Here is the update from today! Sorry for typos and whatnot, but we are working from an iPhone:
Hi! So yesterday after the transplant, I didn't update bc it was just kind of shocking.
He had a central line in his neck with 4 ports going in and one in his groin. He has 2 drainage tubes for blood out of his stomach. A ventilator. His arms were restrained down to the bed so he wouldn't move and try to pull out the ventilator. A tube from his stomach to drain blood and stomach secretions. And multiple IVs in his arms. He was extremely swollen, and the meds that they have to "sedate" him, actually put him in a medically induced coma. He wasn't responsive at all. Pale grayish in color. He had blood around his nostrils, which indicated that he had a nose bleed on the table.
They did an ultrasound to take a look at the new gear (liver)... And in his unresponsive state, his entire face crumpled up and he started moving his legs, indicating a ton of pain. It was pretty disturbing to see. And I made him stop and give him more pain meds.
I honestly didn't know how to feel because it was so shocking.
Anyway, today is a new day. This morning, he passed his spontaneous breathing test (amazing!). So they were able to take him off the ventilator, and he was responsive! His first notes he wrote were saying that the ventilator was annoying. :). He has been in and out, but his color is getting better. He feels super heavy, and swollen, and his arms are heavy and he isn't in control which frustrates him. They also gave him a morphine button.... Which we keep have to remind him to push, bc he is so stubborn ;)
He also told me that he needs to pee... And I smiled and told him he has a catheter and a bag so he was covered.
He told me that mentally he was all there (uhhh... I say somewhat only!) but his body isn't catching up.
Now they are about to take the central lines out of his neck and groin. And when they do, he will start to breathe into this spirometer, so that he won't get pneumonia. And the arm restraints are gone.
His new liver is responding well! His function numbers are good and going down (a great sign that it is working!).
We also got the end of the bed taken off, bc he is so tall. Hahah.
It has been a crazy crazy ride. And fortunately, I was able to get home last night to help
Put the twins to bed. I'm exhausted, but it is worth it. But, we are getting through it. It is amazing to see him responding and talking to us. It is getting Better every hour.
I was finally able to breathe this morning when I saw him, because he gave me a sign. When we first started dating, before we told each other that we loved each other, I used to squeeze his hand 3 times... It was my way of telling him "I love you" and he would squeeze back.
I told him later what the 3 squeezes meant. And ever since then, he would always respond with 4 squeezes for "I love you too."
This morning, when i thought he was asleep, I gave his hand 3 squeezes... And he squeezed back 4 times. And it was then that I realized that i finally exhaled... And that it will be okay. And we will be fine
Monday, May 30, 2016
Sunday, May 29, 2016
5/29/2016 - A Post to all while I'm under the knife
The beauty of technology is helping to make us feel more connected and more supported. Many of you have reached out to add your support to our on-line coordinated support site, Lots-a-helping-hands. If you have not and you want to, please navigate to the link: https://www.lotsahelpinghands.
I'm able to write this post now hours ahead of the surgery, and schedule it for when I go under. Like a new age message in a bottle.
I can tell you already that my family and friends, that closely surround me, will be exhausted. I can tell you that I will be in pain (after having an organ taken out when I was 7). I'll can tell you that I'll be grumpy, groggy, and I likely won't feel like doing much.
I hope my kids understand and do not get upset with me, I know they need their daddy, and I know my wife needs her husband. That's why I need each of you to step up as best you can while I can't.
The out-pour of help is great, the texts, the e-mails, and the meals.....just keep in mind, this is a marathon. When summer picks up and you all are enjoying it ... we would love to be carefree and healthy to enjoy it with you. If we can't this year, we at least want to be smiling with you all. Just check in with us, share photos of your kids smiling, eating ice cream, call Tessa to check to see if she's doing ok. I mean that. Go ahead, use your google calendar to setup a random reminder or two over the next 3 months to ping her and talk. I'm challenging you to that.
