Wow it has been a long time since I updated…
I joined a Cancer Support Group. I really really enjoy it. It is nice to know that the people you are talking to really get what you are feeling, because they are feeling it or have felt it too. I’m the youngest one in the group, but I look at that as a blessing because I caught my cancer early in my life 
Emma was in ICU Tuesday and Wednesday of this week (ICU is standard anytime they admit her). She is fine now! I really hated being up there, especially since we are both Immune Suppressed (Emma because of her transplant, me because of chemo) so I pushed to get her home rather fiercely. They were just observing her for a fever, and her labs were wacky… I told the doctors that I can do everything they are doing with her, at home, and protect her (and me) from exposure. Once I spoke to the transplant cardiologist, he agreed. She has been fine since we came home, but a low grade fever of unknown origin sends her transplant team (and obviously her parents) into a frenzy! Once rejection was ruled out, we were on our way… It really took a lot out of me though, I cant imagine if something was really wrong, and I was really thankful that it didn’t happen while I was on chemo!
I haven’t been sleeping well (if at all). I usually wake up about 2am and cant go back to sleep until 6am. I can sleep on the couch, but wake up with a horrible back ache, so now I am taking three Extra Strength Tylenol and Benadryl before I go to sleep every night. We are going to switch mattress’ with my parents (they have a soft mattress in their extra bedroom which I can sleep well on). We just bought this mattress, it is Tempur-Pedic Memory Foam, but it is so very hard (and hot!). I will talk to my Oncologist about sleeping aids this next visit, because I could sleep fine before I was on Chemo.
My next MRI and oncology appointment is Oct 15th. Then I start chemo again on the 18th of October. I understand why they give you 23 days between… They are hoping you forget how horrible it is so you will take it again! They told me that the first two times would be the worst, and that it would be easier after that…. I am holding them to that, because it was unbelievable horrible the first two times. I am going to talk to them about some of my side effects on the 15th in hopes that they can offer suggestions on how to make it more bearable. I cant eat, sleep or function when I am on chemo, and it shouldnt be that bad. So those are things I will discuss with them.
I heard this song on the radio while driving with my dad. I hope you enjoy it, and really really listen to the words. If you can’t watch the video, please read the lyrics posted below.
Please do not take one moment for granted.. you just never know.
Point Of Grace – How You Live
From the album How You Live
Wake up to the sunlight with your windows open
Don’t hold in your anger or leave things unspoken
Wear your red dress, use your good dishes
Make a big mess and make lots of wishes
And have what you want, but want what you have
And don’t spend your life looking back
Turn up the music
Turn it up loud
Take a few chances and let it all out
‘Cause you won’t regret it
Looking back from where you have been
‘Cause it’s not who you knew
And it’s not what you did
It’s how you live
So go to the ballgames and go to the ballet
And go see your folks more than just on the holidays
Kiss all your children, dance with your wife
Tell your husband you love him every night
Don’t run from the truth ’cause you can’t get away, no
Face it and you’ll be okay
(Chorus)
Oh, wherever you are and wherever you’ve been
Now is the time to begin
So give to the needy, and pray for the grieving
Even when you don’t think that you can
‘Cause all that you do is bound to come back to you
So think of your fellow man
And make peace with God, and make peace with yourself
‘Cause in the end, there’s nobody else
Have a blessed weekend, and do something that you normally wouldnt dream of doing 
Welcome Back Heather! So glad to see a post from you this morning! Praying for you!
WElcome back!! It is so nice to hear from you again. You are in my prayers and thoughts often. May God continue to shower you and your family with His blessings.
Glad you’re writing again. Also glad you found the support group. They can be a world of help and support! I’ll be praying for your chemo and for Emma’s fever/healing and your healing, too! Try drinking chamomile tea at 2 am. It helps me. Anyway, know I’m praying for you and yours.
