An update from Nick

Hi Everyone-

We apologize for the lack of updates lately—things have been, in some ways, uneventful and we count that as a blessing. I (Nick) am going to handle this update. Try not to fall asleep!

Not much has really changed with my treatment. I continue to get chemo every 15 days and will do so through February. I have my 8^th treatment scheduled for 12/27, which will mean I am two-thirds done with the chemo. I am grateful for that. I will have a few more pulmonary function tests to monitor my lung health, but outside of that, I won’t expect to have any testing done until after the last treatment. 

By and large, I think I have handled the chemo pretty well—most days I feel pretty good. Chemo is a weird thing, though. It has a way of taking little bits and scraps out of you. It has not been some romantic notion of suffering. For me, it’s like a bee sting, then another, then another. With each treatment, the physical side effects aren’t changing in any significant way, but I find myself a little less eager to face them. Really, it’s just as simple as saying chemo sucks. It’s a big pain in the ass and one I look forward to getting behind me very soon.

On that note, I finally had to cave in and shave my head. It wasn’t such a difficult experience other than to say that my head has many disgusting moles on it and I am thankful that my hair normally covers them up. Also, I have really big ears—I should be careful not to expose myself to too many headwinds or I am liable to take flight. Everyone has been very nice and has complimented my new look. People are too kind. 

(Nora loves it)

I am happy to say that I have been able to get myself back to work on a part time basis. I am proud of getting through The Sopranos—such an achievement, but I was ready to start doing something productive. The transition back has gone really well so far, but I am still trying to get my brain firing again. It is amazing how quickly the brain can forget stuff, but then again pick it back up. If treatment continues to go well, I would like to ramp up my workload as time goes by and get back to full time once my treatments are done. I am lucky to be in a situation where I am able to get work done without always having to be on site, so I can try to avoid picking up the winter germs. It seems to be working out well now, so I will keep my fingers crossed.

This time of year is busy for everyone and definitely has been for us. We were lucky to be able to visit family on Thanksgiving. It was fun to be able to unwind and enjoy a good meal. It can be difficult to make schedules match, sometimes, but we are happy it worked out. 

 

We also just celebrated Nora May’s 1^st birthday. She’s been just the perfect thing in our lives and we had a great time celebrating with friends and family. Now, we have to look forward to Christmas, which we think will be a bit more relaxed than year’s past. We’re just now trying to figure out our new customs as a family. 

I think that is all for now, other than to say thank you, again, to all of you. The outpouring of support has been overwhelming. You guys are all awesome and I will never be able to properly thank you.

Remission!!!

Yesterday Nick had a day of tests. PFTs to check his lung function, an echocardiogram to check on his heart and then a PET scan which would show the effectiveness of the chemotherapy. 

Today we went in to meet with his oncologist at Methodist. When he came in the room he had a big smile and said "I have very good news for you." 

He showed us the PET scans from back in September and they were covered in cancer. It was EVERYWHERE. (We never saw them back then, I didn't even want to. We knew it was bad, didn't need to see it.) 

Then he showed us the scans from yesterday and he said "There are no signs of cancer. At all." And obviously he was right! We didn't see one spot lit up (signifying abnormalities) not ONE! It was UNREAL! 

He used the words "FULL REMISSION". 

This does not mean cure. Let me stress that. Cured is a big word.  

His lung function was NORMAL which is huge because now he will be getting the 4th type of chemo, which he should have had from the beginning, called bleomycin. This is the one that can cause lung toxicity and will cause his white counts to drop even more dramatically. With the addition of this new drug we aren't sure what side effects will come with it. It's scary to add something new and toxic, but they say that this is the best treatment plan. Nick will continue to have the chemo every 2 weeks for 4 more months. (8 more treatments, for a total of 12) 

One thing I need to note for people that will come in contact with him, if you have been sick, are sick, could be sick, you need to stay away! Nick can not be exposed to any "funk" for obvious reasons with his immune system being so weak. 

Didn't mean for that to take a grim turn... we all could not be more excited, still kind of in shock! Still fighting, but so happy! 

 

No transfusion!

Nicks numbers had increased just slightly last week and was able to avoid the blood transfusion which we were VERY excited about! 

Science is crazy...but there is something unsettling about having someone else's blood in your body, so we're gonna be happy each time he can avoid it! 

Another decent week for Nick has gone by. We even got to go out for a family dinner date on Friday which was pretty special. It was Nora's first time! Ginza Grill in Champlin. YUM. Nora loved the fried rice and chicken. She did so good too, didn't cry, whine, or holler at all. She definitely made some friends- our smiley girl. 

 

This last week, Nick has had quite a bit of hair loss, but isn't to the point of needing to shave it yet. Nora was grabbing at his face the other night and got his hair and a big clump was in her hand when she pulled it away. When the time comes, he is gonna go to his barber in MG and get rid of it all. 

Chemo #4 tomorrow. Wish him luck!!! 

Oct 23

This last week has been pretty good for all of us. 

Nick had chemo on Monday and met with his oncologist. His counts were very low, so he will go in tomorrow to have labs done. If his numbers are still low, he'll need to have a transfusion done. He has been feeling a little tired and has had headaches but still no real nausea which is great! Another week went by and he still has most of his hair on his head. It is starting to fall out though, and is looking sort of thin right now. 

Nora and I enjoyed spending time lounging with daddy all weekend. All she wants to do is hold hands and walk now which is crazy! She and Nick had so much fun "sharing" toys (passing back and forth... huge smiles!) and putting a bowl on her head to play peek a boo. Seeing them together laughing, makes the day so much brighter. 

The pic is the room Nick has chemo in at Methodist. He has had great nurses which makes the experience go more smoothly. 

