Today was a good day all in all. I got up and took Bennett to school, I had to pause there to remember if that was true. The only problem was I woke up exhausted and in pain. I am beginning to believe this is the new way things are going to be. More pain, less energy. I have some questions for Dr B. to help me get rid of some of the lingering effects of the chemo, and that might help me have some more energy. I am not sure there is anything that Dr B can do about the flashes of neuropathy that I still have in my feet. Or the complete lack of interest in ice cream. But my nose is still bleeding a lot and there are other things that I will not discuss here.
I also have to find out who my doctor will be, get a letter for the airline that says that I am okay to fly, and he is going to want to talk about the PET scan. I already talked about it with the doctor from Dana Farber, so I hope there will not be any additional surprises. Did I tell you that Ruth is coming with me.?One of the reasons Ruth is coming with me is Pat was afraid that if she went, she might punch Dr B. She is very mad at him, sure that he did something wrong. I asked the doctor at DF what the protocols were for colon cancer and she told me that Dr B did everything that she would have done. So that makes me not mad at him. I never liked him, and certainly would never have him over for tea, but I feel like he did the right things medically.
We are going to NY on Friday. We are staying at a boutique hotel in my old neighborhood (which was full of crack and hookers when I lived there, sorry Mom). We are excited to see those babies and Jessica and also Bob and Jim. B&J are doing something seldom done - they are travelling to Brooklyn to see us. That is really nice. I want the weekend to be as mellow as possible. Because I am tired all the damn time.
Today I took what I thought would be a short nap, I went to bed at 1:30, Pat woke me up at 2:45 (15 minutes after I was supposed to leave to get Bennett), she went to pick up Bennett and lo and behold another hour passed while I snoozed. Bennett finally handed me some pants and told me it was time to get out of bed. Must be pretty bad if my 4 year old is getting my pants for me...
Pat and I went to Trader Joe's this morning, and did other mundane things like go to the bank and tattoo parlor. Huh!?! Yep, we made an appointment this morning to get tattoos because I think it will be easier for me to die if I have P & B's names on me, then Pat decided she wanted my name on her. I told her she shouldn't because of her next girlfriend and I think that made her even more determined. Anyway, the tattoo people never showed up, so Pat remains ink-free and I will have to try a new parlor.
Another cool thing that Pat did was get a facial at the Cancer Connection. She literally looks years younger. I will have reflexology later in the week. I had the facial once. I made my face feel very moist. And that can't be bad, right?
Monday, January 9, 2012
Sunday, January 8, 2012
Where to Start?
Pat was nice as can be and let me sleep until 10. I didn't mean to fall back to sleep when we all woke up around 8, but I did. Out like a light. Then off to Ruth and Theo's for brunch with their good friend, Morgan. We had a feast - Theo is great at putting many many yummy things on the table that make the main dishes (buckwheat pancakes and eggs) taste even better. Pat and I sat on their couch for most of the day and just hung out. It was very pleasant. I will be doing that again soon.
Then we headed home without Bennett. And we quickly used the time to clean the house. Lucky because last night, when I woke up in the middle of the night, I asked myself who's house could this be? It was so messy. Now all the crap is put away, we had to get a bigger bin for all the Barbie stuff, and Pat even did a little mopping while I did the bills. Amazing what you can get done without the kid around. Then Pat made dinner for all of us. Delicious brisket, roast potatoes and steamed carrots. Yum. The brisket was so tender - her cooking skills get better every day.
Ruth is here now - bathing Bennett. I have been trying to keep still because of the pain in my abdomen, tomorrow we have a full day that starts with bringing B to school. I have mixed feelings about going to see Dr B on Tuesday. I am very grateful that I don't have to get chemo, but I also don't really like his glass half empty way of delivering news. Ruth is coming with me, so that will help. She is really good at remembering details and fun on the drive there and back. So, as Nancy would say there is only this moment, and no need to think about my appointment with Dr B. I will try my best to remember that. At least I know that he is not going to tell me again, for the first time, that I have cancer. That's been done, and never has to happen again.
