BuiltaLife

Offering hope to those on the path behind me

Category: My Story (Page 20 of 24)

I WILL find a reason to Smile

08/25/2016 / / 1 Comment

2016 was going to be all smiles and celebrations. My oldest daughter turned 21, my youngest daughter graduated from high school, and I celebrated half a century on this earth – 13 of them as a cancer thriver.

Last summer my girls and I plotted to talk my husband into taking a family cruise. You see, my husband had promised me for 20+ years that he was going to take me on a cruise one day. We were supposed to go on one for our honeymoon but other factors prevented that trip. Ever since I have waited for my cruise. 2016 sounded like a great year to celebrate all of the milestones in our family.

January was an optimistic month. My husband received good news at MD Anderson. The tests showed that the trial he was participating in was working and his cancer had slowed down. In fact the doctor was extremely optimistic about his status. The cancer was not growing and had become stable.

February that door was slammed. We were not able to continue going to MD Anderson for him to receive treatment. That’s a whole other story, but the long and short is the insurance company no longer contracted with MD Anderson so now we had to pursue options elsewhere.

March came and we found ourselves at the hospital at the end of the month. There was fluid in his lungs and he was having pains in his back. We found out the cancer had spread to his brain and his spine. I thought those were the longest 2 weeks of my life. I was wrong.

He stayed in the hospital almost 2 weeks, and after much dialogue with the doctors and the hospital staff, we were able to go home.

May came and we celebrated my nephew’s graduation from college. It was such a great feeling that we were able to travel together. We spent a lot of special time with family. Things were looking up again. His spine was feeling better and he got a short break from brain radiation. He was enjoying life a little.

By the middle of May he was back in the hospital. His lung capacity could not keep up and when we left the hospital we had oxygen tanks that would be his new lifeline. Every time a new diagnosis was shared with us, the wind in our sails would slow down just a little. Leaving the hospital with oxygen 24/7 was scary, and he set a goal to live to see our youngest graduate from high school on May 27th.

May 27th arrived. We had a pre-party at our house for family and friends. The 2 of us, the oxygen tank, and many friends and family watched my daughter walk across the stage and receive her diploma. It was so good to seem him out on the field hugging her and celebrating her accomplishment.Kaci graduation 2016

June rolled in and we were back to hoping things were turning to the positive. We were talking about goals. Setting new goals. Even writing a book together.

Before I knew it July had arrived. On the 4th my daughter turned 21. On the 7th I turned 50. We celebrated both birthdays by going to a baseball game and having a beer. Unfortunately, the heat was too much and my husband decided he did not feel he could go. We celebrated those milestones without him.

July 17th. He had a restless night. Early that morning I suggested we go to the emergency room. He agreed. Unfortunately he was too weak to get to the car on his own. We had to call for an ambulance. We spent the next few days at the hospital and learned that his latest scans showed more progression of the ugly cancer. The doctors suggested that we make arrangements with Hospice.

We came home on July 19th. I believed we would be making friends with the hospice nurse. I believed I would see them regularly over the next weeks. I have heard many great stories about people living for months on hospice or even better “graduating” from hospice and finding a new goal to look forward to.

Unfortunately, none of that came to fruition. Saturday night it became obvious that I would not be developing that long-standing relationship with the hospice nurse. My best friend and husband passed away on July 24th.

It has been one month. Life for the rest of us continues on. It is not the life I envisioned. It is not the life I wanted. But it is the life I have. He sent me a last love letter, with the help of his beautiful cousin, In it he said “I hope you find a reason to smile.” Everyday I try to find a reason to smile. and when I do I know he is smiling too.

Now we have the opportunity to make the rest of 2016 a good year. While I know everyday will not be good, I can find some good in every day.

And yes, I am going on a cruise before the end of the year!

