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!
Sunday, January 22, 2012
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!
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