Sunday, November 16, 2014
Results and What Lies Ahead - Sept 25, 2014
Last Friday was a pivotal visit with my oncologist. She officially declared me done with chemo! My white blood counts have recovered enough that I can travel again, yeah! She also gave the ok to have my final reconstruction surgery, which is scheduled for mid-October. Oddly enough, she said I'm not recovered enough for a flu shot or any other immunizations right now (good thing we went to South Africa last year!)
There were other parts of my visit that were a little more sobering. She asked about my chemo side effects and how I have been feeling. I shared that I've still been having a lot of muscle pain. I feel like I have lost my physical strength and have more fatigue now, after 3 weeks, than I had with any of the previous cycles. Even simple activities seem to tire me very quickly, I'm just not feeling like myself yet.
She leaned over and gently said -"That's all the cumulative effects of the chemo you have been through. I hate to have to break this to you, but you won't fully feel like yourself for at least a year. It will take you that long for your body to recover from all the damage done by the chemo."
Although I appreciated her honesty and tenderness, it was such a hard message to hear. I tried to be realistic and brave, to keep my focus on the information, but my emotions took over and the tears came quickly. I had read a lot about chemo and knew it would take time to heal, but when she said 'at least a year', I felt so disappointed. It's been so hard to go through all the treatments and I just want to be normal again. I don't want to wait another year to feel good again.
After she let me have a moment to pull myself back together, we talked about my longer term treatment. Since my cancer is high grade, there is a high risk for recurrence, even though it was caught early. That is why I had to go through chemo, and why I will need to take medications for the next 5-10 years. Fortunately, my cancer is ER+, which means that a class of drugs called aromatase inhibitors are very effective at preventing any remaining cancer cells from growing in my body and coming back somewhere else.
My doctor likes to be aggressive, so her plan is to start with the drug with the highest efficacy and see if I can tolerate it. If not, we will work down the list of other options. She walked through the side effects from this drug, that I need to watch for initially; muscle pain, fatigue, dizziness, hot flashes. Of course, I already have all those symptoms from chemo, so I'm not sure I would even notice.
Longer term, theses drugs block as much estrogen as possible in your system, so they have the effect of magnifying the worst symptoms of menopause; bone problems, weight gain, skin aging and dryness, and even heart problems. So, in addition to monitoring my cancer, I will be seeing my oncologist and/or primary care doctor every 3-4 months to make sure the drugs preventing cancer recurrence are not creating other serious health problems.
I have been very healthy my whole life. I have been consistent about annual checkups, regular exercise, healthy eating. As I look out over the next five years, it's hard not to feel overwhelmed by the meds, the tests, the doctor visits, the risks and even the financial impact all this could have on my life in the longer term. It's easy to let fear and worry, about all that could go wrong, all that could happen, creep into my thoughts.
So, I pause... I breathe, I quietly remind myself that I can do this... if I just take it one day at a time. I can't know what the future may hold, I only have today.
Rehab - Nov 4, 2014
Today I spent the better part of the day in rehab. No, I have not suddenly developed a drinking or drug problem. I'm talking cancer rehab. I went in expecting another round of physical therapy and came out with a whole new perspective on cancer recovery.
I was referred to rehab and a new doctor by my oncologist, because of my fatigue issues and desire to regain the physical strength I've lost over the last five months. What I didn't understand before today, is that there is a whole specialty field in medicine to help cancer patients recovery - physically, emotionally and cognitively - from the damage done by cancer treatments.
Dr. Zucker, an onco-physiastrist, (not psychiatrist) explained that unlike other medical treatments, cancer treatments generally take someone who felt healthy and makes them very sick. It's a different impact than having an injury fixed, and this rehab is designed to return the patient to pre-cancer health.
The process included a long series of questions and tests to inventory my health level and physical health prior to cancer, and evaluate where I am now. As my oncologist told me, complete recovery will take me about a year from my original surgery. Rehab will help me plan, pace and manage that process. The goal is to build stamina and strength at a sustainable pace so that I don't create new problems or actually slow down recovery.
Dr Zucker was pleased with my overall fitness, my range of motion, and my commitment to walking. He was concerned about my current level of pain, my sleep issues, and my quick return to work from the latest surgery. He is a big fan of rest and pace, so the stress of returning to a full time job before I am completely healed from surgery did not get his approval. He thinks I should be taking 10-15 minute rest breaks at least every 2 hours. Very hard to do with heavy schedules at work.
Solving the pain and sleep issues was the top priority, so that will be the focus for the next two weeks. The doctor changed a couple of meds to help with both. His hypothesis is that I have some nerves that are still overreacting after surgery, rather than any real underlying physical problem. In addition, he gave me some stretches and simple exercises that may help.
Hopefully cancer rehab will help me get through both these short-term discomforts and also start me on the path to long term health - physically, mentally, emotionally. It was really good to have a doctor who looks at the whole process, and the whole person, for cancer recovery. Who knew?
I was referred to rehab and a new doctor by my oncologist, because of my fatigue issues and desire to regain the physical strength I've lost over the last five months. What I didn't understand before today, is that there is a whole specialty field in medicine to help cancer patients recovery - physically, emotionally and cognitively - from the damage done by cancer treatments.
Dr. Zucker, an onco-physiastrist, (not psychiatrist) explained that unlike other medical treatments, cancer treatments generally take someone who felt healthy and makes them very sick. It's a different impact than having an injury fixed, and this rehab is designed to return the patient to pre-cancer health.
The process included a long series of questions and tests to inventory my health level and physical health prior to cancer, and evaluate where I am now. As my oncologist told me, complete recovery will take me about a year from my original surgery. Rehab will help me plan, pace and manage that process. The goal is to build stamina and strength at a sustainable pace so that I don't create new problems or actually slow down recovery.
Dr Zucker was pleased with my overall fitness, my range of motion, and my commitment to walking. He was concerned about my current level of pain, my sleep issues, and my quick return to work from the latest surgery. He is a big fan of rest and pace, so the stress of returning to a full time job before I am completely healed from surgery did not get his approval. He thinks I should be taking 10-15 minute rest breaks at least every 2 hours. Very hard to do with heavy schedules at work.
Solving the pain and sleep issues was the top priority, so that will be the focus for the next two weeks. The doctor changed a couple of meds to help with both. His hypothesis is that I have some nerves that are still overreacting after surgery, rather than any real underlying physical problem. In addition, he gave me some stretches and simple exercises that may help.
Hopefully cancer rehab will help me get through both these short-term discomforts and also start me on the path to long term health - physically, mentally, emotionally. It was really good to have a doctor who looks at the whole process, and the whole person, for cancer recovery. Who knew?
Trip Hazards - Nov 1, 2014
I started back to the office on Wednesday, after a couple of days this week calling into meetings. Even though I was still feeling sore and tired, I have learned that the way to regain my strength and stamina is to return to normal activities - at least for short stints. So Wednesday I went in for about 5 hours. I was especially careful not to lift or carry anything, but the foundation has large and heavy doors that I should not be pulling open. I had to ask for help and did my best to let others do the lifting and pulling for me.
By early afternoon, I was feeling pretty tired and losing focus. About 2 pm I decided it was time to head home. As I have mentioned in previous posts, I walk about 2 miles each way to commute on the ferry. I've continued this through my whole cancer treatment and recovery. So I headed out Wednesday afternoon, in a slight drizzle, to walk my way to the ferry.
What has changed recently, is the trip hazards on this 2 mile journey. Between construction around the Seattle Center, construction on the waterfront, wet fall leaves, rain and darker afternoons, it's become a pretty dangerous adventure to get to and from the ferry each day. Being extra tired, that first day back at work, I managed to catch the edge of a construction barricade and fell into the street right under the monorail.
Since it was a construction zone, there wasn't any traffic coming at me, so I laid there for a moment to assess whether I had hurt anything seriously (other the my pride). My knee was skinned and I tore through my pants where I hit. My hands hurt but I had tried not to catch myself with them in fear of ruining my reconstructed breast. A man walking nearby stopped and asked me if I was ok, and I decided I was.
Much like this cancer process, I was a little beat up, shed a few tears, but picked myself up and brushed off the dirt. Then I held up my head and headed on my way, undeterred and feeling sure that I can handle the trip hazards in front of me - whatever journey I face each day.
By early afternoon, I was feeling pretty tired and losing focus. About 2 pm I decided it was time to head home. As I have mentioned in previous posts, I walk about 2 miles each way to commute on the ferry. I've continued this through my whole cancer treatment and recovery. So I headed out Wednesday afternoon, in a slight drizzle, to walk my way to the ferry.
What has changed recently, is the trip hazards on this 2 mile journey. Between construction around the Seattle Center, construction on the waterfront, wet fall leaves, rain and darker afternoons, it's become a pretty dangerous adventure to get to and from the ferry each day. Being extra tired, that first day back at work, I managed to catch the edge of a construction barricade and fell into the street right under the monorail.
Since it was a construction zone, there wasn't any traffic coming at me, so I laid there for a moment to assess whether I had hurt anything seriously (other the my pride). My knee was skinned and I tore through my pants where I hit. My hands hurt but I had tried not to catch myself with them in fear of ruining my reconstructed breast. A man walking nearby stopped and asked me if I was ok, and I decided I was.
Much like this cancer process, I was a little beat up, shed a few tears, but picked myself up and brushed off the dirt. Then I held up my head and headed on my way, undeterred and feeling sure that I can handle the trip hazards in front of me - whatever journey I face each day.
10 Days Out - Oct 27, 2014
It's been 10 days since reconstruction surgery! I was expecting to feel a lot better by now, but also appreciate what has improved. Last Friday was my follow-up appointment with my surgeon. She took off the mummy bandages and removed the dreaded drain. Without the bandages, I can breathe again when I move. Without the drain, I can SHOWER!! No more sponge baths!!
They were able to take out a few stitches, but had to leave most of them in place. The incisions were still not healed enough to take them all out, which means I still need to be very cautious about moving my arms - no reaching overhead or pushing/pulling anything! I won't be able to carry things or lift until after another 3 weeks. That makes my commute to work a bit challenging. My plan is to return to work this Wednesday, on a limited schedule.
The pain level continues to be challenging. During the day it is manageable, as long as I limit my activity. Too much movement, walking, even working at my computer and the muscles and tissue that were hurt during surgery get very angry. At night, when trying to sleep, everything seems to hurt. I'm not sure if it's only the surgery or also the long term cancer meds, but it is making sleep very challenging. I need lots of sleep to heal, but sleep is difficult with pain. I have been fortunate that I have been able to work from home, which allows me to sleep longer in the mornings.
The cumulative effect of surgeries, chemo and all the meds seems to be making this recovery slower than expected. I know that a year from now, these few weeks will seem like a short phase of this whole cancer process, but right now I just want it to be over.
