For the first time in this breast cancer journey I was near to tears this morning. And I'm almost embarrassed to say why. I shouldn't have let myself get to this point. But, you know, when you try your best to be informed and keep those who need to know informed, it is disappointing when it doesn't work. I had to go back to the lab this morning to have my blood drawn again to see if the platelet count was going up. The way it looked on Monday, my oncologist said I wouldn't be able to do my chemotherapy today if my platelet count remained as low as it was. I was a little unhappy about having to go back to the lab again. My arm looks like a junky's arm, I'm sure. I never used to have a problem with needles. I always felt that getting shots and giving blood was a good thing to do so I felt no fear. Now, I do not look forward to my forays into the lab. So as is my custom, I told the receptionist I am a clumper. She told me to tell the technician who was to draw my blood. I handed the technican my card which CLEARLY states that I am a clumper but just to be on the safe side I said, "do I need to tell you I am a clumper?". And she said yes, okay, and so I thought it was taken care of. She was a good sticker. I didn't even feel the needle go in and she was done in moment. An hour after I got home there was a call. I had to go back and do it again. My blood had clumped. I just about lost it. I was so unhappy. Not mad, not angry, I just didn't want another needle in my arm. But I went back to Kaiser, thank goodness it is only about 7 minutes away, and presented myself to the woman who had telephoned me. We went over what happened and I reminded her that she, herself, had put a sticker on my card saying I was a clumper. I told her I had told the technician and she said I should have told the receptionist. I assured her I had told the receptionist and that the receptionist had told me I should tell the technician. The woman who called me took me back to a drawing station and told me that whenever I have my blood drawn I should make sure there are two vials, one blue, one lavender. I assured her I would. When she finished she ran the blood upstairs and a few minutes after I got home the numbers were posted on my medical files which I can access through the Kaiser website. And the platelet count had gone up quite a bit. I was very pleased. So I did proceed to Kaiser for my 10 a.m. chemo appointment where I was greeted with open arms. I had Denise again as my chemo nurse. They are all very nice but she is especially kind and very upbeat. I have to say that as long as I am awake there, I truly enjoy the visit. But the benadryl usually knocks me out so I don't always stay awake.
There was one scary moment though. I am afraid my chemo brain is real. Before they administer all the chemo drugs there is a cross check ritual that must be observed. Another nurse is called over to go over all the drugs with my primary chemo nurse, the name of the drug and the amounts to be used and who they are for. But even before they do that they check basic information with the patient. And I am used to this so I just go through the information without their asking me. My name, spelling the last name. Then my Kaiser number, then my date of birth. I said 12 and then I started to say 28. But it didn't sound right to me. For the briefest of moments I couldn't remember 22. Horrors! Then it jumped into my brain. The birth year followed (1948 for those of you who are afraid to ask) and the rest was clear sailing. But it did shake me up because that had never happened to me before.
I slept for some of the time today. I tried to read my book, Our Hearts Were Young and Gay, a true, light hearted look at two young Bryn Mawr girls who take a summer off to travel to Europe in the 20's, written by Cornelia Otis Skinner in 1943. I read it first when I was 12 or 13 and it turned on the travel gene in me. I dreamed of doing the same thing when I was 18. And lo and behold I sort of got my wish. My Czech grandma took me on a 4 month grand tour of Europe when I was 16. Anyone remember Fodor's Europe on $5 a Day? Well, we did it. It wasn't exactly the trip I envisioned. My grandma was not a fellow 16 year old, she was 70, and she was quite determined to make a young lady out of me. I would have none of it and we sometimes had very strong disagreements. But it was still the trip of a lifetime and I will never forget it. But I digress.
My chemo treatment went smoothly, although when the herceptin was started my legs felt a rush. I asked the substitute nurse (my nurse was on her lunch breake) to slow down the flow. I told her what was going on and she agreed to change the drip from 30 minutes to an hour. Aside from that, nothing else exciting happened.
My appointment started later than usual so it lasted through the lunch hour. I was really hungry when the treatment was over so I asked Andy to take me out for lunch. We went to the Cheesecake Factory. And then another revelation. I was going to have a salad but suddenly my brain said Hamburger. After making my decision I decided to call Liz D. to let her know I was done. She likes to keep tabs on me, just in case (I don't know of what the just in case is about). Anyway, she told me to load up on protein and suddenly I had an epiphany. I have already said how I see the metaphor of the marathon in this breast cancer treatment. And suddenly it became real. Just as I figured out after my third marathon that I had to have a hamburger (and a beer) after completing a marathon, I must have some good protein after chemo. So the hamburger was a perfect choice. And french fries weren't a bad substitute for beer although they are much fattier. But aside from just about falling asleep at the table afterwards, I felt really good about my choice.
And so we went home and we both promptly fell asleep. After about 2 hours I woke up. Liz D. came over with a meal from Nikki at school and then Liz M. arrived with some homemade split pea soup. Dinner was spectacular. Thank you both!
I am now offically into the second half of the super chemo treatment. Two more and then I only have to continue with the herceptin for 9 more months. But the radiation will begin in July if everything continues well. And that will be a new part of my journey and adventure. Stay tuned!
Showing posts with label Chemotherapy. Show all posts
Showing posts with label Chemotherapy. Show all posts
Wednesday, May 13, 2009
Monday, April 27, 2009
My appreciation for the nursing profession grows
Well, I thought I was really on a roll. I can do my own injections. I am all powerful. It isn't rocket science. Wait, maybe it is. Rocket Science. Maybe it does take a special talent, a certain knack. Maybe there is a reason I was always the last person picked for the softball team. Hmmmm....
My Morning.
I rolled out of bed a little later than usual this morning. I also went to bed a little late last night. I was trying to finish a book and Sonia was working so hard on her project I felt like I'd like to stay up with her if I could. But I didn't. Still, I got a good night's sleep. But when I woke up it was about the time I usually have my injection. So I skipped downstairs, pulled a vial from the refrigerator and carefully laid out my equipment. Now, I want to say at this point that I wasn't hurrying, I wasn't nervous and I had the instructions in front of me the whole time. I always just read the instructions as I go along because I know how easy it is, once you are comfortable doing something, to inadvertently skip a step. So, I began by preparing the needle. And I bent it. Sigh! I put it in my sharps container and got out a new one. Very carefully now I continued by pulling the Neupogen into the needle. Oops, a little bit of air and not all the medication. Re inject into vial (no, I hadn't pulled the needle out of the vial yet) and then carefully, carefully I pull the plunger out and suck the meds in....and I pull the plunger out too far and some of the Neupogen drips onto my work surface. Yikes. This is expensive stuff! I can't just go down and ask for a new vial. Oh, my gosh, what have I done? Well, I try to remain calm. No, I do remain calm and continue with the routine. I realize that little drips look like a lot of liquid and there is just about the right amount in the needle. So I continue and inject myself. No pain. No fainting. No more of this. I'm going back to my professional staff. I need at least one more set of hands to work with that needle. I thought I would grow proficient with practice but apparently this is not the case. Sigh.
My Morning.
I rolled out of bed a little later than usual this morning. I also went to bed a little late last night. I was trying to finish a book and Sonia was working so hard on her project I felt like I'd like to stay up with her if I could. But I didn't. Still, I got a good night's sleep. But when I woke up it was about the time I usually have my injection. So I skipped downstairs, pulled a vial from the refrigerator and carefully laid out my equipment. Now, I want to say at this point that I wasn't hurrying, I wasn't nervous and I had the instructions in front of me the whole time. I always just read the instructions as I go along because I know how easy it is, once you are comfortable doing something, to inadvertently skip a step. So, I began by preparing the needle. And I bent it. Sigh! I put it in my sharps container and got out a new one. Very carefully now I continued by pulling the Neupogen into the needle. Oops, a little bit of air and not all the medication. Re inject into vial (no, I hadn't pulled the needle out of the vial yet) and then carefully, carefully I pull the plunger out and suck the meds in....and I pull the plunger out too far and some of the Neupogen drips onto my work surface. Yikes. This is expensive stuff! I can't just go down and ask for a new vial. Oh, my gosh, what have I done? Well, I try to remain calm. No, I do remain calm and continue with the routine. I realize that little drips look like a lot of liquid and there is just about the right amount in the needle. So I continue and inject myself. No pain. No fainting. No more of this. I'm going back to my professional staff. I need at least one more set of hands to work with that needle. I thought I would grow proficient with practice but apparently this is not the case. Sigh.
