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 : )
Friday, January 29, 2010
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.
Monday, January 25, 2010
First Treatment. Chemo Virgin
Monday Jan 11 Jenna and I head south. Chris has asked to join us for the first session. She has certainly “been there, done that” and wants to be holding my hand when I walk into the treatment room for the first time. For those of you who don’t know Chris, she is my college roomie. Actually, we had met in high school and gone off to BU together. Many life adventures, much of which is not publishable although my children seem to think they will wheedle stuff out of her and Molly once they are out of college. I often remind Brent, Luke and Jenna that I have more money than they do plus dirt to dish in return : ) Chris spent 2009 battling bilateral breast cancer and has finished her chemo and radiation. Actually had some of her follow up/surveillance studies done this morning before driving to be with us.
Chris arrives in Chapel Hill at the same time Jenna and I do. Aunt Leila is wonderful and has assured us that chemo buddies are welcome too. Another yummy dinner, visit, movies and bed.
Tuesday morning comes with some expected anxiety. I am a bit antsy to get out the door and get this party started. We arrive and things go very smoothly. Chris finds out that we have time to grab some breakfast after my labs are drawn. I had not been able to eat much before we left. She gets to meet Paula and Dr. Blobe. It’s always good to have someone with you to help prompt questions and listen to what is being said. You think you’re getting it all but you’re not. They marvel at my “chemo naïve” lab values. I won’t be a chemo virgin for long. The call gets made, thaw the drug.
We sign in for my treatment room visit and get to meet my nurse Kim. She is wonderful, kind and efficient. She lets us know it will be a bit before the drug arrives from pharmacy and that we have time to pick up something to eat and drop off prescriptions. Off we go. Back with time to spare and food for lunch.
I have had questions about the treatment room set up. It is a large room with recliners and visitor chairs around the perimeter. It also has various internal sections with similar set up. There are also some rooms with beds that open into the center area. Kim has me settle into a bed and places the piece to access my port. Chris is holding on tight and actually accessing the port feels like not much more than a needle prick. My new routine begins. Port is flushed, zofran runs, TH302 runs, all total just about an hour and a half. While the TH302 is running, I visualize it going to the mets in my liver and to the main tumor in my pancreas and doing it’s stealth bomber thing. Get it there and blast that stuff out! I find out that quite a few folks are doing the same visualization. I love the thought of that!
Once the stealth bomber is done running, I get an hour and a half off. The connector piece stays in place and gets tucked in to my shirt. We decide to walk around while we can because we’re tired of sitting. We get back in time for the decadron followed by the gemcitabine. We have been assured by Paula, Dr. Blobe and Kim that it is safe for me to travel back to Virginia. “If you’re going to have a reaction, it will be while it’s running”. Besides, I want to get home before the side effects start.
My chauffer is wonderful. We head north and I am starving. A few food and bathroom stops along the way and home looks GREAT. Nothing like a big hug from Jim. About an hour after getting back the nausea starts creeping in plus I’m beat. Time for drugs, bed and a good night’s sleep.
Chris arrives in Chapel Hill at the same time Jenna and I do. Aunt Leila is wonderful and has assured us that chemo buddies are welcome too. Another yummy dinner, visit, movies and bed.
Tuesday morning comes with some expected anxiety. I am a bit antsy to get out the door and get this party started. We arrive and things go very smoothly. Chris finds out that we have time to grab some breakfast after my labs are drawn. I had not been able to eat much before we left. She gets to meet Paula and Dr. Blobe. It’s always good to have someone with you to help prompt questions and listen to what is being said. You think you’re getting it all but you’re not. They marvel at my “chemo naïve” lab values. I won’t be a chemo virgin for long. The call gets made, thaw the drug.
We sign in for my treatment room visit and get to meet my nurse Kim. She is wonderful, kind and efficient. She lets us know it will be a bit before the drug arrives from pharmacy and that we have time to pick up something to eat and drop off prescriptions. Off we go. Back with time to spare and food for lunch.
I have had questions about the treatment room set up. It is a large room with recliners and visitor chairs around the perimeter. It also has various internal sections with similar set up. There are also some rooms with beds that open into the center area. Kim has me settle into a bed and places the piece to access my port. Chris is holding on tight and actually accessing the port feels like not much more than a needle prick. My new routine begins. Port is flushed, zofran runs, TH302 runs, all total just about an hour and a half. While the TH302 is running, I visualize it going to the mets in my liver and to the main tumor in my pancreas and doing it’s stealth bomber thing. Get it there and blast that stuff out! I find out that quite a few folks are doing the same visualization. I love the thought of that!
