Sunday, November 29, 2009

The Preliminary Diagnosis

Wednesday, November 25th

My husband came with me to the meeting with my family doctor. My doctor explained that the preliminary diagnosis from the pathologist is Hodgkin's Lymphoma. While I felt sick to my stomach, I wasn't entirely shocked. I'd been preparing myself for the worst while hoping for the best. My doctor talked about prognosis and next steps and I felt numb. It was time to line up a CT Scan and get referred to the Tom Baker Cancer Clinic. Questions swirled in my head. When will I be treated? How bad is it? How will my family be impacted? Will I lose my hair? How will I tell my family and friends?

The rest of Wednesday was spent on the phone talking to various people in my life. It was awful. I stayed strong, but it was awful. The logistical things started to sink in too - cancel travel plans, handling the girls through testing and treatment, who can help us, and when am I going to get treated?

Thursday, November 26th

8:30am the phone rings as we are getting ready to leave for pre-school. It's the Cancer Centre and they want to see me tomorrow. They want to "get their hands on me" and feel my neck and talk to me. The nurse explains that I will need a surgical neck biopsy (yuck) and I need those CT scans done immediately. The nurse is on the ball and super friendly and warm. Exactly what you would expect but rarely get.

We drop our oldest daughter off at pre-school (my husband is with me because he'd booked time off due to a trip I was supposed to be on) and head to get our H1N1 shots. My husband thought of the vaccination before I did...with a compromised immune system it was now a no-brainer. We'll get regular flu shots next week.

Thursday afternoon, 2 more calls from the Tom Baker and a booked appointment for Friday morning to see the nurse and the hematologist. OMG things are moving so fast. I think I am still in shock.

Friday, November 27th

I had my first horrible sleep Thursday night. I suppose the anticipation of my first "cancer" appointment kept me up. Every dream I had was about cancer and I think I woke after each one. Interestingly, they were all positive! We arrived at 8:30am for our 8:45am appointment. I got my cancer "club" card at the general reception area and headed down to the "daycare" unit. Once there it was off to the lab for more bloodwork. Then we waited as our real appointment (apparently) wasn't until 10am. First we met with the hematolgist's assisant/nurse. She was positive but explained that, because we didn't have a concrete diagnosis, the doctors would not call this Hodgkins Lymphoma yet. Apparently there is an outside chance. But it's VERY outside. She gave me a book about lymphoma and took my height and weight and answered a few of our questions. Then we met the Nurse Practitioner. She came into the room and gave me a great big hug. I thought I was going to cry but in this crazy cancer Karla world, I didn't, I just smiled and carried on. More questions about my medical history. More explanation of the fact that we don't have a definitive diagnosis yet and that to get that diagnosis we need to do the surgical biopsy and the CT scans as soon as possible. Hopefully the next week to 10 days. Sigh. I hate waiting.

The nurse practitioner examined my neck and other lymph node areas. The big node in my neck is a bit of a concern as it is "deep" in there. I also know that there is another enlarged node in my chest. Apparently this is very common in Hodgkin's patients and, while it probably means I'm Stage II, it's really not a "big deal". There is also some discussion of the past year of my medical history and how I got to this point and discovering the lump. The nurse intimates that they are a bit interested in my arthritis and suggests that a PET scan is in order to ensure that there is nothing else going on. Enter the Hematologist. I think she's younger than me (how can this be???!!). She examines me and says that my lymph node is so deep in my neck that she would have thought it was my thyroid. We also talk about the need for a bone marrow biopsy. Dear me, that sounds worse than the surgical biopsy! They insist that it won't be that bad as I'm thin and it makes it much easier to get at (SHE SAID I AM THIN!!). They also say that it is unlikely there will be anything in the bone marrow but that they perform it to rule it out.

They also assure me that, even though I have to wait for all these diagnostic tests, there is no cause for concern of the lymphoma getting worse. Lymphoma acts very differently than a "hard" tumour like a breast tumour. 2 months from now they would see a minute difference in me from today if I hadn't started treatment. Well I sure hope they are right about that!

They sent me off for a new series of chest x-rays as my ones from the previous week have come back saying I have a mass that is 30cm....I kind of think I would FEEL that on my chest!! We head home at noon. There is definitely a sense of relief. I feel like I am going to get taken care of. I feel like they really care. I feel like I can allow someone else to take control for a while. I have a HUGE nap after we get home on Friday afternoon.

So here I am. No tests scheduled in stone yet 4 impending ones over the next few weeks. I should hear tomorrow about the CT and hopefully the neck biopsy. I may have to go to Canmore for the CT.

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