We are so sad to say that Poppa passed away very suddenly and unexpectedly last Sunday, 9/9/12. He fought hard and he fought strong and in the end, his body just couldn't take anymore. He was always stubborn, always tough and he fought the good fight to the very end, just like the proud Marine that he is.
He died at home, very quickly and with my mom. They are guessing it was a heart attack or a blood clot. He was in no pain. That is what he would have wanted and we have the comfort of knowing that he never was in hospice care, never in the hospital, never kept alive on a respirator. He was independent for the entire journey. He did it on his terms. We just weren't ready, and we never would have been.
He was an inspiration to so many people, not just through this fight, but for his entire life. He was an amazing person, the best kind, and he knew how to make people feel loved and special. We will never be the same without his big spirit, his humor, his hugs and his constant watching out for all of us. We are trying very hard to get through each day, but he was the hero and the mascot of our family, and there is just a big hole without him.
We will be holding services to remember him this Saturday at:
England Family Mortuary
27135 Madison Ave
Temecula, Ca 92590
951-695-8555
Everyone is welcome to join us. We will also be having a lunch at my parent's house, immediately after the service.
We are very grateful that through this journey, we have always felt so loved, so supported, so cared about. Thank you to everyone who has stood by us, and who continue to now.
Team Poppa will be forever. He will always be our champion.
....Team Poppa
Thursday, September 13, 2012
Tuesday, September 4, 2012
fist pump!
The thing about cancer is that you never know what's happening on the inside. Dad is checking all the boxes, doing all the work of going forward with all the treatments and meds and we are hoping and praying that it's doing the job we want it to.
But, the truth is we don't know. We just have to keep walking forward, taking the next step in faith.
That is what we are doing. Every day, we just keep taking steps.
Dad is 2 weeks down and 3 to go with the radiation. There are no "progress reports" - we can't peek and find out whether it's working. So, once the 5th week is finished, there will be another scan and that will be the big reveal. But, we gotta get through the next three weeks first.
The first round of chemo is 25 days in and will complete on 9/9. Ideally, round 2 of chemo will start on 9/10. But, that is dependent on Dad's strength level. We have no control over that either, so we just control what we can {nutrition, hydration, pain management and nausea} and hope that his body responds. We are holding out hope and moving forward in faith, that all things will work together and get Dad the best possible outcome.
Today Dad had his weekly appointment with his Radiologist, Dr. Volpp. It went really great. It seems like every week, we hold our breath until after we see the doctor. Dad gained another 8 pounds over last week {YAY!!!} and was just generally in better spirits.
As we near the end of the chemo round, it is typical, we are told, that the patient will start feeling better and then just when that strength is starting to peak, the next round of chemo hits like a bad dream and it's back to square one.
When Dr.Volpp told Dad how happy he was to see him doing so much better than last week, Dad gave a fist pump! A fist pump!! It's hard to put it into words, but this disease wears down more than the body. It also attempts to break your spirit. Dad is a strong and powerful man. He has a giant heart. His presence fills up the room. But...that guy has been hidden from view a little lately, under the giant avalanche that is cancer. So, today, to see that, to see his fist pump, it was just a great moment.
Traveling this journey teaches you to appreciate each small victory, each meaningful moment. Tomorrow we will deal with tomorrow, and whatever that may bring, but today is pretty good. Today is a fist pump day!!
....Team Poppa
But, the truth is we don't know. We just have to keep walking forward, taking the next step in faith.
That is what we are doing. Every day, we just keep taking steps.
Dad is 2 weeks down and 3 to go with the radiation. There are no "progress reports" - we can't peek and find out whether it's working. So, once the 5th week is finished, there will be another scan and that will be the big reveal. But, we gotta get through the next three weeks first.
The first round of chemo is 25 days in and will complete on 9/9. Ideally, round 2 of chemo will start on 9/10. But, that is dependent on Dad's strength level. We have no control over that either, so we just control what we can {nutrition, hydration, pain management and nausea} and hope that his body responds. We are holding out hope and moving forward in faith, that all things will work together and get Dad the best possible outcome.
