Thursday, January 31, 2013

A few days out...

and I am feeling numb...I guess that's the best word for it. Numb and exhausted. Yup, those two words fit me perfectly at this juncture.

Before I get too deep into dad, let me update you on mom's chemo today. As soon as I walked into the office, mom stood up and was bawling. As she gave me a big hug, she again apologized for not being able to make it to TN for the services. Really?! I told her not to cry and that I wouldn't have wanted her in a stinky old airport anyways with how compromised her immune system is right now. My mom and dad were always friends. They just didn't work out. My dad was my mom's biggest cancer cheerleader if you can understand that. They truly cared for one another. Simply beautiful.

Mom gained a pound, yet her energy level is at a 3-4 on the 1-10 scale. She is just so drained. Overall though, I thought she was in great spirits. I left at about noon to do some 31 stuff and to get my hair cut. She was just starting to get the chemo at that point. Happy dance since next week is her off week! Only one more round to go for this episode.

As for dad, I have taken two days off work for myself. Yep, I didn't do one ounce of housework today and I used some giftcards for dinner. Total laziness and I am completely okay with that. I probably will do the dishes tomorrow ;)

I took the time off to think about things, but honestly I am scared. Who wants to make themselves cry? Most times, I am afraid of my own thoughts and this time it truly scares me. I just want to turn my brain off. Do I have permission to do that?!

The outpouring of support is crazy. So many loved my dad.......his friends are reaching out to me, sending me gifts and notes. It's awesome. I mean, I know my dad had great friends, but now I really KNOW. He is sorely missed by his buddies and his little girl. It just hasn't quite sunk in yet.

Thursday, January 24, 2013

Dad's Eulogy

Tomorrow, we are holding services for my dad. Over the last few days I have felt an intense need to tell everyone what I thought of my dad....how he made me feel. Tonight I was granted that by Brother Greg and I will be delivering my dad's eulogy. Here it goes:

We are here today to celebrate the life of my dad, Terry Raymond. I can't thank everyone enough for making the trip and for my amazing family. 14 of us in one house and more laughter than we can handle. It's the only thing that is getting us through the day.

We lost dad entirely too soon. Look at all the love in this room for my wonderful, thoughtful, caring, kind and funny dad. It's overwhelming.

I wanted to take a moment to share some memories and thoughts on dad.

Dad instilled a great sense of friendship in me. Through his years of wonderful friendships with Tom, Cindy, Joe, Dan and so many others, I really got a sense of how your friends truly are a natural extension of your family.

My best friend Susie Brill gave me these beautiful words of comfort: I believe heaven is a beautiful place and I know that you father is on his way there. You will live without seeing him, but he will see all the wonderful things that you will do and the even stronger, more wonderful person you will be when he looks at you from heaven. 

My best friend Anne Hazel held my hand during my first ultrasound this week. And Emily and Jen made the trip from OH to hold me up today. You see, my dad taught me how to pick the best flowers in the garden and nurture them with love. They will then give you years and years of endless beauty. 

I am lucky that my dad will live on through my children.

Sadie inherited dad's blunt way. That girl will tell you how it is, just like dad always did. She also inherited his mischevious streak. When I was about Adrian's age, I had really bad eyesight. One 4th of Jule dad took me to Geneva Park to watch the fireworks. I remember looking up and seeing something flying through the sky with blinking lights. He had me convinced that it was the Goodyear Blimp coming to scoop us up and see the fireworks from the air. In actuality, it was just a passing plane and he was just playing a trick on his blind daughter!

My son Colin inherited dad's tinkering gene. He loves to inspect things and pull them apart.....but unlike dad, he hasn't figured out how to put them back together yet. I know he'll get there though.

I am hoping our third child, who is due in September, will inherit dad's curls. Maybe not his afro curls, but his curls nonetheless :)

Dad - I love you. You always made me feel so special and loved. On my last birthday you sent me a card with flowers on the front. Inside you wrote, "you are the flower of my life." How special is that??

There was never a second that I didn't know my dad was proud of me and that he would do anything for me. I feel like my husband is that kind of father to our children. I am incredibly blessed.

