It's been five years. That seems like a milestone, but I don't know if it's really any different. It still hurts. I still think of what she would look like now. I still think about what she would like, not like; do and not do. I still wish she was here. I still wish for her to be a brat to me. I still wish she was playin with her friends. I still wish that her stocking would be opened on Christmas morning.
I've had two Nivolumab infusions since I last wrote. So far, they are going very well. My blood work FINALLY has made some positive changes. My anemia is better (that hasn't changed much in AGES!) and my white count continues to come down (had been up to 43k before my first Nivolumab). My doctor is extremely happy with my physical examinations so far, and I have a CT scheduled for right after Christmas to see how things are going elsewhere. Fingers crossed!
I have actually been feeling quite well. I've gained about 4 pounds (yay 114!), and I'm feeling much stronger. I've been able to get around without pain, and I've actually been able to entertain, play with and even CARRY Lochlan! He has been really loving spending time with me, and I've (for the most part) been loving spending time with him. We baked a batch of cookies yesterday, and he and I have had some great outings and fun times. I'm feeling quite normal most days - a stark change from before. Of course, I still have days that I feel tired and sore. This medication makes me sore for a couple days after the infusions, but also I'm doing more and being more active, which really adds to muscle soreness. And then there are the pangs that come when nodes are shrinking.
I've been able to help more around the house, which has been a huge help for Mike. I'm able to do some things related to CareAline, but I'm still a bit limited on what my brain will keep up with. I still have some chemo fog in there, which is frustrating. I also still have a hard time holding onto things with my hands - it's like there is a delay between when I think I will grab something, and when my hand actually closes around it. I'm hoping that with time and with exercise (and physical therapy) I will regain my muscle control. It's nice to feel more usefull, and to get out of my bed for most of the day!
I'm still resting each day. My body still has a lot of healing to do and a lot of catching up to do from the past year. We are going to be traveling a bit in the near future, and I'm feeling confident that things will go well. Peds2040 is in Miami this year, and I'm super excited to be doing the kids innovation workshop again. We are doing some really fun things with virtual reality, and I'm excited to let the kids play with some fun, new technology! Plus, who could resist Miami in January?!
Another big project I'm jumping into is finally starting in earnest to write my book. I started this book a long time ago, but wasn't completely sure of it's direction and tone. I think I'm ready to go at it full force and give it a go. I won't yet reveal what it is, but I will in time. I may even seek some of you all out to help me and contribute. This project could be exactly what I need. I know it's something that is needed in the world.
This post is a little disjointed, but that's kind of where my brain is. Getting better is fabulous, don't get me wrong, but it has given me the crazy, all over the place, mind that I used to always have. A thousand things in there and a thousand projects going on, and I'm not really quite able to process it all. I've noticed that while I physically am feeling better and able to do more (which makes me want to try and do all the things!), my brain has not caught back up yet. I have to remember to slow down and "divide and conquer" a bit better. One thing at a time! (Button my pants first, then walk down the stairs). Multitasking is not yet back to normal for me. I will be relying a lot on lists and notes and reminders if I'm going to be working on all these things at once. Forgetfulness was not really part of my life before cancer, but it sure is now. One of the downsides to conventional treatment. I can't wait to start some physical therapy (hopefully right after the holidays) and start to build up my strength and flexibility physically, and hopefully then I can focus on also working my brain back to normal. I still have a long road ahead, but I am feeling like I'm finally starting to walk down the road rather than sitting looking at it in front of me - waiting for the signal to go.
Thank you to all who have supported us through this journey so far. We are so greatly appreciative. We are not quite out of the woods yet. There is much to be done to build back me, as well as build back the business since it hasn't been the first priority for the past six or seven months. We have a lot of irons on the fire, but we have to make sure each is ready for forging. Please continue to share my story and my blog - I want to be an encouragement to others as much as I can. And if you can donate, or have friends or family who may be able to donate, we greatly appreciate it. I still pay out of pocket for various parts of my treatment, and our private child care assistance will be ending in January (our state vouchers have not yet come through), and we are still not taking much or a salary for Mike as we build the business back up. Any help is greatly appreciated. Thank you!!!
Sunday, December 18, 2016
Sunday, November 20, 2016
Pain, Air beds and Buddism
On Thursday I had my first Nivolumab infusion. Turns out that they don't normally premed with this drug for their patients with other cancers. With an afternoon appointment, we hit traffic going in, so we were running late, and I got a late start. It's a one hour infusion, and I have it through a peripheral IV (as I feel like right now I don't need a bigger line for a short infusion with no pain). The infusion went smoothly, and seemed to be worry free.
We got out of the hospital at about 4:45, just in time to hit rush hour traffic on the one highway that leaves Gloucester to go toward home. We got stuck in traffic, and then it hit. Excruciating pelvis and hip and lower back pain that had me screaming, cursing and writhing in pain. It took a little over an hour to get home (should take about 25 mins). I went up to bed and took two pills - an Alieve and an Ativan. I was starting to get nauseous, and I was starting to panic about the pain. I tried a bunch of positions, a heating pad, and relaxation techniques. The pain wouldn't stop, it was getting worse. I was having a full blown panic attack at this point. I started shaking uncontrollably and I was hyperventilating. I told Mike to call 911 - I needed help with the pain, and oxygen immediately.
The paramedics put me on O2 asap as my fingers and lips were already blue. My pulse ox was in the low 80s. As soon as the oxygen flowed the shaking started to calm down. By the time we got to the hospital the shaking was done, but the pain was still a 10, which for me is insane - remember I did a c-section and only took ibuprofen (and less than they said) after, and did an unmedicated 23 hours of labor VBAC with no trouble. There have been two times I have asked for strong pain meds - my second set of kidney stones (it was 6mm, the 4mm one I passed with only taking Alieve), and bone pain from Nupogen injections with my first rounds of chemo in 2011. They put me in a room asap, and I asked the nurse for oxygen so that I could keep the panic attack at bay. She was happy to do so. I continued to cry and ask for help while waiting for the doctor. I felt horrible for the nurse, as she couldn't do anything without a doctor's order, and the ER was extremely busy. She put me as high on the list as she could (there had been people waiting for over 3 hours to be seen already) and I waited about an hour and a half for my meds. The nurse practically ran into the room with the IV morphine when she got the OK. Thank goodness for IV meds and how fast they work - while she was still pushing the dose I felt things start to relax and release. The doctor was trying to ask me questions and I had to take a second to get my head back. From 10 I went to a 3 or 4 very quickly and I finally laid back and could just be in one position. The pain started creeping back up to a 5/6 over the next hour or so, so we decided I would stay for observation overnight, take a Percocet to see if that would be enough to control it now that we were getting ahead of the pain, and they ordered a few extra tests. I apologized to all the nurses and the doctors for being so upset when I got in. They have a hard job, and I always hate to be a bad patient.
Because I just needed to be observed and pain meds if the pain came back, they put me on the observation floor. I got up there just before midnight (after dozing a few times in the ER - thank you narcotics!), and the nurse was amazing. So sweet. Here is the greatest part - I was in a bed that had an alternating pressure air pump! The nurse said that some people don't like it because of the sound it makes (I'm used to sleeping with noise, so no biggie for me), but I found it to be the most amazing experience ever! For the first time in I don't know how long I slept for hours without needing to move and without having any pain. I even woke up pain free! I figured that it was thousands of dollars to get a mattress like that, but turns out I can get a topper with the pump for $100-300 from Walmart of all places. Going to be getting one asap - sleep is my restorative time.
When I got home, I found a great gift from a friend - a book that I had pinned on Pinterest called "How to be Sick" by Toni Bernhard. I have already finished it. It's a look at how buddhism and it's teachings can help chronically ill people and their caregivers live less stressfully with the changes in their life. It's an amazing book and I highly recommend it to anyone who is going through an illness, taking care of someone with an illness, or the family and friends of someone with an illness. I have already implemented one or two of the things, and I'm looking forward to expanding my practice. I can't remember the last time I read a whole book, and I don't think I've EVER finished a book in a few days (thank's dyslexia). It is truly amazing that this woman - who has way more daily struggles than I do - was able to share her story and her Buddhist coping mechanisms to help all those who read her book get through with grace and peace. I will have to send her a thank you.
I'm already feeling that this drug is having positive effects (even with all the pain it caused). I already have noticed I'm able to eat more in a sitting (showing signs that my spleen is shrinking), and I can feel twinges of things happening in my neck and armpit, and the swelling is down there as well. Even the swelling in my hip and lower abdomen is less already. I'm not counting on a miracle yet, but at least things seem to be moving in the right direction, and that (thankful to my latest read) is something to be joyful about.
We got out of the hospital at about 4:45, just in time to hit rush hour traffic on the one highway that leaves Gloucester to go toward home. We got stuck in traffic, and then it hit. Excruciating pelvis and hip and lower back pain that had me screaming, cursing and writhing in pain. It took a little over an hour to get home (should take about 25 mins). I went up to bed and took two pills - an Alieve and an Ativan. I was starting to get nauseous, and I was starting to panic about the pain. I tried a bunch of positions, a heating pad, and relaxation techniques. The pain wouldn't stop, it was getting worse. I was having a full blown panic attack at this point. I started shaking uncontrollably and I was hyperventilating. I told Mike to call 911 - I needed help with the pain, and oxygen immediately.
The paramedics put me on O2 asap as my fingers and lips were already blue. My pulse ox was in the low 80s. As soon as the oxygen flowed the shaking started to calm down. By the time we got to the hospital the shaking was done, but the pain was still a 10, which for me is insane - remember I did a c-section and only took ibuprofen (and less than they said) after, and did an unmedicated 23 hours of labor VBAC with no trouble. There have been two times I have asked for strong pain meds - my second set of kidney stones (it was 6mm, the 4mm one I passed with only taking Alieve), and bone pain from Nupogen injections with my first rounds of chemo in 2011. They put me in a room asap, and I asked the nurse for oxygen so that I could keep the panic attack at bay. She was happy to do so. I continued to cry and ask for help while waiting for the doctor. I felt horrible for the nurse, as she couldn't do anything without a doctor's order, and the ER was extremely busy. She put me as high on the list as she could (there had been people waiting for over 3 hours to be seen already) and I waited about an hour and a half for my meds. The nurse practically ran into the room with the IV morphine when she got the OK. Thank goodness for IV meds and how fast they work - while she was still pushing the dose I felt things start to relax and release. The doctor was trying to ask me questions and I had to take a second to get my head back. From 10 I went to a 3 or 4 very quickly and I finally laid back and could just be in one position. The pain started creeping back up to a 5/6 over the next hour or so, so we decided I would stay for observation overnight, take a Percocet to see if that would be enough to control it now that we were getting ahead of the pain, and they ordered a few extra tests. I apologized to all the nurses and the doctors for being so upset when I got in. They have a hard job, and I always hate to be a bad patient.
