Lily has a bad day

This blog is written by My Michelle.

I think most of you who follow Richard's blog, know that we have a new member in our family, our 1 year old cocker spaniel, Lily.  She is the light of our lives and brings us much joy and laughter, but she also definitely has a bit of the "dickens" in her and at times, thinks she rules the house.  She has wiggled her way into our hearts, and in turn, she has a special spot for each one of us and treats us each differently.  Our son Josh was the one to carry her home in his arms from the breeder, and she always has a special attachment to him.  He's kind of like the big brother who lets her get away with everything and brings her treats.  She anxiously waits for him to return home from work each day.  Jon she treats like a playmate - he's the one who plays "ball and fetch" and she always brings him her toys to play "rough and tough" with.  Our daughter Sophie is the calm one in the household, and Lily loves to lay on her bed and watch out the window while Sophie is busy doing her Opal and Fern Design work.  Richard - well she loves to nap with him - if he's laying down, you can often find her curled up in a ball by his legs and with her head on his foot as she watches out for him.  Me, well I'm not quite sure - sometimes I think she thinks she's the mom and the boss - we are working on that, Lol.

Lately, as Richard's health has declined, we've had numerous people in our home - nurses twice a day, medical deliveries, hospital bed and equipment deliveries - well the door bell always seems to be "a-ringing" and the "strangers" in our home has increased quite a bit.  Lily puts up quite an objection to all of these people coming in and out, and what was once a quiet dog has become very vocal and quite a barker.  We are trying different things to try and reassure her and reward her for when she is quiet, but her desire to warn us and to protect us is quite strong and in her genes.

As Richard's health declines, the stress level in our home has also gone up quite a bit.  Rare is the time when I can just sit and relax and hold Lily on my knee.  She misses these times and rightfully so - what is a dog to do?  She is also very empathetic and sensitive to our emotions, and so as we are a little on edge, we definitely see this in our dog as well.

We had a bit of a wake up call yesterday.  Our usual groomer was ill and unable to take on her clients and we needed to find a temporary groomer for a month or two.  We had an awesome referral, they had an opening and away we went.  It was a very busy day for us that day, and Lily was kind of shuttled back and forth and then dropped off at this new groomer.  I had taken the 1 hr to take a bit of a break for myself - Richard had Sophie and Jon looking after him, the nurse was due and I thought I had a small window for a little self care.  Well things did not go so smoothly as planned.  My phone didn't stop buzzing - Richard's IV was acting up, the nurse had been and left and the IV was still buzzing and Lily's groomer was leaving me messages.  Needless to say - Richard needed me at home to fix the IV and pump, Lily needed me to bring her home, and the groomer was not complimentary at all.  Lily had a bad day.

I was quite hurt at the time, that the groomer had been so harsh with Lily and that Lily had this bad experience with this new groomer.  She has always had great reviews and done well with her regular groomer. We had taken great care to get her used to grooming and being clipped from the time she was a small puppy.  What was going on?  Then, as I reflected, I realized she was acting out because our life was kind of spiralling a bit out of control.  Too many new people, too many changes in routine, too many rapid transitions and too much stress.  Nothing is more wonderful than when life is settled, and Lily is happy and content, behaving and by our side.  We need to get that back.  We need to get all of our emotions under control and actively work to get some serenity back in our lives, especially now.

They say you can learn alot from your dog, and well I certainly have.  We need to live in the moment, we need to enjoy treats now and again with no guilt, nap when you are tired, go for walks every day, slow down, love unconditionally, and lean on those you love.

We love you Lily, thank you for being there for each of us.  It's a heavy load you bear. 

Love Michelle (PS I am the boss by the way) XOX

A Big Grey Cloud.... Here Comes the Sun!

This week's blog is transcribed by Joshua (thanks Joshua!) and Richard.

It is so nice to have your many visits to look forward to, to lift my spirits and change my attitude for the day. Instead of falling deeper into the doldrums  I am able to pull myself up and see the positivity around me.  Truly, connecting with you, helps me a great deal.  I love to talk to you about so many things, my health yes, but also the many great memories we share together in teaching, administration, and life here in Newmarket.

This week has been quite manageable for me health wise.  The routines are now setting in and we are feeling a better flow of the day. I have nursing visits twice a day, the pain pump is working well, and I seem to be tolerating the IV fluids and the steroids.  Although there are still ups and downs, being at home will always be better than being in the hospital.  My hope is that we will continue on this positive trend and I will be able to do a few more things.  Believe it or not, I am looking forward to running errands and getting out of the house for a change in scenery.  If things continue to stabilize, something I am really looking forward to is going to Kingston to visit some long time friends and family.  I know this might be a long shot, but we are talking about how we can make this happen.

In the meantime, we are taking it one day at a time and facing the obstacles as they come and hoping for many more days. 

I haven't felt much like listening to music up until now, but have recently been listening to some old Beatles tunes.  This one by the George Harrison keeps running around in my head and really seems to resonate with me:

"Here comes the sun do, do, do, do

Here comes the sun,  

And I say - it's all right" - The Beatles/George Harrison

Sometimes you just have to gather your own sunshine!