Sunday, April 26, 2009
In my last blog I spoke about being busy. That might have been a bit of an exaggeration. I was busy being worn out and feeling a bit queasy and just a tad under the weather. And is it coincidence that my chemo was this week? I think not!
This time around Andy wasn't here to share the joy. He is off to Europe as is his custom after filing season. And before anyone starts making big eyes and saying anything about his leaving in my "time of need" let me assure you, I pushed him out of the nest. I look forward to my two weeks of bachelorette time at least as much as Andy looks forward to his travel. And who knows what he might bring me back as a present? Oh, gee, I am such a material girl. Sigh!
While he is gone, Sonia graciously agreed to come stay with me. She is "lucky" that as a freelance editor, she can pretty much do her job wherever she is. As long as there is a table, two computers and a floor for her to work on. And fortunately for her there is also a cat to shred her work when she isn't looking.
Sonia arrived the day Andy left and the next day was chemo. She hasn't driven in a number of years (who needs a car in Chicago?). Fortunately, my rebbetzin, Shternie, had already offered to drive me to and from Kaiser on chemo day so we were good to go. We had coffee beforehand and Sonia and Shternie did some catching up. Chemo was the same as always. Saw some of the same patients. And met a person who is in the same clinical trial as I am only she is getting the Avistad. I tried very hard not to be jealous. She did kind of lord it over me a bit though. Hmmm, maybe that isn't true. I think I am just being resentful now. Whatever. I know I am getting good care. Because of the drop in white blood cell count the first time around I will have Neupogen injections for seven days following each chemo treatment. And guess what? Sonia offered, OFFERED (!) to give them to me. How can she be so cool about it when her parents are such wimps? Sometimes (luckily) the apple does fall a bit distant from the tree. Thursday morning she was up bright and early, reading the instructions, preparing the injection and then without a squeal or shriek, she plunged the needle into my abdomen and administered the shot! I was totally impressed. And inspired. And my neighbors, when they heard about it, sent over their congratulations. That she is able to do what her parents can't astonishes us all. However, once again, my competitive spirit started to rear its head. And after Sonia did it two mornings in a row, I got up extra early Saturday and decided I would "prepare" the injection equipment so we could get it done quickly, once she got up. I swabbed my abdomen in a new spot, took the plastic cap off the tiny vial, retracted the needle so air was pulled into the needle, plunged the needle into the vial and injected the vial with air. The needle and vial were then inverted so the vial was upside down. Now all that was left was to pull the Neupogen into the needle, get rid of the air bubbles and give myself the injection. Could I do it? Well, dear Reader, I could and I did! I amazed myself! Within a minute or so of giving myself the injection, Sonia came downstairs. When I told her what I had done she indicated that she was really proud of me. I felt very competent!
I figured that would be the hardest part of my chemo this time but once again I learn my lesson. Even though everything was pretty much the same, everything is also different. I guess my body is slowly being beaten down by all these chemicals and so it is a little harder and longer to bounce back. I am not having such severe digestive problems this time but it still seems like time stands still in my tummy. And this time, for the first time, I did feel a little queasy. Not real nausea, just that feeling you get when you know you are going to feel nauseated but haven't gotten there yet. It wasn't bad enough for me to take the compazine but bad enough that my appetite was off. And yet, I did my best to eat and drink. I am very good about getting the minimum of 2 to 3 quarts of liquid a day that I am required to drink to keep myself healthy during chemo. Between straight water, a smoothie, tisanes, soups and yogurt (anything that has liquid in it or can melt to liquid counts), I more than fill that requirement. I have one half caff latte a day but because there is some caffeine in it, it doesn't count. But one must have one's coffee, don't you know?
I've been reading a lot lately between sleeping and eating. Read another Daniel Silva and another two Maisie Dobbs. I am enjoying them so much. I like following a character that develops and grows. I love the settings of the Daniel Silva books. They take place in cities all over Europe. And the Maisie Dobbs setting is in mainly in London England and sometimes France between WWI and WWII. Lots of social commentary and historical context. I find them fascinating. Of course, the two series couldn't be more different. Silva's books are about an Israeli secret agent/assassin (he is the good guy) with lots of blood and gore. Maisie Dobbs is a sweet former war nurse who was brought up in a lower class household but goes into service as she enters her teens and is elevated to middle class when her employers discover she has a brain. Of course, it isn't that simple. And it is totally charming.
Life is very uncomplicated for me right now. Eat, sleep, go to Kaiser when the time is right and get those walks in. Nothing else is mandatory. I'm so relaxed it is practically sinful. I'll enjoy it while I can.
This time around Andy wasn't here to share the joy. He is off to Europe as is his custom after filing season. And before anyone starts making big eyes and saying anything about his leaving in my "time of need" let me assure you, I pushed him out of the nest. I look forward to my two weeks of bachelorette time at least as much as Andy looks forward to his travel. And who knows what he might bring me back as a present? Oh, gee, I am such a material girl. Sigh!
While he is gone, Sonia graciously agreed to come stay with me. She is "lucky" that as a freelance editor, she can pretty much do her job wherever she is. As long as there is a table, two computers and a floor for her to work on. And fortunately for her there is also a cat to shred her work when she isn't looking.
Sonia arrived the day Andy left and the next day was chemo. She hasn't driven in a number of years (who needs a car in Chicago?). Fortunately, my rebbetzin, Shternie, had already offered to drive me to and from Kaiser on chemo day so we were good to go. We had coffee beforehand and Sonia and Shternie did some catching up. Chemo was the same as always. Saw some of the same patients. And met a person who is in the same clinical trial as I am only she is getting the Avistad. I tried very hard not to be jealous. She did kind of lord it over me a bit though. Hmmm, maybe that isn't true. I think I am just being resentful now. Whatever. I know I am getting good care. Because of the drop in white blood cell count the first time around I will have Neupogen injections for seven days following each chemo treatment. And guess what? Sonia offered, OFFERED (!) to give them to me. How can she be so cool about it when her parents are such wimps? Sometimes (luckily) the apple does fall a bit distant from the tree. Thursday morning she was up bright and early, reading the instructions, preparing the injection and then without a squeal or shriek, she plunged the needle into my abdomen and administered the shot! I was totally impressed. And inspired. And my neighbors, when they heard about it, sent over their congratulations. That she is able to do what her parents can't astonishes us all. However, once again, my competitive spirit started to rear its head. And after Sonia did it two mornings in a row, I got up extra early Saturday and decided I would "prepare" the injection equipment so we could get it done quickly, once she got up. I swabbed my abdomen in a new spot, took the plastic cap off the tiny vial, retracted the needle so air was pulled into the needle, plunged the needle into the vial and injected the vial with air. The needle and vial were then inverted so the vial was upside down. Now all that was left was to pull the Neupogen into the needle, get rid of the air bubbles and give myself the injection. Could I do it? Well, dear Reader, I could and I did! I amazed myself! Within a minute or so of giving myself the injection, Sonia came downstairs. When I told her what I had done she indicated that she was really proud of me. I felt very competent!