As for me, Tessa can attest that I've got a pile of 10 books or so that I need to get through, several shows I can binge watch, and need to keep as strong and healthy as I can. I will likely try to isolate myself until my immuno-suppressant meds and I meet at an agreeable place and stabilize over the coming months. I will be very cautious of visitors and seeing if I can keep my kids as healthy as possible. If our kids get sick then I will need to be isolated from them too. I anticipate this to be the most crushing when I recover. Don't take it personally, it's all business.
To my mother, father, and sister:
I love you all more than you know and appreciate everything you have offered to me over time. How caring and understanding you all have been for all the medical crap I've had to deal with. I know it's upsetting to you all but you've been good sports and life has actually played out swimmingly well minus this setback.....such a far cry from what I thought might happen when I was 7. I'm going to fight this as battle as best I can. Keep Tessa Surrounded with your love, I'm so happy you're in our neighborhood now.
To Tessa, Leila, Eli:
You all mean the world to me. God willing, we'll all get through this together. They say the odds are way in my favor and so we have to believe in that and trust the skilled hands of the surgeons and hospital workers. I know it's hard when we want to control things, but we can't. So, we focus on things we can. Tessa, reminder to setup kids doctors so other care takers can take them to appointments if needed. Lean on my family and yours, lean on Lara, lean on Tita Shelly and GG, lean on all of those folks who are strong while it's hard for you. They will keep us all afloat.
To change your organ donation status (Thanks Morgan!):
http://www.dmv.state.va.us/drivers/#organs.asp
I'm able to write this post now hours ahead of the surgery, and schedule it for when I go under. Like a new age message in a bottle.
I can tell you already that my family and friends, that closely surround me, will be exhausted. I can tell you that I will be in pain (after having an organ taken out when I was 7). I'll can tell you that I'll be grumpy, groggy, and I likely won't feel like doing much.
I hope my kids understand and do not get upset with me, I know they need their daddy, and I know my wife needs her husband. That's why I need each of you to step up as best you can while I can't.
The out-pour of help is great, the texts, the e-mails, and the meals.....just keep in mind, this is a marathon. When summer picks up and you all are enjoying it ... we would love to be carefree and healthy to enjoy it with you. If we can't this year, we at least want to be smiling with you all. Just check in with us, share photos of your kids smiling, eating ice cream, call Tessa to check to see if she's doing ok. I mean that. Go ahead, use your google calendar to setup a random reminder or two over the next 3 months to ping her and talk. I'm challenging you to that.
As for me, Tessa can attest that I've got a pile of 10 books or so that I need to get through, several shows I can binge watch, and need to keep as strong and healthy as I can. I will likely try to isolate myself until my immuno-suppressant meds and I meet at an agreeable place and stabilize over the coming months. I will be very cautious of visitors and seeing if I can keep my kids as healthy as possible. If our kids get sick then I will need to be isolated from them too. I anticipate this to be the most crushing when I recover. Don't take it personally, it's all business.
To my mother, father, and sister:
I love you all more than you know and appreciate everything you have offered to me over time. How caring and understanding you all have been for all the medical crap I've had to deal with. I know it's upsetting to you all but you've been good sports and life has actually played out swimmingly well minus this setback.....such a far cry from what I thought might happen when I was 7. I'm going to fight this as battle as best I can. Keep Tessa Surrounded with your love, I'm so happy you're in our neighborhood now.
To Tessa, Leila, Eli:
You all mean the world to me. God willing, we'll all get through this together. They say the odds are way in my favor and so we have to believe in that and trust the skilled hands of the surgeons and hospital workers. I know it's hard when we want to control things, but we can't. So, we focus on things we can. Tessa, reminder to setup kids doctors so other care takers can take them to appointments if needed. Lean on my family and yours, lean on Lara, lean on Tita Shelly and GG, lean on all of those folks who are strong while it's hard for you. They will keep us all afloat.