Then we headed home without Bennett. And we quickly used the time to clean the house. Lucky because last night, when I woke up in the middle of the night, I asked myself who's house could this be? It was so messy. Now all the crap is put away, we had to get a bigger bin for all the Barbie stuff, and Pat even did a little mopping while I did the bills. Amazing what you can get done without the kid around. Then Pat made dinner for all of us. Delicious brisket, roast potatoes and steamed carrots. Yum. The brisket was so tender - her cooking skills get better every day.
Ruth is here now - bathing Bennett. I have been trying to keep still because of the pain in my abdomen, tomorrow we have a full day that starts with bringing B to school. I have mixed feelings about going to see Dr B on Tuesday. I am very grateful that I don't have to get chemo, but I also don't really like his glass half empty way of delivering news. Ruth is coming with me, so that will help. She is really good at remembering details and fun on the drive there and back. So, as Nancy would say there is only this moment, and no need to think about my appointment with Dr B. I will try my best to remember that. At least I know that he is not going to tell me again, for the first time, that I have cancer. That's been done, and never has to happen again.
Saturday, January 7, 2012
Sit, Sit, Sit!
Tee day had a rough start for me, the house felt just covered with junk dragged here and there by Bennett. I tripped on a bin full of Barbie stuff, Stepped on a Barbie high heal, accidentally kick a little chair that had about 100 little pieces of Barbies paraphernalia - spraying them all over the house. I just had to go back to bed. And I found myself just bawling and like Bennett says "I just can't stop crying." Bennett sat with me and wiped my nose and eyes and petted me. I just didn't know what to do. I didn't like falling apart in front of Bennett. Or Pat for that matter.
Mary (and her family) is moving to Fiji in August. I found out last night and I this is the first time that it is starkly illustrated that life goes on. And that I will probably not know how this adventure turns out. It's very sad for me. But, I remind myself, that inevitably someone I know will get married or pregnant, or something extraordinary and I won't know how those things will end up like either. So, like another moment when I feel like the clown has jumped out of the closet and hit me on the head with a skillet, I will figure out what to day by day. That's all that can be done.
Bennett update. Last night she asked me (again) if I was going to be the first one to die in the family. I said yes and when she asked why, I told her I had a sickness that was going to make me die first. She said if people keep dying then there won't be anyone left on the planet. I told her that people die every day and that people are born every day (It was more involved than that, but you get the idea). She said Oh, that's what happens, people die and then they are born again in another body. So, Bennett invents reincarnation. I told her that some people believed that and it was called reincarnation. Then she looked at me and said "oh mom, that is just like the sun setting and the moon coming up."
Brilliant.
Mary (and her family) is moving to Fiji in August. I found out last night and I this is the first time that it is starkly illustrated that life goes on. And that I will probably not know how this adventure turns out. It's very sad for me. But, I remind myself, that inevitably someone I know will get married or pregnant, or something extraordinary and I won't know how those things will end up like either. So, like another moment when I feel like the clown has jumped out of the closet and hit me on the head with a skillet, I will figure out what to day by day. That's all that can be done.
Bennett update. Last night she asked me (again) if I was going to be the first one to die in the family. I said yes and when she asked why, I told her I had a sickness that was going to make me die first. She said if people keep dying then there won't be anyone left on the planet. I told her that people die every day and that people are born every day (It was more involved than that, but you get the idea). She said Oh, that's what happens, people die and then they are born again in another body. So, Bennett invents reincarnation. I told her that some people believed that and it was called reincarnation. Then she looked at me and said "oh mom, that is just like the sun setting and the moon coming up."
Brilliant.
Thursday, January 5, 2012
No Room at the Inn
So the decision has been made, and I didn't have to make it. There is no room for me on the Phase 3 trial at Dana Farber. They have four slots (it is a national study with many institutions getting a small number of slots), and I am second on the waiting list. They are applying for more slots, but the woman I spoke to said she was not hopeful. I should hear from them next week. So there we have it.
