Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Saturday, December 8, 2018

Rain, Radiation, Reality

Hello 11.8.18

You know that song... "It Never Rains in Southern California"...
Yep, it rarely rains when it "should" in drought stricken, fire ravaged CA , but when it does, it's on days when super important things happen in my life,.. LIKE MY FIRST RADIATION APPOINTMENT!!

And yep, not at my local, close by medical center either... And, my luck,... my appointment was first thing in the morning, which is super challenging (in many ways) for me ANYWAY, but especially on a raining buckets day, that requires battling the crazy LA freeway drivers!!  You'll see below in an email, that my Dr asked me not to cancel (lol she knows me too well!). Very sweet, but also reading between the lines... tells me how "serious" my situation is. Yes, rain or shine, I need to go, I kept telling myself.

I just cannot get over all the "little" challenges and ironies in my life...  (Yes, whine, whine, whine I whine... :)) But I keep it all in perspective, and ALWAYS remind myself how LUCKY I am to have all the good fortune I do on so many levels... compared to so many... But yes, I do still allow myself a few "pity parties" here and there :))


If you've been following my story for a while, or know me personally, you know that myeloma and treatments really changed my lower GI system...., Really really changed it, and made it super unpredictable!... so that's why "early mornings" are particularly challenging for me, as I won't get on the freeway, or drive too far from my house (specifically my bathroom), when my GI system is unsettled or not "cleared". In other words.... I never want to take the chance that I'll be on a freeway when my body decides to "cleanse"!

Unfortunately the scheduling and procedures for the initial Radiation appointment consult, mapping and first treatment is not very flexible, and of course landed on a Thursday, which often is my "worst chemo crash day". For some time now, I take all my meds on Mondays: 40mg Dex, which is 10 steroid pills, then 1 Velcade shot in the belly at the chemo lab, then at home, 8 Cytoxan pills at 50mg each, which is 400mg!!. Lol, that's a lot of meds, right! So by mid to late Wednesdays, and for sure Thursdays, I'm feeling kinda yucky and what my GI has in store for me, I never know!! Unlike Revlimid, which gave me scary, unpredictable, often volcanic diarrhea, this current cocktail often "corks" me up, and I never know if and when the "cleanse" will happen. So if I have early morning appointments, I make sure the day/night before, I don't eat much, or I eat early, and "hope for the best in the morning"... and for sure... I DON'T EAT OR DRINK BEFORE GETTING ON THE FREEWAY!!! Ugh, it's all so complicated, and so funny, as "normal people" really don't give these things a thought. But I sure do, as I've had too many close calls, and near disasters, almost not making it home or to a bathroom in time!!!!  If you want to read some funny "close call" stories, look back in my blog post titles back in 2013, 2014, 2015

But I braved up, and accepted the crazy timing of all of this, and the rain, and had my wonderful son Scott pick me up at 7:15am to hopefully make it to the 9:00am appointment.

So sweet my Dr did not want me to cancel
She knows me too well :))


It was totally pouring rain when we left. I had Scott drive his big work truck, so we'd have more metal around us, protecting us from all the crazy CA drivers, that just don't know how to safely drive on rain slick freeways. But I've learned to just let go, and let things happen, and hope for the best. After 9 years of battling myeloma, with so much out of my control, what's a little rain and freeway insanity. We made it there and back, without getting involved in any of the many accidents we saw, including overturned cars, as well as the car right in front of us, in the carpool lane, dying, coming to a complete stop. Thank goodness we were the vehicle right behind him, as you can imagine a what a traffic nightmare a completely stalled car created behind us!! Scott does so much freeway driving now, it wasn't a big deal to him. So fun to experience the role reversal now in our lives, with our adult kids taking care of us now!


So to make a long day, long story short, we first met with the Radiology Technician. Such a wonderful caring man, who explained the whole process in detail, took more scans of me, marked me up with a red sharpie marker, explained I'd be getting about 5 marker tattoo dots, then the scans would be studied by my Dr, and she would make the final approval for where to Radiate, how much, and when, etc. We then met with my Dr, she discussed my situation in further detail. She brought up my scans, and showed me all my holes, lesions, tumors, etc. It's all surreal to me. How can I, me, who used to be so active, have all these cancerous things in my bones? Lesions all up my spine. Lesions in my ribs, hips, femurs, pelvis, hips, etc etc etc. And a sizable plasmacytoma in my Sacrum, tailbone... this all must just be part of a looooooooong, crazy, never ending movie I'm in.... I just can't relate to my situation, and I don't know if I ever will...

Wow, really myeloma!!

