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
Sunday, November 30, 2008
Giving Thanks!
What a fantastic Thanksgiving! At first, I was very disappointed because I couldn't make it out to my brother's house this year. So we celebrated here in Houston at my son's house. Sue, my daughter-in-law, did a fantastic job with the food and made it all look like a page from Martha Stewart! I tasted everything on the table... spent several hours digesting and talking.. and then made my escape just as the younger generation was diving into Nick's famous eggnog! That was a task better left to them!!
Monica, Garrett and E came in from Dallas for Thanksgiving and stayed to help with the packing! Anyone who has ever been in my apartment would appreciate the daunting task of packing it all for storage - it was overwhelming for me to even think about it, but Nick, Sue, Monica, E, Garrett and Gordon... did it!! They were an awesome team.. and even let me keep my rocks! (ok... that IS a story for another day!) There are still a few loose ends, but most of it is packed and ready for a storage unit by mid-December!
The good and bad news is... I was able to help, because ONCE AGAIN MY CHEMO WAS POSTPONED!! It worked out for the better this weekend, but is becoming a real frustration - getting totally psyched for it and then it doesn't happen! This time, I went in for the bloodwork on Friday expecting my next treatment. Then after waiting four hours, was told that my doctor had noted that my dosage needed to be adjusted, but hadn't updated the order! They tried, but weren't able to reach him, so I would have to wait until he returns from the holidays! At this point, I just want to get on with it...
Still, I had a wonderful Thanksgiving with loved ones ... and am ready for the move... so I am a lucky duck!!
BTW - HAPPY ST. ANDREW'S DAY /TEXAS DAY OF THE SCOTS!!
Slainte'
Sia
Monica, Garrett and E came in from Dallas for Thanksgiving and stayed to help with the packing! Anyone who has ever been in my apartment would appreciate the daunting task of packing it all for storage - it was overwhelming for me to even think about it, but Nick, Sue, Monica, E, Garrett and Gordon... did it!! They were an awesome team.. and even let me keep my rocks! (ok... that IS a story for another day!) There are still a few loose ends, but most of it is packed and ready for a storage unit by mid-December!
The good and bad news is... I was able to help, because ONCE AGAIN MY CHEMO WAS POSTPONED!! It worked out for the better this weekend, but is becoming a real frustration - getting totally psyched for it and then it doesn't happen! This time, I went in for the bloodwork on Friday expecting my next treatment. Then after waiting four hours, was told that my doctor had noted that my dosage needed to be adjusted, but hadn't updated the order! They tried, but weren't able to reach him, so I would have to wait until he returns from the holidays! At this point, I just want to get on with it...
Still, I had a wonderful Thanksgiving with loved ones ... and am ready for the move... so I am a lucky duck!!
BTW - HAPPY ST. ANDREW'S DAY /TEXAS DAY OF THE SCOTS!!
Slainte'
Sia
Saturday, November 22, 2008
More good days...
I had to arrive at MDA for 7:30 am yesterday to have blood work done. My son, Nick, is such a trooper.. he stayed with me the night before so we could go together and then followed me through all the various appointments throughout the day, making sure that I didn't get lost and wander the hospital halls for all of eternity!
It is standard procedure to have blood tested the day of chemo to monitor the effects of chemo and to be sure that everything is functioning as it should be (red & white blood count, liver and kidneys ...). Then you have to wait 2 hours and consult with the doctor for the results.
Between the lab and the doctor appointment, I went to the research department for more testing. I have agreed to contribute to a study to monitor side effects of the specific type of chemo which I am taking. One of the most scary side effects for me is the loss of feeling and/or extreme sensitivity to cold in hands and feet, as this can directly effect my ability to play guitar. The tests include basic motor skills (timed peg board) and sensitivity tests to pressure, sharp, and cold. Without looking, I have to tell them what I am sensing. It is interesting to see how they conduct the testing and has made me much more aware. Also the ladies doing the research are really nice people... so it's a joy to work with them.
After the research testing, I met with Dr. Garrett. I get the feeling that I provide his dry sense of humor with a fresh source of material! He did ask genuinely about my experience at the Integrative Medicine clinic and I was able to tell him that I found it extremely helpful. It seems to have gotten his interest and may be a resource that he was honestly unaware of previously.
We reviewed the side effects that I experienced with my first round of chemo.. and then the blood work. "No chemo today!" He said that my white blood count was too low and that I would have to wait a week for the next treatment. I was very surprised, as I have been feeling really good the last few days, and I asked him why my count was so low .... "Probably all that yoga stuff..." was his dry reply!!
Then he explained that we just might have to reduce the dosage of the chemo. Every person's body responds differently to treatment and we just had to adjust and find the right dosage. He assured me that this would not affect the timeline.
So the good news of the day.. I should be able to have a wonderful Thanksgiving Day... my next chemo will be the day AFTER!!
Today I will spend the day sorting and packing and trying to bring a little order to my chaotic life!! Gordon went to stay on the boat for the weekend... he is a smart man!
Sia
It is standard procedure to have blood tested the day of chemo to monitor the effects of chemo and to be sure that everything is functioning as it should be (red & white blood count, liver and kidneys ...). Then you have to wait 2 hours and consult with the doctor for the results.
Between the lab and the doctor appointment, I went to the research department for more testing. I have agreed to contribute to a study to monitor side effects of the specific type of chemo which I am taking. One of the most scary side effects for me is the loss of feeling and/or extreme sensitivity to cold in hands and feet, as this can directly effect my ability to play guitar. The tests include basic motor skills (timed peg board) and sensitivity tests to pressure, sharp, and cold. Without looking, I have to tell them what I am sensing. It is interesting to see how they conduct the testing and has made me much more aware. Also the ladies doing the research are really nice people... so it's a joy to work with them.
After the research testing, I met with Dr. Garrett. I get the feeling that I provide his dry sense of humor with a fresh source of material! He did ask genuinely about my experience at the Integrative Medicine clinic and I was able to tell him that I found it extremely helpful. It seems to have gotten his interest and may be a resource that he was honestly unaware of previously.
We reviewed the side effects that I experienced with my first round of chemo.. and then the blood work. "No chemo today!" He said that my white blood count was too low and that I would have to wait a week for the next treatment. I was very surprised, as I have been feeling really good the last few days, and I asked him why my count was so low .... "Probably all that yoga stuff..." was his dry reply!!
Then he explained that we just might have to reduce the dosage of the chemo. Every person's body responds differently to treatment and we just had to adjust and find the right dosage. He assured me that this would not affect the timeline.
So the good news of the day.. I should be able to have a wonderful Thanksgiving Day... my next chemo will be the day AFTER!!
Today I will spend the day sorting and packing and trying to bring a little order to my chaotic life!! Gordon went to stay on the boat for the weekend... he is a smart man!
Sia
Thursday, November 20, 2008
The Eye of the Storm...
I feel great! I have felt really good for the last 3 days other than completely tiring myself out packing! Yes, I have decided to give up my apartment for the duration of my treatments for any number of reasons, mostly because it will keep me ahead of my finances and give me one less thing to worry about. It also just makes sense from a personal standpoint, since it is probably best for me not to be alone so much. Since my lease expires the first of December, there was a bit of urgency to the decision which is why I have been taking advantage of my good days to begin the packing process.
It's hard to believe that it has been over two weeks since my last chemo treatment. The side effects have completely disappeared in the last couple of days and I am also finally feeling better from the surgery... I was able to make a trip over to Reliant to see some of my work buddies!! They gathered boxes for me and came down to the drive through. It was so good to see them - the greatest group I have ever worked with!!
I also had my appointment with the doctors at MDA Integrative Medicine Clinic which was especially encouraging to me. They went over basic diet, exercise, suppliments, and complimentary care for cancer patients and really listened to my personal concerns. One thing that I've found about MDA is that it is a complete package.. but you have to look for all the pieces. My oncologist is a phenominal cancer doctor, but he is so focused on his specialty that his view can be a little one-sided.
For example - I am very concerned about my kidneys. Since I was a small child I have had problems due to oversensitity. When I voiced my concern to Dr. Garrett, his response was, "Well, would you rather die of cancer or lose a kidney - you CAN live without a kidney!" Of course, I don't want to do either. I advised my doctor that he had to "QUIT WATCHING HOUSE!!" :-)
The integrative team is more responsive to those types of personal concerns, and can give me advice to help control side effects and minimize damage to my kidneys. Tomorrow before my chemo, I will meet with a nutritionist to go over specific needs for my type of cancer and chemo and help me to determine the best personal plan!
