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

Saturday, June 29, 2019

Happy 9 Year SCT Anniversary Birthday!

Hello 6.29.19

It's almost my 9 year Stem Cell Transplant Anniversary Birthday!
Wow! 9 years, July 5, 2010, and here I am, still around to reminisce about it, and celebrate it July 5, 2019!


This time 9 years ago, I had completed 5 months of Revlimid + SUPER HIGH DOSE Dex Steroids (40mg- 4 days on, 4 days off!), bringing my myeloma cancer level DOWN from 70% to 10%. This allowed me to go forward with the Autologous Stem Cell Transplant process.  Next up was one IV infusion of Cytoxan, which I got super sick from, hence my concern when starting the pill form of Cytoxan back in Sept 2018. Crazy how I am doing so well on Velcade, Cytoxan, Dex now (altho I was up last night until after 3am with "volcanic GI "cleansing").

Then after the IV Cytoxan, I had my Hickman Catheter placed in my chest mid June.
Then about 10 days to 2 weeks of Neupogen to "mobilize" those precious stem cells for harvesting (also known as Apheresis). https://www.cityofhope.org/myeloma . I completed the stem cell harvest in 2 days, collecting about 9.5 million cells, if I remember correctly. Half are still in a deep freeze at COH, waiting for me, if I decide to complete another SCT... hmmmm.... probably not....

https://juliesmyelomamoments.blogspot.com/2010/06/surgery-fogbelated-blog.html

https://juliesmyelomamoments.blogspot.com/2010/06/stem-cell-harvest-week.html

https://juliesmyelomamoments.blogspot.com/2010/06/mega-millions-win.html

Around this time 9 years ago I was feeling pretty good, as my myeloma symptoms had lessened, the cancer was beaten back substantially, and I wasn't on any chemo or immunotherapy or treatment or meds for about a week. I did the most STUPID thing at that time... I had a rash reaction to the bandage covering the open hickman insertion area, where the tubes (lumens) came out of my chest, so I STUPIDLY left it uncovered, thinking "oh gee, the fresh air is good for it"... babajajahhahaaa... so dumb Julie! It was an open wound with the tubes inserted into my chest wall, connected to a main vein! Well I wound up with huge complications in the middle of the SCT process as a result of  a staph infection from that... and that complicated the SCT recovery process.... but that's another story, for another post :))

So this time, 9 years ago, I had a week or so of freeeeeedom from treatment, as my hospital Admission day wasn't until July 2, 2010. Oh I was so optimistic and naive. I just had no idea the train wreck coming my way. Actually, in the BIG picture of things.... I did quite well, compared to horror stories I hear and read from others. Not that my experience was a vacation... more to come on that!

  Here we are, ready to admit me to the 6th floor!
LOL I had no clue...

So July 2, 2010 was Admission and Orientation, get settled in day. July 3 and 4 was High Dose Melphalan chemo. Oh boy... amazing the delayed reaction that has. Most SCT patients think they are doing just fine, as the chemo side effects are many days later... and BOOM, we feel like we've been hit by a train, as our immune system spirals down, crashing to nothing, as the the Melphalan chemo is killing and obliterating everything, bad and good. And that's the whole point of the process. High dose chemo to kill off what's left of the myeloma, and the stem cells essentially bring us back to life... slowly, after the almost deadly affects of Melphalan! 

But I was one of the lucky ones! My SCT was totally successful, and I achieved CR (complete response). It was the septic infection from MY stupidity of not covering the Hickman tubing insertion site in my chest, that almost killed me. I wound up with "Staphylococcus aureus", mid way through the Neutropenic crash. 

That's a super brief summary of my SCT experience, but here are my blog posts from back then, and also my July 5th anniversaries, with all the detailed details!

 


https://juliesmyelomamoments.blogspot.com/2010/07/
All my July 2010 posts, SCT hospitalization

(I was such a different writer back then...) 










Aaaand there are so mannnnnnyyyyyyyyyyyy more posts!!! I can't believe how much I have written over the last 9 years! I never thought I'd be alive this long when I started this blog! What a living book this is, and I thank you deeply for your interest in reading my story and hearing about my life, my unanticipated, insane challenges and my grateful joys. 

July 5th!

Hope you're feeling and doing well if you're one of my myeloma buddies. I love to hear how you are, and what treatments you're on. As I write (and reflect back on) my story, I can't believe it's mine, and I'm sure you feel the same way about your life status too. Wow, 9 years. Never thought all this would be my current story. 70% cancer at diagnosis,.. I really "shouldn't still be here" right!...  and also with all my bone damage, lesions, fractures, plasmacytomas, etc... but my body is currently stronger than myeloma, so here I am, and I'll continue to write my story until I can't! So there myeloma, take that! 

