Pat and I will be getting up very early to get ready, bundling Bennett out of bed and delivering her to Sandy and Avy at the crack of dawn. We need to be in Worcester at 8 for tests. I am nervous and curious. I am sure I am going to pass the tests, but curious about what they will have me do the night before. I know I have to do what they so innocuously call "bowel prep." That's a nice way of saying that I will have to take the most enormous amount of laxative and spend the evening and night pooping my brains out. This will take place at Hope Lodge, where I will be spending the night before surgery. Lucky them.
I had a good day today. Lots of energy, probably from Reiki. Reiki is wonderful. I love it. I love all those therapies where I am attended to and made to relax in a profound way. I have acupuncture on Thursday, then I am on my own until I get back from the hospital. I think they will have other ways to get me to relax in a profound way at the hospital. I decided to cancel my talk therapy this week. I was supposed to go on Friday. I leave there so anxious that I decided it would just be better to do without. I couldn't figure out what my outlet for that anxiety would be. The last two sessions happened before acupuncture, so Nancy helped me deal with my anxiety. This time, there is just me and that is not enough these days.
So I went to Reiki, came home and hung out with Bennett. Bennett's BFF Avy came over to play for a little while and I got to visit with Sandy. It was nice. It felt pretty normal. It would have felt even more normal if we didn't spend half the time talking about cancer and surgery.
I am going to end here. I still feel the fighting spirit and hope you all will send me your fighting prayers. Is there such a thing? There is now.
Showing posts with label prayer. Show all posts
Showing posts with label prayer. Show all posts
Tuesday, December 28, 2010
Saturday, December 11, 2010
Post 111
This is my 111th post. I can't believe it. I think 110 posts ago, I thought I would be dead by now. Cancer has such a bad reputation, that it's hard not to think you are going to drop dead at any moment. I supposed that might be true if you had a bad heart or something, but my guess is if I am going to die, they will let me know a few weeks or months ahead of time.
My God how did I get onto that subject. I have had a worrying day. Not for you to worry about, but I have been worrying. What about? Mostly silly things like is my head going to be cold while I am in the hospital? My hair looks so bad, I am worried about not being in control of having a hat on all the time. This strange vanity is also a bit worrying, now that I think about it. I just have to give it all up to God. That's the answer, and I know it. I have to give up the parts that I can't control - like how Pat is going to manage. She totally will, but I hate to think of all she is going to have to do. I am worried that Bennett is going to accidentally hurt me while I am healing. I am afraid that Pat will get snowed in while visiting me at the hospital, I am worried that I am going to have to spend so many hours alone at the hospital, I am worried that they will open me up and find something they didn't know about and just have to sew me back up. This is just the tip of the worry-berg.
It's funny to go from one day of feeling groovy, to the next of not feeling that groovy at all. I feel like saying that fear is a fickle friend, but I am not sure that makes any sense. I guess it means that today fear was a visiting, and yesterday he must have been at someone else's house.
On the brighter side. We got our tree today. It's little- only just over 5 ft. Bennett was more interested in playing on the playground where we got the tree than getting the tree, but once we got the box of ornaments out, she was totally into it. She hung most of the ornaments- luckily most of them are plastic.
No one else is up right now, so here I am with the tree. Take a moment to notice just by my right (to you) ear the sock hanging on the tree. When we ran out of ornaments, B decided she would start hanging the laundry on the tree. We stopped her at two socks.
B also found two of her presents today and does not believe me that Santa took all of the Amazon.com boxes with him to wrap the presents and will bring them back on Christmas morning. Boy, it is hard to wait for Christmas when the concept of time is so abstract.
That's all for today. I am going to go with my intuition and not ask the surgeon to say affirmations. I am going to believe with all my heart that God and you all will be watching over me that day and the he (the surgeon) needs to do his job unhindered. It just seems like the experts should be doing what they are supposed to be doing. You guys praying and sending light, the surgeon operating. Right? Right.
My God how did I get onto that subject. I have had a worrying day. Not for you to worry about, but I have been worrying. What about? Mostly silly things like is my head going to be cold while I am in the hospital? My hair looks so bad, I am worried about not being in control of having a hat on all the time. This strange vanity is also a bit worrying, now that I think about it. I just have to give it all up to God. That's the answer, and I know it. I have to give up the parts that I can't control - like how Pat is going to manage. She totally will, but I hate to think of all she is going to have to do. I am worried that Bennett is going to accidentally hurt me while I am healing. I am afraid that Pat will get snowed in while visiting me at the hospital, I am worried that I am going to have to spend so many hours alone at the hospital, I am worried that they will open me up and find something they didn't know about and just have to sew me back up. This is just the tip of the worry-berg.
It's funny to go from one day of feeling groovy, to the next of not feeling that groovy at all. I feel like saying that fear is a fickle friend, but I am not sure that makes any sense. I guess it means that today fear was a visiting, and yesterday he must have been at someone else's house.
