Tuesday, December 10, 2013

Birthday Bonus

I woke up the morning of my birthday early to take some pills. I realized I was surrounded by those I love and who love me. A good feeling on your birthday. The weather was snowy but it was warm in our home.

There were several birthday wishes and cards and tiny miracles. One tiny miracles was when a member of the ward found my dad's big truck keys in the snow on the way over to our house. Another was the magic my aunt made out of the family history information that I gave her and turned it into Family Ordinance Requests for when C goes to the temple for the first time. I am hoping others on that side of the family will help him and L finish those names. Also another member of my family made prints and framed pictures from our family pictures we had done recently.

Finally my dear R made a beautiful video with pictures from our family. He did such a wonderful job at making me feel loved. There were so many well wishes and special videos and cards.

This week has been better health/comfort wise.Though last night I ended up freezing teeth chattering cold. Luckily my mom is the queen of hats to combat that sort of cold and hooked me up quickly.

Saturday, December 7, 2013

Thanksgiving, Thanksgiving, Vitals

Our Thanksgiving with our immediate family was relaxing spa like day with our favorite festive non Thanksgiving foods, football, and the parade. It was a calm family day.

The next two days were full of in law festivities. We had a full Thanksgiving dinner on Friday and then a got together again for my nephew's baptism on Saturday.

We thought Baby was sick from all the fun so when she threw up on Sunday we kept her home from church and did not worry about it.

Then for the next several days my vitals were off, I was extra sick and exhausted. It had bits of brightness shining through. I picked out a surprise for my kids, someone Christmas caroling from our ward brought their dogs who sang the theme from "Sponge Bob Square Pants" which still makes me laugh thinking about it. We received sunshine and soup and music from Dayton. A new social worker came over who listened most of the time, and my kids were interested in meeting. There arose an opportunity to send extra love to others. My mother-in-law was the official snow player with Baby.

Finally the moon, saltines, gatorade, and my vitals aligned. I felt like I was coming out of it. Then Friday I had a rough morning again. R was home and later that day we finished signing some important documents.

I was anxious this morning again not wanting to repeat earlier this week. Along with practical considerations my dad and R gave me a blessing which helped to calm the storm in my spirit and body.

Thursday, November 28, 2013

Wacky Wednesday

We often bought milk on Wednesday because there is a store that has a sale on wacky Wednesday. On this Wednesday things lined up better than milk at a good price.

First I had a good night's sleep. Which made the morning visit from some relatives that much more enjoyable. I have the sweetest nephew ever. Now hanging in my room I have verifiable 200 heart proof, plus on my dresser I have some pictures he drew as well. I loved hearing the cousins laughing together and visiting with my in-laws. It made me forget how tired I was, luckily my sister-in-law remembered(she is so kind) so I could go rest.

Later that day Mario came from NY to take some black and white pictures of our family. He brought someone to hold my water for me between shots, others to help Baby keep her hands out of her nose and her happy face looking towards his direction, to go ice fishing with Baby when her shots were done, someone else to leave a delicious dinner, someone to make the weather nice so we could go outside, and even someone to plan our joint birthday party. No one could have planned the time of day, how I was feeling, the nice weather, the awesome support staff better. It all went together so well. Mario even gave R and I a few Polaroids at the end. I am so grateful to him and his support staff.

Baby was on high silliness during this time. She told Mario he looked like Pop-Pop and my uncle that he was her dad. Mainly I was glad that she felt comfortable enough to talk to them at all. Pop-Pop bought Baby a doctor's kit and she has used it on me several times. She had made her own homemade one before. She told both the aide and RN/case manager that she fixed her mom now.

My aide came over and said I looked much better. The case manager came over and told me the new social worker should come next week. This social worker has a background in pediatrics so hopefully she will be a better fit for our family. She also explained more about the medication and how often I can take it.

Late Night Wake Up Call

Monday and Tuesday morning were a reminder that I am still very sick. When my aide came over to help I was very willing and needing to have her help me get ready for the day. Her years of experience and gentleness helped me feel comfortable. She had me do what I could and she just calmly and kindly did the rest. We discussed what could be done so I would not have to have a night or morning like that again. Then after tucking me into bed to get more rest, (I was telling L about this later and she said she wanted an aide too.) she went and did stuff for Baby. When my aide does stuff for Baby more so than when other people do stuff for Baby it makes me feel like I am involved in doing it. Baby climbed into bed with me and watched her Kindle until my cousin came. Then Baby happily slid off the bed and went ice fishing in the backyard while I slept more. My mom continued getting the house clean and ready for the holiday as well as other projects, like when I wake up worried we won't find out gloves because they are all still packed away. Baby came in and we had lunch together and a nice visit with the cousin before she went to go play with her girls.

