Tuesday, February 7, 2012
Monday, February 6, 2012
Sunday, February 5, 2012
Service for our dear Jessica
Thank you everybody for your condolesenses and supporting our family during our journey and this most difficult time. A service will be held on Sunday, Feb. 12th at Forest Lawn Funeral Home in Burnaby at 10am and a reception immediately afterwards to celebrate her life at a yet to be determined location.
Sunday, January 22, 2012
The Fight Continues - Posting by Elton
It's been a while since I have posted as a lot has happened but it's been very difficult to get even a brief moment to gather my thoughts. That's why tweeting has been a lot easier but even then, it's hard to even get the full picture of what is going on.
After my last posting, Jessica's legs were getting increasingly weak making it very difficult for her to walk. Doctors were concerned that maybe the disease could have spread to her spinal cord so they ordered an MRI to rule that out. For those who have never had an MRI done before, you lay on a bed and are slide inside a machine and lay still while the machine scans you - similar to a tanning bed but in a tunnel. It also could be very warm in there and it makes a loud humming noise. Jess gets nauseous very easily and when she went in for her MRI, Jess was already quite weak from the effects of her new pain killing medication so it wasn't a surprise that she had to stop the scan after a few minutes into it. But because they start from the head down, they were able to get some imaging in the short time she was in there and the results didn't come out positive. The scans had shown that Jess's disease had spread to the tissues at the base of her neck, around the top of the spine area. The tissues there are very similar to the ones in the brain so they weren't surprised that a tumour had developed there. They recommended 5 treatments of radiation to the area, similar to what she had on her brain. The radiation could hopefully relieve her back pain and prevent more spreading of the disease down her spine but would add more toxicity to the body and a sun burn feeling on the surface of where radiation would be treated. Side effects were minimal compared to the huge plus side so she decided to do the treatment.
After two radiation treatments to the area, they wanted another attempt to complete the MRI. This time, they gave her Ativan, a drug to control her anxiety and relax her. It worked and she was able to sit through it, but it still required a lot of work for Jess to remain focused and not abort it. I was waiting outside the lab when our radio oncologist, Dr. N, walked by without making any eye contact. I called him back and asked if he had an opportunity to see the imaging and he said yes but would need to review it with his colleagues first before having a discussion with us. I've spoken to many doctors during this journey and when they say that, it's never good. Later that evening, Dr. N came to our room and told us what we didn't need to hear. The scan had shown speckles of the disease spread down the canal of her spinal cord which is the likely cause of her having difficulty walking, causing her back pains and maintaining any strength in her legs. With the way it had spread, they couldn't radiate on it because radiation works best when they can target one specific area (like a tumor) rather than the length of the back. Jessica could continue with the remaining three radiations for the base of her neck but it would just weaken her further without any added benefits when the disease could pop back again in the same area.
This new diagnosis left me with such incredible guilt because I had been trying to push Jess to walk, get up and move so she could progress and get better. I was determined to have her fight with every ounce of energy when all along, she's been trying to tell me she couldn't. But upon hearing this news, how the heck could she? Jess had always been a do-er, getting things done, and never giving up. If she could have walked, or even had the strength to attempt it, she would have done it already. I was more concerned about what I wanted her to do rather than what she COULD do. I was trying to get her to do things to comfort me and make me feel at ease, that she is improving, rather than listening to her on what she could realistically do and it's another lesson for me on how I can be a better caregiver to her.
If radiation is not an option, then what could we do? Dr. N specializes in radiation and couldn't speak of other possible, if any, treatments. Our general oncologist Dr G was also out of town at the time and wasn't expected to be back until 5 days later. This was a frustrating and stressful time because there were so many questions that needed to be answered and the one person who could answer them was not going to return until 5 days later. We were seeing so many residents and other types of doctors but none of them could give us any concrete plans as they wanted to defer to Dr. G. On top of that, I couldn't be at the hospital until after I had dropped off my son at school which meant being at hospital at 9:30am, leave the hospital at 2:30pm to return in time to pick him up, feed kids dinner, put them to sleep, return to the hospital for a few more hours in the evening while I have relatives at home with boys, go home to sleep, and start the day over again tomorrow. So I was only able to spend about 5 hours with Jess a day and my opportunity to speak to doctors were limited as they did their rounds either before my arrival or after I leave. So the doctors would speak to Jess on her own but I couldn't possibly expect Jess to remember in her medicated state what was told to her and then have to rehash everything back to me. After expressing my frustrations to counsellors and nurses, and even a verbal assault on a doctor, I caught their attention and they had a colleague of Dr. G speak to me.
Dr. A is a pain management specialist who knew Jess' file well since she prescribes her the pain medications and have been working with her for about a couple of months. I came in one evening and she pulled me aside while Jessica was asleep to break the news to me that there were no other treatments available that they could offer Jessica for her disease. Surgery couldn't be done and chemo isn't an option due to it's history of resistance in Jess' previous chemo treatments. They said that there is a 1% chance that chemo may work but not worth putting Jessica through the punishment with Jess' immunity so low and her being so weak. They feel it's best that she uses the time now to spend with friends and family. She continued talking but all I was thinking was what I was going to do now. I was in denial, then the thoughts of my life with the boys without her, and how I'm going to tell Jess that doctors have given her an expiry date.
The talk with Jess was a very emotional one and like everything else in this journey, surreal. We cried, talked about our past, the future, what to do with the boys, the what ifs, and even had some laughs along the way. But the one thing that came out of our conversation was our unwillingness to accept a doctor's opinion on her fate. We realized that this changes nothing in our plans and will continue to fight. Jessica is a special human being with incredible determination and strength and we were going to continue to explore other ways when science has failed us.
