It is 4:15 am and I am nestled into my hospital recliner.
Hmmm...I'll work on that one.
But, I am in the hospital for a few days. Saturday evening I started to feel some sharp pains in my right side. I was worried it might be my appendix after playing doctor via Google, so I called my mom who brought me to the ER. Ten hours later I was diagnosed with two kidneys that were not functioning properly, kidney stones, and at least four pulmonary embolisms (blood clots in my lungs). On the sunny side-my appendix looks great!
So I have been admitted to the hospital. First up is using a different blood thinner than the one I normally use to try to ensure no more blood clots form. Then we will address my kidneys. My pain has increased slightly, but overall I feel about the same and with my painkillers all is tolerable.
Under the category of well, that sucks: Kelly and I were supposed to leave next weekend for a trip to Aruba, but that plan was (not surprisingly) nixed. We were really looking forward to a few days away together, but hopefully we can arrange something else down the road.
Much more to write, but I am actually feeling groggy and am going to try to grab some sleep.
Monday, October 28, 2013
Wednesday, October 9, 2013
Nap vs. Blog
The wedge biopsy procedure went smoothly last Tuesday. I had to stay over, as expected, due to a chest tube (um, gross). Everyone on "Tower 2" (cancer floor) was excellent. They let me move to a private room when I had a rowdy roommate. True story: Her phone would ring every 10-15 minutes. If she wasn't there to answer they would call my line to see if I could go find her. Really. The staff was also great helping me get comfortable with the um, gross tube.
Unfortunately, the first part of the testing from the biopsies has come through indicating the cancer in my lungs is not the nice, grow slowly neuroendocrine cancer, but cervical cancer. If you go to my post Reality (iPad is acting up, so no hyperlink for you), you will realize why this sucks.
My dad is also not doing well. I ask for your continued prayers for his healing.
But most of all right now, I ask you to think of my mom. She is a wonderful woman who does not deserve to see her husband and daughter go through these things. I have no idea where she gets the strength to get up each morning, but I am thankful she does and so fortunate that I get to spend time with her almost every day.
No kiddo story today...they are sweet and bright and I couldn't do justice to one of their wonderful little tales.
- Posted using BlogPress from my iPad
Unfortunately, the first part of the testing from the biopsies has come through indicating the cancer in my lungs is not the nice, grow slowly neuroendocrine cancer, but cervical cancer. If you go to my post Reality (iPad is acting up, so no hyperlink for you), you will realize why this sucks.
My dad is also not doing well. I ask for your continued prayers for his healing.
But most of all right now, I ask you to think of my mom. She is a wonderful woman who does not deserve to see her husband and daughter go through these things. I have no idea where she gets the strength to get up each morning, but I am thankful she does and so fortunate that I get to spend time with her almost every day.
No kiddo story today...they are sweet and bright and I couldn't do justice to one of their wonderful little tales.
- Posted using BlogPress from my iPad
Friday, September 27, 2013
Retreat
Earlier this month I attended a retreat for women with cancer at Silver Bay on Lake George. For those of you who know me well, you know this sounds like an unlikely journey for me to go on voluntarily. I had seen the brochure at the cancer center, but never picked it up. Then one chemo day the cancer center social worker, Karen, popped in my room and...well, I am not sure what happened, but by the time she left I had consented to go.
Silver Bay is a beautiful retreat. When I was a teenager I attended several church gatherings there. Two high points from those days: tipping a canoe with my friend Rama and having my youth group leader, Dennis, teach us a little about astronomy out on the point. My takeaway: who knows what is out there, but it is breathtaking.
I digress. Surprise!
The women's cancer retreat was very rewarding. The simple fact is, I know you care and you love me and would help in any way you can, but at the end of the day (most of) you are cancer-free and I am not. These women all had cancer. These women understood the chronic pain, the apprehension before each scan, the worry that 'is this weird breathing the cancer spreading or just some allergies?'
It was a relief to let the walls down for a while. To not have the pressure of being an 'inspiration' because I am willing to keep fighting this dreadful disease. To belly dance in a chair (not so pretty). To easily laugh with others about side effects that others may feel awkward even talking about.
I hate to admit it, but I am thankful Karen came into my room that day. Whatever voodoo she worked to get me to Silver Bay, I liked it.
- Posted using BlogPress from my iPad
Silver Bay is a beautiful retreat. When I was a teenager I attended several church gatherings there. Two high points from those days: tipping a canoe with my friend Rama and having my youth group leader, Dennis, teach us a little about astronomy out on the point. My takeaway: who knows what is out there, but it is breathtaking.
I digress. Surprise!
The women's cancer retreat was very rewarding. The simple fact is, I know you care and you love me and would help in any way you can, but at the end of the day (most of) you are cancer-free and I am not. These women all had cancer. These women understood the chronic pain, the apprehension before each scan, the worry that 'is this weird breathing the cancer spreading or just some allergies?'
It was a relief to let the walls down for a while. To not have the pressure of being an 'inspiration' because I am willing to keep fighting this dreadful disease. To belly dance in a chair (not so pretty). To easily laugh with others about side effects that others may feel awkward even talking about.
I hate to admit it, but I am thankful Karen came into my room that day. Whatever voodoo she worked to get me to Silver Bay, I liked it.
- Posted using BlogPress from my iPad
Monday, September 9, 2013
Here I Am....Brought to You Like a Hurricane...
Ah Whitesnake lyrics....such a surprise they didn't make it over the long haul.
Speaking of long hauls I know it has once again been far too long since I have posted. I am on week 4 of a treatment schedule, so it should be my best week. Unfortunately, the hip pain continues to make uprightness painful and now I have some random thing going on with my feet that I need to call the office about. I should have done it today, but life is busy. Tomorrow...
I have had a great deal of down time which often means me, a heating pad, a variety of blankets, my Kindle and/or a remote control. Ask me about any trashy Bravo show. I can probably fill you in. I am not proud of that fact. :)
During my down time I have lots of time to think. Sometimes my mind wanders to the negative, but I really fight to keep it towards the positive. One of those positive things are the people who have been with us through this journey. I think of Meg who came up with Team SMAC and had one of her graphic designers take time to make "our" ninja. I think of my mother-in-law who has spent endless hours here with me. Often chasing children, but sometimes just talking to me helping to pass the down time. I think of my former neighbor Lisa who stops by and texts. And when we go out to dinner makes sure I eat (the hospital folks would be proud). I think of Ruth, one of my nurses, who has twin boys and simply by hearing her talk about her twins has helped me to better cope when hearing stories of all twins. I think of my mom who whips this house into order within seconds of arriving and continues to help us, even as she cares for my ailing father. I think of Brenda, Kevin, and Lori - all "alternative" therapists who have helped me through reiki, acupuncture, and massage (yes, I am allowed massages!).
