Coping After Treatment - Summer 2013

Paula

you changed your picture - very nice with the hat!

It's right side up for me, Paula. :-)

Jennie & Honeybair.....Thank you both. I forgot to say about my friend who died from metastatic lung cancer...she was NOT a smoker. It was genetic! My RO told me, she's seeing more & more cases of lung cancer in non-smokers.

Blessings

Paula

BayouBabe~~There is so much in our lives that could be responsible. Sometimes I don't think it matters what we do to protect ourselves. So many ladies on BCO have said, they always ate right, kept their weight under control, exercised, didn't smoke or drink, had no family history, yet here they are.

All the pollutants and chemicals in our food & water, in our air, cleaning products, beauty products, are just a fraction of the causes in my opinion.

Blessings

Paula

In my personal case, on top of all the other bad stuff around us, I believe stress was a major factor for me.

Since 2008 my DH fell off the wagon after 12 years sober, my beloved son, who has dealt with major health issues since age 6 when he was dx Type I Diabetic, was in 2009 dx with HIV, and 2 weeks after that my favorite aunt fell in her home and suffered a severe head injury. She couldn't walk or take care of herself after that so for over 3 years (until her death last summer) I cared for her in my home..changing adult diapers and all. I was so busy taking taking care of, and worrying about others, I forgot all about me. I was 3 years late getting my annual mammogram.

Blessings

Paula

I had a whole huge reply that I've since deleted. I'll try for the short version.

I am mostly satisfied with the care I've received. Some (and I'm glaring at a particular person) friends have been wonderful. My partner has been incredible.

Chronic pain is nothing new, thanks to arthritis. Still, the words of people here were helpful, in that they helped me learn that there can be many kinds of chronic pain. Having learned to deal with one doesn't mean I'm dealing well with another.

My pain seems to be worsening. There was the initial pain of surgery & recovery. Then, the initial pain eased but another sort of pain - associated with rads - kicked in. In the time since rads (last rads 8/17) I have been feeling better but in more pain, if that makes sense. I am back to carrying weight during the day (10+ pound school pack) for more walking (the school pack, for 2+ miles) than I've been doing. However, as a hiker, these distances and weights should be well within my capabilities. And yet, I wake several times a night with a lot of pain - my hands are both numb and fiery. I don't think it is LE since I'm part of an LE study, but I can't help but worry.

My skin also seems to be worsening. Through rads, I had no major SE's. My skin got the sunburned look but remained entirely intact. In the 6 weeks since, the skin in the rads field has been peeling like mad and has been super-sensitive.

I don't know if the super-sensitivity correlates with the pain. I find touching the skin in the rads area to be very irritating. And yet, touching these areas doesn't feel painful. The skin, intact during rads, has been peeling in the weeks since. No full thickness wounds, so that's good.

As for probabilities, I have been a mostly L-O vegetarian for my entire life, and vegan for the past several years. I am athletic (running or walking at least 5 miles per day) and very health conscious (thank you, mom) in terms of eating whole foods and exercising daily.

But yeah, lucky? Still not really.

My poor dog today... I took some dog-shaming pictures (thanks to him chewing all around the heel of a sneaker, rendering it unwearable. Then after our walk, I decided to give him a bath. He was vigorously toweled afterward, and periodically in the 3 hours since, and yet he remains damp and shivery. My dog dryers are packed for our anticipated move, so I keep trying to settle him under a blanket. How can I publicly shame him for the sneaker chewing when I'm in the midst of damp chilly dog guilt? But we did have a good walk this afternoon.

My skin seems finally to be getting better in terms of the peeling decreasing. Still super-sensitive in some areas. I'm still waking up with numb/fiery hands and sometimes arms. Moving around helps with that.

