Wednesday, February 23, 2011

One and a half steps in front of the devil

Today I went for my first post chemo regular follow up appointment. I will have many many many follow up appointments for the next 5 years. When I first found out I had chemo the second time I had just barely passed the 5 year mark and was down to very few follow up appointments. My new cancer diagnosis brought thoughts not only of chemo, but a new round of arranging follow up visits.

The doctor said I am doing good. We discussed the new follow up visit schedule, and I said while I had hoped I was done with those, they were better than the alternative. He agreed and said, "You are just barely one and a half steps in front of the devil. He has gotten a few good swipes at you, but so far you are ahead." We also talked about while there is snow on the ground now, my chemo and shot days were snow free. He also said Baby looked cute and very happy. The office staff fawned over her as well. I like the office staff because they don't make me decide three months in advance what will be a good day to come back. The receptionist will call me in 2 and a half months to schedule. When she does she will remember that I like to come in on middle days of the week, after my kids are in school and before they come home. All doctors should have receptionists like her.

I saw wild horses on the way home. There were some foals along with the older mustangs. It reminded me of the last page of Baby's book from my aunt about baby animals. The last page is about a foal and her mommy, and then it asks, "Do you like playing outside with your mommy?" Every time I read that book to Baby, L and C would say "You don't know, because you mommy does not like to play outside right now" to her. Despite the cold weather we have played outside recently, so Baby can answer that question now.

Camp Kesem

Last August, after I had Baby but before I found out I had cancer again, I saw this Deseret News article about Camp Kesem. It is a free camp for kids whose parents have or recently had cancer. I thought this would have been nice for C and L when I had cancer before. After checking to see if there were any camps in NV, I went to the website for Camp Kesem - BYU. On there website I saw they accepted campers from Utah, Colorado, and Idaho. In January before the Jan 11 chemo, I checked their website again, and saw they had an application to download online. I printed it out and my husband and I filled them out for L and C while I was having my chemo infusion. We put my aunt and my husband's sister as local contacts. We mailed them off, not really thinking we would hear anything once they saw they were from Nevada.

The Friday after my last chemo we got an email from Camp Kesem - BYU saying they had received our applications and would let us know in a month or so if L and C were accepted as campers. I was so thankful they did not reject the applications right away, and that the email looked like a form email they might send to any applicant.

So we have hope they might be able to go to Camp Kesem. We are building on that hope with prayer.

(Mom click on the blue letters to link to Deseret News article and Camp Kesem-BYU website)

(I love that it looks like they reenact a handcart journey at camp)

Sunday, February 20, 2011

Random Love Week Bits

We celebrated Valentine's Day over many days this week. L made cute cards for everyone. I asked C if he needed help with his cards/presents and he said, "No, I decided to give everyone hugs this year for Valentine's Day." This was a perfect present for him to give because he is an affectionate little boy. My mom helped L and C get their cards for their class ready before she left. The treat they brought to their class was those Rice Krispy treats you buy at the store that you can write on. They wrote messages of love on them, and passed them out. Baby let us hold her and love her on Valentine's Day. It was the best gift.

My neighbor brought us a heart pizza for Valentine's Day. Actually she brought us meals a few times this week, because she knew the grandmas were gone. She's been great, she often calls on her way to the store to see if I need anything. She was the first one to call when our fence fell down, offering to help.

L and her friend gave a very special Valentine to one of her teachers by singing, "The Song That Never Ends." She has been so very helpful this week. She offers before I even think of asking to change Baby's diaper, or make her a bottle. Last time I had chemo I would joke that she was my secretary, because she remembered everything that I did not. Now she is the top notch executive assistant, anticipating needs ahead of time.

Today Baby wore a pink corduroy jumper to church. After church when C was trying to wrestle her into the high chair, he said, "She reminds me of some older ladies at church who wear corduroy jumpers but are still active."

Wednesday, February 16, 2011

It was so windy....

