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.

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 

 

 

What you won’t see/ painful handshakes 

This past Sunday I preached at my home church. When I volunteered to do it two weeks ago, it seemed like a good idea. I had not considered the impact post-radiation issues would have on my ability to focus on study and writing or what would be involved I  preparing for the service itself.

What people didn’t see at church was the seeping mess I had to clean off my underarm area before I could even consider getting dressed, or the hassle of coming up with a top to wear that was appropriate and was least likely to show seepage or staining that I knew would be continuing throughout the service. There was cream to apply to the non-open areas when the burning is making the skin hot and super dry as well as medicated cream for the open area. In order to wear a top at all the last area needed to be covered with a non-adherent dressing. There was no way to secure this as the skin around was also damaged. This along with Advil and Tylenol and I was ready to go.

After service it is traditional for the person who preached to stand at the back of the church to meet and chat with those in attendance. I love this part of the morning! What I hadn’t thought of, and hopefully people didn’t notice was that a nice firm handshake turned out to be quite painful. 

As of today it has been a week since I finished radiation which sounds like a week past the struggle, but that is far from the truth! By Saturday I was at my wits end as to what was the best thing to do for wound care. Was it better to leave it open to the air (which meant no clothing and my arm up in the air like a wing or something) or should I try to find a way of covering it, and with what? Tom and I have been to almost every pharmacy in Fredericton trying to find the items that had been suggested to us for skin care. Most places didn’t have what we needed, some didn’t even know what we were talking about. How did the hospital think I was supposed to do this on my own?

On Monday Inlucked out and got in to see my family doctor and she immediately set me up with an appointment with a wound care nurse. When I finally got in to see her yesterday she explained that the reason for the level of pain where my skin has broken open is that it exposed the layer with all the nerve endings. Rah!

I showed her the directions I had been given and she was surprised at what they thought people could handle on their own. Then she cleaned it up and put a dressing on it that is pretty similar to what I had for the mastectomy. It needed to be so large to keep the whole area away from friction as well as having healthy skin on which to anchor it. The relief from this was awesome! Not only that, but the relief from the pressure to go it alone was significant. The dressings can stay on up to three days and I can go to the clinic for changes. I am not looking forward to the tape removal, she warned me to take stronger pain mess for that, but overall things ar better.

Some other things people in my cancer circles have mentioned that people don’t see include; 

  • the amount of energy they expend to get out
  • the fact that, while they may seem perky for the duration of an event, it may be the only time they are active for the whole day
  • some people feel their illness is somehow dismissed when people say how good they look (I haven’t minded this at all so far, keep the compliments coming)
  • the level of their fatigue

I have put links to two pictures below. I didn’t put them in the post itself because you may not want to see 
The first is of my skin before I went for help, it had progressed. https://www.flickr.com/gp/70909221@N02/zj56Vr

The bandaging from the wound clinic. https://www.flickr.com/gp/70909221@N02/4E002P

The bell gets rung but the burning will go on!

Today I will have my last radiation treatment on my chest area and I will ring the bell to celebrate finishing 25 treatments.
Up until last week the treatment was pretty easy to handle. There has been no immediate discomfort from being ‘zapped,” but rather a cumulative effect of a worsening sunburn. Last week though the skin under my arm broke open. It is both more painful and a but gross. While there will be no more radiation, apparently the damage will continue to progress for around a week. 

That being said, today is indeed a time for celebrating!

Making the mould/ marking for radiation

If you remember, I earlier wrote about my marking appointment for breast radiation when I thought a body mould was going to be made and it turned out that they just used a support frame with measured placements for consistent positioning.

Last week I had an appointment for marking for radiation on my rib. Gone was the frame, and instead the bed was covered by a sort of cushion with a nylon cover. It was a bit like a semi-stuffed bean bag. Once they had me in the position they needed they sucked the air out of the bag and it gathered more closely around me and became rigid. It is now a mould of my body which I will lie in for treatments.

The best part of this is that when my treatments are over, they will let air back in, clean the surfaces, and hang it up to wait for the next patient. Brilliant, reusing the mould rather than breaking it!

In the radiation waiting room

I am almost half-way through my radiation treatments and it occurred to me that the waiting room experience may be unique to this area. When you go to your family doctor there is usually lots of time to wait and lots of other people in the room. If there are 20 patients waiting, they may all have a different issue for the doctor. There is little sense of shared experience. This is the same at almost any type of waiting room. Even in the general oncology waiting room you know that everyone is there about cancer, but you don’t know what stage they are at or what will be happening when they are called in. This is not the case in the radiation waiting room. 

At least at the Saint John Regional, each radiation machine has its own waiting room. There are chairs, a tv, a water cooler, and a little fridge with the Ensure name and logo and full of various ensure products. Sometimes the tea cart comes by with coffee, tea, and juice on offer. 

People usually arrive in pairs one the patient and their driver (most people have a family member or a friend go with them to their treatments for company as well as to drive). The patients go by the door and drop their schedule in the slot and then go change into johnny shirts. And then the waiting begins. Some days they are exactly on schedule, so there aren’t many people there. You can tell things are running behind when the room is full! Sometimes it is very quiet and at other times conversations get going, especially if things are behind.

You get so you know the folks who are being treated on the same machine. In this room, you know that each person who is a patient will be called in turn. They will walk down a hallway, around a corner, and into the room with the radiation machine. You know that each person will find the threatment bed set up specifically for them. They will be settled into position, reminded to remain still, and then the technicians will all leave the room. They will be alone with the machine. As they lie still the machine, and sometimes the bed, move around and periodically the there will be a click as the “beam on” sign lights up and the machine hums. They click off together and positioning begins again. They will know when the treatment is done when they hear the technicians talking as they come down the hall and into the room.

In the waiting room you see them come out and head off to change into their own clothes and then they appear back often with an expression of accomplishment, and tell their driver that they can go. If it was their last treatment they will have rung a bell and will have a big smile as they celebrate, hoping not having to come back. When my treatments are done, I will be the one hoping never to return. I will likely never see those people again, but I expect I will remember them as they have shared in this experience with me.

Radiation Day One

Yesterday I had my first radiation treatment and all went well.

Key points;

The room was much warmer than the CT room.

I still got to have a warm blanket.

The ‘bed’ was all set to match the last time.

*No pain! In fact, nothing touches you at all other than the bolus. 

They can even tape the bolus without tape on your skin!

They were playing music which you could easily hear over the machine.

Your whole job is to lie still and breathe. 

A good chance to pray for everyone on your prayer list.