Later today I'll be heading into the hospital to have lab work done and see the oncologist. I'll be sure to tell her I think the C Diff has returned. I might post later tonight how that went.
Meanwhile, yesterday I wrote my thirty facts about myself. Later I'll get Mark to post them on Facebook because I have no idea how to do that. It's easy to post them here.
When I was writing them, I started off well, but then I felt that it would be very hard to get to 30. When I hit 18, I got happy thinking I only needed 2 more. Oops. Then I remembered I needed 30 not 20!! Finally when I got finished, I realized I could have thought of more than 30, but then it would just get too boring. So 30 seemed right. Several of you have said that you were challenged to write your own lists. My sister Cindy did one yesterday, and Kip has also posted his on Facebook. If anyone else writes a list of 30 facts, please send me a copy by email or any other way you can think of. I'd love to read them.
Thirty Facts About Becky Silverstein
1. I married Mark Silverstein, my b’shert, my best friend, my lover, and my helper. This was the best decision I ever made in my life.
2. I converted to Judaism the week before my wedding. I have never regretted that for a minute. It has defined who I am and what I do ever since.
3. My children fulfill me in ways that are difficult to explain. I love them so much it hurts, and I am proud of them every day.
4. If I had my dream world, I would live in a beautiful house with Evey and her family in the house next door on one side and Lowell and his family on the other side. I’m pretty sure this would NOT be their dream world.
5. I like orange and peach colors and flavors.
6. I don’t like mint flavor in my coffee or my ice cream.
7. I have eaten a half gallon of ice cream out of a carton all at once more than once. Sad, but true.
8. Avocados, olives, ketchup, mustard, vinegar and all salad dressings have no reason to exist.
9. When Mark and I first met, we had the same car, Dodge Dart. Mine was orange and his was purple (his favorite color). We have often bought the same car again, including right now.
10. I hate cancer, especially MINE!
11. I have struggled with my weight from my earliest memories. I’m disappointed that cancer has sidetracked what I thought was my final time to deal with it. I really thought I had learned what to do and how to behave. When my treatment is finished, I will have to start over again.
12. I love dogs and cats, especially when I have had both at the same time.
13. I still think about my Siamese cat Sirikit. She was a very special pet that I got when I was 12 and had for 18 years.
14. I wish I had appreciated our dog Ace more when I had him. He was such a great dog, and I don’t think we gave him the love and attention he deserved.
15. There were years when I hated being a music teacher in the public schools and wanted to quit and go into another line of work.
16. I’m glad I never quit my music teacher job because there were years that I loved it and did great work, especially the last 10 years. It also has allowed me to have a good retirement pension.
17. I loved directing the Mishkan Torah choir. It allowed me to grow as a conductor and deepen my friendships with the people in the choir. I get extremely nervous when I have to sing solo, but I never, EVER get nervous before or during a choir concert. There is something completely magical about standing in front of a group of singers, no matter what their ages, that just makes me very happy. I always enjoy conducting concerts!
18. I didn’t realize how much I missed singing until I joined the Central Maryland Chorale and Goddard’s MAD productions. I’m grateful to have had a few years to work with those talented people.
19. I have never really gotten over the death of my parents. I think of them every day and wish that they could have seen Lowell and Evey grow up.
20. I love cruising. I have gone to Alaska twice, across the Pacific Ocean to and around Hawaii, through the Panama Canal, and many Caribbean trips. I hope to do many more. If I had all the money in the world, I would take a round-the-world cruise lasting four months and visit so many beautiful exotic places. Unfortunately Mark only likes being on a ship for about 3 weeks and I DON’T have all the money in the world, so I’m pretty sure I will not ever do this.
21. I have a dream of flying around the world, visiting all the Disney parks. I might be able to talk Mark into this one!
22. I loved my trip to Israel, but I want to go back and see so much that we didn’t have time to do.
23. I love my extended family. As Katie said, they are ABAZING. (You had to be there for that one.)
24. I like to flip the channels on the TV. This drives Mark crazy. Sorry.
25. I like all kinds of music and listen to many different styles. Some favorites are country, sixties and seventies classic rock, classical, and Broadway.
26. I really, really LOVE going to live theater, especially musicals. I hope there are some good opportunities for this in the Orlando area.
27. I play guitar left handed not just because I AM left handed but because I wanted to be like Paul McCartney!
28. I love voting and have never missed an election. Even this year Mark and I were able to vote by mail in the local Florida elections.
29. I love to drive and hope to take many more driving vacations with Mark. He is great at entertaining me while I drive.
30. I love traveling by train. I’m glad Mark and I have been able to go across country twice by train.
Tuesday, November 30, 2010
Monday, November 29, 2010
Interesting times
Mark and I really enjoyed our visit yesterday with Nadine and Dick. As always, I am so impressed that people are willing to drive up this far to visit us. We enjoyed conversation and pie! Thanks for the visit.
Today I had a podiatry appointment to trim my toenails. I can't do it myself because I always make a mess of it, and I can't go to the nail salon because of the chemo. I had an appointment for 1:20, or so I thought. We planned the rest of our errands around making it to the doctor's office at 1:20 then heading home. Oops. At 12:15 they called and asked why I had missed my 11:20 appointment. Oh my goodness! They were very gracious and rescheduled it for 3:20, so Mark and I had a long lunch out at Qdoba's and then sat in the parking lot of the mall napping in the car for an hour. Crazy. It also meant a very long drive home in the dark with heavy rush hour traffic. Not fun.
I am somewhat disturbed with one turn of events. I woke up this morning at 4:45 a.m. with diarrhea. I have been in the bathroom 9 times so far today since then. I really feel like the C diff has returned. I was warned that it is hard to conquer. In fact, at shul on Saturday, my friend Lois told me she was worried for me because she thought I would get it again. I guess she was somewhat prophetic. At least I have a scheduled appointment with the oncologist tomorrow at noon. I'll be sure to tell her about this. I'm also trying desperately to drink a lot to keep from getting dehydrated. I hope I get through the night without a fever or anything bad happening. I'd like to see the doctor in her office tomorrow as opposed to the ER tonight.
I also wrote the first draft of my 30 facts about me. I'm not sure it's ready for publication yet, but I'm warning you that it will be coming on Facebook and the blog pretty soon!
Today I had a podiatry appointment to trim my toenails. I can't do it myself because I always make a mess of it, and I can't go to the nail salon because of the chemo. I had an appointment for 1:20, or so I thought. We planned the rest of our errands around making it to the doctor's office at 1:20 then heading home. Oops. At 12:15 they called and asked why I had missed my 11:20 appointment. Oh my goodness! They were very gracious and rescheduled it for 3:20, so Mark and I had a long lunch out at Qdoba's and then sat in the parking lot of the mall napping in the car for an hour. Crazy. It also meant a very long drive home in the dark with heavy rush hour traffic. Not fun.
I am somewhat disturbed with one turn of events. I woke up this morning at 4:45 a.m. with diarrhea. I have been in the bathroom 9 times so far today since then. I really feel like the C diff has returned. I was warned that it is hard to conquer. In fact, at shul on Saturday, my friend Lois told me she was worried for me because she thought I would get it again. I guess she was somewhat prophetic. At least I have a scheduled appointment with the oncologist tomorrow at noon. I'll be sure to tell her about this. I'm also trying desperately to drink a lot to keep from getting dehydrated. I hope I get through the night without a fever or anything bad happening. I'd like to see the doctor in her office tomorrow as opposed to the ER tonight.
I also wrote the first draft of my 30 facts about me. I'm not sure it's ready for publication yet, but I'm warning you that it will be coming on Facebook and the blog pretty soon!
Sunday, November 28, 2010
30 Facts
Yesterday Mark and I were "tagged" on Facebook by our niece Katie. She had posted 30 facts about herself and challenged us to do the same. Mark immediately took up the challenge and posted his 30 facts last night on Facebook. I am dragging my feet. My first thought was that I wouldn't be able to think up 30 facts. Then I had a dream last night that I kept writing things down and after about five things, I realized they weren't facts about me, just general facts. LOL It's hard to come up with 30 facts about oneself. Katie did a great job on her list, and we learned some new and interesting things about her. When I read Mark's list, I realized that after 35 years of marriage, I knew all of those things! That's a good thing because maybe it's not so good to find some hidden surprise in there now! LOL
So in case some of you who read this blog do not read Facebook, and in case some of you who read this blog are tired of reading about me and would like to know more about Mark, I decided to publish his list of 30 facts here today. I do have his permission and knowledge, by the way, just in case you were wondering!
Thirty Facts about Mark Silverstein by Mark Silverstein:
1. I hate winter.
2. I believe that if everybody lived by a cowboy code or code of the west, the world would be a better place.
3. I love to cook, but I don't like repeating recipes I have prepared many times.
4. I believe in the importance of America's space program and love when people benefit from everyday items developed through space technology.
5. I'm disheartened when people speak negatively of "the government." In this country, We, the people, ARE the government. That is how a representative democracy works.
6. I will pick a comic book or comic strip over a TV show, movie, play, or concert any day.
7. I am addicted to and obsessed by all things pertaining to Walt Disney and his company.
8. I worry a lot about everything, but I try to channel that into a positive attribute.
9. I really hate cancer.
10. I was raised in the Jewish religion, and after all these decades it still feels right for me.
11. I pick Kirk over Picard, Star Trek over Star Wars, and Mal Reynolds over Han Solo.
12. I don't care much for clothes, but if I have to dress, it will be western clothes or something Disney.
13. I believe my wife is the most beautiful, wonderful woman I have ever seen.
14. I am humbled by the help, care and concern my friends and family show in times of need. They set a high standard.
15. I am proud of my children. They always surprise me in a positive way by what they say and do.
16. I am easily distracted.
17. Given the opportunity, there are very few cable TV stations I will not buy.
18. I worry about a generation that does not know Hoppy, Roy, or Gene, but heck, we already established I worry about everything.
19. I don't see or phone my relatives enough, but thank God for Facebook!
20. Oh, I also hate the telephone and seldom use it.
21. I think number 20 is because a phone call is how I learned my Grandfather died.
22. Most of the time, I'd rather be skinny dipping.
23. I do not like having my toe nails touched or cut.
24. I am proud to have worked for NASA as a Civil Servant and believe that along with our military, the Civilian Federal Workforce is one of our nation's greatest assets.
25. I get annoyed by people who allow themselves to become embarrassed by what other people say or think.
26. I get annoyed with myself when I allow stupid comments to get to me, when I should know better.
27. I believe people are always changing and wonder how many items on this list will be true 5 minutes or 5 years from now.
28. I am a creature of routine and do not like having my routines changed.
29. It takes me a long time to get used to every new plan, idea, or schedule change, usually created by my wife.
30. I like photos of people I know, but can not stand to sit through vacation slide shows and videos, unless, of course, they depict the west, or a Disney park.
Pictures:
1. Mark at Disneyland, March 2010.
2. Mark in a western shirt in an historic restaurant in Abilene, KS, 2009.
3. Mark in the Celebrity Constellation lounge going through the Panama Canal, April 2010, wearing a Disney t-shirt.
4. Mark on a beach in the San Diego area, wearing a Disney hoodie and fanny pack, March 2010.
5. Mark at the Passover Seder on the Celebrity Constellation, March 2010, en route to the Panama Canal.
I chose these pictures because they show some of the things that he mentioned in his list like his love of Disney, his love of western wear, and his love of Judaism.
Saturday, November 27, 2010
Shul, no pool
Last night I decided to go to the synagogue this morning because I had felt so good Thursday and Friday. I still felt well this morning, so off we went. It was amazing (or ABAZING, if you are reading this and had been at our Thanksgiving dinner!). I loved seeing everyone and receiving lots of hugs,well-wishes, refuah shlayma blessings, and even an aliyah. I also got a beautiful, handmade pink afghan from Melanie's mother-in-law, and finally the sisterhood presented Mark and me with a Cabaret poster from last January that lots of people had signed. Wow! I still haven't taken the time to sit and read all the comments on that. I want to savor them at a special moment. Those times and that person (me!) seem like a decade ago.
