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

Saturday, May 27, 2017

Injection Rejection- Time to Grow Up and Accept my Circumstances

5.27.17

Hello Loyal Friends and Loyal Followers...
Here we go again... thought not much would happen in just 10 little days between posts, but, wow, do I have some stories for you :)) Let's begin with the "drama" and work up to the "fun".


After my May 16 Dr appointment and learning more about my "Hole in my Head"!!!, I began my 7 day monthly break from Pomalyst. As myeloma patients well know, we're granted a tiny medication "holiday" between never ending cycles of treatment medications. The length of the break varies, often different with IV infusions and pill form chemo, immunotherapy. But I was lucky this month, that my Pomalyst and Darzalex break happened around the same time. As the "half life" of the meds begin to wane, I begin to feel a bit better. The "chemo fog" lifts and I have a little glimpse of the ol Julie before diagnosis. I had a few "important" events coming up, so I was happy the medication break stars aligned for me. However... potentially ambushing my plans, was knowing my CBCs revealed I was Neutropenic again.  No problem though, Neupogen Zarxio to the rescue!

On my last Darza infusion day, I was scheduled to receive my first of 3 Neupogen Zarxio shots, but towards the end of the day, the chemo pharmacist noticed my insurance required I pick up the injection Rx and SELF Administer Zarxio. Saaaay Whaaaat? The nurses and I were a bit confused, but it was the end of the day, and since I had been at the chemo lab from 9:30 to 3:30+, I was more than ready to get home. I didn't worry about the "confusion", and not receiving the shot, as I had previously checked in for a "Nurse Visit" at my local clinic, and the nurses administered the shots for me there. No problem I mused, I'll start Zarxio the next day, return to the shot clinic 3 days in a row, as I had done previously. The following day I showed up, checked in, received Zarxio shot #1, no problem. But when I checked in day #2...

It was confirmed, that in fact yes, my insurance does REQUIRE I pick up the Rx and SELF ADMINISTER my shots. Something about my "young age" vs those on Medi-Care? No way, there must be some confusion I plead. What changed? I've had numerous rounds of Neupogen shots administered by the "Shot Clinic"... what's changed, why? No Way... I DO NOT feel qualified or comfortable self injecting! (Back in June 2010, my nurse friend Jan met up with me daily, to give me my Neupogen shots prior to my Stem Cell Harvest, in prep for my Stem Cell Transplant July 2010, but I thought that was "different" then, due to needing 2 weeks worth of shots...)

 June 2010, Nurse Jan and I,
Neupogen shots "on the go" lol :))

I'm in a bit of a mini panic now, as I showed up and expected to receive the injection without a hitch, only to find out, I must "cowgirl up", grow up, and learn to self inject! NOPE! not going to do it, I pout internally. I'm truly shocked. I don't feel brave or qualified to do this. No way, not gonna happen. The nurses are so kind, explaining the situation, apologizing for the confusion, calling my Oncology Nurses and trying to figure out what's up, what changed. They really wanted to help me out, making numerous calls, and offering to teach me right then and there, how to self inject. Intellectually, I know it's really "No Big Deal". But emotionally, I wasn't prepared for the change! Meanwhile, I'm watching the time, as I have a "once in a lifetime event" scheduled that evening, and time is getting short for me. See, I was due at my College for a "Meet and Greet" ceremony, to meet my very first "Counselor Julie Scholarship" recipient! Seriously life, what's up with the ambush!

I work on controlling the lump rising in my throat, knowing I have to switch "identities" and roles fast, leaving "Patient Julie" behind, to quickly become "Counselor Julie". I let the nurses know I just cannot do this right now, as it's just too emotional for me, and I have to be somewhere soon, "parading as ok", in just a few short hours. Nope can't do this today... or maybe ever. I feel like a failure. I feel stupid. I feel ridiculous, as I know millions of people self inject. But I just don't feel comfortable doing this, bottom line. I accept the Charge Nurse's offer for an appointment the following day, to "learn" how to give myself injections. She's so kind, so reassuring, so positive. She is concerned I won't receive my scheduled Zarxio. She reassures me I'll do just fine. I leave the clinic, no shot administered, feeling emotional, mad at myself, and so mad at myeloma for ruining my life. I Don't want to learn how to self inject. Period. I just want to be a well person, without all this medical drama.

