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

Tuesday, April 9, 2019

This Life, These (awful) Challenges, These Joys

Hello 4.9.19
Hello April
Hello Friends
Hello another month of unwanted challenges and wonderful times
Hello to tears, frustrations, meltdowns, laughs, good times and gratefulness
Hello to Life with 2 Terminal, Incurable Illnesses...


Here I am, riding on 40mg Dexamethasone Steroids, writing this post, late at night, early morning... as again... my life is just so crowded with sooooooooo many needs and caregiving, but also with many wonderful times. You don't even want to know how late it is, rather how early it is, this 4.9.19 lol.

Crazy how my husband's Alz situation has so taken over our life, and Myeloma is somewhat in background now. What? Myeloma in the background!! I hardly have time to focus on me, pay attention to my side effects, and take good care of me as I used to... We'll see what my labs say in a week about this. I really don't know how I am doing all that I am doing. Just one foot in front of the other, one task at a time, one need at a time... And it's so bittersweet when Jim says "Thank You" for the caregiving things I do. He'll thank me for giving him cereal and milk, saying "how delicious it is"... one foot in front of the other, one task at a time, is what I do. I'm not always a "nice" person. But I am learning fast to edit my words and what I say, constantly telling myself, "Just Shut Up Julie" "Shut Up, Shut Up, Shut Up"... "It's the disease Julie", "He can't help what is happening to him, and what his needs are".... Laundry, laundry, laundry. Living with 2 heads on my shoulders... Animal care, but lots of animal laughs too. Lots and lots of bathroom "activities". Lots and lots of cleaning and sanitizing. Then Luci the 9 year old kitty cat throws up. Something has changed with her, and all the food I am trying, is not agreeing with her... remember when I was diapering our 20 year old cat... what a wonderful comedy show my life is! But I always remind myself, except for our incurable illnesses, most of my current responsibilities were a previous "choice". All of the critters we are responsible for, we invited to live with us. Bodies get old and fail. Bodies get sick. Bodies need care. I, we, committed for life, human and animal. So I march forward, one chore at a time, trying to take healing deep breaths... reminding myself to just breathe...


I say myeloma is in the "background" now,... as myeloma has CONSUMED my life and thoughts for over 9 years. Side effects, treatments, appointments, researching treatment options, talking about it to anyone that asked about my situation, constant wondering Not "If", but "When" my current treatment cocktail will fail. No I am not a pessimist, remember Myeloma is Incurable, Terminal, but Treatable... Reality is Reality. I feel so fortunate right now that my current crazy "Monday Medication Madness" of 40mg Dex steroids, 1 Velcade shot in the "belly jelly", then 8, yes 8, 50mg Cytoxan pills with dinner, is still "working". Add in Acyclovir daily to prevent Shingles, low dose Aspirin, a few vitamins- B12, D3, Thyroid pill, and Mepron (anti viral pneumonia liquid, when I remember to take it)... I just cannot believe how my body can digest and handle all this! All my organ status labs are good, very good according to others who's aren't as low as mine. Maybe it's all the diluted (100%) Cranberry juice I drink for hydration. Yes, myeloma has taken a back seat to Alzheimers. Insane situation from every perspective. Oh wait... lest I forget... my myeloma is still over 3x the high end of normal... I'm in "ok", not ok, status...


I still have Surprise Volcanic diarrhea, which leaves me housebound on crash days, and other days, as there's often a lot of "Surprise" to this side effect. This all too familiar event visits me on days I think I'm ok. Or it visits me at a time of day that surprises me. So thankful I am home, when this biological surprise sabotages me. I was out in the horse arena yesterday, lovely warm day, soaking in the rain nourished green trees, green hills and the flowers bursting out, when suddenly, and yes I mean Suddenly, it's wow!... get to the house now Julie! I "barely" made it! I'll spare you the details. That's the suddenness and surprise of this crazy cleanse side effect. No cramps, no pain, just total Urgency. It's the "cleanse" non cancer patients "pay for" lol!

How can life be so awful and wonderful, at the same time. Why did we both get so sabotaged with such serious illnesses. Yes I always knew Jim would age faster than me, being so significantly older than me, but seriously Universe... all he wanted to do in his retirement was walk without pain, garden our property, do healthy outdoor chores, enjoy the animals and his family, etc. His life is completely stolen from him physically and mentally, with moments of clarity here and there... Our life is a bad movie, that I just can't believe I am unwittingly participating in. But again... I have soooo much to be thankful for, in others areas of my life.

My labs from Sunday show I am borderline "Neutropenic".
WBC = 2.4
ANC = 1.2
RBC = 3.5
HGB = 11.7
CREATININE = .65
GFR = 97
ALT, AST, AP, BILIRUBIN = all quite low (low is good in this case)

I take the Myeloma specific labs later this week, for my Dr appt April 15th. Can't believe how fast the weeks go, but I am glad they are, for multiple, complex reasons... but in this case, so I can see my monthly cancer status. How crazy this 9 year journey of living Lab test to Lab test is, just to stay in touch with my survival status. Currently my IGA "is only" 3x the high end of normal" lol, at 1260, (normal rage is 70 - 400). I didn't get around to taking screen shots, that's why I'm reporting all this like this. (Booo on Kaiser's website "upgrade" view, as I have lamented previously.)

