First Day of 2017 - short but GREAT!!

[gardenmary]

So, I've been using my "crazy schedule" as an excuse to not go skiing. (HERESY!!!!)

But this past year has been one that has taken a pretty heavy toll on my health. I'm 56 years old. I'm now 5.5 years out from my breast cancer diagnosis, and 5 years out from my radiation treatment (I am now 5 years cancer free). That treatment was followed with a hormone-suppressing drug called Tamoxifen - and I had just about every single side effect one can have with the vile, evil stuff. I was supposed to take it for 5-10 YEARS.

Long story short - I lost muscle mass, strength, stamina, and I gained weight - even though I was eating healthy (not hard to do in Berkeley!), walking 3-5 days a week on the walk path behind the apartments in Berkeley, and schlepping up and down the formidable hill at seminary. Didn't do a damn bit of good because of the Tamoxifen. (I'm off it now, after my oncologist agreed it was worse than the disease, and already things are getting better.)

Anyway, I've been very hesitant to go skiing. I won't ski as well, I've told myself. I won't look decent, I'm overweight. I don't fit the "ski bunny" mold, even in anyone's twisted reality. And the lack of strength will probably mean that I manage to get hurt.

But one of my favorite authors, Anne Lamott, posted something last week that basically reminded me "if not now, WHEN???" And my good friend @mustski nudged me a little more. So - as my late husband used to say - I put everything in the "what the hell" department and pulled out the ski clothes.

OMG. They fit.

I put on the boots. They felt good.

I texted @mustski and told her I'd meet her today at a local mom-and-pop ski area called Snow Valley. I have skied with her and her family for 6 years now and they have always been the most welcoming and supportive folks.

I waxed my skis - always the best Zen activity - and set the alarm for zero-dark-thirty. (No, seriously, 2 hours before sunrise!)

When I got there, I got ready and got my ticket (half off! thanks SnowJam!) and headed up to the beginner bunny slope lift. (Cue the apprehensive music...) Now it's do or die. Off the chair lift.....and initiated the first turn.

You know that thing called muscle memory?

IT'S A THING. SERIOUSLY. IT'S A REAL THING.

I was fully expecting to get hauled down the mountain on a sled by patrol. But all those incredible lessons (thanks Stew Marsh!!!) have lodged deep in my physical self and it all kicked in. Within an hour I was skiing beyond ANYTHING I thought I'd be capable of on a first day with ZERO preparation.

My friend and her family are great skiers and that is one of the best ways to up your game - ski with good skiers. We had a fantastic long morning of run after run on all the open terrain.

Moral of the story? Don't underestimate yourself. Who the heck CARES what you look like. Get out there and have an exhilarating, empowering day. Believe in yourself! You can do it!

Hoping the weather is favorable for a repeat next week!

PS - the other moral of the story is if your doctor tells you to take Tamoxifen, tell them to go shinny up a tree. Worst.Drug.Ever.

 

[bounceswoosh]

Believe me, I don't look like a ski bunny. And I don't WANT to!

 

[mustski]

My favorite part of skiing has always been the company. As a Canadian transplant to SoCal, I had far too many years skiing alone. It was great to ski with you today! I love my ski friends. I think the first time I skied with you was shortly after you finished chemo! You are soooo much stronger now. Let's cross our fingers for none of the "R" stuff and try again for next weekend!

 

[gardenmary]

Thanks!!! I might, MIGHT head to Utah after my big interview on Thursday to celebrate. TBD. I'll let you know!

 

[ski diva]

You are a SKI DIVA, Mary! So glad you got out there and had a great day. You deserve it!

 

[Tvan]

What a great post, @gardenmary ! So happy for you!

 

[Jilly]

What a great day. Glad you got that out of the way. On to more!!

 

[SkiGAP]

Inspiring story!

 

[Little Lightning]

Believe me, I don't look like a ski bunny. And I don't WANT to!

And I look like a ski bunny, actually more like a kid, but don't ski like one.

Seriously, what you've accomplished is pretty awesome. Anytime our bodies betray us, whether it's illness, injury or fear it's hard to convince ourselves that we're getting back to normal. That naysayer of a mind can come up with a zillion excuses to convince oneself of failure. When we do challenge ourselves again the results can be so rewarding.