L and C came home from school and my dear Primary Presidency brought us dinner again. My favorite time of day is snuggle talk time when all my kids are home. Later that night my cousins came over, and I loved seeing them again! I like to visit while I still can. One small kindness that I really appreciated is beforehand I had told them what time I usually go to sleep after my last meds of the day. Without me even asking they kept track of the time and excused themselves.

There are so many things that I am grateful for that come at the right time. For example, last Saturday Baby was really wanting to play with me and I was really needing to lay down. The doorbell rings and there is a craft kit from Minnesota. Baby opens it and we look at it and see what we need to do. Then C, his cousin, and Baby finish the craft kit (shadow puppets and kalidescope?) while I rest in my bed. They also plan a play with the shadow puppets. They come in my room and I get to hold the flashlight on the wall while they do their play. Yay, a fun creative activity I can help with but not very demanding time or energy wise. Things like that happen so often - I am grateful for those helping out our family in so very many ways.

Monday, November 25, 2013

Non Denominational Chaplin Visit

Today I met with my Primary friends again or the lovely ladies of the Primary Presidency. Baby sat behind my chair looking at the Kindle Fire most of the time during our visit. She was very clingy today. It was a nice visit with them, they are so sweet, and I am glad the Primary is in their strong capable hands. It is a miracle we all are in Presidency together (since both the secretary and I had both just moved in) and that we get along and have worked so well together and they definitely carry on aptly in my absence. I remember those first few meetings and I was so concerned that they had all they information that I have in my binder, because I was worried something would happen to me. It has made this transition time easier for me to not worry about that now. I love those ladies!

My daily aide and case manager both came over too and continued building their relationships with our family. Baby even let the case manager carry her downstairs. Plus they both helped with some questions I had and suggested some additional comfort measures.

My mom braved the stores to get a few items. She said the only hold up at the store was the obviously confused spouses of the main Thanksgiving Day cooks looking for a specific ingredient. A friend dropped off dinner but I am sad I was unable to visit at that time.

The chaplin came over to visit just in time to see a stressed out Baby. The weather was nice, the sky was so blue, and so we all went outside and it lowered the stress level for both Baby and I. We had a nice talk with some crying and laughing. My previous visiting teacher Snow White came over and laughed with us. I have had many excellent visiting teachers, including my current ones who call every day and make my favorite cookies.

Both C and L came home from school looking forward to the new Studio C tonight.

Sunday, November 24, 2013

The Center

Today I made it to sacrament meeting again. Both R and I were surprised that the talks were not about tithing and tithing settlement. All those years of the fourth Sunday in NV being tithing Sunday are hard to overcome. There are so many tired people like me who go home after sacrament meeting in our ward. We could fill a germ free bus. My family used get to church earlier and I would go around and talk to the Primary kids and their families. Now it takes me a long time to get ready and we are always late. I take many more naps before church than I used to.

L on the other hand is getting up and getting ready earlier each Sunday as she helps out at the life care center. We also use her as our secret spy and ask her what stake business there is each week before we go to our ward.

My aunt posted about my cousin and said the doctor went to the center of his brain during the surgery. She also said he is recovering without complications and should go home early next week to start his long recovery. The center of his brain thing intrigued me. Right now I think the center of my cousin's brain is determination. It reminded me of part of a quote by James Joyce "forged in the smithy of my soul." What is in the center of my soul, what has been "forged in the smithy of my soul?" Has it changed through my life and will it continue to change?

Saturday, November 23, 2013

Bittersweet Saturday

My cousin came out of his surgery okay - Yay! Though it was hard to see the pictures of his strong body in the hospital and in so much pain. Prayers for recovery now.

His brother and nephew actually came up and helped finish the painting trim project. Baby adores the 11 year old nephew, and would follow him around all day. You can tell he has good parents because he is so respectful and good natured.

One of my aunts keeps coming up to help paint and I want to talk to her, but I sleep and do other things instead. She is a ninja painter just quietly working away on whatever needs to be done. I rarely see her, but I see her efforts and love everywhere I look.

My aunt and uncle(Santa Claus) and cousin who have staying with me this last week left today, the painting was done and to prepare for their family celebrations next week. I needed their love and counsel and support this week more than I knew when they originally planned on coming. What they sacrificed for my family was invaluable. I can't write anymore or the keyboard will short out.

R took the kids to their much anticipated Camp Kesem reunion. He said Baby was clingy but the other kids were off with their friends the whole time. Plus we remembered what we were supposed to bring for the potluck.

My sweet visiting teacher brought by her delicious star pressed ginger cookies again. My mom moved back in and even gave Baby a bubble bath that was enjoyed by all. Usually any type of personal hygiene by Baby is met by howls of resistance.

My wonderful college roommates came and we talked forever. I started to fall asleep while they were talking. It reminded me of staying up late talking in college and the same thing would happen. Except late in this instance was around 5:30pm and I had multiple naps throughout the day. Either way it was a terrific chance to see them and I love the amazing women they have become.