I figured that would be the hardest part of my chemo this time but once again I learn my lesson. Even though everything was pretty much the same, everything is also different. I guess my body is slowly being beaten down by all these chemicals and so it is a little harder and longer to bounce back. I am not having such severe digestive problems this time but it still seems like time stands still in my tummy. And this time, for the first time, I did feel a little queasy. Not real nausea, just that feeling you get when you know you are going to feel nauseated but haven't gotten there yet. It wasn't bad enough for me to take the compazine but bad enough that my appetite was off. And yet, I did my best to eat and drink. I am very good about getting the minimum of 2 to 3 quarts of liquid a day that I am required to drink to keep myself healthy during chemo. Between straight water, a smoothie, tisanes, soups and yogurt (anything that has liquid in it or can melt to liquid counts), I more than fill that requirement. I have one half caff latte a day but because there is some caffeine in it, it doesn't count. But one must have one's coffee, don't you know?
I've been reading a lot lately between sleeping and eating. Read another Daniel Silva and another two Maisie Dobbs. I am enjoying them so much. I like following a character that develops and grows. I love the settings of the Daniel Silva books. They take place in cities all over Europe. And the Maisie Dobbs setting is in mainly in London England and sometimes France between WWI and WWII. Lots of social commentary and historical context. I find them fascinating. Of course, the two series couldn't be more different. Silva's books are about an Israeli secret agent/assassin (he is the good guy) with lots of blood and gore. Maisie Dobbs is a sweet former war nurse who was brought up in a lower class household but goes into service as she enters her teens and is elevated to middle class when her employers discover she has a brain. Of course, it isn't that simple. And it is totally charming.
Life is very uncomplicated for me right now. Eat, sleep, go to Kaiser when the time is right and get those walks in. Nothing else is mandatory. I'm so relaxed it is practically sinful. I'll enjoy it while I can.
Picnic Time
Forgive me. It has been over a week since I posted the last blog. It was pure indolence on my part. And this makes me think that I could never become a "real" writer. I have no self discipline. Sigh! But I have been busy, in a not so busy kind of way.
Before I go into that, though, I need to talk about the young people of today.....Or at least the young people on my cul de sac. As I have mentioned before, there is a group of people, friends in the neighborhood and at school, who have kindly offered to provide Andy and me with dinner twice a week, on Sundays and Wednesdays. I am very, very grateful to everyone who has brought over these meals. Last Sunday, however, I was overwhelmed by a bountiful feast provided by my young neighbors. They came over, Keeson and Bailee, Nick and Livi, Kathleen and their parents, with balloons and picnic baskets filled to overflowing with goodies too numerous to list (Maddie also contributed but couldn't make the presentation). Okay, I'm not going to list each individual item but I will mention a couple of the outstanding delectations made by these young people. Homemade vegetable sushi and a homemade challah were among the items we found in the baskets. And ravioli, bruscetta spread with a baguette, fresh fruit and much, much more. It was just too delightful. My impression was that this was done, not because the parents thought their offspring should do it, but because the kids wanted to. They each gave something that was their favorite and happily, they were my favorites too! They were gracious givers and very sweet. My friend Stan (former k-12 principal) had decided to drop by (with a chocolate obsession cake, flowers and a bottle of wine) so he was able to enjoy the production too. We all really appreciated what these kids had put together. I would like to think that these young people are just a representation of what most kids are like today. And maybe they are. But they obviously emulate what they see at home. Some of these children I have seen in other settings and they are always kind, considerate and respectful. These are just plain good kids. You can imagine how much I love my neighborhood and my neighbors. Thank you, thank you, all of you!
Before I go into that, though, I need to talk about the young people of today.....Or at least the young people on my cul de sac. As I have mentioned before, there is a group of people, friends in the neighborhood and at school, who have kindly offered to provide Andy and me with dinner twice a week, on Sundays and Wednesdays. I am very, very grateful to everyone who has brought over these meals. Last Sunday, however, I was overwhelmed by a bountiful feast provided by my young neighbors. They came over, Keeson and Bailee, Nick and Livi, Kathleen and their parents, with balloons and picnic baskets filled to overflowing with goodies too numerous to list (Maddie also contributed but couldn't make the presentation). Okay, I'm not going to list each individual item but I will mention a couple of the outstanding delectations made by these young people. Homemade vegetable sushi and a homemade challah were among the items we found in the baskets. And ravioli, bruscetta spread with a baguette, fresh fruit and much, much more. It was just too delightful. My impression was that this was done, not because the parents thought their offspring should do it, but because the kids wanted to. They each gave something that was their favorite and happily, they were my favorites too! They were gracious givers and very sweet. My friend Stan (former k-12 principal) had decided to drop by (with a chocolate obsession cake, flowers and a bottle of wine) so he was able to enjoy the production too. We all really appreciated what these kids had put together. I would like to think that these young people are just a representation of what most kids are like today. And maybe they are. But they obviously emulate what they see at home. Some of these children I have seen in other settings and they are always kind, considerate and respectful. These are just plain good kids. You can imagine how much I love my neighborhood and my neighbors. Thank you, thank you, all of you!
Saturday, April 18, 2009
I went for my four mile walk this morning. Just Liz, Allen and me. It was a perfect day for a leisurely walk. We had to divert our course once we got close to the creek, (the city of Walnut Creek does have a creek named Walnut Creek) because of the multitudes of white flies that were swarming along the trail. So we did a loop around Broadway Plaza instead of going to the bridge at Ygnacio Road. The sky was clear and blue, it hadn't gotten too hot yet and the conversation had us in stitches. We may not be fast, but between the three of us we know how to make each other laugh.
After our walk I came home. I may have the energy to walk 4+ miles but each week I seem to run out of steam a little earlier than the prior week. I took a shower and got ready for shul. That was when I realized I wasn't going to walk there. I just didn't have it in me. And then I wasn't even sure I had it in me to drive. So I checked my email instead. Liz wanted a training schedule for Honolulu. I have been thinking about it and it was time to put it together. Which got me to thinking. In December I'll still be in chemo though just one drug instead of three. My radiation will have been over with for a couple of months. Can I get back into training and run or at least walk the marathon this year? I really, really want to do it but I also don't want to be stupid. I guess what will happen is that I will play it by ear, just see how I feel as the summer progresses and see if I can jump in in September and do the training over a shortened period of time. If I feel like it. That is pretty much what I did last summer and it worked quite well. I may surprise myself. And that, I realize, is what is bugging me. I am not going to try to prove anything to anyone. I won't be running for anyone except myself. If I can do it, I will, if I can't, I won't. And I won't apologize to anyone or myself if it works out that I can't run. I will just accept it and get on with my recovery and do the run next year. Simple thoughts, simple words. Now I will accept that and move on. If that happens I will enjoy being "coach" to anyone who does train. That is part of the training that I always wondered about. How could our coaches and program reps show up every week and watch us run and not feel cheated when the marathon came and they didn't run too? I could never really understand that. They always acted like they enjoyed being on the sidelines, cheering us on, giving us pretzels and water, making us feel like we were so special. If I end up with that job, will I feel cheated? I hope not. I hope I can do the coach thing gracefully and graciously.
The latest pictures are up. The top one is from a Relay for Life event in Tucson. Justine's son, Pat, participated and my name was on one of the luminarias. Thank you for doing this, Pat!
The second picture is the new Logo for Mardie's Walnut Creek Marathon. We are still working on setting a date but don't you just love the new logo, designed by Morgan Dodge.
After our walk I came home. I may have the energy to walk 4+ miles but each week I seem to run out of steam a little earlier than the prior week. I took a shower and got ready for shul. That was when I realized I wasn't going to walk there. I just didn't have it in me. And then I wasn't even sure I had it in me to drive. So I checked my email instead. Liz wanted a training schedule for Honolulu. I have been thinking about it and it was time to put it together. Which got me to thinking. In December I'll still be in chemo though just one drug instead of three. My radiation will have been over with for a couple of months. Can I get back into training and run or at least walk the marathon this year? I really, really want to do it but I also don't want to be stupid. I guess what will happen is that I will play it by ear, just see how I feel as the summer progresses and see if I can jump in in September and do the training over a shortened period of time. If I feel like it. That is pretty much what I did last summer and it worked quite well. I may surprise myself. And that, I realize, is what is bugging me. I am not going to try to prove anything to anyone. I won't be running for anyone except myself. If I can do it, I will, if I can't, I won't. And I won't apologize to anyone or myself if it works out that I can't run. I will just accept it and get on with my recovery and do the run next year. Simple thoughts, simple words. Now I will accept that and move on. If that happens I will enjoy being "coach" to anyone who does train. That is part of the training that I always wondered about. How could our coaches and program reps show up every week and watch us run and not feel cheated when the marathon came and they didn't run too? I could never really understand that. They always acted like they enjoyed being on the sidelines, cheering us on, giving us pretzels and water, making us feel like we were so special. If I end up with that job, will I feel cheated? I hope not. I hope I can do the coach thing gracefully and graciously.