 

[badger]

Thanks @gardenmary for the update! I have been wondering about you, knowing you've had a very busy graduate program. Your experience is one that will surely encourage others to find their way back onto skis. Great to hear from you.

 

[Obrules15]

,

PS - the other moral of the story is if your doctor tells you to take Tamoxifen, tell them to go shinny up a tree. Worst.Drug.Ever.

Worst drug ever, except for the chemotherapy one has to take if breast cancer recurs, or the incredibly high doses of morphine one might have to take if cancer gets so bad it's eating away at your body.

You are cancer free at year five w/ likely a greater than 99% 5 year survival rate after taking 5 years of Tamoxifen. Why would you share that kind of advice with other women and maybe take away their chances of disease free survival.

Cancer is awful and it kills you, because of that cancer drugs are pretty awful because we think taking them is better than being dead. Tamoxifen and the newer drugs are anti-estrogens that prevent hormone responsive breast cancers from returning or growing.

I am so pleased you are a survivor, like my mother and my aunt. I am sorry you suffered through side effects of Tamoxifen, like my my mother and my aunt. I am happy you stuck to your five year Tamoxifen regimen, like my mother and my aunt because there's outstanding medical data that says it extended your life by a significant margin.

The current disease free survival rates for Breast Cancer are sky high in comparison to what they were in the 90's because of drugs like tamoxifen. Please, please, please be a little bit more careful in the advice you dole out so easily. You might cause someone to refuse to take a life saving drug.

 

[Gloria]

Thank you for posting! I am glad you were able to get out and enjoy yourself and thankful that you were in the company of a good friend. I know it can be tough to get back into the swing of things when you have stopped doing them for awhile. Making that first day happen can be tough. Hope you can get out more and more!

 

[bounceswoosh]

@gardenmary - when's your next ski day?

 

[gardenmary]

Worst drug ever, except for the chemotherapy one has to take if breast cancer recurs, or the incredibly high doses of morphine one might have to take if cancer gets so bad it's eating away at your body.

You are cancer free at year five w/ likely a greater than 99% 5 year survival rate after taking 5 years of Tamoxifen. Why would you share that kind of advice with other women and maybe take away their chances of disease free survival.

Cancer is awful and it kills you, because of that cancer drugs are pretty awful because we think taking them is better than being dead. Tamoxifen and the newer drugs are anti-estrogens that prevent hormone responsive breast cancers from returning or growing.

I am so pleased you are a survivor, like my mother and my aunt. I am sorry you suffered through side effects of Tamoxifen, like my my mother and my aunt. I am happy you stuck to your five year Tamoxifen regimen, like my mother and my aunt because there's outstanding medical data that says it extended your life by a significant margin.

The current disease free survival rates for Breast Cancer are sky high in comparison to what they were in the 90's because of drugs like tamoxifen. Please, please, please be a little bit more careful in the advice you dole out so easily. You might cause someone to refuse to take a life saving drug.

I should clarify: my likelihood of recurrence immediately post-radiation was extremely low - maybe 4%. Every person's situation and diagnosis is different and every person should always make these decisions on their own with their doctor. Tamoxifen was not so much a treatment for me as it was a hedged bet for improving the odds against recurrence.

What was honestly more annoying was that my surgical oncologist dismissed my side effects as unrelated to the Tamoxifen. REALLY??? When all this crap started AFTER the Tamoxifen? I had severe pain in all my joints, 24/7/365 (along with all the other side effects of the medication). I get the purpose of the Tamoxifen, but seriously - the cure was worse than the disease. I have what is likely permanent damage to my health because my oncologist apparently couldn't be bothered. She said more than once that it was my fault and that I just needed to lose some weight. Well, DUH. But everything that had worked for me in the past for that task was backfiring - I was GAINING weight. In the last few months, I've discovered that my polycystic ovarian syndrome (PCOS) is apparently a major player in all of this, and it's been known science for a long time, and she NEVER said a word to me about it. I am very, very angry about this.