I just also want to say we appreciate the prayers and the flowers and cards and good thoughts and everything. It strengthens us and makes us feel not alone.

Bits and Pieces and Breathing

First let me tell you L saw a special early viewing of  "Catching Fire" on Wednesday evening with her dear friend. That was after her NAL (National  Academic League) practice. She came home early enough to be heart attacked by the YW in our ward. She has been trying to find a Christmas dress with my cousin, and finally found one yesterday after doing a fashion show at our house. I think she might be getting the cold that R has. She loves her new room and that Santa Claus has been helping fix all the little things in it like the door knob. He even rescued her one time from a closet that was trying to kidnap her into another dimension.

C has been busy with band practice. His recycled instrument band turned into a real instrument band that was asked to play at the 6th grade Spring Dance. Earlier this week he told us his favorite cookie was pumpkin chocolate chip which surprisingly we had not yet been given. Then his good friend's mom came over and she brought pumpkin chocolate chip cookies.

On Thursday when I got my haircut by a kind soul, Baby said "Now we are twins!"  Baby also enjoyed running around outside with my cousin, and just playing with her while she was here. It is the best play therapy with those that love you.

The painting continued with my wonderful relatives doing double, triple and quaddruple duty. Plus if you knew my relatives you would know they all bring light and love into my house while they are here. I really appreciate being surrounded by that love all the time.

We meet my daily hospice worker and she has the same name as my youngest daughter and endeared me and Baby both to her. It is very important to me that the hospice workers get along with Baby and my kids. The social worker we met was not so endearing and even when you are hospice you have the right to request a change to someone you feel comfortable with. That is what we are doing.

On Thursday night I had many disturbing hallucinations. So much so that I had a hard time sleeping. My beautiful cousin who teaches restorative yoga came over to guide me in learning some practices. First she helped me take deep breathes while in a certain position. I had pretty much given up on taking deep breaths the rest of my life because the pain was so sharp when I did. I could feel my body rejoicing with those breaths. I almost started crying when I took those first few breaths without pain. In addition she taught me this very effective breathing technique that calms the central nervous system. As she was explaining it I thought of my hallucinations and knew this was what I needed. I used it last night and had sweet dreams.

My cousin's wife brought some delicious homemade soup and bread. When I was at the Huntsman last week I dreamed about homemade soup and bread fearing I would never be able to eat some again. I have eaten this kind woman's tasty food before and it was like an answer to an unspoken prayer when she brought her meals over.

Throughout the day we were worried about my cousin. He is a big strong guy who came and helped with his son on Tuesday, and his wife actually has been the meal coordinator. We finally heard that he was admitted to the hospital and would be having emergency surgery this morning. Our hearts and prayers our with them today.

Thursday, November 21, 2013

Wednesday and Thursday

More painting and tying up loose ends. For me that partly meant turning over some family history stuff I was working on to my aunt, and having her help me with others. My old ward helped so much with painting this day as I rested. They moved so much furniture in and out of rooms and painted and painted. My relatives painted my room in one day. R was home on Thursday so we could meet with the hospice worker.My advice to as much as you can now(will and so on) so you don't have when you tired and just want to spend time with your family later. My parents came up and more relatives on both nights to visit.

 Also a friend let me know Baby was always welcome at her house, R would not have to worry about finding child care.

L's piano teacher is so sweet in so many ways and brings Baby new play dough every time she comes. Which if you are at our house any amount of time you will probably have to play with her.

Another friend helped Baby work off stress in her bonus room playing with a bunch of boys.

My visiting teacher brought the best ginger cookies I have ever eaten in my life, and they have a star pressed in the middle of them. I am generally not a cookie fan, but these are so good.

My R.S president is letting my mom stay at her house for awhile.

My cousin is dealing with the schools for me and brought her wonderful friend to cut my hair at my house.

My other cousin took C to early morning orchestra so R and I could sleep in on his day off because R is sick.

My aunt knew I was afraid of being alone without me mentioning it.

My brother and sister in law brought C the perfect Buster Posey jersey, and some thoughtful things for our family.

My uncle(who Baby calls Santa Claus) and petite aunt work all day long to finish painting our house and help the household running smoothly. Plus they are good at winking at me or making me laugh at the right time.

We fight over the fox blanket my friend sent,and enjoy the flowers, and the food brought over, and too many to list and that really do help us to feel love in every moment of the day.

R and I went downstairs with C to look at how they arranged and improved his room. As we walked through the basement there were people quietly working hard to make our burden a little lighter at this time. It made me think of how often it happens, not just on this side of the veil, but probably even more on the other side too. Those spirits assisting us in ways we can't fathom. I am grateful for the opportunity recognize and appreciate a small part of the love and support and acceptance we are receiving in our life.