On the brighter side. We got our tree today. It's little- only just over 5 ft. Bennett was more interested in playing on the playground where we got the tree than getting the tree, but once we got the box of ornaments out, she was totally into it. She hung most of the ornaments- luckily most of them are plastic.
B also found two of her presents today and does not believe me that Santa took all of the Amazon.com boxes with him to wrap the presents and will bring them back on Christmas morning. Boy, it is hard to wait for Christmas when the concept of time is so abstract.
That's all for today. I am going to go with my intuition and not ask the surgeon to say affirmations. I am going to believe with all my heart that God and you all will be watching over me that day and the he (the surgeon) needs to do his job unhindered. It just seems like the experts should be doing what they are supposed to be doing. You guys praying and sending light, the surgeon operating. Right? Right.
Tuesday, November 30, 2010
3 More Days + Chemo Tomorrow
How can it be that I have to wait for test results and have chemo at the same time? It seems like the meanest combination of things. My friend Kathy sent this article about how hard it is to wait for test results and it is true. I am not sure that I agree that it is better to know a hard diagnosis than to wait, but I know both are super hard. That's putting it mildly, really it all totally bites.
I had an incredibly anxious morning and it was especially difficult because I could almost call yesterday a serene day. The contrast made today's anxiety even harder. I had acupuncture which was again sort of mysterious. I asked a lot of questions this time. I thought she would put the needles in exactly the same places as last time, but no. This time the she did a organ detox which involved a bunch of needles up and down either side of my spine, one in my foot, and one on the side of my neck. It was really interesting and relaxing. Those needles stayed in for 15 minutes and then she did some acupuncture where she just put the needles in and out - in my knees, shins and the tops of my feet. I don't know if all of this detail is interesting, but since acupuncture is so new and mysterious to me, I want to tell about it. It's not like reflexology or Reiki which are so immediate and hands on. This is almost more of a leap of faith for me. I would have thought it would be the opposite - another mystery, another leap of faith.
I have chemo tomorrow. I am really praying for good WBC counts so that we can keep going. I have felt pretty good to very good for the past two weeks. Of course lots of naps help and Pat has been really concentrating on making sure I eat and have lots of tea. It really makes a difference because I forget to eat and when she hands me a bowl of warm pumpkin custard with cream on it, I just eat it and it even tastes good. I hardly ever think of opening the refrigerator, it just doesn't cross my mind. Jaw dropping, I know.
Pat and Bennett are making cookie dough right now. I can count on hot almond cookies later. I'll give you an update on my weight tomorrow. I have been trying really hard to maintain and even gain weight. Last time I was at the doc, I had gained four pounds. I would like to have that be true again. I am not feeling quite as gaunt as I was. That is a good thing.
Okay everyone one, it's that time again. Light and prayers for a good chemo please. Thank you from the bottom of my heart, I couldn't have made this far without your prayers, help and light. You all are my light.
I had an incredibly anxious morning and it was especially difficult because I could almost call yesterday a serene day. The contrast made today's anxiety even harder. I had acupuncture which was again sort of mysterious. I asked a lot of questions this time. I thought she would put the needles in exactly the same places as last time, but no. This time the she did a organ detox which involved a bunch of needles up and down either side of my spine, one in my foot, and one on the side of my neck. It was really interesting and relaxing. Those needles stayed in for 15 minutes and then she did some acupuncture where she just put the needles in and out - in my knees, shins and the tops of my feet. I don't know if all of this detail is interesting, but since acupuncture is so new and mysterious to me, I want to tell about it. It's not like reflexology or Reiki which are so immediate and hands on. This is almost more of a leap of faith for me. I would have thought it would be the opposite - another mystery, another leap of faith.
I have chemo tomorrow. I am really praying for good WBC counts so that we can keep going. I have felt pretty good to very good for the past two weeks. Of course lots of naps help and Pat has been really concentrating on making sure I eat and have lots of tea. It really makes a difference because I forget to eat and when she hands me a bowl of warm pumpkin custard with cream on it, I just eat it and it even tastes good. I hardly ever think of opening the refrigerator, it just doesn't cross my mind. Jaw dropping, I know.
Pat and Bennett are making cookie dough right now. I can count on hot almond cookies later. I'll give you an update on my weight tomorrow. I have been trying really hard to maintain and even gain weight. Last time I was at the doc, I had gained four pounds. I would like to have that be true again. I am not feeling quite as gaunt as I was. That is a good thing.
Okay everyone one, it's that time again. Light and prayers for a good chemo please. Thank you from the bottom of my heart, I couldn't have made this far without your prayers, help and light. You all are my light.
Saturday, November 27, 2010
Scanxiety
I had my scan today. It was mostly fine. The hospital was very quiet because of the holiday weekend. I didn't see another patient, and only two or three workers. The first person who helped me had on a sweatshirt that said "prayer, the original wireless connection." I took that as a good sign.