The latest pictures are up. The top one is from a Relay for Life event in Tucson. Justine's son, Pat, participated and my name was on one of the luminarias. Thank you for doing this, Pat!
The second picture is the new Logo for Mardie's Walnut Creek Marathon. We are still working on setting a date but don't you just love the new logo, designed by Morgan Dodge.
Sunday, April 12, 2009
Yesterday, I decided to walk to shul. I had already gone for a lovely 4.5 mile walk with my friend Iris. We had such a great time and such good conversation. I've been walking/running with Iris since 2001. We both started running when we signed on with the AIDS Marathon and we haven't stopped since! Anyway, after I walked with Iris I came home and showered, read the paper and then got ready to go to shul. Since I had already gone for my walk I figured I would drive. Then I decided maybe I would take a look outside to see if any one of my neighbors was about to drive off and maybe hitch a ride with them. I didn't see anything promising but I decided to see what would happen. This became a game in my mind. I would walk and if I was offered a ride I could accept but if no offer was made, I couldn't beg. So off I started. I decided to carry my phone just in case I didn't find a ride and ran out of steam. It is a good 3 miles to my synagogue and since I had already had a better than four mile walk, I wasn't sure I could do the extra miles. But I knew I could find someone to take me if I needed it. So off I went. I stopped to talk to a neighbor about homeowner's association problems. He also is a marathoner and did the Honolulu last year. But no offer was made. The way I was dressed he thought I was off on a casual walk around the neighborhood. Then I continued on my way. About a half mile from my home a car stopped and a library friend called out to me. She asked if I was walking to shul so she didn't offer a ride (we're supposed to walk to shul, not drive) which was kind of her. And the rule of the game is that someone has to offer a ride and not know that you would take a ride if offered but you wouldn't ask for a ride (unless you were entirely pooped).
Half way down Rudgear I started my thinking. I realized that I do my best thinking when I am on a good long run (or walk) by myself. I guess that is when the endorphins and other things kick in and the dust and rust fall out of the cogwheels of the brain. I remember thinking about how stale and uninteresting my blog has been lately. I haven't been out on the trails running and or walking so I haven't been thinking. Okay, sometimes interesting things happen that are worth writing about that don't involve running, but lately that hasn't been the case. By now I had just about reached the Broadway extension. And I was feeling pretty good. I was thinking how grateful I was that I had decided to wear just a sweater and had left the coat behind. Crossing Rudgear I noticed a woman ahead of me, power walking along the trail. I was conscious of the fact that I had started out rather slowly because I was so afraid I was going to run out of energy. But watching her made me think about when I might try to start running again. Then I thought to myself,
"Self", I said, " you no longer feel like there are loose rocks where you had the lumpectomy, do you?"
" No, "I answered, "I can't say that it feels like that anymore".
"Okay," I said to myself, "So, what if you were to just run for one minute right now and see how it felt. No one is watching you and if it doesn't feel right, then you can stop"
"Hmmmm, " I think. "But I'm wearing my SAS walking shoes and a long skirt. "Yes. "I reply" "But you have actually done that before. And those SAS shoes have a running shoe sole, remember? And last year, just about this time you tried running for the first time in months and it was right here, on this trail, in this skirt. Give it a go! See how it feels."
So to make a long story short I ran. For a minute. Then walked for a minute, then ran for a minute and I kept on doing it all the way to shul which is at least a good mile and a quarter. And so, dear friends, I think that this go around with the chemo has been pretty successful.
I must credit the Neupogen for keeping me strong this time. But, as Andy just pointed out to me yesterday, the price is not cheap. Those seven injections, if I hadn't belonged to Kaiser, could have cost me $1570! Kaiser always shows you what you would have paid if you didn't have the coverage you have. We pay $20 for brand name prescriptions, $10 for generic. And as a friend at shul pointed out, that really is cheap for such a miracle/wonder drug. Still, I am grateful I have Kaiser and that I can get my drugs so cheaply and easily. And I am glad I don't have to choose between paying my grocery bill and getting the prescriptions I need!
Half way down Rudgear I started my thinking. I realized that I do my best thinking when I am on a good long run (or walk) by myself. I guess that is when the endorphins and other things kick in and the dust and rust fall out of the cogwheels of the brain. I remember thinking about how stale and uninteresting my blog has been lately. I haven't been out on the trails running and or walking so I haven't been thinking. Okay, sometimes interesting things happen that are worth writing about that don't involve running, but lately that hasn't been the case. By now I had just about reached the Broadway extension. And I was feeling pretty good. I was thinking how grateful I was that I had decided to wear just a sweater and had left the coat behind. Crossing Rudgear I noticed a woman ahead of me, power walking along the trail. I was conscious of the fact that I had started out rather slowly because I was so afraid I was going to run out of energy. But watching her made me think about when I might try to start running again. Then I thought to myself,
"Self", I said, " you no longer feel like there are loose rocks where you had the lumpectomy, do you?"
" No, "I answered, "I can't say that it feels like that anymore".
"Okay," I said to myself, "So, what if you were to just run for one minute right now and see how it felt. No one is watching you and if it doesn't feel right, then you can stop"
"Hmmmm, " I think. "But I'm wearing my SAS walking shoes and a long skirt. "Yes. "I reply" "But you have actually done that before. And those SAS shoes have a running shoe sole, remember? And last year, just about this time you tried running for the first time in months and it was right here, on this trail, in this skirt. Give it a go! See how it feels."
So to make a long story short I ran. For a minute. Then walked for a minute, then ran for a minute and I kept on doing it all the way to shul which is at least a good mile and a quarter. And so, dear friends, I think that this go around with the chemo has been pretty successful.
I must credit the Neupogen for keeping me strong this time. But, as Andy just pointed out to me yesterday, the price is not cheap. Those seven injections, if I hadn't belonged to Kaiser, could have cost me $1570! Kaiser always shows you what you would have paid if you didn't have the coverage you have. We pay $20 for brand name prescriptions, $10 for generic. And as a friend at shul pointed out, that really is cheap for such a miracle/wonder drug. Still, I am grateful I have Kaiser and that I can get my drugs so cheaply and easily. And I am glad I don't have to choose between paying my grocery bill and getting the prescriptions I need!
Thursday, April 9, 2009
This has been a busy week. Andy's birthday was Tuesday and Passover started on Wednesday evening. We had a wee little birthday celebration on Tuesday night with a couple of friends and a tiny little cake. All day long people sent Andy happy birthday emails which really cheered him up. Honestly, I don't know why we don't just celebrate Andy's birthday on his half birthday instead of trying to do something so close to the end of tax season. Perhaps we will do that next year.
I was busy for a couple of days getting things in order, more or less, to celebrate the Passover. Andy and I decided that between the two of us we would not be dependable enough to keep a promise to go to a Seder either with friends or at our shul. We decided instead to just be the two of us at home. That way if one of us got sick or were just too tired we wouldn't have to discreetly bow out of a Seder. Of course, Wednesday turned out to be the last day of my injections of the Neupogen and the worst part of experiencing side effects. The bones in my lower back and hips were twinging with moderate pain. Nothing I couldn't deal with but debilitating when you are busy putting together a holiday meal. Nevertheless, we had a lovely Seder and we felt very good about it.
