Dearest friends and family,
I have big news. On this sacred Easter week I was discharged from the hospital for the 5th time -- 5 months exactly to the day (Nov. 19-April 19). My body is healing well from the massive amounts of chemicals that have been put into it. As I lay in my hospital bed looking out the window before being discharged, I reflected on all that has happened since finding out I had Leukemia in mid November. Intuitively I feel this will be the last time I'll be back in the Kaiswer oncology wing. All the nurses and doctors I've met, some very dear and wonderful people, will always remain in my heart and I'm sure I'll go back there and visit them from time to time. So many memories of the last flood through me as I write this.
Now begins the next, new chapter, a resurrection, of sorts from the "tomb" of extremely aggressive, toxic (yet healing) chemotherapy.... I feel I owe my life to the doctors and nurses at Kaiser who brought me through one of the MOST difficult kinds of cancer. I still need to meet with my oncologist next week and discuss the methotrexate they want to give me for another 3 weeks in May. (For those interested, you can read about how difficult this particular form of chemo is here: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html )
My oncologist knows that I have questioned whether I could do another round of this chemo and is open to talking about alternatives as we go forward. I will also request another bone marrow biopsy to see where I stand....but I know deep inside that my body is free of leukemia. The doctors have been extremely encouraging all along. Kudos to my brave body for withstanding such an onslaught!
I still have some months ahead of getting my strength and muscle tone back, and I believe the outpatient treatment can be difficult at times too. But I will face what's ahead with all the courage and positivity I can muster.
In closing, I wanted to express gratitude for so many things...
I am grateful for all that has transpired
The darkness that was cleansed into Light
The moments of despair that led to hope
The opportunity of letting go of ALL control...
...Every nuance and impulse to hold on, to push or resist...
Every cry to have this cup removed from me.
I have greeted and welcomed a deeper side of me.
I have faced death and chosen life.
Thank you to all the friends who gathered around
my bedside -- whether or not in person
The hands that held mine during the dark night
and moments of joy
The unspeakable love I have felt
which birthed a new knowing
That I am loved very dearly
And that nothing will ever change that
I am grateful for my deepening faith
That it was shaken, stirred, examined
And that what came forth is a greater knowing
of that sacred relationship with the Good
in all things...
For my deepening bond with my sweetie, Peter,
Who was the best champion a woman in distress
could ever have by her side
For the harp concert on the day I was released from the hosp.
The stirring Music of Handel, Rachmoninoff, Debussy....
played by the harpist of the San Diego philharmonic
in a private appearance, just for me (at Peter's house)
For all the glimmers of true compassion and caring, of
giving, of empathy, of walking with strength and good
cheer by my side, for endless notes of comfort.
For my two brothers, Greg and Kevin, and my dear Aunt
Jean, and cousins, Jory, Alan and Ricky. I love you so much.
Happy, blessed Easter to all, Heidi
Friday, April 22, 2011
Thursday, April 14, 2011
Hi sweet friends and family,
Almost two weeks down and, hopefully, just one more ahead before going home for a week or so. This time, as last, my blood counts are lingering in the low range...though it's still too early to tell how things will turn around, or how quickly, in the next week. The doctor told me today that the bone marrow gets "tired" of the cycles of obliteration and rebirth this far into the treatment.... I've had a special pep talk with those cells today, doing visualizations and affirmations, and exercising more to signal activity and health to my neural networks! Overall, am doing better this time (in terms of nausea and pain) than any other time I've been in the hospital. A hugely welcome relief
For the first time in 5 months, since beginning my treatment in mid-November, had some scary "incidents" with the nursing staff -- wrong blood for my transfusion, wrong IV solutions, steroid eyedrops 4 days longer than prescribed, etc.. (I learned from the doctor today that those 4 extra days wouldn't hurt my eyes, thank goodness! All the other mistakes were caught in the nick of time.) When the wrong blood came up and almost wasn't caught, I had had enough and talked to the administrator of the oncology floor. The next day a friend called and told me about a book called "How to Survive your Hospital Stay." I found the mention of that particular book more than a coincidence and have been on high alert in terms of self-care and safety the last couple of days.
