Tuesday, April 29, 2014

Laughter is the Best Medicine

Hope Spring Cancer Support Centre is a place you hear about, you've heard its name but until you truly need the resources and services offered there you would not appreciate how fortunate we are to have this facility right here in Kitchener. I will share the amazing support services available in another post.

As I approach my 2nd round of Chemotherapy treatment this coming Friday, I know that the inevitable will soon be happening. ABVD chemotherapy treatment almost always leads to hair loss. It is a hurdle I know I will need to face and the anticipation of it happening is almost as bad as the waiting for treatment to start. Those who know me well will know that Michelle needs to have things organized and a plan in place. I enlisted my best friend Carole to join me for an appointment at Hope Spring's Boutique to try on wigs. For those who don't realize this, Hope Spring receives donations in order to purchase wigs so that those facing cancer are able to take home a wig free of charge to use during their treatment. You are able to choose from a huge assortment and try them on privately, take pictures and best of all LAUGH.

We all have friends in our lives who exist for different reasons. Carole is "my person". The Christina to my Meredith. She is the friend who I can confide my most crazy thoughts, who I never have to apologize to and who will never judge. Best of all, while she has worn her emotions on her sleeve dealing with my diagnosis as any best friend would, she was up for the task of making me laugh and is able to turn the reality of wearing a wig into an afternoon experience that as 21 year olds dancing on bars in Niagara Falls or 40 year olds jamming with the band in Manhattan we would have never envisioned that one of us would be facing cancer. That doesn't happen to us.

I wouldn't want to share this with anyone else. Of course, she was only happy to take pictures. I figured out how to navigate this blogsite and add pictures. I bet some of you were wondering... No pictures, Michelle? Worry no more.

As you can see, there were many smiles. Many wigs that in principle were funny but in the practical, Libra Michelle, not so much. Angie, who is the volunteer who assisted us in the Boutique was a wealth of information. Who knew there was so much to learn about wigs? In the end, I settled on a wig that stayed true to my current self, it is exactly like me and will allow me to feel like Michelle, look like Michelle and in the beginning ease me into this new transition. Thank you Carole and Angie for allowing me to share my laughter and my tears.


Saturday, April 26, 2014

Crazy Sexy Cancer Tips

"Good friends are like stars, you don't have to see them, to know that they are there."

There are just some people who come into your life for just the right reason and at just the right time. When we moved into our first home in 1999, we were blessed to share the wall of our cute semi-detached house with the greatest neighbours. For the next ten years, our kids grew up together, as close as siblings. 2009, even though we only moved down the street, proximity in busy lives makes for visits that are fewer and far between. It doesn't mean that I don't know that this family is in our lives. I wouldn't have made it through having two kids a year apart in age with a husband working shift work without Michele. A testament to how well she knows me is the book she brought me when she visited this week. "Crazy, Sexy, Cancer Tips" by Kris Carr. "This book is a collection of candid revelations, personal stories, resources, recipes and is an inspiring, empowering and informative tool for any woman newly diagnosed with cancer."

I have thoroughly enjoyed reading this book, leafing through it, writing post-it notes, notes in the margins, quotes. It is funny and much like having a 200 page dialogue with a best friend who actually knows what it's like to have cancer.  Michele, thank you. Thank you for knowing me so well and bringing me words that give me hope, make me laugh and provide a different perspective for coping with my cancer diagnosis. 

Here are a few revelations and quotes I have taken away from my reading so far.

