"We cannot direct the wind but we can adjust the sails."
Today has been a day where I have been both embracing and overcoming anger. I am adjusting my sails as I am learning that I cannot control the direction that this journey will take me. It's hard not to let frustration, anger over this happening to me and anxiety to "get going" take over.
After a quick appointment for the gallium injection at St Mary's, I met with the surgeon who will be doing the lymph node biopsy. Once again, what you expect when you go to the appointment turns out very differently from the story you painted in your head for yourself. I have said several times, I have been nothing but grateful and impressed with the efficiency of the specialists in booking appointments for me and communicating results. It has been done in the most caring and expedient of ways.
I will be having a lymph node biopsy of a node in my right armpit, the whole lymph node will be removed on Tuesday, April 8 during day surgery. This is the safest procedure with the fewest risks. Removing a lymph node from my neck or collarbone regions carry risks of damaging nerves connected to my spinal cord area. While I am thinking general anesthetic is not a bad way to go for this, it involves a more lengthy recovery and pushed the surgery to next week. Looking for the silver cloud, as I continue to try to do. It allows me three uninterrupted days of work this week and am opportunity to celebrate the life of a loved one.
So the waiting period continues, allowing me to live a semblance of "normal life" as I know it now. Thank you to my oldest friend who came this weekend for a much needed visit and a basket of my favourite things. What a joy to have a friend who knows you so well that she can choose a variety of items that comfort me, inspire me and give me hope. Thank you M#1.
Monday, March 31, 2014
Saturday, March 29, 2014
Busy Week Ahead
Monday, March 31 I head to St Mary's Hospital for the first part of the Gallium scan. It should take around 2 hours. Then that afternoon I meet with Dr. Mark Maurice who will be the Surgeon working with Dr. Hentschel to biopsy one of my lymph nodes. I hoping that the funeral arrangements for Paul and the upcoming surgery can fit with each other so I can take care of my need for goodbye and the need to keep the forward motion with a final diagnosis. Friday, April 4, I return to St Mary's for the follow up Gallium Scan. I hope to hear of the Oncologist referral early next week as well. It will be calming for me to finally have the doctor who will be driving my ship to recovery. I can only hope that he/she will be as fantastic as Dr. Hentschel in managing my fears and communicating the needed information.
I am continuing to work on the days I don't have appointments as I feel well enough to do so and it allows me an escape. I am trying to work ahead and accomplish tasks that I know need to be completed down the road. I can't thank my colleagues and administration enough. Somehow they have all managed to embrace me while at the same time, allow me a sense of normal. Well-placed hugs and visits to my room give me the love I need while in front of the children, I am able to carry on with meeting the needs of students with such professional caring people. Thank you for the help I have received in planning Kindergarten lessons, covering a bus duty or providing a needed break throughout the day. It has not gone unnoticed. You are truly the greatest staff in the universe!
I am continuing to work on the days I don't have appointments as I feel well enough to do so and it allows me an escape. I am trying to work ahead and accomplish tasks that I know need to be completed down the road. I can't thank my colleagues and administration enough. Somehow they have all managed to embrace me while at the same time, allow me a sense of normal. Well-placed hugs and visits to my room give me the love I need while in front of the children, I am able to carry on with meeting the needs of students with such professional caring people. Thank you for the help I have received in planning Kindergarten lessons, covering a bus duty or providing a needed break throughout the day. It has not gone unnoticed. You are truly the greatest staff in the universe!
A Timely Celebration of Life
I received a phone call on Friday, March 28, 2014 that you know will one day come but you never really think it's going to happen. My close friend and mentor, former principal at Courtland Paul Chambers passed away after a 5 year valiant struggle with ALS. He approached his diagnosis of ALS with such strength, bravery and humour, always making sure that his loved ones were going to be taken care of, and have memories of him. It was important to him that during his time left with us that he would take advantage of every moment. His home was filled with the most amazing circle of friends and family. As his mobility and health declined, he embraced his new normal, using his i-pad to communicate and somehow always make us laugh. An image I will always remember is the thumbs up sign he would give to let us know he agreed, or was doing ok.
While Paul was my Principal, I learned something new everyday from him. How to listen when a parent is screaming on the other end of the phone, never letting the kids see you rattled, playing by his own rules, doing what works for the kids, supporting staff. He understood people. In watching Paul handle his ALS diagnosis, there is much to be learned for me as I begin my journey. As Paul had to adjust to the changes ALS would bring to his life, knowing that there would be moments in his children's lives down the road that he would inevitably miss. He made certain that they knew how he felt and he could be counted on for straight forward advice. I received an email from him on Tuesday this week and while he was shocked at my recent diagnosis. His large font email from the i-pad carried a message. You are strong, you have this, you will be ok. While I am regretful that my visit with him this weekend, did not take place. I take comfort in knowing that there was no doubt in his mind that he made a difference in my life, and the lives of so many.
