The Fanny Pack

Do you remember the hip belts that were popular in the 80’s?  Also known as waist wallets, belly bags and, my favourite, the fanny pack. They made a comeback in the 90’s and again in the last decade.  I can admit that I briefly owned one… My fashion sense has never been what one would call trendsetting but in my defense I must say that those “oh-so-stylish” fanny packs were great for holding stuff while rollerblading.
Why am I reminiscing about a fashion trend that probably should have been forgotten?
Well, I’m a new member to “The Fanny Pack”.  It really is a group. Honest! However, I hope none of you have to join and I mean that with best intentions, not selfishness. The “Fanny Pack” I’m referring to is for people who take the breast cancer treatment called Faslodex. There is an online forum for the The Fanny Pack here.

Here’s the lead up to me joining this group (although I’m not actually registered in the forum).

On September 10th I had my CIS-Gem chemo treatment; day 1 of cycle 11.  Surprise, surprise, my neutrophils were at 0.8.  Dr.Dent wanted to cancel but I told the nurse to remind my doctor that we had gone ahead at 0.8 before as long as I took my Neupogen… So Dr.Dent agreed (This is why it is important to know the what/when/why of your treatment).  I was scheduled for the Day 8 chemo on September 17th and was scheduled to meet with my oncologist on the 15th.   All my neutrophil troubles, the ups and downs and unpredictability, led Dr.Dent to suggest that it was finally time to take a break from the hard-core chemo.  Treatment was cancelled for the 17th.  J and I had done our research regarding my options so when Dr.Dent suggested Faslodex I was able to agree on the spot that I would switch. That’s not to say Faslodex is risk free nor a piece of cake (I wish!).  It is considered effective though for women who are post-menopausal and who have tried other hormone therapies.  Dr.Dent scheduled my first Faslodex for Sept.23.  I mentioned that I had done research…well, that sometimes leads to knowing more than is helpful. In the case of the Fanny Pack, they quite often mention the pain of receiving injections, how they deal with side effects (mainly pain) and wishing each other luck.  So of course as the 23rd approached I was quite anxious.
In the end (pun intended), it wasn’t bad at all!  I mean, it’s not something I want to do everyday but honestly, it was bearable.  First of all, I didn’t have to bare my butt.  Although Faslodex info sheets and the forums both talk about receiving the injections to your butt muscle, it is more the back of the hip (the gluteus medius muscle) so you just have to lower your pants a little.  Nothing like your worst-case plumber butt.  My jeans could still be held up by loosening off my belt a couple notches.  For anyone reading this who is going for the injections, I recommend not looking at the needles.  They do look big, and thus painful. For me, it felt about the same as the poke for having blood taken.  I had two nurses administer the injections.  Because Faslodex is given in two shots, one to each side, the nurses at my hospital have taken to giving the shots at the same time.  This minimizes the dreaded second needle.  I leaned against a table to relax my muscles as much as possible; the nurses count to 3, poke the needle in, then check with me that I’m ok.  Then they start depressing the syringe over 30 to 40 seconds.  That is a difficult sensation to describe.  Not painful, exactly; Press your fingertip into the big muscle on your leg with decent pressure…  Then imagine not feeling your skin, only the pressure within.  And on the back of your hip instead of your leg.  It’s odd.  Uncomfortable but not enough to say it hurt.
I am still on blood thinners so the nurses were told to apply pressure afterwards.  Well, I’m not going to have them stand there holding ice packs to my butt for 20minutes so we enlisted the help of the invisible man instead:

An innovative approach to ice packs

Apparently there weren’t any regular ice packs so my nurse improvised with some gloves.  It really brought some levity to the otherwise worrisome experience.  I highly recommend this approach.  First of all, I think I brought some humour to the clinic as I was walking around.  I’m sure the other patients at clinic were wondering just what on earth those gloves were for; secondly, I had zero swelling or bruising; and third, maybe best of all, almost zero pain.  Mostly my hip/butt muscles felt as though I had gone for a good long rollerblade.
There, now you’re all caught up on my previous few weeks, medically.