Once the stealth bomber is done running, I get an hour and a half off. The connector piece stays in place and gets tucked in to my shirt. We decide to walk around while we can because we’re tired of sitting. We get back in time for the decadron followed by the gemcitabine. We have been assured by Paula, Dr. Blobe and Kim that it is safe for me to travel back to Virginia. “If you’re going to have a reaction, it will be while it’s running”. Besides, I want to get home before the side effects start.
My chauffer is wonderful. We head north and I am starving. A few food and bathroom stops along the way and home looks GREAT. Nothing like a big hug from Jim. About an hour after getting back the nausea starts creeping in plus I’m beat. Time for drugs, bed and a good night’s sleep.
Pre Cruise weekend
OK, it’s time to relax, visit, chill out. What better way to do that than have a girlfriend arrive to help rearrange your house and maybe even paint? Here comes Molly, bearing gifts, friendship and love. We cook, eat, laugh. Don and Molly have sent an Ipod nano as an early 50th birthday present to help during travel and chemo. Michele and the office staff have already delivered a Kindle for travel and chemo distraction. I’m having to really step up my techno skills : )
I had decided that the guest room needed to be rearranged and a new paint color chosen and Molly is the perfect girl for the job. She is really ready to go and has even brought paint clothes. While out buying paint on Saturday, we decide that I need some clothes for my cruise. Need something comfy for the car rides and treatment day. No problem. All shopping missions accomplished.
We get home, have Jim move frames around for us, rearrange the guest room and make dinner. Sunday morning I head to church and Molly starts painting. Wow! Before she leaves the room is done except for a few touch ups Jenna and I provide as the room dries.
Jenna and I spend Sunday afternoon getting ready for our drive on Monday. We have decided that we’ll drive to Chapel Hill (about 4 hours) on Mondays and return as soon as treatment is completed on Tuesdays. We all agree that we are as prepared as we can be, time to jump in and see how it goes.
I had decided that the guest room needed to be rearranged and a new paint color chosen and Molly is the perfect girl for the job. She is really ready to go and has even brought paint clothes. While out buying paint on Saturday, we decide that I need some clothes for my cruise. Need something comfy for the car rides and treatment day. No problem. All shopping missions accomplished.
We get home, have Jim move frames around for us, rearrange the guest room and make dinner. Sunday morning I head to church and Molly starts painting. Wow! Before she leaves the room is done except for a few touch ups Jenna and I provide as the room dries.
Jenna and I spend Sunday afternoon getting ready for our drive on Monday. We have decided that we’ll drive to Chapel Hill (about 4 hours) on Mondays and return as soon as treatment is completed on Tuesdays. We all agree that we are as prepared as we can be, time to jump in and see how it goes.
Support, love, prayers and timing
After getting all of the details and information about the horrible days following Dec 22nd in place, it is time to talk about the important stuff - the overwhelming and humbling support, love and prayers being shown to and for me and my family. Our friends, family and community have stepped in with strong arms, strong hugs, strong faith and some pretty darn good food. Cards, calls, flowers, gifts, emails, greetings in town. Endless offers of “let me know if there is ANYTHING I can do”. People asking Jim, “Isn’t Lisa at Duke today? How is it going?” And, by the way, “How are you doing, doc?” Keeping Jim and the kids and my parents in your hearts brings me great comfort.
Let’s talk about timing. Two weeks after that ultrasound we’re consulting at Duke and one week later I’ve started treatment that includes a new experimental drug. It all happened so quickly that at first we questioned if we were jumping in to soon. Paula says my timing has been amazing. Thanks but it’s certainly not all due to me. Granted we pushed a bit. I know, you’re shocked to think I could be pushy : ) however my wise husband said it well. You know all those prayers and medical folks working on our behalf? Well, that's what got us here.
I do not have the words to adequately express my awe and appreciation. I keep giving people a rather corny example of my perception of this. You know the Verizon commercials with all the people standing behind the Verizon guy? Well that’s what it feels like to me. Many, many people standing behind us with words of hope and encouragement and prayer. It is truly palpable to me. I see it, feel it, sense it. It sustains me.
