Greetings everyone...
There is so much spaciousness in this day. The nurses aren't coming in as often. My treatment is on hold, for the most part, until later tonight when they begin the sodium bicarbonate in preparation for my second rigorous round of methotrexate this week. I'm sitting in my hospital bed with little to do. If I were home now, I would be more active, perhaps creating some art. But here there is just this hospital bed, a window looking out at the brick wall of the wing next door, and the TV which I'm determined not to turn on. This hospital floor seems very quiet to me at the moment.
I have heard there is another patient around my age with my type of Leukemia on this same floor. She isn't doing so well as she has the Philadelphia chromosome. I wish I knew her room number so we could chat (if she wished), share notes, and be a support to one another. It's the second time in two days that I've heard of women in the hospital with ALL who have the chromosome and aren't doing well. I am so grateful to have dodged the bullet of that chromosome. There must be some purpose in that, and it gives me deep hope that this disease has come, not to take my life, but to free me to live more of life.
My blood counts continue to be spectacular (blessings and gratitude to my body for being so responsive and such a warrior!) Today they went up yet again (a good thing) and all of them are in the normal range, just a few days after the methotrexate. The more I learn about ALL, the more I understand that this is no small feat...and consquently, the more grateful I am to those mysical, magical forces within that bring life and healing.
I didn't feel quite well enough to be home this weekend and am not feeling "sick" enough to lay around the hospital all day. Fortunately, I got a day pass yesterday. Peter and I went out to lunch, then to a sweet little neighborhood park where we laid on Mother Earth for about an hour in silence, snuggling.....then to Coldstone, where I got a DELICIOUS banana caramel crunch, and finally to the movie True Grit. I had been out a little over 6 hours and was exhausted when we got back. Felt sooo good to stretch out and give myself over to this strange place I've been calling home for the last 3 months....
Today I get another day pass and Peter and I will drive up to my house to pick up some art supplies so I can have some creative focus during the next two weeks. It will help, believe me, as I'll be going back down, down, down into the dark chemo cavern: spinal chemo, brain fog, nausea, bone pain, blood transfusions....for the second week in a row.
It is a journey of utmost surrender. If I try to look for an escape hatch, I find none. There can be a sense of being trapped by pain, for there is nothing I can do with my will force to change "what is" except keep positive thoughts, feelings, images, and the love of family and friends very near to my heart. When the occasional tears come, I can feel compassion for my human-ness. What happens to us doesn't doesn't define us, but how we respond to it does.... This experience is forging within a new strength I didn't know I had.
What gets me through sometimes is the knowledge that this experience will have an end. There will be a day when I walk out of the hospital (I will frame my discharge papers!). Life, with all its potential, will be there to greet me. I will be somehow freer inside, perhaps a little wiser and stronger, and more giving. I know I will not take things for granted as I used to. Like health. And I know that LOVE is truly all that matters in the end. This experience has shown me that in spades. Love and service to others. This desire to help others go through Leukemia is growing within me. I'll definitely be looking for some ways to volunteer.
Much love to all my friends and family who are keeping up with my progress. Your caring means so much!
Heidi
Sunday, January 30, 2011
Thursday, January 27, 2011
Request for Blood Donations
Hi sweet friends and well-wishers!
I am always so touched by your comments about my blog entries....this last batch was especially fun and heart-warming to read. Yes to writing a book! I almost signed up for an online mentoring process to help first time writers get their books out in one year. Am not 100% sure that I'm up to the energy output at this time, but that day WILL come. I'm touched by your encouragement!
I'm beginning to see just a crack of light at the end of the tunnel of my hospital treatment. The doctor told me yesterday that the next phase (beginning in June) will be so much easier on me. June is really not that far away. This third course of chemo is well under way and then I'm on a fast track toward the end...countdown just 3 quick little months .... and then so much more of my life comes back.
There are several significant factors in my favor toward my remaining in a full long-term remission -- I caught the Leukemia so soon, got into a remission after the first chemo treatment, and have the best proven care. I'm surrounded by so much love and light. You can tell I'm feeling upbeat today. One of you wrote "Screw welcoming the pain. Welcome the wellness!" Thank you for the reminder. It gets tricky when there is so much discomfort.... Easy to forget at times to focus on the glimmers of hope and well-being.
This week is a blur. I slept nearly 72 hours off and on (mostly on). Yesterday I couldn't interact at all with the 3rd dimension. People came and went into and out of my room... I could squeeze a hand or two to let them know I knew they were there, but I was out of it, more so than at any other time since beginning my treatment. There was nothing to do but surrender, to let go and to trust that life would come back, as it did this morning. It is a strange experience indeed when there is absolutely nothing you (or the doctors) can do to stir the life force sufficiently. It has its own miraculous time-line.
I go through this chemo cycle for the next 2 weeks. It's a very intense cycle. If all goes well, however, I will get a "day pass" this weekend on Sat. and Sunday and can take a drive & perhaps, if I have an appetite, get something to eat when I'm out. I've developed a "conditioned" response to the hospital food -- even the smell of the trays in the hallway makes me gag. I'm told this is not unusual for chemo patients. There is nothing on the hospital menu that appeals to me. No doubt more pounds will be dropping off. I haven't weighed so little since I was in my 30's!
If any of you have the inclination to donate blood to my cause, it would be very much appreciated. My blood type is A positive, but I believe you can have A negative, A, O positive, etc. and I can still use your blood. Am anticipating needing more transfusions and it is a great comfort knowing that I'm receiving blood from a known source. All you have to do is ask them to ear-mark it for Sherry (Heidi) Hall at the Kaiser Permanente hospital in San Diego and they will make sure I get it.
Much sweet love to all of you. I feel your support profoundly each day...
Heidi
I am always so touched by your comments about my blog entries....this last batch was especially fun and heart-warming to read. Yes to writing a book! I almost signed up for an online mentoring process to help first time writers get their books out in one year. Am not 100% sure that I'm up to the energy output at this time, but that day WILL come. I'm touched by your encouragement!
