I had been looking forward to my week “off” of the infusion chemo. What a weekend we ended up having! Thursday afternoon, April 27, I got very short of breath. Headed to the doc who took one look at me and had the nurses wheel me to the ER. Fortunately, we had friends on call at the Alleghany ER so that made things a bit easier. Off the the CT scanner I went and sure enough, I had a large clot that stretched from my right lung, across the middle to my left lung. Guess it was pretty big since they called it a “submassive saddle PE”. Great. The good news was that I was relatively stable and breathing well on room air. If I were to become less stable, the local ICU could not provide the anti clotting treatment I would need so we decided to give me a dose of blood thinner and ship me off to the surgical ICU at Lewis Gale in Roanoke.
Jim and Jenna packed for a few nights and followed the ambulance to Lewis Gale. Turned out visiting hours were really restricted. Only the first 15 min of every even hour. After getting me settled, they checked in to a hotel across the street. I spent a relatively uneventful night in the surgical ICU followed by morning testing which found my heart to be doing well but clots in both legs.
By 9:30 Friday morning the interventional radiologist was placing an IVC filter that is meant to catch clots before they can travel to the lungs. That part went really smoothly. Worst of it for me was that I needed to stay on my back for hours afterward. I was able to move to a regular floor that evening and was feeling much better. By then I could walk to the bathroom with only minor shortness of breath.
Got to come home on Saturday evening. Now I get to give myself blood thinner injections twice day. I am grateful that things went smoothly and turned out well. Going to take a while to physically recover my stamina but I’ve started with laps up and down the front walk reminding myself that at least I’m moving. I know Jim and Jenna used my texts lists to get the word out. Thanks for all the prayers and encouragement! It was a scary time.
Wednesday, May 19, 2010
Saturday, April 24, 2010
She's back!
I’ve been laying low for a while. It’s really taken time to recover from the experimental drug. Now that I’m feeling better, I appreciate how knocked down I’ve been. Perhaps I can finally spend less time on the couch and more time out walking! Shari, Jenna and Brent have been very patient with my walks which have been more like strolls. Plus Shari has a great swing in her back yard. Very therapeutic to sit by the woods. It’s nice to feel my energy slowing building back up.
The treatment for the past three weeks has been a daily oral chemo called Tarceva and the weekly gemcitabine infusion. It’s been nice to drive 10 min (instead of 3 ½ hrs) to the local hospital for MD visits and gem. Next week will be my week off for infusion. No week off for the oral. For those of you curious about side effects, I still have my hair : ) however the Tarceva is known for it's skin side effects. Now if you know me at all, you know a skin side effect has my name written all over it. So, it's a full face of an acne like rash for me! The encouragement from the Doc is, "oh, you want to have that reaction". When I think of how much money I spent on accutane thirty years ago.......
We’ll run the same drill through May and return to Duke for the next set of scans and follow up on the 24th and 25th. A decision to continue this course or move on to something else will be made based on the scans.
May is going to be a busy month. Jenna turns 20 on the 4th! A special decade birthday that we’ll celebrate by going to Virginia Beach so she and Jim can go diving together Memorial Day Sat and Sun. What a great excuse to spend the weekend with Don and Molly! Before that we’ll be in Fairfax on Friday May 14 for Luke’s graduation from George Mason. He’s not quite finished but will be by the end of the summer so he’s allowed to “walk” anyway.
Might as well share Brent’s latest news. He has been accepted to JMU for the fall! He has been working at the Homestead and taking a full schedule at the local junior college for the past 2 years. He’s excited to move on and plans to be in the Integrated Systems and Technology Program.
Thanks for all of the continued prayers and encouragement!
The treatment for the past three weeks has been a daily oral chemo called Tarceva and the weekly gemcitabine infusion. It’s been nice to drive 10 min (instead of 3 ½ hrs) to the local hospital for MD visits and gem. Next week will be my week off for infusion. No week off for the oral. For those of you curious about side effects, I still have my hair : ) however the Tarceva is known for it's skin side effects. Now if you know me at all, you know a skin side effect has my name written all over it. So, it's a full face of an acne like rash for me! The encouragement from the Doc is, "oh, you want to have that reaction". When I think of how much money I spent on accutane thirty years ago.......
We’ll run the same drill through May and return to Duke for the next set of scans and follow up on the 24th and 25th. A decision to continue this course or move on to something else will be made based on the scans.
