It's tricky to expose one's life via blog. I free-write and tell my story as a way to journal, record, and educate. I am going though a time like no other in terms of challenges and others out there may resonate in ways for having been or facing similar straits. I am honest here. If I am struggling emotionally, as the very, very sensitive person I am, it colors what I write. If others actions weigh heavily on me, and I'm already struggling, there's likelihood I will process through writing...and in such a process it seems feelings of others may be hurt. I'm not sure how to handle such matters. Censor...naturally there are always filters on...bu this is true gray area.
I held back on saying exactly how glum I felt during the previous week. When facing my reality, home alone, debilitated and vulnerable, I struggled deeply. I still feel shaken by the feeling that I can be distanced from for any reason when so very shakily recovering from a difficult to be in, difficult to care for situation. An infection, chemo, constipation, nausea and all the associated needs and discomforts...and they couldn't all cease at once with me magically fine when my helper left. ...it became very unhealthy for me to feel deserted.
Emotional pain & ill health, inability...cancer patients feeling such realities need support. Family, friends, loved one's...need to provide comfort & support in a loving manner for best outcomes to be possible. I feel strongly about this.
Today, while infusing with 45 grams of IV Vitamin C, I finished reading the book, "Radical Remission." I learned a lot through the vignettes of other cancer patients who followed their intuition and sought treatment outside the scope of what the traditional western medicine doctors recommended. Amongst the chapters, all of which were engaging and important, was one about emotional health...holding anger, hurt and the damaging consequences to one's health. It resonated with me and I feel certain I know the source of many hurts that I need to fully let go of, as opposed to sort of let go of. It is a process, but some of my hurts go back quite far and I thought they were shed...only to discover, they still have a place in my being that needs to be abandoned. And I am taking a vow to shift or eliminate any remaining toxic relationships. Juxtapositioning these with my rich, deep friendships, it is clear that the contrast in how they feel is polar opposite. My life seems to depend on weeding out sorrow and embracing joy willingly, knowingly, mindfully.
I skipped writing yesterday, a day during which a lot of positive movement happened. I signed on with two real estate agents who listed the house for the price that I had in mind when I began the process. I let a realtor who came and essentially insulted me with his idea of a price to offer the house, based on comps that were not truly comps, influence me negatively. I did a for sale by owner listing, which is how the new realtors in my life came to me. And that story, which I may write another day, unfolded as a true meant-to-be kind of tale. Anyhow, the house is on the market and today I got a call that tomorrow a realtor will be bringing the first folks over to see it! By 3:30 pm, Barb and I will have to have it as together as it can be. And we are running a sale tomorrow, too.
I can honestly say the Vitamin C is helping my energy level tremendously. I am so grateful that I learned of the integrative specialist as I did in 2012. I fully believe I am doing myself right to be infusing twice weekly this time. I worried about funding last time and did half the amount that the University of Kansas recommends to accompany chemo, specifically ovarian cancer chemo. This time, with a recurrence of ovarian cancer with tumors amuk in my peritoneal area, I refuse to sell myself short, despite no monies to cover. I am going to invest in myself with the credit card until the house sells. And now...it is poised to sell!
Today while I was infusing, I was blessed that Ed, who I initiated conversation with two evenings ago, came over and accomplished many things that were important to have done before showing the house. He shampooed the carpet, installed a new ground fault receptacle, installed a closet door slider/keeper set, and brought firewood up. These were true demonstrations of caring for which I am grateful. Yet how I felt this past week lingers as a nagging feeling I'm not something...and the defition of something remains unclear. I am resiliently moving forward now, as I must to succeed in my quest to go into remission, pack, sell and move cross country, while simultaneously handling affairs of my mothers and getting the bailiwick ready to hand off when I go.
I am tired, too tired to think through some of the principles I wish to share. I am excited at the prospect of a potential buyer coming...and know I will be working very hard from morning til the time I drive off to let the lookers see. I am wishing for people to come who will truly love the home and see all of the great aspects. I'd like them to offer me asking price or very close to it, so that I can wrap this chapter up. I have much to accomplish in CA, too. The work is all awaiting...but it is the one step after the other boogie I am doing now....and so, for today, I will close with much more to hit upon in blog soon.
I would like to end with the thought that IV high dose Vitamin C is bringing me back to feeling functional and able. It is rebuilding my body's immunity while fully oxygenating and killing cancer cells. Love it and the fact I have the credit card to place the bill on. Heck, I am earning miles, too.
Tuesday, November 4, 2014
Sunday, November 2, 2014
All Souls Day...struggling and doing, albeit slowly
I keep trying to put on a strong face and believe it is all gonna work out for me. I woke up extremely anxious. I find my situation hard to believe. I miss the person who I thought was there for me. I try to console myself. I feel like giving up. I lit a candle and said a prayer. I admit I am not overly skilled at self-love. It is an obvious need...feeling loved.
Am I confused? Sure. Clear? In some ways, I am. Why now? Why? Why did my support have to drop away from me now? No answers. Just an uneasiness inside. I know yesterday I was trying to be creative in my mind....I'll find someone to help me to do it all...this morning, after laying there with my heart pounding, realizing just how alone I am, I called Trooper. He came and cuddled with me for a half hour. I fed him the love I'm used to dishing into my boyfriend and he gave back. We created the same pool of love that I have cherished in my life. It felt wonderful. He hugged me and I him. Ah. Love. It is vital. Friendships are, too. And I love all of my friends dearly. Friends...
Barb came over and brought me a couple more veggies I wanted and were not available at yesterday's market. She also packed three boxes while I worked in my room. Problem is: I got a bunch taken off shelves and dresser and onto bed and got so tired that I am now resting. I am not nearly what I was before chemo. This is distressing. I am trying to beat the weather...beat the cancer...ready the house for open house, run more sales, keep boxing and I am too tired to get through an hour's work. How will the wood walk itself up the stairs. Should I spend my small reserve on trying to get the carpet clean in the morning? How is it this is gonna work out? I see no answers. I have always had faith it would all work out, but I had the belief that I had a person committed to me in the mix and for days now, he has vanished. I try to push it away, but I was accustomed to talking, interacting, and truthfully, relying on him, particularly now during post-chemo recoup time.
Is it cop-out time? I have had moments throughout the past few days when I feel like coping out on myself. The mountain sometimes seems too high to climb alone, I am not that strong. I went through the last round of cancer determined to demonstrate to anyone watching a can-do faith-filled response. This time, I began feeling can-do, stressed to complete more than felt doable, but secure with the belief my quasi-partner would be alongside me. I am not adjusting well to the change he felt the need to make. I feel discarded when love is what I need.
How to regroup and keep up the fight, even when weak? I do not want to live alone and once in California, I am going to be certain I do not find myself in such a situation. I do try to keep a vision in my mind of the places I long to return to, but also the places I long to see. I truly need to make it to the village in Italy that my mother was born in. Something tells me I will make grand discoveries there. I want to go throughout Italy, to Calabria where my father was born, but Castiglione especially beckons. I want to find new-to-me hot springs in natural settings and compare and contrast them. I want to be in love with someone who wants to be with me as a partner, through great adventures we create, simple moments in natural settings, snuggling and giggling the morning away...I hope keeping dreams alive will help me to get past the current hurdles...to more life, happy fullfilling life once remission occurs. Amen to positive endings....
Am I confused? Sure. Clear? In some ways, I am. Why now? Why? Why did my support have to drop away from me now? No answers. Just an uneasiness inside. I know yesterday I was trying to be creative in my mind....I'll find someone to help me to do it all...this morning, after laying there with my heart pounding, realizing just how alone I am, I called Trooper. He came and cuddled with me for a half hour. I fed him the love I'm used to dishing into my boyfriend and he gave back. We created the same pool of love that I have cherished in my life. It felt wonderful. He hugged me and I him. Ah. Love. It is vital. Friendships are, too. And I love all of my friends dearly. Friends...
