Myeloma Myeloma Myeloma ~ Links Links Links

Hello loyal readers-

Perhaps you're weary of my philosophical musings of my ongoing suffering? (Me too LoL!) I noticed there weren't any comments on my previous post. Must have been the "Fungus" analogy :) I read a lot of blogs and don't always leave comments, so not to worry! Please know that I really appreciate all the visits from all over the world. I'm fascinated, amazed and appreciative when I view my blog Stats and see the visits from around the globe, and see who's reading my posts from where. Thank you for caring about my life, my situation, my status, my posts and my myeloma musings!

I do love when you leave me a note, letting me know you've stopped by to read about my life, as I care very much about you and your life and what brought you to my blog. I have readers email me that they have had difficulty posting, or the blog losing/deleting their comment after they click to post. Here's what I do when I respond to blogs: I make sure to copy my text before I click post, so just in case the blog deletes your post, you still have your comment saved in memory. This particular Google based blog requires an identity, so log in however you'd like, write your thoughts to me, copy your text, and click post. If it doesn't post first time round, you have your text saved to post again, now that you are signed in. Just a thought, in case you've had my blog delete your comment, after you've posted. I really do want to hear from you, hear your story and know where you are from!

If you're reading my blog you either know me personally and know this is the best way to know my status (physically and mentally) or you've stumbled upon it looking up info related to Multiple Myeloma. That's how I originally found all the wonderful blogs out there. I Googled in Myeloma, and boom! found a tremendous wealth of information related to everything myeloma! I continue to read and read and read about everything myeloma, as information about this cancer that invaded my life never ceases to fascinate me. So here are some great links I've found, that will help you interpret your blood tests, give you more detail about myeloma and some other general links I read often, such as the MMRF, IMF, Myeloma Beacon, Myeloma Crowd, etc. I also have quite a few blog links to the right of my blog, as well as at the very bottom of the blog page. So much information out there now! 

This is a great site that explains all the details of (all types) of lab work:  

https://labtestsonline.org/understanding/analytes/differential/

https://labtestsonline.org/understanding/analytes/wbc/

https://labtestsonline.org/understanding/analytes/immunoglobulins/tab/glance/

https://labtestsonline.org/understanding/analytes/electrophoresis

https://labtestsonline.org/understanding/analytes/free-light/

https://labtestsonline.org/understanding/analytes/beta-microglob/

https://labtestsonline.org/understanding/conditions/mult-myeloma

Myeloma drugs and medications, news, support groups, etc:

http://www.themmrf.org/multiple-myeloma-knowledge-center/myeloma-drugs-guide/

http://www.themmrf.org/multiple-myeloma/multiple-myeloma-treatment-options/

http://www.myelomacrowd.org/ 

https://myeloma.org/Main.action

http://www.myelomabeacon.com/news/2015/11/22/ninlaro-ixazomib-fda-approval-multiple-myeloma/

http://www.myelomabeacon.com/news/2015/11/17/darzalex-daratumumab-fda-approval-multiple-myeloma/

http://www.kyprolis.com/what-is-kyprolis/

http://www.revlimid.com/

Depending upon your life perspective, this TV article may comfort or offend you. Personally, when my life is done, and myeloma has COMPLETELY taken over my body and I have absolutely NO hope of survival, I personally do not want to needlessly suffer and just be a "live corpse". The idea of having NO control over my life, my body, my functions and being in excruciating pain, scares me. Perhaps I am more comfortable with death and passing-on than many, as I've had to make this decision more times than I can count for all our animals, who's life was essentially over, but their body would not yet let them go. It's just so awful and tragic to watch needless end of life suffering. I have experienced horrendous Colic situations with our horses, Cancer with our dogs, disabling Strokes with our dogs and cats, etc. When one is suffering and there is absolutely NO hope of recovery, and that life is suffering needlessly, it is time to let go and say good bye peacefully. Just my personal opinion, which of course may change when I get to that point. 

