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.
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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...
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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...
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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.
Tuesday, April 9, 2013
Stalkers
So many people have asked me to post to ease their concerned minds. With some of the meds I am on, I find it difficult to write, but I will give it a shot to post at least weekly.
Tonight will just be some health highlights. But I will write about the kids soon. They are amazing.
*Today I had my second set of cortisone shots for my hips. The first showed some improvement, but more is needed to get to a comfortable spot.
*Tomorrow I have an MRI of my cervical spine. I have had some severe low back pain and this is to see if we can find some answers and rule out crappy answers, like tumor activity.
*My decreasing weight is still a problem. I am trying some new meds and alternative suggestions this week. My friend found some ginger candies that work great. Of course, can we find them again? No. If you happen to see any with real ginger in them, could you let me know?
*Wednesday is my last liver procedure. I will go down to Albany in the AM and be there most of the day. Then I will check into the hotel until Saturday and head to my folks' house Saturday afternoon through the 24th.
*On the 19th I have a PET scan to see what is going on inside. It is unlikely there will be much response yet from the sphere treatment, but it will show how the lymph nodes are doing and if there is any additional growth.
*Around April 29 I will start some form of chemo again. Three drugs are on the table. Depending on how I am doing and the PET results, I will get a mix of 2 or 3 of the drugs.p
*And now, a confession...I am back in the Diet Coke and it is oh so good. Typically just one can a day on ice. Ahhhh...
Tonight will just be some health highlights. But I will write about the kids soon. They are amazing.
*Today I had my second set of cortisone shots for my hips. The first showed some improvement, but more is needed to get to a comfortable spot.
*Tomorrow I have an MRI of my cervical spine. I have had some severe low back pain and this is to see if we can find some answers and rule out crappy answers, like tumor activity.
*My decreasing weight is still a problem. I am trying some new meds and alternative suggestions this week. My friend found some ginger candies that work great. Of course, can we find them again? No. If you happen to see any with real ginger in them, could you let me know?
*Wednesday is my last liver procedure. I will go down to Albany in the AM and be there most of the day. Then I will check into the hotel until Saturday and head to my folks' house Saturday afternoon through the 24th.
*On the 19th I have a PET scan to see what is going on inside. It is unlikely there will be much response yet from the sphere treatment, but it will show how the lymph nodes are doing and if there is any additional growth.
*Around April 29 I will start some form of chemo again. Three drugs are on the table. Depending on how I am doing and the PET results, I will get a mix of 2 or 3 of the drugs.p
*And now, a confession...I am back in the Diet Coke and it is oh so good. Typically just one can a day on ice. Ahhhh...
Monday, March 25, 2013
Inching Along
Hi, it is me.
It has been a rough couple of weeks. Low energy, pain in my gut, pain in my hips, difficulty eating...but I am back home with Kelly and my boys and that is wonderful.
This week I will get cortisone shots to try to help the pain in my hips, which is thought to be bursitis. I hope those shots help and then I can start swimming again. Right now it hurts to walk even short distances on flat terrain. It is very frustrating and it would be nice to have this "taken off the table" of issues.
I have also experienced a great deal of fatigue. Not surprising since the SIR spheres are an intense form of radiation. The Tuesday after I had the procedure I had a blood transfusion due to some low blood counts. I was hoping that would help with my energy, but it did not.
The other issue with my energy is that I have lost a fair amount of weight and am having trouble eating. I visited the dietician at the cancer center who advised a few methods to consume more protein. Some are working, some are not. I will see her again this week and we'll go from there. I did have to laugh, I think it was the first time I was told to "eat a low fiber, high fat diet" by a healthcare professional.
Lots of complaining...that is why I haven't been posting. I am not a big fan of whining, plus when I feel good I want to at least hang out with my little boys. I feel like we are inching (centimetering?) towards improvements, and am trying to focus on that.
My next SIR sphere treatment will be April 10. I'll do the same thing I did this time - isolation from the kids for two weeks, then home. I will be glad to have both procedures done. Then, in mid-to-late May the doctors will scan to see how things are looking (shrinking!).
Enough whining for now...fingers crossed these shots work this week and that the radiation spheres are kicking arse on the left side of my liver!
It has been a rough couple of weeks. Low energy, pain in my gut, pain in my hips, difficulty eating...but I am back home with Kelly and my boys and that is wonderful.
