Well, I guess its time I make a guest appearance o... Well, I guess its time I make a guest appearance on this blog.
I really appreciate Erin's efforts here. She makes me a little nervous every time she says "Hey Dad! Have you seen my new post?"
I just want to thank all of you for your thoughts and prayers. I know there is a critical mass for prayers, and I am sure I am there! Keep it up!
I am so very grateful for everyone's patience with me at my work. I know you guys are carrying extra, but I promise I will catch up as soon as I can.
All my church family: your prayers, support and service is wonderful. I really feel loved and look forward every day to my prayers, support and service I can give for you. It is truly a motivator for me.
And of course my family, from coast to coast and far abroad: I love you all.
...And for those who might read this who are my good friends from CANADA - congratulations on your Hockey victories. After all, it is your game and you deserved to win in some real tough games. At least they were really great final games!
Turns out I exaggerate a bit... I don't really consider this a character flaw, but more a strength of mine. I am more of a "cup half full" kind of gal. Perhaps this trait came threw a bit on my last post.
So, dad had one really great day where he was able to swallow normal food. It was a good day and one that looked incredibly promising and seemed as though he was really turning a corner. This looked like evidence to us that everything was going to be normal again. Of course, that isn't how cancer works! DUH! Us "cup half full"ers are so naive sometimes.
As it turns out, not much has been staying down since that one good day. This isn't fantastic as it means that dad has lost even more weight. -- Apparently, the way that weight loss works is that the less you eat, the more you lose. I know, total epiphany to me too. I had to write it here to perhaps document that philosophy for my own future personal use. -- Anyway, speedy weight loss is a dream to most of us but we are trying to keep the pounds on dad not have him losing anymore.
After this 6 week chemo and radiation cycle, he will have 6 weeks off and then he will undergo surgery. This will be a pretty big surgery which will basically cause him not to be able to swallow food for many weeks and he will probably lose a good 25 pounds over that time. Therefore, losing all this weight now is NOT AN OPTION! Sure, we plan to fatten him up plenty the six weeks prior to surgery but we don't want our job to be harder than it has to be.
My dad is a practical sort of guy. He fully intends to keep trying to eat as many calories as he possibly can, but he also knows that he might also need to supplement this effort with some help from the doctors. Monday he goes to MD Anderson for his big day where they hook him back up to the chemo drugs and zap him good with radiation (he goes for radiation 5 times a week M-F and receives the chemo drugs through his port M-F as well before being disconnected on Friday). After Monday's appointment, I will talk about this more.
On the brighter side of things, we went to Pappadeaux's last night and dad was able to down some most delicious lobster bisque. He said he felt a lot better after that. I guess you don't really pay attention to how your body reacts to the fuel of food until it doesn't get what it needs. So, the solution as I see it is for us to eat at Pappadeaux's more often. Done and done. I mean, after all, has anyone tried that crab & artichoke cheese dip? It is so delicious, I could drink it up with a straw.
Dad ate dinner with us last night. He actually ATE it. He didn't drink it, he really did eat it. That's a big thing as it has been a couple months since he has been able to do that. Certainly we are excited not to have to witness him grinding up dinner into a brown sludge of not so appetizing appearance, but mostly we are excited because this would make it seem as though the tumor is shrinking and the chemo/rad is already doing its job.
Yesterday, my dad had some biscuits and gravy with sausage and he ate it all up! (which is good because it would have been a cryin' shame to waste biscuits and gravy as it is my favorite breakfast meal). Then he was able to eat a good portion of his lunch and then he ate all of his dinner without having to excuse himself from the table! This is good news as he was becoming a little too familiar with the porcelain at my house. Then I made sure to stock up on extreme moose tracks ice cream which he made sure to have a heaping helping of.
My mom took my dad to the grocery store with her yesterday. Apparently that was a mistake and she vows (as she's done many times in the past) not to ever let my dad go to the grocery store since he about bought everything that they offer at Kroger. This is also wonderful news and he is quite excited because his appetite is back! Obviously there is enough shrinkage of the tumor--I seriously cannot use the word "shrinkage" without my mind going to that Seinfeld episode-- anyway, enough shrinkage of the tumor that his appetite is increasing and food can make its way down the hatch.