Barb came over and brought me a couple more veggies I wanted and were not available at yesterday's market. She also packed three boxes while I worked in my room. Problem is: I got a bunch taken off shelves and dresser and onto bed and got so tired that I am now resting. I am not nearly what I was before chemo. This is distressing. I am trying to beat the weather...beat the cancer...ready the house for open house, run more sales, keep boxing and I am too tired to get through an hour's work. How will the wood walk itself up the stairs. Should I spend my small reserve on trying to get the carpet clean in the morning? How is it this is gonna work out? I see no answers. I have always had faith it would all work out, but I had the belief that I had a person committed to me in the mix and for days now, he has vanished. I try to push it away, but I was accustomed to talking, interacting, and truthfully, relying on him, particularly now during post-chemo recoup time.
Is it cop-out time? I have had moments throughout the past few days when I feel like coping out on myself. The mountain sometimes seems too high to climb alone, I am not that strong. I went through the last round of cancer determined to demonstrate to anyone watching a can-do faith-filled response. This time, I began feeling can-do, stressed to complete more than felt doable, but secure with the belief my quasi-partner would be alongside me. I am not adjusting well to the change he felt the need to make. I feel discarded when love is what I need.
How to regroup and keep up the fight, even when weak? I do not want to live alone and once in California, I am going to be certain I do not find myself in such a situation. I do try to keep a vision in my mind of the places I long to return to, but also the places I long to see. I truly need to make it to the village in Italy that my mother was born in. Something tells me I will make grand discoveries there. I want to go throughout Italy, to Calabria where my father was born, but Castiglione especially beckons. I want to find new-to-me hot springs in natural settings and compare and contrast them. I want to be in love with someone who wants to be with me as a partner, through great adventures we create, simple moments in natural settings, snuggling and giggling the morning away...I hope keeping dreams alive will help me to get past the current hurdles...to more life, happy fullfilling life once remission occurs. Amen to positive endings....
Saturday, November 1, 2014
All Saints Day...
I awoke to a text from previously unnamed dear friend, Barb, who inquired about what I might want from the farmer's market. She knew that I am out of many needed foods. I sent her a list and she has subsequently delivered the couple of things she was able to find me. Super appreciated. Meanwhile, there was a very disturbing email that got my heart racing this morning. I read it from bed and laid there somewhat stunned for a while. More blows. But, I get it. That which does not kill me will make me stronger. And I am! I feel a bit better, though now fighting an even stronger cold on this very chilly day. I want firewood upstairs and a warming fire to be in the fireplace, but that is not in today's realm of possibilities.
What this chapter is confirming is that cancer will push a person to their personal limits, and perhaps the people they have in their life who offer support, too. I always chose to explain childbirth similarly to pregnant women: "In labor, you will reach your own personal threshold of pain"....well, I'm now kind of wondering if combating recurrent cancer isn't about the same. Emotional and physical pain have abounded.
Having the person whom I believed would support me through my treatment abruptly depart has impacted me hard. But...I have now begun to creatively and openly imagine the possibilities as endless as I think about how I will get to California in a timely manner with my belongings in between treatments two and three. I am now very specifically working at forgiving myself for the choices I have made in the last year that I see were not in my best interest. I am gonna be about intentional self-love...gonna take the love I have been willing to pour into others and redirect it. Self-love must include being okay with that wonderful part of myself that has foolishly invested herself somewhat delusionally in the past in matters of the heart. I have worked with a counselor off and on in adult life and know my thematics and their origins. We all carry wounds and I'd like to think we are all self-reflective and live aspiring to learn and grow, although that is very idealistic...another part of me I have to love for it offers me hope when perhaps others would find none.
I feel as I did the day my father died. After the shock, I got at it...I accomplished. Problem is, I've done not much more than sit on the sofa and move a few things off of my dresser and into a box. It took me far too long to feed myself today. I had two calls from dear friends in the DC area today. My best friend has given me vital support on multiple levels and her love permeated me through our call. Right now, I need love more than anything, or so it feels. That is why I am focusing on self-love. So...I feel a strength similar to that I received the day my dad died is coming to me and by tomorrow I may indeed have the physical strength to do the things I now have lined up to accomplish. Amen.
I am very grateful that for five days and nights I had support during a time of true and utter vulnerable need. When the support departed, it became sorely missed. It shocked me to have it disappear. I believed something to be true that was not. Now I must adjust, regroup and step forward. On this All Saints Day, I am going to light a candle and ask for divine guidance. I do not want to ask of others what they are not capable of giving. And I need more help. Inner healing will come of this difficult time. I believe that with all of my being.
Cancer, schmancer you have come into my body
and at times I have felt glum
I am going to turn a leaf from this toil
like those in view turning a brilliant eye-catching color...
only to blow to the ground to rot into next years productive soil.
I am on a path to remission, am going to move in the process, sell my NY home and go handle the CA homestead. The ocean and redwoods beckon. I no longer have any sense of how that is going to happen. I have learned so much so far, it is amazing. And I know where I fell short on making important life changes since my last remission. I have gleaned insights from the book "Radical Remission"and know that all relationships in my life that create toxicity are going to be shifted or purged. I have never felt able to do that, but I feel like that is really changing. So I end giving thanks for the pearls that adversity provides.
What this chapter is confirming is that cancer will push a person to their personal limits, and perhaps the people they have in their life who offer support, too. I always chose to explain childbirth similarly to pregnant women: "In labor, you will reach your own personal threshold of pain"....well, I'm now kind of wondering if combating recurrent cancer isn't about the same. Emotional and physical pain have abounded.
Having the person whom I believed would support me through my treatment abruptly depart has impacted me hard. But...I have now begun to creatively and openly imagine the possibilities as endless as I think about how I will get to California in a timely manner with my belongings in between treatments two and three. I am now very specifically working at forgiving myself for the choices I have made in the last year that I see were not in my best interest. I am gonna be about intentional self-love...gonna take the love I have been willing to pour into others and redirect it. Self-love must include being okay with that wonderful part of myself that has foolishly invested herself somewhat delusionally in the past in matters of the heart. I have worked with a counselor off and on in adult life and know my thematics and their origins. We all carry wounds and I'd like to think we are all self-reflective and live aspiring to learn and grow, although that is very idealistic...another part of me I have to love for it offers me hope when perhaps others would find none.
I feel as I did the day my father died. After the shock, I got at it...I accomplished. Problem is, I've done not much more than sit on the sofa and move a few things off of my dresser and into a box. It took me far too long to feed myself today. I had two calls from dear friends in the DC area today. My best friend has given me vital support on multiple levels and her love permeated me through our call. Right now, I need love more than anything, or so it feels. That is why I am focusing on self-love. So...I feel a strength similar to that I received the day my dad died is coming to me and by tomorrow I may indeed have the physical strength to do the things I now have lined up to accomplish. Amen.
I am very grateful that for five days and nights I had support during a time of true and utter vulnerable need. When the support departed, it became sorely missed. It shocked me to have it disappear. I believed something to be true that was not. Now I must adjust, regroup and step forward. On this All Saints Day, I am going to light a candle and ask for divine guidance. I do not want to ask of others what they are not capable of giving. And I need more help. Inner healing will come of this difficult time. I believe that with all of my being.
Cancer, schmancer you have come into my body
and at times I have felt glum
I am going to turn a leaf from this toil
like those in view turning a brilliant eye-catching color...
only to blow to the ground to rot into next years productive soil.
I am on a path to remission, am going to move in the process, sell my NY home and go handle the CA homestead. The ocean and redwoods beckon. I no longer have any sense of how that is going to happen. I have learned so much so far, it is amazing. And I know where I fell short on making important life changes since my last remission. I have gleaned insights from the book "Radical Remission"and know that all relationships in my life that create toxicity are going to be shifted or purged. I have never felt able to do that, but I feel like that is really changing. So I end giving thanks for the pearls that adversity provides.
Friday, October 31, 2014
Hollow...wean
Just wanted to play with words and feelings....feeling a tad hollow at times and weaning myself from the perception of being supported...
