Since my last blog, it has been very busy. Lots of ideas flowing through my mind and not a lot of decisions made in the meantime. Today I did reach the decision to not have radiation because of a number of factors. The side effects was the icing on the cake but really it comes to my belief on how I will get better. After speaking to a few people, reading, and viewing, they all had the same message: the body has the ability to repair itself and you can help your body in doing this by not adding more strain on it. For example, by diet, exercise, stress release, supplements, visualization, and sheer determination. I saw a healer, a qi gong master, and another naturopathic oncologist. All had very interesting things to say and focus on supporting your body in the healing process. It was a very difficult decision to not do radiation but once I've made the choice, I can't look back. The outcome of my decision is not in my hands anymore and I just have to concentrate on each day at a time.
The naturopath gave some promising method of treating me called hyperthermia which involves heating up certain areas of your body where there is cancer. Cancer cannot live in heat above 42 degrees. Hyperthermia heats the body to 49 degrees and radiation is 90 degrees! This method works best with chemo and raises it's efficacy but he's had a lot of patients in my situation who just did the heating and were successful. A guy from Boston had 20 tumours in his brain and all but one needs to be treated. I have to think about how I want to proceed with this but he is hopeful with the chemo drug that the agency has offered me. I'm just not sure I want to go there. The good thing is, I am seeing a very good chinese herbalist recommended by the qi gong master tomorrow and when I mentioned that to the naturopath, he was very supportive of it. Finally, someone who spoke my language and wasn't afraid of alternatives!
People want to know if I'm going to Florida and I haven't decided that yet either. Right now, my plans are open and I am not committing to anything because there's more research to be done. If I can get the same help here, why bother flying somewhere else for the same thing? I don't want to leave the family if it's not absolutely necessary.
I also want to thank all my friends at Windsor Elementary for my fancy juicer! It has been used several times a day and I could not do without it so thank you for your generosity.
Love, J
Tuesday, October 18, 2011
Wednesday, October 12, 2011
Dazed and Confused
On Friday I saw my oncologist and she didn't say anything I wanted to hear. She didn't seem very knowledgeable on triple negative breast cancer and the outlook was not positive nor the treatment options. I already knew that she wasn't the doctor to see so I let her comments fly over my head and went ahead with a referral to Dr. Gelmon who is the breast cancer specialist and knows all about the state of the art treatment trials. The only thing is, I learned that she is away for two weeks so I won't be able to see her before my radiation.
On Friday I also had a CT and MRI scan to prepare for the radiation. I also had a plastic mask made that shaped my face and is supposed to keep my head in place in order to make the radiation more accurate. My radiation oncologist also came down to tell me in person that there were two more lesions in the scan of the brain which I guess appeared in the two weeks since my stay at the hospital--crazy. So in the radiation, they would be zapping those tumours as well. In the meanwhile, Elt read some stuff on the net about the side effects of radiation like permanent hair loss, loss of short term memory, and depression which really made him concerned for me. So now I am having second thoughts about it.
The other thing I have been very interested in is alternative treatment. There is a place in Florida called the Hippocrates Health Institute where thousands of people have been healed. They immerse you in the raw food diet as well as top notch therapies and counseling to really treat you in a holistic way. All the therapies they do is focused on improving your immune system so that your body can fight disease as it should whereas modern medicine does the exact opposite and suppresses your immune system so cancer can spread or come back. Now if I look at my own case, chemotherapy didn't work for me. I heard that the first 4 treatments I had were so strong that you can only have it administered once in your life. When pharmacists work with those chemo drugs, they have to wear full body protection in case they come in contact with it because it will burn their skin! I mean goggles, hat, boots, gloves, the whole thing. When I switched to the next chemo drug and did 3 treatments of that and it stopped working, I basically did all of it for nothing. Radiation took 5 1/2 weeks but surgery just made my cancer spread. Now 3 months later, I am worse off than before! I was a great patient before, doing exactly what I was told but now I'm not sure I can just accept what the doctors are offering. The problem is that the Hippocrates way and the cancer agency way are complete opposites so it's really hard to do one or the other. I'm going to Hippocrates no matter what for 3 weeks but I just don't know if I will go before/after radiation.
In the meantime, I have spoken to two women who have similar brain mets. One totally put herself in her faith and the tumour disappeared. The other woman is actually a patient of Gelmon and has had many different kinds of treatment. All seemed to be working but the current treatment she is on entails taking 18 pills a day. I have also heard many amazing stories of people healing themselves as well and I want to be one of them too. However, when you have a day like I had yesterday with light headedness, it's discouraging and makes me want to run to radiation. But with the two major surgeries that I've had in the past 3 months, would my body be strong enough to endure it? My radiation oncologist makes it seem so easy and so foolproof but nothing is 100%.
