Surviving Cancer

I really haven’t written in quite some time, and I can tell you why that is. After my last blog on May 10th, I was so optimistic about the upcoming summer and just making memories with my kids. But, different plans were in store for me. On May 18th I awoke early in the morning, around 5:15 AM, to excruciating, right side chest pain and difficulty taking deep breaths and just breathing in general. I tried taking some pain killers, but after about 15 minutes, I had had enough, and realized this was more serious than I had initially thought. I woke up my husband, Josh, and told him I needed to go to the hospital. When it comes to cancer, you don’t take anything lightly, so he jumped up and immediately started getting ready. I headed upstairs to let my mom know that I needed to go to the hospital and that she would need to take care of our kids.

The drive to the hospital I needed to go to takes about an hour. I remember being miserable the entire way, but also don’t remember being in the vehicle that long, the drive is a blur. Once we got to the ER, checked-in, and roomed, it wasn’t long after that that I blacked out, so again, some of the details coming up are not from my own memory, but from my husbands. I basically had to have him relive the trauma he experienced, in order to write this blog. But I felt strongly that my followers deserved an update. After I blacked out, Josh left the room to find some cell phone service so he could call his work and tell them he would not be coming in. During that time, my body began to crash and a handful of doctors and nurses were rushed to my room to assist. Upon his return, he was told he was not allowed to be there because the results of his COVID test weren’t back. So a very rude nurse made him leave.

It was about 20 or so minutes before Josh received a call from a nurse telling him his COVID test came back negative and he was allowed to come back. However, I was being moved to the 5th floor, which is the bone marrow transplant floor. By the time he got up there, and before he even saw me, they were wheeling me out of my room wearing a BiPap ventilator, and heading to the ICU. Josh was able to see me a couple times right away for only a few minutes at a time. This was due to the fact that the nurses needed to get me changed and hooked up to machines and IV’s. I was put on 3 different vasopressors. For those who don’t know, “A vasopressor is a drug that healthcare providers use to make blood vessels constrict or become narrow in people with low blood pressure. Often, these are people in shock who are unable to get enough blood to their vital organs. Without oxygen-rich blood, your organs can’t function, which can be fatal.” The doctor working to keep me alive told Josh that I was over the maximum dose of vasopressors, because the normal maximum was not working to keep my blood pressure high enough. The only reason they did this was because I was young and they figured my body could handle it. Boy am I glad they made that decision for me!

My mom arrived at the hospital around 12:30 PM. She was driven down by a friend. Josh was, of course, sending her updates, and I know she was a wreck. The day was a blur for Josh. He spent a lot of time in the hall. The curtain to my room would be pulled often and all he could do was listen and watch nurses shuffling about the room. It was about this time that they brought a doctor in to place an arterial line in me so they could get a more accurate blood pressure 24/7. It was during this that I have my first memories of the day after initially blacking out. They originally tried to get the line placed in my left arm with no avail. They moved onto the groin and failed there too. They were finally able to get it placed in my right armpit area. It was during all of that, that I remember being poked and stabbed with a needle, over and over and over again. I just remember wanting them to stop hurting me, but not being able to say or do anything about it.

It took the nurses and doctors several hours to get my arterial line placed, and Josh and my mom were not allowed in the room at all during that time. Josh remembers crying a lot, praying, and feeling sick to his stomach with worry and anxiety. Before they came in to see me afterward, they talked with the doctor. The doctor was very concerned about me, and really didn’t know if I was going to pull through or not. The doctor told Josh and my mom that they weren’t going to give up on me but that it wasn’t looking great. It was at this time, that the doctor asked Josh if we had any kids or other family members that wanted to come see me. (Just in case I didn’t make it.)

Right after that conversation, the chaplain came around and asked if she could pray for me. So, Josh, my mom, and the chaplain, went into my room and surrounded me on all sides, Josh and my mom holding my hands, and prayed over me. It was right after this that Josh made his Facebook post asking for prayers from our many friends and followers. We truly believe it was because of all of those prayers and, of course, the doctors and nurses care, that pulled me through.

I was monitored very closely the entire day, was given a ton of medications, they used ice packs to keep me cool, and even though I had a double lumen PICC line, they still needed more access points. So, nurses were in and out trying to place an IV in my left arm, but because of how constricted my blood vessels were, it took many, many placements and pokes before they were successful.

