San Bernardino, CA
1942 / Class of 2003 / Type: IgG / Recovery, lytic lesions/ SCT / Died 4-13-07
Dad’s Story: A story of Hope, a story of Living (From his daughter, Jennifer: firstname.lastname@example.org)
In late February 2003 it began with a backache. By late March 2003 the backache had begun to cause so much pain, getting up and down from a sitting position, getting out of bed and playing with the grandchildren, was to difficult to do without assistance. In late April 2003, extreme back, chest and rib pain, significant weight loss (25+ pounds), and a fast growing hump on Dad’s back made the diagnosis of a pulled muscle as a result of chopping wood, unbelievable.
My Dad was only 60 years old at the time and was very healthy and active. He is a nature and history lover spending his free time camping and hiking, reading, watching old history/war movies and listening to the music’s of the world. He had never been ill before… just one time about 25 years ago when he was hospitalized for a “fever of unknown origin”. He had three careers up until this point- the latest as a high school geography teacher, which he loved and gave 200% too even up to the day before he was hospitalized.
It took some major pushing I have to warn, to get his doctor to look at my Dad’s symptoms as anything more than a pulled muscle or possibly a bulging disk. Even after x-rays in late May, the doc said he just had a terrible case of osteoporosis. He had Dad admitted to the hospital over night for testing though, as it had become just too difficult and painful for him to travel- even across town. His breathing had become slightly labored and he had severe constipation that was leaving him bloated beyond any 7-course meal.
After his initial admission for testing, my Dad wasn’t released from the hospital to the rehab center for 8 long weeks. In the course of the 8 weeks, we almost lost Dad to acute pneumonia (due to aspiration after failed attempts to relieve his constipation), a staph infection in his blood, renal failure, a tear in his large intestine and Dad’s body rejecting the mass of tubes that seemed to go into every opening of his body. It was confirmed for us in the first week of his stay in ICU that he had MM and because it had progressed so long without treatment, he was too far-gone to recover. We were asked if we wanted to resuscitate him if/when he stopped breathing again and what were his wishes, did he have a will etc. It was the most devastating experience of my life as well as in the life of my brother and mother and it was all happening just to fast. 2-3 months before he was picking up my nephew and swinging him around in the back yard and making all of the campground reservations for the summer…
I decided to dive in to this disease with everything I had and I began to research, research, research! I asked questions of all the doctor’s caring for my Dad and contacted the local support group in my area. The IMF website became a constant source of information and hope and ever day I made the 3 hour round trip after work to my Dad so I could talk to him and tell him about all of the new medicines and treatments for this cancer. Although he was under a neuromuscular block and wasn’t able to respond, I felt that he could hear me and I didn’t want him to give up.
We were told that Dad was in stage 3 of MM and that he had 2-3 lytic lesions on his spine and chest. The hump on his back was caused by 5 collapsed vertebras in the thoracic area as well as having a bulging disc in the lower back. We weren’t given much hope in the way of getting him through this to receive treatment for MM as the doctors felt his test results showed the disease had progressed beyond any significant help that treatment could provide. Dad has IgG and the chromosome 13 deletion was made both of which gave me more hope and after 2-4 day cycles of Dexamethasone, his IgG level had gone from an 8 at admitting, to a 4. His white blood cell count which had remained at a fairly constant 7-8,000 at the peak of his sickness, was responding to a couple of minor infection he had picked up in the hospital (rising to 18,000 at one point). His red blood cell count went up to 12,000 on its own after 5 previous blood transfusions failed to bring it above 9,500.
8 weeks after being admitted to ICU, Dad was healthy enough to be sent to a rehabilitation/health care facility with only a feeding tube. Once at rehab, there was a week that was pretty bumpy that left him with aspirated pneumonia… again (it was caught much quicker this time and therefore wasn’t as severe). He was exhausted and slept all of the time and was nothing but skin and bones. His normally healthy 6’2, 200 pound frame had been broken down to a 5’8, 131 pound frame but the kids that he had taught the year before, the teachers he worked with, neighbors, numerous life-long friends and our huge family, gathered around him daily, filled his room with posters and cards, prayed for him and with him and fed him the hope of life-living-with MM.
My Dad has been in the rehab/health care facility for 3 weeks now. He gained 10 pounds in the first 2 weeks of being there and he has started his second round of Dexamethasone treatments. The oncologist has skipped giving him Aredia this month as his calcium level is to low to warrant it. Currently his blood tests are coming back “within normal limits” and although he still has a feeding tube that has made him unable to take thalidomide yet, he is still working hard on reaching that goal. The stoma is almost closed now and he is able to exercise his throat more effectively which we hope will allow his epiglottis to work properly again.
