New developments

It looks like we're coming to an end with this treatment. The Oncologist has completely stopped the Oxaliplatin due to the numbness in my fingers and feet. I received the other  drugs and will continue until th CT in November. After that he will switch me to a two drug combination that I will get once a week. He also says that now is a good time to start considering trials.  Unfortunately, all this means is I will have less options for any other treatments, if there are any others.

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Just had an interesting call from Bethesda Naval Hospital (Walter Reed National Military Medical Center) in Maryland about clinical trials. I told the RN the information above and they might want to wait until my treatments are no longer effective before doing this trial. They set me up with a telehealth appointment to discuss everything after my next CT. One thing she mentioned is they've had a guy on the trials for a year, which makes it sound like it could be effective. It would mean flying up every week for an infusion, but they pay for the flight and hotel.

Back to the Emergency Room

This has been a busy week. Wednesday I had an MRI of my lower back, which was positive for a L4/5 bulge. Then I had a mammogram because of the BRCA gene mutation. On Thursday we took Lucy to the vet to update her shots. Friday I went to Dermatology, then got my flu and Covid booster. A few hours after I went to sleep I had a pretty bad fever. I waited till morning to alert mom which she was understandably not happy with. We were told if I ever have a temperature of 100.4 I was to immediately go to the ER. This morning it was 102.7 and after a quick breakfast it was off to the ER. The blood cultures are still pending but everything else was negative. My temp came down while we were there so thankfully, there was no reason to hold me and we left about 1pm. We're guessing I had a reaction to one of the shots.

Round 11

Took a lorazepam the morning of chemo. They said it would help with my anticipatory nausea. And it seemed to help. It also made me very sleepy. I stumbled my way to valet with mom making sure I didn't fall over. Got home and straight in bed. Had a light dinner and went back to bed until morning.

Now on day 5. I’ve been really tired and weak this go around. Finally did a walk this evening. Next week I have a lot of stuff to do. I’m having a mammogram and a dermatology visit which is tied to the mutations found in t sets done months ago. I also have an MRI for the consistent back pain, and then I’ll have another CT near the end of November.

Travel preps

After our last trip, Mom and I decided to get new luggage. We replaced our Eagle Creek 20” bag with a Level 8 20”. One big difference is the 4 wheels over 2. Mom started having pain in her side from dragging her bag and I had difficulty getting down the aircraft aisles, besides the fact that if you took your eye off the 2-wheel bag for a second, it will fall over and hit someone.

Another feature is the Level 8 is a clam shell type where the old is more of one large compartment. The shape of the Level 8 uses all the space available to the far corners of the bags. It even has space cut out at the bottom where the wheels are to add more space. 

I've already tested packing the Level 8 and I’m able to get all my clothes on one side and my gear on the other with space left over. One way to save space is packing merino wool clothes. All of the shirts, skivies and my new sweater from Norway is merino wool. I bought some lined pants from Duluth Trading Company, but I will have to check on the weather outlook before we go. The pants may end up being way too hot.

The Rick Steves backpack is used for my personal item bag on the plane and a day pack at our destination. The cross body bag is where I keep my money and credit cards. When wearing it, my arm naturally covers the bag and it can go under jackets so I am not worried about pickpockets. 

Round 10 Day 8

My newest numbers from last chemo draw. The CA-19 numbers take a week or more to result which is why you will see an old date.

CA-19
9/30/2024	398

This has been a rough week. Lots of bowel issues the last few days with cramping. Hopefully that has stabilized. Sometimes it's hard to figure out which of the many medications I need to take. You start to get in a vicious cycle of taking meds to counter meds. Another issue I had was my pump stopped working and started leaking Tuesday morning. We went in immediately and had them change out the pump and bag and got it working again. 

On Monday I was woke up at 745am by my dentist office wanting to get me in early before the hurricane to get a temp on the broken crown. If I didn't mention it, I broke the crown on a Tootsie Roll if you can believe it on our 3rd day in London. At least that is out of the way and I don't have a jagged tooth in the back of my mouth. The numbers are in and I'm not happy, but hopefully the rise was because I skipped a week and a half due to the Europe trip. I can't remember if there was any other issue recently. It seems every Round I have some kind of issue. 

Something unexpected this time was that I started getting a little nauseous before they even hooked up an IV. The RN suggested that the doctor get me a Lorazepam that I can take the morning of chemo day to prevent that. We shall see next chemo. 

My Onchologist reached out to UF and North Carolina for possible trials. UF doesn't have anything related to my condition right now. I did read where UNC was using CAR-T. They pull some T cells out of you and train them to kill cancer cells. One issue I can see is I would have to stop the treatment plan I am on now which I am not thrilled about doing since it is still working overall. He said they would call me at some point so I will have to get more info then. 

Besides the upcoming Germany Christmas Markets trips, I did plan another in April. Coincidentally, it starts on the one year anniversary of getting my diagnosis. It will be a Rhine River cruise starting in Amsterdam and ending 8 days later in Basel, Switzerland. I won't jinx it by saying much more right now because that's a long way away. 

P.S. If you see a lot of spelling errors, it is because my fingers are numb and I don't always hit the right keys and the font on Blogger is like 6pt. Deal with it!