It's only been a couple of weeks since I've written but it seems like a month. I've forgotten that I haven't even explained the treatments I am doing. We have been so busy with appointments that time really flies. Since my last post, I have been seeing the herbalist/acupuncturist (Dr. Wong) and the qi gong master (I'll rename "Obi Wan" as a sign of respect because he seriously does have the force within!) Each expert is a serious healer in their own right, have degrees in both western and eastern medicine, and have a very zen-like qualities.
Dr. Wong's main talent is his ability to prescribe chinese herbs and acupuncture. He tailors the prescription for 6-8 days at a time. He operates out of his enormous pink house on the west side, straight out of the 90's (brass accents, glass, and fake floral arrangements--I thought I stepped into the Phillips house!). You go around the back and down the stairs where he has a sliding door and a sitting area. You may see 2 people waiting or 10. Whatever the case is, people are always streaming out of each of the rooms and it's hard to keep track. He wears a lab coat and is over 70 years old but looks like he's 50. He has a heavy mandarin accent when he speaks english and always jokes about how he can't retire even though he doesn't need the money because his patients won't let him (I'm like, "Stop charging me then!") He is a bit of a celebrity in China and is well known in what he does which is why he wanted to get away from it all and come to Vancouver. All the other patients and even the people at the herbal store, have numerous healing stories of Dr. Wong to tell--from m.s., advanced lung cancer with a respirator, to someone who couldn't walk. He himself is not shy about sharing his own stories and says to me once, "I saved that guy's life 2 times. Her 1 time." Even Elt is seeing him to see if he can straighten out his eye which stung him pretty bad that first time in which Dr. Wong responded, "The acupuncture you had before was needles to skin. This is acupuncture (chuckle, chuckle)." He has a lot of breast cancer patients and half of his patients are caucasian. Lots of people we spoke to have seen him for over 20 years. All he does is check my pulse, look at my tongue, and pokes about 8 needles in me. Sometimes it stings a bit but in the half hour or so that I lie there, my body gets really cold and then really warm. When I'm warmed up, I know it's time to go. I go there 3 times a week. He makes a lot of cash business and I laugh because he keeps it all in a desk drawer which I'm sure you know bugs the heck out of me.
Obi's personality is totally opposite of Dr. Wong (no beauty products here!). When I think of him, I think of the word "organic". He has a lot of grey hair and his beard is long and contains a lot of wisdom. He is humble, direct, serious, and natural. He lives a simple life and does not believe in materialism. I go to his house where I hung out so many times as a teenager, and there's usually no one else there. He is very against over charging patients and even has a kale garden for me to access so how could he do wrong? Obi has a warm persona and over the last two weeks, I really feel like he's really watching my progress closely and tries to steer me in the right direction of healing since he has helped so many people before. He told me the patient he sees every night was someone who was told they were going to die 4 months ago. His advice has always stuck to me from the first time we met: 1) determination, 2) patience, 3) hard work. Qi Gong is the art of breathing, transferring energy called "heating", and meditation. Obi has taught me a series of 6 exercises to do once a day and takes almost an hour. When I see him, he places his hands on different parts of my head, shoulders, back, and stomach and transfers energy into those areas. Sometimes I feel the warmth of his hands or a gentle pull in my core in a certain direction. I did make what Obi said was great progress on our 3rd session and was very happy he was able to penetrate his energy in the side of my head where I had my surgery. He told me yesterday, "I didn't want to tell you before but your head was like a brick! Very hard...I was very worried. But now, it will be okay." Before that my pulse was so low that we could never find it! However, after that session, we could feel my pulse ever since.
The amazing thing is that Obi can treat me even when we're not in the same room! We did 2 sessions while he was in Edmonton and 2 sessions when I felt sick over the weekend. I just call him up, hang up, sit relaxed and focused, and he'll apply the heating. I think I can feel it stronger when he does it remotely like that so it's pretty amazing! As of last night he went away to China and Taiwan for 3-4 months so we'll be corresponding by phone. Of course, he doesn't usually get a cell phone but like I say, he really wants to see me through this so he has gotten a phone so I can contact him. I will be continuing qi gong treatments 3 times a week for a couple of weeks just to get back on my feet. Thank you H.S. so much for telling me to calling him initially. The experience has been invaluable and I'm just glad to have someone like that in my life. He even gave me a hug yesterday when we parted. :)
Since we have starting treatment, I am feeling confident that I have made the right choice. There are no certainties in life and when it comes down to it, it's up to me to do the work. So what is the work? Daily: 45 minute walk, chinese herbal medicine that takes 1 1/2 hours to boil and then split into 3 portions, 2 green veggie juices, mushroom herbal medicine that boils for 1 1/2 hours and drunk twice a day (every other day), and an hour of meditation exercises a night. Under the advice of all experts, I am trying to really wind down by 9 when the kids go to sleep because as of now, I barely have time to do the exercises which should be a priority. So if I don't answer calls or emails, you know what I'll be doing--not watching t.v.! I am still thinking of the naturopathic oncologist but honestly, I just don't have the time right now to see him. I almost feel like there's too many cooks in the kitchen and I need to just get used to this grind first before I can take on more advice.
The raw food is totally sliding away because the weather change has not helped. I feel like I still need to keep a lot of restrictions on my diet but cooked food has to be half or more of my day. Dr. Wong said I could have some congee so I jumped on that! I think food will always be a hot topic and every expert has their own opinions but I just try to take from the majority. However, if I don't allow some flexibility after such a long cleanse, I am seriously going to hate food and that's not something that will be helpful to healing. So we'll continue plugging away and see where this path takes me...
A few honorable mentions: Elt because he has been superdad in the mornings. He lets me sleep in and the meantime, has to dress the kids, feed them, pack Aidan's lunch, start my herbs, make our green juice (20 min.) and get Aidan to school. All usually within the hour which we were barely doing as a couple; Elt's mom who has been filling in for my mom and has been over everyday to just do dishes and garbage; and Nancy and Lucia because they have been surrogate parents to Aidan who never knows who's picking him up after school but is always glad it's one of them! Thank you all!
Love, J
Tuesday, November 1, 2011
Tuesday, October 18, 2011
Pass on Radiation
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
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
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.
Thursday, September 29, 2011
Surgery Success! Posted by Elton
Jessica's surgery landed on Wed, September 28th and I couldn't have asked for a better birthday present. She went into the OR at noon and at 2:45pm, I received a call from our surgeon (I say "our" because I had him perform on me once before) to tell me that the surgery went well without any complications. The larger of the tumor was near a blood vessel that is very complicated and risky to remove but he managed to get it all out. The second one was a little difficult for him to identify with the naked eye which tissue was malignant but he told me they use some kind of computer imaging during the procedure and was confident that he got it out too (which was confirmed by a CT scan this morning). Jess remained in a standard holding recovery area for about 6 hours post surgery and is closed to people who are not patients and doctors. Luckily our wonderful family doctor, Dr. Hutchinson got to see her and texted me the news that we were all concerned about - "saw her and able to talk well". Knowing that the tumors were removed successfully without impairing her speech was a sigh of relief. Seeing her at 8pm couldn't come soon enough. I was expecting to see part of her head shaved and bandages wrapped around her head with blood on it and to my amazement, there was none. She was very tired and drugged up by pain killers so I couldn't speak to her. And with painkillers comes the side effects of nausea which is always the BIG problem for her - even with her last surgery. She toughed it out as she normally does and by tonight, she was acting more or less like her old self. Words can't express how grateful and thankful I am of her recovery in less than 24 hours! Thank you Dr. Heran!