Tomorrow is another chemo day... so I am off to enjoy this beautiful day! Thank you so much for all your prayers and good wishes - for the cuddly teddy bears, incredibly beautiful flowers, candles... and of course, the BOXES!! I am most blessed!!
much love,
Sia
It's hard to believe that it has been over two weeks since my last chemo treatment. The side effects have completely disappeared in the last couple of days and I am also finally feeling better from the surgery... I was able to make a trip over to Reliant to see some of my work buddies!! They gathered boxes for me and came down to the drive through. It was so good to see them - the greatest group I have ever worked with!!
I also had my appointment with the doctors at MDA Integrative Medicine Clinic which was especially encouraging to me. They went over basic diet, exercise, suppliments, and complimentary care for cancer patients and really listened to my personal concerns. One thing that I've found about MDA is that it is a complete package.. but you have to look for all the pieces. My oncologist is a phenominal cancer doctor, but he is so focused on his specialty that his view can be a little one-sided.
For example - I am very concerned about my kidneys. Since I was a small child I have had problems due to oversensitity. When I voiced my concern to Dr. Garrett, his response was, "Well, would you rather die of cancer or lose a kidney - you CAN live without a kidney!" Of course, I don't want to do either. I advised my doctor that he had to "QUIT WATCHING HOUSE!!" :-)
The integrative team is more responsive to those types of personal concerns, and can give me advice to help control side effects and minimize damage to my kidneys. Tomorrow before my chemo, I will meet with a nutritionist to go over specific needs for my type of cancer and chemo and help me to determine the best personal plan!
Tomorrow is another chemo day... so I am off to enjoy this beautiful day! Thank you so much for all your prayers and good wishes - for the cuddly teddy bears, incredibly beautiful flowers, candles... and of course, the BOXES!! I am most blessed!!
much love,
Sia
Monday, November 10, 2008
Life with chemo - or "am I glowing in the dark yet"?
I really do apologize to all of you who are following the blog to have left you in suspense about the chemo. The good news is that it was "not that bad" - the bad news "it will get worse"...
I'm sure that part of it is just anxiety, but mostly I stay very tired and sick at my stomach - like a mild flu. There are some wierd side effects that I'm still trying to adjust to - like sensitity to touch (particularly cold), and a little bit of a jittery feeling like my nerves are all twitching at once. My biggest disappointment was that the side effects increased even after I stopped the treatment (duh - that really is something that I should have known). Somehow I expected the worse to be DURING the 3 days when they were administring treatment but there was a bit of a delayed reaction. Even though we disconnected the pump Friday night, yesterday was probably the worse day. So far today is much better!
That's the quick physical report - nothing really earth shattering - no green skin or sudden immergence of latent super hero skills (ha - silly me - everyone knows that's radiation not chemo!). Although I am a little uncomfortable, I am doing pretty well and am still very thankful for my fantastic support group. My biggest regret is that I wasn't able to get outside more last week - the weather was so incredibly beautiful!
This week I learned that I should have had my teeth cleaned BEFORE starting chemo. Chemo can cause more cavities as well as mouth sores, but due to risk of infection, I can't have any work done while on chemo treatments! Wish I had known that a couple of weeks ago!
I pray that none of you, or anyone you know, ever has to go through the Cancer Experperience, but chances are some of you will. So just maybe, I can use my own lessons learned to help the next person and add some meaning to all this. Let me know if you have any questions, but PLEASE remember that the comments on the Blog are visible to everyone. If you want to send me a personal message, please use my email address!
Moving on from the basic physical report to... continuing personal journey!
This whole new world is difficult for me to adjust to - the world of medical magic! When I accepted the fact that I needed conventional help, there was a part of me that just let go of the "reins". No matter how badly I wanted to believe that I could, I conceded that my desire for natural and simple remedies would not be sufficient - So I passed through the MDA looking glass and became part of their world. I pushed past my fear and basic distrust of "chemical solutions" and resolved myself to "do whatever the doctor ordered" - prepared like Alice to "nibble here" and " eat this"...
Not only is that completely out of character for me, but I've come to realize that it is not necessary. Sure, the doctors are professionals and know the conditions and the drugs, and in most cases they will be able to prescribe the best course of action. But no matter how fantastic the doctors are at MDA or anywhere else, I still believe that every person has to be involved and responsible for their own treatment and condition. "Google before you swallow"... a new version of "look before you leap"!
I was very excited to find out that MDA and the Cancer Society believe that as well. They have a whole area of support known as the "Complementary & Alternative Medicines" where individuals can suppliment their conventional cancer treatments with everything from accupuncture to yoga... nutrition, exercise, prayer and music!
So I am back to exploring my options... oh, I will still follow the prescribed chemo treatments, but at least I feel like I can be an active participant in my own healing process. That's a good thing!
Much love,
Sia
I'm sure that part of it is just anxiety, but mostly I stay very tired and sick at my stomach - like a mild flu. There are some wierd side effects that I'm still trying to adjust to - like sensitity to touch (particularly cold), and a little bit of a jittery feeling like my nerves are all twitching at once. My biggest disappointment was that the side effects increased even after I stopped the treatment (duh - that really is something that I should have known). Somehow I expected the worse to be DURING the 3 days when they were administring treatment but there was a bit of a delayed reaction. Even though we disconnected the pump Friday night, yesterday was probably the worse day. So far today is much better!
That's the quick physical report - nothing really earth shattering - no green skin or sudden immergence of latent super hero skills (ha - silly me - everyone knows that's radiation not chemo!). Although I am a little uncomfortable, I am doing pretty well and am still very thankful for my fantastic support group. My biggest regret is that I wasn't able to get outside more last week - the weather was so incredibly beautiful!
This week I learned that I should have had my teeth cleaned BEFORE starting chemo. Chemo can cause more cavities as well as mouth sores, but due to risk of infection, I can't have any work done while on chemo treatments! Wish I had known that a couple of weeks ago!
I pray that none of you, or anyone you know, ever has to go through the Cancer Experperience, but chances are some of you will. So just maybe, I can use my own lessons learned to help the next person and add some meaning to all this. Let me know if you have any questions, but PLEASE remember that the comments on the Blog are visible to everyone. If you want to send me a personal message, please use my email address!
Moving on from the basic physical report to... continuing personal journey!
This whole new world is difficult for me to adjust to - the world of medical magic! When I accepted the fact that I needed conventional help, there was a part of me that just let go of the "reins". No matter how badly I wanted to believe that I could, I conceded that my desire for natural and simple remedies would not be sufficient - So I passed through the MDA looking glass and became part of their world. I pushed past my fear and basic distrust of "chemical solutions" and resolved myself to "do whatever the doctor ordered" - prepared like Alice to "nibble here" and " eat this"...
Not only is that completely out of character for me, but I've come to realize that it is not necessary. Sure, the doctors are professionals and know the conditions and the drugs, and in most cases they will be able to prescribe the best course of action. But no matter how fantastic the doctors are at MDA or anywhere else, I still believe that every person has to be involved and responsible for their own treatment and condition. "Google before you swallow"... a new version of "look before you leap"!
I was very excited to find out that MDA and the Cancer Society believe that as well. They have a whole area of support known as the "Complementary & Alternative Medicines" where individuals can suppliment their conventional cancer treatments with everything from accupuncture to yoga... nutrition, exercise, prayer and music!
So I am back to exploring my options... oh, I will still follow the prescribed chemo treatments, but at least I feel like I can be an active participant in my own healing process. That's a good thing!
Much love,
Sia
Thursday, November 6, 2008
Liver Biopsy Clean - Chemo Treatment Starts
This is going to be really short and sweet, but I didn't want to keep everyone waiting for the good news. I promise to write more later.
The liver biopsy did not show any cancer cells (yeah!!).. there is a marker in place in case and future testing is required, but for now it looks good!
We started chemo treatments yesterday and I am currently walking around with a "pump in a fanny pack" for the next two days. We didn't get home until after 11 pm so it was an incredibly long day.
More later....
love,
Sia
The liver biopsy did not show any cancer cells (yeah!!).. there is a marker in place in case and future testing is required, but for now it looks good!
We started chemo treatments yesterday and I am currently walking around with a "pump in a fanny pack" for the next two days. We didn't get home until after 11 pm so it was an incredibly long day.
