Yesterday I went to visit the Oncologist for the first time since my Mastectomy surgery. When the Dr. called with my Oncotype test results I let them know that I was probably not interested in having chemotherapy. Although the Surgeons office sent at least one referral to their office, the Oncologist did not attempt to contact me. At my family physicians request I finally contacted them.
I was not surprised but disappointed at the reception I received at the Oncologists office. In speaking to him, he made it clear that he did not like that I had accepted to have the Oncotype test but did not follow through with chemotherapy. I understand that these are expensive tests used to determine the effectiveness of chemotherapy but it does not say anywhere that by accepting to have that test done that one is required to follow through with suggested therapies. In fact, it seems that it is a TOOL to help one decide what is most effective. While I didn't follow through, I don't feel like this was by any means a wasted test, the information is still informative is it not??
I was also disappointed that the Oncologist did not know anything about a local woman who treats cancer patients as a dietitian. He should have nother to fear as she does NOT advocate avoidance of traditional treatments, in fact she encourages patients to use diet as an adjuvant therapy. Diet in addition to chemo or radiation or whatever the Oncologist suggests. Jeanne Wallace is her name and she lives and works in North Logan just a couple of miles from the cancer center. Because her practice is online she works with and helps cancer patients all over the country. She also speaks at cancer conventions all over the country. How can the local "authority" on cancer treatment not know anything about her or her work?? It seems ludicrous to me. It is common treatment to ease the discomforts of chemotherapy with the modification of diet. And there are so many studies out there that validate the use of nutrients found in many foods in the actual treatment of cancer. Don't even get me started on the fact that NO ONE in the medical profession has even talked about diet or what I am doing or trying to do.
It was offensive to me, that while the Doctor used a kind tone of voice and acted like he would look into the use of vitamin D3 or Calcitrol in the treatment of breast cancer (he claimed to have never heard anything of the sort) his body language said something entirely different. An eye roll and a smirk made me feel like walking out the door. Once at home, I was able to pull up several references to vitamin D and breast cancer treatment by just typing it in on Google, and several more on youtube. Here are a couple links. http://www.ncbi.nlm.nih.gov/pubmed/20156557 http://www.youtube.com/watch?v=ee21LVO8T9A
It is odd that the Dr. is well aware of my hesitation to use pharmacology to treat my breast cancer and yet has nothing else to offer. I understand that his study focuses mainly on pharmacology but that is not his title it is "Oncologist" which would lead one to believe he studies or studied cancer cells in many different aspects and relationships not just the relationship with drugs. I have read that Oncologists receive money from drug companies for prescribing chemotherapy. I hoped our local guy did not buy into this scheme but now I wonder. Here is a link from a reputable source, the American Caner Society. How can anyone trust this kind of behavior in a potentially life/death situation for the patient?? http://csn.cancer.org/node/139409
After a discouraging and frustrating appointment I realize that I have to continue to trust God and the guidance he has given me. I am so grateful for the relationship I have with Him. I know He gave me the initial desire to forgo the chemotherapy treatment. Even after diagnosis I never imagined this would be the path I would take, but the guidance I have received from the Lord has been undeniable. I don't know what will happen. Even with faith that I am on the right path, that doesn't necessarily mean I won't still have struggles with this.
Which reminds me, yesterday the Oncologist asked how I came to the decision to not follow through with chemotherapy, and then brushed off my answer. I distinctly told him it was by faith that I made the decision and that I trust in Heavenly guidance. He repeated it back as a "gut" feeling. It was NOT just a gut feeling. I can accept his denial of a higher power but it is offensive to have my faith down graded to guts.
I know there I have a loving Father in Heaven who listens to my prayers and answers them. I have also experienced when the answer isn't what I would expect or necessarily want. Just last year when we lost our baby, I experienced a different outcome than I would have wanted. But I know He works in mysterious ways and that my "ways are not His ways." I trust in Him and know that while everything may not turn out just the way I want, I will by guided and watched over and even carried in all the difficult things I face. Jesus Christ is my friend, my brother and my Savior. I will follow Him.
Wednesday, October 17, 2012
Thursday, October 11, 2012
Oncotype DX
I am gearing up for my first visit with the Oncologist since my initial surgery to remove the tumors from my breast. I am a bit anxious about this visit particularly since the last conversation I had with the doctor was over the phone to review the results of the Oncotype DX test. I know that the Dr. feels strongly about recommending chemotherapy along with Tamoxifen to treat the cancer and I am likely to have to defend my choice not to go through with those treatments.
As I understand it, the Oncotype DX is a test that closely looks at the individual breast tissue sample and analyzes 21 different genes from the sample. The tests are done three times on the tissue to insure a consistent result. The lab then returns a document to the doctor with an analysis of the individual cancer cells and genes and the likelyhood that the cancer is agressive and unpredictable enough to predict a recurrance. The scores are a number from 0 to 100. The test is used to determine whether chemotherapy should be a recommended course of action for the individual patient. Only those with a score lower than 31 get a "maybe not" and even those are subjective. Any score 31 or over gets a strong push for chemotherapy.
The score I believe, is a rate of recurrence that only applies to the next 5 to 7 years. After that, the test has little predictability. My personal feelings are that while it is very useful to know a "prediction" of recurrence, it is a little overboard to rate any score 31 or higher as "high" and those in between 17 and 31 as "medium" and only those 17 and lower as "low" risk. I wish they would leave the determination to the patient. For me maybe only 75 or higher should be considered "high" and for someone else maybe anything over 20 is "high".
So what am I personally doing with this information? Well, first of all, I am trying not to let it scare me into making any rash decisions. I have realized that deciding not to follow through with chemotherapy is a decision not made once, but over and over. I have to take charge of my treatment. I have to make the choice over and over everyday in what I eat, and what I expose myself to. My number by the way, is a 48. So I suppose I have a 48% chance that I will have a recurrence in the next 5 to 7 years. If I do experience a recurrence, the data shows that it will be more aggressive at that point and difficult to treat. It is a challenge to repeatedly accept that information and to accept responsibility to live in a way to allow my body to create an atmosphere where it will have what it needs to fight off that 48% chance.