But yet, another test of Jess' will and strength came shortly to her on the evening of January 13th. While helping her sit up on her bed, she quickly had a shortness of breath and was starting to panic. Unable to speak, she motioned for me to quickly lay her back down and call for help. I yelled for the nurses and doctors while seeing Jessica laying on the bed, with her eyes closed, working hard and desperately take in every breath, with her ribs rising and lowering each time. Aidan was in the room playing on my iPad and had to rush him out while blocking him from the view of Jess' bed. Within a couple of minutes, there were a team of people giving her oxygen masks, connecting her with monitoring devices, giving her needles with medication, playing with dials and pushing frantically at buttons. Medical staff were coming and going while I sat there helpless with her eyes sometimes opening to take a glance at me. Seeing her in such difficult to breathe, I couldn't help but think that this could be it for her and I am in this room watching it all unfold before me. After about 30 minutes, a doctor pulled me aside and said that there is nothing else they could do for her and it was all up to her and God now. They think that a blood clot occurred in her lungs and the situation was life threatening. He suggested I notify all her family that night and for me to stay over in case she doesn't make it to the morning. But he said considering the situation and the condition she's in, he was baffled by her ability to absorb oxygen and amazed at Jess' will to live!
I am not a religious man but that night, I needed help to carry me through when I was lost, confused and scared. I seeked out our friend Pastor Marvin, who we had only met just that week, to help me and Jessica. He came at midnight and stayed with us until 4am to pray for her - the more he prayed, her breathing was getting better. Call it coincidence or call it divine intervention but by the next morning, Jessica was breathing a lot easier. I didn't sleep a wink that night with my eyes completely focused on her in case she needed help. At around 7:30am, she was weakly moving her fingers, in a snapping motion, to gesture me over. With eyes closed, she attempted to utter some words, couldn't get it out and gestured of writing with a pen. I brought over the pen and pad and she slowly wrote some directions and messages to me with whatever energy she had in her. Whatever she was writing couldn't come soon enough but at the same time, was worried that this was going to be her way of communicating to me from here on end - that I may never hear her speak again. As I'm typing this I realized I could go in great detail with everything and this could be several paragraphs, if not pages long and have already wrote a long post. I will spare you with the details but will let you know that Jessica has recovered from this incident, is able to speak, is eating - pretty much everything she was doing prior to this episode, including joking and laughing too. She has been taking everything that has been thrown at her and I am running out of adjectives to describe how incredible she is. I would like to continue more of what has transpired the last couple weeks with a post the next few days so hopefully I can find some time.
In the meantime, I want to let everyone know that though Jessica and I have been unable to reply to all of everyone's messages via Facebook, email, texts, Twitter, etc. rest assured we have been receiving every single one of them and appreciate all the encouragement and support. Please continue sending your prayers and positive thoughts!
After my last posting, Jessica's legs were getting increasingly weak making it very difficult for her to walk. Doctors were concerned that maybe the disease could have spread to her spinal cord so they ordered an MRI to rule that out. For those who have never had an MRI done before, you lay on a bed and are slide inside a machine and lay still while the machine scans you - similar to a tanning bed but in a tunnel. It also could be very warm in there and it makes a loud humming noise. Jess gets nauseous very easily and when she went in for her MRI, Jess was already quite weak from the effects of her new pain killing medication so it wasn't a surprise that she had to stop the scan after a few minutes into it. But because they start from the head down, they were able to get some imaging in the short time she was in there and the results didn't come out positive. The scans had shown that Jess's disease had spread to the tissues at the base of her neck, around the top of the spine area. The tissues there are very similar to the ones in the brain so they weren't surprised that a tumour had developed there. They recommended 5 treatments of radiation to the area, similar to what she had on her brain. The radiation could hopefully relieve her back pain and prevent more spreading of the disease down her spine but would add more toxicity to the body and a sun burn feeling on the surface of where radiation would be treated. Side effects were minimal compared to the huge plus side so she decided to do the treatment.
After two radiation treatments to the area, they wanted another attempt to complete the MRI. This time, they gave her Ativan, a drug to control her anxiety and relax her. It worked and she was able to sit through it, but it still required a lot of work for Jess to remain focused and not abort it. I was waiting outside the lab when our radio oncologist, Dr. N, walked by without making any eye contact. I called him back and asked if he had an opportunity to see the imaging and he said yes but would need to review it with his colleagues first before having a discussion with us. I've spoken to many doctors during this journey and when they say that, it's never good. Later that evening, Dr. N came to our room and told us what we didn't need to hear. The scan had shown speckles of the disease spread down the canal of her spinal cord which is the likely cause of her having difficulty walking, causing her back pains and maintaining any strength in her legs. With the way it had spread, they couldn't radiate on it because radiation works best when they can target one specific area (like a tumor) rather than the length of the back. Jessica could continue with the remaining three radiations for the base of her neck but it would just weaken her further without any added benefits when the disease could pop back again in the same area.
This new diagnosis left me with such incredible guilt because I had been trying to push Jess to walk, get up and move so she could progress and get better. I was determined to have her fight with every ounce of energy when all along, she's been trying to tell me she couldn't. But upon hearing this news, how the heck could she? Jess had always been a do-er, getting things done, and never giving up. If she could have walked, or even had the strength to attempt it, she would have done it already. I was more concerned about what I wanted her to do rather than what she COULD do. I was trying to get her to do things to comfort me and make me feel at ease, that she is improving, rather than listening to her on what she could realistically do and it's another lesson for me on how I can be a better caregiver to her.
