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. :)
Tuesday, May 7, 2013
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!
Wednesday, April 24, 2013
Vitamin C Infusion
Yesterday was sunny and warm enough that I was out in a short-sleeved shirt! It's sure been a long time coming. I also went on a three mile walk around Beaver Lake with Ed. I had to stop and rest at every bench, but it was a good achievement on a very good day.
Today has been one of doings on the phone. My dog, Trooper, has infections again. I've been soaking his feet in epsom salt water daily amongst other things, but with his toenails overgrown, he appears in need of antibiotics...again. Not gonna get into his health history, but it is sadly riddled with episode upon episode of problems. His phobia about getting his nails cut plays in...and since he is turning ten next month, it seems unlikely much will change. But, I will go get him a script of antibiotics and hope his pads are better by the time he goes to a new groomer for a pedicure Saturday morning.
I'm writing from a vitamin c infusion. I've lost count of how many I have had. I am certain they have played a positive role in my treatment, but will never be able to single it out. I see a transferable lesson...I cannot know precisely what brought cancer into my body. It would have killed me had I not discovered it via pain...and sought high quality treatment. Now I know the cancer has responded to treatment, but cannot know to what degree the components have led to that outcome. I know I have been the recipient of a great many prayers and well-wishes. I have also paid $200 for each weekly high dose vitamin c infusion. I have taken many supplements known to be helpful. And of course, I have had infusions of Chemo every three weeks. Meanwhile, I have been as positive and faithful as possible daily. There is no way to measure the percentage each component has had in the outcome. And in life, there is no way to measure roles in life and their outcomes, either.
The clouds are thickening outside. I have seen a very large bird of prey in the distance. I am about 40 minutes from being done. My next infusion, next Tuesday, is the last chemo!!! I feel ready. Thereafter I shall get vitamin c at least a month before saying goodby to a long drive to the Community General branch of Hematology Oncology. I have been devoted to myself and my treatment with the goal of living and carrying forth some of my dreams. I am thinking about such dreams now and imaging making them so. I see more joy ahead. And the gratitude I feel pools up and flows as tears from time to time.
Today has been one of doings on the phone. My dog, Trooper, has infections again. I've been soaking his feet in epsom salt water daily amongst other things, but with his toenails overgrown, he appears in need of antibiotics...again. Not gonna get into his health history, but it is sadly riddled with episode upon episode of problems. His phobia about getting his nails cut plays in...and since he is turning ten next month, it seems unlikely much will change. But, I will go get him a script of antibiotics and hope his pads are better by the time he goes to a new groomer for a pedicure Saturday morning.
I'm writing from a vitamin c infusion. I've lost count of how many I have had. I am certain they have played a positive role in my treatment, but will never be able to single it out. I see a transferable lesson...I cannot know precisely what brought cancer into my body. It would have killed me had I not discovered it via pain...and sought high quality treatment. Now I know the cancer has responded to treatment, but cannot know to what degree the components have led to that outcome. I know I have been the recipient of a great many prayers and well-wishes. I have also paid $200 for each weekly high dose vitamin c infusion. I have taken many supplements known to be helpful. And of course, I have had infusions of Chemo every three weeks. Meanwhile, I have been as positive and faithful as possible daily. There is no way to measure the percentage each component has had in the outcome. And in life, there is no way to measure roles in life and their outcomes, either.
The clouds are thickening outside. I have seen a very large bird of prey in the distance. I am about 40 minutes from being done. My next infusion, next Tuesday, is the last chemo!!! I feel ready. Thereafter I shall get vitamin c at least a month before saying goodby to a long drive to the Community General branch of Hematology Oncology. I have been devoted to myself and my treatment with the goal of living and carrying forth some of my dreams. I am thinking about such dreams now and imaging making them so. I see more joy ahead. And the gratitude I feel pools up and flows as tears from time to time.
Tuesday, April 23, 2013
Wee hour wake ups, time to wonder
It's been a while. It has sunk it that the cancer responded to the treatment. My mind gleefully runs off to create the next chapter in life and therein is a run-in with logistics. There are a few key uncertainties. Ordinarily, I would realize and embrace the "to be revealed" or tbr quality of not knowing what is next, really. But somehow, feeling like I was at the exit gate has me not wanting to dilly-dally. And yet, the truth is, any exit from life in CNY will entail a whole lot of purging and focused work. My notions of the post cancer chapter involve travel and fun, work, and relocation. My limited energy must be spent accomplishing some aspect of the departure often in order to accomplish getting out of B'ville. And, I feel like I began again today.
