Four Weeks after Cycle Four of Chemo

I’m still waiting to feel “normal” again. Even though it’s been 4 weeks since my last chemotherapy infusion of Epirubicin, I’m still not feeling as good as I’d like. I guess I have high expectations but I need to slow down and realize that it takes awhile to get these drugs out of the system and for the body to rebound. I’ve recently had a CT scan and a MUGA scan to see how effective the chemo was. I had an appointment with my oncologist to go over the reports and discuss the next step.

Turns out the CT scan results aren’t conclusive enough for us to know if the tumour in my liver has been affected or not. It doesn’t look like it’s shrunk very much, but that doesn’t necessarily mean the chemo didn’t work. The spot they’re seeing could consist of scar tissue, or it could be a mix of tumour and scar tissue….and I guess it could be a completely active tumour. The only way to determine the status of the liver tumour is through a PET scan. For those of you who aren’t from the province of Saskatchewan you may be shocked to hear that I have to go out of province to have a PET scan. Yes, you read that right. We do NOT have a PET scanner in our province and if someone needs this diagnostic test they have to go to Calgary or Edmonton (in Alberta), maybe even Winnipeg (in Manitoba). The closest destination is Edmonton which is a five hour drive. I have no idea how long it takes to get in for a PET scan out of province but I guess I’ll be finding out and can report on that J. I have no idea on what happens during a PET scan so I’m curious and excited (which may sound weird) because I know this scan will give me some definitive answers about what’s going on inside my body. No matter where I have to go for this test I’ll be driving as it’s just too expensive to fly.  

We did get some definitive answers from the tests though. The lymph nodes in my abdomen have shrunk considerably, and the countless bone metastases are stable. For some reason there was no mention in the report about some other fairly large tumours, including two that were in the lining around the liver. I’ve asked for some answers on that!  

The MUGA scan results came back and I’m extremely relieved that no damage has been done to my heart. I was worried because I had a lot of experiences with rapid heart rate and difficulty breathing during chemo. After four cycles of Epirubicin my heart is functioning the same as it was before I started chemo. This is excellent news.

So, here I sit in a holding pattern. Again. Once the results of the PET scan are in, we can make a decision about treatment. Some of the things we’ve discussed are Radio Frequency Ablation (RFA), or surgery to completely remove the tumour. It all depends on if it is still “functioning/alive”. I hope to get a call soon to go for that PET scan…I’m already feeling anxious about how long it may take to get in.

In the meantime I’ve started back on Herceptin and will start taking an Aromatase Inhibitor. This group of drugs works in a different way than Tamoxifen (which I was on last year) but it still has something to do with the estrogen receptors of the cancer. Because I’ve been off Herceptin for about 4 months I had to have a “loading dose” which took 1.5 hrs instead of the usual 30 minutes.  Of course I thought it was a total waste of time because I didn’t think I’d be affected by it. Boy was I WRONG. Everything went fine during the infusion but when I came home at 4:30 in the afternoon my back was really sore so I laid down in bed to rest. I fell asleep and woke a few times to find that I was freezing cold even though I was still fully dressed and under the covers.   Eventually I woke up at 8pm and forced myself to get out of bed and find the thermometer to take my temperature. Even though I felt cold, my temperature was above normal so I knew I was reacting to the loading dose of Herceptin. One hour later I had a fever of 38.3 but I was still cold and achy all over. I sat on the couch wrapped up in my electric blanket trying to warm up. I had that sucker turned up to high and it still didn’t seem to be warm enough for me.  I took some extra strength Tylenol at 8 and my temperature cooled back to down to 37.7 (still high) and gradually decreased overnight. I was out of bed for less than an hour but I managed to have some cereal for supper (!!!)  before crawling right back in with a good book where I lay sweating until after 2am.  I realized that night I’d much rather be lying there hot than freezing cold. I felt so cold that I was tense, curled up into a ball, and practically had chattering teeth. At least when you FEEL the heat of the fever you can just lay there with the covers off trying to cool down.

Of course I felt the effects the next day as well. I slept til at least noon and had a headache off and on all day…once again I started taking Tylenol.  I even had a bit of a headache the day after that…mostly when I’d bend over or exert myself in some way. Thankfully by day 3 I felt normal again – well, as normal as I can feel right now! The really weird thing in all of this is that I had pretty much the exact same reaction the FIRST time I had a Herceptin loading dose – 10 years ago. Wacky.

I can tell that I am on the road to recovery from the four cycles of Epirubicin with tiny little things that I’ve just started to notice. Just over the last couple of days I’ve started to feel much better. I even managed to force myself to vacuum. I had to take a couple of breaks even though I only did the living room and a couple of bedrooms. It’s amazing how much a place can fall apart when you’re spending your time being focused on cancer, chemo and all that crud. Hiring someone to help with housework has helped immensely. I was worried we were going to have company drop by and they’d see how much cat hair was on the living room carpet, so I needed to get it done and it couldn’t wait for my wonderful housekeeper.  

I’m hoping I’ll continue to get my strength and energy back (the little amount I do have) so I can get some weeding done in the garden. Our yard has NEVER been this over-run with weeds. Having a summer with all this crazy rain has helped with their growth, yet made me cringe every time I walk around the yard. Thistles, pig weed, chickweed, portulaca and baby elm and maple trees stare boldly at me from every angle and every flower bed. It’s like they’re taunting me because they know I haven’t been strong enough to be out there to yank their ugly roots from the soil. Over the last few days I’ve managed to pollinate a couple of pumpkins, so hopefully they’ll have time to grow to jack-o-lantern size. Now I just need to find the strength to pick the beans that are finally starting to ripen. The garden is finally starting to produce some fresh vegetables for us to eat and the timing couldn’t be more perfect.

Anthracycline Extravasation, 8 weeks post-incident (arm update!):

Time is creeping by SO slowly with respect to my left arm and it’s healing – but I knew it would be a very long process. I’m not a very patient person when it comes to something like this. It’s been a little over 8 weeks since the chemo seeped into the skin around my port, causing a chemical burn under the skin. I’m now able to shower and even go swimming if I’m out at the lake, but I have to carefully and quickly dry the area. I’ve kept it shielded from the sun so I don’t burn it on the outside too. The area is still tender to the touch, and hot, but it’s changed color. It’s now brownish instead of red/purple. It is slowly decreasing in size, but after 8 weeks it’s still not healed.

Sometime in the next few weeks I’ll have another port put in. We’ve requested another arm port, and this one will be in my right arm unless the surgeon can somehow insert it higher above the old port. I don’t think the area around the port in my left arm has healed sufficiently for them to remove it yet, but my oncologist thinks they may try to remove the tube that is attached to it, because it comes out near my heart. Apparently, doctors don’t like it when there are 2 tubes in that area, so we’re assuming they’ll want to do something with the old port. I’m hoping they can make a little incision, cut the tube & suture the end that’s still attached to the port and then remove the rest of the tube. Once the area immediately around the port has completely healed from the extravasation, then they can remove the old port.

I’m extremely nervous about the procedure for the new port for some reason. Ok, I admit – I’m scared. I’m so scared I’ve asked my husband to be there with me. The port in my left arm was put in over 10 years ago while I was still in the halo and I don’t remember much. I don’t know how they do it now and how I’ll be feeling after, and I’m scared of being awake while they’re cutting into me to insert the port in my arm. I need him to be there for me, even if it’s in the waiting room outside. I really hope I’ll be given a nice big dose of a “happy drug” to get me through it and blur my memory because I know I’ll be conscious for the procedure. I just hope I’m stoned on legal drugs the entire time…and that I don’t swear at the doctors too much J

Chemo Cycle 4: it’s almost over

I recently had my last Epirubicin infusion (in a vein in my left arm) and am now in the middle of feeling its effects. I had a really good appetite for the first two cycles, or at least I thought I did. I ate fresh fruit several times a day and was able to snack on fairly healthy food when I’d get the steroid munchies – except, of course, the numerous milkshakes I consumed J . The last two cycles my appetite has significantly decreased and I no longer can bring myself to eat the fresh fruit salad I prepare every few days. It’s such a wonderful mix of fresh fruit…pineapple, grapes, raspberries, blackberries, strawberries, blueberries, apple, orange, kiwi, and a can or two of fruit like peaches, mandarin slices or pears. I make a huge Tupperware container full and it lasts the two of us several days. Now, this huge vat of fruit has to be consumed by Husband alone and a couple of times the fresh fruit has turned into what is likely a dangerous mix of alcohol and decaying fruit. I hate to throw out food, but I console myself with thoughts that the Robins and other birds are likely very thankful for the feast I add to the compost pile.

