We made it through our first round of high dose treatment. It's good to not have it be an unknown anymore. Chris kept telling me, as I was dreading the first appointment, that it was good the be going on the offensive. I didn't really buy it until we wrapped up -- and then realized that he was right. It did feel good to be doing something that would be actively working to fight this beast off.
I was told to focus on fluids throughout treatment, so I spent the morning loading up. I was ready to float away before I even got to the doctor's office. I'm sure it helps though. I felt pretty good by the time it was over, other than my arm that had the IV was really sore -- and it flat out hurt while the Interferon was going in. I pulled out my meditation app while it was going and it really seemed to help. Who knew? Oddly, I was really craving sushi on our way home -- and called it in. By the time Chris picked it up I was thinking it was probably not going to be the best thing for me to eat. I was able to eat the cooked parts -- and then handed the rest off to him. At that point, I was exhausted. It reminded me of how I felt when I was pregnant. I could not keep my eyes open to save my life...and I just curled up on the chaise while the rest of the family ate dinner. I rallied though -- and that felt good...until I decided to stay up late watching tv with Chris - and then the aches and pains kicked in. I will start going to bed at 9...or at least start taking my evening drugs a lot earlier. I know that all of these side effects are going to accumulate and get worse, but I at least have hope that if I can get through them, I'll be functioning at some point during the day. I have hope. Hope is good.
We wrapped up last week with an evening out with friends. Friends that we haven't seen, in some cases, for years. The stories and the laughs were a wonderful way to wrap up my week pre-treatment. I did have my first taste of how isolating a sickness can be. For me, the evening was a touchstone of happier times and a bit of a celebration before facing a future that is really scary to me. For everyone else - it was just a fun night out with friends. While I loved every minute with this crew, it was the first time that I felt lonely while I was with them. I am so thankful for my support system -- and I credit everyone with keeping me focused on having a positive outlook. But...yeah, at the end of the day, I'm still going to need to find it within myself to come out swinging each and every day.
My parents are back and we are getting into what will be our new routine this month. The girls are loving the added attention - and they did a great job getting all of their homework and chores done before I got home from treatment. May it continue! I think that the first round of our multil-generational lifestyle that we had during my surgery prepared them for this round. They seem to be sticking with their routine and not thinking that all grandparent time is play time and opportunities to see what they can get away with. I love my girls -- but they sure know how to push the envelope when someone else is managing them. Secretly, I'm proud.
Time to guzzle more water and gear up for round two. One down, 163 treatments left to go....
Tuesday, October 8, 2013
Thursday, October 3, 2013
Day 51
I put myself in a tough mindset this week. I've been very focused on all of the things that I need to get done 'before'...before I start treatment, but - as my mind has a tendency to do, it is before who knows what. This morning I was awake at 4am, distraught, (or - as distraught as I can be these days, now that they have started me on the Zoloft) that we had never had any formal family pictures taken. You know, the cute ones where we are all giggling together in black and white. It's always been something 'on the list' for when I lose 20+ pounds. Stupid. So now, I'm worrying about the fact that we never got it done -- and now treatment is going to start and WHO KNOWS what will happen. Yikes. Clearly, a 4am panic attack. However, I informed Chris, that once the first month of treatment is done, we are going to make it happen. While I don't necessarily think I'll really want a reminder of this year -- I'd like it to be a reminder to not wait --- for anything. Not for the next 20 pounds, not for when we aren't having to wade through medical bills, not for when it is more convenient. We should be capturing every year and making sure that our girls can look back and remember when we giggled in black and white.
I met with the nutritionist this week to learn what I need to get through the treatment. Fluids, fluids and more fluids and protein. Fluids will help me manage the toxicity and the protein is to keep me from losing weight. The irony is not lost on me that this is the first time I've been told not to lose weight...of course, it is when I can't seem to keep it on. It's right up there with being someone that can't stand to wear shoes...if I could've lived in flip-flops, I would have - and now, clearly, my flip-flop days are over. The universe has a sense of humor.
I had my first Reiki session today. I didn't really know what to expect -- but found the whole thing fascinating. Our nanny's mom has been learning Reiki - and she wanted to work / practice on me. This was the first time I had spent any time with our nanny's mom -- although she has spent a lot of time with our girls. Just getting to hang out with her was uplifting and it pulled me out of the residue of my 4am funk. The Reiki (or is it reiki?? I'm not sure what is appropriate...) was completely 'hand's off' -- but while she was working on my head, my hair was standing on end -- it was crazy. I could actually feel pressure on my leg at one point, but she never touched me. I'm not completely sure what it did for me, other than leaving more energized and out of the rabbit hole for the day. I'm hoping to go back next week as I get into treatment.
Tomorrow is chemo class. Strong potential for another funk. On days when I can get out, do errands, hang with the girls...I can almost pretend that life is back to the old normal, with the exception of being down a toe. But, when I head into the doctor's office, the reality of what I'm facing comes back and I have to muster up the focus to keep in the right frame of mind. That fighting spirit. It's there...but it likes to hide on doctor days.
I've been doing some canning again -- see above for pretending that things are back to normal. I consider it therapy as it keeps me on my feet. I made the mistake of tasting my raspberry jam today -- and after nearly 6 weeks of next to no sugar, it tasted overly sweet and kind of disgusting to me. I was never much of a jam person anyway -- I just like making it...but my reaction to it was a surprise. I might just be able to bake the girls some cookies and keep from trying any...sugar does not taste good anymore.
For tonight, I have gratitude for a week of nearly normal. Our new normal. I picked the girls up from school, helped them with homework, got them to follow-through with their chores (although, sadly, they still leave a trail of stuff behind them wherever they go) and have dinner as a family. We've had time to talk about what is going on, time to laugh and time to remind the girls that mom hasn't changed, much to their dismay. Tomorrow, we have a date night scheduled and will get to spend time with friends that we haven't seen in awhile -- and get to hang out with each other, just the two of us. This week has reminded me that life is good. No qualifications, no 'despite what we are facing'...it is just simply good. We have each other - and we are blessed.
I met with the nutritionist this week to learn what I need to get through the treatment. Fluids, fluids and more fluids and protein. Fluids will help me manage the toxicity and the protein is to keep me from losing weight. The irony is not lost on me that this is the first time I've been told not to lose weight...of course, it is when I can't seem to keep it on. It's right up there with being someone that can't stand to wear shoes...if I could've lived in flip-flops, I would have - and now, clearly, my flip-flop days are over. The universe has a sense of humor.
I had my first Reiki session today. I didn't really know what to expect -- but found the whole thing fascinating. Our nanny's mom has been learning Reiki - and she wanted to work / practice on me. This was the first time I had spent any time with our nanny's mom -- although she has spent a lot of time with our girls. Just getting to hang out with her was uplifting and it pulled me out of the residue of my 4am funk. The Reiki (or is it reiki?? I'm not sure what is appropriate...) was completely 'hand's off' -- but while she was working on my head, my hair was standing on end -- it was crazy. I could actually feel pressure on my leg at one point, but she never touched me. I'm not completely sure what it did for me, other than leaving more energized and out of the rabbit hole for the day. I'm hoping to go back next week as I get into treatment.
Tomorrow is chemo class. Strong potential for another funk. On days when I can get out, do errands, hang with the girls...I can almost pretend that life is back to the old normal, with the exception of being down a toe. But, when I head into the doctor's office, the reality of what I'm facing comes back and I have to muster up the focus to keep in the right frame of mind. That fighting spirit. It's there...but it likes to hide on doctor days.
I've been doing some canning again -- see above for pretending that things are back to normal. I consider it therapy as it keeps me on my feet. I made the mistake of tasting my raspberry jam today -- and after nearly 6 weeks of next to no sugar, it tasted overly sweet and kind of disgusting to me. I was never much of a jam person anyway -- I just like making it...but my reaction to it was a surprise. I might just be able to bake the girls some cookies and keep from trying any...sugar does not taste good anymore.
For tonight, I have gratitude for a week of nearly normal. Our new normal. I picked the girls up from school, helped them with homework, got them to follow-through with their chores (although, sadly, they still leave a trail of stuff behind them wherever they go) and have dinner as a family. We've had time to talk about what is going on, time to laugh and time to remind the girls that mom hasn't changed, much to their dismay. Tomorrow, we have a date night scheduled and will get to spend time with friends that we haven't seen in awhile -- and get to hang out with each other, just the two of us. This week has reminded me that life is good. No qualifications, no 'despite what we are facing'...it is just simply good. We have each other - and we are blessed.
Friday, September 27, 2013
Day 45
Ten days. I've been slacking.
It's been a very full ten days - and I finally have a chance to get my head around all we've been working through. I can't decide whether time is moving faster or slower...it depends on the moment. Crazy.
One of my sisters came out to visit last weekend. She was here to help with kids, help around the house, etc. What was interesting was that where she helped me the most had nothing to do with the kids or the house.
I've been working really hard to be at peace with my foot. I have a hard time looking at it and really accepting this new, mangled piece of my body. Chris, from the beginning, has been telling me that my foot looks great. He rubs it to make it feel better and he washed it when the bandages came off. This is just who my husband is...he sees past things that I tend to get hung up on. When my sister was here, she looked at my foot, held it, and even painted my toes (clear...but still, painted) - and she didn't blink an eye. She didn't flinch. She held my foot and looked at it - and she helped me to see it as she did. It's still just a foot. I am now able to touch and exam the amputation point -- and not cry. She gave me such a gift.
We flew out to Pittsburgh this past week to meet with Dr. Tarhini at UPMC. He and another colleague at UPMC have been the co-authors to many studies around interferon. From what we've been told, he is one that is on the leading edge around melanoma. The visit started out a bit rocky...not being helped by the fact that I tend to dread and expect the worst from any visit with an oncologist. We had an 8am appointment -- and I don't think we actually saw the doctor until after 9. Then, a nurse came in and asked us what we were hoping to get from this visit. Chris about walked out. This guy has been on the phone non-stop and has been sharing from the get-go what we were hoping to achieve. We just kept looking at each other like "we jumped on a plane for this??". Yikes. But then, we met the doctor. For the first time, someone gave us very direct, practical information about what we were facing -- and it was delivered in a way that actually gave us hope. Hope that we could get through the treatment and hope that it would work for us. He used the word "cure" -- twice. We recognize that a cure might be a stretch, as my risk will always be there -- but it is a word that hold hope. For the first time, at a doctors office, Chris teared up. We haven't been offered a lot of hope along this journey. We finally got the clarity that we were looking for. He also highly recommended our oncologist that we were tentatively planning on working with at home. We have been getting positive feedback about our doctor -- but this finally sealed the deal for us. His nurse also came in and gave us more practical, usable information about how to get through the treatment. Basic stuff -- like, do your shots at night so you can sleep through the worst of it. I like information that I can use.
