I had a rough weekend. Friday night I had Derek take me to the emergency room
because I was having horrible stomach pain and vomiting. They did a CT scan and discovered that I had a bowel obstruction in my small intestine. They called my surgeon and he told them to admit me to the hospital. They gave me pain meds and anti-nausea meds. The surgeon asked that I not have any food and water. The bowel would either clear itself or I would need surgery to remove the blockage. By Sat. morning I felt some what better and they gave me liquids to see if I would start to get symptoms again. Apparently I was able to clear the blockage on my own (Thank God!) and I was released on Sunday morning. I was still in a lot of pain so I took morphine and slept the entire rest of the day. I ate regular food last night and was holding my breath hoping everything would make it through OK. I slept well last night and am feeling a little bit better. The doctor said it will take a few days to recover from this incident.
About Me
- Maggie May
- The purpose of this blog is to document my journey back to health after being diagnozed a third time with cancer. For historical perspective, There are two other blogs that contain my battle with round II of my cancer. They are "I will be cured" and "I will be cured part II" The picture I chose was taken when I went to Mexico to ride young stallions to decide if I wanted to purchase one to bring back to the US. In this picture I am riding a 3 year old barely broke stallion named Capote. He is the one I purchased and imported in the US. I still have hime although I haven't been able to ride him very much.
My Dinner with Ally
I had dinner with Ally tonight and she and I talked about my doing a blog on my battle with round 2 of this cancer. I thought it was a great idea and am now tring to figure out how to get this thing to work. It is easier doing these types of things when you are 20 something rather than 50 something. But I think this could be very cathartic so I am going to perservere....Thanks Ally for the inspiration!!
I cut my hair!
I was told my by oncologist that my hair would fall out this time with the new chemotherapy that I will be given. I thought I would cut my hair before it started falling out so that it wouldn't be as weird and also easier to deal with as I am going through treatment.
Dec. 7, 2007: Installation of "Port a Cath"
I was checked into the hospital yesterday to have a Port a Cath installed in my chest. Apparently the Chemo they are giving me is so caustic that it destroys small veins so they have to use one of your largest veins in the Body (Superior Venacava sp?). They implant a septa into your chest and thread a catheter into your jugular vein and thread it down into the main vein right above your heart. Luckily they do this under “twilight” sleep. Although for some reason I wasn’t going into twilight sleep. The doctor was amazed at the amount of drugs he had to give me to even get me sedated a little bit. Side bar: Did you know that Red heads metabolize drugs faster than most people? There is some sort of genetic link between red hair and drug metabolism….no kidding. I had a very nice male nurse that stayed with me the entire time. He looked just like a young Gabriel Burne (Scottish actor). I woke up this morning with this thing hurting like a MF. Now that the day is over it isn’t as bad. Deep Breath!!!!
Sunday 12/9/07: The battle begins.....
Tomorrow I start Chemo and Radiation. The Doctors will treat me for as long as my body will hold up. They will walk the very fine line between killing the tumor and doing irrevocable damage to my tissues/organs. I trust that they will be successful.
God has directed me to a very good therapist and an amazing local Christian Pastor in San Diego. I spent a lot of time with each of these wonderful people on Friday and Sat. The fear has left me and it has been replaced with a sense of peace and surrender. God has spoken to my Dad and to me that I will be cured and will not die from this most recent “challenge” or “Son of a Bitch” as my Dad calls it! Of course we will all die….but I will not be dying from this. I am so grateful for all of your love and prayers!!!! Please keep them coming.
God has directed me to a very good therapist and an amazing local Christian Pastor in San Diego. I spent a lot of time with each of these wonderful people on Friday and Sat. The fear has left me and it has been replaced with a sense of peace and surrender. God has spoken to my Dad and to me that I will be cured and will not die from this most recent “challenge” or “Son of a Bitch” as my Dad calls it! Of course we will all die….but I will not be dying from this. I am so grateful for all of your love and prayers!!!! Please keep them coming.
Monday 12/10/07: RADIATION DAY 1
Derek and I went together for my first day of radiation treatment. We met with Dr. Hodgens and he explained that he was using 3 posterior fields and was not using the IMRT program. Because it is not IMRT, the sessions are very short 3 minutes compared to 20 minutes last time. Derek thinks Dr. Hodgens could have a better bed side manner as he is quite dour and serious. I have been told by multiple people that he is the best radiation oncologist in SD.
Waiting for the 5FU pump and supplies to show up so the home health nurse can come and hook me up.
Waiting for the 5FU pump and supplies to show up so the home health nurse can come and hook me up.
TUE 12/11/07: CHEMO FOLLOWED BY MORE CHEMO
Homehealth people didn’t get to our house until 11:30 PM last night to hook up the 5FU and pump. Apparently our insurance company wouldn’t let a San Diego home health care company come out. In their infinite “wisdom” the used a home health company located in Louisiana. The pump and chemo had to be flown from LA to SD and with flight delays didn’t arrive until 10:30 PM last night. And we wonder why our insurance costs keep rising……they must be run by a bunch in incompetent idiots. I thought I was going to have stroke last night I was so angry…..Derek told me to take a tranquilizer and he would wake me when they arrived.
I spent the rest of today in the Oncologists office at Scripps Memorial getting 2nd chemo drug Cysplatin (sp?). Nurses were incredibly warm and caring. They pumped me full of anti nausea drugs and I fell asleep in a very comfortable recliner while the Chemo did its thing. When I woke up Derek was there to take me home and I headed upstairs to my office to do a little bit of work. Doc says tomorrow and the next could be bad but try to keep up my anti-nausea meds. So far so good…..
I spent the rest of today in the Oncologists office at Scripps Memorial getting 2nd chemo drug Cysplatin (sp?). Nurses were incredibly warm and caring. They pumped me full of anti nausea drugs and I fell asleep in a very comfortable recliner while the Chemo did its thing. When I woke up Derek was there to take me home and I headed upstairs to my office to do a little bit of work. Doc says tomorrow and the next could be bad but try to keep up my anti-nausea meds. So far so good…..
Wed. 12/12/07
YUCK!!!! I want to cry and feel sorry for myself. I drove myself to radiation today...big mistake. I should have asked for Derek's help as he offered to drive. I worry because he just started a new job and he has already taken a lot of time off.
I called the oncology nurse and she said the nausea should peak about 24 hours after initial treatment. I am going to go to bed and try and sleep.
I called the oncology nurse and she said the nausea should peak about 24 hours after initial treatment. I am going to go to bed and try and sleep.
12/13/07
Hanging in there hoping this will pass. Extremely nauseated and exhausted. It is like my body remembers the assault from last time and seems to have just rolled over and accepted the sickness. Last time I had a few weeks before it got this bad. It could be the fact that I am on a more brutal chemo drug. Trying to stay positive....
12/16/07
5FU pump came off this morning. It is good not to be hooked up to that machine anymore. I am extremely nauseated and extremely fatigued. Derek is taking me to the oncologist tomorrow to see if they can do anything more to help this. I can't seem to eat and the Doctors threaten to put me in the hospital if I loose too much weight. I am trying to find my "happy place"...but it is eluding me.
12/19/07: Turned a corner
I wanted to let everyone know that I am feeling a bit better. Derek took me to the oncologist to get IV fluids and anti nausea drugs. They also were able to prescribe some different nausea meds. I am not sure if the meds are working or if I am just recovering from the chemo. What ever the reason....I am grateful.
Thanks to everyone for your cards, calls, gifts, emails, and prayers. I apologize for not responding but I want you to know how much I appreciate your love and support.
Thanks to everyone for your cards, calls, gifts, emails, and prayers. I apologize for not responding but I want you to know how much I appreciate your love and support.
Friday 12/21/07
I have been up dressed and out of bed the entire morning. I had a radiation treatment this morning and don't have another one until next Wed....as the radiation center is closed until then. Apparently Cancer doesn't grow or need treatment during the Christmas Holidays.
According to Derek's calculations, I am half way through my treatment. We meet next week with the Doctors to do some more tests to determine if I am to go through the next round of Chemo. I am not clear on what their criteria are for going with round II or not. I will try and get clarification next Wed.
I can't believe Christmas is next Tue. I feel like I have been in a time warp since this all happened. We were planning on having a big Christmas get together this year. That is being put on hold until I am well. My daughter Amy is going to come on Christmas Day and will stay with me until her new semester starts in late Jan. I am really looking forward to seeing her.
