Thursday, June 5, 2008

Jim's Lymphoma History

Jim, was diagnosed with low grade lymphoma in the middle of April, 2005. I was in my last two weeks of nursing school. It was a very strange time.

Jim had not been feeling well. He was feeling very weak and having trouble running for his physical fitness test. His doctor put him on iron, but it did not help. I remember he would come home from work and fall asleep on the couch. If you know Jim, you know that is strange because he is forever moving. Also, he would have severe stomach pains after he would eat. Later, we found out that his spleen was triple in size, so when he would eat his stomach had little room to expand and would cause terrible pain. He was also having night sweats which he did not tell me. His lymph nodes were enlarged but he really was not concerned because he thought they were fatty tumors. He has always had lipomas (fatty tumors) on his arms and back, so when he felt the enlarged lymph nodes he just thought he had more lipomas growing. Jim is one who never goes to the doctor and never misses work even when he is sick. On the day of his PT test at National Guard, he came home and looked terrible. I can remember thinking he was wasting away before my eyes. I was suddenly very worried as I realized the weight loss {without trying} , lack of energy and the grey coloring of his skin. We decided that day, he should go back to the doctor. I thought that maybe he had contracted something from an over seas trip he went on in January. The next day, he went back to his doctor. His doctor felt Jim's stomach and told him that he had a 10 centimeter mass. He ordered a CT scan for the next day. Right after the scan, the Radiologist met with us and showed us the scan. He told us that it looked like Lymphoma and that it looked pretty wide spread. We went home in shock. Jim had had a very good friend die of Lymphoma a few years before. It had taken his friend in 2 months so we were terrified. This definitely did not fit in our plans for our future. When we got home Jim went out and mowed the lawn. He was so weak, that he came in the house and sat on the chair and cried. He said, "I think this is the last time, I will be able to mow the lawn." He kept saying that this was not supposed to happen because we were supposed to go on a mission together.

The next days are kind of a blur. I know that I cried for a week straight and then at that point I was dry and could no longer cry. The day after Jim's diagnosis, we went to the Temple. I cried through the entire session as I watched him across the room from me. One day my brother brought up his motorcycle and had us go for a ride. We went up to the ski resort where Jim had learned to ski for the first time that year. It was spring, so there was no snow. We sat on a chairlift and talked about what a wonderful life we had had together and the fun we had skiing that winter. Jim was afraid that would be his last winter skiing with his family. If you know me, you know that I am very afraid of motorcycles. I will go on them, but I like to go slow. I can remember flying through the canyon on that day (with no helmet) not afraid. I can remember that I thought that I didn't care if I lived or died, as long as I was with Jim. Later, I obviously felt guilty about that because of the kids. When you are going through this, you can't really help how you feel. You just feel it. And, you go through the gambit of feelings.

After the diagnosis, we spent many days going in for tests and then just waiting. The waiting was terrible. We could deal with what we had to face, but we just wanted to know what kind of cancer he had and what the plan was. When we finally got answers, we learned that this kind of Lymphoma was not the kind you wanted if you were 42 years old like Jim. The doctors told us that we could treat the cancer but not cure it. They also told us that his cancer was stage 4 which means it was spread throughout his body and in his marrow. We were also told that the typical time a person has with this kind of cancer was 7-10 years. In a way we were relieved because of his experience with his friend and we weren't given months. But as young as Jim was, 7-10 years is not long enough to watch your children grow, have grandchildren, and go on a mission with your wife. That night, Jim decided he wanted to take each of the children off alone and explain to them on their own level about his cancer and what that meant to our family. At first I felt a little left out because I wasn't invited in on the conversation. Of course, I just let it be but, I decided that this was Jim's way of taking control over something that he had no control over. Each child responded differently. But, each of them responded in such a strong way and full of faith. Spencer at that time was 12 years old. He looked at his dad and said, "Don't worry Dad, We are a strong family and we can do this." That has held true to this day. I am so proud of all of the children. They all look to the future with great hope and faith. We have learned to look at things in a whole different light. We laugh alot. Sometimes we laugh at things that others might find morbid, but we have found humor to be very healing.

