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Archive for June, 2008

Second day of the Allopirinal and Prednisone. No alarming side effects just yet. DAMN!

We went downtown and had Dim Sum at Don Mee’s, did a little shopping and took the horse to Beaver Lake Park for a trail ride. My neice Clair came over for dinner tonight, certainly on a mission from my sister to make sure I am still alive. I apparently am, so Clair seemed satisfied. Actually, it was a very pleasant evening and I’ll be sad when I’m in a depressed immune condition and trying to limit my contact with coworkers, friends and family to minimize the chance of infection. That’s going to last, best case, four months.

Cass has started me drinking a lot of water, at least 2 litres a day. When I am on the chemo I will need to move the used up toxic drugs through my kidneys as well as all the waste products from the dead cancer cells. The amount of uric acid can be a serious challenge to your kidneys and kidney failure is a common (bad!) complication. To guard against this, it’s key to drink lots of water as well as taking the Alloprinal. The theraputic purpose of the Alloprinal is to increase the ability of the kidneys to move the uric acid out. It is typically used for patients who are suffering gout but in my case it’s used to enable my kidneys to handle the extraordinary load that chemotherapy will place on them.

Tomorrow is a work day before the Canada Day holiday. I’m hoping to get some calls to book the lung capacity test and the mugascan but they may be overloaded. Anyway, here’s hoping.

Cassie and I will be out on our sailboat, Darwin’s Folly, for tomorrow night. I’ll make another update on the evening of July 1.

“I am prepared to meet my Maker. Whether my Maker is prepared for the great ordeal of meeting me is another matter.” SWC

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I started the Allopirinal and Prednisone. Prednisone has a few alarming side effects (moon face, dependence) but I will only be on it for 5 days… not long enough for any of the serious ones to show up.

It was a very pleasant day and I allowed myself to wallow in it. We had dinner at our favourite restaurant in Victoria, Brasserie L’Ecole. We had some very pleasant banter with good friends and then went to the Wynton Marsalis and Lincoln Center concert. Wonderful.

Today I’ve noticed the insidious and unwanted return, to the fringes of my consciousness, of the most dangerous of all human emotions:

Hope.

It’s dangerous because it supposes that something good could come in the future and it’s difficult to allow myself that just yet. There’s an evocative scene in the Spielberg series “Band of Brothers”. A soldier cowers in a hole, paralyzed by fear. A lieutenant is trying hard to give him some words that will allow him to continue and master his fear. He says (paraphrase), “Your problem is that you still have hope. Once you accept that you are already dead then you’ll be able to function.”

Since my meeting with Dr. Sheila and hearing about the plan for my treatment and possibilities for recovery, I’ve allowed myself the luxury of hoping for it. However, I have to focus on the fact that recovery is a very narrow plank over a deep chasm. Some of the things that could push me off the plank:

  • I could be allergic to one of the critical chemotherapy drugs in the ABVD regimen
  • The bone marrow scan could show up positive for cancer
  • The mugascan could show that my heart will not stand the chemo
  • The lung capacity test could show my lungs are not capable of standing the chemo
  • I could get a mortal infection during one of the lowered immune periods of the chemo
  • I could survive chemo and die shortly after recovery from heart or lung complications
  • One of my other organs will give out for some other reason during the stress of chemo
  • ?

Anyway, now that I’ve written these, I won’t think about them anymore. At this time, there’s no reason to think that my relatively early stage Hodgkin’s Lymphoma will not respond to and be eradicated by the competent treatment that I am receiving. I’m going to step confidently along the narrow plank and disregard the chasm. ONWARD!

“Like my old Croation mother used to say: life is short, life is shit and soon it will be over”. Bitter Taxi driver from the Kid’s in the Hall’s “Brain Candy”

“Success is not final, failure is not fatal: it is the courage to continue that counts.” Winston Churchill

 

 

 

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 We woke up bright and early. I managed to sleep in spite of the discomfort of the very large lump above my clavicle. Otis seemed a little disoriented about not going for a walk with me but he enjoyed watering the plants outside. Cassie made me a breakfast of bacon, eggs and dry toast.