Having said that, there isn't much time to celebrate. We need to get Jess at full strength again and get her on to the next treatment for her third brain tumor and the others in her body. Thank you for all the supportive prayers, thoughts, e-mails and texts we have received in the last 3 days! It's been a roller coaster of emotions with having the surgery postponed but at the end, it was all worth it!
Monday, September 26, 2011
Surgery Postponed for Wednesday
After being back at the hospital for 12 hours, we found out that the surgery will be postponed. They were trying to fit me to the schedule which is based on the number of traumas that come in. So I am back at home tonight in time to tuck the kids in bed and we'll try again tomorrow. No idea what time will be set or anything. Maybe this is a bit easier for me now since the time has gotten me to collect myself and regroup.
Gonna catch some shows on the tube now!
J
Gonna catch some shows on the tube now!
J
Sunday, September 25, 2011
Starting Over Again
How things can totally change around in a few days? Wednesday night while Elt was prepping dinner, I literally lost my ability to speak. I wanted to ask Elt where the salmon was but all I could do was stare at him blankly. He didn't understand why I wasn't responding. I couldn't even move my lips. Finally I uttered the words, "Where's the pajamas?" I was confused and I went over to wetch some t.v. Half an hour later, Elt was calling us for dinner and I stood over Aidan to tell him to go to the table. Again, I couldn't say a thing. I was thinking, "Is this really happening? Why can't I can't open my mouth?" Getting more and more concerned, Elt moved me over the couch and that's when I had a seizure in my face. We called the ambulance and I was admitted into RCH.
At the hospital, I was put in a CT scan of my head and was told that I had 3 brain tumours. 2 were operatible and the other was too dangerous. The next day, after a full body CT and a MRI of my head, they told me I had cancer in my lungs as well. The only good news is that my bone scan came back clear. Fast forward to today, I was given a weekend pass to come home so I can rest and my bed could be saved until I go back in tonight to prep for surgery Monday.
On top of all the drama, the night we came home, Liam was to RCH to do tests on his breathing. He's had similar problems before but really couldn't have happened at a worse time. He is doing much better now.
The surgery will be 2 hours long and apparently, not too painful compared to my reconstruction. I will be in recovery for 6 hours afterwards. I prefer to not have visitors for the first two days and even then, except family. I will be expected to stay the hospital 3-5 days depending on how I do.
Please refer to the blog for more information as the constant bombardment of questions is exhausting to Elt. We really just need to focus on moment-by-moment decisions. Currently Elt and I am on a raw veggie diet so there's no need for food. It's just a another form of combat on my side and has proven time and time and again that diet can make a big difference. I am also looking into some alternative ways to use the effectively of the chemo which works in conjunction with BCCA.
There are no words to explain how I feel but I'm trying my best. It comes in waves. I don't know what treatment protocols are ahead but I'm just going to focus on the surgery. Thank you for all your continual support, prayers, and positive energy. This will be the long haul and we're going to need all the strength we can to get through this.
Love, J
At the hospital, I was put in a CT scan of my head and was told that I had 3 brain tumours. 2 were operatible and the other was too dangerous. The next day, after a full body CT and a MRI of my head, they told me I had cancer in my lungs as well. The only good news is that my bone scan came back clear. Fast forward to today, I was given a weekend pass to come home so I can rest and my bed could be saved until I go back in tonight to prep for surgery Monday.
On top of all the drama, the night we came home, Liam was to RCH to do tests on his breathing. He's had similar problems before but really couldn't have happened at a worse time. He is doing much better now.
The surgery will be 2 hours long and apparently, not too painful compared to my reconstruction. I will be in recovery for 6 hours afterwards. I prefer to not have visitors for the first two days and even then, except family. I will be expected to stay the hospital 3-5 days depending on how I do.
Please refer to the blog for more information as the constant bombardment of questions is exhausting to Elt. We really just need to focus on moment-by-moment decisions. Currently Elt and I am on a raw veggie diet so there's no need for food. It's just a another form of combat on my side and has proven time and time and again that diet can make a big difference. I am also looking into some alternative ways to use the effectively of the chemo which works in conjunction with BCCA.
There are no words to explain how I feel but I'm trying my best. It comes in waves. I don't know what treatment protocols are ahead but I'm just going to focus on the surgery. Thank you for all your continual support, prayers, and positive energy. This will be the long haul and we're going to need all the strength we can to get through this.
Love, J
Thursday, August 4, 2011
All Clear!
Recovery has been slow and it has been hard to just sit on butt while everyone else whizzes around me. I don't really feel any pain except in my right arm which has limited movement but my entire abdomen is still very tight and uncomfortable. Only just this past week I have been getting back to doing some light housework and driving (although not lifting yet). I also started physiotherapy this week to work on my arm which I am excited about because I feel physically ready to push myself whereas before I was nursing all my injuries. Right now my arm only has half the flexibility it used to so I am eager get it all back soon. I have seen all my doctors for followups and they have been impressed with how the scars have healed. After a closer look, I actually only have one lower stomach scar as my surgeon was able to go over the old c-section scar. Most remarkable is the fact that there are no visible stitches since all of the stitches are underneath the skin and will dissolve over time. Besides a low fever I had one night due to a bug I caught rather than an infection, everything has been going as expected.
Last week, I received my pathology report from the surgery which include details on all the tests they conducted on what was taken out. Although the tumour was still 8cm in diameter, only 2cm of it had cancer because most of it was scar tissue and fibrosis that was a result of all the treatment I had. The surgeon took out a margin of tissue around the tumour which also tested negative for cancer. I had 19 lymph nodes removed and 5 of them were positive. So all in all, I am CANCER FREE and just have to focus on recovering.
So you may be wondering why it took me so long to tell everyone this great news which I should be shouting from the rooftops? Well, it's hard to explain but I had to process what that really meant for us. In the report, I also found out that the cancer tested differently. I originally was estrogen positive (which can be treated with hormones for 5 years and lowers recurrence rates) but when it tested this time, it was negative. This puts me in the category of having what is termed "triple negative" which is more aggressive type of breast cancer and therefore does not end the fight for me. My doctor still wants me to take the hormone as a precaution since the type of cancer I have sometimes tests positive for estrogen. In the end, I was fortunate to have the cancer contained and therefore taken out.
So the next step...as the doctor said, "Find your new normal." Just getting back into the swing of things and taking it one step at a time. This is the toughest phase of all survivors because you actually have the time to reflect on what has actually happened whereas during treatment, you just focus on the task at hand. The threat of a recurrence will always be present but I have started making lifestyle changes to my diet and will continue to stay positive. Elt has worked the hardest out of anybody in this journey and the best thing about everything coming to an end is to just give him a break and to give him time to refocus his energies on himself. He left his job to explore a new career and instead spent the year taking care of his family. I absolutely could not have done this without him being there every step of the way (literally not missed an appointment) so I thank him from the bottom of my heart. For the rest of my friends and family, my gratitude for all your support and love cannot be expressed. I am overwhelmed to think about it and it has taught me to live a life without bitterness or regret and I am thankful for this experience.
In 8 months...30+ Doctor appointments, 35 Treatments, and 65 needles.
Yes, we did f#%k cancer!
Lots of love, J
Last week, I received my pathology report from the surgery which include details on all the tests they conducted on what was taken out. Although the tumour was still 8cm in diameter, only 2cm of it had cancer because most of it was scar tissue and fibrosis that was a result of all the treatment I had. The surgeon took out a margin of tissue around the tumour which also tested negative for cancer. I had 19 lymph nodes removed and 5 of them were positive. So all in all, I am CANCER FREE and just have to focus on recovering.
