Sunday, March 31, 2013
Thursday, March 28, 2013
what matters most...people put in our paths
What matters most? That question has been pushed front and center. It's not that it's vital that one quantifies the things that matter and then comes up with a tally...but as a person who has faced my mortality by learning I was a hostess to stage iv ovarian cancer, I am thinking about what I want to really do with the rest of my life. I have longed for the Northcoast of CA as I have laid in pain. I have mind-traveled to places near and dear, and lo and behold, those places are out west. And I had nearly sold this home to move back there about a year and a half ago. Since then, so very much has happened. I feel certain I was led to stay for some specific things to happen as they were meant to.
As I faced a certain reality I had not acknowledged as such last night, I talked my way through an evaluation of sorts. And I felt like the cosmic jokers were at it yet again. What do I value more? Love and nurturing and companionship or being in a place where I feel my sense of place? A place where one feels spiritual renewal when breathing in the unpolluted air and looking at some of the most gorgeous scenery that can be imagined or found anywhere. Anywhere. There is no way to explain being dwarfed to a place where you truly understand your place on the planet as a human in the presence of ancient redwoods. I touch their bark and cry tears which clarify and sanctify. I long for such things because I have experienced them and know their value in my life. And to juxtaposition the images of the Northcoast to the area where I reside is difficult and in some ways painful for me. But...and...geez...this is where I have found something so calming, intuitive, rich, rewarding, easy, beautiful, kind and loving in a budding bond with another being. I value each as integral parts of a healthy and balanced life.
I leave this topic alone for now ...because now is what I have and I am still in cancer treatment here. But after the roller coaster ride the topic piqued, I was up into the wee witching hours this morning and did not get nearly enough rest. After five hours of sleep, followed by 2 hours of laying on the bed resting, I got up and had coffee, straightened up the house and got ready to join my cousin and aunt for lunch. I feel so happy to be well enough to go out for lunch and made this an exception day for eating in that I chose an Italian restaurant where there is no organic anything. Ditto for the Italian bakery stop afterwards! And I thoroughly enjoyed my time with my family! Thoroughly. The conversation, delicious wine and delicious food...all linger as I sit comfortably reminiscing. What occurred at the restaurant, the hap-in-stance encounter between the waitress and I is yet another example of how my cool life rolls.
The waitress began with an odd attitude that we all noted. She seemed a bit huffy and impatient. But tha shifted...and after a couple of interactions she came up to me and asked, "Is that a wig you have on?" I had no reason to lie. She asked, "Cancer?" I confirmed with a simple yes. She then went on to say, "I asked because I had the same wig in a different color." Amazing! That intro led us to discuss, over the course of all of her table stops, her cancer, her experiences...her story. At least some of it. And Vicky gave me her phone number so that I can feel free to call her for support and further conversation.
How rich life is to bring such encounters my way. Not only did I enjoy my time with Terry and Aunt Doris, my eggplant parm and salad, my Gnarly Head red wine, but also meeting a stranger who turned soft and transparent and shared from her heart, exposing our commonalities. I expect to call Vicky one day in the near future. I think there is more to be shared.
I am now contemplating one short outing to one store hoping to truly luck out and find a gift I would like to get. Thereafter, couch time and then if possible, I shall watch the NCAA basketball tournament game featuring the areas favorite children, the Orange. The phenomenon of sports as a bonding agent is not something I'm gonna touch any further than this sentence today. I'm looking out at stripes of a beautiful bluish turquoise hue in my western skyline. It was warm enough today that I swept off the deck and did so without a coat! Ok, so it was only for a minute...because it is not warm, but warming. Warming with lengthening days makes for one hopeful woman, glad for the fact spring is springing here. And I am ready. Ready for growth and life and renewal...and more things good.
As I faced a certain reality I had not acknowledged as such last night, I talked my way through an evaluation of sorts. And I felt like the cosmic jokers were at it yet again. What do I value more? Love and nurturing and companionship or being in a place where I feel my sense of place? A place where one feels spiritual renewal when breathing in the unpolluted air and looking at some of the most gorgeous scenery that can be imagined or found anywhere. Anywhere. There is no way to explain being dwarfed to a place where you truly understand your place on the planet as a human in the presence of ancient redwoods. I touch their bark and cry tears which clarify and sanctify. I long for such things because I have experienced them and know their value in my life. And to juxtaposition the images of the Northcoast to the area where I reside is difficult and in some ways painful for me. But...and...geez...this is where I have found something so calming, intuitive, rich, rewarding, easy, beautiful, kind and loving in a budding bond with another being. I value each as integral parts of a healthy and balanced life.
I leave this topic alone for now ...because now is what I have and I am still in cancer treatment here. But after the roller coaster ride the topic piqued, I was up into the wee witching hours this morning and did not get nearly enough rest. After five hours of sleep, followed by 2 hours of laying on the bed resting, I got up and had coffee, straightened up the house and got ready to join my cousin and aunt for lunch. I feel so happy to be well enough to go out for lunch and made this an exception day for eating in that I chose an Italian restaurant where there is no organic anything. Ditto for the Italian bakery stop afterwards! And I thoroughly enjoyed my time with my family! Thoroughly. The conversation, delicious wine and delicious food...all linger as I sit comfortably reminiscing. What occurred at the restaurant, the hap-in-stance encounter between the waitress and I is yet another example of how my cool life rolls.
The waitress began with an odd attitude that we all noted. She seemed a bit huffy and impatient. But tha shifted...and after a couple of interactions she came up to me and asked, "Is that a wig you have on?" I had no reason to lie. She asked, "Cancer?" I confirmed with a simple yes. She then went on to say, "I asked because I had the same wig in a different color." Amazing! That intro led us to discuss, over the course of all of her table stops, her cancer, her experiences...her story. At least some of it. And Vicky gave me her phone number so that I can feel free to call her for support and further conversation.
How rich life is to bring such encounters my way. Not only did I enjoy my time with Terry and Aunt Doris, my eggplant parm and salad, my Gnarly Head red wine, but also meeting a stranger who turned soft and transparent and shared from her heart, exposing our commonalities. I expect to call Vicky one day in the near future. I think there is more to be shared.
I am now contemplating one short outing to one store hoping to truly luck out and find a gift I would like to get. Thereafter, couch time and then if possible, I shall watch the NCAA basketball tournament game featuring the areas favorite children, the Orange. The phenomenon of sports as a bonding agent is not something I'm gonna touch any further than this sentence today. I'm looking out at stripes of a beautiful bluish turquoise hue in my western skyline. It was warm enough today that I swept off the deck and did so without a coat! Ok, so it was only for a minute...because it is not warm, but warming. Warming with lengthening days makes for one hopeful woman, glad for the fact spring is springing here. And I am ready. Ready for growth and life and renewal...and more things good.
Wednesday, March 27, 2013
Meeting w my chemo nurse
Awoke to sunshine, which is always a big plus. Since my chemo last Tuesday, this morning was the first that I felt up to cooking breakfast. I cooked org spinach, added two scrambled eggs and spices and then a little shredded mozzarella. Yum. Also took all supplements as should occur in the morning. In other words, I am markedly closer to being back to me. I am grateful.
I'm glad my weight is back down from the steroid inflated state I was in last week, too. My blood pressure has been excellent and continues to be. But today, after the needle was inserted into the port and it was flushed with saline solution (which is tasted and inhaled at the same time and is not at all pleasant), I began to feel faint as the blood draw began. By the time the last saline flush occurred, I asked for orange juice and mentioned I felt faint. I had tears welling, feeling crappy yet again and truly hating such feelings and vulnerability. The nurse got a wheelchair and I did not like the feeling as she pushed me to the appointment with nurse, Carolyn. Dang. I just needed some juice and a moment. I received and drank a cup of cool, delicious orange juice and felt better.
Carolyn asked me out of the chair as soon as she saw me in it. Too pathetic for us both and - thankfully - unnecessary. The lengthy conversation with Carolyn went really well. We went over all of my past week and how I felt. As for the Neulasta, she finds the pain level and duration of such to be unacceptable. Me, too! Accompanied with my cost share of the shot causing a lot of stress, Carolyn is going to consult with Dr. Puc about foregoing the shot next time. I like that I never had to ask her to do so. Our discussion led her to offer such. Carolyn acknowledges my low spirits during the worst of it and the pitiful aloneness as quite understandable. She has asked me to get my daughter, Hannah, who cared for me fully after my first chemo, and who knows and understands my nearly pathological aversion to pharmaceuticals, to send me a voicemail I can play as needed, encouraging me with the right temperament to take recommended meds despite being hugely turned off to doing so. The idea seems like a good one. Upon going over all of my labs, Carolyn tells me I am really doing great. All lab results are in great ranges and she finds the CA 125 number of 7.9 following a 90.5 to be phenomenal... and yes, it can only mean the chemo is eliminating the cancer. As I divulged my devested interest in the six-round chemo schedule, she cautioned me. She explained the theory in making double-dog sure (my words) the cancer is truly bombarded into oblivion and it equates to 10 or 15 more years of life....and in that vein, yes, three more rounds is totally tolerable. However, after the PET scan results, a conversation about the treatment plans will be had with both Dr. Puc and Dr. Cunningham, my gynecologic oncology surgeon. So how many more treatments is to be revealed, but I am halfway through the course at minimum.
I am writing this blog while reclined and infusing with Vitamin C. It is always cool in this room, a necessary which is something I don't totally understand nor like. I am under a once heated blanket, feeling like I need to stop holding the ipad and keyboarding so I can get my hands under the blanket to gain warmth. After the infusion concludes, I will scurry way across town to the eastern Hemotology Oncology campus for the gynecological cancers support group. I never know what such opportunities will produce, but am open. A pearl of advise or additional support is welcome.
I have received some positive feedback about this blog, predominantly read by my friends. I hope there is a way for the larger community-at-large to gain access and pearls. I believe there is a need for real stories to reveal what would otherwise only be learned via experience...particularly for those about to journey down the path I am on. So feel free to share the site with others as you feel appropriate. While I enjoy writing and know I benefit from doing so, I desire it to be helpful to others, too.
I'm glad my weight is back down from the steroid inflated state I was in last week, too. My blood pressure has been excellent and continues to be. But today, after the needle was inserted into the port and it was flushed with saline solution (which is tasted and inhaled at the same time and is not at all pleasant), I began to feel faint as the blood draw began. By the time the last saline flush occurred, I asked for orange juice and mentioned I felt faint. I had tears welling, feeling crappy yet again and truly hating such feelings and vulnerability. The nurse got a wheelchair and I did not like the feeling as she pushed me to the appointment with nurse, Carolyn. Dang. I just needed some juice and a moment. I received and drank a cup of cool, delicious orange juice and felt better.
Carolyn asked me out of the chair as soon as she saw me in it. Too pathetic for us both and - thankfully - unnecessary. The lengthy conversation with Carolyn went really well. We went over all of my past week and how I felt. As for the Neulasta, she finds the pain level and duration of such to be unacceptable. Me, too! Accompanied with my cost share of the shot causing a lot of stress, Carolyn is going to consult with Dr. Puc about foregoing the shot next time. I like that I never had to ask her to do so. Our discussion led her to offer such. Carolyn acknowledges my low spirits during the worst of it and the pitiful aloneness as quite understandable. She has asked me to get my daughter, Hannah, who cared for me fully after my first chemo, and who knows and understands my nearly pathological aversion to pharmaceuticals, to send me a voicemail I can play as needed, encouraging me with the right temperament to take recommended meds despite being hugely turned off to doing so. The idea seems like a good one. Upon going over all of my labs, Carolyn tells me I am really doing great. All lab results are in great ranges and she finds the CA 125 number of 7.9 following a 90.5 to be phenomenal... and yes, it can only mean the chemo is eliminating the cancer. As I divulged my devested interest in the six-round chemo schedule, she cautioned me. She explained the theory in making double-dog sure (my words) the cancer is truly bombarded into oblivion and it equates to 10 or 15 more years of life....and in that vein, yes, three more rounds is totally tolerable. However, after the PET scan results, a conversation about the treatment plans will be had with both Dr. Puc and Dr. Cunningham, my gynecologic oncology surgeon. So how many more treatments is to be revealed, but I am halfway through the course at minimum.