Mostly I feel fine about it. I called the herbal healer and left a message, so we will see what she has to offer. I had reflexology today and it reminded me that I need to seek out people who will soothe my body during this process, because I believe it is healing.
There is not much to say except here we are on another part of the journey with only a little idea how to proceed. I guess we will learn at every step.
Bennett is really struggling. She knows that I am going to die. She talks about it quite a bit. Today at school, during lunch, the teachers were telling the kids that someone's grandfather died and B burst into tears and said I don't want Momo to die. Then tonight she sang me a song that went like this "I don't Mommy to die, when you die you die forever." It was really heartbreaking. She also asked me today would I die while I was 46 or 47. I just try to maintain my calm demeanor and tell her the truth. You do die forever, I don't know what number I will be when I die, that I am going to die first. Etc. When I try to get her to talk about it, she doesn't want to. She only wants to talk about it when I am not prepared- or at least that's how it feels.
So to cheer ourselves up we are going to NYC in a couple of weeks. Hopefully the weather will hold. We are going to hang out with Jessica and her gorgeous babies and Bob and Jim. It should be fun. Bennett is already excited. Me too.
Mostly I feel fine about it. I called the herbal healer and left a message, so we will see what she has to offer. I had reflexology today and it reminded me that I need to seek out people who will soothe my body during this process, because I believe it is healing.
There is not much to say except here we are on another part of the journey with only a little idea how to proceed. I guess we will learn at every step.
Bennett is really struggling. She knows that I am going to die. She talks about it quite a bit. Today at school, during lunch, the teachers were telling the kids that someone's grandfather died and B burst into tears and said I don't want Momo to die. Then tonight she sang me a song that went like this "I don't Mommy to die, when you die you die forever." It was really heartbreaking. She also asked me today would I die while I was 46 or 47. I just try to maintain my calm demeanor and tell her the truth. You do die forever, I don't know what number I will be when I die, that I am going to die first. Etc. When I try to get her to talk about it, she doesn't want to. She only wants to talk about it when I am not prepared- or at least that's how it feels.
So to cheer ourselves up we are going to NYC in a couple of weeks. Hopefully the weather will hold. We are going to hang out with Jessica and her gorgeous babies and Bob and Jim. It should be fun. Bennett is already excited. Me too.
Wednesday, January 4, 2012
A Mixed Bag
I had a very hard time leaving my bed this morning. I woke up in some kind of funk that made me believe that I was only safe in bed and not out of bed. I finally asked God to help me out of bed and, I am telling you it was like a miracle, I suddenly wasn't afraid anymore and I just got out and started my day. Thank goodness starting my day was getting myself to Northampton and talking to Ruth on the way. My friend Ruth is very wise and really helped me remember that staying in bed like a turtle is not the end of the world. It's just something a person needs to do every once and awhile.
Then I got to see Nancy. She helped me realize that I not safer in my bed, I am giving up participating in my life. My precious life. She said I stayed in bed as long as I needed to and then got out. No judgement. That goes along with her belief that I am just as tired as I am, and there is no guilt about it. She is very good. She also put me onto a herbal healer in Amherst. I will call her tomorrow. I haven't heard back from the Phase Three trial people, and the longer they take to get back to me, the more I realize I don't really want to do it. I am just so tired of being sick sick sick. You know, from the chemo. I am also tired of having cancer, but that doesn't seem as tiresome as more chemo.
Anyway, I feel a lot better today. I still have some pain, but it's much less. I didn't take a Percocet yesterday, it was a Vicodin. I looked at the finer writing on the bottle this morning. It doesn't really matter because it worked and that's all I needed. I have an appointment with Dr B next week. I am going to drill him about pain management and who is going to keep an eye on me for this point forward. I am certainly not going back to my Primary Care Physician, and it might be a little late in the game to get a new doc. Unless it's time to move on to someone who specializes in palliative care. I might be getting ahead of myself. This is why I need to talk to Dr B.
