New Agenda


THE HOSPITAL

I recently underwent my first round of RICE chemotherapy at the Mayo Clinic. For three days straight, I was admitted to the hospital. The experience, although necessary, was not a pleasant one. From June 26th through the 28th I felt a bit like a lab rat.

I was tethered to my IV pole from the minute I arrived to the minute I left. I had two tubes going from the port in my chest and an IV in my left arm which were constantly getting tangled and were an overall nuisance. I was constantly being pumped full of fluids. Whether it be the cancer killing chemotherapy poison, anti-nausea medication or a continuous flow of saline to keep me hydrated - I was being blown up like a water balloon. 

In order to keep track of my “outflow” I was forced to pee into a plastic reservoir and record the amount of urine I was producing on a whiteboard in my room. In addition, my nurses recorded every drop of water or juice I consumed to ensure I was staying properly hydrated. I have never been so grateful to be able to go to the bathroom normally again! What a weird experience.

Trying to sleep was one of the most difficult challenges. Being a typical stomach or side sleeper, I was forced to lay on my back, ‘coffin style’ as I like to call it, and try to get a good nights rest. It didn’t work. Not to mention, I was forced to give blood for labs, have a weight check performed and allow the nurses to check my vital signs at midnight and again at 4 a.m. Mind you, this is all between my constant trips to the bathroom to excrete the massive amount of fluids and record my urination measurements. This was a nightly occurrence.

If there is one positive attribute I can say about my entire stay at the Mayo Clinic, it was the staff. Their attentiveness, willingness to help, perceptiveness and warm hearted attitudes made it feel as if I was the only patient on the entire chemo floor. I think it also helped that virtually every member of my nursing team was roughly the same age as me. The connections we made with each other were instantaneous and that alleviated many stressors for both myself and Rebecca. Each time they walked in or out of my room, they were always quick to ask how I was doing or if I needed anything. The entire Mayo staff was fantastic and I have nothing but positive things to say about them. I actually look forward to seeing them all again.

SYMPTOMS

Without a doubt this new chemo is more intense than my original regimen. With the first type of chemo, after four rounds of treatment I had little to no nausea. It would happen once in awhile, but nothing I couldn’t manage. With RICE, the game has changed.

I am constantly taking compazine and zofran pills to help maintain my nausea. It sucks. I have always been a big proponent of not taking pills unless completely necessary and now I have been put into a position where I have to continually take medication. It’s still manageable, but much more prevalent than before. I have a gag reflex on a hair trigger.

With the nausea comes fatigue and headaches. I could sleep a solid twelve hours every night if I wanted to and even after doing so, feel lethargic most of the day. Everyday tasks have become more and more taxing on my body. While my cells are destroyed and rebuild themselves, my body just needs the extra rest. It’s a tough realization that I cannot do everything I was once capable of, but thats my new reality - for now.

My original x-ray from February 22nd, 2018.

A recent x-ray from June 26th, 2018.

ONWARD

I am scheduled for my second round of RICE chemotherapy beginning July 17th through July 19th and will have it performed inpatient again. I think it’s safe to say you can expect more of what you just read above.

After the second round of RICE, I am scheduled for a PET scan to see if this new chemo has done its job. This scan will be a focal point in determining the next course of action in my treatment plan.

If the RICE has failed, we go back to the drawing board and will most likely undergo an even more intense type of chemotherapy. Let’s hope this isn’t the case.

If the RICE has worked, most of the cancer will be gone. While that sounds great, it’s not the end of the road. Because my particular type of cancer has become refractory, or immune to certain types of treatment, we will press forward with an autologous stem cell transplant (SCT) to hopefully prevent any relapse of disease in the future. Sometimes this procedure is still called a bone marrow transplant. While they are in fact essentially the same procedure and the terminology is interchangeable, they do possess notable differences.

SCHEDULE FROM HELL PART 2

If all goes to plan with the RICE and my PET scan, here is a consolidated timeline of events leading up to the SCT and beyond.

Bare in mind, this is a tentative schedule and could change at any point in time.

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Aug. 6th - Stem Cell Transplant Assessment (cardiology and pulmonary testing, x-rays, labs and apheresis assessment)

Aug. 7th - Transplant Precertification and Assessment

Aug. 9th - Stem Cell Transplant Education Class

Aug. 10th - Apheresis Injection

Aug. 11th - Apheresis Injection

Aug. 12th - Apheresis Injection

Aug. 13th - Apheresis Injection and Procedure, Laboratory Visit, Catheter Placement

Aug. 14th - Apheresis Injection and Procedure

Aug. 15th - Apheresis Injection and Procedure, Laboratory Visit

Aug. 16th - Apheresis Injection and Procedure, Laboratory Visit

Aug. 17th - Apheresis Injection and Procedure, Laboratory Visit

Aug. 20th - Visit with Hematology Oncologist

Aug. 21st - Admit to Mayo Clinic Hospital

Aug. 22nd - SCT Conditioning Chemotherapy

Aug. 23rd - SCT Conditioning Chemotherapy

Aug. 24th - SCT Conditioning Chemotherapy

Aug. 25th - SCT Conditioning Chemotherapy

Aug. 26th - SCT Conditioning Chemotherapy

Aug. 27th - SCT Conditioning Chemotherapy

Aug. 28th - Stem Cell Transplant

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Following the transplant, I will be required to stay in the hospital anywhere from two to four weeks to ensure that my body properly responds to the procedure. This would put my discharge somewhere around the middle to end of September. It will all depend on how I am feeling. 

I will be required to have a 24/7 caregiver for 30 days after the transplant to safeguard my well being. I will have little to no immune system during this time and will be extremely susceptible to any and every germ coming my way. Luckily, I have an awesome wife who is willing to put her career on hold to assume this role. I am very fortunate for Rebecca. Words cannot do justice as to how grateful I am for her everyday.

The total recovery process from the transplant can take up to a year. While I do not anticipate that being the case for myself, it still remains a possibility. 

Regardless, I will require months of follow-up care and testing to ensure everything is working properly.

As I endure this infernal schedule, I will learn more about the entire process and continue to share my knowledge as certain facts are clarified. In the meantime, I explained a bit of the SCT process in my previous blog if you want to learn more.

What I do know as of now is that this process will be long, hard and could put me in the worst shape I have been in thus far. However, the long term benefits of the procedure far outweigh the short term side effects.

MOVING FORWARD

This is a lot of information to absorb all at once. I am still comprehending it myself and taking each step one day at a time. Obviously life is going to be hectic for Rebecca and I in the coming months. We may not always be available to sit down and have a conversation whether on the phone, text message or in person. Please be patient with us as we tackle these new challenges. We will continue to do our best to provide comprehensive updates on a regular basis.

I leave this post with a song that holds special meaning to me as I press forward with my new agenda.

Enjoy!

In the meantime, stay in touch, visit again and witness cancer through my lens and keyboard.

Until next time…

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