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Archive for the ‘lymphedema’ Category

Just Call Me Pincushion

Posted in Cancer, chemotherapy, family, lymphedema, Uncategorized, tagged , , , , , , , , , , on October 16, 2012| Leave a Comment »

Today we set the record for the number of times it took to find a vein in my left arm to work: four. And that was four times of repeatedly trying and routing around in each of the locations. Not fun. The photo above shows the vein locator that was finally broken out, but didn’t end up being a ton of help, as the good vein that was found was below one that was already tried, so couldn’t be used. Ultimately what was decided, as this has become a growing problem, is that next week I will have a port put in that will be used for the five remaining infusions. The procedure to insert it under my skin will take place just before chemo so it will just make for a longer day. While it also has its pros and cons, at least we won’t have to go through the time and pain of searching for a vein to work any more – it’s just too bad that we didn’t do it in the beginning. But hindsight is always 50/50, right? (So if you’re just starting out and know, as I did, that your veins aren’t great, ask about a port!)

Overall, once we got the IV in, all was pretty good. I was able to dial back the steroids another dose, although that made the Benadryl hit me more so I dozed off a few times while talking to mom and Tina. As usual, they just laughed at me – most lovingly, of course!

Before the infusion, I had a great consultation with my oncologist. My blood work was all good, although it was interesting that there was a small blip in my liver that must’ve been the one time I took ibuprofen this week. I will continue to try to stay away from it… She answered all my questions about the increasing side effects I’m encountering and it was very reassuring. I can do this – only five more to go!!!

Because of my upcoming trip (check out my next entry for the exciting news), I was given a prescription for a compression sleeve. I visited the Friends Place boutique at Dana-Farber where Rosemary not only fitted me for the sleeve so that I can fly (helps prevent lymphedema), but also for a compression glove and found me a bra that instantly helped with some of the pains I’ve been having lately. Everyone there is so nice and helpful, I highly recommend it for everything from cancer-related gifts, jewelry and such, to the basics live compression items, wig fittings and other specialty services and products.

Then it was home to nap, and so far so good, since. I am glad to be counting down and to be done being a pincushion!

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48 hours: the move, the fall, a break and the shave

Posted in Alone, Boston, Cancer, chemotherapy, Decisions, family, hair, Home, lymphedema, recovery, Road trip, work, tagged , , , , , , , , , , , , , , on June 30, 2012| 6 Comments »

Where to start… (I can hear Julie Andrews singing in my head: “Let’s start at the very beginning… a very good place to start…”)

The Move

At about this time Thursday night, I was beginning to panic a bit. Mom and I were down to our last couple of boxes and we still had practically the entire kitchen (small as it was, there were plenty of things stored in those tall cabinets!) and my very crowded room. Luckily, Mike showed up with more boxes (my hero!) and we were able to continue our packing frenzy. We finally – after two late night strolls to the package store to procure even more boxes and one to CVS for more packing tape – called it a wrap around 2:30 a.m. Then it was up at 6:30 to finish and get the move done.

I’ll skip all the details and just say that while it took double the amount of time (and hence cost) than estimated for my size place, since I had so much STUFF jammed in there, the movers were great, and we had everything we owned in our new Brookline home by 2 p.m. Nick and I could never have done it without Mom! (Need moving help? We’ll rent her out! 😉 )

The list of things Nick and I want for the new apartment keeps growing – and truly morphed once we had all of our belongings here and saw there’s even more space than we thought. Bistro table and chairs for the patio, coffee table, maybe a new dining table and chairs, possibly a desk for me, a set of wine glasses since mine have almost all broken, new dishes that aren’t chipped … There’s no rush for most, but what I did feel the need to immediately purchase was a fourth bookcase to match the other three I got at Ikea in London. I didn’t want to unpack all my books until I had the shelves in order. So I texted Tina and she agreed to meet me at Ikea.

The Fall

On the way, I made a pit stop at The Christmas Tree Shop to check out their patio sets real quick. FYI, their patio furniture is all connected by little cords on the ground. While walking between, one of the cords caught on my flip flop and – in what felt like slow motion, I went flying through the air, landed on my (you guessed it) right arm, and slid across the sidewalk until coming to a stop by the curb. I just lay there in shock, trying to figure out where the pain was, if I could move and cursing myself for not landing on my left side. I was the only one out there, but a man and his wife were by the door, a few feet away, whispering to each other and watching me to see if I got up. I smiled at them, and pulled myself over to sit on the curb and collect myself.