Today I felt better enough to drive myself to the Vitamin C infusion. That is a grand blessing in itself. I now appear to be fighting off a cold because I have been sneezing and my nose is runny. Dang. This makes it impossible for me to take any chances and go into a grocery store, despite being low on many things now that I am up and caring for myself enough to take stock. I'm working on how to resolve this and feel sure I will be able to get someone to go to the store for me in the next day or two. But as for handing out goodies to kids tonight, that just will not be possible as I have nothing here to give.
It's funny all the complexities in life. I buy organic treats for kids and some years I get trick-or-treaters, and other years none. This morning, when I left to go get infused, I found a plastic bag with a printed note and two small treat bags within. The note was from neighbors who have an allergic child. They supplied two bags of treats for their two children and describe how they will appear at the door. Wow. They went through a lot to assure their children would have the experience and be healthy. Gotta appreciate that. It's a fairly short dead-end road and my guess is they will do all their trick-or-treating on this, their own, street. Without anything else to hand out for others, I cannot subject myself to open the door. It all feels kinda strange. Had I felt better sooner, I could have asked someone to pick up some organic candy days ago, but I was in the moment and not at all well....so this is a first. Not gonna turn on the light, the music or open the door. Sigh.
The Vitamin C infusion went well. I watched HGTV and enjoyed the mindlessness of sitting and taking helpful oxygenating vitamin c...known to aid the body in getting over harmful and difficult side effects of chemo, and also to kill ovarian cancer cells in tandum with chemo. I asked my nurse to try to schedule me an appt. with their social worker so that I can try to find out what resources exist in the community to help myself next time. Apparently that will happen next week. I also called my counselor to ask her how to get hooked up with a VA social worker and it was not through her, though she made a good suggestions I will look into on Monday.
Noteworthy to me, in the elevator on my way up to infuse, a women in her 70's began to speak to me. She ended up seeming like she had chemo brain, but told me of her colon cancer and how she had no one to help her. She asked about myself and seemed shocked when I said I also have cancer. I am now wondering how many people go through such a very, very difficult series of treatments and then are trying to care for themselves. I know how it adds to the difficulties to feel a burden or feel helpless or pathetic or feeble. How damn many people are supported by a committed someone or team of someones and how many piece it together marginally, or have not at all the support they need? This question now lingers. Our conversation was moving.
My drive home was one full of reflection and realizations. The trees are rapidly losing leaves and snow is forecast for this weekend. I began to think of all of the illusions I have been under and how when push comes to shove, I have a lot to figure out and implement. I began to imagine myself driving across the country...one week in the not so distant future, and I felt joy. I felt as though no matter what I thought was gonna hopefully happen, I can do this, with strong will and steadfastness. If I have to drive myself and Trooper, I really believe I can! It felt so good to break free from other trails of thought and ideas and to feel my own power. This too shall pass. I have five treatments to go and then I will be mending and moving into a new phase of life. An exciting new phase. Because I know I am going to rebuild my life into what I really want it to be.
Next time I write, maybe I should investigate the correlation between feeling unable to care for ones self and losing optimism. This is a big concept when you go back to how many cancer patients are not able to meet their own needs and how important positivity is to healing. Wow. Big. If you, the reader, are someone who is beginning the road to remission, try now to get your ducks in a row. Get a support team together if you are not in a truly committed relationship or have family that understand the meaning of the word. Be prepared for some friends to tell you they will be there, only to become conspicuously absent. It's tricky. If you are a person who knows someone who has cancer and is struggling with anything that you have the ability to help he or she with, help! Be generous. You are being morally and spiritually tested if you are in that situation. Don't be the kind of person who donates only if there is a tax write-off associated. Show you care in all the ways you can, for the difference you will make will go far beyond that which will be obvious. When a friend of mine phoned a few months ago and told me her sister had cancer, she asked me what she could do to help, I said to her,"If she is hurting financially, help her that way. Because when you are unable to earn what you need to survive, that stress adds its own dimension to the cancer."
I write this blog and wonder, who, if anyone, reads it. I have a friend who tells me she does, but I wonder who stumbles upon it, who begins to read, who fully reads...and does this help anyone but myself therapeutically? If you are a reader and wouldn't mind, please comment.
Today I felt better enough to drive myself to the Vitamin C infusion. That is a grand blessing in itself. I now appear to be fighting off a cold because I have been sneezing and my nose is runny. Dang. This makes it impossible for me to take any chances and go into a grocery store, despite being low on many things now that I am up and caring for myself enough to take stock. I'm working on how to resolve this and feel sure I will be able to get someone to go to the store for me in the next day or two. But as for handing out goodies to kids tonight, that just will not be possible as I have nothing here to give.
It's funny all the complexities in life. I buy organic treats for kids and some years I get trick-or-treaters, and other years none. This morning, when I left to go get infused, I found a plastic bag with a printed note and two small treat bags within. The note was from neighbors who have an allergic child. They supplied two bags of treats for their two children and describe how they will appear at the door. Wow. They went through a lot to assure their children would have the experience and be healthy. Gotta appreciate that. It's a fairly short dead-end road and my guess is they will do all their trick-or-treating on this, their own, street. Without anything else to hand out for others, I cannot subject myself to open the door. It all feels kinda strange. Had I felt better sooner, I could have asked someone to pick up some organic candy days ago, but I was in the moment and not at all well....so this is a first. Not gonna turn on the light, the music or open the door. Sigh.
The Vitamin C infusion went well. I watched HGTV and enjoyed the mindlessness of sitting and taking helpful oxygenating vitamin c...known to aid the body in getting over harmful and difficult side effects of chemo, and also to kill ovarian cancer cells in tandum with chemo. I asked my nurse to try to schedule me an appt. with their social worker so that I can try to find out what resources exist in the community to help myself next time. Apparently that will happen next week. I also called my counselor to ask her how to get hooked up with a VA social worker and it was not through her, though she made a good suggestions I will look into on Monday.
Noteworthy to me, in the elevator on my way up to infuse, a women in her 70's began to speak to me. She ended up seeming like she had chemo brain, but told me of her colon cancer and how she had no one to help her. She asked about myself and seemed shocked when I said I also have cancer. I am now wondering how many people go through such a very, very difficult series of treatments and then are trying to care for themselves. I know how it adds to the difficulties to feel a burden or feel helpless or pathetic or feeble. How damn many people are supported by a committed someone or team of someones and how many piece it together marginally, or have not at all the support they need? This question now lingers. Our conversation was moving.
My drive home was one full of reflection and realizations. The trees are rapidly losing leaves and snow is forecast for this weekend. I began to think of all of the illusions I have been under and how when push comes to shove, I have a lot to figure out and implement. I began to imagine myself driving across the country...one week in the not so distant future, and I felt joy. I felt as though no matter what I thought was gonna hopefully happen, I can do this, with strong will and steadfastness. If I have to drive myself and Trooper, I really believe I can! It felt so good to break free from other trails of thought and ideas and to feel my own power. This too shall pass. I have five treatments to go and then I will be mending and moving into a new phase of life. An exciting new phase. Because I know I am going to rebuild my life into what I really want it to be.
Next time I write, maybe I should investigate the correlation between feeling unable to care for ones self and losing optimism. This is a big concept when you go back to how many cancer patients are not able to meet their own needs and how important positivity is to healing. Wow. Big. If you, the reader, are someone who is beginning the road to remission, try now to get your ducks in a row. Get a support team together if you are not in a truly committed relationship or have family that understand the meaning of the word. Be prepared for some friends to tell you they will be there, only to become conspicuously absent. It's tricky. If you are a person who knows someone who has cancer and is struggling with anything that you have the ability to help he or she with, help! Be generous. You are being morally and spiritually tested if you are in that situation. Don't be the kind of person who donates only if there is a tax write-off associated. Show you care in all the ways you can, for the difference you will make will go far beyond that which will be obvious. When a friend of mine phoned a few months ago and told me her sister had cancer, she asked me what she could do to help, I said to her,"If she is hurting financially, help her that way. Because when you are unable to earn what you need to survive, that stress adds its own dimension to the cancer."