I can go on and on: my father-in-law (he might require a whole post...), Kelli-girl, Ms. Ginny (aka the Cookie Lady), my neighbor Jane who is an amazing cook, my church family, my preschool family, my oncology family, Courtney - my late night texting buddy, Bethie - a dear college friend who reentered my life, my swimming friend Deb who arranged for an audio recording for my children, I could go on and on...and I think in another post I will tell you more about these wonderful people. But, the point is whenever I start to think of the crappy stuff...like my inability to wander the aisles of Target...I think of one of these people and my attitude changes completely.
My guess is you are one of the people I think of at some point. So, thank you. What you do for my spirit I am incapable of putting into words. I am just grateful that you are part of my life and have stuck with me (or joined me) for the past two years.
Speaking of long hauls I know it has once again been far too long since I have posted. I am on week 4 of a treatment schedule, so it should be my best week. Unfortunately, the hip pain continues to make uprightness painful and now I have some random thing going on with my feet that I need to call the office about. I should have done it today, but life is busy. Tomorrow...
I have had a great deal of down time which often means me, a heating pad, a variety of blankets, my Kindle and/or a remote control. Ask me about any trashy Bravo show. I can probably fill you in. I am not proud of that fact. :)
During my down time I have lots of time to think. Sometimes my mind wanders to the negative, but I really fight to keep it towards the positive. One of those positive things are the people who have been with us through this journey. I think of Meg who came up with Team SMAC and had one of her graphic designers take time to make "our" ninja. I think of my mother-in-law who has spent endless hours here with me. Often chasing children, but sometimes just talking to me helping to pass the down time. I think of my former neighbor Lisa who stops by and texts. And when we go out to dinner makes sure I eat (the hospital folks would be proud). I think of Ruth, one of my nurses, who has twin boys and simply by hearing her talk about her twins has helped me to better cope when hearing stories of all twins. I think of my mom who whips this house into order within seconds of arriving and continues to help us, even as she cares for my ailing father. I think of Brenda, Kevin, and Lori - all "alternative" therapists who have helped me through reiki, acupuncture, and massage (yes, I am allowed massages!).
I can go on and on: my father-in-law (he might require a whole post...), Kelli-girl, Ms. Ginny (aka the Cookie Lady), my neighbor Jane who is an amazing cook, my church family, my preschool family, my oncology family, Courtney - my late night texting buddy, Bethie - a dear college friend who reentered my life, my swimming friend Deb who arranged for an audio recording for my children, I could go on and on...and I think in another post I will tell you more about these wonderful people. But, the point is whenever I start to think of the crappy stuff...like my inability to wander the aisles of Target...I think of one of these people and my attitude changes completely.
My guess is you are one of the people I think of at some point. So, thank you. What you do for my spirit I am incapable of putting into words. I am just grateful that you are part of my life and have stuck with me (or joined me) for the past two years.
Wednesday, August 21, 2013
URLs, CT scans, and a crazy 5 year old
Turns out I had the wrong URL for my Pampered Chef site in my last post. Here is the correct URL:
http://new.pamperedchef.com/pws/suzannemurphy
I also wanted to mention that I really love the Fundraiser program PC does. A percentage of sales from each party goes directly to your cause - whether it is a national cause, like the American Cancer Society, or a more personal cause, like a friend struggling with the cost of medical bills. I also donate a percentage of my earnings to the cause as a way to give back to the community that has been so giving to my family. If you are interested, contact me - this is my favorite type of party!
Medical news: last week I had a scan to check on the tumors in my torso. The tumors in my liver and abdomen are shrinking slightly while those in my lungs are growing slightly. I suppose we are at a 'stable' place for now. In a few weeks I am going to meet with a lung and chest surgeon about having a biopsy of the tumors in my lungs. The purpose is two-fold: determine if the lung tumors are related to the cervical cancer or the neuroendocrine cancer. The second purpose is to do a test called a chemotherapy assay. In this test a variety of chemotherapy agents are applied to the tumor to see which ones work best in the lab. Dr. S can then use this information to help him decide where to go from here.
Last weekend we went up to my in-laws' home on Lake George where my father-in-law surprised Rory with his very own fishing pole. And worms. Rory was all smiles. He was even more thrilled after catching over 20 sunnies off the dock. He'd put his pole in and almost instantly had a fish. His little brothers were equally excited by watching the fish in the bucket before we put them back in the water. It was great to see Rory have such fun with a new hobby!
- Posted using BlogPress from my iPad
http://new.pamperedchef.com/pws/suzannemurphy
I also wanted to mention that I really love the Fundraiser program PC does. A percentage of sales from each party goes directly to your cause - whether it is a national cause, like the American Cancer Society, or a more personal cause, like a friend struggling with the cost of medical bills. I also donate a percentage of my earnings to the cause as a way to give back to the community that has been so giving to my family. If you are interested, contact me - this is my favorite type of party!
Medical news: last week I had a scan to check on the tumors in my torso. The tumors in my liver and abdomen are shrinking slightly while those in my lungs are growing slightly. I suppose we are at a 'stable' place for now. In a few weeks I am going to meet with a lung and chest surgeon about having a biopsy of the tumors in my lungs. The purpose is two-fold: determine if the lung tumors are related to the cervical cancer or the neuroendocrine cancer. The second purpose is to do a test called a chemotherapy assay. In this test a variety of chemotherapy agents are applied to the tumor to see which ones work best in the lab. Dr. S can then use this information to help him decide where to go from here.
Last weekend we went up to my in-laws' home on Lake George where my father-in-law surprised Rory with his very own fishing pole. And worms. Rory was all smiles. He was even more thrilled after catching over 20 sunnies off the dock. He'd put his pole in and almost instantly had a fish. His little brothers were equally excited by watching the fish in the bucket before we put them back in the water. It was great to see Rory have such fun with a new hobby!