-Ask yourself "Does it tire me or inspire me?"
-Silence helps no one
-Don't try to be the "Do It All Survivor"
-Journaling is an inexpensive way to give yourself therapy
-Make time to be present in your cancer posse circle, even when it's hard. Don't drop off the face of the Earth. Show up.
-"I know I can decide if I'm going to learn something, but I can't decide what the something is"
-"You are a survivor and someone who goes the distance, this isn't about the sprint but the long haul."
-Remove these words from your vocabulary - maybe, sure, I don't know and you decide
-Ask "Am I doing what I want to be doing?"
-Give yourself permission to let people take care of you
-Put yourself first. Honour what you want to do
-Stop apologizing and saying I'm sorry (This is one I am bad for.)
-Kids need knowledge and getting answers from you is best

I look forward to a weekend of rest, relaxation, re-organization, rejuvenation and restoration. Gearing up for a busy week, ending in my 2nd chemotherapy treatment. I have several great visits and field trips planned, giving me much to look forward to. I continue to require rest and am becoming better equipped at predicting how I will respond. Thank you to my staff for the beautiful flowers that arrived Friday, brightening a dreary lonely day. I love opening the mail each day, your cards mean more than you realize such a simple gesture can be.

Wednesday, April 23, 2014

The Good, The Bad and the Ugly

I will begin with an excerpt from an email that I received from a dear friend, who while is many miles away always seems to sound like he is right there with us. His advice was timely and as always came at the most needed time.

"When I'm in a running race, and experiencing a world of hurt.. sometimes you have to take your eyes off the finish line, which can seem discouragingly far away. 

If you cast your eyes closer to the ground in front of you, and just keep focused on the next step-- before you know it, you have made a whole lot of progress" K.B

The past few days this is the image that I have needed to draw upon. Day 6 Post-chemo and I have seen my share of the good, the bad and the ugly. Despite my cheery blog posts, there have been moments of darkness where sometimes you wonder how you are going to make it through the next six months. Then you cast your eyes to the ground and focus on the next day. 
 
The Good. I am spending a tremendous amount of time sleeping, 3-4 hour naps and 11-12 hour sleeps at night. Not unbroken sleep, lots of tossing and turning, medications, trying to find a comfortable spot but sleep. Something that has alluded me over the past two months, searching for my diagnosis.  I am listening to my body and sleeping when I feel the need to. The luxury of having days laid out ahead of you with only yourself to focus on healing gives me the time I need to rest. 

The Good. The ability to stay in contact with so many of my loved ones through computer and phone is like a lifeline to me when I am having a moment of weakness. Thank you for being there for me to reach out to.

The Bad. The fatigue and lack of energy, I liken it to having the flu - all the time. Simple tasks seem to large scale and difficult to manage. But I drag myself to the end of the task. A promise I made to myself is to get up, have a shower every day, get myself ready to face the world, dressed in real clothes, I find I feel so much better when I do this one simple thing. I find the sunshine and make sure I stay there.

The Ugly. Mouthsores and sore gums. My biggest struggle the past few days has been an incredibly sore mouth. This is a common side effect. I was told if this happens to call the Triage Line at the Cancer Centre. Once again, incredible care and instant help. There is a Magic Mouthwash. This is actually what it is called on the label. It is a compounded concoction that only certain pharmacies can create. The nurse figured out the closest pharmacy to where we live and called it in, they even deliver! It has been a godsend and turned the ugly into something very manageable. Thank you god.

I hope and pray that the side effects lessen in their strength and virility over the next few days. I have my next Chemotherapy treatment next Friday, May 2. My itinerary for the day includes bloodwork, meeting with the pharmacist, wait for bloodwork results and then finally treatment. A four hour process. This coming Friday I will be having a MUGA scan at Grand River. This test measures the strength of my heart and how it pumps blood. A 2 hour process that I hope goes smoothly. Apparently one of the chemo drugs is incredibly taxing on your heart so they need to establish a baseline so that they can make sure it isn't damaging my heart functioning. This test will be done half way through my treatment to compare results. 

I saw the surgeon, Dr Maurice who removed the lymph node from under my arm today. All is well and I am healing nicely. The stitches have come out and although I will be left with some permanent numbness and nerve damage, I have full range of motion in my arm so nothing to worry about. Still some residual pain but I am told this is very normal.

