Question - What do you do when your baby's diaper explodes all over your clothes?
L left in the morning to play with a friend. While she was gone Baby had diaper problem that needed a complete outfit change, and a bath. Then I had to change my clothes. The scarf I was wearing matched my dirty outfit, so I changed my scarf too. Later L came home and noticed I was completely different than when she left.
Later that night, I was scratching my head with my scarf mostly off. C said that my bald head was scary to him. L said she thought so too. I told them I think I just found out what I need to do when they are fighting.
Last time I went to chemo I was talking to my husband on the way up about my kids have a limited idea of how it looks at chemo. Here is my attempt to help them visualize it better.
from msneny.empireuro.org
This picture was the closest one I could find that looks like the infusion room I receive treatment at. There is even a light blue chair like the middle one, that everyone calls the hard chair and avoids. Friends or spouses can sit in open chairs or on one of the few stools like the brown one in the picture. For some reason my husband does not enjoy sitting on a backless stool for 5 hours. Actually I get up and walk around as often as I can even sitting in a comfy chair. There are about 20 chairs packed together against the walls. The only place without chairs is the doorway and the busy nurses' desk like this one. The one window looks out over the parking lot and towards the mountains. Each patient has their own iv pole with their various bagged combinations of chemo drugs and side effect medication hanging off the top two hooks.
The prints on the walls are of the inspirational variety, like poems and sayings and baby kittens hiking Mt. Kilimanjaro (okay maybe not that last one but you get the idea). There are books and magazine and goodies (mostly sweets) to eat on side tables. I have a hard time eating or drinking during chemo, but it is common for patients to have a lunch date with their spouse or friend while having the infusion. The nurses pass out pillows or blankets when requested. They do not have a wide screen tv, but the do have portable dvd players with earphones and a movie library to borrow.
My husband and I were trying to decide which nurses have higher status there - the ones on the doctor side or the infusion side. Do you start out in the infusion room and work you way up to the doctor side? The only reason we think it might be that system is the infusion room nurses always call this one nurse on the doctor side when they have a hard time getting a vein, or a question about a side effect they are not familiar with. It is amazing the amount of patience, kindness, and knowledge those chemo nurses have. I think L would make a great chemo nurse, she could learn all the different combos and side effects, and still be gentle with the patients. I was surprised that a nurse who I only talked to for 5 minutes the first time remembered me. Then I realized I stand out a little bit, being 30 years younger than most patients.
My parents went home today, and no we did not let them take Baby with them. I think we mentioned before that we did not make Christmas goodies this year. We got little angel ornaments and attached this quote to them.
God does notice us, and He watches over us. But it is usually through another person that He meets our needs...So often our acts of service consist of simple encouragement or of giving mundane help with mundane tasks - but what glorious consequences can flow from mundane acts and from small but deliberate deeds. ~ Spencer W. Kimball
That sort of explains our Christmas. Many people did mundane acts for us, that helped us know God does notice us. Of course several of the repeated mundane acts were done by my parents - changing her diaper, refilling the formula dispenser, helping L with her puppet, fixing the windshield washer, talking to C about Pokemon, doing the dishes, and doing the laundry over and over again. They were not the only ones offering an encouraging word, making meals, and doing little things to make our life that much easier.
Today when I was making lunch I was looking at the flowers my visiting teacher brought over on Christmas Eve. I was surprised to think that I have had fresh flowers in my house since the double mastectomy. For months now every few days to a week, someone drops off flowers. Yes, some even came through a shady looking website used by Californians. The flower arrangements have all been so beautiful in their own unique ways.
There has been a significant reduction in bone pain this time. Two factors contribute to that - one is the increase use of painkillers, and the other is the heated blanket. My family is glad, especially L and C, about the less pain. It looks like we have found a better way to manage that makes it easier for everyone. This should help when my mother-in-law comes in January.
We have been doing an advent calendar as a family. It is from the 1989 December New Era. We like it because it has songs to sing each night with the scriptures. Next year though I will make the papers smaller to fit better in the drawers. Right now they are crammed in there so tight it is hard to open them.
Last night my dad came up. L and C hid from him when he came in. C started giggling right away, and was easy to find. L was hidden for at least half an hour. Baby just watched.
Baby also showed off her rolling over trick. My husband said, "She just does it in one fluid motion." Of course we think her rolling over is the best rolling over any baby has ever done before or will ever do.
Two of my younger siblings were married at Christmastime. For one of the weddings I was pregnant with C and the other C danced all night. I was talking about the dancing all night one recently with my kids. C said he will dance at another wedding, but probably not the whole time again.
Last night when I went to the YW activity a coyote ran out right in front of the minivan. I was glad I was not driving. The driver narrowly avoided hitting the silly coyote. We hear coyotes sometimes at night. Occasionally we are lucky enough to find the remains of a meal in our front yard.
On the way to the cancer infusion center today we saw wild horses by the side of the road. We used to get wild horses chomping on our front yard grass all winter. They seem to have found more pleasing food in a pasture further away.
I know these wild animal sightings are nothing compared to the fierce determination of the wild javelinas in Arizona. The coyotes and horses never get into our trash, and both gallop away when we pull up into our driveway.
I had a hard time being motivated to go to chemotherapy yesterday. I remembered all the time I went before and yet the cancer still came back. My mom was here, my friend had set up another movie party for the kids, and my husband had taken the day off, and I still did not want to go. Luckily I am at that point in my life where I do things I do not want to do.
Last time I was there I noticed they posted other patients' Christmas cards in the office. Since I think ours is so nice, I wanted to bring it in. There were many more Christmas cards than last time, but only one other one that was a picture one like ours. The non-chemo side went faster this time. I also had put numbing cream on before I left the house so I only felt pressure when they put the big thumb tack into the port. The doctor was hopeful again, and he was there. Some of the other doctors had already one on vacation. Then we went to go wait at the chemo side. We noticed a couple had been waiting there awhile and asked them how long they had waited. They told me about their full schedule of doctors visits they had that day for the two of them and how now they were behind. The nurse came out to get us and I brought up the point that this other couple had been waiting longer. The couple chimed in too. The nurse agreed to check on it, and brought them in soon after.
Scarf I wore to chemo
The chemo room was buzzing. As we sat down a lady who had breast cancer and her husband has brain cancer told me she knit hats and asked me if I wanted one. The first two were a little too mature for me, but the last one was appealing. I thanked her. People are always starting or finishing treatment, and since I was there five hours I saw most come and go. Every person when they left said, "Merry Christmas everyone!" Then all the patients who were awake and support spouses like my husband would say, "Merry Christmas to you too!" Usually there were about twenty people in the room shouting holiday greetings. When I left there were only two other people there, but I still told them Merry Christmas. There was also a rowdy cowboy there, who comes in for treatment from an even further distance than I do. He came from about 3 hours away. There is also a dutiful daughter about my age who brings her dad. They always sit in the same place and she brings her own chair, gets him a blanket, reads while he naps and so on. I brought my loving warm quilt.
My husband left for awhile to do some last minute shopping while we were in town. I took that time to become better acquainted with the patient and his wife beside me. We shared our chemo regimens and side effects. Of course we talked the most about our families. Right before my husband came back he finished treatment and so he took down my name to put on his church's prayer roll. Then he prayed for my family in the quiet corner of the chemo room. It reminded me again of how almost every interaction I have with a chemo nurse, doctor, or patient leads to some sort of discussion about God. After hearing about my situation a nurse, doctor, or patient always says something about trusting in God. Then I talk to them about my feelings about faith, and the blessings I recognize in my life right at that moment. It just seems easier to for me than it normally is to share my feelings about something so personal.