His positive attitude and mindset that he could continue to persevere and defy the odds stacked against him place him once again in the role of my mentor. I will have considerable opportunity to reflect on the things I have learned and will continue to learn from Paul. I take comfort in knowing that he will continue to watch over me. It is my hope that he has made the realization that there is a wonderful place in heaven for him and that he has finally found peace without suffering.
While Paul was my Principal, I learned something new everyday from him. How to listen when a parent is screaming on the other end of the phone, never letting the kids see you rattled, playing by his own rules, doing what works for the kids, supporting staff. He understood people. In watching Paul handle his ALS diagnosis, there is much to be learned for me as I begin my journey. As Paul had to adjust to the changes ALS would bring to his life, knowing that there would be moments in his children's lives down the road that he would inevitably miss. He made certain that they knew how he felt and he could be counted on for straight forward advice. I received an email from him on Tuesday this week and while he was shocked at my recent diagnosis. His large font email from the i-pad carried a message. You are strong, you have this, you will be ok. While I am regretful that my visit with him this weekend, did not take place. I take comfort in knowing that there was no doubt in his mind that he made a difference in my life, and the lives of so many.
His positive attitude and mindset that he could continue to persevere and defy the odds stacked against him place him once again in the role of my mentor. I will have considerable opportunity to reflect on the things I have learned and will continue to learn from Paul. I take comfort in knowing that he will continue to watch over me. It is my hope that he has made the realization that there is a wonderful place in heaven for him and that he has finally found peace without suffering.
Thursday, March 27, 2014
In medicine they need 100%
I received a call from the Dr Hentschel today with the results of my biopsy on Monday. I was not expecting this call so soon. I am so thankful and impressed that we have such amazing doctors and professionals right here in Kitchener.
The pathologist and another lymphoma specialist both reviewed the results of the biopsy. It is confirmed that I have Hodgkins Lymphoma. They are "pretty sure", 97% certain but not 100% certain that I have a form of Hodgkins called Nodular Sclerosis. In doing some research, I have learned that this is the most common form of Hodgkins. Between 60-80% of all Hodgkins cases are this kind. In early stages, it is very treatable with a high prognosis rate. Even in more advanced cases, the prognosis is very good.
Unfortunately in medicine, they need 100% diagnosis and confirmation of the type of Hodgkins in order to plan my treatment. In order to do this, I will need to see a surgeon early next week to have a excisional lymph node biopsy, Dr Hentschel is hoping that the surgeon will be able to remove one of the enlarged lymph nodes in my neck/collarbone area. I will also need to have a Gallium scan. A second appointment. This will involve some sort of radiology dye that travels to the cancer in my body, in order to stage the cancer they need to determine whether the lymph nodes below my diaphragm are involved.
Dr Hentschel has made the referral to an Oncologist and I will see this new doctor next week as well. It will be busy week but all of these appointments will lead me closer to the start of the treatment part of my journey. The diagnostic phase while seemingly long, is a very important one. They want to get it right. I want them to get it right. There is nothing about my health that I want to second guess.
This call is one I have anticipated and waited for. Dr. Hentschel was patient, answering all of my questions with the right amount of kindness, humour and knowledge. I firmly believe he is a large part of the quick turn-around time in getting me results and ultimate answers. I thank him for that.
I take a tiny amount of solace in knowing that if the diagnosis turns out to be this form of Hodgkins that many others have walked this journey and are survivors. This being the most common form of Hodgkins means there are many treatments available, others out there like me who have made it to the other side. I am hoping that it is the "best case scenario" out of the worst thing that has happened to me in my life so far.
Thank you to our family, our friends, the colleagues who have taken on small responsibilities to make my life easier, the friends who have stopped by, the cards, offers and prayers. Every little bit helps lighten our load and make this a little less unbearable.
The pathologist and another lymphoma specialist both reviewed the results of the biopsy. It is confirmed that I have Hodgkins Lymphoma. They are "pretty sure", 97% certain but not 100% certain that I have a form of Hodgkins called Nodular Sclerosis. In doing some research, I have learned that this is the most common form of Hodgkins. Between 60-80% of all Hodgkins cases are this kind. In early stages, it is very treatable with a high prognosis rate. Even in more advanced cases, the prognosis is very good.
Unfortunately in medicine, they need 100% diagnosis and confirmation of the type of Hodgkins in order to plan my treatment. In order to do this, I will need to see a surgeon early next week to have a excisional lymph node biopsy, Dr Hentschel is hoping that the surgeon will be able to remove one of the enlarged lymph nodes in my neck/collarbone area. I will also need to have a Gallium scan. A second appointment. This will involve some sort of radiology dye that travels to the cancer in my body, in order to stage the cancer they need to determine whether the lymph nodes below my diaphragm are involved.
