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.

Have I Lost All Perspective?

bitmoji1814500902After finishing with chemo I was expecting to have surgery. When I finally saw the surgeon she said she didn’t think it was necessary, which is to say it was no more likely to return to the breast than anyplace else in my body. She sent me for an MRI three weeks or so ago and said she would take the results to tumour board so they could decide on the best course of action. The tumour board met on Tuesday and after not hearing anything by the end of Wednesday I called the surgeon’s office a few days ago expecting to set up an appointment. Instead, the receptionist told me the following;

Scan results – main mass resolved (which I am guessing means gone?)
                   – skin thickening reduced
                   – responded very well to chemo
Appointment plans
     I am now to see the radiation oncologist to discuss possibility of aggressive local treatment ie. breast, lymph nodes and targeted on the rib
     After I see him I am to make an appointment with the surgeon re surgery.

I was completely deflated! I sent the news out to my husband and siblings and they all responded positively. That is to say they saw good news. I only saw starting all over with having no idea what was goig on and dealing with doctors who all had different views. I thought the point of the board was for them to figure out what the hell they will recommend!

I have been trying to get my head around this and I guess it maybe means that they think they can get totally rid of the cancer if they treat it aggressively now, which they had previously said they wouldn’t do because it was stage 4. I guess that would be good, though it feels a little late, or maybe like a total pipe dream!

I wonder if I have lost my ability to see things in perspective! Should I have felt relief from the news? I know there are far worse things I could have heard and many would be annoyed that I am whining about having good results etc.

So I’m back to the limbo situation. I’m waiting for a call re an appointment about radiation. After I have had that, I am supposed to call the surgeon to set up an appointment. I hate this! I hate now knowing what I’m going to be doing, if I can plan things or not!

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.

 

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.