Spotlight on Jojie Misenas:
I am my husband’s caregiver
Editor’s Note: The Spotlight section of Myeloma Matters features stories and reflections supplied by members of our community - those living with myeloma, caregivers, healthcare professional - in their words. The views expressed and shared are those of that individual. We hope you enjoy meeting our 2021 Spotlight Stars and your fellow Myeloma Canada community members.
 
We recognize that everyone’s journey and experience with myeloma is different. If you would like to share your experience in a future issue of Myeloma Matters, please contact us at contact@myeloma.ca.
 
To all of you who have shared your stories in the past, and those of you who continue to do so today, we are indebted...you are an inspiration.  
I am my husband’s caregiver! I am his strength, his courage and his hope…
It all started with Catalino napping for too long after work, missing workouts and complaining of a nagging pain in his shoulder. This was seven (7) months prior to hearing the dreaded “C” word diagnosis. We both thought at first that it was just the result of doing too much power yoga where inversions (like headstands, handstands, and shoulder stands) were common practices.
The late Kristopher was my strength during
those trying times
In February 2018, after undergoing blood work, x-rays, scans and MRI, we learned Catalino (we call him Cat) had some type of cancer. I remember our doctor telling me this, “Jojie, your husband has Bone Cancer!” We were in our utmost disbelief; I was shocked to my core, and I felt like I just got hit by a moving semi-trailer. My world crashed! We called and informed our grown kids, our siblings, and a few close friends.

I knew way back then, I will need help, so I enlisted the help offered by Cat’s sister Chuchay, my brother’s wife Irma and of course our son Kristofer. “I can do anything for my husband, but I can’t do everything”.
That first weekend in March 2018, right after his nuclear bone scan, we got confirmation that Cat had multiple myeloma not bone cancer. I got a phone call from the on-call oncologist at Vancouver General Hospital (VGH) advising me to admit Catalino to the ER that night to start treatment, otherwise he would not be able to walk for the rest of his life. I told him, “My husband doesn’t want to go to any ER and wait for hours”. We had already been to the Richmond General Hospital that afternoon for a scan; we were advised by our family doctor to admit him there and they would transfer him to VGH later.

Cat refused when we were told the wait could be 4 hours at minimum, he would rather be at home in his own bed. At that time, he could not stand up, let alone walk; Cat was in a wheelchair. I no longer had the energy to argue with him, so I ended up calling 911 to transport him to VGH.
We waited 5 long hours; Cat was in a stretcher in the hospital’s hallway just outside the ER. I left when they finally got him a room at 2am. I was extremely tired (physically and mentally) and was totally disoriented. I needed fresh air and time to think, so I walked along West Broadway heading from West 12th to Burrard & West 7th (where home is) in the wee hours of the morning.

Catalino is 13 years older than I, and he always calls me, “my Cheech”. He used to tell me, “I will outlive you; I will be here to take care of you”, but in a blink of an eye, our lifestyle and priorities changed: now, it was to deal with my husband’s life of treating his myeloma and planning a life for the future with this disease.

There was a reversal of roles here, I am now going to be his caregiver.
Good days and not so good days
I only had a few hours of sleep. I had to be back at the VGH to meet up with Cat’s team of doctors. That’s when we found out that Cat had a tumor that took up 50% of the space in his spine around the L4 area. This is what was causing the excruciating pain in his lower back.

Cat would need radiation for the tumor. That radiation caused his vertebrae to collapse a few months after. He had renal failure and was admitted back to the VGH for 12 days. I took time off work so I could be with him and not miss anything; I would give him a shower a half hour before visiting hour was over at 11pm. I just wanted to be with him. I would go back home, have a light sleep, “then rise, then grind” again.
There were mornings when my son Kristofer would drop by the hospital and bring Cat his dark roast Starbucks coffee before heading to work while I got caught up with house chores and/or hit the bookstores and library looking for reading materials on multiple myeloma. Nobody in our family had ever heard of this type of cancer.

We were told that Cat would need months of what they called “first line of treatment” which was CyBorD (cyclophosphamide, bortezomib and dexamethasone) before a stem cell transplant (SCT) could be performed, if he qualified.

Cat’s oncologist also informed us that multiple myeloma was not curable. I was afraid of the unknown, of this frightening myeloma journey, of death, but I kept on thinking if “we can make it through this, we can make it through anything”. I just needed to be well-informed on his cancer.
Those days and months of going back and forth to the VGH for Cat’s treatment were physically draining. Cat’s side effects from the dexamethasone (“dex”), were something else. I would wake up at 3 o'clock in the morning only to find my husband doing a major cleanup (he literally turned his office upside down!); the short temper and mood changes were emotionally draining at times, but I kept my cool.

I found a quote that said it’s not just the patient that suffers, but caregivers too.

We caregivers are on an emotional roller-coaster ride. As our loved ones are riding theirs, we are riding our own, and we are straddling them both. As we are aiding our loved ones in their journey, we are navigating the ups and downs, twists and turns of our own.
Catalino and me
Cat and I have been so fortunate. Cat’s overall response to the 5.5 months of CyBorD and the stem cell transplant have been good. His blood counts are almost normal, neutrophils are normal, kidneys are okay…his numbers are all good.
He achieved a “complete response” (CR) months after his SCT and in January 2020, myeloma cells were undetectable! With no new lesions and no new bone fractures, Cat’s oncologist took him off Revlimid (his maintenance) last January. Cat’s back pain also disappeared right after he underwent a vertebroplasty at the beginning of his treatments, a procedure where they inject a bone cement into his collapsed vertebrae. Since then, Cat has stopped taking pain meds as well.
I worked in the service industry all my life and have been exposed to different kinds of people from all walks of life. This has made me outgoing, patient, accommodating, bold, fearless, confident, and strong; this helped me tremendously not only in my career but as Cat’s caregiver; it also enabled me to continue living after the death of my son Kristofer. You pick up the pieces and move on. But, nothing prepared me for when we first learned Cat had myeloma, or for the first time I saw shock, confusion, fear and anger on my husband’s face. After the initial shock wore off, I knew I needed to be an encourager to Cat though I was very scared and tried not to show it.

There were so many times I cried while taking a shower. Joining support groups for people that are living with multiple myeloma helped me a lot to keep moving forward. I gained important information and got valuable advice from their experiences.
Looking back to 2018, I was thinking that if I have “my something” that keeps me going, it will be my sanity and having hope.
Before Covid, we drove from Vancouver to Saskatchewan
to see Hazel & Garth Schierling, good friends we made through Myeloma Canada’s support groups.
Hazel and I are both caregivers to our husbands.
I found out about Myeloma Canada in a flier advertising the Myeloma Canada National Patient Conference in Richmond BC in May 2018; I’m glad we attended the conference and joined the Myeloma Canada community; this group has helped us be, and stay, well-informed.

My mottos: “take one day at a time” and “we can, we will”.

Jojie

In loving memory of our dear son Kristofer who was one of the people I could always call to be there for Cat. He gave me strength during those trying and difficult times.
To donate to Myeloma Canada
please visit www.myeloma.ca or call us toll-free at 1-888-798-5771.
Follow us on social media for the most up-to-date information and resources: