Just waiting for my muga…

Hello again, I am currently waiting in nuclear medicine at the Cross Cancer Institute for my Muga. I will likely have 2 or 3 more if these to check that the herceptin isn’t affecting my heart. They tell me that my risk is small since I have no heart disease in the family. I am thankful that not much is left to chance.

I can tell you one thing for sure, I will be glad when my doctor, Institute, OT and treatment appointments decrease as I am growing tired of the road. I am also thankful that my car runs good. Being that I live an hour away from one chemo clinic and 2 hours-plus from the institute, I realize how taxing it would be on folks that are even more remote than that. Things are getting better though, I read that new radiation treatment facilities are now located in Lethbridge, Red Deer and Grande Prairie. This is tremendously beneficial. I believe that patients and their families speaking out and giving generously to the cause, has achieved this, and those people deserve a big thank you.

Going back to my treatment, I have also started taking letrozole, an aromitase inhibitor, to reduce the amount of estrogen in my body. I had the choice of tamoxifen or this drug but after discussing with my oncologist, decided on this for the first 2-3 years. At that point I may change to tamoxifen for the next 2-3 years. If I don’t react well to it I would be able to stay on the letrozole. This drug can cause bone loss so I will also start taking a bisphospanate next month, November 7th, give or take a day or two. That will also be in pill form and will help build my bones and will also help prevent any spread of the cancer to the bones. The pill form vs. having an injection every 6 months, reduces the risk of getting a necrosis of the jaw bone. It is a small risk but not something I could accept very well so I will try to put up with managing the pills every day to reduce the risk by about a third. They tell me I can switch to the injection if the pills aren’t working out for me. The pill management has been an arduous task for me as, prior to cancer, I was only taking thyroid medication. Now I am needing to switch my synthroid to just before bed. Both the synthroid and the bisphosphonate need to be taken on an empty stomach so my doctor suggested taking the bisphosphanate in the morning when I first get up. Then I am not supposed to lie down for 30 minutes so that spoils my idea of waking up, taking it and going back to bed…bummer.

I am just coming back to this post Dec. 26th and this is how it is going now. So on the weekdays, I work, so I need to get up anyway so I use the 1/2 hour to go on my treadmill. Also, nothing but water ingested for an hour so no coffee until after my shower. It is a change in routine but a good one with adding the treadmill into it. On weekends I sometimes just prop myself up with pillows, put my head back and nap awhile. It’s a sacrifice that isn’t very difficult really. So far I seem to be getting away with only minor side effects. I have a bit more severe and frequent hot flashes, increased foot, ankle and knee pain, until I get limbered up. Also, mild constipation but that can be dealt with by using restoralax. That is the one I am using but I am sure their are others that work too. That is about all I can write to catch my readers up at the moment. I rather like getting back to normal life or close enough. My family and I can do without any more of this kind of excitement, for a long, long time.

Happy Holidays everyone!

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As I complete chemo…

It is mid August, a time that I had been looking so forward to from the day I started my chemo at the end of April 2018. The 14th was to be my last but my platelet count was too low so it had to be postponed to Aug 22nd. I sure hope I am back up enough to handle that date! I am not normally one to call the doctor when I am feeling pretty good but decided not to risk a ‘scolding’ for not advising her about my feet retaining water and sore/tired legs. I joke about being scolded because both my doctors at CCI have been awesome. The low platelets made the decision for us but the other side effects had indicated that I was quite toxic and could use the extra week to recover a bit. I have been trying my foot soak with epsom salts in the evening. Not sure if it is helping but perhaps the level of stiffness is less.

I am enjoying food this week and plan a nice meal for Sunday, while I have my taste buds. It might be even longer than 2 weeks without them this time. It being the final treatment makes it easier…somewhat. I have a book that I borrowed from the library, on a tip from my daughter, called “The Cancer-fighting Kitchen”. This book gives tips on how to manage taste challenges while taking chemo treatments. I couldn’t get much satisfaction from those tips but they must be useful for others. There are some good and healthy recipes though. I tried the ‘Anytime Bars’ as a snack food, which I often need at work or on the road. When your meals are small, you need snacks and they may as well be healthy ones. Also, the Maple-glazed Walnuts are good or would have been but I learned that you really have to watch to not over-bake. It is ok to under-bake these as you don’t want that scorched taste at all. I am extra disenchanted with any burnt taste as well as smoked food. I found this when my husband used his smoker.

