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!
Monday, February 22, 2010
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.
a weekend away, a week off
Jim and I spent the last weekend in January snowbound at the Hotel Roanoke attending the Episcopal Disocese Council weekend. We figured I could crash in the hotel room as easily as at our house. Since we’re the delegates for our little church, it gave Jim the opportunity to attend the business and breakout sessions. It was wonderful to be away and be cared for by Jim and Kevin and Lisa. Being there was good for both of us and definitely the refreshment that my soul needed.
My goal was to attend the services, meals and keynote address. I accomplished that, but just barely. I spent the opening Eucharist laying down in the pew but hey, I was there. Probably the only one praying and singing while on their side but all that mattered was being there. Ended up in the same position at the closing service!
The following week was a non treatment week however Jenna and I still needed to drive down to NC so I could have blood work and be seen by Dr. Blobe. It was nice to recover some during the off week. Jenna drove us hard : ) She is on a mission to do some serious reorganizing around here and we are off to a good start. Purged the pantry, a storage closet, some kitchen cabinets and the basement bookshelves. We had a great time getting rid of stuff and already have plans for the next off week. She has had many offers from folks wanting her to come clean their closets!
In the mean time we have let a few more people know about our situation. One friend commented that our knowledge must be a real asset for us. It made me realize that is not necessarily true. I know just enough to make myself crazy. I have decided and am now praying that my limited knowledge not get in my way and work against me. I have been allowing myself to jump to unreasonable (and always bad!) conclusions when faced with new information or symptoms. Working on this has really reduced the anxiety I had been feeling which of course helps me to feel better overall.
My goal was to attend the services, meals and keynote address. I accomplished that, but just barely. I spent the opening Eucharist laying down in the pew but hey, I was there. Probably the only one praying and singing while on their side but all that mattered was being there. Ended up in the same position at the closing service!
The following week was a non treatment week however Jenna and I still needed to drive down to NC so I could have blood work and be seen by Dr. Blobe. It was nice to recover some during the off week. Jenna drove us hard : ) She is on a mission to do some serious reorganizing around here and we are off to a good start. Purged the pantry, a storage closet, some kitchen cabinets and the basement bookshelves. We had a great time getting rid of stuff and already have plans for the next off week. She has had many offers from folks wanting her to come clean their closets!
In the mean time we have let a few more people know about our situation. One friend commented that our knowledge must be a real asset for us. It made me realize that is not necessarily true. I know just enough to make myself crazy. I have decided and am now praying that my limited knowledge not get in my way and work against me. I have been allowing myself to jump to unreasonable (and always bad!) conclusions when faced with new information or symptoms. Working on this has really reduced the anxiety I had been feeling which of course helps me to feel better overall.
Friday, January 29, 2010
Third Treatment
Off we go again on Monday. Maura and Jett arrive shortly after we do and this time Aunt Leila has a yummy dinner waiting for us. After dinner Jenna, Maura, and I take Jett for a walk. I really needed to be moving. Honestly, I’d been more anxious the past few days. Perhaps a combination of having increased ooky tummy stuff, more frequent fatigue, less physical activity, and the creeping in of more negative thoughts. After meeting with Paula, Dr. Vlahovic, and Kim on Tuesday, plans are in place to address all of this. Great advice from a variety of wise friends and the Streams in the Dessert daily devotional readings, and I’ve already made great strides regrouping those pesky negative thoughts.
Speaking of Tuesday…labs present a bit of a curve, my glucose is high. We meet Dr. Vlahovic who says, you feel fine, don’t you? This is NOT going to stop you from being treated, “Paula, call the drug company!” As you can imagine, Jenna and I immediately like this woman. This is quickly resolved and Dr. V thinks the high value is due to the timing and what I’ve eaten in combination with the increased anxiety. OK, we’ll go with that. White counts are good, platelets a bit low. I can get all of my stealth bomber drug (thank goodness!) but a little less of the gem. Dr V answers a few other questions and off we go to the treatment room to get some timelines from Kim.
Due to the delays working out the lab stuff, drugs don’t start running until 2:30, stealth bomber at 3:00. In talking to Kim, she is concerned that we get a better handle on the nausea this week and recommends starting to use Zofran every 12 hours on a schedule instead of waiting for symptoms. This is the anti nausea drug I get IV before the stealth bomber/TH302 but I do not have a prescription for this. She calls Paula who talks with Dr. Vlahovic whose PA provides a prescription to Kim. Voila! Will get that filled at home on Wednesday and start taking it Wednesday evening.
