Friday, December 30, 2011

A Non-Chemo Christmas

We had an enjoyable time on Christmas Eve eating and watching our kids do the nativity play together with friends. I forgot to get out the strawberries. I am allergic to them and can't have them anyway, but I wanted others to enjoy them. Christmas was lovely, going to church, taking the sacrament(the point of my YW Christmas lesson) and seeing people we love, but don't usually see on Christmas. Then taking a nap with Baby in the afternoon. Actually I did that(nap with Baby) on Christmas Eve too, maybe that is why I forgot the strawberries.

I could not believe the difference not being super tired and sick can make in the enjoyment of a major holiday.


An extra fun thing this year has been the Christmas cards, letters, and presents we have gotten after the holiday as well.

Second Expansion

I went on December 23 for my second expansion appointment. I brought with me a present for the doctor and nurse; rice bags. L was making rice hand warmers so I made some large rice bags as well instead of wheat bags. My doctor and nurse gladly received them, asking again what the directions were for heating them up, telling me about their numerous aches and pains (they are both older than me), showed them to others in the office and then having me wait while they hid them in their offices. Then they injected the saline and asked me how it felt. I said it felt like a rice bag on my chest, and they laughed, because now they understood what that meant.


Before they started the procedure, my cell phone rang, and because I was high off the ground reclining, half dressed, the nurse picked my purse up and offered my cell phone to me. I told her I was sorry it rang, I forgot to turn it off, and I did not think I needed to answer it right then. She said it was no problem and I could answer it or call them back if I wanted I so desired. She worried it might be an emergency with my kids. I said I would be sure to call back as soon as we were done and I was able to help. Then we discussed our Christmas plans.

There was very little pain this time. Just some skin stretching the day of the procedure. Overall it was a fairly pleasant experience.

The rice bag experience reminded me of the original wheat bag I obtained. My cousin made it for me at a Homemaking/Enrichment meeting at BYU that I did not attend. In fact I cannot think of any Enrichment meetings I attended while at school. The planners of those meetings I am sure did not think that many years later I would be using the same idea to make something for my breast reconstruction doctor and nurse. They really had no idea of their impact.

Monday, December 19, 2011

Cancer Country Songs

L and I were talking about some depressing Christmas songs. That reminded me of all the country songs about cancer. I am sure there are more, these are just the ones I could think of off the top of my head.





First Expansion

How I was feeling - Very anxious. I brought extra strength Tylenol with me
How Baby was feeling - Super excited to watched by a friend with a dog, two kids, and new toys. She did not want to go home with me. She was ready to stay and play all day.
My husband, and L&C - Hoping it would not be too painful so we could go to the play that night.

What I thought the pain would be like - Very bad, yet I still willing went there. Further proof that I am crazy!
Actual Pain - Not bad that day. We did go the play, and I did not use any pain medication. When I woke up the next day, I was hurting. I took some extra strength Tylenol that did not touch the pain. So I had my husband come in from working outside early and I took some Aleve. The two together took the edge off enough that I stayed with that combination for the next 24 hours.

Unexpected compliment from the nurse - She thinks I am a very young (she knows my real age), but good mom.
Lost in translation - The doctor asked me how I was feeling after he inserted some saline in. I said it felt like a wheat bag on my chest. Neither he nor the nurse had ever heard of wheat bag, and could not understand why I would use one. I am not sure my explanation helped much.
Clarification from the doctor - He told me he had expected the reconstruction surgery to be very painful, because of the strength of my chest muscles. Often the more tone and strong they are, the more it hurts. Strength causes pain - what! My young age and carrying around a child who progressively got bigger caused different muscle tone than if I was really 54.

Future Plans - We can do this again. Knowing what to expect will make it a little easier too.

Thursday, December 8, 2011

When I get older, I will be stronger

Of course if I am tired, that means we have DJ Jeni time more often. We like this version of the 2010 World Cup song.



Chorus
When I get older, I will be stronger
They'll call me freedom, just like a waving flag

Every Little Bit

Usually our holiday season is fairly fast paced. This year, like last year, is slower. I slow things down. We only do what we feel we can't live without doing. L and C put up the Christmas tree, but most of the other holiday decorations are staying in the box. I was not sure if we would do holiday goodies, but my in-laws left all these juicy persimmons who were calling to me to make persimmon bread. I have never made persimmon bread, but it sounded delectable.

I had too many mornings waking up tired and sore. To help alleviate that we moved Baby back to our room. We all sleep better now. Having her closer makes it easier to respond to her more effectively at night. For example, now we do not have to stumble across the house to see that by the time we get to her she has gone back to sleep. Everyone is still very accepting of my
non-energetic state.

I can tell that I am doing the opposite of wearing down, I am wearing up. Maybe not as much as I thought, because I cannot think of the opposite phrase of wearing down. My husband told me there is scientific proof for chemo brain now. I think the first two sentences of this paragraph are scientific proof.

Last year we had a wonderful scriptural/musical Advent calendar, but the papers were much too big for the drawers. This year I had enough energy to reformat the slips of paper much smaller. So a tiny improvement over last year.

Monday, November 28, 2011

Thanksgiving

In the morning we made a list of all the things we needed to do to prepare. My kids energetically attacked the list. I was still going slow, and Baby even helped. My husband and his mom steadily worked on as well. Then I looked out the window and there was a little girl looking in, my niece. The cousins and Grandpa were here. I don't think my father-in-law will let us borrow his wife again for a long time. Otherwise we had an wonderful time enjoying the meal and the company.

That night we had some good friends over to help us eat the pies. I was glad to see my in-laws and my friends meshing together well. Grandma read books to their youngest, the kids all played together, and so on.

The cousins stayed a little longer on Friday and played, while my husband and his brother worked on digging up some fence posts. It was pleasant. I knew I could not worry too much about how it would turn out, or my talk, or my lesson, because I was too tired to begin with. I just went with the flow and did what I could and knew those around me understood.

It Takes Time

On Monday I drove and picked the kids up. It seemed as if all the cars were going way too fast. My stomach hurt all day and that night I got sick. I was sick all night long, not comfortable sleeping, and the pain killers left with everything else. On Tuesday I was sick and could not hold anything down. It was miserable, everything hurt. Eventually I realized that it would end, I needed to just wait it out. I thought about all the people/things I was thankful for, I thought about my YW lesson for Sunday(Preparing for Change), I thought about my talk for Sunday (Be humble and follow Christ), and I thought about the people I was thankful for again.