I am excited to get my life back. I feel confident, for the most part, that this will be the one and only time that I have to go through this. There will always be a tiny element of doubt and fear because it is a disease that can recurr but I choose to think the cup is 95% full of ‘cured’!

I hadn’t posted this draft, neglecting my blog, as I wrapped up the chemo…YAY! It is now Sept.7th and I handled the last one (on Aug.22nd) very well again with only the usual side effects, loss of taste and the swelling in my feet. However, that swelling totally disappeared when the weather turned cool. I guess the change of season will do some good that way. It is my favourite time of year as well, so I am celebrating everything at the moment.

This doesn’t mean that I am finished with treatment, oh no no. Now we are on to the endocrine therapy (either tomoxifen or an aromitase inhibitor) to starve the cancer cells, if any remain or start up again, of estrogen. Because my cancer was ER positive this is a highly recommended course of action. Also I will have 11 more cycles of only the herceptin for the HER-2 positive aspect to my cancer. They call it triple positive, so ‘man oh man’ am I positive! I have maximum positivity. Who knew??

The herceptin does not cause the harsh side effects of the docetaxel or carboplatin. I have been receiving this all along, with the ‘bad’ chemo, so I should be accustomed to it’s affects already. I think I am going with the aromitase inhibitor, letrozole, for the next 2-3 years, then possibly tomoxifen. The AI will be supplemented with a dose of a biphosphanate, zoledronic acid (Zometa) to support the bone. It helps build up the bones and since I have already lost significant bone density just due to menopause, this sounds good to me. This treatment also helps prevent cancer from spreading to the bones. So it is a win-win. If I tolerate it well I may be on it for the full 5 years. That will be assessed later on.

So my dear blog readers, I want to thank you for sharing in my journey thus far. I hope that you gain some tidbit that gives comfort or knowledge that will help you on your journey.

Love each day.

Denise

So Much Support!

Me again, I am glad you’re back! I promised to talk about the miriad of programs that exist in this great Province of Alberta, that aim to help people that have been diagnosed with cancer.

For me, the information started flowing the day of my diagnosis at my family doctor’s office. The nurse, Reena, who I have known since she was a toddler, printed some material from a ‘site’, called uptodate.com specifically looking at the adjuvant therapy for HER2 positive information, and printed several pages for me. Also, at my request, she printed all of my test results going back to my first blood work. I was just a new patient of a couple of months and feel rather lucky that I chose to change doctors, to be closer to home was my thinking, but it lead to an earlier mammogram, which may have saved my life. I only just remembered that I said I would email Reena to let her know how I was doing as following that fateful day, I haven’t been back to their clinic. I will return after I am no longer receiving chemo and I am ‘handed back’ to my family doctor.

My care was taken over by the CBCP(Comprehensive Breast Care Program). This program does so much to guide a patient through all the steps of treatment whether it be biopsies, referral for surgery, chemotherapy and so on. I presume the CBCP also referred me to the Patient Navigator Program. They are found at many hospitals that deal with cancer therapy. It is important to note that I didn’t need to ask for this help at all. They found me, likely referred by my family doctor.

With everything still seeming quite over-whelming, I doubt I would have sought out help and support for myself. I think I would feel far more vulnerable without those supports in place, that are anchoring me.

“We interrupt this program for a word from our sponsor”…not really, but I couldn’t resist that phrase to interject with something that is off topic. Yesterday, July 5th/18, I went to an occupational therapist for help with my surgery site. I will talk more about this and the reason for it, in another post. This trip gave me pause when it comes to the prevalence of breast cancer. First, after a few minutes chatting, the OT told me that she was in treatment as well. I knew she had a modified work schedule due to health problems but never guessed that it would be the same disease. I feel very sorry about that but it was an opportunity to share our individual journeys for the same disease. Following my session I went to a drugstore and while at the checkout, which was not terribly busy, I was inspired to tell the lady in front of me that she had awesome hair, just lovely blonde/gray curls. I said that if my hair came back curly I hoped it would look like hers. That started the conversation…she said her sister had been treated for breast cancer also and talked about her hair regrowth and then the clerk said that she also had BC and her hair came in curly but as it grew longer had straightened (she hasn’t cut it since and it was 10 years ago). Hence, my need to blog about this and how it is shocking to me. We need to find out why the rate of this cancer is so high.