This week I will get cortisone shots to try to help the pain in my hips, which is thought to be bursitis. I hope those shots help and then I can start swimming again. Right now it hurts to walk even short distances on flat terrain. It is very frustrating and it would be nice to have this "taken off the table" of issues.
I have also experienced a great deal of fatigue. Not surprising since the SIR spheres are an intense form of radiation. The Tuesday after I had the procedure I had a blood transfusion due to some low blood counts. I was hoping that would help with my energy, but it did not.
The other issue with my energy is that I have lost a fair amount of weight and am having trouble eating. I visited the dietician at the cancer center who advised a few methods to consume more protein. Some are working, some are not. I will see her again this week and we'll go from there. I did have to laugh, I think it was the first time I was told to "eat a low fiber, high fat diet" by a healthcare professional.
Lots of complaining...that is why I haven't been posting. I am not a big fan of whining, plus when I feel good I want to at least hang out with my little boys. I feel like we are inching (centimetering?) towards improvements, and am trying to focus on that.
My next SIR sphere treatment will be April 10. I'll do the same thing I did this time - isolation from the kids for two weeks, then home. I will be glad to have both procedures done. Then, in mid-to-late May the doctors will scan to see how things are looking (shrinking!).
Enough whining for now...fingers crossed these shots work this week and that the radiation spheres are kicking arse on the left side of my liver!
Wednesday, March 6, 2013
Spheres, Day 1
The procedure took 3 hours rather than 1, but the doctors successfully implanted the spheres.
I am now in my hotel - exhausted and sore, but thankful to be here.
More when I feel better. Much love to all. And if you see my boys, give them huge hugs for me!
- Posted using BlogPress from my iPad
I am now in my hotel - exhausted and sore, but thankful to be here.
More when I feel better. Much love to all. And if you see my boys, give them huge hugs for me!
- Posted using BlogPress from my iPad
Friday, February 22, 2013
Who has an extra hepatic artery? This girl!
Leave it to me to be quirky...
Most people have two hepatic (liver) arteries - one to the right lobe, the other to the left. The hepatic angiogram i had last week showed that I have three - one right, two left. The doctors ended up doing a CT angiogram after this discovery and determined which of the two left arteries fed each of the tumors on the left side and made sure only a limited amount of healthy tissue would be impacted by sending the radiation spheres through both arteries.
The hepatic angiogram also showed the radiation "leak" into my lungs from the trial run was 5.5%, which was well within the acceptable range (ideally less than 10%, but must be less than 20%).
So, on March 6 I will have my first procedure to insert the spheres into one lobe of my liver. The downside is I cannot come home for two weeks because the radiation exposure is too much for the kids. The radiation oncologist, Dr. Gibbons, suggested I spend the first few days in a hotel to limit repeated family member/caregiver exposure. Then I will be going to my parents' home for the remaining days.
About 4 to 5 weeks later they will do the other lobe, I will stay away for two weeks again, and hope that this radiation shrinks the tumors in my liver enough that my liver can regain normal function. About two weeks after that I will start chemo again to treat the cancer both in my lymph nodes and the (withering!) liver tumors.
I know following all this medical stuff can be confusing, boring, freaky, etc. Thanks for being willing to keep up with this winding journey.
Most people have two hepatic (liver) arteries - one to the right lobe, the other to the left. The hepatic angiogram i had last week showed that I have three - one right, two left. The doctors ended up doing a CT angiogram after this discovery and determined which of the two left arteries fed each of the tumors on the left side and made sure only a limited amount of healthy tissue would be impacted by sending the radiation spheres through both arteries.
The hepatic angiogram also showed the radiation "leak" into my lungs from the trial run was 5.5%, which was well within the acceptable range (ideally less than 10%, but must be less than 20%).
So, on March 6 I will have my first procedure to insert the spheres into one lobe of my liver. The downside is I cannot come home for two weeks because the radiation exposure is too much for the kids. The radiation oncologist, Dr. Gibbons, suggested I spend the first few days in a hotel to limit repeated family member/caregiver exposure. Then I will be going to my parents' home for the remaining days.
About 4 to 5 weeks later they will do the other lobe, I will stay away for two weeks again, and hope that this radiation shrinks the tumors in my liver enough that my liver can regain normal function. About two weeks after that I will start chemo again to treat the cancer both in my lymph nodes and the (withering!) liver tumors.
I know following all this medical stuff can be confusing, boring, freaky, etc. Thanks for being willing to keep up with this winding journey.
