Tuesday, April 29, 2008

On the Cancer Front...

I just realized this morning that I haven't given much information on the blog relating to my cancer lately. I guess that is good yet I do want to keep you informed.

For now I am going to lay it all out. Please know I am not complaining just listing details.

1. Labs drawn today for Thursday oncology appointment.

2. Doctors appointment is a follow up.

3. Start oral chemo (Temodar) Friday for 5 days on 23 off.

4. Rash on both sides of bellybutton due to chemo build up.

5. Some constipation. Early morning pain on lower left pelvic continues. OBgyn checked it out in February. No worries with ovaries. Must be from chemo induced constipation. Lovely.

6. Occasional forgetfulness due to surgery or chemo. Poor Dave has to do follow up.

7. Hair - What do I say? It's not how I would style it...yet this isn't about what I want. Is it? Ok. My hair is slowly thinning out - might be due to chemo or normal life stuff. It is also growing in slowly where the surgery took place in December. I have a good two inches that loves to stick up straight (spike) if not trained in the morning. Scary!

8. Physically & Emotionally- I am getting better since the trauma of post surgical complications (not much usage of left extremities) Ok NO usage of left extremities including the facial muscles. But, by God's grace I am somewhat back to normal. I was downtrodden for a while. Short story comprehension is difficult. I especially notice it with my Bible study. It is slowly getting better. Speech therapy aided in the comprehension. I currently see a counselor. I think everyone should see counselors. It is a broken sin filled world. I also think about not being here for my family in the years to come. The thought is short lived. Please pray that I do not dwell on the "what ifs".

9. Multi-tasking: is difficult but getting better. Cooking has been minimal. Many thanks to the meals still being provided occasionally. Driving skills have improved but, reversing out of a parking spot requires both sides of the brain. Difficult. Not impossible. I really have to focus. I also have noticed when multiple conversations are occuring while I am speaking to someone, I am overwhelmed. Thankfully Covenant Christian School's Field Day is not my respondsiblility this May. Allthough I did oversee the team shirt design and colors. That was fun and DO able. I missed organizing the event but, it was good for my health not to oversee the planning, games, volunteers, etc. Also good to let some things go. Laurie I am sure did a fantastic job. Can't wait for Friday, May 9. She is a blessing.

Thanks for caring...

Sunday, April 27, 2008

Sand in Suit & Trunks 08'

Carter's adventures
Cole looking for shells
Stuart looking onward
Yes, we just returned from our family vacation. Time away was good yet, I find myself "hitting the floor with my feet running" since we have returned. Lots to do on the homefront.

The beach was fantastic! Real Florida orange juice is truly liquid gold. We devoured a gallon and a half. The above pics are the fairly decent shots I was able to take one day. I would have taken a group picture if I had known the camera was going to be a problem. My camera unfortunately decided not to work later in the week. Bummer for the sunset pics.

This year my mom was able to join us. She needed a vacation. Not sure if it was a quiet one with all the boys. Ok- You and I know it wasn't quiet in the home. Yet, somehow the beach drowns out most noises with the waves and wind.

Carter had fun trying out the skim board. I have to say I would have busted my rear if I would attempt to skim. Dave tried it - fun to watch him. He couldn't skim as well as Carter and his excuse was the board was not long enough. Probably the case. Cole loved to boogy board. And little Stu just had fun "fishing" with the old reeds. The beach is one big sandbox. He also wanted to come back to "Stoo rts house" to ride his bike once we were into our 3rd day of 7. He just loves to ride his bike in our cul de sac. We recently put training wheels on the hand me down bike. He can't get enough bike time. He even rode today in the slow rain after nap time with me walking briskly beside him.

Not sure if I told you . . .I had some intermittent pain on the right side of my head prior to vacation and started back on some nerve pain meds (Lyrica). I think it was due to stress of grandpa's passing and packing for the family. Thankfully not much pain while away . I was able to enjoy Florida pain free! Just a little tired though (not complaining).
I will try to update some more on our trip as time permits. Be sure to look at this post in the near future for the updates.
Off to make dinner.
Just wanted to let you know where I have been.

Friday, April 18, 2008

happy birthday dave!

Happy Birthday

I awoke this morning around the 4:30 hour to the bed shaking. I thought it was one of the boys who were shaking the bed. (They've never have done that before so not sure why I thunked it.) Anyhooo...I immediately palmed Dave and woke him up asking him "What is going on?" Not sure what had happened we went downstairs after the rumbling. I checked on the garage thinking it could have done something weird. Turned on the TV. Nothing. Looked outside the sliding door. Nothing. We assumed it was an earthquake. Dave stated lets go back to bed. Back to bed?! How could I sleep after knowing an earthquake most likely occured?

Later it was told that a 5.2 earthquake did occur in southern Illinois. We felt it. I am sure we weren't the only ones. How about you?

Happy Birthday to my rumblin' kind of guy.
Off to purchase some delightful treats for the evening.

Wednesday, April 16, 2008

Remembering grandpa

Grandpa's memorial was sweet last Sunday. When his eulogy was given there were things about him that I didn't know. It was good to hear. The visitation was from 2-4 pm. The memorial service started around 4:15 and went till 5 ish. Afterwards an extended family dinner was given. Many thanks to my mom's church for providing the food. Also thank you to Aunt Lindas womens group for the yummy desserts. The buttermilk pie was too good. Cousin Corrie and I had our fill that's for sure.