Now we can fatten our daddy up! I am planning on quite a feast this weekend to celebrate my dad's birthday. I think I would be in trouble if I put his age, but let's just say he is 25 years older than me!:) He bought lots of steak and some seafood to celebrate...mmmm...this is the reason I moved so close to home. Maybe now that he is able to get some food down, he might be worth taking to lunch again.
This is a recent event so we hope it stays this way as it must be pretty frustrating not to eat. I know that I can hardly survive when I am unable to have access to food for an hour so I can't imagine the frustration of knowing you need to eat but not being able to. So high fives all around for this success!
As you all know, chemo/rad started last week. Fanny pack has been acquired, drugs are being pumped and now we just kind of sit around and wait for it all to work. Dad has been busy doing what he does... work, church stuff, being our dad, etc.
I was curious as to how he felt so I asked him and he said, "Oh Eri I'm fine. I guess I am feeling nauseous a lot and pretty tired here and there, but really it's nothing worse than I expected".
To which I responded, "sounds like how I feel when I'm pregnant. Is that how you feel when you're pregnant?"
"Well, Er, I've never been pregnant before but I'm sure it's the same thing".
I knew it. Having poison pumped through your system really is about the same as having a baby inside you.... no wonder I find it so miserable! But, thankfully, after I'm pregnant, I realize the result of that pain and discomfort is worth it and so much better when it's over. Even if it isn't exactly like pregnancy, I'm thinking it all is worth it and we will all be better when it's over.
And so far, I haven't notice the extreme mood swings from my dad that usually accompany my pregnancies but if I am calculating the treatment time correctly, we are still in the first trimester.
Chemotherapy and Radiation started today!! Woo ha! I think the whole family is just happy to make a little progress on this stupid cancer thing. For something so serious as cancer, it really seems like things move VERY slowly. Anywho, I was my normal, annoying self calling and texting my parents all day seeing how everything was going. Mom dutifully reported... all of dad's bathroom trips, nose blowing, shoe tying and all other mundane happenings. I thought it would be so cool to be there for the start of the chemo/rad but I had to stay home to let Toby (my parents' dog) out to pee. Why am I always stuck on dog duty!?
Here is an excerpt from the email my dad sent to me...I think you can see where his spirit is at these days...
Well, I am sure it is too early to make this brash claim, but this ain't no thing!
I have asked for a tour of the proton accelerator device that facilitates the proton beam. I invited Maureen to go too but she is not as excited about it as I am. I am really excited to see it. I guess its still that old engineer hidden away inside. Oh, I hope they don't blast that part out too!
Well its 5:15 and I have been juiced and zapped! I am pretty sure I made some cancer history today ...at least a few cells are history (dead)!
Dad gets to wear a fanny pack!! I know, I am laughing about it myself right this minute... it is black, not like the purple or hot pink that I was envisioning, but nonetheless, I think we can still refer to it as his 'man purse'. Or at least I will. It is the pack that holds the chemo drugs or whatever other drugs they want to pump him full of. You probably wouldn't even notice it if you saw him with it (unless you were staring and wondering why he is accessorizing with a man purse...). A little tube goes up into his central line and doses him.
I haven't seen Dad with his fanny yet, but I did get quite the show yesterday as I watched Mom flush out Dad's central line. It was such a weird sight that we all were laughing so hard at how it looked like mom was really giving dad some really 'good stuff' through his central line! It was just such an odd site seeing my mom with a syringe that she was putting in Dad's arm. Pictures were involved for posterity, but probably not for this blog :).
Well, not an actual heart attack, just some decorations, but I bet I gave a bunch of you one just by the blog title, didn't I!? I'm hilarious!!!... Anywho....Seeing as it is lover's week, someone went ahead and gave my parents' house a "heart attack". It was really fun to pull up to the house (they weren't home at the time) and see all the hearts and to know people were thinking of them. Lucky for them, the dog didn't bite their faces off... you know, since Toby is such a good guard dog and all.
