SHORT REPORT: I feel very strong and ready for the next treatment on Wednesday. I have to be there at 7am for blood work, but should be back home by early afternoon.
MORE DETAIL: This whole journey is really very personal, so I do struggle with what to share and what to keep private. The last month has been a very private time, with much of my battle being mental and spiritual. The lack of energy and inability to think properly make that battle a serious challenge.
MD Anderson offers support on every front… and I am trying to take full advantage of that. Last week was the first time that “the planets were aligned” for me to participate in some classes at MDA – Tibetan Sound Meditation; Qigong and Tai Chi were all incredibly enlightening (no pun intended). The Eastern remedies all recognize the flow of energy and it’s importance to healing and health. I can honestly say that the difference was tangible.
Great news - my insurance will cover acupuncture, which has also been a huge help, not just in the energy flow, but also for the problems with neuropathy. There is a wonderful MD at MDA who has been practicing acupuncture for over 40 years. She’s incredible! I'll have another treatment tomorrow in prep for my chemo Wed.
To add to my quest for more energy… my healing friend Mary came to the rescue as well. She provided me with “flower essences” (no… not the kind you smoke)! There were a total of five different flowers which she chose for me and each one has a unique message that I repeat as a meditation – this has proved to be a real strength. I was amazed at how the words addressed very specific needs! Thanks again, Mary!
So I must go now and practice my meditation and Tai Chi… and conga!
I am blessed.
Sia
Monday, February 2, 2009
Sunday, January 25, 2009
January 25
SHORT REPORT: My platelets and white count were still low last Wed (1/21), but had improved so the doc approved me to have the chemo treatment with a slightly lower dose. The concern is that we don’t want too many more delays in the treatments. It is better to have a lower dose on a consistent schedule, rather than have to keep skipping weeks due to low blood levels.
Nausea and fatigue are the two worse side effects right now. So I feel very fortunate. Although it really sucked that I missed Ros and Paul’s Burns Dinner :-(
I'm sorry that I haven't written more... the days just seem to run into each other... good and bad mixed in together. Fortunately there are some of both... not just bad ones, although my energy level does get in the way even on the good ones. We've had some of the most beautiful weather lately mixed in with some really cold days... seems to reflect my own life! So I just sit in the sunshine whenever possible!
Since the last dose was a little lighter, I'm hoping that next week will be a good one!
much love,
Sia
Nausea and fatigue are the two worse side effects right now. So I feel very fortunate. Although it really sucked that I missed Ros and Paul’s Burns Dinner :-(
I'm sorry that I haven't written more... the days just seem to run into each other... good and bad mixed in together. Fortunately there are some of both... not just bad ones, although my energy level does get in the way even on the good ones. We've had some of the most beautiful weather lately mixed in with some really cold days... seems to reflect my own life! So I just sit in the sunshine whenever possible!
Since the last dose was a little lighter, I'm hoping that next week will be a good one!
much love,
Sia
Thursday, January 15, 2009
January 15 - Frustration is my muse...
SHORT REPORT: No chemo yesterday – low platelets Looks like I’ll have to go through the process again next week!!
This has been an incredibly frustrating couple of days, just trying to find some kind of normalcy in my chaotic life. I've been dealing with all the paperwork and financial concerns, which is a full time job in itself, and there does not seem to be much hope of a positive change in the near future. Although I am really fortunate to have grown children who are very capable and willing to help with anything and everything, I am still a very private and fiercely independent person and the whole "helpless" mentality is totally foreign to me. Yet, more and more I find myself with fewer options.
The low point of the week was finding out that I couldn't have chemo yesterday because my platelets were too low, although I was honestly feeling pretty badly by the time I found out and was just glad to be able to go home.
"Some days are like that... even in Australia"
Sia
This has been an incredibly frustrating couple of days, just trying to find some kind of normalcy in my chaotic life. I've been dealing with all the paperwork and financial concerns, which is a full time job in itself, and there does not seem to be much hope of a positive change in the near future. Although I am really fortunate to have grown children who are very capable and willing to help with anything and everything, I am still a very private and fiercely independent person and the whole "helpless" mentality is totally foreign to me. Yet, more and more I find myself with fewer options.
