I have cellulitis and I am going to hospital everyday. As soon as this is dealt with hopefully things will be back to normal around here.
Me getting shit done.
Like most women, I know when I have a bladder infection. I think most women are very well acquainted with our bladders. We know when something is off. And we know it’s most likely an infection. I have yet to be wrong about having a bladder infection. I don’t get them often – maybe once a year which is why I notice them so quickly.
Yesterday, I told The Oncologist™ that I had a bladder infection and I asked for antibiotics. He didn’t even bother to ask about my systems or how I knew I had an infection.1 He insisted on a urine test. You would think there would be some level of concern there as it’s not like I have a lot to fight with when it comes to infections. I am on chemo and immunocompromised. He knows this yet he was going to send me to a public lab. He commented that he sends me to one every week. I laughed and told him that he didn’t. Instead, I came in where one of the the Fabulous, Competent and Kind Nurses™ took the blood from my port.
We were able to figure out how to do it in the chemo lab thanks to the efforts of the Fabulous, Competent and Kind Nurses™2 Going to a public lab, would have exposed me to all sorts of germs and viruses.3 We did it there, sent it up the ‘tube’4, and then I was able to view the results online at about 3 AM.5 The results definitely indicate that I have a bladder infection. Now, I have to try to get a hold of The Oncologist™ to see if he will call in a prescription for antibiotics. Wish me luck but I am not holding my breath.
I still hadn’t a flu shot. So one of the the Fabulous, Competent and Kind Nurses™ suggested I asked The Oncologist™ for one. He was perplexed – he said he’d never written one before and that he would have to check with one of the nurses. RIDICULOUS. At least now he knows he can order a flu shot. I am sure it will be revolutionary for his practice!
This brings me to another point – why don’t some doctors believe women. He completely dismissed me and my bladder infection. Not stopping to think that on chemo6 a bladder infection could quickly morph into another kind of infection. So, I now get the dubious pleasure of monitoring my temperature to make sure that doesn’t happen. I have no idea why he is a doctor, let alone an oncologist, when he seems to care so little for his patients. Well, at least this particular patient anyway.
1 I think that doctors who do not bother to take a history or find out why you think you have something like a bladder infection are extremely lazy. It’s not like I ascribe every ache, pain bit of nausea to chemo. I know my body and I bloody well know when I have a bladder infection.
2 This is my collective name for all the nurses in the chemo room at Ridge Meadows Hospital.
3 In January of 2018, I got so sick it lasted 6 weeks.
4 The direct connection to the lab.
5 Just an aside, those of us who live in BC and Ontario can get access to our lab results in real time. Most of the time, I will see the results before my doctor does. This is such an amazing service.
6 I had .8 neutrophils which are the cells that eat up infection. After yesterday’s treatment, I will have fewer.
I had chemo today. I am exhausted. I was up in the middle of the night, very hungry and couldn’t sleep. So I got up and ate something which meant I lost out on some sleep. So I am very tired.
Apparently, now that I am on ‘maintenance’ chemo it’s 3 weeks on, 1 week off. Next week is my off week and just happens to be the week we are going away.This is good. As usual though nothing was communicated with me so I started asking why I didn’t have an appointment next week. Ya, you’d think The Oncologist™ would have told me.
I went out to get blood work done at the hospital. I also decided to get my knee x-rayed as it hasn’t healed and there is still a lot of fluid sitting on the knee cap itself. My theory that it was just a bad bone bruise is not holding up. Hopefully, The Oncologist™ will tell me what’s going on so I don’t have to go and see my family doctor.
I had to wait a long time for the x-ray. So here I am:
Just saw my blood work. I may not be getting chemo tomorrow.
We need a new refrigerator desperately. The drawers and shelves in ours have died and it will cost more to replace them than a new low-end fridge will cost. So, off we went. We got a good fridge. There is no point in buying something cheap and disposable. This one should last a long time.
We also went to London Drugs1. We needed to replace Deb’s iPad, so I got a new one and she will get my old one. They now have a 12-inch iPad! I couldn’t imagine holding that thing up for any amount of time.
I got to practice lots in my chair which was fun once I figured some things out. Driving a power wheelchair is much like driving a car. You need to know where your wheels are and you need to look where you want to go. Get those 2 things down and you are good to go. I was having fun in the London Drugs parking lot while Deb set up the ramps to put it back in the truck. It’s hard to believe, but someone actually drove over one of the ramps! It’s not like they stick out that far.
I have to say that getting out today to do normal things made me feel a lot more like a human than I have in weeks. It’s nice to go somewhere other than a doctor’s office or hospital.
First egg nog latte of the season!
1 Where all good things come from.
One thing I think people with palliative cancer have in common is the ability to experience almost every single emotion in one day. There are days that I cry, get angry, laugh, experience depression and anxiety1. In the midst of this emotional stew, we are also faced with making, often life and death decisions, while sitting in an emotional stew.
I have spent most of my life living in my head. It’s my favourite place. It’s where things make sense and I have control. I do not do well in the realm of emotions. When I first found out I had metastatic breast cancer, I cried for 45 days. I think I cried every tear I had not cried my entire life. There is also a huge amount of information to take in. I couldn’t deal with it and I simply deferred to the doctors. I looked nothing up on the internet2.