We got home and the next day, met with Dr. Amatruda - our local oncologist. We went in with our minds made up to follow the high dose / 1 year regime with Interferon. Interestingly, Dr. A initially tried to push us back towards the PEG regime. I finally realized, which I should have done sooner, that every doctor is going to have different a philosophy - and different approach. There is no clear if you have x then do y with melanoma...although Interferon is the closest. That said, after talking more about the toxicity and challenges of high dose, he was supportive of our plan - and ready to get things rolling. I will start treatment on the 7th. I really wanted one last full week for Chris and I to have just our family at home, time to focus on our girls, time to see some friends, time to get a little bit stronger. One last week of something that felt close to normal.
One of the toxicity challenges with Interferon is depression -- especially the first four weeks on the high dose IVs. So, I've started on Zoloft to pre-empt the depression. Chris is in charge of letting the doctor know if I need my dose upped. I think it is a really low dose. I feel about the same...and it certainly didn't keep me from bursting into tears at my OB-GYN appointment this week.
We have gone through a ton of information over the last 45 days. We feel educated on what we are dealing with, educated on what our options are, educated on how to move forward. I am grateful for all of the friends and family that have been connecting us to the right people to talk to. It is amazing to discover all of the small, yet powerful, connections that our friends and family have -- and how quickly and easily they have offered up any information or connection that might help us get to the next person that can give us some answers. I am in awe of what they have helped us to achieve. We are truly blessed.
It's been a very full ten days - and I finally have a chance to get my head around all we've been working through. I can't decide whether time is moving faster or slower...it depends on the moment. Crazy.
One of my sisters came out to visit last weekend. She was here to help with kids, help around the house, etc. What was interesting was that where she helped me the most had nothing to do with the kids or the house.
I've been working really hard to be at peace with my foot. I have a hard time looking at it and really accepting this new, mangled piece of my body. Chris, from the beginning, has been telling me that my foot looks great. He rubs it to make it feel better and he washed it when the bandages came off. This is just who my husband is...he sees past things that I tend to get hung up on. When my sister was here, she looked at my foot, held it, and even painted my toes (clear...but still, painted) - and she didn't blink an eye. She didn't flinch. She held my foot and looked at it - and she helped me to see it as she did. It's still just a foot. I am now able to touch and exam the amputation point -- and not cry. She gave me such a gift.
We flew out to Pittsburgh this past week to meet with Dr. Tarhini at UPMC. He and another colleague at UPMC have been the co-authors to many studies around interferon. From what we've been told, he is one that is on the leading edge around melanoma. The visit started out a bit rocky...not being helped by the fact that I tend to dread and expect the worst from any visit with an oncologist. We had an 8am appointment -- and I don't think we actually saw the doctor until after 9. Then, a nurse came in and asked us what we were hoping to get from this visit. Chris about walked out. This guy has been on the phone non-stop and has been sharing from the get-go what we were hoping to achieve. We just kept looking at each other like "we jumped on a plane for this??". Yikes. But then, we met the doctor. For the first time, someone gave us very direct, practical information about what we were facing -- and it was delivered in a way that actually gave us hope. Hope that we could get through the treatment and hope that it would work for us. He used the word "cure" -- twice. We recognize that a cure might be a stretch, as my risk will always be there -- but it is a word that hold hope. For the first time, at a doctors office, Chris teared up. We haven't been offered a lot of hope along this journey. We finally got the clarity that we were looking for. He also highly recommended our oncologist that we were tentatively planning on working with at home. We have been getting positive feedback about our doctor -- but this finally sealed the deal for us. His nurse also came in and gave us more practical, usable information about how to get through the treatment. Basic stuff -- like, do your shots at night so you can sleep through the worst of it. I like information that I can use.
We got home and the next day, met with Dr. Amatruda - our local oncologist. We went in with our minds made up to follow the high dose / 1 year regime with Interferon. Interestingly, Dr. A initially tried to push us back towards the PEG regime. I finally realized, which I should have done sooner, that every doctor is going to have different a philosophy - and different approach. There is no clear if you have x then do y with melanoma...although Interferon is the closest. That said, after talking more about the toxicity and challenges of high dose, he was supportive of our plan - and ready to get things rolling. I will start treatment on the 7th. I really wanted one last full week for Chris and I to have just our family at home, time to focus on our girls, time to see some friends, time to get a little bit stronger. One last week of something that felt close to normal.
One of the toxicity challenges with Interferon is depression -- especially the first four weeks on the high dose IVs. So, I've started on Zoloft to pre-empt the depression. Chris is in charge of letting the doctor know if I need my dose upped. I think it is a really low dose. I feel about the same...and it certainly didn't keep me from bursting into tears at my OB-GYN appointment this week.
We have gone through a ton of information over the last 45 days. We feel educated on what we are dealing with, educated on what our options are, educated on how to move forward. I am grateful for all of the friends and family that have been connecting us to the right people to talk to. It is amazing to discover all of the small, yet powerful, connections that our friends and family have -- and how quickly and easily they have offered up any information or connection that might help us get to the next person that can give us some answers. I am in awe of what they have helped us to achieve. We are truly blessed.
Tuesday, September 17, 2013
Day 35
I've always been big on managing expectations. It could be from years of working in a big corporate culture - and managing expectations can be a career builder or ender...or it could be just how I'm wired. It's probably how I'm wired - as I'm more frustrated than I should be with doctors that aren't managing my expectations. If I know, I can deal with it. If I get surprised -- it really throws me for a loop.
Back when we planned this amputation, I was told I'd be up and walking in a couple of weeks -- and it would just be an insert in my shoe and I'd be 'good to go'. Well...I'm walking in about four weeks. I'll take it. I'm thankful to be up and moving. But, as I learned today, it is a bit more than 'just an insert in my shoe' -- and no one was clear on what that shoe would be. Okay...I'm realizing that I'm focusing on the wrong things here...but, my single pair of shoes, for the next uncertain amount of months...is awful. Awful. I was dealing with saying goodbye to my shoes. My really nice shoes. Really nice. I spent more money than I should have, nice. I was okay with it. Until today...when I looked at the big, black, clunky, men's shoes that I have to wear for the undefined future. I'm still glad that the toe is gone...but I'm not happy about the shoes. I shall be living in very long, black pants for the same undefined future. If you can't get rid of them, hide them as best you can.
Chris climbed a mountain today -- he got us into University of Pittsburgh. Today has been a scramble to lock down flights, and figure out coverage for the girls. I'm trying not to get my hopes up that this will be the answer to what we are looking for....but, I am hopeful. It becomes overwhelming.
I heard from a friend of a friend that has hit her five-year cancer-free mark. I will focus on this kind of hope. What rallied me was her focus on remaining positive and eating clean. Two things that I can do. I pray that I have similar success that she has shown to date.
Today, I am grateful for my in-laws. They are here. They offer Chris a different kind of support that I am thankful that he has right now. I can tell that he is exhausted. My mother in law is the perfect mix of empathy and 'stay tough' love -- she is wonderful. She has been riding shot-gun with me as I get comfortable driving again. She plays with the girls. She made soup. My mom made soup. I love that our moms make us soup. The ultimate comfort food. Our parents have never stopped parenting -- and when we need them most, they are there. I pray that we are able to do the same for our girls when they are grown.
Back when we planned this amputation, I was told I'd be up and walking in a couple of weeks -- and it would just be an insert in my shoe and I'd be 'good to go'. Well...I'm walking in about four weeks. I'll take it. I'm thankful to be up and moving. But, as I learned today, it is a bit more than 'just an insert in my shoe' -- and no one was clear on what that shoe would be. Okay...I'm realizing that I'm focusing on the wrong things here...but, my single pair of shoes, for the next uncertain amount of months...is awful. Awful. I was dealing with saying goodbye to my shoes. My really nice shoes. Really nice. I spent more money than I should have, nice. I was okay with it. Until today...when I looked at the big, black, clunky, men's shoes that I have to wear for the undefined future. I'm still glad that the toe is gone...but I'm not happy about the shoes. I shall be living in very long, black pants for the same undefined future. If you can't get rid of them, hide them as best you can.
Chris climbed a mountain today -- he got us into University of Pittsburgh. Today has been a scramble to lock down flights, and figure out coverage for the girls. I'm trying not to get my hopes up that this will be the answer to what we are looking for....but, I am hopeful. It becomes overwhelming.
I heard from a friend of a friend that has hit her five-year cancer-free mark. I will focus on this kind of hope. What rallied me was her focus on remaining positive and eating clean. Two things that I can do. I pray that I have similar success that she has shown to date.
Today, I am grateful for my in-laws. They are here. They offer Chris a different kind of support that I am thankful that he has right now. I can tell that he is exhausted. My mother in law is the perfect mix of empathy and 'stay tough' love -- she is wonderful. She has been riding shot-gun with me as I get comfortable driving again. She plays with the girls. She made soup. My mom made soup. I love that our moms make us soup. The ultimate comfort food. Our parents have never stopped parenting -- and when we need them most, they are there. I pray that we are able to do the same for our girls when they are grown.
Sunday, September 15, 2013
Day 33
Made it to church today, for the first time in a couple of months. Church is always a bit of an emotional journey for me, even on the best of days. The music and the connection of the community always seems to resonate with me and help me to feel a sense of purpose again. Today's message was about finding your humanity in times of weakness -- and finding the blessings in your tears and pain. Yep. Let's just say it resonated more than usual today.