More later....
love,
Sia
Saturday, November 1, 2008
Roller coaster...
There are fairly good days... and some days when I just don't want to get out of bed. I've developed a new addiction to tv because it is something that I can do without any thought or effort on my part whatsoever - but then I'm not sure that's a good thing.
I am still struggling with "doing things"... I LIKE to do things and to be productive. Of course, in honest retrospect, I have been "beating the air" for several years. I do appreciate an opportunity to refocus and redefine my priorities - I just need to find the mental energy to actually DO that!
Now my latest adventure...
I had the liver biopsy on Wednesday, and to be honest, I wasn't expecting it to be such a big deal... but it literally sent me to bed for a couple of days. I've never felt like such a wimp! They use a very tiny needle... and I had to lay completely still for over two hours inside the ct scan machine. They used ct scan and sonogram while inserting the needle in order to get a sample of the exact spot on the liver. The needle has to be pushed in very slowly and then once it is in the right location, it stays there while they ...draw the sample tissue and then take the sample to pathology to verify it is a viable sample. The needle is only removed after confirmation from pathology.
I was awake under a mild sedation throughout the procedure, and one of the most difficult things was having to hold my arms straight above my head without moving... my shoulders completely locked up and I was totally miserable.
Of course, that may have helped to divert my attention from the pain in my solarplexes as the needle went in. Like the old solution for a headache - hit your finger with a hammer!
I have an appointment with my doctor next Wednesday to review the results.
Yesterday was Halloween. All the children at MDA were in costume and "trick or treating" around the halls. They were so adorable. The staff really does go above and beyond.
My kids are having the annual Halloween party tonight... costumes and decorations are always absolutely incredible! Nick & Monica have traditionally celebrated a joint party on Halloween, which is conveniently right in the middle of their birthdays! This year Chris and Gosia are the hosts.... and the theme is "Super Heroes Gone Wrong"... I think Gordon and I will be the "Cobwebs"... We're hoping to at least make an appearance and see all the costumes!
As always... thank you to all of YOU for your support. Special thanks to Betty & Kristen for the bluebonnet tartan bear... to my sister for the edible arrangement & gifts... and especially to Allison for the signed copy of Ian Rankin's new novel - OMG - That was a surprise!!
Much love to you all.
Sia
I am still struggling with "doing things"... I LIKE to do things and to be productive. Of course, in honest retrospect, I have been "beating the air" for several years. I do appreciate an opportunity to refocus and redefine my priorities - I just need to find the mental energy to actually DO that!
Now my latest adventure...
I had the liver biopsy on Wednesday, and to be honest, I wasn't expecting it to be such a big deal... but it literally sent me to bed for a couple of days. I've never felt like such a wimp! They use a very tiny needle... and I had to lay completely still for over two hours inside the ct scan machine. They used ct scan and sonogram while inserting the needle in order to get a sample of the exact spot on the liver. The needle has to be pushed in very slowly and then once it is in the right location, it stays there while they ...draw the sample tissue and then take the sample to pathology to verify it is a viable sample. The needle is only removed after confirmation from pathology.
I was awake under a mild sedation throughout the procedure, and one of the most difficult things was having to hold my arms straight above my head without moving... my shoulders completely locked up and I was totally miserable.
Of course, that may have helped to divert my attention from the pain in my solarplexes as the needle went in. Like the old solution for a headache - hit your finger with a hammer!
I have an appointment with my doctor next Wednesday to review the results.
Yesterday was Halloween. All the children at MDA were in costume and "trick or treating" around the halls. They were so adorable. The staff really does go above and beyond.
My kids are having the annual Halloween party tonight... costumes and decorations are always absolutely incredible! Nick & Monica have traditionally celebrated a joint party on Halloween, which is conveniently right in the middle of their birthdays! This year Chris and Gosia are the hosts.... and the theme is "Super Heroes Gone Wrong"... I think Gordon and I will be the "Cobwebs"... We're hoping to at least make an appearance and see all the costumes!
As always... thank you to all of YOU for your support. Special thanks to Betty & Kristen for the bluebonnet tartan bear... to my sister for the edible arrangement & gifts... and especially to Allison for the signed copy of Ian Rankin's new novel - OMG - That was a surprise!!
Much love to you all.
Sia
Tuesday, October 28, 2008
Quick note about posting comments
Hi All -
Much love,
Monica~
I know many of you have had issues posting comments here and I think I FIX IT! Seems as though the blog was set to only accept comments from users who had "subscribed" to this blog. That setting has been adjusted, so please post comments like crazy :)
Now as long as you have a BlogSpot account, you should be able to post comments here!
PLEASE let me know if you have any problems (and specifically what errors you receive).
Monica~
Saturday, October 25, 2008
More tests...
Well... the big news... no chemo yesterday!
My doctor came into the room about 10 minutes before the chemo was scheduled and said, "I know that you are all prepared to start chemo today, but"...
Let me back up now for a review of the day. First, God sent an angel to help us - Maggie! She is one of the many people dedicated to research at MD Anderson, and I was on her "list". She phoned me a few days ago, to let me know about her role and to give me all the info that I needed about where to be and when - she explained procecures, helped us through bottlenecks and ... perhaps most impressive... validated our parking!
She met Nick and I and led us through the steps.. and believe me, it wasn't an easy schedule. The one thing I regretted most was bringing books to read. We just had to haul them around all day - there was no time to sit and read!!
While I had the "long catheter" inserted at the infusion therapy center, Nick had to go to another building and sit through a class on how to "flush the line". He will have to attend two classes before they will give me the supplies we need for home care - that means that I have to go back to MDA on Saturday (today) to have the dressing cleaned and the line flushed. I can't help but think of all those folks who travel around the world for treatment. You can see why they have to literally move here! I am just thankful that I live about 15 min. from MDA.
Maggie's research follows the side effects and symptoms of the type of chemo that I have been prescribed, so I had to do a series of tests to give them a marker for future reference. One of the most noteable side effects is temporary short term memory loss. (no jokes here from family or friends... we ALL know that I have a hard time remembering everyone's birthdays!)
I had to complete a number of tasks, like repeating long series of numbers (which I suck at)... and remembering long lists of words (which I was pretty good at)... among many other things. At one point, I had to repeat series of numbers (up to 7 or 8 numbers) backwards!! Is there ANYONE who can do that?? Probably Nick!
Maggie helped me tremendously with her very honest explanation of "what to expect from chemo"! The really ironic thing is that I had finally come to terms and was not afraid of the treatment. The regiment that I have been prescribed will not have all the horrible side effects that haunted my thoughts (visions of what my father went through). After the morning with Maggie, I felt prepared.
Then the last thing on my schedule before reporting to the chemotherapy unit, was a review with my doctor! After reviewing my tests from last week, they identified a couple of "spots" on my liver which he feels we should biopsy BEFORE we start the chemo. The issue is that chemo treatments can mask the spots without actually curing cancer. If the spots are cancerous, then they can identify and remove just those small spots. If cancer is confirmed but the specific spots are not visible via ct scans (ie: due to chemo), then they would have to remove a large section of the liver (not a good thing!) The procedure for the biopsy is very simple.. and should be completed next week. Once they have completed the biopsy and have the results back, then I will start chemo probably November 7th.
Just a word about "spots"... it is very possible that these are just small "fat" cells - (maybe left over tequila shots?) the biopsy is just a precaution. If it wasn't for the whole "masking" thing then it would not even be an issue.
I admit that I was very anxious... ok scared silly... but I'm better now and ready for whatever! Lots of good thoughts, prayers and words of encouragement from all of you!!
As always..
Thank you and much love,
Sia
My doctor came into the room about 10 minutes before the chemo was scheduled and said, "I know that you are all prepared to start chemo today, but"...
Let me back up now for a review of the day. First, God sent an angel to help us - Maggie! She is one of the many people dedicated to research at MD Anderson, and I was on her "list". She phoned me a few days ago, to let me know about her role and to give me all the info that I needed about where to be and when - she explained procecures, helped us through bottlenecks and ... perhaps most impressive... validated our parking!
She met Nick and I and led us through the steps.. and believe me, it wasn't an easy schedule. The one thing I regretted most was bringing books to read. We just had to haul them around all day - there was no time to sit and read!!
