Friday July 17th – Phase 1 Complete and I am done with radiation – 30 days complete!
The Phase 1 of my treatment plan has come to close and by all accounts it has been extremely successful. Very little nausea and tiredness. Hair loss is moderate but today from the front I look pretty normal and my cancer comeover seems to be working well, although I do have a fairly large bald spot in the back that the comeover is too thin for. I am relieved I made the decision to hold on shaving my head because I didn’t need to shave it. I have had no real impact to my short term memory or problem solvinng and my headaches have been extremely minor. All three symptoms I was told would occur during radiation. My bloodwork came back extremely well (there were a lot of numbers to look at), with me being well with normal ranges. Jared asked the doctor about a specific gene that can be found in brain tumors. Apparently patients who have this gene, tend to respond better to treatment and ultimately have higher rates of survival. Dr Lim checked and I have this gene. It doesn’t mean that I will absolutely respond positively but it definitely is a good indicator. It was a great last appointment.
I brought lunch for my radiologist team and Dr Lim, my oncologist and Terry my RN. Each Friday at my work was “treat day” where someone would bring in treats. I didn’t want to change that routine so I brought healthy treats each Friday to my radiologisits. Being the last day I had to bring lunch. Brought my famous Indian Red Quinoa Salad, Muhuarra Dip, Rice Chips and Organic Apple Cider. Watch for recipes coming soon. I hope everyone likes it.
I am a true Canadian and thank you gifts and cards are things that I believe are critical. I brought Terry and Dr Lim a bottle of BC Red Wine and the Book Anti -Cancer. Dr Lim indicated that I didn’t need to that. I responded “I know that this is your job, but this work is the most important work that has ever been done for me, for us (Jared was with me), and for my family. Thank you for the care you have given me and I hope we can meet next time under different circumstances.” In my head I thought – The least I can do is buy you a book and some wine. Dr Lim was appreciative and indicated that he would contact me to present at a radiation orientation for new patients. I am very excited about the opportunity to give back in this type of way.
On the way out I bumped into my 10 year role model. She was waiting for her first meeting with her nurse and oncologist. It was great to introduce her to Jared and have another moment to talk. She told me “We are the people they are going to be writing books about.” There is no doubt that we will be.
On the “menu” that I gave to my medical team with their lunch I put this quote from the book Daily Inspirations by Robin Sharma – it’s from September 21
“There is but one failure in life and that is the failure to try. The greatest failure in life is the unwillingness to play your highest game and walk toward the places that frighten you.”
I thanked my medical team for walking with me on this first phase. I believe that they gave me their highest game and that I continue to give my highest game to match their efforts.
I also thank you for walking with me and for continuing to walk with me as we move to Phase 2
It’s time to celebrate this important milestone. Jared and I recognized this milestone with a donation to the Woloshyn’s Warriors Tour. Consider marking this milestone with us by making a donation - details under the “Support Alyson” tab. Or you can sign my dedication page for the LIVESTRONG campaign – check out the main page for the link to the Woloshyns- Warriors Dedication.
Details will come next week about Phase 2 but this weekend I am going to focus on being present in this moment of health and sucess and will give thanks for the success of my treatment and for the gifts of chemo, radiation, support and other resources I have been given to make me a strong survivor.
Thursday July 16, 2009 – Found a picture of me in 10 years
My second last day and decided to go on my own. My appointment was late 9:45 am but I went early to get blood work done. My Naturopath has been monitoring my blood work and being a numbers girl, I like watching things other than just White Blood and Red Blood Cell counts. So I checked off a few extra boxes, added a couple things to the bottom – figure I better get the most out of my Health Care Dollars. When the lab technician came to draw blood he pulled out 7 tubes of blood - my ND said maybe I was a little too check happy. Looking forward to getting my report tomorrow.
In the waiting room for radiation there was a mother and daughter talking about some research regarding brain tumors. I engaged in the conversation and found out the daughter had been diagnosed with a Grade 3, mixed glio in 1999 at the age of 31. We had a great conversation and it is amazing to finally meet someone, like me – Female, diagnosed young with a glio and who is doing extremely well. She has been part of some exciting research and is just starting the program I am finishing. She says she is doing GREAT and I believed it. It was so uplifting to see a 10 year survivor in person and to give me a role model for where I will be in 10 years. I gave her my contact information and I hope that this will be the start of a great friendship.
