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
Wednesday, July 31, 2013
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.
- Posted using BlogPress from my iPad
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.
- Posted using BlogPress from my iPad
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.
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