If my internal clock is shifting, then I have to adjust on the other side. I was again awake at 5:40 am and again after getting to bed in the wee hours. I realize there are some underlying factors that have me unsettled and know I have to get things sorted and regain peace of mind, which I had been maintaining well most of the time.
Last night, well, this morning, when I laid in bed to sleep, I ruminated over all of the ways this chemo has effected me. I questioned myself for changing the plan to have the sixth chemo, like I could change that! I wonder, though, because I knew I was fortunate and that the cancer certainly appeared to be gone some time ago and that my body was not experiencing the numerous side effects that they question me about each time I am seen in the infusion room - weekly. I figure, and this morning's reading would support this, that Vitamin C infusions have helped me tremendously with that. But, the sixth round just brought my body down. Again, no good can come of second guessing that which is done, except for if I can provide my info and someone else can then use it as when making his or her own decisions. Simply put, I believe that this decision was driven by fear. Dr. Cunningham felt very strongly, and made it clear, her recommendation was to have the sixth. I gave her opinion platinum status. So, now my body has more work to do than before and it may equate to an additional six weeks on the healing front; the time between fifth and sixth chemo's and that time added to overall healing. A body broken down (not to be mistaken as me in an evident weakened, frail state) and the notion that there's no way cancer can be alive in there...that's where I believe I am at.
Emotional difficulties and their toll on health has been on my mind. I wonder what the heck I am doing getting stressed out now. It is not a good idea on any level. I know that. But, it has been my reality for the past several days. No matter how I reasoned with myself, there has been a gut level feeling that something is off, for lack of better words. At this point, I believe I am getting a better grasp on it. But getting adequate rest, feeling at peace within, and having enough social interaction are all important pieces to wellness. Get with it, self! I believe I am ready to start getting out interacting a bit more and hope to steadily increase my recreation.
Today I shall ask Dr. Puc about detoxing, I will also discuss a few different sensations I have felt, Vitamin C, hair regrowth (it seems I have stubble coming in all over my head now) expectations, my CA 125 number, ...oh good, I'm falling asleep and will shut this down to gain another two hours of rest which will bring me up to six hours, if I succeed. More later.
Friday, May 31, 2013
Thursday, May 30, 2013
Happiness...progress...working through difficulties
It's already been a long morning at 7:20 am in terms of accomplishments. And what started out as me not sure what to do being awake at 5:45 am ended up with me deciding to get up and run a disinfectant through the jets of the jacuzzi before running a bath for myself. I also stood on the deck with Trooper, feeling the quiet of the morning. It was quite lovely. It is quite lovely this time of day, a time that I am generally not familiar with...seems it might be a positive progression for me to be up at sunrise, celebrating the new day and getting to bed much earlier. Tbr.
I am pleased to have helped two large flies move on and out of my home forever after they buzzed me while I gazed at the project below. My front yard needs work that I would enjoy doing: weeding, trimming, sweeping of steps, spreading new grass seed...Current thoughts are: after breakfast. And then the bath and then the call to Best Buy and the subsequent drive over for computer battery service. I thought this, realized the huge progress this represented, got really happy and decided to come sit and write it. I am feeling alive today. The list means I feel able to do those things and that means...forward movement toward wellness - of mind, body, spirit.
I'll say more later: it's breakfast time! Spinach with garlic, scrambled eggs and cheese with salsa...here I come.
It's hours later. I did go out and pull weeds, and trimmed with long sheers - edge grass that wasn't mowed and small limbs on a pine tree. All green matter is piled on the street for pick up. I worked up a big sweat and kept it going one hour. It was a really big deal. I felt good doing something constructive and the sweating must have been releasing toxins. My nose was also pouring out liquid. The bottom line is I accomplished and felt good for it and about it. It looks better. Later in the day as it misted for a few minutes, I went out and spread the grass seed.
I had two important business phone calls, each with some problems to tackle, and each was successful! A new battery is being shipped to me and thus I did not have to drive anywhere. Tomorrow, when I go to my doctor's appointment and Vitamin C infusion, I will drive for the first time in eight days.
I think of myself as on the upswing now, but the truth is last night I had a problem with my left ear that is hard to explain. It went kind of numb. Right now my right foot is doing the same. These are new feelings for me, although each time they ask me at the infusion room if either of these things has happened. Until now, I could say no. I have been lucky. And, I think I still am for lots of reasons. But, things are no where near normal. And normal...that funny word, is likely gonna be different, too.
I have reflected about so much this week, including how I turn to blog during times I feel utterly lonely. I am curious how others have felt while undertaking a huge physical challenge, or more specifically, while going through an intense chapter full of obstacles that is designed to save your life. I have admitted to myself and all readers here that I get very lonely while getting through the chemo aftermath. I accept that and bet it is fairly typical for those who, like it or not, are living alone and facing it predominantly alone with help as it can come. That struggle is more emotional. My moon is in Pisces, too. So I blog and think and blog when going through the tough parts. I write freely and I often do not edit. This week was tougher than any other chemo week. I wrote more often and sometimes, as the day went on, I re-read and edited, or one day this week, I erased a post. It was negative. I was struggling and I was not comfortable reading what I had written. This week, a couple of my friends have sent a little note and let me know they like to read my blog; I still hope some strangers who face ovarian cancer read it. If it is self-therapeutic, too, maybe that is a bonus. Am I digressing here? I want to clarify that when one is going through a very intense chapter like this has been and is, there are periods of confusion, the loneliness factor, the times of self-pity (yes, really), and the unmet needs that feel painful and they likely all come out in the musings.
Sometimes others see things in us we are blind to and visa versa. We are fortunate that as friends, we can provide one another insights. I am blessed with a wealth of close friendships: connections that are deep and timeless. I welcome input from anyone inclined to speak it. I pray to be open to hearing truths when they are presented to me, no matter how difficult. And I pray that I rest well tonight.
I am pleased to have helped two large flies move on and out of my home forever after they buzzed me while I gazed at the project below. My front yard needs work that I would enjoy doing: weeding, trimming, sweeping of steps, spreading new grass seed...Current thoughts are: after breakfast. And then the bath and then the call to Best Buy and the subsequent drive over for computer battery service. I thought this, realized the huge progress this represented, got really happy and decided to come sit and write it. I am feeling alive today. The list means I feel able to do those things and that means...forward movement toward wellness - of mind, body, spirit.
I'll say more later: it's breakfast time! Spinach with garlic, scrambled eggs and cheese with salsa...here I come.
It's hours later. I did go out and pull weeds, and trimmed with long sheers - edge grass that wasn't mowed and small limbs on a pine tree. All green matter is piled on the street for pick up. I worked up a big sweat and kept it going one hour. It was a really big deal. I felt good doing something constructive and the sweating must have been releasing toxins. My nose was also pouring out liquid. The bottom line is I accomplished and felt good for it and about it. It looks better. Later in the day as it misted for a few minutes, I went out and spread the grass seed.
I had two important business phone calls, each with some problems to tackle, and each was successful! A new battery is being shipped to me and thus I did not have to drive anywhere. Tomorrow, when I go to my doctor's appointment and Vitamin C infusion, I will drive for the first time in eight days.
I think of myself as on the upswing now, but the truth is last night I had a problem with my left ear that is hard to explain. It went kind of numb. Right now my right foot is doing the same. These are new feelings for me, although each time they ask me at the infusion room if either of these things has happened. Until now, I could say no. I have been lucky. And, I think I still am for lots of reasons. But, things are no where near normal. And normal...that funny word, is likely gonna be different, too.
I have reflected about so much this week, including how I turn to blog during times I feel utterly lonely. I am curious how others have felt while undertaking a huge physical challenge, or more specifically, while going through an intense chapter full of obstacles that is designed to save your life. I have admitted to myself and all readers here that I get very lonely while getting through the chemo aftermath. I accept that and bet it is fairly typical for those who, like it or not, are living alone and facing it predominantly alone with help as it can come. That struggle is more emotional. My moon is in Pisces, too. So I blog and think and blog when going through the tough parts. I write freely and I often do not edit. This week was tougher than any other chemo week. I wrote more often and sometimes, as the day went on, I re-read and edited, or one day this week, I erased a post. It was negative. I was struggling and I was not comfortable reading what I had written. This week, a couple of my friends have sent a little note and let me know they like to read my blog; I still hope some strangers who face ovarian cancer read it. If it is self-therapeutic, too, maybe that is a bonus. Am I digressing here? I want to clarify that when one is going through a very intense chapter like this has been and is, there are periods of confusion, the loneliness factor, the times of self-pity (yes, really), and the unmet needs that feel painful and they likely all come out in the musings.
Sometimes others see things in us we are blind to and visa versa. We are fortunate that as friends, we can provide one another insights. I am blessed with a wealth of close friendships: connections that are deep and timeless. I welcome input from anyone inclined to speak it. I pray to be open to hearing truths when they are presented to me, no matter how difficult. And I pray that I rest well tonight.
Wednesday, May 29, 2013
One week after the last chemo...