On Monday we had "The Carpool Meeting." I had been putting off this meeting until chemo was over. I did not want the grandmas to have to deal with a different and more challenging carpool schedule. This new schedule involves 8 schoolkids, 6 younger siblings, 5 moms (one who is pregnant and will just send her daughter soon) and 3 times a day (morning, kindergarten, afternoon). My main carpool person and I expanded to include my new neighbor, and the rest of the kindergarten carpool.

It has been very windy here. When I did carpool Monday afternoon we did many variations of it was so windy.... the fence fell down, the gate blew off, recess was canceled, the trash cans raced down the street, the person cleaning out their garage just let things go, the garage door would not close due to the tumbling tumbleweeds, the shopping carts ran away at the grocery store, a truck was moved by the wind while the owner was in the store, the sandstorm in the morning greatly reduced visibility on the highway, the car was sandblasted, L's eyes started watering even though she was inside, sand and leaves were tracked far into the school, the doors either opened themselves or slammed shut, and on and on.

Transition Time

My mom left on Friday. She celebrated her birthday here. Last year on her birthday we told her we were expecting Baby. This year we got her a Hello Kitty cake pan. My dad drove up and picked her up and all the stuff we sent with her, piano books for my niece, Scout shirt for my brother-in-law and so on.

I really thought I would not be so tired the second week she was here. I had visions of getting all these things done. We did go through Baby's clothes, which I had been putting off. We did what we needed to get done.

We survived the weekend, and church even. The Sunday compassion award this week goes to the nice recently married couple in our ward. I was holding Baby in the back by them, when she decided to leave a little bit of herself in that spot. After Baby spit up all over the floor the husband got wet paper towels, and cleaned up the floor, while the wife entertained Baby. The talks were on reverence, and they showed it was more than just quietly sitting. They were not the only ones helping our little family navigate church. Kind people always help carry my bags, or the baby, make copies for me or get stuff from the library, and lots of other little things. I would be hard pressed to think of someone in our ward who has not helped us in some way.

My hair started falling out for the last time on Tuesday. When it grows back this time it can keep growing.

The worry bucket is not getting very many papers in it.

Baby is expanding her repertoire of food and developmental milestones.

Slowly but surely we are leaving chemo behind.

Monday, February 7, 2011

DJ Jeni

So we did dance and then we danced again. When I had cancer the last time, I was solely in charge of the music. L and C just went along with whatever I music I played. This time they had more of an opinion of what we should listen too. Of course they also had an opinion of what Baby wanted to dance to as well. We listened to more Taylor Swift, and Taio Cruz than I might have chosen.

In other news Baby cut her first tooth. It was not that bad, but maybe that was because I had chemo that week, and did not deal with it that much. My mom got the brunt of Baby's fussiness.

Friday, February 4, 2011

Everyday I Like To Feel The Sunshine

I woke up this morning sick and exhausted. Luckily my mom is still here and got the kids off to school. C even took the present he was supposed to. He has been having the roughest time this week I think. We were talking about chemo being done, and he said, "You are not done being sick, and you still have reconstruction surgery. " He is hesitant about celebrating. L is just glad she can focus on partying and not on her numerous school projects. Baby has both grandmas wrapped around her finger. She is a party wherever she goes. Then of course her adoring mother will play with her, hold her, and try to feed her, no matter how bad she feels. Then when the kids come home it is just two more people to keep her entertained. We would not want it any other way.

It is amazing how knowing I will not be doing this again in three weeks makes me feel physically better. I was thinking back to this time, when I had cancer before. My last chemo in 2005 was on a Wednesday, because L started kindergarten that Tuesday. It was kindness on the doctor's part so I could spend that day focusing on her. My dance day that week was Saturday. I excitedly called my parents to share in the jubilation. They were not at home, and I had to reach them on my Dad's cell. My parents and many other family members were at the hospital with my grandpa. He died soon after. We were unable to see him before he died, but did have a chance to mourn with our family at the funeral.

This week is different. This week is feeling the sunshine.

Thursday, February 3, 2011

The final shot

I woke up Wednesday morning with a list and an internal countdown. I knew I had only so long until I crashed. Before we went to get the shot I tried to write a family newsletter article, but when I hit submit it was all erased. So I just left instead.