In other news, our church youth are doing a service project where we deliver mulch and spread it to paying neighbors. I am a leader in the youth program and I had my mom bring my dad's truck up to me to help haul. Last year, my mom and dad were big helpers for this project, but this year my mom wouldn't let my dad even drive with her to drop off the truck for fear that he would try to lift huge bags of mulch and expend all his energy or hurt himself now that he has that central line in (and yes, I totally got to see it... for some reason I thought it would be more cool lookin', oh well). Rest assured dad, you helped out... I managed to use up a quarter tank of your gas and also found a couple extra bucks in one of the cubbies that I am sure you were keeping safe there for me to pocket. Thanks Daddy!
Yesterday, Dad went to good ol' MD Anderson to have a central line put in. It will act as a chemotherapy port which will allow the chemo drugs to be administered and will also allow the nurses to get as much blood as they need through it instead of having to poke him a million times... those blood suckers. Apparently when you have cancer they want to take all of your blood from you--maybe they are still bleeding people to help cure them :). Actually, there is just a lot of testing involved and cell counts they need to keep track of and it also helps them to see what's working and what's not.
Technically this is minor surgery, but Dad said the actual 'implantation' took about ten minutes. He had to lay down and a nurse shaved his upper arm area where they put the line in. ---For some reason, I thought it was hysterical that a male nurse shaved him, but I think Dad thought I was being dumb because it was just a little area and it was a professional doing it...but still funny, right? I even asked if he used a regular razor or an electric. Electric.--- Anyways, a local anesthetic was used and they put this tube in his arm and it goes through to his chest. This will allow the medicine to be delivered both quickly and efficiently.
The portacath is located on his upper right arm. He said it is only a little sore and it shouldn't really bother him after a day or so. Dad said it was basically just an IV--- So, now I am going to consider any time I get an IV to be minor surgery.
My parents both have to attend a class to learn how to take care of the port (or central line or portacath or whatever...it has a million names). If they don't learn then my dad would have to go in just for them to flush it out every day. So, they have to take this class... TWICE. They took one yesterday and are taking one today. My mom texted me just a few minutes ago complaining about how stupid some people are as they ask the same questions over and over, but perhaps it is just their first class and perhaps not all people can be as smart as my momma. :) BTW, my mom passed the course with flying colors!!!
I saw my dad last night while I was at the church and I really want to see what it looks like-- I think my dad is sensing he might need to set me up with some boundaries--- but there were too many people around and that might have been strange to do that at the church! I have an uncle who had open heart surgery a couple years back and I thought it was so cool when he showed me his scars. I must have some sort of strange interest in seeing people's scars/markings, etc or something. Anyway, CHEMO/RAD STARTS TUESDAY!
My dad recently received his schedule for the chemotherapy and radiation (and other appointments). It is kind of ridiculous. He is supposed to have appointments at 7 in the morning, 1:30 in the afternoon and then daily 6 pm appointments. During all this he is supposed to still be living his life as normally as possible. Really!?
My parents are working on getting this scheduling changed up. I mean, MD Anderson isn't exactly next door and with parking at $10 a pop for each visit (don't get my mom started on the parking...) this is really not a reasonable option. Of course, through all this they also want my dad to be able to have the rest he needs to recover...and when is he supposed to get this rest??? I guess in the car to and from the hospital.
That's right, my dad is all tatted up now. Never thought my dad would get a tattoo (thought for sure I would have gotten one myself and him already making me get it removed before this would happen), but alas the day has come. Dad's got himself some serious ink.
Alright, it isn't as cool as I am making it sound or as middle-life crisis driven either... The 'tattoo' marks areas that will help the radiation machines pinpoint or triangulate the area for precise radiation therapy. I know, it really did sound a lot cooler before you knew what it really was, huh?
Still I think Dad is happy to be able to watch the surprise on people's faces as he reports about his new tattoo.... though I plan on calling it forever his 'tramp stamp'.