I am writing this blog while reclined and infusing with Vitamin C. It is always cool in this room, a necessary which is something I don't totally understand nor like. I am under a once heated blanket, feeling like I need to stop holding the ipad and keyboarding so I can get my hands under the blanket to gain warmth. After the infusion concludes, I will scurry way across town to the eastern Hemotology Oncology campus for the gynecological cancers support group. I never know what such opportunities will produce, but am open. A pearl of advise or additional support is welcome.
I have received some positive feedback about this blog, predominantly read by my friends. I hope there is a way for the larger community-at-large to gain access and pearls. I believe there is a need for real stories to reveal what would otherwise only be learned via experience...particularly for those about to journey down the path I am on. So feel free to share the site with others as you feel appropriate. While I enjoy writing and know I benefit from doing so, I desire it to be helpful to others, too.
Tuesday, March 26, 2013
sensitivities
A couple of days have scooted by. I received many calls Monday and chatted with several friends. I also handled business calls and paid bills. I've viewed and am aware of all of the medical bills. At this point a few insurance claims are arriving daily. I get to see what my cost share is going to be before the actual bills arrive. I feel a bit shocked by a few things. One is the cost of the Neulasta shot...charged out to insurance at over $7000, the insurance approves almost $3000 and my cost share is over $700 each! This is the shot that makes all my bones ache and stimulates white blood cell growth in the bone marrow. Today I decided to read about high dose Vitamin C infusions on the internet and now believe that those stimulate white blood cell growth; now I naturally feel the need to discuss this tomorrow with the doctor's chemo nurse. She can go ask the doctor while I infuse. But if there is any way to eliminate that shot starting the next chemo, I am all in favor. I'd like to try without it, just to see.
At this point, I am feeling only better and not well as is usual a week after chemo. I believe this indicates the chemo is saturating me, or starting to tax my body as it has accumulated. All of the above is on my agenda to discuss tomorrow with nurse and subsequently the next time I see the doctor.
I'm quite sensitive these days. I have done some crying...and have done much soul searching about the things which have bothered me. I've done my best to hone in on what the problem is and then to try to speak up, inquire and move past. For me, this represents a leap forth...growing...willing to risk the awkwardness of revealing my feelings, perceptions and issues to people who matter, so as not to let unresolved hurts or misunderstandings fester. It's interesting how perceptions and intentions do not match up sometimes...and yet the perceptions are the interpreters reality. I'm learning and growing, proof positive I'm alive.
Today had some time spent thinking...some time spent trying to figure out what appealed to me to eat...some time with my counselor, herself a cancer survivor. I reality check with her and sometimes get feedback about whether or not my notions and interpretations are off base or not. I like the connection we share and feel we work well together. That is a blessing. I am a fan of having a counselor in one's life during challenging times.
By the time I completed my errand of recycling after the appointment, I was extremely hungry and too tired to even go directly into the house. I sat in the car, checking email and resting. I figured out what I could make a meal of and got up the stairs and at it. I ate tempeh, a sweet potato and toast with cheese on it and felt like I had consumed what my body needed. Hooray. Still being nauseous a week later and not real turned on to food is a shift I am not loving. So, the goal then is to hope I see some improvement daily and that I do eat enough nourishing food.
I am heading to bed with an agenda for tomorrow that includes: bloodwork drawn, appointment with my chemo nurse, Vitamin C infusion and making it to a gynecological cancer support group meeting for the first time since I learned of it. It meets once a month and I feel like I can benefit from joining. I will need to plan for being out of the house for many hours and have ample food and beverage with me. I see that as another weakness I need to improve. I am really trying to find balance in all endeavors and aspects of life. Amen.
At this point, I am feeling only better and not well as is usual a week after chemo. I believe this indicates the chemo is saturating me, or starting to tax my body as it has accumulated. All of the above is on my agenda to discuss tomorrow with nurse and subsequently the next time I see the doctor.
I'm quite sensitive these days. I have done some crying...and have done much soul searching about the things which have bothered me. I've done my best to hone in on what the problem is and then to try to speak up, inquire and move past. For me, this represents a leap forth...growing...willing to risk the awkwardness of revealing my feelings, perceptions and issues to people who matter, so as not to let unresolved hurts or misunderstandings fester. It's interesting how perceptions and intentions do not match up sometimes...and yet the perceptions are the interpreters reality. I'm learning and growing, proof positive I'm alive.
Today had some time spent thinking...some time spent trying to figure out what appealed to me to eat...some time with my counselor, herself a cancer survivor. I reality check with her and sometimes get feedback about whether or not my notions and interpretations are off base or not. I like the connection we share and feel we work well together. That is a blessing. I am a fan of having a counselor in one's life during challenging times.
By the time I completed my errand of recycling after the appointment, I was extremely hungry and too tired to even go directly into the house. I sat in the car, checking email and resting. I figured out what I could make a meal of and got up the stairs and at it. I ate tempeh, a sweet potato and toast with cheese on it and felt like I had consumed what my body needed. Hooray. Still being nauseous a week later and not real turned on to food is a shift I am not loving. So, the goal then is to hope I see some improvement daily and that I do eat enough nourishing food.
I am heading to bed with an agenda for tomorrow that includes: bloodwork drawn, appointment with my chemo nurse, Vitamin C infusion and making it to a gynecological cancer support group meeting for the first time since I learned of it. It meets once a month and I feel like I can benefit from joining. I will need to plan for being out of the house for many hours and have ample food and beverage with me. I see that as another weakness I need to improve. I am really trying to find balance in all endeavors and aspects of life. Amen.
Sunday, March 24, 2013
Lucky, lucky me
My funk was halted with caring, love, sunshine, and nature carried forth via a leisurely drive in areas I had never been. On yet another day that I was not feeling at all well, I am very grateful that Ed knew what to do...he came and picked me up and took me to a forest called Frozen Ocean. It was high up on a hill top and it was very quiet and pretty and tranquil up there. In the evening, for the first time in a long, long while, I had organic bacon, naturally apple-wood smoked...delicious and what I craved after days of very little to eat and chemo residual health matters.
I am tired, satisfied and ready to rest well. I feel hugely grateful to Ed. I look forward to feeling better tomorrow, for I think it likely now. Phew...
Sun day
I am projecting sunshine. I want a sunny day, metaphorically and otherwise. I feel better. I cannot stray much past that one word descriptive. I don't want to quantify "better".
I'm in quite the transformation process. That is what I am coming to see it as. I am different than yesterday and the day before. That is true for each of us daily. However, I sense the differences as deeper. Right now, I am more cynical. Humbled to my knees, yet edgy.
I'm so hungry for something hearty. The rebel in me wants to get up and get in the car and go to the store and buy some raised clean, hormone and chemical free meat. Sausage to be exact. And I want something with it. The rebel wants to make this happen for herself so much...but reality is she/I can't. And therein is the struggle. I feel bitter that my most basic needs must go to the wayside right now. I do have the ability to get up and get myself something to eat. And that is what I will have to do. When I am better, I will be able to meet my needs again. I had a conversation last night with my new friend and cancer mentor who is ten years cancer free! She assured me that all the ways I was feeling were understandable and fine to feel. She boiled it down: your basic needs are not being met. I cried harder hearing those words. But I knew she was right. And I knew it would be temporary. I knew it felt difficult, awful and that I was struggling internally over knowing my self-worth and still not being able to get my basic needs met. Not long after the conversation of realizations, Patty came over. She texted and offered and showed up. After barreling into the driveway, she got the shovel and cleared the end very well. She came in, and cared for me. And that got me past the sadness. The night ended so much better than it would have had Pat not stopped to help.
But back to today. I put aside what I wished I could have and went into the kitchen to get what was available. I knew I needed wholesome, clean, high quality food. I have not been well...gastrointestinally; things are off...this is not time to deviate from healthy eating. I put together a handful of organic cereal, vanilla yogurt, greek yogurt ( a little of each), org. blueberries and a banana. I enjoyed each bite to the best of my ability. Chemo seems to have removed the appeal food once had. I hope to get a small grocery run in soon. I feel the need for meat so will try to take heed.
I have a kind offer to take a ride today. But I seem to be alienating myself. Bitter at the world-at-large for me, the once independent doer, to find herself so weak. Unable to even state a need directly. Hoping to be figured out so as not to have to further humble myself. So complex we are, we humans. I am going to get myself dressed for the first time in three days. I am going to try to find another something to eat that gives me more strength...and to hope to show my gratitude to my ride when he shows up. I am in a fragile place I hope to grow past godspeed.
I'm in quite the transformation process. That is what I am coming to see it as. I am different than yesterday and the day before. That is true for each of us daily. However, I sense the differences as deeper. Right now, I am more cynical. Humbled to my knees, yet edgy.
I'm so hungry for something hearty. The rebel in me wants to get up and get in the car and go to the store and buy some raised clean, hormone and chemical free meat. Sausage to be exact. And I want something with it. The rebel wants to make this happen for herself so much...but reality is she/I can't. And therein is the struggle. I feel bitter that my most basic needs must go to the wayside right now. I do have the ability to get up and get myself something to eat. And that is what I will have to do. When I am better, I will be able to meet my needs again. I had a conversation last night with my new friend and cancer mentor who is ten years cancer free! She assured me that all the ways I was feeling were understandable and fine to feel. She boiled it down: your basic needs are not being met. I cried harder hearing those words. But I knew she was right. And I knew it would be temporary. I knew it felt difficult, awful and that I was struggling internally over knowing my self-worth and still not being able to get my basic needs met. Not long after the conversation of realizations, Patty came over. She texted and offered and showed up. After barreling into the driveway, she got the shovel and cleared the end very well. She came in, and cared for me. And that got me past the sadness. The night ended so much better than it would have had Pat not stopped to help.
But back to today. I put aside what I wished I could have and went into the kitchen to get what was available. I knew I needed wholesome, clean, high quality food. I have not been well...gastrointestinally; things are off...this is not time to deviate from healthy eating. I put together a handful of organic cereal, vanilla yogurt, greek yogurt ( a little of each), org. blueberries and a banana. I enjoyed each bite to the best of my ability. Chemo seems to have removed the appeal food once had. I hope to get a small grocery run in soon. I feel the need for meat so will try to take heed.
I have a kind offer to take a ride today. But I seem to be alienating myself. Bitter at the world-at-large for me, the once independent doer, to find herself so weak. Unable to even state a need directly. Hoping to be figured out so as not to have to further humble myself. So complex we are, we humans. I am going to get myself dressed for the first time in three days. I am going to try to find another something to eat that gives me more strength...and to hope to show my gratitude to my ride when he shows up. I am in a fragile place I hope to grow past godspeed.
Saturday, March 23, 2013
Regrouping...
...got through the night. HuluPlus national park and national monument segments filled the evening, one after the next. I dozed as was possible in between. The joint pain was indescribable. What a fine line it really is, that invisible finest of fine that keeps one on the sunny side. I have not been able to stay on the sunny side this round. Yesterday I felt needy, and I hated knowing my needs were demanding more than folks really cared to give. I feel bruised from what is going on. More mending to do. I have to accept my needs will push; they are pushing me hard. Gotta find the balance...the way to get up and care for myself, whether or not I am up to it at a given moment. Or adjust. Hmm.
