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!
Monday, March 25, 2013
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.
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