The scan went exactly as I described yesterday - way too much tropical flavored Barium drink. No radio isotopes, I guess, just barium. I drank it over the hour, they popped me in the machine, made me feel like I peed my pants, took the images and when we were done I started to shake uncontrollably- teeth chattering the whole bit. They wrapped me in hot blankets and let me lie down for a few minutes, it was weird. Ruth says it was my body's way of releasing tension and anxiety. I believe that because after the scan, lying in those hot blankets, I could have fallen right to sleep.
I had to wait to get home to do that. I got home around noon, took a full pill of Atavan and crawled into bed. I needed it. I slept for about an hour and half and had a nice afternoon with Pat and Bennett. I think I still feel a little of that Atavan all these hours later - very calm. It could also be that I am so grateful the scan is done. I don't know.
I do know, however, that this week is going to be hard to get through. Just day by day, that's the only way to get through it. I have chemo on Wednesday - another big one with Neulasta. I am not nervous about that this time. Unless there's some cumulative effect I don't know about. There is always so much that I don't know about.
At the beginning of November, when Pat and I wrote everything down on the calendar, November seemed like it was going to be impossible to get through. And now we are almost through it. Thank God. I have to admit all of the things we thought we were going to be able to do, we couldn't do. But that's okay. We all just did what we needed to do, with tons of help. and we got by relatively unscathed. So far. So let's all keep our fingers crossed that the week goes okay. I am hoping for as much patience as I can muster. So far, so good.
The scan went exactly as I described yesterday - way too much tropical flavored Barium drink. No radio isotopes, I guess, just barium. I drank it over the hour, they popped me in the machine, made me feel like I peed my pants, took the images and when we were done I started to shake uncontrollably- teeth chattering the whole bit. They wrapped me in hot blankets and let me lie down for a few minutes, it was weird. Ruth says it was my body's way of releasing tension and anxiety. I believe that because after the scan, lying in those hot blankets, I could have fallen right to sleep.
I had to wait to get home to do that. I got home around noon, took a full pill of Atavan and crawled into bed. I needed it. I slept for about an hour and half and had a nice afternoon with Pat and Bennett. I think I still feel a little of that Atavan all these hours later - very calm. It could also be that I am so grateful the scan is done. I don't know.
I do know, however, that this week is going to be hard to get through. Just day by day, that's the only way to get through it. I have chemo on Wednesday - another big one with Neulasta. I am not nervous about that this time. Unless there's some cumulative effect I don't know about. There is always so much that I don't know about.
At the beginning of November, when Pat and I wrote everything down on the calendar, November seemed like it was going to be impossible to get through. And now we are almost through it. Thank God. I have to admit all of the things we thought we were going to be able to do, we couldn't do. But that's okay. We all just did what we needed to do, with tons of help. and we got by relatively unscathed. So far. So let's all keep our fingers crossed that the week goes okay. I am hoping for as much patience as I can muster. So far, so good.
Friday, November 26, 2010
Scan Tomorrow
Yikes! I am nervous. I am trying not to be, because I know exactly what happens when you get a CT scan. I will describe it for those of you who have not had the pleasure. First you can't eat or drink anything four hours before the procedure - since my scan is at 8:45 that pretty much means nothing after I fall asleep tonight. You get there, they put you in a Johnny gown and then the worst part - you have to drink about four or five cups of this nasty nasty liquid that is flavored in a way that is supposed to cover the taste (so far I have had coconut twice and eggnog once - how about a nice chocolate? Eggnog? Really.) of the radio isotopes or whatever they are putting in me to make my insides light up. Then I have to wait an hour for the liquid to travel throughout my digestive system. Then just before the scan. two more indignities - another cup of nasty goop and a shot of something through an IV that literally makes you feel like you've wet your pants right there. It is the most uncanny feeling. Then they strap your arms over your head, and put you in a giant donut shaped machine that tells you when to breathe and not breathe and makes a lot of banging noise. The room is freezing and dark and loud, and for some reason the light is always blue. I wish I could remember how long the scan takes, I remember the PET scan was 26 minutes because I asked while I was stuck in a claustrophobic beige tube. I only opened my eyes once and then started praying like mad. It was really scary.
This is nothing, absolutely nothing, compared to a liver biopsy which is about the worst procedure I've ever experienced in my life. I am not even going to continue writing about it, just know it was horrible and I wouldn't wish it on my worst enemy (if I had one).
As procedures go - liver biopsy worst, PET scan second worst, CT scan not that bad. Honestly, it's the week long wait for what the tumor board has to say that is going to be the hardest. I am just trying to give it to God and hope for the best. What is the best? Totally spontaneous remission. Okay, if I can't have that, I will take significant tumor shrinkage. So, put on your best light gathering equipment and send that light my way. Pray, gather and send light, light a candle, whatever, just think tiny disappearing tumors. Thanks,
I will get the results on Friday, Dec 3 at 1. I will, of course, be posting about it that night - good or bad. You all deserve to know asap since we are all in this together.
This is nothing, absolutely nothing, compared to a liver biopsy which is about the worst procedure I've ever experienced in my life. I am not even going to continue writing about it, just know it was horrible and I wouldn't wish it on my worst enemy (if I had one).
