Take It Back... Or Else

WARNING: THIS POST IS NOT LIKE THE USUAL, FUNNY, WITTY BLOG POSTS THAT I HAVE PREVIOUSLY POSTED.  I'M A LITTLE ANGRY, NOT AT CANCER, BUT AT THE SERIOUS AMOUNTS OF INSENSITIVITY THAT WERE EXPRESSED TO ME THE OTHER DAY, AND I HAVE TO VENT, BECAUSE THE DOCTORS SAY THAT I SHOULD AVOID STRESS AND THAT I SHOULD'T  HOLD THINGS IN, BECAUSE IT ISN'T GOOD FOR ME...  I HAVE COOLED DOWN FOR A FEW DAYS.... HOWEVER, I AM STILL A TAD MAD.

Maybe I'm being too sensitive, but I don't think I am.  Granted, I will admit that I am probably a tad more sensitive than what I was pre-cancer.  I am also probably a hormonal mess (thank you cancer drugs) however, I think it is very insensitive to be critical of the way that other people deal with challenging situations.

In case you've missed any of the saga that has been my life for the last 10 months let me sum it up for you:  I went for what I thought was going to a completely unnecessary mammogram a year ago December 16.  It turned into something completely different.  I was informed by a pimply faced, Doogie Houser type that I definitely had cancer before I could even plant my body in a chair.  All of this was followed by blood work, multiple biopsies, an MRI (that I was sure I wasn't going to live through), another biopsy (that I almost didn't live through), a Pet Scan, Chest x-rays, an echo cardiogram, surgery to install a port... and all of this was before chemo even started.  I had 6 rounds of chemo and spent the next 4 months of my life feeling like I had the flu, A REALLY HORRIFIC FLU.  I lost my hair, my mind, 2 toe nails, and nearly lost 10 fingernails.  My bones hurt so bad that I feared that by the time chemo was over that they would have completely disintegrated.  My hands and feet were swollen and the feeling in them was starting to disappear.  On top of all of this, I couldn't sleep, and food that was good for me tasted like crap.

Just when I was starting to feel like a normal human being again for the 1st time in almost 6 months, it was time for surgery.... Here we go again, right?  We all remember how much fun I had with that.  Can I tell you that I haven't had a decent nights sleep since all of this started (in December of last year, mind you).  Then came the fills and the fun... elephants on your chest, oh yes please!  The elephants had just started to go away when radiation started.  (I'm starting to see a pattern here.  Every time I start to feel normal, the torture starts all over again.)    Almost 6 weeks later, the elephants are back along with sharp, pulling sensations that scream across my chest at least a hundred times a day.  And I know I haven't mentioned it, but I'm so tired!  I am pretty sure that I could sleep for 3 or 4 days without ever waking up.  (I was driving home from somewhere today at noon, and almost fell asleep at a red light- I never know when it's going to hit,!  Not good.)

I've handled all of this pretty well, or at least I think I have, that's what they tell me anyway!  I stared death in the face, yes, I could have died.  I didn't.... and I'm not going to, well at least not any time in the near future.  I've managed to face chemo, surgery, and radiation  with a smile on my face, and a sense of humor that has kept all of my service providers, my family, and my friends entertained for the last 10 months.  I've stayed positive (even though at times it was challenging as hell), and believe me, looked forward to the day when all of this cancer business was over.  I have longed for my "normal" life for the last 10 months, and have done everything "normal" that I have physically been able to do.  The laundry has always been done, the house has always been cleaned, there has always been food in the refrigerator, and I have continued to do all of the purchasing, logistics, payroll and taxes for the business (which I can assure you was not without it's challenges)!

So, when someone tells me 3 days ago that it's time to move on, not "dwell" on it, that everything is back to normal, just because the cancer is gone, I wanted to jump on an airplane and personally choke that "someone".   (Can you seriously be that insensitive?)  Oh, but wait, I can't because I still have radiation, physical therapy, and Herceptin infusions to go to, and I probably won't make it through airport security because I have magnets in my chest.... and I have not yet been cleared to fly, yeah, there's that.  I am so glad that everything is back to normal.

OH
MY
GOSH!

I wish it were that simple.  In a lot of ways, I wish that everything could return to normal, I would probably kill for most everything to be just the way that it was on this day a year ago. Believe me, I never would have chosen this for myself had I been given a choice.  I had hair on my head, I didn't have raging headaches 24/7, and my whole chest didn't scream every time I moved.  I could sleep without waking up every 30 minutes to try to get comfortable. I could go out in the sun without feeling like I was going to pass out. I had toenails.  And most importantly, I wasn't constantly exhausted, out of breath, and trying to figure out what the heck I was doing; I could start a sentence and finish it.  I could snuggle up next to my husband, or my dogs without being in serious amounts of pain. I didn't have to consult with a physician to get approval before jumping on a plane. So while all of that sounds wonderful, instead I will be be finishing radiation, going for yet another PET scan, going back to see the plastic surgeon, finishing physical therapy, having another echo cardiogram, seeing the oncologist, and having another Herceptin infusion.  Just for the record, it's not really what I "want" to be doing, but I don't really have much of a choice.  So, if by finishing out the recommended, and prescribed course of treatment, I am "DWELLING" on cancer, so be it.

 I have accepted that my life will never be like it was before cancer, (and I've grown enough spiritually to accept that), cancer will always be a part of me, of who I am.  I will always have to return to oncologists offices, I will always be getting blood work done, and having pet scans.  While I can't wave a magic wand and make everything "normal" again, I am taking the necessary steps to move towards a "new normal" at the earliest possible moment.

Oh, and one more thing.  Believe me when I say, there is nothing "FREE" about my boob job.  Trust me.

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!