Now, however, my body is dealing with a change in diet and again I am having digestive issues. It wouldn't seem like a body would object to matzo. Such a harmless piece of food. Honestly, I don't know why the tummy cries when I eat it. Well, not so much the tummy but the process after the tummy. We are eating even more healthily than ever, Passover does that to you. Only foods that are "allowed" pass our lips. Lots of good fresh vegetables and fruits. No rice, nothing that started out as a grain except matzo and matzo meal. So nothing that has corn or corn syrup, nothing with safflower, soy or any of those grains or their end products. Also no legumes or foods that resemble legumes like peanuts. I was despairing because I didn't find any Kosher for passover salad dressings at the store this year (they typically use cottonseed oil as their base) when all of a sudden I had a brain storm. For heaven's sake, Mardie, just get back to the basics. What are you craving right now? A happy green salad with a creamy dressing? Well, then, go for it. I went to the store, bought some Roquefort cheese, sour cream, and nonfat unflavored yogurt. Then I went home and looked up recipes for Roquefort dressing. Most call for Worcestershire sauce and mayonnaise. Well, my tummy generally objects to mayonnaise so that was easy to drop and replace with the yogurt. And just like mayonnaise, Worcestershire sauce has ingredients that aren't allowed so I just dropped it. I mashed up the cheese with the sour cream and yogurt, added lemon juice, minced garlic, minced onion and kosher for passover balsamic vinegar. Let it sit in the refrigerator for a little while and oh, my goodness. I haven't tasted salad dressing this good since I can't say when. Why do I even bother to buy bottled dressing? Another by-product of Passover. Every year we have to be very creative with our meals and it always comes down to going back to basics. In ingredients and preparation. Yummy, simple, healthy food.
So today is the day when last time around (cycle one of chemotherapy) I got so sick and ended up in the ER. With the Neupogen shots I kept my white blood cell count up and hopefully, I am in much better shape than I was last time. I do feel better. No swollen, sensitive gums, no headache, no fever, no extreme tiredness. I think we got this one licked this time.
I was just observing to a friend this morning that the hills are still so green. Two years ago, on March 31st, I attended the lovely wedding of two friends up on Mt. Diablo. Everything was green, the wildflowers were blooming and it was a perfect day, in a perfect setting for two wonderful people to start their lives out together. Two weeks later, the hills had already turned golden. I remember remarking to someone that the wedding had been so perfectly timed to catch Mt. Diablo on a pleasantly warm day but still have the green of the hillsides. Today, as I look out the back window onto the verdant slope above me, I think that we will be able to enjoy our spring a little longer than usual because of the late rains we've had. But I am selfish enough to hope that when Sunday comes around the sun will come out and shine for the brunch our neighbor's hold every year around this time. Andy and I often can't actually eat anything except the fruit because it is during Passover, but it is so much fun talking to our neighbors, our friends who have moved away, the offspring of neighbors and friends and people that we have met one way or another over the years through this event. I think in all the years that we have lived here it has rained only once. It just made for cozier fellowship in the house instead of in the yard!
I was busy for a couple of days getting things in order, more or less, to celebrate the Passover. Andy and I decided that between the two of us we would not be dependable enough to keep a promise to go to a Seder either with friends or at our shul. We decided instead to just be the two of us at home. That way if one of us got sick or were just too tired we wouldn't have to discreetly bow out of a Seder. Of course, Wednesday turned out to be the last day of my injections of the Neupogen and the worst part of experiencing side effects. The bones in my lower back and hips were twinging with moderate pain. Nothing I couldn't deal with but debilitating when you are busy putting together a holiday meal. Nevertheless, we had a lovely Seder and we felt very good about it.
Now, however, my body is dealing with a change in diet and again I am having digestive issues. It wouldn't seem like a body would object to matzo. Such a harmless piece of food. Honestly, I don't know why the tummy cries when I eat it. Well, not so much the tummy but the process after the tummy. We are eating even more healthily than ever, Passover does that to you. Only foods that are "allowed" pass our lips. Lots of good fresh vegetables and fruits. No rice, nothing that started out as a grain except matzo and matzo meal. So nothing that has corn or corn syrup, nothing with safflower, soy or any of those grains or their end products. Also no legumes or foods that resemble legumes like peanuts. I was despairing because I didn't find any Kosher for passover salad dressings at the store this year (they typically use cottonseed oil as their base) when all of a sudden I had a brain storm. For heaven's sake, Mardie, just get back to the basics. What are you craving right now? A happy green salad with a creamy dressing? Well, then, go for it. I went to the store, bought some Roquefort cheese, sour cream, and nonfat unflavored yogurt. Then I went home and looked up recipes for Roquefort dressing. Most call for Worcestershire sauce and mayonnaise. Well, my tummy generally objects to mayonnaise so that was easy to drop and replace with the yogurt. And just like mayonnaise, Worcestershire sauce has ingredients that aren't allowed so I just dropped it. I mashed up the cheese with the sour cream and yogurt, added lemon juice, minced garlic, minced onion and kosher for passover balsamic vinegar. Let it sit in the refrigerator for a little while and oh, my goodness. I haven't tasted salad dressing this good since I can't say when. Why do I even bother to buy bottled dressing? Another by-product of Passover. Every year we have to be very creative with our meals and it always comes down to going back to basics. In ingredients and preparation. Yummy, simple, healthy food.
So today is the day when last time around (cycle one of chemotherapy) I got so sick and ended up in the ER. With the Neupogen shots I kept my white blood cell count up and hopefully, I am in much better shape than I was last time. I do feel better. No swollen, sensitive gums, no headache, no fever, no extreme tiredness. I think we got this one licked this time.
I was just observing to a friend this morning that the hills are still so green. Two years ago, on March 31st, I attended the lovely wedding of two friends up on Mt. Diablo. Everything was green, the wildflowers were blooming and it was a perfect day, in a perfect setting for two wonderful people to start their lives out together. Two weeks later, the hills had already turned golden. I remember remarking to someone that the wedding had been so perfectly timed to catch Mt. Diablo on a pleasantly warm day but still have the green of the hillsides. Today, as I look out the back window onto the verdant slope above me, I think that we will be able to enjoy our spring a little longer than usual because of the late rains we've had. But I am selfish enough to hope that when Sunday comes around the sun will come out and shine for the brunch our neighbor's hold every year around this time. Andy and I often can't actually eat anything except the fruit because it is during Passover, but it is so much fun talking to our neighbors, our friends who have moved away, the offspring of neighbors and friends and people that we have met one way or another over the years through this event. I think in all the years that we have lived here it has rained only once. It just made for cozier fellowship in the house instead of in the yard!
Thursday, April 2, 2009
Chemo: Round 2, part 2
I wake up at some ungodly hour after very short stretches of slumber. I decide to go downstairs and read and before long Andy joins me. We have breakfast, I shower, take my pills and we decide to go on down to Kaiser even if it is early. I check in and wait briefly. My oncologist apparently comes in early too. We talk, she removes the last stitch that refuses to dissolve and can't be pulled out by my gentle tug. It seems the knot is under the skin but Dr. Liu gets it out. She is wonderful! She also says there isn't any reason for me to wear a mask when I go out. yayyy. I really don't like wearing it. It is hard to breathe through it. Now we are sent to the chemotherapy waiting room which is just next door. But I am quite early so we wait until my appointment time. This is not a complaint. I enjoy people watching and am an inveterate eaves dropper. Chemo patients do like to chat with one another. One guy observes my pink bandanna and assures me that he was in my same hair situation last year. He now sports a thick headful of dark curly hair and I should expect the same. I smile and thank him. Finally we are called in. I am weighed and and have gained five pounds. This will not do. Must walk more. Oh, they don't scold me. I am scolding myself.
