Thursday, July 28, 2011

It was a long day in Effingham!

My appointment for chemo started at 8:15 with bloodwork to make sure my numbers were in range to get chemo.It was 10:30 before the Dr saw me and then I went back to get chemo only to be told I had to wait some more because the usual pharmacist was off for the day and the contractual pharmacist was not there at 7:30 (usual time for him to show up). At 8, he still wasn't there so they called him and he thought he was suppose to be there on Thursday instead of Wednsday! So, at 8, he was just leaving St. Louis. It was 7 pm before I got home last night. Thank goodness Pat actually cooked supper and had it just coming off the grill when I got home.More about my visit with the dr: My platelets were 92. IF they go below 50, they will not give me chemo until the number goes up. It might mean changing the Gemzar (which is one of the chemo drugs) to a lower dose until my number comes back up and then upping the Gemzar again. It is all a numbers game with your bloodwork. I hate the thought of lowering the Gemzar dose but I could "bleed out" if it is not controlled. I will make a call to Springfield and MD Anderson before I let Effingham change my dosage.....3 heads are better than one!! Dr. Dy has ordered bloodwork at RMH for next week to see if the platelets go lower or starts to build back up.
Good news.....I gained 2.4 pounds this past two weeks. It seems trivial to some but when you are fighting cancer, the last thing you want to do is lose too much weight.
More good news, my family (this includes my children, Pat's daughter Kate, all the boyfriends/spouses, and the little McKenna, plus Bill & Deb Weiler) will all trek out by plane or car to Nags Head, North Carolina for a week of R & R. I'll be the one covered in SPF50, a large brimmed hat, long sleeve shirt, and a book about cancer in my lap. Under a tent!!  Oh well...there have been two shark attacks in shallow water out in that area so it doesn't hurt my feelings to NOT be in the water 98 % of the time this year. We planned and put down a chunk of money for this place before I had my diagnosis or we might have re-thought our destination. Another good thing is I will go three weeks without a treatment which should also help build up my platelet count some more.
I want to give a big Thank You to Lori Harrison and Debbie Reed for volunteering to bring a meal over the weekend. I am sure by Sat/Sun. I will REALLY be thanking them!
I am going to leave you with a verse from a book I read every day from Beth Moore:
You say to me Lord, "My grace is sufficient for you, for my power is made in weakness." Therefore, I will boast all the more gladly about my weaknesses, so that Your power may rest on me.
You will never leave me, Lord. Never will You forsake me. You are the only absolute guarantee I have in all of life. Help me cling to the one thing I can never lose.
I hope you all have a great rest of the week and may God bless you and yours!

Tuesday, July 26, 2011

Chemo AGAIN tomorrow....

I used to look forward to my chemo but it seems lately I dread it due to the 5-6 days afterwards where I am so tired. It is usually mid afternooon when I really notice I need to lay down and rest. I think this could be a long term plan for the next year so I should just be thanking God there is a treatment to stop my tumor growth and start shrinking it! How's that for positive thinking and ALOT of faith that God will shrink my tumor.
MMy rash from the Tarceva pill I take daily has made my rash appear although since the doctors at MD Anderson changed the antibiotics/cream for the rash, it is definately more bearable. My belly burns but I have also read that is a side effect of this pretty $4,000 a month pill!!
Chemo is tomorrow and Amy is going along to keep me company. I ordered three books today to help with nutrition. I have got to learn the right foods and then also a way to keep my weight where it is. I have been hitting the antique store on South Whittle Avenue for lots of fresh veggies.
That's about it......just wanted to let everyone know I am doing fine!!

Tuesday, July 19, 2011

Almost a week after chemo......

I thought I would update since my second chemo treatment (after the blood clots). No sign of new swelling anyway. I did have a few nose bleeds a couple of mornings in a row but I think my Lovenox shots (blood thinner) needs to be reduced a little due to weight loss. I have been tired this round and I totally expected that from the previous treatments....maybe even a little more so this time.
You know....I have talked to several people who have either had chemo or are doing it right now and have several side effects that I am not experiencing. I am so thankful for that!  BUT most of them have a curable type of cancer and my chance of that is slim without the help of the good Lord! So every time someone says they are praying for me or their church has me on their prayer list, I tear up because I know in my heart that GOD is the only person that can save me from this dreaded monster! SO... please keep praying!
I lost my Bible this past time I went to chemo. I hunted in the house, I hunted in the car, and thought..hmmmm...musta left it at Crossroads Cancer Center when I got my treatment. The daggone devil hid it in my trunk! I was looking for something else and opened up the trunk of the car and there it was!! I had other books related to cancer/God at home to read but NOT the Bible! I wanted to curse at the devil for leaving it out in the heat of my trunk for almost a week (not to mention I wanted to start reading Romans) BUT instead I thanked God for showing me where it was!
So, I have been a little (ok...alot) teary eyed this week due to Amy having two baby showers over the weekend and just even the mere thought of maybe not being around to see all of my grandchildren grow old. I tell myself that is the devil inside my head but I also know it may be a reality I have to face. I will continue to pray for a cure for this dreaded cancer I have. My cancer is so rare that it is about 1% that goes to research to find a cure for it(from the American Cancer Society). The Cholangiocarcinoma Foundation does more research/outreach than anyone else worldwide.
I am happy a friend from Texas is coming home soon and am looking forward to visiting with her.
I pray for many families out there going through tragedies in their lives (like the McDowells and Shyrocks) but hope for speedy recoveries. I pray to God daily to take away the sins of the earth, to heal the sick, and everlasting peace.