According to Derek's calculations, I am half way through my treatment. We meet next week with the Doctors to do some more tests to determine if I am to go through the next round of Chemo. I am not clear on what their criteria are for going with round II or not. I will try and get clarification next Wed.
I can't believe Christmas is next Tue. I feel like I have been in a time warp since this all happened. We were planning on having a big Christmas get together this year. That is being put on hold until I am well. My daughter Amy is going to come on Christmas Day and will stay with me until her new semester starts in late Jan. I am really looking forward to seeing her.
Christmas Day
MERRY CHRISTMAS!! Beautiful San Diego clear crisp day. Amy arrived this morning and it was great to see her. We had a great Christmas dinner made up of stuff from the Honey Baked Ham Company as well as some homemade side dishes. I had a HUGE appetite and everything tasted so good. The Carrot cake was especially good….lots of frosting!!!
Amy, Derek and I watched some episodes of the Show Time series “Dexter”. Amy has got us hooked on this series and Derek was able to down load season II from the computer and play it on the new TV.
Even though I told Derek not to get me anything for Christmas, I awoke to find a little gift by my night stand. He got me a bunch of DVDs showing the various Olympic Dressage horses and their riders as well as some instructional DVDs on the art of riding dressage. He seems very sure that I am going to be able to ride my horses at the level I used to. I am hoping he is right!
Amy, Derek and I watched some episodes of the Show Time series “Dexter”. Amy has got us hooked on this series and Derek was able to down load season II from the computer and play it on the new TV.
Even though I told Derek not to get me anything for Christmas, I awoke to find a little gift by my night stand. He got me a bunch of DVDs showing the various Olympic Dressage horses and their riders as well as some instructional DVDs on the art of riding dressage. He seems very sure that I am going to be able to ride my horses at the level I used to. I am hoping he is right!
Wed Dec. 26th.
I feel better than ever today. For the first time since this all started, I actually wanted to get out of bed this morning rather than just dragging myself out of bed. Derek, Amy and I met with Dr. Banerjee my oncologist today to talk about how we are going to proceed with my treatment. Dr. Banerjee says the medicinal effect of a second round of chemo would not be enough to warrant the harm it would do to my body so he has decided he will probably not do round II. He says because I did so poorly the first time a second round would put me in the hospital. This coincides with what my “gut” was telling me about doing round II. I told Dr. Banerjee if he could guarantee that I would have a better chance of being healthy going through round II…then I would do it without question. The Dr. says the literature just doesn’t bare that out and besides we can always decide to do another round later. We are going to continue with the radiation for 3 more weeks and then do a CT scan and decide the next step.
I have had the feeling that they are “flying by the seat of their pants” on my treatment. However Amy pointed out that she feels it is more personalized medicine than the last time where they did everything by recipe. I guess that is a good way to look at this.
I have had the feeling that they are “flying by the seat of their pants” on my treatment. However Amy pointed out that she feels it is more personalized medicine than the last time where they did everything by recipe. I guess that is a good way to look at this.
Happy New Year
Happy New Year! I have had 3 days off of radiation for the New Years Break. I am feeling better and my appetite is very good.
My Dr. (Palefsky) up at UCSF Cancer center conferred with my oncologist in San Diego (Dr. Bennerjee) and he does not agree with the revised treatment plan. Dr. Palefsky and his oncologist believe I should go with round II of chemo. I am trying to get in touch with the oncologist at UCSF to get more information. But with the long weekend we have not been able to get in touch.
What is a little bit more disturbing is that I thought my radiation oncologist (Hodgins) agreed with Dr. Bennerjee about round II of chemo. Both Amy and Derek who were with me during my meeting said I misinterpreted his reaction. They both think he didn’t agree and was going along with me because he thought that is what I wanted. I am meeting with Hodgins tomorrow so I need to be have a “come to Jesus” meeting with him to let him know that we are going to do what is best for my long term health not what is best for me short term. Again it is difficult when there isn’t really a plan and we have to keep making adjustmwnts as we go.
I hopefully will have another update tomorrow.
My Dr. (Palefsky) up at UCSF Cancer center conferred with my oncologist in San Diego (Dr. Bennerjee) and he does not agree with the revised treatment plan. Dr. Palefsky and his oncologist believe I should go with round II of chemo. I am trying to get in touch with the oncologist at UCSF to get more information. But with the long weekend we have not been able to get in touch.
What is a little bit more disturbing is that I thought my radiation oncologist (Hodgins) agreed with Dr. Bennerjee about round II of chemo. Both Amy and Derek who were with me during my meeting said I misinterpreted his reaction. They both think he didn’t agree and was going along with me because he thought that is what I wanted. I am meeting with Hodgins tomorrow so I need to be have a “come to Jesus” meeting with him to let him know that we are going to do what is best for my long term health not what is best for me short term. Again it is difficult when there isn’t really a plan and we have to keep making adjustmwnts as we go.
I hopefully will have another update tomorrow.
Wednesday 1/2/08
We spoke with Dr. Hodgins and Dr. Banerjee today about round II of chemo. Dr. Hodgins did a physical exam today and it appears the chemo/radiation has shrunken the tumor although it was hard to tell. He decided to a CAT scan tomorrow so we will know exactly what is happening with the tumor. Dr. Hodgins said he agreed with Dr. Banerjee that round II probably isn't as important as the first round.
We spoke with Dr. Banerjee and I asked him if this was your daughter what would you do. He avoided the question and I kept asking it and he refused to answer it. He says that I need to decide what I want to do and he will do it. He says that he can get me through round II without any kidney or liver damage (he is sure of that). He just says that I will be much more miserable than last time but he will infuse me with antinausea drugs and fluids each day and that should help a lot. Both Derek and Amy say if this was happening to them they would go through round II of Chemo. I am leaning that way as well. I need to make a decision by the end of the day tomorrow.
Meanwhile Derek is trying to get a hold of Dr. Ko the oncologist at UCSF who recommended round II of chemo. So far he hasn’t heard back from him.
We spoke with Dr. Banerjee and I asked him if this was your daughter what would you do. He avoided the question and I kept asking it and he refused to answer it. He says that I need to decide what I want to do and he will do it. He says that he can get me through round II without any kidney or liver damage (he is sure of that). He just says that I will be much more miserable than last time but he will infuse me with antinausea drugs and fluids each day and that should help a lot. Both Derek and Amy say if this was happening to them they would go through round II of Chemo. I am leaning that way as well. I need to make a decision by the end of the day tomorrow.
Meanwhile Derek is trying to get a hold of Dr. Ko the oncologist at UCSF who recommended round II of chemo. So far he hasn’t heard back from him.
Thursday Jan 3rd
I had a CT Scan today and the doctor just called me with the results. He said the tumor had shrunk by 30 to 40% which is in keeping with their expectations. So I am happy that this treatment is working. Derek heard back from Dr. Ko at UCSF Cancer Center and he recommended a second dose of Chemo II for a reoccurrence. I have thought a lot about this is the last 24hours and have decided to go forward with round II of chemo. When all is said and done, I want to know that I have done everything possible to get rid of this disease and to make sure I am never facing this again.
They are still assuming that I will have surgery once I recover from the round II of chemo. I am keeping that open depending upon the CT scan results when this is over. There may be no tumor left to operate on. At that point, I will need to decide to go forward removing cancer free tissue as a preventative measure to make sure this doesn’t happen again. I am not sure what I would decide to do. But I don’t have to make that decision right now and just have to get through the next 2 weeks.
They are still assuming that I will have surgery once I recover from the round II of chemo. I am keeping that open depending upon the CT scan results when this is over. There may be no tumor left to operate on. At that point, I will need to decide to go forward removing cancer free tissue as a preventative measure to make sure this doesn’t happen again. I am not sure what I would decide to do. But I don’t have to make that decision right now and just have to get through the next 2 weeks.
Friday January 4th
Today my Dad turns 82. Happy Birthday Dad!! He sends me cards every day and calls me every night to see how I am doing. Both my Dad and step Mom Barbara were former scientists so they are a great resource to bounce my health questions off of. Both Dad and Barbara have been on the intranet checking out information on chemo drugs, treatments and Dr. References. I am so lucky to have them both.