Because I just needed to be observed and pain meds if the pain came back, they put me on the observation floor. I got up there just before midnight (after dozing a few times in the ER - thank you narcotics!), and the nurse was amazing. So sweet. Here is the greatest part - I was in a bed that had an alternating pressure air pump! The nurse said that some people don't like it because of the sound it makes (I'm used to sleeping with noise, so no biggie for me), but I found it to be the most amazing experience ever! For the first time in I don't know how long I slept for hours without needing to move and without having any pain. I even woke up pain free! I figured that it was thousands of dollars to get a mattress like that, but turns out I can get a topper with the pump for $100-300 from Walmart of all places. Going to be getting one asap - sleep is my restorative time.
When I got home, I found a great gift from a friend - a book that I had pinned on Pinterest called "How to be Sick" by Toni Bernhard. I have already finished it. It's a look at how buddhism and it's teachings can help chronically ill people and their caregivers live less stressfully with the changes in their life. It's an amazing book and I highly recommend it to anyone who is going through an illness, taking care of someone with an illness, or the family and friends of someone with an illness. I have already implemented one or two of the things, and I'm looking forward to expanding my practice. I can't remember the last time I read a whole book, and I don't think I've EVER finished a book in a few days (thank's dyslexia). It is truly amazing that this woman - who has way more daily struggles than I do - was able to share her story and her Buddhist coping mechanisms to help all those who read her book get through with grace and peace. I will have to send her a thank you.
I'm already feeling that this drug is having positive effects (even with all the pain it caused). I already have noticed I'm able to eat more in a sitting (showing signs that my spleen is shrinking), and I can feel twinges of things happening in my neck and armpit, and the swelling is down there as well. Even the swelling in my hip and lower abdomen is less already. I'm not counting on a miracle yet, but at least things seem to be moving in the right direction, and that (thankful to my latest read) is something to be joyful about.
Wednesday, November 16, 2016
Long Overdue...
It's been a long time since I posted. I've kind of been in a depressed funk. With the weather getting colder, and not being as comfortable for outside sitting, I've spent a lot of time in my room binge watching Netflix and project runway. Not exactly my highest point.
The update is that as of October, the Brentuximab was no longer shrinking my cancer. It had done a great job getting rid of a bulk of my disease, but the places it didn't touch have started to get angry again. I have a couple of small new spots on both my lungs and my liver and the mass in my abdomen and nodes in my hip have started to get a little bigger. This threw me for a loop as I was hoping that I would be done after 6 rounds, but it seems like I'm back in the hot seat of deciding on new treatment .... Again!
It's overwhelming to have to do this over and over again. I went to Dana Farber and met again (a year and a half later) with dr Armand. This meeting didn't go as well as I hoped, but not because of the things he was telling me, but rather his tone and some choice words he used. While I was frustrated with the way the appointment went, I did get most of the information I needed to make a decision on my next step in treatment. SO here goes...
My next drug of choice is Nivolumab - a PD-1 checkpoint inhibitor that in the spring was still on trials, but is now FDA approved and available for hodgkin's patients. This drug has shown great promise in getting people into remission - and many have had durable remissions. It has not been used in hodgkin's long enough to have official "cure" data, but it is a great next step for me.
This drug also will not (likely) effect my chances at having a successful stem cell transplant in the future should I need one. As it is not a chemotherapy, it doesn't create the chemo resistance that can happen when you try chemo after chemo after chemo and keep changing those types of drugs (this is why I chose this over combining Brentuximab with Brendamustine - which is another good combo, but would be a treatment that could potentially reduce my likelyhood of getting cure from an auto transplant).
A few things that come in the future - as far as this drug goes, I'm hoping to get a complete response (CR). I am willing to stay on it for some number of doses if that response is reached. As maintinence therapy I plan on doing a few things - making sure my diet is more low carb, Tong Ren therapy with accupuncture, much more regular chiropractic care (someone remind me I need to make an appointment!), Cannabis oil in low doses, regular detox, yoga, rebounding, and mindfulness work (massage, meditation, etc). The biggest factor that will (my doctors and I believe) help to keep me in remission is that I have taken future pregnancies off the table. My original diagnosis and my relapse were both linked to my pregnancies, and there is some science that says it could be linked. Taking that off the table will hopefully keep me trigger free for relapse in the future. (Pregnancy is linked to hodgkin's with the PD-1 checkpoint - a hormone (I think it's a hormone) that is also excreted by the unborn fetus to keep safe from the mother's immune system.)
While I know that cancer is a metabolic disease, and not a true immune disorder, the immune system plays a vital role in helping the body clear widespread disease. This is my hope for Nivolumab for me - to clear my of my widespread disease, while I work to restore my metabolism. (If anyone wants to come over and put my rebounding trampoline together, I wouldn't object 😀.
Timeline: Because of the holidays, and trying to avoid the chaotic schedule that will happen at the hospital next week, I am starting Nivolumab TOMORROW (Thursday) afternoon. Since my last dose of anything was in the middle of October, I'm feeling good about getting going on the next step. My oncologist and my clinic nurses are very familiar with this drug, as it has been approved for other cancers for years, and have had hundreds of patients on this before, so it will be an easier first day (at least for them) than my first day of Brent. I'm glad I get to see my nurses tomorrow and I'm keeping my fingers crossed for minimal side effects and fast acting cancer killing!
Big question: how am I feeling? I feel pretty good - for sure better than I felt in July when I started the Brent. The only thing that is really bothering me is my hip and lower back. There is a node in my hip that pushes against an old hip flexor injury that is all scar tissue, so any little irritation causes pain. I am managing with just Tylenol and the occasional alieve, which is good. I hate taking pain meds, but right now I need to be able to at least sleep and function semi normally during the day.
With this new drug, we are not sure what my needs will be. We should know more over the next few days. If anyone wants to bring meals, I can reopen the meal train dates. That is always a huge help for us. If anyone wants to start taking L on Thursday mornings for us, that would be helpful as well. Lastly, for those who have supported us already, thank you so much. We greatly appreciate it. If you are able to donate, or know someone who may be able to donate, please share and click the button in the upper right of this blog. Unfortunately we are still not out of the woods financially (although we have had some amazing help from some amazing donors and organizations - THANK YOU!), and every dollar helps.
Best to all those in this fight with me - I know it has been a long and hard road. Hopefully it can be less chaotic soon.
The update is that as of October, the Brentuximab was no longer shrinking my cancer. It had done a great job getting rid of a bulk of my disease, but the places it didn't touch have started to get angry again. I have a couple of small new spots on both my lungs and my liver and the mass in my abdomen and nodes in my hip have started to get a little bigger. This threw me for a loop as I was hoping that I would be done after 6 rounds, but it seems like I'm back in the hot seat of deciding on new treatment .... Again!
It's overwhelming to have to do this over and over again. I went to Dana Farber and met again (a year and a half later) with dr Armand. This meeting didn't go as well as I hoped, but not because of the things he was telling me, but rather his tone and some choice words he used. While I was frustrated with the way the appointment went, I did get most of the information I needed to make a decision on my next step in treatment. SO here goes...
My next drug of choice is Nivolumab - a PD-1 checkpoint inhibitor that in the spring was still on trials, but is now FDA approved and available for hodgkin's patients. This drug has shown great promise in getting people into remission - and many have had durable remissions. It has not been used in hodgkin's long enough to have official "cure" data, but it is a great next step for me.
This drug also will not (likely) effect my chances at having a successful stem cell transplant in the future should I need one. As it is not a chemotherapy, it doesn't create the chemo resistance that can happen when you try chemo after chemo after chemo and keep changing those types of drugs (this is why I chose this over combining Brentuximab with Brendamustine - which is another good combo, but would be a treatment that could potentially reduce my likelyhood of getting cure from an auto transplant).
A few things that come in the future - as far as this drug goes, I'm hoping to get a complete response (CR). I am willing to stay on it for some number of doses if that response is reached. As maintinence therapy I plan on doing a few things - making sure my diet is more low carb, Tong Ren therapy with accupuncture, much more regular chiropractic care (someone remind me I need to make an appointment!), Cannabis oil in low doses, regular detox, yoga, rebounding, and mindfulness work (massage, meditation, etc). The biggest factor that will (my doctors and I believe) help to keep me in remission is that I have taken future pregnancies off the table. My original diagnosis and my relapse were both linked to my pregnancies, and there is some science that says it could be linked. Taking that off the table will hopefully keep me trigger free for relapse in the future. (Pregnancy is linked to hodgkin's with the PD-1 checkpoint - a hormone (I think it's a hormone) that is also excreted by the unborn fetus to keep safe from the mother's immune system.)
While I know that cancer is a metabolic disease, and not a true immune disorder, the immune system plays a vital role in helping the body clear widespread disease. This is my hope for Nivolumab for me - to clear my of my widespread disease, while I work to restore my metabolism. (If anyone wants to come over and put my rebounding trampoline together, I wouldn't object 😀.
Timeline: Because of the holidays, and trying to avoid the chaotic schedule that will happen at the hospital next week, I am starting Nivolumab TOMORROW (Thursday) afternoon. Since my last dose of anything was in the middle of October, I'm feeling good about getting going on the next step. My oncologist and my clinic nurses are very familiar with this drug, as it has been approved for other cancers for years, and have had hundreds of patients on this before, so it will be an easier first day (at least for them) than my first day of Brent. I'm glad I get to see my nurses tomorrow and I'm keeping my fingers crossed for minimal side effects and fast acting cancer killing!
Big question: how am I feeling? I feel pretty good - for sure better than I felt in July when I started the Brent. The only thing that is really bothering me is my hip and lower back. There is a node in my hip that pushes against an old hip flexor injury that is all scar tissue, so any little irritation causes pain. I am managing with just Tylenol and the occasional alieve, which is good. I hate taking pain meds, but right now I need to be able to at least sleep and function semi normally during the day.
With this new drug, we are not sure what my needs will be. We should know more over the next few days. If anyone wants to bring meals, I can reopen the meal train dates. That is always a huge help for us. If anyone wants to start taking L on Thursday mornings for us, that would be helpful as well. Lastly, for those who have supported us already, thank you so much. We greatly appreciate it. If you are able to donate, or know someone who may be able to donate, please share and click the button in the upper right of this blog. Unfortunately we are still not out of the woods financially (although we have had some amazing help from some amazing donors and organizations - THANK YOU!), and every dollar helps.
Best to all those in this fight with me - I know it has been a long and hard road. Hopefully it can be less chaotic soon.
Sunday, September 4, 2016
Feeling Gipped....
For the past few days/weeks, I have been really feeling like cancer has stolen my life. I had my scan on the 29th, and my dr. appointment on the 30th to go over the results. I was feeling pretty confident - based on what I was feeling in my body, and the things that I could feel from the outside. Sadly, my oncologist was not quite as happy about the scan results. While I have made some great progress physically, and in most of my body, there were just a couple places that were worse than my scan in June before I started treatment. However, I know that those places have gotten smaller in the past few weeks, so in my mind, it wasn't really as bad. Still, it's hard to go in and think that you are going to get a happy face from your doctor, and then she's all Debbie Downer about everything - even though there were some major positives (which she pointed out later and agreed with me). It's sometimes hard to have hope when no one else around you seems to share in that.
