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.
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
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!
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.
Twas the night before chemo and all through the house
not all creatures were sleeping, not just me and my spouse.
The clock at my bedside read quarter to four
and we needed to sleep those three hours more.
I will spare you any more bad parody of Clement Moore’s poem for now! As I write this it is actually the day after chemo, my second treatment, but I had the first line of this going through my head all day on the 27th. It felt a bit surreal to me because, even though only 3 weeks, it felt like forever since the first treatment. So much has happened, most all of it good. I had the procedure to implant the power port last week, and munch of my hair is gone from my head, but other than that things are good. I’ve had visits and dinners with family, my birthday and Christmas and visits with my colleagues at the school.
I did get those three hours more sleep before getting up for a shower and heading off to the hospital with my husband for company and support. My first stop was the blood lab to get a test to see that my blood and platelet count was enough to have the treatment. Then we went for breakfast at the cafeteria, where I got a great bowl of oatmeal without having to worry about cleaning my pot afterwards. I may also have stolen a couple slices of Tom’s bacon.
Next was my oncologist appointment at which we found out that the measurement was down from 17×15 to 13×11! The chemo is indeed doing what it is supposed to be doing. My doctor was happy with this, as were we, and all was well for treatment number two of six. We went home for a bit, with a side stop at the gift shop to buy a cute new purse I had seen last week, since the chemo wasn’t for almost two hours.
The chemo infusion went smoothly and it was awesome to not have vein hunting involved, especially as at about the same time two men across from me had warm blankets wrapped on both arms and then went through numerous attempts to get a vein. They had gauze pads all over their arms before they finally got hooked up! Yeek! All my nurse had to do was clean the skin over the port and stick in a bent type of needle and cover it up and we were off to the races. Complete with waiting for the drugs to be mixed, we were done in two hours and headed home.
Last week I met with my counselor and one of his questions was about what I expected to be thinking as poison was flowing into my veins. At the time I said I mostly expected to be trying to think about something else.
Today was my first chemo treatment. I had an IV inserted and then two different drugs. So what did I actually think about? I spent most of my time colouring, but when I thought about the IV my primary thought was, “You’ve had free reign up until now but that is all over. Die cancer cells, die!”
My husband found the area busy and loud, but I enjoyed the fact that there were other people nearby and several offered advice, or to answer any questions I had. We talked about port locations and their pros and cons. I think I would have been more nervous if I had been alone in a room. The nurses were great and I had a nice reclining chair. All-in-all, not a bad first experience.
So 1 treatment down, 5 more to go for now.
If you are a mother, you will probably have experienced that time during the last month or so of pregnancy when you decide that you don’t want to go through with it after all. For me, it was during childbirth classes when they showed hard plastic templates of 1cm – 10cm holes. If they hadn’t followed up with a video in which it became clear that dilation meant being able to be stretched to 10cm and not just having a 10cm opening, I’m pretty sure I would have remained panicked until my daughter was actually born!
I guess that is where I am now. I have rationally taken in the information, I understand the upcoming treatment and its purpose. I have made plans for the day, what to take with me, what to do during the treatment etc. I just really don’t want to do it. I know I said in my last post that I was glad to be getting started, and really I am, but I would prefer not to.
I’m going to go with the theory that, just as childbirth may have been easier than I thought (well not at the time, but in retrospect) this probably won’t be very pleasant, but the resulting reduction of the cancer will be well worth it. Right?
The actual news from yesterday’s appointments at the hospital is that I am starting my chemo next Wednesday. Woohoo!
No really, I’m pretty excited that I am finally going to be doing something to counter this assault on my body! I remember when I was first diagnosed and told that chemo wouldn’t be part of it, I was so thankful. I didn’t really like the idea of poisoning myself on purpose or of the side effects making me actually feel ill, which so far I have not. I remember my dad talking about chemo in the early days…a day of poison and then they give you an antidote so you don’t actually die. Hmmm.
Things have changed a lot and they have learned so much more about the disease and treatments! It was actually two years ago today that I watched my dad walk (seemingly totally healthy) into the operating room to have a colonoscopy. When he came to in his room he joked that he wouldn’t be driving anywhere that day! The surgery went well, but in the end he never did drive again. In his eighties, he was not strong enough to recover and died a couple days before Christmas.
OK, so back to me 😉 Other things I didn’t think I would say started with, “I have cancer.” but the ship sailed on that a couple months ago. Since then I have said that a lot, as well as; “I had a CT scan.” “I’m going for a bone scan.” “This MRI was much nicer than the last one.” “That biopsy was easier.” It also includes requesting a central line for treatments and whatever else may need to be given or taken from my veins. I am pretty practical and it makes sense to me, but it is a bit eerie to think about.
Of course there are the ‘bright side comments’ along the way like; “Ooh, I’ve always wanted to be a VIP!” “At least I won’t have to shave my legs for months!” “I get a great rate on hospital parking!” etc.