Thursday, May 28, 2015

Appointments and a Question

It has begun... We have been to Dallas twice this week with another trip planned for today. Today is the radiation mask fitting. I'm going to be honest, It doesn't get much more fun... Forget Disney, we are going to Baylor. 

A friend gave me this sign. I love this sign. 
 The only thing I would change is sparkle in my eye to lipstick on. My Memaw would always say, "You'll feel better once you put your lipstick on." True Story. It really does make you feel better. It makes your face look complete, your hair look better and instantly takes off 10 pounds from your hips. But one rule to lipstick- you have to wear a lip liner. Lipstick is worthless without a lip liner. Words to live by. By Mary Bost. You are Welcome.

Team Jonathan waiting in the waiting room.
 Lucy getting ready for school. I'm so thankful she loves her brother. I never had a brother and was worried about their relationship. Sometimes I feel sad that she doesn't have a sister but she doesn't seem to care. They are BFFs.

 Aunt Emily needed to stop by the mall so we tagged along. I don't shop the mall because I'm cheap. I'd rather go to TJ Maxx, Frisco resale or the goodwill to dig in the countless racks for treasures.

Poor Henry... This is how I felt too.
 But he liked the lego display.
 and the chickfila.
 Aunt Emily. (If you would like to marry Aunt Emily you can email me.)
 Yesterday we ventured down to Dallas again. We met with the Radiation Doctor. It was a very encouraging appointment.

After the appointment I made J take a picture with me.
 By the second picture he was over it.
 I sure do love this man. I'm thankful for him more and more everyday. I'm glad our babies look just like him, too.
(Thank you Dayle for the Matilda Jane pretties. I told Jonathan we had to take a picture to say thank you and that was the only reason he took a picture with me! So, thank you for that too.)

Lastly, I have a question. We start treatment next week and I need some advice. If you have ever gone through cancer or treatment- 
What advice would you give us that you wished you would have known about treatment? 
Example- Make sure you stock the freezer with Popsicles because that is all I ate for 6 weeks. or Wear drawstring underwear. (I'm not sure what that means either I was just thinking of something strange that you would only know if you've gone through this.) 

God is bigger than this and Jesus can fix-it. 

12 comments:

The Kelsos said...

Red rocket daily. YOLO

rebekahbeene said...

What you listen to will be so important. If you guys love music, Scripture Lullabies are so healing. http://www.scripture-lullabies.com/ Pure Scripture in music.

Nicole Enssle said...

My cousin recently went through chemo and radiation. One of the things she told me at the time was to make sure you wear stretchy pants, or something with a drawstring because you bloat a bit getting all the fluids in you during chemo treatments.

Chris Newcomer said...

I went through this 10 years ago. I am an 11.5 year brain tumor survivor, only by God's grace and mercy. I did listen to Point of Grace during my radiation treatments. I also took steroids before and during my 6 weeks of treatment. It made it very difficult to get to sleep and stay asleep. It also gave me an appetite like I've never had before! I gained 30 lbs in those 9 weeks of steroids. Just a warning of what happened with me, but may or may not happen with you. It is normal! Some people do not have to have steroids with radiation, depends on where your tumor is. My chemo was all pill form. Three different types, and then two other meds to help with side effects. I will keep you in prayer, and IF you ever want to talk, have any questions, or anything else, please let me know! This is not a fun road to travel, but I learned so much and grew so much closer to my Jesus during this time. Take it day by day, hour by hour. (Leftcenterfield@verizon.net)

William Mackay said...

Hello Mary,

I use to work with Jonathan at Walmart ISD where we met a few times. I also attended your and Jonathan's wedding at Old Main. Amazing how much time has passed.

I've known a few people who've fought cancer and each of them believed in finding a team who they trust. They consider this the most important thing next to faith and family. In my personal experience I also agree with their advice as I've been dealing with my own chronic medical problems. My advice is to build a team who you trust is helping and doing their best for your family. I hope this helps.

Bill Mackay

Tyra said...

Some advice:
1. Keep a bag packed for the hospital, just in case. Pray that you don't need it. Include a change of comfy clothes for each of you, toiletries, socks, couple of energy bars, small book of Scripture or comforting words.
2. Make a list of movies that make you laugh. Gather DVDs now or check Netflix for streaming availability.
3. Gather some dry-skin remedies. A couple of good lip balms. Non-scented lotion (like Cetaphil).
4. Cut out as much extra sugar as possible.
5. Take notes at every appointment. Speak up. Be a strong advocate. Question anything that makes you uncomfortable.
6. Decide together what is nonnegotiable in your home. What are the biggest priorities? Then, whatever isn't on that list, you agree to let go for now.
7. Radiation has a cumulative effect of exhaustion. It's sneaky. Don't schedule much on radiation days, especially during the last half of treatment.

I am continuing to pray for you all -- for strength, wisdom, discernment, patience, clarity and peace.

-- Tyra Damm

frangeigerjoslin said...