When I quit my job, I had this vision of being 'Super Mom' -- volunteering at school, getting more involved in church, orchestrating play dates where all the kids would always want to come to our house, cooking everything from scratch, doing it ALL, never needing to ask for help. Instead, I find myself in a position of needing to ask for help, of realizing that not only can I NOT do it all -- but there are many things that used to be easy, that are now difficult. That it will take a community of friends and family to help raise and protect and care for not only my children, but Chris and me. Keeping our fears and needs private and only showing the "we can do it all" side does not actually make us strong. I'm finding that it takes more courage and strength to say that I need help. It's hard and it's uncomfortable.....but I'm working really hard to find my way.
Mom met with Pastor Doug this past week. Another piece of asking for help. Completely out of my comfort zone. My spirituality has always been very internal - very private. Asking for help in prayer, praying with someone. Not comfortable....and so very needed right now. I'll be calling Pastor Doug this week and will meet with him. So -- as we heard this morning, there are blessings in the pain, gifts in the vulnerability, courage when you are in need.
In other news, M lost her first tooth Friday night. A lot of excitement in writing a note to the toothfairy -- and then actually getting the tooth out. I'm not convinced that the tooth was ready to go...but out it came. I love these moments. I am grateful for them. This is what life is about. The belief in the toothfairy and hoping for a little bit of pixie dust along with some shiny quarters. Sisters plotting together to make it all happen. This is where I find joy.
When I quit my job, I had this vision of being 'Super Mom' -- volunteering at school, getting more involved in church, orchestrating play dates where all the kids would always want to come to our house, cooking everything from scratch, doing it ALL, never needing to ask for help. Instead, I find myself in a position of needing to ask for help, of realizing that not only can I NOT do it all -- but there are many things that used to be easy, that are now difficult. That it will take a community of friends and family to help raise and protect and care for not only my children, but Chris and me. Keeping our fears and needs private and only showing the "we can do it all" side does not actually make us strong. I'm finding that it takes more courage and strength to say that I need help. It's hard and it's uncomfortable.....but I'm working really hard to find my way.
Mom met with Pastor Doug this past week. Another piece of asking for help. Completely out of my comfort zone. My spirituality has always been very internal - very private. Asking for help in prayer, praying with someone. Not comfortable....and so very needed right now. I'll be calling Pastor Doug this week and will meet with him. So -- as we heard this morning, there are blessings in the pain, gifts in the vulnerability, courage when you are in need.
In other news, M lost her first tooth Friday night. A lot of excitement in writing a note to the toothfairy -- and then actually getting the tooth out. I'm not convinced that the tooth was ready to go...but out it came. I love these moments. I am grateful for them. This is what life is about. The belief in the toothfairy and hoping for a little bit of pixie dust along with some shiny quarters. Sisters plotting together to make it all happen. This is where I find joy.
Thursday, September 12, 2013
Day 30
I truly believe that I am on a journey.... a spiritual one, an emotional one, a health one, and a journey of finding a simpler way to live. Frankly, as I was prepping to quit my job -- these were all things that I wanted to achieve: more time to focus on my family, my faith, my health. I would have preferred not to go about it hand in hand with battling cancer...but, perhaps, it is through this battle that I will discover a more focused way to live. Live being the operative word.
The stitches came out today. "You'll only feel a pull". Yep -- guess who was not appropriately managing my expectations again?? I nearly ripped a whole in Chris' arm. Ouch. I'll get fitted for my prosthetic next week and can start figuring out what shoes I can wear. My thrill of the day was returning the knee caddie...my primary mode of operation for over two months. As much as the girls loved playing with it, they both cheered when they heard it was gone. I think they are ready for mom to walk too.
I'm reading cookbooks that explore vegetarian, vegan and cancer-fighting. I'm intrigued and a little excited. A new adventure. I'm realizing that not only do I need this for myself, but I have an opportunity to guide the girls' tastebuds so that they grow up loving healthy, antioxidant, cancer-fighting foods. They will be high-risk for cancer...so I need to get them on the health train now.
Today, I am grateful for our dog, O. He is a needy little dude, but he has been a comfort, a couch-warmer and a pal. He has managed to step on my node biopsy incision more times than I can count - but I still love him.
The stitches came out today. "You'll only feel a pull". Yep -- guess who was not appropriately managing my expectations again?? I nearly ripped a whole in Chris' arm. Ouch. I'll get fitted for my prosthetic next week and can start figuring out what shoes I can wear. My thrill of the day was returning the knee caddie...my primary mode of operation for over two months. As much as the girls loved playing with it, they both cheered when they heard it was gone. I think they are ready for mom to walk too.
I'm reading cookbooks that explore vegetarian, vegan and cancer-fighting. I'm intrigued and a little excited. A new adventure. I'm realizing that not only do I need this for myself, but I have an opportunity to guide the girls' tastebuds so that they grow up loving healthy, antioxidant, cancer-fighting foods. They will be high-risk for cancer...so I need to get them on the health train now.
Today, I am grateful for our dog, O. He is a needy little dude, but he has been a comfort, a couch-warmer and a pal. He has managed to step on my node biopsy incision more times than I can count - but I still love him.
Monday, September 9, 2013
Day 27
It was a long day on the front line. In my mind, or maybe it was just my hope, we'd have a meeting with a doctor who would say "I'm in this with you -- I will get you through this". It hasn't happened yet. We've gotten more - "hey, I'm happy to treat you if you want...but you can go wherever". It leaves me feeling that, at least to these doctors, I am not valued. I'm not worth fighting for and helping...which just pisses me off. I realize that we are going to have to drive this, every step of the way -- but I KNOW that there are doctors out there that at least demonstrate some sort of partnership. So far, my dermatologist has been the only voice of caring so far. So that sucks. That - and the feedback that the PEG Interferon treatment would actually be for five years, not 18 months as we were told by the last oncologist. Which guy is right?
Tonight, I am frustrated. Frustrated and scared and sad. I need to get my fighting spirit back -- but it drained out of me today. I need more time.
So...because I'm just tapped, I'm just going to focus on what I am grateful for...maybe it'll get me out of this funk.
I am grateful for my little girls. On a dark day, they can make me smile. W walked over and tapped my remaining four toes -- just letting me know that it was all okay. M snuggled in to do a dot-to-dot and was full of kisses. M dialed through a catalog that came in the mail and circled everything that she wants. Clearly she is preparing for winter, she circled four different coats. W read aloud three chapters from the Little House book that we are working on. I love the sound of her voice and how she tries to do different voices for different characters. I'm grateful that they continue to find normalcy despite the swirl that we are managing through. I pray that they continue to feel like their world is simple. Normal.
Tonight, I am frustrated. Frustrated and scared and sad. I need to get my fighting spirit back -- but it drained out of me today. I need more time.
So...because I'm just tapped, I'm just going to focus on what I am grateful for...maybe it'll get me out of this funk.
I am grateful for my little girls. On a dark day, they can make me smile. W walked over and tapped my remaining four toes -- just letting me know that it was all okay. M snuggled in to do a dot-to-dot and was full of kisses. M dialed through a catalog that came in the mail and circled everything that she wants. Clearly she is preparing for winter, she circled four different coats. W read aloud three chapters from the Little House book that we are working on. I love the sound of her voice and how she tries to do different voices for different characters. I'm grateful that they continue to find normalcy despite the swirl that we are managing through. I pray that they continue to feel like their world is simple. Normal.
Thursday, September 5, 2013
Day 23
The process of letting people know that you have a disease like cancer is an interesting process. Do you tell them? Do you sidestep it? Do you let them hear through others? It's weird. Especially if you tend to be a generally private person (as I blog in a public space that anyone can get to...oh how quickly things change). While letting family know is one thing, the whole process in letting friends, acquaintances, old work connections and don't even get me started about Facebook friends know -- well, it can be awkward. I have dear friends that I immediately turned to - and they have been a core part of my support structure over the last 23 days. But, I have other friends that I care about, but haven't talked to in a long time -- and calling them up to say 'hey, I'm dealing with cancer now' seems odd. When they do hear, however, I feel awful for not calling them right away. I also had to let our financial advisor know and need to tell my daughters' pediatrician, and Chris told our insurance guy. You feel like you are dropping this little grenade - and then waiting to see if there is aftermath. I received an email from a work friend who heard from an agency person that I don't even know. Seriously? It's weird. Again - private person. So knowing that I've become the subject matter in conversations of people that I don't even know...well, frankly, in the spirit of focusing on what really matters -- I guess it really doesn't matter. I've hit this point where I'm appreciative of the prayers, the positive thoughts, the good mojo being sent my way...and it seems like quantity isn't a bad thing when it comes to prayers and good mojo. Frankly, putting it out there and saying (or typing) the words cancer, amputation, and malignant melanoma takes the power out of the words. I refuse to whisper the word cancer. It sucks - and I'm comfortable saying that in as loud of voice as possible. Twenty-three days ago, my life changed in about 15 seconds of a phone call. It's not going to help me to keep it to myself....so there you go.
Today, I was supposed to get the stitches out of my foot. It didn't happen. I think that my doctor could have managed my expectations a bit better -- and instead of saying I'd be walking a couple of weeks after surgery, he could have said 'a few'. I'm very literal. He didn't seem surprised that it wasn't time to take out the stitches -- but I was. Also, there is something bubbling with my heel. They think it is plantar faciniitis -- but I'm off to get an MRI to check anyway. I am quickly understanding how each time I gear up for another scan, the panic starts to bubble. Is my life going to change again? I suspect that I will feel this way each and every time.
The doctor also shared that they had to re-do the radioactive tracer shot into my toe in the operating room. Both Chris and I were pretty ticked. Seriously?? I had to go through getting TWO SHOTS into my bad toe, pre-surgery, and they STILL did it again? I'm done with Park Nicollet. We know it isn't the place for our long term oncology journey -- and this last little tidbit left me flabbergasted at how casually this shot was treated.
Leaving all of that behind and focusing on what I am grateful for (clearly, not the radioactive shot guy) -- I am grateful for my friend, Heidi. She is an amazing care giver. She not only goes beyond the call of duty to take care of her friends - and I am grateful that I am one of them. She has brought food, orchestrated meal train and now has orchestrated house cleaning for us. As Chris said last night -- "there are so many people that want to help and do good things...they just need a General to get them organized. Heidi is a General". He is so right. But more than that, Heidi is an empathetic, giving, funny, amazing woman. She is also just an amazing friend. As my sisters will tell anyone, my history in choosing friends has occasionally been suspect. I was just saving up for a friend like Heidi.
