Follow my unexpected cancer journey...the good, the bad, and the ugly!
My Week Vacay at Seton
A look into my unexpected (yet again) 6 day stay in the hospital.
I swelled....I swelled a lot. Trust me, I know how bad I look in these (and looked in the hospital) but you had to see just how bad it was or you'd never believe me.
Yesterday, I got my first ever blood transfusion AND a platelet transfusion right after. It's weird to think I have someone else's blood and another persons platelets in me.....but it could also be what keeps me alive, you never know! On that note, GO DONATE!
The biggest issue in the hospital was my blood pressure, my heart rate, and my white blood count. They finally got my blood pressure better a few days before I left. My WBC was .2 when I was admitted (if you know anything about these numbers you know it wasn't good). I then went down to .1 for a day or two, back to .2 and lingered....still feeling like death. Finally, Wednesday it went up to .5 (still not amazing) but anything helps and even just that little helped me start feeling ok. My last day it got to 1.5 so I got to break out of the place after 6 days.
With the multiple scans done, I found out that not only was my cancer not reacting to the new chemo, it was basically putting it's middle fingers up and laughing....all while GROWING! Yup, growing, the exact opposite of what it should have and why I was hurting so bad and ended up in the hospital etc. Because my cancer didn't react positively to the new chemo, the stem cell transplant is pointless and wouldn't work. So on the plan Q. I will be starting immunotherapy TOMORROW. Fingers crossed this lovely stuff inside me has better manners and at least shows the MEH face this time around or a thumbs up.
I wanted to keep this one significantly shorter than the last one, but I'll fill some more in a different day.
OH....AND GO BUY T-SHIRTS!
On to Plan F
Friday the 13th.....what a day
Imagine this, you spend your whole life working for ONE goal and one day you are told, because of cancer that ONE thing you always wanted will NEVER happen.
I've literally worked with kids and babies over half of my life, took care of other parents babies, taught them how to sleep thru the night, put them to bed (along with every other mother duty needed), even became a teacher to be surrounded by them all day because all I ever wanted and was excited for, when the time was right, was to be pregnant, become a mom, and have my own babies.
Friday the 13th, I was told this was no longer a possibility...0% in fact. After doing my first 6 rounds of chemo I still had OK odds. Then have cancer come back and another round of chemo and that pretty much did it. If I have to have a stem cell transplant that solidifies the zero. Other options if the transplant isn't the go to option anymore have the same results. Actually, I was told I am more than likely already at 0% fertility given what my body has been thru because of cancer. So ya, there's that.
Before that fun appointment, I had an appt in the morning to see my oncology PA, she had to do my bi weekly check in and show me how to inject my own shots the next couple weeks for my white blood count. Can't sound much lovelier than that! I had been progressively feeling worse each day so I was already pretty much gone. Because of scheduling issues at the office, I ended up having to go back in to the oncologist at 3 (right after the stem cell appt) to get my last chemo of the week and finally get the 24 hour iv/pump detached from me. I felt horrible but I never complain. The longer I sat there during chemo the worse my pain got. I knew since it was Friday afternoon if I was going to get any sort of prescription help now was the time. Mind-you, it literally takes a horse pill to do anything to my body so the previous pain meds they had given me had never worked and another reason why I never asked....but this pain was tough. So, long story short, my drs nurse came to look at me and talk to me and what hadn't worked in the past etc. She then called morphine in for me (which will be brought up again at the hospital fun). Spoiler alert, the morphine didn't do a darn thing either.
Fast Forward to the Following Thursday...
As I mentioned earlier, my pain and issues were getting worse by the day (actually minute) and I literally couldn't move, breath, or stay awake. My oncologist was going to keep an eye on me and my levels and I'd be back Thursday for my next regular biweekly appt. My goal was to make it to Thursday. Not sure how pain-wise I did but we got there. Well, I was physically there but still couldn't breath, hurt all over, and was just having a rough time. My blood counts didn't come back pretty, which is what I was expecting given my current feeling of death. Apparently they were worse than I thought because both my drs said to go straight to the ER. Now a lot of you were confused why a dr couldn't just emit me to the hospital. Here is why the ER route was what I needed:
-how bad I was I would get immediate help
-I'd get every scan my dr wanted within hours which isn't the case other than the ER
-I'd immediately get hooked up to fluids and anything else needed
-ER emitted me into the ICU (or ICM, whatever Seton calls it, the step under ICU) and pretty sure my dr cant do that, nor that quickly if could
I got an echo, ekg, chest xray, more blood work, and a ct scan done. The most imporant was the CT, this scan not only showed the new round of chemo wasnt working, but that my cancer was basically just laughing at it and had deciced to GROW instead of minimize....this being why I was feeling so bad the last few weeks.
So I went in for a routine oncology appt and ended up in ICU. That was Thursday....its now Monday and I'm still here.. and told I will be for a few days. My white blood count is literally nonexistent, my heart rate is ridiculous, and my blood pressure is laughable. Thankfully in the last few days they have gotten my blood pressure better, the other two not-so-much. So until either of those show improvement, I'll be living at the Seton Luxury Hotel.