Other than these incidents, the majority of the staff has been incredibly supportive, caring and competent over my long stay in the hospital.
Am almost done!!!! And am starting to dream again of the evening's first stars at twilight on the island of Kauai, where Peter and I plan to go in late July.... of taking walks in the mornings around Oceana, of renewed health and strength entering my body's core, like a wellspring of prana -- always available and unstoppable in its healing force. As I lay here writing this, the mere thought of that force sends vibratory signals throughout my body.
I have learned, and continue to learn, so very much about myself here in this hospital "classroom". There is absolutely nothing more compelling than an experience like this in terms of self-examination.
Peter sent me a wonderful article about the Hero's Journey. Here's a short excerpt:
"Life can be lived in many ways. You can make it about making money or winning at all costs, or pleasing other people, or perhaps never standing out. Or you can live your life as a great journey of consciousness, one filled with many challenges and surprises, one that makes a positive contribution to the world....
...All of this suggests that the hero’s journey is no simple task. It involves developing a deep connection to your center, and an expanding beyond your known self to something greater and grander. It requires many skills: the “disciplined flow” of intentional but flexible consciousness; the capacity to construct, de-construct, and re-construct brain maps and filters at different levels; the willingness to learn creative nonviolence; the know-how to transform problems and suffering into solutions; and the courage to love your self and the world with all your being.... -- Stephen Gilligan, Ph.D.
This journey has certainly put me at the edge of my faith, my trust and ability to surrender everything.... everything..... But being at the edge has been awakening as perhaps nothing else could. I stand on the brink at times looking out into a vast emptiness, knowing that somewhere in the void, in the mystery, are the peals of wisdom, Self-claiming, and true transformation. It is a relentless journey, but one that has had many blessings along the way. Dare I say I wouldn't change it for anything? Hopefully I can achieve that attitude more and more. What an accomplishment that would be!
Love to all of you.
Heidi
P.S. There are some new photos posted under Misc. Photos of me in one of my wigs. Peter and I took these on our drive into the mountains on Sunday on a pass from the hospital for several hours.
Almost two weeks down and, hopefully, just one more ahead before going home for a week or so. This time, as last, my blood counts are lingering in the low range...though it's still too early to tell how things will turn around, or how quickly, in the next week. The doctor told me today that the bone marrow gets "tired" of the cycles of obliteration and rebirth this far into the treatment.... I've had a special pep talk with those cells today, doing visualizations and affirmations, and exercising more to signal activity and health to my neural networks! Overall, am doing better this time (in terms of nausea and pain) than any other time I've been in the hospital. A hugely welcome relief
For the first time in 5 months, since beginning my treatment in mid-November, had some scary "incidents" with the nursing staff -- wrong blood for my transfusion, wrong IV solutions, steroid eyedrops 4 days longer than prescribed, etc.. (I learned from the doctor today that those 4 extra days wouldn't hurt my eyes, thank goodness! All the other mistakes were caught in the nick of time.) When the wrong blood came up and almost wasn't caught, I had had enough and talked to the administrator of the oncology floor. The next day a friend called and told me about a book called "How to Survive your Hospital Stay." I found the mention of that particular book more than a coincidence and have been on high alert in terms of self-care and safety the last couple of days.
Other than these incidents, the majority of the staff has been incredibly supportive, caring and competent over my long stay in the hospital.
Am almost done!!!! And am starting to dream again of the evening's first stars at twilight on the island of Kauai, where Peter and I plan to go in late July.... of taking walks in the mornings around Oceana, of renewed health and strength entering my body's core, like a wellspring of prana -- always available and unstoppable in its healing force. As I lay here writing this, the mere thought of that force sends vibratory signals throughout my body.
I have learned, and continue to learn, so very much about myself here in this hospital "classroom". There is absolutely nothing more compelling than an experience like this in terms of self-examination.