I write this blog and wonder, who, if anyone, reads it. I have a friend who tells me she does, but I wonder who stumbles upon it, who begins to read, who fully reads...and does this help anyone but myself therapeutically? If you are a reader and wouldn't mind, please comment.
Thursday, October 30, 2014
BIG SIGH...TWO, Today
Chin up sister, rah rah...sure you can...(I to I)
I've been wanting to write for a while. Like maybe someone will read it and learn and grow or somehow something good will come from going through the process of writing. Where to begin to catch up on what is now fully round 2 of ovarian cancer in my body and life?
Well, after postponing treatment for almost two months so that I could pack and purge and sell, I began experiencing pain. I called the oncology dept and asked for another cancer antigen lab to be ordered and found out that the number was up significantly. Despite doing my best and working as hard as I could to get myself propelled back to CA while shifting my diet radically...cancer grew in me. I no longer recall nor have the energy to cross reference the dates, but sometime not long ago, I learned the CA 125 was up to 168 and I also had pain. I scheduled chemo to begin last Friday, October 24.
The weekend before was spent "busting it out," as I like to say about any time a grand surge of energy is spent accomplishing toward a goal, and a dear cousin flew in from FL to help me to pack and purge and stage. The Friday she arrived, another dear cousin and a dear friend showed up too...and wow, a ton got done! It felt great! There were many other times during the previous two months that tons of work occurred...and also many days spent in the hospital with my elderly mother's health issues. A time of challenge? EXTRAORDINAIRE!
So...lot's of achievement, with rooms staged and a Zillow listing with photos online, then on Thursday, October 23, I wiped blood from vaginal area...and made calls. My surgeon, the true gynecological cancer specialist was the first call. Her office told me they are not my chemo provider and to call the oncologist. They also said if you have a urinary tract infection you will not be starting chemo tomorrow so you need tests to happen and if you can't get your oncologist to do so, call us back. Call two, oncology dept and I tell the telephone respondent of my circumstances. She tells me to come in tomorrow as scheduled for an appt before chemo. I agree, but tell her what the other office conveyed to me and I ask if I will get a call back because I think we need labs. After two hours of hearing nothing, I called my general practitioner, who's nurse social worker has never let me down. I discover, per her voicemail message, that she is gone for the week. So, I leave a message with the familiar-to-me receptionist. I heard back relatively shortly and was ultimately asked to come in and get labs. Mission accomplished. And I got a ride, too. The whole trip with labs took less than an hour. Hooray.
Friday morning I got up and went in for the appt with oncologist. Now, granted, this oncologist is new to me and so far I had decided to not go right into chemo with aggressive ovarian cancer. We do not have the benefit of a relationship, so she likely has an attitude about me and how I make choices. And maybe one day I will write more about putting the treatment off and the dilemmas and difficulties. So damn many. Anyhow, the oncologist saw me, listened and stated the labs came back ok. After the appt and my signing release forms, I walked to the infusion room. Gotta love how that sounds....almost intriguing.
I entered the infusion room and almost immediately heard a voice ask, "Aren't you from Galeville?"
I turned and said,"Yes" and she continued, "You lived on Buckley and I on Ferncliff." Well that got my attention and I looked her in the eyes and WOW! It was my old Ornamental Horticulture high school colleague, Madeline! I had not seen her since 1975. And so it was my first infusion at the VAMC infusion lab had me blessed with the guidance of a chemo nurse with whom I had familiarity. I do so love serendipity and blessings...and realized that I was in the midst of more of those goodies. Cool.
Long, long stories short: the oncologist asked me to undergo another ct scan with contrast to check the growth of the cancer since it had been almost two months since my last scan. I agreed. There was a lot of time spent waiting...for my chemo to be mixed. But during that time, discussion about when to get the scan. It takes drinking a contrast blend and waiting an hour. Madeline and I discussed possibilities and she called the radiology dept. By almost noon, I was hungry and determined to not let myself get weak...I asked if we might be able to get it done before chemo. After calling and arranging this, Madeline left. And my cell phone rang. It was my primary care physician. She just received the lab results for urine and they confirm a bacterial infection. Hmmm, I thought the oncologist told me the labs showed nothing. Well, she did not order labs (nor return the previous day's call) and thus did not take into account the urine lab (which to me seems like it would have been an obvious lab to order given blood in urine). I told my doctor that I was sitting waiting for my chemo to be mixed and she asked to speak to a nurse.
Apparently that provoked a call to the oncologist and a subsequent investigation into what to do. Meanwhile, Madeline arrived with the contrast drink and I gulped it down. She then got an iv in me for the test. One hour later we went to the radiology dept. and got the ct scan done. I went back to the infusion room and learned that my chemo was coming. I inquired about an antibiotic and was told my oncologist called (an) infectious disease center (?) and was told I did not need antibiotics. At that point....I'm putting it into the hands of fate...that's what I think my internal dialogue was saying. Chemo was administered after the pre chemo meds...right into the trusty port. I slept a lot. Good news: the potential rejection of the chemo drugs that sometimes occurs when a person begins a second course of such treatment (Paxiltaxil and Carboplatin) did not occur. Go body go....we have the goods to kill off ovarian cancer in us now...and more sleep. I only woke up to pee a couple of times.
At about 5 pm... and yes it was a particularly peculiar and long day, Madeline got a call and got off the phone to tell me the scan results were available and the oncologist told her to print them for me. No dialogue with the oncologist and I....but once printed, I read the report. All tumors were about double or better in size. And there were many more in the peritoneal area. So much for starving the cancer. It lived and grew. Big fucking sigh. Ok, I guess I am doing the right thing right now...says I to I.
At about 6 pm I was finally ready to exit. Ed, who made a commitment to care for me during chemo recovery, returned to pick me up. We went back to my house and he made me some dinner, which I ate. I also began taking in bags of vaporized medical m. That is my greatly preferred method of staving off nausea. I drank plenty and went to bed and sleep. I decided that I would post and open my garage and basement sale, the sole source of any and all income right now. I stated a 11:30 am opening time on craigslist before heading to bed.
So the next morning, after sleeping in, I got up, had bags, and ate a light breakfast of a smoothie and people began to arrive. I went downstairs to assist and price and before I knew it, it was about 3 pm. I did not hydrate well Saturday and that was a grave error. Ed wanted to run errands and after another friend arrived, he left. I experienced stomach cramps and although I forgot to mention it earlier in this post, being constipated was another strike against me as I began chemo. I did inform the oncologist of that too. We wondered if tumors were causing the problem and that had been another reason to rescan. At any rate, Saturday evening, I felt constipated, but ate two bowls of a delicious fresh pumpkin and unsweetened almond milk soup and some brown rice and stir-fried veggies. We watched the anticipated World Series game with me attempting to relieve my distress throughout the evening.
Sunday morning I awoke feeling lousy. I believe it began during the night Saturday. I was nauseous and felt full up with distress of constipation, to be referred to as "doc" for the rest of the post. I refused breakfast, tried drinking ginger tea, bags, bags, attempt to relieve "doc"...a dizzy spell in the bathroom and I called for Ed. I told him I saw fractal flowers, a precursor to passing out for me historically. He asked me to stand and wash my hands and the next thing I knew, I was laying on the bathroom floor. I called for him. He was off getting his telephone. He got the phone no and called the VA helpline. It was the weekend, so there was no one available in oncology! He got a nurse on a hotline in the Bronx. When he told her I passed out, she suggested he get me to bed. She also suggested Milk of Magnesia. I spoke to her and told her I passed out. There was a language barrier. At any rate, thereafter, I went and laid down and a friend phoned me. I asked her if she could swing over, as she lives about 5 minutes away. She did. Ed went to get the Milk of Magnesia. More discussion about best product of "doc" and another call to the hotline. The second nurse, learning of my passing out, suggested I go to the ER. We discussed that. Meanwhile, I got nauseous. I threw up. Twice. I got nervous. I recall it being drilled into me by my very good chemo nurse last year: do not let yourself begin to throw up. It is a bad road to get on. Damn. A bit later, a different friend came over after texting. She cut up ginger and began giving me hot ginger water. The day dragged on full of discomfort and illness. I was in bed most of the day. I was so ill, I was unable to watch the World Series. That says a lot. I had been enjoying watching the Giants throughout the playoffs and into the Series.