We all know there are downsides to small town living but let me tell you, the upsides are amazing. To see cards in my mailbox from friends, acquaintances, churches, bible school classes and to hear that I am on yet another prayer list is uplifting in ways I could not have know before this.
Let’s talk about timing. Two weeks after that ultrasound we’re consulting at Duke and one week later I’ve started treatment that includes a new experimental drug. It all happened so quickly that at first we questioned if we were jumping in to soon. Paula says my timing has been amazing. Thanks but it’s certainly not all due to me. Granted we pushed a bit. I know, you’re shocked to think I could be pushy : ) however my wise husband said it well. You know all those prayers and medical folks working on our behalf? Well, that's what got us here.
I do not have the words to adequately express my awe and appreciation. I keep giving people a rather corny example of my perception of this. You know the Verizon commercials with all the people standing behind the Verizon guy? Well that’s what it feels like to me. Many, many people standing behind us with words of hope and encouragement and prayer. It is truly palpable to me. I see it, feel it, sense it. It sustains me.
We all know there are downsides to small town living but let me tell you, the upsides are amazing. To see cards in my mailbox from friends, acquaintances, churches, bible school classes and to hear that I am on yet another prayer list is uplifting in ways I could not have know before this.
It's official. I've been accepted to Duke Cruise Lines
After arriving back home it was time to wait. Paula began setting up appointments for me because she was confident that the approval from the drug company was just a matter of shuffling papers. She and Dr. Blobe had already signed off on their approval. She calls on Thursday with a verbal OK from the drug company and then on Friday with the “official” word. We are excited to have this opportunity but this is crazy. Certainly not a vetting process I was ever looking to be a part of. So, how does this all work?
It’s planned for 6 cycles of 4 weeks that include 3 weeks in a row of treatment and 1week off. I will be treated on Tuesdays because that is the morning Dr. Blobe is in the clinic. Tuesdays will be long days. Start with a blood draw followed by about an hour for results to process. Doc and nurses check lab results and examine me to be sure that I am well enough for treatment. Once they see that I’ve met those parameters, a call is made to the pharmacy and treatment room to thaw the TH302. Thawing takes an hour. After thawing, the drug stays in the pharmacy for another 45 minutes to be mixed into solution. I will receive Zofran-an anti nausea drug followed by TH302-experimental drug. Then and hour and a half break until getting Decadron-steroid-helps with nausea followed by Gemcitabine-standard pancreatic CA drug. The Gem has to start two hours after the TH302 ends.
That’s what we know at this point. Molly is on her way for a weekend “pre cruise” visit. We have decided that this Duke experience will be my Duke Cruise. At one point Dr. Blobe was explaining Paula’s role as the protocol nurse. She’ll take care of all the logistics, communication, setting up appointments….oh, you know what “she’s the cruise director”. Oh boy, Duke Cruise Lines here I come.
It’s planned for 6 cycles of 4 weeks that include 3 weeks in a row of treatment and 1week off. I will be treated on Tuesdays because that is the morning Dr. Blobe is in the clinic. Tuesdays will be long days. Start with a blood draw followed by about an hour for results to process. Doc and nurses check lab results and examine me to be sure that I am well enough for treatment. Once they see that I’ve met those parameters, a call is made to the pharmacy and treatment room to thaw the TH302. Thawing takes an hour. After thawing, the drug stays in the pharmacy for another 45 minutes to be mixed into solution. I will receive Zofran-an anti nausea drug followed by TH302-experimental drug. Then and hour and a half break until getting Decadron-steroid-helps with nausea followed by Gemcitabine-standard pancreatic CA drug. The Gem has to start two hours after the TH302 ends.
That’s what we know at this point. Molly is on her way for a weekend “pre cruise” visit. We have decided that this Duke experience will be my Duke Cruise. At one point Dr. Blobe was explaining Paula’s role as the protocol nurse. She’ll take care of all the logistics, communication, setting up appointments….oh, you know what “she’s the cruise director”. Oh boy, Duke Cruise Lines here I come.
