Like any person in this world and at this point in my life (yes, I am old…change that…I am experienced!), I have many stories to share but at this specific moment I need to share when I was informed about being seriously ill and the treatment and steps that followed.

It all started in December 2021. I was having headaches, fatigue, slurred speech, and my peripheral vision was lost or out of focus. The final kicker was the fact that when I tried to write down something that was unknown to me, my handwriting was bad (even worse than it normally is!).

Sandra, my better-half, noticed these symptoms, and she took them more seriously than I did at first. We made an appointment with my primary care doctor, and she accompanied me to the appointment.

I just thought I was experiencing something like vertigo and assumed I would get some medicine and go home. Oh, boy I was wrong!

During my doctor’s visit, he recommended I go to the ER nearby. The local ER took some x-rays and an MRI and they said I had a brain tumor, and there were multiple tumors in my brain, but the biggest was on the cerebellum. At this point, I was sent to the main hospital for admission and tests.

Now, I thought I would drive myself and Sandra, as she stayed with me through all these tests.. But NOOOO…. I got my first ride in an ambulance as a patient. They took me to the ER at the main hospital and Sandra had to drive separately.

You would think that was it, but you would be wrong! The ambulance ride was uneventful, thank goodness. But it did take long. It was a Friday at rush hour in December, after all. Funny story: my youngest daughter (she’s in her twenties — yes, did I mention I am old?) was tracking my phone. She knew I had a doctor’s appointment and the route the ambulance took was near the brewery/bar district in our town. She saw my location and thought I was going there for a celebratory drink…Wrong!

When we finally arrived at the hospital, there were some unexpected hiccups. See, I had had COVID in September, so it was still in my blood. So, when they looked at my blood and knew I had a brain tumor, I was immediately put in ICU. I told them I didn’t have COVID and that I felt fine but was tired and hungry. Of course, that didn’t matter! I wasn’t supposed to have visitors either, but somehow Sandra and my sister, Karen, made it in. By now, it was Friday night, so not much was going to happen until I could convince the hospital staff that I didn’t have COVID.

At this point, I just wanted to sleep, but do you know what they do in the ICU? They wake you up every hour and ask you a bunch of questions to make sure you are “with it”. Well, that was annoying. Shortly after midnight, I got the day wrong thinking it was yesterday… oh, so sorry.

By the following day, I must have convinced them I didn’t belong in the ICU because I got a new room… but I still had the COVID label. At least the food was better, but it didn’t take much to beat the ICU! I could also sleep for longer than an hour at a time. They ran some more tests, took some more blood, but it was just part of the full picture.

Diagnosis

After multiple days, six (6) to be exact, and countless tests in the hospital, it was determined that the tumors were just in my brain and nowhere else.  So, they sent me home with a steroid, dexAMETHasone (commonly known as DECADRON), to shrink the tumors, and they scheduled a biopsy on the biggest one attached to the cerebellum. 

When the time for the biopsy came, they cut into my skull to investigate the biggest tumor. The final diagnosis was Central Nervous System non-Hodgkin’s lymphoma, aka CNS non-Hodgkin’s lymphoma, aka brain cancer.

Treatment

The doctors used a study documented at LINK (http://ashpublications.org/blood/article-pdf/125/9/1403/1388850/1403.pdf) for my treatment plan. My treatment was broken into two phases. 

Phase 1 included seven (7) cycles of chemotherapy in the hospital. Each cycle lasted 2-3 weeks. The first week was chemotherapy, followed by one to two weeks of recovery.

Phase 2 was in the hospital: intensive chemotherapy and getting my own stem cells back. The hospital I was at couldn’t do Phase 2, so I knew I would have to go to a different hospital for this part. It required harvesting of my blood to prepare for a “transplant” of my blood and stem cells. I have “transplant” in quotes because, a transplant is from getting the blood (or organ) from a different person — so it was a little different in my case. 

My personal view/feeling: I was in good spirits, positive feelings, trust in the process and of course, scared about what was going to be started. My family was ready to support me through it, which made a huge difference/positive impact.

OK, let’s jump into some more details…

Phase 1

As I mentioned, Phase 1 consisted of 7 cycles, usually 2-3 weeks apart. Hospitalization is required for chemotherapy itself, usually for 2-5 days per cycle.     

I did an R-MPV regimen that uses the drugs Rituximab, Methotrexate as the “backbone” because it can cross the blood-brain barrier, Procarbazine every other cycle, and finally Vincristine. To recover, I was given Leucovorin to rescue my tissues from the chemo. In order to leave the hospital, my blood Methotrexate level had to be less than 0.05. Drinking water and staying hydrated helped to bring that number down.

The procarbazine, commonly known as Matulane, was not available at the hospital or at my regular pharmacy, so I ordered it directly. It came to my house, and I brought it into the hospital myself for cycles 2, 4 and 6. 

 OK, let’s get into the details phase by phase:

Phase 1 – Cycle #1

Notes:

I had a low-grade fever, which increased my stay by one day.

Followed the cycle with daily injections of filgrastim-sndz, commonly known as Zarxio, for 7 days (until Saturday) to get the white blood cells up.

The daily injections had to be done at the main hospital.

My personal view/feeling: I was like in observing mode, getting to know the ways of how this was going to work. After several explanations about the process there was still a “no real” feeling.