Tuesday, December 21, 2010
My favorite part of the First Presidency Devotional was the Mormon Tabernacle Choir singing, and the three talks. There is a cute woman singer we always watch for. She's the greatest! One of the many inspiring songs that they sang was “O Come all Ye Faithful.” Then we sang the same hymn on Sunday (the Sunday before Christmas how surprising). Last night at the Family Home Evening we went to, the person giving the spiritual thought quoted from it as well. In my lesson on Sunday about righteous traditions I had the girls read from 3 Nephi about the Nephites being faithful in the traditions of their fathers in believing that Savior of the world would be born. It is inspiring to me that they kept believing even though they were threatened with death. My favorite scripture in that section is 3 Nephi 1:8
But behold, they did watch steadfastly for that day and that night and that day which should be as one day as if there were no night, that they might know that their faith had not been vain.
I love how it talks about their steadfast faith. Occasionally at this time of year someone will try to talk to me about how they saw on television that there really was no birth of Jesus Christ. As of yet, no one has threatened to kill me when I say that I still believe that He was born. I also know that, like the Nephites, my faith is not in vain.
This past week as I have walked by the box of Christmas stuff. My stocking kept leaping off the stocking pile and falling on the floor. My grandma made me and those she loved these red and white stockings with our names on them. She passed away many years ago. She had cancer too.
As one of the older grandchildren in my family I remember her. I know that she loved all her grandchildren very much, because I have felt that love. A few years ago my aunts made a read along cd rom. It had her voice and illustrations from the book. She does not just read the book straight. Her personality comes through as she gently asks the kids if they have washed their hands before touching the book, comments on the silly actions of the characters, and so on. I put it on the computer for my kids and it was like a glimpse into eternity to see how they got so caught up in her presentation of the book that they would answer the questions she would ask.
In between the cookies and the chemo quilt was a stocking for my husband. Not just any stuffed stocking, but the family pattern stocking in red and white. He is often, I would not say neglected, but it is just harder to know how to support him. Last time I had cancer I asked my brother to specifically call and talk to him, because the calls were almost exclusively for me. It touched both of us that they would remember him in this way.
Of course by the time we got all the way through the box I was crying. Instead of that day being the "Day I Lost My Hair" it was the "Day of the Christmas Box of Love."
In the top of the magical Christmas box was dozens of sugar cookies. Not only were there homemade sugar cookies carefully wrapped to prevent crumbling, there was also everything you would need to decorate them. They came at the perfect sugar cookie decorating time, the week before Christmas. They are delicious and soft, and my cousins did an excellent job of making them.
In a neat twist the cookie cutters they used are just like cookie cutters that we have. We have decorated and ate them, and decorated and shared them. What a thoughtful gift!
In November when I had chemo I was a little chilly, but I had my coat. I remembered that I had a small quilt that a friend made in 2005 when I had cancer the first time. Actually she made 3 quilts, one for me, L, and C. As this chemo was approaching I considered that quilt and a number of different quilts, blankets, afghans. There was the giant blanket with many pretty colors one of the Young Women knit for Baby. Surely Baby would not need it for awhile. She has so many other blankets. I have a retro colored afghan that came from my great grandmothers' house. There is the really warm blanket my sister brought back from a trip to Mexico. I knew the new king size electric blanket from Henderson would be a little too big.
It was something I was thinking about, but not worrying about. Eventually the right one would present itself. On Friday the right one came from Utah in a box through Idaho.
Some of my aunts and a few of my cousins sent their love and hugs in a blanket for chemo. No wonder I could not decide on the blankets here. The right blanket was not here yet. The card that came with it said "The cross stitching stands for love - like when you put your arms over your heart in sign language."
Wow! I took it out of the box, and held it and Baby at the same time. It is soft flannel, and she kept snuggling into it over and over again. I like to think she could feel the love too.
The blanket was at the bottom of the box of magical surprises.
The last week of school before Christmas break usually runs at breakneck speed. There are class parties, special projects, teacher gifts, booster activities, baking, and still homework. I like to be involved in all those things with my family. This year we simplified.
I was planning on scaling back my involvement anyway. I like lavishing attention on Baby. It is such a short amount of time I have with her before she goes to school.
Family history is one of the few things that I think I am still involved in as much as I would be if I did not have cancer. I mean I did limit my involvement in the book editing and helping my extended family, but locally people still ask me for help every few weeks. These kind people do not need research help (I am not the knowledgeable about that), but just figuring out how to get their information in the new Family Search (I can help with that). Last time I had cancer I was not that involved with family history. Then one aunt told me another aunt said I would be one of the first ones in our whole extended family to be able to get on the new Family Search website. I was excited to see what that was all about. The excitement just stayed even, I am finding out, through cancer.
My cousin, Rachel, was born on this day, almost a year before I was. Last time that I had cancer she came out and helped me, because besides being cousins we were the best of friends. Her husband helped take care of her two small children so she could visit. We enjoyed ourselves immensely while she was here. Rachel was a drive herself eight hours to jump on the trampoline with the kids kind of person. On her drive home she was killed in a car accident. It was devastating.
Right now Baby keeps looking up at me, because she knows something is wrong. Baby is named after her.
When we found out the cancer returned I felt like I had failed her. All that happened and I could not even manage to stay cancer free.
Wait - I did not want the cancer to come back anymore than I wanted her to die. Blessedly I realized that as soon as I said it aloud to my husband. I am often my own worst enemy.
After the failure feeling left the more familiar missing her feeling came. It would be nice to be able to tell her things and then hear her replies. Right now our communication is often one sided.
Last Tuesday at the YW activity one of the other leaders said, "I think all the Beehives are getting taller, and may be taller than you." So of course I had to stand back to back with them to see if indeed they are taller than me. Some are and some are close to being taller. I thought of Rachel and how I always thought and she did too, that I was taller than her. It was not until months after living together that we stood back to back and realized that she was taller.
L told us recently about how they learned about the Sydney Opera House at school. It reminded me of how much Rachel loved the people on her mission to Australia. I had to get married during that time so I would have someone else to hang out with. My sister and my cousins sent letters to Rachel keeping her up to date on their opinions of him.
At General Conference time I told my kids how we slept in line outside the Tabernacle to get into the balcony for General Conference. Rachel drove her car and I brought my little hymnbook. We ended up sleeping by some people she knew from Orem. One them was a boy, who also sat by us in the balcony. Rachel bravely took the seat closest to him.
After the blessing of Baby we had a luncheon for family back at our house. We had Hawaiian Haystacks which was a throw back to the reunion Rachel and I raised the bar on family reunion meals. Along with her mom we had a theme to our meal with decorations, and favors based on a luau. I brought L and C and she brought A, and neither of us brought our husbands.
It is uncomfortable for me to tell people I have cancer. I would rather keep things on a lighter level, not a life threatening level. I know however uncomfortable it is for me, it is often even worse for the people I tell. I have had the most time to deal with it. Telling people feels like lobbing an emotional grenade in their direction and hoping it does not blow up near them. It is rare the person who is emotionally fortified enough to withstand the initial blow in a graceful manner.
When I told the nurse Baby was on formula now due to the double mastectomy, I knew she was expecting an answer like, "I am starting to work again." I wanted to shrug my shoulders so I did not have to lob the emotional grenade. In an ideal world she would have reacted in a more professional manner. It was not our regular nurse, so I have no idea of her background or anything else that caused her to react the way she did. I do know I was uncomfortable telling her and she was uncomfortable hearing the answer.
Baby did regress. We knew that before we took her to the doctor. I felt guilty before I took her in. I felt guilty she is in her car seat more than L and C were. I have felt guilty about not cutting her fingernails often enough. My mode of mom guilt is -feel guilty, see if there is anything I can do about the situation, if there is do something, if not move on. When the doctor said she regressed, the way she said was more in a reassuring, this is normal in high family stress situations, kind of way. She also pointed out how Baby was ahead in some ways. Actually the areas she regressed in were areas Baby was advanced in before. I am sure the doctor has probably never dealt with this specific type of situation before, almost no one has. She was just trying to help by saying Baby regressed not due to developmental delays, but the family situation.
It is my belief that Baby came ready for this situation going on in our family. These are some of the reasons why I feel that way. She took the bottle the first time we tried it. She started giggling and laughing early. She is the most even tempered child in our family. She started recognizing her parents as her primary caregivers before she started having other primary caregivers. I think she was prepared to regress in the time after the mastectomy and before the chemo. She became advanced in some areas, regressed in those same areas, and now is not behind as compared to other normal children. It could be so much worse for all my kids and us. It is really amazing how well everyone is actually doing. I know it is because we have so much love and support in our lives that help us carry this burden.