If radiation is not an option, then what could we do? Dr. N specializes in radiation and couldn't speak of other possible, if any, treatments. Our general oncologist Dr G was also out of town at the time and wasn't expected to be back until 5 days later. This was a frustrating and stressful time because there were so many questions that needed to be answered and the one person who could answer them was not going to return until 5 days later. We were seeing so many residents and other types of doctors but none of them could give us any concrete plans as they wanted to defer to Dr. G. On top of that, I couldn't be at the hospital until after I had dropped off my son at school which meant being at hospital at 9:30am, leave the hospital at 2:30pm to return in time to pick him up, feed kids dinner, put them to sleep, return to the hospital for a few more hours in the evening while I have relatives at home with boys, go home to sleep, and start the day over again tomorrow. So I was only able to spend about 5 hours with Jess a day and my opportunity to speak to doctors were limited as they did their rounds either before my arrival or after I leave. So the doctors would speak to Jess on her own but I couldn't possibly expect Jess to remember in her medicated state what was told to her and then have to rehash everything back to me. After expressing my frustrations to counsellors and nurses, and even a verbal assault on a doctor, I caught their attention and they had a colleague of Dr. G speak to me.
Dr. A is a pain management specialist who knew Jess' file well since she prescribes her the pain medications and have been working with her for about a couple of months. I came in one evening and she pulled me aside while Jessica was asleep to break the news to me that there were no other treatments available that they could offer Jessica for her disease. Surgery couldn't be done and chemo isn't an option due to it's history of resistance in Jess' previous chemo treatments. They said that there is a 1% chance that chemo may work but not worth putting Jessica through the punishment with Jess' immunity so low and her being so weak. They feel it's best that she uses the time now to spend with friends and family. She continued talking but all I was thinking was what I was going to do now. I was in denial, then the thoughts of my life with the boys without her, and how I'm going to tell Jess that doctors have given her an expiry date.
The talk with Jess was a very emotional one and like everything else in this journey, surreal. We cried, talked about our past, the future, what to do with the boys, the what ifs, and even had some laughs along the way. But the one thing that came out of our conversation was our unwillingness to accept a doctor's opinion on her fate. We realized that this changes nothing in our plans and will continue to fight. Jessica is a special human being with incredible determination and strength and we were going to continue to explore other ways when science has failed us.
But yet, another test of Jess' will and strength came shortly to her on the evening of January 13th. While helping her sit up on her bed, she quickly had a shortness of breath and was starting to panic. Unable to speak, she motioned for me to quickly lay her back down and call for help. I yelled for the nurses and doctors while seeing Jessica laying on the bed, with her eyes closed, working hard and desperately take in every breath, with her ribs rising and lowering each time. Aidan was in the room playing on my iPad and had to rush him out while blocking him from the view of Jess' bed. Within a couple of minutes, there were a team of people giving her oxygen masks, connecting her with monitoring devices, giving her needles with medication, playing with dials and pushing frantically at buttons. Medical staff were coming and going while I sat there helpless with her eyes sometimes opening to take a glance at me. Seeing her in such difficult to breathe, I couldn't help but think that this could be it for her and I am in this room watching it all unfold before me. After about 30 minutes, a doctor pulled me aside and said that there is nothing else they could do for her and it was all up to her and God now. They think that a blood clot occurred in her lungs and the situation was life threatening. He suggested I notify all her family that night and for me to stay over in case she doesn't make it to the morning. But he said considering the situation and the condition she's in, he was baffled by her ability to absorb oxygen and amazed at Jess' will to live!
I am not a religious man but that night, I needed help to carry me through when I was lost, confused and scared. I seeked out our friend Pastor Marvin, who we had only met just that week, to help me and Jessica. He came at midnight and stayed with us until 4am to pray for her - the more he prayed, her breathing was getting better. Call it coincidence or call it divine intervention but by the next morning, Jessica was breathing a lot easier. I didn't sleep a wink that night with my eyes completely focused on her in case she needed help. At around 7:30am, she was weakly moving her fingers, in a snapping motion, to gesture me over. With eyes closed, she attempted to utter some words, couldn't get it out and gestured of writing with a pen. I brought over the pen and pad and she slowly wrote some directions and messages to me with whatever energy she had in her. Whatever she was writing couldn't come soon enough but at the same time, was worried that this was going to be her way of communicating to me from here on end - that I may never hear her speak again. As I'm typing this I realized I could go in great detail with everything and this could be several paragraphs, if not pages long and have already wrote a long post. I will spare you with the details but will let you know that Jessica has recovered from this incident, is able to speak, is eating - pretty much everything she was doing prior to this episode, including joking and laughing too. She has been taking everything that has been thrown at her and I am running out of adjectives to describe how incredible she is. I would like to continue more of what has transpired the last couple weeks with a post the next few days so hopefully I can find some time.
In the meantime, I want to let everyone know that though Jessica and I have been unable to reply to all of everyone's messages via Facebook, email, texts, Twitter, etc. rest assured we have been receiving every single one of them and appreciate all the encouragement and support. Please continue sending your prayers and positive thoughts!
Tuesday, January 3, 2012
A Long December - Posting by Elton
It's been awhile since Jess has posted but if you have been following our tweets, you could see how busy we have been. Even with the tweets, it's probably difficult to gain a sense of what's going on so here goes.
On Jess' last posting, she had her lungs drained of any fluids in hopes that it would help improve her breathing and discomfort. The theory was that the fluid was constricting her lungs from expanding so draining it should allow room for the lungs to open up again. However, on the days following the procedure, Jess showed no improvement. After more testing and scans, they concluded that the outside lining of her lungs (the pleura) had been infected with the disease and that it has hardened making it impossible for her lungs to expand, even with the absence of the fluid. They called this trapped lung.