Decision Tuesday

My cousin took my to my doctor appointment that day. It took an hour for the blood draw. I thought it was a good thing the lady who did on Friday was doing it again. In retrospect she was a little too close to us already and was super kind, and couldn't do it after 2 pokes and all of us crying. Then another lady came, and she was not kind but she did it in one stick. They still ended up needing my cousin to help them out by passing things to them. Then we talked to my doctor's head nurse about some things, while we were waiting for the blood results to come back. She came back in with my doctor and my oncology team and we started discussing having someone come in and help. Each member of the team had important information they relayed. Then my doctor looked at the latest blood draw results (chemo wasn't working, my liver is failing very quickly) and asked if my cousin/family knew the seriousness of it and then she switched the topic to hospice. I have to hand it to my cousin who didn't breakdown during all these things. She displayed strength and grace during this incredibly stressful time. My doctor gave me several hugs and then the team left and came back in with some other information which they wrote down. We went to the pharmacy and did some FMLA stuff for R. I spent the rest of the day trying to tie up loose ends and visiting with family and friends who were helping. I didn't want to call my parents and tell them, but eventually I did. It was hard.

I was a little relieved about going on home hospice. R and I had talked about it several times and knew that it was a possibility when we found the cancer had spread. Though later in the evening I was discussing it with my cousin as we were picking C up from his friend's house, and I was worried about this choice and my family. My cousin reminded me that the doctor's suggestion was made through her experience as a doctor and her experience with me and my specific case and multiple test results.

Then my aunt brought an oncologist that I wanted to talk to about my options. He listened closely to everything I communicated and then reaffirmed our decision. He kindly took a long time to answer the many questions we (R and I and my family) had about home hospice care and how that would affect our family and quality of life. Both R and I are at peace with this decision and can see so many things that have fallen into place by I feel a loving Heavenly Father who know we would look to Him. I know He wanted us to see the love and miracles on this path. We have already and I know we will see more.

After the doctor left we went and cried with our kids. The kind of cry all those plates of cookies can't make better. I know we will cry more, I know we will love more.

Sunday or some new clowns come to town

I was actually a little surprised I woke up on Sunday, because I got really sick after my family left and was so  beyond tired. C and L went and helped out with the shortened Primary Program our ward did at the life care center. My ward really helped my kids be able to have that opportunity. It was important to me that they did because I knew my grandma had enjoyed church services when she was in the hospital so many years ago. My family came through to say goodbye, and I started my pain, tired, nausea dance again. My in-laws came to go to church with us and my aunt B and cousin from CA came over. I really wanted to go to church to sing the songs and to take the sacrament, so R helped me get ready. I loved sitting in church with my family, I loved singing the songs, and I loved taking the sacrament. I almost did not make it through all of sacrament meeting, but after it was over my aunt took me home and helped me so much. The biggest immediate effect was the med chart and helping me realize that round the clock meds would improve the quality of my life. She also helped talk to the whole family about the seriousness of my condition and the importance of comfort  care. She gave R and I some options and some things to talk to the doctor about it.

Then my aunt and uncle came. My aunt B reviewed the med chart with aunt L. My father in law left a blessing before they left. Monday morning my cousin M and her husband S(who basically quietly worked painting 14-16 hour days until he had to go home) came over and all those relatives began the intricate dance of laundry, dishes, Baby care, my med care (my aunt L would set her alarm and come wake me a few times in the night to make sure my pain and nausea were under control.), FHE lesson, running L and C around and repainting my whole house. If it sounds like a miracle, it was a miracle to watch. More relatives came over, even if they were battling their own troubles they came to help. One of my aunts is one we all just are sure she is coming though noone is ever sure when she will be there. She has a calming influence on everyone and is aunt Baby can easily recognize.

Friday and Saturday or I danced all night

Last Friday seems forever ago. Time has really sped up. My mom went with me to my oncologist at the Huntsman. We had a wonderful lady who was able to draw my blood the first time. That was an encouraging sign. Then we saw the doctor and we kept waiting for the blood results but we didn't find them out that time. We did schedule a port insertion the following Friday so blood draws would be a thing of the past. We changed meds again and went to the pharmacy. We also got the recipe for the amazing Prune Frappe (1/2 cup milk of magnesia, 1/2 cup prune juice, and 1 cup of high fat ice cream. Blend together and results within 8 hours. Personally I found it to be very effective.) The doctor discussed with us again the discouraging news of the week and again made sure we understood the seriousness of my condition. My in laws had come up and spent time with Baby while we were at the doctor. I also did life story work with Heidi Parker of Memories and Milestones. Then I was exhausted.

