The Zap doctor was very nice...

And even though she spoke only a little English, she explained everything very well and was quite accommodating to my need to be "on a jet plane" on June 29th.  When she wasn't confident of the words she spoke to Matthew, but unlike any other doctor so far in this clinic, she addressed me alone...what a refreshing change to be treated like a person rather than a dependent of my bilingual husband! 

So speaking of dates, here's what I know so far:

Monday May 3rd - last chemo treatment (lets hope forever)
Tuesday May 11th - Simulation run of the radiation treatment where I'll get outfitted with a plastic shield, get my "tattoos" for landmarking the machine and find out what the treatments will entail.  This will be about an hour long appointment and I will have the radiologist there to answer my questions.  Already she's told me that I'll have magic marker all over my chest and that I'll not be able to soap/scrub them off as they'll be needed for the next week's series of treatments
Monday May 17th - first treatment of radiation
Friday June 25th - last treatment of radiation.  There are two holidays in these 5 weeks so with this in mind, I'll have to have one or two days of two treatments to get all 25 sessions in within this timeline.  The worst side effects are skin burns and fatigue...I shouldn't experience much else but it will depend on the sensitivity of my skin, she said.

Speaking of forever, I just found out something.  With people that have had a second diagnosis of carcinoma or a recurrence of their original, they can have chemo again, but will never be given radiation a second time. Once I get my zaps, that is it...they won't give them again...each of us have only a limited allowance of radiation I guess. 

So overall, today is good news.  Provided that my chemo does not get delayed and all this needs to be modified, I am going to be going home to Canada with the boys and Matthew so that we'll have our maximum time visiting friends and family.  So you've had fair warning:  get the hot tubs filled, the barbecue stoked, the camping gear dusted off and put a few imported beers in the cooler:  we're coming and we're bringing chocolate!

Oh, and Miss Icelandic Volcano with the unpronounceable name:  don't you dare think of erupting at the end of June....you will be hearing me from this side of the Atlantic screaming and yelling if you were to delay us even a few hours--so just pack it in and go to sleep!

"roid rage" and body aches

Today's not a good day.  Nor was yesterday, really.  Yesterday morning, I was experiencing quite a bit of agitation, and Matthew called it my "roid rage".  I was cranky, snappy, restless, and had an explosive temper with plenty of tears.  Not a nice person.  That thankfully is gone, but I think now that the cortico-steroids have done their job, the real side effects are becoming evident today.  I'm achy from my neck tendons down to my ankles.  Long muscles feel over-stretched and joints feel stiff, though they don't look swollen.  This is I guess what Taxotere is really like.  Matthew and the boys are all coughing or with the sniffles, so I'm finding myself spending lots of time on my own so that I don't get turfed in hospital like last round with an infection (bacterial or viral).  A friend is coming by today and we'll try to get out to a book store for some quiet entertainment, should I have enough ibuprofen in me by then to manage that type of activity.

So its "slow and steady wins the race".  The count-down is now at 18 days until my last chemo, then maybe as few as 10 weeks to the end of all treatments...we're just trying to stay focused on the light at the end of the tunnel right now!

Terry Fox (by Matthew)

I wrote this last night, and sent it in today as a letter to the editor of the Toronto Star.

So tomorrow is the 30th anniversary of Terry Fox beginning his run across Canada, his great challenge to raise awareness of cancer, and to raise money for cancer research.

It's also my wife's fifth chemotherapy session, to make sure that they've completely eliminated her breast cancer.

I was struck forcibly by the collision of days.  As a nine year old, I was captivated by Terry's story.  My mother, a nurse herself, made sure we were informed, and as a Toronto Star paperboy I had access to all the information about his progress as it unfolded.  It's a little difficult to explain today to someone who wasn't there at the time, but Terry woke us all up.  Suddenly all of us had cancer, all of us had lost a leg, all of us wanted our loss to mean something.  Gradually all of us became a part of Terry's marathon of hope, and we all had something to live for, something to overcome, something to carry us forward...

...and we all grieved when near Thunder Bay, Terry was forced to stop, was forced to concede the battle.  We all cried with frustration, sharing his tears.  Today, thirty years later, I can't think about his voice breaking, the control he exerted in that last interview, without dissolving into tears myself.

I've been a stoic and solid husband during my wife's battle so far, but when I think of the loss of Terry Fox, a tough little Canadian boy, probably my first hero, it gets a bit difficult for me to keep things together.

I will never forget you, Terry.  I thank you for the work you did to make my wife's cancer treatment far more manageable than yours was.  You will never be forgotten.

Mom's Happy Meal

Today due to the Congee de Paque, Malcolm had to accompany us to Bordet for my bloodwork, consultation and chemotherapy (number five of six, if you haven't been keeping track---almost done!).  He was very accommodating and waited patiently whenever we had to either leave to go in an office, clinical room or deal with paperwork.  He read his superhero comics or listened to my ipod, keeping himself busy and not too bored.  We were running late, so didn't start the actual infusion until almost 16.00 h and his mind must have been on his stomach, because when he saw the IV bag wrapped in aluminum foil (to reduce the likelihood of decomposition by UV) he said, "Hey, Mom, is that your Happy Meal?".  That brought a giggle from the nurse and each of us, since nothing could be further from the truth!

