Great Cancer Fatigue Video

I was wandering around the cancerconnection.ca site today and one of the administrators had listed this video about cancer fatigue. I would normally have just clicked past it, not wanting to admit to, or have to commit to any changes they may suggest. But I did watch it and thoroughly enjoyed it! I know…I was shocked too!

If you find yourself dealing with cancer fatigue or just wonder what in the world I am talking about give this a view!

 

 

 

Another Transition/ Retirement

https://www.higheredjobs.com/HigherEdCareers/interviews.cfm?ID=709If I had been teaching through the 2017-18 school year, today would have been my last day of work before summer. I wasn’t teaching though, so it is just another day. Or is it?

Yesterday I attended the annual staff luncheon at the school. We order in mostly unhealthy foods and a cake. After the lunch, we all move down to the theatre for some presentations like skits and songs in honour of the retirees, gifts, and goodbyes for those who don’t know yet if they will be teaching next year due to short-term contracts or who are moving to a new teaching position. Yesterday was the same as always, but this year I was one of the people retiring.

My retirement is a little different than the others because it was my Salary Continuation company who decided I was retiring. When it became clear that I would not be returning to work, they required that I put in for the disability form of the teachers’ pension plan. Guess what that meant! Yes, indeed, forms to fill in, doctor’s records to gather, and then waiting for someone somewhere to decide my fate. Seven days ago I got a letter saying I was approved, the next day I got a call from the district to come for forms. We filled the forms out in the office and…poof…I was a retiree!

My retiring colleagues, if they chose to let folks know ahead, have had a few months of celebrations at various levels. They also have been clearing out their classrooms, which I did last year. It was nice to visit yesterday with my colleagues, some of whom I have known for up to 28 years. It was fun to listen to songs and skits about some of my fellow retirees! It was amazing to participate in the receiving line and get handshakes or hugs from everyone and to hear congratulations.

So is this really a transition for me? After all, I have been at home/not working for most of two school years. In some ways, it is no transition. September without meeting and learning names of up to 120 new students, done that! Sleeping in most days until I want to get up, done that! Able to travel when I want and am able, done that! But it does feel a little different today. I know that when I meet someone I can say that I am a retired teacher, rather than telling them that it is complicated.

None of us know when we will die, though with a stage 4 cancer diagnosis it is likely sooner rather than later. We can all celebrate each milestone we reach and decide how they will refocus our view of life. I have many good memories of all those years of teaching which are easier to think about with things settled.  My focus is fully ahead, what milestone will be next?

Hospital Mornings

Hi all, I thought I would take you with me on my adventures today.

8:15 I drove my daughter to work downtown.

8:35 I drove to the hospital. I always drive past the main doors so that I can see the parking lot and scope out available spots. Last week my back was hurting so much that I didn’t know if I would be able to reach out the window to push the button and get the ticket. Thanks to physio, this was not an issue today.

8:40 I checked in to oncology on the third floor. Today we were asked to do a survey. Some of the questions were a bit odd, as on most surveys.

8:45 A nurse called me and we went into the treatment room. There weren’t many people around yet so I had my choice of chairs.

The nurse checked my birthdate and my arm band and then cleaned the skin around my port. She accessed the port (put a needle in) and took three vials of blood for testing. I was doing the survey and then saw something pink and thought it was my blood…a little shocked I asked and then realized that it was the colour coded band at the top of the vial.

When that was done, I was all set to leave but had to have my weight done. Rah! They track it in kilos but that doesn’t work for me. I am up 7 pounds since last month! It is time to do something about that!

9:00 I checked in on the second floor for my physio appointment. My physiotherapist is great. She was happy to see my back better and laughed when I said that now my left shoulder blade was aching.

She did this cool (pardon the pun) light massage with an ice cube on a stick. It felt great! After it was all cooled she did a little manipulation to get the muscles released. Lastly, I had a lovely time with heat on my neck.

9:40 Back in oncology on the third floor, I settled in to wait for my 10:40 appointment with my medical oncologist. One of the volunteers who had asked if I wanted tea when I arrived for blood work asked again so I had a lovely cup of tea.

Time to play some Pokemon…

10:40 I was called by the LPN who works with the oncologist. She had someone training with her. We went into an examination room and I had vitals done. Tom joined us after having dropped a daughter at the airport.

