So I’m going to give a quick overview followed by some more detailed info… The fourth round of chemo was the hardest. While I was receiving the chemo drip, I caught pneumonia which put me into Immediate Care. It was extremely scary and exhausting. Visitors would have been a bit much for me to handle. I made it through after a month’s long stay at Seton. Thank you to all for your thoughts and well wishes. Your prayers and meditation brought me through this VERY challenging time.
The results of the fourth round progress have not been measured as of yet… results are ongoing and take time to reveal themselves. I have made the trek to MD Anderson. I am not a candidate for surgery because of the involvement of carotid artery. Things are serious so the next step is a chemo and radiation combo. With the help of my parents, I have found some really awesome doctors that have offered me hope for a cure. Dr. Kapadia is my MD Oncologist through TX Oncology and Dr. Morgan is my radiologist through a local private practice. MD Anderson is a great place on the forefront of different medical breakthroughs. Though they have TONS to offer, I prefer the smaller offices with their unshakeable and sincere attention to bedside manner. Instead of offering doom and gloom to a very well known/understood serious situation, the doctor’s are answering my hard questions and flexing with my beliefs or at least being respectful when I share my spiritual/whole health concerns.
So… I am now temporarily living with my parents. They have been great but I gotta tell ya that it’s hard going back to living with your parents when you’re in your 30’s. Obviously Max is spending the majority of his time with Chris in Austin – I’ll touch more on this very important subject toward the end of this blog entry for sure!!! Right now the schedule is 6 full weeks of treatment. Each Monday I will receive chemo (Erbitux) which is a 2 hour drip between receiving regular saline fluids. The second half starting on week 3, I will receive radiation twice a day (once in AM and once in PM). It will be the same amount of radiation, just broken in two sessions as it has shown great results in cases similar to mine. As treatment continues, I will have to rely more and more on my feeding tube. Eating and talking are becoming more and more difficult but I’ve been told this is a good sign that the Erbitux is doing its job. The necrosis is becoming more and more pronounced in my neck/jaw area. The tumor is about the size of a well ripened nectarine.
The nectarine is taking its toll. I try not to let it bother me, but having no hair, my body shape changing due to all the meds and my crazy self-imposed diet of unhealthy grubbing…. I’ve become much of a recluse. It’s hard to not let this affect me. Let’s face the fact that this is WAY past vanity. Anyone in my situation couldn’t help but notice the on-lookers or the kids that loudly ask parents what’s wrong with me. Just have to keep reminding myself the swelling is a good thing… (there are signs in which the swelling occurs – redness, rash, all that kind of good stuff that is expected with the Erbitux progression). Man, I don’t like this stuff. It’s really not fun and I kinda feel bad for letting the physical appearance stuff affect me as much as it has lately. I keep thinking my mind will change or I’ll be able to get a grip or snap out of it, but I just can’t get past this for some reason.
Anyway… Max! It tears me up that I can’t see him every day. I cherish the time we have together even if it is assisted. Max brings me such great joy and frustration! He’s at that age where he is learning to communicate and is trying so hard to get across his feelings and daily experiences. Max is doing a great job, but everything keeps changing on him… Mama’s sick so Mama moves, he graduates class in daycare but then is pulled from the program (as per Chris’ decision), he makes seemingly random trips back & forth – Houston/Austin, family isn’t on the same page because communication isn’t being addressed even when it’s addressed. It breaks my heart to say good-bye to Max on the weekends. We are slowly working towards a month share but I’m not really sure that’s what’s best for Max. It’s all about how Max acclimates to everything and how I am progressing so everything is really touch and go. I knew this would all be a challenge but nothing like this. Chris and I seem to be making progress when we talk on the phone, but then Chris turns around and does whatever he wants. I know I’ve gotta let things go… he’s the one with Max in Austin and has a right to parent the way he wants, but it’s important to keep me posted on things like daycare changes and/or challenges when Max just graduates from a program he was thriving in and seemed to really enjoy.