- Posted using BlogPress from my iPad
Thursday, August 8, 2013
Work
I miss working. I miss interacting with new people who are not doctors or nurses. I miss the challenge of doing something new.
I cannot go back to my old job. It is a deadline-driven job and I cannot guarantee I will feel well enough to meet my deadlines. Plus, chemo brain. For those who have not heard of chemo brain it is a term used to describe the forgetfulness and slower thought process of those on chemo. Again, not great for my former profession.
So I thought about what I could do, factoring in my hip pain, treatment schedule, and medications.
Turns out that list is fairly short. But then my friend Betsy came over to do a Pampered Chef party with me as the hostess. And it hit me...this would be a great job. Flexible hours, work when my treatment schedule allowed, and selling a great product that people can actually use in their homes!
I talked to Kelly and he agreed to sign up with me, that way if I am unexpectedly having a rough day, he can fill in for me. (I know...he should probably just do the cooking part of each show anyways!)
We would love to have some of you as our first hosts/hostesses! In September all stoneware (like the famous pizza stone) will be 20% off, so it is a great time to host a party. I also have some clever, useful, and affordable Christmas gift ideas for teachers, etc. You can be a host or hostess in many different ways:
1) Host a show where I come to your house (again, with wine!), you invite friends and family, and we make some yummy food. One friend feels her house is too small, so we are going to have her party at my house. Keep that in mind if you feel the same way! You will earn free and half price products for hosting. Kelly and I earned over $200 in free products when we hosted!
2) Host a catalog show. I will give you catalogs for you to give to your friends and family. They can then place orders online through my website or by contacting me. Easy breezy. And, you will also earn free and half price products for yourself!
3) If you would like some Pampered Chef products, but don't want to host a party, you can go to our website and place an order:
http://new.pamperedchef.com/pws/suzannemurphy
I'd love to hear from you - Pampered Chef sells awesome, reliable products that you will love to use. Thanks!
Email to reach us at: suzanne.murphy@gmail.com
I cannot go back to my old job. It is a deadline-driven job and I cannot guarantee I will feel well enough to meet my deadlines. Plus, chemo brain. For those who have not heard of chemo brain it is a term used to describe the forgetfulness and slower thought process of those on chemo. Again, not great for my former profession.
So I thought about what I could do, factoring in my hip pain, treatment schedule, and medications.
Turns out that list is fairly short. But then my friend Betsy came over to do a Pampered Chef party with me as the hostess. And it hit me...this would be a great job. Flexible hours, work when my treatment schedule allowed, and selling a great product that people can actually use in their homes!
I talked to Kelly and he agreed to sign up with me, that way if I am unexpectedly having a rough day, he can fill in for me. (I know...he should probably just do the cooking part of each show anyways!)
We would love to have some of you as our first hosts/hostesses! In September all stoneware (like the famous pizza stone) will be 20% off, so it is a great time to host a party. I also have some clever, useful, and affordable Christmas gift ideas for teachers, etc. You can be a host or hostess in many different ways:
1) Host a show where I come to your house (again, with wine!), you invite friends and family, and we make some yummy food. One friend feels her house is too small, so we are going to have her party at my house. Keep that in mind if you feel the same way! You will earn free and half price products for hosting. Kelly and I earned over $200 in free products when we hosted!
2) Host a catalog show. I will give you catalogs for you to give to your friends and family. They can then place orders online through my website or by contacting me. Easy breezy. And, you will also earn free and half price products for yourself!
3) If you would like some Pampered Chef products, but don't want to host a party, you can go to our website and place an order:
http://new.pamperedchef.com/pws/suzannemurphy
I'd love to hear from you - Pampered Chef sells awesome, reliable products that you will love to use. Thanks!
Email to reach us at: suzanne.murphy@gmail.com
Wednesday, August 7, 2013
I am running out of title ideas for basic updates.
I have returned from Michigan after a great mini-vacation with my mom. We were able to spend lots of time with family and my cousin's wedding was beautiful. My only comment is do not have my mom push you in a wheelchair. Thankfully I can't feel my toes so the bumps into various metal poles didn't hurt too much!
On Tuesday I had a pelvic MRI because Dr. S was concerned my severe hip pain could be caused by the cancer spreading. The MRI was brutal - I cannot be on my back comfortably and had to be on the hard table being still for about 45 minutes. I thought of my husband's cousin who had to have an MRI of her brain a few days after brain surgery while lying on her staples and thought...she had the fortitude to make it through, so can I. Thankfully, the MRI showed no signs of cancer in my bones or pelvic organs.
He changed my pain killer plan so now I am on a long term pain killer, use other meds for short term pain relief, and flexaril - a muscle relaxer - has been added to see if that helps. Last night I took my meds, fell asleep at 11 and woke up at 1. In the afternoon. I think I will space out my meds a bit more tonight!
Tomorrow my beloved grandfather-in-law, Pa, is having a pacemaker put it. I know this is a very safe surgery, but please keep him in your thoughts. He is a feisty 94 year old with lots of living still to do.
My dad is still in the hospital. He receives dialysis 3 days a week and that seems to help his mental clarity. Overall, his condition seems to be stable - not going backwards, but also not making much progress. I am hopeful once he is in a rehab facility that changes.
Kid story of the day:
Kyan and Rory go to camp at a place called the Dome. They love it there and come home exhausted from all the activities they do. One of Kyan's favorite sports is baseball - he must take after his great grandfather. The Dome has a batting cage. Kyan ended up spending about 3 hours in the cage and came home with a blistered hand. The next day I thought that would slow him down a little. No sir. Back in the cage again. I think his great grandfather Stokes would be proud.
On Tuesday I had a pelvic MRI because Dr. S was concerned my severe hip pain could be caused by the cancer spreading. The MRI was brutal - I cannot be on my back comfortably and had to be on the hard table being still for about 45 minutes. I thought of my husband's cousin who had to have an MRI of her brain a few days after brain surgery while lying on her staples and thought...she had the fortitude to make it through, so can I. Thankfully, the MRI showed no signs of cancer in my bones or pelvic organs.
He changed my pain killer plan so now I am on a long term pain killer, use other meds for short term pain relief, and flexaril - a muscle relaxer - has been added to see if that helps. Last night I took my meds, fell asleep at 11 and woke up at 1. In the afternoon. I think I will space out my meds a bit more tonight!