Carter and Cole were told of grandpas passing Friday evening. Cole immediately cried to my surprise. Carter didn't outwardly express his feelings till later. This was a reverse of what I told you earlier. We are pleased that they are talking to us about the whole situation. Many questions are being asked. To the best of our ability we have answered them openly. It was hard for me after the memorial getting into the car to find the both of them crying profusely. They held it in during the four hour service without crying in front of others yet let it out in the car. I started to cry thinking of their feelings if I were the one who passed away. It was hard. As for Stuart he stayed at home with some friends of ours it was during his nap time and would prove to be too long of a day. It also would be hard to corral a three year old in a small funeral home room. That would of been on Dave's shoulders since I was saying hello to many people. On that front...Many people came that I hadn't seen since childhood. I knew for when they said "Katie" that was when people knew me from early years. I changed to Kate in junior high. It was good.

Busy in the home preparing for Dave's Friday birthday among other things.

Friday, April 11, 2008

Marion Lee

I received a call at 6:15 am from my mom letting me know that my grandpa passed away at 3:30 this morning in the hospital. His congestive heart failure caused his heart to just stop. I am sad. We will no longer hear those long time ago stories. That generation in our family is gone. Grandma passed away unexpectantly of a heart attack 5 years ago in April.

A memorial/visitation will be held Sunday from 2-5 pm in Washington, Missouri. He had already planned long ago to donate his body to SLU.

We decided to tell the older boys after school about great grandpa so they can process the information over the weekend with us.
Please pray they process his death well. Cole internalizes things. Carter wears his emotions on his sleeve. I am concerned about both.

I am just sad. Grandpa was like a father to me. He came home early from work to immobilize my arm after I broke it at his home on Purina Farms. I even cut wood with him in the back woods of the farm. I had a competition with him on who could carry the heaviest log to his truck. I have wonderful childhood memories. I am thankful I had so many years (into adulthood) with my grandparents. It is a blessing.

Today has been a day of rememberance. I look forward to digging into pictures for his Sundday memorial later.

Marion Lee Johnson was a grandpa who loved me. He will be missed.


Tuesday, April 08, 2008

Not Much

Good News. I am here to report that not much is going on. The retreat was enjoyable and fun/exhausting to get away. My side effects from this round of Temodar are minimal. Not much to report.

My grandpa is not doing well. He was admitted in the hospital yesterday. The cogestive heart failure is taking a toll on his body. Thank you for taking the time to pray.

Friday, April 04, 2008

What is love?

Love is patient, love is kind.
It does not envy, it does not boast, it is not proud.
It is not rude, it is not self-seeking, it is not easily angered,
it keeps no record of wrongs.
Love does not delight in evil but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.

1 Corinthians 13: 4-7

The above passage has been in my mind. I have been pondering what it means to truly love. I am not perfect. It is difficult to love like Christ but not impossible.

Today is the first of my chemo regimen. I think it is the 3rd series. My weekend retreat starts today as well.

Pondering this as well. http://youtube.com/watch?v=Oad8ov10AjY
I am lost without Jesus.

Gotta run errands & pack!

Tuesday, April 01, 2008

More Info.

Ok- Why didn't I just say that the MRI results were inconclusive like my mom explained to a friend of hers earlier? That would of been easier. Don't you think?

After todays visit with Dr. Needles and the unsettled word on the scan I contacted Dr Forget for his opinion and he was able to explain the inconclusive report.

Dr. Forget said not to worry as with any brain surgery like mine there is raw surface of brain that is exposed after the tumor area was taken out. Ok - the whole frontal anterior portion of my brain is gone! That is alot of exposure. He explained that the raw surface of brain is lined with a material called surgicel, a hemostatic agent (like an interior band-aid for my brain - my wording not his). The unexplained "cyst" is most likely a blood vessel, scar tissue or the surgicel material. While he was reviewing my scan Dr. Backer, a colleague asked him what he was looking at. Dr. Backer said that he thought it looked great. There's no tumor there. Dr. Forget said, "I couldn't be happier with the MRI. Now you have two neurosurgeon opinions."

All is well. To think I actually forgot I had an appointment earlier today. Yes, I actually forgot my follow up was for today. I even called my sister, Jean to confirm she was coming over to watch Stu. She said she didn't forget. Whew!

I will wait to hear from Dr. Needles as to what he wants to do from here. I will continue with my chemo regimen this Friday of 5 days on, 23 off. I have bloodwork on the 21st day of the cycle. Another MRI most likely will occur in about two months.

Looking forward to a womens retreat this weekend,

Mixed Review

Todays visit to Dr. Needles was somewhat hard to put into words. I am still trying to wrap my thoughts around it all. It wasn't a bad visit just confusing to me.

We discussed to a degree the results of yesterdays MRI. Dr. Needles wants to speak with Dr. Forget about the report. The wording of the scan report is not what Dr. Needles is comfortable with. It could be surgical healing scar tissue . Overall Dave said to me"not to worry about it as we know surgery is not an option".

I might take the time to write out the actual report later. For now, I am waiting on a call from either Forget or Needles as to where to go next. Another test?

If I could... I would write more. My typing is so slow. That is all I can come up with. I will need to write this down manually and look it over prior to coming to the computer to type. Gotta go and pick up the older boys at school. Carter could have a ball game tonight.

My WBC's count is a little low in but, not too concerning at this time.

I will continue with the 260mg of Temodar this Friday. Five days on 23 off.