In closing, I wanted to quote my dad's friend Dan Nugent. Dan told me on Monday that, "your dad was the best friend I ever had." In all of our own ways, dad was all of our best friends. He'd do anything for you. I pray that he is working on a hot rod or lawnmower in heaven and breathing in the sweet smell of eternal life.

~~~I love you~~~

Tuesday, January 22, 2013

My dad...

Passed away on January 21, 2013 after a long illness. Since July of last year, he has been in and out of the hospital for internal bleeding issues and breathing issues. Quite frankly, his quality of life has been shit.This whole time I just kept thinking that he was going to be fine....that this was a chronic illness. Until I got the call from my cousin yesterday saying that he had passed.

Wow. Gutwrencher. Out of left field. I lost it. Had to scream for Brian to talk to Amanda while I laid on the steps. Vomited. Eyes are so puffy, I can barely see to type this. I just feel....numb I suppose. I thought mom was going to be first. Am I going to lose both parents in 2013? Am I strong enough to handle this?

My dad was awesome. He and I had a very special relationship that involved a lot of swearing and humor. He and I were always joking around. I think I get most of my sarcasm from him. He was crass and often didn't have a filter. But that was okay, that was just how he was. Just the other day he asked when Brian and and I were going to get "fixed." Okay dad, happy to know that you are excited about your third grandchild :) No filter, but he was always realistic and said what he thought.

My dad had a hard life. Lots of bad choices, some bad luck, but he really kept true to himself and didn't wallow in pity....most of the time. I wanted better for him, but sometimes the "damage" is done and you have to live with the results.

I had to do the hard thing of calling his two best friends last night. Dan said to me, your dad was the best friend I ever had. And I know that to be true. My dad loved his friends. He truly did. I think I get my friendships from him. He was always with his friends.....Tom, Joe, Dan, Keith and so many others. He truly got what being a friend meant and instilled that in me. I can thank him today for my beautiful friendships. I never knew until he was gone what a gift he gave me.

Colin and I are headed to TN this afternoon to make arrangements. Brian and Sadie are coming tomorrow. It's weird to me that I was telling Aunt Coni that I would see her tomorrow. I am going to see my Nonnie. Poof! Just like that, the family that I love so much is all going to be surrounding me today.

I love you dad...so, so much. I KNOW you are in a better place. I know you wanted to be with the lord. I know that. I know you are out of pain. I know your fight is over. It doesn't mean that I have to believe it yet. It's somewhat relievng that you are out of pain and misery. Is it bad for me to feel a slight sense of relief? But that slight sense of relief is outweighed by the fact that you are gone and I'll never hear you bark at me again. It's going to be okay....I know it. I just don't want to know it.

I love you dad. May god rest your soul. Dance in the heavens with grandma Perkins. Run, jump, build cars.....this is your time...revel in it. And always watch over me, because I'll always need you.

Thursday, January 17, 2013

Notes

Today was the first day of mom's second round of chemo. Only 5 more times to go! YAY.

 My sister went with mom and had an overall good report to bring back. There is one major thing that concerns me.....we'll get to that later.

Mom's port is proving to be awesome. No muss, no fuss. Mom was hooked up by 10:15 receiving her pepcid, benadryl and anti-nausea medicine. She had put the soothing lotion on the port site and didn't even feel a pinch when they put the needle in. So, instead of them having to search for a vein, they just popped it right into her and she was off and running.

Mom's hair is getting very thin, but she isn't wearing the wig yet...I would assume by next week or the week after, she'll have the wig on all the time.

Mom has been coughing so much that she vomited 5 times on Monday. Her appetite is WAY down because of the constant coughing. Which is why she lost 5.5 pounds this week. 5.5. That kinda freaks me out. Not kinda, it does freak me out. I guess she told the nurse that she typically only wants to each about 50% of her plate. She was doing so well last week with her weight. And now down almost 6 pounds in one week?!? She is now at 133.

I have to do some homework and find out how "bad" this is. This whole coughing thing has to stop, but I am afraid that we aren't going to know anything until after the three rounds of chemo and another PET scan. I think all of us are worrying that there is a tumor somewhere that is agitating her lungs.  I spoke to mom a little bit ago and she seemed very happy about how fast and easy the port is, so that is great.

So, the roller coaster continues. I just got a call today that my dad is in the hospital again! I swear to god, this is fucking never-ending.

I just spoke to him and he seems to be doing fine....his lungs are filling with fluid again. They'll give him some Lasix and hopefully discharge him tomorrow or this weekend. At least he didn't need blood this time! I am looking forward to going to TN in two weeks with Colin to visit dad and my whole family.

