Yesterday was my grandparents’ 58th wedding anniversary. It is also the day my grandfather signed the papers to allow Hospice to take over care of my grandmother. She has had a very hard go of it lately. She is in constant pain unless she is sleeping, which is now most of the time. Our family has been through so many hard things this year. Well, actually for the last few years. So today, my heart is heavy and sad.
Please continue to pray for us.
Well, today I went back to work for the first time in about 3 weeks. I am feeling some better, so I thought I’d start trying half days. Unfortunately, I was a bit sick this morning, but I managed to make it in anyway. I am going to work in the afternoons since mornings seem to still be a bit rough. Everything went well, but I came home exhausted! It pretty much wiped me out for the rest of the day. The kids and I had to just sit and watch TV when we got home because I could not do anything else. They did really well and there seemed to be minimal arguing. 
I talked to my very thoughtful husband on the way home and he could tell I was whipped. So, he came home early and surprised me. Things were going fine at the time. The girls and I had migrated to my bed to watch TV and rest and McGrooter was still watching in the living room. However, things would have really fallen apart at dinner time because I’m not sure I could have gotten up and fixed anything. So, my knight in shining armor was here to save the day. He did dinner, baths, and bed. I managed to get homework done with the oldest and read with him.
Not bad for the first day back. Now off to bed to try again tomorrow!
Normally, my birthday is not something that I would announce for fear of sounding obnoxious. Also, as I have gotten older, each birthday takes a little more of a mental adjustment. HOWEVER, this year I sing with joy…it’s my birthday, it’s my birthday!!
Yes, this year, as you can probably imagine I am thrilled to have another birthday. I know I should have had this attitude before having something as traumatic as cancer enter my life, but, unfortunately, it seems it often takes something very serious to make me evaluate what’s important and count my blessings. I’ve spent too much time wishing that I was someone else, somewhere else, doing something else in some other life. But I think I’m finally beginning to grasp how much God really loves me because He made me to be me – freckles and all!
I have done a great deal of reflecting during my time at home. (Well, between episodes of Murder She Wrote.) I’ve realized that there are a lot of things that I would still like to do, many places I’d like to go, and plenty of people I’d like to see. However, I may not get to cross everything off my list in this lifetime. Life is actually pretty short, but eternity is long. It’s not about what I’ve done or where I’ve been. It’s about Jesus. Knowing Him personally is the most important thing for now and eternity. Yes, I’d still like to work on that list of mine and accomplish some goals, but more than that, I want to know Him more and see others come to know Him.
So my birthday wish today is that you may be “found in Him, not having a righteousness of [your] own that comes from the law, but that which comes through faith in Christ, the righteousness from God that depends on faith” (Philippians 3:9). When all is said and done, this is all that will matter.
Happy Birthday to me!
VERY exciting! I am about to get ready to go to radiation for what I pray is the last time ever!!! Thank you Lord that this part is over!
I have two more treatments – today and tomorrow! I cannot believe that the end is finally here. This week has been a pretty good week. I am still having side effects, but they have not been as bad as the previous two weeks and, for that, I am very thankful. I get to stop taking my chemo pills tomorrow also and I am thrilled about that since I really think they are the culprits in my diminished ability to eat.
I had my 2 week check up with my oncologist on Tuesday. He is encouraging me to explore my other options as far as insurance so that I can continue my care there. I also found out that I have a UTI, but, thankfully that can easily be treated with antibiotics. I also found out about the next round of treatments. I will have a 4 week break after tomorrow during which time I will have the port surgically implanted. Then on October 16, I will start the next round of chemo only. It will take about 3-4 hours that day and I will go home with a pump. Then I go back on Thursdays to have the pump unplugged and won’t have to go back for 2 weeks. This will continue for 6 months.
I feel very blessed to have only experienced what I did. There is a man that either goes before or after me, depending on who arrives first, at radiation. He has been battling cancer since 2004. It started as a wart like thing on his ear. They removed it and thought they got everything. Then it came back and he had surgery again. This time it had spread all around his head. They are treating his head and neck. The radiation has made him extrememly sick. So much so that he was being admitted to the hospital after his treatment today so that they could give him a feeding tube. The radiation is affecting his brain and he is “talking out of his head” (according to his wife) and gets very dizzy. Last Friday he came in after me and, unfortunately, I was occupying the restroom and he was knocking furiously and desperately asking someone for another bathroom. They showed him the hidden bathroom that is next to the one I was in. I could hear him violently throwing up. It was so horrible! I began to tear up and just pray for him. Please pray for Jerry. He is only about halfway through his treatments this time and is already so, so sick. He and his wife have a 12 year old granddaughter who lives with them and a 4 year old grandchild who spends every other weekend with them. His wife has also been sick and was in the hospital last week. They are really having a hard time. Please pray for them.