Yes, these written reports do make it "real" to me
Can't deny the damage when I see it like this

So after all the scans, mapping, discussion of where my "worst damage" and pain is, the decision was to Radiate my pelvic, hip area, my lower spine, and the crazy plasmacytoma in my sacrum. My Dr also confirmed that all my insane back, hip, pelvic, left leg pain in July, Aug, Sept, was most likely that nasty big plasmacytoma tumor pinching, putting pressure on my sciatic nerve, and surrounding areas. I'll be glad to kill that thing off!!! And radiate the heck out of all the other areas where myeloma thinks it can remain cozy and comfy in my bones!

My new "office" for 5 days

Yep, this big amazing machine 
will Radiate me for 5 treatments.
First was on Thursday, 
then went back on Friday for #2,
the remaining 3, next week

I love Science. 
Not smart enough to understand how all this works,
But I trust my Oncology team, and all the 
Drs and Techs working on me!

Although I knew the answer, (and have asked previously), I asked my Radiology Oncologist if I really was "fragile like glass", and shouldn't do any of my favorite sporty activities, like horseback riding, skiing, tennis, etc,.. She nodded, and said, "yes it's just too risky... you really shouldn't"... I knew she felt bad confirming what I asked, and what I've known for quite some time. Can't even remember when I last did any of those... well I can, but I don't want to...

As I write this, I sipped some tea wrong, and coughed and sneezed, and of course braced myself, and hoped I wouldn't fracture something like I've done so many times! Just awful to have to worry about all the "potentialities" of damage 24 7. But I've experienced the excruciating pain from inadvertently injuring myself all too many times, and take all the precautions I can, to not injure or damage myself again. I reflect back on all my posts, where I was suffering so much from what I thought was pulled muscles, pinched nerves, etc. Now I know that it was most likely fractures due to all the lesions I didn't think were there... 

So that's my Radiation story in short. It's treatment number 10 thousand million trillion. In other words, I've had so many lines of treatment, chemos, etc, in the last almost 9 years, that I laugh at how much I've been through. One of these days I'll add all it up. Myeloma is so different than most cancers, as the treatment is never ending, the damage is ongoing, and we as patients live moment to moment, hoping our current cocktails stave off myeloma for as long as possible. I feel like my life is on hold, yet at the same time, racing forward.

I'll find out how Velcade Dex Cytoxan is doing for me in a few weeks, as my next "assessment" Dr appointment is Monday Dec 17. In the meantime, I down my dozens of pills, submit to weekly belly injections, and now to whatever the effects of Radiation are. Isn't it amazing what the body can tolerate, and how all this stuff can keep us alive, albeit, temporarily. Myeloma is just so different than "curable" cancers. In my case, I must continually treat, or myeloma wins... 

Happy Holidays everyone. Hoping whatever your challenges are, you can still enjoy festivities with those you love and enjoy being with!



Wednesday, November 28, 2018

Radiology Consult, Pills and more Pills, My Myeloma Life

Hello 11.28.18

And the anniversary countdown begins. Well it's already begun, as this time of year, I can't help but think of what I DIDN'T KNOW THIS TIME 9 YEARS AGO! Yes, Wow, 9 years ago, I was in the process of being diagnosed with Multiple Myeloma. Multiple Who? Multiple What? Myeloma? Not MY-eloma! Yes, MY-eloma. Crazy, random, incurable Myeloma became my new identity 9 years ago 12.30.2009...

But this time, 9 years ago, I just thought I was extremely exhausted and fatigued from working and doing too much. That I was "only" anemic, weak, breathless. I just thought my crazy bleeding out was because of "allergies", and "that time of life for women"...  I thought all my other "weird" symptoms were just "temporary" weird feelings from "getting older", as I had just turned 50. ahahahaaaa..... I was so naive, so ignorant, so in denial. But of course I was. I was always healthy, and there wasn't any cancer in my immediate family. So I never gave my symptoms "serious" thoughts! December brought many appointments in medical departments I never ever would have connected to me!!!


I'm leaving soon for another Radiology consult, planning appointment. So I will continue my story later today... Fortunately, my extreme bone pain has subsided a bit. Still there. But not the intensity of July, August, September! I never want to feel that way again... but who knows what Myeloma has in store for me.... Looking into that "crystal ball" may not be good a idea, if we can't alter the outcome, right?!

CT scan day after my birthday

I've had so many scans and xrays this year
that I am probably radioactive by now :))

Hello 10 Dexamethasone steroids,
8 Cytoxan, Cyclophosphamide pills-
every Monday
Along with daily Acyclovir,
daily Mepron (Atovaquone),
And B12, D3, low dose Aspirin
I need to take a picture of all of my colorful pills!

Ok, I'll be back to update you with what the Radiology doctor recommends for my holey, lesions, tumorous bones!