I'm beginning to see just a crack of light at the end of the tunnel of my hospital treatment. The doctor told me yesterday that the next phase (beginning in June) will be so much easier on me. June is really not that far away. This third course of chemo is well under way and then I'm on a fast track toward the end...countdown just 3 quick little months .... and then so much more of my life comes back.
There are several significant factors in my favor toward my remaining in a full long-term remission -- I caught the Leukemia so soon, got into a remission after the first chemo treatment, and have the best proven care. I'm surrounded by so much love and light. You can tell I'm feeling upbeat today. One of you wrote "Screw welcoming the pain. Welcome the wellness!" Thank you for the reminder. It gets tricky when there is so much discomfort.... Easy to forget at times to focus on the glimmers of hope and well-being.
This week is a blur. I slept nearly 72 hours off and on (mostly on). Yesterday I couldn't interact at all with the 3rd dimension. People came and went into and out of my room... I could squeeze a hand or two to let them know I knew they were there, but I was out of it, more so than at any other time since beginning my treatment. There was nothing to do but surrender, to let go and to trust that life would come back, as it did this morning. It is a strange experience indeed when there is absolutely nothing you (or the doctors) can do to stir the life force sufficiently. It has its own miraculous time-line.
I go through this chemo cycle for the next 2 weeks. It's a very intense cycle. If all goes well, however, I will get a "day pass" this weekend on Sat. and Sunday and can take a drive & perhaps, if I have an appetite, get something to eat when I'm out. I've developed a "conditioned" response to the hospital food -- even the smell of the trays in the hallway makes me gag. I'm told this is not unusual for chemo patients. There is nothing on the hospital menu that appeals to me. No doubt more pounds will be dropping off. I haven't weighed so little since I was in my 30's!
If any of you have the inclination to donate blood to my cause, it would be very much appreciated. My blood type is A positive, but I believe you can have A negative, A, O positive, etc. and I can still use your blood. Am anticipating needing more transfusions and it is a great comfort knowing that I'm receiving blood from a known source. All you have to do is ask them to ear-mark it for Sherry (Heidi) Hall at the Kaiser Permanente hospital in San Diego and they will make sure I get it.
Much sweet love to all of you. I feel your support profoundly each day...
Heidi
Tuesday, January 25, 2011
Progress
Greetings!
I'm on another chemo safari for the next three weeks, with unexpected twists and turns. Each hill and valley gives me new vistas and new challenges. Woke up this morning determined to traverse the day with grit, but the lumbar puncture was a bit more than I could bear. My stoic attitude began to break down when the needle didn't get into the right spot and the doctor (too inexperienced in my opinion) kept having to poke it in and out, each time with excruciating pain. Finally, after about 20 mins. of pure agony, the chemo went in and the needle could come out, for good... Needless (needle-less??) to say, I will request another doctor for next week!!!!
This was all on top of just 1-2 hours of sleep last night -- a loooooong night of chemo and a substance called sodium bicarbonate to protect my kidneys. Today I have to drink at least a half gallon of liquid in order to avoid developing kidney stones. With that much liquid going into me last night (about another half gallon of the sodium bicarbonate and the chemo), you can imagine what I was doing every 10-15 mins.!!! Sleep was impossible.
So this safari (so far) has taken me on a ride into some rocky places. There were some bright "vistas" along the way, however. Some wonderful people stopped by my room -- hospital staff and a good friend, Mel), and Peter was there during the puncture to offer moral support and humor. He developed this "warrior" song and dance that always brings a smile to my face, even during the most painful part of the procedure.
An elderly woman who volunteers here at the hospital just brought me a warm, homemade chocolate chip cookie. Delicious! Will soon try to take a nap. The blinds are drawn, lights out (it's the middle of the day) and I'm all tucked in this fairly comfortable hosp. bed. No interruptions for a few hours. There is so much of this mexatrexate in me at this point I can literally taste it in my mouth. Yuck!
As I was laying in bed last night I kept repeating these words over and over again, trying to feel them deeply in every fiber of my being: "My body cells are made of Light. It permeates every particle of my being. I am living in that Light. This healing Light fills me within and without." It helped shift my attention from the chemo. I need this shift more than the other earlier treatments as I begin to understand and feel the side effects of the chemo more.
Peter reminded me during the puncture to welcome the pain and not resist it. In all honesty, I found that exceedingly difficult...though if some of that welcoming filtered through just by a crack, which I think it did, it helped get me through. I love the reminders to welcome life's experiences , hard as it is sometimes, and to know that there is purpose here. I can create purpose and destiny by how I meet them each day.
I am looking forward to a beautiful pond just around the jagged corner of my sojourn..with birds singing and soft grasses waving gently in the breeze... When I keep this journey in perspective, that day is truly not too far off
Love to all of you, Heidi
I'm on another chemo safari for the next three weeks, with unexpected twists and turns. Each hill and valley gives me new vistas and new challenges. Woke up this morning determined to traverse the day with grit, but the lumbar puncture was a bit more than I could bear. My stoic attitude began to break down when the needle didn't get into the right spot and the doctor (too inexperienced in my opinion) kept having to poke it in and out, each time with excruciating pain. Finally, after about 20 mins. of pure agony, the chemo went in and the needle could come out, for good... Needless (needle-less??) to say, I will request another doctor for next week!!!!
This was all on top of just 1-2 hours of sleep last night -- a loooooong night of chemo and a substance called sodium bicarbonate to protect my kidneys. Today I have to drink at least a half gallon of liquid in order to avoid developing kidney stones. With that much liquid going into me last night (about another half gallon of the sodium bicarbonate and the chemo), you can imagine what I was doing every 10-15 mins.!!! Sleep was impossible.
So this safari (so far) has taken me on a ride into some rocky places. There were some bright "vistas" along the way, however. Some wonderful people stopped by my room -- hospital staff and a good friend, Mel), and Peter was there during the puncture to offer moral support and humor. He developed this "warrior" song and dance that always brings a smile to my face, even during the most painful part of the procedure.