Meanwhile, the lesions in her brain had also grown since her surgery from November and doctors were pushing for Jess to reconsider and to have whole brain radiation. Even with the growth, Jess wanted to focus her treatment on the lungs as that was affecting her the most on a day-to-day basis and planned to re-visit the brain once it became a greater concern. She always felt radiation was inevitable but wanted to last as long so she could to seek relief for her lungs. Since she had pretty good success on her first round of chemo pill treatment, she and Dr. G agreed to continue on with another round of it and see how things would progress. Jess also wanted the chemo drug so that she could integrate it with the oncothermia treatments she had been getting in Langley, which studies have shown positive results when the two treatments were in conjunction. But this time around, the chemo didn't make her feel well at all from her very first dosage. She was experiencing a lot of side effects, the worse being zapping nerve pains in her ribs area, restlessness, nausea and insomnia. After a couple of days, the discomfort becoming so unbearable, she had to discontinue the treatment so that she could somehow get some rest but the side effects never subsided. Jess' insomnia progressively grew worse and continued to complain of severe pain, restlessness and antsyness. No matter how hard she tried, whether it be meditation, soft music, massaging of legs, she just couldn't sleep, at one point for 48 hours straight. Eventually, she was referred to the pain management clinic who prescribed her some pain meds and other medication to relax her and help her sleep. She tried a variety of medication but it made matters worse and caused even more side effects. We were hoping for solutions but it was frustrating as it felt like the doctors were guessing and going by trial and error in hopes of finding some kind of relief for her. When we saw Dr. G shortly after, she thought that some of this discomfor can be attributed to the chemo drug (second rounds of chemo treatments are sometimes more harsh than the first), side effects from the medications and possibly lesion growth that's pushing into the tissues of her brain. She again recommended whole brain radiation and with Jess left with no choice, agreed.
Whole brain radiation treatment normally lasts for a few minutes while they zap your brain, one treatment a day for ten days. But in Jess' case, they doubled the daily dosage of her radiation and to have it completed in half the time so that they could treat the disease more aggressively. Because the treatment causes swelling to the brain, Jess had to take an additional assortment of medication - one of which was a medication that she has been trying to ween off of since her surgery which causes, of all things, insomnia, anxiety, and restlessness. We explained that she's been having problems with these side effects but the dangers from the swelling outweighed our concern and they increased this medication to EIGHT times higher than what Jess was already taking and had already been trying to ween off. As expected, Jess' condition progressively got worse those next few days. There was a lot of back and forth between us and BCCA to monitor Jess' condition at this time and they had even recommended a couple of times to have her admitted into BCCA so she can get some professional care. Jess initially refused for a variety of reasons but with no signs of her condition improving, we eventually made the decision of calling BCCA and ask to be admitted which ended up to be Xmas day.
At BCCA, they are able to increase her pain meds significantly and monitor her better there with doctors and nurses on standby. Her first night there was OK but by day two, the meds were finally able to catch up to her pain and improved her ability to sleep. She continued to show improvements as the days went on while adjustments of her dosages were ongoing. During this time I would stay most of my time at the hospital, while our kids were staying with Jess' sister Grace's house. I mostly stayed overnight, spending my days balancing my time between the boys, resting or being at the hospital. When I'm not there during the day, we had friends and family who literally took turns taking three hour shifts sitting at Jess' bedside helping her whenever she needed it or watching her rest while texting me updates on how she is doing.
Jess is still at the hospital now and even though they have been able to manage her pain, she is still not ready to return home. Jess has been laying on her back for the last two weeks with little or no activity on her legs so it's very difficult for her to stand, let alone walk, on her own. The weakness in her legs is also caused by another side effect of the anti-brain swelling medication so she will need to regain some strength back in her legs through physiotherapy and rehab, as well as making sure we have some equipment at home to help her get around.
Now that school has re-started, I felt the need to provide the boys some consistency and stability even though they were receiving such great care from Grace, her husband and being with their cousins during the holidays. I have consulted with professionals with what I should do with the boys and it's important that they returned home and to have their parents, even though if it's just me, with them. So I have returned home now so that I could have dinner with them, play time, bathe and brush their teeth, prepare them for bed, make breakfast, change them, and take Aidan to school while my mom watches Liam at home. After dropping off Aidan at school, I would visit Jess at the hospital from about 9:30 - 2:30pm until I need to pick up Aidan from school and the cycle continues again in the evening.
We are supposed to have an appointment with our oncologist tomorrow so we should have a better idea in terms of how effective the radiation was, where she is at now and also what the next course of action for Jessica would be. Being at the BCCA is just a short stop in Jess' journey to recovery and we're not losing sight of our goal. Not for a moment.
It has been a very emotional holiday season that has affected so many of our closest friends and family. For myself, it has been extremely draining both emotionally and physically and at times, wondering if this is all really happening. Every thing has been a blur and I try very hard to focus on the moment, whether it be the kids or Jess, and try not to think too much about the future as I've come to terms that it's out of my control. I'm human and I'd be lying if I told you that I didn't have my tearful moments but I honestly couldn't possibly imagine how much more difficult this would be without the love and support from our friends and family who have sat by Jess' bedside, who have brought us food, taken care of our kids and played with them, those who have reached out and sent me and Jess messages of encouragement, the prayers, the talks, the laughs...it all helps us every single bit and we are really grateful. Christmas evening alone with Jess in a quiet dark hospital room really humbled me on how fragile life is but I was overwhelmed how many people sent me messages when they should have been busy with their families. We really do have a great sense of gratitude despite all this madness. Thank you so much from the bottom of our hearts! Here's hoping for a better new year for everyone and hoping that Jess would have the strength to write the next blog!
