Yes, my decision is made. I will be going ahead with the auto stem cell transplant. There are a number of reasons why.
1. The feedback I was getting from friends and family was nearly all encouragement to go for it!
2. This just felt “right”. There was a rightness to this decision, a deep peace, that I’ve not had before when I looked at the possibility of a stem cell transplant. It just seemed like God saying, “Now is the time.”
3. I have been having symptoms again, something I’ve kept quiet about up until now, not wanting to panic anyone. This cancer isn’t content to lie quiet.
4. If I have a chance to beat this cancer once and for all, it’s worth a try! So, here I am, poised on the brink of another adventure with cancer.
I do not yet know when this whole process will begin. I’ve requested that we don’t start for at least another week. I have a lot of things to wrap up, a lot of stuff to organize and prepare for, especially at work. I have no idea what kind of timeline Dr. Rybka is looking at for beginning this. I will keep you updated as I know more.
Below is an explanation of the process. I’m sure I will modify this as we go along and I learn more. But this is my basic understanding. And of course, this whole process and the speed with which it goes all depends on how well I can handle the chemo.
- I will start out by receiving two chemotherapy treatments, approximately three weeks apart. Though the chemo for these is not as strong as I will get during the transplant process, they will still be far stronger than the CHOP-R regimen I received before. There are two different chemo regimens that are options: R-ICE and ESHAP-R (remember that each letter in these acronyms stands for the name of one of the drugs used in the chemotherapy treatment.) So R-ICE is 4 drugs, ESHAP-R is 6. For R-ICE I would need to be admitted to the hospital for the length of the chemotherapy, approximately 5 days. For ESHAP-R I would not be admitted, but would still need to be at the hospital every day for treatment for about 5 days.
- There are two reasons for these two initial treatments: to destroy as much cancer as possible before beginning the transplant process and to ascertain whether or not the cancer still responds to chemotherapy. Therefore, they will follow up these two treatments with a scan to see what effect it’s had on the cancer. If there is no change, that means the cancer is chemo-resistant and therefore the stronger chemotherapy during the transplant process would likewise have no effect. In that case, there would be no point in continuing with the stem cell transplant.
- Approximately 3 weeks after the 2ndtreatment, I will undergo tests to verify my ability to handle the transplant process: heart, lung, and blood tests.
- Also around that time, I will receive a new, larger port for collection of the stem cells. I still have a port (a medi-line) in my chest which we can use for the first two chemo treatments.
- Then will follow the stem cell harvest. The basic process is that an IV is hooked into each arm (or they use the port) and run the blood out of one arm, through a machine that separates the needed stem cells, then back into your body. My understanding is that it takes maybe a day or two for stem cell harvest, at least if they can get enough the first time around. If not, they will hook me up multiple days until they get the amount they need. They will then freeze the cells until we need to put them back into my body.
- Keep in mind this will be an autologous stem cell transplant, meaning they will use my own cells rather than getting cells from a donor. And oh horrors, I just found out I will probably be given Neulasta to stimulate the production of stem cells prior to the harvest. I had that drug once during my last bout with chemotherapy (it also helps with white blood cell creation), and I was very miserable for a few days. It makes the bones really, really achy like a bad case of the flu. In fact, it feels worse than the flu!
- Following the stem cell harvest, I will be admitted to the hospital for an approximately 3 week stay. First will be 7 days of chemo, with one day of rest as my body flushes the chemo out. Then the stem cells will be reintroduced into my body via IV. Then will follow 10-12 days of close watching as the stem cells replant themselves and my immunity and blood counts slowly come back up. Of course, this stay could be shorter or longer, all depending on how well I handle the chemotherapy and how soon I bounce back.
- After coming home, I will return to the hospital periodically for checkups, and guard against germs and crowds as it takes a full 6 months for immunity to return to normal. So I will need to stay close to home for a while afterwards and possibly wear masks when out and about. In fact, I expect masks and I will get quite acquainted throughout this whole process! I am not looking forward to that as I hate the things! 🙂
- All told, I expect the process to take a minimum of 10 weeks, perhaps closer to 3 months. Till I can be a sociable human being again, probably at least 4 months, maybe longer.
Yes, I think I will feel like stuck hog and/or a wounded war hero until they are done with me. 🙂 However, I can’t really say the procedure terrifies me that much. It’s only a more intensified version of what I’ve already experienced. In fact, I rather look forward to parts of it! I find the medical world fascinating, and this will be a whole new adventure. In talking to Mom on the phone last night, I told her that we are going to have fun during this whole thing, or at least try! I laughed when she sputtered. I think that might be a lot harder for her than for me.