Around home, I’m still chugging away at the back yard.  It’s hard work but I enjoy playing in the dirt.  I always have, so it’s an enjoyable kind of work.

More garden digging to install edging and pavers.

My paintings of Algonquin are nearly done.  When I began I had hoped to finish by September 24th, J’s birthday; but I didn’t purposely make that a goal. There is a good chance I will be finished all three canvases by the end of the day tomorrow.  The fact that I have progressed this far in a month is thanks to 3 people. First, J, for reading and then recomending a book. Second, the author of the book for writing it, and third, me, for actually painting.  The author suggests following a system rather than setting a goal.  If I set the goal of finishing by a certain date, and then am unable to meet that goal, I have failed and will feel bad about it.  Alternatively, I can use the system of painting everyday, even for 5 minutes, and will make steady progress. Over the course of the month I have painted nearly everyday.  I think I missed 3 or 4.  Although I might finish by the end of the month,mainly I feel good because I have made a habit of painting; a sure-fire way to succeed.  This approach can be applied to all sorts of things: losing weight, writing a book, gardening.  For example, don’t make losing 10 lbs a goal.  Make a system, or habit, of exercising and eating well and the weight will take care of itself. If nothing else youll feel better.  For my gardening, I don’t actually know what my goal is… I just go out on a regular basis to dig, move plants, pull weeds, etc.  Somewhere along the way the yard turns in to something decent to look at.

J and I are off to his family’s cottage this weekend for a couple weeks.  We’ll need to do a bit of cleaning while we’re there but it’s worth the time to make the place comfortable because it has a great view over the lake.  Now that I’m out of chemo, for now, and not feeling so drained we can easily enjoy some vacation.  I will have to come back to town for another Faslodex clinic (October 7th) and a meeting with Dr.Dent (October 13th) though.  Even with those appointments and some cottage TLC, our vacation promises to be an exciting time.  I’ve been practically bursting to share some news but was waiting for confirmation before doing so…

I’m pleased to introduce our new pack member, “Daphne”, a golden retriever puppy!  We pick her up this weekend!!

The photo from the breeder, confirming that we have a puppy!

Once we decided what kind of dog we wanted, J found a breeder in Rimouski, Quebec, who focuses on the character of the breed rather than creating the perfect show dog.  Not to say his dogs don’t look good … Daphne is incredibly cute. This breeder’s dogs have less heavy “feathering” than some goldens and he has bred them to be more reddish than the more common gold to white.  The breeder also focuses on creating a working dog, one who excels at retrieving and cooperating with their owner.  He is registered with the CKC so the dogs meet the breed standards but they look more natural to me.  Anyway, our girl Daphne was born on July 27th and will be 10weeks when we pick her up.  Fortunately we only have to drive to Cornwall rather than Rimouski. The breeder has some dogs flying from Toronto to their new homes so as he travels from Rimouski to Toronto, he will pass through Cornwall.  That is about 6 hours closer than Rimouski and saves us driving so far.  J and I have been discussing names for weeks.  I stumbled across the name Daphne on a baby-name website and suggested it to J.  Soon after, J found out that “Daphne” is a character from Greek mythology, namely a nymph who loves water; appropriate for a retriever. Daphne is also the character from Scooby-doo who has red hair.  Both of these are coincidences but makes the name fit our new family member.
I had planned on waiting a few more days to tell you about Daphne, when we bring her home… But it’s so exciting that I couldn’t wait.  I hope you want to see more photos because I’m sure I will be posting them regularly with all her puppy cuteness!

As we add a new member to our family “pack”, remember to appreciate the people and pets in your own pack. I’ll leave whether you pat their fanny up to you 🙂

Riding the Waves

A few of you have expressed concern about how I’m doing in the absence of a recent blog post. Thank you! Short answer: I’m still kicking!  Ok, I don’t really “kick”, but I am still here.  If you would like a longer answer and wish to learn more about my health, keep reading.  I will also write about my other non-hospital activities too.  Scroll ahead to the photos if you want to skip over the health stuff.