Tuesday, February 12, 2013
Valentine's Day
On Valentine's Day Rory turned five. I can't believe my little Rory Bear is five, because I am pretty sure he was just born a day or two ago.
Rory had a dramatic birth in that he needed an emergency c-section and Kelly was at work an hour away. When I called Kelly I was casual....finish what you are doing, come when you can, it will be fine...because that is what I thought. My mom then called him from her office (she worked on the maternity floor) and told him to get moving. Quickly.
I was fairly calm until they wheeled me into the operating room, sans Kelly. He still wasn't there and everyone kept telling me they were just getting me all set so when he arrived we would be ready to go. So...for those who haven't witnessed a c-section, once they are ready (a) a curtain is raised so you don't actually see the surgery and (b) you can't feel anything below that curtain. Once we reached this point (and still no Kelly) I desperately wanted to yell "hand check" to be sure no scalpels were at work, but instead opted to ask every 47 seconds where Kelly was. In hindsight, hand check probably would have been more entertaining.
Kelly suddenly burst (yes, burst, I am not be dramatic at all...) through the door and according to him, the scalpel went to work before the door shut behind him. Much like the day we were married, an overwhelming sense of calm came over me when I saw him and I knew everything would be okay.
As they were delivering Rory I asked Kelly if we could change his name from Rory Christopher to Rory Kellogg. It felt important to me that Rory's name had a family connection, and Rory sharing his father's name felt right.
I am blessed to have this thoughtful, funny, clever, energetic little boy in my life every day. He has taught me so much about life and love.
And how sometimes, it is best just to go and eat the cake rather than take 25 pictures of the cake and candles.
Thursday, January 31, 2013
Radiation Spheres
The majority of my posts lately have been health-related. So boring! But, here is another one:
I had round 2 of my new chemo on Tuesday. The dosage this time was about 2/3 my previous dosage and I opted to use the patch (definitely helping, though I had a few usage issues which I think is preventing it from being as effective as it could be) to help with the nausea and also had an extra shot of atropine to help keep me from living in the bathroom. I don't have much of an appetite now, but I am able to keep fluids in my system, so that is a very good thing. I am tired, but not completely out of it like I was during round 1. I will have one more round next week and then I will take a break from chemo and I will start a directed treatment for the tumors in my liver.
As you know, the tumors in my liver a growing in size and number. They are now to the point that my liver function is out of the normal range. So, with the help and support of Dr. S., Tuesday afternoon (post chemo) Kelly and I drove down to Albany to meet Dr. Gary Siskin. He is an interventional radiologist and he will be part of a team that injects spheres of radiation into my liver to treat the tumors. The process is very cool, and the geek in me would like to regale you with how it works, but instead I will just tell you the spheres go under the trade names Theraspheres or SIR spheres and if you have insomnia, you can go check them out. (This is a pretty straightforward video of the process: http://www.sirtex.com/us/clinicians/about-sir-spheres-microspheres/mode-of-action/.)
I will go for a hepatic (liver) angiogram and trial run on 2/13. If that is successful ~ they need to be sure only a limited amount of radiation will leave the liver for me to be a candidate ~ then about 3 weeks later I will have the spheres injected into the more diseased lobe of my liver. About a month after than they will repeat the process for the other lobe. The side effects are described as flu-like, but due to the radiation I may not be able to be around the children for a few days (I will meet with the radiation oncologist on 2/14 and at that point learn more about that restriction). Two weeks after the second lobe procedure, I will be able to start chemotherapy again.
I feel good about this. I like the people involved, I like the fact I am on the schedule (no hemming and hawing and discussing with 20 other people), I love the fact it has a high success rate and a low incidence of side effects. Let's get this next phase started!
I had round 2 of my new chemo on Tuesday. The dosage this time was about 2/3 my previous dosage and I opted to use the patch (definitely helping, though I had a few usage issues which I think is preventing it from being as effective as it could be) to help with the nausea and also had an extra shot of atropine to help keep me from living in the bathroom. I don't have much of an appetite now, but I am able to keep fluids in my system, so that is a very good thing. I am tired, but not completely out of it like I was during round 1. I will have one more round next week and then I will take a break from chemo and I will start a directed treatment for the tumors in my liver.