I want to help Chris… I tried doing so from a hospital bed by coordinating help even if just in a promise to be around if called upon. Chris says he needs a warm body but doesn’t want to reach out. He refuses to plan help in advance. I don’t think he’s doing it maliciously or to meet his own demise, I feel that he was never taught that advance notice is necessary outside of bloodlines (and inside for that matter) especially if those contacts have children or their own rigid schedule. This is by no means Chris bashing AT ALL… everyone has been so kind to offer help, I just can’t direct anymore especially if Chris isn’t going to reach out when he needs it. All I can say is just ring Chris from time to time to see if the paint is still sticking on the walls. He is doing a good job with the hand he was dealt, Meghan has even moved in with the boys. Teena is still Teena so I’m hoping things will eventually smooth over and we can ALL be civil. The McDonald’s have been so kind, I hope that remains as we journey on sharing our love for Max.
As for me and the help you can give me… your positive energy and hope as I go through this new-ish chemo/radiation combo. I hope and plan to join a support group SOON! It is very important that I get this accomplished as well as finding a local healing team or individual (already put in motion!) Okay… I’m beginning to ramble because I am tired. Love and Light to you all!!
Sunday, August 23, 2009
Sunday, July 5, 2009
Getting Personal
There is a reason why I haven’t updated the blog in such a while… The most recent update is very emotional for me. You’ve probably noticed my entries have been mostly business followed by good news. There is good news… one tumor has gone from 5.9 cm down to 4.6 cm. Also, a few lymph node tumors have disappeared. To me this is huge and remains very good news and has been due to chemo, seeing the group of healers every day, and receiving all of your prayers/positive energy/thoughts. Thank you to all!
Well, the oncologist feels the progress isn’t enough and I need to seek further treatment. The “next step” is MD Anderson. After several appointments with a surgeon, oncologist, radiologist, and speech therapist, the overall consensus is to be determined Thursday (7/2/09) when they all met and discussed my case. Most of them shared their opinion during the initial one-on-one appointments which where two options... Those options were surgery followed by chemo and radiation or radiation and chemo in hopes surgery would not be necessary but it would most likely remain on the table. The very extensive surgery would include a plastic surgeon for reconstruction and a tracheotomy. The only two reasons the surgeon would refuse to do the surgery is if the carotid artery is surrounded by a tumor or if the base of the tongue is overly involved. The carotid artery scenario leaves the patient with a 50%-50% chance of bleeding out on the table. Base of the tongue scenario is a quality of life situation as the base of the tongue involves the muscle which allows you swallow which would leave me bound to the feeding tube I was hoping would be temporary. Plus sign language would be my only option to communicate.
Radiation is not an option in my eyes. It leaves the mouth without function of the salivary glands, which if you ever suffered from dry mouth it sucks on every level! I currently have to deal with it at night… When I lay down either my saliva glands are overactive and I drool or they stop all together and I wake up every couple of hours and have to hold water in my mouth long enough for the tissue to absorb and retain some sort of moisture. If surgery is involved the radiated tissue will not heal properly and healing will be delayed as that is the nature of radiated mucosa.
I originally went to MD Anderson as the surgeon is willing to work with me on the surgery I want being the removal of the lymph nodes that are affected by disease. So it makes sense for me to move to Tomball to be closer to receive treatment, whatever that turns out to be. Two treatment options I don’t believe in that are in “my best interest” and is my “only hope for a cure.” It also makes sense as Chris and I are separated and I really have no other option to stay here in Austin, a place I have grown to love very much. Chris and I have agreed to share custody of Max which is tearing me up inside. I hate the idea of bouncing Max from one town to another. This set up of sharing him as we can has taking a toll on Max. He has been acting out with both Chris and I as well as having days where he is easily upset at school. This whole situation makes me wonder if our three person family is slowly turning into two, two person families with one common son. Some say that’s what’s best for all three of us but I personally feel that Max deserves a loving full-time and full-time loving mom & dad.
