5 years ago I was just days away from being released from City of Hope hospital!
By this time 5 years ago, I had survived high dose Melphalan chemo (which successfully killed the myeloma cells and almost me), celebrated the infusion of my stem cells (my life renewing "elixir"), and I was slowly recovering from the terrible awful infection complication "Staphylococcus aureus" , which invaded my system from my Hickman catheter- (ugh-you can Google that lovely infection!).
From the catheter implantation site, this yucky infection took over my body when the expected death defying neutropenic chemo crash happened. I was so sick and feverish, I barely recall the nurses and doctors rushing around scheduling and performing "emergency bedside surgery" to remove my infected Hickman catheter. But that happened in a blurry feverish fog, along with my chemo crash side effects. Eventually, the very slow build me back up recovery process finally kicked in!
Thankfully, a couple weeks later, things were beginning to improve. My new fragile (transplanted) immune system "engrafted" and was working hard to bring me back to life. At some point the hospital staff let me know I couldn't be released until I could "swallow" pills, eat/drink normally, etc, and I had to accept a Picc line to replace all the failing arm/hand IV's. The half dozen high dose antibiotic bags hanging from my large IV stand couldn't come home with me... so my ticket out of the hospital was accepting a (portable/implanted) Picc (infusion) line, so I could be cared for at home, and dosed/dispensed (at home) all these powerful antibiotics to send Staphylococcus aureus packing! I was so terrified to have another line implanted, that I resisted for a week. I was really scared I would develop another infection at the new insertion site. They sent in their expert staff to convince and reassure me- (a specialty team with high tech video equipment so I could watch the process). When they again underscored and emphasized it was my only "ticket out of the hospital" I accepted. And thank goodness I did, as I was running out of veins for IV's.
I was too sick to write much or take pictures back then, so I don't have a cool picture of my gross infection or IV stand with a half dozen bags of antibiotics, nutrition, hydration, etc. (I just had my little Razor phone back then), and I don't recall taking the millions of pictures back then, like we all do now with our "smart phones" lol). But here's 2 pictures of me once I was home:
Here I am with the amazing home IV infusion bottle.
I had a visiting nurse come and assist
with my Picc line, antibiotic infusions, blood tests, etc.
Check out my Aug 2010 posts for my thoughts back then :)
with my Picc line, antibiotic infusions, blood tests, etc.
Check out my Aug 2010 posts for my thoughts back then :)
Here's my STERILE Picc lines.
I emphasize sterile, as I was a little too over confident with my Hickman,
thinking me, I wouldn't ever get an infection... HA!
thinking me, I wouldn't ever get an infection... HA!
Notice my very thinning hair.
But still amazing I had hair during my transplant
and for another month, until I realized it was time to buzz!
But still amazing I had hair during my transplant
and for another month, until I realized it was time to buzz!
I was a changed person at that time, but trying to battle back to me... My SCT complications ordeal was quite the reality check for me, as I truly believed I'd never get out of the hospital...
Well that was life then, July 2010... and here's my July 2015 update:
My Neupogen shots a few weeks ago sure did successfully prop me up, well at least for a few days (good experiment!). My WBCs increased, and for a few days my side effects lessened. I've learned, and my Drs agree, that my GI side effects are definitely correlated with my low super challenged immune system. Simply put, when my WBCs, etc are low, and my Whites in the lower 2's, with ANC near 1.0 (bordering on Neutropenic), I'm a volcanic GI mess. Yes, Imodium etc is my best friend, but sometimes "a body's just got to do what a body's got to do"... and here's a few stories about that:
Life must go on, right?! My situation ain't gonna change, and myeloma will always be a part of my life. For real- this is my life from now on, forever. So after my awful feelings from my steroid crash days subside, and my body can't possibly poop any more (since I'm not putting much in on those days), and the achy, punched in the stomach feelings subside, along with the on-edge I'll punch YOU too feelings ;) and the horrible fatigue, dizzy, crawly skin feelings subside, and I begin to feel somewhat better... I then let myself think about life outside my bathroom.