~mtnmamaof4
It is so good to hear from you and I am so happy to hear that Emma is OK. I am praying for both of you to be protected from sickness and I pray that you would be able to sleep better at night.
Have a great weekend Heather!
Good Morning Sweet Heather,
It is so good to “Hear Your Voice” and that you and Emma are okay. I am
sending you (((BIG HUGS OF LOVE))) from California today and hope you can
feel them. How appropriate for you to be the youngest in the support group. The must love you and you are going to be a blessing to them too.
Be well this weekend and prayers continue for your strength and healing.
And of course HOPE and LOVE.
Love you, Laurie in Ca.
“Who is this? He commands even the winds and the water, and they obey Him? Luke 8:25.
an excerpt from Amy Carmichael’s devotional titled, “I Come Quietly to Meet You”:
Even.
Is there something you are facing — whether in your outer circumstances or in your inner character — that seems impossible to command? Something that has baffled you and outwitted you a thousand times, and appears that it will win over you in the end? Something as deaf to your command as the wind or wild waters?
Don’t despair. Don’t shrug and give up.
Our Lord — your Lord and mine — can command even the most difficult, unruly thing that seems as if it will mever be commanded.
Let His Word “even” be a comfort to you. He who commands even the winds and water (and they must obey Him) — He can say to that “even” of yours, “Peace, be still.”
Amy Carmichael, I Come Quietly to Meet You, an intimate journey in God’s presence. arranged by David Hazard. pg 79.
Heartfelt prayer for you and your family is ever before the Lord…
Linda
Awesome song. They did a free concert up here in the Chicago ‘burbs and I got to hear it live! That song really struck a chord with me as well.
If you ever need to chat, you know I’m here and where to find me.
((hugs))
Thank you . . . that song was just what I needed today! I’ll be praying for God’s blessings upon you, Emma, and your entire family!
It is SO GOOD to hear from you. You chose a wonderful song, too. We pray that YOU get the rest and peace you need and that Emma Grace stays well. Heather, you are a strong woman – even if you don’t think so sometimes – and you CAN get through this. You are a fighter and a winner!
Love to you and your entire family,
Betty (Oklahoma)
I’m glad you’re back! Those are wonderful lyrics.
Like a drink of water……so glad to hear from you, and to hear you sounding strong. I was concerned. So thankful Emma is doing better. God never blinked; He has you both – and your whole family – in His safekeeping. Praying.
Love,
Dee Dee
Great to hear from you sis!!!
Love Love Love that song! So True! Thanks for sharing!
Not taking one moment for granted. Thank you for reminding us to do that! thinking of your family.
thanks for the reminder
glad to hear from you
glad that emma grace is home
hope you can rest
praying
YEAH! You are back! I am glad that all is well and Emma and yourself are on the road to getting some rest. Praying for you!
always praying for you and your family
Oh I am so glad you are back. I hope Emma is better really quickly.
Good to see you post, I was worried about you and your family. Continued prayers being sent…
It’s nice to see you back!
It’s good to “hear” your sweet voice again. We’ll be praying that this time around will be easier and that they can offer some help for the side-affects. Have a blessed weekend.
Welcome back – BEAUTIFUL song and thanks once again for the reminder, it moved me so much I put it on my blog for today too.
hugs, and if you are ever over here in palm beach county, I’d love to meet you.
((((((Hugs)))))))
Praying for you. That is currently my favorite song. Thanks for posting the video.
Ah, a challenge…what would I normally not do? I will keep my eyes open and see!
I am praying for you, Heather…for you to sleep…for Emma and Mark and all your family.
God has blessed you with such a remarkable family. Your dad’s words are touched by the power of Christ!
May the light of Christ surround you and the love of Christ enfold you and the power of Christ protect you evermore (words to a benediction our choir used to sing…I’m singing it over you this moment).
Heather,
I have missed you! Have been praying . Every time I open your post, I pray as it is loading.
Don’t hesitate to ask for something to help with the sleeping issues.