To change your organ donation status (Thanks Morgan!):
http://www.dmv.state.va.us/drivers/#organs.asp
Saturday, May 28, 2016
5/28/2016 - The Latest...like an plane in O'Hare....delayed
Around lunch, the surgeon came in to tell me that the organ donor harvesting team had not yet assembled to remove the organs (they harvest many organs from the donor to save as many people as possible). They anticipate that to start at 11pm EST on 5/28. With the removal taking some hours, and then the liver needing a biopsy, I'm scheduled to be on the OR table at 5AM 5/29. Of course, any or all of this is still subject to change.
The best news is that I was able to eat lunch (up to this point I was Starvin' Marvin). My metabolism has been geared up because I played soccer night before last (crazy to think that), and I didn't eat for 14 hours. Lunch is in my belly now and I've been told I can have a light dinner which I'm excited about too. Tessa got me some dark chocolate so I'm all set to watch the Champions League final from my bed at the hospital.
The kids are able to come and visit so I can see them before I get too beat up and so I can try again to explain what's going on to them.
Thanks for your continued notes, thoughts, and prayers as we wait. (Also, thank you all for signing up on the site listed in the previous blog post).
Best,
Matt
PS - Funny or Not Funny? When the nurse was checking me in last night asking what valuables I had, the mood was pretty dark. I said calmly, Laptop, Cell Phone, Charging cords, and $25,000 in cash. She shot a look over at me and I was smiling....my wife was not amused but I was laughing at it.
5/28/2016 - Turn Shit into Sugar: Opportunism
Have you ever seen the Geico commercial, where the former NFL player, Ickey Woods is at the grocery deli? And when his ticket number is called, he starts doing this touch down dance yelling "wool! 44 that's me!! Get some cold cuts! Get some cold cuts!! Wooo!"?
We love that commercial. If you see Leila, she will actually say it for you. Makes us laugh all the time. But I digress.
Well. Last night after we put the kids to bed, that was us. Our number finally got called. We got our second call from The Georgetown Liver Transplant Coordinator at 10:32pm. A 33 year old woman, local, around the same size as Matt, healthy, low risk... Unfortunately had a stroke while having a c-section, and passed away. She was listed as an organ donor. She qualified as a perfect match for Whitey.
(I know. It is hard to even write that down as parents... Much less to be joyful that that is our option. But, that is our reality.)
Anyway, Matt is the primary recipient of her liver, and there is a secondary recipient and possible tertiary recipient waiting for it here at Georgetown, in case last minute Matt does not qualify. We immediately called Matt's parents and Bill (my father in law) came over immediately to watch the kids overnight.
We woke the kids up, and did a White family hug. Told them that we loved them, and that daddy is going to the hospital. Eli didn't seem to understand, but Leila looked pretty concerned.
We got into the cancer car, and got over to the Georgetown ER. Matt only went through one semi red light. (I'd call that a win!!). We stepped into the ER, and I swear, I have never seen such service at a hospital. They were waiting for him, and we walked right up to the transplant floor. We did the paperwork from bed.
They did another chest X-ray, EKG, and then blood work to make sure again that Matt's antibodies matched the donor. (My Lord. All the tubes. Insanity...) Then they did the IV. For some reason, they had to get Matt 5 times before they got a good IV started. His kept "blowing out" and his vein would disappear. I felt awful for him.
By the time that was all done, we were sitting in the bed at 3am... Laying in the bed together, trying to get some rest.
I'd doze off, and look over at Matt. Usually his eyes were open and he would smile at me. Or tell me he loved me, and we would try and go back to sleep. We finally got a few hours in here and there. We actually were pretty comfy all snuggled up on the hospital bed.... Which is nice considering that this will probably be the last night we can sleep like that.
