We keep on moving

After the first day of tests -- there were three scheduled all together -- Alan and I returned to our apartment and ate a small dinner. They had inserted a tube in his stomach and he had a pouch of constant chemotherapy dripping into this tube. It wasn't uncomfortable for him at all. Then each morning for those four days we'd return to the clinic and they'd clean out the port and put on another bag of drugs.

After four days, Alan still had no ill effects, i.e., no nausea and no sores in his mouth, and his hair was staying put. That would all soon change.

The next few days were a blur -- we just rushed from one appointment to the next, then sat and waited for our name to be called. I was getting so frustrated. I'm not very patient, and poor Alan was in la-la land most of the time.

We had to be at the cancer clinic every morning at 7:00 a.m. Early for us, but fortunately, on our east coast time clock that would be 8:00 a.m., so it made it a little easier for us to do. Alan was put on a diet and was permitted only canned foods and fresh washed fruits in smoothies. There was a shop near the hospital/clinic that made the specific smoothies recommended for cancer patients on chemo. The point of the chemo was to kill all the cancer cells so they could take his blood, process it, and get out all the stem cells for his transplant. So by the fifth day, he was getting weaker. On the sixth day we met with the doctor who quickly gave us a progress report and said he would answer any questions we had. His name was Dr. Lee. Very nice doctor and we could understand him even though he had an accent.

Questions? Did we have any? No, only a million and a half! I had been to the library and had researched the research on MM and had loads of questions for the doctor. Alan's situation was different since most MM patients are in their late 60s/early 70s when they are diagnosed. Alan was only 55, they kept telling him how young he was.

After researching I found out that MM is not something they look for in blood tests or, in fact, any tests, x-rays, MRIs, etc. So, Alan was fortunate to have had the tumor on his chest that bloomed because of the MM and cancer in his body. Treatment was swift and harsh.

We were released to come back to Cincinnati and told to return in four weeks prepared to stay at least a month.

This is where the not-fun begins!

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We're on our way...

...On our way to Arkansas. What a ride that was, and I don't mean the ride (drive) from Cincinnati to Little Rock. That was the easiest part of the whole trip. We were so excited because we knew that God was in our decision to let the doctors at UAMS (University of Arkansas Medical Sciences) be used of Him to help heal Alan. But that excitement quickly became a full-time job for me and a full-time time of illness worse than ever experienced for Alan. We were blessed in so many ways. We knew hundreds and maybe thousands of people were praying for Alan (the Internet was taking off at that time); we both had a very positive attitude; we knew God was with us (that was never a doubt, never, ever); and we knew that even though the road was rough it would one day be smooth as silk. Those silk worms are still working on that road, but it's almost finished. We arrived in Little Rock late in the afternoon on a Sunday in June, and checked into our hotel. It was a hotel recommended by UAMS and it was wonderful for us because the owners were Christians and their faith was evident in all they said and did; they had free van service to and from UAMS 24/7 which was great because it saved us gas money; and they got us going and commiserated with us when we got back "home." "Home" being the hotel or one of their long-term apartment rentals -- that was to come. We were to be in Arkansas for 8 days. Yeah, right. We arrived at UAMS at 8:00 a.m. as we were told in order to get our "orders" just like in the Army. Then we ran to our first appointment which was set for 8:15 and was across campus, quite a trek for us. Alan was mobile as was I at that time, although my knees were beginning to fail quickly. When we got to the first appointment (a bone marrow biopsy - BMB) we waited and waited until it was almost time for our second appointment. Good thing we had a cellular phone at the time so I could let the next appointment know we were going to be late. I'm only going to tell you about the BMB this time because it's a very difficult thing that Alan (and I by sympathy) had to endure. In a BMB they screw a drill bit into your hip bone, pull it out, then put in a long needle into that hole, and extract a bit of bone marrow. Alan still has scars from this procedure. The difference between UAMS and our Dr. in Cincinnati was that in Cincinnati he was numbed on the outside, and given a drug to make him really drowsy, and since I was in the room for the first BMB in Cincinnati, I know that he slept through the procedure. Dr. Cody was wonderful about it. In Arkansas they do so many BMBs that it's like an assembly line. They put the patient on one of terribly skinny bed-like things that are in doctor's offices, they actually tie the patient onto the "bed" while the patient lies on his stomach, then they do their work. The first time they did this, we were expecting something to ease the pain, but they gave him nothing -- no numbing no pills to relax him, nothing. The pain must have been awful because I could hear him all the way out in the waiting room. He fainted, they said, at least twice. Poor man. He looked awful when they pushed him back into the waiting room. I "borrowed" their wheelchair and quickly pushed us over to where they were going to take his blood. NEXT TIME. The biggest plus of their system, I have to say, is that the doctors have all the information they need 24 hours after the test. No waiting for the results, and if necessary, the doctor can get the results in less time than that, i.e., it's an emergency. So, next time, I'll continue the beginning of Alan's bout with MM. This next stop is where the tears and frustration really began to build up in me. Alan just went along for the ride. ttfn

Am I doing as well as I did before cancer?

