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?

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.

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.

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.

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.

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