My grandmother was also admitted to the hospital night before last. She is in pain and is not doing well. I went to see her today after radiation and, ironically, she is in the exact room I was in after my surgery! I saw several of my nurses and even got to talk to one of them. She even remembered that Seth and I were blogging about our “journey.” Good memory! Please pray for my grandmother. She is having to go through a series of things to help empty her colon and it is causing her a great deal of pain. My grandfather and my dad are completely worn out.
I know that we have much to be thankful for in our lives. Sometimes it is hard to really grasp that and have that attitude when so much seems to be falling down around us. Please keep praying.
I have actually had a really good day today! Praise the Lord! I don’t know if this is what made the difference, but I took my anti-diarrhea medicine at the same time that I took my chemo pills this morning. I did not experience near the nausea or diarrhea that I have every day. What a terrific feeling!!! This may be too much information for some of you, but I just had to share. It is so WONDERFUL to feel better. Let’s pray it lasts for this LAST week of radiation.
That’s what I find my children these days. Here are some things that have happened recently that I want to record so I can remember, particularly when “chemo brain” sets in.
Aggie has started “big school” or “real school” now. She is no longer attending her “church school.” So, she has begun to play school at home with her babies. The other day she had about 10 dolls lined up in her room and there was a small sheet of paper, with writing on each, beside each doll. I couldn’t hear all that she was saying, but was able to catch her telling the children, “Now, all of you will not get nametags today…” Then, a little later, there were “children” in the living room two by two in different places. I asked her what they were doing in the living room and she said, “These are the car riders and these are the bus riders.” (Well, of course!) And, then I heard her telling one of the “children” as she brought them in the living room, “You are going to the principal’s office.”
Munchkin asked for a banana for breakfast one morning. She said, “And leave that thing on it.” I asked her what that thing was called. She said, “a banana holder.” I have also asked her what she wanted for Christmas. She listed several animals. When I tried to clarify later, she said, “I’ll take a rabbit that can whisper in my ear.” (Not sure where to find those!)
On the way home from school one day, McGrooter and Aggie were having a conversation in the back. I could hear him asking her to play a computer game with him when they got home. She kept saying no. He kept pressing the issue and said, “They have girls on there.” I guess he was thinking she did not want to play an all boys game. He named the girl on there and said, “She’s beautiful!” Now I found myself almost swerving into the other lane, but managed to maintain control. I’m quite sure he only meant it to convince his sister to play with him!
I do not even begin to know how to express my gratitude to so many people! I have been unable to keep up with everything that has been done for us and have not sent out thank you notes. I did one small batch right after surgery and that was it. I want desperately to send each person a personal thank you note, but I am so overwhelmed with all that has been done for us that I am afraid I will miss someone. I also haven’t felt very well either.
I’m also afraid to mention names on my blog. So many people have done so many thoughtful things for us that I’m afraid if I tried to even say thank you on my blog, then I would miss someone. So, for now, a somewhat impersonal and, hopefully not tacky, general thank you is all I can offer. Thank you for the prayers, cards, phone calls, visits, gifts, meals, cleaning, yardwork, keeping of our children, and purchasing of Southern Living in order for me to reap the benefits…did I forget anything? All of these gestures mean more to me than I could ever adequately express. I find myself wanting to write more, but am speechless (or wordless as the case may be).
Thank you, thank you, thank you!
Yesterday I finally felt well enough to begin calling about medical bills and insurance. I had noticed that on my EOB (explanation of benefits) from the insurance company that some of the doctors were listed out of network. Well, of course, that means that the insurance company does not pay very much toward their services and leaves a heftier bill with the patient. However, I do not use out of network doctors. I have made sure all along that my doctors participated with my insurance company. So, I dreaded calling the insurance company and having to sort all this out.
I first called each place from whom I had received a bill. I verified how much I owed and how much insurance had paid. This is when I found out that the pathologists and anesthesiologists do not particpate with my insurance company. Now the frustrating thing about this is that I did not get to choose these doctors. My bill with the pathologist was more than $500! The lady there told me to call the insurance company and tell them that I do not have a choice concerning these doctors and that sometimes they will pay more toward the bill. After making my list I finally called the insurance company.
Now the last time I called the insurance company, I was never able to reach a live person and was disconnected three times. I was already feeling defensive calling this time. They have one of those automated voice response systems that you must first “speak with” before you can move on down the line. I’m not sure if it is specialized enough to detect irritation in a person’s voice, but my was obvious. I finally got a representative and, believe it or not, he was very nice and helpful. I went through each and every question that I had and he dealt with each one.