As procedures go - liver biopsy worst, PET scan second worst, CT scan not that bad. Honestly, it's the week long wait for what the tumor board has to say that is going to be the hardest. I am just trying to give it to God and hope for the best. What is the best? Totally spontaneous remission. Okay, if I can't have that, I will take significant tumor shrinkage. So, put on your best light gathering equipment and send that light my way. Pray, gather and send light, light a candle, whatever, just think tiny disappearing tumors. Thanks,
I will get the results on Friday, Dec 3 at 1. I will, of course, be posting about it that night - good or bad. You all deserve to know asap since we are all in this together.
Monday, November 15, 2010
Chemo Tomorrow
Get out your prayer beads, your light gathering tools, your whatever you need to remember to send me prayers and light tomorrow for the big chemo tomorrow. That's all I need, for you to take a few minutes tomorrow to send energy my way. I will feel it - it will hold me steady and help me so much.
As you may have guessed, I am a little worried about this chemo. Maybe not about tomorrow so much as what will happen over the course of the week after. The last time I had this big a dose was my very first dose. Remember the extremely rare side effect of slurred speech? I am nervous about that again. They will pump me full of steroids and anti-nausea, anti-everything before hand, but those things wear off probably by Wednesday night.
Okay, I get that I am worrying too much. It will be what it will be and that's all it can be. But it will be so much more with your thoughts and prayers. So pray-away and I thank you for it.
As you may have guessed, I am a little worried about this chemo. Maybe not about tomorrow so much as what will happen over the course of the week after. The last time I had this big a dose was my very first dose. Remember the extremely rare side effect of slurred speech? I am nervous about that again. They will pump me full of steroids and anti-nausea, anti-everything before hand, but those things wear off probably by Wednesday night.
Okay, I get that I am worrying too much. It will be what it will be and that's all it can be. But it will be so much more with your thoughts and prayers. So pray-away and I thank you for it.
Wednesday, November 3, 2010
Chemo Day Two
The pump is pumping and while it's pumping, I am getting more and more tired. Pat and Bennett both have mild colds, so we are all a little out of sorts. Bennett, right now, is refusing to get into the tub, I am posting and poor Pat is running interference between the tub and our stubborn daughter.
Today I took B to school, went to reflexology and had an hour-long meeting with the pastor of St Paul's church. I took a short nap, went with P&B to pick up our new to us car and now I am about to fall over. Tomorrow I have to go to Worcester to return the pump. The only other thing I have to do is take B to school. My ride is not available until after noon, so I should have enough time to have a nap and get my ears in order. BTW it took until noon today for my ears to fix themselves. Usually it's about 10, but today was especially challenging. I really think it's a side effect from the chemo - even though Dr. B says he's never seen this as a side effect.
Reflexology was a dream. I wish I could go every day. I had an appointment with a therapist last night that I had to cancel. I am really sorry, because it is someone I want to work with. I will call tomorrow and make sure that we can reschedule. I had an appointment with an oncology social worker at UMASS. It was okay. There is only one OSW for the entire program so she doesn't take on hourly clients, but is available to talk anytime I am there for chemo. She did most of the talking and didn't really seem that interested in eliciting anything from me. I guess that experience will help me know more about what I am looking for in a therapist.
My time with Pastor Barbara was really great. She is very open and affirming (code for gay-friendly), had a lot of nice things to say about Holyoke and our community. She was great at answering my questions and made me want to continue to have a relationship with St Paul's. She is going to arrange for a healing prayer thing that will happen during the service - more than just reading the names of those who would like a prayer. I really appreciated that, and of course burst into tears. I am going to the 10am service on Sunday to witness a baptism, which I have never seen. I am sort of looking forward to it. This is one of those things that is a big surprise to me.
So, tomorrow more will be revealed. Right now I am about to fall asleep right here from tiredness. I wish I had more energy, really, it would be helpful.
Today I took B to school, went to reflexology and had an hour-long meeting with the pastor of St Paul's church. I took a short nap, went with P&B to pick up our new to us car and now I am about to fall over. Tomorrow I have to go to Worcester to return the pump. The only other thing I have to do is take B to school. My ride is not available until after noon, so I should have enough time to have a nap and get my ears in order. BTW it took until noon today for my ears to fix themselves. Usually it's about 10, but today was especially challenging. I really think it's a side effect from the chemo - even though Dr. B says he's never seen this as a side effect.
Reflexology was a dream. I wish I could go every day. I had an appointment with a therapist last night that I had to cancel. I am really sorry, because it is someone I want to work with. I will call tomorrow and make sure that we can reschedule. I had an appointment with an oncology social worker at UMASS. It was okay. There is only one OSW for the entire program so she doesn't take on hourly clients, but is available to talk anytime I am there for chemo. She did most of the talking and didn't really seem that interested in eliciting anything from me. I guess that experience will help me know more about what I am looking for in a therapist.
