Latest Biopsy Results

Rasta “Papa” with Mad Scientist Madison on Halloween
Results from latest bone marrow biopsy show no detectable cancers.  So, I’m Minimum Residual Disease Negative (MRD-).  This means that not one in 10,000 cells shows any sign of disease.   An excellent outcome.   Furthermore, as I mentioned earlier, the cells were sent for a deeper analysis to another lab that reports < 1 out of 1,000,000 cells are cancerous.  These results were shared with me during my regular visit with my nurse practitioner who is unable to interpret them…specifically if <1 is equivalent to 0.  My doctor is on vacation, so we’ll have to wait till he gets back for the definitive word.  But it is certainly very encouraging.  I’m guessing that it will be measured again in a few months and if it gets to 2 or more, that would require some sort of intervention.  But that is just me guessing.  I’ll see what the doc says when he gets back. Perhaps it is reflective that I’m on the road to cure.  Fingers crossed.
I’m feeling quite good these days and getting back to my old self.  I’ve been going to the gym regularly and lifting light weights.  Riding a bike on flat ground.  Hitting tennis balls with an instructor, although I don’t quite have the stamina yet to play a match.  I’ve resumed my role with UCLA on an institutional review board, where I sit on a committee to review the ethical and safety aspects of clinical trials in oncology.  I’m not experiencing any major symptoms or side effects.  I’ve finally resolved a stubborn cold I caught several months ago.  I do need to be extra careful in public gatherings as I’m rather susceptible to catching a cold or the flu when flu season gets into full swing.  Getting on an airplane is still not a good idea, so we are limiting ourselves to local trips for the time being.   For example, Susan and I drove up to Mammoth (about 5 hours by car) to see some fall leaves last month.  For the most part, my days are filled up with daily exercise, reading clinical trials, watching impeachment hearings, and of course, watching Wisconsin football and basketball.  I also spend time with my granddaughter, Madison.  Hillary has a late class on Tuesday nights, so we have a weekly pajama party with her.  She is equal parts fun and exhausting, but we love every second of having her around. 
My hair is growing back (don’t take the above photo as an indication!).  It’s wavier than my before but the color is about the same.  Actually, fewer flecks of gray than before.  I’m still pretty scrawny, about 25 pounds lighter than before this all started.   I’m wearing 31-inch waist jeans.  But I find it to be a comfortable weight and hope to stay right around here.   People I run into, like the checker at the grocery store and friends from the gym, all say I look a lot healthier.  Man, I must have looked pretty awful before!
People often ask me how I managed to get through all this.  The only wisdom that comes to mind is to never assume the worst possible outcome.  I’m not saying to ignore it.  But just don’t assume it. Like when you hear all the possible side effects of a medication advertised on TV, don’t assume that you’ll get them.  Gad…they sound like a Stephen King novel!  You COULD get them, but don’t assume it.  I was told a whole lot of scary things could happen to me.  And I was even given odds that such as 1 in 3 people have such negative results.  I just couldn’t bring myself to assume that I would.  It’s like living in California.  You can’t be blind to the risk of an earthquake.  You should definitely prepare for it.  But I refuse to assume the worst possible outcome. I don’t expect we will fall into the Pacific Ocean if it happens or my house will fall on top of my head.  It will probably suck for a while, but we’ll be OK.  That’s how my cancer fight has been so far.    And if the worst possible outcome SHOULD happen, at least I won’t have wasted time worrying about it.

Happy Thanksgiving!!!!
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Frugal Friday

I’m not too sure anything these days is all that frugal. We still have medical bills coming in that the Cobra insurance(UHC) says we owe due to the fact B was medicare ELIGIBLE but was in fact not on Medicare. WTF! At least it was for only the one month as far as I can determine. But we could appeal but I doubt that we would win it. So payments on that for a while.  So NOT frugal. Or maybe it will keep us more frugal as that money cant be spent elsewhere.  No, I think it would go straight to savings.

I’ve got most everything for Thanksgiving but realized I still need the nut loaf ingredients. I have the brown rice but the binder is cottage cheese and I need mushrooms too. But I can get those next week at our local Holiday Market.

The dental surgery co-pay was $196 so that was worth having the Cobra for as it would have been @ $1500 so that’s good. I seemed to have a reaction thought to something as I started sneezing and my sinuses went berserk. But the oral surgeon seemed to think it was a cold even though I told him I had no cold. Anyway, it’s better today.

Still, no tree guys so that money is ‘hanging’ out in our checking so that’s a savings ( sorta).

I’m not going to the gym as I’m going to Walmart for a pickup and then to the bank to get a notarization. B sold his motorcycle to someone in Nevada and it was signed wrong so I need to sign a paper that says I signed it wrong .P.I.T.A.  Plus I’m still not feeling 100%. He did lose quite a bit by selling the Honda as he bought it new. But that’s the way it goes.