The low point of the week was finding out that I couldn't have chemo yesterday because my platelets were too low, although I was honestly feeling pretty badly by the time I found out and was just glad to be able to go home.
"Some days are like that... even in Australia"
Sia
Sunday, January 11, 2009
January 11 - And the process goes on...
SHORT REPORT FIRST: fairly harsh side effects from the last chemo, but feeling really good the last couple of days – aside from the embarrassing “almost fainting thing at the airport (more later in the blog). My hair has started to break off a lot now, so it’s time for a change (more later). Next chemo is Wed., January 14th the research group will test my “short term memory and motor skills” again to monitor the effects of the chemo that I’m taking. The “up and down” is hard on my emotions, but then remember I DO have that rubber butt thing! So what goes down… must come up!
MORE DETAIL:
New Years Eve was my last date with chemo. Monica stayed with me (I know why Garrett is such a trooper!) and together, we brought in a very subdued and peaceful New Year at Gordon’s house. Then I spent the next few days at Nick & Sue’s house where they took really good care of me. The weather was beautiful and I spent as much time as I could in their backyard, playing with my dog!! It was magic!
When the time came… Nick removed the pump like a pro!! No mad dash to MDA – yippee!!! We really should call him Dr. Nick!
His wife, Sue is a jewel! She has been such a tremendous help with my bills and especially the whole “keeping up with medical invoices and insurance statements” thing!! It would be a total nightmare without her. Of course, she’s also just fun! Her new short haircut inspired me… she looks adorable! We went to a movie and got some delicious sesame rolls at the Asian market. We also had an opportunity to just sit and talk, which was very special since she works so much! I feel really thankful to have her as a daughter-in-law!!
After I was free from the pump, I enjoyed a couple of days of solitude at Gordon’s house (yes, I DO like to be alone sometimes!). I was still feeling pretty yucky, and it had gotten really cold outside, so I just hunkered down with my blanket and my friend, TV! Actually, it gave me an opportunity to sort through more of my “stuff” and consolidate it a little more – so I was able to be a little productive!
Then the news predicted the prettiest day of the month – sunshine and 70’s! So with the help of my son David… I made it to Galveston to enjoy some sun on the beach! It was the very best medicine. As I sat on the pier, the sun started to go down and it sent out a long ray of sunshine straight out across the water, directly at me! It was like the sun was pointing at me! I love the ocean!!
As I mentioned earlier, my hair has started to really show the effects of chemo. Although it hasn’t fallen out completely, and the doctor said that it may not, it definitely has been thinning a lot, and has become very brittle – breaking off to only about ¼ - ½ inch in some places. Of course, those “some places” are never convenient – like right in the very front! So it was time for some action. My daughter sent me a plane ticket for an emergency trip to Dallas!! I was starting to feel a little better, so the timing seemed perfect.
Admittedly, my next adventure proved that I am still in denial about “my condition”… and I got a serious reality-check! I loaded up my suitcase with wheels and put everything possible into it, so I wouldn’t have to carry it on the plane (that was my strategy). Then I headed to the airport, parked in the economy lot at Hobby - which is fairly close to the terminal, walking distance for "most folks". I jumped out of my car and grabbed my stuff and… suddenly realized that I could NOT carry it! In fact, it was nearly impossible for me to pull the suitcase! I looked around and was totally alone in the parking lot (MAJOR BAD PLANNING ON MY PART). I dropped off a few things to lighten the load slightly (like my winter coat – duh!) and just headed for the terminal – stopping to rest as often as I had to. By now I knew that I was going to miss that plane. I made it inside and collapsed at the baggage claim. OK – not on the floor or anything, just into the nearest chair – but I knew that I could not go any farther.
I made a desperate “911 call” to Monica – to let her know I was going to miss that flight. She stayed with me on the phone while our incredible friend, Lola called every person in the airport… I was ordered to “stay put” and they sent a WHEELCHAIR!! I asked them “couldn’t they just bring a golf cart – so I could feel important instead of helpless???”
Honestly I was very grateful to see that wonderful lady with the wheelchair.. and thankfully made the next flight to Dallas. When E picked me up… she wouldn’t even let me carry my purse!
