Last week I went over to old Mt. Diablo Hospital to the John Muir Cancer Center. I got tattooed and photographed and x-rayed. Tuesday I returned to have more measurements on the big KDS machine. It is a mobile radiation machine (mobile in the sense that it can move its focal point in many directions) that is attacking any residual cancer cells. The technicians who run the machine are very nice, very friendly and always have the nicest things to say to me. Today one of them thanked me because he said I am so easy to work with. I responded it was really no big deal to lie on my back with my arms stretched out above my head and my knees gently flexed and not move. He said they were grateful anyway. At that point I felt it necessary to say that I was extremely grateful to them. It was a draw.
So anyway, this is the way it will be from now for about 24 more treatments. 5 days a week I will go in, change into a gown, wait to be called from the waiting room, sit in a chair outside the radiation chamber, wait to be called and then climb onto the gurney that I will lie on to be irradiated. The whole procedure takes maybe 10 minutes once I'm on the gurney. They still mark me with a marking pen and take a few minutes to position the beam but the radiation itself takes no more than two or three minutes. I can't see a clock or camera and I'm not actually sure when it starts and ends so I'm not sure exactly how long it takes. Once I'm done I'm out and dressed and on the road in 5 minutes. Or at least that is the idea. Yesterday I stayed to talk to a nurse about what is going on. She showed me pictures of a breast with red and green lines across it showing where the radiation goes. I was thinking it was a standard picture they show everyone and then I realized that it was my folder and the photos were of me. The nurse explained that I might get tired around the third week and that my skin may get dry. She suggested aloe vera and a cream called Miaderm which is specifically for radiation dermatitis. Since one of the problems that can come up with radiation is that the skin gets so dry radiation has to be delayed for a few days, and since the company that makes Miaderm guarantees with this cream that won't happen, I decided to spring for the cream. Right now I'm using the aloe vera three times a day but I'll switch over to the cream when it arrives.
So far I'm enjoying (!?!) this new treatment but I'm thinking in a week or so I might get tired of driving over to Concord every day for a 15 minute visit. Until then though, it is kind of like the people in chemotherapy. Everyone is so kind and friendly.
Last week I got an email through facebook from someone whose name I didn't recognize. I almost deleted it thinking it was one of those responses to a comment made by a friend but not really something that I needed to look at. But for some reason I decided to click on it and lo and behold it was a friend from my old intermediate school. We've been emailing like crazy ever since, trying to catch up on what each of us has been doing for the last 47 years. And a lot can happen! I'm so thrilled that she found me and that I didn't delete that email! What a joy to have an old friend come back into one's life!
Thursday, July 30, 2009
Wednesday, July 22, 2009
Chemo Light!
Today I had my first chemo light. I wasn't sure what to anticipate. It seemed like it was too good to be true. Just one drip? Just the herceptin? Can't be. There must be a catch. And yet, after seeing the doctor and having a few questions answered like can I really get rid of those awful pills that I have to take before chemo? (yes) and can anything be done about the neuropathy (yes), I strolled over to the chemo side of the offices and had the chemo. It was administered by a nurse I had before. A very pleasant lady who remembered having graham crackers with her milk in kindergarten, just like I remembered. Anyway. She put the saline line into the port and then the herceptin and little more than 45 minutes later I was off to Starbucks! Yippee skippy! I can do this with my eyes closed. Actually, like Pavlov's dog salivating at the sound of the bell, after she put in the IV, I started to nod off as I did with the super chemo. But there was no reason to do that. I didn't have benadryl or compasine to make me sleepy. But because I was used to feeling sleepy after the saline and other drips started, I dozed off. Silly me! The nicest part was being able to drive home and being able to do stuff afterwards, not like before when I was out for the day. And tomorrow I'm sure my digestive processes will be just fine. I think I am on the road to normal. Whoo hoo!
Monday, July 20, 2009
How I Spent my Summer Vacation....
Yesterday I woke up bright and early. I had a good breakfast of oatmeal and OJ. Took my vitamins and supplements. Drank some water. Then I drove down to the Rudgear Park and Ride. A few minutes after my arrival in drove my friends, Lois and Connie. They picked me up and off we drove to Golden Gate Park in San Francisco. We were on our way to participate in the San Francisco AIDS Walk.
Driving with these two good friends is kind of like driving with my sisters. Driver and Navigator at odds with one another in a good natured fashion. "What do you mean, turn left? Doesn't it say no left turn?". "Go ahead do it anyway. No one is looking". "But what about that Muni bus coming at us?" Don't pay attention to him, he'll move". "Hey lady, I have the light" "Don't give me that look".
