Mikenh and Surgery

abita said:

did your chemo port go in the

did your chemo port go in the neck? Mine did as he couldn't find the scapula vein. My access is about the level of my armpit. Is yours sealed with glue? Mine was. I felt pain much longer than expected. When the glue finally came off, I realized it was the glue pulling on my neck when I moved it that hurt. My neck doesn't hurt now, but it does feel very uncomfortable. I just try to remind myself the end game is that I am healed and get to live a long healthy happy life.

I actually didn’t check until just now. It’s between the top of the right breast and the collarbone with an edge on the middle of my body. The neck has little pain as there’s an incision there. I have the feeling that I won’t be running, playing tennis, or doing shoulder and chest work while on chemo. There’s other things I can do though.

I felt quite chilled and slept for a while longer under warm blankets and had a little dinner and feel a lot better and warmer now. I think that I’m going to sleep a lot tonight. I still have to wake every six hours for the antibiotics and to empty the bag.

I covered my chest with Saran Wrap this morning (taped on) so that I could take a shower. Afterwards I put a porous bandage on it secured by cloth tape. I should be able to wash the area now though they said that I shouldn't rub the area.

The check for the clinical trial of the non-opioid painkiller arrived today and it was for $400. I'm sure that I'll owe taxes on it and get a 1099 form in January.

abita said:

I am impressed that you take

I am impressed that you take so many showers. I have been showering every 5 days, because my hair needs washing 

I have decided to up my game to every 4 days.

Are you doing take home chemo? In the device that is.

I take a shower before work (sometimes at home, sometimes at the office) and take one or two showers on weekends. So almost every day to every day. We have next week off so I might take one every other day. Before cancer, I worked out every day unless I was under a lot of time pressure so that could mean two or three showers a day (I sometimes did morning and evening workouts).

I'm doing Xeloda which is the pill form of 5FU. The pills arrived in a very small package today. My previous chemo was 26 pills a day because they come in 500s and 150s which creates a discrete math problem. My chemo this time will be 4000 MG which means 8 500s per day. My previous packages had one bottle of 500s and a ton of bottles of 150s. So I get Oxaliplatin on day one of the cycle, Xeloda pills day 1 to day 14, and then 7 days off in a three-week cycle. So, no pump. I think that toxicity levels are higher with the pills though.

I looked over the paperwork from the session today and the dosage isn't indicated (it's left blank). I went onto the portal and the dosage is there. The DFCI Oncologist recommended 4,000 mg/day (2K in the morning, 2K in the evening) and that's what's prescribed in the portal. So I'll start at 7:00 AM tomorrow morning. We'll drive in for 8:45 AM and he'll stay with me until I'm done and drive me home. Not sure if I'll drive to or if he will - depends on how I feel after the Xeloda. I'm happy that it's only 8 pills a day instead of 26 in Neo-Adjuvant.

I also found a refill button on the medication page of the portal so I'll try hitting that in two weeks. The hospital has to renew it every cycle though they could try getting more than one cycle's worth of Xeloda.

Being the driver might  not be a bad idea.  Staying focused on that will take your mind off anything else.  It works for me when I have to go somewhere like today, to the dentist.  How is it that a person can not be worked up going into radiation but going to the dentist has me a nervous wreck.  I  was there for over 3 hours in the chair and the that drill drives me nuts. I can feel the bits of teeth being grinded off and the vibration circulates throughout my entire mouth hitting every nerve on the way.  I still have four or more of these to do.  Yeah, it's been a lot of years since I've sat in that chair and am grossly overdue.   

 Have fun on your  vacation and don't overdo it.

Just took the morning Xeloda. I was running though the song, My Xeloda this morning with the music by The Knack - that would make a nice song.

I whacked a bug with a boot in the basement and should have used my left arm as I could feel the impact in the port area afterwards.

I'm generally feeling a lot better in the abs and did a few situps in bed this morning (mainly to get out of bed; not for exercise). I feel a lot more comfortable carrying things. Sometimes, things that were a bit heavy would give me a twinge here or there but those are few and far between now. So the surgeon's recommendation of waiting for eight weeks is a good one (I'm a week or so away from that). A friend told me that work for most people is stressful but that it's probably less stressful for me. If I'm not working, I'm more likely to be worried, anxious, and working out more than I should.

Back home now.

The biggest side-effect during the infusion was having to pee twice - likely due to the D5W and the Oxaliplating liquid. I lost a little feeling in my fingertips and it takes a bit more effort to type and I have had some slight feelings of arthritis in my palms. I Went outside and felt the cold sensitivity due to the wind (it's about 40 degrees outside). I was covered except for my face so that's where it hit but I've been used to really bitter temperatures in the past due to the winters here so it wasn't too bad.

I drove home as my son was on a conference call and that was no problem. I got home and picked up a cold glass of water and the initial reaction was not quite pain but a lot of discomfort. I also picked up other cold objects and the cold sensitivity decreased as I held other cold things. My home office is probably 45 degrees right now so everything around me is cold. I wasn't brave enough to drink the cold water.

My wife brought me a bowl of chicken ball rice porridge and I had an ache - I guess it's that first bite thing that folks here talk about. It wasn't a sharp pain but something noticeable. I can taste the flavors in the porridge. I don't feel any tiredness though the nurse said that symptoms can kick in at any time. So, I'd say that the symptoms are as advertised but it sounds scary when others talk about it.

Table of side-effects and level

Workaround for drinking a glass of cold water:

Take a sip and keep it in your mouth, preferably the front of your mouth. Swirl it around which should warm it up to at least room temperature. Then swallow.

I tried this with a glass of cold water (carefully) and it worked for me.

I had cramps early this morning and that's likely due to drinking a lot to try to clear the body from the Oxaliplatin. The body called for it more than a mental effort on my part. So my guess is that drinking all of that water combined with the additional electrolyte consumption from the neuro-stuff going on in my body depleted electrolytes so a sandwich with a lot of salt fixed that. But I stopped at WalGreens for a box of a box of tubes with stuff similar to Pedialyte.

Then over to Target to pick up an electric kettle for my office (I might bring it home too). The benefits of the electric kettle is that it will keep water hot in my office so that I can have tea or hot water conveniently and that keeping the water hot will also warm my office. The normal temperature here is about 60-65 degrees. I could run a desktop computer with a power virus that would keep it warm but I'd have to bring one in from home (one of those old inefficient and hot computers). I have a very long walk to the kitchen (not bad for getting in steps) but it sometimes discourages me from getting fluids.

I also discovered that fresh pineapple is great for bulking up in the bag. It does require a lot of chewing though. Last night the bag wasn't watery at all which is what I've been trying to consistently achieve. I also had a cheese sandwich and macaroni and cheese.

Physically I feel great as the effects from the major surgery are fading quickly and the effects of the minor surgery have faded. The only remaining niggle is having to use my left hand to get the seatbelt. So physical symptoms are in a good place while the neuropathy stuff is something to get used to for a few days and the fatigue will set in at some point from the Xeloda. I'm glad that I had a discussion on Raynaud's with a co-worker who has it a month ago as his explanation of what he did is helpful to me.

So the challenges are there going forward. They are certainly quite different and, at this point, it seems like the chemo is easier than the surgery was. But the chemo starts off slow and gets harder while the surgery starts out very hard and gets easier. So I'm somewhat optimistic at this point.