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Posts Tagged ‘mastectomy’

Peace and progress

Posted in Boston, Cancer, connections, family, Home, prayer, recovery, work, tagged , , , , , , , , on May 24, 2012| Leave a Comment »

Grampa is at peace. We lost him the other night, which was absolutely what was best for him, given the circumstances. It’s a small comfort to those of us left behind, as we would prefer to cling to him here, but that’s not fair, either. So we let his body go and all keep with us the pieces of the man who helped mold each of us in different ways. For me, I will always remember the grandfather who bounced me on his knee chanting about the duckies; introduced me to my love of theater; was my first minister; spanked me, my older brother and cousins when we got into mischief; took me to the top of Mount Washington; and welcomed us at the Cape. He furrowed his brow as much as smiled, and we loved and will miss both.

I apologize to all those who’ve commented on how silent I’ve been lately. It’s really been an overwhelming two weeks – in a totally different way than the preceding ones. From Mother’s Day when Grampa had his stroke, we’ve spent at least part of every day at the hospital, luckily surrounded by family. Tara rightly pointed out that one small silver lining was the timing of all this, in that at least with this happening during this point of my recovery, I was able to be there for him and my family, which certainly helped me. (None of us ever thought we would – or wanted to – know the Longwood district and all the hospitals so well. But we’re constantly thankful to be in Boston with some of the best hospitals in the world!) Now it’s planning and preparation for his service this weekend (details here). I’m doing a write-up on him for the funeral home’s web site, but struggling: it’s the hardest thing I’ve ever written. And I am beyond touched that Ginny and the rest of the family decided to direct people to donate to Dana-Farber for breast cancer research in lieu of flowers.

At the same time as all of this was happening, I also was running across the street from Beth Israel to Dana-Farber and Brigham and Women’s for my appointments. I had my first physical therapy (PT) appointment, which both felt like progress and hurt. I’ll continue PT twice a week for the next few weeks, in addition to my exercises at home. Also in the hurting category: I had my first tissue expansion injections with the reconstructive surgeon. The four giant syringes intimidated me at first (uh, do I really want boobs that bad???), but the process was fine, not nearly as bad as I expected. (I closed my eyes, although my mom was brave and watched.) Mom warned me not to get too excited about not hurting, as they gave me numbing stuff first. And boy was she right! I am still in pain that almost rivals the original surgery – no wonder he’s spacing these injections out to every four weeks! The highlight for me (in addition to now having slightly larger mounds where my breasts used to be) is that I am tentatively cleared to go back to work on Monday, June 4 – I really can’t wait. I will just need to take time off as necessary for all the appointments/additional surgeries and for when (if – as I am still dreaming I won’t be) I am sick from the chemo, which will now begin on June 12.

Also this week, my Dad and Maggie surprised me by driving up from Tennessee (where they went after I left them in Florida). My father was close to my grandfather and wanted to be here for him, as well as for me with all of this fun cancer stuff, and to help my 100-year-old Nana with things around her house, now that she is (momentarily) willing to accept a bit of help – boy do I know where my stubbornness comes from! (As well as some of the strong, independent woman DNA, although I am lucky to have that on all sides of my family!) It is comforting to have them here – and simply always good to see them, as it was when my brothers were both here last week.

This has definitely all been a reminder on the importance of family – including your closest friends who you consider family. Nothing is more important than spending time with the ones you love. You may not always see eye-to-eye, you may have knock-down, drag-out fights, you may not always be able to stand each other. But when it matters, you’re there for each other. And hopefully in the days in between you spend time together. It doesn’t matter what you do, as long as you’re together. Some of Nick and my favorite times were sitting on the deck at the Cape, simply talking with Grampa and Ginny and whatever aunts, uncles, cousins were around. Those are moments we will always treasure, and wouldn’t trade for the world. We love you Grampa , and miss you so already.

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You’ve gotta do what you’ve gotta do

Posted in Cancer, Decisions, family, prayer, tagged , , , , , , , , on May 16, 2012| 6 Comments »

In a way, my grandfather and I are in somewhat similar places. We both have to do things we don’t want to do in order to live. Of course, right now, he doesn’t have any choice in the matter. I don’t really feel I have a choice, either, although I at least am fully aware of what is happening to me. With Grampa, we’re not really sure how much he understands.