Today Dad had his weekly appointment with his Radiologist, Dr. Volpp. It went really great. It seems like every week, we hold our breath until after we see the doctor. Dad gained another 8 pounds over last week {YAY!!!} and was just generally in better spirits.
As we near the end of the chemo round, it is typical, we are told, that the patient will start feeling better and then just when that strength is starting to peak, the next round of chemo hits like a bad dream and it's back to square one.
When Dr.Volpp told Dad how happy he was to see him doing so much better than last week, Dad gave a fist pump! A fist pump!! It's hard to put it into words, but this disease wears down more than the body. It also attempts to break your spirit. Dad is a strong and powerful man. He has a giant heart. His presence fills up the room. But...that guy has been hidden from view a little lately, under the giant avalanche that is cancer. So, today, to see that, to see his fist pump, it was just a great moment.
Traveling this journey teaches you to appreciate each small victory, each meaningful moment. Tomorrow we will deal with tomorrow, and whatever that may bring, but today is pretty good. Today is a fist pump day!!
....Team Poppa
Wednesday, August 29, 2012
some positive news!
Sorry it's been a bit since I've posted....I wanted to wait until yesterday's appointment, because we weren't sure what that would hold. There was strong suspicion that Dad would need a blood transfusion this week, but NOPE! His blood counts are holding steady, which is great. Next week could be a totally different story, but this week we are in the clear. No transfusion needed. Cue the falling balloons.
And...he gained 8 pounds this week! That is HUGE. The nurse said the number and I cheered out loud {and then I asked her to repeat it twice}. Haha. Last week he had lost 8 pounds from the week before, so now he is back to where he was 2 weeks ago. We would have been happy with him just not losing anymore and holding steady, but for him to actually gain weight is great. He is still, of course, about 30 pounds light from where we were in May, but still - we are taking the victories that come our way. This is a victory.
The nurse is continuing to come to the house each day to administer fluid via IV, and he is taking the nutrition well also - we are able to get to the nutrition "quota" almost every day.
Both the pain and nausea seem to be well controlled now and seem to also be abating on their own. We have been able to scale both the pain and the nausea meds way back, so he is a little bit more clear and focused the last few days as a result of that.
No transfusion needed, pain, nausea, nutrition and hydration all managed = ALL.GOOD.NEWS!!
Of course there is something on the other side of the ledger...you knew that was coming, right?
******
Dad has an extreme amount of cancer related fatigue and weakness. Cancer related fatigue is different than normal fatigue in that it is not brought on by exertion, it is just there, and it doesn't go away after resting. He is extremely weak and fatigued most of the time. There are bright spots {today he went to Target and buzzed around in a motorized wheelchair for an hour - yeehaw!}, but for the most part he is sleeping most of the day and is pretty sedentary, with exception of getting up to go to the bathroom or going to one of his doctors or radiation appointments. His energy level is in the negative.
Cancer related fatigue is brought on by cancer itself {check}, chemo {check}, radiation {check} and meds used to control pain, nausea and swelling {check, check, check}. Basically everything he is doing to fight the cancer along with the cancer itself can cause the extreme fatigue. The combination of it all together only makes it more intense.
Since he is sleepy and fatigued the majority of the time, and is not moving around much, he has gotten a bit shaky on his feet over the last few weeks. In light of that, we went ahead and ordered a wheelchair and a walker. We cannot take the chance of Dad falling right now and hopefully he will be feeling being a little more steady with the help of the walker and that {hopefully} will give him more confidence to get up and move around a bit more.
That is the update for now...we are grateful to be celebrating the laundry list of really good news and we will work through the fatigue and weakness.
****
Sometimes it feels like we are working with a switchboard. Something goes off and we flip a switch {a new treatment, prescription or schedule} and it works. Or it backfires and we flip it off and flip on something else. It's a science experiment. We have no idea what we are doing, we only know that we are committed to doing everything we possibly can to get the best outcome for my Dad. All that we do is aimed at that. Sometimes, it's a moving target, but that's alright. We have our running shoes on. ;)
We are in this together. Thank you for being in it with us. We are so grateful for the support.