I worried at first that I would gain weight because of the steroids and the steroid munchies but that hasn’t happened. My weight dropped a bit, and was enough to concern my oncologist and then a chemo nurse. She then insisted I see the dietician at the Cancer Centre. I agreed, only because I needed some help with trying to figure out just what I might be able to THINK about eating without feeling nauseous. I knew I wasn’t eating properly but I had NO appetite whatsoever. It seems like my stomach has forgotten how to growl  in hunger, however I know I need to eat so I force myself to drink apple juice, have some toast with peanut butter or to drink an Ensure. Milkshakes have continued to be my “drug” of choice and I’m sure my local McDonald’s has gotten used to a certain bald chick coming through the drive-thru for a medium chocolate shake at all hours of the day and night. Husband has even been kind enough to pick up shakes for me at 10:30 in the evening! I have ventured to other Saskatoon hot-spots for milkshakes including Dairy Queen and the Broadway Cafe (nothing beats their shakes, served in the massive metal container). The best milkshake however, if I’m feeling up for the drive, is to the Dairy Queen on 8^th Street. It’s the one that’s the oldest location in Saskatoon and is only open during the summer months or until it just gets too cold out. I know I can go there on an afternoon when it’s not busy and ask the guy behind the screen if he’ll make me a peanut butter milkshake. Even though this glass of heaven isn’t on the menu, he’ll make it for me. I never go when it’s really busy and lined up to the street, but I’ll stop at 2 on a weekday afternoon for some peanut butter afternoon delight. Damn. Now I want one!!!

I met with the dietician recently and we discussed my problem. She calculated my BMI and saw that I’m right in range (which I already knew) and then calculated how many grams of protein I require daily. During chemo, it’s really important that you consume protein. I haven’t been able to stomach meat lately and my main source of protein has been from Ensure or the odd piece of toast with peanut butter. When I’m lucky there are left-over waffles from Sunday brunch (courtesy of Husband) that I can smear with peanut butter and maple syrup and consider it supper.  I’m nowhere near the amount of protein I need to ingest and I’m not sure I can get there. I’d be eating all day. I have taken many of her suggestions and have been able to considerably “up” my protein intake, even though it’s mostly liquid. The dietician recommended mixing ¼ cup of skim milk powder with 1 cup of milk and then using it on my cereal or mixing it with my Ensure. I also found out about BeneProtein from her. I’m not sure if it’s made by the same people that make BeneFibre, but I do know it’s a tasteless powder you can add to almost anything to increase your protein intake. I got a couple of sample packets from the dietician and will have to see if I can find it somewhere close. If not, it’s off to Nordon Drugs – they carry almost everything “medical” that you need in Saskatoon.

One major thing the dietician was able to figure out is that only COLD food appeals to me right now. Mostly because it doesn’t smell. Many times I’ve had a craving for something and then made it for supper, only to discover I can’t even consider the THOUGHT of eating it. Being in the house when food is cooking turns me off of whatever food it is. When visiting friends in Edmonton recently I was able to consume pork tenderloin and even a home-made BBQ burger (which I consider amazing because of the problems I’ve had with meat). With the dietician’s help, we realized I had been OUTSIDE while the food was being prepared and cooked. I only walked in when supper was ready and I was able to sit down and eat it. I shocked myself that I had no problem eating what was put in front of me there, but I couldn’t eat anything either one of us cooked at home. Now I understand why. I’m just happy this will soon be over, because Cycle 4 was my LAST CHEMO (insert loud scream of joy here:_______) and I know I’ll be feeling better in a couple of weeks and will soon be back to normal as far as eating is concerned. It will be nice to be able to watch commercials for food on TV. I haven’t even been able to handle that for the last 6 weeks.  I should also add that I have NOT puked. Not the first time in chemo ten years ago, or this time.

Right now I’m in the middle of tanking white cell counts and nose-diving neutrophils (the infection fighters) so I’m a little light headed at times, and I’m more tired than usual. It was a beautiful hot summer day today but I really needed a nap. Two and a half hours later I woke up feeling much better and in a much better mood too. Husband is thankful for that J

I’m feeling really optimistic that my upcoming CT scan and MUGA scan on my heart will show shrinking tumors and a heart that is still functioning fine. Then, we see what my oncologist has in mind for me next. Some of my tumors are fairly large, especially the one in my liver and one in my abdomen. My theory is that the Epirubicin kicked the shit out of ME, so therefore it must have kicked the shit out of the cancer. God, I hope I’m right. I swear these 4 rounds of Epirubicin were harder on me than 6 months of weekly Taxotere was ten years ago. I told my first chemo nurse that the other day and she said “Keep in mind, you are older now. The older you get, the harder the chemo can be to tolerate.” I wonder if my menopausal mind has just conveniently forgotten what it was like ten years ago? Unfortunately I didn’t keep a daily journal. Even a couple of months later I wished I HAD. It would have been great to be able to go back and know how I was feeling and what I was going through. I recall telling many people (even on the radio over the years of the Radio Marathon) that chemotherapy was a walk in the park for me and that radiation was the worst. For that treatment regime, it WAS true. The radiation to my neck and the T12 vertebra in my spine kicked the crap outta me and gave me uncontrollable vomiting. The chemo was once a week and was therefore a lower dose than the every three weeks type of treatment. I did tolerate it fairly well, except for my fingernails. Every finger and 2 of my toes looked like they’d been smashed with a hammer. I had blood drained from two fingers at the doctor’s office, and wore band aids on every finger for well over six months AFTER treatment was over. It affected my nails for years – until I had gel nails put on.

I’m still struggling a bit every day with feeling light-headed, a rapid heartbeat and lack of appetite but I just keep telling myself: “only a couple more weeks and you’ll be feeling so much better”. One day at a time. I’m still taking it one day at a time.

ANTHRACYCLINE EXTRAVASATION UPDATE: (or more simply – ARM UPDATE)

One week after seeing the plastic surgeon I went into the Cancer Centre to talk to some of the nurses about my arm. I still have a reddish-purple SORE area around my port. It’s hot to the touch and is very tender. I did not take the plastic surgeon’s word that I could shower and held off. After talking with a couple of experienced chemo nurses I had my first shower a few days ago! It was a quick one, but it felt sooooo good. I have to make sure I carefully pat the area dry.  I even got permission to go swimming in the lake for my upcoming holidays! I just have to be very careful that something like a life jacket doesn’t rub against the area and I need to pat it dry after. The key is to keep it dry, not rub/scrape/scratch the area and to keep an eye on it. They feel it’s come a long way but I still need to be careful.  It’s impossible to forget it’s there because I get twinges of pain every day from that area, and it’s itchy. I still ice it a few nights a week just to cool it down and relieve the pain. I’m hoping it will only improve as time passes. Just like the rest of me J

I'm hanging on - just like this little guy!

Anthracycline Extravasation - 5 weeks later

In one of my recent posts I wrote about “the incident” with my port and left arm during my 3rd chemo infusion.  The last five weeks have been emotional hell and sometimes physical hell too. I have to say right off the start that it appears that things are going to be ok with my arm, but we cannot be 100% certain.

I finally got in to see a plastic surgeon last week. It took 4 weeks to get in and by now the damage has been done. I took information with me on Anthracycline Extravasation so he could learn about it if he didn’t already know (or wasn’t willing to do research). This is a very rare thing…it doesn’t happen to many people. I think it happens a lot less in those of us with ports and is more common in people who get chemo directly into their veins.

To say I was pissed off after the visit would be an understatement.  Husband, on the other hand, was ecstatic. It’s all how you look at the situation and I guess I had different expectations. I expected (or I guess I should say HOPED) that the doctor would have some compassion, be curious, be willing to do research, and not just write me off within moments. Is that too much to ask of a medical professional? Apparently so, because I got none of what I expected. Husband, on the other hand was happy that a medical professional said it looks like we’re out of the woods as far as serious injury. Wife (me) was pissed off that medical professional showed no compassion or interest and didn’t deal with my problem in a manner that fits my high standards.

Personally, I do not think I’m safe yet when it comes to this chemical burn that’s still affecting my left arm. I know how toxic Epirubicin (an Anthracycline) is to healthy tissue and I am still having problems with the area where the drug went into the tissue of my arm. Here’s what happened when we saw the plastic surgeon. He comes in and asks what happened, and then admits he has NEVER dealt with this and does not know ANYTHING about it. However, he then proceeds to feel it, says it is hot in temperature and then tells me that since I’m four weeks out that he THINKS it’s going to be ok and I’m doing all the right things.  I then tell him the oncology nurse’s and my oncologist’s opinion on getting the affected area wet - which could compromise the tissue. They feel I need to keep it dry at all costs, not expose it to sun and continue to avoid having a shower.  I ask his opinion on whether I can shower yet. He says “Yes. Why not?” WHAT???!!! You just told me you know NOTHING about it and then proceed to tell me you’re sure the area is going to be ok and that I can get it wet.  It was clear he didn’t give a rat’s ass about me, or about learning about this condition. I left, feeling extremely angry and disappointed, and carried those feelings with me for the rest of the day. Husband tried to “talk me down” but it didn’t work. I’m very particular with medical professionals and how they treat me. This was NOT satisfactory in my books.

I’m now toying with calling a plastic surgeon on my own and asking if they know anything about this or if they would be willing to do research on it so they can give me an INFORMED opinion. Of course I’ll likely have to pay for it out of my own pocket which I can’t afford. Perhaps I can get some opinions from others on the message boards of the Young Survival Coalition or Living Beyond Breast Cancer. There may be someone else out there who has had this happen to them and can give me some advice. I’ve done a lot of internet research but all I can find is information on how wonderful the new drug Totect is at treating it - and it’s NOT available or approved for use in Canada. What the hell?! Another problem I encounter when I search anthracycline extravasation is that really yucky pictures show up and they freak me out. So far, this drug is only available in the United States and Europe. If it had been approved for use here in Canada, perhaps I wouldn’t be having issues with my arm 5 weeks after the incident happened. Totect (dexrazoxane hydrochloride) has to be used within 6 hours of the extravasation. I got information on it at the Metastatic Breast Cancer Conference in Philadelphia in May, right before I started chemo. I knew about this issue BEFORE it even happened to me. But, because it’s not approved here in my country I can’t benefit from it. I realize it’s very expensive (over $14,000 for treatment of one person) but the costs of surgery and loss of use far outweigh $14,000. I tried to find out what kind of status it may have for getting approved in Canada but couldn’t find anything that related to extravasation. It’s so frustrating.