My siblings and their spouses and kids drove up that night. The next morning when we woke up my brother (Saint Nick) arranged a few Christmas presents (just like when we were kids) in the front room. It was so fun. Then my siblings brought their kids over to share and laugh and play around. It was so nice, but my medication was not in control and I was in so much pain and so nauseous. I kept getting behind in both both those, but my family accommodated me lying on the couch while the cousins played. My sisters both brought kind thoughtful gifts for my family. We had to cancel family pictures because I was too sick, so my sister in law took a few in the house, and my neighbor took the whole extended family outside the house.That night we had a laser tag war in our backyard. Actually I stayed inside and shot my gun through the window. L and C were running around. Baby was off in the woods in the back and then come running through shooting at everything in sight. My brother stood on the spinning merry go round and fired all around. Then I had requested a dance party so they set up disco balls and dj stuff in our basement, and we danced. It was so much fun and I was so happy to be with the people I love so much. I could only dance one song at a time and then sit out two, but it was so worth it. My dad said a family prayer at the end and we hugged and said good bye. I love my family so much, they did so much to make me happy on such a painful day. They have always been so good to me.

Thursday, November 14, 2013

Chemo two days later

This morning was a good learning experience. I knew that since it was two days after chemo that it would be a physically difficult day. It started out nice saying prayers with my family before the kids went to school. Then Baby climbed gently into bed with me and we went back to sleep. Baby woke up and I sent her downstairs with my mom. I knew I needed to get some anti nausea meds in me. So I had my mom help with that, and then she cleaned up after I threw up anyway. Baby was sort of having a I want my mommy to do everything for me kind of morning. My mom helped me to be a mom to Baby. I thought the pain was just in my stomach, but I think need to remember to take my pain pills with the anti nausea to really help my stomach settle down. Also take the anti nausea in the night. With all those pills I took a nap and basically woke up in time to see C come home from school. So not much visiting today. My mom has been here on rough chemo days before and just kept the house going and even did some ironing. I am feeling okay and know that this has always been the roughest day during my chemo cycles.

Also the CA relatives have arrived in Utah, and hope to be able to see them sometime. Not just for me, but I know that my CA born husband would love to see them as well.

Thanks for your support packages and calls and comments and texts. Even if I don't reply I am still glad to know you are there for me and my family.

My Amazing Children

Monday and Tuesday were necessary but difficult days. Wednesday I had an emotionally hard morning, but my mom and Baby were here to cry with me. Then my aunt/personal secretary (I can not express how grateful I am for her so lifting so much of my burden) and my cousin's wife came over and we got some things planned and done. Also yesterday we started getting packages from our wonderful family and friends.

I love talking to people in a honest loving way. It helps me even if it is hard things to talk about. One thing I shared with them was this video.


This week has been very outwardly undignified for me and I have needed help with things that I had hoped to always be able to do myself. My family yesterday helped me realize that no matter how much assistance I might need with the very basic activities of daily living that dignity comes from within. That it is part of our divine nature.

Of course later that same day another aunt sent me a song about how my family will be here for me through it all - the dancing and the crying.

My relatives also cleaned some things and helped me get the paint for the big paint project though the customer service in the Lowes left much to be desired.

My mom took me to C's parent teacher conference where I refused to sign the parent contract stating I would help with his homework and send him to school and all that. She understood. She was extolling his good qualities kind, responsible, brilliant, and she was using her folder of his collected work show me. His teacher then talked about a interview that he had done with me the night before. I said, "What, let me see that." C said, "Remember we talked about it on phone." He filled out his interview paper by filling in the story I told my kids about Nurse Sam. We were laughing and laughing at his resourcefulness. Also in his class they have been having Battle of the Bands with their recycled instruments (like from milk jugs and tissue boxes). The teacher told us that his group you could actually tell they were playing a song "Smoke on the Water" and that were really good. He is so amazing. I love being his mom.

R and I went to see L at YW in Excellence. She was in the the group presentation and she presented individually about her knowledge value project, and played the piano for the opening song. She made a digital scrapbook for her grandma about the grandkids. She seems to have sort of missed the awkward junior high stage. She has such poise and grace to go along with her talent and beauty. She is wonderful older sister and a good example to the younger kids and me too. I told R we needed to stay until she was done hanging out with her friends. R is such a good support for the kids too. He is knows what is going on not just in C's Scouts but her Personal Progress too.

Wednesday, November 13, 2013

Baby is sitting by me right now

Yesterday was a stream of tests and news. It seemed like after every test the person administering the test said, "Now tomorrow you will feel like someone sucker punched you here." They were right maybe they know a thing or two about cancer at the Huntsman. Here is a list of tests - brain MRI, liver ultrasound, heart ultrasound and liver biopsy. For the liver biopsy I only had Versed (an anti-anxiety not the pain killer too, because I was worried about my reaction to Fentanyl from after the ERCP - they usually give you both.) It made me think the nurse was doing a crossword puzzle, instead of charting my vitals which she laughingly told me when I asked her. When they were done I asked them if there were anymore needles (I thought would do 6 instead of 4). Then said no and then told me I was their favorite patient.

