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…)
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.
With Chancellor Dr Dianne, Tanya, me and 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.
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.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can