As you know, the tumors in my liver a growing in size and number. They are now to the point that my liver function is out of the normal range. So, with the help and support of Dr. S., Tuesday afternoon (post chemo) Kelly and I drove down to Albany to meet Dr. Gary Siskin. He is an interventional radiologist and he will be part of a team that injects spheres of radiation into my liver to treat the tumors. The process is very cool, and the geek in me would like to regale you with how it works, but instead I will just tell you the spheres go under the trade names Theraspheres or SIR spheres and if you have insomnia, you can go check them out. (This is a pretty straightforward video of the process: http://www.sirtex.com/us/clinicians/about-sir-spheres-microspheres/mode-of-action/.)
I will go for a hepatic (liver) angiogram and trial run on 2/13. If that is successful ~ they need to be sure only a limited amount of radiation will leave the liver for me to be a candidate ~ then about 3 weeks later I will have the spheres injected into the more diseased lobe of my liver. About a month after than they will repeat the process for the other lobe. The side effects are described as flu-like, but due to the radiation I may not be able to be around the children for a few days (I will meet with the radiation oncologist on 2/14 and at that point learn more about that restriction). Two weeks after the second lobe procedure, I will be able to start chemotherapy again.
I feel good about this. I like the people involved, I like the fact I am on the schedule (no hemming and hawing and discussing with 20 other people), I love the fact it has a high success rate and a low incidence of side effects. Let's get this next phase started!
Friday, January 25, 2013
Quick Note
Kelly and I had a good trip to Johns Hopkins. My lead oncologist there reminded me a great deal of Dr. S in terms of his thoughtfulness and responsiveness to our questions. There were a few ideas put forth, but nothing set in stone. When things are ironed out a bit more, we'll talk about them. (No need to drag you all along on a roller coaster ride...especially one that often gets stuck!)
I have not been responding well to chemo - the side effects have sidelined me to the point that I slept 18 hours per day for a few days. My treatment this week was delayed because I was dehydrated and unable to eat. (I have lost about 25 pounds since Christmas. Of course...the one year I don't make losing weight a resolution!!!) I have been going in every other day for IV hydration and on Tuesday I will try chemo again, though at a lower dose. I am also going to try a patch to help with the stomach upset that my friend Courtney swears by - I am hopeful that it will work as well for me as it did for her husband.
I have not been responding well to chemo - the side effects have sidelined me to the point that I slept 18 hours per day for a few days. My treatment this week was delayed because I was dehydrated and unable to eat. (I have lost about 25 pounds since Christmas. Of course...the one year I don't make losing weight a resolution!!!) I have been going in every other day for IV hydration and on Tuesday I will try chemo again, though at a lower dose. I am also going to try a patch to help with the stomach upset that my friend Courtney swears by - I am hopeful that it will work as well for me as it did for her husband.
Sunday, January 20, 2013
Driving Miss Daisy
Turns out the first 24 hours post chemo were not too bad, but since then I have been having a rough time. The pill I started with to keep me from throwing up, caused me to throw up more often than not. The meds to keep my from living on the toilet were a joke. And please, do not offer me anything to eat.
In the midst of this (but without him being aware of the chemo side effects I was going through), Alex scheduled me for a pelvic ultrasound. For a pelvic ultrasound one needs to drink about 32 ounces of fluid 40 minutes before the scan. I willed myself to get it do and keep it down, and then I laid on the table and that was it. I lost it. The techs were so sweet they actually offered to have me come back in a little bit to try again. I passed, saying I would wait until things were sorted out. I figure I can only throw up all over someone's room once per day.
Dr. S changed and/or increased my meds to get me through this. I am showing some slight improvement, but not where I want to be. (Case in point: Kelly had to stop the car on the way home from church so I could throw up on the sidewalk. Yes, I am that classy.) The hardest part is that my head is now in a fog. I just fall asleep mid-conversation, for a long time, and soundly. I now have Kelly drive me places when I am on my meds...I honestly cannot imagine driving myself. If I plan, then I am okay (but run the risk of sneak side effects!) - it is quite a dance I am trying to learn.
Wednesday, January 16, 2013
Why Chemo is Scary
Chemotherapy is scary. Not because you might spend 3 days and nights in the bathroom, have your hair fall out, wake up in cold sweats, have dry eyes, suffer major fatigue, experience sore muscles, not want to eat, or no longer be able to feel your toes or fingers. It is because you don't know which, if any, of the side effects are going to apply to you.
Yesterday I dozed off for the end of my chemo treatment. I woke up and was soaked. My first thought: "I peed my pants!" (Spoiler: I did not.) The first thing I did was check my list of side effects - sure enough sweating was on the list, along with about 20 other possible side effects.