As I lay awake, hoping for sleep, I question my choice for this surgery, again. Reconstruction, after all, is elective. I could have been done with surgery by now if I had made different choices. Although I look "normal" again, I don't yet feel normal, or even without pain. I need some time and space from this before I will know for sure whether this was the best choice for me. What I do know is that this is both very personal and much harder than I ever imagined. 10 days out is too soon to know, how I will feel longer term. I do know that I have more empathy and respect than I did before for people who choose to forgo reconstruction, for those who do it, and everything in between. This is hard stuff, no matter what we choose.
The Work of Healing - Oct 20, 2014
Today is the forth day since my final surgery. It's been a day of feeling better, and feeling worse. I feel like I have been run over by a truck, with stiches, scars and bruises covering most of my upper body. Because I elected to do reconstruction, which included some cosmetic work for "symmetry" on my left breast, I am bandaged from my shoulders to the bottom of my rib cage. There is a drain to expel any fluid that may build up in my chest. Finally, there are very colorful bruises across my stomach where they took some fat (an extra bonus) to smooth around the implant and fill some hollow spaces that were left from the removal of breast tissue from my cancer surgery. It is not a pretty sight, but with all the bandages and wraps I won't really see what it all looks like until this Friday when the dressings are changed and the drain is removed.
In the meantime, I am busy with the healing process. For this phase, that means drinking lots of fluids, getting lots of rest, limiting my activity (no lifting, driving, physical work, or exercise) and managing a variety of medications. I am taking antibiotics to prevent any possible infections, pain medications, and my regular list of ongoing cancer meds. Of course, with a variety of meds there are a variety of side-effects to manage and even some meds to manage the side effects. Fortunately, most of these will wind down over the next week and I can get back to my new normal post-cancer routine.
What I have learned from this latest surgery is just how important it is to stay as healthy as possible, and not to ever take my health for granted. Coming off cancer treatments, I had returned to a regular walking routine and have been improving my eating habits. Every doctor and nurse that I talked with, before and after surgery, told me that my recovery will be faster because of my walking routine. As much as my body hurts from this surgery, I am anxious to be back to my twice daily walk as soon as I can. I am giving myself time to rest and recover, but staying active and fit is more important to me than ever. Having seen the way it has helped me through the many phases of my cancer treatments, I am going to make sure I keep a priority in my life to focus on staying healthy. It's too easy to let work and other obligations get in the way of exercise, rest, reflection, healthy eating. What I know for sure, after these last five months, is that I need to make time - everyday - to take care of my self. The work of healing, and of staying healthy, is the most important job I have.
In the meantime, I am busy with the healing process. For this phase, that means drinking lots of fluids, getting lots of rest, limiting my activity (no lifting, driving, physical work, or exercise) and managing a variety of medications. I am taking antibiotics to prevent any possible infections, pain medications, and my regular list of ongoing cancer meds. Of course, with a variety of meds there are a variety of side-effects to manage and even some meds to manage the side effects. Fortunately, most of these will wind down over the next week and I can get back to my new normal post-cancer routine.
What I have learned from this latest surgery is just how important it is to stay as healthy as possible, and not to ever take my health for granted. Coming off cancer treatments, I had returned to a regular walking routine and have been improving my eating habits. Every doctor and nurse that I talked with, before and after surgery, told me that my recovery will be faster because of my walking routine. As much as my body hurts from this surgery, I am anxious to be back to my twice daily walk as soon as I can. I am giving myself time to rest and recover, but staying active and fit is more important to me than ever. Having seen the way it has helped me through the many phases of my cancer treatments, I am going to make sure I keep a priority in my life to focus on staying healthy. It's too easy to let work and other obligations get in the way of exercise, rest, reflection, healthy eating. What I know for sure, after these last five months, is that I need to make time - everyday - to take care of my self. The work of healing, and of staying healthy, is the most important job I have.
Final Surgery - Oct 15, 2014
Fall has come to Seattle; days are getting short, the air is cold and damp, the leaves have turned and litter the sidewalks. This morning it rained hard on my walk to work, but I feel strong and energized as I head in each morning.
I've had a couple of really good weeks at work. Last week I traveled with a team from US programs to visit two Historically Black Universities. It was a great trip and an opportunity to learn about the inspiring work we are doing! To hear the stories from the students and learn about the plans the leaders of these schools have for their institutions was an amazing opportunity for me. It's a good reminder of why I made the move to come to Seattle and work here.
Tomorrow is a different kind of journey. With any luck, this is the last major milestone in my cancer treatment. With this final surgery I will complete the plan my cancer team put together last spring. I've been through cancer surgery, four rounds of chemo, and countless appointments, tests, physical therapy sessions. This step brings closure and repair. From here it's all about healing and wholeness, returning to strength and living life again.
I'm a little anxious, surgery always has risks. I shed a few tears at work today as my team members wished me well. Their support has been amazing and I know they have things covered while I'm out.
Mostly, I'm ready to move forward. I'm ready to heal and to close out this chapter and even this year. It's fitting, somehow, to have this surgery with the onset of fall's short days and inward focus. I can cozy up by the fire, while the blustery weather chills, and work on healing my body and my spirit.
I've had a couple of really good weeks at work. Last week I traveled with a team from US programs to visit two Historically Black Universities. It was a great trip and an opportunity to learn about the inspiring work we are doing! To hear the stories from the students and learn about the plans the leaders of these schools have for their institutions was an amazing opportunity for me. It's a good reminder of why I made the move to come to Seattle and work here.
Tomorrow is a different kind of journey. With any luck, this is the last major milestone in my cancer treatment. With this final surgery I will complete the plan my cancer team put together last spring. I've been through cancer surgery, four rounds of chemo, and countless appointments, tests, physical therapy sessions. This step brings closure and repair. From here it's all about healing and wholeness, returning to strength and living life again.
I'm a little anxious, surgery always has risks. I shed a few tears at work today as my team members wished me well. Their support has been amazing and I know they have things covered while I'm out.
Mostly, I'm ready to move forward. I'm ready to heal and to close out this chapter and even this year. It's fitting, somehow, to have this surgery with the onset of fall's short days and inward focus. I can cozy up by the fire, while the blustery weather chills, and work on healing my body and my spirit.
Reconstruction - Oct. 11, 2014
Last Friday, Oct 3, I started my day with a hike up the hill to the hospital for a bone density scan. This will set a baseline for monitoring the impact of the aromatase inhibitors on my system, as bone loss is one of the most serious side effects. Happily, hiking the 13 blocks up Seattle's First Hill was not so bad! I feel like my strength is slowly returning, and so walking up the hill without struggling really feels good.
After the scan, I also walked back to work, enjoying the crisp morning air. I noticed small things along the way: fall leaves, morning shoppers, people walking their dogs. The sun was out, I was feeling good. It was a great start to my day. Later in the afternoon, after a day filled with work meetings and preparing for my business trip to the east coast, I headed back up the hill to meet with my plastic surgeon. This was my pre-surgery appointment for my reconstruction surgery, which is scheduled for October 16. The discussion with my doctor was a bit sobering. Joe came with me to hear the details about the surgery and recovery, I think mostly so he could hear all the restrictions from her firsthand.
This final surgery turns out to be a bit more involved than I expected. The doctor was pretty clear that I will need to stay at home for at least the first week, and do no lifting or physical activity involving my upper body for 3-4 weeks. She warned us that women can cause serious complications if they return to regular activity, too soon. It was hard to imagine another setback and recovery period. Just when I was starting to feel strong and healthy, now I will be back to work on recovery from another treatment. That is the hard part about cancer, you actually have to hurt your body in the effort to heal.
This final surgery is especially hard to prepare for as it is not about treating the cancer. This time I am going through surgery, and all the associated pain, for reconstruction. I am going through this to replace the breast that had cancer, and was removed during my mastectomy. I continue to struggle over whether reconstruction is the right choice for me. I have already completed much of the process for reconstruction, so at the very least I have to go through some surgery to remove the expander that is currently in place. Still full reconstruction is a complicated process. I am sure that a year from now, I will know better whether this was the right choice for me, whether it was worth all this new pain and recovery. But right now, it feels like a big price to pay, just to have an artificial breast that will never be the same as the one I lost to cancer.
This process is complicated, both physically and emotionally. It leaves me with lots of questions. More and more women are choosing to not have reconstruction after mastectomy. I have finished having kids and my breasts have already served their primary purpose. Does it make me less of a woman if I only have one breast? Is it vanity, or the need to feel normal, that made me choose reconstruction? Is it really worth the pain and recovery of another surgery? What if the cancer returns and all this is for naught?
I also wonder if the emotions I am feeling are more about the reconstruction of my life, than the reconstruction of my body. I can only hope that as I put this final surgery behind me, my life can return to something close to "normal". I hope I can return to something like what my life was like, before cancer.
A Change of Seasons - Sept 14, 2014
Two weeks and two days after my last chemo (last!) and I can feel a change in the air. I am sitting at Battlepoint park, playing with Butch. As I toss his ball, I look around the park and see hints of fall everywhere. There are geese on the pond, ready to begin heading south. The wind rustling through the drying leaves sounds like a whisper saying "change". The summer colors have softened to browns and golds, with a few scattered patches of red and orange. The smells have become dusty and old. Everywhere I look, fall is in the air.
Last time I posted, I spoke of summer lost. Today the fall breeze reminds me that every ending also brings something new. Fall is not generally a symbol of new beginnings, that is usually Spring's promise. But this year, Fall feels like a season of closure and of promise for me. It's the end of my treatments and surgeries. It marks closure for most of the cancer process. And with that closure, it also feels like the beginning of a new season for me.
Maybe it's the cool air and the end of summer activities in the park, but as I walk with Butch through the quiet of the autumn park, I feel just a little stronger today. I feel like my old self is starting to return. For the first time since chemo 4, I have been able to walk the loop without feeling winded and fatigued. I am beginning to be able to see past the pain and discomfort and really enjoy my walk again. It's allowing me to notice the little things that bring me happiness; the nature around me, kids playing, quiet time with my dog.
The seasons are changing and summer is over. Fall brings me new hope, new energy, and quieter time to recover. Not to mention, this is the season of Thanksgiving. It's a great time to remember that I have so much to be thankful for today!
Summer Lost - Sept 10, 2014
Lisa took summer with her when she left. The gray sky is back and my mood has turned to melancholy. You can see fall everywhere in my favorite park. The cold has licked the leaves, turning their tips to gold and red. How did fall come so fast, and where did summer go?
This summer was supposed to be our time. A time to explore our new city - Bainbridge/Seattle, and the surrounding outskirts. It was supposed to be a time to celebrate - our 30th anniversary, Kelsey's homecoming from Africa. We had plans, vacations, so many hopes for this summer.
Instead it has been time lost. Since my surgery, on Cinco de mayo, this summer has been all about breast cancer. It's been countless doctor visits. Treatments, shots, pills, recovery. It's been terrible side effects, fatigue, pain, lack of appetite, metallic tastes and smells. It has been a small world for me, centered in my house, or often, in my bed.