What NOT to Say to…. well….Anyone

06/29/2016 / / 3 Comments

What NOT to say….. I was going to say to a cancer patient or caregiver, but honestly, to anyone. These phrases should not be in your conversation go to’s

What NOT to say

God doesn’t give you more than you can handle

Let me start by saying I am a Christian. I believe in a loving God. That being said there is so much that goes into that one statement. First, it implies that God DID this to you. Which brings the debate about pre-destination. I don’t believe that God GAVE me this. If He did, we are going to have a long talk if and when I meet Him in person. I know I’m not the only one to have gone through cancer. Second, the statement implies I don’t need any help. FALSE. I cannot handle this and God knows it. God wants me to ask for help, from him, from friends, from whatever community I am involved in. We are not here to do this thing called life alone.

I cannot handle what has been GIVEN to me. I must ask for help. If I don’t, I will go insane.

God has a plan for you/this

When you are in the middle of a crisis situation (i.e. cancer patient/cancer caregiver/etc) the last thing you want to hear is God has a plan. Again, we could talk about the pre-destination debate. But let’s not. There is so much to be discussed there, a blog post would not do it justice. I do believe that God can turn what seems like a horrible situation into something positive. I am of the belief that God’s ultimate plan is for us to Love Him and Love those around us. Bob Goff said it best in his book Love Does (link to audible book, not an affiliate link, just highly recommend the book). Does that mean that cancer, for me, my husband and my father was part of His Plan? My answer is NO. And please don’t tell me that. Just act out of love towards me. What does that look like? Be a friend, bring me lunch when sitting in the infusion room for endless hours. If you ask if I want to go see a movie and I tell you I can’t leave the house, ask if I would like you to come over and watch a movie here.

Just don’t tell me God has a plan. I will tell you God’s plan is Love, it has nothing to do with Cancer.

 I know how you feel

Do you really know how I feel? I don’t think so. Do you have stage 4 cancer? Do you have a husband that ALSO has stage 4 cancer? Do you have a parent that ALSO has stage 4 cancer? I know I’m not the first one in this situation. I won’t be the last. But quite frankly, the chance you know how I feel is somewhere between slim and none . You probably aren’t even in the same ballpark.

If you don’t know a person’s specific situation, it is highly unlikely you know how they feel. If you do know the situation, the more appropriate response might be “I can’t even imagine how you feel.”

And last, but not least, my personal favorite “So, what happened to you?”

As I’ve said numerous times, I don’t look like I have cancer. I look healthy. Most people see me and probably wonder why does she walk with a cane. In an effort to feel connected, the question usually comes. Sometimes, I can just smile and change the subject, but other times it is harder. Especially when it is combined with the “I know how you feel” statement above.

I don’t like to make people feel uncomfortable, but when they persist, it usually ends up awkward for them. Recently, I was picking up my car. The cashier noticed I was walking with a cane. The questions started. I tried to change the subject, but she did not take the hints. As she continued, she told me about her hip surgery and how it was the best thing she had done and she wished she hadn’t waited so long. Great, I thought. I’m happy for you. Then, the awkwardness. She asked “So, what are you waiting for?” Really? I did not know this woman and spoke to her for less than 5 minutes but she wants to know what I was waiting for. In my best I didn’t want this to get awkward tone, I told her I had surgery, I had stage 4 cancer and that I would use this cane for the rest of my life. In my head I added “Thanks for asking!” The cashier next to her also figured out quickly how awkward the situation was, they both offered to keep me in their prayers. I paid my bill and left.

A great general rule, if you are in a situation where you are interacting with someone for what should less than 5 minutes, don’t ask “what happened to you?” Ask them if they are having a nice day. Tell them you like the shirt they are wearing. If they look like they need assistance, offer help. Just don’t make the mistake of asking “what happened to you?”

 

Surgery Day was finally here

06/21/2016 / / 0 Comments

As exciting as the news was about the surgery and getting my new hip, it was also a little terrifying. The doctor was in San Antonio. Which meant WE would be in San Antonio for surgery and recovery.