I thought: "This is a first: a side effect and the chemo wasn't even done going in!" When Ruth, my nurse, came in I mentioned it to her and she asked: "...or it is the rubbery chair and 74 degree room?" I think she also kind of wanted to say 'duh,' but she is way too sweet for that. :)
So here I am, 24 hours after my first Irinotecan chemo treatment, faring fairly well. A few minor side effects, but ones I can manage. I like getting one 'cycle' under my belt - then I know the general pattern the treatments will follow, and I can plan around them a little better.
Strong body, weak cancer cells.
- Posted using BlogPress from my iPad
Yesterday I dozed off for the end of my chemo treatment. I woke up and was soaked. My first thought: "I peed my pants!" (Spoiler: I did not.) The first thing I did was check my list of side effects - sure enough sweating was on the list, along with about 20 other possible side effects.
I thought: "This is a first: a side effect and the chemo wasn't even done going in!" When Ruth, my nurse, came in I mentioned it to her and she asked: "...or it is the rubbery chair and 74 degree room?" I think she also kind of wanted to say 'duh,' but she is way too sweet for that. :)
So here I am, 24 hours after my first Irinotecan chemo treatment, faring fairly well. A few minor side effects, but ones I can manage. I like getting one 'cycle' under my belt - then I know the general pattern the treatments will follow, and I can plan around them a little better.
Strong body, weak cancer cells.
- Posted using BlogPress from my iPad
Saturday, January 12, 2013
Tough Days
Ever since my stay in the hospital, I have been having a difficult time. I hadn't been feeling well for a few weeks before being in the hospital, and my hospital stay was a horrible experience and since then I just have not been myself.
I was admitted to the hospital for fluids and meds, in part because I had a horrible stomach bug compounded with severe pain in my abdomen and back. The nurse who admitted me, Chris, was fantastic. He helped me get settled, started my meds, checked in on me, etc. Sadly, he was only my nurse for about 6 hours.
Due to the pain medication I was given, I was not allowed out of bed without an aide. And a reminder: I was in the hospital, in part, for a nasty stomach bug. My first morning I buzzed for someone to come so I could use the bathroom. No one came. I buzzed again 10 minutes later. No one came. After 20 minutes, someone finally came. At that point I was nearly in tears, in massive discomfort, and feeling humiliated over the bathroom. Later that day brought more of the same, my IV pump beeped for 25 minutes before someone came to turn it off (I was fighting a severe headache brought on by one of the pain meds), after I buzzed twice. I asked to take a shower. Four hours later I was brought towels. I asked for a bland diet when I was allowed solids. I was brought the regular meal. Meanwhile, the background noise in the hall was a staff member telling the patient in the room next door that HE WAS NOT ALLOWED TO GET OFF THE COMMODE. Over and over.
And all I could think was that when this gets really bad, when I am really sick...this is where I will have to be? These people are who I need to trust to care for me?
Then came Dr. Chan and all that crap, combined with the exhaustion brought on by some of my meds as well as the pain that stays with me each day, and I must admit to having some really tough days. A cancer survivor I know recently started a blog and part of it is about finding her sunshine. I am really struggling with that of late.
I was admitted to the hospital for fluids and meds, in part because I had a horrible stomach bug compounded with severe pain in my abdomen and back. The nurse who admitted me, Chris, was fantastic. He helped me get settled, started my meds, checked in on me, etc. Sadly, he was only my nurse for about 6 hours.
Due to the pain medication I was given, I was not allowed out of bed without an aide. And a reminder: I was in the hospital, in part, for a nasty stomach bug. My first morning I buzzed for someone to come so I could use the bathroom. No one came. I buzzed again 10 minutes later. No one came. After 20 minutes, someone finally came. At that point I was nearly in tears, in massive discomfort, and feeling humiliated over the bathroom. Later that day brought more of the same, my IV pump beeped for 25 minutes before someone came to turn it off (I was fighting a severe headache brought on by one of the pain meds), after I buzzed twice. I asked to take a shower. Four hours later I was brought towels. I asked for a bland diet when I was allowed solids. I was brought the regular meal. Meanwhile, the background noise in the hall was a staff member telling the patient in the room next door that HE WAS NOT ALLOWED TO GET OFF THE COMMODE. Over and over.
And all I could think was that when this gets really bad, when I am really sick...this is where I will have to be? These people are who I need to trust to care for me?