Yesterday was the ward Christmas party. L was an angel and C was a wise man. I originally thought I would be too exhausted to go. I was tired, but wanted to see my kids in their parts. There were two angels and I coordinated with the other mom. She brought the white robes, and I brought the gold star garland for the waist and hair. C wore his Harry Potter robe and some fabric on his head. He wanted to wear his Harry Potter glasses too, but I discouraged that. L brought her friend and they decided they were too cool for Santa this year. C was a little disappointed Santa would not let C sit on his lap. We did not even try Baby. She was taking her bottle during the time Santa was there, and not interested in much else.
We had ward conference today and our Bishop quoted from a 1998 conference talk by Sheri Dew about the Holy Ghost. This quote stood out to me.
The Holy Ghost enlarges our minds, our hearts, and our understanding; helps us subdue weaknesses and resist temptation; inspires humility and repentance; guides and protects us in miraculous ways; and gifts us with wisdom, divine encouragement, peace of mind, a desire to change, and the ability to differentiate between the philosophies of men and revealed truth.
I know that before the pathology report came back confirming we had cancer, and in the first few weeks we needed and received divine encouragement. I told a friend during that time we could not possibly have cancer because I could not see how it would work out. The divine words of encouragement said it would and started to show us how. It seems like such a simple thing, but it was essential. It helped us remember that "the Lord thy God is with thee withersoever thou goest," applies to homes in the middle of nowhere and doctors' offices an hour away and everywhere in between.
My parents stopped by yesterday bringing love and care from Henderson. It is not a small town anymore, but my family is still part of a close knit community. We are so grateful for all their support to our family, even though we don't live in Henderson.
The town I live in now reminds me of the Henderson I grew up in, seeing everyone at Smiths, trying help each other by giving rides or whatever is needed.
One neat Christmas tradition growing up in Henderson was that Santa Claus would come to our house and visit with us on Christmas Eve. He would pass out candy canes, and say he would be back later that night to bring our presents. He even visited our family the year we moved to a new house.
Last time I had cancer my hair fell out. The way it fell out was distressing to me. I would be holding one of my kids or helping them get out of their car seat and big chunks of my long hair would fall out. After a day of that I had my husband buzz it. When I learned my hair would fall out again, I knew I wanted to have a different experience. Fourteen to twenty one days after chemo my hair should fall out. I went to the hair salon this week and got my hair cut short. I donated the rest to Locks of Love. One of my friends came with me to help with Baby. She slept through the whole thing. She woke up at the end and smiled at everyone. Of course if I had not brought a friend she would have been awake and fussy the whole time.
I took Baby to get her shots this week. She is now 16 lbs 6 ounces at 4 months. She is the 90th percentile in weight like L and C always were. Last time I was at the doctor was right before I had the lump removed, when we were still hoping it was not cancer. They asked if she was still exclusively breastfeeding. When I answered she was only on formula now, the nurse asked what prompted the switch. I knew they would ask, and I was hoping for the nurse we usually have. Instead it was a nurse I had never seen before. I thought about responding with a non answer like shrugging my shoulders or something. Instead I said, "I had a double mastectomy, so I can't breastfeed her anymore." She put her pen down and looked at me. I continued, "I have cancer so she needs to have formula now." She looked uncomfortable, wrote down what I told her, and left.
Baby's doctor is more familiar with my history. She asked several questions about chemo and who took care of Baby during that time. I assured her I had nonsmoking caregivers. She checked Baby who is doing fine, and a little ahead in some areas. In a few specific areas the doctor thinks she regressed due to the stressful family situation. These are areas Baby was working on right before the mastectomy. Baby was very anxious around the doctor, and she said she thought Baby would have intense stranger anxiety also due to family stress. At this point I started to feel a little guilty, about poor Baby trying to deal with all that is going on in our house. I made an internal vow to help her overcome her regression better. Then the doctor talked about introducing solid foods. I said we would probably do that very slowly, and not at all during the weeks I have chemo.
When I told Rex and L and C about the regression. They responded like I did, vowing not only was Baby going to overcome her regression, she was going to be more advanced. So now we all are focused on helping her regain the skills she lost.
The next few days I had appointments and I was worried about the intense stranger anxiety. Baby responded by acting charmingly with all who held her. She prefers those she knows best, her family, but she acted comfortable with others. Then she scared my husband and I by eating much less than she normally does. She did not act sick, but just refused the bottle more. Today she is eating normally again, so maybe it was just the shots.
Sunday and Monday were tiring. I get bone pain with the shot I have to help prevent infection. I was trying to describe the pain to my husband. It sort of feels like your bones are trying to stretch from inside the bone out. I am not sure he totally understood, but I know he understands how it effects me. Anyways that combined with tiredness leads to confusion for me. I told my kids yesterday morning, that if I say I do not understand what they are saying it's not them it is me. Tuesday the bone pain dissipated quite a bit so I felt exponentially better so I went to YW activity. I came in 2nd place in musical chairs.
I dropped the kids off early and drove up to see the doctor. He said everything looked great. We also discussed how to manage my pain better. It is crazy that when you have cancer you take drug A to deal with the side effects of chemo, then take drug B to deal with the side effect of drug A. I drove my family crazy looking for my old electric blanket to warm my old bones. My husband helped look even though he claimed he did not know we had one, as he had never seen it. It has been years since I used it last. We never did find it, so I got one on the way back from the doctor.
Mu husband has to be the most kind patient person ever. Who else could go from a hormonal sleep deprived pregnant wife, to a hormonal sleep deprived post partum wife, to hormonal sleep deprived suddenly stopped nursing wife, to hormonal sleep deprived chemo induced menopausal wife in 4 months and still be as gentle and caring as he is? I am grateful for him every day, and I know my family is too.
I told my kids that last time we had chemo every Friday night I would be DJ Jeni and would dance (I would sort of shuffle) to celebrate. Friday nights were usually the time when things started turning around. I was still tired and sore, but from that point on I would get less tired and sore. While they did not remember doing that before they certainly wanted to do it this time. We did it again this time and they loved it. Baby loved to watch the kids dance, especially C. We say this is one of Baby's favorite songs.
The chorus of this song is as follows: Gonna keep our heads up high… HIGH! Keep on reaching high… HIGH! Never gonna quit Just keep getting stronger.
And nothings gonna bring us down… NO! Never giving up gotta go… GO!
Because I know I’ll keep getting stronger.
I think it is a great song to sing along with your family is dealing with cancer, especially if you have young kids. I like the simple Ceep Vigling (Keep Wiggling or Keep Trying) concept.
Yesterday after sacrament meeting my mother-in-law went home. She was trying to beat the bad weather over the Sierras.
Sometimes when my friends would find out that my mother-in-law was coming to help with the first chemo they would say things likes, "Oh too bad your mom can't come" or "Sorry to hear that" or "Well you will be asleep most of the time anyway" or "I hope she doesn't rearrange your kitchen." I had to explain that we asked both grandmas to take turns, because we get along with both grandmas. Also I do not think she would ever rearrange my kitchen unless I specifically asked her to. We all look forward to her visits. She is a maker of sweet treats. Some of my best dessert recipes are from her. She likes to play with the kids, whether it is the WII or a board game. She listens to their stories. Best of all when we undergoing chemo she tries to give everyone TLC. I know that her care when she is here helps smooth some of the hard edges off of the chemo experience for our family.
Sometime on Tuesday when we were at the doctor my kids got their chemo boxes. They had nice letters and small items to peruse. We just used the same boxes my aunt made for surgery, because they were so nice and fancy. The boxes are clear plastic with their names in fancy computer graphic writing on top. Their cousins are great about sending letters. The CA cousins are thoughtful and cute. The UT cousins' letters make us laugh with their promises of childhood secrets about my husband. NV cousins are fun too.