When we got home from shul (no pool for Mark this time), we had lunch and then slept. I guess it took something out of me because I laid on the couch at 2:30 and got up at 5:30! A three hour Shabbat nap! Ha Ha! I bet I needed it.
It was time to finish making the turkey soup for tonight's dinner when I got up, so that's what I did. It's simmering right now, and I am looking forward to eating it. It smells ABAZING! ha ha you had to be there Thanksgiving for that one.
BAZINGA!
When we got home from shul (no pool for Mark this time), we had lunch and then slept. I guess it took something out of me because I laid on the couch at 2:30 and got up at 5:30! A three hour Shabbat nap! Ha Ha! I bet I needed it.
It was time to finish making the turkey soup for tonight's dinner when I got up, so that's what I did. It's simmering right now, and I am looking forward to eating it. It smells ABAZING! ha ha you had to be there Thanksgiving for that one.
BAZINGA!
Friday, November 26, 2010
MADE IT!!
Thanksgiving Day was all I had hoped it would be. First and foremost I stayed healthy and out of the hospital. I'm writing this blog the day after, so everything worked out well. The first picture is my step-mother Jackie and my brother-in-law Jim enjoying some of the great lunch food that Cindy has prepared. The next picture is Cindy (in red) and Flyn (in white), my two sisters, working on preparing the dinner. I put a bunch of things in the oven to re-heat and then promptly took a nap through most of the rest of the preparation time! I did wake up to eat, trust me.
Flyn was amused after dinner when she found the three cousins, Katie, Evey, and Lowell, and me in the living room all independently playing on our phones. These phones are very addictive! Katie and Evey look cute standing together. Katie is going to be one of Evey's bridesmaids, along with her other cousin Emily and her friend Dana, who will be Maid-of-Honor. The last picture is the four of us together. It could be a very long time before I have both of my kids together again, maybe even not until Evey's wedding next September. I was really enjoying having the two of them together with me and Mark yesterday.
Today I am making "carcass soup." I really enjoy making soup out of the turkey frame, boiling off all the good meat, cutting up vegetables, turning it into tomorrow's dinner. The house smells so good while it's simmering. It's an all-day job, but it's one I look forward to on the years when the turkey was leftover in "my" house. Officially this isn't my house, but the turkey and I are both here, so he's in the pot now!
Later today we have the sad chore of driving Evey to the airport and seeing that she heads back to California. It's been a brief but wonderful visit. The next time we see her will be in the spring when she is planning a trip to Florida to see our new house. There will also be wedding showers here on the east coast in the summer, and we have planned a trip in August back out to California. Then the wedding will be in September. The future is looking bright for all of us. Once I get my cancer treatments behind me, which should be by early May, I can look forward to many years of family get-togethers like this one.
I hope everyone else had a great day as well with family and friends and love. Maybe I'll hear some of your stories about your day, too.
Thursday, November 25, 2010
Happy Thanksgiving!
Good morning! I love Thanksgiving morning. Every year I really look forward to getting up and watching the Macy's Thanksgiving Day Parade. Today, sitting in Cindy's house with Evey and Mark, waiting for the rest of the family to come in a bit, it is dark and damp outside, but I am watching the parade, eating a bagel with cream cheese, and really enjoying myself! I hope anyone else reading this blog is enjoying a slow, easy Thanksgiving morning also.
My sister Flyn, her husband Jim, and daughter Katie are driving up from the central VA area today to join us for dinner. Lowell will be arriving later, and my step-mother Jackie is already in town. We will have a delightful group of 9 for dinner at 5. We had no trouble picking up our kosher dinner yesterday, so we have little preparation today other than re-heating. Cindy will make some real mashed potatoes to add to the menu, but that's about all the actual cooking that needs to be done. Cindy also planned a delicious finger-food luncheon of cheese, crackers, nuts, olives, veggies, and fruit. It will be healthy and easy to serve. As people arrive, there will be plenty to nosh before dinner. This is just going to be an awesome day.
Admittedly, I am also sitting on pins and needles. I have taken my temperature twice already because I am feeling unnerved that at any moment something could happen that would send me to the ER. Of course, I know everyone is praying that it does not happen today, but until I wake up tomorrow morning in this house and not in the hospital, I am going to remain on pins and needles. If there is a blog tomorrow from ME and not Mark, you'll know I made it!
Happy, Happy Thanksgiving to everyone. I am blessed and I know it. I am thankful for my many blessings. I am grateful for the wonderful friends and family that are part of my life, the support and love they shower on me on a daily basis, and for this day to celebrate these blessings. May all of you feel showered with love and blessings today as well.
My sister Flyn, her husband Jim, and daughter Katie are driving up from the central VA area today to join us for dinner. Lowell will be arriving later, and my step-mother Jackie is already in town. We will have a delightful group of 9 for dinner at 5. We had no trouble picking up our kosher dinner yesterday, so we have little preparation today other than re-heating. Cindy will make some real mashed potatoes to add to the menu, but that's about all the actual cooking that needs to be done. Cindy also planned a delicious finger-food luncheon of cheese, crackers, nuts, olives, veggies, and fruit. It will be healthy and easy to serve. As people arrive, there will be plenty to nosh before dinner. This is just going to be an awesome day.
Admittedly, I am also sitting on pins and needles. I have taken my temperature twice already because I am feeling unnerved that at any moment something could happen that would send me to the ER. Of course, I know everyone is praying that it does not happen today, but until I wake up tomorrow morning in this house and not in the hospital, I am going to remain on pins and needles. If there is a blog tomorrow from ME and not Mark, you'll know I made it!
Happy, Happy Thanksgiving to everyone. I am blessed and I know it. I am thankful for my many blessings. I am grateful for the wonderful friends and family that are part of my life, the support and love they shower on me on a daily basis, and for this day to celebrate these blessings. May all of you feel showered with love and blessings today as well.
Wednesday, November 24, 2010
Making the hard, but right, decisions.
Yesterday Evey had a sad phone call. Her maid-of-honor, Dana, called. Dana, who lives in Pennsylvania, had planned to take the train down to Baltimore this afternoon and stay over night with Evey. They were going to talk wedding talk and girl talk and catch up since they haven't seen each other since June. Sadly, Dana got sick. She was even throwing up. Dana also reads this blog (thanks Dana!) and knew that I should not be exposed to any germs right now. She made the hard, but right, decision to cancel her trip. I could tell from Evey's sad, crest-fallen face as she talked on the phone that something had changed. When she hung up, Evey told us the news. It was sad for her because she was looking forward to seeing her friend, but she also knew that Dana did the right thing. Dana, thanks for making this hard decision, but it was the right thing to do and I really appreciate.
I just made Mark a sugar-free, milk-free, low-carb (no crust) pumpkin pie, which is really just a custard since it has no crust. I hope it tastes ok and he likes it. I hardly ever bake or cook any more, so it was kind of fun.
In another hour we are heading to Pikesville, the town with all the kosher stores and markets, to pick up our complete turkey dinner in a box. It will be delicious, I'm sure. We are also hoping to go see the new Disney movie, Tangled, this afternoon. It opens today! We have 9 people coming for a spaghetti dinner tonight, so the movie has to end in time for Mark to get back and make the dinner. I'm sure that can be arranged.
Part of me is afraid to go to the store and the movie. Starting today my white blood cell counts and neutraphill levels will be dropping dramatically. I'm moderately concerned about staying healthy and out of the hospital, but there isn't much I can do about it if that happens. I'll go willingly to the hospital and get better again. There are no other options. Tomorrow is the big day for family get-togethers and turkey dinners. I hope everyone has a fabulous time! I plan to enjoy all of my blessings of family and friends.
I just made Mark a sugar-free, milk-free, low-carb (no crust) pumpkin pie, which is really just a custard since it has no crust. I hope it tastes ok and he likes it. I hardly ever bake or cook any more, so it was kind of fun.
In another hour we are heading to Pikesville, the town with all the kosher stores and markets, to pick up our complete turkey dinner in a box. It will be delicious, I'm sure. We are also hoping to go see the new Disney movie, Tangled, this afternoon. It opens today! We have 9 people coming for a spaghetti dinner tonight, so the movie has to end in time for Mark to get back and make the dinner. I'm sure that can be arranged.
Part of me is afraid to go to the store and the movie. Starting today my white blood cell counts and neutraphill levels will be dropping dramatically. I'm moderately concerned about staying healthy and out of the hospital, but there isn't much I can do about it if that happens. I'll go willingly to the hospital and get better again. There are no other options. Tomorrow is the big day for family get-togethers and turkey dinners. I hope everyone has a fabulous time! I plan to enjoy all of my blessings of family and friends.
Tuesday, November 23, 2010
Trying again from phone
Evey showed me what I need to do to type a message in the main body. This phone is amazing and so is Evey! I have been having a great time playing with my daughter and my phone.
No matter what the weight is, it's going to be a good day! Evey will be here soon.
The last time I weighed in on a Tuesday and reported it was two weeks ago on November 9. On that day I was 226, down 3 from the previous report. I was a little happy but also suspicious that it was related to the diarrhea. At that time I did not know I had C Diff and I had not been in the hospital for the second time yet. This morning I knew I would not like the number I saw, and I was right. I also said I should post it in all honesty, so here it is. This morning I am 232. Sad. I am simply eating too much and moving too little, a dangerous combination. It is 11 pounds up since my lumpectomy on September 16. Back then, I never would have thought I would have moved into the 230s, which I have not seen since the summer of '09. It's a dangerous trend, but Thanksgiving is probably not going to help! Sigh. I am now resolving to work on this with all the tools that I used before once I am off chemotherapy. I think that's all I can do.
On a happier note, I have already had several emails from Evey. She is safely waiting in Atlanta, GA right now to take the next leg up to Baltimore. Mark and I are up extra early and will be leaving in about an hour to go to the airport. Evey is tired and hungry. Lucky for her there is a Dunkin' Donuts in the airport near where we will be meeting her. This is one of her favorite coffee/food places, so she is happy to think about going there when she lands. For some reason there aren't any in California, at least not in her area of Santa Clara! In Boston, home of Dunkin' Donuts, there is one on almost every corner, never more than a block or two to walk to find one. Evey got spoiled with her five years in Boston! While she's here, she can use her gift card, I guess.
I'm still learning a lot about my new iPhone4. I downloaded the free ibooks reader, which came with a complimentary, full-color version of Winnie-the-Pooh. I realized I have never really read that book all the way through, so I'm certainly going to do that. It really looks very good, even prettier than my Kindle, but a bit smaller. I'm really enjoying learning what the new phone can do. Maybe I'll even learn how to write a blog post!
On a happier note, I have already had several emails from Evey. She is safely waiting in Atlanta, GA right now to take the next leg up to Baltimore. Mark and I are up extra early and will be leaving in about an hour to go to the airport. Evey is tired and hungry. Lucky for her there is a Dunkin' Donuts in the airport near where we will be meeting her. This is one of her favorite coffee/food places, so she is happy to think about going there when she lands. For some reason there aren't any in California, at least not in her area of Santa Clara! In Boston, home of Dunkin' Donuts, there is one on almost every corner, never more than a block or two to walk to find one. Evey got spoiled with her five years in Boston! While she's here, she can use her gift card, I guess.
I'm still learning a lot about my new iPhone4. I downloaded the free ibooks reader, which came with a complimentary, full-color version of Winnie-the-Pooh. I realized I have never really read that book all the way through, so I'm certainly going to do that. It really looks very good, even prettier than my Kindle, but a bit smaller. I'm really enjoying learning what the new phone can do. Maybe I'll even learn how to write a blog post!
Monday, November 22, 2010
From new phone!
Ha Ha! I was able to log onto my blog from my new iPhone4, but I wasn't able to figure out how to type the actual text of the blog, only a title. Then I accidentally hit publish so the title went out on the blog. I'm home, though, so I decided to add this bit of text the usual way from my laptop. Obviously it is going to take me awhile to figure out this new phone, but it's fun so far.
Our day out was everything I wanted it to be, but now that I'm home I am tired. I'm glad I can just relax now. Tomorrow will be an early morning to head to the airport to get Evey. I can't wait!
