Today was a good day. I drove Frank and Liz to that airport and for the most part traffic was light. It was bittersweet sending them off since I had started to grow accustomed to having them around, but I do like having my house to myself (and Isabella).
I went into work and generally the day there was pretty good also. It is hard sometimes to see progress even though you spend a lot of time doing things, but I think progress is being made.
When I got home, I had 2 packages waiting at the door. One was my order of supplies, and the other was a box of samples. I will inventory them tomorrow, but for now I am feeling comfortable with my reserves. Even better, the appliance that I applied on Monday night is still holding up and I hope to get the full 3 days out of it. If I make that, I will feel more confident in my skills and my skin will hopefully have had that time to recover from the weekend trauma.
Today I woke up with a single appliance left in reserve after changing out again last night. I found a really good video online that suggested some things that I had not tried before that I am trying, mainly one where I rotated the square barrier 45 degrees to apply in as a diamond which allowed the adhesive to attach to skin that had not received quite so much abuse. I even felt confident enough to shower with it (which also could help since previously I had been taking bird baths, first because of the infusion pump, then because of my fear about the seal, so there was certainly some potential for body oils to seep into the area where the adhesive sits. I am hopeful that this will last the expected 3 days.
My stress was relieved when the nurse came and had 4 appliances with her, then later my Amazon order came with the parts I needed to assemble another 4. In addition I spoke with a representative from another appliance manufacturer and have samples on the way, expected tomorrow. To put a cherry on it, the nurse confirmed that my normal order had been processed, and I received both an email and call from the vendor that it was on the way, along with a tracking number. I should be well stocked by the end of the week, and hope to keep the 8 appliances that I currently have on hand (not counting the one in my emergency kit) as a reserve supply.
As for the chemotherapy part of things, I feel good, with no obvious signs of side effects yet. Maybe a little sensitivity in my gums, so I am using a soft bristle tooth brush now as suggested. Around the nurses visit I worked a normal day again, and continue to feel good about having that to focus on during this process. Some folks then they hear that my chemotherapy is planned for six months think that is a long time, but when I challenge those same people to develop a new product in the same six months, it all of a sudden seems very short.
Frank and Liz fly back to Pittsburgh tomorrow. It was awesome having them here and I will miss the company, but Isabella and I are ready to get back to a little more routine, and I am certain that Frank and Liz are more than ready to get back to their lives. Thanks go out to my niece Emily and nephew EJ for their efforts keeping things going back in Pittsburgh while they were here.
I was hoping for a visit from the nurse today, but after not hearing from her by 11AM, I made a call. Talking with her we arranged for her to come tomorrow morning and to bring some backup supplies, which along with the Amazon order I expect tomorrow should alleviate that stress.
I noticed the adhesive bubbling last night before bed on the opposite side where I had failures before. Having tried with no success to use various types of medical tape before, I was not too hopeful, but recalled that in the last partial order there were some strips included that were actually intended for this purpose. They provide a more elastic material that can stretch a bit and return to shape without separating. I used some q-tips to make sure the area under the lifting was clean then affixed one of these devices to secure it all in place. After a full day with this accommodation, it is still attached and no leaks detected. I did notice during that action that my manly belly hairs are growing back and could be the cause of that failure. When I change my apparatus next, I will make sure to take time to shave it bare before placing the barrier.
Otherwise I spent the day working from home, then chilled with my brother and his wife.
Other than the stress about my low supplies, today went well. I did end up burning through another apparatus when the adhesive on the one I installed in the middle of the night lost hold. I tried for awhile to augment it with tape before it gave out, but ultimately that is only going to buy a few hours at best.
I am hoping / suspecting that I had two points of failure and have hopefully addressed them this time. I noticed on this one that my stoma had shrunk (as expected) so I remeasured from scratch and cut the backing hole smaller than before. That should then leave more surface area for the seal and adhesion while also preventing waste from leaking to the seal as easily. The second thing was at the point where the adhesive touches the skin. I spent considerable extra time (and discomfort) making sure that I had removed any residue from around the stoma and on any surface where the backing piece adhesive makes contact. This skin is a bit sensitive from the previous failures, so it was a bit painful at times, but necessary. If this one does not hold, I will start to worry that the dry skin possible side-effect of one of my chemo drugs may be impacting the site. That is just conjecture at this point and of course and if necessary I will discuss with my medical team.
Otherwise we watched seasons 3 and 4 of Black Adder and chilled for the day.
Today was for the most part good. I woke unexpectedly early to find that my apparatus had become detached from my in the night. It was the night of the third day, so I was reaching the end of life for that one, but still, not how one wants to wake at 3AM. I took it in stride though and began to replace it with a new one from my now dwindling stock pile. As I was working on the process I discovered that my bottle of spray on barrier film was empty which gave me grave concerns as to how well this one would stay attached since the irritation to my skin also warranted using the powder, which the barrier film is supposed to go over top of to seal it in and present a reliable surface for the adhesive. Nonetheless, I persevered and did my best to create a good surface to the adhesive. Once that was taken care of, I proceeded with cleaning up the mess and getting everything sorted back out, then went back to sleep.