=============

So I met with a very nice and knowledgeable Radiology Oncologist today, who noted that I have so many lesions, holes, plasmacytomas etc, that "we can't radiate your whole body" lol .... "fortunately most of them are smallish, but the concerning ones (larger) are in your spine, sacrum, hips, pelvis, etc, where you are experiencing all your pain" .... and yes, the horrible, horrendous, shocking, debilitating, pain I experienced in July, Aug, Sept, was related to pinched nerves from the spinal tumors, etc. Radiation for myeloma is often referred to as "spot welding" lol

Unfortunately, the CT scan report was not processed yet for her viewing today, as I had the scan the day after Thanksgiving, at private radiology lab, outside of Kaiser, so they are waiting to connect all the dots. Fortunately, the CT technician had given me a CD copy of the CT scan, so I passed that on to my radiology oncology doctor today. This happened as my appointment today was bumped up a week, from a previously scheduled appointment for next Wednesday. I'm not upset that the report wasn't available, as the holiday weekend complicated things, as well as the earlier appointment, as well as using an outside of Kaiser lab.

After almost 9 years of this crazy adventure, I hardly get bothered by much, as Kaiser is so good at providing services, and getting things where they should be, when they should. I've always received my specialized chemo (pill) deliveries expedited, accommodations for appointments are always made, the staff is always so friendly, caring and quick to fix any issues that come up. In other words, I have been very very fortunate to have amazing care from all perspectives- doctors, nurses, staff, pharmacy, etc! And I won't even mention how unbelievable my insurance coverage is, as my heart breaks for so many patients I read about that have lousy coverage, or super high copays...

So the next step is a multiple appointment, hours long analysis, mapping of where I will receive the radiation.


Yep, myeloma eating up my bones, causing holes, tumors, lesions and pain, is all too real. I just still can't connect all this with me. I always feel like I'm consulting with "colleagues" regarding someone else.

Can you believe I've been writing about all my adventures for 8, going on 9 years now, and that I was told "something very serious was wrong" with me, way back in November 2009. How crazy is that!!! Yep, Myeloma is the "gift that keeps on giving"... forever and ever... continuous treatment, no breaks... unbelievable how my life has changed...

Hope all is good for all of you, and if you're a warrior buddy, your treatments are livable and effective. I always love to hear your status, treatments, side effects, and how you're doing, so never hesitate to comment! Thank you everyone for all your good wishes, support and comments!

Goodbye November, see you in December friends!





Sunday, November 18, 2018

Feeling Like Glass

11.18.18

Happy almost Thanksgiving everyone!

Thank you for all your kind comments, emails, texts, calls of support. Yes, body betrayal, no matter the disease, is so very tragic. My heart and head just hurts so much from everything we are going through, and for everyone else with Unwanted challenges.

I used to feel so strong, and had a sense of control over my life, choices, decisions, actions/consequences. I was so very careful and cautious with most all the choices I made in my life. I never had that need for an adrenaline rush, extreme sports, heart racing type activities or challenges. I've always sought peace, happiness, serenity, calm, fun and mental and physical health for me, everyone. My life long career as a Counselor, only solidified my natural ability to help, heal, change, that which was affecting me, mine and those that sought my counsel. Now, life is a wild ride, emotionally and physically, with little prediction of what each day holds, and little ability to affect needed change. I tell myself all the time... "It is what it is"... "You cannot control the things you cannot control" ....  Accept. Understand. It's the disease. It's body betrayal. Move Forward. Let it go. Breathe. Breathe deeply. But then I think of all the suffering of humans and animals in the world, and I admonish myself for my frustrations, grumblings, and sadness.... Onward Julie...
Saw this too late to order! 

Yes, Thanksgiving day is also my Birthday. Such a milestone for me. I was 50 at diagnosis, December 30, 2009. My doctor apologized when delivering the news, saying "I was so young". "Most are diagnosed later in life"... "and you're high risk", "with an "aggressive" type of Myeloma"... I understood intellectually, but psychologically, denial became my middle name. I knew the terminal, incurable facts about Myeloma, but of course I was smug enough to "assume" I would pummel myeloma always, and live forever. After the success of my initial treatments and stem cell transplant, I still felt I had a chance to live to be an "old mare". And the fact that I didn't have the crazy "typical" myeloma bone pain, gave me even more confidence, "that I was different". Ha! What a joke... on me... Myeloma was deep inside of me, playing all kinds of tricks, and the 9 years of cellular, chemical fighting is now really taking a toll on me... physically and mentally.

But I fight on, super proud of my "Legend" status of 9 years of beating myeloma's odds, while still rather functional lol. Yes I have hair, yes I look pretty good considering, but the bone pain has given me a bit of a gimpy walk now.. Sometimes, not all the time. Next up, a cane... 