Our day out was everything I wanted it to be, but now that I'm home I am tired. I'm glad I can just relax now. Tomorrow will be an early morning to head to the airport to get Evey. I can't wait!
Shopping in the real world.
The refrigerator clean-out project went well yesterday. It took 45 minutes and totally did me in for the rest of the day. Even though I sat on a chair in front of the fridge while I sorted, threw out, re-shelved, and cleaned, when it was over, I felt queasy, exhausted, and basically wasted for the rest of the day. There were only two things I did the rest of the day: read and shop online. Oh, boy, did I shop online! I bought Hanukkah and Christmas presents for lots of folks, but my timing on Hanukkah is poor. Most of those things are going to arrive after Hanukkah. Sorry about that.
Today is starting out well. I have some queasiness still, but it's early in the morning and I still have energy. I have a grandiose plan for going to the mall today. Don't panic! I'll try to be careful. I have gloves I can wear if I have to push a cart or pick things up. There are only two reasons I'm going out to a real mall today. First, there were a few gift cards I wanted to buy that I discovered cannot be bought online. HUH? How annoying. So if I want a gift card to that store, I have to GO to that store. Wake up people! Put them online next year like everyone else. I cannot mention the store right now because it might give away a gift that I plan to buy for someone.
The other thing is a new phone. Mark and I are going to buy each other a new iPhone4 as Hanukkah presents to each other. I want to get mine today at the ATT store in the mall so that Evey can show me how to use the phone tomorrow when she's here for the holiday. I am pretty sure that learning to use it will be next to impossible for me without a personal tutor like Evey! She and Eric have been using their iPhone4s for a few months already, and they like them very much. I'm pretty excited about upgrading from just being able to text and phone!
Tomorrow will be so exciting. We have to leave here about 8 a.m. or so to go to the airport to pick up Evey. It will be a wonderful day. Sadly, it's also weigh-in day and I haven't done that for a few weeks. I got on the scale this morning, and I about fell down in shock. I will NOT report the number today, but if I stick to my guns about being honest about what's going on, I guess I'll have to report it tomorrow morning. It's BAD!! That's all I have to say. I was warned that people gain weight on chemotherapy for several reasons. One is that there are steroids in the IV bags. Steroids are notorious for making people hungry and for retaining fluid. Second is that I have had no energy, so I sat still A LOT, or I laid in a hospital bed A LOT. I keep eating the same amount or more, but I do nothing, so why should I be surprised that I'm putting on A LOT of weight. Even though everyone keeps saying that nutrition is important and not worrying about the weight is important (and I'm sure both are true), it was really depressing this morning to see that number. I guess I'll share that number tomorrow, but it will be very sad.
Today is starting out well. I have some queasiness still, but it's early in the morning and I still have energy. I have a grandiose plan for going to the mall today. Don't panic! I'll try to be careful. I have gloves I can wear if I have to push a cart or pick things up. There are only two reasons I'm going out to a real mall today. First, there were a few gift cards I wanted to buy that I discovered cannot be bought online. HUH? How annoying. So if I want a gift card to that store, I have to GO to that store. Wake up people! Put them online next year like everyone else. I cannot mention the store right now because it might give away a gift that I plan to buy for someone.
The other thing is a new phone. Mark and I are going to buy each other a new iPhone4 as Hanukkah presents to each other. I want to get mine today at the ATT store in the mall so that Evey can show me how to use the phone tomorrow when she's here for the holiday. I am pretty sure that learning to use it will be next to impossible for me without a personal tutor like Evey! She and Eric have been using their iPhone4s for a few months already, and they like them very much. I'm pretty excited about upgrading from just being able to text and phone!
Tomorrow will be so exciting. We have to leave here about 8 a.m. or so to go to the airport to pick up Evey. It will be a wonderful day. Sadly, it's also weigh-in day and I haven't done that for a few weeks. I got on the scale this morning, and I about fell down in shock. I will NOT report the number today, but if I stick to my guns about being honest about what's going on, I guess I'll have to report it tomorrow morning. It's BAD!! That's all I have to say. I was warned that people gain weight on chemotherapy for several reasons. One is that there are steroids in the IV bags. Steroids are notorious for making people hungry and for retaining fluid. Second is that I have had no energy, so I sat still A LOT, or I laid in a hospital bed A LOT. I keep eating the same amount or more, but I do nothing, so why should I be surprised that I'm putting on A LOT of weight. Even though everyone keeps saying that nutrition is important and not worrying about the weight is important (and I'm sure both are true), it was really depressing this morning to see that number. I guess I'll share that number tomorrow, but it will be very sad.
Sunday, November 21, 2010
Planning for Thanksgiving
My slow and easy day yesterday was lovely. We enjoyed a relaxed visit with our friend Michael, whom we had not seen for quite awhile. I felt very happy that he made the effort to drive up here. There was sort of a spiritual relief of fatigue while he was here. It was interesting. Thanks, Michael.
Other than the visit and my brief 10 minute walk, I spent the day reading, watching TV, or using my laptop. I felt tired and really had a very low energy level all day. Still, I am feeling confident that I can stay home for Thanksgiving. I finished the book I was reading on my Kindle and then had some fun loading up five more new books on it. It always seems so miraculous that I can just click on my laptop and in a few seconds see a new book show up in the Kindle. Amazing.
Today I have one major plan, clean out the refrigerator. The refrigerator in this house is kind of small, so I need to throw things out and rearrange things in order to make room for our kosher turkey dinner for Thanksgiving. Mark is picking up a pre-cooked, kosher meal on Wednesday at noon, and right now there is no place in that fridge to put any of it! No matter how low my energy level is today, I really need to get that job done. Mark is doing more shopping today for things we need between now and Wednesday, so that will require refrigerator space as well. It should be quite a magic trick to make everything fit.
If I still have any energy left after the refrigerator project, I plan to spend time shopping for Hanukkah and Christmas presents online. I have never been this late at shopping for Hanukkah. It starts next Wednesday night, and I think I will be giving Mark and Lowell some IOU's instead of actual gifts. Oh, well...I think I've been a little bit busy this season.
Other than the visit and my brief 10 minute walk, I spent the day reading, watching TV, or using my laptop. I felt tired and really had a very low energy level all day. Still, I am feeling confident that I can stay home for Thanksgiving. I finished the book I was reading on my Kindle and then had some fun loading up five more new books on it. It always seems so miraculous that I can just click on my laptop and in a few seconds see a new book show up in the Kindle. Amazing.
Today I have one major plan, clean out the refrigerator. The refrigerator in this house is kind of small, so I need to throw things out and rearrange things in order to make room for our kosher turkey dinner for Thanksgiving. Mark is picking up a pre-cooked, kosher meal on Wednesday at noon, and right now there is no place in that fridge to put any of it! No matter how low my energy level is today, I really need to get that job done. Mark is doing more shopping today for things we need between now and Wednesday, so that will require refrigerator space as well. It should be quite a magic trick to make everything fit.
If I still have any energy left after the refrigerator project, I plan to spend time shopping for Hanukkah and Christmas presents online. I have never been this late at shopping for Hanukkah. It starts next Wednesday night, and I think I will be giving Mark and Lowell some IOU's instead of actual gifts. Oh, well...I think I've been a little bit busy this season.
Saturday, November 20, 2010
Slow and easy day
I went to bed at 10:30 and didn't get up until nearly 9. Wow! I almost never sleep that long, but I guess I needed it. I read a lot today and played online. I also walked outside by myself for about 10 minutes today. It was a beautiful fall day, not too hot, not too cold, nice and sunny. I only went to the mailbox and back, and it took 10 minutes. That's pretty slow, but I hadn't been out walking in nearly a month, and definitely not alone, so I went slowly on purpose. My legs felt like cement; they just didn't seem to have any strength. I guess that's not too surprising considering I have not been doing anything but sitting and lying down most of the time. It's going to take awhile to build back my strength.
I'm starting to feel very hopeful that I will make it through Thanksgiving at home. The medicine for the C Diff is working nicely. My cyst and athlete's foot both seem to be responding very well to their treatments. My goal was to have them gone by Monday or Tuesday when the white cell counts start to go down. I'm pretty sure that I will meet that goal. Without those two things hanging over my head, I see no other reason why I should develop any fevers unless the company brings me something. I do plan to avoid hugging and kissing, except with Evey! I'm pretty sure I won't be able to resist that one! She's arriving Tuesday morning and I can't wait.
In just a little while, one of our friends from Goddard will be coming to visit. We haven't seen Michael for awhile, and it's very nice of him to be driving all the way up here from Greenbelt to visit us. Mark made some special treats yesterday to serve from a Hungry Girl recipe. It's National Peanut Butter Fudge day, so naturally Hungry Girl had her substitution recipe ready. It was brownie mix, a can of pumpkin, and some peanut butter. I just tried a little square for 65 calories, and it wasn't as good as I had hoped. It wasn't bad, but it's definitely not real peanut butter fudge. Sniff. I'll probably eat some more anyway! We also have a nice healthy veggie tray, too. Maybe a cup of hot coffee or tea will make the fudge taste better.
Tomorrow I plan to clean out the refrigerator to make room for the big turkey and all the go-with-its. I like Thanksgiving! We'll have 10 people for dinner Wednesday night and 9 for Thanksgiving itself. I think it's going to be a lot of fun. It will certainly be a lot more fun for me if I'm here and not in the hospital! I plan to do all I can to be sure that happens.
I'm starting to feel very hopeful that I will make it through Thanksgiving at home. The medicine for the C Diff is working nicely. My cyst and athlete's foot both seem to be responding very well to their treatments. My goal was to have them gone by Monday or Tuesday when the white cell counts start to go down. I'm pretty sure that I will meet that goal. Without those two things hanging over my head, I see no other reason why I should develop any fevers unless the company brings me something. I do plan to avoid hugging and kissing, except with Evey! I'm pretty sure I won't be able to resist that one! She's arriving Tuesday morning and I can't wait.
In just a little while, one of our friends from Goddard will be coming to visit. We haven't seen Michael for awhile, and it's very nice of him to be driving all the way up here from Greenbelt to visit us. Mark made some special treats yesterday to serve from a Hungry Girl recipe. It's National Peanut Butter Fudge day, so naturally Hungry Girl had her substitution recipe ready. It was brownie mix, a can of pumpkin, and some peanut butter. I just tried a little square for 65 calories, and it wasn't as good as I had hoped. It wasn't bad, but it's definitely not real peanut butter fudge. Sniff. I'll probably eat some more anyway! We also have a nice healthy veggie tray, too. Maybe a cup of hot coffee or tea will make the fudge taste better.
Tomorrow I plan to clean out the refrigerator to make room for the big turkey and all the go-with-its. I like Thanksgiving! We'll have 10 people for dinner Wednesday night and 9 for Thanksgiving itself. I think it's going to be a lot of fun. It will certainly be a lot more fun for me if I'm here and not in the hospital! I plan to do all I can to be sure that happens.
Friday, November 19, 2010
No News is Good News
I hope no one panicked yesterday because there was no blog. My track record might make people think I had some complication or went into the hospital. Thankfully that is not the case. Yesterday, I thought I would wait until later in the day to write a blog entry, but by then our internet connection was out and remained out until after we went to bed at 11 p.m. It's back this morning, so I'm jumping right in to write something early. It's only 6:45 a.m. and the internet is still working!
Yesterday was the day after the fourth chemo infusion. I felt quite good all day. Because they only gave me a 75% dose, I think my nausea and fatigue levels were lower than in the past. I'm not complaining about that! My taste buds seem to be doing better, also, because coffee is starting to taste a little better. I had enough energy to clean up my side of the bedroom and reorganize a lot of stuff that had been accumulating. The only complaint I had all day was more indigestion than usual, but a few Tums throughout the day helped.
In the afternoon I went to the hospital for my neulasta shot. That shot is saving women a lot of infections and blood transfusions. Even though my cell counts plummeted enough to give me neutropenic fever (also called febrile neutropenia), the neulasta drastically brought it back up. Without that shot I would have needed a blood transfusion.