I don’t know about where you live, but in Texas, Summer Band is big. And it starts the first week of August, just like football 2 a days. In an attempt to carry on with life, our girls would be staying with friends while we went to San Antonio. Once again, we found ourselves amazed at the generosity of friends. We had no idea how long I would be in San Antonio after the surgery, but it was too long for a 16 and 13 year old to be staying at home alone.

The morning of August 3rd arrived. We had to be at the hospital at 5:45 am (thank goodness my dad lived in San Antonio and we were able to stay at his house the night before). After settling in the pre-op area, there was a knock on the door. It must have been about 6:30 in the morning, and in walked one of our pastors from First United Methodist Church Round Rock. He had gotten up early and driven to San Antonio to pray with us before the surgery. Later, I learned several other friends had come down to sit with my mom and my husband while I was in surgery. I am forever grateful for those types of friends..

One of my fondest memories of pre-op (besides our pastor praying for us) came from a lady in the bed across from me. My doctor had an intern who was responsible for checking on the patients before surgery. I will admit, he was better looking than Dr. McDreamy (for Grey’s Anatomy fans). After my personal Dr. McDreamy left, the lady across from me sat up and asked “Was that your doctor? I want to have whatever surgery you are having!” Obviously, she didn’t want to have my surgery, she just wanted my doctor.  Yes, ladies, he really was that good looking, but he was also married with 5 kids.

The clock continued to tick and I was getting more anxious with each second. My doctor came by to let me know another patient had jumped ahead of me. It was a young boy about 2 years old and they wanted to get his procedure done first so he didn’t get too anxious. Even though the butterflies in my stomach were starting to multiply, I understood relieving the anxiety for the boy and his parents. We continued to wait in pre-op. Dr. McDreamy came by several times to give us an updated time frame and we watched as other patients came and went.

As the time started to draw near, we got another update. It seemed one of the medical implant reps had been in a minor car accident. My initial thought was what does that have to do with my surgery. Another interesting fact learned, when you have a medical device ‘installed’ a representative from the company is present to ensure the part is used/placed. Another thing I could have gone a lifetime without knowing.

FINALLY, it was time to go under the knife. The next thing I knew I was waking up. Expecting family and friends to be in the room I looked around and saw no one. Not even a nurse.

As is the case after waking from surgery, it takes a while for your brain to process what has happened. I looked down at my leg and noticed it was bandaged all the way down to my ankle. A nurse finally came in and noticed I was awake. When I asked her about my family, she had no idea where they were.

Meanwhile, in the waiting room…a funny (at least it is funny almost 5 years later) story unfolded. After the surgery, the surgeon came out and spoke to my family and told them everything went well. At that point, I was in recovery and when I was moved to a room someone would let them know the room number. Several hours passed and they began to worry if there was a problem in recovery. Finally, my surgeon came out to speak to another family and noticed my husband still sitting in the waiting room. He asked him why he was still there. It seems someone had fallen down on their job. THREE hours after I had been taken to a room, my family finally found me.

 

 

Hip Hip Hooray – Time to get a new Hip

06/06/2016 / / 0 Comments

I had a new deck, now it was time to get a new hip.

Now that I had the hysterectomy, it was time to move forward…again.

The hysterectomy was done so I could take Arimidex, another hormone blocker for ER+ breast cancer. This was going to be easy. All I had to do was take 1 pill a day for the rest of my life. Easy.

Oh, but wait, there’s more. Since I had bone metastasis, I also got to have monthly infusions of Aredia. It’s purpose is to strengthen bones in an effort to keep the cancer from attacking them and to keep from having any bad breaks.

In the meantime, now that the hysterectomy was behind me, I was taking the hormone blocker, and getting the monthly Aredia infusion, it was time to find out if I would ever be able to walk on my own again. In December, my radiation oncologist and my regular oncologist recommended the same local hip surgeon. With glowing recommendations I was able to get an appointment with one of the best hip surgeons in the area.

My husband and I had hope based on all of the positive recommendations. Unfortunately, when we met the doctor, the air was knocked out of us – Again.

