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
Tuesday, December 30, 2008
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
Tuesday, December 9, 2008
When life hands you lemons... make lemonade!
What great advice! Shoot, I even like lemonade without sugar – but give me a little sugar and I could drink a gallon!
In the last blog, I described a few of the lemons… now a little sugar!
Gordon has to go to England after Christmas to tend to some family business. His mother will be 90 years old on New Years Day, so he is planning the trip to coincide with the big event! When he first asked me to go with him, my natural response was to laugh hysterically (ok.. it was just a loud chuckle…).
When I saw that he was serious, I meekly replied that the thought of going all that way and just sitting like a lump seemed like a waste. His reply was “what’s the difference if you sit like a lump here or in England?”
Well.. I couldn’t find fault in that logic! I thought I should at least check with my doctor to see if it was realistic to travel. My doctor was completely supportive and even encouraged the idea! Of course, half of my baggage will be medical supplies, but then I don’t have to take a fancy wardrobe either!
So… provided everything goes well with my chemo treatments this month, and that my bloodwork comes back ok… then I’ll be celebrating New Years in England! Sweet!
In the last blog, I described a few of the lemons… now a little sugar!
Gordon has to go to England after Christmas to tend to some family business. His mother will be 90 years old on New Years Day, so he is planning the trip to coincide with the big event! When he first asked me to go with him, my natural response was to laugh hysterically (ok.. it was just a loud chuckle…).
When I saw that he was serious, I meekly replied that the thought of going all that way and just sitting like a lump seemed like a waste. His reply was “what’s the difference if you sit like a lump here or in England?”
Well.. I couldn’t find fault in that logic! I thought I should at least check with my doctor to see if it was realistic to travel. My doctor was completely supportive and even encouraged the idea! Of course, half of my baggage will be medical supplies, but then I don’t have to take a fancy wardrobe either!
So… provided everything goes well with my chemo treatments this month, and that my bloodwork comes back ok… then I’ll be celebrating New Years in England! Sweet!
Monday, December 8, 2008
what condition my condition is in...
I went to Gordon’s office party for the holidays this past weekend. It was a lot of fun – good food and great people. One of his associates that I have met before came to our table and asked, “so how have you been??”
“Doing pretty good”, was my reply with a smile.
Gordon leaned over and whispered, “Well done.. he doesn’t know about your condition.”
Well, first of all, I am very thankful that I don’t have to walk around with a blinking name tag that says “I have cancer”! Although I have to admit that “condition” made me think about a secret pregnancy or something! Still I do know that cancer is not the best subject for a holiday dinner party! And I was very thankful that the gentlemen did not know.
Some folks ARE concerned about my actual physical condition.. (imagine that – you are not just reading my blog because of my keen sense of humor). I haven’t really been very specific lately, so for those inquiring minds… here’s some more details (we must warn you that the following contains graphic scenes… just kidding!) Also, I figured this would help defray any condition discussions should I meet any of you at a holiday party!!
Well, it’s not something that ANYONE likes to talk about,…but I am still having problems with a simple bowel movement… no such thing as “simple”! Now that might not seem like such a big deal – but believe me IT IS! (and please no “full of crap” jokes!) I was very fortunate in the location of the tumor because they did not have to remove the lower end where the muscles do their job - that could have meant a permanent colostomy bag and would have been a SERIOUS BUMMER!! Still the newly arranged “sleeker” model colon has not quite adjusted. So if I make frequent trips to the ladies room and spend long sessions there.. don’t send out the Saint Bernards!
Of course, the biggest issue is side effects of the chemo. While there is nothing horrific about what I am experiencing, there is a great deal of anxiety about how the effects will escalate as treatment continues. I have mentioned the issue with sensitivity to touch and cold…I believe that condition is called myopathy.
There are neurological effects that are frightening as well – loss of memory (I think :-) )
I have noticed that there are times when my mouth and my brain are not quite coordinated (okay – stop laughing…) Seriously, I will know what I want to say and it just doesn’t seem to come out as quickly as it should. It may not be very noticeable to others yet, but causes me a bit of concern and frustration.
And there’s the thing about being clumsy… I have started to have a hard time gripping things and have dropped several things including my toothbrush in the toilet! It actually feels like I’m holding it and it just falls out… a very surreal sensation like watching yourself in slow motion in a spiderman movie action scene.
Now at this point everyone who knows me very well must be questioning why I would be upset… I am describing myself as I have pretty much always been – clumsy, forgetful, and full of ****! Perhaps that is one reason why I am sensitive to the problems getting worse. I have been assured that the problems WILL get worse.
