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.

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.

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!

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.