Important Things

"When you cannot do what you have always done, you only do what is most important."

I made Halloween costumes for my girls. That's a big deal for me. Usually I buy them - on clearance - but I still buy them. I also sat and read with my girls. I raked leaves with my girls. When I take my youngest to preschool we read books in the car while we wait until she can go in. I cuddle with my girls. I sing songs to and with my girls. We listen to stories together. We find shapes in the clouds as we drive to and from school. We do crafts together. We dance together a lot. 

Sometimes I wonder what they will remember. I wonder how much time we have to make memories. I wonder what will be the most important to them when they remember their mother. I don't care about homework like I used to. I care about who they are as people. I care about how they treat others and their ability to set and work towards goals. 

Are they learning to work hard? Will I be here to help them learn it better? Are they developing a testimony of their Savior? Will I be here to help them develop it further? Are they choosing good friends and treating others with respect? Will I be here to help them with friendships as they get older? 

I think I will. I pray I will. It lurks in the back of my mind, coming out when I don't expect it to. Then strange health concerns come up, and I wonder again. I wonder what state I'll be in when they are teenagers. 

Overall, I just feel thankful that I am in their lives at all. I feel happy that we are a family. I feel blessed that I get to be their mother, and in the next life, I'll still get to be their mother. 

So, now that I cannot do all that I once was able to, I try to focus on what is most important. And, it comes as no surprise, that most important thing is time with my family. So if I don't see you very often anymore, it's not because I don't like you. It's not because I disliked doing the things that brought us together. I am just making choices with what to do with the energy I have. And that energy is being poured into the most important people in my life. 

Radiation Adventure

The spine is an amazing part of our body. Mine has some holes in it. Holes called lytic lesions or lytic tumors. Because of these cool holes, my back feels sore pretty much all of the time. The largest tumors are in the thoracic area (upper back).

Every time I go to see my oncologist or get an infusion I am asked if I am in any pain. For a long time, I said “no” because I didn’t want their solution to the problem. Finally, it got bad enough I said, “yes,” and their solution was radiation. See, I knew I didn’t want it.

This last week was radiation week. Radiation to stop pain, and to stop the tumors from growing into the spinal cord (I guess that’s a bad thing). The neat thing about radiation is that it goes right on through your body. The spine just happens to be in line with other important parts of our body, like the esophagus, stomach, lungs, and abdominal muscles. Small things like that. Therefore, the feelings of nausea, weakness, headache, bone ache and dizziness were not too surprising. It just would have been nice to be forewarned that they would happen.

It’s hard for me to ask for help, but I had some amazing people step in and help when I needed it. Thank you.

So, after the radiation is done I get to go back onto the newest chemotherapy thus far. It’s oral. I take it in pill form at home. I know, it sounds strange. I have to keep it sequestered away from other people and food and in a zip lock bag so others don’t come into contact with it. For the first time since I began this whole chemotherapy thing I may need the anti-nausea drugs they gave me. That will be fun, because while they prevent one from vomiting, they sure make the person taking them feel strange and ill in other ways.

Off to new treatments and new things to learn!

A Happy Memory

As I sat in a waiting room today I had a memory of an event that occurred about one year ago in that same waiting room. I had driven up to Huntsman for a “radiation planning session” where they do the set up for radiation. Huntsman Cancer Institute is located at the top of the University of Utah campus. Once I enter the campus, it takes about 5-10 minutes to get up to the hospital. But that day the normally 5-minute drive took about 45 minutes. The cause was some roadwork going on right outside The University of Utah Hospital, which is just below Huntsman. Everyone was late. Employees were late to shifts at the hospital. Patients were late to appointments. Therefore, there were about eight women in the waiting room, when usually there are two or three. We all sat in our hospital gowns waiting. Doctors came in and apologized for the wait. So, some of us started chatting.

Me: I think they should give us our own hospital gowns to have at home. That way we can just wear them here and not have to change. It would save time.