Make that yesterday, for it is an early am wake up session I find myself writing from within. For the third morning in a row, I awoke at approximately 4:20 am. I find no humor in it. This time I got up to see if I could see any of the meteor shower. Given how easily I get cold, this was a well thought out decision. In other words, I laid in bed thinking about the pros and cons before I actually made it out of bed. I wrapped a scarf around my neck and hat and slipped on my leather coat. I didn't use lighting in the house. I went onto the deck and stood there until I finally saw one. My conclusion is there was already too much light in the sky from the dawning of the day and from the suburban location I am in. Shucks. But, I did see one long streamer of a shooting star.
The sun has since risen. I will tire myself back to sleep. I have been getting ample rest, albeit broken up with this wee hour wake up. I have no idea if chemo has impacted my sleep pattern. I have been able to blame it for a few other symptoms. My stamina is down, for example. I accept it and plan for it's growth. I was laying here thinking about taping my handlebars and riding my bike. Even if I have to get off and push it up the hills for a week, I will be able to climb again. I know that I get a great feeling of freedom on my bike and hope to use it as a great means out of what feels like lethargy. I also think about how happy I will be to begin yoga again as a regular attendee. I know how quickly I will regain the good that comes from yoga. I tried to go back to practice only one time since beginning chemo. I was happy with my practice that day, although I could no longer keep up. But I went on to cut my thumb and that took me right out of yoga. With my life so focused around chemo, I made the conscious decision to wait to go until I could go regularly and that will be very soon.
I look ahead to next week now in a different way. I spent some time redoing part of my cancer circle calender last night. I think few look at it, perhaps fewer than read this blog. My strong desire is to end this chapter of chemo with ample help. I know what a difference it makes to be able to ask for a drink, to know the dog is fed, to have food brought to my bedside. And I want to feel like this time, I will be able to be as I was the first chemo round: cared for. I am unsure the calender has been that useful a tool. It feels contrived. Those closest to me should not have to sign in and sign up to come and help me through my tough time. I'm obviously unclear on how it feels to be others. I only know that this has been my biggest time of need in my life. I do not feel I have done well at asking for help. There have been offers that have not manifested into action, people sometimes called when I was asleep and then one thing led to another and I did not return the calls, there have been people who have called on a day I feel a bit better and I do not chose to trouble them into showing up, sometimes, in part, because I do not know them well at all and feel funny about it, and there have been days I hoped someone would call and show up, but I have laid alone. The post chemo times have been those I have fallen to tears the most.
Anticipation about next week is high. The last chemo. This feels big. I know it will be an impacting one in many ways. It is the send off of the chapter I have been in since November.
I am tiring. I will be able to get back to sleep for a few hours. I hope the sunny warm day ahead is filled with joy. I have a few key things scheduled...and one is an outdoor adventure in the sunshine. I know that the many questions that fill my head and are likely behind these wake up sessions need to be put forth on the table of discussion with those who are intertwined in my life. I have been really trying on the notion of setting the way back machine up and embracing a nomadic lifestyle for a while. A year of traveling around, visiting old friends, seeing beautiful places I have wanted to see, living with eyes open wide, taking in newness...feels like the right step to take...and tbr feels like the only way to end this and get back to sleep.
Make that yesterday, for it is an early am wake up session I find myself writing from within. For the third morning in a row, I awoke at approximately 4:20 am. I find no humor in it. This time I got up to see if I could see any of the meteor shower. Given how easily I get cold, this was a well thought out decision. In other words, I laid in bed thinking about the pros and cons before I actually made it out of bed. I wrapped a scarf around my neck and hat and slipped on my leather coat. I didn't use lighting in the house. I went onto the deck and stood there until I finally saw one. My conclusion is there was already too much light in the sky from the dawning of the day and from the suburban location I am in. Shucks. But, I did see one long streamer of a shooting star.
