The Time Between

aed10-timebendingIf you have been following my blog for awhile, you know that I have stage 4 breast cancer and am currently at the very beginning of my treatment. I have had 3/6 chemotherapy treatments with a single IV dose once every 3 weeks. In practical terms, I am at the hospital for part of two days one week and then have around 20 days with no doctor, at least thus far. It is a bit strange dealing with the time between.

First, it isn’t really between as the drugs continue to work for at least a large portion of the time. By the mid-point, I’m told, the chemo has killed off about all the white blood cells and platelets that is going to and the body has a little break and hopefully the blood recovers to somewhere near normal levels. So far (it occurs to me that I say that a lot in all my posts) I have not really felt unwell other than a couple of days right after the treatment and, compared to many on different regimens, I’m getting off really lightly!

This leaves the question of what to do with the time between. As an extrovert, tons of time alone at home is actually not high on my list of circumstances. One thing I have discovered is that scheduling too much stuff can be an issue, one thing per day seems to be lots an I am often quite tuckered out after that.

One might think, if they didn’t know me well, that all this time on my hands would mean that my home is now immaculately clean. So, I’m not upping my housework time! I have several things I do; read, write my blog, participate on cancerconnection.ca, puzzles, meeting people for coffee dates, bullet journaling etc. My adult children have gotten me into Nintendo 3DS games, I am currently addicted to Animal Crossing.

The odd thing is that a sense of time is somehow skewed. I am often taken by surprise in the first ten days after treatment that it is not much farther along. By the same token, however, I am just as likely to be somehow caught unawares when time is come for my next treatment.

I expect what is happening is that, after 28 years working in the school system with its bell schedules and calendars my sense of time passing is largely based on the first day of school, the morning and afternoon bells etc. It is as if I am Pavlov’s dog and nobody is ringing the bell anymore.

Woman on fire!

bitmoji-673346187It seems a little hard to believe right now, as I am huddled under my electric blanket with a fleece throw over my shoulders, but I have every reason to believe that tonight I will once again become a woman on fire.

It is chemo day. If the experience of my other two treatments holds, that means that this evening, and especially while I am trying to sleep, I will overheat. If you are familiar with the tv show Dr Who then you will know what I mean by regeneration. For those who don’t, it is when the Dr changes to a new body. Anyway, that’s what I feel like. Like heat, if not flame, is pouring out of me with no sign of stopping. Watch this little clip of River Song regenerating to see what I mean. Doctor Who – Melody Pond Regeneration

So, there is no screaming, and I don’t turn out to have a different body at the end, but the sort of blow torch extremities part, that is pretty accurate. I must say, I was never more glad that I have lost my hair than I was the first couple nights after my last treatment! I have taken some steps to prepare this time. I have actually broken down and spent the seemingly ridiculous amount charged for moisture wicking pajamas, most often marketed to women in menopause. I have also searched for tips, like take a hot bath before bed. I know! Hot!?! Apparently it tricks your body or something. It is like the thing about drinking hot tea in the heat, which cools your body. I don’t get it, but I’ll try it! bitmoji-729608686

Of course it is possible that I will not have the same reaction to the treatment this time and the expensive pjs will just be a nice addition to my sleepwear collection. That is one of the other joys of chemo, I’m told, you don’t necessarily have the same symptoms every time, even when the drug is the same. In the meantime, here I sit as my normal chilly self contemplating life.

 

Lint rollers and other hair care products

66902_pe180389_s5As most of you know, I am in the process of losing my hair due to chemotherapy. I have almost always had my hair short, sometimes extremely so, and I was not expecting to have much of an issue with the hair loss thing.

Over the years I have used an assortment of hair care tools and products. Brushes, combs, clippers, hair dryers of various sorts, shampoos, conditioners, dyes, even curling irons, barrettes, and ponytail elastics on those brief periods of longer hair! I did a Google search for salon supply stores and none of them listed lint rollers. I know, you are shocked by that!

I give you, the humble lint roller!

 

When my hair was starting to come out easily I had it clipped down to a number 2 (1/4 inch or so) and thought that would be great. And it was to some extent. The problem was that I couldn’t touch my head without coming away with a hand covered with little short hairs. Apparently I touch my head quite a lot. Imagine that awkward moment when, say at the checkout at a store, you ‘run your hand through your hair’ then look down and see your hand coated in short dark hairs…what do you do with it?

Even when I could keep myself from touching my head hair turned up on the collar of all my coats etc. As I noticed the layer of hair in my winter jacket the other day the light bulb went on. I thought, oh I need to remember to lint roll that when I get home. Wait! Lint rolling…hmm…

This is how the lint roller moved into my list of must-have hair care tools!

Twas the night before chemo…

Twas the night before chemo and all through the housexdelayed-sleep-phase-syndrome-cartoon-jpg-pagespeed-ic-fcwtrbsdeg

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.

 

I have the Power!

I now have something in common with Iron Man, but it isn’t visible on the surface, doesn’t glow and it didn’t come with the cool suit!

Today was the day that I have been feeling nauseous about, and it ended up being no big deal. I had a port implanted, specifically a Power Port. This is a device that is implanted under the skin of your chest or your arm which has a catheter running into a large vein. It is used to do blood draws and for infusions over time.