Today my parents met with the oncologist who said that my dad will have a tri-modial program. His program will consist of chemo/rad & surgery (not the chemo then chemo/rad, surgery) . He will probably start treatment on the 16th of Feb for 5 ½ weeks. Then take about 5-6 weeks to recoup before having surgery sometime in May. He will work just about everyday up until surgery and probably be about 6-8 weeks to get back to work.
After listening to all the experts (MD ANDERSON Doctors), it has been made clear that cancer is a very personal disease. Each person responds differently and statistics are not the real measure. Dad is psyched and ready to go on the offensive.
Dad made this whole spreadsheet listing what days he does what treatments or has what appointments. It is color-coded, has a calendar, it probably includes pie charts and formulas as well... those engineer minds (sigh).
It has been a week or two since we have been dealing with this idea of cancer. The unknowns and many of the knowns are really scary things to hear about and to deal with. However, there is so much that is out of any of our control so we would be better off putting it out of our minds until we have to think about it. People normally spend most of their time worrying about those things they can't control and not worrying about what they can.
Dad is feeling really good. In the past 2-3 weeks he has actually gained a little weight! He has been able to throw his meals in a blender. Btw, all food together turns brown in a blender... must be why it is that color coming out of us!--it's absolutely disgusting and he is not allowed to use clear cups at the dinner table. He has made up some pretty nasty meals in the blender and has been more than excited to eat, I mean drink, it all right up! He has had more energy in the past couple weeks than we've seen him have in months. He is working really hard to get all the vitamins and nutrients that his body needs in him (via blender, of course). He tries to constantly have something with him to eat and has most his desk at work lined with smoothie, soup and juice cans. It really looks like he is selling food out of his cube. He gets exercise a couple times a week and is working on keeping his body active and strong to be able to handle what he will have to in the upcoming months. He has been able to keep up with his church calling and feels good about where things are at for the moment.
The hardest part of all this for Dad has been telling everyone. Us kids each have handled it in different ways, because we are all different but also because the immediate concerns will affect us differently as some of us will be impacted directly and others indirectly. As for me, I found out about a week and half ago now and I feel like I've been in a daze ever since. Mostly I just keep thinking about how this all just feels like some sort of alternate reality. For me, I am more of an obsessive personality and so I have been going through different phases like finding as much information as I possibly could, following my parents around like a lost puppy or feeling the need to ask my parents five million questions. I guess we each handle things differently. Considering all, I think us kids are doing ok for the most part.
My mom has been so strong! She really shows her strength in difficult situations and is able to handle most everything thrown her way. Certainly this is a huge, terrifying blow which she will never get used to dealing with. Most of the emotion, for all of us, comes in waves. When the moments are quiet and nothing else is happening around us, I would guarantee that our minds make their way back to thinking about my dad and the battle ahead.
Telling other family members has also been difficult. I know it was hard for my dad to tell his brothers as this isn't the first serious fight they're family has had to fight. Plus, since they are siblings and of a certain age (:)), they are also at risk and need to get themselves checked out. Dad told the members at our church this past Sunday and that was difficult... for all of us. Mostly I think he just wanted everyone to know that he wasn't the only person with trials and that he could still perform his church callings and wants to receive the blessings of serving others.
All that being said, we are ready for battle!! We all feel a lot more confident knowing our game plan and knowing that our star player (my dad) is strong and ready to win. Our family is strong and we protect each other the best we can. All of us plan on being here to support my dad and help him in any way we can. I told my mom that dad's job is to beat this thing and her job is to take care of dad and my job is to take care of her.
For the most part, we are all in a good place where we are confident in my dad's opportunity to beat this. If anyone can do it, he can. And that's the truth.
It would be impossible not to think about the preparation that our lives have gone through to be ready to fight this cancer. There are so many things that we have all gone through this year that has prepared us to unite together as a family to fight this. We are incredibly blessed and fortunate. While in a dire moment, I admittedly wished this on someone else, but I don't know a more competitive, strong-willed and united family as ours. My brother J told me the other day, "You know Erin? I think Dad's chances are more like 90 or 95%. Those doctors don't know what we know"... you know, I think he's right.