I have repeatedly felt through the Spirit of God, that my choice to follow the alternative path to chemotherapy is the right one for me. It makes it much easier to cope with the anxiety and fear brought on by the medical community that I am not making the best choice, but doesn't eliminate it. I still have "what if" moments. Most of all of course is, "what if I have a recurrence in 5 years and have to face death and leaving my family behind?" In a way I guess that inspires me to live my life more thoughtfully. I am inspired to be more present for my family, to do more to make each day count and meaningful. I trust in the Lord above all. I am sure that even if the "what ifs" come to pass that I am following the path the Lord wants me to take right now. There is peace in that at least.
As I understand it, the Oncotype DX is a test that closely looks at the individual breast tissue sample and analyzes 21 different genes from the sample. The tests are done three times on the tissue to insure a consistent result. The lab then returns a document to the doctor with an analysis of the individual cancer cells and genes and the likelyhood that the cancer is agressive and unpredictable enough to predict a recurrance. The scores are a number from 0 to 100. The test is used to determine whether chemotherapy should be a recommended course of action for the individual patient. Only those with a score lower than 31 get a "maybe not" and even those are subjective. Any score 31 or over gets a strong push for chemotherapy.
The score I believe, is a rate of recurrence that only applies to the next 5 to 7 years. After that, the test has little predictability. My personal feelings are that while it is very useful to know a "prediction" of recurrence, it is a little overboard to rate any score 31 or higher as "high" and those in between 17 and 31 as "medium" and only those 17 and lower as "low" risk. I wish they would leave the determination to the patient. For me maybe only 75 or higher should be considered "high" and for someone else maybe anything over 20 is "high".
So what am I personally doing with this information? Well, first of all, I am trying not to let it scare me into making any rash decisions. I have realized that deciding not to follow through with chemotherapy is a decision not made once, but over and over. I have to take charge of my treatment. I have to make the choice over and over everyday in what I eat, and what I expose myself to. My number by the way, is a 48. So I suppose I have a 48% chance that I will have a recurrence in the next 5 to 7 years. If I do experience a recurrence, the data shows that it will be more aggressive at that point and difficult to treat. It is a challenge to repeatedly accept that information and to accept responsibility to live in a way to allow my body to create an atmosphere where it will have what it needs to fight off that 48% chance.
I have repeatedly felt through the Spirit of God, that my choice to follow the alternative path to chemotherapy is the right one for me. It makes it much easier to cope with the anxiety and fear brought on by the medical community that I am not making the best choice, but doesn't eliminate it. I still have "what if" moments. Most of all of course is, "what if I have a recurrence in 5 years and have to face death and leaving my family behind?" In a way I guess that inspires me to live my life more thoughtfully. I am inspired to be more present for my family, to do more to make each day count and meaningful. I trust in the Lord above all. I am sure that even if the "what ifs" come to pass that I am following the path the Lord wants me to take right now. There is peace in that at least.
Sunday, October 7, 2012
The past two days I have spent enjoying the General Conference of the Church of Jesus Christ of Latter Day Saints. What a blessing the conferences of the Church are to me! I always feel the Spirit of God confirm my beliefs and strengthen them. I learn ways to be a better person, to love and serve others, and to come closer to God. I also invariably feel peace and comfort in the trials I happen to be experiencing.
I have been a little bit nervous about the coming of conference since I have had trying experiences shortly after the past two conferences. Last Spring I discovered the lump in my breast that was later diagnosed as cancer just the night before General Conference. Last October we discovered our baby's heart was no longer beating just a little more than a week after conference. I would by lying if I didn't say that I was a bit worried about what this conference could bring.
Luckily, right now I feel at peace. I'm confident that even if some difficult thing does pop up in the next couple of weeks, I know the Lord will help me through it. So today I will just enjoy the many blessings that are mine. I have three wonderful growing boys to love and try to guide and teach. I have an amazing husband who continues to love, serve and support me each and every day. We live in a beautiful home that grounds us through my husband's family as it originally belonged to his maternal grandparents. We live in a wonderful community full of people who are good and kind and caring. I am blessed each day more than I can count.
I have been a little bit nervous about the coming of conference since I have had trying experiences shortly after the past two conferences. Last Spring I discovered the lump in my breast that was later diagnosed as cancer just the night before General Conference. Last October we discovered our baby's heart was no longer beating just a little more than a week after conference. I would by lying if I didn't say that I was a bit worried about what this conference could bring.
Luckily, right now I feel at peace. I'm confident that even if some difficult thing does pop up in the next couple of weeks, I know the Lord will help me through it. So today I will just enjoy the many blessings that are mine. I have three wonderful growing boys to love and try to guide and teach. I have an amazing husband who continues to love, serve and support me each and every day. We live in a beautiful home that grounds us through my husband's family as it originally belonged to his maternal grandparents. We live in a wonderful community full of people who are good and kind and caring. I am blessed each day more than I can count.
Sunday, September 30, 2012
Fall
I really love fall except that it leads into winter. We went to Park City this weekend and the fall colors are beautiful! Wish I had the means to stay there for a week or so to fully appreciate this time of year.
I sure love my little family too. I am very blessed!
I sure love my little family too. I am very blessed!
Tuesday, September 25, 2012
Colors of Cancer
Cancer changes life in every aspect in small increments. It's not like I am constantly thinking about it or worrying about it, but still it is there. Behind every every thought there is a shadow. The shadow doesn't direct the thoughts but rather colors them. For example, everything that has to do with my children is tainted with the color blue. Blue because of my worry that I'm not involved enough with them right now. Blue becuase I worry about what will happen to them if at some point the cancer actually kills me. Blue becuase I hope they experience calm, and peace, with or without me. Blue like a gentle, soothing ocean wave. They are my purpose right now, beyond the day to day; my eternal purpose for being here at all.
Everything about my health is red. Red I suppose for ANXIETY. I wonder if I will ever have a stomach ache, or any minor health condition without my first response being, "is it cancer?" Irrational? Absolutely. I'm working on that, telling myself it is irrational and dramatic, but I am no where near conquering it yet.
Anything physical at this point is of course colored with cancer. Particularly since my entire upper body is affected in some way by the surgeries. I hope that will go away before too long. It's purple. Purple for scar tissue, and angry wounds. As these heal, I hope to get back to my regular workouts soon and physical activity will become just plain white.