Monday July 13, 2009 – The Final Countdown
Only 4 days left to go. I really can’t believe how fast it has gone. I so happy that treatment has gone so smoothly. I had imagined that treatment would be “easy” for me. I had envisioned that my quality of life would stay the same and for the most part it has. I believe my wholistic and active approach to my health combined with positive thinking and tons of great support from friends and family has made this a relatively painless process. I have had a couple of off days, my first day when I mistook my chemo, learning the hard way that chemo is meant to be taken on an empty stomach – Have not made that mistake again. Yesterday I had a recuperation day, and pretty much slept the whole day, but there were Sundays before treatment that I took a good afternoon nap. But two days out of 30 is not so bad. Even more incredible is that today I am having a Bad Hair Day. I woke up and my hair was as poofy standing up. Tried to brush it out but couldn’t so I put on a hat. When I took it off at radiation and looked in the mirror, I though “Wow my hair looks awful”. Later on I thought – “I can’t believe I have had 26 days of radiation to my head, and have taken chemo for 41 days and I still have enough hair to have a bad hair day.” Absolutely a remarkable journey.
Wednesday July 8, 2009
Mel and Cam came with me today. Got a great breakdown of the radiation process. My mom went through radiation for a brain tumor about 14 years ago. I never saw her radiation treatments, but Cam described it like a medieval device, with full armour and heavy machinery. He was amazed with the difference in my treatment, specifically how advanced and easy it seemed. One of my radiologists, Maureen, walked both Mel and Cam through my treatment, showing them scans of my brain and the fields they are using. Tomorrow we start the final phase of radiation, which is more concentrated on the specific tumour location in my brain. Up to now they have been treating a large area in the right front of the brain to ensure that any potential “fingers” from the tumor are sealed off. Tomorrow we will get really focused on the area where the tumor is for (hopefully) my final 7 treatments.
After radiation we headed out to Drumheller to the Royal Tyrell Museum. I am always impressed with that place. Coming out of the museum it was a beautiful day. I looked at my Blackberry and noticed a red exclamation point over my weather application. Clicked on it “Tornado Warning for Calgary”. Awesome, we are about to drive across teh praries in a tornado warning. We got in the car and headed West. Sky turn dark and it started to rain. Saw some incredible lighting across prairie fields and a some pretty spectacular cloud formations, luckily known in the shape of a funnel. The canola fields looked incredible under the dark sky. Luckily the warning turned to a watch and we barely even got any wind, just a few great dumps of rain which is desperately needed. Calgary weather – gotta love it.
Tuesday July 7, 2009
Another day on my own and it was full day – Left the house at 8:20 am and just got in at 4:30 pm – it’s like I went to work. It was my office’s annual Stampede Potluck today – Enrolment Services at U of C has EPIC potlucks, so there was no way I was going to miss it. My radiation was at 9 am and the Tom Baker Cancer Centre is only a 15 minute walk to the U of C , so as soon as I was done I walked over to the office. Of course I brought a lovely spinach salad, with apple cider (vinegar and juice), olive oil and basil dressing. This years potluck had grills brought in and the Hot Dogs were flowing. Now I love a good hot dog, in fact one of my favourite snacks at U of C prediagnosis was a Hot Dog wrapped in a croissant that I would get in the food court. As I was helping cook up Stampede Potluck Hot Dogs, I told a couple members of my team “This is a hard temptation, these hot dogs do smell great.” A teammate replied “You aren’t going to have one. Isn’t there room for one cheat.” Of course there is, but the reading I have done gives me too much information that I can’t ignore. Witha hot dog, main ingredients sugar and processed meat – both are breading grounds for cancer, and there is no way I am giving my cancer any additional ammunition or allies in it’s fight. I replied with this information and closed with”If I am going to cheat, it’s going to be a slow cooked beef on a bun at Stampede or a $10 piece of chocolate cake – It’s not going to be a Top Dog – It’s going to be a worththe cheat.” Another teammate said he would eat enough hot dogs for both of us – I smiled.
After the potluck I headed to my Naturopath for my bi-weekly Vitamin C treatment. It takes me about 30 minutes to walk from the bus that brings me home from my ND, and on the way (seriously it’s on the way) there is a fantastic gelato spot – like 100 flavours of homemade gelato. I stopped and got a small sugar free chocolate in a cup with a mineral water - And yes I checked to make sure it was sweetened with natural sweeteners, no splenda, no aspartame, before I ate it. Now that is the type of cheat I am prepared to make.