#TeamBonnet Donation Garage Sale
A few weeks ago, my amazing cousin Abby said she wanted to put together a donation garage sale where all profits go to my cancer bills. She is definitely the queen garage saler unlike me so I told her I was in. We both started advertising and spreading the word to friends and family if they had any items they were looking to get rid of and wanted to donated to our cause we would love their donation! As I mentioned earlier, I am the worst garage saler AND haggler there is. If it's listed for $20, I give you $20. Abby, however, is a pro. Not only did we get so many beyond amazing donations to sale from a ton of gracious people, but Abby sold, sold, and sold some more! I was physically zero help at the moment with my recent cancer updates. Two weeks ago I found out the 18 shots I have to give myself these next few weeks after chemo weren’t going to be sent to me until they were paid for. I ha to start them that next day so I wasn’t sure how in the world I’d ever scrounge up $1,600....yes, that’s $200 a shot. Thanks to everyone involved, we made enough to pay for my shots! One of the many things I’ve learned since starting this cancer journey....timing is everything in life (good or bad)! Now here’s hoping I don’t pass out giving myself shots 😳 🤞🏻
I've been putting off writing this particular post for a few weeks. 1: because I'm lazy and I know I won't be able to summarize it too well and it will be super long and depressing. 2: there were so many things I had to get done on my to-do list before everything was set. 3: the details were literally changing all the time so I felt silly saying one thing was happening and then the dr change it up and it not happen.
So, a couple weeks before spring break (end of February) I started gradually having some of the same signs and symptoms I had when I first got diagnosed with cancer in August. This was literally just weeks after I finished my 22 radiation treatments so I thought maybe it was just residual effects from that...but surely didn't want to think the obvious. I dealt with it for a couple weeks and it gradually got worse. There was really no point to tell anyone because I would just sound crazy and its not like anyone could do anything about it anyway. Not to mention I had JUST started my new job and the last thing I wanted was to start taking off to go to more dr appts. I waited till I was off during spring break, called my oncologist just to give him an update of what was happening and he literally sent me to get a CT scan the next day.
My week started off with the scan on Monday, dr called for me to come in the next day and said the scan showed my tumor was still active and I now have more nodes/masses showing on the other side of my chest. I already knew what she was going to say before I got there so it was no surprise to me. Since it was during spring break, my oncologist was on vacation the rest of the week and his PA got me in with him as soon as he was back Monday.
Here's where all the details got exhausting and frustrating. During this appointment he obviously couldn't 100% confirm it was cancer because you can't do that unless you biopsy the masses. Where mine are located can be a risky surgery so he really didn't want to put me through that and was pretty "convinced" that it was indeed a reoccurrence because I was literally having all the same symptoms etc, except more painful this time around. So we set up to start chemo again that following Monday. I let my school know what I found out so they could get a sub. I was under the understanding this chemo was only 2 weeks long so I could get a short term sub for two weeks then head back. Then the plans changed literally last minute and my oncologist wanted me to go see the chest cancer specialist to get his input before we started chemo. I then had to wait till the following week to get in with him.
Once at the specialist it ended up being agreed upon (begrudgingly by me) to be 100% the new nodes were in fact cancer by going into surgery and getting all spots biopsied he could get to. This is how I spent my good Friday. It wasn't fun. I ended up getting two incisions when I thought I was only getting one (that may have been selective hearing though). One incision was on my left side and they had to go thru my ribs throughout my chest. The other was under my left boob, an obvious guy dr move because they think it will be a great spot because it will be a hidden scar BUT not thinking that a) boobs sweat and how the heck am I going to keep that spot dry and b) that's exactly where my bra hits...ie either go braless or go no where. The side incision was closed with sutures I have to keep in for 3 weeks and the boob incision was thankfully closed with surgical glue.....however that works out.
I was super sore for a few days and my incisions look oh so sexy. I was told I would get my results probably Tuesday. When Tuesday rolled around and I hadn't heard anything I contacted the specialist who did the actual biopsy to see if my results were in. The nurse called me at the end of the day to tell me the final results hadn't been uploaded but she went into the hospital side and looked it up and it was indeed a reoccurrence.....ie positive results of cancer. I basically paid over $5,000 to be able to say "I told ya so". My oncologist office finally called at the end of the day Wednesday to tell me I was starting chemo Monday (for real this time) and everything was scheduled.
My first chemo round was called EPOCH. I will be doing a different regimen this time around called "RICE" which is typically used for reoccurrence patients. I will also be getting a stem cell transplant. So with that being said, it looks like I will yet again be having a super fun summer. I had to put in for catastrophic leave at work and am still waiting to hear if its approved. Yet again, the worst timing any of this could happen...but I guess you cant really plan if and when you get cancer.
Not sure how I will be able to pay for yet another round of cancer plus a transplant. I believe shirts are on the to do list and a garage sale....other than that I may start selling some appendages if anyone is interested...the non-cancerous ones of course.
Oh and I will yet again be losing my hair. Lots to look forward to.
"You either get bitter or you get better. It's that simple. You either take what's been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you."