Anyway, I'm babbling. The surgeon, Dr. Alexander Helmut Kurt Kroemer MD (very direct. German
) told us that the organ was still in the donor, and they would be testing and evaluating today. He examined Matt, and said that the procedure would be more complicated due to his existing scars... So it would likely be an 8hour+ transplant. He wouldn't give us more information, but said it would likely be around 10pm tonight.
Fingers crossed that this works. It is a lot of hurry up and wait.
For now, we are both a little on edge, but have received all of your calls, texts, Facebook messages, emails, etc. cheering Matt on. You have no clue how much it means to us. It makes us smile... Especially now in the waiting stage.
12 hours in from the initial call... And it seems like an eternity, but oddly enough time is standing still. Does that make sense?
Go to our Community web address:
We love that commercial. If you see Leila, she will actually say it for you. Makes us laugh all the time. But I digress.
Well. Last night after we put the kids to bed, that was us. Our number finally got called. We got our second call from The Georgetown Liver Transplant Coordinator at 10:32pm. A 33 year old woman, local, around the same size as Matt, healthy, low risk... Unfortunately had a stroke while having a c-section, and passed away. She was listed as an organ donor. She qualified as a perfect match for Whitey.
(I know. It is hard to even write that down as parents... Much less to be joyful that that is our option. But, that is our reality.)
Anyway, Matt is the primary recipient of her liver, and there is a secondary recipient and possible tertiary recipient waiting for it here at Georgetown, in case last minute Matt does not qualify. We immediately called Matt's parents and Bill (my father in law) came over immediately to watch the kids overnight.
We woke the kids up, and did a White family hug. Told them that we loved them, and that daddy is going to the hospital. Eli didn't seem to understand, but Leila looked pretty concerned.
We got into the cancer car, and got over to the Georgetown ER. Matt only went through one semi red light. (I'd call that a win!!). We stepped into the ER, and I swear, I have never seen such service at a hospital. They were waiting for him, and we walked right up to the transplant floor. We did the paperwork from bed.
They did another chest X-ray, EKG, and then blood work to make sure again that Matt's antibodies matched the donor. (My Lord. All the tubes. Insanity...) Then they did the IV. For some reason, they had to get Matt 5 times before they got a good IV started. His kept "blowing out" and his vein would disappear. I felt awful for him.
By the time that was all done, we were sitting in the bed at 3am... Laying in the bed together, trying to get some rest.
I'd doze off, and look over at Matt. Usually his eyes were open and he would smile at me. Or tell me he loved me, and we would try and go back to sleep. We finally got a few hours in here and there. We actually were pretty comfy all snuggled up on the hospital bed.... Which is nice considering that this will probably be the last night we can sleep like that.
Anyway, I'm babbling. The surgeon, Dr. Alexander Helmut Kurt Kroemer MD (very direct. German
Fingers crossed that this works. It is a lot of hurry up and wait.
For now, we are both a little on edge, but have received all of your calls, texts, Facebook messages, emails, etc. cheering Matt on. You have no clue how much it means to us. It makes us smile... Especially now in the waiting stage.
12 hours in from the initial call... And it seems like an eternity, but oddly enough time is standing still. Does that make sense?
Many of you have asked how you can help. Our dear friend Lara McCauley has set up a website to help us out. If you are interested in helping in some way (having a meal delivered, driving, helping with the kids, mowing the grass while I'm not able to, helping take out the trash, providing money for parking (it's pay parking only which drives me nuts)
Go to our Community web address:
- https://www.lotsahelpinghands.
com/c/729068/
Instruct the people you've invited to use the ‘Join this Community’ link to fill out the form which is a Request to Join the Community. Once they've done this, Whitey, Tessa, and Lara will receive emails stating that there are ‘Pending Members’. Members will be automatically notified and provided instructions for signing in to the Community.
That's it for now. They have given Matt the okay to eat until lunch. So I am on the way to get him something delicious.
Lots of love,
Tessa
Tuesday, May 24, 2016
5/24/2016 - Upgraded MELD... and no news.