May is going to be a busy month. Jenna turns 20 on the 4th! A special decade birthday that we’ll celebrate by going to Virginia Beach so she and Jim can go diving together Memorial Day Sat and Sun. What a great excuse to spend the weekend with Don and Molly! Before that we’ll be in Fairfax on Friday May 14 for Luke’s graduation from George Mason. He’s not quite finished but will be by the end of the summer so he’s allowed to “walk” anyway.
Might as well share Brent’s latest news. He has been accepted to JMU for the fall! He has been working at the Homestead and taking a full schedule at the local junior college for the past 2 years. He’s excited to move on and plans to be in the Integrated Systems and Technology Program.
Thanks for all of the continued prayers and encouragement!
Sunday, March 28, 2010
Rough week, new plans
Well, I’ve been out of touch for a while due to a rough week crashing from the experimental drug. Spent time and effort building me back up for the Duke appointment on the 23rd. Although I had improved, my platelets did not rebound enough for me to stay in the study. No more Stealth Bomber /TH 302 for me. We felt blindsided by the news, stunned. Thankfully Jenna was calm and rational and much better at processing the info than I was. I was treated with gem and given recommendations for the next 8 weeks of treatment.
The Duke doc and my local doc (Dr. K) have agreed that the next step is to continue with gem infusions here, add a daily oral drug and reassess in two months. I’ll remain in the Duke loop for follow up testing and consultation which keeps multiple options open or on the horizon.
I met with Dr. K and the treatment staff Friday . This coming week would have been my week off anyway so I’ll get some time to recover, eat, gain a bit, build some strength. Plan is to start the new oral drug on the 4th and resume weekly gem on the 7th.
Needless to say this has really challenged me. I am in the process of getting myself straight with a new plan and moving forward. As I get a better handle on the new details, I’ll get some more news out.
Thanks for all of the birthday wishes that came my way. Had a great birthday weekend with friends and family. Thank goodness for old friends who always know just what you need.
I appreciate all the support and prayers you continue to provide for me and my family– you know that’s what sustains me!
The Duke doc and my local doc (Dr. K) have agreed that the next step is to continue with gem infusions here, add a daily oral drug and reassess in two months. I’ll remain in the Duke loop for follow up testing and consultation which keeps multiple options open or on the horizon.
I met with Dr. K and the treatment staff Friday . This coming week would have been my week off anyway so I’ll get some time to recover, eat, gain a bit, build some strength. Plan is to start the new oral drug on the 4th and resume weekly gem on the 7th.
Needless to say this has really challenged me. I am in the process of getting myself straight with a new plan and moving forward. As I get a better handle on the new details, I’ll get some more news out.
Thanks for all of the birthday wishes that came my way. Had a great birthday weekend with friends and family. Thank goodness for old friends who always know just what you need.
I appreciate all the support and prayers you continue to provide for me and my family– you know that’s what sustains me!
Wednesday, March 10, 2010
GREAT NEWS
I heard back from my protocol nurse today after posting my last update. The additional review of the CT scans has been completed and here is what her email said...."I got your CT scan rereads--and it shows stable disease. No change AT ALL in the measurement totals! I thought that might give you some peace of mind."
Remember that no change is what they were looking for. After 2 rounds they expect no improvement and hope for no progression. That goal has been acheived and worth some celebrating! Time for some cheering, praying, drinking, dancing, or whatever floats your boat.
Remember that no change is what they were looking for. After 2 rounds they expect no improvement and hope for no progression. That goal has been acheived and worth some celebrating! Time for some cheering, praying, drinking, dancing, or whatever floats your boat.
I certainly have been slacking with this blog. Third treatment and week off for round 2 are behind us. Anxiety was running high on Sunday night as Jim and I prepared to drive down on Monday (8th) to have all the labs and restaging scans done. Testing was finished by 3:30 or so and we headed to Leila’s. Enjoyed our weekly Thai food and visit with Leila, Maura and Jett. Jim and Maura got to see each other again. Pretty sure they last met at our wedding 25 yrs ago! It was such a beautiful day. Maura and I took Jett for a walk after dinner and it felt great to move around after all that sitting and stress.
