Prepared

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.

Keeping Busy

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.

Oh I'm a lucky woman, to count on both hands the ones I love

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 +.

Funny Cards

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.

Heritage Luncheon

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.

Sisters

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.

It is on the Calendar

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.

Flu Shots and the Police

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.

Good News from the Doctor

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.

Proposed Chemo Treatment Schedule

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.

Remembering

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.

A Rashy Beginning

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.

Catching Up

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?

Range of Motion and Arm Pain Update

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.

What is different about them?

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.

Those who went before

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.

Adriamycin

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.

Parent Teacher Conferences

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.

Fast Sunday

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.

Family Newsletter

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.

Exercises

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.

VENDA01 or a Happy Mystery

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.

Tests, Results, and a Goodbye

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.

More Fun With Drains

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.