There have been no rafting trips, no Sea Ranch, no hiking, no swimming. Even dinners out are robbed of the familiar tastes of good food and a nice glass of wine. A friend asked me recently what I am doing to bring joy into my life right now. The question felt like a punch in my gut. Joy? I really can't remember joy.
Which is not to say that I haven't had happy moments this summer. Small things like watching nature, taking Butch to the park, reading a good book, sitting by our fire pit. The best times have been visits with family and friends. Special moments of connection, support, love.
I'm returning to work today, back to the office for the first time since my final chemo. I've been able to call into meetings and work online, but I'm still weak and tire quickly. This will be a test of my strength - do I have the stamina for the commute and a day in the office?
I hope I can begin to return to a regular schedule, a regular life. Seeing the kids waiting for their school buses reminds me that life has it's cycles. Even though this was my lost summer, fall is beginning and it's time to focus again. I'm ready to be past chemo and past cancer. I'm looking forward to the change of season and the colors of fall. Hopefully it's the start of a new season for me.
This summer was supposed to be our time. A time to explore our new city - Bainbridge/Seattle, and the surrounding outskirts. It was supposed to be a time to celebrate - our 30th anniversary, Kelsey's homecoming from Africa. We had plans, vacations, so many hopes for this summer.
Instead it has been time lost. Since my surgery, on Cinco de mayo, this summer has been all about breast cancer. It's been countless doctor visits. Treatments, shots, pills, recovery. It's been terrible side effects, fatigue, pain, lack of appetite, metallic tastes and smells. It has been a small world for me, centered in my house, or often, in my bed.
There have been no rafting trips, no Sea Ranch, no hiking, no swimming. Even dinners out are robbed of the familiar tastes of good food and a nice glass of wine. A friend asked me recently what I am doing to bring joy into my life right now. The question felt like a punch in my gut. Joy? I really can't remember joy.
Which is not to say that I haven't had happy moments this summer. Small things like watching nature, taking Butch to the park, reading a good book, sitting by our fire pit. The best times have been visits with family and friends. Special moments of connection, support, love.
I'm returning to work today, back to the office for the first time since my final chemo. I've been able to call into meetings and work online, but I'm still weak and tire quickly. This will be a test of my strength - do I have the stamina for the commute and a day in the office?
I hope I can begin to return to a regular schedule, a regular life. Seeing the kids waiting for their school buses reminds me that life has it's cycles. Even though this was my lost summer, fall is beginning and it's time to focus again. I'm ready to be past chemo and past cancer. I'm looking forward to the change of season and the colors of fall. Hopefully it's the start of a new season for me.
Cancer updates
I have not posted on this blog for some time, as I found it easier to post on Caring Bridge.org However, as I wind down from cancer treatments, I want to move some of those posts here and use this blog to do updates on both cancer and other topics.
What you will see is a series of posts that are the Caring Bridge posts moving over to this site. It will be in chronological order, but they are old posts from that site. Hopefull this is not too confusing. Thanks for sticking with me through all this.
Julie
What you will see is a series of posts that are the Caring Bridge posts moving over to this site. It will be in chronological order, but they are old posts from that site. Hopefull this is not too confusing. Thanks for sticking with me through all this.
Julie
Friday, August 22, 2014
The Aloneness of Cancer
There is an aloneness about cancer, a separateness, that makes me feel apart from the rest of the world. It's not the kind of isolation that comes from being intentionally excluded, but rather knowing that you are different and cannot fit in with everyone else. The treatment processes, the pain and fatigue, the fuzzy thinking are all constant reminders that I am walking another path in the world, at least for now.
In many ways, it reminds me of traveling in a new country where everyone speaks a language I can't understand and is part of a culture with different rules and norms. Or perhaps it is that I am in the midst of a familiar culture, but I no longer can fit in with the rest of the people here. I have changed and I can't participate in the simple things that would allow me to fit in with everyone else. My focus for the summer is my disease and all the steps I must go through to prevent it from spreading and to heal from the treatments. I don't have time for summer picnics, happy hours, hikes and games. I don't have the strength to explore new places and meet new people. I spend way too much of my free time recovering alone.
Most of my previous life has been packed away for now, set aside for another time. Much like the boxes we moved from our house in the Gorge, they are stacked and waiting for us to open them and bring the contents back into our new house. When my strength returns, and there is time for things besides cancer, these parts of my life can be brought back from storage. I know they will be there waiting, but for now so many things have been set aside.
I have felt this isolation and aloneness before, but never for months at a time. The closest feeling was a day I spent exploring Tokyo alone. There were thousands of people all around me. I took the subway to Asakusa to shop and explore. The narrow streets were full of people, but I felt completely alone. I bought my souvenirs, had lunch in a small restaurant, and took lots of pictures. It was a good day and I was happy, but as I was on the subway heading back to my hotel, I realized I had not spoken more than a few words all day. I did not understand anything that people around me had said either, all day long. As I sat there on the train, I felt invisible, like I did not even exist.
I wonder if I would be feeling this much isolation if I was still living in the Gorge. Would I feel so alone if I lived where more of our family and friends were? Joe and I had just been starting to settle into our new home on Bainbridge. We were enjoying exploring Seattle and things to do in the area. Then when cancer came into our lives, that also was put on hold. We know the hospital and our medical team, but have lost progress on building community in our new place.
Somehow, I think the aloneness would still be there, no matter where I live. When I first started writing about my journey, I said that I did not want to be defined by cancer. The reality for this summer, is that breast cancer is my life. While going through chemo, cancer really does define you. It dictates what you can do, what you eat, the many medicines you must take, how strong or weak you feel each day. It is almost all I think about, and all I can plan for each day.
I totally appreciate the many wonderful supporters, all our friends and family, who have been cheering me on and sending their messages of support. I can't tell you how much the cards, notes, and messages on caring bridge or in email mean to me and help me through this journey. The truth, though, is that this is a process and a journey I have to go through all alone. No one can take the load from my shoulders, even for a day. I carry the burden on my own, because it is in my body, until we get through this summer of breast cancer.
In many ways, it reminds me of traveling in a new country where everyone speaks a language I can't understand and is part of a culture with different rules and norms. Or perhaps it is that I am in the midst of a familiar culture, but I no longer can fit in with the rest of the people here. I have changed and I can't participate in the simple things that would allow me to fit in with everyone else. My focus for the summer is my disease and all the steps I must go through to prevent it from spreading and to heal from the treatments. I don't have time for summer picnics, happy hours, hikes and games. I don't have the strength to explore new places and meet new people. I spend way too much of my free time recovering alone.
Most of my previous life has been packed away for now, set aside for another time. Much like the boxes we moved from our house in the Gorge, they are stacked and waiting for us to open them and bring the contents back into our new house. When my strength returns, and there is time for things besides cancer, these parts of my life can be brought back from storage. I know they will be there waiting, but for now so many things have been set aside.
I have felt this isolation and aloneness before, but never for months at a time. The closest feeling was a day I spent exploring Tokyo alone. There were thousands of people all around me. I took the subway to Asakusa to shop and explore. The narrow streets were full of people, but I felt completely alone. I bought my souvenirs, had lunch in a small restaurant, and took lots of pictures. It was a good day and I was happy, but as I was on the subway heading back to my hotel, I realized I had not spoken more than a few words all day. I did not understand anything that people around me had said either, all day long. As I sat there on the train, I felt invisible, like I did not even exist.
I wonder if I would be feeling this much isolation if I was still living in the Gorge. Would I feel so alone if I lived where more of our family and friends were? Joe and I had just been starting to settle into our new home on Bainbridge. We were enjoying exploring Seattle and things to do in the area. Then when cancer came into our lives, that also was put on hold. We know the hospital and our medical team, but have lost progress on building community in our new place.
Somehow, I think the aloneness would still be there, no matter where I live. When I first started writing about my journey, I said that I did not want to be defined by cancer. The reality for this summer, is that breast cancer is my life. While going through chemo, cancer really does define you. It dictates what you can do, what you eat, the many medicines you must take, how strong or weak you feel each day. It is almost all I think about, and all I can plan for each day.
I totally appreciate the many wonderful supporters, all our friends and family, who have been cheering me on and sending their messages of support. I can't tell you how much the cards, notes, and messages on caring bridge or in email mean to me and help me through this journey. The truth, though, is that this is a process and a journey I have to go through all alone. No one can take the load from my shoulders, even for a day. I carry the burden on my own, because it is in my body, until we get through this summer of breast cancer.
Wednesday, July 23, 2014
Rainy Day Recovery
The clouds came today and washed away the blue sky, leaving behind a cool gray morning. Distant thunder and lightning called forth the day with a low rumble. NW overcast dimmed the sun so I could look out from the tunnel of chemo and not hurt my eyes. Everything was clean and gray and quiet. Perfect for a slow day of recovery.
Bright summer skies are perfect for the living. The light and warmth bring everyone out into the sun and everywhere activities abound. Streets are filled with people; walking, selling, meeting, shopping, looking, doing. Life abounds in a summer city.
For me, recovering from chemo, summer days are both a reminder of all I'm missing and an overwhelming amount of activity. The pain, like a migraine, is amplified by the light, noise and motion.
Today's respite from the sun was a soothing calm. The rainy day was permission to stay indoors, quiet, bundled. A day to nest and heal and be peaceful. The coolness and darkness of the day felt like a retreat from the world. It was healing time.
Late in the afternoon, the sky cleared. Sunlight filtered through the clouds and left a golden cast on the tops of the trees. Butch, my dog, and I emerged from the shelter of the house to greet the end of a peaceful, restful day. A day of healing and calm that ended with me feeling stronger, rested, with more healing, and hope for a brighter day tomorrow.
Bright summer skies are perfect for the living. The light and warmth bring everyone out into the sun and everywhere activities abound. Streets are filled with people; walking, selling, meeting, shopping, looking, doing. Life abounds in a summer city.
For me, recovering from chemo, summer days are both a reminder of all I'm missing and an overwhelming amount of activity. The pain, like a migraine, is amplified by the light, noise and motion.
Today's respite from the sun was a soothing calm. The rainy day was permission to stay indoors, quiet, bundled. A day to nest and heal and be peaceful. The coolness and darkness of the day felt like a retreat from the world. It was healing time.
Late in the afternoon, the sky cleared. Sunlight filtered through the clouds and left a golden cast on the tops of the trees. Butch, my dog, and I emerged from the shelter of the house to greet the end of a peaceful, restful day. A day of healing and calm that ended with me feeling stronger, rested, with more healing, and hope for a brighter day tomorrow.
Friday, July 18, 2014
The Top 10 Reasons to Celebrate Losing Your Hair
The journey through cancer is a strange one. There are times where I have no control over what this disease is doing to me and my body, and there are times and places where I can step in and chose how I want to go through this process. My hair began falling out last Saturday, while I was visiting my friend, Nancy Bloyer, who is facing stage four lung cancer. In some ways it was helpful to have it start there, where I had supportive and understanding people with me. On the other hand, I did not want my visit to be about my hair, so I did my best to not touch or brush it so I could minimize the 'fall out'.