Here it is Wednesday. I'm looking out the window at birds...a decent pass-time. I'm also making a mental checklist of all I have to do. The list is daunting, but if I just tackle one thing a day...eventually I will be proud of that accomplishment, too. The beauty of completing something like cancer treatment (well, I'm not quite done; I hopefully have a couple of Vitamin C treatments to go and some sort of detox) is that it teaches a person so much. I know with more certainty than ever that if I just take any huge ordeal as something I can and need to get through, then it is pretty certain I will. So while getting my stuff pared down to a manageable amount and getting rid of the rest of it all seems huge, it surely will feel great when I am done. And stuff...so much stuff, is not healthy.
Yesterday it misted and I went out and mowed. I surprised myself in that although there were some near mishaps on the wet ground, I got the whole job done. Hooray! I am readying myself to get out there and repair the broken gate I discovered. I think it will be relatively easy to do and having a broken gate hanging wrong is not good. That will be my accomplishment of the day if I don't then get the energy to get in the car for the first time since last Thursday and drive to Best Buy where my computer warranty is ending tomorrow and they will give me a new battery before that deadline comes and goes. If not today, tomorrow.
Pushing myself is probably a good thing. I still feel like food is not very appealing and I still work to overcome nausea. It may take a few more days...but I'll get past it. And the fact I have shrunken my stomach and am eating mindfully and healthily is just the way it has to be. I have plans to take the 12" broken grill I have, remove the gas parts, then build a small fire in it, let it burn to coals and be able to cook a burger for myself by Friday.
I share these little things because they are rather big in their own ways. To want something to eat and not really have a way to get it is not generally how we operate. But when I see light at the end of a frustrating tunnel, a way to get something done for myself, or to overcome an obstacle, it is empowering.
I continue to think, sometimes too much. I have felt a gamut of emotions being here alone. Some realizations have left me quite sad. But the truth is, sadness has a place as one grows in life. Letting tears flow is healthy. The pattern of blaming myself for being naive or foolish is ending. I forgive myself for mistakes, and recognize that some of the hurtful things that are making me sad are just reminders that my needs are not met. That knowledge will help me to shape decisions.
Ok...good news. I went out to repair the fence. It was far more difficult than I initially thought because it was really tweeked. It's about lifing the chainlink, metal framed gate and getting it squared. It was heavier than it was last time I tried to lift it. I had to pound, with the flat head of a hatchet, on the metal pin holders...one had to come down and one up, only I didn't realize that at first. Oh I want to go on, because it was another one of those cool accomplishments. I was sweating and upset, but I simply kept at it. I had to angle one of the pin holders (not at all the right term) to match the angle of the other one and that is what finally led to getting it squared. It seems likely it had been pounced at to get it to the tweeked angle it was at. It is squarely hung and a done necessary on my list. It is extra exciting because as soon as I got inside, after walking out to get the mail and finding another project piece, the new interior handle to my car, it began to rain...and then it began to pour. It looked like a hurricane kind of front...really, really strong. It made me laugh as I thought about the time in Austin, TX, back in 1979, when it poured like this and I thought it was raining hard enough to shower outside. I got wet, lathered up, shampooed....and then discovered that actually, a shower has more force behind it than a central Texas downpour. I had long hair and it was impossible to get the shampoo rinsed. Life: full of trials and errors and experiences...that we remember and relive at our own whims.
So that concludes my extended version of life with cancer. I do not feel able to go to Best Buy. That can be tomorrow's accomplishment.
Cheers to another day...one a little better than the last one.
Yesterday it misted and I went out and mowed. I surprised myself in that although there were some near mishaps on the wet ground, I got the whole job done. Hooray! I am readying myself to get out there and repair the broken gate I discovered. I think it will be relatively easy to do and having a broken gate hanging wrong is not good. That will be my accomplishment of the day if I don't then get the energy to get in the car for the first time since last Thursday and drive to Best Buy where my computer warranty is ending tomorrow and they will give me a new battery before that deadline comes and goes. If not today, tomorrow.
Pushing myself is probably a good thing. I still feel like food is not very appealing and I still work to overcome nausea. It may take a few more days...but I'll get past it. And the fact I have shrunken my stomach and am eating mindfully and healthily is just the way it has to be. I have plans to take the 12" broken grill I have, remove the gas parts, then build a small fire in it, let it burn to coals and be able to cook a burger for myself by Friday.
I share these little things because they are rather big in their own ways. To want something to eat and not really have a way to get it is not generally how we operate. But when I see light at the end of a frustrating tunnel, a way to get something done for myself, or to overcome an obstacle, it is empowering.
I continue to think, sometimes too much. I have felt a gamut of emotions being here alone. Some realizations have left me quite sad. But the truth is, sadness has a place as one grows in life. Letting tears flow is healthy. The pattern of blaming myself for being naive or foolish is ending. I forgive myself for mistakes, and recognize that some of the hurtful things that are making me sad are just reminders that my needs are not met. That knowledge will help me to shape decisions.
Ok...good news. I went out to repair the fence. It was far more difficult than I initially thought because it was really tweeked. It's about lifing the chainlink, metal framed gate and getting it squared. It was heavier than it was last time I tried to lift it. I had to pound, with the flat head of a hatchet, on the metal pin holders...one had to come down and one up, only I didn't realize that at first. Oh I want to go on, because it was another one of those cool accomplishments. I was sweating and upset, but I simply kept at it. I had to angle one of the pin holders (not at all the right term) to match the angle of the other one and that is what finally led to getting it squared. It seems likely it had been pounced at to get it to the tweeked angle it was at. It is squarely hung and a done necessary on my list. It is extra exciting because as soon as I got inside, after walking out to get the mail and finding another project piece, the new interior handle to my car, it began to rain...and then it began to pour. It looked like a hurricane kind of front...really, really strong. It made me laugh as I thought about the time in Austin, TX, back in 1979, when it poured like this and I thought it was raining hard enough to shower outside. I got wet, lathered up, shampooed....and then discovered that actually, a shower has more force behind it than a central Texas downpour. I had long hair and it was impossible to get the shampoo rinsed. Life: full of trials and errors and experiences...that we remember and relive at our own whims.
So that concludes my extended version of life with cancer. I do not feel able to go to Best Buy. That can be tomorrow's accomplishment.
Cheers to another day...one a little better than the last one.
Tuesday, May 28, 2013
...fear...not!
I awoke to more realizations about what I want in my life and how to go on to the next chapter. I believe one of the keenest lessons I have gotten through involves fear. For many years, I have manifested my fears. Certainly without intention to do so. But my focus on the fears and energy invested in them helped to create them. I let that shit go when I got into the treatment aspects of stage IV ovarian cancer. Now, on the other side...or getting there, I have the opportunity to rise up a notch and continue on living my life consciously aware of fear and consciously pushing it aside when it rears itself into my life.
This morning, I got at some phonecalls involving bills and such. I also called the yoga for chemo patients course instructor. We spoke at length because as it turns out, the sessions offered are about to end and there will be no new course until September! Sad. I put off going until I felt better, frankly because adding another drive or two to Camillus during each week felt like too much. Well, the option to do so will be gone after June 4th. So, I do hope to make it to one or two of the classes before they conclude. The instructor told me about an exercise class that I may wish to learn more about, and I shall today. She also spoke to me about how long I might expect the chemo to remain in me...or how long til it is completely gone. Her literature states that if I had chemo over the course of 18 weeks, which is the case, it may take that many weeks until I am free of it. Ok. A concrete notion to contend with. I know myself to be strong and tenacious. I hope to feel it out of me via diet and detoxing, but I need to learn more about these this week.
Back to fear. I am strongly aware of the fact that fear stops people from living with vitality. Thinking ahead and fearing a shortage, for example, provokes people to say no to wondrous opportunities for joy. After facing death's doorstep head on, I am not willing to be a fear-based thinker. Amen. I realize it will try to gain footage, but I hope my brain and experiences and wisdom will prevent it - fear - from having much of an impact on decisions. I have always made practical decisions and like that about myself. I do not lean toward extravagance nor do I base my identity on obvious status symbols. My accomplishments and ability to retain spiritual lessons have far more bearing on my life and choices. With that said, the accomplishments do not necessarily fall into the same categories as most folks do. I will add that the accomplishment of bravely going through all that I have to be ovarian cancer free constitutes one of the best I have ever encountered or endured. Now to take my worn down body and rebuild it, lovingly, and to determine what is the best next on my life agenda is where I am at.
I have been having a strong, strong draw to go see the places in nature that I am aware of and have wanted to see. These are largely in National Parks. I have given serious thought to selling my house and buying a small, older Toyota RV that will allow me to travel with Trooper, who after all, is part of my life. He adds work, but I committed to him years ago. I could take a block of time, unbeknownst and non-rigid, and allow myself to see that which will nourish my soul. I am not fearful of my ability to do so alone, although that is not at all my preference. But today, here and now, my preference is in embracing the fact I got the chance to live on. I know that the ability to do some of the things I want to is finite, for it is dictated by years of age and physical conditions. And physical conditions are effected by weather, for example. I know that the harsh central New York winters hurt my body. So that is on my mind. I want to honor myself and dreams...but there is more to this whole dilemma.
