A little over a week ago, I had this strange pain in the middle finger on my right hand. It felt bruised, hurt to bend, and the top of my right hand also felt bruised. It seemed as though I'd jammed my middle finger somehow (being naturally clumsy, that would normally be entirely possible, but since I bruise so easily, if that would have been the cause, my whole hand would have been purple, so I was pretty sure that wasn't what caused it). I wondered for several days if I should "do" something about it (as that pesky "L" word is always at the back of my mind, given that I had 12 lymph nodes removed), and I googled to see if "lymphedema in middle finger" was a thing, but I couldn't find anything that made me think that's what it was. So I chalked it up to being paranoid/borderline hypochondriac and ignored it.
Monday night my finger swelled up so much that I couldn't see the creases in my knuckle. I couldn't bend it. I couldn't put the fingers on my hand together. And of course it was a holiday evening and I didn't think it was worth a trip to the ER. But I looked up "exercises for swollen finger" and did some fist clenching and slept (fitfully) with my hand above my heart until I could call the nurse navigator in the morning.
Skipping ahead, I got in to see the OT, Audrey, this morning. It IS lymphedema. It's Stage 1, which is reversible. In addition, my old friend Cording has returned, and there is a lot of scar tissue and lymph blockage post-surgically. Audrey told me how happy she was that I came in when I did, and that we will work with exercises, lymphatic drainage/massage, and I now get to wear a lovely compression glove and sleeve.
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| This is the temporary sleeve--I'll get measured for a custom made one sometime next week |
THIS TOTALLY SUCKS AND CANCER HAS TAKEN OVER EVERY PART OF MY LIFE FROM USING VACATION TIME FOR DOCTOR APPOINTMENTS TO NEEDING TO WEAR A DENTAL APPLIANCE FROM THE SURGICAL INTUBATION TO NEEDING TO BRING A CHANGE OF CLOTHING PLACES BECAUSE THE "HOT FLASHES" LEAVE ME DRIPPING AND WHEN I'M FINALLY CLEARED TO RUN AGAIN, THE PAIN FROM THE AROMATASE INHIBITOR MAKES ME WADDLE IN PAIN AFTERWARDS.
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OK, I'm better. I am very fortunate that I know these^ things. I know to trust myself when something doesn't feel right. I have good medical insurance and a wonderful team who will check things out and will be honest with me. I *did* seek out help at Stage 1 (reversible) lymphedema, and I can do something about it. I have a wonderfully understanding, flexible job and am surrounded by so much support from family and friends that I wish I could share it with those who don't have the support. Also, I can ride a bike again--for real. The new, permanent breast implants do not rub on my arms and make them go numb. Is it okay, though, if, despite these things, I still hate my new "normal"?
You are brave. And articulate. And a good patient self-advocate. Thanks for letting us share this journey with you for in that perhaps you gain a bit of energy and support from the stardust that is in all of us courtesy of the universe.
ReplyDeleteWell, that totally sux. You're rockin' that arm thing too. How fun is that and hot flashes too? You are NOT as whiny as I would be. You are strong and loving to share this wild toads ride you're on.
ReplyDeleteOh Lori :( it is totally understandable to hate your new normal - somewhere down the line though you have to learn not to-or all you have is hate. Although, my situation is nothing like yours, I too have a new Normal that is TOTALLY not my old normal - and I HATE the new normal - and some days I really am depressed about it and have a pity party for myself - and other days I just try to find ways to make my new normal more like ME - but it is so so hard - and in your case IMPOSSIBLE not to think worst case scenario for every ache and pain - somehow you just have to do it - know that even worst case scenario is out of your control - and most likely will NEVER even come - so take care of yourself, listen to your body - LOVE every second of your kids and your husband and be so thankful that you have them - and every now and then - remember that it IS normal to have times where you hate and are mad and whine and have a pity party - but just try to make the good times outweigh those periods - SO much easier said then done - BELIEVE me I know. Xoxoxoxoxo thank you for sharing with us !!!!
ReplyDeleteDear Sharon--I think of you so often when I hit rough spots. The (relatively few) times I'm in awful pain, I think of you and am again amazed at your strength.
DeleteAnd yes--my husband and kids--that's why I feel this "warning" was a true gift. Many people don't get a reminder of their mortality and a time to enjoy.
It's absolutely OK, Lori. Whine away, and don't ever feel you need to apologize for it. It isn't fair. It sucks. With the current heat and humidity, it sounds awful to be stuffed like a sausage. Sending you lots of love and hugs, and cooling, non-swelling vibes.
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