Grandma had to do more that day, and she stepped up to the plate and hit a grand slam. The next day I was feeling better so we started preparing for Thanksgiving with pie and roll making. My husband took me to the doctor that day. He said things were healing up nicely and my husband made sure he knew about me being sick.

Finally he said I could try to pick up Baby. A week early! I did and it hurt some, but not too bad. I tried to be careful and not overdo it, especially while we still had live in help. It was sublime to pick up Baby when she cried.

Recover Quickly

On Monday morning there was a big difference from Sunday. I woke up and felt like I had healed during the night. I was still tired and sore, but it was a significant difference.

I felt so good I went to the YW activity on Tuesday. Their moms and one of my friends was there also to help the girls continue on in their skirt project. Mainly I just got to soak in their good cheer. The moms have been excellent at helping out, even though I know they are super busy in their own lives.

Wednesday we went to the doctor to get my drains out. Baby fell asleep on the way into town and so Grandma stayed in the car while I went in. The doctor had emergency surgery that morning and was backed up. The waiting room was packed with mostly patient people. The only anxious ones were an older couple. They thought they were whispering to each other as they commented negatively about the receptionist(she would like us to leave wouldn't she, but no we are staying and waiting)the other patients (what did she say, who cares) and healthcare in general (there wouldn't be an emergency if there were more doctors). I waited and then called to tell Grandma it would still be awhile. Baby kept sleeping. Eventually I got back and they pulled the drains out. I was surprised at how small they were. Much smaller than the ones from the mastectomy. Baby slept all the way back home and woke up as we pulled into the garage.

upenn.edu

I was doing well, but that day I realized that there was no way we were leaving home for Thanksgiving. Plus the doctor still banned the lifting of Baby. Gratefully Rex's family was flexible enough to say that if we could not come to Thanksgiving they would come to us. So we started planning.

Then we had an awful windstorm, and half our fence fell down. Sections from each side hurled through our yard as we watched in amazement from the house. That was also the day of the awful fire in Reno, so we were just glad the hurling pieces of fence were not on fire. Our neighbors checked on us. The wind calmed just enough for Grandma to pick the kids up without driving through the wall of blasting sand. Though it took her, L, and C to get the garage door closed.

Saturday we cleaned to house and my husband surveyed the fence damage. Sunday I actually drove to church. My mother-in-law went with me to the special R.S. were they passed out to us our copies of Daughters in My Kingdom. I felt like I could see the end of the pain.

Monday, November 21, 2011

The Next Grandma

My mother-in-law came out the night of the Primary Program. We all rejoiced at seeing her. The next morning my husband tried to take care me, Baby, and get himself ready for work, because he did not want to bother his mom.

During the day we talked and his mom graciously agreed to take over more Baby care and help her when she wakes up. She also began the round of carpool with L's changing daily pick up time, and cleaning, and cooking, and letting me rest. I'm sure my father-in-law misses her good care.

Both grandmas were careful and kind about Baby and I. They would pick her up and setting her by me on the couch so I could at least be by her.

I know I am really blessed to be able to have both grandmas come help us out. I feel like I have a good relationship with both of them and enjoy their company.

Primary Program

At one time I had said I did not see the need to wear drains to church. If I was that close to having had surgery where they put drains in I would just stay home.

That was before the Primary Program. It was L's last year. She had a talk, and played the piano for the Activity Day Girls song, "I Love to See the Temple." C also had a talk.

So I found some baggy church clothes to fit over the drains and bandages. I took some pain killers, my husband did not go to any meetings, we came in late, and sat in the back. It was a wonderful program of course.

L gave an excellent talk and then walked over to the piano to play for the next song. C was last of his class to talk, and ended up helping his friend right before them with the big words in his part.

I was glad to be there and see them, but also glad when we went home.

Thursday, November 17, 2011

Friday Follow Up

The day after we got home I had a follow up doctor appointment, the kids had off from school and my mom flew home. The doctor said everything looked great. My mom caught her flight, and we were sad. My husband wrangled the kids. Baby did not understand why I did not pick her up, but let my husband carry her around instead.

My mom had cleaned the house before she left, so my husband and the kids just had a few groceries to pick up. I fitfully slept basically sitting up as the rest of the day swirled around.

Two main things helped during this time. The first was the 5k that I did with my friend strengthened my legs. As an unanticipated blessing my strong legs helped me do things that I had been relying on my arms/hands to do. I did not realize how much they could do. My legs were under utilized. Yay for our amazing bodies!

Second of course was my family, but especially my husband. He keeps me on track with the medicine, helped with the drains, and just so much else. L and C also uncomplaining helpers. Baby did her best to keep me entertained.

More Hosptial Fun

I stayed that night and the next one too. Meanwhile back at the ranch/home Baby was banging on our bedroom door saying "Mommy, Mommy" convinced she could make me come out. Also Baby was sleeping through the night. The same could not be said for those of us at the hospital.

The doctor told me the morphine reduces your desire to breathe. This stuck in my morphine addled brain. It made me think of things in my life now and in the past that I have let reduce my "desire to breathe" or constrain my life. Of course in the hospital they monitor you and when your oxygen gets too low for too long they hook you up with more. I know that the oxygen in my life is love. The same love that brings my mom up to comfort Baby, L, and C while we are gone. The love that made wish we could get home sooner than we did, and put my kids in most of my hallucinations. The love that I feel from my Heavenly Father as my husband reads scriptures by the bedside in the hospital.

We met a variety of nurses. We talked about different things, my kids, other ways of reconstruction, how dedicated my husband was, whether I would like to get up and walk and if I actually could. I threw up a variety of times, no matter what the medicine was. I thought it was funny when the nurse would ask if I had had this or that chemo nausea reducing medicine before. Of course I have, and I threw up anyway.

Eventually I kept things down, did not faint when I walked and got a handle on the pain. Then we got to go home.

Monday, November 14, 2011

The Actual Surgery Day - Breast Reconstruction - November 8

My Husband took me to the surgery center. We had a wonderful pre-operation nurse who only needed one try to put an iv in my small hidden veins. I am so thankful for that and all nurse who are one stick and done nurses. The anesthesiologist was not my favorite personality type, but he was adequate. My surgeon came in beforehand and went through one more time what the process would entail - the initial surgery to place the expanders behind the muscle and skin, the weekly visits to fill the expanders slowly to stretch the skin and muscle, the settling of the expanders, and the final replacement of the expanders. He also was planning on using AlloDerm (regenerative tissue matrix) on the right side where the skin had been radiated to strengthen it.

I went home the night I had the mastectomy, but this surgeon said he thought I would stay at least one night. I admit I thought I would only be staying the night because he wanted me to.