Amy made a Cherry Pie yesterday that was so good. She used sour cherries and made kind of a sugar topping. I got up in the middle of the night to get a drink of water and ended up having a second piece of pie. I have been gaining weight the last week so all the Doctors are very happy and Derek isn’t bugging me every half hour to eat. I am trying to eat as much as possible as I know once Chemo starts I will have a struggle to keep weight on.
Dr. Ko the oncologist from UCSF called me last night and we spoke in person. He was a REALLY nice guy. We talked at length about my diagnosis and his recommendation for a second round of chemo. Like all of the Doctors I have spoken with they have never seen a reoccurrence like mine. He feels that fact that the cancer came back in a different place is good because is allows me to have radiation as well as chemo. He recommends that I not even consider surgery for at least 2 months after chemo and radiation is over. He says the tumor continues to shrink for a couple of months after radiation and there is a chance I won’t need the final surgery. He offered to see me once I am done with radiation to give his opinion.
BTW: My hair is starting to fall out….YUCK!!
Amy made a Cherry Pie yesterday that was so good. She used sour cherries and made kind of a sugar topping. I got up in the middle of the night to get a drink of water and ended up having a second piece of pie. I have been gaining weight the last week so all the Doctors are very happy and Derek isn’t bugging me every half hour to eat. I am trying to eat as much as possible as I know once Chemo starts I will have a struggle to keep weight on.
Dr. Ko the oncologist from UCSF called me last night and we spoke in person. He was a REALLY nice guy. We talked at length about my diagnosis and his recommendation for a second round of chemo. Like all of the Doctors I have spoken with they have never seen a reoccurrence like mine. He feels that fact that the cancer came back in a different place is good because is allows me to have radiation as well as chemo. He recommends that I not even consider surgery for at least 2 months after chemo and radiation is over. He says the tumor continues to shrink for a couple of months after radiation and there is a chance I won’t need the final surgery. He offered to see me once I am done with radiation to give his opinion.
BTW: My hair is starting to fall out….YUCK!!
Monday Jan 7th: Round II of Chemo Starts
Amy and I met with the nurse practitioner today to put together a drug strategy to deal with the pain and nausea. We wanted to find out which drugs I could take together without having to worry about interaction or overdose. I will be taking about 8 to 10 drugs per day to deal with the side effects of this treatment. I will be relying on a new drug called Cesemet to deal with the extreme nausea. It is a synthetic version of marijuana so I am hopeful that it will be effective.
The 5 FU and pump were plugged into my Metaport by a Home health nurse at 4:00 this afternoon. I am now tethered to this thing until 4:00 PM on Sat. morning. Cysplatin infusion tomorrow at 11:00 AM.
The 5 FU and pump were plugged into my Metaport by a Home health nurse at 4:00 this afternoon. I am now tethered to this thing until 4:00 PM on Sat. morning. Cysplatin infusion tomorrow at 11:00 AM.
Tues 1/8/08
I had radiation at 10:45 AM and then Amy drove me to oncologist office to have infusion of my second chemotherapy drug Cysplatin. Unlike the 5FU (which continually pumps for 5 days) this is a one time dose. First the nurses give me via IV a large bag of fluids and antinausea drugs followed by the Cysplatin. This entire process takes about 3 hours. Amy didn’t stay and went back home to walk the dogs and do some shopping.
I came back home and tried to watch a movie with Amy but fell asleep. I was able to get up and come down stairs and eat a little bit dinner and watch a movie with Amy
I came back home and tried to watch a movie with Amy but fell asleep. I was able to get up and come down stairs and eat a little bit dinner and watch a movie with Amy
Thurs. Jan 10, 2008
I woke up this morning feeling very weak. The weakness has progressed the rest of the day. I am keeping myself very drugged on pain killers and antinausea and it seems to be helping a lot. It is hard to drink and eat but I keep reminding myself that it is very important. This time last treatment the nausea started to get really bad…I am keeping my fingers crossed that the Cesemet will work.
Friday Jan 11th
Amy took me to get antinausea and IV fluids from the oncology nurses today. That took about 2 hours and will hopefully allow me to make it through the weekend at home rather than the hospital. I am determined to not end up in the hospital. Those antibiotic resistant microbes scare the hell out of me. After watching what both Tim’s from work went through with their staff infections, I would rather avoid pitfall
Sun. 1/13/08
As I suspected, the weekend is proving a challenge. Very nauseated, dizzy and fatigued. I tried to come down the stairs and nearly passed out on the stairs. It wouldn’t do for me to break by neck falling down the stairs. Derek and Amy spend the rest of the weekend running up and down the stairs bringing me food, water, pills, love….attention (they are the best!) I am taking a lot of drugs but they are managing the symptoms and keeping me from being completely incapacitated.
CELLEBRATION!
Last day of treatment today! It was difficult to get in the car this morning and make the drive to Scripts. I am glad this is the last day. My Doctor warned me that just because the treatment stops doesn’t mean the healing begins. Even for as much as 1 to 2 months after the finishing the treatment the cancer continues to die. He said I should start to notice an increase in energy and appetite in 2 weeks but don’t get disappointed it takes longer. He says get as must rest as possible and to heal myself.
Sunday:
I just got out of the hospital today and I can’t tell you how nice it is to lay in bed and watch the rain storms as they move in and out of the Canyon. I am so happy to be out of the smells and sounds of the hospital and to feel peaceful grateful for being alive
There is so much detail to wade through about what went on the last week that I am only now coming up to speed as Derek fills me in. Apparently my kidneys shut down after the second round of chemo. That combined with a very intense narcotic therapy had me hallucinating and making quite an impression on everyone caring for me. I guess the fact that it took 3 people to hold me down and a 4th to subdue me means that I am quite the fighter. It was good to be reminded that I am one tough chick and my will to get through and survive this is strong.
My daughter went home on Friday. My Dad and Step Mom drove in from Sedona and are going to stay for a few weeks to make sure I am back on my feet. Barbara is a good cook. It will be very healing to eat her food for the next few weeks as I get my strength back.
Thanks for all your love and support. My Dad sat by my bed last night and read many of the cards and letters you have been sending. Thank you so much for keeping me in your prayers and thoughts.
There is so much detail to wade through about what went on the last week that I am only now coming up to speed as Derek fills me in. Apparently my kidneys shut down after the second round of chemo. That combined with a very intense narcotic therapy had me hallucinating and making quite an impression on everyone caring for me. I guess the fact that it took 3 people to hold me down and a 4th to subdue me means that I am quite the fighter. It was good to be reminded that I am one tough chick and my will to get through and survive this is strong.
My daughter went home on Friday. My Dad and Step Mom drove in from Sedona and are going to stay for a few weeks to make sure I am back on my feet. Barbara is a good cook. It will be very healing to eat her food for the next few weeks as I get my strength back.
Thanks for all your love and support. My Dad sat by my bed last night and read many of the cards and letters you have been sending. Thank you so much for keeping me in your prayers and thoughts.
Thursday 2/7/08
Sorry for the delay in writing in my blog. I have still been pretty out of it but realize that I need to keep people apprised of what is going on with my recovery and they worry if there has been nothing on my blog for a few weeks.
My recovery is very slow and almost seems to remain the same day to day. I have to remind myself that I was very ill and that it is going to take time to recover. My Dad and Barbara left over the weekend and I miss all the good food that Barbara was cooking for me.
I met with the surgeon yesterday and he wants to go forward with surgery to remove my lower bowel at the end of Feb. He says there is a Window of Opportunity in which to do surgery after chemo/radiation. If you wait too long, the irradiated tissues start to get fibrotic and difficult to work with. I feel like I had forgotten about having to have surgery before I am even recovered from chemotherapy and radiation. I feel depressed at the thought of having to go through more sh%^t. I am tired of sh%^t!
Derek and I are going to seek a second opinion at USCF. We are hoping that Dr. Ko can see us by the end of the month. I guess we will fly up in the morning and fly back in the late afternoon. I have a CT Scan next week and a colonoscopy the following week so they should know if the tumor is still there or if it has completely disappeared. I guess I am hoping that someone will recommend that I not go forward with the final surgery….it may just be wishful thinking but we will see
My recovery is very slow and almost seems to remain the same day to day. I have to remind myself that I was very ill and that it is going to take time to recover. My Dad and Barbara left over the weekend and I miss all the good food that Barbara was cooking for me.
