Tuesday, February 5, 2008

How it all began

Justin and I have found the stories of other people's experiences to be so helpful. I thought it might be helpful to tell his story, hopefully helping those dealing with a similar experience.

It is hard to think back and identify exactly when this all began. Justin was "not himself" for quite sometime but we just didn't realize it. The first time I really noticed that something was wrong was right after we brought Jackson home from the hospital. Justin got a really bad cold which seemed difficult for him to shake. I remember thinking how odd it was for him to feel that way, especially since he had a really bad cold about 4 months earlier and that too seemed to wipe him out. That was July. We then began to notice that Justin was very fatigued. We chalked it up to having a newborn and stress at work. When the drenching night sweats began late fall, we knew something was not right. I began to worry that he was taking on too much stress; a new house, baby, work. I remember "googling" night sweats and looking up on "Web MD" to read that drenching night sweats and fatigue were signs of cancer. I personally shrugged it off; there was no way in my mind he had cancer.

Thanksgiving weekend, Justin frantically approached me to feel this lump near his shoulder and his swolen lymph node on his neck. Again, I just strugged it off and told him it was nothing. But by Christmas I started to worry. Not that it was cancer, but I had diagnosed him with a thyroid problem and knew he needed to see our doctor. We were in the middle of finishing up paper work and testing for our life insurance, so Justin wanted to wait until that went through until he went to the doctor just in case it was something serious. I obliged and we both held our breath when the results of his bloodwork came in the mail. He passed with flying colors. I reasurred him that if something was seriously wrong, the bloodwork would have picked it up. I thought insurance companies covered all corners. So he went to the doctor.

Dr. Lamb, our primary care physician, listened to Justin tell him about his symptoms and ordered a bunch of tests to be done that week. I guess Dr. Lamb lacks a good poker face because Justin said he knew right there it was serious. I kept telling him that it was still his thyroid. But when his chest x-ray came back, Dr. Lamb immediately called Justin and told him he needed to come in for an appointment that day. We rushed there to hear the news that he possibly had lymphoma and were sent over to Dr. Fata who confirmed Dr. Lamb's diagnosis the very same day. After a CT scan, PET scan and a biopsy, his specific diagnosis was Hodgkin's Lymphoma stage IIA. He had a large tumor in his chest and two other tumors around his neck.

This is where Justin's story is not so typical of a Hodgkin's patient and becomes quite a blur for both of us. Justin began developing severe headaches. He did not get out of bed for an entire week, they were so bad. Finally one Sunday, he began vomitting and his right arm and leg became numb. Dr. Fata told us to go to the emergancy room, but on the way I noticed a distant look in Justin's face and I began to ask him questions. He could not answer them. I could see that he was trying to answer my question, but just didn't know how. I called 911 and an ambulance took him the rest of the way.

It was a long 4 day hospital stay with many doctors from various fields in and out. We heard a variety of explanations as to what happened to Justin that Sunday morning. Not one doctor agreed with the other. Justin's headaches did go away. But no one could tell us why. The only thing agreed on was abnormalities they saw on his brain from his MRI. He was sent home and urged to begin treatment ASAP. He did the next day.

That wasn't good enough for us. We were already planning to seek a second opinion at Sloan-Kettering in New York and decided to move the trip up. Sloan basically confirmed his original diagnosis and told us to continued the course of treatment with Dr. Fata but said they would have to look at some more tests that were being sent to them to explain the abnormalities. They were confused about the headaches, loss of speech and numbness in his arm and legs since these were not symptoms of Hodgkins.

We came home on a Tuesday and Friday at 6:00 in the evening we got the most devastating call from the doctor we met with at Sloan-Kettering. She informed Justin that he had brain lymphoma and that he was to go to the nearest comprehensive treatment center for treatment. She said she would call later in the week with a referral to a doctor at the University of Michigan. Well, we were not about to sit around and wait! With the help of Dr. Fata, we set up our own appointments and spent the next week meeting with a lymphoma specialist and a neuro-oncologist. No one seemed convinced with Sloan-Kettering's diagnosis and they urged us to be patient and see how Justin responded to the high dose of steriods he was on and his chemotherapy. Brain lymphoma was rare, especially in patients diagnosed with Hodgkin's.

This was the hardest decision. Who should we trust? What advice should we follow? We ended up following U of M and waiting to see how his treatment relieved his symptoms. Justin responded very well to chemo. The steriods were a different story. Justin was very fatigued, had muscle weakness and a swollen neck and face. But after two months and a repeat MRI, it showed that things were working. Four months later, another MRI showed the abnormalities had gone.

It is remarkable to think back to the month of February and see how sick Justin was. I can truely see now that the steriods and the chemo have worked. He still has a few treatments left, but we are feeling so confident in his doctors and medicine that life seems to be moving back to normal.