I'm about to call for a job interview here....I tested quite well a long time ago, over a year and a half, for two different civil servant positions. I have been canvassed for one opportunity. I will go give it my best. But the truth appears to be ageism in hiring is an unspoken aspect to contend with. So, I can go give it my best, and accept the outcome may be no offer of work. I thank the spirits I feel talented enough to go get myself to a place I want to stay and to then find my niche...my way to earn a living. I intend to go back to mediation, which allows me to help others to help themselves. I have other job possibilities in my old home region on the Northcoast. I have been trying to land employment here in some structured and secure environment to no avail for too long. Clearly there are reasons for me to still be here and getting great cancer treatment is one of them, but I simply cannot sit here without work any longer. Once well enough, something must give. And that give may force me to become braver in many ways.
My heart and mind know what my truths are...what matters most. I have had plenty of time to devote to contemplating such things while undergoing chemo and the aftermath of it's ability to kill off cancer. I am truly worn down now, weaker than perhaps ever physically, but mentally, I am ready to make my dreams come true.
With that said, fear can rest it's cap, for it has shaded me far too long. I now know what it feels like to get over it...to push thoughts aside that are fear-based, to be at peace from within, and to dream of what I want to manifest next.
With that spirit, let me see if I do or do not have the strength to get out there and mow my property. Even if it is one section at a time. The grass is way taller than any other neighbor and I simply did not have the time to tackle the mowing last Tuesday when I was undoing the trip, and otherwise readying myself for the last chemo. So it is two weeks tall and with rain threatening, I see the importance of getting out there and at least trying. Sadly, as I look out, I see it is misting. I have to hope this will work out. And this is when my frustration gets the best of me. I had no way to do this any previous day. Today, it is a marginal possibility. But perhaps the weather is not going to allow me. I shall have to accept the limits presented with the situation.
This morning, I got at some phonecalls involving bills and such. I also called the yoga for chemo patients course instructor. We spoke at length because as it turns out, the sessions offered are about to end and there will be no new course until September! Sad. I put off going until I felt better, frankly because adding another drive or two to Camillus during each week felt like too much. Well, the option to do so will be gone after June 4th. So, I do hope to make it to one or two of the classes before they conclude. The instructor told me about an exercise class that I may wish to learn more about, and I shall today. She also spoke to me about how long I might expect the chemo to remain in me...or how long til it is completely gone. Her literature states that if I had chemo over the course of 18 weeks, which is the case, it may take that many weeks until I am free of it. Ok. A concrete notion to contend with. I know myself to be strong and tenacious. I hope to feel it out of me via diet and detoxing, but I need to learn more about these this week.
Back to fear. I am strongly aware of the fact that fear stops people from living with vitality. Thinking ahead and fearing a shortage, for example, provokes people to say no to wondrous opportunities for joy. After facing death's doorstep head on, I am not willing to be a fear-based thinker. Amen. I realize it will try to gain footage, but I hope my brain and experiences and wisdom will prevent it - fear - from having much of an impact on decisions. I have always made practical decisions and like that about myself. I do not lean toward extravagance nor do I base my identity on obvious status symbols. My accomplishments and ability to retain spiritual lessons have far more bearing on my life and choices. With that said, the accomplishments do not necessarily fall into the same categories as most folks do. I will add that the accomplishment of bravely going through all that I have to be ovarian cancer free constitutes one of the best I have ever encountered or endured. Now to take my worn down body and rebuild it, lovingly, and to determine what is the best next on my life agenda is where I am at.
I have been having a strong, strong draw to go see the places in nature that I am aware of and have wanted to see. These are largely in National Parks. I have given serious thought to selling my house and buying a small, older Toyota RV that will allow me to travel with Trooper, who after all, is part of my life. He adds work, but I committed to him years ago. I could take a block of time, unbeknownst and non-rigid, and allow myself to see that which will nourish my soul. I am not fearful of my ability to do so alone, although that is not at all my preference. But today, here and now, my preference is in embracing the fact I got the chance to live on. I know that the ability to do some of the things I want to is finite, for it is dictated by years of age and physical conditions. And physical conditions are effected by weather, for example. I know that the harsh central New York winters hurt my body. So that is on my mind. I want to honor myself and dreams...but there is more to this whole dilemma.
I'm about to call for a job interview here....I tested quite well a long time ago, over a year and a half, for two different civil servant positions. I have been canvassed for one opportunity. I will go give it my best. But the truth appears to be ageism in hiring is an unspoken aspect to contend with. So, I can go give it my best, and accept the outcome may be no offer of work. I thank the spirits I feel talented enough to go get myself to a place I want to stay and to then find my niche...my way to earn a living. I intend to go back to mediation, which allows me to help others to help themselves. I have other job possibilities in my old home region on the Northcoast. I have been trying to land employment here in some structured and secure environment to no avail for too long. Clearly there are reasons for me to still be here and getting great cancer treatment is one of them, but I simply cannot sit here without work any longer. Once well enough, something must give. And that give may force me to become braver in many ways.
My heart and mind know what my truths are...what matters most. I have had plenty of time to devote to contemplating such things while undergoing chemo and the aftermath of it's ability to kill off cancer. I am truly worn down now, weaker than perhaps ever physically, but mentally, I am ready to make my dreams come true.
With that said, fear can rest it's cap, for it has shaded me far too long. I now know what it feels like to get over it...to push thoughts aside that are fear-based, to be at peace from within, and to dream of what I want to manifest next.
With that spirit, let me see if I do or do not have the strength to get out there and mow my property. Even if it is one section at a time. The grass is way taller than any other neighbor and I simply did not have the time to tackle the mowing last Tuesday when I was undoing the trip, and otherwise readying myself for the last chemo. So it is two weeks tall and with rain threatening, I see the importance of getting out there and at least trying. Sadly, as I look out, I see it is misting. I have to hope this will work out. And this is when my frustration gets the best of me. I had no way to do this any previous day. Today, it is a marginal possibility. But perhaps the weather is not going to allow me. I shall have to accept the limits presented with the situation.
Monday, May 27, 2013
...as Monday ends...
Sometimes my headspace shifts. I read what I wrote hours ago and I don't feel like whining now, so I erased it! I went through a period of time today where I felt uncomfortable with being here and now. I missed the Northcoast and wanted a grass-fed burger well done on a whole wheat bun. I need to be patient until I can do more for myself. Feeling sad contributes nothing good. But it was another tough day in many ways.
I have recently watched most of the 25th Anniversary of the Rock and Roll Hall of Fame Concert (2009). This is a high, high recommend event to view and catch the good vibes from. The cast and jams were stellar. I realize I need to get out and see some music as soon as possible. Music keeps me together. I have known a long while. Watching the show brought joy back into me. Post show overall feeling: much better.
It was a day that had me the recipient of kindness...a grocery delivery courtesy of Patti. Barb texted and I skyped with Lynn...today's social interactions. The day is nearing over. I hope to again get 10 or 11 hours sleep. Last night was broken up rest. I have phone business ahead for tomorrow and am hopeful I shall feel much better by morning. This is a slow recovery. Initially when chemo was discussed, it was spoken of as six chemo sessions if you can handle it. If you can handle it indicates a knowledge that you will be hitting your limit. I accept my decision to schedule the sixth round back in knowing that I was likely to have my worst chemo to date. And sure enough, it is. I hope for faster healing than is happening and then have to love myself for where I am at. I find the process still difficult, but easier than it had been. I'm getting it. There are, indeed, lessons from the journey through ovarian cancer.
I have recently watched most of the 25th Anniversary of the Rock and Roll Hall of Fame Concert (2009). This is a high, high recommend event to view and catch the good vibes from. The cast and jams were stellar. I realize I need to get out and see some music as soon as possible. Music keeps me together. I have known a long while. Watching the show brought joy back into me. Post show overall feeling: much better.
It was a day that had me the recipient of kindness...a grocery delivery courtesy of Patti. Barb texted and I skyped with Lynn...today's social interactions. The day is nearing over. I hope to again get 10 or 11 hours sleep. Last night was broken up rest. I have phone business ahead for tomorrow and am hopeful I shall feel much better by morning. This is a slow recovery. Initially when chemo was discussed, it was spoken of as six chemo sessions if you can handle it. If you can handle it indicates a knowledge that you will be hitting your limit. I accept my decision to schedule the sixth round back in knowing that I was likely to have my worst chemo to date. And sure enough, it is. I hope for faster healing than is happening and then have to love myself for where I am at. I find the process still difficult, but easier than it had been. I'm getting it. There are, indeed, lessons from the journey through ovarian cancer.
Sunday, May 26, 2013
tryin' my best to roll with it...
It's Sunday. I still feel run down, nauseous when attempting foods, and am trying to just roll with what is. I feel lonesome and as always, don't like being alone during the tough times. Patti dropped in to drop off some freshly made kale and carrot juice and although I cried, I sure liked having her here for a little while. I laid in bed crying this morning, reflecting back on just one week ago and how I was not alone for several days in contrast to now. It's a difficult thing to be able to rationalize that this will pass, that no matter how difficult, I will get through this, how the worst of it is over, how honestly proud of myself I am for all I have been through with relatively few doubts...and how alone has been my norm for so dang long this stretch shouldn't bother me. And yet, as has been the case after every single chemo, it does bother me to be alone.