An elderly woman who volunteers here at the hospital just brought me a warm, homemade chocolate chip cookie. Delicious! Will soon try to take a nap. The blinds are drawn, lights out (it's the middle of the day) and I'm all tucked in this fairly comfortable hosp. bed. No interruptions for a few hours. There is so much of this mexatrexate in me at this point I can literally taste it in my mouth. Yuck!
As I was laying in bed last night I kept repeating these words over and over again, trying to feel them deeply in every fiber of my being: "My body cells are made of Light. It permeates every particle of my being. I am living in that Light. This healing Light fills me within and without." It helped shift my attention from the chemo. I need this shift more than the other earlier treatments as I begin to understand and feel the side effects of the chemo more.
Peter reminded me during the puncture to welcome the pain and not resist it. In all honesty, I found that exceedingly difficult...though if some of that welcoming filtered through just by a crack, which I think it did, it helped get me through. I love the reminders to welcome life's experiences , hard as it is sometimes, and to know that there is purpose here. I can create purpose and destiny by how I meet them each day.
I am looking forward to a beautiful pond just around the jagged corner of my sojourn..with birds singing and soft grasses waving gently in the breeze... When I keep this journey in perspective, that day is truly not too far off
Love to all of you, Heidi
Saturday, January 22, 2011
A Glorious Weekend before the Hospital...again
Hi Everyone,
I'm making the most of this beautiful San Diego weather this weekend, before my hospital journey begins again on Monday...feeling the warm sun on my skin, listening to the birds sing without a care in the world, looking out at the vastness of sea and sky. Peter is here this weekend. I gave him a hair cut and trimmed his beard. These quiet Saturday mornings are so different from my supremely focused active life before Leukemia, and it is good to allow the moments to soak in without thought of the future or the past.
I found a wonderful acupuncturist just 15 mins. from my house. Went to two appts. this week for the nausea and they really seemed to help. We discussed the side effects from chemo -- he has experience with oncology support. I look forward to connecting with him periodically to help me through the inevitable pain and discomfort as my body receives more of this oddly healing poison.
I'm finding myself looking ahead just a bit, now that just 3 months remain to the hospital part of my treatment. Two weeks at home showed me how gradual my strength comes back. I innocently felt it would be back almost full force by now...eating well, sleeping well, for the most part, and having the last chemo treatment a good month ago (not counting the 10 min. spinal chemo I had two weeks ago). I have heard that it can take many moons to recover from chemo and, once again, patience is needed. Great patience. More patience than I've ever had to must so far in these 60 years....
For those of you who have written me personal messages offering support of various kinds, please know that I have taken them all to heart and very much appreciate your suggestions. This blog doesn't allow me to reply personally, so if you'd like to hear from me, please give me your email address in your message. I am always open for visits too -- whether in the hosp. or home.
My blood counts are great right now! After a very high ALT liver count (indicating potential damage to my liver), in just one week the level is back to the normal range. It was very encouraging to see how quickly it recovered by just eliminating some of the drugs I was taking! I keep talking to my liver and organs telling them to hang in there through the next several months to a year!
Time for the shot in my stomach and then another avocado and dill pickle sandwich!
Love and Hugs to all of you....
Heidi
I'm making the most of this beautiful San Diego weather this weekend, before my hospital journey begins again on Monday...feeling the warm sun on my skin, listening to the birds sing without a care in the world, looking out at the vastness of sea and sky. Peter is here this weekend. I gave him a hair cut and trimmed his beard. These quiet Saturday mornings are so different from my supremely focused active life before Leukemia, and it is good to allow the moments to soak in without thought of the future or the past.
I found a wonderful acupuncturist just 15 mins. from my house. Went to two appts. this week for the nausea and they really seemed to help. We discussed the side effects from chemo -- he has experience with oncology support. I look forward to connecting with him periodically to help me through the inevitable pain and discomfort as my body receives more of this oddly healing poison.
I'm finding myself looking ahead just a bit, now that just 3 months remain to the hospital part of my treatment. Two weeks at home showed me how gradual my strength comes back. I innocently felt it would be back almost full force by now...eating well, sleeping well, for the most part, and having the last chemo treatment a good month ago (not counting the 10 min. spinal chemo I had two weeks ago). I have heard that it can take many moons to recover from chemo and, once again, patience is needed. Great patience. More patience than I've ever had to must so far in these 60 years....
For those of you who have written me personal messages offering support of various kinds, please know that I have taken them all to heart and very much appreciate your suggestions. This blog doesn't allow me to reply personally, so if you'd like to hear from me, please give me your email address in your message. I am always open for visits too -- whether in the hosp. or home.
My blood counts are great right now! After a very high ALT liver count (indicating potential damage to my liver), in just one week the level is back to the normal range. It was very encouraging to see how quickly it recovered by just eliminating some of the drugs I was taking! I keep talking to my liver and organs telling them to hang in there through the next several months to a year!
Time for the shot in my stomach and then another avocado and dill pickle sandwich!
Love and Hugs to all of you....
Heidi
Tuesday, January 18, 2011
Hi Everyone,
Still a few more days at home....am starting to prepare myself mentally for the next hospital session. For the first time in 9 weeks I can walk for about 30 mins. on my own steam and take short trips out (once a day for 30 mins). After "feeling into" the trip Peter and I had planned for this weekend to the desert we've decided that it would be more prudent to postpone it for sometime in the future when I can truly celebrate my recovery, when nausea is a distant dream, and energy flows through my body with much higher intensity than it does now! It was a tough decision, but after it was made, I felt at peace.
I have always had a tendency to become too active too soon when unwell....a pattern I am dedicating to changing on this healing journey. I realized, through the cautionary words of a good friend, that ALL my energy needs to go into healing right now. There will be plenty of time for travel in the future...
I'll be posting a fun photo soon -- be sure to check it out. I haven't yet shown my beautiful bald head! Now you can see it in an interesting photo out in Peter's backyard. It is self explanatory....but here's a hint: I took a tumble... Fortunately, Peter and I erupted in prolonged laughter...