The nurse was kind as always. She also let me know that I could go there (a half hour away, instead of an hour away) to get my port flushed until they took it out. The shot they give me always goes into the upper back of my left arm. I realized no one had ever gone in with me for the shot, because I did not want to burden them.

I slept when we got home, after a quick stop at the library for my mom. The kids came home with varying amounts of home and make up work to finish before piano lessons. C also brought home a teddy bear for Baby from his teacher. That day during sharing he had presented his Hope Bear that he and L received. When his teacher found out Baby had not gotten one she instantly wanted to provide one for her.

That night we saw the family newsletter had been put up, and I guess what I was supposed to contribute this month went through another messenger.

The Last Tuesday

We were rushing around that morning. My mom was going to take the kids Easter clothes shopping and to the museum while I went to chemo. I forgot to put my numbing cream on my port until we were too far away from home. I had them stick me before without cream, and I just wanted to get started and get it over with.

The whole group came with me into the waiting room. Then I went back to have all my vitals checked, and they went on their merry way into the city. The nurse went to access my port and I told her I had forgotten my cream that morning. She dismissed my tough it out plan and got some numbing spray that worked nicely.

The chemo room was not busy. I had my usual hours worth of premedication before chemo. Then they started the chemo, and I had an adverse reaction. As I struggled to breathe, they came and turned the chemo off. That helped immensely with my breathing problem, not so much help with my want to finish and get out of there problem. After awhile they came and turned it back on at a slow and low dose. This was more tolerable. Then I had to discuss with the nurse how this reaction has compared to my other reactions, like the one I had during the first chemo this time around. After that conversation she told me that if I felt low back pain to let her know as well. I told her since I had been sitting for hours with only an occasional break that I had low back pain. In addition, I broke my back years ago, and have had low back pain since then. I really do not know how I could tell if it was due to the chemo, the long sitting, or the old injury. She tried to explain more, but it just sounded like how my back always feels after sitting for a long time.

Finally I finished. They raised the roof and congratulated me. I called my mom, and then we stopped at Wal-Mart on the way home to get a few more things for the kids. We bought some celebratory pizza and then did the final chemo boxes with the kids. Then I went to YW where I found that hot flashes are an effective heat source when you are heart attacking someone on a cold winter night.

Later I was talking to my husband about the adverse reaction, and he said, "I think you need to not have chemo anymore." Not surprisingly I feel that way too.

Monday Musings A Few Days Late

On Sunday we instituted the Worry Bucket. L and C decorated an small old Easter bucket, and I put a pencil and small pieces of paper by it. I told them they could write whatever they wanted. So all day they did. That night we went through them. Some were directed at each other, C writing about something he did not want L to do, but others were deeper.

After number 3 chemo, my mother-in-law accidentally took home the extra keys we have for the grandmas to use. I told my husband about it and after I was done he wondered what else had happened to her. I told him she was fine and would send the keys back soon. He explained he expected much more to have occurred, and went through a few scenarios.

Thinking about the items in the Worry Bucket, the discussion with my husband, and other comments my kids have made, I realized we just expect everything to be catastrophic. I guess going to the doctor with a hopefully clogged milk duct and coming home with breast cancer will do that to a family.

I remember last time I had cancer and it seemed like the stream of bad news would not stop. This time though, while their certainly has been awful news, there have been really hopeful things too. Of course living with Baby is a big part of this. She is a ray of hope everyday. Plus some of my cousins are getting married. While I probably will not be able to attend their weddings it is fun to see their preparations from afar. In addition, it reminds me of the exciting time when the cousins close to my age and I got married. Luckily I am still somewhat close to those cousins and can witness the miracles in their lives too.

Winter has brutal for many people I know, with record snow, but here it was sunny every time I had to go to chemo or the shot the next day. It has been cold occasionally, but a relatively mild winter. I was worried about not only my husband or I driving up to the doctor, but also the non snow driving grandmas. The lack of bad weather was beyond me. I was just hoping the weather would not be too bad for too long.