I met with the surgeon yesterday and he wants to go forward with surgery to remove my lower bowel at the end of Feb. He says there is a Window of Opportunity in which to do surgery after chemo/radiation. If you wait too long, the irradiated tissues start to get fibrotic and difficult to work with. I feel like I had forgotten about having to have surgery before I am even recovered from chemotherapy and radiation. I feel depressed at the thought of having to go through more sh%^t. I am tired of sh%^t!
Derek and I are going to seek a second opinion at USCF. We are hoping that Dr. Ko can see us by the end of the month. I guess we will fly up in the morning and fly back in the late afternoon. I have a CT Scan next week and a colonoscopy the following week so they should know if the tumor is still there or if it has completely disappeared. I guess I am hoping that someone will recommend that I not go forward with the final surgery….it may just be wishful thinking but we will see
Monday Feb 11, 2008
I woke up at 6:30 AM this morning feeling different. It felt like the haze of sickness was starting to lift. I didn’t wake up in intense pain and dreading starting my day. My pain had lessened quite a bit. I am not sure if it is the new pain killers I am taking or if I am simply healing. I have been a bit frustrated with the amount of time it is taking to start feeling better. I have to remind myself that recovery from Chemo and Radiation takes a lot of time and I need to try and be patient and have faith that I will recover.
My boss Lou Latino is on the West Coast this week. He is coming by tonight to visit Derek and me. I am really looking forward to seeing him and catching up on what is going on a work and with Lou and the rest of the team.
My boss Lou Latino is on the West Coast this week. He is coming by tonight to visit Derek and me. I am really looking forward to seeing him and catching up on what is going on a work and with Lou and the rest of the team.
Happy Valentines Day!
I had a couple of bad days after my good day on Monday. Derek keeps reminding me not to get depressed and that it is going to be 1 step forward, 2 steps backward for a while. Today I did feel better. We tried some stronger pain meds last night and it really helped with the pain. I am trying to go downstairs 3 or 4 times per day and not let Derek wait on me so much. I am still spending the majority of my time in bed. Thank goodness I have a great big beautiful view the entire wall of my bedroom. I can watch the hawks fly over the canyon and the hot air balloons which are so colorful and picturesque.
A good friend of mine Robin stopped by to visit today. It was so good to see her and to laugh and talk about all sorts of fun things. I haven’t been having many visitors because I have been so sick so it is very special to have someone visit.
My son Richard is coming to see me next week if we can coordinate our schedules. I haven’t seen Rich since August so it will be great to see him. Richard is going to bring his guitar down and sit by my bed and play and sing for me. Rich is an incredible musician and I could sit all day and listen to him play. He writes some of his own songs that are really good. He just broke up with a girlfriend of over a year so perhaps he has written some good break up songs.
I have my CT scan tomorrow at 10:30 AM. I am nervous to get the results to see if the tumor has been completely destroyed or if a portion still remains. The results of this test will impact my decision on whether or not to have the “final” surgery. Derek ran across a paper that talked about my type of cancer and the fact that they have developed a biological marker for the antigen to the cancer. The work was done in Texas and we are trying to get more information. This is a very interesting bit of information. If they truly have a good marker for this type of cancer then I would feel more comfortable with foregoing the surgery and simply monitoring me for marker to know if the cancer has returned.
A good friend of mine Robin stopped by to visit today. It was so good to see her and to laugh and talk about all sorts of fun things. I haven’t been having many visitors because I have been so sick so it is very special to have someone visit.
My son Richard is coming to see me next week if we can coordinate our schedules. I haven’t seen Rich since August so it will be great to see him. Richard is going to bring his guitar down and sit by my bed and play and sing for me. Rich is an incredible musician and I could sit all day and listen to him play. He writes some of his own songs that are really good. He just broke up with a girlfriend of over a year so perhaps he has written some good break up songs.
I have my CT scan tomorrow at 10:30 AM. I am nervous to get the results to see if the tumor has been completely destroyed or if a portion still remains. The results of this test will impact my decision on whether or not to have the “final” surgery. Derek ran across a paper that talked about my type of cancer and the fact that they have developed a biological marker for the antigen to the cancer. The work was done in Texas and we are trying to get more information. This is a very interesting bit of information. If they truly have a good marker for this type of cancer then I would feel more comfortable with foregoing the surgery and simply monitoring me for marker to know if the cancer has returned.
Friday 2/15/07
I had my PET SCAN this morning. I get so nauseous some times that I start vomiting. I always pray this doesn’t happen in the car or in the Doctor’s office. Well unfortunately today I got sick in the car and at the imaging center. They had to get wheel chair because I was too weak to walk. Poor Derek was really worried about me. The radiation technologists were really nice to me and very sympathetic. I was supposed to drink a liter of contrast agent. I knew that if I drank any contrast agent it wouldn’t stay down. The technologist said I didn't have to drink the conrast agent. They still gave me the radioactive labeled glucose by IV but that wasn’t a problem because I didn’t have to swallow it. The Scan took ½ hour and I was so paranoid that I was going to vomit and ruin the scan as you are not supposed to move. Luckily I was able to practice some deep breathing and it took my mind off of my stomach.
Surprisingly enough I was starved after the whole ordeal and Derek bought me a sandwich and some chips which I ate like a starving person.
Dr. Worsey my surgeon will be reading the Scan today and will confer with some of his colleagues at the Cleveland Clinic on the best course of action to take. I probably won’t know the results until next week. Dr. Worsey is taking off a long weekend for President’s Day. Meanwhile Derek and I are seeking the second opinion at UCSF. I need to call and make that appointment today
Surprisingly enough I was starved after the whole ordeal and Derek bought me a sandwich and some chips which I ate like a starving person.
Dr. Worsey my surgeon will be reading the Scan today and will confer with some of his colleagues at the Cleveland Clinic on the best course of action to take. I probably won’t know the results until next week. Dr. Worsey is taking off a long weekend for President’s Day. Meanwhile Derek and I are seeking the second opinion at UCSF. I need to call and make that appointment today
Sat. 2/16/08
Today is Sat. and my friend Ally stopped by to pick up my dressage saddle and bridle. My dear horse Monique has been recovering the last 2 years from an injury to both front feet. I was supposed to start riding Mo again in Feb to start her second physical rehab. She went lame again last summer after the first round of rehab. Ally is also going through her own rehab after having back surgery early last summer. Ally loves to ride and is a great rider. The Doctor told her she is ready to start riding again. So both Mo and Ally will be able to do their rehab together. When Ally left my house today she said she would take lots of pictures and email them to me. I told her I am going to be living vicariously through her as she starts riding my horse.
Women and Weight
It is very weird to have no appetite and to have my doctors and loved ones constantly bugging me to eat. That has never been a problem in the past as anyone who knows me well knows that I love to cook and love to eat.
I never lost the last 15 pounds of pregnancy weight after giving birth to my son…..and that was 25 YEARS AGO!!! Add to that the one or two pounds you gain every year if you are not careful. Like most women I was always trying to loose a few pounds and getting frustrated when it didn’t happen as easily as when I was in my twenties.
My Daughter Amy made an interesting observation when she was taking care of me a few weeks ago. She was shocked at the amount of weight I had lost in only 2 months and how boney and frail I felt when she hugged me. She said, “Mom I am so grateful that you were a size 10 and not a size 4 when you started this treatment.” She pointed out that a thin person would have a real disadvantage going through this treatment because they wouldn’t have any stored fat to draw upon and would be more likely to get even sicker. I had never considered the advantage of carrying around a few extra pounds but in this case I think her observation is valid. So Ladies....sometimes that extra 15 or 20 pounds can be a real life saver.
I never lost the last 15 pounds of pregnancy weight after giving birth to my son…..and that was 25 YEARS AGO!!! Add to that the one or two pounds you gain every year if you are not careful. Like most women I was always trying to loose a few pounds and getting frustrated when it didn’t happen as easily as when I was in my twenties.
My Daughter Amy made an interesting observation when she was taking care of me a few weeks ago. She was shocked at the amount of weight I had lost in only 2 months and how boney and frail I felt when she hugged me. She said, “Mom I am so grateful that you were a size 10 and not a size 4 when you started this treatment.” She pointed out that a thin person would have a real disadvantage going through this treatment because they wouldn’t have any stored fat to draw upon and would be more likely to get even sicker. I had never considered the advantage of carrying around a few extra pounds but in this case I think her observation is valid. So Ladies....sometimes that extra 15 or 20 pounds can be a real life saver.