On Jess' last posting, she had her lungs drained of any fluids in hopes that it would help improve her breathing and discomfort. The theory was that the fluid was constricting her lungs from expanding so draining it should allow room for the lungs to open up again. However, on the days following the procedure, Jess showed no improvement. After more testing and scans, they concluded that the outside lining of her lungs (the pleura) had been infected with the disease and that it has hardened making it impossible for her lungs to expand, even with the absence of the fluid. They called this trapped lung.
Meanwhile, the lesions in her brain had also grown since her surgery from November and doctors were pushing for Jess to reconsider and to have whole brain radiation. Even with the growth, Jess wanted to focus her treatment on the lungs as that was affecting her the most on a day-to-day basis and planned to re-visit the brain once it became a greater concern. She always felt radiation was inevitable but wanted to last as long so she could to seek relief for her lungs. Since she had pretty good success on her first round of chemo pill treatment, she and Dr. G agreed to continue on with another round of it and see how things would progress. Jess also wanted the chemo drug so that she could integrate it with the oncothermia treatments she had been getting in Langley, which studies have shown positive results when the two treatments were in conjunction. But this time around, the chemo didn't make her feel well at all from her very first dosage. She was experiencing a lot of side effects, the worse being zapping nerve pains in her ribs area, restlessness, nausea and insomnia. After a couple of days, the discomfort becoming so unbearable, she had to discontinue the treatment so that she could somehow get some rest but the side effects never subsided. Jess' insomnia progressively grew worse and continued to complain of severe pain, restlessness and antsyness. No matter how hard she tried, whether it be meditation, soft music, massaging of legs, she just couldn't sleep, at one point for 48 hours straight. Eventually, she was referred to the pain management clinic who prescribed her some pain meds and other medication to relax her and help her sleep. She tried a variety of medication but it made matters worse and caused even more side effects. We were hoping for solutions but it was frustrating as it felt like the doctors were guessing and going by trial and error in hopes of finding some kind of relief for her. When we saw Dr. G shortly after, she thought that some of this discomfor can be attributed to the chemo drug (second rounds of chemo treatments are sometimes more harsh than the first), side effects from the medications and possibly lesion growth that's pushing into the tissues of her brain. She again recommended whole brain radiation and with Jess left with no choice, agreed.
Whole brain radiation treatment normally lasts for a few minutes while they zap your brain, one treatment a day for ten days. But in Jess' case, they doubled the daily dosage of her radiation and to have it completed in half the time so that they could treat the disease more aggressively. Because the treatment causes swelling to the brain, Jess had to take an additional assortment of medication - one of which was a medication that she has been trying to ween off of since her surgery which causes, of all things, insomnia, anxiety, and restlessness. We explained that she's been having problems with these side effects but the dangers from the swelling outweighed our concern and they increased this medication to EIGHT times higher than what Jess was already taking and had already been trying to ween off. As expected, Jess' condition progressively got worse those next few days. There was a lot of back and forth between us and BCCA to monitor Jess' condition at this time and they had even recommended a couple of times to have her admitted into BCCA so she can get some professional care. Jess initially refused for a variety of reasons but with no signs of her condition improving, we eventually made the decision of calling BCCA and ask to be admitted which ended up to be Xmas day.
At BCCA, they are able to increase her pain meds significantly and monitor her better there with doctors and nurses on standby. Her first night there was OK but by day two, the meds were finally able to catch up to her pain and improved her ability to sleep. She continued to show improvements as the days went on while adjustments of her dosages were ongoing. During this time I would stay most of my time at the hospital, while our kids were staying with Jess' sister Grace's house. I mostly stayed overnight, spending my days balancing my time between the boys, resting or being at the hospital. When I'm not there during the day, we had friends and family who literally took turns taking three hour shifts sitting at Jess' bedside helping her whenever she needed it or watching her rest while texting me updates on how she is doing.
Jess is still at the hospital now and even though they have been able to manage her pain, she is still not ready to return home. Jess has been laying on her back for the last two weeks with little or no activity on her legs so it's very difficult for her to stand, let alone walk, on her own. The weakness in her legs is also caused by another side effect of the anti-brain swelling medication so she will need to regain some strength back in her legs through physiotherapy and rehab, as well as making sure we have some equipment at home to help her get around.
Now that school has re-started, I felt the need to provide the boys some consistency and stability even though they were receiving such great care from Grace, her husband and being with their cousins during the holidays. I have consulted with professionals with what I should do with the boys and it's important that they returned home and to have their parents, even though if it's just me, with them. So I have returned home now so that I could have dinner with them, play time, bathe and brush their teeth, prepare them for bed, make breakfast, change them, and take Aidan to school while my mom watches Liam at home. After dropping off Aidan at school, I would visit Jess at the hospital from about 9:30 - 2:30pm until I need to pick up Aidan from school and the cycle continues again in the evening.
We are supposed to have an appointment with our oncologist tomorrow so we should have a better idea in terms of how effective the radiation was, where she is at now and also what the next course of action for Jessica would be. Being at the BCCA is just a short stop in Jess' journey to recovery and we're not losing sight of our goal. Not for a moment.