We're home now and I'm a bit shaky, but doing okay.  I'm not hungry though nor am I nauseous, tired or anxious, so I guess there's positives in everything.  Matthew's going to heat up some leftovers and maybe make some curry from last night's lamb roast. That might just spark my appetite!

I will check in with you soon...we'll see how things are tomorrow and the next day...perhaps I'll budget for the euphoria/mania and plan to paint the ceilings or rearrange furniture in the next few days.  Or not.

More research that makes me think...

The following quote is from the latest research posted on BCO.org:  "BARCELONA (MedPage Today) -- A longer duration of breastfeeding may predispose women who develop breast cancer to a more aggressive case, but they're no more likely to develop the disease in the first place, findings from a large Swedish cohort study suggest.
Among women who developed breast cancer after pregnancy, those who breastfed their children for more than six months had a twofold increased risk of grade III (high-grade) cancers and tumors with high levels of the proliferation marker Ki-67."

To read this article for yourself, click here.

So the two and a half years plus two years breastfeeding my two children kicked the cancer (maybe already there) into a more aggressive growing type?  In a warped way, I guess that was lucky, since the reason why I found my cancer was because it grew so rapidly.

Thanks midwives, thanks boys.

cancer cells crave sugar

A cancer survivor blog I follow pointed to this article, and I thought it interesting enough to also make note of it.  Certain cancers (breast being one) gobble 10 times more sugar than other cells, and some treatment success has been gained by limiting the cells' access to sugar.  Here's a quote of the abstract:

Researchers at Drexel University College of Medicine have discovered that a certain type of sugar found naturally in the body is elevated in breast cancer cells and is critical for cancer growth and movement. When researchers reduced and normalized the levels of this sugar, they were able to slow the growth of the cancer cells and block invasion. The findings, published in the March 1 issue of Oncogene, represent a potential new therapeutic target for treating aggressive forms of breast cancer.
  
If you'd like to read more, here's the full article. 

No one really knows why they get breast cancer, and I'm not sure if my sweet tooth is the culprit, but its interesting to note that we might have more control than we realize, at least in limiting the spread and recurrence...I just wish this realization hadn't hit me just before the Easter egg gluttony is to begin.

side effects of chemo

Is there any positives about chemo, other than the little monsters floating around in my body will be eliminated?  There are are few that I've been thinking about over the last four rounds and so I thought I'd start a list.

• my psoriasis is gone.  I had a fairly sizable patch at the nape of my neck and the skin there is now as smooth as any other on my head.  Also the "itchy ear" that I've lived with for 15 years is no longer itchy...yeah, I know I should have dealt with it earlier, but now I don't have to!  The likelihood of why these ailments are gone has to do with the cause of them:  they're both auto-immune diseases--the excemea and the psoriasis that now got knocked flat along with my immune system by the chemicals.
• I no longer have a need to wax.  Anywhere.  'nuff said.
• The money I'm saving on haircare products, salon visits and hair accessories must be adding up...perhaps I'm able to buy that Vespa afterall!
• The environment is thanking me.  With no hair, I'm taking fewer showers, not using high wattage appliances such as hair dryers or curling irons and the Ozone is safe from harm:  hairspray just isn't an option right now.
• Weight Watchers must miss me, but I don't miss the 10 or so kilograms of extra adipose I was carrying all last year.  Now granted, only about half of that came off after diagnosis, but I'm feeling pleased that at least I fit into my favorite clothes, even if I don't look very presentable in them (or have anywhere to wear them, for that matter).

So that's it for positives.  Now I've got a somewhat longer list of some of the newer negatives.

Some of the newer side effects that I'm experiencing are like no other that I've had so far, and are frankly, darn annoying.  First, food tastes terrible.  This morning's favorite oatmeal tasted like pencil shavings warmed over.  Water tastes like the dead sea in a glass.  My very artfully made ham and cheese omelette for lunch today had the taste of nothing.  Not even the smoky ham or rich emmental came through...it was as if Matthew swapped the discount/no-name brands for the real thing.  I ate spoonful after spoonful of salsa to give it some zing, something I felt it was missing.  What's more, my raspberry jello had no "perfume" to it and I could only discern the texture and the "sweetness".   This last food experiment has led me to believe that maybe the chemo has burned out my sour and savory taste buds, and perhaps a few of my olfactory receptors as well. For dinner tonight I compensated for this with some generous splashes of tobassco and a healthy grind of black pepper on my chicken noodle soup.  It helped and made me consider taking up chili eating as a sport...I could really kick some butt at this rate!

Now, part of the disappointment with food might have to do with my discomfort.  I've had mouth sores since the weekend, and anything crunchy or chewy makes me feel like I've got serious pizza-burn in my mouth.  You know...that feeling the day after you ate pizza that was too hot and the roof of your mouth got seared off?  These are somewhat like cankar sores, but they're not affected by sour or spicy foods (thank goodness!)  Luckily they're short living, only hanging around for two or three days each so I'm hoping they'll only last until the middle week of each round.