What I eat is overwhelmingly colored by cancer because it has become my choice of treatment. I try to think of it as green. Green for growth, cleansing, and life. Sweets are now taboo because of the cancer, and I am constantly working on refining my diet to be better and healthier for me. Every meal, every snack, everything I put in my mouth is directed by my choice of treating my cancer.
Dreams are not a good color right now. Kind of shadowy grey and black. I think because the shadow cancer thoughts bother me when concious, so when I'm sleeping they become bigger and darker than they really are. I hope that by acknowledging the thoughts in the day, the dark dreams will become light again.
Spirituality and my relationship with God is also affected. I hope for the better because I am trying to rely on Him. I will admit that even though I know I need Him more, there are days I am a bit pouty and don't reach out to Him. Lucky for me, I know He is always there ready to embrace me, whenever I come around. He is forever gracious and patient with me and I know that. I can't even begin to imagine how I would face this without knowing that I have a Loving Father in Heaven. I hesitate to let my feelings for Him get too close to the surface, for fear that I will be in a state of constant teariness. That is SO dramatically different from my pre-cancer self.
Friends and relationships are gold. So precious. I hope those close to me realize how grateful and blessed I feel for the geniune, loving people in my life. Relationships were a treasure for me before cancer, but they are much more tender now. I still don't know how to show it very well, and am terribly awkward at times particularly with physical expressions of love. I still don't want to be hugged much but I'm getting used to it.
So, while it is not all bad, cancer has become a part of me. If the Doctors never find another cancerous cell in my body, (and I truly hope they don't) it will still be a part of my life. I just hope it eventually becomes a small part, and that it fades to one neutral, bland color!
Everything about my health is red. Red I suppose for ANXIETY. I wonder if I will ever have a stomach ache, or any minor health condition without my first response being, "is it cancer?" Irrational? Absolutely. I'm working on that, telling myself it is irrational and dramatic, but I am no where near conquering it yet.
Anything physical at this point is of course colored with cancer. Particularly since my entire upper body is affected in some way by the surgeries. I hope that will go away before too long. It's purple. Purple for scar tissue, and angry wounds. As these heal, I hope to get back to my regular workouts soon and physical activity will become just plain white.
What I eat is overwhelmingly colored by cancer because it has become my choice of treatment. I try to think of it as green. Green for growth, cleansing, and life. Sweets are now taboo because of the cancer, and I am constantly working on refining my diet to be better and healthier for me. Every meal, every snack, everything I put in my mouth is directed by my choice of treating my cancer.
Dreams are not a good color right now. Kind of shadowy grey and black. I think because the shadow cancer thoughts bother me when concious, so when I'm sleeping they become bigger and darker than they really are. I hope that by acknowledging the thoughts in the day, the dark dreams will become light again.
Spirituality and my relationship with God is also affected. I hope for the better because I am trying to rely on Him. I will admit that even though I know I need Him more, there are days I am a bit pouty and don't reach out to Him. Lucky for me, I know He is always there ready to embrace me, whenever I come around. He is forever gracious and patient with me and I know that. I can't even begin to imagine how I would face this without knowing that I have a Loving Father in Heaven. I hesitate to let my feelings for Him get too close to the surface, for fear that I will be in a state of constant teariness. That is SO dramatically different from my pre-cancer self.
Friends and relationships are gold. So precious. I hope those close to me realize how grateful and blessed I feel for the geniune, loving people in my life. Relationships were a treasure for me before cancer, but they are much more tender now. I still don't know how to show it very well, and am terribly awkward at times particularly with physical expressions of love. I still don't want to be hugged much but I'm getting used to it.
The color I don't experience is pink. Ironic maybe but I guess pink is too cliche' for me. I never have liked to be lumped in with the crowd...
Friday, September 14, 2012
10 Brothers
Our youngest son who is now 4 and a half, is a very social child and especially loves children younger than he. It was this son who in his own way took the death of our baby the hardest. He doesn't of course understand death the way we do but he remembers "Baby Johnny" in his prayers regularly. In fact one day he said specifically, "thank thee for baby Johnny, he's a good brother and I love him." His love for a brother he has not met on this earth, is very sweet. It is sometimes a little tricky for me though when he asks for another baby brother.
When I was first diagnosed with cancer, I think maybe right after we told the children, my son went to play at a friends house whose mother had just delivered a baby. In the car on the way home from the friends house he asked me, "mom, when can we have another baby Johnny?" I said, "remember, mommies a little bit sick, and I can't have any more babies." His reply to that was, "well, maybe when you die, we can get a new mom, and she can have a baby." His priority was to get that baby brother. A few weeks later he told a friend's mom, "You know what's sad? Our baby died. But know what's good? I think we can earn a new one." I'm not sure how you earn a new baby but I will do my best...
Today we were at the store where we saw a mother with twins and a baby, all of whom are younger than my son. He said, "uh, no fair! They have three babies!" And I said, "so you would like to have three babies too?" and his reply, "I wish we had 10 brothers." I tried to explain that with ten brothers he wouldn't get the one on one time with Mommy and daddy that he so enjoys. He told me, "that's okay I would play with all my brothers!", then "mom are you sure you can't have any more babies?" I asked him, "remember how I have that yucky thing that's called cancer? It would make it really hard for me to have a baby." Not to mention that I don't think I could even begin to handle raising ten brothers.
I just thought that since those are some pretty precious conversations, that I should record them, lest I forget. I love that boy!
When I was first diagnosed with cancer, I think maybe right after we told the children, my son went to play at a friends house whose mother had just delivered a baby. In the car on the way home from the friends house he asked me, "mom, when can we have another baby Johnny?" I said, "remember, mommies a little bit sick, and I can't have any more babies." His reply to that was, "well, maybe when you die, we can get a new mom, and she can have a baby." His priority was to get that baby brother. A few weeks later he told a friend's mom, "You know what's sad? Our baby died. But know what's good? I think we can earn a new one." I'm not sure how you earn a new baby but I will do my best...
Today we were at the store where we saw a mother with twins and a baby, all of whom are younger than my son. He said, "uh, no fair! They have three babies!" And I said, "so you would like to have three babies too?" and his reply, "I wish we had 10 brothers." I tried to explain that with ten brothers he wouldn't get the one on one time with Mommy and daddy that he so enjoys. He told me, "that's okay I would play with all my brothers!", then "mom are you sure you can't have any more babies?" I asked him, "remember how I have that yucky thing that's called cancer? It would make it really hard for me to have a baby." Not to mention that I don't think I could even begin to handle raising ten brothers.