So, I am doing fine. Good things are happening in my life, even with all of this drama with my parents. We received a wonderful surprise this week that caught us all off-guard, more on that later. So, who knows what the hell 2013 will bring. I do know that it will bring some good though. And some tears. And some screaming. But I am determined that it will bring good!

Tuesday, January 15, 2013

We lost a great one.

Yesterday, on the first day of the spring semester, the College of Education lost a wonderful man to stage four brain cancer. Dr. Rogers was diagnosed in August of last year - stage four from the onset.

Jim was a wonderful man. Funny, smart as hell, and kind. He was a professor who delved into the world of suicidology and was an expert. He was one who helped other professional counselors to be their best. He was simply fascinating.

His death has made me so sad, along with so many of my co-workers. How could an academic lose to his brain?

It got me thinking about "prevention." What could Jim have done to prevent brain cancer? He was physically fit, active, non-smoker, what could he have done? Obviosuly I know that breast cancer and brain cancer are different, but one thing is the same. For all of the marketing on prevention, roughly 6% to 10% of people are Stage IV from their initial diagnosis.

My heart breaks for those in that percentage group. They had no chance. My mom did have a chance, being diagnosed at stage 2A initially, but now at stage four we are in the fight of our life. Jim was gone in six short months leaving behind a wife and two sons. It's just not fair, is it?

I pray for comfort for his sons and the co-workers that loved him so much. They are so devastated. Jim, you were one amazing professor, and I thank you for always taking time out of your day to pop in my office and just chat. You were truly someone to look up to and to aspire to be like.

Friday, January 11, 2013

Gratitude

Gratitude. I have to get this word down before it escapes me again. Literally every week since November, I have heard this word over and over. On websites, in speeches, on TV....I feel like that word has been following me. Like, in creepy stalker mode. I keep wondering if someone is trying to tell me something.

Maybe I need to be more grateful? But grateful of what? I suppose that mom is still here and that we had a good scan. I am always grateful for my little family that I have created. I think I am a pretty damn grateful person for the shitty cards that we have been dealt

grat·i·tude  

/ˈgratəˌt(y)o͞od/
Noun
The quality of being thankful; readiness to show appreciation for and to return kindness.

I am thankful. I do show appreciation when things go right. Maybe the universe is telling me to always show gratitude? Hmmmm....I may need to work on that :)

Thursday, January 10, 2013

WOOOOHOOOOO!!!! (Pictures included)

AWESOME oncology appointment today. AWESOME!!

Here is the quick rundown:
  • Mom GAINED a pound - current weight is 138.08. This is the first gain in over a month!
  • BP was good, pulse was 93. A little on the high side, but lower than it has been 
  • Energy level is still way down. She looked very tired today
  • Cough is still going on. Doc wanted to order an xray, but in true mom fashion, she wants to give it one more week (since she's off chemo this week). Doc was fine with that.
  • BUT THE MAIN THING:





Her tumors are shrinking!! Flattening!! Some of the nodules are GONE!! Don't you just want to scream from the top of the trees with me?!

Whew, okay, I need to get myself under control. The rest of the appointment went well. We did hit one rough spot when the doc told mom that we would be in some form of chemo for the rest of her life. See, my mom thinks that if you take one dose of something, and it works, then you are done! Voila! Cured. It's kinda frustrating. At that point, Dr. Greenfield told us, "Aha....I see we have a medicine-phobe here." And that is exactly what mom is. Why can't she understand that stage four means no remission, no break from medicine? If she would only start to educate herself. But, as my loving husband said, she has me for that.

So after the ***great!*** appointment, she and I headed over to The Gathering Place to find her a new wig. Erin, my group leader was nothing short of amazing with mom. She had the perfect pitch with mom and made her feel comfortable. We ended up picking out a nice wig for mom. A little short, but nice.

As I had my back turned to mom trying to put those damn wigs back on the mannequin heads, I turned around and say my mom in this god-awful blondish-brownish curly wig. OMG, I burst out laughing! She said that she was trying to have curly hair just like me. That woman looked a hot mess. It was so nice for that moment of levity.

So, feeling good after a tough, tough week. This is the thing, cancer can bring you to the lowest of lows and the highest of highs. Right now I am riding high and hope that the wave doesn't crash too soon.

Wednesday, January 9, 2013

Bless and release...

This was quite a day. I feel somewhat "naked" now writing for a potential audience. Before it was just Annie and Sarah, and I can handle those bitches :)

As soon as I hit the send button today, I got sick. I've cried several times since emailing everyone. I feel like I am being a potential burden to you all, even though I know I'm not. Who knew that telling your closest friends, the ones you would live and die by, what you were going through is the hardest thing I've done to date?