There is song that I learned about in Musical Appreciation at BYU that sort of explains how I felt when I woke up from surgery.



The surgeon came in when I woke up told me it went better than expected, he did not even need to use the AlloDerm, and everything looked great. He then explained the pain medication options I had. I was surprised to have oxygen tubes in my nose, that the oxygen pulse rate machine kept beeping, the amount of pain I was in, and the rapid number of hallucinations (My husband was my reality check meter - No, Jeni the doctor did not just come in put his knee on my husband's chest and use pliers to pull one of his teeth out). There was no way I was going home that night.

Party With Mom

While my mom was up here, and I was waiting we took advantage of the opportunity to spend some non-bad health related time together. I had Baby and then cancer again so fast, even when I went to visit Utah I was sick. I spend way too much time with relatives while at my worst, and not near enough at my best, or even just regular.

We went Christmas shopping, to the youth activity, watched the "Sing Off" on Hulu, and talked, watched me fight with the kids, and so on. Somewhere in there I hope my mom enjoyed herself. I know that all this extra time helped Baby trust my mom.

Then after a harrowing night we found out that Baby had croup and an ear infection. That Sunday I stayed home with her, and my mom got to see L and C practice their Primary Program. Not only that, but she got to hold another even smaller baby(the Primary Secretary's) as well while watching it. In the practice C did his part and several others. L played "I Love to See the Temple" for the Activity Day girl choir, and did her part.

By that Sunday I had seen the doctor again who gave me the full steam ahead for surgery on Tuesday the 8th. My mom's flight was for November 11, and so my husband arranged for reinforcements with his mom. I know I have the extraordinary gift of two grandmas who get along with the two adults who live here and are available to help the children.

Sunday, November 13, 2011

Last Pre-Op Appointment

My mom went with me to the last pre-op appointment before reconstruction. It was after all the carpool, parent teacher conference, wind current demonstration for C, YW, Baby watching by my mom and mother-in-law, my husband's job, the before surgery blessing scheduled, the Wicked Good 5k had been run and all other arrangements had been made. Emotionally, and as far as I could prepare physically, I was so ready to have surgery the next day.

The doctor came in and said I was not ready. The port incision/burn had not healed to the point that the doctor felt comfortable making more cuts in my chest, and I was allergic to Neosporin.

He asked if there were any changes I needed to make in my arrangements. The same doctor who told me I would probably be unable to lift Baby for three weeks was wondering about the arrangements I had made.

Meanwhile my mom thought things were taking awhile, but seemed to be going okay as everyone was saying my name and rushing around.

In the end calls were made, arrangements were changed, and of course all the physical things were much easier to adjust than the emotional toll. My mom opted to stay up with us until Friday, because I had another appointment that day to see if the following Tuesday would be feasible for surgery.

The next few days were a whirlwind of walking with my mom and trying to do everything possible to not remember that I was not recovering from surgery, that I did not know when I would have surgery, and I was once again I wondering "how can this be?"

Wicked Good 5K

My wonderful friend, A, and I have been training to run a 5K of our own design. I wanted to be in the best shape possible to recover easier from the reconstruction surgery. She was running for the first time in years. Her emotional support was invaluable to keep me going. My cousin, who is fantastic runner, said she would hold down the Utah division of the run.

On Halloween morning, my mom watched the kids, as we went to the course. It was a beautiful cool sunny day. There was a herd of wild horses eating breakfast just off the course. I felt good running. I thought about how far I physically I come since chemo, and the so many many things I was thankful for. Before I knew it we had finished the course.

Yay for wonderful friends who help you do good things!

The Grandparents Arrive

My breast reconstruction was planned for November 1. My parents came up for Nevada Weekend, enjoyed the local trunk or treat. We had a special surprise as my family spoke in church that Sunday. Well L, C, my husband, and I did while my dad followed Baby around the church. My dad went home. My mom stayed and went trick or treating in our neighborhood. I think she was surprised at the handfuls of candy you can get if you are the only kids who trick or treat in that neighborhood. L helped my mom figure out her phone, while Baby randomly called too many people with the same phone. My mom does text now.

Removal of Port


courtesy uwhealth.org


So I was planning on having breast reconstruction. As part of the planning I thought it would be nice if they removed my port at the same time. The two surgeons involved were not as enthusiastic about the idea. The port removal was first.

The wonderful thing about having your port removed is your oncologist signs off on it first. It means he thought I would not need my port in the foreseeable future, or I was done with treatments this time around. I made an appointment to have it done, and I asked them if I could drive myself home afterwards. They said I could, and I did. My Husband watched Baby during the procedure, and I spent the rest the day trying to keep her curious hands from ripping the gauze off and hitting it.

A few interesting things about the port removal.

First is the nurse at this surgeon's office who helped with the removal highlights as a photographer. She took the fall baseball pictures in our town. I forgot how I knew her as both parts of my life collided at the field the day she took C's picture. She reminded me and knows that I have chemo brain so it was not as awkward as it sounds. She did a good job on the pictures.

Second, I view the port removal as the beginning of the time where my body said enough is enough. The needles seemed to hurt more, the doctor was surprised at the thumping in my chest I could feel (and took action to stop it), I had a harder time relaxing, the numbing agent did not work as well and had to be reapplied.

Third, I remembered too late that I was allergic to the adhesive they used for the steri strips. I called them the next day, but I was already burned in the incision area and had gone through intense itching. After I called them, I called the breast reconstruction surgeon and told them so I would not have to go through that again.

I was more relieved than I expected that I was past the port time of my life.

Sunday, November 6, 2011

Follow Up With Oncologist

I had a follow up appointment with my oncologist recently and it went well. I am comparatively healthy.

The week before was crazy time at our house though. The anxiety builds as I get closer to the appointment, so I can barely sit still. On the upside I get a so much accomplished, freezer meals, house is clean, projects completed, help my kids with every little thing. On the downside I do not enjoy the clean house or the meals. I just hug my kids and tell them how much I love them over and over again.

Follow up doctor appointments confuse my kids. C constantly tells people I have had cancer three times. They thought since I was going to the doctor the cancer came back, or I was going to have surgery, or that I was having problems with my hand and arm again, or any variation they can think up. We usually only go to the doctor when we are sick, so follow up appointments do not make much sense to them.

Chronic Illness

I was reading an article in Parents magazine about parents and chronic illness, and I was surprised to see they consider cancer a chronic illness. The article states:

Because of treatment breakthroughs and the likelihood of recurrences, cancer is also often considered a chronic illness, not just a terminal one. Even on the days and weeks that these parents are symptom-free, they live with the threat of flare-ups, as well as the worry of how they will care for their children when their lives are interrupted by the demands of their illness.