Even though I’m now 5 weeks past the leakage of the drug into my healthy tissue, I’m still having some issues with the affected area of my arm. It’s still reddish purple, it’s hot to the touch, it hurts to touch it, and I also get twinges of pain in my arm every day. The more I try to do, the worse it gets. Hanging laundry is still painful and I can’t open any of the cupboard doors in our trailer with my left arm. You don’t realize how much you use your left arm (when you’re right-handed!) until it causes you pain to try and use it. I am still icing it for 15 minutes every night just to try and relieve some pain.

Am I being dramatic? Am I expecting too much of a medical professional? Should I be more trusting of the plastic surgeon’s opinion? I can’t help how I FEEL, but I can’t let it go yet. I’m not satisfied that I’m out of the woods as far as serious injury to my arm goes. I have decided on my own that I am going to trust what the nurses at the cancer centre say. They’ve been working with these drugs for over 20 years and they know a hell of a lot more than the plastic surgeon does. The nurses have told me NOT to get the area wet yet and to keep it out of the sun. I’m going to follow what THEY say because I trust them. They’ve treated me for ten years and have gained my trust. As a matter of fact, I trust them with my life.

In the meantime I guess all I can do is what I have been doing….watching….and waiting. And getting more pissed off and frustrated with each day that passes.

Is it really TEN YEARS?

I can’t believe I almost forgot my “cancer-versary” again. Early in my battle I always remembered that day and would flash back in time recalling all that I went through before/during my diagnosis. Several years out I totally forgot about it until coming home from holidays to find a message on the machine from a friend who had called to let me know she was thinking about me on the day I was diagnosed. She never forgets because she somehow managed to track me down and find me in emergency. THAT is a lifetime friend you know you can count on. The last few years I’ve forgotten about the 20th of July and how it changed my life forever. I likely would have forgotten this year too, but early in the year I went through the 2010 calendar and wrote in birthdays and other events. I remembered at that point, likely because around Christmas and New Year’s is the worst time emotionally for me. Some people have a hard time around their “cancer-versary”, but for me it’s New Year’s and worrying about what is going to happen to me in the span of a year. I’ve lost many friends within that one year time frame. I wonder if I’ll lose the fight that fast too.

This year is not what I expected it to be. I expected to celebrate the 10th Anniversary of my golf tournament AND staying stable with stage 4 breast cancer but that didn’t happen.  Early this year I found out the cancer was progressing (spreading) and I would most likely be heading into chemo. After surgery and pathology results, and numerous tests I did indeed go back into chemo in early May. I was filled with anger and I still am. I’ve also found myself filled with more sadness (or self-pity maybe? I’m not sure.) in the last few months, but for the most part I try to be happy and find the positive side of my life the way it is now. Many days it’s difficult or nearly impossible. Others I still find something to be happy or laugh about.

This last week was filled with ups and downs. I had my last chemo infusion (WOOP!) and was so high on steroids that I really lost a lot of sleep. On the other hand, I got a LOT of laundry done! Normally it’ll get washed and into the dryer or hanging up….but that’s where it ends. This week I had so much energy from the steroids (the anti-nauseants are steroids) that I actually FOLDED and PUT AWAY all the clothes I washed!! Hell, I even WASHED A QUEEN SIZE COMFORTER!!! I can’t recall the last time I did that.

Getting the laundry and some other tasks accomplished was awesome. Losing hours and hours of sleep wasn’t. Even worse was “the crash” this weekend. After the highs, there MUST be lowS. My skin hurt SO bad for over 2 days and I was over-tired and didn’t get the sleep I desperately needed.

I hope this week will be better, but now is when my white cells and neutrophils (the infection fighters) will tank. Another hurdle to try and jump over, but I’ll get through just because I KNOW I will soon be feeling better. I’m glad my oncologist changed his mind and decided he only wanted me to do four cycles of chemo instead of the six he originally decided on. I honestly don’t think I could have taken six cycles of Epirubicin. His concern was for the condition of my heart. My concern is for my mental and emotional well-being.

TUESDAY, JULY 20TH, 2010 marks TEN YEARS since I was diagnosed with stage 4 breast cancer. The median survival rate is 2.5 years. Words can not express how thankful I am to still be here ten years later, even though I’m once again fighting for my life. I may buy myself a bouquet of flowers, or treat myself to something. After all, who else is gonna do it for me? It’s my milestone to mark and this is one I’m not gonna let just slip by. Ten years. It’s a big deal. I’m extremely lucky to be alive.

Artwork by a Saskatoon elementary school student. Says it all...

2,000 breast cancer fighters - in ONE place

It’s been just over a month since I travelled to Peterborough, Ontario for the International Dragon Boat Festival. It was a race event (and so much more!) for dragon boat teams of breast cancer survivors. This is the third festival/competition that’s been held like this and I’ve been extremely lucky to have been at two of them. The first was held in 2005 to celebrate ten years of dragon boating by breast cancer survivors - which started with Abreast in a Boat in Vancouver, Canada. Dr. Don Mackenzie started a study with breast cancer patients to see if physical activity actually caused harm to those who had gone through mastectomy. It was widely believed at the time that activity would increase the chances of, or aggravate existing Lymphadema, which is a swelling of the arm that can be extremely uncomfortable. Dr. Don’s study with the girls from Abreast in a Boat proved that physical activity HELPS and does not harm. It was an honor to listen to his inspiring speech at the Peterborough event. You would have thought a “ROCK GOD” walked into the room when he was introduced! This man has changed the lives of thousands and thousands of women all over the world. That was plain to see at the Peterborough gala dinner when he spoke about his dreams for the future of dragon boating for those affected by other diseases, and passing on our love of the sport.

There were a total of about 72 teams of breast cancer survivors. That means EVERY SINGLE person in the boat has battled breast cancer. Even the steersperson and drummer. Some events let a non-breast cancer person do these tasks, and I strongly feel that the entire boat should be filled with those who’ve fought breast cancer. Our team from Saskatoon (www.bustingwithenergy.com) is entirely made up of breast cancer survivors and fighers. We have members who are fresh out of chemo and others, who like me, are metastatic. I’m an Honorary Member and proud of it. Even though I’m not able to be in the boat I FEEL like I’m in it when our girls are paddling their hearts out.  Soon they’ll be racing here on our home turf and I hope to be able to go cheer them on. For now here are some photographic memories from Peterborough, 2010 as seen through my camera lens and the lens of my friend Mike.

Kathleen, Lisa & Diane

Busting with Energy from Saskatoon!

Lisa with a massive pink garbage truck

Lisa, Norma & Ann at the World's Tallest Free-standing Lock

The hosts with the MOST! Survivor's Abreast from Peterborough

Dragons Abreast from Brisbane, Australia taking part in Friday's Pink Parade

The FUN and uplifting Pink Parade through downtown Peterborough

One of 2 teams from Italy.

Busting with Energy in the Pink Parade

Lisa with Busting with Energy on parade route

The one & only Dr. Don Mackenzie - God of breast cancer dragonboating.

Party time at Saturday's Gala Evening. First time 2,000 people were served a sit-down meal in Peterborough!

Anthracycline Extravasation - oh CRAP I’m an “incident report”

Cycle 2, day 14 - I don’t get to sleep until after 4am the morning of my golf tournament and then wake up around 10am with a skull pounding headache that won’t allow me to go back to sleep. I manage to haul myself out of bed to eat something, take some Tylenol and heat up a hot pack for my neck.  Only one extra strength Tylenol remains in the bottle and I hope it will work in combination with the hot pack. I somehow get back into bed after microwaving my hot pack and manage to sleep a bit until noon. The hot pack has helped but I still have a low grade headache for the rest of the day.

As I’m eating breakfast the film crew returns. Once again they film me putting on my makeup and several times I think about how weird it is that I feel comfortable with two strange guys on either side of me with their camera lens’ literally inches away from each side of my face. I don’t know where I found room to hold up my mirror to see what I was doing because they were so close to me. We do some more one-on-one interview questions and then all head out to The Willows where I’ll be surprising people at the banquet. I have it all worked out with the event coordinator that she notify me when almost everyone is through the buffet line. I figure they can eat while I talk J The film crew is waiting for me when I pull up and I feel like Ed McMahon ready to give away the Publisher’s Clearing House prize. It’s like a high-stakes secret stake-out. We don’t want anyone to know I’m there, so the doors to the banquet room are closed until the event coordinator bursts in to get everyone’s attention. She tells them they are being too loud and security is coming. Next thing they know, I’m walking through the door surrounded by the film crew and it’s like something out of a crazy movie. The entire crowd goes ballistic when they see me and I feel good knowing they are happy I’m there. The standing ovation seems to go on forever so I make motions for them to sit, as I know the film crew has a flight to catch and it’s embarrassing standing there with all that crazy applause. I didn’t do any of the work and don’t feel I deserve the accolades. The crew sticks around for a few minutes to film before rushing off to the airport with all their gear and I continue on with my prepared speech. At the end I tell everyone I don’t want it to look like I’m being rude, but my body can’t fight anything off right now so I’m literally walking out the door and will not be talking to anyone. I’m just going home. No hugs, no handshakes, nothing. The end of my speech brings on another standing ovation and I walk out of the building to go home and rest.

