A fellow cancer assassin and I had a short conversation on facebook this morning about feeling tired and lethargic from treatment and wanting to do too much. This is something that is always on my mind and I thought it would make for an excellent blog post, so here goes.
I have always been proud of my ability to get things done. I am a multi-tasker at heart, an organizer, a cleaner (love a clean home) and just a "doer" in general, often trying to fit in a hike or climb in with all the rest of my daily "chores". Basically I think that when I was diagnosed last March and knew that the statistics for my survival of even one year didn't look too good, something inside of me shifted. I had this deep down feeling that I just had to do it all, see it all, experience it all, not missing or letting slip by one single second of my life. I wanted to take it all in and hold onto it, there were still so many things I wanted to do in my life, so many things I wanted to see, smell and hear. I went on a binge trying to fit everything in, not wanting to miss a second of it. Keep in mind this was on top of everything else going on: research about food/cosmetics/household products, or about therapies and treatments that could help me kill the cancer that had all of the sudden become the most prominent thing in my life.
One day I came into the Center for Traditional Medicine for my regularly scheduled nutritional IV, my friend Susan (another fellow cancer assassin) was there and as usual we started talking about all the things we were doing etc. She realized that I was completely exhausted (something that I am not good at telling myself) and suggested that I slow down a bit. At first I was like "No way! I've gotta see it all before it's too late!" It was at this point that Susan gave me a little bit of advice that has completely changed the way I look at my time, energy levels, and priorities. I want to share it with you all, even if you don't have cancer, because it is so worthy of sharing. It goes a little like this:
Susan explained that I should look at my day and energy levels much like a tank of gas. I know that I have a certain amount of energy each day that oscillates wildly when I get chemo or an IV (less energy then). From this I can sort of plan the things that I want to do that day. Prioritize the most important things or the things that you really want to do (don't forget that even having FUN expends your precious energy too) and do those first. If you have any energy left over after that then you can decide exactly what you want to devote that energy to. Simple huh?
For me, I know how much energy I will have to do things each day. Usually for me preparing food and the regular duties take quite a bit of energy, especially after chemo. I know that I want to get to the climbing gym or out on the crag so I save some energy for that (perhaps blow off vacuuming or dusting that day for some fun instead). Basically I think that this bit of advice helps me to know that I do indeed have a limit. As much as I don't want to admit it, and as much as I want to do it all, I just know that if I do I will be paying for it the next day as I lay on the sofa until 2 or 3 in the afternoon completely exhausted, OR my liver is hurting and most likely it came from overdoing it the day before and not taking some of my energy and time to take care of myself first. I know just how important it is to have the energy to fight this stupid cancer and if I use it all up cleaning the house or doing other things I wont have any left to fight. That is just not acceptable in my world. I truly feel that my cancer was partly caused by too much stress (or at least amplified by it). Chinese medicine says that the liver is where we hold resentment, anger and stress, no wonder mine ended up compromised! So these days I try to live as stress free as possible, for my own sanity and for my health. I realize that I have a certain amount of energy every day and I try to plan accordingly. Sometimes I still overdo it, but at least I can now realize when that happens and try to prevent it from recurring. I still get frustrated, VERY frustrated that I cannot do all the things I want to do and that my brain has turned to mush from chemotherapy. I cannot concentrate on anything most of the time (even 1/2 hour sit-coms on tv) and I constantly lose my train of thought and for the life of me I can never ever seem to find the word I am looking for. Those things frustrate me more than I even know. But out of all of this crap, this is the golden nugget that I have come away with.
I deserve to be healthy.
I deserve to live a stress free life as much as possible.
I try to look at these frustrations and find something good in there like this:
I now have the time for myself, time to rest as much as I want, time to take care of me. So what if I can't remember things sometimes, that just keeps it from getting old and hey, I save a ton of money on movies because I don't remember watching them so they are all like new releases to me :)
It is easy to get lost in all the overwhelming things that cancer brings into your life and to feel so very deflated, defeated, lost and alone. I am not going to say that this doesn't happen to me, because it does. I throw myself a huge pity party from time to time and I am not ashamed to say it. It feels good to get it out and rant and cry and scream at the unfairness of it all and THAT is important. Getting it out prevents me from "holding it inside" and creating more avenues for cancer to thrive inside me. I am not saying that anyone, including myself, needs to go around with a smile and nothing but positive things to say, that is not only absurd and ridiculous but it will eventually backfire and leave you feeling even worse later. I am only suggesting to slow down, enjoy what you enjoy, no one can do it all at once. All those things you didn't get to will still be there tomorrow, and who knows, perhaps the extra time will make doing what ever it is that much easier later.
