Saturday, October 30, 2010

Happy Nevada Day!

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.

Friday, October 29, 2010

The Remarkable Young Women

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.

Do you have a recliner?

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.

Thursday, October 28, 2010

More Prayers Needed

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.

Wednesday, October 27, 2010

Prayers were answered

Disclaimer: I am still taking narcotics.

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.

Surgery Day Boxes and Letters

We had a little bit of a surprise Tuesday morning. The Fed Ex truck dropped off a package from a small town in Idaho to L and C. We did not open them before we left for surgery. Later while we were in recovery we called and asked them what was in it. They told Rex a bunch of stuff and it seemed hard to believe, especially the part about the goldfish.

When we got home they carefully showed us what L and C and Baby got in their surgery day boxes. L said she knew there was so much stuff that they only started reading the books and were going save the rest for chemo day boxes. I told them that they could open all of it and use all of it now, and was surprised at L's and C's selflessness. We were touched my aunt's thoughtfulness and generosity. The boxes were full of their dream chemo day box items - gum, Taylor Swift, Legos, and on and on. I know it lifted the burden for them that hard day.

If that was not more than enough then they received individual letters from their favorite grandma aunt, and R and I did too. I really appreciated the part for R in there, since most of the phone are for him asking about his wife. Plus when we were waiting for the surgery to start R we read supportive emails from parts far (we'll go the 8) and near.

Tuesday, October 26, 2010

Family Home Evening

Last night we tried to have Family Home Evening between the supportive calls and cookie drop offs. Our kids were acting sort of anxious so we had a question and answer period. Most of their questions we about chemotherapy. Since that treatment has not been finalized we did not have many of the answers that they wanted.

We also talked about the surgery in more detail. It was much more detail than L wanted, and she hid her face behind the blanket for part of the time. She also tells R how embarrassed she gets when I talk about reconstruction or protheses to people. It is good to know she is a normal 10 year old girl.

C was having a particularly hard time, because he was confused. He thought I would lose all my hair during the surgery and other little mix ups. C seemed to feel better after our discussion. At the end he declared, "I guess it is easier to replace body parts than to replace my mommy."

Of course I do not know how much Baby is taking in. This morning (the last time before surgery) when I fed her the bottle she looked at me and smiled the whole time.

The New Doctor

Yesterday I went to a new doctor. The office staff at my old oncologist was making me crazy already, and I decided I did not need that hassle. Everyone we asked for a recommendation gave us the same place so I made an appointment there. They even had the new patient forms online to print out and fill out at home - yes!

My mom, Baby, and I went up there yesterday afternoon. We got there a few minutes early, checked in with there pleasant office staff, and then were taken back a few minutes early - so far so good.

We met with the doctor and as he was taking my history he found out I am very healthy except I have cancer. I will probably explain in more detail what we talked about another time. He was logical and kind in his answers and explanations. My mom liked that he said he will have to approach my complex case in a creative way. There were many things I liked about the experience but the one I liked the best was that he purposefully talked quietly the whole time, so as not to wake up the baby. To me it showed that he understood while I needed to discuss cancer treatments with him, I also need to be a mother.

They are so good to me

A few weeks ago my cousin emailed me and said she and her family would pray for me morning and night and that on the 24th she would fast for me. She was the first of many people in my family to send similar emails. Then my aunt (the official decider of what emails get sent to our whole extended family) sent an email asking those who would like to fast and pray on the 24th.

It was even more humbling to read the emails after that as so many of my relatives replied as one relative did, "I'm in!"

My family has felt the strength of those prayers and fasting and good thoughts already. We feel you holding us up. This past Sunday was the most peaceful one we have had since we found out about the cancer. I am sure today will bring more evidence that as the 2010 Mutual Theme states "the Lord they God is with thee withersover thou goest," even in small towns in Nevada.

We are so grateful for your support.