Thank you for reading and participating in my journey,

Back to you Michelle! Next week it's your turn.

Richard

Targeting Pain Relief

This week's blog is co-written by Michelle and Richard. 

It's been a longer week than normal for me.  I've spent most of the time sleeping in my bed upstairs and struggling to manage my various pains - in my back, in my neck, all over really.  Once it starts to gain hold, it's really hard to get back on top of it.  We have tried different drugs and treatments, and finally we think we have a solution in place to solve the pain issue.  One thing about pain meds is that they also make you sleepy, and also create other side effects and problems as outlined in my previous blog post, Pain in the @#$% !

This week has also saw progress in other ways - I now have a hospital bed on the main floor to make things a little easier for me, as well as a shower bench, a walker and a wheelchair (just in case I will need it).  I have a nurse coming in daily and she provides much needed care for me and support for Michelle.  She has been with me during these days of sorting out my pain and other symptoms and so it is very helpful to have this continuity of care.

In addition, my care has been streamlined.  My pain meds are now managed with a pain pump and my meds are cut down to just the essential things to give me comfort and care.  This has been very helpful as I've had a bit of nausea, so now we are by-passing that and the drugs get right where they need to be and when.  This takes a big burden off of us as we had a large number of pills and different timing to take them, so this is all much easier now.  Less running up and down the stairs for Michelle.  We also have our Dr. come to our home as well as other essential services, again making things easier and able to stay Home Sweet Home.

Though things have declined for me this week healthwise, there continues to be hope as other things get more manageable - such as my pain.  I had to cancel a number of visits this week with family and friends which was very hard for me to do.  Hopefully we can get these re booked over the coming weeks.

I'd also like to thank all of you who are dropping off goodies for our family - I've had a number of butter tart deliveries - how did you all know they are my favourite!   We really appreciate all of your efforts - life is so busy for all and that you took this time to bring us some sweetness is overwhelming.  

Sugar seems to give pain relief too!  As Mary Poppins would say " just a spoonful of sugar, helps the medicine go down" and it really does!

Richard & Michelle

Home is where the heart is......

This week's blog is co-written by Michelle and myself, a new way to get the blog done on time and with some sort of coherence!   These pain medications sure do play tricks on the mind and I do find it hard to type and write a sentence.

I am fully switched over to palliative care now. Luckily they have a great unit and team of doctors to care for me and us right here in Newmarket. Which is such a blessing, being so close to home, and actually, in our home. So what exactly is palliative care? Up until this point, I didn't really understand it myself. 

Basically, palliative care starts when all other treatments and options have been unsuccessful and the focus of care is on comfort and maintaining the best quality of life for as long as you can.  It is a time for thinking and preparing for difficult decisions and moments, and for having the supports as they are needed in place, whether that is for personal care, nutrition, pain management and support for our family.  It takes great people to be able to work in this area - I really take my hat off to them - it can't be easy.  I also never realized how many people, roles and agencies were involved in the care of someone at home.  It is just amazing and that this seems to all come together.  Again, my thank you for the team at Southlake for their efforts on my behalf.

I am so pleased to still be at home and managed at home.  We are still sorting out the right balance of pain medication to help with my back pain, but also keep me well enough to be up and able to connect with my family.  Right now, I sleep a lot - I mean a lot and in sleep I have less pain, but I do not want to sleep my life away.  I do not have much of an appetite, but I do find that the sweets do go down pretty well!  Michelle has kept me in "butter tarts" and for that I am thankful LOL.

We have been working to get some visits in with family and friends as I can, and this has been so good for my morale.  For some reason I've lost my taste for coffee which is odd, but I love to get together with others and let them have coffee while we visit.

As we head into this long weekend, the last one of summer, treasure your family,  spend time together, and I know that you too will appreciate "there is no place like home".  

Home is where the heart is........

Richard & Michelle

This week, it's your turn!

This weeks blog comes courtesy of My Michelle

This week, it’s your turn to write the blog Michelle!

We are all so amazed that Richard has posted over 100 blogs and continues to share his personal cancer journey and its impact on our lives, over the past two years without missing a single week.  There may even have been a time or two, when there were two entries in a week!  Unbelievable!  Sometimes when we set ourselves a goal, it is human nature to pursue it with all “pistons firing” for the first attempts or two, but then with time, we tend to wane and ease off.  Not Richard.  He has approached the blog and communication with you, with the same grit, determination and commitment that he approaches his life, and this recent chapter – his battle with cancer.  But on occasion, he ropes me in and asks me to do a guest blog.  This week he was sure to remind me (many times I might add) that “this week, it’s your turn”.

I find this week however, that I don’t have a lot to say, feel “yes”, but say “no”.  There have been times this week when I have been overwhelmed, I have been exhausted, I have been sad, and yes, I must admit – I have been angry that this is what life has dealt us and at the prime of our lives.  The rational side of me knows that cancer does touch so many families and their loved ones, why should we spared?  