Tomorrow my beloved grandfather-in-law, Pa, is having a pacemaker put it. I know this is a very safe surgery, but please keep him in your thoughts. He is a feisty 94 year old with lots of living still to do.
My dad is still in the hospital. He receives dialysis 3 days a week and that seems to help his mental clarity. Overall, his condition seems to be stable - not going backwards, but also not making much progress. I am hopeful once he is in a rehab facility that changes.
Kid story of the day:
Kyan and Rory go to camp at a place called the Dome. They love it there and come home exhausted from all the activities they do. One of Kyan's favorite sports is baseball - he must take after his great grandfather. The Dome has a batting cage. Kyan ended up spending about 3 hours in the cage and came home with a blistered hand. The next day I thought that would slow him down a little. No sir. Back in the cage again. I think his great grandfather Stokes would be proud.
Wednesday, July 31, 2013
July 31
So I have some Stalkers who send me emails when my blog has not been updated. Granted, these Stalkers often come bearing cookies so they aren't too dangerous, but just in case...I am posting!
Round 4 of chemo sucked. Extra hip pain, lots of stomach queasiness, severe shortness of breath, plus new things like headaches. I am coming out of it now, but that recovery week is becoming more and more dreaded.
On the bright side, have I mentioned my husband is awesome? He makes me a milkshake almost every night - something I can consume with calories - works his arse off every day, and then comes home to take care of both the kids AND me. Truly, for better or worse.
My dad is improving! He gets dialysis three times a week, and they still aren't sure what caused his severe downturn, but I am ever so thankful he is starting to heal. It will be a long road to recovery, and no one really knows how recovered he will be, but I am thankful he is on a healing path.
Thursday my mom and I are flying to Michigan for my cousin's wedding. I am so excited to see that side of my family and celebrate along with my cousin, who chose a brilliant day to get married as it as also our anniversary. We'll have to celebrate our 11(!) years together when I get home.
I have asked for a wheelchair in the airport and recently got a handicapped tag for my car (though I have yet to use it..those spots fill quickly!). The hip pain has become lifestyle changing and I need to talk to Dr. S more - whether he has some ideas or could direct me to a pain management doctor - I need to do something to change this. I can't even play ball with the boys for more than 5 minutes and the older two are at the point they know something is off with that. As always, I am honest with them but it tough for such young ones to understand.
Okay...two kid stories today...
Ky goes to camp all day and comes home exhausted. Last night we had some cousins over late and were all up...except Ky who curled up on the hardwood floor in front of the couch and fell asleep.
Crosby is a water daredevil. Last night my little 22 month old jumped off the diving board and swam to the ladder wearing only his bubble. No grown up help. I am not going to lie, I could barely watch!
Alright, we need a Rory story for balance. Rory loves Legos. He builds the sets, but then he often takes them apart and builds his own little creations. I love this about him. Love it. This is how Legos were meant to be used (in my humble opinion) and I love the enthusiasm he has when showing us his new creations.
- Posted using BlogPress from my iPad
Round 4 of chemo sucked. Extra hip pain, lots of stomach queasiness, severe shortness of breath, plus new things like headaches. I am coming out of it now, but that recovery week is becoming more and more dreaded.
On the bright side, have I mentioned my husband is awesome? He makes me a milkshake almost every night - something I can consume with calories - works his arse off every day, and then comes home to take care of both the kids AND me. Truly, for better or worse.
My dad is improving! He gets dialysis three times a week, and they still aren't sure what caused his severe downturn, but I am ever so thankful he is starting to heal. It will be a long road to recovery, and no one really knows how recovered he will be, but I am thankful he is on a healing path.
Thursday my mom and I are flying to Michigan for my cousin's wedding. I am so excited to see that side of my family and celebrate along with my cousin, who chose a brilliant day to get married as it as also our anniversary. We'll have to celebrate our 11(!) years together when I get home.
I have asked for a wheelchair in the airport and recently got a handicapped tag for my car (though I have yet to use it..those spots fill quickly!). The hip pain has become lifestyle changing and I need to talk to Dr. S more - whether he has some ideas or could direct me to a pain management doctor - I need to do something to change this. I can't even play ball with the boys for more than 5 minutes and the older two are at the point they know something is off with that. As always, I am honest with them but it tough for such young ones to understand.
Okay...two kid stories today...
Ky goes to camp all day and comes home exhausted. Last night we had some cousins over late and were all up...except Ky who curled up on the hardwood floor in front of the couch and fell asleep.
Crosby is a water daredevil. Last night my little 22 month old jumped off the diving board and swam to the ladder wearing only his bubble. No grown up help. I am not going to lie, I could barely watch!
Alright, we need a Rory story for balance. Rory loves Legos. He builds the sets, but then he often takes them apart and builds his own little creations. I love this about him. Love it. This is how Legos were meant to be used (in my humble opinion) and I love the enthusiasm he has when showing us his new creations.
- Posted using BlogPress from my iPad
Thursday, July 11, 2013
Here I Am
Here I am.
I feel like I should start all my recent posts that way!
As you can imagine from no recent posts, my recovery period this time was pretty tough. A solid week of exhaustion - a lot of time in bed - it pretty much sucked. Midweek Kelly brought a chair to our bedroom which was great. Even though I was tired, at least I was sitting up. Too much time in bed makes one feel worse, I think.
My one complaint is shortness of breath upon basic activities, like walking. No one really knows why it is happening, it is just one of my joyous side effects. It may be the tumors on my lungs, but that is unlikely because even though they are 'innumerable,' they are small. I have learned to walk slowly, take breaks, and hope for someplace to sit at the top of a flight of stairs! In a few weeks I am flying to Michigan for my cousin's wedding. I think I am going to need to get to the airport bright and early to have time to get to my plane!
My dad is slowly improving. I finally got to see him yesterday, which was good for my soul as I had not seen him. He was a little confused when my mom and I arrived, but was much better by the time we left. They are working to get him into a rehab facility close to home. I hope that happens because it would be easier to visit him and he would have some stability in terms of the staff, etc.
Today's kid story is about Crosby. On Saturday we were all out by the pool and Kelly jumped off the diving board. Crosby saw him go, and went running for the board. He climbed up and went right to the end of the board...and then (thankfully) decided that was a little to high and climbed down. Until the last moment we thought he was going to go...nothing like letting the 1 year old try anything!