Sunday, October 24, 2010

Life Around Cancer

While we have been busy dealing with cancer it has not consumed all our time, it just feels that way. Here are some things we did this week not directly related to cancer.

We had family pictures taken in a small town near us. Of family history note it is the same small town that by dad and his family lived when my grandpa was going to school up here.

L and C went to a movie party and made these type of bracelets. These specific ones are L's.

On Saturday we decided to focus on family time, so we went out to the fall festival at a local farm. We wrapped Baby up in the Halloween quilt my aunt made and L won one year at a family reunion.

L and C both have kept up and excelled with their school work, despite their very distracted mother. L has finished one grade of math and has moved on to the next.

I went to stake leadership training, and saw an old friend, and many of my new ones.

R had the stitches taken out of his head, and his scar is not very noticiable.

The Baby only woke up once last night!

Saturday, October 23, 2010

Room Swap

One night when we were still hoping the lump was not cancer, I suggested to R that if it was cancer we might to change some of our living arrangements. The Baby would need to be in the room with Grandma, because she still gets up at night and needs lots of physical care. All her stuff, changing table, clothes, rocking chair, and bassinet was set up in our room. We have been working towards that goal this last week. We asked C to give up most of his toys and move into the den (it has double doors on it) with the piano. He accepted without complaint and began paring down his possessions. L got a the bunk bed a little early we were going to get her and the Baby, in about a year form now. She gave her old bed to C to use in the den. We put all the Baby's stuff except for the bassinet(we will put it in there when we actually have to) in C's old room with the bookcases from the den and the bed for Grandma.

the bunkbed's in L's room

On Wednesday L and C were home from school due to teacher training and I thought this would be a good time to make most of the room switch. A friend had offered to help, and even tried to pin me down on a day, but I told her I thought I could handle it. I was planning on it being physically taxing, especially with my bad back, but I knew we needed to do it before my surgery. What I did not count on was how emotionally difficult it was to move my baby's stuff out of my room, because I am preparing for the time I will be unable to take care of her. It broke my heart to move all the items I so lovingly set up in our room for our much anticipated baby. As I was doing it I thought I should call my friend, but I was too much of a wreck, I just wanted to finish and the pain to be done. I know she would of come over anyway, no matter my fragile emotional state. I decided after I was done that I need to ask for help even when I can physically do things, but if they are difficult emotionally to do. The physical burden of cancer this time is easy to acknowledge that it is more than we can handle, but the emotional burden is harder to admit that it is just as heavy.

I realized something interesting later for those of you who are familiar with the physical limitations for those who have had major back surgery in the past. I moved several bookcases, dressers full of clothes, beds, changing table, chairs, and so on in a few hours. There were no physical repercussions from my activity. I did not feel any pain moving the items or later. This was a blessing.

Friday, October 22, 2010

Surgery on Tuesday

They called to preregister me for surgery. It was the fastest preregistration ever, they asked, "Is everything the same as last time you were here, and is your husband going to drive you home again?" I said, "Yes and yes," and I was done.

I am not sure what to expect recovery wise. I have seen the general guidelines. When we talked to the surgeon about the double mastectomy he thought I might be able to go home that day or maybe just stay one night. He based that on my good health (except that cancer thing) my age, and how I have responded to past surgeries. I asked him how much he thought it would hurt. He said it would be much worse than the surgery I had earlier this month. I asked if it would be worse than back surgery. The doctor said no, it would not be worse than back surgery, more like in the middle between a little pain and back surgery.

Then we talked about drains and ports. At this point the surgeon became a plumber, as he detailed care of the drains. The drains are what I think will be the most irritating, and get in the way of taking care of my children. Grandma is coming up to help, and Grandpa will be here too, so I guess Baby will be held enough. I am glad about having the port put in. I have small veins and hate the repeated attempts to insert i.v.s or draw blood.

Meanwhile the we will get ready for Nevada Day/Halloween and I will just be the kitchen sink this year with my multiple drains.