Right now I realize the nature segments during the evening and into today were perfect. I get my spiritual renewal through nature. It has been my path since way, way back. Way back when we drove through the Adirondacks when I was a kid and I wanted my dad to pull over so we could get out and see...over and over again. Oh and they gave me a snapshot camera! That was always me. Last night, I re-visited Yosemite for the first time since I was 17. I had memories resurge of the ride into the valley in the back of a pick up...Patty, Opal and I were hitchhiking.. A whole lot of detail came back to mind. And again I am amazed at what a fine thing the mind is. When it wants to be friendly. Or is it when the sunny side is walked? The memories of Yosemite and the wonderful videos I viewed have me definitely wanting to return there. I have so much living I want to do. Oh yes. And that, that desire has to be the determinate of determinates. The ultimate trump card in this mix.
Turns out I was awake a lot during the night and each time I looked out it was snowing. Today, the sky is vivid blue, there are clouds, the trees have fresh snow on them and it looks pretty out. The vivid blue sky is indicative of at least partial sunshine. And that is what makes the biggest difference. As I sit here contemplating the bath I ran way too hot so that I could just walk in leisurely and get in when I am ready (and the unspoken is the water temp will be just right at that point in time when I am ready), I hope somehow after my bath to feel much better...then in a perfect world I would get company or some offer to take a ride...somewhere, anywhere...where I could sit and look out at the scenery. Go somewhere, feel a part of...but with no such offers even remotely in the mix, I suspect I will be in the house today and I shall try to accomplish something important. Write that important letter...scan that doc and email correspondence...I sure do not feel up to shoveling snow and maybe if it is left alone it will melt.
I have turned to this blog therapeutically during the past few days. I imagine looking back to this one day in the future and thinking "it wasn't really that bad." It isn't really. Just the other day I said aloud that I already felt I had received gifts through my cancer. The next day it seemed like the words had been too swiftly spoken as I scrambled to recall just what the heck gifts I had referred to.
Right now I realize the nature segments during the evening and into today were perfect. I get my spiritual renewal through nature. It has been my path since way, way back. Way back when we drove through the Adirondacks when I was a kid and I wanted my dad to pull over so we could get out and see...over and over again. Oh and they gave me a snapshot camera! That was always me. Last night, I re-visited Yosemite for the first time since I was 17. I had memories resurge of the ride into the valley in the back of a pick up...Patty, Opal and I were hitchhiking.. A whole lot of detail came back to mind. And again I am amazed at what a fine thing the mind is. When it wants to be friendly. Or is it when the sunny side is walked? The memories of Yosemite and the wonderful videos I viewed have me definitely wanting to return there. I have so much living I want to do. Oh yes. And that, that desire has to be the determinate of determinates. The ultimate trump card in this mix.
Turns out I was awake a lot during the night and each time I looked out it was snowing. Today, the sky is vivid blue, there are clouds, the trees have fresh snow on them and it looks pretty out. The vivid blue sky is indicative of at least partial sunshine. And that is what makes the biggest difference. As I sit here contemplating the bath I ran way too hot so that I could just walk in leisurely and get in when I am ready (and the unspoken is the water temp will be just right at that point in time when I am ready), I hope somehow after my bath to feel much better...then in a perfect world I would get company or some offer to take a ride...somewhere, anywhere...where I could sit and look out at the scenery. Go somewhere, feel a part of...but with no such offers even remotely in the mix, I suspect I will be in the house today and I shall try to accomplish something important. Write that important letter...scan that doc and email correspondence...I sure do not feel up to shoveling snow and maybe if it is left alone it will melt.
I have turned to this blog therapeutically during the past few days. I imagine looking back to this one day in the future and thinking "it wasn't really that bad." It isn't really. Just the other day I said aloud that I already felt I had received gifts through my cancer. The next day it seemed like the words had been too swiftly spoken as I scrambled to recall just what the heck gifts I had referred to.
Friday, March 22, 2013
Difficulties...
What a day. I was able to receive my Vitamin C infusion this morning. I came in on a piece of toast and drank some green and pomegranate tea. Once I completed intake with the nurses and the port was accessed, I checked email and facebook, meanwhile Ed went for breakfast and returned with oatmeal with raisins for me. A few bites had me realize it was not going to sit well. And that ill sentiment has continued with each thing I have tried to eat. Most recently I had a piece of toast with almond butter on it and it has not settled well despite 5 plus hours. Reeds Ginger Beer has provided relief and is keeping me going. Patty came by with a 4-pack and we visited. That was comforting. Since Ed left I managed to use the vacuum cleaner to eliminate the fur that WileE and Trooper left all over, however, it broke. Poof. No smoke. I can only hope it regains it's will to keep sucking it up, for I cannot envision life without a vacuum as a pet owner. Just more hurdles. Ho hum.
It is now Friday morning. It is snowing steadily. I can see inches have accumulated. I'm definitely a shut-in today. My head is groggy. I am not feeling well. My knees are swollen. I ache all over, as in every bone. No foods are appealing, and I fear eating the wrong thing. I'm drinking San Pellegrino water. I look forward to Barb bringing me some lentil soup tonight after she is out of work. I hope to be able to eat it; right now it sounds like it will be ideal. In between now and then, I have no idea what is going to be proper. I am feeling a bit lost right now. I don't want to get weak and think I have the willpower to avoid that. It feels like this road to wellness has taken a topsy-turvy turn. I find no comfort in the steady heavy snowfall. It makes me feel alone and isolated. As I think ahead I get all confused. I am alone and isolated. I miss the places from where I gain comfort. They are not here. I have no drive to take here (if I felt well and if the weather were conducive to taking a drive for the heck of it) that will bring me to a lookout from which I can feel refreshed. I make do with swamps around here at times, but I am not kidding myself. When I feel ill, I seek that which brings comfort. I have moaned for my mom, long since she has been able to comfort me. Heck, she is in her own buffered world of assisted living and has forgotten I have cancer. Moaning for her is an exercise in futility. I also think of places I would like to be and they are so far away, only my mind can safely transport me there now. Thus, I will place some effort in time traveling to the beautiful north coast of California. I can ruminate up and down the golden state's twisting roads, for I have made many a journey to think back upon. I insert highlights of the most recent trip which brought joy and warmth and water...I lay back and float upon the Atlantic Ocean from Key West...ahhh. Such wondrous memories there.
Being here now is not working well. More San Pellegrino, please, says I to I. I already knew that Friday is a very difficult day after Tuesday chemo and this one is simply put, much worse. I depart this writing aware that I do not seem on a track that is going to entertain in any way. I can only impart the fact that sometimes it gets difficult to be going through cancer treatment living alone. Those who care and care to have come to my aid as much as they are able. At the end of it all, I am by myself, wishing not to be a burden, for that brings out sadness and tears, and yet I know that I am a burden...even just to myself right now.
It is hours later and I watched Ken Burns special series on Our National Parks. I enjoyed learning new things and seeing the scenery. I napped some, and generally felt ok while viewing the shows. Barb arrived around 3:30 and I ate some soup within an hour. It was just what I needed. It settled well. I had more later. We chatted and I shared some pics. I cannot say how much I appreciate such acts of kindness. Barb brought her vacuum and ran it. It is back to me and the falling snow and the family room I am in is getting chilly. I do not feel like I can drag wood up, so I may have to go back to the other room. I have enjoyed the reprieve of hanging in here with the insert going. This bed is a bit softer and I felt it good for a shift. The bones are definitely sore. I cannot say they are less sore than last month. It seems sore is sore. Dang. I'm doing my best to get my mind settled into the here and now and being ok with how things are. I think being patient with where things are at is more difficult for me than I had recognized before, or maybe it's that this chapter is bringing out impatience at times, like it or not.
Looking forward to warmth, companionship and less pain.
It is now Friday morning. It is snowing steadily. I can see inches have accumulated. I'm definitely a shut-in today. My head is groggy. I am not feeling well. My knees are swollen. I ache all over, as in every bone. No foods are appealing, and I fear eating the wrong thing. I'm drinking San Pellegrino water. I look forward to Barb bringing me some lentil soup tonight after she is out of work. I hope to be able to eat it; right now it sounds like it will be ideal. In between now and then, I have no idea what is going to be proper. I am feeling a bit lost right now. I don't want to get weak and think I have the willpower to avoid that. It feels like this road to wellness has taken a topsy-turvy turn. I find no comfort in the steady heavy snowfall. It makes me feel alone and isolated. As I think ahead I get all confused. I am alone and isolated. I miss the places from where I gain comfort. They are not here. I have no drive to take here (if I felt well and if the weather were conducive to taking a drive for the heck of it) that will bring me to a lookout from which I can feel refreshed. I make do with swamps around here at times, but I am not kidding myself. When I feel ill, I seek that which brings comfort. I have moaned for my mom, long since she has been able to comfort me. Heck, she is in her own buffered world of assisted living and has forgotten I have cancer. Moaning for her is an exercise in futility. I also think of places I would like to be and they are so far away, only my mind can safely transport me there now. Thus, I will place some effort in time traveling to the beautiful north coast of California. I can ruminate up and down the golden state's twisting roads, for I have made many a journey to think back upon. I insert highlights of the most recent trip which brought joy and warmth and water...I lay back and float upon the Atlantic Ocean from Key West...ahhh. Such wondrous memories there.
Being here now is not working well. More San Pellegrino, please, says I to I. I already knew that Friday is a very difficult day after Tuesday chemo and this one is simply put, much worse. I depart this writing aware that I do not seem on a track that is going to entertain in any way. I can only impart the fact that sometimes it gets difficult to be going through cancer treatment living alone. Those who care and care to have come to my aid as much as they are able. At the end of it all, I am by myself, wishing not to be a burden, for that brings out sadness and tears, and yet I know that I am a burden...even just to myself right now.
It is hours later and I watched Ken Burns special series on Our National Parks. I enjoyed learning new things and seeing the scenery. I napped some, and generally felt ok while viewing the shows. Barb arrived around 3:30 and I ate some soup within an hour. It was just what I needed. It settled well. I had more later. We chatted and I shared some pics. I cannot say how much I appreciate such acts of kindness. Barb brought her vacuum and ran it. It is back to me and the falling snow and the family room I am in is getting chilly. I do not feel like I can drag wood up, so I may have to go back to the other room. I have enjoyed the reprieve of hanging in here with the insert going. This bed is a bit softer and I felt it good for a shift. The bones are definitely sore. I cannot say they are less sore than last month. It seems sore is sore. Dang. I'm doing my best to get my mind settled into the here and now and being ok with how things are. I think being patient with where things are at is more difficult for me than I had recognized before, or maybe it's that this chapter is bringing out impatience at times, like it or not.
Looking forward to warmth, companionship and less pain.
Wednesday, March 20, 2013
hiccup in the plan
When I awoke in the earliest hours of the morning, before the light of dawn shimmered in any way, I was feeling nauseous. I did the suggested things to eliminate that unpleasant feeling, but without success. These included two pharmaceuticals to bring about calm and eliminate nausea. I also vaporized mm. Nothing seemed to work. Around 11 am, I accepted a smoothie as breakfast, although I was not sure I felt up to it. The smoothie consisted of plain greek yogurt, a banana, organic blueberries, milk. It was delicious, but difficult for me to drink, so I had only half. When it was time to head to the Vitamic C infusion, I was not feeling well at all. I had been moaning and speaking in a delirious tone...being sick in the way I have found myself enacting sick for years. I felt like I was fighting off the act of throwing up for about an hour prior to leaving. The delirium grew as we drove to the infusion site. By the time I got in there, I was really ill. I wanted to hydrate with water because I was dizzy. The nurse called me and saw how ill I was and got a wheelchair. I was taken to the infusion room for evaluation. Within minutes, the nurse was astute enough to place a vomit bag in my hand and I found great relief using it. I was then given iv's of anti nausea drugs, ativan, and fluid. I was told I was not going to get a Vitamin C infusion today.
