For those of you who have followed me through this journey, I thank you for all your love and support. As you may know, I have stopped posting on Caring Bridge (where you can still find my story and the whole process under Julie L Jensen). I have missed sharing these updates, so wanted to log in again and share that I plan to start posting a new blog in April.
April will mark my one year "cancerversary" I learned I had breast cancer on April 17, 2014. I am happy to share that I feel strong, I am done with official treatment (not counting 5 years of Femora), and back to work full time with full energy. Still, this is a process that forever changes you. I hope to explore reflections of those changes as well as musings on life in the new blog.
Stay tuned, I will share the site here when its opened. In the meantime, enjoy this season of new life and new beginnings. Happy Spring 2015!
Sunday, March 29, 2015
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.
Subscribe to:
Posts (Atom)