Sunday, January 24, 2010
Duke consultation, part 2
Ok, we are still in the office. We are discussing things with Paula. We explain that this is all pretty new to us and that 2 weeks to the day before this appointment was when I had gone in to work for my ultrasound thinking something was wrong with my gallbladder. Wait a minute, she says. You’ve had an ultrasound, CT, biopsy, pathology results, an oncology consult, your port placed and are here seeing us within 2 weeks? Yes ma’am. And, since we’re here, if you have time to see us tomorrow we can spend another night with my Aunt and come back for paperwork and labs tomorrow. She will check her schedule and call me later. I think I like this chick. I get the impression she can make things happen.
Back to Leila’s to wait on word from Paula. We leave Jim to chill out a bit and Jenna, Leila and I head to Trader Joe’s and Whole Foods. Remember where we live… this is a big deal for Jenna and I : )
Paula calls back and can see us at noon tomorrow. We are 99.9% certain of this choice. I place a call to Dr. K, my oncologist in Virginia because now he has had another day and a half to hear back from the contacts he had made on my behalf. Give him the brief update and that we are 99.9% ready to do this but what else has he heard? He tells me that he has heard back from most of his East coast contacts, some of whom referred him to this exact study. “Lisa, this is where you belong”. Ok, now maybe we can let ourselves go from cautiously optimistic to excited. It is certainly the first time we’ve felt genuine hope in two weeks!
Wednesday we return and do the paperwork with Paula. Jim asks if I’m the only woman in the pancreatic arm of this study. Actually, I am only the third person in Phase 2 of the pancreatic arm at Duke and we are all women. I’m the youngest with the others being early 60’s and early 70’s. Paula leaves to take a call and we wonder if the tumor reduction numbers Dr. Blobe told us about were 2 results out of 2??
Papers are signed, now off for blood work. We are waiting for another call from Paula because I also need a baseline chest/abdomen/pelvis CT and my diagnostic study from home did not include the chest. If she can arrange a radiology appointment this afternoon, she can upload the data, have it to the drug company tomorrow with approval Friday and treatment could start on Tuesday!! She calls as we sit down to eat, they can see me at 4:00. We walk around, find comfy chairs to crash in and wait for 4:00. CT goes well but by the time it’s over I am DUN. Shot, spent, exhausted, have had it. We call my folks, call Leila to let her know that she has signed up for more than she may have bargained for because we may be back on Monday to start treatment Tuesday. “I’m in!” she says.
We head back to Virginia. I am to eat, drink, take care of myself and am specifically NOT to lose weight. Now we wait to hear back on the formal approval and schedule. Wow, it’s gonna be a long road ahead and it looks like we’ll be traveling with a stealth bomber. TH302. Or as Jim decides to call it, total hope 302.
Back to Leila’s to wait on word from Paula. We leave Jim to chill out a bit and Jenna, Leila and I head to Trader Joe’s and Whole Foods. Remember where we live… this is a big deal for Jenna and I : )
Paula calls back and can see us at noon tomorrow. We are 99.9% certain of this choice. I place a call to Dr. K, my oncologist in Virginia because now he has had another day and a half to hear back from the contacts he had made on my behalf. Give him the brief update and that we are 99.9% ready to do this but what else has he heard? He tells me that he has heard back from most of his East coast contacts, some of whom referred him to this exact study. “Lisa, this is where you belong”. Ok, now maybe we can let ourselves go from cautiously optimistic to excited. It is certainly the first time we’ve felt genuine hope in two weeks!
Wednesday we return and do the paperwork with Paula. Jim asks if I’m the only woman in the pancreatic arm of this study. Actually, I am only the third person in Phase 2 of the pancreatic arm at Duke and we are all women. I’m the youngest with the others being early 60’s and early 70’s. Paula leaves to take a call and we wonder if the tumor reduction numbers Dr. Blobe told us about were 2 results out of 2??
Papers are signed, now off for blood work. We are waiting for another call from Paula because I also need a baseline chest/abdomen/pelvis CT and my diagnostic study from home did not include the chest. If she can arrange a radiology appointment this afternoon, she can upload the data, have it to the drug company tomorrow with approval Friday and treatment could start on Tuesday!! She calls as we sit down to eat, they can see me at 4:00. We walk around, find comfy chairs to crash in and wait for 4:00. CT goes well but by the time it’s over I am DUN. Shot, spent, exhausted, have had it. We call my folks, call Leila to let her know that she has signed up for more than she may have bargained for because we may be back on Monday to start treatment Tuesday. “I’m in!” she says.
