Puck 2016: An end of the year tribute to Amy

2016 has been a horrible year and one of the worst parts of 2016 was my wife Amy's diagnosis of cancer and eventual death from said cancer back on November 25.  2016 was supposed to be a good year.  We were supposed to be electing the first woman president in this country and this was also supposed to be a good year for Amy and me.  Neither happened.

First, I need to set the stage.  Back in 2009, I was struggling somewhat with depression.  Honestly, I had been struggling with depression for probably over 5 years, having received occasional counselling in college.  In September of 2009, I was to a low where I was once again receiving counselling.  Then in November, I met Amy.  Meeting her really helped me to turn my life around.  Immediately, I no longer had a need to receive counselling.  My depression still took a few years to completely go away.  Looking back, it must have actually taken a full five years, generally becoming less of an issue every year.  When I did have bouts of depression, I tried my best to hide it from Amy.  Perhaps I didn’t want Amy to think she was at all responsible; I really don’t remember for sure.

I wonder, if I hadn’t been bothered by depression for all of those years, could I have done a better job of returning the favor and helping Amy make her life better?  Now, her mother, Arlene, may say that I did that just by loving Amy.  But that won’t stop me from wanting to have done better yet.  Things actually went in the wrong direction the first year or probably two of marriage.  Both of us gained weight.  I don't know how heavy Amy became, but I was beginning to push 200 pounds myself at one point.  (I would need to dig through my health records in order to figure out what year this was.)  We did get this turned around.  I did get back down to my more normal 185 pounds and stayed there until 2015 when I started really pushing myself to lose more weight.  I don't really know how Amy did.  Stereotypically for a woman, she would not talk about her exact weight much.  What I do know is that she didn't improve her running times very much.

Amy participated in running events even before her and I met, but Amy did not like to run.  She may have even hated it.  She ran because she didn’t want to be overweight and out of shape and she forced herself to run to achieve that goal.  I wish I would have been able to help her more on this. I will quickly note that one activity she did enjoy was bicycling.  We did eventually get a tandem bicycle, but this was only two years ago.  The reason for getting that was so that we could bike together.  My skill level was substantially higher than hers, so she would slow me down.  Also, Amy never felt comfortable going more than 30 miles at a time before she would tire out.  Getting the tandem allowed us to go faster and further together.

This brings me back to 2016.  As I said, 2016 was supposed to have been a good year for us.  Amy had quit her full time job at the Hope Lodge so that she could have more time at home.  Add in the fact that she was also losing a daily commute to Iowa City, this was going to add easily 10 hours to her day.  This was plenty of time for her to add in additional workouts to her day.

Amy started off the winter by working on rearranging our furniture instead so that we could be ready for adoption, something else we were really hoping would happen, or at least start to happen here in 2016.  So I figured by the time spring rolled around, I would be ready to push and help Amy to run more.  I had even purchased a resistance sled to work on strength and speed.  We didn’t get to use it that much.  Back in April, she was complaining about her stomach bothering her when she worked out.  Obviously, in hindsight, that had to have been the cancer.  We probably should have seen a doctor about the issue.  That said, I don’t think having detected the cancer a month earlier than we actually did would have made much of a difference, so I’m not going to be blaming myself for overlooking such warning signs.

Come May, we participated in a triathlon up at Wartburg College.  That was a good indicator that we were way off track from where we should have been as Amy did not have a good time.  It would be less than a week later from that point that she would be diagnosed.

I so wish I had done a better job of helping Amy reach her fitness goals.  This will, unfortunately, be a point of deep regret for me for some time to come.  I've been trying to do my best to somewhat make up for my past failures by spending time this holiday season trying to get into shape myself.  I've also been working on getting Amy's dog Bailey into shape as well. But, as I do so, I can't help but think why I didn't do more of this sooner.

This all said, I'm glad 2016 is going to be over.  Sure, I recognize that the day that marks a new year is arbitrary, but it is a marker nonetheless.  Perhaps I can turn 2017 into somewhat of a year where I can feel more like celebrating Amy's life and work on letting go of my regrets.  I suspect Amy would have wanted as much.

Looking Towards November

I am looking forward to November and hoping this month stabilizes or slows down any excitement I have had experienced recently. On Monday the 24th of October I experienced shortness of breath, light-headedness and my heart rate was high to where I thought I was going to pass out. I had Leo call the ambulance and went to Mercy ER. After an abundance of tests, it was determined I had pneumonia.