I also got some Explanation of Benefits forms from our insurance company yesterday. I learned that the neulasta shot is a shockingly high price, $4,134.15! The insurance company reduces charges, often by large amounts, but in this case the price was reduced a paltry $82.68, so the insurance company paid $4,051.47, which is 100%, leaving nothing for me. WOW! I had NO idea this shot cost so much. The chemo infusion itself costs far less at $1,792.42, reduced by $35.84, so the insurance paid all of the remaining $1756.58. I had been warned that chemotherapy could cost as much as $40,000, and I knew my insurance in Florida would only cover 75% out of area, leaving me a whopping 25% out of pocket. Now that I'm seeing these numbers, it would seem that the total bill could run as high as $46,464.40, leaving me out of pocket expenses of $11,616.10. And that's only for the chemotherapy. I have not seen hospital bills yet for the two inpatient stays, plus the radiation therapy in the spring is also expected to run in the neighborhood of $40k. I am SO glad I'm doing this up here now when I can get 100% coverage of these things.
Last night Lowell joined us for dinner and more episodes of our show, How I Met Your Mother. I had missed that last week. We watched six full episode of season 3. We also ate a very, very special dinner. We had what Mark and I refer to as our Honeymoon Sandwich. For our honeymoon back in 1975, we spent 10 days in Miami Beach. The weather was FREEZING down there that winter, so we did not have any pool or beach time, but we had plenty of time for other sight-seeing and restaurant opportunities. One afternoon we went to a kosher deli for lunch and ordered a specialty, three-decker sandwich on Jewish rye bread and baked in the oven until hot. It has four meats: corned beef, pastrami, salami, and chopped liver, weighing a half pound! Whoee! It's good. Mark and I used to make it now and then for dinner in the "old days." Those would be the days before we were concerned with cholesterol. In fact, we had never made it for Lowell, so that was what we did. It did not disappoint.
Today I am up and feeling good. I hope that continues! For the first two days post-chemo, I have a specific anti-nausea regiment of two drugs to follow. I take three pills at a specified time, once during the day. After the first few chemos, I needed additional pills from my arsenal, but not yesterday. I am hoping today goes like yesterday. I don't plan to go anywhere today, so I'll be well-rested and happy staying in. I might even try a walk through the neighborhood for the first time in weeks.
Yesterday was the day after the fourth chemo infusion. I felt quite good all day. Because they only gave me a 75% dose, I think my nausea and fatigue levels were lower than in the past. I'm not complaining about that! My taste buds seem to be doing better, also, because coffee is starting to taste a little better. I had enough energy to clean up my side of the bedroom and reorganize a lot of stuff that had been accumulating. The only complaint I had all day was more indigestion than usual, but a few Tums throughout the day helped.
In the afternoon I went to the hospital for my neulasta shot. That shot is saving women a lot of infections and blood transfusions. Even though my cell counts plummeted enough to give me neutropenic fever (also called febrile neutropenia), the neulasta drastically brought it back up. Without that shot I would have needed a blood transfusion.
I also got some Explanation of Benefits forms from our insurance company yesterday. I learned that the neulasta shot is a shockingly high price, $4,134.15! The insurance company reduces charges, often by large amounts, but in this case the price was reduced a paltry $82.68, so the insurance company paid $4,051.47, which is 100%, leaving nothing for me. WOW! I had NO idea this shot cost so much. The chemo infusion itself costs far less at $1,792.42, reduced by $35.84, so the insurance paid all of the remaining $1756.58. I had been warned that chemotherapy could cost as much as $40,000, and I knew my insurance in Florida would only cover 75% out of area, leaving me a whopping 25% out of pocket. Now that I'm seeing these numbers, it would seem that the total bill could run as high as $46,464.40, leaving me out of pocket expenses of $11,616.10. And that's only for the chemotherapy. I have not seen hospital bills yet for the two inpatient stays, plus the radiation therapy in the spring is also expected to run in the neighborhood of $40k. I am SO glad I'm doing this up here now when I can get 100% coverage of these things.
Last night Lowell joined us for dinner and more episodes of our show, How I Met Your Mother. I had missed that last week. We watched six full episode of season 3. We also ate a very, very special dinner. We had what Mark and I refer to as our Honeymoon Sandwich. For our honeymoon back in 1975, we spent 10 days in Miami Beach. The weather was FREEZING down there that winter, so we did not have any pool or beach time, but we had plenty of time for other sight-seeing and restaurant opportunities. One afternoon we went to a kosher deli for lunch and ordered a specialty, three-decker sandwich on Jewish rye bread and baked in the oven until hot. It has four meats: corned beef, pastrami, salami, and chopped liver, weighing a half pound! Whoee! It's good. Mark and I used to make it now and then for dinner in the "old days." Those would be the days before we were concerned with cholesterol. In fact, we had never made it for Lowell, so that was what we did. It did not disappoint.
Today I am up and feeling good. I hope that continues! For the first two days post-chemo, I have a specific anti-nausea regiment of two drugs to follow. I take three pills at a specified time, once during the day. After the first few chemos, I needed additional pills from my arsenal, but not yesterday. I am hoping today goes like yesterday. I don't plan to go anywhere today, so I'll be well-rested and happy staying in. I might even try a walk through the neighborhood for the first time in weeks.
Wednesday, November 17, 2010
Halfway!
I waited to write tonight because I wanted to be able to talk about how this chemotherapy session went. Short version: It went GREAT!!
I had an appointment with my oncologist prior to the chemo session, so we left the house at noon. We had a bit of a wait because she was backed up, but she always gives you all the attention you need. I like that about her.
I told her I was feeling really good today, but I had two concerns. First, for some strange reason, Monday evening, after being released from the hospital that afternoon, I began to feel my toes itching. At bedtime I finally looked at them. YIKES! How could I have contracted Athlete's Foot? I had worn the hospital booties, fresh out of their sealed plastic bag, the entire time I was in the hospital. My feet never touched any surface other than the inside of those socks. I haven't been in a public gym or locker room since August. So, I ask again, how could I have gotten Athlete's Foot? Well, no one knows; it's one of the great mysteries of life. So I told her that because my two toes are cracked, red, raw, open skin I am concerned that if the anti-fungal cream does not work in a few days then I could end up with another massive infection on Tuesday when my cell count goes down. The doctor agreed it was a concern.
The second concern is a new cyst-like lump that has formed on my genital area yet again. I actually found it in the hospital on Saturday. Both the infectious disease doctor and the oncologist nurse practitioner said it should be looked at by my gynecologist. Yesterday I had an appointment with the GYN doctor. I have been going to him for over 12 years, maybe longer, and I trust his opinion. He said it was a cyst and nothing to be concerned about. He told me to buy Domeboro astringent powder packets to use as a hot soaking bath for three or four nights. If I soak 15 to 20 minutes for three or four nights, he felt it would come to a head and drain. OK, I did it last night. It was hard because I have real trouble getting in and out of the tub because of my knees, but I did it anyway. My concern with this is the same as for the toes. If it doesn't drain and heal by Tuesday when the cell counts start plummeting, it could blossom into a massive infection, and I will end up in the hospital for Thanksgiving. The doctor agreed that it was also a concern and a possibility.
So she decided to reduce my dose of chemo drugs to 75% of the full dose I had been getting. Hopefully, this reduction will kill the cancer and reduce the chances that my cells will plummet as far or as soon. Possibly the other two issues will resolve themselves in time. If she's wrong, I could very well be spending Thanksgiving in the hospital. Sigh. If it happens, it happens, and I'll deal with it. Let's all pray and cross our fingers and hope and wish upon a star and whatever other tricks you may think of that this DOES NOT HAPPEN!!
I have to share one amusing story from yesterday's visit to the GYN doctor. I told him I had been in the hospital for a Barthilyn cyst. I showed him where the new lump was and where the previous cyst had been. He said I did NOT have a Barthilyn cyst, and he proceeded to touch the areas that include the Barthilyn gland. Ha Ha! They are nowhere near where I had the other abscess. He said I had either an infected hair follicle or an infected sebaceous cyst. This new one is an infected sebaceous cyst, only in a totally new location. I found it amusing that the ER doctor, who actually looked at and touched the previous abscess, diagnosed it as a Barthilyn cyst. All the other doctors, who also looked at and touched it, agreed with her. The infectious disease doctor was the one who was explaining to me what the Barhitlyn gland does and how it gets infected. Ha ha! And yet it was nowhere near the actual gland. Hm...I guess they know a lot of things, but female GYN anatomy is NOT ONE OF THEM. Ha Ha! The upshot is that the treatment would have been the same anyway and it was cured, so in the long run it did not matter that it was misdiagnosed. I just find it amusing anyway.
So I have finished my four treatments of Adriamycin (the Red Devil) and Cytoxan. I am halway through the tunnel and starting to see the light at the other side. In two weeks, I will have my first Taxol infusion, which brings all new side effects and problems.
Because I felt so good when we left the chemo center at 4 p.m., I was ready to go shopping. Mark and I had planned to go to the new Seven Mile Market. The old one was a great store. For a completely kosher grocery store, it was huge with a gigantic selection. Well, now that old store looks like a 7-11 in size compared to the new one. Seven Mile Market has moved a block or two down the road from its old location. It took over a gigantic super-sized Safeway store's location. WOW!! That is all I can say. We walked slowly up and down each aisle. We really only needed some kosher meat for tomorrow night's dinner, but I couldn't resisit looking at everything. There are so many choices of everything!! The aisles are wide! There is a coffee/latte bar, a salad bar, a bakery, a huge deli, a pharmacy, a florist, everything you'd see in any really big, gourmet supermarket. For all of you who keep kosher and don't mind driving to Pikesville, I highly recommend a nice trip up to the new Seven Mile Market. You won't come out with NOTHING; I guarantee it!
I had an appointment with my oncologist prior to the chemo session, so we left the house at noon. We had a bit of a wait because she was backed up, but she always gives you all the attention you need. I like that about her.
I told her I was feeling really good today, but I had two concerns. First, for some strange reason, Monday evening, after being released from the hospital that afternoon, I began to feel my toes itching. At bedtime I finally looked at them. YIKES! How could I have contracted Athlete's Foot? I had worn the hospital booties, fresh out of their sealed plastic bag, the entire time I was in the hospital. My feet never touched any surface other than the inside of those socks. I haven't been in a public gym or locker room since August. So, I ask again, how could I have gotten Athlete's Foot? Well, no one knows; it's one of the great mysteries of life. So I told her that because my two toes are cracked, red, raw, open skin I am concerned that if the anti-fungal cream does not work in a few days then I could end up with another massive infection on Tuesday when my cell count goes down. The doctor agreed it was a concern.
The second concern is a new cyst-like lump that has formed on my genital area yet again. I actually found it in the hospital on Saturday. Both the infectious disease doctor and the oncologist nurse practitioner said it should be looked at by my gynecologist. Yesterday I had an appointment with the GYN doctor. I have been going to him for over 12 years, maybe longer, and I trust his opinion. He said it was a cyst and nothing to be concerned about. He told me to buy Domeboro astringent powder packets to use as a hot soaking bath for three or four nights. If I soak 15 to 20 minutes for three or four nights, he felt it would come to a head and drain. OK, I did it last night. It was hard because I have real trouble getting in and out of the tub because of my knees, but I did it anyway. My concern with this is the same as for the toes. If it doesn't drain and heal by Tuesday when the cell counts start plummeting, it could blossom into a massive infection, and I will end up in the hospital for Thanksgiving. The doctor agreed that it was also a concern and a possibility.
So she decided to reduce my dose of chemo drugs to 75% of the full dose I had been getting. Hopefully, this reduction will kill the cancer and reduce the chances that my cells will plummet as far or as soon. Possibly the other two issues will resolve themselves in time. If she's wrong, I could very well be spending Thanksgiving in the hospital. Sigh. If it happens, it happens, and I'll deal with it. Let's all pray and cross our fingers and hope and wish upon a star and whatever other tricks you may think of that this DOES NOT HAPPEN!!
