Doctor Day

Well, doctor day came and went two weeks ago.  I am a little behind on my updates which is intentional on my part.  Again, I failed the lovely PFT tests.  Of course, I was a little frazzled and stuck in traffic before I attempted the test.  I can't say that resulted in my ugly scores.  However, we determined that I felt pretty good and I looked good so we would wait and see.  So, I set about trying to have some fun and living large until next time.

I had a really fun weekend with two of my darling nieces.  I am amazed how well they get along with my daughter and how long it is possible to play Polly Pockets.  We also managed to play at the waterpark, play mini golf, watch my husband's race, and take a trip to the zoo.  It reminds me that I need to plan a lot more fun in between the not so fun parts.  My youngest niece was worried that she didn't want to get me sick.  I think it is a sign that we might discuss my health a little too much when even the three year old is worried.

This brings up the complicated issue of germs and how to avoid them.  One of my very favorite people ended up in an ambulance last week with pneumonia.  It is not my gift to keep my distance and not really be able to help.  So, when another of my favorite people got sick with the junk this week, I again kept my distance.  Of course, my Grandma told me very directly to "stay away from him." 

I was also exposed to some germs that I wasn't aware of this week.  If you come to visit with germs that are not medicated, you should be advised that my husband really will make you leave.  He will be nice about it but firm.  So, please use common sense and stay home if you are sick.  My Pastor called me last night to cancel a meeting with me as she is on her third antibiotic and didn't want to risk it. 

So, we have one day of school left and then we are going to set out to have fun and stay as healthy as possible.  Our garden adventures could also use some love.  I think our house might possibly be overrun by the raspberry bushes.

Blessings,

Cindy

Sell, sell, sell

In the past few weeks, we have been busy wrapping up fun activities for the academic year.  We had dance recital last week and are officially back in "retirement".  My husband has started his racing season and is not in retirement. 

Last week, my daughter got a great package of magazines from her great aunt.  You can't imagine how excited one girl can get over mail.  Well, we might have mentioned it.  Mail is still one of the best ways to put your prayers into action.

We had some great news about the summer schedule.  My mom is going back to working four days a week in the summer which gives us a day to play with Grandma.  Most of the time, we schedule appointments around her schedule and have some extra help.  Either way, it was very exciting news!

In other news, we are heading to plant the garden with our friends in the morning.  In the afternoon, we will be helping my mom with her garage sale to raise money for the Cystic Fibrosis Foundation.  Her friends and some family donated "treasures" to be added to her own treasures.  My daughter gained even more sale experience working the cashier table last year with her lady friends at church.  Whenever someone made a sale, she would say really loudly, "Thanks for coming!"  Our experience was the same at the food shelf this week as we sorted food.  For some reason, people remember me but I think it is more about my assistant.  I am sending her to help Grandma again on Friday and see if she can help increase sales.

Blessings,

Cindy

Doctor Day

My daughter and I spent last Friday at the U.  She wore her pink tiara so we were easy to spot.  The PFTs went up slightly and my weight is stable although a little too light.  So, we made the decision to give it a go to be IV free.  I had to finish up what I had left which kept it going through Saturday.

On Sunday, I had to drop off my daughter and her friend at a Princess party.  When I got back home, the nurse was waiting to deaccess my port.  I guess it is actually ports since I have two.  I am officially free of sleeping with my IV pump and have no tubes.  Yesterday, I got to take my first shower without plastic on my arm.  Of course, we can always change our minds and hook it all back up.  However, I will take what I can get.

So, now it is back to fun exercise and lots of eating.  My daughter has big plans for me at the swimming pool.  We also have a garden to plant and are working on our list of more fun.  You know it has been a long run when your friends and family are just as excited to take a break.

Blessings,

Cindy

Read the Label

My restart of my IV was a little interesting since I got the two mixed up.  One used to be three times a day and the other twice a day before we switched to the 24 hour system.  So, I restarted at three times a day which was fine until I ran out of medicine.  When I called my home care team, they couldn't understand why I could be out of medicine.  Well, I failed to read the label and was only supposed to be taking it twice a day.  It might account for the weird symptoms and waking up a lot.  Of course, it took us a little bit to figure this all out.

When we switched to the right schedule, my drug level was still high in my system.  So, now we are down to one 24 hours a day and the other once a day.  It has been working pretty well except for a spell trying to access my port.  Apparently, it is better for me to lay down on the couch and not try to sit at the table.

I have also been trying to have a little fun.  My friend brought home a new baby a few weeks ago and I was planning to deliver her dinner.  Of course, I tend to plan a little too much in a short amount of time.  So, my aunt helped my daughter make dinner and gave me a chance to look a little more presentable.  Last week, she was back with my mom, my cousin and his family, and my sister and her cute girls.  One of my nieces loves to have dance parties in my basement and encouraged all of us to do the same.  It was really fun and it just isn't every day that you can get your relatives to dance to the Jackson Five.