My previous post was from the 10th of July under the title “Smooth Sailing”.  Well, this last month has demonstrated that my figurative sail boat has some minor holes in it.  I am not sinking but I definitely need a bail bucket in the form of continued Neuopogen injections.  Dr.Dent had suggested reducing my week 1 dose to 4 days, rather than 5, after my treatment on July 16th… I didn’t have a chance to try the lower dose as my neutrophils jumped ship and fell from 20 to 0.8 even with the Neupogen and my usual week off from chemo.  The nurses at clinic were shocked.  They delayed me to July 23rd but my neutros were still at only 0.8. If I was delayed again that would have been 4 weeks since the last treatment. One of my new favourite nurses decided that this was unacceptable and tracked Dr.Dent down to discuss what to do, in person, rather than risk miscommunication over the phone  Dr.Dent agreed that further delay was a bad idea, as my cancer likes to grow when given the chance, so treatment went ahead with neutros at 0.8 and I was told to take Neuopogen again for 6 days.
Treatment day came on July 30th and again the nurses were shocked as my neutros climbed back on-board to 35.1.  They had never seen numbers like mine… I did reach 39 once while in treatment in St.John’s, but this was a first for the staff at the Ottawa clinic.  No issue with receiving chemo with numbers like that (as long as I didn’t have a fever, which I didn’t).  Next treatment day was Aug.13th. I had taken my Neuopogen shots for 6 days, as per Dr.Dent’s instructions, followed by my scheduled week off. Care to make a guess as to what my neutros were?  Were you close with a guess of 1.0?  Not low enough?  Indeed, they had fallen to a mystifying 0.6.  Welcome to the neutrophil rollercoaster!  Delayed again.
Aug.20th, Day 1 of cycle 10 on CIS-Gem… Neutros continue to be stubborn despite another 6 days of the booster and a week off: they only rose to 0.8.  Dr.Dent was called.  I could hear the nurses’ side of the conversation and Dr.Dent was clearly surprised but gave the green light for treatment as long as I take the 6 days of booster again.  So I did.  Day 8 of my cycle arrived on Aug.27th. Where were my neutros going to be?  Every week J, mom and I make guesses as to what the number will be.  J is often the closest.  I guessed 19, mom offered 24.1 but it was J who was closest with a guess of 32.  The actual result:  49!  The nurse was sure I must have an infection, but no.  My temperature and bloodwork is normal, except for the crazy white blood cells.
We met with Dr.Dent on the 24th and the treatment plan continues to be CIS-Gem as long as I’m tolerating it well.  I had a CT scan on Friday (Aug.28th).  If the results show that I have continued tumour reduction, or am stable, Dr.Dent is again suggesting that I’m due for a break.  J thinks I should be given an award for most cycles of CIS-Gem taken, and with basically no side effects.  I’ve just finished cycle 16 since May 2014. That makes for 32 injections of chemo over 15 months.  That is a long time to be on these particular drugs.  The medications I could switch to are Faslodex, which I’ve discuss before, or Xeloda.  I need to read about Xeloda as I know nothing about it except that it’s a daily oral pill.  That would be great… Tired of needles and trips to the clinic!  However, I want to make an informed choice so J and I will do our homework so that I am prepared should the CT scan reveal good news.
I realize that all these paragraphs with numbers and dates and drug names can be confusing.  I don’t apologize for that as I hold to my position that these details may be useful for another cancer patient.  That being said, let’s move on to more fun things.

Tolerating treatment, good news.  Maybe a break from chemo, good news.  Break-through from artists’ block at last, good news!  Very little had been on the go artistically since finishing Canyonlands back in April.  I thought I might paint a horse portrait or a landscape of the Grand Canyon… I wasn’t feeling inspired to follow through.  I was spending a fair bit of time playing with yarn: sorting, winding, labelling… my cats were happy to help.

Hazel inspects the yarn while Fini points to the  entry on my spreadsheet.

