Two years and eight months post stem cell transplant. What does that look like? Never in a million years did I think my life would be like this. That’s the problem with having a stem cell transplant to treat Leukemia. I’d be lying if I said I didn’t still think about it every waking day. Every ache and pain can drive you insane until your next bloodwork appointment. The fear of relapse never goes away. There are no garentees. My treatment is long over but the side effects from treatment will stick with me for the rest of my life. Many transplant recipients develop some form of Graft versus host disease. Any form of GvHD at this point is considered chronic. There is no cure for GvHD, just steroids and immunosuppressants to keep it at bay. GvHD has been affecting my mouth ever since my transplant. My mouth is extremely sensitive to spicy, hot, cold, the list goes on. The inside of my mouth and lips are permanently scared with white tissue. GvHD caused my liver enzymes to elevate but are now under control with the help of prednisone. My skin is mildly affected. It is very sensitive and I have dark pigmentation on my face, shoulders, arms and chest. My joints and muscles are sore all the time. I don’t remember the last time I woke up and felt no pain. I have been catching colds like crazy because of the immunosuppressive drugs I have to take. I developed Pleurisy after a bad RSV infection last month. The lung and chest pain caused by pleurisy is so painful and lasted six weeks. There is no treatment for Pleurisy, just rest and pain medication.
The word depressed. Over the past 3 years it has come up several times. People would use the word and I’d get angry that they would even consider using it. Anybody going through a cancer diagnosis is going to feel a little “sad” at times. About a week before my Birthday this year I was given bad news about my schooling. Long story short, I was suppose to be finished my program by the end of December 2016. A little road block came up which means I won’t be finished until June 2017. That’s another 8 months. I have been working so hard to get through school and get back to work. Trying to have a more “normal” life. But life is not cooperating. This really hit me hard. This would be my first memory of having that intense sad feeling. At one of my follow up appointments with my Hematologist, she suggested I may be depressed and I should try a new medication just to get me through this rough patch. I immediately shot down that idea. I didn’t want to believe it was that bad. I started to loose interest in going out, doing things I enjoyed. I developed terrible insomnia. I lost my appetite. I felt tired and unwell all the time, no matter how much I slept. All I wanted was some type of good news for a change.
Two weeks into January 2017 I got into my first car accident. I was on my way to a doctors appointment to see a Rheumatologist about my joint and muscle pain, go figure. I have been seeing my chiropractor weekly since the accident to manage my injuries. I wasn’t seriously hurt and neither was the other person I collided with, thank goodness. I’m lucky to be alive. The accident really shook me up enough to cause a “mental breakdown.” This was my tipping point. I have not had the smoothest past three years. It seems I am always hit with bad news or dealing with something. For about two weeks I cried every single day. I had negative thoughts that I had never experienced before. For the first time in three years I literally said I can’t do this anymore, it’s not worth it. I feel like I’m finally working again only to pay for the drugs that are keeping me alive. I felt so hopeless and stuck like time was standing still and nothing would ever get better.
During a recent visit to my chiropractor he looked at me and said, I believe some of the pain you are having could be caused by depression, and that’s not something I can fix. It would be in your best interest to speak with someone. For the first time in 3 years I was finally able to come to terms with the fact that I am indeed depressed. It was one of the hardest things for me to admit. I’m used to being the strong girl and having everyone tell me how amazing I handle everything. I didn’t realize how unhealthy that was. Bottling up my true emotions and fears just to spare the feelings of my family and friends. I don’t want people to worry about me anymore or feel bad for me, there’s nothing I hate more.
As much as I don’t want to admit I may be depressed, I know I need to seek help, apart from my family and friends. I know this is long overdue. I know this is not a bad thing and it’s not going to make things worse by any means. You can’t feel good physically if you don’t take care of your mental well being as well.
One Day At A Time 
Candace, thank you for your honest and moving post. My heart goes out to you. I often wonder what kind of life my Deb would have if she had lived. We were aware of the effects that GvHD can have after a transplant. I think about you from time to time and have wondered how you were doing. I wish things were better for you. Please do seek some help. You have been through so much. All my best, Mary Lou Perry
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