I hope everyone is having a wonderful Monday!
Monday, September 26, 2011
Tuesday, September 20, 2011
Another great article about mesothelioma from Allison Kahan
So I must be on a roll today, getting to all those things that I have been neglecting.
I used to work for a municipal water department where we often dealt with asbestos concrete water pipes (yes your water most likely travels through an asbestos pipe, makes you feel all warm and fuzzy inside doesn't it) so I always had concerns about asbestos. We had to suit up in these white suits to handle the pipe and always keep it wet so the little particles didn't become airborne and float into our lungs.
This is a great resource and article written by Allison Kahan from Asbestos.com regarding mesothelioma, cancer, nutrition and other therapies that help than just the "chemo" "radiation" route. These are important to us not only for our direct health benefits, but also important for our mental and spiritual health too which plays a huge role in our recovery and fight against cancer.
I hope you enjoy. Here is the link to Asbestos.com for you to peruse.
Here is Allison's article, I hope you enjoy it and find it informative.
I used to work for a municipal water department where we often dealt with asbestos concrete water pipes (yes your water most likely travels through an asbestos pipe, makes you feel all warm and fuzzy inside doesn't it) so I always had concerns about asbestos. We had to suit up in these white suits to handle the pipe and always keep it wet so the little particles didn't become airborne and float into our lungs.
This is a great resource and article written by Allison Kahan from Asbestos.com regarding mesothelioma, cancer, nutrition and other therapies that help than just the "chemo" "radiation" route. These are important to us not only for our direct health benefits, but also important for our mental and spiritual health too which plays a huge role in our recovery and fight against cancer.
I hope you enjoy. Here is the link to Asbestos.com for you to peruse.
Here is Allison's article, I hope you enjoy it and find it informative.
When Laura asked us to contribute a blog for her website I was more than excited! Laura’s story is extremely inspiring! I’d like to start this blog entry by congratulating her on such an impressive and miraculous victory against cancer! Laura, you are a fighter! But, most of all, you are a survivor!
Cancer comes in many forms, stages, and sizes but some things are the same throughout - the experiences endured are scary and life changing. Some say it’s situations like this in life that really open our eyes and make us appreciate everything even more than before. In her “About Me” section that states, Laura asks “Why is it that only when we are faced with death that we truly begin to live?”
Laura was able to beat her battle against cancer by going back to the basics. She turned her life around by eating organic, non-processed foods; taking supplements; exercising; and focusing on being as healthy as possible. Alternative therapies are beneficial in coping with all kinds of cancer, not just liver/bile duct cancer like Laura. Mesothelioma, another rare kind of cancer, has also been known to use alternative therapies to help with the pain and general health associated with this cancer.
Different forms of alterative therapy include:
· Acupuncture
· Aromatherapy
· Chiropractic care
· Massage
· Meditation
· Yoga
· Supplements
· Pet Therapy
· Tens Therapy
Many times, acupuncture and massage are used for mesothelioma patients as “complimentary medicine.” This kind of medicine is used more to treat the entire person as a whole and not just one problem. It’s a routine of different therapies that hopefully in combination with one another will help heal the condition at hand. This is very much like what Laura did to help her body fight against cancer. Lifestyle changes are becoming even more imperative than just taking medicine and hoping you will get better. Many doctors are now encouraging their patients to try this type of healing in hopes that it will help in conjunction with the medicines they provide.
Nutrition is not only important for the average person but even more beneficial for cancer patients. In some cases, nutrition can help improve a patient’s prognosis. This is not always easy in light of the nausea associated with chemotherapy treatments and/or surgeries. High protein, nutrient-dense diets are best for mesothelioma patients; they should avoid highly processed foods with sugar and preservatives. Additionally, taking supplements are also a great addition to the altered food choices. A few of the most important supplements include vitamins, minerals, herbs and amino acids. Ginseng, flaxseed, garlic, grape seed extract and St. Johns Wort are a few of the most popular forms of supplements used.
Exercise and Cancer: A great article written by David Haas
I must say I have had this article for a few months now, meaning to post it but just either forgetting to or having so much going on in my life that I didn't. Today is the day!
A blogger friend sent this to me and it is so very true and actually a great resource for those who are struggling with cancer. I want to also say that I know first hand that it is hard to always get exercise, especially when you are not feeling good from treatments etc. But it is so very important. There will always be those days when you cannot peel yourself off of the bed/sofa but that is OK. On those days where you do feel good enough to get up try to get even a little exercise. Go for a walk, do a little yard work or house work. Even the smallest of things can get your body moving and feeling good or at least a little better.