It is still early, so soon after the stroke that they’ve classified as major/severe. He has had many ups and downs in the few days: shown signs of understanding by attempting thumbs up, wiggling his toes and nodding when mom asked if the shoulder that he fell on hurt; had some heart issues; now has pneumonia, which they are controlling; and exerted his frustration by one day pulling the tubes out of his mouth/stomach and the next pulling out his catheter. Sometimes he looks at us like what the heck are we doing, prolonging his life by letting them do all this, but we’ve told him, he’s really breathing on his own and we haven’t done any special life-saving measures, because we know he doesn’t want that. We just want what is best for him, and if he is here, to be comfortable and to have hope that he can completely come back.

It will be a long time until we know for sure the extent of the brain damage, which they say could be extensive. He doesn’t always respond in the same way I mentioned before, but we know sometimes it’s just Grampa – if he doesn’t like a witchy nurse or uptight doctor, he won’t do a thing for them, and then when someone he likes asks him to do something, he tries and sometimes succeeds! It is all in God’s hand – and up to Grampa’s will. So we take it one day at a time, and they tell us that it could be weeks, even months like this. We have a big family, many who are here (I’m writing this from Beth Israel) every day, and we will soon probably start to rotate so someone is with him every day, but not everyone. We are thankful my older brother Steven, who lives in Florida, has joined us for a few days. He is a respiratory therapist in a trauma center and has been able to translate quite a bit for us – and catch some things others haven’t.

For me, I thought the worst was over, but now I’m thinking I’m wrong. At my appointments yesterday (how convenient Dana Farber is across the street from Beth Israel?) we learned that I am not quite as lucky as I thought I’d be. I thought cutting off both my breasts would do the trick. And it did, from what they can tell. However, because of the cancer found in my lymph nodes and my being young for this, I need to have all the follow-up treatments: chemo, radiation AND tamoxifen. Ugh.

I am not happy, but I’m also not about to fight it. I figure I have done everything so far to make sure I never have to deal with cancer again, I am not going to stop now. I’ve already begun regaining my strength – the daily hospital visits to see Grampa and family have helped both my mind and body. Next Tuesday I start physical therapy to really get full range of motion back in my arms, and that day I also meet with the reconstructive surgeon and may begin the expansions, depending how I’m healing (although breast surgeon says it’s looking good).

The following Tuesday the real fun will start. Chemo. That will be most of the day, and then I will have one day of chemo, every three weeks for four rounds. After that, I will have a few weeks off and then start radiation, Monday through Friday, for five weeks. And then Tamoxifen for five years. I know I said it before, but ugh.

What I understand from others is that chemo won’t be too bad at first, and then will get worse each round. The first time I may be sick for a day, the second round for two or three days, the third round for a few days to a week and the final round for a week or two. But everyone is different and I already have prescriptions for meds to combat the nausea and other bad side effects. What is really hitting home is the fact that I will lose all my hair – probably about a month from now, around two weeks into treatment. Argh! It took me so long to grow it, and I actually like it now. Not fair! But what among this IS fair?

I guess what is fair is that I get to live. I was lucky enough to find the lump, pretty much just in time before it spread further, and so what, I had to have a bilateral mastectomy? I do get two new ones, eventually. So what that it’s painful, I’m limited for a while and I have to go through PT? At least I’m young and strong enough to  push through it. So what if I have to go through those treatments and lose my hair? They will eventually be over, there are drugs to combat the side effects and my hair will grow back. And I actually, unlike Grampa, get to plan this all out and understand what I am facing. So I actually think I have a lot to be thankful for…

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Sneaking a peek

Posted in Alone, Cancer, connections, Denial, Dreams, lymphedema, work, tagged , , , , , , , , , , on May 14, 2012| Leave a Comment »

Saturday, May 11, 2012

I looked. I looked because I was actually scared not to. I have been having wicked insomnia lately. Even if I don’t take a nap in the afternoon, or have caffeine after 7 p.m., and even limit myself to one diet coke in a day and only decaf tea and go to bed by 10 p.m. AND take my pain meds, I’m lucky if I can get a wink of sleep by 3 a.m. I’m usually exhausted and can’t actually DO anything except lay there, but my mind will not turn off, no matter what I do. And when I finally do nod off, I have some crazy, often disturbing dreams.