In the beginning, one night Jim's brother came up to our house and gave him a blessing. In the blessing, Jim was told he would live long enough to watch his children grow up. What that means we do not know. What is grown up? We only know that this gives us comfort. We don't worry so much about the time frame anymore, because we realize that nobody knows when it is their time. The doctors could tell you 10 years and you could live 6 months. They could tell you 6 months and you could live 10 years. Also, a healthy person could die in a car crash tomorrow. So, bottom line, it really doesn't matter what you are told. In a way, we feel very lucky because we have been given a gift. A gift to live each moment and appreciate each moment together.

On May 1, 2005, my birthday, before Jim had any chemo, his spleen ruptured. He woke up in the morning with severe pain. He actually wanted to go to the ER, so I knew something was wrong. As soon as the ER had a chance to evaluate him they told us he was going in for emergency surgery. I asked if we had time to get my brother here for a blessing, the doctor said no. I called home to tell the kids and my nephew Alan was there from Provo. He was sitting in church that morning and felt inspired to come and visit his Uncle Jim. He immediately came to the hospital and gave Jim a blessing. As they were wheeling Jim into the OR, I was suddenly scared that this was it. I was afraid that this was how I was going to lose him. He looked up at me then, and told me that just in case he didn't make it, my birthday presents were up in the closet. I was so mad at him for saying that. I kissed him goodbye and waited again. After the surgery, he spent 5 days in the hospital. He had to wait a month to start his chemo, because chemo does not allow wounds to heal.


After 6 months of Chemo, Jim's body and marrow were finally free of cancer. His strength was coming back and he felt much better. We even took a trip to Disneyland with the family. In January of 2006, Jim spent a week harvesting his own bone marrow for a transplant that we knew would happen when the cancer reoccurred.


In February of 2008, Jim's Lymphoma reoccurred. His doctors told him that he would have Chemo until the Cancer was down or gone and then go through a bone marrow transplant using Jim's own marrow. Now, Jim has gone through 4 Chemo therapy treatments and is ready for his transplant. The transplant is not a cure, but the hope is that it will buy him about 5 more years, at which point when his cancer returns we will look at the options at that time. With cancer, the more time you have alive, the more time there is for research and treatment options. At this time his siblings are being tested to see if they are a match for stem cells. When this transplant fails (cancer returns) Jim can do another transplant with donor stem cells. Hopefully, that is a ways down the road.


On Monday, June 9th Jim will go to LDS Hospital for pre admission work ups and have his Central Line put in.


On Tuesday, June 10th, He will be admitted to LDS hospital for the transplant. The first five days he will undergo extensive chemo therapy. The idea is to kill off his bone marrow. So, after this chemo, his ability to make any kind of cells is gone. On the sixth day, (Monday) he will have a day for the toxins to leave his body. On Tuesday, June 17th, He will be given back his own healthy stem cells (the ones we froze 2 years ago) through a transfusion. The remarkable thing is that the cells know to find their way back to the bone marrow. Once that happens they will begin to rebuild the marrow and make new cells. During this time, Jim is very susceptible to getting infections. He will need blood transfusions to keep his blood count up and antibiotics and anti fungals to keep him from getting sick. His total hospital stay should be about 3-4 weeks. At which time, we hope he can come home. The most crucial time after the transplant is the first 30 days, but he will have to be extremely careful for about 3 months.


We as a family know that this will not be an easy time. We know it will be brutal for Jim and we are so grateful that he is willing to go through this to spend more time with us here on earth. We also know that it will be hard on us as well. It is most disturbing to see someone that you have known to be strong all of their lives and someone that you love so much be so sick and weak. None of us though, including Jim, feel like this is the end. We feel like this is just a stepping stone in order to be able to spend more precious time together.


I will try to post each day while Jim is in the hospital in order to update those who love Jim and our family (which I know are many). Thank you so much for your love, support and prayers as we embark on this journey.