Author Archives: Becky

Friday was biopsy day

It was odd being the one in the chair meant for family members – rather than being the one in the hospital bed. Looking at my mother, I could vividly recall the feeling of warm blankets being stacked on my cold body as I awoke after my various procedures. The smells in the hospital also brought back memories. Memories of the many times that I have been the patient over the last four years. But this time, it isn’t me that is getting the biopsy. It isn’t me that is dealing with a new diagnosis of cancer – it is my mother.

Similar to my diagnosis, this came out of the blue. We did not expect it. And even when things were looking like it might be cancer, it certainly wasn’t kidney cancer. From what I’ve read, most kidney cancer is diagnosed as an incidental finding on an abdominal scan that is done for some other reason.

Mom’s biopsy didn’t quite go as planned. We arrived to find out that it was booked as ultrasound-guided – we were originally told it was to be CT guided. The first problem was that when mom went back, her blood pressure was too low. I have no idea what they did for it. But it caused a delay. Then when they tried with the ultra sound, they couldn’t get good images of the tumor, so they put her in line to do the biopsy via CT. Fortunately, this did not require rebooking. It delayed things by another 90 minutes, but she was able to get the biopsy done which was really important. After the biopsy she had to wait on bed rest for 3 hours before she could come home. It meant for a long day – starting at 10:30 and not ending until 5pm. It was a good thing we didn’t have anything else planned for the day.

Now we wait – we will see the oncologist for the first time on Monday, but we won’t have any new results that soon. I don’t know when the results will be in, but sometime within a week. Treatment cannot start until we know exactly what we are dealing with. For now, I’m happy that mom’s pain is mostly under control and she is doing a lot better. The pain meds have a benefit of having helped her appetite return, which in turn is helping with her energy levels.

Pain control and transport chairs

It is amazing the difference good pain control makes. Mom is now on a steroid and made an amazing transition. She went from being in unbearable pain to being able to move around a lot more steady on her feet and with a lot more energy. It is like she is suddenly a different person – or at least the person she was the last time I visited her. It is so nice to see her back to herself again.

The unfortunate aspect of this is that it is yet another sign that the cancer is in her bones – she also had hypercalcemia (too much calcium in her blood), which is also a sign of bone mets. We know the cancer is in her kidney and lungs, so being in the bones is not a huge surprise. The pain doctor said she would write a letter to the oncologist, which should help us get to the testing for bone mets sooner rather than later. I will follow up on that with the oncologist on Monday.

One of the things that was recommended was that we get a transport chair – a lightweight wheel chair that has small wheels. The transport chair allows whoever is bringing mom to push her in a wheelchair rather than mom using the walker. It also makes it a lot easier for mom to get in and out of the car. So we are very happy for it. She even went shopping yesterday with her sister – and between the transport chair and the electric carts at the larger stores they were able to do a bunch of shopping / chores. The transport chair will make it a lot easier to get to/from doctors appointments.

Love it, hate it, love it

Love it, hate it, love it. That is an expression that a friend told me about being the family expert on cancer. Because I’ve been through it, I’m the one that understanding what is happening. I’m the one that knows what questions to ask, and which doctor to ask. I’m also the one that can interpret some of the symptoms. I love that I am able to help, but hate the reason I’m able to help.

I am thankful that I have such great friends with metastatic disease. Friends that are not afraid to talk about their experiences with the disease, but also not afraid to talk about death. They have given me the practice I need to have those conversations – but not yet – it is too early to have those conversations. Right now I’m in full-blown caregiver mode.

I never thought of myself as a caregiver. My husband is the caregiver in the family. He was my rock throughout my treatment (throughout my life now really). I am surprising myself at that way I’m thinking now.

Those that know me from support group know that food is how I show love. I cook. I make healthy meals and bone broth – and chocolate – although I don’t have the stuff I need here to make chocolate. I might need to figure that one out at some point.

One interesting thing is that I see the echo of my initial experience in not wanting to do too much research on kidney cancer. At this point, without biopsy results there is just too much information. Unlike breast cancer, which really had three variables (ER, PR, and HER2), kidney cancer has a lot more. Those variables affect the types of treatment. I’m encouraged that targeted therapies are available for many types, and they are effective at improving quality of life for a time frame.

I did find this website Kidney Cancer Canada, which has some good information for newly diagnosed. For now, we are in that wait mode that feels like forever.

We did have a brief visit from the pain doc (actually the palliative nurse practitioner). What she prescribed last night did not work at all, but she has a different thing that we will try. I hope to get the prescription this morning. If it works, we’ll go out and do some shopping – mom has not been out to do her usual running around over the last week (feels like much longer than a week). I really hope we find something that reduces the pain!