So, now you know why I haven't written in so long. I've been doing tonnes of reading and contemplating my options this past week and I still don't know which way I'm going to go. I did get my radiation postponed til next Wednesday and have told my radiation oncologist about my concerns. On Friday, my oncolgist is going to examine all my specimens in a team setting with a pathologist and they are going to form a treatment plan. I've also made an appointment to see Dr. Parmar on Tuesday at the Integrative Health Centre in Langley. He is a well known naturopathic oncologist and is the only one that works with the cancer doctors at Lions Gate hospital.
So a lot more questions than answers for now but I know that the decision is mine to take and I can't be rushed into it.
Keep up the positive energy! XOXO
J
On Friday I also had a CT and MRI scan to prepare for the radiation. I also had a plastic mask made that shaped my face and is supposed to keep my head in place in order to make the radiation more accurate. My radiation oncologist also came down to tell me in person that there were two more lesions in the scan of the brain which I guess appeared in the two weeks since my stay at the hospital--crazy. So in the radiation, they would be zapping those tumours as well. In the meanwhile, Elt read some stuff on the net about the side effects of radiation like permanent hair loss, loss of short term memory, and depression which really made him concerned for me. So now I am having second thoughts about it.
The other thing I have been very interested in is alternative treatment. There is a place in Florida called the Hippocrates Health Institute where thousands of people have been healed. They immerse you in the raw food diet as well as top notch therapies and counseling to really treat you in a holistic way. All the therapies they do is focused on improving your immune system so that your body can fight disease as it should whereas modern medicine does the exact opposite and suppresses your immune system so cancer can spread or come back. Now if I look at my own case, chemotherapy didn't work for me. I heard that the first 4 treatments I had were so strong that you can only have it administered once in your life. When pharmacists work with those chemo drugs, they have to wear full body protection in case they come in contact with it because it will burn their skin! I mean goggles, hat, boots, gloves, the whole thing. When I switched to the next chemo drug and did 3 treatments of that and it stopped working, I basically did all of it for nothing. Radiation took 5 1/2 weeks but surgery just made my cancer spread. Now 3 months later, I am worse off than before! I was a great patient before, doing exactly what I was told but now I'm not sure I can just accept what the doctors are offering. The problem is that the Hippocrates way and the cancer agency way are complete opposites so it's really hard to do one or the other. I'm going to Hippocrates no matter what for 3 weeks but I just don't know if I will go before/after radiation.
In the meantime, I have spoken to two women who have similar brain mets. One totally put herself in her faith and the tumour disappeared. The other woman is actually a patient of Gelmon and has had many different kinds of treatment. All seemed to be working but the current treatment she is on entails taking 18 pills a day. I have also heard many amazing stories of people healing themselves as well and I want to be one of them too. However, when you have a day like I had yesterday with light headedness, it's discouraging and makes me want to run to radiation. But with the two major surgeries that I've had in the past 3 months, would my body be strong enough to endure it? My radiation oncologist makes it seem so easy and so foolproof but nothing is 100%.
So, now you know why I haven't written in so long. I've been doing tonnes of reading and contemplating my options this past week and I still don't know which way I'm going to go. I did get my radiation postponed til next Wednesday and have told my radiation oncologist about my concerns. On Friday, my oncolgist is going to examine all my specimens in a team setting with a pathologist and they are going to form a treatment plan. I've also made an appointment to see Dr. Parmar on Tuesday at the Integrative Health Centre in Langley. He is a well known naturopathic oncologist and is the only one that works with the cancer doctors at Lions Gate hospital.
So a lot more questions than answers for now but I know that the decision is mine to take and I can't be rushed into it.
Keep up the positive energy! XOXO
J
Wednesday, October 5, 2011
Recovering Well
It has been exactly a week since the brain surgery and I'm finally getting my legs back. My head hurt a bit but surprisingly not too bad. Since I was on veggie juices and salads in the hospital, my body was detoxing as well as getting over the surgery which was hard. So when I came home, I added some soup and buckwheat bread to the diet and it really perked me up. The compression of the surgery also gave me a bit of black left eye but that has cleared up pretty well today. So I've just been laying low and reading a lot about diet and forming a game plan for the months to come.
On Monday, I saw a naturopathic oncologist to get some feedback on my diet and see what information I could get on alternative treatments and supplements. It was an hour long visit and all in all, he told me to keep doing what I'm doing because it's the best thing for me. In his words, "Don't be scared of juicing." I'm not going to go completely raw food and have some cooked food as well but it is important for me to stay alkaline to kill the cancer. Raw vegetables holds the most oxygen and cancer cannot live in that environment. Even though I had already cut a lot of sugars, carbs, and processed foods, it was obviously not enough to keep the cancer away so it's even more important to be as strict as possible with what I eat.
