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.

Today I become a rebel!

I am sitting at the Saint John Regional Hospital right now, killing time before my appointment for marking and prep for radiation therapy. I will be joining the tattoo crowd!

Along with the tattoo they will be making a body mould which will ensure that my body is in the exact same position for each of my 25 treatments. I’m quite curious about the process for this.

My appointment is in ten minutes, I’ll fill you in when we are done.

OK, so it has been a few days since I wrote that intro. All went very well and I now have four tiny tattoo dots. My daughter said freckles and that is pretty much what they look like. It was a very interesting process.

When I first got there I had a form to fill out and then I had my picture taken for an ID. Next was changing into a lovely hospital gown, high fashion for sure.

The marking etc took place in a CT scan room and began with appologies about the cold. The CT scanner gets very hot when it spins and needs a cold room to avoid overheating. Two nurses, a student nurse and a tech did everything and made me as comfortable as possible through the process.

There were green laser lines in a T across the room which I assume guided them in positioning me. The bed for the scan had an odd looking apparatus with a metal base with a bump around halfway up, and a series of red padded arms at the top. It turns out they don’t make a mould, at least not for irradiating the chest. Each part of the apparatus was adjustable, and, like an optometrist’s set up, each minute change they made could be recorded in a series of letters and numbers. This allowed them to get me in the position they needed and be sure that each time I go they will be set precisely the same.

It all took quite a while. They got me to lie down and adjusted my height by moving the bump to show where my bum needed to be. Then there was changing the arm holders so that, with both arms above my head, I would fit in the machine and put the right side of my chest in the necessary position.

Once that was done, they put a wire tape along my scar, and used marker to make dots on my sides and on my chest. These were temporary markings for aligning the scan. Then they put a sort of jell pad, they call it a bolus, over the area for radiation. Apparently, this pad acts as a layer of tissue.The radiation doesn’t reach full power right at the surface, so this acts like extra layers of skin so that they can get near the surface most effectively. This was positioned very carefully and then taped in place, checked, adjusted, and retaped.

When all this was done, I had a CT scan which they will use to plan the treatment. After they knew that the marker spots were definitely in the correct spots they cleaned the areas, dropped on some ink, and with a pin made one poke in, wiggled it a bit, and poof I had a tattoo! In the end, I had four, and it really didn’t hurt even as much as a blood test or an IV.

I am feeling pretty good about the treatments overall. I am not thrilled to need them, and a bit worried about how my skin will react. I do sunburn quite quickly. We will see how it goes. I have the cream they recommended and if that doesn’t work there are things they can prescribe. With the prayers of many people, and mine, things have gone well thus far and I know things will work out.

Don’t mow the lawn or wallpaper the bathroom.

20170719_112512After my unilateral mastectomy (one breast removed) last week I went home with a big dressing on my chest and underarm, two drain tubes, and two pages of post-op instructions from my surgeon. I couldn’t help but laugh when I read the instructions for activities of daily living!

My biggest laugh came from the idea of resuming regular activities such as household chores…the joke is that I don’t really do much of that normally. It is really easy to return to regular activities when that only involves watching tv, playing Pokemon, and using the computer.

A couple things I really liked from the instructions are;

“The psychological recovery can be much harder, and you will get mentally better faster once you realize you are not ‘sick’.” This one was not really funny but definitely true. I don’t know if I am psychologically recovered or not, but other than some discomfort which seemed to be more due to the tape on the dressing and the drain tubes than the surgery itself, I am definitely not sick from the surgery.
“If there is a drain in place, you must avoid excessive use of the affected arm as it can result in increased fluid production and prolonged drainage. (i.e. don’t mow the lawn or wallpaper the bathroom).” This was primarily funny because of the unlikeliness of me exercising excessively, mowing the lawn, and definitely not wallpapering any room in the house.

One week later I have no more dressings, just the skin damage the tape does to me, no more drains, a line of paper tape over the incision site, a multicoloured bruise, and a new asymmetrical look. Today I have an appointment to go over the pathology report and then I’m going out with a good friend.

Tell Me Face-to-Face!

bitmoji767993325In case you aren’t following along, I had recently received results from tests and from the tumor board meeting over the phone from a receptionist and was totally confused. I didn’t feel I understood anything from the news as it didn’t mesh with anything I had heard recently. This is not how patients should ever hear information about their health or plans!