I have looked at interesting things on the internet, fallen asleep at the computer, thought about that which there is to be grateful for (lots!) and tried to eat something that can hold my interest past being nauseous. No luck on that. The oatmeal didn't taste good to me, so I had toast with cashew butter, not much of it, but perhaps enough. I'm sipping the freshly made juice, an hour later, guess it is actually no longer freshly made, but still packed with nutrition. I would like to talk with someone...to visit. I did get to visit with my granddaughter yesterday via skype and also with my cousin and daughter on the phone. First Barb with oatmeal then Ed with beans came by yesterday morning. Those interactions helped me. I think as I struggle though pieces of the end of this journey, I need support more than I thought I would.
Maybe I'm being childish. Even so, my feelings are real. I have thought of trying to walk down to the car and driving somewhere, but am faced with the same old problem. Even if I felt strong enough to really carry that thought out, where would I go? I have no beach here. I do have the lingering memories of last week's beach moments...and I embrace these.
Anyone who reads this...feel free to call me...if you can, and you are well, come by. Visit with me. I would sincerely enjoy the company. I have no new stories, but can listen to yours....
I have looked at interesting things on the internet, fallen asleep at the computer, thought about that which there is to be grateful for (lots!) and tried to eat something that can hold my interest past being nauseous. No luck on that. The oatmeal didn't taste good to me, so I had toast with cashew butter, not much of it, but perhaps enough. I'm sipping the freshly made juice, an hour later, guess it is actually no longer freshly made, but still packed with nutrition. I would like to talk with someone...to visit. I did get to visit with my granddaughter yesterday via skype and also with my cousin and daughter on the phone. First Barb with oatmeal then Ed with beans came by yesterday morning. Those interactions helped me. I think as I struggle though pieces of the end of this journey, I need support more than I thought I would.
Maybe I'm being childish. Even so, my feelings are real. I have thought of trying to walk down to the car and driving somewhere, but am faced with the same old problem. Even if I felt strong enough to really carry that thought out, where would I go? I have no beach here. I do have the lingering memories of last week's beach moments...and I embrace these.
Anyone who reads this...feel free to call me...if you can, and you are well, come by. Visit with me. I would sincerely enjoy the company. I have no new stories, but can listen to yours....
Friday, May 24, 2013
...two days after my last chemo!
It's Friday! Wednesday night Patti brought me organic salad and smoothie...I had to leave my car at the lot and reached out to Bernie to get me home from chemo. Ed drove me to my Vitamin C infusion Thursday morning and I drove my car home. Jackie came over to help me out last night. This morning, after drinking plenty of beverages, including cranberry water and lemon water, I ate scrambled eggs with spinach and cheese. Something came up and Jackie had to leave...but she had cut up some fruits for juicing and I have since drank fresh apple, carrot, cabbage and ginger juices. I am reading about ways to build my immune system, the most nutritious foods, etc. I will be talking to my integrative oncologist about detoxing when I see her Friday. Meanwhile, I feel relatively good. I deal with bouts of nausea with herb and aim to keep hydrated.
I'm realizing that I am done with chemo...I mean I am letting myself embrace this notion. It was February 5 when I began chemo treatments and on May 22, I had my last infusion of chemo. I know that the last five CA-125 readings have been in the normal range, steadily decreasing over time. I look forward to hearing what the result from Wednesday's draw is, because last I knew, it was down to 2.5!
I will always be grateful that the cancer did as I envisioned: it responded to the chemotherapy. It shriveled up and allowed me to quit being it's hostess. My aim now is to create a body that will not allow such growth ever again. Amen.
My sheets are in the dryer. I have soaked in cellular detox bath salts with the jacuzzi jets soothing my body. I am going very slow, but feel decent.
I received notice of another donation today and it truly moved me. The ramifications of the cancer and treatment are not complete; unpaid balances remain and I will likely not be able to continue with Vitamin C infusions nearly as long as is recommended. The help of those who care about me has been the thread that kept me going. I warded off fear as much as was possible and needed, because it crept up as I worried about monies. At some point I let go and it seems like one surprise after the next decent idea have kept me going. It is beyond the scope of my current mindset to put into words what I hope to one day be able to say. My mind has indeed suffered some from the chemo, or it sure seems that way. But I know that this, too, shall pass. Fuzziness will subside. I will survive, I will get by and, indeed, I will thrive.
So on that note and with gratitude to many, including myself for not failing me, I shall rest again and reflect on that which I have to be thankful for: PLENTY!
With so much love to so many...who sent positive, loving thoughts and more...those who cared for me...my, my, my how I look forward to sharing more life with you!
I'm realizing that I am done with chemo...I mean I am letting myself embrace this notion. It was February 5 when I began chemo treatments and on May 22, I had my last infusion of chemo. I know that the last five CA-125 readings have been in the normal range, steadily decreasing over time. I look forward to hearing what the result from Wednesday's draw is, because last I knew, it was down to 2.5!
I will always be grateful that the cancer did as I envisioned: it responded to the chemotherapy. It shriveled up and allowed me to quit being it's hostess. My aim now is to create a body that will not allow such growth ever again. Amen.
My sheets are in the dryer. I have soaked in cellular detox bath salts with the jacuzzi jets soothing my body. I am going very slow, but feel decent.
I received notice of another donation today and it truly moved me. The ramifications of the cancer and treatment are not complete; unpaid balances remain and I will likely not be able to continue with Vitamin C infusions nearly as long as is recommended. The help of those who care about me has been the thread that kept me going. I warded off fear as much as was possible and needed, because it crept up as I worried about monies. At some point I let go and it seems like one surprise after the next decent idea have kept me going. It is beyond the scope of my current mindset to put into words what I hope to one day be able to say. My mind has indeed suffered some from the chemo, or it sure seems that way. But I know that this, too, shall pass. Fuzziness will subside. I will survive, I will get by and, indeed, I will thrive.
So on that note and with gratitude to many, including myself for not failing me, I shall rest again and reflect on that which I have to be thankful for: PLENTY!
With so much love to so many...who sent positive, loving thoughts and more...those who cared for me...my, my, my how I look forward to sharing more life with you!
Wednesday, May 22, 2013
...Chemo infusion #6! (after a wonderful excursion south)
Weeks busily went by since the last post. There's really fun stuff to share as I've recently returned from a road trip to Chincoteague Island, VA (CIVA) with an afternoon/overnight in DC/Silver Spring on the way back!
From the time Ed told me about Assateague Island, where the wild ponies live on the Atlantic's edge, I looked forward to a time we would enjoy it together. Internet research helped a lodging plan come together about a week in advance. We drove south Wednesday morning and after several toll roads through PA, the juxtaposition of the final rural roads that led to CIVA stands out. We arrived at Snug Harbor and the proprietor had steel drum & marimba music piping...it was a positive, welcoming greeting! After discussing the possibilities of renting a double kayak (the first time the wind seemed calm) and where to paddle, also where to eat, we headed into our cool, pine-walled, one bedroom cabin. It was welcoming and cozy, as is the best way to describe a double bed. The setting, calm atmosphere, and the easy vibe between us is memorable. Our dinner and first evening at Snug Harbor were great.
Thursday, I was awake earlier than Ed and got breakfast going. It seemed calm and was sunny. A nutritious, substantial breakfast would be requisite of a paddle in the bay...and after we ate and packed up beverages & lunch & snacks, a double Old Town kayak was under our butts and we were underway in Chincotegue Bay. Basia, a proprietor, upon spotting a herd of ponies in the distance revised initial paddle plan for us and with very marginal experience, but good collaborative skills, we weaved away toward the big red barn building far in the distance. We got better as we made progress, but fought a bit of a wind initially. We were proud of our first goal met: arrival on the private beach section adjacent a herd of wild horses and ponies and foals! We drank, ate, and observed. There were quite a few motorized vessels going out to the ocean, a couple in two kayaks, the shoreline, waterfowl and the horses to marvel at...and we did. A foal ran back and forth and started a little ruckus across a small channel...an egret next to a marsh behind us seemed to gaze in the water; we took it all in peacefully. When we paddled away, we went up the little channel and hung next to the ponies while they stood in the water in a herd. It was fabulous! The entire day was...and the paddle ended up encompassing 4.5 hours and between five to six miles. We became quite a good team at some point in time after the stop on the beach. It was sunny, relatively calm, and warm toward hot. We arrived back to shore tired, thirsty, sunburned and accomplished! After showering, resting under a tiki hut and enjoying some beverages, we made it out to eat a barbecue outdoor meal that was recommended and then drove out to Assateague Island and saw the Atlantic. A shoreline park back on CIVA was where we stopped to take in a gorgeous sunset. Indeed, we had a stellar day.
On Friday, we slowed our pace after such a rigorous day and after packing the car and checking out of lodging-stop-one, we explored CIVA more, including walking throughout the historical island museum, eating organic salads and sandwiches, then crossing the bridge and spending the remainder of the day exploring Assateague Island. We chose a recommended trail that made us the choice target to itty, bitty biting bugs. Suffered, especially my head. After visiting the Nation Park interpretive center, we spent the rest of the day relaxing, shell collecting and wandering into the Atlantic. I love the Oceanside and Ed! After checking into our room in a comfortable bay shore motel, we ate a fantastic dinner at a nice place and thus had another grand day and night during which memories were created along the way.