I just thought that since those are some pretty precious conversations, that I should record them, lest I forget. I love that boy!
Wednesday, September 12, 2012
Troubles and Friends
So about a month ago, just before I went back to CrossFit, I started to have some numbness and dull aching in my left arm. I kind of knew what was going on, but I have been trying to ignore it. Since surgery the pain has intensified and my arm has been swelling more noticeably. At the appointment a week before surgery I asked the Plastic Surgeon about it and he wanted to blame it on CrossFit. I didn't say anything to him but I thought, yeah right, "it's what you people have done to me, not what I am doing!"
I saw the Physical Therapist yesterday, and she tested my range of motion and measured swelling. Early Lymphodema. It's basically protein buildup from reduced circulation in the lymph nodes due to the removal of lymph nodes. They have really got to come up with a better way of testing those things than taking them out! One would assume that with so many of those little things in our system the removal of three wouldn't be that big of a deal, but, not so. This is more discomfort than the surgery incisions. Cest la vie, I guess. I am going to take a moment and put a positive spin on this; I could have lots more to complain about that a mere arm ache right? I mean I am alive and relatively pain free.
On a brighter note...Last night I was able to spend some time with some dear friends. We serve together in a volunteer church position and these women have become my sisters. I love them! We have worked together for the last three years and so they have been with me through a lot. They have patiently listened to me complain, endured being exposed to way more personal information than they would ever want, and have been a shoulder to cry on. The premise of the church responsibility is that I am supposed to be helping and serving others, when in truth, it has been a constant blessing to me personally. Maybe that's kind of what the Lord has in mind anyway, that whenever we try to serve someone else, He makes sure to bless us more than we could ever try to bless someone else.
Our "meetings" are always filled with moments of spirituality, laughter, worry for our charges and they last way longer than they should. But my sweet friends stick it through and it is always more fun than it probably should be. I know I have said it before, but I love you my dear sisters and I am so grateful to know you!
I saw the Physical Therapist yesterday, and she tested my range of motion and measured swelling. Early Lymphodema. It's basically protein buildup from reduced circulation in the lymph nodes due to the removal of lymph nodes. They have really got to come up with a better way of testing those things than taking them out! One would assume that with so many of those little things in our system the removal of three wouldn't be that big of a deal, but, not so. This is more discomfort than the surgery incisions. Cest la vie, I guess. I am going to take a moment and put a positive spin on this; I could have lots more to complain about that a mere arm ache right? I mean I am alive and relatively pain free.
On a brighter note...Last night I was able to spend some time with some dear friends. We serve together in a volunteer church position and these women have become my sisters. I love them! We have worked together for the last three years and so they have been with me through a lot. They have patiently listened to me complain, endured being exposed to way more personal information than they would ever want, and have been a shoulder to cry on. The premise of the church responsibility is that I am supposed to be helping and serving others, when in truth, it has been a constant blessing to me personally. Maybe that's kind of what the Lord has in mind anyway, that whenever we try to serve someone else, He makes sure to bless us more than we could ever try to bless someone else.
Our "meetings" are always filled with moments of spirituality, laughter, worry for our charges and they last way longer than they should. But my sweet friends stick it through and it is always more fun than it probably should be. I know I have said it before, but I love you my dear sisters and I am so grateful to know you!
Saturday, September 8, 2012
Surgery
Well, yesterday I had another surgery. It really hasn't been bad this time around. I am of course a bit sore but I have much more mobility than I anticipated. Outpatient surgery is where it is at. It is so much harder to stay in the hospital. I really appreciated being able to come home and be where I feel comfortable and like I can start to heal.
This surgery was to replace the tissue expander. I had originally wanted to be able to use my own tissue for reconstruction, but after a couple of visits with the specialist at the Huntsman in Salt Lake, I came to the realization that at this time I simply don't have enough extra tissue for that. I am disappointed in that I am stuck with a foreign object in my body and that is imperfect and will eventually fail. Seriously has anyone read the info the FDA puts out on silicone breast implants? It is amazing that women choose to put these things in their bodies for cosmetic purposes, though that's what I'm doing right?
I have had yet another drug reaction. I'm sure that my body is not reacting so much to the medications as it is to the implant. Since May when I first got an implant I have had allergic reactions to six different drugs. Six! I know my body is hypersensitive anyway, but I truly believe that having an implant in my body has magnified that sensitivity. It stinks. But there's not much I can do but to say no to the drugs.
This surgery was to replace the tissue expander. I had originally wanted to be able to use my own tissue for reconstruction, but after a couple of visits with the specialist at the Huntsman in Salt Lake, I came to the realization that at this time I simply don't have enough extra tissue for that. I am disappointed in that I am stuck with a foreign object in my body and that is imperfect and will eventually fail. Seriously has anyone read the info the FDA puts out on silicone breast implants? It is amazing that women choose to put these things in their bodies for cosmetic purposes, though that's what I'm doing right?
I have had yet another drug reaction. I'm sure that my body is not reacting so much to the medications as it is to the implant. Since May when I first got an implant I have had allergic reactions to six different drugs. Six! I know my body is hypersensitive anyway, but I truly believe that having an implant in my body has magnified that sensitivity. It stinks. But there's not much I can do but to say no to the drugs.
Monday, September 3, 2012
Stop It!
I want to be clear that I do not judge anyone for going through with the prescribed cancer treatments of cut, poison, burn. I know as well as anyone that what works for one person may not work for another. I totally support those who do what they feel is best, WHATEVER that may be. Even someone my exact age, with the exact same qualities of cancer that I have, will have a different experience than what I am having. I fully support and respect women with breast cancer who choose to take a different path.
I was recently reading a forum on breastcancer.org and was sad to read negative comments directed at women who made different choices. Women were berated for their choice of Doctor, their choice of reconstruction and definitely the choice of natural treatments. How sad is that! We should be a team willing to work together to support each other since we of all people should know how much it is needed.