So you may be wondering why it took me so long to tell everyone this great news which I should be shouting from the rooftops? Well, it's hard to explain but I had to process what that really meant for us. In the report, I also found out that the cancer tested differently. I originally was estrogen positive (which can be treated with hormones for 5 years and lowers recurrence rates) but when it tested this time, it was negative. This puts me in the category of having what is termed "triple negative" which is more aggressive type of breast cancer and therefore does not end the fight for me. My doctor still wants me to take the hormone as a precaution since the type of cancer I have sometimes tests positive for estrogen. In the end, I was fortunate to have the cancer contained and therefore taken out.
So the next step...as the doctor said, "Find your new normal." Just getting back into the swing of things and taking it one step at a time. This is the toughest phase of all survivors because you actually have the time to reflect on what has actually happened whereas during treatment, you just focus on the task at hand. The threat of a recurrence will always be present but I have started making lifestyle changes to my diet and will continue to stay positive. Elt has worked the hardest out of anybody in this journey and the best thing about everything coming to an end is to just give him a break and to give him time to refocus his energies on himself. He left his job to explore a new career and instead spent the year taking care of his family. I absolutely could not have done this without him being there every step of the way (literally not missed an appointment) so I thank him from the bottom of my heart. For the rest of my friends and family, my gratitude for all your support and love cannot be expressed. I am overwhelmed to think about it and it has taught me to live a life without bitterness or regret and I am thankful for this experience.
In 8 months...30+ Doctor appointments, 35 Treatments, and 65 needles.
Yes, we did f#%k cancer!
Lots of love, J
Monday, July 4, 2011
Home Sweet Home
After staying at the hospital for three nights, I was ready to come home as planned. The task seemed a bit daunting after the first two nights but it's amazing how much I have improved each day and I'm glad to be home.
Overall, the surgery went well. I was told they couldn't close where my c-section scar was so I will have two scars in my lower abdomen but it will still be covered by a bathing suit. After such extensive surgery, you would assume I would be wrapped up like a mummy but it's actually quite the opposite. The surgical sites are just covered by sticky tape over the stitches and a bit of gauze to protect it from my clothes. The breast only has a few lines on it and looks really impressive. I have to admit I haven't even taken a good look in the mirror yet but from what I've been told, it could not have gone better. The most icky thing about the surgery is that I have three drains coming out of my body for a week. There are tubes coming out of my body that collect fluid into these grenade-looking rubber containers that have to be emptied a few times a day. Over time when the fluid gets less, I can have the drains pulled out since the body will then be able to naturally absorb that amount of liquid. TMI? Sorry, haha but it's not all glamorous!
My stint at the hospital consisted mostly of fogginess, gaping gowns, asking for meds, worrying about my next bathroom trip, and sleeping. By the second day I stopped taking narcotics because they only caused me nausea and fatigue. This was a long learning curve of trying different things but in the end, Tylenol on a regular schedule seemed to do the trick. I'm not in any pain when I am just lying in bed and when I get help out of bed, it does hurt--not going to lie. However, my flexibility improves by the day and hurts a little less everyday. It's only when I'm behind on my pills when I will get chills and shakes from the pain and then I know I need to take something quick. The downside of not being heavily medicated is that it makes it harder to sleep since I'm pretty uncomfortable stuck on my back no matter what i do. Other than that, on my last day at the hospital, I was eating a good amount of food and sleeping a lot less so I figured it was time to leave.
Our major concern with leaving the hospital was Liam who could jump on me if he saw me so when I arrived at the house, my aunts took him into the backyard to play. He actually didn't know I was home until this morning when I couldn't stand not seeing him anymore. I put Elmo on as a distraction (as most mornings), put a pillow on my side, and we were able to hang out as if no time had passed. Being at home with the kids is great but it also means that Elt becomes the head nurse. I had the poor guy running about getting sheets, pillows, drinks, etc. all night. Add on the title of custodian since my gimped right arm knocked over a full glass of apple juice as I was reaching for the phone this morning. Aidan has become the nurse's assistant and set up my toothbrush station, as well as fetched me stools, blankets, and food. At least he never tires so I don't feel bad, haha. I have a walker from Elt's grandma and it's great because now I can hobble like a granny to use the washroom all by myself!! Okay, I still need help up if I'm not sitting but this has been a huge accomplishment today. Just being able to sit in the living room brings back some normalcy so I'm doing well so far.
Thanks for the visits, gifts, and positive energy. Enjoy the sunshine!
Love, J
Overall, the surgery went well. I was told they couldn't close where my c-section scar was so I will have two scars in my lower abdomen but it will still be covered by a bathing suit. After such extensive surgery, you would assume I would be wrapped up like a mummy but it's actually quite the opposite. The surgical sites are just covered by sticky tape over the stitches and a bit of gauze to protect it from my clothes. The breast only has a few lines on it and looks really impressive. I have to admit I haven't even taken a good look in the mirror yet but from what I've been told, it could not have gone better. The most icky thing about the surgery is that I have three drains coming out of my body for a week. There are tubes coming out of my body that collect fluid into these grenade-looking rubber containers that have to be emptied a few times a day. Over time when the fluid gets less, I can have the drains pulled out since the body will then be able to naturally absorb that amount of liquid. TMI? Sorry, haha but it's not all glamorous!
My stint at the hospital consisted mostly of fogginess, gaping gowns, asking for meds, worrying about my next bathroom trip, and sleeping. By the second day I stopped taking narcotics because they only caused me nausea and fatigue. This was a long learning curve of trying different things but in the end, Tylenol on a regular schedule seemed to do the trick. I'm not in any pain when I am just lying in bed and when I get help out of bed, it does hurt--not going to lie. However, my flexibility improves by the day and hurts a little less everyday. It's only when I'm behind on my pills when I will get chills and shakes from the pain and then I know I need to take something quick. The downside of not being heavily medicated is that it makes it harder to sleep since I'm pretty uncomfortable stuck on my back no matter what i do. Other than that, on my last day at the hospital, I was eating a good amount of food and sleeping a lot less so I figured it was time to leave.
Our major concern with leaving the hospital was Liam who could jump on me if he saw me so when I arrived at the house, my aunts took him into the backyard to play. He actually didn't know I was home until this morning when I couldn't stand not seeing him anymore. I put Elmo on as a distraction (as most mornings), put a pillow on my side, and we were able to hang out as if no time had passed. Being at home with the kids is great but it also means that Elt becomes the head nurse. I had the poor guy running about getting sheets, pillows, drinks, etc. all night. Add on the title of custodian since my gimped right arm knocked over a full glass of apple juice as I was reaching for the phone this morning. Aidan has become the nurse's assistant and set up my toothbrush station, as well as fetched me stools, blankets, and food. At least he never tires so I don't feel bad, haha. I have a walker from Elt's grandma and it's great because now I can hobble like a granny to use the washroom all by myself!! Okay, I still need help up if I'm not sitting but this has been a huge accomplishment today. Just being able to sit in the living room brings back some normalcy so I'm doing well so far.
Thanks for the visits, gifts, and positive energy. Enjoy the sunshine!
