June 19, 2008
At approximately 11:00 A.M., I was sitting in my office at our antique shop when the phone rang. It was Tracy, Dr. Moore Sr.’s nurse. She asked me to take Annie to the cancer center at 3:00 P.M. to see Dr. Moore Sr. I instinctively knew that we were in trouble, as the results were supposed to take seven days, but it had only been three days.
I asked her if it was bad news. (What I am going to tell you next is pretty accurate—some conversations one doesn’t forget).
She simply said, “Your wife has multiple myeloma.”
I remember getting very anxious, and with an elevated voice, I asked her, “What is that?” I had never heard of multiple myeloma before.
“It’s cancer of the bone marrow.”
I asked if she was going to be okay. “What’s the prognosis?”
Tracy said in a soft voice, “It could be three or four weeks, maybe a little more,” depending on whether or not she could take treatment and how well she responds to the chemotherapy.
At that point I started crying profusely. I just couldn’t wrap my head around that sort of news.
She kept saying, “Please calm down.”
I was a mess! I kept saying, “What will I tell Annie?” It’s only 11:00 A.M., and her appointment isn’t until 3:00 P.M.
Tracy told me to tell Annie she has a blood disorder and that Dr. Moore Sr. wanted to talk to her about it. Tracy indicated that she had spent two days going over Annie’s medical records, and couldn’t figure out why she was still alive.
Apparently, in her words, I was a very fortunate man to have her this long. What a nightmare! Panic was starting to set in and I didn’t know what to do!
My emotions were so elevated. I sat in my office for a while, then walked around our large antique shop for at least an hour, just trying to focus. The tears were flowing, when it suddenly dawned on me that all the beautiful antiques I was surrounded by were now meaningless.
A lady came in the shop, looked at me, and asked me what was going on.
I told her, and she replied, “Oh my God, I’m so sorry,” and then left.
That was my welcome to the world of cancer.
By 1:00 P.M. I had gotten myself together and called Annie. I told her what Tracy told me to say, which wasn’t completely truthful, but I didn’t have the courage or words to tell her the devastating news. Annie said she would be ready when I got there.
I told her I would pick her up around 2:15 P.M. Of course, I wanted to run to her, but I knew if I did she would put two and two together, then panic would set in. She needed to hear it from her doctor.
Annie was always a lady of many questions, and why she accepted the reason she was going to the cancer center without wanting to know more of what Tracy had to say, will remain a mystery.
Maybe there is some truth in the statement that Annie’s sister Wendy made to her before she was diagnosed with cancer. She said to Annie, I’m sorry, but I’m going to take you through a long dark tunnel. “I have cancer.”
Annie told her not to be silly, and that she didn’t have cancer.
Wendy explained to Annie that when their baby sister Tracy was diagnosed, she spoke of an unusual odor about her. Wendy said that she too could smell a strange odor.
I wondered if it was possible that going to the cancer center triggered Annie’s senses and she could smell an odor too.
Annie never said a word to me about our previous visit, but it certainly seemed at the time she knew something I didn’t.
When we arrived at the cancer center they had a room reserved for us. It was the same room we were in on our previous appointment. We went in, sat in the same chairs, while the nurse took her vital signs.
Shortly thereafter, Dr. Moore Sr. came in, rolled a stool over and sat in front of Annie. I’ll never forget the look of dismay on her face when he gave her the diagnosis.
He told her she had multiple myeloma, and that it was terminal, metastatic, not curable, but treatable. He further stated that multiple myeloma has three stages, and that her cancer was in stage three, with her bone marrow being over eighty percent cancer.
I guess it would be like someone offering you an apple when you were starving; eating eighty percent, then giving you the core.
While Annie was talking to Dr. Moore Sr., there was a knock on the door. When he opened the door, Nurse Lisa, a well-dressed lady, came walking in.
Lisa was the nurse in charge of putting new patients on the clinical trials.
Lisa spoke to Dr. Moore Sr. about the requirements for the clinical trials, and some new changes coming out.
Dr. Moore Sr. seemed a bit agitated when he asked her to go see if Mrs. Harrison would qualify for the clinical trials.