Saturday morning we awoke to rain, ate comp. breakfast provided by motel and decided to go to the NASA museum just over the causeway. We had a good time taking it all in for hours. What a well put together museum, particularly given it was feeless. We shopped together back on CIVA. Upon return to our room and showering the sand and funk of the day away, we took our trolley tokens we had gained days before and rode to eat a diner-style meal, only to re-board the trolley car to our next stop: Island Creamery, for ice cream! T'was super yummy! Next we caught the trolley for a last ride back to the motel.
Breakfast at motel, packing up room and driving off toward Silver Spring, we're how the remainder of this leg of the journey ended on Sunday. It took a long while to negotiate accidents and road work, but we made it to the Greek music concert at Lincoln Hall, nearby the Capitol, in time to see all of Karpouzi's performances. Len is an integral piece to the three piece band, as is Margaret, who I met years ago. Each set covered a different area of Greece. It was mind expanding music, with enough similarity to the Italian music I grew accustomed to, but know little of, to remind me of my maternal grandfather playing his wooden "whistle" and stomping his foot. Cool, as was driving with Lisa navigating us to her house. Lisa, her dad and stepmom, who I finally met!, and Len, began scurrying around dealing with dinner preps. Clearly they put a lot of loving energy into getting so much ready to heat up or cook on the grill. The Greek dinner was a feast that all enjoyed. I spent a little time talking w Lisa, and soon thereafter, headed upstairs to bed. Despite tiredness, it was difficult to sleep.
Monday morning was the last of the trip... Sadly missed saying goodbye to Len or Lacey who had already headed off to work. With Ed's daughter and son-in-law pending arrival to his place, he had a goal of getting home late afternoon. More strange traffic snarls made such a goal impossible, but it was what it was, a pretty drive and home to myriad chores by 7:30 pm.
Chores are always tedious when home from days away: mail of my own and mother's to sort and address, garage newspaper topped with dog poo and pee, to be cleaned up, vacuuming, meal, laundry to do, suitcases and stuff to reintegrate...and I kept at it til too exhausted. I soaked in bathtub, came out more relaxed! Got laundry going and was asleep before midnight.
Yesterday was spent further accomplishing...laundry, limited phone calls, eating, shopping for foods, meeting up with Ed and his family briefly, then home to complete laundry, prep for chemo, etc.
And here I am. Infusing away. This is it!! Unlike others I know, I had the oomph to complete entire course of treatment. And I am admittedly tired, often. The high humid heat is difficult for me. But I'm doing! I wish I was better, but am glad to be no worse. Logistics are not fully made, but I'm working on it from here, best I can. Tomorrow Vit C is at 10:30... Need a ride from my house to here & will bring car home w me at that time. I'm realizing that I should not try to drive myself home today.
I am not worrying now at the homestretch. Body is worn down, but all things considered, it could have been much worse. I'll work on nutrition and exercise to mend...and will be gleeful! Now...back to sleep, induced by Ativan.
From the time Ed told me about Assateague Island, where the wild ponies live on the Atlantic's edge, I looked forward to a time we would enjoy it together. Internet research helped a lodging plan come together about a week in advance. We drove south Wednesday morning and after several toll roads through PA, the juxtaposition of the final rural roads that led to CIVA stands out. We arrived at Snug Harbor and the proprietor had steel drum & marimba music piping...it was a positive, welcoming greeting! After discussing the possibilities of renting a double kayak (the first time the wind seemed calm) and where to paddle, also where to eat, we headed into our cool, pine-walled, one bedroom cabin. It was welcoming and cozy, as is the best way to describe a double bed. The setting, calm atmosphere, and the easy vibe between us is memorable. Our dinner and first evening at Snug Harbor were great.
Thursday, I was awake earlier than Ed and got breakfast going. It seemed calm and was sunny. A nutritious, substantial breakfast would be requisite of a paddle in the bay...and after we ate and packed up beverages & lunch & snacks, a double Old Town kayak was under our butts and we were underway in Chincotegue Bay. Basia, a proprietor, upon spotting a herd of ponies in the distance revised initial paddle plan for us and with very marginal experience, but good collaborative skills, we weaved away toward the big red barn building far in the distance. We got better as we made progress, but fought a bit of a wind initially. We were proud of our first goal met: arrival on the private beach section adjacent a herd of wild horses and ponies and foals! We drank, ate, and observed. There were quite a few motorized vessels going out to the ocean, a couple in two kayaks, the shoreline, waterfowl and the horses to marvel at...and we did. A foal ran back and forth and started a little ruckus across a small channel...an egret next to a marsh behind us seemed to gaze in the water; we took it all in peacefully. When we paddled away, we went up the little channel and hung next to the ponies while they stood in the water in a herd. It was fabulous! The entire day was...and the paddle ended up encompassing 4.5 hours and between five to six miles. We became quite a good team at some point in time after the stop on the beach. It was sunny, relatively calm, and warm toward hot. We arrived back to shore tired, thirsty, sunburned and accomplished! After showering, resting under a tiki hut and enjoying some beverages, we made it out to eat a barbecue outdoor meal that was recommended and then drove out to Assateague Island and saw the Atlantic. A shoreline park back on CIVA was where we stopped to take in a gorgeous sunset. Indeed, we had a stellar day.
On Friday, we slowed our pace after such a rigorous day and after packing the car and checking out of lodging-stop-one, we explored CIVA more, including walking throughout the historical island museum, eating organic salads and sandwiches, then crossing the bridge and spending the remainder of the day exploring Assateague Island. We chose a recommended trail that made us the choice target to itty, bitty biting bugs. Suffered, especially my head. After visiting the Nation Park interpretive center, we spent the rest of the day relaxing, shell collecting and wandering into the Atlantic. I love the Oceanside and Ed! After checking into our room in a comfortable bay shore motel, we ate a fantastic dinner at a nice place and thus had another grand day and night during which memories were created along the way.
Saturday morning we awoke to rain, ate comp. breakfast provided by motel and decided to go to the NASA museum just over the causeway. We had a good time taking it all in for hours. What a well put together museum, particularly given it was feeless. We shopped together back on CIVA. Upon return to our room and showering the sand and funk of the day away, we took our trolley tokens we had gained days before and rode to eat a diner-style meal, only to re-board the trolley car to our next stop: Island Creamery, for ice cream! T'was super yummy! Next we caught the trolley for a last ride back to the motel.
Breakfast at motel, packing up room and driving off toward Silver Spring, we're how the remainder of this leg of the journey ended on Sunday. It took a long while to negotiate accidents and road work, but we made it to the Greek music concert at Lincoln Hall, nearby the Capitol, in time to see all of Karpouzi's performances. Len is an integral piece to the three piece band, as is Margaret, who I met years ago. Each set covered a different area of Greece. It was mind expanding music, with enough similarity to the Italian music I grew accustomed to, but know little of, to remind me of my maternal grandfather playing his wooden "whistle" and stomping his foot. Cool, as was driving with Lisa navigating us to her house. Lisa, her dad and stepmom, who I finally met!, and Len, began scurrying around dealing with dinner preps. Clearly they put a lot of loving energy into getting so much ready to heat up or cook on the grill. The Greek dinner was a feast that all enjoyed. I spent a little time talking w Lisa, and soon thereafter, headed upstairs to bed. Despite tiredness, it was difficult to sleep.
Monday morning was the last of the trip... Sadly missed saying goodbye to Len or Lacey who had already headed off to work. With Ed's daughter and son-in-law pending arrival to his place, he had a goal of getting home late afternoon. More strange traffic snarls made such a goal impossible, but it was what it was, a pretty drive and home to myriad chores by 7:30 pm.
Chores are always tedious when home from days away: mail of my own and mother's to sort and address, garage newspaper topped with dog poo and pee, to be cleaned up, vacuuming, meal, laundry to do, suitcases and stuff to reintegrate...and I kept at it til too exhausted. I soaked in bathtub, came out more relaxed! Got laundry going and was asleep before midnight.
Yesterday was spent further accomplishing...laundry, limited phone calls, eating, shopping for foods, meeting up with Ed and his family briefly, then home to complete laundry, prep for chemo, etc.
And here I am. Infusing away. This is it!! Unlike others I know, I had the oomph to complete entire course of treatment. And I am admittedly tired, often. The high humid heat is difficult for me. But I'm doing! I wish I was better, but am glad to be no worse. Logistics are not fully made, but I'm working on it from here, best I can. Tomorrow Vit C is at 10:30... Need a ride from my house to here & will bring car home w me at that time. I'm realizing that I should not try to drive myself home today.
I am not worrying now at the homestretch. Body is worn down, but all things considered, it could have been much worse. I'll work on nutrition and exercise to mend...and will be gleeful! Now...back to sleep, induced by Ativan.
Tuesday, May 7, 2013
...what the big boss say...or...what my path looks like now
Today was the big day. I should start by saying that it was one of my 'truth darts' or 'ice cream cone kid' moments that redirected me initially to say that despite what Dr. Puc and I decided, it would be the advise of Dr. Cunningham I would take. I was driving in my car and the concept hit me hard...as if to say "hold on...you do not have all the information you need to know what is right"...
Good foreshadowing, eh? Well, let me say more before I say more. Today went differently than I had anticipated. I got up and had a phone call and an invite to go to lay at Lake Ontario this morning. After I took a raincheck for Thursday on that notion, I went through my winter clothes and summer clothes and swapped them out. It is a job that happens twice a year here in CNY. It takes time and effort. I have a bin in my closet to store the non seasonal clothing. I got it done and then got ready to leave for my appointment to Dr. Cunningham. Earlier I had scheduled the oil change I had been stressing over for tomorrow morning. I did so online. I realized that I could drop off the car, walk over to yoga, attend yoga practice and return and pick up the car and never have to smell the nasty tire smell I dreaded for it's nausiating aspects. Good call.