Ed went to run errands and I stayed getting all of the above-mentioned infused in my port. Having suffered with the needle and clamped insert sleeve in the port all night, I already knew I would not leave it in another night, despite the Vitamic C now scheduled for tomorrow morning. I worked with my doctor's chemo nurse as well as the infusion nurses. I inquired about the Neulasta shot I knew to be on today's agenda. I asked if my lab work was such that the shot might be administered in a lesser dose. An inquiry followed and it was determined that I would be given a lesser dose of Neulasta today. After learning that, I fell asleep. When they woke me up, I was the last patient in the infusion lab and it was time to get the shot and remove the needle from the port. I was instructed on what to do the remainder of the night. Take various meds, eat only crackers, etc. And I was instructed to return for the Vitamic C infusion at 9:15 am
I am home, feeling ok. I have had some crackers which successfully stayed down. I drank some tea, and will have some ginger beer, too.
So...I am watching a series about the National Park system...relazing...hoping I will be on the other side of this hiccup tomorrow. I have not experienced the act of vomiting in a long, long while. It did bring about relief. I will restrain from saying more. I am in the throws of life with cancer...cancer that is going to be eliminated...but the process is fluid. It shifts. I remain grateful for what is going well...and give thanks for the help I received from Ed today which means I got through the hiccup.
I hope the morning will have me feeling much better and ready to get the Vitamin C infusion which generally helps me to feel better and endure the chemo with greater stamina.
Tuesday, March 19, 2013
...midpoint treatment day arrives!
I take note of a slight attitude switch I've contended with during the past few days. While one might find it obstinate I see it more as impatience manifesting. I refer to learning the cancer treatment is working last week. Ovarian cancer markers down in the normal range...led me to think "I'm not certain I need to do a lot more chemo"...and that led me to not be as eager to go this morning. And it's not that I would seriously ditch out in the middle of treatment, but it means...an element of the still not mastered impatient part of me came to the table.
This morning I was seemingly more prepared to attend treatment than I had been the other times. Ed drove me through the slushy, icy streets...because, yeah, we got a couple of inches of snow over the evening, yet another topic that triggers that impatient part of me. Wanting to jump ahead in time...
This treatment went different than the others. I got my favorite spot in the infusion room, the one that I had sat at the first infusion. It is in the far left corner of the room and has more space than the other stations. It was a gloomy morning. I had prepped the port site with the Lydocaine cream and the nurse who came out to get me is one with whom I have established a good rapport and somewhat of a bond. She did a great job of inserting the needle, no pain. Just a sensation that is indescribable. Seriously. I have given thought to how I might describe such a feeling such that someone who had not had such an experience would be able to feel it. I'll give a try when I think I can. For now I can say that on a few occasions, after getting my port accessed, I have thought about the alien abduction stories I have read. I feel intruded upon and messed within with toxic chemicals aimed to seek and destroy fast growing cells. Wow. Stop and consider that in a sci-fi vein. Blows my mind a tad each time it happens. I am one of the chosen ones. eek.
After I was infused with morning with the Benadryl and steroid mix, I got really sleepy. By the time the next bag of anti nausea solution began going in through my juggler vein (where the port tube connects into my vascular system) I simply could not continue trying to type this blog as had been my intent. I put on the cloth eye shades and closed my eyes. I was awoken when the chemo drugs began entry. The nurse had to see me awake and watch over me for a period of time to be certain there were no adverse reactions beginning. I could not stay awake but a moment. And so it was. I slept thought 90% of the infusion. It turns out to be a pretty good way of getting through one. And I had entered with an overall lack of restful sleep.
The gist is more positive to report. I have now made it through three chemo treatments. I know the chemo is working. I know how to manage the after effects. I know the Neulasta shot tomorrow will leave me with some pain to contend with and I have a few ideas of what I will try this time to alleviate as much of that aching joint and bone pain as I can. At the very least, once this week is over and I get next week's vitamin c infusion, I will be over the half-way point on the treatment regiment I began. And as I stated in my last post, there is a decent probability that I will not be asked to complete all six treatments. So, I may be well past the half-way point! I am so very grateful that this has been going as well for me as it has. I have many reasons I can point to on why I think it is. Nurturing, loving, tender kindness is part of my reality these days and the beauty of these cannot be overvalued. I believe they are very instrumental in my positive attitude and in the way I have tackled the cancer chapter, from the day I learned of it to the present. I also found the right cast of treatment characters that are highly competent. I get great compassionate care here in Syracuse. When I think I am sick of the weather, I remind myself that I am right where I am supposed to be and then begin to enumerate the reasons to myself to give that notion a sense of concreteness.
As I tire and get geared to go to bed and remember not to turn wrong of hurt the access array that is patched over and then taped aside on my port. When I am having two infusions in a row, it is suggested to leave the needle/access in and not have to re-poke. When I stop and think about how dang surreal this all feels...the notion of alien invasions and their prodding...the port...the odd method we have of removing cancer by filling the body, the temple, with toxic substances that kill all fast growing cells indiscriminately...the drugs that accompany to prevent side effect...and that list alone could become difficult to deal with accept for the fact I just had to accept the package as the ticket.
Accepting the package as the ticket is a notion to contemplate for anyone...I think I just hit upon a topic to end with as I tire. Maybe that's why it is written as it is, but at this moment I find it provocative. Good night from at least the half-way point!
This morning I was seemingly more prepared to attend treatment than I had been the other times. Ed drove me through the slushy, icy streets...because, yeah, we got a couple of inches of snow over the evening, yet another topic that triggers that impatient part of me. Wanting to jump ahead in time...
This treatment went different than the others. I got my favorite spot in the infusion room, the one that I had sat at the first infusion. It is in the far left corner of the room and has more space than the other stations. It was a gloomy morning. I had prepped the port site with the Lydocaine cream and the nurse who came out to get me is one with whom I have established a good rapport and somewhat of a bond. She did a great job of inserting the needle, no pain. Just a sensation that is indescribable. Seriously. I have given thought to how I might describe such a feeling such that someone who had not had such an experience would be able to feel it. I'll give a try when I think I can. For now I can say that on a few occasions, after getting my port accessed, I have thought about the alien abduction stories I have read. I feel intruded upon and messed within with toxic chemicals aimed to seek and destroy fast growing cells. Wow. Stop and consider that in a sci-fi vein. Blows my mind a tad each time it happens. I am one of the chosen ones. eek.
After I was infused with morning with the Benadryl and steroid mix, I got really sleepy. By the time the next bag of anti nausea solution began going in through my juggler vein (where the port tube connects into my vascular system) I simply could not continue trying to type this blog as had been my intent. I put on the cloth eye shades and closed my eyes. I was awoken when the chemo drugs began entry. The nurse had to see me awake and watch over me for a period of time to be certain there were no adverse reactions beginning. I could not stay awake but a moment. And so it was. I slept thought 90% of the infusion. It turns out to be a pretty good way of getting through one. And I had entered with an overall lack of restful sleep.
The gist is more positive to report. I have now made it through three chemo treatments. I know the chemo is working. I know how to manage the after effects. I know the Neulasta shot tomorrow will leave me with some pain to contend with and I have a few ideas of what I will try this time to alleviate as much of that aching joint and bone pain as I can. At the very least, once this week is over and I get next week's vitamin c infusion, I will be over the half-way point on the treatment regiment I began. And as I stated in my last post, there is a decent probability that I will not be asked to complete all six treatments. So, I may be well past the half-way point! I am so very grateful that this has been going as well for me as it has. I have many reasons I can point to on why I think it is. Nurturing, loving, tender kindness is part of my reality these days and the beauty of these cannot be overvalued. I believe they are very instrumental in my positive attitude and in the way I have tackled the cancer chapter, from the day I learned of it to the present. I also found the right cast of treatment characters that are highly competent. I get great compassionate care here in Syracuse. When I think I am sick of the weather, I remind myself that I am right where I am supposed to be and then begin to enumerate the reasons to myself to give that notion a sense of concreteness.
As I tire and get geared to go to bed and remember not to turn wrong of hurt the access array that is patched over and then taped aside on my port. When I am having two infusions in a row, it is suggested to leave the needle/access in and not have to re-poke. When I stop and think about how dang surreal this all feels...the notion of alien invasions and their prodding...the port...the odd method we have of removing cancer by filling the body, the temple, with toxic substances that kill all fast growing cells indiscriminately...the drugs that accompany to prevent side effect...and that list alone could become difficult to deal with accept for the fact I just had to accept the package as the ticket.
Accepting the package as the ticket is a notion to contemplate for anyone...I think I just hit upon a topic to end with as I tire. Maybe that's why it is written as it is, but at this moment I find it provocative. Good night from at least the half-way point!
Friday, March 15, 2013
Riding the Tide...
I'm admittedly riding the tide of comfort that came from the knowledge the chemo is working. Without speaking to any doctors, I do not know whether or not there is a real possibility of cutting the number of chemo infusions short. It seems likely. I believe I would be continuing with the high-dose Vitamin C. Uncertainties are what life is made of...the bottom line is: ovarian cancer no longer residing within is the goal of the chemotherapy regiment. The probabilities of that goal being bet have become great with the CA 125 level in the normal range after two treatments. The goal of the Vitamin C infusions is for my body to get through chemotherapy as unscathed from it as possible. So far, so good on that, too.
With the good news as my backdrop of daily life today, I simply felt more relaxed. As I drove to my counselor's office, I could not frame up any problems. I realize I'm on a path and there are many unknowns. I am doing what I can to change all identified concerns and must push past worry for those for which I can see no solution at this time. I addressed some of my struggles in conversation with Carol and we chuckled quite a bit together today. Laughter or tears? Each have a role in life. Each can be viewed as healthy responses at a given moment, and each allow relief. I must say, I love to laugh and most of my days have at least a spot or two of laughter, particularly when I interact with others.
Ah yes. I have written in previous blogs about how during this particular chapter, I have found myself strongly craving face-to-face interaction. I have relished the visits of friends. I have found comfort in telephone and skype conversations, too. Tomorrow I look forward to both a visit and a couple of conversations. Becky and I have not seen each other in a long while and she is coming over to visit! And the woman who I enjoyed interacting with at the Cancer Society "Look Good...Feel Better" workshop reached out to ask if we might come up with a social meet-up time. We shall speak about that tomorrow. I'll talk with Ed who will be returning from NYC before Sunday's sunrise! On Monday, I will meet, in person, the cancer mentor assigned to me. She is a survivor of a gynecological cancer and has been cancer free ten years! I also have some errands to accomplish in the same vicinity as she and I will be meeting for tea. And before I know it, it will be Tuesday morning and I will be going to get my third infusion.