My mom, the pre-school teacher that she is, put together a packet of activities based on President Hinckley's book "Way to Be" with the nine be-s. She made these to go with the chemo boxes. Each one has a picture, scriptures, activity, song, and a gift. She did this to give the kids something they could do to build their coping skills/spiritual strength. So they would not just feel like they were powerless.
The first one was Be Prayerful. They got pictures of Esther and Daniel. We read the stories from the scriptures and talked about them. My mother-in-law pointed out that those of other faiths prayed for Daniel, and that is also happening for us. I was glad my mom included those two stories, because in both despite the fervent prayers the trial is not taken away, they are just given the resources to get through it. L and C have had experiences where they pray and then find the missing book or whatever. This trial, like most of life, is not that simple. It is not going away, but we are given the resources to get through it. Though I must say it often does not feel that way at the time. If they can begin to learn that at their age instead of however old I was when I started realizing that, then I'll send my mom to Hawaii. Maybe not, but I will be super happy for them.
Thursday morning the kids go to school an hour later than usual every week. It is called appropriately enough "Late Start Day." That morning seemed to go fine I was still tired and sick, but Grandma was here to also encourage the kids. After they left we took the Baby and went into town to get my shot. Baby and my mother-in-law came into the cancer center with me. While I was in the back dealing with the kind and gentle Nurse Jen, Baby was traveling around the waiting area with Grandma making friends. I do not usually let my kids go to the cancer doctors with me for two main reasons. First is the germs they carry with them from school. Second is that it can be really disturbing for people to see very sick very old cancer patients. Baby is not looking at that though, really she is just looking for someone to smile at. Most cancer patients can still do that, and those who there were so excited to see her. Plus she was wearing her cute Mary Jane socks, like these from Target.
Most were powerless to resist her adorableness. We stopped at the post office and went home. I started thinking that chemo would be easier. I was not able to really participate in the family activities, but I could observe them, zombie like. Zombie like observation being better than zombie like curled in a ball on my bed.
Thursday nights are stressful, because homework is generally turned in on Friday. In addition, showers, and lunches being made, and jackets and clothes ready, and piano practiced, and of course a dinner in there somewhere. Everything eventually got done which was helpful the next morning.
Of course that night was awful. Then my husband left for work and Grandma had to negotiate the morning routine while I unsuccessfully tried to get out of bed. I came out right before they left and then spent most of the rest of the day in bed. Baby and Grandma had more bonding time. At one point I said I would do the dishes. I got them all away, then went to rest on the couch before putting the dirty ones in. Grandma putting them away woke me up and I just went to bed. I just wanted to believe I could put the dishes away, that I was okay. I was okay, it is okay to be really tired after having chemo.
Thursday and Friday were also harder to keep food down days. My husband just says "it tastes like chemo, doesn't it." When your taste buds die off, and you can't smell, and you are sick to your stomach, food is not appealing.
This post is about yesterday. I am a little behind.
Yesterday I still had a day full of steroids to take. The anti-nausea adds to the drowsiness and the steroids have the opposite effect. I woke up tired, flushed, and sick. My cheeks were a nice rosy red. My mother-in-law is here helping us and she was heating up cinnamon rolls a friend gave to us for the kids. After the kids got off to school, I focused on drinking as much as I could to help flush my system through. I also had to make some arrangements and appointments. Plus Baby needed some tummy time and a few books read to her. The side effects of the drugs were battling (Steroids -STAY AWAKE)(Zofran - SLEEP) but the chemo gave the drowsiness the edge, and I had to sleep. Eventually I woke up and C was home from school, but L was still at Activity Days. My mother-in-law made dinner before my husband and L came home. She got to take a little break with a few friends of mine. While on her break she picked up another stocking for us. We are filling stockings in our ward and I wanted to fill two, but L only made one at Activity Days. Then we did the Advent Calendar and nighttime routine and put the kids to bed.
Then my husband and I tried to figure out what picture to use on our Christmas card. No better time than the day after chemo right. We were totally thinking clearly on this one. Thinking back it is sort of humorous how diplomatically my mother-in-law would say, "That's nice" to any picture my husband or I picked. After the picture we had to pick out the card. I do not even remember the card we picked out. It will be a pleasant surprise when they are delivered.
My mother-in-law arrived Monday night. Tuesday Morning after the kids went to school, Baby hugged and kissed, the doorknobs, and light switches wiped down, and the hand towels temporarily retired in favor of paper towels, we drove the hour up to the doctor. They checked my vitals at 11:20am, which were good. Then we waited a bit for a nurse to punch in a thick thumb tack like thing into my chest port, so they could hook up the i.v. to that. After that was inserted without a numbing agent (I guess generally people like to have that area numb, but I did not want to wait for it to get numb), we met with the oncologist again. He talked to us about a few things, and then took us over to schedule more appointments. The chemo room was full, due to a number of unexpected delays, so they did not find a seat for me until 12:30.
When we went back there it was wall to wall people. All of them at least 20 years older than us. Many had blankets on and were asleep. Common side effects are chills and fatigue. My husband found a small stool to sit on by me. The first hour of chemo for me is all the drugs they front load into my system to counter the side the effects from the actual chemo infusion. Beyond the regular saline they put steroids, Benadryl, anti-nausea, and so on in. The Benadryl is why I can't drive myself home. My husband keep me company for awhile and then went and picked up some Christmas presents. He got lunch while he was out and brought a snack back for me. Many of the other patients had brought lunch with them, but I did not feel like eating too much. After all the side effect drugs the first actual chemo infusion took over an hour and a half. The second part took about an hour. We were the very last ones left. Others had come and gone while I was still there. It just depends on what your infusion is and how fast you can tolerate it. I can't tolerate things fast, so I just take it slow. We left about 5pm. The Benadryl made me tired while I was there, but I only felt a little run down and scattered by the end.
Also while we were there they set up an appointment for us to come back the next day to take a shot to boost my immune system. We asked if I could go in to a closer town only half an hour away, since they do not offer the shot in my town. While we were having the infusion they called our insurance and the other location and set it up. I actually will not have the shot until tomorrow, because I finished chemo so late yesterday and there is a specific time frame it has to be given in.
One of the times I was there and feeling tired from the Benadryl and my husband was gone, I looked around at all the other tired people, and I thought of all the support that I had. It was overwhelming to think about how I was not worried about my kids being taken care, how I knew people were that very day praying for me and my family. I could feel the burden lift off a bit and made me want to do what I could to help those around me. After that feeling I made more of effort to smile at others and converse pleasantly if they seemed amenable to conversation.
My mother-in-law had dinner ready when we got home, and I had a ride to the young women activity. I knew I would be okay that night. I spent some time with L, C , and Baby before I left. Then I was able to spend some alone time with Baby when I got home as I feed her the nighttime bottle after every one else went to bed.
Of course the last few days friends have been asking if we are prepared for chemo. Do we have freezer meals, is the house ready and so on. C turned 8 at the end of March. At that time I was pregnant with Baby and worried about how I would support my husband and the kids while taking care of Baby. This was very pressing on my mind. To prepare for that time I made a bunch of freezer meals. I shared my concerns with the children and we made a plan to finish all of L's Faith In God up to the 11 year old section (Preparing for Young Women), finish C's Bobcat and Wolf, and some Faith In God, and make freezer meals. They helped me accomplish those goals this summer.
Then we had Baby and while the newborn time is difficult, we did not need very many freezer meals. While were in the newborn time we found out we had cancer again. Those freezer meals gained new importance. Cub Scouts and Activity Days are just fun activities for the kids as they have no pressure currently to finish anything. Those preparations we made in the summer which we thought were for the newborn time, have made it easier to take things slowly during this time.
We had a lovely meal with friends on Thanksgiving. There were so many delicious food items, the kids played well together, and lots of good conversation. It was a very pleasant and relaxing time.
On Friday we cleaned the house and then put up the Christmas decorations. This is a little earlier than we usually do it. Often we go out of town for Thanksgiving and put the decorations up the first weekend in December. It was a pleasant day so we even got a little yard work done.