Peter sent me a wonderful article about the Hero's Journey. Here's a short excerpt:
"Life can be lived in many ways. You can make it about making money or winning at all costs, or pleasing other people, or perhaps never standing out. Or you can live your life as a great journey of consciousness, one filled with many challenges and surprises, one that makes a positive contribution to the world....
...All of this suggests that the hero’s journey is no simple task. It involves developing a deep connection to your center, and an expanding beyond your known self to something greater and grander. It requires many skills: the “disciplined flow” of intentional but flexible consciousness; the capacity to construct, de-construct, and re-construct brain maps and filters at different levels; the willingness to learn creative nonviolence; the know-how to transform problems and suffering into solutions; and the courage to love your self and the world with all your being.... -- Stephen Gilligan, Ph.D.
This journey has certainly put me at the edge of my faith, my trust and ability to surrender everything.... everything..... But being at the edge has been awakening as perhaps nothing else could. I stand on the brink at times looking out into a vast emptiness, knowing that somewhere in the void, in the mystery, are the peals of wisdom, Self-claiming, and true transformation. It is a relentless journey, but one that has had many blessings along the way. Dare I say I wouldn't change it for anything? Hopefully I can achieve that attitude more and more. What an accomplishment that would be!
Love to all of you.
Heidi
P.S. There are some new photos posted under Misc. Photos of me in one of my wigs. Peter and I took these on our drive into the mountains on Sunday on a pass from the hospital for several hours.
Saturday, April 9, 2011
Woke up this morning feeling such a deep and abiding sense of well-being in my body. As I lay in bed, I let my thoughts and feelings travel to the Source of this powerful, yet gentle energy. It was as if my body was joining in the celebration of spring and new growth. I could feel it "humming", like a fine-tuned instrument. I have not yet had an experience like this since starting out my journey with Leukemia....especially in the days following a chemo treatment. Though my blood counts are going down, which is expected, I could feel another "force" beyond chemicals and the finite material of the body. It was that force I could sense this morning and I allowed myself a full hour or more to tune into it, affirm it and celebrate it...
It was so powerful and comforting....a message, perhaps, that all is well. A message of new life and new cycles.
The A-Fib was a blessing in disguise as it brought me to another floor and a room with a stunning view of sky and clouds. What a difference it makes to look into the vastness of nature, especially when She is all decked out in her finest spring wardrobe. Today I'll go back to the oncology wing reinforced and renewed in a way I hadn't expected.
Today is day #7 after my initial chemo this past Monday. It's typically the day when nausea and other side effects begin to kick in. What an amazing surprise to be greeted by this beautiful life force energy this morning....
I will be getting a hemaglobin transfusion today which will give me a boost of energy. And I just asked the doctor if I could have a "day pass" out of the hospital tomorrow (Sunday) if all looks well in the morning....yes, this would be fine, he said. Peter and I will take a drive up some mountain top and throw snowballs at each other. I'll try to take some pictures to post here....
Love to all,
Heidi
It was so powerful and comforting....a message, perhaps, that all is well. A message of new life and new cycles.
The A-Fib was a blessing in disguise as it brought me to another floor and a room with a stunning view of sky and clouds. What a difference it makes to look into the vastness of nature, especially when She is all decked out in her finest spring wardrobe. Today I'll go back to the oncology wing reinforced and renewed in a way I hadn't expected.
Today is day #7 after my initial chemo this past Monday. It's typically the day when nausea and other side effects begin to kick in. What an amazing surprise to be greeted by this beautiful life force energy this morning....
I will be getting a hemaglobin transfusion today which will give me a boost of energy. And I just asked the doctor if I could have a "day pass" out of the hospital tomorrow (Sunday) if all looks well in the morning....yes, this would be fine, he said. Peter and I will take a drive up some mountain top and throw snowballs at each other. I'll try to take some pictures to post here....