Today, I was supposed to get the stitches out of my foot. It didn't happen. I think that my doctor could have managed my expectations a bit better -- and instead of saying I'd be walking a couple of weeks after surgery, he could have said 'a few'. I'm very literal. He didn't seem surprised that it wasn't time to take out the stitches -- but I was. Also, there is something bubbling with my heel. They think it is plantar faciniitis -- but I'm off to get an MRI to check anyway. I am quickly understanding how each time I gear up for another scan, the panic starts to bubble. Is my life going to change again? I suspect that I will feel this way each and every time.
The doctor also shared that they had to re-do the radioactive tracer shot into my toe in the operating room. Both Chris and I were pretty ticked. Seriously?? I had to go through getting TWO SHOTS into my bad toe, pre-surgery, and they STILL did it again? I'm done with Park Nicollet. We know it isn't the place for our long term oncology journey -- and this last little tidbit left me flabbergasted at how casually this shot was treated.
Leaving all of that behind and focusing on what I am grateful for (clearly, not the radioactive shot guy) -- I am grateful for my friend, Heidi. She is an amazing care giver. She not only goes beyond the call of duty to take care of her friends - and I am grateful that I am one of them. She has brought food, orchestrated meal train and now has orchestrated house cleaning for us. As Chris said last night -- "there are so many people that want to help and do good things...they just need a General to get them organized. Heidi is a General". He is so right. But more than that, Heidi is an empathetic, giving, funny, amazing woman. She is also just an amazing friend. As my sisters will tell anyone, my history in choosing friends has occasionally been suspect. I was just saving up for a friend like Heidi.
Tuesday, September 3, 2013
Day 21
First day of school. Let's just be honest -- we were ALL ready for school to start. I have guilt about the summer that my girls had versus the one that we had planned. However, I'm trying to recognize that it was all beyond my scope of control and feeling guilty is not a worthwhile way to spend my time. The girls are tired, their summer was wonky, and I know they sense the stress in the house. I pray that it gets better.
In one of my cancer books, they write about the importance of gratitude and the role that it can play in staying healthy, surviving. So - as a part of this journaling process, I'm going to write about things for which I am grateful.
Today...actually, every day, I am grateful for my family and the roles that they are all taking on throughout this battle. My mom and dad -- they are taking care of me, taking care of my girls, aiding my husband. They are keeping our family in full operation as Chris and I sway back and forth between being engaged in family and being engaged in cancer. They are cheering me on and joining my husband in ganging up on me when I would rather curl up in a ball and be sad. It's a good ganging up. I'm grateful for it. My sisters and their husbands -- they are digging into research, getting their arms around my diagnosis and playing it back in a way that I can understand. They talk me off the ledge when I am wanting to focus on "the numbers". They call and make me laugh. I am grateful that they are my sisters and that they are always in my corner. I am grateful that they married men that are so engaged and care about how to get us through this battle. My little girls - they are my gifts from God. Even when they are tired and grumpy, as demonstrated by Miss M today, I am grateful for how they wake up each day, full of determination, spirit and joy. Finally, I am grateful for my husband. He pushes and prods and holds my hand. He won't ever give up. Period. I'm grateful that he teases me as I crutch up the stairs, with our ten year old dog lapping me. I'm grateful for his patience, and frankly, his lack of patience. It works. I may not be grateful of it in the moment -- but I can look back and see where the pushiness has paid off. I know that it will take a village to get me to the other side of this -- and I'm grateful for the one that is coming to life around me.
In one of my cancer books, they write about the importance of gratitude and the role that it can play in staying healthy, surviving. So - as a part of this journaling process, I'm going to write about things for which I am grateful.
Today...actually, every day, I am grateful for my family and the roles that they are all taking on throughout this battle. My mom and dad -- they are taking care of me, taking care of my girls, aiding my husband. They are keeping our family in full operation as Chris and I sway back and forth between being engaged in family and being engaged in cancer. They are cheering me on and joining my husband in ganging up on me when I would rather curl up in a ball and be sad. It's a good ganging up. I'm grateful for it. My sisters and their husbands -- they are digging into research, getting their arms around my diagnosis and playing it back in a way that I can understand. They talk me off the ledge when I am wanting to focus on "the numbers". They call and make me laugh. I am grateful that they are my sisters and that they are always in my corner. I am grateful that they married men that are so engaged and care about how to get us through this battle. My little girls - they are my gifts from God. Even when they are tired and grumpy, as demonstrated by Miss M today, I am grateful for how they wake up each day, full of determination, spirit and joy. Finally, I am grateful for my husband. He pushes and prods and holds my hand. He won't ever give up. Period. I'm grateful that he teases me as I crutch up the stairs, with our ten year old dog lapping me. I'm grateful for his patience, and frankly, his lack of patience. It works. I may not be grateful of it in the moment -- but I can look back and see where the pushiness has paid off. I know that it will take a village to get me to the other side of this -- and I'm grateful for the one that is coming to life around me.
Saturday, August 31, 2013
Day 18
An outing was orchestrated today -- primarily by mom and Chris. I need to get out of the house for something other than a doctor's appointment. They are right. My tendency is to sit in my chair and try not to dwell on the what ifs of the future.
We went out to lunch - the girls, mom, Chris, me and my scooter. It was nice to be out and about. The manager of the restaurant stopped by to see how our lunch was -- and started questioning what happened to my foot. I tried to deflect - but he kept asking...so I told him. He never made eye contact with me again. Sorry dude, I tried to keep it easy for you.
Friends have started to visit - and I'm finding that the company is going a long ways in buoying my spirits. I really have been in a bit of isolation for awhile, and I miss hearing about the rest of the world. I was nervous about seeing folks - but now I'm eager for next week's visitors.
Not going down the rabbit hole is going to be my biggest challenge. The fear is lurking. The fear that I've wasted time leading up to now. The fear that I'll waste the time I might have left. The fear that it won't be much time. The fear and realization that I'm just not in control. Tough for a control freak. Yes, there are things that I can do - and I plan on doing everything that I can. But most of this -- it is with God. I flashed back to my day in the brain MRI and the brief moment of the song from my childhood and the overwhelming feeling that God was with me. I need to remember that more often. He is with me. I can't control this -- and I don't need to. It isn't mine to control. My job is to accept that - and to focus on the gift and hope of every day. I know this -- but it is doing it, every day that will be my challenge.
We went out to lunch - the girls, mom, Chris, me and my scooter. It was nice to be out and about. The manager of the restaurant stopped by to see how our lunch was -- and started questioning what happened to my foot. I tried to deflect - but he kept asking...so I told him. He never made eye contact with me again. Sorry dude, I tried to keep it easy for you.
Friends have started to visit - and I'm finding that the company is going a long ways in buoying my spirits. I really have been in a bit of isolation for awhile, and I miss hearing about the rest of the world. I was nervous about seeing folks - but now I'm eager for next week's visitors.
Not going down the rabbit hole is going to be my biggest challenge. The fear is lurking. The fear that I've wasted time leading up to now. The fear that I'll waste the time I might have left. The fear that it won't be much time. The fear and realization that I'm just not in control. Tough for a control freak. Yes, there are things that I can do - and I plan on doing everything that I can. But most of this -- it is with God. I flashed back to my day in the brain MRI and the brief moment of the song from my childhood and the overwhelming feeling that God was with me. I need to remember that more often. He is with me. I can't control this -- and I don't need to. It isn't mine to control. My job is to accept that - and to focus on the gift and hope of every day. I know this -- but it is doing it, every day that will be my challenge.
Thursday, August 29, 2013
Day 16
50/50 shot of surviving to 5 years and 30% shot of surviving to 10 years. I know that Chris keeps reminding me that we can't focus on the numbers -- and that these numbers come from data that goes back nearly 50 years AND that a lot has changed with melanoma in the last 3-5 years, which is changing the curve...but, how does that not punch you in the gut? 10 years - W is 18. My baby will be 16. That is when we are supposed to be gearing up for college, and worrying that our little power bundle of energy will be getting behind the wheel of a car (oh my).
These are not my numbers - and they are not going to be my numbers. Considering that I managed to swing into the 1% club of getting this in the first place, I'll just keep playing in the narrow numbers -- as I will be in that 30%. But I'm scared...just really scared.
We talked treatment options today -- and frankly, it sounds like we should almost assume that this is going to come back. The goal is to delay, as more treatment options open up every year. I'm trying to look at that as a positive -- but, I know that this battle isn't anywhere near done. There is another shoe that will most likely drop...we just don't know when. My job, which will be a tough one for me, is to focus on each day and not focus on it with fear. This isn't my strong suit. I'm a planner...one might say a "worse case scenario" planner. Time to learn how to live fully in the present.
We'll head to see at least one more oncologist and confirm opinions on the treatment option that was recommended today. My gut tells me that we won't hear much that is different -- but I want to be with someone that will be hard core on surveillance. If this is probably going to come back - I want it caught FAST.
I started reading some fighting cancer in the kitchen cookbooks yesterday. I need to do something to feel like I have an active hand in fighting back...and cooking is something that I know how to do. Although, right now - I can't really do anything. But, mom whipped up a tomato soup that was in one book -- and wow. I'm hopeful that food combat is something that both Chris and I can embrace and feel like we have some empowerment in dealing with this beast.
A couple of weeks back, Chris and I rewatched the Band of Brothers episodes. We realized today how much fighting cancer is really like fighting a war. We made it off of the beach -- it didn't spread, we're in the fight. Some days, like yesterday, we're not on the front line...we're resting, we're gearing up, we're getting the lay of the land. But today -- it is another day on the front lines. We're immersed in it and we come home exhausted and fearful. I'm assuming that treatment will be a bit like Bastogne. Just trying to survive in my foxhole.
These are not my numbers - and they are not going to be my numbers. Considering that I managed to swing into the 1% club of getting this in the first place, I'll just keep playing in the narrow numbers -- as I will be in that 30%. But I'm scared...just really scared.