Wed. 2/20/08: BAD NEWS
Bad News
I heard from my surgeon on the results of the PET scan. The tumor has shrunk by about 50% but it is still there. I was so disappointed to learn that the tumor was still there after the chemo and radiation I have endured the last 2 months. He wants to do surgery the first week of March. I asked does this mean the tumor is now operable? He said he won’t know until he looks at my insides. I asked about prognosis and he said again he won’t know until he is in the operating room. This wasn’t what I wanted to hear. I am terrified of the surgery and my surgeon said and I quote “You have every reason to be afraid the surgery it is very serious and difficult. Again not what I wanted to hear. I really want to hear some GOOD NEWS!!!! I talked with Derek and he said Margaret the 5 year survival rate for a reoccurrence is about 50%. Perhaps I have been minimizing how serious this is. I don’t want to think I only have a 50% chance of living another 5 years. So I have been crying my eyes out for the last hour and a half. I don’t want to die from this cancer. I feel like I have so much to live for.
I had scheduled my second opinion at UCSF for next Wed. but am probably going to cancel my appointment. Now that I know the tumor is still there the decision has been made for me. I need to have the surgery and there is no question any longer if it is the correct thing to do.
On a happy note: my son Rich is coming for a visit this weekend. I am really looking forward to seeing him. I am noticing an improvement in how I am feeling. I was able to eat a lot today and I did some laundry. I want to spend as much time as possible with Rich as he is only able to stay until Wed. the 27th.
I heard from my surgeon on the results of the PET scan. The tumor has shrunk by about 50% but it is still there. I was so disappointed to learn that the tumor was still there after the chemo and radiation I have endured the last 2 months. He wants to do surgery the first week of March. I asked does this mean the tumor is now operable? He said he won’t know until he looks at my insides. I asked about prognosis and he said again he won’t know until he is in the operating room. This wasn’t what I wanted to hear. I am terrified of the surgery and my surgeon said and I quote “You have every reason to be afraid the surgery it is very serious and difficult. Again not what I wanted to hear. I really want to hear some GOOD NEWS!!!! I talked with Derek and he said Margaret the 5 year survival rate for a reoccurrence is about 50%. Perhaps I have been minimizing how serious this is. I don’t want to think I only have a 50% chance of living another 5 years. So I have been crying my eyes out for the last hour and a half. I don’t want to die from this cancer. I feel like I have so much to live for.
I had scheduled my second opinion at UCSF for next Wed. but am probably going to cancel my appointment. Now that I know the tumor is still there the decision has been made for me. I need to have the surgery and there is no question any longer if it is the correct thing to do.
On a happy note: my son Rich is coming for a visit this weekend. I am really looking forward to seeing him. I am noticing an improvement in how I am feeling. I was able to eat a lot today and I did some laundry. I want to spend as much time as possible with Rich as he is only able to stay until Wed. the 27th.
Friday 2/22/08
I am back with a better attitude then when I last wrote. Derek has talked me into going up to UCSF next Wed. to get a second opinion of another oncologist Dr. Andrew Ko. Dr. Ko thinks that the tumor will continue to shrink and that everything is progressing just fine. He does not recommend surgery (at least at this point).
I am dreading having to spend 12 hours on Wed. to make this trip. Especially when I have been feeling so poorly and have had a lot of problems with nausea and vomiting. My worst nightmare is sitting next to someone on a plane that is throwing up. I don’t want to be that nightmare!!! My San Diego oncologist has prescribed some super duper anti-nausea drug for me to take the day of our trip. I really hope it works.
I am seeing the same therapist I saw right before this all started. I have an appointment on Monday at 1:00. My goal is to have him assist with some guided imagery to help with healing from the surgery (at this point I believe this is what I will end of doing). I used this last time and I think it really helped with my attitude and with feeling empowered to help my body heal.
I am dreading having to spend 12 hours on Wed. to make this trip. Especially when I have been feeling so poorly and have had a lot of problems with nausea and vomiting. My worst nightmare is sitting next to someone on a plane that is throwing up. I don’t want to be that nightmare!!! My San Diego oncologist has prescribed some super duper anti-nausea drug for me to take the day of our trip. I really hope it works.
I am seeing the same therapist I saw right before this all started. I have an appointment on Monday at 1:00. My goal is to have him assist with some guided imagery to help with healing from the surgery (at this point I believe this is what I will end of doing). I used this last time and I think it really helped with my attitude and with feeling empowered to help my body heal.
Monday 2/25/08
I wanted to talk about some positive stuff this bog entry rather than dwell on any negative stuff. I have had a couple of visitors that have been really fun. Shika (a friend and colleague from work) stopped by last week. It was great to see her and catch up. She brought over some beautiful roses, dessert and a very cute book. My dog Fergus was completely enamored with Shikha and it was all I could do to keep him from jumping in her lap. I am betting Shikha left here feeling very happy she has her little dog Chip rather than an obnoxious monster like Fergus.
My Son Rich arrived on Saturday afternoon. It is so great to see him! Luckily his visit coincided with my feeling better so I have been able to spend more time out of bed. He has been driving me to my Doctors appointments as I still am unable to drive. Of course he brought his guitar and has been playing and singing for me. He had me laughing my head off when he sang me the song he wrote for his friend Alex’s 21st birthday. The lyrics were hilarious. Rich has been catering manager for Whole Foods in Campbell, CA for the last year or so. I had heard he was a great cook but never had an occasion to taste any of his food. Tonight he decided to cook for Derek and me. He made this incredible TriTip Beef, curried carrots and potatoes. Then he cleaned up the dishes!! I think Derek and I could get used to this.
I went out to dinner last night for the first time in 3 months. Rich and I decided that Thai food sounded good so we went to Spices. Rich ordered a Halibut dish. When the waiter asked him on a scale of 1 to 10 (10 being the most spicy) how hot do you want this? Rich said he wanted it a 10. I was incredulous. I said “white boys can’t eat food that spicy!! The Thai waiter agreed with me. Richard was not deterred. When they brought his food, I noticed all the wait staff in the restaurant was watching our table to see his reaction. He ate the entire fish without batting an eye. He ate it just like it was something as bland as Macaroni and Cheese.
Ally also stopped by on Sat. and hung out with Rich and me. We talked and laughed for several hours. Rich is 25 and Ally is 24 so they are contemporaries. I felt my age several times that afternoon because I didn’t know some of the stuff they were talking about. It didn’t really bother me ….. it is more of an observation than anything else.
I also had a very uplifting phone conversation with Pat a friend of mine from N. Calif. She is one of the few friends of mine that has also battled cancer. She was very supportive of my getting a second opinion. She related some of the experiences she had with her Doctors and with Chemo and radiation that were very helpful She is a very strong woman and was my role model for going through my treatment the first time. It was great to connect her.
My Son Rich arrived on Saturday afternoon. It is so great to see him! Luckily his visit coincided with my feeling better so I have been able to spend more time out of bed. He has been driving me to my Doctors appointments as I still am unable to drive. Of course he brought his guitar and has been playing and singing for me. He had me laughing my head off when he sang me the song he wrote for his friend Alex’s 21st birthday. The lyrics were hilarious. Rich has been catering manager for Whole Foods in Campbell, CA for the last year or so. I had heard he was a great cook but never had an occasion to taste any of his food. Tonight he decided to cook for Derek and me. He made this incredible TriTip Beef, curried carrots and potatoes. Then he cleaned up the dishes!! I think Derek and I could get used to this.
I went out to dinner last night for the first time in 3 months. Rich and I decided that Thai food sounded good so we went to Spices. Rich ordered a Halibut dish. When the waiter asked him on a scale of 1 to 10 (10 being the most spicy) how hot do you want this? Rich said he wanted it a 10. I was incredulous. I said “white boys can’t eat food that spicy!! The Thai waiter agreed with me. Richard was not deterred. When they brought his food, I noticed all the wait staff in the restaurant was watching our table to see his reaction. He ate the entire fish without batting an eye. He ate it just like it was something as bland as Macaroni and Cheese.
Ally also stopped by on Sat. and hung out with Rich and me. We talked and laughed for several hours. Rich is 25 and Ally is 24 so they are contemporaries. I felt my age several times that afternoon because I didn’t know some of the stuff they were talking about. It didn’t really bother me ….. it is more of an observation than anything else.
