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!

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...

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

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??..