Fortunately the drive home is much more comfortable than last week. Even stay awake until the last 45 minutes or so. Have a chance to get the hugs I need and visit with Jim this time before drugs and bed. Crashed before Brent gets back from work so I’ll get a few extra hugs from him tomorrow : )
Speaking of Tuesday…labs present a bit of a curve, my glucose is high. We meet Dr. Vlahovic who says, you feel fine, don’t you? This is NOT going to stop you from being treated, “Paula, call the drug company!” As you can imagine, Jenna and I immediately like this woman. This is quickly resolved and Dr. V thinks the high value is due to the timing and what I’ve eaten in combination with the increased anxiety. OK, we’ll go with that. White counts are good, platelets a bit low. I can get all of my stealth bomber drug (thank goodness!) but a little less of the gem. Dr V answers a few other questions and off we go to the treatment room to get some timelines from Kim.
Due to the delays working out the lab stuff, drugs don’t start running until 2:30, stealth bomber at 3:00. In talking to Kim, she is concerned that we get a better handle on the nausea this week and recommends starting to use Zofran every 12 hours on a schedule instead of waiting for symptoms. This is the anti nausea drug I get IV before the stealth bomber/TH302 but I do not have a prescription for this. She calls Paula who talks with Dr. Vlahovic whose PA provides a prescription to Kim. Voila! Will get that filled at home on Wednesday and start taking it Wednesday evening.
Fortunately the drive home is much more comfortable than last week. Even stay awake until the last 45 minutes or so. Have a chance to get the hugs I need and visit with Jim this time before drugs and bed. Crashed before Brent gets back from work so I’ll get a few extra hugs from him tomorrow : )
Thursday the 21st, Jim turns 60!
Good thing for great friends, food, and birthdays! The Free Clinic brought lunch and dessert for Jim and the office on Thursday. The Ballous provided Jim’s birthday dinner complete with decadent chocolate cake. Dinner was enough to feed a platoon so we also get frozen leftovers which Brent had no problem working through much of when we were gone for the third treatment. It was also supposed to be a bridge night but the freezing rain changed that plan. Brent had to work but Jim, Jenna, and I celebrated. Wow, 60!
Friday we realized that we had lasagna in the fridge that Betsy had brought on Wednesday. Might as well have the Carters over to eat the food they provided and have a shot at some of the bridge we missed the night before. Jim, Buddy, Brent and Jenna played away. I was having a mild gem flu/fatigue attack so Betsy and I sat and read and chatted. Must have been interesting for her to chat with someone who couldn’t keep her eyes open. Brain awake but couldn’t keep those lids up : ) Tylenol and dinner did wonders. By the time Brent had met his bridge quota and Betsy took over, I was up and alert and part of the conversation while catching up on the newspapers I’d missed the past few days.
Saturday Jim went and took a morning class on using his digital camera. It’s something he’d been interested in and the timing was perfect for a birthday gift. Spent Sunday evening with Jim and Shelly watching the Saints/Vikings game. It was nice to sit around on someone else’s couch, visit, and eat a yummy dinner. Also reminds me how nice it is to get out. Of course that’s easy when you have friends who are glad to have you on their couch with your pillow and blankie in tow just in case.
Friday we realized that we had lasagna in the fridge that Betsy had brought on Wednesday. Might as well have the Carters over to eat the food they provided and have a shot at some of the bridge we missed the night before. Jim, Buddy, Brent and Jenna played away. I was having a mild gem flu/fatigue attack so Betsy and I sat and read and chatted. Must have been interesting for her to chat with someone who couldn’t keep her eyes open. Brain awake but couldn’t keep those lids up : ) Tylenol and dinner did wonders. By the time Brent had met his bridge quota and Betsy took over, I was up and alert and part of the conversation while catching up on the newspapers I’d missed the past few days.
Saturday Jim went and took a morning class on using his digital camera. It’s something he’d been interested in and the timing was perfect for a birthday gift. Spent Sunday evening with Jim and Shelly watching the Saints/Vikings game. It was nice to sit around on someone else’s couch, visit, and eat a yummy dinner. Also reminds me how nice it is to get out. Of course that’s easy when you have friends who are glad to have you on their couch with your pillow and blankie in tow just in case.
Second Treatment
What a week. Jenna and I have another safe trip to Chapel Hill on Monday. This time my cousin Maura and her sweet dog Jett join us for dinner. We enjoy some great take out Thai food. It was more fun to eat together at Leila’s that sit in a restaurant. I love that Jenna is getting to know an aunt and cousin that she’s only really known through stories or pictures. More examples for her of the strong women in this family.
Tuesday is a crazy day in the clinic and the treatment room because the day before had been a holiday. Everything goes well, just a busier place than usual. We had known that Dr. Blobe would be out of town this and the following Tuesday and I would be meeting Dr. Vlahovic. She was double booked that day so although she signed off on my labs, we met with her PA instead. Got to the treatment room and had Kim (hooray!) again. Once the port is accessed and drugs start flowing, things go smoothly since the protocol has to run on a timeline.
I send out my stealth bomber texts to get those interested. Some are visualizing the TH302 doing it’s thing. I love all that thought and energy working for me! Others send calming thoughts and prayers to remind me that Jenna and I are not alone here and that Jim, the boys and my parents are not alone at this time.