And for those of you out there who haven't been diagnosed, exercise is just as important! It helps prevent cancers or at least keeps you healthy so that your body is able to fight it off. Keeping ourselves as healthy as possible (cancer or no cancer) is oh so important to our overall health.
I hope you enjoy this article as much as I did. Kudos to you David and thank you for sharing this important piece of information with us all! I have also posted a link to David's blog for you to enjoy.
A blogger friend sent this to me and it is so very true and actually a great resource for those who are struggling with cancer. I want to also say that I know first hand that it is hard to always get exercise, especially when you are not feeling good from treatments etc. But it is so very important. There will always be those days when you cannot peel yourself off of the bed/sofa but that is OK. On those days where you do feel good enough to get up try to get even a little exercise. Go for a walk, do a little yard work or house work. Even the smallest of things can get your body moving and feeling good or at least a little better.
And for those of you out there who haven't been diagnosed, exercise is just as important! It helps prevent cancers or at least keeps you healthy so that your body is able to fight it off. Keeping ourselves as healthy as possible (cancer or no cancer) is oh so important to our overall health.
I hope you enjoy this article as much as I did. Kudos to you David and thank you for sharing this important piece of information with us all! I have also posted a link to David's blog for you to enjoy.
The Power of Fitness
According to research presented by the National Association of Physical Activity and Health, an active lifestyle may prevent cancer deaths in men. Similar studies suggest the same is true for women with certain types of cancer. In fact, the American Cancer Society contends that exercise, even in small amounts, may be beneficial. As helpful as a fitness routine may be, it is not meant to be a substitute for regular cancer treatments.
Exercise may help with some of the possible side effects of some types of cancer such as lung cancer, liver cancer, breast cancer, and even a rare and usually terminal cancer such as mesothelioma. Even just walking around may prevent blood clots in the legs. Exercise may also reduce fatigue in cancer patients. Patients who exercised on a regular basis before their diagnosis should continue to do so after their diagnosis with consent from their doctor. Many doctors believe that exercise can help improve one’s life expectancy. For example, Mesothelioma life expectancy is typically 1-2 years after initial diagnosis, but some patients live five years or more from the time they were first diagnosed. A European study found a link between reducing consumption of red meat and a reduced risk of colon cancer. The study suggests a diet rich in vegetables, fruits and whole grains to reduce the risk of prostate cancer.
Some studies suggest a link between physical exercise and a lower risk of rectal and colon cancer. Exercise has also been shown to display a reduced risk of ovarian cancer in certain studies. It's hard to confirm a definite link between fitness and cancer because so many factors are involved, but several studies have found several health benefits of staying in shape or starting an exercise routine. Additional studies have found a correlation between exercise and a reduced risk of breast cancer, prostate cancer and lung cancer.
Adopting a fitness routine may also be beneficial following cancer treatment. There is significant evidence to suggest exercise may help prevent various types of cancer, but studies show a steady fitness routine may also help recovering cancer patients’ deal with the side effects of treatment. Cancer patients who have recovered may also benefit from regular exercise. Recent studies suggest a connection between regular exercise and a reduced chance of recurrence. General benefits of exercise include improved mood, increased self-confidence, reduced fatigue, lower risk of cardiovascular disease and reduced risk of diabetes. Patients should talk to their doctor before starting a regular exercise program.
Exercise may help with some of the possible side effects of some types of cancer such as lung cancer, liver cancer, breast cancer, and even a rare and usually terminal cancer such as mesothelioma. Even just walking around may prevent blood clots in the legs. Exercise may also reduce fatigue in cancer patients. Patients who exercised on a regular basis before their diagnosis should continue to do so after their diagnosis with consent from their doctor. Many doctors believe that exercise can help improve one’s life expectancy. For example, Mesothelioma life expectancy is typically 1-2 years after initial diagnosis, but some patients live five years or more from the time they were first diagnosed. A European study found a link between reducing consumption of red meat and a reduced risk of colon cancer. The study suggests a diet rich in vegetables, fruits and whole grains to reduce the risk of prostate cancer.
Some studies suggest a link between physical exercise and a lower risk of rectal and colon cancer. Exercise has also been shown to display a reduced risk of ovarian cancer in certain studies. It's hard to confirm a definite link between fitness and cancer because so many factors are involved, but several studies have found several health benefits of staying in shape or starting an exercise routine. Additional studies have found a correlation between exercise and a reduced risk of breast cancer, prostate cancer and lung cancer.