....Team Poppa
And...he gained 8 pounds this week! That is HUGE. The nurse said the number and I cheered out loud {and then I asked her to repeat it twice}. Haha. Last week he had lost 8 pounds from the week before, so now he is back to where he was 2 weeks ago. We would have been happy with him just not losing anymore and holding steady, but for him to actually gain weight is great. He is still, of course, about 30 pounds light from where we were in May, but still - we are taking the victories that come our way. This is a victory.
The nurse is continuing to come to the house each day to administer fluid via IV, and he is taking the nutrition well also - we are able to get to the nutrition "quota" almost every day.
Both the pain and nausea seem to be well controlled now and seem to also be abating on their own. We have been able to scale both the pain and the nausea meds way back, so he is a little bit more clear and focused the last few days as a result of that.
No transfusion needed, pain, nausea, nutrition and hydration all managed = ALL.GOOD.NEWS!!
Of course there is something on the other side of the ledger...you knew that was coming, right?
******
Dad has an extreme amount of cancer related fatigue and weakness. Cancer related fatigue is different than normal fatigue in that it is not brought on by exertion, it is just there, and it doesn't go away after resting. He is extremely weak and fatigued most of the time. There are bright spots {today he went to Target and buzzed around in a motorized wheelchair for an hour - yeehaw!}, but for the most part he is sleeping most of the day and is pretty sedentary, with exception of getting up to go to the bathroom or going to one of his doctors or radiation appointments. His energy level is in the negative.
Cancer related fatigue is brought on by cancer itself {check}, chemo {check}, radiation {check} and meds used to control pain, nausea and swelling {check, check, check}. Basically everything he is doing to fight the cancer along with the cancer itself can cause the extreme fatigue. The combination of it all together only makes it more intense.
Since he is sleepy and fatigued the majority of the time, and is not moving around much, he has gotten a bit shaky on his feet over the last few weeks. In light of that, we went ahead and ordered a wheelchair and a walker. We cannot take the chance of Dad falling right now and hopefully he will be feeling being a little more steady with the help of the walker and that {hopefully} will give him more confidence to get up and move around a bit more.
That is the update for now...we are grateful to be celebrating the laundry list of really good news and we will work through the fatigue and weakness.
****
Sometimes it feels like we are working with a switchboard. Something goes off and we flip a switch {a new treatment, prescription or schedule} and it works. Or it backfires and we flip it off and flip on something else. It's a science experiment. We have no idea what we are doing, we only know that we are committed to doing everything we possibly can to get the best outcome for my Dad. All that we do is aimed at that. Sometimes, it's a moving target, but that's alright. We have our running shoes on. ;)
We are in this together. Thank you for being in it with us. We are so grateful for the support.
....Team Poppa
Thursday, August 23, 2012
hello rollercoaster
This week has been a roller coaster. Dad started radiation on Monday and by Tuesday, was extremely weak and tired. To the point that it was concerning, even to the doctor and oncology team. When we took him for his oncology appointment Tuesday, they thought maybe there was an infection, maybe his white blood counts had gone down, maybe his electrolytes were off, maybe his kidneys were not functioning properly. The blood work showed the opposite. Everything looked how it should. White counts were okay. Kidney numbers were off a little, but functioning and doing their job, no electrolyte issue. No sepsis.
At one point while we were waiting in the chemo lounge with all the other patients staring at us, Mom leaned over and whispered: "I don't get the impression that this is normal." All I said was "Mmmhmmm..."
So, as a process of elimination, and with all the dangerous complications ruled out, we realized that maybe we needed to alter some things. Dr. Kosmo (Dad's oncologist) made changes to several medications. He prescribed a new nausea medication which is stronger and dissolves on the tongue. Dad had started refusing to take the anti-nausea med they prescribed because it was oral and hurt too much to swallow. As a result, the nausea was out of control. Dr. K also had my Dad get fluids via IV in the chemo lounge while he spoke to mom and I. The change in Dad post-IV fluids always astounds us. It's like he is a completely different patient. More stable on his feet, more alert, more expression on his face. So, with that, Dr. Kosmo decided that the best thing to is to have a nurse come to the house every day this week and administer fluid directly into the bloodstream, via the porta cath. The nurse starts 1 liter a day and my mom is able to unhook it once it's completed. {We now use words like "hypo" in the Everett household}...