Love, J
Wednesday, June 29, 2011
Big Day Tomorrow
So the day has finally arrived and I'm going in tomorrow to VGH at 6am. The surgery itself is scheduled for 8am and will take 4 hours. I should be done around noon and then I'll have a couple of hours in recovery. I will be staying for 3 nights and will probably be discharged on Sunday. The kids will be well taken care of by ALL my family because everyone is pitching in. I welcome visitors but please do not rush to see me this weekend. I know it's long weekend with busy plans and it'll pass by very quickly. I'll be home before you know it and can make time to catch up later. Also, I am limited to liquid food during recovery so there's no need to bring me treats. :)
I am not yet feeling anxious or nervous about the surgery but reality is about to hit tonight. It'll be hard to not see the kids but they will be kept busy. Aidan knows that I am going to have surgery since I have been talking about it for the past couple of weeks. When he asked if surgery was today and I replied no, it was met with a big, "Ahhhhh!! Why NOT?!" This is because he knows that his fave cousin, Charlotte, will be staying overnight with him. So in his little head, he's only concerned with when the fun starts which is why the distractions are in place! Then there's Liam which I'm sure will give up asking for me after being prodded with a rice cracker a few times so there's not much worry on that end. It'll just be a struggle not letting Liam attach himself on me like he usually does when he hasn't seen me in a while since I'm not supposed to lift anything for 2 months. Well, one day at a time and I'll worry about that later. Right now, just focused on having dinner tonight...
Thank you all for your positive words of encouragement and support. I am too lucky to have you all in my life and would not have gone this far without all of you.
Lots of love, J
P.S. Do not hesitate to call or text Elt in the next few days. He is going to try to blog at some point.
I am not yet feeling anxious or nervous about the surgery but reality is about to hit tonight. It'll be hard to not see the kids but they will be kept busy. Aidan knows that I am going to have surgery since I have been talking about it for the past couple of weeks. When he asked if surgery was today and I replied no, it was met with a big, "Ahhhhh!! Why NOT?!" This is because he knows that his fave cousin, Charlotte, will be staying overnight with him. So in his little head, he's only concerned with when the fun starts which is why the distractions are in place! Then there's Liam which I'm sure will give up asking for me after being prodded with a rice cracker a few times so there's not much worry on that end. It'll just be a struggle not letting Liam attach himself on me like he usually does when he hasn't seen me in a while since I'm not supposed to lift anything for 2 months. Well, one day at a time and I'll worry about that later. Right now, just focused on having dinner tonight...
Thank you all for your positive words of encouragement and support. I am too lucky to have you all in my life and would not have gone this far without all of you.
Lots of love, J
P.S. Do not hesitate to call or text Elt in the next few days. He is going to try to blog at some point.
Monday, June 13, 2011
Off to Relaxation
Last week I received a call from my oncologist, Dr. S in response to an email I sent her regarding her thoughts on the surgical options. She made a call to the surgeon and discussed in more detail about her reservations for the longer surgery. In the end, my oncologist agrees with the surgeon that I should go for the shorter surgery (pedicled tram) in hopes of having less complications. I am happy with her feedback and look forward to the operation on the 30th. I just felt that the surgeon and plastic surgeon had such differing opinions that I needed to know what my oncologist thought since she knows me best. One of the things I've learned through this process is to seek that second opinion on big decisions because all doctors have reasons for what they suggest, and those reasons are not always obvious. Either the doctor doesn't communicate it in those precious 10 minutes they have with you or you didn't happen to ask the right question. At least nowadays, I'm able to write a quick email to them to get an answer that doesn't involve waiting rooms or appointments.
It only took a week and a half for my skin to heal and as of now, looks pretty normal. The darkened skin from radiation has rubbed off and has uncovered new healthy skin. I'm always baffled at how the body can heal itself so quickly. I will still be careful to stay out of the sun until the surgery but at least I can go swimming. I also have more energy than during radiation and can definitely feel the difference.
At this time, I am not nervous about the surgery at all and am just enjoying the time off from treatment. We have been catching up with friends, going to summer events, and even attended Game 1 which was the highlight of this month (maybe the highlight of Elt's life). Tomorrow we are heading off to Kelowna with my sis and her family for 5 days. We're looking forward to doing nothing and letting the kids run around on the beach. When I come back, I'll be rushing around to have as much fun as possible before the end of the month. :)
I will send details of the surgery as soon as I know.
J
It only took a week and a half for my skin to heal and as of now, looks pretty normal. The darkened skin from radiation has rubbed off and has uncovered new healthy skin. I'm always baffled at how the body can heal itself so quickly. I will still be careful to stay out of the sun until the surgery but at least I can go swimming. I also have more energy than during radiation and can definitely feel the difference.
At this time, I am not nervous about the surgery at all and am just enjoying the time off from treatment. We have been catching up with friends, going to summer events, and even attended Game 1 which was the highlight of this month (maybe the highlight of Elt's life). Tomorrow we are heading off to Kelowna with my sis and her family for 5 days. We're looking forward to doing nothing and letting the kids run around on the beach. When I come back, I'll be rushing around to have as much fun as possible before the end of the month. :)
I will send details of the surgery as soon as I know.
J
Saturday, May 28, 2011
Light at the End of the Tunnel
Yes, I am finally seeing the light! Only ONE more radiation to go on Monday and I am done. Crazy to think it's over already but it has been a very busy month and a half for us. When the appointment times change daily, it can really disrupt your day. One day after complaining about having to wait 3 hours in between an appointment and radiation, I was told, "Oh, you should have come in. We would have just fit you in--we do it all the time!" Since then, I haven't really been following my scheduled times, haha. It makes life a lot easier though so I can still drop off and pick up Aidan from school, save on parking, and most importantly, save on TIME. I've gotten to know the radiation therapists well and it was easy to see them everyday because they kept things light and cheerful. Aidan often came with me on non-school days and he was allowed to help push buttons on the radiation table and even speak to me through the mic. My skin is just starting to peel a little this week like a bad sunburn but all in all, I am considered lucky. I hardly took naps during the day and was able to power through the day as usual so there's not much to complain about.
This week I had 3 doctor's appointments! The first person I saw was my surgeon, Dr. D. Interesting points from that meeting: 1) She was pleased with the results of radiation and noticed considerable shrinkage of tumor and nodes, 2) She wanted to make sure the surgery was going to take place promptly, 3) She wanted me to have a less complicated reconstructive surgery option (4 hours vs. 8 hours). I told her I was more concerned about having a successful surgery than the reconstruction and that I would forgo the reconstruction if necessary. However, since most of the breast skin would have to be removed along with the tumor, reconstruction of some sort would have to take place because there wouldn't be enough skin left to close the wound. She strongly recommended that I get a different kind of reconstructive surgery that had less chance for complications due to my compromised immune system and past lengthy treatments. She said she would speak to the plastic surgeon to discuss the change in plans and schedule a date.
On Thursday, I saw my oncologist, Dr. S. She was also pleased with the outcome of the radiation. To let you know the kind of care I am getting, she asked me, "So, do you need anything from me now? Is there anything i need to advocate for you for surgery?" Amazing! She explained I would get another injection of hormones instead of starting on tamoxifen (the drug I would be on for 5 years after surgery) because there was a slight risk of the drug causing complications during surgery. The injected drug and the tamoxifen (which is a pill) does the same thing--shut of the production of estrogen, so it doesn't really matter what I use as long as I am getting something.
On Friday, I got a surprise call from my plastic surgeon, Dr. M who wanted to see me in the afternoon. She had spoken to Dr. D and wanted to go over other options with me. Luckily, one very yucky surgery that involves taking a flap of skin from my back was ruled out! Not enough back fat, thank goodness! So, we are going for the "pedicled tram flap" rather than the "diep flap". The main difference is 4 hours less surgery time and the removal of some muscle from the tummy which could hurt a bit more afterwards. The longer surgery has a better recovery but requires more skill which Dr. M definitely has. I think I will get a second opinion from my oncologist before a final decision is made. Either way, the date is set for June 30 at VGH. Another perk is on that day, Dr. M performs surgery with her colleague who is one of the best plastic surgeons in the lower mainland so I will have 3 awesome surgeons in the room. Strangely enough, he will be the first male doc on my team! I am in good hands and am not worried. If you dare to read more information on the surgery, this was a pretty good link I found: http://www.breastreconstruction.org/TypesOfReconstruction/diep_flap.html
We are still hoping to do a short getaway before surgery so if anyone has any ideas for a relaxing place that is nearby, let me know. We were actually trying to book a vacation to Cabo during the week of the surgery but it will have to wait until the fall now. It will be a better time anyway since I will be completely recovered and can actually sit in the sun.