Pain management

Yesterday we had the first home visit from the nurse. When I set it up, I was led to believe that the nurse could immediate help with pain management. Unfortunately, that wasn’t the case. The first visit was mostly paperwork. The nurse did put in a referral to the pain doctor – who is expected to do a home visit on Monday or Tuesday.

I realized that I need to be more proactive in ensuring that mom is taking regular pain medication. Since she doesn’t want to take Tylenol 3 (leads to constipation), we are trying different options of over-the-counter pain meds. I think we might have something that takes the edge off, at least until we get the stronger meds from the pain doctor. I just need to be vigilant about getting pain meds into her every 6 hours – at least until she is feeling well enough to manage that on her own.

This week most of our appointments are at the house – something that I am thankful for. The weather is frightful. We missed the first pass of freezing rain that hit Toronto, but we did not miss the second pass. We got ice pellets last night and they are still falling from the sky. I’m glad that I bought enough food to keep us for at least today, so no one needs to go out and drive in this.

Friday is a big day for appointments. We will get an orientation to the cancer centre in the morning and then they will biopsy the kidney tumour in the afternoon.

The waiting is the worst really, although the waiting doesn’t feel as stressful for me this time – maybe because it isn’t me that is sick, or maybe it is because I’ve gone through this with my own cancer, that I just know what to expect. I’ve talked many women through this time of waiting.

My other focus is food. I’m cooking. I’m trying to make sure that mom is eating and getting some nutrition from real food. I need to figure out how to get more fibre in the food, but that is especially a challenge with gluten-free food. The gluten-free foods that I cook tend to be high in protein, but the proteins are not necessarily high in fibre. Maybe I’ll look at something with beans.

There are better ways to say it

For those just joining me – I’m not talking about me in this post – rather I’m talking about what I am hearing regarding my mother’s health. Today we had an appointment with the urologist. He is the doctor that told my mother she had cancer. I wanted an appointment so that he could go over everything again while I was there – but also to answer a few questions. When you first hear the words “you have cancer” you don’t necessarily hear much afterwards, so I wanted to have the doctor go over it all again.

I didn’t quite like the way the doctor worded it – mostly in the presentation of RCC (Renal cell carcinoma) as grave. I didn’t like that. He said, we hope for the best but prepare for the worst. Yes, stage 4 RCC is terminal, but death is not imminent. If the treatments work, then there is a chance for some good quality living before death.

The doctor said that there were two broad types of cancer that will be determined from the biopsy – lymphoma or renal cell carcinoma. The chance of lymphoma is quite low – like 5% – and he thought that was the better of the outcomes because the lymphoma is treatable/curable (again, a choice of words that I don’t completely comprehend as the sense of curable doesn’t align with breast cancer – but it might with other cancers – being cancer free or in remission is not ‘cured’ IMHO). Anyways, if it is renal cell carcinoma then it is stage 4 and it is terminal.

One question I had was why a biopsy rather than removing the kidney? His comment was in part because there were tumors in the lungs, which means if it is RCC it is stage 4 and if it is lymphoma they treat that with chemo – so in either case, surgery is not the first choice of treatment.

 

I could tell he was not an oncologist, because he used the term chemo when talking about treatment that the oncologist would give. In all the reading I’ve done, it says that chemotherapy is not effective for kidney cancer (unless it is a rare sarcoma), but rather there are very effective immunotherapies and targeted therapies. These are often given via infusion, so people get them confused a lot – and it is often easier to just call everything chemotherapy – but they really aren’t the same thing so I really want for the doctors to be using the right terms.

The other thing I did today was to call the Community Care Access Center (CCAC). These same folks were an immense help when my dad was sick. Back then we wished we had called them sooner, so this time I was not going to wait. I had a great conversation with the intake team and they are sending a nurse over tomorrow to help assess mom’s pain levels and make recommendations to her primary care doctor for pain management. I think that when she is in less pain she will have a lot more energy. I remember just how draining pain can be!

I also asked how long it will take to get the biopsy results. The doctor said about 1 week. With the biopsy late on a Friday, we will probably end up with an oncology follow up the Monday a week later. I also asked what type of biopsy, and he said fine needle – seems like it is going to be CT guided. They will do some freezing but no anaesthesia.

We will have an initial oncology appointment next Monday – but they won’t have the biopsy results that quickly. The initial appointment will be a chance to get a better sense of what we are dealing with and what the treatment options might be given the different options. If nothing else, it is a chance to meet with the oncologist and get a little more familiar with the oncology setting.

