What now?

I have been wondering what to do with my blog. Whether to keep it up for a while? Let it mutate into a regular blog? I'm just not sure if I have it in me to make it an interesting read. It is nice to share and I can put some photos up...but I could also just do that on Facebook from time to time. Although my audience here are a bit nearer and dearer than the FB crowd. I guess it's still a good way give updates...but now it's easier to talk face to face about it!

Today I have an appointment to have my port flushed. I'm not looking forward to heading back into the chemo suite for this but it must be done. It's funny, the anticipatory nausea seemed to disappear with the end of chemo. I thought I might feel it when I was in there a month ago to get the bloodwork done but I guess since there is nothing to anticipate my body/mind has decided it needn't bother getting worked up about it! Good thing! Some of the chemo nurses told me stories about people being nauseous just driving past the hospital and when they happened to run into their chemo nurse out shopping or something! How would that make you feel as a chemo nurse..."It's great to see you...how are you?.....but you'll have to excuse me because the sight of you makes me want to lose my lunch?" I guess it's just an occupational hazard.

As many of you know I tend to be a rather tardy individual for most things. It's not getting much better with age. But there is one thing I seem to be able to handle doing on time....making the girls' Halloween costumes. I actually finished Avery's a week ago and Wynne's on Saturday night. Other than make up and hair (and a sparkly belt for Avery...they are ready to go! Maybe I learned my lesson Wynne's first few Halloweens when I did leave it to the last minute and it cut into the trick-or-treating time. Now that the girls are old enough to nag me...I have no excuse. I got the "did you work on my costume" question every day last week! I will post some photos here. Wynne actually said it was her favourite costume yet. It is very satisfying when you can make the idea they (and you) have actually come to life AND they love it!

My hair is growing way too slowly. I am impatient to ditch the hats and scarves but it will still be a while and I have decided that they design hats for people with hair....most hats look much cuter with hair poking out! I have been toying with the idea of incorporating my lack of hair into a Halloween costume but I'm just not sure it would be appropriate...or maybe just too scary for some! The front is still pretty short and seems to be coming in much slower.....I don't want a mullet! I may have to get it cut sooner than I think just to keep it looking decent. There are hairs that are almost an inch long but overall it's only about a cm....or shorter in front. Maybe I should get myself a good hair "tonic".

I have been working from home on Tuesdays and Thursdays...trying to keep regular 9:30-3:30 hours but am finding it hard to work here. I have no trouble getting started but it's the stopping I have trouble with. I can't switch my work brain off easily.....even when the kids get off the bus. The walk home from the office usually did that for me. The other problem is that we don't have an office. My laptop and reports are scattered about. I will likely head back into the office in November sometime. Although I likely get much more done at home without the distractions of being in an office. Once I start working here I am not easily distracted...I realize I haven't moved in several hours! Ergonomically working at home is not good!

I have had a few thoughts about whether consulting is something I can continue with. I am paranoid about stress levels. However, the part-time advantage, at the moment, outweighs all else and I am not likely to consider a career shift for a bit yet. I really can't imagine full-time work with all the kids' activities. I guess we just couldn't do it the way we are doing it now. I really don't know how some families do it!

On a final note..our lilac tree is still flowering. Now we have about seven small clumps of flowers. I am tempted to cut them and bring them in to enjoy the scent but they seem to be lasting so long in this cool weather!

All Clear

So I had my appointment with my oncologist today to go over the results of my CTscan.....and it's all good! All my nodes have shrunk to less than 1 cm so technically I am classified as having "no residual mass". That means I technically don't even qualify for the PET scan. PET scans are more often used to look at any residual mass to determine if there is still cancer or scar tissue. Since I technically have no enlarged nodes to look at, her preference is not to do one as there is a potential for false positives which would lead to more CTscans which means more radiation exposure (she said one CTscan is 150 times the radiation that you get from one chest x-ray). I am happy to not do it. Especially since I have been having possible arthritic pain in my back, right jaw and left hip and this inflammation my jaw would be hard to distinguish from enlarged nodes so I may have a higher chance of false positives (at least that was what was explained to me). So no PET scan but likely another CT scan sometime this year. I will continue to see the oncologist every 3 months for the next year for check-ups and bloodwork. I will likely get to have my port removed around Christmas (I wish it were sooner as it must be flushed monthly I found out today!) and will the oncologist again in 2 months from now (she bumped it up a bit so it didn't fall right around Christmas).

So it's all good news and Dr. McCarron (my onc) was all smiles...said it couldn't be better at this point. She did scare me a bit when she said that if it comes back within the first year then that's generally not good so I am going to be rather paranoid about any little bumps and lumps around my nodes. I am also loading up on the antioxidants and immune system boosters now that I can (not recommended at all during chemo).

My white blood count and neutrophils are already back up to 5.4 and 4.0 (reference range is 1.5-8 and I was below 1 all through chemo). This is one of the indicators for my immune system....so I should be pretty good and not as susceptible to everything which is great now that the girls are back to school.

So I will keep this short and to the point. All good news!
One last thing....this is a photo I took out of our kitchen window last week.

Yes it IS a lilac. Our tree has decided to have a second spring...just for me! I do love lilacs and their season is so short!

All done!!

So two weeks ago (Aug 31st) was my last chemo. Now I get scanned and we wait and see what the next steps are....radiation???...hope not. Today I have a CTscan on my neck (at 10:40am) and they will be looking at two neck nodes in particular that were still larger than 2cm at the halfway point. If they are now less than that then radiation may not be necessary. We won't know until end of September as I won’t find out results and have my appointment with my oncologist until the 27th.
The last chemo went pretty much the same as all the others. Steve brought the girls to come visit just before the actual chemo injection so that they had some idea of what it was all about. Avery had been there in the chemo suite once before very briefly but not Wynne. Wynne had a lot of questions about the other people there and what type of cancers they had and whether it was the same as mine. They of course, as they have done all along, took it all in stride. Steve brought the camera and snapped a shot of us.
My nurse also presented me with a certificate.

