(Updated!) Surprise, Surprise… Thank you Body for Sabotaging Me!

Hello 11.27.17
(and continued 11.30.17)

I Bit The Dust, and Got Really Sick…

A lot has happened since my 11.17.17 post. 
As I described previously, I had been battling a “head cold” since early November. It truly seemed like a head cold, as I had brief bouts of all the symptom types. Started with a minor headache, then minor sore throat, then a few sneezes and runny nose, then some coughing. I was proud, and bragging, that my body was able to fight off a “big one”!! ….

I continued with life on the days I felt ok, and I seriously did not push myself. I don’t do that. I read my body and symptoms, and don’t try to be a hero. I felt good, then lousy. Then good, then lousy…

November 19 brought the MMRF Marathon Walk.
I had started a team and lightly fundraised. As I always mention, I plan things, but never know if I will actually be able to participate in the events. But it seemed like all would be fine for this event, and I was set to go. However, I struggled with the idea that Check-In was 7:30am, the Program around 8:30am, and the Walk beginning at 9am. Early mornings are challenging for me now, as 1- I don’t sleep soundly or well, and especially anticipate having to get up early, therefore my sleep is even worse and less refreshing; 2- I never know how my “biology” will be, and worry that I won’t be able to leave the house on time, or if I do, might have “GI challenges” when I get to where I’m going, then that becomes an issue. My days before myeloma and chemo were “normal”, and mornings were a non issue as a “working mom”, doing everything that involved getting us to school and work by 8am!

But now, with the ravages of years of myeloma and chemo, my body does what my body wants to do to me, and I have little choice of what will happen “biologically”. Quality sleep is a big issue, and if you’ve followed my blog for a while, or know me personally, you know all about my crazy “lower GI challenges”, that really affect my life! So anyway, I managed to get going, and we got to the event with little problem. I felt tired of course, but nothing extreme. They had little lite breakfast snacks, which I didn’t indulge in, and envied all the “normal people” that can just eat, drink, and function.

We signed in, got our Tees, photos, chit chatted, listened to speakers, etc, then off to the races, as they say. I wasn’t planning to actually Walk the Walk, but my family and team were so surprised I wasn’t going with them, that I felt bad, and just went. It was a 5k, which I believe is about 3ish miles. I didn’t have difficulty, but I did wish a golf cart would have come along and offered me a ride back. But that’s ok, I did it, and again, wasn’t overly “walk related” tired. I’m always tired, so I didn’t feel anymore tired than “normal”.

Go Team Momma Viz! 
And off we went
And here we are at the completion. 
I do look pooped, by my slummpy posture
My super supportive gal pals, Janet and Laurie 
My ultra Marathoner Jesse, 
who’s completed hundreds of Marathons, 
many cancer fundraiser related

 Cuties Scott and Ashley

Cuties Kristin and Alissa
(I do look tired here…)

If you want to see all the public pictures of the event, click here, as there are over a thousand! 
Yes, I’m happy I did this, and very appreciative to all my Teammates and Donors that made this event such a success for our team. The remainder of the day was uneventful, and I tried to relax, eat early and get to bed early, as I had my 6 month check up appointment the next day, with my COH, SCT doctor. I had taken my labs several days before, and eagerly awaited hearing my myeloma stats. 
But the story will have to be continued, as today was a very complicated day, and I’ve run out of time and energy to continue this post… 
I promise though, I won’t leave you hanging too long… 

MM stats coming..
And the full illness, I really bit the dust and wound up really sick, with a super HIGH fever in ER-Urgent Care, story is coming!!! 

11.30.17 I’m Back! And here’s the rest of the crazy November story: 
So after the MMRF walk, I had my SCT Bi-yearly check up appointment. I was feeling ok, and didn’t have any suspicion a wild storm was brewing within me. All my check in stats, blood pressure, oxygen, temp, everything was normal. I mentioned I had been battling a lousy “headcold” since the beginning of November, and that I had the “routine” brief symptoms, but nothing dramatic. I mentioned the cough was there, but I didn’t have pain in my chest, no problem breathing, etc. My Dr listened to my chest, said he heard a little wheezing, but not congestion, etc. We chatted about my status and that my IgA was elevated again. I let him know, that due to infrequent “social events” I don’t always take the 20mg Dex every week, due to the several days of subsequent crash, and how that keeps me homebound, feeling yucky. We talked about Q of L, (meds vs life), and he really encouraged me to take it as regularly as possible, as my type of myeloma hates Dex. I promised I would, but here we go,… my Birthday was coming up, then Thanksgiving, then a few other events, hence my timing issues. See I love the “up” of Dex, but then have plan plan for a few days out of circulation, so I have to plan for the crash… Blah, Blah…