Yesterday, after Alan has completed his daily water exercises, he asked me if he was as mobile as he was before he was taken down by MM. Unfortunately, I had to tell him no, he was not. First of all, he's 12 years older. He's 66, not 54. That makes a difference. Second, he almost died three times. Third his body had been atrophied for several years from non-use. However, on the plus side, he is doing so much better than he has done in 12 years. It's amazing how much he has improved in the last year. One of the reasons for that is probably because we stopped him from taking interferon. We had noticed that after each treatment he was very weak and barely able to walk, so we stopped it. Cold turkey. We should have weaned him off it, I supposed, but we didn't. He lived through the non-weaning process and determined he was going to get to a place where he could walk to the mail box, walk around a ship while we cruised the Caribbean. He was going to be well enough to hold his grandchildren and play games with them. He is doing that and more. So, there is light at the end of the tunnel, and this is not the first tunnel through which we've passed in 12 years. It is the last of many. ttfn

Here we go!

The first doctor we visited was our family doctor who took one look at the bump on Alan's chest, which had grown since I first felt it three days before, and sent him to an oncologist. I don't recall his name, but he checked Alan out the same day, ordered an MRI, and when Alan went back, he said the bump was something called a plasmacytoma and it was nothing to worry about, but he was referring Alan to another oncologist, Dr. Robert Cody, and he would tell him (us) what the procedure was for removing the plasmacytoma. Well, what the first doctor didn't tell us was that Alan also had multiple myeloma (bone marrow cancer, often called blood cancer, but it is not blood cancer, but it is bone marrow cancer). The MRI showed that graphically, and the plasma thing was a result of the MM racing through Alan's body. The doctor warned him to not lift anything heavy, to not ride his tractor to mow the lawn, to basically try not to move very much because his bones were breaking and they were very weak and he could break more bones very easily. The plasmacytoma had broken his sternum. Doctor Cody referred Alan to the team of oncologists at the University of Arkansas where they do nothing but work on MM patients, testing new drugs, new methods, etc. Alan was assigned to a test group where he would have two autologous bone marrow transplants and months of chemo before and after the transplants. An autologous transplant is where the patient's own stem cells are used to in the transplant instead of getting cells from someone who is compatible. The stems are collected in a process call aphoresis. After being told by Dr. Cody that Alan had maybe one year to live if he did not get any treatment, and after several hours of prayer, Alan believed God wanted him to do what the doctors said to do and he was ready to do that. With treatment he might (MIGHT) have five years. So, we travelled out to Arkansas for Alan's first round of treatments to get him read for the bone marrow transplant #1. More to follow. ttfn

Getting started on the journey

I find it interesting that this idea came to me -- the idea of talking about our working through the various stages of this cancer -- the same evening that VP Candidate, Congresswoman, and Fox News Contributor Geraldine Ferarro was passing because of the same disease. She was diagnosed about the same time as Alan.

Alan and I met in 1959 and were married in 1966. Alan was diagnosed in 1999 with multiple myeloma (MM) and our lives were changed drastically. And I don't know how we could have gone through the near death experiences, the chemo, the follow-up, the never really feeling well, without the Lord Jesus Christ. He has been our strength, our peace, our mercy, our healer.

It has been a difficult time in our life. So many days have been spent in bed (Alan). So many days have been barely worth living through (Alan and Me). So many days where God has blessed with relatively good health and the ability to do things that we thought would be so simple at this time in our lives.

Alan was only 54 when he was diagnosed with MM, and the diagnosis was a fluke -- a merciful fluke. Alan had been having bad back pains and our doctor, as well as our heart specialist, said he had pleurisy. He was also having difficulty staying awake while he was driving the car.

One day I was rubbing my hand over his upper chest and I felt a bump -- a bump the size of a baseball -- sticking out of his chest. I told him he needed to get to the doctor right away. But since his mom was visiting, and he didn't want to interrupt her visit, he put it off the doctor's visit for a week.

I made him go to our doctor the day his mom left for her home in Pennsylvania. Our general practitioner took one look at him, sent him in for an MRI (immediately), which was read the same day, and he was referred to the best oncologist in Cincinnati (as far as we're concerned, and Cincinnati magazine agrees with us) who read his MRI, the PT scan of the lump and said Alan has multiple myeloma. Two days later we were traveling because of Dr. Cody's advice and recommendation, to Little Rock, AR to UAMS for one of their treatment trials (for MM).

When we first visited our Cincinnati oncologist (Dr. Robert Cody) we didn't go alone. We took a friend of ours who is a pharmacist with us. It was a great idea because he could ask questions about the disease and treatment that we wouldn't have thought to ask. Dr. Cody told us that Alan might have a year to live if we passed on any or minimal (comfort) treatment. If we went to Arkansas, he couldn't tell us how long Alan could be kept alive nor his quality of life, but the medical journals gave kudos to UAMS and their various treatments. They were actually looking at as long as five years life expectancy.

Alan has been alive now for almost 12 years!

I think I'll stop here and continue on another afternoon.

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