Hydration is a huge key to Dad feeling good. Going through the IV they are also able to add things like potassium and electrolytes, which is even better. Hydrated, Dad uses words like "Indeed!"... Dehydrated, he barely uses words at all. Staying hydrated is turning out to be a huge part of staying in the game.
The drug change combined with the IV fluids is working. The extreme weakness seems to have abated for now, although he is still sleeping quite a bit. The new anti-nausea med seems to be working as well.
He actually asked for ice cream this week:
"Strawberry, but no chunks of strawberry in it. And sherbert. But not sorbet. Pineapple. No not pineapple. Strawberry. Or black cherry. Raspberry. Just make sure it's red."
.......I love my Dad ;) .......He hasn't had a ton, but just the fact that it's going down at all is great.
We are still fighting the weight loss, but do seem to be on the upswing with getting more nutrients in him.
As to the radiation, Dad is on day 3. Today was supposed to be Day 4, but the machine went down. Seriously? The radiation machine goes down?? I'm sure Dad was secretly grateful, but we really wanted to see him get treatment today. If the radiation is effective, it can mean so much. For the 3 days that he has had, he seems to be tolerating it well.
Every day holds its own victories and obstacles. We are doing our best to be grateful for the victories and find solutions for the obstacles.
All the credit for us surviving the daily battle at all goes to my saint of a Mom. There is no one more patient, more loving or strong. She is truly amazing. She never loses her cool, never speaks an unkind word, never gets agitated. She is completely calm, cool, collected...and she is focused on getting the best out of each day for my Dad.
Thank you for the love, prayers, cards and sweet messages. There is lots of pain and heartache in the world. We feel humbled and grateful that you all care about ours.
....Team Poppa
At one point while we were waiting in the chemo lounge with all the other patients staring at us, Mom leaned over and whispered: "I don't get the impression that this is normal." All I said was "Mmmhmmm..."
So, as a process of elimination, and with all the dangerous complications ruled out, we realized that maybe we needed to alter some things. Dr. Kosmo (Dad's oncologist) made changes to several medications. He prescribed a new nausea medication which is stronger and dissolves on the tongue. Dad had started refusing to take the anti-nausea med they prescribed because it was oral and hurt too much to swallow. As a result, the nausea was out of control. Dr. K also had my Dad get fluids via IV in the chemo lounge while he spoke to mom and I. The change in Dad post-IV fluids always astounds us. It's like he is a completely different patient. More stable on his feet, more alert, more expression on his face. So, with that, Dr. Kosmo decided that the best thing to is to have a nurse come to the house every day this week and administer fluid directly into the bloodstream, via the porta cath. The nurse starts 1 liter a day and my mom is able to unhook it once it's completed. {We now use words like "hypo" in the Everett household}...
Hydration is a huge key to Dad feeling good. Going through the IV they are also able to add things like potassium and electrolytes, which is even better. Hydrated, Dad uses words like "Indeed!"... Dehydrated, he barely uses words at all. Staying hydrated is turning out to be a huge part of staying in the game.
The drug change combined with the IV fluids is working. The extreme weakness seems to have abated for now, although he is still sleeping quite a bit. The new anti-nausea med seems to be working as well.
He actually asked for ice cream this week:
"Strawberry, but no chunks of strawberry in it. And sherbert. But not sorbet. Pineapple. No not pineapple. Strawberry. Or black cherry. Raspberry. Just make sure it's red."
.......I love my Dad ;) .......He hasn't had a ton, but just the fact that it's going down at all is great.
We are still fighting the weight loss, but do seem to be on the upswing with getting more nutrients in him.