As I think ahead to what that means, physically, I think about my port. How can I possibly discuss it in a way that it can be understood by someone who has not seen nor had one? It is a plastic netted, circular, bulbous device that was surgically implanted beneath a flap of flesh and skin above my right breast. The wound subsequently healed and the unit really cannot be seen, although there is a definite puffiness that protrudes above the normal line of my body in that area. And if one knows to look, one can see the tube, straw-like as it is, that goes from the port site to the jugular vein. The port accepts a short, stubby needle that is attached to plastic line that connects to a line draping down from a bag of whatever substance is being infused. When the needle is inserted, generally with a fast thrust, it can hurt quite a bit...or not. I have experienced it both ways. There appears to be some correlation between whether or not I have remembered to use the numbing cream, Lydocaine. The two times I have forgotten to apply the cream and cover the area with a small piece of plastic wrap, I have been sprayed with a numbing something-caine, and it has not quite worked as well as the Lydocaine that sits on the skin above the port site for about an hour prior to the needle insertion. There is also variance in the amount of discomfort I experience post infusion. The port felt "used up" after getting the ~ 6 hour chemo infusion series and then returning the next day for a 3 hour Vitamin C infusion. Currently, there is a bruise on the area and it remains a bit tight and sore two days after Wednesday's Vitamin C infusion.
Do I consider it a big deal? Not so much. It is a part of the path...the path leading to balance in my to-be cancer-free body. Although my sincere hope is for no one reading my blog to ever have ovarian or any other kind of cancer, the probabilities may not favor such a wish. There is a great chance someone reading this will at least know someone else who will encounter such a diagnosis. My wish is that what is read here will shed insight into what might be encountered or what should be sought out. I reveal my emotions, my concerns, my treatment milieu, my physical sensations and challenges and my everyday life stuff in writing this blog. Sometimes I struggle...and sometimes I am successful in being in the moment, largely grateful for life itself. Coming from a place of gratitude, life is richer, anyhow.
I'm tired. I have watched a couple of Big East Conference basketball games and it is bedtime.
With the good news as my backdrop of daily life today, I simply felt more relaxed. As I drove to my counselor's office, I could not frame up any problems. I realize I'm on a path and there are many unknowns. I am doing what I can to change all identified concerns and must push past worry for those for which I can see no solution at this time. I addressed some of my struggles in conversation with Carol and we chuckled quite a bit together today. Laughter or tears? Each have a role in life. Each can be viewed as healthy responses at a given moment, and each allow relief. I must say, I love to laugh and most of my days have at least a spot or two of laughter, particularly when I interact with others.
Ah yes. I have written in previous blogs about how during this particular chapter, I have found myself strongly craving face-to-face interaction. I have relished the visits of friends. I have found comfort in telephone and skype conversations, too. Tomorrow I look forward to both a visit and a couple of conversations. Becky and I have not seen each other in a long while and she is coming over to visit! And the woman who I enjoyed interacting with at the Cancer Society "Look Good...Feel Better" workshop reached out to ask if we might come up with a social meet-up time. We shall speak about that tomorrow. I'll talk with Ed who will be returning from NYC before Sunday's sunrise! On Monday, I will meet, in person, the cancer mentor assigned to me. She is a survivor of a gynecological cancer and has been cancer free ten years! I also have some errands to accomplish in the same vicinity as she and I will be meeting for tea. And before I know it, it will be Tuesday morning and I will be going to get my third infusion.
As I think ahead to what that means, physically, I think about my port. How can I possibly discuss it in a way that it can be understood by someone who has not seen nor had one? It is a plastic netted, circular, bulbous device that was surgically implanted beneath a flap of flesh and skin above my right breast. The wound subsequently healed and the unit really cannot be seen, although there is a definite puffiness that protrudes above the normal line of my body in that area. And if one knows to look, one can see the tube, straw-like as it is, that goes from the port site to the jugular vein. The port accepts a short, stubby needle that is attached to plastic line that connects to a line draping down from a bag of whatever substance is being infused. When the needle is inserted, generally with a fast thrust, it can hurt quite a bit...or not. I have experienced it both ways. There appears to be some correlation between whether or not I have remembered to use the numbing cream, Lydocaine. The two times I have forgotten to apply the cream and cover the area with a small piece of plastic wrap, I have been sprayed with a numbing something-caine, and it has not quite worked as well as the Lydocaine that sits on the skin above the port site for about an hour prior to the needle insertion. There is also variance in the amount of discomfort I experience post infusion. The port felt "used up" after getting the ~ 6 hour chemo infusion series and then returning the next day for a 3 hour Vitamin C infusion. Currently, there is a bruise on the area and it remains a bit tight and sore two days after Wednesday's Vitamin C infusion.
Do I consider it a big deal? Not so much. It is a part of the path...the path leading to balance in my to-be cancer-free body. Although my sincere hope is for no one reading my blog to ever have ovarian or any other kind of cancer, the probabilities may not favor such a wish. There is a great chance someone reading this will at least know someone else who will encounter such a diagnosis. My wish is that what is read here will shed insight into what might be encountered or what should be sought out. I reveal my emotions, my concerns, my treatment milieu, my physical sensations and challenges and my everyday life stuff in writing this blog. Sometimes I struggle...and sometimes I am successful in being in the moment, largely grateful for life itself. Coming from a place of gratitude, life is richer, anyhow.
I'm tired. I have watched a couple of Big East Conference basketball games and it is bedtime.
Thursday, March 14, 2013
Humbly Grateful
This morning, for the second morning in a row, my email inbox had notice of a donation to my cancer fund. I have not been willing to broadcast the fact I am in need in this way, and reluctantly allowed a couple of friends to research and develop a means to collect financial help. Those close to me with whom I talk know that I am unemployed, cannot even accept a new job right now due to treatment, and that I am rapidly depleting all resources available. It is a rare time in my life when I have zero income. The medical bills have started to arrive and because of the insurance policies, I know that I can anticipate ~$10,000 my share of costs. The weekly Vitamin C infusions require full payment on the spot. This is my disclosure on this very, very touchy & would-be private matter. Any and all funds that those reading my blog contribute will transfer from Paypal to my bank account and will then be used to immediately pay the medical bills. The news of a donation has "made my day" and had lingering positive impact each time it has occurred. I graciously hope that each donor takes pride in helping me through this difficult time and realizes that I am heart-on-sleeve touched by the generosity. Each person who has contributed should also note: you invested wisely....because...if you did not read yesterday's post: my CA 125 level is now in the normal range! The chemo is working! The Cancer Antigen for Ovarian Cancer has diminished...from the high of 583 in November 2012, when I first learned I was hosting ovarian cancer (why give bold capital letters to something of diminishing significance?!). After the surgery, when all visible tumors were successfully removed, the number was 123. After the first round of chemo, the number was 90. And yesterday, after the second round of chemo, the number is 7.9! That number is in the normal range. That dynamite news brings me great joy. My intention to survive stage four ovarian cancer is looking mighty doable. Phew. And Hallelujah!
So what did I do today? The day after learning such grand news? I had a long conversation with a friend in Humboldt who phoned me this morning; our last talk had been in December. I relaxed through the remainder of the day. I left my nightgown on and put my red robe over it. I wore a knitted cap. I ate healthily. I read. I allowed myself to rest because I know I have been overdoing it and have felt fatigued and worse. I am gearing up for the third round of chemo next Tuesday and I want to go into it rested, hydrated and mentally prepared knowing it is at the least the midway point of the treatment milieu established by the oncologist. I am hopeful that after the PET scan scheduled for April 16, we may rethink the treatment schedule and forego at least the sixth or last round of the very strong chemo combo I am infused with. If there are no signs of tumors via PET scan and the markers, such as the CA 125 are all within normal range, I reckon there is a possibility of cutting the chemo short for success. That is how I am thinking, although I have not had such a conversation with the oncologist. To be revealed...or tbr...as I say.
If you are new to reading my blog, please know I welcome comments and questions. I began blogging after the surgery...just as chemo began, but I have an entry here that gives a historical overview. I think it is a useful thing to write about the process of eliminating a potentially deadly disease from one's body. Since writing is therapeutic and I have enjoyed doing so since I was a kid, this is a way I can document my story, keep those interested abreast of what it is like, how I feel, the ups and downs, my progress, etc., while giving myself a self-help outlet. Uh oh...please let me know if those words just compelled you to opt away! Seriously, please reach out to me and let me know you are there. My friendships are of paramount importance.
So what did I do today? The day after learning such grand news? I had a long conversation with a friend in Humboldt who phoned me this morning; our last talk had been in December. I relaxed through the remainder of the day. I left my nightgown on and put my red robe over it. I wore a knitted cap. I ate healthily. I read. I allowed myself to rest because I know I have been overdoing it and have felt fatigued and worse. I am gearing up for the third round of chemo next Tuesday and I want to go into it rested, hydrated and mentally prepared knowing it is at the least the midway point of the treatment milieu established by the oncologist. I am hopeful that after the PET scan scheduled for April 16, we may rethink the treatment schedule and forego at least the sixth or last round of the very strong chemo combo I am infused with. If there are no signs of tumors via PET scan and the markers, such as the CA 125 are all within normal range, I reckon there is a possibility of cutting the chemo short for success. That is how I am thinking, although I have not had such a conversation with the oncologist. To be revealed...or tbr...as I say.
If you are new to reading my blog, please know I welcome comments and questions. I began blogging after the surgery...just as chemo began, but I have an entry here that gives a historical overview. I think it is a useful thing to write about the process of eliminating a potentially deadly disease from one's body. Since writing is therapeutic and I have enjoyed doing so since I was a kid, this is a way I can document my story, keep those interested abreast of what it is like, how I feel, the ups and downs, my progress, etc., while giving myself a self-help outlet. Uh oh...please let me know if those words just compelled you to opt away! Seriously, please reach out to me and let me know you are there. My friendships are of paramount importance.
Habitat
One thing positive about living on this very quiet dead-end road below a once large lightly-trampled forest is the wildlife displaced by the incredulous development which grows new homes nearly weekly has come to live in the splotches of forest in the adjacent vicinity. In this case, today's example, I have been stunned with the beauty of a grand sized raptor with red feathers on the tail that has circled in my eye-shed across the street into the forest my neighbor bought last year.
Wednesday, March 13, 2013
Look good ...feel better... cook food...feel full...living life
Monday had been anticipated - the day I would attend the Cancer Society "Look Good, Feel Better" program. There were six attendees and two guests, myself included, so it was a comfortably-sized group. We each had a bag given us with various make-up items. There was some consistency to the items inside the zippered bags, but as is often the case, mine was mostly different. I have never been a make-up person, but had never had an official teach, either. So, I embraced the opportunity as such, to meet others with cancer and to see if a little make-up would be a good thing. I went itching to have fun, and that part was for sure accomplished.
By the time it was time to look at hair-related topics, I had on foundation, powder, blush, eyeliner, eye shadow, mascara, lip liner and two lipsticks. Geesh! Not only was that a lot, it felt like it too. And I dare add: it looked like a lot. I believe the make-up accentuates every wrinkle forming. So, it was a great teach, and I am not likely to adopt such practices as every day.
I learned a cool trick that involves cutting a small tee shirt and wrapping it around head as a full turban. Gotta find the right solid color tee to try it out with. I learned a good secret tip on the whole scarf thing: use an elastic band to secure it, then tie or braid the remainder! Who knew!? The most exciting part of the whole event, well at least tied as the most exciting, was when the hairdresser who was teaching us went into the wig room specifically looking for a wig for each of us. She came out with one for me...I tried it on...and liked it! Not sure how the time I went in there and tried on so many wigs the person had missed offering it as an option, but this woman picked it immediately. And it was a thumbs up from all at the table. It is kinda sassy...a wee bit wild...and I left with it on. The coolest thing about it is: it is warm! It goes down over the ears, unlike the one I was leaning toward choosing, and in these temps, the warmth it so very welcome. It was on in the wind that night and yesterday and it stayed on! Yay...for hair.
