Hope everyone had a merry Christmas, happy Hanukah or is enjoying Kwanzaa. Sorry for not posting in more than a week. I was not feeling well during that time and I stayed off the computer for the most part. I am happy to report that my stomach is feeling much better, and I have a new medication to try following my next Doxil treatment. Hopefully that one will work without giving me a rash or other side effects.
Our friend Ward sent me this link today: http://www.youtube.com/watch?v=TWiXy55OHyY I enjoyed this humorous summary of the year's news and hope you will, too.
As we close out 2008 and look forward to 2009, I hope you remember more positive moments than negative. Although my health status has deteriorated with the discovery of the multiple bone metastases, I lost the hair on top of my head, Dr. K switched me to a more toxic chemotherapy agent and added Zometa, and following the radiation therapy the medical bills have grown by leaps and bounds, there is much to be thankful for this year. We spent time with many of our "far away" friends (Skip and Kathy, Chris and Ian, Anne and Andy, Ward and Melinda, Steve and Kate) and, of course, with our local friends. We visited several new places -- Paris, Venice, and Kerrville, Texas -- and several old favorites -- Las Vegas, Barcelona, Florence, and Rome. We sailed on two of our favorite ships, Brilliance and Liberty of the Seas, enjoyed our pool, ate delicious food and drank delicious wines all over the world, managed to pay all our bills, and bought a new car before the credit market dried up. My mom is still in relatively good health. I continue plugging away at my job and Ed is successfully doing his thing. We are looking forward to some trips in 2009 (perhaps we will end up in your neighborhood!) starting with our cruise on Solstice in March.
I wish all good things for you next year: happiness, the love of family and friends, good (or improved) health, and prosperity. And I'm sending you all a huge hug.
Wednesday, December 31, 2008
Tuesday, December 23, 2008
A little better
It turns out that I had a generic form of one of the antiemetic meds in our closet. I've gone from a person who only took Advil when my leg hurt following surgery to someone with so many prescription bottles in her closet that she doesn't know what she has. Anyway, I took a pill last night and again this morning, and I'm feeling a little better. I hope to get in two more pills today and then stop, since you cannot drink alcohol with this medication. I want it out of my system by tomorrow evening so I can enjoy the party. On the other hand, Ed is usually the designated driver, so maybe this year I should take a pass and let him have a drink. Does that count as a Christmas gift???
Despite my lack of holiday cheeriness, I know how blessed I am. If not for Ed, I don't know what I would do or how I would manage. Over the weekend, he insisted on rubbing moisturizer on my bald spot because it looked dry. That might not sound like much, but for a woman who is mortified by her hair loss, that was just the sweetest gesture. Like Ed, so many of you touch me with your love, support, encouragement and advice, and I hope that I let you know often enough and sincerely enough how much you mean to me and how much I love you. You are all why I keep plugging along -- well, that and my hope to get back to Paris next year.
If you are still shopping, wrapping, baking, decorating, or traveling, be careful, enjoy yourself, and try not to get too overwhelmed. Take a few minutes to count your blessings and enjoy the true warmth of the season.
Despite my lack of holiday cheeriness, I know how blessed I am. If not for Ed, I don't know what I would do or how I would manage. Over the weekend, he insisted on rubbing moisturizer on my bald spot because it looked dry. That might not sound like much, but for a woman who is mortified by her hair loss, that was just the sweetest gesture. Like Ed, so many of you touch me with your love, support, encouragement and advice, and I hope that I let you know often enough and sincerely enough how much you mean to me and how much I love you. You are all why I keep plugging along -- well, that and my hope to get back to Paris next year.
If you are still shopping, wrapping, baking, decorating, or traveling, be careful, enjoy yourself, and try not to get too overwhelmed. Take a few minutes to count your blessings and enjoy the true warmth of the season.
Monday, December 22, 2008
Trying to be positive
I'm not feeling any better today and seriously contemplated staying home. However, I'm working from home on Wednesday and am off on Thursday, so I decided to bite the bullet and come in. My stomach is still bothering me and now I'm really kicking myself for not taking the Aloxi or filling the anti-nausea meds the doctor prescribed on Thursday. I hope to be feeling better soon, as we have an annual Christmas Eve party to attend and I would like to be able to partake of all the goodies that our friend Sue makes. And what's a party without a glass of wine? My stomach can't even handle that the past few nights. Right now I'm struggling with a turkey sandwich, but I'm not getting very far. Maybe I'll try some applesauce.