As to the radiation, Dad is on day 3. Today was supposed to be Day 4, but the machine went down. Seriously? The radiation machine goes down?? I'm sure Dad was secretly grateful, but we really wanted to see him get treatment today. If the radiation is effective, it can mean so much. For the 3 days that he has had, he seems to be tolerating it well.
Every day holds its own victories and obstacles. We are doing our best to be grateful for the victories and find solutions for the obstacles.
All the credit for us surviving the daily battle at all goes to my saint of a Mom. There is no one more patient, more loving or strong. She is truly amazing. She never loses her cool, never speaks an unkind word, never gets agitated. She is completely calm, cool, collected...and she is focused on getting the best out of each day for my Dad.
Thank you for the love, prayers, cards and sweet messages. There is lots of pain and heartache in the world. We feel humbled and grateful that you all care about ours.
....Team Poppa
Sunday, August 19, 2012
chemo day 7
We are at chemo day 7. Chemo is doing what chemo does. It's that simple and it's that complicated. There is extreme fatigue, there is nausea that is never ending and of course, there is constant pain and just general discomfort.
The first 5 days of chemo are the "active" part and thankfully those are behind us. On Day 5, the needle delivering the secondary chemo drug 5FU (I have my own idea on why it's called 5FU, but I'll leave that alone)....anyway, the needle to the porta cath fell out in the wee hours of Friday morning. Dad was scheduled to have completed that treatment and have it removed a few hours later, so that turned out to not be a big deal.
When he had his weekly blood work completed also on Day 5, the numbers showed that he was not getting nearly enough water. Getting enough water to stay hydrated is one thing. Getting enough water when you are undergoing chemo is another. There is no way that he can drink that much water so that is now going through the feeding tube as well. Since too much through the tube at once increases the nausea and bloating the basic plan is a little bit at a time, all day long. That is the only way to reach the intake quotas for both nutrition and hydration.
Since there is so much that needs to be administered in one day, it's really easy to lose track of it all. There are drugs every 12 hours, some every 4 hours, some after eating but not less than an hour before anything orally, etc.....that is not counting the feedings and hydrating either. So, Mom and I sat down and figured out a daily schedule to make sure that we timed it all properly and that he gets all that he needs to fight the fight and stay strong, hydrated, nourished and comfortable. Creating a perfect schedule on paper is way easier than actually carrying it out, but we are getting there. Each day brings its own surprises and we are rolling with the punches.
One another note, tomorrow is day 1 of radiation. Radiation will continue for 5 days a week, for the next 5 weeks. Luckily, the treatment itself only takes 5 minutes each day. If effective, the main tumor will shrink and there will be relief from pain. We are holding out for "effective"...
.JPG)
This quote has been encouraging me lately. We aren't dancing. I'm not gonna lie. We are mostly holding hands and shuffling, but that's okay. We are grateful that we are a family that is filled with love and when one of us hurts, we all hurt. When there is joy for one, there is joy for us all. We are together in sunshine and we are together in rain.
So...No matter what tomorrow brings, we will face it together.
....Team Poppa
The first 5 days of chemo are the "active" part and thankfully those are behind us. On Day 5, the needle delivering the secondary chemo drug 5FU (I have my own idea on why it's called 5FU, but I'll leave that alone)....anyway, the needle to the porta cath fell out in the wee hours of Friday morning. Dad was scheduled to have completed that treatment and have it removed a few hours later, so that turned out to not be a big deal.
When he had his weekly blood work completed also on Day 5, the numbers showed that he was not getting nearly enough water. Getting enough water to stay hydrated is one thing. Getting enough water when you are undergoing chemo is another. There is no way that he can drink that much water so that is now going through the feeding tube as well. Since too much through the tube at once increases the nausea and bloating the basic plan is a little bit at a time, all day long. That is the only way to reach the intake quotas for both nutrition and hydration.
Since there is so much that needs to be administered in one day, it's really easy to lose track of it all. There are drugs every 12 hours, some every 4 hours, some after eating but not less than an hour before anything orally, etc.....that is not counting the feedings and hydrating either. So, Mom and I sat down and figured out a daily schedule to make sure that we timed it all properly and that he gets all that he needs to fight the fight and stay strong, hydrated, nourished and comfortable. Creating a perfect schedule on paper is way easier than actually carrying it out, but we are getting there. Each day brings its own surprises and we are rolling with the punches.
