Changes are Coming, Lots of Stats, and a Funny Story!

10.25.15

So in my quest for NORMALCY, and “quality of life”, I've been sabotaging myself. For a while now.

I’ve officially joined the “smart stupid” club. Yes I’m smart, and analytical. But in my quest to be NORMAL, combined with my FEAR of side effects, I have MASKED (ha! good Halloween pun there), that I am worse off than I thought. Numerically worse now than I was right before my 2010 Stem Cell Transplant. Yep, Stupid is me!

What? How can this be? Well, a few appointments ago, I asked my oncologist to release my unreleased (online) myeloma stats. Kaiser’s policy allows patients to see all their “good” stuff automatically. The “bad” stuff is not released automatically. Yes, I have stacks and stacks of paper results from each appointment. But looking at all my results historically on paper would be unwieldy, as they would spread the length of my house and back! Besides, seeing my life in stats, neatly charted chronologically online, tells "the" story. So before my wonderful doctor left on her unexpected leave, she released (for my viewing), all my previously unreleased results. I now have online access to the full retrospective view of all my myeloma stats- Oct 2009 to present. Wow!

I’ve looked at them, reviewed them, charted them, studied them, analyzed them, printed them, reviewed them over and over, but "IT" didn’t fully sink in until just recently. My early 2010 treatment stats, compared to my current stats, FINALLY impacted me! See, previously I was looking at my INITIAL DIAGNOSIS numbers, NOT my numbers AFTER several months of Revlimid and high dose Dexamethasone treatment, prior to SCT!

This may not sound like much, but it is. My IgA and M-Protein is higher now than mid-initial treatment 2010! Whoa! What?! I’m no where near ok now and haven’t been for a while. I’m worse. And each month I get worse. Myeloma has been slyly creeping back since mid 2013, and I’m in LaLaLand thinking I’m not near as bad as I was in 2009/2010, BECAUSE I was comparing my CURRENT status to my INITIAL diagnosis status. 

Calm down! Yes my Oncology team has been watching my #s carefully, and have been after me all year to switch from Revlimid to another chemo. No one was really "panicked" about my stats, as they were gradually moving up, not not hugely spiking. My regular Hematologist/Oncologist and my SCT Hematologist/Oncologist ENCOURAGED me (each time we met) to switch chemos, so please don't critique them. It's me. Scaredy Cat me. I had enough ok days to convince myself I was doing ok. My upward IgA and M-Protein was somewhat "gradual", not high triple digit jumps each month. I really didn’t think I was “that bad”. Not to mention how my current GI side effects etc, and my overall side effect FEAR FACTOR prevented me from trying a new chemo. Well, I get it now!

I'm a v/isual learner. So after I really studied my stats online, I printed my IgA and M Protein chart stats. I can't describe the impact... just WOW! Oh Boy Wow!! Oh No Wow! Yikes Wow! Here's what I saw. Sorry, it's a lot of numbers here, and it's taken me hours and hours to get this to post correctly here! Look at my IgA from Dec 2009 to June 2010. Then look below from June 2013 to now:

Name Standard range IGA 70 - 400 mg/dL IGG 700 - 1600 mg/dL IGM 40 - 230 mg/dL 12/11/09 5630 323 < 20 12/14/09 5060 328 < 20 12/30/09 BEGIN 1/14/10 DIAGNOSIS            REVLIMID     + 4910  MYELOMA DEXAMETHASONE 316 < 20 1/29/10 3820 302    20 2/4/10 2990 272    27 2/24/10 1090 321    38 3/9/10 1010 313    46 3/22/10 621 274    36 4/5/10 593 270      34 4/21/10 636 317    32 5/21/10 677 276    24 6/4/10 747 300    29  AUGUST 9/21/10 FULL < 25 REMISSION 341     < 20 BEGIN 10/18/10 REVLIMID < 25 MAINT 362 < 20 10/31/10 < 25 341 < 20 12/2/10 < 25 475 < 20 1/3/11 IGA < 25 IGG 551 IGM < 20 2/1/11 < 25 587 < 20 3/3/11 < 25 593 < 20 3/17/11 32 670 < 20 4/4/11 29 617 < 20 5/24/11 34 736 < 20 6/20/11 30 660 < 20 7/21/11 41 676 < 20 8/16/11 44 727 < 20 9/20/11 53 704 < 20 10/16/11 56 647 < 20 11/27/11 100 625    29 11/27/11 76 618    25 12/27/11 97 636 < 20 Name Standard range IGA 70 - 400 mg/dL IGG 700 - 1600 mg/dL IGM 40 - 230 mg/dL 2/23/12 94 620 < 20 3/24/12 93 601 < 20 5/2/12 103 596 < 20 5/30/12 107 613 < 20 JUNE 7/16/12 BEGIN 87 break  from 508 REVLIMID < 20 8/28/12 89 538 < 20 10/22/12 101 693 < 20 12/10/12 125 635 < 20 Name Standard range IGA 70 - 400 mg/dL IGG 700 - 1600 mg/dL IGM 40 - 230 mg/dL 1/31/13 173 624 < 20 4/3/13 305 595 < 20 *6/6/13 487 583 < 20  HERE WE GO- THAT 7/26/13  OUT    OF WAS 927  REMISSION  FAST 501 < 20 9/3/13 1110 469 < 20 9/13/13 1270 456 < 20 OCTOBER 11/7/13 BACK        to 1430 TREATMENTS 392  REV + DEX < 16 12/3/13 1890 397 < 16 1/30/14 1190 301 < 16 3/31/14 1390 309 < 16 4/29/14 1150 333 < 16 5/29/14 1110 296 < 16 6/20/14 780 267 < 17 7/25/14 1110 335 < 17 8/25/14 979 279 < 17 9/22/14 1140 287 < 17 10/22/14 1200 306 < 17 11/19/14 1180 317 < 17 12/21/14 1070 264 < 17 Name Standard range IGA 70 - 400 mg/dL IGG 700 - 1600 mg/dL IGM 40 - 230 mg/dL 1/13/15 1340 299 < 18 2/23/15 1250 269 < 18 3/25/15 1360 328 < 17 4/20/15 1080 257 < 17 5/18/15 1320 254 < 17 6/2/15 1570 262 < 17 6/16/15 1630 291 < 17 7/20/15 1620 300 < 18 8/20/15 1530 258 < 18 9/13/15 1770 268 < 18 10/18/15 1890 240 < 18
My current IgA of 1890 is the highest it’s been since mid Feb 2010 (before SCT) and Dec 2013 when I was fully out of Remission. And here’s my M-Protein stats, which tells the same story with a different variable: M-PROTEIN, SERUM 0.00 - 0.0g/Dl 12/11/09         4.30 12/30/09         MYELOMA DIAGNOSIS JANUARY     BEGIN REVLIMID AND DEXAMETHASONE (+ others) 01/29/10         3.03 02/04/10         3.06 02/24/10         0.80 05/21/10         0.48 JUNE             CYTOXAN IV JUNE             NEUPOGEN INJECTIONS JULY             MELPHALAN IV JULY 5          AUTOLOGOUS STEM CELL TRANSPLANT 08/18/10        0.00 (ZERO) AUGUST 2010 = FULL REMISSION! YIPPEE! 2010 - 2012 I remained on Rev chemo for almost 2 years... 2012 - 2013 Break from myeloma meds Shortly after taking a break from meds, myeloma comes back ------------ OUT OF REMISSION, HERE I COME 07/26/13         0.72  08/22/13         0.68 09/13/13         0.96 10/14/13         1.05 11/07/13         1.10 12/03/13         1.40 01/02/14         0.84 01/30/14         0.86 03/02/14         0.79 03/22/14         0.97 03/31/14         0.99 04/29/14         0.81 05/29/14         0.90 06/20/14         0.78 07/25/14         0.85 08/25/14         0.70 09/18/14         0.82 09/22/14         0.82 10/22/14         0.94 11/19/14         0.91 12/21/14         1.14 01/13/15         0.98 01/26/15         1.25 02/23/15         1.20 03/25/15         0.96 04/20/15         1.14 05/18/15         0.88 06/02/15         1.13 06/16/15         1.42 07/06/15         1.19 07/20/15         1.26 08/20/15         1.01 09/13/15         1.37 10/18/15         1.58 Same story. Higher now then early stages of initial treatment, and back in Dec 2013. As I’ve ranted on previously, I’m not the bravest filly in the herd and I haven’t wanted to deal with new and yuckier side effects. But it’s time now and I know it. So when my Oncologist suggested switching meds, I agreed. Cowgirl up Julie. We discussed Velcade, and I suggested Kyprolis, as I’ve heard so many awful stories about so many suffering with debilitating Neuropathy from Velcade. So I said let’s skip right past Velcade and go directly to Kyprolis. I’m very fortunate with my insurance that I have choices, and if I can, I pick the most effective treatments, with the least awful side effects. And I have GREAT Doctors, who analyze all my options with me.  