I enjoy playing with yarn but at the same time felt I was letting my artistic slide slip.  In mid-July J came up with the brilliant idea of my doing a portrait of an inspiring person and hanging it in my studio.  It probably isn’t hard to guess who I chose to draw.  There is no shortage of interesting artists but, for me, Van Gogh is the epitome of a highly creative person. I also greatly admire his style, adherence to the principles he believed in, and dedication to finding his way in life.  Some may argue that his artistic success is marred by his mental state.  However, I don’t hold it against him.  Everyone has issues if you look deep enough!  To inspire myself, I completed two drawings based on self-portraits of Van Gogh. Hazel took charge of inspecting how I began and was as helpful as ever.

My drawings are below, one in charcoal and one in oil pastel. The paintings I based my drawings on can be found here and here.

 

I’ve also started three canvases of scenes from Algonquin Park based on photos from the trip J and I took in 2012.  Here is a preview of the process to start these paintings: pencil sketches (2×3″ each), little oil pastel colour sketches (also about 2×3″), a colour study in oil paint (8×10″), then full size charcoal drawings (20×24″ each), and finally the beginnings of the oil paintings.  All good fun… Hoping to finish the paintings next month.

My neutrophils have kept me from socializing, somewhat, so I’ve kept my activities home based for the most part.  I do go to visit with my mom at her house about once a week in addition to the chemo appointments she takes me to.  Usually we knit a little and watch an episode of The Amazing Race Canada.  My home activities revolved around gardening when my energy and body felt cooperative.  J and I moved to this house in December.  Springtime revealed a severely overgrown back yard.  Creeping plants had taken over; large hardy Geranium, two forms of Lamium, “outhouse” flowers, and violets.  Pretty in season, definitely, but the yard looked very unkempt.

Two views of the yard before the make-over.

Little by little, over the summer, I weeded and pulled and weeded some more.  I eventually found where the edge of the garden lived once upon a time and unearthed over 120 paving stones buried under the overgrown plants and years of leaf fall.  So, then I set about resetting the stones and reseeding the grass.  By the time all this was done the garden centres had their end of season sales.  I was able to buy at least two dozen new plants for about $50, mostly native too (Rudbeckia, Echinacea, Jacob’s Ladder, Coral Bells, Hardy Geraniums, Daisies, Astilbe).  The garden already had some Tiger Lily, Hosta, Raspberry, “Outhouse” flower, and Ostrich ferns… so it will fill in nicely over the years.  Next up is to give Buster a nicer enclosure.  The plywood works well to keep him from wandering away but I would like something more aesthetic.  In the meantime, he enjoys hiding under the hostas I moved in there and swimming in a makeshift pool (a large, shallow Rubbermaid bin).

The new garden, and slight view into Buster’s enclosure.

To finish this post, I would like to share one final piece of good news referring back to the idea of smooth sailing… J and I celebrated our 10 year wedding anniversary on August 27th!  We had hoped to make a trip to the east coast as we had done for our honeymoon but with my treatment delays, we ended up spending a good part of our anniversary at the cancer clinic.  J is on vacation this coming week so we may make a trip yet if my energy remains good.  Maybe to his family’s cottage or some camping.

Given the right person to share your life travels with, life can throw all sorts of things your way and not only is it enjoyable but you look forward to many more years ahead.  Life is like a river… you go with the flow, find hope in the adventure, paddle through the wavy parts and enjoy the view along the way.

Happy sailing!