I had a big meeting at work on Thursday, so part of me was hoping I could hang on to the hair until after that event. I would be out Friday (today) chemo and then recovery for the following week, so it could have given me the chance to get used to the hairlessness and hat/scarf option before returning to work. No such luck! By Tuesday it was coming out in handfuls and I knew I needed to take charge. Rather than face the clumps and random falling out, I went to the same hair place where I had my hair cut short. With a few tears, and the support of Joe and Kelsey, I had them shave my head! Even though it was hard, it was very empowering to have it done.
"In the spirit of trust and transparency, I want to share with you all why I have this scarf on today. I don't want it to distract you from the content of my talk, so I want you to know that I am being treated for breast cancer and I lost my hair this week. My next chemo is tomorrow and my prognosis looks good. Now lets focus on our topic today.."
It was well received and I felt good to get it out there. I was calm and confident, I know how to talk about my cancer now without too much emotion. Several people came up to me afterward and offered their support, a few sent emails describing how they appreciated my courage, and a couple shared their stories of their own breast cancer or a close loved one. It was another example of the power of "owning" my experience and choosing how I want to show up through the process.
In that light, here are my top 10 to celebrate losing your hair:
I had a big meeting at work on Thursday, so part of me was hoping I could hang on to the hair until after that event. I would be out Friday (today) chemo and then recovery for the following week, so it could have given me the chance to get used to the hairlessness and hat/scarf option before returning to work. No such luck! By Tuesday it was coming out in handfuls and I knew I needed to take charge. Rather than face the clumps and random falling out, I went to the same hair place where I had my hair cut short. With a few tears, and the support of Joe and Kelsey, I had them shave my head! Even though it was hard, it was very empowering to have it done.
The next day at work I wore a hat I had bought at the hospital cancer support center. There were lots of stares, a few folks who avoided eye contact, but mostly hugs and support from colleagues. At the Thursday meeting, where I was facilitating an hour of an all staff meeting (150ish people), I had a nice scarf on and decided to face the unspoken questions head on. After I introduced myself and the topic, which happened to be trust, I said:
It was well received and I felt good to get it out there. I was calm and confident, I know how to talk about my cancer now without too much emotion. Several people came up to me afterward and offered their support, a few sent emails describing how they appreciated my courage, and a couple shared their stories of their own breast cancer or a close loved one. It was another example of the power of "owning" my experience and choosing how I want to show up through the process.
In that light, here are my top 10 to celebrate losing your hair:
- You save lots of money by not buying hair products
- Both time and money saved from not going to the hair salon
- I get an extra 30 minutes of sleep, by not washing, drying and styling each morning
- No longer need to worry about the rainy Seattle days ruining my hairstyle
- Hats and scarves provide lots of new accessory options
- No need to worry about hat head, or bed head
- Having no hair really highlights your earing collection
- No need to shave during treatments (its not just your head where the hair falls out)
- Did I mention, no hair - anywhere?
- Lots of looks and stares - even though you are over 50!
Wednesday, July 2, 2014
Into the Tunnel and Back to the Light
Since my last post, I have made my first journey through the tunnel of chemotherapy. It has been hard and painful, but I can now say that I know I can do this. It will get harder each cycle, it will take a lot of strength and perseverance, but I now know that I will make it out the other side.
Chemo is a very different journey than surgery or illness. By the time my chemo was scheduled to begin, I was healed from surgery and life had returned to a normal routine (with a new cadence of doctor visits and tests). I was feeling really good and very strong. I had returned to work full time and walked to and from the ferry each day to stay fit. But the shadow of chemo hung over my summer and nothing much was planned beyond June 27. Otherwise life was good. It is a huge leap of faith to agree to poison one's self, especially when otherwise feeling good, for the promise of killing rogue cells that may grow into new cancers someday.
Going into the chemo treatment center last Friday was not hard for me I had an entourage with me and so many friends and family cheering me on from near and far. The center is very warm and welcoming, set up for treatments both optimistic and valiant. We were a hit in our matching chemo shirts and positive attitudes. The overall process took seven hours, but there was no pain or discomfort, just lots of waiting and boredom.
The next day was almost normal. I felt a little tired and a bit apprehensive, wondering when and what side effects would hit me. I to travel back to Seattle for a quick shot to boost my white blood cell count, an unfortunate requirement for every session given the effort required to get there and back. It essentially takes me two and a half hours of transit for a 10 minute shot. We made an adventure out of the journey and took a boat cruise to show my sisters Seattle from Kelsey's cruise line. It was a beautiful day and the trip was relaxing and fun. We were caught in a short squall on the way back to the ferry, so everyone got wet. Then the beginning effects of chemo hit. From one minute to the next, I went from feeling fine to exhausted. I suddenly could not keep my eyes open and took a short nap on Kelsey's shoulder.
From that moment, there were three and a half days where I lived in the chemo tunnel. I felt my mind and body leave me to a strange place of side effects and pain. The intense fatigue was the worst part. When it hit, I had to immediately sleep for 2-8 hours. I couldn't think or function, I just needed to drift into the tunnel and let my body and mind rest. When I awoke from these episodes, I felt better and alert, but still not quite myself. My sense of smell and taste were a constant reminder of the poison that coursed through my body. Everything was metallic and toxic. My fingers, toes, lips and tongue all tingled and felt somewhat numb. At times the numbness made it difficult to talk and eat. My head was also fuzzy, there were moments where I felt that I was looking at life from a great distance, not really in my own body or mind.
On Sunday the aches began. My bones hurt as the marrow increased production of white blood cells. It felt like a terrible flu, but without the fever or chills. Everything hurt and nothing really helped the pain, except rest and sleep. I tried to stay active, as the doctors suggested, but it was hard when I felt so strange. The support of my sisters, Joe and Kelsey helped me fight through the fog and distracted me from the effects of chemo. Anything to keep me in the moment was a huge gift as it kept me from descending into the tunnel.
My big mistake was returning to work on Tuesday. I was feeling better and ready to have some normalcy back in my schedule. On the walk from the ferry, I knew I was kidding myself. I walked slower than usual, but still felt both fatigue and a feeling that I was outside of my own body. I could not will myself back no matter how hard I tried. The tunnel pulled me in and would not release me. The work day went fine, I had gone for an HR Leadership meeting where everyone knew I was recovering and gave me a lot of grace for not being as alert and clear as usual. Still it was hard and I felt inadequate in the workplace when my body and mind were not fully present.
At home last night, the pain hit its pinnacle. I am not sure if it was the result of overdoing things or just the natural phase of chemo, but every part of me ached and struggled. Even the best pain meds from surgery were no match for the chemo tunnel. I laid in bed in the darkness, feeling the tunnel envelope me. It was dark and lonely, haunted by those who had journeyed through chemo before me. I longed for sleep to come and release me from my worst night, so far, in Cancerland. When it finally came, I slept long and woke up late.
Today started with the quiet of a summer fog in Puget Sound. The muffled sounds and cool morning was a welcome relief from a night hot with pain and struggle. A slow quiet morning allowed me to reenter the world and slowly gain my bearings. I felt better. I felt like myself, almost. The aches were gone, the fuzziness receded. By the time the sun came out in the early afternoon, I could see that I had made it out of the long tunnel. I had survived! My oncologist's nurse called to check on me and confirmed that by now the worst should be over. The sun felt like victory. I had returned. It felt like I had traveled through the long tunnel of chemo and successfully emerged on the other side. I was back and enjoying the sunshine of a beautiful NW day.
Chemo is a very different journey than surgery or illness. By the time my chemo was scheduled to begin, I was healed from surgery and life had returned to a normal routine (with a new cadence of doctor visits and tests). I was feeling really good and very strong. I had returned to work full time and walked to and from the ferry each day to stay fit. But the shadow of chemo hung over my summer and nothing much was planned beyond June 27. Otherwise life was good. It is a huge leap of faith to agree to poison one's self, especially when otherwise feeling good, for the promise of killing rogue cells that may grow into new cancers someday.
Going into the chemo treatment center last Friday was not hard for me I had an entourage with me and so many friends and family cheering me on from near and far. The center is very warm and welcoming, set up for treatments both optimistic and valiant. We were a hit in our matching chemo shirts and positive attitudes. The overall process took seven hours, but there was no pain or discomfort, just lots of waiting and boredom.
The next day was almost normal. I felt a little tired and a bit apprehensive, wondering when and what side effects would hit me. I to travel back to Seattle for a quick shot to boost my white blood cell count, an unfortunate requirement for every session given the effort required to get there and back. It essentially takes me two and a half hours of transit for a 10 minute shot. We made an adventure out of the journey and took a boat cruise to show my sisters Seattle from Kelsey's cruise line. It was a beautiful day and the trip was relaxing and fun. We were caught in a short squall on the way back to the ferry, so everyone got wet. Then the beginning effects of chemo hit. From one minute to the next, I went from feeling fine to exhausted. I suddenly could not keep my eyes open and took a short nap on Kelsey's shoulder.
From that moment, there were three and a half days where I lived in the chemo tunnel. I felt my mind and body leave me to a strange place of side effects and pain. The intense fatigue was the worst part. When it hit, I had to immediately sleep for 2-8 hours. I couldn't think or function, I just needed to drift into the tunnel and let my body and mind rest. When I awoke from these episodes, I felt better and alert, but still not quite myself. My sense of smell and taste were a constant reminder of the poison that coursed through my body. Everything was metallic and toxic. My fingers, toes, lips and tongue all tingled and felt somewhat numb. At times the numbness made it difficult to talk and eat. My head was also fuzzy, there were moments where I felt that I was looking at life from a great distance, not really in my own body or mind.
On Sunday the aches began. My bones hurt as the marrow increased production of white blood cells. It felt like a terrible flu, but without the fever or chills. Everything hurt and nothing really helped the pain, except rest and sleep. I tried to stay active, as the doctors suggested, but it was hard when I felt so strange. The support of my sisters, Joe and Kelsey helped me fight through the fog and distracted me from the effects of chemo. Anything to keep me in the moment was a huge gift as it kept me from descending into the tunnel.
My big mistake was returning to work on Tuesday. I was feeling better and ready to have some normalcy back in my schedule. On the walk from the ferry, I knew I was kidding myself. I walked slower than usual, but still felt both fatigue and a feeling that I was outside of my own body. I could not will myself back no matter how hard I tried. The tunnel pulled me in and would not release me. The work day went fine, I had gone for an HR Leadership meeting where everyone knew I was recovering and gave me a lot of grace for not being as alert and clear as usual. Still it was hard and I felt inadequate in the workplace when my body and mind were not fully present.
At home last night, the pain hit its pinnacle. I am not sure if it was the result of overdoing things or just the natural phase of chemo, but every part of me ached and struggled. Even the best pain meds from surgery were no match for the chemo tunnel. I laid in bed in the darkness, feeling the tunnel envelope me. It was dark and lonely, haunted by those who had journeyed through chemo before me. I longed for sleep to come and release me from my worst night, so far, in Cancerland. When it finally came, I slept long and woke up late.
