Cancer Caregivers

Coping With Cancer as a Family

The following is a guest post from Kathryn, caregiver and advocate.

 

Five years. Five years can seem like a flash in the pan, or it can feel like an eternity. Strangely, it is both of those for us. This story began five years ago.

At age 69, my husband, Jun, noticed some health changes. Uncommon fatigue, deep swelling in his legs and feet, tingling and numbness in his hands, shortness of breath, and foamy urine (which he knew could indicate the presence of protein)—all these had been creeping up on him. His background as a physician told him something was seriously wrong.

And he was right.

Working together, his doctors searched for a cause for the kidney failure and his other symptoms. Many people his age can point to diabetes or hypertension, but he did not have either of these.

At this point, some patients are told to watch and wait. But luckily, Jun’s doctors pushed for an answer. With acumen and determination, they explored the other possibilities. Within days, he underwent a bone marrow biopsy, which ruled out multiple myeloma, and then a kidney biopsy was sent to a special lab, which confirmed the doctors’ suspicions.

Jun was diagnosed with a rare, incurable bone marrow disease called amyloidosis. Amyloidosis is not exactly cancer, but it might as well be. It is just as serious and is treated similarly to cancer and, like cancer; its prognosis depends on the stage and type of amyloidosis.

In amyloidosis, the bone marrow produces excess proteins called “light chains,” and these proteins are misfolded into fibrils the body cannot break down. During those days, I began to imagine the grotesque, twisted shape of light chains on wall decor, drapery fabric, and everywhere I looked. The misbehaving proteins are circulating in the bloodstream in great numbers and are being deposited in all the organs and tissues of the body, causing damage in all the organs of the body. The symptoms are widespread and seemingly unrelated, and the disease is so rare that diagnosis is often not reached until much too late.

Each patient with amyloidosis presents differently—some with cardiac symptoms, some kidney, some intestinal—so that a timely diagnosis of this rare disease is challenging. (A grateful shout-out to Jun’s local medical providers—primary, nephrology, and oncology—for recognizing the disease quickly!)

On the cusp of his retirement from the practice of medicine as a urologist, Jun underwent an autologous stem cell transplant, using his own cells, followed by courses of chemotherapy with remissions between. He is currently on chemotherapy and tolerating it as well as expected.

 

We took another punch—this one much more brutal than the first.

Within a year of her dad’s diagnosis, our daughter, Tracy, became concerned about her health. She had the exact same symptoms as her father! Initially, she thought her fatigue had to do with nearing 40 years of age. Soon, she had even greater, faster swelling in her legs and more protein spilling into her urine than her dad. What was going on here?

Our amyloidosis specialists were confounded. There is a familial type of amyloidosis, but genetic studies confirmed they didn’t have it! I remember the doctor telling us that she spoke to the walls of her office saying, “Tracy does not have amyloidosis! She does not have amyloidosis!”

But, yes, Tracy does.

Tracy at her ER residency graduation

Tracy with her parents at her ER residency graduation

Father and daughter. They each have light-chain (AL) amyloidosis, which is nearly unheard of in first-degree relatives.

Crushing. Absolutely crushing. I remember remarking to Jun that, in a weird way, he might have saved our daughter’s life. Her symptoms were increasing at a frightening rate, day by day. We were already established and familiar with the doctors, nurses, and staff at the amyloid center of excellence clinic, so they ordered some tests and had her come in for an evaluation within a very short time. Prior to this, Tracy had learned all about her dad’s disease, been with him at the amyloid specialty clinic, and met his doctors.

If not for Jun’s experience, the lead time to a referral and evaluation might have taken weeks or months. They say time is money, but sometimes time is life! And health. Tracy’s amyloidosis diagnosis was confirmed immediately by bone marrow biopsy, and a treatment plan was started on the spot. She also had an autologous stem cell transplant, which resulted in a very good remission. She returned to her joyful personal and professional life, but with a dark cloud named amyloidosis hanging nearby.