Next up, labs tomorrow for chemo on Monday. 
Then more labs later in the week for my status Dr appt July 8th.
I'll never get over the crazy "new normal" lifestyle of "living for" my lab results and cellular status. Ok, don't get in a tizzy about that... I don't literally LIVE "for" my results, I just excitedly look forward to knowing my detailed health status monthly, and actually weekly too, with my Sunday labs for Monday's chemo. See, this is one of the "perks" of cancer, specifically myeloma. Being able to know what my body is doing on a deep, detailed cellular level, weekly! I like that. I like knowing. Not everyone does. I do. 


Happy summer, happy 4th of July to all my USA readers :))


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Wednesday, June 19, 2019

One Day at a Time... Just Keep Breathing...

6.19.19

Hello to no new dramatic news, although everything is dramatic around here. Sad, tragic, heartbreaking, unbelievable, yet sweet moments of ok...

So much going on psychologically, so much to process, so much to compartmentalize... I just want to SCREAM............ How Did This Happen To My, Our Lives...

But within IT all, I am so very grateful for my treatment success, as I come up on my 9 year Stem Cell Transplant Anniversary in July! Wow! No one would have ever guessed I'd still be here, and as ok as I am... well I'm really not "ok", but I am ok... To look at my chemo treatment plan, and my Pet Scan results, you'd think I'd hardly be functional. Thank you to my body for hangin in there... Crazy how I'm so SICK, yet so "well" on other levels.

Took my hubby to the Dr today, then out to a spontaneous lunch, since I have his wonderful caregiver Chris to help with everything. He is such a gift in our lives! He is saving my life in so many ways.... Caring for an ill adult is unbelievably challenging.... and so very tragic... Cannot believe what I am still able to do, and I how I do what I do each day... Yes, "fake it till you make it" is my life right now... ugh, sorry, my thoughts are all over the place, and I could go super deep, but I won't. I'm hangin on by a tread in so many ways, yet so grateful for so much... so grateful for so much!!









Thank you for checking in, reading and caring as you do...
The drama will only become more dramatic each post...




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Sunday, June 9, 2019

Fighting To Stay Alive One Treatment at a Time

Hello 6.9.19
Hello June!


Hi Friends and Loyal Followers :))

I'll have a medical update for you tomorrow, as I have a phone appt with my Dr in the morning. Some of my labs have come through, and I'll post screenshots of those tomorrow, after I discuss the results with my Dr. SEE BELOW :))

I'm still processing my recent Pet Scan... will ask my Dr more details tomorrow
I did a follow up Xray on my leg bones, and see what she has to say about that

I didn't do the follow up MRI on my Liver, as I am concerned with the Contrast used, Gadolinium. Have any of you had any negative reactions from it? I remember reading something about a specific concern for Myeloma patients, since it's processed thru the Kidneys?? Let me know if you've had a MRI with the Contrast and if you had any Reactions!!!

https://www.itnonline.com/article/debate-over-gadolinium-mri-contrast-toxicity

https://www.verywellhealth.com/safety-of-using-contrast-in-mri-scans-4154264

Or just Google Gadolinium and see what comes up. Kinda scares me. And especially with all the chemicals I am putting in my body weekly, that's a lot of STUFF to process out. Again, I recall something about a warning or caution for Myeloma patients, because of the Kidney issues...

Ok, I'll be back tomorrow, June 10, 2019 with a more detailed update.
Thanks for checking in, reading and caring as you do!

UPDATE! :))

Here's my recent labs and Myeloma status:


IGA holding steady! Just up 50 points

M Protein holding steady too
Just up a few points from last month


Beta 2 down a bit
And for the first time in a long time
ACTUALLY in the NORMAL range!!!
WOW :))

Fighting Myeloma is crazy. Has just taken over my life mentally (aside from my husband's tragic Alzheimers decline). So many say cancer is not them, they "just have cancer". Cancer does not define them. Cancer does not consume their life. Cancer is just a bump in the road. Cancer is just a disease, it is not them. Well, for me, living day to day, week to week, month to month with my cells trying to kill me... well that consumes me, along with weekly treatments and daily side effects. How can this monster not consume my life and thoughts. My body is trying to Kill Me! 

