Today was just another lazy Saturday. Woke up, had breakfast then took a nap for an hour. Pretty much just lounged around, letting the body focus its energy and resources on healing. The highlight of the day was binge watching Series 2 of Black Adder.
Not much of note today. I had a visit from the home care nurse and we are going to space the remaining ones out to align with the chemo instead of burning through them all now when I don’t need it.
I bought my own instruments to monitor the same vitals that they have been taking, so I won’t be losing out on that. It may be over kill, but I figure tracking my temperature, blood pressure, and blood oxygen during this treatment regimen can’t hurt and could provide some valuable insight.
Other than that visit I worked a normal day at the office. I am healing nicely from that surgery and don’t have any fatigue issues yet, even when I take the stairs at work. I take them a little bit slower, but generally felt fine all day. The highlight of the day was sitting outside for lunch eating salmon, rice and mixed veg. It nearly felt normal. I also had a cup of decaffeinated coffee after lunch and despite being a shadow of what I would have preferred, it was actually not bad, albeit pointless.
I continue to be thankful for having such supportive friends and family, and for how awesome my team at work has been despite my limited help. I have no doubt that despite the attention that I will be placing on my treatment, we will be successful this year.
Today was pretty much just a normal work day. I spent the day at the office, mainly in meetings and just relaxed this evening. Frank and Liz did some shopping for me, laying in provisions for when I am in the chemotherapy.
For dinner Liz made a very reasonable reproduction of the Gouda Mac & Cheese I had at the Roxy last week. It was delicious (and that is not just because we ate fairly bland sandwiches for the last week). They did warn me to go primarily with a bland diet once I start the chemo and to avoid my favorite foods since if I feel nauseous it could trigger me to dislike that food later. They are suggesting to focus on calorie and nutrient dense foods, so at least for the near term I am not off carbs.
Today was my official teaching session. We arrived at the office in Encinitas and pretty quickly were back in an exam room where we started out watching a movie that covered Chemotherapy in more general terms, then one of the nurse practioners came in to brief us on the specific drugs that would make up my particular cocktail.
Here is what I will start with. In a few weeks I will pick up another drug that I will discuss at that time.
- Oxaliplatin – This drug works by damaging the RNA or DNA that tells a cell how to copy itself. The intent is to prevent the cancer cells from successfully reproducing. It has some possible side-effects, the main one being a sensitivity to cold, so it is good that I am doing this in San Diego.
- Flourouracil (aka 5-FU) – This drug works similar to the Oxaliplatin by targeting the RNA or DNA to prevent the cells from reproducing. It has several possible side effects as well, with the main one being dry palms and feet and sensitivity to light.
The side effects of these are both related to how they will effect other fast reproducing cells. Since it is not possible to just attack the cancer cells directly, the drugs will necessarily also attack other fast reproducing cells such as hair follicles, mucus membrane cells, and some skins of the dermis (skin). Since the good cells in this category far out number the cancer cells, what will kill off the cancer cells will inconvenience the other system of cells which will be able to recover over time.
The war that we will be waging is like laying siege. Once I have healed from the surgery, we will add another drug to the cocktail that will attack the ability of the cancer cells to receive oxygen and nutrients from the body. The cancer cells exist because they possess the ability to fool the body into routing blood to them to feed their needs. This last drug will restrict the bodies ability to create new routes for blood to flow which is why it needs to be delayed until my wounds are healed, but once engaged should start to starve out the cancer cells, which lacking the ability to reproduce will die without replicating resulting in the desired results.
There is a final drug in the cocktail that is not technically a chemotherapy drug, but acts to fortify those drugs. In this case it is:
- Leucovorin (aka Folinic Acid) – This is a reduced Folic acid and is used in concert with the Flouroouracil to increase the ability of the cell to hold onto the 5-FU longer. Normally the 5-FU would only stay in the cell for a short time, but this drug can enhance the binding of the 5-FU to an enzyme inside the cancer cells, increasing its effectiveness.
So that is my 411 on the chemotherapy cocktail. The 5-FU will need to be delivered over a long time, so that will require me to wear a small delivery system for 2 days as it is slowly administered. Unfortunately this precludes my original plan of getting the treatments on Friday since the delivery system will need to be removed on the second day, which would be a Sunday when the office is not open. Tentatively my first treatment is now scheduled for next Wednesday (1/24) with the deliver system removal on Friday (1/26) and a follow-up (a one off due to this being the first treatment) on Tuesday (1/30).
Other than my teaching, I worked the rest of the day after that and the highlight of the day, Liz made a ground turkey Bolognese ( marinara sauce with ground turkey ) and whole wheat spaghetti for dinner. It was a welcome change from the chicken or turkey sandwiches we had all been eating for the last week. Due to the ileostomy I need to eat more nutritionally dense foods and since my weight loss has not yet been arrested, I am looking to add more calories as well.
Today was long but good. I had to get up at 6AM for a 7:30 doctor’s appointment. The good thing about the 7:30 slot is that you are the first appointment of the day, so there is very little chance you will be waiting long. I met with my new primary care physician and got him read in for all that has been going on. He seems like a good doctor, and again confirmation that my surgery healing is progressing nicely. I am a little concerned that since last week I have lost another 5 pounds, but am trying to adjust my diet to compensate. Although I am still a good 40 pounds above my ideal weight, I want that extra fat available for when I have trouble eating after the chemo treatments, so for now I am working on adding some healthy additional calories to my current eating. Even with that 5 pounds, it is far better than I was doing in December, so still a vast improvement.
After the doctor’s appointment I headed into the office to work on site. It was really nice seeing everybody and all of the well wishing was comforting. With all of the positive thoughts and offers of assistance if I need it, keeping a positive outlook will be easier.