As I walked out to leave I received a text asking me if I wanted to be accompanied to my appointment. I answered honestly. Ed met me in front of the building and we arrived on time. It was nice to have him to chat with in the room while we waited for the doctor to come in. When she did, it unfolded in it's own way, like appointments do. It became evident that Dr. Puc's office did not forward all info to Dr. Cunningham. I cannot make any excuses for them on that. It has been weeks since she and I met and recrafted the treatment plan so that my last chemo was my last chemo. Dr. Cunningham made it clear to me that the data for Stage IV Ovarian cancer patients and remission was based on six chemo rounds or eight...but not five. When I brought up the PET scan she seemed mildly irritated. She said she did not care what it showed because it only shows cells groups of a certain size and not smaller. I had realized early on that Dr. Puc was taking a traditional course in treating me. I learned today that Dr. Cunningham's course would have been different. For example, she said she read that the Neulastra had been discontinued due to my complaints of agonizing pain. She said she does not routinely give those shots, only when cell counts indicate a need for them because of the suffering all patients complain of. Oh. Dr. Cunningham was different in her interactions with me today than previously. She looked at Ed and spoke with Ed. She seemed comfortable that he was there. In a sense, it felt like she looked at him as what I refer to myself as in some situations: the voice of reason. She seemed to respect him. I told her that I chose to work with Dr. Puc because I made the decision I wanted Vitamin C infusions. I said that I knew that Dr. Puc is not an ovarian cancer specialist. I credited her with that title and stated that I was there for her expertise. She did not hesitate to say it in more than one way...there is no reason to stop treatment at five chemo infusions. If I want my remission to be long-standing, I should be willing to endure another treatment to give myself the best chance of that. One of the more positive things she asked and responded to was if I knew how quickly the CA 125 number went down after chemo. When I told her that after the second chemo it was down to 7.5, she showed happiness. She said that was an indicator of how well the remission might go. The fact the cancer responded quickly and died off to a normal antigen reading bodes well for my probabilities of what I want to call a cure. And that was just what Dr. Brown at Memorial Sloan-Kettering stated that day in November so long ago. She said that I had a 45-50% chance of being cured. I liked that...as did Lisa, who I'm sure remembers that too. I do not often hear the word cure in relation to ovarian cancer, in fact, Dr. Puc said there is no cure for ovarian cancer. But if remission goes on past 10 years, one might go ahead and use that word "cure." And there are plenty of people who meet that criteria.
So tomorrow, when I go in to meet the nurse, I need to reschedule my sixth and last chemo for the same day it had been, May 21. I need to ask for help now. I know Ed, who has been very helpful to me, is going to be busy with family that entire week. I have some ideas. I will have to reach out more and possibly be alone far more than I want to. But it will really be it and that should help push me past discomfort somewhat. I have no idea whether or not I will have any eyebrows left. When I look in the mirror now, I get surprised. I'm not used to how I look. But, this too shall pass. Amen.
The appointment at Dr. Cunningham involved discussion of the blood tests for ovarian and breast cancer markers, genetic testing. I have to return on June 7 and will discuss the test and give the blood that goes to one lab in Utah, I believe. That will be another thing to wait to know more about. I shall update on that as the info becomes available. I know it matters a lot to my daughter. My gut tells me it will be negative. We shall see.
As Ed and I walked out of the office, we both admitted we thought Dr. Cunningham was going to say you are not done. She was adamant about it. I was compelled to tell her again that it was her that was on the frontline as the surgeon that got me on the path and she seemed gracious about taking that gratitude, but swiftly turned it to: well then lets complete the treatment plan...
So, next on this day that unfolded unpredictably, I mentioned wanting to clean my car and Ed mentioned me coming over and next thing I knew, after stopping at a farmstand with plants, we went to Ed's house and began cleaning my trunk, then interior. It was a project. I know now why I was stressing. There was a LOT in there. All kinds of stuff. We did fill two kitchen trash bags and also created a small give away bag. A box was filled with stuff that belongs in my garage, too. And then the interior got gone through. More purging...then vacuuming. I got hot and tired in the process and took a break in the house to regroup and cool off. And now...the car is ready for one more vacuuming and the interior of the windows to be cleaned. I shall accomplish such tomorrow afternoon, after the infusion. I am very relieved that is done. After the car cleaning was completed, Ed offered to take me to eat at King David's Middle Eastern Cuisine in Fayetteville. I absolutely love a particular platter there. And they have a non-sugared green tea with pomegranate juice that we both enjoy thoroughly. Good food, a fairly quick run through TJMaxx next door, and then I dropped off Ed. On my way home, I dropped off the small bag of donations, and went through a car wash! Wow. I am stoked at how the car is going to look once the windows get clean tomorrow. Phew.
I now can look ahead to going to the island to see the wild ponies and lay next to the Atlantic. I completely look forward to kayaking around Assateague Island. We shall have some relaxation, stop and see Lisa and Len and then return with me to go to the real last chemo the next day. Perhaps I shall make it be Wednesday just so I can unpack and settle in. But either way...I will renew, come back and go through the last chemo. I can then celebrate.
I am hugely grateful for so much today. I know how much better it felt to have the support of Ed at the appointment. I was not alone. It made it all feel better. All the work we did on my car was truly we. I am so glad to be on the other side of the deep trunk cleaning. I found that there was a lot of moisture in a cubby adjacent the fuel tank. Everything I stashed in there was rotted. The plastic line running that was supposed to be attached to an end, was not. It is speculation, but there is a chance that overfill fuel got in there. I do recall times I smelled fuel, long ago. That issue is resolved. Oh my, the stuff I had hoarded in that trunk. Yikes.
I am quite tired after a very full day. Two in a row. Tomorrow promises to be a third. Bed time after a vitamin c drink I need to make. I am not on a bummer mindset. I am glad...because I really do not want to look back and regret a bad decision. Instead, I shall insurance myself out of treatment, positive I had three rounds of chemo after the antigen level went normal. And then, I get to recover fully, regrow my hair and live...with joy and love and so much more that I did not have only one short year ago. :)
Good foreshadowing, eh? Well, let me say more before I say more. Today went differently than I had anticipated. I got up and had a phone call and an invite to go to lay at Lake Ontario this morning. After I took a raincheck for Thursday on that notion, I went through my winter clothes and summer clothes and swapped them out. It is a job that happens twice a year here in CNY. It takes time and effort. I have a bin in my closet to store the non seasonal clothing. I got it done and then got ready to leave for my appointment to Dr. Cunningham. Earlier I had scheduled the oil change I had been stressing over for tomorrow morning. I did so online. I realized that I could drop off the car, walk over to yoga, attend yoga practice and return and pick up the car and never have to smell the nasty tire smell I dreaded for it's nausiating aspects. Good call.
As I walked out to leave I received a text asking me if I wanted to be accompanied to my appointment. I answered honestly. Ed met me in front of the building and we arrived on time. It was nice to have him to chat with in the room while we waited for the doctor to come in. When she did, it unfolded in it's own way, like appointments do. It became evident that Dr. Puc's office did not forward all info to Dr. Cunningham. I cannot make any excuses for them on that. It has been weeks since she and I met and recrafted the treatment plan so that my last chemo was my last chemo. Dr. Cunningham made it clear to me that the data for Stage IV Ovarian cancer patients and remission was based on six chemo rounds or eight...but not five. When I brought up the PET scan she seemed mildly irritated. She said she did not care what it showed because it only shows cells groups of a certain size and not smaller. I had realized early on that Dr. Puc was taking a traditional course in treating me. I learned today that Dr. Cunningham's course would have been different. For example, she said she read that the Neulastra had been discontinued due to my complaints of agonizing pain. She said she does not routinely give those shots, only when cell counts indicate a need for them because of the suffering all patients complain of. Oh. Dr. Cunningham was different in her interactions with me today than previously. She looked at Ed and spoke with Ed. She seemed comfortable that he was there. In a sense, it felt like she looked at him as what I refer to myself as in some situations: the voice of reason. She seemed to respect him. I told her that I chose to work with Dr. Puc because I made the decision I wanted Vitamin C infusions. I said that I knew that Dr. Puc is not an ovarian cancer specialist. I credited her with that title and stated that I was there for her expertise. She did not hesitate to say it in more than one way...there is no reason to stop treatment at five chemo infusions. If I want my remission to be long-standing, I should be willing to endure another treatment to give myself the best chance of that. One of the more positive things she asked and responded to was if I knew how quickly the CA 125 number went down after chemo. When I told her that after the second chemo it was down to 7.5, she showed happiness. She said that was an indicator of how well the remission might go. The fact the cancer responded quickly and died off to a normal antigen reading bodes well for my probabilities of what I want to call a cure. And that was just what Dr. Brown at Memorial Sloan-Kettering stated that day in November so long ago. She said that I had a 45-50% chance of being cured. I liked that...as did Lisa, who I'm sure remembers that too. I do not often hear the word cure in relation to ovarian cancer, in fact, Dr. Puc said there is no cure for ovarian cancer. But if remission goes on past 10 years, one might go ahead and use that word "cure." And there are plenty of people who meet that criteria.