The kindness of others continues to humble us, we are so very fortunate. I was up for a couple of visits this week, in particular a former colleague who I share so many fond memories of Courtland days, something about that place bonds you together and I look forward to laughter therapy tomorrow with my best friend. We are going to perhaps take a field trip to Hopesprings Cancer Support Centre tomorrow and check out their Boutique. Trying to prepare myself for the inevitable task of choosing a wig and other assorted head coverings that I will soon need. I pray for a sound sleep tonight, safe travels to Jason's parents as they make their way home from a well deserved mini-vacation to Florida and I thank modern medicine for Magic Mouthwash.

Saturday, April 19, 2014

How Am I Feeling Today?

"Positive thinking isn't about expecting the best to happen every time but, accepting that whatever happens is the best for this moment, this day." 

I arrived home from the hospital around 4:30 Friday. It is a strange feeling expecting to feel different but feeling the same. I kept expecting for something to happen, a nervous anticipation. We usually celebrate Good Friday with our dear friends who we affectionately refer to as K and K. Cam was at their house with the Buche boys, three brothers who are truly like brothers to him. We decided to collect Jordan from her girlfriends and because I felt well enough, let's go with our original plan until my body tells me otherwise. It was so wonderful to be in a full house, with lots of action and good feelings. I am forever grateful for what they bring to our lives. We enjoyed an awesome dinner of baked salmon, basmati rice, asparagus and fresh bread. We had a great visit and I felt surrounded by love and laughter. After dinner, my tummy was starting to get a little queasy and cramped up. I expected that something was going to happen. Everyone knew that when it was time to go, the exit towards the door would happen quickly. We graciously left, thanking them for a wonderful few hours. I took my next set of medications and got myself set up in bed, i-pad, phone, Netflix really can Good Friday after a great meal get any better? Well no soon enough, I was fast asleep. Woke up for a nausea medication around 10:00 pm, and slept straight until 6:00 am, then again until 9:00 am. I awoke with little to no nausea. My body needed all that rest and I felt pretty good. I definitely notice a metallic taste in my mouth along with a very dry mouth sensation. A mild headache that Tylenol took care of. Today is a day for reading and reflecting on the mountain of information I have received about Hodgkins. Mundane tasks of laundry and tidying are keeping me busy and I appreciate having the strength to do those things. The sun is shining and we are going to go for a short walk soon. I will take each day as it comes. Knowing from my conversations with the knowledgeable nurses, the next few days will be perhaps a peak of the fatigue that I may be feeling but everyone responds so differently that possibly that won't happen in the same way for me. There are quite a few pre-cautions and things I need to watch for and have been given strict instructions to go directly to emergency for, particularly if I have a fever  at all over 38.0 C. This is why it is so important that not only myself and my family practice handwashing and sanitizing religiously. It is also very very important due to the nature of my cancer and immune system as my white blood cell counts will drop dangerously that I do not come into contact with infection. Our visitors will need to be careful to use hand sanitizer when they come in our house and we are not able to have anyone over with a cold or who has been sick. They could not stress enough to me. Which is why there was not any discussion with the Oncologist about my stopping work during chemotherapy. The risks are far too high. As he said, in a supportive, caring manner, "You don't have a choice, you want to live". 

I am happy to report that the right side of my neck which has been very painful and tender to touch, no longer hurts all. I can even confidently say that it feels like the lumps have shrunk a bit. There is definitely way less pain!! Under my arm where the biopsy was is definitely healing fine, the swelling has gone down and it doesn't seem quite as achy. Part of me wonders whether this is all wishful thinking in my head but I will take it!!

I take this journey one day at a time, uncharted territory. Thank you for your continue love and prayers this Easter weekend. Give thanks for your health, you family and how blessed we truly are.

Hospital Stay and Chemotherapy #1A

"People are like stained glass. They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is light from within" Elisabeth Kubler-Ross.

I will start off with this quote on a card from a beautiful colleague. While you hid in the anonymity of secret bunny. I know who you are. Thank you.