In spite of all the drama, we made it in one piece to Sharon Meadow and the gathering place for the 2009 San Francisco AIDS Walk. It was amazing. It was a small gathering of friends, maybe 25,000 or so. Despite the numbers, everyone was eager to be obliging and there was a totally festive air. We walked in to the registration area at the tennis courts and were greeted with cheers and the clanging of cow bells. The registrars got us the pins that identified us as members of the San Francisco AIDS Foundation Team and papers that said we were entitled to a tee shirt and lunch ticket at the SFAF booth. So off we went to find that booth. Before we found it though we were plied by dozens of volunteers carrying boxes of all kinds of food and drink. Bananas, bagels, oatmeal bars, yogurt bars, fruit drinks, water. There was something for everyone and it was all free. And as we made our way to the SFAF tent I really began to get an idea of how many people and companies were involved. Starbucks, Chevron, FedEx, Wachovia/Wells Fargo, Kaiser, Gap, Williams-Sonoma. Everywhere I turned there were tents and people in their team tee shirts milling around. And it wasn't just employees of companies. Whole families were taking part too. It was a truly lovely sight.
At the SFAF booth we got our lunch tickets and our team shirts. Then we went off to the awards booth to get our extra "stuff" for having raised a certain amount of money. Chico tote bags, water bottles and a cool SF AIDS Walk shirt. Very nice indeed.
By this time we had added Allen and Marcia to our group and soon Zainab joined us. We listened to some speeches, took part in some warmup boogying and listened to a very fine poet whose name eludes me right now. Then we strolled over to hippy hill where our SFAF group had its picture taken. Finally we were led to the front of the Walk line. At 10:30 the walk began. It was only a 10K so it was literally a stroll in the park for 5 of the 6 of us. We've all done marathons except for Marcia. But Marcia has done the 10K Mayor's Walk in Honolulu so she has experience. Although we were part of the SFAF team I felt we needed a further indentifying moniker. We sort of decided on "The East Bay Fabulous Five". (Before we started our walk we lost Zainab but found her again at the end). As usual, Allen was our pace group leader. In marathon training that means that he has to tell us when to walk and when to run. For this event it merely meant he had to remind us to hydrate. The day was on again off again sunny. Sometimes the clouds rolled in making it a little chilly but generally it was sunny and warm. We were serenaded by a number of bands including the Cal and Stanford bands. There were also radio stations along the route to cheer us on. And there were portions of the AIDS quilt on display in two different places. Some of the quilt pieces were from corporations which had employees they wanted to memorialize. Some of the quilt pieces were from family members. There was a sweet one that just had a stick figure of a woman and said something like, "I miss you Mommy, Love, Justin" Very, very touching.
The 10K was marred only at the very beginning by a guy standing across the street on the sidelines who felt it necessary to heckle the walkers. But bless the Sisters of Perpetual Indulgence! They stood across the street from him but between him and the walkers and just cheered us on. He was easily and quickly forgotten.
The 10K took us about 2 and a half hours and before we knew it we were back at the start. Again, there was food everywhere. Ice cream bars, bananas, and chips and drinks. And the Wells Fargo contingent honored our lunch tickets with a pasta, salad and cookie lunch. It hit the spot. We collected our finishers certificates and travelled back to the East Bay. A wonderful time was had by all. I saw only smiles and heard only happy voices all day long.
We were there to honor and remember those who had fallen to HIV/AIDS and encourage those who live with it. We hope that soon there will be a cure. But until there is we will help SFAF to help those who live with it here in the Bay area and around the world.
Driving with these two good friends is kind of like driving with my sisters. Driver and Navigator at odds with one another in a good natured fashion. "What do you mean, turn left? Doesn't it say no left turn?". "Go ahead do it anyway. No one is looking". "But what about that Muni bus coming at us?" Don't pay attention to him, he'll move". "Hey lady, I have the light" "Don't give me that look".
