Interesting Day

Treatments were scheduled to start an hour later today so we were able to enjoy a longer walk with the boys before the heat set in.

Next is a long story that I will try to keep as short as I can. I was feeling independent today so I wanted to walk to my chemo session on my own and Jon would meet up with me later and walk me back home. Throughout the evening and night before I was experiencing nausea, but didn’t want to take a pill (I won’t make that bad decision again). I did finally take a nausea pill at 5 AM, and it helped a little, but didn’t take all the nausea away. Anyway, because of the nausea I didn’t eat or drink much before I went for my chemo session. So, I arrived for my treatment with some nausea, thinking I would discuss it with the nurse. While in the waiting room (listening to some guy tell the receptionist about his recent surgery) I broke out in a sweat. I asked for a place to lay down so they put me in a wheelchair to take me to the back. I remember getting dizzy and then I passed out. Another code blue (I don’t think I shared the something similar happened a week ago Thursday at first Radiology consultation…but I didn’t actually pass out then). I awoke on a bed with dozens or more people around me. I already had an IV in my arm and they were pumping in fluids. Once they stabilized me I was transported to the hospital emergency room. I spent another hour and one half or so there. I am fine now and was able to get both treatments back on track.

I continue to be amazed at the level of compassion and care exhibited by everyone we encounter at the Mayo Clinic. Later on in the day, people, that I didn’t know were around during my episode, we’re asking me how I was.

After I was released from the emergency room we returned to oncology and they got me right in for my treatment. The nurse spent a lot of time with us trying to understand what happened and what I was experiencing regarding nausea and anxiety. She spoke with the oncologist about my nausea meds and he made some changes. She also took care of getting me rescheduled for my radiation treatment that I had also missed that morning. Her name is “Red” and she is an amazing nurse!

I was rescheduled for radiation at 4:45, but went over an hour+ early immediately after finishing the chemo to see if they could get in earlier. They had me go right back for treatment…no waste. The nurse said they had been watching my progress throughout the day and were expecting to fit me in.

I’m learning more and more that this is not going to be easy! But I will stay strong and positive…it’s what I have to give!

Let’s give this posting a positive ending…Izzy is very comfortable in his new environment!

First Chemo

Today was another full day, starting with my first chemo treatment appointment at 7:30. My chemo regiment is three days a week, every three weeks for four cycles. Each three-day week is considered a cycle. This week is my first cycle. The oncologist will make the decision after the second cycle whether or not he thinks my body can handle the 3rd and 4th cycles. The first day of each cycle (like today) is the longer chemo day. It includes (all via IV, one after another) two anti nausea drugs, a steroid, and two chemo drugs….and all the is accompanied with extra fluids. I learned the first chemo drug usually just thins your hair (good news)….the second one usually finishes off the hair (darn it!). Oh well, I came prepared with my hats! Chemo is a fairly slow IV drip…the first one took about 2.5 hours and the second one was about an hour. All in all I was at this treatment for about 5 hours. Tomorrow’s chemo is much shorter. I only get the second chemo drug, which only takes an hour.

Later today I had another Educational Visit, this time with the Radiology nurse to learn more about the potential side effects during treatment. With many of the side effects is it not a question of if I will experience them, the question is how bad will it be…oh my! Not looking forward to any of this. The good news is that they will be there to help me through it and that they have things to make it more tolerable.

My treatment day ended with my 3rd radiation treatment.

Outside of my many appointments we are trying to stay active, which has been hard to do with all this oppressive heat we’re experiencing (and so much time tied up in appointments). Walking as much as I normally do has been challenging. I’m only averaging about 10 miles a day this week, but hope to get the mileage back up soon.

