Terry's story begins with bad luck, good luck, guardian angels and a liquor store. Pretty much the story of our lives, I guess.
Back in late September 2017 Terry was working on one of our rental properties, stretched across some 2x4's in a tight attic space. As he shifted his body he injured his rib on the wooden beam. He continued to work the rest of the day without much enthusiasm or complaint.The tenderness and pain didn't seem to go away as the weeks wore on.At the same time, he mentioned rather nonchalantly that he must have a kidney infection because he felt pain in his kidney and his urine was cloudy. As the weeks wore on, his rib pain moved all around. First up to one shoulder, then his upper back, then to his other shoulder. The pain would move every few days to a new location. It finally became unbearable enough that he agreed in November to see his doctor. We couldn't get an appointment with his primary care doc so he saw the physician's assistant.She asked a few questions, did a cursory physical exam, ordered absolutely no bloodwork and determined that he probably had kidney stones and his sore shoulder may benefit from some physical therapy. She sent him home with a strainer to pee in and instructions to bring the stone back if he caught it in the strainer.
Terry came home frustrated at the waste of time spent as it was obvious that it was not kidney stones or just a sore shoulder muscle. It was nearing Thanksgiving time and he could barely bend over to tie his shoes, and could not roll over in bed. He spent his days sleeping and praying that he wouldn't have to cough or sneeze as his rib and chest pain increased. I called his primary care doctor daily, pleading to get an appointment; to no avail. The soonest that his doctor could see him was Jan 31st, over 6 weeks away! I told the receptionist that he had been a patient for 23 years, only to be snarkily responded with "they've ALL been patients 23 years!" She would add his name to the four page waitlist. I took him to the ER when the pain moved to his sternum and he complained that the cross he wore around his neck was "too heavy" on his chest. They determined that he was not in dire straits with a life threatening ailment or heart condition, however, they did diagnose an elevated calcium level in his blood. They recommended that he see his Primary Care doc the following day. Still the doctor's gatekeepers would not let us in! Instead we were offered another appointment with the same P.A. or a different, random doctor in the same practice. Terry at this point said "Forget it! No more doctors.They can't find anything wrong and I am not going to keep going back." I didn't know what to do. His pain was getting intolerable and he was sleeping more and more. He told me that he was going to be dead before he could see his doctor at the end of January. He was just half kidding. It was the first week of December.
As luck would have it, on Saturday Dec 9th, I found myself by Hazel's Liquor Store in Boulder. I've never been there before but a friend had just told me that the wine I like is always on sale there, so I stopped in. This is where the good luck and guardian angels come in....there in the wine aisle was the elusive Primary Care doctor! I ran over to him and told him he had to see Terry as he was so sick. He was shocked that I was unable to get in to see him (or maybe he was shocked that I was practically clinging onto him with one arm, the other clutching my pinot noir, begging him for his help).He called his office right then to make Terry an appointment.
He ordered all kinds of tests and bloodwork. A few days later the office called and told Terry to pick up lab slip and to go to hospital for some more bloodwork. We went to the ER on Tuesday at noon, got the blood drawn and came home. Terry's routine now was to lie down and sleep for the rest of the day. I turned off the ringers on our phones. At 5pm I saw a number on his phone screen that I didn't recognize. Minutes later my cell phone rang with the same number. The caller said that Terry's primary care doc had made the referral and could we come in at 11am tomorrow am. I wrote down the address and just before I hung up I asked "What kind of doctor are we seeing?" She said "hematologist/oncologist". Stunned, I hung up the phone and cried. The primary care doctor had left us each a message to please call him. He told us that the test today was strongly indicative of Multiple Myeloma and he had referred us to Rocky Mountain Cancer Center.
We arrived at RMCC the next morning in a daze. We were greeted at the front desk with a friendly "Here's your cancer packet let us know if you have questions." Ummm, hold on a second... Cancer?? WTF? We were pointed in the direction of the lab and then onto the waiting room. I could barely see where we were going as the tears silently rolled down my cheeks.We were given a 5 minute explanation of multiple myeloma and the available treatments and then our "assigned" doctor led an unsuspecting Terry to an examining room, and did a bone marrow biopsy right then and there. We had just walked in the door moments earlier; apprehensive, but totally unaware of what was to come. After the biopsy was completed we were instructed to go home and get some things and come right back to be admitted to the hospital for a few days.It was December 20th. We stumbled out of the office wondering what in the world just happened? Our lives forever changed .