Tomorrow is Dex Steroids, yep full throttle 40mg, paired with my weekly Velcade shot, paired with the lovely bright blue Cytoxan Cyclophosphamide pills. 8 prescribed weekly, and so far I have done 3 the first week, 5 the second week, 6 last week, and not sure what I will do tomorrow, since it's Thanksgiving and my Birthday on Thursday. See steroids carry me for about 24, 36 hours. Then the yuck and crash comes. So Wed and Thurs will not be great days :(( What's your vote? 6, 7, 8? I will have to confess to my Dr on Monday Nov 26, what I have done, .... But if my labs look ok, or even good... how interesting will that be... can't wait to find out. I did them a week ago, should have waited until today, with an extra week of treatment...

Next up... 






Not my horse, not my picture, but so heartbreaking :((
The CA fires were so incredibly devastating-
I count my blessings and our good fortune every day!

Happy little rescue doggies

And big doggie Abbie pretending to be a little doggie


Have a wonderful Holiday with your family, stay well, healthy, happy and may your challenges be by choice. 

And lest I forget to mention, it was this time, 9 years ago, that my innocent annual physical and blood tests screamed something was waaaaaaaaaay wrong with me....  the wild myeloma ride was just beginning...






Thursday, November 8, 2018

Just Too Much to Handle... I'm Really Not That Strong

11.8.18

Hello...

I'm just so exhausted, overwhelmed, kinda broken on several levels, hurting, aching, still coughing, mentally fried, and just overall beat up....

See, yesterday I spent most of the afternoon in Urgent Care for my hubby... I haven't shared a lot of his medical woes here, as I devote this blog to my Myeloma journey, and all things related to my Myeloma status, not all the "other" life adventures and challenges I have.... but as Jim's body continues to fail him, sabotaging and betraying him physically and mentally, it is affecting us, me, more deeply all the time. I can't keep hoping things will "get better". I must accept our reality.

The crazy thing is we are BOTH declining more quickly, more recently, in the last few years, months. Things seem to be changing fast. I didn't expect it. I should have. He's significantly older than me, so I knew he'd have "old guy" medical issues as he aged, but he was always such a rock, so strong, so capable, such a doer... of everything. I just didn't expect his body to fail him so completely as it has, is... Yes, I expected him to slow down, but I did not "expect" his body to completely betray him as it has... and the effect on both of us is monumental...


I have to admit I was quite "spoiled" all our lives together, as he was such a hard worker on so many levels. He loved to work and care for others. In business, around our ranch, shopping, cleaning, gardening, building, fixing anything and everything. Taking care of everyone, human and animal. Jim did it all. There wasn't anything he couldn't do, and he wanted to do everything for our family and for anyone in his life. I worked, he worked, our life worked. He worked so hard, taking care of himself was last priority. Over time, our kids and I noticed he'd "forget" to eat and hydrate, as he was always so busy doing doing doing. He'd "Forget" to take care of himself when we were gone at work and school. He'd be so busy doing so much for all of us, he'd neglect himself. At first we joked and laughed about his "forgetfulness", then over time, it wasn't so "funny" anymore, it was worrisome. He'd be so busy, on the move constantly, chores, shopping for all our household needs, he wouldn't stop until all of us were home. He loved doing and being busy... He'd say he "didn't want to eat alone"... But eventually, it all caught up with him.

2012

Jim has survived many serious health issues himself. He's had several serious blood clot incidences. Early in our relationship, he fell while learning to ski, and the binding hit his right lower leg hard, resulting in vein damage and blood clots in that leg. I don't think either of us realized the seriousness of it at the time. He was hospitalized for a week, then all was "fine". About 8 years later, he had another incident where he was hospitalized for several days, then was "fine" for years. Then in 2008, a year before I was diagnosed with Myeloma, he almost died from blood clots in that same leg, that also migrated to his lungs. He was hospitalized for a week, and put permanently on Coumadin. He is also a 19 year prostate cancer survivor. He always thought he'd be the one to "die" from cancer. As a result of all his hard physical work all his life, he has spinal stenosis, arthritis, bursitis, rotator cuff issues, he was supposed to have knee replacements, etc. But he always worked through everything, and had a very high tolerance for pain. To a fault. He believed the more you hurt, the harder you work, to work it out... ignore pain, always keep moving, doing.