When I realized how much I was bleeding (palm, elbow and knee), I hobbled inside to the Customer Service desk and they brought out an ancient first aid kit (luckily I had alcohol wipes in my purse since they didn’t have any) and the manager. He took an account of what happened and all my info while I bandaged myself up. And then off he went to have them fix the patio sets to try to prevent it from happening again.

I felt like a pathetic mess. This is not me! What did I do wrong that all these bad things keep happening?! I don’t want to whine, but really???? Tara came up with a theory: June 30 is the last day of it all. It’s the end of the first half of the year. The first half may have sucked, but the second half will be all about recovery. Healing and good things for a change. And while chemo is not fun, it is part of the process and will lead to health. Ok, I’ll buy it. I’m ready for July 1 and all the good stuff!

In slightly better spirits due to only one more not-so-great day if Tara is correct, I got myself over to Ikea and met Tina, who, like any good mother, offered to kiss my boo boos if it would help, then to push me in the carriage when I was having trouble walking and, finally, a piggy back ride toward the end of the long store. I appreciated all of the offers, but declined. The pain worsened as the night went on, and it hurt to straighten and bend it. So, after a brief panic over if this would be the beginning of lymphedema and better safe than sorry, Nick and Tina convinced me to go to the ER. Yet another hospital adventure!

Over the several hours, first in the waiting room and then in our own curtain room, Tina and I amused ourselves people watching and eavesdropping. It was –  to quote one of the EMS guys – a busy trauma night for Boston. We also kept each other laughing and mused over the fact that every time we’re in the hospital together we end up in fits of giggles, which you never hear coming from behind any other curtains. They probably think we’re crazy. We are, but that’s ok.

By 2:30 a.m. we had the answer: radial head fracture – crack in my elbow. I got a sling, pain instructions and orders to make a date with an orthapedic doctor. How many doctors does one girl need?!?!

A Break

While waking up this morning was not fun – neither the hour nor finding out my hair was starting to come out in chunks – it was for a good reason: Vanessa brought our visiting friend Trish over. Trish used to work with us at National Grid, and the three of us were Charlie’s Angels. It was so nice just to walk and talk and eat and laugh and catch-up. As with all good friends, it was like no time had passed at all, although the last time I saw Trish was at the end of the road trip, when our visit was cut short because I found out my grandmother had passed away and I needed to get home. There is never enough time, and the morning flew by too quickly. Hopefully Charlie’s Angels will reunite again in the not too distant future – we need Nick to win the lottery so we can start our non-profit PR business that he said he’ll finance!

The Shave

Once Trish and Vanessa left, I took a quick nap and then awoke to realize I could put it off no longer: there was practically more hair on my clothes and bed than on my head. Time for it all to go. I walked down the street to Alton Barbers, giving myself a pep talk along the way. While I felt I had to do it alone, I had all of my friends’ and family’s comments running through my head: bald is beautiful, it’s cool for summer, it will grow back, you’re still a princess, hair is just a pain in the butt, you are beautiful, you have great eyes and an infectious smile, G.I. Amy, big sombreros, be bold, you won’t have to shave my legs… see, I do listen, despite what some people think! 😉

Alton’s was empty when I walked in, except for the woman behind the counter. When she asked if she could help me, I just said, “I need to cut it all off.” She asked if I meant a crew cut or shaved and I said shaved. Her eyes widened, she asked if I was sure and I told her yes, because it would all be gone in a matter of days anyway. She half smiled, nodded in understanding and yelled “Mike!!!!”

Mike appeared from the back, showed me to a chair and the nice woman explained for me. He motioned toward a chair, and I sat while he prepped. My one request: “Can I please not face the mirror?” And he quickly swiveled me around. No one spoke the entire time. And then, after he used the blow dryer to blow away all the stray hairs, I broke the silence by smiling and saying “I didn’t think that hair cut was going to end with a blow dry!” They both laughed and then started gushing about how I have a perfect head and how women’s heads are so much smaller than men’s, how cool it will be for summer and how great I look. I turned toward the mirror and laughed at my bald reflection – so strange!!! I put on my pink Dana-Farber Red Sox hat (they gave me a new one when I was there Thursday morning since the other was stolen), and walked back to my new home.

I am ok. I am better than I thought I would be. I know I’m probably going to panic when I need to get ready to go out to a nice dinner, when I go to work Monday, possibly later tonight and probably a million other times, but for right now, I am ok. And I know I will be. After all, you all keep telling me I’m strong and beautiful, so I must be. Thank you… And Tara, I hope your Second half of the year theory proves to be true!

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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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