My brother Cam and my sister in law Mel get in tonight – looking forward to hiking, stampeding and catching up.
Only 8 more days of radiation left!!!! July 17th the last day
Monday July 6th, 2009 – Starting to slow down
Today is a good day. Have a couple days betweenvisitors. Nicole left yesterday after a fantastic 10 day trip. We did some great activities but also spent a lot of time catching up in a way you can only do when you have time to just be with each other. My brother (Cam) and sister in law(Mel) get in tomorrow night – Mel has never seen the Rockies and neither Cam nor Mel havebeen to Stampede so I am looking forward to a great visit with them. Today and tomorrow though it’s me on my own, which is perfect. Although I am an extravert, I do enjoy time to myself and I enjoy the process of going to through the routine on my own from time to time.
I have noticed, starting the end of last week, that my energy is definitely coming down. I am a pretty high energy person, so a little less energy is probably a good thing especially for people who hang out with me but it has been a bit of a challenge for me to get comfortable with slowing down. A few weeks back I was running, biking and this week I am feeling like I couldn’t manage that, bothinterms of energy and leg strength – which is a side effect I am told of Decadron (steroid). There is a part of me that feels I should be doing those things, because I know how important exercise is, especially exercise that gets your heart rate up. I am still doing lots of walking but it’s not the same as a good run or bike. I know that although I feel that I should, that my body probably couldn’t, and I know I need to give myself a little bit of breathing room for a few weeks. I do start Week 5 of radiation thisWednesday, and I know that my body has been working pretty hard over the last 2 months, recovering from surgery and now managing treatment, so a little fatigue just means I am doing what I need to be doing. Only 2 more weeks left, then into recovery – I will start running and biking then.
June 30th, 2009 – Speeding Up and Feeling Great
The routine seems to be getting easier on Day 18. Today my radiation took 6 minutes according to Nicole, one of my closest friends who was my radiation buddy today. I took my blood work to my Naturopathtoday for review. My radiation team has told me my blood work is all great but it’s nice to have my ND go through it with me line by line, explain the different things and also explain what the scores mean. He says I am doing remarkably well. In fact in certain areas he wishes that his “non” cancer patients were as strong. Some small things we are monitoring but nothing too closely. I am happy that the work on my nutrition and supplementation over the past 8 weeks is paying off. Thanks Align Nutrition, Grassroots Naturopathic, and Vitality For Life for the great advice that is complementing my radiation and chemo so well. It’s nice to know that the good state of health I am feeling, is translating in the numbers and reports to validate that I am in fact, doing very well.
June 24, 2009 – The Half Way Mark
Today marked Day 15 of 30 for radiation. It’s awesome that tomorrow I will have less radiation to do than I have already done. My mom came with me today. I wore my WoloshynWarriors T-Shirt that I also wore on Day 1 and we took some great mid way photos. It’s amazing that I am still feeling very few side effects. Had a busy but great day withmom. Radiation, lunch at Extreme Bean by the river and then a good appointment with my Naturopath. Did a ton of walking and even stopped for Gelato. A perfect midpoint day. 15 Down, 15 to go.
June 23, 2009 – DAY OFF
The radiation machine had maintenance today, so I had the Day Off . Did Mom and I ever take advantage of it. Went to work for a baby shower. My mom met my work colleagues and we had an amazing pot luck. I won a prize at the potluck for me great measuring and guessing skills. We then Rocked Out at FleetwoodMac. I hope that I am that cool when I am in my sixties. I am sure I will be. It was a great show even if they didn’t play White Wing Dove. They did close with – Don’t Stop – my mom and I danced it out to a new theme song for me.
June 22, 2009
Today my mom took me to treatment. My mom came in on Saturday and it’s the first time I have had an immediate family member (outside Jared) see me since treatment started. We had a bit of a bumpy start as our bus was late, which made us late, by about 5 minutes. Stacey didn’t mind and took us in right away. I hopped onto the table, Stacey commented on my shirt and how much writing there was on it. Today I was wearing one from U of C, that was signed by my entire office – I haven’t even finished reading it yet – It is amazing with drawings and probably over 30 entries. Then I heard the radio – and what was playing – Livin on a Prayer. If you don’t know the significance of Livin on a Prayer, well visit www.tumorhumour.com for the new lyrics, specifically for me.