Love to all,
Heidi
Friday, April 8, 2011
A-Fib and a Trip to the 3rd Floor
Hi dear ones,
Well, A-Fib was bound to catch up with me sooner or later here at the hospital, and it did last night. I'm not sure I reported prior to this, but my last time out of the hospital I had numerous episodes and was in the ER a couple of times. The more often it comes, it sets up a pattern of coming more often: "A-Fib begets A-Fib" the doctors have told me. Having this ON TOP of Leukemia has been a real challenge since the A-Fib is extremely depleting (as is the Leukemia).
But I seemed to take it all pretty much in stride. Peter stayed til nearly 12:30 a.m. to make sure I got transferred to the heart floor OK, which happened around 1 a.m. I must say, this floor is very nice. My room overlooks a beautiful pine tree and the very green, rain-soaked hills facing west toward the ocean. I'm told by the nurses that the sunsets are spectacular from this Wing. I actually hope I can stay up here for awhile.
They gave me a calcium blocker last night and within 30 mins. I had converted back to sinus (normal heart beat). I was in A-Fib for just about 5-6 hours, unlike the other recent times when it stretched out to 17 and 24 hours! I am so looking forward to the surgery called Ablation that they use to fix this problem when I am stronger...perhaps by this summer. The very week I decided to go ahead with the surgery is the week I found out about the Leukemia, so it all had to get put on the back burner.
It is a rush against time, however.... the more often it occurs, the more likely it will become chronic (in A-Fib all the time) and the less effective the surgery. I do my best to surrender all of this from the depths of me. There is simply nothing else I can do, and it brings me some peace.
I've made it through just about a week...with two more to go.
Sending love to all of you!
Heidi
Well, A-Fib was bound to catch up with me sooner or later here at the hospital, and it did last night. I'm not sure I reported prior to this, but my last time out of the hospital I had numerous episodes and was in the ER a couple of times. The more often it comes, it sets up a pattern of coming more often: "A-Fib begets A-Fib" the doctors have told me. Having this ON TOP of Leukemia has been a real challenge since the A-Fib is extremely depleting (as is the Leukemia).
But I seemed to take it all pretty much in stride. Peter stayed til nearly 12:30 a.m. to make sure I got transferred to the heart floor OK, which happened around 1 a.m. I must say, this floor is very nice. My room overlooks a beautiful pine tree and the very green, rain-soaked hills facing west toward the ocean. I'm told by the nurses that the sunsets are spectacular from this Wing. I actually hope I can stay up here for awhile.
They gave me a calcium blocker last night and within 30 mins. I had converted back to sinus (normal heart beat). I was in A-Fib for just about 5-6 hours, unlike the other recent times when it stretched out to 17 and 24 hours! I am so looking forward to the surgery called Ablation that they use to fix this problem when I am stronger...perhaps by this summer. The very week I decided to go ahead with the surgery is the week I found out about the Leukemia, so it all had to get put on the back burner.
It is a rush against time, however.... the more often it occurs, the more likely it will become chronic (in A-Fib all the time) and the less effective the surgery. I do my best to surrender all of this from the depths of me. There is simply nothing else I can do, and it brings me some peace.
I've made it through just about a week...with two more to go.
Sending love to all of you!
Heidi
Thursday, April 7, 2011
Getting Through the Week....
Hi Everyone,
This week has had its ups and downs...but I'm getting through. The lumbar pucture was one of those things out of a movie -- took the doc so very long to get the needle in once again. It felt like about 30 mins of poking. But I was in a chipper mood that morning, and Peter was here cajoling me and reminding me to relax. The doctor said later he couldn't have done it if I had been anxious or reactive. So the methatrexate got into my spine and brain once again and I was glad to have that BEHIND me!
With this one treatment on Tuesday, I had another strange reaction where I became mentally confused. Dr. Liao told me today that this is one of the major side effects of this chemo. It's hard to explain how it feels when you cannot piece things together logically that took place just a few hours previously. I took a nap after lunch and woke up at 4 p.m. utterly convinced I had slept through the night and it was now way into the next day. I couldn't remember anything that had taken place that morning. I called my nurse and she helped me recall a few memories of the morning and said that she recalled the last time I was on methatrexate and this was a familiar response to it for me. I finally remembered Peter that morning and was able to put perspective around what happened, but it took nearly 3 hours to come back to my center.