Dinner is pizza and I’m going to try Whole Foods refrigerator dough to compare to T.J’s. I’ll report back.

 

I

 

Curcumin and myeloma: a new patient study

A very small Indonesian study came up with some interesting conclusions about curcumin given to myeloma patients who were also taking melphalan and prednisone (MP): http://bit.ly/348vHwY

The study evaluated two groups of myeloma patients, a control group of 16 patients who took only the MP, and a treatment group consisting of 17 people who also took 8 grams of curcumin in addition to the MP.

After 28 days, as we can read in the study, “There was a significant decrease of NF-KB, VEGF, TNF-?, LDH levels in the treatment group compared with control. There was a decreasing trend of IL-6 levels in the treatment group significantly.”

Now, true, this was a very small study, and it lasted only for 28 days, but it just adds to the anecdotal evidence that curcumin can reaaaaaaaaaally help, even when one has to take conventional myeloma drugs.

So, for the umpteenth time, I ask: when are we going to start testing curcumin, alone or in combination with conventional MM drugs, on a larger scale?

(My guess: NEVER. Simply put, curcumin won’t make a profit for the pharmaceutical companies that hold us all hostage…).

Still, let’s end on a positive note: very good news from Indonesia!!! 🙂

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Big Birthday Coming Up… Sorry Myeloma, This Time I Won :))

Hello 11.19.19

I generally have my blog posts written in my head, ready to post on the 9’s, but of course all our darn issues and medical complications here, always seem to sabotage my best writing intentions. I often send drafts to myself at the most unusual times, as I seem to have some of my most inspirational writing moments when I’m in the Horse Arena Picking Up Poop!!! ahaha :))  Or very late at night when brushing my teeth. Have you ever looked at the patterns of your toothpaste splatter in the sink as you brush your teeth? I see “messages” there all the time…

Sometimes, I think I should just post my raw, unedited thoughts, then I realize I am writing to World, and need to be careful what I put out there… but I love Authenticity and Spontaneity. I love to just write from the moment, from the gut, from the heart. Just letting it all spill out from what’s circulating in my damaged brain.

So I think I will this time… but after this little “announcement”…

Today is “gradual” crash day from yesterday’s “Monday Medication Madness Day”, so I’m starting to feel kinda yucky… Yes still weekly treatments of 40mg Dex Steroids, 1 Velcade shot in the belly jelly, 8 Cytoxan Cyclophosphamide capsules at 400mg. I keep posting about this, as I’m always so INCREDULOUS how my body tolerates all this stuff injected in to me, ingested, digested in my tummy. And that I do this every single week, no breaks, no time off, every single frkin week. I think it’s all so amazing I’m still here, and coming up on my 10 year Myeloma diagnosis Anniversary next month!!!

And speaking of Anniversaries and Birthdays… drum roll please… :))
This Friday, Nov 22 is my Big 6-0 Birthday! Yep, diagnosed at 50 and here I am, 10 years later, turning 60, against all the odds and “predictions”!! Never, ever thought that I would see 60. Many would “hide” this number from the world, but I’m super duper proud I am still here and able to do and be me still. 60 years on this earth! Incredible. Sounds so OLD, but I sure don’t feel OLD on “good days”, and sure don’t feel like the stereotype of what 60 sounds like, or I used to associate with 60. Whoohoo, I’m OLD!! I’m a “senior citizen” ahaha… sure don’t feel like it mentally! And on Dex steroid days, I don’t feel like it either!

Be right back… with my raw and honest post from the horse poop… :)))
===============

Hoping to not offend any of you battling other cancers, or all the other awful life “illnesses” and challenges out there everyone is dealing with, but honestly, there’s just something different about battling the Life Long “death sentence” of Myeloma. From day one of diagnosis, I was told THERE IS NO CURE FOR MYELOMA, BUT IT IS TREATABLE… ya ya I thought then, no BIG DEAL. Treat and Get on with life, I thought at the time. I really wasn’t that scared or worried. Just take some meds, do the stem cell transplant, and get on with life, get back to work, get back to life, get back hobbies, etc… ya ya, Terminal, ha, it’s Treatable, they said….
WHAT I REALLY DIDN’T AND COULDN’T PROCESS AT THAT TIME, WAS THE REALITY OF LIFE LONG TREATMENT IF I WANT TO STAY ALIVE…
What I really couldn’t and didn’t process was what it would be like to treat an Incurable Cancer FOR LIFE!
What I really couldn’t process then was the Continual Cycle of Treatment and Side Effects… Every Single Day, Every Single Week, forever and ever and ever and ever, if I want to stay alive.
Can you even grasp the concept of doing chemo EVERY SINGLE WEEK, AND BEING SICK EVERY SINGLE WEEK, NO BREAKS, NO TIME OFF.
Can you even grasp the thought of ANTICIPATING doing chemo every single week, and anticipating and dealing with yucky side effects Every Single Week. I couldn’t grasp or process it then, and I still wake up shocked every single day. Shocking writing this, as THIS. IS. MY. LIFE. This is my Reality.