Here's to more sun and less rain in June!
J
This week I had 3 doctor's appointments! The first person I saw was my surgeon, Dr. D. Interesting points from that meeting: 1) She was pleased with the results of radiation and noticed considerable shrinkage of tumor and nodes, 2) She wanted to make sure the surgery was going to take place promptly, 3) She wanted me to have a less complicated reconstructive surgery option (4 hours vs. 8 hours). I told her I was more concerned about having a successful surgery than the reconstruction and that I would forgo the reconstruction if necessary. However, since most of the breast skin would have to be removed along with the tumor, reconstruction of some sort would have to take place because there wouldn't be enough skin left to close the wound. She strongly recommended that I get a different kind of reconstructive surgery that had less chance for complications due to my compromised immune system and past lengthy treatments. She said she would speak to the plastic surgeon to discuss the change in plans and schedule a date.
On Thursday, I saw my oncologist, Dr. S. She was also pleased with the outcome of the radiation. To let you know the kind of care I am getting, she asked me, "So, do you need anything from me now? Is there anything i need to advocate for you for surgery?" Amazing! She explained I would get another injection of hormones instead of starting on tamoxifen (the drug I would be on for 5 years after surgery) because there was a slight risk of the drug causing complications during surgery. The injected drug and the tamoxifen (which is a pill) does the same thing--shut of the production of estrogen, so it doesn't really matter what I use as long as I am getting something.
On Friday, I got a surprise call from my plastic surgeon, Dr. M who wanted to see me in the afternoon. She had spoken to Dr. D and wanted to go over other options with me. Luckily, one very yucky surgery that involves taking a flap of skin from my back was ruled out! Not enough back fat, thank goodness! So, we are going for the "pedicled tram flap" rather than the "diep flap". The main difference is 4 hours less surgery time and the removal of some muscle from the tummy which could hurt a bit more afterwards. The longer surgery has a better recovery but requires more skill which Dr. M definitely has. I think I will get a second opinion from my oncologist before a final decision is made. Either way, the date is set for June 30 at VGH. Another perk is on that day, Dr. M performs surgery with her colleague who is one of the best plastic surgeons in the lower mainland so I will have 3 awesome surgeons in the room. Strangely enough, he will be the first male doc on my team! I am in good hands and am not worried. If you dare to read more information on the surgery, this was a pretty good link I found: http://www.breastreconstruction.org/TypesOfReconstruction/diep_flap.html
We are still hoping to do a short getaway before surgery so if anyone has any ideas for a relaxing place that is nearby, let me know. We were actually trying to book a vacation to Cabo during the week of the surgery but it will have to wait until the fall now. It will be a better time anyway since I will be completely recovered and can actually sit in the sun.
Here's to more sun and less rain in June!
J
Thursday, May 5, 2011
Speed Bumps
The last week of April was a bit grueling. While I was waiting for my PET scan, I was experiencing all these symptoms that made me start to doubt myself. Every time I lay in bed to watch tv, my legs would get numb and tired and wouldn't really go away if I tried to stretch them out. The bone in the middle of my chest was aching and made me think something was wrong with my lungs, and then my breast was swollen. I held it together over the long weekend but when I showed up at the PET scan office on Wednesday morning and they said, "Sorry, we can't do it today," I almost lost it on the girl. They had a problem with the machine and needed to reset it which takes 2 hours, blah blah, I couldn't even remember what she said. All I knew was that I had to wait another 2-4 days. I went home defeated and waited for the call from the manager and they ended up scheduling me in for Friday with a $350 discount.
In the meantime, I finally got to see my radiation oncologist. This was the appointment I had been waiting for since I had not seen a doctor in 3 weeks, the last time in which I was told by my regular oncologist that I was switching to radiation. Many questions still loomed over my mind--why couldn't I have continued with a different kind of chemo? Why are we doing radiation before surgery again? Why isn't it a good idea to take this mother-of-a-thing out of my breast already? And most importantly, are we sure that we are doing the RIGHT thing?! And that's exactly how my appointment started. I said, "I need you to tell me that we are doing the right thing." My doctor put her hands on my shoulders, looked me in the eye, and told me what I needed to hear. She told me that when chemo is not working, then we need to do something completely different. Some people react to radiation and not chemo, and vice versa. The important thing was to remember that I was getting treatment right now. The order of radiation and surgery doesn't matter because I need both in the end. However, to do radiation first will give me a better surgical outcome because if the tumour shrinks away from the skin more, then they won't have to graft skin from elsewhere. Also, radiation treats the lymph nodes in the neck whereas those nodes will not be removed in surgery (only the ones under the arm will be removed). She also told me the pain the in chest was due to the radiation, as well as the swelling of the breast. So I walked away from the appointment with a sigh of relief and calmed my fears.
As for the numbness in my legs, I forgot to mention earlier that I had a hormone injected in me before radiation started. The purpose is to shut off the estrogen in my body and put me in a premenopausal state. Anyways, later that night, I remembered a 10 minute lecture from the pharmacist about the side effects--the most important one being that the hormone can create blood clots so it was important for me to circulate my legs if I was to sit for long periods of time like on an airplane! Duh! Totally forgot. So much for having cancer in my legs. It was in that moment that I realized what a waste of time it was to think negatively. It has truly been an easy road for me up to this point to be positive but until that speed bump comes before you and shakes your belief system, you can get caught up pretty quickly the uncertainty of it all. So I decided at that moment that I was going to be FINE and that nothing was going to stop me from beating this f'n thing. And just like that, I went into my scan without any anxiety and came out of it without needing to look at the results before hearing from a doctor after the weekend.
So...the results are "good" and the cancer has not spread anywhere else besides the breast and lymph nodes. I still have a long road ahead of me but my energy levels are pretty good and my skin has been holding up during radiation. Elt went out and invested in a Vitamix (yes, it's an investment!) and has been blending up some serious fruit and veggie cocktails for me--even the kids love it. I just want to enjoy every minute and make the most of my days before I have surgery. Aidan and I started a "Fun List" since we can't plan any vacations at this time and there are plenty of things to do right here in Vancouver. Last weekend we spent the day at Central Park which has two ponds filled with ducks, a trail that is surrounded by squirrels, and an awesome playground! Who knew? And I have only been living here for 30 years!
Since it's Mother's Day weekend, I want to give a special thanks to our two moms who take shifts to help us babysit, cook, and clean every week. We couldn't get through this without either one of them. I'm also so grateful to be a mom since my kids keep me smiling every day.