We went through the sheet of checks re side effects etc. After that she asked me to change into a gown. I asked if it should open in the front or the back and was surprised to hear that they had new female-friendly gowns that actually cross over to cover the chest. I guess it was quite a struggle to get them and it was well worth it!

The doctor and a medical student came in with my chart. She started to talk and then was distracted by my Dr Who/Starry Night sneakers. “We have the results–I love those shoes–I’m so sorry!” She was embarrassed, but I thought it was great!

So, what was the news? My recent bone scan showed no new spots and some improvement in the worst new area and the original met in my rib. So the drugs are indeed working. Yay! I will continue on the lower dose of Ibrance, and regular dose of Letrozole. Blood tests every 4 weeks and oncologist appointments every 3 months along with Zometa infusions.

11:15 The nurse who did my blood work came to get me for my Zometa infusion. All the chairs in the treatment room were full so we got to use a private room with a choice of a nice recliner or a bed and a moderately comfy chair for Tom. They used the line from earlier and soon I was getting saline drip. A couple minutes later the treatment began.

Just as that was happening, one of the admin assistants came in with my appointments for the next three months. They are so organized!

Back to Pokemon for a bit…

11:30 The infusion was finished and I was on saline flush. The volunteer came by with sandwiches and cookies. I took an egg salad on whole wheat and a pack of Social Teas. I split the sandwich with Tom. Then the nurse came in and unhooked me and we were off.

11:45 On the way out, we made the ‘manditory’ stop in the Gift Shop. There were some cute tops and purses as well as other cool things as usual. I managed to get away before spending money!

12:00 I was pulling out of the parking lot, showing my pass to security, and on my way home.

Dress Down Friday/ Living the Dream

bitmoji-20180329115557If you had worked with me over the last ten years or so, you would know that I absolutely love casual days, or dress down Fridays!  Almost every Friday/ casual day I could be heard telling someone, or everyone, how good it felt and how much I wished we could just wear jeans and t-shirts every day!

Some people said that I would get tired of it, and I gave that some thought. I have now been eighteen months out of the classroom, and I can tell you that it didn’t get old! There are many things about having and dealing with cancer which are pretty awful!

One of the really annoying things is a whole new thought process when you have any aches, pains etc. Pre-cancer, if I woke up with a sore back I wondered if I had slept in some strange position. Now, while I know it could be the same, I wonder if it is a sign of cancer spreading or some new side-effect from medications. I have heard many of my fellow cancer patients comment about this as well. Trying to figure out what you need to tell the doctor and what is just everyday stuff. If you feel like you are getting a cold, or you cut yourself, you worry that you may get an infection.

For people with non-metastatic cancer, I have heard that this goes away after a while after being declared cancer free. I’m not sure if the fear that it will return ever truly goes away. It is important to have good things going on in your life, like time with friends and hobbies. Things that will take your mind off the negative side of things.

Wonder what I’m wearing today? Jeans and a t-shirt of course! Today I have my “dressy” black jeans on and a sweater over the t-shirt. That’s right, here I am living the dream!

 

Dentist’s chair or Chemo chair?

bitmoji1814500902I had a dentist appointment last week to have a molar filled. I have always had some anxiety about dentist visits. I would have thought, however, that after going through surgery, chemo, and radiation, I would have no problem with the dentist. WRONG!

It sounds stupid, but there I was having to do breathing techniques and distract myself to stay still…not flee the chair. On the way back down to the car my legs felt wobbly. Maybe long time anxiety trumps the unknown?

I give up, and other passing thoughts!

First, don’t freak out! I do not quit!

The last entry I wrote was about tests coming up and being stressed about what they may show. I have had my tests to check on the status of my cancer the day after I returned home from being away with my sister for over a month. Three days later, I had an appointment with my medical oncologist to touch base after tests and over a month off of treatment. At that appointment, I found out that I had lost weight over the month which was a pleasant surprise. The results were in only from my bone scan and it showed a new metastasis to my sternum. So much for the hope that we had actually managed to kill it all!

I wasn’t really surprised by this. But still, it took some processing time. Tom being away, I had gone to the appointment alone and it made a big difference in that area. As the doctor was examining me I was thinking about how often she has to give this sort of news and I said, “You chose this specialty why?” She said not to get her started. Of course, I told her that I was very glad that she had chosen oncology. We decided that we couldn’t really know if the Ibrance had been working since I had taken over a month off of it. So we decided to continue with that treatment for three months, and then reevaluate.