So sorry you have to walk this awful road! God is good, though, and He will give you strength for each day. Tyra has great advice. Here are some more bits:
1. Use paper products=less dishes=more time
2. People tend to feel the need to ask how you are doing. Most don't really want the honest truth. In order to find out who those are, always answer the question, "We're doing well, considering." Those who can handle the truth will likely ask more questions. This took me a long time to learn. My heart broke in two too many times before I figured this out.
3. Use time wasted in doctors' waiting rooms/chemo efficiently: set up automated payments for your bills if they aren't already or pay them from your phone, ipad, etc., answer emails, even file your nails there.
4. Doctor's appointments--or the waiting time--can also double as a free date. Play games with each other and turn the stressful time into fun time (not always possible if one or both of you are not handling the stress well).
5. Do keep your relationship fresh. My husband had no energy and we had no money so we declared Thursday night date night. The kids got to eat in front of a movie, and we had dinner, conversation, and time alone in our bedroom.
6. If you don't want people traipsing through your home in an effort to help, ask for gift cards instead. Or they can do your laundry in their own home, do your grocery shopping for you, or make your recipes (my kids hated having to eat other people's food). If you don't mind people traipsing through, allow people to help at your home.
7. Graciously stand up for your own needs. It's okay to tell people, "No, but thanks for caring."
8. We established a new kind of family fun night. Since Dad had no energy, but the kids wanted to feel like he participated in their fun, we made a picnic on the family room floor (under a plastic table cloth), and watched a fun movie. Dad could fall asleep, but we were together.
9. I don't want to make you feel pressure, but I recommend a second opinion. MDAnderson Cancer Center (in Houston) is amazing. You can follow MDA protocol with a doc at home.
10. Keep a journal if possible of the basic details of Dad's story, and especially the blessings in the storm. Don't miss the blessings. Write 'em down while in waiting rooms.
11. Be careful not to farm the kids out too much. They can feel unwanted when you farm them out too much. Sometimes it's best to allow too much screen time at home instead of farming them out again. This is tricky because you need the help.
12. Try no to have regrets, but remember you are only human. Give yourself grace.
13. Keep your eyes on Jesus, the author and finisher of your faith. "The Lord is good. A refuge in the day of trouble. He cares for those who trust in Him." Nahum 1:7
May the Lord grant you great peace and comfort during this very difficult journey.
I hope I haven't overloaded you!

Haley said...

Hi,
First, I'm praying for your family. You are stronger than you know.
I finished radiation in September.
About halfway through, I became nauseous, ginger ale helped a lot with that. Also, I was very sensitive to smells. I would feel fine in the morning but when I went to treatment, I would get really sick because my cancer treatment center had a TACO CAFE in it! (Mexican food had been my favorite and then all of a sudden I hated it).
I ate at McAlister's Deli almost every day after treatment..soup and baked potatoes made me feel better.
I was also sensitive to the smell of perfume.
Make sure that the music in the radiation room is fitting. I'm 28, and one day that country/pop song "If I Die Young" came on and I was trapped in my mask crying..so definitely find out if you can choose your own music! :)
Above all, try to have faith, I know it is hard and I know there are so many times you will want to say "why me? why us?" but God is there for you. He loves you just as much now as ever.
I know that God chose me for my battle because pre-cancer, I never spoke of my love for Him. I was content to let others believe whatever they wanted, and I didn't share the Lord too often. But now..I tell everyone of His healing power and His amazing love. My life is better because of my cancer battle. (Now, I'm definitely not asking for a round 2..beating it once was plenty! And I will sing of His love forever!)
Blessings to you!!
Anything you need, just e-mail haley.matlock@gmail.com and I will be glad to help any way I can!

just us said...

I was diagnosed with breast cancer in December, I realize that's not the same type of cancer but I wish I would have had more ice packs for hot flashes, and for swelling from surgery site, Chapstick, I never had enough, when people ask you what do you need, gift cards, I was blessed with meals brought but sometimes I didn't feel like eating at that time or it was the to spicy. I am grateful for the meals that were brought though. When you are tired rest, don't let the medical bills stress you out.

Kara said...

My dad just passed a few weeks ago of a Brain Tumor that was cancerous. It was a gliobastoma and it was right behind his right eye. They removed it once they found it (out of the blue he had a seizure) and he seemed awesome. Wanted to walk, energy, everything. They started chemo and radiation and it was hard. I will tell you that family support - just being around - going to dr.'s appts., celebrating and cherishing the "good days" are a treat - soak them up. When he has energy - ask him questions, have him tell you stories he may have never shared, go on walks, make your favorite meals. There will be seasons where he won't eat, won't have energy to move, and his talking could be limited, so we learned to share with him how we felt about him in all the good moments and those are the most precious memories. Friends, Prayer, Patience, Support, Flexibility and good friends are what will get you through this rough season. I am praying for your family tonight that God's peace will surround you and lift you up and walk you through this with Grace and Mercy. Blessings to you.

DeLynn said...

1. Trader Joe's Triple Ginger Snap Cookies can be very helpful in combating nausea (plus they are just good!).
2. Use your phone or get a small recorder to record important appointments. You can go back to listen to details again and also the people closest to you can listen for themselves rather than you having to explain everything. Ask first, but I have never had a doctor refuse.
Praying for you!

Ann Matthews said...

My husband always wanted fresh fruit, tastes do change and he loved the freshness of fruit. He also wanted lots of ice water...he also didn't always want to be talking about cancer (something I needed to protect him from). People are always asking question and this may be something that you will have to field for him...don't be afraid to let people know about that either. God will be walking with you on this path...he will be carrying you when you need it!