Two years passed and we had settled into a kind of acceptance and peace. We engaged in a bit of friendly family competition or, some might say, dark humor. There were “light chain wars” to see whose were lower. At one point, Tracy was jealous of her dad’s serum albumin level (which indicates kidney damage). Hey, we could make a board game out of this! Oh, the things we did to survive!

 

Little did we know what was to come.

Tracy was going about her usual activities, working at her local hospital as an emergency room physician and caring for her family, when she began to experience back pain. She and her husband were afraid to speak of it out loud, and when she called to tell us, I could hear the worry in her voice. Her back pain was not the aching kind of pain, as if you strained your muscles. The pain was increasing rapidly and was most pronounced on one particular bony prominence on her spine, which was especially painful to the touch. The pain itself was not incapacitating, but the fear of what it might represent was.

Tracy notified her doctors, who echoed the concern. At the time, she was being monitored carefully by her amyloidosis doctors, so it was shocking to see the results of the tests that followed: Tumors were present in many of her bones. Now, she had multiple myeloma, an aggressive blood cancer!

Amyloidosis and multiple myeloma are cousins. They both arise from the plasma cells, and some patients do have both diseases at once. Usually, a patient will have myeloma first and amyloidosis after, but for us, the tables were turned. Again.

Tracy’s treatment plan called for an allogeneic, or donor, stem cell transplant. Her doctors felt that her own plasma cells were too unstable and faulty to be used again. It would be futile. A stem cell donor would need to be found. The search started with siblings.

Each human cell has human leukocyte antigens (HLAs) on its surface. A perfect match between the patient and the donor is 8/8 HLAs, whereas a 7/8 match might be acceptable. Even though the bone marrow of family members matches only about 25 percent of the time, we were certain one of Tracy’s siblings would be a match.

The cancer center transplant department sent us testing kits. Our kids anxiously followed the instructions about how to swab the insides of their mouths. They were already thinking through their schedules and planning ahead to the day they could have the honor of giving their sister a second chance at life. One of Tracy’s brothers, who has disabilities and medical challenges, would go to the ends of the earth if he could for Tracy or anyone else. We lovingly call him “Mr. Christmas,” and he more than makes up for his inability to be a donor with hugs and kisses. Likewise, Tracy’s other brother and her sister would do anything for her. They were distraught when they did not match closely enough to donate. It was heartbreaking for the whole family.

Imagine this: Your sister is drowning or in an accident and you stand by, unable to rescue her. All of us felt that defeated the day we received the test results.

Tracy at 17, with her family

Tracy at 17, with her family

The transplant team at her local cancer center turned to the National Marrow Donor Program. Not one person out of the 13 million in the registry was a match for our precious daughter. Can we ever get a break?

You see, Jun is of Filipino ancestry, and I have Irish and German lineage. We met in 1968 at my home hospital, where I was a new graduate nurse and he had arrived in the U.S. from his homeland of the Philippines for medical training as an intern. This summer, we celebrated our 46th wedding anniversary! Our children are a complex combination of Asian and European heritage with dashes of who-knows-what thrown in for good measure.

Sadly, we learned there is an extreme shortage of minority and mixed-race donors in the registry. Be The Match, Asian American Donor Program, and several other agencies actively recruit and educate minority populations, encouraging them to join the National Bone Marrow Registry and stand ready to save a life. Our family has undertaken an extensive campaign of two years to grow and diversify the registry for Tracy and the many patients who wait prayerfully for matches.

Our critical need right now is a match for Tracy. While waiting for a match, she is on the same type of chemotherapy as her father.

 

You can help.

We have used social media and held numerous live donor recruitment drives all over the country, including in Hawaii, San Francisco, Texas, New Jersey, Chicago, Maine, and Ohio. Friends and family have worked with Be The Match community engagement specialists in their local areas to organize recruitment efforts at universities, hospitals, social functions, and street festivals. People have been tremendously supportive, and a few people who signed up in Tracy’s name have been told they are a match for someone. Though we still have not found Tracy’s marrow mate, it is gratifying to know others might have a chance for life because of our efforts!