I’m determined that we will treat this as simply another challenge to embrace and learn and explore, another opportunity to live fully in the moment. Oh, I know. There will be days when I will not want to have fun or embrace the moment, sick, tough, miserable days when all I can do is cry and hold on. I know enough about chemo and I’ve done enough research that I’m going into this with my eyes open. I’m not expecting this to be a piece of cake. But that’s okay too. All of it is to be lived as part of a full life. I think I’m finally learning that.
The first time I went through chemotherapy I had practically no side effects. What I did experience was more in the way of annoying. None of the “horror” stories about chemo were true for me. And I would expect it will be similar this time around. Certainly, it will be much harder on my body than the first chemo was, simply because these are much stronger drugs. But since I handled the first round so well, I would expect my body will respond similarly again. Only God knows, of course, and if I don’t get off easy, that’s okay too, because there will be grace enough no matter what. However, I am young and strong, with no other conditions that could complicate this process. In addition, the cancer is not advanced far at all, being only in Stage 1 as of now. That in itself is one of the biggest pluses when doing a stem cell transplant. All in all, I am expecting the best and mentally preparing myself for the worst! So no matter what happens, I have my bases covered. 🙂
Oh, yes, I do get to lose my hair again. I’m secretly looking forward to it again! I love the maintenance-free aspect of being bald. Honestly, though, I do look ugly when I’m bald. Really ugly. 🙂 I didn’t realize that until recently when Dad sent me some pictures that Mom had taken of me when I was bald. My first response when I saw them was a shocked “I didn’t know I was so ugly!” How we all laughed! Yes, it will be a little sad to lose all the thick, curly mane of hair I finally have. But it will grow back again and I can have fun going through the process of hair growth all over again. Maybe THIS time it will come in red. 🙂 (wishful thinking)
I think the hardest part of deciding to do the stem cell transplant wasn’t the idea of the procedure itself. It was because it meant surrendering my dreams. Some of you know about my plans for college this fall to gain training to serve others. I had been accepted to Moody Bible Institute in Washington state; I had found a place to rent. I had taken a trip out there to tour the college and the area. The pieces were falling into place. Everything was so close I could almost touch it.
And boom! Stem cell transplant instead. There is no way I could attend school in August, so college will need to be pushed off, maybe canceled entirely. I don’t deny that that took some earnest conversations between God and I. However, I had told God all along that if He had some other plan for my life that He was supposed to stop me. Well, He has. Whether this is a permanent stopping or only a delay, I have no idea. I’ve left all that in God’s hands. I only know that whatever the future holds, it is more splendid than anything I could ever imagine.
My family is standing behind me. My siblings got their heads together and told me that they will pitch in with the living expenses for as long as I need it during this process. Thanks you all so very much! If you only know how much your unreserved caring and support means to me! Mom will be coming in again to live with me and care for me as long as I need her, and I’m sure Dad will poke his head in from time to time, in addition to driving me out of my mind at times with his concerns (but I love him for it ). 🙂
The sacrifices they are all willing to make on my behalf humbles me. And mentioning my family, makes me think of a specific prayer request I have. I know there are tough days ahead. And I know that I am not a very patient person! When I need something, I need it now! When I don’t feel well, I want to snap everyone’s head off. My longing through all this is to treat my loved ones with the same kind of love and understanding they are giving me. I guess I want to be purified through this process. I want to grow more like our Master. Your prayers for me in that respect will be greatly appreciated.
I do not know how much I will be working at my current job. Certainly, if I do work, I will be working from home. But as intense as the chemo will be, it is very likely I will have a case of “chemo brain” and be unable to think straight at least some of the time. I do intend to work as much as is possible, for I will need something to keep myself busy. We shall take it one day at a time and see how it all goes.
Most of you are probably wondering, how can YOU help? For at least part of the time, I know that visits will be prohibited or curtailed during the time my immunity is at its lowest. By all means, send me mail, emails, and texts. I remember how much they all meant to me during my last bout with cancer. Those will keep me linked to the outside world and will remind me of all the support you all give so generously. Of course, your prayers mean the world. But just as much, I will need your laughter. I need all the optimism, hope, and humor I can get. So, make me laugh. Show your hope. Oh, we won’t ignore reality, but we are going to trust in the One who has all things in His hands.