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Wednesday, November 28, 2018

Radiology Consult, Pills and more Pills, My Myeloma Life

Hello 11.28.18

And the anniversary countdown begins. Well it's already begun, as this time of year, I can't help but think of what I DIDN'T KNOW THIS TIME 9 YEARS AGO! Yes, Wow, 9 years ago, I was in the process of being diagnosed with Multiple Myeloma. Multiple Who? Multiple What? Myeloma? Not MY-eloma! Yes, MY-eloma. Crazy, random, incurable Myeloma became my new identity 9 years ago 12.30.2009...

But this time, 9 years ago, I just thought I was extremely exhausted and fatigued from working and doing too much. That I was "only" anemic, weak, breathless. I just thought my crazy bleeding out was because of "allergies", and "that time of life for women"...  I thought all my other "weird" symptoms were just "temporary" weird feelings from "getting older", as I had just turned 50. ahahahaaaa..... I was so naive, so ignorant, so in denial. But of course I was. I was always healthy, and there wasn't any cancer in my immediate family. So I never gave my symptoms "serious" thoughts! December brought many appointments in medical departments I never ever would have connected to me!!!


I'm leaving soon for another Radiology consult, planning appointment. So I will continue my story later today... Fortunately, my extreme bone pain has subsided a bit. Still there. But not the intensity of July, August, September! I never want to feel that way again... but who knows what Myeloma has in store for me.... Looking into that "crystal ball" may not be good a idea, if we can't alter the outcome, right?!

CT scan day after my birthday

I've had so many scans and xrays this year
that I am probably radioactive by now :))

Hello 10 Dexamethasone steroids,
8 Cytoxan, Cyclophosphamide pills-
every Monday
Along with daily Acyclovir,
daily Mepron (Atovaquone),
And B12, D3, low dose Aspirin
I need to take a picture of all of my colorful pills!

Ok, I'll be back to update you with what the Radiology doctor recommends for my holey, lesions, tumorous bones!

=============

So I met with a very nice and knowledgeable Radiology Oncologist today, who noted that I have so many lesions, holes, plasmacytomas etc, that "we can't radiate your whole body" lol .... "fortunately most of them are smallish, but the concerning ones (larger) are in your spine, sacrum, hips, pelvis, etc, where you are experiencing all your pain" .... and yes, the horrible, horrendous, shocking, debilitating, pain I experienced in July, Aug, Sept, was related to pinched nerves from the spinal tumors, etc. Radiation for myeloma is often referred to as "spot welding" lol

Unfortunately, the CT scan report was not processed yet for her viewing today, as I had the scan the day after Thanksgiving, at private radiology lab, outside of Kaiser, so they are waiting to connect all the dots. Fortunately, the CT technician had given me a CD copy of the CT scan, so I passed that on to my radiology oncology doctor today. This happened as my appointment today was bumped up a week, from a previously scheduled appointment for next Wednesday. I'm not upset that the report wasn't available, as the holiday weekend complicated things, as well as the earlier appointment, as well as using an outside of Kaiser lab.

After almost 9 years of this crazy adventure, I hardly get bothered by much, as Kaiser is so good at providing services, and getting things where they should be, when they should. I've always received my specialized chemo (pill) deliveries expedited, accommodations for appointments are always made, the staff is always so friendly, caring and quick to fix any issues that come up. In other words, I have been very very fortunate to have amazing care from all perspectives- doctors, nurses, staff, pharmacy, etc! And I won't even mention how unbelievable my insurance coverage is, as my heart breaks for so many patients I read about that have lousy coverage, or super high copays...

So the next step is a multiple appointment, hours long analysis, mapping of where I will receive the radiation.


Yep, myeloma eating up my bones, causing holes, tumors, lesions and pain, is all too real. I just still can't connect all this with me. I always feel like I'm consulting with "colleagues" regarding someone else.

Can you believe I've been writing about all my adventures for 8, going on 9 years now, and that I was told "something very serious was wrong" with me, way back in November 2009. How crazy is that!!! Yep, Myeloma is the "gift that keeps on giving"... forever and ever... continuous treatment, no breaks... unbelievable how my life has changed...

Hope all is good for all of you, and if you're a warrior buddy, your treatments are livable and effective. I always love to hear your status, treatments, side effects, and how you're doing, so never hesitate to comment! Thank you everyone for all your good wishes, support and comments!

Goodbye November, see you in December friends!





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4 comments:

  1. LindaNovember 29, 2018

    I am so happy you are moving forward with radiation. I know it all seems overwhelming at first, but once you get all set up, you will be in and out of there in no time! And, you will have bragging rights for tattoos, well, technically tiny little dots! Best of all, you should feel significantly less pain in the area being radiated! By Christmas, you should actually be able to enjoy yourself! The fatigue was not overwhelming for Ernie. Someday I will show you his scan with “innumerable lytic lesions” and a plasmacytoma on his right 6th rib. And remember, he is the guy who did the treatment and managed to fly to Reno and hike in parks all around Lake Tahoe, walk the beaches of our NC shore, go to the Peach Bowl, have a second stem cell transplant, drive to Canada and back, and fly to Orlando before Thanksgiving...all with one kidney and foot drop! You’ve got this MM warrior princess, and you should be able to enjoy a nice Christmas with less pain!

    ReplyDelete
    Replies
    1. JulieDecember 08, 2018

      Hi Linda! Thank you so much for all your support and information. As I navigate my myeloma treatment, I always think of Ernie and all that he has been thru. And then what you mention above, which I have enjoyed thru all your posts, wow! What a Warrior he is! So much stronger and more energetic then me! It's truly amazing what myeloma has done to us internally, but here we are, 9 years later, and yes Ernie has been thru so much!!! Thank you Linda for encouraging me, and being such a wonderful friend, not to mention sharing all your wonderful adventures and beautiful family with me :))
      love and hugs and endless thank yous!!! xoxo

      Delete
  2. MattNovember 29, 2018

    I'm glad your pain isn't as bad. 9 years...wow, hard to believe isn't it.

    ReplyDelete
    Replies
    1. JulieDecember 08, 2018

      Hi Matt, yes, I can't believe my 9 year anniversary is coming up in days! We are such Warriors, right :)) So glad your treatment is cruising and working so well for you. I should ask you on your blog, but do you have much bone involvement? Hopefully not! Thanks for always checking in and being so supportive :))

      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.