I go home, put on my new bear pj’s and wait for Husband to come home. He shows up with my brother and niece who both volunteered to take the team photos (a job I usually do) awhile later and they all regale me fun stories from the entire day. It feels like I was actually there because they are able to bring it all to life, and I recognize many of the people they are talking about. I download the photos that were taken and we all look at them together as more stories come up. It sounds like it was another crazy FUN day and I’m sad that I missed it. On the other hand I know I would never forgive myself if I got sick, and I also know there’s no way I could have been there all day because I just don’t feel strong enough. It’s hard to admit that to yourself, but I’m old enough and have been through enough with this cancer crap that I should know what really is best for me.

Day 16 - I also have a short weekend getaway coming up and I want to be able to take the trip I paid for many months ago. Our dragon boat team of breast cancer survivors (Busting with Energy) was leaving for Peterborough, Ontario for a major breast cancer dragon boat festival of over 73 teams from across the world. I believe there were 15 teams from Australia alone that attended, as well as 2 teams from Italy, many from throughout the U.S. and tons of teams from Canada where breast cancer survivor dragon boating began with a study by Dr. Don Mackenzie.

I purchased some hospital procedure masks and also still have a 95% effective one from the H1N1 scare last year that hasn’t been used and I’m bound and determined to be on that plane. Luckily I’m staying with my old radio pal Mike Melnik and his wife Donna and I’ll be able to get all the rest I need. An added benefit is that he lives only 2 blocks from the race site! I am on a flight separate from the team and arrive long before they do. I only managed to make it to one race on Saturday afternoon, but I took in the parade of teams, the gala supper Saturday night (which was the biggest sit-down meal EVER in Peterborough, serving over 2,000 people), and wandered through the shopping area with Mike  -stopping every couple of minutes to visit with someone he knows. I sleep in late every morning at his place and feel at home enough to help myself to whatever food I can find. An added bonus is getting to see his daughter Jess who was just a wee little thing when I last saw her. She used to call me when I was on the air at CKIT in Regina to request a song. I would, of course, tape her and play her voice on the radio. We’ve been each other’s “fans” ever since and to see her as a confident young woman with a career and so much talent is overwhelming. Where does the time go?! As a child-free person (notice I didn’t call myself child LESS) I’m now finding that I feel exceptionally old because everyone’s children are growing up way too fast and I’m wondering where the time went.

Day 19 - I come home from Peterborough with what feels like a perma-grin on my face and from within. The getaway to laugh and visit with a friend was just what I needed to get through the next chemo I was facing later that week. We spent hours bringing up names from the past, telling radio stories, and several times over the course of the weekend we laugh about the drive from the Toronto airport to Peterborough. Mike brought his 2 seater Pontiac Solstice and I had a fairly large suitcase, a carry-on and another back-pack type bag. I discover in the loading lane out front of Pearson that he wasn’t joking when he said his trunk only holds two 12 packs of beer. Our only option is to put my suitcase on top of me for the 1.5 hour drive to Peterborough down the 401! Mike somehow manages to lift the suitcase in on top of my lap, balancing the bottom section on the console. He then retrieves one of my bags from the trunk and I pull out my little travel pillow. I nudge it under my right knee and it takes care of the weight of the suitcase on my lap. Mike is barely able to shift into 5^th gear because of the suitcase on the console. I’ve got my arms on top of the suitcase,  and when he removes it I realize I likely would have been really uncomfortable without the suitcase on my lap as there are no arm rests!

Mike wasn't lying when he said all that fits in his trunk are two 12 packs of beer!

 Needless to say, the return trip to Toronto’s Pearson International Airport is made with Donna’s much bigger car and I don’t have to snuggle up to my luggage for the trip. By 9:30pm I’m home in Saskatoon and Husband picks me up in his old classic car for a smooth ride home. I’m jet-lagged and on the wrong time zone but giddy with happiness from such a great weekend with friends. The stress relief that laughter brings is priceless. Thank you Mike, Donna and Jess!

Day 20 – chemo is days away but I’m feeling strong. The damn rain has finally stopped and we still haven’t planted the vegetable garden or any flowers in the yard. Husband takes the night off and rotor tills the garden (on June 15^th!) and then we plant it right away. We also dig out some perennials that didn’t survive the winter, and get some petunias planted. Everything else goes back in the greenhouse because more stupid rain is coming. My rain gauge showed 7/10^th’s of an inch one day and then 5/10^th’s the next. I’ve officially had enough and want SUN.

We see the oncologist and he tells us that I will likely only be getting four cycles of chemo instead of the original 6 we discussed. I’m SO ecstatic, but my happiness is soon squashed like a bug.

Cycle three, day 1 -I have an I.V. infusion at the hospital and then my chemo at the cancer centre later. Everything is running smoothly until the actual chemotherapy starts to run. The Epirubicin has been running for less than 2 minutes and I can feel that something is not right. My first instinct is to yell “Nurse!” as loudly as I can (which is very loud by the way) but I grab the call button instead and am relieved when a nurse is in the room in moments. We have newer I.V. machines at the Cancer Centre now. I know how to stop the old ones, but all I’ve learned on these new ones is the very valuable button called “Silence” to stop the I.V. from beeping me to insanity. The nurse has 20 years of experience and immediately sees we have a problem when I show her my arm and she shuts down the machine. It’s obvious that the chemotherapy is somehow leaking outside of my port and into the surrounding tissue. I’m scared shitless because I know how serious this is. I’ve done extensive reading on Epirubicin and how toxic it is if it gets outside of your vein. Oddly enough, my friend Julia who accompanied me to the Metastatic Breast Cancer Conference in Philadelphia in May had picked up some information on exactly what has just happened to me. The technical/medical name for it is Anthracycline Extravasation and it is NOT pretty. It’s downright scary.

Meanwhile back at the cancer centre, the skin around my port is red, hot, burning, throbbing, itching, and in general scaring the crap out of me but I remain calm. I become slightly agitated and worried when another nurse wants to complete the Epirubicin infusion by using a vein in my other arm. My veins don’t like needles anymore and I’m worried the needle will poke through the vein and we’ll have the same problem on the right hand side. I do not move my arm one iota during the remainder of the infusion. I’m that scared of it happening in my right arm too. Husband is with me and has no idea how serious this is. I don’t tell him what I know, but I can tell the nurse knows that I KNOW. She is extremely upset and apologizing but there is NO REASON for her to apologize because it’s no one’s fault. There’s no way anyone could have known that the time my port decides to fail is during the most toxic medication possible. It’s just the kind of luck I have. Shitty luck. My arm is rubbed with a sardine-smelling toxic chemical called DMSO (Dimethyl Sulfoxide) which causes it to burn and hurt even more, and is then wrapped in an ice pack which must remain on for an hour or two. My oncologist and nurse come in to check out the situation at my request and I leave after business hours with a large ice bag wrapped around my arm and proceed to drive home with my left arm elevated.

The presence of the chemotherapy in my left bicep is likely going to cause a chemical burn from the inside out.  Worst case scenario is there may be blistering, my skin and tissue may go necrotic (turn black and die) and I may have to go through numerous surgeries to repair my arm. These surgeries could include skin grafting, reconstruction, debridement (like any other burn patient) and severe disfigurement. It scares the crap out of me but I know there is nothing I can do to change what has already happened. All I can do is hope and pray that it will not be a severe case and that my body can handle it. When my white cells and infection-fighting neutrophils will be at their lowest is when I may be in some very real danger of infection in my arm because of the toxic burn from the chemo. I inform my parents and some other family members via email and carry on with my new ritual that will encompass the next week.

Every four hours I must put DMSO on the area that’s affected, along with the surrounding area. After it dries/absorbs I must then ice it for 15 minutes. I have to do this every four hours for the next SEVEN days. I’m on a steroid induced high but the thought of waking up every four hours to put this chemical on my arm, wait for it to dry, and then ice it for 15 minutes makes me exhausted just thinking about it.

Day 5 - I finally show my husband a brochure I got at the Metastatic Breast Cancer Conference in Philadelphia on exactly what has happened to me. I never considered I would have to face this kind of complication. He realizes how serious it is after reading the information and looking at the horrible pictures. I take the paper and put it away in the spare room so I don’t have to see it anymore. I’m having enough anxiety about it and certainly don’t need to see it several times a day.

Cycle 3, Day 6 – after several days of my “arm ritual” I am indeed exhausted. But, I’m usually exhausted at this point in my chemo cycle simply from a lack of sleep. This time around it seems like all the side effects I’ve experienced through the first two cycles are happening sooner and are harsher. One to two days earlier than normal every inch of my skin hurts. Before I even eat my supper I have a severe case of heartburn that has me actually considering that it may be a heart attack instead of heartburn. 2 Tums and a Gravol later it’s gone and I’m able to eat the home made Turkey soup my mom sent.