I have to admit that this is not the happy holiday season that I usually enjoy. Between feeling so sick to my stomach, looking at my bald spots, having to wear a hat around the house most days lately because my head is cold, and thinking back to everything that's occurred this year (the port surgery, two types of chemo, radiation), I just feel a lack of my usual joy and positive spirit. I'm sure it's to be expected and I can't possibly be "rah rah" all the time, but it's put a damper on the Christmas season for me thus far. No, I'm not depressed, just not cheery, and this is the time of year when it's appropriate to be cheery. Once the nausea passes, I'm sure I'll feel better about life in general, but today I'm just blah. Forgive me, please...
We didn't get any snow to speak of in the most recent storm. It seems that each time a snowstorm approaches, the temperatures rise in our part of the state and all we get is rain. Okay, maybe a little sleet and/or freezing rain, but mainly rain. Today it's blustery and cold, cold, cold. It was 14 degrees when I arrived in the city this morning, and as of12:30 p.m., it's a balmy 18 degrees outside. Tomorrow the high is supposed to be in the mid-30s, and it's supposed to be rainy and 55 on Wednesday. Is this weird weather or what?
I hope to report back before Thursday that I'm feeling much better. Keep your fingers crossed.
I have to admit that this is not the happy holiday season that I usually enjoy. Between feeling so sick to my stomach, looking at my bald spots, having to wear a hat around the house most days lately because my head is cold, and thinking back to everything that's occurred this year (the port surgery, two types of chemo, radiation), I just feel a lack of my usual joy and positive spirit. I'm sure it's to be expected and I can't possibly be "rah rah" all the time, but it's put a damper on the Christmas season for me thus far. No, I'm not depressed, just not cheery, and this is the time of year when it's appropriate to be cheery. Once the nausea passes, I'm sure I'll feel better about life in general, but today I'm just blah. Forgive me, please...
We didn't get any snow to speak of in the most recent storm. It seems that each time a snowstorm approaches, the temperatures rise in our part of the state and all we get is rain. Okay, maybe a little sleet and/or freezing rain, but mainly rain. Today it's blustery and cold, cold, cold. It was 14 degrees when I arrived in the city this morning, and as of12:30 p.m., it's a balmy 18 degrees outside. Tomorrow the high is supposed to be in the mid-30s, and it's supposed to be rainy and 55 on Wednesday. Is this weird weather or what?
I hope to report back before Thursday that I'm feeling much better. Keep your fingers crossed.
Sunday, December 21, 2008
A brief update
I had my Doxil treatment on Thursday and the doctor and I agreed to no Aloxi and made certain that the Benadryl infusion was only 25 mg, not the 50 he prescribed last time. I took the treatment well and felt fine the rest of the day and evening. Friday I took myself in for Zometa depsite the fact that I drove through sleet, snow, freezing rain and, finally, rain. I felt fine again but took a Zantac for my stomach since I'm still suffering a bit from those 12 days of steriods while I was having the radiation.
Saturday I felt full of energy so I finished decorating the tree, made the bed, baked another batch of cookies, washed my wig, made a few overdue phone calls, caught up on our bills, and placed my final holiday online gift order. Unfortunately, beginning around lunchtime, my stomach really started to bother me. I took another Zantac then finally an Ativan to try to stave off the nausea. Today, I woke up tired despite having had a great night's sleep. So far today, I've had breakfast and a snack and watched some tv. Quite a difference from the past few days.
So, I think in the future I will take the Aloxi to prevent this nausea, even though I prefer to undermedicate and tough it out if necessary. This just seems like a waste of my time and I can't think of a good reason to feel miserable. I'm going to do some gift wrapping since I'm now running out of time, and then I'm going back to my chair in front of the tv. I apologize to those who have sent me notes (and photos) over the past few days, but I promise to respond tomorrow. Today I need to get done what I need to and then huddle under the covers.
Thanks for your understanding and patience!
Saturday I felt full of energy so I finished decorating the tree, made the bed, baked another batch of cookies, washed my wig, made a few overdue phone calls, caught up on our bills, and placed my final holiday online gift order. Unfortunately, beginning around lunchtime, my stomach really started to bother me. I took another Zantac then finally an Ativan to try to stave off the nausea. Today, I woke up tired despite having had a great night's sleep. So far today, I've had breakfast and a snack and watched some tv. Quite a difference from the past few days.
