Sunday, May 15, 2011
Homeward bound
Just a quick update today: Mom went home this afternoon! She is much, much better with regard to the nausea and really-sick feeling. She was able to get up and shower with help yesterday and has been able to walk about the same amount as before with assistance and with her walker. She was happy to change into her going-home clothes this morning and to prepare to leave the hospital. Danny had a bunch of pillows to help situate mom in the car (she can't move that right leg much including bending it so it was tricky to trouble shoot how she'd feel best in the car). They did great and she texted me a bit ago that she was home, it was beautiful there and she was happy. Danny and Ellen have been working really hard on the land this year, as they always do, and it is exceptionally beautiful there lately. The house looks great and the gardens are breathtaking. I am sure it will be a peaceful place to recover. Starting tomorrow, we have our rotation of family/friend caregivers starting to come in to assist mom during the days while Dad works; he will cover the evenings/nights/mornings. Mom is in good spirits and continuing to focus on her physical recovery. Every day she's a little bit better and every baby step counts. She is being patient, listening to her body and maintaining her positive attitude. This isn't always easy given that she would love to just get up and run! But she will be on bedrest for another couple of weeks and her mobility may not be back to her baseline for a while after that. She's doing great at keeping perspective and we all celebrate all the progress she makes every day. There are simply no words to express how grateful we all are to have all of your support. Thank you.
Friday, May 13, 2011
Friday, May 13 - Up and Down
This blog site has been down for a few days and was in read-only format until just now. I guess they've fixed the bug and we're back in business so I'm posting the things that had been written over the last two days now. Many of you received this in email format this morning. . .
Briefly, Mom had made major strides on Wednesday and Thursday, really increasing her activity level (with help of friends/nurses/physical therapists and with a few handy devices including a walker). It has been awesome to see her up and about, regaining her strength and mobility little by little. (For more on those two days, see the post below).
The city was bathing in that great, golden glow as the sun rose this morning on my way in to see Mom. Turns out she had a much, much harder night last night. Up much of the night, sick to her stomach, generally not feeling well. We are thinking that much of this is related to a new pain medication that was started last night (and which has since been discontinued). It's been
a bit of a rough morning for her.
Dr. Powell has been out of town at meetings and such so she has been seen in person by the residents and one of Dr. Powell's colleagues. However, Dr. Powell did call this morning and had a good chat with Ellen (and somewhat with me as I got to participate with her on speaker phone). Essentially, she expressed her satisfaction with mom making great progress increasing her
activity and working to get the pain under control. She also thinks this bad night/morning last night is likely related to the medication and that all in all, mom is improving slowly but steadily on the right trajectory. She also had a really good heart to heart with her about not pushing to go home too soon. As Dr. Powell puts it, people often think that when they get released it means
they've achieved something great, they get an A+ or extra-credit or a sticker or something, but
in fact she won't be handing out stickers (what?!?!). She reinforced for mom that the hospital time is a time for her to continue to improve her strength and mobility with a lot of trained help around. Going home can sometimes actually be a setback and can be harder when suddenly you don't have the same amount/type of help, etc. So. . . she really encouraged her to readjust her expectations, to not feel like a failure if she's in the hospital into next week, but to really take advantage of being here, to focus on using this time to find a pain-control regimen that really works and to use the help here to work on mobility. So. . .mom is working on readjusting her expectations and being gentle with herself.
She did a great job with the physical therapist this morning, walking with the walker and practicing getting in and out of a chair and bed. She's able to bend her knee about a centimeter but still has very limited mobility in her leg so all of these things- getting out of bed, in bed, walking- are very hard. The thought at this time is that these things should recover completely but it will likely take quite some time. All the activity this morning took a lot out of her and she's pretty exhausted. Still feeling a fair amount of pain, still sick to her stomach and more fragile today so trying to get the rest she needs to keep on the recuperation track. We're encouraging her to take it pretty easy, although she will be getting in and out of bed a lot more today. Ellen is
keeping a positive, relaxed attitude despite the difficult night and morning.
While she's not up for visitors today, please do keep all those great healing thoughts coming her way. They help more than you can know.
Briefly, Mom had made major strides on Wednesday and Thursday, really increasing her activity level (with help of friends/nurses/physical therapists and with a few handy devices including a walker). It has been awesome to see her up and about, regaining her strength and mobility little by little. (For more on those two days, see the post below).
The city was bathing in that great, golden glow as the sun rose this morning on my way in to see Mom. Turns out she had a much, much harder night last night. Up much of the night, sick to her stomach, generally not feeling well. We are thinking that much of this is related to a new pain medication that was started last night (and which has since been discontinued). It's been
a bit of a rough morning for her.
Dr. Powell has been out of town at meetings and such so she has been seen in person by the residents and one of Dr. Powell's colleagues. However, Dr. Powell did call this morning and had a good chat with Ellen (and somewhat with me as I got to participate with her on speaker phone). Essentially, she expressed her satisfaction with mom making great progress increasing her
activity and working to get the pain under control. She also thinks this bad night/morning last night is likely related to the medication and that all in all, mom is improving slowly but steadily on the right trajectory. She also had a really good heart to heart with her about not pushing to go home too soon. As Dr. Powell puts it, people often think that when they get released it means
they've achieved something great, they get an A+ or extra-credit or a sticker or something, but
in fact she won't be handing out stickers (what?!?!). She reinforced for mom that the hospital time is a time for her to continue to improve her strength and mobility with a lot of trained help around. Going home can sometimes actually be a setback and can be harder when suddenly you don't have the same amount/type of help, etc. So. . . she really encouraged her to readjust her expectations, to not feel like a failure if she's in the hospital into next week, but to really take advantage of being here, to focus on using this time to find a pain-control regimen that really works and to use the help here to work on mobility. So. . .mom is working on readjusting her expectations and being gentle with herself.
She did a great job with the physical therapist this morning, walking with the walker and practicing getting in and out of a chair and bed. She's able to bend her knee about a centimeter but still has very limited mobility in her leg so all of these things- getting out of bed, in bed, walking- are very hard. The thought at this time is that these things should recover completely but it will likely take quite some time. All the activity this morning took a lot out of her and she's pretty exhausted. Still feeling a fair amount of pain, still sick to her stomach and more fragile today so trying to get the rest she needs to keep on the recuperation track. We're encouraging her to take it pretty easy, although she will be getting in and out of bed a lot more today. Ellen is
keeping a positive, relaxed attitude despite the difficult night and morning.
