I’m Back… and It’s Back!!!

Well, well, well… 15 months later I’m finally writing a new blog post because, as majority of you know, my Acute Myeloid Leukemia returned for the 4th time – but for the first time in my spinal fluid, and it caused some tumors to grow. Let’s back up a bit. Did I have any symptoms? How was I feeling leading up to being diagnosed? How did I know that something was wrong?

For those of you who do not know, my youngest brother Pat(23 now 24) was diagnosed with Acute Lymphoblastic Leukemia back in mid October 2021. A completely different type of leukemia than mine. Doctors have deemed it not genetic. Anyways, I won’t talk about his story too much as it is not my story to share. Due to him living with us and going through treatment at Penn, my household(my parents, Pat, and I) were put on full blown lockdown as cases of COVID were rising and his immune system was crashing due to chemo(a normal thing for leukemia treatments). Again, this was mid October 2021.

Monday after Thanksgiving, I had a follow-up appointment with my( and now our) oncologist, and everything on my end looked great! Most of my appointment was about how COVID was on the rise with the holidays(I’m seriously sick of majority of my appointments being about COVID…) and learning more about my brother’s diagnosis. Doc said “see you in 3 months!” Awesome!!

I decided in January that I really wanted to go skiing and visit friends. In order to do that, I would have to isolate for at least two weeks by myself before going back home.

President’s Day, I had the 3 month follow-up appointment with my oncologist. Everything was GREAT! My Inversion 16 subtype was NOT detected…

The stars truly did align for putting this two week ski trip together. I went to visit my friends in New Hampshire for a week, and we went to our friend’s place in Maine to go skiing for a long weekend. After that, I drove to the shore for the night(because I couldn’t go home), and woke up at 4:30am to drive from the shore to the Philadelphia airport for my 8am flight to Jackson Hole, Wyoming to go skiing with my other brother PJ and 13 of his friends. I will do another post on those trips!

Once I was done skiing, at one of the most difficult mountains in the country, I flew back to Philly and off to the shore I went to isolate by myself for 2-3 weeks to make sure I didn’t get COVID or any other sicknesses that I could bring home to my brother who just had his bone marrow transplant(brand new immune system) while I was away.

I worked remotely from the shore. I would stop working at 5 and head to my sea glass beach and go for a walk for an hour and a half. Bending down for many pieces of sea glass. My legs, ankles, and lower back were getting stronger!

After my first week, I felt a little tired. I mean, hello! I just traveled for two weeks after being in lockdown for a few months! Of course I was going to need time to recover! (Wyoming is also 2 hours behind, so my body was readjusting to that!) That first weekend at the shore, I drove 2.5 hours each way to Maryland because my friend from summer camp came from across the pond from England with her mom to visit her brother and his family. I knew I had to go see her and finally meet her family, from a distance! I went and was feeling colder than everyone else which was odd considering I went skiing in Maine when it was literally ZERO degrees. We ended up finding matching bottoms of old coco-cola pieces!! 😀

That next week, I felt a little tired but kept going for my walks. The weather was much warmer that week! The second weekend I was there, I was feeling 100%. That last week I was feeling great!

Then Thursday of that week, I noticed that my skin around my bra line was sensitive. No rash. No heat. Just sensitive. I thought it was because I was used to my sensitive skin laundry detergent and I had not been using it for 5 weeks due to traveling/isolation. Two days later, cleaned the house and packed up my entire Grand Cherokee full of my stuff(up and down flights of stairs MANY times) without any issues! Drove back home to the Philly suburbs, unloaded the full car. No issues.

Before my trip, I was running on the treadmill before work three times a week. I was doing the “Couch to 5k” program(highly recommend that by the way!) That day, due to daylight savings that happened that weekend, I was NOT running before work that morning. I decided to run after work instead. I did my run, but my legs felt a little off. A little heavy. I had just finished my run when my friend called me. I was talking to him on the phone as I was rolling my back out, and I made a noise as I went over the middle of my back. I chalked it up to being hunched over at my desk for 9.5 hours. I stopped rolling my back as I didn’t want to make anything worse. I felt fine for my shower and going to sleep.

The next day, Tuesday, I woke up with a tingly feeling from my bra line down. From that spot that I hit when I rolled my back out, down. After work, I took a hot bath, tried to stretch it out and roll my back out, and it still didn’t feel good.

Same thing on Wednesday. Not better, not worse. I went for a 1.5 mile around my neighborhood(which I joke that it has more hills than the Midwest – I went to Purdue so I can say that lol). I attempted a jog on the one flat spot, and it did not feel good. The spot in my back, and from there down felt heavy and uncomfortable.

Thursday, felt the same. I was talking to my friend on my team from work, and I was telling her how I was feeling. She told me I should probably call my oncologist. I said “ok, they will probably tell me I’m an idiot and pinched a nerve while running for the first time in 5 weeks!” HA!

I called my oncologist’s office after our weekly team meeting(virtual), and scheduled an appointment for later that morning. I drove myself down to Penn. I met with my oncologist’s new nurse practitioner who was not a new face to me! It was the nurse I had inpatient who gave me my bone marrow transplant!! (my Penn world gets smaller and smaller every day) She did a neurology test on me. Everything was operating totally fine. I had balance, my vision was great. I just had the tingly/numbing feeling from that spot in my back down. I also realized that I was extremely constipated and couldn’t figure out why. When you’re a cancer patient, you know exactly what would cause you to be backed up…

My nurse practitioner said I should do an MRI of my back to see why that spot was hurting me… stay tuned for another post later this week for what happens next!!

** I will forever be thankful for my friend Katie(from work) who told me to call my oncologist. Leukemia is a quick moving, ugly beast, and it was a VERY good thing I went down to Penn that day. My company is 2 for 2 for pushing me to saving my life!