And yay for meeting someone with whom there was mutual connect...Shanna asked for my number and I was going to do the same from her...so there is potentially a friendship coming out of the event, too!
Yesterday I spent much of the day cooking...I made a fresh tomatoe sauce, made meatballs, took a soaking bath with detox salts, took care of some bills and then ran to the store for the salad greens. Ed and I shared the meal and it was delicious. It seems hard to believe the amount of time it takes to do something like cook at Italian meal. Dang.
Today I am getting ready to go to get another Vitamin C infusion. I am looking ahead today, too, for how to get next week's needs met. I know I am going to need help...rides to and fro chemo, someone to be here, in shifts or for a day, to help me out so I can rest as needed. I am trying to ask with a brave face this time, because although it magically came together last time with an unexpected call at the most needed time, I hope to have some arrangements in place this time.
It's hours later and I'm at the infusion center...almost done with the Vit C infusion. I asked for last weeks lab results & got some tremendously affirming news: my CA-125 (ovarian cancer markers) number, which was initially 583 in November, was last 92, is now 7.9....which is the normal range! This suggests the chemo is working...taking the cancer for a last ride into oblivion. I feel very happy, although very worn out. Too much activity too many days in a row. I intend to go home, build a fire, & rest. I feel as though I am fighting a cold.
I want to end this with a note of gratitude. I am obviously hugely grateful to learn that CA-125 no has gone into the normal range after 2 treatments. I am also very grateful to have received another donation to the cancer fund established by my daughter, link on this site. I know it brought me tears of joy this morning to learn of the donation. The monies transfer directly into my bank account and from there to my medical bills. Each dollar matters & eases strain. Thank you kindly for your help.
By the time it was time to look at hair-related topics, I had on foundation, powder, blush, eyeliner, eye shadow, mascara, lip liner and two lipsticks. Geesh! Not only was that a lot, it felt like it too. And I dare add: it looked like a lot. I believe the make-up accentuates every wrinkle forming. So, it was a great teach, and I am not likely to adopt such practices as every day.
I learned a cool trick that involves cutting a small tee shirt and wrapping it around head as a full turban. Gotta find the right solid color tee to try it out with. I learned a good secret tip on the whole scarf thing: use an elastic band to secure it, then tie or braid the remainder! Who knew!? The most exciting part of the whole event, well at least tied as the most exciting, was when the hairdresser who was teaching us went into the wig room specifically looking for a wig for each of us. She came out with one for me...I tried it on...and liked it! Not sure how the time I went in there and tried on so many wigs the person had missed offering it as an option, but this woman picked it immediately. And it was a thumbs up from all at the table. It is kinda sassy...a wee bit wild...and I left with it on. The coolest thing about it is: it is warm! It goes down over the ears, unlike the one I was leaning toward choosing, and in these temps, the warmth it so very welcome. It was on in the wind that night and yesterday and it stayed on! Yay...for hair.
And yay for meeting someone with whom there was mutual connect...Shanna asked for my number and I was going to do the same from her...so there is potentially a friendship coming out of the event, too!
Yesterday I spent much of the day cooking...I made a fresh tomatoe sauce, made meatballs, took a soaking bath with detox salts, took care of some bills and then ran to the store for the salad greens. Ed and I shared the meal and it was delicious. It seems hard to believe the amount of time it takes to do something like cook at Italian meal. Dang.
Today I am getting ready to go to get another Vitamin C infusion. I am looking ahead today, too, for how to get next week's needs met. I know I am going to need help...rides to and fro chemo, someone to be here, in shifts or for a day, to help me out so I can rest as needed. I am trying to ask with a brave face this time, because although it magically came together last time with an unexpected call at the most needed time, I hope to have some arrangements in place this time.
It's hours later and I'm at the infusion center...almost done with the Vit C infusion. I asked for last weeks lab results & got some tremendously affirming news: my CA-125 (ovarian cancer markers) number, which was initially 583 in November, was last 92, is now 7.9....which is the normal range! This suggests the chemo is working...taking the cancer for a last ride into oblivion. I feel very happy, although very worn out. Too much activity too many days in a row. I intend to go home, build a fire, & rest. I feel as though I am fighting a cold.
I want to end this with a note of gratitude. I am obviously hugely grateful to learn that CA-125 no has gone into the normal range after 2 treatments. I am also very grateful to have received another donation to the cancer fund established by my daughter, link on this site. I know it brought me tears of joy this morning to learn of the donation. The monies transfer directly into my bank account and from there to my medical bills. Each dollar matters & eases strain. Thank you kindly for your help.
Sunday, March 10, 2013
...full days
It's been a couple of days...and they were very full, indeed! Friday I was asked on a date to the Everson Museum where "American Moderns, from O'Keefe to Rockwell" is on display. I had seen a few Georgia O'Keefe paintings in Seattle many years ago when I was there to attend the PSA Conference (funny how one idea triggers the next and I realize there are so many unwritten jewels about going to the PSA - Pacific Sociological Association). I recall standing there with Thia and being brought to tears just looking at the incredible painting Georgia had done so many years before. Powerful stuff. So, yeah, I was eager to go to see the display. And we walked around and saw each of the works on display. There was one Rockwell and four O'Keefe's and many, many others. I spent a lot of time studying the O'Keefe's...and they were fascinating, rich, warm, inviting, masterfully accomplished. We spent a total of three and a half hours in the museum, viewing every work on display - at least rudimentarily. My knees were aching when we left and it had been a great date, for sure. That evening was lovely...heated up leftovers and an organic salad with many ingredients...and love. Ah.
Saturday was a slow rollin day. Late to rise, late breakfast...I watched part of the SU loss to Georgetown game and then it was time to open the box and bring music back into my home-world.I had made a facebook post about my stereo amp issue, hoping someone would know something or would have something to offer on the topic. I am lost without music as a possibility in the backdrop. That is not to say that I do not have the keen ability to draw a tune up in the mind's gleeful eye, for lyrics and tunes come up all the time for me. But...there is something powerfully important to be said for being able to play that awesome collection of cd's on that carousel that sits waiting...and my very old Pioneer SA-1050 had died. Well...it was almost dead and not useable. My son had opened it up and did some cleaning some months back, and more recently, Ed had opened it up and used a potent cleaner and during the past three weeks, it had worked again! That is, it had been able to output on both channels. Then - the crackling, and no more sound on one side. And then...no more sound to both. Argh.
Well that post on facebook led to Dawn taking an active problem-solving approach. She went hunting on ebay and found the same unit. She wrote a note about it and I responded that the person did not warranty the unit. That was the last I heard about that...except for a clue about waiting. Long story, short, she spoke with the seller and ordered it for me. Talk about generous and wonderful. She knows how I love music and the challenging chapter I am in. She knows and she cares and she took action. The question of why one person will take that leap to be generous is now on my mind. I am contemplating it. I know that she is not in some huge surplus situation in her life. But yet, she chose to help me now. Not at a time one would be prone to expect a gift...like a birthday. She was not calling it a gift for a particular occasion. She just knew it would make me happy and would eliminate a stressor, and she took action. Given she also donated money toward my cancer treatment, I am left hugely grateful and full of love...and as I said, contemplation. What makes a person feel and enact generosity? the unspoken question attached to that one is: while another person, perhaps in better financial standing to do so, choses not to be generous. I will continue to give this thought. I know that there were times when someone was in need and I myself was not in a position to help and I felt kinda bad but let it go. Another time, someone was in need and I was in worse financial shape than the time before, but I came forward and gave something. I remember I felt really good about it afterwards. Like I had made a small sacrifice that would lead to someone I cared for having some of her needs met a little bit more. Lately, as I struggle through this cancer treatment phase on more than one level, I have thought more about generosity of monies. I've chosen to take on Vitamin C therapy as an augmentation to chemo. When I made the commitment, it was just that. It would not be good to have the treatments intermittently. It is important to keep the levels of C up. So, I said yes to $200/week for months at a time when I have zero income. Zero is a very lonely and frightening number at this time in my life. No doubt. I have awoken in the night and sat straight up concerned about how I am going to get through this time financially. Worried. At the end of these times of worry, I have to reassure myself that I am worth it, that I made the right choice, that no matter what, I will get through it, given I have a credit card. I fear what this chapter will do to my future plans...but then I boil it down to the simple truth. I have no concerns other than right now...because if I do not successfully get cancer out of my body, there will be no future. And so it is. Each week, somehow, I go in there and hand them the $200 that gets me an infusion that helps my immune system to function. And the proof can be seen in my healing thumb...ever better every day.
The preceding paragraph shows what freestyle writing creates. A notion then another...just as the mind works. I work to make the finance topic quit coming up...quit waking me up from a seemingly sound sleep...and to be evermore disciplined. Thing is: I am a disciplined person with money. That makes this chapter extra difficult. But...that said, I have 5 people who have responded to my ad about my too-large-for-me clothing for sale. I see the potentiality for these people to pay for another infusion...and that thought is a relief. It is all about getting through this period of time, being mindful, self-loving, accepting of what is, gracious for what I receive from others and grateful for all there is to be grateful for.
Which brings this full-circle to the stereo amp Dawn sent. Ed hooked it all up for me. And it was not easy. That's because the graphic equalizer had been disconnected at some point by someone else...a different tv had come into the household...and nothing about hooking it all up was simple. I pulled out the booklets for the old equipment and with perseverance and toil, it is fully hooked up as it had been one day long ago in CA. The sound can be tailored with the graphic equalizer when listening to cd's and the radio and when playing DVD's on the tv, the sound can go through the large speakers!!! I am thrilled over this! I am ever-so-grateful to Dawn for sending me the exact amp to replace the old and fully worn one and for Ed who got the system all hooked up correctly. Three cheers and more!
Back to yesterday and how it relates to today in this body working toward harmony...after the stereo was working we decided to take a walk with WileE and Trooper, our dogs. We walked for about an hour and a half and I was struggling to make it back. I was hurting and felt like I might not make it...but pushed on, trying to catch up with my short legs, growing ever tired. Once home, hunger begged for food and I cooked...even though I received a massage, the pain was undeniable and by the time Ed went home, I was tucked into my room. I only got up to take an ibuprofen and anyone who knows me knows I rarely take any pharma's. It did little good but I was hurting enough to try.
I am writing from bed..still needing to get up and care for myself. I slept pretty well. Got up and went back to sleep twice. But my knees remain swollen and hurting and I find it difficult to move. I feel like crying. I was so happy to be walking again. I walked a lot this week. And now, it seems, it was too much to have done so. I simply need to learn how to find the balance in all aspects of my current life. How to keep my body exercised enough without going too far, how to continue to provide my vitamin c infusions to give my body the best chance to get though this chapter in the best condition possible, how to continue to buy myself fresh organic vegetables, how to bring in money out of what I have.
Maybe if I keep the tunes playing in the background, with my working, wonderful stereo...and remember to sing and be glad for what is going well...I can push past the pain, eliminate the concerns and become that person that is evolving to be the new me...
Saturday was a slow rollin day. Late to rise, late breakfast...I watched part of the SU loss to Georgetown game and then it was time to open the box and bring music back into my home-world.I had made a facebook post about my stereo amp issue, hoping someone would know something or would have something to offer on the topic. I am lost without music as a possibility in the backdrop. That is not to say that I do not have the keen ability to draw a tune up in the mind's gleeful eye, for lyrics and tunes come up all the time for me. But...there is something powerfully important to be said for being able to play that awesome collection of cd's on that carousel that sits waiting...and my very old Pioneer SA-1050 had died. Well...it was almost dead and not useable. My son had opened it up and did some cleaning some months back, and more recently, Ed had opened it up and used a potent cleaner and during the past three weeks, it had worked again! That is, it had been able to output on both channels. Then - the crackling, and no more sound on one side. And then...no more sound to both. Argh.