The next and last treatment is ONLY methatrexate so I must think long and deeply about it and have a thorough discussion with the oncologist. Mirabai visited today and was here when Dr. Liao came into the room. She asked, "Do people die from Methatrexate and without skipping a beat he said "YES." But there is so much to consider. With the treatment, if you get through it, that is, studies have shown people have the best chance of a complete cure. But getting through it is a doozie, believe me. It seems to take over the neuron pathways, mix them up and gradually over time they begin to sort out. While you're going through it, there is much darkness.
So I have a few weeks more til I have to make that decision.
It was nice seeing Mirabai after almost six months. I had not seen her since before my illness. We had a lot of catching up to do and lots of love was shared.
I've been administered the last chemo for this time -- 3 straight days of it. I can feel it in my body, saturating the tissues and cells it needs to get. This particular chemo takes a month to work out of your system.
The doctor asked if I'd like to go home this weekend and recuperate there. But I opted on staying in the hospital for a while longer so I can see how I feel once chemo really starts to take effect, which is about 7-12 days into the treatment. They have better medications here to handle the side effects...
Well, that's enough of that! The San Diego skies are getting ready to rumble again, the wind is picking up and the air cooling down. It's brisk and beautiful outside, with such lovely colors of flowers lining the freeways and hills. So much is going on in our home we call Earth right now....As I sit here I try to send light out to all who are in far greater need than I. As the doctor was leaving today, he said: "Remember, you are cancer free." (Referring to my complete remission). I'm here this time because it is the protocol to repeat the treatment in order to get every last cell that might be left.
Love and Hugs to all of you who are sharing my journey.
Heidi
This week has had its ups and downs...but I'm getting through. The lumbar pucture was one of those things out of a movie -- took the doc so very long to get the needle in once again. It felt like about 30 mins of poking. But I was in a chipper mood that morning, and Peter was here cajoling me and reminding me to relax. The doctor said later he couldn't have done it if I had been anxious or reactive. So the methatrexate got into my spine and brain once again and I was glad to have that BEHIND me!
With this one treatment on Tuesday, I had another strange reaction where I became mentally confused. Dr. Liao told me today that this is one of the major side effects of this chemo. It's hard to explain how it feels when you cannot piece things together logically that took place just a few hours previously. I took a nap after lunch and woke up at 4 p.m. utterly convinced I had slept through the night and it was now way into the next day. I couldn't remember anything that had taken place that morning. I called my nurse and she helped me recall a few memories of the morning and said that she recalled the last time I was on methatrexate and this was a familiar response to it for me. I finally remembered Peter that morning and was able to put perspective around what happened, but it took nearly 3 hours to come back to my center.
The next and last treatment is ONLY methatrexate so I must think long and deeply about it and have a thorough discussion with the oncologist. Mirabai visited today and was here when Dr. Liao came into the room. She asked, "Do people die from Methatrexate and without skipping a beat he said "YES." But there is so much to consider. With the treatment, if you get through it, that is, studies have shown people have the best chance of a complete cure. But getting through it is a doozie, believe me. It seems to take over the neuron pathways, mix them up and gradually over time they begin to sort out. While you're going through it, there is much darkness.
So I have a few weeks more til I have to make that decision.
It was nice seeing Mirabai after almost six months. I had not seen her since before my illness. We had a lot of catching up to do and lots of love was shared.
I've been administered the last chemo for this time -- 3 straight days of it. I can feel it in my body, saturating the tissues and cells it needs to get. This particular chemo takes a month to work out of your system.
The doctor asked if I'd like to go home this weekend and recuperate there. But I opted on staying in the hospital for a while longer so I can see how I feel once chemo really starts to take effect, which is about 7-12 days into the treatment. They have better medications here to handle the side effects...