While she's not up for visitors today, please do keep all those great healing thoughts coming her way. They help more than you can know.
Thursday May 12 - On the move
Today is Thursday, hospital day four and postoperative day three for Ellen. A quick update on things:
Yesterday mom worked with physical therapy in the morning which was a huge feat- she was able to get out of bed with a lot of very hard work but this caused significant pain and tears. She managed to get some rest in the midst of the traffic of nurses, visitors, physical therapist and doctors coming in and out of the room. In the afternoon, my dad Danny was there (as he is every day after school) and Sky came along yesterday, as well. With their help, she got out of bed and walked not once, but twice! She used the techniques she learned from the physical therapist and used a walker; although it took a great deal of effort and some discomfort, she did really well. The first walk was a few feet and the second one was to the door and back (about 10 feet each direction). I wasn’t there to witness either of these outings but heard about it in excited text messages from the three of them! What a great team! After a big day, mom slept well all night long. (I would say she slept like a baby, but as the parent of a baby, those words seem ill fitting to express the fact that she actually slept soundly through the night.)
This morning was a gorgeous morning in San Francisco- big clouds over the ocean and through the bay but golden sunshine lit up the city proper. Mom and I had a mellow breakfast early this morning and then the occupational therapist came by to help her with some equipment and skills to make moving a little easier. Getting in and out of bed remains the hardest part by far. With the occupational therapist, she was able to get out of bed, stand up and walk with her walker a few feet. She can’t (and isn’t allowed to) bend over so they practiced how to get dressed using a grasping device (think of the sort of thing used to pick up trash on the beach- super useful!), practiced how to position herself to help herself sit up and did some trouble shooting as to how to help her leg swing over the side of the bed. As of right now, she needs help with the latter both for getting in and out of bed, but she is making major progress in my opinion. Around late morning after a little dozing, she was ready for another walk and was able to direct me as to how to help support her efforts at getting out of bed. She did an initial short walk and then decided to extend it, to walk to the hallway and look out the big hallway windows at the glorious day. She did great and Lindy, Suni and I were thrilled to witness her making this progress. As she was making her way back to bed, in walked the physical therapist! So they spent a bit more time practicing some transferring skills in and out of seated positions. By the end of that, she was pretty exhausted and in a fair amount of discomfort. As I left, she was going to rest a little and then have some lunch.
We will continue to update you all here on the blog. Your love, support, faith in and encouragement of Ellen are so incredibly appreciated by my dad, my brother, my grandma, me and our families. All of your sentiments- be they comments here, email, phone calls, texts or telepathic messages mean a lot to us and really help all of us right now. We are blessed to know so many thoughtful, supportive friends. Thank you.
Wednesday, May 11, 2011
Postoperative day two - morning update from Sierra
As Ellen says, "Dear Blog Friends". . .
It is Wednesday morning - a cool, gray but beautiful morning in San Francisco. I arrived a little after 6:30 to be with mom and the residents were examining and talking with her. She was wide awake and in good spirits when I walked in and told me that she had almost texted me in the middle of the night to share her good news- she can move her leg a teeny, tiny bit! While this may not sound like much, this is major progress and, while she still has quite a ways to go, this initial step in the right direction (truly no pun intended) is very exciting. She was able to move her leg a few inches back and forth and can passively move it up and down. Her pain is still present, particularly with active flexing or extending of the leg, but much more under control with her current medication regimen. Honestly, seeing her simply shift positions in the bed on her own was awesome. These small movements are things that most of us don't even consciously think about or realize that we are taking for granted. It is truly a blessing to be able to move our muscles and power our bodies through the world.
Today a physical therapist will see her; she is anxious to get a little more mobility and maybe to even sit up with her legs over the side of the bed. We'll all be pulling for her (while also gently encouraging her to take it slow and listen to her body).
Thank you for all the notes here and in email. It has really brightened Ellen's spirits to hear from folks. In her room here, she has a few vases of beautiful rhododendrons that Danny brought in from their beautiful gardens, some orchids and a bunch of photos of family surrounding her. The sun shines in for much of the day most days such that the room is filled with light. While no one ever wants to be a patient in the hospital, it is fitting that Ellen's room would be filled with beauty and brightness.
I know she is very much looking forward to improving enough to go home and she is hopeful that this will happen somewhat soon; I think it will still be a few more days here at the least . Once at home, she will still be needing help for a few weeks especially during the days while Danny is at work. Even as her mobility improves here little by little, she has a long recovery ahead and she is on strict orders to be mostly on bedrest for 3-4 weeks, to not bend, squat, lift, not walk much, etc. . . meaning no cooking, dishes, gardening, exercising, lifting up her grandbaby, etc. We will keep you all posted as to when she'll be heading home. I'll be trying to coordinate a calendar of folks who have time to come hang out in the house for part of a day here or there in the coming weeks, to be available to lend a hand if she needs it and to simply be an able-bodied presence while she rests and recovers.
We'll continue to update you on things here. Hope that you all have a wonderful day wherever you are. Mom is sleeping now. . . Here's hoping that her pain remains well controlled, that she continues to rest a lot, to eat well and that she regains her strength and mobility little by little. Taking things one day at a time; that's all any of us can really do.
Sierra
It is Wednesday morning - a cool, gray but beautiful morning in San Francisco. I arrived a little after 6:30 to be with mom and the residents were examining and talking with her. She was wide awake and in good spirits when I walked in and told me that she had almost texted me in the middle of the night to share her good news- she can move her leg a teeny, tiny bit! While this may not sound like much, this is major progress and, while she still has quite a ways to go, this initial step in the right direction (truly no pun intended) is very exciting. She was able to move her leg a few inches back and forth and can passively move it up and down. Her pain is still present, particularly with active flexing or extending of the leg, but much more under control with her current medication regimen. Honestly, seeing her simply shift positions in the bed on her own was awesome. These small movements are things that most of us don't even consciously think about or realize that we are taking for granted. It is truly a blessing to be able to move our muscles and power our bodies through the world.