2013

Over time, his body finally rebelled. His body told him to slow down, but his philosophy did not. We'd come home from school and work, and see him limping around, still doing a ridiculous amount of ranch and household chores. We'd try to get him to slow down, rest up, relax... but that just isn't who he is. All the beautiful pictures of our yard I've posted in this blog, are because of Jim's hard work and "green thumb" talents. His legs got so weak, the pain so intense, he just couldn't do what he used to do. Soon he didn't have a choice, he was forced to slow down. We also noticed "weird" cognitive things. His communication changed. We laughed at that too, and called it "Jim speak". He started not using nouns. Think about it. Try communicating, without nouns.... We'd laugh. And try to figure out what he was trying to say. It was comical. He'd ask, "are we going over there, for that, with them, to do that thing?" No nouns. He continued with all the chores, almost too habitized. We also realized his hearing was going, going, almost gone. We got him hearing aides several years ago. He slowed down even more. Was more distracted, things that used to come so easily to him, were now confusing. His legs caused him even more pain. He developed "venous ulcers" where the blood clot damage was. He had severe, disabling pain in legs. He was forced to slow down, and we took over more and more of the chores, more and more of everything he did... He fell several times, and had difficulty getting up on his own... his ability to do what he used to do... has all but disappeared... he has declined exponentially, last year, and especially this year. His body and mind have completely failed him, and it's so so so very very very sad... and the impact on all of us is monumental...

2011- Our first lake trip after my stem cell transplant
See my darker hair under the fake hair hat :))


I really wasn't going to write this much....

Anyway.... long story short... I have become his "caregiver", along with our kids, and kind offers from dear friends, home health from Kaiser, etc,. All the chores he used to do, others do now. Basically everything he used to do, he cannot. He tries hard to do some of the things he used to, but it's just not possible for him. As a result, I am exhausted, overwhelmed, and have a new reality on my situation and his... Yesterday, we spent the afternoon in Urgent Care for him, for terrible body bruising and pain, as a result of a terrible fall he had last week. I was going to post a picture, but it's just too shocking...

While pushing him in a wheelchair, and navigating his medical care for him,.... reality completely slams me, again... I realize how far "gone" he is, and how beat up I am from the ravages of myeloma, chemo treatments and bone pain from all my tumors, lesions, plasmacytomas, fractures, etc,...  I can't fully care for him, and he can't care for me. We're struggling to care for ourselves, let alone, each other, as we once did... It's really so crazy, so sad, so not what it used to be. I tell the DRs and RNs we are so different now, so not who we used to be, .... Our bodies have failed us, in different ways, and I must accept how "ill" we both are, accept we are not getting better...  as neither of our situations are "reversible"...

I always remind myself of my motto/quote I live by: "You Can't Control The Things You Can't Control"... Things are what they are. We can treat it, but we cannot "change" it. I analyze everything, try to understand it all, and deal with the emotions that come up as a result. Yes I get angry, sad, frustrated, and yell at the Universe- "Why Me"! But ultimately, I can't change what has happened to us... I just move forward,... One Day at a time, One Issue at a time...

2018

The reality of my 9 years of being sick continually, hits me me more and more all the time. My longevity is amazing, but I just can't do what I used to. I try, I "sign up" for things and have moments when I think I can be who I used to, then I am humbled. Humbled by how "sick" I feel so often, and how ridiculous it is to push myself, when I shouldn't. I have pain like I never had before. I fracture bones now with just a cough. Which by the way, the story I told you in my last post about my most recent cough, which brought me to Urgent Care because of the excruciating pain,... was in fact confirmed that indeed I did FRACTURE a Right side Rib!


And I have more pain in my hips, legs, back, etc, all the time. I think I've had this for a while, but it comes and goes, since I do the 20mg or 40mg steroids each week, and that gives me a "fake reprieve" from the pain, tricking me in to thinking I'm more ok than I am. Plus I still think Zometa triggered something, as it seems all the pain revved up since that terrible initial reaction in July,.

So all this brings me to so many realities of my life. I am still and always so very grateful for the "good health" and "good times" I still have, but I am realizing more and more, 9 years of Myeloma has taken it's toll, and I must accept my future reality... as my Pet CT Scan, MRI, xrays, etc, don't lie. 

The good news in all of this, is that Velcade and Cytoxan-Cyclophosphamide is not causing me extreme side effect drama... yet lol, as I am still not taking the full dose of Cytoxan, as with the rib fracture, and other bone pains, I just didn't want to take the chance of "getting sick" from the full dose, and fracturing something else, if I got sick! The pills are 50mg each, so the first week I took 3 pills, which equaled 150mg, then this past Monday I took 5 pills, which equaled 250mg. Go me lol! I did find studies online documenting low dose is quite effective... but we'll see if I'll up the risk, and take more this coming Monday... will all depend on how much bone pain and rib healing I have. But then again, my Birthday and Thanksgiving is coming up, so I certainly don't want to suffer that week! Ugh... why, why, why... I'll never know... so one day at a time, one challenge at a time... and I absorb my reality more and more each day....

Hello 5 pills this week
with bearable side effects

Thank you Velcade for not causing me 
horrible Neuropathy or other awful side effects

And as I wrote all this...
I've been watching the news all day about the horrendous ambush shooting of innocent people at the Borderline Country Dance Bar and Grill, and also the awful fires burning up homes, neighborhoods and lives.... In light of all of these tragedies, my challenges are minimal... I feel sad about what has happened to me and Jim, but we are here, have our life, our family, our home, amazing medical insurance... I am grateful always!



