June 27th – Round 2.12 – I AM DONE!!
Well Phase 2 is finished. I am officially done with chemo – Hooray!!
Cycle 12 was surprisingly easy. Go figure that on my last round I would finally get the right mix of stool softeners, laxatives, flax seed and fish oils to eliminate constipation. Fatigue was of course an issue but it was really only the first two days that were the toughest. Blood work was fairly good, although my CRP went up again to 19 (9 points since last month) and my Iron dropped to 7 from 22 the last month. My oncologist told me that I needn’t worry about either. Most likely the CRP has resulted from the elevated toxicity in my body from all the treatment and potentially some of the stress from all my volunteer activity in the last month. Jared explained to me that the low iron is probably just because my iron stores are working on over drive to keep my Red Blood Cell counts up (which are still great) and the stores are just finding it hard to keep up with demand. So luckily this was my last round and my system will have time to properly recover without being taxed again in 3 weeks.
So what is Phase 3 you ask? Well Phase 3 is Life With Cancer. In terms of treatment right now I am done and I move to a monitoring phase. I have an MRI in August and then will have MRIs every 3 months for a year. At the year mark if things are still good, meaning no new cancer, then I will be given the choice to move to MRIs every 6 months or stay at 3 months. And this monitoring will continue indefinitely as we never know when a recurrence might happen.
Although treatment has been “successful”, all that success really means with Brain Cancer treatment is that you made it through to the end. The goal of treatment is to delay the recurrence for as long as possible. The goal of this treatment has never been to cure the brain cancer or put it into remission. I knew going into treatment that “cancer free” or “remission” were words that I would not hear when I finished my 12th cycle. However “no new cancer” is still a good prognosis and I hope I will continue to hear that for years to come.
So what do you do when a recurrence happens? Well that depends on what new treatments can are available when that time inevitably occurs. If a recurrence were to happen right now, there is currently no approved treatment in Canada that I could take to help me. There are some drugs that are showing promise such as DCA and Avastin, but although approved in some provinces to treat some cancers, they are not yet covered for Brain Cancer anywhere in Canada. Which means that if the recurrence happens before research can provides new treatment options I will most likely have to pay out of pocket for life saving treatments, which from my research can run upwards of $10,000 a month. It is why my fundraising for Brain Cancer Research is so important and why I have started to try and become more knowledgeable on how Health Canada and the Province of Alberta approves new treatments. I can only hope that if I stay the course holistically, I will buy enough time for something new to come along, so when recurrence rears it’s ugly head, there is something I can take that doesn’t require me to ask my loved ones to choose between me and mortgaging their futures.
But although a challenging future prognosis, I am choose to continue to work to live completely in the present moment. I am keen to see how my energy rebounds and will be starting to food journal more consistently to monitor my moods and supplementation to hopefully get my energy back up. I am also interested to see if I can push my brain a little more during the day, and will be investing more in my volunteer roles with YACC, ACF and the Calgary Stampede. I am going to push my body by committing to daily weekday Yoga practices as well as signing up for more athletic competitions such as a 10 km race this September. I am excited to find some more time to pursue projects that allow me to share my writing and speaking with more people. And finally I am excited to have a brief opportunity to travel, which I have never done, while I get my body prepared to go back to work. Although I have a timeline for when that return to work would ideally be, I have learned that I have to take things day by day, and that timeline will depend on the results of upcoming MRIs as well as how my body and brain recover during the upcoming months. I have been told by my medical team that if I have an “aggressive” glio, it will likely pop back up in the first 8 – 12 months post treatment. Although they have also told me that it is highly unlikely that I have an aggressive glio based on how well I have done in treatment, still seems premature to think about rushing back to work with this critical milestone still left to achieve.
I am not sure what I am going to be doing with the treatment updates or my blog now that treatment is over. I know that I will continue posting updates but I need to retool the focus of the website a bit now that I am in a new era of my life. Consequently I am not sure when another update or blog will occur. Dr Matt, my ND, has given me strict instructions that the first thing I need to do when I am done treatment is take a vacation from cancer, so that is what I plan to do, so it might be sometime before I post again – however I do promise that I won’t be gone for long.