With the end of the summer hitting us right in the face, I've really noticed how much I have missed this year. Not once have I gotten in the ocean, not once did I get to make a sand castle with Lochlan or bury him in the sand, not once did I get to sit in the backyard with a fire and roast marshmallows, and not once did I go camping. I have spent so much time sitting, or in bed, or feeling gross, or in pain and I'm just hating that I'm missing out on so much. I love summer and doing things that are outdoors, and relaxing and calm, and I missed all that this year. I also feel like this summer Lochlan really came into his own being a "big kid," and I missed so many opportunities to help him grow and learn and have fun. I didn't get to play at the playground or take him to the zoo. We didn't get to go canoeing or hiking or splash in a waterfall. There are so many places I want to explore with him, and I just feel like that has been stolen from me.
This summer has also been really hard because I have started to come to the realization that having more children is not going to be possible for me. My cancer has been exacerbated by both of my pregnancies, and - after the battle I'm forging now - I have to do everything to avoid another relapse. It breaks my heart that Lochlan is going to grow up without a living sibling. And even more, it hurts that he has had to play mostly by himself this summer because of it. Saoirse's absence is being felt majorly as I watch him sit in a kiddie pool full of dirt digging by himself rather than chasing his big sister around the yard. His face seems so sad, and I wonder if he feels like he is missing out, even though he doesn't really know any better.
Parenting Lochlan has been a real struggle for me since he was born. I haven't been able to connect with him in the way I feel like I connected with Saoirse. I feel like I'm " blaming" him for my cancer, and at the same time distancing myself so that if something happens, the heart break won't be so bad. It's crazy - and unfair - and I HATE myself for it. I spent my whole life growing up just WAITING to be a mom - it was my career goal, and my life goal. And now that I have gotten my wish, it is trying to kill me - literally. It is such a surreal feeling for me to want to send him off all the time, and spend my time doing "nothing" or doing something that doesn't involve parenting. I wish that I could separate his existence from my cancer in my mind, but so far, I just haven't been able to force myself to do it.
Round 4 is in the books. I was hoping that by this time I would be in remission and that we would be doing a couple rounds to just make sure it was all gone. It's not the case, and I'm stuck in a holding pattern still until we see more results. Luckily, many of the major physical issues I had for the first two and a half cycles have subsided, and I am feeling like I can be more like myself and am more able to do some normal things. I am hoping that things keep reducing, and I keep feeling well, and I can start to do some of my normal activities. I need to feel like a person again - not just a patient - and I hope that maybe I can draw myself back to life.
With the end of the summer hitting us right in the face, I've really noticed how much I have missed this year. Not once have I gotten in the ocean, not once did I get to make a sand castle with Lochlan or bury him in the sand, not once did I get to sit in the backyard with a fire and roast marshmallows, and not once did I go camping. I have spent so much time sitting, or in bed, or feeling gross, or in pain and I'm just hating that I'm missing out on so much. I love summer and doing things that are outdoors, and relaxing and calm, and I missed all that this year. I also feel like this summer Lochlan really came into his own being a "big kid," and I missed so many opportunities to help him grow and learn and have fun. I didn't get to play at the playground or take him to the zoo. We didn't get to go canoeing or hiking or splash in a waterfall. There are so many places I want to explore with him, and I just feel like that has been stolen from me.
This summer has also been really hard because I have started to come to the realization that having more children is not going to be possible for me. My cancer has been exacerbated by both of my pregnancies, and - after the battle I'm forging now - I have to do everything to avoid another relapse. It breaks my heart that Lochlan is going to grow up without a living sibling. And even more, it hurts that he has had to play mostly by himself this summer because of it. Saoirse's absence is being felt majorly as I watch him sit in a kiddie pool full of dirt digging by himself rather than chasing his big sister around the yard. His face seems so sad, and I wonder if he feels like he is missing out, even though he doesn't really know any better.
Parenting Lochlan has been a real struggle for me since he was born. I haven't been able to connect with him in the way I feel like I connected with Saoirse. I feel like I'm " blaming" him for my cancer, and at the same time distancing myself so that if something happens, the heart break won't be so bad. It's crazy - and unfair - and I HATE myself for it. I spent my whole life growing up just WAITING to be a mom - it was my career goal, and my life goal. And now that I have gotten my wish, it is trying to kill me - literally. It is such a surreal feeling for me to want to send him off all the time, and spend my time doing "nothing" or doing something that doesn't involve parenting. I wish that I could separate his existence from my cancer in my mind, but so far, I just haven't been able to force myself to do it.
Round 4 is in the books. I was hoping that by this time I would be in remission and that we would be doing a couple rounds to just make sure it was all gone. It's not the case, and I'm stuck in a holding pattern still until we see more results. Luckily, many of the major physical issues I had for the first two and a half cycles have subsided, and I am feeling like I can be more like myself and am more able to do some normal things. I am hoping that things keep reducing, and I keep feeling well, and I can start to do some of my normal activities. I need to feel like a person again - not just a patient - and I hope that maybe I can draw myself back to life.
One Step at a Time
The second round of Brent took a major toll on me physically. The second dose is notorious for being the worst, so I had sort of mentally prepared, but it was a hard thing to deal with. The joint and muscle pain, the neuropathy in my feet first thing in the morning, the extreme exhaustion just trying to get around with all that. It was super hard for me to have to be back to relying on others for almost everything again. There were definitely times that moving wasn't so bad (and the symptoms seemed to ware off by my next dose), but as soon as I felt a little better, I was so tired I had to sit again and the whole "stiff joints and hard to move" cycle started again.
Eating has also gone back to being more difficult. We haven't been getting as many prepared meals delivered, so more cooking has been required. I haven't had the voracious appetite I had, and foods are harder to pick out (sucky part about chemo!). Having hunger but not wanting anything we have in the house has been a big challenge, and there are days when this is so amazingly frustrating I eat almost nothing (or just salad and fruit which is not exactly calorie dense). Because I haven't had any real nausea, I haven't been forcing myself to eat constantly and that is showing. My weight is "stable," but I need to gain a few pounds (or like 15) and eating will help with my energy so I have enough to exercise and build my muscles back up.
My third round was "delayed" by three days (well, the weekend) because I had an event that I desperately wanted to attend on my normally scheduled chemo day. Luckily, my doctor was totally ok with this change, so I was able to attend! I went to Jacobs Pillow in the Berkshires to attend a talk and book signing by a photographer who's work I have been following since I was probably in middle school - Lois Greenfield! Mike and I went out for the night - we drove and stayed in a Super 8 hotel a few miles away (I would love to stay out there for a month! It's so peaceful and beautiful and relaxing. Such a change from here). When we arrived, I was a bit sore and stiff from the drive, so we rested (with my swollen feet up) for an hour and then I BEGGED to go early so we could get good seats. We got to sit FRONT ROW and spoke to some awesome people while we waited (an hour!) for the event to start. I brought my marked up copy of Lois' second book (couldn't find a copy of the first book- I either didn't have one, or lost it), and bought a copy of her new book while I was there. Her talk was so amazing - and I even got to ask her a question at the end that led to a great topic discussion.
She signed books after the talk, and I got her to sign my marked up book and my new book. I also got to show her a print of my work (which I gave to her to keep) and she told me to keep in touch! I was so excited and I can't wait to reconnect with her in the future. What an amazing way to spend a day that I was supposed to be stuck inside with an IV in my arm!
Round three went off without a hitch, and over time my stiffness and pain started to subside. Moving started to get a bit easier, and I started to feel a bit more normal. I scheduled my scan for the 29th of august, so scanziety was setting in, but I was confident in how I was feeling so I didn't think too much of it. Hopefully all will go well. Keep your fingers crossed!!!
Eating has also gone back to being more difficult. We haven't been getting as many prepared meals delivered, so more cooking has been required. I haven't had the voracious appetite I had, and foods are harder to pick out (sucky part about chemo!). Having hunger but not wanting anything we have in the house has been a big challenge, and there are days when this is so amazingly frustrating I eat almost nothing (or just salad and fruit which is not exactly calorie dense). Because I haven't had any real nausea, I haven't been forcing myself to eat constantly and that is showing. My weight is "stable," but I need to gain a few pounds (or like 15) and eating will help with my energy so I have enough to exercise and build my muscles back up.
My third round was "delayed" by three days (well, the weekend) because I had an event that I desperately wanted to attend on my normally scheduled chemo day. Luckily, my doctor was totally ok with this change, so I was able to attend! I went to Jacobs Pillow in the Berkshires to attend a talk and book signing by a photographer who's work I have been following since I was probably in middle school - Lois Greenfield! Mike and I went out for the night - we drove and stayed in a Super 8 hotel a few miles away (I would love to stay out there for a month! It's so peaceful and beautiful and relaxing. Such a change from here). When we arrived, I was a bit sore and stiff from the drive, so we rested (with my swollen feet up) for an hour and then I BEGGED to go early so we could get good seats. We got to sit FRONT ROW and spoke to some awesome people while we waited (an hour!) for the event to start. I brought my marked up copy of Lois' second book (couldn't find a copy of the first book- I either didn't have one, or lost it), and bought a copy of her new book while I was there. Her talk was so amazing - and I even got to ask her a question at the end that led to a great topic discussion.
She signed books after the talk, and I got her to sign my marked up book and my new book. I also got to show her a print of my work (which I gave to her to keep) and she told me to keep in touch! I was so excited and I can't wait to reconnect with her in the future. What an amazing way to spend a day that I was supposed to be stuck inside with an IV in my arm!
Round three went off without a hitch, and over time my stiffness and pain started to subside. Moving started to get a bit easier, and I started to feel a bit more normal. I scheduled my scan for the 29th of august, so scanziety was setting in, but I was confident in how I was feeling so I didn't think too much of it. Hopefully all will go well. Keep your fingers crossed!!!
Monday, July 25, 2016
…..and Dirty Socks
Things were going pretty well after my first dose of chemo. After my first panic attack ER trip, I did end up in the ER again with a possible blood clot in my leg. I had called the VNA nurse on a saturday morning, and after listening to my symptoms, she (regretfully) sent me into the ER. Of course, being a Saturday, they were packed - one woman who fell, one guy who had gone over the handlebars of his bike, an older woman who didn't really know why she was there at all. For the fact that I came in with a possible clot, it took them forever to get my ultrasound done. The tech was great - we had a nice chat and she quickly reassured me that she wasn't seeing any clots. She did, however, suggest that I mention cellulitis to the doctor and see if they thought it could be that. With the confirmation of no clot, the doctor looked at my leg again and decided that I did indeed have edema induced cellulitis, and put me on a 10 day run of Keflex antibiotics. It definitely cleared it up, and I was back to "normal" in a couple days.