Here we are, riding in our local parade, 1983








Saturday, November 3, 2018

Seriously Myeloma... Up Down Up Down, Good Bad, Good Bad...

Hello 11.3.18

Just a quick side trip from my usual "On the 8's Posts" as I just cannot believe my "Bi-Polar" life.
Seems like Myeloma loves to play tricks on me, giving me moments of normalcy, then ripping that quickly away :((

If you follow my blog regularly, you've experienced all the crazy extremes in my life. From debilitating side effects, illness and pain that tests my spirit beyond what I think I can handle, to fun adventures that don't fit the image of someone with terminal, incurable cancer. I just shake my head, take deep breaths, and try to accept and laugh at my circumstances.


Which brings me to this post, as October appeared to be mostly fun fun fun, with Myeloma in the rear view mirror, and nothing like my July, August, September, which were truly challenging months! ... Well, most of my months, weeks, days are challenging, but I've learned, that for me, PAIN is what brings me to "my edge". The insane side effects and backlash pain I experienced from Zometa, to the absurd bone, nerve, muscle pain (from perhaps Zometa triggering something?), or just all the myeloma lytic lesions, plasmacytomas letting me know they're there?, were all just so unbearable, bringing me to my brink... And then...suddenly, I'm briefly able to feel well enough to participate in a few wonderful events...then side effects, illness ambushes me again...

Yes, what happens in my life are unpredictable, brief moments of functionality allowing me to participate in "real" life. I can't control the timing of my medical dramas, and sadly, I have missed so many wonderful events this year, especially family, friend wedding events. Myeloma treatments, pain, and illness have ambushed me at the worst times. Then suddenly, inexplicably, the dark cloud passes and I'm able to participate in life. I can't control the timing of things, and I'm stunned when things work out, and also when they don't...

So after the last minute shocking ability to go on the cruise, I got sick. (Not too surprising, right?!) I was ok, then not. Fortunately, I recovered enough to participate last Saturday in Bark For Life, and be their featured speaker. I was not fully well, but ok enough, with the boost from steroids. Up Down, Up Down. Good, Bad, Good Bad... seriously ridiculous!
All seemed to be improving for me. My horrendous leg, bone, hip, etc, pain was ebbing and subsiding.. my headcold was slowly disappearing, and I braved up, and took 3 of the 8 prescribed Cytoxan- Cyclophosphamide on Monday, and had limited side effects from that...


THEN BAM! Wham! Backlash! While walking down my hallway on Tuesday, I coughed. Not a deep cough. Not a big dramatic cough, but a cough. I usually stop and bend to cough or sneeze, but this time I didn't... POP, CRACK, SNAP! I heard and felt a horrible, knife stabbing, twinge on my Right side ribs... I couldn't believe the searing pain, but I kept walking, doing some stretching and bending, trying to work out the pain. But the pain and tightness gripped me deeply. Fortunately, I still had the afterlife of 40mg Dex steroids in my system from Monday's Velcade and Cytoxan treatment day regimen, so I knew that was helping dull the pain and inflammation... but I knew "something bad" had just happened.

So when Dex began to wear off, PAIN moved in FAST. And every time by body wanted to cough, the searing pain was just unbelievable, unbearable. I've finally learned to start medicating quickly, not waiting to see how it bad it is. I'm now ProActive, not ReActive, as pain is difficult to get control of... So as I've mentioned before, I start with the lowest dose pain meds, to see what helps, so I don't kill off my kidneys and liver... but Low Dose just doesn't cut it anymore. I went back and forth with Tylenol, and Advil, to Flexeril to a 4mg Dex, with only little relief of the excruciating pain. So yesterday, my son drove me to Urgent Care, as I knew I needed to be seen. I've become such a "regular" there, it's not even funny.

Exam, Xrays, discussion of my complicated situation. Is it bone issues? Is it muscular, nerve? OMG, the pain! And the result, yep, another fracture, crack, and of course nerves and muscles involved too. The Dr meeting with me was very thorough, (actually, she may have been an NP), so she said she will consult with Radiology, and send me an email with more detail...  She offered me stronger meds and I accepted, but haven't used them yet, as yes... you know it... I fear new side effects.  But I think I will try Tramadol again, or maybe start with half a Norco, as regular Advil, Tylenol is a joke right now... oh, and the Pain Management Dr I met with last Monday gave me Gabapentin for the crazy leg nerve, Neuropathy pain... My medicine drawer is hilarious with all the bottles of meds~


In the meantime... suffer, suffer, suffer continues to be my middle name... but I am of course grateful for all the good times I am still able to have, all the amazing people in my life caring about me, and for amazing insurance that allows me to just show up and be treated in detail... Yes, perhaps 9 years of Myeloma ravaging my body is catching up with me...