In the corner of the photo of us you can just see a bit of the beautiful quilt that was given to me through Victoria’s Quilts courtesy of a lovely woman from Lakefield who I have known through various connections…I was stunned when I received it. I have used it in the chemo suite ever since I received it in May. It really brightened up the chemo suite and Steve liked it as he always knew where I was as soon as he walked in! I will attempt to take a better photo and also post it on the Victoria Quilts website.

I also received a delivery of flowers from Steve’s parents the day after chemo which was a lovely surprise and many of the flowers are still going strong almost two weeks later!
Now that the chemo is done I can say that I truly feel fortunate that it wasn’t worse. I just couldn’t know how it was going to be at the end of the summer but really it didn’t get a whole lot worse…from midpoint on it was really the same. The hair thing is the most visible but I think it might be starting to come back some already…there is definitely lots of grey though!! Tomorrow will be the first day that I will be truly out of the chemo cycle so hopefully my body responds and starts recovering! Tomorrow will also be the first day that is all my own. Avery started back to school last Thursday but both Thursday and Friday were spent prepping for Wynne’s birthday. Her Humane Society party on Saturday seemed to be a success. Seeing the animals and touring the facility will be memorable for the kids I think!

I originally started this entry the day after chemo but just didn’t quite get back to it with school starting, finishing up painting the girls’ room and then Wynne’s birthday. I got most of the painting of the girls’ room done just before the 31st so that we could move the girls back into their room and my mum could use the guest room. However, the movement of toys and kid things has resulted in a massive scattering about the living room and guest room and I am trying hard to do some purging before moving everything back into their room! Too much stuff!! The room is now done though…. complete with new ceiling fan (Steve finished that yesterday) fairies and bunnies. I know this room theme may not last too too long but I had bought the wallies/border and the paint many (MANY!!) years ago so I just ran with it. The girls think it is so much better than plain off-white! I was thinking of painting a big tree in the corner but not so sure now. It only needs some finishing touches like curtains and a rug (green shag to look like grass??). Maybe I’ll post some pics when the finishing touches are done (and the room is tidy for maybe a few minutes.)
So I feel like this week is my week to get some organization back into our lives. I will likely start doing a bit of work this month but will be easing into it and taking a bit of time for myself too…especially since I don’t quite know what the next few months will bring.

Just One More to Go!

I had hoped to post on Monday night but just couldn't get it done....on the eve of my second last treatment I found myself suddenly in a huge hurry for this to end. This was readily apparent to me Monday morning as I walked around the hospital killing time between my blood draw and oncologist appointment.

I do feel badly for not writing more sooner (blogging is such a responsibility!) but we finally took some vacation and got away for a bit. We got back late Sunday night from a whirlwind tour of eastern Ontario cottage country. Fri-Tues at Buck Lake (Steve’s brother’s) , Lakefield for three nights and then north of Bancroft at Su’s cottage on Cross Lake. We feel very fortunate that we have friends and family with cottages to share with us. We had a lovely relaxing week and the girls essentially learned to swim over the course of the week.

I also got in to see my Grandma in Ptbo at the senior care residence she got into in March. The timing of this couldn’t have been better for my mum as she had been with my parents for the last 5 years and it was getting a bit too much for my mum and then she got the call that my grandma got in around the same time I was diagnosed. This allowed mum to easily come up and be with us for several of my treatment weeks. It would have otherwise not been possible as my grandma could not be left alone, even with my dad. We had a lovely visit and she did after a few questions remember who I was when she looked at me. She is now 92 and has vascular dementia so her short term memory is well....very short at times. I can’t help but think that my lack of eyebrows and big blue hat threw her off a bit in recognizing me at first. My mum had told her the week before what was going on with me but she didn't remember when we were there so all in all it was quite a pleasant visit!

So just one more to go..Aug 31st. Two weeks from now I will be in my last week of recovering from chemo. I was afraid that the end of the summer would gradually get worse for me after each treatment but I feel very fortunate...it does not seem to have gotten much worse. Steve shaved the remainder of wispy hair off for me this morning. I wanted to start fresh and have it all come back the same length. We didn't take it right down to nothing...we may still need to do a bit of trimming. It was a bit quick. Steve is off work this week so he is taking good care of me. We decided to try without any visitors for this week. One major reason is that the guest room is stuffed with kid's stuff (and the kids). I emptied their room about 3 weeks ago to paint it and it hasn't quite got finished yet. Next week's project. When my dad was here 2 weeks ago he slept on a bed in the living room! I better get to it!

So the next steps are CTscan on September 13th, follow up appointment with oncologist September 27th and then the PET scan in mid October. They like to wait about 6-8 weeks after treatment ends to do the PET scan as there is a higher rate of false positives if done too early. So I won't have an all clear answer until almost the end of October it looks like. It will come quickly especially with school starting. And I have another birthday party to plan....Wynne's to be held Sept 11 at the KW Humane society...trying to go that route and start to minimize the whole gift thing by asking guests to bring donations of pet food or toys and maybe just a small token gift for Wynne...can't expect her to go cold turkey after all...she is only turning 7! Baby steps! The best thing is I don't have to clean up the house and they handle all the activities (we still bring the food).

I know there was more I wanted to write but right now I'm just glad to get something here and let you know how well I am doing. I do feel so fortunate....now let's just hope that the chemo has done its job completely and thoroughly!

Feeling Positive

I am feeling like I can do this. I knew I could and so did all of you (as many of you communicated to me) but now that I am approaching treatment #8 of 12 I am feeling like I can see the end of treatment. I also feel quite positive because I have been feeling pretty good this last 2 weeks. It was better than #5 and I have been able to do a number of things (Avery's party, impressive cake for her

neighbour party, Canada Day, went to the zoo Friday with the cousins, bought golf clubs..yes really) and sometimes things seem almost normal!

Here is a pic of Ave's cake...she wanted a castle but also wanted a Tiara on it.