I love a quote from a talk Elder Uchtdorf gave on mercy. Speaking of what we should do when we find ourselves judging others he said,
I was recently reading a forum on breastcancer.org and was sad to read negative comments directed at women who made different choices. Women were berated for their choice of Doctor, their choice of reconstruction and definitely the choice of natural treatments. How sad is that! We should be a team willing to work together to support each other since we of all people should know how much it is needed.
I love a quote from a talk Elder Uchtdorf gave on mercy. Speaking of what we should do when we find ourselves judging others he said,
"Stop it!"
"It’s that simple. We simply have to stop judging others and replace judgmental thoughts and feelings with a heart full of love for God and His children. God is our Father. We are His children. We are all brothers and sisters. I don’t know exactly how to articulate this point of not judging others with sufficient eloquence, passion, and persuasion to make it stick. I can quote scripture, I can try to expound doctrine, and I will even quote a bumper sticker I recently saw. It was attached to the back of a car whose driver appeared to be a little rough around the edges, but the words on the sticker taught an insightful lesson. It read, “Don’t judge me because I sin differently than you.”
We must recognize that we are all imperfect—that we are beggars before God. Haven’t we all, at one time or another, meekly approached the mercy seat and pleaded for grace? Haven’t we wished with all the energy of our souls for mercy—to be forgiven for the mistakes we have made and the sins we have committed?
Because we all depend on the mercy of God, how can we deny to others any measure of the grace we so desperately desire for ourselves? My beloved brothers and sisters, should we not forgive as we wish to be forgiven?"
Wouldn't the world be a better place if, when we found ourselves thinking ill of someone else for whatever reason, we would just "Stop It!"?
Sunday, September 2, 2012
Tough Cookies
Don't think for a minute that someone who chooses not to do chemotherapy is taking the easy way out. Even with a firm conviction that chemotherapy isn't for you, there are still moments of what if..., and there isn't a lot of support for that decision. Everyone from the doctors down to family members question your decision. You almost have to have nerves of steel to repeatedly asnwer the question, "why on earth are you choosing this?" And even those who don't ask the question right out, look at you with a look that tells you they think you are a nut job. It takes a certain amount of inner strenghth to follow through with a choice that doesn't follow medical protocal.
I have learned to seriously question the routines and procedures of the medical community beyond just the chemotherapy issue. I used to think that often doctors have no idea how to evaluate certain issues and even less of an idea of how to treat them, other than to throw some kind of medicine at it. Now I know that is the way it works. I have learned that it is my job to come to a doctor's appointment prepared with what I think is happening in my body and an idea of how I want to go about treating it. This is not to say that I don't appreciate doctors and what they do; I know they are tremendously valuable to society. But I also know they have been limited by the current system.
I know it sounds like a conspiracy theory, but I do think that the medical community is presently dominated and controlled by Big Pharmaceuticals. The drug companies are behind the research that educates the doctors who end up prescribing patented and expensive pharmaceuticals that are marketed directly to the public through constant marketing campaigns. Does anyone else see a problem with a product that is advertised on television and then must be prescribed by your local physician who is educated by the company who advertises that product? What would we think if the makers of the Big Mac advertised big juicy burgers as health food and then "educated" your doctor to tell you NEEDED a Big Mac to control your appetite for junk food and gave you a slip of paper with a prescribed diet of Big Macs? Would we not stop to question that? Why do we just take the slip of paper and head over to the pharmacy without stopping to ask, "isn't there another way?"
I believe our bodies are amazing things created by a loving Father in Heaven. I believe he made these bodies in a way that given the proper environment, can overcome many things. I also believe that our bodies are engineered to eventually fail. That's where science and physicians should come in; not before. So in some ways my body has hit that failing point; cancer. So why don't I take hold of everything medicine has to offer to help with that failing? In my position, it is because I don't feel like the research shows that it is not scientifically sound. I am 100% likely to experience side effects of treatment, including a very small possibility resulting in death, and have only a vague, unpredictable percentage of being healed or cured. For me it is way too UNpredictable. Yet this is the standard of care simply because we lack something better; or do we?
I have learned so much from several sources about the profound effect that diet has on our systems. I am not naive enough to believe that diet changes are going to heal the world; but I do believe that western society has a lot of improving to do in the diet realm of our lives. We don't eat like our bodies were meant to be fed. Our food is so tampered with, it barely resembles the food our ancestors consumed, and in my opinion, it is taking its toll on our bodies. Just look at a group of random strangers. Puffy faces, expanding waistlines, dry, rashy skin, blemishes galore. The list goes on. Isn't it logical that in a society where food is more available than ever before in history and yet we look like we are slowly killing ourselves with it, that something is wrong?
Okay, I have rambled enough for one day. I'm not sure I meant to put all of this out there but, these are certainly thoughts that are on my mind. I don't know how my alternative to chemotherapy is going to go, but I do know that in the past I have been one of the puffy, unhealthy minions walking around oblivious. Cancer has been my wake up call to clean up my life and environment and hopefully clean up my health. I am taking steps to treat my body more like it was intended to be treated. Hopefully, fifteen or twenty years from now I will be able to say it is working.
I have learned to seriously question the routines and procedures of the medical community beyond just the chemotherapy issue. I used to think that often doctors have no idea how to evaluate certain issues and even less of an idea of how to treat them, other than to throw some kind of medicine at it. Now I know that is the way it works. I have learned that it is my job to come to a doctor's appointment prepared with what I think is happening in my body and an idea of how I want to go about treating it. This is not to say that I don't appreciate doctors and what they do; I know they are tremendously valuable to society. But I also know they have been limited by the current system.
I know it sounds like a conspiracy theory, but I do think that the medical community is presently dominated and controlled by Big Pharmaceuticals. The drug companies are behind the research that educates the doctors who end up prescribing patented and expensive pharmaceuticals that are marketed directly to the public through constant marketing campaigns. Does anyone else see a problem with a product that is advertised on television and then must be prescribed by your local physician who is educated by the company who advertises that product? What would we think if the makers of the Big Mac advertised big juicy burgers as health food and then "educated" your doctor to tell you NEEDED a Big Mac to control your appetite for junk food and gave you a slip of paper with a prescribed diet of Big Macs? Would we not stop to question that? Why do we just take the slip of paper and head over to the pharmacy without stopping to ask, "isn't there another way?"
