Milestones - February 16, 2013

A year ago today I had my last chemo session – I didn’t know at the time that it was going to be my last because I was scheduled for one more and then was to have a stem cell transplant. But then when things toppled over a bit and the doctors and pathologists got confused by my pathology (see “The Original Blog” post dated July 24, 2012 for more on this), the sixth chemo was cancelled and the SCT put on hold. So I didn’t get to celebrate my last chemo, I didn’t get to say goodbye to my nurses there, and due to this questionable nature of my entire illness, those little milestones that help the mind and soul, I seem miss out on. When I see photos on the Lymphoma Club page and community that I’m a part of on Facebook as well as other cancer pages of people ringing their final chemo bell (I don’t think they had that at my cancer center but nonetheless…!) or holding signs or getting to celebrate that was the last chemo and now on to the next step, I wish I got to have that moment. Because they have been utterly confused by why my pathology presented the way it did, I haven’t heard the words, “you’re in remission” – another celebratory milestone. Maybe to most people that sounds strange or silly but when you are in a battle for your life, you NEED those milestones – you need to mark your progress and battle rounds. It really is a big deal. That’s why those dates are embedded in our brains. That’s why I’ll always remember the date I was admitted to the hospital, the date of my biopsy and hearing the diagnosis, the week of my first chemo, the date of my first PET scan, the date of my last chemo. And actually now due to a beautiful coincidence, I’ll remember the date my baby stem cells were collected at the hospital. I’ll never forget that date because that was the day my friends had a baby girl! I remember scrolling through Facebook on my phone that day in the hospital and seeing the joyful news. When I saw them write about her birthday this year on Facebook, it reminded me of that day. Okay, so it probably would be a cooler story if I DID have that stem cell transplant instead of that just being the day they were collected but that’s a big deal too – it’s a big, draining process (no pun intended!) and it marks the beginning of a procedure that can save your life. So, no, it turns out after all that they didn’t need to do the transplant but my stem cells are frozen there in that big Boston hospital for the next 13 or 15 years so if I need them, they’re there and therefore, February 6 IS an important day for me. You know, it’s so cute because my friends’ daughter who now just turned one, in a strange way I relate to her because I feel like I’m starting over and in physical therapy trying to get my mobility back (so, am off balance like a child learning to walk) and I see her hair growing and it’s growing like my hair – only better – she just got her first ponytail and I still don’t have enough for that yet! LOL

But back to the milestones… so instead of hearing the labels many hear where they are in this part of the journey, what I have heard is that I have a higher chance of getting Lymphoma; I have heard that my auto-immune issues (I have had Scleroderma for about nine years now – well, officially seven years but very manageable) have complicated my case or possibly confused it; but I did hear that my first post-treatment PET CT scan didn’t have any lymph node activity and thankfully, I can report here per my last blog post that this most recent PET CT scan also didn’t show lymph node activity. After feeling like I was holding my breath for a week, I finally felt I could exhale! But I am cautiously relieved – they did see activity in my thymus gland and again in the salivary gland area and they can’t tell me exactly why but they again attribute it to the auto-immune condition – but really, they don’t know. They tell me it’s not cancer and as hard as it is to trust, I have to believe them. I do feel better – despite this lymph node flare-up I’ve been experiencing. They gave me a copy of the radiology report and it states they believe the thymus “uptake” is due to a “thymic rebound.” I didn’t read that until later so I didn’t get to ask my oncologist what that meant so I reached out to good ol’ Google and learned that while in chemo, your thymus gland can shrink and often while it’s recovering it can rebound and show up in a scan. Sometimes it’s mistaken for a relapse but my doctor never even said that. I wish he explained further what that all meant but I intend on asking him at my next appointment - but I'm glad I found that online. As far as this pain and sensation goes in my neck, I think about the beating my body took between the illness and chemo and I think my lymph nodes are now susceptible?

Anyway, I have to keep an eye on my lymph nodes and call my doctor if it gets worse or bigger and in the meantime I see him next in three months and have my next PET CT scan in six months. So as I have been doing, I will continue to work on my strength and recovery and continuing on this one day at a time thing because it really is working for me. :-) As far as milestones go, really every day is a milestone, isn’t it? Every day IS a gift.

 Bracelet that my parents gave me a few years ago, which I wore the day I saw my doc, shot while waiting to meet with him to go over results. Reminder of my faith and to believe.