  Let me start off by saying that this blog while a great way to update our friends and family on my kicking Hodgkin a$$, I would say that it is more for me to journal and keep track of each day. Days become mixed together and blurry when you try and look back. This is particularly helpful when it seems like everyone new nurse, doctor or clinic I am asked to review and timeline how I got to where I am today. So that being said, feel free to read, comment which I would love to hear who is reading this, but there will be posts that are lengthy and I know you are all busy and I am trying to share without it being "too much information", I know you are busy and have full lives, as we do

I was admitted to the 6th floor Oncology unit at Grand River Hospital Thursday night, not because I was sick and need to be hospitalized but that was the quickest and most efficient way to get my first chemo treatment started. I also need one more test completed and this was faster accomplished as an in-patient. I went through the whole admission process and then I was pretty much on my own, an easy patient considering all the very sick people who unfortunately filled the 6th floor. I marvel at the nurses, they literally don't stop and it is a job that I am thankful there are so many caring individuals who choose this profession!! When I tell them that I am a Special Education Teacher, they comment, "I don't know how you do that". Well I say the same for the nurses and other staff in the hospitals and cancer clinics. I wouldn't say my sleep was all that restful with lights on, people talking and a very sick patient next to me but I did manage to sleep a bit.

I was awoken at 6:30 am to have bloodwork done, good morning! I then lounged in bed, waiting as I knew I was being taken sometime "first thing in the morning" for a CT scan of my abdomen. I guess they needed this done to make absolute sure there aren't cancer cells anywhere in that area even though I already had the gallium scan. I waited and dozed off until around 8:00 am. The nurse was looking into when this would be happening because I couldn't eat until after it was done. Glitch happened in that someone when they entered the request order said I was an out-patient not an in-patient so the CT clinic was waiting for me to show up. Not going to happen. Oops. So around 9:30 I was brought two huge water bottles to drink, some concoxtion of iodine and water. Didn't taste too bad, I had to drink one whole bottle between 9:40-10:00 then another bottle at 10:10. I was taken around 10:30 for the test which was uneventful. I am getting pretty good at laying with my arms over my head, not moving for long periods of time.


My IV was started prior to the CT scan to get me ready for my chemo treatment. The nurse had a bit of trouble finding a vein. After three rounds of bloodwork in two days, it was a bit tricky. She mentioned that I may end up being a candidate for a Port-o-cath, which is a permanent spot where they can hook you up to take blood and give IV chemo. She managed to find a vein in the crook of my right elbow. I ate some breakfast and Jason brought me a coffee from Tim Horton's (Thanks Secret Bunny) Yes, I asked about coffee, no problems if I want to have a coffee in the morning. Coffee is one thing in my day that makes me pretty happy. Debra was my nurse for the day, a lovely lady. She explained and answered so many of our questions, even though I know how incredibly busy she was. I also learned that chemo is quite a process.

First I had two bags of anti-nausea medication drip down into my IV. Then Debra comes all geared up, full gown, gloves, two masks and special waste disposal that everyone in contact with me goes straight into. The first medication of ABVD therapy was Bleomycin.  This drug is "pushed" through the IV by the nurse, takes about 5-10 minutes. The next drug given was a red drug in appearance Doxorubicin. This will make your urine appear red. Fun! This was also given my injection. Next I had a bag of Benadryl drip through which took a good 15-20 minutes. This made me a bit sleepy. Normally when I am an out-patient, I will be told to take Benadryl at home before I come. Next was the third drug that is pushed through was Vinblastine. Then I had a bag of Saline solution drip for a little while and had a bit of break, where I had a short snooze. Jason sat and read and played video games, chatted with me through all this. It was so nice to have his company. The last medication was Decarbazine which is in a bag that drips through the IV, it takes about 60-90 minutes. At first, I had alot of pain all up and down my arm that the IV was in. She stopped it, ran some more saline through injection and then slowed down the drip it helped a little. Still very painful and achy almost like I had put my arm in something really cold. She wrapped my arm in a warm blanket and that helped. I chatted with Jason, texted friends and tried to read a magazine, hard when I couldn't bend my arm. All in all, the chemo started at 12:00 and ended around 4:00, I should expect it to be a bit faster as an outpatient. Soon after that I was discharged with my medications to take at home.

