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

Sunday, April 8, 2018

YOLO! Another Scan. Another Birthday. Taking Risks for Fun. Maybe Regrets Later!

Hello 4.8.18

So Much To Share! So many results and potential decisions to come! But today was my daughter's 30th birthday, so most of this weekend has been devoted to partying it up :))  I did something this weekend so completely out of my fear of cooties character, tossing my fragile (and current Neutropenic again) status out the window, and living a little crazy this weekend!
But first the headlines:

Thursday I had my first PET CT Scan, and that, and the low glucose, low carb diet, and fasting prep, was an adventure itself! Normally, I pretty much eat whatever and whenever I want, and I tend to be like my hoofed animals, doing a lot of "grazing", so this exact watching of Carbs and Glucose was Not Fun for me! I eat really healthy, trying to get something from each food group daily, but I also allow myself a cookie here and there, or fruit smoothies, or bread products, etc, so this 24 hours was an interesting experiment for me. Not awful, but I sure couldn't be like some that eat Carb free!

Almost time to gown up and go in!

And then I didn't do my math for the food-fast, in relation to my scan appointment time, so I wound up not being able to eat for over 16 hours! OMG, can't remember being that hungry in a very long time. The night before, I had dinner and stopped eating around 8pm, then when I got up around 8:30/9am, I realized the window for eating had closed, as I had to fast 6 hours prior to the 2:50 Scan. Then I was involved in the Scan prep, which included IV radioactive glucose prep for about 30 minutes, then the scan itself, so that brought me to about 4pm! So do the math on that... I hadn't eaten since 8pm the night before! Sorry if I'm sounding like a whinny wimp, but my system has changed so much since myeloma treatments, that I don't do well starving anymore.

Done!

But I of course survived and bolted to our favorite Deli after my appointment, and ordered half the entire menu for take out :)) Wow, I just did the math on that, and... help me out here... 8pm to 8am = 12 hours. Then only water from 8am to the end of the Scan, at 4/4:30 is another 8 hours. So if I can add, I fasted for 16 hours. Silly me, guess I should have gotten up earlier, and pounded down some food before my fasting window closed. But, ugh, I just can't eat first thing in the morning, when I wake up. Oh well, I survived and I WILL KNOW THE RESULTS OF THE PET CT SCAN TOMORROW, April 9th, at my Dr appointment, prior to my monthly Darzalex infusion.

If you recall from my previous posts, Myeloma's on the upward bound again, and I am VERY CURIOUS what the Scan shows, and what my monthly Labs show, and what our next move is, if Myeloma is continuing to misbehave! My preference is to go back to more regular Darza infusions, as I was doing so well on the bi-monthly schedule. I wonder why the researchers didn't include more instruction and protocol in the studies and literature for WHEN Darza stops being as effective on the monthly protocol.

Ironically, while I was in the Scan, I received email notification that my 21 days of Pomalyst had, predictably, plummeted my fragile immune system, and again I'm Neutropenic. Such a funny word, but related to our WBCs and Neutrophils. My WBC is 2.0 and my ANC a lowly .81. Boooo on that, but Zarxio Neupogen injections to the rescue!

Hello 3 days of immune system boost 

But........ here's where things got a little complicated for me...
During the scan, they wrap you up like a mummy and you have to lie perfectly still for the entire Scan! I'm not claustrophobic or nervous for things like this, but isn't funny how when you CAN'T do something, of course body wants or needs you to. So what wound up happening to me, is that I felt my back muscles becoming pinched. Normally one would just move a bit and readjust, but I knew I couldn't so I stayed quiet and still, hoping my back wouldn't seize. I felt stiffness when I got up from Scan, but felt walking to my car would loosen it up. Well the next day, it seemed to stiffen and pinch a bit more, and by Saturday, I was really really pinched and sore, and really began to limit my movement and bending over... 

But wait... could this soreness be Neupogen Zarxio related Bone Pain?? Oh boy, here we go agian... what symptom relates to which event or medication. I did shot #1 on Friday, #2 on Saturday and just didn't know if my tight and tense back muscles were Thursday's Scan related or Zarxio related. But dang am I so sore, stiff and Advil, Tylenol, didn't really have much effect in deadening the awful immobilizing pain. And what a time to have this, right in the middle of celebrating my daughter's big birthday! C'mon myeloma, can't you ever cut me a break?? So knowing we had BIG plans for Saturday night, it suddenly occurred to me, as I finishing up in the horse arena, hoping raking might loosen me up, it occurred to me to take one, just one 4mg Dex steroid pill as an anti-inflammatory. I NEVER take Dex late in the day, as I know it's effects will keep me up all night, but I was pretty desperate for pain relief at this point. So I took the one little Dex pill, and did get a little relief, but was still sore for Saturday night's festivities and still now as I write this... 

