Bad News is Good News

In the time since I wrote my last post, quite a lot has happened. After I was told I had fully relapsed I went back onto cyclosporine. Then all throughout August my blood levels were still consistently dropping and I was going in for transfusions of both blood and platelets, albeit the platelets much more often.

On a side note, I can't thank blood product donors enough for being so selfless to take the time out of their lives so that I can still live mine. When my hemoglobin drops below 85 my body has an incredibly hard time functioning properly. I can go for a short walk and get a headache from the lack of oxygen. Every morning that I wake up when my levels are low, I sit up in bed and get a white wash in front of my eyes and I feel like I'm going to pass out or fall over. Sometimes after I go up one set of stairs I need to sit down for three minutes just to catch my breath and feel strong enough to go about the rest of my day. When my hemoglobin drops into the 70's I do not feel like getting out of bed, can nap three times a day and sleep up to 16 of my 24 hours. It is more than just exhaustion, it truly makes me feel like I'm weak and sick. When I go in for my blood transfusions I am always looking forward to them! After my transfusions are over I want to go out and run or dance and I can once again feel the strength of my heartbeat! It truly feels like I've been given a second chance at life. For me that is the drastic difference two bags of blood can make. So thank you to those who donate, it means the world to those who need it!

My doctor noticed things weren't going as smoothly as the first time I was put on the drug in 2014 and so he sent me to a transplant specialist to help me understand and discuss my options. I only actually have two - three counting taking no treatment, but that's not really on the table.

At the end of August I met with the transplant doctor to discuss what benefits and risks there are regarding a transplant. When I got to the appointment it became evident that it was no longer one of my options, but had become my only option. He told me that my cyclosporine wasn't working and my body wasn't going to respond to it a second time. Even if my body had responded again it would have only been a matter of time before I relapsed for a third time and would need to undergo a transplant anyways. As he proceeded through the appointment he had the unfortunate job of telling me the risks and possible complications of having this bone marrow/stem cell transplant, and by god was there a list of them. He went through the facts and statistics, which were good for me to hear since I am a very logical person and like to know the truth no matter how difficult it is to hear. The doctor was great in not pandering to me and I managed to make it through the appointment without crying, though it wasn't easy at times. I was told there is a 60-80% chance that I will get graft versus host disease, there is a very strong chance that the chemotherapy I will go through before the transplant will leave me bald as well as sterile and unable to have children. The survival rate is around 70% which is a nice number but attached to that number is that 30% chance that I won't make it. He told me that if I get an infection in my lungs I am basically a dead girl walking.

All of these bits of information given in an hour and handed over to me felt somewhat like a death sentence. I tried to put it into perspective thinking that I am lucky this all exists to help me and if it wasn't around, I would probably die within 10 years anyways. I tried to keep my chin up but the brevity and the weight of the conversation piled itself into my head and I came home and cried...lots.

This part will get personal but I won't shy away from reality because if anyone is going through something similar and reads this, it's nice to know that you're not alone.

I was referred to a gynecologist to talk about my fertility options to hopefully save my chances of having a baby later on in life. We spoke with the doctor who was very straightforward with me, saying that there are some procedures they could do to help me but they aren't sure that I would be a possible candidate. There is a drug that I can take during my chemotherapy that will essentially shut down my ovaries so that the chemo will not attack them (as severely). This option will be safe for me and so I will go through with it but it doesn't guarantee that I will not be left sterile. The other procedure that they presented me with is harvesting and freezing my eggs. This naturally is a better option since it can almost guarantee that I will be able to save some of my eggs for later use. Due to the nature of my disease however, my platelet counts are naturally low and with the relapse making them dangerously low, she was not sure that I would be able to handle the procedure. I would need to come off of the birth control I am on which currently prevents me from having a period since my body could not handle the bleed. In turn, coming off of the pill will make me bleed and that could be dangerous. Also, during the actual egg harvesting they would need to go inside and puncture my vaginal wall with a large needle. With the female reproductive system being so vascular it would cause a significant bleed - a bleed that if my platelets could not stop, could be fatal. The only way we could go through with it, is if we could orchestrate a plan to give me enough bags of platelets to be transfused the same day the operation would take place. The more transfusions I get, the higher the number of antibodies circulating in my blood which increases my risk of rejecting the transplant. The scheduling of it all would need to be so fine tuned that if any individual thing went wrong the whole plan could be ruined. I had no idea it would be so complicated.

Being 21 years old, babies weren't something I had really put much thought into. I knew I wanted to have kids at some point in time but being so young and not being in a relationship for 3 years had really pushed those thoughts to the back of my mind. When I was told that my future might not have the option to bear children, it was quite devastating to hear. It felt like part of my femininity had been stripped from me. For me, carrying a child is a huge part of both motherhood and part of being a woman. If I can't do it, I might feel like part of me is incomplete and somehow less of a woman. I thought about having to tell my future partner and whether or not that would lead to divisive problems or a separation. So many different things crossed my mind but I finally came to the conclusion that if complete infertility happens to become the case, I would need to be thankful that while I may not have the ability to create life, I am still given a chance to keep my own through the help of so many people working together for me. I still have yet to hear from both doctors to find out if the egg freezing will be doable but I am staying hopeful that there will be a way!

It has been almost a month since my transplant information appointment and I have come to terms with most of the facts presented to me. I tried wallowing in pity for a while but it is exhausting and boring so instead I choose to live with a positive outlook. I know that there are huge risks involved but without the huge risks, I would not have my potentially huge reward: curing the disease that has plagued me over the last 2.5 years. I know that it will be a long, strenuous road ahead of me but I have an amazingly supportive family and a determination and stubbornness that will push me forward.

For the moment I am not able to attend university or have a stable job and so I am filling my days with reading, cooking, friends, appointments, and being creative in various ways...waiting patiently to hear if they have found a donor match for me.