Then came Dr. Chan and all that crap, combined with the exhaustion brought on by some of my meds as well as the pain that stays with me each day, and I must admit to having some really tough days. A cancer survivor I know recently started a blog and part of it is about finding her sunshine. I am really struggling with that of late.
Thursday, January 10, 2013
Nap time
I had my liver biopsy done this morning and all went well. My side is a bit sore this evening and my head is still a little fuzzy, but all in all I cannot complain. I was aware of the process, but sedated enough that it did not hurt and I willingly allowed the doc (another swimmer, by the way...swimming: the way to meet your dream healthcare team) to place a long needle through my side, repeatedly.
Results will be in early next week.
On Tuesday I start my new chemo. It sounds like the side effects may start during the treatment, so Kelly is going to work from home so he can drive me and be here...just in case. I am eager to get a treatment under my belt so I know what to expect for future treatments.
Then, on 1/22 Kelly and I will go to the liver clinic at Johns Hopkins in Baltimore for their advice/opinion. Working with them has been a terrific experience thus far, and I look forward to meeting everyone there in person.
I am beat...so off to bed I go to try to get some solid sleep. (And convince Kelly to get some sleep too!)
Results will be in early next week.
On Tuesday I start my new chemo. It sounds like the side effects may start during the treatment, so Kelly is going to work from home so he can drive me and be here...just in case. I am eager to get a treatment under my belt so I know what to expect for future treatments.
Then, on 1/22 Kelly and I will go to the liver clinic at Johns Hopkins in Baltimore for their advice/opinion. Working with them has been a terrific experience thus far, and I look forward to meeting everyone there in person.
I am beat...so off to bed I go to try to get some solid sleep. (And convince Kelly to get some sleep too!)
Saturday, January 5, 2013
Next Steps
I have received quite a bit of flack for my lack of blog entry after my last posting. It has been a busy week sorting out what treatment option to pursue next and I have been feeling under the weather.
On Monday Kelly and I went to Boston to meet Dr. Chan. Her recommendation was a chemo combination that showed promise in Europe, but before signing off on that she wanted to talk to Dr. B again.
AUGH.
On Wednesday Dr. Chan called to tell me after talking with Dr. B she was changing her chemo recommendation. Just in case the cancer in the liver is related to the cervical cancer. (Quick refresher: No test I have gone through has ever shown they are related. In fact, every test has indicated they are two separate processes.)
I emailed Dr. S for his advice, and he felt the chemo change was okay, but he did wonder if an embolization would be an option worth pursuing (Dr. Chan was not in favor of an embolization).
My gut is telling me I need to pursue the embolization.
So...long story short:
1) On Thursday I will have another liver biopsy; in part to do another test to determine (once and for all...I hope) if the cervical cancer and tumors in my liver are connected.
2) I will start chemotherapy (irinotecan) soon. The side effects sound similar to what I have been through before. I am not 100% sure of the treatment schedule yet.
3) I am in conversations with the liver center at Johns Hopkins to get a second opinion to Dr. Chan's opinion. I will be talking with them again early in the week.
I am flying by the seat of my pants here. I am following my gut, and am grateful for the solid, clear counsel of Dr. S.
On Monday Kelly and I went to Boston to meet Dr. Chan. Her recommendation was a chemo combination that showed promise in Europe, but before signing off on that she wanted to talk to Dr. B again.
AUGH.
On Wednesday Dr. Chan called to tell me after talking with Dr. B she was changing her chemo recommendation. Just in case the cancer in the liver is related to the cervical cancer. (Quick refresher: No test I have gone through has ever shown they are related. In fact, every test has indicated they are two separate processes.)
I emailed Dr. S for his advice, and he felt the chemo change was okay, but he did wonder if an embolization would be an option worth pursuing (Dr. Chan was not in favor of an embolization).
My gut is telling me I need to pursue the embolization.
So...long story short:
1) On Thursday I will have another liver biopsy; in part to do another test to determine (once and for all...I hope) if the cervical cancer and tumors in my liver are connected.
2) I will start chemotherapy (irinotecan) soon. The side effects sound similar to what I have been through before. I am not 100% sure of the treatment schedule yet.
3) I am in conversations with the liver center at Johns Hopkins to get a second opinion to Dr. Chan's opinion. I will be talking with them again early in the week.
I am flying by the seat of my pants here. I am following my gut, and am grateful for the solid, clear counsel of Dr. S.
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