Maybe the ativan (sedative taken morning of) helped last time. Hopefully tomorrow will be as good....I am hopeful. I just slept through treatment most of last time so have decided that I am not good company and Steve will likely just drop by right at the end to take me home. I do however have a very tough time talking about it and even writing....so mostly I just try not to think about it.

I had my appointment with the oncologist two weeks ago and she discussed the results of the CT and gallium scans I had done about a month ago. Things look good. My gallium scan was clear and the CT scan really only showed two enlarged nodes in my neck with is a big improvement and indicated that I have responded well to the chemo. The goal is for these two nodes to be less than 2 cm after treatment (they are about 2.3 cm now) and the PET scan to be clear, then radiation won't likely be necessary. She also indicated that the affected nodes may not return to normal size as Hodgkin's usually results in some scar tissue on the nodes. I can still notice a bit on the right side of my chin but it's nothing compared to what it was in March.

My hair is wispy and pretty short....my scalp is now visible and I am mostly sticking to bandannas. I haven't pursued a wig yet and maybe won't bother since a wig might be pretty uncomfortable in the warm weather. I do long to take off my bandanna at the end of each day...the girls have grown accustomed to my head....not so sure if Steve has :) My eyebrows and lashes are getting thinner too and I certainly don't need to shave my legs much..bonus! Generally people who see me that haven't seen me in a while are surprised at how good I look...I don't look sick and have good colour.

The girls are now on summer holiday and I am too. I am sort of officially off work until October 1st but will likely still do a few hours as necessary just to keep some of my projects going. My plan is to spend some great quality summer time with the girls (and Steve of course). I have a few things planned like swimming lessons and dance camp. Wynne will also start gymnastics 3 times a week tomorrow but otherwise I am going to make time just to take it easy. We have vacation scheduled for the week of August 9th. We are going to head to Kingston, Lakefield and Bancroft (Su's cottage).

I have decided not to do our annual XCIV canoe trip. As Steve indicated to his bro and sis-in-law when we were discussing it, we really need both of us with all pistons firing to portage the canoe, gear and kids and if I developed a temperature while we were out I would be about 4-5 hrs from the hospital....so we likely won't take the chance. Hopefully some of you will decide to go without us!

So granny and grampa are here now and I am headed in for treatment #8 tomorrow. Hope these positive feelings continue!

Why are my children still up?

Our clocks are now officially all messed up. The girls were up until almost 10pm last night (or later??)...not sure why exactly. Had something to do with with me changing all the sheets and looking for a missing dinosaur pillowcase which I never did find. Avery actually didn't care...it was me trying to keep matching stuff together, the 5% (Steve may argue more)of my personality that is obsessive/compulsive about stupid things. So the girls were both at school today and when they came home they didn't seem too bad....then they watched TV...not just any TV, a DVD of Giselle,/Sleeping Beauty with Nureyev....real ballet. They both got into their full dance recital costumes and then...


Well I was busy researching how we can facilitate the conversion of my dad's vinyl to MP3 for his birthday (using our existing equipment on hand)...I was engrossed so I let them sleep. It was some 'me' time. Usually I fall asleep putting them to bed and that's the end of my night unless I read for a bit after I drag my sleep self to my own bed.

So Steve's at an open house and gets back sometime between 8:30 and 9pm and Avery has just woken up (Wynne is still dozing) and I am just feeding Avery dinner...crazy. What kind of mum am I? Well they are in bed but not asleep. We will try to get them back on a normal schedule tomorrow. Naps just don't work at almost 5 and 7.

So I may have figured out the vinyl to MP3 thing. I have it sort of working using cassettes and Audacity, although the sound quality is a bit dicey still; now I just need a good turntable with an audio output and my dad needs a bunch of time to do this while he visits us! (Mum....don't tell dad yet...dad will have to bring a bunch of his favourite vinyl with him when he comes next week and his MP3 player).

This week has been okay but I feel like the effects of chemo are dragging on longer and longer. This is basically what I expected. I had small waves of nausea all weekend but I felt pretty good today (although headaches seem to also come and go regularly). Just in time for next Tuesday (next chemo day on June 22nd)! I have my little window to get things organized, tidy up the house, and finish planning Avery's birthday party (thurs). Luckily we took the easy option this year and so we are are having the party at Bingeman Funworx. All I have to do are the loot bags (which do include a few homemade items which I have yet to do!). It's not a birthday party unless I am staying up late making something! At least I don't have to clean the house too!

So I'm hanging in there and still looking for more books recs (Thanks Kanchan...I'm checking them out). I finished "the Girl Who Played with Fire" last night and stayed up way too late the night before trying to finish it and finally relented and save the last 40 pages for last night. Since I'm in between books I should get to sleep within the next half hour or so...so goodnight!!

HALFWAY and Jenn's Recent Book List

Had chemo this morning, CTscan yesterday and gallium scan on Friday and now I am officially half way. We all know how the summer just flies by so this year I hope it does (sorry...hopefully it goes nice and slow for the rest of you!!!!)

Felt crappy today and still have the chemo hangover but it wasn't as bad as last time. They did give me ativan pre-chemo to sedate me and handle my anxiety and I think it helped but it totally zoned me out. The rattail hair is also gone and now if I don't put it into some sort of tiny pony-tail I wake up with a rat's nest now. I am still resisting cutting it all off but it may come to that!

So now for something a bit lighter that I drafted up last week!

I have been reading a lot more the last many months. Steve got me a Sony Reader at Christmastime and I have gone through quite a few books on it and in print since then. I have really enjoyed the books I've read recently and I want to at least share my recent reading list.....since with the e-reader I can no longer share the actual books (the only drawback I see thus far)!! Someday I am going to do the book club thing...maybe this year. I have a small list of possible people that have also expressed interest...let me know if you might be one of them!