My mom, 14 years ago, also went through radiation for a brain tumor. Hers’ is a secondary tumor which means it came from a primary somewhere else in her body. We still don’t know where the primary is, but it’s been dormant for 14 years and really that is all that matters. My mom commented on how many advances there has been in 14 years, as everything from the machine’s precision, the lasers and my mask were all very different than her experience. When I was diagnosed my Chemo Doctor did indicate that there had been huge advances since my mom went through treatment that would make my treatment a much easier process. Another thing to be grateful for and I am grateful for my mom’s contribution to my treatment. I know that during her treatment they would have been studying was to improve things. These improvements are definitely personified in the technology I am getting. She has contributed to these technological advances that I am now reaping the benefits from. Thanks Mom!
On the way home, my mom indicated to me that she got a little emotional during my treatment. As I was going through radiation today, knowing that she was watching, I thought that it might be emotional for her, both because I am her daughter and it might bring up old memories. She told me “It got real” for her. I told her that we can’t be afraid or sad about the radiation or chemo because these are things that are going to make me better. She understood, but I can also understand how she felt, especially when she has been down a similar road herself. Nevertheless I changed the subject and we started our walk home.
However, I do admit, it kinda got a little more real for me as well today. This morning as I was getting ready, I ran my fingers through my hair and on the right side, where treatment is happening, quite a bit of hair came out. The silver lining though, is that the hair was silver, and the right side of my head was where my grey patch had started so at least radiation is killing my grey hair. When I told Jared, he told me the hair was thining and it is noticeable. I knew this was going to happen, and in fact I have been waiting for it. The radiation is suppose to be strong enough to kill a tumor that is deep in my brain. I hope that it’s strong enough to kill some hair follicles located at the top of my scalp.
Another real moment for me was that I needed to take a nap today. I had plans to go running (I have been out a few times since treatment has started). I hadn’t gone in a couple days and felt I should. But after lunch I was zonked – Slept for 3 hours, after getting 7 hours last night. They told me at Week 2/3 I would start needing afternoon naps. For an active person, not having energy is going to be an issue for me, especially when there are things I want to do. So of course I immediately started to think that this nap “meant something” bigger in terms of my health, that this was the start of me loosing my energy maybe for awhile. I asked Jared “What do you think that means, that I slept for 3 hours.” He calmly said “It means you were tired.” Hopefully I can go for a run tomorrow, or maybe I will walk or sleep – Whatever my body tells me that is what I will do.
So lucky Day 13 for radiation – a mixed bag day – a good day – a real day.
June 18, 2009
Today I chose to go to radiation on my own. I am an extravert, but am also independent and I felt I needed a day to go through radiation independently. About once a week I have hospital errands – today it was blood work and trying to connect with my chemo nurse, so it felt like an appropriate day to go on my own. The day started a bit bumpy as I almost missed my bus because I overslept – HOORAY. Although I didn’t want to be late, sleep has been a battle for me since I was admitted to hospital on April 24th because of the steroid that I am on (called Decadron). I have had maybe 2, good sleeps since April 24th, most nights it’s only 4 -6 hours. My Naturopath recommended Melatonin, and last night I got the dosage right, zonked out for at least 8 hours- It felt wonderful.
Despite a rocky start, made it to Tom Baker Cancer Centre (TBCC) with plenty of time to complete my hospital errands before radiation. It was Stacey, one of my radiation tech’sbday today – so my radiation bay (Bay 5) was all decorated up. I made a mental note to get a card for the next day. The techs all commented that I wasn’t wearing one of my T-Shirts with an inspirational message and signed by friends and family - but I was – it was a tank top, just under my T-Shirt. They were relieved that I hadn’t run out of fun shirts to wear. They screwed me into my mask, locked me down on the table and away we went. It is Day 11 of radiation, the routine is pretty much set.
“STOP STOP STOP” Tracy (radiation tech) yelled part way through my dose and I heard a screeching, grinding to my right, as the table, that my head is bolted to, went crashing into something. I wasn’t sure if the radiation machine was going to crash into my head. I became very aware of how tightly I was locked to the table, and realized if something was coming at my head, well, I wasn’t going anywhere. I was definitely nervous.