I received a card from my parents, brother and sister in law yesterday attached to a beautiful arrangement of fruit that I think best summarizes what Phase 3 is going to look like. The card read simply “Good Times Are Ahead – Love Mom, Dad, Cam and Mel” and I believe that they are. I look forward to sharing those good times with you soon.
Until I post again….
June 4th – Round 2.11 – 1 more to go
Confirmed at my appointment on the 25th, that indeed this past round was Round 11 and I only have 1 more round to go. Hooray – Needless to say I am looking forward to Sunday June 27th, the day I will officially be done with chemo.
As with last month, things were pretty much the same in terms of the dose and constipation however I only lost 1.5 lbs. I was going away to a retreat over the weekend so I opted to start my chemo on Tuesday May 25th instead of my regular Thursday start, which meant I finished Saturday May 29th. On Monday I experienced a rough day of nausea, vomiting and fatigue, so much so that I had to miss my SCUBA course. Luckily my instructor was super understanding and said I could make up the class at the next one. Tuesday June 1st through yesterday I was also felt quite tired and I spent a lot of time on the couch. Luckily today I woke up feeling much better and hopefully I am back to my normal “energetic” self.
The MRI I had on May 18th again came back clear – no new cancer. My oncologist did indicate that there is some brightness on the scan around the cavity, however she also indicated that this brightness was there on the last scan and it is most likely scar tissue from the radiation so there is nothing be concerned about. I always see my nurse right before I see the oncologist who reviews my questions and does a general once over with me – blood pressure, weight, temp etc. I always ask for copies of my blood work to bring to my ND and this time my nurse gave them to me before I saw the oncologist. This appointment I waited about 40 minutes between seeing my nurse and oncologist, so I had time to review my results thoroughly. Everything was great as usual, except one number stood out – my CRP (C-reactive protein) reading. This is a reading that I actually added to my blood work to measure. In Anti- Cancer (pg 39) the author discusses the role that inflammation in the body plays in cancer cell development and he provides a “formula for evaluating an individual’s risk” of potential tumour recurrence and CRP is part of that formula. Ideally you would like your CRP level to be less than 10 mg/l. My levels have always been super low, I think my highest has been 0.7 mg/l. Well when I looked at my blood work on May 25th, my CRP sky rocketed to 10.1 mg/l. Needless to say I was a little nervous, considering I had just had an MRI done. Since my MRI came back fine, my oncologist and I discussed what could have caused the jump. The day before Jared had taken me on a 28 km mountain bike and I was pretty sore from the 4.5 hour day. Since I had done blood work that morning, she figured that it was probably the exercise that caused the jump and recommended that I maybe take it easy with the exercise before I start chemo. When I came home that night, I told Jared that he kicked my ass the day before and I had the blood work to prove it!
This past weekend I attended a retreat in Abbotsford, BC for Young Adults with Cancer, hosted by Young Adults with Cancer Canada (YACC). It was definitely a powerful weekend of sharing, laughing, talking and crying. I met a group of incredibly strong young adults who inspire me beyond words. Wish I had known about this organization a year ago when I was diagnosed. If you know someone 18 – 35 who has cancer, please pass on the YACC link and encourage them to use the resources available. Also feel free to tell them to contact me, I would be happy to give them more information.
It’s the final countdown – do de doo dooo!!! My final round is June 22 – June 2.
My final treatment update will be up before June 30.
May 7th – Round 2.10 – only 10 nights left
Treatment for this month was same old, same old. Same dose, same constipation, same appetite, same 2 lbs weight loss. Fatigue didn’t really hit me until Monday morning, in fact on Friday and Sunday while on treatment I got out for run, so pretty good round all things considered.
Today is the one year anniversary of my diagnosis. Tonight I am going out for dinner with some close friends and my brother to celebrate one year in the clear. This is my first anniversary and I woke up feeling a mix of emotions. This morning my brother and I attended my favourite Yoga Class. I really like the instructor and at the end of each class while we are in meditation she always shares a reading that shares a lesson. Although her readings always make me think, being that we are only in a meditation for a few minutes, I have never had an experience where the reading has stirred emotion. It’s funny how the universe sometimes knows what you need even when you can’t see it and gives it to you in the most unexpected ways. Apparently I needed a release. The reading (which my instructor posts on her website), was about how you respond to adversity. It was a beautiful analogy of how one chooses to face adversity and today of all days, it helped me realize that the reason I was a mix of emotions this morning, was because unlike my birthday, this anniversary is not one that I am excited about. Although I am excited that I have no new cancer, today will always be the anniversary of the day I was told I have cancer and until there’s a cure, on this day in years to come the best I can hope for is yet another year in the clear. The reading helped me recognize the negative aspects that today also celebrates and allowed me the platform to have a moment to silently grieve about what today really signifies for me.