If you've never spent most of your nights awake - not lying awake, but writhing in pain - you don't know what I've endured the last couple of years. It all stopped once I stopped the Tamoxifen. My point is not so much that I'm blowing off cancer treatment - I'm not. I'm sorry if it was interpreted that way. My point is that when I was having a very bad reaction to the Tamoxifen, that reality was ignored and I was brushed aside. My late husband and I had become experts in health care advocacy when he had cancer, so I knew what to ask and how to pressure. The fact that I was getting this brush-off from a female doctor was all the worse. She KNEW the interaction of Tamoxifen and PCOS was not likely to be good and she said NOTHING. I get why I needed to take the medication. What I didn't get was her lack of caring about the pain I was constantly in - she insisted it was all my doing after my radiation treatment.

Again - my cancer was extremely early and not particularly aggressive. In the cases where Tamoxifen is absolutely essential (as opposed to recommended) of course the parameters are different.

 

[gardenmary]

@gardenmary - when's your next ski day?

This coming Friday. At the moment it is raining the entire animal kingdom at my house, not just cats & dogs, and therefore the local hills may get as much as 4 more feet of snow. They've had 100+ inches this year and bases are 3-5 feet. This is pretty unusual for Southern California! My week is busy anyway so I'll hold out for Friday and head up then. Should be sunny, mid-30s.

 

[bounceswoosh]

This coming Friday. At the moment it is raining the entire animal kingdom at my house, not just cats & dogs, and therefore the local hills may get as much as 4 more feet of snow. They've had 100+ inches this year and bases are 3-5 feet. This is pretty unusual for Southern California! My week is busy anyway so I'll hold out for Friday and head up then. Should be sunny, mid-30s.

Excellent!

 

[Obrules15]

I should clarify: my likelihood of recurrence immediately post-radiation was extremely low - maybe 4%. Every person's situation and diagnosis is different and every person should always make these decisions on their own with their doctor. Tamoxifen was not so much a treatment for me as it was a hedged bet for improving the odds against recurrence.

What was honestly more annoying was that my surgical oncologist dismissed my side effects as unrelated to the Tamoxifen. REALLY??? When all this crap started AFTER the Tamoxifen? I had severe pain in all my joints, 24/7/365 (along with all the other side effects of the medication). I get the purpose of the Tamoxifen, but seriously - the cure was worse than the disease. I have what is likely permanent damage to my health because my oncologist apparently couldn't be bothered. She said more than once that it was my fault and that I just needed to lose some weight. Well, DUH. But everything that had worked for me in the past for that task was backfiring - I was GAINING weight. In the last few months, I've discovered that my polycystic ovarian syndrome (PCOS) is apparently a major player in all of this, and it's been known science for a long time, and she NEVER said a word to me about it. I am very, very angry about this.

If you've never spent most of your nights awake - not lying awake, but writhing in pain - you don't know what I've endured the last couple of years. It all stopped once I stopped the Tamoxifen. My point is not so much that I'm blowing off cancer treatment - I'm not. I'm sorry if it was interpreted that way. My point is that when I was having a very bad reaction to the Tamoxifen, that reality was ignored and I was brushed aside. My late husband and I had become experts in health care advocacy when he had cancer, so I knew what to ask and how to pressure. The fact that I was getting this brush-off from a female doctor was all the worse. She KNEW the interaction of Tamoxifen and PCOS was not likely to be good and she said NOTHING. I get why I needed to take the medication. What I didn't get was her lack of caring about the pain I was constantly in - she insisted it was all my doing after my radiation treatment.

Again - my cancer was extremely early and not particularly aggressive. In the cases where Tamoxifen is absolutely essential (as opposed to recommended) of course the parameters are different.

My biggest concern was that you were not specific about your denouncement of Tamoxifen and in the last sentence of your post you specifically advised other women to tell their doctor's no if advised to take Tamoxifen. That is not a responsible thing to do.