After that, I had a good run. Things seemed to be going well - tumors shrinking, infection going away - and I was looking forward to spending two days with my parents in the Berkshires. Just a few days before leaving, my body decided to start in with the joint pain side effect of this drug. Excruciating, arthritis-like pain in every single joint. Getting out of bed has been hardest. Once I move around a bit they ease some, but stairs are rough, and I don't have enough energy to constantly be up and moving, so there are always times when I'm back to being stiff and in pain. We did make it to the Berkshires, and we had fun, even if I had to be in a wheelchair or use a walker and a cane the whole time. I think my favorite part was the puppet show of "the three little pigs" that was so amazing that it entertained both the kids AND the adults completely for a full half hour! They seriously need to advertise more to adults as it was just as fun for us as it was for all the 2-8 year olds that were there to watch.
For a few days I was off of any pills and meds (with the exception of my nightly cannabis oil. Did I ever tell you what it tastes like? Dirty socks - yup, not so appetizing. But not so bad if you just swallow it and keep it off your tongue). It was a nice feeling. And, it turns out, I'll be this way for a while. I love that I don't have a thousand pills to take to manage the side effects from this drug. Makes it "easier" to handle for me mentally.
On the way home from the Berkshires, I broke out with a rash on my knees. The nurse practitioner (Jessica - super nice!) looked and agreed with me that she didn't think it was another case of cellulitis, but rather heat rash or some other rash from being exposed to something my skin didn't like. It started on just my knees, but did spread out and cover most of my legs and arms and cheeks over the next few days. They looked at it when I went in for chemo on Friday, and everyone talked and we all decided that it was most likely a reaction to sun exposure (or sunscreen/sun exposure), which I'm supposed to avoid while on this drug. I thought I had done a good job covering up with sunscreen and pants, but it wasn't enough. At least it didn't keep me from getting my chemo, though. I was a bit worried about that when I went into clinic on Friday.
This weekend has proven to be quite the smack down for us here in the Fitzgerald house. Friday, my chemo went well, and I was out of there in under 2 hours. The steroid made me a little nuts, as usual, but I was able to get a little rest and had a great chat with my Aunt Susan. Later that night, Mike had his own emergency. He was stung by some ground wasps while mowing the side lawn, and ended up having a major allergic reaction. He was taken by ambulance to the ER that night, and was sent home on prednizone, benadryl and with an epipen prescription. I went to my neighbor's house and we got to chat and catch up. It was like a little girls night in for us, while she was "babysitting" me and making sure I didn't have any reactions. We picked up mike at about 11:30, and we headed to bed. The next morning Mike got into doing some other things and forgot to take his meds. A panic of feeling the same symptoms start up again (even though no hives were breaking out this time) while we were at CVS picking up his prescriptions sent him back (by ambulance) to the ER. This time they just watched him as he had by then taken his steroid and benadryl, but they were glad he went in. He is now required to carry an epipen with him always as the reactions will be worse and worse each time he gets stung.
With all this going on, Saturday was Lochlan's 3rd birthday! I can't believe he's three. It seems like the time is just flying by, and that I'm missing out on some of the good stuff. He is turning into a little boy, no longer a baby or a toddler, and its making me miss Saoirse even more. We didn't get to see her grow up to be a little girl, and I think in my head I'm just not ready for him to surpass her in that way. Mike and I made a cake (a train cake to be specific) for Lochlan's birthday. He loved it, and after dinner with family, running out of a wind storm in the yard and all sorts of excitement, cake and presents, I was completely exhausted and had to go to bed. Of course, I spiked a fever and had to call in, but with all that happened over the weekend (and the fact that I was having no other symptoms of infection), my doctor was fine with me taking some tylenol and sleeping it off. I was fine the next morning (except for being tired and having joint pain still), and tried to get more rest.
It's hard to rest when all you want to do is be normal. I think this has been the hardest part for me. I want to be more useful and helpful, but I just can't. I think maybe that's why some people think we are doing so well over here. I'm looking better, and mentally am feeling better, but the reality is that physically my body just can't cope. I still have to rest a lot, and still have pain that is interrupting my being "normal" and "functional." It's hard to allow people to do everything for you all the time, and it gets harder to keep asking for help. I feel like I should be progressing faster, and even though I've been told that I'm making good progress and that things will take time, I just wish that I could be more like myself and less like a cancer patient. But I guess that - for now at least - I'm going to have to get used to being a cancer patient again. You would think that I would be used to it by now, but its a hard thing to let yourself be.
Again, thank you to all of you who have reached out to us with help and support. It means so much to us. If you have some time to come hang out with me, or come play with Lochlan, we always need the help. Thank you!
Sunday, July 10, 2016
Bitter Pills
Things were very tough when I got home from the hospital I was carrying over 15 pounds of water weight (*we now know it was more than 30 pounds!), and it was extremely difficult to move or sit or lay down. I was so uncomfortable - and therefor super cranky and emotional. I couldn't do anything for myself. I needed help to just get up out of a chair, to lift my leg onto the footrest, even just to wipe a stepped-on-rock off my feet! Relying on others to do everything for me was extremely difficult for this "strong willed" independent 31 year old.
A panic attack over my water retention and ascites sent me to the ER on Sunday (after coming home on Friday) in a panic that I should have been given an albumin infusion while in the hospital. PTSD was rampant in my brain of Saoirse never coming home after her last admission. You see, I was living exactly her last hospital stay - third spacing fluid, so uncomfortable and full it kept her from functioning; squished liver; trouble breathing with fluid in the lungs - She was sent to the ICU and she never came out. I didn't want that to happen to me, and in my head, that's where I was headed. The reality for me, however, was much much different. The ER drew labs and the doctor put a call in to my oncologist to discuss things. Turns out my labs were so much better than just the two days before, that nothing was needed to be done, and I was reassured that my body was actually moving in the right direction to healing itself. This reassurance allowed me to relax a bit and helped me be more "comfortable" being home.
Over the next few days the fluid slowly started to recede just enough that I could eat a little bit more food at the time. On Thursday, June 30 I went in for my first dose of Brentuximab. It was a strange to be back in the same place again. My usual nurse was ready and waiting for me. It was a busy day at the Addison infusion center, and almost every chair was filled. The drug itself is only a half hour infusion, but on the first day there is always a lot to do to prep for a new medicine - and this was a new medicine for the clinic as well. I was there for about 3 hours total. Not so bad, considering my first ABVD treatment I was there for 8 hours! The only pre-med for this infusion is Dexamethazone - a steroid to help curb infusion reactions. The nurse warned me that the pills were very bitter, and they definitely were. I appreciated the warning (and the crackers to get rid of the taste!). Once she got my IV in and connected, she hooked up the Brent. It goes in pretty easily - not at all painful like some of the drugs from before (yay for not needing to get a port put in). She watched me afterwards and gave me some fluids just to make sure I didn't have an immediate reaction that would need attention. I sat with my coloring, and felt pretty normal and comfortable. Then it was time to go home.
After getting home, and getting settled, I was feeling pretty great. I decided to watch the movie version of Rent, and was belting out show tunes for two hours (thanks to the help of Mr. Steroid that I had taken). The highest risk of reactions from Brent is the 24 hours after infusion, so Mike was obsessively taking my temperature in order to make sure I didn't spike a fever. This led to a hilarious incidence of my temperature actually DROPPING and causing me to have to make a call into the on-call doctor at the clinic. I dropped below 95 degrees (according to one thermometer), but I felt fine otherwise. The on-call doctor said it wasn't a concern, so I was able to go to sleep and not have to keep checking. Of course it was normal the next day (and every day after that) no problem, but it was a rather funny reason for having to be on "fever watch."
Each day after chemo my swelling seemed to be going down. By fourth of July I was feeling comfortable enough that I could sit up and go to a family cook out. I still needed help to get around and in and out of the car and things like that, but I was feeling like it wasn't as painful as it had been. It was nice to get out of the house and see other people! I lasted about 3 hours and two plates of food in the heat, and then we headed home. It was a relaxing day. The next three nights I was up every couple of hours peeing out tons of fluid. Each day there was a significant difference in the swelling and my comfort. I was able to sit up for more of the day each day, and was able to finally have my legs back to normal by Wednesday when I had to go to my doctor's appointment. And, oh yah, the tumor on my back was visibly shrinking! It actually hurts when it shrinks, but the pain is totally worth it in the end. She was very happy with my progress, but was concerned about my high heart rate. An EKG showed nothing to worry about immediately, but she was glad that VNA was coming out the next day to check on things again. (More on this in another post.) Down to 106 pounds though, but with the fluid gone, my appetite was coming back full force and I have been eating non-stop ever since.
So far this drug has been a blessing. It has caused some additional things to worry about and think about, but it is acting as it should in my body, and has helped immensely already. Keep your fingers crossed that it will continue to work just as well in future doses, and that I can be done with this all by the end of the summer! Here's hoping!
As always, thank you again for all of your support, and if you want to help, or know someone who wants to help out, please take a look at our Needs page and contact me if you have any questions or just want to chat. It's quite boring here after all.
A panic attack over my water retention and ascites sent me to the ER on Sunday (after coming home on Friday) in a panic that I should have been given an albumin infusion while in the hospital. PTSD was rampant in my brain of Saoirse never coming home after her last admission. You see, I was living exactly her last hospital stay - third spacing fluid, so uncomfortable and full it kept her from functioning; squished liver; trouble breathing with fluid in the lungs - She was sent to the ICU and she never came out. I didn't want that to happen to me, and in my head, that's where I was headed. The reality for me, however, was much much different. The ER drew labs and the doctor put a call in to my oncologist to discuss things. Turns out my labs were so much better than just the two days before, that nothing was needed to be done, and I was reassured that my body was actually moving in the right direction to healing itself. This reassurance allowed me to relax a bit and helped me be more "comfortable" being home.
Over the next few days the fluid slowly started to recede just enough that I could eat a little bit more food at the time. On Thursday, June 30 I went in for my first dose of Brentuximab. It was a strange to be back in the same place again. My usual nurse was ready and waiting for me. It was a busy day at the Addison infusion center, and almost every chair was filled. The drug itself is only a half hour infusion, but on the first day there is always a lot to do to prep for a new medicine - and this was a new medicine for the clinic as well. I was there for about 3 hours total. Not so bad, considering my first ABVD treatment I was there for 8 hours! The only pre-med for this infusion is Dexamethazone - a steroid to help curb infusion reactions. The nurse warned me that the pills were very bitter, and they definitely were. I appreciated the warning (and the crackers to get rid of the taste!). Once she got my IV in and connected, she hooked up the Brent. It goes in pretty easily - not at all painful like some of the drugs from before (yay for not needing to get a port put in). She watched me afterwards and gave me some fluids just to make sure I didn't have an immediate reaction that would need attention. I sat with my coloring, and felt pretty normal and comfortable. Then it was time to go home.