Back to topic with some websites. The main site that will take you to other links more specific to your needs is simply cancer.ca, so if you don’t know where to start, that is it. If you need to connect and chat with other cancer patients do try cancerconnection.ca. I visited a ‘sanctuary’, if you will, that is only a couple of years old called Wellspring Edmonton, wellspringedmonton.ca. It is a gathering place where you can take part is a wide variety of activities, discover a new hobby, learn useful strategies in dealing with cancer and much more. This place is fantastic! It is largely ran by volunteers, that have been touched by cancer plus trained professionals. It is funded by donations and grants and all of their programs are free for people under-going or have under-went cancer treatment.

Then there is Sorrentino’s Compassion House, compassionhouse.org, What a jewel this is! A place to stay while receiving treatment, if you live more than 50 kms away from the city, with only a nominal fee. I plan to stay there with my gal pal for 2 nights during my next cycle, which I was scheduled for at the ‘Cross’, this time, as it is time for my heart test again. This is to make sure that the herceptin is not affecting how my heart is pumping, as it has been known to do.

Speaking of the ‘herceptin’, the miracle drug for women with an HER2+ diagnosis, one of my chemo nurses told me of a book, that I plan to read at some point, called “The Emporer of All Malidies”, written by the doctor who made the discovery of this very effective treatment. All I can say is thank you to him for his fortitude and passion as without it, a lot of women like me would be facing a much less optimistic outcome.

Another resource is, and I will stop soon so you will go and discover and not have to spend your life here in my blog, is Alberta Aids to Daily Living. This resource is not dedicated solely to cancer but offers specialized devices and equipment for many health needs, temporary or not. They have a breast prosthesis program which is offered through various venders. I have not looked into it yet but may if I feel I need something more than a ‘fluffy’ or my newest addition, the awesome ‘knitted knocker’, made for me with loving hands and really is the most comfy falsie that I have.

I will now list off some of my more frequently used publications, that are readily available at the health facilities you will visit;

Breast Cancer and You

Coping When You Have Cancer

Understanding Treatment for Breast Cancer

Your Guide to the Cross Cancer Institute

Living With Cancer

Living Your Best During Systemic Treatment

I hope that this blog post has been helpful. It helps me to feel like I might be able to help my friends or friends of friends, and so on, through their journey. I feel we need to share our stories, even though you may have your own need for privacy, which I get, as I felt it too in the beginning. It is good to talk and receive support from people who wouldn’t be in your nucleous of [family plus a few others]. You get used to people asking you how you are doing and even appreciate it. It is no longer an “I hear you are not well” and “is it true?”, but a “wow, you look great”(even if you don’t feel all that great) it is good to hear and great to know that they know and act their natural way under the circumstances. Once I knew of one or two people whom I hadn’t personally told, that knew and mentioned it, I felt I wanted to get my story out on my terms with accurate information, and not leave those people wondering or making their own assumptions. There are so many different diagnoses with breast cancer with very different prognoses. Thankfully, the majority can be cured or at least managed for many years. Your life is no longer over. On that note, don’t forget about donating as the need for the many services that are there for us, need constant support. Research is on-going too, which is why I am able to enjoy a normal life during treatment. Cancer is not over and until it is, we need to keep up the fight. Enjoy your life and health today and always!

Denise

Specifics on Diagnosis & Treatment

branches daylight environment flowers
Photo by Pixabay on Pexels.com

Hello again, it is June 8, 2018, the day following my 3rd chemo treatment. I was fortunate to have 2 of my best girlfriends drive me to the hospital, keep me company, and run out for delicious take-out lunch, and drive me back to one of their houses where I left my car. Still acknowledging the possibility that I might not feel well after treatment. But again, I was feeling fine, alert and energetic, so I ran a few errands and started off on the hour drive home at roughly 5 P.M.