Horseshoes

On May 26 I met with Dr.Dent, my oncologist, to discuss the plan for treatment now that a second round of chemo has been completed (Yay!).  I’ve been on CIS-Gem for a year now so she suggests I take a break as that is a long time for the body to cope.   However, I had a CT scan booked for June 10th so Dr.Dent recommended that I do one more cycle of chemo to keep me in treatment until the scan.
When I say that my doctor wants me to “take a break” I don’t mean from treatment entirely, only from the CIS-Gem chemotherapy.  I can’t stop treatment altogether as that has proven to be rather disastrous (ie. 2 months off and the cancer grows… a lot). Now that my tumours seem to be under control again I’ll be happy to switch from chemo to something else.  Even though I’ve had a relatively easy go of chemo, all the trips to the clinic and a lot of worry about my ability to fight infections every cycle has been tiring. I was dealing with concurrent mouth ulcers last month. Nothing major, as they were healing on their own and didn’t need any special mouthwash, but they did make eating salty, spicy, acidic or crunchy foods interesting (meaning occasionally painful – like lemon juice to a paper cut!). Also, the tiniest cut or scrape to my skin turns red and threatens infection so clearly my body is struggling to keep up.
I had so many delays in St.John’s because my neutrophils were often too low (below  the 1.5 threshold set by Dr.McCarthy).  Here in Ottawa, I have been on-schedule because Dr.Dent uses a lower neutrophil threshold (1.0).   May 29th was supposed to be Day 1 of the last cycle… but my body had obviously had enough.  My neutrophils were at their lowest ever (0.6). Not really close enough to even squeak by and close only counts in horseshoes anyway.  I was delayed by a week to June 5.  That day I really did squeak by with my neutrophils coming up to a whopping 0.9.  With Dr.Dent’s approval treatment went ahead but she did prescribe Neupogen for me to start immediately.  If you don’t recall, Neupogen is basically an immune booster. It promotes growth of all those blood cells that keep us healthy. This drug is given by an injection under the skin taken for 5 days after chemo.  Last week I felt like quite the pin cushion as I’m taking Fragmin every day (the blood thinner needle), plus my monthly Xgeva was due (another belly shot) and then the neupogen too (in my upper arm).

Friday was Day 2 of this last cycle and the Neupogen has done it’s job.  My neutrophils came up to very healthy 11.1!  On the other hand, my platelets have fallen a fair bit due to the blood thinner so the nurse needed approval before giving treatment.  All went well and with the help of my daily naps I’m still feeling good.  It could have something to do with regular chocolate treats supplied by J & Mom and the occasional indulgence in french fries too.

Next week, Tuesday, 16th of June, I’ll meet with Dr.Dent again to review the results of the CT scan and hopefully finalize the new treatment plan.  The plan will likely be to take an anti-hormone drug called Faslodex.  Initially, I would receive an intramuscular needle every 2 weeks (Day 1, 14 & 28) and then once a month after that. Faslodex is yet another needle but one that I can’t do myself as I do with Fragmin, Neupogen and Xgeva.  Why can’t I self-administer?  Well, the needle has to go into the butt muscle and that’s just a pain in the arse… pun intended.  To reach behind you, keeping the needle straight and in position while pressing down on the syringe is just plain awkward and potentially painful if not done well.  Also, the muscle has to be relaxed so you can’t risk flexing as you’re trying to reach behind you.  Go ahead, try poking yourself with a pencil and staying relaxed… it’s harder than it sounds.  All around, it’s just easier to have a nurse administer the needle and know it’s done properly.

So there’s all the cancer updates. More enjoyable things on the go:

As usual, J and I are going for walks around town.  Last weekend we went to a Nature Reserve called Mud Lake.  We saw or heard 18 different species of birds, in addition to several that I couldn’t identify, plus squirrels, chipmunks, turtles (snappers and painted), and deer & racoon prints.  Definitely somewhere to return to.  We’ve also been out rollerblading and covered about 14km along the canal.  Today we went to the Arboretum and had a nice mid-morning walk in the sun.  This afternoon called for a nap, followed by some knitting, while J did some yard work.  It’s been a very enjoyable Saturday.
My knitting addiction continues with support from J and encouragement/enabling from my Mom who takes us to yarn shops and keeps me up to date on patterns, projects and most recently, a new on-line source for yarn.  Uh Oh…
I have a new painting developing.  Still in the sketching stage at this point but something to do with a horse charging towards the viewer.  Another painting in mind is something Grand Canyon related.  I acquired some  pieces of hard board, one of them being 3 x 4 feet, so the large size is calling for something big.  Can’t think of anything bigger than the Canyon!

A photo from our trip in 2013, overlooking Skeleton Point. May be the basis of a future painting.

I hope everyone is enjoying their summer, finding people, places and favourite things that make you feel lucky for the goodness we have in our lives.