Today I had my stitches removed and also saw my radiation oncologist. I'm eligible to join a study group where I will be monitored more after treatments and will get a MRI every 3 months. The treatment will be the same except the study wants to do the treatments simultaneously. The treatments will be ten whole brain radiation treatments and one stereotactic radiosurgery. They need to radiate the whole brain because there is very likely more cancer cells that are present but cannot be seen on the MRI. Surgery itself makes cancer cells move and most brain mets grow in multiples so there's a high chance of more tumours developing. The stereotactic radiosurgery is a high dose of radiation aimed right at the existing tumour with precision. It's the best way to get rid of the tumour when surgery isn't an option. The doc thinks it's 90% chance it will work. I think it's the recurrence of tumours that's more of a problem to prevent than taking out the ones I have. In any case, this promising news and should not be painful but again in the short term will slightly affect my memory and overall brain function. All the radiation treatments will take only two weeks.
Many people have asked me how come the scan never picked up my mets. My last PET scan was in April which I paid for and that scan doesn't scan the brain. When the radiation and surgery was over, I was scheduled for another CT scan by the agency but I passed on it because I didn't want any more additional radiation since it was only two months later. I probably had these mets right after the reconstructive surgery because like I said, surgery makes cancer move. I don't think anyone could have guessed it would come back so soon so there's no use in looking back. I don't even know my full diagnosis yet because I will see my oncologist on Friday where she can explain it all and tell me about treatment protocols for the rest of my body. Whatever the case is, I'm no longer scared because my will to fight this won't change and I'm determined to give it my all.
Love, J
On Monday, I saw a naturopathic oncologist to get some feedback on my diet and see what information I could get on alternative treatments and supplements. It was an hour long visit and all in all, he told me to keep doing what I'm doing because it's the best thing for me. In his words, "Don't be scared of juicing." I'm not going to go completely raw food and have some cooked food as well but it is important for me to stay alkaline to kill the cancer. Raw vegetables holds the most oxygen and cancer cannot live in that environment. Even though I had already cut a lot of sugars, carbs, and processed foods, it was obviously not enough to keep the cancer away so it's even more important to be as strict as possible with what I eat.
Today I had my stitches removed and also saw my radiation oncologist. I'm eligible to join a study group where I will be monitored more after treatments and will get a MRI every 3 months. The treatment will be the same except the study wants to do the treatments simultaneously. The treatments will be ten whole brain radiation treatments and one stereotactic radiosurgery. They need to radiate the whole brain because there is very likely more cancer cells that are present but cannot be seen on the MRI. Surgery itself makes cancer cells move and most brain mets grow in multiples so there's a high chance of more tumours developing. The stereotactic radiosurgery is a high dose of radiation aimed right at the existing tumour with precision. It's the best way to get rid of the tumour when surgery isn't an option. The doc thinks it's 90% chance it will work. I think it's the recurrence of tumours that's more of a problem to prevent than taking out the ones I have. In any case, this promising news and should not be painful but again in the short term will slightly affect my memory and overall brain function. All the radiation treatments will take only two weeks.
Many people have asked me how come the scan never picked up my mets. My last PET scan was in April which I paid for and that scan doesn't scan the brain. When the radiation and surgery was over, I was scheduled for another CT scan by the agency but I passed on it because I didn't want any more additional radiation since it was only two months later. I probably had these mets right after the reconstructive surgery because like I said, surgery makes cancer move. I don't think anyone could have guessed it would come back so soon so there's no use in looking back. I don't even know my full diagnosis yet because I will see my oncologist on Friday where she can explain it all and tell me about treatment protocols for the rest of my body. Whatever the case is, I'm no longer scared because my will to fight this won't change and I'm determined to give it my all.
Love, J
Saturday, October 1, 2011
Home Sweet Home! Posted by Elton
Yesterday afternoon, Jess made a lot of progress in her recovery at the hospital. She was able to get up off the bed and walk on her own...yup, you read that correctly...a day after surgery, she was able to get up and walk to the bathroom on her own! Her surgeon came by and said that she had a choice of being discharged or she could stay another night. After much thought, Jess chose to return to the comfort of her own home and rest.
In the evening, she was experiencing some nausea and light headache which carried over to this morning and early afternoon. This affected her appetite a lot but by this evening, we have finally gained control of her symptoms with some medication and she's feeling a lot better as I'm typing this blog. I'm going to try and get her to relax now by watching some TV, get some healthy vital nutrients in her, do some meditation, and have a good nights rest.
In the evening, she was experiencing some nausea and light headache which carried over to this morning and early afternoon. This affected her appetite a lot but by this evening, we have finally gained control of her symptoms with some medication and she's feeling a lot better as I'm typing this blog. I'm going to try and get her to relax now by watching some TV, get some healthy vital nutrients in her, do some meditation, and have a good nights rest.
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