The good news is that the conditions should be temporary and go away once treatment is completed and the chemo stops. Now that would be fantastic… I’m just wondering, if it’s like those who have lost their hair and it comes back curly and blonde… If so, then I’m looking forward to remembering birthdays and taking salsa lessons!
Much love,
Sia
“Doing pretty good”, was my reply with a smile.
Gordon leaned over and whispered, “Well done.. he doesn’t know about your condition.”
Well, first of all, I am very thankful that I don’t have to walk around with a blinking name tag that says “I have cancer”! Although I have to admit that “condition” made me think about a secret pregnancy or something! Still I do know that cancer is not the best subject for a holiday dinner party! And I was very thankful that the gentlemen did not know.
Some folks ARE concerned about my actual physical condition.. (imagine that – you are not just reading my blog because of my keen sense of humor). I haven’t really been very specific lately, so for those inquiring minds… here’s some more details (we must warn you that the following contains graphic scenes… just kidding!) Also, I figured this would help defray any condition discussions should I meet any of you at a holiday party!!
Well, it’s not something that ANYONE likes to talk about,…but I am still having problems with a simple bowel movement… no such thing as “simple”! Now that might not seem like such a big deal – but believe me IT IS! (and please no “full of crap” jokes!) I was very fortunate in the location of the tumor because they did not have to remove the lower end where the muscles do their job - that could have meant a permanent colostomy bag and would have been a SERIOUS BUMMER!! Still the newly arranged “sleeker” model colon has not quite adjusted. So if I make frequent trips to the ladies room and spend long sessions there.. don’t send out the Saint Bernards!
Of course, the biggest issue is side effects of the chemo. While there is nothing horrific about what I am experiencing, there is a great deal of anxiety about how the effects will escalate as treatment continues. I have mentioned the issue with sensitivity to touch and cold…I believe that condition is called myopathy.
There are neurological effects that are frightening as well – loss of memory (I think :-) )
I have noticed that there are times when my mouth and my brain are not quite coordinated (okay – stop laughing…) Seriously, I will know what I want to say and it just doesn’t seem to come out as quickly as it should. It may not be very noticeable to others yet, but causes me a bit of concern and frustration.
And there’s the thing about being clumsy… I have started to have a hard time gripping things and have dropped several things including my toothbrush in the toilet! It actually feels like I’m holding it and it just falls out… a very surreal sensation like watching yourself in slow motion in a spiderman movie action scene.
Now at this point everyone who knows me very well must be questioning why I would be upset… I am describing myself as I have pretty much always been – clumsy, forgetful, and full of ****! Perhaps that is one reason why I am sensitive to the problems getting worse. I have been assured that the problems WILL get worse.
The good news is that the conditions should be temporary and go away once treatment is completed and the chemo stops. Now that would be fantastic… I’m just wondering, if it’s like those who have lost their hair and it comes back curly and blonde… If so, then I’m looking forward to remembering birthdays and taking salsa lessons!
Much love,
Sia
Saturday, December 6, 2008
A Day in the LIfe...
OK... frustration won a battle... but ...
I am a strong, independent (ok - really hard-headed) woman. I don't like to be the victim, or to feel needy. I've prided myself in handling my own business and have joked more than once that "the greatest gift God ever gave me was a rubber butt... because when I hit the bottom, I bounce"!
Loss of control and independence has been the hardest issue for me to deal with. I certainly do appreciate having so many loved ones to help me through this, especially as I admit that I really DO need help. I have tried not to take anyone for granted, or to misuse any one's kindness, and since there have been so many wonderfully thoughtful friends and family members, I have given much thought to "distributing the work load" - and accepting help when I really needed it, while still trying to manage as much as I am able. I only want to ask for help if it's something that I can't do myself! (like a stubborn 3-year old!)
The Infusion unit added an extention to my CVC so that I can flush my own line daily and I've finally figured out how to take my own shower and wash my hair without getting my bandages wet. This week I was determined that I would disconnect the pump and flush the lines myself..
The pump runs for approximately 46 hours and then when it is empty, an alarm goes off and you have 15-30 minutes to disconnect and flush the line or you run the risk of a blood clot. Last time we had to make a mad dash to MD Anderson because we couldn't get the cap reconnected. So Gordon and I both took a class and I really felt ready for the challenge - No need for Gordon to miss work just to disconnect the pump!