- Posted using BlogPress from my iPad
I feel like I should start all my recent posts that way!
As you can imagine from no recent posts, my recovery period this time was pretty tough. A solid week of exhaustion - a lot of time in bed - it pretty much sucked. Midweek Kelly brought a chair to our bedroom which was great. Even though I was tired, at least I was sitting up. Too much time in bed makes one feel worse, I think.
My one complaint is shortness of breath upon basic activities, like walking. No one really knows why it is happening, it is just one of my joyous side effects. It may be the tumors on my lungs, but that is unlikely because even though they are 'innumerable,' they are small. I have learned to walk slowly, take breaks, and hope for someplace to sit at the top of a flight of stairs! In a few weeks I am flying to Michigan for my cousin's wedding. I think I am going to need to get to the airport bright and early to have time to get to my plane!
My dad is slowly improving. I finally got to see him yesterday, which was good for my soul as I had not seen him. He was a little confused when my mom and I arrived, but was much better by the time we left. They are working to get him into a rehab facility close to home. I hope that happens because it would be easier to visit him and he would have some stability in terms of the staff, etc.
Today's kid story is about Crosby. On Saturday we were all out by the pool and Kelly jumped off the diving board. Crosby saw him go, and went running for the board. He climbed up and went right to the end of the board...and then (thankfully) decided that was a little to high and climbed down. Until the last moment we thought he was going to go...nothing like letting the 1 year old try anything!
- Posted using BlogPress from my iPad
Saturday, June 29, 2013
Hard Week
I have received a lot of emails, asking how this week has been going. It has been a very hard week.
In terms of my treatment, I have been extraordinarily fatigued. I am very thankful for the help of my mother-in-law and our babysitter, Ellie, since my exhaustion level is extraordinarily high. Otherwise, I am doing well.
My dad had his biopsy on Monday. The first results were negative, but his doctors think maybe the biopsy missed the tumors, so he will get a different kind of biopsy within a week or so. The reason for the delay is that he was transferred to Albany Med last night due to issues with his difribulator. On Monday they are going to take it out. He has an infection they want some antibiotics on hand for, which is why they are waiting until Monday for the surgery. He remains quite weak, but his mental clarity seems to be improving each day, which is good news. I hope soon he has the strength to move from his bed to a chair.
On Thursday our dear friend Cory called us to tell us her husband, Bob, collapsed while at work in Rhode Island. While the hospital tried to save him, our beloved Bob passed away this morning. Bob had a huge personality - self-deprecating, but smart as a whip on those things he loved. He has a beautiful girl, Zada, and foster son, A, whom he doted on. My heart aches for these sweet children, but I know they will remember their dad both from their memories and the stories we tell them of pot luck dinners and game nights we shared. Cory is the most beautiful person - full of hope and light and kindness, and I know these traits are what will help her through this. But I am going to be honest, I am furious she has to go through this. I am angry and sad and heartbroken because she deserves an amazing life - not this. And I know her life will be amazing, but she will always have a hole in it - a hole that should not be there. Not yet.
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In terms of my treatment, I have been extraordinarily fatigued. I am very thankful for the help of my mother-in-law and our babysitter, Ellie, since my exhaustion level is extraordinarily high. Otherwise, I am doing well.
My dad had his biopsy on Monday. The first results were negative, but his doctors think maybe the biopsy missed the tumors, so he will get a different kind of biopsy within a week or so. The reason for the delay is that he was transferred to Albany Med last night due to issues with his difribulator. On Monday they are going to take it out. He has an infection they want some antibiotics on hand for, which is why they are waiting until Monday for the surgery. He remains quite weak, but his mental clarity seems to be improving each day, which is good news. I hope soon he has the strength to move from his bed to a chair.
On Thursday our dear friend Cory called us to tell us her husband, Bob, collapsed while at work in Rhode Island. While the hospital tried to save him, our beloved Bob passed away this morning. Bob had a huge personality - self-deprecating, but smart as a whip on those things he loved. He has a beautiful girl, Zada, and foster son, A, whom he doted on. My heart aches for these sweet children, but I know they will remember their dad both from their memories and the stories we tell them of pot luck dinners and game nights we shared. Cory is the most beautiful person - full of hope and light and kindness, and I know these traits are what will help her through this. But I am going to be honest, I am furious she has to go through this. I am angry and sad and heartbroken because she deserves an amazing life - not this. And I know her life will be amazing, but she will always have a hole in it - a hole that should not be there. Not yet.
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Sunday, June 23, 2013
News
I have so much to write about: Father's Day, the incredible spaghetti benefit, the wild and crazy kiddos, and a health update. But, today I would like to ask you all for your prayers for my dad.
For the past three weeks my dad has been becoming weaker and weaker for no known reason. This morning he was transported to the hospital via ambulance because he was so weak. He has been admitted to the hospital and they are trying to determine what is going on. He had a great deal of blood work and a PET scan last week and we are hopeful when his oncologist reviews the results tomorrow, there will be a clear direction of treatment.
I had a pretty saucy chat with God last week. The gist being to leave my mom and dad alone. They have been through enough and have more than enough on their plates. I think God appreciates my directness. At least I hope so.
For the past three weeks my dad has been becoming weaker and weaker for no known reason. This morning he was transported to the hospital via ambulance because he was so weak. He has been admitted to the hospital and they are trying to determine what is going on. He had a great deal of blood work and a PET scan last week and we are hopeful when his oncologist reviews the results tomorrow, there will be a clear direction of treatment.
I had a pretty saucy chat with God last week. The gist being to leave my mom and dad alone. They have been through enough and have more than enough on their plates. I think God appreciates my directness. At least I hope so.
Saturday, June 1, 2013
Chemo update
I went through my second round of chemo this week. Due to the holiday, I had four days of treatment rather than five. The hope is that a day less of treatment will help limit the toxic effects I experienced last time. Dr. S is also being proactive by having me get a Neulasta shot (which will prevent my white cell count from plummeting) and I am also using an oral swish my friend Courtney recommended to him. The swish will hopefully limit the mouth ulcers - so far, so good.
That being said day 6 of my last cycle is the day everything went to hell for me, and tomorrow is day 6 for this cycle. Fingers crossed.