I have a wonderful evening meeting my first ever "Counselor Julie Scholarship" recipient, Tanya. What an inspiring woman! What an honor to have her selected to receive my scholarship. She's worked so hard to be her. She's currently a 4.0 Valedictorian. We connect on so many levels. What a beautiful evening, me masquerading as "normal". I return home late that night inspired, but mentally and physically beat up, exhausted.. trying to process my crazy life.

 The honor is mine!
With Chancellor Dr Dianne, Tanya, me and son Scott.
Inaugural presentation of the Counselor Julie Scholarship
to Ms Tanya, Most Amazing Student Ever

 All smiles of congratulations,
Tanya and me

 So lucky to have Tanya as my very first recipient! 
Here we are, Tanya, me and my son Scott


The next day I returned to the Shot Clinic, convinced the insurance "mistake" has been figured out. Surely, I will be able to pick up my Zarxio Rx at the pharmacy and the nurses will be able to give my shot, no problem. I check in, confident I'll be in and out fast, and on to my next activity. As I'm waiting, I'm processing the possibility of having to self inject. I'm remembering over 37 years ago when my horse vet dispensed injections to me for my beloved horse who had some sort of barn influenza. I will never forget how nervous I was at the thought of giving him shots, but at that time, I was still considering a Veterinary career path. I accepted the challenge and accepted the injections given to me to give to my horse. You know how professionals always seem to make things "look so easy". Well after the Vet demonstrated how to do it, injecting swift and precise, I had confidence I could do it. Ha! Not! I wound up sticking the needle in the wrong place, blood spurting all over both of us! When drawing the shot syringe back, I saw more blood than medicine in the syringe! I panicked, deciding to never ever to attempt that again! Yep, No Way do I feel qualified to self inject Zarxio into myself.

I'm called in. I thank the Charge Nurse for working with me, and being so understanding of my fears and insecurities. I'm sure she's going to accept my Rx bag of Zarxio shots, administer one for me, and off I go like before, returning the next day for shot #3.


Nope. Not permitted. I must learn. I must brave up and learn how to self inject, or forever rely on others to do this for me. I have always been firery independent. I don't like relying on others. I like independence. I like accomplishment. I like feeling in control of myself and my body. I must accept my situation, I tell myself. Brave up and learn Julie. I begin to feel very emotional. This is pushing so many buttons on so many different levels for me. My nurse is trying to reason with me. I get up, I pace. I get emotional. I say I just cannot do this. She reassures me. "Yes you can, you can do this. You can learn." "No I can't. I don't want to", I weep. I feel so stupid. So ridiculous. So weak. So pitiful. So dependent. So sick. So cancerous. I feel so out of control of my life. Myeloma has completely stolen my life, I weep. I can't do this. I apologize. I got up to leave.

I cried. I cried because 7 years of battling stupid myeloma, hit me today. The symbolism of injecting life saving meds into myself hit me. I cried because I'm scared. I cried because I have little control over what my body is doing to me. I cried because I don't want to give myself shots. I cried because I have to. I have to be brave and learn to do this. I cried because medications are keeping me alive. Without them... well... you know... I cried because I now know, and have to accept, I have a Hole in my Skull. I cried because myeloma is eating me up from the inside out. I cried because buried buttons were symbolically pushed, with the push of the needle. I weep, feeling sorry for myself, feeling so stupid and incompetent.

I apologized to my nurse for my "breakdown". I said, "I just can't do this". She said, "yes you can!" I'm right here with you, you'll do fine". "I'm so scared, what if I do it wrong". I told her my horse story. She smiled, and said, "I'm right here with you." "You can do this". Again, I almost left and gave up, but I didn't. I bit my lip, grabbed my tummy fat, and pushed the needle in, because I know I have to grow up and be brave. In seconds it was all over, and I felt so foolish, yet so accomplished. I weeped again. But I sucked up my emotions, thanked her so much for her patience and understanding, and for "making" me, encouraging me, to do this. I walked out of the clinic an emotional wreck, but feeling so accomplished! I counsel the world about bravery, taking risks, acceptance of our circumstances and dealing with our emotions and accepting challenges. I know all this intellectually. But, the symbolism of giving myself shots was just overwhelming to me. I have cancer. I'm sick. Without medications, I die.