There are so many lessons in this Leukemia. Not having "control" over my body (energy-wise) calls for such deep surrender. My active nature -- a habit of a lifetime -- rises up inside me ....but all I have is a simmer. There is no "boil" at the moment. Try as I may with my will, my limbs are weak and I must honor, with patience, the slow healing and recovery process. I had thought I would be motivated to do many things when home these two weeks. Have been surprised by how sedentary I have been, how quickly the day goes by...how fleeting time truly is.
One interesting thing to share before signing off... my taste buds have truly been (temporarily) altered through the chemo. There are so few foods that sound good to me and many, many that I simply cannot get down. My latest fav? Avocado sandwiches with dill pickles and plenty of lettuce and tomatoes. I eat them for lunch and dinner, and nothing else! Everything else -- pizza, quinoa, even my beloved greens -- are not in the mix at the moment. Very curious!
Kaiser is sending home health care to my house twice each week to check on me. I have only praise for Kaiser...the kindness and efficiency of 99% of the personnel I've come in contact with has been truly remarkable. Today Jeannie came by to change the dressing on my picc line which I opted to keep in my arm during my stay at home, rather than going through another "installment" episode next Monday when going back to the hosp. For those of you who don't know what a picc line is -- two tubes are inserted into the upper arm and "threaded" into a vein that goes into the chest. This is where they administer the chemo and other drugs. It can stay in the arm for a whole year!
Please feel free to call me any time and, when in the hospital, would love to see any of you! You are all my lifeline!
Much love!
Heidi
Still a few more days at home....am starting to prepare myself mentally for the next hospital session. For the first time in 9 weeks I can walk for about 30 mins. on my own steam and take short trips out (once a day for 30 mins). After "feeling into" the trip Peter and I had planned for this weekend to the desert we've decided that it would be more prudent to postpone it for sometime in the future when I can truly celebrate my recovery, when nausea is a distant dream, and energy flows through my body with much higher intensity than it does now! It was a tough decision, but after it was made, I felt at peace.
I have always had a tendency to become too active too soon when unwell....a pattern I am dedicating to changing on this healing journey. I realized, through the cautionary words of a good friend, that ALL my energy needs to go into healing right now. There will be plenty of time for travel in the future...
I'll be posting a fun photo soon -- be sure to check it out. I haven't yet shown my beautiful bald head! Now you can see it in an interesting photo out in Peter's backyard. It is self explanatory....but here's a hint: I took a tumble... Fortunately, Peter and I erupted in prolonged laughter...
There are so many lessons in this Leukemia. Not having "control" over my body (energy-wise) calls for such deep surrender. My active nature -- a habit of a lifetime -- rises up inside me ....but all I have is a simmer. There is no "boil" at the moment. Try as I may with my will, my limbs are weak and I must honor, with patience, the slow healing and recovery process. I had thought I would be motivated to do many things when home these two weeks. Have been surprised by how sedentary I have been, how quickly the day goes by...how fleeting time truly is.
One interesting thing to share before signing off... my taste buds have truly been (temporarily) altered through the chemo. There are so few foods that sound good to me and many, many that I simply cannot get down. My latest fav? Avocado sandwiches with dill pickles and plenty of lettuce and tomatoes. I eat them for lunch and dinner, and nothing else! Everything else -- pizza, quinoa, even my beloved greens -- are not in the mix at the moment. Very curious!
Kaiser is sending home health care to my house twice each week to check on me. I have only praise for Kaiser...the kindness and efficiency of 99% of the personnel I've come in contact with has been truly remarkable. Today Jeannie came by to change the dressing on my picc line which I opted to keep in my arm during my stay at home, rather than going through another "installment" episode next Monday when going back to the hosp. For those of you who don't know what a picc line is -- two tubes are inserted into the upper arm and "threaded" into a vein that goes into the chest. This is where they administer the chemo and other drugs. It can stay in the arm for a whole year!
Please feel free to call me any time and, when in the hospital, would love to see any of you! You are all my lifeline!
Much love!
Heidi
Friday, January 14, 2011
Visit with the Oncologist
Hi Everyone!
Today is a glorious day in Southern California. Warm sun, cool breeze...the leaves are glistening with the sunlight. I have just completed my first week at home after nearly two months in the hosp. My nausea is FINALLY abating (though not totally gone), my pain levels are manageable now without pain medication and I am absolutely loving the freedom of my own rhythms. I just cooked some organic kale for lunch, along with other yummy food, and ate it outside on my front porch in the sun.
I'm not sure if I mentioned it in my latest update, but this week I've needed to learn how to give myself a shot of heprin in the stomach! I have known others who have had to do this and my own mother injected herself with insulin due to diabetes. I used to wonder how they mustered the courage to plunge the needle into one's one tummy. It's just one more thing that one has to step up to, and it's a great exercise in detachment. I keep telling myself that pain, like a bee sting, is over fairly quickly. I won't go into any more detail (for those who are squeamish), but am finding my way through this latest stage in my treatment.
The Doc said I don't have to go back into the hospital for another 10 days!! I have a week from this coming Monday to rest, read, take short walks as my energy allows, and my favorite -- visit with friends who come by. There are still moments throughout the day, especially when I wake up in the morning, when I realize there is no escaping the reality of leukemia. However, I am grateful for the blessed respite I get during sleep and dreams and many moments of meditation, love and laughter. And it is not the whole reality of my being...
The statistics for ALL (Acute Lymphoblastic Leukemia) for adults show that many people (about 60 percent) have a recurrence at some point in the future. I have such a deep confidence that I will be in the 40 percent of those who live out their days leukemia free.