Raising her arm and holding up what I believe was a copy of the current laboratory report, Lisa told the doctor that based on Annie’s HGB being so low, she would not qualify for the clinical trials.
Without hesitation, and a strained look on his face, Dr. Moore Sr. said, “Well then I will transfuse her!”
Lisa simply nodded her head in acknowledgement of the doctor’s words, and left the room scampering down the hallway to her office.
After Lisa left the room, Dr. Moore Sr. explained to Annie that her best hope for survival would most likely come from the clinical trials, potentially using new drugs that weren’t on the market yet.
But it seemed Dr. Moore Sr. was in a bit of a dilemma. Apparently he needed to start chemotherapy right away, but once he started giving Annie chemotherapy, she would no longer be eligible for the initial phase of the clinical trials. He also said that once placed on the clinical trials, most of the treatment for the disease is free.
After his short but to the point conversation with Annie, he excused himself and left the room for a few minutes.
After he left the room, Annie and I just sat there quietly staring at the wall. I tried to reflect on what we had been told, but other than the key points, I don’t remember much of anything that was said during the first half of the appointment. Annie appeared to be in shock, and I knew in her mind her life was spiraling out of control. Her eyes looked so empty and sad as she stared straight ahead at the butterflies on the wall. As I stared at her emptiness, I wasn’t sure what to say to her, but knew I had to say something. I got on my knees, put my hands on her cheeks, looked her in the eyes, and said, “I promise I will love you, take care of you, protect you, and won’t let anyone hurt you.” At that point she lowered her head down to mine, and we simply held each other and wept.
I was sitting beside her holding her hand when Dr. Moore Sr. came back in the room. The first thing he did after looking at Annie and me, without saying a word, was walk over to his desk and get us a tissue. He then rolled his stool back over to us and started revealing his strategy. We had just started talking when Lisa returned.
Lisa told the doctor that the study had been shut down for two weeks, but when it reopens, Annie would be eligible.
He looked straight at Lisa, speaking with a very elevated voice, and hitting the table with his fist he let these words fly; “I don’t have two weeks, I don’t even have two days!”
It was apparent from his frustration and tone in his voice that Annie’s fate had already been sealed. It wasn’t a matter of whether she was going to survive, but rather how long she would survive.
I have a copy of his progress notes dated June 19th, 2008. “I hope to get started by next week on treatment of this unfortunate patient.”
While we were in his office, he noticed that Annie kept rubbing her right hand. He asked her if her hand was hurting.
In a soft voice, she told him “It was very painful.”
He checked her hand and told her she appeared to have carpal tunnel syndrome, which he said was caused by amyloid buildup around the nerves of her hand.
Amyloid is basically malignant plasma cells creating an abundance of abnormal protein that deposits in the body’s tissues. If the deposits reach any of the body’s vital organs, they can block the organ, causing the organ to fail. The kidneys are the most likely target and should be watched carefully. It was just another one of those things we had to worry about.
He picked up the phone and called Dr. Lucas, a specialist on carpal tunnel syndrome, and explained his suspicions to him. Dr. Lucas set us up for a consultation on the 24th of June.
Eventually we started talking about his strategy, which was going to be two different types of chemotherapy. His first choice was IV Velcade, which was a very good drug for the disease, but hard on platelets. That would be administered on Monday and Thursday of each week at the cancer center treatment room via an IV. During that same period, Annie would take melphalan, which was an oral chemotherapy, administered one pill a day for four days in conjunction with Velcade. Melphalan has rather nasty side effects so he decided to give her only one four-day course. He also prescribed pain medications; one 15 milligram extended release morphine tablet every eight hours, and Percocet 7.5/500, one to two tablets every six hours as needed.
Dr. Moore Sr. told us of another chemotherapy drug called Revlimid, which is taken orally. Relatively new on the market, the drug is tightly controlled and very expensive. I guess it was the gold standard drug for multiple myeloma, and was used in some of the clinical trial patients in combination with other drugs. It was a cleaner drug, and the side effects weren’t as bad as those of the other drugs. At the time there were only a few pharmacies in the country that carried it.