My time with Pastor Barbara was really great. She is very open and affirming (code for gay-friendly), had a lot of nice things to say about Holyoke and our community. She was great at answering my questions and made me want to continue to have a relationship with St Paul's. She is going to arrange for a healing prayer thing that will happen during the service - more than just reading the names of those who would like a prayer. I really appreciated that, and of course burst into tears. I am going to the 10am service on Sunday to witness a baptism, which I have never seen. I am sort of looking forward to it. This is one of those things that is a big surprise to me.
So, tomorrow more will be revealed. Right now I am about to fall asleep right here from tiredness. I wish I had more energy, really, it would be helpful.
Wednesday, October 20, 2010
Meeting with Dr. B
Today I had my big meeting with Dr. Bathini. I came out of there terrified for my life. I didn't really learn anything new, just that he has a way of presenting information in such a stark way that I feel knocked down. There's nothing new to report, and I know that logically, but logic is lost to me in this situation. I still have the same cancer I did yesterday, I still know that I will never go back to being who I was before I was diagnosed - physically that is. I get that surgery, if any, is a long way away. My liver is a mass of tumors and my lymph nodes are a mess. I get all that. It's just hearing it all again, in the doctor's office while he is trying desperately to help me remember there is so much good news. So many advances in the medication, so many people living much longer than they ever imagined, so many new procedures and drugs.
This all well and good, but what I really wanted to do was shake him by the lapels and yell. Yell anything, things like "am I going to live?" "will I die a very painful death?" "what the hell are you talking about, this can't be my body you are talking about."
Now we are getting somewhere. How could all of this be about me? Me, the one who has always been so strong and healthy? How can it be that on July 25th I was healthy (or thought I was) and July 26th I have stage four colon cancer? How long has this been growing in me and I didn't know it? How come I didn't have any symptoms? I can't tell you how many hours I have wracked my brain to figure out if I missed something, did I have some sign that I ignored? Maybe, I just can't remember.
It's just rotten filthy bad luck and nothing to be done. I've cried, prayed, talked, taken an Atavan, it all helps. But, at the same time none of it helps. It doesn't change anything, it makes me feel better, sure. But the cancer is still there.
I am trying so hard to remember what Julie said to me this afternoon, she really gets into trouble when she is living in the future. The present is not terrifying- it just is what it is. What is my present? Pat is helping Bennett to go to sleep. I am posting and getting ready to lie down for the evening. I should eat some of the soup Kate brought by, but my appetite is nowhere to be found. My present is feeling the physical leftovers of the fear I've been fighting all afternoon. My mouth tastes like dirty socks - that's from the chemo. I have a headache from holding myself together. Zeus needs a bath and it looks like we have a line on a new car.
If I let it, fear will steal my life from me. Honestly, I don't know how long my life will be, why would I give it up to something as useless as fear? As my friend Ruth says, "fear, I scoff at you, Ha Ha!" The thought of saying that right now makes me want to have a break down, so maybe I will leave the scoffing for later, when I am a little less teary and a little more steady on my feet, feelings-wise.
This all well and good, but what I really wanted to do was shake him by the lapels and yell. Yell anything, things like "am I going to live?" "will I die a very painful death?" "what the hell are you talking about, this can't be my body you are talking about."
Now we are getting somewhere. How could all of this be about me? Me, the one who has always been so strong and healthy? How can it be that on July 25th I was healthy (or thought I was) and July 26th I have stage four colon cancer? How long has this been growing in me and I didn't know it? How come I didn't have any symptoms? I can't tell you how many hours I have wracked my brain to figure out if I missed something, did I have some sign that I ignored? Maybe, I just can't remember.
It's just rotten filthy bad luck and nothing to be done. I've cried, prayed, talked, taken an Atavan, it all helps. But, at the same time none of it helps. It doesn't change anything, it makes me feel better, sure. But the cancer is still there.
I am trying so hard to remember what Julie said to me this afternoon, she really gets into trouble when she is living in the future. The present is not terrifying- it just is what it is. What is my present? Pat is helping Bennett to go to sleep. I am posting and getting ready to lie down for the evening. I should eat some of the soup Kate brought by, but my appetite is nowhere to be found. My present is feeling the physical leftovers of the fear I've been fighting all afternoon. My mouth tastes like dirty socks - that's from the chemo. I have a headache from holding myself together. Zeus needs a bath and it looks like we have a line on a new car.
If I let it, fear will steal my life from me. Honestly, I don't know how long my life will be, why would I give it up to something as useless as fear? As my friend Ruth says, "fear, I scoff at you, Ha Ha!" The thought of saying that right now makes me want to have a break down, so maybe I will leave the scoffing for later, when I am a little less teary and a little more steady on my feet, feelings-wise.
Monday, October 18, 2010
I Got It!
Nineteen days after my last treatment, I finally got some chemo. I am so glad to be sitting here with my pump that Bennett says sounds like a kitty meowing. I have been sneezing all evening, and remember the last time the same thing happened. Could it be another strange side effect?
There was a do or die moment - my WBC were only 1300, they usually want them to be 1500 for treatment, but because they turned me away last week, they made an exception. I am prepared to feel slammed down after this treatment, especially staring with lower WBCs. I am hoping not to and have a list of things I would like to get done tomorrow, but if my love quilt calls my name, I will be under it.