Here I am at Kaiser Urgent Care
just before Xrays,
showing off my crazy bruise from my last blood test.
 And yes, I always toss a little make up on and fluff my hair,
as that just makes me feel better
no matter how awful I am.
I always try to find humor and light 
in all this crazy darkness...
I was in intense pain here... but-
"Fake It Til I Make It", is another motto of mine :))

Thanks myeloma for my crazy making, bi-polar life. Things are certainly never boring! But I would prefer less drama, and more calm please...

Up next on Monday: 40mg Dex steroids, Velcade shot, Cytoxan Cyclophosphamide pills... hmmm I'll be brave and take 5 this time... or should I be really brave and take the full dose of 8?? I wonder why it's not one a day, like Revlimid, Pomalyst?? Must be the all at once punch that makes a bigger cellular impact??..





Sunday, October 28, 2018

Yes I Got Sick, Then This Wonderful Event Happened, and Adding a (New to Me), Vintage Chemo

Hello 10.28.18

It's Goodbye October, Hello November!

Inching closer to my 9 year Myeloma Diagnosis Anniversary! Wow! Becoming more and more surreal, unbelievable, crazy, amazing that I am still here!.

I just can't believe that 9 years ago this time Myeloma was RAGING inside of me, and I didn't know it yet.... My IGA was close to 5800 (normal = 70-400). My M Protein was over 4.3 (normal = 0) and my first Bone Marrow Biopsy showed 70% cancerous myeloma plasma cells! And here I am to talk about it, almost 9 years later, having survived more rounds chemo than I can count, a Stem Cell Transplant, and all the 9 years of side effects I have endured! But I'll reminisce about all of this soon...

Because, since my last post, the Adventures of Julie in Myelomaville continue :))

1- Yes I bit the dust and got sick, but thankfully only a lousy head cold. Seriously, how amazing is that! I go on a Cruise with 2000-3000+ humans, and only get a lousy head cold! Guess those magical Zarxio, Neupogen WBC immune system building injections gave me some back up power to fight off all the potential nasty cooties out to get me! I am very cautious and careful though, and incessantly wash and sanitize my hands, myself, those around me, my living space, etc. I tried very hard to not let anyone touch me, hug me, and I never shake hands, I use antibacterial wipes to touch most anything public, and I brought my Mint Isopropyl Alcohol spray to sanitize and spray anything and everything and everyone! My finger nails even turned a lovely light green from the the Wintergreen color LOL. Wow, I sound like a freak... but it worked... I did not get any deadly viruses, bacterial yuckies or pneumonia, etc...

2- Next I agreed to begin the Vintage chemo Cytoxan with my Velcade and Dex steroids... only I am going to Cheat... ssshhhh don't tell my Dr yet, but no way am I downing 8 frikn Cytoxan pills at one time! I asked her for a lower dose, and she was kind enough to lower the standard of 10 Cytoxan pills to 8, but after I picked up the Rx, and saw them, and began to visualize ingesting all of them at once!... I'm Helllllllooooo, Noooooo, I'm not going to put all those in me at once, risking a nasty GI backlash! I know, I know, I'm a Cancer Patient with Incurable High Risk Myeloma, and I should be on board for high dose- kill off those super strong myeloma cells trying to kill me!! Well, yes, but No! At this point in my life, and treatment.... Quality of Life, and lessening the chance of feeling gross and sick, is my main priority! Yes my myeloma is 4 Times the High End of Normal right now... but sorry, I just can't stand the idea of getting grossly GI sick. See way baaaaaack in June 2010 I had "that reaction" to IV Cytoxan, and uuggghhhh, nope, no thank you... not again, if possible. So Tomorrow Night, Oct 29, after taking 40mg Dex steroids in the morning, my weekly Velcade shot in the afternoon, I will very tentatively, unbravely take 4, yes four of the 8 Cytoxan pills!

Hello pretty blue Cytoxan pills!
Blue just like my lil blue Bug...
Would you take 8 or 10 of these at a time?

I'm also armed with Zofran, but I don't think I'll "pregrame" with that just yet, as I'll be on the high dose, 40mg Dex steroids, and that should help with any nausea, right?? Suggestions please!!!, if you've done this combo, which most of the Myeloma patients have, early on! Why didn't I?? I was concerned about all the warnings from myeloma patients about BAD Neuropathy from Velcade, so I skipped over to Kyprolis, and never had the Cytoxan pills added in, as Kyprolis Dex worked for me for about 10 months, then Darzalex, Pomalyst, Dex worked for me for about 18 months, so here I am, going backwards to meds I skipped, before I'll do clinical trials, CAR T, etc. Yes, no matter how "bad" my situation becomes, Quality of Life is first and foremost to me... since what's the point of treating myeloma, if I'm so sick all the time, I'm not living. Isn't the point of treatment to give a cancer patient their life back??? I've been doing this for almost 9 years now, and for so many hours, days, weeks, months, etc, my life has been so limited by side effects, I learned that for me, the treatment has to make sense... kill the cancer cells, but let me see the sunshine too!