After a lengthy discussion with Annie about the drug, he looked at me and said, “I doubt your insurance will cover it.”
I immediately saw a worried look come over Annie’s face. I told her not to worry, when we eventually ran out of money, we would refinance our home and get more. This was so typical of cancer, as treatment is very expensive. Sadly, I knew this wasn’t going to be a long-term illness as Annie was too sick.
Dr. Moore Sr. asked me to accompany him down the hallway so we could check on my insurance coverage.
As I walked, it occurred to me that this would have been a very difficult visit for Annie without me, for many reasons. At the moment Annie was just trying to come to terms with her emotions, and answering questions about our insurance coverage was not something she needed to be concerned about. Her plate was full! When the doctor and I walked out of the room, she was just sitting in her chair staring at the colorful butterflies. Her eyes looked so empty, I’m sure she was looking through the butterflies into the unknown, as it would be hard to see the beauty in anything when surrounded by so much darkness.
The big question, the one I instinctively knew seals many cancer patient’s fate, and always comes right after the diagnosis, was now coming to visit Annie and me; “What sort of insurance coverage do you have?”
I knew I had heard that question before outside the world of cancer, but at the time it was meaningless to me. Now I was feeling the panic and the worry of not knowing how good, or how bad, our insurance coverage was. One way or the other, the answer to the question would potentially give her more time, or her journey would be over very quickly.
Dr. Moore Sr. guided me over to one of his secretaries, and had her send a request to TriWest seeking approval for the Revlimid. To our surprise the drug was approved immediately. It was a “high-five” moment.
I’m a veteran with twenty-four years of military service, and was told when I enlisted that I would have health care for the rest of my life if I served my country over twenty years. That also included my spouse, and children until they became adults. It appeared that the promise made to me all those years ago was being kept.
Dr. Moore Sr. gave me a big smile and guided me to his office, sat me down, and thanked me for serving my country. I guess he just wanted to do that in private.
He said, “Bob, I wish everybody had insurance like yours, we could help so many more people.”
Dr. Moore Sr.’s statement was very moving to me, as he said it with such strong conviction towards helping others.
He asked me some questions about Annie’s medical history, and then walked me back to her room.
When we walked into the room with smiles on our faces, she was just sitting in her chair, still staring at the butterflies. As her head turned our way I knew immediately from her body language, as our faces came into focus, that she sensed the good news.
Dr. Moore Sr. looked straight into her eyes and told her the drug had been approved, and in her case offered the best possible chance of getting some sort of remission.
Annie’s response to the good news was a beautiful smile that seemed to light up her face. I desperately wanted this moment for her, and it was wonderful seeing her smile.
He explained to me that Annie was very fortunate, as the sad truth is, when a person gets the initial cancer diagnosis many insurance plans will only approve the cheaper chemotherapy drugs. If the cancer doesn’t respond to the low end drugs, depending on the type of insurance coverage one has, they may be elevated up a level to the next drug. By the time the patient is elevated to a drug that gets a response to the cancer, it’s sometimes too late for a cure or extended survival.
As we were getting ready to leave the room, I glanced at Dr. Moore Sr. who was still sitting on the stool with his head down, appearing to be deep in thought. I heard him mumble some words under his breath: “God help us if she can’t take Velcade.” When he looked up, he saw me staring at him with inquisitive eyes. He said, “It’s nothing Bob, I was just mumbling under my breath.”
I got his message!
June 20, 2008
As today was a Saturday, I was surprised that we had several appointments at the Wichita Clinic. Once we arrived at the clinic and checked in, Annie was taken back to radiology by a nurse. She was having a metastatic skeletal survey to find other areas where the cancer was located. They essentially X-rayed her entire body.
When the technician returned Annie to me, she had a concerned look on her face when she asked me, “Does the doctor know about this?”
For an instant I was stunned. I looked at her and said, “Know about what?” It was as if for that split second, I had forgotten that she had cancer. I quickly gathered my thoughts and told her he knew, but apparently was looking for the various locations.
That sort of set off more alarm bells in my head, as technicians don’t usually comment on X-rays.