While I had the "long catheter" inserted at the infusion therapy center, Nick had to go to another building and sit through a class on how to "flush the line". He will have to attend two classes before they will give me the supplies we need for home care - that means that I have to go back to MDA on Saturday (today) to have the dressing cleaned and the line flushed. I can't help but think of all those folks who travel around the world for treatment. You can see why they have to literally move here! I am just thankful that I live about 15 min. from MDA.
Maggie's research follows the side effects and symptoms of the type of chemo that I have been prescribed, so I had to do a series of tests to give them a marker for future reference. One of the most noteable side effects is temporary short term memory loss. (no jokes here from family or friends... we ALL know that I have a hard time remembering everyone's birthdays!)
I had to complete a number of tasks, like repeating long series of numbers (which I suck at)... and remembering long lists of words (which I was pretty good at)... among many other things. At one point, I had to repeat series of numbers (up to 7 or 8 numbers) backwards!! Is there ANYONE who can do that?? Probably Nick!
Maggie helped me tremendously with her very honest explanation of "what to expect from chemo"! The really ironic thing is that I had finally come to terms and was not afraid of the treatment. The regiment that I have been prescribed will not have all the horrible side effects that haunted my thoughts (visions of what my father went through). After the morning with Maggie, I felt prepared.
Then the last thing on my schedule before reporting to the chemotherapy unit, was a review with my doctor! After reviewing my tests from last week, they identified a couple of "spots" on my liver which he feels we should biopsy BEFORE we start the chemo. The issue is that chemo treatments can mask the spots without actually curing cancer. If the spots are cancerous, then they can identify and remove just those small spots. If cancer is confirmed but the specific spots are not visible via ct scans (ie: due to chemo), then they would have to remove a large section of the liver (not a good thing!) The procedure for the biopsy is very simple.. and should be completed next week. Once they have completed the biopsy and have the results back, then I will start chemo probably November 7th.
Just a word about "spots"... it is very possible that these are just small "fat" cells - (maybe left over tequila shots?) the biopsy is just a precaution. If it wasn't for the whole "masking" thing then it would not even be an issue.
I admit that I was very anxious... ok scared silly... but I'm better now and ready for whatever! Lots of good thoughts, prayers and words of encouragement from all of you!!
As always..
Thank you and much love,
Sia
Thursday, October 23, 2008
Today is hard…
Today is hard, because yesterday was wonderful. Today is hard, because tomorrow is in front of me like a big, dark cloud.
I have no idea who is really reading this blog, but I do hear from many folks who say that they do. We’ve tried to keep it upbeat through this process, but maybe that’s not fair. Cancer sucks. Every day is not going to be good…
I woke up yesterday with a pretty clear mind and spent the day sorting through paperwork, organizing bills and trying to “get a grip” on this whole process logistically. Basic stuff, like “how much is this really going to cost me each time I go to the hospital”?? I had this whole idea that maybe I should delay treatments for a while – maybe it made sense “financially” to wait until the first of the year? I called my insurance company (always a joy), and all the “helpful contacts from MDA” with lists of questions for each of them – it was suddenly so important for me to know specifics –– Reality is that my insurance is fine and there is no logical reason financially to wait… but really I was only desperately looking for a “way out”.
There is so much that I don’t know about what’s about to happen to me and it all starts tomorrow - any idea that I might have some control over this process will be gone when I check in tomorrow morning. OK – that may sound a little melodramatic, even for me… but hey, this is MY blog! J
The truth is.. that IS how it feels - like I’ve lost all control. I don’t want any of this… I don’t want cancer, or doctors, or even medicine.
Tomorrow they will insert a long catheter into my vein with a “quick connect” that will stay in place for the next six months. The good news is that they won’t have to continually be looking for a vein to draw blood or for an IV – just go right in through the connection. I’ll be at the hospital from 9am until after 7pm - from 3:30 on I’ll be juicing up on chemo, and will leave with a pump that will continue for two days. I go back on Sunday to have the pump removed and then wait two weeks to do it all over again.
Frankly the whole idea is so foreign and freaky that I couldn’t even sleep last night and I sat and cried with my morning coffee. I know that sounds horribly full of self-pity.. but that’s not really accurate either. I just needed to cry.
I am so very thankful for a huge, wonderful support group. I know that cancer research has come a very long way and that there are many of YOU who are survivors and have already been through this whole process.
I guess I just had to have my moment - To let all my loved ones know that they are needed and appreciated… especially on days like today.
Mucho love,
Sia
Today is hard, because yesterday was wonderful. Today is hard, because tomorrow is in front of me like a big, dark cloud.
I have no idea who is really reading this blog, but I do hear from many folks who say that they do. We’ve tried to keep it upbeat through this process, but maybe that’s not fair. Cancer sucks. Every day is not going to be good…
I woke up yesterday with a pretty clear mind and spent the day sorting through paperwork, organizing bills and trying to “get a grip” on this whole process logistically. Basic stuff, like “how much is this really going to cost me each time I go to the hospital”?? I had this whole idea that maybe I should delay treatments for a while – maybe it made sense “financially” to wait until the first of the year? I called my insurance company (always a joy), and all the “helpful contacts from MDA” with lists of questions for each of them – it was suddenly so important for me to know specifics –– Reality is that my insurance is fine and there is no logical reason financially to wait… but really I was only desperately looking for a “way out”.
There is so much that I don’t know about what’s about to happen to me and it all starts tomorrow - any idea that I might have some control over this process will be gone when I check in tomorrow morning. OK – that may sound a little melodramatic, even for me… but hey, this is MY blog! J
The truth is.. that IS how it feels - like I’ve lost all control. I don’t want any of this… I don’t want cancer, or doctors, or even medicine.
Tomorrow they will insert a long catheter into my vein with a “quick connect” that will stay in place for the next six months. The good news is that they won’t have to continually be looking for a vein to draw blood or for an IV – just go right in through the connection. I’ll be at the hospital from 9am until after 7pm - from 3:30 on I’ll be juicing up on chemo, and will leave with a pump that will continue for two days. I go back on Sunday to have the pump removed and then wait two weeks to do it all over again.
Frankly the whole idea is so foreign and freaky that I couldn’t even sleep last night and I sat and cried with my morning coffee. I know that sounds horribly full of self-pity.. but that’s not really accurate either. I just needed to cry.
I am so very thankful for a huge, wonderful support group. I know that cancer research has come a very long way and that there are many of YOU who are survivors and have already been through this whole process.
I guess I just had to have my moment - To let all my loved ones know that they are needed and appreciated… especially on days like today.
Mucho love,
Sia
Saturday, October 18, 2008
Back to Houston
The days are just flying by... and yet it seems like so much has happened in the last few. Tuesday I saw the surgeon in Dallas and she said that I was "healing nicely". She also mentioned that it is normal following this type of surgery to have "zero stamina"... I told her that I had found that out on my own! Dr. Leverton was an absolute angel... I am so thankful for the care that she provided at just the right time. Her office also responded very quickly to send my records to MD Anderson and as a result, instead of taking another 2 weeks, I got a call from them the same day (last Tuesday) that they wanted to see me on Friday!
My youngest son, David, flew to Dallas Wednesday morning and drove me back to Houston the same day. It was a little hard to leave Dallas - I was having too much fun with Monica, E and Garrett!! But it was good to see my own home again - I hadn't been there since before the hurricane! Vixi (my dog) was super excited! She wasn't sure what was going on!
Yesterday (10/17), I started my journey as an official patient at MD Anderson. My son, Nick, stayed with me the whole day - the kids are really great at tag-teaming me!! MD Anderson is the best - it is also huge and has so many patients that it can be very overwhelming, especially to us "sick people"! My new doctor, Chris Garrett, is excellent - he explained the options and the statistics... I won't bore you with the technical stuff.. but I'll be taking two types of chemo once every two weeks for 6 months. Everyone responds differently to the drugs, so he can't really tell me what to expect. I'll start my first treatments next Friday. So I guess it's one-two-three-go...
After meeting with the doc, he sent me on my way for a day of testing. I was there from 7am until after 5 and it was incredibly tiring. The nurse handed us a print out of my schedule with where we needed to be and what time and what test... I felt a little like it was my first day at college.
Just a funny side note: Nick is still recovering from a broken foot (a souvenir from his brother's bachelor party).. he is just off his crutches and is still walking with a cane - but he went with me to all my appointments . At one point, one of the nurses told me that I'd have to wait outside... she thought HE was the patient!