It has been a very emotional holiday season that has affected so many of our closest friends and family. For myself, it has been extremely draining both emotionally and physically and at times, wondering if this is all really happening. Every thing has been a blur and I try very hard to focus on the moment, whether it be the kids or Jess, and try not to think too much about the future as I've come to terms that it's out of my control. I'm human and I'd be lying if I told you that I didn't have my tearful moments but I honestly couldn't possibly imagine how much more difficult this would be without the love and support from our friends and family who have sat by Jess' bedside, who have brought us food, taken care of our kids and played with them, those who have reached out and sent me and Jess messages of encouragement, the prayers, the talks, the laughs...it all helps us every single bit and we are really grateful. Christmas evening alone with Jess in a quiet dark hospital room really humbled me on how fragile life is but I was overwhelmed how many people sent me messages when they should have been busy with their families. We really do have a great sense of gratitude despite all this madness. Thank you so much from the bottom of our hearts! Here's hoping for a better new year for everyone and hoping that Jess would have the strength to write the next blog!
Tuesday, December 6, 2011
Fluid Drained
A week ago when I saw my family doctor, we talked about draining my lungs of the extra fluid. When I was in the hospital, the scan showed that there was fluid in the lungs and I was told that if it got worse and restricted my breathing, I could get the fluid drained. I didn't know what that involved but at the time, I was more than relieved that I didn't have to do it! However, after talking to my doc, she noted some benefits of draining the fluid so I reconsidered. Basically, it would give my body one less thing to fight off and could also make the chemo work more efficiently. It could give my lungs more room to expand and therefore improve my breathing as well. Also, when there is excess fluid, there's a chance an infection could develop and I definitely don't need more complications. So, I decided to suck it up and get it done yesterday.
They performed the procedure at BCCA in a hospital-like room on the 6th floor. A respiration specialist performed the procedure with a bunch of interested parties floating around to watch since they were using some fancy ultrasound machine. I sat on the edge of the bed hunched over the bedside table on a few pillows. The anesthetic they used was just a few pokes of a needle which was much worse in my mind than what it really was. After that, I couldn't really feel a thing. They used a long needle with a tube attached to it which drained the liquid into these huge glass jars. The draining only took about 10 minutes and they stopped when I started wheezing and had shortness of breath. Although they wanted to take out 1.5 litres of liquid, we ended up only doing 1.3 litres. Yes, litres! It was a light coffee colour and I couldn't believe it came from my body. I had a chest x-ray afterwards and apparently I have more where that came from but we will see how I react in the next few days to decide if I need more drainage. I was actually having a lot of trouble breathing immediately after which set in the panic but we were able to get hold of the doctor and she said just to see how I do in the next two days. If the drainage doesn't improve the breathing, then it doesn't have anything to do with the fluid and draining it again won't do anything. The only thing then would be chemotherapy. I was in pain all last night so I didn't get much sleep so today, after the oncotherm, I actually slept for a few hours.
I'm not going to sugarcoat it--it's getting tougher emotionally for me by the day. I can be unglued at the smallest thing but I'm learning to just let it out when I can because I know repression is the worst thing for this disease. Maybe I'm having a hard time because there are so many uncertainties ahead in the next two weeks. Appointments everyday this week also doesn't help because I really don't get any time to just rest at home. Today was my last oncotherm at least so I won't have to trek to Langley for a while until we figure out the rest of my treatment plan. I will also get a head CT tomorrow to see if there has been any change in last few weeks since the surgery. Also, and this is my last complaint--I hate needles! Because I only have one arm for them to poke, it's not a pretty site and I might involuntarily hit the next person who wants "another try". Okay, I'm done.
On top of all this, I've agreed to use a fake christmas tree this year for the first time! At least Elt promised it won't be every year...Boy, I really need a vacation!
J
 |
| 1.3 Litres of fluid drained from my lungs |
I'm not going to sugarcoat it--it's getting tougher emotionally for me by the day. I can be unglued at the smallest thing but I'm learning to just let it out when I can because I know repression is the worst thing for this disease. Maybe I'm having a hard time because there are so many uncertainties ahead in the next two weeks. Appointments everyday this week also doesn't help because I really don't get any time to just rest at home. Today was my last oncotherm at least so I won't have to trek to Langley for a while until we figure out the rest of my treatment plan. I will also get a head CT tomorrow to see if there has been any change in last few weeks since the surgery. Also, and this is my last complaint--I hate needles! Because I only have one arm for them to poke, it's not a pretty site and I might involuntarily hit the next person who wants "another try". Okay, I'm done.
On top of all this, I've agreed to use a fake christmas tree this year for the first time! At least Elt promised it won't be every year...Boy, I really need a vacation!
J
Tuesday, November 29, 2011
Heading In the Right Direction
Seem like ages ago since I returned from the hospital and sat in my living room with a big sigh of relief that I actually made it home. I don't think I'll ever experience such a sense of gratitude in my life. I had to ask myself, "Did that just actually happen?! Again? Do I have nine lives?" Recovery at home has not been easy. I tried to ween off the steroids that help with brain inflammation too quickly and I almost had to go back to the hospital. Such strange neurological symptoms come up when this happens and I was experiencing imbalance and not even knowing where my left hands and legs were. Now that I've adjusted the meds properly, the symptoms have gone away and I am much better than I was last week.
Since I've been in the hospital, I have thought a lot about the last two months and how I came to come into this situation again. It's hard not to second guess my decisions along the way but I know I have to remember that everything I decided in the past was greatly thought out and it doesn't help to look back. I do know that I wanted more time for all the therapies to do it's magic but in the end, the cancer worked faster so now we have to find a different approach to gain better control of my health.
