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Posts Tagged ‘diagnosis’

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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I feel like I’m jumping into the middle of the story, without sharing the beginning (the whole last week or so since surgery), but this is the first time I feel up to being on the computer and I feel I need to jump to the punchline: Dr. G just called and told me I’m cancer free! Ever since I woke up from surgery and was told that they had to take all of the lymph nodes in my right arm because they detected some cancer in one of them, I (and all around me) have been holding my breath, waiting to hear if it has spread and if … well, you know. But it turns out that it was only in two of the lymph nodes and so they caught it before it spread and there are clear margins around where the two lumps in my right breast were. Hence, the giant exhale!

So now everyone (including me) is asking: what does this mean for treatment? Dr. G said he is not sure, as he leaves that to my oncologists, who I will see on May 15. They may want to be extra cautious, since I’m ‘so young’ and still do wither chemo or radiation and/or tamoxofin. Oh well – better any of those than more cancer.

I am going to sign off for now – just this bit has made me tired and I need to stay awake for the fabulous celebration meal Nick and Alivia are making me. But I have to say everyone has been beyond incredible to me. Mike has been by my side practically every second, taking care of me (and thus, my mother, too) and constantly reassuring me that no matter what everything will be fine. And he’s been right so far! And mom and Mark and Nick and Alivia have joined him in alternating between keeping me sane and calm, and laughing and crazy. And Tara and Tina helped keep everyone informed, as well as kept us company in the hospital. And I can’t believe all the gorgeous flowers, cards, texts, e-mails etc. Thank you to everyone for all the prayers, love and support. I know it was all of the positive thinking and prayers that scared the damn cancer away! So I couldn’t have done it without you! xoxoxoxo (And I am sorry I haven’t really been up for talking or texting or anything – I’m so achy and the meds make me a bit loopy and tired, but I hope to be back to myself soon and also promise to fill in more of the backstory on here soon…)

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Another perspective

To help me on this strange new journey I’ve been forced to take, my good friend Vicky took the time to share her own cancer story. I am sure you will be as inspired by her and her family’s strength and courage. She was just 19 and was giving birth to her baby when the cancer was discovered. Read more here: http://mycrazylife37.wordpress.com/2012/04/02/reflection

I am still in awe, and so thankful you are here today, Vicky! xoxo

 

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