I am feeling some severe fatigue this cycle. As in having to sit down and rest after climbing a flight of stairs and only being able to lift Crosby with effort or help. It is frustrating, but I am trying not to be overcome by it.
Last complaint - I had my Sandsosatin shot in my bum and that hurts! I thought I was having severe hip pain again, but I think a large part of it is this shot. Icing it helps, but it hurts for several days and radiates across my back. Grrrr.
Fun story: We opened our pool a couple of weeks ago. It was 57 degrees last week and the older boys readily went in. This week it was up to a balmy 65 degrees and they could not wait to get in! Kyan was practicing his cannonball and Rory would only jump with his goggles. Crosby wisely stayed out of the water with mom and dad. The boys stayed in until they were bluish and happily (for mom and dad) fell asleep quickly tonight.
That being said day 6 of my last cycle is the day everything went to hell for me, and tomorrow is day 6 for this cycle. Fingers crossed.
I am feeling some severe fatigue this cycle. As in having to sit down and rest after climbing a flight of stairs and only being able to lift Crosby with effort or help. It is frustrating, but I am trying not to be overcome by it.
Last complaint - I had my Sandsosatin shot in my bum and that hurts! I thought I was having severe hip pain again, but I think a large part of it is this shot. Icing it helps, but it hurts for several days and radiates across my back. Grrrr.
Fun story: We opened our pool a couple of weeks ago. It was 57 degrees last week and the older boys readily went in. This week it was up to a balmy 65 degrees and they could not wait to get in! Kyan was practicing his cannonball and Rory would only jump with his goggles. Crosby wisely stayed out of the water with mom and dad. The boys stayed in until they were bluish and happily (for mom and dad) fell asleep quickly tonight.
Thursday, May 30, 2013
Spaghetti Meal - 6/9 at Blue Moose Tavern from 12-4
Some of my dear friends, with the support of the Blue Moose Tavern, have organized a spaghetti meal benefit for my family. The information is below. I hope to see many of you there!
Please let me know if you have any questions.
Please let me know if you have any questions.
Monday, May 20, 2013
Is It Working?
I get lots of folks asking if the radiation spheres and chemo are working. I will not really know until the end of June when another scan (MRI or PET) is done. What I can tell you is I think it is working, I think I am in the 25%, I think the large doses of three chemotherapy drugs are worth the side effects. Why? Because I feel the best I have felt in months. I am able to eat regular food; the pain in my back and hips has decreased to the point I can walk, play with the kids, and be 'part' of the household; and mentally I feel better (likely due to decreased meds). I feel like I have my life back.
Tonight I go to have my head shaved. My hair is falling out fast and furious and it is gross! I wear a bandana to keep it contained. I forgot how sensitive my scalp becomes as my hair comes out - it is bizarre how it feels.
My husband's cousin has recently joined me in Stage IV cancer-land after previously being in remission from breast cancer. She has an amazing attitude and I know she will join me in outlier-land. On her Caring Bridge blog she ends most entries with a funny anecdote and I am going to steal her idea (hope you don't mind, Cory!).
Rory is trying to learn knock knock jokes, and practices with Kyan. Yesterday morning during breakfast the bigger boys said knock knock over and over. Then, out of no where little Crosby, who only has about 4 words that he uses, says "knock knock." We all cracked up, Crosby broke into his million-dollar smile, and then proceeded to say knock knock all day. It was adorable.
Tonight I go to have my head shaved. My hair is falling out fast and furious and it is gross! I wear a bandana to keep it contained. I forgot how sensitive my scalp becomes as my hair comes out - it is bizarre how it feels.
My husband's cousin has recently joined me in Stage IV cancer-land after previously being in remission from breast cancer. She has an amazing attitude and I know she will join me in outlier-land. On her Caring Bridge blog she ends most entries with a funny anecdote and I am going to steal her idea (hope you don't mind, Cory!).
Rory is trying to learn knock knock jokes, and practices with Kyan. Yesterday morning during breakfast the bigger boys said knock knock over and over. Then, out of no where little Crosby, who only has about 4 words that he uses, says "knock knock." We all cracked up, Crosby broke into his million-dollar smile, and then proceeded to say knock knock all day. It was adorable.
Monday, May 13, 2013
Stamina
I was going to write a post about stamina tonight, but I am tired. Ironic, eh?
I came home from the hospital on Friday and am doing fairly well, all things considered.
More soon. I'll aim to start and entry earlier so I am not so sleepy.
- Posted using BlogPress from my iPad
I came home from the hospital on Friday and am doing fairly well, all things considered.
More soon. I'll aim to start and entry earlier so I am not so sleepy.
- Posted using BlogPress from my iPad
Wednesday, May 8, 2013
Hospital Stay Number Two
Ah, here I am enjoying the fine accommodations at Tower Two, Room 21 Glens Falls Hospital. I came in for a routine check Monday morning and by early afternoon was admitted due to the side effects from the chemo. Short version: I cannot eat or drink enough to stay hydrated and be able to take my medications in pill form so I am here receiving IV meds, liquids, and electrolytes as needed. The source of the problem seems to be those nasty mouth ulcers I wrote about over the weekend.
For those of you who remember my last hospital stay, you may be groaning right now since that one was so miserable. This stay could not be more different. I have experienced only fantastic nurses and techs. Many who have sat at chatted with me (even at 3 AM), and all who have gone out of their way to make my stay as positive as possible, while also trying to help me get home as soon as possible.
On Monday night I joked with Kelly that his nights would be easier because he would now just have to take care of the kids! (I asked for a lot of middle of the night crushed ice runs.)
Rory and Kyan have both been to visit me and did really well with the hospital setting. The adjustable bed was a huge hit with them and although they were curious about my accessed port (for those who haven't seen one, it looks a lot like an IV hook up, just in my chest with a clear bandage over it), riding up and down on the bed was more exciting.
I am not sure when I will get out. As Dr. S said (by the by, I have a whole new realm of nicknames I have learned for him up here...), "We did this to you, now let us help fix it."
For those of you who remember my last hospital stay, you may be groaning right now since that one was so miserable. This stay could not be more different. I have experienced only fantastic nurses and techs. Many who have sat at chatted with me (even at 3 AM), and all who have gone out of their way to make my stay as positive as possible, while also trying to help me get home as soon as possible.