I have an appointment with Dr B on Wednesday. I heard the nurse tell him I was asking for Neulasta. Instead he lowered the does of Irinotecan. I cried. I don't like it when they "dose reduce." I know they are trying to find the most effective dose for MY body, but I don't want less medicine, I want this to be big medicine. My sage friend Ruth reminded me that sometimes the biggest tool is not the most effective - sometimes the little hammer is what you need to do the job with the most precision. I will work on adopting that philosophy.
What am I going to do tomorrow? Pick up meds, work on glass and walk the dog. These are my goals- if I can do them. Try to get enough calories. I must be doing something right because I weighed exactly what I weighed last week - 99kg. That is 217 - I started this process at 245, so I still feel like I need to keep the calories up up up. It's not that easy because I have a weird taste in my mouth, my mouth always feels dry and my belly is so picky. I had to eliminate tuna with mayo (protein and fat galore) because I realized it was the thing that was giving me so much gas that my belly made the bed springs shake. Good news though, is that polenta seems to agree with me and I love polenta. It's so strange what becomes important when you can't really eat. Honestly, I wouldn't eat half what I force down if I didn't have to. The Ensures are becoming my mainstays and that is saying something. I think I already said that I just think of them like medicine and that makes them go down easier. Now I just wish they didn't cost an arm and a leg...
Time for bed. I am praying for an easy sleep, energy for tomorrow, power and courage. Pray with me, will you?
There was a do or die moment - my WBC were only 1300, they usually want them to be 1500 for treatment, but because they turned me away last week, they made an exception. I am prepared to feel slammed down after this treatment, especially staring with lower WBCs. I am hoping not to and have a list of things I would like to get done tomorrow, but if my love quilt calls my name, I will be under it.
I have an appointment with Dr B on Wednesday. I heard the nurse tell him I was asking for Neulasta. Instead he lowered the does of Irinotecan. I cried. I don't like it when they "dose reduce." I know they are trying to find the most effective dose for MY body, but I don't want less medicine, I want this to be big medicine. My sage friend Ruth reminded me that sometimes the biggest tool is not the most effective - sometimes the little hammer is what you need to do the job with the most precision. I will work on adopting that philosophy.
What am I going to do tomorrow? Pick up meds, work on glass and walk the dog. These are my goals- if I can do them. Try to get enough calories. I must be doing something right because I weighed exactly what I weighed last week - 99kg. That is 217 - I started this process at 245, so I still feel like I need to keep the calories up up up. It's not that easy because I have a weird taste in my mouth, my mouth always feels dry and my belly is so picky. I had to eliminate tuna with mayo (protein and fat galore) because I realized it was the thing that was giving me so much gas that my belly made the bed springs shake. Good news though, is that polenta seems to agree with me and I love polenta. It's so strange what becomes important when you can't really eat. Honestly, I wouldn't eat half what I force down if I didn't have to. The Ensures are becoming my mainstays and that is saying something. I think I already said that I just think of them like medicine and that makes them go down easier. Now I just wish they didn't cost an arm and a leg...
Time for bed. I am praying for an easy sleep, energy for tomorrow, power and courage. Pray with me, will you?
Sunday, October 3, 2010
Mind Full, Body Blank
What a shift today. I woke up fully aware this morning, but so tired. Tired is not even in the same league as how I felt. Exhausted, fatigued? None of it is right. I heard the voice of Sue the chemo nurse, don't spend all day in bed. So I got up and walked the dog. My ears were blown and that makes me feel like I can't really see or hear, so that was pretty uncomfortable. Plus, the walk was brief. I got home and played with B for about an hour and had to take a two hour nap. Pat took B to Aunt Julie's while I continued to spend the day in bed. Mostly giving myself a hard time for being in bed. I wrenched myself out for about 30 minutes, which I spent shakily cutting glass in the studio. That sent me back to bed for another nap. At that point I called my mom and spent the rest of the time in bed, reading, chatting and feeling like it just had to be okay that I needed to be there, in the damn bed.
I would be there now but Bennett is sleeping there. I have been spending the nights in the back room because Bennett has a cold - and Pat is working is that room. 4000 square feet and no place to go. No, really, I am being melodramatic. I want to post. I want to post to a blog called "My Cancer Year." The premise being I tried having cancer for a year, then gave it up or adopted some parts of my experience into my life, but cut some of the harder bits out. Like this is voluntary - and at the end I get a fat book contract.
No such luck. This business has been going on for only about 2.5 months and I am already pretty sure what bits I would cut out. The cancer would go, for sure. The chemo right after that. I would keep the people at UMASS Memorial because they are so nice and attentive. I would also keep all of the reflexology and the ways people are super nice to me. I would also make sure not to keep the fatigue and all the millions of pills.