I also had a very uplifting phone conversation with Pat a friend of mine from N. Calif. She is one of the few friends of mine that has also battled cancer. She was very supportive of my getting a second opinion. She related some of the experiences she had with her Doctors and with Chemo and radiation that were very helpful She is a very strong woman and was my role model for going through my treatment the first time. It was great to connect her.
Tues 2/26/08
Derek and I are heading up to UCSF tomorrow for 2nd opinion. Richard will be going with us to the airport and heading back to his home in San Jose. I will miss him so much. We have had such a great visit.
I have all my medical records and pathology slides (Gee I hope you can carry glass slides on a plane?). Amy will be meeting Derek and me at the airport and will drive us to my appointment with Dr. Ko. I hope I have all the information he needs. I have all my PET scans on a CD. Scripts claims the CD will download the software to allow Dr. Ko to read the scans.
I did a little bit too much yesterday so I paying the price today. I have been taking my super anti-nausea drugs. They are not working so well today….. I really hope they work tomorrow
I have all my medical records and pathology slides (Gee I hope you can carry glass slides on a plane?). Amy will be meeting Derek and me at the airport and will drive us to my appointment with Dr. Ko. I hope I have all the information he needs. I have all my PET scans on a CD. Scripts claims the CD will download the software to allow Dr. Ko to read the scans.
I did a little bit too much yesterday so I paying the price today. I have been taking my super anti-nausea drugs. They are not working so well today….. I really hope they work tomorrow
2/27/07 Visit to UCSF Cancer Center for 2nd opinion
Derek, Amy and I met with Dr. Ko at UCSF Cancer Center yesterday. Amy and I were very impressed with him (I think Derek was too…but he didn’t verbalize it). The Dr. was kind, explained things very well and seemed very up to date on the various treatments for colorectal cancers (plus he had a very impressive C.V.). He looked at my PET Scans and all the data on my first and second diagnosis and treatment. He said that my response to the chemo and radiation was great! He said that he didn’t expect the tumor to be completely gone at this point in treatment. He said it will continue to shrink for up to 6 months after treatment stops. He was very positive about my response to treatment and thought that I should wait 6 months before making the decision to have surgery. Dr. Ko said that we will do a PET scan in 6 weeks to see if the tumor continues to shrink and then continue PET scans every 6 weeks until 6 months time. We put a stake in the ground at 6 months. If the tumor isn’t gone in 6 months time, then we do the surgery. We asked about the window of opportunity to do surgery on radiated tissues. If you remember, my surgeon Dr. Worsey said I must have surgery right away because it would be difficult to do the surgery as I started to heal and scar internally from the radiation. Dr. Ko picked up the phone and called the head of colorectal surgery at UCSF (can’t remember his name). They talked about my case and the head of surgery said he didn’t agree that there was only a small window of opportunity for surgery. He says often they do salvage surgery months or years after radiation treatment. Dr Ko said if he was in my shoes, he would wait on the surgery because I may end up not needing to have the surgery. In his opinion, doing surgery right now would be “over treatment”. Dr. Ko said he would call my surgeon Dr. Worsey and discuss his opinion on my case. I had an appointment with Dr. Worsey the next day (Thu) at 8:00AM for a sigmoidoscopy. I knew he would be pushing to get me on the surgery schedule for next week. When we left Dr. Ko’s office, I told Derek and Amy I was not going to have surgery and I was going to wait 6 months. I was not looking forward to meeting my surgeon the next day because I was sure there was going to a fight.
BTW: No vomiting…YEAH!! Anti-nausea drugs worked great.
BTW: No vomiting…YEAH!! Anti-nausea drugs worked great.
Meeting with Surgeon 2/28/08
We got home from the airport at 9:00 PM last night. I was exhausted and went to bed right away. I had to get up this morning at 6:00 for my sigmoidoscopy at 8:00 AM with my surgeon. For those of you who don’t know….. a sigmoidoscopy is like a “mini” colonoscopy. The difference is they don’t give you any drugs for pain and they don’t go as far up your butt.
I was dreading the meeting. I told Derek “I want to have the sigmoidoscopy first thing before we start discussing the surgery.” “I don’t want an angry surgeon putting a scope up my butt.” Luckily Dr. Worsey was on the same page and he did the sigmoidoscopy first thing. He said that the tumor was a lot smaller and was much more movable (which I guess is a good thing). He seemed very pleased with his observations.
To our surprise, Dr. Worsey said he had spoken with Dr. Ko late yesterday. He was all smiles said that he and Dr. Ko had agreed to give me another 6 weeks of observing tumor shrinkage before doing surgery. He said they will do a PET scan in 6 weeks. If the tumor has shrunk some more then we will continue to monitor it. If it has not gotten any smaller, then we will do surgery. That seemed like a very reasonable approach. I asked about the “window of opportunity” for surgery and he said we should be fine to wait another 6 weeks but that I should understand that the surgery may be more difficult should I need to have it.
I feel so happy that I am not facing surgery next week. Now I have 6 weeks to recover and I may not even need surgery in the end!
I was dreading the meeting. I told Derek “I want to have the sigmoidoscopy first thing before we start discussing the surgery.” “I don’t want an angry surgeon putting a scope up my butt.” Luckily Dr. Worsey was on the same page and he did the sigmoidoscopy first thing. He said that the tumor was a lot smaller and was much more movable (which I guess is a good thing). He seemed very pleased with his observations.
To our surprise, Dr. Worsey said he had spoken with Dr. Ko late yesterday. He was all smiles said that he and Dr. Ko had agreed to give me another 6 weeks of observing tumor shrinkage before doing surgery. He said they will do a PET scan in 6 weeks. If the tumor has shrunk some more then we will continue to monitor it. If it has not gotten any smaller, then we will do surgery. That seemed like a very reasonable approach. I asked about the “window of opportunity” for surgery and he said we should be fine to wait another 6 weeks but that I should understand that the surgery may be more difficult should I need to have it.
I feel so happy that I am not facing surgery next week. Now I have 6 weeks to recover and I may not even need surgery in the end!
Sat. 3/1/08: Amy got accepted for study abroad program!!!
Amy called me last night to let me know that she got accepted to study abroad in Tuscany for 2 months this summer. She is finishing up her degree in illustration at the San Fransciso Academy of Art and should graduate next Dec. This trip sounds really exciting. She takes 3 classes in Landscape painting as they travel all over Tuscany. She had been to Europe during a high school trip 10 years ago and I remember her saying that she enjoyed Italy the best of all the countries she visited. She will leave in early June and will be back in time for my birthday in August. I have posted some of Amy's work in my blog photos. We are all very proud of her!!!
Sunday 3/2/08
Major Milestone....
I was able to walk all the way around the block today! As many of you know, before this all happened I would take my dogs every morning at 6:00 AM for a 1 hour hike up a large mountain in back of my home. For the last week I have been walking for about 10 minutes every day but today decided to do the entire loop (20 minutes) which included some steep up hill parts.
I still have a long way to go before I can do the mountain hike but this is great progress towards that goal.
I was able to walk all the way around the block today! As many of you know, before this all happened I would take my dogs every morning at 6:00 AM for a 1 hour hike up a large mountain in back of my home. For the last week I have been walking for about 10 minutes every day but today decided to do the entire loop (20 minutes) which included some steep up hill parts.
I still have a long way to go before I can do the mountain hike but this is great progress towards that goal.
Thu- March 6, 2008: MY HAIR
I had 3 visitors yesterday. Two of those visitors hadn’t seen me since all of this started. They were expecting to see me without hair or wearing a scarf or wig to cover my baldness. I realized that I hadn’t mentioned in my blog that I never lost all my hair. The doctors, nurses and the literature said that I would loose all my hair due to the Cysplatin Chemo drug. This hair loss can happen anytime up to 2 months after having your last round of chemo. I had my last round of Chemo Jan 10th and it is now March 6th. I guess technically I still have 4 days in which this could happen. Don’t get me wrong…I have been shedding hair as bad as a dog in springtime. But I have been loosing it evenly all over my head. Luckily for me I have Tons of hair so you can’t really tell that is has thinned out. Also I have still have my eyebrows and eyelashes.