Monday, I awoke still having much "doc". I had taken stool softeners, Milk of Magnesia and nothing was working. Ed took me to the ER. It took hours...lab work, waiting...decisions....waiting...I ended up nauseous and vomited twice. Eventually an enema was given and almost 45 minutes later a bm. Labs revealed my white blood cell count was already off from chemo. I was given an iv of hydration and one of an anti nausea. I went home tired and ill feeling. Wow...never had all this difficulty during last years' rounds of chemo. Damn.
Tuesday went somewhat better. Somewhat. I continued to use bags for nausea and to try to get better hydrated. I recall little...was in bed a lot, up some...felt not good. Then evening came around and time for the World Series. This time I could watch. While watching, Ed got a call. His mother fell and was being ambulanced to the ER. Oh no! So sad and scary. He left to go to the hospital and returned around 4 am. Trooper was really freaking out, banging himself into my closet door. I began experiencing pain in my bladder area. Damn it. I felt really, really bad by the time he got back.
Wednesday morning, Ed called hospital to find they were about to operate on his mom to do a partial hip replacement, despite previous information that it would be much later in the day. That is the last I have seen of Ed. I had called and asked a friend who assured me she would come to my aid to please come in the afternoon and evening, knowing he would be gone. Meanwhile, another dear friend texted from a store and asked if I needed anything. I wanted cranberry juice and told her. She came with my juice, made me a smoothie, beverages, and allowed me to shower knowing someone was here in case. She also took me to pick up the prescription for antibiotics that my general practitioner determined was, in fact, needed. Since that point in time, yesterday afternoon, I have been on my own.The friend who Ed and I had both asked to come support me did not come. Sigh. We all have lives to live.
Today I still felt illish. Not as bad, granted, better. After getting up and feeding the dog, I went back to bed. I had a difficult call and then went into a trance like place while laying down. I let go of all of my problems....I let go and let God. I began to see the autumn foliage slowly falling to the ground and have no idea how long I laid there like that. I finally had the umph to get up and make myself some food and hydrate, but it was already after 1 pm by then. Eventually, I made dinner and feel like I am getting stronger. But is absolutely sucks to be in need. I am used to doing.
The point I am at is one of realizing how vulnerable and how honestly sad it feels to be in need and not have the support necessary. I am trying with all I have to move my life forward. I am broke. That alone is so difficult it is hard to discuss. I know once I sell this home I will have money. Meanwhile, though, there are serious financial pressures on top of all of the others. For the past two months, instead of any other choices I could have made, I chose to put all my efforts into doing the hard work that I admittedly put off too long toward selling the house and getting out of CNY. I don't want to think it is too little too late. And I believe I am going to pull through this series of chemo into remission again. At that point, I will decide what is next. I envision doing some bucket list things. Traveling...and being around folks who love me...spending time with my four-year-old granddaughter...feeling worth it...being around like-minds and kind, generous souls...going to the big ol trees, the ocean, my special places along the beautiful Northcoast...these are the thoughts that propel me...'cept for when I'm in the doldrums. As I say goodnight to another day, I hope that tomorrow will make me stronger and more independent...able to care for my own needs with greater ease. Amen.
Having recurrent stage IV ovarian cancer is a challenge extraordinaire. The chemo is going far different than the first time. It has been very difficult and it is almost a week since treatment. I had hoped it would be similar to last time; we rely on experiences to gauge what is ahead. I was wrong. It has been far more difficult. I have high hopes that by the time I get the second round, in less than two weeks, I will be doing better in all ways. I hope to find an agency that can provide me some help. I am going to reach out and try to get a social worker to help me to learn of programs. I do not want to feel a burden and hate the feeling of being ditched and want to avoid such feelings. Meanwhile, tomorrow I will go for my first Vitamin C infusion. I truly believe it is going to help my body endure the chemo. I will get infused twice a week. More about other hopefuls to come.
I've been wanting to write for a while. Like maybe someone will read it and learn and grow or somehow something good will come from going through the process of writing. Where to begin to catch up on what is now fully round 2 of ovarian cancer in my body and life?
Well, after postponing treatment for almost two months so that I could pack and purge and sell, I began experiencing pain. I called the oncology dept and asked for another cancer antigen lab to be ordered and found out that the number was up significantly. Despite doing my best and working as hard as I could to get myself propelled back to CA while shifting my diet radically...cancer grew in me. I no longer recall nor have the energy to cross reference the dates, but sometime not long ago, I learned the CA 125 was up to 168 and I also had pain. I scheduled chemo to begin last Friday, October 24.
The weekend before was spent "busting it out," as I like to say about any time a grand surge of energy is spent accomplishing toward a goal, and a dear cousin flew in from FL to help me to pack and purge and stage. The Friday she arrived, another dear cousin and a dear friend showed up too...and wow, a ton got done! It felt great! There were many other times during the previous two months that tons of work occurred...and also many days spent in the hospital with my elderly mother's health issues. A time of challenge? EXTRAORDINAIRE!
So...lot's of achievement, with rooms staged and a Zillow listing with photos online, then on Thursday, October 23, I wiped blood from vaginal area...and made calls. My surgeon, the true gynecological cancer specialist was the first call. Her office told me they are not my chemo provider and to call the oncologist. They also said if you have a urinary tract infection you will not be starting chemo tomorrow so you need tests to happen and if you can't get your oncologist to do so, call us back. Call two, oncology dept and I tell the telephone respondent of my circumstances. She tells me to come in tomorrow as scheduled for an appt before chemo. I agree, but tell her what the other office conveyed to me and I ask if I will get a call back because I think we need labs. After two hours of hearing nothing, I called my general practitioner, who's nurse social worker has never let me down. I discover, per her voicemail message, that she is gone for the week. So, I leave a message with the familiar-to-me receptionist. I heard back relatively shortly and was ultimately asked to come in and get labs. Mission accomplished. And I got a ride, too. The whole trip with labs took less than an hour. Hooray.
Friday morning I got up and went in for the appt with oncologist. Now, granted, this oncologist is new to me and so far I had decided to not go right into chemo with aggressive ovarian cancer. We do not have the benefit of a relationship, so she likely has an attitude about me and how I make choices. And maybe one day I will write more about putting the treatment off and the dilemmas and difficulties. So damn many. Anyhow, the oncologist saw me, listened and stated the labs came back ok. After the appt and my signing release forms, I walked to the infusion room. Gotta love how that sounds....almost intriguing.
I entered the infusion room and almost immediately heard a voice ask, "Aren't you from Galeville?"
I turned and said,"Yes" and she continued, "You lived on Buckley and I on Ferncliff." Well that got my attention and I looked her in the eyes and WOW! It was my old Ornamental Horticulture high school colleague, Madeline! I had not seen her since 1975. And so it was my first infusion at the VAMC infusion lab had me blessed with the guidance of a chemo nurse with whom I had familiarity. I do so love serendipity and blessings...and realized that I was in the midst of more of those goodies. Cool.
Long, long stories short: the oncologist asked me to undergo another ct scan with contrast to check the growth of the cancer since it had been almost two months since my last scan. I agreed. There was a lot of time spent waiting...for my chemo to be mixed. But during that time, discussion about when to get the scan. It takes drinking a contrast blend and waiting an hour. Madeline and I discussed possibilities and she called the radiology dept. By almost noon, I was hungry and determined to not let myself get weak...I asked if we might be able to get it done before chemo. After calling and arranging this, Madeline left. And my cell phone rang. It was my primary care physician. She just received the lab results for urine and they confirm a bacterial infection. Hmmm, I thought the oncologist told me the labs showed nothing. Well, she did not order labs (nor return the previous day's call) and thus did not take into account the urine lab (which to me seems like it would have been an obvious lab to order given blood in urine). I told my doctor that I was sitting waiting for my chemo to be mixed and she asked to speak to a nurse.