I have three medications to take at home. I take Ondansetron twice a day for 3 days as an anti-nausea prevention drug. Then Allopurinol which is once a day for 21 days, this helps flush the toxins out of my system and help my kidneys process the medications. I need to drinks lots and lots of water and clear fluids all the time. The last medication is Prochlorazine which I can take up to 4 times a day for the more severe nausea. I have only had to take this once so far. I am also allowed to take Gravol which isn't quite as strong. I have Tylenol which I can take for pain or fever. I haven't had any fever issues yet and did take some Tylenol for very achy legs, that I had last night.

I will explain more of my reactions and lovely side effects post-chemo in the next post. Thankfully, they have been very minor and I so far on Day 2 can say Michelle 1 Hodgkins 0. Take that cancer!!!


Thursday, April 17, 2014

Bam! Bam!

Wow! What a day! It started bright and early registering at the Cancer Centre at 8:30 am. I was directed to Clinic B. It was a bit of a wait, where we need to enter our health status in a online kiosk to manage our symptoms. I did learn that I will have Dr. Stevens as my primary physician. He is a Hematologist but also an Oncologist. There was some initial mis-communication as I was referred prior to them realizing I would require a second biopsy to confirm my diagnosis. Hence, first I was referred to Dr. McCarron who was consulting I believe on some of my results. But Dr. Stevens will be in charge of my treatment and who will be steering my ship.

After a lengthy wait and question and answer period with the nurse, I finally met Dr. Stevens. As an aside, it is surprising to both Jason and myself that my history has been re-stated several different times to professionals at Grand River Cancer Centre. First question being, "tell us what brings you here to the Cancer Centre today." I feel as though I answer the same questions. Like don't they document that for someone? I will work on that. I should type up my history so I can just hand the whole story of life to them all ready!! (Type A I know)

Dr. Stevens, how does one describe such a positive, warm individual? He reminds me of a knowledgeable, smart Will Ferrell? And I mean that in a good way. I know you have to picture that in your head! He exudes happy and I felt instantly at ease. He had copies of all the biopsies and tests done to date and explained what each one meant, in very easy to understand lay-man's terms. He explained what my treatment regime will look like if all goes to plan. And the most important part of this post!!

I am being admitted to the 6th floor Oncology unit tonight and after an early morning CT scan, my first round 1A of Chemotherapy begins tomorrow Friday April 18, 2014. I will be having the standard Hodgkins protocol which is called ABVD chemotherapy which is delivered via intravenous. It takes about a half a day to finish one treatment.

The reason I will be an in-patient for this first round of chemo is that the out patient clinic is extremely booked up and this is the fastest way for me to begin my treatment. At this point, we are looking at approximately 6 months of chemo, given every 2 weeks. After this first treatment, it will be given as an outpatient at the cancer clinic. There is a chance it could be less or more, depending on how well my body responds and what a mid-point PET scan shows in terms of the cancer disappearing!!

I had a whole blood work up completed today and will also find out if a bone marrow biopsy is required. Since I am in an earlier stage of Hodgkins, and the cancer did not appear below my diaphragm, if my blood work continues to be in the normal ranges then I will hopefully not need a bone marrow biopsy!! Let's cross our fingers for that!! Eventually in the next few weeks, I will have a heart ultrasound and something called a MUGA scan, these will measure my heart functioning as one of the chemotherapy drugs can be hard on your heart and they want a baseline functioning record.