Nick carried two backpacks and a laptop and was studying and working the whole day, and he still kept me and the hospital staff in line! If it hadn't been for him, I'd probably still be sleeping in one of the waiting areas. There was a problem with the ct scannners.. and they had 3 or 4 waiting rooms full of patients waiting for the tests. Somehow they just forgot me... Nick managed to get the ball rolling, not just for me, but for all the folks waiting with me. He better be careful or they'll end up offering him a job!!
On the way home, we stopped for some Greek food at Nikko's (I LOVE the potatoes).. It was the first food I'd had since the day before so it was fantastic! I had hoped that after my appt. I might get over to Ros and Paul's for a house concert - Jed, Mason & Hugh are some personal favorites of mine.. But by the time I got home from the hospital, it was all I could do to pull myself into bed. As Nick left (to go to work!)... Gordon "tagged into the ring" and stayed with me last night and today before flying off to Brazil for work! Now David is back here with me!
Everyone has been thoughtful and caring - there is no way for me to express how much it has meant to me. I am so blessed. I have so many family members and friends who are offering to help, and I appreciate every one of you more than I can say... Please know that I would love to see each and every one of you, but I am very tired and really do need some quiet time.
Practically speaking, this is not going to be an "easy fix"... unfortunately, it is going to be a real journey. I looked around that hospital yesterday and it just broke my heart to see so many people, most of them a lot worse than me. But at the same time, I saw folks with such courage and determination - people who were willing in the midst of their own personal trials, to offer directions, a word of encouragement, or share their warm sense of humor. I think I will learn a lot at MD Anderson.
My youngest son, David, flew to Dallas Wednesday morning and drove me back to Houston the same day. It was a little hard to leave Dallas - I was having too much fun with Monica, E and Garrett!! But it was good to see my own home again - I hadn't been there since before the hurricane! Vixi (my dog) was super excited! She wasn't sure what was going on!
Yesterday (10/17), I started my journey as an official patient at MD Anderson. My son, Nick, stayed with me the whole day - the kids are really great at tag-teaming me!! MD Anderson is the best - it is also huge and has so many patients that it can be very overwhelming, especially to us "sick people"! My new doctor, Chris Garrett, is excellent - he explained the options and the statistics... I won't bore you with the technical stuff.. but I'll be taking two types of chemo once every two weeks for 6 months. Everyone responds differently to the drugs, so he can't really tell me what to expect. I'll start my first treatments next Friday. So I guess it's one-two-three-go...
After meeting with the doc, he sent me on my way for a day of testing. I was there from 7am until after 5 and it was incredibly tiring. The nurse handed us a print out of my schedule with where we needed to be and what time and what test... I felt a little like it was my first day at college.
Just a funny side note: Nick is still recovering from a broken foot (a souvenir from his brother's bachelor party).. he is just off his crutches and is still walking with a cane - but he went with me to all my appointments . At one point, one of the nurses told me that I'd have to wait outside... she thought HE was the patient!
Nick carried two backpacks and a laptop and was studying and working the whole day, and he still kept me and the hospital staff in line! If it hadn't been for him, I'd probably still be sleeping in one of the waiting areas. There was a problem with the ct scannners.. and they had 3 or 4 waiting rooms full of patients waiting for the tests. Somehow they just forgot me... Nick managed to get the ball rolling, not just for me, but for all the folks waiting with me. He better be careful or they'll end up offering him a job!!
On the way home, we stopped for some Greek food at Nikko's (I LOVE the potatoes).. It was the first food I'd had since the day before so it was fantastic! I had hoped that after my appt. I might get over to Ros and Paul's for a house concert - Jed, Mason & Hugh are some personal favorites of mine.. But by the time I got home from the hospital, it was all I could do to pull myself into bed. As Nick left (to go to work!)... Gordon "tagged into the ring" and stayed with me last night and today before flying off to Brazil for work! Now David is back here with me!
Everyone has been thoughtful and caring - there is no way for me to express how much it has meant to me. I am so blessed. I have so many family members and friends who are offering to help, and I appreciate every one of you more than I can say... Please know that I would love to see each and every one of you, but I am very tired and really do need some quiet time.
Practically speaking, this is not going to be an "easy fix"... unfortunately, it is going to be a real journey. I looked around that hospital yesterday and it just broke my heart to see so many people, most of them a lot worse than me. But at the same time, I saw folks with such courage and determination - people who were willing in the midst of their own personal trials, to offer directions, a word of encouragement, or share their warm sense of humor. I think I will learn a lot at MD Anderson.
Tuesday, October 7, 2008
Sitting around healing...
Just thought it was time to give you an update. I have felt a lot like I got hit by a very big truck! I think I’ve just about figured out the right balance between pain and drugs. That was the hardest for me because I really dislike taking drugs of any kind, but they were my friend for a while there! I am still at my daughter’s house in Dallas and will have to stay here for at least another couple of weeks to get clearance from my surgeon. The surgery went really well. The doctor was absolutely brilliant! She managed to do the surgery with the smallest possible incisions so I can still keep my fantasy about wearing my bikini in the Bahamas ! :J
We got the final report from the surgery. The tumor was 15 cm and had spread through the colon wall. There was cancer confirmed in one of the 17 lymph nodes that were tested - which means that it is early stage 3 cancer and will require chemo treatments.
It was a little disappointing to find out that the cancer had spread into the lymph nodes – we were really all hoping I could avoid chemo…. But looks like I will have to follow up, hopefully at MD Anderson. I think the hardest thing for me with that is that I had to watch my dad battle cancer for 6 years. Of course, they have made a lot of progress since then, so I’ll try not to completely panic until I’ve actually talked to an oncologist.
I really do believe that “all things work together for good for them that love God”.. so I’m looking for the blessings! It is certainly an opportunity to take inventory and focus my energy. I have to remember that my life completely changed for the better after the house fire and I sincerely believe that God can turn negatives into positives! I figure there should be some REALLY good positives from this one! I've already started working on some of my songs and hope to finally finish a new cd!
Anyway, I'm not very good at all the details, but the quick overview - I'm doing much better. I still sleep most of the day, but have managed to drop my pain meds from every 8 min. to once every 10-12 hours, so i am gradually regaining some clarity of thought. I am on a low fiber- low residue diet.... which means I can eat all the things that i never ate before and none of the things that I was eating. Just to illustrate, it's referred to as the "twinkie diet"... :-) I can't eat raw fruits, veggies or nuts... just white bread, white rice, ice cream, pasta... you get the picture. Not a very good diet for the bikini
There really shouldn't be much to report for the next few weeks. I have a check up scheduled with the surgeon on the 14th, and hope to confirm an appointment with the oncologist sometime towards the end of the month. I am feeling a lot stronger and am checking both work and personal emails daily now - so I'd love to hear from you!
I want to especially thank Mary for her healing wisdom and guidance; Sondra, Eagle and Jeena for the herbs and prayers; and all of you who sent me the wonderful words of encouragement and beautiful cards. Of course, my deepest gratitude to my beautiful daughters and grandson, who have actually made this journey a fun adventure! I am so blessed.
Much love and gratitude,
Sia
We got the final report from the surgery. The tumor was 15 cm and had spread through the colon wall. There was cancer confirmed in one of the 17 lymph nodes that were tested - which means that it is early stage 3 cancer and will require chemo treatments.
It was a little disappointing to find out that the cancer had spread into the lymph nodes – we were really all hoping I could avoid chemo…. But looks like I will have to follow up, hopefully at MD Anderson. I think the hardest thing for me with that is that I had to watch my dad battle cancer for 6 years. Of course, they have made a lot of progress since then, so I’ll try not to completely panic until I’ve actually talked to an oncologist.
I really do believe that “all things work together for good for them that love God”.. so I’m looking for the blessings! It is certainly an opportunity to take inventory and focus my energy. I have to remember that my life completely changed for the better after the house fire and I sincerely believe that God can turn negatives into positives! I figure there should be some REALLY good positives from this one! I've already started working on some of my songs and hope to finally finish a new cd!
Anyway, I'm not very good at all the details, but the quick overview - I'm doing much better. I still sleep most of the day, but have managed to drop my pain meds from every 8 min. to once every 10-12 hours, so i am gradually regaining some clarity of thought. I am on a low fiber- low residue diet.... which means I can eat all the things that i never ate before and none of the things that I was eating. Just to illustrate, it's referred to as the "twinkie diet"... :-) I can't eat raw fruits, veggies or nuts... just white bread, white rice, ice cream, pasta... you get the picture. Not a very good diet for the bikini
There really shouldn't be much to report for the next few weeks. I have a check up scheduled with the surgeon on the 14th, and hope to confirm an appointment with the oncologist sometime towards the end of the month. I am feeling a lot stronger and am checking both work and personal emails daily now - so I'd love to hear from you!