We head back to Virginia. I am to eat, drink, take care of myself and am specifically NOT to lose weight. Now we wait to hear back on the formal approval and schedule. Wow, it’s gonna be a long road ahead and it looks like we’ll be traveling with a stealth bomber. TH302. Or as Jim decides to call it, total hope 302.
Duke consultation
We have a 10:00 appointment to see Dr. Blobe. Oncology has forwarded all of my records and we have brought a disk of my ultrasound and CT studies from home. The emotional roller coaster is almost indescribable. Dr. Blobe is very kind and friendly. He reviews all of my medical and personal information. I smile as I inform him that we just celebrated our 25th and had plans for many more. Yes I have three children ages 19, 21 and 23 whose graduations, wedding and children, by the way, have not arrived yet. He mentions that there are a few protocols in place at the moment and he has asked nurses from two of them to meet with us. We learn that the protocols are in Phase 2 and that Phase 1 protocols are done to establish dose tolerances. So, in both cases the dosing has been determined. Both protocols use Gemcitabine (the traditional chemo for pancreatic cancer) plus another drug.
He goes to review the CT disk and we meet the first nurse. She describes her protocol and is not able to give us an answer when we ask about the results they’ve seen in Phase 1. Jim, Jenna and I don’t talk about it but we each wonder if this is the reason we came down here because it doesn’t sound “exciting” as we’d been told previously.
Dr. Blobe returns and says, “First, I have to tell you what you have going for you”. Gotta love this guy. The fact that his internship and residency were in Boston sort of bias him for Jenna and me anyway. He proceeds to tell me that I am young and healthy. Literally, there is nothing else wrong with me (pesky Stage 4 pancreatic cancer aside). Yes I have some lesions in my liver but not a great deal and that folks who get in trouble early with pancreatic cancer are the ones losing weight by the time they present. I laugh out load. Lose weight? Not only have I not lost weight but believe I have gained a few pounds since Jim and I returned from our fabulous Caribbean vacation in November. Dr. Blobe is thrilled.
Now he starts telling us about the “exciting” study that is going on. We need a better drug than Gemcitabine for pancreatic cancer but we don’t have one. He’s been hopeful before about things that did not pan out but never excited as he is now about this experimental drug. The three of us look a bit confused. He looks down in my hand and sees the study we discussed with the first nurse. “Oh, not that one. Let me get the one that I’m talking about”. He comes back with a big smile on his face and proceeds to tell us about TH302. Doesn’t have a name yet but they call it Threshold since that is the name of the drug company producing it. This drug targets low oxygen environments and I learn that tumors tend to be low oxygen environments. It makes its way there and releases itself. Sound kind of stealth bomberish to me.
Results in Phase 1, we ask. Well, we never heard this from him but he has a patient with at 70% reduction in tumors and one with a 90% reduction. We almost fall off of our chairs. I believe that Jim’s face and body have actually relaxed a little. Dr. Blobe introduces us to Paula who is the nurse for this protocol. She runs through all of the logistics and answers our questions. More questions for Dr. Blobe and we are about ready to sign off on it. Oh, nope, can’t let you do that. We have to prove that you’ve had time to think about it so you’ll need to come back if you are interested.
He goes to review the CT disk and we meet the first nurse. She describes her protocol and is not able to give us an answer when we ask about the results they’ve seen in Phase 1. Jim, Jenna and I don’t talk about it but we each wonder if this is the reason we came down here because it doesn’t sound “exciting” as we’d been told previously.
Dr. Blobe returns and says, “First, I have to tell you what you have going for you”. Gotta love this guy. The fact that his internship and residency were in Boston sort of bias him for Jenna and me anyway. He proceeds to tell me that I am young and healthy. Literally, there is nothing else wrong with me (pesky Stage 4 pancreatic cancer aside). Yes I have some lesions in my liver but not a great deal and that folks who get in trouble early with pancreatic cancer are the ones losing weight by the time they present. I laugh out load. Lose weight? Not only have I not lost weight but believe I have gained a few pounds since Jim and I returned from our fabulous Caribbean vacation in November. Dr. Blobe is thrilled.