The sun has since risen. I will tire myself back to sleep. I have been getting ample rest, albeit broken up with this wee hour wake up. I have no idea if chemo has impacted my sleep pattern. I have been able to blame it for a few other symptoms. My stamina is down, for example. I accept it and plan for it's growth. I was laying here thinking about taping my handlebars and riding my bike. Even if I have to get off and push it up the hills for a week, I will be able to climb again. I know that I get a great feeling of freedom on my bike and hope to use it as a great means out of what feels like lethargy. I also think about how happy I will be to begin yoga again as a regular attendee. I know how quickly I will regain the good that comes from yoga. I tried to go back to practice only one time since beginning chemo. I was happy with my practice that day, although I could no longer keep up. But I went on to cut my thumb and that took me right out of yoga. With my life so focused around chemo, I made the conscious decision to wait to go until I could go regularly and that will be very soon.
I look ahead to next week now in a different way. I spent some time redoing part of my cancer circle calender last night. I think few look at it, perhaps fewer than read this blog. My strong desire is to end this chapter of chemo with ample help. I know what a difference it makes to be able to ask for a drink, to know the dog is fed, to have food brought to my bedside. And I want to feel like this time, I will be able to be as I was the first chemo round: cared for. I am unsure the calender has been that useful a tool. It feels contrived. Those closest to me should not have to sign in and sign up to come and help me through my tough time. I'm obviously unclear on how it feels to be others. I only know that this has been my biggest time of need in my life. I do not feel I have done well at asking for help. There have been offers that have not manifested into action, people sometimes called when I was asleep and then one thing led to another and I did not return the calls, there have been people who have called on a day I feel a bit better and I do not chose to trouble them into showing up, sometimes, in part, because I do not know them well at all and feel funny about it, and there have been days I hoped someone would call and show up, but I have laid alone. The post chemo times have been those I have fallen to tears the most.
Anticipation about next week is high. The last chemo. This feels big. I know it will be an impacting one in many ways. It is the send off of the chapter I have been in since November.
I am tiring. I will be able to get back to sleep for a few hours. I hope the sunny warm day ahead is filled with joy. I have a few key things scheduled...and one is an outdoor adventure in the sunshine. I know that the many questions that fill my head and are likely behind these wake up sessions need to be put forth on the table of discussion with those who are intertwined in my life. I have been really trying on the notion of setting the way back machine up and embracing a nomadic lifestyle for a while. A year of traveling around, visiting old friends, seeing beautiful places I have wanted to see, living with eyes open wide, taking in newness...feels like the right step to take...and tbr feels like the only way to end this and get back to sleep.
Wednesday, April 17, 2013
BIG BEST-CASE-SCENARIO NEWS!
Today's appointment with Dr. Puc went as best as could be imagined. She came in with a glow about her with the PET and CT scan results in print. She asked a few questions and launched into the results. At a point, instead of paraphrasing, she began to read. The thesis statement of the report: "There has been a complete response to therapy. There are no longer PET positive lesions."
It went into details about the tumors of late January, their sizes and in each case the sentence ended in "no longer present." There were tumors on the colon, spleen, liver and abdominal area seven weeks after surgery. Now, I am essentially cancer free. But, there is a chance there are microscopic bits and that is why I will do one more round of chemo. Insurance of sorts.
Dr. Puc and I discussed what to do next. She said typically after a PET result like mine, which she went on to say is not all that common with Stage IV cancer, they would recommend two more rounds of chemo. I brought up the fact that my CA-125 number was in normal range after the second chemo, and that had we done a PET sooner, the results would likely have been the same. Therefore, I wondered if we could safely conclude I have done at least one more round already. I asked the doctor if she would put herself in my shoes and tell me what she would do if she were me, and I pointed out that this round is still effecting me over a week later and the next is likely to be worse. She said if she were me, she would do one more round. She also said she would scale the round back 10%. So that is the plan. My last chemo is April 30. I will then continue with Vitamin C into May as can be afforded.