Dr Hentschel has made the referral to an Oncologist and I will see this new doctor next week as well. It will be busy week but all of these appointments will lead me closer to the start of the treatment part of my journey. The diagnostic phase while seemingly long, is a very important one. They want to get it right. I want them to get it right. There is nothing about my health that I want to second guess.
This call is one I have anticipated and waited for. Dr. Hentschel was patient, answering all of my questions with the right amount of kindness, humour and knowledge. I firmly believe he is a large part of the quick turn-around time in getting me results and ultimate answers. I thank him for that.
I take a tiny amount of solace in knowing that if the diagnosis turns out to be this form of Hodgkins that many others have walked this journey and are survivors. This being the most common form of Hodgkins means there are many treatments available, others out there like me who have made it to the other side. I am hoping that it is the "best case scenario" out of the worst thing that has happened to me in my life so far.
Thank you to our family, our friends, the colleagues who have taken on small responsibilities to make my life easier, the friends who have stopped by, the cards, offers and prayers. Every little bit helps lighten our load and make this a little less unbearable.
Tuesday, March 25, 2014
Comfortable?
I had a friend comment to me that she hoped that I wasn't becoming "comfortable with cancer". I felt compelled to respond not to her, but to me. I have been turning around what this means in my head. I can definitely say I am NOT comfortable with a cancer diagnosis. What I do feel that I have needed to do over the past week since hearing from two different specialists, a virtual certainty that I had a form of lymphoma is begin to form an acceptance in my mind. An acceptance of the journey ahead, what's to come, a reality. My first response was understandably, denial, sadness, disbelief and devestation. These emotions are not going to help me fight. I soon realized that the sooner, I progressed to acceptance, the sooner I could begin to build a strength that will help me face this hurdle and overcome. There is nothing comfortable about what I am facing. I fully intend to make my probable cancer an enemy in my body, not welcome to stay, soon to be vacated. It will be a fight. I am ready for it.
Monday, March 24, 2014
Sometimes ignorance is bliss
I am thankful that the core needle biopsy is over. They definitely say "Ignorance is bliss" well I am glad I didn't really know what I was up against before I was wheeled in. To say unpleasant and uncomfortable would be an understatement. I am thankful that there was a drape so that I did not have to witness the procedure. The radiologist was able to take 9 samples. Of those samples there were 3-4 that I was told were textbook, perfect samples. That is what we want so that the pathologist is able to do all the tests necessary to begin a diagnosis of what form of Lymphoma we are dealing with.
I once again praise the calm, caring, funny nursing staff who made my stay not only bearable but comforting. I am now at home on bed rest for the next 24 hours. I do need to stay lying down in order to let my lung heal as it is punctured when the needle biopsy goes through to sample the mass. This tiny hole repairs itself on its own but I am not supposed to bend over, carry things, lean over and must sleep on my back. There are small risks but all tests done afterward (CT scan and chest x-ray) showed that everything look fine. Even with a "rush" on the results, I am told it will be 5-7 days. But at least in my mind, I hope that the scariest part is over. I have had time to process and realize that this is happening and that I very likely, have cancer. The next part is...praying that it is a form of lymphoma that responds well to treatment and has a cure. I am not prepared to hear anything otherwise.
Until then, we so appreciate your prayers, kind words, love and support. If I don't respond to all of you, it is only because I am choosing to take care of me and my family. I know you are there. I can feel your support, holding me up and shining light down on us.
I once again praise the calm, caring, funny nursing staff who made my stay not only bearable but comforting. I am now at home on bed rest for the next 24 hours. I do need to stay lying down in order to let my lung heal as it is punctured when the needle biopsy goes through to sample the mass. This tiny hole repairs itself on its own but I am not supposed to bend over, carry things, lean over and must sleep on my back. There are small risks but all tests done afterward (CT scan and chest x-ray) showed that everything look fine. Even with a "rush" on the results, I am told it will be 5-7 days. But at least in my mind, I hope that the scariest part is over. I have had time to process and realize that this is happening and that I very likely, have cancer. The next part is...praying that it is a form of lymphoma that responds well to treatment and has a cure. I am not prepared to hear anything otherwise.
Until then, we so appreciate your prayers, kind words, love and support. If I don't respond to all of you, it is only because I am choosing to take care of me and my family. I know you are there. I can feel your support, holding me up and shining light down on us.
Sunday, March 23, 2014
Having my Back
I received a card from someone who very quickly has become an influential and important person in my life. There are definitely people who come into our lives for a reason. She is one of them.
Her message, "I admire you so much and am right there behind you. Remember when you used to sit back to back with a friend as a kid, whenever you need it, visualize me sitting there right behind your back."
There are so many friends who have my back. Thank you. You know who you are.
Her message, "I admire you so much and am right there behind you. Remember when you used to sit back to back with a friend as a kid, whenever you need it, visualize me sitting there right behind your back."
There are so many friends who have my back. Thank you. You know who you are.
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