I get settled in my chemo chair and discover that the chemo nurse is the same nurse my friend Christa had 20 years ago! And she remembers Christa. She explains that Christa was a interesting patient and 20 years ago there weren't many chemo patients so it is easy to remember the special ones. She asks about Christa and is pleased at my report. Then the surprise comes. I am getting all my chemo drugs and I will be self injecting a new drug for seven days! What, no one told about this? Nope, this is news to me. But it is down in the orders. It seems because of my visit to the ER the trials people want me to bolster my white cell count and this new drug Filgrastim (Neupogen) will do that. Yikes, give myself a shot....I don't think so. I panic for a moment. Andy is not going to be able to help me with this, I am sure. What shall I do? Then, in a flash, I realize there is an answer. If she will agree which I think she will. I immediately call my good friend Jane and of course, she is willing, eager and able. Not only was she the Lead library media specialist and my boss at WCSD, but before that she was a nurse! I ask if she would mind coming over to the chemo clinic to listen to the instructions even if she does know what is what. Jane is a dear and says of course. And an hour or so later we sit and get instructions from my chemo nurse. And I'm thinking the chemo nurse could see that Jane was completely okay with giving the shots. Thank you, Jane!
But once again I jump ahead. I had talked Andy into not staying the whole time this time around. Last time I slept through most of the chemo treatment and figured I would do so again. But with the prospect of this new drug injection thrown in and with my talking to other people nearby I never got a chance to sleep. And the routine was a lot shorter this time because they could see that I tolerated a faster drip. After I was released I called Andy to pick me up but warned him that I had to pick up a prescription. By the time I was finished in the pharmacy I could see the old red mustang convertible sitting in the parking lot and this cool looking dude in a driving cap sitting there waiting for me. I jumped into the car and explained the new development with the injections. He agreed that he would not be up to doing it for me and was extremely grateful to Jane. When I got home I was really beat so I took a better than three hour nap. Dinner was already delivered from our next door neighbors and what a feast it was! Just the perfect meal for an after chemo treatment. Thank you, Karen and Kathy! And we also got another delivery of won ton soup and yummy chocolate cake for an off day. What a treat! Thank you Catherine!
Today is now Thursday. I slept better than I expected. Had my cup of coffee and then called Jane to see if she could do the injection. She said come on down, (actually she offered to come up to me but I figured she is doing me the favor and if I can, I will go down to her). She is a very good sticker! No pain at all. I feel as though I already am feeling stronger from this but that must be all in my head. Nothing could work that fast! And so I am into round two and still swinging. This is really okay. I am going to make it in style! I am invincible. I am the slayer!
I get settled in my chemo chair and discover that the chemo nurse is the same nurse my friend Christa had 20 years ago! And she remembers Christa. She explains that Christa was a interesting patient and 20 years ago there weren't many chemo patients so it is easy to remember the special ones. She asks about Christa and is pleased at my report. Then the surprise comes. I am getting all my chemo drugs and I will be self injecting a new drug for seven days! What, no one told about this? Nope, this is news to me. But it is down in the orders. It seems because of my visit to the ER the trials people want me to bolster my white cell count and this new drug Filgrastim (Neupogen) will do that. Yikes, give myself a shot....I don't think so. I panic for a moment. Andy is not going to be able to help me with this, I am sure. What shall I do? Then, in a flash, I realize there is an answer. If she will agree which I think she will. I immediately call my good friend Jane and of course, she is willing, eager and able. Not only was she the Lead library media specialist and my boss at WCSD, but before that she was a nurse! I ask if she would mind coming over to the chemo clinic to listen to the instructions even if she does know what is what. Jane is a dear and says of course. And an hour or so later we sit and get instructions from my chemo nurse. And I'm thinking the chemo nurse could see that Jane was completely okay with giving the shots. Thank you, Jane!
But once again I jump ahead. I had talked Andy into not staying the whole time this time around. Last time I slept through most of the chemo treatment and figured I would do so again. But with the prospect of this new drug injection thrown in and with my talking to other people nearby I never got a chance to sleep. And the routine was a lot shorter this time because they could see that I tolerated a faster drip. After I was released I called Andy to pick me up but warned him that I had to pick up a prescription. By the time I was finished in the pharmacy I could see the old red mustang convertible sitting in the parking lot and this cool looking dude in a driving cap sitting there waiting for me. I jumped into the car and explained the new development with the injections. He agreed that he would not be up to doing it for me and was extremely grateful to Jane. When I got home I was really beat so I took a better than three hour nap. Dinner was already delivered from our next door neighbors and what a feast it was! Just the perfect meal for an after chemo treatment. Thank you, Karen and Kathy! And we also got another delivery of won ton soup and yummy chocolate cake for an off day. What a treat! Thank you Catherine!
Today is now Thursday. I slept better than I expected. Had my cup of coffee and then called Jane to see if she could do the injection. She said come on down, (actually she offered to come up to me but I figured she is doing me the favor and if I can, I will go down to her). She is a very good sticker! No pain at all. I feel as though I already am feeling stronger from this but that must be all in my head. Nothing could work that fast! And so I am into round two and still swinging. This is really okay. I am going to make it in style! I am invincible. I am the slayer!
Chemo: Round 2, part I
Chemo second time around isn't nearly so daunting. I was more concerned about prepping myself the day and evening before than I was about the visit itself. And yet, as in any marathon, nothing is ever the same so I was in for a little surprise. But once again I get ahead of myself. Let's back up a couple of days and fill in the blanks.
This part was supposed to be a blog a couple of days ago but I never got around to it. So let's pretend it is Tuesday and I am just finishing up the day.
I have just two things to say. 1) Best laid plans of mice and men..... and 2) Never a dull moment.
I had planned on going in to have my blood drawn on Monday so that there would be plenty of time if I needed to go back because of any problems. But a friend suggested that the longer I put it off, the better my readings would be so I should wait until Tuesday. Okay, that made sense to me and still does. But I didn't want to be caught in all the parking traffic on Tuesday afternoon at Kaiser so I decided to make an early day of it and go in right when the lab opened at 7. I figured I'd be in and out in a matter of moments. Lo and behold, the parking deck was full up to the third floor already and when I pulled my number at the lab check in I was number 16 at 7:05! So I waited a good 20 minutes before I even registered. No matter. It was fine. I read my latest mystery/thriller. Daniel Silva is the author and if you like European mystery/thrillers you might like to give him a try. Read the ones with Gabriel Allon as the protagonist. Anyway, I finally got to register and then had to wait to be called. Maybe another 10 minutes. The draw took just a few moments. And she wasn't an intern so it was painless. By the time I got home at 9 the results were already being posted. Shoot! I forgot to tell them I am a clumper. My platelets clumped. I figured I would probably have to go back and do the draw again. Darn! So I sent an email to my oncologist asking if I should go back. Got an autoresponse that she isn't in. Double darn. I tried calling the clinical trials nurse. She was out until heaven knows when but left an alternate number. I called it and I got voice mail. I tried another alternate number and again got voice mail. But this person did call back after an hour or so and looked at the test results and said it was okay. I probably didn't need to go back. Little did I realize she was looking at the wrong test. Because later on in the early afternoon my oncologist, who was not working that day but obviously was checking her emails, sent me an email to please go back and ask them to draw my blood into a citrate media tube. So I printed out the email, printed out the test results and scurried down to Kaiser again. Sigh. Now the parking garage was full to the top. Fifth floor. I found a space and walked on over to the lab in the basement. It was just past 2 p.m. There is no one waiting! I grabbed a ticket and it was the next number to be called. I explained the problem and registered and before I got settled to wait, my number was again called and I got to the draw station. And then I get it. Everyone but me has figured out that the interns work in the afternoon so any one who has a choice chooses not to be drawn then. I explained my problem and she understood citrate but not media tube. Funny, because I understood what media tube probably meant but didn't know about the citrate too much but maybe it is some kind of acidic media that prevents clumping? So I told her I am a clumper and that there is a special tube she has to draw the blood into. She referred to her supervisor and called me a clumper. The supervisor lowered her voice and said that I shouldn't be referred to as a clumper, it doesn't sound nice. I insinuated myself into the conversation and explained that I called myself a clumper and that is what I am so why say anything else? I said this with a smile and a chuckled and so everyone was happy. The supervisor explained to the intern that she will need to use a lavender vial and another colored one (maybe it was blue?). Now I was nervous because this intern was probably straight out of the classroom and my poor arm is beginning to look like a junkie's arm. But I tried to relax and she stuck the needle in after many pats on the crook of my arm. Now it is my turn to apologize. She did a lovely job. I barely felt it and I have next to no bruise. It was just fine. I told her she was a good sticker and she seemed pleased. I toddle on home and do all the things that I needed to do to prepare for my visit to the chemo room the next day. Hydrating like crazy, taking a stool softener, drinking my fiber filled smoothie a little later than normal. Taking my decadron which prevents a good night's sleep. I am prepared. (to be continued in part 2)
This part was supposed to be a blog a couple of days ago but I never got around to it. So let's pretend it is Tuesday and I am just finishing up the day.
