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.

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!

How Many Directions Can I Go At Once?

funny-clip-art-meetings-dromggo-top-2Today 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 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!

Stop dropping shoes already!

You know that expression, waiting for the other shoe to drop? Well, I feel like it has been raining shoes over the last couple months, and today yet another.

Tom and I went to meet with the medical oncologist (the doctor who handles chemo). I had a few tests since my last appointment, and today there would be new, good or bad.

Today’s shoe, cancer has spread to a rib. That means it has metastasized, gone to other organs etc, and we are no longer looking at curing the cancer but staying ahead of it.

I have no quips, nor any deep insights today.

Froot Loops and coffee

coloful-fruit-cereal-loops-bowl-43433240Some days when I enter the kitchen I automatically turn the kettle on for my morning mug of hot water and then get started on whatever healthy option I have at hand for breakfast. And some days, like today, I head straight to the coffee machine and the sugar cereal. Today’s cereal is Froot Loops, not only full of sugar but also a good amount of food dye!

So, as I pop a yellow loop into my mouth, an update. This has been a moderately busy week on the cancer diagnosis trail. Monday I had my blood test to check my creatinine level, if it is too high the kidney isn’t able to handle the chemo drugs properly. Tuesday we had a drive to another town for my husband. Yesterday I had my bone scan. A simple injection followed by 2 1/2 hour break and then a painless, noiseless scan. When I got home I had a call from my surgeon’s office to let me know that my lymph node biopsy had come back positive for cancer.

I must admit that I didn’t take the news very well, that is to say not very bravely. Much more of an “oh shit!” than an, “ok, we can handle this.” And then, what did I do? Yes, that’s right, I revisited the prognosis charts. I guess I hadn’t actually done this at the last step and was merrily going along with the idea of most people getting rid of the cancer for good, or at least 10 or more years. Not so, as it turns out, for stage III.

I had already heard that this was stage III, locally advanced, but missed the “Average 5-year survival with treatment” which my book says is 30 to 60%. Somehow, I had managed to miss this, or block it, earlier. The page is folded down by the surgeon and I’m sure she showed it to me when we met.

Enter Froot Loops and coffee this morning, and two boxes of Smarties (a Canadian candy) last night. I meet with my chemotherapy oncologist this afternoon and hopefully there will then be a plan of action to start beating back this stupid thing! Until then, have a Froot Loop on me!

Internet search/ blessing or curse?

computer-300x300Something that is different in the past 25 or so years is the fact that when you feel unwell, you can easily do research to identify possible  causes for your symptoms. There are all kinds of articles from both the perspectives of doctors and patients about the benefits and or dangers of doing such research.

Blessings

I like to know what is going on to the greatest extent possible, so surfing for information has taken over from my medical encyclopedia which I bought when I moved out of my parents house where I had access to theirs. There is, if you are careful of your sources, excellent information available to explain the process of diagnoses and possible treatments which can help to prepare you for meetings with doctors etc. or provide you with answers to some of the questions you didn’t think to ask at the appointment.

If you go to credible sources, such as the  Canadian Breast Cancer Foundation or Canadian Cancer Society or their equivalents from your own country, you will find information, tips, and links to other reputable sources as well as support groups.

Curses

The most obvious of the curses is that there is all kinds of stuff posted by people with no medical qualifications. If I were to start with symptoms and diagnosis suggestions this would be just such a curse. Hopefully I have never seemed to be giving medical advice! These sources may give you false information, you may take the information to be true equally for all people, and they may increase your anxiety. I think most of us would agree that the last thing you need is more anxiety!

I ran into the opposite curse on my path. I have been going through perimenopause symptoms for some time and tend to look on sources about that when I have new symptoms. So, when I started to have nipple soreness and then later an area that felt thick I found all kinds of references to this in perimenopause references and just assumed that all was normal, annoying, but normal. As I continue to see changes in the breast now, I can’t help but blame myself for not going to the doctor when I first started to have issues. By late June, I had told Tom about the change and when he asked if he should be worried I said no. I might have been able to have surgery right away at that point and thus avoid chemo.

Since then I have looked for information on other topics which had a mixed result. I was interested in the idea of tattoos and so I searched images. For the most part, this was great. But amongst the pictures of beautiful tattoos there were many pictures representing the worst case scenario.

So what?

Internet research is a double edged sword and I think we need to remember that. I am trying to maintain a balance between wanting to know more and putting my faith in the sources I already have, and primarily my medical team. I have also decided not to do any Google searches after supper time from now on!

Meeting the surgeon

I had my first meeting with the surgeon on Halloween day. At that point I was expecting to hear about surgery and then follow-up. Tom and I went together and were rather nervous. I had heard awesome things about the doctor, and that she was very direct.

When she came in she sat on the stool beside the examination table, I was in the chair by the end. She introduced herself and then said, “For you, a picture will be wort 1000 words!” She proceeded to explain my cancer and MRI results by drawing a diagram on the paper that covers the table. She also had a book for me and turned down 6 pages for things she thought I would want more information about, and used the book to help things make sense.

This is the book!
Thanks to CBCF for providing this book!

When I walked in, I knew that there was carcinoma, some contained in a duct, and some that was invading into nearby tissue. The new news was that the whole breast was involved and that in its current state surgery was not possible. There were also three lymph nodes involved and two spots on my liver (though she said they were probably cysts). I felt like I had been kicked or something.

My heart really sank when she said I would need chemo! She went through things in great detail and I understand why the chemo is necessary, shrinking things to the stage at which surgery would be possible. So, surgery wise, I will eventually have a modified radical mastectomy. “A modified radical mastectomy removes lymph nodes in the underarm area in addition to the entire breast and nipple.” For more info.

Along with this surgery information she called the chemotherapy oncologist I would be seeing to find out what other tests she would need done. Hence the lymph node biopsy, CT scan, Bone Scan. For more info. And thus began the crazy making waiting again as I waited first to hear when the tests were scheduled, then when results would be in, and finally when I would meet my oncologists…

Heading to meet the radiation oncologist.

I have been working to catch this blog up to my present day, but today I am going to jump forward to today for a moment. Today I have an appointment with the doctor who will be my radiation oncologist. It seems odd to be meeting him first as it is my understanding at this point that I will be having chemo first.

There is a lot I don’t really understand about how the systems work, or what is regular timing. I was told by both my family doctor and my surgeon that things would be moving quickly and yet it has been a couple weeks and I am still not scheduled for all of the tests that have to be done before meeting the chemo oncologist. Knowing that it takes a week or more to get results from tests it is hard to imagine getting started attacking this thing before December. I lack perspective partly since I have not had any major health issues before.

Ok, so.I’m here in St John for my appointment. We were early so we went to the cafeteria for lunch. As we were walking past all the signs for radiation and cancer treatment I said to Tom, “I vote for a no-thank-you serving!” It is all just a little too real now!

The waiting room is nice and every other person has the same yellow wrist band I have. It isn’t a club I would have chosen for sure!

OK, the appointment is over. I’m glad I have written down a list of dates for all my appointments and tests so far as the doctor asked me for all of them. He went through that, did a breast exam and then went through things with us. He says it is T4 (Staging & Grading) which means I won’t qualify for the trial treatment which doesn’t irradiate under the arm. He agrees with my surgeon that he will be seeing me after chemo and surgery are done. He expects me to need 25 treatments which is 5 weeks of radiation each week day.