Where were the kids? We needed to tell them what's going on. All they knew was that Dad hasn't been feeling well. Lily's high school basketball team was playing basketball at the Pepsi Center; the biggest venue of her life. She was waiting for us to come and watch and would be wondering why is NO ONE in the family is there??? Teke was on his way to DIA to pick up Hannah who was arriving for Christmas, her first trip home in 18 months from Peace Corps in Africa. Janie had just called us in tears and shock that some knucklehead had just ran a stop sign and crashed into her and totaled the beloved "cop car" (she was fine, thanks to our guardian angels!) Our dear friends were loading up their car to drive from Texas to Niwot to spend Christmas with us. And here we were getting admitted to the hospital and starting chemo immediately.
The good news is that the medicine relieved much of his bone pain rather quickly. The cloudy urine was the calcium being leached from his bones which left him with lytic lesions throughout his body. These are holes in his bones, much like fractures that will heal over time. The kidney pain was not kidney stones but kidney damage that was advancing rapidly due to the multiple myeloma. More friends, (aka guardian angels) interceded and put us in contact with Dr. Pat Moran who quickly becameTerry's oncologist. His calm and kind demeanor would guide us successfully through the induction phase of treatment for the next 4 months.
We are now entering the most intense and critical stage of Terry's care thus far. Again , the angels aligned as several doctors and friends referred us to the same Multiple Myeloma specialist in Denver. Dr. Jeff Matous is world renown in the field of Multiple Myeloma. He is affiliated with Colorado Blood Cancer Institute at Presbyterian/St. Luke's Hospital. We didn't even realize that our longtime, close friend actually works for him! Thanks to her and Dr. Moran, we were able to get in to Dr. Matous very quickly and his team spent hours with us at our consult. He listened rather incredulously to our story and reinforced what I believed in my heart. Had Terry waited until his scheduled appointment on January 31st, his diagnosis and course of treatment would be drastically different. His kidney damage and prognosis much more severe. Basically, my need for wine and my spontaneous trip to a new liquor store had in fact saved Terry's life.(True fact: Just ask Dr. Matous!! )
We are beginning the process of an autologous stem cell transplant. We are optimistic as the cancer has responded very well to the 4 chemo cycles that Terry has gone through. His latest bone marrow biopsy did not reveal any cancer cells; termed;"complete response!"The goal of the stem cell transplant is to achieve a deep, and long lasting remission.
On Sunday April 22nd Terry begins a week of outpatient treatment to stimulate and then collect his stem cells. They need to collect upward of 8 million stem cells and freeze them. On May 2nd he will be admitted to Presbyterian/St Lukes for a rigorous course of chemotherapy before getting his the frozen stem cells transplanted. He will remain in the hospital for a few weeks until the cells graft and his immune system is up and running again.
We feel blessed and supported by all our family and friends and ask that you continue to keep us in your prayers! Please feel free to leave a message for Terry. We need all the love and encouragement we can get in these next few weeks.
I am so sad to say as I write this, that Terry's wonderful , sweet mom passed away on April 17th. We know that she will keep watch over us. We will miss her dearly. Angel of God, my Guardian dear, to whom God's love commits me here, ever this day be at my side, to light, to guard, to rule and guide. Amen. xoxox
The mission is remission and he did it! At our 100 day post transplant appointment Dr. Matous reviewed all the results of last week's bone marrow biopsy and blood tests. He happily reported that "his marrow looks fabulous, clean as a whistle!" Honestly, I was not surprised by this news since this was the goal and expectation of the journey. But to actually hear it confirmed and to let it sink in is indescribable. Instantly I sense the shift from living with hesitancy to living with confidence. The silver lining and the gift that a challenge such as cancer provided us has been a blessing, ironically. We have witnessed that faith, family and friends are the only things that truly matter in this life. We have cried, laughed and prayed together. We have held each other and really listened to each other in a way that we never did before. I pray that the lessons we carry forward from this experience continue to stay paramount in our hearts, always reminding us where to keep our focus. I love that on one hand it's made us tougher; but on the other hand it's made us softer and kinder. That's a winning combination in my book!
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