Adopting a fitness routine may also be beneficial following cancer treatment. There is significant evidence to suggest exercise may help prevent various types of cancer, but studies show a steady fitness routine may also help recovering cancer patients’ deal with the side effects of treatment. Cancer patients who have recovered may also benefit from regular exercise. Recent studies suggest a connection between regular exercise and a reduced chance of recurrence. General benefits of exercise include improved mood, increased self-confidence, reduced fatigue, lower risk of cardiovascular disease and reduced risk of diabetes. Patients should talk to their doctor before starting a regular exercise program.
Wednesday, September 14, 2011
Today is a good, good day!
Anyway, today I have an appointment at the Center for Traditional Medicine and it happens to coincide with my friend Susan's appointment and I am so excited to see her! We have kind of a "girl" day planned. After our appointments at the CTM I will be accompanying her to some more doctors appointments. That is what happens when you have cancer, always some doctors appointment, always. As a matter of fact your doctors appointments and chemo and IV's etc are what you revolve your entire life around. Someone says "Hey! What are you doing tomorrow/next Tuesday/next week/etc. and you can't really say if you are going to feel good enough to do anything, that is IF you don't actually have an appointment that day. It is strange as you watch yourself deteriorating. Your memory going south, you can no longer multi-task or even single-task because you forget that you were even doing anything at all. You are all of the sudden that "flaky" friend that gets on everyones nerves because you either forgot (chemo brain) that you had a date with someone or you didn't anticipate feeling like crap so you have to cancel. Even your partner/caregiver gets annoyed because you are not the same person you used to be...
At least if you had dementia you wouldn't know you were so flaky and that your brain is turning to mush and your emotions are all over the chart most likely in big part from the all of the drugs coursing through your body, but you also wouldn't be able to notice that you are slowly going crazy. But actually knowing and seeing yourself become this person (moody/flaky/etc) is a hard thing to handle, especially if you used to be proud of how well you could handle complex situations and your organizational skills. Gone...Now I am a moody, flaky person who somehow always is able to see some positive in even the nastiest of situations, cling to it for dear life, and make even the most trying of days in to really good ones. You have got to, otherwise you would just fall down into a deep dark bottomless hole, and climbing out of that would be even harder. I think I will chose to step around it. Maybe one day this hole will be filled in, covered up, boarded up, and "KEEP OUT!" signs placed all around. Or perhaps one day this ugly hole will fill up with flowers and those yummy smelling plants I love so much. Yeah, that is what will happen!
As a good friend of mine says, "Today is a good, good day!"
Love you Bills!
Thursday, September 1, 2011
I'm an anomaly...great! Someone told me that ALL miracles are anomalies!
Well, the appointment with my oncologist Dr Shao was a little disappointing and bubble bursting...
He is not convinced that all of the cancer in my liver is dead. His comment was that CC is super slow growing so it is not surprising that it did not show up on the PET scan. I am all in agreement that I would much rather be safe than sorry so I am continuing to get my normally scheduled chemotherapy treatments every other week (although I do have a 3 week break right now, woot!) and in 3 more months we are going to do another scan to see whats going on.
In the meantime, I will be speaking with all 3 oncologists to see why each one has a differing opinion...That will be interesting.
So I guess that that piece of paper from the official PET scan report that said "IN REMISSION" was just a teaser after all....It is NOT official yet....But in my mind I KNOW that I am kicking some cancer ass. Just because they have never seen anyone react so positively before and just because NO ONE has ever cured themselves from stage IV INCURABLE, INOPERABLE cholangiocarcinoma, my job has suddenly gotten a lot harder. Not only now do I have to kick cancer ass, but I also have to convince the medical world that it can be done.
I've got a message for them and for stupid cancer.
I AM JUST THE WOMAN FOR THE JOB!
...so some (most) believe it can't be done, that is my motivation to prove them wrong
My mom knows this well enough...
If you want me to do something, DON'T keep asking me to do it
LIKEWISE
If someone tells me 1 million and one reasons why I can't/shouldn't/it wont work/you'll never make it/etc then you are damn straight that I will make it my personal mission to prove them wrong. This is no exception.
Like I have said before,
Cancer Can Suck It!
...and by the way, it has been quite the emotional roller coaster hasn't it?
He is not convinced that all of the cancer in my liver is dead. His comment was that CC is super slow growing so it is not surprising that it did not show up on the PET scan. I am all in agreement that I would much rather be safe than sorry so I am continuing to get my normally scheduled chemotherapy treatments every other week (although I do have a 3 week break right now, woot!) and in 3 more months we are going to do another scan to see whats going on.