So, I think in the future I will take the Aloxi to prevent this nausea, even though I prefer to undermedicate and tough it out if necessary. This just seems like a waste of my time and I can't think of a good reason to feel miserable. I'm going to do some gift wrapping since I'm now running out of time, and then I'm going back to my chair in front of the tv. I apologize to those who have sent me notes (and photos) over the past few days, but I promise to respond tomorrow. Today I need to get done what I need to and then huddle under the covers.
Thanks for your understanding and patience!
Monday, December 15, 2008
10 shopping days until Christmas!
The weekend with Mom went well, though the visit was short and the days were busy. Ed helped out with the pre-arrival housecleaning, so I only had a few other things I wanted to get cleaned up before Mom arrived. During her visit, I baked two batches of cookies and began decorating the tree, plus made dinner Saturday night and breakfast Sunday morning. Each day I was pooped by 4 p.m., so I guess I still need to work on my stamina. She is coming back the first weekend in January to celebrate Christmas since I need to work December 26, the 31st and January 2.
My hair continues to fall out, albeit at a much slower rate. Mom was less shocked by my appearance than I expected, so I must have done a better job at preparing her in advance than I thought. Other than having sinus dripping problems (resulting in the cough) and getting tired in the late afternoon, I'm feeling pretty good. I restart Doxil treatments on Thursday the 18th and have the Zometa infusion on the 19th. That will begin the every four week routine until Dr. K decides to change it again. As I previously wrote, I'll have one more treatment in mid-January before having my scans again. At that time, I will also have a brain MRI prior to having a follow-up visit with Dr. Yamada, my radiation oncologist.
I hope you all had a lovely weekend, whatever you did and whomever you spent it with. Happy 30th anniversary to Melinda and Ward! Hope the rain in Carmel isn't dampening your visit.
My hair continues to fall out, albeit at a much slower rate. Mom was less shocked by my appearance than I expected, so I must have done a better job at preparing her in advance than I thought. Other than having sinus dripping problems (resulting in the cough) and getting tired in the late afternoon, I'm feeling pretty good. I restart Doxil treatments on Thursday the 18th and have the Zometa infusion on the 19th. That will begin the every four week routine until Dr. K decides to change it again. As I previously wrote, I'll have one more treatment in mid-January before having my scans again. At that time, I will also have a brain MRI prior to having a follow-up visit with Dr. Yamada, my radiation oncologist.
I hope you all had a lovely weekend, whatever you did and whomever you spent it with. Happy 30th anniversary to Melinda and Ward! Hope the rain in Carmel isn't dampening your visit.
Thursday, December 11, 2008
No waterworks yet
I guess the main issue with the bald spots is that they are a visible sign of my disease. Other than the scar on my left leg, which I rarely look at, there has been no other sign that I have cancer. That goes a long way in helping me believe that I'm not really "sick," despite having to go for treatments, scans, doctor visits and the like. Seeing bald patches on my head, on the other hand, not only makes the disease real, but it also makes it impossible to deny that I have tumors in my head. That is a scary reality, especially when I know that they didn't treat them all -- just the "important" one in my clivus and the one that was bothering me (along with a small one located nearby).
How does one wrap her mind around the idea of having tumors in her head? It's not easy. I suppose I view my disease as being part and parcel of my entire body, not as residing in specific areas. I mean, I KNOW I have at least one tumor in my lung and one in my ilium (blasted though it is now) and multiple tumors in my skull (three blasted as well), but I think about treating the cancer as a whole rather than concentrating on the individual tumors. Does that make any sense? I view myself as a normal person who happens to have cancer, which is why the bald spots are a shock since "normal" people don't suddenly get bald spots. Maybe that's also why I just keep "movin' and groovin'," doing whatever I have to do to treat the disease, and then getting back to my life as quickly and normally as possible. I don't consider myself a "cancer patient." I view myself as me with cancer. That's the best way I can explain it.
The metallic taste is gone and the utter exhaustion is gone, too, although the past two days I've been tired at the end of the day. I was able to enjoy a very small glass of wine Friday night and I haven't looked back since. My cough has returned at the same time as Ed's sinus problems, so we're still not sure whether it's caused by allergies or something disease related. Was it a coincidence that I didn't have the cough while I was on the steriod or during the period while I was still having that metallic taste (meaning the steriod wasn't out of my system yet)? I have no idea. No sign of anything on my back where the treatment to my ilium was performed, but I've been putting moisturizer on it daily as directed.