I checked in at 8am, and after changing, met with one of the nurses who went through the usual questions. I had requested, originally, an arm implant but had changed my mind. In our chat she said that, because the cancer is in the right breast, it would need to be in my arm because it was more complicated to put in on the left. She went to tell them and then came back out and said that the doctor had been there and was willing to do the left. Like so many things with this process, decision time was there quickly. I had started to adjust to the idea that it couldn’t be done and if there had been more time I might have said the arm was ok. But, she needed to know then and I had mentally prepared for the chest so I went with that.

The procedure took place in an x-ray room with a full table to lie on and a large and moveable x-ray tube and an ultrasound. There were three nurses (possibly one or two were techs, I couldn’t tell) and they were fabulous! They got me to lie down and did the prep work; cleaning the area and draping to keep the area sterile. I spent the whole time with my head turned to the right so I didn’t even see the doctor, but we chatted and bantered throughout the procedure.

That brings up one key point you may want to know. They did local freezing, but there were no drugs for relaxation or the like. I had read that there would be…online (must stop doing that!), but it is not done here. In the end it was ok, probably better because when they were done I got right up and left rather than having to stay an hour to recover from the drugs.

The worst part, as seems to be the fact most of the time, was when he put in the freezing. Holy crap the sting/burn was unpleasant! I needed more than they usually use, but in the end I had no pain at all with the procedure. There were two incisions, one right near my collar bone and the other in the upper breast area. When the port was in I had dissolving stitches put in and steri strips to hold things. They also put a gauze dressing on, but said I could take it off tomorrow.

Since the freezing came out, about 8 hours ago, I have had some aching and some tightness. There had been a fair amount of pressure used for parts of the procedure and that is where I am feeling the tenderness. I expect I’ll have a pretty big bruise, since I bruise easily. Tylenol and a bit of icing has handled the pain well.

So onward! My next chemo appointment will not involve hunting for veins either for the blood test or the infusion, and I feel really good about that!

So glad I went, even if I’m still not going to grow up!

2014-12-27-08-46-04-copyWhen I was a kid I used to love hanging around Mum when she was getting ready to go out, whether that be for grocery shopping or a night out with Dad. I remember being fascinated with the orderly process and economy of movement as pots, tubes, and containers were opened in turn, creams and things dotted on and blended in. It was like an orchestral piece of music, or careful choreography of a ballet. Things came out of their spots, were used, and were carefully replaced and all this time my mother’s beautiful face shone out to me. I suppose I saw her appearance change, she certainly did. I knew the pattern well enough to know when she was coming to the end of the process, and with the click the lipstick going back in the tube and a quick lip blot on tissue it was time to go.

When I was really young, I looked forward to being a grown-up and learning and joining in the “getting ready” dance.  I imagine I started in junior high school, I remember lots of eye shadow and Bonnie Bell lip glosses (mmm…root beer!) But somehow, it never stuck. Over the years I have decided to be a grown-up and start doing the skincare and makeup thing many times. Each time I mean well and I do enjoy the results to some extent. But, it is just so much work! And then by the time I am interested again, I have to buy all new product since it has been so long since they were last used.

All this is to give context for an unusual activity for me yesterday. Yesterday afternoon my sister-in-law and I braved the snowstorm to go out to a program called Look Good, Feel Better which was being held at the Law Association building in Fredericton. It felt a little strange for me to be going to an event with a cosmetics focus, but there was much more and even if I don’t use the eye shadows and lip sticks I received in my kit, I will make use of skin care information which was new to me, including shampooing your bald head…who knew?

There were four women there who are cancer patients and each of us had one or more support person there as well the four of us sat at a table set up with some items including a large makeup bag filled with an amazing variety of creams, powders, cleaning products etc. which had been donated by various cosmetics companies. Like most make-over type events, we went through a full skin care and then makeup regimen. There were some really interesting differences, I thought, like we are encouraged to use all disposable materials and to use a different tissue, pad, or Qtip for each eye.

The best part of the event for me was the positive social time with other people who are going through the same things as me, and making a new friend with a young woman who, like me, is getting started in the cancer/chemo world. There was so much care and support for us at the event and valuable information. I highly recommend that you attend this program should you find yourself dealing with cancer at some time in your own life.

Look Good, Feel Good is a program, free to participants, “which offers hands-on cosmetic and hair alternatives workshops for women with cancer in a caring and  supportive environment. It’s like a makeover for the spirit.” More information can be found at lookgoodfeelbetter.ca or facingcancer.ca.

 

Take that cancer cells!

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.

bitmoji1565408428
Die cancer cells, die!

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.

T minus 21 hours

20161206_162432_hdrThis time tomorrow I should be home from my first chemo treatment.  As I sit on my couch I am cuddled under a cozy electric throw. While writing this I am surrounded by…ok clutter mostly…but my Christmas tree is half decorated, a poinsettia and orchid from the church where I worked this past summer and flower arrangements from each of my brothers and their spouses. There are some new things on my tree this year. I have a couple of the ornaments my mother used to have on her tree, and I have a really nice new one from friends. I am feeling pretty spoiled for sure!

I am thinking about what I may want to do  when I get a  break of more than 3 weeks from treatment. I think there are some places I would like to go to visit, like Scotland, Newfoundland, and Canada’s northern territories. Of course, the first thing is to get through treatments, and so off we go!

 

I’ve Changed My Mind

noIf 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?

“Woohoo Chemo Starting!” and other things I never thought I’d say.

bitmoji-377167672The 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.