Here are a few links related to a person's right to make a MEDICAL end of life choice:

http://www.cbsnews.com/news/60-minutes-aid-in-dying-lapook/  

http://thebrittanyfund.org/

http://www.compassionandchoices.org/

Today was my 6th Kyprolis infusion for the month. I think my veins are beginning to protest this treatment, and I fear the possibility of having to accept a Port or Picc. Why fear this? Check my 2010 Stem Cell Transplant complication, when my Hickman Catheter became septic and the sepsis nearly did me in... I just hate being sick, and try to be so very cautious, and having a Port or Picc invites cooties and germs to invade more easily. Yes having a needle stick several times each week has it's dangers too, but at least it's removed after each chemo infusion, and I can wash and wash and wash freely (especially considering my animal care-taking life style :)

Monday brought 2 needle sticks, trying to find a happy healthy vein. Tuesday brought 3 needle sticks. I appreciate all that the chemo nurses do to make the infusions painless, and I know they feel very bad when our veins aren't cooperating. My February Flu "Fungus" really affected me, and my body hasn't normalized quite yet. I'm trying to eat well and hydrate hydrate hydrate. But it's all such an effort for me. 

Such a lovely picture of me :( I have a bruise like this on both hands. My hands make me look so old and ancient. Myeloma has taken such a toll on me. But forward I march, one day at time, one infusion at a time, grateful for all the expert medical care I receive to keep myeloma suppressed. 

So thankful that I can tolerate Kyprolis 

as it is effectively attacking and targeting myeloma for me.

I've heard there are many patients that are not able to tolerate Kyprolis

for a variety of strong side effect issues

I think my good ol friend Dexamethasone is back to 

beating up myeloma too! I'll have my new stats after

my March 28th appointment. 

We've had heat then rain, then heat and rain. Just love the intense colors after the earth is refreshed after rain. I am very fortunate to feel well enough a few days a week, to be able to get outside and enjoy nature's beauty! 

When I feel up to it, I juice these fabulous tangerines. Delish! 

We're hoping when Mr Tortoise comes out of hibernation

he'll like this natural "salad" nature has suddenly grown in our garden! 

Thank you for reading and caring and being interested in my Myeloma story! 

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

Cancer is My Fungus

Hello March ~

Good news: we are finally better from the awful February "Fever Flu"!

Bad news: my recent labs revealed a disturbing trend.
Bad news: my new betta fish has a fungus and so do I
Good news: I'll tell you my story...

This analogy hit me the other day: Cancer is a Fungus! Myeloma is my fungus!
It hit me while watching my fungus infected betta shimmy around his bowl, fungus in tow, eyeing me, blowing bubbles and just seeming to "happily" study me. He has a fin fungus. Since the beginning of February, I've been treating him for a "cottony fungus" that he acquired prior to me "adopting" him. If you're an animal person, and have seen the display of poor little bettas in pet stores, then you know the unhealthy conditions in which they are kept. They are fed too much food at a time, their water becomes putrid, and sadly not changed often enough in the store. As a result, most bettas wind up with some sort of bacterial infection, fungus, etc. They are very hearty adaptable fish, but their little bodies eventually get sick from the unhealthy conditions in which they are kept. (Yep me! Unhealthy life conditions lol!) You can see the little bit of cottony fungus attached to his fin:

So the analogy of cancer being like a fungus growing inside of me hit me like a lightening bolt. Mr betta fish's fungus is visible, mine is not. Myeloma is my "invisible" fungus! Permeating my entire being. Winding it's way through all of me. Trying to take over all of me. Creeping through my being. Suffocating, killing my healthy cells. Cancer has infiltrated my being, my core, my organs, my entire physiology. It can't be seen to the naked eye, but it's there growing, spreading, attaching to my everything. Stupid insidious cancer! Myeloma as a fungus hit me! Why things suddenly impact me in the way they do, when they do, I don't know why, but this analogy really hit me: CANCER is a FUNGUS like this stuff growing on my betta fish. I can just visualize it's poisonous tentacles slithering around my cells, taking over, smothering, attacking the healthy cells. Myeloma is my internal fungus.

Additionally, since I've had such a difficult time feeling well after this crazy lingering Forever Fever Flu that took over my life in February, the fungus analogy seemed to apply to that too. Both the flu and cancer: creeping, suffocating, slithering germs, invading my entire being. Lingering and seemingly stuck within my being, never leaving. Never ever leaving...

Then that concept hit me. Again, why now? I don't know, but it hit me... I'll NEVER be well, ever again. I will always be "sick". Always cancer-sick or chemo-sick or sick-sick. I've been fighting cancer for 6 or 7 or 8 years now. 6+ years known, and who knows how many years prior to diagnosis unknown. It hits me fully, I will be fighting the-trying-to-be-well-feel-well-battle forever now! FOREVER! Why? Because I have an incurable cancerous fungus continually growing inside of me. Cancer is my forever fungus! I will never be free of it.This is my reality. "Forever" really hit me. Forever and ever, unwell..

