Ha oli maka heke ho

Christmas Eve we ate turkey, lots of other yummy things and opened presents with the boys, Brandon, his girlfriend Jacqui and her kids Katie and Teddy.  It was a chance to just forget the noise and enjoy family and friends again.

Since then I've had a few tests to check my organs and if they will tolerate the chemo planned.  I changed my Maui flight to return the early morning of Jan 12 - my "pre-chemo" bloodwork and doctor appointment is at 9:45 so the transition from paradise to cancerland will be a bit harsh ;) I will start the two chemo drugs and herceptin infusion Jan 13 around 9 AM.

The pre-chemo tests show my heart is definitely not as good as a normal 40 year-old female starting breast cancer chemo would be - not surprising given the crap we've thrown at it from total body radiation in 1997, and three cycles of hard core chemo, as well as three transplants chemo.  It's just below the level that it would be a problem, so the cardioligist gave me a med to help protect it a bit as well as scheduled more heart MRIs throughout treatment to make sure the risk of heart failure doesn't outweigh the risk of the cancer returning.  Pending the results of the other tests which I am guessing will show some wear and tear but not as much as the heart, we are a go for chemo.  The question of IF I could do chemo was bigger than I realized, so now the idea that I start early and miss most of Maui is a bit less prominent - I'm just happy I'll get to proceed with chemo and get a week in paradise!

So getting my hair coloured and cut at the moment - I will only have it for another month likely so going a bit shorter for the transition.  And after a quiet New Year's tonight with Tashs and Talyn I'll finish my packing tomorrow and escape reality for a week...a wonderful way to start the year and soak in as much aloha energy as I can.

Ha oli maka heke ho to all of you and mahalo for all your love and support.

The Grinch

So this will be short but likely not so upbeat as I don't have a lot of energy left from the day.  The basic result of my oncology appointment is that the chemo part of this equation is a lot more important than I expected it to be - without it the risk of the cancer returning is about 50/50 so starting some solid chemo within 60 days of surgery is a must have.  Dr. Stewart knows my history and me personally very well, yet considering the risk and my vacation plans, allowed me to delay starting chemo but only to January 12...so I get one week in Maui.  Not what I wanted to hear or expected.

The fact that he was serious about it was more important to me as I had in my head that the chemo part of the equation was smaller, that it was really about a slim chance of recurrence, and that the drugs I would take would not be that toxic, and that I could do it while returning to work in February.  Also not true.  6 three-week cycles if I can handle it, 4 minimum, of 2 pretty solid agents (one I know very well from induction chemo 1997, 2002 and even 2006 when I only got 10 days in), during which time most people can't work, and a full year of Herceptin (an antibody that helps prevent recurrence when you have Her2 positive breast cancer) injections every three weeks (not so concerned about those).  My battled heart and other organs will be closely monitored as there is higher risk they will not enjoy another round with these agents, new and old, and my slightly open neck wound from the flesh eating disease skin graft may also cause some issues once my counts drop.  Oh yeah, and with no chance of a port inserted into my chest due to all the trauma it has endured, my hand veins may be the only way to get this stuff in me.

So I think maybe its the whole equation that I underestimated, not just the chemo part.  It seems like a calculus problem more when I thought maybe I was hoping for just a long division one. I probably should have waited to blog until tomorrow when I maybe have more ability to spin it positively. I feel like the Grinch now - ....apologies.  Please enjoy your holiday festivities, food and family immensely - it is the only gift I ask for for Christmas.

Crazy small cancer world.

Quick update - had a call from Tom Baker Monday to let me know my appointment date of Dec 22...so a bit longer wait than I expected but at least it will be done before the holiday break.  Other positives are that the breast oncologist I will see is actually also a hematologist and bone marrow doctor...I know him well from my leukemia journey and he knows my history very well.  Perfect scenario I think.  He also sits on the core committee of the Strategic Clinical Network that I volunteer on as a patient advisor.  Crazy small cancer world.

The other thing I am interpretting (maybe incorrectly) from the appointment date is that it is not super urgent that I get started on the treatment.  I know from my 17 year experience that nothing happens over the holidays, so I am guessing the earliest they would have me start chemo is early January.  I am hopeful that if it's okay to wait 2 weeks for the consult then it may be equally as okay to wait 2 weeks more from the earliest start time to fit Maui in.  Fingers crossed.

Still making progress on the healing front...3 weeks since surgery so I think I am on target.  Incisions are still covered in steri strips so hard to really know what it looks like but I see Dr. Graham in a week and will do a further assessment and take the strips off then.

Otherwise, I'm doing more and more normal things every day...even had a yummy breakfast after my early morning doctor appointment today (thx to Shelley for the idea)...thanks again for all your kindness.

T

Pathology in

Had a call yesterday that I could come in this morning to see Dr. Graham to discuss pathology results.  So the summary is Stage II invasive breast cancer - Grade III tumour,  no evidence of cancer in nodes removed.  This combined with some other pathologic details suggests chemo will likely be a next step and that I will be a candidate for herceptin treatment which would follow or go along side chemo for about a year.  Tom Baker breast oncology team will contact me with an appointment to discuss a treatment plan.  Likely hear from them within a week and hopefully the appointment will be before the holidays.  Incisions seem to be healing too. I'll see Dr. Graham in 2 weeks as well to check the incisions again.

I tried driving Tuesday night with success and yesterday drove myself to an appointment as well as to my "new" condo (ready in summer) mid-construction walkthrough.  That was pretty cool...seeing my place all framed and roughed in made it real so it gives me something wonderful to look forward to next summer once I'm done all this crap ;)  Last night I drove to my monthly documentary movie screening and enjoyed a normal night with friends.  That was a treat for sure.

Maui is still a maybe - Dr. Graham thinks it's quite possible it will work - maybe no surfing he said.  The bigger factor in that decision will be what the oncologist team's plan will look like and how that timing factors in.  It's unlikely I would start chemo until the new year, but I'm not sure if delaying it a couple of weeks will be appropriate...as usual, have to wait and see.

So for now, I have the go ahead to move more, get that range of motion back in my arms and chest, wait of course for another phone call and appointement date, and have some more normal days.  Perhaps a gingerbread latte will also be required.  Cheers.

Board games and patience

So any of you in Alberta would know that I've not posted because it's just been too cold for the past number of days ;)  Actually, I've been doing pretty well since the last post.  FYI we did get to the Keg last week and I enjoyed a helping of ribs to celebrate.  Had a slow start physically and emotionally last Thursday - ironically had very little sleep after the drains came out, with more healing needed to find a comfortable position to sleep in.  Emotionally I think the whirlwind of life changes in the past month smacked me across the face while I wasn't looking. Since then gradually have been getting better sleep, mentally stronger, and experiencing more range of motion.  

The boys slept over at mom and dad's Friday so we had some good fun playing board games and drinking hot chocolate, true healing activities when you have 2 fun boys making you laugh constantly.  I am lucky that my twin nephews love going to their Nana and Papa's so much...and they think Auntie Tricia is okay too (I never let them win anything on purpose).

I had a couple other visits from good friends, watched the Stampeders win the Grey Cup with mom and dad Sunday, and mom and I did the final steps for my condo sale (including a miraculous search and find mission for a broken light fixture in terrible road conditions) which closed today.  It's actually been pretty busy, with rests inserted as necessary.

No word yet on the pathology from my surgery.  I called this afternoon and apparently the pathologist is still working on it.  Once that's ready I'll meet with my surgeon and then get referred back to the Tom Baker for next steps.  He'll also check out how my incisions are healing and let me know what he thinks I can do for activity.  On my list of questions for him will no doubt be the likelihood of me heading to Maui in just about a month ;)

Having cancer multiple times over 17 years has built my reserve of patience fairly well.  While no one likes to do it, it's a bit like many sports.  You have to practice to get better at it.  Thanks everyone for your continued support - happy December :)

Drains out and move done!

Big day.  Move finished - moving guys came at 9 AM and finished 3 hours later....and remarkably contrary to weather forecasts, NO snow fell during their work!  I practically hid in a closet during the process, as I have a phobia of moving and hanging pictures (no kidding) and with my inability to lift more than 5 lbx. I was pretty useless anyway.  Mom and Dad did last minute handiwork to breakdown furniture into pieces and I was so relieved when we closed the door.  A couple more days until possession and then that big item is off the list.

Straight from my condo mom and I headed to the hospital to get my drains out :) :) :) A little discomfort and minutes later I was free... that will reduce my pain considerably going forward.  AND make showering and sleeping soooo much easier.  Just enjoy your shower tomorrow - we don't know how lucky we are to just be able to shampoo and cleanse with no issue!

Without drains, my physio continues to escalate now, to increase my range of motion and evenutally be able to drive etc.  My incisions are also still in healing mode, and any activiity will really help that process too.  Next big step will be follow up appointment with Dr. Graham likely next week to go over pathology results and connect with the oncology team about whatever else I need to do.

But for now, another important phase done.  Move - check. Drains - check.  Combined with one week since surgery and 17 years tomorrow since transplant #1, I feel I have no issue justifying dinner at the Keg.  

Cheers

In Control

Making good progress at home.  Funny how helpful it is to be in control of your own pain and drain management ;) Managed to figure out how to have a shower with these drains on each side which made me feel a lot better physically and mentally.  Mobility a bit better every day and once the drains are out I'm sure I'll improve more.  Had a few visitors as well today and I think all thought I looked pretty strong considering everything.

Little Lucy is slowly figuring out that she can's jump up on me right now...not to say she likes it, but just like I feel about the whole "round 4" scenario, can't do much about it so she is just adjusting.  And as the boys said Friday, "if you kick a field goal, you get a field goal.  If you get cancer, you get cancer." Davis followed that up with "yeah, but 4 times, really?"  Dogs and kids...the bare truth.

Cheers.

I'm out

I'm out.  Feels like I was in for a week.  Last night was not fun or restful for a number of different reasons (music man was replaced by a very high maintenance grumpy woman) so I can't explain how good it was to get out today around noon.  Have had some rest and good food, and mom managed to pick up meds and post-op supplies while I slept, so I am set. Drains and pain still a big challenge and will be for a while but overall I am doing well.  Dr. Graham was there when I left which was great.

Another phase done. Thanks again.

Nodes news and musical unrest

Another quick update before some much needed rest....overnight was not so restful.  Always the case in a multi-person multi-gender room, but had a musical neighbour (kind of like my piano man) who is very nice but actually sang (literally) in his sleep as well as did some moaning snoring kind of thing to which he was totally oblivious to but even with my hearing aids out I was not ;) In any case, managed to learn how to get up for the washroom through the night (with the assistance from nurse Marie detaching my automated leg socks first) gradually although the pain on each side where the drains are was a bit much with such movement.  Saw Dr. Graham this AM before he left for his clinic at the Foothills and my incisions looked good to him.  Also clarified that he only took the sentinal node as when biopsied it showed no unusual cells (full pathology still to come to confirm of course) which is positive news.  He did think I could use another day in hospital just to give the drains a bit more time and to watch for swelling as well as keep the pain management going, which I am not opposed to at all.  Physio came by to do the briefing on post op homework, and now I'm finally going to try for some more sleep:)  Overall, discomfort and pain aside, I'm doing well and feel some relief mentally knowing everything's out.  Certainly feel the love and energy and prayers from far and wide and am so grateful. Mahalo. Danke. Grazie. Cheers.

out of surgery around 1:30

A quick update...got a bed. Very tired. Dr. Graham stopped by and felt all went well. More later.:)

Marked and heading to Flashdance

So a quick update.  Move is essentially finished and ready for the movers to transport everything next week.  Was a definite pre-op workout ;) so glad it's over.  Finished all my pre-op tests and appointments, signed off my condo sale, and my sentinel node is marked and ready to go.