In addition, while at the clinic they drew nine or ten vials of blood for analysis, and did an EKG to check her heart function. Her kidneys and liver functions were screened as well.
It was obvious to me after all the testing on Saturday that Annie and I were in this way over our heads. What was most troubling to me was not understanding the disease, and the fear of the unknown.
From Annie’s lack of communication with the healthcare professionals, I think she was just trying to come to terms with her illness. She wanted me to take charge of her chaotic life for now, which was my promise to her; and one I intended to keep.
June 23, 2008
I called Dr. Moore Sr. and told him how much pain Annie was in. She was suffering from severe pain in her bones.
He said he wasn’t surprised as he has seen the skeletal survey, and decided to up her dosage of extended release morphine tablets. She would now be getting two 15 milligram tablets every eight hours.
The pain in Annie’s hand was a real problem and a constant reminder of the uncertainty of the new journey she was on. At times she would stand behind one of our dining room chairs, sedated from the drugs, using her good hand to hold onto one of the chairs for stability, while continuously shaking her other hand as if trying to shake the pain away. Sometimes that would go on for over an hour and be repeated throughout the day and even into the night. I was always standing beside her, or behind her, giving her additional support as she would literally fall asleep while standing. She was so tired, but due to the relentless pain, going to bed was not an option at times. We were both very tired, but managing as best we could.
June 24, 2008
I took Annie over to see Dr. Lucas, who took some X-rays and spoke with her about the surgery. Annie wanted the surgery as soon as he could do it, as she would have rather lost her hand than fight that sort of pain. Her surgery was scheduled for the 7th of July, which I felt was too long of a wait, but apparently until all her test results were in there would be no surgery.
Annie was starting to get tired and the fatigue factor from all the pain, stress, medications, and her worsening condition was starting to set in. But we couldn’t afford to look back, as we weren’t going that way. Our only choice was to keep pushing forward.
June 30, 2008: Today we met with Dr. Moore Sr. at the cancer center in regards to Annie’s skeletal survey. Having a reputation of being a no-nonsense type of person, Dr. Moore Sr. laid everything on the table.
He told us her X-rays showed she had bilateral fractures in both femurs from the disease. Also, she had multiple myeloma in her skull, spine, hips, and ribs. Her skull was peppered with multiple myeloma lesions, but her kidneys and other vital organs were functioning adequately.
At that time, the possibility of using radiation therapy in the future was discussed. That would possibly destroy the tumors in her hips, but also adversely affect her blood counts. He set her first chemotherapy date for July 7th, 2008.
It seemed reasonable to me that if you were just told you had bilateral fractures of both femurs you would find the nearest chair and sit down. Annie wasn’t like that! When we left the cancer center she walked very slowly, with me by her side. I understood her decision of not wanting to get into a wheelchair, as in her mind it would reinforce the fact that she was now slipping further down the slippery slope she was on. I really didn’t want her to walk on fractured femurs, and I told her I didn’t think it was a good idea, but loving her the way I did, well, I guess it just got in the way.
Dr. Moore Sr. would like to have started the chemotherapy earlier, but her condition was such that he had to wait until all her vital organs were checked for damage from the cancer. Sometimes cancer is diagnosed at such a late stage, there is nothing they can do. His window of opportunity was very small, but he was jumping through it. Annie’s treatment, once started, would be difficult for her to tolerate and very aggressive; but would offer her the only hope of any length of survival.
Dr. Moore Sr. had the Revlimid ordered that day, but the pharmacy couldn’t ship until they were able to talk to me. I called the company later that day and verified all of the information. I had to talk to three different folks to get it ordered. It would be delivered by FedEx to my doorstep, and I had to be there to receive it. It was still going to be a couple of weeks before they could ship.
Even though Annie wasn’t a believer, she was on many prayer chains. She was in a battle for her life, and she knew it. We both humbly accepted anyone and anything that might give her an edge.
At this point in her illness, Annie was dealing with her elevated emotions, and I believe, starting to grieve. It was very painful watching her, knowing that any logical conclusion would indicate that her condition was only going to get worse.