Prior to the tests I was told I would have a meeting with the surgeon, who ordered the tests, after the tumor board meeting. That is what I expected and then to just hear over-the-phone basics was a shock! The next I was told to expect was a call from the radiation oncologist’s office to book an appointment. Since I had previously been old there would not be any radiation until far later in my journey, I was a bit freaked out! They called to give me an appointment for yesterday, which they later changed to next week.

On Wednesday I had my appointment with the medical oncologist which had been booked the day I finished chemo two months ago. It was originally to get started on hormone treatment, Tamoxifen. Tom and I went in with no idea what to expect and with memories of our first appointment with her when we were told that I had stage 4 cancer and would not be treated for a cure, but just to manage the cancer.

Without boring you with tons of details, in this face-to-face meeting she was able to explain the results, the plan and the rational in about ten minutes and we left much relieved! The board decided that since the chemo went so well they would switch gears a bit and continue aggressive treatment. So now I’m back to the mastectomy and chemo plan with an additional radiation treatment in Halifax which will directly attack the spot on my rib. When all that is done I will then start hormone treatment with a new drug which has recently been approved. The procedures may be scary, but it is action and that feels good.

So much stress and fear would have been totally avoided if the receptionist told me nothing and just set up an appointment like I was expecting when I called.

On The Road Again!

Hi all!
004I am now finished my chemo treatments for now and so plans that have been screwed up by delayed treatments and things have moved forward. Thursday you would have found me behind the wheel on the highway between Fredericton and Vaudreuil-Dorion with my younger daughter in the passenger seat trying to sleep. It was great! I love driving and was glad to discover that two weeks after my last treatment I was feeling well enough to drive for 9 hours and didn’t need to go directly to bed when we arrived. The best part of this is that I am getting a chance to visit with my eldest sister and brother whom I have not seen since before Christmas.

So, treatment is over. After two weeks one of the first things I did was have a mani/pedi which was a real treat and I couldn’t have shellac nails while in treatment due to the strong chemical required to remove it. I’m looking forward to reduced chemo brain issues, though I gather that will take some time.

I met with my surgeon early this week and was surprised, and I think pleased, to hear that she doesn’t think I need to have the planned mastectomy. Because we aren’t going for “a cure”/ because the cancer has already moved beyond the breast, apparently it is no more likely to return in the breast than any other place in the body and so the benefit of the surgery is questionable. I am going to have an MRI to see if there are active cancer cells in the area or not and then the decision about surgery will be made. Either way I will be beginning hormonal treatment in a few weeks which is meant to slow regrowth.

It is interesting to be in this place with the cancer. When I was diagnosed originally I couldn’t wait to get rid of the breast. Now I see it as a surgery, a chance for complications, potential infections, and am quite pleased to possibly avoid it.

That Ubiquitous Pink Ribbon

Capture

Ah, the pink ribbon. The symbol of breast cancer as a sign of support and fundraising. It is everywhere and on everything from clothing to tools, chairs, phone covers, memory sticks, vacuum cleaners, car batteries, watches, jewelry, dog leashes, and even tire wheel rim valve stem caps. I have long supported breast cancer research to some extent, but not usually by buying pink ribbon things. I questioned, and still question, whether it was more useful to buy a cute shirt with a pink ribbon thus giving a portion of the cost to the foundations, or whether to just give the whole cost of the cute shirt and stick with the clothes I already own. 

I think we all have some sort of reaction when we see these bright loops of ribbon, or their facsimiles, whether we smile ; because they are pretty, because treatments have advanced so far, or because we know someone who has survived; or if our hearts sink as we think of friends or family members who are suffering or have died from the disease. 

My reaction has changed now, not surprisingly. I am actually quite torn. My initial reaction seems a bit visceral, as if I’ve been punched or something, especially if I see them somewhere I’m not expecting like on a sign as I’m driving somewhere. I understand that it is meant as a sign of hope, a sign of strength, a symbol of survival and those are all good and much as I previously reacted. Now I am reluctant to buy anything with the pink ribbon as if it has now become an identifier or some sort of team logo that has been forced upon me.

Don’t get me wrong, I don’t think anyone is forcing anything on me. It is the disease that has forced itself into my life. I realize that lots of people who do not have breast cancer like to show their support by buying, using, and wearing pink ribbon items and there is no reason why anyone who doesn’t know me, or doesn’t read my blog, would bother to think, “Ooh, look, she is wearing a pink ribbon. She must have breast cancer!” any more than I ever have when I have seen people in the pink. 

Yes, these are the weird things I think about. Maybe after this round of active treatment is done I will feel more comfortable with the ribbon. In the meantime, stay tuned for the next navel-gazing ramble.

