How I Discovered I Had Lymphoma

About a year ago, I started experience back pain occasionally – maybe a few days every month or so.  As the year went on it would come a little more frequently, but still I could usually pinpoint a cause: a long drive, a long plane ride, too much football.  Then in February I got sick.  My symptoms were pretty similar to something that was going around at the time: fever, coughing, and generally feeling bad.  It went away, but then a few weeks later it was back, along with a complete lack of appetite and slight nausea.  Then it went away again … and then a few weeks later it came back again.  My back pain would come along with the other symptoms, but I assumed they were unrelated.  Also, I noticed that my right leg was swollen and much larger than my left one.

In the middle of May, I got an MRI to check out my back.  The doctor told me that I had a little bit of arthritis – but also that a swollen lymph node had showed up.  He ordered blood tests to see if it might be a virus, and they came back without any evidence that it was.  At the end of May I got a CT scan, which showed enlarged lymph nodes all through my abdomen and somewhat in my chest.  My doctor told me the news: he was about 85% sure that I had lymphoma.

The first week of June I met with my hematologist (a doctor specializing in blood diseases, including lymphoma), and he was even more confident than my primary doctor that it was lymphoma.  The next week they did a biopsy of one of the lymph nodes, and later in the week the doctor called and told me that they did not have the results yet, but that it looked like Hodgkin’s lymphoma.

Earlier this week, the doctor called and told me that the pathologist still doesn’t have the final results yet – they need to finish up one slide – but  for all intents and purposes we can assume it’s Hodgkin’s lymphoma.  He got me to set up a pulmonary function test (which I got on Thursday), a PET scan (which I got yesterday), a MUGA scan (a kind of heart scan, scheduled for next Monday), a bone marrow biopsy (scheduled for next Wednesday).  Also, I need to have a port put into my chest for chemotherapy.  They have scheduled chemotherapy to begin on Tuesday, June 30th, in about a week and a half.

We still don’t have the final official diagnosis, but I’ll be very surprised if it’s anything other than Hodgkin’s lymphoma.  In any case, the treatment will be about the same even if it somehow turns out to be non-Hodgkin’s lymphoma: chemo every other week for about six months.  This means I won’t be moving to Toronto as soon as I had planned, but I’m still hoping to move up there after treatment ends.

We still don’t know what stage it is; we should get results from the PET scans on Tuesday, and that will show how widespread the cancer is.  Even if it is at a later stage, though, Hodgkin’s lymphoma has a high rate of successful treatment, and my age and relative healthiness other than the cancer will help out with that.

My family and my friends have been awesome.  I feel completely loved and completely taken care of.  And I know that the Lord is guiding me, and that He’s bringing good out of this whole process.  Already I’ve seen some of that good: a new appreciation for the people in my life, new insight into what it’s like for people who struggle with disease, a new sense of what it might REALLY mean to trust the Lord.

I’m going to try to update this blog fairly often to let people know what’s going with my diagnosis and then with my treatment, but I do have a poor record with regularly updating blogs… Still, I’ll do my best to keep it current.  Thanks for reading, and thanks for helping me out through this bump in the road on the way to the rest of my life.

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6 Responses to “How I Discovered I Had Lymphoma”

  1. newsy1 Says:

    My husband was recently diagnosed with small cell lung cancer, the worst kind. We go to a special new cancer clinic in Colorado, and before they got the diagnosis for sure, they said they were hoping it was LYMPHOMA because it was the most treatable. 3 different doctors we went to said the exact same thing. They said it responds particularly well to chemo. You might know this already, but just thought I’d mention it. cathy

    • starkey Says:

      Cathy, thank you for your words of encouragement. I’m so sorry to hear about your husband’s diagnosis. I wish you both all the strength and comfort in the world, and I hope he makes it through.

  2. Alison Says:

    Yay! Yet another blog.

  3. Margaret Heldon Says:

    Dear Coleman

    I wanted to let you know that I think your attitude to finding out you have this disease is admirable. It reminds me of the saying that it’s not what happens to you that is important, it’s how you deal with it. Also that everything happens for a reason. I believe that the Lord gives you the strength you need if you call upon Him. He is the true Healer. You are right that you will get a real idea of what it means to trust in the Lord. I’m learning that through caring for my mother. I realize that I’m gradually ‘living’ that trust rather than just saying the words. I say gradually because the big thing for me has been to keep hold of that trust. Consistent prayer and reading of the Word is my answer. Walking on this beautiful property uplifts me and reminds me of my blessings. Walking is also a good way to sort out ideas and think clearer.

    I know your road ahead will have its highs and lows but the important thing to remember is that when you are ‘low’ you will always come up again to a high place. Not an easy thing to keep in front of you when you are down as I know but I’m learning.

    All the best, Coleman. I’m sending a rainbow of love across the ocean to you!

  4. Bob Says:

    My father has just been diagnosed with this. I took him for his PET scan yesterday. He get’s his port put in Monday and then he is having a iron-infusion Wednesday. Do you know how long it takes for the port procedure.

    Thanks,
    Bob

    • starkey Says:

      It went really quickly for me – I think the procedure itself took an hour, then they waited around for 45 minutes for me to wake up. My thoughts are with you and your father as you start this journey – I hope that all goes well for you.

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