After getting home, and getting settled, I was feeling pretty great. I decided to watch the movie version of Rent, and was belting out show tunes for two hours (thanks to the help of Mr. Steroid that I had taken). The highest risk of reactions from Brent is the 24 hours after infusion, so Mike was obsessively taking my temperature in order to make sure I didn't spike a fever. This led to a hilarious incidence of my temperature actually DROPPING and causing me to have to make a call into the on-call doctor at the clinic. I dropped below 95 degrees (according to one thermometer), but I felt fine otherwise. The on-call doctor said it wasn't a concern, so I was able to go to sleep and not have to keep checking. Of course it was normal the next day (and every day after that) no problem, but it was a rather funny reason for having to be on "fever watch."
Each day after chemo my swelling seemed to be going down. By fourth of July I was feeling comfortable enough that I could sit up and go to a family cook out. I still needed help to get around and in and out of the car and things like that, but I was feeling like it wasn't as painful as it had been. It was nice to get out of the house and see other people! I lasted about 3 hours and two plates of food in the heat, and then we headed home. It was a relaxing day. The next three nights I was up every couple of hours peeing out tons of fluid. Each day there was a significant difference in the swelling and my comfort. I was able to sit up for more of the day each day, and was able to finally have my legs back to normal by Wednesday when I had to go to my doctor's appointment. And, oh yah, the tumor on my back was visibly shrinking! It actually hurts when it shrinks, but the pain is totally worth it in the end. She was very happy with my progress, but was concerned about my high heart rate. An EKG showed nothing to worry about immediately, but she was glad that VNA was coming out the next day to check on things again. (More on this in another post.) Down to 106 pounds though, but with the fluid gone, my appetite was coming back full force and I have been eating non-stop ever since.
So far this drug has been a blessing. It has caused some additional things to worry about and think about, but it is acting as it should in my body, and has helped immensely already. Keep your fingers crossed that it will continue to work just as well in future doses, and that I can be done with this all by the end of the summer! Here's hoping!
As always, thank you again for all of your support, and if you want to help, or know someone who wants to help out, please take a look at our Needs page and contact me if you have any questions or just want to chat. It's quite boring here after all.
Saturday, July 2, 2016
It's raining, It's Pouring…..
A Terrible Tragedy:
On May 23rd we got word that Mike's mom had gone into a coma. We got ready to send him to Chicago the next morning so that he could be there. She had done well overnight and it was decided that Mike would not leave in such a hurry, and that he would go later to see her. He wanted to get Lochlan and I set up with some concrete help before he left. She came out of the coma, and was doing cardiac rehab near her home in Illinois. Well, life gets crazy, and before we knew it it was June 10th and we got the call that she was again not well. I booked Mike for the next morning, and he was on his way. Sadly, on the morning of June 11th, Mike's mother passed away. She had been battling congestive heart failure for over ten years, and her heart just couldn't keep up any longer.
Having battled cancer herself 3 or 4 times during her life, she was not a stranger to cancer. She nursed many family members with different cancers (mostly breast cancers) back to health or comfortably to death. She was a tried and true caretaker who spent her life caring for others when they needed it the most. But she had lived it. She had survived it. And she had never let it slow her down. She was a true warrior who came back from the brink more times than anyone should ever have to do. I admire her for that.
You see, Mike has spent his whole life as a cancer caretaker. His mother's first diagnosis came at his ripe-old-age of 6. Being the oldest, he remembers caring for her over the years. He remembers the treatments and the ups and downs. He remembers it coming back 30 years later after a 1% chance of return. He speaks of her resilience and her confidence and her unwillingness to back down against the fight. She epitomizes the war on cancer - a never ending siege that comes and goes, but is not given into or compromised with. She was a truly amazing woman - one a wish that I had gotten the chance to spend more time with.
(obituary)
A Terrible Emergency:
Mike's trip to Illinois ran right into a business trip to Atlanta so he went straight there. He was home a week after he left.
Not 24 hours after Mike got home, I spiked a high fever. I was taken to the ER and admitted to the hospital for a week. My diagnosis - Pneumonia - but I was also in need of blood and severely malnourished. I received two units of blood, three different IV antibiotics, and a host of tests - including a bronchoscopy and full CT scan, and lots of food.
The month of May and half of June became the "Experiment" (as one of my practitioners calls it). No different than when conventional treatments are tried and fail, the combination that I tried did not work for my body. The combination of the Ketogenic diet (which I had been feeling pretty confident about) and the high dose cannabis oil (which pretty much had me sedated for most of the days) didn't have the predicted effect. Instead, the heavy sedation and full feeling I got from the high fat diet left me unable to eat enough food to keep my body healthy. The reality is that I just waited too long to try and put multiple high intensity therapies together. I let my complacency toward my cancer get the better of me, and I let my "strong willed" attitude blind me to the changes just a bit too long.
It took a good fever to kick me in the ass and wake me up to the fact that my current - stressful, bereaved cancer parent, entrepreneurial, mother-to-a-toddler, PTSD, financially unstable (read BROKE) - life was not conducive to my "I'm fine" attitude toward my disease. The constant stress finally caught up, and my body finally gave me a warning.
I had my first ever true panic attack in the hospital. This is the first time I have been hospitalized for my cancer (only other times were for kidney stones and having babies), and it was a reality that I was not ready to face. I kept having them, pretty much every day, the whole time I was there. You see, Saoirse died following a series of extremely similar symptoms (with very different causes). And while I was reassured over and over again that this was a very different situation (hers was tumor related and mine was mostly infection/nourishment related), the image in my head was still the same - I was going to swell, have trouble breathing, move up to the ICU, and never come home. And while I know that Mike and my parents and family were experiencing the same trauma watching from the outside, living it from the inside has been a terrible nightmare. My one and only goal was to get OUT of the hospital.
After nearly a week in the hospital, and all bacteria cultures coming back negative, I came home that Friday afternoon with a plan. (I did go back to the ER Sunday morning after a mini panic attack about still being swollen, but all that they did was labs that reassured me that I was getting better, and sent me home.) It was time to finally say enough is enough to this cancer and take back control. I was ready to take control on my terms, in my own way. I was ready to ADD convention therapy into the picture. I made a plan with my oncologist to start Brentuximab Vedotin one week from going home.
As all of you know this was my "back-up" drug. Now, Murphy's law says that if you have a back-up, you won't need it, but life doesn't always follow that rule. Very quickly I was able to put in place my plan of action for this additional treatment (kudos to the amazing teams that work with my oncologist and deal with my very demanding self).
I AM NOT GIVING UP MY ALTERNATIVES!!! I will still be going to Tong Ren, using cannabis oil (at a much lower dose - and with full knowledge/encouragement of my oncology and nursing team - its great side effect management anyway), and, while I won't be doing full on Keto for the moment, a whole foods - no sugar- lower carb diet.
With my current status of swollen and at high risk, I need constant eyes on me and care. I cannot dress myself, wash myself, get my own food, or get up down and around myself. I cannot be alone with Lochlan, and I cannot care for him - which means he needs care too. Mike has taken on a full time caretaker roll as well as full time business roll, which means he really hasn't been working much. This has led to extreme financial stress for us personally. We are very careful to keep CareAline going so that we can continue to help all the patients we can with our products, so we allow our personal finances to slip rather than the business'.
A Terrible Situation:
Currently we are in a survival mode situation. We are close to drowning financially. Not only are we behind on our mortgage and utilities, but putting the right kind of food on the table is getting increasingly difficult. We are facing the fact that we have no idea where or how we are going to catch up. It's seeming more and more hopeless that we can figure out a way to get financial assistance from programs or the state in time to make a difference. I am working on assistance applications, however those take time (and sadly many take me having to physically be able to go to an office and apply) and it will be a while before it all kicks in. Being a self employed family makes paperwork extremely complicated, and often times makes it so that we can't figure out how to make the applications work. Any support - financial or otherwise - is more than appreciated, and I know that some day we will be able to give back as much or more than the amazing support we have and will receive.
We also have immediate needs at home. Until I can get situated with a state paid for caretaker, we have to have two EXTRA people here at all times. One for me and one for Lochlan. I need constant care, and so does he, and Mike NEEDS to be able to work at least some hours so that CareAline stays afloat. For those who can't be a caretaker, we also could use some meals that we can put in the freezer or the random errand or household item done. For those that have already reached out and helped, I am truly grateful and please know it is not overlooked and not taken for granted. I am linking to a page on here that has our specific needs that you can look over for insight.
(Needs) - (Meal Train Link to sign up for meal delivery)
Thank You!
I just want to say thank you for everything. I know that many have been at odds with my decisions, but that is not what I am focusing on. I am focusing on the now - the reality that is today, and going through things one day at a time. I will post an update on how the drug is going and that type of things in a day or two. But for now, THANK YOU, and happy fourth!
Wednesday, April 13, 2016
The Alternative/Conventional Internal "Battle"
I know I will never get by all the skeptics, but I want to put something straight for those who think I'm "deciding to die" by doing alternative therapies (and think my husband should be "putting his foot down" and forcing me).
I am not willy nilly looking at people selling snake oil and impossible promises. I am researching -through NIH articles and other such reliable sources, as well as other doctors consultations and recommended web information - BOTH conventional and alternative therapies. I have two oncologists. I have spoken with both of them.
Conventional Options:
Stem Cell Transplant - this is not a choice I will take. It NEVER has been. I have done immense amounts of research (We ALSO chose to not put our child through this treatment - we were told later it was a good thing because it WOULD NOT have worked). This is not a point of discussion.
Brentuximamb and Vendotin - This is an approved drug that is a chimeric monoclonal antibody connected to a chemotherapy. This means that it is less toxic to healthy cells than normal chemo, but still comes with some side effects that are typical of chemotherapy and has the potential to induce other cancers later. This drug has been shown to put patients into SHORT TERM remissions (average is about 6-9 months - this is directly from data from my oncologist!) - and is often used as a prep for stem cell transplant. This is my emergency option as it is approved and I can be put on it within about 48 hours if I need to be, and it can be done by my home oncologist and hospital.
Nivolumab and other PD-1 inhibitors - This is the ONLY conventional drug out there that I have any true interest and faith in. I am not a fan of the trial designs I have seen, nor am I qualified for many of them as I refuse to do a SCT. This drug still has some very dangerous side effects attached to it, and the trials have an overwhelming overuse of radiation containing scans that I am not in favor of. I have spoken to my oncologist at Dana Farber (the one who is in charge of these trials for Hodgkin's). This is the only drug that he recommends for me based on my history and beliefs. THERE IS NOT AN OPEN TRIAL FOR THESE DRUGS IN BOSTON CURRENTLY - THEY WILL OPEN SOME MORE IN 3-6 MONTHS. So there's that. It will be there down the line. This is NOT a non toxic therapy, although it is less toxic than any of the others currently available. It also has not been used on Hodgkin's for long enough to have "cure rate" statistics - though it is showing promising remissions in many many patients. (to my knowledge of personal acquaintances - the longest I have heard was 1 year 8 months and going strong).