In the meantime, I will be speaking with all 3 oncologists to see why each one has a differing opinion...That will be interesting.
So I guess that that piece of paper from the official PET scan report that said "IN REMISSION" was just a teaser after all....It is NOT official yet....But in my mind I KNOW that I am kicking some cancer ass. Just because they have never seen anyone react so positively before and just because NO ONE has ever cured themselves from stage IV INCURABLE, INOPERABLE cholangiocarcinoma, my job has suddenly gotten a lot harder. Not only now do I have to kick cancer ass, but I also have to convince the medical world that it can be done.
I've got a message for them and for stupid cancer.
I AM JUST THE WOMAN FOR THE JOB!
...so some (most) believe it can't be done, that is my motivation to prove them wrong
My mom knows this well enough...
If you want me to do something, DON'T keep asking me to do it
LIKEWISE
If someone tells me 1 million and one reasons why I can't/shouldn't/it wont work/you'll never make it/etc then you are damn straight that I will make it my personal mission to prove them wrong. This is no exception.
Like I have said before,
Cancer Can Suck It!
...and by the way, it has been quite the emotional roller coaster hasn't it?
Tuesday, August 30, 2011
CANCER CAN SUCK IT!
I am going to write a more lengthy post about this a little later this week but for now I just have to share my news to those of you who may not have heard yet.
After my appointment with Dr Perkins the surgical oncologist on Monday I had another PET scan on Wednesday and an appointment with a radiological oncologist named Dr Jason Bauer who was planning to administer Yttrium-90 direct radiation beads the size of a grain of sand through a catheter, about the size of a human hair, inserted into my groin and threaded through veins and such into my liver.
He came into the exam room, introduced himself and immediately began complementing me on how great and healthy I looked in spite of having extensive and aggressive stage IV cholangiocarcinoma. He commented that he was close in age to me as well as Dr Perkins (the surgical onc). He was basically in awe.
Then it happened. He got all serious and told me that he really wished he could help me with his miracle treatment but he just can't. The reason he can't is because the PET scan (this makes the only one I have had since my first diagnosis last March 24, 2010, yes that's right LAST YEAR) shows that I have
After my appointment with Dr Perkins the surgical oncologist on Monday I had another PET scan on Wednesday and an appointment with a radiological oncologist named Dr Jason Bauer who was planning to administer Yttrium-90 direct radiation beads the size of a grain of sand through a catheter, about the size of a human hair, inserted into my groin and threaded through veins and such into my liver.
He came into the exam room, introduced himself and immediately began complementing me on how great and healthy I looked in spite of having extensive and aggressive stage IV cholangiocarcinoma. He commented that he was close in age to me as well as Dr Perkins (the surgical onc). He was basically in awe.
Then it happened. He got all serious and told me that he really wished he could help me with his miracle treatment but he just can't. The reason he can't is because the PET scan (this makes the only one I have had since my first diagnosis last March 24, 2010, yes that's right LAST YEAR) shows that I have
NO MORE BIOLOGICALLY ACTIVE OR LIVING CANCER IN MY BODY!!!
So what does this mean??? it means that I am officially
IN REMISSION!!!
One and a half years ago I was given about 6 months to 1 year to live.
One and a half years ago I was given a 20% chance to live 5 years.
One and a half years ago my life changed forever.
My priorities became very clear.
Life became very simple yet unimaginably complicated all in the blink of an eye.
Even though it was Friday when I got this news I am still in shock. It is still sinking in.
I have my regularly scheduled chemo and appointment with my oncologist tomorrow so perhaps it will seem more official then.
I am still going to get chemo for a while to make sure all those bastards are completely fried and that there isn't one little cell that is still clinging to life to turn into full blown tumors again.
The reason they haven't found this out yet is because they haven't done a PET scan, they figured they didn't need to...the cancer most likely hasn't spread due to the nature of CC and the CT scans showed that they were always shrinking AND no one and I mean NO ONE just cures themselves of severe cholangiocarcinoma EVER and especially in 1.5 YEARS!!!
Everyone is flabergasted, floored and shocked. They all want to know "What did you do?".
I told them, you all know what I've been doing. Eating right (no chemicals, no processed foods, organic always, limiting or eliminating all together dairy, and animal proteins, juicing) taking supplements and vitamins, getting nutritional IV's, getting exercise as much as possible when I feel good, HAVING A POSITIVE ATTITUDE, not meaning I am always happy, meaning I always try to find something good, some positive in every situation no matter how crappy it is and how hopeless it feels and how alone and abandoned and scared you are and no matter how it seems and feels like the ENTIRE UNIVERSE is conspiring to your disadvantage, and no matter how much I sometimes HURT both physically, emotionally, mentally, spiritually, etc I just never EVER gave up, EVER!