Now he starts telling us about the “exciting” study that is going on. We need a better drug than Gemcitabine for pancreatic cancer but we don’t have one. He’s been hopeful before about things that did not pan out but never excited as he is now about this experimental drug. The three of us look a bit confused. He looks down in my hand and sees the study we discussed with the first nurse. “Oh, not that one. Let me get the one that I’m talking about”. He comes back with a big smile on his face and proceeds to tell us about TH302. Doesn’t have a name yet but they call it Threshold since that is the name of the drug company producing it. This drug targets low oxygen environments and I learn that tumors tend to be low oxygen environments. It makes its way there and releases itself. Sound kind of stealth bomberish to me.
Results in Phase 1, we ask. Well, we never heard this from him but he has a patient with at 70% reduction in tumors and one with a 90% reduction. We almost fall off of our chairs. I believe that Jim’s face and body have actually relaxed a little. Dr. Blobe introduces us to Paula who is the nurse for this protocol. She runs through all of the logistics and answers our questions. More questions for Dr. Blobe and we are about ready to sign off on it. Oh, nope, can’t let you do that. We have to prove that you’ve had time to think about it so you’ll need to come back if you are interested.
Surgery and hopeful news
Monday Jan 4 Jim and I are at Alleghany waiting to be called back soon to have my medication port placed. It will be under the skin on my left chest, about the size of a walnut and will be how my chemo is delivered once a regimen is chosen. Jim’s phone rings at about 9:30. It’s Dr. K. He heard from Duke this morning and they want to meet with me. He says there is “exciting” news there, can we go? We get called back, changed and ready for surgery when another call comes in. I have an appointment at Duke at 10:00 a.m. the next day. We call the house and speak with my parents and Jenna. They are packed to return to Buffalo and Jenna is going to take them to the airport. My mom calls Leila in Chapel Hill and the plans start rolling. We come home, eat lunch and pack while Jenna and my folks leave for the Roanoke airport. We’ll leave one car there and Jim and I will pick Jenna up on our way south. We don’t have much details or definition of “exciting” at this point but we’re ready to take a shot at it. Meanwhile Chris is hot on the research trail. Before I leave I have printed off some of the Duke protocol studies, the bio on the doc I’m going to see and tons of information including national treatment protocol search engines. Makes for some light reading before the morning appointment : )
We arrive at Aunt Leila’s and she assures us she is ready for this challenge. Dinner is delicious and we update her on the little we know so far. We visit, watch a movie and plan for Tuesday.
We arrive at Aunt Leila’s and she assures us she is ready for this challenge. Dinner is delicious and we update her on the little we know so far. We visit, watch a movie and plan for Tuesday.
New Year's Eve
Dr K does call as promised however, as expected, he has not heard back from anyone yet. Friends stop in to visit. Shelly encourages us to join them for New Year’s Eve. I cannot imagine bringing our giant wet blanket selves to a party. On their way up to Snowshoe, Maeve and Ian drive in for the get together at the Ballous. They stop by bearing gifts. A green and purple bag for me to use as my chemo bag filled with a tiara, body butter, sangria flavored lip gloss, and an eye mask. Looks like I’m ready to kick some butt.
As the day goes on we realize it would be nice to get out. It is wonderful to see folks who love us and give us many hugs and much encouragement. We are emotionally exhausted but glad to be out and as my folks and our children insisted, we stay until midnight. What does 2010 have in store for us? Before all this we had hoped to enjoy a decade birthday year. Jim’s 60th, my 50th and Jenna’s 20th. Perhaps watching Luke perform at George Mason and celebrating Brent’s acceptance back to college. Our 26th anniversary, vacation, just every day life.
Valium is my new night time best friend.
As the day goes on we realize it would be nice to get out. It is wonderful to see folks who love us and give us many hugs and much encouragement. We are emotionally exhausted but glad to be out and as my folks and our children insisted, we stay until midnight. What does 2010 have in store for us? Before all this we had hoped to enjoy a decade birthday year. Jim’s 60th, my 50th and Jenna’s 20th. Perhaps watching Luke perform at George Mason and celebrating Brent’s acceptance back to college. Our 26th anniversary, vacation, just every day life.
Valium is my new night time best friend.
