After writing the most recent post this morning I realized that I had wanted to try to express some of my frustrations around communication. Since I myself find it difficult to articulate how I am feeling hour to hour, day to day with so many conflicting emotions and thoughts, I have to wonder how it is for those close to me. I suspect there has to be some "breast cancer fatigue" given that this has been going on for so long. I am certainly caught up in it and though I am assured that a few years down the road, much of this will be distant memory, this is not the case for now.
I have tried to write some of the myriad of thoughts down and it does help to post on this blog too, if only to force myself to make some sense of what goes through my mind most often. I am often short tempered and when I try to understand why, I sometimes think that I do not want to be asked yet one more time how I am. What am I to say? If I actually am in pain, I feel sick, I am not coping well, what will be the response? What can anyone really do about it? Of course everyone is concerned but there is a limit on what is helpful. Of course I appreciate the concern of my friends but I just get so tired of the constant reminder that I am not part of "normal" anymore; at least what was my old normal~~that is gone forever. Often I would just like to retire off to some hermitage for the duration. But of course that is not going to happen.
Next week I have 6 different appointments and the following week I will start radiation which means I will go daily, Monday to Friday for several weeks. I will hope that my reconstruction will not break down, this possibility being in the range of 40%. "The Intelligent Patient Guide to Breast Cancer," given to us at the beginning of our breast cancer treatments, says 50% but my wonderful plastic surgeon says 40%. I will go with his numbers!
But at the end of radiation, treatments will come to an end, barring the exchange surgery months down the road. Maybe by late spring, I will feel that I can in fact say that there is "no evidence of disease" which is the closest thing to cured as we get.
Meanwhile I hope that I do not alienate my friends and my family as I struggle to weave my way through my emotions and come out on the other side a better person. I know how lucky I am to have so many people rooting for me all over the world and though it may not always seem that I appreciate it, please know that I do. It is not always so easy to show. And I often feel guilty for not showing or voicing my appreciation.
But I definitely appreciate your thoughts and words whether by email, cards, Facebook postings or the occasional phone call. There should be a "new me" to face by summer!
Tuesday, March 19, 2013
8 months and counting....
Eight months ago yesterday I found the lump that was breast cancer. Two weeks ago today I had a second surgery, the first having been a lumpectomy and sentinel node biopsy last September. This time I had a total mastectomy, axillary dissection and immediate reconstruction with a tissue expander. A week from now I will have CT simulation for a 6 week course of radiation which is supposed to start in two weeks.
I find it hard to believe that radiation will start so soon~~it seems to be that healing from surgery has barely begun. Yet I sense the urgency to begin from both my medical and radiation oncologists. Chemotherapy ended January 28 so it will be 9 weeks since I had that protection for recurrence, the big scary word that is always there. I am often reminded that even in the first surgery, 6 out of 8 lymph nodes removed proved to be positive and I was found to have extensive lymphovascular invasion. So yes, I guess the sooner we start radiation the better.
But then I read about radiation and its range of possible side effects and my fears gather again and threaten to overwhelm me. I have had surgery, chemotherapy, more surgery and last week started to take a drug called Anastrozole that I will take daily for 5 years~~another treatment to ward off recurrence. It has its own list of side effects, the worst being osteoporosis and fractures. On a more humorous note, at least now that it has passed, I neglected to read up on the more immediate and common side effects, number one being nausea. So the first day I took the drug and also my third day post op, I was surprised by sudden nausea and vomiting. Aha, there it was on page one!
Two weeks post op and I am again walking my usual 5 kilometre route to the Fraser River and back. This I have been doing the past few days with my good friends who continue to offer support. In fact, I still have loads of support from family and friends. They praise my ability to recover so quickly and are happy and willing to do anything I might ask.
But my reality is one of daily awareness that I have breast cancer with a high chance of recurrence. I am still in the midst of the aggressive treatments required to stop or at least control it. As I enter month 9, I feel that for much of each day and night, I am alone with this awareness. It is very hard to understand this state of being unless one has had breast cancer or perhaps some other sort of aggressive cancer that has taken over one's life. I may appear to be handling it well, physically and may sound cheerful but so often it is more of a reflex; a need to have some control over how I appear.
I am thankful for breastcancer.org, an online forum which provides "virtual friends" who are going through so many of the same things at the same time. Books and doctors only tell us so much. Connecting with my breast cancer buddies 24/7 means constant reassurance and often real hope for the future.
And so another day starts. Awake at 0400, up at 0500 and at 0730 my son Andy has just appeared to start Triathlon #43 for the year. He continues to do these marathons in support of "Right to Play," and has so far raised $1350. His continued commitment will no doubt provide much needed funds for poor and underprivileged kids in many third world countries. He does make me feel proud and inspired and is one of my own greatest supporters. Though he has not updated his page on the Right to Play website recently, this is the link: http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565
I find it hard to believe that radiation will start so soon~~it seems to be that healing from surgery has barely begun. Yet I sense the urgency to begin from both my medical and radiation oncologists. Chemotherapy ended January 28 so it will be 9 weeks since I had that protection for recurrence, the big scary word that is always there. I am often reminded that even in the first surgery, 6 out of 8 lymph nodes removed proved to be positive and I was found to have extensive lymphovascular invasion. So yes, I guess the sooner we start radiation the better.
But then I read about radiation and its range of possible side effects and my fears gather again and threaten to overwhelm me. I have had surgery, chemotherapy, more surgery and last week started to take a drug called Anastrozole that I will take daily for 5 years~~another treatment to ward off recurrence. It has its own list of side effects, the worst being osteoporosis and fractures. On a more humorous note, at least now that it has passed, I neglected to read up on the more immediate and common side effects, number one being nausea. So the first day I took the drug and also my third day post op, I was surprised by sudden nausea and vomiting. Aha, there it was on page one!
Two weeks post op and I am again walking my usual 5 kilometre route to the Fraser River and back. This I have been doing the past few days with my good friends who continue to offer support. In fact, I still have loads of support from family and friends. They praise my ability to recover so quickly and are happy and willing to do anything I might ask.
But my reality is one of daily awareness that I have breast cancer with a high chance of recurrence. I am still in the midst of the aggressive treatments required to stop or at least control it. As I enter month 9, I feel that for much of each day and night, I am alone with this awareness. It is very hard to understand this state of being unless one has had breast cancer or perhaps some other sort of aggressive cancer that has taken over one's life. I may appear to be handling it well, physically and may sound cheerful but so often it is more of a reflex; a need to have some control over how I appear.
I am thankful for breastcancer.org, an online forum which provides "virtual friends" who are going through so many of the same things at the same time. Books and doctors only tell us so much. Connecting with my breast cancer buddies 24/7 means constant reassurance and often real hope for the future.
And so another day starts. Awake at 0400, up at 0500 and at 0730 my son Andy has just appeared to start Triathlon #43 for the year. He continues to do these marathons in support of "Right to Play," and has so far raised $1350. His continued commitment will no doubt provide much needed funds for poor and underprivileged kids in many third world countries. He does make me feel proud and inspired and is one of my own greatest supporters. Though he has not updated his page on the Right to Play website recently, this is the link: http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565
Subscribe to:
Posts (Atom)