On Saturday we made some returns and went a shopping a bit. I say a bit, but we had to drive to town to shop and were gone from our house for too many hours. We came home and did some crafting, and getting ready for Sunday, finish preparing my lesson, iron clothes, and so on.
Mainly I have been trying to keep busy to keep my mind off of Tuesday. It is not really working. So today I surrendered my thoughts over. The rest of my family has been thinking about it too. Not Baby though. She is only thinking about her teeth that are starting to come in. Tonight we had another family discussion, with a question and answer period. C is glad when his friends tell him that his mom survived cancer before and she will survive again. L is trying to find out exactly what will happen. She is not satisfied with the answers we have for her. They are not specific enough. Finally we told her the first time is an experiment and then we will be better able to predict the results for the other treatments. I wish I knew too, then I could tell them and prepare them better. Right now they are just getting ready for a change they do not understand, that will make things more difficult in the short term and better in the long term.
My oncologist is a hopeful practical doctor. Every time I talk to him I think chemo treatments might be easier this time. This goes against the experience I have already had this time around. Everything else has been harder this time, but still there is hope.
I am lucky, blessed, thankful, grateful, to have so many to love. I can type this post this morning because those I love are cooking more. I look around and see those I love the most. Our house is not the best decorated, but like many others it is filled with reminders of those I love.
When I had chemo last time they talked about the importance of always showing up to appointments, especially the chemo infusions. I did not understand at first how hard it would be to accomplish that seemingly obvious goal. The more treatments I did and the more I got to know the other patients, I saw the importance of having those to love. As any sleep deprived parent knows, loving others helped me to be able to endure suffering. Patients would go through whatever awful side effects they had to, so they could be there for a grandchild's graduation, or a niece's wedding. Of course I just wanted to see L go to kindergarten, as she turned five during treatments. I know more and love more people than last time. I have more niece's weddings to look forward to, and another child, Baby, who has years before she enters kindergarten. I would more than five years between this time. I thinking more like 30 years +.
We have appreciated all the cards and letters we have received. There are few that were so funny they made me laugh out loud.
The first one had a picture of a dog on the front saying - You're Wonderful, Marvelous, Nicer than ever. On the inside it said - Thought you might like a favorable Lab report to make you feel better. Then on the back it had a picture of a cat and said - There was also supposed to be a Cat Scan, but the cat wouldn't cooperate. I was confused when I saw the front of the card, so I was truly surprised when I saw the joke on the inside.
There have been a few chatty letters that have cracked me up as well. They usually involve a hilarious description of the craziness going on in that person's life at the time.
Just yesterday a card came in the mail from an old friend. It was a homemade sympathy card for the loss of my breasts. That was a first. I can laugh about it now, but if that card had come earlier it would have been too difficult. It was just recently that I stopped feeling phantom let down pains all the time whenever Baby was hungry. Now it is more rare. Those nerves worked a little too well.
A few weeks ago on the way home from school L told me about her Heritage Project. She needed to make a pedigree chart, mark on a map where her ancestors came from, and interview a relative. They would display their projects at a luncheon of food representing the countries they are from.
This project made me so excited. She tried to tell me they could just do a simple one page sunset type pedigree chart. I asked her if she wanted to use pictures and she did, so we switched to a poster board. We had most of the pictures already and were emailed the rest. I was glad that L was able to identify more than half the pictures and put them in the right spot. One year for Christmas my aunt made a card game with our ancestors pictures on them. I wonder what happened to it, anyways L did not need the card game. L was concerned about a color scheme so my side was blue and my husband's was green. I thought it would be cool to put little facts about each person next to their picture. L and my husband voted me down. Already she had the giant poster with pictures and a color scheme, I think she did not want to do anymore work.
She had to pick a few questions off a list to ask one of her relatives. I thought many of the questions were a little too easy. I encouraged her to ask some of the more thought provoking ones and to ask follow up questions. The map that was provided was a poor copy so we found a new one and used that instead. The food was the least important to L, so she was okay when I said I would just buy a tin of Danish Butter cookies.
Her class seems to have a ton of projects due around the holidays, but this was one that I was glad she did. She called me right before the luncheon to see if I was coming with Baby. I thought it was because she really wanted me there. Instead I found out it was those with relatives were able to be in the front of the line.
After the luncheon I did a little research based on a conversation there. I saw my grandpa was named after his great grandpa Snow, who was a brother to Erastus F. Snow who helped my ancestors on the other side of my family and did missionary work with the ancestor of a friend.
When my parents where up here, my dad drove and waited with me while I obtained my old doctor records. So of course I was interested in seeing what my doctors wrote about my appointments. After initial treatment was over a pattern emerged. At almost every follow up appointment I asked about my sisters. They continually wrote, "Patient is concerned about her sisters." The funny thing is if I had not been worried about my sisters before the thousand times they asked me, "Do your sisters have breast cancer too?" would have certainly led me to worry.
Off the top of my head I think the recommendation is to start getting mammograms 10 years earlier than when your first degree relative was diagnosed with breast cancer. My nearest sister is 18 months younger than I am. Instantly she was 8 1/2 years behind in screenings. Plus mammogram images of nursing and pregnant women are not recommended. That has taken up most of the last five years for both of them. The whole preventative screening has basically been left up to them knowing their bodies well, and identifying changes that cannot be attributed to nursing or pregnancy. Not exactly the best system.
It makes me crazy thinking about it. Both of them are almost older than I was the first time I had cancer. In addition, none of us had anything close to the same type of pregnancy and birth experiences as each other or our mother. That reminds me that my mom had all her kids basically the same way, except for me. I like to think my specific life experiences pulled the trigger for me to have cancer and not them. While we have had some similar challenges in life, I could also say that about many who I am not related to. There are some challenges that my sisters have had that I will never have, and so I think the reverse is also true.
Our dry erase calendar has a ton of information on it. L has her items in blue, C has his in green, and Baby has her info in red. Then there is the black pen item. It details the things that have to do with me or my husband. He does not have many things on the board because he usually only goes three places, home, work, or church.
Last week I put "Chemo 11:15 4 hours" on the 30th. C kept walking by the board and looking at it. Later that day he said every time he sees chemo on the board it makes him sad and he wants to cry. I let him tell me all about it. When we were talking again a few hours later I reminded L and C that every time they see chemo on the board they also know a grandma is coming the day before.
Chemo will be hard on them, but I think after the first one it will be a little easier. Then they will have a better idea of what to expect and how it affects their lives. They do not really remember how it was last time. I would have chemo one day and be okay just a little goofy. The next day I was okay and would go back to get my Neulasta shot. The third day I felt like I could not get out of bed, except to throw up. That went on for a few days. Then we had a sort of shuffling dance party when I would turn the corner, and start gaining more energy. I was tired the whole next week. The third week I felt great compared to the previous two and would make a bunch of freezer meals. I am hoping that it will be a little easier than last time. I know at least it will be shorter.
Yesterday L,C, and I finished up getting flu shots, now that we will be entering the high risk group. My husband got his about a month ago. L and C had late start at school and we had an early morning shot appointment, so they did not even miss any school. They were so thrilled about that. To make it more palatable for them we stopped at the doughnut shop on the way there. We need to remember next time we stop at the doughnut shop on the way to town that we need more than L's half empty water bottle to drink. While waiting at the doctor we saw a family from our ward. There are not that many pediatricians in town, we actually see someone we know almost every time we go.
Later that day a policeman knocked on our door. He said there was a 911 call from our residence. We all looked at C who denied doing it. I asked the deputy if he was sure he had the right house because my kids were just doing homework and nobody was using the phone. He called the police station to double check and then they rang back our phone. It seems that when I laid the phone face down on the table it dialed 911 and then went on hold. The police got a 911 hang up, tried calling back and no one answered, so they sent a deputy to investigate. I apologized and he said he was sorry too, but he was just doing his job and left. My niece who is named after me, also dialed 911 accidentally recently. I heard the police were not as understanding though.