Alternative Options:
Tong Ren - Based in traditional chinese medicine, and with a focus on cancer as a metabolic disease (which it is) and a blockage of bioelectricity transferring properly through the body, this is the treatment that has been keeping me going for the past 2 years. The practitioners have been practicing this system for over 25 (if not over 30) years and have had amazing success with many many many many cancer patients. (I watched a girl with DIPG - a tumor that has a 0% cure rate with conventional therapy - get better in two months and start going back to her normal life!) There are patients there who should have died ten years ago (in fact one was saying that he is the ONLY person with his sarcoma left alive since he was diagnosed 10 years ago compared to his oncologists other patients who did chemo). A doctor who now works at Tufts University - Dr. Michael Levin (who was healed as a child by Tom Tam, the director and creator of the Tong Ren system) - is now putting this into true study on cancer. He is about 20 years behind what Tom is doing at his centers. http://ase.tufts.edu/biology/labs/levin/research/presentations.htm
Hyperthermia - Hyperthermia (which means “elevated temperature”) destroys cancer cells by raising the tumor temperature to a “high fever” range, similar to the way the body uses fever naturally when combating other conditions. In the US, this is FDA approved for some cancers to be done in conjunction with other conventional therapies to increase their effectiveness. In alternative centers it is used by itself as well as in conjunction with other anti-cancer treatments. It can also have a synergistic action with a Ketogenic diet as it increases the ketones in the body.
http://www.cancer.gov/about-cancer/treatment/types/surgery/hyperthermia-fact-sheet
Ketogenic Diet - A very low-carbohydrate, high-fat, adequate protein diet. Properly administered, it will decrease circulating glucose and increase ketone bodies, which are a good alternative source for fuel in our bodies and are produced when the liver breaks down fat. The goal is to starve the cancer of it's preferred fuel source, glucose. Cancer cells cannot metabolize ketones for fuel.
http://www.maxloveproject.org/ketogenic-research-summary
http://www.nutritionjrnl.com/article/S0899-9007(12)00186-4/pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2001676/pdf/brjcancer00506-0050.pdf
Cannabis Oil - Marijuana in oncology may have potential for use as an antiemetic, for refractory cancer pain, and as an antitumor agent. However, much of the data are based on animal data, small trials, or are outdated. Only recently has cannabis become legal in many states, and it still is not completely cleared at the federal level. This (in my opinion) inhibits medical studies. Other information and studies I have found are using SYNTHETIC and derived individual cannabinoids, rather than whole plant or oil derived from whole plant, which (in my opinion) defeats the purpose of studying as synergistic effects of the over 80 cannabinoids found in marijuana will have much to do with its effectiveness and anti-tumor actions. It is proven to help with tumor pain and appetite stimulation - two things that are beneficial to any cancer patient (although much of my pain is gone, I could use to eat more most of the time). There are many groups who have seen evidence of anti-tumor effects in their members and patients.
http://oncology.jamanetwork.com/article.aspx?articleid=2504173
http://www.cureyourowncancer.org/how-cannabis-oil-works.html
http://www.ncbi.nlm.nih.gov/pubmed/12091357
Massage - We all know that stress can be a major contributor to cancer growth and that reduction of stress is a huge component to healing. I don't think I need to post any articles on this one. Massage = relaxation = lower stress. Enough said.
I am sharing this in an effort to explain to those I don't speak with often what I am doing and why and how I have come to my decisions. It's not about debating evidence, or seeking advice, it's about sharing my pathway on this journey and allowing others to understand my footsteps. Thank you to everyone who has continued to support our family through this time. We are truly grateful and love you all.
If you can support my expenses while going through this journey, please consider a donation using the button at the top right corner of my blog, or you can contact me for other options (or see the below blog post).
http://www.cancer.gov/about-cancer/treatment/types/surgery/hyperthermia-fact-sheet
Ketogenic Diet - A very low-carbohydrate, high-fat, adequate protein diet. Properly administered, it will decrease circulating glucose and increase ketone bodies, which are a good alternative source for fuel in our bodies and are produced when the liver breaks down fat. The goal is to starve the cancer of it's preferred fuel source, glucose. Cancer cells cannot metabolize ketones for fuel.
http://www.maxloveproject.org/ketogenic-research-summary
http://www.nutritionjrnl.com/article/S0899-9007(12)00186-4/pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2001676/pdf/brjcancer00506-0050.pdf
Cannabis Oil - Marijuana in oncology may have potential for use as an antiemetic, for refractory cancer pain, and as an antitumor agent. However, much of the data are based on animal data, small trials, or are outdated. Only recently has cannabis become legal in many states, and it still is not completely cleared at the federal level. This (in my opinion) inhibits medical studies. Other information and studies I have found are using SYNTHETIC and derived individual cannabinoids, rather than whole plant or oil derived from whole plant, which (in my opinion) defeats the purpose of studying as synergistic effects of the over 80 cannabinoids found in marijuana will have much to do with its effectiveness and anti-tumor actions. It is proven to help with tumor pain and appetite stimulation - two things that are beneficial to any cancer patient (although much of my pain is gone, I could use to eat more most of the time). There are many groups who have seen evidence of anti-tumor effects in their members and patients.
http://oncology.jamanetwork.com/article.aspx?articleid=2504173
http://www.cureyourowncancer.org/how-cannabis-oil-works.html
http://www.ncbi.nlm.nih.gov/pubmed/12091357
Massage - We all know that stress can be a major contributor to cancer growth and that reduction of stress is a huge component to healing. I don't think I need to post any articles on this one. Massage = relaxation = lower stress. Enough said.
I am sharing this in an effort to explain to those I don't speak with often what I am doing and why and how I have come to my decisions. It's not about debating evidence, or seeking advice, it's about sharing my pathway on this journey and allowing others to understand my footsteps. Thank you to everyone who has continued to support our family through this time. We are truly grateful and love you all.
If you can support my expenses while going through this journey, please consider a donation using the button at the top right corner of my blog, or you can contact me for other options (or see the below blog post).
Monday, March 21, 2016
Some Progress….
So if you missed the Facebook update I posted today, here's what it said….
Ok - I'm officially in Ketosis, the lymph node in my armpit is like half the size it was, the one pushing on my liver has gone down enough that I can lay on my stomach comfortably again, and besides the fact that my muscles need building up, I have enough energy to be a semi functional person.
So here is my goal. For Saoirse's first birthday, we had a party in the summer - we called it "saoirse's 1 and kezia's done!" This summer Lochlan turns three. This year's party is going to be "Lochlan's 3 and kezia's cancer free!" - that's the goal. Cancer free by July - that gives me just about 5 months. Let's do this!!!
I'm still experiencing some pain in my hip and lower back which is both muscular and disease related, but hopefully that will begin to subside as I keep making progress - and when I get my medical cannabis license all sorted out.
I updated my other post talking about what other things I was working on, and I will put it here as well so you can see what measures I'm taking to combat my disease - now that I'm focusing wholly on my health as the first priority. (I keep kicking myself that I didn't put myself first sooner.)
Thank you so much to those who have donated and supported me through this so far. I have a ways to go, but I am heading in the right direction it feels like. Any support you can give - either donation or other needs - I greatly appreciate it. Please share with anyone who you think could be of support for me during this time.
Immediate needs:
$125 graciously the local Y has donated a 6 month membership for me.
My body is giving me a hard time about moving around. My muscles are just not keeping up. Swimming would be great exercise for me to keep my lymph moving while supporting my body weight.
Far Infrared Mats:$750 I was able to use donations to date to purchase the mats. Thank You!
Hyperthermia therapy is a great way to systemically kill cancer cells. I have done a TON of research on this - and it's one of the therapies included in the comprehensive treatments that are done at the centers on the west coast. I can start this at home with far infrared mats. (They have to heat up to above 60 degrees Celsius to be effective, which is why the cost is so high. I have talked directly to this company's distributor and received documentation about the testing that was done for these specific mats.) They will also help relieve some of the chronic pain that I have been experiencing.
Medical Cannabis: $TBD (waiting on call back for pricing from dispensary as well as license processing)
I have been dealing with a fair amount of discomfort, and some pain - especially at night. Pain medication has helped, but it decreases my appetite and keeps me from eating enough food to stay healthy. Massachusetts is a legal medical cannabis state, and I have found a local dispensary that can help me with both pain management and appetite stimulation, as well as anti cancer action using cannabis oil. I was also recommended (by the CannaKids organization) to a consultant who can help me pick the exact strains that will be most effective for me personally. (Half hour consult - $75/ Hour consult - $150.) Cannabis has a synergistic effect with the ketogenic diet.
Ketogenic Diet: $200 / wk
I have found a great cookbook and a couple support groups to help me with doing this diet as a treatment for cancer (se below for more info on my choice on this). Groceries for the recipes have added quite a bit to our grocery bill. Help with that cost is greatly appreciated as well.
Massage:Gift Certificates
Massage is something that I definitely need. My stress level is quite high, and although I have been working to find ways to de-stress, massage would be great. I currently have three gift certificates that I will be using with cancer certified massage therapists.
Lymphatic Drainage Massage/Myofacial Release: $TBD
I am looking into this currently. I have been recommended a local practitioner and will discuss with her about my condition and her recommendations. More soon on this. (This may not be an option - I have to consult with my oncologist about safety)
TO DONATE:
PayPal:
Bank:
Cancer Treatment for Kezia
℅ Peoples United Bank
1 Conant St.
Danvers, MA 01923
Mailing Address:
Kezia Fitzgerald
PO Box 61
Danvers, MA 01923
*The rest of the costs I will find out about within the next week or so. I will update this post as that info becomes available to me.* - I have heard from one center - I was not impressed with their intake, and concerned about the information. The second center has not yet responded with a consult date.
Lots of people have asked for ways they can help us. Other than donating to help fund the treatment, and sharing this post so that others can offer their support, there are some things that would be helpful to us at home. Mike has been a saint in basically taking over running our entire life. He not only runs CareAline every day, he takes care of Lochlan, cleans the house, cooks our meals, does all the errands, and takes care of me. If I can take some of those things off his plate, I know it would help him out a lot. (I'm pretty much useless these days)
Prepared Meals:
I am on a very specific diet - the Ketogenic Diet. I have done a LOT of research on this too, and have decided to get my body into ketosis to help starve the cancer cells and make treatments more effective (this is a good idea for ANY cancer patient - alternative or conventional therapies). This diet is very time consuming as it basically eliminates all processed food and requires a lot of cooking. The cooking isn't difficult, it's just constant. If anyone is on this diet and wants to help me figure out a good flow of cooking, I'd LOVE the help. If anyone wants to make a few meals that we can have on hand to heat up, I can point you in the direction of some recipes (or you can google or pinterest for them). I try to avoid too much dairy, with the exception of good grass fed butter (kerrygold rocks!), and too much meat.
Help with Lochlan:
Unfortunately, Lochlan is getting a lot of TV time here. I can do more sedentary activities with him on good days (stringing beads and play dough are some faves), but I can't really get out and run around with him. I just don't have the energy these days.Thursday mornings are our highest need time. I go to treatment in Haverhill - I leave the house at 7:30 and don't get back sometimes until 11 or later. I always feel like I'm in a rush to leave so I can get back to let Mike get a meal in. If there is someone (or someones) who would be able to take Lochlan on Thursday mornings, that would be amazing. Thank you to those that have offered your help and will be helping with our Thursday mornings! Playdates during afternoons are welcome and appreciated.