It’s a beautiful sunny day but I don’t haul my butt out of bed until almost 3pm. Waking up at midnight, 4 and 8am, and again at noon has me utterly exhausted. I have three alarms set for each four hour block of time to ensure I won’t sleep through the time I should be applying the DMSO and icing my arm. Every four hours I get up, apply the solution, set my alarm to wake me up in 20-30 minutes when it will be dry and then set my alarm again to go off in 15 minutes so I’m awake to take the ice off my arm. Luckily I have three ice bags I can rotate but two of them are rock hard and don’t bend around my arm like the other one. It takes over 6 hours for one to defrost to the point that it’s pliable and I can use it. Since I’m up anyway I take the time to eat a bit of cereal and drink juice so I won’t be weak when I finally decide to get out of bed once and for all.

I attempt to do some work in the yard late in the afternoon. I finally set foot into a greenhouse on June 15^th to purchase some flowers and now have to find the energy (and Husband/friends) to get them in the ground. I start by attempting to dig out some grass and dill in an area of the garden the rotor tiller couldn’t get at and find that it hurts my arm just to try and scratch away at the dirt with my three-pronged garden rake. I loosen it as best as I can by taking it really slow and then proceed to pull stuff out by hand but before long my body is telling me to sit down and rest and I must abandon my good intentions. I decide that since I can’t do any actual “work” I should sit down with my garden notebook and write down where I want everything planted. If I get Husband out to plant he works much faster than I do and everything must be planned out or we both get too stressed. I tend to putter around and think too much, plus my menopausal mind gets easily distracted. I can’t keep up with his speed, so I decide that if I plan it out there will be less stress and more will get accomplished in a short amount of time.

I brought my own plants out of the greenhouse yesterday to start getting used to sunshine. Rather late to be hardening them off and getting them adapted to the sun’s rays but it’s been a crappy year. I’m surprised and pleased to see some lettuce seeds already sprouting in the garden and they’ve been in the soil for less than a week! After more rain late last week I had to push several bean seeds back into the soil…they came floating back up to the surface with the rain. I hope for SOME kind of garden crop this summer but it’s extremely late in the season so I’m not sure what to expect.

I feel a huge sense of urgency to get my store-bought and home grown flowers into the ground and planters. It’s like time is against me because of what’s happened with my arm. I am constantly thinking that I could be hospitalized soon and therefore I really should try and tie up loose ends at home. That includes getting the flowers planted. I’ve had offers from friends and may now have to take them up on it. Just bending over causes pain for my affected arm so I’m leery of trying to do it myself. I don’t want to take any chances and make the situation worse than it may already be. I don’t even want to think about what should be done INSIDE the house but am thankful we recently hired a young woman to do some house cleaning for us every few weeks so at least I don’t have to worry about that. I keep thinking I should pack a hospital bag and update my medical history and medication information in the event I need to go to emergency. I wonder if I’m being paranoid or just a good planner. Perhaps a little of both. Tonight will be the 6^th day of sleeping on my right side all night with my left arm elevated. I don’t dare sleep on my left side. I figure if I’m not even allowed to shower, then I likely shouldn’t expose my arm to the sun or lay on that side. I know that elevating it will help so I try to get my arm as high and stretched flat as possible each night and consider myself extremely lucky that I’m able to sleep…even if it’s just 4 hours at a time.

My arm - the first night

BALD & being followed by a film crew

It seems like only yesterday I wrote a long-winded posting for my blog, but so much has happened in the last 10-15 days I’m not sure I can pack it all into one writing. You’d be here for days J

I just had my third cycle of Epirubicin this past week and it seems the side effects are happening quicker than they did the last 2 rounds. Everything seems to be happening a day sooner than it did before. I’m just starting to come down from my latest steroid “high” which once again included 4 days of being awake until 5 or 6am. Last night I got less than 8 hours sleep and it was interrupted several times (more on that inconvenience later) so tonight I will likely CRASH big-time and won’t come out of the fog until after 2pm tomorrow. Of course the weather is supposed to be sunny and warm on the days when this carcass is going to want to sleep all day. Crappity, crap, crap L. Grrrrrrr!

Ok, let’s go back in time to June 5^th where I last left off. I woke up that morning and all signs of the sore throat and cold I’d been experiencing were suddenly GONE….just like that.  Within a couple of days my nose is running non-stop again. I sometimes wonder if I have allergies, but I know the Epirubicin dries out your system so my eyes and nose are likely just extremely dry and that’s why I’m constantly dabbing my eyes and blowing my nose with three ply tissues. It’s so bad I’ve started a system: clean Kleenex in the right pocket of hoody; dirty used Kleenex in the left. Sometimes my pants pockets have the same system. That’s how much Kleenex I’m going through. I don’t feel sick, but my eyes and nose are running constantly.

I spend some time on the desktop computer and scan some old photos from the early years of the Lisa Rendall Golf Classic. I had the bright idea to do a slide show of photos from the last nine years for this year’s 10^th Annual LRGC and now the event is mere days away and I’m just getting the pictures organized. A procrastinator under pressure, I scan til the wee hours of the morning because I know my time will be tight for the next few days. A film crew is flying in from Toronto to follow me around for a couple of days and I need to get some things done before they arrive. Two of the crew will be staying at our place so I change sheets, get the spare rooms ready, and buy some junk food so we have some munchies to serve if we’re visiting late at night.

Sunday – yard day. The weather is nice and Husband and I spend several hours in the yard working at eradicating our disgusting weed situation. Its dandelions, thistles, chickweed, and tons of baby elm and maple trees that I curse more than the actual weeds. The vegetable garden is still too wet to rotor till and there’s a heavy crop of dill covering the majority of the garden. Now I’m kicking myself that I wandered through the garden like a dill fairy scattering the seeds in the fall as I cleaned up.

Monday – I go out in public for the first time since shaving my head. I feel good, we need groceries, and I figure I better get myself out of the house at some point or I may never be seen in public again. I go to Co-op, keep my head down, ignore everyone around me and get groceries. I have no idea if anyone stared at me because I didn’t look around. I wore my silky sleep scarf which has now become like a permanent part of my head. I didn’t think I’d like wearing a scarf on my head but I’m actually enjoying it and am not upset with the way it looks. I spend the night on the couch watching The Bachelorette (cringing with every stupid giggle from that girl who can’t seem to STOP giggling) and writing my speech for the golf tournament on Wednesday. My secret plan is to show up at the banquet, surprise everyone and do my speech in person. They all think I’ll be joining the banquet via Skype but I plan on invading the place and being there in person – only long enough to say a few words and immediately leave. The film crew arrives in town tonight and will be here tomorrow morning so I need to get the speech done beforehand or I won’t be able to concentrate.

Tuesday – I’m impressed that I can actually wake up and be dressed by 10am for the arrival of the film crew at 11. I even manage to wolf down my cereal before they get here and that’s a major feat because of the fibre content it has! Luckily the crew is running a bit late and arrives around noon and I’m thrown for a loop when I see two vehicles pull up in front and FOUR people get out. I never asked, but assumed there would only be two. One interviewer and one camera man because that’s all there was last year for the documentary. Then I recall there was a sound man in Calgary and I understand why there are three, but I’m not sure about the four of them until they’re all in the house and I realize I will be followed by 2 cameras, 1 sound guy with a big long fuzzy boom microphone, and the director. The equipment they haul in fills the entry way, the living room and the kitchen and I’m wondering if I got myself in over my head. All doubts fall away when I meet the two crew members I’ve never met before. Everyone is down to earth and we’re all comfortable with each other so this should be just fine.  Next thing I know I have a small microphone hiding inside the front of my shirt, two cameras literally on either side of my face and I’m putting on my makeup. I’m answering questions from the director and trying to concentrate on applying eyeliner while answering. I hope my menopausal brain doesn’t act up too much over the next two days. There’s nothing worse than losing your train of thought while being FILMED.

I have a podiatrist appointment and then later an appointment with my hair stylist to trim the bangs of my wigs, plus I need to buy a hat that doesn’t hurt the bristly hairs on my head. My hair literally hurts. I don’t let anyone rub the stubble because it is driving me crazy. I bought a new hat in Philadelphia at the Metastatic Breast Cancer Conference and had to sew it up in the back to make it smaller since losing my hair. Unfortunately I can’t wear it because it hurts my head, so I need a new hat that’s soft inside. I make plans for part of today’s outing with the film crew to be the search for a soft hat to cover my bald head so I can feel more confident in public.

I now understand just a portion of all the work that goes into making a film, whether it’s a short documentary or a longer film (which this one will be). The drive over to my podiatrist’s office consisted of a camera man and sound guy in my backseat, the director in front asking questions, me trying to drive and the backseat cameraman trying to get shots of me from crazy angles (plus the other camera man following us in another vehicle). The treatment room is small, so only the sound guy and one camera man come in with me to meet with my expert foot doc. While Doc digs under my big toe nails that are still affected from Taxotere treatments 10 years ago,  I almost burst out laughing when one of the fuzzy microphones attached to a camera is rubbing on the side of his face and he doesn’t even flinch. Turns out he’s a better actor than I am J. Next stop with the crew is the hair salon where I’m getting my wigs trimmed. On this portion of the trip, the crazy camera man sits in the front (no seatbelt) and practically wedges his butt between the front of the seat and the dash to film me as I’m driving. The other vehicle is still following us and I feel for a moment like this must be what it’s like when they’re filming The Amazing Race.