When you have cancer it is scary, because it is commonly understood that cancer can cause death. Unfortunately almost anything at anytime can cause death. President Monson touched on that when he talked about showing gratitude to those we love before we have regrets. I was reminded of this yesterday, when I found out my dad's cousin(?) died in a plane crash leaving behind his young family. Our prayers are with them.
A lady from the doctor's office called today. She said she was calling to discuss my health insurance information. She said she had good news - we have already met our deductible and our out of pocket maximum for this benefit year (it began July 1) before chemo even started. I told her I was not surprised since we had a head start when my baby was born at the end of July.
Then we talked scheduling the actual time of day for chemo. I asked that it be a little bit later in the morning since the oncologist is an hour away and I want to help get my kids ready for school. She consulted the scheduler and then got back on the phone with me. She told me they would call back, because they were asking another person if they would be willing to reschedule to accommodate my needs. They called later in the day with a good time. Thank you to whoever changed their appointment time.
When my husband and I met with the oncologist after the surgery he said I had a 30% chance of recurrence of cancer, even with the mastectomy. The chemo regimen I am doing brings that number down to 15%. He gave us other options of chemo regimens that might be tolerated easier, but we went with the one that brought the number down the most.
It looks like I will start chemo on November 30th at 11:15am. It will only be four times - once every three weeks (December 21 January 11, and February 1). I will lose my hair and the doctor has prescribed anti-vomit, so I will lose my lunch as well.
I was talking to my brother about reading scriptures recently. It brought up the memories of when I read the scriptures during my last chemo treatments. The bad thing about cancer recurring, besides the actual cancer, is too close familiarity with the side effects. With my chemo brain it made the words in the scriptures very slippery. I would lose my place several times in a verse. That made it hard to make any meaningful connection between the words. During that time I would read once verse fifteen times so I kind of understood it, and maybe only one verse a day. Even though I was not getting much from the actual text, I grew to love the scriptures more for the comfort and blessings they gave me just through the process of trying to read them.
After they took the staples out they put on surgical glue and steri strips. That seemed to be working well until I got a rash from them. The itching started about the same time my traumatized chest nerves started waking up. The combination of the two led to the most intense itching of my life. I felt like perhaps I had given up the narcotics too early. I called my surgeon, and painfully described what was going on. He suggested lanolin lotion. Luckily I had not thrown out the Lanisoh from when Baby was born. My scars seem positively wonderful now that they are not rashy or itchy.
I was waiting for information and kept thinking I would wait to post until after I did, but I will just write some posts with what we have right now. I read something once that said most people who have cancer cite increased patience as something that going through treatment helped them develop. I wonder why that might be?
After I had a hard time putting a ponytail in my hair I realized maybe those muscles were not getting a good stretch in my other exercises. I added ponytail hairdo to my exercises and will do one in my hair everyday until it is easy to do or my hair falls out whichever comes first.
My left arm is doing fine. It does not hurt, and I only feel a very slight pull when I reach for things. I try to use it more to give my right arm a break. I have even started practicing writing with my left hand to relieve the stress of signing my name on checks. Okay not really about that last part.
My right arm still bothers me. It does not fit comfortably against the right side of my body. Also it has a hard time reaching for things. This arm feels like it pulls when I do almost anything. This is also the side they took lymph nodes out on. The underside of my arm still gives me pain. I usually use wheat bags to alleviate the pain. The problem with the wheat bags I have is you have to be fairly stationary to use them. So I bought some of those wrap bandages that heat up to use instead.
So far no swelling of either arm. I feel like I can do most things right now. I am just not that fast at doing them. Holding Baby against me is easier than balancing one thing in each hand as I carry them to the table. I have a better idea now of how frail old ladies can hold babies securely, but have a hard time putting on their coat.
L and C have been extra helpful and kind this week. I do not think they even realize the visible change in their behavior. They all of the sudden started seeing ways to help and doing them. In addition, they have mainly been doing things the first time I ask, and if not then they are apologizing. Their fighting has been reduced and they have both been really trying to help more with Baby. L is getting ready on time in the morning without reminders. C is giving spontaneous hugs more often. I was thinking maybe my husband talked to them, or perhaps my parents. I asked them who talked to them about it and they said no one. Then I asked them if they noticed anything different in the last week, and they said no.
I have been thinking about it the last day or so, pondering what prompted the altering of their actions. Today after lunch I asked them, if they felt comfortable, if they could tell me what they fasted for. They both said, "You, jinx, 1,2,3,4,5" then L said "Stop." (The jinx thing is something they do when they say the same thing at the same time.) Then I realized what caused the change in their behavior.
I had a conversation with my neighbor about the drains. She asked if I ever wondered about the first person they tested drains on. Then she reminded me that often it was veterans who were the testers of many medical advances, especially those relating to war injuries, like prosthetic limbs. I am thankful for their and their families' sacrifice both in battle and at home. Yesterday at L and C's school they had a breakfast and had the students invite veterans to it. Then the veterans went in the classes and shared their experiences. Based on the detailed explanations at dinner from L and C of whose grandpa was a spy and whose dad was a paratrooper and so on, I think it was very meaningful for them.
Thinking about medical advances and studies reminded me that my family and I are in a long term study of breast cancer in young women. It is through the Siteman Cancer Center. They did genetic testing on my parents and I. The requested 6 vials of blood from me as well. Even though I have small veins, the most difficult item for them to obtain was my medical family history. When they called to get the information they freaked out a little when I told them I had 5 siblings. Then they started to ask about my dad's family. He has 8 sisters and 1 brother and they were surprised I even knew all their names. In our discussion we concluded that it would be more efficient for me to obtain the information they desired and then email it to them. I ended up sending them a color coded spreadsheet with all my siblings, nieces, nephew, aunts, uncles, and cousins on it and what health issues, if any, they had. I also sent a four generation chart with the cause of death listed for each person. I am young enough that the conclusions they come to might even help me in the future, in addition to my daughters.
Last time I had chemotherapy I had 6 infusions 21 days apart of taxotere, adriamycin, and cytoxan. Every drug has its own side effects. One that adriamycin has is heart damage. That damage is the reason there is a limit on how much you can have in your lifetime. The limit is based on your individual body surface area. I had the MUGA test to see how much damage adriamycin caused for me. I thought it probably caused very little, because I had exercised regularly in the years between the two cancer times. One type of exercise I did one year was jump rope for 20+ minutes 4 or 5 times a week. I thought if anything jump roping would show heart damage. Besides exercising I went to week long Girls' Camp in a higher elevation and hiked around for two years with no problems. When I saw the doctor on Monday he said that the normal heart range for the MUGA test is between 55 and 65 and I was at 56. I was already close to my lifetime limit of adriamycin based on the dosage from last time, but with the results of my MUGA I know that I will not be having adriamycin again. I need my heart for 50 more years. I am glad that I did not know where my heart function was before because I would have had different expectations for myself. Now I know that even though I have a 56, I can still do all those things.
Last week was parent teacher conferences. I was probably too tired to go. I brought the stroller for two reasons. One was I knew I could not bring Baby in her car seat (too heavy) and the other was so that I would have something to lean on as I walked. Both L and C's teacher said I could do phone conferences or have no conference at all if I desired. I just wanted to show L and C that I still cared about what was going on in a big part of their lives. The teachers were very accommodating and responded positively to my email request that the conferences be back to back.
The day of their conferences C asked if I was going to bring Baby with us, because his teacher wanted to see her again. Since Baby was born I have only been in the school twice, once before school started to visit with his teacher from last year and the other time for Back to School night. Both teachers were happy to tell me L and C are doing well in school, and both wanted to hold Baby. L and C's teachers talked extensively about their writing. The school has school wide writing prompts and guidelines. In October they were supposed to write about a time they felt afraid. When I heard this at the first conference I was a little concerned. I was nervous because usually they talk about what they write about, but they had not mentioned this topic. Apparently L and C both have had other times when were scared, in addition to the current fear they feel. Both of their teachers praised their voices that showed in their writing. It was a good reminder that they have been afraid before and gotten through it.