Tuesday morning we met with the protocol nurse and an MD we had not seen before due to Dr. Blobe being out of town. There are 3 areas they look at for status/progress. Clinical status (labs, how I’m feeling and doing), scans, and tumor marker. Clinically I’m told that I’m doing fine. A bit more fatigued, at times more appetite than others, but overall doing as well as expected. The initial reading on the CT scans is that the main tumor and mets seem stable with no new growths. The scans will be more closely scrutinized to directly compare selected lesions from this study to the first study there on Jan 5 with results at our appointment next week. The tumor marker is another story. It is high. Well, not just high, it has tripled. We were devastated. Doc says hey, we have 2 out of 3, we’re moving forward with treatment.
We pick up some lunch and head to the treatment room for the first session of round three. Jim gets to meet Kim and see how all the treatment stuff works. The Benadryl I get before the stealth bomber drug always makes me sleepy so I’m not the best company once that hits. Treatment and the ride home are smooth sailing.
It’s spring break so Luke is home and Brent isn’t working so it’s great that all three kids are there when we arrive. Jenna reminds us that Dr. Blobe has said more than once the criteria he places the least emphasis on is the tumor marker. I had forgotten that and it softens the blow a bit. I still wonder what he’ll say when we see him next week. We have a few things to do in the meantime including celebrating Luke’s birthday today.
So, let’s remind the stealth bomber and gemcitabine to get to melting these tumors, direct some prayer and energy at that damn marker, bake a birthday cake and get to the Y!
Tuesday morning we met with the protocol nurse and an MD we had not seen before due to Dr. Blobe being out of town. There are 3 areas they look at for status/progress. Clinical status (labs, how I’m feeling and doing), scans, and tumor marker. Clinically I’m told that I’m doing fine. A bit more fatigued, at times more appetite than others, but overall doing as well as expected. The initial reading on the CT scans is that the main tumor and mets seem stable with no new growths. The scans will be more closely scrutinized to directly compare selected lesions from this study to the first study there on Jan 5 with results at our appointment next week. The tumor marker is another story. It is high. Well, not just high, it has tripled. We were devastated. Doc says hey, we have 2 out of 3, we’re moving forward with treatment.
We pick up some lunch and head to the treatment room for the first session of round three. Jim gets to meet Kim and see how all the treatment stuff works. The Benadryl I get before the stealth bomber drug always makes me sleepy so I’m not the best company once that hits. Treatment and the ride home are smooth sailing.
It’s spring break so Luke is home and Brent isn’t working so it’s great that all three kids are there when we arrive. Jenna reminds us that Dr. Blobe has said more than once the criteria he places the least emphasis on is the tumor marker. I had forgotten that and it softens the blow a bit. I still wonder what he’ll say when we see him next week. We have a few things to do in the meantime including celebrating Luke’s birthday today.
So, let’s remind the stealth bomber and gemcitabine to get to melting these tumors, direct some prayer and energy at that damn marker, bake a birthday cake and get to the Y!
Monday, February 22, 2010
Round 2, treatment 2, new homework
Figured I should get last week’s info posted before Jenna and I leave today for the last treatment of round 2. Last week we had the great pleasure (not!) of driving through weather once again. Had a very exciting start by getting stuck in a snow bank as we made the first turn off of our hill. Fortunately some very kind folks stopped and got us pushed out. The weather reports sounded like once we got south of Roanoke, we would lose the snow and perhaps have just rain. The rest of the drive was nicely uneventful.
We arrived at Leila’s and enjoyed a girls night with both Maura and Michele. For the non family folks reading this, Michele is Leila’s daughter who lives in Atlanta. She had been in town spending the weekend with girlfriends and stayed on to hang out with us and be my chemo buddy. We all got to chat, eat Thai food and pet Jett when she’d let us. I was the party pooper who went to bed early since I’d been much more tired this past week.
Michele and I headed to Duke for labs and chemo. Turns out the nurses were not very pleased to realize I’d lost almost 10 pounds since starting there. I am a bit happy to be 10 pounds lighter however the doc has been preaching all along that this is not the time to be losing weight. While I’m in the treatment room, the nutritionist comes to pay me a visit. Good thing Michele is there to help ask questions and take notes. I had been given Benadryl prior to the TH302/stealth bomber due to the rash I had for a day or two after the prior treatment. Between the Benadryl and increased fatigue, it was a challenge to keep my eyes open and process all the new info. Lots of good suggestions re: foods, more frequent eating, supplements, shakes, smoothies, protein counts and lofty calorie goals. I’m going to have my work cut out for me!