This week, I’ve also been touched by the generosity of others, your responsiveness, willingness to help, and reaching out to Richard to share a smile or two.  I know it is very difficult and hard to know what to say or do.  At times I don’t know what to do myself.  But I wanted to say that just by reaching out and letting us know you are thinking of us, is very helpful.  Keeping in touch with him is invaluable in terms of keeping his spirits up.  We are trying to get in some visits now and again over the coming days and weeks with family, friends and colleagues as Richard feels up to it which is usually every other day for about a hour.

This week, we also felt pride.  Last Friday, July 16th our son Jonathan completed his “century ride” in honour of his dad and raising money to support the “Ride to Conquer Cancer”.  He achieved 100 miles cycling in one day.  Richard, despite being just discharged from hospital, was able to make it to one of the rest stops we had arranged and show his love and support for Jon and his efforts. A cheerleading squad like no other.  Your support continued to roll in – and at the last 18 kms to go, an additional $500 in donations came in – giving Jon the impetus he needed to finish it off.  It was close to 2 am when he rolled in, finishing the ride.

This week (and everyday), I am amazed at our wonderful children.  This week and every week, our son Josh is so caring and concerned for his dad, stopping on his way home from work, and bringing home “treats” or anything he thinks might tempt Richard to eat and take in some more calories.  He is a big supporter of the Timmie’s Run for cinnamon buns with extra frosting, or a mango hurricane from Booster Juice, two things that always seem to tempt Richard (although not the most nutritious – but who cares!).  Sophie remains laser focused on her Opal and Fern business and her graduate school preparations, consulting with Richard along the way on the direction of her business and her study plans.  She is home with us 24/7 electing to “work from home” and spend the summer with us and Richard, giving and receiving the gift of time together.

This week has gone by way too fast, as they all do.  I know I said I didn’t have much to say, but I guess in the end, I really do.    Most of all, what I’d like to say this week – while I may have grumbled about it at the time – “Thank you Richard” for the opportunity to have this voice and blog, thank you for our wonderful life together,  thank you for being such an inspiration and handling all of this with dignity, grace and undaunting spirit.  

You are my hero.

All My Love,

Michelle XOX

PS.  Next week, it’s back to you Richard! It's your turn.

Home Sweet Home 2

Home Sweet Home Part 2

After what seemed like an eternity, I was finally released from the hospital on Wednesday after six grueling days with less than two hours of sleep per night. You do not fully realize the impact of all the noises in a hospital until you stay overnight. Beeps and buzzers, staff carting things through the hallways, doors slamming and the constant announcements.  While I am thankful for the wonderful care I had, on the sleep side of things - not so much.  I so desperately wanted to be home with my family, but my high fever and medical condition at the time, couldn't make that possible. 

I am so thankful to be home with my family and in the comfort of my own home. Being with family just helps you heal faster or at least feel better. Even though I am still struggling with sleep due to some ongoing pain, having my own bed, my own pillow, our air condition and ceiling fan, the darkness in our bedroom -  it really is my sanctuary. 

For now and moving forward, we will take things one day at a time.  Things have progressed, I'm off the clinical trial program, but I am still a fighter!  A lean, mean cancer fighting machine!

Ride to Conquer Cancer

Today is the day! Our son Jon has challenged himself to support cancer research and Princess Margaret Hospital, through biking 160 km. Today he begins that journey. We are so proud, and it looks like the weather is cooperating - not too hot or humid and the rain is holding off.  He has surpassed his goal three times already, reaching his first goal of $1000 dollars on his very first day registered! His current donations reached is at $2303. Thanks to all that have supported him, again much appreciated. It's not too late, you can still make a donation at the following link: 

Jon Erdmann's Page- Individual Rider

Princess Margaret Hospital is a world class research centre and working hard to find treatments and cures for cancer patients. Money well donated, I would say. 

Enjoying being home sweet home, and getting rest in my big comfy bed and still fighting,

Richard

What a Difference Two Weeks Makes!

Well thank goodness I had already prepared the 100th blog and only had a few minor changes and edits or most likely there would not have been a blog ready for last week's 100th edition. Let me explain further.

We have been planning a family vacation for some time now and last week was the week! We had booked one beautiful week at a cottage up in the Haliburton Highlands outside the town of Bancroft. We were all looking forward to it, time away from home, getting back to nature and hopefully some time to take our minds off our life circumstance and just relax and maybe get out on the lake. The weeks leading up to the vacation did not look promising as my aches and pains did not provide me with my comfort and we worried that I couldn't make the car ride and the fact that we would be two and half hours away from the larger hospitals. Michelle even asked if we should postpone or cancel but we make the decision to continue on (we could always turn back or come back home if needed), besides there was a small hospital in the town of Bancroft that we could get to. It would be all right, but I knew she was uncomfortable with the plan. We packed up the car (to the brim, I might add) and made our way. Josh and our dog Lily stayed home because he had to work and we knew Lily would add extra stress at the lake. Josh would be joining us later in the week. 

