I am up at the crack of dawn to go for my surgery. It may be quiet around here unless I feel like typing with my left hand.
Tomorrow is my surgery for the carpal tunnel syndrome in my right-hand tomorrow. While I am excited to be finally getting my surgery1, I am concerned about what the other side will look like not having use of my right hand for at least a couple of days. Let’s just say when it comes to personal hygiene, I am a little set in my ways. Part of this has to do with my ‘body habitus’ which makes some things a little more difficult shall we say.2 Going without a shower for 2 days will also be very trying for me. I love my showers!
Big thanks go out to Heather for staying over to wake up at the butt crack of dawn to take me to Eagle Ridge for my surgery!
I have still not fully processed yesterday’s CT results. While things have changed, they have still, very much stayed the same. I still have cancer, I am still palliative, my cancer will still kill me. In the short term many things have changed1
I will no longer have 2 weekly appointments at the hospital. No more Monday blood work and Tuesday chemo. In many ways routines are how we define our lives even when those routines are comprised of unpleasant activities. Right now, I am in a state of limbo for a couple of days until my hand surgery. I am sure I will develop some kind of new routine until October 10 when I next see The Oncologist™. If we decide to hold off on more chemo at that point, I may revisit my life coach plans. It may be scaled back, but I know myself – I will need something to do.
I may also look at some other kind of volunteer work. I would love to sit on a city committee dealing with homelessness or help a non-profit with a project. I might also like to some consulting. I will not, however, go on another board of directors.
So lots to think about and decisions to be made. Perhaps some positive changes on the horizon.
- I am operating on the assumption that I am taking a break chemo. This could be wrong as The Oncologist™ may make a different choice. ↩︎
We got the CT results and they were very good. I’ve only got 1 spot in my lung1, the tumour in my breast has shrunk considerably as has the one in my lymph node.
I am chemo for my hand surgery. I have a follow up with The Oncologist™ on October 16 where we will make a decision. These are the choices:
- Do more Taxol. We know my cancer responds to it. However there were side effects that were quite difficult2.
- Try a new chemo.
- Do nothing for a bit and see what the cancer does.
He says he’ll make the call on October 16. So, I have been set free until then.
This will take a bit to sink in. I still have/will always have cancer. It’s become a part of me. It affects every part of my life. I feel like I am living my life in blocks. I can’t plan the next block until the current block is over. For someone like me, who likes certainty this is very difficult.
We are going to focus the next couple of weeks on feeling better, maybe getting out more and not to see doctors! And perhaps doing Thanksgiving after all.
- Down from either 30 or 15 – the wording can be read both ways from the original CT. ↩︎
- I am still dealing with some of them. ↩︎
Lots to tell you from over the last several days so it’s going to be a list kind of day because I am not up for complete paragraphs that transition etc.1
- I am freaking the fuck out about the CT scan results. I had it last Thursday and I will not get the results until tomorrow. I was distracted on Saturday by our Thank you part for those who helped us over the summer but I have gone downhill since then. I am imagining all sorts of horrible scenarios and what I would do. This is the only way my brain copes in the face of uncertainty.
- There are still days that I cannot believe that I have cancer and that I am going to die. Yet, as soon as I check in with my body I know it to be true. Whether it’s the port, the really dry skin on my face that I can’t seem to fix, the fatigue, and the anxiety, I could almost convince myself that I am ok. Even though I am a couple of weeks out of chemo, I am still having trouble keeping food down (especially dinner) and I don’t have much of an appetite most of the time.2
- I am still very angry about having stage 4 metastatic breast cancer. This was supposed to be my time to do what I wanted for the first time in my life. This was not what I wanted. I keep looking for what I am supposed to learn here and how I can beat it but I am coming up empty. All I know is that to fight it is a lot of suffering that I will have to endure and I am not sure how much more I am up for.3
- One of my favourite sayings about all the ever changing health information is that it really is all a crapshoot. I just didn’t think it would crap on me. I hadn’t prepared for that eventuality. I still think that medical science doesn’t have all the answers.4 I am not sure if we can ascribe blame to people who get sick. Certainly there are those in our society who do think if a fat person gets sick it’s their fault but thin people get sick too.5
- I have included a couple pictures of Lydia being subjected to Stevie love! Stevie love is intense.
So to sum up, I am stressed, angry and still sick. I will try to let everyone know tomorrow the results of the scan.
- Sorry Rosie. ↩︎
- My main hunger cue remains weak and dizzy. ↩︎
- Then I look at the women on the metastatic support group I am in who have done countless rounds of chemo and radiation and are still here 5 years or more from now. Is that going to be me, one round at a time? I don’t know. ↩︎
- In fact, I think they have very few. ↩︎
- Like my step-father, who was the 2nd youngest of 4 brothers. He died first and considerably for the others. The oldest died recently and the youngest is still going. But my step-dad was super healthy. Much more so than any of his brothers. He backpacked, cross-country skied and managed his weight and he got leukaemia. ↩︎
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.
- Through the Canadian Cancer Society ↩︎