I have just two things to say. 1) Best laid plans of mice and men..... and 2) Never a dull moment.
I had planned on going in to have my blood drawn on Monday so that there would be plenty of time if I needed to go back because of any problems. But a friend suggested that the longer I put it off, the better my readings would be so I should wait until Tuesday. Okay, that made sense to me and still does. But I didn't want to be caught in all the parking traffic on Tuesday afternoon at Kaiser so I decided to make an early day of it and go in right when the lab opened at 7. I figured I'd be in and out in a matter of moments. Lo and behold, the parking deck was full up to the third floor already and when I pulled my number at the lab check in I was number 16 at 7:05! So I waited a good 20 minutes before I even registered. No matter. It was fine. I read my latest mystery/thriller. Daniel Silva is the author and if you like European mystery/thrillers you might like to give him a try. Read the ones with Gabriel Allon as the protagonist. Anyway, I finally got to register and then had to wait to be called. Maybe another 10 minutes. The draw took just a few moments. And she wasn't an intern so it was painless. By the time I got home at 9 the results were already being posted. Shoot! I forgot to tell them I am a clumper. My platelets clumped. I figured I would probably have to go back and do the draw again. Darn! So I sent an email to my oncologist asking if I should go back. Got an autoresponse that she isn't in. Double darn. I tried calling the clinical trials nurse. She was out until heaven knows when but left an alternate number. I called it and I got voice mail. I tried another alternate number and again got voice mail. But this person did call back after an hour or so and looked at the test results and said it was okay. I probably didn't need to go back. Little did I realize she was looking at the wrong test. Because later on in the early afternoon my oncologist, who was not working that day but obviously was checking her emails, sent me an email to please go back and ask them to draw my blood into a citrate media tube. So I printed out the email, printed out the test results and scurried down to Kaiser again. Sigh. Now the parking garage was full to the top. Fifth floor. I found a space and walked on over to the lab in the basement. It was just past 2 p.m. There is no one waiting! I grabbed a ticket and it was the next number to be called. I explained the problem and registered and before I got settled to wait, my number was again called and I got to the draw station. And then I get it. Everyone but me has figured out that the interns work in the afternoon so any one who has a choice chooses not to be drawn then. I explained my problem and she understood citrate but not media tube. Funny, because I understood what media tube probably meant but didn't know about the citrate too much but maybe it is some kind of acidic media that prevents clumping? So I told her I am a clumper and that there is a special tube she has to draw the blood into. She referred to her supervisor and called me a clumper. The supervisor lowered her voice and said that I shouldn't be referred to as a clumper, it doesn't sound nice. I insinuated myself into the conversation and explained that I called myself a clumper and that is what I am so why say anything else? I said this with a smile and a chuckled and so everyone was happy. The supervisor explained to the intern that she will need to use a lavender vial and another colored one (maybe it was blue?). Now I was nervous because this intern was probably straight out of the classroom and my poor arm is beginning to look like a junkie's arm. But I tried to relax and she stuck the needle in after many pats on the crook of my arm. Now it is my turn to apologize. She did a lovely job. I barely felt it and I have next to no bruise. It was just fine. I told her she was a good sticker and she seemed pleased. I toddle on home and do all the things that I needed to do to prepare for my visit to the chemo room the next day. Hydrating like crazy, taking a stool softener, drinking my fiber filled smoothie a little later than normal. Taking my decadron which prevents a good night's sleep. I am prepared. (to be continued in part 2)
Monday, March 30, 2009
My next round of chemo is coming up on Wednesday. I wonder if I will have any hair left by then. I just took a shower and as I washed my hair handfuls of it kept coming out. Yesterday it really started coming out in earnest. So, what does hair falling out feel like, you ask? It feels like your scalp is irritated because you are brushing your hair against the way it naturally falls. You know that feeling. Like when you try to part it where it has never been parted before. That feeling. I went for a walk with a friend and I showed her how it was coming out. I asked her if she had ever wanted to pull someones hair out? And then invited her to try it. We were both laughing. Then she called her two sons who were shooting hoops to join us. They looked a little uncertain but gingerly grabbed a few strands of hair. They looked pretty surprised at how much they pulled out with no effort. I think it is now time to start wearing the wig or the pretty pink bandanna or other scarves I have. There is really very little hair left on my head.
I'm sure I would surprise you all if I told you I love listening to John Madden on KCBS radio. But I do, even if I know virtually nothing about sports. He is a funny guy, pretty humble and if he doesn't know about something, he admits it. John was talking about Tiger Woods today and a golf tournament that Tiger is in. Tiger was down 5 strokes yesterday but I guess he did pretty well and either won the tournament or is still in the running. And the CBS reporter mentioned how happy Tiger looked when he did so well after coming off surgery on his knee. They both agreed that it must have been kind of scary for Tiger to take that year off, not knowing if, when he came back, he would be able to play as well as he used to play. But that smile showed that he knew he was back and he was still good. And it made me think about my running. I'm no Jimmy Muindi or Jeff Galloway but running is important to me. And I have been worrying about what I will be able to do once all this treatment is over with. But if Tiger can come back, so can I. I just need to focus on one goal at a time. And so I will.
I'm sure I would surprise you all if I told you I love listening to John Madden on KCBS radio. But I do, even if I know virtually nothing about sports. He is a funny guy, pretty humble and if he doesn't know about something, he admits it. John was talking about Tiger Woods today and a golf tournament that Tiger is in. Tiger was down 5 strokes yesterday but I guess he did pretty well and either won the tournament or is still in the running. And the CBS reporter mentioned how happy Tiger looked when he did so well after coming off surgery on his knee. They both agreed that it must have been kind of scary for Tiger to take that year off, not knowing if, when he came back, he would be able to play as well as he used to play. But that smile showed that he knew he was back and he was still good. And it made me think about my running. I'm no Jimmy Muindi or Jeff Galloway but running is important to me. And I have been worrying about what I will be able to do once all this treatment is over with. But if Tiger can come back, so can I. I just need to focus on one goal at a time. And so I will.
Sunday, March 22, 2009
Okay, maybe I have learned a lesson. Oh, well maybe not. I'm not sure what lesson I should have learned. What, you ask, is she talking about?