After a day of rest, we went “wig shopping” and had a blast! Dallas has a very special shop, especially for cancer patients and they were fantastic! You may not recognize the new me!! We’ll try to post a few pics later!
Hopefully today, we go for the “cut”… something short and sassy (like Sue’s!), to allow my hair to recover in its own time. I’ll spend a couple of days having fun in big D and then head back to Houston in time for the next chemo on Wednesday. And the process goes on…
As always.. I have so many of you to thank for your concern and support – I AM BLESSED!
Special thanks to Sue, for saving me lots of money and frustration, to Laurie for walking me through my last “melt-down”, to David for the walk on the beach, to Grandma Lola for sending out the rescue squad, to Monica, E & Garrett for all the joy you bring me (oh, and for the wig!), and to Nicholas, for being “the man” in the family since he was 3!
Love to all,
Sia
MORE DETAIL:
New Years Eve was my last date with chemo. Monica stayed with me (I know why Garrett is such a trooper!) and together, we brought in a very subdued and peaceful New Year at Gordon’s house. Then I spent the next few days at Nick & Sue’s house where they took really good care of me. The weather was beautiful and I spent as much time as I could in their backyard, playing with my dog!! It was magic!
When the time came… Nick removed the pump like a pro!! No mad dash to MDA – yippee!!! We really should call him Dr. Nick!
His wife, Sue is a jewel! She has been such a tremendous help with my bills and especially the whole “keeping up with medical invoices and insurance statements” thing!! It would be a total nightmare without her. Of course, she’s also just fun! Her new short haircut inspired me… she looks adorable! We went to a movie and got some delicious sesame rolls at the Asian market. We also had an opportunity to just sit and talk, which was very special since she works so much! I feel really thankful to have her as a daughter-in-law!!
After I was free from the pump, I enjoyed a couple of days of solitude at Gordon’s house (yes, I DO like to be alone sometimes!). I was still feeling pretty yucky, and it had gotten really cold outside, so I just hunkered down with my blanket and my friend, TV! Actually, it gave me an opportunity to sort through more of my “stuff” and consolidate it a little more – so I was able to be a little productive!
Then the news predicted the prettiest day of the month – sunshine and 70’s! So with the help of my son David… I made it to Galveston to enjoy some sun on the beach! It was the very best medicine. As I sat on the pier, the sun started to go down and it sent out a long ray of sunshine straight out across the water, directly at me! It was like the sun was pointing at me! I love the ocean!!
As I mentioned earlier, my hair has started to really show the effects of chemo. Although it hasn’t fallen out completely, and the doctor said that it may not, it definitely has been thinning a lot, and has become very brittle – breaking off to only about ¼ - ½ inch in some places. Of course, those “some places” are never convenient – like right in the very front! So it was time for some action. My daughter sent me a plane ticket for an emergency trip to Dallas!! I was starting to feel a little better, so the timing seemed perfect.
Admittedly, my next adventure proved that I am still in denial about “my condition”… and I got a serious reality-check! I loaded up my suitcase with wheels and put everything possible into it, so I wouldn’t have to carry it on the plane (that was my strategy). Then I headed to the airport, parked in the economy lot at Hobby - which is fairly close to the terminal, walking distance for "most folks". I jumped out of my car and grabbed my stuff and… suddenly realized that I could NOT carry it! In fact, it was nearly impossible for me to pull the suitcase! I looked around and was totally alone in the parking lot (MAJOR BAD PLANNING ON MY PART). I dropped off a few things to lighten the load slightly (like my winter coat – duh!) and just headed for the terminal – stopping to rest as often as I had to. By now I knew that I was going to miss that plane. I made it inside and collapsed at the baggage claim. OK – not on the floor or anything, just into the nearest chair – but I knew that I could not go any farther.
I made a desperate “911 call” to Monica – to let her know I was going to miss that flight. She stayed with me on the phone while our incredible friend, Lola called every person in the airport… I was ordered to “stay put” and they sent a WHEELCHAIR!! I asked them “couldn’t they just bring a golf cart – so I could feel important instead of helpless???”
