Monday, November 30, 2009

Freaking out and the Waiting Game

So last night I freaked out. I got sad, scared, angry, confused, and anxious all at once. I guess it was about time. I want to be strong for everyone, including myself, but once in a while, I suppose, you just have to cry.

Anyway, I heard from the nurse practitioner today and my CT (neck to pelvis) is scheduled for Friday in High River. Woohoo! Road trip! I talked to "S" (nurse practitioner) a few times today as I told her about my freakage outage and also asked her a ton of questions (most of which she could not give a definitive answer to but tried her best anyway to appease me). I found out that, if the surgical biopsy on my neck lymph node comes back the way they expect, I am likely to be given ABVD chemotherapy, 6 cycles. I'm not entirely sure that I understand what 6 "cycles" are but it sounds like I'll be getting treatment for 6 months to a year. My reaction to this wasn't great but I really got choked when I asked her about my hair. I could write an entire blog post on this topic alone. I am very likely to lose my hair. This may seem a trivial issue to some people but for me, it's like, why don't you just kick me when I'm down? No matter what my weight, shape, or size, I've been a fan of my hair. It's fine, I have a lot of it, and it's always been something people comment on. So the big question is....Am I a bald kind of girl rockin' the scarves or am I a wig kind of girl? Sigh. I wish I didn't have to find out.

Moving on...S also suggested getting my Mom out here for extra support during this waiting game. She acknowledges it's the most difficult part and that my Mom would probably appreciate seeing me and knowing that I'm "ok". I think it's a great idea and also, hopefully, will take a little stress off of my husband who definitely has a LOT on his plate right now. So I'm hoping to fly Mom in on Wednesday and perhaps she can accompany me to my CT scan and will be here for the surgical biopsy (which we are hoping is early-ish next week). I already feel calmer knowing that she'll be here - what is it about having your Mom around that just makes everything better?

I've also made some decisions on my personal training/working out. I am going to shoot for 3 work outs a week (2 less than normal) in order to maintain my weight and keep up my strength. I'll work out with my trainer until it's not possible or not recommended and he promised he'll try to work around my schedule. I had a thought though, what do I wear on my head when I'm bald and I'm working out and sweaty? Hmmm, I'll have to figure that one out.

I need to get a good night sleep tonight as last night was a waste. Hoping that I don't have a repeat tonight and I can increase my energy levels a bit for my training session.

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.

Saturday, November 28, 2009

The last 2 weeks of my life and the longest blog ever.

Pretend for a minute that this is you. It's November 25th, 2009. You are 37 years old, just celebrated your 5 year wedding anniversary with your amazing spouse, you have 2 wonderful little children (3.5yrs and 15 mos) and just got into great shape over the last 6 months. Sounds pretty good, huh? Then something happens. The unthinkable really. You are diagnosed with cancer. You know, the big "C".


That is the Reader's Digest version of my story.


The Technical/Chronological Stuff

Immediately post-partum of my 2nd baby (August 2008), I had incredible pains in my lower back and pubis symphysis. I suffered for a few months until I couldn't bear it anymore and ended up getting an MRI and blood tests and wound up in the Rheumatology Department in February 2009. My ESR/CRP count was higher than the doctors wanted to see and I was defnitely exhibiting some arthritic symptoms so the doctors said that I might have something called Ankylosing Spondylitis, which, roughly described, is arthritis of the sacroiliac. So I was a good patient. A great patient. I took ibuprofen twice a day and did physiotherapy twice a week. I got better quickly and by the end of April I was completely off ibuprofen and was able to wind down my physiotherapy shortly after that. I went back to Rheumatology in May and they liked what they saw, except for the fact that my ESR/CRP was up another 10-15 points. They asked me to follow up with them in August. I started personal training twice a week and cardio 3 times a week and felt better and better. I attended my appointment in August at Rheumatology, to find out my first doctor was now on maternity leave and I had about 5 minutes with the head of the department. I told her I felt great, she told me my ESR/CRP was up again and that I should not come back to Rheumatology (unless I had pain) and to repeat the blood tests with my family physician.

I am a good patient. I followed up 4 weeks later with more labs. MY ESR/CRP was up again. I asked what the number was, she said 55. She asked if I felt ok. I said yes. We decided to repeat the test in 4 weeks. It was September. Pre-school started, dance class started, I was working out 5 times a week, the girls started to drop naps, I lost track of time. So, at 6 weeks I had the test repeated. November 12th, I got a call at home from my doctor. My ESR was 72, CRP also high. Please come in, we need to revisit your charts.

I am a good patient. I am also a good student. I decided to find out everything I could about the ESR and CRP tests. The best I could glean was that they are an overall indicator of inflammation levels and in some cases they are used to indicate a person's "healthiness" or response to treatment. I also learned my ESR level should be like 8, not 72. I read that the test has to be properly conducted or you will get an incorrect reading. I figured that didn't apply to me as my tests just seemed to go up and up and up. My body was trying to tell me something.

I surfed some more. What types of diseases use this test as a diagnostic tool? Google. Arthritis (obvious), cancer....ok I didn't get past cancer. Lymphomas. What is a lymphoma? Google. Symptoms of Lymphoma. Google. Fatigue. What Mom isn't tired? Night sweats. Yeah but women have "temperature issues" right? Neck lump. Let me see, right hand goes to right side of neck, and OMG. I have a lump in my neck. No I don't, this is preposterous. Mom, do I have a neck lump? (Mom is in town because my hubby is in the UK for work). Yes, I do feel a neck lump. Crap. Skype hubby. Can you see this neck lump? Um no, you are overreacting. Right. Probably. Hubby comes home on Saturday. Yes, I do feel a neck lump. Sick feeling.

Tuesday November 17th. Appointment with my family doctor. Hubby comes with me as I have an ominous feeling. We review my charts and family history and then I drop the bomb. I have a neck lump. I think. She examines and confirms. Do I have a sore throat? No. Do I have a cold? No. Me - what are you thinking this is? Well it could be anything. Yes, I say, but I do know what the worst could be. Which is? Lymphoma. Yes, but that's an outside chance. Right. Tuesday night - labs, chest x-ray, hockey game.

Thursday November 19th. Ultrasound of abdomen and neck. Tech asks me to wait while she confers with the radiologist. Two minutes, three minutes, four minutes...ten minutes and a knock on the door. Now, I've had my share of ultrasounds but never had this happen. Radiologist walks in - we are seeing multiple abnormally sized lymph nodes in your neck. Your organs look good so that is encouraging, but you need to phone your doctor immediately and book a fine needle aspiration (FNA). I'll be honest with you, in someone your age and with no other symptoms, we often look to lymphoma. Don't wait for your doctor to receive the report from me, get on it right away. The drive home (by myself because radiologists NEVER tell you results when you are there, right?) was bad. Probably shouldn't have been driving. Talked to my doctor and they end up booking the FNA for the following Tuesday.

Tuesday November 24th. Start you day with an FNA and nothing worse will happen to you that day. As I described it to my husband on the way home, it was like being in a sci-fi movie where the aliens (pathologist) were taking samples of the human (me). Anyway no freezing, 2 biopsies, and no answers. You'll get the report by Friday morning at the latest. Sigh. We walk out of the office and I burst into tears. Two minutes later I'm ok and we're on the way home.

Wednesday November 25th. 9:01am my doctor's office calls. We have some preliminary results, can you come in at 11:30am. My hear racing from the shock of the call (when I was expecting nothing until maybe Thursday) I call my husband and go to the mall. Shopping. Shopping can take my mind off the next hour and a half. Please let it take my mind off of everything.