On Monday night I joked with Kelly that his nights would be easier because he would now just have to take care of the kids! (I asked for a lot of middle of the night crushed ice runs.)
Rory and Kyan have both been to visit me and did really well with the hospital setting. The adjustable bed was a huge hit with them and although they were curious about my accessed port (for those who haven't seen one, it looks a lot like an IV hook up, just in my chest with a clear bandage over it), riding up and down on the bed was more exciting.
I am not sure when I will get out. As Dr. S said (by the by, I have a whole new realm of nicknames I have learned for him up here...), "We did this to you, now let us help fix it."
Sunday, May 5, 2013
New Treatment
On Monday I started a new round of chemotherapy. Dr. S opted to be aggressive (raise your hand if you are surprised!) and I am receiving three different types of chemo at once. I have one week on treatment, three weeks off, then we go again. In about two months I will get a CT scan to determine both how the chemotherapy is working on the lymph nodes and how the radiation spheres have impacted the tumors in my liver.
[Note: Read the following paragraph when not eating.]
The side effects from this combination are quite different from the other types of chemo I have been on. I am still exhausted, but I also have a combination of acid reflux (which I believe is from the steroids they give me), mouth sores, and wet heaves - which leads to a big old ball of ouch when I try to drink or eat. I am hopeful these side effects pass quickly.
I am also still battling the hip pain. It is driving me nuts. I can't move comfortably and I think you all know I like to be active. After MRIs and x-rays the docs have concluded there is nothing physically wrong and the tumors have not spread to my bones, but there is inflammation - likely from the radiation I had last summer and fall. Unfortunately because I am on a blood thinner I cannot take something like Motrin, so I am on prescription drugs to help me with the pain. And those make me groggy...it is a vicious cycle.
The last bit is that I will lose my hair again. I am okay with it, but I was really liking my short curly style. Now I just have to find my bandanas because my noggin is not fit for baldness! (Don't try to tell me it is...it is bumpy and striped. Yes, striped.)
[Note: Read the following paragraph when not eating.]
The side effects from this combination are quite different from the other types of chemo I have been on. I am still exhausted, but I also have a combination of acid reflux (which I believe is from the steroids they give me), mouth sores, and wet heaves - which leads to a big old ball of ouch when I try to drink or eat. I am hopeful these side effects pass quickly.
I am also still battling the hip pain. It is driving me nuts. I can't move comfortably and I think you all know I like to be active. After MRIs and x-rays the docs have concluded there is nothing physically wrong and the tumors have not spread to my bones, but there is inflammation - likely from the radiation I had last summer and fall. Unfortunately because I am on a blood thinner I cannot take something like Motrin, so I am on prescription drugs to help me with the pain. And those make me groggy...it is a vicious cycle.
The last bit is that I will lose my hair again. I am okay with it, but I was really liking my short curly style. Now I just have to find my bandanas because my noggin is not fit for baldness! (Don't try to tell me it is...it is bumpy and striped. Yes, striped.)
Sunday, April 28, 2013
Home Again
I am back home as of Wednesday, which I think has done me a world of good. It is great to be back with my crazy kiddos and crazier hubby. While I was away Crosby learned to run and climb, Kyan seemed to grow a few inches, and Rory's articulation seemed to greatly improve. Kelly seemed to have lost a little more hair...
On Wednesday I spoke with Lauren, the PA who works with Dr. S, about my most recent PET scan. It shows stability in both the lymph node tumors and liver tumors. This is great news considering that for the past 10 weeks the tumors in my lymph nodes have received no treatment. I expected to hear that they had spread and/or grown larger, but thankfully they opted to behave.
Tomorrow I head to the cancer center where the plan is for me to start chemotherapy. I am not sure if that will happen. I still have a great deal of nausea and am continuing to lose weight. I would like to delay a week or so to give me time to get my appetite and energy back, but the chemo may also help me feel better.
What other medical news is there? I went for an MRI of my hips Friday as they are still trying to determine why I have such pain standing and walking. I may not have told you all about that... Basically for the past 6 weeks I have not been able to stand or walk for more than 5-15 minutes without severe pelvic pain. I thought it was due to my lower activity level (which it may well be), but now I cannot increase my activity level because of the pain. I am hopeful that the MRI gives a clear cause for the pain, and a solution, such as x-ray guided cortisone shots, can be used to solve the problem.
So thankful for good insurance...
- Posted using BlogPress from my iPad
On Wednesday I spoke with Lauren, the PA who works with Dr. S, about my most recent PET scan. It shows stability in both the lymph node tumors and liver tumors. This is great news considering that for the past 10 weeks the tumors in my lymph nodes have received no treatment. I expected to hear that they had spread and/or grown larger, but thankfully they opted to behave.
Tomorrow I head to the cancer center where the plan is for me to start chemotherapy. I am not sure if that will happen. I still have a great deal of nausea and am continuing to lose weight. I would like to delay a week or so to give me time to get my appetite and energy back, but the chemo may also help me feel better.
What other medical news is there? I went for an MRI of my hips Friday as they are still trying to determine why I have such pain standing and walking. I may not have told you all about that... Basically for the past 6 weeks I have not been able to stand or walk for more than 5-15 minutes without severe pelvic pain. I thought it was due to my lower activity level (which it may well be), but now I cannot increase my activity level because of the pain. I am hopeful that the MRI gives a clear cause for the pain, and a solution, such as x-ray guided cortisone shots, can be used to solve the problem.
So thankful for good insurance...
- Posted using BlogPress from my iPad
Sunday, April 21, 2013
Accidental Withdrawal
Let me preface this story by saying that I have always had great respect for those who have beaten their addictions. I write this with a humorous edge because this event was caused by me being an idiot. Please take no offense.
I woke up Tuesday around 5AM feeling great. Well, great for me. Great like I was a little nauseated, but the pain wasn't too bad, so I decided to take two Tylenol instead of my Vicodin. Went through my day Tuesday without a problem. Nothing of note...lounging around, willing the radioactive spheres to do their work, marking up the LL Bean catalog with pants to order since all my pants fall down, very exciting stuff. Then 6:30PM hit. Suddenly all I could think about was taking a Vicodin. I mean, it was the only thing I could think about. I stared at my drug bag but mentally I knew I didn't need it for pain so I shouldn't take it. Then, and I don't know how it was possible, but I started thinking about taking a pill even more. And more. And the anxiety set in.