Michelle drove us all up to the cottage and we made it there in record time. I started to get chills and the shakes in the car ride up (thank goodness for Lily's blanket that we found in the back seat) , but it was a very hot day and we had the air conditioner on full tilt, especially so it would reach Jon and Sophie in the back seat.  We didn't think too much of it, because Michelle was also cold in the car, and thought perhaps it was the A/C.  When we arrived, I did what I could to help them unpack the car, but still felt chilled, so I went straight to bed. I kept saying how cold it was in the cottage, but that didn't make sense as Michelle and kids were hot, and did not find the cottage cold at all.  

I developed a high fever on the first night there, but it came down with tylenol and advil.  Michelle and the kids wanted to pack up and go home, if it wasn't for my stubbornness, I think that is what we would/should have done.  But to be honest, I downplayed it, and said we should try to stay. The fever did go down on Tuesday and we spent some lovely time during the day down by the water (although I did spend most of the day in bed too). I was feeling warm Tuesday night, my temp was just under the fever threshold of 38, but clearly something was not right and at 2 am, Michelle had the kids packing up and on standby ready to go.  She had already scoped out the nearest hospital, but again the temp came down hovering around normal, and I wanted to wait. Actually I was adamant that we wait. I did not want to ruin the family trip.  By Wednesday the fever had returned sitting at the threshold of 38 (it was heavily raining and wet), Michelle came into the room and quietly said, we can be packed up and ready to go in 5 mins - I need you home and in Newmarket. Bad things don't just go away, fevers just aren't a symptom to be ignored.  I finally agreed, and we packed up and came home. To be honest, I just wanted to crawl into my own bed.

After consulting with our medical team  we headed to the emergency department as we were getting quite concerned about what was happening. Princess Margaret Hospital was calling ahead to ensure they knew my medical history and that we were coming.  To make a long story short, after spending fourteen hours (that is not misprint, 14 hours - 13 of which were in a chair and crowded in a waiting room in the ER), I was finally admitted to the hospital.  For 1 hr of the wait, we had an exam room with a bed in it, and there was no way Michelle was going to let them kick us out of the room until I was admitted!  We were able to turn the lights down low and I was able to stretch out and have an ice pack, which helped a lot to make me more comfortable while we continued to wait.

They have done a series of tests during that fourteen hours and now that I've been in hospital as well as running a cocktail of antibiotics. The news that we were hoping not to have to hear (for quite a bit longer), were finally being spoken to us. The tumours were continuing to grow.   I would be moving on to palliative care focused on pain management rather than fighting the disease itself any further.

I am still in the hospital for a week now, trying to find the correct combination of painkillers to live as comfortable a life as possible and make sure the antibiotics are fighting the infection.  I want to be at home, and for a long as possible.

As devastating & disappointing as this news is for me and my family, we can still be proud of the battle we gave. Like so my people  before us and so many long after us, it is worthy to try and fight it, there are many medical advances, but cancer is an equally worthy opponent. 

We are now in the process of palliative care and with what this  means for me and us, as a family. In the weeks and hopefully months to come we will shift the focus of our blogs in this direction.

We hope you will join us!

Richard

100 Blogs

Well look at that! We have reached a milestone, 100 blog posts!

I am not much of a writer, but  I thought that I could manage sharing a few stories about my cancer journey. Here we are twenty-one months and 100 blogs later,  I am still here,  and still writing weekly blogs with the help of My Michelle.  I have to admit that there were times when I thought, why am continuing to write this blog? People have their own personal issues and concerns. They will lose interest and who really wants to hear about my personal struggles and successes with cancer anyway? 

Over time, I have come to realize though the thoughtful messages, comments and notes, that we are all dealing with cancer in some way or another, either personally or with a loved one, or a close friend or colleague. Cancer really does touch us all. My weekly blog writing, has for me become a source of purpose, of hope and a wonderful way to chronicle this crazy journey we are on while keeping my extended family, friends and colleagues updated on my weekly progress (or lack of progress). 

Others have told me that it inspires them, reminds them of their own cancer journey or that of someone they know or cared for. This makes me proud and thankful that I decided to share. I have learned that I am not in this journey alone. Besides my family, I have a 'army of support' around me.  

I wanted to share with you the titles of my 100 blog posts, not to brag or be boastful but to celebrate that I am still here, fighting this disease and because they truly represents my journey thus far. You can see from the titles that there have been many twists and turns and many ups and downs along the way. Who knows where this journey will take us next or how long it will continue. This is my life, as we know it now. Like any good drama or thriller, we are not at the climax of the story yet! This is my cancer journey, thanks for coming along for the ride with me. 