I believe our bodies are amazing things created by a loving Father in Heaven. I believe he made these bodies in a way that given the proper environment, can overcome many things. I also believe that our bodies are engineered to eventually fail. That's where science and physicians should come in; not before. So in some ways my body has hit that failing point; cancer. So why don't I take hold of everything medicine has to offer to help with that failing? In my position, it is because I don't feel like the research shows that it is not scientifically sound. I am 100% likely to experience side effects of treatment, including a very small possibility resulting in death, and have only a vague, unpredictable percentage of being healed or cured. For me it is way too UNpredictable. Yet this is the standard of care simply because we lack something better; or do we?
I have learned so much from several sources about the profound effect that diet has on our systems. I am not naive enough to believe that diet changes are going to heal the world; but I do believe that western society has a lot of improving to do in the diet realm of our lives. We don't eat like our bodies were meant to be fed. Our food is so tampered with, it barely resembles the food our ancestors consumed, and in my opinion, it is taking its toll on our bodies. Just look at a group of random strangers. Puffy faces, expanding waistlines, dry, rashy skin, blemishes galore. The list goes on. Isn't it logical that in a society where food is more available than ever before in history and yet we look like we are slowly killing ourselves with it, that something is wrong?
Okay, I have rambled enough for one day. I'm not sure I meant to put all of this out there but, these are certainly thoughts that are on my mind. I don't know how my alternative to chemotherapy is going to go, but I do know that in the past I have been one of the puffy, unhealthy minions walking around oblivious. Cancer has been my wake up call to clean up my life and environment and hopefully clean up my health. I am taking steps to treat my body more like it was intended to be treated. Hopefully, fifteen or twenty years from now I will be able to say it is working.
Thursday, August 30, 2012
Cut, Poison Burn
So after my diagnosis, I immediately started my own research via books, others with cancer, and the internet. I want to feel like I know what the best options are, and if they are available for me. It is amazing how much information is out there and yet surprising that with all of that information, the treatment of Breast Cancer is roughly the same as it was 20 or 30 years ago: Cut, Poison and Burn. The cut refers to the surgery, either mastectomy or lumpectomy depending on how much tissue is involved. Poison refers to chemotherapy, and Burn is for radiation. At the time of my diagnosis and for the month until surgery, I knew that surgery was definitely in my future, but the prescription for chemo and or radiation doesn't isn't definitive until after surgery when the Doctors can tell how far the cancer has spread. While I didn't know yet what would be prescribed for me, I wanted to know all I could learn about the treatments before surgery.
It seemed an obvious choice to travel to Salt Lake City to the Huntsman Cancer Institute to get a second opinion, especially since we live just an hour and a half away. What a beautiful and welcoming place they have there. I was impressed by the compassion shown by the nurses especially. The program there is very efficient and well run. My diagnosis was confirmed by the Surgeon there as well as the recommended surgery; a full mastectomy. After the trip down to Salt Lake, I decided to stay close to home for surgery and felt confident in the abilities of the surgeon here.
It sounds crazy but with continued research, what did not seem an obvious choice was to accept chemotherapy treatments if they were recommended. I read one study that found that chemo is least effective for women in my particular demographic: under 40, hormone positive, and HER2 negative. There are so many complications, side effects, and long term health compromises associated with chemotherapy that I felt very concerned about how it would affect me. I also read some very compelling evidence that diet has a profound effect on not only cancerous cells but on overall health. I decided to begin by altering my diet and to wait and see what treatment would be prescribed post mastectomy.
May 18th the day of surgery finally came. Things went well in the operating room and I woke feeling better than I had anticipated thanks to the drugs administered during surgery. The night in the hospital was uneventful except that I woke in the night to itchy skin that developed into hives. The morning after the surgery I was given a second dose of Percocet for the pain and the hives immediately got worse and as the nurse was going through the discharge paperwork, my throat started to swell. Two Doctors, and five nurses later, I was admitted to the ICU for observation for the allergic reaction to medication. My overall positive experience at that point took are sharp nosedive from there. The ICU was not comfortable and my new nurse was not nice and I'm sure I was the healthies person to be in ICU ever. I really didn't need to be there but I followed protocal.
It wasn't until about a month later that I was sent to see the Surgeon for a delayed post surgery follow up. He had met with the "tumor board", to discuss my follow up treatment. I was told at that point that radiation was the recommendation, so I scheduled a visit with the Radiation Oncologist. During my hospital stay and ICU visit a Doctor there had some blood work done and one of the tests indicated that I had borderline Lupus. As I discussed this with the Oncologist I learned that people with Lupus are not candidates for radiation. I was not too disappointed since due to my research, I had reservations with radiation as well. The Oncologist asked if I would at least consider chemotherapy and if the answer was yes, she thought I should have what is called an Oncotype DX test done. So off went my sample of breast tissue to a lab in California for the super expensive Oncotype DX. Two weeks later I had a test result of 48. I understand that it means I roughly have a 48% chance that there could still be some cancerous cells running free somewhere in my body ready to attack me again.
During the two weeks the test was being done, I continued my study of chemotherapy and coupled that with lots of prayer. I really felt led to certain studies, and to a holistic conference in Salt Lake City. I am generally a bit cautious about how much credence I give to information coming from sources outside of the mainstream medical community. However, what I was learning from other sources really resonated with me and made sense. One thing I have learned above any other is that in the treatment of my body I need to take the lead. No one cares more about my well being than me. I have to be as informed as I can be, try to be open minded and to make choices about my own care. I don't expect other people to understand or agree with my decisions, but I know for me, chemotherapy is not the best option. I would never have thought I would make that kind of a decision, from the outside looking in it seems a bit irresponsible. It has not been an easy decision in that it is frustrating to the Doctors and to others around me including some family members. But I feel completely at PEACE with my decision. So for me it was cut only; no poison, no burn.
It seemed an obvious choice to travel to Salt Lake City to the Huntsman Cancer Institute to get a second opinion, especially since we live just an hour and a half away. What a beautiful and welcoming place they have there. I was impressed by the compassion shown by the nurses especially. The program there is very efficient and well run. My diagnosis was confirmed by the Surgeon there as well as the recommended surgery; a full mastectomy. After the trip down to Salt Lake, I decided to stay close to home for surgery and felt confident in the abilities of the surgeon here.