Jenn's Book List since around Christmas in no particular order except what comes out my head:
Pride and Prejudice (Jane Austen) - this was my free book on the reader and it was my test to see whether I truly wanted to keep the reader...I had my doubts at first. I figured if I could get into it on the reader I could read anything on it.
Queen of Swords (Sara Donati) - 4th in a series I started about 10 yrs ago
Lovely Bones - yes...although the subject matter is difficult I loved the book.
Secret Daughter - lovely story that jumped between india and america
The Disappeared - a love story - Cambodia and Montreal in the 70's, also difficult subject matter and narrative a bit odd but I couldn't put it down
Water for Elephants - made me want to go to the circus, although the animal thing is a bit touchy
The Host (Stefanie Meyer and the 2nd time I read it) - came in a care basket from my Lakefield friends (thank-you Vikki) and contained a chapter not in the first edition. I started to read the new chapter but couldn't remember enough details so I read it all again and enjoyed it almost as much the 2nd time - crazy!
Midnight Sun - Stefanie Meyer partial web edition (i.e Twilight from Edward's perspective). I re-read this because I could put it on my reader, had finished one book and there it was and once I started it for the second time I read the whole thing again...what can I say, I liked the Twilight Saga and read it twice too! I do have a slightly juvenile taste when it comes to certain books!
Love the One Your With - Emily Giffin - a hand me over from Jess - nice story
Time Traveller's Wife - loved it and got the movie for Valentine's Day
Still Life with Chickens - another nice story - a simple memoire of starting over by the sea with chickens
The Help - Kathyrn Stockett - finished last night and really enjoyed the reading but would have liked a bit more at the end - still loved it though!

And since I wrote this last week I am about to finish:

The Girl with the Dragon Tattoo - this is not my usual type of pick (mystery) and it took a bit longer for me to get into it but I am definitely going to go on to his next two books.

I think there are a few more but they don't come to mind. I am not a choosy reader. I can read almost anything and get something positive out of it. There are two books I did not succeed with recently. Tried Bram Stoker's Dracula on the reader (free e-book) but I apparently lost interest and went on to something else and a Jane Urquart book that I picked up years ago and tried for the 2nd time unsuccessfully....Changing Heaven I think.
A note to anyone considering an e-reader. Some of the free e-books classics that are out there are awful - have not been properly converted and are almost illegible - not sure why but I'm sure they will improve!

So what I am really getting at with all this book stuff is let me know what you are reading! I need recomendations and it's better if they aren't too new or else the e-book is pricier! I like Heather's List on the indigo site. I also like to check out other people's reviews on the web...I should likely contribute some of my own reviews at some point!! So send me your book pics!

By for now and I will try and post next week sometime!!

Jenn%)

It's so chilly tonight!

This is so so unfair. I just spent a long time writing and then editing my post and I hit publish and it disappeared!! Agh!!!! Why didn't I save!!!!!! I thought this thing had autosave.

Okay so I will try again from memory. Luckily I read it through a lot....but it just won't be the same.

Yes it is finally cool again and I am actually cold but I loathe to close the windows until the house cools down completely.
So long time no write. I was waiting to feel inspired (and didn't want to write the same stuff, treatment okay, hair still hanging in there etc) but subconsciously I was possibly avoiding it a bit because thinking and writing about chemo actually makes me feel a bit nauseous. There is a name for this: "anticipatory nausea" and I have it. I get it thinking about the chemo suite or the hospital and it hits me and I have to turn my brain off. The chemo nurse suggested a prescription for Ativan to help with it...she actually said I might want to take it if I am having a weepy day! Sounds addictive.....I haven't had any weepy days and if I get it I think I will stick to using it for chemo days only.

This last chemo day was definitely the worst yet. Had my appointment with the Onc too. Everything was a bit behind because of the holiday Monday. I was told that getting there early for my blood draw would not have helped as the early birds (read seniors) were there by 7:30am even though GRRCC doesn't open until 8am. I of course was late. So I had the blood draw (and felt nauseous starting then) and then my appointment with the oncologist. They have officially put me as a Stage III (above and below the diaphragm). The radiologist that reviewed my CTscan decided that the questionable nodes in my back were likely involved as was my Thymus gland (it was too large for someone my age...it shrinks as you age and is largest when you are 7yrs old..didn't know anything about the thymus...fascinating really). This does not change anything. The plan is still to go ahead with 6 cycles (12 treatments) which is what my oncologist had decided due to the bulkiness of my disease (i.e. swollen face which is now mostly gone).

I had a visitor for this treatment. My friend Andrea who recently decided to quit her engineering job and go back to school for psychology, came to hang out with me and analyze my personality. We got part way through a personality test but I didn't quite make it though all 144 questions. (Thanks Andrea for keeping me company and we have to finish so you can see if your hunches about my personality are correct!). It sure took my mind off stuff while there! I actually asked for a bucket during chemo this time (and Andrea discretely moved her brand new MAC laptop far away from me...she was showing me Vietnam photos!). Luckily I didn't need the bucket but man was it was so much more intense this time. (BTW I have MAC envy thanks to you Andrea!). So when I got home I was starving and maybe ate a bit too much....that afternoon and evening was rougher than it has ever been (without getting into the gory details!). The next few days weren't too, too bad though. I actually made it to Avery's class trip to Yee-Haw Adventure farm on Friday and got to see climbing goats, a crazy border collie and made Avery very happy to have me there! YEE-HAW! It was a hot day and I was whooped when I got home.

So my hair.....as I said it's still hangin in there but I officially (in my opinion) need to cover my head when I go out. I have hair to cover my head and bangs (which I created a few weeks ago) and a rat-tail. Really....if I braided the long hair that is left it would look exactly like a rat-tail...not quite the look I was going for. I went to a MOE training session in Toronto for work on Monday and tried a scarf for the day. It kept slipping back a bit and I had to keep tugging and adjusting. My colleague Katherine suggested a hair band under the scarf to keep it in place...what a great idea I think it will work perfectly!! So for now I am making do with what I've got and haven't gone down the wig route yet! I feel pretty lucky to have made it almost halfway with this much hair. Next week at this time I will be half way done!