Peter and I are planning a brief get away next weekend, before going back for another 3 weeks or so of chemo. I long for the healing energy of the high desert, to feel the windswept breeze of mountains and meadows, and to breathe in fresh, crisp air. Am not yet up to much traveling, so we are planning the trip carefully with no rush or stress. I have needed a trip like this, however short, to boost my morale and spirits. We will come back Monday morning and he will take me straight into the hospital for another lumbar puncture and extensive chemo into the spine and brain (even though my spinal fluid showed no sign of cancer, they still need/want to make sure nothing is "lurking" there). This particular treatment is so toxic that they have to administer an "antidote" the following day to avoid kidney failure! I have this treatment three weeks in a row.
My art has been beckoning me and I know I need to return to it soon. Allowing my heart and spirit to express through this medium feels like a lifeline to me now. I may take some supplies with me into the hosp. if I can.
Thank all of you again for your love, prayers and encouragement.
Heidi
Today is a glorious day in Southern California. Warm sun, cool breeze...the leaves are glistening with the sunlight. I have just completed my first week at home after nearly two months in the hosp. My nausea is FINALLY abating (though not totally gone), my pain levels are manageable now without pain medication and I am absolutely loving the freedom of my own rhythms. I just cooked some organic kale for lunch, along with other yummy food, and ate it outside on my front porch in the sun.
I'm not sure if I mentioned it in my latest update, but this week I've needed to learn how to give myself a shot of heprin in the stomach! I have known others who have had to do this and my own mother injected herself with insulin due to diabetes. I used to wonder how they mustered the courage to plunge the needle into one's one tummy. It's just one more thing that one has to step up to, and it's a great exercise in detachment. I keep telling myself that pain, like a bee sting, is over fairly quickly. I won't go into any more detail (for those who are squeamish), but am finding my way through this latest stage in my treatment.
The Doc said I don't have to go back into the hospital for another 10 days!! I have a week from this coming Monday to rest, read, take short walks as my energy allows, and my favorite -- visit with friends who come by. There are still moments throughout the day, especially when I wake up in the morning, when I realize there is no escaping the reality of leukemia. However, I am grateful for the blessed respite I get during sleep and dreams and many moments of meditation, love and laughter. And it is not the whole reality of my being...
The statistics for ALL (Acute Lymphoblastic Leukemia) for adults show that many people (about 60 percent) have a recurrence at some point in the future. I have such a deep confidence that I will be in the 40 percent of those who live out their days leukemia free.
Peter and I are planning a brief get away next weekend, before going back for another 3 weeks or so of chemo. I long for the healing energy of the high desert, to feel the windswept breeze of mountains and meadows, and to breathe in fresh, crisp air. Am not yet up to much traveling, so we are planning the trip carefully with no rush or stress. I have needed a trip like this, however short, to boost my morale and spirits. We will come back Monday morning and he will take me straight into the hospital for another lumbar puncture and extensive chemo into the spine and brain (even though my spinal fluid showed no sign of cancer, they still need/want to make sure nothing is "lurking" there). This particular treatment is so toxic that they have to administer an "antidote" the following day to avoid kidney failure! I have this treatment three weeks in a row.
My art has been beckoning me and I know I need to return to it soon. Allowing my heart and spirit to express through this medium feels like a lifeline to me now. I may take some supplies with me into the hosp. if I can.
Thank all of you again for your love, prayers and encouragement.
Heidi
Wednesday, January 12, 2011
HOME FOR AWHILE
Dear friends and family,
This post will have a little more thoughtful tone. It felt comforting to walk through the door of my house and be greeted by what has been my life for the last 10 years. My art hangs on the walls...memories of art shows gone by and more art to come. The silence in the house is palpable after the constant noise of the hospital....
Being alone at the moment, and feeling somewhat "outside of time" has caused me to reflect on many chapters of my life -- most notably my many years in the SRF ashram, and the years that followed. I believe that life has a way of bringing us to deeper levels of insight. This illness took me abruptly out of my "doer" mode and into a "being" mode where there is only my inner resources and the vast spiritual dimensions available to me. My dear friends and family are a part of that dimension, for I feel Spirit expresses through everyone in my midst -- friend and stranger a like. We are intricately connected. I have experienced this more than ever in the two months I've been hospitalized.
I know it's been said before, but there is nothing quite like a catastrophic illness to point the heart, intention and deepest reflection toward what really matters in life. I found myself grieving a bit this morning for the loss of friends in the past, abrupt endings of relationships, etc. Part of "getting well", I feel, is being able to face (not resist) all aspects of life's experiences, past and present, and gently coming to peace. As mentioned above, I went from doing to being in just a few days. For those of you who know me well, you will know that I have always had more than one project going on: art, work, editing, etc, etc. Not having the strength (or even the mental focus at times) has put me into a completely different zone for these last 2 months. I can see that it is by divine design, for it has brought me to the edge of being...and in the end, what else truly matters?
I've quoted this before, but will do so again now: "To everything that has happened up til now, thanks. To everything that will come in the future, yes." This quote gives me daily courage to continue saying yes to all the aspects (expected and unexpected) of this healing journey.
The spinal chemo had just a few moments of all out pain, but once the needle got into place, all was well. Peter came and rubbed my shoulders during the procedure. Soooo comforting. My next course of treatment will include several more lumbar punctures and spinal chemos. Now that I know what to expect, perhaps I'll relax into it more????....
I will find out on Friday when I go back into the hospital. Hopefully I will get one more week at home before another gruelling 3 week stay in the hosp. After that I will be half way through!
All my love to each of you.
Heidi
This post will have a little more thoughtful tone. It felt comforting to walk through the door of my house and be greeted by what has been my life for the last 10 years. My art hangs on the walls...memories of art shows gone by and more art to come. The silence in the house is palpable after the constant noise of the hospital....
Being alone at the moment, and feeling somewhat "outside of time" has caused me to reflect on many chapters of my life -- most notably my many years in the SRF ashram, and the years that followed. I believe that life has a way of bringing us to deeper levels of insight. This illness took me abruptly out of my "doer" mode and into a "being" mode where there is only my inner resources and the vast spiritual dimensions available to me. My dear friends and family are a part of that dimension, for I feel Spirit expresses through everyone in my midst -- friend and stranger a like. We are intricately connected. I have experienced this more than ever in the two months I've been hospitalized.