I asked about getting the port removed. She said no. She said that will stay in...and seemed to indicate it may need to be used again. The thing that I know to be noteworthy in my situation is that Dr. Puc is not a gynecological cancer specialist. She is an integrative oncologist, which is what I wanted. She has consistently looked at the whole picture and again today pointed out how my positive attitude has been vital. Dr. Puc seems delighted and surprised at my outcome, but my surgeon who is an ovarian cancer specialist stated she would be very surprised if I were not in remission after treatment. Dr. Brown at Memorial Sloan Kettering Cancer Center, another ovarian cancer specialist, said that ovarian cancer responds very well to the two-chemo-combo I have now completed four rounds of. Knowing these experts had stated this to me, I truly always believed the cancer would respond to treatment. Back to the port...I'm ok leaving it for a while. They will be drawing blood monthly to check the CA-125 markers. The port simplifies blood draws. But, I believe, whole-heartedly that I will not need it for further chemo treatments. I am not gonna let cancer get back in me. My body is not gonna be a hostess anymore. That's me taking a stand, just like I took one to embrace therapy and to do so with as much grace as possible. I will admit, I cried more than I thought I would, given I really went into this knowing the importance of positivity. I cried when I felt unable to do for me and like I had to ask and hope for what would have seemed to me at the time to have been karmic-turnabout to have just received what I needed. I cried over agonizing bone pain, I cried over simple misunderstandings, I cried feeling woe is me. But, it sure wasn't the majority of the time or anything close to that. So, I cut myself slack and wonder if just about anyone might have cried that much anyhow.
But...whooooo-hooo...I am grateful and happy and thinking about how I would like to start making some plans about what is next!
It went into details about the tumors of late January, their sizes and in each case the sentence ended in "no longer present." There were tumors on the colon, spleen, liver and abdominal area seven weeks after surgery. Now, I am essentially cancer free. But, there is a chance there are microscopic bits and that is why I will do one more round of chemo. Insurance of sorts.
Dr. Puc and I discussed what to do next. She said typically after a PET result like mine, which she went on to say is not all that common with Stage IV cancer, they would recommend two more rounds of chemo. I brought up the fact that my CA-125 number was in normal range after the second chemo, and that had we done a PET sooner, the results would likely have been the same. Therefore, I wondered if we could safely conclude I have done at least one more round already. I asked the doctor if she would put herself in my shoes and tell me what she would do if she were me, and I pointed out that this round is still effecting me over a week later and the next is likely to be worse. She said if she were me, she would do one more round. She also said she would scale the round back 10%. So that is the plan. My last chemo is April 30. I will then continue with Vitamin C into May as can be afforded.
I asked about getting the port removed. She said no. She said that will stay in...and seemed to indicate it may need to be used again. The thing that I know to be noteworthy in my situation is that Dr. Puc is not a gynecological cancer specialist. She is an integrative oncologist, which is what I wanted. She has consistently looked at the whole picture and again today pointed out how my positive attitude has been vital. Dr. Puc seems delighted and surprised at my outcome, but my surgeon who is an ovarian cancer specialist stated she would be very surprised if I were not in remission after treatment. Dr. Brown at Memorial Sloan Kettering Cancer Center, another ovarian cancer specialist, said that ovarian cancer responds very well to the two-chemo-combo I have now completed four rounds of. Knowing these experts had stated this to me, I truly always believed the cancer would respond to treatment. Back to the port...I'm ok leaving it for a while. They will be drawing blood monthly to check the CA-125 markers. The port simplifies blood draws. But, I believe, whole-heartedly that I will not need it for further chemo treatments. I am not gonna let cancer get back in me. My body is not gonna be a hostess anymore. That's me taking a stand, just like I took one to embrace therapy and to do so with as much grace as possible. I will admit, I cried more than I thought I would, given I really went into this knowing the importance of positivity. I cried when I felt unable to do for me and like I had to ask and hope for what would have seemed to me at the time to have been karmic-turnabout to have just received what I needed. I cried over agonizing bone pain, I cried over simple misunderstandings, I cried feeling woe is me. But, it sure wasn't the majority of the time or anything close to that. So, I cut myself slack and wonder if just about anyone might have cried that much anyhow.
But...whooooo-hooo...I am grateful and happy and thinking about how I would like to start making some plans about what is next!
Tuesday, April 16, 2013
PET scan & CT scan with contrast
This morning I was up earlier than necessary. I slept ok, but not quite long enough. I readied for the appointment by dressing and getting the dog fresh water, scrubbing his food bowl and filling it. I drank some San Pellegrino water, too. Ricky and Ann Marie picked me up at the scheduled time. They dropped me off. I filled out forms designed to protect the imaging center and completed the intake process with a band around my right wrist identifying me.