This week was a busy one with a beloved family member's passing and memorial service for him, a few days scheduled in my office to see students, my oncology status appointment, a wedding and a wedding shower. I was on my Revlimid one week break, so I tried to do all of these events, and I tried to eat whatever appealed to me, whenever it appealed to me. Well, that didn't go so well LOL, but you know what, I'm getting so I don't care about the repercussions, I'm just going for it when I feel ok (and see what happens!) HA! But try as I do to be "normal" and eat normal, o boy, do I get ambushed and ambushed BAD, even with "pre-gaming" with "shots" of Imodium. Truly this IS that fine line between HUMOR and TRAGEDY!!!!
So we went to my beloved Uncle's service and then to his house afterwards with our extended family. Lovely people, lovely memories, reminiscing about his life and how he deeply touched all of us. So wonderful to see everyone together from across the country! It was a positive uplifting event, as he was almost 91, had lived a full life and was "ready" to be with his beloved wife, who had passed several years ago. As always, I never eat before I leave the house for events. I have learned NOT to eat at events if they are NOT a quick driving distance to my home.. because when the angry volcano erupts, it really erupts! Imodium only works for so long, and like I've said, the body eventually's gotta do what the body must do... hello ridiculous Chew and Poo lifestyle forever. And as I have posted before (sorry- not sorry :), my unlucky poo adventures continue on, and this event was NO different.
Wonderful deli food had been ordered, and I kept having to explain to everyone why I wasn't eating (myeloma is such an "invisible" cancer). It was an opulent display of delectable foods that I hadn't indulged in in a very looooong time. So guess what I finally did? Ffff it I thought, I'm just going to eat, and hope my pal Imodium "backs me up" ... haaa that pun just happened! So I ate. And we stayed and chatted. And I watched the clock knowing I'm sometimes safe for an hour or so. I also was very aware of the fact that we were about 40+ minutes from home.. but I thought I'd be fine, (always the eternal optimist), thinking I'm nearing the end of my chemo break, and surely Revlimid would be somewhat out of my system, and I could chance it. HA! I pushed my luck and stayed too long...
Yummy!
Yumm
Yummm!!
Yep, I stayed too long and pushed my unlucky luck too far! Soon after we got on the freeway, I felt THOSE all too familiar GI signs. Uuuuggghhh!! I'm doomed! I blew it this time! Petal to the metal as I'm (safely flying) home on the freeway between 70-80 MPH. I'm realizing my GI situation is a looming disaster and I'm really getting desperate. Jim asked me if I'd like to stop at a restaurant to use a bathroom, and I barely breathed my reply of "NO, not possible"... " I won't even make it into the bathroom"... and just as I uttered this, WE CAME TO A FREEWAY DETOUR THAT WOULD TAKE US IN THE ABSOLUTE OPPOSITE DIRECTION OF OUR HOUSE! Seriously, I'm just "dying" at this point. I can hardly breathe, and I'm just thinking I am going to have a MAJOR GI disaster in the car. Note the "humor" and "tragedy" here!
This opposite direction detour abruptly leads us into several 5+ car pile ups, where stupid tailgaters had hit each other, and it's cars literally scattered and shattered all over! The freeway lanes we're in, are blocked and totally backed up! ... OMG, I'm just "dying". The volcano is very very angry at this point... I'm thinking how absolutley ridiculous my situation is and I'm never ever eating out ever again! Why meeeeee!!! This seriously takes my breath away and gives me anxiety just retelling the story.
FINALLY THE TRAFFIC begins to clear and I'm able to get off the South direction freeway and head North again. All the while, I'm thinking about what box, bag or "container" might be in the car that I can use as an emergency porta-pottie if I have to... FML, this can't really be happening to me. I try to have just a few hours of normalcy, and boom... my compromised immune system awakens the evil GI volcano.
I'm RACING home, now closer to 75-80 consistently, and making Jim and Alissa VERY nervous... but I had to be the driver (the super-focus helped), or I would be truly doomed. I just kept focusing on each familiar offramp, anticipating each one bringing me closer to OUR offramp, deep breathing, and clenching "those" muscles"!!!
Finally, we're off the freeway, me racing (safely lol) to our house. I make it to our driveway.. .but I have to wait a second, clench those muscles, suppress that volcano for the dash to my beloved bathroom...
Yes I made it... not a second too soon. Truly I had a GI angel that night! wow! Never Ever will I Ever put myself in that circumstance Ever Again!