Today a physical therapist will see her; she is anxious to get a little more mobility and maybe to even sit up with her legs over the side of the bed. We'll all be pulling for her (while also gently encouraging her to take it slow and listen to her body).
Thank you for all the notes here and in email. It has really brightened Ellen's spirits to hear from folks. In her room here, she has a few vases of beautiful rhododendrons that Danny brought in from their beautiful gardens, some orchids and a bunch of photos of family surrounding her. The sun shines in for much of the day most days such that the room is filled with light. While no one ever wants to be a patient in the hospital, it is fitting that Ellen's room would be filled with beauty and brightness.
I know she is very much looking forward to improving enough to go home and she is hopeful that this will happen somewhat soon; I think it will still be a few more days here at the least . Once at home, she will still be needing help for a few weeks especially during the days while Danny is at work. Even as her mobility improves here little by little, she has a long recovery ahead and she is on strict orders to be mostly on bedrest for 3-4 weeks, to not bend, squat, lift, not walk much, etc. . . meaning no cooking, dishes, gardening, exercising, lifting up her grandbaby, etc. We will keep you all posted as to when she'll be heading home. I'll be trying to coordinate a calendar of folks who have time to come hang out in the house for part of a day here or there in the coming weeks, to be available to lend a hand if she needs it and to simply be an able-bodied presence while she rests and recovers.
We'll continue to update you on things here. Hope that you all have a wonderful day wherever you are. Mom is sleeping now. . . Here's hoping that her pain remains well controlled, that she continues to rest a lot, to eat well and that she regains her strength and mobility little by little. Taking things one day at a time; that's all any of us can really do.
Sierra
Monday, May 9, 2011
brief update from Sierra
My mom Ellen's surgery was this morning at 8:45; she was out of the operating at noon. Dr. Powell spoke with us afterward and said that she 'felt good' about the surgery. It was a fairly big surgery and mom has been in a lot of pain today with the slightest movements. She is listening to her body and taking medication as needed. She said "I've used more drugs today than I ever have in my life"! She's dozed on and off this afternoon which is good- letting herself rest as she begins the recuperation and recovery process. We were in the recovery room for a little over 4 hours waiting for a room on the 'regular' floor. She is now in her private room. Danny, Annie and I have been sitting with her this evening. She is now sitting part of the way up (she's on bed rest for a couple of days) and eating a little dinner with my dad. It's meant a great deal to her and to all of us to receive so many messages of love and support throughout the day.
Despite the pain she's been in, she remains the Ellen you all know- while drowsy from the anesthesia in the post-op recovery area she asked me many, many times how I was doing, if I was okay, if I was too hot/too cold. . . :) She is always taking care of others and always concerned about others. We will continue to return the sentiment, to share with her the love, nurturing, encouragement, positivity and support that she so wholeheartedly shares with everyone else.
Despite the pain she's been in, she remains the Ellen you all know- while drowsy from the anesthesia in the post-op recovery area she asked me many, many times how I was doing, if I was okay, if I was too hot/too cold. . . :) She is always taking care of others and always concerned about others. We will continue to return the sentiment, to share with her the love, nurturing, encouragement, positivity and support that she so wholeheartedly shares with everyone else.
Sunday, May 8, 2011
Mothers Day 2011
Hello Blog friends.
It has been a long time since I have written anything here.
Sadly, I had a recurrence of Melanoma. I had a small surgery the beginning of March, but the margins were not clear. I spent over a month exploring all options from traditional Western Medicine to many non Western medicine options. I was challenged in charting a course of action until I had an appointment with a Melanoma specialist, Dr. Daud at UCSF. I made a commitment to myself that whatever direction I chose to take I would embrace fully. After the consultation I chose to have further surgery. After the surgery I will do a new treatment for melanoma.
Monday May 9th is surgery day. I will be in San Francisco again, with Dr. Powell. I am confidant that I have the best Dr. I can have for this procedure. So, San Francisco Kaiser, where I was born, will be my home much of this next week. Sierra or Sky (my wonderful children) will be updating this site during the next week or two. My family and I appreciate all of your love, support, and best wishes as I know it helps in the healing. I am blessed to have each of you as a special person in my life.
It has been a long time since I have written anything here.
Sadly, I had a recurrence of Melanoma. I had a small surgery the beginning of March, but the margins were not clear. I spent over a month exploring all options from traditional Western Medicine to many non Western medicine options. I was challenged in charting a course of action until I had an appointment with a Melanoma specialist, Dr. Daud at UCSF. I made a commitment to myself that whatever direction I chose to take I would embrace fully. After the consultation I chose to have further surgery. After the surgery I will do a new treatment for melanoma.
Monday May 9th is surgery day. I will be in San Francisco again, with Dr. Powell. I am confidant that I have the best Dr. I can have for this procedure. So, San Francisco Kaiser, where I was born, will be my home much of this next week. Sierra or Sky (my wonderful children) will be updating this site during the next week or two. My family and I appreciate all of your love, support, and best wishes as I know it helps in the healing. I am blessed to have each of you as a special person in my life.
Monday, November 2, 2009
Finished with part one, now part two
Friday was my last day of IV interferon. I no longer have to go to Kaiser daily. It turned out that Friday was different than I imagined it would be. I had an appointment with my oncologist. We reviewed part two, what to expect and how I am right now. I questioned the healing of one of my surgery incisions, the one where the lymph node was removed. He immediately referred me to a surgeon as it was a bit infected. The surgeon opened up. The pain killer he gave me did not work sufficiently and it was one of the most painful experiences of my life! Nancy was with me at Kaiser. I told he this is the worst day of my life. She assured me it was not....but I had a hard time agreeing with her. We then went to the infusion room for my last treatment and to learn to give myself injections (part two). I was greeted by a huge bouquet of balloons from the Crones (my precious most wonderful group of women friends of which I could write a book about!). It was a full day. Unfortunately the celebration of being done with the infusions was dampened by the painful incision.
A new unexpected challenge. The surgery site has to be kept open so it will heal from the inside out. It previously had healed at the skin, but inside it had not. So, Danny has to remove packing daily and put new packing in it. I guess the nerves are all jumbled up from surgery as this process is absolute torture! I know this too will pass. I feel like my celebration of finishing the infusions was robbed. I also know this is all very minor compared to what most of the people who were being treated in the infusion center are dealing with. My positive outlook is being challenged.