It was an overwhelming day, so much information to absorb. I tried to ask the questions that I had prepared but it seems like there are new ones all the time. I am keeping track of them and know that they will be answered. I was given a plethora of reading material that I will be reading over the course of the next few days/weeks.

I am grateful that the treatment is starting and that I have been told that Hodgkins is a completely cureable form of cancer. As many people have said, including the doctor today, if you have to have cancer this is one of the more preferable ones to get. Not that I always enjoy hearing that but it gives me positive information to focus on. It saddens me that I will need to be off work for an extended period of time. But in talking to one of my favourite colleagues today, "I don't have a choice." If I want to live, this is what I need to do. This pause in my life allows me to focus on healing myself, loving my family and friends and will no doubt change me and my outlook for the rest of my long life. Stay tuned!! I will update after the first treatment. While I am nervous about the side effects, those (while unpleasant annoyances) will be proof that the treatment is doing what it needs to do.

Thank you to my two best friends who took me out for lunch,  laughed with me and helped me process everything that I heard today. I love you both and don't know what I would do without you in my life. Thank you again to my Secret Bunnies at school. Your kindness leaves me without words.

Monday, April 14, 2014

Patience

"It's not the load that breaks you down, it's the way you carry it."

Time. Time between tests and appointments. Waiting. Waiting for phone calls and test results. Answers. Hearing words you know will come but waiting to know they are true. Relief. Knowing that there is someone struggling to accept a harder truth than what you face.

As we enjoyed time as a family this weekend celebrating our daughter's Champagne birthday, a milestone turning 14 on April 14, 2014. I marvelled at how she became this young woman in a blink of an eye. It was only yesterday that she was carrying her golly around, driving up and down the sidewalk in her cozy coupe, we were enjoying the bliss of three hour afternoon naps while I worked half time. Her routines of "flippies" with Daddy and dance routines on the driveway. How did all that time go by so quickly when it seems like the past few days and weeks seem so hard to get through. 

When? When will treatment start? When will I meet with the oncologist? How long will the treatment last? How long will I keep working? When will I start feeling better or worse? When will all the tests stop and the answers begin? Believe me, those are all questions I seek to find the answers to. And I may not get them all at once.

"Patience is not the ability to wait, but how you act while you're waiting."

I am grateful for the answers I have received. They are enough to keep me positive, give me hope and help me put one foot in front of the other. I am thankful for the joy and calmness I find in completing tasks at school, having short conversations with wonderful colleagues, kind words and smiles bestowed on me. Even if I don't always respond or stop for a chat, I know you are there. 

 I am putting my faith in the medical field that a solid plan is being built carefully for me with all the necessary information to put all the pieces together treat me. Waiting for a week for my appointment at the Cancer Centre has been extremely difficult, a load that I struggle at times to accept, made easier by so many friends and family. One truly does not realize how loved you are until you face something like this.

To my many Secret Bunnies at school, you made coming to work something I look forward to again tomorrow. For the beautiful flowers that arrived from two amazing gymnastics moms, even though we don't see each other often in our dropping off and crazy schedules, I know you are there for us and you provide a second home to Jordan. For our friends who invite us out for dinner, visits and treat us exactly the same, thank you for helping me realize there is more to our lives than illness. We need and yearn for normal.
  

Thursday, April 10, 2014

Answers

I received a call I didn't expect to receive today. I had resigned myself to more waiting and no answers. But Dr Hentschell called this morning! Jordan took the message while I was in the shower trying to clean up my biopsy site. I called back the number that showed on call display and realized he had called from St Mary's. I spoke to his secretary and she said right away when I called, "Did he call you?" To hear her concern and recognition of my need for an answer and some comfort with good news. She paged him to let him know I was home and he called back right away. There are people who come into your life for a reason and I have to believe that Dr. Hentschell was placed before me to guide me towards this diagnosis. Realizing my need for answers, he once again came through quickly with the information I so needed to hear.