The magazine even profiles a woman who is in remission.

I had not ever considered myself having a chronic illness. Then recently my husband and I had blood work done for our individual prevention plans for a health insurance deduction. Once again the prevention plan made recommendations based on the belief that I have a chronic illness.

Most of the time I think of someone with MS as a person with a chronic illness, and not myself. This morning, as I did wound care for my port removal incision, took an antibiotic for a cancer treatment related complication, and put my compression sleeve and glove on after a painful swollen night, I thought I certainly do many more health related things now than I ever did before. Not quite chronic illness level, but beyond what is a normal healthy level is for me, maybe chronic illness lite.

Wednesday, August 31, 2011

Intensive Phase

I had about a month of the intensive phase of dealing with lymphedema therapist appointments.
I continued doing my arm exercises and then went in for massage appointments. She also taught me self massage. The self massage was to "pull fluid away from the affected area into unaffected areas to create collateral lymphatic pathways across watershed to normal function lymph nodes." Doing this massage I could sometimes feel the water traveling up my arm. The first time I wore the glove home I felt so much water going up my arm it was unnerving.

The creating new pathways part is exciting to me. I thought I was just stuck managing the damaged lymphatic system that I had. Bodies are amazing, not surprising considering Who made them.

After the intensive phase I moved into the maintenance phase. My arm still swells sometimes, but I know how to get it back down. I am also working on helping it swell less often.


Camp Kesem BYU 2011

So my kids loved Camp Kesem! After watching these videos it is not surprising. It was humbling to see them so relaxed and happy. They also made friends that they have kept in contact with. It was hard for me to drop them off and drive away. Luckily I had Baby to take care of. She helped me out by getting sick the week her siblings were gone to help keep my mind occupied.

The counselors were great, they even took extra time to talk to us, because we were new camper parents. The activities were super fun according to L and C.






So Many Choices

My husband and I talked about what color or type of sleeve I would pick out, maybe a pink one, or perhaps a nice pattern. We thought our choices would be like the ones at this website - Lympedivas


Instead the rehabilitation therapist was glad my arm was a regular size and could fit me one off the shelf. It was the ever popular Jobst.

He told me to wash it in baby shampoo which I already have of course for Baby. Then he showed me how to put it on. There are special things to use or ways to put it on, but I found it easy to do and so did not bother with anything else.

He took measurements of my hand and fingers for the glove. This therapist reiterated what the other therapist said which is that it easier to fit a compression on an arm that is close in size to what you want it to be.

I found both to be sweaty in my active lifestyle and took the glove off several times a day to change diapers, and other baby care activities. L and C asked why I did not just wear Under Armour. C even tried to let him wear it, telling me he was too cold and needed my sleeve. That just amazed me. Baby would rub her hands on it, and sometimes put them under the edge of the sleeve and grab it like a blanket.

Another aspect that I did not expect in wearing the compression garments is how often I shared information about them. There are many, many people who put off going to the doctor and just live with the swelling they have, due to money constraints, lack of insurance and so on. I ended telling people some online places, what brand I had, the amount of compression I used (20-30) as opposed to the other types of compression, and let them feel the fabric of the sleeve.

Thursday, August 4, 2011

Lyphedema Therapist Appointment

I was anxious about seeing the lyphedema therapist (a physical therapist with training in lyphedema). My arm and hand swelled up months ago and I was able to reduce most the swelling myself. One of my neighbors gave me some information she had received about lyphedema that was very helpful. I doubted anyone really noticed my swollen arm, because I took the rings off that hand and wore loose shirts. In addition, my arm got bigger the same time my hair came back, and so hair was the focus.

Then when the therapist office called, I asked how long was the first appointment and how long were the follow ups. The receptionist said follow ups were usually three times a week. More medical appointments are not what I was looking for.

I kept thinking about canceling the appointment, but my husband took the day off work so I went anyway. It was at the wound care center, so everyone else was older and in much worse health than I am.

The questions were fun like, "Do you have fungus on your arm?" Well no, I do not and now I know that if I did I could get help for it here. Based on my lack of fungus among other things (I exercise, I do not smoke or drink alcohol, I have a good support system, I do not need a caregiver - I am the caregiver, I have the lotion they recommend already because Baby has eczema, my health problems are limited mainly to cancer, I drink lots of water) my therapist put my prognosis as good.

At the first appointment after going through and extended game of twenty questions (answer was - yes you will be able to put your rings on again), she taught me some lymphatic decongestive exercises, and referred me to the rehab specialist for some compression garments. Often you would use bandages first to get the swelling down more, before using compression, but I had gotten it down enough before I went to the doctor.

She also talked to me about the lymphatic system, its history, and what I needed to do during the intensive phase of therapy. She stressed a few time not to get mosquito bites in my right arm. So after the appointment I met the rest of my family and we went a on a hike in the mountains and the next day I drove young women up to girls' camp. I got mosquito bites everywhere else, but I kept them off my arm.

For the at home exercises I could choose between three different sections - the no tool, soft ball, or wand. Also around this time we checked out a video from the library, called "Elmocize". So of course these two came together in how I approached my exercises.


The wand exercises did not have to involve a fairy wand, but why not. If it is a Sesame Street character who carries that wand, even better.
Abby Cadabby from muppet.wikia.com



The soft ball exercises seemed sporty to me, though really they are not at all. They seem to use your fingers more than the other exercises. Why not associate them with a character who only has a few fingers?

Big Bird from muppet.wikia.com



In the "Elmocize" some of the exercising is done from the comfort of your chair. All the decongestive exercises can be done standing or sitting. The "Elmocize" activities reminded me of the no tool exercises.

Elmo from muppet.wikia.com

I tried to get an appointment with the rehab specialist that day while I was in town, but no such luck. I had to go back another day.

Follow Up Doctor Visit

I went to the doctor for a check up. He asked if I wanted to do my blood work before I came in so he could discuss the results with him. I said it would be no problem, I could do it. Thirty minutes into my drive to his office I remembered I about the blood work. When I got there, they asked about it, and then took a blood sample. I did remember to use the numbing cream so when the nurse flushed my port it would not hurt. When the doctor came in he gently asked if I wanted to try to do my blood work before, or just wait and have them do it at the office. I would have to wait longer for some of the results, since they only can do some tests at his office. I opted to just have them take the blood sample there.