Love,
Lynn
John 15
It’s nice to see your update. I was praying for you and trying not to worry when you hadn’t posted in awhile!
I enjoy reading you dad’s blog too!
kellie
Oh Heather =O)
Been thinking of you and praying and wondering how are doing and praying for your family,
I will keep on praying, and the song, the lyrics….thank you, brought tears to my eyes, and I am sending it off to someone special…my daughther that I do not get to see,
Blessings, and have a great weekend.
Heather,
So good to hear from you!! I have been praying for you daily! I will pray again for your little Emma Grace and that she will be fever free and remain healthy. I will also be praying for you on the 18th as I know how nerve wracking an MRI can be. I will be having another follow up scan ( P.E.T.) on the 17th ( day before you) and so I know I will remember to pray for you! This is a scary one for me and yet a milestone as it will be one year since finsihing chemo.
I am so glad you were able to join the support group and I am refreshed by your wonderful attitude of “catching your cancer while still young” I am sure you will be such an encouragement to the others there. God is truly giving you a ministry beyond what you may have ever dreamed. I am sure it will continue once you are finished with treatment as well. That truly has been one benefit of having cancer, and you are so right…no-one really understands unless they have been through it. You will have the benefit of knowing what to say and what not to say, when to talk and when to just listen. I will pray for many opportunites for you in the days ahead to comfort others with the same comfort with which you have been comforted.
Love,
Gina
So nice to hear your beautiful voice again Heather.
Thanks for the update and knowing about Emma, we will surely pray for her and you.!
I want to thank you that even though you are so sick,you took the time out to go and visit Minerva.
Only people like you can fully understand what she is going through.
God bless you dear child…..Love Terry
So glad to hear from you! Glad that Emma is doing a little better. Kisses and hugs to both.
The words to the song were beautiful. They really made me think.
So, I am stopping cleaning for now, and our family is going to the pumpkin patch. Thanks for the shove out the door.
Praying for you,
Julie
hey heather…just wanted to say i am thinking about you. and praying too. your dads blog is such a blessing! thank you for sharing the link with all of us.
sweet dreams! i hope tonight brings your body sweet deep rest.
shalom and love….
A big fan of support groups-so go for it!!
I have been thinking about and lifting you up in prayer.So you aren’t forgotten.
Take care
It’s good to hear from you. I was hoping you were doing o.k. I’m glad you joined that group. That is so good. That was a beautiful song, thanks for sharing it.
JoAnn
Just a thought Heather, when I had my chemo it had steroids in the mixture.
I couldn’t sleep and my mind was going one way, and my body couldn’t keep up. They said it was in there for nausea control. When I asked if they could remove it and they did, I was able to sleep great and my mind and body were on the same page. Like I said, just a thought. Praying for sweet sleep for you and no more fever for Emma.
Laurie in Ca.
Heather,
)
I am very glad to hear from you. It’s wonderful you have a support group now. And the song was just great!
Heather,
So glad you are going to a cancer support group. They really are helpful and for me it was just good to beable to be myself, knowing they had been there also.
And the song, says it all, after I recovered from my cancer treatment, I took that song to heart and started using my china, and other fancy things that I was saving for special occasions. Now, it’s special to fix a simple dinner for myself and husband and use the fancy stuff, surprising how good it will make a simple meal look.
Glad to hear that Emma is home and doing better. Will keep you both in prayer.
Hugs,
Norma
So good to hear from you. Loved the song! Glad Emma is home too…hospital life is so depressing. David’s brain cancer has returned and he’ll be starting Temodar again soon. I feel your pain and I’m sure you feel mine as well. Thanks for being such a blessing to me.
Just had to log on at home to see if you had blogged this weekend. YAH !!! Glad to see you back. Working on World Communion Sunday stuff for tomorrow. I will praise the Lord knowing Christians all over the world will be sharing Communion together. We are one in the Spirit, it’s so good to hear from you Heather !!