So right now I am radioactive. I had my gallium (isotope) injection yesterday and then I have the scan on Friday (2-3 hrs on my back listening to my ipod..not bad). I also have a CTscan on Monday (I just now remembered the awful stuff I have to drink for that...hope I can handle it this time). This is the progress check to see how things are doing. I should have all the results by the next time I have my appointment with the Onc on June 21st. They will do all this again after the last treatment along with a PET scan. From there they will decide whether to do radiation treatments too.

So other than that not too much happening here. We are getting busy with the girls' soccer on Saturday mornings so won't be traveling much until August. I'm planning Avery's b-day party for the end of June. She wants to have it at Bingeman's Funworx....so it's pretty easy...no room for much creativity at all though! I guess this is a good year to keep it simple :) The girls have their end of year dance show on Monday...Beauty and the Beast.

A huge thank you to Granny and Grampa Allen for making this past week possible. (The girls miss you more, the more time they get to spend with you!!). My mum comes next week for my next treatment. The girls are certainly getting lots of grandparent attention...very nice...it's the silver lining of all this as Granny Ann has pointed out :)

One Third Complete; 8 more to go!

Chemo #4 (Cycle 2B complete!) I have to say that during chemo was the most unpleasant so far. After the pre-med Benadryl that wipes me out, I just didn't recover and felt pretty crappy until I got home around 1pm. Then it got better. Hung out on the couch watching Pride and Prejudice (all 4 hrs!! a gift from my mum and I just had to watch it all ....Colin Firth as Mr. Darcy is just so..well you know Colin Firth!!). I probably should have been sleeping but I just didn't fall asleep and maybe that's a good thing as I woke up at 4 or 5 am that night and couldn't get back to sleep.

Went to my 1 hr UW well-fit class today (a special program for people going through chemo run by the kinesiology dept) and actually beat the pace bike on my 20 min ride....I thought I was behind the whole way but it turned out I was ahead...that may explain it! Day 2 after chemo has always been okay I guess. My well-fit classes are Wed and Fri at 10:30am and are free for 12 weeks. They have tailored a program for me and monitor my heart rate the whole time. I'm hoping that it will help with my energy levels and you know just get me out and it's a small group and everyone is undergoing chemo so they are pretty meticulous about keeping the equipment clean and not letting sick people in. It's always easier to motivate yourself when you have an appointment. Once I got diagnosed in March I just stopped going to Goodlife...not sure why, I just got a bit unmotivated I guess and my normal schedule just disappeared because of appts etc.

I now think I know what may be hardest as the summer progresses; the psychological aspect of actually getting myself to chemo. I am already having these moments where thinking of sitting in the chair/bed and getting the stuff injected makes me feel sick just thinking about it, even if I feel just fine at that moment. I just have to focus on the fact that this is what will make me better! I can do this!

My hair is still hanging in there (as Steve likes to say). I would say it is about 1/4 thick as it use to be and kind of wispy....but it still covers my head! I have been wearing hats more often as I just can't do anything with it. I cut myself some bangs today so I had more hair around my face. The one thing I have noticed about day 2 after chemo is I wake up looking like I have a sunburn and a bit puffy and then it eventually dissipates throughout the day. So this morning my face needed help...thus the bangs :)

Thanks for all the birthday wishes...I had a lovely quiet birthday dinner with Steve (he made Pad Thai and a lovely chocolate cake with coffee icing), the girls and my mum. Steve and I also went out for dinner on Saturday to Bhima's....sooo soo yummy south-east asian food. We took the bus...yes really...and had a bottle of wine. For those of you who know Bhima's Warung....you know exactly how great it is. I have never had a meal I didn't love. I sort of overdid it and ate too much and regretted it a bit later. I just can't handle large meals very well right now.
Well off to bed...hopefully the exercise today will help me sleep better tonight!

Chemo #3 (Cycle #2A)

Day 3 of Cycle 2A and I'm feeling not so bad. I really think coming down with the cold last time made it much worse. Day of chemo as was as expected...sort of like a terrible hangover without the feelings of self-stupidity! So they used the port for the first time and this seemed to make it all go a it quicker and no funny vein spasms. Using the port also means I feel the effects much quicker. The Benadryl (pre-chemo meds) through the port was almost instant head spins and wooziness.....can barely keep an intelligible thought for a little bit and have trouble putting sentences together! It is pretty short-lived and by the time the 4 chemo drugs are in me I just feel tired and headachey.

I chatted with a few other patients this week. It's sort of like being on a plane on your own. It's nice to have a little conversation with your neighbour but then you don't want to feel compelled to keep up the conversation the whole time....especially if you just want to close your eyes. Heard about the "Cottage Dreams" program where people have donated a week of their cottage time to cancer patients who have completed their treatment. Interesting concept but I doubt we would do it as: 1) Steve's bro has a cottage we can use and 2) dogs aren't allowed :( Saffron would be sooo hurt!

Another interesting observation from my time in the chemo suite this week, there was a man who I believe was on his last and 12th ABVD treatment and he still had his hair!! His family (8 and 10 yr old sons) was there to see what dad had been through and how it all worked. We had thought that we may bring the girls to see in the summer when they are out of school. We'll see.

So my dad is here and has been dinner cooker for the last several nights and took Wynne to gymnastics on Tuesday. Steve had another open house last night so it's been great having him here. Today I had a follow up doppler ultrasound on my left arm. It feels pretty normal now so it must have just been some sort of vein irritation from the chemo into my arm. Hopefully it won't come back now that the port is being used.

Have had a few waves of nauseousness today and felt pretty wiped out this aft so I did have a nap. Hopefully tomorrow will just be more of the same or better!

On the lice front we have continued to wage war on them all week. Wynne passed the inspection at school on Monday but Avery didn't and I had to bring her home and pick more nits all morning and then again that night in hopes that she would be okay for her next day of school on Wednesday....and yeah...she passed! Steve is now a master nit-picker....way better than me I think. We figured that between the two of us we likely pulled off well over 100 nits from Avery. We think she was likely ground zero! The school has a bit of an epidemic with it right now from what we hear. Wynne's best friend also had them and another girl in Wynne's class got sent home....I think they should check Avery's class a little more closely! Avery announced after school on Wednesday that she told EVERYONE she had lice....great...at least she's not self-conscious! Hopefully we will be all done with them by next week after we do a second treatment on Saturday to make sure we catch any that have escaped the first treatment!

