Today is day 28 post-transplant and things are going pretty well. They are even talking about sending me home soon. That will be nice. I'm a little nervous of course, but they think I'm pretty much ready.
I think it's important for anyone who is looking into this clinical trial (which I believe is closed now, but of course FDA usually mandates a Phase III, so there are bound to be more at a future date) to really know what this is like. Unfortunately I can only account for some of it as there is about a week in there that I have no recollection of. The brain is an amazing thing when you come to think of it. I was SO incredibly sick and yet, I don't remember that part. My family, unfortunately, does. I'm sure that it will stay with my mom for a very long time.
As you are all aware, I was admitted on September 15th to the UW Hospital 8NE transplant floor. My chemo started that day. That first day was really a day of getting situated and then I just had the one chemo. The next 4 days had 2 different types of chemo twice a day and then on day 5 of being in the hospital I had 3 types of chemo (the original 2 I had the previous days as well as ATG, which is a type of Rabbit serum). I then had the last type of chemo and another ATG on the 6th day and the transplant on the 7th day of being in the hospital.
The transplant itself was actually the quickest and easiest part of the whole process. I had two bags of stem cells. They are CD34 stem cells, which are T-cell specific (if I am understanding this correctly). The whole thing really only took about a 1/2 hour. Quite amazing when you think about it. My dad took pictures of the stem cells, the transplant process, me and my bald head, LOL. When I get home and get a chance I will have him upload the pictures for me and I will post them!
The whole next week is what I don't remember. This is when things got really rough. Apparently at one point I quit breathing. Whether this was because of the transplant, the fact I have asthma that could have been exasperated or something else, we just don't know. I also had neutropenic fevers in the 105` range, shakes....my mom said my teeth would chatter. Of course there was also lots of vomiting and diarrhea. Basically she described it as being as sick as a person can get to death without really dying.
Now I don't mean to scare anyone by stating this but I think it is very important that anyone considering this be aware of just what you may go through. Of course with all things, just because this was my experience doesn't mean it would be yours. There are things that help however. Movement is VERY important. So is eating and drinking. I know at one point they had me on IV fluids both for hydration and nutrition. There are side effects that affect your taste buds and so eating is difficult, plus you can get sores in your mouth and throat. I remember having a sore throat but don't remember having a lot of problems with my mouth. From what I was told though, I did.
The best advice I could give anyone is to be strong. This is not to be taken lightly but what a miracle it is when you make it through. I do believe that there is a lot to mind over matter and having a positive attitude. From almost the beginning of this process this has felt like the right thing for me. Of course I did a lot of research into it, asked lots of questions, got as prepared as possible, put my papers in order (like wills and advanced directives), did a lot of soul searching and talked it over in detail with my family. For me it was 100% the right decision and although I know I still have awhile to go, I know in my heart it was what I needed to do for me. Risks and all.
The last week or so that I was there I remember sleeping A LOT. I remember being weak and tired more than anything but I was fortunate enough to have my mom there to keep me motivated to get up and eat, even when I did not want to. They really stressed getting up and walking because that helps to keep up your strength. So does the food. If you don't eat, you can loose muscle mass and you need that to remain healthy. As difficult as it could be to eat at times it is better to just have a few bites then have nothing at all. Also, once I was discharged and got home I really did not feeling like eating much because everything tasted like "cardboard". Or at least that is what we equate it to, I mean, who has ever tasted cardboard to really know? What I found though is that the more I forced myself to eat the faster my taste buds came back in and the more energy I had....the faster I seemed to recover from some of those side effects that were lingering from the chemo. It really is worth forcing your way through it.
Once I was home it took about a week for me to really start to feel better and now look at me. Okay, I know you can't really look at me, but I am doing great! I at at day 28 and amazed at how well I am doing. I have my moments of course, I mean, my immune system is kind of like a babies. It's brand new! But, I have more energy then I have had in YEARS. Now, from what I have been told, part of this has to do with the steroids and once I have tapered off there is a chance that the fatigue will kick in once again. Often times the first month people do really well because they have that false energy from the steroids. The second month is where things get a little shaky. For one you go home, which can bring forth all kinds of emotions. Here in Seattle it is safe. You have clinic visits twice a week, blood draws on a regular basis....basically you have a security blanket of sorts in the SCCA staff. When you get home you don't have that. What you do have however is an Oncologist, and before you go home they do make sure that you are set up. There are still weekly blood draws and regular appointments, it's just with your local doc, not the transplant team. Plus as you come off the steroids there are side effects that can happen. Gotta love the steroids.
As mentioned in the beginning of this post they are prepping me to go home soon. We are shooting for the end of next week but that will depend on if we can get everything done by then. Otherwise it will most likely be the first week of November. There are just a few things that need to be done to prepare for going home. For one I have to have an Oncologist at home. Unfortunately during this process my previous Oncologist left his practice and so I have to get a new one. Fortunately it sounds as if they can make a referral to the Oncologist who took over for my previous one. You see, when you get home you still have weekly blood draws as well as regular appointments. At least until day 100, then it's bi-weekly blood draws till 6 months out. There also is an exit appointment, called a summary review. This is where I will be given all my information as far as what meds to take till when, protocol information about future appointments, and so much more....I'm assuming. Basically the discharge so that I can go home with all the tools and information needed to be healthy! In my case however there are a couple other things that need to happen. I need to have my Hickman line removed as well as my port, and I need to have a new port put in. You see I did chemo for 2 years for my MS (the Novantrone) and so I have had my port in for almost 3 years. About a week ago my port gave out. Unfortunately I have so much scar tissue in my veins that they will need to put in a new port for all of my future blood draws. This is something I would much prefer to have done here, so they are going to make that happen.
I had my discharge appointments with OB/GYN and Nutrition today and am all set there, but I requested an appointment with Physical Therapy because I really want to achieve my ultimate health and in order to do that I need to remain active. I want to make sure that I am doing this in a safe way and so I'm hoping that a Physical Therapist will be able to give me some tips and ideas as to what I can do at home to stay active without over fatiguing myself. At least until my immune system is a bit stronger and I can really get out there! What I have decided is that I don't ever want to take light of my health again and that this is such a miracle and opportunity to regain my life that I am going to do all I can to live life to it's fullest and be as healthy as possible. Lots of changes are coming and as scary as that can be it is also VERY exciting! :)
Anyway, what I can tell you is that the staff at both the SCCA and the UW are amazing. They really know what they are doing and I could not be more pleased. Anyway, I will continue to do updates as things move along. I hope that this finds all of you doing well and that it gives you a look into what life has been like for us for the last few months. Take care!