Blood tests, tumor markers, biopsy report, oncology visit
Christmas was on a Friday. By the weekend we knew the additional blood tests showing the tumor markers should be available. Jim and I agree that we will go to the office, pull anything with my name off of the fax and go upstairs to review it. There it is, kicking us in the gut. The CA 19-9 tumor marker for pancreatic cancer is over 2700, should be zero. Not much more room for denial or hope of an alternate diagnosis. We’ll need to wait for the biopsy report for more definitive information. Michele calls pathology at Lewis Gale on Monday and has a verbal report by Tuesday. Pathology has also called and spoke to the Oncologist I am scheduled to see on Wednesday. We hear that it is moderately differentiated pancreatic cancer. All the horrible statistics related to this cancer pound away at us. We explain it again to my parents and to the kids. Seems like each time we update them, the news gets worse. We decide to wait to tell others until Wed the 30th when we see the Oncologist and have all of the information put together for us.
Dr. K is very kind but the news is unbearable. “You have Stage 4 pancreatic cancer with mets to your liver” We ask many questions and discuss treatment options. “Average life expectancy with no treatment is 6 months”, 6 months?? June?? “ I do have a patient who is here 6 years later” I do not have the words to describe how devastated we are. Then the conversation turns to other options. “You’re young and healthy. Your lab work – there is nothing else wrong with you. You are who the experimental studies are looking for”. OK so time to go looking for a fight. He is going to work on his contacts and essentially “shop me out” to his colleagues and asks to give him a few days.
We go to the surgery office to schedule my port. As we walk around the hospital, some folks know and many are finding out from us as we get to the various departments needed to schedule the surgery. It is heart wrenching. So much support, prayer and comfort is offered to us.
We go home, give everyone the horrible update and the phone calls begin. I had decided that I wanted to make the calls myself. I certainly did not want my parents to do this when they return to Buffalo. Hearing the pain and questions over the phone seemed endless but I am grateful to hear the voices of friends and family. I try to remember to say, “my doctor is looking into treatment options” and “don’t look this stuff up, the statistics are horrific”
Dr. K is very kind but the news is unbearable. “You have Stage 4 pancreatic cancer with mets to your liver” We ask many questions and discuss treatment options. “Average life expectancy with no treatment is 6 months”, 6 months?? June?? “ I do have a patient who is here 6 years later” I do not have the words to describe how devastated we are. Then the conversation turns to other options. “You’re young and healthy. Your lab work – there is nothing else wrong with you. You are who the experimental studies are looking for”. OK so time to go looking for a fight. He is going to work on his contacts and essentially “shop me out” to his colleagues and asks to give him a few days.
We go to the surgery office to schedule my port. As we walk around the hospital, some folks know and many are finding out from us as we get to the various departments needed to schedule the surgery. It is heart wrenching. So much support, prayer and comfort is offered to us.
We go home, give everyone the horrible update and the phone calls begin. I had decided that I wanted to make the calls myself. I certainly did not want my parents to do this when they return to Buffalo. Hearing the pain and questions over the phone seemed endless but I am grateful to hear the voices of friends and family. I try to remember to say, “my doctor is looking into treatment options” and “don’t look this stuff up, the statistics are horrific”
Christmas Eve and Christmas Day
By the time Chirstmas Eve arrives we have all spent way too much time crying and looking at each other. Jim and I find a Lessons and Carols service and decide we need to get out of the house. We agree that if at any point we need to leave, we will quietly walk out. Turns out the music and service are wonderful and exactly what our souls needed. We drive around and look at lights afterward before heading home. Jenna and my folks attend midnight mass. Brent had worked and Luke headed back to Fairfax to celebrate with Diana’s family. Luke and Diana drive in on Christmas day so we can spend it together before Brent has to leave for work. It was wonderful to be together. The kids have gotten us a Wii to expand our horizons for our empty nestness. Wow, I hope we’ll be using it for a long time.
Thoughtful presents are exchanged and we enjoy being together. Of course everyone is hoping the biopsy will show this to be not as it appears but Jim and I know this is not likely. Will we sleep tonight?
Thoughtful presents are exchanged and we enjoy being together. Of course everyone is hoping the biopsy will show this to be not as it appears but Jim and I know this is not likely. Will we sleep tonight?
Biopsy
December 23rd we wake up early and drive to Lewis Gale. I call Chris and Molly to let them know what is happening. How can this be? It was just last year we were finding out about Chris’s breast cancer. More tears, prayers, devastation. The staff at the hospital is wonderful however it is a real challenge to listen to Christmas carols from the overhead music.
