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Tuesday, February 13, 2018

Blood Test Results and Chemo Lab Aventures

Hello 2.13.18

I'm sneaking in an additional post, with my updated Labs. Thanks for caring and asking to hear my results before my next predictable, "on the 8's post :))


Well as you saw from my previous 2.8.18 post, my WBCs were quite low at 1.9 (normal = 4 - 11), and my ANC at .8 (normal = 1.8 - 7.7), which means, thanks to Pomalyst's power, I'm Neutropenic again. I'm quite used to this now, as Pom seems to do this to me almost monthly now. Early last year, we lowered the dosage to alternating 3mg and 2mg for the 21 day cycle. 4mg is the highest Pom dose. As I write this, I smile at how much a cancer patient gets used to, and adapts to. In the "normal, healthy" world all this is would be so shocking and debilitating. But I've learned to take it all in stride, and know "I can't control the things I can't control"... so I move forward and deal with it the best I can. I don't think I'm shocked by much anymore, regarding my situation. I read so much about myeloma, and understand what myeloma treatments can do to us. I hear so many stories about what other patients are dealing with, and what their complications are, that I am "grateful" for my type of challenges. Sounds crazy, but I'll take the many complications from my extreme compromised immune system over the horrendous bone issues so many myeloma patients suffer from. It's all in what we individually get used to, and learn to tolerate.

I used to fear self administering Neupogen Zarxio injections. I just didn't think I could do it. I wrote a whiny post about it last spring. But I've toughened up, and now it's no big deal, and I actually look forward to these amazing immune system, white blood cell (WBC) boosting shoots for a few days! They're like magic, and I feel better, stronger. The debilitating fatigue cloud is lifted. If just for a while though, as I would have to do these regularly to maintain WBC "euphoria" lol.


Feb 6
NEUTROPHILS, ABSOLUTE COUNT      
0.80 x1000/mcL         
Normal Range = 1.80 - 7.70 x1000/mcL

Feb 9
NEUTROPHILS, ABSOLUTE COUNT
2.97 x1000/mcL
Normal Range = 1.80 - 7.70 x1000/mc
After 3 days of Zarxio injections, just look at this boost! 


WBC's went from a low of 1.9 to a high (for me) of  5.2 !!

With the Winter Olympics going on, I can't even imagine how high and normal the athletes CBC's and other body functions are, to compete at the extreme skill level they do! It's truly amazing what a fit, healthy body can accomplish. I used to ski with my high school ski team, and I later shared my love for winter sports with my kids. They grew up skiing, and then snowboarding, as we would take regular family trips to the snow. Oh, how I miss this. Can't remember the last time I skied, and watching the Olympics now, sure makes me miss being able to do that. Ok, put that on the Bucket List!

There's dysfunction with the mobile version of Kaiser's lab results right now, so I wasn't able to capture a cool screen shot, as I previously have. So here's the copy/paste of my current IgA status, which shows Myeloma's on the move in the wrong direction again, trying to dominate this wonderful triplet cocktail of Darzalex, Pomalyst, Dex steroids I've been tolerating for almost an entire year now! Wow, it will be a exactly year on my next "8" post, 2.28.18, that I began Darzalex.

IMMUNOGLOBULINS G, A, M – Feb 6 2018
  
NAME
STANDARD RANGE
IGA
70 - 400 MG/DL
IGG
700 - 1,600 MG/DL
10/2/17
502
251
11/2/17
580
220
11/16/17
608
247
12/3/17
575
199
12/27/17
519
196
2/6/18
715
226


So as you can see, my IgA is almost 2 times the high end of normal. (I cut the IgM stats out, as they corrupted the chart layout.) I'm "sad" myeloma's on the upward climb again, but I'm certainly not "panicked", as I've been down, rather "up", this road so many times, and have seen my IgA as high as 5760 at diagnosis, Dec 30, 2009, and then in the 4000's almost every year since coming out of remission in 2013. I've just gotten used to so much in the 8 years living with, battling myeloma. Here's where I was just before beginning Darzalex and Pomalyst. Just happened to see this recently, in my old photos:


I confessed to my Dr yesterday that I did reduce my weekly Dex steroids from the recommended 20mg per week to 12mg per week twice this past cycle. I'm concerned that I've been on a steady diet of Dexamethasone since mid 2013 now! I worry about all the side effects, and was hoping my IgA would hold steady on a lower Dex dose, but I'm guessing not :((  So this month I will be consistent and do the 20mg weekly, no matter what "quality of life" events I want to partake in...  Crazy to live life this way, always planning around when I'll feel lousy, always having to allow for the medication crash.

Speaking of SIDE EFFECTS, yesterday was a particularly hilarious day in the chemo lab for me. Hilarious and chemo lab are an ironic paradox in the same sentence, but here's what happened to me. I took my 20mg Dex steroids around 8am for my scheduled 10:30am Darzalex infusion. For some reason, they hit particularly :silly and fun", "warm and happy", just as I arrived to the chemo lab. I know I have written about this previously, but I just can't get over how unpredictable my body's reactions are to these meds I must take to stay alive. Sometimes Dex hits as a less dramatic overall boost, sometimes with a manic bang!

