schedule and if the donor can not or does not want to wait then I’m out of luck. The nurse was back and forth on the phone with the organization facilitating the transplant while I waited. Turned out the facility where the cells were being donated was not going to be open on the day it needed to be under the new timeline. A decision was made to allow the cells to be frozen, which I am told is very unusual. I asked the nurse why the big deal about freezing the cells? She told me that not allowing cells to be frozen guarantees they will be used and avoids getting cells to someone who ultimately does not use them, thus depriving someone else of getting the cells. ( I found that very interesting, but guess it makes sense) I think this is also why they had me put the Hickman in knowing there was a delay. I think it was easier to make the case to freeze the cells if the recipient has tubes hanging out of his chest.
The delay ended up being good. I did in fact get a little cold on Thursday and dealt with it until Saturday. I spent Sunday, Monday and today once again getting ready to be gone. What is interesting is last week when I left, I felt like I had everything covered. Turns out I wasn’t as ready as I thought. I spent the last couple days getting my taxes ready for the CPA; this activity is painful without being nauseous with GVHD, so I’m glad I got that done. I had another chance to review wills and trust and double check the financial aspects of all of this. I spoke with my neighbors so they knew what was going on, in the hopes they will keep an eye on things. I also was able to spend a little time with some good friends of mine. Last week was about making my wife and kids comfortable and saying good bye. And this week I was able to go out twice with buddies, so that was nice.
I think my nurse was waiting for me to freak out when she told me about the delay. She hasn’t worked with me much so she doesn’t know me that well. I reserve my freak outs for bad service, disorganization, or incompetence. Luckily I have experience very little of any of these things at the clinic over the last five years. They have always been top notch and their “Patient First” slogan really does reflect how they treat me. So when I was told about the delay I took it in stride and moved on. We MMers know the key to this is patience and flexibility. I’m sure there will be more hick ups as this goes on but as long as I roll with the punches it will be fine. My caregivers are working on developing this attitude but they will eventually get it.
Today is Tuesday, On Thursday I will be going to Cleveland for chemo, Thursday Friday and Saturday. I will get full body irradiation Monday and Tuesday with the cells being infused on Tuesday. I’m feeling good and the virus seems to have been shaken. I anticipate by this time next week I will be the proud owner of some new cells.
Your Florida trip (1st annual Myeloma Beach Party) sounds wonderful. I would be there in a heartbeat if it didn’t fall in my “lock down” period. When I get through this I’m going to take the kids to Disney and you and I are going to have some sort of foo foo umbrella drink; first one on me!
“Hiccups” like these in Tom’s transplant preparation aren’t uncommon. I understand how frustrating delays getting started can be! My auto launch was pushed back three or four times. The takeaway message for transplant patients is to always expect the unexpected. It’s difficult to remain calm while staying resolute and prepared. Hopefully reading stories like Tom’s will help.
Feel good and keep smiling! Pat