Yesterday I was told I was approved to undergo a stem cell transplant at Northwestern University Hospital in Chicago. Overwhelmed, excited, terrified, crushed, defeated, grateful, ecstatic, are all very strange words to put into the same sentence, but try to feel all those emotions at the same exact moment; that’s exactly how I felt the instant I walked out of my first appointment.
The day before my appointment I went to Northwestern to get yet another MRI. While the nurse was putting in my line for the contrast, she asked me if I had met Dr. Burt yet (the doctor who I would be meeting with the following day and who does the stem cell transplants). I told her I had not and she looked at me with a sympathetic smile. I already knew what she was thinking, I had read a lot about him online prior to my appointment. After a few moments of silence passed, she looked back at me and told me to not take him personally, a lot of his patients do not like his personality and that he is very direct. She also told me what a wonderful man he is and that what he’s doing for his patients is truly incredible. I’ve dealt with a lot of difficult doctors throughout my lifetime so I had tried to mentally prepare myself for the appointment and to meet him, but after she made that comment I had a permanent pit in my stomach up until meeting him.
Dr. Burt walked in and much to my surprise he immediately cracked a joke, it was exactly what I needed to hear too calm myself down. I couldn’t believe I REALLY, REALLY, liked him. He also introduced me to one of the nurses, Reagan, who works closely with him. She was so sweet, and she made me feel so much more comfortable and less like a human lab rat that I’ve felt a lot like in other previous doctors appointments. Meeting with the two of them made me feel very at peace with my decision and it helped to assure me that I was at the right place. During the appointment Dr. Burt told me that my scans weren’t great, and he was positive that the only reason I am functioning the way I am now is because of the proactive lifestyle that I live now and also because of my age. He told me that the MS would catch up with me soon as I got older. On the positive side though, he also told me that I am much healthier and stronger than most of his patients, which is the best case scenario for the SCT.
As hard as it was to hear that my disease is continuing to progress, the plan Dr. Burt laid out for me was exactly what I had hoped for. He told me that he was very confident that the treatment would work for me. Even though it was everything I wanted, I couldn’t help but just walk out of my appointment and curl up into Gav and just let it all out. Saying I am a little overwhelmed is an understatement, it looks like I have a very long, hard, year in front of me, but its all going to be completely worth it in the end, and looking at the big picture, one year of my life really is such a small amount of time when it means getting my life back and not living in fear of not knowing where my disease will end up at.
The year ahead of me is going to look a little like this: I will begin the process with fertility treatments to have my eggs frozen, I have been advised to start these as soon as possible since I will have to wait 30 days after my eggs are harvested to start the stem cell transplant process. Once my insurance approves the SCT I will go off of my medicine for 3 months to flush it out of my body. Once three months has passed with no medication, I will begin chemo therapy in order to allow my body to produce high amounts of stem cells. At this point, my own stem cells will be harvested and I will most likely loose all of my hair. This has been the absolute hardest part for me to accept, but I’ve started to come to terms with it and I know it will be back before no time. I will then be admitted to the hospital and will receive 5 more days of chemo, and on day 6 I will receive my brand new stem cells, it will take them 7-10 days to grow and I will be in the hospital most likely for 3-4 weeks, since I will basically have no immune system for a while and it would be very easy for me to get an infection. Once the process is over I will be able to return home but still have to be very cautious when it comes to germs as my immune system is still recovering and could easily develop an infection.
As awful as this process all sounds, I am really, really excited to get this journey started. Im excited to have complete control over my life and health again, I’m excited to not let doctors and medicine dictate how my life story is going to play out, and I’m excited to just maybe feel like a normal person again.
And there it is like I promised…positive vibes, loves. XOXO.
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