 I took the 20mg Dex today :))
 Not bad, right… IgG getting stronger on Darza, Pom, Dex
Still no M Protein showing!!
Not normal, but not bad! 
So Tuesday rolls around, and I feel ok, but I did feel a bit off. I chalked it up to all the things I had done all of November (while battling the headcold), and especially Sunday’s MMRF Walk. I went ahead and planned my Birthday for Wednesday, and Thanksgiving on Thursday, and another social event on Sunday. Sometime on Tuesday, I began to feel more off. I started feeling achy, blah, headachy. I tried to “will” it away. At this point it becomes a blurr, as to when the BIG FEVER actually hit. I think in the middle of the night, Tuesday in Wednesday. Yes, I developed a blazing FEVER on my Birthday. So symbolic, as I will never forget November 2009, when I turned 50, then a month later was diagnosed with Myeloma! 
I woke up, and just couldn’t believe how awful I felt. I knew what was happening… I was so sad, so devastated. I felt so betrayed by my body. I feel so betrayed all the time. But why, Body, why, on my Birthday, and Thanksgiving?? Why, I pined, moaned, lamented, almost cried… I just couldn’t believe my status… and it got worse, and worse, and worse each day. I let my family know all plans were off. I was so sad. They had to cancel my Bday dinner. Cancel Thanksgiving dinner, and eat by themselves. So sad. And I was so mad too. And I felt so physically awful. My body ached from the fever, and my body ached from coughing wrong, and pulling a muscles, pinching a nerve, or bruising a rid, I didn’t know. I didn’t want to eat or drink or do anything. But I pushed myself. I took children’s melt a way Tyelenol and Advil. I don’t think it made much of a difference. I stayed in the recliner chair all day, then fell into bed a night. I was misrable mentally and physically. I felt so betrayed by my body. Myeloma is eating me up. Chemo is battling, but gives me side effects. Sickness makes me feel sicker. The fever makes me feel like giving up. I work hard “Counseling the Counselor” … 
Wednesday I sent my chemo nurse an email explaining the situation. I had no energy to call and talk to anyone, let alone go to ER or Urgent Care. I knew they probably wouldn’t see it until after Thanksgiving, on Friday. Yes, I know a cancer patient is supposed to immediately get checked when the fever is 100.3. Did I mention how high mine was? Tues, 101+. Wed, 102-103+. Thurs, 102-103+. Now before you click away, saying you won’t follow a blog of such an idiot, let me tell you my reasoning. 
I did Not have a sore throat. I did Not have a bad headache. I did Not have nasal or chest congestion. I was able to take deep breaths. My chest did Not hurt. I Googled Pneumonia, Bronchitis, etc. I did not have any of those symptoms. I just had a high fever. A cough here and there, with clear phlegm. I had high fevers as a child and most of life, if I had a bad bug. My body always rallied. Over confident, yes, as I am now an immune compromised cancer patient. But I knew it would eventually go down. Kinda stupid, I know… 
Friday, my fever broke, and my Nurses and Doctors called. They couldn’t believe I hadn’t gone to ER. I told them my story. They begged me to go. I said I would. I did. I scheduled an appointment at 2:30, and my son drove me and my husband there. The Dr I saw was so sweet, but so concerned and adamant that I needed full detailed labs, and she was going to consult with both my Oncologists. She was so kind, so caring, so concerned. Off to ER Urgent Care she sent me. In a bed I went. I felt silly, that everyone was over reacting. They ran an IV, and took viles and viles of blood. Some of the containers I never seen before. They were for bacteria cultures. My chest was wheezy, but not concerning.  My fever was down to 99.9 on it’s own. I hadn’t had any Tylenol that day. See, my body did rally on it’s own! 
My labs came back similar to the ones from a few weeks ago, that I took for my 2 oncology appointments. These were remarkably good. I was surprised, and so was the ER staff :)) 
 Actually stronger than my labs at the beginning of Nov!
ANC even higher! Crazy!
And all these Negative…
While waiting for my labs to come back, and consult with the Urgent Care Dr, my son had run some errands, and brought us some light dinner. I asked him for Tomato Basil soup, and half a sandwich. I was feeling ok, and anxious to leave, as I didn’t see a point just sitting there once my labs were back. I wasn’t actually being treated for anything, or on an IV for anything… just waiting to consult, and eventually take a chest xray.
