Surviving Cancer

It hasn’t been super long since I wrote last, but life has been BUSY! At this point, I’m not even sure where to start my sharing of news or providing of updates. It has felt like years have passed since I learned of my relapse back in early January. I guess when you consider how quickly my doctor thought this CAR-T treatment would be happening, it has been quite some time.

I just recently finished radiation treatment on my cancerous chest lump. The radiaologist did identify one other area of concern during my CT scan that was also treated with radiation, still on my chest, but on the opposite side as my lump. I completed 12 treatments on both locations. This treatment required that I drive to Minneapolis, daily, for 12 consecutive days, not including weekends. So that is what I did. I would spend two hours, driving to and from Minneapolis in order to lay on a table for all of 5 minutes or less. Just our luck, radiation started right around when gas prices spiked, so I was paying right around $4.00 a gallon for those trips. Definitely not something I would like to do again. However, side effects have been minimal, and I can only note a little bit of skin irritation and fatigue, as of now.

That time seemed to fly by because my entire morning was gone by the time I got home. We decided to celebrate the completion my my radiation treatment by getting sick. The day of my last radiation appointment, my daughter began vomiting and had diarrhea accompanied with a fever and stomach pains and cramps for the next 4 days, at least.

It. Was. Miserable.

It’s not even worth going into detail about and giving myself anxiety over. It’s seriously something I never want to experience again. I felt so helpless for her, and I was dang near bringing her to the ER for dehydration. I think it was maybe late Thursday when my son started vomiting as well. He also had a slight fever at times, and did have diarrhea for a couple days. He faired much better than his sister; she got it bad. Friday morning I awoke and had some coffee but something in my head was telling I did not want to eat. I slept the entire day, and started my version of this nasty virus later on Friday afternoon. I was completely bed ridden for a good 4 days. So kids are still sick but doing a little better and maybe on the mend when I come down with it. My husband basically locked himself in the basement with the two kids and myself and took care of everything that needed to be taken care of. I did not have to worry about a thing because he so graciously took on all of the rolls that needed to be filled while I was ill. It definitely was not easy, and even though he did not get sick (knock on wood) he needs some recovery time too. It’s not easy being the caretaker of 3 sickos for days on end.

I finally turned a corner on Tuesday and was able to rejoin my family again. Between radiation fatigue and this virus I am a complete wreck. Taking care of my own children has become near impossible due to the amount of bodily fatigue I have. I was unable to eat for 4 days and am still having trouble with my appetite, and this, along with prolonged inactivity, have left me weakness and fatigue well beyond the norm. I was told to try and gain 5 pounds before my treatment, but with this virus I have now lost another 4-5 pounds. It definitely may be a concern for my doctor when I meet with him on Monday.

As if that wasn’t enough, today I started my “work-up” appointments for my CAR T-cell treatment. That means several appointments a day, for the rest of the week. While I’m trying to recover from this nasty virus. Which also means, you guessed it, driving to Minneapolis much more than usual. The appointments are pretty standard, and nothing I haven’t experienced before, sadly. Everything associated with this cancer is becoming all too familiar, and that scares me.

I have an appointment on Monday with my doctor where we will go over the results from my appointments this week, and discuss next steps in my treatment schedule. Chemotherapy will likely be next, but I am not certain as to when it will start. I am hoping and praying that my actual CAR T-cell infusion happens by April 11th. This date is well past any dates I was given during this 3 month process, so I’m ready to just get it over with. I, again, have to be within a certain distance of the hospital, so once the infusion happens, I will have officially moved to Minneapolis for the next 30 days. I haven’t done the math to see the cost of rent versus an estimated amount that we would end up spending on gas in order to make it to daily appointments. No matter the cost, we do it, because we have to. What other choice is there?

My hubs will be taking a leave of absence from work during this time. There was just no way to make things work without that happening. I need a 24/7 caregiver. We have two fairly young children. We are stretched thin, on everything it seems.

***On a side note, I have found, somewhat of a passion and/or hobby that I very much enjoy. Ever since my kids were born I have never ordered actual copies of invitations or announcements, because well they are way too damn expensive. I have created them in a digital format and then I just send it via text, since that is how people correspond these days anyways. Well, just in the past several weeks I have designed a couple birthday invitations, and I honestly get lost in what I am doing. I love creating digital media like invitations; it makes my heart happy.

With this position we find ourselves in, again, I have added a donation form to my website. Any donation made is done so in a legitimate and secure way, just an fyi, but I want no one to feel obligated to donate. Any and all donations would go towards our upcoming time away from home. For example, rent, groceries and gas, to name a few.

We survive. We survive off of love and prayers that we receive from everyone on this journey with me.