One another note, tomorrow is day 1 of radiation. Radiation will continue for 5 days a week, for the next 5 weeks. Luckily, the treatment itself only takes 5 minutes each day. If effective, the main tumor will shrink and there will be relief from pain. We are holding out for "effective"...
.JPG)
This quote has been encouraging me lately. We aren't dancing. I'm not gonna lie. We are mostly holding hands and shuffling, but that's okay. We are grateful that we are a family that is filled with love and when one of us hurts, we all hurt. When there is joy for one, there is joy for us all. We are together in sunshine and we are together in rain.
So...No matter what tomorrow brings, we will face it together.
....Team Poppa
Wednesday, August 15, 2012
straight through it
Last December, when I was feeling particularly frustrated {at things I would laugh at from where I sit today} I sent the above message to my Dad.
I love what he said:
"When you get to the wall, look for a way around, over, or under it. If that won't work, take a deep breath, buckle up, knuckle down and go straight through it!"
****
There is no way around, over or under cancer. We have to go straight through it.
We are going straight through the nausea, pain, weakness, and extreme fatigue. Today is day 3 of chemo. Each day, the chemo side effects hit a little harder than the day before and each day he and my mom and all of us, keep walking through it.
Each day we wake up, take a deep breath, buckle up, knuckle down and go straight through it.
It's how we made it through yesterday and it's how we made it through today and it's how we are going to make it through tomorrow.
And we ARE going to make it through it.
....Team Poppa
PS In case you are wondering...those letters at the bottom of his message to me:
DLYVMNMW = Daddy Loves You Very Much...No Matter What
Sunday, August 12, 2012
39, chemo, radiation, rocks and vistors
This is kind of an all over place post....It's long. There is your warning.
****
Yesterday was my parent's 39th wedding anniversary. We celebrated at their house with a family dinner (thanks Bub for cooking!). Here are a couple of sweet shots of them taken by a family friend about a week ago:
.JPG)
They are pretty cute, huh?
****
Tomorrow morning Dad officially starts chemotherapy. The chemo is a 5 day on/25 off treatment plan. The 5 on is broken up into two parts. First, he will have a four hour session in the oncologists office in what I am affectionately calling the "chemo lounge" - it's a big room with a bunch of recliner's in a horseshoe with patients hooked up to IV bags. My mom got him an iPad for their anniversary so hopefully that will help pass the time. They will give him some anti-nausea medication through the porta-cath before they start and hopefully that will help with any chemo related nausea. He already has enough nausea as it is. The chemo drug being administered during the 4 hour session on Day 1 is called Cisplatin.
Once that part is over, he will be hooked up with a 5FU pump (basically a fanny pack type deal going straight to the porta-cath) that will continue to administer a secondary chemotherapy drug 24/7 through Friday. Friday, he will return to the office to be "unhooked" from all of that. The chemo will continue to work in his body over the following 25 days, and all the possible side effects will still remain, but the "active" part will be done.
We are expecting increased nausea and fatigue to be the major side effects of the chemo, but we have been told repeatedly that everyone handles chemo differently and we are hoping that his body tolerates it well.
Ideally, the chemo will attack any cancer "seeds" that we cannot see on the scans as well as attacking the cancer in the lymph nodes and blood. Chemo is a whole body treatment meant to kill cells that divide rapidly, one of the main properties of most cancer cells.
****
The second part of the treatment plan is Radiation, which will be used to focus on attacking and eliminating areas where the cancer is present. In Dad's case, the focused area will be the main tumor at the esophagus/stomach area as well as the liver. Last Friday, we met with the Radiologist and discussed this part of the treatment plan. Since the cancer is not in the bone, the Radiologist feels comfortable being "very aggressive". The basic plan is that Dad will have radiation every day, Monday through Friday, for 5 weeks for the esophageal part of things. Radiation treatments will start this week and run concurrently with the chemo. Also within the 5 weeks, there will be 5 days of "radio surgery" to attack the spots in the liver. Radio surgery is similar to standard radiation, except the dose per "fraction" is 5x that of regular radiation. We learned that the liver is typically good at tolerating radiation and the spots in the Dad's liver are not large so we feel fairly confident in this plan.