I want to especially thank Mary for her healing wisdom and guidance; Sondra, Eagle and Jeena for the herbs and prayers; and all of you who sent me the wonderful words of encouragement and beautiful cards. Of course, my deepest gratitude to my beautiful daughters and grandson, who have actually made this journey a fun adventure! I am so blessed.
Much love and gratitude,
Sia
Wednesday, October 1, 2008
Day 7
First, I apologize for the delay in posting (it's been a bit hectic here *cough cough*).
Yesterday, Mom ate chicken noodle soup for dinner and she was SO excited about the noodles, she ate every last one... I actually missed it, as I went back to work yesterday and my dear friend Lola came and Mom-sat :) This was the first pseudo-solid food Mom ate in over 2 weeks! Tonight she had pork tenderloin, potato cakes and carrots - one heck of a meal for a vegetarian.
She is really doing quite great... Dr. Leverton took her off the morphine today and changed to an oral vicodin to control pain. Provided we make it through the night tonight, we will be going home tomorrow (YEA!!!!!!!) She will be on a low fiber diet for the next 3 weeks, which means Mom will not be able to continue down the vegetarian path, at least for now, as she will not be allowed to eat any raw veggies, fresh fruits or nuts (which was ALL she ate before)... so this could get interesting.
Dr. Leverton recommended waiting at least another 3 weeks prior to starting the chemo treatment. My brother Nick and I are coordinating to get the referral completed with MD Anderson. This process takes 10 business days, so if all goes as planned we should get an oncologist just in time to move Mom back to Houston and start chemo (fingers crossed). Unfortunately, until we meet with the oncologist in Houston we will not know any of the details about the chemo treatment plan that will be required (which type, how long, what the side effects will be, etc.)... we only know it is a must.
Mom is in high spirits, however, her energy level is extremely low, so again I will encourage you all to send your love virtually whenever possible, instead of calling :) She really has so many phone calls she would love to make, but even a 2 minute phone call seems to completely wipe her out. I expect this to improve once the morphine is all out of her system, however, vicodin is a pretty heavy drug also, so we shall see.
Tomorrow will be quite hectic just getting Mom situated in a new environment (and right after I learned all the ropes here). Our next big challenge will be figuring out how to keep my dogs and Mom's dog (Vixie) at a safe distance at least for the first few days... we are thinking of giving Mom my bedroom (my bed is the lowest to the ground, plus the master bath is much closer to the bed than the guest bath/bedroom setup), then we can put a baby-gate in front of the bedroom door so the dogs can say hi with invading on her space too much.
That all for now.... much love to all!
Monica~
Yesterday, Mom ate chicken noodle soup for dinner and she was SO excited about the noodles, she ate every last one... I actually missed it, as I went back to work yesterday and my dear friend Lola came and Mom-sat :) This was the first pseudo-solid food Mom ate in over 2 weeks! Tonight she had pork tenderloin, potato cakes and carrots - one heck of a meal for a vegetarian.
She is really doing quite great... Dr. Leverton took her off the morphine today and changed to an oral vicodin to control pain. Provided we make it through the night tonight, we will be going home tomorrow (YEA!!!!!!!) She will be on a low fiber diet for the next 3 weeks, which means Mom will not be able to continue down the vegetarian path, at least for now, as she will not be allowed to eat any raw veggies, fresh fruits or nuts (which was ALL she ate before)... so this could get interesting.
Dr. Leverton recommended waiting at least another 3 weeks prior to starting the chemo treatment. My brother Nick and I are coordinating to get the referral completed with MD Anderson. This process takes 10 business days, so if all goes as planned we should get an oncologist just in time to move Mom back to Houston and start chemo (fingers crossed). Unfortunately, until we meet with the oncologist in Houston we will not know any of the details about the chemo treatment plan that will be required (which type, how long, what the side effects will be, etc.)... we only know it is a must.
Mom is in high spirits, however, her energy level is extremely low, so again I will encourage you all to send your love virtually whenever possible, instead of calling :) She really has so many phone calls she would love to make, but even a 2 minute phone call seems to completely wipe her out. I expect this to improve once the morphine is all out of her system, however, vicodin is a pretty heavy drug also, so we shall see.
Tomorrow will be quite hectic just getting Mom situated in a new environment (and right after I learned all the ropes here). Our next big challenge will be figuring out how to keep my dogs and Mom's dog (Vixie) at a safe distance at least for the first few days... we are thinking of giving Mom my bedroom (my bed is the lowest to the ground, plus the master bath is much closer to the bed than the guest bath/bedroom setup), then we can put a baby-gate in front of the bedroom door so the dogs can say hi with invading on her space too much.
That all for now.... much love to all!
Monica~
Tuesday, September 30, 2008
Day 5
Mom is still busy working her way through surgery recovery. The last 24+ hours have been a bit rough, but we are pushing through it.
Dr. Leverton visited us this morning with the biopsy results we were waiting on. She confirmed that the cancer was early Stage 3 (1 out of 17 lymph nodes tested were positive for cancer) and chemo will be required after Mom is fully recovered from the surgery (3-5 weeks).
We are hoping to bring Mom back to our house this Thursday, but do not know for sure yet. Nick will help us work with MD Anderson to get her set up with an oncologist to finalize the treatment plan for Mom's return to Houston (looking like early November at this point).
Please note that it is very hard for Mom to talk on the phone still, so it is really best to send emails/texts at this point.
xoxox
Monica~
Dr. Leverton visited us this morning with the biopsy results we were waiting on. She confirmed that the cancer was early Stage 3 (1 out of 17 lymph nodes tested were positive for cancer) and chemo will be required after Mom is fully recovered from the surgery (3-5 weeks).
We are hoping to bring Mom back to our house this Thursday, but do not know for sure yet. Nick will help us work with MD Anderson to get her set up with an oncologist to finalize the treatment plan for Mom's return to Houston (looking like early November at this point).
Please note that it is very hard for Mom to talk on the phone still, so it is really best to send emails/texts at this point.
xoxox
Monica~
Saturday, September 27, 2008
Day 2
First, I want to thank EVERYONE for all the wonderful emails, posts, texts, phone calls, visits and flowers... it has been unbelievably amazing to see so many people support my Mom and our family in such a way.
Mom has overcome the first hurdle with the grace and strength we all know and love her for... Dr. Leverton was very pleased at how well the surgery went, particularly that it was completed using the laparoscopic method (which Mom wanted). MD Anderson in Houston told us that their surgeons would not even attempt the laparoscopic colon resectioning surgery (open surgery is the standard procedure for colon resection).
Some of the common advantages of "Laparoscopic" vs. "open" surgery are:
Standard procedure is to biopsy at least 12 nearby lymph nodes surrounding the tumor during the surgery, we expect these results early next week and this will tell us if the cancer was late stage 2 or early stage 3 and assist in the treatment plan moving forward.
I understand that for some of you this may clearly be far too much information, however, it is important to some and therefore I feel compelled to provide it.
Mom had a really good day today (actually as good as could be expected the day after an extremely painful surgery), she walked around the 6th floor twice today and drank a little veggie broth for dinner tonight. She will not be running any footraces this week, however, honestly she is being such a trooper, especially for someone who absolutely hates hospitals!
Much love to all,
Monica~
P.S. For those of you who know my Mom well, you will be comforted to know she is still crackin jokes!
Mom has overcome the first hurdle with the grace and strength we all know and love her for... Dr. Leverton was very pleased at how well the surgery went, particularly that it was completed using the laparoscopic method (which Mom wanted). MD Anderson in Houston told us that their surgeons would not even attempt the laparoscopic colon resectioning surgery (open surgery is the standard procedure for colon resection).
Some of the common advantages of "Laparoscopic" vs. "open" surgery are:
- Colon function normalizes faster
- Faster recovery time and shorter hospitalization
- Less postoperative pain
- Smaller incisions (also smaller scars)
Laparoscopic colon surgery was only introduced about 12 years ago and currently only approximately 3% of all colon resections are performed using this method in the US. Explanations for this may include, surgeon resistance to accepting this procedure as comparable to traditional operations; lack of surgeon experience with minimally invasive techniques; that laparoscopic colon surgery is an advanced procedure that takes a long period of time to master.