As I drove from there I was going through things in my head. My sisters had texted already to find out results, but I was uncomfortable with responding since Tom didn’t know yet. I picked up my daughter to take her home and made small talk. It didn’t seem fair to dump it on her. When I got home I sent messages to Tom that we needed to talk, and then I waited.

As you can likely surmise from the existence of this blog, I am a sharer and I found it really hard to just sit with the information to myself. So, I stewed! I don’t really remember how the rest of the day unfolded. I might have made supper, or I may have just made good use of one of the blankets friends had given to me and stared at the tv. I had gone to “that bad place,” as my sister-in-law calls it.

When Tom called I told him about the appointment, feeling like a bit of an ogre for dumping information in his lap about which he could do nothing at all. I guess that happens normally, but it is usually the doctor doing the dumping. He offered to come home, but I said he should stay and have fun. After the call, I couldn’t really face a bunch of separate messages, and knowing how my girls always figure that something horrible has happened when I call them both to the living room for a chat, I composed an email and sent it to my three kids (all adults) and all my siblings.

The next day I was to Saint John for a follow up with one of my radiation oncologists. He had the CT results which showed several more spots on different bones. We talked about going forward with no need for regular follow-up appointments. He asked about pain and I was glad to say that I don’t really have much so far. I don’t even take Tylenol most of the time. He said to call him when pain can no longer be helped with regular medication and he would do a targeted radiation on the spot to relieve pain.

Again I drove home alone, absorbing what I had heard. I was in that “I give up!” zone for sure. I had to stop at oncology in Fredericton to pick up my Letrozole, and while I was there they told me that my doctor had decided to do four treatments of a bone-strengthening drug called Zometa. This is an IV treatment, and it was booked for Valentine’s day.

At some point, I talked with my sister, my kids, my minister, and friend. Having thus processed, I realized that nothing had actually changed. And just like that, the “I give up” thought began to fade. As they say, we have good days and bad days. I won’t go as far as to say that I am not Susie Sunshine (I don’t think that description has ever been associated with me) but I am definitely back to a level place. I will be on chemo of some sort for the rest of my life, hopefully, that will be a long time, but if it isn’t, it can at least be a good time!

Testing, testing, is this thing gone?

A year ago on Groundhog Day I had completed 3 chemo treatments and was expecting my next in 5 days. I was writing about things like hair loss and night sweats. Lots has happened since then and I am through with most of that.

I have been off treatment and away from home for a month now and when I get back on Monday I have a week of tests and appointments.The only day without a test or appointment is Tuesday and by the end of the week I expect I will be set to start my next round of oral chemo and will know if there is any sign of active cancer in my system at the moment.

In some ways I feel like the groundhog today. While it is entirely possible that I get good news, a big part of me wants to retreat into my nice warm hole rather than risk finding something scary when I peek out into the sun.

Moving forward

Image-1 (2)Hi all, I think it is time to update you on my progress. As you know, I have finished with chemo, surgery, and radiation. On Tuesday I began to take two new medications; Letrozole and Ibrance (Palbociclib).

Letrozole is a medication to take every day which works to reduce the amount of Estrogen in my system. Estrogen encourages the growth of cancer cells, so less estrogen is a good thing.

Ibrance (Palbociclib) is a medication to take every day for three weeks, and then take a week off. This one aims to keep certain cancer cells from dividing. It is a newer drug than Letrozole and is still being studied. Approved for sale and use for specific purposes, the company has been asked to do further study to show what the drug actually does. I am a part of that trial.

Overall, the goal is to keep any stray cancer cells from developing further. There is a whole list of possible side effects for both drugs, but so far (3 days) I am not noticing anything.

 

For more information on Letrozole check out Letrozole by Teva

For more information on Ibrance check out About Ibrance 

 

 

Updating some pictures

On my last day of radiation on my rib the radiation therapists offered to take some pictures which would have gone nicely with some of my posts.

First is this picture of me holding an unmoulded body mould so you can see what I was talking about. In the original post I just used a picture of the ones they had stored on a rack.


Next is a picture of my mould which I layed in for 5 treatments.


Next is one of me and the machine for the stereotactic treatments on my rib. I hate the pic of me, but check out the machine.


Did you notice the cool ceiling? Each room had one; one spring, one summer, and this one for fall.