After all the treatments, Jenna and I head home and are amazed to spend some time driving on dry roads, under blue sky. She was able to shop before picking me up so we have some new foods to try this week. We spend time discussing plans for changing and adding to my diet.
As the week progressed, it seems like the food changes helped. I’m not as fatigued and feel a bit better than the prior week despite ongoing nausea and belly upset. It is a challenge to think about taking in more calories, preparing higher calorie meals and adding in desserts. Sure would be nice if the reason for this was something more pleasant than chemo!
We arrived at Leila’s and enjoyed a girls night with both Maura and Michele. For the non family folks reading this, Michele is Leila’s daughter who lives in Atlanta. She had been in town spending the weekend with girlfriends and stayed on to hang out with us and be my chemo buddy. We all got to chat, eat Thai food and pet Jett when she’d let us. I was the party pooper who went to bed early since I’d been much more tired this past week.
Michele and I headed to Duke for labs and chemo. Turns out the nurses were not very pleased to realize I’d lost almost 10 pounds since starting there. I am a bit happy to be 10 pounds lighter however the doc has been preaching all along that this is not the time to be losing weight. While I’m in the treatment room, the nutritionist comes to pay me a visit. Good thing Michele is there to help ask questions and take notes. I had been given Benadryl prior to the TH302/stealth bomber due to the rash I had for a day or two after the prior treatment. Between the Benadryl and increased fatigue, it was a challenge to keep my eyes open and process all the new info. Lots of good suggestions re: foods, more frequent eating, supplements, shakes, smoothies, protein counts and lofty calorie goals. I’m going to have my work cut out for me!
After all the treatments, Jenna and I head home and are amazed to spend some time driving on dry roads, under blue sky. She was able to shop before picking me up so we have some new foods to try this week. We spend time discussing plans for changing and adding to my diet.
As the week progressed, it seems like the food changes helped. I’m not as fatigued and feel a bit better than the prior week despite ongoing nausea and belly upset. It is a challenge to think about taking in more calories, preparing higher calorie meals and adding in desserts. Sure would be nice if the reason for this was something more pleasant than chemo!
Monday, February 15, 2010
Monday Feb 8 we get back in the car. By now we have had nothing but snow, snow, snow with more predicted. When we leave, we’re not sure that we’ll be able to drive back on the 9th. Treatment does not start as early as we’d hoped due some lab delays. All my labs have rebounded nicely and we finally get the treatment going. When we’re finished it’s raining in NC and we hear that it has been snowing at home. The first half hour or so of the drive goes well and then we get in to some fairly steady rain. This is the second drive that Jenna has made through challenging weather. When we’re about an hour from home, we hear that one of the neighbors has not been able to make it up the last bit of our hill. The thought of walking doesn’t sound like too much fun. Jim calls another neighbor with 4 wheel drive who would be happy to pick us up if we need to leave our car in town.
We do great until we start working our way up from behind the grocery store and end up in a snow bank. The last few minutes were exciting but we made it. We were VERY glad to be home.
Everyone always asks about how the side effects are going. One thing I can say is that they are not consistent. Had my usual good Wednesday with almost no nausea until late on Saturday and into Sunday but LOTS of fatigue. Some achy “gem flu” stuff off and on. I have definitely worn out the couches the past few days!
The other big question is when will I be retested. Scans and blood work are done at the end of every other session which means at the end of this round. Instead of going down on my week off, we have scheduled the lab work and CTs for Monday afternoon March 8 prior to seeing the doctor and beginning the third treatment round on March 9. Jim will be going down for that trip since we’ll get our update on the
9th when we see Dr. Blobe.
We do great until we start working our way up from behind the grocery store and end up in a snow bank. The last few minutes were exciting but we made it. We were VERY glad to be home.
Everyone always asks about how the side effects are going. One thing I can say is that they are not consistent. Had my usual good Wednesday with almost no nausea until late on Saturday and into Sunday but LOTS of fatigue. Some achy “gem flu” stuff off and on. I have definitely worn out the couches the past few days!
The other big question is when will I be retested. Scans and blood work are done at the end of every other session which means at the end of this round. Instead of going down on my week off, we have scheduled the lab work and CTs for Monday afternoon March 8 prior to seeing the doctor and beginning the third treatment round on March 9. Jim will be going down for that trip since we’ll get our update on the
9th when we see Dr. Blobe.
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