At this point I should note ~ I have been on Vicodin fairly steadily since December. That is why I don't drive (unless I am off it) and why I almost always have help at the house with the boys. I take very low doses and always as prescribed (it is the goody-two shoes in me). But at this point, my body is used to the Vicodin, even at the low dose.
Back to the tale...I chatted with my mom, a former nurse, and asked her if she thought it was possible I was going through withdrawal. She thought it was likely due to the amount of time I had been on the med. She told me to take a Vicodin. I said no. I didn't need it for pain and taking it (given my mental state at the time) seemed like admitting I was addicted to the pills.
Tuesday night was long. Restless legs, hot/cold spells, anxiety, stomach cramps. I texted with a friend whose husband has been through his own cancer battle ~ only to learn he was hospitalized to wean off his meds. Her advice: take the Vicodin. I still didn't take it.
At 8AM Wednesday morning I called the nurse at the cancer center. CRAP....she was not in until 8:30. Curled up into a little ball and called at 8:31 (I had to show a little restraint). Her voicemail picked up and I left a desperate, slightly crazed message for her. She called me right back and had me take a med I had on hand to calm me down a little. Then, after a few phone calls back and forth the decision was for me to take the Vicodin. I felt better within 30 minutes.
I really should have listened to my mother.
I woke up Tuesday around 5AM feeling great. Well, great for me. Great like I was a little nauseated, but the pain wasn't too bad, so I decided to take two Tylenol instead of my Vicodin. Went through my day Tuesday without a problem. Nothing of note...lounging around, willing the radioactive spheres to do their work, marking up the LL Bean catalog with pants to order since all my pants fall down, very exciting stuff. Then 6:30PM hit. Suddenly all I could think about was taking a Vicodin. I mean, it was the only thing I could think about. I stared at my drug bag but mentally I knew I didn't need it for pain so I shouldn't take it. Then, and I don't know how it was possible, but I started thinking about taking a pill even more. And more. And the anxiety set in.
At this point I should note ~ I have been on Vicodin fairly steadily since December. That is why I don't drive (unless I am off it) and why I almost always have help at the house with the boys. I take very low doses and always as prescribed (it is the goody-two shoes in me). But at this point, my body is used to the Vicodin, even at the low dose.
Back to the tale...I chatted with my mom, a former nurse, and asked her if she thought it was possible I was going through withdrawal. She thought it was likely due to the amount of time I had been on the med. She told me to take a Vicodin. I said no. I didn't need it for pain and taking it (given my mental state at the time) seemed like admitting I was addicted to the pills.
Tuesday night was long. Restless legs, hot/cold spells, anxiety, stomach cramps. I texted with a friend whose husband has been through his own cancer battle ~ only to learn he was hospitalized to wean off his meds. Her advice: take the Vicodin. I still didn't take it.
At 8AM Wednesday morning I called the nurse at the cancer center. CRAP....she was not in until 8:30. Curled up into a little ball and called at 8:31 (I had to show a little restraint). Her voicemail picked up and I left a desperate, slightly crazed message for her. She called me right back and had me take a med I had on hand to calm me down a little. Then, after a few phone calls back and forth the decision was for me to take the Vicodin. I felt better within 30 minutes.
I really should have listened to my mother.
Saturday, April 13, 2013
Treasure
Kelly makes breakfast on the weekends. For me a "weekend" breakfast used to mean instant oatmeal or if I was really living it up, an egg. Somewhere along the way, Kelly started making breakfast. Eggs and toast; eggs and cinnamon rolls; pancakes, sausage, and fruit. My children think such breakfasts are normal. It is Saturday: bring on the french toast, bacon, and freshly made orange juice. Weekend breakfast is part of our routine, so imagine last weekend when Rory bit into his apple, yelped, and started crying.
The culprit was his first loose tooth. He was not impressed. It hurt. And then it stopped hurting and he stopped wiggling it and I thought: "Yes! If he is not interested in it, then maybe it will take a few weeks to fall out. That happened to our friends' daughter. I won't miss it."
But just in case, this week my dad picked up a gold dollar coin at the bank for me. (What is this $10 a tooth junk? It is the tooth fairy...isn't she supposed to leave coins or trinkets? And $10 for a tooth? Don't even get me started more than I already have...) I told Kelly where the tooth box the dentist gave Rory was most likely to be found and handed over the coin.
I didn't think much of it after I left for my procedure Wednesday. The tooth was never mentioned when I spoke to Rory or had updates from the grown ups, and it slipped my mind. Then, this afternoon Kelly sent me a text of Rory's mouth, wide open, with a gaping hole where his wiggly tooth had been. I called him and he told me his tooth had "broken" off and we debated about what the tooth fairy might bring. He is hoping for treasure...I think he'll be happy.
I was sitting here this evening moping about what I am missing ~ weekend breakfasts and bloody teeth falling to the floor and realized I need to heed my own advice ~ if you can do nothing to change something, let it go, refocus your energy. I am off to try to focus less on what I am missing, and more on treasures I can savor while I am away.
The culprit was his first loose tooth. He was not impressed. It hurt. And then it stopped hurting and he stopped wiggling it and I thought: "Yes! If he is not interested in it, then maybe it will take a few weeks to fall out. That happened to our friends' daughter. I won't miss it."
But just in case, this week my dad picked up a gold dollar coin at the bank for me. (What is this $10 a tooth junk? It is the tooth fairy...isn't she supposed to leave coins or trinkets? And $10 for a tooth? Don't even get me started more than I already have...) I told Kelly where the tooth box the dentist gave Rory was most likely to be found and handed over the coin.
I didn't think much of it after I left for my procedure Wednesday. The tooth was never mentioned when I spoke to Rory or had updates from the grown ups, and it slipped my mind. Then, this afternoon Kelly sent me a text of Rory's mouth, wide open, with a gaping hole where his wiggly tooth had been. I called him and he told me his tooth had "broken" off and we debated about what the tooth fairy might bring. He is hoping for treasure...I think he'll be happy.
I was sitting here this evening moping about what I am missing ~ weekend breakfasts and bloody teeth falling to the floor and realized I need to heed my own advice ~ if you can do nothing to change something, let it go, refocus your energy. I am off to try to focus less on what I am missing, and more on treasures I can savor while I am away.
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