The last Sunday in October our Bishop suggested three families to fast for our in our ward, us, the family with the boy still at Primary Children's Hospital, and an older lady. It is humbling experience to go to Fast and Testimony meeting where people are fasting for your family. Our ward is really small right now. A few times our Bishop has suggested we fast for people to move in. This last Sunday not only did we feel strength of the ward fasting together, but also two new families showed up at church.
My dad's family has a family newsletter that anyone can contribute to and is updated at the beginning of the month. It is always enjoyable to read the articles and family updates. Two articles made me reflect on my current situation in different ways.
I told a friend in my ward I had cancer. I could tell this information affected her deeply and she wanted to do anything to help. The next morning she called and told me about her favorite story from church history about the pioneers. That story reminded me I am not the first person in our family to face difficult trials and there are lessons to be remembered from their examples. Those examples of my ancestors have helped me face trials before and I can use the little bit of information I know about them to help me again.
Yesterday I was trying to figure out how I would be able to take care of Baby when I have chemotherapy. Chemo brain wrecks havoc on anything going on except what is happening in the moment. I was trying to think of the systems I would need, like now I try to write in red on the whiteboard when I or others feed her to help us keep track of her bottles and give us an idea of when she will need to eat again. I was feeling bad that it has to be this way and that I cannot take care of Baby like I envisioned. Then I remembered the legions of people including both grandmas who have offered to help with the kids and especially Baby. I am grateful that when I am facing these struggles others can lovingly help.
I tried to do my hair in a ponytail this morning. My shocking lack of range of motion made a simple ponytail into a strenuous exercise. When they took the drains out they gave me this sheet.
from krames.com
I am not that excited about doing these exercises. Before I did them for the first time I thought they would be easy for a fast healer like me to do. You can probably guess that they were more difficult than I expected. There are the three on the front, (ball squeezing, crossed arm, broom stretch) and two more on the back (wall climb and chicken wing).
To make the exercises more exciting and desirable to do I changed the names of the exercises.
Ball Squeezing is now Stress Relief. I squeeze the ball and think of other things I want to crush.
The Crossed Arm lady reminds me of I Dream of Jeannie. You cross your arms high in front of you and then pull your arms back. I think of myself being a genie and I say "Shazam" when I grant a wish and pull my arms back.
The Broom Stretch to me sort of looks like getting ready for a Quidditch match. I channel my inner Gryffindor student as I stretch out my muscles.
At this point you are probably correctly assuming that my exercise time is quite the show for the family.
The Wall Climb is when you face the wall and climb your hands up the wall and hold the stretch. It reminds me of old time movies of people feeling the prison walls trying to find the loose to break out. Thus it is called Prison Break.
The name I hate the most is Chicken Wing. Do women who just had a major body changing surgery need to refer to their arms as chicken wings? In addition, I feel the name is misleading as the exercise is nothing at all like the popular roller skating rink and wedding reception number, " The Chicken Dance". The exercise ends in a pose with your hands locked behind your neck, in a pondering position. I think of think of this exercise as Meditation and I leave the poultry references behind.
Hopefully soon doing a ponytail in my hair will be easy again.
We have been getting formula coupons. I do not know how one of my cousins got so many to send us. She's amazing! We are so thankful for the many coupons that been sent. Some people are taking a different approach. On Monday the Fed Ex truck dropped off a case of Similac Sensitive formula. It was shipped to Jeni. The customer name was VENDA01. On Tuesday another case was delivered to a Jennifer, with the same customer name. We do not know who these anonymous VENDA01 people are, or if it the same person or what. Just wanted to let you know we got them and we are thankful, and Baby enjoyed some today. I think that it was what helped her sleep from 10pm to 6am last night. She knows people care about her.
Monday while I was at the doctor being fascinated with the drains they also read me the pathology report. The expected news is that the cancer is again hormone negative and also HER2 negative. Actually the doctor said the HER2 was borderline, but read as negative. The good news was it had not spread to any of the lymph nodes.
On Tuesday I had more tests done to determine how much if any visible damage was caused by the chemotherapy I had done last time. The abdomen ultrasound seemed okay. As I was doing the MUGA test (heart scan video) the technician said it looked beautiful. I am taking that as a good sign.
Also on Tuesday, my parents left after the kids came home from school. My mom cleaned the house, and did all the laundry(bath rugs included) while my dad took me to do tests in the morning. L said, "Mom, she even cleaned the baseboards."It is a rare event when this happens. C exclaimed, "She made my bed look like a couch - yes!" We are so glad they could come up and help us out this time. The live in help, especially with Baby, was invaluable. Baby could not face them leaving so she used sleeping to avoid saying goodbye.
Yesterday we enjoyed a pleasant Halloween. I do not know if I mentioned this before, but L was a gorgeous gypsy, C was a handsome Harry Potter, and Baby was a pumpkin. We had a tasty dinner of witches brew (stew) and pumpkin shaped biscuits. L decorated the table with a festive tablecloth, place mats, cloth napkins, and napkin ring holders. She loves to have a reason to set the table fancy.
Halloween also was the day my arm and right side started talking to each other, and sometimes they did not have nice things to say. The numbness has been slowly wearing off and finally it wore off enough that I noticed again when they touched I felt it. The feeling was not necessarily a nice one, but I am still glad to have that feeling again.
The baby has been totally taken over the bottle feeding. She puts her hands up on the bottle when we give it to her, and she lights up when she sees it. The downside is if we take it out of her mouth to wipe her little milk beard off our darling angel gets very mad. She makes sounds that I can only describe as baby swearing. The first time we were surprised at the violent angry noise that came out of her mouth, but now we just view it as another part of her personality.
Today was the big day for the doctor to take the drains and the staples out. My dear husband asked me to look at the ends of the tubes and see how they collect the fluid. This made my mom interested as well. My dad did not really want to know, and I did not care as long as they came out. I thought they had come out and told the nurse I did not really feel it at all. She said, "No, that was not it. You WILL feel it when they come out." Then she had me take a deep breath and then let it out and she pulled the two on the right side out. She was right I could really tell when they took them out. She showed them to me when I asked her to, and I was very surprised at how big the white part inside my body was. It was 6-8 inches depending on the drain plus 2 inches of the tube. Here is a picture of the tube from a medical supply website.
After describing them to my husband, they reminded him of French Drains. They are used for low wet areas in landscaping and he used to work in a landscape company. Here is one from a landscape company website. I am just glad they are out and everything looked well at the doctor. Tomorrow I have a MUGA test (a heart scan) and an ultrasound of my kidneys. These will help the doctor with assessing my health for the next round of chemo.
I think actually Nevada Day was yesterday, but I know the parade is today. This post will have one awful paragraph, and the rest will be full of kindness.
Awful Paragraph On Wednesday night I took the bandages off my chest. R said he would assist me but I did not want both of us to pass out. As it was I nearly passed out and he had to help me anyway. I had somewhat tried to prepare myself to see the long harsh scars with staples in them, but it is different seeing them on yourself. The discharge instructions are clear that it is a dramatic emotional process, so we waited until the kids were in bed and my mom was taking care of the Baby. The cuts are so severe looking, which I think is good in a way because cancer is such a severe thing. Severe and harsh though are not words that I generally use to describe myself. It is hard to reconcile what I see with how I feel. What has helped is compassion for myself (was it President Uchtdorf who talked about the importance our relationships with ourselves?) and the knowledge that scars change over time. What I see today is not what I will see next week after they take the drains and staples out, or the week after and so on.
The first day I came home from the hospital I thought all the cups tasted too much like plastic or soap. My dear husband let me know yesterday that when I came home I tasted like plastic from the anesthesia mask, but he was glad to kiss me anyway. I told him I will get plastic tasting lip gloss and he can enjoy it all the time.
L and C are enjoying all the letters from relatives. They are so excited every time. Plus every letter they get C says is the nicest letter he has ever gotten. One family wrote us letters for FHE and I got a nice picture from my niece where she spelled not only her name, but mine as well.