If you are interested in pink ribbon items that are reputable and monies go to the Canadian Breast Cancer Foundation check out this link.

 

Chemo Day

Hi all, I thought you might be interested in a trip to chemo with me (I have a vague sense that I did this one other time, oh well). My treatment is set for 1:30 and it is now 1:20. I stopped at the counter when we arrived and got my hospital bracelet on. I am now sitting in a waiting area writing this and listening to a couple of guys talking sports. Tom is using his IPad to proofread an essay for our daughter. I brought my cell, on which I am writing this, and my Nintendo 3DS.
Based on the lack of coats hanging on the rack, I would say there aren’t as many people today as usual, though I’m off my regular schedule by a week.

It is now 2:00. I was called in about 10 minutes late and chose a spot I haven’t sat in before. It is back in the corner and has a window and some extra space which is nice.  I have since been weighed, had vitals taken and had the IV hooked up to the port in my chest. The needle that goes in hurts more than a regular needle because it is quite a bit bigger. There is no missing or hunting for veins though so it is a net gain. There are also all kinds of health questions they ask; fevers, tingling, eating ok, change in taste, swelling, bruising, digestion, bowels etc.

Now we are waiting for the drugs to be mixed up to get the actual treatment going. I took my anti-nausea medications. I’ll play my game for.a.bit…2:30 still waiting. I was getting cold so Tom got me a heated blanket, best thing about the hospital!

2:32 Oh…here come the drugs (I prefer the term drug to poison)! The nurses wear different jacket things and eye protectors when they bring the drugs…a little strange. So now we are doing the first drug which the nurse puts into the system using a syringe so she can control the flow. It is red and Tom was joking about it being Kool-aid. Now for the regular drip.

3:07 drip drip drip. I decorated a house in Animal Crossings Happy Home Advisor. The IV bag is almost empty…switching over to saline. My nurse just dropped off a medication schedule for the next few days.

In a couple minutes they will unhook me and we will head home. We are finished, at 3:30, I think we’ll stop at Dairy Queen on our way home.

An Aha Moment

bitmoji158916047When I discovered that I never really understood!

I went to visit my best friend the other day and came to the realization that while I thought I understood what she has gone through in her life, it is not until now that I can really understand.

My friend, not yet 55, lives in a nursing home. She has advanced Multiple Sclerosis and it has been many years since she was able to work, walk, drive, etc.  She has dealt with so many losses due to MS as well as struggles in terms of services and financials.

I remember  all the hassles she had with forms for disability coverage when she was first forced to stop working. I was reminded of it while filling out forms for salary continuation and had a new understanding of just what she dealt with. Given the “protestant work ethic” which was ingrained in our generation, it is demoralizing to write on paper that you are unable to do your job!

Another thing I have realized we now have in common has to do with people’s automatic reaction to us. Her disability has almost always been visible and I remember seeing people’s various reactions to her when we were out shopping or for a meal. While some people seemed uncomfortable, the main reaction seemed to be pity.

I didn’t really think of cancer as being visible, but the fact that I have almost no hair seems to work like a neon sign over my head blinking “cancer patient!” I remember the first time when a woman came up to me before yoga class with a sympathetic look on her face and told me that she understood, she had gone through chemo too. I felt really uncomfortable that day, somehow like my privacy was violated.

Most of the time I don’t think about cancer…though I guess it may seem like I do based on writing about it. So there I am in a store thinking about what I need or whatever, make eye contact with another shopper and there it is, the sadness, pity, or whatever. The, “Oh, you have cancer!” look flashes across their faces and at first I wonder what is wrong. Do I have something on my face, or in my teeth? Then I realize what it is, oh yeah, cancer. Thanks for the reminder!”

Waiting for the Baby Whites!

Yesterday should have been my second last chemo treatment and not that I really look forward to treatments I was definitely looking forward to being almost done. After my blood work on Tuesday, though, I was told my baby white blood cell count was too low to go ahead with treatment. Sigh!

bassinet-clipart-clipart-panda-free-clipart-images-e6jmha-clipartA month ago I didn’t even know that blood cells had babies and now my progress is depending on them. It is frustrating because I can’t do anything to nurture the little darlings to encourage them to grow faster. I was aware that people often have delayed treatments so I guess this is in the category of getting the full experience.

On the up side, I can’t feel their absence and so far I have avoided any infections throughout the process. I get a week extra of feeling pretty good before repeating the poisoning thing. And so it goes.

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!