Brad - sound expert with all his gear

Broadway Avenue is our ultimate destination and we must have made quite a sight piling out of the vehicles with all that camera equipment, the big fuzzy boom mic and all of the crew following me. By the time I get into the salon, my stylist has already been set up with a mic pack like mine and one camera man and the sound guy are waiting for me to arrive. They film as I put on each wig and she trims them to suit me. The only time I’m challenged to feel natural is when the camera is blocking my view of the mirror and I have to try and pretend I’m looking at myself and the wig to see if I like the length of the bangs. My first instinct is to lean sideways to see past the camera to the mirror but I hold back and play along, hoping it looks real when I’m looking at the camera pretending I’m looking in a mirror. This is much harder than I thought it would be. How do you check out your hair when you can’t even see yourself in the lens of the camera that’s just a couple feet from your face?!

Next stop is “Hats & That” on Broadway to see if I can find a hat that’s comfortable. Luckily the store owner is ok with the film crew coming in with me and I get busy trying on hats and having a good laugh. The first hat I try on turns out to be “the one” but I’m reluctant to spend $34 on a small hat. I then realize that it’s worth it if I feel comfortable and even slightly attractive and whip out my debit card. The hat is now known as my 38 dollar hat (tax!) and I’ve got so many compliments on it that it’s definitely been worth it.

Our final stop on Broadway is Schmatta. I’ve heard they make T-shirts there and I want a special shirt that proclaims my theme “FYC” that I can wear to the golf tournament. One of the girls working in the store tells me her mom is in the hospital with metastatic breast cancer. It amazes me that I can walk into a store, talk to a young woman and discover that her mom is in a similar situation to me – in the same city. It doesn’t take me long to grab a black t-shirt, choose a font, and next thing I know my new FYC shirt is hot off the presses and ready for my surprise drop-in to the Lisa Rendall Golf Classic the next day.

We take a break from filming and shopping by stopping for lunch at the Broadway Cafe (Mmm Milkshake!) and then make our way over to 8^th Street and Jammeez so I can get a new pair of pyjamas. I’m travelling to Peterborough, Ontario to cheer on our dragon boat team Busting with Energy and am staying with my friend’s Mike and Donna. I figure I should have pj’s to shuffle around in while staying there, and while the film crew is staying at my place. Several of us get in the pj mood because they have such neat stuff there. One of the camera guys is particularly taken with the men’s one piece footed pj’s but the feet clearly aren’t made for real men with size 13 feet so he’s S.O.L. I’m happy though because I found some cute Hatley pj’s with bears on them.

Rob - one of the two camera men

It’s only my second day in public with my bald head, but I’m already used to it and feeling confident. I had no reason to think people were staring at me because I’m hairless, most likely they were staring at my “entourage”! We arrive back at home where my husband has arrived with pizza for supper, so we sit down with a couple bottles of vino and some cold beers to chow down and have a visit. After supper we do a sit-down interview in the kitchen and I cry as I answer some of the questions. It’s been a long day and my emotions easily come to the surface.

The day ends for me around 3:30am (technically the next day!) because I sit down at the computer at 10:30pm to put together the photo slide show for the golf tournament which starts a little over 6 hours after I finish burning the DVD. Luckily I can sleep til noon because I’d already made the difficult decision not to attend my golf tournament, and I don’t have to worry about the film crew because they’re going to film some of the action for the morning while I get some much needed sleep. The tournament has been going strong for nine years and I’m not able to be there for the tenth. I’m bummed, but know I have to do what’s best for my health and am able to get by knowing everyone will be surprised to see me show up at the banquet when they’re least expecting it. I’d rather be there for a few minutes to thank everyone and say a few words than miss it entirely – especially after ten years.

Chemo cycle 2: I think I stink

Since my crash from the steroid high after chemo I’ve been feeling on the crappy side for the entire week. It doesn’t help that now I feel like I’m coming down with a cold and have a sore throat.  I haven’t left the house to go out in public since my head was shaved over a week ago. My confidence isn’t that high yet, and I’m not feeling strong enough to leave the comforts of home. Here’s a review of my week so far…

Day 4: face is red, along with my nose…just like it was last cycle. I’m SO tired today because I was awake until after 6am because of the Dexamethasone. The crash starts later that night when I fall asleep on the couch. Husband made a really nice pot of home made chicken noodle soup. I have two bowls for supper, which is unlike me but very encouraging that I’m able to eat that much. As I crawl into bed I think I may never wake up because I’m so sleep deprived.

Day 5: I sleep til 2 in the afternoon. YES! Finally some sleep. Chicken noodle soup hits the spot for supper for the second day. As I get ready for bed I notice my skin hurts as I put moisturizer on my face and head. I also notice little bristly hairs on my hands. Now the little prickly hairs left on my head are falling out.

Day 6: Since having my head shaved a few days ago I’m having problems sleeping at night, mostly because I can’t get my head and neck in a comfortable position. Normally I would have a cushion of hair between me and the pillow, and because of the neck surgery I’ve gone through, my head and neck have to be positioned “just right” or I can’t get comfortable.  My bristly head is sticking to the pillow and the sheets, but once I eventually fall asleep I’m out like a rock. I sleep in late again and when I wake up I discover my right nostril really hurts. The chemo can really affect your nose by drying it out so I grab a little mirror and have a peek up my nasal passages. I had put mineral oil in my nostrils before bed last night to keep them moist, but now I’ve developed something that looks like zits inside my right nostril. I resist the urge to poke at them and put some polysporin in my nose. I spend the rest of the day laying around feeling like crap. In the evening I do some updating on my website. As I lay on the couch with the laptop I swear I can smell one of those packaged rice mixes cooking. I ask Husband if the house smells like something. He can’t smell anything, and when I describe the smell he says it definitely does NOT smell like that. The stench is driving me crazy. I don’t like those packaged rice mixes yet I’m sure I’m smelling one cooking. I feel like I’m losing my mind but I know how the nose can play tricks on a person going through chemo.  I’m still working on the website adding sponsor logos for the golf tournament around 11pm but lose an entire page when my wireless connection is lost. I shut the computer down in disgust and go to bed.

Day 7: I sleep until 1pm and my stomach feels like it’s grinding away at something for the majority of the day. Luckily the Ranitidine is helping and I’m not having any pain or heartburn. Today I also think I stink. You read that right! I keep smelling something and think it’s me. It’s like a chemical smell and I’m positive it’s oozing from my every pore. I shower mid-afternoon and when Shauna Foster is over for a visit I ask her if I stink. She tells me she can’t smell anything. Husband says he can’t smell anything either. Shauna brings over a bag full of books and I have a mop pail full. We each wind up with a pile of “girly” books we’ve never read and are both excited to tear into our new reading material. My nose is continuing to play tricks on me with smell, and now both nostrils have sores in them. The polysporin is now in both nostrils and they aren’t as sore and itchy as they were.  I notice today that my heart rate is getting high with almost any kind of activity. I first notice when I’m outside trying to pull down a Black Bird nest with my little three-pronged garden rake. Just reaching up with the rake and pulling down the nest gets my heart rate pumping so fast I need to stand there for awhile to catch my breath. I give up on finding nest #2 and go back inside.

Husband and I spend some time weeding in the backyard after supper. It’s so muddy the weeds come out easily but it’s frustrating because the yard is like a disaster zone and a few hours of weeding after supper isn’t enough to get the entire yard done. It’s never been this bad this late in the season. The vegetable garden is so wet it hasn’t even been rotortilled yet, therefore it’s not even close to being ready to plant. There is, however, a very large crop of Dill growing like a carpet across the majority of the garden.

As I’m brushing my teeth before bed I notice that some hair is missing on my bristly head and it appears to be in some kind of pattern. I show Husband and within moments he tells me it looks like a swastika. My eyes bulge as I screech at him and run to the mirror….and yes, I see a swastika pattern on the side of my head. Oh. My. God. There are other patterns of missing hair on the other side of my head but it just looks like worms have been making tunnels. How can I possibly go out in public bald now? I’ve got a flipping swastika pattern on my head!

Day 8: A sleepless night last night. I still can’t get my head positioned right to keep my neck comfortable. I have some new symptoms today including some redness and soreness on my port, and the left side of my throat is sore. I’m more concerned about my throat than anything else. Luckily the white bumps in my nose have decreased in numbers. I do a 9am radio interview with a station in Peterborough, Ontario. I used to work with Mike Melnik way back in the early 80’s at CKIT in Regina (CKCK’s FM station). He’s now doing the morning show on KRUZ FM in Peterborough, which is hosting an international breast cancer survivor dragon boat festival the weekend of June 11/12/13. I talk with Mike & his co-host Catherine for about 20 minutes and mean it when I say I will do my best to be at the festival, yet I assure him I will stay home if I know I’m not strong enough to attend. I’ve had my plane ticket for so long and don’t want cancer to take this trip away from me but I will not take a chance and jeopardize my health if I know I’m not feeling 100%. 

My sense of smell is still playing tricks with me. With the windows open tonight to cool off the house I suddenly smell fumes from spray paint and close the windows. Later, when I’m outside I smell the paint fumes again. I ask Husband if he can smell it and he replies “All I can smell is the lilacs”. When I smell them up close they smell like lilacs, but further away I’m positive I can smell spray paint. I’m saddened that one of my favorite flowers is smelling like toxic fumes because of the chemotherapy.