Sunday night I gave myself my first injection. Another accomplishment. I will be doing injections on Sunday, Tuesday and Thursday. So healing days will be Monday, Wednesday and Friday. I am taking one day at a time and will see how all of this unfolds.
Today, Monday, I am going to try to stay relatively still. Hopefully my wound will benefit from little movement and will heal.
I have been all consumed with healing from surgery and the month of intense interferon I have not even begun the work that is important to me. What does this whole experience mean to me? This has been a life changing event. Coming to answers is part of what I hope to do in part two. For right now I am back to focusing on the surgery site healing and regaining my physical and emotional strength. I know there is overwhelming challenges in the world and I feel it is important to be conscious of this. In my little world I have so much to be joyful for and that is my focus. Joy and love give me strength.
A new unexpected challenge. The surgery site has to be kept open so it will heal from the inside out. It previously had healed at the skin, but inside it had not. So, Danny has to remove packing daily and put new packing in it. I guess the nerves are all jumbled up from surgery as this process is absolute torture! I know this too will pass. I feel like my celebration of finishing the infusions was robbed. I also know this is all very minor compared to what most of the people who were being treated in the infusion center are dealing with. My positive outlook is being challenged.
Sunday night I gave myself my first injection. Another accomplishment. I will be doing injections on Sunday, Tuesday and Thursday. So healing days will be Monday, Wednesday and Friday. I am taking one day at a time and will see how all of this unfolds.
Today, Monday, I am going to try to stay relatively still. Hopefully my wound will benefit from little movement and will heal.
I have been all consumed with healing from surgery and the month of intense interferon I have not even begun the work that is important to me. What does this whole experience mean to me? This has been a life changing event. Coming to answers is part of what I hope to do in part two. For right now I am back to focusing on the surgery site healing and regaining my physical and emotional strength. I know there is overwhelming challenges in the world and I feel it is important to be conscious of this. In my little world I have so much to be joyful for and that is my focus. Joy and love give me strength.
Saturday, October 24, 2009
Fatigue
Side affects to interferon are aches and pains like when you have the flu and fatigue. I have had both for the past 3 weeks. I am getting tired of feeling generally blah. For the first 2 1/2 weeks of treatment I was sleeping about 12 hours a night. I couldn't stay awake much past 7. This week I haven't been sleeping as well. The good part of sleeping has been sleeping through the pain. Now that I am not sleeping as well I tend to also feel more uncomfortable. The good news is that I have one more week of this intense treatment. I then go to the next level of treatment, which will be injections of more interferon 3 times a week. Hopefully the symptoms I have been experiencing will be reduced.
I am so grateful to all the angels who drive me to Kaiser. I continue to be touched deeply by the calls, cards, emails, flowers and good thoughts. You all give me strength.
I am so grateful to all the angels who drive me to Kaiser. I continue to be touched deeply by the calls, cards, emails, flowers and good thoughts. You all give me strength.
Saturday, October 10, 2009
Hooray, one week complete!
Monday was my first day of treatment. Monday night was a nightmare. I was miserable. I was terrified of having to do this for 19 more days.
I am generally a planner. I schedule my time to be efficient and productive. This experience is challenging me to stay present and not to think much about the future. Live for now. Be here now.
Thankfully each day got better this week. Even with each day being better I find around 2 in the afternoon I start to get anxious wondering what tonight will be like. I am 25% done with the intense first month and I now feel confidant I can handle this.
My daily vision is if there are any unwanted satellite cells in my body that this interferon treatment is going to confuse the heck out of those cells and they are going to fall apart and leave.
I seem to be having a typical reaction to the interferon. I feel a bit achy, sore muscles, low energy and a general blah feeling. It isn't fun, but it is manageable.
All of my caregivers at Kaiser have been outstanding. My oncologist, Niccoli, is the father of 3 wonderful children all who Danny taught. Each year Danny has a special connection with a few of the families he teaches and Niccoli's family is one of those. It is extra special to have his support for me and for Danny.
I have the weekend off. I am looking forward to a terrific Sunday and fantastic Monday (at least until 3:30).
I am generally a planner. I schedule my time to be efficient and productive. This experience is challenging me to stay present and not to think much about the future. Live for now. Be here now.
Thankfully each day got better this week. Even with each day being better I find around 2 in the afternoon I start to get anxious wondering what tonight will be like. I am 25% done with the intense first month and I now feel confidant I can handle this.
My daily vision is if there are any unwanted satellite cells in my body that this interferon treatment is going to confuse the heck out of those cells and they are going to fall apart and leave.
I seem to be having a typical reaction to the interferon. I feel a bit achy, sore muscles, low energy and a general blah feeling. It isn't fun, but it is manageable.
All of my caregivers at Kaiser have been outstanding. My oncologist, Niccoli, is the father of 3 wonderful children all who Danny taught. Each year Danny has a special connection with a few of the families he teaches and Niccoli's family is one of those. It is extra special to have his support for me and for Danny.
I have the weekend off. I am looking forward to a terrific Sunday and fantastic Monday (at least until 3:30).
Wednesday, September 30, 2009
New Beginning
I am really recovering from the surgery. I walked about 1.5 miles the other day. Yeah, a big accomplishment! I walk slow...but I can do it!! I am physically feeling almost normal again. So it is very strange that I continue to have medical challenges.
I made the choice to use the only treatment Western Medicine has to offer someone in my situation. Treatment begins on Monday. This October will be different than any other in my life. Monday through Friday I will be at Kaiser from about 3:30 - 5:30 for treatment. The plan is to get treatment in the late afternoon and go home and sleep off any side affects I may have. During the day I will hopefully have energy to exercise, meditate, spend time with those I love and doing activities I love. If there are any unwanted cells in my body, they will go away! My focus is to believe in heart and soul that this treatment is going to work for me!
I did this once before, except it was with radiation treatment. I believe in the power of the mind and the ability to help heal and not let the disease return. I did it once before and fully intend to do this again.