I found out that there is a provision called RAPS (Radiologists, Anesthesiologists, Pathologists and Labs) that will pay in network benefits because patients do not have the opportunity to choose these doctors. So, my claims could be refiled under RAPS and in network benefits will apply. That means that rather than owing over $5o0 to the pathologist, I will only owe approximately $20. Can you believe that?! What a rip off! If you do not take the time to scour your explanation of benefits and your bills, you are probably paying too much! I realized I had already paid too much on my son’s surgery in May and had that claim resubmitted also.
Even though that took all morning to straighten out, all in all I felt relieved after it was over. Most people I spoke with were understanding and helpful (except for one that made it clear that it was my responsibility to follow up in 30 days concerning the insurance or I could be turned over to collections!). I was actually thinking some positive thoughts about the insurance company until I got home after radiation and got the mail. There was a letter from the Diagnostic Clinic (that houses my regular doctor and my oncologist) that said effective December 31, 2007, they will no longer accept my insurance. According to the letter, they have tried to work with the insurance company, but the company is not willing to pay the doctors any more in benefits so they are having to terminate their relationship.
I am now stuck having to decide whether to change all my doctors or my insurance carrier. I’ve also got to find out what this means about my next round of treatments. I will be right in the middle of treatment when this divorce occurs. More frustrating details!
I only have 8 more radiation treatments as of today. That sounds pretty good. Unfortunately, it still doesn’t feel pretty good. For the last two weeks, I have had some difficult side effects to deal with on a daily basis. It seems I may have the extreme end of side effects. It really doesn’t surprise me though for two reasons: 1) it doesn’t take much medication to affect me and 2) I have my own, personal theory. Now don’t ask me where I got my medical degree because I said it’s just a theory and I haven’t even discussed it with the doctor. But, I’ll go ahead and put it on the world wide web. The people that I’ve talked with that have had rectal cancer had radiation first and then surgery. So, the radiation was working on shrinking a cancerous tumor and then they had their surgery. Their side effects seem to be less intense until the very end of treatment. My theory is that since I had surgery first and my tumor is gone, my radiation is only working on killing any microscopic cancerous cells that may have passed through the wall of the colon. That means that it is also working on a great deal more healthy tissue. I know that might not make any sense, but like I said, it’s just my own, personal theory.
I have basically confined myself to the house since about last Thursday. Not only do I not feel like getting out, I’m afraid to go anywhere. I did not go to work on Thursday and have not been back since. I have not been able to eat or drink much since that time either. Nothing I eat seems to stay with me very long. I’m running to the bathroom within 20 minutes – most of the time, sooner than that. I do have medication that has helped with the running to the bathroom, but doesn’t seem to help me eat. I’m not sure if the chemo pills have affected my stomach or what. As soon as I eat, you can hear my stomach gurgling and making all kinds of noises. The only way I can keep from feeling nauseous and losing what little I do eat or drink is to lie down on my side and be very, very still. The last two days, though, I have managed to get down some rice, scrambled egg, toast, and baked potato. I just have to keep everything very plain.
I have also had some other complicating issues. Unfortunately, with the kind of cancer that I have, it affects a part of your body that is not commonly discussed in polite conversation. However, if you’ve read Seth’s blog already, you know that I do have a fissure. I won’t go in to what it is (you are on the internet and can look it up ), but suffice it to say, it is extremely painful. I was able to get a special compound (to the tune of $80) that has made some improvements. It also is less painful if I just lie around. So, for now, I find that I can make it through the day and feel better if I stay in bed.
But, this round is almost over. I’m on the home stretch. I’m trying to stay positive, but it’s getting a little harder. I do find that I pray simple prayers like, “God please make this stop” or “Lord, please help me.” I’ve learned that’s ok. God is not interested in a long, theological dissertation. He doesn’t need it. He knows the whole while we can only see in part. He is still interested though in the condition of my heart.
I just finished reading a book called The Heavenly Man. It is an amazing account of God working through a Chinese man to establish house churches all over China. He endured MUCH persecution and physical torture. He actually suffered for the gospel. I, on the other hand, am just experiencing physical pain. I am NOT suffering while I lie in my comfy bed typing on my laptop and taking medications that are readily available to me. I fear we do not know what suffering is in America. We have too much and it is still never enough. I do not envy the torture this man experienced, but I do find myself envying the way God revealed himself to this man. For a long time this man did not even have a Bible and he prayed for years that God would give him one. God answered miraculously. When he received it, he immediately began memorizing huge portions of Scripture. We probably have at least 10 Bibles in this house and I am ashamed to say that I have very little Scripture memorized. I’m not on a guilt trip. I’m sad. I’m sad that I am so complacent and my life seems too full to read and memorize Scripture. Maybe I will still keep my prayers short and simple, but just add “Lord, please help me to desire only You.” It’s almost frightening to think what might happen when God answers that prayer. It might mean I will have to suffer.