In the proper morning, I discussed the nights adventure with my brother and his wife, and after a little research, Liz found a relatively local medical supply house that was open and carried the barrier film. Since my confidence in the apparatus attached to me was in doubt, they kindly drove the 50 minutes to pick up a couple of bottles, and some other supplies that were available that I was short on.
Tonight I was very thankful for that caution. As I was preparing for bed, I noticed that the adhesive on one side had lifted and curled back on itself. This of course would be catastrophic since that adhesive is the only think keeping the device attached to me, and the waste that it captures contained. I was forced to once again dive into my dwindling supply and replace the faulty apparatus. I expect a visit from the home care nurse on Monday, where my primary, secondary and all other goals is to get instructed in how to order these supplies myself and get a decent stockpile on hand to avoid the stress I felt today. As someone who prides himself on self-reliance and independence, it is very frustrating to be relying on someone else for this critical task.
Other than my little adventure, today was pretty relaxed. I hung out at home and watched a movie, napped, and otherwise took it easy. My vitals all look normal (and good) and so far I have not observed any signs of the side effects from the chemo drugs. That does not mean too much at this point since it has only been one treatment, but I will take what I can get.
Today I turned in my infusion pump. After carrying it around for 2 days, it was nice to move without my hip pack attached. The steroid that they gave me during day 1 must have worn out since I was much less “zoomy” today and even took a nap.
I still feel good but I do need to contact the home care nurse to make sure more supplies are on order. As for the chemotherapy itself, we will just need to see how I react with each successive dose. Blood work next Friday, and another treatment (this time with the big guns) the following Wednesday.
I spent the day with the infusion pump, slowly giving me doses of the 5-FU all day. So far I have not observed any particular side effects from it. I did experience the cold sensitivity yesterday to the Oxalaplatin, but nothing too major.
I went into work and was able to put in a normal day. It is a little bit of a nuisance dealing with the hip pack for the infusion pump along with the pouch for the ileostomy. The belt of the hip pack has a tendency to slip down and block out part of the pouch, and of course having that belt crossing over the area where my sutures are still healing is a little bit uncomfortable. I can totally handle a little bit of discomfort though for what this is supposed to do for me.
I should get my new work laptop tomorrow. That is pretty exciting since it will be lighter than my now 5 year old one and should have better battery life. The lighter will be nice since I will be carting it back and forth more.
I plan to spend more time working from home after tomorrow to minimize my potential for getting exposed to sickness. I won’t get my next blood work until next Friday, but it is likely that these drugs will lower my various blood cell counts so better safe.
It is nice being on campus and getting to interact with folks in a more impromptu setting. Working from home can become isolating since unless you have a specific meeting or reason to contact someone, you don’t get those random hallway meetings.
I am definitely looking forward to turning in the pump tomorrow and being free of the hip pack for 10 days.
I can’t say the first treatment is done since I sit here typing this with the pump attached to my hip injecting me with small doses of the 5-FU.
I arrived for the treatment early (as is my habit) and they had me in the room pretty quickly. The room is pretty large with about a dozen chairs for patients and IV stands at each. I got to pick out my chair which statistically will be where I sit for all of the treatments (it was a good location, with my back to a wall and sight lines of the whole room). I started out with them bringing my Mediport online and starting an IV drip of fluids. Shortly after starting this I discovered that I am slightly allergic to the clear bandage that they used to cover the port site ( it started getting itchy and when the nurse eventually came by and I pointed it out, she declared me allergic to that particular type of bandage and changed it out with a different type. Eventually after that the redness subsided and I was no longer itchy. I guess I can no longer claim to have no allergies.
The session lasted about 4 hours and consisted of a series of IV delivered bags containing the various drugs on my card. The longest one was a 2 hour infusion of the Oxalaplatin. After that one she primed me with a shot of the 5-FU to see if I had any immediate adverse reactions, then hooked up the pump system and sent me on my way.
I am happy to say that so far I have not felt any specific side effects other than a general fatigue that could also be attributed to waking up early and essentially sitting doing nothing for 4+ hours. If I am feeling up to it, I may go into work tomorrow, otherwise I will work from home.
Today started out like the last two. I woke and went into work. Thankfully I received a call shortly after getting in confirming that my chemotherapy treatments start tomorrow at 9AM PST. In the afternoon I met with my surgeon for a follow-up and everything is healing nicely.
To prepare for my treatment, I got my hair cut. Although it is the shortest I have worn it in about 30 years, I stopped short of full chrome. This short it is easy to deal with on days where I cannot shower due to having the pump, and if it does fall out, it will be easy to clean up.
Last photo of old hair
Hair cut and ready to start chemo.
Today was a standard work day. Tomorrow is the follow-up with the surgeon and hopefully (the gods of insurance willing) Wednesday will start the chemotherapy. There is really nothing else to say for today.