However on a positive note, I have discovered that I think, I am going to be finishing chemo earlier than I thought. I have always known that I will do 12 months of chemo, so if I started Phase 2 in August 2009, 12 months would put me to end in July 2010. However I forgot that chemo isn’t once a month, but rather once every 3 weeks. Last month when I put up Cycle 2.9, I thought I had jumped a treatment round someplace being that in my head I still had a cycle in May, June and July left to do so I thought last round must be round 8 not 9. Today when I was writing this update, I checked back over my treatment updates and recounted. Because it is 3 weeks on 1 week off cycle, I actually somewhat double upped in April and I am fairly confident I finish in June NOT July. I am going to confirm with my oncologists at my next appointment, but am pretty excited that when I go back to Ontario in July I might be able to have a “I’m Done Treatment” party when I head back.
Next MRI is scheduled for May 18th and the next round will be May 27 – 31.
Next update will be up sometime before June 7th.
April 12th – Round 2.9 Done and Done
Another month, another round of chemo done as of April 5th. Blood work again was fine and my MRI scans continue to show no new cancer. Cavity seems to be healing well and this time I was able to ask a few more questions about the hole in my head – like how big is it? It’s about 2.5 cm by 1 cm. Being that nerves don’t heal, that cavity is with me forever. I think I’ll use it as an excuse for my poor math skills from now on.
Round 9 was pretty much same old same old. Tuesday April 6 – Thursday April 8th, the days immediately after I was done treatment, were rough energy and nausea wise. My appetite over those days was really off. Wednesday morning I woke up and felt hungry but my stomach was a bit upset. So I started with tea and water. About 30 minutes later I thought I would try some oatmeal, but as I reached for the bag my nausea grew and off to the bathroom I ran. Decided to just stick with water for the rest of the morning. By afternoon digestive cookies were sitting ok so decided to try dinner which also went ok. Thursday combine the lack of eating over the two days previous with fatigue as my body detoxes the chemo, well I felt pretty wiped. However by the end of the night, after a nice pasta dinner Jared made for me, my energy came back and Friday I started to feel better, even got out for a run.
Got the results of my metals test from my naturopath and turns out I have fairly high levels of gadolinium as well as elevated levels of mercury and lead. The mercury is a bit of a mystery for my ND as I don’t have any filings because I don’t have any cavities. We both agreed that it was probably from fish and he recommended that I try to stay away from bottom feeders like Shrimp and told me when picking fish use SMASH to choose – Salmon Mackerel, Anchovies, Sardines, and Halibut. Of course all of these should be fresh and not farmed. Mackerel, Anchovies and Sardines are all new for me, but I will give them a try.
To help with the metal detoxing I have started Chelation Therapy to help rid my system of the heavy metals. It’s another IV process. I go into Dr Matt’s office, he pops in an IV and about 60 minutes later I am done. In short the chelation therapy will work to bring the heavy metals out of my blood and then over the next 2 days it’s important that I excrete the metals in the form of urine, stool and sweat. So lots of water, high fibre foods, exercise and infra red saunas on those days. Gadolinium is one of the metals that is used in the contrast that is injected during my MRIs so I will be going for chelation once a month and in months I have MRIs I will go the day after my MRI. Unlike my Vitamin C IV therapy I did during Radiation, Dr Matt has indicated that Chelation Therapy is a little tougher on the body so he doesn’t want to do more than one session a month (away from chemo) while I am still going through treatment.
My next round is April 29th – May 3rd. No MRIs scheduled for this month.
Next update will be up by May 10th.