I also have an amazing support network, very loving friends and family, kick ass, state of the art, cutting edge doctors on my side.
I made these changes in less than a month. I didn't have the time or luxury to do it gradually.
More later, I LOVE you all and wish you all the happiness and health in the world.
Laura
The Cancer Assassin
Tuesday, August 23, 2011
Conversations with a surgical oncologist
Monday I had an appointment with a surgical oncologist, Dr Serene Perkins at the Good Samaritan in downtown Portland. Actually Monday was yesterday, it doesn't feel like yesterday. It feels like about a week ago. It was a little bit of an emotional day to say the least. Here is what they said.
The very first thing she said is "You are the youngest patient I have ever seen with cholangiocarcinoma." My reaction, "I haven't heard that one yet." Both of us with a giant smile on our faces. I liked her already. Not only was she pretty and reminded me of my girlfriend Karin from Seattle, but she was smiling and that, for me, is just an instant winner. If you have ever had to deal with a lot of doctors you most likely have already noticed this, or maybe it is just me, who knows, but it is a pretty rare occasion when your doctor is walking around with a giant contagious smile on her face. Especially one who's next words were something like this, "I'm going to give it to you straight (again, a woman after my own heart here) I cannot operate on your liver to remove the tumors because every lobe is affected and you wouldn't have any liver left over. BUT, there is someone I want you to talk to who is a radiation oncologist who has this new (just out of study and now available) awesome cutting edge therapy that I think you should start immediately." Wow! At first I must admit that I was disappointed. I wanted her to tell me that she could operate now and that they can remove all of the tumors and my liver will grow back in 6 weeks and everything would be awesome, that basically I would have a brand new liver! After all, I was at the surgeon's office, where they perform surgeries talking to a surgeon. Why would I think otherwise? Actually, I knew otherwise because Shao had mentioned to me that she wanted to talk radiation, but DANG IT I wanted it to be different. I knew what to expect, the meeting went pretty much exactly as I thought it would but yet I wanted it to be different. I wanted the fairy tale story book ending, where crazy miracles happen and young ladies with liver cancer magically get healed. I know that this is actually great news! That there are awesome doctors out there who are specialists in my type of disease who spend their spare time talking about me and my case wondering how they can help me the best. I'm an anomaly. People who get cholangiocarcinoma are usually much older, most often they are men, and often have other liver troubles or other diseases that have led to cholangiocarcinoma (CC, it's a long word folks:). They are not usually 38 year old, active females who has never had anything more serious than a broken arm when I was about 7 and a little bout with salmonella when I lived at Crystal Mountain back in the early to mid 90's (let's just say that little dorm fridges don't work very well at keeping chicken frozen apparently). The doctors are all very pleased with my progress. It would seem that I have been doing an unexpectedly exceptional job at assassinating those cancer cells. Dr Perkins said that I have had an amazing response to the chemotherapy and that people don't usually respond as well as I have but that the effectiveness of the chemo is reaching its end and I am already on the lowest dose possible meaning that I cannot (nor do I likely want to) have a higher dose unless I want to risk other complications such as kidney failure, bone marrow damage, permanent neurosis which I have found to be quite unpleasant and painful, and a slew of other highly undesirable physical and mental troubles. She is also very optimistic about the new treatment and suggested to me that I should begin it as soon as possible...and perhaps we will be able to talk in the future about surgery. That is what we are hoping.
The therapy....so far what I know (which isn't that much yet as I have not been scheduled to see this new doc yet) is this and it sounds scary but very effective so sign me up. As I see it (I'm always trying to find the positive in even the crappiest of situations) this is an option that wasn't even available to me a year ago, I am making progress! Now it is proven!
The treatment is called Yttrium-90 and it sounds like a good thing to me. The doctor that I will be meeting with is the only one in the city that does this treatment and he also just happens to be very highly recommended and respected by the surgical oncologist being a pioneer of this promising treatment. Yes, I said promising...
