Surviving Cancer

I have been thinking about writing a blog post now for a couple of weeks. I think, I now have enough “substance” for a post to update everyone. I actually had to go back, just now, and reread my previous blog to see what I all wrote about so I can be sure to add accurate and up-to-date information in this new blog. Maybe I waited a little too long in between blog posts.

After two ultrasounds, a MRI, a PET scan and a small needle biopsy of the lump on my chest, the results from the biopsy came back as fat necrosis with chronic inflammation and negative for malignancy. This was obviously the news we were hoping for. Not long after my biopsy that occurred on January 11th, I started, once again, having quite a bit of pain associated with the lump. I brought this concern up to my doctor and he concluded that, wait for it, because the biopsy procedure I underwent produces only a small sample of tissue which was mostly just fluid, he thinks it makes sense to do another biopsy. This time it was a surgical biopsy, where I went in for surgery, I was put completely out under anesthesia, and the surgeon made an incision in my chest and took three, centimeter or so in size, samples. Now to remind everyone, this “lump” issue has been going on since at least September. It has undergone two ultrasounds, a MRI, a PET scan, TWO biopsies, and has been looked at and examined by a dozen or more specialists and doctors. My surgical biopsy was February 10th, and it was about a week before I received any results. Early results that were available to the physicians assistant I saw one day for my regular appointment showed to be negative for malignancy. Again, great news, and the news we obviously hoped for.

Several days later I received an unexpected phone call from my actual doctor. He started out by saying that he wanted to call and explain something before it got posted to MyChart. While the flow, or in other words the fluid, that was removed during the surgical biopsy was negative for malignancy, but when the actual tissue was examined under the microscope, low and behold, they found B cell acute lymphoblastic leukemia cells. What in the actual fuck? Sorry for my language, but at this point in time, it is the only word that works there. Again, this lump I have been pushing to have examined and defined, since SEPTEMBER, comes back as cancerous?!?! I was just in disbelief. So, I now have another “issue” to solve and get treatment for. Ultimately, the CAR T-cell therapy I will be getting should take care of it, no problem. It is in the meantime, until I can undergo that treatment, that I may need localized radiation. I will find out more about the plan for the lump on Monday when I have another radiation oncology consult.

Onto some good news! Today, 02/22/2022, my T-cells were collected. I spent just over 5 hours hooked up to a machine that separated my T-cells from the rest of my blood. It’s an insanely, highly scientific machine, that helps create miracles. I had an IV going into each arm. The IV that took the blood out of my body was actually placed in a way that I was unable to bend or move my left arm for the full 5 hours. Instead of removing the needle and only having a catheter in your vein, it requires that the needle is left in place for the duration of the retrieval. This was definitely the worst part of the process, so all in all, it went really well and really smooth. This machine removed my blood, separated the T-cells, and then pumped the rest back into my body. I’m pretty sure I remember the doctor saying that my body’s volume of blood was passed through the machine 5 times. It’s just so unbelievable to think about and process. My T-cells are now on their way to California, where they will undergo some modifications to become my tiny, little superhero cells.

Turn around time for my little superhero cells is 2-3 weeks. Once my cells are back at the U of M, I will then be scheduled for another week of work-up appointments to undergo before having the T-cell infusion. I’m really not positive what appointments I will all have, but I had work-up appointments last week and it consisted of 8-10 vials of blood, a lumbar puncture, an EKG, COVID test, a consult with an aphaeresis doctor, and an echocardiogram. I’m guessing there will be a few more appointments and tests needed before I receive my cells. All said and done, I’m looking at 4-5 weeks before I will receive my CAR T-cell superheroes. End of March or early April; April 7th was guesstimated by my nurse coordinator. Also, before I can get the infusion, I will also have to do three days of low dose chemotherapy, with one rest day in between finishing chemotherapy and receiving the infusion. I absolutely cannot wait for this day! I am so hopeful that this will finally make me cancer free once again.

So, I have a bit of sad news that I will follow-up with something super exciting, so please hang tight! My sad news is that my doctor said that the chemotherapy I will be receiving CAN cause hair loss. UGH. I have been hairless for like 3 years now, and I am more than ready to have my hair back. I know it seems minuscule compared to all of the other stuff I am taking on, and it is what is. I guess it’s a small price that I will pay to become cancer free and have a chance at being CURED from cancer and no longer let in control and define my life. The good news that I will share is that, usually, the infusion of the CAR T-cells involves a hospital stay of 1-2 weeks; gross and awful. However, I learned at my appointment on Monday that my chemotherapy, as well as, the infusion of my superheroes will be completely, 100% outpatient!!!!! I had a huge wave of relief wash over me. This past year, has been the worst year of my life, undoubtedly, but those hospital stays top the charts when it comes to why the past year was the worst of my life. It’s right up next to a second cancer diagnosis.

Also, with this specific treatment, it is required that I stay close to the hospital, since I will be at increased risk for certain side effects, some can be very dangerous. We have applied for and received what little financial help we can get to help for lodging. The hospital has a place that the patient and caregiver can stay at for free during times such as this, but due to Covid, all caregivers are required to be vaccinated. Which, is not compatible with myself and any potential caregivers I may have. So we will be paying out of pocket for housing in Minneapolis, for a month. Not ideal, because Josh and I so desperately want to save and buy a house of our own, sooner rather than later. Due to the unforseen 2nd cancer diagnosis and circumstance that we currently find ourselves in, this dream of ours seems just that, a dream, maybe unreachable.

We found this great place in Downtown Minneapolis that works closely with the hospital to offer short term leases on furnished apartments. I toured a two bedroom, two bath apartment several weeks ago, and just last week, we filled out an application and put down a deposit to hold an apartment unit for us when the time comes for me to start chemo and get my T-cells. I honestly think something resonated with the manger of the complex, who showed me around, because he initially gave me monthly pricing amounts for both a one bedroom and a two bedroom unit, but at the end of the tour he told me he would give the two bedroom at the price of a one bedroom. This was so unexpected, but also so very helpful. This kind gesture will save us a good $400 on the rent, which is HUGE, when you’re a family of four living off of one income. We do have another potential lead on housing reimbursement, but that is all still up in the air and pending. We will do what we have to, to get through this, and hopefully leave cancer in the past. Our dream to have a place to call our own, and only having one income are just a couple examples of the many struggles and hardships Josh and I face and have faced now, for the last 3 years.

One day, I hope to live the life Josh and I imagine and fantasize about on the daily. Josh works so hard for our family, not only at his job, but he literally WORKS to make sure I am taken care of, to make sure I have everything I need, to make sure the kids are taken care of and have everything they need. He is a man of all trades, and I. AM. THE. LUCKY. ONE.

To my followers, not counting my mom (because she would ask for one like everyday<3) keep me accountable. If you are wanting an update, please just reach out and ask for one, whether a quick private message update or a public blog post! I’m not shy about what I am going through and most days I am totally fine with talking about my journey. I appreciate each and every one of you who read my blogs and follow along with my journey. You bring me strength, compassion, empathy, sympathy, love, prayers, and so much more, all of which I NEED in order to get through this. I need to not be alone. I need to know I have an army behind me ready to fight/pray alongside me or fight/pray for me if I can no longer fight/pray for myself.

Please pray for safe travels for my superhero cells, my life depends on it.