Hello Heather,
It’s been awhile since I posted. I’ve been pretty ill recently myself but I do keep you close in prayer. I got to thinking about your fatigue and how it is probably affecting you and your family. I know I suffer from profound fatigue from Sarcoidosis and Grave’s Disease among other health issues and this program has been a big help. So I thought I’d pass the link along.
It is a personal care assistant program through the state department of rehabilitation. Each state has them. They can offer help getting medical and other aids such as canes, walkers, mattresses, that will help you maintain your independence at home, etc.. The goal is to help people who are disabled through illness or birth defects to stay at home with their families and also to help get back to a vocation if that is your goal in the future.
http://apd.myflorida.com/news/docs/pcas-report.pdf
Heather with the problems you are having you may want to check into this program. I have had cancer and have a great many other health issues. My 22 year old daughter has cerebral palsy and still lives at home and is eligible for this program as well. It provides you with help at home doing routine health and personal care as well as some housekeeping chores.
It is paid for by each state (each has it’s own rules for eligibility so you need to contact them) and some states allow your spouse or family members to provide your care and get paid, which can help families with financial help during medical crisis’s.
I hope this is of some help to you and maybe to others who may read this and may get help from this program. They just need to check their state department of rehabilitation for info on the program.
Sending prayers to you and Emma.
Christina
Hi Heather,
It’s great to get an update from you! I think about you almost everyday and I pray that this next round will not be as bad for you.
I am also praying for Emma as well.
Blessings,
Bonita………..
Heather, it is so good to have an update from you. I’m glad you joined a support group.
My sister in law was admitted to the hospital last week. The doctors found a mass below her breastbone that is the 8″ x 10″ and is 6″ deep. She will have surgery next week. She is single, 48, alone, and very independent. Please pray for her and pray that she will humble herself and let others help and support her.
I thought of you right away when we got her news and will share your blog with her. Thank you for being such a great witness for Christ!
I continue to pray that you and Emma will have more good days than bad ones. God holds you in the palm of His hand!
Blessings, Laurie in TN
So Glad to see you back again, I was getting a bit worried about you, especially as you haven’t answered my last couple of e-mails to you.
Delighted to hear Emma is doing Ok . I know and understand your concerns about being Immunosuppressed, you feel like you are always looking over your shoulder.
Take Care and hope you have a better week
Lots of Love Carolynn xx
I’m so glad you updated! I’ve been worried about you and have been praying for you. I’ll keep Emma and you in my prayers again tonight…*hugs*
Welcome back, cyber friend! It’s so good to hear from you – good news or bad news!
Thanks heather that song ministered to my heart it just took a hold of my heart and even as the tears came..I was truly blessed…. I will share it also to bless others…. Hugz
What a beautiful and timely song, for all of us. Thanks so much for sharing. I hope you are feeling a bit better each day. And if you haven’t seen this video… it reminded me of what you might have been like as a little girl. : )
http://www.godtube.com/view_video?viewkey=9e7c4b40cf5a13cea6ca
Welcome back! Great song! Praying you get some much needed R&R before the next round. Praying Emma Grace is feeling better.
Thank you, Heather…
God is using you to teach us how to LIVE.
You are making a difference.
Be encouraged! Press on! We and the angels are cheering you on!
You are loved.
It’s all good. Because He is here. And walks with us. Right till the finish line. Let’s go!
((((Heather))))
Glad to see you are back! It was so neat to read your post after I had just volunteered some time to help a friend clean up her yard. I spent over 2 hours and created 9 trash sacks and one limb pile…and still not done. She was so overwhelmed that she didn’t know where to start…so I said, I would be there and we would start this together. It has been a tough road since her husband up and left. The song you chose heart felt! I am just so thankful that I can give of my time, self, that I am able. I am thankful that you can give of your time and self to post about it in your blog…most importantly, that you are God focused! My prayers have been with you and I pray for some smooth sailing for a little while for you.
Many Blessings~
Paula