Monday, November 28, 2011


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.

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


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.