Apparently that provoked a call to the oncologist and a subsequent investigation into what to do. Meanwhile, Madeline arrived with the contrast drink and I gulped it down. She then got an iv in me for the test. One hour later we went to the radiology dept. and got the ct scan done. I went back to the infusion room and learned that my chemo was coming. I inquired about an antibiotic and was told my oncologist called (an) infectious disease center (?) and was told I did not need antibiotics. At that point....I'm putting it into the hands of fate...that's what I think my internal dialogue was saying. Chemo was administered after the pre chemo meds...right into the trusty port. I slept a lot. Good news: the potential rejection of the chemo drugs that sometimes occurs when a person begins a second course of such treatment (Paxiltaxil and Carboplatin) did not occur. Go body go....we have the goods to kill off ovarian cancer in us now...and more sleep. I only woke up to pee a couple of times.
At about 5 pm... and yes it was a particularly peculiar and long day, Madeline got a call and got off the phone to tell me the scan results were available and the oncologist told her to print them for me. No dialogue with the oncologist and I....but once printed, I read the report. All tumors were about double or better in size. And there were many more in the peritoneal area. So much for starving the cancer. It lived and grew. Big fucking sigh. Ok, I guess I am doing the right thing right now...says I to I.
At about 6 pm I was finally ready to exit. Ed, who made a commitment to care for me during chemo recovery, returned to pick me up. We went back to my house and he made me some dinner, which I ate. I also began taking in bags of vaporized medical m. That is my greatly preferred method of staving off nausea. I drank plenty and went to bed and sleep. I decided that I would post and open my garage and basement sale, the sole source of any and all income right now. I stated a 11:30 am opening time on craigslist before heading to bed.
So the next morning, after sleeping in, I got up, had bags, and ate a light breakfast of a smoothie and people began to arrive. I went downstairs to assist and price and before I knew it, it was about 3 pm. I did not hydrate well Saturday and that was a grave error. Ed wanted to run errands and after another friend arrived, he left. I experienced stomach cramps and although I forgot to mention it earlier in this post, being constipated was another strike against me as I began chemo. I did inform the oncologist of that too. We wondered if tumors were causing the problem and that had been another reason to rescan. At any rate, Saturday evening, I felt constipated, but ate two bowls of a delicious fresh pumpkin and unsweetened almond milk soup and some brown rice and stir-fried veggies. We watched the anticipated World Series game with me attempting to relieve my distress throughout the evening.
Sunday morning I awoke feeling lousy. I believe it began during the night Saturday. I was nauseous and felt full up with distress of constipation, to be referred to as "doc" for the rest of the post. I refused breakfast, tried drinking ginger tea, bags, bags, attempt to relieve "doc"...a dizzy spell in the bathroom and I called for Ed. I told him I saw fractal flowers, a precursor to passing out for me historically. He asked me to stand and wash my hands and the next thing I knew, I was laying on the bathroom floor. I called for him. He was off getting his telephone. He got the phone no and called the VA helpline. It was the weekend, so there was no one available in oncology! He got a nurse on a hotline in the Bronx. When he told her I passed out, she suggested he get me to bed. She also suggested Milk of Magnesia. I spoke to her and told her I passed out. There was a language barrier. At any rate, thereafter, I went and laid down and a friend phoned me. I asked her if she could swing over, as she lives about 5 minutes away. She did. Ed went to get the Milk of Magnesia. More discussion about best product of "doc" and another call to the hotline. The second nurse, learning of my passing out, suggested I go to the ER. We discussed that. Meanwhile, I got nauseous. I threw up. Twice. I got nervous. I recall it being drilled into me by my very good chemo nurse last year: do not let yourself begin to throw up. It is a bad road to get on. Damn. A bit later, a different friend came over after texting. She cut up ginger and began giving me hot ginger water. The day dragged on full of discomfort and illness. I was in bed most of the day. I was so ill, I was unable to watch the World Series. That says a lot. I had been enjoying watching the Giants throughout the playoffs and into the Series.
Monday, I awoke still having much "doc". I had taken stool softeners, Milk of Magnesia and nothing was working. Ed took me to the ER. It took hours...lab work, waiting...decisions....waiting...I ended up nauseous and vomited twice. Eventually an enema was given and almost 45 minutes later a bm. Labs revealed my white blood cell count was already off from chemo. I was given an iv of hydration and one of an anti nausea. I went home tired and ill feeling. Wow...never had all this difficulty during last years' rounds of chemo. Damn.
Tuesday went somewhat better. Somewhat. I continued to use bags for nausea and to try to get better hydrated. I recall little...was in bed a lot, up some...felt not good. Then evening came around and time for the World Series. This time I could watch. While watching, Ed got a call. His mother fell and was being ambulanced to the ER. Oh no! So sad and scary. He left to go to the hospital and returned around 4 am. Trooper was really freaking out, banging himself into my closet door. I began experiencing pain in my bladder area. Damn it. I felt really, really bad by the time he got back.
Wednesday morning, Ed called hospital to find they were about to operate on his mom to do a partial hip replacement, despite previous information that it would be much later in the day. That is the last I have seen of Ed. I had called and asked a friend who assured me she would come to my aid to please come in the afternoon and evening, knowing he would be gone. Meanwhile, another dear friend texted from a store and asked if I needed anything. I wanted cranberry juice and told her. She came with my juice, made me a smoothie, beverages, and allowed me to shower knowing someone was here in case. She also took me to pick up the prescription for antibiotics that my general practitioner determined was, in fact, needed. Since that point in time, yesterday afternoon, I have been on my own.The friend who Ed and I had both asked to come support me did not come. Sigh. We all have lives to live.
Today I still felt illish. Not as bad, granted, better. After getting up and feeding the dog, I went back to bed. I had a difficult call and then went into a trance like place while laying down. I let go of all of my problems....I let go and let God. I began to see the autumn foliage slowly falling to the ground and have no idea how long I laid there like that. I finally had the umph to get up and make myself some food and hydrate, but it was already after 1 pm by then. Eventually, I made dinner and feel like I am getting stronger. But is absolutely sucks to be in need. I am used to doing.
The point I am at is one of realizing how vulnerable and how honestly sad it feels to be in need and not have the support necessary. I am trying with all I have to move my life forward. I am broke. That alone is so difficult it is hard to discuss. I know once I sell this home I will have money. Meanwhile, though, there are serious financial pressures on top of all of the others. For the past two months, instead of any other choices I could have made, I chose to put all my efforts into doing the hard work that I admittedly put off too long toward selling the house and getting out of CNY. I don't want to think it is too little too late. And I believe I am going to pull through this series of chemo into remission again. At that point, I will decide what is next. I envision doing some bucket list things. Traveling...and being around folks who love me...spending time with my four-year-old granddaughter...feeling worth it...being around like-minds and kind, generous souls...going to the big ol trees, the ocean, my special places along the beautiful Northcoast...these are the thoughts that propel me...'cept for when I'm in the doldrums. As I say goodnight to another day, I hope that tomorrow will make me stronger and more independent...able to care for my own needs with greater ease. Amen.
Having recurrent stage IV ovarian cancer is a challenge extraordinaire. The chemo is going far different than the first time. It has been very difficult and it is almost a week since treatment. I had hoped it would be similar to last time; we rely on experiences to gauge what is ahead. I was wrong. It has been far more difficult. I have high hopes that by the time I get the second round, in less than two weeks, I will be doing better in all ways. I hope to find an agency that can provide me some help. I am going to reach out and try to get a social worker to help me to learn of programs. I do not want to feel a burden and hate the feeling of being ditched and want to avoid such feelings. Meanwhile, tomorrow I will go for my first Vitamin C infusion. I truly believe it is going to help my body endure the chemo. I will get infused twice a week. More about other hopefuls to come.