On the way home, I stopped and bought 3 different types of Ice Cream. And picked up my next round of Pomalyst chemo pills.

 I chose Mint Chip, Peanut Butter Cup, and 
some extreme Chocolate Chocolate Cookie Dough lol


Hello Rx's for Pomalyst 2mg and 3mg
and Zarxio shots for self injection


The next day, I celebrated life with my cancer girlfriends at Relay for Life. One day I am accepting I must give myself injections, and really feeling like a cancer patient. The next day I attend this wonderful event, hearing stories that are so compelling; life stories much more challenging than mine. I tell myself to shut up and suck it up. It could be so much worse, as so far my triplet cocktail is saving my life. I may be Neutropenic but the chemo meds are currently working for me. For now that is.


 4 different cancers represented here

Yep, 7 years, take that myeloma!

Girlfriend Janet of 37 years!
2 different cancers here

 2 different cancers here
Girlfriends of over 25 years,
Judy and Suzanne

Myeloma sisters Elizabeth, Cynthia, me

Couldn't find my luminary bag, 
so this Julia and I will celebrate together

Here we are, featured in the luminary slide show

Pooped out, by this time, with all the "drama"
and excitement of this week. 

I celebrated us Survivors in the morning at the "Survivor Walk". Stayed for a few events, then went home, hydrated, ate, was going to take a nap, then I remembered... remembered I needed to give myself my 3rd Zarxio shot! Oh boy. First time self injecting at home, no supervising, supportive nurse staff. I jokingly asked Jim if he'd like to inject me, and he gave me a look, a hearty laugh, and said NO WAY!! I took out my Zarxio shot, let it come to room temp, oversprayed my belly with alcohol on the opposite side of the 2nd shot, grabbed some belly chub, and boom, cowgirl up, in it went. Bingo, injection success! Whoo hoo, I did it! I'm all grown up, a "right of passage" completed. I'm an independent injector now, confirming to me I'm a sickie, I'm cancer patient, I need medications to stay alive. But alive I am, and I'll live life to the fullest on the days I can. 

I'm waning again now, as I'm a week into Pomalyst. Glad all these special events happened when they did, during my mini medication break. Now it's back to the chemo lab on Tuesday for Darzalex # 11. Monday I will take pre infusion labs, and we'll see how my CBCs are holding up. Perhaps another round of Zarzio shots? Bring it on! I'm ready for you needle in the belly. 

Thank you for reading, commenting and checking in on my crazy adventures in Myelomaville.



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



3 comments:

  1. AnonymousMay 28, 2017

    Wow, nothing like being a MM punching bag. Totally, sucks. I hate MM. For all those who want to spin it positively...they just have no clue. There is nothing good about MM, but there are very great people (Julie) who it attacks, and they still shine light in the darkness. I am amazed how you bless others even in all the pain and loss. What an honor for Tanya to be chosen for a "Julie" scholarship. Great counselors are few and far between, what a special gift your are, Julie. XOXO

    ReplyDelete
  2. AnonymousMay 28, 2017

    I didn't sign my comment...can you still tell it was from me? JC

    ReplyDelete
  3. Aww, thank you for your kind words of support always, cowgirl JC! You are included in the MM club of amazing and great people, who have touched the lives of others deeply. It is unbelievable how challenging myeloma is, and so "invisible" to most "outsiders". I bet most people in your circle don't have a clue all that you have been thru also! Thank you Jan for appreciating my adventures, and I am sad my career of "Saving the World, One Student At a Time" is coming to a close. But I will still find a way to impact the world, just as you do :))
    Thank you so much for your loyal support and friendship JC xoxo :))

    ReplyDelete

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.