I mean seriously, how nuts is it to live like this, wondering when myeloma will overpower the treatment, and we have to race to figure out the next "smarter than myeloma" treatment plan. When I write all this, I just smirk and shake my head, how UnReal all this is... what the heck happened in my life... oh well... onwards, one challenge at a time...

In in between all this medical nonsense, chaos and unbelievable physical and psychological challenges... our son Scott turned 33 and our daughter turned 31! We managed some wonderful celebrations, that I never thought either Jim or I would be here for. How "lucky" are we!

Here's a slice of the happy side of our life:

This Is Us

Happy 33rd to my Amazing son

Birthday boy Scott and my dad Hal
Who's 92, and in better health than all of us!

Ashley and Jim and the doggies

Birthday boy and the doggies

Yippeee! Our hens are laying an egg or 2 a day

Wonderful mini visit with Alissa's 
amazing childhood friend Michelle

Chemo today before the birthday celebrations
Cancer knows no holidays

Spa date with the girls! Alissa's childhood "pony pal" friend, 
who's now a DVM! So proud of you Dr Courtneigh!

My Amazing birthday girl!

The 31st birthday crew! Love them all! Lucky me!

And my "famous" pick your fave flavor
Ice Cream Mud Pies for the Birthday "kids" 
They buy the ingredients, I "assemble" ... 
Another eating party coming soon!

I'm so fortunate, so lucky, so blessed
in so many ways... I work on keeping my sadness
in check and in perspective, moment by moment

And so, another day, week, month. Another set of challenges beyond challenge. I sometimes have chest pains from the stress. I will yell at the Universe later today, tonight, tomorrow, during my steroid crash... but wait... I don't have much time to focus on me right now. Perhaps that's a "good thing"...

May your life bring you joy, happiness, dreams fulfilled, and the strength to confront your "challenges". Thank you for reading and caring about my life and my medical and emotional roller coaster.



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4 comments:

  1. ellen goldsteinApril 12, 2019

    Hi Julie, Love your posts, as always. Sounds like you are doing sorta kinda OK... I also get velcade, but they are able to give me the injection in my arm. Maybe your arms are too skinny for that? It does make things easier, if that's possible for you.

    I am also a caregiver for my mentally ill daughter. So, I know how it feels to put yourself second, all the time. I don't have all the responsibilities with animals, although we do have a gaggle of guinea pigs. My husband and my son take care of those. I also have a home based business, which has its ups and downs, but it is a good distraction, if not always a way to make extra money, anyway!

    Hang in there my friend. You are one fantastic human being!

    ReplyDelete
    Replies
    1. JulieApril 20, 2019

      Hi Ellen! Thank you so much for checking in! I know others do Velcade in the arm, and I forget how we got started with my "belly jelly" shots. So far, I don't have the awful nephropathy I so feared, so I'm "sticking" lol with the tummy injections. I just wrote about increasing my Velcade dose in my 4.19 post above. Do you have any side effects from Veldade? Are you doing Dex too?
      Yes being a caregiver is so challenging if we were well, but dealing with our drama, only complicates thing. I am sorry to hear of your daughter's struggles. Hoping she is getting help that is easing her conflicts :((
      And I remember your funny story from before about all your guinea pigs. Animals are great therapy for us!
      Happy Passover, Happy Easter, Happy Spring. Stay well, and one foot in front of the other for us, right xoxo

      Delete
  2. MattApril 17, 2019

    Hi Julie, How'd it go at the Dr this week? Thanks for your honest posts. I don't know how you keep it all together, but you do and I admire that tremendously. I'm glad you were able to celebrate your kids birthdays. We definitely have to try and figure out how to have some joy when we're faced with the big unknown. I'm 2.5 years on darzalex and I keep my fingers crossed it keeps working. hang in there!

    ReplyDelete
    Replies
    1. JulieApril 20, 2019

      Hi Matt, thanks for checking in and appreciating my posts. I could say so much more, but I put my filter in lol... so much deeper in all our lives, right... I just posted about my numbers going up :(( and increasing Velcade... blah blah.. but I'm not worried, my MM has always been the extremes of up and down. Soooooo happy Darza has been your Elixir for 2.5 years. I had a good 18 month run with it. Life is very challenging right now, with my hubby's Alz situation. I just can't believe all the challenges life decided to challenge me with. Yes, we must find joy, happiness, fun daily. I work hard to keep it in perspective, but "losing it" more and more lately... but one day at a time... until... thanks for checking in Matt, and I'll go catch up with your posts :))

      Delete

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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.