The issues you faced were very complex and I more than understand your frustrations with the system (more than you know) both my Aunt & Mother opted for mastectomies over chemo & radiation (primarily at my urging because I've seen the side effects of those and they are way worse than even the side effects you describe) and getting one of her oncologists to pay attention to her specific risk profile & oncotype was head splitting. It took multiple tries & two physicians armed with research to get that oncologist to see chemo was not indicatrd. Luckily we had chosen well, an academic medical center that had the background to understand that different cancer types behave differently.

Your specific side effects and drug interactions are not the norm and usually Tamoxifen is the least problematic of the cancer treatments, as I said I'm glad you beat it, I just don't want you to take away someone else's chance of doing the same. Not to mention PCOS makes it a special case. Intrinsically it causes a hyper hormonal type state and therefore Tamoxifen would have a stronger effect and because it's a hyperhormomal state it's also possible that it would have led to an increase in your recurrence risk.

So how do you really know the Tamoxifen was of no benefit. Low risk is not no risk, so for all your frustration it may be that it did it's job. My friend's mother had a low risk breast cancer and the second time her cancer reoccured her daughter dropped out of college for a year. The third time it reoccured her low risk breast cancer killed her. There are worse things than the side effects of Tamoxifen, even the horrible side effects you experienced. If you don't agree, that's fine, but make that explicit, that you'd rather be dead or coping with recurrance than dealing with the side effects of Tamoxifen.

I expect to joining the crowd soon as all of my female first degree relatives have had breast cancer and I'm very aware of the miseries..................but once cancer is on the table it's a new day and new priorities. Being alive will become more important than anything.

I know too many women who have died from this disease to denigrate any of the treatments available, I would hope you would respect those who came before you who didn't make it, and would have loved to have the chance to not have to say good bye to their families so early.

 

[Obrules15]

I should clarify: my likelihood of recurrence immediately post-radiation was extremely low - maybe 4%. Every person's situation and diagnosis is different and every person should always make these decisions on their own with their doctor. Tamoxifen was not so much a treatment for me as it was a hedged bet for improving the odds against recurrence.

What was honestly more annoying was that my surgical oncologist dismissed my side effects as unrelated to the Tamoxifen. REALLY??? When all this crap started AFTER the Tamoxifen? I had severe pain in all my joints, 24/7/365 (along with all the other side effects of the medication). I get the purpose of the Tamoxifen, but seriously - the cure was worse than the disease. I have what is likely permanent damage to my health because my oncologist apparently couldn't be bothered. She said more than once that it was my fault and that I just needed to lose some weight. Well, DUH. But everything that had worked for me in the past for that task was backfiring - I was GAINING weight. In the last few months, I've discovered that my polycystic ovarian syndrome (PCOS) is apparently a major player in all of this, and it's been known science for a long time, and she NEVER said a word to me about it. I am very, very angry about this.

If you've never spent most of your nights awake - not lying awake, but writhing in pain - you don't know what I've endured the last couple of years. It all stopped once I stopped the Tamoxifen. My point is not so much that I'm blowing off cancer treatment - I'm not. I'm sorry if it was interpreted that way. My point is that when I was having a very bad reaction to the Tamoxifen, that reality was ignored and I was brushed aside. My late husband and I had become experts in health care advocacy when he had cancer, so I knew what to ask and how to pressure. The fact that I was getting this brush-off from a female doctor was all the worse. She KNEW the interaction of Tamoxifen and PCOS was not likely to be good and she said NOTHING. I get why I needed to take the medication. What I didn't get was her lack of caring about the pain I was constantly in - she insisted it was all my doing after my radiation treatment.

Again - my cancer was extremely early and not particularly aggressive. In the cases where Tamoxifen is absolutely essential (as opposed to recommended) of course the parameters are different.

I should add that a 4% risk of recurrence means that 4 out of every 100 women in your situation will get full blown cancer again and it's possible that as PCOS as a hyperhormonal state could make it worse.

Also I've watched my father, my other aunt and my grandfather die of cancer. Yes, as bad as your side effects were there are worse. I couldn't even kiss my aunt on her forehead she was in so much pain.

You are so lucky, celebrate that!

 

[vickie]

I'll hold out for Friday and head up then. Should be sunny, mid-30s.

Ahhhhh, sunny and mid-30s ... ideal day! Hope you have a great time - and a nice mental break.