I have to share one amusing story from yesterday's visit to the GYN doctor. I told him I had been in the hospital for a Barthilyn cyst. I showed him where the new lump was and where the previous cyst had been. He said I did NOT have a Barthilyn cyst, and he proceeded to touch the areas that include the Barthilyn gland. Ha Ha! They are nowhere near where I had the other abscess. He said I had either an infected hair follicle or an infected sebaceous cyst. This new one is an infected sebaceous cyst, only in a totally new location. I found it amusing that the ER doctor, who actually looked at and touched the previous abscess, diagnosed it as a Barthilyn cyst. All the other doctors, who also looked at and touched it, agreed with her. The infectious disease doctor was the one who was explaining to me what the Barhitlyn gland does and how it gets infected. Ha ha! And yet it was nowhere near the actual gland. Hm...I guess they know a lot of things, but female GYN anatomy is NOT ONE OF THEM. Ha Ha! The upshot is that the treatment would have been the same anyway and it was cured, so in the long run it did not matter that it was misdiagnosed. I just find it amusing anyway.
So I have finished my four treatments of Adriamycin (the Red Devil) and Cytoxan. I am halway through the tunnel and starting to see the light at the other side. In two weeks, I will have my first Taxol infusion, which brings all new side effects and problems.
Because I felt so good when we left the chemo center at 4 p.m., I was ready to go shopping. Mark and I had planned to go to the new Seven Mile Market. The old one was a great store. For a completely kosher grocery store, it was huge with a gigantic selection. Well, now that old store looks like a 7-11 in size compared to the new one. Seven Mile Market has moved a block or two down the road from its old location. It took over a gigantic super-sized Safeway store's location. WOW!! That is all I can say. We walked slowly up and down each aisle. We really only needed some kosher meat for tomorrow night's dinner, but I couldn't resisit looking at everything. There are so many choices of everything!! The aisles are wide! There is a coffee/latte bar, a salad bar, a bakery, a huge deli, a pharmacy, a florist, everything you'd see in any really big, gourmet supermarket. For all of you who keep kosher and don't mind driving to Pikesville, I highly recommend a nice trip up to the new Seven Mile Market. You won't come out with NOTHING; I guarantee it!
Tuesday, November 16, 2010
Finally a Good Day
Today started off poorly in that the diarrhea seemed to return with a vengeance. The doctor had wanted me down to four bowel movements per day in order to be released. I did manage that in the hospital both Sunday and yesterday, but this morning I seemed to be completely out of whack! Between 6 a.m. and 11 a.m., I had six bowel movements. I was worried, but then that seemed to be it for the day. I don't know why it was like that, but I'm glad it seems to be over. Sorry if today's blog has already grossed you out! LOL
The rest of the day was delightful, despite the dark, rainy weather. Mark and I went to Laurel again because we had to pick my anti-nausea drug Emend that is taken with the chemotherapy. I have my fourth chemo infusion tomorrow. That's a milestone because it will mean I'm half way done! Essentially I have not felt well at all since October 28, the day I went into the hospital for the first time. The fact that I could spend the day outside of the house (or hospital) driving, shopping, eating out, and generally enjoying myself almost felt like a miracle.
We also ate out at Burger King because it is National Fast Food Day. Ha Ha! Who knew such a thing existed. I got a veggie burger and Mark got a fish sandwich. Fun. I wanted to get a few odds and ends at Target. While there, I found some wonderful Mickey Mouse themed items for our new Mickey guest room. There was a little trash can, shower curtain holders, and soap dispenser. I can't wait to set them up in the new Florida house! Mark bought a few items in his favorite health food store, also.
I will end today's blog with a book recommendation. My friend Ellen in Buffalo, who sent me the book Humor after the Tumor, also sent the book The Guernsey Literary and Potato Peel Pie Society. This book, told through letters, is just delightful. Since it is the story of the German occupation of the Channel Islands during WWII, it certainly has its dark moments, but it is essentially a charming love story. I would highly recommend this book to anyone who wants an easy and entertaining read. Thanks, Ellen.
The rest of the day was delightful, despite the dark, rainy weather. Mark and I went to Laurel again because we had to pick my anti-nausea drug Emend that is taken with the chemotherapy. I have my fourth chemo infusion tomorrow. That's a milestone because it will mean I'm half way done! Essentially I have not felt well at all since October 28, the day I went into the hospital for the first time. The fact that I could spend the day outside of the house (or hospital) driving, shopping, eating out, and generally enjoying myself almost felt like a miracle.
We also ate out at Burger King because it is National Fast Food Day. Ha Ha! Who knew such a thing existed. I got a veggie burger and Mark got a fish sandwich. Fun. I wanted to get a few odds and ends at Target. While there, I found some wonderful Mickey Mouse themed items for our new Mickey guest room. There was a little trash can, shower curtain holders, and soap dispenser. I can't wait to set them up in the new Florida house! Mark bought a few items in his favorite health food store, also.
I will end today's blog with a book recommendation. My friend Ellen in Buffalo, who sent me the book Humor after the Tumor, also sent the book The Guernsey Literary and Potato Peel Pie Society. This book, told through letters, is just delightful. Since it is the story of the German occupation of the Channel Islands during WWII, it certainly has its dark moments, but it is essentially a charming love story. I would highly recommend this book to anyone who wants an easy and entertaining read. Thanks, Ellen.
Monday, November 15, 2010
Adventures in St. Agnes, AGAIN.
I was discharged today shortly after lunch today. It was a great feeling to get out and breathe some fresh air again. Last Thursday when I took the stool specimen in to the lab, I already had called the oncologist with a fever of over 100.5. I hit 102.3 at the highest. I still didn't believe I would be admitted, but I really should have seen that coming. Some adventure!Mark already told you I was admitted last Thursday afternoon, Veteran's Day. I was on several different IV antibiotics battling the neutropenic fever and one oral med for the C Diff. I never heard of either of these things before, but cancer is giving me quite an education. I also had no idea how impossible it was to say hydrated with this kind of diarrhea. No matter what I did there was just no way to keep up. I was extremely dehydrated both Wednesday and Thursday at the chemo center, so it was a relief to be on IV fluids and know that I would be protected from further dehydration. I rested and did all that they told me to do.
I also had a great time on the phone with Mark. Every day he would read me all the emails, Facebook postings, and blog comments. It was very uplifting to hear all the wonderful things people wrote to me. Thanks to everyone for that.
I had many fabulous visitors, too. Not only Mark, Cindy, Kip, and Denise, but several surprise guests came to see me. Marianna and Carman came on Friday evening. It was so much fun to see them! One of my nurses took this picture of the three of us on Carman's cell phone. Saturday afternoon I was graced with a surprise from Michelle and her husband Chris. Like Marianna and Carman, Michelle is a co-worker of mine from Catonsville High. It was fabulous to see them! On Sunday I was totally surprised when my niece Emily walked in!! I had not seen her for about a year and a half. She looked beautiful and stayed a very long time. We had a wonderful long chat about everything in her life and mine. It was so sweet. Thanks to all of you for brightening up my hospital stay.
My fourth chemotherapy session will go on as scheduled on Wednesday. That is very good news. I really want to stay on track as much as possible. I am somewhat concerned that I could end up spending Thanksgiving in the hospital. Think about it. My first chemo went very smoothly: chemo Wednesday, nausea and fatigue through Saturday, then a pretty good week full of fun before session two. Compare that to the second and third chemos which went very, very differently: chemo Wednesday, nausea and fatigue through Saturday, continuing to feel ill until Thursday when I was admitted to the hospital until the following week. So...two out of three chemo sessions ended up in the hospital the following Thursday. OK, if that happens this time after chemo four, I'll be in the hospital on Thanksgiving. SAY IT ISN'T SO!! Of course, the doctors cannot guarantee it won't happen again, but we are all praying BIG TIME that chemo four resembles chemo ONE.
In addition to learning about C Diff and neutropenic fever, I also learned more about the white cell count and the neulasta shot. I get the shot the day after chemo, and I sort of assumed it started working right away. This is very wrong. The white cells continue to go down the week after chemo before the neulasta starts to work just shortly before it's time to start the cycle again. That's why my neutrafill counts (baby white blood cells) were 800 on Wednesday, 550 on Thursday, 310 on Friday, then 1100 on Saturday when the neulasta finally kicked in. Over 1000 is normal. Each day that it is below 1000 I am at risk for infections. The very week that I was feeling my best back during that first chemo session, I was actually at my most vulnerable for picking up something. YES! A lot of you have warned me, and you are RIGHT. Anyway, I am now going to be MUCH more paranoid, I mean careful, the week after this fourth chemo session. Because that is going to be during the week of Thanksgiving with lots of family and friends in the house, I will take extra precautions to protect myself: no kissing, limited hugging, vigilant handwashing. I haven't ruled out wearing a mask and gloves! LOL
Friday, November 12, 2010
Not Quite Weekend at the Ritz
This is Mark. I got off the phone with Becky a few minutes ago. She enjoyed all the emails, facebook, and blog comments I read her. Thank you all very much for taking the time to give us that kind of support!!!!!
The doctor at the hospital confirmed that they will be keeping her through the weekend. So, I do not expect her back before Monday at the earliest. Also, while the doctor at the Cancer center told me that it is extremely unlikely I could have caught Becky's C Diff infection, the doctors at the Cancer ward have an entirely different view. They told Becky to tell me to scrub all surfaces here in her sister's house with bleach, which I did this morning. Also, between her low white blood cell count, and the Cancer ward doctor's view that C Diff can survive on surfaces for days, I now have to wear gloves, a mask, and a gown when I go to visit. Also, I can not bring in fresh fruit or flowers.
Unless something comes up, I will probably not post till Monday.
The doctor at the hospital confirmed that they will be keeping her through the weekend. So, I do not expect her back before Monday at the earliest. Also, while the doctor at the Cancer center told me that it is extremely unlikely I could have caught Becky's C Diff infection, the doctors at the Cancer ward have an entirely different view. They told Becky to tell me to scrub all surfaces here in her sister's house with bleach, which I did this morning. Also, between her low white blood cell count, and the Cancer ward doctor's view that C Diff can survive on surfaces for days, I now have to wear gloves, a mask, and a gown when I go to visit. Also, I can not bring in fresh fruit or flowers.
Unless something comes up, I will probably not post till Monday.
Thursday, November 11, 2010
Yet another guest blog
Hi, this is Mark, again. Becky's temperature went up early this morning to the point where the doctors want to be notified. We saddled up and rode down to the Cancer Center. They ran a bunch of tests and gave her fluids while we waited a couple of hours while her temperature rose above 102. She was not a happy camper. Watching her suffer, but knowing the doctors believed it was unwise to offer a fever reducer until they knew what we were dealing with did not sit well with me.
While we waited for the results of the tests, they gave her a new antibiotic thinking she may have an infection called clostridium difficile, which they thought could have been brought on by the antibiotics they gave her for her last infection. The idea is that if good, needed bacteria were killed by the original antibiotic, C Diff, as it is called, can cause intestinal problems, which, indeed, Becky had been having. The new antibiotic made her feel a bit better, and the fever for whatever reason dropped a wee bit.
After the first set of tests finally arrived, they gave her a tylenol, which took the fever down to about 100.6 which made her feel pretty good. Unfortunately that set of tests showed she had a very low neutrofil level, which I believe means her white blood cell count was low. They decided to admit her to the hospital as soon as they could find a room. After we had been there for over 4 hours, the final tests showed she indeed had clostridium difficile.
The low neutrofil level and the high fever led to a diagnosis of neutropenic fever. The infectious disease doctor and the nurses all assured us that although both C Diff and Neutropenic fever are serious conditions that are not to be fooled around with, they are also conditions that they deal with routinely. They recommended that Becky stay with them for a couple of days so that they can keep her fluids up while the new antibiotic deals with the C Diff, and so they can raise her neutrofil level to get rid of the neutropenic fever.
When I left the hospital she was feeling pretty well, and I have spoken to her by phone, twice, since. I'll never figure out how she manages to still look cute while lying in a hospital gown in a sick bed, but I digress. I know she loves all of your comments, so if you have any, send them to the blog and I will be sure to read them to her.