I am thinking that now is a good time to tell you about my specific diagnosis. I had an Invasive Ductal Carcinoma, grade 3, stage 2. Initially, it was found to be Estrogen Receptor positive but HER2neu Equivocal SISH positive, but after the pathology of my mastectomy, the tumour was found to be HER2 Equivocal (2+). This pathology also revealed that the 2 sentinal nodes tested were negative and 1 intramammary lymph node was also negative, 1 other lymph was negative, and the margins of the excision were also negative.

I believe it was all the ‘negatives’ that made radiation treatment uneccessary, which I was relieved about.

Next, I want to inform you about my chemotherapy ‘cocktail’, or if you prefer to call it a regimine or protocol. Mine consists of herceptin (17 cycles), docetaxel (6 cycles), and carboplatin (6 cycles). I also take the following in pill form; dexamethasone (an anti-histamine and steroid), ondansetron (anti-nauseant), metoclopramide (anti-nauseant to be taken as needed) I have not needed to take any of the meto. The dexamethasone is taken the day before, the day of and the day after my chemo treatment. The ondansetron is taken twice on the day of chemo, an hour before treatment and at bed time. To start with, keeping on top of the ‘pill taking’ was fairly taxing, when you are not accustomed to taking medications at just the right time, avoiding what you need to avoid, with food or not, and so on. My cycles are every 21 days. Following all of this, I am told that I will start on Tamoxifin for 5 years, or more. I recently spoke to a woman who just had her 5 year check up following her breast cancer, and was prescribed another 5 years on tamoxifin, just because it is such an amazing drug, is how she put it. Happily, she was clear of cancer. One last one, I almost forgot, is the ciprofloxacin, which is an anti-biotic to protect me from infections or viruses during the period when my white cells will be depleted from the chemo.

On my next post I want to talk about all the wonderful programs, facilities, offering a variety of supports for cancer patients and their families. I hope you will come back for a visit.

My Cancer Experience

It has taken almost 4 months since my diagnosis of breast cancer, to come up with the idea of starting a blog. I am not sure, at this point, if I will still want to keep up with it further into my chemo. If I start to feel sick I may want to stop so for now I will just write about my experience thus far and ask for forgiveness if I take some pauses along the way. I have never had a blog before so I might make mistakes but hopefully not one that would make anyone feel worse about their own situation. So here we go!
I have now had my 2nd chemo treatment and as I write on the Saturday night of the May long weekend, I have had a productive day, having mowed part of the lawn, raked up cones, watered and pulled dead stuff out of flower beds. Not too bad, I would say, especially when I realized on Friday that I made an error when taking my anti-nauseant medication, taking only ½ of what I was supposed to take. I did take the full last dose Friday night after talking to the nurse about my error. She thought I should do that.
It is now Monday of the long weekend. I have not had any unpleasant side effects. Although, yesterday and today I am experiencing a different tasting ability. My food tastes a bit strange but it doesn’t stop me from eating. It does seem to make me want to try various treats because I am not getting the satisfaction that I would normally get from a potato chip or some nuts or cheese & crackers. It could be a good weight loss strategy though, this is not the time I should be trying to lose weight anyway. The other nuisance is the hair loss, trying to keep it out of the drains, off clothes, etc. I am embracing the head scarves now, trying some different tying methods. I will be getting my head shaved Tuesday after work as well as having my wig styled. Although I was given some wigs to try, I am going with a loaner from the- Cross Cancer Institute-wig services. It is close to my own hair style and colour and they allow styling, cutting that is, to better suit my needs. I could also get the others styled but will wait and see if I want or need another.
I am hoping that I won’t need to shave my legs this summer! A possible silver lining there.
I feel so good that today I hope to get my plants re-potted. My hubby should get home early from work and will finish mowing the lawn. Then it will really become spring around here. Side note, the mosquitoes already know! They are horrendous right now!

Bye for now.