I need to give credit to the surgeon. He was very nice and completely honest about his abilities. After looking at my scans and reading the reports he told me “I’m sorry. I can’t help you. There is too much damage.”

You could have knocked me over with a feather. The wind was gone from my sails and with only one hip, I wasn’t very stable (ha ha).

As I was still trying to catch my breath, he followed up by saying “There are only 4 or 5 surgeons who can help with this. One of them happens to be in San Antonio. I’m going to send your records to him.” In fact, it was better than that, he was actually friends with the doctor and called his office before we left.

In 2011 we met my orthopedic oncologist. He was amazing. He looked at the scans, reports and x-rays and started talking about options. My head was spinning. I don’t think I really understood anything he said. Thankfully, my husband was there and understood the language (he majored in kinesiology in college). What I remember most is the equipment he wanted to use was not available in the US yet. It was stuck in a government approval process.

I was excited he was talking about options, and then, just like that, the air was out of the sails again.

We made a follow-up appointment and drove home. Over the next few months, we drove to San Antonio several times to meet with the doctor. Each time he would talk about options. I was beginning to get a little frustrated, wondering if I would be using a walker the rest of my life. Finally, during our trip in July, my husband and I were wondering aloud in the car ‘Why do we continue to drive two hours to see this doctor if there isn’t anything he can do?’

When he walked in, it was as if all of those other appointments had been his way of processing everything. Instead of us asking why we kept driving to San Antonio he shocked us by saying “It’s time. When do you want to have surgery?” What? Did that just happen?

After the shock wore off, my surgery was scheduled for August 3, 2011. It was time to get a new hip!

 

 

Community is an amazing gift

04/27/2016 / / 0 Comments

We have belonged to an amazing church community for many years. If you don’t belong to a giving community, I strongly suggest you find a group that you can resonate with. They can make all the difference in the world to you, both emotionally and physically.

We decided to have the surgery to put my body into menopause. The doctors both agreed that would be the best course of action. The surgery was scheduled for mid November 2010.

What does this have to do with community?

Let me tell you a story.

Every year in November our church youth group plans a Fall Mission Trip. Even though I call it a trip, it is done over a weekend, therefore they look for local needs in the community. The kids and adults work all day Saturday, then spend the night at a local church. It is a great weekend for the youth and the adult volunteers to experience what it is like to give back.  Everyone from middle school to high school is invited to participate and they work at different locations throughout the community. Close to 100 people participate in this event each year.

As a family, we had participated in this event with our kids before. This year, it was our turn to be a recipient.

While we were at the hospital, my husband received a phone call. One of the projects scheduled for the upcoming weekend Mission had to be cancelled. Scrambling to find a project for 20 or more kids and adults to work on, the church leaders reached out to my husband. They wanted to build a deck on the back of the house that would have a ramp to allow me access to the backyard.

Let me just say, it is so much easier to be on the giving side than the receiving side, especially for my husband.Deck Youth Mission

His first reaction was NO. We would just be getting home from the hospital, and he did not want me to be bothered by the noise and chaos of the volunteers working just outside our living room.

A plan was hatched.

When God puts people in your life to offer you a gift, He does not let you say NO. One of our friends from church offered to come to the house, pick me up, let me sit in her recliner and pamper me at her house while the youth worked at our house. It was an offer we couldn’t refuse.

Saturday morning, I was whisked away before 8 am. A little later, more than 20 people were at our house building, cleaning and painting. A beautiful deck was built, our yard was raked and mowed and the ramp my father-in-law had built for our main entrance was painted with non-slip paint. These kids and adults did an amazing job.

I’m not sure it was God’s plan that I have a beautiful deck. More likely God’s plan was to remind us that we are all part of a loving community and that community is ready and willing to help if we just ask (or even if we don’t).

A huge shout out to the youth and families at First United Methodist Church Round Rock. I am so thankful to have this community of friends in our lives.

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