Monday, September 29, 2014
Big Giant Sigh...and chin up
I have put off writing this for a long while. I had to refer to this blog to recall what it feels like to endure chemo because my mind conveniently glosses over those details. It's important to me to know though, because as I pack my belongings, make decisions about what to take and what to sell or give away and when to begin chemo, the details of what to expect matter.
I knew there was a correlation between my steadily rising CA 125 and the stress from knowing the long-standing cold symptoms were caused by exposure to mold and that the respiratory issues I still had were the result of taking a job that was not only one in which I had to learn everything on my own in order to enact the responsibilities responsibly, but it was one in which I was unappreciated and shunned for going above the boss to get the painting that was causing me further health issues to stop during work hours. The sum total of the job as an error in my life will never be fully equated. It just is. My CA 125 began to rise just after the mold was unearthed and exposed behind the wallpaper that had hid it, despite its place in the air I breathed every day I went to work and stood or sat nearby the door and adjacent what turned out to be a very moldy wall area. When the remediation was completed and I returned to the workplace, it was to be exposed to paint fumes that proved to be too much for my system. My CA 125 rose every month from the time the mold was exposed and the chemical spray sprayed quite near where I was stationed that fateful morning in early March 2014. And it rose and rose...
So, fast forward this tale to August 2014 when the antigen number went above the normal range high end of 30. By early September it was 103.5 and it is currently 113.7. My ct scan with contrast reveals I have tumors growing in my spleen, liver and other areas in the peritoneal area. The gyn oncologist and surgeon Dr. Cunningham told me that it is inoperable. She believes it will again respond to the two chemo agents used before and that I will again go into remission. However, she told me that the first remission in ovarian cancer is generally the longest.
When I said I had more to do in this life and that we had planned to go to Italy in the fall, she suggested I go ahead and book that trip. I just didn't feel I could pack and move back to the northcoast of CA and go to Italy, and sell my house in order to have any money to survive with or pay my health costs, etc. So, no trip to Italy on the horizon right now and I have begun the ever-so-daunting task of packing and purging.
Tomorrow morning the local realtor will be coming over to look at the house. I have worked as hard as is possible to repair whatever needed repairing and to revamp all that it was in my power to revamp. The place looks as good as it ever has since I bought it 8 years ago. And I have had to face the fact I love the home, enjoy many aspects of living in Baldwinsville, NY, and will likely miss the house and property and many friends. But I cannot float the taxes and such without an income. Add to that the fact I miss my granddaughter and realize that I deep down desire the chance to be around her. I must believe that her mother will allow us that, no matter what in order to propel myself forward and go through the difficult and tedious tasks ahead.
But this time of challenge goes well beyond the simple (ha!) tasks of packing, selling, and arranging logistics of getting my belongings back to CA because my 93+ year old mother is now failing to eat or drink enough and is experiencing geriatric failure to thrive. She has been in and out of the ER due to dehydration and falls three times in the past week. And that all took time and energy that was already earmarked for moving forward.
I have met my new oncologist and she and I agreed on last Friday as a start date for chemo. She knows I will be moving back to CA while doing chemo. But I had to call and cancel last Friday due to time spent on mom's life and the fact I can add up the facts: if I begin chemo and get weak and tired, as my blog seems to indicate is what happened last time, I will not have the umph to get all I need to do done. Damn it! It has become such a time of challenge that I do not know quite how to handle it other than to keep my chin up and work until tired daily. I just got done raking the lawn, trimming greenery from steps to the front, mopping the kitchen floor and vacuuming the house.
The realtors will come tomorrow and will give me their assessment of my homes' value at 9 am. After they leave, I will drive to the assisted living place my mother currently resides at the request of the case manager, and we shall discuss my mother. There is no doubt they will be telling me that she is aging and poor-healthing herself out of there. So, am I to move her - again - before my own move and will that be before or after my chemo? I dare not schedule it until the meeting is over.
Yeah, this is a time like no other. I have recurrent ovarian cancer, stage IV, am trying to get it together to do a cross country move after beginning chemo, and while doing what is possible to see my mother through the end of her life. Sigh. This is a very sighable situation.
I will write more after tomorrow's meetings. I believe if anyone can achieve the goals I have, which of course include overcoming this cancer and living healthily for many years, it is me. Amen.
I knew there was a correlation between my steadily rising CA 125 and the stress from knowing the long-standing cold symptoms were caused by exposure to mold and that the respiratory issues I still had were the result of taking a job that was not only one in which I had to learn everything on my own in order to enact the responsibilities responsibly, but it was one in which I was unappreciated and shunned for going above the boss to get the painting that was causing me further health issues to stop during work hours. The sum total of the job as an error in my life will never be fully equated. It just is. My CA 125 began to rise just after the mold was unearthed and exposed behind the wallpaper that had hid it, despite its place in the air I breathed every day I went to work and stood or sat nearby the door and adjacent what turned out to be a very moldy wall area. When the remediation was completed and I returned to the workplace, it was to be exposed to paint fumes that proved to be too much for my system. My CA 125 rose every month from the time the mold was exposed and the chemical spray sprayed quite near where I was stationed that fateful morning in early March 2014. And it rose and rose...
So, fast forward this tale to August 2014 when the antigen number went above the normal range high end of 30. By early September it was 103.5 and it is currently 113.7. My ct scan with contrast reveals I have tumors growing in my spleen, liver and other areas in the peritoneal area. The gyn oncologist and surgeon Dr. Cunningham told me that it is inoperable. She believes it will again respond to the two chemo agents used before and that I will again go into remission. However, she told me that the first remission in ovarian cancer is generally the longest.
When I said I had more to do in this life and that we had planned to go to Italy in the fall, she suggested I go ahead and book that trip. I just didn't feel I could pack and move back to the northcoast of CA and go to Italy, and sell my house in order to have any money to survive with or pay my health costs, etc. So, no trip to Italy on the horizon right now and I have begun the ever-so-daunting task of packing and purging.
Tomorrow morning the local realtor will be coming over to look at the house. I have worked as hard as is possible to repair whatever needed repairing and to revamp all that it was in my power to revamp. The place looks as good as it ever has since I bought it 8 years ago. And I have had to face the fact I love the home, enjoy many aspects of living in Baldwinsville, NY, and will likely miss the house and property and many friends. But I cannot float the taxes and such without an income. Add to that the fact I miss my granddaughter and realize that I deep down desire the chance to be around her. I must believe that her mother will allow us that, no matter what in order to propel myself forward and go through the difficult and tedious tasks ahead.
But this time of challenge goes well beyond the simple (ha!) tasks of packing, selling, and arranging logistics of getting my belongings back to CA because my 93+ year old mother is now failing to eat or drink enough and is experiencing geriatric failure to thrive. She has been in and out of the ER due to dehydration and falls three times in the past week. And that all took time and energy that was already earmarked for moving forward.
I have met my new oncologist and she and I agreed on last Friday as a start date for chemo. She knows I will be moving back to CA while doing chemo. But I had to call and cancel last Friday due to time spent on mom's life and the fact I can add up the facts: if I begin chemo and get weak and tired, as my blog seems to indicate is what happened last time, I will not have the umph to get all I need to do done. Damn it! It has become such a time of challenge that I do not know quite how to handle it other than to keep my chin up and work until tired daily. I just got done raking the lawn, trimming greenery from steps to the front, mopping the kitchen floor and vacuuming the house.
The realtors will come tomorrow and will give me their assessment of my homes' value at 9 am. After they leave, I will drive to the assisted living place my mother currently resides at the request of the case manager, and we shall discuss my mother. There is no doubt they will be telling me that she is aging and poor-healthing herself out of there. So, am I to move her - again - before my own move and will that be before or after my chemo? I dare not schedule it until the meeting is over.