My doctor said everything looks great. I showed him the lymphedema, and he wrote me a referral to the specialist. He seems pretty optimistic about my recovery and long term survival rate. I did follow up visits last time I had cancer, and everything always looked great until it came back. It is hard to think about the future or plan too far ahead. Luckily I have lots of good things to think about right now – my dear family and friends, energy to play, enjoying the warm weather, doing my hair, listening to others, tasting food, painting my fingernails, and so on.

Sunday, July 10, 2011

Getting ready for Camp Kesem BYU


On the camper information forms for Camp Kesem BYU it said they would have parents' meeting at the end of June and the packing list would come in May. Every single day during the month of May my kids would ask me if the packing list from Camp Kesem had come yet. Could they remember to practice the piano or put their dirty dish in the dishwasher, NO, but asking about the Camp Kesem packing list they always remembered.

Then my mom would ask me if it came too. She wanted to make sure the kids had everything they needed for camp. The list did not come in May. So we decided they could have sent it in May and it could come in the first week of June. Still they were asking every single day if the packing list had come. The second week of June L, in addition to asking about the packing list, started asking me to email them. So I did. A week later we had not received an email back, so L began her campaign of me needing to call them. So I did. They assured me we would receive it soon.

A few weeks after our conversation we were overjoyed to see an email with the packing list as an attachment. Before seeing the list I was not worried because we have been camping before so I though my children would be prepared. They are mostly ready, but L and C do not own the ten pairs of socks each that is on the list. Plus many of L's socks are knee highs, which she is not sure she wants to wear camping. I guess we run on the lighter side of clothes, and just do laundry more often. We will soon rectify the sock problem, and get the rest of the items ready for the kids to take.


Friday, July 8, 2011

Rhinestone Tank Top

Last summer I was pregnant and did not want to buy a maternity swimsuit. Instead I bought a black tank top with rhinestones on it and wore it over my old swimsuit.

This summer I did not want to buy a mastectomy swimsuit and water proof forms to put in it so I brought out the black tank top. I even added bright pink shorts with it.

My hair has come back. It is now short and curly. The combination of short curly hair, rhinestone tank top, and bright shorts reminded me of something. It took a few times of wearing that outfit before I realized who I looked like.


I had a laugh at myself. When I showed my kids his picture and asked if they thought I looked like him, it really bothered them.

I have tried wearing tank tops without rhinestones and I think I will look for a rash guard next time I am in town.

Thursday, June 30, 2011

Real Age vs Chemo Age vs Wii Sports Age

First my real age is 34. I am glad for all my 34 years. I often have problems with people thinking I am younger than I am. Even when I was chemo sick and bald wearing a scarf, which I thought made me look older.

I was talking with my husband about how every year of chemotherapy treatments ages you 10 years. Here is one article about it. We were discussing how my chemo age is now 54 and since women live longer than men, my husband and I might die around the same time. Maybe at this moment you are thinking "Wow - fun times at their house." On Tuesday the other YW leaders and I were chatting about this and I said, "I have become a cougar in the course of my marriage. My husband married a young wife who is now much older than him." He does not seem to mind.

My kids heard the age discussion and suggested we try the Wii sports age test. I thought I would get a much older age, as I rarely play the Wii, I have a bad arm, I am old, I am easily distracted and so on. I did poorly on most of the skills tests, but very well on the bowling section (my nephew who thinks he is the undisputed champion will have to watch out). My Wii sports age is also 54. Now I am a believer in the validity of that test. So my new course of action is to stop seeing my doctor and just keep taking that test until I can get my Wii sports age down to 34 or whatever actual age I happen to be at the time. I think it will really work out well, or not.

Tuesday, June 21, 2011

A New Look

There is a saying about "What Cancer Cannot Do." Having been through chemotherapy twice I thought I had seen every interpretation possible of it. My mom's relative linked me to a new one. I like this one and made me think of this familiar saying in a new way. I thought I would share a slightly altered version of what she posted.


Cancer is so limited.
Nay, in all these things we more than conquerors through Him that loved us.

It cannot cripple love, it cannot alter hope.
For I am persuaded, that neither death, nor life, nor angels, nor principalities,

It cannot corrode faith, it cannot destroy peace,
nor powers, nor things present, nor things to come,

It cannot kill friendship, it cannot suppress memories,
Nor height, nor depth, nor any other creature,

It cannot silence courage, it cannot invade the soul.
shall be able to separate us from the love of God

It cannot steal eternal life, it cannot conquer the spirit.
which is in Christ Jesus our Lord.

Romans 8:37-39

Saturday, June 18, 2011

Moments That Matter Most

It was nice of the church to make a new Mormon Message video that goes along with what I have been feeling this week and especially today. As anyone who has lost someone close knows those moments distill sweeter with the passage of time.





This morning I heard "Girls Just Want to Have Fun" and it reminded me of when Rachel and I drove to the airport to drop off my mom. As we were traveling the twisty mountain road we heard this song and Rachel said, "Did you burn a cd with party music on it." I told her, "No, radio stations are just that awesome around here." Then we just sang along with the windows down, and Rachel asking me what the abbreviations on the road signs meant. We went through three counties to get to the airport.

Thursday, June 16, 2011

My Mental Health Professional


A few months ago I was tired of being tired. Baby was still not sleeping through the night and my husband was incredibly busy at work. Right after chemo I would walk oh so slowly with different friends a few times a week. When it was too cold, which it often was, I would walk on the treadmill. Then I did a modified Couch to 5k program on it the last 9 weeks of school. On alternate days I would still walk either at baseball games/practice or with friends. It helped me deal with the stress and I think it helped me face the day with more energy. Also it is something good for my body, which I so appreciate (my body that is).

You can see a few things in the picture. I lost my mp3 player so my husband gave me his. I would exercise when Baby would take a nap, instead of do the laundry or the other thousand things I could of done. I put her baby monitor on the treadmill and she slept through almost every time I exercised. L's comment one time when she saw me after I exercised was, "I thought only lumberjacks sweat that much!" Where she is seeing sweaty lumberjacks I do not know. I also would never wear a scarf while exercising. I like to think it helped my hair grow back thicker.

I am still tired but it not as bad as it was before and I know that it will get better.

Friday, May 27, 2011

Music

In this video during the line, "And so my needs are great," they show a women with a head scarf. I got a little thrill at seeing that. It is sort of like when L sees girls in The Friend magazine with glasses on.

It also reminded me of the ability of songs to give comfort. I lean towards "Lead Kindly Light", "I Need Thee Every Hour"(a family favorite), "Come Thou Fount", "Amazing Grace", and Primary songs about family. It is hard to imagine my life, especially recently, without music. I am grateful for the music my kids play on the piano, the Mormon Tabernacle Choir cds my relatives send me, the opportunity I had to learn part of the Living Christ set to music, carpool singing, girls' camp songs, Sesame Street and baby songs, and all the other music in my life.