Well that post on facebook led to Dawn taking an active problem-solving approach. She went hunting on ebay and found the same unit. She wrote a note about it and I responded that the person did not warranty the unit. That was the last I heard about that...except for a clue about waiting. Long story, short, she spoke with the seller and ordered it for me. Talk about generous and wonderful. She knows how I love music and the challenging chapter I am in. She knows and she cares and she took action. The question of why one person will take that leap to be generous is now on my mind. I am contemplating it. I know that she is not in some huge surplus situation in her life. But yet, she chose to help me now. Not at a time one would be prone to expect a gift...like a birthday. She was not calling it a gift for a particular occasion. She just knew it would make me happy and would eliminate a stressor, and she took action. Given she also donated money toward my cancer treatment, I am left hugely grateful and full of love...and as I said, contemplation. What makes a person feel and enact generosity? the unspoken question attached to that one is: while another person, perhaps in better financial standing to do so, choses not to be generous. I will continue to give this thought. I know that there were times when someone was in need and I myself was not in a position to help and I felt kinda bad but let it go. Another time, someone was in need and I was in worse financial shape than the time before, but I came forward and gave something. I remember I felt really good about it afterwards. Like I had made a small sacrifice that would lead to someone I cared for having some of her needs met a little bit more. Lately, as I struggle through this cancer treatment phase on more than one level, I have thought more about generosity of monies. I've chosen to take on Vitamin C therapy as an augmentation to chemo. When I made the commitment, it was just that. It would not be good to have the treatments intermittently. It is important to keep the levels of C up. So, I said yes to $200/week for months at a time when I have zero income. Zero is a very lonely and frightening number at this time in my life. No doubt. I have awoken in the night and sat straight up concerned about how I am going to get through this time financially. Worried. At the end of these times of worry, I have to reassure myself that I am worth it, that I made the right choice, that no matter what, I will get through it, given I have a credit card. I fear what this chapter will do to my future plans...but then I boil it down to the simple truth. I have no concerns other than right now...because if I do not successfully get cancer out of my body, there will be no future. And so it is. Each week, somehow, I go in there and hand them the $200 that gets me an infusion that helps my immune system to function. And the proof can be seen in my healing thumb...ever better every day.
The preceding paragraph shows what freestyle writing creates. A notion then another...just as the mind works. I work to make the finance topic quit coming up...quit waking me up from a seemingly sound sleep...and to be evermore disciplined. Thing is: I am a disciplined person with money. That makes this chapter extra difficult. But...that said, I have 5 people who have responded to my ad about my too-large-for-me clothing for sale. I see the potentiality for these people to pay for another infusion...and that thought is a relief. It is all about getting through this period of time, being mindful, self-loving, accepting of what is, gracious for what I receive from others and grateful for all there is to be grateful for.
Which brings this full-circle to the stereo amp Dawn sent. Ed hooked it all up for me. And it was not easy. That's because the graphic equalizer had been disconnected at some point by someone else...a different tv had come into the household...and nothing about hooking it all up was simple. I pulled out the booklets for the old equipment and with perseverance and toil, it is fully hooked up as it had been one day long ago in CA. The sound can be tailored with the graphic equalizer when listening to cd's and the radio and when playing DVD's on the tv, the sound can go through the large speakers!!! I am thrilled over this! I am ever-so-grateful to Dawn for sending me the exact amp to replace the old and fully worn one and for Ed who got the system all hooked up correctly. Three cheers and more!
Back to yesterday and how it relates to today in this body working toward harmony...after the stereo was working we decided to take a walk with WileE and Trooper, our dogs. We walked for about an hour and a half and I was struggling to make it back. I was hurting and felt like I might not make it...but pushed on, trying to catch up with my short legs, growing ever tired. Once home, hunger begged for food and I cooked...even though I received a massage, the pain was undeniable and by the time Ed went home, I was tucked into my room. I only got up to take an ibuprofen and anyone who knows me knows I rarely take any pharma's. It did little good but I was hurting enough to try.
I am writing from bed..still needing to get up and care for myself. I slept pretty well. Got up and went back to sleep twice. But my knees remain swollen and hurting and I find it difficult to move. I feel like crying. I was so happy to be walking again. I walked a lot this week. And now, it seems, it was too much to have done so. I simply need to learn how to find the balance in all aspects of my current life. How to keep my body exercised enough without going too far, how to continue to provide my vitamin c infusions to give my body the best chance to get though this chapter in the best condition possible, how to continue to buy myself fresh organic vegetables, how to bring in money out of what I have.
Maybe if I keep the tunes playing in the background, with my working, wonderful stereo...and remember to sing and be glad for what is going well...I can push past the pain, eliminate the concerns and become that person that is evolving to be the new me...
Thursday, March 7, 2013
Learning about blogging
My daughter initially set this blog site up for me...I've enjoyed writing since way-back...and this chapter is so very significant, it begs to be recorded. With that said, I have no experience with blog sites. This morning, I noticed three previous posts were untitled. I decided to title the for overall consistency and that put them into draft form. When I noticed that and hit publish, they gained top of the posts status and got redacted. That's too bad. I like order. I have had jobs of editing for publication & the nuisance of reordering when editing that occurred cannot be a huge deal, but is relegated to minor irritation and sake-of-humility categories.
This post was created to explain that the next three posts are previous posts now way out of order. Shucks....
This post was created to explain that the next three posts are previous posts now way out of order. Shucks....
...Ovarian Cancer is revealed, removed...regrew and is heading to remission
Here I am reaching out, writing about a time in my life like no other. Just last week the following was applicable: If you're reading this you are a member of My Cancer Circle. That fact means a lot to me. I'm in my best possible mindset at any given moment...and they do vary. Here's a brief history of where I am at and how I got here...
On November 9, 2012, I learned that my right abdominal pains were likely ovarian cancer while waiting for an appendectomy. Glad I didn't give up the appendix before learning the truth...because I rather like keeping as many of my organs as are healthy and functional!
CT scans and Xrays confirmed multiple tumors of significant size. I went to Memorial Sloan Kettering Cancer Center in Manhattan and had the good fortune of being randomly assigned to an ovarian cancer specialist who told me that I already had the best surgeon possible treating me. She believed this to be so because gynecology oncology expert Dr. Cunningham, in Syracuse, had been her mentor. The consult was a relief and affirming, inspirational and no-nonsense. It enabled me to schedule and subsequently undergo"debulking" surgery on December 19, 2012.
It was a big surgery and it went as well as all had prayed. Dr. Cunningham was very pleased to report that she was able to leave my spleen and able to remove the tumor on the dome of my liver along with the many other cancerous tumors in the peritoneal area, and ovaries. I spent 5 days in Crouse Hospital and returned home on Christmas Eve evening.
The staples came out on January 3, 2013; after going to the ER where my mom had been sent with pneumonia (from which she has recovered), I went and had the thirty something staples out of my abdomen...and that was a great relief. A conference with Dr. Cunningham the following week revealed her beliefs that after chemo I should be in remission. She told me that ovarian cancer responds well to Paclitaxel & Carboplatin.
Recent CT and PET scans show the cancer is forming new tumors...so the time to attack has come...and I am ready! The battle may leave me fatigued, sore, cranky and pushed at times, and unable to fully meet my own needs.
I have always realized myself as truly blessed to make strong and lasting connections with wonderful, kind and loving people. I know that I am in a very challenging chapter I must go through and I will need help. A dear friend established this site as a place I can use the help calendar to note my appointments and needs, thereby allowing those who wish to help out a way to see a need and sign on to help as is possible.
I write this the evening before I begin chemotherapy. I hope to hear from those who wish to keep in touch. Call! If I cannot take the call, I will return it when possible. I will update my status as announcements here as time goes on. Thank you for caring. ♥
-----------------------------------------------------------------------------
Since writing this last week, I have come to a preferred way of seeing life with cancer. Rather than get into an adversarial battle with it, I view it as a part of a non-harmonious body. Cancer has become a part of my body, although I am now on a course that will create harmony again. And to that end I spend effort steering my thoughts in a course consistent with restoring or recreating harmony.
I had been quite put off by the thought of getting a foreign object, a port, installed in my body for future uses. The day of the surgery three of the three nurses I spoke with told me that I got the best surgeon, Dr. Murphy. He definitely took time to explain answers to my questions until I conveyed satisfaction with his replies. He showed Hannah, Jannette and I the kit he would be placing and assured me he had done so many as to know what he is doing.
I recall singing, speaking and at one point he asked me not to talk during the time he inserted the port. He suggested we celebrate the ports' removal one day and I intend to schedule him to take it out, no doubt as meticulously as he had placed it.
There are many things to look forward to and many moments to get through. The first day of chemo was one full of amazing signs. And lesson realizations. On February 5, I awoke and it was a sunny day here in B'ville. Goodness inspiring! The Rascals' song "It's a Beautiful Morning" blazed into my mind and a fast YouTube search later I listened to a couple of difference versions. Hannah and I drove together. I felt hugely comforted to be accompanied by my daughter, Hannah, who at this point had given nearly two months of time to helping me.
On ChemoOne day, she was strong and firm and correct. After entering the infusion room and being asked by the nurse to chose a site to sit, I felt overwhelmed. I sat between two chairs on the right side of the room and began to feel fear. I began to cry. Hannah looked around the room and asked me if I thought I might feel better on the other side of the room in a large corner with a plant. I said maybe and she then asked the nurse if we could move over there before we got started. The nurse said yes and my entire experience was altered after sitting in the new site. Soon thereafter, after relaxing, I spotted a man outside looking up into the sky. Hannah got up and looked out the window commenting about a bald eagle. I got up. Sure enough...to my amazement....a bald eagle whose head feathers were illuminated by the morning sun, was circling in the southern sky with two young eagles nearby. What an amazing gift. I felt blessed.
The entire chemo infusion process went well. I slept some, talked to Hannah some...got through it without incident. And I gave thanks on the way home. My nurse had instilled a high degree of seriousness about letting nausea roll down a track like a train one might have to try to jump on while it chugged ahead...no thank you...not gonna let nausea happen. Period. And so it was, an agreement was forged between me and the meds I was prescribed. And a bond was forged with my port. I felt it an integrated member of my treatment plan, my plan to gain harmony in body, spirit, mind, emotions. When I felt it serve such a major role in my path, without any pain, I gained love and respect for the port. And that is the way of this road to harmonious health...without fear, with gratitude, with love and respect.
New Year of the Snake
Gung Hay Fat Choy...positive sentiments as a new year begins...
I'm surprised that I have not written sooner. This chapter of really coming to terms with knowing one's body is not in harmony has been multi-faceted. Surprises don't surprise...it's really a go-with-the-flow way I'm now living.
I'm surprised that I have not written sooner. This chapter of really coming to terms with knowing one's body is not in harmony has been multi-faceted. Surprises don't surprise...it's really a go-with-the-flow way I'm now living.
Vitamin C Infusion 3
I'm laying down, reclined, on a turquoise leather chair under a heated blanket. My port was accessed without pain, blood has been drawn and I have seen Dr. Puc for my follow-up. All things considered, it's going well. The worst of round two of chemo is behind me. I am sipping a warm cup of Tazo Passion tea. I am being infused with 35 grams of Vitamic C as I type. One sure way to see that it is helping me is to look at my constantly healing thumb. The fact it is doing so well while I am undergoing chemo supports the fact vitamin c infusions promote the immune system that would basically be destroyed otherwise.