Friday, July 15, 2011

Day after chemo......

The day of chemo started out with bloodwork (as usual), then seeing the dr before starting the chemo. Dr. Dy said my cancer marker went from the 400's down to 313 so the more it drops the better. Dr. Dy said it is not totally reliable as when I was in Springfield, he thought my cancer had spread all over my lymph nodes, lungs, and basically my whole body (he even called Pat and told him of his concern that this had happened due to all the clots and high cancer marker of like 465). body was all out of whack and it just made all my blood numbers jump. Thanks to the good dr for alarming me for nothing. Don't worry....I let him know to NEVER tell me news like that unless he has proof. I also told him I was the patient NOT my husband and to call me next time. After finding out he was wrong about his "theory", he called and apologized.  I think with cancer markers, you have to take them with a grain of salt....a little bit. Anyway, I am over it and ready to fight my monster again!
Chemo went fine although I am a little tired today. My bloodwork looks great and hemoglobin is steady and the same as when I left St. John's.
This blog was written over two days. The above was written on Thursday and now it is Friday and I am just finishing it. Got up and walked my 3 miles but I am a little more tired today. I was in bed by 8 last night and slept pretty well. So....basically everything is quiet and stable right now and I do expect a few relaxing days (besides two baby showers for Amy over the weekend).
I am thankful that I am able to get out of bed every morning and walk from 6-7 am before being at work at 8. I am thankful for God who is always there for me. I am thankful for my family who is also there for me to help cook, help take me to chemo, and just come and visit me when I don't feel like going anywhere. I am so thankful for all the cards, phone calls, and prayers (ESPECIALLY ALL THE PRAYERS).
God bless!!


Thursday, July 7, 2011

A visit with Dr. Goswami

Today was my dr. visit with Dr. Goswami in Effingham (the heart specialist from Prairie Cardiovascular Health Institute). I had an echo cardiogram to make sure the chemo had not damaged my heart (doesn't happen alot but he wants to keep an eye on me). He just could not believe the difference from day 1 when he saw me all swelled in the face/neck area. He again...didn't recognize me because I looked 150% better than the first day we met. He also...again....took my picture to show his colleagues the difference from day 1 to today.
The man who did the echo stated he would love to trade hearts with me (I guess all that bike riding/walking has atleast gave me a heart of steel) as he just had heart surgery 3 months ago.....I told him I would trade him hearts if he traded me livers and that I guaranteed I would live longer with his heart than he would with my liver!!! 
Dr. Goswami reassured us (Pat, Jennifer, and I) that there should not be a problem again with blood clots since I am on the blood thinner.
 While I was in Springfield for 8 days, I was reaquainted with an old schoolmate from high school who is now a Physician's Assistant or Nurse Practioner (can't remember which) and she was
 on the same floor at St. Johns that I was on. Her name was Donita Polk Schrey (who married Mike Schrey). She graciously let Jenn spend the night at her house one night instead of the couch at St John's. Donita and Jenn talked and Jenn found out Dr. Goswami loved the Dallas Jenn ordered him a hooded sweatshirt (from all the girls) as a small "Thank You" for saving their moms life. He loved it when we gave it to him today! If all doctors had the bedside manor of Dr. Goswami, there would be alot less people who put off going to the dr.
I want to give a big shout out loud THANK YOU to Donita for checking in on me everyday...sometimes several times a day and gave us her home number so if we needed anything we could call her.
It has been a good week so far and I have worked everyday (only two hours today due to dr. appt).  Chemo on Wednesday and we will see how hard it hits me this time. Amy, Samantha, and I have upped our miles to 3 miles per day......I just pray God gives me the strength to keep walking as the chemo gets more saturated throughout my body in the weeks/months to come. My Tarceva rash is just starting to "bloom" on my face but I do think the meds MD Anderson gave me are working better than the Effingham oncologist gave me.
Healing of the body is promised in both testaments of the holy I will pray extra hard for not only more healing, but also thanks to the Lord for healing me and having a good report today with Dr. Goswami. I have a long way to go but all is stable at this point and I will take that any day!
 Hugs & Prayers,

Monday, July 4, 2011

Happy Fourth of July!

It has been 5 days since chemo and I am doing pretty well. Chemo was all day Wednesday, I worked all day Thursday & Friday, I trimmed Amy's baby room with paint on Saturday, Sunday was church and alot of just resting my bones. Today is the 4th and we are suppose to go to Bill & Debbie Weiler's for a pool party/cookout. If it continues to be a rainy/cloudy day, we might move the cookout to here.
Amy and I have been walking two miles a day since coming home from MD Anderson. I am beginning to wonder if that is why I am not maintaining weight. I have lost appr. 10 pounds in two months.
I see Dr., Goswomi this Thursday (the dr. who saved my life from all the clots blocking my veins). He will do an echo to see if my blood has formed any new clots. My blood does not like the chemo so I am prone to clots forming. Hopefully my Lovenox shots are working and all is clear in my veins.

 Amy, Jenn, and I (signed up) to walk in the MS Event that Marla, Krista and Tony Adams are hosting. Everyone needs to help support this worthwhile event that also needs a cure!!  I will receive chemo on the Wednesday before the event but even if I am as slow as a turtle, I will walk and finish this walk!
God Bless America and everyone on this 4th of July!!