Ok Body, You can Stop it Now! And a Funny Story

10.15.15
Hello October

Seems like everyone around me is traveling, having fun, playing, being spontaneous, enjoying life, enjoying places, enjoying careers, enjoying goals, helping others make the most of their lives, enjoying nature’s changing of the season’s stunning Fall colors, traveling to exotic places, traveling, traveling, traveling. Enjoying life. Traveling. Enjoying the “fruits of their labor”. Working and doing. Traveling. Going. Doing. Accomplishing. Young, Middle, Old… living life, doing life deeply. Traveling. Traveling. Traveling. Doing. Doing. Doing. What the heck happened to me? I'm too "young", too "unfinished" to be so "handicapped" by incurable cancer. Me- I’m a prisoner of my GI system and my totally DYSFUNCTIONAL immune system.
My life's options, my freedom to really be me, ended over 6 years ago. Please don’t tell me there’s a got to be a way for me to be “normal” again, or "get back" to living my life as I knew it, or travel. Even living on Imodium or Lomotil all the time, wearing a mask in public, etc, is just a small issue of this complex diagnosis. More or less meds, won't fix or alleviate myeloma and it's side effects. Please don’t tell me to be brave and change from Revlimid to a different chemo regimen to pummel myeloma harder. It’s really scary to anticipate new, unknown chemo side effects that could be worse, with multiple additional side effects. At least my current physiological challenges are known, albeit unpredictable. It's a combination of medical science and medical magic determining which drugs to use to kill off myeloma, while not knowing which creates which side effects, how it will affect me treatment-wise, combined with how steroids affect me and myeloma, and how they all interact with each other to kill the cancer cells.
Sorry to rant, it's all so complicated and I JUST WANT TO FEEL GOOD!

So I participate in a few things when chemo fatigue hasn’t completely crippled me. I starve myself prior to events, just so I can “safely” leave the house. Crazy! And then I “pre-game” with Imodium for “insurance”. I try to go into my office when I think it's "safe" and I have a fraction of energy, as that gives me a sense of normalcy and my old self. I try to still have a social life, when I have a fraction of energy. I'm trying to act NORMAL, knowing I AM NOT NORMAL ANYMORE. My body and it’s reactions to things is so unpredictable, and no matter how hard I try, pretend or "force" situations on myself, I'm not normal or healthy. People don’t understand this when they see me, because I look semi-normal, and I make an effort to still be the effervescent Julie everyone knew/knows. 

And so.............. I thought I’d be “safe” this past Tuesday night and go out on a mom/daughter date with another mom and daughter. We picked Olive Garden. I decided on benign soup and salad for my dinner. Nothing spicy, nothing greasy, nothing dramatic. We ate, laughed, talked, reminisced and I thought I would be fine. As usual, I didn’t eat before we went… well except for an Ensure mid-morning with my Acyclovir and a few vitamins (B-12, D-3). So I thought I’d be ok. And I really felt kind of ok throughout the day, and during our meal. But honestly, I always mentally clock watch, knowing I’m on borrowed GI time. But I really thought I’d be ok this time. I noted the location of the restaurant bathroom, just in case lol. But I really thought I’d be ok this time.

So we lingered and chatted. I thought I’d be ok. I think I was gone about 2 hours. Whoohoo, big deal, right. I really thought I’d be ok. AND THEN IT HAPPENED. So incredibly SUDDENLY IT HAPPENED. My daughter and I were walking out to our car… and suddenly, I felt the telltale GI rumble. IT SERIOUSLY COMES ON THAT FAST. NO WARNING. NO DISCOMFORT, THEN BOOM! I can’t believe it. What the heck body! Too late to get back to the restaurant bathroom, and I knew at this point, home is where I needed to be, now! Seriously, I’m not going to make it… The closer we get to home, the more DESPERATE I become.

Drive!… Get there!…Drive!... Get home FAST! I warn Alissa I’m pulling into the driveway, not fully parking, and everyone get out of my way…  and hopefully I’ll make it. I seriously cannot believe this is happening to me AGAIN. It comes on that SUDDENLY. There’s NO warning. My GI is NOT “normal” like yours. The volcanic eruption just suddenly happens, and I have no choice… I’m always so shocked. I can’t believe I can go from ok, pretend-normal, to absolutely desperate, I am NOT going to make it to my bathroom status. I barely did, seriously barely, without a second to spare. And there I stayed for a long time. Over and over again, and again and again and again and again until I think I finally fell into bed around 1:00 am. Really body, it’s truly so unbelievable… I’m traumatized each time. In stunned disbelief that this is really my life.