My Personal Cancer Journey Blog- By Richard & Michelle Erdmann

1. Unwelcomed News

2. Over the Next 20 Days

3. Needles, Tests and Scans Oh My!

4. Food, Glorious Food!

5. Hurry up and Wait!

6. My Radiation 101

7. You are Not Alone

8. My Chemo 101

9. Thoughts and Prayers

10. In those Moments

11. Blessing or Burden?

12. Stuck in Neutral

13. Cancer touches so many of us!

14. Side Effects: Short Term Pain for Long Term Gain?

15. Sometimes.... Laughter is the best medicine!

16. My Michelle 

17. Ups and Downs

18. Supporting Cancer Research

19. Family- Home Sweet Home

20. Darcy- My Faithful Companion

21. New Year, New Decade

22. Kitchen Dancing

23. Side Effects: The 5 Senses

24. My "Bottle Buddy"

25. Beating the Average

26. World Cancer Day- February 4th

27. Spring Cleaning- Got Junk?

28. Words to Live By

29. Family is Everything!

30. Why am I still taking out the garbage?

31. Trying to find joy, everyday!

32. SCAN-xiety!

33. Uncertain Times

34. Everyday Heroes!

35. The Power of Walking

36. Home Movies: Treasuring the Moments

37. Just keep swimming, swimming, swimming!

38. Today's Forecast: 100% Change of Waiting!

39. This morning, with you, having coffee

40. Honouring Mothers

41. Unsinkable #unsinkable

42. Is this our new Normal?

43. Anticipating a perfect summer day!

44. Remember When....

45. Celebrations and Milestones

46. SCAN-xiety 2.0 Unwelcome News

47. Celebrating Fathers

48. Together is my favourite place to be

49. Fireworks- It's not what you think!

50. I'll get by with a little help from my friends!

51. Gone Fishin'

52. Our Photographer

53. A Blessing and a Curse

54. Don't Poke the Bear!

55. Tired!

56. Standing Tall Through it All

57. Green Thumb Distraction

58. Today's Forecast: Foggy with a chance of forgetfulness

59. Back to School Thoughts

60. One Year BLOGiversary!

61. I get knocked down... but I get up again!

62. Birthday Season: A.K.A. Cake Month!

63. Here we go again!

64. Happiness is Medicine too Dad!

65. Waiting!

66. Our Life is like a Roller Coaster!

67. Bottle Buddy is Back!

68. Finding Distractions!

69. What's For Dinner?

70. Holiday Traditions

71. Thursdays!

72. Let the Countdown Begin!

73. For the Birds!

74. New Year, New Hope!

75. Groundhog Day!

76. I Want to Break Free!

77. Back to the Drawing Board

78. Not Playing the Waiting Game!

79. B is for Biopsy

80. Sometimes I forget!

81. Supporting my local Hospital and Cancer Centre

82. Negative/Positive

83. In My Shoes

84. And So it Begins Again....

85. 1st....2nd....3rd....

86. A Room with a View: Looking out my Hospital Window

87. Home Sweet Home

88. Putting on our Shoes

89. When In Sickness and in Health, Really Matters

90. Take a Deep Breath In - Hold It - Breathe Out  

91. PIVOT!  SEIZE TODAY!

92. When one door slams shut.... another door opens!

93. Summer Breeze

94. Rainy Day Blues

95. 33

96. Journey vs. Battle

97. Lean Mean Cancer Fighting Machine!

98. If I am knitting, everything must be ok, right?

99. Pain in the @#$% !

100. 100 Blogs

Again thank you for traveling this journey with us. We appreciate your ongoing support and words of encouragement along the way. We continue to hope for the journey to continue for as long as possible and we thank you for joining us along the way!

Richard & Michelle

Pain in the @#$% !

Well this second clinical trial treatment is certaining hitting me harder than the first or any other previous treatment really. Hopefully that is a sign that things are working and making a difference! I am tired, irritable and can't seem to get comfortable for any length of time. I am napping more than usual and just don't seem to have the same level of energy that I used to have. 

It has crossed my mind, that this may not be the new treatment at all that is causing this discomfort and irritability, but is an evolution and the progression of my symptoms with time. On the other hand, or glass half full perspective -  perhaps my new treatment is working and is fighting my cancer on the inside and this pain is the price to pay on the battlefield. I am hoping that it is the latter of course and all this discomfort will be worth it -- that it is making a difference and is actually shrinking my tumors. 

One of issues I am having this  this time around is back pain (and well something else we don't often talk about, constipation).  Dealing with the first issue - I don't know about you but next to ear aches, I find back pain  most frustrating as you can't really solve the issue. You can subdue it for awhile but it always seems to come back. It is not debilitating pain (at the moment at least) but a constant annoying pain that increases and decreases in intensity throughout the day (or the night for that matter). It is the type of pain that doesn't let you get very comfortable either sitting or lying down. The problem with taking pills to help with the pain, is other complications start to occur.  For example, one of the side effects of the codeine is it can cause - yes I am saying it in a blog - constipation. They sure do!  This is also a potential side effect of my immunotherapy medications. A double whammy. Yippee! Which brings us to my second symptom, a real pain in the @#$%! It seems that to try to solve one problem, you create another one!  Not really a great topic of discussion really but I promised to be honest in my blog and wanted to share some of the negative sides to having cancer, beyond the cancer itself.  I have never been the type of person to take numerous medications for my ailments, but my list of daily pills and supplementary pills is beginning to grow.

I am back to taking some meal replacement drinks to supplement my calorie intake. Despite being stubborn, reluctant and holding off for a long as I could, I had to admit defeat and return to using them to help provide me with my daily nutritional needs. This brings back memories of the beginning of my cancer journey when they were my primary source of nutrition. I hoped to not return there if possible.  