The role of laparoscopic techniques in the treatment of colon cancer is currently still being examined by the National Cancer Institute, however, results thus far have been favorable or equal when comparing laparoscopic to open surgeries (this technique has not yet been approved by NCI).Standard procedure is to biopsy at least 12 nearby lymph nodes surrounding the tumor during the surgery, we expect these results early next week and this will tell us if the cancer was late stage 2 or early stage 3 and assist in the treatment plan moving forward.
I understand that for some of you this may clearly be far too much information, however, it is important to some and therefore I feel compelled to provide it.
Mom had a really good day today (actually as good as could be expected the day after an extremely painful surgery), she walked around the 6th floor twice today and drank a little veggie broth for dinner tonight. She will not be running any footraces this week, however, honestly she is being such a trooper, especially for someone who absolutely hates hospitals!
Much love to all,
Monica~
P.S. For those of you who know my Mom well, you will be comforted to know she is still crackin jokes!
NO TEQUILA !!!!!
As of 10:47 AM on Sat Sept 27 ,2008:
Sia has sat up a couple of times and even taken a short walk around the 6th floor. The down side is NO TEQUILA on the menu!!! But seems all is going very well will up date you more as I get the info. But I figure if she is joking about NO TEQUILA on the menu then all must be well at the moment. Someone take her a VANILLA BOTTLE!!!!!!!!!!!!!!!! LOL Much Love and Hugs Sias Lil Sis Sue (ALOHA LEE)
Sia has sat up a couple of times and even taken a short walk around the 6th floor. The down side is NO TEQUILA on the menu!!! But seems all is going very well will up date you more as I get the info. But I figure if she is joking about NO TEQUILA on the menu then all must be well at the moment. Someone take her a VANILLA BOTTLE!!!!!!!!!!!!!!!! LOL Much Love and Hugs Sias Lil Sis Sue (ALOHA LEE)
Friday, September 26, 2008
room info
OK EVERYBODY,just to let you know Sia is doing well went thru surgery beautifully, and is now in her own room. Even thought she still pretty out of it this is to be expected.Here is the info for her room . PRESBYTERIAN HOSPITAL 6200 W. PARKER RD. ROOM #677C-TOWER, PLANO TX 75093.more info to come tomorrow much love Sue(Aloha Lee)
officially started
At 2:14 pm friday sept 26 2008,
surgery started about 45 min ago. they just came out with an up date .all is going as planed so far, we will have another up date around 3:00 pm .
as of 3:04 pm LAPROSCOPY SUCCESSFUL . AS OF 3:53 PM SIA is OUT of SURGERY not quite awake but doning fine . which we all knew she would more updates as they come.
surgery started about 45 min ago. they just came out with an up date .all is going as planed so far, we will have another up date around 3:00 pm .
as of 3:04 pm LAPROSCOPY SUCCESSFUL . AS OF 3:53 PM SIA is OUT of SURGERY not quite awake but doning fine . which we all knew she would more updates as they come.
Sharing is caring.
Surgery is schedule to begin between 12-12:30 and is expected to last approximately 3-5 hours. We have been told that an OR nurses will come out to provide updates to us at least every 2 hours. Unfortunately none of us get cell service in hospital (we have to walk all the way out of the hospital) and there have been so many emails coming in wanting phone calls or emails following the surgery and there is simply not a way for me to accommodate, however, Aloha Suzanne (my wonderful Aunt Sue) will be updating this blog later today to let everyone know how Mom is doing.
Gordon, Mom, E, Garrett and I will be leaving for the hospital in a couple hours... my Grandmother will also meet us there. Nick, Chris, Gosia, and Sue will be driving up later this afternoon from Houston and we have worked out a system to keep my oldest brother Daniel, who is in Brazil and really hating being so far right now, informed throughout the day (he is definitely here with us in spirit!) My youngest brother David will be working in Houston through the weekend, but will come up later next week (which will provide some much appreciated help to E and me after everyone else has gone home).
Instead of me telling you guys how clear Mom's head is or how strong her heart is, please read the below note from her:
Today is the day for surgery and thanks to all of you and a very loving God, I feel strong and hopeful (my hair and nails look great too!) :)
I am so very blessed with the greatest kids, family and friends that anyone could ever ask for. Everyone has been so supportive and encouraging - I can never thank you enough. Especially Gordon, Monica and Ros who really did go above and beyond (my twisted arm is healing nicely - thank you). As much as I hate to admit it.. the Blog was really a great idea!
First of all it was a great idea, because it provided an excellent tool to keep everyone informed, without completely overloading Monica and Gordon. But even more so, it was great because it forced me to share. I have always loved to share good things... but it is really difficult to share needs or hurt. Since I was "forced" to share and to reach out to my wonderful "network" - I have gained so much strength from all of you.
Not long ago, I finally finished writing my "Mission Statement". It was something I started quite some time ago as a result of reading the "7 Habits of Highly Effective People". This may seem strange to some of you, but one of my greatest desires is to live simply. That is not an easy thing to do in this world where everything seems so urgent and so important. When a serious illness comes into your life, it suddenly makes it much easier to see your priorities. This is definitely a good time for me to sit back emotionally and evaluate. For that I am thankful. One of my friends said last night that this experience should be worth at least one song! :)
The first point on my mission statement was to glorify God, to "let His light shine". I remember hearing as a young child, that the light from one candle can be seen from a long distance when it is dark outside. It's a little dark right now for me, but I can see so much of His light shining through each of you, in your wonderful words of encouragement. By sharing my "darkness" - I've been blessed with your light! You guys really are the best!
I'm sure that there will be lots of information posted later about the surgery (My sister is in on it too now!)
Thank you for sharing the journey with me.
All my love and gratitude...
Sia
PS. Can't wait to eat some haggis, neeps and tatties!
Wednesday, September 24, 2008
We had a pedicure party tonight...
E (my little sister Elizabeth) and I took Mom to get pedicures tonight, so she is officially ready for the extended visit to the hospital (Hair – check. New PJs – check. Nails – check.)
Mom has thoroughly enjoyed having us read these comments to her, so please keep sending them… it makes her so happy to hear from all of you!
Much love,
Monica~
Monica~
Monday, September 22, 2008
Against her will...
As many of you may already know, my Mom is very much a hippie at heart especially when it comes to modern medicine, 6 kids at home with a midwife, no doctors, no hospitals, and no drugs, need I say more. The only things that have proved to be more challenging than dragging her to doctor appointments and the seemingly endless tests at hospitals all over town, has been convincing her to let my sister and I HELP her with the little things and share with all her friends and our enormous family the details of her diagnosis and her treatment.
Due to the size of our family and the tremendous amount of friends who are concerned about her wellbeing, we set up this blog to keep everyone informed and allow people to post comments here (which I will print and read to Mom so she knows what a huge support group she has behind her).
For those who may have missed some of the happenings over the past 2 weeks, here is a quick recap of events:
Friday, September 5th: Mom had a colonoscopy in Houston at Kelsey Sebold Clinic (after much arm twisting and many threats from her wonderful beau Gordon) where they identified a rather large tumor located just past the turn at the top of the rectum where the colon starts. The young doctor who performed the colonoscopy was unable to complete the test as she was afraid to attempt passing the tumor for fear she could puncture the colon wall. SIDE NOTE: If it wasn’t for Gordon we would absolutely not be as far through the process as we are today and from all of Mom’s kids we cannot possibly thank him enough!
Tuesday, September 9th: Gordon again stepped up and drug Mom kicking and screaming to see the Kelsey Sebold Colon Surgeon. Although at this point all we knew was they were recommending surgery to remove the tumor, yet we didn’t have the biopsy results or really any other information yet.
Wednesday, September 10th: The biopsy results were returned positive for rectal cancer. We filed transfer paperwork with MD Anderson (7-10 business day file review process) and scheduled further tests with Kelsey Sebold.
Thursday, September 11th: Mom came to Dallas, not to avoid the hurricane but to allow me to try and speed up the cancer staging testing, as Kelsey Sebold was not providing comprehensive information and we (her kids) did not at all have a comfort level with their abilities to complete the surgery or even the staging tests needed. Plus, due to the hurricane quickly approaching the Texas coastline everything in Houston was coming to a screeching halt.