The gallium scan showed that there is no signs of cancer below my diaphragm. This finding is so important in staging the cancer and that it is not in more advanced stages. The cancer has not reached the lymph nodes in my spleen, liver, abdomen or groin. I can't tell you how relieved I am. I have been living in fear that I would learn that the cancer had spread, I never thought I would be this relieved and could not wait to share this good news with my parents and family. The pathologist also had the full report of my lymph node biopsy. The biopsy completely confirmed a diagnosis of Hodgkins Nodular Sclerosis. So despite my discomfort, the lymph node excision was worth it and gave the doctors the confirmation that they needed to hear in order to move forward.

For now, I take each day as it comes. Recover from the biopsy surgery and gain my strength and be ready to face this head on. Today I am grateful for the strength, maturity and bravery of my children. I can't begin to describe how proud I am at the resiliency Cam and Jordan have shown in the past few weeks. We have been open, honest and shared all the information with them. They have surpassed and surprised me with their strength and their willingness to take on responsibilities, show independence and quietly embrace this news. Jordan is competing at the All Star Gymnastics Challenge in Brampton today knowing that her biggest fan is cheering her on and I know that my children are my biggest supporters and source of strength in this journey.

Wednesday, April 9, 2014

Lymph Node Biopsy Update

One more step forward. I arrived at St Mary's Hospital at the ungodly hour of 6:00 am. Once again, so fortunate to have such an up-to-date, beautiful facility at our doorstep. The nurses got me all set up and prepped for the surgery. The lymph node excision was uneventful as far as I can tell. I was at the hospital for about 6 hours in total. Much of the time was spent in recovery. I believe the procedure took around 1 hour 15 minutes to complete. My right under arm is pretty bandaged up and very sore. I am listening to the advice of the nurses and taking the pain medication as directed. It is definitely helping. Ice packs and a pillow under my arm are making me much more comfortable. The waiting continues. They don't expect the results of this biopsy to be available for at least a week. The reason for this biopsy is to confirm the type of lymphoma I have, namely Hodgkins Nodular Sclerosis which is what they are pretty confident it is. As well, I have not heard the results of the Gallium Scan. I am making an assumption based on telephone conversations that this is not likely to be shared with me over the phone. My next appointment is not until Thursday, April 17th at the Cancer Centre. I plan to call again to inquire about whether that appointment can be moved up at all. The waiting is the hardest. I am anxious to get things started. I know that we need all the pieces of this puzzle called my life in order to plan the treatment, I'm trying hard to remain positive and take each day as it comes. Luckily Jason is my sounding board,  he is my voice of reason. There are times where I let my anxiety get the best of me and worry about the what ifs, he brings me back to the now. I am grateful for his love for me today and everyday down the road.

Monday, April 7, 2014

The Importance of Communication

Today I was reminded of the importance of communication. This blog is a wonderful way for me to communicate to my loved ones. There will be days where I just don't have the time or energy to provide updates to everyone. The blog is a glimpse into my mind, a glimmer of my fears but a wide open picture to my thanks, gratitude and positive feelings of hope.

I have quickly realized the need for me to advocate for myself. It begins with the front line administrative staff at my doctor's offices. I made a call today to the secretary at Dr Hentschel's office. What a kind lady. I apologized for my emotions when we spoke on Thursday, I relayed to her my appreciation that we were able to re-arrange my appointments so I could attend Paul Chambers funeral. She was familiar with Paul and knew what a remarkable man he was.

She let me know that the gallium scan results had not been sent back yet but that Dr. Hentschel was on-call this week and could possibly have them by tonight and often makes calls after dinner. She also said that I have been booked to see both Dr. McCarron the Oncologist and Dr. Stevens a Hematologist on Thursday, April 17th at the Cancer Centre. They may possibly try to have me come in earlier but the biopsy results from tomorrow's surgery often take a week at least to arrive. Coordinating appointments to coincide with test results seems to be important. The onus I believe falls upon myself to ensure that all parties are communicating with each other as I learned last week when it was missed that I was having this biopsy. Communication is crucial, advocating and speaking up for what I need will be key. Building strong relationships will also allow me to be seen as a person and not another patient.