March 11th – Round 2.8 Complete – 120 nights to go
Round 8 is done. The dose stayed the same and blood work was pretty well the same as last time with a small increase in my platelets which were down in February. I went back to the half dose of the Sofran which is the higher strength anti-nausea, consequently there were no difficulties with vomiting. I had my regular problems with constipation (which is somewhat of an ironic way to put that), but my diet and supplementation adjustments seemed to help me get back to regular functioning more quickly after I finished than in previous rounds.
My fatigue and nausea seems to be persisting more between cycles. I have noticed that my appetite has been decreasing and that I have been feeling more nauseous more often when I am not on chemo. Also my low energy days are becoming more frequent. Unfortunately it is becoming more routine for me to wake up and feel like I have been hit by a truck before I even get out of bit. The challenging part with fatigue is that it hits me on a physical and mental level. So even things like reading, writing or working on some programs for my volunteer activities I can’t focus on. Just a lot of TV, and there is really only so much daytime tv one can take. My oncologists don’t think the nausea between cycles is related to chemo. However they have indicated that my fatigue is chemo related and unfortunately it will probably get worse before it gets better. I started treatment on April 23, 2009 when I was admitted to the hospital, so when all is said and done it will be 15 months of treatment. I have completed over 70% of it which is great. However just like in a marathon, it’s always those last 10 km that seem to hit you because you are so tired from the first 30 km. I am definitely aware that I have 4 more months to go and I know I still have a ways to go before I see the finish line. I have started food and activity journaling again and Ange and Dr Matt (my nutritionist and ND) will no doubt have suggestions to help with my fatigue and also find ways to rev up my appetite to help fuel me to the finish
That being said I have begun to approach my low fatigue days with more acceptance. A friend, Martha, challenged me to think about rest as a key component of my treatment, just like nutrition, chemo, exercise etc. I really thought about that and am more able to accept that some days I need to sit on the couch and that resting is not about me being lazy or wasting time. Interestingly now that I have adopted that perspective, on days where maybe I am feeling 60%-70% I am better able to get myself motivated to at least try some stuff – like today. Woke up feeling crappy, watched a little Cosby, then found some motivation to do some work for Stampede which provided some energy to get out for a run. The rest of the day just went up from there. I am more accepting of the fact that no matter what I do I can’t always control how I am going to feel and that all I can really control is my ability to react to how I feel today.
My next MRI is scheduled for March 24th. I will get the results on March 30th at my next appointment and round 9 begins on April 1st – Hopefully the pharmacy doesn’t play a joke and give me placebo anti – nausea. I have 120 nights left of chemo to go.
Next update will be up by April 11th.
February 12th, 2010 – Round 2.7 Completed – Making our way to the finish line
Well it’s official – I have done more chemo than I have left to do. Finished my 7th cycle on Monday February 8th. Dose was another 5 mg less because I lost a couple more lbs, which meant I got two red pills and one bright green pill to take – told the pharmacist it was like Christmas. The MRI scans that I did on January 19th came back clear which is good. Blood work was all right, although my Red Blood Cells (RBC)/platelets took a bit of a hit. My ND has reminded me the importance of my B12 supplementation and I am going to start back on Folic Acid and we will see if that helps for next month. RBC really impact your energy levels, so I was not surprised to see the low results, considering when they took the blood I was almost falling asleep. I have been noticing that I am more fatigued lately so I will add a little more red meat and be more conscientious of the supplementation. I will continue to monitor my Energy levels and see what happens.
This round of chemo had a little more “excitement”. I am not one who likes routine so even though things have been moving along well, I thought maybe we could do some more refining. At my last appointment I asked the doctor whether we could lower my dose of anti-nausea to help alleviate some of my constipation issues. We discussed how I was feeling and she recommended that I try taking the lower dose anti nausea I took with my lower dose chemo during radiation – it’s called Prochlorazine – rather than taking the higher dose Sofran. The Prochlorazine I only have to take as needed. She said it works for some people.
So Thursday night, I took my chemo pills with no anti-nausea and went to sleep. Friday morning around 1:30 am I woke up feeling not so good. So I took a Prochlorazine and then started the kettle to steep some raw ginger which typically settles my stomach. I had barely poured the water when I was running to the bathroom. I was in the bathroom every 10 – 15 minutes or so for the next 4.5 hours. To make matters worse, we had friends up visiting and we had decided to go out for dinner that evening before chemo. We chose Indian Food. As I lay on the floor at about 3:30 am I started thinking about what I learned from this experience
- If it ain’t broke don’t fix it – meaning I was doing fine, no need to refine
- When given the choice between constipation and nausea/vomiting, I choose constipation hands down.