I’m invited places all the time. I want to make plans all the time. I want my previous life back all the time. I want to work, play, do, go, be who I used to be, all the time. I want to go back to being “normal”. I want to say Yes, to going places, doing things, playing, working, doing projects, having the energy and normalcy to do… but I just can’t. The fatigue from myeloma and treatments and side effects is disabling. I feel more and more nauseated as I write this, as Monday’s chemo side effects are hitting more and more each minute. I don’t know if I’m hungry or nauseated. If my head hurts from thinking, or from the medications. I’m thirsty, but I don’t want to swallow or drink anything, but I know I must. Everything is yucky today and tomorrow and the next day. Imagine a life of forcing most anything and everything. Of doing everything and anything because you HAVE TO, not because you want to, like BEFORE MYELOMA… My Halloween decorations are still sitting out, needing to be put away before Thanksgiving and Hanukkah and Christmas, and New Years comes. There are storage boxes to go through, years and years of stuff to go through… but myeloma always sabotages….

Everyone says get out there and do things. Live your life. Be happy. Go places. Ha! Ya right. And have near misses with GI issues. Force going places when you feel sick and dizzy and achy. People just can’t grasp that I look as good as I do, but I feel so yucky. My personality is to “grin and bear it”. “Fake it til you make it”. And I’m a natural communicator. So I force energize myself and my conversations, when I really don’t have much helium at all. But then there are days… when I just can’t. And that will be tomorrow, Wednesday, my worst day… But I still have to pull myself together to be “boss lady” here, as I’m still in charge…

They say don’t make cancer your life, or your identity… Oh really? 
With treatment every frikn week. 
Side effects every every frikn week, how can cancer NOT be my life?!
Live your life they say
Be happy they say
Get out and do things they say
Be happy they say
Yes to all of those, but how, when you feel so awful?
How “happy” would you be with a Terminal Cancer Death Sentence?
How “happy” would you be with a husband with Terminal Alzheimer’s who used to do EVERYTHING and was MY CAREGIVER!
They say, get on with your life, don’t make cancer your life, don’t let cancer control you. 
Really how is that possible when treating terminal cancer IS MY LIFE, every day, every week, forever and ever to my infinity.
Really, how can I not make cancer my life, when cancer crept in my life and made my life all about cancer, and illness, treatments, and sadness, and overwhelming challenges every day… This is not a choice. This is not something I opted for, or chose in my life. It’s not a decision I made. It’s a decision that my body made for me. Yes how I respond psychologically to all of this is a choice, but what happens to me physically, I have little control over… 


Everyone says just be happy. Well I am very happy some days. I do feel ok some days. But my REALITY IS I AM A CANCER PATIENT FOR LIFE. NO OPTIONS IF I WANT TO STAY ALIVE. I must do chemo every week to stay alive. I must suffer with side effects if I want to stay alive. Cancer is my life, as Cancer invaded my life and became my life. It is my reality, and I cannot pretend differently. 
Most other cancers can be treated, and the patient achieves remission, and moves on with life. Myeloma is different. Myeloma is incurable… myeloma is for life. 


So cheers to surviving a decade after diagnosis. This makes me happy and proud! Cheers to being as “well” as I am, after 10 frkn years of treatment and my body trying to kill me. Cheers to turning 60 on November 22! I had plans to celebrate in many different ways, but reality is that can’t, won’t happen because of chemo side effects. This is not a poor me, pity party. It’s my reality. No I am not depressed. No I am not angry. I am just explaining the Reality of my REALITY… 



So I pulled myself together the other day, and didn’t eat or drink beforehand, and managed to get me, Jim, caregiver Chris and 3 of our little doggies to the super fun annual Bark For Life event. This is the doggie version of the American Cancer Society’s Relay For Life. Here’s a few pictures of my “Mutts For Myeloma” Team. So much fun! Also, my Myeloma blog buddy Matt came out to the event so we could finally meet up! It was so wonderful to finally meet in person! Thank you for making the drive Matt! Pretty amazing all the incredible people I’ve met through this blog, despite awful myeloma being the catalyst for us meeting.


Go Team Mutts For Myeloma!

Aren’t we all cute!
Look at all the cute doggies!!!

He’s an 8 year survivor!

Me and my daughter Alissa and our darling “littles”

I’m pretty worn out here 
But “fake it til you make it” right!



Thank you for reading and checking in, and caring about my life and story as you do. Hope all is good in your life, and if you’re a myeloma patient or cancer patient, I hope your treatment road is as tolerable as possible. 