Friday, September 12th: Hurricane Ike. I took Mom to Presbyterian Hospital of Plano ER to have some tests run (x-ray to check on the blockage in her colon and blood work to make sure all her other organs were working properly) – Doctor Z said that she was the healthiest sick lady he had seen all day, but just in case the hurricane put Houston out of commission for longer than the weekend, he gave us 2 referrals to Colon Surgeons in Dallas.
Tuesday, September 16th: We met with Doctor Julie Leverton (http://www.texascolon.com/leverton.html), she is a Colon and Rectal Surgeon in Plano near where Elizabeth and I live. During our first one hour office visit with Dr. Leverton we learned more about the process and procedures for staging and surgery than Mom had in multiple visits and conversations with Kelsey Sebold in Houston.
Wednesday, September 17th: CT Scan with barium at Centennial Hospital in Frisco (where we live). This test is part of the staging tests to identify if there are tumors or cancer cells present in other organs (Colon and Rectal Cancers typically spread first to liver, lungs, or ovaries). The CT Scan came back “clean” with the exception of 2 small “spots” of concern on the left lung which will need to be monitored and further tested after her surgery, however, at this point Dr. Leverton said these do not appear to be the cancer spreading.
Thursday, September 18th: Second colonoscopy at Plano Baylor to make sure there are no further tumors in the remainder of the colon. Dr. Leverton identified the cancer as a late stage 2 or early stage 3 and that the tumor has created a 98% blockage of the colon. The need for surgery is urgent (meaning we could not wait any longer than 3 weeks) and although chemotherapy will be required, Mom will not have to additionally go through radiation and due to the location of the tumor there will be no colostomy (which is great news).
MD Anderson was unable to even schedule the surgery for 4-5 weeks due to the backlog caused by the Hurricane Ike aftermath, however, we were able to change her Surgery Referral (filed the week before) to a Chemotherapy Referral. The plan will be surgery in Dallas and Chemo in Houston at MD Anderson after recovery (4-6 weeks).
Stage II
In stage II, cancer has spread outside the rectum to nearby tissue, but it has not gone into the lymph nodes.
Stage III
In stage III, cancer has spread to nearby lymph nodes, but it has not spread to other parts of the body.
Friday, September 19th: Elizabeth and I drove Mom to Houston to pack her clothes, books, and computer files for her move to Dallas for the next several weeks, as well as, tie up some loose ends at her office. We also had a family meeting Saturday with the Brothers and our wonderful sister-in-laws to discuss the logistics of visitation schedules while Mom is here in Dallas and how we will all work together to get Mom back and forth to MD Anderson for chemo treatments once she returns to Houston.
Monday, September 22nd: We took Mom to get her hair done today and it looks really GREAT (which she was super excited about, she will be the best looking lady on the surgery recovery floor for sure)! After a couple days of only ensure and pulp-free juices, she was stocked when I brought home cherry jello and 15 different types of tea from the grocery store. It’s the little things in life.
The resection surgery is scheduled this Friday, September 26th at Plano Presbyterian Hospital (972) 981-8000 at noon. I will make sure updates are provided here as more information becomes available. Elizabeth, Gordon, David and I will be with her during the surgery and Nick, Chris, Sue and Gosia will all be here Friday night.
Much love to every single one of you who have already sent us your positive energy, prayers, warm wishes and continue to show support through all of this. Please feel free to share this with others who might also be interested in staying in the loop.
Monica~
PS. To be notified as updates are available, please select the Subscribe button below.
Due to the size of our family and the tremendous amount of friends who are concerned about her wellbeing, we set up this blog to keep everyone informed and allow people to post comments here (which I will print and read to Mom so she knows what a huge support group she has behind her).
For those who may have missed some of the happenings over the past 2 weeks, here is a quick recap of events:
Friday, September 5th: Mom had a colonoscopy in Houston at Kelsey Sebold Clinic (after much arm twisting and many threats from her wonderful beau Gordon) where they identified a rather large tumor located just past the turn at the top of the rectum where the colon starts. The young doctor who performed the colonoscopy was unable to complete the test as she was afraid to attempt passing the tumor for fear she could puncture the colon wall. SIDE NOTE: If it wasn’t for Gordon we would absolutely not be as far through the process as we are today and from all of Mom’s kids we cannot possibly thank him enough!
Tuesday, September 9th: Gordon again stepped up and drug Mom kicking and screaming to see the Kelsey Sebold Colon Surgeon. Although at this point all we knew was they were recommending surgery to remove the tumor, yet we didn’t have the biopsy results or really any other information yet.
Wednesday, September 10th: The biopsy results were returned positive for rectal cancer. We filed transfer paperwork with MD Anderson (7-10 business day file review process) and scheduled further tests with Kelsey Sebold.
Thursday, September 11th: Mom came to Dallas, not to avoid the hurricane but to allow me to try and speed up the cancer staging testing, as Kelsey Sebold was not providing comprehensive information and we (her kids) did not at all have a comfort level with their abilities to complete the surgery or even the staging tests needed. Plus, due to the hurricane quickly approaching the Texas coastline everything in Houston was coming to a screeching halt.
Friday, September 12th: Hurricane Ike. I took Mom to Presbyterian Hospital of Plano ER to have some tests run (x-ray to check on the blockage in her colon and blood work to make sure all her other organs were working properly) – Doctor Z said that she was the healthiest sick lady he had seen all day, but just in case the hurricane put Houston out of commission for longer than the weekend, he gave us 2 referrals to Colon Surgeons in Dallas.
Tuesday, September 16th: We met with Doctor Julie Leverton (http://www.texascolon.com/leverton.html), she is a Colon and Rectal Surgeon in Plano near where Elizabeth and I live. During our first one hour office visit with Dr. Leverton we learned more about the process and procedures for staging and surgery than Mom had in multiple visits and conversations with Kelsey Sebold in Houston.
Wednesday, September 17th: CT Scan with barium at Centennial Hospital in Frisco (where we live). This test is part of the staging tests to identify if there are tumors or cancer cells present in other organs (Colon and Rectal Cancers typically spread first to liver, lungs, or ovaries). The CT Scan came back “clean” with the exception of 2 small “spots” of concern on the left lung which will need to be monitored and further tested after her surgery, however, at this point Dr. Leverton said these do not appear to be the cancer spreading.
Thursday, September 18th: Second colonoscopy at Plano Baylor to make sure there are no further tumors in the remainder of the colon. Dr. Leverton identified the cancer as a late stage 2 or early stage 3 and that the tumor has created a 98% blockage of the colon. The need for surgery is urgent (meaning we could not wait any longer than 3 weeks) and although chemotherapy will be required, Mom will not have to additionally go through radiation and due to the location of the tumor there will be no colostomy (which is great news).
MD Anderson was unable to even schedule the surgery for 4-5 weeks due to the backlog caused by the Hurricane Ike aftermath, however, we were able to change her Surgery Referral (filed the week before) to a Chemotherapy Referral. The plan will be surgery in Dallas and Chemo in Houston at MD Anderson after recovery (4-6 weeks).
Stage II
In stage II, cancer has spread outside the rectum to nearby tissue, but it has not gone into the lymph nodes.
Stage III
In stage III, cancer has spread to nearby lymph nodes, but it has not spread to other parts of the body.
Friday, September 19th: Elizabeth and I drove Mom to Houston to pack her clothes, books, and computer files for her move to Dallas for the next several weeks, as well as, tie up some loose ends at her office. We also had a family meeting Saturday with the Brothers and our wonderful sister-in-laws to discuss the logistics of visitation schedules while Mom is here in Dallas and how we will all work together to get Mom back and forth to MD Anderson for chemo treatments once she returns to Houston.
Monday, September 22nd: We took Mom to get her hair done today and it looks really GREAT (which she was super excited about, she will be the best looking lady on the surgery recovery floor for sure)! After a couple days of only ensure and pulp-free juices, she was stocked when I brought home cherry jello and 15 different types of tea from the grocery store. It’s the little things in life.
The resection surgery is scheduled this Friday, September 26th at Plano Presbyterian Hospital (972) 981-8000 at noon. I will make sure updates are provided here as more information becomes available. Elizabeth, Gordon, David and I will be with her during the surgery and Nick, Chris, Sue and Gosia will all be here Friday night.
Much love to every single one of you who have already sent us your positive energy, prayers, warm wishes and continue to show support through all of this. Please feel free to share this with others who might also be interested in staying in the loop.
Monica~
PS. To be notified as updates are available, please select the Subscribe button below.
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