I am not going to lie or pretend to be all tough or uber-optimistic right now, I am a little bit freaked out. Catheter?! Where?!!?! Radiation actually inside my body! Crazy! Insane! Even though as crazy and insane and scary as having a catheter inserted through your pelvis into your liver so that you can feed radioactive spheres into your liver to kill cancer cells sounds the thing that scares me the most is that this actually sounds promising to me. I am becoming hopeful that this will be the thing that delivers the last punch to those rogue cells causing havok on my body and my liver! The scary part is if I get let down...we all know how it feels to be happy and hopeful about an anticipated outcome of a situation, most of us also know how it feels to be let down in such occasions and how devastating this can sometimes be. I mean, look at how much I got freaked out yesterday at expecting to have surgery (you know the happy ending where they cut it all out and my liver is happy and cancer free) instead of radiation and catheter that is uncertain, invasive and scary.
Actually I worry about being too excited or overly hoping for a certain desired outcome (of course never trusting or being fully present for the process what so ever) pinning everything on it and having it be ineffective, thus rendering me a blubbering, irrational, emotional slob for a few days/hours reminding Jeff how lucky he is to be with me...
Or better yet, I can focus on all of the positive! All of the awesome specialists and doctors and nurses I have looking out for me, talking about my case, trying to figure out what they can do to help. Instead of feeling like the situation is crappy and lame because I am the "lucky" individual who happens to get a rare form of cancer at a young age....I can see it as at least I am "lucky" enough to be young with a rare disease that catches peoples attention and, much like House, provide them with a strange and interesting puzzle that they are dying to figure out. I am "lucky" enough to have some awesome doctors on my side, my team, which happens to be comprised of specialists, natural and traditional medicine, awesome nurses and aside from all of the titles and formalities just down right good, no, AWESOME people I have working on my side, fighting for me! This is how I would rather see it. My choice is the positive. I decided long ago that I was not going to waste my time and energy on worrying about all the things I may not get to/can't do. I would rather spend that energy on doing it and making sure it will happen.
Cancer Can Suck It!
The very first thing she said is "You are the youngest patient I have ever seen with cholangiocarcinoma." My reaction, "I haven't heard that one yet." Both of us with a giant smile on our faces. I liked her already. Not only was she pretty and reminded me of my girlfriend Karin from Seattle, but she was smiling and that, for me, is just an instant winner. If you have ever had to deal with a lot of doctors you most likely have already noticed this, or maybe it is just me, who knows, but it is a pretty rare occasion when your doctor is walking around with a giant contagious smile on her face. Especially one who's next words were something like this, "I'm going to give it to you straight (again, a woman after my own heart here) I cannot operate on your liver to remove the tumors because every lobe is affected and you wouldn't have any liver left over. BUT, there is someone I want you to talk to who is a radiation oncologist who has this new (just out of study and now available) awesome cutting edge therapy that I think you should start immediately." Wow! At first I must admit that I was disappointed. I wanted her to tell me that she could operate now and that they can remove all of the tumors and my liver will grow back in 6 weeks and everything would be awesome, that basically I would have a brand new liver! After all, I was at the surgeon's office, where they perform surgeries talking to a surgeon. Why would I think otherwise? Actually, I knew otherwise because Shao had mentioned to me that she wanted to talk radiation, but DANG IT I wanted it to be different. I knew what to expect, the meeting went pretty much exactly as I thought it would but yet I wanted it to be different. I wanted the fairy tale story book ending, where crazy miracles happen and young ladies with liver cancer magically get healed. I know that this is actually great news! That there are awesome doctors out there who are specialists in my type of disease who spend their spare time talking about me and my case wondering how they can help me the best. I'm an anomaly. People who get cholangiocarcinoma are usually much older, most often they are men, and often have other liver troubles or other diseases that have led to cholangiocarcinoma (CC, it's a long word folks:). They are not usually 38 year old, active females who has never had anything more serious than a broken arm when I was about 7 and a little bout with salmonella when I lived at Crystal Mountain back in the early to mid 90's (let's just say that little dorm fridges don't work very well at keeping chicken frozen apparently). The doctors are all very pleased with my progress. It would seem that I have been doing an unexpectedly exceptional job at assassinating those cancer cells. Dr Perkins said that I have had an amazing response to the chemotherapy and that people don't usually respond as well as I have but that the effectiveness of the chemo is reaching its end and I am already on the lowest dose possible meaning that I cannot (nor do I likely want to) have a higher dose unless I want to risk other complications such as kidney failure, bone marrow damage, permanent neurosis which I have found to be quite unpleasant and painful, and a slew of other highly undesirable physical and mental troubles. She is also very optimistic about the new treatment and suggested to me that I should begin it as soon as possible...and perhaps we will be able to talk in the future about surgery. That is what we are hoping.
The therapy....so far what I know (which isn't that much yet as I have not been scheduled to see this new doc yet) is this and it sounds scary but very effective so sign me up. As I see it (I'm always trying to find the positive in even the crappiest of situations) this is an option that wasn't even available to me a year ago, I am making progress! Now it is proven!