If the radiation is effective like we are hoping, it's possible that Dad could begin to feel some relief (from the tumor getting smaller and some of the pain decreasing) in just a few weeks. Ideally, the tumor will shrink and the pain will decrease to the point that he will want to eat normally again and hopefully over time, we won't need the feeding tube. That might be getting ahead of ourselves right now, but that is the pot of gold at the end of the rainbow that we are striving for.
We are anticipating increased nausea and fatigue (again) from this treatment as well. Everything related to cancer seems to bring nausea and fatigue. They are cancers unwelcome amigos.
The other unwanted, but expected result from the radiation is the "radiation effect", a sunburn feeling (inside and outside the radiated areas). This will go away a few weeks after the radiation is over, and hopefully the tumor will be gone then too.
****
After we met with the Radiologist, Bub, my parents and I crammed into my parent's car and I read a note from a good friend of mine out loud. It said:
"Dear Amber,
These are for you to do whatever you like. I held them when I went thru radiation for my brain tumor. I think they work. We are praying and thinking about you guys every day."
.JPG)
It was really special to us that she had passed on something so meaningful to her. I am not calling you out by name here, but you know who you are and I want you to know that it meant a lot to us.
****
I don't know how to handle this last part of the post with the most tact or sensitivity, so I'm just going to be honest. Dad is not in a place right now to have visitors. Part of that is because he needs to get all the rest he can to keep his immune system strong enough to fight the cancer. Part of it is because he has waves of incredible pain throughout the day and has almost no energy. Aside from a few hours in the morning, he is pretty lethargic and even the smallest activity really wears him out. Part of it is that he is still processing all of this mentally and just isn't in a mindset to have people over. He flat doesn't feel up to it.
Once we get past this first few weeks of treatment, hopefully that will change. We don't want to hurt anyone's feelings and we are beyond grateful that there is so much love and support for him on this journey. But, if you know him, you know that he is a pretty proud and stubborn guy and being "sick" doesn't really line up with that. (For the record, his stubbornness and pride is not easy for us either!) But, his toughness and feisty nature is part of what he needs to fight this battle and part of what makes him the survivor he is. He needs some time to adjust and he needs to be able to call the shots on what feels comfortable for him and we want to support that.
We'd love to get to the place where we can set up some Skype and phone call sessions that work with his energy level (early am). We are not there yet, but hopefully we will be. I'll keep you posted on that.
Thank you for the prayers, thoughts, hugs, comments, messages and Team Poppa photos. If there is any certainty in all of this, it is that we know for sure we are loved and supported.
....Team Poppa
****
Yesterday was my parent's 39th wedding anniversary. We celebrated at their house with a family dinner (thanks Bub for cooking!). Here are a couple of sweet shots of them taken by a family friend about a week ago:
.JPG)
****
Tomorrow morning Dad officially starts chemotherapy. The chemo is a 5 day on/25 off treatment plan. The 5 on is broken up into two parts. First, he will have a four hour session in the oncologists office in what I am affectionately calling the "chemo lounge" - it's a big room with a bunch of recliner's in a horseshoe with patients hooked up to IV bags. My mom got him an iPad for their anniversary so hopefully that will help pass the time. They will give him some anti-nausea medication through the porta-cath before they start and hopefully that will help with any chemo related nausea. He already has enough nausea as it is. The chemo drug being administered during the 4 hour session on Day 1 is called Cisplatin.
Once that part is over, he will be hooked up with a 5FU pump (basically a fanny pack type deal going straight to the porta-cath) that will continue to administer a secondary chemotherapy drug 24/7 through Friday. Friday, he will return to the office to be "unhooked" from all of that. The chemo will continue to work in his body over the following 25 days, and all the possible side effects will still remain, but the "active" part will be done.