In spite of all the drama, we made it in one piece to Sharon Meadow and the gathering place for the 2009 San Francisco AIDS Walk. It was amazing. It was a small gathering of friends, maybe 25,000 or so. Despite the numbers, everyone was eager to be obliging and there was a totally festive air. We walked in to the registration area at the tennis courts and were greeted with cheers and the clanging of cow bells. The registrars got us the pins that identified us as members of the San Francisco AIDS Foundation Team and papers that said we were entitled to a tee shirt and lunch ticket at the SFAF booth. So off we went to find that booth. Before we found it though we were plied by dozens of volunteers carrying boxes of all kinds of food and drink. Bananas, bagels, oatmeal bars, yogurt bars, fruit drinks, water. There was something for everyone and it was all free. And as we made our way to the SFAF tent I really began to get an idea of how many people and companies were involved. Starbucks, Chevron, FedEx, Wachovia/Wells Fargo, Kaiser, Gap, Williams-Sonoma. Everywhere I turned there were tents and people in their team tee shirts milling around. And it wasn't just employees of companies. Whole families were taking part too. It was a truly lovely sight.
At the SFAF booth we got our lunch tickets and our team shirts. Then we went off to the awards booth to get our extra "stuff" for having raised a certain amount of money. Chico tote bags, water bottles and a cool SF AIDS Walk shirt. Very nice indeed.
By this time we had added Allen and Marcia to our group and soon Zainab joined us. We listened to some speeches, took part in some warmup boogying and listened to a very fine poet whose name eludes me right now. Then we strolled over to hippy hill where our SFAF group had its picture taken. Finally we were led to the front of the Walk line. At 10:30 the walk began. It was only a 10K so it was literally a stroll in the park for 5 of the 6 of us. We've all done marathons except for Marcia. But Marcia has done the 10K Mayor's Walk in Honolulu so she has experience. Although we were part of the SFAF team I felt we needed a further indentifying moniker. We sort of decided on "The East Bay Fabulous Five". (Before we started our walk we lost Zainab but found her again at the end). As usual, Allen was our pace group leader. In marathon training that means that he has to tell us when to walk and when to run. For this event it merely meant he had to remind us to hydrate. The day was on again off again sunny. Sometimes the clouds rolled in making it a little chilly but generally it was sunny and warm. We were serenaded by a number of bands including the Cal and Stanford bands. There were also radio stations along the route to cheer us on. And there were portions of the AIDS quilt on display in two different places. Some of the quilt pieces were from corporations which had employees they wanted to memorialize. Some of the quilt pieces were from family members. There was a sweet one that just had a stick figure of a woman and said something like, "I miss you Mommy, Love, Justin" Very, very touching.
The 10K was marred only at the very beginning by a guy standing across the street on the sidelines who felt it necessary to heckle the walkers. But bless the Sisters of Perpetual Indulgence! They stood across the street from him but between him and the walkers and just cheered us on. He was easily and quickly forgotten.
The 10K took us about 2 and a half hours and before we knew it we were back at the start. Again, there was food everywhere. Ice cream bars, bananas, and chips and drinks. And the Wells Fargo contingent honored our lunch tickets with a pasta, salad and cookie lunch. It hit the spot. We collected our finishers certificates and travelled back to the East Bay. A wonderful time was had by all. I saw only smiles and heard only happy voices all day long.
We were there to honor and remember those who had fallen to HIV/AIDS and encourage those who live with it. We hope that soon there will be a cure. But until there is we will help SFAF to help those who live with it here in the Bay area and around the world.
Monday, July 13, 2009
CAT Scan
Monday morning, bright and early, Andy and I headed out to the John Muir Cancer Center in Concord. In February I had met with Dr. Levine, my radiologist, to discuss my radiation treatment. Monday was my first appointment after super chemotherapy was finished.
I was led into a changing room where I donned the standard hospital gown. I waited in a little waiting room until a technician called my name. She took me to the CAT scan room. There she and an interning technician prepared me for the CAT scan and my body art....Well, not really art. But they marked my breast and lymph area with markers and then gave me three tiny tattoos so when I start radiation they always aim for the correct places. These tats are the size of a pinprick so it was even hard for me to figure out where they were afterwards. The CAT scan took just a couple of minutes. The tattooing took just a couple of seconds. Dr. Levine came in and told me that I can't actually start radiation for another couple of weeks. They want to make sure I'm okay from the chemo.
So now it won't begin until the first week of August. Sigh. This means I'll be in radiation when school starts. I'm hoping it won't keep me from going back to work. The people at the JMCC seemed very nice and were eager to make me comfortable and happy. Radiation will take place 5 days a week for 5 or 6 weeks. The procedure itself just a takes a minute or so. But I'm glad it is a nice place to visit.