I know it's been said before, but there is nothing quite like a catastrophic illness to point the heart, intention and deepest reflection toward what really matters in life. I found myself grieving a bit this morning for the loss of friends in the past, abrupt endings of relationships, etc. Part of "getting well", I feel, is being able to face (not resist) all aspects of life's experiences, past and present, and gently coming to peace. As mentioned above, I went from doing to being in just a few days. For those of you who know me well, you will know that I have always had more than one project going on: art, work, editing, etc, etc. Not having the strength (or even the mental focus at times) has put me into a completely different zone for these last 2 months. I can see that it is by divine design, for it has brought me to the edge of being...and in the end, what else truly matters?
I've quoted this before, but will do so again now: "To everything that has happened up til now, thanks. To everything that will come in the future, yes." This quote gives me daily courage to continue saying yes to all the aspects (expected and unexpected) of this healing journey.
The spinal chemo had just a few moments of all out pain, but once the needle got into place, all was well. Peter came and rubbed my shoulders during the procedure. Soooo comforting. My next course of treatment will include several more lumbar punctures and spinal chemos. Now that I know what to expect, perhaps I'll relax into it more????....
I will find out on Friday when I go back into the hospital. Hopefully I will get one more week at home before another gruelling 3 week stay in the hosp. After that I will be half way through!
All my love to each of you.
Heidi
Saturday, January 8, 2011
GOOD NEWS!
Dear Family and Friends,
I had the most remarkable day yesterday... My White Blood Count soared to a whopping 6.3 -- completely in the normal range now. (The nurse just came in when writing this and said that today it is 8.6 and that my platelets are up to 90K!) This has allowed me to get off the neutropenic diet in the hospital (i.e. no fresh fruit or vegetables) that I've been on for 6 weeks and have my first salad yesterday!
My main oncologist, Dr. Pollikoff, just came by... I'll be definitely getting the spinal chemo on Monday and then discharged from the hospital for almost 2 weeks!!!! When I return I will begin the third module of the chemo...something called mexathrexate... which goes into the brain. They will need to do a kidney flush because of the toxic amount of chemo in my system, but the doc said it will not be as difficult as the first two modules and has a much shorter recovery time. Such a relief to hear that.
Yesterday I met with a wonderful contemplative Catholic priest -- Father Justin. (For those of you who have read any of Father Thomas Keating's writings, Father Justin's philosophy is very similar.) Peter knows him and arranged for him to come to my hospital room. We talked about Christ Consciousness, about surrendering the self (false self), opening into a more expanded awareness of the mystical nature of Christ and the Divine. I found it deeply stirring. He was refreshingly authentic and real.
I took much of what we spoke about into my meditation this morning, gently surrendering this body, personality and self into an expanded space. To me, surrender is not having to "do" anything and cannot be forced.... it's just a gentle opening and turning over and release. I experienced a very special sense of well-being, and from there the whole morning unfolded with such good news. I have needed a day like this. The beautiful silvery clouds outside my window give way now and then to a brilliant sun....a metaphor for my hospital journey. The sun came out today in my treatment and I can see, for the first time, that I AM making it through this, that life is full and good, that I am well on my way toward total healing.
Dr. Pollikoff is giving me a "day pass" tomorrow of about two hours, so Peter and I will take a drive and maybe stop somewhere yummy for a bite. It's hard to believe that soon I'll be able to get out of this hospital gown and into my jeans and sweaters. Maybe this next week I'll go wig shopping! Blond? Red head? Brunette? I will have fun choosing.
Sending each of you my love and gratitude for your continued interest, care, friendship and love. I couldn't make it through this without you.
Heidi
I had the most remarkable day yesterday... My White Blood Count soared to a whopping 6.3 -- completely in the normal range now. (The nurse just came in when writing this and said that today it is 8.6 and that my platelets are up to 90K!) This has allowed me to get off the neutropenic diet in the hospital (i.e. no fresh fruit or vegetables) that I've been on for 6 weeks and have my first salad yesterday!
My main oncologist, Dr. Pollikoff, just came by... I'll be definitely getting the spinal chemo on Monday and then discharged from the hospital for almost 2 weeks!!!! When I return I will begin the third module of the chemo...something called mexathrexate... which goes into the brain. They will need to do a kidney flush because of the toxic amount of chemo in my system, but the doc said it will not be as difficult as the first two modules and has a much shorter recovery time. Such a relief to hear that.
Yesterday I met with a wonderful contemplative Catholic priest -- Father Justin. (For those of you who have read any of Father Thomas Keating's writings, Father Justin's philosophy is very similar.) Peter knows him and arranged for him to come to my hospital room. We talked about Christ Consciousness, about surrendering the self (false self), opening into a more expanded awareness of the mystical nature of Christ and the Divine. I found it deeply stirring. He was refreshingly authentic and real.
I took much of what we spoke about into my meditation this morning, gently surrendering this body, personality and self into an expanded space. To me, surrender is not having to "do" anything and cannot be forced.... it's just a gentle opening and turning over and release. I experienced a very special sense of well-being, and from there the whole morning unfolded with such good news. I have needed a day like this. The beautiful silvery clouds outside my window give way now and then to a brilliant sun....a metaphor for my hospital journey. The sun came out today in my treatment and I can see, for the first time, that I AM making it through this, that life is full and good, that I am well on my way toward total healing.
Dr. Pollikoff is giving me a "day pass" tomorrow of about two hours, so Peter and I will take a drive and maybe stop somewhere yummy for a bite. It's hard to believe that soon I'll be able to get out of this hospital gown and into my jeans and sweaters. Maybe this next week I'll go wig shopping! Blond? Red head? Brunette? I will have fun choosing.
Sending each of you my love and gratitude for your continued interest, care, friendship and love. I couldn't make it through this without you.