I realize it's been a while. One of my best friends and I caught up with an old high school buddy of mine who is moving out of the area with his family. This was maybe two weeks back. he is a pretty quiet guy and we were in the car driving headed to a DC United game. I still distinctly remember him squeezing my shoulder and saying "Hey man, I read the blog, and appreciate the updates. It doesn't even have to be long winded. Just a short note to let us all know you're ok and what's up".
I'll do my best to hold myself to that, because there is always stuff going on and I would like to keep people better informed.
My MELD was increased from a 29 to a 31 effective on May 18th. It's good that my MELD is higher because it cuts the chances that someone can leapfrog me in my wait-list status. Having said that, I'm still waiting with no new calls or offers. There was no "A" blood type transplants done in the last week. My first transplant coordinator who was out on maternity leave may or may not be back, I'll know more in Mid-July. She's really cool though and it would be nice if she did return. The person who has covered me while my primary coordinator is out, is good too but it would be good to keep all the history.
Lastly, I've had lots of requests for people asking how they can help when the transplant occurs. For the first 2-3 days, I won't be able to talk, will be on ventilator likely, and pretty much a vegetable. There won't be a lot that people can do immediately as I'll be in the hospital for 10 days before home, but in the weeks following, we will. Our good friend Lara has setup a website (http://lotsahelpinghands.com/how-it-works/ ) that you can register with if you might be interested in helping. It will keep people organised so meals don't overlap and also so my immediate family can concentrate on our family unit and don't have to worry about logistics. See below:
If you are interested in helping in some way (having a meal delivered, mowing the grass while I'm not able to, helping Tessa take out the trash, providing money for parking (it's pay parking only which drives me nuts))
Go to our Community web address:
Lastly, I've had lots of requests for people asking how they can help when the transplant occurs. For the first 2-3 days, I won't be able to talk, will be on ventilator likely, and pretty much a vegetable. There won't be a lot that people can do immediately as I'll be in the hospital for 10 days before home, but in the weeks following, we will. Our good friend Lara has setup a website (http://lotsahelpinghands.com/how-it-works/ ) that you can register with if you might be interested in helping. It will keep people organised so meals don't overlap and also so my immediate family can concentrate on our family unit and don't have to worry about logistics. See below:
If you are interested in helping in some way (having a meal delivered, mowing the grass while I'm not able to, helping Tessa take out the trash, providing money for parking (it's pay parking only which drives me nuts))
Go to our Community web address:
- https://www.lotsahelpinghands.
com/c/729068/
Instruct the people you've invited to use the ‘Join this Community’ link to fill out the form which is a Request to Join the Community. Once they've done this, Whitey, Tessa, and Lara will receive emails stating that there are ‘Pending Members’. Members will be automatically notified and provided instructions for signing in to the Community.
Saturday, March 26, 2016
3/25/2016 - The First Offer... and Rejection
For those of you who know me, you know I have a ridiculous sense of humor. I could be mistaken for a 12 year old boy if anyone were to make realistic comparisons to my juvenile humor. A good flatulence/body part/potty joke has been known to literally send me into happy tears and laughing so hard my stomach aches. Yes, I do realize that I am now in my mid 30s and a mom, yet sadly, my humor has not matured with my actual age. I don't believe it ever will, and I am okay with that.
Did we just make the biggest freaking mistake of our lives? I know I went to bed last night asking myself that question over and over again. I woke up this morning, while Whitey was playing soccer, and asked myself again when I first opened my eyes. And I haven't stopped thinking about it.
Whitey could be in surgery right now. Instead, he played soccer this morning, and is now bathing the kiddos. Like this is any other day.
Did we just look a gift horse in the mouth?
As the old saying goes, "A bird in the hand is worth 2 in the bush." Whitey is a huge fan of this idiom. Meaning, it is better to have a lesser but certain advantage, than the possibility of a greater one that may come to nothing.