Last night it was that the wounds on my chest began to open and come apart. They are glued together – there are no stitches. Crazy, huh? It all hurts so bad, my entire chest, that I’m not sure I would know the difference if they were starting to come apart unless I look. And my mom, the only person I’d ask to check for me besides the doctor, had to go to work, so she’s no longer with us at my apartment any more. So it was up to me.

I did it a bit sneakily at first. I went in the bathroom, distracted myself for a few minutes like the last time, and then stood in front of the mirror. Slowly, I pulled one side of my tank top down, just enough to see the wound (too early to really call it a scar yet and I can’t think of another word for it, although I’m sure some of my writer or medical friends will come up with plenty – probably glaringly obvious – ones).

It actually didn’t look too horrible. By doing it this way, I could fool myself into thinking that this was just a cut across my breast and that the rest of it – nipple and all – was just below, under my tank top. That side hadn’t opened so I pulled it back up and went to the other side and did the same thing. Nope, that one wasn’t open and oozing either, and appeared to be as good as could be expected, although that will be confirmed Tuesday by the doctors.

To reward myself for facing my fear, Nick drove me to Bliss Spa at the W Hotel, just across the Boston Common – somewhere I’d typically yell at Nick for driving to because it is so close – for a manicure. I’ve never been there before because it’s so much more expensive (double what I normally pay), but I went to the one in London and know that they are super sterile and careful, and ask clients every visit all about any recent surgeries, prescriptions, etc. So I knew my right hand would be safe there. You see, this is my new world: for the rest of my life I have to be super careful with my right arm, due to all my lymph nodes being removed and the risk of lymphedema, for which there is treatment but no cure. (I will go into all that more in a future entry, I am sure, but won’t bog down this one with the details.)

I had a relaxing time, and had just a few minor amendments to my mani to baby my hands and reduce the lymphedema risk, such as no hot treatments on that hand and extra careful cuticle treatment. Then I called Nick and told him not to worry, I could make it home, the short walk across the park. Sure, I can! It is on this trek that I realize:

Things that Suck

  • That it takes all my energy to walk across the Boston Common carrying just one small, near empty pocketbook, because I changed it out and emptied it before surgery, knowing I wouldn’t be able  to carry one of my normal size and weight.
  • That I cannot take my long sleeve top off and just wear my tank top on this beautiful day because I haven’t put the now minimum requirement of SPF15 on my right arm, chest and face (another lymphedema prevention requirement).
  • That I have to find a bench to stop and sit on at the end of the Common to rest before resuming the remainder of my short journey home, just down Charles Street.
  • That I can’t buy a lemonade because I am alone and know I can’t carry it AND my purse.
  • That I couldn’t do a damn thing  if someone came along and snatched said purse because I am currently so freakin’ weak. I know I wasn’t Ms. Muscles before, but I always thought I could put up a decent fight (thank you London self-defense classes) should anyone try anything. Now I can barely lift the stupid light pocketbook!

But I also remind myself how lucky I am. That this pain will eventually subside. That my strength will return. That I will be able to walk and run and carry heavy purses and defend myself again. There are millions of people in this world who cannot say that. I think of the people with rare diseases who my company makes treatments for, such as my dear friend Monique who has Pompe Disease. She is a fighter, who will battle the disease for the rest of her life. I read on her blog M.E.G.’s Confessional about what she goes through on a daily basis, and I know I really have nothing to complain about. She is also one of the strongest women I know, a constant source of inspiration, always sharing the positive, educating others on Pompe Disease and campaigning for treatment all over the world, including recently in New Zealand. It’s from women like her that I gain my own courage and strength, and am reminded not to take anything in life for granted!

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