So after the cruise, and getting sick, the pressure was on to get well fast, as I had the honor of being selected as Opening Ceremony Speaker for the Doggie version of the American Cancer Society's Relay For Life. Yes, "Bark For Life" is a similar theme as Relay For Life, but the focus is Dogs as our companions, our "support animals", and how they help us emotionally and psychologically. Here's the event in pictures, and I will be back to narrate the details later, as so much has happened, I'm so exhausted :)) I've done this event for many years, but this year was super special, since they asked me to be Opening "Barker", Speaker, and my Team- Mutts For Myeloma, was the Grand Marshalls, leading the doggie walk! So fun, so cute, and such a happy, positive event! Go Team Mutts for Myeloma! 

I made these hand held signs for our Team members to carry

My Story
So much fun!

How adorable is this!
Special parking privileges!

There I am speaking
Sharing my Crazy Myeloma story

And we're off!
Mutts For Myeloma
Leading the Pack

Go Team Mutts For Myeloma!

How I did all this... I don't know
But 1 lil 4mg Dex steroid pill did help!

So sad
My hubby Jim is having such mobility issues
Best Son Ever Scott, pushing Jim for the Walk

Best pals ever!
Susan and our Hanna
Me and our crazy puppy Jack
And Daughter Alissa with her Nala

Super friend of Alissa
Kristy, and her adorable kiddies

Alissa and Susan
Jack, Nala, Hanna

David and Debbie with doggie Abby
So happy you could come!

Alissa
Jack, Nala, Hanna

Susan and Hanna

Scott's GF Ashley
with her adorable Pugs
Knuckles and Porschia

The Crazy Pack

Go Doggies enriching our lives!

Kathy's sweet Portia and Alissa's Hanna

Portia and Porschia!

Seriously!
How Lucky Am I!
This Is Why Quality of Life is so very important to me! I could not have done this event if I was feeling GI sick from chemo side effects. Been there, done that for so many years on Revlimid with "volcanic diarrhea". It was challenging enough with this event so early in the morning, as I never feel well in the early mornings! And I'm still challenged with all the bone, nerve, leg, muscle, etc pain from the myeloma tumors, plasmacytomas, lytic lesions, holes, etc, whatever the heck they are... so I took one 4mg Dex steroid late Friday night, so I would feel less pain, and also have the energy to get up early, function and be able to give my speech about my life, myeloma, and the importance of doggies, pets, animals in my life. It was a challenge to get me, my disabled hubby, and the 3 doggies all at the park by 8am! Thankfully my amazing family, and Team Mutts For Myeloma were there to help when we arrived. And did you see the pic of my reserved parking space? So Adorable! 

But later on that evening, I decided to do as my Drs and Nurses always say:.... "Go To ER! or Urgent Care! if you have Pain, Fever, etc... So I went, as the pain in my lower back, hips, pelvic area is erratically painful, with different type of pains all the time. So I thought it best to get an updated xray, as I've had a few crazy "slip, trip, ALMOST falls. Ever since my July fractured RIB, I've realized 9 years of crazy Ouchies, may have been other fractures, sprains, bruises, bone involved issues, that I ignored. So I went, was seen by a wonderful, thorough Dr, and the good news is... no new fractures, just all my myeloma plasmacytoma tumors, lytic lesions, etc affecting my nerves, muscles, etc.... Hmmmm ya think I should do the Radiation??? I think I should, as better to be ProActive, than ReActive, right!! And when that pain comes.... OMG... it's truly unbearable... especially since it's at night, when I've stopped moving around... Crazy stuff!

And I'm still laughing about the amount of Meds I'm needing to take to keep me ALIVE! Here's to Velcade, new Cytoxan, Dex steroids, Mepron/Atovaquone, Acyclovir... just to name a few LOL

Welcome to my life :))
40mg Dexamethasone steroids- 10 pills
400mg Cytoxan chemo- 8 pills
200mg Acyclovir- 1 pill
and other Vitamins, pain meds, Thyroid daily pill....

Hello weekly Velcade shots

1x or 2x per day...

Thank you for checking in, and caring about my myeloma story! Hoping you are doing well, and have figured out how to bring your blend of Quality of Life into your Life. It's different for all of us, and I just want to be able to feel less pain, less side effects, and be able to do a few social-family events here and there. LOL---- this October was of course and exception... I usually don't have all these activities at a time... well maybe I do... thinking back to some of my posts :))

Be well, stay well, and find that which gives you joy and purpose!




My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.