Knowing that Whitey just had his last MRI and series of tests on Monday, and the results came back favorably, I regret nothing....
...I think. Damn it.
We need to have these conversations. Pronto. If we are months or another year from now, and he is in worse shape, we definitely would have a longer conversation. Since we are still relatively okay, I am okay with the decision.
Basically, more of the same. We still wait... yet now, the temperature has gone from warm to a full on simmer. We are on high alert as we can get the call again. This can be tomorrow, it could be another year from now. We can get multiple calls like the ones we just got. We can go into the hospital, and find out last minute that it won't work out. (God, I hope not. This wait is like cruel and unusual punishment on our hearts.) On the other hand, I want Whitey and our family to live our life normally. You take this away from us, and I swear, we are the happiest 4 people imaginable, in our cute little life.
That being said, one of my all time favorite games is called "What would you rather?" As the name suggests, you and a friend (or group as it often goes) ask each other a series of questions. You are given two equally bad questions, and the other person must choose. The only rule is that you aren't allowed to answer, "neither" nor "both." Simple enough, right? Usually, these things start off tame:
"Would you rather be poor but gorgeous, or a millionaire and unfortunate looking?" (Easy, a millionaire. Plastic surgery is always an option. Obviously.)
"Would you rather listen to Nickelback every second for the rest of your life or......_______?" (Even easier. You ALWAYS choose against Nickelback. That band sucks.)
As time goes on, depending on how well you know the person/people you are playing with, and the presence of adult beverages, the questions usually can get pretty hysterical/disgusting/all of the above, on all levels. That is usually when I have the most fun. (By the way, if you have some really great ones, bring it on. I will make sure to answer! I am not easily offended!)
So why am I even telling you this about me? Well, Friday night, 3/25/16 at 11:10pm, Matt (and therefore I) got the biggest What Would You Rather question of our lives.
As we have written about before, Whitey has a pretty high MELD score. This means that he is high up on the list for receiving offers for liver transplant. Because of this, we usually keep our phones on us at all times. We never know when "the call" can come. Tonight it did.
I was watching DVR'ed Scandal in the basement, and Whitey comes barreling down the steps. I swear, it sounded like a herd of elephants racing down the stairs. He looked pretty pale and put the phone on speaker. A lady named Kristin was on the phone with him, and posed the offer:
"Which would you rather:
1. A male, approximately your age is now brain dead, and on life support at Georgetown Hospital. He is your blood type. As of now, he is considered healthy. He does not at this point have known HIV or HepC, but he is considered a "high risk donor." In the last 12 months, he has been in prison for 9 months. He is known to be an IV drug user. If you would like to take this offer, you should start coming to the hospital.
OR
2. You can decline this offer, it will not negatively affect your place in line, but you will be taken off as a candidate for this case and we will move on. It could be next week, or months from now when we will call you again.
It just took us 2 seconds to look into each other's eyes and come to decision number 2. And in those 2 seconds, I realized "$h1zz has gotten REAL." We had just gotten our first offer for a liver. We had been waiting for this call since the end of April 2015... and almost a year later, here we go. And we said no. Are we crazy? Or was this the right choice?
So you probably have questions. We did, too. We always do. Even though we knew the answers, it was good to ask them again for reassurance and good measure. Therefore, I will try and answer the ones we had for you.
High Risk Donors: As a general rule, we aren't supposed to know much information about the possible donors. But, if a donor is considered "high risk," then the hospital needs to inform us of that information. Which criteria render a donor "high risk?":
- History of Hepatitis C. (Yes. Many patients who are in Matt's shoes already have HepC, so receiving a liver from a donor who tests positive is a possibility. We already decided a year ago that this would NOT be an option for us, unless we are in dire straits. Given that the treatment was successful for Whitey, and he no longer has the virus, we would no longer want to consider this as a viable option.)