Today started with the quiet of a summer fog in Puget Sound. The muffled sounds and cool morning was a welcome relief from a night hot with pain and struggle. A slow quiet morning allowed me to reenter the world and slowly gain my bearings. I felt better. I felt like myself, almost. The aches were gone, the fuzziness receded. By the time the sun came out in the early afternoon, I could see that I had made it out of the long tunnel. I had survived! My oncologist's nurse called to check on me and confirmed that by now the worst should be over. The sun felt like victory. I had returned. It felt like I had traveled through the long tunnel of chemo and successfully emerged on the other side. I was back and enjoying the sunshine of a beautiful NW day.
Saturday, June 7, 2014
In The Now
I love to read. When I want to learn something new, when I want to escape into another place or time, or when something happens that I don't understand - I often turn to books. Since my cancer diagnosis, I have read at least 20 books about breast cancer. (Reading list is a new page I will add to this blog).
I've read science, personal stories, doctors' guides and self help books to help me in my journey through breast cancer. They have all helped me in differing ways. The science of breast cancer books have helped my head in understanding this disease, making sense of the various processes I am going through, and in translating the language of cancer. The personal stories help my heart. Hearing real women share their decisions, the lessons they have learned and their personal journeys have helped prepare me for the emotional side of cancer treatment. It makes me feel less lonely to hear their voices.
The self help books I have been reading are not really about cancer. These have been my "go to" books for different challenges in my life. They help me relax during times of stress, center me when I am out of balance, relax, stretch, and eat right.
The most important lesson I have taken for cancer, through many of these 'go to' books, has been the reminder to be fully present - to live in the now. When I feel especially emotional or even depressed about all that is cancer, it's usually when I am looking ahead at the many doctors and chemo appointments, or worried about how long it will take for life to return to "normal". This is not a process anyone can swallow in one bite. It's easy to worry about how hard things might be, instead of waiting to see how they really are.
When I am fully present, I enjoy the moments I am living. I focus on what is, not what might or might not be. I don't miss seeing the beautiful things around me, or the wonderful people supporting me. I can celebrate small and big improvements, moments where I feel strong and healthy, still. Life happens in the now. I can't afford to be distracted by things I can't control. I need to appreciate the moments in life as they happen, they are too precious to miss.
Sunday, June 1, 2014
Seattle Race for the Cure
Kelsey and I got up early today and, even though this is our day to sleep in, we took the ferry at 7:05am. We walked to the Seattle Center (with a quick detour at Starbucks) and participated in The Seattle Race for the Cure.
It was a bittersweet event for me. I have walked, or run, the Portland race 10 or 12 times over the years. I have been there to support women I knew, and those I did not, all who have faced breast cancer. I remember walking the Sunday after 9/11. The race was almost cancelled, but it went on because people needed to come together, to cry and to support something that still mattered during that time of sadness and confusion. Once, when Kelsey was in high school, I ran the 5K and then walked it again with Kelsey and my quilting friends. Today we didn't run and could only do the 1K walk.
But only being up for a 1K walk was not what made it bittersweet. What was hard was now being part of the survivor's club, just 4 weeks after my mastectomy. The emotion of breast cancer was still too fresh, the wounds were still too raw. I do not yet feel like a survivor. I have too many steps for my recovery before I will really be able to claim survivorship. Still, I wore the shirt and received my medal. Wearing the survivor colors earned me high fives, several hugs and a blanket that will help me through chemo. It was an amazing event and, even with all the emotion, I am glad I was there.
The race itself is a celebration of all women who face this disease. It is amazing to see so many women coming together with strength, courage and sisterhood. It is a party for those who have survived, complete with crazy costumes, noisemakers, party hats. And it's a memorial to all the women who have not, with their pictures, their stories, and many signs carried by those who loved them. Everyone there knows far too many of both. So today we came together and we laugh and we weep, we cheer and we mourn. We share the moment as sisters, husbands, children, brothers.
And then, when we are done, we hug, we support each other, and we wish for a cure. We all wish that no one else would ever need to face cancer, of any kind, ever, ever again.
It was a bittersweet event for me. I have walked, or run, the Portland race 10 or 12 times over the years. I have been there to support women I knew, and those I did not, all who have faced breast cancer. I remember walking the Sunday after 9/11. The race was almost cancelled, but it went on because people needed to come together, to cry and to support something that still mattered during that time of sadness and confusion. Once, when Kelsey was in high school, I ran the 5K and then walked it again with Kelsey and my quilting friends. Today we didn't run and could only do the 1K walk.
But only being up for a 1K walk was not what made it bittersweet. What was hard was now being part of the survivor's club, just 4 weeks after my mastectomy. The emotion of breast cancer was still too fresh, the wounds were still too raw. I do not yet feel like a survivor. I have too many steps for my recovery before I will really be able to claim survivorship. Still, I wore the shirt and received my medal. Wearing the survivor colors earned me high fives, several hugs and a blanket that will help me through chemo. It was an amazing event and, even with all the emotion, I am glad I was there.
The race itself is a celebration of all women who face this disease. It is amazing to see so many women coming together with strength, courage and sisterhood. It is a party for those who have survived, complete with crazy costumes, noisemakers, party hats. And it's a memorial to all the women who have not, with their pictures, their stories, and many signs carried by those who loved them. Everyone there knows far too many of both. So today we came together and we laugh and we weep, we cheer and we mourn. We share the moment as sisters, husbands, children, brothers.
And then, when we are done, we hug, we support each other, and we wish for a cure. We all wish that no one else would ever need to face cancer, of any kind, ever, ever again.
Wednesday, May 28, 2014
My Superpowers are not Working
Just when I thought I had this breast cancer thing figured out, I have faced the harsh reality of real life. I am not 'Super Woman' or even 'Amazing Cancer Girl'. No I am just a regular, simple human - with no super powers, after all.
Today was my second day back at work. Almost everyone I have met with, over the last two days, has told me that they were surprised I was back so soon (a warning message if I ever heard one) and that I looked really good (ie. better than expected for 3 weeks after surgery).
On day 1, I was excited to be back and reengaging with the work I love. Kelsey walked with me from the ferry, both for moral support and to carry my stuff, since I'm not supposed to lift anything. I felt great, until about noon. Then I could feel my energy start to slip. It was hard to concentrate and I just felt a bit fuzzy. So much was going on, so much to process, it was just a bit too much.
I had a doctor's appointment, so I left early and took a cab to the cancer center. The doctor took out my final stitches and warned me not to over do things at work. Otherwise, she said that everything looked good, she renewed my muscle medication, and reminded me that walking is good, lifting is bad. I got home a little early, ate dinner and went straight to bed. I was exhausted!
Day 2 was even harder. My calendar was completely booked with meetings. I had asked for a second laptop, so I could keep one computer in the office and one at home. Even laptops are too heavy to lug back and forth on the ferry every day. What I didn't consider is how hard it would be just carrying a laptop between meetings all day.
On day2, I felt more engaged and capable mentally, not quite my old self but pretty good. By the end of the day, however, I felt much worse physically. As hard as I tried to rally, my body just couldn't give anymore.
Instead of walking the whole way to the ferry, I listened to my body and took the monorail halfway. Unfortunately, I was bringing home the second laptop, which I carried carefully only on my left side. Even though I tried to take it easy, carrying the laptop proved to be too much. By the time I hit the ferry, I was in real pain. When I got off and reached my husband's car, I hurt so badly that I was in tears!
Once I had a chance to relax and take my muscle relaxants, the pain subsided. I ate dinner and felt my energy come back. I am really tired, but more difficult is the realization that I am not even close to being back to normal.
As much as I want to move forward and get beyond cancer, I am still not fully healed. I still have more treatments and another surgery before I am finished with reconstruction. Then there is the big challenge of chemotherapy to get through. I want to be strong and super human. But, this is a long term process and we are only just beginning the journey through cancer. Tonight I have to face reality. There really isn't a magic spell or any super power that can make it happen any faster.
Today was my second day back at work. Almost everyone I have met with, over the last two days, has told me that they were surprised I was back so soon (a warning message if I ever heard one) and that I looked really good (ie. better than expected for 3 weeks after surgery).
On day 1, I was excited to be back and reengaging with the work I love. Kelsey walked with me from the ferry, both for moral support and to carry my stuff, since I'm not supposed to lift anything. I felt great, until about noon. Then I could feel my energy start to slip. It was hard to concentrate and I just felt a bit fuzzy. So much was going on, so much to process, it was just a bit too much.
I had a doctor's appointment, so I left early and took a cab to the cancer center. The doctor took out my final stitches and warned me not to over do things at work. Otherwise, she said that everything looked good, she renewed my muscle medication, and reminded me that walking is good, lifting is bad. I got home a little early, ate dinner and went straight to bed. I was exhausted!
Day 2 was even harder. My calendar was completely booked with meetings. I had asked for a second laptop, so I could keep one computer in the office and one at home. Even laptops are too heavy to lug back and forth on the ferry every day. What I didn't consider is how hard it would be just carrying a laptop between meetings all day.
On day2, I felt more engaged and capable mentally, not quite my old self but pretty good. By the end of the day, however, I felt much worse physically. As hard as I tried to rally, my body just couldn't give anymore.
Instead of walking the whole way to the ferry, I listened to my body and took the monorail halfway. Unfortunately, I was bringing home the second laptop, which I carried carefully only on my left side. Even though I tried to take it easy, carrying the laptop proved to be too much. By the time I hit the ferry, I was in real pain. When I got off and reached my husband's car, I hurt so badly that I was in tears!
Once I had a chance to relax and take my muscle relaxants, the pain subsided. I ate dinner and felt my energy come back. I am really tired, but more difficult is the realization that I am not even close to being back to normal.
As much as I want to move forward and get beyond cancer, I am still not fully healed. I still have more treatments and another surgery before I am finished with reconstruction. Then there is the big challenge of chemotherapy to get through. I want to be strong and super human. But, this is a long term process and we are only just beginning the journey through cancer. Tonight I have to face reality. There really isn't a magic spell or any super power that can make it happen any faster.
Wednesday, May 21, 2014
Slow down, you move too fast
This morning I awoke to a cloudy gray sky. After several sunny NW days, I was actually glad to have clouds. They are a reminder to slow down and be still. The cloudy sky allowed me to sleep later and to start the day peacefully. Yesterday I called into a couple of meetings at work. Even though I was just listening in for most of the time, by mid-afternoon it was clear that I had done too much. I hurt and had a flare up of muscle pain, intense enough that Joe wanted me to call the doctor (which I did not do).
Today I am enjoying the stillness of a cloudy morning. I took Butch for a quiet walk in the park. It was nice because the clouds also kept most of the crowds away. I could let him run and relax, rather than having to leash him. I could pay attention to the small things, trees that have new flowers, baby ducks in the pond, the sounds and smells of spring.