So at the beginning of January 2016 my local oncologist suggested I begin weaning myself off Dexamethasone steroids. I had been on 20mg per week since October 2013 with Revlimid. When I switched from Revlimid to Kyprolis in November 2015, we paired 10mg + 10mg Dex with my Monday, Tuesday Kyprolis infusions. Was working really well (see my Dec 15, 2015 post), but she was worried the impact of me being on steroids for over 2 years. So we began reducing the level during January and February, and eventually reduced to NO Dex, just Kyprolis.

Well.... at my SCT appointment on Feb 15 (the day I was getting sick and didn't immediately realize it), my IgA showed an increase from the last labs. Not a lot, but noticeable. My SCT hematologist was not overly alarmed, but was a little concerned about me being weaned completely from Dex steroids. He agreed with the reasoning, but said that if my M-Protein changes, then he would recommend going back on the Dex steroids.

Whether me being sick, or missing 2 Krypolis infusions from being so sick in February, or being off Dex steroids, the results are in, and sadly my M Protein has come roaring back. My oncologist called me on Friday to let me know I should start the Dex steroids again. I'm really not surprised at all. Looking back on my stats from 2010, Dex steroids really helped bring my myeloma levels down. Same for 2013 on. When I was diligent about taking the 20mg per week, my IgA and M Protein was lower. So lesson learned. My IgA type of myeloma particularly hates Dex steroids. So here we go again. Roid rage fun and then awful crash. Every week now. Hello bi-polar, fake propped up life.

Here's my stats for perspective:
Immunoglobulins (I'm IgA myeloma):
Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230

Date                      IgA        IgG         IgM

10/18/15              1890       240         < 18

11/18/15              1440       233         < 18

12/2/15                862         230         < 18

12/30/15              482         262         < 18

1/18/16                426         228         < 18

1/27/16                432         221         < 18

2/10/16                551         227         < 18

2/28/16                635         226         < 18

M Protein (Normal = 0)
July = 1.26
Aug = 1.01
Sep = 1.37
Oct =  1.58
Nov = 1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time

MMRF

Ok, here we go again! Back to Dex Steroids with Kyprolis. To be honest, I missed the "artificial" prop up I would get from Dex. I've just felt so lethargic, fatigued and tired. I just don't have any "pep in my step" any more. Actually haven't for a long time, it was just hidden by the weekly steroid boost. And the fatigue. Ugh the fatigue. Feeling so exhausted and depleted all the time. Sure, I hated the evil "crash", but with how physically depleted and fatigued I have felt from everything, it's going to be a nice little "vacation" to feel some energy for 2 days a week. Unfortunately my Dex days won't be "play" days or work days, as they'll be Kyprolis infusion days. But at least I'll have more energy to smile and feel hope again.

 My "circle of life" infusion

So forward I march (lol it is March). Monday, Tuesday. Monday, Tuesday. Monday, Tuesday. Still trying to process and absorb my crazy situation. Sorry if I am always so redundant about this topic, and it seems to be an ongoing blog theme here, but I don't think I will ever fully absorb my cancerous circumstance. Have you accepted, processed, absorbed your life "circumstance" or "challenges", whatever they may be?

In other news, my life is still as comical as ever with all our animals. I laugh at my responsibilities, given my medical situation, but I know all these lives depending upon us, give me purpose. I laugh at all the potential contamination I am around with all the animals, but my poor dry overly washed hands are evidence of how careful I am. Everyday when I care for our 19 year old cat in diapers, I think... if he could talk, would this be what he would want? Yet, his sweet purring reaffirms his happiness with all the attention. But it's another analogy in my life: I hope his senior life circumstance is not mine one day... diapers... no thank you!

And finally, with how lousy I've felt for so long, I watch more TV now then I ever did in my pre-cancer life. Today, on Nat Geo Wild, the theme was "Adapt or Die".. that concept struck me too. I'm trying hard to "adapt". I really am. I remind myself... "The Only Constant is Change". Push forward always, just like the thousands of baby sea turtles born on land, programmed with amazing natural radar, to get to the sea. Push forward. Don't stop. Keep going. Danger is always lurking. Push forward. Accept. Go. Do it! Just get there!

Awareness, Process, Accept, Adapt. Forward March to chemo Julie.


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