Day 9: Wake up and my sore throat is not as bad as I thought it might be, but it’s still there along with a slight headache. I email my nurse so she’s informed in case things get worse. My cousin Robyn and her husband Rob come over for a visit in the afternoon bringing Lime Chicken and their vacation pictures. Supper is now taken care of and I’m transported away to a tropical paradise with their photos.

I employ a new tactic tonight in my quest to get comfortable for sleep. I find a silky, slippery scarf and tie it around my head. I then lay a hand towel, folded in half, on top of the pillow to help keep my neck in a good position. The combination is perfect! I can move my head without it catching on the pillowcase and sheets and my neck finally seems to be in a position it can handle.

Day 10: last night’s silky scarf & towel duo did the trick! I sleep like a rock and hope this is the CURE to my neck problems.  I spend the day proofing some last minute things for the golf tournament and sending out other emails. I also start packing for Peterborough. A girl can always hope for the best right? My throat is still sore today and my voice is hoarse. I check in with my nurse via email to update her and let her know I don’t have a fever. I also record a greeting for all the crazy chicks who will be out at the Red Bras Rock fundraiser. It’s a martini party that is raising money for the C95 Radio Marathon. 120 women, a few male bartenders and T-bone playing the tunes. It started as a Liberal Party fundraiser but has turned into a fundraiser just for breast cancer research. Even though it’s no longer for the Liberal Party, MP Martha Hall Findlay still flies out this year to join in the fun. It has all the makings of being one of our largest fundraisers for the C95 Radio Marathon this year and it’s because of one woman: Marie Therese Verma. She organizes the entire event and even hosts it in her own home! You will not find a more dedicated woman on the planet. She is an angel on earth and I’m grateful to have someone like her on my side as we try to kick cancer’s ass.  Because I’m in chemo I’m unable to attend this year, but I plan on being there next year. Fingers crossed.

Battle of the Pill Organizers

Finally - SLEEP!! After 2 or 3 days of being awake til 5 or 6 in the morning I had a good, deep sleep last night. I knew “the crash” was coming. You can’t stay on the steroid high forever. Might come in handy for getting house and yardwork done, but definitely not for sleeping. I fell asleep on the couch last night, cat curled up beside me, laptop on my lap, on a website I can’t even recall. At least I wasn’t blogging - I’ve fallen asleep doing that before and find it amusing that every time it happens and I wake up I have endless lines of the letter K. Something like this: kkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkk. Well, it’s exactly like that but it goes on forever and ever. I wonder why THAT finger is the one that pushes on the keyboard when I fall asleep? It’s always the letter K. Weird. But I never claimed to be normal.

Once I got myself into bed I fell to sleep quickly and managed to put in a 12 hour night. I’m guessing the same thing will happen again tonight because I’m so sleep deprived. My body isn’t one that can do without sleep. For the last ten years of this battle I sleep 10-12 hours if possible. Sleep is something we all need desperately for our physical and mental health and I never deny myself. Many days there’s just no reason to get out of bed unless I have to go to the bathroom. Why get out of bed if the cat is stretched out beside you purring while you give him a tummy-rub? I’d rather lay there nice and warm under my flannel sheet listening to the radio and petting the cat. Many times I drift back to sleep and wake an hour (or three) later. Anyone who knows me well knows you can’t call Lisa before noon and expect her to be awake Guess I’m making up for the times I used to get up at 3:15 to go do the morning show.

Today I’m feeling noticeably less energetic and have been suffering with some heartburn. I think I got my system off track by sleeping til 2pm because I didn’t have supper until after 7. I should have eaten much earlier and taken my Ranitidine because that likely would have shut down any heartburn right then and there. I learned my lesson and the extra-strength Tums are getting gobbled up today.

One wacky bright spot in my day came from my friend Trina who read my last blog posting and had a good laugh at my comments about my massive new pill reminder. She has one too and sent me a photo. I immediately grabbed my new “organizer”, took a picture and fired it off to her with a comment that I couldn’t even SEE hers. She sent a message back that I already knew the answer to: I WON. Mine is bigger….and the “Sunday section” isn’t even in it! Now you can see why I feel like an 80 year old…

Got a bigger one?

Chemo: Cycle 2 starts & hair falls

Day 1 - chemo day is today. I wake up in a fowl mood because I was laying in bed most of the night worrying about the chemo. I’m putting a lot of faith in the Ranitidine prescription that my oncologist gave me for my stomach upset. What if it doesn’t work? I hate the way my stomach felt the first 10-11 days.

Husband picks me up to take me for chemo and I start to cry as soon as I get in the truck. Being the wonderful man he is, he asks what’s wrong. I sound like a little kid when I tell him “I don’t want to get chemo anymore!” and start to snot & tear up. It’s hard for him to know what to say even though we’ve been through this before and we’ve had cancer in our life for almost ten years. I tell him I feel like I need a good cry and I want to get it all out before I get to the cancer centre. So, I cry. I cry for the first several minutes of the drive and at some point it stops. I hope it’s out of my system and won’t “lose it” at the cancer centre. It’s unusual for me to feel sad about going there because it’s like my second home. I know so many employees and they are all exceptional health care professionals who REALLY care about their patients.

Because I need bloodwork done to make sure my counts are good enough to proceed, I send husband back to work until the results are in. He has faith that Phlebotomy will be on-time and he’ll be back ten minutes before my chemo is scheduled to start. I think he’s wasting his time. That NEVER happens. Turns out he’s right. I’m called into a room ten minutes before my scheduled time and call to let him know. He’s already on his way because his plan worked.

I had some pain last time at my port, and after my infusion at the hospital last week, some of the Heparin flush oozed out and went interstitial (into the skin/tissue) so I had red slightly inflamed skin around the port for a day or two. I’ve had my port for almost ten years and they say the life-span of them is 1,000 pokes. How many times have I been poked in my cancer journey??! I realize that question can be taken the wrong way so let me clarify that I wonder how many times my port has been poked Through trial and error with the experience the chemo nurses have, we’ve discovered that even though my port takes a half inch needle, a three quarter inch needle seems to work better every once in awhile. I ask the nurse to put in a 3/4 and she gets it on the first poke. We’re off and running on saline.

Minutes later, my pre-med anti-nausea drugs show up in their little mini bag. There are two of them mixed together: Ondansetron and Dexamethasone. Twelve minutes later, the nausea meds are done and we’re hooking up for the 7 minute Epirubicin infusion. I stare at the I.V. tubing as the red fluid goes into me. I’m then set on the rinse cycle (I like to use washing machine lingo for my I.V.’s) to get some more saline flushed through me. I’m eventually set free and we head straight to the drug store to pick up even more prescriptions before returning home and before husband goes back to work.

I go to Walmart in the evening to stock up on Ensure and the Walmart brand that is similar and MUCH cheaper. Ensure is on sale for 9 bucks this week at Walmart, but their own brand is only 8. I get two of each because there are only 2 of their name brand left.  I use the High Protein version because I don’t eat much meat and because I’m not eating as much peanut butter as I usually do. I take the opportunity to get a few groceries while I’m there and after a talk I had with one of the pharmacists I buy a massive pill reminder. I have a 7 day one, but found with all the extra pills I need to take for nausea at home after chemo I was forgetting my OTHER pills. I shell out ten bucks for a reminder that has 4 segments per day. Now I feel even more like an 80 year old because of the size of my pill reminder but hope it will help. At least each day pops out so I don’t have to carry the entire thing with me!

I’m on a steroid-induced high all night because of the anti-nausea drugs (they are steroids) and fire off emails left and right all night to Glenda, the coordinator of my golf tournament. I also send out emails to every police officer or person who may KNOW a police officer because our Million Dollar Hole-in-One Contest requires we have a police officer as a witness. I go straight to a City Police Inspector, who I met when we were both honoured at the Mayor’s Prayer Breakfast last year. She immediately responds even though she’s on holidays and says she will find me a volunteer. I cancel all my other requests with even more emails.

By 2 in the morning my eyes are extremely tired but the body is still going strong because of the Dexamethasone.  As I’m getting ready for sleepy-time I discover my hair is really coming out now. I go to bed and read, hoping to fall asleep but am awake til after 5am.

Day 2 - I’m awake at 9am to take my first round of pills. Some have to be taken 30 minutes before I eat so I set my alarm, take the pills and wake up to another alarm 30 minutes later to eat half a banana while laying in bed, take more pills after eating and then roll over to attempt to go back to sleep. We’ve arranged in advance that I’m pre-taping an interview about my health and the upcoming golf tournament on C95 this morning. Rob, Shauna and Rambling Dave call at 9:07, we chat for a few minutes to make sure I’m awake and then start recording. We mostly talk about my cancer progressing and I plug the fact that we need more golfers and want to sell out the tournament.  The interview will likely run within the next day or two.  Normally it’s easy for me to go right back to sleep, but because of the D.D. (damn Dexa) I lay there awake listening to John Gormley Live and finally just give up and get out of bed at 11:15. Time for more pills and cereal half an hour later.