- Known IV drug user
- Men who have sex with men (Which I have my own opinions on. I would GLADLY agree to take any healthy organ, from a healthy person, regardless of sexual orientation/race/religion/sex. I am sure Whitey is on the same page.)
- Been in jail
- Prostitutes
What percentage of donors are high risk?
There is no firm answer on this, but Kristen said that she can say about 25% of donors are high risk. Was Whitey called because other candidates rejected the offer? No. He was the first person they called to offer.
There is no firm answer on this, but Kristen said that she can say about 25% of donors are high risk. Was Whitey called because other candidates rejected the offer? No. He was the first person they called to offer.
Whitey's position on "the List"
We were told again that "the List" is an ever fluid entity. As we discussed before, his MELD score is a 29, and will be going to a 30 in about a month and change. Yes, a 30 is definitely high up there. But, there are many factors that change his position. This was the actual example she gave us: A person decides to go to the woods and eats a lethal amount of mushrooms in the woods. He or she is admitted into the hospital because of liver failure and needs a transplant immediately to live. Even if a liver comes up with Whitey's blood type today, tomorrow the mushroom eater will get the liver. It is all on an as need basis.
We were told again that "the List" is an ever fluid entity. As we discussed before, his MELD score is a 29, and will be going to a 30 in about a month and change. Yes, a 30 is definitely high up there. But, there are many factors that change his position. This was the actual example she gave us: A person decides to go to the woods and eats a lethal amount of mushrooms in the woods. He or she is admitted into the hospital because of liver failure and needs a transplant immediately to live. Even if a liver comes up with Whitey's blood type today, tomorrow the mushroom eater will get the liver. It is all on an as need basis.
Sidenote: I personally believe that that person is a moron, and shouldn't be eating mushrooms off the forest ground anyway. That's unsanitary. They should have packed the right amount of food and beverage, like Whitey does before any hike, and they wouldn't have been in that situation. Obviously my husband is smarter than this person.... and deserves it more. Hahaha! I kid.
But yes. As of 3/25/16 at 11:10pm, he was number one.... like he always is in my book. Okay, that was mushy.
Will rejecting this offer negatively affect his place in line, or future offers?
No, declining any offer for whatever reason does NOT have any bearing on future offers. Whitey can reject because the donor is high risk. He can decline the offer because he has been sick. He can decline the offer because we cannot get to the hospital on time.
No, declining any offer for whatever reason does NOT have any bearing on future offers. Whitey can reject because the donor is high risk. He can decline the offer because he has been sick. He can decline the offer because we cannot get to the hospital on time.
No situation or circumstance will change this.
Was this the biggest mistake we have ever made?
Did we just make the biggest freaking mistake of our lives? I know I went to bed last night asking myself that question over and over again. I woke up this morning, while Whitey was playing soccer, and asked myself again when I first opened my eyes. And I haven't stopped thinking about it.
Whitey could be in surgery right now. Instead, he played soccer this morning, and is now bathing the kiddos. Like this is any other day.
Did we just look a gift horse in the mouth?
As the old saying goes, "A bird in the hand is worth 2 in the bush." Whitey is a huge fan of this idiom. Meaning, it is better to have a lesser but certain advantage, than the possibility of a greater one that may come to nothing.
Knowing that Whitey just had his last MRI and series of tests on Monday, and the results came back favorably, I regret nothing....
...I think. Damn it.
We need to have these conversations. Pronto. If we are months or another year from now, and he is in worse shape, we definitely would have a longer conversation. Since we are still relatively okay, I am okay with the decision.
What now?
Ha! Man, if I had the answer for this, 99% of my stress and anxiety would be gone! Please tell me if you have this answer. Seriously....