I have not yet gained control over the tears. I don’t cry everyday now but many days I am close to tears.3 Sadly, I don’t have enough any answers. I wish I did for me and everyone else. All I can do is try to get through each day and try to find some joy or at least something that makes me happy.
1 Ok, that’s everyday.
2 This was a huge surprise to me and my family. I am the information queen – it’s the first place I go! I still haven’t looked.
3 These are generally days when I have heard bad news and I am trying to take it on and make a decision.
I got some new information yesterday from a friend of a friend who is a Nurse Practitioner in Oncology in Calgary.1 She explained things in such a way that I finally understood why everyone is so against me having a mastectomy. I am still ruminating and looking at a number of things. Once I have it figured it out, I will keep you all posted.
Seeing as it is NaBloPoMo,2 I am going to my best to post everyday in November, wish me luck.
1 I have not yet anointed her with a blog nickname.
2 The official site seems to be gone but basically the idea is that you post a blog every day of November. It grew of of National Novel writing Month.
It is no secret that I have never had a good relationship with The Oncologist™. I have found him to be an arrogant gatekeeper who will take whatever power his patients will let him have. He refused to allow me to have my carpal tunnel surgery and he kept saying that I wasn’t a surgical candidate in terms of a mastectomy. I want a mastectomy as the only part of my cancer to come roaring back after 12 treatments of Taxol was the inflammatory breast cancer. All of the other cancer in my body1 was greatly reduced and a 3-month break from chemo was proposed. Within 2 weeks, the the inflammatory breast piece had started to come back. Fast forward 3 weeks and I am back on chemo.
I met with The Oncologist™ a week before I was to start to chemo again. I raised the issue of a mastectomy again and again he said I was not a candidate2 because I have metastatic disease and I am fat. My position is that if it were not for the breast, I would still be off chemo and that if my life was going to be constantly on chemo that I was filling out the MAiD3 paperwork. We left it there.
Fast-forward a week and I am starting chemo. I didn’t have an appointment with The Oncologist™ as I had just seen him the week before. The nurses tell me that I have to have the pre-meds again including dexamethasone. I had a really hard time on dexamethasone the last time and I told The Oncologist™ that I never wanted to take that drug again. I was not given a choice. I spent the next week with crying, with severe suicidal ideation.4 I was livid. I decided that I had to talk to him about this issue and others. I took Angelina with me for support and to advocate should I start to cry and not be able to say what I needed to say. I am proud to say that I was able to do this without losing it.5 So here is the conversation as best as I can remember it:
Me: I am wondering why you didn’t tell me that I would have be given dexamethasone at last week’s treatment. As you know, we have talked a fair bit about dexamethasone and that I have a really hard time with it. I spent the week in tears with suicidal ideation.
The Oncologist™: You had it with every Taxol treatment because you had a reaction to the Taxol.
Me: I never had a reaction to the Taxol.
(He gets up very quickly to get my chart and starts madly flipping through it. When he can’t find what he’s looking for he goes out to one of the nurses who shows him the page he’s looking for in the chart.)
The Oncologist™: Ok, it looks like you didn’t have a reaction to the Taxol. We just give it is a matter of protocol when we start someone on Taxol.
Me: But I was not a new start on Taxol. Besides we had discussed my desire not to ever take dexamethasone again after the last time. In fact, you said that if I wouldn’t take dexamethasone then I was tying your hands.
The Oncologist™: Well, you are tying my hands.
Me: So why did I get it then?
The Oncologist™: I didn’t review it more carefully, I am sorry you got the dexamethasone.
I then went on to discuss our interpersonal relationship which is horrible to say the least. I told him that I had the sense he didn’t like me and that this is impacting our clinical relationship. I pointed how when he leaves for the day he says goodbye to all the patients and that he didn’t even acknowledge my presence was quite disheartening. He asked if I wanted to change oncologists, I said no and that I thought, after this discussion, hopefully we will be able to work together more effectively going forward.
We then went around surgery and after we worked through all of his excuses as to why I shouldn’t have surgery it all came down to he doesn’t like surgery. Lovely.
1 That they can see. They can’t see all the cancer cells.
2 This makes no sense to me as if this is the cancer that is coming back why not remove the breast?
3 MAiD=Medical Assistance in Death. The new legislation passed in Canada that allows for patients with terminal diseases to end their lives with the assistance of a medical professional.
4 I kept thinking I could just go to the street and find fentanyl and it would be over.
5 I am crediting this to one of the nurses and the steps she was willing to take to make sure I didn’t have to take dexamethasone again.
As of last week, I started back on chemo to try to address the inflammatory breast cancer in my right breast. It came back very quickly off treatment.1 I showed up for my appointment, expecting to get taxol. It was then I was informed, I would have to do the pre-med again – dexamethasone and Benadryl. I complained to the nurses but they said it was mandatory. I went ahead it with it thinking it wouldn’t be too bad and that I would address it The Oncologist™ this week.
Well, I couldn’t have been more wrong. The drug affected me worse than it ever has before. It seems that each time I take it, my reaction to it’s get worse. I spent last week severely depressed, crying, with suicidal ideation. I am clearly having an adverse reaction to this medication. I guess we shall see what happens tomorrow.
1 It came back in 2 weeks.