Here I am sitting on my couch at home with the morning light shining through the blinds and listening to the news. On the wall across from me, I can look up at three little paintings that I bought on the weekend. They are the three starter pPokemon from Pokemon Sun. They are taking the place of much more grown-up art, but so much more fun! I haven’t smiled at the needlepoint that was there previously in years, so out it goes!
It is the middle of the week that I thought I was going to be having my mastectomy and I am waiting for a call from the hospital to tell me when to go in for a CT scan. The results of this scan will either confirm the current plan or change it yet again.
Apparently, mine is an unusual case. I wonder if they tell everyone that? Because I have a single Metastasis the doctors are scrambling to find the best plan for me. This is great, except it is really hard to have all this uncertainty!
As of today, the plan is to check the CT scan to be sure there is still only the one Metastasis. If there is only one then I will have the Mastectomy next Wednesday. If not, I think we are back to the drawing board. Questions of radiation, surgery to remove the metastasis or stereoscopic radiation on the rib will be dealt with after that.
In 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.
Today I find myself at home feeling somewhat as I imagine a caged tiger may. At some point today my case, my test results and medical records will be speaking on my behalf at a meeting to decide on a plan for my future. I don’t like not having control but that is one of the big things that cancer does to us.
So, Tumour Board Rounds are today and my surgeon is taking my case there to discuss whether or not to do a mastectomy. When I met with her after the chemo was done she felt that the tumour may be gone, in which case there didn’t seem to be any particular benefit in surgery. She ordered a scan and added me to the list for the biweekly meeting of the medical and radiation oncologists, surgeons, radiologists etc. at which they talk about cases which are not as straightforward as others.
It is a little different than the usual waiting for results from tests because I know for sure that they are done and in the hands of the doctors but I am not going to be the first after the surgeon to know what the scans showed. Part of me wants to hide under my blankets and try to sleep the day away, part wants to sit by the phone waiting for a call that I don’t even know will come today, part wants to run away altogether, and a last part is thinking that my problems are inconsequential beside the horrors people in Manchester are dealing with today following the suicide bombing. It is rather hard to feel centered when all those parts of me are running in different directions!
I 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.
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?
I have been trying to get my head around changes that are happening in my life. I tend to flit from one thing to another. I was sitting with my daughter when I realized, and mentioned to her, that I don’t really have a bucket list. I don’t have a list of things I have always wanted to do and have yet to do. I guess there are a couple places I would like to go. Maybe I have been spoiled and just did what I wanted at the time. My daughter tried to think of things for me and mentioned Disney…
I have one of those book of lists you can buy and one page of it which I hit a dead end on was the bucket list one. I have plans, which may need to be adjusted. I was supposed to be retiring after 28 years as a teacher and starting seminary next fall to continue training as a Presbyterian minister. On that track I had; finish degree, get a call, be ordained, work as a minister. I’m not sure how buckety that is, but that was it.
If you, like me, wonder where this idea of a bucket list comes from, other than the movie with Morgan Freeman and Jack Nicholson here is a link to one of many blogs about bucket lists. What is a Bucket List?