Oh, and the Ensure would have to go. My god, how gross is that stuff? I have been drinking two a day to up my calories. It tastes like a bad milkshake with a multivitamin crushed in there. I am very thin, at least for me. My smallest pants fall off me and I need to get a belt soon or the world will see the state of my sad sad huge underpants. Am I getting too personal?
Tomorrow is Monday. Pat will be home in the afternoon, so I don't have to worry about the long day with B on my own. We need someone to come live with us. Why, I ask, are all of my nieces and nephews so responsible and stable? If only there was one who needed a place to be for a few months, who would be willing to help out and just be part of this craziness? Any ideas?
I am going to pray for tomorrow to be filled with light, enough physical and mental strength to get me through the day, and a good appetite. Pray with me, will you?
I would be there now but Bennett is sleeping there. I have been spending the nights in the back room because Bennett has a cold - and Pat is working is that room. 4000 square feet and no place to go. No, really, I am being melodramatic. I want to post. I want to post to a blog called "My Cancer Year." The premise being I tried having cancer for a year, then gave it up or adopted some parts of my experience into my life, but cut some of the harder bits out. Like this is voluntary - and at the end I get a fat book contract.
No such luck. This business has been going on for only about 2.5 months and I am already pretty sure what bits I would cut out. The cancer would go, for sure. The chemo right after that. I would keep the people at UMASS Memorial because they are so nice and attentive. I would also keep all of the reflexology and the ways people are super nice to me. I would also make sure not to keep the fatigue and all the millions of pills.
Oh, and the Ensure would have to go. My god, how gross is that stuff? I have been drinking two a day to up my calories. It tastes like a bad milkshake with a multivitamin crushed in there. I am very thin, at least for me. My smallest pants fall off me and I need to get a belt soon or the world will see the state of my sad sad huge underpants. Am I getting too personal?
Tomorrow is Monday. Pat will be home in the afternoon, so I don't have to worry about the long day with B on my own. We need someone to come live with us. Why, I ask, are all of my nieces and nephews so responsible and stable? If only there was one who needed a place to be for a few months, who would be willing to help out and just be part of this craziness? Any ideas?
I am going to pray for tomorrow to be filled with light, enough physical and mental strength to get me through the day, and a good appetite. Pray with me, will you?
Monday, September 13, 2010
A Little Bit of Pain and Anger
I am pretty much a mess today. I feel awful and tired. I am sitting on the floor trying to get some gas out- but it is so stubborn. My belly feels like there are tiny little mice with sharp teeth and claws running around in there. The docs said GasX, it doesn't really help. I read online that there is the kind of gas that you burp and the kind that is lower and that controlling the lower kind is difficult. No kidding. Oh, and the website (for a cancer hospital, I can't remember which one) also mentioned that it can be painful. Double no kidding.
This is not to say that I am online doing research about cancer- just chemo related gas. I did catch something about stages of colorectal cancer and that sent me into a small head spin. That is when I got out some fennel seed and started chewing, hoping against hope that it would work on the lower kind of gas. Because I want the gas to go away, I don't want to keep taking pain killers.
I haven't really been able to eat either. I was just going to say that I am not nauseous, but I am not sure that's true. Everything smells a little off and thinking about eating just makes me think "ewwww."
I haven't even mentioned how angry I am today. I am pretty mad. It seemed like my life was going pretty well, and bam! Now I can barely take care of Bennett. Monday is my day with her now that she is in school Tuesday, Wednesday and Thursday. And we had to call Aunt Liz to come get her, I just couldn't manage. That pisses me off. And you know what? it's not the cancer, it's the chemo. It feels really wrong to be mad at the chemo, when that is what is saving my life. You'd think I'd be normal and be mad at the cancer. Well, until a few short months ago, we seemed to be getting along just fine.
How twisted is this? It is how I feel though. I have at least four more chemo rounds to go - that's just until the next scan. My plan is for the docs to be so shocked that they 1) see only spontaneous remission, 2) order surgery to take out the little bits that remain. Let's all pray for #1, with #2 a good fall back.
That was my imperfect day. I can't even pep talk myself into feeling any better. I think it's time to do a little gratitude check with God. I'll keep you posted.
This is not to say that I am online doing research about cancer- just chemo related gas. I did catch something about stages of colorectal cancer and that sent me into a small head spin. That is when I got out some fennel seed and started chewing, hoping against hope that it would work on the lower kind of gas. Because I want the gas to go away, I don't want to keep taking pain killers.
I haven't really been able to eat either. I was just going to say that I am not nauseous, but I am not sure that's true. Everything smells a little off and thinking about eating just makes me think "ewwww."
I haven't even mentioned how angry I am today. I am pretty mad. It seemed like my life was going pretty well, and bam! Now I can barely take care of Bennett. Monday is my day with her now that she is in school Tuesday, Wednesday and Thursday. And we had to call Aunt Liz to come get her, I just couldn't manage. That pisses me off. And you know what? it's not the cancer, it's the chemo. It feels really wrong to be mad at the chemo, when that is what is saving my life. You'd think I'd be normal and be mad at the cancer. Well, until a few short months ago, we seemed to be getting along just fine.