Bennett asked me today if I was going to be the first one in the family to die. I said yes. She cried and said that she did not want me to die. I told her that I didn't want to die. Then she said that she wins because she is going to die last. I told her that was a great contest to win and I was glad she was the winner.
Then I got to see Nancy. She helped me realize that I not safer in my bed, I am giving up participating in my life. My precious life. She said I stayed in bed as long as I needed to and then got out. No judgement. That goes along with her belief that I am just as tired as I am, and there is no guilt about it. She is very good. She also put me onto a herbal healer in Amherst. I will call her tomorrow. I haven't heard back from the Phase Three trial people, and the longer they take to get back to me, the more I realize I don't really want to do it. I am just so tired of being sick sick sick. You know, from the chemo. I am also tired of having cancer, but that doesn't seem as tiresome as more chemo.
Anyway, I feel a lot better today. I still have some pain, but it's much less. I didn't take a Percocet yesterday, it was a Vicodin. I looked at the finer writing on the bottle this morning. It doesn't really matter because it worked and that's all I needed. I have an appointment with Dr B next week. I am going to drill him about pain management and who is going to keep an eye on me for this point forward. I am certainly not going back to my Primary Care Physician, and it might be a little late in the game to get a new doc. Unless it's time to move on to someone who specializes in palliative care. I might be getting ahead of myself. This is why I need to talk to Dr B.
Bennett asked me today if I was going to be the first one in the family to die. I said yes. She cried and said that she did not want me to die. I told her that I didn't want to die. Then she said that she wins because she is going to die last. I told her that was a great contest to win and I was glad she was the winner.
Tuesday, January 3, 2012
Modern Pharmaceuticals Are Good
I have a lot to post about today. First I would like to say that the trip home was great. I am not sure that I made that clear in my last post. Bennett was the first-class traveller that she is (in coach, of course), the food was good, the seats in the plane were the very last row (very wiggly and bumpy). We all made it home in time to eat the delicious pears, cheese and nuts that Ruth and Theo left for us. It was perfect. To bed for all of us before 7.
Yesterday I slept in late. I don't remember what time I was out of bed, but it was way too late. Probably something like 5pm England time. We had a nice mellow day, Ruth and Theo came over and Bennett's Christmas continued. I am worried she is going to thing that the tradition is to get presents over a 20 day period. And Liz and Julie are coming over tonight with more presents! Holy moly.
We took the tree down today. It was very dry. Bennett had a major cry over Spingey being put on the street. She thought it was cruel to put it outside, at least we should keep it in the basement.
And at that point the pain started. Something very bad in the right abdomen. I tried to just live with it, but when I actually started yelling out every once and awhile because I couldn't stop myself, I took myself to bed. Then I talked to Ruth, who asked me why I wasn't doing what Dr B would want me to do - take some pain meds. Excellent point. So I took a percocet and 20 minutes later was fine. I have used this pain as an excuse to curl up in bed with Bennett most of the day watching movies and snacking. I can still feel the pain, but I am not yelling anymore.
Today is my one-year anniversary of my surgery. I made it an entire year without going to the hospital - I guess that will be true in 5 days, because I was in the hospital for 5 days. And when I came home last year, we had a huge snow storm. This year, nothing except that crazy Halloween storm.
Anyway, one more thing. I got an itemized bill from UMASS Memorial for the chemo I had during the month of October. This was the first time they sent one - I am responsible for the copay which is $40. Anyway it cost $93,000 for one month of chemo. Before the drugs stopped working, I had about 30 treatments, 7 scans, surgery, etc, etc. I am totally blown away by this amount of money. It seems dirty and criminal in some way. One vial of Oxoliplatin is $16,000. Someone is making some big money on people who are really sick.
So really, I am so grateful the state of MA has insurance available to me. I will never again balk at paying my $91 a month premium. It's got to be the bargain of the century.
Yesterday I slept in late. I don't remember what time I was out of bed, but it was way too late. Probably something like 5pm England time. We had a nice mellow day, Ruth and Theo came over and Bennett's Christmas continued. I am worried she is going to thing that the tradition is to get presents over a 20 day period. And Liz and Julie are coming over tonight with more presents! Holy moly.
