HARVESTING AND PLANTING SEEDS OF HOPE THIS FALL
Since November 8, 2019, Dan has had a multitude of medical tests, treatments and procedures including MRIs of his abdomen, spine and heart, radiation treatments, CT scans, multiple x-rays of his spine and chest, a custom “turtle shell” back brace, oral chemotherapy, injectable chemotherapy, mega doses of steroids, bone marrow biopsies and more vials of blood drawn than he can even count.
But that was NOTHING compared to what’s involved in getting a Stem Cell Transplant (SCT). First they test you to make sure you are not only physically healthy enough to withstand the transplant. They also need to make sure that you are emotionally prepared as well. It’s not a walk in the park. It’s hard on your body and on your emotional health. Not everyone is a candidate for it, but thankfully Dan is.
This is an example of what was involved in just FOUR days of the pre-pre-transplant preparation:
- Calendar Review & Consent Form Consultation
- Frailty Assessment
- Consultation with the Transplant Team
- Tour the Apheresis Center (more on that in a minute)
- Central Venous Catheter Line Care Class (more on this too)
- Full Body Pet Scan
- Chest X-Ray
- Labs #2
- Bone marrow biopsy #2
- Consultation with the Transplant Team #2
- Meet with Transplant Coordinator
- Central Venous Catheter Line Consultation
- Meet with Social Worker (more on that too)
- Pharmacy consultation
- Pulmonary function test
- Cardiology consultation
- Meeting with Oncologist
- Consultation with Transplant Team #3
The entire team of the University of Minnesota Masonic Center Center and the Blood & Marrow Transplant team have been incredible. Not just professional, efficient and smart, but they are kind, caring, concerned with every single detail. They have patience with our many questions, are quick to respond to phone calls or emails, and just generally a blessing to both of us.
The care they give isn’t just for the physical aspects of multiple myeloma (MM), while talking to the Transplant Coordinator and the Social Worker, they have both Dan and I participate in a questionnaire about how we are feeling about everything -- the treatment, the outcome, the time commitment, the financial aspects, everything.
They provide a huge book of resources for both patient and caregiver regarding support groups, financial assistance, “what to expect” scenarios, contact information, dietary suggestions, home remedies for side effects and more. They ask if we want religious or spiritual guidance or assistance while at the hospital and beyond. Believe it or not, they even include a section about *sex*. Trust me…there’s been a WHOLE lot of sex talk with these doctors since Dan’s diagnosis. (More on that later too!)
For someone like me who can never get ENOUGH information, all these resources and data is a Godsend.
Once Dan got the approval for the SCT and after the quarantine for the positive COVID-19 test, the actual pre-transplant process began.
BEFORE THE TRANSPLANT: TUBES IN & OUT
The pre-transplant involved a series of injections of Filgrastim (G-CSF) which helps to stimulate the growth of neutrophils, a type of white blood cell (WBC) which is important in the body’s fight against infection. In this instance it is used to stimulate blood cell production so Dan’s WBCs can be removed from his body prior to the transplant.
Starting on Friday, September 4 and going through Labor Day, Dan went in every morning to receive a shot of G-CSF. Possible side effects included cough, muscle pain, diarrhea, headache and bone pain. On the first day, he had a little bone achiness, but that was the extent of the side effects.
Once he completed the shots on Tuesday, September 8, he was fitted with a central venous catheter (CVC) line. A CVC is a thin, flexible tube that carries fluids and medicines into the body through a vein.
The CVC tube is implanted in the chest wall and tunnels under the skin to a large vein near the heart. Dan has two lines in his CVC. One for things that go in and the other for things that come out. This CVC may stay in up to two months, depending on how recovery goes.
Dan was heavily sedated with Propofol for the procedure which involved making a small incision near his neck, which has been glued together. The CVC is stitched into place and held in place with bandages. It’s an odd looking thing that needs a lot of attention including daily cleanings/line flushing, dressing changes and changing the end cap. I just got back from a class to learn how to do all of this today. It’s a lot of steps, but easy enough.
Other than some tenderness and bruising, Dan hasn’t had any issues with the CVC including while sleeping or showering. He is not allowed to get it wet and we were given “emergency clamps” in case the CVC breaks or leaks. I’m sure it will be less scary once we get used to it.
BEFORE THE TRANSPLANT: HARVEST TIME
With the CVC installed, Dan was ready for the last step of the pre-transplant preparation: the harvesting of stem cells. Otherwise known as Apheresis. This is where they actually remove the stem cells from Dan’s bloodstream. He laid in a bed where blood was removed from one side of the CVC, mixed with medicine to prevent clotting, spun in a machine which separated parts of the blood. This allows them to collect the needed stem cells. The rest of the blood flowed back through the other side of the CVC.
However, before this whole process could start, another step was needed. Lab tests showed that Dan had double the number of white blood cells he needed to begin the Apheresis. But the cells weren’t releasing into his bloodstream fast enough. His number needed to be at 10 milliliters to begin the harvesting but was only at a 2. Fear not! They have drugs for that, so after the CVC was placed, he needed to get a shot of Mozobil, a bone marrow stimulant. Sure, no problem we say. I ask the doctor about potential side effects. She laughed a little.