Chris and I are polar opposites especially when it comes to raising Max. But that doesn’t change how much a care for Chris and how much I love Austin and my Austinite friends. This is what my friend calls a temporary exile but to me all of this seems too permanent. I want to work things out with Chris and find a balance that works for us. What that means for “us,” I have no idea. My focus right now is my health. Chris has helped me find another working option for my health in Essiac Tea. It has proven results in cancer patients. A good friend of mine who is also a part of the healing group and a nutritionist to boot has found an Essiac extract at an Austin-local store. The tea is a long process to make which Chris found out first hand but the recipe makes quite a bit. This 4th round of chemo (starting tomorrow, 7/6/09) I will have more things in my corner with the healers, the tea, and several books to help guide me to center my energy to whole health over the entirety of my life, however long that maybe.
I am trying to overcome a lot of hurt and anger in my life. The reason I am bringing this up in the blog is so you all know I am learning to be a new person. How I was living my life and letting certain things affect me has a lot to do with why and how I developed cancer. Yes, genetic predisposition has some to do with my health, but if you think about that, we all have the genetic chance to develop cancer. I am trying to forgive Chris and to forgive myself in how we have destroyed our once healthy but very brief loving balance. We have done and said things we both regret and we put Max through some pretty hellish situations but at least we are addressing the situation by trying a change.
I am also trying to get over the very deep hurt from my mother-in-law. She said very publically that I have never wanted to be a mother and have no idea how to handle motherhood. I gave her several chances to explain herself because I feel if she could so openly say that which such conviction, something about me has to change. I want to change whatever that trait/characteristic is because I don’t ever want Max to feel like he is anything other than the ray of hope he brings me every day. He is why I am seeking out every option with 100% effort to become cancer free. If any of you reading this can shed some light on Teena’s statement, I would be much obliged to the corrective criticism. I know every parent has their moment where their cute little two-year-old/three-year-old shouts out a dirty word in public much to the parents’ chagrin, or the no-yes-no-wants go on for a fourth round and becomes a bit more than draining. I would assume Teena meant something more than that so if any of you have an inkling, please let me know. I want to be the mother Max deserves.
I do want to end this blog on a high note which will be about my mom. She has been such a trouper through all of this. She has spent several nights with me catching what view Z’s one can in the chair beside my hospital bed. She has summoned nurses to my room like no other when my body has forsaken me at both ends (how timely!). She took part in many drug related rants I went on and gracefully shushed me upon anyone’s arrival as to not further embarrass myself past the giggling nurses and aids. My mom and I have been able to look at this time as a blessing to grow our relationship. And as most of you know this is a relationship I have always wanted but never thought I would be able to have. For her I am truly thankful. I honestly don’t know if I could make it through all this mess without her and her crazy organization. She keeps time of all meds, crushes and even administers them if I am asleep away from the hospital to get me those few precious uninterrupted moments of slumber. My mom has become my right hand and my best friend. She has let me cry on her shoulder, listen to my what seem to be never ending rants while tossing in her two to ten cents along the way, and she has rallied me through the last hours of chemo drips. I am forever thankful for her role in this very sticky situation life has me in currently. She is an amazing woman, the kind of mother I hope to be for Max.
Well, the oncologist feels the progress isn’t enough and I need to seek further treatment. The “next step” is MD Anderson. After several appointments with a surgeon, oncologist, radiologist, and speech therapist, the overall consensus is to be determined Thursday (7/2/09) when they all met and discussed my case. Most of them shared their opinion during the initial one-on-one appointments which where two options... Those options were surgery followed by chemo and radiation or radiation and chemo in hopes surgery would not be necessary but it would most likely remain on the table. The very extensive surgery would include a plastic surgeon for reconstruction and a tracheotomy. The only two reasons the surgeon would refuse to do the surgery is if the carotid artery is surrounded by a tumor or if the base of the tongue is overly involved. The carotid artery scenario leaves the patient with a 50%-50% chance of bleeding out on the table. Base of the tongue scenario is a quality of life situation as the base of the tongue involves the muscle which allows you swallow which would leave me bound to the feeding tube I was hoping would be temporary. Plus sign language would be my only option to communicate.
Radiation is not an option in my eyes. It leaves the mouth without function of the salivary glands, which if you ever suffered from dry mouth it sucks on every level! I currently have to deal with it at night… When I lay down either my saliva glands are overactive and I drool or they stop all together and I wake up every couple of hours and have to hold water in my mouth long enough for the tissue to absorb and retain some sort of moisture. If surgery is involved the radiated tissue will not heal properly and healing will be delayed as that is the nature of radiated mucosa.