We took the tree down today. It was very dry. Bennett had a major cry over Spingey being put on the street. She thought it was cruel to put it outside, at least we should keep it in the basement.
And at that point the pain started. Something very bad in the right abdomen. I tried to just live with it, but when I actually started yelling out every once and awhile because I couldn't stop myself, I took myself to bed. Then I talked to Ruth, who asked me why I wasn't doing what Dr B would want me to do - take some pain meds. Excellent point. So I took a percocet and 20 minutes later was fine. I have used this pain as an excuse to curl up in bed with Bennett most of the day watching movies and snacking. I can still feel the pain, but I am not yelling anymore.
Today is my one-year anniversary of my surgery. I made it an entire year without going to the hospital - I guess that will be true in 5 days, because I was in the hospital for 5 days. And when I came home last year, we had a huge snow storm. This year, nothing except that crazy Halloween storm.
Anyway, one more thing. I got an itemized bill from UMASS Memorial for the chemo I had during the month of October. This was the first time they sent one - I am responsible for the copay which is $40. Anyway it cost $93,000 for one month of chemo. Before the drugs stopped working, I had about 30 treatments, 7 scans, surgery, etc, etc. I am totally blown away by this amount of money. It seems dirty and criminal in some way. One vial of Oxoliplatin is $16,000. Someone is making some big money on people who are really sick.
So really, I am so grateful the state of MA has insurance available to me. I will never again balk at paying my $91 a month premium. It's got to be the bargain of the century.
Sunday, January 1, 2012
Home Again, Home Again, Jiggity-Jig
Flying is amazing. One minute you are in England and the next you're in your own home, so grateful for all the familiar things that make life easy and sweet. We had a great time in England. Mary and John were great hosts, and Alex gave up his room for us. And Anna gave up her room for Alex. Everyone was generous. And I am so glad we stayed an extra day - we went for a lovely walk, had one of Mary's famous dinners, with apple crumble and clotted cream for dessert.
It was hard to say goodbye. I mean it. This was the first time where I felt like I was saying goodbye and maybe for good. I don't get to see John and Alex that much and I felt a deep pang of sorrow. It reminded me of that guy I met in the one support group meeting I went to - his thought every goodbye was Goodbye with a capital G. I don't want to be like that, but I also have to be realistic. If that is realistic, who am I to know.
So we are home. What a wonderful gift that trip was. I decided not to pay attention to anything tonight. No phone, no mail, no to do lists. Just being. Watching Bennett play with her Barbies and try to figure out what Barbies wear to bed. She is still working on that one. We might have to go pajama shopping tomorrow. Sitting next to Pat while she reads her new book on how to cultivate wild mushrooms. All the while wrapped up in the cozy orange blanket that Joanne sent when she found out the drugs stopped working. It's my hug blanket. It's lovely.
Who knows what tomorrow will bring. What time will we even wake up? I'll keep you posted - as always.
It was hard to say goodbye. I mean it. This was the first time where I felt like I was saying goodbye and maybe for good. I don't get to see John and Alex that much and I felt a deep pang of sorrow. It reminded me of that guy I met in the one support group meeting I went to - his thought every goodbye was Goodbye with a capital G. I don't want to be like that, but I also have to be realistic. If that is realistic, who am I to know.
So we are home. What a wonderful gift that trip was. I decided not to pay attention to anything tonight. No phone, no mail, no to do lists. Just being. Watching Bennett play with her Barbies and try to figure out what Barbies wear to bed. She is still working on that one. We might have to go pajama shopping tomorrow. Sitting next to Pat while she reads her new book on how to cultivate wild mushrooms. All the while wrapped up in the cozy orange blanket that Joanne sent when she found out the drugs stopped working. It's my hug blanket. It's lovely.
Who knows what tomorrow will bring. What time will we even wake up? I'll keep you posted - as always.
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