Day 2

Today was a fairly short day. I had my second radiation treatment at 7:15 this morning. The process was quicker than it was yesterday, but by afternoon the nausea set in. It was tolerable so I can’t complain. No other side effects yet. 🤞

At 9:00 we met with the radiology oncologist. Dr. Owen reviewed the radiation plan and showed us some imaging of my radiated area. The imaging shows that my small intestines dip a little lower that they like so there are some concerns of potential residual damage from the radiation. She said that they may be able to be lessened the risk by switching from my current photon radiation treatment to a Proton radiation treatment.  “Proton therapy is an advanced form of radiation therapy that sends a powerful beam of protons to the precise site of a tumor. Once the proton beam reaches the tumor, it conforms to its shape and depth, and only then releases its full energy. It then stops, sparing surrounding tissue.” The problem (because there is aways a problem 😁) is that the proton therapy has to be approved by my insurance company, and most of the time it is denied based on it being experimental - even though it has been in use for over 20 years. It is scary the control your insurance company has over your care! Anyway, my fingers are crossed! We are continuing with the traditional photon treatment while we wait for the insurance company to decide.

One piece of good news. It is not an absolute…but if radiation and chemo are as successful as both oncologists hope I may not need to have surgery. So this is now my goal…do everything I can to help make these treatments successful and avoid surgery. If I end up needing it…we’ll deal with it.

My treatment day ended around 10:00 so Jon and I went for a long walk along the river before lunch.

A Good Day

It was a busy day, stating off with yet another test to see if my cancer has metastasized (which I understand is common with my type of cancer). Mayo works fast. My doctor already had the test results at my 11:00 appointment. The good news…it has NOT metastasized! What a huge relief!!! They did find an additional small (very small) tumor in one of the lymph nodes, but it is still considered “localized” -which means it will be treated without any changes to my current treatment plan.

Second piece of good news today….I don’t need to have an IV port implanted In my chest for my chemo. They feel they can administer the chemo through a regular IV in the arm. Another huge relief!!!

As I mentioned in an earlier blog - today was my first radiation treatment. I was nervous and scared, not knowing what to expect. The actual radiation was painless (we’ll see what the side effects bring), but for some reason I felt emotional afterwards when relaying the process to Jon. Not sure why…maybe it was because of all the emotional build up of getting my treatment started. Only 24 more radiation sessions left!

Busy Day

Today is going to be a busy day with a few more tests and my first radiation treatment. Here’s my schedule:

6:00 AM PET/CT Scan

8:20 AM Blood Draw

10:05 AM Office Visit with Medical Oncologist (Chemo Doc)

10:45 AM Educational Visit (Medical Oncology Department) - Not sure what this is.

11:45 AM My First Radiation Treatment

1:05 PM Phone Visit - Medical Oncology Finance Department

3:20 PM Another COVID swab test….I HATE this test!!!

I think [and hope] this is my fullest day of appointments.

Finished the PET/CT Scan and the blood work…easy peasy!

Only two pokes so far…

Home Away From Home

Today we traveled back to Rochester, MN and tomorrow I start my treatments (I’ll post more about that later).

Since we will be here five weeks we wanted to rent an apartment or house rather than stay in a hotel. It was important to me that we find a place that was bright and cheery. I did not want to stay ion a dreary hotel room. I was hoping for a place that could feel like a home…a retreat to recuperate in after my treatment. A base that could offer us some normalcy.

We visited a fairly new apartment building [called The Lofts by Mayo Park] a couple weeks ago when we were here. Because of COVID new were not able to see any of the apartments, but we were able to tour the common areas. We met the owner of the building [this was her first development project so she and Jon hit it off]. The building felt like what we were looking for, so we rented the apartment site unseen.

We lucked out. The apartment is perfect. It is everything we hoped for. It gives us peace of mind to start the next part of this journey in a place where we can be comfortable.

Our apartment is on the third floor…on the far right end.

located on a river trail.

Milton and Izzy like it!!!!

Hats 🎩

For some reason it was important to me to find a hat today. I am not a hat person so I didn’t have one just laying around. I plan to spend as much time as possible walking the trails and sidewalks throughout Rochester so I figured it was important to find something to protect my scalp after I lose my hair. I say that as if I know for sure it will happen. The odds are against my hair so I think it is better to be prepared. I’m not really sure what I think about losing my hair. It could be frightening or it could be nothing [just throw a hat on and wait for it to grow back]. I am planning on the latter.