While we waited for the results of the tests, they gave her a new antibiotic thinking she may have an infection called clostridium difficile, which they thought could have been brought on by the antibiotics they gave her for her last infection. The idea is that if good, needed bacteria were killed by the original antibiotic, C Diff, as it is called, can cause intestinal problems, which, indeed, Becky had been having. The new antibiotic made her feel a bit better, and the fever for whatever reason dropped a wee bit.
After the first set of tests finally arrived, they gave her a tylenol, which took the fever down to about 100.6 which made her feel pretty good. Unfortunately that set of tests showed she had a very low neutrofil level, which I believe means her white blood cell count was low. They decided to admit her to the hospital as soon as they could find a room. After we had been there for over 4 hours, the final tests showed she indeed had clostridium difficile.
The low neutrofil level and the high fever led to a diagnosis of neutropenic fever. The infectious disease doctor and the nurses all assured us that although both C Diff and Neutropenic fever are serious conditions that are not to be fooled around with, they are also conditions that they deal with routinely. They recommended that Becky stay with them for a couple of days so that they can keep her fluids up while the new antibiotic deals with the C Diff, and so they can raise her neutrofil level to get rid of the neutropenic fever.
When I left the hospital she was feeling pretty well, and I have spoken to her by phone, twice, since. I'll never figure out how she manages to still look cute while lying in a hospital gown in a sick bed, but I digress. I know she loves all of your comments, so if you have any, send them to the blog and I will be sure to read them to her.
Wednesday, November 10, 2010
Adventures at St. Agnes
This morning Mark and I headed out for what promised to be a fun day. I had an 11 a.m. nurse's appointment at St. Agnes as a follow-up to my hospital discharge last week. I was confident that the cyst was healed up, so I just wanted some advice on the diarrhea. Then we were going to go to the mall to meet our friends Bev and John for lunch.
Cancer always has a way of throwing a curve ball into the mix.
We left at 10:15 a.m. and arrived at 10:50 for the appointment at 11. I had never seen the cancer center busier, so by the time I checked in and went through triage, it was 11:05. In triage I learned that I had actually lost 2 ounces since October 19. Ha ha! I'll take that, I thought. It meant that I've essentially maintained my weight for that long, and since I find maintenance difficult, this was a little victory. My blood pressure was 101/59. Not great, but about what it has been running lately.
The nurse then escorted me back to the chemo area where I signed in and was told Joanne would be the nurse who would check on me. As soon as she heard her name, she called out to me that it would be at least 20 minutes before she could get to me. No problem. There are no chairs in the chemo room to wait in. No problem. Mark and I went out to the hallway and found two chairs to wait there. Since we expected this to be a short visit before heading to the mall, we had not brought any books or puzzles to keep us busy. This is really unusual for us, but there were a couple of Time magazines, so I started looking through one. At 11:20 I had to run for the bathroom. No surprise there. I had already run to the bathroom last night at 9 p.m., 9:30 p.m., 11 p.m., midnight, 1:30 a.m., 7 a.m., 7:30 a.m., 8 a.m., and 9:40 a.m. So I figured 11:20 was just about right on schedule.
When I came out of the bathroom, I said to Mark that I felt tired. We had planned to go to the Golden Corral buffet for lunch with our friends, but I said I didn't have the energy to wait on myself and carry a tray. I wanted to go to a restaurant where I could be served. No problem, he didn't really mind. Shortly after I said that, I was called to go to the only vacant chair in the chemo room. It was in the little corner in the back where four chairs are packed in tight without a TV. I took the empty chair in the corner, but there was no other chair for Mark to sit on. He stood next to me against the wall.
The nurse asked me how I was doing, and I explained everything. She then said, let's take your BP again. I was surprised since I had just had it in triage about 30 minutes earlier, but I was feeling tired, so I didn't protest. This time it was 84/43 and I could hardly hold my eyes open. The nurse got concerned and called the doctor's assistant, a nurse practitioner. Meanwhile she took me into the ladies room to examine the cyst because there is no examining room in the chemo area. OK, I will not go into gory details here, but just suffice it to say that this was a new low for me. Me and the nurse in a bathroom trying to look at Bertholin Cysts. OK, just use your imagination; it's not good.
She had to hold my hand to get me in and out of the bathroom because I was having trouble staying alert and focused. I guess that made the whole bathroom exam somewhat more tolerable since I could barely focus on what I was doing.
Anyway, the doctor's verdict was access the port and start an IV of fluids. I am dehydrated. OK, I bet they are right because I had one cup of tea in the morning with breakfast and then maybe a few ounces of water sipped from a bottle on the way to the hospital. I just hadn't thought about keeping that liquid intake up, I guess, this morning. Not smart.
Because my port is problematic, and now that must be in my file, they sent over the "expert" nurse. She was awesome and accessed it with little pain on the very first try. I love her! She drew a few vials of blood to do some labs and slapped a HUGE bag of IV fluids up on the rack. I asked her how long that would take, and she said, "Four hours."
WHAT? I'm aghast!! Did you say FOUR HOURS????
Meanwhile Mark had left because we were too crowded in that little space. All four chairs were full and three nurses and a doctor were all in there working on the four people in the four chairs. Two of the patients also had a person sitting with them in the two available spare chairs. There was no maneuvering room, so Mark had had to go back to the lobby. I tried to text him to tell him FOUR HOURS, but I got no signal. I flagged one of the helper volunteers and asked her to go find him. He was as stunned as I was.
At this point it was about 12:20 and obviously we were no longer meeting Bev and John at noon at the mall for lunch. Mark went out to try to find a signal to call them. I flagged down the volunteer and asked for a tuna sandwich and a Coke for lunch. Eventually Mark drove over to the Subway down the street. He had lunch and also went to the local Giant where he bought two puzzle books to keep us busy.
So I ate my sandwich and settled in for a nap. Eventually I got my labs back. All the blood work was good with one giant exception. My white blood cell count was very low. I was only 1.7 where normal is 10. This is the first time I had had a low white count. Kind of scary.
Eventually Mark and I both connected with Bev and John, so they knew we were not going to meet them.
When the nurse practitioner came to talk to me, she said that I needed to give them a stool specimen so they can test it for C Diff, another infection of the gut that is brought on by high antibiotics. If I have it, they will give me a different antibiotic for it. Here's the truly ironic part of all of this. It is now 6:30 p.m., and I am home, and I STILL don't have to go to the bathroom! If they had only seen me earlier, I could have given them the nice stool specimen at 11:20 a.m. that I flushed cavalierly down the toilet in their bathroom. Sigh. Now I have a lab order and a collection kit here at home. Once I collect it, I have to keep it on ice and deliver it to the lab ASAP tomorrow morning after they open at 7:30 a.m. How fun! For over a week, all I can do is poo and now that they want one, NOTHING. I really hate my body!!
The best news is that everyone agreed the Keflex has done it's job and is probably the cause of all my gastro-intestinal distress, so I don't have to take it anymore!! YAY!! In addition, the nurse practitioner feels that I was not feeling like I had to go to the bathroom because I had not had the mid-day Keflex dose. The last dose I took was at 5:45 a.m. because they made me put off the 11:45 a.m. dose. I am very happy about that. It really does seem that I have no other infection going on right now or I would have been in the bathroom again already. It really seems that the Keflex was causing the symptoms. I am thrilled to be off of it now.
So when the IV bag emptied, they tested my BP again. This time it was 91/54. I guess that was good enough, and we were released at 4 p.m. Rush hour traffic was at its worst, so we got home at 5:30 p.m. after Mark made a brief stop at the local comic book shop. Wow! We left at 10:15 a.m. and were gone over SEVEN hours. Unbelievable and unexpected. Cancer means never being able to make plans!
I have also been cautioned to stay out of crowds and away from anyone sick since my white cell count is low. They expect the neulasta to kick in and do its job in a day or two, but I will heed their advice. I have NO interest in contracting any other infections at this point. I am happy to be home, off the Keflex, out of the bathroom, and ready to have dinner and relax with the TV. Home, sweet, Home.
Cancer always has a way of throwing a curve ball into the mix.
We left at 10:15 a.m. and arrived at 10:50 for the appointment at 11. I had never seen the cancer center busier, so by the time I checked in and went through triage, it was 11:05. In triage I learned that I had actually lost 2 ounces since October 19. Ha ha! I'll take that, I thought. It meant that I've essentially maintained my weight for that long, and since I find maintenance difficult, this was a little victory. My blood pressure was 101/59. Not great, but about what it has been running lately.
The nurse then escorted me back to the chemo area where I signed in and was told Joanne would be the nurse who would check on me. As soon as she heard her name, she called out to me that it would be at least 20 minutes before she could get to me. No problem. There are no chairs in the chemo room to wait in. No problem. Mark and I went out to the hallway and found two chairs to wait there. Since we expected this to be a short visit before heading to the mall, we had not brought any books or puzzles to keep us busy. This is really unusual for us, but there were a couple of Time magazines, so I started looking through one. At 11:20 I had to run for the bathroom. No surprise there. I had already run to the bathroom last night at 9 p.m., 9:30 p.m., 11 p.m., midnight, 1:30 a.m., 7 a.m., 7:30 a.m., 8 a.m., and 9:40 a.m. So I figured 11:20 was just about right on schedule.
When I came out of the bathroom, I said to Mark that I felt tired. We had planned to go to the Golden Corral buffet for lunch with our friends, but I said I didn't have the energy to wait on myself and carry a tray. I wanted to go to a restaurant where I could be served. No problem, he didn't really mind. Shortly after I said that, I was called to go to the only vacant chair in the chemo room. It was in the little corner in the back where four chairs are packed in tight without a TV. I took the empty chair in the corner, but there was no other chair for Mark to sit on. He stood next to me against the wall.
The nurse asked me how I was doing, and I explained everything. She then said, let's take your BP again. I was surprised since I had just had it in triage about 30 minutes earlier, but I was feeling tired, so I didn't protest. This time it was 84/43 and I could hardly hold my eyes open. The nurse got concerned and called the doctor's assistant, a nurse practitioner. Meanwhile she took me into the ladies room to examine the cyst because there is no examining room in the chemo area. OK, I will not go into gory details here, but just suffice it to say that this was a new low for me. Me and the nurse in a bathroom trying to look at Bertholin Cysts. OK, just use your imagination; it's not good.
She had to hold my hand to get me in and out of the bathroom because I was having trouble staying alert and focused. I guess that made the whole bathroom exam somewhat more tolerable since I could barely focus on what I was doing.
Anyway, the doctor's verdict was access the port and start an IV of fluids. I am dehydrated. OK, I bet they are right because I had one cup of tea in the morning with breakfast and then maybe a few ounces of water sipped from a bottle on the way to the hospital. I just hadn't thought about keeping that liquid intake up, I guess, this morning. Not smart.
Because my port is problematic, and now that must be in my file, they sent over the "expert" nurse. She was awesome and accessed it with little pain on the very first try. I love her! She drew a few vials of blood to do some labs and slapped a HUGE bag of IV fluids up on the rack. I asked her how long that would take, and she said, "Four hours."
WHAT? I'm aghast!! Did you say FOUR HOURS????
Meanwhile Mark had left because we were too crowded in that little space. All four chairs were full and three nurses and a doctor were all in there working on the four people in the four chairs. Two of the patients also had a person sitting with them in the two available spare chairs. There was no maneuvering room, so Mark had had to go back to the lobby. I tried to text him to tell him FOUR HOURS, but I got no signal. I flagged one of the helper volunteers and asked her to go find him. He was as stunned as I was.
At this point it was about 12:20 and obviously we were no longer meeting Bev and John at noon at the mall for lunch. Mark went out to try to find a signal to call them. I flagged down the volunteer and asked for a tuna sandwich and a Coke for lunch. Eventually Mark drove over to the Subway down the street. He had lunch and also went to the local Giant where he bought two puzzle books to keep us busy.
So I ate my sandwich and settled in for a nap. Eventually I got my labs back. All the blood work was good with one giant exception. My white blood cell count was very low. I was only 1.7 where normal is 10. This is the first time I had had a low white count. Kind of scary.