Exposed, raw, humbled, loved. Those are words that are circling through my head right now. Along with bless and release. I have to know that my words are not meant to scare anyone, but bring them to a higher understanding of what I am going through. And release that to them. Bless and release.....bless and release. THAT is what my new tattoo may be :)

To update real quick on mom: she called me around dinnertime sounding awesome. She and I are going to the oncologist tomorrow and afterwards are heading to The Gathering Place to pick her out some weaves. She seemed light about it when I asked her. Not as grumpy as I expected her to be. I'll post more when I know more.

Oh! And my friends really know how to follow directions :) Not to email me ACTUALLY means to email, text AND call me :) You are all so wonderful, I wouldn't have it any other way. Who was I to think that Jessica Petersen's friends would listen to her?! If I didn't answer, I will. It was just a way more emotional day than I thought. Love you all.....

imPORTant day

That's what today is....imPORTant. Mom got her port installed this morning after a lot of anxiety. The port will enable her to receive the chemo easier that trying to find a vein that has been destroyed by chemo.

So I get to the hospital at 8 this morning (mom had to be there at 7:30). My sister and dad were there with mom and my nice sister bought me an iced coffee. Good start.

Mom was supposed to go back at 9:30 to have the procedure, but they didn't take her back until 10:20. It was very frustrating because mom and dad were mentally prepared for 9:30 and as the minutes kept ticking past they kept getting more and more anxious and upset. Kasey and I did our best to try to calm them down. When I was sitting with mom at one point, she said that her feet were cold. So I rubbed my hands together, created super heat, and placed them on her feet. I could feel the cold. Her poor little toes. She said that my hands helped and it felt calming to be connected to her through her feet. Weird, but true :)

When they came to get her I was in the room with her and got to give her a kiss and tell her I loved her. She was done by the time I got to work. Sister said that everything went very smoothly and mom should go home soon. This is a BIG bridge that we just crossed.

I also wanted to note that mom started to lose her hair last night. As I was sitting by her bed today, I stroked her hair and said "oh mama, you haven't started to lose your hair yet." As I was saying that, my brain was screaming, "THIN, THIN, THIN." You could feel the thinning. And then she told me it started to come out last night and to prove it, pulled out about 10-15 strands. And what did I do? I said "EEWWWW." Nice. What can I say? It was a knee-jerk reaction! 

I also wanted to give an update on the caregiver group from last night. It was awesome. Once again, I was surrounded by people who are in my shoes....and some who are worse off. The only thing that kinda creeped me out was the first lady who spoke. Her husband passed away a week ago. I wasn't expecting that. She talked of his final days and then his funeral. When she was done, our group leader explained that when a caregiver has someone who passes, they are invited to a final "goodbye" with our group and then they move to the grief support group.

Her story jarred me. Why should it have though? Most of us have loved ones who are terminal. I guess we can't all live in the caregiver bubble our whole lives, can we? It was a sobering moment, but the group wrapped our hearts around her and lifted her up as best we could.

That's about it for today. Time to get mentally prepared for tomorrow's oncology appt. at 9:30. I am going to see mom's chest again. I pray that her lesions have healed a little. Please pray with me.



Tuesday, January 8, 2013

Ports, support groups and chocolate...oh and Diet Coke

So here is how my week is going:

Monday - drink four cans of Diet Coke (DC)
Tuesday - drink three cans of DC, one chocolate bar and go to a caregivers support group
Wednesday - mom's port appt. I can only imagine that that will entail another 4-5 cans of DC
Thursday - mom's oncology appt. See above
Friday - see Tuesday minus support group

So, at least I don't smoke, use drugs or drink alcohol excessively, right?! I can feel that I am anxious to get this week over with. I just want mom to get the stinkin' port and not have to worry about it. I feel like it is going to be so much easier on her when we have her chemo next week. Keep praying!

I do have to say that I am really looking forward to my support group tonight. It is wonderful being able to be in a room with people who are in my situation. I am INCREDIBLY blessed with the support that I have been getting, but fortunately, not a lot of my friends are in my boat. It's a whole different level when you can really connect with someone because that is what you are going through. I am hoping that tonight is another success.

So, right now we are going to keep on keeping on. Until later....

Saturday, January 5, 2013

Sister Break Through!

Today has been an exceptional day. I spent most of my day at home with the kids, cleaning, organizing and catching up on phone calls. I called my dad who was in an AWESOME mood. It just made me so happy to hear HIM so happy.

