Baby and the Doctor

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.

Doctor Hopeful

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.

Grandma went home

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.

Chemo Boxes

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.

Days 3 and 4 or everything tastes like chemo

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.

Chemo Day 2

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.

1st Chemo Day

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.