Eventually Mark and I both connected with Bev and John, so they knew we were not going to meet them.
When the nurse practitioner came to talk to me, she said that I needed to give them a stool specimen so they can test it for C Diff, another infection of the gut that is brought on by high antibiotics. If I have it, they will give me a different antibiotic for it. Here's the truly ironic part of all of this. It is now 6:30 p.m., and I am home, and I STILL don't have to go to the bathroom! If they had only seen me earlier, I could have given them the nice stool specimen at 11:20 a.m. that I flushed cavalierly down the toilet in their bathroom. Sigh. Now I have a lab order and a collection kit here at home. Once I collect it, I have to keep it on ice and deliver it to the lab ASAP tomorrow morning after they open at 7:30 a.m. How fun! For over a week, all I can do is poo and now that they want one, NOTHING. I really hate my body!!
The best news is that everyone agreed the Keflex has done it's job and is probably the cause of all my gastro-intestinal distress, so I don't have to take it anymore!! YAY!! In addition, the nurse practitioner feels that I was not feeling like I had to go to the bathroom because I had not had the mid-day Keflex dose. The last dose I took was at 5:45 a.m. because they made me put off the 11:45 a.m. dose. I am very happy about that. It really does seem that I have no other infection going on right now or I would have been in the bathroom again already. It really seems that the Keflex was causing the symptoms. I am thrilled to be off of it now.
So when the IV bag emptied, they tested my BP again. This time it was 91/54. I guess that was good enough, and we were released at 4 p.m. Rush hour traffic was at its worst, so we got home at 5:30 p.m. after Mark made a brief stop at the local comic book shop. Wow! We left at 10:15 a.m. and were gone over SEVEN hours. Unbelievable and unexpected. Cancer means never being able to make plans!
I have also been cautioned to stay out of crowds and away from anyone sick since my white cell count is low. They expect the neulasta to kick in and do its job in a day or two, but I will heed their advice. I have NO interest in contracting any other infections at this point. I am happy to be home, off the Keflex, out of the bathroom, and ready to have dinner and relax with the TV. Home, sweet, Home.
Tuesday, November 9, 2010
Feeling better so far
Yesterday I spent four and a half hours in bed. I couldn't stand sitting up in a chair anymore after about 2 in the afternoon, so I went to bed. I almost never go to bed in the middle of the day. If I take a nap, I usually do it in the living room chair; however, I needed to stretch out yesterday. Laying flat made the pain in my gut tolerable. These antibiotics are very difficult.
Considering all of that, I slept pretty well last night and woke up fully at 5:45 a.m. when the alarm went off to take the next dose of Keflex. It has done it's job because the infection is basically all gone. Tomorrow I have a nurse's appointment at the hospital for a follow-up after being discharged. I think they will pronounce me "cured."
It's also Tuesday, so I weighed in. I skipped it last week since I woke up in the hospital! It had been two weeks, so I didn't even remember what I weighed the last time I checked. Fortunately the blog helped out. I looked back to the entry for October 26 and learned that I weighed 229 then. This morning I am 226, so that's good, I guess. I'll take any loss. It might be more from the diarrhea than anything else, but I'll still take it. I'm not going to be excited about it until it's under 220 again, but everyone keeps reminding me that healthy eating is more important than weight loss right now. Staying strong with proper nutrition is the right answer now.
Yesterday Cindy, who weighs in on Mondays, noticed that she has hit her lowest weight since 2007! Mark has been preparing his usual healthy Hungry Girl low-calorie, low-carb, low-fat dinners for all three of us, so I guess it's helping Cindy lose more weight, too. She exercises faithfully at a gym twice a week and rides her bicycle long distances every Saturday and Sunday. That exercise coupled with lower calorie dinners than usual is helping her lose a little weight. She already looked great, but I know she was happy with her number yesterday! I have always said that if I didn't lose weight, it was never the dinners Mark was cooking. There is no way they could be improved. If I gain weight, it's my out of control snacking or going to restaurants.
I have had absolutely no exercise in two weeks because of the hospital visit and the fatigue. I'm really hoping that today feels a bit better. I am starting off feeling awake, but feeling awake and going out to take a walk are two different things. Yesterday I didn't even get dressed. At least I have already showered and dressed this morning! My plan for today is to go to a little local grocery store near here called Eddie's just to see what it's like. There is also a Starbucks next door that we might try. I hope that goes well. Mark has to do the regular week's shopping also today, but I might not do that. I usually don't just because I'll throw too many extra things in the cart!
Meanwhile I heard two interesting things on the news last night. First is that the Baltimore neighborhood of Locust Point is the safest neighborhood in city of Baltimore and the third safest big city neighborhood in the country. This is exciting because Lowell and his roommates are planning to move to a house in Locust Point in February. It's good to know it's a safe one! The second thing is cherpumple. You've probably heard of turducken. Well, now there is the perfect dessert for that. They showed the "recipe," and there is a YouTube video about it. It's weird, but I'd probably eat it if I had the chance, although there is no reason actually to try to get it. It would NOT help my weight loss plan at all!
Considering all of that, I slept pretty well last night and woke up fully at 5:45 a.m. when the alarm went off to take the next dose of Keflex. It has done it's job because the infection is basically all gone. Tomorrow I have a nurse's appointment at the hospital for a follow-up after being discharged. I think they will pronounce me "cured."
It's also Tuesday, so I weighed in. I skipped it last week since I woke up in the hospital! It had been two weeks, so I didn't even remember what I weighed the last time I checked. Fortunately the blog helped out. I looked back to the entry for October 26 and learned that I weighed 229 then. This morning I am 226, so that's good, I guess. I'll take any loss. It might be more from the diarrhea than anything else, but I'll still take it. I'm not going to be excited about it until it's under 220 again, but everyone keeps reminding me that healthy eating is more important than weight loss right now. Staying strong with proper nutrition is the right answer now.
Yesterday Cindy, who weighs in on Mondays, noticed that she has hit her lowest weight since 2007! Mark has been preparing his usual healthy Hungry Girl low-calorie, low-carb, low-fat dinners for all three of us, so I guess it's helping Cindy lose more weight, too. She exercises faithfully at a gym twice a week and rides her bicycle long distances every Saturday and Sunday. That exercise coupled with lower calorie dinners than usual is helping her lose a little weight. She already looked great, but I know she was happy with her number yesterday! I have always said that if I didn't lose weight, it was never the dinners Mark was cooking. There is no way they could be improved. If I gain weight, it's my out of control snacking or going to restaurants.
I have had absolutely no exercise in two weeks because of the hospital visit and the fatigue. I'm really hoping that today feels a bit better. I am starting off feeling awake, but feeling awake and going out to take a walk are two different things. Yesterday I didn't even get dressed. At least I have already showered and dressed this morning! My plan for today is to go to a little local grocery store near here called Eddie's just to see what it's like. There is also a Starbucks next door that we might try. I hope that goes well. Mark has to do the regular week's shopping also today, but I might not do that. I usually don't just because I'll throw too many extra things in the cart!
Meanwhile I heard two interesting things on the news last night. First is that the Baltimore neighborhood of Locust Point is the safest neighborhood in city of Baltimore and the third safest big city neighborhood in the country. This is exciting because Lowell and his roommates are planning to move to a house in Locust Point in February. It's good to know it's a safe one! The second thing is cherpumple. You've probably heard of turducken. Well, now there is the perfect dessert for that. They showed the "recipe," and there is a YouTube video about it. It's weird, but I'd probably eat it if I had the chance, although there is no reason actually to try to get it. It would NOT help my weight loss plan at all!
Monday, November 8, 2010
Finding new doctors
I woke up earlier than usual this morning. It's probably because it was nice and bright early in the morning now. I actually like that, although it's not as nice on the flip side when it's dark by 5 p.m. When I came downstairs, I tried hard to see if I was feeling better. After all, it's Monday now, and it's time for me to start feeling better after that chemo session. Hm...I couldn't decide.
The diarrhea has been going on for about four or five days, not horrendous, but enough to be tiring and disruptive. I started using the Immodium AD two days ago, but I have not approached the maximum dosage yet. Also, I was reminded last night that yogurt is good for the gut when on antibiotics for a long while, so I ate a yogurt for a snack last night and for breakfast this morning. I love low fat, sugar free yogurt, but I had avoided it thinking that dairy products were bad for diarrhea.
Then Cindy reminded me of the BRAT diet. Every young mother has a pediatrician who tells them their child is being a brat (when they are sick with diarrhea) and are only to eat the BRAT diet: bananas, rice, applesauce, and tea. I'm adding yogurt. I also remembered that hard cheese is as good as yogurt for replacing the normal bacteria that is being wiped out by the onslaught of antibiotics. So for breakfast I had the yogurt, a banana, and 9 crackers with thin slices of low-fat cheddar cheese on it. I also had tea. Maybe later today I'll go buy some rice and applesauce. I took a ninety minute nap in my chair from 9:30 to 11 a.m. I guess that's good because it meant I wasn't running into the bathroom for those ninety minutes!
Up until my nap, the morning was spent looking up new doctors in Florida. It is open season now for me and Mark, and we need to make selections about new health care. I've made up my mind to select the CIGNA Open Access plan, which is a plan good all over the country. My old plan, Carefirst Blue Cross Blue Shield MPOS, paid well in Maryland, but only 75% out of the state. That's the main reason why I'm having my treatments here so far.
CIGNA has a good plan that my retirement office is offering called CIGNA Open Access. It will pay virtually 100% of everything; I won't need a primary care doctor to coordinate things unless I want it; I won't need referrals for specialists. I will, however, have to go to an in-network doctor. There is absolutely ZERO coverage if I go to a doctor who is not in the plan. So, this morning I spent a long time looking on their website for doctors who are in the plan. There do seem to be plenty of choices, but I'm somewhat spoiled by being in the Baltimore-Washington area. Doctors here are excellent, and I especially love all the ones I've had over the past few years. We knew we were going to have to give that up when we moved, but it's still hard to think about. Many of the doctors in the Kissimmee/Orlando area of Florida are trained overseas. Is it too prejudiced of me to want to select a doctor who didn't go to med school in the Dominican Republic, Phillipines, Karachi, Pakistan, University of Khyber, Puerto Rico, etc.? I like to think I'm a liberal thinker, and yet this is swaying my choice. I have decided I'm more than willing to drive 10 or more extra miles to go to a doctor trained anywhere in the U.S. of A. I am feeling a little guilty, but I think I'm going to do it anyway.
Then I'm getting nervous about their age. Do I want to select an oncologist, gynecologist, or primary care doctor who is already nearly 70 years old? Won't they be retiring soon and then I'll just have to go through this whole exercise again? This is harder than I thought.
Finally, there is Mark's plan. He will be on my CIGNA plan as his secondary insurance, but he also has to pick a primary plan from the Federal Government list. We were hoping to find an intersection of doctors that would be in both plans. So far, we have not done that bit of research yet, but the time is running out. Choices have to be made by November 17 for me and early December for Mark.
I'm starting to feel like I'm a terrible person! I want a middle-aged, American-born and American-trained doctor who isn't that far from my new house. Wow! This is turning out to be a tall order.
The diarrhea has been going on for about four or five days, not horrendous, but enough to be tiring and disruptive. I started using the Immodium AD two days ago, but I have not approached the maximum dosage yet. Also, I was reminded last night that yogurt is good for the gut when on antibiotics for a long while, so I ate a yogurt for a snack last night and for breakfast this morning. I love low fat, sugar free yogurt, but I had avoided it thinking that dairy products were bad for diarrhea.
Then Cindy reminded me of the BRAT diet. Every young mother has a pediatrician who tells them their child is being a brat (when they are sick with diarrhea) and are only to eat the BRAT diet: bananas, rice, applesauce, and tea. I'm adding yogurt. I also remembered that hard cheese is as good as yogurt for replacing the normal bacteria that is being wiped out by the onslaught of antibiotics. So for breakfast I had the yogurt, a banana, and 9 crackers with thin slices of low-fat cheddar cheese on it. I also had tea. Maybe later today I'll go buy some rice and applesauce. I took a ninety minute nap in my chair from 9:30 to 11 a.m. I guess that's good because it meant I wasn't running into the bathroom for those ninety minutes!