Honestly I was very grateful to see that wonderful lady with the wheelchair.. and thankfully made the next flight to Dallas. When E picked me up… she wouldn’t even let me carry my purse!
After a day of rest, we went “wig shopping” and had a blast! Dallas has a very special shop, especially for cancer patients and they were fantastic! You may not recognize the new me!! We’ll try to post a few pics later!
Hopefully today, we go for the “cut”… something short and sassy (like Sue’s!), to allow my hair to recover in its own time. I’ll spend a couple of days having fun in big D and then head back to Houston in time for the next chemo on Wednesday. And the process goes on…
As always.. I have so many of you to thank for your concern and support – I AM BLESSED!
Special thanks to Sue, for saving me lots of money and frustration, to Laurie for walking me through my last “melt-down”, to David for the walk on the beach, to Grandma Lola for sending out the rescue squad, to Monica, E & Garrett for all the joy you bring me (oh, and for the wig!), and to Nicholas, for being “the man” in the family since he was 3!
Love to all,
Sia
Tuesday, December 30, 2008
Dec 30
I have been really negligent on the blog – my apologies! I just thought that the endless “good day – bad day” might be as redundant for you as it is for me! After that last chemo there were quite a few bad days and the truth is I just didn’t have the energy to write anything. The sensitivity was very intense and reached a peak in a Kroger parking lot on that really cold day we had last week. I was bundled up properly and had on my hat and gloves, but suddenly it felt like my hands had gone to sleep all the way down to my wrists. You know, that horrible sensation when it first starts to “wake up”… you can’t move it, but you have that tingling pain that just stops you. Well, it hit suddenly, and there I was in the Kroger parking lot with a shopping cart full of groceries – it took me several minutes to be able to even open the door to the car. It was really scary!
It lasted the whole drive home and didn’t go away for over an hour, even after I was home and warm again.
Then the good days came again – just in time for Christmas! We had a wonderful holiday. At the last minute, Garrett spent Christmas eve with me. Of course, he thought he was too big for Santa, but NOT AT NANA’S HOUSE!! I gave him an old sock, which I had inadvertently died a funky purple color, and he placed it on the fireplace. Sure enough, just like magic, the next morning we were all surprised at how many things Santa could magically fit into that sock!! Kids really do make Christmas fun!
He really is a cool kid. We were planning a day at the beach, when I had this pain in my right shoulder and had to go into MDA. Since it was the arm where the CVC is, they had to be sure that there wasn’t a clot or infection. He spent the whole day with me at the hospital – we watched the Texans win and Dallas lose!!! At the end of day, we concluded that I must have nothing more serious than “Wii arm” - I did come in second place on one of the bowling games Christmas day!!
Today I go for acupuncture (a new experience) and tomorrow is chemo.
Hope you all have a really Happy New Year!!
Much love,
Sia
I have been really negligent on the blog – my apologies! I just thought that the endless “good day – bad day” might be as redundant for you as it is for me! After that last chemo there were quite a few bad days and the truth is I just didn’t have the energy to write anything. The sensitivity was very intense and reached a peak in a Kroger parking lot on that really cold day we had last week. I was bundled up properly and had on my hat and gloves, but suddenly it felt like my hands had gone to sleep all the way down to my wrists. You know, that horrible sensation when it first starts to “wake up”… you can’t move it, but you have that tingling pain that just stops you. Well, it hit suddenly, and there I was in the Kroger parking lot with a shopping cart full of groceries – it took me several minutes to be able to even open the door to the car. It was really scary!
It lasted the whole drive home and didn’t go away for over an hour, even after I was home and warm again.
Then the good days came again – just in time for Christmas! We had a wonderful holiday. At the last minute, Garrett spent Christmas eve with me. Of course, he thought he was too big for Santa, but NOT AT NANA’S HOUSE!! I gave him an old sock, which I had inadvertently died a funky purple color, and he placed it on the fireplace. Sure enough, just like magic, the next morning we were all surprised at how many things Santa could magically fit into that sock!! Kids really do make Christmas fun!