So Revlimid, you’ve been a loyal ally, battling Myeloma for me since January 2010, and I thank you for saving my life. For me though, you’ve grown battle-weary and your myeloma killing power and strength has waned. So good-bye Revlimid, hello Kyprolis. I’m scheduled to begin IV infusions on Nov 2. Yes I’m worried about how the new treatment will affect me, but I know what I have to do to suppress Myeloma, before it’s “too late”. Hello chemo lab, scaredy cat is limping in ... Ok, as promised… a funny story each post:  So 6 YEARS ago this month I had my normal, annual “well check” blood tests. Well that “well check” turned out results that I wasn’t so “well” after all. My GP sounded the alarm via voicemail messages that I needed to come back for additional blood work. Whatcha think I did? Yep, put it off, actually “ignoring” the messages at first (stupid!). Not worried, thinking it’s all a mistake, that the lab technician read my results wrong, or it was just something MINOR amiss. But with Jim’s “nagging” (loving insistence), I went back and did more blood tests. My GP called quite concerned again… and again. And each time, I didn’t respond exactly immediately. You know all those “adult excuses”: too busy, too tired, too much to do, too much going on, too many students to help, too many animals to take care of, too much FUN to have, too much of "this and that" to worry about something that I thought would be “nothing”. Ya, I was DUMB!!! But honestly, I really didn’t think much was up. Call me SMART-STUPID! So what was all this my GP urgently wanted to discuss with me? Yep, my WBC’s were alarmingly low, high, abnormal, unusual, flagged, etc, and I was VERY ANEMIC! Dangerously anemic. What? No! Not me! So anemic he mentioned the word TRANSFUSION. A trans-what? And I needed Platelets too. Plate of what? I scoffed at all of this, and again, really thought someone was reading my results wrong. But I do remember that I did start to review all my unusual body behavior in those last 2 years, as I did have A LOT of crazy bleeding, and weird side effects I would come to know as "Hypercalcalcemia"! If you are squeamish about body details and physiology… STOP reading here!! especially men… Actually the Anemia made sense. A lot of sense, as I had been “bleeding out” for quite some time. And by bleeding out, I'm referring to female plumbing.. and my nose. A lot of nose bleeds! I thought I was having severe nasal allergies as I would get random nose bleeds all the time. And I mean nose bleed rivers that just wouldn’t stop! Some days I couldn’t even go into work, or anywhere, I was bleeding so much, "north and south". Many times I would be in my office, and think my nose was just doing what noses do, and I’d grab a Kleenex, and boom, BLOOD! Or my students would tell me I was bleeding. Well one day, one appointment I was meeting with a young man and his dad. They were new to the USA, so there was a bit of language difference. So when the young man motioned for me to wipe my nose, I got it. I reached over to my Kleenex box, wiped my nose, and yep, bright red. And whenever this happened, no matter how much pressure I put on my nose arteries, I bled and bled. Can you even picture me still trying to conduct counseling appointments holding Kleenex up to my nose? Yikes, what a piece of work I am. SMART STUPID! Well the story gets worse.  Back then, for about 2 years or so, I thought “mid life” had hit me early as I had crazy erratic female bleeding. (Sorry if TMI (Too Much Information lol). So I only wore black pants back then. Well when this young man and his father and I were done consulting about his upcoming transfer to a prestigious University, they stood up to leave and I did the same to walk them out. Well when I stood up, I HEMORRHAGED! OMG I thought, I can’t move, or I’ll create a mess in my office and beyond! I was so shocked, but didn’t of course want to let on what was happening! I sat back down (ugh, squish), and pretended that I needed to print another document for them. I remained sitting, told them how wonderful it was to meet them and shook their hands good-bye while remaining seated. So awkward! Guess what color chair pad I had… I’m laughing writing this, reflecting on how ridiculous I’ve been in my life… just trying to be NORMAL!  Well, needless to say, I was beginning to accept something must be up. I had lost a lot of blood 2008-2009. But I rationalized it away as nasal allergies and mid-life women’s issues. Stupidly, I thought I could solve it by making a few dietary changes lol. I told my Dr I would eat BEEF for iron and drink more RED juices to replace my blood loss and blood issues. Sheesshh what goofball I was….or does that spell DENIAL? And STUPID. Yep, I’m a premier member of the SMART STUPID CLUB. And so... back to now. Honestly, I’m kinda scared about my new journey. But trying to be brave. I’m probably over reacting, and hopefully my side effect fears are unfounded. Have I confessed what I am most scared of? I can handle most anything except throwing up. It’s just so awful to me. I’ve read there’s nausea with Kyprolis… ugh… Yes, I will ask for all kinds of anti-nausea meds, like I did for Cytoxan, and Melphalan and during my Stem Cell Transplant. Wish me luck, and I’ll report in on Nov 5, if I’m not hugging “Porcelain John” 24/7 … Happy Halloween Everyone!  Gentle Carousel Therapy Mini Horses
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!