How twisted is this? It is how I feel though. I have at least four more chemo rounds to go - that's just until the next scan. My plan is for the docs to be so shocked that they 1) see only spontaneous remission, 2) order surgery to take out the little bits that remain. Let's all pray for #1, with #2 a good fall back.
That was my imperfect day. I can't even pep talk myself into feeling any better. I think it's time to do a little gratitude check with God. I'll keep you posted.
Friday, September 10, 2010
I Should Have Posted Last Night
I really should have posted last night. Instead I got sucked into the idea that watching some TV on Netflix would be more relaxing. Well, I dipped into an episode of Nip/Tuck, which is usually about two womanizing, ultra-rich, plastic surgeons and their adventures. This episode, of course, had to be about one of the men finding out he had stage-two breast cancer and his response - more womanizing, breaking things, drinking too much, screaming a lot about how he was dying. Not a good show for me to watch. I start to get a little wigged out when people talk about stages of cancer and I remember that the cancer in my non-TV body that is now being pummeled by chemo is stage four. I get a little jealous of people with cancer at less than stage four.
It's all very bizarre.
Then Pat and I decided that we should take the recommendation to watch Weeds, a show about a newly widowed woman who deals pot in her tony suburb. It's a good show, this episode just happened to be all about how the kids were adjusting to the loss of their dead father. At this point, Pat and I just got up and went to bed.
I should have posted last night. That is the moral of this story. TV, movies, and most books have some sort of event, and by event, you know what I mean. Some horrible tragic hurt that the story revolves around. I just don't need that at all. I have my own event that I am trying to manage. With a goal of managing it gracefully when I can. It doesn't always happen the way I want, but I sure give it the best try I can.
I had a lovely evening with Bennett last night. Pat was at her Tai Chi class, and I got to put B to bed by myself. She loves her new school so much, I can tell because she has been telling lots of stories. We read books, I told her a story, she told me about five stories, then sang me a song that she made up. It went like this "oh my heart, oh my heart, my sweet little baby, go to sleep." I just about burst into tears of mixed up joy and sadness. What a gift to have such a life around me.
And that's the thing I have to remember when I am trying to escape into TV. The only real place worth escaping to is my real life. That is where the joy and relief come from. To talk to the people I love, have a little prayer and light, that's where it's really at. Can I hear an amen? Amen.
Tuesday, September 7, 2010
This Was Not Good Bye
One of the traumatic things that happened, in the support group I went to, was a participant kept telling me that no matter what when I saw my sisters when they visited, it was going to be a kind of final good bye. That each of my sisters was visiting in such a quick succession was not a show of support, but in his mind some sort of last farewell. No matter what I told him about how they all promised to come when I needed them, that it was about fun and we were going to play games and eat great food, it didn't make one bit of difference, he was not to be swayed. Of course he was projecting his giant load of crap onto me, but it really freaked me out.
I told this story to my sister, Joanne, today. She hugged me and said, "no way is this good bye." And I believe. In fact when she and her son left I was super sad to see them go, but with a sadness that comes of the true joy of loving someone and experiencing their absence. My niece too, but she will be back in a couple of weeks, when Mary comes to visit. Another sister who is not coming to say goodbye for ten days.
Bennett, of course, is bereft of her cousins leaving. Gentle and lovely Libby and always willing to go poop hunting Tim. She was just crying for her cousins, literally. She knows a good thing when she sees it.
I am gearing up for chemo tomorrow. I feel pretty confident my white blood cells (WBC from now on) are better. I got a mosquito bite this morning and it actually turned red and swelled up for a time. And it itched. All good things. Trust me on this. Liz is going to pick me up at 6 am, which means she has to leave her house at some terrible time, which means she is a good good person, to get me to the lab at 7:30. See the doc at 8 and if all is well, and it better be, 8:30 in the chemo chair.
Keep those messages of love, light and prayer coming my way. I am going to need every ounce I can get for round two - ding! ding!
I told this story to my sister, Joanne, today. She hugged me and said, "no way is this good bye." And I believe. In fact when she and her son left I was super sad to see them go, but with a sadness that comes of the true joy of loving someone and experiencing their absence. My niece too, but she will be back in a couple of weeks, when Mary comes to visit. Another sister who is not coming to say goodbye for ten days.
Bennett, of course, is bereft of her cousins leaving. Gentle and lovely Libby and always willing to go poop hunting Tim. She was just crying for her cousins, literally. She knows a good thing when she sees it.
I am gearing up for chemo tomorrow. I feel pretty confident my white blood cells (WBC from now on) are better. I got a mosquito bite this morning and it actually turned red and swelled up for a time. And it itched. All good things. Trust me on this. Liz is going to pick me up at 6 am, which means she has to leave her house at some terrible time, which means she is a good good person, to get me to the lab at 7:30. See the doc at 8 and if all is well, and it better be, 8:30 in the chemo chair.
Keep those messages of love, light and prayer coming my way. I am going to need every ounce I can get for round two - ding! ding!
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