I have had a wonderful life and I have a wonderful life,. Still I am sad that I have this chapter I am currently living. All the gestures of love, cards, encouraging words, support for me, and for my family is what gives me strength each day. The appreciation and gratitude I feel cannot be fully expressed.
I made the choice to use the only treatment Western Medicine has to offer someone in my situation. Treatment begins on Monday. This October will be different than any other in my life. Monday through Friday I will be at Kaiser from about 3:30 - 5:30 for treatment. The plan is to get treatment in the late afternoon and go home and sleep off any side affects I may have. During the day I will hopefully have energy to exercise, meditate, spend time with those I love and doing activities I love. If there are any unwanted cells in my body, they will go away! My focus is to believe in heart and soul that this treatment is going to work for me!
I did this once before, except it was with radiation treatment. I believe in the power of the mind and the ability to help heal and not let the disease return. I did it once before and fully intend to do this again.
I have had a wonderful life and I have a wonderful life,. Still I am sad that I have this chapter I am currently living. All the gestures of love, cards, encouraging words, support for me, and for my family is what gives me strength each day. The appreciation and gratitude I feel cannot be fully expressed.
Friday, September 18, 2009
Decsion making
The past 9 days have been filled with research, learning about my possible options in regards to possible treatment for stage 3c melanoma. The educational process has been all consuming. Sierra and Alan have also spent numerous hours on this too. Knowledge is power. I have had the love and support from family and friends which is helping me make decisions too.
After exploring all the clinical trials in the United States for stage 3 melanoma, it has come down to 2 possible options in San Francisco. One trial is for something that has not shown to be successful for any other kind of cancer. The other trial is for something that is showing the most success of anything in regards to melanoma in trials to date, but 50% of the people receive a placebo and no treatment. After talking with both of my Dr.'s, family members and a few friends I am currently thinking on not doing the trials.
I am also clear that I want to do something. I would probably have a lot of regrets if I didn't try something and the melanoma came back. It looks like I will be doing the only FDA approved treatment of interferon. Actually the approved treatment is for a year. There are trials of doing only one month. These options are still undecided.
Yesterday, I saw Dr. Powell. She really understands me. She said to not dwell on the statistics. Each person is a unique test tube. The statistic for each person is either 100% or 0%. Live your life like the surgery was 100% successful and at the same time treat the situation with what is available and believe you are the person the treatment will be 100% successful. She also emphasized that because of my situation, be sure to celebrate every thing I can possibly celebrate. (Of course this is true for everyone,) How interesting I named the blog Ellen's Celebration of Life!
I have been more sad, serious and a bit depressed the past nine days than maybe anytime in my life. I leave today for La Jolla. My intention is to get rejuvenated and return home with more energy for the next chapter.
As I continue making decisions I do my best to have Gratitude for my wonderful life, full of opportunity, and the best family and friends one can have!
After exploring all the clinical trials in the United States for stage 3 melanoma, it has come down to 2 possible options in San Francisco. One trial is for something that has not shown to be successful for any other kind of cancer. The other trial is for something that is showing the most success of anything in regards to melanoma in trials to date, but 50% of the people receive a placebo and no treatment. After talking with both of my Dr.'s, family members and a few friends I am currently thinking on not doing the trials.
I am also clear that I want to do something. I would probably have a lot of regrets if I didn't try something and the melanoma came back. It looks like I will be doing the only FDA approved treatment of interferon. Actually the approved treatment is for a year. There are trials of doing only one month. These options are still undecided.
Yesterday, I saw Dr. Powell. She really understands me. She said to not dwell on the statistics. Each person is a unique test tube. The statistic for each person is either 100% or 0%. Live your life like the surgery was 100% successful and at the same time treat the situation with what is available and believe you are the person the treatment will be 100% successful. She also emphasized that because of my situation, be sure to celebrate every thing I can possibly celebrate. (Of course this is true for everyone,) How interesting I named the blog Ellen's Celebration of Life!
I have been more sad, serious and a bit depressed the past nine days than maybe anytime in my life. I leave today for La Jolla. My intention is to get rejuvenated and return home with more energy for the next chapter.
As I continue making decisions I do my best to have Gratitude for my wonderful life, full of opportunity, and the best family and friends one can have!
Tuesday, September 8, 2009
A lot to know about Satellite cells
The journey continues. Another trip to San Francisco today. Sierra and I met with a medical oncologist, Dr. Liu. He reiterated again the surgery was a success. It is good the lymph nodes were negative and that the margins were clear.
One detail that was on the pathology report was there were satellite cells, which basically is a microscopic spread of melanoma which had been removed. The concern is whether there are more microscopic cells in my body we don't know about. For this reason Dr. Liu highly recommends further treatment, either a clinical trial, or interferon for a year! We aren't sure there is a clinical trial that I am eligible for. The course of interferon is an aggressive treatment.
I knew of the possibility of needing interferon, but I was so hopeful that I wouldn't need to continue with my treatment that I really didn't think about it. Wow, this is a lot of new information to digest. More tears today. I am healing well from the surgery, better every day, but sad that it looks like the healing will be more involved than just the surgery.
As I am digesting all of this, the plan right now is that Danny and I will meet with Dr. Liu on September 25th. At that visit we will make the plan of attack. Most likely Dr. Liu will manage my case and I will be treated in Santa Rosa. This is if there is no clinical trial for me. The first month will probably be the most challenging. I hope and pray for great success. I envision that if there are any satellite cells that they will be destroyed and all that is left in my body are healthy cells which will give me a full life.
Alan's ( my son in love) parents live in St. Croix (part of the US Virgin Islands). They offered for me to go there to heal from my surgery. Honestly the travel would be too much for me, but it was an awesome offer! Nancy came up with a brilliant idea for us to go to La Jolla for a few days. We will be going there for 5 days. I am so glad we planned this trip as I am not sure if I will want to travel much during the next year. Dr. Liu already told me after my treatment, if I can, go to Maui. He has a beautiful photo of a sunset in Maui in his office. So I think I will make it a goal to feel fantastic in a year (maybe a year and half, as I read sometimes it takes up to 6 months after taking interferon to have your normal energy back) and celebrate somewhere exotic.