So tomorrow, when I go in to meet the nurse, I need to reschedule my sixth and last chemo for the same day it had been, May 21. I need to ask for help now. I know Ed, who has been very helpful to me, is going to be busy with family that entire week. I have some ideas. I will have to reach out more and possibly be alone far more than I want to. But it will really be it and that should help push me past discomfort somewhat. I have no idea whether or not I will have any eyebrows left. When I look in the mirror now, I get surprised. I'm not used to how I look. But, this too shall pass. Amen.
The appointment at Dr. Cunningham involved discussion of the blood tests for ovarian and breast cancer markers, genetic testing. I have to return on June 7 and will discuss the test and give the blood that goes to one lab in Utah, I believe. That will be another thing to wait to know more about. I shall update on that as the info becomes available. I know it matters a lot to my daughter. My gut tells me it will be negative. We shall see.
As Ed and I walked out of the office, we both admitted we thought Dr. Cunningham was going to say you are not done. She was adamant about it. I was compelled to tell her again that it was her that was on the frontline as the surgeon that got me on the path and she seemed gracious about taking that gratitude, but swiftly turned it to: well then lets complete the treatment plan...
So, next on this day that unfolded unpredictably, I mentioned wanting to clean my car and Ed mentioned me coming over and next thing I knew, after stopping at a farmstand with plants, we went to Ed's house and began cleaning my trunk, then interior. It was a project. I know now why I was stressing. There was a LOT in there. All kinds of stuff. We did fill two kitchen trash bags and also created a small give away bag. A box was filled with stuff that belongs in my garage, too. And then the interior got gone through. More purging...then vacuuming. I got hot and tired in the process and took a break in the house to regroup and cool off. And now...the car is ready for one more vacuuming and the interior of the windows to be cleaned. I shall accomplish such tomorrow afternoon, after the infusion. I am very relieved that is done. After the car cleaning was completed, Ed offered to take me to eat at King David's Middle Eastern Cuisine in Fayetteville. I absolutely love a particular platter there. And they have a non-sugared green tea with pomegranate juice that we both enjoy thoroughly. Good food, a fairly quick run through TJMaxx next door, and then I dropped off Ed. On my way home, I dropped off the small bag of donations, and went through a car wash! Wow. I am stoked at how the car is going to look once the windows get clean tomorrow. Phew.
I now can look ahead to going to the island to see the wild ponies and lay next to the Atlantic. I completely look forward to kayaking around Assateague Island. We shall have some relaxation, stop and see Lisa and Len and then return with me to go to the real last chemo the next day. Perhaps I shall make it be Wednesday just so I can unpack and settle in. But either way...I will renew, come back and go through the last chemo. I can then celebrate.
I am hugely grateful for so much today. I know how much better it felt to have the support of Ed at the appointment. I was not alone. It made it all feel better. All the work we did on my car was truly we. I am so glad to be on the other side of the deep trunk cleaning. I found that there was a lot of moisture in a cubby adjacent the fuel tank. Everything I stashed in there was rotted. The plastic line running that was supposed to be attached to an end, was not. It is speculation, but there is a chance that overfill fuel got in there. I do recall times I smelled fuel, long ago. That issue is resolved. Oh my, the stuff I had hoarded in that trunk. Yikes.
I am quite tired after a very full day. Two in a row. Tomorrow promises to be a third. Bed time after a vitamin c drink I need to make. I am not on a bummer mindset. I am glad...because I really do not want to look back and regret a bad decision. Instead, I shall insurance myself out of treatment, positive I had three rounds of chemo after the antigen level went normal. And then, I get to recover fully, regrow my hair and live...with joy and love and so much more that I did not have only one short year ago. :)
Monday, May 6, 2013
Trees budded during chemo week...seems like a good omen!
Well during the past week the trees seemed to all go from stark to budded...and in the case of many, that means in floral colors galore. It is beautiful and alive, green and lush. I have succeeded at mowing the entire property. As I drive around, which I did today, I note the beauty. I have given thought to planting some plants and have not yet decided whether or not I think that wise. There is simply too much up in the air.
Tomorrow it will be a full week since chemo. I still feel nauseous at times. I'm very vulnerable to feeling weak with heat and we have been blessed with it being up around 80 degrees for days. I laid in the sun for a little while today before tackling errands on my own. I am trying to get it together to take a trip next week that I look forward to. And I need to be with more energies than I currently have by then. Right now, just thinking about getting the car ready gets me tired. The trunk is in need of purging...the interior needs to be vacuumed, the exterior cleaned, the oil changed. And I stop there because I know the smell of the waiting room at the Mavis I use for such services stinks of tires and the smell will not sit well with me.
Back to tomorrow and what I must do: go to my appointment with Dr. Cunningham. I will listen to what she has to say. She will tell me her opinion on what should be next. Another chemo or not. It's a pretty big day. I will be alone and that is not as I wish it. I see lots of merit in having someone along during appointments that matter. For support, to listen...not to mention it being the be-all-tell-all appointment it is...those who have a significant other that always comes along to provide you support, you may not be able to even get your mind around some of the emotions I have gone through because I had no choice but to go alone to some significant appointments. To blatantly admit this does not diminish the help people have provided to me nor my appreciation for each bit of help. I'm simply painfully aware that there are gaps that seem very big to me. The truth is, it is complicated. I am confused. I want to honor myself. And I want the missing elements that matter so very much.
I have spent a bit of time thinking about the previous topic. It is essentially aloneness at times when it is best not to be alone. I have grown a lot through cancer to the point where I have asked people to help me. I made specific requests. I did not want to ask for accompaniment tomorrow, though I want it very much. Tomorrow will come and go. I will get through the appointment. I will demonstrate my independence and strength to go alone. But I know from experience that everyone else in the waiting room will be accompanied by someone who cares about them. It is the way it has always been. I need to just embrace the truths that this situation present me with and act accordingly. That is maybe what is bothering me the most.
I am getting tired. It was, in fact, a long day. To rehash, I handled a lot today. I made fresh juice out of apples, celery, carrots, ginger and kale. I then cleaned the machine. I did some internet reading. I laid in the sun, but a call came, and the chair I was on came forward, folded on me and broke. I came in and got a five check bank deposit ready. I loaded all the recyclables into the car along with the bottles with deposits. I went to the bank drive through, then Wegman's where I recycled all I had with me. I then went to TJMaxx to seek things I know I could use on the trip. I did not find any. I did get my mom a Mother's Day present. I came home. I made a salad, heated up some baked macaroni and then gave the dog his second meds of the day. After all of the above, I loaded garbage and brought it to be picked up in Liverpool. This was a day full of accomplishments. In a way, going out and about as I did was foolish. I know that it would be better not to go out in public. I think I did well to accomplish so much and not be amongst many. Wegman's redemption center is it's own room and there was one other person there part of the time. TJMaxx had almost no shoppers when I was there! So done those tasks are, but I am with a big list of more to do. And then the pesky life plans that loom. I believe I am getting closer to taking action. I have to cut myself slack knowing it will take me a while to do all that is necessary. Bravery will have to come into play. I am seriously contemplating getting into a small, older RV with Trooper and heading west...stopping and seeing the places I have wished to see. I know that it will take time to get ready for such an endeavor. The basement, the house...oh my. But on the other side of the work, I can perhaps live out a dream...
If it is a pipe dream, then it shall go up in smoke...if it gets me to truly consider what I would like to manifest...then it is a positive. Perhaps this rambling should be put aside and I should medicate and get to sleep. I have been going to bed early lately (not so tonight) and getting over eight hours sleep. I cannot get off that good track. If I have it in me, I will get the oil changed in the morning and sit outside somewhere it is shady. After Dr. Cunningham, I will know more. Wednesday, I hope to get up and go to yoga for the first time since the one time I went after surgery. It has essentially been since November that I have had a yoga practice. I look forward to how I will feel once reengaged in yoga. Wednesday afternoon I have a vitamin c infusion I will sit through, and if a mini miracle can unfold, I will see Bela Fleck that night. I know the value of live music in my life. It is one of those things that are difficult to explain. It will be a full public event...so that has kept me from committing to myself, but let's just see what Wednesday brings me for energy. Energy with the grandest definitions...
When I began posting these blogs, I had envisioned readers commenting. I have received relatively few comments. When I struggle through the difficult times, one never knows if they might have the pearl that would make it better for me, easier to cope. Insights? Bring em on! Otherwise,tomorrow night I shall post the update on whether or not I shall have to go through a sixth cycle of chemo.
Tomorrow it will be a full week since chemo. I still feel nauseous at times. I'm very vulnerable to feeling weak with heat and we have been blessed with it being up around 80 degrees for days. I laid in the sun for a little while today before tackling errands on my own. I am trying to get it together to take a trip next week that I look forward to. And I need to be with more energies than I currently have by then. Right now, just thinking about getting the car ready gets me tired. The trunk is in need of purging...the interior needs to be vacuumed, the exterior cleaned, the oil changed. And I stop there because I know the smell of the waiting room at the Mavis I use for such services stinks of tires and the smell will not sit well with me.
