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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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6 comments:

  1. ADJune 29, 2019

    Dear Julie, you sound remarkably upbeat and there’s much to celebrate. I hope things have settled into a bit of a routine with your healthcare help for your husband. Happy 9th Anniversay. I just passed my 15th asct birthday on June 11th. Amazing to still be on the right side of the grass all these years. Keep fighting the good fight with your humor and strong character. You go girl! AD

    ReplyDelete
    Replies
    1. JulieJuly 10, 2019

      Hi AD! Thanks for checking in, and your kind words of support! :)) WOW, I had missed that you are 6 years beyond me! So amazing, so happy for you! YOU give me hope I have more time. Congrats on the success of your treatments and status. What meds are you on now, and how are you feeling? You go girl xoxo

      Delete
  2. MattJune 30, 2019

    wow Julie, you sure have been through it. I just read your Hawaii post. That sucks that you got sick. But as always, your attitude is a ray of sunshine. Cheers to your 9 year re-birthday. I'm glad you are still around.

    ReplyDelete
    Replies
    1. JulieJuly 10, 2019

      Thank you Matt for your kind words of support. Yes, this journey is incomprehensible on so many levels, but we're still here and fighting right! You've sure been thru it too. All of our journeys are remarkable! Hoping you are well, and Darza is still your magic elixir :))

      Delete
  3. OsabravaJuly 02, 2019

    Hi Julie! Happy 9th Stem Cellversary! I'm glad you're still here with us and doing your best to keep your head up. All's well with me, off treatment for the time being, grateful for a break. Hugs to you and hubbie, Bernadette

    ReplyDelete
    Replies
    1. JulieJuly 10, 2019

      Wow Bernadette! You Warrior you!! That's so awesome you get a treatment break! What's your health "secret"?! :)) Congrats on pummeling myeloma and winning. So happy for you!! Thank you for you kind words and cute saying: "Stem Celliversary" xoxo

      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.