But wait... there's more dramatic news... 
Here's what I did so very very very out of character for me... and so very very very stupid and dangerous since I'm so incredibly immune compromised, and don't have an immune system to fight off all the awful human cooties out to bring me down... I tossed my normally unwavering avoidance of human crowds, and public places at all costs, and went to a Country Line Dancing Club with my daughter and her friends for her birthday! YES, WHAT WAS I THINKING!! Well I was thinking... I JUST WANT TO HAVE FUN AND BE NORMAL! I'm such a social person, that being restricted by myeloma's side effects really gets to me after a while. I feel like I am missing out on so much of life. So much of life that used I to participate in. But then again, I just hate being sick, so I just stick to being super ridiculously cautious 90% of the time, and it has really paid off, in terms of me avoiding serious illness. Here's my recent labs showing my compromised immune system:

Barely gettin by... 

Oh yikes, look at that ANC!

But I went, kept my antibacterial wipes handy, tried not to hug closely, did not shake hands, was super cautious with everything I did... but seriously, OMG, the crowd eventually became huge! Hundreds of people by late night. And as you know, being in a loud music venue, you have shout to talk or lean in when someone talks, and I just cringed thinking of all the COOTIES I WAS BREATHING. Yuk!!! ... If I remain well this week, after cootie incubation time, it will truly be a medical miracle! But we had a blast, I stayed out late, and laughed till my sides hurt, and my voice was hoarse, as my back continued to hurt like none other... 


This picture was early in the evening, when they were doing line dancing lessons, before the zillions of people eventually came. There wasn't even room on the dance floor, it was so crowded! So many people, so many cooties. But sooooooo fun with my daughter and her friends! When we got home, I couldn't wait to shower for hours, trying to drown the cooties, but of course that was too late, as just being there, I inhaled so much air borne yuk! I just kept shaking my head at myself, telling myself how stupid that was, especially right off Pomalyst, being on Zarzio injections, and so completely immune system depleted! Yep, I'm nuts. 

Just a few of the groupies, zillions more all around!

And then today, we all went out to brunch, but this was just a much smaller group, on an outside patio, fresh air, and I didn't do the beautiful brunch buffet. I didn't even go look at it, as I didn't want to torment myself. I order only well cooked food when eating out, avoid all fresh foods that can potentially contain unwashed or embedded bacteria, and don't do drinks from the ice machine, as I've read, heard that is swarming with bacteria... so far my persnicketiness has worked, as I am rarely sick, beyond the annual flu season challenges. 

Wow, I'm so lucky!! 

BFFs since elementary school :))
The panda necklace I'm wearing is vintage 1990ish.
Panda's were Alissa's theme since a baby xoxo

Happy Birthday to my baby girl xoxo


So my loyal readers and friends, those are just the headlines, as there's so much more detail within all this detail, but it's super late, 4.8.18 is over in minutes and tomorrow is a big day. I'm counting on hearing the results of my PET CT Scan, seeing my the results of my recent labs, telling of myeloma's status, then it's IV hook up time for Darzalex. And yes, I am looking forward to the "calm" of the chemo lab, where Benedryl might knock me out, as it battles back the roaring 20mg or 40mg Dex roids I'll take in the early morning. Many Darzalex recipients are anxious to try out the new shorter infusion time I've read is the trend now, but not me, I like the longer, safer, slower infusion time, not to mention, the possibility of sleep... 

Thank you for reading and caring about my life and story. Knowing you're out there, looking forward to my updates, gives me the motivation and commitment to keep on posting :)) Please let me know who you are, where you are, how you are, and how my posts impact or affect your life. I truly enjoy your comments, and you sharing your story with me!! 

If I have BIG RESULT NEWS, I'll post again before my next "on the 8's" :)) 


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



2 comments:

  1. So glad that you were able to go out and enjoy yourself and your daughter's birthday party! I hope you don't get sick from it! To tell you the truth, since 100 days post stem cell transplant, I haven't even thought about how my immune system is compromised, and haven't done anything to prevent infection. Maybe I should be a bit more cautious. I started the 3mg of Pomalyst night before last. So far, no dizziness. But when I was on 4mg, it took almost 2 weeks before I got dizzy, and I got sick at the same time. So I am hoping that the illness somehow caused the dizziness to occur, and that it just continued because of the Pomalyst. Only time will tell. I hope your back feels better, and I hope that you continue to get out there and enjoy your life!

    ReplyDelete
    Replies
    1. Hi Scott!
      Thank you commenting!... you'll see on my post today, what happened to me trying to step out of my cootie free bubble... I should have known, yet I took the risk to "play", and myeloma humbled me :((

      I never had dizziness from Pomalyst, just super low WBC, ANC resulting in an always compromised immune system. From the beginning, 8 yrs ago, that was always my issue. My IgA type myeloma lives primarily in my immune system, so I've always been "OCD" regarding exposing myself to germs :(( Limits my life a lot... but I just HATE being sick, so I try to avoid it all costs...

      Because of all this, I'm on Pom 3mg/2mg alternating for the 21 days. Follow your WBC, ANC, and entire CBCs to see how Pom is affecting your immune system. Do you take Pom at night, or during the day? I took Rev at night, years ago, and Pom at night, so whatever side effects there are, I think they level out at night.

      Sounds like you have a super strong immune system if you don't have to pay attention to it much! I am so happy for you, regarding that. Hoping you are doing ok, and out and about enjoying. And again Scott, thank you so much for reading, checking in and commenting :))

      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.