The rehab and Dad’s doctor’s had planned on him being in rehab for approximately 2 months and then going home as an invalid basically but 3 weeks after arriving there, he is no longer eligible for skilled care nursing because he has regained the ability/ strength to do everything on his own again! He walks, dresses, bathes, uses the restroom, and gets in/out of the car-- all without assistance! He doesn’t sleep near as much anymore either and has order his books for the fall school year (yes, he plans on teaching in Sept.).
Dad and I have faith that he will win this battle and battles that will come in the future- I’m sure there will be many- and that with each battle, he will become stronger and that there will someday be a cure for MM. (“For when your faith is tested, your endurance has a chance to grow.” James 1:3 NIV) As numerous doctors have told us, Dad is a walking MIRACLE and he is proof that there is hope in the Myeloma battle front lines.
March 2004: Don’t ever, ever give up because miracles still do happen every day!
How time flies! It is hard to believe that it has been nearly 7 months since I first wrote of my Dad’s battle with MM. I am thrilled, however that I am able to bring up to date not only our story of Hope and Living but also of miracles and faith!
I won’t sugar-coat this update -- the past 7 months have been strenuous, frustrating, exhausting, and have on a few occasions, has looked grim. Through all of that however, there has always been a bright side… the cup was always half full rather than half empty and this is what has helped keep us all sane!
My Mom would now qualify as an RN and I a research specialist (see, even new career possibilities can rise from difficult times such as this!). My Mom has seen my Dad inside and out - literally - which is way more than she bargained for, but she became, and has been, a constant and steady source of patience, love, strength and knowledge… And I’m happy being a cheerleader!
Here are just a few highlights from the past several months:
September 2003: Dad comes home from the rehabilitation and health care facility
October 2003: Dad goes to City of Hope consultation, has a very long way to go, but a transplant is possible. Very promising!
A successful surgery to insert a feeding tube directly into the stomach - Yeah! No more tubes in the nose. (This was a great day!)
Dad comes home from ICU stay after intestinal rupture...
Home again after falling down - MIRACLE: NO INJURIES - while attempting to walk without assistance.
Dad comes home, again, from another ICU stay.
Thalidomide/Dex therapy has begun at home via the feeding tube.
November 2003: Home again from 2 separate ICU admissions.
Recovers nicely from bouts of vomiting, severe fatigue etc.
December 2003: Admitted, released and home again (this scenario became a bi-weekly event which I planned for.)
Makes it to emergency surgery (10:00 p.m.) on Christmas Eve before a tennis ball-size pocket of infection in his lower abdomen ruptures into the abdominal cavity.
Makes it through the surgery with only an epidural! and no complications (only he doesn’t have a belly button anymore!) He was cut from sternum to pelvis and hip to hip- major surgery. The surgeon says he has 9 lives and has used 3 of them so far. Also say’s that my Dad “writes his own book” (meaning he doesn’t do anything the way the medical text books say he should. He is so difficult!). Everyone is thrilled and amazed.
Blood work after 2 months on Dex/Thalidomide treatment is looking good; M-protein is at 0.79 after an original reading of 8.75
January 2004: Happy New Year! Admitted, released 5 days later, and home again with a fistula in the horizontal incision.
Miracle # 9,282: ALL blood work is looking normal- awesome! Only 3 months of treatment and there is no traceable M-protein, IgG is 900!
Trades in the walker for a cane - walks alone.
Miracle # 9,284: Passes the swallow test! Comes home and eats real food, through his mouth, for the first time in 8 months.
Walks upstairs and takes a shower for the 2nd time in 8 months (we were all pleased!)
Went to see transplant Doctor. Gain some weight, get that incision healed up and transplant here we come!
February 2004: Very little to no pain anymore. Has come down to 50 mg. on the Duragesic patches (he was on 150 mg).
Goes shopping! Drives again, has gained about 10 pounds, managed to bypass all of the “bugs” flying around (flu strains, colds etc.), and the makeshift bedroom that has occupied the living room, is disassembled and Dad moved upstairs to his old bedroom again.
Mar. ’04 Dad writes a letter to the school district notifying them that he will be back teaching his geography class in the fall.
The stem cell transplant is supposed to take place in April and by then my Dad should be more than strong enough to withstand it. He is definitely returning to his old “feisty” self (which I used to think was a BAD thing!!) but for which I am so grateful for now. The Doctors can’t explain many of the recoveries Dad has made - they say no one else would have made it and he, especially, shouldn’t have.