Will try to let you all know how his appointment goes tomorrow. Hope for good numbers! 

 

October 16 Update

Just want to let you all know how Nick is doing.  

The main update I can give is that on September 29 he had a procedure done to drain the fluid out of his stomach.  2 days prior to that we had met with a Physicians Assistant who FINALLY heard our plea that something needed to be done about it.  When he went in to the doctor he literally looked like he was 6 months pregnant and could barley walk, when he came out he had lost his entire belly and could sit up on the couch.  They said that they took a liter and a half out, and once it was done he immediately had an appetite again.  He sent me out that afternoon to get him McDonalds and he ate it all (a happy meal and egg mcmuffin ... but still!)  It had been a month since he could eat more than a few bites of anything before feeling stuffed.  What a relief to at least have something back to normal.  

Nick and I went to his second chemotherapy appointment on October 4th and it was very scary for me.  It was a much better experience than when he received the drugs in the hospital, the nurse he had was so calming, knowledgeable and sweet.  That being said, watching toxic stuff being injected into my husbands chest (he has a port there, so that they don't have to do an IV every time) is very difficult for me.  His lung function had not improved, so he was still only able to receive 3 of the 4 chemos that are recommended for his treatment.  They will reevaluate every two weeks and decide whether or not he is able to get the fourth one.  

Nick has definitely been having some pretty good days in the last few weeks.  He has more energy, is talkative, and is able to spend time interacting with Nora.  We are grateful for every single good day that he has, and we just power through together on the bad days.  We are looking for patterns in symptoms and side effects so that we can try to plan ahead and be prepared.  This is all so new to us still and we are trying to figure out these "cancer normals" ... which are not normal.  

We want to send a big thank you out to everyone who has participated in the meal train for us thus far and those of you that are signed up for the future.  It is so helpful for me after a 10 hour work day with Nora in tow.  When we get home, being able to sit down as a family and spend time together rather than worry about what we are going to eat is such a blessing.  If anyone reading this is interested in signing up, email my mom at: maplegrovejan@gmail.com and she can invite you to the calendar.  Thank you in advance.  

We also have the fund raising website still up and running at: 
https://www.gofundme.com/nickcarney?ssid=759943173&pos=2 and we are so thankful for all of your donations, they are so helpful while Nick is out of work.  

Thanks for taking the time to check in on us. 

Chemotherapy #3 is tomorrow (Monday Oct. 17).  Wish him luck! 

Weekend cuddling

 

Its been almost a month since Nick has been able to sit up long enough and have enough energy to hold Nora on his lap. These few minutes of them laughing was amazing to see and hear. Here is to many good days of daddy daughter cuddles ahead. 

 

Watching the Ryder Cup together. USA USA USA!!! She is gonna love golf like her daddy, mommy and grandpa. 🏆🇺🇸⛳️❤️💙

Daddy's Home!

After a week long stay at Methodist Hospital in St. Louis Park, Nick came home on Friday afternoon.  He went into the ER last Monday when he could no longer stand his symptoms.   

As Joe mentioned below, once his diagnosis was confirmed with a few more tests and word from the Mayo Clinic, his regimen of chemotherapy was started immediately on Wednesday.  Due to poor lung and liver function he was unable to receive a full dose of the chemo, but that will be readdressed at the end of this week.  They kept him in the hospital, just to monitor him closely after the chemo and to get some of his symptoms under control.  

We have many big adjustments to make in our day to day lives but this is simply a TEMPORARY new normal.  One thing that is going to be tricky for me is dinner preparation when Nora and I get home from work.  My mom is working on putting a meal train website together, so if cooking is your thing, check back for info on that.  

Nora is so in love with her daddy and its amazing to watch her smile and newly discovered wave just light him up.  Being in a hospital is good for your health, but bad for your heart.  Home is where we want him to be.  

wanna send more love?

I have created an email address to go with this blog, in case you don't want to post your comments publicly below a post.  We may not reply to all messages or comments, definitely not in a timely fashion, but we are so grateful for them!  Knowing we have so much support and love out there will help us in this journey ahead.  

crushcancercarney@gmail.com 

(both Nick and I will have access to the messages)

Angela

there are no words

Nick and I can not express how extremely grateful we are for the outpouring of support we have received over the last week.  The generosity we have witnessed on our Go Fund Me page is unreal.  Family and friends that are in our daily lives, friends we haven't seen since high school, relatives from far away,  friends of friends and complete strangers have shown us that we are more loved than we could have ever imagined.  

With all these changes in our lives as well as the fact that I have Nora to take care of, I can not find enough time to send individual thank yous for donations, gifts, or volunteer efforts.  That being said, Nick and I want you to know that it has not gone unnoticed or taken for granted.  We appreciate each and every one of you that has sent out love and support for our family.  We thank you all from the bottom of our hearts.  

Angela

the beginning

In early September 2016, after experiencing a wide range of symptoms including weight-loss, lack of appetite, racing heart, trouble breathing, night sweats and fluid build-up in his lungs, Nick & his wife Angela knew something was wrong and visited a doctor. After a week of testing, Nick was diagnosed with Stage IV Hodgkin's Lymphoma, immediately embarking on a six-to-eight month intensive chemotherapy treatment on September 21.  This regimen will keep him out of work for months so we have set up a Go Fund Me account to help them financially get through this very difficult time.  

https://www.gofundme.com/nickcarney?ssid=748787169&pos=2

Nick is many things to many people, whatever and wherever you need him to be in any given moment, but I'm confident that his proudest role in life is to be Dad to Nora, his nine-month old daughter. Nick & Angela's lives have been upended, but they're resolute in his fight to overcome cancer. We will be updating this blog so that friends, family, and co-workers near & far can follow and support Nick in his journey.