I wasn’t completely stable at the end of visiting hours, so they let Josh and my mom stay in my room and sleep on the floor. I do remember them being there and remembering how comforting it was that they were just feet away from me. Through all of my lengthy hospital stays, I have not once been allowed an overnight visitor due to COVID restrictions. That was one of the main reasons my hospital stays were so miserable and a big part of why I have PTSD from them all. Well, at about 3:30 in the morning they determined that I was stable and because Josh and my mom had woken up to check on me, the nurses decided that since they were awake that they would ask them to leave. Can you say rude and insensitive? I get that it’s a policy, but for real. I couldn’t believe it. I remember being pretty angry, but I was still on the BiPap and really didn’t have the energy to do anything about it anyway.

I really don’t remember much over the next several days of being in the ICU. I do remember not being very fond of being there though, with urinary catheters, bed pans, commodes, and IV pokes to name a few. The doctors would soon find that a bacteria called Psuedomonas was introduced into my bloodstream through my PICC line. Which is what put me into septic shock. This bacteria travelled to my lungs causing, a very severe case of, pneumonia. Now, for those of you who don’t know, Psuedomonas is a bacteria found, literally, everywhere. It’s commonly found in soil, water and plants, but can be found living on people’s skin, as well. After CAR-T, I was very immunosuppressed, which put me at great risk for contracting infections. But I really don’t think there was anyway I could have prevented my body from getting this infection.

Jumping forward, after spending 3 days in the ICU, I was finally transferred back to the BMT floor, but I wasn’t out of the woods yet. I was still battling a severe case of pneumonia. Breathing was difficult, and I was in excruciating pain at times, especially if I had to lay down or flat. I had to undergo two separate bronchoscopy’s and two separate thoracentesis procedures. Neither of which, are pleasant by any means. A bronchoscopy is a procedure that lets doctors look at your lungs and air passages. This is done by the doctors passing a tube down your throat and into your lungs. A thoracentesis is a procedure to remove fluid or air from the space around your lungs. This was accomplished by passing a needle between two of my ribs on my back and into the space surrounding my lungs. During my second thoracentesis procedure the doctor removed about 3 soda cans worth of fluid from around my lung. You would think this would have given me some relief. But it actually caused me a great deal of pain afterwards, until my lung was able to readjust.

I spent a total of 3 weeks in the hospital and was finally discharged on May 31st. Due to the nature of my stay, it was decided that staying in a hotel following my discharge would be best, at least for a little while. So, Josh booked a room with a little kitchenette within a mile of the hospital for the following 12 days. I was discharged and sent home with an oxygen machine because I still wasn’t able to keep my oxygen levels where they needed to be. I was very weak and frail. I had already lost a lot of weight from undergoing CAR-T and now I had lost even more weight that I really didn’t have to lose in the first place. I am still well below a normal weight for me, and have lost over 50 pounds since my bone marrow transplant in July 2021.

It took me so long to want to and be able to write this blog because I knew I would need help. Not only was this a traumatic event for me, but for my husband and mom, especially, who lived this event on the daily with me. My close family and friends who knew about it at the time too, of course, have their own form of trauma from it. I really didn’t want to have to ask Josh what all happened during the time that I was blacked out or unconscious, but in order to write this blog, it had to be done. I just knew a certain amount of time had to pass before it felt ok to talk about. My whole family has trauma of their own from this scare, and I will never truly know what they went through during that time.

What I do know is that, I am alive. I am well. I am still cancer free. I never really got the summer I was so desperately wanting. However, I defeated all odds that dreadful day of, May 18th, and am still here today to write about my story and share my experience.

What’s ahead? You ask. Results are in from a couple of biopsies that showed that I am still cancer free, but after CAR-T, my marrow is no longer making red and white blood cells or platelets like it needs to. So, I am waiting on having a stem cell boost. Hopefully happening very, very soon. This process involves going back to my original donor and asking for just stem cells. Those cells will then be infused into my body and the hope is that they mature into those blood and platelet making cells that I am lacking. I have been going to the clinic 3 times a week since leaving the hospital in order to check my levels and get infusions of those products, if need be. After the boost, I hope to see the number of clinic visits go down, significantly. I will also be able to finally get my PICC line out. Still a lot ahead cancer wise. It will be an ongoing, lifelong thing, but I truly hope and pray that the worst is over. I think I have had enough. I’ve endured my share of pain, disappointment, sick days, time away from my husband and kids, and so much more.