Sat. 3/8: STRONG EMOTIONS
Today my friend Ally drove me out to the barn to see my two horses. I haven’t seen my horses in over 3 months. They have been receiving great care by my friend and trainer Marion so I haven’t had to worry about them too much….which is wonderful.
Because of my health situation, Derek has suggested that it would be best to sell my young stallion Capote. I have reluctantly agreed with him because I am not sure if I will be able to ride at the level I used to ride and will be able to manage such a young strong horse.
When I looked in his stall, I couldn’t believe how much he had changed in 3 months. He had grown from a colt into a mature horse. He was so beautiful it took my breath away. This was my dream horse that I was going to do upper level dressage with. I burst into tears in front of Marion and embarrassingly tried to pull myself together. Those who know me know I am not a cry baby so this was unusual behavior and I was surprised at the intense emotion I felt.
Later that day while resting in bed, I was hit once again with a profound feeling of grief. The Margaret of 3 months ago would have tried to stuff the feeling but I decided to try and understand what I was feeling. I realized that this emotion really wasn’t about my young stallion but grief about loosing my old life. When I was at the barn yesterday, I forgot that I was in a battle for my life. Driving home I realized that I had to go back to that fight and thinking once again about tumors, PET scans and colonostomys. I realized how much I wanted my old life back. .
Because of my health situation, Derek has suggested that it would be best to sell my young stallion Capote. I have reluctantly agreed with him because I am not sure if I will be able to ride at the level I used to ride and will be able to manage such a young strong horse.
When I looked in his stall, I couldn’t believe how much he had changed in 3 months. He had grown from a colt into a mature horse. He was so beautiful it took my breath away. This was my dream horse that I was going to do upper level dressage with. I burst into tears in front of Marion and embarrassingly tried to pull myself together. Those who know me know I am not a cry baby so this was unusual behavior and I was surprised at the intense emotion I felt.
Later that day while resting in bed, I was hit once again with a profound feeling of grief. The Margaret of 3 months ago would have tried to stuff the feeling but I decided to try and understand what I was feeling. I realized that this emotion really wasn’t about my young stallion but grief about loosing my old life. When I was at the barn yesterday, I forgot that I was in a battle for my life. Driving home I realized that I had to go back to that fight and thinking once again about tumors, PET scans and colonostomys. I realized how much I wanted my old life back. .
Thu.Mar 13, 2008: Minor Surgery Tomorrow
Tomorrow at 9:00 AM I am going to go into surgery to have my metaport removed. That is the port that had been put into my chest threaded up into my juglar vein and down into the main vein in my body to deliver the chemotherapy. My Doctors seemed to forget that I still had the port in my chest so I reminded them last week that I would like to have it removed.
I was hoping they could do it under a local but they want to put me into “twilight” sleep. So I can’t eat or drink anything after 12:00 AM. I hope I get the same nice male nurse I had last time. They have to cover your face with a sterile drape and last time I felt very claustrophobic. He sat by my head the entire time, gave me oxygen and talked to me so I wouldn’t panic. Normally I prefer female nurses but he was a very special care taker.
I am very happy to get this “thing” out of my body. I can see the catheter outline just under my skin in my neck and chest and it “creeps” me out. I am sure it must me much easier to take it out then to put it in.
I was hoping they could do it under a local but they want to put me into “twilight” sleep. So I can’t eat or drink anything after 12:00 AM. I hope I get the same nice male nurse I had last time. They have to cover your face with a sterile drape and last time I felt very claustrophobic. He sat by my head the entire time, gave me oxygen and talked to me so I wouldn’t panic. Normally I prefer female nurses but he was a very special care taker.
I am very happy to get this “thing” out of my body. I can see the catheter outline just under my skin in my neck and chest and it “creeps” me out. I am sure it must me much easier to take it out then to put it in.
Sat. 3/15/08
It is a cold blustery day in San Diego. I am enjoying watching the palm trees in the yard whipping and bending with the wind.
I got my Metaport removed yesterday without incident. Taking it out was definitely easier that putting it in. My only complaint is that the incision and stitches look like Dr. Frankenstein did the surgery. I hope the scar won’t be too bad as it will show with a certain type of neckline.
I got weighed at the hospital yesterday and found out that I had lost 7 pounds in the last 3 weeks. I was very disappointed but not surprised. I only eat a few things (tomato soup, saltine crackers, applesauce, turkey, avocado, bread, oranges and melon). Derek took me grocery shopping today and tried to entice me to expand my food choices. Amy will be coming to visit next Tue and I am sure she will cook some good food for me.
I got my Metaport removed yesterday without incident. Taking it out was definitely easier that putting it in. My only complaint is that the incision and stitches look like Dr. Frankenstein did the surgery. I hope the scar won’t be too bad as it will show with a certain type of neckline.
I got weighed at the hospital yesterday and found out that I had lost 7 pounds in the last 3 weeks. I was very disappointed but not surprised. I only eat a few things (tomato soup, saltine crackers, applesauce, turkey, avocado, bread, oranges and melon). Derek took me grocery shopping today and tried to entice me to expand my food choices. Amy will be coming to visit next Tue and I am sure she will cook some good food for me.
Sunday 3/23/08
I had a very nice (although subdued) time with Amy. I think she was fine with not doing too much as she has been very busy with work and school. We did manage to go out to lunch and to a movie so I was happy. There is something about having my children around that encourages me to eat. My appetite was fairly good all week and I was able to gain a few pounds.
She bought a new camera for her trip to Italy. It is very high end digital with lots of settings and interchangeable lenses. Amy says her goal is to be able to take photos as good as my stepmother Barbara. Barbara has been the family photographer and we always depend upon her for pictures. Amy played around with her camera taking some pictures of me and the dogs which I posted on my blog.
She bought a new camera for her trip to Italy. It is very high end digital with lots of settings and interchangeable lenses. Amy says her goal is to be able to take photos as good as my stepmother Barbara. Barbara has been the family photographer and we always depend upon her for pictures. Amy played around with her camera taking some pictures of me and the dogs which I posted on my blog.
Thu. 3/27/08
One positive thing about this whole medical experience and my blog is that it has put me back in touch with great people that I had lost contact with or haven’t talked to in a long while. The out pouring of support and love has been so touching that I get tears in my eyes just writing about it.
Yesterday a group of my former riding buddies from 2 years ago organized a luncheon/picnic at the Del Mar Horse Park for me. Kathleen volunteered to drive all the way from Carlsbad to pick me up at home drive me to the horse park and then drive me all the back to my home….what a dear!!! Ann brought in a great lunch and we sat out in front of the dressage barn and caught up on everyone’s lives and the lives of our beloved equine friends. There were many new big and beautiful horses at the Del Mar Dressage barn and it was fun to meet each of them. I was able to be stay and watch Susan teach a lesson. In my mind, I was riding every circle and transition her student made. I am anxious to be able to ride my own horse when I am ready.
Yesterday a group of my former riding buddies from 2 years ago organized a luncheon/picnic at the Del Mar Horse Park for me. Kathleen volunteered to drive all the way from Carlsbad to pick me up at home drive me to the horse park and then drive me all the back to my home….what a dear!!! Ann brought in a great lunch and we sat out in front of the dressage barn and caught up on everyone’s lives and the lives of our beloved equine friends. There were many new big and beautiful horses at the Del Mar Dressage barn and it was fun to meet each of them. I was able to be stay and watch Susan teach a lesson. In my mind, I was riding every circle and transition her student made. I am anxious to be able to ride my own horse when I am ready.
Monday April 7th.
I have been meaning to update my blog but have been reluctant because I don’t really have any good news. I thought I was starting to feel a lot better but then I ended up in bed for the last 4 days. I won’t go into the gory detail with my physical problems but they are worrisome. Derek said I should go see the Doctor….but I am not sure what Doctor? My oncologist says that I shouldn’t be experiencing any more effects from the chemo, my radiologist deals only with the radiation therapy and my surgeon just wants to cut everything out and be done. I am sick of being injected with poisons, prodded with instruments and having my body cut on. Also my hair has been falling out at an alarming rate. I was told that if I was going to loose my hair it would happen within 2 months of chemo. It has been 3 months since my last round of chemo…perhaps I am having a delayed reaction. Derek told me this weekend that he can tell I am loosing weight again. Most food is disgusting to me and it is such a chore to force myself to eat.
I am now starting my 5th month of this journey back to health and am wondering when I feel half way “normal” again.