We talked treatment options today -- and frankly, it sounds like we should almost assume that this is going to come back. The goal is to delay, as more treatment options open up every year. I'm trying to look at that as a positive -- but, I know that this battle isn't anywhere near done. There is another shoe that will most likely drop...we just don't know when. My job, which will be a tough one for me, is to focus on each day and not focus on it with fear. This isn't my strong suit. I'm a planner...one might say a "worse case scenario" planner. Time to learn how to live fully in the present.
We'll head to see at least one more oncologist and confirm opinions on the treatment option that was recommended today. My gut tells me that we won't hear much that is different -- but I want to be with someone that will be hard core on surveillance. If this is probably going to come back - I want it caught FAST.
I started reading some fighting cancer in the kitchen cookbooks yesterday. I need to do something to feel like I have an active hand in fighting back...and cooking is something that I know how to do. Although, right now - I can't really do anything. But, mom whipped up a tomato soup that was in one book -- and wow. I'm hopeful that food combat is something that both Chris and I can embrace and feel like we have some empowerment in dealing with this beast.
A couple of weeks back, Chris and I rewatched the Band of Brothers episodes. We realized today how much fighting cancer is really like fighting a war. We made it off of the beach -- it didn't spread, we're in the fight. Some days, like yesterday, we're not on the front line...we're resting, we're gearing up, we're getting the lay of the land. But today -- it is another day on the front lines. We're immersed in it and we come home exhausted and fearful. I'm assuming that treatment will be a bit like Bastogne. Just trying to survive in my foxhole.
Wednesday, August 28, 2013
Day 15
I was able to take shower today. Thrilling and terrifying at the same time. I had to take the stairs, my first time since surgery. Ok - so I crawled. I scooted. I made it. We realized quickly that the funky shower protector thing, to keep my bandages dry, was not going to fit over my boot. My boot gives me confidence. I know that if I absolutely have to put my heel down, my non-toe will be protected. No boot means no net. We also have a bridge into the shower -- so a step up and over...onto a slick tile floor, with crutches, with no boot. I nearly bailed.
It is interesting to me, the wonky things about myself, that I am slowly letting go of...mostly of necessity. But, as I let go, I wonder why it was something that I was hanging on to. For example, I love my husband. He is awesome -- in more ways than one. He will tell me over and over that he loves, no matter how I look or feel. While I appreciate that, when I'm feeling crappy about my weight, or not wanting to put on anything more glamorous than a baggy, stained t-shirt (did I mention this is an opportunity area?) - I don't really believe him. I want to -- but seriously? I have a pretty good idea what my butt looks like -- and it isn't pretty. So...in my mind, by keeping things covered, taking a stance that "I'll never pee in front of you -- it'll kill the mystery" and walking backwards into the shower if he is in the bathroom...I'm thinking that he has no idea what my butt is looking like, therefore, of course he still loves me anyway. Who am I kidding? He was there when our girls were born...and I mean, RIGHT THERE. If there was any mystery left -- it got shot to the moon the day that W was born.
Fast forward to this surgery. Chris held my hand as they injected radiation into my toe, pre-surgery, as I was sobbing and my ass was hanging out of my surgical gown. He got me dressed in the hospital as I was loopy on drugs and doing everything not to let my foot hurt. He held my foot up as I went to the bathroom the first day after surgery, helping me through every second of the process. And today, he held me in the shower, washed my hair and got all of the weird sticky stuff off of my body that was left over from surgery. Through it all, he reminded me, not only with his words but with all of his actions, that he loves me -- no matter what I weigh, or what my hair looks like, or whether or not I've managed to put on make-up (and I haven't). He is a gift. I am blessed -- we both are.
It is interesting to me, the wonky things about myself, that I am slowly letting go of...mostly of necessity. But, as I let go, I wonder why it was something that I was hanging on to. For example, I love my husband. He is awesome -- in more ways than one. He will tell me over and over that he loves, no matter how I look or feel. While I appreciate that, when I'm feeling crappy about my weight, or not wanting to put on anything more glamorous than a baggy, stained t-shirt (did I mention this is an opportunity area?) - I don't really believe him. I want to -- but seriously? I have a pretty good idea what my butt looks like -- and it isn't pretty. So...in my mind, by keeping things covered, taking a stance that "I'll never pee in front of you -- it'll kill the mystery" and walking backwards into the shower if he is in the bathroom...I'm thinking that he has no idea what my butt is looking like, therefore, of course he still loves me anyway. Who am I kidding? He was there when our girls were born...and I mean, RIGHT THERE. If there was any mystery left -- it got shot to the moon the day that W was born.
Fast forward to this surgery. Chris held my hand as they injected radiation into my toe, pre-surgery, as I was sobbing and my ass was hanging out of my surgical gown. He got me dressed in the hospital as I was loopy on drugs and doing everything not to let my foot hurt. He held my foot up as I went to the bathroom the first day after surgery, helping me through every second of the process. And today, he held me in the shower, washed my hair and got all of the weird sticky stuff off of my body that was left over from surgery. Through it all, he reminded me, not only with his words but with all of his actions, that he loves me -- no matter what I weigh, or what my hair looks like, or whether or not I've managed to put on make-up (and I haven't). He is a gift. I am blessed -- we both are.
Monday, August 26, 2013
Day 13
Oh my sweet little ladies....if you thought I was nutty about you wearing sunscreen and hats before...you haven't seen nothing yet...wowza. Nothing like hearing "your girls are now high risk because of you" to really get you kicked into high battle mode. The yoga that I have thought of as a"isn't it nice that they are into it" activity, is now a non-negotiable tool for long term holistic health. Much like my obsessiveness for canning, my intent is to dial into every tool that we can find and leverage, to give all of us the best odds in fighting melanoma long term. New normal people. Sweet little family...get ready.
They changed the bandage on my foot today. While I wasn't brave enough to look at the amputation site (Chris was -- he says it looks good...my husband rocks) -- I did look at the downsized bandage that had my four lonely toes poking out. I started laughing. Hysterically. Tears running down my face. Laughing. The nurse asked Chris if I was ok. My foot looks weird. Freaky. And I haven't even seen the actual foot. I've got a road in front of me on this one. I'm thankful the toe is gone. But wow. It got real today.
I realized, after the appointment, while I was waiting for Chris -- that I've never considered myself to be an overly vain person. I mean, clearly, as regularly as I hang out in sweats and tshirts with stains and holes...I'm not that worried about my appearance... (an opportunity area for me...) -- so, in my mind, I had gotten myself to a place where this amputation wasn't really bothering me. Probably not that realistic. It does bother me. But, I also realized that, with a good shoe...a boot even, the average joe won't know that my toe is gone. People won't be staring at me as I walk around. It made my think of my grandpa, who lost half of his face to skin cancer. As a kid, it never bothered me -- it was just what grandpa looked like. But, I never thought about how grandpa felt about it. His kids were grown, he lived out on the farm -- perhaps it was easier to be pragmatic about it? I don't know. I thought about if I'm in the same situation and I lose part of my face. To stay alive -- yep, cut off what you need to. But, my fear in this always goes back to the girls. My toe being gone -- it's a little scary. We talk about it. I'm fairly certain that all of M's new classmates will know within the first week of school that her mom doesn't have a toe. But beneath the fear and the talk about how weird it is -- I'm still their mom. I still look like their mom. Nothing has changed. I realized that my fear is that something changes as they are going through the next decade plus -- the time in their lives when they need their mom, the opinion of their friends will have an impact - and having something weird about their mom (e.g. not having a nose) might leave them grappling with more difficulty than the average teenage girl...and that punched me in the gut. If that is the bridge that we cross, then so be it...but for today, I will continue to be grateful that my toe is gone -- and that it is only a toe.
They changed the bandage on my foot today. While I wasn't brave enough to look at the amputation site (Chris was -- he says it looks good...my husband rocks) -- I did look at the downsized bandage that had my four lonely toes poking out. I started laughing. Hysterically. Tears running down my face. Laughing. The nurse asked Chris if I was ok. My foot looks weird. Freaky. And I haven't even seen the actual foot. I've got a road in front of me on this one. I'm thankful the toe is gone. But wow. It got real today.
I realized, after the appointment, while I was waiting for Chris -- that I've never considered myself to be an overly vain person. I mean, clearly, as regularly as I hang out in sweats and tshirts with stains and holes...I'm not that worried about my appearance... (an opportunity area for me...) -- so, in my mind, I had gotten myself to a place where this amputation wasn't really bothering me. Probably not that realistic. It does bother me. But, I also realized that, with a good shoe...a boot even, the average joe won't know that my toe is gone. People won't be staring at me as I walk around. It made my think of my grandpa, who lost half of his face to skin cancer. As a kid, it never bothered me -- it was just what grandpa looked like. But, I never thought about how grandpa felt about it. His kids were grown, he lived out on the farm -- perhaps it was easier to be pragmatic about it? I don't know. I thought about if I'm in the same situation and I lose part of my face. To stay alive -- yep, cut off what you need to. But, my fear in this always goes back to the girls. My toe being gone -- it's a little scary. We talk about it. I'm fairly certain that all of M's new classmates will know within the first week of school that her mom doesn't have a toe. But beneath the fear and the talk about how weird it is -- I'm still their mom. I still look like their mom. Nothing has changed. I realized that my fear is that something changes as they are going through the next decade plus -- the time in their lives when they need their mom, the opinion of their friends will have an impact - and having something weird about their mom (e.g. not having a nose) might leave them grappling with more difficulty than the average teenage girl...and that punched me in the gut. If that is the bridge that we cross, then so be it...but for today, I will continue to be grateful that my toe is gone -- and that it is only a toe.
Saturday, August 24, 2013
Day 11
W has discovered this video series at the library called FairyTale Theater. 1970s versions of fairy tales with big names before they were big names. These little movielets would fall into the 'so bad it's good' category. Clumsy productions with stilted acting. Today was Beauty and the Beast starring Susan Sarandon. I'm fairly certain that she isn't claiming this on IMDB. What a way to pass the time.