For now, my focus is on healing and perfect health. I am thrilled that I am healing (even if it seems slow). I have a new fight to fight and I have every intention of winning! I plan on celebrating this life for many, many years!
xoxoxo
Ellen
One detail that was on the pathology report was there were satellite cells, which basically is a microscopic spread of melanoma which had been removed. The concern is whether there are more microscopic cells in my body we don't know about. For this reason Dr. Liu highly recommends further treatment, either a clinical trial, or interferon for a year! We aren't sure there is a clinical trial that I am eligible for. The course of interferon is an aggressive treatment.
I knew of the possibility of needing interferon, but I was so hopeful that I wouldn't need to continue with my treatment that I really didn't think about it. Wow, this is a lot of new information to digest. More tears today. I am healing well from the surgery, better every day, but sad that it looks like the healing will be more involved than just the surgery.
As I am digesting all of this, the plan right now is that Danny and I will meet with Dr. Liu on September 25th. At that visit we will make the plan of attack. Most likely Dr. Liu will manage my case and I will be treated in Santa Rosa. This is if there is no clinical trial for me. The first month will probably be the most challenging. I hope and pray for great success. I envision that if there are any satellite cells that they will be destroyed and all that is left in my body are healthy cells which will give me a full life.
Alan's ( my son in love) parents live in St. Croix (part of the US Virgin Islands). They offered for me to go there to heal from my surgery. Honestly the travel would be too much for me, but it was an awesome offer! Nancy came up with a brilliant idea for us to go to La Jolla for a few days. We will be going there for 5 days. I am so glad we planned this trip as I am not sure if I will want to travel much during the next year. Dr. Liu already told me after my treatment, if I can, go to Maui. He has a beautiful photo of a sunset in Maui in his office. So I think I will make it a goal to feel fantastic in a year (maybe a year and half, as I read sometimes it takes up to 6 months after taking interferon to have your normal energy back) and celebrate somewhere exotic.
For now, my focus is on healing and perfect health. I am thrilled that I am healing (even if it seems slow). I have a new fight to fight and I have every intention of winning! I plan on celebrating this life for many, many years!
xoxoxo
Ellen
Friday, September 4, 2009
Happy Birthday!
Happy Birthday, Mom! Wishing you a wonderful day; may this next year be filled with an abundance of love, friendship, good health, strength, laughter, joy and endless blessings. I love you. See you tomorrow!
Friday, August 28, 2009
Hooray, good news
The surgery was definitely successful. Sierra says the pathology report was music to her ears. That made me happy! There is no cancer in the lymph nodes that were removed and the margins had no cancer. This is very good news. As to what is next, that is still a bit of a mystery. The tumor board will discuss my case next Friday, September 4 and I will see a medical oncologist on September the 8th. He too is new to Kaiser, coming from UCSF. Honestly, I wish I had all the answers now. Don't get me wrong though, I am glad to have the professionals all discussing my situation to be sure I get the best care that is possible. There is a good chance that the protocol will be that no further treatment is necessary than the surgery.
It has been a different day. I took a stronger pain killer for the drive to SF. I am very slow moving, slow thinking, and less emotional than normal. I am finding it a bit challenging to even write here in the blog.
Here are the highlights of the day:
Good news from Dr. Powell!!!!
Spending time with my dear friend Nancy who drove me to SF and back
Visiting my sister in law Lindy in her back yard in SF and getting about 20 movies from her to watch while I continue to recover. Dr. Powell says I have about 4 more weeks of this recovery business.
Going to the grocery store....I haven't been anywhere for almost two weeks and it was fun to be in a grocery store!
And to top it off to recieve a video made for me, from the people who I consider to be my friends that I love and respect at Watkins (the manufacturer of HotSpring Spas). I actually smiled, laughed and cried as I watched it.
Danny just walked into the house with fresh veges and fruit. We have a lot to celebrate!
My mom is home now. Next week I will be on my own at home while Danny is working. If you want to spend time with the squirrels and the birds, come and visit!
This blog is a great way to communicate to many people at one time, and it overwhelms me that I have wonderful people in my life that care! Believe me your caring touches me more deeply than you can ever know. Sending you all much much love!
It has been a different day. I took a stronger pain killer for the drive to SF. I am very slow moving, slow thinking, and less emotional than normal. I am finding it a bit challenging to even write here in the blog.
Here are the highlights of the day:
Good news from Dr. Powell!!!!
Spending time with my dear friend Nancy who drove me to SF and back
Visiting my sister in law Lindy in her back yard in SF and getting about 20 movies from her to watch while I continue to recover. Dr. Powell says I have about 4 more weeks of this recovery business.
Going to the grocery store....I haven't been anywhere for almost two weeks and it was fun to be in a grocery store!
And to top it off to recieve a video made for me, from the people who I consider to be my friends that I love and respect at Watkins (the manufacturer of HotSpring Spas). I actually smiled, laughed and cried as I watched it.
Danny just walked into the house with fresh veges and fruit. We have a lot to celebrate!
My mom is home now. Next week I will be on my own at home while Danny is working. If you want to spend time with the squirrels and the birds, come and visit!
This blog is a great way to communicate to many people at one time, and it overwhelms me that I have wonderful people in my life that care! Believe me your caring touches me more deeply than you can ever know. Sending you all much much love!
Wednesday, August 26, 2009
patience
Healing takes time.
I thought since I came home from the hospital fast I would miraculously be all better in a few days.
I now know that my job right now is to be patient and let the natural course of healing occur. My big culprit is a lot of swelling. If I stand for even five minutes I feel the difference. So, I have been spending most of the day laying down. (no walks in the flat yet...this will come soon I hope) This is different for me! I must say I am very lucky to have such a wonderful place to heal. The mornings have been cold and foggy, but the afternoons have been gorgeous. My afternoons have been spent laying on different chaise lounges under the trees, watching birds and squirrels play, reading books and visiting with people I love and cherish.
Danny and my mom have been nurturing me all day long. I am very lucky to have such great caregivers.
Friday will be a big day. Another drive to SF and in the rush hour this time. I expect to learn if surgery is all the treatment needed or if more decisions need to be made. I am actually okay with not knowing until Friday. I am preparing myself to accept what ever news I receive in the best way that I can.