Heidi
Thursday, January 6, 2011
Good Thursday morning to everyone,
I got some good news yesterday -- my WBC (white blood count) went up quite a bit. Both my doctors overseeing my treatment were all smiles. They are beginning to talk about doing the lumbar puncture and spinal chemo within the next few days, depending on my numbers continuing to go up...and then sending me home for a week. Oh, how I long to see my little casita (home), sleep in my own bed, eat a healthier diet. Spinach, Kale, brussel sprouts, homemade soup....sound so good to me after 6 weeks in the hospital!
Dr. Liow said I am getting close to being half way through with the hospital part of the treatment, though he wasn't sure. He will tell me tomorrow. I felt euphoric at the news, though I have a feeling it's only about a third completed. It might not seem to be a big deal, but 1/3 versus 1/2 way through seem lightyears apart to me. Time shifts and changes in some unusual ways when in a confined situation with little control. That's why there is great wisdom in just focusing on the present. When the half way mark comes, however, it will be a wonderful turning point. I will see the light at the end of this dark, difficult tunnel (made brighter by all my friends and the gifts of divine love that have been unmistakably present).
Dr. Liow mentioned once again how difficult the treatment for Leukemia is. He said that the chemo they use is more toxic, more difficult than any of the other chemos for other types of cancers. My little, brave body has held up so well under the onslaught! I talk to my cells and organs all the time and tell them to hang in there....that one day they will be cleansed, purified, fortified with wonderful whole foods and supplements, and that this will all one day be a distant dream.
This journey has been working deeply in my soul, bringing transformation that perhaps could not have come in any other way. There is absolutely nothing that gets your attention than a life/death situation. From one day to the next -- everything was different for me. There was little time to prepare. I saw how quickly I declined in just a week -- from walking to being in a wheelchair all within days. It brought me to the edge, you might say, very quickly, where the only place to turn was within, to my inner strength and to the Divine. Everything else slipped away -- all except my loved ones. When I've been down, there is always a friend who can lift me up with a word of good cheer, an insight, or just a warm understanding of my circumstances. That gives me the strength to get through another hour, another day.
One of the beautiful lessons for me is to see how Love shows up in so many ways, in so many forms. It transcends belief systems. The sweetest Baptist nurse prayed with me the other morning. Tears ran down my cheeks -- so touching was her sincerity and kindness. The hospital Chaplain just poked his head in my door and will come back soon, again to pray with me. I love connecting with people of all belief systems and religions seeing that underneath them all there is a oneness, a common thread of humanity, tying us all together.
The dearest woman who gives me a foot massage each week is donating her time to help me. She won't accept any payment as she said it brings her joy to help me. I got permission from the nurse to get her business cards into the hospital and the nurse will be telling other patients about her so that will increase her business. How wonderful it feels to be helping her out for the kindness she has shown me.
There is so much I want to share with all of you...so many revelations, insights, new understandings. I know when this is all over I will have seen it as the greatest blessing in my life....But I do need to get through it first, and I do have my ups and downs!
Sending love to all of you.
Heidi
I got some good news yesterday -- my WBC (white blood count) went up quite a bit. Both my doctors overseeing my treatment were all smiles. They are beginning to talk about doing the lumbar puncture and spinal chemo within the next few days, depending on my numbers continuing to go up...and then sending me home for a week. Oh, how I long to see my little casita (home), sleep in my own bed, eat a healthier diet. Spinach, Kale, brussel sprouts, homemade soup....sound so good to me after 6 weeks in the hospital!
Dr. Liow said I am getting close to being half way through with the hospital part of the treatment, though he wasn't sure. He will tell me tomorrow. I felt euphoric at the news, though I have a feeling it's only about a third completed. It might not seem to be a big deal, but 1/3 versus 1/2 way through seem lightyears apart to me. Time shifts and changes in some unusual ways when in a confined situation with little control. That's why there is great wisdom in just focusing on the present. When the half way mark comes, however, it will be a wonderful turning point. I will see the light at the end of this dark, difficult tunnel (made brighter by all my friends and the gifts of divine love that have been unmistakably present).
Dr. Liow mentioned once again how difficult the treatment for Leukemia is. He said that the chemo they use is more toxic, more difficult than any of the other chemos for other types of cancers. My little, brave body has held up so well under the onslaught! I talk to my cells and organs all the time and tell them to hang in there....that one day they will be cleansed, purified, fortified with wonderful whole foods and supplements, and that this will all one day be a distant dream.
This journey has been working deeply in my soul, bringing transformation that perhaps could not have come in any other way. There is absolutely nothing that gets your attention than a life/death situation. From one day to the next -- everything was different for me. There was little time to prepare. I saw how quickly I declined in just a week -- from walking to being in a wheelchair all within days. It brought me to the edge, you might say, very quickly, where the only place to turn was within, to my inner strength and to the Divine. Everything else slipped away -- all except my loved ones. When I've been down, there is always a friend who can lift me up with a word of good cheer, an insight, or just a warm understanding of my circumstances. That gives me the strength to get through another hour, another day.
One of the beautiful lessons for me is to see how Love shows up in so many ways, in so many forms. It transcends belief systems. The sweetest Baptist nurse prayed with me the other morning. Tears ran down my cheeks -- so touching was her sincerity and kindness. The hospital Chaplain just poked his head in my door and will come back soon, again to pray with me. I love connecting with people of all belief systems and religions seeing that underneath them all there is a oneness, a common thread of humanity, tying us all together.
The dearest woman who gives me a foot massage each week is donating her time to help me. She won't accept any payment as she said it brings her joy to help me. I got permission from the nurse to get her business cards into the hospital and the nurse will be telling other patients about her so that will increase her business. How wonderful it feels to be helping her out for the kindness she has shown me.
There is so much I want to share with all of you...so many revelations, insights, new understandings. I know when this is all over I will have seen it as the greatest blessing in my life....But I do need to get through it first, and I do have my ups and downs!
Sending love to all of you.