I have a PET Scan next Monday (4/21) which will let us know what is going on with the tumor. I have no idea what they will find. Obviously I am hoping that it will be good news…but I am starting to feel numb to the whole process. I have had so many disappointments these last months. I need to find my “Happy Place” once again!
I am now starting my 5th month of this journey back to health and am wondering when I feel half way “normal” again.
I have a PET Scan next Monday (4/21) which will let us know what is going on with the tumor. I have no idea what they will find. Obviously I am hoping that it will be good news…but I am starting to feel numb to the whole process. I have had so many disappointments these last months. I need to find my “Happy Place” once again!
Wed. April 9,2008
I went to the doctor today and he didn’t know why I was feeling so fatigued, painful with my hair falling out. He said that I shouldn’t be having any more affects from the chemo/radiation. However all the docs have told me that the tumor shrinking affects of chemo/radiation can last up to 6 months after treatment. So it seems to me that the side affects could also be present for up to 6 months as well. He did do blood test and other test and said everything looked normal and there were no red flags. I had lost weight again and he told me that I really needed to try and eat more. He put me back on the pain meds and told me no driving. I was really hoping to be able to drive and get some independence back…..so I am very disappointed that won’t happen for a while longer.
On a positive note, my Dad and Step Mom are coming for a visit this Sat. and staying for a few days. I am looking forward to the distraction of having some visitors.
On a positive note, my Dad and Step Mom are coming for a visit this Sat. and staying for a few days. I am looking forward to the distraction of having some visitors.
Monday, April 21, 2008
Monday 4/21/08 PET Scan today
I had my PET/CT scan this morning at 7:30 AM. Derek took me to the imaging center and waited for me. I was done by 9:30 and Derek drove me back home. They said it may take up to 72 hours to get the results back to my oncologist in San Diego. I am also having them send the results to Dr. Ko the oncologist at UCSF for a second opinion.
Both Derek and I had a very dream filled restless sleep last night. Derek dreamed that I was stealing forms from a city office and that he kept telling me not to do it….but I wouldn’t listen. I dreamed that I was doing things that would screw up the test results, like eating before hand, being late for the test and wearing the wrong clothes. It seems that we are both anxious about this test and it is being played out in our subconscious minds.
Yesterday we discussed what the various outcomes could be and what action we would take. The scenarios are as follows: One: The tumor has not changed in size or has increased in size. Two: The tumor has become smaller since my last PET scan 8 weeks ago. Three: The tumor is completely gone. If the results are number one, then I will go ahead and have the surgery to remove my lower bowel which will mean a colonostomy for the rest of my life. If it is number two, then we will wait another 6 weeks and have another PET scan to see if the tumor is gone. If it is number three, then I will opt to have my bowel reconnected via surgery and have PET scan every 6 months and pray the cancer doesn’t return.
I will post the results to my blog as soon as I know the outcome.
Thanks for all your prayers and healing thoughts.
Both Derek and I had a very dream filled restless sleep last night. Derek dreamed that I was stealing forms from a city office and that he kept telling me not to do it….but I wouldn’t listen. I dreamed that I was doing things that would screw up the test results, like eating before hand, being late for the test and wearing the wrong clothes. It seems that we are both anxious about this test and it is being played out in our subconscious minds.
Yesterday we discussed what the various outcomes could be and what action we would take. The scenarios are as follows: One: The tumor has not changed in size or has increased in size. Two: The tumor has become smaller since my last PET scan 8 weeks ago. Three: The tumor is completely gone. If the results are number one, then I will go ahead and have the surgery to remove my lower bowel which will mean a colonostomy for the rest of my life. If it is number two, then we will wait another 6 weeks and have another PET scan to see if the tumor is gone. If it is number three, then I will opt to have my bowel reconnected via surgery and have PET scan every 6 months and pray the cancer doesn’t return.
I will post the results to my blog as soon as I know the outcome.
Thanks for all your prayers and healing thoughts.
Monday, April 14, 2008
5/14/08: Checking back into my Blog
I have taken a break from blogging mostly because I experienced a very bad depression after my last hospitalization. I didn't want to write in my blog because I was having so many negative thoughts and didn't want to seem like a big complainer. You would have thought I would be feeling happier because of the the latest PET scan results but that euphoria was very short lived and only lasted that evening.
I think most of my depression centered on the fact that I was still feeling so bad physically. It had been 6 months since this had all started and I was still spending most of my time in bed. Sometimes I was so weak I could barely walk up the stairs in our home. I was still loosing weight and my hair was falling out 4 months after the end of chemo.
What turned this around was when I made an appointment with my family practice doctor hoping that she could figure out what was wrong with me. The day of the appointment was a very low point. I couldn't stop crying and was fighting with Derek all the way to the Doctor and even in the exam room. I thought for sure that she would think I was a lunatic and tried to compose myself.
She listened to my situation with a lot of compassion in her eyes. She said that with what I have been through she wouldn't expect for me to be feeling any better than I am. She said that it would take probably 1 year to get back to my "normal" level of activity and perhaps longer. She suggested I see a nutritionist to try and help design a diet that would enable me to gain weight. She doubled the dose of my antidepressant and did a series of blood test to make sure everything was fine.
It took about 4 days for the new dosage of antidepressants to work and now I feel much better. I also know that it is going to be a much longer time than I originally thought to completely recover.
I think most of my depression centered on the fact that I was still feeling so bad physically. It had been 6 months since this had all started and I was still spending most of my time in bed. Sometimes I was so weak I could barely walk up the stairs in our home. I was still loosing weight and my hair was falling out 4 months after the end of chemo.
What turned this around was when I made an appointment with my family practice doctor hoping that she could figure out what was wrong with me. The day of the appointment was a very low point. I couldn't stop crying and was fighting with Derek all the way to the Doctor and even in the exam room. I thought for sure that she would think I was a lunatic and tried to compose myself.
She listened to my situation with a lot of compassion in her eyes. She said that with what I have been through she wouldn't expect for me to be feeling any better than I am. She said that it would take probably 1 year to get back to my "normal" level of activity and perhaps longer. She suggested I see a nutritionist to try and help design a diet that would enable me to gain weight. She doubled the dose of my antidepressant and did a series of blood test to make sure everything was fine.
It took about 4 days for the new dosage of antidepressants to work and now I feel much better. I also know that it is going to be a much longer time than I originally thought to completely recover.
May 19, 2008: Butt Pain!!
I have decided to keep up with my blog even if the news isn't so good. I have been having an inordinate amount of pain in my rectum and buttocks. It was so bad Sat. night that I was worried I was going to overdose on narcotics. I think I took two vicodeine and 30 mg on morphine followed by 20 mg of ambian. Finally at 1:30 AM on Sunday morning I was able to fall to sleep. Obviously I can't take that many narcotics so I backed way off on Sunday and had a pretty bad day. Luckily when I lay down the pain was bearable....so I was able to sleep most of the day on Sunday. What is weird is I was feeling really great on Friday and part of the day Sat....then I took a big nose dive (or I guess in my case a butt dive).
Derek says I should go see the colo/rectal surgeon so he can take a look "up there". The last thing I want to do is have some guy poke a scope up my butt. Of course we had a big argument about this. Let me tell you I am so tired of discussing my rectum with my husband (I am sure he feels the same way). I see my family practice doctor on Wed. and we decided to let her make the decision.
Amy comes to visit me tomorrow for a few days before her trip to Europe. I am looking forward to seeing her.
Derek says I should go see the colo/rectal surgeon so he can take a look "up there". The last thing I want to do is have some guy poke a scope up my butt. Of course we had a big argument about this. Let me tell you I am so tired of discussing my rectum with my husband (I am sure he feels the same way). I see my family practice doctor on Wed. and we decided to let her make the decision.
Amy comes to visit me tomorrow for a few days before her trip to Europe. I am looking forward to seeing her.
Sunday, April 13, 2008
PLEASE READ!!!
I am a computer retard!!! I have completely screwed up the format of this blog and have spent hours trying to fix it. The solution is to either ask Derek for help.....or start a new blog!!! Asking Derek for help will probably entail a lot of arguing and gnashing of teeth. So dear readers please book mark: http://iwillbecuredpart2.blogspot.com/. This time I will start out with the correct format. I will also start updating regularly now that I don't have to fight with it each entry I make.
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