My visiting teacher and the R.S. President brought over some freezer meals that the teachers at L and C's school prepared. Many people brought over flowers (the YW, the Bishop, my neighbors, my visiting teaching partner, I hope I remembered everyone). R claims one of them smells like sagebrush right before it rains.
Someone was acting out family history when she sent L and C a little something to buy a treat. It reminded me when MJ's grandma gave him a little bit of money, and when she was chastised for wasting her money on her grandkids she said it was one of her joys to to do that. (I think those were the people involved in the story)
A few nice ladies are encouraging my mom and letting her talk about all the crazy stuff and sent their love with her. Then Pop-Pop came up last night. He was willing to bring things up for people like the can of Similac from the neighbors. We asked him who sent the other stuff up and he said he did not know it just kept arriving at the house. Thanks Henderson! He is also a good diversion, because if he is here that means more Halloween festivities are about to begin.
Today we got our first Similac coupon. It made me cry because of the love sent with it. This coupon came all the way from Minnesota. Along with the coupon my aunt sent this adorable booties that she knit. We are grateful and humbled by the thoughtfulness.
A little more than five years ago I was an Activity Day Leader. Our ward was so big I helped specifically with just the eight year old girls. Then I found out I had cancer and at that time I was no longer able to hold that calling, my dear friend in the Primary Presidency carried that calling for me. After I had cancer I have been the YW Second Counselor (Beehive Counselor) almost the entire time since. I love all the young women, but I was especially excited a few years ago when the girls I had for Activity Days turned 12 and entered Young Women. I loved them as Activity Day girls and I loved them as Beehives. All the Young Women we have in our program now I have had the opportunity to have as Beehives. It is such a delight to see all the young women grow and progress. I am more than happy when they ask me to write letters of recommendation for them, and could talk about how great they are for hours. They are amazing in so many ways, and such an example and a light to those around them. The girls gave me so much help and joy when I was pregnant with Baby.
Last Sunday I told them about the cancer. This was an emotionally difficult thing so I had the YW President help me (see I am learning). I know of several of the different trials they have had (especially their lovely friend in the other ward who had her own struggle with cancer) or currently have in their life and I did not want them to worry about me. Looking at their beautiful faces as I stood up there, I could feel the love the Lord has for them. I am honored that both times I have had cancer that I can associate with their extraordinary spirits. This is a blessing in the lives of my family and I. They are remarkable, if anyone can have one leader have cancer and the other leader have a traumatic event with her son, they can.
Before we left the hospital they asked us if we had a recliner. When you have drains in you have to sleep only on your back and not roll on your side either. Also it helps if your arms are elevated to reduce swelling and pain. We do not have a recliner, but we have lots of pillows. I feel like I have slept as well as can be expected. They also recommend you wear soft button up shirts, because they are easier to get on. I have just been making do with baggy soft long sleeve cotton shirts.
The right side (the side they also took lymph nodes out) has been numb, and is only now starting to regain some feeling in my arm and chest. This is kind of good because it has not been in pain much and maybe is healing easier.
I had sort of an idea of how to treat my right arm because I had similar issues though on a smaller scale last time I had cancer. Both times I could not lift anything more than five pounds until after the first post op visit. Last time I did not have a 12 pound 3 month old so it was easier to obey those instructions. My mom thinks carrying the baby in the car seat from the car to the house is the equivalent of one mile walked. We might just leave the seat in the car. Of course L and C have better motor control and are gentle with me. The Baby is still developing and I hold her on my lap and feed her the bottle (with my arms supported by pillows) a little farther away from me than I would like. My mom is good about letting me do what I can and picking up the slack for all the rest of the baby care.
Yesterday I felt just well enough to be annoying. I was awake more, but could not really do anything. It was like I suddenly realized a thousand things I wanted to do, but could not so I tried getting those around me to do them, in addition to all the other stuff they were doing already. I was very impatient with myself, but my husband and my mom were much more patient with me. My behavior bothered me and I thought about it this morning and decided while it does not matter when the baby swing tray rests when it is not is use, I want it to be where it usually is because so much else has changed. We had a family meeting this morning, and I talked about my fear of so much change so fast. The kids both got into helpful hard worker mode, and I promised to look away more and accept change more. My husband and my mom are just continuing in taking care of all of us.
Maybe you can tell this morning I woke up in not the best mode. I was stiff and sore and tired, and thinking about all that is still ahead. After I had breakfast I remembered something that helped me last time - music. We listened to a few fun songs and it really helped melt those feelings away and let me focus on the good moments I am having now.
I found out earlier today that the 11 year old son of the YW Advisor who works with me (and is my good friend) is on his way to Primary Children's Hospital. His name is Ben Anderson. He has heart problems and nearly drowned last night.
Please send some of your strong faith, love, and prayers their way.
On Tuesday morning R and I traveled into town so I could have a bilateral mastectomy, port a cath placement for chemo, and axial lymph node dissection. I also had a sore throat and runny nose. After consulting with the anesthesiologist, he explained he would be more concerned with a lower respiratory infection than an upper one. Then we waited and waited, because the surgeon was running behind. The anesthesiologist asked if I wanted something to take the edge off, I honestly told him I did not need anything, I was calm.
They said we could watch tv, but we are not big tv watchers so R and I read supportive emails on his I-Pod touch. Of course we told anyone who would listen about our three precious children waiting at home with their grandma. Some of the nurses remembered me from when I was in there earlier this month.
The surgery took about 2 and half hour. I found out what cures an upper respiratory infection, general anesthesia. After the surgery I did not have sinus pain or a runny nose anymore. As I was waking up the nurse asked if I wanted my glasses on, I said not yet. R said it was because I was not ready to face reality. I heard the nurses talking before they went and got R, they said to get the husband that looks the right age (we were the youngest ones there). I felt alright when I woke up more which was good because I wanted to get home to my kids and my own bed that night. I asked the nurse if it would be okay to hug my kids and baby tonight, and she said it was. This nurse stayed past her shift to make sure we had one on one care.
Disclaimer - a icky part - skip this paragraph if you get grossed out easily. The nurse showed R how to take care of the Jackson Pratt drains. I have three tubes sticking out of my body, one for each side and the lymph nodes. These tubes drain blood and body fluids to collection bulbs. Every four hours we push the fluid down to the bulbs, then empty the bulbs into a special cup. We record how much fluid is collected in each area, then flush it away. The first time the nurse showed R how to do this he got kind of woozy and had to sit down. The petite nurse was glad my 6 foot husband did not try to tough it out and then faint. After awhile he was able to see how to do the rest. Then he has continued helping me do this process every four hours, except for once when he took a walk and my mom helped. My neighbor hooked up me with a great free camisole that has an inside pocket for the tubes and bulbs. I did throw up at the hospital a few times and at home a few times. R took care of it both times at home. He's the greatest!
The nurse showed us how to take care of the dressing and tubes and how often to take the painkillers. After general anesthesia I always do two things, get really cold and cry out for my children. R asked the nurses and I did not cry out this time. I was cold so they brought my favorite thing when that happens, a warm blanket to wrap around my head. They wrapped me up in warm blankets and waited until my color came back. From the time I woke up until we left every time they checked my vitals I was great, 100% on oxygen and so on. I was a little shaky when I walked, but that was perfectly normal considering what I had been through. I was doing so well they said I could go home and see my kids before they went to bed, and to just take the warm blankets with me. My mom had prepped the kids that I would look sick. When we got home they were excited to talk about the surgery day boxes. Then we did light hugs and kisses and Baby just smiled. It was a wonderful ending to a difficult day.
As we drove home we talked about how supported we felt and grateful for the prayers offered on our behalf. It is very humbling. My aunt let me know that the family fast was on my grandma's birthday (I will trust her and not try to proofread that information). We believe in eternal family relationships and know that care and comfort can come from many places. Our family was well taken care of on such a hard day. We are glad to have taken that first major step in cancer treatment. A bad part about having done this before is the dread of doing it again. The flip side is remembering the encircling of love we felt last time, and feeling the love, if possible, more now.
We appreciate all the love and support we have received. It really is making the burden lighter to carry.