Heidi
Monday, January 3, 2011
Hi Everyone,
All is well, though my blood counts did not respond as well as we hoped to the transfusions yesterday. Am having another platelet transfusion soon, as I need to get my "blood clotting factor" higher to avoid hemmoraging. Generally this isn't such a concern for Leukemia, but I got those blood clots a few weeks ago and am on Heprin now (which thins my blood). It's a bit complicated, so won't bore you with all the details. Am doing well in general, with the expected and unexpected ups and downs...
Tomorrow will probably be moved back to the Chemo unit. Am hoping to go home by the weekend so I can have at least a few days in my own space before going into the next round. It's incredible to think that I've been in here since before Thanksgiving and have missed ALL the rain we've had in San Diego.... Looking out my window now I can tell it's cold and crisp. A few clouds are lit up by the setting sun. Peter is coming by soon and we'll probably watch more of the 3rd season of the 24 TV series, which, by the way, is incredibly well done and a very exciting season, if you like that sort of thing. He's making some green vegetables for me for dinner. I SO miss my veggies! They have very few here in the hosp.
My hosp. window looks out on the floor where they deliver babies.... So sweet to think of these precious lives coming into the world. I look up there often to remind myself of the cycle of life and that everything has a purpose and a plan....
All is well, though my blood counts did not respond as well as we hoped to the transfusions yesterday. Am having another platelet transfusion soon, as I need to get my "blood clotting factor" higher to avoid hemmoraging. Generally this isn't such a concern for Leukemia, but I got those blood clots a few weeks ago and am on Heprin now (which thins my blood). It's a bit complicated, so won't bore you with all the details. Am doing well in general, with the expected and unexpected ups and downs...
Tomorrow will probably be moved back to the Chemo unit. Am hoping to go home by the weekend so I can have at least a few days in my own space before going into the next round. It's incredible to think that I've been in here since before Thanksgiving and have missed ALL the rain we've had in San Diego.... Looking out my window now I can tell it's cold and crisp. A few clouds are lit up by the setting sun. Peter is coming by soon and we'll probably watch more of the 3rd season of the 24 TV series, which, by the way, is incredibly well done and a very exciting season, if you like that sort of thing. He's making some green vegetables for me for dinner. I SO miss my veggies! They have very few here in the hosp.
My hosp. window looks out on the floor where they deliver babies.... So sweet to think of these precious lives coming into the world. I look up there often to remind myself of the cycle of life and that everything has a purpose and a plan....
Sunday, January 2, 2011
Happy New Year!
Dear family and friends,
I hope everyone has had a wonderful New Year's holiday, with good food, good friends and good times!
I have not written in my blog recently as it's been a rough few days and I've needed to gather my inner forces.... The chemo of last weekend began to take effect towards the end of this week. By this I mean that the chemo takes a few days to saturate the cells and they begin to die off. This sets up a whole chain reaction internally, as you can imagine, with pain and nausea! By Friday I was pretty much laid out most of the day and have been sleeping off and on since, with an occasional much-appreciated visitor. With my blood counts extremely low again, it's only been possible for me to walk a few steps without getting dizzy so I've been confined to my bed. Today they are giving me several types of blood transfusions and -- as I write this -- I'm beginning to feel stronger. I look at the blood dripping into my veins and wonder who it came from... What's the story of that person's life? Am so grateful to be feeling a little better through someone's kindness.
I had another atrial fibrillation episode Thursday night so they moved me to the heart floor where they could monitor me more closely. They will most likely move me back to the chemo floor tomorrow. I'm getting to know quite a few of the nursing staff in this hospital! The sweetest, motherly nurse has been on the night shift the last few nights. She rubbed lotion onto my back and legs. Little extras are so amazing in a situation like this. It only took her a few mins., but I'll remember her kindness when looking back on my hospital stay for years to come.
My endurance is certainly getting stretched more than at any other time in my life. I think it's safe to say that every positive quality I have aspired to attain is getting shaken and stirred. I visualize myself a year from now looking back at all I will have learned from this experience. A year seems so far away right now, but time does pass exceedingly fast. I've been in the hospital 1 1/2 months already.... Soon it will be two, then three and at six months I will have reached the end of the induction part of the treatment -- a true cause for celebration.
In the midst of it all I just keep focused on making it through the day with the help of my loved ones. You all mean more to me than words can say.
Heart's Love,
Heidi
I hope everyone has had a wonderful New Year's holiday, with good food, good friends and good times!
I have not written in my blog recently as it's been a rough few days and I've needed to gather my inner forces.... The chemo of last weekend began to take effect towards the end of this week. By this I mean that the chemo takes a few days to saturate the cells and they begin to die off. This sets up a whole chain reaction internally, as you can imagine, with pain and nausea! By Friday I was pretty much laid out most of the day and have been sleeping off and on since, with an occasional much-appreciated visitor. With my blood counts extremely low again, it's only been possible for me to walk a few steps without getting dizzy so I've been confined to my bed. Today they are giving me several types of blood transfusions and -- as I write this -- I'm beginning to feel stronger. I look at the blood dripping into my veins and wonder who it came from... What's the story of that person's life? Am so grateful to be feeling a little better through someone's kindness.
I had another atrial fibrillation episode Thursday night so they moved me to the heart floor where they could monitor me more closely. They will most likely move me back to the chemo floor tomorrow. I'm getting to know quite a few of the nursing staff in this hospital! The sweetest, motherly nurse has been on the night shift the last few nights. She rubbed lotion onto my back and legs. Little extras are so amazing in a situation like this. It only took her a few mins., but I'll remember her kindness when looking back on my hospital stay for years to come.
My endurance is certainly getting stretched more than at any other time in my life. I think it's safe to say that every positive quality I have aspired to attain is getting shaken and stirred. I visualize myself a year from now looking back at all I will have learned from this experience. A year seems so far away right now, but time does pass exceedingly fast. I've been in the hospital 1 1/2 months already.... Soon it will be two, then three and at six months I will have reached the end of the induction part of the treatment -- a true cause for celebration.
In the midst of it all I just keep focused on making it through the day with the help of my loved ones. You all mean more to me than words can say.
Heart's Love,
Heidi
Subscribe to:
Posts (Atom)