I've finally picked up my knitting again. I started up a couple of weeks ago - as I've been off my feet for well over a month now. I think I'd be handling time in the chair a little bit better right now if I hadn't spent the last month sitting. Now, I'm just twitchy. I'm eager to walk, to cook, to do laundry. I really miss doing the basics. The ordinary days. Clearly, like most people, I didn't appreciate the ordinary days the way that I should have. I don't think anyone really does. That is one of my goals in the new normal -- pretty straightforward -- appreciate each ordinary day that we have.
Chris is twitchy too. He has spent every day of the last 10 days running down contacts, getting test results delivered, getting appointments set up, taking care of me. We did feature him in our own movie this morning as Fredrico, the dog washer. Take a basic chore (giving the dog a bath), break out a camera to film it and it becomes a festive 'we're making a movie' project -- thanks to Aunt Linda's fabulous cinematography. Let's just call it -- we're all stir crazy. It's been a wonky summer. It will be good when school starts for the girls. We can only make so many 8 minute videos of bathing the dog.
I've finally picked up my knitting again. I started up a couple of weeks ago - as I've been off my feet for well over a month now. I think I'd be handling time in the chair a little bit better right now if I hadn't spent the last month sitting. Now, I'm just twitchy. I'm eager to walk, to cook, to do laundry. I really miss doing the basics. The ordinary days. Clearly, like most people, I didn't appreciate the ordinary days the way that I should have. I don't think anyone really does. That is one of my goals in the new normal -- pretty straightforward -- appreciate each ordinary day that we have.
Chris is twitchy too. He has spent every day of the last 10 days running down contacts, getting test results delivered, getting appointments set up, taking care of me. We did feature him in our own movie this morning as Fredrico, the dog washer. Take a basic chore (giving the dog a bath), break out a camera to film it and it becomes a festive 'we're making a movie' project -- thanks to Aunt Linda's fabulous cinematography. Let's just call it -- we're all stir crazy. It's been a wonky summer. It will be good when school starts for the girls. We can only make so many 8 minute videos of bathing the dog.
Friday, August 23, 2013
Day 10
Day 9 was pretty straight forward. I no longer have ten toes. While I still have to face the visible reality -- I am thankful the toe is gone.
I continue to be in awe of the kindness of strangers. The care that I received from the nurses at Park Nicollet was wonderful. Lovely, caring women with empathy, yet they were fabulously pragmatic.
The most distressing part of yesterday was the shock of having an injection into my toe before surgery. I knew that they need to put a radioactive tracer in me for the node biopsy, but I was informed, by a number of folks, that it would be into my iv line. That was not the case. It was an injection into my toe, just below the open wound. I was hysterical...and not the funny kind. To make matters worse, the first one didn't work -- so it was done twice. The pain from that injection is now my phantom pain in my non-existent toe...so I get to keep feeling it. Lovely.
But -- it is done. I am home. I can move forward.
Today, we got the call that my node biopsy was negative. The cancer did not spread. I think that this was when the full emotional impact hit Chris. We have been up and down for the last ten days -- and this big piece of good news allows us to just focus on healing for the next few days. Chris has been a warrior - and I can see the weight of all of this on his shoulders. We received the best possible news and outcome that we could possibly have at this point.
We also learned that the melanoma was 6.5mm deep. It was a monster. A big, aggressive monster. It is this information that I will hold on to everyday when I look at my foot -- and I will be thankful for the scar, thankful that the toe is gone. Thankful. Every. Day.
I think that I have become a meditation junkie. My sister, Karen, sent an article about a friend that was a two-time breast cancer survivor, and she used a meditation app from Hemi-Sync. Last night, I went through the pain management mediation app over and over again. Literally, it was playing in my ears all night long. It is a little bit crazy -- but it works. Another new part of my new normal that I will embrace and appreciate.
Today is a quiet day with the girls -- I'm resting and meditating, and taking whatever pain meds that Chris hands me...and trying to ignore the dreck that is the Barbie movie that the ladies brought home from the library. Perfect to sleep to...and that is about all.
I continue to be in awe of the kindness of strangers. The care that I received from the nurses at Park Nicollet was wonderful. Lovely, caring women with empathy, yet they were fabulously pragmatic.
The most distressing part of yesterday was the shock of having an injection into my toe before surgery. I knew that they need to put a radioactive tracer in me for the node biopsy, but I was informed, by a number of folks, that it would be into my iv line. That was not the case. It was an injection into my toe, just below the open wound. I was hysterical...and not the funny kind. To make matters worse, the first one didn't work -- so it was done twice. The pain from that injection is now my phantom pain in my non-existent toe...so I get to keep feeling it. Lovely.
But -- it is done. I am home. I can move forward.
Today, we got the call that my node biopsy was negative. The cancer did not spread. I think that this was when the full emotional impact hit Chris. We have been up and down for the last ten days -- and this big piece of good news allows us to just focus on healing for the next few days. Chris has been a warrior - and I can see the weight of all of this on his shoulders. We received the best possible news and outcome that we could possibly have at this point.
We also learned that the melanoma was 6.5mm deep. It was a monster. A big, aggressive monster. It is this information that I will hold on to everyday when I look at my foot -- and I will be thankful for the scar, thankful that the toe is gone. Thankful. Every. Day.
I think that I have become a meditation junkie. My sister, Karen, sent an article about a friend that was a two-time breast cancer survivor, and she used a meditation app from Hemi-Sync. Last night, I went through the pain management mediation app over and over again. Literally, it was playing in my ears all night long. It is a little bit crazy -- but it works. Another new part of my new normal that I will embrace and appreciate.
Today is a quiet day with the girls -- I'm resting and meditating, and taking whatever pain meds that Chris hands me...and trying to ignore the dreck that is the Barbie movie that the ladies brought home from the library. Perfect to sleep to...and that is about all.
Wednesday, August 21, 2013
Day 8
I keep hoping that I'm going to wake up from this. After the clean PET scan yesterday, I had a wave of "they'll cut off the toe -- and then this will be done". That just isn't really the case. Today brought that home.
We had our first meeting with an oncologist, Kubiak, and she brought home a great deal of reality. She asked if I wanted to hear the percentages. I'm a glutton for information that I probably don't need. Of course I said yes. She talked about 5 year survival rates and 10 year survival rates. Even if you are just stage 2. This just doesn't go away. I've asked Chris to help me learn how to live without fear and waiting for the other shoe to drop. I've always had a hard time with this -- and now, I'm worried that I'll spiral down into continual panic that any mole, any bump, any anything is a sign that it's back and worse.
We've promised each other that we're going to focus on living our lives -- and I will do my best to live up to that promise. In the meantime, we will focus on one day at a time - and working to figure out what our new normal is. And - get through tomorrow.
I also had my brain MRI done today. Checking one more box. I had asked the tech to play current music -- and then, after it started, thought to myself that I'd rather listen to classical. She managed to change the music about every five minutes -- so, I really got a little bit of everything...at least, what I could hear over the noise of the machine. But, in the middle of it all, in a space between the noise, Copeland's "It's a Gift to be Simple" started. Another song that I sang as a child. One of my mom's favorite songs. What hit me was that God was with me. I felt him. I felt ready. And then I started crying...and my eyes itched...and I'm not allowed to move. Always happens.
By the time we got home, we got the call that the brain scan was clean. We had another win today -- but both Chris and I were feeling the enormity of what we were facing -- no matter what. We also learned that one of the top pathologists in the state reviewed my slides to confirm that initial diagnosis. It seems, that of people that have of melanoma on the bottom of their toe -- less than 1% are white. Seriously. Toe melanoma = me and Bob Marley.
We continue to be overwhelmed by the kindness and care of friends -- and even strangers. I've developed a tendency to cry to nurses. They ask how I hurt my toe, I tell them melanoma -- and that they are cutting it off -- I see their reaction - and I start to cry. My MRI tech from today, her father has stage III melanoma. By the time be both shared our stories, we were both in tears. After my scan, we were hugging and promising to pray for each other. Emails from dear friends, both nearby and far away...text messages from family...the simple power of care and compassion -- why are we not appreciating this when we aren't in crisis?? We are damned lucky...and I'm not going to forget it.
We had our first meeting with an oncologist, Kubiak, and she brought home a great deal of reality. She asked if I wanted to hear the percentages. I'm a glutton for information that I probably don't need. Of course I said yes. She talked about 5 year survival rates and 10 year survival rates. Even if you are just stage 2. This just doesn't go away. I've asked Chris to help me learn how to live without fear and waiting for the other shoe to drop. I've always had a hard time with this -- and now, I'm worried that I'll spiral down into continual panic that any mole, any bump, any anything is a sign that it's back and worse.
We've promised each other that we're going to focus on living our lives -- and I will do my best to live up to that promise. In the meantime, we will focus on one day at a time - and working to figure out what our new normal is. And - get through tomorrow.
I also had my brain MRI done today. Checking one more box. I had asked the tech to play current music -- and then, after it started, thought to myself that I'd rather listen to classical. She managed to change the music about every five minutes -- so, I really got a little bit of everything...at least, what I could hear over the noise of the machine. But, in the middle of it all, in a space between the noise, Copeland's "It's a Gift to be Simple" started. Another song that I sang as a child. One of my mom's favorite songs. What hit me was that God was with me. I felt him. I felt ready. And then I started crying...and my eyes itched...and I'm not allowed to move. Always happens.
By the time we got home, we got the call that the brain scan was clean. We had another win today -- but both Chris and I were feeling the enormity of what we were facing -- no matter what. We also learned that one of the top pathologists in the state reviewed my slides to confirm that initial diagnosis. It seems, that of people that have of melanoma on the bottom of their toe -- less than 1% are white. Seriously. Toe melanoma = me and Bob Marley.
We continue to be overwhelmed by the kindness and care of friends -- and even strangers. I've developed a tendency to cry to nurses. They ask how I hurt my toe, I tell them melanoma -- and that they are cutting it off -- I see their reaction - and I start to cry. My MRI tech from today, her father has stage III melanoma. By the time be both shared our stories, we were both in tears. After my scan, we were hugging and promising to pray for each other. Emails from dear friends, both nearby and far away...text messages from family...the simple power of care and compassion -- why are we not appreciating this when we aren't in crisis?? We are damned lucky...and I'm not going to forget it.
Tuesday, August 20, 2013
Day 7
Day 7. How has it only been a week?