This is an excerpt from an email that my mom wrote out to us kids and other family members after they met with a couple more doctors.. I couldn't say anything better than she says it here...
We met with Bill's surgeon. We really liked him. He is the Head of the Department. So this makes two department heads on our team. Bill won't actually have surgery until sometime between May and July, but he did go over the actual surgery. He really didn't give us any new information. When they remove the section of the esophagus, they will also remove part of his stomach (he gets a free bypass with this). He will probably never have to worry about his weight again.
We also met with his radiation doctor. Again, we really liked him. Don't know if he is department head or not, but he is good looking, so that makes him okay in my book! Bill will either start Chemo and Radiation on 2/16 or if we get the clinical trial we are hoping to get, then he will just start chemo alone on 2/9 and the chemo/radiation combo will be held off for two months. We will know on Thursday if he gets the clinical trial or not. I guess the biggest question we were left with at this appointment is whether they will use proton or photon radiation depending on what our insurance will cover. Either is good, one is just a bit better at protecting the heart since the esophagus sits right behind the heart. Other then having to go down every day for six weeks, it sounded like this is all going to be bearable. The good news we got from this appointment is that we get free parking during radiation days! We thought we might have to take out a second mortgage on the house to pay for parking at this place! If they aren't making money on the medicine, they are making a ton on the parking!!
Our next step is on Thursday. He will have an EKG, a pulmonary test and see the oncologist again. At that appointment we will learn which treatment option we will have and he will finalize the orders for the upcoming weeks.
Apparently, there are hundreds of chemotherapy medications out there each designed to handle different cancers, different cells, different areas. The chemotherapy that he will use to help kill all those cancer sleeper cells will apparently not have many side effects. Each body reacts differently to medication, but we hope that this will be true for Dad.
Dad won't lose his hair (he was real concerned about that), won't lose his eye brows (I was admittedly sorry he wouldn't lose those bad boys), will still be able to go to work and fulfill his church callings and shouldn't be affected too much at all. He will probably be more easily fatigued and may feel nauseous at times, but should be able to live his life regularly besides. He will still be able to go to the gym and be active.
Dad will likely be carrying around a small back pack... or "fanny pack" as I like to think of it (kinda hoping they'll give him a hot pink one) which will administer him the chemo drugs. I am not sure about all the details about that, I am sure when he starts I will be able to update that more with further information.
Radiation will happen with chemo -with the second round of chemo if he gets the study's new treatment plan- which will shoot the tumor to shrink it down. Radiation is a little tricky with esophageal cancer because of it's location so close to the heart. Hopefully he will be able to fatten himself up before the big surgery once the radiation shrinks the tumor down. I'm willing to join him in the fattening up process to show my support... that's what family does, you know.
FINALLY!!! It felt like we were playing some sort of mean waiting game after we found out. We just knew what he had but nothing else and no one to give us more information. On January 28th my parents met with the oncologist at MD Anderson. He is the head of the department, best in his field and works at the #1 CancerCenter. You can't beat that! They came up with a plan.
Until recently, esophageal cancer was only treated by surgery and was not incredibly effective. But just in the very recent couple of years they have started using chemotherapy and radiation before surgery and have seen significantlybetter results.
My dad had the option of proceeding with the chemo, rad & surgical treatment or to participate in a study which has been showing some promising results. The study will randomly pick my dad to either do the traditional treatment of 6 weeks of chemo & radiation, 6 weeks off and then surgery or the new treatment plan of 6 weeks of chemo, 6 weeks off, 6 weeks of chemo and radiation, 6 weeks off and then surgery. He will find out which he gets on February 4th.
My dad is 1 in a million so I am pretty sure he can beat whatever is thrown at him. So, at this point we are hoping to hear what treatment plan he will get. He thinks either will be manageable and will be content with whatever he is randomly chosen for. In participating in this study, he at least gets a shot at the new treatment plan.
We are grateful for the outpouring of love and support that we have received!! To respect our own privacy, we will not be including our last name in our posts and would ask that you not use our last name in any of your own internet writings. Thank you again and feel free to ask us any questions.
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