It sounds crazy but with continued research, what did not seem an obvious choice was to accept chemotherapy treatments if they were recommended. I read one study that found that chemo is least effective for women in my particular demographic: under 40, hormone positive, and HER2 negative. There are so many complications, side effects, and long term health compromises associated with chemotherapy that I felt very concerned about how it would affect me. I also read some very compelling evidence that diet has a profound effect on not only cancerous cells but on overall health. I decided to begin by altering my diet and to wait and see what treatment would be prescribed post mastectomy.
May 18th the day of surgery finally came. Things went well in the operating room and I woke feeling better than I had anticipated thanks to the drugs administered during surgery. The night in the hospital was uneventful except that I woke in the night to itchy skin that developed into hives. The morning after the surgery I was given a second dose of Percocet for the pain and the hives immediately got worse and as the nurse was going through the discharge paperwork, my throat started to swell. Two Doctors, and five nurses later, I was admitted to the ICU for observation for the allergic reaction to medication. My overall positive experience at that point took are sharp nosedive from there. The ICU was not comfortable and my new nurse was not nice and I'm sure I was the healthies person to be in ICU ever. I really didn't need to be there but I followed protocal.
It wasn't until about a month later that I was sent to see the Surgeon for a delayed post surgery follow up. He had met with the "tumor board", to discuss my follow up treatment. I was told at that point that radiation was the recommendation, so I scheduled a visit with the Radiation Oncologist. During my hospital stay and ICU visit a Doctor there had some blood work done and one of the tests indicated that I had borderline Lupus. As I discussed this with the Oncologist I learned that people with Lupus are not candidates for radiation. I was not too disappointed since due to my research, I had reservations with radiation as well. The Oncologist asked if I would at least consider chemotherapy and if the answer was yes, she thought I should have what is called an Oncotype DX test done. So off went my sample of breast tissue to a lab in California for the super expensive Oncotype DX. Two weeks later I had a test result of 48. I understand that it means I roughly have a 48% chance that there could still be some cancerous cells running free somewhere in my body ready to attack me again.
During the two weeks the test was being done, I continued my study of chemotherapy and coupled that with lots of prayer. I really felt led to certain studies, and to a holistic conference in Salt Lake City. I am generally a bit cautious about how much credence I give to information coming from sources outside of the mainstream medical community. However, what I was learning from other sources really resonated with me and made sense. One thing I have learned above any other is that in the treatment of my body I need to take the lead. No one cares more about my well being than me. I have to be as informed as I can be, try to be open minded and to make choices about my own care. I don't expect other people to understand or agree with my decisions, but I know for me, chemotherapy is not the best option. I would never have thought I would make that kind of a decision, from the outside looking in it seems a bit irresponsible. It has not been an easy decision in that it is frustrating to the Doctors and to others around me including some family members. But I feel completely at PEACE with my decision. So for me it was cut only; no poison, no burn.
Thursday, August 23, 2012
A blessing called Crossfit IOTA
Two weeks after the loss of our baby I was frustrated at my bodies inability to carry our son. I was angry and needed an outlet. A friend introduced me to CrossFit and after a couple of brutal workouts I was hooked! It was just what I needed to give me something to think about, something for me to physically do that I could control, and a new group of friends to support me.
Every workout is an opportunity to push myself more than I think I can be pushed. It is a chance to see something that looks unattainable, but to try anyway and then every day to succeed. Okay, so I don't break any records and I barely survive, but I do it. I feel so empowered when I pick up a barbell and lift it over my head. When I want to quit I can push through, powered by my frustration at life. Then, instead of being a negative thing, my emotions become my catalyst. I can't change that my baby died. I can't change or control what other things life chooses to throw my way, but every day I can control whether or not I push my body to do one more rep than I think I can. It's simple but powerful. It makes me realize that I can stick with it and do something amazing, even if it only lasts six minutes.
Fast forward through some interesting months where I lost my driver's license (injustly of course), took an amazing trip with my husband, and generally tried to work through the grieving process...and I continued to enjoy the challenge of CrossFit.
The first Friday in April we did a particularly challenging workout. I can't remember what the workout was called now, but it was one with 100 pull ups. I went home with shaky arms. My chest and arms ached and that night and as I was kneading my sore muscles I noticed some lumps that felt odd. They were on the left side and not on the right; that was the part that concerned me. On Monday morning I called the Dr.and scheduled an appointment. He called the lumps suspicious and sent me for a mammogram. The Radiologist saw not lumps on the mammogram but lots of clusters of "micro-calcifications." The lumps were too far out near my armpit to show up on the mammogram but they did show up on ultrasound. Again, both things were "suspicious", and "concerning" so I was sent for some biopsies.
Waiting is the name of the game with Breast Cancer I have decided. Everything is hurry and schedule appointments and then wait for tests, wait for test results, wait for decisions. It wasn't until about the 18th of April that I got confirmation that yes, I have two types of Breast Cancer. Invasive Ductal Carcinoma and Ductal Carcinoma In Situ.
Thank goodness for CrossFit! If I hadn't been so sore from that workout, I most likely wouldn't have noticed those lumps for some time to come. Not only was I improving my health through excercise, it most likely saved my life, Amazing! My current life calls so this will be continued later...
Every workout is an opportunity to push myself more than I think I can be pushed. It is a chance to see something that looks unattainable, but to try anyway and then every day to succeed. Okay, so I don't break any records and I barely survive, but I do it. I feel so empowered when I pick up a barbell and lift it over my head. When I want to quit I can push through, powered by my frustration at life. Then, instead of being a negative thing, my emotions become my catalyst. I can't change that my baby died. I can't change or control what other things life chooses to throw my way, but every day I can control whether or not I push my body to do one more rep than I think I can. It's simple but powerful. It makes me realize that I can stick with it and do something amazing, even if it only lasts six minutes.
Fast forward through some interesting months where I lost my driver's license (injustly of course), took an amazing trip with my husband, and generally tried to work through the grieving process...and I continued to enjoy the challenge of CrossFit.
The first Friday in April we did a particularly challenging workout. I can't remember what the workout was called now, but it was one with 100 pull ups. I went home with shaky arms. My chest and arms ached and that night and as I was kneading my sore muscles I noticed some lumps that felt odd. They were on the left side and not on the right; that was the part that concerned me. On Monday morning I called the Dr.and scheduled an appointment. He called the lumps suspicious and sent me for a mammogram. The Radiologist saw not lumps on the mammogram but lots of clusters of "micro-calcifications." The lumps were too far out near my armpit to show up on the mammogram but they did show up on ultrasound. Again, both things were "suspicious", and "concerning" so I was sent for some biopsies.