I was completely relaxed and confident... I had all my supplies ready to go and was prepared to take a shower as soon as I was free of the pump. It had been three days since I washed my hair, so I was "feeling the need"!
Suddenly the alarm goes off - Seemed to be a couple of hours early.. but I looked and sure enough, the pump was empty. I followed the instruction card explicitly.. until it came time to "disconnect the tubing". I knew exactly where it was supposed to turn.. and tried EVERYTHING! I turned until my fingers were red, but could NOT get it disconnected! AHHHHHH... So still in my pj's... dirty hair, no make up.. jump in the car for the 45 min. trip to MD Anderson AGAIN!!
That was a very long trip ... and to say that I was frustrated is probably the overstatement of the year. I was literally in tears driving to the hospital ... going over and over again what I could possibly be doing wrong. My sense of independence was truly shattered!
As I watched the nurse twist the connection loose, I couldn't help but blurt out in my frustration... "Why couldn't I do it myself??"
"Oxyplatin." was her reply. "It's a common problem with that type of chemo. Your fingers are just too sensitive."
So... as my own limitations stare me in the face, I'll have to let oxyplatin win that one. It is, after all, just one battle and I'm in it to win the war.
I am a strong, independent (ok - really hard-headed) woman. I don't like to be the victim, or to feel needy. I've prided myself in handling my own business and have joked more than once that "the greatest gift God ever gave me was a rubber butt... because when I hit the bottom, I bounce"!
Loss of control and independence has been the hardest issue for me to deal with. I certainly do appreciate having so many loved ones to help me through this, especially as I admit that I really DO need help. I have tried not to take anyone for granted, or to misuse any one's kindness, and since there have been so many wonderfully thoughtful friends and family members, I have given much thought to "distributing the work load" - and accepting help when I really needed it, while still trying to manage as much as I am able. I only want to ask for help if it's something that I can't do myself! (like a stubborn 3-year old!)
The Infusion unit added an extention to my CVC so that I can flush my own line daily and I've finally figured out how to take my own shower and wash my hair without getting my bandages wet. This week I was determined that I would disconnect the pump and flush the lines myself..
The pump runs for approximately 46 hours and then when it is empty, an alarm goes off and you have 15-30 minutes to disconnect and flush the line or you run the risk of a blood clot. Last time we had to make a mad dash to MD Anderson because we couldn't get the cap reconnected. So Gordon and I both took a class and I really felt ready for the challenge - No need for Gordon to miss work just to disconnect the pump!
I was completely relaxed and confident... I had all my supplies ready to go and was prepared to take a shower as soon as I was free of the pump. It had been three days since I washed my hair, so I was "feeling the need"!
Suddenly the alarm goes off - Seemed to be a couple of hours early.. but I looked and sure enough, the pump was empty. I followed the instruction card explicitly.. until it came time to "disconnect the tubing". I knew exactly where it was supposed to turn.. and tried EVERYTHING! I turned until my fingers were red, but could NOT get it disconnected! AHHHHHH... So still in my pj's... dirty hair, no make up.. jump in the car for the 45 min. trip to MD Anderson AGAIN!!
That was a very long trip ... and to say that I was frustrated is probably the overstatement of the year. I was literally in tears driving to the hospital ... going over and over again what I could possibly be doing wrong. My sense of independence was truly shattered!
As I watched the nurse twist the connection loose, I couldn't help but blurt out in my frustration... "Why couldn't I do it myself??"
"Oxyplatin." was her reply. "It's a common problem with that type of chemo. Your fingers are just too sensitive."
So... as my own limitations stare me in the face, I'll have to let oxyplatin win that one. It is, after all, just one battle and I'm in it to win the war.
Wednesday, December 3, 2008
More chemo ...
Well, this is a strange world... I was actually pushing the doctor to get my chemo scheduled! Finally had my treatment yesterday and all went well. So now I feel yucky... but guess I should be glad about it??!!
I didn't have the immediate sensitivity that I had the first time since the doc decided to lower the dosage a bit - still even cool water burns my throat and my fingers tips feel ting'ly and strange and my stomach is churning. Enough said.. it's not fun... but it's definitely not the worse...
I'll be on the pump until Thursday.
Much love,
Sia
I didn't have the immediate sensitivity that I had the first time since the doc decided to lower the dosage a bit - still even cool water burns my throat and my fingers tips feel ting'ly and strange and my stomach is churning. Enough said.. it's not fun... but it's definitely not the worse...
I'll be on the pump until Thursday.
Much love,
Sia
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