Back to tomorrow and what I must do: go to my appointment with Dr. Cunningham. I will listen to what she has to say. She will tell me her opinion on what should be next. Another chemo or not. It's a pretty big day. I will be alone and that is not as I wish it. I see lots of merit in having someone along during appointments that matter. For support, to listen...not to mention it being the be-all-tell-all appointment it is...those who have a significant other that always comes along to provide you support, you may not be able to even get your mind around some of the emotions I have gone through because I had no choice but to go alone to some significant appointments. To blatantly admit this does not diminish the help people have provided to me nor my appreciation for each bit of help. I'm simply painfully aware that there are gaps that seem very big to me. The truth is, it is complicated. I am confused. I want to honor myself. And I want the missing elements that matter so very much.
I have spent a bit of time thinking about the previous topic. It is essentially aloneness at times when it is best not to be alone. I have grown a lot through cancer to the point where I have asked people to help me. I made specific requests. I did not want to ask for accompaniment tomorrow, though I want it very much. Tomorrow will come and go. I will get through the appointment. I will demonstrate my independence and strength to go alone. But I know from experience that everyone else in the waiting room will be accompanied by someone who cares about them. It is the way it has always been. I need to just embrace the truths that this situation present me with and act accordingly. That is maybe what is bothering me the most.
I am getting tired. It was, in fact, a long day. To rehash, I handled a lot today. I made fresh juice out of apples, celery, carrots, ginger and kale. I then cleaned the machine. I did some internet reading. I laid in the sun, but a call came, and the chair I was on came forward, folded on me and broke. I came in and got a five check bank deposit ready. I loaded all the recyclables into the car along with the bottles with deposits. I went to the bank drive through, then Wegman's where I recycled all I had with me. I then went to TJMaxx to seek things I know I could use on the trip. I did not find any. I did get my mom a Mother's Day present. I came home. I made a salad, heated up some baked macaroni and then gave the dog his second meds of the day. After all of the above, I loaded garbage and brought it to be picked up in Liverpool. This was a day full of accomplishments. In a way, going out and about as I did was foolish. I know that it would be better not to go out in public. I think I did well to accomplish so much and not be amongst many. Wegman's redemption center is it's own room and there was one other person there part of the time. TJMaxx had almost no shoppers when I was there! So done those tasks are, but I am with a big list of more to do. And then the pesky life plans that loom. I believe I am getting closer to taking action. I have to cut myself slack knowing it will take me a while to do all that is necessary. Bravery will have to come into play. I am seriously contemplating getting into a small, older RV with Trooper and heading west...stopping and seeing the places I have wished to see. I know that it will take time to get ready for such an endeavor. The basement, the house...oh my. But on the other side of the work, I can perhaps live out a dream...
If it is a pipe dream, then it shall go up in smoke...if it gets me to truly consider what I would like to manifest...then it is a positive. Perhaps this rambling should be put aside and I should medicate and get to sleep. I have been going to bed early lately (not so tonight) and getting over eight hours sleep. I cannot get off that good track. If I have it in me, I will get the oil changed in the morning and sit outside somewhere it is shady. After Dr. Cunningham, I will know more. Wednesday, I hope to get up and go to yoga for the first time since the one time I went after surgery. It has essentially been since November that I have had a yoga practice. I look forward to how I will feel once reengaged in yoga. Wednesday afternoon I have a vitamin c infusion I will sit through, and if a mini miracle can unfold, I will see Bela Fleck that night. I know the value of live music in my life. It is one of those things that are difficult to explain. It will be a full public event...so that has kept me from committing to myself, but let's just see what Wednesday brings me for energy. Energy with the grandest definitions...
When I began posting these blogs, I had envisioned readers commenting. I have received relatively few comments. When I struggle through the difficult times, one never knows if they might have the pearl that would make it better for me, easier to cope. Insights? Bring em on! Otherwise,tomorrow night I shall post the update on whether or not I shall have to go through a sixth cycle of chemo.
Friday, May 3, 2013
Still at it...
It has been so long since I have written about my life happs with cancer. Time has been just zipping by...new problems emerge and get handled and ...yeah, life has thankfully been going on!
I had what I hope to be my last chemo infusion on Tuesday, April 30. I found myself in the middle of writing a letter to handle a new crisis of my mom's while I was being infused. I usually allow myself to zonk out on the meds meant for that, but I kept trying to write an important letter whereby I was attempting to get my mom's silky terrier to be able to live in her proximity as opposed to out of the complex and with strangers. It is a long tale, too long and involved to get into, but I can happily report that despite being doped up while writing it, after some edits the letter was sent and did get the outcome hoped for. Another...phew...accomplishment.
It is Friday. I asked for and received continual care from sweet Ed through this afternoon. He handled all aspects of providing for me well. The night of chemo went remarkably well in that I had a good appetite, felt well and had unusual energy. I look back on the evening with smiles. Wednesday we slept in...and made it to the Vitamin C infusion without incident. It too went well. That evening we made a quick jaunt into a local market where there was fresh white fish from the wilds of the Alaskan Pacific. I am looking at adding good quality fish to my diet as a source of protein and thought trying the whitefish to be a good idea. Ed cooked it last night and I ate a small serving, and enjoyed it! I am in the process of learning more about diet, inflammation (a root of many autoimmune diseases) and nutrition, etc. I aim to live a healthy life and know I have more learning to do in that regard.
Today, as was the case yesterday, it really warmed up. After such a long, long cold winter that lingered into spring, it is sure nice to feel warmth! I rode the mower and got the front done today while Ed went and got more fuel. I like enjoying that my yard is looking nice. A simple accomplishment such as today's makes me feel good, although I believe I was leaning toward dehydration after the work was over and I sat and chatted with Barb. Indeed, I was blessed with a visit from Barb after she was out of work. She picked up the groceries I asked for and even helped me to cut basil and create a baked pasta dish out of the leftover pasta of a prior evening. I am now tiring out, ready to drink more fluids and get to bed. I hope to have the energy tomorrow to mow the back section of property. I will not be raking it, just sitting and mowing. I hope to get that handled and feel not behind on the yard. It sure does grow swiftly,and... it is best to not let the grass get too tall!
I will know what Dr. Cunningham believes is in my best interest on Tuesday. I shall report back regarding whether or not this weeks' chemo is the last after our consult! I also intend on getting blood sent off to be genetically tested for BRCA1 or BRCA2. These genetic tests look at susceptibility for breast and ovarian cancers and can provide helpful information to my daughter and granddaughter. I'm ready to gain whatever information is available. I am seeing light at the end of a tunnel...or an end to a trail that I have been on since November. Life is not going to ever be the same...and I have grown leaps and bounds through the processes that have unfolded. Praise be!
I had what I hope to be my last chemo infusion on Tuesday, April 30. I found myself in the middle of writing a letter to handle a new crisis of my mom's while I was being infused. I usually allow myself to zonk out on the meds meant for that, but I kept trying to write an important letter whereby I was attempting to get my mom's silky terrier to be able to live in her proximity as opposed to out of the complex and with strangers. It is a long tale, too long and involved to get into, but I can happily report that despite being doped up while writing it, after some edits the letter was sent and did get the outcome hoped for. Another...phew...accomplishment.
It is Friday. I asked for and received continual care from sweet Ed through this afternoon. He handled all aspects of providing for me well. The night of chemo went remarkably well in that I had a good appetite, felt well and had unusual energy. I look back on the evening with smiles. Wednesday we slept in...and made it to the Vitamin C infusion without incident. It too went well. That evening we made a quick jaunt into a local market where there was fresh white fish from the wilds of the Alaskan Pacific. I am looking at adding good quality fish to my diet as a source of protein and thought trying the whitefish to be a good idea. Ed cooked it last night and I ate a small serving, and enjoyed it! I am in the process of learning more about diet, inflammation (a root of many autoimmune diseases) and nutrition, etc. I aim to live a healthy life and know I have more learning to do in that regard.
Today, as was the case yesterday, it really warmed up. After such a long, long cold winter that lingered into spring, it is sure nice to feel warmth! I rode the mower and got the front done today while Ed went and got more fuel. I like enjoying that my yard is looking nice. A simple accomplishment such as today's makes me feel good, although I believe I was leaning toward dehydration after the work was over and I sat and chatted with Barb. Indeed, I was blessed with a visit from Barb after she was out of work. She picked up the groceries I asked for and even helped me to cut basil and create a baked pasta dish out of the leftover pasta of a prior evening. I am now tiring out, ready to drink more fluids and get to bed. I hope to have the energy tomorrow to mow the back section of property. I will not be raking it, just sitting and mowing. I hope to get that handled and feel not behind on the yard. It sure does grow swiftly,and... it is best to not let the grass get too tall!
I will know what Dr. Cunningham believes is in my best interest on Tuesday. I shall report back regarding whether or not this weeks' chemo is the last after our consult! I also intend on getting blood sent off to be genetically tested for BRCA1 or BRCA2. These genetic tests look at susceptibility for breast and ovarian cancers and can provide helpful information to my daughter and granddaughter. I'm ready to gain whatever information is available. I am seeing light at the end of a tunnel...or an end to a trail that I have been on since November. Life is not going to ever be the same...and I have grown leaps and bounds through the processes that have unfolded. Praise be!
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