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Archive for the ‘Denial’ Category

Sinking In

Posted in Cancer, Decisions, Denial, Discovery, family, lymphedema, Planning, recovery, tagged , , , , , , , , on June 9, 2013| 4 Comments »

So the disappointing news about the surgery wasn’t the worst thing that happened last week. In fact, my conversation on Friday with my physical therapist put the one with my reconstructive surgeon to shame.  It’s taken me until now to digest it all – in fact, I don’t think it’s really sunk in yet, but I decided I need to write about it to get it out of my system and start the new week fresh.Long story short: she told me that I am supposed to wear the damn sleeve and glove every day for the rest of my life. Yes. Every. Single. Day. Forever. You can imagine my response. In my head: F@$% that! In reality: “You’ve got to be kidding me?!” Her response? “No, I am completely serious. You’ve see what happens when you don’t wear it – the swelling comes back. You need to wear it to keep the lymphedema under control.”

The miserable glove and sleeve

The miserable glove and sleeve

She went on to inform me that while she “didn’t want to scare me” if it got worse, she and I would become best friends because we’d need to go to wrapping in which case I would have to go there every day for about two weeks, 7-8 hours a day to have my arm wrapped the entire time. You’ve got to be kidding me. Frankly, this is all way worse in my mind than cutting my chest off.

So every day, must do the massage, and the exercises, and wear the sleeve and glove. Ugh. I honestly can’t comprehend this right now. Just when I think I get to go back to being somewhat normal. I just want to scream.

I came home rip-roaring mad (it didn’t hurt that a family member had called and given me other disappointing/frustrating news), and told Nick all about it, ending with, “They expect me to wear it every day for ever – I don’t think so!!!” (Maybe there were a few bad words mixed in there too…) And once again, Nick just looked at me and said, “Mom, don’t be stupid. If it’s going to help you, you do it.” Ugh. When did he become the parent?

I know logically that he is right. But I don’t want to. I hate the sleeve and glove. They’re grungy even though (or because) I wash them. It’s summer and they’re hot. Mom is going to try making some lightweight, fashionable sleeves to go over the medical sleeves (which are really expensive or I’d get all different ones like those from Lymphedivas). And they make it obvious something is wrong with me. People are always asking me now what the sleeve and glove are for, and because explaining what lymphedema is can be confusing, I just say “cancer related – my arm swells.” And it used to be when they would ask how long I have to wear it for I would say “just a little longer.” Not any more…

So I need more time to let this sink in. I’m not going to say I’ll wear them every day forever, but I won’t rule out wearing it the majority of the time. We’ll see. I have a lot of research to do…

 

 

 

 

 

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Facing Cancer

Posted in Boston, Cancer, chemotherapy, connections, Denial, Discovery, family, hair, Planning, recovery, tagged , , , , , , , , , , , , , , on April 10, 2013| 2 Comments »

It worked. My determination to look forward and focus on the future really did help to pull me out of my funk and get me back on track. But what I also realized was that I couldn’t keep (and I can hear certain people snorting at this even before the words hit the screen) burying myself in work and denying anything is different. So I decided to finally – one year later – face cancer.

Just after my last blog entry called Facing Forward, I was on Dana-Farber’s website and found that a new session was starting called – ironically – Facing Forward After Breast Cancer Treatment. As you’ve probably figured out, while I love talking to people about their problems and helping them figure everything out, I’m not the biggest fan about talking to others about my feelings, especially if it could bring tears. But I realized that if I’m ever really going to move forward, this could really help. So I went.

It was the first time I’ve ever been in a room where the vast majority of women had hair practically the same inch or so length as mine – made me smile! As did hearing why these sessions were created: “Life as you know it is changed. You’re vulnerable. You’ve lost some control. You have a sense of time being limited.” Yup, yup, yup, yup. “During treatment you’re busy, focused on fighting.  Then it all stops. The transition can be very difficult. People assume since you’re done with treatment you should be ready to move on. And you feel guilty for not being there yet.” Exactly. Clearly I was in the right place.

It was explained to us that this is a “psycho education group.” So not a straight support group exactly, but a combo with expert speakers, the first being a medical oncologist. You would think after all the time I’ve spent with doctors during the last year that I would know it all – but I learned several new things – and felt good that I was able to answer some questions for others and help them, too. Some of what surprised me, I think I have heard before but probably just didn’t want to believe – or hoped that I’d be the exception. Not seeming so… As many of you know, I’ve been frustrated because I’m not back to where I was running-wise. Well, one thing I learned was that fatigue typically lasts about two years after treatment. Two years!!! So I guess my slow three miles (more walking than running), three months our of treatment, is better than nothing. You know what else can last two years? The neuropathy – the numb tingling feeling in my fingers and feet. I’m so sick of that – but guess it may be around a while longer…

But I’m here. And I’m basically healthy. And I have the best friends and family in the world. And I love my job. So I’m happy. And thankful. And I’m on the right track.

