figuring this out

So how to title this...not easy as I don't know how this will evolve or if it will. right now I just have the need to put something down. I assume that this is the way most average people start blogs. Something that has to be said, something huge happens on a scale you have never encountered in your life...you know that it has happened to others but you just can't quite fathom that it is actually happening to you. I wish it was because my life was just too amusing not to share and that by putting it out there I would touch or brighten someone else's...but unfortunately that's just not going to be the way. Crap!

So I started writing about a week ago in Word just to get some stuff down. So much stuff with not having any answers yet. As it is with putting it down for me (and potentially) others to see, it may just seem that much more real. You know I could go on and on like this I realize...saying nothing...being cryptic....just to avoid saying it out loud.

So maybe I should just get to it and say how it has happened. My 40th year that I never expected.
I can’t help but feel that I somehow jinxed myself. I have been known on several…actually many occasions in the past few years to admit how fortunate I feel when I talk to people about may part-time hours, close proximity to work and the great sitter we have for the girls right next door! Then I top it off with Steve also being able to walk to work and come home for lunch everyday and being able to get by with one car.....we do have a very ideal home situation at the moment. I shouldn’t get so superstitious but somehow in retrospect I can’t help but feel like maybe I have been a bit smug.

This did start just after my 39th birthday....technically my body’s 40th year. As more people hear my news I sense many want to hear how this started. Partly because they can’t help but worry for themselves and hope to glean some bit of wisdom as to how handle a potentially similar situation. In retrospect, there are of course many things I would likely do differently.

Everything started last June. After spending a Friday night sleeping on the floor at Wynne’s Sparks weekend camp (she was nervous about staying alone of course...being only 5yrs old at the time) I drove back to KW on my own and while driving noticed a lump on the right side of my neck. I of course showed Steve when I got home and asked him what he thought. He didn’t seem too alarmed, nor was I, but did make and appointment with my family doctor.

Given how busy doctors are in KW the appointment was scheduled for June. She looked at my neck and indicated that lymph nodes can swell for various reasons since the lymphatic system is the bodies defence system against everything that’s thrown at it. She said we would do a routine blood test and a chest X-ray to make sure everything else looked fine and then also ordered an ultrasound of my neck. Once you get into the diagnostic testing there is a certain amount of waiting. Luckily blood tests and x-rays are easily done as soon as you can get yourself to a lab or diagnostic imaging centre.

So I had the x-ray, blood test and ultrasound and everything looked normal other than what was described as “reactive lymph nodes” in my neck. This was a fairly satisfactory answer to me at the time. We would watch the nodes and if they were just reactive they would go down…and low and behold when I had a follow up ultrasound they had apparently gone down. All good. I wasn’t nearly as concerned and was actually really lax at booking the follow-up appointment to the second ultrasound. Then in September I noticed another lump on the back of my neck and e-mailed my doctor’s office to book that follow-up appointment. A few days later, in response, I received a requisition in the mail for another ultrasound 3 months from the last (November 26). That had been the recommendation, to do a follow-up in 3 months. So I waited and was really not too concerned. Part of this lack of real concern stemmed from the fact that the nodes in my neck had shrunk between June and August and as the Doctor had reassured me....bad things don’t usually shrink.
Then in October we are quite sure Wynne had H1N1…she had all the signs. Viruses always seem to hit her hardest out of all of us! At the same time as this the right side of my neck swelled up again and I didn’t get sick…Steve did get something but not as bad as Wynne. My immune system seemed to be working well for me these days.

I would wait until November. I was convinced I had some super immunity that was only manifesting itself as a few reactive lymph nodes....if it was that or a full blown flu I would take the lumps. So I continued on telling a few more people about my lumpy neck, went to NY with Su, waited for my 3rd ultrasound, it came and went with nothing more than reactive lymph nodes, nothing the radiologist looked at caused any greater concern and really the true test was I felt fine! I didn't get any follow up calls to come in. I did finally request and appt on Jan 3 and they booked me in for the end of January. They didn't seem to be too concerned!

So what made it all change? Apparently my super immune system did not deal so well with a cold I got in early January. I went from lumpy neck to puffy face...actually just the right side again. Possible infection? It seemed to make sense so since I had a follow-up appt booked with my family Dr on Jan 27th I would just leave it at that.