Wednesday, May 25, 2011

Sisters' Day

With L, C, and Baby we celebrate Sisters' Day the 2nd Monday after Mothers' Day. Brothers' Day is the 2nd Monday after Father's Day. L asked about Sisters' Day and I told her I was too stressed out to think about it, and we could celebrate it in the summer. Then my sister called and asked if L was excited about Sisters' Day because this would be the first year Baby and L would share it. After that I decided I could do the celebration this year. We marked Sisters' Day on May 16, and then began the preparations.



In addition to calling my sisters, I also celebrated the day by my signature on the release form for further genetic testing for the breast cancer study I am in. The release form had a place for my signature or the person responsible for my estate. I was glad I could sign it, though I know my husband would sign it if he had to. He knows I would do anything to help others understand more about cancer, especially the risk for my sisters.






I like how at the end Paul Goodfellow talks about how studying the rare events (like early onset breast cancer) can help with more general problems.

Friday, May 13, 2011

Lymphedema

(from mayoclinic.com)

Before I had cancer I had not really heard of the lymphatic system. Then I had a few of my lymph nodes taken out of my armpit to test to see if the cancer had spread. The first time the cancer reached my lymph nodes. The last time I had cancer they took many lymph nodes out and the cancer had not spread. I started to learn a little more about the lymphatic system.

Along with the lymphatic system, another new word I became acquainted with is lymphedema (lymphatic obstruction). The affected limb has chronic swelling. A common cause of lymphedema is removal of lymph nodes. I worry about this happening. The doctor, and other breast cancer survivors have recommended a few preventive actions. The three main things I always hear are to not overtire my arm, to drink plenty of water, and to try to prevent cuts on my hands and arms.

I carry Baby with my bad arm (right side) because my left chest side has a port in it. Once Baby slammed her head into my port I switched sides carrying her. On a related note, when I had my port flushed this week I applied the numbing lotion to the wrong place. I found this out when they punched the needle in. The nurse showed my how the port had moved down 2 inches. Which I then remembered, but had forgotten in my rush to apply the lotion, get Baby ready, and drive to town. I think that my not overtiring my arm is not doing so well right now, but will get better as Baby gets older.

The drinking water situation is okay. I like drinking water, but I just sometimes forget. The old Southern Nevada habit of drinking water all the time has eroded away.

I am pretty careful about getting cuts anywhere. The dry winter is the worst time, because I get lots of little cuts on my hands unless I moisturize well.

It is crazy the number of times I have compared the right side to the left to check for swelling. When I sleep on my right arm wrong it swells up. I will ask my husband sometimes to verify that I am not just imagining the swelling.

In addition to the swelling risk, I am also unable to have a correct blood pressure reading on the right side. When I had the C-section with Baby they put the blood pressure cuff on my leg, because of my bad arm and the other instruments on my other arm. When I went to Girls' Camp the first time, I wrote about it under my health issues. One time I forgot to remind my old doctor and they took my blood pressure on the right. Then my arm swelled up and looked like it might explode. No, not really they just got a bad reading and switched to the other side.

Beyond swelling and blood pressure, I am also supposed to avoid soaking in hot tubs and other warm pools. I was not sure why this was so I went into one to test it out. I was in it for less then five minutes and my arm started to throb in pain. Now I know why.

I joke with my sister that after I am resurrected I am will not only be able to see without contacts, but also enjoy hot tubs again.

Sunday, May 8, 2011

Chemotherapy and Maragaritas

(from packagingdigest.com)

With Cinco De Mayo this past week I heard many people talking about margaritas. I had adrimyacin the first time I had chemo. It is not put in an i.v., like many chemo drugs, instead it is given by nurse in syringe. The nurses that I had would call it the margarita shot, or for me (after they found out I had small kids) the Kool-Aid shot. Those same nurses would also preach against the danger of drinking dehydrating alcohol while undergoing chemotherapy treatments.

Other alcoholic drinking related terms were often casually thrown around then and now.

The Benadryl I take before chemo would cause me to feel buzzed.
Day 3 of chemo I would wake up feeling wasted, plastered, or like the worst hangover ever.
We could pick our poison for the side effect drugs.
The chemo room full of patients receiving treatment was Happy Hour.

Sunday, May 1, 2011

Baby's Doctor with the kids

I took Baby for her doctor appointment this last week. L and C came with me. Every time the doctor would ask me something about Baby they would answer. When the doctor asked about her crawling, L and C expounded on her ability to crawl whichever way and at whatever speed was best for the situation was in. She could crawl fifty different ways before breakfast and then teach a master class on crawling before lunch, according to them. Her speech was the same way in their eyes, she knew multiple words which she used at exactly the right time. In fact she was currently teaching L how to spell words with Greek roots correctly. How great to have such supportive siblings.

My version of her development was not as advanced. She is healthy and is progressing. Often people ask if Baby is doing this or that, I say she's not and then explain about her delay due to her response to a stressful family situation. Always then the person asking gives me proof of Baby's greatness and how anyone saying otherwise needs to be horse whipped. I then say how she is the last child and we are okay she is acting like a baby longer than our other kids did. This shift in the conversation gives the other person room to talk about how their child/niece/nephew/younger sibling was delayed and is still an awesome person.

Spring Cleaning

We spent a good part of Spring Break deep cleaning all the kids rooms and the three bathrooms. I knew it would be hard to go through Baby's things. It is always hard for me to accept that they are growing up, and since she is our last, that we will not need 3 to 6 month clothes anymore.

What I was not expecting was how difficult it was to deep clean my bathroom. We still had so many cancer treatment related paraphernalia. Some items I was glad to toss, other things I was sad I still needed to keep. Beyond the cancer things there were various items bringing up all different responses. All those headbands my husband got me last time my hair was coming back in, it was hard to believe I will need them for the same reason. There were so many different hair things and other bathroom products, that I either do not need now, but may in the future or I do not need now and will probably never need again.

A separate category was things I was happy to get rid of now, but know that I will need later this year when I have my reconstruction surgery. Mostly deep cleaning was a good feeling of getting to a new normal. My bathroom though was like mocking me for not being normal, and not getting to be normal anytime soon. That is assuming that I was ever normal, which my siblings may take issue with, and that there is even a normal, which I know there is not.

After we were done with that cleaning I decided to focus on anything but cleaning for the next few days. C and Baby had other plans, as he was sick with a cold, and her cold led to her throwing up. More cleaning, but at least this time with more love and less mocking.