Here's a way too apropos picture of my beloved Uncle in his younger years. Can you even believe the irony of the picture my cousin posted:
Love you and miss you so much Uncle M
You were so kind, funny, caring, and so sharp witted.
Only one of you, and you are deeply treasured
and so very missed
and so very missed
And here we are 2009, just days before my 12.30.09
myeloma diagnosis
Here we go again. The news wasn't good. My myeloma numbers are up, my immune system is down. Which makes total sense. Which means the correlation between my compromised immune system and my volcanic, Chew and Poo GI, is a fact.
WBC's = 2.4 (low= why I feel yucky, fatigued, volcanic GI) 4 - 11 = normal range
M-Protein = 1.26 (up = bad) normal/remission = Zero
IgA= 1620 = (up = bad) 70 - 400 = normal range
ANC = 1.4 (low = bad) normal range= 1.8 - 7.7
And so, myeloma marches forward and I battle with focus on "quality" of life vs quantity. YES we talked about adding Velcade and/or other meds. NO I'm not brave yet to change/add new chemos. I fear worse/different, new unpredictable side effects. Yes my current side effects are awful, yucky and challenging. But they're fairly predictable and fairly manageable (lol, if I eat at home, I know to stay at home, or if I eat out local, I better never hit any traffic or accidents ever again!)
So I was a bit pissed off with this newsy reality check of my circumstances. By the time Jim and I left my appointment I was finally hungry again, so I said heck, F it, LET'S go EAT and pretend we're on a fun trip! It's a weird thing. I don't get excruciating cramps beforehand. And I can be volcanic and hungry at the same time. It just hits me FAST and I just I HAVE TO GO right then! So taking NO chances, I again pre-gamed with Imodium, and off we went to Islands restaurant close to home!
You know which one is mine :)
You know which one is mine :)
But do you think I ate it all??
And where do you think I wound up afterwards,
a few hours later? Yep! I sure did :(
But it sure was yummy at the time,
and I made it home just in time with NO problem!
So that brings me to today- I attended a BEAUTIFUL wedding this evening. And I "pre-gamed" with Dex steroids. I wasn't sure after all my crazy GI emergencies this week that I would be ok there, so yes, I didn't eat all day, but brought soda crackers with me to the wedding. And yes, it was miles from my house, about a 20-30 min drive, assuming NO traffic or accidents LOL. So you know what I did... I didn't eat at first. I chatted it up with everyone at our table, watching them eat delicious food. Then I got pissed off again about my limitations. Thrilled I was able to attend for sure, thank you very much Dexamethasone steroids that allowed me to go and feel propped up... and are continuing to keep me up to 3:00am right now writing this much too long, much too detailed blog. So I decided to chance it tonight, and I ATE! Delicately though, just dry salad, no oils, mild mashed potatoes, and wonderful breads to Cork Me Up! So far so good, thank you very much steroids which I will take the 2nd half tomorrow, to attend my daughter's childhood friend's wedding shower. I FEAR THIS TIME TOMORROW, and into Monday and Tuesday as it's CRASH time... o well... go to Hell-o myeloma... I WANT TO LIVE LIFE AND PRETEND TO BE NORMAL! If just for a little bit.
Truly a magnificent facility,
beautiful bride and groom,
wonderful friends and neighbors.
So glad I went pretending to be normal,
even if just for a few hours!
even if just for a few hours!
The trees were stunning with the evening setting sun piercing through-
I felt so alive, peaceful and invigorated, lucky to be alive,
lucky to attend this beautiful event full of love and friendship
5 years ago today, I was still hospitalized
5 years ago today, I was still in a very small room, fighting for my life
5 years ago today, I couldn't breathe fresh air, or be surrounded in nature's beauty
5 years ago today, I couldn't even attempt to eat what I ate this month, even tho it "backfired"!
5 years ago today, I was surviving my high dose chemo and stem cell transplant
5 years ago today, I was a very different girl then today
5 years ago today, I was beaten up, but hopeful
Today, I am even more beaten up, and less hopeful
Today, tho, I was outside, among wonderful friends, breathing nature's fresh air, celebrating LIFE!
Next month I will tell you about a possible
bucket list plan my oncologist and I discussed,
so maybe, one day, I can do this...
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