My Little Window

So since about Wednesday I have felt pretty much my self again. So this is my little window of normalcy. Sort of. I did end up having a Doppler ultrasound and seeing my oncologist on Thursday as after several days of weird feelings in my left arm (the chemo side) I decided to mention it to my nurse on Wed and see what she thought...this turned into the ultrasound to check for blood clots...they don't take any chances. It's a hard feeling to describe...a sort of weakness and achy discomfort from my shoulder to the tips of my fingers. Definitely worst at night especially at 3am when it wakes you up and you wonder if you are having a heart attack! So they said I was right to mention it. So the conclusion is no apparent sign of blood clots (whew!) and no real explanation (a perplexed look from my oncologist). Possibly some vein irritation /inflammation from the Dacarbazine? If it is still there next week they will do a follow-up ultrasound that has already been scheduled for Thursday.

So these few days of feeling good before Tuesday when I have my next chemo, have been fairly relaxing...just trying to do some catch-up around the house...although my catch-up got sidetracked into cleaning out our closet in our bedroom....I told my mum it must be a sign of dealing with inner turmoil since I wanted to clean out a closet no one sees when the very visible living room toy area and dining room are a complete disaster!! Ah well. So part way through this late yesterday afternoon, Avery gets up from an unplanned nap (great for those nice early bedtimes!) and complains that her head is itchy. Well I probably would not have thought much of it except that morning I had been examining my thinning hair and pulled a small dark thing out with a piece of hair. I carefully examined it and decided it might be a dead hair follicle.....now I gave this a second thought!! So I sat her down under the bright lights in the bathroom and started sifting through her hair. Lo and behold I found nits!! AAAGGGGGHHHH! I would not have known what I was looking for as we have...very luckily...been spared from this so far (even though the "Lice has been found on a child in your child's class" info sheet has come home on a semi-regular basis since Wynne started JK). However, I had the extra special opportunity of watching someone else nit-pick through a little girl's hair at Wynne's Sparks camp last June. One unfortunate girl had been sent home after the mandatory lice inspection......came back later that night supposedly treated and left by her grandparents only for the nit experienced leader to find many more nits and even a live one in her hair. So lucky me....I now knew what to look for. I figured that was one piece of knowledge that may just come in handy some day! So Avery had headlice.....check the also semi-napping on the couch Wynne....found a LIVE one!!! Off to Shopper's....bought the more expensive non-pyrethrin based stuff the pharmacist recommended and tried VERY hard not to scratch my head while in the store and definitely not while at the cash where the checkout girl reached for her head as she looked at the box and then (really!) did a quick head scratch and promptly stopped. Lovely...I'm contaminated even more now! So the evening was spent stripping beds, bagging toys and other things, applying solution to ALL of our heads (the result of Avery and sometimes Wynne regularly sneaking into our bed at night)....none of us were spared. The girls didn't get to bed until almost 11pm...good thing they napped. Today (and every day for the next 2 weeks) we have to do more nit-picking and then repeat the treatment next Saturday. For you lice virgins out there, the treatment does not kill the eggs (only the live ones) and these are glued to the hair shaft.

So I actually considered cutting my hair all off right then and there but Steve wasn't up for it. He wasn't ready to give up on my hair quite yet...maybe by the end of the week it'll be gone anyways and I won't have to re-treat! Avery has wanted her hair cut up to her shoulders so I DID that before we treated which will make the nit-picking easier and meant not needing as much expensive solution. We will have to take her to First Choice to get it tidied up I'm afraid....it's not too bad but a little shaggy at the back. She loves it though!!

So my little window has now been filled with nit-picking! Some of you may be wondering what I have done work wise. Since I was already on part-time/flex I didn't really need to do much. I have been trying to wrap up a few of my projects but have been finding it tough with appts and everything else. Luckily it is for a relatively laid back and otherwise busy with other things client. I will still do a few hours here and there and then try and made a clean leave-of-absence break for the summer so I don't feel like I have to check my work e-mail as frequently. Actually I have found it really tough to keep focused on work. It just doesn't seem that important right now and I just don't want extra stress in my life. I may be able to collect 15 weeks of EI for sick leave but it won't be much with my part-time hours....at least it would be something. Things will be tighter but we'll be fine.

So that's my week...pretty good compared to how I felt last Sunday and.....my cold did go away by Monday morning! I was very pleased and kind of amazed! I went to a "Look Good Feel Better" workshop on Tuesday. I had fun but when I came home all made up (the focus is tips for keeping up your appearance during cancer treatment if you are not familiar with it) I had mixed reviews. The girls thought I looked pretty.....they are such girly-girls and just love make-up...not sure where they got this from....not me! Steve on the other hand felt I didn't look like myself and wasn't so impressed :( The best tip was for drawing in eyebrows...hopefully I won't need that but now I am armed and ready. I got some great makeup tips and came home with a box of comestics and extras to play with. I have never really learned how to put on make-up so I really did learn a few things and maybe I can keep up appearance a bit better now and draw attention away from my lack of hair (or scarf, hat or wig??) and make my my eyes POP! :)

So appointments with the oncologist and bloodwork on Monday and chemo (using the now healed port) at 9am Tuesday morning. My dad is coming on Monday and will stay until Wynne's gymnastic "Springfest" show on Saturday and help take care of all of us this week :) I basically have family booked to come for the next 4 treatments. This is what the summer is going to look like! We feel so supported by friends and family!! Thank-you...thank-you...thank-you. I'm going to be saying this a lot.