I love visits, even if they tire me out. Friends and family are the core of my existence. Danny says that since I don't have many creative projects (unlike Danny who has endless creative projects) that loving my family and friends is my hobby. So here I am writing on this blog and sending love to all of you! Enjoy your day as each day is a miracle!
I thought since I came home from the hospital fast I would miraculously be all better in a few days.
I now know that my job right now is to be patient and let the natural course of healing occur. My big culprit is a lot of swelling. If I stand for even five minutes I feel the difference. So, I have been spending most of the day laying down. (no walks in the flat yet...this will come soon I hope) This is different for me! I must say I am very lucky to have such a wonderful place to heal. The mornings have been cold and foggy, but the afternoons have been gorgeous. My afternoons have been spent laying on different chaise lounges under the trees, watching birds and squirrels play, reading books and visiting with people I love and cherish.
Danny and my mom have been nurturing me all day long. I am very lucky to have such great caregivers.
Friday will be a big day. Another drive to SF and in the rush hour this time. I expect to learn if surgery is all the treatment needed or if more decisions need to be made. I am actually okay with not knowing until Friday. I am preparing myself to accept what ever news I receive in the best way that I can.
I love visits, even if they tire me out. Friends and family are the core of my existence. Danny says that since I don't have many creative projects (unlike Danny who has endless creative projects) that loving my family and friends is my hobby. So here I am writing on this blog and sending love to all of you! Enjoy your day as each day is a miracle!
Friday, August 21, 2009
4 days post op and doing great
I believe love and prayers in whatever form you do pray does heal. All of the love and prayers along with my strong spirit and excellent health helped me to get home quickly and is helping with my healing. Thank you, thank you, thank you. I am so grateful for all of your wonderful energy.
I am spending the bulk of my time in bed, resting, with some time in the fresh air too. My body is telling me what I can and need to do, yet my mind is challenging the body a bit. I am used to being active, but that just isn't a possibility right now.
Monday morning when I entered the hospital I was feeling in excellent physical shape, strong and healthy. I am not sure I would be home today if it weren't for my commitment to regular training the past few years. I now feel a stronger commitment to continue my training and to encourage others to do so as well. My upper body strength and my core strength are helping me all day long. I need that just to get in and out of bed.
My time in the hospital was as positive as it could be. I was so lucky to have Sierra by my side where generally patients don't have family members with them, both pre surgery and in recovery after surgery. And then I had my entire family with me after the surgery. I don't remember much about that night. Tuesday I stayed in bed all day. My intuition told me to rest and rest is what I did. Kaiser has a television station that has healing soft music with beautiful scenes from nature. I had the station on all day and dozed in and out and felt very peaceful. Wednesday morning I woke at 6 and again my intuition said, get up now, which I did. I knew I needed to start to move and get my body active again. It was good too as I was getting some fluid in the lungs. I told Danny I need to get strong and go home before I get sick in the hospital. So when my Dr. said I could probably go home in the evening I did everything I could to make it happen. Driving home was the most challenging time I've ever had in a car. I was miserable. I should have taken a stronger pain medication, but I never considered how sensitive I would be to every bump in the car. Again, my strength helped here. I spent as much time as I could holding my body off the seat, either pushing my legs to lift me, or holding onto the handle and pulling myself up off the seat.
It's great to be home. I am up for visits. I am up for movie recommendations. Next week I may be up for driving to the flat area of Kenwood and short walks. I've got my mom here this week. She is taking good care of me.
Thank you for the cards, the flowers, the love, the good thoughts, and especially for the support of my family. I know this has been a hard time for each person in a different way and your love has helped everyone.
I am spending the bulk of my time in bed, resting, with some time in the fresh air too. My body is telling me what I can and need to do, yet my mind is challenging the body a bit. I am used to being active, but that just isn't a possibility right now.
Monday morning when I entered the hospital I was feeling in excellent physical shape, strong and healthy. I am not sure I would be home today if it weren't for my commitment to regular training the past few years. I now feel a stronger commitment to continue my training and to encourage others to do so as well. My upper body strength and my core strength are helping me all day long. I need that just to get in and out of bed.
My time in the hospital was as positive as it could be. I was so lucky to have Sierra by my side where generally patients don't have family members with them, both pre surgery and in recovery after surgery. And then I had my entire family with me after the surgery. I don't remember much about that night. Tuesday I stayed in bed all day. My intuition told me to rest and rest is what I did. Kaiser has a television station that has healing soft music with beautiful scenes from nature. I had the station on all day and dozed in and out and felt very peaceful. Wednesday morning I woke at 6 and again my intuition said, get up now, which I did. I knew I needed to start to move and get my body active again. It was good too as I was getting some fluid in the lungs. I told Danny I need to get strong and go home before I get sick in the hospital. So when my Dr. said I could probably go home in the evening I did everything I could to make it happen. Driving home was the most challenging time I've ever had in a car. I was miserable. I should have taken a stronger pain medication, but I never considered how sensitive I would be to every bump in the car. Again, my strength helped here. I spent as much time as I could holding my body off the seat, either pushing my legs to lift me, or holding onto the handle and pulling myself up off the seat.
It's great to be home. I am up for visits. I am up for movie recommendations. Next week I may be up for driving to the flat area of Kenwood and short walks. I've got my mom here this week. She is taking good care of me.
Thank you for the cards, the flowers, the love, the good thoughts, and especially for the support of my family. I know this has been a hard time for each person in a different way and your love has helped everyone.
Wednesday, August 19, 2009
Homeward bound
Great news! Mom is home tonight in her own bed! She did great today, walking around the hospital hallways with Annie and me a few times, eating well and generally making great progress. By late afternoon the decision was made that everything was in order for her to go home earlier than expected. Danny drove down to the city after school today and took Mom and Annie back to Kenwood. A hot shower at home, homemade chicken soup and now settling into her own bed. . . Alan and I flew back to LA tonight; by phone she sounds tired and good. Sweet dreams!
Tuesday, August 18, 2009
A good day
Yesterday was quite a whirlwind of a day. A few memorable moments in addition to those that Sky so beautifully mentioned in his post:
The pre-op area nurse, Eva, who was wonderful and compassionate, showed Mom Kaiser's "CARE" television station with relaxation music and beautiful scenes of nature for soothing and meditation. We had that on in the pre-op area while all the final paperwork was being done, IV was being put in, etc. and she's had this station on in her room for much of today. After she was all prepared in the pre-op area, Dad, Annie and I (Sierra) were with her.