Hosting a Fundraiser:
I have heard a few people mention that they would be interested in hosting a fundraiser. If you are interested, please email me and let me know - cancertreatmentforkezia@gmail.com
My body is giving me a hard time about moving around. My muscles are just not keeping up. Swimming would be great exercise for me to keep my lymph moving while supporting my body weight.
Far Infrared Mats:
Hyperthermia therapy is a great way to systemically kill cancer cells. I have done a TON of research on this - and it's one of the therapies included in the comprehensive treatments that are done at the centers on the west coast. I can start this at home with far infrared mats. (They have to heat up to above 60 degrees Celsius to be effective, which is why the cost is so high. I have talked directly to this company's distributor and received documentation about the testing that was done for these specific mats.) They will also help relieve some of the chronic pain that I have been experiencing.
Medical Cannabis: $TBD (waiting on call back for pricing from dispensary as well as license processing)
I have been dealing with a fair amount of discomfort, and some pain - especially at night. Pain medication has helped, but it decreases my appetite and keeps me from eating enough food to stay healthy. Massachusetts is a legal medical cannabis state, and I have found a local dispensary that can help me with both pain management and appetite stimulation, as well as anti cancer action using cannabis oil. I was also recommended (by the CannaKids organization) to a consultant who can help me pick the exact strains that will be most effective for me personally. (Half hour consult - $75/ Hour consult - $150.) Cannabis has a synergistic effect with the ketogenic diet.
Ketogenic Diet: $200 / wk
I have found a great cookbook and a couple support groups to help me with doing this diet as a treatment for cancer (se below for more info on my choice on this). Groceries for the recipes have added quite a bit to our grocery bill. Help with that cost is greatly appreciated as well.
Massage:
Massage is something that I definitely need. My stress level is quite high, and although I have been working to find ways to de-stress, massage would be great. I currently have three gift certificates that I will be using with cancer certified massage therapists.
Lymphatic Drainage Massage/Myofacial Release: $TBD
I am looking into this currently. I have been recommended a local practitioner and will discuss with her about my condition and her recommendations. More soon on this. (This may not be an option - I have to consult with my oncologist about safety)
TO DONATE:
PayPal:
Bank:
Cancer Treatment for Kezia
℅ Peoples United Bank
1 Conant St.
Danvers, MA 01923
Mailing Address:
Kezia Fitzgerald
PO Box 61
Danvers, MA 01923
*The rest of the costs I will find out about within the next week or so. I will update this post as that info becomes available to me.* - I have heard from one center - I was not impressed with their intake, and concerned about the information. The second center has not yet responded with a consult date.
Lots of people have asked for ways they can help us. Other than donating to help fund the treatment, and sharing this post so that others can offer their support, there are some things that would be helpful to us at home. Mike has been a saint in basically taking over running our entire life. He not only runs CareAline every day, he takes care of Lochlan, cleans the house, cooks our meals, does all the errands, and takes care of me. If I can take some of those things off his plate, I know it would help him out a lot. (I'm pretty much useless these days)
Prepared Meals:
I am on a very specific diet - the Ketogenic Diet. I have done a LOT of research on this too, and have decided to get my body into ketosis to help starve the cancer cells and make treatments more effective (this is a good idea for ANY cancer patient - alternative or conventional therapies). This diet is very time consuming as it basically eliminates all processed food and requires a lot of cooking. The cooking isn't difficult, it's just constant. If anyone is on this diet and wants to help me figure out a good flow of cooking, I'd LOVE the help. If anyone wants to make a few meals that we can have on hand to heat up, I can point you in the direction of some recipes (or you can google or pinterest for them). I try to avoid too much dairy, with the exception of good grass fed butter (kerrygold rocks!), and too much meat.
Help with Lochlan:
Unfortunately, Lochlan is getting a lot of TV time here. I can do more sedentary activities with him on good days (stringing beads and play dough are some faves), but I can't really get out and run around with him. I just don't have the energy these days.
Hosting a Fundraiser:
I have heard a few people mention that they would be interested in hosting a fundraiser. If you are interested, please email me and let me know - cancertreatmentforkezia@gmail.com
(For more insight into my decisions around alternative vs. conventional therapies, please stay tuned for a later blog post coming soon.)
Tuesday, March 8, 2016
I Wish I Could Live at Tong Ren!
Tuesday mornings. A morning that I get up, put my kid in the car, meet my mother at Panera Bread to give her said kid, and drive up the highway to my Tong Ren treatment. I get there before anyone else, take over the couch, pick out a blanket, put on my equipment, and lay down and drift off to sleep. It's the best nap you could ever ask for - Chi filled and deep. By the time I wake up the room is full, people are all banging dolls and chatting and laughing, and I'm there, drowsy and pain free (usually). Today I went the extra mile and got acupuncture before I left. Acupuncture days are the best. It's so calming, and it rids me of any residual pain, and leaves me feeling energized. Then I get in my car and on the drive home back comes the twinges and pain in some places. I hate the car and what it does to me right now. It ruins all the goodness that I just got. Oh how I wish I could just live there and never leave, then maybe I'd get better faster. Or at the very least, not have to deal with pain while I'm driving home.
But, alas, I can not live there. But I can enjoy my time when I am there.
But, alas, I can not live there. But I can enjoy my time when I am there.
Saturday, March 5, 2016
Pain Free Sleep!
Today has been a good day. I have had no pain today, which is great since more often than not I have some twinges or can't get comfortable. It has led to me sleeping most of the day, but that is much needed!
My sleep is often interrupted by pain. It comes in waves and is sometimes constant, dull and uncomfortable, and other times sharp, powerful and unbearable. The latter is less frequent. For the most part I just can't find a comfortable position to sit or lay in, and standing is difficult most of the time.
It makes me quite annoying - I really never have had to deal with chronic pain. I find myself loose patience faster, snap angrily more, and in general just be pissy. Traits that I do not normally have (although grief after loosing Saoirse put some of those on my plate, but not nearly as constantly). It makes it very hard with a toddler who is getting into the throwing tantrums over nothing stage. I loose my cool quite quickly, which doesn't help him or me, and he usually ends up needing rescuing while I go and try to slow my heart rate. Sleep deprivation doesn't help the situation either, and fighting a "strong willed" toddler to take a nap when all you want to do is go take one yourself seems like some sort of medieval torture.
The days that I can get comfortable I try to take advantage of the uninterrupted sleep! Some may look at this as worrying, or lazy, but I look at it as progress! Especially when that uninterrupted sleep is free of night sweats! It means that my body is truly resting and not fighting itself from the inside out. A feeling that makes me know I'm doing the right thing.
So today I got to sleep - and I'm feeling fully rested. Now to get up and see if I can do something like a normal person - play with my crazy toddler!
Thursday, March 3, 2016
When Cancer Interrupts Life
*Updates highlighted in yellow*
For the past two years I have been battling my relapsed Hodgkin's Lymphoma. I chose to do alternative therapies instead of conventional, toxic, chemotherapies. I had done my research on so many different treatments, conventional and alternative, and I knew toxic was not the choice for me.
Almost exactly two years ago I found the therapy that has been my only treatment so far - Tong Ren. Based in Traditional Chinese Medicine, mixed with modern technology and understanding of the metabolic nature of cancer and it's bioelectricity, its truly kept me going for the past two years. I have felt great, been able to live my normal life, and it seemed to be shrinking my lymph nodes - slowly, but surely (at least the ones I could feel on the outside).
I was feeling great, and with the exception of what I thought was a back injury in the late fall/early winter, I was able to keep up with normal life no problem. With the amount of travel we do for CareAline, it fit in perfectly as I was able to log into group energy sessions online, and bring my sound wave therapy machine with me when I traveled.
At the end of January this year, I went in to have a CT scan as it had been a year since my last. I was looking forward to great news - that the rest of my body was showing the same as the nodes I could feel from the outside. While I did get partially good news (yes, I wasn't crazy, many of my lymph nodes were smaller and showed improvement), there was also some pretty bad news on my scan. There were many nodes that had grown, and unfortunately the ones that had, were the ones starting to cause me problems (that nagging back injury? not an injury - a node behind my kidney and one on my iliopsoas muscle), including a softball size node displacing my liver. I was devastated.
Putting my health first has never really been a priority. I was doing ok, and nothing was interrupting my daily life, so I kind of just did what I had to to get by. I had other priorities - like a business and a toddler. Now I was faced with a decision - give up, or put my health first. At first, I just wanted to give up. It seemed like the much easier option, but its not a very attractive one. So, I decided I have to do something. I did a bunch more research on options from conventional to alternative, and conventional just doesn't seem to be offering me much in the way of true life extension. So I'm delving deeper into more complete and intensive "alternative" therapies.
I have been lucky up until now - the Tong Ren practitioners I have been going to have been graciously treating me for free for over a year now. But the new centers will not be so forgiving. It will cost upwards of $60,000 for me to do an inpatient treatment if that is what is recommended to me. The two centers I'm in contact with on the west coast have some amazing treatment options and have some amazing statistics of survival, but nothing will be covered by insurance - not to mention the travel costs to get there.
Waiting for responses and reviews of my medical records has been tedious - partially because I was so wishy washy about getting the forms filled out and sending the records (sometimes its hard to be an adult!). I have started a bank account and PayPal account specifically for fundraising for treatment. I'll post addresses and links below. There are also some things that would help me immensely at home until I get set up and raise enough money for the full treatment.
Immediate needs:
Local YMCA membership:$125 graciously the local Y has donated a 6 month membership for me.
My body is giving me a hard time about moving around. My muscles are just not keeping up. Swimming would be great exercise for me to keep my lymph moving while supporting my body weight.
Far Infrared Mats:$750 I was able to use donations to date to purchase the mats. Thank You!
Hyperthermia therapy is a great way to systemically kill cancer cells. I have done a TON of research on this - and it's one of the therapies included in the comprehensive treatments that are done at the centers on the west coast. I can start this at home with far infrared mats. (They have to heat up to above 60 degrees Celsius to be effective, which is why the cost is so high. I have talked directly to this company's distributor and received documentation about the testing that was done for these specific mats.) They will also help relieve some of the chronic pain that I have been experiencing.
Medical Cannabis: $TBD (waiting on call back for pricing from dispensary as well as license processing)
I have been dealing with a fair amount of discomfort, and some pain - especially at night. Pain medication has helped, but it decreases my appetite and keeps me from eating enough food to stay healthy. Massachusetts is a legal medical cannabis state, and I have found a local dispensary that can help me with both pain management and appetite stimulation, as well as anti cancer action using cannabis oil. I was also recommended (by the CannaKids organization) to a consultant who can help me pick the exact strains that will be most effective for me personally. (Half hour consult - $75/ Hour consult - $150.) Cannabis has a synergistic effect with the ketogenic diet.
