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Chemo week eight wasn’t fun, but the infusion was the least of it. Honestly, I probably shouldn’t be posting right now because I am on painkillers and they say I’m not supposed to ‘drive, operate heavy machinery or make important decisions.’ I think that basically means you’re not in your right mind – and I do know that is true, and figure you probably shouldn’t write things for all the world to see when you’re like that, either. Oh well – I am anyway because I feel guilty not – so many people have been checking in on me because they haven’t seen a post yet and I feel bad having anyone worrying about me… instead you get to read my rambling! That said, I’m going to keep this brief, so I don’t say anything I’ll regret in the morning.

Tuesday (was it really only yesterday?) started at 5:30 in the morning, rousing mom and Nick so we could get to Brigham and Women’s Hospital and I could be the first in for the port. Long story short, I was dozing on the operating room table when I was woken and asked if it was ok for them to put the port in my arm rather than my chest as they were concerned about the placement of the tissue expanders. Since the last thing I want is one of those popped (I have a friend with implants and one has deflated – not fun), I said of course. Whatever they deemed best.

The next time I woke up we were done and I was in recovery with mom and Tina. I don’t remember much except that all was fine with the world (yes, I was heavily medicated), I got dressed and they wheeled me on over to Dana-Farber for the infusion. They used the port for both taking blood to do my labs and the infusion, so it was already paying off – no routing around my poor veins any more. The redness around the port was definitely growing, though, and the nurse drew a circle on the clear bandage, saying if the red spread outside the circle to come back.

Home we went and as the evening went on and the meds wore off, the pain increased… and this morning the red was well beyond the circle and felt much worse than the ‘slight discomfort and tender’ that the discharge papers said I’d feel – I couldn’t even put my arm down at my side! I called and it was back to the hospital for us…

Luckily it isn’t the type of red they’re concerned with: the doctor said, in fact, that most of my upper arm will turn red and then black and blue (note to self: may want a dress with sleeves for CMAs), and that it is only ‘infection red’ (didn’t realize it was its own special shade) and warm to the touch that they worry about. He also said it should be better by next Tuesday for the next infusion, and it’s not so bad for most because they can take Tylenol or ibuprofen. I can’t because of my liver, so he said to stick with the painkiller I was prescribed – but I can’t take that and go to work. So I get the choice of comfort at home or pain at work – great.

So for the rest of today I chose rest, and tomorrow it will be back to work, and I’ll grin and bear it. I hate to say it, but I am getting so used to hurting that I don’t really care. I don’t think there’s been a day since the surgery in April that something on my body hasn’t hurt, and the aches increase every day. I am holding out hope that it all really does subside shortly after the last treatment.

Overall, though, I am just thankful that it hasn’t been worse. That I can still get up and out of bed every day. That I can still work. That for the most part – other than the aches and pains and cringing every time I look in the mirror and see my mostly bald head  and the weight I’ve gained – I’ve been able to maintain relative normalcy in my life throughout all this. And that I will live and, as so many keep reminding me, someday this will just be a chapter in my life rather than the main storyline…

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This was more than just a vacation from work. I thought of it as much as a vacation from cancer as from anything else. I figured since it was my good week – the one just before my next (third) round – and when I wouldn’t have to be taking any meds, I could just forget I was sick for a little while (once a procrastinator, always a procrastinator). But you know that didn’t happen.

A bit of background: we are down the Cape for one week, with about 25 different family members from all sides, staying at three different houses all on the same street we’ve vacationed on every summer since I can remember. Family of all ages has come from Florida, West Virginia and all over Massachusetts. It’s great, like the Waltons or the Brady Bunch. I love it!

So I thought I could pretend all was normal and just feel good and enjoy not being at work AND not being sick. But as soon as I got here, the little reminders started sprouting up. Like others seeing me bald for the first time. And the kids wanting to see my wigs. And having to wear more sunscreen than I’m used to – and being somewhat cautious with the sun in general. (No, I didn’t want a burnt head!)

The biggest, and most difficult for me (and my mother, who was cognizant of it even before I was), was the fatigue setting in. At first I attributed it to the sea air and the sun. But no, it’s the cancer/chemo. Having to take naps and go to bed earlier than normal (although I suppose most don’t see 11 as early), and sleeping in later than most, and later than normal for me. And the hardest of all: getting winded after just a short time running. I can still do the three mile intervals, but am winded through most of it. It’s not a breeze like it used to be – and I hate that! I had wanted to work up to more again, but I think that’s going to have to  wait until after chemo is done.

So I’ve accepted the fatigue and being bald. It doesn’t mean I have to like it, but I will not fight it. And we’ve been having fun with my bald head – Nick even shaved the stubble for me the other day, with all our family sitting around us and chiming in with tips, like a barber shop. And I’m starting to try out the wigs on short shopping trips or out to dinner, just for fun.

Some people have gotten pretty used to me being bald. Nick’s even said he likes it now. I still have a hard time looking in the mirror, but otherwise am fine with it. Others, I know, will never get used to it or even be able to really look at me. Not just because I’m bald, but they can’t handle seeing me sick. It’s hard, I know. But I also know that if they can’t get past the outside and be there for me through this, maybe they never really loved me in the first place and we’re both better off. I guess it’s another side effect of the cancer, right? I tried to take a vacation from it, but it seems there’s no escaping it …

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This round has been better than expected, with some different down sides, as a result of the fall. The wonderful nurse who gave me my infusions this time suggested some tips for changing up my meds again to help better combat the nausea and it really helped – especially the first night. I also felt a bit better than last round yesterday, and even got to go up on our new shared apartment roof deck to watch the Boston fireworks – it was a perfect view, only slightly dampened (ha ha) by the brief downpour.

So the additional downside (besides the general annoyance of being injured) was that I had to go back to Dana-Farber (thank goodness it’s only a mile away now!) to get a shot that will boost my counts to help me fight infection more. You see, I had to go in Monday because the cuts on both my elbow and knee were showing signs of infection so I got put on an antibiotic then, and my oncologist wanted to help fight it with this booster. Only thing is, it will make my bones ache until tomorrow afternoon. Oh well. Better than an infection!

I know I say it a lot, but I really am just so thankful for my friends and family – I am so lucky! Nick, Mom, Mark, Tina, Tara and Vanessa joined for our chemo party, with Tara catering Tuesday and bringing by a few dinners on Wednesday – all delicious! And with them, I am starting to embrace bald – it’s not so bad. Certainly easier. And Nick says it show confidence – and I think he’s right. Thank you all – both who join in person, in spirit, who comment here, on facebook, email, pray, send good vibes – especially for keeping me laughing and smiling through it all! xoxoxo

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