Turns out they cannot do the biopsy via ultrasound because it is too difficult to see the liver mets under the ribs. “They are only in the right lobe so we can’t see them well.” Only, she said only…is that good somehow? Fortunately the CT and radiologist for that are available and we are shortly meeting them and entering the CT room. After the procedure I have to stay on bedrest for four hours. I have the benefit of the drugs I was given for the CT. Not uncomfortable but more importantly, my mind is resting. A break from the dark, haunting thoughts is a welcome relief. Unfortunately, Jim does not have that luxury.
The time passes and we get to go home. I hang out on the couch. Watch everyone play cards, chat, we eat. Taking a stab at a “normal” evening. Wondering if normal will ever return to any of our vocabularies. Our minds are our worst enemies. None of us can shut off the thoughts of despair, trouble, death. Sleeping and eating become real challenges.
Turns out they cannot do the biopsy via ultrasound because it is too difficult to see the liver mets under the ribs. “They are only in the right lobe so we can’t see them well.” Only, she said only…is that good somehow? Fortunately the CT and radiologist for that are available and we are shortly meeting them and entering the CT room. After the procedure I have to stay on bedrest for four hours. I have the benefit of the drugs I was given for the CT. Not uncomfortable but more importantly, my mind is resting. A break from the dark, haunting thoughts is a welcome relief. Unfortunately, Jim does not have that luxury.
The time passes and we get to go home. I hang out on the couch. Watch everyone play cards, chat, we eat. Taking a stab at a “normal” evening. Wondering if normal will ever return to any of our vocabularies. Our minds are our worst enemies. None of us can shut off the thoughts of despair, trouble, death. Sleeping and eating become real challenges.
Saturday, January 23, 2010
Merry Christmas?
Not exactly. Had an abdominal ultrasound scheduled on my way into work on Dec 22nd thinking that my gallbladder was acting up. Hear that I will likely be having a follow up CT because there is “something” in my liver. Not worried at this point because it could be a variety of benign things. Michele, my doc and Jim’s partner, knows bad things are brewing because she had gotten a preliminary call after the ultrasound. Back to radiology I go to drink the contrast. They let me take it back to my department so I can get my work day ready while enjoying the lovely concoction. I call Jim to let him know about the CT and he says, “I’m on my way over”. What? This is no big deal, just a follow up study. “I’m on my way over”. Now, I panic. Jim arrives and looks terrible. Not saying too much. We hold hands, pace, wait for the CT. It is clear that he is in bad shape. CT gets taken and once the results are up we walk in to the poor radiologist’s reading room for his findings. Remember, these folks read films, dictate reports, call docs. They do not meet directly with patients. This is way outside the norm for him. “Those spots in your liver are solid, metastatic. If I were seeing your pancreas alone I would think pancreatitis but in view of that liver………” The air has gone out of the room. We are stunned, devastated, crushed. I look long and hard at the images and feel so angry. I want to know what we’re up against but it CANNOT be real. We ask-what do we do next? He recommends that we go to interventional radiology at Lewis Gale in Roanoke for an ultrasound guided biopsy of one of the liver mets. Back to my department to pass off the days work. We are rattled, crying as we leave to go the Jim’s office to schedule the biopsy. The staff is on it. The docs at Lewis Gale will see me at 8 in the morning. Oncology has been consulted regarding additional lab work. Back to the hospital to have the labs drawn that are needed for the morning. They will also run tumor markers and we know those results will take a few days.
Thank goodness my parents have already arrived. Luke is almost home and Jenna is flying in this evening. This news cannot get out until they are here with us. We arrive home and have to tell my parents and the boys. The pain, darkness and devastation are horrendous. My wonderful husband is devastated, distraught. Please, put the tree up so it is in the house before Jenna arrives. He manages to do that for us. My beautiful daughter arrives home from her amazing adventure at sea and this is her welcome. I cannot bear what has happened to my family.
Thank goodness my parents have already arrived. Luke is almost home and Jenna is flying in this evening. This news cannot get out until they are here with us. We arrive home and have to tell my parents and the boys. The pain, darkness and devastation are horrendous. My wonderful husband is devastated, distraught. Please, put the tree up so it is in the house before Jenna arrives. He manages to do that for us. My beautiful daughter arrives home from her amazing adventure at sea and this is her welcome. I cannot bear what has happened to my family.
Subscribe to:
Posts (Atom)
