Sorry, Charlie- I Just Can't Accept That....


Call it women's intuition.

Call it a gut feeling.

Call it whatever you like, somehow I just knew that removing my axillary lymph nodes was going to be a problem.  As I sat in the office of a very pregnant radiation oncologist at the end of May discussing my concerns about radiation and lymphodema, and she assured me that there was no possible way that I could get lymphodema (because I am too thin, too young, too healthy, not diabetic, not a smoker, too active etc, etc, etc,) I had a gut feeling that she was wrong.  Somehow her instincts, or her gut feelings were a bit skewed by all of the hormones racing through her body.

As I raised concerns several times throughout the whole chemotherapy process about the horrible pain in my lymph nodes, I wondered if they weren't going to continue to be a problem.  But, I was told that pain in my lymph nodes during chemo was "normal".  I questioned the swelling throughout chemo in both my feet, my arms, and my hands.  It was all "normal".  Of course, there is no possible way that I could have had a lymphatic system in distress.... nope, not me.  It was not even up for discussion.

All along, I've had a gut feeling about my lymph nodes. (I really need to learn that my gut is pretty smart, and I should start listening to it on a regular basis, and sooner rather than later.).  I could even honestly admit that I have lost sleep over the swelling in my arms- it has concerned me for a very long time.  Maybe part of it is vanity, but more than that, I did not want to accept the limitations that were going to accompany lymphodema.  All along, my plan has been for a full recovery.  I knew that I was going to have to be extremely careful with my arms and hands.  No more manicures, no cuts, burns, stings, etc. to either one of my arms- any one of those things could cause an infection that would activate lymphodema in my arms.  But, there's even more than that with full blown lymphodema.  Being in the sun for long periods of time is completely out of the question, no hot tubs, no saunas, no jewelry on the affected side, no lifting anything over 15 pounds on the affected side.... and it goes on and on.  No, I was not prepared to deal with lingering problems like these.  These things do not fall under the category of "as good as new"....

Several weeks ago, I noticed that swelling in my left arm did not seem to be subsiding- despite the fact that I was doing the "Lymphodema prevention" exercises 3 or more times per day.   And this was at the 6 week mark from surgery.   My gut told me that there was a problem.  I immediately called the surgeons office and asked for a script to see a specialist.  It took me 3 weeks to get in to see a lymphodema therapist.  In the meantime, I've really been stressing about this.  And I'm probably over-reacting.  The swelling is not even that bad.  Unless you're really looking for it, you can't even tell that my arms are swollen.  But, I know it's there.  And this is not a condition that goes away, well not usually.... (I'm told that in very rare occasions, they have had women whose conditions disappeared several months after surgery, and after treatments have subsided.... so there is still hope!  And my radiation oncologist suspects that this is a combination of post-surgery swelling and swelling from the Herceptin treatments.)  There is also no known cure for this condition.

My therapist says my lymphatic system is definitely not functioning properly, but she is holding out hope, that with treatment, one or two of the little suckers left in my arm pit, will wake the heck up and start doing their jobs.  Yesterday was bad.  She did therapy on me and then proceeded to wrap my arm in 4 layers of stuff.  As I was making another appointment, trying not to look at my huge Michelan man arm, I noticed that my fingers were turning purple.  "MOVE EM!", she said.  I tried, I honestly did.  I wiggled em, and moved em like crazy, but it was getting worse, and the numbness was shooting the whole way up my arm.  So, as I was sitting in traffic, I was ripping off 4 layers of gauze.  I knew that wasn't going to last.

I'm sure it will come as no surprise that I have done a ton of research and reading on lymphodema.  I refuse to accept that this condition cannot be well managed, without huge changes in my every day routines.  (I just can't imagine never being able to soak in a hot tub again, I mean really?)  Actually, while I'm being truthful, I refuse to believe that this condition is really lymphodema and not just some post-surgical swelling with a little bit of a bad reaction to the Herceptin thrown in there just for good measure.  If it were truly lymphodema, the swelling would not subside with elevation... or so I am told.

So what are my options, and what can I do?  Well, if I had a horrible diet filled with tons of sugary and processed foods, I could eliminate those, but I already did that.  Supposedly berries (blueberries, raspberries, blackberries) are very good at stimulating the lymph system (so I've upped the intake of those), potassium is good- enter more bananas.  I have learned how to breath differently, I breath in through my nose while pushing my stomach out, and exhale while contracting my stomach muscles (that took a ton of practice!).... And supposedly one of the best forms of exercise for stimulating the lymphatic system- is jumping on a trampoline.  We did not have one of those.... but I found a very small one (46") that arrived this afternoon.  (I will be enlisting the help of 2 boxer dogs later this evening!)  Hopefully, I will be jumping in no time flat... I think I am gonna enjoy that.

This is what I am up against.  And I would be lying if I said that I am not frustrated with this situation.  I am more frustrated than anything that my physicians (3 of them) cannot seem to agree on what this is.  Are they just unwilling to admit that they were wrong?  Or do they just not know?  Maybe they're unwilling to admit that the Herceptin is so toxic that it's causing this horrible reaction?  I have no idea.  What I do know is that I am unwilling to accept that this is going to alter the way that I live my life.  I did not just go through hell to not be able to do any of the things that I like to do.  I'm just not okay with that... so If I have to jump for 45 minutes a day while sipping on blueberry-raspberry-blackberry-banana juice, breathing in through my nose and pushing out my stomach, and exhaling and sucking it in.... well then SO BE IT!



2 comments

  1. A friend has lymphodema ... over time (a few months) it subsided. Every now and then, it pops back up but mostly she lives her life as she used to - before the chemo and radiation and marrow transplant. She swims, enjoys her hot tub, eats pretty much what she wants and rarely exercises. I think this is all very individual so that's why I'm glad you are your own advocate in this whole thing. Push your docs and if they don't come up with answers, seek new docs. You are doing a super job of taking control of your life ... don't stop now!

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    1. Thank you so much for sharing that with me. Somehow it makes me feel so much better. I've yet to talk to any fellow breast cancer survivors with lymphodema- everyone just tells me that they've never had it! I fully intend to pursue this issue with everything I've got- and if the current team of docs can't get it right, I will find some who can!

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