My mom is coming to stay overnight Saturday and we'll be baking pecan shortbreads this weekend. Last weekend's peanut butter cookies were okay, but nothing to write home about. We won't be using that recipe again. I still haven't gotten around to getting anything on the tree, but Mom can keep me company while I work on that. I hope that your holiday decorating is moving along at a faster pace than mine.
It's a crazy time of year, but make sure you take a few minutes each day just to relax and take a few deep breaths. And a glass of whatever you enjoy helps, too!
How does one wrap her mind around the idea of having tumors in her head? It's not easy. I suppose I view my disease as being part and parcel of my entire body, not as residing in specific areas. I mean, I KNOW I have at least one tumor in my lung and one in my ilium (blasted though it is now) and multiple tumors in my skull (three blasted as well), but I think about treating the cancer as a whole rather than concentrating on the individual tumors. Does that make any sense? I view myself as a normal person who happens to have cancer, which is why the bald spots are a shock since "normal" people don't suddenly get bald spots. Maybe that's also why I just keep "movin' and groovin'," doing whatever I have to do to treat the disease, and then getting back to my life as quickly and normally as possible. I don't consider myself a "cancer patient." I view myself as me with cancer. That's the best way I can explain it.
The metallic taste is gone and the utter exhaustion is gone, too, although the past two days I've been tired at the end of the day. I was able to enjoy a very small glass of wine Friday night and I haven't looked back since. My cough has returned at the same time as Ed's sinus problems, so we're still not sure whether it's caused by allergies or something disease related. Was it a coincidence that I didn't have the cough while I was on the steriod or during the period while I was still having that metallic taste (meaning the steriod wasn't out of my system yet)? I have no idea. No sign of anything on my back where the treatment to my ilium was performed, but I've been putting moisturizer on it daily as directed.
My mom is coming to stay overnight Saturday and we'll be baking pecan shortbreads this weekend. Last weekend's peanut butter cookies were okay, but nothing to write home about. We won't be using that recipe again. I still haven't gotten around to getting anything on the tree, but Mom can keep me company while I work on that. I hope that your holiday decorating is moving along at a faster pace than mine.
It's a crazy time of year, but make sure you take a few minutes each day just to relax and take a few deep breaths. And a glass of whatever you enjoy helps, too!
Wednesday, December 10, 2008
Hair...or the lack thereof
I officially have bald spots. Ed and Lydia G. both confirmed that I had a thin spot on the back top part of my skull, but today, I saw bald spots on each side of my head near the back. Now, you would think that with all the hair that's appeared in the shower, on the floor, on my pillow, and in the sink (as well as all over the house), I would have been prepared for this. NOT!! I didn't think I would be able to see it unless I held a mirror up to the back of my head and looked, and I hadn't decided if I really wanted to do that or not. I guess that decision is moot at this point.
I almost started to cry when I saw the first one and really had to stop myself from bawling when I saw the second one, but I realized that if I started crying, I'd never get myself together in time to get out the door for the bus, so I sucked it up. I don't know whether I'll be able to assimilate this sight before I break down or if a breakdown is inevitable. I'll be sure to let you know.
In the meantime, I apologize for not being as prompt as usual in getting back to those who have e-mailed me this week. It's been a little crazy at work (believe it or not), but I have read and saved your messages and I will be getting back to you soon. I promise!!
I almost started to cry when I saw the first one and really had to stop myself from bawling when I saw the second one, but I realized that if I started crying, I'd never get myself together in time to get out the door for the bus, so I sucked it up. I don't know whether I'll be able to assimilate this sight before I break down or if a breakdown is inevitable. I'll be sure to let you know.
In the meantime, I apologize for not being as prompt as usual in getting back to those who have e-mailed me this week. It's been a little crazy at work (believe it or not), but I have read and saved your messages and I will be getting back to you soon. I promise!!
Thursday, December 04, 2008
A holiday scene
I received this from a woman we sailed with last November. According to her e-mail, this house was decorated by an electrician who had lost his job...and presumably had lots of time on his hands. It almost looks computer generated, and it's pretty amazing. I can't imagine being his neighbor, though!
