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.

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.

 

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.

Peering out of the cave

cocoon-cathyFor the last week or so I have been firmly ensconced in a cave of my own making. Of course, given chemo and all, it is a well ventilated cave. Otherwise I would have had to break out and rebuild many times every day!

A combination of factors sent me for shelter, mostly under a blanket on my couch. Chemo #4 took a bit more out of me, I’m just starting to feel better almost a week later. I wasn’t really sick, just kind of dizzy and tired much of the time. Along with this there was the general stress of life and added to it, paperwork! The paperwork, forms for coverage, was particularly demoralizing because rather than focusing on being positive it required me to focus on my limitations. I am not a fan of limitations, as you may have gathered from my earlier posts.

After our 70+cm of snow yesterday, no I didn’t lift a shovel,  this morning I got up, had breakfast and walked 30 minutes on my treadmill. After that I hunkered down and got the stupid forms finished and poof, I could feel the light outside the cave calling me out. I haven’t wandered out very far yet, but I am enjoying the space and the sun!