Maybe more - I can't remember because I have chemo brain.Yesterday I had 2 hours (starting at 8pm after a full day) of them trying to stick me and get an iv in. Finally they called in the Air Med crew from the U of U and they got it in during their first try. Jay and Julie in their blue flight suits were our heroes. They invited our kids to come down and get a tour. Then the nurses gave me Epirubicin. The head nurse on my floor and the head night nurse for the cancer center asked for my doctor's name and said they would call them in the morning to start the process for a port or a picc line, so multiple sticks would not be in my future.

Here is a mixed bag of news - they found one spot of cancer on the chest wall and one small spot of cancer on my brain (though they claim there is no visible changes and they will probably treat it with one super shot of radiation, but is not a high priority.) My doctor said my bilirubin level was 5 on Friday, then 7 on Monday, then 5 on Tuesday before chemo. The doctors were intrigued with those results.

Tuesday, November 12, 2013

Manic Monday

Monday the plan was to do an ERCP where they would look in my liver and put a stent in if they saw a blockage to help improve the liver function. A relatively easy procedure, and then see the oncologist for blood draws and maybe chemo, and here's the important point - Go home!

It was a beautiful drive with all the fall leaves on the way to the Huntsman. The old homes are so neat to see too.

I learned some new things and met some nice people. One thing I learned is that they can give you pretty light blue socks, instead of ugly tan ones, if you have small feet and a nice nurse named Nick. He was so kind. He helped us through the whole day. Of course, they had a hard time putting the IV, but they left it in after the procedure. They have used it for multiple blood draws and IVs since they put it in.

They took me back for the ERCP, which went fine, except there were not major blockages so they didn't put in a stent. Recovery started out okay and I drank lots of apple juice.  I asked the nurse if I could mainline apple juice because I was so thirst.  After that I don't know what happened because I was so out of it.  It was so scary.  Between what the nurses and R said, I will tell you what I know. R said my vitals stayed good the whole time. My nurses said I could not stay awake for anything. I felt so weak and could not talk or move my body at all. Somewhere in there I told everybody about my kids and my cute husband, because they teased me about it later.

Nurse Nick was always on the periphery when I opened my eyes.  The doctor came in because this was not a standard recovery - something was wrong - so they decided to admit me to the hospital.  His exact words were, "You look like a kitten could wrestle you to the ground right now." Nurse Christie said luckily they don't have too many kittens around in the hospital.  She got me ready to go up to my room.  We formed a little parade to go up to my room.  Somehow, Nurse Nick got there before we did because I had forgotten some of my belongings in the recovery room.  That was a really scary time and I was so glad R was there with me.

We came upstairs to my room and met with "The Team", who had a lot more more questions and decided that I needed to fast for another day in preparation for a liver biopsy on Tuesday.  They told me I could have as many clear liquids as I wanted until midnight - woohoo!  Since it was about 8:00 pm by this time, R and I ordered a buffet of clear liquids:  broth, jell-o, Italian ice, Powerade, and apple juice, of course.  While the food was being prepared, I had a CT scan of my chest.  They found a small tumor on my chest wall (they told us on Tuesday).  Then I talked to my wonderful children on the phone and went to sleep (as much sleep as you can when they're checking you all night long).

Special note:  I am trying to do better with my painkillers.  It is true that I thought they would make me groggy but they seem to have the opposite effect in the middle of the night.  I'm not yet used to taking painkillers everyday, all day, but I am trying to do better.

Tuesday morning has been me wanting to flee the hospital but instead staying and trying to work out the schedule of my liver biopsy but which might take a decree from the Governor to happen.  I did have a liver ultrasound this morning and I'm going to have an EKG and an MRI of my brain today.  Plus, the doctor just came in and said we could start chemo today - a very low dose because the liver will have to process it.

One of the doctors had come in this morning and said I would have to do all of those tests spread out over the next few days.  That's when I told them C had a parent teacher conference tomorrow and I wanted to go hear how great he is and L has Young Women in Excellence tomorrow night and I want to go see how great she is.  The schedule still isn't totally set but they understand now that I'm not going to be in the hospital tomorrow.

A note about toes:  Somehow, my light blue socks are not protecting my toes.  So many nurses have run over them and my husband has hit them with his backpack .Protect the toes.

Latest and greatest update:  The doctor just came in and said they will make the biopsy today, and the EKG of my heart and the first round of chemo and I can still go home tonight.  Woohoo!