To gather a new game plan, we solicited 2 well known oncologists for opinions. Of course, both of them had differing opinions on how to treat. One wanted to go in with a harder drug to knock the cancer back, then ease off. The other wanted to start with a milder drug but do whole brain radiation which of course I'd like to avoid if possible. In the end, we decided to go with a breast cancer specialist, Dr. Gelmon, who finally spoke the plan that I wanted to hear. We saw her last week when I was in really bad shape and instead of waiting a week for a chemo appointment, we decided to start on an oral chemo pill that night right away. I knew in my gut that waiting the weekend wasn't an option because I was having difficulty sitting, standing, breathing, reading,--everything. I was completely dependent living and couldn't do anything on my own. My body needed chemo asap and even all my gurus agreed that it was time to fight back with something harder.
This chemo pill is taken everyday and works differently than the IV method just because it's a low dose that attacks it daily. You take it for 2 weeks and break for a week. Side effects so far have been minimal. I feel a bit tired and dazed but other than that, my overall functioning has improved. I can't believe I'm typing this blog because this is the first time I've typed in weeks (although this is a real exercise for my mind right now!) It has only been a week so far and we have noticed a difference in me for sure. I am also doing the oncotherm treatments with the pill which should up the efficacy but it's just a big time commitment to go to Langley 3 times a week on top of everything else. I basically have an appointment a day if I want to keep up with acupuncture and healers so I'm trying not to get over exhausted and canceling when I can.
The best thing is that yesterday, I met with Dr. G again and we finally put a plan together that I feel is right for me and not right for their protocol. Instead of jump starting to radiation this week as planned, I will remain on the chemo pill for another week since I am responding to it. Then next week, I will get a CT scan of my head to see if I will need radiation. After a couple of weeks when the cycle of meds is over, she will get a full body CT to see my progress. When we know what is working or not, we can continue with the weaker chemo or switch to the stronger one. Point is, I am going to be monitored closely and the treatment will change as needed which I am way more comfortable with than being pigeon-holed into something I don't want to do.
So I am doing better now and I will continue to get as much rest as possible and get to the healing! :)
Love, J
Since I've been in the hospital, I have thought a lot about the last two months and how I came to come into this situation again. It's hard not to second guess my decisions along the way but I know I have to remember that everything I decided in the past was greatly thought out and it doesn't help to look back. I do know that I wanted more time for all the therapies to do it's magic but in the end, the cancer worked faster so now we have to find a different approach to gain better control of my health.
To gather a new game plan, we solicited 2 well known oncologists for opinions. Of course, both of them had differing opinions on how to treat. One wanted to go in with a harder drug to knock the cancer back, then ease off. The other wanted to start with a milder drug but do whole brain radiation which of course I'd like to avoid if possible. In the end, we decided to go with a breast cancer specialist, Dr. Gelmon, who finally spoke the plan that I wanted to hear. We saw her last week when I was in really bad shape and instead of waiting a week for a chemo appointment, we decided to start on an oral chemo pill that night right away. I knew in my gut that waiting the weekend wasn't an option because I was having difficulty sitting, standing, breathing, reading,--everything. I was completely dependent living and couldn't do anything on my own. My body needed chemo asap and even all my gurus agreed that it was time to fight back with something harder.
This chemo pill is taken everyday and works differently than the IV method just because it's a low dose that attacks it daily. You take it for 2 weeks and break for a week. Side effects so far have been minimal. I feel a bit tired and dazed but other than that, my overall functioning has improved. I can't believe I'm typing this blog because this is the first time I've typed in weeks (although this is a real exercise for my mind right now!) It has only been a week so far and we have noticed a difference in me for sure. I am also doing the oncotherm treatments with the pill which should up the efficacy but it's just a big time commitment to go to Langley 3 times a week on top of everything else. I basically have an appointment a day if I want to keep up with acupuncture and healers so I'm trying not to get over exhausted and canceling when I can.
The best thing is that yesterday, I met with Dr. G again and we finally put a plan together that I feel is right for me and not right for their protocol. Instead of jump starting to radiation this week as planned, I will remain on the chemo pill for another week since I am responding to it. Then next week, I will get a CT scan of my head to see if I will need radiation. After a couple of weeks when the cycle of meds is over, she will get a full body CT to see my progress. When we know what is working or not, we can continue with the weaker chemo or switch to the stronger one. Point is, I am going to be monitored closely and the treatment will change as needed which I am way more comfortable with than being pigeon-holed into something I don't want to do.
So I am doing better now and I will continue to get as much rest as possible and get to the healing! :)
Love, J
Wednesday, November 23, 2011
Quick Update & Fundraising Photos
Thanks for everyone's concern, Jessica has been home since Sunday and have attended doctors' appointments everyday so far this week. With so much happening, it's hard for her to update the blog often so they have opened a new Twitter account. Go to this link and you will see how she is doing on a more regular basis:
http://twitter.com/GetStrongJess
(Elton will be the one doing most of the updates there.)
The photos from Jessica's amazing Surviving Cancer Fundraising Event, that so many of her friends and family (and their friends and family) have so generously supported, are ready for your viewing! They are still so grateful and touched by the love and thoughts from everyone that night! I am so honored to be able to capture that night for her and I hope you will enjoy the photos too.
http://foreverstill.com/jessica/
As my continued support for Jessica and her family, all profits from the sale of these photographs will go to them. Please refer to the website for more info.
Thanks!
Grace
(Jessica's sister)
http://twitter.com/GetStrongJess
(Elton will be the one doing most of the updates there.)
The photos from Jessica's amazing Surviving Cancer Fundraising Event, that so many of her friends and family (and their friends and family) have so generously supported, are ready for your viewing! They are still so grateful and touched by the love and thoughts from everyone that night! I am so honored to be able to capture that night for her and I hope you will enjoy the photos too.
http://foreverstill.com/jessica/
As my continued support for Jessica and her family, all profits from the sale of these photographs will go to them. Please refer to the website for more info.
Thanks!