I originally went to MD Anderson as the surgeon is willing to work with me on the surgery I want being the removal of the lymph nodes that are affected by disease. So it makes sense for me to move to Tomball to be closer to receive treatment, whatever that turns out to be. Two treatment options I don’t believe in that are in “my best interest” and is my “only hope for a cure.” It also makes sense as Chris and I are separated and I really have no other option to stay here in Austin, a place I have grown to love very much. Chris and I have agreed to share custody of Max which is tearing me up inside. I hate the idea of bouncing Max from one town to another. This set up of sharing him as we can has taking a toll on Max. He has been acting out with both Chris and I as well as having days where he is easily upset at school. This whole situation makes me wonder if our three person family is slowly turning into two, two person families with one common son. Some say that’s what’s best for all three of us but I personally feel that Max deserves a loving full-time and full-time loving mom & dad.
Chris and I are polar opposites especially when it comes to raising Max. But that doesn’t change how much a care for Chris and how much I love Austin and my Austinite friends. This is what my friend calls a temporary exile but to me all of this seems too permanent. I want to work things out with Chris and find a balance that works for us. What that means for “us,” I have no idea. My focus right now is my health. Chris has helped me find another working option for my health in Essiac Tea. It has proven results in cancer patients. A good friend of mine who is also a part of the healing group and a nutritionist to boot has found an Essiac extract at an Austin-local store. The tea is a long process to make which Chris found out first hand but the recipe makes quite a bit. This 4th round of chemo (starting tomorrow, 7/6/09) I will have more things in my corner with the healers, the tea, and several books to help guide me to center my energy to whole health over the entirety of my life, however long that maybe.
I am trying to overcome a lot of hurt and anger in my life. The reason I am bringing this up in the blog is so you all know I am learning to be a new person. How I was living my life and letting certain things affect me has a lot to do with why and how I developed cancer. Yes, genetic predisposition has some to do with my health, but if you think about that, we all have the genetic chance to develop cancer. I am trying to forgive Chris and to forgive myself in how we have destroyed our once healthy but very brief loving balance. We have done and said things we both regret and we put Max through some pretty hellish situations but at least we are addressing the situation by trying a change.
I am also trying to get over the very deep hurt from my mother-in-law. She said very publically that I have never wanted to be a mother and have no idea how to handle motherhood. I gave her several chances to explain herself because I feel if she could so openly say that which such conviction, something about me has to change. I want to change whatever that trait/characteristic is because I don’t ever want Max to feel like he is anything other than the ray of hope he brings me every day. He is why I am seeking out every option with 100% effort to become cancer free. If any of you reading this can shed some light on Teena’s statement, I would be much obliged to the corrective criticism. I know every parent has their moment where their cute little two-year-old/three-year-old shouts out a dirty word in public much to the parents’ chagrin, or the no-yes-no-wants go on for a fourth round and becomes a bit more than draining. I would assume Teena meant something more than that so if any of you have an inkling, please let me know. I want to be the mother Max deserves.
I do want to end this blog on a high note which will be about my mom. She has been such a trouper through all of this. She has spent several nights with me catching what view Z’s one can in the chair beside my hospital bed. She has summoned nurses to my room like no other when my body has forsaken me at both ends (how timely!). She took part in many drug related rants I went on and gracefully shushed me upon anyone’s arrival as to not further embarrass myself past the giggling nurses and aids. My mom and I have been able to look at this time as a blessing to grow our relationship. And as most of you know this is a relationship I have always wanted but never thought I would be able to have. For her I am truly thankful. I honestly don’t know if I could make it through all this mess without her and her crazy organization. She keeps time of all meds, crushes and even administers them if I am asleep away from the hospital to get me those few precious uninterrupted moments of slumber. My mom has become my right hand and my best friend. She has let me cry on her shoulder, listen to my what seem to be never ending rants while tossing in her two to ten cents along the way, and she has rallied me through the last hours of chemo drips. I am forever thankful for her role in this very sticky situation life has me in currently. She is an amazing woman, the kind of mother I hope to be for Max.