Sunday, November 10, 2013

The Best Primary Program Ever

I was so sick, tired and in pain when I woke up Sunday morning. Both my dad and R had to coax me to take my pills. I went to the Primary Program anyway and my counselors had set up everything by the time we got there. I was tired during the program practice the previous Sundays so I had asked the first kids in each section (I had organized them oldest, middle, and then youngest) to help the younger kids so I didn't have to, and to give them more responsibility. That turned into such a sweet part of the program to see them helping each other and being so unified in all they did. They sang like angels and shared their testimonies (they wrote their own parts.) During the program I felt no pain and was not tired at all. I just enjoyed being among those wonderful, happy, excited, hopeful kids! We have a small Primary (there were 36 kids participating) and every child had a part and if they wanted to sing a solo they could as well. We still ended on time.

C is such a force in the Primary. He had a solo singing part, he gave a thumbs up to everyone on his row who finished a part, his enthusiastic deeper voice stood out as the children sang, and he helped the kids in his section. I love being in Primary with him! Baby waved to us so much, it was adorable.

It was emotional for me to see it come together and seeing those kids shine! I knew that I was exactly where I wanted to be during that time. It was also bittersweet to know that I am not sure how many more opportunities I will have like that. At the end of the program, the Bishop gave closing remarks. He praised the wonderful children and especially how they helped each other. Then he thanked the Primary leaders and told the ward about my medical crisis. After crying about the children, now we were all crying again: the Bishop, my parents, and so on. I was sitting on the stand and seeing everyone cry and mouthing me words of encouragement to me was hard. Maybe they were just saying watermelon over and over, who knows, it looked like encouraging words to me.

So I didn't get translated with the kids during the program. Which was okay because then I conducted in Primary and read all the positive comment cards the congregation had filled out for the kids. After a Primary program, the children are balls of energy that I just soaked up.

Later that night, another one of my aunts and her husband came over to help my dad. It was nice to see them and be reminded again of how selfless and loving they are, and fun too. Also, Sunday continued more outpouring of support from friends and family. I am feeling like this was a great way to begin a week that will be so tough.

Mary Poppins Strikes Again

We told L and C they could stay home from school on Friday and R offered to stay home from work. L and C both felt they needed to be with their friends. I told R I would call him when I knew when the oncology appointment was. Meanwhile Baby and I watched cartoons. Nausea from my liver problems made it hard to eat anything, but I made a green smoothie anyway.

My Aunt came up (the same aunt who came in Feb and brought her Mary Poppins neverending bag of family history stuff.)  Baby and I went outside to meet and her and I kept thinking I heard my parents driving up. Seriously, I made her stay outside a long time and I kept saying, "Oh I think I hear them." Finally, we went inside and played play dough with Baby. My family doctor said the Huntsman was not responding to them so I called my oncologist's nurse and my doctor's scheduler. First I went in another room so my aunt did not have to hear me get tough with them, and set up an appointment for 5pm. I let R know.

I was having a hard time completing sentences and kept forgetting things. My aunt had a good idea to call my other aunt in CA and talk to her. So we called and told her the technical stuff my doctor gave me. She was a good resource and explained things more fully to us. She also talked to an oncologist she worked with and let us know some of his thoughts. This was nice to hear while we were waiting and they told me my forgetting and confusion was the shock. We kept shaping play dough with Baby -she really really loves play dough. My aunts were great emotional support at that time.

Then my parents came and we cried again. It was sometime during this day that my two aunts decided to do the family support coordination. I kept itching so another one of my aunts brought me some lavender oil and it was wonderful. Yes, I have many aunts and they are all awesome! My kids came home and we all got settled. Also during this day, I started using the "Cancer Card" to get out of doing anything that I was too tired to do. In addition, I used it to forego doing anything unpleasant like take the trash out, dishes, change Baby, tell Baby no, and so on.

R came home and and we went to the doctor. The doctor started out by saying it was a very serious situation and they had considered checking me into the hospital when we came and starting everything that night. Instead they decided to start everything on Monday. I told her about being Primary President and having the Primary Program that Sunday.(Just a note - they had decided to do it on Monday before I told her about Primary.) She told us that my liver failing so fast was not a good sign. On Monday they set up an endoscopy to look and see if there was an obstruction or clogged tubes and if so they would put in a stint to start my liver working a little better. Then I would also start chemo to attack the cancer that metastasized to several spots on my liver. If the chemo works, it would extend my life and stop the liver from failing. I would continue on the chemo the rest of my life. She had a patient last year in my same situation and she had a protocol that worked well for her and this patient was still alive. She told me to not worry about exercising anymore and to focus all my energy on my family. The doctor said the next few weeks would determine what road we would travel. At the end, she gave us some prescriptions for pain and itching.

Meanwhile, my awesome aunts were consulting us about what we needed and starting the email chain to end all email chains. We went home after the doctor and talked to our kids and parents again. There was more crying.

The next morning, a miracle started happening. First, there was an overwhelming humbling response to the family email chain. I cannot overstate how much the families were pulling together and lifting our burden. The next miracle was that my pain was not so bad. I took a painkiller on Friday night and I did not need one all day Saturday. I decided the love I was receiving from those around me was helping the pain. Thank you so much! It was a day of much planning and crying. Actually, we designated my dad to be the crier.