Wednesday, December 03, 2008
It has begun
This morning, small clusters (not big enough to call clumps) of my hair started coming out. As many of you know, I'm a woman with a LOT of hair, so I don't think I'm bald in those spots yet, but I'm now on my way. I have to say it was very disconcerting to run my fingers through my hair and keep pulling it off my scalp. It doesn't hurt at all, but it was upsetting. I can't imagine what it would feel like to lose all of my hair if I was upset about this.
Although I'm not as tired as I was, I'm starting to feel other after-effects. In addition to losing hair, my scalp is getting increasingly sensitive, as is my pelvic bone. My stomach is still bothering me and I'm still getting that metallic taste, although that has diminished somewhat. My skin is peeling, which I assume is a combination of the typical post-vacation post-tan occurrence and radiation-induced dry skin. Although my cough has improved 95%, I have been coughing more over the past three days. Who knows what's causing that. The good news is that the bone weary fatigue is gone and I'm left with simply being tired by the late afternoon. I'm sure that, too, will pass.
Last night I attended a birthday dinner with the woman I mentioned a few weeks ago who was recently diagnosed with breast cancer. Several of the women were suggesting that things (like cancer) happen for a reason, intimating that there is a lesson to be learned from the experience, which one may or may not ever figure out. On the way home, I gave that some thought, as I have done from time to time. Although I don't necessarily agree that things happen for a reason, I do think that unpleasant life experiences can change you in positive ways if you let them. Because of my cancer diagnosis, I've become a stronger, more assertive person. While I believe I have more patience with others most of the time, I have less patience for people who spend their time wishing their lives were different but either do nothing to change their circumstances or refuse to accept what is. (I guess that's not really a positive change.) I have more empathy for the different ways people deal with adversity. I embrace my age and each passing year as an accomplishment rather than a disappointment, and I try to appreciate all of my life's experiences rather than constantly looking forward to the next one. I appreciate my friends more than ever. I understand that the people who care about me are frustrated by their inability to change the course of my disease and so they try to help in some way -- and I try to let them. That's a tough change for an independent person. Now if I could only get someone to clean my house... LOL
As I always do at this time of year, despite its inherent insanity, I think of all of you and wish you peace, love, health, happiness and prosperity. Please take some time out of your busy schedule to reach out to someone and say how important she/he is in your life. That may be the greatest gift we can give each other -- as well as the least expensive.
Although I'm not as tired as I was, I'm starting to feel other after-effects. In addition to losing hair, my scalp is getting increasingly sensitive, as is my pelvic bone. My stomach is still bothering me and I'm still getting that metallic taste, although that has diminished somewhat. My skin is peeling, which I assume is a combination of the typical post-vacation post-tan occurrence and radiation-induced dry skin. Although my cough has improved 95%, I have been coughing more over the past three days. Who knows what's causing that. The good news is that the bone weary fatigue is gone and I'm left with simply being tired by the late afternoon. I'm sure that, too, will pass.
Last night I attended a birthday dinner with the woman I mentioned a few weeks ago who was recently diagnosed with breast cancer. Several of the women were suggesting that things (like cancer) happen for a reason, intimating that there is a lesson to be learned from the experience, which one may or may not ever figure out. On the way home, I gave that some thought, as I have done from time to time. Although I don't necessarily agree that things happen for a reason, I do think that unpleasant life experiences can change you in positive ways if you let them. Because of my cancer diagnosis, I've become a stronger, more assertive person. While I believe I have more patience with others most of the time, I have less patience for people who spend their time wishing their lives were different but either do nothing to change their circumstances or refuse to accept what is. (I guess that's not really a positive change.) I have more empathy for the different ways people deal with adversity. I embrace my age and each passing year as an accomplishment rather than a disappointment, and I try to appreciate all of my life's experiences rather than constantly looking forward to the next one. I appreciate my friends more than ever. I understand that the people who care about me are frustrated by their inability to change the course of my disease and so they try to help in some way -- and I try to let them. That's a tough change for an independent person. Now if I could only get someone to clean my house... LOL
As I always do at this time of year, despite its inherent insanity, I think of all of you and wish you peace, love, health, happiness and prosperity. Please take some time out of your busy schedule to reach out to someone and say how important she/he is in your life. That may be the greatest gift we can give each other -- as well as the least expensive.
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