I'm really looking forward to this next part of my adventure. So far, it hasn't been all that difficult. But I mustn't get ahead of myself here. I have a MUGA again and more lab tests. I must pass them first before I move on. It is always something, isn't it? I hope I get an 800 on each of them....tee hee!
I was led into a changing room where I donned the standard hospital gown. I waited in a little waiting room until a technician called my name. She took me to the CAT scan room. There she and an interning technician prepared me for the CAT scan and my body art....Well, not really art. But they marked my breast and lymph area with markers and then gave me three tiny tattoos so when I start radiation they always aim for the correct places. These tats are the size of a pinprick so it was even hard for me to figure out where they were afterwards. The CAT scan took just a couple of minutes. The tattooing took just a couple of seconds. Dr. Levine came in and told me that I can't actually start radiation for another couple of weeks. They want to make sure I'm okay from the chemo.
So now it won't begin until the first week of August. Sigh. This means I'll be in radiation when school starts. I'm hoping it won't keep me from going back to work. The people at the JMCC seemed very nice and were eager to make me comfortable and happy. Radiation will take place 5 days a week for 5 or 6 weeks. The procedure itself just a takes a minute or so. But I'm glad it is a nice place to visit.
I'm really looking forward to this next part of my adventure. So far, it hasn't been all that difficult. But I mustn't get ahead of myself here. I have a MUGA again and more lab tests. I must pass them first before I move on. It is always something, isn't it? I hope I get an 800 on each of them....tee hee!
ALA
Saturday morning at 7 a.m. I got a phone call. I hate getting calls that early during the summer. During the school year it isn't so bad. Maybe someone needs a ride to school or someone can't volunteer in the library and they just want to let me know. But who needs to call that early in the summer? It can only be bad news. So with great trepidation I answered. It was Sonia. But there was no tremor of sorrow or unhappiness in her voice. She sounded excited..." Guess where I am?" she asked me. For a moment, I couldn't think of anywhere she could be unless she was on the way to Lansing. So I said I don't know. But then she pressed me and all of a sudden I got it! "ALA!" (the American Library Association is having their yearly conference in Chicago) I shouted. She was in the exhibits hall and that is a sight to behold! Publishers from all over the nation and even from other countries come to ALA to show off their latest publications. Authors come to push their latest books. Library software and hardware companies come to show how they can help libraries provide better service with their wonderful products. And there are library furniture and library clothing and library posters and bookmarks and library this and library that. You can wander up and down the aisles and not see everything in one day. There are too many people to see and talk to and so many books to look at. But there was Sonia, first in line to get Kate DiCamillo's latest book. And Ms. DiCamillo was there to sign them. Sonia was in heaven and so was I, vicariously. There were other authors with new books too. Richard Peck has a new book coming out and so does Gennifer Choldenko. Sonia got them all. She spent more than half the day there Saturday and Sunday and couldn't stay away even Monday. There is always the chance more copies of some books might show up. She was a picky scavenger, there was just one of her and books get heavy. But apparently, she made out a like bandit. I can't wait to get the package in the mail and read them all! Thank you, Sonia!
Thursday, July 9, 2009
Lazy days of summer
When last I blogged I had just finished my final super chemo. I am hoping that the side effects I'm feeling will linger only briefly. My neuropathy is growing but after this next week perhaps it will begin to dissipate. I'm hoping so. My digestive system gave me a strong kick a couple of days ago. Just in case I had forgotten what super constipation is all about. And yet, I persevere.
My sisters came for a short visit and were very good about helping me drink enough liquids. Sister Rosie made a game of it and drank along with me. Sister Kathy used her iPhone to verify just about anything we talked about. It was actually fun. We enjoyed talking about growing up in our "interesting" household. Tried to remember neighbors names. I used to be good at that. Not anymore. Can't remember what someone tells me if it was five minutes ago. But that is something that will go away after all the super chemo gets through my system. I hope.
So right now I am finishing up a silly adult mystery and my next reads will be from WCI library. I must start reading middle school material now. I don't want to get back to school in August and not know what the current favorites are with the middle school set. I opened a box of books from Junior Library Guild yesterday and found a few that looked promising. I'll let you know.
Right now my energy level is uneven. I race around like a mad person when I feel I can get stuff done and then I conk out with no energy at all.
I have an appointment with the radiation people over at the John Muir Concord campus on Monday. I don't know when the actual radiation will commence but I hope it will be soon. Sooner started, sooner finished.