I don't know how much of my negative attitude is associated with taking the tamoxifen. I'm (again, should feel lucky) not experiencing SE's except for some initial bouts of nausea. Mostly, I hate that taking it every night forces me to think about my condition every night - and will continue to do so for the next five years. I have to find a way to get over this. The tamoxifen should be a good thing since it reduces my recurrence risk. I don't want to be negative about it. And yet, it seems I can't help but be negative about it, which leads to feeling negative about many others things. And then feeling guilty/badly for not being more positive - I have to find a way out of this negativity.

-Lenn13ka - I am so sorry you're having to deal with lymphedema. That's been one of my worries. It's great that you're in PT (what I'm going to school for!) and I hope that's helpful.

-Patricia - I'm not much of a drinker. My medical care team have each assured me that 3-5 drinks per week with no more than one per day shouldn't be a problem. Still, Love's Breast Book implicates alcohol as a significant risk factor, so I've been keeping it to a bare minimum.

-Paula - yes, stress. I quit a successful career to go back to school for something completely different. I then lived away from home the last school year while I was getting diagnosed and had to deal with the crappy student health insurance while trying to get diagnosed and get a second opinion. I think stress can be a major factor in health issues and I was under a pile of it. I'm sorry you were too.

The funny thing about stress is learning to deal with it. My main stress outlet is running which isn't great right now what with not being able to wear a bra. I signed up for a relaxation class - and was then stressed about the poor quality of the class!

Anyone have some favorite - and effective - ways of dealing with stress?

Good morning wonderful ladies! A number of you are ahead of me in treatment. I've completed nasty chemo and begin radiation therapy tomorrow. I'm convinced radiation will be easier than chemo and have a giant bottle of aloe gel.

Question for you wise women: I have neuropathy in my fingers and toes. It's not painful, but a real bother/distraction and interferes with some activities. I received both taxotere and carboplatin and believe either or both could have been the culprit. My MO says that it may take a few months before we know if it will resolve itself. I'm a month out of chemo and it seems to have stabilized and not improved. Do any of you have thoughts on this? Any experience where it's taken a few months to go away? Has anyone tried acupuncture or anything else that helps?

Much love to you all,

Gracers

I am noticing very achy joints in my knees,shoulders and hips, I'm thinking it has to be the Tamoxifen

Lenn - people seem to quickly forget - or they don't want to mention our ordeal incase we forgot.. like that will ever be possible!

IamNancy, love your new pic! Look at the head of hair you have, beautiful!

Lenn13ka, it's funny you mention this. Now that I am finished treatment but am left with lots of chemo related aches and pains, plus what seems to be radiation induced (?) frozen shoulder, I am at a loss as to what to say when people ask me how I'm feeling. My DH doesn't even ask me anymore-he figures I'm done treatment so I'm back to normal. I have great issues sleeping on top of everything. I find I stumble over the "I'm feeling fine" reply because I'm really not. I do realize that this is what everyone wants and expects to hear-but I would really love to tell them the reality of what I'm still going through.

Thank you for letting me express that and if anyone can come up with a soft version reality reply, I'd love that!

I hope everyone is doing well.

slv58 - Thanks! I just want to have the nerve to put the wig away and so far I feel nervous about it.. my highschool reunion (43 yrs) is this coming weekend and I have to decide if I feel confident enough to go wigless

Hi All, So good to be able to vent. And Lenn, I'm absolutely hearing "Gee, aren't you glad that's over?!" even from doctors *grrr*. My boss wants to know when I'm coming back to work, but even just taking a shower and washing my hair makes me so tired I have to lie down for an hour.

Some things we cover in the group are related specifically to this. I highly recommend the book we're using. It's called Picking Up the Pieces and is designed to help us put our lives back together after surviving cancer (treatment). I'm the most recently "recovered" and several other women are still dealing with difficulties up to 2 years out. I really think this book helps lay the framework for how I will be putting my life back together. It will be forever changed, but I get to figure out how it will go and make the best of what I want in the rest of my life.

If anyone is interested and can't find it from the title, let me know and I'll get off my behind and go look at the authors (two women-if that helps).

Best to you all~

Mum