Dad arrived from his first morning of school with his new class with cards and a perfect, lavendar colored rose that his new students had brought in for mom! (He had sent a letter explaining why he'd be missing part of the first and second days of school and these thoughtful families reached out with support before even meeting any of us. Wow!)
We each received many text messages, voice mails and emails from so many of you who were then able to pass along the chain of healing as we had more information about how things had gone.
One thing we forgot to mention here was the good news that Dr. Powell gave us: the PET scan was negative (ie: clear). We were very, very happy to hear that!
Yesterday Mom re-read many of the cards that she received over the last week or so and it was wonderful to see how they made her smile. It was very special to be able to be all together, Dad, Annie, Sky and I, with mom in her room as she settled in last night. Dad stayed with her overnight and they both slept pretty well from what I understand.
Today Ellen is one step further on her journey of healing! She reports that today has been a good day. She's been resting on and off all day surrounded by love. Danny and Annie have been with her for most of the day. She's had a few other special visitors and has been nourished with delicious, home-cooked food from Lindy and Annie. Yum! Alan and I are on our way to visit with her this evening; Danny will stay the night with her again tonight before heading back to be with his new class tomorrow morning.
Tomorrow, the big step will be for her to get out of bed and start walking with the nurses. She's looking forward to that after a day of much needed, and well deserved, rest. Her voice has sounded stronger and stronger throughout the day. Currently, the estimates are that she'll be heading home on Thursday or Friday to continue her healing in Kenwood.
It has been truly amazing to be a witness to the amount of love and support Mom has. I know I speak for my whole family when I say how much it means to all of us to have all of you in our lives. Thank you! Let the healing continue!
The pre-op area nurse, Eva, who was wonderful and compassionate, showed Mom Kaiser's "CARE" television station with relaxation music and beautiful scenes of nature for soothing and meditation. We had that on in the pre-op area while all the final paperwork was being done, IV was being put in, etc. and she's had this station on in her room for much of today. After she was all prepared in the pre-op area, Dad, Annie and I (Sierra) were with her.
Dad arrived from his first morning of school with his new class with cards and a perfect, lavendar colored rose that his new students had brought in for mom! (He had sent a letter explaining why he'd be missing part of the first and second days of school and these thoughtful families reached out with support before even meeting any of us. Wow!)
We each received many text messages, voice mails and emails from so many of you who were then able to pass along the chain of healing as we had more information about how things had gone.
One thing we forgot to mention here was the good news that Dr. Powell gave us: the PET scan was negative (ie: clear). We were very, very happy to hear that!
Yesterday Mom re-read many of the cards that she received over the last week or so and it was wonderful to see how they made her smile. It was very special to be able to be all together, Dad, Annie, Sky and I, with mom in her room as she settled in last night. Dad stayed with her overnight and they both slept pretty well from what I understand.
Today Ellen is one step further on her journey of healing! She reports that today has been a good day. She's been resting on and off all day surrounded by love. Danny and Annie have been with her for most of the day. She's had a few other special visitors and has been nourished with delicious, home-cooked food from Lindy and Annie. Yum! Alan and I are on our way to visit with her this evening; Danny will stay the night with her again tonight before heading back to be with his new class tomorrow morning.
Tomorrow, the big step will be for her to get out of bed and start walking with the nurses. She's looking forward to that after a day of much needed, and well deserved, rest. Her voice has sounded stronger and stronger throughout the day. Currently, the estimates are that she'll be heading home on Thursday or Friday to continue her healing in Kenwood.
It has been truly amazing to be a witness to the amount of love and support Mom has. I know I speak for my whole family when I say how much it means to all of us to have all of you in our lives. Thank you! Let the healing continue!
Monday, August 17, 2009
The healing has begun!!!
From the beginning of today mom has had the visualization that the healing has begun. She was super blessed to have Sierra with her most of the day. Everyone here at Kaiser has been terrific. There were many delays because all of the caregivers seemed to be eating at the moment they were to be taking care of mom but she was okay with that because that meant that they were all happy and energized when they did show up. The surgery seems to have gone smoothly. Mom looks great and is resting in her own room at Kaiser. She currently has Danny, Sierra, Annie, and me (Sky) at her side as well as three nurses caring for her. Ellen is currently very comfortable. I think the pain Meds are doing what they are supposed to do. Hopefully mom will allow herself to be cared for and to have lots of healing energy time. She would prefer to have minimal visits tomorrow as Sierra has said tomorrow might be painful and emotional. Lotsof love to all. Will post more later. Enough typing on this lil iPhone for now.
Sunday, August 16, 2009
Sunday preparations
Good news! The BART strike has been averted. This means I get to sleep in my own bed tonight instead of going to San Francisco. I spent the entire day at home relaxing with my family and a few special friends who dropped by for a bit. Tomorrow, Sierra and I will leave around 7:30 to get to San Francisco Kaiser with plenty of time to spare before my first appointment. Danny will be coming be there about noon. San Francisco Kaiser is at 2425 Geary. I was born there! I can't seem to locate the phone number there, not sure if this is the correct number or not...415-833-2239.
I missed two calls from Dr. Powell. She called yesterday while I was seeing Julie and Julia. She called again this morning, at the same time my cell phone, Danny's cell phone and our land line were all ringing. She left basically the same message that she will be seeing me on Monday. So I have no further news regarding the PET Scan. She did say my surgery might be earlier in the day and asked me to be available to come in earlier. The next entry on the blog will be by someone in the family. I'm signing off for a few days. Thanks for all the love, prayers and support!
I missed two calls from Dr. Powell. She called yesterday while I was seeing Julie and Julia. She called again this morning, at the same time my cell phone, Danny's cell phone and our land line were all ringing. She left basically the same message that she will be seeing me on Monday. So I have no further news regarding the PET Scan. She did say my surgery might be earlier in the day and asked me to be available to come in earlier. The next entry on the blog will be by someone in the family. I'm signing off for a few days. Thanks for all the love, prayers and support!
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