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

Sunday, May 7, 2017

Scans and More Scans

5.7.17
Hello May!

So where did I leave off... not sure, thanks to continual "chemo fog"!

Darzalex, Pomalyst, Dexamethasone are doing their thing... I hope.. as I really don't know. Last "myeloma marker" labs were 4.13.17 and things looked pretty good then. But that was when I was doing this awesome Triplet Cocktail weekly. Per Darza protocol, I began the every other week regimen this past Tuesday, May 2. Things went ok, but I have to laugh about the crazy bi-polar experiences my poor body goes through.

I pre-med at home with 20mg Dex Steroids, first thing in the morning. Then I'm additionally "pre-medicated" at the chemo lab with a Big Bag of Benadryl and Tylenol pills. When I arrive at the lab, I'm full of life, actually feeling semi normal, and not in too much pain or GI distress. But when the Benadryl meets the Steroids, oooooo boy, it's woozy woozy time, combined with the hyper-bounce from the Steroids. Hello bi-polar reax inside of me lol. I was chatting with my chemo friend Josie/Josephine, supporting myself on my IV stand, when I felt myself getting dizzy and woozy physically, and mentally woozy foggy. It was a weird feeling, going from ok, to drugged up. I finally gave in, and went back to my chemo bed, as I didn't want to pass out and be dramatic. It really is amazing how medications/drugs impact our bodies. I never did much medication prior to my myeloma diagnosis, so all these side effects taking over my body, is still very strange to me.

Tuesday, Wednesday is still ok for me, as the meds are still romping around inside of me. But late Wed I begin to feel a bit icky and bloated, but not too awful. Thursday I definitely begin to wane, and often the GI stuff begins. But this Thursday, I managed to hold it altogether to attend a fun Relay for Life event. Crazy how many myeloma people I now know in my area. 2 of the ladies in this picture (in addition to me) have myeloma, the others are breast cancer survivors:

The Faces of Cancer
Crazy, right!

So by Friday, I really have waned, and the achiness begins. It's like a slow wave or fog creeping into me and onto my skin. I begin to feel like I'm getting "sick" with a flu or fever, then have to remind myself, "O yea, it's Tuesday's "revenge" invading. I feel sick, but I'm not "illness sick". My skin aches, my head aches, my body aches, I have metal-mouth. Fatigue moves in, and I just feel overall lifeless and yucky. I feel bloated, and know what that means... hello porcelain throne for a day or 2. So I've learned now that this chemo cocktail has a slower, more delayed crash, then Kyprolis back in 2015-2016.  Since this crash comes several days after my infusion, it actually fakes me out at first, creating an illusion of thinking I might be ok... then boom, extreme fatigue, yuckiness, sleeplessness, loss of appetite, aches, pains, and just an overall feverish-flu feeling. Then slowly, days later, the side effect fog lessens, and I begin to feel a bit better by Sunday. But dang it, today I tweaked my left upper shoulder/neck area and have a stiff neck, achy shoulder. But I laugh, as I can't believe the day I should begin getting a break, I get zapped by a random muscle ache. But hmmmm, maybe not so random, as I get these achy muscular, nerve things often now...  

I managed to take my "Skeletal Bone Survey Scan" on April 25. I knew I wouldn't know much until my upcoming Doctor appointment on May 16, which is also my next Darza infusion. So I wait and wonder.., wondering what the xrays will reveal. My last scan like this was a bit over a year ago, so I should have done this sooner in the year. I let the Rad Techs know of a few areas I was a little concerned about, and they made sure to scan most all of me from head to calves. See, back in 1998, I had a benign "Neuroma" tumor removed from my right side neck, shoulder, clavicle area. I remember for years feeling this weird bump clunking into my collar bone. It eventually grew to olive size. When I alerted my GP, he quickly scheduled me to have it biopsied. OUCH times a million! I remember it was so incredibly painful, and I totally did not expect the intensity of pain when the needle pierced the lump bump. Owwweee! Silly me, I had planned meeting family and friends for lunch after the biopsy, so clearly, I had no clue what biopsies felt like back then lol!!!  Fortunately the lump was determined to be Benign. I had surgery a few months later to remove it, as it was bunch of nerves growing into the tumor, or the tumor was a bunch of nerves, so the Doctors were worried it could eventually cause right side dysfunction and a variety of nerve damage issues, beyond the immediate area. I recovered just fine from that, but still have some weird twinges in that area, but the tumor never grew back.

But sometime after that, I noticed I had a pea size bump on my right side skull, a few inches above my ear. Again, didn't really give it too much thought, but over the years it's grown ever so slowly to blueberry size. Yes, I've shown my Drs this over the years, but no one seemed too concerned, as it didn't seem to be growing fast and didn't cause me any discomfort or pain. I mentioned this to the Rad Techs, so they would make sure to image that area. I do think "something might be up", as I received a call from Radiology that my Dr has requested another type of scan for me. I'll call tomorrow and schedule that... Yep, the myeloma ride continues.. on and on and on. I just can't catch a break... 

