So -- here we are. December 4, 2014. Well past Day365. I'd love to say, that the journey with melanoma is done and I'm NED and have been for MONTHS --- but I'm not and haven't been NED, really at all -- unless you count my brief time post toe amputation. I guess, at my first six month scan, I was considered cancer-free....but all of that changed at the 1 year mark. Interferon was rough. There is no sugar-coating that one. In many way, and thankfully, I didn't completely realize how bad it was until it was out of my system. Is it possible to forget what it feels like to "feel like yourself" because it has been so long? That was life on Interferon. I wasn't myself, but didn't quite know it. I went through the motions and I functioned -- but I slept a lot. I also lost the ability to read or focus on a book. Stealing reading from me is the biggest thing that I recall from the Interferon days.
Anyway -- it bought us some time -- at least, that is what I choose to believe. So here we are - 5 months after my last scan that showed melanoma in my brain, my lungs and quite recently, my liver. This damn thing really wants to kill me. I've done gamma knife radiosurgery, four infusions of ipilimumab and numerous shots of leukine. Scans will show next week whether or not I've turned the corner on this sucker. If not, I'll be starting PD-1. Merry Christmas.
This is a mind-boggling experience -- I feel better than I've felt in years. Seriously. But - I know that this insidious monster is creeping around my body looking for new places to take hold. I have a lump on my back that we are waiting for biopsy results. A random lump. Is that a new tumor home? It keeps trying to grow in my lungs -- and, with every twinge of a headache or a stupid twist of words, I wonder if it is taking hold of my brain again. I look at my girls and just want to figure out what the silver bullet is that will allow me to raise them, see them as adults, become a grandma -- grow old with Chris. Some days, it doesn't seem like much to ask -- most days, it feels like I am asking for a miracle. I guess I am.
On the flip side of this -- I was searching for an uncomplicated life. Take cancer out of the mix -- and we are living and appreciating a life that is calmer, simpler, focused on time together as a family. I couldn't ask for a bigger gift than that.
Chris has taken to putting fires in the fireplace each night. I keep thinking that he is doing it to set a calm stage within the house....he says he is doing it because the house is cold. I just like watching the fire. It can be a mean, destructive force -- but controlled, it is incredibly peaceful.
Just learned that our Ipilimumab infusions, had we not had insurance, would have cost $86M each. EACH. After four infusions, that'd be a house. A HOUSE. I wonder what the PD-1 is going to run. I can't even imagine at this point.
I need to get back to focusing on what I am thankful for.... today, I am thankful that Chris has a job that provides an option for good insurance. I am thankful for the Advent season - and how we are spending time as a family talking about what Advent means. I am thankful that we can light fires in the fireplace. I am thankful that our girls love to play games - as it gives us a great way to spend time together as a family. I am thankful for our little dog that snores like a banshee. I am thankful that I have time to volunteer over at the girls' school (I can laminate like a boss). I am thankful for feeling good. Today, I feel good, I feel like myself, and I have hope.
Thursday, December 4, 2014
Tuesday, October 8, 2013
Day 56
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....
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....
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.
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