He really is a cool kid. We were planning a day at the beach, when I had this pain in my right shoulder and had to go into MDA. Since it was the arm where the CVC is, they had to be sure that there wasn’t a clot or infection. He spent the whole day with me at the hospital – we watched the Texans win and Dallas lose!!! At the end of day, we concluded that I must have nothing more serious than “Wii arm” - I did come in second place on one of the bowling games Christmas day!!
Today I go for acupuncture (a new experience) and tomorrow is chemo.
Hope you all have a really Happy New Year!!
Much love,
Sia
Thursday, December 18, 2008
December 16-18
Tuesday was a really good day! I had to turn in my keys at the apartment (chapter closed) and while I was downtown I stopped by to visit my office, something that I’ve wanted to do for quite some time. I knew it might be my last opportunity for a while since chemo is scheduled for Wednesday and is getting more intense. So I had to take advantage of my GOOD DAY!
It was so exciting to see everyone around my old desk – it really is the greatest group of folks that I’ve ever worked with! I was there until after lunch (with one brief trip to my car to sit and rest)… Probably a little longer than I should have stayed, but still didn’t get to see everyone that I would have liked to see! It was a real inspiration to see everyone that I DID see!
I came home and pretty much went straight to bed (what a light-weight).. but my appointment on Wednesday started at 7am so I really needed to be rested – and it’s a good thing that I did.
Timing for chemo was good because I finished just in time to grab some soup and sit in on the Music Therapy Class – which was very interesting. Michael is the therapist who designed the program which is used at MDA. He basically took a therapy used by psychiatrists to help mental patients with severe depression and altered it to help patients who need to deal with pain and stress.
To ease depression, the music is orchestrated to move your mood along with the rhythm of the music (basically going from slow and pensive to upbeat) In order to bring relaxation, this is reversed – going from fast to slow with optimal being about 60 beats per minute (basic resting heartbeat). This process has been a tremendous help to children with cancer, who for many years were treated without the benefit of sedatives.
During the class, Michael gave us guidelines for creating our own personal “relaxation tape”. I’ve been thinking all night about it and can’t wait to try and record some relaxing play lists with some of my favorite tunes! Since my mood changes, I’ll have to do different playlists for classical, Gaelic, fiddle, country, folk, rock/pop, Latin and Hawaiian!
As exciting as the class was, I was ready to leave when it ended. This chemo treatment had more dramatic reactions again – more like the first one. My fingers hurt and I had leg cramps and a headache even before I left the hospital. Too bad I don’t have that recording yet!
The pump will come off on Friday and I scheduled an appointment at MDA just in case I’m not able to disconnect myself. Hopefully that will prevent the mad dash I had last time.
So I’m not really sure about tomorrow, but today is a day of rest…
Much love,
Sia
PS - for those inquiring minds... the condition I mentioned about sensitivity to touch is neuropathy..
It was so exciting to see everyone around my old desk – it really is the greatest group of folks that I’ve ever worked with! I was there until after lunch (with one brief trip to my car to sit and rest)… Probably a little longer than I should have stayed, but still didn’t get to see everyone that I would have liked to see! It was a real inspiration to see everyone that I DID see!
I came home and pretty much went straight to bed (what a light-weight).. but my appointment on Wednesday started at 7am so I really needed to be rested – and it’s a good thing that I did.
Timing for chemo was good because I finished just in time to grab some soup and sit in on the Music Therapy Class – which was very interesting. Michael is the therapist who designed the program which is used at MDA. He basically took a therapy used by psychiatrists to help mental patients with severe depression and altered it to help patients who need to deal with pain and stress.
To ease depression, the music is orchestrated to move your mood along with the rhythm of the music (basically going from slow and pensive to upbeat) In order to bring relaxation, this is reversed – going from fast to slow with optimal being about 60 beats per minute (basic resting heartbeat). This process has been a tremendous help to children with cancer, who for many years were treated without the benefit of sedatives.
During the class, Michael gave us guidelines for creating our own personal “relaxation tape”. I’ve been thinking all night about it and can’t wait to try and record some relaxing play lists with some of my favorite tunes! Since my mood changes, I’ll have to do different playlists for classical, Gaelic, fiddle, country, folk, rock/pop, Latin and Hawaiian!