Happy Mom's Day, J
In the meantime, I finally got to see my radiation oncologist. This was the appointment I had been waiting for since I had not seen a doctor in 3 weeks, the last time in which I was told by my regular oncologist that I was switching to radiation. Many questions still loomed over my mind--why couldn't I have continued with a different kind of chemo? Why are we doing radiation before surgery again? Why isn't it a good idea to take this mother-of-a-thing out of my breast already? And most importantly, are we sure that we are doing the RIGHT thing?! And that's exactly how my appointment started. I said, "I need you to tell me that we are doing the right thing." My doctor put her hands on my shoulders, looked me in the eye, and told me what I needed to hear. She told me that when chemo is not working, then we need to do something completely different. Some people react to radiation and not chemo, and vice versa. The important thing was to remember that I was getting treatment right now. The order of radiation and surgery doesn't matter because I need both in the end. However, to do radiation first will give me a better surgical outcome because if the tumour shrinks away from the skin more, then they won't have to graft skin from elsewhere. Also, radiation treats the lymph nodes in the neck whereas those nodes will not be removed in surgery (only the ones under the arm will be removed). She also told me the pain the in chest was due to the radiation, as well as the swelling of the breast. So I walked away from the appointment with a sigh of relief and calmed my fears.
As for the numbness in my legs, I forgot to mention earlier that I had a hormone injected in me before radiation started. The purpose is to shut off the estrogen in my body and put me in a premenopausal state. Anyways, later that night, I remembered a 10 minute lecture from the pharmacist about the side effects--the most important one being that the hormone can create blood clots so it was important for me to circulate my legs if I was to sit for long periods of time like on an airplane! Duh! Totally forgot. So much for having cancer in my legs. It was in that moment that I realized what a waste of time it was to think negatively. It has truly been an easy road for me up to this point to be positive but until that speed bump comes before you and shakes your belief system, you can get caught up pretty quickly the uncertainty of it all. So I decided at that moment that I was going to be FINE and that nothing was going to stop me from beating this f'n thing. And just like that, I went into my scan without any anxiety and came out of it without needing to look at the results before hearing from a doctor after the weekend.
So...the results are "good" and the cancer has not spread anywhere else besides the breast and lymph nodes. I still have a long road ahead of me but my energy levels are pretty good and my skin has been holding up during radiation. Elt went out and invested in a Vitamix (yes, it's an investment!) and has been blending up some serious fruit and veggie cocktails for me--even the kids love it. I just want to enjoy every minute and make the most of my days before I have surgery. Aidan and I started a "Fun List" since we can't plan any vacations at this time and there are plenty of things to do right here in Vancouver. Last weekend we spent the day at Central Park which has two ponds filled with ducks, a trail that is surrounded by squirrels, and an awesome playground! Who knew? And I have only been living here for 30 years!
Since it's Mother's Day weekend, I want to give a special thanks to our two moms who take shifts to help us babysit, cook, and clean every week. We couldn't get through this without either one of them. I'm also so grateful to be a mom since my kids keep me smiling every day.
Happy Mom's Day, J
Tuesday, April 19, 2011
My New Job
In some respect, I do feel like I got a new job because I actually have to be somewhere everyday. I just hope this "job" pays off in the end like it should! When I go into the cancer agency, the radiation unit is like an underground maze. You have to enter on the main level, go through a bunch of twists and turns following orange signs, and then take an elevator at the end of the hall to level 0 (which I didn't know existed). When you get down there, I have more hallways to navigate until I get to Unit B. They give you a folded index card, like the ones you used to get at the school library, that has all your patient information and a special number (#292). I put my card in the basket at the sign-in desk and go to the changing rooms. Outside the changing room is where all the cloth bags are hung which holds the hospital gown I wear every time and the number on my card. Once I am changed, I hang out in the waiting area and wait for my name to be called. The waiting area is really big and welcoming with a large skylight right in the middle of the room. There are several tables with 1000 piece puzzles on them and a large screen t.v. There are 10 patients are sitting around in their gowns waiting for their names to be called. Most of them are by themselves since this is a daily trek which I'm sure I will be doing alone after this week as well.
Radiation is administered by 2 radiation therapists--all of which seem asian, young, and really peppy. They have two people so there is less room for error when setting up the machines which is a very technical task. Once I lay down on the bed and put my arms above my head, an x-ray -like machine gets placed near me and they start calling out a bunch of coordinates so they can align the lasers to the exact position that is outlined in my file by the radiation oncologist. There were also 3 pin prick tattoos placed around my breast at an earlier appointment which they also use as placement markers. Lights are dimmed so they can position the lasers and once that is done, they leave the room, flip the lights on, and let the machine do the work. There is a green/red light that beeps when the machine is on. The machine beeps for anywhere from 5 seconds to 10 seconds depending on the position. I am radiated from each side, and from the top and bottom. The radiologists come in and out to reset the machine a few times and once my hands have completely lost circulation and fallen asleep, I know we're done. It only takes about 10-15 minutes and is a painless process. My skin is feeling a bit sensitive already, like a slight burn, but I just keep applying lotion. I thought all the precautionary things they told me was for wimps until I leaned over the stove a bit too long yesterday and felt the heat come up on my chest--ouch!
I had a PET scan scheduled for tomorrow but now is delayed until next week because they are waiting for some part to come in. So much for private healthcare! Money definitely does not solve all problems. Patience, patience, patience...this is my biggest lesson of all.
Happy Easter, J
Radiation is administered by 2 radiation therapists--all of which seem asian, young, and really peppy. They have two people so there is less room for error when setting up the machines which is a very technical task. Once I lay down on the bed and put my arms above my head, an x-ray -like machine gets placed near me and they start calling out a bunch of coordinates so they can align the lasers to the exact position that is outlined in my file by the radiation oncologist. There were also 3 pin prick tattoos placed around my breast at an earlier appointment which they also use as placement markers. Lights are dimmed so they can position the lasers and once that is done, they leave the room, flip the lights on, and let the machine do the work. There is a green/red light that beeps when the machine is on. The machine beeps for anywhere from 5 seconds to 10 seconds depending on the position. I am radiated from each side, and from the top and bottom. The radiologists come in and out to reset the machine a few times and once my hands have completely lost circulation and fallen asleep, I know we're done. It only takes about 10-15 minutes and is a painless process. My skin is feeling a bit sensitive already, like a slight burn, but I just keep applying lotion. I thought all the precautionary things they told me was for wimps until I leaned over the stove a bit too long yesterday and felt the heat come up on my chest--ouch!
I had a PET scan scheduled for tomorrow but now is delayed until next week because they are waiting for some part to come in. So much for private healthcare! Money definitely does not solve all problems. Patience, patience, patience...this is my biggest lesson of all.
Happy Easter, J
Friday, April 15, 2011
Moving Onto Radiation
I saw my oncologist last week and we decided that since the chemotherapy wasn't making anymore difference to the tumour, we are moving onto radiation. I had a ct scan done earlier this week in preparation for radiation and had received a call today for radiation on Monday morning. Radiation will be everyday for 5 1/2 weeks, excluding weekends and holidays. The appointment times will change daily, depending on doctors' schedules. I will be seen by a radiation oncologist once a week during the treatment to check my progress. Side effects will mostly be fatigue and soreness to the skin. I ordered some fancy radiation cream online so I hope this will deter any nasty side effects.
So is this good news or bad news? Well, it's neither. However, after reading some forums online, this is common protocol to change treatments. Many patients don't react positively to a particular type of treatment whether it be chemo, hormone therapy, or other drugs, so they will try something else. There are many types of breast cancer out there and although they have standard forms of treatment for the types they know, nothing is guaranteed.
Radiation is a more targeted approach because it zaps the tumour and nearby lymph nodes directly and works to eliminate the cancer cells at the source, rather than the chemo which works to kill cancer cells that could be floating in your body. Even though this particular chemo drug didn't do any major damage to the tumour, it could have still been eliminating other cancer cells that were not detectable by scans (scans can only detect clusters of cancer cells). I am looking forward to the next phase of treatment because if something's not working, I'm ready to move on.