I don’t want to mislead anyone with all of the miraculous updates I’ve given above and so I would like to stress again just how difficult the last 8 months have been - a living nightmare even. There were numerous times when my Dad, and Mom, felt hopeless, helpless and couldn’t see the light at the end of the tunnel. There have been more times than I can count that the tears of frustration, anger and fear just wouldn’t stop coming and there were at least 3 times when my Dad had, for all intents and purposes, lost his battle on an Emergency Room table. I’ve known, and stuck to, the knowledge that God has a bigger plan for my Dad and this has been my personal saving grace.
On a final note, I’d like to say that over the past 7 months, I have had the privilege of meeting and communicating with some of the most knowledgeable, caring and brave people I’ve ever met. I have received over 100 emails from people offering support, prayers, and information and sometimes even seeking information and support for me. I can’t express my gratitude and my emotions overwhelm me, but I want to thank you all.
January 25, 2005: Almost one more year is under the bridge… but it has been a relatively good year for our family.
The stem cell transplant was done in late July 2004, just a couple of months after suffering a minor heart attack. Dad said the whole procedure wasn’t all that bad; he was expecting worse. The time spent alone in an isolation room at City of Hope was probably the worst although the morning vomiting ritual wasn’t all that pleasant either. Losing the hair was almost comedy and he looked great—what a perfectly round head! There were no infections or complications relating to the transplant and he was ready to go home within 2 weeks of the initial admission.
His strength has returned, although not at the same level as before he was diagnosed, and he has become completely independent again. He was forced to retire from teaching and he tires from prolonged periods of standing and has some difficulty with his memory. Some days he’s able to go without a nap, but he likes those (naps) and always has.
His m-protein count was down to .3 in September (no meds) however at the monthly check-up 2 weeks ago we learned that the count has jumped up to .86. He is now taking 100 mg of Thalidomide daily as well as receiving the Aredia monthly. He’ll be checked again in 2 weeks and if the count has risen again, we will seek the mini- allo transplant. All of the other blood work has been coming back normal and he is feeling great and is very active- in smaller ways.
He had the g-peg (feeding tube) taken out 2 weeks ago and as been completely dependant on eating from the good ol’ fork and spoon for about 3 months now. He has actually gained weight, now weighing in at 150 lbs. We’ll be looking for a bone scan soon (last one was done around May ’03) so we can take a look at the lytic lesions which he has from head to toe. The vast number of lesions he has is a complete contradiction to what we were told originally and the largest lesions are on his skull and left forearm. Smaller ones do canvas all of the bones… He still relies on the duragesic patches for pain although there are no back supports, braces etc.
Since he had the intestinal surgeries last year, there has been no more of the constipation, vomiting, infections etc. It seemed that Diverticulosis was the cause of those horrific intestinal issues/illnesses and symptoms he’d had for almost 6 years prior and that had become pronounced again during the first year of MM. None of that was caused by or because of MM.
My parents have both attended the local support group meeting and enjoyed it thoroughly and intend on attending regularly. They have sold their large home and enjoy their time in a condo 1 block from the beach and are drafting up a traveling schedule to “see all that they can see” together before that opportunity is gone. Oregon, New Mexico, the Grand Canyon, motor homes etc… maybe even Europe! Right now the sky is the limit- an absolute miracle from the Lord above- for someone who if they lived another day, wouldn’t have any quality of life.
Luke 17:6 “ He replied, “If you have faith as small as a mustard seed, you can say to this mulberry tree, ‘Be uprooted and planted in the sea,’ and it will obey you.”
My father, Robert Heeren, passed away from MM on Friday, April 13, 2007.
My dad fought the battle of a lifetime with dignity and endurance. Before his passing, he and my mom did some traveling as hoped and enjoyed each other's company as well as the company of our family. Although dad was often "under the weather", he made it to my son's football games every time it was a home game. He would come and sometimes fall asleep in his chair while watching but at the end of the game, would proudly meet Nick on the field for pictures. He was selfless and didn't want to miss a thing no matter how bad he felt.
My brother and I had the privilege of taking care of my dad the last 2 days of his life, tending to all his needs. Gently wiping the sweat from his forehead, reading to him, reminding him of the impact he had on our lives and others… reminding him of all the fun we had with him throughout our lives. He is a treasure whom I think about nearly every single day.
All of my thoughts and prayer are with those fighting MM and those who are supporting people with MM.
God Bless, Jennifer
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