I put "healing poison" in me weekly! The myeloma cells are trying to kill me, and the chemo treatments nearly kill me. How can this not be my life, my thoughts? If I don't treat, I die. Simple as that. I have a very "aggressive" type of Myeloma. I don't even get chemo treatment breaks anymore! How can this not consume my thoughts, my plans, my feelings?

See, Myeloma is so different from so many other cancers and cancer journeys... BECAUSE MYELOMA IS INCURABLE. Yes that's the biggest, hugest, ginormous difference. Myeloma IS NOT curable. I don't get to move on, I can just keep moving forward.

It's a different battle every day. Monday = 10 steroid pills, 1 Velcade shot, 8 Cytoxan pills. The act of taking them, going for treatment, hearing about all my labs, Pet Scan results, then eating so I don't get sick. Trying to hydrate properly. Trying to consume things that taste ok with Metal Mouth. How can cancer not be me? Fighting myeloma has completely changed my life since Dec 2009. This is my reality. Treat, Treat, Treat. Side Effects, Side Effects, Side Effects. Labs every Sunday, for treatment on Monday. How can this not be my life. Then the side effect Crash on Tues, Wed and into Thurs, and sometimes Friday. I basically only have Sat and Sun somewhat ok. And the Fatigue. OMG the ever present FATIGUE... Yep, myeloma owns me. Because Myeloma Is Incurable. Simple as that. It owns me and owns my life, if I want to continue to Fight to Stay Alive. 

But... 
In between Fighting, I do have a little Fun- when side effects let me. 
Attended Kaiser's Cancer Day, and had a wonderful time hangin with my Chemo Lab staff, Outside of the chemo lab!!

My Chemo Lab buddies

My amazing Chemo Lab Pharmacists
Always answering my endless questions

More Chemo Lab buddies

My Amazing Doctor
Saving my life, one prescription
one appointment at a time

My ever loyal personal Nurse

The wonderful Chemo Lab Crew

Couldn't Fight this Fight without all of them! Endless thanks of appreciation and gratefulness!

And lest I forget to mention...
I asked my Dr additional clarification of my May 2019 Pet Scan. There's just so much Anatomy and Physiology to understand. I read and reread the report, but it's just so much to absorb and process. So I asked her about the comments where it showed additional metastasis on the ribs, pelvis, femurs, tibias.  

I have a "soft tissue growth from the anterior aspect of the right third rib". "Expansile lesion measures 3.9 x 3.3 "Highly concerning for worsening of metastatic malignancy". "Overall significant progression of hyper-metabolic widespread osseous lesions, such as significant interval worsening of hyper-metabolic bilateral rib case lesions, including masslike soft tissue thickening arising from right third rib lesion"...   So yes, I have a "soft tissue Mass" on my Right side ribs. Lovely. Thank you myeloma.

Also, "right proximal tibia shaft lesion"... "Left femoral plateau... significantly larger elongated shape within the mid left tibal shaft"... "New hypermetabolic right femoral plateau..."

I also have something "between hepatic lobes"... "within the right hepatic lobe"... "low density lesion of bilateral hepatic lobes"... "There is a curvilinear pattern of mild uptake between hepatic lobes as well as adjacent focal uptake within the right hepatic lobe near porta"... "Limited evaluation of unenhanced CT" ... "for better characterization further evaluation with contrast imaging/MRI may be of value"...   This is what my Dr wants to have me do the MRI with contrast for. Still thinking about that.... ummm.... no, at this time... maybe in a few months... Gadolinium... hmmm.... noooo, not at this time. I don't need any additional DRAMA, thank you Myeloma... 

Whew... that's a lot to take in... and that's only a portion of the report. I think I may have posted a screen shot in another post? Just had to type all this out, it helps me to process it... I still feel like I am reporting in for someone else, not me. I live such a 3rd person life in so many ways... my life is the Twilight Zone. So Out of Body... so much to process and comprehend.. daily, weekly, monthly. One foot in front of the other, one day at time, one challenge at a time, one treatment at a time, downing 10 steroid pills at a time, bracing for belly jelly shots one jab at a time, downing 8 Cytoxan pills at a time... really? can this really be real?  

Oh, did I mention... maybe more Radiation... or Metal Rods and screws. Bionic metal lady, here I come. Noooooo... not any time soon, thank you Myeloma. 

But serious THANK YOUS to my AMAZING MEDICAL TEAM, saving my life one treatment at a time, one scan at a time, one visit at a time. I seriously wouldn't be here without my incredible medical insurance... yes, that I pay for, worked for all my life. So grateful. Thank you everyone saving my life. Medically, emotionally, family, friends, and all my virtual friends supporting me always!






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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, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.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.