Woman #1: And then we could personalize them. We could choose our own colors.

Woman #2: It would also save on locker space.

Woman #3: The only problem would be if we got pulled over while we were driving. The officer would be like, ‘where did you escape from?’ And we’d look the part.

Women #2: And we wouldn’t even have a bra on!

It was a happy memory. 

Happy Moments at the Huntsman Cancer Center in South Jordan - Daybreak

The last PET scan I had (besides the one today) was three months ago (get this, I have them every three months…I know amazing!) The day after said PET scan, I was supposed to meet with Dr. Oncologist; however, I was sick from the scan and needed to stay home. I ended up discussing the scan results with Dr. around 4:30pm, when I was informed that some tumors grew back, because they missed me, of course! He therefore changed my drug for the infusion I had scheduled for the next morning…7:30am at the South Jordan facility.

Surprise! I’m here in South Jordan and need a different drug than the one ordered three weeks ago! Nurses in South Jordan find out that I need this new drug right when I get there. For some reason, leaving a message at 5:00pm (after everyone has gone home) doesn’t give the pharmacy enough time to get the desired drug there by morning. Crazy! So, they don’t have the drug there. At all. NO DRUG on the property. Awesome!

Options? Wait four hours for someone to bring it down from the Huntsman Center by the U of U, or go home and come back Monday. I voted for the latter.

This changed my infusion schedule in my favor, so that when we took a trip to California, I did not have an infusion the week before. Yea! Lots more energy!

That experience at South Jordan is almost as good as when the pharmacist brought me my chemotherapy on a silver platter, with a fake mustache on, and in a fake French accent said, “Delores, here is your chemotherapy. I hope it is to your liking. Is it as ordered? I take it you will find everything in order.” That was a happy moment.

Past and Present

Things I used to take for granted:

• Not getting very bad colds every couple of months
• Cuts healing quickly
• Being able to stand for hours in a day
• Having the energy to be social
• Having strong fingernails
• Being able to keep my house clean
• Having the mental clarity to study deep topics
• Not getting distracted easily 

Things I used to not understand:

• Relating with people who have to limit what they eat
• Understanding when people discuss chemotherapy
• The loneliness that comes will long-term illness
• Socially awkward situations when others seem to care very much about things that do not matter at all to me anymore, because they are small and really don't matter
• The pain of wanting with all my heart to be able to do something for my child, but being physically unable to do it
• Gratitude for others' willingness to step up and help
• Love for a child who works hard to help her sisters when I am unable
• The physical, emotional, mental, and spiritual enabling power of the Atonement, which strengthens me to do the things God wants/needs me to do to build his kingdom
• The healing power of children singing sacred music

A Bit of Frank Discussion...

I dislike the looks of pity, the expressions of "I'm so sorry," the fear I see in people's eyes when they don't know what to say so they just stare at me. It gets really old. I feel like slapping them on the face and telling them to buck up! I am not sorry I'm going through this. I don't want pity. I am just a person who is walking through mortality like everyone else. This trial may be more evident than other people's trials, but it certainly is not more difficult. If we could see other's trials we would be in awe of that person. But most of us have no clue what our neighbors are experiencing. We don't know the pain hidden in the heart. We don't feel their insecurities, their fears, their disappointments. Some experiences are more visible than others, but all are personally designed for us. Given the choice I would choose my trials and you would choose yours all over again.  

At times I feel lonely. I think we all do. Does that mean that my life is more difficult than others? Certainly not. At times I feel discouraged. At times I wonder if my efforts are making a difference. Other times I wonder if any other person can understand how I feel. That's when I turn to my Savior, because I know he understands. 

How are my children handling my being gone for treatments? How are they handling going to school with children not in their neighborhood? There is so much more in life than cancer. There is such a larger picture that I see parts of, but only parts. If I were to focus all of my attention on the limitations that disease brings into my life, well, that would be pretty depressing. I vote against that.