Helen sent me a cool pink bracelet from Holland America's Walk for the Cure. I'm glad the cruise industry is taking this up. I've done it on Princess but I didn't know other cruises did it too. On those days when there aren't any ports to call on it makes sense to have a fund raising walk and why not for breast cancer? Thank you, Helen!
I'm looking forward to the San Francisco AIDS Walk on July 19. Thank you to those of you who have donated to my account. And if you haven't yet there is still time. And if you want to wait, there will be the Mardie's Walnut Creek Marathon in November.....I'll catch you then!
My sisters came for a short visit and were very good about helping me drink enough liquids. Sister Rosie made a game of it and drank along with me. Sister Kathy used her iPhone to verify just about anything we talked about. It was actually fun. We enjoyed talking about growing up in our "interesting" household. Tried to remember neighbors names. I used to be good at that. Not anymore. Can't remember what someone tells me if it was five minutes ago. But that is something that will go away after all the super chemo gets through my system. I hope.
So right now I am finishing up a silly adult mystery and my next reads will be from WCI library. I must start reading middle school material now. I don't want to get back to school in August and not know what the current favorites are with the middle school set. I opened a box of books from Junior Library Guild yesterday and found a few that looked promising. I'll let you know.
Right now my energy level is uneven. I race around like a mad person when I feel I can get stuff done and then I conk out with no energy at all.
I have an appointment with the radiation people over at the John Muir Concord campus on Monday. I don't know when the actual radiation will commence but I hope it will be soon. Sooner started, sooner finished.
Helen sent me a cool pink bracelet from Holland America's Walk for the Cure. I'm glad the cruise industry is taking this up. I've done it on Princess but I didn't know other cruises did it too. On those days when there aren't any ports to call on it makes sense to have a fund raising walk and why not for breast cancer? Thank you, Helen!
I'm looking forward to the San Francisco AIDS Walk on July 19. Thank you to those of you who have donated to my account. And if you haven't yet there is still time. And if you want to wait, there will be the Mardie's Walnut Creek Marathon in November.....I'll catch you then!
Friday, July 3, 2009
Celebrations
Wednesday morning I went in for my last "super chemo". The nurses knew it was my last one and everyone was congratulating me. As if it were something I had actually accomplished! I guess surviving that last chemo session in June was reason enough. But this time everything went very smoothly. I pretty much zonked out once the benadryl and compazine kicked in. I remember the nurse waking me up once in a while when she had to rescan my hospital bracelet each time she started a new drip but beyond that I don't remember much this time. Oh, I did talk to another patient that I saw last time. He has a great sense of humor. It seems some of his friends don't know how to deal with his cancer diagnosis so he is telling people he is getting chemo for hemorrhoids. They can handle that! We traded a couple of stories and agreed that humor is the only way to get through all this stuff. But his chemo was pretty much finished by the time I got my first dose so we didn't chat more than that. I also talked to a woman who came in without the standard wig or head covering. She was totally bald and had the prettiest "Peace" with red roses temporary tattoo on the back of her head. I am so tempted! She said her granddaughters help her choose the tattoos and put them on for her. Anyone want to help me?
So, the nurses assure me that the "chemo light" I will be getting from now until March will be much easier on my system. I won't have to take all the pills I do now before and after chemo, I won't have to do the neupogen and there will be only one drug, the herceptin, being administered and it will only take half an hour. Well, I'll probably be there for an hour but the infusion will only be half an hour. My neuropathy should go away and I should feel a lot better. Of course, they weren't taking into account that in a couple of weeks I'll be starting radiation. I might just feel lousy from that but we won't blame it on "chemo light".
Yesterday I went to visit Kara and Morgan and new baby Jasper. It was a delightful visit. Jasper is a perfectly beautiful baby. Everyone is doing fine. No one is sleeping but they are surviving!
So, the nurses assure me that the "chemo light" I will be getting from now until March will be much easier on my system. I won't have to take all the pills I do now before and after chemo, I won't have to do the neupogen and there will be only one drug, the herceptin, being administered and it will only take half an hour. Well, I'll probably be there for an hour but the infusion will only be half an hour. My neuropathy should go away and I should feel a lot better. Of course, they weren't taking into account that in a couple of weeks I'll be starting radiation. I might just feel lousy from that but we won't blame it on "chemo light".
Yesterday I went to visit Kara and Morgan and new baby Jasper. It was a delightful visit. Jasper is a perfectly beautiful baby. Everyone is doing fine. No one is sleeping but they are surviving!
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