Overall I should not be complaining as I am sure that there are many other cancer patients out there that have it much worse than me in terms of side effects and pain and wish this was all the side effects that they had. I shouldn't complain really, in fact I need to come to the realization that it may get much worse as time goes on. We shall see. For right now while there is pain it seems bearable and manageable and I can live with this level of discomfort. 

100 Blogs!

Next week is a special week for My Personal Cancer Journey blog as we celebrate 100 blog posts. I can't really believe we have reached this milestone and I never expected to still be here writing this weekly blog for this long. An amazing milestone for sure.  Be sure to check out next week special blog post.

In the meantime, as the saying goes:  "no pain, no gain" right? Let's hope so. 

Richard

If I am knitting, everything must be okay, right?

This week's blog comes courtesy of My Michelle.

I’ve grown up in a family of knitters – my sisters knit, my mother knitted, my grandmother knitted, Richard’s mom knitted, my sister in law is a fabulous knitter and I am sure there is a much deeper legacy if we go back in the family tree, of knitters.  Some of my most prized possessions are those little keepsake sweaters and baby blankets that my mom and sisters had knitted for each of our children upon their birth.  I have those tucked away and ready to pass on to our children when the time is right, and they bring little ones into the world.  

I had mentioned before, that my mother had a severe stroke several years ago now.  In her home, there is a small wooden chest that was made from a refurbished piece of furniture from her childhood home, and in it she had stored all of her knitting books, needles and odds and sods. I know there are some little buttons she had picked up to put on a sweater for one of the grandkids in one of the drawers, leftover yarn from projects she finished in another little corner, vintage pamphlets and patterns that she either made or always planned to get to in the bottom drawer, but time got away on her.

Richard’s mom, so proud of her son going to Queen’s University, knit him this amazing tricolour scarf – it must be at least 12 feet long, with this knotted fringe, you can wrap it around your neck several times and have lots of length left.   A lot of love and pride went into it’s making.  Every homecoming weekend we were able to attend, we would dig out that scarf and Richard would put on his Queen’s jacket and we would blend into the crowd of other proud graduate students out to cheer on the Queen’s Golden Gaels football game – belting out our “Oil thigh…..”.  When our daughter was accepted at Queens, Richard passed the scarf on to her and it had a place of honour and on display in residence at Victoria Hall, and later in her student apartment and it will carry on there for another couple years as she does her graduate work at Queens.  Oh, the stories that old scarf could tell!  My sister in law who is a world class knitter, knit me this amazing fair isle sweater from a pattern I had found in an old British magazine.  I wore that sweater for many years on my treks around Queen’s campus, the envy of many I am sure!  I still have that sweater and wear it every fall.  

I have also been known to break out the needles now and again and knit. I don’t seem to remember a time of learning to knit, it was just a natural thing, I think I just kind of learned it from watching my mother knit.  As a university student and when money was tight, I remember making home knit gloves for all of my friends at Queens, with these pretty cables on the wrist – I was pretty proud of how they turned out.  I remember knitting Richard this dark green sweater one year as well, again money was tight, but that sweater was made with love.  We were married for 7 years before we were blessed with our first son, Jonathan and it wasn’t an easy pregnancy.  I remember my younger sister had knit me a little lumbar pillow to help me get comfortable, I still have that little pillow tucked away.  My older sister Dianne knit a beautiful christening shawl for our children, and it is a treasured family heirloom.

But like most things, it’s hard to find time and energy to knit when you are busy with juggling a family with 2 careers, commuting, pursuing graduate school, and raising a family.  Now and again over the years, I’ve made a project or two, but it has really been since Richard was diagnosed that I’ve started to pick up the needles and work on a few things.  Stress knitting you might say.  I’m really into knitting home made socks, and always looking for a challenge, I  have worked out a few original designs, borrowing something from this pattern, and something from that pattern and working out the math (yes I manage to work in the geekiness, being a science girl at heart), to create something new.  I finished a pair and sent it to our daughter at Queens to keep her warm shortly after he was first diagnosed.   I’ve finished 4 pairs while he was on the first round of chemo.  Knitted a sweater on the 2^nd round of chemo.  Started more socks on the 3^rd round of chemo – I was in a bit of a knitting obsession you might say.  Then as the news got worse, the knitting started to drift away.  Richard and the kids keep trying to get me back on track, gave me some more wool for Christmas and a beautiful knitting bowl to hold my yarn, a few books and patterns, and yet it still sits in the bag.  I have a beautiful sweater I started that still sits on the needles.  I seem to have lost the spark, and I don’t know why.  

I think it may have something to do with how knitting is more than just knitting to me.  It’s creating something for someone to give away, for them to enjoy and wear, often attached to life milestones or holidays.  My subconscious  (well now that I am thinking about it) my conscious mind, is kind of blocking me because I don’t want to associate this next project with the troubled times we are treading.  

I think the day will come, when I’ll be able to pick up the needles again, and maybe then the rhythmic motion, stitch counting, and creating will bring me comfort.  I have a whole queue of projects and people waiting for things, not the least is our son Josh and a nice toque (I haven't forgotten Josh),  
Maybe I can make something from my mother’s little dresser and have a part of her with me or give away to my siblings, we miss her so.  Maybe I can get that Queens scarf back from Sophie and give it a place of pride around my neck and celebrate the many happy memories of a family well loved, and my Richard.