Yeah, this is a time like no other. I have recurrent ovarian cancer, stage IV, am trying to get it together to do a cross country move after beginning chemo, and while doing what is possible to see my mother through the end of her life. Sigh. This is a very sighable situation.
I will write more after tomorrow's meetings. I believe if anyone can achieve the goals I have, which of course include overcoming this cancer and living healthily for many years, it is me. Amen.
Tuesday, July 29, 2014
about today...
Today I realized I have not written lately. The second infusion of high dose vitamin c was exactly one week after the first and thus was the third. I'm writing the week after the third.
Looking back and wanting to be informative, hopefully so that folks, on any day, can use my example when comtemplating their own next move, I will talk about the dosage issue I ran into on week two. I began, the first of this year's vitamin c infusions at a 30 gram dose. Anything over 25 grams and up to 50 is charged as one rate. On the second week, I arrived and was told I would go up to 40 grams. I asked that the nurse convey to the doctor that I would sign a release of liability or whatever it would take to allow me to go up to 50 grams. The nurse said she would call for me. She later returned to say that my wishes would be honored. I chose to go up quicker because of the costs and my limited ability to provide myself the infusions, but also because I felt confident that last year, after gradually going up from 25 grams, I did very well with 50 grams as a steady amount.
At the third infusion, last week, I asked for a lab to be ordered and faxed to the location I wish to have it drawn. Follow up was required, but the ordered was placed and today I went and had the lab drawn. Interestingly and for me, even noteworthy, the new phlebotomist who put the tourniquet on looked nervous and couldn't find my vein by running his fingers over my arm. The female counterpart had the feel, so to speak, and as she put her hands right on the vein I know to always work well for output, I said to the young man, "If you might miss then I don't want you to try." He was prompt to say that he'd gladly let her....and I said that made me happy. She was extremely competent and it went as it should have: easy. I have learned to stand up for myself. There were far too many times last year I was hurt senselessly by incompetence. I'd like to avoid that.
Today I'm at a crossroad. I do not have any more vitamin c scheduled. There is no protocol for what I am doing. I ought to call Dr. Puc tomorrow and ask her what she can find in the research data. I just tried to find an answer to a question I came up with recently: would it have been better to bombard myself every 5 days or 3 days or? Is once a week adequate to have enough in my bloodstream to act as peroxide agents scouring anything that is possibly there but not yet showing up as a tumor on a scan? ...whatever is making the CA-125 number elevate progressively...please be gone...I mean that is what the mission of the infusions, afterall...and I am just curious what the best sequence of administration is with such a mission. I will provide a couple of url's attempted as links below to research I looked at...and if, by chance, anyone knows something more and can share that with me, I would listen and evaluate.
http://www.blockmd.com/blog/new-study-on-intravenous-vitamin-c-for-cancer
http://consumer.healthday.com/cancer-information-5/mis-cancer-news-102/vitamin-c-and-cancer-684595.html
http://www.cancer.gov/cancertopics/pdq/cam/highdosevitaminc/patient/page2
http://drhoffman.com/article/intravenous-vitamin-c-for-cancer-2/
...and this one I just found while creating this post, showing the research of the now deceased Dr. Riordan and colleagues:
http://www.doctoryourself.com/riordan1.html
I found dosages noted at the last site above and almost always infusions are administered twice weekly. I often feel a host of emotions over money versus getting to live...a gamut of emotions at that. Today I am working on my list of to-do's, knowing selling this house will provide me what I need...and embracing a bit of excitement when it surfaces for what it will feel like to have gone through the work between now and departing, all packed up.
Today I know I am at a crossroad because my lab results will show if there is any change in CA-125 number. What I just read has me concerned that I should have doubled up my dosages...I was hoping to not need more, but that seems likely. It feels crummy to not have a definitive source to tell me a protocol for my purposes...or a best idea of such...
I will end this by saying how strongly I feel the way in which research funding decisions are made is flat inhumane. The potential benefits of high dose iv vitamin c were negated by studies that used high oral doses of vitamin c. Sigh. I am hopeful that whatever info I gain through my experiences can somehow be of help to the goal of better understanding vitamin c's role in ridding one's self from ovarian cancer...with and without chemotherapy. I will post the lab results when they are back. Fingers crossed there will be some change noted...
Looking back and wanting to be informative, hopefully so that folks, on any day, can use my example when comtemplating their own next move, I will talk about the dosage issue I ran into on week two. I began, the first of this year's vitamin c infusions at a 30 gram dose. Anything over 25 grams and up to 50 is charged as one rate. On the second week, I arrived and was told I would go up to 40 grams. I asked that the nurse convey to the doctor that I would sign a release of liability or whatever it would take to allow me to go up to 50 grams. The nurse said she would call for me. She later returned to say that my wishes would be honored. I chose to go up quicker because of the costs and my limited ability to provide myself the infusions, but also because I felt confident that last year, after gradually going up from 25 grams, I did very well with 50 grams as a steady amount.
At the third infusion, last week, I asked for a lab to be ordered and faxed to the location I wish to have it drawn. Follow up was required, but the ordered was placed and today I went and had the lab drawn. Interestingly and for me, even noteworthy, the new phlebotomist who put the tourniquet on looked nervous and couldn't find my vein by running his fingers over my arm. The female counterpart had the feel, so to speak, and as she put her hands right on the vein I know to always work well for output, I said to the young man, "If you might miss then I don't want you to try." He was prompt to say that he'd gladly let her....and I said that made me happy. She was extremely competent and it went as it should have: easy. I have learned to stand up for myself. There were far too many times last year I was hurt senselessly by incompetence. I'd like to avoid that.
Today I'm at a crossroad. I do not have any more vitamin c scheduled. There is no protocol for what I am doing. I ought to call Dr. Puc tomorrow and ask her what she can find in the research data. I just tried to find an answer to a question I came up with recently: would it have been better to bombard myself every 5 days or 3 days or? Is once a week adequate to have enough in my bloodstream to act as peroxide agents scouring anything that is possibly there but not yet showing up as a tumor on a scan? ...whatever is making the CA-125 number elevate progressively...please be gone...I mean that is what the mission of the infusions, afterall...and I am just curious what the best sequence of administration is with such a mission. I will provide a couple of url's attempted as links below to research I looked at...and if, by chance, anyone knows something more and can share that with me, I would listen and evaluate.
http://www.blockmd.com/blog/new-study-on-intravenous-vitamin-c-for-cancer
http://consumer.healthday.com/cancer-information-5/mis-cancer-news-102/vitamin-c-and-cancer-684595.html
http://www.cancer.gov/cancertopics/pdq/cam/highdosevitaminc/patient/page2
http://drhoffman.com/article/intravenous-vitamin-c-for-cancer-2/
...and this one I just found while creating this post, showing the research of the now deceased Dr. Riordan and colleagues:
http://www.doctoryourself.com/riordan1.html
I found dosages noted at the last site above and almost always infusions are administered twice weekly. I often feel a host of emotions over money versus getting to live...a gamut of emotions at that. Today I am working on my list of to-do's, knowing selling this house will provide me what I need...and embracing a bit of excitement when it surfaces for what it will feel like to have gone through the work between now and departing, all packed up.
Today I know I am at a crossroad because my lab results will show if there is any change in CA-125 number. What I just read has me concerned that I should have doubled up my dosages...I was hoping to not need more, but that seems likely. It feels crummy to not have a definitive source to tell me a protocol for my purposes...or a best idea of such...
I will end this by saying how strongly I feel the way in which research funding decisions are made is flat inhumane. The potential benefits of high dose iv vitamin c were negated by studies that used high oral doses of vitamin c. Sigh. I am hopeful that whatever info I gain through my experiences can somehow be of help to the goal of better understanding vitamin c's role in ridding one's self from ovarian cancer...with and without chemotherapy. I will post the lab results when they are back. Fingers crossed there will be some change noted...
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