People are fearful of the unknown, and marrow donation is no exception. But getting tested is simple. At a drive, anyone age 18–44 can fill out a form and swab the inside of their cheeks. Within a few weeks, their tissue type will be in the registry database, which is scanned by transplant teams for their patients. If there’s no drive in your area, you can find out how to register online and request a testing kit. When somebody joins the registry, it is important for them to understand that they are promising to donate to anyone at any time.

Usually, the actual donation process is performed by peripheral blood stem cell (PBSC) collection. The donor has an IV line in each arm while a machine filters off extra healthy stem cells, which are then given to the patient to reboot their marrow. In the past, marrow had to be taken from the hip bone of the donor, but PBSC collection is most often used today. The routine procedure is virtually painless, other than the poke of an IV line. The donor’s body will fully replace the donated stem cells in a few weeks.

Donating is free. Be The Match will assist the donor in overcoming any barriers, offering transportation, meals, child care, pet-sitting, or whatever it takes. I urge every eligible person to take that first step in saving a life. Become a marrow stem cell donor!

It is quite simple for a donor. Blood cancer is devastating for a patient.

 

holden-beach-21

We’re moving forward as a family.

Five years. So much has happened. Father and daughter. Three incurable diagnoses, two stem cell transplants, chemo upon chemo upon chemo, MRIs, CT scans, ultrasounds, and more. Think of the game Jenga, in which players build a tower with small wooden blocks and then try to remove lower blocks, one at a time, until the whole thing comes crashing down. Our experience feels like that. But we have come out intact spiritually, emotionally, and as a family.

You could say we have had to reimagine our lives. My husband and I have had to adjust our vision of retirement to include this stranger called amyloidosis. Jun is a trooper and continues on with a few hobbies and as active a social life as he can tolerate.

When I look at photos of Tracy, I see ”before” or ”after” by the length of her hair. Long silky hair before and a sassy, youthful short style after it grew back. I remember clearly the day she called to tell us that the multiple myeloma diagnosis was confirmed. She was so apologetic. “Mom and Dad, I am so sorry,” she said.

It saddened her deeply to see the anguish on the faces of her husband, children, parents, and siblings. She had only worked three years at her chosen profession as an ER doctor when first becoming sick at age 40, and it has been difficult for her to give up the work she loved so much. Her bombarded immune system can no longer protect her from the clinical setting of the ER. Continuous chemotherapy, bone tumors, a weakened immune system—all these cannot keep her from her kids’ school activities, hiking, working out, knitting, cooking, and more. What a strong woman she is and always will be.

Acceptance, patience, humor. Yes, I have learned plenty. I told our kids that if I start crying, I will cry for 100 years. If they see as much as a teardrop, they say, “Look out, here comes mom’s 100 years.” I have learned to accept the bad days and revel in the good. And there are plenty of good.

For five years, it seems that a cascade of bad luck has stalked us, but blessings and good luck have been right there all along. We have had compassionate care from world-class doctors, nurses, researchers, and pharmacy providers. That, plus our faith in God and the love and strength of family and friends, has carried us through.

 


 

For more information on amyloidosis, multiple myeloma, or how you can help, check out these resources:

 

Amyloidosis Foundation

Blood & Marrow Transplant Information Network

International Myeloma Foundation

National Bone Marrow Transplant Link

 

 

The information herein may not be construed as medical advice. The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. It should not be used as a substitute for professional diagnosis and treatment. It is best to obtain medical recommendations from your physician.

 

The links to other websites are maintained by third parties over whom Diplomat has no control. Such links are provided merely as a convenience to users of this website. Diplomat assumes no responsibility for the content of such websites and makes no representations as to the accuracy or completeness of any information contained on such sites. Diplomat assumes no liability for any damages or injuries of any kind arising from such content or information.

 

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