Surgery time now confirmed - 9:10 AM tomorrow.  Check in by 7:10.  Many of you have asked how I'm doing and what I'm thinking about tomorrow.  I'm really not thinking about tomorrow.  I guess I am not looking forward to how everything will look afterward.given my already complicated neck and chest.  I'm obviously uncertain about the pathology.  I'm just happy to get it out.  But honestly I am probably just focused on right now.  Heading out now for dinner and "Flashdance" the musical with friends.  Nothing like a 1980's throw back to keep my focus off tomorrow ;)

Thanks again to everyone for the texts, messages, emails, thoughts and prayers.  Appreciate any extras around 9 AM MST tomorrow for my surgeon.  Cheers

Tricia

Keep on moving

Another week done.  I received a call with a possible surgery date last Friday but haven't shared as it was not set in stone.  Wednesday the 19th at Rockyview- soon which is superb in terms of getting at the tumour ASAP.   That will include a full bilaterial masectomy and lymph biopsy/surgery - reconstruction surgery would be later.  My surgeon is still working on a (very slim) possibility of doing both at once this month but there are some complicated factors as well as logistical considerations to navigate.  Mostly likely I'll be going in this Tuesday for node marking and then the next day for the masectomy/node surgery.  Remarkably, I would be out by Thursday, albeit to manage my wounds and drains on my own!  Fries with that? type of drive-thru surgery these days!

In the midst of all of this cancer nonsense, I am also moving out of my condo this month.  Yes, movers are booked for November 26 (possession date of buyer is Dec 1) to move the majority of my stuff into storage until my new condo in Currie Barracks is completed in the summer of 2015.  I am moving in with a girlfriend of mine who has extra space in the interim, so my mind has not been able to wander to the "what ifs" of my health right now as I need to pack everything I own and sort into several categories: what goes in storage, what I need post-surgery (staying with mom and dad for that), what I need at my friend's place for next 7 months, what needs to be donated, what I need for Maui (assuming I still get to go in January depending on a lot).  As many of you know, I am a spreadsheet girl - spreadsheets calm me down to control lots of things ;)  You should see my spreadsheet for my move!  Sortable columns, colour coding, all which may seem OCD but now that I will not be able to lift 5 lbs for several weeks, will have to "move out" by Tuesday, and maybe not be able to monitor the move, this spreadsheet is truly of major value :)  Mom and I have been sorting/packing every chance we have, which has been tiring but mentally a good thing to focus on during the wait/wait/wait phase.

My leukemia docs, including those in NY, have been updated on everything as well, and after surgery will be ready and waiting to assist the breast oncology team post-surgery to navigate what if any chemo I can tolerate if that's required.  I'm not thinking about that as have to get through surgery first, but at least I know my treatment team will be collaborating with those that know me so well.  That, combined with a certainty of a good surgical team, and the hundreds of wishes, notes, texts, messages etc. from so many people, has allowed me to move into a zone of strength to fight. It's an oddly familiar feeling, having been there too many times before, the survival type of focus, and one that I hope will not be required once this chapter is done.  But it is good to be in it rather than the quicksand feeling I had two weeks ago.

So thanks again to everyone for the constant amazing energy....if you can send a bunch to my surgeon (and some to me) on Wednesday that would be wonderful.  Cheers.

Kindness and more clarity

It's hard to imagine last Thursday was only a week ago.  Feels like a month.  After what seemed like an eternity of waiting (thanks to all who assisted in my keep busy with normal stuff plan) I met some amazing kindness and more clarity at my appointment this morning.  I was in there for around 2 hours, which speaks to a process and approach that is one for the rest of health care to be enivious of. Mom and Tasha (friend and breast cancer alumnus) attended for support and to help retain the information.

I met a gentle, kind and intelligent surgeon Dr. Graham, who I now feel is a critical part of my new team.  Hard to describe, but despite his realistic role as a surgeon, the way he speaks and just is,  brings comfort to me.  After consideration and examination, we discussed options and risks, some of which are unique to me given my significantly complicated history and from having receivied extensive treatment for leukemia, I will move forward with a bi-lateral masectomy sometime in the next month, performed by Dr. Graham at the Rockyview hospital.  During surgery, they will test and if necessary remove sentinel lymphnodes.  I will also have reconstructive surgery, but whether it is done at the same time as the masectomy or later will be determined based on availability of plastic surgeons and timing options.  My primary focus is getting the cancer out soon - I was reassured however that unlike acute leukemia, breast cancer cells do not spread so quickly that waiting a month will change the plan or prognosis.