Waiting is the name of the game with Breast Cancer I have decided. Everything is hurry and schedule appointments and then wait for tests, wait for test results, wait for decisions. It wasn't until about the 18th of April that I got confirmation that yes, I have two types of Breast Cancer. Invasive Ductal Carcinoma and Ductal Carcinoma In Situ.
Thank goodness for CrossFit! If I hadn't been so sore from that workout, I most likely wouldn't have noticed those lumps for some time to come. Not only was I improving my health through excercise, it most likely saved my life, Amazing! My current life calls so this will be continued later...
Wednesday, August 22, 2012
A tiny Box
I have another minute so the story continues...
So on October 15th 2011 I delivered our tiny son. We decided to name him after both of his grandfathers, John Vincent. Adult sounding names for one who will never grow old...but names that connect him to us.
After a weekend of deliberation, we decided to have a small family memorial to give closure not only for ourselves but for those closest to us who were looking forward to this new birth along with us. I didn't realize how hard it would be, seeing that tiny little box on the grass next to a tiny little hole waiting to envelope not only a physical part of me, but my hopes and dreams for that child as well. I realize that while this was extremely difficult; that it would be ten times more difficult to bury one I had spent more time with, held and snuggled. I cannot imagine how much harder it must be for a mother who has heard her childs laughter, dried his tears, and heard him call her name.
It was a beautiful little service and a sweet opportunity that my friends took to come and offer their love. I was showered with love, offers of help, shoulders to cry on and the florists delivered a garden to my door. I am amazed at the thoughtful, wonderful people who surround me and who reached out to me. My burden was not erased, but I had friends to help me carry it. I am so grateful for that.
So on October 15th 2011 I delivered our tiny son. We decided to name him after both of his grandfathers, John Vincent. Adult sounding names for one who will never grow old...but names that connect him to us.
After a weekend of deliberation, we decided to have a small family memorial to give closure not only for ourselves but for those closest to us who were looking forward to this new birth along with us. I didn't realize how hard it would be, seeing that tiny little box on the grass next to a tiny little hole waiting to envelope not only a physical part of me, but my hopes and dreams for that child as well. I realize that while this was extremely difficult; that it would be ten times more difficult to bury one I had spent more time with, held and snuggled. I cannot imagine how much harder it must be for a mother who has heard her childs laughter, dried his tears, and heard him call her name.
It was a beautiful little service and a sweet opportunity that my friends took to come and offer their love. I was showered with love, offers of help, shoulders to cry on and the florists delivered a garden to my door. I am amazed at the thoughtful, wonderful people who surround me and who reached out to me. My burden was not erased, but I had friends to help me carry it. I am so grateful for that.
True heart break
I have finally decided to sit down and start to journal the events of the past year. I am going to try to recall as best I can the things I have experienced as well as the emotions I have experienced, but since it will likely take me some time, it will take many posts. I will probably include present experiences as well but hopefully the posts will eventually link together and make sense.
A year ago I was pregnant for the sixth time. I had lost two of the previous pregnancies but things seemed to be going well with this one. At my 16 week Doctor's appointment my Doctor told me that with the strong heartbeat he heard and how well things were progressing I was down to a 1% chance of miscarriage. One night in October I woke up with an extreme headache, worse than all but one other headache in my life. It persisted through the weekend and I called the "on call" doctor and was given some pain reliever deemed safe for pregnancy. The headache continued through the next week and my blood pressure started climbing which was very rare for me. I visited my OB and while he didn't check the baby he thought everything was still ok I just needed to get the pain under control from the headache and everything else would even out. He sent me to the Immediate care clinic where they gave me a shot for the pain. It really didn't work. I decided just to wait things out until the next week when I had the 20 week ultrasound.
I was quite concerned as we went in for the ultrasound but didn't dare explore those feelings until the ultrasound tech informed us that there was no longer a heartbeat. Pregnancy is emotionally and physically difficult for me and shortly after finding out I was pregnant my husband and I decided that this pregnancy need to be my last so we choose for him to have a vasectomy. So when the ultrasound technician, (and shortly after the Dr) informed us that our baby was dead, we knew this was the end of our childbearing journey.
A few hours later I was admitted into the hospital to deliver our baby. What an emotional day and night! When the social worker came in asked if we preferred burial or cremation it brought on a whole new level of grief. In the past when I lost a baby, there was no resting place, no memorial, just broken dreams and tears. This time I actually would have a place to mourn the child that was lost to me.
A year ago I was pregnant for the sixth time. I had lost two of the previous pregnancies but things seemed to be going well with this one. At my 16 week Doctor's appointment my Doctor told me that with the strong heartbeat he heard and how well things were progressing I was down to a 1% chance of miscarriage. One night in October I woke up with an extreme headache, worse than all but one other headache in my life. It persisted through the weekend and I called the "on call" doctor and was given some pain reliever deemed safe for pregnancy. The headache continued through the next week and my blood pressure started climbing which was very rare for me. I visited my OB and while he didn't check the baby he thought everything was still ok I just needed to get the pain under control from the headache and everything else would even out. He sent me to the Immediate care clinic where they gave me a shot for the pain. It really didn't work. I decided just to wait things out until the next week when I had the 20 week ultrasound.
I was quite concerned as we went in for the ultrasound but didn't dare explore those feelings until the ultrasound tech informed us that there was no longer a heartbeat. Pregnancy is emotionally and physically difficult for me and shortly after finding out I was pregnant my husband and I decided that this pregnancy need to be my last so we choose for him to have a vasectomy. So when the ultrasound technician, (and shortly after the Dr) informed us that our baby was dead, we knew this was the end of our childbearing journey.
A few hours later I was admitted into the hospital to deliver our baby. What an emotional day and night! When the social worker came in asked if we preferred burial or cremation it brought on a whole new level of grief. In the past when I lost a baby, there was no resting place, no memorial, just broken dreams and tears. This time I actually would have a place to mourn the child that was lost to me.
Subscribe to:
Posts (Atom)