Phase 1 – Cycle #2

Notes:

I ended up with meningitis on day 3. I don’t remember much of this cycle, so what follows is what people told me/what I gleaned from the medical records afterwards.

Evidently on day 3, I was put into the ICU. I just remember regaining consciousness in a different room and having a tube draining liquid in my head. I was eventually diagnosed with meningitis. I only had partial chemo during this time because of going to the ICU and trying to figure out what the issue was.

I was moved out of the ICU on February 15, 2022.

I was doing Physical Therapy (PT) and Occupational Therapy (OT) from a regular room because of recovering from meningitis and getting stronger. I had to show the doctors and therapists I could walk without falling before they could go home this time.

I was moved to the Acute Rehab Unit (ARU) on February 22, 2022. They will call it a discharge date but I just moved from the regular hospital to the ARU.

In the rehab unit, I was referred to the sleep disorder team. They fitted me for an APAP machine, but it wasn’t comfortable with the recovering vent they put in my head for the fluid for the meningitis.  I wore the APAP mask for maybe an hour before taking it off.  In retrospect, we shouldn’t try to do too much at the same time. (BTW, I have never gone back to do a sleep study.)

I was in the hospital this time until March 9 between the partial chemo, the ICU, and rehabilitation. I had to show the doctors and therapists I could walk without falling before I could go home this time. 

I did not get a full course of procarbazine (mutalane) this cycle due to the meningitis.

My personal view/feeling: some months after listening and reading about what happened, I realized that this was the real life threatening experience. I mean the “confused” cells in my brain were already a serious illness, but the fact is that I was very close to be gone on this cycle! Full transparency? I feel blessed that I have no tangible recollection or feeling of it. Of course, as I started recovering my “consciousness” and feeling “me” again in this world. I realized where I was physically: not able to eat by myself, walk, speak clearly or even being accurate about my own personal info! This was crazy odd but at the same time I knew I had what was needed to recover, not sure what it was but I was sure this was temporary.

Phase 1 – Cycle #3

Notes:

Since I didn’t get the full course of procarbazine (mutalane) in cycle 2, it was moved to cycle 3 and we will do it now on the odd cycles. 

We will do all 7 cycles.

I had nausea on day 2 of the cycle, but I didn’t feel bad. It was determined that it was the anti-nausea medication, zofran. (yeah I get the irony there) It was changed to phenergan.  

Rehab continued to see me, physical, occupational, and speech.

Followed the cycle with daily injections of filgrastim-sndz, commonly known as Zarxio, for 7 days.

The daily injections had to be done at the main hospital.

My personal view/feeling: I felt back to the “original” plan of treatment with the unexpected rehab additions to recover from the “deviated cycle 2”.

Phase 1 – Cycle #4

Notes:

Relatively normal cycle (can any of this be considered “normal”?)

No nausea this cycle, used phenergan.

Rehab continued to see me, physical, occupational, and speech.

Followed the cycle with daily injections of Zarxio, for 7 days at the main hospital.

My personal view/feeling: moving in the right direction with treatment, continue with focused effort on rehab. I knew I was far away from my overall physical capacity to walk, to talk, to be independent.

Phase 1 – Cycle #5

Notes:

I had nausea on day 2 of this cycle. I found out they went back to the original medication. I didn’t feel bad afterwards. Before and during it wasn’t pleasant.

Palliative care saw me this cycle, I guess I looked or acted like I needed it. 

Rehab continued to see me, physical, occupational, and speech.

Followed the cycle with daily injections of Zarxio, for 7 days at the main hospital.

I had an MRI on April 25 which showed a good response to the treatment. Another MRI will be done after the final cycle to check the status. 

I will need a neuro-cognitive rehab to retrain the brain after treatment is complete.

My personal view/feeling: the key is you or your loved ones need to advocate for you! The doctors and nurses only know you a little. You know what is right for you! Everyone is different and your voice should be heard. Remember to do it with respect, you don’t know what they have been through.

Phase 1 – Cycle #6

Notes:

Relatively normal cycle.

No nausea this cycle, used phenergan. Yeah!

Rehab continued to see me, physical, occupational, and speech.

Followed the cycle with daily injections of Zarxio, but just for 2 days at the main hospital because my numbers were good.

My personal view/feeling: yes! moving forward with clear understanding that I must keep up all my efforts! I will not say that I felt very energized and motivated every day, but I let those days be…observing and knowing that next one needs to make up what I missed the day before. The support of family, friends, nurses, and doctors were there so I must keep it up!

Phase 1, Cycle#7

Notes:

Relatively normal cycle.

No nausea this cycle, used phenergan.

Rehab continued to see me, physical, occupational, and speech.

Followed the cycle with daily injections of Zarxio, for 7 days at the main hospital.

I had an MRI on May 27 which again showed a good response to the treatment. We can use this one for referral to a new hospital for Phase 2.

My personal view/feeling: very positive about the good response to the treatment and at the same time it was the end of this phase and the transition to the next that I knew was going to be more intense considering the higher dose of the medicines.

The doctors, nurses, and overall team at the hospital for phase 1 were amazing! Despite the complication in the 2^nd cycle, they are amazing professionals, with a lot of dedication to their patients and have big hearts. I will always think of them with deep gratitude.