By the way…I bought three hats today 😊.

I quickly discovered it is impossible to take a selfie with a hat on that doesn’t make you look goofy. Jon helped me out and took this picture…but I still look a little goofy! I also just noticed the hat is a little crooked.

Treatment Plan

My treatment plan will begin on Monday, July 6, at the Mayo Clinic in Rochester, MN.  So, we will head back, on Sunday, the 5th, to an apartment that we rented so we would have a place to “call home”. Izzy and Milton will be joining us and hope that they will provide a little peace and normalcy.  Our friend Bev is also going with us to help out the first few weeks we are there.  

The treatment plan is based on small cell cancer of the lung...even though my cancer is a neuroendocrine carcinoma in the rectum. There are only about 300 diagnosed cases a year of neuroendocrine cancers in the US and very few in the location of mine; so there is no specific supporting data or treatment plans. My team includes two leading oncologists that specialize in this area...so it is an informed treatment plan. 

The treatment approach consists of 25 radiation treatments administered daily (M-F) for  five weeks...coupled with chemo therapy using cisplatin. The chemo will be administered in tandem with the radiation [3 days per weeks] beginning in week 1, repeated in week 4 and then continue for two more cycles if “tolerated” after radiation is done.  They feel because I am a “young 62 year old” that an aggressive approach is the best. The final step is surgery to remove the tumor at 8-12 weeks out from the last radiation treatment. 

The Oncologist also stated that it is unusual for this type of cancer to be detected at such an early stage. He feels that there is an opportunity for a positive outcome...but reminds us that this is a highly aggressive tumor and the usual experience of reoccurrence is 50%. 

I remain scared everyday, but committed to follow the plan and beat this thing.  

Discovery

Once I heard those words “you have cancer” my mind went blank.  It was like “oh!…ok…let’s go home”.  A million thoughts ran through my mind, so fast that I couldn’t comprehend anything.

Thank God I have Jon.  He is my rock.

We quickly started to put a plan in motion after receiving advice [from a good friend who is a doctor] that the Mayo Clinic is where we needed to be.  I had my first appointment at the Mayo Clinic in Rochester, MN on Tuesday, June 16 [just 4 days after my original diagnosis].  I had a day of tests and was then sent home to wait for Mayo Clinic pathology to further test my biopsy specimen.  We returned to Mayo on Monday, June 22 for a full week of many tests and consultations. I began with a follow up with my GI doctor then moved on throughout the week to see a GI surgeon, the Radiology Oncologist and then finally the Medical Oncologist. I am so impressed with the efficiency, thoroughness, and caring nature of everyone I encountered at the Mayo Clinic.  It is definitely where we need to be.  

It was a week of good news and bad news.  One minute we were up and then the next we were down, but by late Friday we had a treatment plan.  Mayo was ready to start on Monday, but we asked to delay treatment for a week so we could go home and regroup.  We left for home on Saturday morning, June 27th.

The Mayo Building and Gonda Building (in the background), where most of my testing and consultations took place.

Diagnosis

This may be “TMI” (and maybe even a little embarrassing to talk about), but it is part of the story that leads up to my diagnosis.  In late April I started to experience blood in my stool on a daily basis.  Toward the end of May, I was still experiencing the blood in my stool so I contacted my family doctor and he referred me to a gastroenterologist. 

A lot starts to happen now in a short amount of time…

I was first seen by the gastroenterologist on June 1.  During his examination he found an ulcer in my rectum so he scheduled me for a colonoscopy and biopsy the following Tuesday, June 9.  At the end of the procedure the doctor said he believed I had rectal cancel, but the biopsy results would tell us for sure.  The doctor called Friday morning, June 12 and confirmed that I did indeed have cancer.  He further explained that it was not rectal cancer as he had originally thought, but instead it was a rare form of cancer called a high-grade neuroendocrine carcinoma.