“Well…about 50% of people get EXPLOSIVE DIARRHEA”. Ummm…what? She said, “No really. I mean EXPLOSIVE. Like get home as fast as you can”. They even offered him Depends or a disposable sheet. By this point, I am practically on the floor laughing. Dan finds poop stuff far less funny than I do. He turned down the Depends. (And I’m still laughing)
In case you’re curious, he did NOT have explosive diarrhea. No diarrhea at all, in fact. But the Mozobil did its job.
By the next day, he went from 2 milliliters to 27 milliliters and the harvesting of the stem cells began.
The process of the harvesting was pretty easy. After watching the blood spin through the machine, it was all rather boring for him. He had to lay in a bed for about five hours last Wednesday and Thursday and they were able to get almost everything they needed. So he only had to go back for shorter visit on Friday. Other than a sore back from the uncomfortable hospital bed and some fatigue and headaches, the process went pretty smoothly for him.
The stem cells are now frozen and awaiting transplant.
THE TRANSPLANT: A PLAY IN THREE ACTS
As of today, we are still waiting to find out when the actual transplant will begin. We went in to the hospital today for the CVC Line Care Class and so Dan could get his FOURTH Covid test. He had to have an additional test before the CVC was placed and this final test before the transplant begins. Once we get the results, we are anticipating that the transplant will begin later this week.
Dan is having an AUTOLOGOUS HEMATOPOIETIC STEM CELL TRANSPLANT. This means that the stem cells are his own as opposed to coming from a donor. The actual transplant is broken into three parts:
1.) Pre-Transplant Chemotherapy. This will take place the first day he is in the hospital. It will be a one-hour mega-dose infusion of Melphalan (chemotherapy) via the CVC line. This is called “pre-transplant conditioning” and is used to clear the bone marrow to give the stored stem cells room to grow after transplant.
This is point where Dan will most likely experience the more “traditional” chemotherapy side effects such as nausea, vomiting, mouth sores, hair loss, fever, etc. Thankfully, he will only have one dose of this with side effects expected to start Days 3-7 after the infusion. According to his oncologist, Dan will feel at “rock bottom” between Days 7-10 and then slowly start to feel better every day after that.
2.) Stem Cell Infusion. This is the actual transplant. On transplant day in the hospital, Dan’s stored stem cells are thawed and given to him in a manner similar to a blood transfusion via the CVC line.
3.) Post-Transplant Blood Count Recovery and Follow-Up. He will start to receive the G-CSF shots again to help speed up the recovery of his blood count. Barring any complications, he will be in the hospital for approximately three days for step 1 and 2. From there, he will go back and forth to the hospital every day for at least a couple of weeks for follow ups, labs, etc.
POST TRANSPLANT: ANOTHER QUARANTINE
The first 30 days after the transplant are the most critical. He will essentially have NO immune system, so neither of us will go anywhere (other than to the hospital) for at least 30 days and up to 100 days.
Once the transplant is done, I’ll write more about the various restrictions, updates, etc. In fact, I expect to make daily blog entries with any updates, random thoughts, and funny stories just as an outlet.
This was a long ass post. Lots of moving parts, updates and information that is just easier to explain when I can write it down and share it.
Overall, we are both doing well. Dan has had a really good attitude throughout this whole thing. He’s remained positive, optimistic and hopeful. As it gets closer to the transplant date, he is a bit more anxious and had a rough day emotionally this past Saturday.
He’s been through a lot. Dealing with all of this during a pandemic makes it more challenging in one way, but makes it easier in other ways. Cancer is not for the faint of heart and although it was hard to see him struggling this weekend, I’m glad he allows himself to feel the feelings. I think he tries to be “brave” for me and while I do get a lot of my strength from his attitude, I don’t want him to hide what he’s feeling. It’s healthier to let it out.
I’m scared. Not that he won’t survive the transplant or the 100 days following. I just don’t want him to suffer in any way. Especially if I can’t help him. I asked him if he was upset about possibly losing his hair. He laughed and said no. As much as I love him, I did tell him that I will NOT be shaving my head in solidarity, but I MIGHT think about shaving my legs. Thankfully he laughed.
OPEN CALL TO SUPPORTING CAST MEMBERS
I’m going to try my hardest to keep making him laugh and keep his spirits up. This is where I need your help. During that 30-100 days, drop him a text, email, Facebook message or give him a call. If he doesn’t feel up to talking, he won’t answer, but leave a message.
Since Dan’s initial diagnosis, I have told people that I believe we have done so well with everything because of your support, love, prayers, check-ins, texts and good wishes. In the first few weeks after we let everyone know what was going on, I swear we could FEEL the support surrounding us.
We need that again. If you’re the praying type, please pray. Send good vibes, healing thoughts, positive juju, anything that you believe helps -- not just for him and all of us who love him, but for Dan’s entire medical team. They are truly angels on earth and we couldn’t have done any of this without them as well.
Thank you for reading this very long update.
Stay tuned for updates and thank you all from the bottom of our hearts.
We love you all!
Dan, Nancy and Chloe (+ Ziggy in spirit too)