Basically, more of the same. We still wait... yet now, the temperature has gone from warm to a full on simmer. We are on high alert as we can get the call again. This can be tomorrow, it could be another year from now. We can get multiple calls like the ones we just got. We can go into the hospital, and find out last minute that it won't work out. (God, I hope not. This wait is like cruel and unusual punishment on our hearts.) On the other hand, I want Whitey and our family to live our life normally. You take this away from us, and I swear, we are the happiest 4 people imaginable, in our cute little life.
Stupid effing cancer.
We will be definitely staying very close to home and the hospital. Kristen told us that many patients ask for a letter saying that they are speeding/on 66 HOV at the wrong time because they are on the way to the hospital for a transplant. Let me tell you... I DARE a police officer to give me a ticket for speeding there. Try me. I'd probably ask them for a police escort on the double instead. Hahaha, I can be very convincing. (Did I ever tell you I was in sales?!)
We do ask for continued support, prayers, etc. It brightens our lives for sure. If you see us, we are going to be pretty militant about making sure everyone is as healthy as possible. We do NOT want to have to decline a great offer because Whitey is sick. That would would break my heart.
I am most scared for Whitey, and pray every minute that this operation will be a success. Before, during, and after. It haunts me... and I need to tell myself constantly to be thankful for this borrowed time before the surgery... as life will undoubtedly change after surgery. (I am sure for the better!)
Most of all, I am sure we will be holding the twins and onto each other a little tighter. Part of me is really glad that they are still so young. This way, they will not remember this time. My heart literally aches knowing that the kids will not be able to see their daddy for the time he is in the hospital recovering.... they literally adore Whitey. I wonder how my 2.5 year olds will understand that they need to be extremely gentle around the daddy who they climb on to give hugs and kisses to, every change they get. More so, I am sad that Whitey won't be seeing THEM. At the end of the day, I think we need them more than they need us.
It will be a tough time. And we just got a huge dose of reality tonight. But, this is all for the best. And I have faith... I will always have faith in my husband. I am told every day by different people that he is their hero, and that they are inspired by his strength and love of life. They are right. He is brave, he is a bad ass, and he deserves the BEST life. Period.
Most of all, I am sure we will be holding the twins and onto each other a little tighter. Part of me is really glad that they are still so young. This way, they will not remember this time. My heart literally aches knowing that the kids will not be able to see their daddy for the time he is in the hospital recovering.... they literally adore Whitey. I wonder how my 2.5 year olds will understand that they need to be extremely gentle around the daddy who they climb on to give hugs and kisses to, every change they get. More so, I am sad that Whitey won't be seeing THEM. At the end of the day, I think we need them more than they need us.
It will be a tough time. And we just got a huge dose of reality tonight. But, this is all for the best. And I have faith... I will always have faith in my husband. I am told every day by different people that he is their hero, and that they are inspired by his strength and love of life. They are right. He is brave, he is a bad ass, and he deserves the BEST life. Period.
We will have that. Very soon. Until then, we have infinite love for each other.... and if waiting ever gets boring, I can always rely on my trusty games of What Would You Rather.
xoxo,
Tessa
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| Had to leave the cutest pic of our little homies |
Wednesday, March 23, 2016
3/22/2016 - Phone Call Results
I took the day off for my tests yesterday and another day today to really be off for a day. Tessa and I had taken the kids to lunch and were headed to look for a new sofa. In the middle of browisng, I got a 202 call (DC area code).
Now, anytime I get an unknown 202 area code, I always pick up. It could be the call for either transplant or it could be my doctor. I scurried away while holding Eli who was resting on my shoulder and found a quiet corner. It was the office of my Transplant Hepatologist calling with good news. CT of the chest was clear (no spread), and no meaningful changes in the two tumors in my liver. I felt a huge sigh of relief and then walked back to convey the news to Tessa.
Every call, you always fear the worst but I've been really lucky with treatment and monitoring so-far. I just wanted to share the good news.
When I get a hard-copy of the results, I parse through them like I do with the Fed's Meeting Minutes on interest rate policy. Until then....or the next update.....
~Me
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