When I was called, I noted an oddity that I couldn't quite identify about the woman who came. She was callous in her mannerisms. She did not inspire confidence, and I hoped she would not be the one who would be dealing with me. But she was. She informed me that I would not be accessed through the port and cited the radioactive material would stick to the tubing in me. I said, "Oh, No thank you!" and she said I was funny. Hmm...that was not even designed to be a funny comment.
When she tightened the tourniquet on my arm I silently asked that it go well, Well, she missed. She poked around with the needle and as she did so, it hurt. I winced. She apologized, and tried probing around from within again, to no avail. I made a moaning "owww" sound and she screamed out a colleagues name. When the woman arrived at the door, she asked "is she giving you a hard time?" referring to me and the bruiser said "yes"...talk about displacing your incompetences...victimizing the victim...right about then, as she continued to probe sideways from within, she said "I got it!" and she had. Next, and quickly, she inserted a tube of saline and pushed it through and not long thereafter she was screwing a tube of yellow substance into the end of the line in me and as she screwed, she was again hurting me. At this point, I was beginning to sob. I wish the process did not put me through pain. But, it did, It was. And is seemed prolonged. Her attitude and demeanor were not at all helpful.
As soon as she had inserted a total of three tubes of materials, at least some of which were radioactive material designed to leach out of me all day, she escorted me to a restroom. After I peed, she escorted me into a room darkened and instructed me to sit down. I was sobbing again, her very presence was difficult for me. She pushed the recliner back and asked if I wanted a warm blanket. No brainer..."yes, please"...and as soon as the blanket was on me, she said, see you in an hour and shut the door.
At first I felt the sensations in me. It is odd. You do feel an effect as the fluid mixes in your body chemistry. I used a tissue, finished sobbing and put it down. I closed my eyes. I began to doze. I dozed in and out, with some dreams I cannot recall occurring and ending in a daze. At the point it had been an hour, another woman came and asked me to come with her.
I walked across the hall and as instructed, I laid upon the table, I put my hands above my head as she asked, careful not to catch the taped on IV on anything. After I was as she had asked me to be, she asked if my bra had any metal in it. I thought. No underwire...but oh...wait, yes the hooks are metal. She told me that for the CAT scan, there could be no metal and asked that I remove the bra. It turned out to be tricky to do so with a shirt and sweater on and the taped IV. So, I had to removed the sweater, which was deemd to have a small amount of metal on a button, part of the shirt, and finally the bra. The woman took the sweater and bra. It was then time to get repositioned. A prescan confirmed whatever was necessary to confirm and then the woman had me hold my arm with the IV up in a very uncomfortable way while she went and got someone else. That made little sense, but I complied. As she walked away I began to question the strangeness of the entire appointment the entire time. But, very soon she was back and screwing a tube of contrast material into my IV and then she told me to hold very still and be ready to go into the machine. She said to let her know if it hurt while going in and then began the process of injecting it into the IV. I began to feel the sensations I have had before during a CT scan...the feeling like I am wetting myself, the warm sensations and other sensations within. I'm unsure how many minutes it took, but in a relatively short amount of time, the scan was concluded.
She removed the tubing that was linked to a machine that inserted a prescribed dose. I was free of that and ready for the PET scan. That simply involved hands over head and complete stillness. I was getting very chilly, but knew to go with the flow. Still I was. And it took about 15 minutes of stillness while the gurney I rested on shifted up and down the track and into the machine where various noises were occurring.
When enough imagery was gathered, she instructed me to sit up and next to stand up. She handed me my bra, sweater, water and she brought purse and jacket to the bathroom where I dressed. I walked to the waiting room where my sister was sitting. We exited and Ricky picked us up as we exited to the sidewalk. We talked some enroute to my house. I am glad to have the scans over.
I think my tolerance for getting hurt by others while doing all that is required to become cancer free is down considerably. It used to be easier when such things happened. I am raw now. Vulnerably raw. I am paying a price in many ways to get on the other side of cancer. And, of course, it is worth it.
For a moment I wandered to the distant Pacific Ocean. I just got a pic from the SF shore on my phone. Ah. I tell myself, "you will go to the oceanside one day in the not too distant future. Perhaps the Atlantic sooner. I shall rejoice.
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