One of the interesting lessons from cancer, is the importance of being in the moment. First because you are in a place where you want to see, hear, smell and feel the life around you, the Zen of being present. But even more so, because you are in a space where the future is so uncertain. Right now I can't make plans beyond June 5, because I don't know what the timing or impact of my chemo treatment will be. I can't think beyond this summer, because there are so many unknowns about how I will feel and what else may be happening with my treatments. Its hard to imagine how I will feel or what I will want to do a year from now. And to imagine several years out, I feel like I would almost jinx myself if I think about plans for a distant future, at least until I get through this cancer journey.
I am a planner, so this is especially hard for me. I am always thinking about the years ahead, planning for vacations or saving money for retirement, imagining what we will be doing,... someday. Its hard to be in a space where my future feels so uncertain, where life itself feels so tenuous. And yet, it is also a relief to just let go. To allow myself to release the burden of trying to plan for and control the future, feels freeing.
If all I have for sure is today, then I can just be, just notice, just enjoy...what life is, right now.
Today I am enjoying the stillness of a cloudy morning. I took Butch for a quiet walk in the park. It was nice because the clouds also kept most of the crowds away. I could let him run and relax, rather than having to leash him. I could pay attention to the small things, trees that have new flowers, baby ducks in the pond, the sounds and smells of spring.
One of the interesting lessons from cancer, is the importance of being in the moment. First because you are in a place where you want to see, hear, smell and feel the life around you, the Zen of being present. But even more so, because you are in a space where the future is so uncertain. Right now I can't make plans beyond June 5, because I don't know what the timing or impact of my chemo treatment will be. I can't think beyond this summer, because there are so many unknowns about how I will feel and what else may be happening with my treatments. Its hard to imagine how I will feel or what I will want to do a year from now. And to imagine several years out, I feel like I would almost jinx myself if I think about plans for a distant future, at least until I get through this cancer journey.
I am a planner, so this is especially hard for me. I am always thinking about the years ahead, planning for vacations or saving money for retirement, imagining what we will be doing,... someday. Its hard to be in a space where my future feels so uncertain, where life itself feels so tenuous. And yet, it is also a relief to just let go. To allow myself to release the burden of trying to plan for and control the future, feels freeing.
If all I have for sure is today, then I can just be, just notice, just enjoy...what life is, right now.
Monday, May 19, 2014
Sunny afternoon
Exactly two weeks ago, I had my surgery for breast cancer. I remember the tears when I said good-bye to my husband and they wheeled me to the surgery room. I also remember consciously centering myself and relaxing, as they moved me to the table and started the process to remove my cancer and breast. Once they started the anesthesia, of course, I quickly went to sleep and they carefully and thoroughly completed the mastectomy. I awoke several hours later to my sweet husband's face - and the happy news that the lymph nodes were clear.
Today was a big milestone in my recovery. I had another follow-up with the reconstruction surgeon. She was very pleased with how I am healing. The wonderful thing today was the removal of the final drain from my chest! This means I can shower, sleep without getting tangled in the tubes, and wear normal clothes/undergarments again! It felt like a huge step towards being healed and reduces an area of discomfort that wasn't really painful, but was a huge hassle to deal with everyday.
Now I can work on building back my strength, improving my range of motion, and returning to activities and work. I still have a fair amount of pain, especially muscle spasms in my chest and back. The reconstruction process will still take a few months, and will include an outpatient surgery to complete the process in about six months.
And we can't forget about chemotherapy. I still don't have the details for that phase of treatment, as the oncologist is having an additional test done on the cancer tissue. I don't meet with her again until June 5. While it is hard to wait a couple more weeks, I am actually very happy to enjoy this break in treatment and focus on healing! I will still have at least two doctor's appointments each week - reconstruction and physical therapy, so my schedule and my life are not exactly back to normal.
What is normal now anyway? The ongoing pain and my missing breast are a constant reminder of the many changes cancer has brought to my life. So are the many cards, letters, facebook posts, blog comments, food preparations, and so many other special ways that people have been sharing their love and support for my family and me in this cancer journey. We feel the love from near and far. We hope you feel it back from us, as well.
As I sit in the afternoon sun, looking out at the flowers, birds, grass and trees at my house, I feel grateful for all that is good in my life. I am so fortunate to have so many people cheering for me. I am so lucky we caught the cancer early. I am so thankful that I work at the Foundation, where I have good insurance and so much support for taking the time I need for all the cancer treatments. Yes, cancer really sucks! I would not wish this on anyone. But, as I think of all the progress I have made these past two weeks, I really just feel happy and thankful!
Today was a big milestone in my recovery. I had another follow-up with the reconstruction surgeon. She was very pleased with how I am healing. The wonderful thing today was the removal of the final drain from my chest! This means I can shower, sleep without getting tangled in the tubes, and wear normal clothes/undergarments again! It felt like a huge step towards being healed and reduces an area of discomfort that wasn't really painful, but was a huge hassle to deal with everyday.
Now I can work on building back my strength, improving my range of motion, and returning to activities and work. I still have a fair amount of pain, especially muscle spasms in my chest and back. The reconstruction process will still take a few months, and will include an outpatient surgery to complete the process in about six months.
And we can't forget about chemotherapy. I still don't have the details for that phase of treatment, as the oncologist is having an additional test done on the cancer tissue. I don't meet with her again until June 5. While it is hard to wait a couple more weeks, I am actually very happy to enjoy this break in treatment and focus on healing! I will still have at least two doctor's appointments each week - reconstruction and physical therapy, so my schedule and my life are not exactly back to normal.
What is normal now anyway? The ongoing pain and my missing breast are a constant reminder of the many changes cancer has brought to my life. So are the many cards, letters, facebook posts, blog comments, food preparations, and so many other special ways that people have been sharing their love and support for my family and me in this cancer journey. We feel the love from near and far. We hope you feel it back from us, as well.
As I sit in the afternoon sun, looking out at the flowers, birds, grass and trees at my house, I feel grateful for all that is good in my life. I am so fortunate to have so many people cheering for me. I am so lucky we caught the cancer early. I am so thankful that I work at the Foundation, where I have good insurance and so much support for taking the time I need for all the cancer treatments. Yes, cancer really sucks! I would not wish this on anyone. But, as I think of all the progress I have made these past two weeks, I really just feel happy and thankful!
Wednesday, May 14, 2014
Healing time
Its been awhile since I have updated this blog. As I think back over the past week, I have done very little. My primary work since May 5, my surgery date, has been simply to heal. Its pretty mundane stuff, this cancer process. Recovering from surgery is slow, small, and simple. My life has slid way down Maslow's hierarchy of needs. Instead of working toward the attributes of self actualization, I am completely focused on food, water, sleep and health. The basic building blocks become everything, when you are recovering from a significant surgery. Making a positive impact in the bigger world, will just have to wait.
Over the past week, I have been consumed by the small stuff of life. Friends from work have been sending food each night - so we have had to do very little cooking. My daughter and husband are caring for me and keeping the rest of the household in order. I have no responsibilities, no work to do, nothing to contribute. So all my time has been spent on recovery. One thing that means is lots of sleep - for sleep is where a lot of healing happens. The first few days the pain was strong enough to wake me from sleep as soon as the medicines wore off. Four hours was the duration of pain relief, so there were lots of afternoon naps and resting during the day to give me the needed sleep time for healing.
Then there were activities required by the doctors. We had a whole schedule for attending to all the medications for pain, for muscle spasms, for fighting infections. I came home with two surgical drains to keep fluids from accumulating in my chest. The drains had to be emptied, measured, recorded, and reset several times a day. There were stretching exercises, but also a long list of things I could not do. My right breast was removed, so my right arm not only hurt, but was not to be used for anything that could cause strain on my surgery site. No lifting, no pushing, no pulling. The hardest thing was to not use my right arm and hand to push myself up from bed or a chair. Anything with force against that arm could open the sutures and require a trip to the ER.
When I am busy working full time and consumed with all the chores at home, I often wish for quiet time. I yearn for moments to reflect and be still. Now that I have nothing but time, I am restless and anxious to return to the busy schedule that I so often dread. This past week, I have had to slow way down, to really pay attention to my body and the healing process. Being comfortable doing nothing does not come easy to me. As much as I want to get back to my normal routine, I feel the pain and the fatigue when I over do right now. The pain quickly reminds me that my healing requires stillness. So much lies ahead for me in this long cancer journey. Learning to accept the quiet and to enjoy being patient and still, that is my lesson for this week in cancerland.
Over the past week, I have been consumed by the small stuff of life. Friends from work have been sending food each night - so we have had to do very little cooking. My daughter and husband are caring for me and keeping the rest of the household in order. I have no responsibilities, no work to do, nothing to contribute. So all my time has been spent on recovery. One thing that means is lots of sleep - for sleep is where a lot of healing happens. The first few days the pain was strong enough to wake me from sleep as soon as the medicines wore off. Four hours was the duration of pain relief, so there were lots of afternoon naps and resting during the day to give me the needed sleep time for healing.
Then there were activities required by the doctors. We had a whole schedule for attending to all the medications for pain, for muscle spasms, for fighting infections. I came home with two surgical drains to keep fluids from accumulating in my chest. The drains had to be emptied, measured, recorded, and reset several times a day. There were stretching exercises, but also a long list of things I could not do. My right breast was removed, so my right arm not only hurt, but was not to be used for anything that could cause strain on my surgery site. No lifting, no pushing, no pulling. The hardest thing was to not use my right arm and hand to push myself up from bed or a chair. Anything with force against that arm could open the sutures and require a trip to the ER.
When I am busy working full time and consumed with all the chores at home, I often wish for quiet time. I yearn for moments to reflect and be still. Now that I have nothing but time, I am restless and anxious to return to the busy schedule that I so often dread. This past week, I have had to slow way down, to really pay attention to my body and the healing process. Being comfortable doing nothing does not come easy to me. As much as I want to get back to my normal routine, I feel the pain and the fatigue when I over do right now. The pain quickly reminds me that my healing requires stillness. So much lies ahead for me in this long cancer journey. Learning to accept the quiet and to enjoy being patient and still, that is my lesson for this week in cancerland.
Thursday, May 8, 2014
My Personal Pity Party
I believe in the power of positive thinking. I know that surrounding myself with people who are supportive and care about me will help me heal. I choose to focus on what I know, rather than worry about all the possible bad things that might happen. I am strong, healthy and ready to do my best to heal. These are some of the messages of positive self-talk that I practice every day. Keeping a positive focus has served me well as I have embarked on this cancer journey. Well, except for the day of my Pity Party.
The Pity Party happened just a couple of days after I first met my cancer surgeon, Dr. Dawson. She scheduled an MRI to see if there were other potential sites with cancer in my lymph nodes or my other breast. The only day that was available for the MRI that week, was the day I had signed up for a class I had been wanting to attend for months. Joe was working on our Gorge house, so I went to the appointment on my own. I started the day feeling sad, lonely, and pretty sorry for myself.