Up until my nap, the morning was spent looking up new doctors in Florida. It is open season now for me and Mark, and we need to make selections about new health care. I've made up my mind to select the CIGNA Open Access plan, which is a plan good all over the country. My old plan, Carefirst Blue Cross Blue Shield MPOS, paid well in Maryland, but only 75% out of the state. That's the main reason why I'm having my treatments here so far.
CIGNA has a good plan that my retirement office is offering called CIGNA Open Access. It will pay virtually 100% of everything; I won't need a primary care doctor to coordinate things unless I want it; I won't need referrals for specialists. I will, however, have to go to an in-network doctor. There is absolutely ZERO coverage if I go to a doctor who is not in the plan. So, this morning I spent a long time looking on their website for doctors who are in the plan. There do seem to be plenty of choices, but I'm somewhat spoiled by being in the Baltimore-Washington area. Doctors here are excellent, and I especially love all the ones I've had over the past few years. We knew we were going to have to give that up when we moved, but it's still hard to think about. Many of the doctors in the Kissimmee/Orlando area of Florida are trained overseas. Is it too prejudiced of me to want to select a doctor who didn't go to med school in the Dominican Republic, Phillipines, Karachi, Pakistan, University of Khyber, Puerto Rico, etc.? I like to think I'm a liberal thinker, and yet this is swaying my choice. I have decided I'm more than willing to drive 10 or more extra miles to go to a doctor trained anywhere in the U.S. of A. I am feeling a little guilty, but I think I'm going to do it anyway.
Then I'm getting nervous about their age. Do I want to select an oncologist, gynecologist, or primary care doctor who is already nearly 70 years old? Won't they be retiring soon and then I'll just have to go through this whole exercise again? This is harder than I thought.
Finally, there is Mark's plan. He will be on my CIGNA plan as his secondary insurance, but he also has to pick a primary plan from the Federal Government list. We were hoping to find an intersection of doctors that would be in both plans. So far, we have not done that bit of research yet, but the time is running out. Choices have to be made by November 17 for me and early December for Mark.
I'm starting to feel like I'm a terrible person! I want a middle-aged, American-born and American-trained doctor who isn't that far from my new house. Wow! This is turning out to be a tall order.
Sunday, November 7, 2010
Humor After the Tumor
I want to start today's blog by thanking my dear friends Cathy and Ed for driving all the way up from Fairfax, VA to visit a few hours with us yesterday. Cathy brought some very sweet strawberries and a plate of homemade brownies. Both tasted absolutely delicious to me. Mark also knew that it was National Nacho Day, according to the Hungry Girl website, so he had made one of her recipes. These were very odd nachos, using soy chicken, barbecue sauce, and baked tortilla chips, but they were superb tasting. We all sat around the table enjoying them.
Cathy is also a breast cancer survivor. Although I had heard some of her story before, it was really good to hear it again and get more details. We are sisters in this now for all time. She was fortunate not to need chemo, but she did undergo radiation therapy. She also had a very nasty bout of infection following her lumpectomy. Every woman's journey is different.
Ed is a professional Santa, and he REALLY looks like Santa all the time. I have never seen him in his official suit, but I cannot imagine he looks anymore realistic all dressed up in his red suit than he does on a regular basis. He's just a natural. My only regret for the day was that I forgot to have a picture of us all taken together. I really wanted to do that, but I just forgot.
Thanks, Ed and Cathy, for coming up and visiting us. It was delightful. You both are fabulous!
Despite the great two hour visit, I felt very fatigued all day and fought diarrhea for the second day in a row. Even so, I did have some fun as well. During the course of the day, when I was awake, I actually read an entire book. My friend Ellen in Buffalo had mailed me a nice package of a variety of things, including a short book called Humor After the Tumor by Patty Gelman. In 2001 this Jewish mother of three daughters in their 20s discovered her lump. She lived in Buffalo, like my friend, and had her treatment at the Roswell Park Cancer Institute. Her treatment took the same course as mine: lumpectomy, node dissection, chemotherapy (same three drugs as me), radiation, and Tamoxifen for five years. During the year that this took place, she sent emails to a large "to" list of friends and family, much the way I use this blog. Although she did not email every single day, she did email at least two or three days a week. As the year was progressing, the idea of putting them into a book came about. At first she resisted it, but somehow it got published. How all of that happened isn't really part of the book, but the main thing is all of the proceeds of this book are a donation back to the Roswell Park Cancer Institute in Buffalo, NY. I want to thank Ellen for sending me the book and thereby making a bit of a donation as well.
The book is humorous, hence the name. Patty Gelman had a huge support system of family and friends, much the way I do, and she kept her sense of humor about this throughout. She had a large Labrador retriever who was often the center of humor. There were only a few emails when she admitted to tears or fatigue. Mostly she seemed much more energized than I have these past few days.
One very interesting, yet somewhat disturbing, thing was at the end of the book. There is an afterward by one of the doctors at the institute. He reminded me of something I had read elsewhere and was told by my own oncologist. I am going to quote part of his afterword here.
"But Patty's story also sobers us with the many shortcomings and frustrations of breast cancer therapy:
*Despite the proven value of mammography, it did not help Patty. Hers was one of the 10% of breast cancers invisible to mammography. (Like mine also was.) It was only found when she noticed a large lump in her armpit from breast cancer spread to her lymph nodes. This is just the situation that we hope to prevent with screening mammograms.
*Patty had to receive chemotherapy. We know that 60 to 70% of women with a cancer spread to the lymph nodes like Patty's actually have cancer spread to other organs, and that this cancer will eventually manifest itself, and result in death. But we have no way of determining who are among the 70% and who are not. Despite normal x-rays and scans showing no evidence of this spread, we know it has occurred, albeit in microscopic amounts, in most cases. The only option is to treat all of these women. (My oncologist made it very clear that not all women need chemo, but there is no way to determine who does and who does not, so everyone with cancer in the nodes gets it.)
*Chemotherapy only helps some of the women who get it. It only reduces the chance of cancer recurrence, and ultimately of premature death, by about one-third. So in Patty's case, the chance of recurrence drops from, say, 60 to 70% to 40 to 45%. In the rest of the cases, the cancer cells survive the toxic chemotherapy drugs and continue growing. We cannot determine in which cases the cancer cells are susceptible to chemotherapy and in which they are not. Looked at another way, almost three-quarters of the women who receive chemotherapy for breast cancer gain nothing--either they weren't going to have cancer recurrence, or the chemotherapy doesn't prevent it. So while it may be life saving, and while women like Patty should take it, we must improve these therapies and apply them only to those who benefit."
I had heard and read all of this before, but it was sobering to read it again. There are many instances of women who never have a recurrence of their cancer. It is mostly attributed to the trifecta of treatment: surgery, chemotherapy, and radiation. However, there are also many women who have recurrences despite the trifecta. The medical community is working hard to find a way to predict who will or will not have recurrences or who will or will not benefit from the rigors of chemotherapy. Although these medical advances are not here for me yet, I feel blessed that the therapy for breast cancer has advanced as much as it has over the last decades. Just a few decades ago, all women were subjected to radical mastectomies with massive lymph node dissections, leading to life long pain, disfigurement, and lymphedema. Now almost no one undergoes that sort of treatment. More women than ever do survive far beyond five years after their treatment. I know that I have many people praying on my behalf that I am one of them.
Cathy is also a breast cancer survivor. Although I had heard some of her story before, it was really good to hear it again and get more details. We are sisters in this now for all time. She was fortunate not to need chemo, but she did undergo radiation therapy. She also had a very nasty bout of infection following her lumpectomy. Every woman's journey is different.
Ed is a professional Santa, and he REALLY looks like Santa all the time. I have never seen him in his official suit, but I cannot imagine he looks anymore realistic all dressed up in his red suit than he does on a regular basis. He's just a natural. My only regret for the day was that I forgot to have a picture of us all taken together. I really wanted to do that, but I just forgot.
Thanks, Ed and Cathy, for coming up and visiting us. It was delightful. You both are fabulous!
Despite the great two hour visit, I felt very fatigued all day and fought diarrhea for the second day in a row. Even so, I did have some fun as well. During the course of the day, when I was awake, I actually read an entire book. My friend Ellen in Buffalo had mailed me a nice package of a variety of things, including a short book called Humor After the Tumor by Patty Gelman. In 2001 this Jewish mother of three daughters in their 20s discovered her lump. She lived in Buffalo, like my friend, and had her treatment at the Roswell Park Cancer Institute. Her treatment took the same course as mine: lumpectomy, node dissection, chemotherapy (same three drugs as me), radiation, and Tamoxifen for five years. During the year that this took place, she sent emails to a large "to" list of friends and family, much the way I use this blog. Although she did not email every single day, she did email at least two or three days a week. As the year was progressing, the idea of putting them into a book came about. At first she resisted it, but somehow it got published. How all of that happened isn't really part of the book, but the main thing is all of the proceeds of this book are a donation back to the Roswell Park Cancer Institute in Buffalo, NY. I want to thank Ellen for sending me the book and thereby making a bit of a donation as well.
The book is humorous, hence the name. Patty Gelman had a huge support system of family and friends, much the way I do, and she kept her sense of humor about this throughout. She had a large Labrador retriever who was often the center of humor. There were only a few emails when she admitted to tears or fatigue. Mostly she seemed much more energized than I have these past few days.
One very interesting, yet somewhat disturbing, thing was at the end of the book. There is an afterward by one of the doctors at the institute. He reminded me of something I had read elsewhere and was told by my own oncologist. I am going to quote part of his afterword here.
"But Patty's story also sobers us with the many shortcomings and frustrations of breast cancer therapy:
*Despite the proven value of mammography, it did not help Patty. Hers was one of the 10% of breast cancers invisible to mammography. (Like mine also was.) It was only found when she noticed a large lump in her armpit from breast cancer spread to her lymph nodes. This is just the situation that we hope to prevent with screening mammograms.
*Patty had to receive chemotherapy. We know that 60 to 70% of women with a cancer spread to the lymph nodes like Patty's actually have cancer spread to other organs, and that this cancer will eventually manifest itself, and result in death. But we have no way of determining who are among the 70% and who are not. Despite normal x-rays and scans showing no evidence of this spread, we know it has occurred, albeit in microscopic amounts, in most cases. The only option is to treat all of these women. (My oncologist made it very clear that not all women need chemo, but there is no way to determine who does and who does not, so everyone with cancer in the nodes gets it.)
*Chemotherapy only helps some of the women who get it. It only reduces the chance of cancer recurrence, and ultimately of premature death, by about one-third. So in Patty's case, the chance of recurrence drops from, say, 60 to 70% to 40 to 45%. In the rest of the cases, the cancer cells survive the toxic chemotherapy drugs and continue growing. We cannot determine in which cases the cancer cells are susceptible to chemotherapy and in which they are not. Looked at another way, almost three-quarters of the women who receive chemotherapy for breast cancer gain nothing--either they weren't going to have cancer recurrence, or the chemotherapy doesn't prevent it. So while it may be life saving, and while women like Patty should take it, we must improve these therapies and apply them only to those who benefit."
I had heard and read all of this before, but it was sobering to read it again. There are many instances of women who never have a recurrence of their cancer. It is mostly attributed to the trifecta of treatment: surgery, chemotherapy, and radiation. However, there are also many women who have recurrences despite the trifecta. The medical community is working hard to find a way to predict who will or will not have recurrences or who will or will not benefit from the rigors of chemotherapy. Although these medical advances are not here for me yet, I feel blessed that the therapy for breast cancer has advanced as much as it has over the last decades. Just a few decades ago, all women were subjected to radical mastectomies with massive lymph node dissections, leading to life long pain, disfigurement, and lymphedema. Now almost no one undergoes that sort of treatment. More women than ever do survive far beyond five years after their treatment. I know that I have many people praying on my behalf that I am one of them.
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