This week, I have had some great last minute help from my mom, one of my friends who took my daughter to the library, and my other friend and her husband who make sure she feels right at home at their house.  Today, we are heading to the U and don't suspect to get done after a two week run.  However, it doesn't hurt to dream...

Blessings,

Cindy

Doctor Day

In the past few weeks, I have gotten a lot of fun deliveries. One included balloons which had already been blown up for my daughter. Another included an assortment of cookies, bars, and cakes individually wrapped and carrying a lot of calories. Another contained a thing to heat up and put on my neck. They are all really fun and have my daughter asking every day if she got any mail.

I have been busy making fun plans for when I get rid of my 24 hour IV. They include some dancing, some travel, a few freezer meal cooking sessions, a garage sale, a birthday celebration for my niece, interviews for a new Pastor, etc. I am really good at making plans. On Thursday, I went to visit my friend and told her, "Life is what happens when you are busy making plans."

Those words caught up to me on Doctor Day. I still have my 24 hour IV. It wouldn't be so bad except that I really thought it was going to be done. My nurse had been to visit in the morning and she thought it was going to be done too. My daughter went along to PFTs and did her best to cheer for me to blow harder. We literally shut down the clinic for the day. She asked the man cleaning the lobby not to lock us in here.

The new plan is to restart the second antibiotic that I was previously on and continue the 24 hour one. It starts the count over at a minimum of three weeks. Can I just say that swimsuit season is upon us? On our way home, my daughter and I stopped for some Chinese food. I think cream cheese puffs at least make things seem better.

Blessings,

Cindy

My new friend

My friend and her daughter spent the night so my daughter could go to the zoo yesterday while I was busy at my "meeting." It was a really great example of prayers in action. When I was trying to figure out how to drop her off early in the morning, my friend said, "We can just stay over."

My husband and I left for the U and my visit to my friends in Radiology. He waited and stayed with me until they were ready for me. We got to see the port that it is now in my arm. I had only seen a picture of it and was happy to find it was a little smaller than I thought it would be.

I did really well until they announced my name and procedure in the OR. Then, my friend, Fran, who was in charge of the good medicine made me go to sleep. Apparently, I can still respond and do what they tell me to do but I have no memory of it. Well, I have a little memory when it started to wear off.

It was supposed to take about an hour for my procedure and it took two. Of course, my friendly veins didn't cooperate very well. First, they took out my picc line. Then, they set out to put in a double port. (Most ports have one point of entry but I have two.) Well, that didn't work. I woke up when they were discussing whether or not to put in a single and calling another doctor. In the end, I woke up with a double but it is smaller than a regular one so I can't put dye in it for certain procedures. Other than that, I should be good to go.

My arm is very black and blue so I am keeping it covered. My daughter, of course, caught on because my clamp is a different color. I told her the other day that God made her perfect. She made a funny face and said, "God didn't make you perfect because look" as she pointed to my IV. Then, she added, "Don't worry. You're still beautiful." I guess it is all in your perspective.

I was hoping to be liberated of my 24 hour IV yesterday but it is going to keep going until I am seen in clinic next week.

When I got home, my dinner was waiting from my friends in the fridge. One of my other friends is cooking dinner tonight. I am very thankful for great help and lots of prayers. I am also really glad we can check my port off the list of new experiences and not have to worry about it anymore.

Blessings,

Cindy

Please don't be mad...

Please don't be mad was the subject line of my friend's email. She had arranged a few meals for me next week. In her email, she explained that she was telling me, not asking me. I thought it was really funny since I can't say that I have ever been mad at her. Apparently, there is this notion that I don't accept help very well.

This week, I was struggling to say no to something that I really want to do. When I told my friend about it, she replied, "You are not doing that." Of course, she is right. Although, I hate to admit it.

I was hoping to be liberated of my 24 hour pump today but we are going to keep it going a few more days and maybe stop it at the end of next week. I am going to get my port placed on Thursday so we can check that off the list of new experiences. My darling husband and friends have it all worked out. So, I just have to show up at the appropriate time. I confirmed the order for sedation so I can rest better now. One of the nurses didn't think that I needed sedation to which my doctor replied, "She needs sedation." Can I just say that I really appreciate him even when I really don't like his plans for me?

Today, I am thankful for my cleaning lady who came to visit today. I am also thankful for my friends who arranged a fun lunch outing and visit from the other side of town. I am thankful for all the cooks in my life and two weeks of spring break from Chinese school on Saturday to hang out with my husband and my daughter.

Blessings,

Cindy