I had called my littlest sister this morning when I couldn't get ahold of mom. Kasey usually has the lifeline on mom. Well, Kase didn't answer. So a couple hours went by and mom called me. We are getting together tomorrow to celebrate my dad's birthday.

Mom said that she was feeling fine...although her cough was crazy. She and I were only on the phone for about 4 minutes.

So Kasey calls me a little while after that. I asked her how mom is doing and she told me that she and mom got into a little tiff about money. $3,000, dad's 401K, that's about all I'll say about that. Anywho, Kasey then said to me, "I want to say something, but I don't want you to be mad at me." Very calmly I said ok.

Then my little sister started to tell me that she has been reading up and she just doesn't think that she is the kind of person who can handle sitting in a room with mom receiving chemo. She said that it really freaks her out, even makes her sick, to sit there thinking about the poison that is running through mom;s veins. Kase said that she would rather support mom with being with her on the weekends, bringing over meals, etc. I just wanted to cry. THIS is why it has been so hard to get her to go to chemo! I just thought a part of her didn't care. How silly was that assumption?!

I told her that it was absolutely fine that she didn't want to go. She promised that if we were in a pinch she would be there, and I believe that.It felt like a weight had been lifted for me, and her as well. She feels most comfortable spending time with with mom, just not in the chemo chair. I am way cool with that. Kasey gets to spend time with mom that Katie and I can't neccessarily do because of kids, work and school. So we chatted some more and left each other happy.

This kind of conversation with my sisters is what HAS to happen. We need to come together, and while some may think this was small, this was HUGE!

Good day! Now off to watch Tangled with my princess.

Friday, January 4, 2013

Basic Notes

Well, I was going to really write a blog post the other day about how I feel that I am the only one who cares about mom's appointments and knowing EVERYTHING that is going on with her.......but I have been so busy, it's not even worth it. I know that my sisters care about mom, I have to breathe in and let it go.

Sorry to disappoint with no rant :)

Anywho, here are a couple notes from mom's chemo yesterday (my sister Katie went):

  • Mom's veins are so shot that she needs a port to put in (should be next Wednesday).
  • This made momma very unhappy.
  • The only vein that the could get was above her elbow in her right arm....ouch.
  • Her weight went down by 1 lb = 138 lbs.
  • She is to take Senacot (?) prior to chemo to stop the blockage.
  • Mom's fatigue was a 4 on a scale of 10...yikes
Katie stayed until just before the chemo started and said that mom was kind of in a bear of a mood...I don't blame her.

I just sincerely wish that this were easier. That I either was an only child, or had COMPLETE CONTROL. It's hard when you feel like you are the only one doing anything, yet I know that I am not. Katie and Kasey both help mom and dad in tremendous ways that I don't.I understand that in my rational mind, but when I get amped up, of course I become irrational.

Breast  cancer is not only a disease of the body, it can also be a disease of the family. Our family has fought hard against this fucker, but some days it feels like we are ALL going to succumb to it. Blah.

I am so looking forward to next Tuesday when I get to go back to the caregiver's support group at The Gathering Place. It'll be nice to see how the others are faring....hopefully everyone is still with us.

So, in closing today, BC fucking sucks. And that's about that.

Tuesday, January 1, 2013

2013

Happy New Year to everyone! My family and I just got back home from a wonderful ski vacation in Holiday Valley and I am exhausted, yet full of love for the family that I married into. I just wanted to jot down a couple thoughts before they left me.

I called mom on Sunday after taking a major tumble down the mountain. She answered the phone sounding happy and strong. She almost sounded lighthearted! She was joking with me that she had been following the pictures from my trip and had to tell herself not to post anything "mom-like" on my wall, like "Be careful," or "You should have a helmet on." It was really nice to hear her upbeat. Also on the plus side, she pooped! She's been constipated from the chemo and she said that she felt like a million bucks. That really made me happy. I'm not sure what my mindset would have been if she would have been feeling lousy. If only all our phone calls were that positive.

So last night, NYE, I was spending time with my family watching an amazing fireworks show at midnight. It is truly something to see.....fireworks on a snow covered mountain. It was awe-ful....I know that's not a word, but that's all I can think of right now :)

So as we were drinking and kissing and hugging each other, my main thought was that I am scared of 2013. I know I should stay grounded in the "now" but it is scary to think about this year. Mom has 10 more rounds of chemo and it's only going to get worse and worse. I am scared for 2013 and kinda don't even want to think about it. I am going to try to remain positive, it's just hard sometimes.

I guess we take what little good we get and we run with it, right? That's about all I have to say. Let's hope that we make it to 2014 with my whole family still here on earth.