The MRI itself was not bad at all. I just had to lie face down in a tunnel without moving for 20 minutes. I closed my eyes and let the sounds of the machine wash over me. It was like some weird electronic concert - do, do, do, do. Waw, waw, waw, waw. Nah, nah, nah, nah. Boo, boo, boo, boo. It was actually pretty relaxing, in a claustrophobic, noisy tunnel kind of way.
The Pity Party started just after the MRI. My appointment with my cancer surgeon was not for 2 hours. Not enough time to go to the office, but too much time to sit and have coffee. I had too much time, and too much to think about. It was a cool day, but not raining, so I decided to take a long walk. I thought it would distract me to walk around Capital Hill, but instead all I could think of was the MRI.
My doctor had warned us that the tracers for the MRI could "light up" with small spots of cancer everywhere. She insisted that it was not something to get worried about. She was looking to see if my left breast had any suspicious tissue and whether there were cancer cells in any lymph nodes. The MRI would not rule out the need to biopsy a sentinel node, but could give an early indication about potential cancer sites.
As I walked the streets of Capital Hill, fear quickly crept into my head. I tried to notice the spring flowers, but all I could think of were the "lights of cancer" on my MRI. Before I knew it, I was in tears. I was feeling very sorry for myself. I was, sad, afraid, angry.. and actually a bit lost. While walking in a fog of emotions, I had not paid attention to where I was going. Being lost is one thing that makes me crazy with frustration, so now that emotion was added to the mix. I let the tears flow. I sat down on a bench and sobbed for a while. It was my first real release of emotion since I heard the cancer word.
As much as a Pity Party can help release emotions, at the end of my little crying jag, I still had cancer and I still was lost. I looked up, checked in with Siri as to my whereabouts, and headed back to the cancer center. I brought the dark clouds of fear and sadness with me to my meeting with Dr. Dawson and prepared myself for the worst. Dr. Dawson, however, was very cheerful. She handed me my MRI results, looked me in the eye and said, "this is very good news, your MRI is clear".
There were no signs of cancer in my left breast or in the lymph nodes, although she cautioned that we could not rule out node involvement until surgery. I was speechless. I also felt pretty stupid. I had worked myself into a total Pity Party, for no reason. All that fear, sadness, and negative energy,were just a waste of my time. Even if the news had been bad, worrying for 2 hours and getting myself all worked up about it, would not have changed the results, either. As I left the cancer center, I now noticed the flowers, the birds and the beauty of a Seattle spring day. I am sure there will be plenty of opportunities ahead to feel sorry for myself and to be scared, but when I do I will remember the Pity Party for my MRI, where cancer didn't even show up.
The Pity Party happened just a couple of days after I first met my cancer surgeon, Dr. Dawson. She scheduled an MRI to see if there were other potential sites with cancer in my lymph nodes or my other breast. The only day that was available for the MRI that week, was the day I had signed up for a class I had been wanting to attend for months. Joe was working on our Gorge house, so I went to the appointment on my own. I started the day feeling sad, lonely, and pretty sorry for myself.
The MRI itself was not bad at all. I just had to lie face down in a tunnel without moving for 20 minutes. I closed my eyes and let the sounds of the machine wash over me. It was like some weird electronic concert - do, do, do, do. Waw, waw, waw, waw. Nah, nah, nah, nah. Boo, boo, boo, boo. It was actually pretty relaxing, in a claustrophobic, noisy tunnel kind of way.
The Pity Party started just after the MRI. My appointment with my cancer surgeon was not for 2 hours. Not enough time to go to the office, but too much time to sit and have coffee. I had too much time, and too much to think about. It was a cool day, but not raining, so I decided to take a long walk. I thought it would distract me to walk around Capital Hill, but instead all I could think of was the MRI.
My doctor had warned us that the tracers for the MRI could "light up" with small spots of cancer everywhere. She insisted that it was not something to get worried about. She was looking to see if my left breast had any suspicious tissue and whether there were cancer cells in any lymph nodes. The MRI would not rule out the need to biopsy a sentinel node, but could give an early indication about potential cancer sites.
As I walked the streets of Capital Hill, fear quickly crept into my head. I tried to notice the spring flowers, but all I could think of were the "lights of cancer" on my MRI. Before I knew it, I was in tears. I was feeling very sorry for myself. I was, sad, afraid, angry.. and actually a bit lost. While walking in a fog of emotions, I had not paid attention to where I was going. Being lost is one thing that makes me crazy with frustration, so now that emotion was added to the mix. I let the tears flow. I sat down on a bench and sobbed for a while. It was my first real release of emotion since I heard the cancer word.
As much as a Pity Party can help release emotions, at the end of my little crying jag, I still had cancer and I still was lost. I looked up, checked in with Siri as to my whereabouts, and headed back to the cancer center. I brought the dark clouds of fear and sadness with me to my meeting with Dr. Dawson and prepared myself for the worst. Dr. Dawson, however, was very cheerful. She handed me my MRI results, looked me in the eye and said, "this is very good news, your MRI is clear".
There were no signs of cancer in my left breast or in the lymph nodes, although she cautioned that we could not rule out node involvement until surgery. I was speechless. I also felt pretty stupid. I had worked myself into a total Pity Party, for no reason. All that fear, sadness, and negative energy,were just a waste of my time. Even if the news had been bad, worrying for 2 hours and getting myself all worked up about it, would not have changed the results, either. As I left the cancer center, I now noticed the flowers, the birds and the beauty of a Seattle spring day. I am sure there will be plenty of opportunities ahead to feel sorry for myself and to be scared, but when I do I will remember the Pity Party for my MRI, where cancer didn't even show up.
Wednesday, May 7, 2014
The Art of Letting Go
As they wheeled me to the surgery room, to remove my right breast, I found myself reflecting on all that has changed for me in this past year. I have been through so much change, that at times it feels overwhelming. I started a new job with the Gates Foundation and my husband, Joe, retired from teaching. We moved to Seattle after living in our Columbia River Gorge house for over 20 years. We bought a new house and started learning a new way of life. Everything is hard when you move, finding new doctors, dentists, hair dressers, even new grocery stores makes you feel unsettled. I found myself fighting the personal transitions, while Joe embraced the changes. We moved for my job, and I love my work and the people at the Foundation, but Joe is the one who has found his people and his routine. The personal side of these changes has been harder for me than I ever expected. I am still working on making this place into my home.
Shortly before my diagnosis, we had decided to sell our Gorge house. I struggled with that decision, as well. We raised our three kids in that house, it's rooms are full with a lifetime of memories and possessions. I thought I would live there forever. That was my place, my happily ever after. As I was struggling with all these life changes, there were so many things I was clinging to from my previous life. Then I was diagnosed with cancer.
As I heard the "C" word, my health and survival became my singular focus. The more I began to understand about the long journey to remove this disease, the more I realized that the "stuff" didn't matter anymore. All the possessions, the things we have accumulated over 30 years of marriage, even the house we built with our own hands were suddenly secondary. As I contemplated letting go of so many things that I had once treasured, I realized that the process of letting go was just what I needed to face cancer. I needed to let go of the things that hold me back. This is a time to simplify and move forward, not a time to hang onto the past. As I grow in my acceptance of this disease, I find that it is easier to let go of the old house, the stuff, and even my self image. By lightening my load, I can focus on the people who give me love and support, and the small things that give me joy. It feels like a feng shui on my whole life. Through my cancer journey, I have lost my right breast. I will lose my hair and, worst of all, I will not be considered healthy for a long time. But I can accept that price to ensure that I am ready and open to whatever treatment is necessary to save my life.
I am ready to let go and surrender to the process of my cancer treatments. What I can't let go of is the love and support from you, my family and friends. In the end, that love and support is all that matters. Your love and support will carry me through the many months ahead in my cancer journey. The rest is just stuff.
Shortly before my diagnosis, we had decided to sell our Gorge house. I struggled with that decision, as well. We raised our three kids in that house, it's rooms are full with a lifetime of memories and possessions. I thought I would live there forever. That was my place, my happily ever after. As I was struggling with all these life changes, there were so many things I was clinging to from my previous life. Then I was diagnosed with cancer.
As I heard the "C" word, my health and survival became my singular focus. The more I began to understand about the long journey to remove this disease, the more I realized that the "stuff" didn't matter anymore. All the possessions, the things we have accumulated over 30 years of marriage, even the house we built with our own hands were suddenly secondary. As I contemplated letting go of so many things that I had once treasured, I realized that the process of letting go was just what I needed to face cancer. I needed to let go of the things that hold me back. This is a time to simplify and move forward, not a time to hang onto the past. As I grow in my acceptance of this disease, I find that it is easier to let go of the old house, the stuff, and even my self image. By lightening my load, I can focus on the people who give me love and support, and the small things that give me joy. It feels like a feng shui on my whole life. Through my cancer journey, I have lost my right breast. I will lose my hair and, worst of all, I will not be considered healthy for a long time. But I can accept that price to ensure that I am ready and open to whatever treatment is necessary to save my life.
I am ready to let go and surrender to the process of my cancer treatments. What I can't let go of is the love and support from you, my family and friends. In the end, that love and support is all that matters. Your love and support will carry me through the many months ahead in my cancer journey. The rest is just stuff.
Sunday, May 4, 2014
Sharing the news
Telling friends and family that you have cancer is tough. When I first found out, it was tough because it was so hard for me to even say the words out loud. Just saying the words made it real, scary, almost unthinkable. It also made me all about cancer - once you say "I have cancer" it becomes everything. It feels like it suddenly defines who you are. I want to say to the world, I am still me, I am not just cancer!
I did not want to tell anyone until we talked to our cancer surgeon. I needed to have a few answers about what was ahead, I needed to know what this meant before I could tell my story. After that day when I met with my surgeon, I could only call just a few people. I called my sister, Lisa. She had been through some difficult things, she had leaned on others to share her news, she knew what it meant to need others to speak for her. I told her and asked her to call my family and tell them. I also asked her to ask them to give me space, a few days before I could talk. It was still too hard to say the words, "I have cancer."
I sent a few emails out to friends, telling them the information and the prognosis. Telling them I needed their support, and asking them not to call. Emails could be read when I was safely at home, when I had the space to laugh, or cry, or fall apart. Talking to people live, no matter how much they wanted to support me, was just too heartbreaking.
At work, I sent out an email. It had all the facts and also asked for space and patience. It went to my team, the HR leadership, the leaders at work that I directly support. Although I was not worried about privacy or afraid of people knowing, I was afraid of how I would respond. People were kind, supportive and caring - but that brought me to my knees. I could not be professional and strong, when people were worried about me. I was worried too, scared for me, but even more I was scared and worried about my husband, my kids, my extended family. The tears were so close to the surface, it made it hard to think about anything except work. While I was in that professional space, I could be there and be myself. When it became personal, all my deepest fears came right to the surface.