Yesterday I was out and about in B'ville and Liverpool running errands. In the evening I experienced an emotional eating outbreak. I allowed myself to deviate from my "don't feed cancer" path by eating chocolate. But, today is a new day. I have some fun things in store later...gonna cook some fresh sauce, make a yummy dinner & effort will go into stereo amp cleaning, in an effort to restore it to proper working order. If I were to be asked to give up stereo or tv, it would be such an easy choice. John Prine lyrics come to mind...anyone know which ones?
Yesterday I was out and about in B'ville and Liverpool running errands. In the evening I experienced an emotional eating outbreak. I allowed myself to deviate from my "don't feed cancer" path by eating chocolate. But, today is a new day. I have some fun things in store later...gonna cook some fresh sauce, make a yummy dinner & effort will go into stereo amp cleaning, in an effort to restore it to proper working order. If I were to be asked to give up stereo or tv, it would be such an easy choice. John Prine lyrics come to mind...anyone know which ones?
Tuesday, March 5, 2013
Sunshine, walking, realizations and the hope for a fairy tale ending
After breakfast, I ran a bath. The soaking, jets and herbal detox salts did me very good. I practiced singing some of my favorite songs loudly. I got out feeling refreshed. I made a well-rounded and healthy lunch for Ed and I and we spent some time together. He came intending to get me out walking and was suggesting the mall, but when the sun was out fully and the temp felt reasonable to walk in a down coat with hood and hat...off we went and I am quite pleased that I made the two mile loop for the first time since before my surgery! A grand accomplishment that should put me to bed tired out enough to enjoy some solid rest. Last night only provided 5 hours and I know that is inadequate.
Today I realized that my bald head is a turn off. I am feeling numerous feelings about it. I review all my choices and I stand by them as correct. I simply have to do what I am doing. I am not in love with the path I am on, but I love life. As strong as I can be at moments, I also experience flip-side moments. What I now have for a body is quite different than before this all began. My surgical scar is likely to fade out some, but it is grand in it's zipper effect and lengthy. My hair, which I always enjoyed, will grow back, but yet even those who have stated this to me in a reassuring tone find it difficult. And I have to be strong enough to accept and love myself now, perhaps most of all. And I am having difficulty at the moment rising to that lowly yet lofty occasion.
There are additional aspects of my situation which make it feel on the cruel side. But the bottom line is, if I see no way to change any of the circumstances, why frame it as cruel? If I have had experiences I will always cherish and my cancer and finances force changes ..shouldn't I be able to maintain gratitude for having had the joy? During the autumn, I fell in love. The ways in which it has been beautiful, empowering, tender and rich cannot be enumerated. The blessings are countless. My rock has been love. When things waiver, when doubts are cast or any distancing happens, I feel scared. It becomes work to maintain my will and strength. I am a hopeful hopeless romantic. I want a fairy tale ending.
Today I realized that my bald head is a turn off. I am feeling numerous feelings about it. I review all my choices and I stand by them as correct. I simply have to do what I am doing. I am not in love with the path I am on, but I love life. As strong as I can be at moments, I also experience flip-side moments. What I now have for a body is quite different than before this all began. My surgical scar is likely to fade out some, but it is grand in it's zipper effect and lengthy. My hair, which I always enjoyed, will grow back, but yet even those who have stated this to me in a reassuring tone find it difficult. And I have to be strong enough to accept and love myself now, perhaps most of all. And I am having difficulty at the moment rising to that lowly yet lofty occasion.
There are additional aspects of my situation which make it feel on the cruel side. But the bottom line is, if I see no way to change any of the circumstances, why frame it as cruel? If I have had experiences I will always cherish and my cancer and finances force changes ..shouldn't I be able to maintain gratitude for having had the joy? During the autumn, I fell in love. The ways in which it has been beautiful, empowering, tender and rich cannot be enumerated. The blessings are countless. My rock has been love. When things waiver, when doubts are cast or any distancing happens, I feel scared. It becomes work to maintain my will and strength. I am a hopeful hopeless romantic. I want a fairy tale ending.
Monday, March 4, 2013
Company!
Yesterday I woke up and felt slightly better than the previous day. I immediately thought: I'd better look in the fridge and figure out what needs to be cooked...and discovered the big eggplant I had bought a week before. I sliced it, onion and garlic carefully into strips and sauteed them together. Just as I got the mixture fully cooked and sat down, Trooper barked and I looked out to see cousin Terry. She brought veggie soup and ginger snaps and we sat down and had a great visit. We visited wig options and there really is a favorite and second...both contingent on different things to make each right. One needs a shaping and cut and the other needs to be received in the proper size...so that matter is not yet resolved. I wear caps and scarfs for the time being. When I want to let my bare head breathe, I mostly find it chilly. Chilly and Central New York in winter...cal surprise.
Just after Terry departed, a call from Bernie came and she would be over in a half hour! Wow! Bernie and I had not seen each other to talk face-to-face in months. It turned out we chatted the gamut for many hours. Thoroughly enjoyed having spent the day visiting!
I was tuckered out and find I am fighting a cold...and it is cold. Today after tackling some paperwork and attempting to remedy some California affairs on the phone, I had to drop off papers to UPS. I could not believe the temp of the wind gusts I endured while walking into and from the store. It had me stop and really think about living in a climate such as this long term. I truly do not wish to continue on this path once I am well.
The patterns of people's behavior vary from region to region. This fact became apparent to me as a young teenager who traveled across the country gaining my first formal education post grade school. The patterns and norms and cultural variances later drew me to become a sociologist. My previous life experiences, the years spent elsewhere, cannot be erased. I have experienced a much milder way of life and want that again. There are some very positive things that have developed here in my old homeland and I have found places where I can experience a land-to-soul bond. But California beckons. If only I could be at the shore looking out to the Pacific...or touch the bark of a redwood tree.
Reality of the day is I am here and grateful for many reasons to be able to say that. When this challenging chapter of restoring balance to a body with cancer is over, there are new chapters to begin...So today, for the first time in a long while, I went ahead and looked online to distant places I hope to one day visit. It was a fun diversion. I looked at the village in Sicily, Castiglione, where my mother immigrated from. I recall the stories she once told and have a place in my heart earmarked for that place from which my mother came. I located rural lodging spots and those nearby the sea...and for now, that little hopeful dream is going to carry me through the remainder of this day.
I feel better but not great. I want to walk and have found it too dang cold to do so outdoors. I am going to set some exercise goals for the period of time in between chemo. And as the days get notably longer, I rejoice internally...
Just after Terry departed, a call from Bernie came and she would be over in a half hour! Wow! Bernie and I had not seen each other to talk face-to-face in months. It turned out we chatted the gamut for many hours. Thoroughly enjoyed having spent the day visiting!
I was tuckered out and find I am fighting a cold...and it is cold. Today after tackling some paperwork and attempting to remedy some California affairs on the phone, I had to drop off papers to UPS. I could not believe the temp of the wind gusts I endured while walking into and from the store. It had me stop and really think about living in a climate such as this long term. I truly do not wish to continue on this path once I am well.
The patterns of people's behavior vary from region to region. This fact became apparent to me as a young teenager who traveled across the country gaining my first formal education post grade school. The patterns and norms and cultural variances later drew me to become a sociologist. My previous life experiences, the years spent elsewhere, cannot be erased. I have experienced a much milder way of life and want that again. There are some very positive things that have developed here in my old homeland and I have found places where I can experience a land-to-soul bond. But California beckons. If only I could be at the shore looking out to the Pacific...or touch the bark of a redwood tree.
Reality of the day is I am here and grateful for many reasons to be able to say that. When this challenging chapter of restoring balance to a body with cancer is over, there are new chapters to begin...So today, for the first time in a long while, I went ahead and looked online to distant places I hope to one day visit. It was a fun diversion. I looked at the village in Sicily, Castiglione, where my mother immigrated from. I recall the stories she once told and have a place in my heart earmarked for that place from which my mother came. I located rural lodging spots and those nearby the sea...and for now, that little hopeful dream is going to carry me through the remainder of this day.
I feel better but not great. I want to walk and have found it too dang cold to do so outdoors. I am going to set some exercise goals for the period of time in between chemo. And as the days get notably longer, I rejoice internally...
Saturday, March 2, 2013
5 Days after and it's not-so-easy...
It was difficult pushing past the joint pain to get to sleep last night. I was up frequently throughout the night. I used Ativan. When I awoke for the day around 9:30 am, I got at a few chores initially: I put laundry into washer & vacuumed the place. At that point, Ed arrived and did a number of quite helpful tasks. Without him here, I am certain not a fraction of the accomplishments would have occurred. I soaked in the bathtub with detox minerals and I did not feel ok enough to do that without someone in the house. My bed was made, laundry brought up, the holes woodpeckers made were filled, errands were run and groceries supply replenished. Although I continue to not feel great, today had many high points. I am heartfully grateful to have a second day that brought me such kind assistance. Looking ahead to tomorrow, I believe I will be better. I am receptive to receive calls tomorrow after 10 am and if anyone who is well cares to come visit me, I would like that.
Friday, March 1, 2013
Surprise Help
This was a day of surprises. I was initially surprised at how much difficulty I had this morning. I had stayed very well hydrated and had been up during the night. By morning, I was simply out of energy. I felt bad. I was able to read email and enjoyed learning a friend wanted me to give a time for her to visit, but I didn't have the umph to write her back on my phone. I was feeling weak and unsure what to do, when Jackie called my cell. She was in the area and would be over soon.
Once she was here, after she got Trooper's needs handled, she was on to me. She brought more water, made me a smoothie, provided medicine. After the smoothie, I felt well enough to go to the kitchen. We examined the wig issue together. Next, Jackie made me fresh juice of all sorts of organic produce. Apples, cabbage, cucumber, ginger, celery and carrots...it felt empowering to drink the freshly squeezed juice. Jackie stayed all day and made my life better the whole time. I am so grateful for such a grand surprise. I remain very sore, but I have eaten well, am hydrated and feel like I'm tiring.
I can say that the forth day after chemo is again a ruff day. I hope to plan accordingly for the next round. I continue to amend the My Cancer Circle calender so that what I really need gets written in. I realize it is pretty structured to say I know I have a need on that day, but at this point, it seems like the most efficient strategy. I feel I have improved at being able to ask for help and to accept it graciously. Here is a link to the calender should you be interested: https://mycancercircle.lotsahelpinghands.com/c/700805/
I am hoping to feel much better tomorrow. I continue to work with my mind on pain management and the ability to simply accept and rest...I'm not claiming mastery, but I'm doing better at such tasks.
Once she was here, after she got Trooper's needs handled, she was on to me. She brought more water, made me a smoothie, provided medicine. After the smoothie, I felt well enough to go to the kitchen. We examined the wig issue together. Next, Jackie made me fresh juice of all sorts of organic produce. Apples, cabbage, cucumber, ginger, celery and carrots...it felt empowering to drink the freshly squeezed juice. Jackie stayed all day and made my life better the whole time. I am so grateful for such a grand surprise. I remain very sore, but I have eaten well, am hydrated and feel like I'm tiring.
I can say that the forth day after chemo is again a ruff day. I hope to plan accordingly for the next round. I continue to amend the My Cancer Circle calender so that what I really need gets written in. I realize it is pretty structured to say I know I have a need on that day, but at this point, it seems like the most efficient strategy. I feel I have improved at being able to ask for help and to accept it graciously. Here is a link to the calender should you be interested: https://mycancercircle.lotsahelpinghands.com/c/700805/
I am hoping to feel much better tomorrow. I continue to work with my mind on pain management and the ability to simply accept and rest...I'm not claiming mastery, but I'm doing better at such tasks.
Subscribe to:
Posts (Atom)