Friday, April 29, 2011

Challenges

In August 2005 President Hinckley asked the members of the church to read the Book of Mormon before the end of the year. That year was the first time that I had cancer and more importantly for this challenge, chemo brain. It was arduous, but I did it. There were many reasons, but one was that it was a rare opportunity.

On December 1, the day after my first chemotherapy treatment, the R.S. President in my ward encouraged the sisters to memorize the Living Christ before Easter. I did not attend that meeting, but I heard about it. The first thought to cross my mind was, "Oh no again, why is it only when I have chemo brain that there are these sort of challenges." I decided that I would try, but really had no hope that I would be able to. I still thought there would be value in becoming better acquainted with that document even if I did not memorize it.

It was too overwhelming to even look at it all at once for me. I knew it was a Faith Value project so I looked for aids online. There were some memorization cards to print out, so I did. I talked to the R.S. President again (when you have cancer the R.S. President calls you often to check on you) and she told me about her memorization process. After talking with her I thought how great it was that she was able to memorize it. Then I went to see the oncologist again. As I was driving home I realized that I fully expected that the Lord would help me through cancer, I could also pray and ask for His help to memorize the Living Christ.

Thus began my next arduous journey. I looked at the cards (12 in all) that I had printed out and slowly began to memorize. Every time I had chemotherapy I would get behind of course, but not as much as I expected. I put the cards in my diaper bag and would look at them when I was waiting (for the kids after school, at the doctor, and so on).

One of my friends taught me about eighth notes. After she taught me about them I saw them everywhere. I could not believe that those things I had only vaguely understood to be related to music, had names, and a purpose, and were all over the page when I sang hymns or other songs. The same thing happened when I started memorizing the Living Christ. Everything seemed to be related to one sentence or another of the Living Christ. Those phrases ran through my head all the time. My experience and other blessings that came from memorizing far exceeded my expectations.

The last sentence in the Living Christ is "God be thanked for the matchless gift of His divine son." As I approached Easter I felt the truth of those words.

Monday, April 18, 2011

Fashionable Scarves

C had some baseball games last week. Each parent on his team is supposed to take a turn in the Snack Shack. I volunteered for this last Saturday. Another mom who is a very experienced volunteer said she would do it with me. The team mom also had her teenage daughter come in and help during the busy times. Perhaps this is because they know I am still recovering from chemotherapy and need all the help I can get in the fast paced Snack Shack environment. The people we were relieving showed me where items were stored and so on. The teenage girl in the earlier shift told me she thought my headscarf was cute.

My clothes are mainly utilitarian, not fashionable or trendy, just comfortable and not show too many stains. My daughter L is getting a much better eye for fashion than I ever had. I do try to coordinate my headscarves to my clothes, but not much beyond that.

I have found the secret way to get people, even fashionable teenage girls, to compliment me all the time. That is to lose my hair and wear head scarves. Everyday some nice kind person compliments my scarf. Sometimes Baby and I will be wearing the same color head covering, since I like pink and that just multiples the number of times people will compliment.

Also on Saturday I found out one of the other moms is named Jennifer. I thought that was interesting until I thought it all the way through. A woman who has two children the same age as my two older children has the same name as I do. She is probably close to my age, and spent her childhood in classes known as one of the many Jennifers, perhaps the most common name of our age group. It would be more surprising if one of the other moms was not named Jennifer.




One of my favorite Jennifer songs


Tuesday, April 12, 2011

Parent Teacher Conferences Part II

As I talked to the kids' teachers they had questions about our family. C has apparently discussed every letter or item he received during the cancer treatments with his class.

The conversation with his teacher went something like this:
C mentioned an aunt sent a box of stuff
Which stuff
This and that
That was my cousin, but she is like an aunt to my kids
Oh I thought C said his aunt sent this, that, and the other thing
This was sent my aunt, that was sent by my cousin, the other thing was sent by my sister-in-law
It is nice you have a supportive family. C did say one of his aunts had something with cancer, so it is great they understand
(Then I try to explain the myriad of ways cancer has affected all my aunts, my cousin, and other members of my family. She refused my offer of the family medical spreadsheet I compiled - Just kidding)

C also mentioned the letters as well. Both kids would tell their teachers and others at the school when grandma came and when grandma left. L also talked to her teachers is a more private way about the support she was receiving from her aunts.

Based on my conversations with them, I am sure both teachers would give the various Aunts and grandmas an A+++ this school year in terms of support. I know that I would as well.

Monday, April 11, 2011

Fundraiser

Every year the youth (and their support people) in our ward do a fundraiser to earn money for Scout and Girls' Camp. They thatch and aerate lawns for homes in our ward boundaries on a Friday night and Saturday all day. More than 2/3 are friends and neighbors of members. It is a very physically demanding fundraiser. I have helped in the past, but this year due to my recovering health, Baby, (L & C wanted to go help), and my husband working an insane amount of time, my involvement was limited to phone calls.

They went out this last chilly weekend. It had already been postponed once, so the weather bar was lowered to - snow is okay as long as it does not stick. Beforehand one of the others in YW had suggested the girls wearing matching bandanas while they work. I thought it was a unifying idea so I told her where to get cheap bandanas.

I found out after church on Sunday that the other leaders had gotten pink bandanas for the girls and gave them pink ribbons to wear while they worked in my honor. They had more ribbons than they needed and so they gave the rest to the YM to wear as well. There was a little miscommunication, everyone thought someone else had told me ahead of time.

I was surprised and humbled when I heard. It amazed me that they would even think to do that since there a million different little parts that have to be addressed to help the fundraiser go smoothly.

Wednesday, April 6, 2011

Parent Teacher Conferences

My children have done pretty well at school in the past. Their last parent teacher conference was right after the mastectomy. I can't really remember anything from it except that C's teacher held Baby the whole time during his. Then she walked us over to L's and made Baby giggle, and then L's teacher tried and Baby got mad.

For this one I only took Baby, and C and L were partying with their friends. (After the conferences the party moved to our house and then another house until 10:30pm.)

C's teacher appreciated his sensitivity, and his ability to rise to academic challenges. He still has problems rushing through his work. She said C has been very open about his hard days and the class has been sort of his support group.

L's teacher talked about how well she does academically, and some advice for getting prepared for junior high. L did some amazing things this year, more amazing to me considering all that was going on at home.

Sunday, March 27, 2011

Magic

This week we got our acceptance letters for Camp Kesem. When we first broached the subject with our children, they were apprehensive. One of them even said, "Why are you trying to send us away?!"A few more winter months of indoor activities has led to to a different response. Now they are more happy and glad to go. L is anxiously awaiting the packing list, and C is wondering how he should act when he is there.