General Malaise

This is how I have been feeling since chemo#2. On Thursday morning my nose started running on and off and then by Friday night it felt like a full on head cold...no temperature luckily. My fear is of course...how long is this cold going to last if I have a weak immune system!? 6 months!!? I hope not. I think I would be feeling pretty good without the cold. I was feeling a lot more nauseasness (than last time) on day 3 (Thurs) and it sort of came in waves but nothing I felt I needed more drugs for (I do have another drug to take if needed). I have also noticed that I do best if I don't wait too long between snacks.

I have been doing more research into natural supplements...lots of conflicting info out there (of course!)....mostly whether you should take antioxidants or not in case they help the cancer cells too. I wanted to figure out any way to help boost my white blood cells (WBC) but the main recommendation (Polerga - pig spleen extract or peptide - ewww!) is super pricey and as with most natural supplements the scientific evidence is dicey. Often chemo patients are given neupogen or neulasta shots to help WBC counts (I haven't been) and I asked my oncologist about this at my last appt and she indiciated that recent (last several years) it has been found that these shots increase the lung toxicity effects of the Bleomycin (the B in ABVD) and therefore are not being used for cancer patients taking Bleomycin....so I guess it's just up to my own bone marrow to get busy! Now to kick this cold!

My hair is thinning. I don't think I will be saved from this particular side-effect. I can take out small fingerfuls if I run my hand through my hair.....not crazy but definitely NOT normal daily hair loss. I think I am prepared..if not particularly happy about this particular aspect of the chemo. It's just hair...it'll come back! Also I keep hearing that it may come back different at first...curly or darker (please less grey!). That would be weird!

Once again thanks to all of the kind words of support I've received this week. It is truly, truly, appreciated. I do apologize for dropping this on some of you while at work and distracting you from your tasks at hand! No reading blogs while at work!! :)

Treatment #2 (Cycle 1B)

So in for bloodwork at 8:20am yesterday and chemo at 9:50am. It was all a bit delayed because the bloodwork results were late and when they did arrive my white blood cell count was below the normal go ahead so they paged my oncologist to get the go ahead and she said do it anyways...so I must be extra careful to not expose my self to sick people or infection of any kind because my immune system is already pretty wiped out. They couldn't use the port yet, still a bit tender and what a lovely bruise! No low cut shirts for a little while I guess ;-)

So they managed to find a co-operative vein near my left wrist. The pre-meds which includes Benadryl (for my lungs) totally spun me out. Otherwise it went as planned. Steve brought me lunch and hung out with me at the end and took me home and I was home by just after 2:30pm. Lots of people come and go in the Chemo Suite (in the Grand River Regional Cancer Centre or GRRCC). There are two big rooms full of beds and recliners. Both times it has been pretty full....mostly seniors...so I can't help but feel a bit tragic usually being one of the youngest there. There are a few other younger people. I saw a brand new mum with babe in arms...I'm pretty sure she was there to be treated not just visiting. Now that I can't imagine.

So far it has been about the same as the last treatment. I was totally wiped yesterday when I got home and slept for several hours. Thought I would get to blogging right away....but there was NO way. By the evening I was feeling pretty normal again. Today has been pretty good. I totally took it easy and tried to catch up on some long overdue e-mails (as many of you found out). Steve's parents are here and it has been fantastic having them...we realized when my mum was here last time how essential the help is around chemo day. Just to do dinner and get Wynne from the bus, take Wynne to gymnastics, Avery to the park etc. Today Steve's mum has dinner all ready and they took the girls to the library after school. Especially great as Steve had another open house tonight (3 Weds in a row!).
We have had so many generous offers of help. Thank-you all so much for your offers and positive thoughts....we just don't know what the next few months will bring! I've realized how so many of our friends are really very positive people. We have had family here for us thus far. My dad plans to come for the next chemo day on April 27th. Hopefully I will still have hair in another 2 weeks! :) Staying positive,
Jenn%)

Porta-Cath Insertion

So today was my port insertion. I had to be at the hospital at 7:15am (no breakfast :() to register (even though the nurse's station I then had to report to didn't open until 7:30am) and had stayed out later than planned the night before having dinner with friends (and breaking the news).

They of course had to take MORE blood today (they didn't test for all the things they needed today on Tuesday when I gave blood...of course). The right arm was unsuccessful today so she drew from just above my right knuckle! Argh! This port should make all of this a bit easier! So I was prepped for the insertion which actually considered minor day surgery. I was given a sedative to relax me...very good! Prep...like surgery, 3 nurses and the radiologist doing the insertion. The nurse showed me what a port looked like..sort of amond sized with a tube that is inserted into a major vein in my chest. The top of the port has a 1cm dia membrane that needles can be inserted and this is all under the skin so it will just be one little prick to access it.

The whole surgery was weird because I was awake but well frozen...but I could feel all the tugging. Just near the end before suturing I had a pretty weird experience...I think my body was considering shutting down (I had something a bit similar with the biopsy in February)....the room started to spin and disappear and then tears started streaming down my face! I did not see that coming! It's not like I was sad..it was a physical reaction! I had been chatting with the nurses. They were all really nice and I think tried to keep me chatting to keep my mind off of what was going on. I told them that if/when I lost my hair I was hoping it wouldn't come back grey! They thought that was pretty funny (and said wasn't I too young to have grey hair...I wish). They were also all very interested to hear what I did for a living....assessing risk of people getting cancer from contaminated sites...ironic eh! I came out of there feeling pretty peaceful actually....partly because everyone was so nice. Gobbled down my snacks and juice and then had a nap until Steve picked me up.

At home I slept most of the afternoon...I was pretty groggy. I feel okay now but am guessing might feel a bit sore later. The dressing is huge! It is also a pressure bandage so I can't turn my head because of it and still have pinky prep stuff all over my neck. The made 2 incisions to put it in the port, one on my neck and one on my chest. I am supposed to have the dressings on for about a week and they may not be able to use it for Chemo this Tuesday :( We'll see I guess.