So I didn’t stop there. On Saturday, I took another step: I went to the Young Adult Cancer Conference at Dana-Farber. And I was really glad I did. More than the sessions, it was meeting other people around my age who have faced (or are facing) cancer, that made it such a worthwhile day. Everyone has a story, and they are all so compelling, no matter how straight forward they are. Kicking off the day was Mike Lang, a cancer survivor who, with his wife Bonnie, has completely transformed his life to help others facing cancer by taking them on adventures through Survive and Thrive Expeditions, as well as helping them tell their stories through movies, like Wrong Way to Hope. He shared his amazing story and clips from his latest venture: Valleys, which you can watch on Huff Post – Generation Why. Try to watch any of his work without shedding a tear – I dare you! It is so raw and true – we can all relate. What I really love is his motto: Reflect. Refocus. Rebuild. Live. Yup – that is exactly what I am doing!

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Back to (Radiation) Reality

Posted in Boston, Cancer, chemotherapy, Decisions, Denial, hair, radiation, recovery, work, tagged , , , , , , , , , , , , , , on December 10, 2012| Leave a Comment »

For about two weeks life was almost normal – no treatments (just visits to the hospital), work five days a week, some of the chemo side effects fading and my hair (slowly) growing back. I felt myself slipping back into the good old denial and fooling myself that cancer doesn’t exist in my life. But starting tomorrow, it’s a new reality: radiation.

Just like with the chemo, it’s been a bit of a crash course in radiation. I admit I haven’t exactly been paying as much attention as perhaps I should have (part of the denial thing), but now I’m cramming. The folks in Radiation Oncology at Dana-Farber are – like everyone I’ve encountered at Dana-Farber and Brigham and Women’s – great. They talk and walk you through it all so even those of us who aren’t too medically inclined have a clue what’s happening. I had the mapping session where they figured out the treatment field (on me) and gave me six tiny tattoos to help them correctly position me at each appointment. Then on Friday I had the dry run, where they took x-rays to make sure they got the mapping right, and walked me through what will happen for each of my next 25 visits.

Radiation Therapy (From the Breast Radiation Guidelines sheet from Dana-Farber): Radiation therapy is a painless treatment, similar to an x-ray. It uses high-energy x-rays to damage the DNA of cancer cells so that they are unable to repair themselves. Radiation also affects normal, healthy cells. Unlike cancer cells, normal cells are able to recover from radiation damage.

So starting tomorrow, Monday-Friday for 25 days (except Christmas and New Year’s Day) I’ll end my work day by running over to Dana-Farber for radiation. Several friends have given me tips on getting through it, and I am hoping to sail through. Then reinflation, a few months of rest, surgery for the implants, nipples, more tattooing, and then…

Tamoxifen. You may have heard the news last week: the results of a big study were just revealed and it determined that 10 years of tamoxifen is better for life expectancy than five years. Of course. That’s just my luck – just when I thought it couldn’t get any worse! So frustrating…

But at the check-up with my oncologist Friday (well, substitute oncologist, as mine just had a baby – her first, yay!), she said that I shouldn’t worry too much about it right now. A lot happens in the medical field in five years, and by the time my five are up, who knows what the recommendation will be. With my luck it will be to take it forever, but whatever. We’ll see.

There is some good news. I get to have the port taken out of my arm soon, which will be wonderful. And the best news of all: I ran today. Well, that was preceded by some not great news. I asked the oncologist when the numbness and tingling in my feet, legs and fingers will stop and she said it could be six months, a year or even never (although that’s rare). I had been waiting for my feet at least to be normal before getting back to running, since I’m such a klutz anyway. But there’s no way I’m waiting that long – I can’t stand being this out of shape, and want my clothes to fit right again. So this morning I went for my first run in practically forever.

I actually cried (happy tears of course) as I walked into the cool air in my running gear. It felt so good to get back out there! Of course, that only lasted a short time. It was like I’ve never run before. I was only doing 1:1 intervals and I was hurting by the time I hit a mile. I only did one more because I had a pain in my side and felt like I was going to throw up. (So pathetic how out of shape I am…) But I was proud I didn’t fall and two miles is better than none. It’s a start.

And tomorrow – uh, today, as I just realized it’s after midnight – is another start. Radiation. And it will be fine. I got through chemo just fine and I can get through this.

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