It feels like I’ve been here for weeks – and yet it has only been two days. I’m tired – but that is in part jet lag, but also partly just tired.

I didn’t think I’d be learning the Canadian Cancer system like this

I knew that my mother was not doing well. She has lost a lot of weight and is very fatigued. She is also in a lot of pain.

I was already planning a short visit, since I was going to be in Canada for other business.

I got a phone call from her, while I was sitting in the lounge in Washington Dulles airport between flights – the doctor said kidney cancer with metastasis to lungs. We were shocked. I would not have been surprised to hear lung cancer, given her coughing and issues with the breathing – but I did not expect to hear kidney cancer. I know nothing about kidney cancer.

I think I’m still in shock – for this means me trying to find information and organize information.

I’m here with her now. I’m figuring out doctors appointments and trying to make sense of the information that we have. Stage 4 kidney cancer.

We saw the lung doctor today – the appointment was setup before we knew about the kidney – when we thought it was only the lungs. He said that lung cancer does not typically go to the kidneys, but kidney cancer does metastasize to the lungs. He did not advise a lung biospy at this time. It would not provide any new information that would change the course or treatment, and a biopsy of any kind is not a pleasant experience, and certainly not one in the lungs.

I asked the doctor if we could see the CT scan. He brought it up on a big screen and showed us the kidney first – how one was more than twice the size of the other. He then showed us the lungs and where the tumors where there – multiple tumors across both lungs. I also got a copy of the CT imaging report. It was worse than I thought.

We had a call from the oncologist office. I talked to them and moved the appointed up so that we could get a preliminary appointment the week after next. We also booked an additional appointment with the Urologist (who did the diagnosis), to go through everything again. This will let me ask a bunch of questions and get a better sense of what they are thinking and what additional tests need to be run.

I’m here. My feelings are pretty numb. I’m focusing on cooking – making sure there is good food in the house. I’m also tired. Jet lagged. Emotionally drained.

Please send well wishes via Facebook rather than calling. The phone is ringing off the hook, and we need to keep it clear for doctors appointments at this time. In about two weeks time, things should calm down a little – then mom would welcome calls and visits. Right now we are all still in shock.

PS: I check with mom before writing this post.

 

 

Dance like no one is watching

I was at a retreat last weekend (at Commonweal). One of the practices we did was embodiment. In those sessions, one of the things we did was move to music – one might call it dancing, but it is more like dancing like no one is watching, as the movements are about doing what feels good in your body.

I love to dance, and I realized that I was missing it. Not any formal dance, just moving to the music. The embodiment sessions helped to remind me that I can do this.

Now, as I work away on my dissertation, every half hour I take a 5 minute break. I’ve now started to play a song in that break and dance – by myself – moving my body like no one is watching. What is interesting, is that after the song ends I find myself smiling. I find myself with more energy, and I find myself eager to get back to work. It was exactly what I needed.

Now, I shall try to remember to keep that practice up. To dance because I love dancing, and I don’t need an audience to do it. I don’t need a group of people. I can do it in my living room by myself – and it will make me smile.

Feature image by Luna Jubilee – https://www.flickr.com/photos/lunajubilee/15217679294

Privilege and equity in healthcare

I shared the other day the idea the for the privileged equity feels like oppression.

It occurred to me that this is in part why I am scared at the idea of moving back to Canada and relying on the Canadian healthcare system. The Canadian system is a good one. It is mostly equitable. It suffers from the same issues as most, in that people in rural areas don’t get as good care as those who live closer to major medical centres. That issue exists in the US too.

But, at the moment, I’m extremely privileged when it comes to healthcare. I have good insurance. For the most part, I have access to excellent doctors, and I can afford my medicines. I have learned to use my privilege to get good healthcare.

I feel like moving back to Canada, I won’t get as good of care. I likely won’t have access to a PCP that I don’t have to wait for, but also one that I can ask unlimited questions in a single visit. I likely won’t get to choose my specialists. Actually, as an empowered patient, I know that the key to getting good healthcare in Canada is finding the right PCP (Family Doctor). I would need to find one that would be willing to work with me on my healthcare, rather than one that expects me to simply “comply”. A PCP that would allow me to choose which specialists I’m referred to. I cannot help but think that I would be a nightmare patient for any Canadian Family Doctor, and that is part of what scares me.

I realize now that a large part of my fear of going back to Canada is that it means a loss in the privilege that I currently have. It means that I will become equal to anyone else in the system, and that is a loss to me.