Friday afternoon I was feeling really beat. No energy. Very lethargic. Lynn brought us a fantastic shabbos dinner but I could barely keep my face off the table. I dozed on and off during the evening. I felt a little warm around 9 p.m so I took my temperature but the two "fancy" thermometers gave different readings. Neither, however, was at 100.5. That is the magic number for oncologists. If one is on chemotherapy and one's temperature reaches 100.5 one must call the advice nurse who will instruct you to go to the emergency room. We watched some TV and went to sleep about 10:30. My mouth felt a little tender but I couldn't feel any sores. About 3 a.m.I woke up to a pillow full of slobber. I guess my nose was stuffy and I had been sleeping with my mouth open. I decided to go downstairs and read a little and suck on some ice because now my mouth was feeling very tender. Around 4:30 Andy came downstairs and I took my temperature again. It was exactly 100.5 on the oral thermometer, a little less on the temple one. So I called Kaiser and they told me to come on down. When I arrived I remembered to tell them first thing that I was a chemo patient. With that announcement the registration lady immediately instructed me to put on a face mask and sit to the side where I wouldn't be near anyone. Actually there was hardly anyone there but there were a couple of kids who didn't look like they had broken bones. I felt that these precautions made sense. Within a few minutes the triage nurse beckoned me and took my vitals. I remembered to tell him I am in a clinical trial. My charts are supposedly marked but we are told to advise doctors and nurses when we are in the ER. The nurse kept being summoned by someone else in another room. My impression was that the other person was having a computer problem but I could be wrong about that. He also kept getting interrupted by the phone. Finally I made a remark about how busy he was and he explained that it had been even busier, earlier, when one patient had waited 5 hours to be seen by a doctor. I was surprised and said that I guessed I was lucky since I had hardly waited at all. He assured me that chemo patients get a high priority and that is why my wait was so short. So after the initial interview I was passed into the sub waiting room where I had to wait for an examining room to free up. But they decided they could do some stuff first even if there wasn't an actuve room available. I was put into a section of the ER that wasn't actually is use at that moment. My blood was drawn. I almost asked for someone else to do it but decided to let the guy go ahead. My mistake. He acted very unsure of himself and the jab was painful. Next time, I'm asking for a regular vampire person or lab tech or whatever they are called. Nurses don't always make the best blood drawers. I was also asked to donate a sample of my urine. And then back to the sub waiting room. This time I was half in a gown and still half dressed. The nurse said I could keep my pants on. Before long I was in a part of the ER that was functioning and I was put on a saline drip. My blood pressure was taken again. When I first arrived at Kaiser it had been 101/63. Now it had risen to 111 over 70. More like my normal BP. Finally the doctor arrived and we talked about what was happening. Which was really very little. I had a temperature, my gums were sore and by now I was getting a headache. No I hadn't taken any Tylenol. Didn't want to mask any of the symptoms. That I knew. So then he decided to do a physical. And that is when I remembered that I was still half dressed. The doctor looked pretty annoyed that my pants were still on and instructed the nurse to get me undressed. He disappeared for a while and when he came back was interested in my lungs and my neck. He was worried about meningitis. I had three x-rays taken. One in the exam room and then they wheeled me into the x-ray room and did two more. One full front and one to the side. At 10 a.m. the nurse said my white cell count was down to 1. That doesn't even seem possible to me but who am I to argue? I guess the chemo is really working. Anyway, the doctor came in and gave me a choice. I could stay in the hospital and take my antibiotics or I could go home and do the same. I really had no desire to stay there so I took my meds and headed home. But now I am to stay away from crowds and basically keep away from anyone just in case they are contagious with something. I am just going to stay home for a while until I have more energy. And now my throat is sore so I guess I do have something going on. Warm salty water gargle does help.
Funny thing though. I have a friend who lives in Oakland. Over that last three years she has had three parties that I have been invited to. Andy had his stroke on the date of the first party. The second one I can't remember what the deal was but he was again in the ER. And this time I was in the ER. I'm thinking that from now on, if she invites me to a party, I'm just going to pack a hospital bag and have it ready! Maybe that is what I have learned. No, I think I have learned that I am not as strong as I think I am and I must take better precautions. I need to think about how much I can be out and avoid crowded stores and school and the like. It just isn't worth the risk.
This week we have been showered with food and meals from many families. Thank you, Didi and Jerry, Liz and Keith, Lynn and Art, Jen and Brendan, Connie and Marc, and Jane and Eldon. Everything has been delicious. You are very much appreciated.
Friday afternoon I was feeling really beat. No energy. Very lethargic. Lynn brought us a fantastic shabbos dinner but I could barely keep my face off the table. I dozed on and off during the evening. I felt a little warm around 9 p.m so I took my temperature but the two "fancy" thermometers gave different readings. Neither, however, was at 100.5. That is the magic number for oncologists. If one is on chemotherapy and one's temperature reaches 100.5 one must call the advice nurse who will instruct you to go to the emergency room. We watched some TV and went to sleep about 10:30. My mouth felt a little tender but I couldn't feel any sores. About 3 a.m.I woke up to a pillow full of slobber. I guess my nose was stuffy and I had been sleeping with my mouth open. I decided to go downstairs and read a little and suck on some ice because now my mouth was feeling very tender. Around 4:30 Andy came downstairs and I took my temperature again. It was exactly 100.5 on the oral thermometer, a little less on the temple one. So I called Kaiser and they told me to come on down. When I arrived I remembered to tell them first thing that I was a chemo patient. With that announcement the registration lady immediately instructed me to put on a face mask and sit to the side where I wouldn't be near anyone. Actually there was hardly anyone there but there were a couple of kids who didn't look like they had broken bones. I felt that these precautions made sense. Within a few minutes the triage nurse beckoned me and took my vitals. I remembered to tell him I am in a clinical trial. My charts are supposedly marked but we are told to advise doctors and nurses when we are in the ER. The nurse kept being summoned by someone else in another room. My impression was that the other person was having a computer problem but I could be wrong about that. He also kept getting interrupted by the phone. Finally I made a remark about how busy he was and he explained that it had been even busier, earlier, when one patient had waited 5 hours to be seen by a doctor. I was surprised and said that I guessed I was lucky since I had hardly waited at all. He assured me that chemo patients get a high priority and that is why my wait was so short. So after the initial interview I was passed into the sub waiting room where I had to wait for an examining room to free up. But they decided they could do some stuff first even if there wasn't an actuve room available. I was put into a section of the ER that wasn't actually is use at that moment. My blood was drawn. I almost asked for someone else to do it but decided to let the guy go ahead. My mistake. He acted very unsure of himself and the jab was painful. Next time, I'm asking for a regular vampire person or lab tech or whatever they are called. Nurses don't always make the best blood drawers. I was also asked to donate a sample of my urine. And then back to the sub waiting room. This time I was half in a gown and still half dressed. The nurse said I could keep my pants on. Before long I was in a part of the ER that was functioning and I was put on a saline drip. My blood pressure was taken again. When I first arrived at Kaiser it had been 101/63. Now it had risen to 111 over 70. More like my normal BP. Finally the doctor arrived and we talked about what was happening. Which was really very little. I had a temperature, my gums were sore and by now I was getting a headache. No I hadn't taken any Tylenol. Didn't want to mask any of the symptoms. That I knew. So then he decided to do a physical. And that is when I remembered that I was still half dressed. The doctor looked pretty annoyed that my pants were still on and instructed the nurse to get me undressed. He disappeared for a while and when he came back was interested in my lungs and my neck. He was worried about meningitis. I had three x-rays taken. One in the exam room and then they wheeled me into the x-ray room and did two more. One full front and one to the side. At 10 a.m. the nurse said my white cell count was down to 1. That doesn't even seem possible to me but who am I to argue? I guess the chemo is really working. Anyway, the doctor came in and gave me a choice. I could stay in the hospital and take my antibiotics or I could go home and do the same. I really had no desire to stay there so I took my meds and headed home. But now I am to stay away from crowds and basically keep away from anyone just in case they are contagious with something. I am just going to stay home for a while until I have more energy. And now my throat is sore so I guess I do have something going on. Warm salty water gargle does help.
Funny thing though. I have a friend who lives in Oakland. Over that last three years she has had three parties that I have been invited to. Andy had his stroke on the date of the first party. The second one I can't remember what the deal was but he was again in the ER. And this time I was in the ER. I'm thinking that from now on, if she invites me to a party, I'm just going to pack a hospital bag and have it ready! Maybe that is what I have learned. No, I think I have learned that I am not as strong as I think I am and I must take better precautions. I need to think about how much I can be out and avoid crowded stores and school and the like. It just isn't worth the risk.
This week we have been showered with food and meals from many families. Thank you, Didi and Jerry, Liz and Keith, Lynn and Art, Jen and Brendan, Connie and Marc, and Jane and Eldon. Everything has been delicious. You are very much appreciated.
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