I once again spend a lot of time replying to emails, including proofs for our volunteer shirts for the LRGC and other little details and then need to run out for a quick 1 item grocery trip (how could I have forgotten MILK??!!). On the way home I decide I deserve a chocolate milk shake so I hit the McD’s drive thru and get 2 Shrek Donkey glasses with my shake. They are going fast and are the last ones. I kick myself that I didn’t collect the others when I see the glasses. They are nice heavy glasses. I recall the ones we had years ago at mom and dad’s with Hamburgler and the other McDonald’s “mascots” we had when I was a kid.

Husband comes home from work and we build a Dinner Rush meal of South Asian Beef & Onions together. So much easier when there’s two of us to make supper. I have no ambition.

My hair is REALLY coming out today and my head is itchy. As I type even more emails I scratch my head and each time pull out a handful of hair. I decide to create some more “hair art” and start saving it in a pile on a Kleenex beside me. Might sound gross, but I was trying to gauge exactly how much hair I was losing and if I should be buzzing it off. I take a picture of my hair on the Kleenex so I can show you (you can thank me later) how much is coming out now. Toonses the Driving Cat is trying to smell the hair while I’m taking pictures and he makes it difficult for me to get a clear shot, but I finally get it. Here’s how much hair I pulled out of my head in just a couple hours this afternoon:

Aren't I creative? Or just crazy?

Husband and I watch some TV on the PVR in the evening and I notice on a bathroom break that my nose is red just like it was last cycle at this time. That means tomorrow my face should be red too. I’m starting to see a pattern. The pattern IS broken in one respect though. The Ranitidine REALLY WORKS on my stomach. No pain, no yikky burps. Sweet relief!

Day 3 - Once again because of the Dexamethasone I am awake until after 5am, but today I’m able to go back to sleep after my half banana breakfast at 10am. I eventually force myself out of bed after the cat walks over top of me numerous times and scratches at the covers. If HE thinks I should get my arse out of bed, then I guess I better do it.  It is 1:30pm and I take my 2 pills and pace for half an hour before I can have anything to eat. I’m starving so I drink some strawberry-kiwi fruit juice (tastes like booze!!) to hold me over until I can shovel my cereal and fresh blueberries in with record speed. I watch Oprah and cry as I watch reunions between birth parents and their children who were given up for adoption. I watched all the episodes of Find My Family this year and found these stories to be very similar and just as emotional. As I watch I’m firing out even more emails. My hands are starting to hurt. I’ve been typing way too much on this Dexa high.

Many people heard my interview on C95 this morning. Several Hole Sponsorships come in because of it, and we get more entries. As of this writing we had room for FIVE more teams…that’s only 20 more people and we’ll be sold out! Thank you - everyone. I can’t possibly reply to all the emails so forgive me if I don’t reply to you. You can rest assured I DO read every single one and appreciate them so much.

An email comes in from Tasha in Calgary. We were in the TellHer2 documentary that Rethink Breast Cancer commissioned last year (www.tellher2.com, click on “The Documentary” and then click on my face).  Her husband Ryan passed away 6 weeks ago after battling brain cancer. He was diagnosed 12 years ago when he was a professional pilot. The cancer stole his passion of flying from him but he never lost his passion for life and living in the moment. He blogged about it and was a shining example of how to live your life - even when you’re dying. Before his passing Ryan wrote a book called “Stop, Drop and Smile!”.  The email announces that the book is ready for order, the website is up and running. I click on the direct link and see the most beautiful website EVER. Inspirational quotes beside gorgeous pictures of perfection of Tasha, Ryan and their now 5 year old son Talyn. Even though I’ve seen the photos before, the quotes beside them just add that special touch. I find myself near tears as they flash across the screen. Ryan had the most beautiful big smile. You couldn’t help but love him even if you never met him. I order two books - one for me and one for the Cancer Centre’s Patient Resource Centre that I will donate. I know that “Stop, Drop and Smile!” will give me inspiration and the kick in the pants I will need on “down” days. I then read the last 2 blog postings by Tasha and start to sob. I was feeling so sorry for myself and after reading what she is going through I feel like a useless knob. I have no reason to be so sad about my own situation. The questions and things her little boy is saying break my heart and make me bawl even more. I can’t even begin to imagine how she can answer some of his difficult questions or explain why it’s not possible to bring daddy back home. http://tashaengel.blogspot.com/ Read for yourself and you won’t feel so bad about your own life, yet you’ll be inspired by the courage and passion for life that Ryan had and how Tasha is doing the best she can to cope with this new, unwanted life change. I write her an email while I’m crying and later hope it made sense. That D.D. is turning me into an email monster.

I make a quick trip with the truck to run an errand and decide yet again that I must have another McD’s chocolate milk shake. This could be the start of Dexamethasone-induced cravings. The first time I was in chemo in 2000, I had a craving for Taco Time EVERY single time I had chemo. I NEEDED a soft taco and mexi-fries. Every week after chemo we’d head to Taco Time. Then, with no explanation the craving was for a Big Mac. Needless to say I did not lose any weight on chemo! It’s one of my biggest worries this time around. I lost 40 pounds in 2007 and I want to keep it off. Might sound trivial when I’m fighting stage 4 breast cancer but it’s ONE thing I hope I can have some control over. I tell myself as I sit in the drive through line that their milkshakes aren’t really that bad for you. I order a medium instead of a large (which is what I had yesterday) and decide to order the husband a McFlurry. Then the Filet-o-Fish calls my name so I order it too. I take my 2 pre-meal pills while in the line to pay. I know I can nuke it in the microwave at home in half an hour and it will be just like it’s fresh. I get home and the smell of the Filet-o-Fish is calling my name. I pick weeds in the driveway and then kill some time in the house before warming it up in the microwave. 45 seconds is way too long, it’s too hot and I must wait another ten minutes before I can eat it. GRRRRR!!! :(  Husband comes home with goodies (great minds think alike) of chocolate bars for after supper. It’s a feastival! Milkshake, McFlurry and chocolate bars (Caramilk for me). D.D. is at it again!! I realize I must do what I did last time and go straight to the fresh fruit salad I’ve slaved over instead of this kind of stuff or I’ll be a very unhappy girl at the end of chemo. I save the Caramilk and will enjoy it later. I have SOME willpower left…I think.

I announce to husband at 8:30pm that he is shaving my head tonight. He wonders if I’m sure and I tell him that I can’t take it anymore. Every time I’m in the washroom to brush my teeth, tons of hair is left laying on the counter and in the sink. The hood of my hoodie is full, the back of my clean fleece is matted with my own hair and it won’t even shake off. Here’s the “before” picture:

I'm doing my best to look happy...

I want it shaved off before I can change my mind so I dig out a sheet as he sets up the clippers and chair in the kitchen. Suddenly our roles are reversed. I’ve buzzed his head a couple of times and now it’s his turn to have a go at me. I ask him not to get even with me over the time I cut his ear with the scissors while trimming his ear hairs. He is gentle and finds the cutting easier once he’s created a “path” to follow. He does half my head and then takes some pictures.

Half of it's gone & holes in forehead are starting to show

 We video tape the entire head shaving, and he takes pictures at different stages along the way. He REALLY amuses himself by giving me a “Friar Tuck” look when he starts working on the other side of my head and stops to take more pictures while giggling the entire time. I can’t help but smile. I’m not crying, and he is doing the best he can to make the situation easier. It works. I wonder aloud why I’m not crying. I likely would if I was shaving it off myself but he has taken that pain away from me by offering to free me from my hair even though I don’t want to lose it. I take pictures of the hair on the floor and in the garbage can and say goodbye to it. Husband is smart because he immmediately packs up the garbage and takes it out so I won’t be reminded when going to put something in the kitchen garbage. How can you not love someone like that? I love him more than ever for doing a simple thing like that.

I shake off the sheet outside, then head straight for the shower to get rid of all the little bits of hair. My head feels like velcro as I try to shampoo the bristles of hair that are left. I decide I’ve grown my armpit hair long enough and shave my pits. I’m amazed at how I look like the hairy-pitted girls from Survivor after less than a month of not shaving. I instinctively reach up to squeeze the water out of my hair and when my hands get halfway there I remember I have no hair to wring out. How long will I do this simply out of habit?!

After shower I get into my sleeping clothes and take some photos of my shaved head to send to my parents and my brother’s family. I want my nieces to see me without hair before they see me in person so they aren’t shocked. I look like my brother with my head shaved and they think it’s funny. Only problem is that I have three round holes/dents in my forehead from where the halo was. I was in a halo for three months when I was first diagnosed because my neck collapsed from the cancer eating away my C5 vertebra, hence the holes in my forehead. Now you can even see the holes behind my ears, and a bump that I suspect is a bony met on my skull.

3 holes in forehead & it appears I'm missing an ear

I upload all the photos to my computer and see why husband was entertained by the Friar Tuck. I watch the video and wonder why it is that I was not upset?! WTF? It doesn’t make sense. I thought maybe it would hit me when I looked in the mirror but I was ok. I still am. I still have my eyebrows and eyelashes (for now) so tomorrow I may put on some makeup and see how I look. Maybe I’ll look better than I thought possible. Next on the agenda is to get in to see my hair dresser to get the bangs of my wigs trimmed.

I decide to keep going with my computer crazy couple of days and upload some of the head shaving photos to my Facebook page. For some reason none of them will upload. I take it as an omen that they should be posted on my blog first and start to write this. It’s 5:04am and I’m still on a Dexa high as I finish this. You get the first look at me with no hair….and no makeup. Now I REALLY look like I have cancer…