And then it happened… I didn’t get more than a few bites of sandwich down, and not even a 1/3 of the soup, and rumble, rumble, rumble went my lower GI! Omg… nooooooooooo, not here! Not now! C’mon body… you hate me! I hadn’t eaten much since my fever, and don’t recall my last “bathroom biology” at home, so apparently this little bit of food was the all stimulus my GI needed, and Bam, Omg… here we gooooo….  I hollered at Scott and Jim to get out of the way, and they just looked up and said “Huh?, what’s going on Mom?” I SAID “GET OUT OF MY WAY…. NOW… OMG… THE FOOD’S GOING THRU ME!” Yep, I made it to the little ER bathroom, as it was just around the corner from Jim, and I cussed the whole time I was in there. WTH, OMG! Body! You Hate Me! 
10 minutes later I emerge, laughing, but pissed off. I just can’t believe that I can’t catch a break. First one thing, then another. I’m sorry to whine about this, as I know so many are suffering so much more than me, and in such a more serious way, but I WAS NEVER VERY SICK VERY OFTEN, BEFORE MYELOMA, and it’s just so hard for me to be a sickie. I interrupted the Nurse and let her know I HAD TO LEAVE NOW. “SO, SORRY I CAN’T STAY”. I explained about chemo GI side effects, and I “needed to be at home, as “these episodes last for hours on and off, and I NEED TO BE HOME. I’m so very sorry, thank you for all your care and assistance, I need to leaveeeeeeeeee”…. then OMG, here we go again……. “Where’s another bathroom, hurry, fast, where”, I panicked… as the one I had been in, was occupied! OMG body, this is just tooooooooo much! I ran around the corner, out of ER… made it to BR #2. 
That’s it body, I’m done with you. Can’t catch a break. I felt like I was back in the hospital with my 2010 Stem Cell Transplant diarrhea side effects. It was nuts. 10 minutes later, I make it back to my ER bed area, and told the Nurse to let the Doctor know I’m leaving. “Please check me out now! So sorry. Thank you so much. I must leave now. I have a little window of time to drive home, before another episode…” “But Ms Julie, you need a chest xray”, please don’t leave”, my nurse compelled me. “Sorry, you don’t understand”, I smiled… “In my “condition”, I can’t do an xray”! “I can’t take that chance that my GI will explode again, during the xray”, I laughed. “Thank you so much, bye now!” 
I implored Scott to run and get the car, and for Jim to get his slow, disabled legs moving, or he was going to be left behind! Yes, we made it home… barely. I was in MY, thankfully, MY bathroom for another hour and a half… hello Imodium, I need to sleep tonight. I hate you body, and you hate me. 
That was last Friday, November 24, and each day I was slowly better. I still cough, I still blow my nose here and there, but no extreme symptoms. Because I dashed off so fast, the Doctor gave me a RX for the Z Pak, since the Bacteria Cultures weren’t back, and he wanted to treat me for the worst, just in case I did have a bacterial infection. I read the side effects of Zithromax, and said helllloooo NO, I’m not doing that, and chancing more diarrhea! Helllloooo No, I whined to myself. But I came to my senses, and began it, so angry at my body for betraying me. 
But when my blood test cultures all came back negative, the ER Dr said I could stop after Day 4. I know it’s important to take the full course of antibiotics, but he said in my case, shortening one day was ok. Yes, Imodium was my best friend, and luckily, I only need one dose a day to do the trick.   

So that brings me to today, November 30, 2017.
Yesterday, I was curled up in our recliner, and moved the wrong way, or coughed at the same time, and BAM, POP, I heard something clunk on my back left side rib. The same dang place I was sore from last week. Dang it body! Here we go again. I hate you body. And you hate me. Ouch. Big Ouch! I found some Salonpas pads, Bengay, Icy Hot salve, and took an Advil, and went to bed, not a happy camper. But shame on me, as I should be grateful, as I am better, symptoms have lessened, but I just feel so depleted mentally and physically. Sorry I’m just not a patient patient.
So I had a brainstorm! My ol friend Dexamethasone steroids! Yes, I need to take them for myeloma killing properties, but heck, maybe as an anti inflammatory, they may help the tweaked back and ribs! So yes, this morning, back to business, I took my 20mg roids around 7am, and went back to bed, hoping for magic. And today has had a little magic, thank you Dex. I’ve felt better! 

And that my friends, is the end of November for me. 
And so sick of being of sick

I promise I won’t :))

Thank you for reading and caring and following and tolerating, my crazy myeloma stories! Next up, Darzalex infusion on Wednesday Dec 6, and I’ll update you on Dec 7, unless some other lovely drama is post-worthy before then :)) 

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