I was getting self-conscious. I was sure people were noticing my puffy lopsided face but the reality was I noticed way more than any one else did. Now I know that's true after asking people.

Well my doctor certainly noticed when I came in for my appointment. She took one look at me and said let's do a biopsy. That was the first thing to deal with...I could barely use the word when I told my mum...I said "tissue sample" an she said "you mean biopsy?" She didn't want to use the word biopsy and her daughter in the same sentence.

My Dr said She wanted the biopsy done within 10 days. So I went home and waited for the call and we did some biopsy research. So then instead of a referral to a surgeon I was referred to an ENT (ear nose and throat Dr...not the big giant trees from LOTR...although I did like to call him an "ENT" although I since have accepted that 'E''N''T' is appropriate way to refer to them). That appointment was set up for February 2th. So the ENT asked me lots of questions and wanted to try me on antibiotics for two weeks to see if I responded. He also explained about Branchial Cleft Cysts and after doing some research I was hopeful that this would be the final diagnosis. I am amazed by what your body can trick itself into believing. I was convinced the antibiotics were making me feel better and some of the swelling had gone down. In fact I still am. I had a CT scan of my neck on Feb 5th and then back to the ENT Feb 17th. He looked at me...thought it looked worse and proceeded to tell me it was not a Branchial cleft cyst and that a biopsy would be the next step after all and sent me home with a copy of the radiologists report from the CT scan (where it said the lymph nodes "may be neoplastic and due to lymphoma).
I have to say I was surprised. It was not what I was expecting. Not sure why....I guess I tend not think the worst although I had considered it at times and sufficiently scared myself by looking up "lumps in neck" on the internet...trust me ...don't do it.

So after a few days of waiting they booked me for an Ultrasound Guided core biopsy on Mar 4th. Almost 2 weeks away...I was now starting to feel much more anxious about it all and 2 weeks seemed a long way away. I called back and said I would prefer to go ahead with a full excisional (removal of an entire lymph node) especially if it could be done any sooner...since the core biopsy may not have been diagnostic. So they also ended up booking the OR room for Mar 11th for a full excisional if need be. That was as fast as it could proceed apparently.

My sister-in-law DR was a huge help through all this and she also felt 2 weeks was too long to wait and after discussing it further asked if it was okay with me for her to call my DRs directly to see if there was any way to move things along. Whatever she said was persuasive and the ENT booked me in on Feb 25th to do the core biopsy himself (the other core was to be done by others). So I show up at St. Mary's for this core biopsy and the ENT tells me he has decided to take out my enlarged supraclavicular node too...in addition to the core from the nodes on my neck. Good...go for it I thought. Get it all done with local. I wasn't keen on the general anesthetic. You know I have never spent any time at the hospital in my life except for when I was born! Something else I maybe should not have been smug about.

So the deed was done..I saw the node...they cut it up and sent it for testing....including lymphoma protocols. Now the waiting again..appt Mar 5th with ENT to find out. I also saw my family Dr Mar 3rd to find out about blood test and x-ray results from Jan 27th. X-ray normal, blood test a bit off from normal for a few blood count parameters. She also semi-prepared me without being totally direct....not that she knew anything at that point. I think she thought it was likely lymphoma of some sort.

Steve went with me on Mar 5th and it was confirmed. They had detected Reed Sternburg cells in the node and it was indicative of classical Hodgkin Lymphoma Nodular Sclerosis. Just the other day online I saw someone say that they had a hard time with going from healthy individual to cancer patient. I have to agree. In a matter of minutes I think everything felt changed....but wasn't. I was still the same person but now I am going from feeling like myself to a statistic of sorts. However I do plan to be on the positive side of the statistics.

So now we are at the next steps: Staging and then treatment. I have to say the staging I am finding stressful waiting for. I can't believe how long it took to write all this down. There are so many other things that I want to put down...not sure for who's benefit or curiosity but I just shouldn't do more now. The questions I would have if I was reading this? Have you had any other symptoms? Do you still feel fine? Who have you told? Have you told the girls (no)? Why do you think I got this?...that's a good one....with no answers unfortunately. So I will try to answer these and share more as things proceed.