Thursday, October 21, 2010

Chunky Salsa and Spaghetti Sauce

Our tomato plants did really well this year. We are eating tomatoes all the time, and giving bag loads away. Having Baby and then cancer nixed all our canning plans. One of my parents close friends wanted to help us, and gave us chunky salsa and spaghetti sauce that she had canned, plus the stuff to go with it to make simple meals. We used some of the salsa in our tomato soup last night. They also made the Baby a burp cloth with breast cancer fabric and a blanket. Plus I know they are a good support to my parents so I do not have to worry about them. We are grateful to them and all my parents' kind and generous friends.

The Neighbors

We live on a really quiet street. So quiet that when R goes to work in the winter he is sometimes the first tracks in the snow. In contrast to our fairly young ward, our street has many retired people. Our neighbors are such good examples of Christians. When we had the Baby one said she was an unexpected blessing to the prayers they had offered on our behalf. Last time we had cancer it was invaluable to have friends without little children, who were much more flexible in their schedules, and did not have the school germs to worry about. One neighbor called me this morning to let us know they were praying for us and talk about breast protheses. She let me know that there was a better place than where the cancer center would refer me to, and offered to go with me. We need everyone's support, they all can carry the burden in a different way.

Wednesday, October 20, 2010

Bottle Tree

Our Baby Bottle Drying Rack

We have to wean the Baby. We are learning all about bottles. L and C never acquiesced to our repeated attempts to get them to take the bottle. The Baby has been taking the bottle when I go to Mutual. Now she is taking the bottle 75% of the time. A friend gave us all her old bottles and told us about Similac Sensitive. She has been taking that okay. The first nipples we had were too slow for her, the second nipples we had were too fast (L said they gave her a milk beard). The third set was just right. I can not seem to find the just right kind at any convenient place like Smiths or Wal-Mart.

Weaning your baby before you can have surgery or treatments is an every 2-3 hour reminder that you have cancer. This part of the process has been difficult emotionally and physically on both of us.

The upside is the mother's lounge in our church is dark and small, and always seemed a little germy to me anyway. If it was the like the spacious bright one at my sister A's church it would be more of a loss. Besides there are so many people at church who want to hold onto our little miracle, because she is so cute and easygoing. Now we have more time to let others have that opportunity.

Monday, October 18, 2010

Gut Feeling

C had a class meeting today. The teacher invited them share whatever was on their minds. C felt like this was a good time to share that his mom had breast cancer again. He said it took a lot of guts because he so scared about it. His teacher asked the other students to remember that and be extra kind to C and remember his mom in their prayers. C explained to me later that it made him feel a little better, but he was still sad.

L also told her friends today. She turned into a guessing game. She said her best friend guessed what it was. I said I could not believe she guessed I had breast cancer. She said the clue was pink ribbons. I doubt L would announce it in her class. She is much more reserved than C.

You haven't really lived until.....

... you have been stung by a bumblebee. As we were traveling to visit my relatives my husband and I told our kids stories from when we were little. Apparently the ranch my husband grew up on have bumble bees and one time they chased him around and stung him repeatedly. While I have broken my back, and have had cancer two times, I have never been stung by a bumble bee.

Talking to the kids about it

L and C have had different reactions to the news that the cancer came back. They are processing it differently. L is worried about what she needs to do to help, and how their lives will change. C shared with us that he thought I was going to die and that Baby would die too because I feed her.

Whoa, whoa, whoa!

First we explained I was not going to die, and even if I did, which I am not, Baby would not die either. She is going to get her food a different way, which is the bottle. Then we told him he could help feed her. They both were excited about that and then at the next opportunity they each gave her half the bottle.

We visited with my relatives this past weekend and my 6 year old nephew had many questions for me about cancer. Mainly he was trying to understand it and see how it related to him. I did not mind answering his questions. I think a little bit of explanation goes a long way towards making sense of the world around us.