L and C went to a church youth activity and then C and Baby played with friends in our yard most of the day. Our neighbors have told their kids now that they can ask to play with our kids, but they can not come inside. All my kids needed the break. At one point we looked out and Baby was pushing around 4 or 5 older kids on the merry go round over and over again. When she came inside she told us how mad she was when the other kids tried to takes turns to push, because she just wanted to do it. L texted and had some friends who came up too.

My sweet Primary presidency members came over and visited and cried with me. The Bishop brought a group to assess our needs. One of them was the RS president who wondered who would park their big truck and trailer in front of our house. We let her know it was my dad. The Bishop asked if he could share our news with the ward and I said yes. I let them know after the Primary Program I would be focusing on my family. Also, the Bishop said he would ask the stake president if my dad could park his truck and trailer at the stake center nearby. (He asked and it is fine.)

We went to bed knowing we were loved!

This Doctor Appointment Did Not Turn Out The Way I Thought It Would

Last Thursday the pain I had in my liver was intolerable and R convinced me to go to the doctor. I thought I was just doing the wrong stretches or something. I wanted to go to Urgent Care but he suggested I establish myself at a family doctor. I set up an appointment  and took Baby with me, despite R's insistence he come too and I get a baby sitter. I thought it would be a quick appointment and I would get an antibiotic and go home.

Instead the doctor was very concerned, immediately told me I had jaundice, which was why my skin was yellow and the cause of the constant itching from the bilirubin underneath my skin. Then she told me I needed more tests at the hospital next door. By this time L was home and I asked if I could run Baby home. The doctor said no, that I needed to go to the hospital immediately and have a CT scan and blood work done.

I texted R and asked him to meet me at the hospital. He met me while I was filing out paperwork for registration. There were so many little things like the fact they could not get our insurance to go through,telling me I did not need to drink contrast fluid and then I did need to, or the multiple sticks with too big of needles to get the CT scan IV when I clearly told them I had small veins or when they thought I did not need to do blood work, and when I asked them they told me since I was under 50 I did not need to do blood work, but I insisted so when they checked again they found out I did need blood work. The blood draw meant more sticks into an arm that was not expecting it.

At this point R had taken Baby home with him to take L to piano and C to merit badge class. I was emotionally done being at the hospital and still in so much pain. Finally at the blood draw station and young man named Sam came in. He looked just like my relative Sam Slade and he took seriously the multiple pokes in my arm. He gave me a heat pack, massaged a vein, used the smallest needle, effortlessly found a vein, and slowly drew the blood needed. The whole time he was being kind and friendly and professional. It was the highlight of a confusing afternoon.

Exhausted emotionally, hungry, thirsty, and still in pain I went home almost 5 hours after I started at the doctor. I quickly grabbed a bite to eat, looked up gallbladder obstruction on the internet (what the doctor had told me they were considering), drank lots of water and went to Stake Primary Training with my Primary Presidency.

While undergoing the CT scan and blood draw I had asked them when the results would be sent to my doctor and they suggested she would get them in the morning. Halfway through the training meeting R exploded my phone with messages saying the doctor wanted to meet with us right away and he was on his way to the church to pick me up. So I made an ungraceful exit from the meeting, and walked outside as R pulled up. My parents who were on their way up to our house, to attend the Primary Program this Sunday called and said they would be here sooner than expected.

The doctor told us she was sorry but the CT scan had picked up multiple spots of cancer on the liver and that was causing my problems. Then she offered both R and I multiple prescriptions of Ambien, oxycotin, whatever. We were both completely shocked and looked the part. We wondered how to tell our kids AGAIN. The doctor promised her office would call the Huntsman Cancer Center and my oncologist in the morning and set up an appointment.

On the way home we called my parents to let them know what they were expecting when they rolled into town. My mom's brother had recently passed away from cancer and I was especially worried about her. Then when we got home we brought our kids upstairs and told them the devastating news. L and C were both distraught and understandably crying. Baby was wondering why everyone was sad. I suggested to C he get a blessing of comfort from his father and he said he would like that if it was not too selfish of a request. We reassured both of them that we would support them in what they needed to do to help deal with the news. C emailed some friends from NV and Camp Kesem. L texted her friends.

I called my siblings and R called his parents. In my extended family there had been some ongoing traumatic life threatening events. My immediate and extended family had been praying and caring and loving those family members, and staying up to date through email. I called one of my aunts and asked her to come emotionally support my parents next day, knowing I was too shell shocked. She was dismayed at my news and sent out a loving email to the rest of my extended family that night. I slept fairly well using some pain killers that night, only emotional pain disrupted my sleep. Baby did not sleep well. She ended up sleeping in our bed between us, despite R's best efforts to help her settle down in her room.