After that it all depends on the pathology report to know what stage, if it has spread and what next steps are suggested and/or available.  Another key part of my new team, my nurse navigator Edith, explained to me all the details involved with the surgery and a few dozen other things including all kinds of information and phone numbers I am able to call when I have questions over the next while.  She's also amazing.  I should hear within a week about a surgery date.

So more waiting...but unlike last week, I now feel very confident that along with my army of people providing love and support 24/7 (which I am so thankful for and truly feel the benefit of), I have a medical team who are totally capable, and really want to do whatever is possible to make this the last chapter of my cancer story so I can continue on with creating more life stories.   Thanks everyone.

A new challenge

I haven't posted for well over a year - because life has been good and busy and no major health developments to report.  I even just a month ago was in NYC speaking at the Sloan Kettering Cancer Centre's transplant celebration, reporting that 6 years and 3 months later, no sign of leukemia.  Was transferred into the "long-term patient" clinic at the Bone Marrow Clinic in July.  Leukemia seems to be quiet right now.

Unfortunately a couple days ago, I found out I have a new challenge to deal with - Breast Cancer.  Yep.  WTF.  Exactly.  My first mammogram at age 40 prompted an ultrasound and then biopsy last Monday and Thursday afternoon I went to the Bone Marrow Clinic and got results - invasive ductal carcinoma.  Just about lost my breath and my mind at that moment.  Totally believed the schleroderma (skin thickening GVHD from transplant #3), scar tissue from 4 central lines in my chest over 17 years and oh yeah, scar tissue from the surgery and skin graft I have in my neck and chest following flesh-eating disease was showing up in the ultrasound as unusual.  But probably the most convincing argument that this would NOT be cancer, was that I already did that.  3 times.

I left the BMT in shock and then started to realize I had no information whatsoever.  "Someone will call you.  Likely you'll need surgery quite soon, and biopsy of lymphnodes".  That's all.  And so my own words that I have stated at many many Strategic Clinical Network - Cancer core committee meetings and Provincial Advisory Council - Cancer meetings over the past three years as a volunteer patient advisor came to haunt me "Uncertainty for patients and families is often worse than learning the prognosis or the treatment itself".

Friday morning I woke up in pure panic and really afraid and started trying to gain some control.  Phoned to get a copy of my pathology report.  Need a consent form, print consent form.   Find out who has my information, what's their phone number. Leave scrambled message to please phone me with any information.  Book appt. with therapist.  Get call back from Breast Health Clinic office - appt with Dr. Graham, breast surgeon on Thurs Nov 6 10:45. He will do exam, review reports and suggest next steps. Drive to deliver signed consent and get the report.  Read pathology, ultrasound and mammogram report.  Google terms in pathology report to understand it.  See therapist.  Finally feel slightly more in control.  Slightly less uncertain.  No less angry at the unfairness, but slightly stronger. 

So for now I'm focused on Thursday.  That's all I can handle right now. And I know I have an army of incredible people out there who will support me, and most will say that I am so strong and will beat this.  I know I've been strong before and I am sure I'll be strong again, but honestly I am not strong right now.  I'm just surviving. This is a totally new challenge, and after being beaten up three times before, my organs having taken more than the maximum toxicity already, the ledge that I have managed to not fall off before is thinner than ever, so I am also more afraid than I have been in my 17 year journey.  I'm not afraid of what I might have to do, I'm afraid of how far it's gone and what treatment I might be excluded from.

I already have been overwhelmed by kind thoughts and responses from the few people who've heard.  and of course, asking what they can do.  I am so appreciative.  For now, sending energy, strength and focus in whatever form you can would be excellent.  And live your life fully today. Cheers....Tricia