Tuesday, June 2, 2009
Chemo Pet
Today I have a PET scan to see progress of chemo. The CT I had in the hospital showed no change although Dr. Patt is not convinced of the results simple because they differ from her clinical testing. The hope and expectation is that the tumor the CT picked up is a sack of necrosis (dead cancer cells). The result of the PET scan will be discussed in my doc appointment tomorrow morning which will also determine the next step of treatment. If there is necrosis then I will continue with chemo tomorrow as planned. They will admit me to the hospital tomorrow (Wednesday, June 3, 2009) to administer chemo. Hopefully I will only be there a few days as opposed to weeks! If the PET scan comes back that there is no change, radiation and surgery will be the Western next step. I am trying to avoid BOTH in that next step!!! Radiation is VERY damaging to the mouth with long term effects which can be very devastating to live with. Surgery on the tongue is tricky… the tongue, being a muscle, is like a whole bunch of rubber bands being stretch underneath the mucosa (thin outer later). Once you cut into the muscle, the fibers (rubber bands) retract. If the surgeon misses one active cancer cell, wherever the tainted retracted fiber lands, cancer can develop in that area. The form of cancer I have is very rare and there is not much research going into this particular area of head & neck cancer. So even if I get the best of the best surgeons to do the job, there will still be a lot of educated guessing going on rather than moves directed by fact and proven experience.
Please keep me in your thoughts and prayers over the next few days. To recap, I’m hoping the PET scan results in a large percentage of necrosis if not total necrosis! I will post again tomorrow with the results of the doc visit along with hospital info.
Thank you all for your love and support. I hope this posting finds you and yours happy and healthy.
Please keep me in your thoughts and prayers over the next few days. To recap, I’m hoping the PET scan results in a large percentage of necrosis if not total necrosis! I will post again tomorrow with the results of the doc visit along with hospital info.
Thank you all for your love and support. I hope this posting finds you and yours happy and healthy.
Tuesday, May 26, 2009
A Shorty Uppie!
I've been released from the hospital - YaY!!! Counts are up, spirits are up, motivation is up and running. More in a bit -- I'm actually eating solid(ish) food. :oD
Monday, May 11, 2009
Quickie
This entry is short -- I will write more this evening. I am being release early because I had a BAD reaction to chemo. So if you are planning to visit me today we will have to take a raincheck. Love to you all!!
Thursday, May 7, 2009
Separation
Being separated during this period in my life is R-O-U-G-H. I miss seeing Max on a time scale that isn’t measured by minutes or hours and ends with “See you later, have fun with Daddy! Remember I love you”… Ukghhh – just thinking about having to say that again makes my stomach turn. I can’t imagine what it’s like for Chris, being Daddy & Mommy. Having to do all the structure of dropping Max off and picking him up from daycare, making sure he’s clothed and fed while learning how to do the details of building a relationship with the daycare teacher, playing rag ball during bath time and snuggling in bed while unwinding to Max’s somewhat undecipherable ramblings about his day... it’s got to be Rough.
Keep in mind Chris has been through this three other times in the last 5-6 years. There was his Aunt Lizzie, Grandma, and then Grand Will. All of whom died. I am going to turn his cancer related karma around though. I will survive this. But what I need is Chris to survive this so I am turning to my Austinite friends… Please help! What Chris needs is some home-cooked meals. If any of you can cook, please drop off some food to Chris and Max. Chris usually gets home around 6pm-ish during the weekday or just give him a buzz to coordinate a time on the weekend. Also, those of you who live or work up North, if you could pick up Max from daycare which is located off Dessau Rd/Howard (close to Howard/IH 35) it would really help Chris out. Those are the only two things Chris has relayed to me as things he needs help with, though if you can think of anything else, take the initiative! I’m sure his feelings will not be hurt. Help is always welcomed and very much appreciated.
Things I am learning through this experience are anyone with a positive attitude and a strong support system can make it through cancer, even if that cancer is coupled with a separation. Like I said, this period is Rough. There are nights I cry myself to sleep, days I wish I were in someone else’s shoes and day dreams where I am on an island somewhere living a completely organic lifestyle (even when it comes to shoes!) while giving Western Medicine the finger. R-O-U-G-H, but Chris, Max and I will make it through to see greener pastures.