As exciting as the class was, I was ready to leave when it ended. This chemo treatment had more dramatic reactions again – more like the first one. My fingers hurt and I had leg cramps and a headache even before I left the hospital. Too bad I don’t have that recording yet!
The pump will come off on Friday and I scheduled an appointment at MDA just in case I’m not able to disconnect myself. Hopefully that will prevent the mad dash I had last time.
So I’m not really sure about tomorrow, but today is a day of rest…
Much love,
Sia
PS - for those inquiring minds... the condition I mentioned about sensitivity to touch is neuropathy..
Sunday, December 14, 2008
MOVE DAY
Today is the big day...
The movers will be at the apartment at 8:00 this morning and from there it will be like stepping on a moving sidewalk that’s going about 60 mph! I've spent the last week sorting and packing.. with several trips to the thrift shops and the dumpster! Although the process was a little slower when I packed, it was good for me to have a little solitude with all my treasures as I tucked them in for the long winter!
Then yesterday, Chris and I worked all day finishing things up… all the boxes are downstairs, the furniture disassembled. There will still be a lot of “cleaning up” to do… but today is the day! I've got to get over there early enough to sit one last time on my beautiful sofa before it gets shrink wrapped!
I wanted to give a quick update before all the activity starts, as this is probably my last opportunity for a few days. I'll have two days to clean the apartment, then chemo on Wednesday. My doctor's appointment last Friday was a little bitter-sweet. The good news is that my white count is stable so the treatments can proceed. I was a little concerned because I’ve had an awful cold for the last week. My blood pressure is a little high (can you spell STRESS)… but it’s not really that bad and no cause for any concern.
The really sad news for me is that my trip to England will be cut short at best. My next chemo treatment starts this Wednesday and then I’ll have another treatment ON NEW YEARS EVE – OK that is harsh! But it will be a New Years to remember!
Gordon is trying to change my flights so that I can still meet him in England - at least for a few days. So the trip is not completely canceled yet, but it is seriously shortened and in jepardy. Of course, we’ve known all along that it is a basic crap shoot. Obviously, my treatments have to come first and it all depends on how my body responds to chemo and how the schedule at MDA works… so we are trying to hit a moving target.
Continental is wonderful.. as long as my doctor gives me a note, and there is availability on the flight, they will try to work with us. So I haven’t given up hope – I’m still packing!!
Speaking of packing… I better get going!
Much love,
Sia
The movers will be at the apartment at 8:00 this morning and from there it will be like stepping on a moving sidewalk that’s going about 60 mph! I've spent the last week sorting and packing.. with several trips to the thrift shops and the dumpster! Although the process was a little slower when I packed, it was good for me to have a little solitude with all my treasures as I tucked them in for the long winter!
Then yesterday, Chris and I worked all day finishing things up… all the boxes are downstairs, the furniture disassembled. There will still be a lot of “cleaning up” to do… but today is the day! I've got to get over there early enough to sit one last time on my beautiful sofa before it gets shrink wrapped!
I wanted to give a quick update before all the activity starts, as this is probably my last opportunity for a few days. I'll have two days to clean the apartment, then chemo on Wednesday. My doctor's appointment last Friday was a little bitter-sweet. The good news is that my white count is stable so the treatments can proceed. I was a little concerned because I’ve had an awful cold for the last week. My blood pressure is a little high (can you spell STRESS)… but it’s not really that bad and no cause for any concern.
The really sad news for me is that my trip to England will be cut short at best. My next chemo treatment starts this Wednesday and then I’ll have another treatment ON NEW YEARS EVE – OK that is harsh! But it will be a New Years to remember!
Gordon is trying to change my flights so that I can still meet him in England - at least for a few days. So the trip is not completely canceled yet, but it is seriously shortened and in jepardy. Of course, we’ve known all along that it is a basic crap shoot. Obviously, my treatments have to come first and it all depends on how my body responds to chemo and how the schedule at MDA works… so we are trying to hit a moving target.
Continental is wonderful.. as long as my doctor gives me a note, and there is availability on the flight, they will try to work with us. So I haven’t given up hope – I’m still packing!!
Speaking of packing… I better get going!
Much love,
Sia
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