You may have noticed things a little quieter around these parts. We have a house guest! Lydia Knox of 3 Dog Art Studio is visiting!1 You have seen me post many of her paintings on Facebook. She also brought a couple of smaller pieces available for sale if anyone is interested in making the trek out to The Swamp to have a look.
It’s been about 10 days since I last had chemo and I kind of miss the chemo nurses. I went for my CT scan2 yesterday. They had to access my port to put in the dye.3 I had to go to medical day care to have one of the RNs there access it for the CT.
Medical Day Care are definitely the poor cousins in the ambulatory treatment centre. I sat in one of the chairs and it made this huge clunk. I was mortified. Everyone laughed, apparently this is common. Then the nurse, who was accessing my port, did not have enough light either that or she needed glasses. I finally pulled out my iPhone flashlight so she could see. My vote is glasses.
The scan itself went well and quickly. My theory is that if the scan is over quickly without a lot of futzing it usually means it’s positive. So far, my theory has held. Unfortunately, the The Oncologist™ is making me wait until Tuesday to get the results. I am quite annoyed by this as he has given me phone results twice before.4
I am making butter chicken today!! I don’t do it often anymore because it’s so labour intensive but it’s one of Lydia’s favourites. We all love it too!
PS: Posting may be sparse until mid-next week.
We have known each other for over 30 years. She even knew me when I smoked!!!! ↩︎
This scan will tell us if the chemo worked to shrink any of the tumours in my body. ↩︎
If you have never had a CT scan with dye it’s quite the trip. When they put it in, your whole body gets warm in a pleasant kind of way. ↩︎
His excuse, err, reason, was that I got too upset the last time. In my defence, he did tell me the results were not good. But I didn’t get hysterical necessitating a call to 911 or keep him on the phone longer. I resent having to wait when he knows and could tell me. ↩︎
Today, I went to the BC Cancer Agency’s1 pain clinic. I was not really expecting much as they had shown reluctance in taking me on because my pain was not caused by my cancer. However, chemotherapy had exacerbated my pain. I really thought I would be told that the medication I had should be sufficient.
First, I talked to the pharmacist and we went through all my meds. She was great, asking how the pain meds, in particular, worked for me. Then Dr. Tambor2 came in. I have dubbed her: The Most Amazing Pain Doctor™. And wow, she blew me away. We talked about how I experienced pain, where it was located, how well the morphine worked for me, I was allowed to finish a sentence. At one point, I burst into tears because I was being heard by a doctor for what felt like the first time ever. The Most Amazing Pain Doctor™, was going to help me.
She acknowledged that I knew my body and had good insight into my pain. We talked about what other substances I use to control pain ranging from cannabis to cocaine. She agreed that addiction is not an issue for me.
The Most Amazing Pain Doctor™, decided that we were going to change up my pain control regime. I am going to start on hydromorphone. While it is also a form of morphine, it is different enough that it’s not immediately recognized by the pain receptors in the brain. I go back in 2 weeks and we will re-assess the situation then.
I cannot convey how grateful I am to have been able to go to The Most Amazing Pain Doctor™. After 13 years with ulcerative colitis and being in the medical system, a doctor like Dr. Tambor is very, very rare.
It’s been one of those days. Oswald managed to blow a couple of his stitches shaking his head. We have temporarily glued them shut with Krazy Glue.1 I am not really sure we should have done it on the dog but our options were limited and we were not going to animal emergency, if at all possible.2 Although he came out of this surgery much easier than the last one, we have had several complications.
I just spent over 90 minutes ordering groceries online. Why is it so difficult? Why can’t they make it a more streamlined process. It seriously is probably quicker to go to the store.
Tomorrow we are going to go to the store where I got my chair and get some lessons on getting it in and out of the truck before we pick Lydia up at the airport! We’ve done all the meal planning and the groceries will be delivered tomorrow.
We are thinking of doing something different for our thank you party. We are looking into catering or getting some restaurant food. We are all really tired and would rather spend time with people than cooking and cleaning up.
The stuff works really well for closing wounds that need stitches. I think my step-dad did this with any cut he ever got. ↩︎
If it pops open again we will take him tonight. ↩︎
September is my favourite month of the year. The hot and sweaty temperatures of mid-summer are mostly gone and everything just feels a little cooler. I especially the beginning of September when things cool off dramatically and the weather becomes less predictable often punctuated by dramatic storms, and deluges of rain. The remainder of the month is generally very gentle with little rain, and temperatures in the high teens. Very pleasant.
This year however, I find that I am wishing the month away. This is a big month for me medically. I have my 3-month CT scan on the 20th. I won’t get the results until the 25th because the The Oncologist™ has deemed that when he gave me results on the phone the last time I got too upset. So I have to go in to get them. Then on the 28th, I have my hand surgery.
Other things will make the rest of September busy as well. We have Lydia coming to visit from Toronto. I can’t wait. We will have fun. The weather looks decent and I can get out and do things with everyone instead of staying home. I do have to keep my expectations reasonable and respect my fatigue levels. But I am hoping for at least a trip to the sea wall with a couple of dogs. We may also try to go to another dog park where I can see the dogs in action. This will be fabulous! We are also having our thank you party on the 22nd for everyone who helped us out this summer. This should be fun!