Baby is looking forward to visiting her relatives the week her siblings are at camp. I am arranging for more rounds of swimming lessons before we go. My husband is pretty sure his job will have slowed down by then. We are all excited to go and thankful for this opportunity for our kids.

It is the little things

I have been cutting my nails short and painting them dark and glittery. This is to hide the fact that the fingernails have separated from the nail beds in some places. Every time I use my fingernails to peel something, I think "Am I giving up my fingernail to get this price tag off?" My children with their glorious firmly attached nails are my helpers.

Baby likes to pull hair. It is not really a problem for me, mainly just for the unsuspecting ladies in our ward. She looks at them and smiles, they lean close - captivated by such an adorable baby, and faster than you would think she reaches out and pulls. Also surprisingly, most of them let her keep doing it. She sometimes fingers the back of my scarf like a she would a blanket. But no, hair pulling has not been a problem for me.

C keeps thinking that I have had cancer three times. He gets confused when I tell people that I have had cancer twice, because he still feels like we are in the middle of cancer. We keep discussing it, about once a week. After we talk I think he understands, and then he will say something about cancer three times again. Maybe when he does not feel like we are in the middle of it will it be easier to comprehend.

Baseball practice has started. There is a mom of one of the other players who reminded me at this last practice that we knew each other already. I met her last time I had cancer and L was doing ballet with her daughter. She looked familiar but C has done baseball a few years. I just thought I had seen her around. Chemo brain is just another good reason to be nice to everyone, because you might be friends with them without remembering.

Saturday, March 12, 2011

Another in a long line of follow up visits

I saw my doctor again this week. He said I am still healthy, and should start getting more energy and hair back in about two months. At the end of the visit he started talking about a proposed screening regimen my daughters should begin when they are 18 (10 years before I was first diagnosed).

Looking back, I can see how it is nice that he is concerned about my whole family. It was kind that he recognized the importance of my children and their health to me.

At the time though it was too much for me to think that not only does my having cancer negatively impact their life now, but also in the future whether I have another recurrence or not. I tried to talk about how going on the high risk screening plan has worked out for my younger sisters (not that well considering they have been pregnant or nursing most of the last five years). He was trying to be as gentle about it as possible and I was trying to deny the fact that my daughters may have a higher risk of getting breast cancer. In the end I said I was going to try not to think about it for the next 5+ years until I had to, and hope in the meantime cancer was cured.

So of course that was all I could think about on the hour drive home.

Marching Past

I read somewhere that it was Women's History Month. I have been to the cancer center a few time recently, and I was reminded of the terrifying measures that they used to employ on women who had breast cancer. As rough as things are now, there is so much more consideration and support for all people who have cancer.

Also this week, C told me a story about his class. It seems in the Weekly Reader there was an article about a women's rights issue. His class had a discussion about it, and all the girls and C were for the rights, and the other boys were not. In C's interpretation the substitute teacher even tried to persuade him that his view was misguided, and tried to appeal to him emotionally. He resolutely stood steadfast, stated his refutation to the sub, and even convinced another boy in his class.


Sunday, March 6, 2011

Of scarves and struggles

Last weekend, like all of Nevada, we had stake conference. On Saturday night I met my husband at work with Baby and we went to the adult session. Just as we were sitting down a couple came up to us and started talking about chemotherapy treatments. This conversation is not that unusual except that we had never met them before. The wife said she knew we would understand because she saw the scarf on my head.

I think how anyone deals with the loss of hair is a personal decision and is based on many distinct and specific factors.

This week in particular several kind strangers have come up to me and talked about their or their loved one's chemotherapy treatment. I like to pretend that I just wear a scarf on my head for fun, but somehow all these people found me out.

I remember when I was first diagnosed the second time with cancer. I had gone to Costco to stock up, and I saw a lady also there with a scarf on. It reminded me that even cancer patients have to go to Costco sometimes. Their whole life is not doctor appointments and feeling sick and tired even if sometimes it seems that way. I felt not so alone in what I was going through.

The scarf on my head lets others know I am having a specific kind of struggle in my life. There many other people who also share that struggle, and want to talk.

I know that I would not be willing to wear an identifier of my other struggles in life. It is hard to even imagine talking with a stranger, even a kind fairly anonymous one who is going through a similar situation, about those struggles.

Tuesday, March 1, 2011

Sweets

Last time I had chemo it lessened my desire for sweets. I felt like they did weird things to me and did not taste good anymore. Even fruit that was too ripe was too sweet for me.

This time around I joked maybe it would switch back. I felt like I could tolerate sweets better from the Tuesday I had chemo to the Sunday after. By Sunday night though they were not tasty anymore.

I still make sweets for my family, and others. My husband and L have a definite sweet tooth. Everyone in our family though cut back on sweets when I stopped liking them. Now they all get to the too sweet point faster than they used to.

Tonight I making cookies with the Young Women. I would say the others I make sweets for almost always includes them.

Blue and Gold Dinner




We have tried keeping up with C in Cub Scouts. He would usually attend the weekly den meetings. We were unable to have him participate in the Friends of Scouting breakfast. Mostly his Cub Scout shirt has been ironed when it needs to be, and we've kept track of his assorted Scout paraphernalia.

For the annual Blue and Gold dinner I thought I could handle bringing rolls. I made them up to the second rising and baking stage, then froze them. That day I thawed them out and put them in the oven. They burned on the bottom, so I kept those ones at home and bought some others at Smith's to bring. Then right before we are going to leave C announced that he did not know where his neckerchief slide is. We looked around a little bit with him, and then I found the multicolored ball in the picture above and told him to wear that instead. He did, though not until after a meltdown. It was the right size and held his neckerchief firmly.

On the way there I thought about what a tired scattered mom I had become. The effects of cancer treatments were reaching long arm into this special time for C. I thought well at least we are getting him there.

While we were at the dinner, I was talking to my friends and they mentioned someone had brought store bought rolls. They wished they had done that, because apparently I was not the only one with roll problems that day. One friend detailed her three attempts to make rolls. They were surprised when I said I was the one who brought them. The other Cub Scouts did not mock C like he feared about his neckerchief slide, but told him it was cool. While there I realized we would have to buy him a new slide soon anyway when he has his birthday.

During the dinner L shredded the part of the plastic tablecloth hanging on her lap. I joked about her relieving her stress from the past few months. Between C's meltdown, L's shredding, my worrying, and my husband coming late from work it is a wonder that the evening was as pleasant as it was.

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.