Keep in mind Chris has been through this three other times in the last 5-6 years. There was his Aunt Lizzie, Grandma, and then Grand Will. All of whom died. I am going to turn his cancer related karma around though. I will survive this. But what I need is Chris to survive this so I am turning to my Austinite friends… Please help! What Chris needs is some home-cooked meals. If any of you can cook, please drop off some food to Chris and Max. Chris usually gets home around 6pm-ish during the weekday or just give him a buzz to coordinate a time on the weekend. Also, those of you who live or work up North, if you could pick up Max from daycare which is located off Dessau Rd/Howard (close to Howard/IH 35) it would really help Chris out. Those are the only two things Chris has relayed to me as things he needs help with, though if you can think of anything else, take the initiative! I’m sure his feelings will not be hurt. Help is always welcomed and very much appreciated.
Things I am learning through this experience are anyone with a positive attitude and a strong support system can make it through cancer, even if that cancer is coupled with a separation. Like I said, this period is Rough. There are nights I cry myself to sleep, days I wish I were in someone else’s shoes and day dreams where I am on an island somewhere living a completely organic lifestyle (even when it comes to shoes!) while giving Western Medicine the finger. R-O-U-G-H, but Chris, Max and I will make it through to see greener pastures.
Wednesday, May 6, 2009
Breaking Free Bald
In celebration of Cinco de Mayo, I was released from the hospital!! Well… perhaps it was more due to my progress toward overall health. At any rate I went “home” with my mom, whom I will be living with here in Austin while I recover. The second round of chemo begins Monday, May 11th. Same gig as before… 9 hour infusion at TX Oncology Center followed by 3 days of the continuous chemo drip via my take-home pump. Please keep me in your thoughts/prayers as I enter my next round. I am staying positive this round will be “easier” than the last as I am entering it with a much stronger body and a functioning digestive system.
Apparently my digestive system hasn’t worked for a while which left me malnourished long before the first round of chemo. Now I have a feeding tube, I no longer dread every meal. I was very leery at first, because – c’mon! Who wants a tube coming out of their stomach?? Thankfully I can still eat orally, but now I don’t have to rely on my struggle to eat. Whatever I have via mouth is just a bonus that goes toward me gaining weight which we all know I desperately need to do… I guess in a way I’m lucky – I can eat desserts all day and know that I’m still getting all the nutrition I need!
Those of you who are in Austin, please feel free to come visit me Monday during the infusion. It gets pretty boring sitting there for 9 hours. I start the drip at 8:45a at the Texas Oncology building which is located at 6204 Balcones Drive – 78731. Take the Far West exit and head South on the feeder. It eventually turns into Balcones Drive; just another strip of pavement which has more than one name here in Austin. Honestly, I don’t know how new comers ever make it around in this town. Be forewarned I have no hair… I have noticed from hospital visitors I should warn people before they see me.
So there you have it, my release information, my peg tube nutrition, and my bald head. What an update!!
Apparently my digestive system hasn’t worked for a while which left me malnourished long before the first round of chemo. Now I have a feeding tube, I no longer dread every meal. I was very leery at first, because – c’mon! Who wants a tube coming out of their stomach?? Thankfully I can still eat orally, but now I don’t have to rely on my struggle to eat. Whatever I have via mouth is just a bonus that goes toward me gaining weight which we all know I desperately need to do… I guess in a way I’m lucky – I can eat desserts all day and know that I’m still getting all the nutrition I need!
Those of you who are in Austin, please feel free to come visit me Monday during the infusion. It gets pretty boring sitting there for 9 hours. I start the drip at 8:45a at the Texas Oncology building which is located at 6204 Balcones Drive – 78731. Take the Far West exit and head South on the feeder. It eventually turns into Balcones Drive; just another strip of pavement which has more than one name here in Austin. Honestly, I don’t know how new comers ever make it around in this town. Be forewarned I have no hair… I have noticed from hospital visitors I should warn people before they see me.
So there you have it, my release information, my peg tube nutrition, and my bald head. What an update!!
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