The BC Cancer Agency in Victoria is a very comfortable and modern facility. I filled out a form with all my particulars. They were very interested in my physical issues but also with my emotions and lifestyle…. whether I lived alone, whether I had family support and did I have financial concerns in relation to my illness. Here’s the link if you’re interested: http://www.bccancer.bc.ca/NR/rdonlyres/434A60B1-BAC7-4B80-B384-911495F2D3D9/28422/HAFasofOct07withrevisedPSCAN.pdf

I met my doctor, I’ll call her Dr. Sheila. She’s a medical oncologist and will be my primary director of treatment and primary medical contact while I’m being treated at the BC Cancer Agency. I liked her immediately. She’s a warm but businesslike middle aged woman who’s speciality is treating cancer with chemotherapy. She was selected for me because Hodgkin’s, at the stage that I have it, is most effectively treated with chemotherapy, and that is the medical oncologist’s speciality.

I am to be treated for 3 cycles of 2 treatments each at a frequency of one treatment every two weeks. If you do the math, that works out to 12 weeks of treatment. They will then do a PET scan http://www.bccancer.bc.ca/PPI/PET/default.htm which will determine whether any cancer is still twitching in me. If it is negative, I will do another cycle of two treatments at a frequency of every two weeks and then it will be watch and wait for the next year to hope it is really gone. If the PET scan is positive then I will be referred for radiation treatments.

But first, Dr. Sheila needs to get a bone marrow biopsy. She says that she is not expecting it, but that there is a chance that the cancer has spread into my bone marrow. We must know if it has or not to ensure that I get the right treatment. If the cancer has spread to my bone marrow then things are much more advanced than we will have thought. I tell her that I am very anxious about this test because everyone has told me how painful it is. They give me an ativan… which makes me a little goofy.

I’m also asked to participate in a clinical trial, to which I agree. It’s the “PREDICT” pilot which will examine the long term mortality and results of cancer patients versus their personal details: PREDICT  – Personal REsponse Determinants in Cancer Therapy – Pilot Study (MSFHR). They draw a few vials of blood for the purpose of the study and Cass and I hustled off to the Jubilee hospital (across the courtyard) for the bone marrow biopsy.

The doctor who does the biopsy is the haemopathologist that diagnosed my biopsy sample. He’s another sailer and has a Yamaha 32. He briefs me and gets into it. I’m lying on my side and Cass is beside me holding my hand. He freezes the skin and then the top of my pelvis bone and then sticks it in. I can feel pressure and a dull but deep pain in my hip. Then, when he took the marrow sample there was an intense pain through the middle of my right leg and hip. I screamed like a little girl and poor Cass nearly passed out. The lab tech ran to get Cass a wet towel and she was just fine after a minute or two. I had to lie for 20 minutes on a towel to make sure the thing was not oozing and I have to take it easy for the rest of the day.

I will also have a mugascan which is an ultrasound of my heart and I will also have a test of my lung capacity. These are needed to make sure I am strong enough to manage the chemotherapy. It looks like it will be best for me to stay at home for the first week after a chemo treatment due to the depressed immune effect that it has.

I also have a prescription for a drug named Allopirinal and Prednisone. Dr. Sheila says that Prednisone has some chemo properties and will kill some cancer cells while we are waiting for the real chemo to start. She’s expecting to begin my first cycle of treatment next Wednesday or Thursday.

For the record, the chemo drugs they are giving to me are:

  • Doxorubicin (ADRIAMYCIN)
  • Bleomycin
  • Vinblastine
  • Dacarbazine

This is also known as the ABVD regimen, a chemo cocktail. Give it to me shaken and iced… plenty of olives. Oh yes, alcohol consumption is not contraindicated… YES!

I’m lying on a roll of towel on my marrow biopsy wound and watching TV. Today has been a whirlwind but I can’t imagine getting a better start to our fight against my evil lumps.

“I never worry about action, but only about inaction.”
Winston Churchill

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Tomorrow we’re going to the BC Cancer center. I’m very anxious. Cass has spread the word to a few more of our close friends and I’m happy to see their supportive emails. I spoke to the management at work and everyone there is very supportive too. If I need to take a short term disability while undergoing treatment I will… but I still hope that I can keep working and not take more than a week off at a time if I have to. It’s nice to know I won’t have to worry about my work for the time being… I have plenty to worry about. Cassie made me special surf and turf dinner: steak with Alaska King Crab legs… I feel cared for and much less anxious. The big lump above my shoulder blade is very uncomfortable. I hope they’ll be able to do something about it soon. More tomorrow after our appointment with the oncologist.