Being so close to Valentine's Day, I brought bags of Dove chocolate for all the Oncology staff (my Dr, Nurses, chemo Pharmacists). I do thank you treats often for this wonderful team, as I want them to constantly know HOW MUCH I APPRECIATE THEIR DEDICATED CARE and PROFESSIONALISM!
I'm naturally an animated, effervescent, communicative person, but Dex just revves that up to an exaggerated level. I do (try) to keep myself in check. As you can imagine, the chemo lab isn't the "happiest place" for most people, and there's no knowing the psychological place most patients are in, when I come bouncing in, silly and animated. I really do make the effort to de-energize myself, and be courteous and "appropriate". I have had many patients ask what meds I'm on, that make me feel so ok, as they want this "happy blast of energy" too.

Mondays, sweet Karen the Volunteer is there, and we've had a lovely friendship for years now. Tragically she lost her husband to stupid cancer a few years ago, and is so gracious to give her heart and time to the patients and staff in the chemo lab. We always have stories to share, and other "regular patients" often join our conversations. 


After I settled in, Karen brought over a lovely patient (named Karen also), to visit with us, that I had met several times before, so our little area quickly became a chatty party. In the bed next to me, was a younger patient, who soon joined in on the conversations. I mention all this, as here we are, all hooked up to IV's, serious chemo meds coursing through our veins, but it felt like gals just having fun conversations in an "ordinary" circumstance. The irony is ridiculous. Chem lab, fun? What an oxymoron for sure! Soon my nurse comes to begin the "premed" process for me, and rather than a drip bag of Benadryl, I'm prescribed the "syringe push" of  50mg of Benadryl. Since Darzalex is a long, slow infusion process, the point is get the premeds going, so we can get thru Darzalex before closing time.


Soon, actually rather quickly, the Benadryl begins to affect me. Putting me into mental sloooooooow mooooo! I feel the Benadryl taking over my being...  down I goooo... my functionality slows, but my thoughts still race. My brain and mouth no longer connect effectively lol! I have a difficult time expressing my thoughts. It's really quite hilarious. I mention it to the ladies, laughing about my disconnectedness. I'm slurring words, trying to finish whatever story I was attempting to tell, but it's all muddled, and confused. The conversation became absurd, as I tied unconnected stories together. What a mess. We all laugh. I try to carry on, but finally, I laugh and tell them, I'm too fuzzy and muddled. Everyone says just give in and sleep, but I've never been one to sleep in a public "fish bowl" like that. But I do eventually shut up, and laugh at my silliness.

I'm sure these sensations could be very disconcerting to many, but I am curious and fascinated with everything I go through. Never before myeloma, did I have medical issues, or take strong meds, so I continue to find the personal "entertainment value" of these wacky experiences so very interesting. But trust me, if I was nauseated or couldn't breathe, or in unbearable pain, or was having serious reactions, I would not be finding any of this humorous! I'm familiar enough with this particular chemo process now to know what's coming my way, so I can be humored how the HIGH of steroids collides with the DOWN of Benadryl. I can only imagine what is going on inside me, bio-chemically. Boom, poof, crash, bang... I picture chemical boxing gloves inside of me lol. One side fighting to be hyper and manic, the other side fighting to chill and relax. It's really quite an interesting experience to go from one extreme to the next, all knowing it's part of the protocol to pummel cancer cells.

And that was my day. Pain free. Hyper-manic. Dulled and calm. Kooky and silly. Sleepy, but awake. Social, but exhausted. Accepting, yet incredulous. Observing my life and others. Always wondering why, how come. How did all this happen to me and the others. It's about 4:30 by now. My Darzalez infusion is finally done. I like to complete the entire hydration bag after the Darzalex, to cleanse my veins, then time to remove my hand IV. Yay, I'm free again. I thank my kind nurse for caring for me all day. I'm readying to leave when I see, our male nurse, giving a young woman a "tour" of the chemo lab. I'm thinking she's probably getting a tour with an "older" family member. Then she looks over at me, and questioningly calls my name. I look up surprised. She looks familiar, but I can't place her immediately. It's out of context. Perhaps one of my past students, here with a parent? I say hello, and "sorry, who are you?", feeling bad I had to ask. I blame it on all the meds, fogging my brain.

Omg! I suddenly connect who she is. One of my daughter's good friends since kindergarten! We both quietly "scream" in excitement to see each other. She comes over to my bed to chat. I ask her who she's here with for the tour. She tells me it's for her... I'm incredulous. I'm shocked. We exchange WTF exclamations over and over. She can't believe her diagnosis either. Happened so fast, just in the last two weeks. We're in our own world, as the chemo lab is closing. I suggest we go out to the waiting area to talk. I want to hear her whole story. My heart is breaking for her. She's too young, too beautiful, too happy. Just recently married, I think 2 years ago. Life is happy for her. Purring along. Now this. I'm shocked. We allow ourselves to cuss, WTF, how come, why, makes no sense. We want to cry, but we're also laughing, as we're so happy to see each other. So much to share, so much to catch up on. It's now after 5pm. Most of the nursing staff has left, but as a few walk out, they see us, and I briefly share her story, and our 25 year history. Incredible. Crazy. So not fair! How does cancer happen? My heart aches for her, and how her life has changed in an instant. A biopsy. A phone call. Life will never be what is was before. We discuss this. But, she'll be ok. She's young and strong. Positive and optimistic. She has the great care I do with Kaiser. And has a great support network. Me included. But still... WTF? Just another bipolar day in the chemo lab.




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



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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 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.