This is causing me to really question my values. I struggle because it is easy to say that I value equity, but when it comes to my healthcare, I am thankful that I am currently in a place of privilege – and it is something that I don’t want to let go of. I am afraid of losing the privilege. I am afraid that it will lead to suffering – and yet – I think that everyone is entitled to good healthcare and that means that I need to let go of the privilege that I have in order to allow for equality. I’m not willing to let go of it just yet …

Gluten Free Orange tea-cake recipe (Vitamix version)

I’ve been asked for this recipe, so I thought I’d share it here. It is based off the recipe in Nancy Cain’s Against the Grain cookbook, with a few modifications.

Ingredients:

  • 2 oranges (I use organic navel oranges).;
  • 1 cup powdered sugar
  • 1/4 cup coconut oil
  • 6 large eggs
  • 1/2 cup (56g) of coconut flour
  • 1 teaspoon of baking powder

Directions:

  1. Preheat over to 350 degrees F.
  2. Scrub clean the outside of the oranges.
  3. Grate the rind of the oranges directly into the blender.
  4. Peel the oranges and then slice them into one inch chunks, ensuring there are no seeds, and put directly in blender.
  5. Add to blender powdered sugar, coconut oil (make liquid, so you might need to heat it first), eggs, and coconut flour.
  6. Mix until well bended (usually less than a minute in the Vitamix, might be longer in less powerful blender).
  7. Wait 5 minutes (this allows the coconut flour to absorb liquid and it a critical step).
  8. Add baking powder to mix and blend again until mixed (about 10-20 seconds).
  9. Poor into baking cups. I use silicon muffin tins, but last time I found they stuck a little so next time I’ll use liners.
  10. Bake for 25-35 minutes – this will depend on how big your tins are. When done they should spring when pressed and a toothpick should come out clean.
  11. Let cool for at least 10 minutes before removing from pan (if you didn’t use liners).
  12. Refrigerate.

These are best served cold, straight from the fridge. They are OK warm, but the intense orange flavour comes out much better when refrigerated.

At some point I’m going to experiment with Meyer lemons.

Self-awareness as health literacy

I was walking with my friend Lori today and among the many things we chatted about, one of them was health literacy – the topic for my PhD dissertation. I had talked a bit about how health literacy isn’t just a skill but rather it is a practice. I read an article by Uta Papen that talked about health literacy as social practice.

The article mentions a different frame of reference for defining health literacy – specifically:

The study was grounded in a view of health literacy as social practice. Accordingly, we talked about health literacy ‘practices’ rather than health literacy ‘skills’. Setting aside the notion of skills, we were able to explore what people do with reading and writing rather than to ‘assess’ how good (or bad) they are at what they are doing. This is not to say, however, that we were not interested in people’s abilities. But we did not define these as narrow skills. Rather we conceptualised them as context-bound and changing competencies, some of which, as I will show below, were not located in individuals but in groups and social networks. (Papen, 2009, p.21-22).

One thing that came up in our conversation was the importance of self-awareness and body-awareness as a health literacy. Both Lori and I are very aware of our bodies – sometimes this can be rather uncanny. Lori has felt her cancer growing (she has metastatic breast cancer), and has noticed tumors growing before they show up on scans. She is highly aware of when things are not right. This often reminds me of the multiple intelligences theory – and how one of the intelligences surrounds body awareness, but I don’t completely buy it, as I do think that to at least some extent this awareness can be learned.

Our discussion turned towards health literacy, and I found myself asking, is this sense of body awareness or self-awareness a health literacy? Is this something that patients (or people in general) should consider developing – a broader awareness of what is happening within their bodies, but also learning how to express those changes in language that others understand?

And now that gets me thinking about communications issues between patients and doctors (or other healthcare providers). I can recall several times when I have described what I am feeling in a way that has been misinterpretted by healthcare practitioners. Or when I hear them use a term and I think I know what it means, and so I use it to describe what is happening to me, and that description then leads us down a wrong path … so that maybe my awareness was actually a problem.

Hmmm… I’m not sure anymore.

Should people be more aware of what is happening in their bodies? Or is perhaps, willful ignorance also a strategy?

In that very same article, I also wrote myself a note that ‘Passivity could be an intentional expression of self advocacy‘. I’m pretty sure I’ve talked about this idea before. If you are intentionally abdicating decision making, then that can be seen as self-advocacy, as it is in an intentional choice. Abdicating decision making is only a problem when it is not intentional.

What is amusing is that this blog post has meandered from one thought to another, loosely connected and yet somewhat disconnected. This is exactly how my conversations with Lori go … we walk and we talk … we have some good ideas, and not so good ideas … either way, it is a great way to spend an afternoon.