Really...still here...closure for now

Every so often it does concern me that someone who I don't see very often was following my blog for a bit and is now wondering how things are - given my reasons for starting blogging in the first place. I have wondered how I should end or mutate this blog into something that reflects what life is about now. I have just passed the two year mark (had a check-up last Thursday) for being "cancer free" and therefore for the next year my appts with my oncologist will be everty 4 months instead of 3 and then it will get upped to 6 months at the end of next year. A very good thing of course. Dr. MacCarron said that after two years marks a time that if "it" did come back people respond much better to treatment. Really - it kinda feels like none of it happened. Life is back to very much the same - stress of work and all the things I find myself saying yes to have set in. Okay this might be a particularily stressful few months for me but really - it was just a blip. That's what we kept saying to ourselves and that's now how it feels. So all is good and I think I should probably retire this and start something new! Happy Thanksgiving to all. Here's hoping I won't need to use this particular outlet anytime in the next....let's say forty....no fifty plus years!! Jenn%)

Update - Why Not

Since I haven't added anything to this since October....not sure if anyone will actually read this :) But thought it was time. It might have something to do with finally catching up on a friend's blog and feeling particularily introspective over the last few days....which might have something to do with the genre of books I got out of the library last week....but that's not what I am going to write about.

I did have an appointment with my oncologist last Tuesday. It was just a regular three month check-up and everything seems fine. I feel pretty good...if not kinda tired in the mornings. Part of me thinks that this is just due to habit. I have been in the habit of moving very slowly in the morning. Steve brings me coffee almost every morning...except usually once on the weekends when I make a point of bringing him coffee. Really I am quite spoiled and we have had the discussion whether this has turned into a habit that neither of us know whether or how to break!!

My blood work was normal. Dr. McCarron felt my nodes, did an general poke around and had no concerns. I did have a bit of a scare around Christmas time when we were all sick. One of the nodes in my neck seemed larger to me and Dr. MacCarron saw me right away the week before Christmas. She quickly attributed it to how sick I was and gave me some antibiotics as she thought my cough was very deep. She re-scheduled my port removal to Dec 29th (was originally scheduled before Christmas)and told me not to get excited..."your nodes are supposed to do that when you are sick". Easy for her to say! Well last week she agreed with me that that particular node seemed smaller than in Decimeber...certainly no bigger and that on my CTscan from September I did have some nodes that were likely going to remain larger than they were before. It is pretty typical to have some node "scarring" with Hodgkin's.

So I will see her again in about 3 months and they will likely do a chest xray to have a look around my thymus. Dr. McCarron is very selective in her use of CT scans nowadays due to the increased risk from the radiation levels (1 CT scan is about 100 times the radiation from a chest xray) so she depends more on how the patient is feeling. I find this a bit hard as I forget what normal feels like. I might think I feel normal but I'm just not sure of when I last felt "normal".

I do know that when they weighed me in on Tuesday it was a bit of a shock and I keep saying to myself..."if there was one benefit from all of this...why couldn't I have lost weight instead of gaining!!" Well I'm now tracking what I eat (on my new smartphone...yes really...there's an app for everything!) and I do eat more than I think. Good news is that since I have been keeping track I am already a few pounds lighter....water weight I'm sure but it's still encouraging.

So the port came out December 29th and the taking out was much easier than the going in. Only one incision and they basically just had to "yank" it out of the vein in my neck...and the vein healed itself. I still have a bit of a "ghost port" from the scar tissue. I am hoping that it will eventually disappear. I orginally was going to ask if I could keep my port as a souvenir...but I forgot at the time...they probably would have said no and really what am I going to do with it? Put it in a scrapbook? Is it really the type of memory I want?....yeah glad I didn't ask!

So I took a break in writing the above to go to my weekly Zumba class at the local community centre. I am enjoying it.....even if I am in a constant state of not knowing whether I am actually doing it well or flailing madly to keep up.....a bit of both I suspect!

So after eating a bowl of greens with balsamic blueberry dressing I might just get a bit more exercise in front of the TV - playing Kinect. The beach volleyball....I think.....is particularily good and I work up a real sweat! A lot of people have been asking if I have made any life changing habit changes. I really haven't. I guess I have been partly sold on the information that suggests that Hodgkin's has not been linked with diet or lifestyle, but I am more paranoid abou letting my immune system get weak and stress. I DO want to take better care of myself and get more exercise and I have switched from Timmy's double double to regular (to cut down my sugar some)and actually like it better! I would like to eat more vegetarian again but it is so hard with the kids (and Steve!)...they love their meat!

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!