The treatment is called Yttrium-90 and it sounds like a good thing to me. The doctor that I will be meeting with is the only one in the city that does this treatment and he also just happens to be very highly recommended and respected by the surgical oncologist being a pioneer of this promising treatment. Yes, I said promising...
I am not going to lie or pretend to be all tough or uber-optimistic right now, I am a little bit freaked out. Catheter?! Where?!!?! Radiation actually inside my body! Crazy! Insane! Even though as crazy and insane and scary as having a catheter inserted through your pelvis into your liver so that you can feed radioactive spheres into your liver to kill cancer cells sounds the thing that scares me the most is that this actually sounds promising to me. I am becoming hopeful that this will be the thing that delivers the last punch to those rogue cells causing havok on my body and my liver! The scary part is if I get let down...we all know how it feels to be happy and hopeful about an anticipated outcome of a situation, most of us also know how it feels to be let down in such occasions and how devastating this can sometimes be. I mean, look at how much I got freaked out yesterday at expecting to have surgery (you know the happy ending where they cut it all out and my liver is happy and cancer free) instead of radiation and catheter that is uncertain, invasive and scary.
Actually I worry about being too excited or overly hoping for a certain desired outcome (of course never trusting or being fully present for the process what so ever) pinning everything on it and having it be ineffective, thus rendering me a blubbering, irrational, emotional slob for a few days/hours reminding Jeff how lucky he is to be with me...
Or better yet, I can focus on all of the positive! All of the awesome specialists and doctors and nurses I have looking out for me, talking about my case, trying to figure out what they can do to help. Instead of feeling like the situation is crappy and lame because I am the "lucky" individual who happens to get a rare form of cancer at a young age....I can see it as at least I am "lucky" enough to be young with a rare disease that catches peoples attention and, much like House, provide them with a strange and interesting puzzle that they are dying to figure out. I am "lucky" enough to have some awesome doctors on my side, my team, which happens to be comprised of specialists, natural and traditional medicine, awesome nurses and aside from all of the titles and formalities just down right good, no, AWESOME people I have working on my side, fighting for me! This is how I would rather see it. My choice is the positive. I decided long ago that I was not going to waste my time and energy on worrying about all the things I may not get to/can't do. I would rather spend that energy on doing it and making sure it will happen.
Cancer Can Suck It!
Friday, August 19, 2011
Some News!
I have mostly been home for appointments, both chemotherapy and my nutritional IV's. Some sweet angel (I'm not naming names but THANK YOU SUSAN!) generously put $200 on my account at the Center for Traditional Medicine and that pays for more IV's and some vitamins that I cannot get on Amazon such as Maxiflav.
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| 9000' on Mt Hood Cooper Spur |
He has been speaking to a surgical oncologist named Dr. Serene Perkins (check her out, I've provided a link) who has become very familiar with my records and condition. She happens to be a specialist in bile duct and liver cancer as well as a transplant specialist.......hmmmm......sounds good to me!
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| Cooper Spur |
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| Awesome poppy field somewhere in northern Utah |
YOU all have been my support, my scaffolding upon which I draw my strength. You all help me out when I am penniless and in need of medication so that I can feel somewhat like a "normal" person. You give me that strength to get up the challenging rock climb and it is your voices and prayers that I hear whenever I am not certain about the future or when I am feeling like death is lurking nearby. Thank you so much!
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| In Mazama :) |
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| Awesome secret "locals" swimming hole in Moab. |
Me and my fire...I love to build a campfire! We cooked sweet potatoes and fresh corn roasted in the husks for dinner this night. Who says road food has to be bad food? You just have to be creative!
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| Stoic Clark at the beach. |
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| The BEST (and maybe only) thrift store in Moab! |
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| Joe Wilson Arch |
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| On the rail to Cooper Spur |
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| The awesome Mr Stewart and me |
Jeff and I also spent a week up in Mazama near Winthrop and Twisp, WA. It was beautiful and we had the campground to ourselves for 3 or 4 out of 5 or 6 days we were there! It was climbing heaven! It was also so peaceful and beautiful! The little swing I found out in the middle of the woods near a trailhead. I expected to see fairies! |
| Strong and Healthy! |
There are days that I feel like doing nothing at all, days I don't have the energy to even make food for myself or get up long enough to do just about anything. Then there are those days that I feel great! On those days I get out and take it all in, the smells, sights and sounds. I want to hold it close and never, ever forget it.
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