This morning we had our first visit at the U of M. As we sat, waiting for the doctor, the words to a song that I sang as a kid kept running through my head. Everywhere I go The Lord is with me, if I call upon him he shall hear me, never shall I fear, for The Lord is near, everywhere I go. I remember singing this the night before I had some surgery...either my tonsils or my elbow, I don't remember which. It comforted me as a kid to sing and keep those words in mind. It was interesting that they came back to me as I was sitting in the doctor's office, waiting to hear about the results of my PET scan. Once again, they were a comfort.
We had good news today. Delivered in a wonky way -- but good nonetheless. Tuttle asked if I had ever had a brain MRI - and if not, I should get one. When I asked why -- and what was in my PET scan that drove that... "oh - the PET is normal, but you should get a brain scan to confirm"... Well - that was big news -- give me a minute to get my breath back. Good Lord.
We are moving forward with the surgery on my toe for this Thursday. I keep saying that I'm at peace with losing my toe...but it is going to make me sad. It sucks. I said it. It really sucks. But -- if it gives me a future with my sweet family -- then goodbye toe. Tomorrow is our first meeting with oncology. Hopefully, we get a few more details on the specifics of this melanoma and what we might be facing in the long term.
M is getting sick. 103 temp tonight. My baby feels miserable - and I can't hold her because I can't get sick. I'm so thankful that my mom is here. If I can't hold her, I'm glad she can snuggle with grandma. We had her tested for strep - and it was negative....but now we're not so sure.
Overall though, despite potential strep and still with some big hurdles this week...tonight there is happiness. We got a win on our side.
This morning we had our first visit at the U of M. As we sat, waiting for the doctor, the words to a song that I sang as a kid kept running through my head. Everywhere I go The Lord is with me, if I call upon him he shall hear me, never shall I fear, for The Lord is near, everywhere I go. I remember singing this the night before I had some surgery...either my tonsils or my elbow, I don't remember which. It comforted me as a kid to sing and keep those words in mind. It was interesting that they came back to me as I was sitting in the doctor's office, waiting to hear about the results of my PET scan. Once again, they were a comfort.
We had good news today. Delivered in a wonky way -- but good nonetheless. Tuttle asked if I had ever had a brain MRI - and if not, I should get one. When I asked why -- and what was in my PET scan that drove that... "oh - the PET is normal, but you should get a brain scan to confirm"... Well - that was big news -- give me a minute to get my breath back. Good Lord.
We are moving forward with the surgery on my toe for this Thursday. I keep saying that I'm at peace with losing my toe...but it is going to make me sad. It sucks. I said it. It really sucks. But -- if it gives me a future with my sweet family -- then goodbye toe. Tomorrow is our first meeting with oncology. Hopefully, we get a few more details on the specifics of this melanoma and what we might be facing in the long term.
M is getting sick. 103 temp tonight. My baby feels miserable - and I can't hold her because I can't get sick. I'm so thankful that my mom is here. If I can't hold her, I'm glad she can snuggle with grandma. We had her tested for strep - and it was negative....but now we're not so sure.
Overall though, despite potential strep and still with some big hurdles this week...tonight there is happiness. We got a win on our side.
Monday, August 19, 2013
Day 6
I'm not very good at waiting. That said, the absolute terror that I have of actually learning what we are dealing with, stops me cold. But, I don't want to wait anymore. Today, we wait.
This morning was the PET scan. So, waiting at the hospital, waiting while radioactive tracers went through my system, waiting in the PET scan (why is it that your nose always itches when you aren't able to move??), waiting to not be radioactive anymore. Worst part, I couldn't be around my girls. We did FaceTime, but it isn't the same.
Spending the afternoon in quarantine, I did get the benefit of visits from my mom, my dad and my sister. It is hard having the conversations that we are having - and not being able to hold a hand or give a hug. Family is such a gift. Seriously. I can't imagine how anyone could walk through this type of battle without the support system of their family. Our parents, our siblings, aunts and uncles -- and friends that are essentially family, as they are so interwoven within our lives. We have support -- more than I think we ever realized. How do you ever find the words to thank people for just being there, praying for you, knowing that they are sending positive thoughts our way. It's a lot.
My fear is always about my girls. Are they doing ok, are they taken care of, are they scared. Yesterday, when we told them that I was going to lose my toe, I was in tears. M wanted to know if my toe was going to grow back - and that it was weird to see me cry. But, at 5am this morning, she was in our room, not feeling well - and, she finally admitted, scared about my toe. W is just quiet. Offering lots of hugs. Watching. She doesn't miss a thing. I don't know what the future holds, and that scares me for my girls. But, I go back to family, friends - and I know that they are there and they will all make it okay for my two little ladies.
My dad helped remind me today that I come from a pragmatic family. We don't spend time asking "why me" or "how could I have stopped this from happening" - and, he's right. I haven't spent anytime on the 'why' of this -- it just is. It is just something we have to deal with head on. Both of my grandmas and my grandpa faced down cancer. I know, without a doubt, that not a single one asked "why me". I'm sure as hell am not going to bother with it either. Still scared, though.
This morning was the PET scan. So, waiting at the hospital, waiting while radioactive tracers went through my system, waiting in the PET scan (why is it that your nose always itches when you aren't able to move??), waiting to not be radioactive anymore. Worst part, I couldn't be around my girls. We did FaceTime, but it isn't the same.
Spending the afternoon in quarantine, I did get the benefit of visits from my mom, my dad and my sister. It is hard having the conversations that we are having - and not being able to hold a hand or give a hug. Family is such a gift. Seriously. I can't imagine how anyone could walk through this type of battle without the support system of their family. Our parents, our siblings, aunts and uncles -- and friends that are essentially family, as they are so interwoven within our lives. We have support -- more than I think we ever realized. How do you ever find the words to thank people for just being there, praying for you, knowing that they are sending positive thoughts our way. It's a lot.
My fear is always about my girls. Are they doing ok, are they taken care of, are they scared. Yesterday, when we told them that I was going to lose my toe, I was in tears. M wanted to know if my toe was going to grow back - and that it was weird to see me cry. But, at 5am this morning, she was in our room, not feeling well - and, she finally admitted, scared about my toe. W is just quiet. Offering lots of hugs. Watching. She doesn't miss a thing. I don't know what the future holds, and that scares me for my girls. But, I go back to family, friends - and I know that they are there and they will all make it okay for my two little ladies.
My dad helped remind me today that I come from a pragmatic family. We don't spend time asking "why me" or "how could I have stopped this from happening" - and, he's right. I haven't spent anytime on the 'why' of this -- it just is. It is just something we have to deal with head on. Both of my grandmas and my grandpa faced down cancer. I know, without a doubt, that not a single one asked "why me". I'm sure as hell am not going to bother with it either. Still scared, though.
Sunday, August 18, 2013
Day 5
Today was about appreciating the gift of family and friends. My in-laws have spent the last few days with us, managing the girls, making pickles, running non-stop laundry. I've always been weird about laundry. I have a very specific way that I like things done, washed, dried or hung to dry.... Chris has never been allowed to touch the laundry, as I'm convinced that he'll "ruin it". Clearly, that is dumb....and I'm officially over it. Over the last few weeks, my mom or my mother-in-law has done our laundry. Everyone is clean -- and that is about all that matters. They just know how to keep everything running and keep the house calm. What a gift.
My parents and sister arrived this afternoon. Chris got the girls out of the house, knowing that I'd be in tears as soon as I saw them. Smart man. Having them here is like being able to take off a part of the burden that is sitting on the two of us. Tonight, our dear friends, Heidi and Trent came out to the house, bringing a week's worth of food including a fantastic dinner for tonight -- and a lot of laughter. It was the kind of evening that I needed to get bolstered up for this week. It will be a big week. I'm scared - but I also need it to move forward. This will literally be, a life changing week. The idea of that brings me to my knees. Even with all of this support, all of this back-up behind us as we face this beast, it is still Chris and I on the front line. I'm hoping that we'll be able to get off the beach in time.
My parents and sister arrived this afternoon. Chris got the girls out of the house, knowing that I'd be in tears as soon as I saw them. Smart man. Having them here is like being able to take off a part of the burden that is sitting on the two of us. Tonight, our dear friends, Heidi and Trent came out to the house, bringing a week's worth of food including a fantastic dinner for tonight -- and a lot of laughter. It was the kind of evening that I needed to get bolstered up for this week. It will be a big week. I'm scared - but I also need it to move forward. This will literally be, a life changing week. The idea of that brings me to my knees. Even with all of this support, all of this back-up behind us as we face this beast, it is still Chris and I on the front line. I'm hoping that we'll be able to get off the beach in time.
Saturday, August 17, 2013
Day 4
So, at four days in, we've realized a couple of things. First, if we don't sleep at night, by day, our defenses are down...especially mine. It was a tougher day today. I was up most of the night, trying to plan for the future without any idea as to what the future held. I'm a planner by nature, and not having an idea what we're facing, and therefore, not knowing what we need to plan against, is hard. I'll get over it, but it gave me a rough night. C's mantra is 'one day at a time' - and just focus on working through Day 4. I continue to try and hear that - and let all of the planning go. Clearly, this will be a learning experience.
The second thing that we've realized is that we'll need to talk with the kids, at least about my toe, before the whirlwind of next week begins. We need to be at our most calm - and by Tuesday, we should have the results of the PET scan - which has high potential for our not being calm at all. While I'm dreading it a bit -- it will also be a relief. I know that the kids are realizing that something is going on, and that it has something to do with my toe....and that it is bad. W let me know today that she was scared about my toe. Dang - kids are always smarter and more perceptive than we realize. Every time.
The girls and I spent the afternoon watching movies: Robin Hood (the Disney cartoon version, not the Kevin Costner debacle) and Saige or Paige -- I forget. She's an American Girl. Despite being horribly distracted by Jane Seymour's wig, I was still crying at the end...clearly, I'm tired. The movies may not have been great, but the quiet time, curled up with the girls, was a treasure. Meanwhile, C and his mom made pickles and candied jalepenos upstairs. I love canning, and realized that watching it and not being able to participate just made me sad...so movie time. And girl time. I can't complain.