In middle of all of this, I managed to attend the annual City of Hope BMT/SCT reunion. My myeloma buddy Gary (my neighbor, believe it or not!) and I went together. Big event. Big media event. Big celebration for hundreds, thousands of families, survivors and all of the medical staff members in the BMT SCT department. Quite a special event annually. I went through my blog and pictures and found most all my SCT reunion pictures. 2010 to 2017, pretty remarkable huh! Sometimes it really hits me how amazing it is, that I am still here. I never thought I wouldn't be, but that was my minimalist denial side. The more people I meet, the more I read, the more myeloma groups and stories I read, the more I realize how remarkable it is, what I have been through and continue to go through. Some have it so much "worse" than me, and some have had remissions without treatment for years and years. Myeloma morphs so differently for everyone, and am really beginning to fully grasp what my form of "high risk" myeloma means. I get "bad" fast, but I respond to treatment fast. Then I become refractory to the treatment, have to formulate a new treatment plan, get better, then get worse. Then get better, then get worse. 7 years of this... wow...

 Yippee!
Celebrating year #7

 Myeloma buddies, Julie and Gary

 Dr Farol and me
He will always remember that I was the only patient
that "never unpacked my suitcase"
during my July 2010 SCT :))

 Gary, Dr Farol and me

 My big cheese
Dr Spielberger and me

2017-  Look at all those BMT SCT Survivors!

2016
2016, my 6th year reunion
I did not attend as it was pouring rain that day

2015
2015, my 5th year reunion
Me and Dr Spielberger, cupcakes in hand

2015
Dr Farol and Dr Chai

2014
2014, my 4th year reunion
Dr Kogut and Dr Spielberger

(Still looking for my 2013 reunion picture
which would be my 3rd year reunion)

2012
2012, my 2nd year reunion

2011
2011, my 1st year reunion
visiting the hospital floor where I stayed all of July 2010

2010
July 5, 2010
Ground Zero
The moment my stem cells arrive
and one of the reasons I am still here

And finally, here I am with my daughter
July ?, 2010, a few days after high dose Melphalan
and infusion of my stem cells... little did I know what was to come..

Yes, I have survived 7 years of myeloma treatments, and I have no idea what's coming down the train track for me. Not sure if the cancer train is headed away from me, or coming right at me. I'll be sure to let you know what I find out regarding what is found on the Scans. Not even sure what type of additional Scan they want to do on me, but I'll know that when I call tomorrow. Until then, I battle forward, always optimistic, with a touch of denial, a pinch of WTF, tons of gratitude, and continual bewilderment that am in the situation I'm in.

 Hello from Birdie!
Here's Birdie's Blog :) 

Hello from the chemo lab-
Thank you friends and strangers
for reading, caring and commenting.
I love hearing your story too.



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


8 comments:

  1. AnonymousMay 08, 2017

    Hello again Julie!
    I always check in to see your "7" posts!
    I love seeing all the photos, especially the one of the Cancer Fighters..all you ladies look amazing and yet if someone were to see you all on the street randomly, they would never guess the battles you have faced. It is quite amazing to see!

    Wishing you all the best for your up coming appointment, trusting and praying that your new treatment regime will continue with its success =)

    Una

    ReplyDelete
    Replies
    1. Aww, thanks for checking in and posting Una! Glad you are enjoying my "On the 7's" posts :)) Yes, myeloma in some ways is so "invisible" and most people just don't understand how serious it is, because so many of us can look "normal" on our "good days" :)) Hoping your mom is doing well, and Happy Mother's Day to her on Sunday or on Canadian Mother's Day! xoxo

      Delete
  2. AnonymousMay 08, 2017

    I am so glad you could enjoy the celebration. I hope you know how much I digest all your journey to help make decision for mine. I value the information and the emotions you share. Take care, praying for good test results and labs. You are one special lady, but oh, wouldn't it be nice just to be a normal lady for a while :)
    Jan

    ReplyDelete
    Replies
    1. Hi Cowgirl friend :)) Thank you so much for your supportive comments Jan! Glad you enjoy my monthly musings. Sometimes I go back thru my posts and ponder my own ponderings. But, I would rather be riding the range with you and yours! But petting and picking up "apples" suffices for me. We are very fortunate for our "horse therapy" right. Take that myeloma!! love and hugs for all your support Jan :)) xoxo

      Delete
  3. I will pray the best for your future.

    ReplyDelete
    Replies
    1. Thank you very much Anuj!

      Delete
  4. Replies
    1. Yes! I hope for happiness for Mankind too!

      Delete

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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.