We head home about 5:30 but unfortunately the nausea hits about 2 hours into the drive. Ice cream and anti nausea meds helped. Poor Jim and Brent. I hit the door in rough shape. Hug me, drug me, and put me to bed!
Fortunately hope springs eternal and Wednesday is another great day. As the week runs on the whole ooky tummy, mild gem flu and more frequent episodes of fatigue hit. Makes for more of a mental challenge as we come down off the initial high of finding the hope this protocol offers. Still, in the big scheme of side effects this ain’t so bad.
Tuesday is a crazy day in the clinic and the treatment room because the day before had been a holiday. Everything goes well, just a busier place than usual. We had known that Dr. Blobe would be out of town this and the following Tuesday and I would be meeting Dr. Vlahovic. She was double booked that day so although she signed off on my labs, we met with her PA instead. Got to the treatment room and had Kim (hooray!) again. Once the port is accessed and drugs start flowing, things go smoothly since the protocol has to run on a timeline.
I send out my stealth bomber texts to get those interested. Some are visualizing the TH302 doing it’s thing. I love all that thought and energy working for me! Others send calming thoughts and prayers to remind me that Jenna and I are not alone here and that Jim, the boys and my parents are not alone at this time.
We head home about 5:30 but unfortunately the nausea hits about 2 hours into the drive. Ice cream and anti nausea meds helped. Poor Jim and Brent. I hit the door in rough shape. Hug me, drug me, and put me to bed!
Fortunately hope springs eternal and Wednesday is another great day. As the week runs on the whole ooky tummy, mild gem flu and more frequent episodes of fatigue hit. Makes for more of a mental challenge as we come down off the initial high of finding the hope this protocol offers. Still, in the big scheme of side effects this ain’t so bad.
Side effects and such
Wednesday was a GREAT day. Have had other chemo folks tell me that the day after is often their best day. Sure was for me. Got a bunch done at home in the morning and stopped to say hi to my department on my way to the Y. Not my usual workout level but I was there and moving.
The next morning I was still on a roll so I stopped to see my buddies in case management. I needed to see my girls! It was a great visit. Good for my spirit. We developed the “acute care hug”. Stand a few feet apart , arms out and do the long distance hug thing. Figure if my immune system is being suppressed the last people I need to hug are those working in a hospital or a school.
Side effects are always a big question so of course we asked what to expect. Surprisingly, neither of these drugs tend to cause major hair loss so we’ll see about that.
Gemcitabine can within the first 5 days give you a bit of “gem flu”. Just like any old flu you can get joint aches, chills, the usual but a short course. Got mine Thursday afternoon, day 3. Rolled in at about 1:30 and lasted until about 9:00. All in all, not terrible. Thankfully did not feel like I’d been hit by a mack truck. More like the sedan/mini van variety. Hung out in the recliner, still able to eat a bit and stay hydrated. Snoozed, read. Betsy stopped by at the perfect time and chatted with me through my sleepiness.
Of course there is always the famous chemo nausea. Had some off and on for the rest of the week and an energy dip around 4:30 each day that didn’t even require a nap. Just had to sit and chill for a bit. Staying hydrated and eating smaller amounts more frequently helped work through the nausea since I knew I’d get fussed at on Tuesday if my weight dropped. I finally gave up trying to figure out the belly aches and just started referring to them as “ooky tummy” - a highly professional term : )
Felt much better by Sunday afternoon. Good thing because Monday we get back in the car.
The next morning I was still on a roll so I stopped to see my buddies in case management. I needed to see my girls! It was a great visit. Good for my spirit. We developed the “acute care hug”. Stand a few feet apart , arms out and do the long distance hug thing. Figure if my immune system is being suppressed the last people I need to hug are those working in a hospital or a school.
Side effects are always a big question so of course we asked what to expect. Surprisingly, neither of these drugs tend to cause major hair loss so we’ll see about that.
Gemcitabine can within the first 5 days give you a bit of “gem flu”. Just like any old flu you can get joint aches, chills, the usual but a short course. Got mine Thursday afternoon, day 3. Rolled in at about 1:30 and lasted until about 9:00. All in all, not terrible. Thankfully did not feel like I’d been hit by a mack truck. More like the sedan/mini van variety. Hung out in the recliner, still able to eat a bit and stay hydrated. Snoozed, read. Betsy stopped by at the perfect time and chatted with me through my sleepiness.
Of course there is always the famous chemo nausea. Had some off and on for the rest of the week and an energy dip around 4:30 each day that didn’t even require a nap. Just had to sit and chill for a bit. Staying hydrated and eating smaller amounts more frequently helped work through the nausea since I knew I’d get fussed at on Tuesday if my weight dropped. I finally gave up trying to figure out the belly aches and just started referring to them as “ooky tummy” - a highly professional term : )
Felt much better by Sunday afternoon. Good thing because Monday we get back in the car.
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