Grace
(Jessica's sister)
Thursday, November 17, 2011
Jess Out of Surgery - Posted by Elton
Jess went in to surgery yesterday at 11:30am and I saw her just before 7pm. Though I have yet to speak to her amazing brain surgeon, all signs indicate that the procedure was a success! She looked a lot better than the first time i saw her after her last surgery. Nausea and pain were kept at bay this time around...probably a combination of her putting peppermint oil below her nose pre-surgery, anesthesiast reading notes from previous surgery, Jess' qi gong exercises and Jess just being a lot tougher from having 3 major surgeries in 5 months.
This surgery really is a blessing. The tumor that was removed yesterday was there from September but the surgeon (Dr. H) chose not to remove it at that time because of the risks involved. Due to the size of it now, we had no choice and he was surprised she even has any vision based on its location in the brain. He also said that after this surgery, there is a chance that she will lose vision on the left side of both eyes. But the next day after reviewing Jess' latest MRI, Dr. H said it is actually in a different spot and the surgery should go fine with minimal risks. I have limited knowledge in cancer and scans but it was a relief to hear how this MRI scan showed something different than what 2 previous CT scans and an MRI had indicated.
This is when it gets interesting. Later that evening, Jess calls Obi Wan in China and asks if she is feeling better.Jess WAS feeling better but she thought that may have been the medication she is taking from the hospital. Obi Wan continued, saying that he has been doing qi gong heating on her the last couple of days to MOVE her tumor so she should feel better!! Some may call it a coincidence or a lucky guess but Jess and I believe that he played a part in the tumor being in a better spot and was filled with emotions after he said that. This qi gong really amazes me because ten minutes after hanging up with Obi, Jess was having dinner with us and excused herself from the table because she can feel Obi doing heating on her. When she gets heating from him, she just feels so wiped when only half an hour earlier she is fine. I don't know....Jess and I don't question any miracles,coincidences or blessings that we come across...we just carry on with our journey and the faith that someone is always looking over our shoulder.
Thank you everybody for your thoughts and prayers!
Sunday, November 13, 2011
Putting the Fundraiser $ to Good Use
On October 28th, 11 of my closest friends and colleagues decided to pour their hearts together to organize an event to give people an opportunity to support our family in our pursuit of health. Although I was initially reluctant to receive help, this gift could not have been received at a better time. Over 300 people contributed to the fundraising total of over $22000 -many of whom I have never met. That night proved the ripple effect of love and generosity in its highest form. We are forever grateful to all of you and it will be a night i will never forget. We are thankful because this money gives us options and the ability to focus on what's important to get through this. That night gave me a lot of energy with so many familiar faces and warm hugs. It was truly inspiring!
However, over the past 2 weeks, I've been experiencing symptoms that have gradually worsened with some weakening in the left side of my body. Wed night I had a headache, felt nauseous and had shortness of breath. By the end of the week, we knew I needed some help and more information so we went to the ER at RCH to get reassessed. The scans showed that both the brain tumour that was left behind from my previous surgery and the lesions in the lungs have grown. After taking meds to decrease the swelling, I'm feeling a lot better. I will probably have surgery on Wed to remove the brain tumour. The rest of the plan for treatment is up in the air until Monday morning.
As a side note, I went to see Dr. Parmar last week to discuss hyperthermia and put a plan in place to start on Tuesday. The therapies I have been doing are important but with the onset of new neuro symptoms, we needed to bring out the 'big guns'. This chemo pill is different from than the chemo I had in the past because this pill is mild enough to take everyday and can yield positive results with much fewer side effects The chemo pill supplemented with the hyperthermia is the key difference from conventional methods. The technology has been used in Germany for many years and is the standard of care for cancer patients there. I can get this treatment in Fort Langley and put the money raised last month to work. I am involving oncologists while staying the course with my integrative treatments. We know that they have made a difference. This is not my ideal. I've been struggling with the idea of changing my approach, but my game plan has to change.
Things have progressed quickly and there's so many decisions that need to be made. I know that this might come as a shocking news to most of you but the only thing you need to do is to keep me in your prayers. We will try to keep you updated through this blog as much as possible.
However, over the past 2 weeks, I've been experiencing symptoms that have gradually worsened with some weakening in the left side of my body. Wed night I had a headache, felt nauseous and had shortness of breath. By the end of the week, we knew I needed some help and more information so we went to the ER at RCH to get reassessed. The scans showed that both the brain tumour that was left behind from my previous surgery and the lesions in the lungs have grown. After taking meds to decrease the swelling, I'm feeling a lot better. I will probably have surgery on Wed to remove the brain tumour. The rest of the plan for treatment is up in the air until Monday morning.
As a side note, I went to see Dr. Parmar last week to discuss hyperthermia and put a plan in place to start on Tuesday. The therapies I have been doing are important but with the onset of new neuro symptoms, we needed to bring out the 'big guns'. This chemo pill is different from than the chemo I had in the past because this pill is mild enough to take everyday and can yield positive results with much fewer side effects The chemo pill supplemented with the hyperthermia is the key difference from conventional methods. The technology has been used in Germany for many years and is the standard of care for cancer patients there. I can get this treatment in Fort Langley and put the money raised last month to work. I am involving oncologists while staying the course with my integrative treatments. We know that they have made a difference. This is not my ideal. I've been struggling with the idea of changing my approach, but my game plan has to change.
Things have progressed quickly and there's so many decisions that need to be made. I know that this might come as a shocking news to most of you but the only thing you need to do is to keep me in your prayers. We will try to keep you updated through this blog as much as possible.
Tuesday, November 1, 2011
My A-Team
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
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, 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
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