I'm trying to figure out how to meditate. I made it for two minutes this morning. I keep invisioning Gandolf at the bottom of my toe, striking down his staff, shouting "YOU SHALL NOT PASS" to the cancer. I'm not sure that is what you are supposed to do while you meditate -- but I like the visual. I found an app that guides you through mediation -- so I'll give that a try tomorrow. Hopefully, I make it longer than two minutes....but I'm not giving up my Gandolf visual.
Tomorrow I'm low-carbing it in prep for the PET scan. Since I'm basically functioning on my green smoothies, it will be tough. Plus, no caffeine. Ugh.
The second thing that we've realized is that we'll need to talk with the kids, at least about my toe, before the whirlwind of next week begins. We need to be at our most calm - and by Tuesday, we should have the results of the PET scan - which has high potential for our not being calm at all. While I'm dreading it a bit -- it will also be a relief. I know that the kids are realizing that something is going on, and that it has something to do with my toe....and that it is bad. W let me know today that she was scared about my toe. Dang - kids are always smarter and more perceptive than we realize. Every time.
The girls and I spent the afternoon watching movies: Robin Hood (the Disney cartoon version, not the Kevin Costner debacle) and Saige or Paige -- I forget. She's an American Girl. Despite being horribly distracted by Jane Seymour's wig, I was still crying at the end...clearly, I'm tired. The movies may not have been great, but the quiet time, curled up with the girls, was a treasure. Meanwhile, C and his mom made pickles and candied jalepenos upstairs. I love canning, and realized that watching it and not being able to participate just made me sad...so movie time. And girl time. I can't complain.
I'm trying to figure out how to meditate. I made it for two minutes this morning. I keep invisioning Gandolf at the bottom of my toe, striking down his staff, shouting "YOU SHALL NOT PASS" to the cancer. I'm not sure that is what you are supposed to do while you meditate -- but I like the visual. I found an app that guides you through mediation -- so I'll give that a try tomorrow. Hopefully, I make it longer than two minutes....but I'm not giving up my Gandolf visual.
Tomorrow I'm low-carbing it in prep for the PET scan. Since I'm basically functioning on my green smoothies, it will be tough. Plus, no caffeine. Ugh.
Friday, August 16, 2013
Day 3 - Part II
Today we had the first of our surgical consults with the Park Nicollet team - podiatrist and oncological surgeon. We are running a parallel path with Park Nicollet and the U of M, in order to make sure that we keep the pressure on to get the cancer removed - and to quickly get into whatever protocol that will be the most aggressive to fight whatever other potential cancer that might be in my body - or to prevent it.
While we didn't have any surprises with either meeting, it did make everything a bit more 'real'. At this point, given the size, ulceration and the depth of the melanoma, I'm already at Stage II. Heaton, the surgical oncologist at PN, put it at about a 30% chance of spreading. That was hard to hear. Especially, with that 20/20 hindsight vision -- Chris suggested that I see a dermatologist back in May. So that sucks.
Meeting with the podiatrist was a little harder - but also, not a surprise. Back when he gave me the results of the biopsy - and after laying out the malignant melanoma, he did a soft sell of "maybe I'll lose part of the toe". Today was a bit more realistic - as it will be a full toe amputation and probably deep into the ball of my foot. He does specialize in amputation salvage - it was hard to hear. That said, he said I won't lose any functionality -- unless I was an Olympics-type athlete. Clearly, that is not the case. With inserts in my shoe - I'll be walking like normal. C keeps telling me that tennis shoes are sexy. I'm not buying it - but I'll accept it. In the scheme of things, this feels small -- and if part of foot is what I have to lose to not have cancer -- then amputate away. I do have some fabulous shoes though -- and again, hindsight being 20/20 -- probably shouldn't have spent as much money on them as I did. In the spirit of finding a less complicated way to live -- the priority on the fabulous shoes, or sweater or any other thing has dropped away to nothing. All I really want is time -- time with my husband, my girls and my family. That's about it. Pretty uncomplicated, when you think about it.
While we didn't have any surprises with either meeting, it did make everything a bit more 'real'. At this point, given the size, ulceration and the depth of the melanoma, I'm already at Stage II. Heaton, the surgical oncologist at PN, put it at about a 30% chance of spreading. That was hard to hear. Especially, with that 20/20 hindsight vision -- Chris suggested that I see a dermatologist back in May. So that sucks.
Meeting with the podiatrist was a little harder - but also, not a surprise. Back when he gave me the results of the biopsy - and after laying out the malignant melanoma, he did a soft sell of "maybe I'll lose part of the toe". Today was a bit more realistic - as it will be a full toe amputation and probably deep into the ball of my foot. He does specialize in amputation salvage - it was hard to hear. That said, he said I won't lose any functionality -- unless I was an Olympics-type athlete. Clearly, that is not the case. With inserts in my shoe - I'll be walking like normal. C keeps telling me that tennis shoes are sexy. I'm not buying it - but I'll accept it. In the scheme of things, this feels small -- and if part of foot is what I have to lose to not have cancer -- then amputate away. I do have some fabulous shoes though -- and again, hindsight being 20/20 -- probably shouldn't have spent as much money on them as I did. In the spirit of finding a less complicated way to live -- the priority on the fabulous shoes, or sweater or any other thing has dropped away to nothing. All I really want is time -- time with my husband, my girls and my family. That's about it. Pretty uncomplicated, when you think about it.
Day 3
I always had a bit of a desire to start a blog.... I've tried it before, primarily blogging about my two girls. But, being a mom, working full time and generally running around like a crazy person kept me from posting with any kind of regularity. So - this past Spring, my husband and I decided that we need to get rid of the 'running around like a crazy person' lifestyle that we were both leading -- and one of us needed to step away from our job. I left my job at the end of May. For the first couple of weeks, I was actually overwhelmed from the sense of potential -- how could I use this time? What were all of the projects that I've always wanted to tackle, but never had the time? What cool things could I do with the girls so that this would be the BEST SUMMER EVER. Our entire goal of creating an uncomplicated life for our family was actually getting more complicated because there were so many things that I wanted to do. Crazy. C always says that I have a way of complifying things. So true.
That was the first part of June. Fast forward to today. Day 3 after fighting out that what I thought was an injury on my toe is actually malignant melanoma. Things are getting pretty straight forward pretty fast.
I've had the open wound on my toe since mid-June. It looked like a bad blood blister before that. I faintly remembered pinching my toe when I was running around back in April. We spent time at the wound clinic, met with a podiatrist -- and kept rolling with their assessment that, because it was the bottom of my toe, some sort of nasty bacteria had gotten in there, which is why it wasn't healing. At about week 7 of this, the podiatrist finally did a biopsy. That puts us to this week.
We are off today for our first set of surgical consults, this one with the originating podiatrist and an associated oncological surgeon. Thankfully, via the gift of a friend of a friend, we have another set at the U of M cancer center next week. They specialize in melanoma -- and we are hopeful that we can shift my care to U of M as this moves forward.
Honestly, day 1 was a blur -- yet really clear. I now have two jobs - protect my little girls from having their whole world being tossed upside down -- and fight this stupid disease. I also discovered, on day 1 - that C, my amazing husband, is the best advocate that I could hope for. He spent hours on the phone with the U getting records transferred, getting more information -- and basically laying out our path for the next week. He is amazing. Seriously.
Day 2 meant letting people know about what is going on. Neither C nor myself are great at asking people for help. In fact, especially when folks come to visit us -- we pride ourselves in taking care of them. We will be learning how receive help - and fast. It's interesting to me, that what hits both of us the fastest in terms of getting emotionally overwhelmed, is when someone reaches out in kindness, in prayer, with help. Wow. It literally takes my breath away. Just the offer of prayers nearly brings me to my knees, I am so thankful.
So today - Day 3 -- we have our first appointment with doctors. I am out of sweats for the first time in weeks. When you are fighting for your life, you don't show up in a ratty old t-shirt. I know that today I will learn the potential of losing most or all of my toe. Possibly my foot. At this point - as long as the cancer is out of my body, I can deal with whatever I have left over. Here's to hoping that I can make some good money on ebay selling the fabulous sandals and high heels that I will never wear again.
That was the first part of June. Fast forward to today. Day 3 after fighting out that what I thought was an injury on my toe is actually malignant melanoma. Things are getting pretty straight forward pretty fast.
I've had the open wound on my toe since mid-June. It looked like a bad blood blister before that. I faintly remembered pinching my toe when I was running around back in April. We spent time at the wound clinic, met with a podiatrist -- and kept rolling with their assessment that, because it was the bottom of my toe, some sort of nasty bacteria had gotten in there, which is why it wasn't healing. At about week 7 of this, the podiatrist finally did a biopsy. That puts us to this week.
We are off today for our first set of surgical consults, this one with the originating podiatrist and an associated oncological surgeon. Thankfully, via the gift of a friend of a friend, we have another set at the U of M cancer center next week. They specialize in melanoma -- and we are hopeful that we can shift my care to U of M as this moves forward.
Honestly, day 1 was a blur -- yet really clear. I now have two jobs - protect my little girls from having their whole world being tossed upside down -- and fight this stupid disease. I also discovered, on day 1 - that C, my amazing husband, is the best advocate that I could hope for. He spent hours on the phone with the U getting records transferred, getting more information -- and basically laying out our path for the next week. He is amazing. Seriously.
Day 2 meant letting people know about what is going on. Neither C nor myself are great at asking people for help. In fact, especially when folks come to visit us -- we pride ourselves in taking care of them. We will be learning how receive help - and fast. It's interesting to me, that what hits both of us the fastest in terms of getting emotionally overwhelmed, is when someone reaches out in kindness, in prayer, with help. Wow. It literally takes my breath away. Just the offer of prayers nearly brings me to my knees, I am so thankful.
So today - Day 3 -- we have our first appointment with doctors. I am out of sweats for the first time in weeks. When you are fighting for your life, you don't show up in a ratty old t-shirt. I know that today I will learn the potential of losing most or all of my toe. Possibly my foot. At this point - as long as the cancer is out of my body, I can deal with whatever I have left over. Here's to hoping that I can make some good money on ebay selling the fabulous sandals and high heels that I will never wear again.
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