I have a bone and ct scan scheduled for end of May but I might take matter into my own hands and go to a private clinic to get a PET scan which only has a 3 day wait. A PET scan gives a much more detailed picture of where cancer is in your body. To get an update on my status asap would be beneficial since this would give me the confidence to go ahead with radiation if the scan came out well. If the scan showed the cancer has spread, I would rather change the treatment plan now before getting too far along into radiation. Here's more information on PET scans if you're interested: http://www.breastcancer.org/symptoms/testing/types/pet.jsp
The good news is that my hair can start growing back! I can already see the peach fuzz!
Love, J
So is this good news or bad news? Well, it's neither. However, after reading some forums online, this is common protocol to change treatments. Many patients don't react positively to a particular type of treatment whether it be chemo, hormone therapy, or other drugs, so they will try something else. There are many types of breast cancer out there and although they have standard forms of treatment for the types they know, nothing is guaranteed.
Radiation is a more targeted approach because it zaps the tumour and nearby lymph nodes directly and works to eliminate the cancer cells at the source, rather than the chemo which works to kill cancer cells that could be floating in your body. Even though this particular chemo drug didn't do any major damage to the tumour, it could have still been eliminating other cancer cells that were not detectable by scans (scans can only detect clusters of cancer cells). I am looking forward to the next phase of treatment because if something's not working, I'm ready to move on.
I have a bone and ct scan scheduled for end of May but I might take matter into my own hands and go to a private clinic to get a PET scan which only has a 3 day wait. A PET scan gives a much more detailed picture of where cancer is in your body. To get an update on my status asap would be beneficial since this would give me the confidence to go ahead with radiation if the scan came out well. If the scan showed the cancer has spread, I would rather change the treatment plan now before getting too far along into radiation. Here's more information on PET scans if you're interested: http://www.breastcancer.org/symptoms/testing/types/pet.jsp
The good news is that my hair can start growing back! I can already see the peach fuzz!
Love, J
Tuesday, March 22, 2011
Another Date Day
Yes, this is what we have resorted to--doctor days are date days. These are the days in which Elt and I get some time to ourselves, a chance to have a quiet lunch, and then find different ways to kill time. Usually, there are two appointments in one day--a blood test which only takes about 10 minutes and then a two hour wait before seeing the doctor. Yesterday was my chemo day and I had an additional blood test two hours prior to the chemo to make sure my blood counts were high enough to continue with the treatment. Luckily, I got a pass and things went on as planned. Otherwise, I would've had to wait another week!
Our usual spots for lunch have been mostly of the asian variety. There's the Great Wall for shanghai dumplings and noodles, Tropika for deep fried tofu and seafood fried rice, and our favourite of all, iCafe. We like iCafe the best because it's only a block down from the cancer agency and they give you free parking in their garage (a secret only known to regular customers like Elt's mom). After getting ripped off for parking underground for many visits earlier on, we finally found out street parking was actually a lot cheaper (or Elt just waiting in the car until my blood work was done and not pay meter at all!). Well, now we just conveniently leave our car in the iCafe lot even after lunch and sneak back in when chemo's over, hehe. What else do we do to waste 2 hours? Well, there's London Drugs, Artigiano, Whole Foods, ToysRUs and of course Home Sense which we've been quite often!
Once we arrive at the chemo room, we are greeted by a friendly nurse who acts a little like a flight attendant. She tries to get you as comfy as possible by warming up your veins with a hot wet towel and a warm blanket. Then she even offers a variety of drinks--juice, pop, water. Volunteers visit with free coffee, tea, or books. If you are really lucky, there's a friendly face in the room and you can chat with them to let the time pass. Yesterday, we met a woman who just came back from Palm Springs and was sharing her traveling experience.
Before any i.v. bag gets hooked up, they always verify your birthdate and name. It gets announced to the rest of the room and I am usually a little coy about it since I am always the youngest one there. You always hear birth years like 35 and 46, and here I am at 76. The one thing I can't stop paying attention to is the size of people's files. My friend pointed this out to me once and now I can't help but notice! The nurse lays them out on the counter in the order of arrival so she doesn't get mixed up with her notes. Mine is always the thinnest (thank god) but yesterday, both ladies had quite large files and I know that one of them had a recurrence.
The other thing you notice in the chemo room are the different types of chemo that everyone gets. There are so many treatments and types of cancer that I've never encountered anyone on exactly the same thing as me. One time I saw a woman who needed to be on a stretcher and rotated every 15 minutes. The woman next to me yesterday only had chemo for 10 minutes. By the time the nurse explained the side effects, she was done! My chemo requires me to wear these oven mitts that have been stored in the freezer. The cold gloves have to be worn 15 minutes before the chemo, during the chemo, and then another 15 minutes afterwards. It's supposed to minimize the circulation of the blood in the your fingernails to prevent discolouring or brittleness. My response to that was, "What about my toenails?!" Well, they don't protect your feet for hygienic reasons--go figure! Who needs their toenails anyway, right?
I am on my second day post-chemo and I already had to cook my own breakfast this morning as well as help make dinner! The VIP service is definitely dwindling around here. At least I still have a good supply of blueberry muffins due to a muffin fairy that keeps our supplies up! Just feel a little fatigue but the other side effects are combatted with meds and frequent mouth washing.
I found out that after my last chemo next month, I will have a 4 week rest and then have 5 1/2 weeks of daily radiation (no weekends). Aftter that, I will get another 4 week break and then will have surgery and reconstruction simultaneously. So, I'm just approaching the half way mark at this time but I am looking forward to not having chemo anymore because there's a lot of work that goes along with it--long waiting times for appointments, injections, and meds.
Aidan just turned the big 5 last week and Liam has finally taken his first steps. Time passes by so quickly you really have to appreciate it all!
Love, J
Our usual spots for lunch have been mostly of the asian variety. There's the Great Wall for shanghai dumplings and noodles, Tropika for deep fried tofu and seafood fried rice, and our favourite of all, iCafe. We like iCafe the best because it's only a block down from the cancer agency and they give you free parking in their garage (a secret only known to regular customers like Elt's mom). After getting ripped off for parking underground for many visits earlier on, we finally found out street parking was actually a lot cheaper (or Elt just waiting in the car until my blood work was done and not pay meter at all!). Well, now we just conveniently leave our car in the iCafe lot even after lunch and sneak back in when chemo's over, hehe. What else do we do to waste 2 hours? Well, there's London Drugs, Artigiano, Whole Foods, ToysRUs and of course Home Sense which we've been quite often!
Once we arrive at the chemo room, we are greeted by a friendly nurse who acts a little like a flight attendant. She tries to get you as comfy as possible by warming up your veins with a hot wet towel and a warm blanket. Then she even offers a variety of drinks--juice, pop, water. Volunteers visit with free coffee, tea, or books. If you are really lucky, there's a friendly face in the room and you can chat with them to let the time pass. Yesterday, we met a woman who just came back from Palm Springs and was sharing her traveling experience.
Before any i.v. bag gets hooked up, they always verify your birthdate and name. It gets announced to the rest of the room and I am usually a little coy about it since I am always the youngest one there. You always hear birth years like 35 and 46, and here I am at 76. The one thing I can't stop paying attention to is the size of people's files. My friend pointed this out to me once and now I can't help but notice! The nurse lays them out on the counter in the order of arrival so she doesn't get mixed up with her notes. Mine is always the thinnest (thank god) but yesterday, both ladies had quite large files and I know that one of them had a recurrence.