- If going to play with your anti nausea, do not choose Indian Food as your last meal
I went back to the Sofran on Friday night with much better results. I ended up cutting the Sofran in half to reduce my dose on Saturday – Monday, which also seemed to work well and there was no more vomiting. My constipation was not nearly as bad as it has been in previous cycles. I had started a new homeopath that helps relieve constipation as a secondary benefit and did increase my fibre leading up to chemo which also helped. Additionally a friend, Martha, sent me some tips from a friend who had gone through something similar who recommended a cup of coffee first thing in the morning and adding some fat to your diet which I also tried.
Interestingly my ND had seen some research that looked at the effects of spiking insulin levels in rats on the effectiveness of chemo. The rats that had elevated insulin and chemo all lived, whereas those rats that just had chemo died. My ND indicated that there are some ND in Canada doing insulin injections with cancer patients, however he felt the research was too new and that injections were too risky for him to do them yet, however he is recommending to his patients on chemo that they have a Coke or cookie as close to their chemo as possible. I laughed, and said “Are you really prescribing white sugar.” He smiled and said “Unfortunately I am”. Our friends who were visiting us went to Crave Cupcakes and bought me some mini – cupcakes to help improve the effectiveness of my chemo.
This update is a little late, as the last 3 days after chemo have still been tough. Very strong nausea and a little vomiting. Even though I was done chemo I still took another dose of Sofran because the Prochlorazine wasn’t working at all. However I am not sure if this fatigue and nausea was residual from the chemo or if it was something I did accidentally, namely ate a couple of moldy muffins. I had made some muffins the week earlier and on Tuesday was feeling particularly tired. In the afternoon I realized I hadn’t eaten much and wasn’t feeling up to cooking, so I grabbed a couple muffins. Ate them in bed, went to sleep. A few hours later Jared came home, went for a muffin and went Ewwwww. I asked what was up, he told me the muffins were moldy. I said, great I just ate two of them. So the nausea/vomiting and fatigue the last couple days might be more from that poor eating choice not the chemo. I know the next time that those muffins need to be kept in the fridge.
So a little more activity, albeit activity that I probably could and should have avoided. Live and learn. Next appointment is March 2nd and next round of chemo scheduled to start on March 4th. No MRIs scheduled for this month.
January 14th, 2010 – Round 2.6 Finished – We have hit the turnaround mark
I have completed 6 months of the higher dose chemo and things are pretty routine with my treatment. Blood work once again improved in terms of my White Blood Counts and everything else my doctors told me “is perfect” whatever that means. I haven’t had a chance to take the results to Dr Matt (my ND) but I expect that there won’t be anything new we will look at. My dose went down a little as I continue to lose some weight to 370 mg – so I don’t take a blue pill anymore. But outside of that, really there is no change since last month.
In terms of side effects, fatigue continues during the chemo. I keep trying to fight through it and inevitably that makes it worse. The Tuesday-Thursday right after I finish seem to be the worse as my body tries to re-regulate it’s systems. Constipation continued to be an issue and it affects my appetite, which affects my energy level. Now that I am pretty comfortable with the routine, I just need to readjust my expectations especially for the Monday – Thursday of the chemo cycle. I will work on that in February.
Big goals for 2010 is to try and get into a more consistent routine of exercise, nutrition and balancing other activities like writing for the website and volunteering. Of course that routine got all out of whack this week thus prompting me to change my expectation for February. I have started volunteering again back with Stampede and working on some projects with the Alberta Cancer Foundation. As well I have a few speaking opportunities coming forward that I am anxiously looking forward to. All the involvements are definitely keeping me busy but is also keeping me flexible to adjust should my energy levels dictate I need a break.
I go for another MRI scan on January 19th – that will make 6 MRIs since May 2009 – I am definitely getting my monies worth out the Health Care System. Good thing I am not claustrophobic.
My next round of chemo begins February 4th 2010, and at my appointment on the 4th I will get the results of my scan. I expect nothing but continued positive results.
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