I’ll be back to edit this again, and again and again. 







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November hasn’t been a kind month

It will be a year tomorrow that Barclay was getting a blood test and was told to go to the ER immediately. He had almost 0 platelets, and extremely low RBC, WBC, and hemoglobins. Seriously bad.  I knew it was something bad and that this wasn’t just a blip.

 

He got in to see the local oncologist pretty quickly( like that same week). MDS was a possibility or aplastic anemia.  After getting more transfusions he got a BMB but the BMB wasn’t done right and the sample was inadequate.  This was when we were still with Sutter.  So eventually it was done correctly and the diagnosis was MDS high risk.

He then was transfusion-dependent and without a transplant would last maybe a year.

The rest is history.

Today was almost that year mark and another BMB.

Now my turn. It was right before Thanksgiving in 2003 when I had the fracture in my T-10.  Of course, I didn’t know that then or even that it was Multiple Myeloma. the NP I saw said a strained back. No Xray ( which would have at least seen something). I lived with that for 18 months till the spring of 2005 when I saw a doctor about some back surgery since my back still hadn’t really ever gotten 100% better.  Then I had an MRI. There was a plasmacytoma. The rest is history.

So November brings up some difficult emotions.

Transversing blood cancers is difficult. I’ve been fortunate that my Myeloma has responded when I’m in treatment.  I’m grateful I’m not starting treatment this month but hopefully can get to spring before I start.  B’s MDS is tricky and I hope he has a long if not permanent remission.

There’s always the questions” Why Us?” But I don’t bother with that anymore. Nor do I do prayers or the ‘God’ thing’.  Life is what it is and I believe we must live presently and with good intentions. There are no second-guessing these things.  I believe we must js\ust put one foot in front of the other and

remember what Bilbo Baggins says” It’s dangerous business going out your front door”.

Simple Sunday

Another week ahead with 2 appointments.B has his BMB ( 6 months) on Monday to check how everything is. I’m pretty sure it’ll be good as nothing unusual has shown on any blood tests. Then Tuesday he has weekly labs. He’s driving himself to those. Then Wednesday I have my dental surgery to remove the root of the broken took. I’ll have propofol to be sedated.  I’m hoping the gap heals for Thanksgiving. I’m not doing an implant but may consider a bridge for that area.  I would consider not doing anything but there is the risk of an infection and that wouldn’t be good.

I guess we’ll be eating soup this week.

Still no rain in our forecast. By this time we usually have had several storms with rain. Everything is quite dry.

I’m in the bedroom zone this week. I did the windows and tidied the closet. I was going to declutter a vintage suitcase I have in a corner and discovered it had mold on the bottom. So I had to take it out and remove everything. I decluttered about 25% but some of the items are baby things and want to hold on to them a while longer. Not clothes, they are long gone but wooded toys and some Peter Rabbit plates( Beatrix Potter). So now I need to buy a bin for that stuff. Unless I can get them in the under the bed bin which I will try first.

Then after seeing that, I ‘ve decided to pull up the antique wool Karastan rug I have and donate that to Cancer Thrift.  I’ve had this rug since 1977 and bought it at the Salvation Army for $500. It’s a lovely rug in pastels but I think it’s time if it’s holding moisture on the floor causing mold. Our bedroom floor is cold in the winter partly due to there is no insulation under the house.  We had to remove all that when we had the rodent infestation about 3 years ago. So, I think, it’s time to do something else. My daughter’s tiny room has vinyl flooring from Home Depot and it’s really nice so I think that’s what we’ll do in there.

Our floors are wood(fir) but not in great shape so I don’t feel bad about covering them up. Plus it does make cleaning easier.

Today is a gym day( I think). Now with the rug fiasco, I may just stay home and deal with that.

 

 

A minimal Thanksgiving

552cdb22-105b-4107-869e-4ec1dff8e550.jpgEvery year I think “oh, I’m going to go out for Chinese food, or order a pizza for Thanksgiving”.

But then I realize, I like to cook for Thanksgiving although each passing year I streamline it more. One, because too many side dishes are well, too many.  But, since we don’t have family that comes or anyone we know really, it’s a fairly low key event.

This year I will do our vegetarian nut loaf, which I’ve made every year for the last 20, plus either a small turkey or turkey breast, plus mashed potatoes, a vegetarian tamari gravy, and a few other sides. That’s about it. I always buy a pie but no one eats it till maybe the next day as we’re not dessert eaters at all.  I’m not really a baker so I usually buy a pie at Costco but this year maybe I’ll think of something else.

Since it’s only the 4 of us, I just don’t want to overdo it.

I have a few pumpkins for the table and the knitted pumpkins as well and I’ll go cut a few branches of the Japanese maple for color.