Knitting is like a little bit of home to me,

Love Michelle

Lean Mean Cancer Fighting Machine!

Well it is hard to believe that I am already completed my second round in my new cancer trial. Time does fly by. The first round really knocked me down for a few days but so far the second round doesn't seem to have as much punch as the first. I seem to have bounced back quicker this time. I am so thankful because I was out of commission for quite a few days the last time with extreme fatigue and soreness.

This week, I was late arriving for my treatment due to an accident on the 404, which created a huge back up of traffic for what seemed like kilometres. I could feel my stress levels going up as I have never missed or been late for an appointment so far. I was worried that I might have to wait for another opening later in the day and this was a concern as it was already going to be a seven hour day as it was, or even worse, it could have been cancelled and need to be rescheduled.  Luckily it did not delay the start of my treatment and I was able to start up fairly quickly after my arrival. 

As I sat waiting to be paged to my chemo suite, I scanned the room (as I always do) and noticed a man across from me wearing a t-shirt that caught my eye. It had the following statement on it: Lean, Mean Cancer Fighting Machine. This really struck me. What a great statement! What an empowering statement. It was true. Each of us here waiting for our buzzers to go off to let us know we were ready to start our treatment were fighters. (Yes, when I say buzzer, I mean like a little buzzer you get when you are waiting for a table at "The Keg").  We are all mean, lean cancer fighting machines! Well to be honest, I'm not that lean, and I'm really not that mean, but definitely a cancer fighting machine! I knew right then and there that I needed one of those t-shirts!  I quickly searched it up on Amazon, and wouldn't you know it, my t-shirt has been ordered and should ship in a few days. I will wear it with pride.

Once my buzzer went off and I entered the "purple" chemo section of the hospital and settled into my chair, wouldn't you know it but the man with the Lean, Mean, Cancer Fighting Machine t-shirt was seated directly opposite of me. I just had to tell him that I liked his t-shirt. He smiled and stated that a friend had bought it for him after his cancer had come back for a second time. He was starting treatments today to try to beat cancer yet again. What a cancer fighting machine!

I overheard one of the nurses tell him that they treat over 150 people per day in the chemo suites on the fourth floor. There are 18 floors at the Princess Margaret hospital. No matter which floor I visit, it seems to be full of patients and hospital staff. From young to old, from the hardy to the extremely frail, from those that can walk independently to those that have to be transported by wheelchair, all races and diverse backgrounds are represented here. Cancer doesn't discriminate. It still surprises me to this day what an impact cancer has on so many of our lives. I did not see it or take the time to see it before I had cancer, for that I am remorseful.

After seven long hours at the hospital, I began the journey back up the 404 in stop and go traffic to return to my home, sweet, home. My family was anxiously waiting for my arrival (calling me in the car for arrival time status updates). It is amazing how as soon as you pull into your driveway, your stress levels go down and you can finally begin to relax after an intense day. A bit to eat, a cold drink, resting on my patio and filling Michelle in on the day's adventures were next on the agenda.

Going to Princess Margaret now has become a fairly routine event in my life. I go at least a few times every other week. I am getting pretty familiar with the hospital itself, the routines and procedures that will happen during treatment and I even know some of the staff by first name now. I am so thankful for the wonderful care that I am receiving there but deep down I wish that I did not have to go there and this wasn't part of my life. 

"You have been assigned this mountain to show others it can be moved." ~ Author Unknown

I am a lean, mean, cancer fighting machine and I've got my whole team in my corner!

Richard

 

Journey vs. Battle

When I started my cancer blog over a year ago now, I struggled with what terminology I would use to discuss and share my own personal experiences along the way. Was it a cancer journey or a cancer battle? Was I fighting and battling cancer or was I dealing with a disease that would change my life. How would we handle it? How would we navigate what was yet to come?

Before starting my blog I skimmed some other cancer blogs and found that most were referring to their journey as a 'battle' or 'fight' against cancer. They included a lot of war terminology that seemed harsh and inappropriate to me at the time but now that I have been on this journey and have experienced all that cancer brings to my life and my family's life, it really is an accurate metaphor for the journey. I had purposely chosen to use the word 'journey' instead because I preferred to use non violent terms of reference and wanted to remain optimistic and positive throughout the posts but make no mistake this is a battle! This is the fight of my life, so I thought for this blog, I'd try using the battle analogy - maybe it reflects a little how I am feeling today!

Mission Possible?

Right from the start of this journey/battle/fight we were given terrible odds of winning (or surviving really). When you are told that you have three months to a year to live at your first appointment with your oncologist, your heart sinks, you feel hopeless and finding the will to 'fight' on doesn't really enter the picture at that particular moment in time. Surprisingly after the reality and scope of the situation finally does sink in, you quickly realize all that you have worth 'fighting' for, you regroup or pivot, you plan your 'strategies of attack' and your formulate the 'ongoing battle plan' to 'fight' back against this worthy enemy. 