However, it the grinding sound was just the radiation machine getting hit by the table. Not quite sure why or how the collisonhappened but my head was no where near the accident, so it didn’t matter much to me why the two had collided. They lowered the table, unscrewed my head and told me that they needed to reset. I took my gear back to the waiting room. I was quickly called to Bay 2 to finish the round. Bay 2 is beautiful – lighting was all dimmed, with panels on the ceiling that had flowers and trees on them. I commented that it was a nicer room than 5 - they were also playing Def Lepard which always makes a room a little brighter. They screwed me in, finished my dose in about 3 mintues and I was done. I will definitely ask tomorrow what happened and tease my technicians on Bay 5 – The worst part is I think they were being “audited” today as there was a new person in the room watching, always Murphy’s Law that something like that would happen when they are being watched. Hopefully it wasn’t too big an accident.
June 15, 2009
Day 8 of radiation treatment, Day 12 of Chemo treatmnet – about 25% down. Things are going extremely well. I have had 3 of my “Bakers Dozen”, also known as my university girl friends out to assist in my first week. Kathryn Bean was in from Toronto, Angela Wright from Kelowna and Davis Neable from Vancouver. Ange is also my nutritionist and has a fantastic website – www.alignnutrition.com- which is packed full of great recipes and advice.
I am feeling exceptionally well. I went for a run yesterday, did about 5 km of running and walking but mostly running. Ange has left me with some great knowledge about good food choices and that is no doubt ensuring that I am feeling energetic and able to manage a “normal” day. My team has indicated that it is at the 2 – 3 week mark that I will start experiencing more symptoms – so I figure I better be active everyday that I can. That activity will only help me make tomorrow an active day as well. This week is a 5 day radiation week – no days off, so we will see how that goes.
June 3rd, 2009
I started formally my treatment today which will run for the next 6 weeks. My Allopathic Plan (medical plan) consists of two parts
1. Radiation for 30 days, pretty much M-F from June 3 – July 17. I have the odd day off for machine maintenance and holidays. All my radiation is done at the Tom Baker Cancer Centre in the morning. A typical treatment will take about 15 minutes and I am normally there for up to 30 minutes with wait times. TBCC is very close to where I live. I walk most days, takes about 40 minutes. Additionally there is a great shuttle bus, the 419, that literally gives me door to door service.
2. Chemo- I am on a chemo drug called Temodol which I will take everyday for the 6 weeks of radiation. Temodol is taken orally, so I can take it at home and my current dose is a very low dose chemo. Only tricky part is that I need to take it 1 hour before radiation and on an empty stomach, which means either 1 hour before I eat, or 2 – 3 hours afterwards. All my radiation appointments are in the morning so it makes my morning eating scheudle a little more complicated, but I am sure once I am in the routine that schedule will work itself out.
My last day of scheduled radiation and chemo is July 17th. After that I get 4 weeks off and then will go back on a chemo plan for a period of 6 – 12 months. However that chemo plan will be determined in August.
June 3, 2009- Originally sent via email to a group of friends after I completed my first day of radiation.
Hi Everyone – Sorry for the mass email – I have joined some key people together to send out a mass update. I have completed my first “treatment”. Went with my friend Susie Dwyer – We walked there and back and it was beautiful. About an one hour and fifteen minute round trip. Radiation was a easy – Bright blue/white lights flashing and shining on me – didn’t feel anything. There was a radio playing in the back groung – It played Great Big Sea – When I am Up I can’t Get down – I tapped my foot. Today I was there for about an hour – but tomorrow they think it will be about 20 minutes.
I wore one of my T-Shirts and didn’t have to take it off nor wear a gown. I wore the bracelets I got from both groups of girlfriends on our 30th birthday weekend and brought other important mementos, like opals from my parents, Cam, Jared and my late grandparents. The only real challenge was that I had imprints from my mask afterwards on my face because it was a little tight – but no big deal. It didn’t feel tight, but they are going to look at it tomorrow.
Unfortunately I misread my instructions for chemo and took it on a full stomach, not an empty stomach, so unfortunately I am pretty nauseous this afternoon and tired - However I can start watching all those videos that all of you have sent me. I will be comfortable on the couch watching that and Video on Trial – WAIT – Ghostbusters just started on AMC – Right on! That is what I am doing this afternoon – Who you gonna call – GHOSTBUSTERS! They told me that if I felt sick – I should leave things like the dishes. So I am ignoring the mess in the kitchen! I asked for a prescription to give Jared to confirm that.
I have my schedule and looks like most of my appointments are in the morning done by 11 am – which is great – and gives me time to rest if I need to. So there is the update – Thanks for all your warm thoughts today. I know you are all thinking about me.
Going to have a nap - Talk to you soon
Alyson