The other thing you notice in the chemo room are the different types of chemo that everyone gets. There are so many treatments and types of cancer that I've never encountered anyone on exactly the same thing as me. One time I saw a woman who needed to be on a stretcher and rotated every 15 minutes. The woman next to me yesterday only had chemo for 10 minutes. By the time the nurse explained the side effects, she was done! My chemo requires me to wear these oven mitts that have been stored in the freezer. The cold gloves have to be worn 15 minutes before the chemo, during the chemo, and then another 15 minutes afterwards. It's supposed to minimize the circulation of the blood in the your fingernails to prevent discolouring or brittleness. My response to that was, "What about my toenails?!" Well, they don't protect your feet for hygienic reasons--go figure! Who needs their toenails anyway, right?
I am on my second day post-chemo and I already had to cook my own breakfast this morning as well as help make dinner! The VIP service is definitely dwindling around here. At least I still have a good supply of blueberry muffins due to a muffin fairy that keeps our supplies up! Just feel a little fatigue but the other side effects are combatted with meds and frequent mouth washing.
I found out that after my last chemo next month, I will have a 4 week rest and then have 5 1/2 weeks of daily radiation (no weekends). Aftter that, I will get another 4 week break and then will have surgery and reconstruction simultaneously. So, I'm just approaching the half way mark at this time but I am looking forward to not having chemo anymore because there's a lot of work that goes along with it--long waiting times for appointments, injections, and meds.
Aidan just turned the big 5 last week and Liam has finally taken his first steps. Time passes by so quickly you really have to appreciate it all!
Love, J
Thursday, February 24, 2011
Lymph Nodes Clear!
I saw my doctor today and got some great news. She did an examination on me and couldn't feel the lumps in my lymph nodes anymore!! I was like, "Are you sure?" She casually replies, "Yes. So early..." She went on to tell me that estrogen-positive tumors like mine don't shrink or melt away like estrogen-negative tumors. She said if we stop the cancer from advancing, the treatment is doing its job but if the cancer can regress, that's even better. So, it looks like we are heading towards the right direction! Yippee!
My doctor also brought out the measuring tape to measure the size of the tumor. Since many people have been curious of this progress, here's more good news:
Before: 11cm x 11cm
Now: 9cm x 7.5cm
There are 3 more chemo treatments starting Monday (moved from Friday). I have been saving my tears for good news so let the tears flow...
Cheers! J
My doctor also brought out the measuring tape to measure the size of the tumor. Since many people have been curious of this progress, here's more good news:
Before: 11cm x 11cm
Now: 9cm x 7.5cm
There are 3 more chemo treatments starting Monday (moved from Friday). I have been saving my tears for good news so let the tears flow...
Cheers! J
Friday, February 18, 2011
No Genetic Mutation!!
I received the great news yesterday over the phone (given as an option rather than having to go all the way back to the office). Not having the gene means that my cancer is not hereditary but is sporadic (as in the majority of cases). This also means that I will not be getting a double mastectomy and I won't need to remove my ovaries as a precautionary measure. I could still have my ovaries removed as some do to reduce the amount of estrogen in the body but I would need to do more research on that. This news not only simplified my surgical options, but it also freed my immediate family of genetic testing as well. Although they have a slightly higher chance of cancer compared to the rest of the population due to the fact that I am a close relative, their chances will not be increased by 3 or 4 times the norm.
To hear such good news brought out a flood of emotions. I mostly felt elated beyond belief but it was also the end of a tough two weeks. The day after I wrote my last blog my throat became all swollen up to the back of my neck. We called the doctor hotline at the cancer agency and I was told I was probably "fighting off something" and that a little tylenol would help. It went away in two days days. Then my mouth started developing a film around the insides and my lips were swollen on the verge of mouth sores. I was also having a lot of trouble sleeping at night and I lost the sharpness of my taste buds. These side effects were a long time coming and were on the list of things to come. However, because they were more long-lasting, I felt a more permanent sense of "sick". Of course I always feel sick right after chemo but once the week passes, I expect to feel my normal self again. It didn't happen this time. It's been two weeks now, I can say that I am almost there but I don't think I will ever feel as good as before. It just feels like my body's always fighting off a bug. This will be as good as it gets and it's a new normal that I will have to get used to and not get too hung up about.
So in the midst of not feeling as good previously and waiting for these test results, it has been a long two weeks. I am going to hold on to this good news though as I prepare to see my doctors again to finalize the details of the next few months.
On another note, I registered Aidan for kindergarten the other day. Can't believe he's going to full-day next year. Before my duty day at his preschool, he said he didn't want me to be in his class because he didn't want me to watch him play with his "girlfriend", Mackenzie. I had to convince him that I would not interfere! What is happening to our children?!
Love, J
To hear such good news brought out a flood of emotions. I mostly felt elated beyond belief but it was also the end of a tough two weeks. The day after I wrote my last blog my throat became all swollen up to the back of my neck. We called the doctor hotline at the cancer agency and I was told I was probably "fighting off something" and that a little tylenol would help. It went away in two days days. Then my mouth started developing a film around the insides and my lips were swollen on the verge of mouth sores. I was also having a lot of trouble sleeping at night and I lost the sharpness of my taste buds. These side effects were a long time coming and were on the list of things to come. However, because they were more long-lasting, I felt a more permanent sense of "sick". Of course I always feel sick right after chemo but once the week passes, I expect to feel my normal self again. It didn't happen this time. It's been two weeks now, I can say that I am almost there but I don't think I will ever feel as good as before. It just feels like my body's always fighting off a bug. This will be as good as it gets and it's a new normal that I will have to get used to and not get too hung up about.
So in the midst of not feeling as good previously and waiting for these test results, it has been a long two weeks. I am going to hold on to this good news though as I prepare to see my doctors again to finalize the details of the next few months.
On another note, I registered Aidan for kindergarten the other day. Can't believe he's going to full-day next year. Before my duty day at his preschool, he said he didn't want me to be in his class because he didn't want me to watch him play with his "girlfriend", Mackenzie. I had to convince him that I would not interfere! What is happening to our children?!
Love, J
Saturday, February 5, 2011
New Chemo Drug Rocks
I switched chemo drugs yesterday to docetaxel which is not supposed to affect your stomach, but has severe muscle aches instead. My doctor gave me some meds to counter the side effects of the aches and it has worked miracles because I don't feel any pain at all. I had chemo at 12pm yesterday, took a short nap when I got home, and was able to come out to enjoy dinner with my family (something I'm not usually able to do until about 3 days later). My appetite is normal and I feel like I eat what I want without worrying about how it's going to affect how I feel. In general, I didn't feel half as tired as I had been during past treatments and yesterday, I already felt like it was Day 5!
Today I woke up, helped dressed the kids, and even did some dishes. Now mind you, I do feel like I have had chemo but my energy level is at about 80% right now and it feels great. I am going to take it easy nonetheless and stay home a few days because with the docetaxel, it hits the immunity at a faster rate so I will be vulnerable to getting sick.
I have a few things pending this month--genetic test results, final decision on surgery, and the results of my critical illness insurance claim. I will also see a radiologist next month to find out more about radiation therapy and what that entails. Will keep everyone posted.
J
Today I woke up, helped dressed the kids, and even did some dishes. Now mind you, I do feel like I have had chemo but my energy level is at about 80% right now and it feels great. I am going to take it easy nonetheless and stay home a few days because with the docetaxel, it hits the immunity at a faster rate so I will be vulnerable to getting sick.
I have a few things pending this month--genetic test results, final decision on surgery, and the results of my critical illness insurance claim. I will also see a radiologist next month to find out more about radiation therapy and what that entails. Will keep everyone posted.
J
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