I’m so tired of myeloma, so tired of the cancer life, so tired of thinking about it, so tired of dealing with it, so tired of me and soooooooooooooooooooooo tired of all my side effects. Bet you’re so tired of my same theme, same stupid GI stories, same rants about my volcanic GI experiences.   
So from now on, I’ll feature some funny stories (non GI related!) each time I post, especially since it’s coming to that time of year, where I reminisce about my Fall 2009 diagnosis. How about that!

So back in Spring 2010, during the middle of my initial treatments, when I was so clueless about what it really meant to have cancer, be a cancer patient and undergo cancer treatments, I had a crazy experience while at work seeing students as usual. I really was so naïve. What the heck was I thinking!? I should have taken a medical leave and really focused on my health (and still guilty, as I'm still trying to work). But no, I continued on “business as usual”, no matter how awful or crazy I felt, I just kept trying to be normal. Still do. Stupid. It was, (is), just such an out of body experience for me… or better stated…  DENIAL!

So I’m in my office seeing a student when I feel a really strange swelling feeling in my neck. But of course, I keep on counseling, focusing on my student, pretending to myself I’m ok. But I’m really not ok. But always thinking, whatever it is, it will subside and disappear. I’m not used to being a sickie and not feeling ok, so I just keep on going. But I have this funny puffy feeling in my neck, in that area between your neck and your collar bone. I feel a bit light headed too. But I just keep on counseling. But this feeling of swelling intensifies, until I feel like I have a bubble or sponge ball bulging in that area, doubling my neck! I reach up there and sure enough, I’ve got this huge puffy poofy pillow like swelling there, and it’s warm and swollen. I say to my student, “sorry to ask you this, but does my neck look strange to you? Do you see anything weird there”, as I point to that area. She says, “OMG Julie, you have a huge lump there! Your neck is really swollen there. It looks really strange, do you want me to go get someone?” “Well actually”, I replied, “I do feel a bit light headed and woozy, but are you sure you don’t want to finish our appointment?” Seriously, how dumb am I, or how much in cancer denial am I ?! 

So I have my student go out to the front office and tell someone there, who also went to get my daughter (who just happened to work in the next office over). Several people arrived in my office to assess the alien thing bulging out from my neck/collarbone area. ”Are you crazy Julie?!, get the *bleep* out of here and get to ER!” they all yelled at me. “Seriously, is it really that bad”, I laughed back. By this time Alissa had called Jim and he raced over to the college to get me to ER. Shheeesh, calm down everyone. I’ll be fine I’m thinking. I’m such an anti-dramatist and under-reactor. But everyone talked sense into me, and we called my Oncologist, who immediately recommended I start taking Benadryl and get to ER or Urgent Care.  

By the time I arrived at the hospital, this THING was pretty big, and quite puffy and quite annoying. No one could figure out what it was, and decided it was some sort of internal “hematoma”. Secretly I began to worry it would puff up so much it would strangle me! They recommended Benadryl, ice packs and see my Oncologist if it didn’t subside. Everyone was freaking out about it, and I was thinking it was like a ginormous alien blood sucking tick taking up residency inside my neck! Ever see a tick so puffed up it looks like it would pop? Well make that visual about 3x2, and that's what my right side neck looked like!

Sorry, couldn't resist :)

By that time in all my treatments, my whole body felt so alien to me, and so many weird things happened to me daily, and I was so out of control of my body, I figured "It" would just deflate or suffocate me ;) Slowly though, overnight and into the next few days the swelling went down and eventually subsided. No one was ever able to fully identify what happened, but my Oncologist thought it was related to the high dose steroids I was on aggravating the site of a benign “neuroma” tumor I had removed in 1998. We still joke to this day about me being in my office, going on as usual with this alien amoeba blob taking over my body, and I’m just casual and “whatever” about it.

I used to whisper to myself: Cancer’s Not going to Change MY life! I’ll show you stupid cancer! Well, ha ha on me... cancer sure showed me, as here I am almost 6 years later, with cancer and chemo side effects still in charge…

So I came across this AMAZING video the other day, that completely summarizes what I would be doing with the 2nd half of my life after I retired from my extremely rewarding college career, if I didn’t have this stupid cancer that has taken over my life and so completely limited my activities and changed my goals forever.

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!