Using Every Tool Available in my Arsenal

From the beginning of my cancer diagnosis, my  team has used every treatment option available to 'battle' my cancer. I have gone through radiation and three different chemotherapy treatments and now two clinical trials. Although my cancer did 'retreat' back a few times during these treatments, it ultimately fought back and moved on to new battlegrounds in my body. As Michelle likes to point out and remind me, we may have lost these battles but they did provide me/us with additional time and I am still here today fighting on, twenty one months later, still able to talk about the fight and still able to battle on. It's not over yet!

Collateral Damage

I have experienced some side effects as a result of my treatment regimens that have included an ongoing compromised immune system, various side effects with various levels of discomfort, pain and intensity.  My body weight continues to fluctuate and has once again begun to decrease due to an ongoing lack of appetite and some difficulty swallowing. Increased pain and soreness in various regions of my  body and some sleepless nights are the new norm for me I guess. 

One piece of collateral damage for cancer patients that doesn't get talked about much is the emotional side of cancer and the toll that cancer takes on the patient, caregivers and family. Your emotional quality of life and that of your family suffers.  You are constantly fighting off negative emotions, moments of despair and melancholy. You are scheduling your life between appointments, treatments and recovery days. Your hopes and dreams for the future are pushed to the here and now. You see others that are moving forward with their lives and planning for the future, exploring fun and exciting retirement options and you just can't help but feel a little jealous and envious of them. We should be doing this too! Your children's lives are also impacted by the 'battle'. Although they try to move forward and continue on as normal as possible, it's not normal and will never be normal again. Cancer is not going away. The worry and concerns are always there. It is hard to focus on your own new exciting life journey when they see the struggles and worries in their parents.  The lingering cloud of what is to come is always just a thought away.

Army of Support

Every 'war' needs a strong army to 'battle'. I can honestly say that I feel that I have a strong army of support with me, every step of the way. I am so thankful for the 'army of support' that we have received along the way. This blog has allowed me to share my journey and in turn learn about the personal 'battles' that many of you are facing or have faced yourself. We have come to realize that you can not fight this 'battle' alone and that it takes a community of supporters to help along the way. We are so grateful to have you by our side and for your words of encouragement, support and prayers. 

Fighting the Good Fight

We will, as a family, continue to 'fight' the good 'fight' for as long and as hard as possible. It has not been easy. This is a battle of wills and I can be very stubborn if I have to be!

Whatever I/we choose to call it, it is the fight of my life. I am just a stubborn as cancer can be. 

"We will never surrender!" ~ Winston Churchill

Thanks for supporting me along the way.  

Richard

33

Well the first week of my new treatment is now over. Time keeps moving forward. I am so glad that this new option is available to me at this time and we were not left waiting. 

How am I doing?:

Thankfully my first treatment on the clinical trial seems pretty uneventful overall. I spent the night at Princess Margaret at the phase 1 clinic on Monday and had tests and appointments for most of the day on Tuesday. It was a long two days for sure and while this treatment has less ongoing blood samples and monitoring and only one overnight stay this time around, the treatment itself does seem to be more intensive and a little harder on me and my system overall. 

Tired:

I am definitely more tired than usual this time around. It could be partly due to the lack of sleep during my stay at the hospital. I can't really sleep well in the hospital. I think I mentioned this before in a previous post, but their pillows suck! I have a firm, memory foam pillow at home and they have flat, thin pillows. Not a match for me that is for sure. I did get to watch hockey game seven between the Leafs and the Habs on my laptop but as we now all know, the outcome was not what I was hoping for. Will we ever make it to round two in the playoffs! 

Are naps my new normal?:

I think I went for at least four naps yesterday. Definitely not my usual self. I am normally lucky if I fit one good nap in. Oh well, I have to give myself a bit of a break as I did just start a new cancer treatment. I can't expect to be peppy and ready to go all the time. Just taking some time to enjoy my time on the backyard deck, listening to the birds and surveying the gardens and spending time with a good cup of coffee and talking to Michelle and the kids, is good enough for today.

3 is my Lucky Number:

Today Michelle and I celebrate 33 years as a married couple, but we have known each other for 35 years. Amazing really not only how fast time has gone by, but also how lucky I have been to find my soul mate.  Who knew that night 35 years ago when I asked her to dance and she said "yes", that we would build such an amazing life together.  I must say, that  based on my prognosis, I did not expect to be here to celebrate this milestone this year, that is for sure. We are so glad that we can celebrate together. We had plans for a beautiful dinner on the deck tonight, but we are just going to push that out to next week, and hopefully I'll feel a little more like myself.  Ice cream, now that still goes down ok.  For our wedding dinner, we had strawberry ice cream parfaits for dessert - we are going to indulge in that tonight - a strawberry shake for me and the sundae for Michelle (and I am sure she will find some way to include chocolate sauce, LOL).  

Three has always been a lucky number for me and this year is a double three for us, so come on numbers, bring me a little luck. 

Here's hoping for as many more years as possible (with many more ice creams and with a strawberry on top!)

Richard