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On June 7th, 2008 Cassie and I were in the shower and she pointed at my shoulder: “what the hell is that”. I had a painless bulge on the right side of the base of my neck. A quick trip to the local walk-in clinic received a brusque diagnosis of “lymphoma” from an insensitive, barely human doctor. I asked him, “This is serious?”. He just said “yes” and turned back to his desk.

The rest of the weekend was very terrible for both of us as we tried to get used to the fact that I was very ill.

June 9: We went to my regular doctor’s office as soon they opened and said that we would wait for any opening. The receptionist tried to put us off until an appointment tomorrow but Cass went feral and the receptionist backed down. My doctor saw me in 20 minutes and was absolutely wonderful. She suggested that it might be a lipoma but it had to be fully investigated. She ordered blood tests and a chest x-ray as well as an ultrasound.

June 11: I went for the ultrasound. The technician took some views of the lump and then went over to my left side and took some views through my abdomen, which I knew meant that something was wrong. He was taking a look at my spleen and liver to look for abnormalities. I knew that he couldn’t tell me what he thought, that was for the doctor to say… but I could tell that it wasn’t looking good. An hour later my doctor called and said she had called for the results, that the lump was a grossly enlarged lymph node and that this most likely meant lymphoma of some sort. She was very kind to me and assured me that even so, the prognosis was good. She assured me that 2 years from now she and I would be meeting in her office to discuss my remission and that that had been a lousy two years for me.

June 16: I have my CT scan at Victoria General Hospital with markers and vasodilators from the bottom of my jaw to my pelvis. I know that the results of this scan will indicate what stage the lymphoma has progressed through and find everything the lymphoma has compromised.

June 17: Cass is coming to all my appointments with me… I am so grateful. It’s the only thing that keeps my anxiety under control. We meet the head and neck surgeon. A partner of his is a friend of ours from the yacht club. He happens to be in the waiting room when we walk in. It’s good to see a familiar face and tell our story. The surgeon we see is wonderful. He shows us the CT scan results which are fascinating and disturbing at the same time. The good news is that I have no apparent lymph node or organ involvement below my diaphragm. Cass and I know this  means I am probably no further along than stage II lymphoma. The bad news is that one of the huge nodes is flattening my superior vena cava. The surgeon takes a look up my nose into my sinuses, down my throat and in my ears. He said he was looking for any bulging or pulsing relating to blood pooling in my head. He asked if I had any headaches or difficulty swallowing… I didn’t. Never-the-less, he told me to go home, not to drink or eat anything, and to expect a call for the biopsy operation. He was going to do it that evening. (!)

June 17 (later): I’m prepped for surgery. While I’m there Joe from my work shows up and takes Cassie for dinner… for which I’m grateful. When I come out Greg’s there too… all welcome familiar faces… and by the time I’m in the lobby on my way out… Sigrun as well. Thanks folks… I needed that.

June 18 – 23: The longest week of my life.

June 24: Back to the wonderful surgeon’s office to get my stitches removed. He has my biopsy results(!!!). I have the Nodular Sclerosis variety of Hodgkin’s Lymphoma. He tells me that this is the most common form of Hodgkin’s Lymphoma with a good prognosis for survival. He refers me to the BC Cancer agency for treatment.

June 25: I have an appointment at the BC Cancer agency to meet an oncologist on Friday morning which is June 27, 2008. In two and a half weeks, I have gone from an apparently well man to a patient with Hodgkin’s Lymphoma. My old life… the one where cancer was not a part of it, is over. I’m thankful for the support of my long suffering and wonderful wife for getting me through this first, anxiety ridden part of what I know is going to be a long and winding road.

“Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”
Sir Winston Churchill, Speech in November 1942

“For myself I am an optimist – it does not seem to be much use being anything else.”
Sir Winston Churchill, speech at the Lord Mayor’s banquet, London, November 9, 1954

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Shattered

It’s amazing how a healthy man who just celebrated his 46th birthday can suddenly be faced with cancer. After discovering a swelling above Tom’s collar bone on June 7, a whirlwind of tests and worry later, Nodular Sclerosis Hodgkin’s Lymphoma is the diagnosis. So that family and friends can stay informed, this blog will chronicle our journey to kill the lumps.

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