So far...not too, too bad

So day 6 since chemo on Tuesday and I am feeling not too bad. Still seem to get tired quickly and I seem to be more winded going up the stairs (especially carrying a sleeping 4 yr old!). A few weird aches and twinges... but okay. I am hoping that the 2nd week of the cycles will be better however I am anticipating that it may get worse later on as the chemo takes more of a hold. The neatest thing is that the swollen nodes on my neck (or tumour that is) has already gone down noticeably. They said it would be fast. I am not as self-conscious already. This is good if my hair does fall out since my face won't look as puffy! My hair is feeling a bit weird and dry to me and I am totally paranoid about brushing it.

So although I don't have my next chemo until Apr 13th I still have to go into the hospital 3 times this week! Tuesday to give MORE blood so they can check electrolyte and potassium levels (while the tumours are breaking down fast) and on Thursday (at 7am or something crazy) to get a porta-cath put in and on Friday to meet with my oncologist (to see how I have coped and check on side-effects). The port will save my veins some trauma...I have a lovely bruise from the chemo injection already. The port will be implanted under the skin and go into a major vein....I have been told that it will just look like a button. They will use this for most injections from now on.

We have now spoken with the girls....we sat them down last weekend. They took it in stride. The C word doesn't mean the same thing to them as it does to everyone else. The hair thing is what worries them most I think. They might be a bit sad that mummy will be more tired than usual and might not be able to do as much with them as normal. Basically what they understand is that mummy needs many months of strong medicine to make her better again.

My mum was here most of this past week and it was a big help and great to have her visit...hugs to mum!!

And so it starts

First day of chemo on Tuesday. It all progressed very quickly since my appt last Friday (compared to the rest of the process). I was told the first treatment might not be too bad. So far so good. I was really tired when I got home on Tuesday and napped on the couch. It all started at 8am on Tuesday with the bone marrow biopsy....what fun. Apparently my bone marrow "liquid" was not co-operative after my Dr tried 3 times to get some. She let it go because she got a good marrow core sample anyways. Had the talk with the pharmacist about all the possible side effects of the many drugs. 4 chemo drugs (A.B.V.D), 2 prescription that I took 1st thing that day (1 for nausea and allopurinol to help flush dead cells out to prevent gout) and then I found out that I would get another 3 in an IV just prior to the chemo drugs (benadryl, hydrocortisone and another anti-nausea drug)....that a total of 9 new toxic substances in my system on Tuesday!
So the plan right now is 6 cycles of ABVD, that is equal to about 6 months of chemo. Every other Tuesday will be my chemo day. Yesterday I had a MUGA test (heart function)...for a before picture as one of the chemo drugs is hard on your heart. Next Thursday I am scheduled to have a porta-cath put in so they don't have to inject into an arm vein each time. I see the oncologist again next Friday to check in before the next chemo day and see what sort of side effects I have had. She will also have a better idea of my staging we hope and have the results of the bone marrow biopsy. The Dr thinks I am likely somewhere between a II and III but the CTscan wasn't clear and she wanted to consult further with the radiologist. Some nodes around my back may have been involved?

Yesterday (day 2) I was suprised how good I felt. I actually walked a bit much (walked Saffy in park, walked home from hospital and then over to the office and Shopper's) and was pretty wiped by late in the afternoon. I felt a bit crappy when I woke up this morning (day 3) but not so bad now. Vikki the pharmacist said that day 3 and 4 are sometimes the worst for people. We'll see.

I'm that person

As I tell people what's going on with me I know there are a few who have had friends or family go through it (i.e. chemo and the whole nine yards) but most I am finding are just like I was....arm's length from it and never had a close friend or family or anyone they see regularily (luckily) have to experience it. I didn't know that much about the whole process and most people I tell don't either. The diagnosis, the staging etc. I didn't even know how chemo worked...the drugs target fast growing cells which unfortunenately includes hair, nails and many cell in our mouths. I just never knew. Now for many of my friends who have always been at arm's length or further from anyone going through the big "C"....I am now that person. The person they know and that they will learn more about it....and hopefully NEVER have to deal with it themselves. Statistically I hope I've helped them out with that. Although my girls are still young enough that they won't hopefully remember a lot about this time in our lives, they will always be aware of what their mum went through and never be at arm's length.

Just had the CT scan. Fun day of drinking yucky liquids, waiting and having unco-operative veins. They put the I.V in the back of my right hand today. Not quite as comfy but not as bad as I thought it would be.

It's curious how people re-enter your life. In the last few weeks I've reconnected with/run into several people I haven't spoken to in some time (or years). Not that I told them what was going on with me, except for one who I saw in the hospital, but these are all positive people that I have always liked. I must be having some magnetic effect drawing the positive vibes I want towards me...kinda flaky but it's really kind of weird too!

Gallium Scan

So had a gallium scan this morning. 2-1/2 hrs flat on my back. I was injected with the radioactive isotope gallium last Thursday and today they took pictures. I was able to listen to my ipod most of the time. The pod liked The Hip this morning (and is still loving them a bit much right now). I had it on shuffle which was putting me at its mercy as I couldn't move to skip songs :) The best song it played during the scan was Violent Femmes, Add it Up.....seemed appropriate as the machine spun around me taking picture slices of my body. CT scan tomorrow. Won't be as long as today though. The CT scan with the gallium scan will give a more complete picture (comparable to a PET scan) and will be used to stage it and will be the "before" picture once treatment starts.

Objectives:

So if you want to know how I got here...read my first post. My intention is NOT to make the Canadian Health Care system look slow. The waiting has been a bit frustrating but I certainly don't feel "mistreated" in any way. I am not venting in any way. I am sharing my experience. I have people who want to know and this is the most efficient way for me to share. Not that I want to miss out on face to face interaction....that's just not totally realistic for me at this moment and I've have found that face to face is a bit emotionally draining at this point. I have been reclusive the last few weeks...no question about that. I think I will want to have something to look back on and realistically I don't think I have time to be writing in more than one place. One last reason I can think of for doing this....gathering positive vibes....send 'em my way...I'm suckin' them up.

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.