Probably the hardest thing being there was not drinking coffee. That cup of hot, dark deliciousness was one of my constant companions and on a day with many meetings after a particularly early wake up, I really missed it. I will explore some options in the decaf realm and see if I can find one that at least satisfies my taste craving, if not my caffeine desire.
Today was as close to a normal Monday as I have had since December. With the exception of a visit from the nurse, I spent the day in my office here at home working. Thanks to modern technology, I was able to call into some meetings and using my web cam everyone could seem my smiling face and I theirs.
The nurse came by and after I told her about my replacing of the apparatus yesterday, checked it out and declared it good. She confirmed my suspicion on why the other installation had failed prematurely. She then checked my surgery sutures and vitals and otherwise we just discussed some diet considerations for during my chemo. Tomorrow I get to met my primary care physician and get him briefed on what is up, but otherwise will spend the day working.
Today started out like the last few. I woke up feeling better than yesterday a little more healed and less sore. It was mainly another lazy day with a football game to watch at 10AM ( sorry to see the Steelers go down in flames ) and then heading off to see some friends to help celebrate Jane’s birthday.
The birthday get together was great. My blood family ( Frank and Liz ) got to meet all of my California family and it is always nice to hang with them.
I got to earn my replace your appliance badge though when somewhere along the way (probably when I twisted to look behind me while parking the car) the seal on my pouch became compromised. As soon as I got home from the party, I immediately proceeded to my room to confirm my suspicions and once confirmed, went into my supplies and using the template from Friday as a guide, I cut a new seal / base and then cleaning myself up, installed a new appliance. Crisis averted, I relaxed and watched Kingsmen – The Gold Circle and headed off to bed.
Tomorrow when the nurse comes, I will have her inspect my handiwork, but to me it looks fine. I think the problem with the Friday seal and possibly the Tuesday one as well was me being a little too gentle and not making sure that the seal was pressed down near the stoma, instead just pressing on the outside ring and relying on body heat to melt the adhesive and conform the seal correctly.
I am looking forward to this coming week. I finally see my new primary care physician on Tuesday, and then get my formal Chemotherapy training on Wednesday. I plan to work all week and my strength seems to be pretty fine at this point. I do not do well with boredom, so having work to occupy my time will be a nice break.
Not much to tell for today. Continuing to feel better as I heal from the surgery. I spent the day in mostly napping and watching television. The most noteworthy thing for the day was that I can now sit up without rolling on my side. This may not seem like much to anyone who has not had surgery on their abdomen but for those of us who have, you know what a milestone that can be.
So another day and even more healing from the surgery. The swelling has been going down daily and I almost have a wait again. I had a visit from the home care nurse today and she changed out my “apparatus” (the pouch system) for me and showed me a slightly different technique than the last one. I am hoping to start doing it more for myself during next week’s 2 visits and become independent again. She also mentioned that my surgery incision area was healing nicely. I was a little bit amused at her reaction to how few medications I am on. In a nutshell I take 2 10mg Pepcid, 1 Multi Vitamin and as needed some Tylenol. She is clearly used to older patients. My relative youth for this diagnosis and generally good health are going to be key to my tolerating the aggressive chemotherapy so I am thankful for that.
Otherwise today I managed to work a full day from home. I did take a break for a brief nap around lunch and to spend an hour with the nurse but otherwise it was great to be able to focus on something other than my recovery plan.
Tonight Frank, Liz and I went to The Roxy in Encinitas for dinner and to catch a set of Life After Electricity. It took a small amount of arm twisting to get Frank to go, but he was impressed by the band and enjoyed the food and was ultimately very happy that we made the outing. If you find yourself at the Roxy, I can strongly recommend the Gouda Mac & Cheese. It is absolutely great. If you have never seen Life After Electricity perform, then you need to find out when they are playing and get it on your calendar. The only downside to watching them is the slight intimidation you feel at seeing folks do something so well with such casual ease.
The big event for today was the meeting with my Oncologist.
I woke up feeling better than yesterday, the surgery trauma is healing nicely and my ability to sit up and get out of bed it getting much better.
The meeting was for 1:45PM, so I had the morning free to relax and fill out the 20 pages of forms for the doctor that I needed to hand in at the appointment. After that it was just time to wait until the drive to the office.
We should have left earlier. As simple as that, I thought that it would be sufficient to leave at 1PM to drive to the office on Gennesee Ave. It would have been except finding their office based on GPS routes turned out to be far from straight forward. After much stress and searching about, Frank managed to get us to the office building where I jumped from the car (well it would have been jumping if I could move faster than I do) and moved with all haste to the doctors office, hoping that my being 30 minutes late would not jeopardize the meeting. Thankfully, the staff were very understanding and they got me in to see the doctor without any fuss.
The meeting with the doctor went very positively. We discussed the plan form my treatments which will involve the chemical injections every other Friday, with a device that will distribute some over time that will go home with me for later disconnect. Progress will be assessed at 2 month intervals with adjustments made as needed. We have agreement on my hoped for outcome which would see the cancer in remission and my ileostomy reversed. Even better, she mentioned a time frame as soon as 6 months if things go well and I respond to the treatment positively. I must say that my spirits are quite buoyed by the thought that I could be that far along in that short of time. I had been thinking after discussions in the hospital that it could be over a year, so the idea that I could be back to engaging in normal pursuits by the Fall makes me very happy. I expect to have my first treatment on January 26, 2018, and if all goes in the best possible way will be throwing myself a celebratory outing in September. Vegas anyone?
Pretty much that meeting was the cap of the day. We fought early rush hour(s) traffic back home and settled in. It is really great spending time with my brother. With me living here so long now I never really get to just dialog with him, so that has been really a bonus in all of this.