Caution – this one talks a bit about death …
First off, I must start this with a couple of pictures from my beautiful ride up Mount Hamilton this afternoon. It took me 2 hours to climb the 7 miles (not quite 11km) of all up hill.
Throughout the climb I found myself stopping in shaded corners to both catch my breath and cry. When I think about what is to come, I put on a brave face, but I still find myself crying at certain thoughts.
When I was first diagnosed, I was struck by how some things get clear. When we were creating our wills before we went on our Going East bike tour (http://goingeast.ca), I didn’t think I like the idea of my body being used for research. Now, I definitely want my body to be used for research or medical education. I think my time working with doctors and doing research has changed my opinion on this. I also have clarity as to where I’d like my ashes spread – over the molten lava on Hawaii’s big island. These are things that I couldn’t figure out before, but now just seem to make sense. They weren’t big decisions.
I also decided that I don’t really want to know my prognosis. Prognosis is a statistical measurement of your likelihood to survive. I don’t really care about that statistic, as the only measure that matters to me is me, and no statistic can tell me that.
Where statistics are handy is in deciding treatment options. When we know that two options have the same outcome (statistically) then it is truly a choice as to which feels right.
I got recommendation from the PAMF tumor board. They are recommending chemo first regardless of my HER2 status. Chemo would start within two weeks. They need to know HER2 status to figure out the chemo mix. It also takes about a week to get approvals from the insurance company. I think everyone thinks the HER2 will come back positive. Prior to any chemo I would need a sentinel node biopsy on both sides and to have a mediport installed (not sure installed it the right word … I called it a portal the other day … the idea is that they surgically insert a device that allows direct access to a vein for chemo and other medications that are given by IV – with a port I won’t need to get stuck every time someone needs to give me medication).
We meet with the oncologist and surgeon at Stanford for their recommendations on Monday. By then we should have the HER2 status. If it is positive, then I think everyone will agree that it is sentinel node biopsy followed by chemo.
HER2 is a bit of a mixed blessing. It is associated with increase morbidity, but the treatments for it have changed a lot. They have completely new regimes which are providing to be very effective (form what I understand) – so the morbidity statistic may be based on old treatments, and the new treatments haven’t caught up yet … not sure, will need to do some more research. Whatever the outcome, we shall adapt and move forward as it is the only direction to go!
- Becky
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Hi Becky,
I’m following along with you daily now and have been since you first mentioned your blog on FB. Finding it so helpful in understanding your journey – medically, spiritually, and emotionally. Thanks for sharing.
As for your access device, it sounds like what we, in Canada, call a port-a-cath. Looks or feels like a small round button implanted under the skin a little below your collar bone. (Or maybe something totally different?) Can be used long term for chemo. You can get IV meds through it and have blood taken through it too. Very helpful!
Sending good thoughts and healing prayers your way.
Christine
ps… I’m working on finding a good joke for you 🙂
I don’t have a port, and I have to say that as I’m getting towards the end of six months of chemo, this is becoming an issue. Chemo’s fairly harsh on your veins, and it can get a little harder to insert a cannula. So I’ve taken to looking quite enviously at people who made the port choice early.
And I agree completely about prognosis. It’s the aggregation of what’s happened in other lives so far, and even with impressively large data samples, it still falls short of revealing what will actually happen in any individual life in the future. So it’s slightly useful in choosing between one thing and another, but my general response has been to remember everything I’ve read about learning analytics.
Given the two crazy bruises I already have from the first blood sample and the MRI, I think the port choice is an easy one. The vampires have always had trouble finding a vein, so I will be glad when they don’t need to search anymore. Swimming was the only consideration, and I’m been assured that it isn’t a concern.
We’re with your here to Becky (and Scott) — on the great sailing days as well as the port installation days. Just so as you know :). And we are grateful for conversations about death. No warnings needed. As you likely know, we believe that more such conversations are life affirming — even life giving, and the fact that they are not is one of the totally backwards things in western culture.
But enough of the soap box when what is really important is your own moment to moment journey. Life is precious.
Enjoyed your post about being a quantified self and a qualified one. When I was doing a paper on cosmetics for men, I discovered how advertisers were trying to quantify men so that they would objectify themselves and worry about the appearance of their body pieces/parts: eyes, nose, lips, etc. Health statistics do that as well, placing you on a large grid and then you move around, depending on the results of various tests. It’s one huge objectification. The qualified you, on the other hand, is comprised of thousands of narratives with morals and evaluations that help you steer your way through life and have nothing to do with abstractions. Whatever you decide, it seems to me that a balance between the two is vital.
Plus…just thought I’d share some academic lingo. 🙂
Becky, I am so inspired by seeing you in full gear for biking and the beautiful picture of the view after biking 2 hrs 7 miles up Mount Hamilton. The more I read your blog I am motivated to go and exercise today. Aqua Aerobics Anyone ? After my bc two years ago where I had one biopsy three lumpectomies two mastectomies nipple reconstruction and nipple and aereola tattoos I started walking.—–down the hall at Columbia Presbyterian Hospital in New York City. There was a sign over the breezeway and it said Miracles Happen Here. That was what I was looking for after all of the surgery I had just endured. I would do it again any day in a nano second. Then I came home and started walking one block in my neighborhood taking my little beagle bella for a ‘potty” break. Then a lap around the track at our local Dietz stadium track wear the American Cancer Society Breast Cancer walk was held. Eventually I made it a mile, then two then three and my cancer free walking buddy said lets work up to ten miles. I thought she was crazy. Instead she had a plan to start hiking the Appalachian trail starting in Dutchess County New York for us. But most people start either in Georgia or Maine. Little did I know what I was getting myself into. Long story short we finished New York in October and we are trying to finish Connecticut in November. We are now hiking anywhere from 10 miles to 14 miles at a time. I don’t know if I’ll ever finish the full 2100 + miles but I am enjoying the journey When I started looking around your blog. I thought biking up Mount Hamilton looked like an amazing goal to put on my bucket list and then I found your sight where you biked around the world? in 2008. I am sooooo inspired by you and your husband and I had to blog to you immediately even before I read your entire blog. You are both on an incredible journey together and I just want to thank you for sharing bits and pieces of it with a fellow breast cancer survivor like me. You inspire me to live fully everyday but especially today. Thank you for sharing your journey. I’ll be back. I refuse to let one cell of my body negatively impact my view that you shared with me with your pictures. I believe our body can heal physically emotionally and spiritually. I choose to be completely inspired by you today. Thanks for sharing. Diana