I give thanks today first to my parents. Seeing them this past weekend was something I needed to do. Having them live a bit farther away is harder for them I am sure than for me. But I always feel their presence. I am grateful for BBM in that I have constant communication with both of them when I just need to vent, share a bit of news or have them check in on me. I am relieved that they will be able to be here for part of this week to give some support to the kids and Jason. Thank you to my dear friend and colleague whom I had a lovely lunch with Sunday. Her gift to me was a cactus plant. This plant is meant to withstand hardship, rough elements, will grow anywhere and requires little maintenance and it will still survive. A metaphor that I will be able to stand tall and grow in all terrible circumstances.

I am also grateful to colleagues for their cards, gift cards for a meal and a beautiful outdoor plant that arrived on my doorstep.  Jason's parents for their meals, muffins, cookies, love for my kids and all while facing their own difficulties in life. Their unconditional love for us is incredible. My Aunt for her visit and strength she gives me. I wouldn't be able to get through some days without her. A kind Itinerant teacher who will be leading my reading group for three days this week so those students continue in their learning and to my husband, Jason who is the most incredible source of strength for me.

Friday, April 4, 2014

Survivor

"You never know how strong you are until being strong is the only choice you have."

Survivor is one of our families favourite shows. Often we are not able to watch on Wednesdays, but we gather around the tv together when we find the time and catch up on episodes. I always marvel at the immunity challenges where the competitors have to stand on a small pole for hours, or balance something without moving or dropping it. You can see in their faces when they show how much time has lasped that they are using all of their strength to hold on and be the last one standing. That is much of how I felt today.

A gallium scan is a test of strength, patience and one's ability to breath through it and make it until the end. I am thankful that it is broken up into two parts. The first part seemed long enough. 22 minutes lying on your back, not being able to move at all, with a flat table over your face about an inch away from your nose. You go through the machine so it scans your whole body, moving every so slightly until you reach your feet. I took a little longer because I'm fairly tall. After a quick break, the real true Survivor test came.

Not only was I lying on a very narrow table on my back,  in a hospital gown. I had to place my arms over my head with my wrists crossed, they used a piece of tape to hold my feet together. Somehow I imagined myself in this position in more of a Fifty Shades of Grey scenario than a scanning machine... Not so much. I closed my eyes as the camera circled around my body in 40 second intervals, I imagined those Survivor contestants holding out for immunity, their muscles screaming at them like mine were. At around 30 minutes, the technician told me what a great job I was doing. Only 10 more minutes. Are you kidding me? Somehow I breathed through it, my eyes needed to be closed for the last part where a CT machine also took pictures. It was hard not to feel a bit of panic. Then I also imagined the many other people who have gone through this test before me, sicker than I am, older and not as strong as I am - they made it through, I will too.

The end point, my prize for holding strong until the end, not moving and damaging the scans is the ability to see inside my body and determine where the cancerous cells are. Have they travelled past my diaphragm putting me into a more advanced stage of cancer? The results will arrive to my doctor by Monday.

I received a call that I have a referral to an oncologist, I am grateful of the compassion of several professionals who understood the importance of attending Paul's service combined with the reality that seeing the oncologist would be more productive when they had the results of the gallium scan and the biopsy that I have on Tuesday. We are hoping to hear that I have an appointment with Dr. Bonnie McCarron at the Cancer Centre on Thursday, April 10.

Once again, I need to express our extreme and humble gratitude to Jordan's gymnastics training centre, Revolution Gymnastics. The kindness of the owners extended to our family leaves me without words. I take comfort in knowing the support and love that Jordan will receive from her gymnastics family. I look forward to my parents visiting this weekend. The troops are rallied, the fight is near. We could not do it without all of you. xoxo