We are expecting increased nausea and fatigue to be the major side effects of the chemo, but we have been told repeatedly that everyone handles chemo differently and we are hoping that his body tolerates it well.
Ideally, the chemo will attack any cancer "seeds" that we cannot see on the scans as well as attacking the cancer in the lymph nodes and blood. Chemo is a whole body treatment meant to kill cells that divide rapidly, one of the main properties of most cancer cells.
****
The second part of the treatment plan is Radiation, which will be used to focus on attacking and eliminating areas where the cancer is present. In Dad's case, the focused area will be the main tumor at the esophagus/stomach area as well as the liver. Last Friday, we met with the Radiologist and discussed this part of the treatment plan. Since the cancer is not in the bone, the Radiologist feels comfortable being "very aggressive". The basic plan is that Dad will have radiation every day, Monday through Friday, for 5 weeks for the esophageal part of things. Radiation treatments will start this week and run concurrently with the chemo. Also within the 5 weeks, there will be 5 days of "radio surgery" to attack the spots in the liver. Radio surgery is similar to standard radiation, except the dose per "fraction" is 5x that of regular radiation. We learned that the liver is typically good at tolerating radiation and the spots in the Dad's liver are not large so we feel fairly confident in this plan.
If the radiation is effective like we are hoping, it's possible that Dad could begin to feel some relief (from the tumor getting smaller and some of the pain decreasing) in just a few weeks. Ideally, the tumor will shrink and the pain will decrease to the point that he will want to eat normally again and hopefully over time, we won't need the feeding tube. That might be getting ahead of ourselves right now, but that is the pot of gold at the end of the rainbow that we are striving for.
We are anticipating increased nausea and fatigue (again) from this treatment as well. Everything related to cancer seems to bring nausea and fatigue. They are cancers unwelcome amigos.
The other unwanted, but expected result from the radiation is the "radiation effect", a sunburn feeling (inside and outside the radiated areas). This will go away a few weeks after the radiation is over, and hopefully the tumor will be gone then too.
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After we met with the Radiologist, Bub, my parents and I crammed into my parent's car and I read a note from a good friend of mine out loud. It said:
"Dear Amber,
These are for you to do whatever you like. I held them when I went thru radiation for my brain tumor. I think they work. We are praying and thinking about you guys every day."
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The day before she had left the note and these silver stones at our house. The four of us each picked one. Bub picked miracle, my mom picked recovery, and I took magic and gave my Dad comfort. (He wanted to be last to pick).
It was really special to us that she had passed on something so meaningful to her. I am not calling you out by name here, but you know who you are and I want you to know that it meant a lot to us.
****
I don't know how to handle this last part of the post with the most tact or sensitivity, so I'm just going to be honest. Dad is not in a place right now to have visitors. Part of that is because he needs to get all the rest he can to keep his immune system strong enough to fight the cancer. Part of it is because he has waves of incredible pain throughout the day and has almost no energy. Aside from a few hours in the morning, he is pretty lethargic and even the smallest activity really wears him out. Part of it is that he is still processing all of this mentally and just isn't in a mindset to have people over. He flat doesn't feel up to it.
Once we get past this first few weeks of treatment, hopefully that will change. We don't want to hurt anyone's feelings and we are beyond grateful that there is so much love and support for him on this journey. But, if you know him, you know that he is a pretty proud and stubborn guy and being "sick" doesn't really line up with that. (For the record, his stubbornness and pride is not easy for us either!) But, his toughness and feisty nature is part of what he needs to fight this battle and part of what makes him the survivor he is. He needs some time to adjust and he needs to be able to call the shots on what feels comfortable for him and we want to support that.
We'd love to get to the place where we can set up some Skype and phone call sessions that work with his energy level (early am). We are not there yet, but hopefully we will be. I'll keep you posted on that.
Thank you for the prayers, thoughts, hugs, comments, messages and Team Poppa photos. If there is any certainty in all of this, it is that we know for sure we are loved and supported.
....Team Poppa
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