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.