Well, that's enough of that! The San Diego skies are getting ready to rumble again, the wind is picking up and the air cooling down. It's brisk and beautiful outside, with such lovely colors of flowers lining the freeways and hills. So much is going on in our home we call Earth right now....As I sit here I try to send light out to all who are in far greater need than I. As the doctor was leaving today, he said: "Remember, you are cancer free." (Referring to my complete remission). I'm here this time because it is the protocol to repeat the treatment in order to get every last cell that might be left.
Love and Hugs to all of you who are sharing my journey.
Heidi
Monday, April 4, 2011
Back Again.....
Dear friends and family,
It's April 4th, a day after a wonderful birthday weekend, full of laughter, loving, delicious food (had my appetite back in full force!), and gorgeous spring-like weather. Today I was re-admitted to my "home away from home" these past 5 months -- the hospital -- for my 5th 3+ week chemo treatment.
It was a difficult drive here this morning as I tried to muster up my warrior spirit yet again, and to open to and not resist the experiences that await me. Memories of my previous visits came rushing into mental view, with the associated feelings and reflections. For some curious reason, I felt more anxious coming this time. As I sit here in these very familiar surroundings, I am affirming that the hospital, nurses, doctors and chemo are my allies, intended to heal and support me. I have a deep conviction that this is where I need to be. It's one of those inexplicable mysteries that I find myself here....and I reflect often on how destiny and choice intertwine to set us on our life's path, even though we cannot fathom it all on a conscious level.
I'm now on the homestretch.... This will probably be my last full treatment. The next and final treatment will be modified to a degree, and I hope it will be a shorter time in the hospital. My body/mind/spirit had such a hard time with that particular chemo treatment, I don't feel I could tolerate it again in the same dose as before. Today I get another lumbar puncture and Peter will be here to support me through it. I'm receiving chemo 4 days in a row this time (different types) and will remain here til I recuperate -- probably about 3 weeks total.
It's amazing to think ahead just a bit to mid-May and FREEDOM from these 4 walls I've come to know so well. It will feel so liberating to have my life back, and to feel my energy come back. I've spent a good 90% of the last 5 months in bed, and my muscles will need some major workouts to regain their strength. My sense is that this will take a few months, but what a great time I'll have waxing in energy and vigor instead of waning!
Thank you so very much for keeping me in your thoughts and prayers. I feel your love
and support very deeply.....
With gratitude for your friendship,
Heidi
It's April 4th, a day after a wonderful birthday weekend, full of laughter, loving, delicious food (had my appetite back in full force!), and gorgeous spring-like weather. Today I was re-admitted to my "home away from home" these past 5 months -- the hospital -- for my 5th 3+ week chemo treatment.
It was a difficult drive here this morning as I tried to muster up my warrior spirit yet again, and to open to and not resist the experiences that await me. Memories of my previous visits came rushing into mental view, with the associated feelings and reflections. For some curious reason, I felt more anxious coming this time. As I sit here in these very familiar surroundings, I am affirming that the hospital, nurses, doctors and chemo are my allies, intended to heal and support me. I have a deep conviction that this is where I need to be. It's one of those inexplicable mysteries that I find myself here....and I reflect often on how destiny and choice intertwine to set us on our life's path, even though we cannot fathom it all on a conscious level.
I'm now on the homestretch.... This will probably be my last full treatment. The next and final treatment will be modified to a degree, and I hope it will be a shorter time in the hospital. My body/mind/spirit had such a hard time with that particular chemo treatment, I don't feel I could tolerate it again in the same dose as before. Today I get another lumbar puncture and Peter will be here to support me through it. I'm receiving chemo 4 days in a row this time (different types) and will remain here til I recuperate -- probably about 3 weeks total.
It's amazing to think ahead just a bit to mid-May and FREEDOM from these 4 walls I've come to know so well. It will feel so liberating to have my life back, and to feel my energy come back. I've spent a good 90% of the last 5 months in bed, and my muscles will need some major workouts to regain their strength. My sense is that this will take a few months, but what a great time I'll have waxing in energy and vigor instead of waning!
Thank you so very much for keeping me in your thoughts and prayers. I feel your love
and support very deeply.....
With gratitude for your friendship,
Heidi
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