Thursday, October 14, 2010

The Best Kind of Friends

Last time I had cancer we had a Very Special Family Home Evening where we filled a pillowcase with heavy things, and let our kids take turns carrying it around. At 3 and 5 of course they could not do it themselves. Then we explained how we would need help to carry the burden of cancer. We have not had that FHE yet, but already our friends are helping us carry the burden.

The last few weeks have been a blur of doctor's appointments. It is hard to do carpool pickup when the doctor is a half an hour away, and they have a so much to talk about. Luckily I carpool with an understanding friend, who has been taking my kids in the morning and then picking them up in the afternoon. She feeds them snacks and dinner, and lets them watch movies. Plus there are her daughters to play with at her house. L played Littlest Pet Shop with them last time. When C found out he was disappointed. He explained he wanted to play too, because he likes being the dogs.

I was expressing my gratefulness to her and she said it was no problem. I told her I was sure it was an imposition, but I was very thankful anyway. She said I needed to know it was not an imposition, the kids have fun together, and to know I could always call her, even if we needed to go to the hospital in an emergency. This same friend had a calling with me the first time I had cancer. I do not know what she did to deserve to have to be partnered with me again, but I am grateful.

Another friend let me talk space around the possibility of having cancer while we were still unsure of what the lump would turn out to be. She volunteered to be the backup caregiver of my children if my mother-in-law could not come out for the first surgery. When I sent her a plea describing my anxiety about C's room, she said she would endure that mess with me. She is helping with L's school assignment. With all the phone calls I have been having lately, she has been communicating with me through email, which reminds me I need to email her back. Last time I had cancer she had a newborn and I regretted that I would not be able to help her as much as I wanted. She instead helped me so much, and this time she said she did not have newborn and could help more.

My visiting teaching partner told me some good news about her own family. It was the best news I heard all week. Later that night I told her my not so good news. She offered all her support and we talked about how to visit teach through this time, which is so important to me.

The last friend helped me feel useful again. She gave me something else to think about besides cancer. She is meeting me wherever I am at - the mother's lounge, on the way to Wal-Mart, to come up with ideas on how she can help me. This friend is giving me answers on the questions I have to help my kids, especially Baby. She is watching to see when we are overwhelmed and then stepping in to assist. Already she has acted as a buffer in social situations for the reserved husband and I, helping everyone to feel comfortable.

Other friends far away have sent packages and emails full of love. We are not carrying this alone.

Tuesday, October 12, 2010

Chemo Day Boxes

I tried hard to focus on the positives with kids the last time I had cancer. Maybe it worked, because the only thing they seem to remember from that time were chemo day boxes. To emphasize that chemo seemed like a bad thing that hurt mommy but really was a good thing to help mommy. We put together little gifts and each chemo day they would get a new surprise. It got to where they were getting impatient waiting for the next chemo day.

When we told them I had cancer again, they did not have much to say. The next day though they asked if they could have chemo boxes again. I said sure, we could put packs of gum in or candy this time instead of toys. Then they got carried away with suggestions - the new Taylor Swift cd, a new Lego set, lots of baseball cards, a gift card to Amazon, and maybe a trip to Disneyland. The more expensive their ideas got, the less expensive mine became. I think we ended with me saying they had a stick of gum to look forward to sharing on chemo days. We shall see what ends up happening.

I thought later it might be nice if our friends and family could write them letters and we could those in the chemo day boxes to remind them they are loved.


In 2005 I had medullary breast cancer (a hormone negative cancer) when I was 28. We had recently moved to a new town and my kids were 3 and 5. After surgery, 6 rounds of chemo, 7 weeks of radiation, and much heartbreak we thought we had left cancer behind.

In July we had our miracle Baby, after many years of trying. The older children now 8 and 10 started school at the end of August. At the end of September we discovered another lump, and in the beginning of October we found out the cancer had come back.

Now we are looking at a double mastectomy on October 26, and the 6 months of chemo after we recover from the surgery.