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.

A whole new meaning to Single Breasted

I have had my mastectomy and I quite literally am single-breasted. I know that everyone approaches these issues differently but, perhaps as predicted in my earlier post  No more bras?, I have decided to fully embrace the new asymmetrical look! I am not interested in reconstruction as it is more surgery and I hate bras to start with and don’t want to add the hassle of a breast form. What will this look like?

2c8960917eb087b39501a97a19ab6b8bI did some Google searching. Not surprisingly, most of the things I found about dressing post-mastectomy involved breast forms and bra options. There is also a fair amount online about the choice to “go flat” being made by many bi-lateral mastectomy survivors. The difference comes with the difference in the contour of one regular breast and the concave remains of a unilateral modified radical mastectomy, or the smaller change from a lumpectomy etc.

A few tips I have found;

  • Avoid tight fitting tops.
  • Fairly large patterns, like paisley, tend to work better than small patterns or solid light colours.
  • Asymmetrical tops may draw attention away from the difference.
  • Ruffles, frills, and draping fabric are helpful.
  • Wrap tops and dresses are good (though I have discovered that most wraps go in the wrong direction to minimize the loss of the right breast).
  • dark colors, especially black, camouflage the lack of shadow underneath the flat part of your chest
  • crisp shirts with breast pockets mask your contours
  • jackets and sweaters layered over form-fitting t-shirts draw attention away from your chest and hide any unevenness
  • scarves and shawls can be used to cover part of your chest

After a few days with trips to various shops in my area, I have a nice selection of short and long sleeved tops. I have yet to find a dress but that is less of an issue for me. Where did I shop?

Eloise

Winners at Corbett Centre

Second Showing

Whispering Gardens

I also found some great possibilities at Marksworkwearhouse.ca but haven’t gone in to try anything on. I started a board on Pinterest for pics of things that fit the single breasted look. Single Breasted Fashion

Some of the tips are from http://www.breastcancer.org/treatment/surgery/reconstruction/no-reconstruction

http://www.breastcancer.org/treatment/surgery/reconstruction/no-reconstruction

 

 

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.

Plan A, no B, wait! C, maybe D, today’s plan

20170705_075801Here 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.

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!

Things I miss/ things I don’t

best-disposable-razor-300x254This morning, as I was getting ready for a trip I shaved my underarms for the first time since December. This I didn’t miss! But then again, being both lazy and wearing long sleeves all winter, I wouldn’t really have been shaving in that time period anyway.

It did get me thinking about things I missed during chemo. I missed my hair, though it never went away completely. It is growing back pretty quickly and I’m already annoyed by the way it is sticking out around my ears! I bought a boar bristle s-l500beard brush for taming it a bit since none of the hairs are long enough nor close enough together to be touched by my normal hair brush. One thing that is an issue is that the hair I had all along is now longer than the new hair so I have hair and then a layer over it of fuzz. I’ll be seeing my hair dresser soon to get it buzzed to a single length!

I don’t miss the chemo itself, although it was nice to see the friendly faces at the oncology unit. I will see them when I go for my monthly maintenance on my power port, it needs monthly flushing. I do miss the excuse for not exercising and or for gaining weight, not that I ever needed excuses for that in the past!

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.