And not to get too whiny, but another new mystery ailment is the tenderness of the pads of my fingers.  Typing is a challenge, since I learned on a mechanical keyboard and like to keep proper positioning and whack the keys quite hard...I'm learning to slouch and strike more softly, at least!  I know now why the ice packs during the infusion were so important. I wonder how I'd feel if I hadn't worn those arctic freezer gloves:  no, on the other hand...let's not go there.

Oh.  I forgot one more positive.  The swelling of my heart at the notes, calls, tokens and gifts and concern I've been receiving since becoming sick.  One such call came yesterday...out of the blue.  A colleague and friend from my Ontario Family Studies Leadership days, Patty, called when she heard I was ill.  I've not spoken "live" with Patty in close to three years (facebooking excepted) but her voice found a spot deep inside that gave me wonder, joy and hope that this illness can be overcome.  When we hung up, I laughed out loud, smiled until my face cracked, then collapsed in tears of gratitude.  Thank you Patty for that gift of connection.  Another example came today in the mail...another Family Studies friend, Heather who was traveling over her March break saw a "scarf" and thought I'd like it so bought it, bundled it into a Canada Post envelope and sent it to me across the pond...though it's not just any scarf, but a "buff" headwear scarf.  Here's a picture of me wearing the "pirate" style, and you can have a look at the neat ways people wear these scarves at www.buff.eu .  Thank you again, Heather for being so thoughtful and knowing just the perfect thing to send...your treats have brought bright spots to my days and remind me about the wonderful people who care for me and are on my side to win this marathon.

An update from Maggie by telephone

Dictated to el marido this morning:

I am still in the care of Belgium's finest hospital for cancer research and treatment.  After a chest x-ray and numerous blood tests they can't find any evidence of bacterial infection, so they are thinking it's a virus that gave me fatigue and a temperature, but have been keeping me in for observation since Thursday night, until tomorrow morning.

It's incredible to consider that for a country so obsessed with food that the meals in a hospital can be so abysmal, so I'm looking forward to being released - we hope - on Monday when I see the staff doctor.  Luckily I have a double room to myself so I don't have to struggle with French with a stranger, comparing medical notes, but on the other hand it's extremely lonely, and there's only so much cross-stitch or ipod gaming that I can do.  I'm looking forward to getting back to my family... they're coming for a visit this evening, and bringing chicken barbeque from the alimentation generale across the street, for a picnic dinner.

 

p.s. from Matthew: Here's a picture from Bordet while we were having a trip to the café yesterday, to give Maggie a change from her room.  Our friend Dee is going to visit Maggie this afternoon, and Duncan has his friend Fritz over to play for a bit.  We've already ordered the barbeque chicken as discussed above, and will be heading into the hospital around 16h for a visit.  If anyone wants to call Maggie, her mobile number is +32 (0)475 36 76 97.  If you are calling from Canada, that would mean that you dial 011 first, and omit the (0) from the number above; thus it would be 011 32 4 75 36 76 97.  Cheers, M.

A little setback

The Husband here again.  Maggie's last chemotherapy session was Monday, and as I wrote a couple of days ago, she seemed to suffer no ill effects, until she came off the preventative steroids on Wednesday and suddenly started to feel tired on thursday morning.

Yesterday evening she went to a support group meeting of about fifteen women who either had undergone or were in the course of undergoing cancer treatment, and while that was a positive experience, when she returned home around 22h she was feeling chilled and feverish.  With her being immuno-compromised of course we have to be vigilant for any signs of infection, and when her fever rose above 38 degrees just after midnight, I called the hospital, and at their suggestion hustled her into a taxi to the emergency room at the Bordet Institut.

As much as I wanted to come with her I had to stay with Duncan, and get him off to school this morning.  Needless to say I didn't sleep much, but dozed through the night, and at 7h30 this morning called the hospital and talked with Maggie.  They had already taken blood, and did a chest x-ray (which was clear) and started her on antibiotics immediately.  I am waiting for her to call again and update me on what's happening, since we want to know what the blood test says; I have some food ready to take to her, as well as the computer and some movies to pass the time.  I hope that she will be out this afternoon, but we will see.

Fourth cycle

The Husband reporting for Maggie.

Maggie had her fourth chemotherapy session on Monday, and this time it was a new drug combination: taxoteres, which she will also receive the fifth and sixth sessions.  Quite surprisingly she experienced no secondary effects at all: no nauseau, no fatigue, and if anything she was a little more energetic than her usual self.  This was a huge relief, as we were very worried about the effects of this new (to us) treatment.

She did have to take some precautions to avoid an allergic reaction, however: carefully timed doses of a steroid were required for the 24 hour period before and two-day period after the treatment.  She finished those yesterday, and this morning is feeling her first after-effects like fatigue and body aches, no doubt because of the steroid withdrawal.  As well, to protect her nail beds from being attacked by the drugs, she had to wear cold pack mittens on her hands and feet during the one-hour drug administration session to reduce circulation in her extremities and thereby reduce the effects on her nails.  So far that seems to have worked, but we're keeping our fingers (and toes) crossed!