I had my counselling appointment at the BC Cancer Agency in Surrey today. I really didn’t get much out of it, unfortunately. When I made the appointment, I was very angry and upset all the time and by the time it came around, I was doing alright. I did find out about other resources for caregivers and others involved with cancer care.1
The triage nurse I spoke to the other day at the Pain and Symptom Management called back today to let me know that they would see me. So I have an appointment next week with them. This is very good news as I did not expect that they would agree to see me given what she had said the other day. I hope I can get some relief.
Poor Oswald’s incision sites are infected. So he now has antibiotic ointment and pills. The incisions are quite long. We noticed the infection last night. He is such a trooper.
Oswald had his skin resection surgery to improve his tracheostomy. Because he lost 1/5th of his body weight after the last surgery1 the skin around the site was loose and impeded his breathing in certain positions. Eating out of a bowl was difficult so was hoovering anything off the floor. He is doing so well since the skin resection on Tuesday. He came out of it like a trooper. He was eating and very active. His tracheostomy is very open now.
I just had a triage call with one of the nurses at the pain clinic at the BC Cancer Agency in Surrey. Apparently, because my pain is not directly caused by my cancer, I may not be eligible to be seen by them. This siloing2 of cancer care in BC is really bad for patient care. I am a cancer patient, I am in pain and you won’t treat me because the condition predates my cancer? The chemotherapy side effects increased my pain by about 50%. Here’s hoping that counts for something.
On to some good news. I picked up my power chair yesterday. I was hoping to get out in it today but I am too tired. This really sucks. The good news is that I can move the ramps and then I just need to figure out how to get it up and down the ramps myself. We neglected to take a picture of me in it yesterday.
I am very much looking forward to my chemo break. Although we aren’t really there yet as I had a treatment on Tuesday so it will take a couple of days to work it’s way through my system.
I guess one needs oxygen to burn calories because we could not slim that boy down before the first surgery. ↩︎
All of the siloing across government is bad for all of us. ↩︎
Here are my reflections on my first round of chemo:1
It was harder than I ever thought it could be. I never been so fatigued in my entire life. I have never felt fatigue like this and I have been through a lot of medical shit.2
It was easier than I thought it would be. I didn’t suffer much nausea. I mostly lost my hunger cues.3 My ability to eat was compromised in other ways like just not being able to at all.
The worst side effect was the dryness in my nose. It would scab and bleed a lot.
The chemo got easier as it went along. I think the worst weeks were like 4-7. I have been feeling a little stronger the last couple of weeks.
While I love my port and I am so grateful for it, my adhesive allergy has made it look like a war zone. I seem to have a scab 2 inches square.4
I thought I would lose a significant amount of weight. While I did lose some, I wouldn’t call it significant.
The fatigue coupled with my hip and lower back issues have made it really difficult for me to walk any distance. I cannot wait for my power wheelchair. I am also grateful that I can afford such a luxury.
I have not had too many side effects – mostly it’s been diarrhea and neuropathy in my hand with carpal tunnel. My thumb and first 2 fingers are quite numb.5 I cannot wait to crochet again.
I have been honoured and blessed by all the people who have showed up to help us over the last 3 months. I love you all.
I am now on a break for a bit. I will have my carpal tunnel surgery on September 28th. On the 25th, I will get the results of my CT scan and we will make plans for the next round of chemo which will likely start around October 9th. All of this is tentative though until we know what the CT scan says.
The Oncologist™ seems to be mellowing a bit. I thought he would veto my surgery as it was 4 days earlier than he wanted but he didn’t. We don’t seem to disagree as much as we had before which I think is me getting used to him and the BC Cancer Agency system which is quite involved.
Overall, I am feeling more optimistic than I have since the chemo started. I feel stronger and my breathing has improved quite a bit. I am really hoping that those tumours have shrunk. I am also very excited about my power chair. It will allow me to get out more often and with less pain. At least there is a little hope to hang on to here.
PS: I found my runners, for those of you keeping track!
Chemo does weird things to your body. I remember when I first started Taxol, a friend of mine told me that the food she ate after last treatment was a food she would never be able to eat again because it would make her sick.1 Even though I am not at my last treatment yet2, I think my food has shown itself early. It appears to be pizza. I had it about a month ago and I threw it up. I had it last night and I threw it up again. So no more pizza for me for a long, long time. It’s too bad because we have some of the best pizza ever here in Maple Ridge.
Seeing as we are talking side effects, I actually have done very well. I have some nausea but nothing Gravol can’t handle. I have very bad diarrhea a lot of the time which can be extremely painful. My hand with the carpal tunnel syndrome has gotten worse. My thumb and index finger are numb most of the time. I can’t wait for my surgery mid-October. I will likely re-start chemo the following week. So, I get a 3-week chemo break. I hope I am not exhausted the whole time. I expect the first week to be normal post-chemo but then I am hoping to have a little more energy.
I also made another decision to try to improve my quality of life. For the most part, I am stuck at home as I can’t walk for due to advanced degenerative arthropathy of the left hip and lower lumbar degenerative disc disease. The pressure my bowel further exerts makes walking and standing very difficult. There are times when walking to one area of the house to another is really hard. So, I have purchased a power wheelchair. I will get it some time next week. I am looking forward to getting out of the house for something other than medical appointments.