It took a few weeks of doctors appointments, research, reading and just being with the
diagnosis before I settled in, accepted the cancer and became at peace with this new me. I am not cancer, I am still Julie. This has happened to me, but it does not define me, I am still my same old self. I can't change the diagnosis, but I can choose how to approach this journey. I did not deserve this, I did not do anything to make this happen. As my surgeon told me, this type of cancer is random. Random. At first that was unsettling, but now there is some comfort in knowing that it could really just be random.
So, I am going into my surgery calm, at peace and ready to move through cancer treatment without hurt, blame or anger, but with love, peace and acceptance. I know I am strong and I know I am willing to do everything to survive. The path to healing is through love, support and caring. I have so much support from so many people. I have all the love in my heart for my family, friends and everyone with me in this journey. That is all I need....that is all that really matters. Thank you all for your love.
I did not want to tell anyone until we talked to our cancer surgeon. I needed to have a few answers about what was ahead, I needed to know what this meant before I could tell my story. After that day when I met with my surgeon, I could only call just a few people. I called my sister, Lisa. She had been through some difficult things, she had leaned on others to share her news, she knew what it meant to need others to speak for her. I told her and asked her to call my family and tell them. I also asked her to ask them to give me space, a few days before I could talk. It was still too hard to say the words, "I have cancer."
I sent a few emails out to friends, telling them the information and the prognosis. Telling them I needed their support, and asking them not to call. Emails could be read when I was safely at home, when I had the space to laugh, or cry, or fall apart. Talking to people live, no matter how much they wanted to support me, was just too heartbreaking.
At work, I sent out an email. It had all the facts and also asked for space and patience. It went to my team, the HR leadership, the leaders at work that I directly support. Although I was not worried about privacy or afraid of people knowing, I was afraid of how I would respond. People were kind, supportive and caring - but that brought me to my knees. I could not be professional and strong, when people were worried about me. I was worried too, scared for me, but even more I was scared and worried about my husband, my kids, my extended family. The tears were so close to the surface, it made it hard to think about anything except work. While I was in that professional space, I could be there and be myself. When it became personal, all my deepest fears came right to the surface.
It took a few weeks of doctors appointments, research, reading and just being with the
diagnosis before I settled in, accepted the cancer and became at peace with this new me. I am not cancer, I am still Julie. This has happened to me, but it does not define me, I am still my same old self. I can't change the diagnosis, but I can choose how to approach this journey. I did not deserve this, I did not do anything to make this happen. As my surgeon told me, this type of cancer is random. Random. At first that was unsettling, but now there is some comfort in knowing that it could really just be random.
So, I am going into my surgery calm, at peace and ready to move through cancer treatment without hurt, blame or anger, but with love, peace and acceptance. I know I am strong and I know I am willing to do everything to survive. The path to healing is through love, support and caring. I have so much support from so many people. I have all the love in my heart for my family, friends and everyone with me in this journey. That is all I need....that is all that really matters. Thank you all for your love.
Wednesday, April 30, 2014
My Science Lesson
Once you have a diagnosis, like cancer, you find that you need to learn a new language, a new culture and, most of all, become a junior scientist. The first appointment with my cancer surgeon was like a visit to cancer school.
I really like my surgeon and the care system at Swedish hospital. I was taken by her our very first meeting - she was warm, calm and reassuring. One of the first things she did was hand me a binder full of information about all that lies ahead - the process, procedures, support resources, and more. Then she handed me my pathology report and my science lesson began. With compassion and grace she explained to me what they know about my cancer. Here is what I have:
I am very lucky this was caught early. It happened to be in an area my previous doctor was watching because I had a cyst nearby. When I went in for a follow-up appointment to check on the cyst, they noted that the cyst was gone but nearby was some suspicious tissue. The tissue had not shown up on a mammogram, but it turned out to be cancerous when they biopsied it.
The bad news is that this is an aggressive cancer, with somewhat high risk for recurrence. This means that even though I have opted for a mastectomy, I cannot avoid chemotherapy. I also will likely be on a hormone therapy, like tamoxifen, for several years after I complete chemotherapy. I won't know the duration or type of chemotherapy I face, until we know if the cancer has spread to my lymph nodes.
So, now I can speak cancer and I am on my way to being a junior cancer scientist.
I really like my surgeon and the care system at Swedish hospital. I was taken by her our very first meeting - she was warm, calm and reassuring. One of the first things she did was hand me a binder full of information about all that lies ahead - the process, procedures, support resources, and more. Then she handed me my pathology report and my science lesson began. With compassion and grace she explained to me what they know about my cancer. Here is what I have:
- Infiltrating ductal carcinoma approximately 2cm (caught early)
- High grade and high mitotic rate (this is bad, fast growing means it can spread aggressively)
- ER and PR positive (this is good, it means it will respond to hormonal therapy)
- HER2 negative (some therapy won't work, but lower risk of recurrence)
- Ki-67 high proliferation (high risk of recurrence)
I am very lucky this was caught early. It happened to be in an area my previous doctor was watching because I had a cyst nearby. When I went in for a follow-up appointment to check on the cyst, they noted that the cyst was gone but nearby was some suspicious tissue. The tissue had not shown up on a mammogram, but it turned out to be cancerous when they biopsied it.
The bad news is that this is an aggressive cancer, with somewhat high risk for recurrence. This means that even though I have opted for a mastectomy, I cannot avoid chemotherapy. I also will likely be on a hormone therapy, like tamoxifen, for several years after I complete chemotherapy. I won't know the duration or type of chemotherapy I face, until we know if the cancer has spread to my lymph nodes.
So, now I can speak cancer and I am on my way to being a junior cancer scientist.
Tuesday, April 29, 2014
Hearing "The News"
I had no idea how I would take news like this. What do you do when someone tells you; "you have cancer"? What happens to your safe, happy picture of your life when you hear news like this?
I was at work. It was an especially busy day, because I was leaving early to pick up my two best friends from college at the airport. That day was the start of our annual roommates weekend. It was April 3rd. I had just had a biopsy two days earlier, but I was sure it was nothing. How could it be anything else? The call was supposed to be a relief, something we would talk about during our weekend together. I was not prepared for hearing something that would both ruin my special weekend and then impact almost everything in my life.
When the nurse said those words, I went numb. I know she kept talking, explaining what would happen next, because I wrote it all down. But I wasn't there... I did not hear a thing. I was somewhere else, where bad things did not happen to people like me. I thanked her, hung up the phone and went on with my day. I had no time for this, I had to get finished with work so that I could be at the airport on time. It never even occurred to me to call my husband or family - that would make it all real and true, I had no time for that today.
Being an HR Director, I am very skilled and experienced in the art of compartmentalizing information. It is how we, in HR, keep information confidential, maintain integrity and treat people with respect, despite having information about what may be happening to their jobs, their organization or other difficult changes that may impact them. So that is what I did with my cancer news - set it aside until I was ready to actually face the news.
I picked up my friends, laughed, and hugged them. We shared stories and updated each other on our lives. We got to my new house and I showed them around with my husband. No one, not even my husband, Joe, had any idea that I had just heard the worse news I could hear about my health. For that last evening, I wanted desperately to be normal, healthy and happy. I did not want to have cancer.
After my friends, Cindy and Diane, headed happily to bed, I sat in the hot tub with my husband of almost 30 years. Under the beautiful night sky, I took a deep breath and quietly broke his heart. He did not hold back, he wept openly. He instantly felt every emotion that I had been carefully holding back all day long. It was time for me to face the truth, I have cancer.
I was at work. It was an especially busy day, because I was leaving early to pick up my two best friends from college at the airport. That day was the start of our annual roommates weekend. It was April 3rd. I had just had a biopsy two days earlier, but I was sure it was nothing. How could it be anything else? The call was supposed to be a relief, something we would talk about during our weekend together. I was not prepared for hearing something that would both ruin my special weekend and then impact almost everything in my life.
When the nurse said those words, I went numb. I know she kept talking, explaining what would happen next, because I wrote it all down. But I wasn't there... I did not hear a thing. I was somewhere else, where bad things did not happen to people like me. I thanked her, hung up the phone and went on with my day. I had no time for this, I had to get finished with work so that I could be at the airport on time. It never even occurred to me to call my husband or family - that would make it all real and true, I had no time for that today.
Being an HR Director, I am very skilled and experienced in the art of compartmentalizing information. It is how we, in HR, keep information confidential, maintain integrity and treat people with respect, despite having information about what may be happening to their jobs, their organization or other difficult changes that may impact them. So that is what I did with my cancer news - set it aside until I was ready to actually face the news.
I picked up my friends, laughed, and hugged them. We shared stories and updated each other on our lives. We got to my new house and I showed them around with my husband. No one, not even my husband, Joe, had any idea that I had just heard the worse news I could hear about my health. For that last evening, I wanted desperately to be normal, healthy and happy. I did not want to have cancer.
After my friends, Cindy and Diane, headed happily to bed, I sat in the hot tub with my husband of almost 30 years. Under the beautiful night sky, I took a deep breath and quietly broke his heart. He did not hold back, he wept openly. He instantly felt every emotion that I had been carefully holding back all day long. It was time for me to face the truth, I have cancer.
Sunday, April 27, 2014
My cancer story
I have always wanted to write, but this is not the story I expected to tell. I wanted to share stories about my work as an HR Director, the challenges of leadership, what I have experienced as a woman in the world of business. Or maybe I would share stories about my family and the challenges of raising three children, funny things, slices of life. Never in my all my thoughts about writing did I expect to be sharing my journey through cancer. That was not ever part of my plan.
But, here I am and so here we go. My intention is to have a place to share what is going on with me through this process with family and friends . I need to have a way to express myself and tell the story of what is happening to me. My hope is that writing helps both my supporters and me, to understand this all better. Not to make sense of cancer - because it does not make sense - but to make sense of the feelings and steps along the way.
This is a journey I did not want, one I did not choose. I know it will be hard, brutal, and take all the strength I have, but I intend to persevere and come through it all successfully. I can't afford to imagine other outcomes, I need to believe that I can do this. I will need the support, love, prayers and positive thoughts and energy of everyone I can get. Family, friends, colleagues, even strangers who happen onto this page. You are all invited along with me, as long as you are here with a positive spirit and hope.
But, here I am and so here we go. My intention is to have a place to share what is going on with me through this process with family and friends . I need to have a way to express myself and tell the story of what is happening to me. My hope is that writing helps both my supporters and me, to understand this all better. Not to make sense of cancer - because it does not make sense - but to make sense of the feelings and steps along the way.
This is a journey I did not want, one I did not choose. I know it will be hard, brutal, and take all the strength I have, but I intend to persevere and come through it all successfully. I can't afford to imagine other outcomes, I need to believe that I can do this. I will need the support, love, prayers and positive thoughts and energy of everyone I can get. Family, friends, colleagues, even strangers who happen onto this page. You are all invited along with me, as long as you are here with a positive spirit and hope.
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