Ketogenic Diet: $200 / wk
I have found a great cookbook and a couple support groups to help me with doing this diet as a treatment for cancer (se below for more info on my choice on this). Groceries for the recipes have added quite a bit to our grocery bill. Help with that cost is greatly appreciated as well.
Massage:Gift Certificates
Massage is something that I definitely need. My stress level is quite high, and although I have been working to find ways to de-stress, massage would be great. I currently have three gift certificates that I will be using with cancer certified massage therapists.
Lymphatic Drainage Massage/Myofacial Release: $TBD
I am looking into this currently. I have been recommended a local practitioner and will discuss with her about my condition and her recommendations. More soon on this.
TO DONATE:
PayPal:
Bank:
Cancer Treatment for Kezia
℅ Peoples United Bank
1 Conant St.
Danvers, MA 01923
Mailing Address:
Kezia Fitzgerald
PO Box 61
Danvers, MA 01923
*The rest of the costs I will find out about within the next week or so. I will update this post as that info becomes available to me.* - I have heard from one center - I was not impressed with their intake, and concerned about the information. The second center has not yet responded with a consult date.
Lots of people have asked for ways they can help us. Other than donating to help fund the treatment, and sharing this post so that others can offer their support, there are some things that would be helpful to us at home. Mike has been a saint in basically taking over running our entire life. He not only runs CareAline every day, he takes care of Lochlan, cleans the house, cooks our meals, does all the errands, and takes care of me. If I can take some of those things off his plate, I know it would help him out a lot. (I'm pretty much useless these days)
Prepared Meals:
I am on a very specific diet - the Ketogenic Diet. I have done a LOT of research on this too, and have decided to get my body into ketosis to help starve the cancer cells and make treatments more effective (this is a good idea for ANY cancer patient - alternative or conventional therapies). This diet is very time consuming as it basically eliminates all processed food and requires a lot of cooking. The cooking isn't difficult, it's just constant. If anyone is on this diet and wants to help me figure out a good flow of cooking, I'd LOVE the help. If anyone wants to make a few meals that we can have on hand to heat up, I can point you in the direction of some recipes (or you can google or pinterest for them). I try to avoid too much dairy, with the exception of good grass fed butter (kerrygold rocks!), and too much meat.
Help with Lochlan:
Unfortunately, Lochlan is getting a lot of TV time here. I can do more sedentary activities with him on good days (stringing beads and play dough are some faves), but I can't really get out and run around with him. I just don't have the energy these days.Thursday mornings are our highest need time. I go to treatment in Haverhill - I leave the house at 7:30 and don't get back sometimes until 11 or later. I always feel like I'm in a rush to leave so I can get back to let Mike get a meal in. If there is someone (or someones) who would be able to take Lochlan on Thursday mornings, that would be amazing. Thank you to those that have offered your help and will be helping with our Thursday mornings! Playdates during afternoons are welcome and appreciated.
Hosting a Fundraiser:
I have heard a few people mention that they would be interested in hosting a fundraiser. If you are interested, please email me and let me know - cancertreatmentforkezia@gmail.com
I'm not going to give up. And if things keep going quickly, I have temporary conventional treatments I can do here to "tide me over," even though I'd rather not. My goal is long term remission and no subsequent toxicity induced cancers. I don't think that's too unreasonable. (For more on my research/decisions about conventional and alternative treatments, please see later blog post to be posted soon.)
Thank you so much to everyone who has already supported us through this journey. I often times feel like we are alone, but when we truly reach out, we find so much support.
For the past two years I have been battling my relapsed Hodgkin's Lymphoma. I chose to do alternative therapies instead of conventional, toxic, chemotherapies. I had done my research on so many different treatments, conventional and alternative, and I knew toxic was not the choice for me.
Almost exactly two years ago I found the therapy that has been my only treatment so far - Tong Ren. Based in Traditional Chinese Medicine, mixed with modern technology and understanding of the metabolic nature of cancer and it's bioelectricity, its truly kept me going for the past two years. I have felt great, been able to live my normal life, and it seemed to be shrinking my lymph nodes - slowly, but surely (at least the ones I could feel on the outside).
I was feeling great, and with the exception of what I thought was a back injury in the late fall/early winter, I was able to keep up with normal life no problem. With the amount of travel we do for CareAline, it fit in perfectly as I was able to log into group energy sessions online, and bring my sound wave therapy machine with me when I traveled.
At the end of January this year, I went in to have a CT scan as it had been a year since my last. I was looking forward to great news - that the rest of my body was showing the same as the nodes I could feel from the outside. While I did get partially good news (yes, I wasn't crazy, many of my lymph nodes were smaller and showed improvement), there was also some pretty bad news on my scan. There were many nodes that had grown, and unfortunately the ones that had, were the ones starting to cause me problems (that nagging back injury? not an injury - a node behind my kidney and one on my iliopsoas muscle), including a softball size node displacing my liver. I was devastated.
Putting my health first has never really been a priority. I was doing ok, and nothing was interrupting my daily life, so I kind of just did what I had to to get by. I had other priorities - like a business and a toddler. Now I was faced with a decision - give up, or put my health first. At first, I just wanted to give up. It seemed like the much easier option, but its not a very attractive one. So, I decided I have to do something. I did a bunch more research on options from conventional to alternative, and conventional just doesn't seem to be offering me much in the way of true life extension. So I'm delving deeper into more complete and intensive "alternative" therapies.
I have been lucky up until now - the Tong Ren practitioners I have been going to have been graciously treating me for free for over a year now. But the new centers will not be so forgiving. It will cost upwards of $60,000 for me to do an inpatient treatment if that is what is recommended to me. The two centers I'm in contact with on the west coast have some amazing treatment options and have some amazing statistics of survival, but nothing will be covered by insurance - not to mention the travel costs to get there.
Waiting for responses and reviews of my medical records has been tedious - partially because I was so wishy washy about getting the forms filled out and sending the records (sometimes its hard to be an adult!). I have started a bank account and PayPal account specifically for fundraising for treatment. I'll post addresses and links below. There are also some things that would help me immensely at home until I get set up and raise enough money for the full treatment.
Immediate needs:
Local YMCA membership:
My body is giving me a hard time about moving around. My muscles are just not keeping up. Swimming would be great exercise for me to keep my lymph moving while supporting my body weight.
Far Infrared Mats:
Hyperthermia therapy is a great way to systemically kill cancer cells. I have done a TON of research on this - and it's one of the therapies included in the comprehensive treatments that are done at the centers on the west coast. I can start this at home with far infrared mats. (They have to heat up to above 60 degrees Celsius to be effective, which is why the cost is so high. I have talked directly to this company's distributor and received documentation about the testing that was done for these specific mats.) They will also help relieve some of the chronic pain that I have been experiencing.
Medical Cannabis: $TBD (waiting on call back for pricing from dispensary as well as license processing)
I have been dealing with a fair amount of discomfort, and some pain - especially at night. Pain medication has helped, but it decreases my appetite and keeps me from eating enough food to stay healthy. Massachusetts is a legal medical cannabis state, and I have found a local dispensary that can help me with both pain management and appetite stimulation, as well as anti cancer action using cannabis oil. I was also recommended (by the CannaKids organization) to a consultant who can help me pick the exact strains that will be most effective for me personally. (Half hour consult - $75/ Hour consult - $150.) Cannabis has a synergistic effect with the ketogenic diet.
Ketogenic Diet: $200 / wk
I have found a great cookbook and a couple support groups to help me with doing this diet as a treatment for cancer (se below for more info on my choice on this). Groceries for the recipes have added quite a bit to our grocery bill. Help with that cost is greatly appreciated as well.
Massage:
Massage is something that I definitely need. My stress level is quite high, and although I have been working to find ways to de-stress, massage would be great. I currently have three gift certificates that I will be using with cancer certified massage therapists.
Lymphatic Drainage Massage/Myofacial Release: $TBD
I am looking into this currently. I have been recommended a local practitioner and will discuss with her about my condition and her recommendations. More soon on this.
TO DONATE:
PayPal:
Bank:
Cancer Treatment for Kezia
℅ Peoples United Bank
1 Conant St.
Danvers, MA 01923
Mailing Address:
Kezia Fitzgerald
PO Box 61
Danvers, MA 01923
*The rest of the costs I will find out about within the next week or so. I will update this post as that info becomes available to me.* - I have heard from one center - I was not impressed with their intake, and concerned about the information. The second center has not yet responded with a consult date.
Lots of people have asked for ways they can help us. Other than donating to help fund the treatment, and sharing this post so that others can offer their support, there are some things that would be helpful to us at home. Mike has been a saint in basically taking over running our entire life. He not only runs CareAline every day, he takes care of Lochlan, cleans the house, cooks our meals, does all the errands, and takes care of me. If I can take some of those things off his plate, I know it would help him out a lot. (I'm pretty much useless these days)
Prepared Meals:
I am on a very specific diet - the Ketogenic Diet. I have done a LOT of research on this too, and have decided to get my body into ketosis to help starve the cancer cells and make treatments more effective (this is a good idea for ANY cancer patient - alternative or conventional therapies). This diet is very time consuming as it basically eliminates all processed food and requires a lot of cooking. The cooking isn't difficult, it's just constant. If anyone is on this diet and wants to help me figure out a good flow of cooking, I'd LOVE the help. If anyone wants to make a few meals that we can have on hand to heat up, I can point you in the direction of some recipes (or you can google or pinterest for them). I try to avoid too much dairy, with the exception of good grass fed butter (kerrygold rocks!), and too much meat.
Help with Lochlan:
Unfortunately, Lochlan is getting a lot of TV time here. I can do more sedentary activities with him on good days (stringing beads and play dough are some faves), but I can't really get out and run around with him. I just don't have the energy these days.
Hosting a Fundraiser:
I have heard a few people mention that they would be interested in hosting a fundraiser. If you are interested, please email me and let me know - cancertreatmentforkezia@gmail.com
I'm not going to give up. And if things keep going quickly, I have temporary conventional treatments I can do here to "tide me over," even though I'd rather not. My goal is long term remission and no subsequent toxicity induced cancers. I don't think that's too unreasonable. (For more on my research/decisions about conventional and alternative treatments, please see later blog post to be posted soon.)
Thank you so much to everyone who has already supported us through this journey. I often times feel like we are alone, but when we truly reach out, we find so much support.
Monday, February 29, 2016
Fundraising for a CURE!
This is a short post, as my mind is just not settled enough to write. I have been faced with both good and bad news. The good - about half of the nodes in my body were smaller on my last scan ( something is working somewhere!), but the other half are quite a bit larger and, unfortunately, causing me some problems. I have inquired at two institutions on the west coast, with one more to call. I will be raising funds to cover the cost of treatments, which could rise up to or exceed $60,000. I have set up a bank account specifically for raising funds for treatment. Any support that you can give is amazing. We appreciate all the support we have received already, and hope that this is the last time that we will have to ask for help to get through this monster called cancer.
PayPal:
PayPal:
Subscribe to:
Posts (Atom)