After a LONG night in the Emergency room and being set up in my own room, we were all very tired. It was an exhausting few days for all of us. I was especially exhausted, feeling like I was never going to get out of the hospital. I started to question if it was going to be a week or a week and a half? I was definitely going to miss my next chemo treatment.

What turned things around for me is on Wednesday I looked out my door and saw a pet therapy dog in the hallway. I asked to see the dog when they were available. I sat there with Sophie on my bed, a beautiful yellow lab, and teared up. I knew at that point, I was going to do what I could to get home and see my dogs, my fur babies. I missed my dogs, I missed my house, I missed being home with my husband (although he was staying over night at the hospital).

I started Occupational and Physical Therapy at the hospital, and am continuing with home PT to continue to build strength.  My symptoms of swollen legs and neuropathy in my feet and hands continue to bother me each day. I continue to work on my PT exercises also.

It was nice having a private room and the nurses were great as well as the doctors being especially helpful! There was also a dietitian that got involved who was very helpful to help with my special diet.

Right now I am home with the help of my husband, mom, dad, and dogs. Thank you to the friends and family who have reached out and expressed their love to me through this time! This love means the world to me and helps to get me through the days and week. I am at home resting and do not have any doctor appointments until Monday Nov 7th where I may have my next chemo treatment.

Much Love,

Amy B

End of September Update

I have been quiet lately on this blog thing and there has been one reason for that. Fatigue. I wake up when close to 9am most days this week, but if my body needs the rest then that is what I will do.

I did have chemo last week, and my next one isn't until October 10th. The long break is mostly due to the fact my doctor is changing chemo-clinic days. By the time I go back in for chemo I will have celebrated my birthday and anniversary and this year will be a low-key for sure. I typically love any sort of celebrations because I know how important these things are in life.

A few weeks ago I had a bit more energy and I got out and did a few things. Leo and I went to the Iowa v. North Dakota football game and had a great time! I sad down most of the game, and minimized my walking around the stadium. We attended an event in North Liberty for the Children's Cancer Connection where I donated some scarves for auction

I am still spending a lot of time with my parents, husband, and dogs during the day. They are helping with chores, meals, etc. I need them more than ever before as the chemo builds up and the fatigue has gotten worse. I am thankful for their love, help, and commitment to my treatment. It's hard, but I am so thankful we have each other.

My Lifeline- dogs, family friends!

Truthfully, it has been emotionally challenging as of late. You can only do so much to pull yourself up when you are fatigued. I do the best that I can to stay optimistic, but when you are in the thick of it, it usually gets worse before you can get better. Thankfully, my back pain has mostly been under control lately- although taking pills on a regular basis for that.

So far I have had 8 of 12 chemo treatments, and after the 9th one will have another scan to see how the progress is going. After the 12, I will be on a series of maintenance treatment. I am still learning things as we go.

The Ups and Downs of August

It's amazing what can happen in a couple of weeks. Earlier this month, I had to skip a treatment because my blood counts were too low, but because of that I was able to head on a day trip to Marengo with my parents to a Gerard family reunion and stop by Oxford and reminisce about mom's side of the family and Remember Grandma Kahler- as it had been a year since she passed away.

I had a great time with family that day, and now wish I would have taken pictures with my family. Hopefully next time. Later that week, I met up with a friend from Des Moines had had lunch and went shopping, things were looking pretty awesome! But things started to take a downhill turn from there.

My back pain started to increase and I started to have problems with constipation (which is a side effect of many of the drugs I am on). For two weeks I had endured mostly problems with constipation and had to go to the emergency room three times to seek treatment and relief. The ER is the last place you want to go because you know you have to wait and wait unless you are under severe danger. I had a bad experience at the Mercy ER in Cedar Rapids, so I started to go to the one at UIHC.

I had hit a low in my treatment and in my personal strength. My family were here to help lift me up though, thankfully. I never thought you could feel so terrible due to severe constipation. What made matters worse when I was seeking help for that issue  was my doctor and nurse were both on vacation at the same time, and when I called during clinic hours one day, no one got back to me. I was seeking help and it seemed like their back up system wasn't working in my favor. So the Emergency Room it was- although we were there ALL NIGHT. I am now back in control of the constipation issue and feeling back to myself again.

I did have a CT scan earlier this month, which showed that my lymph nodes that are involved had  reduced in size- which is good news! Apparently, they cannot see  the stomach itself too well. Maybe I would need another PET scan for that? The plan is to take another CT scan after my 9th chemo.

Earlier in the month Leo and I took a trip to Minneapolis to see my favorite soccer team, Chelsea, play at the new Minnesota Vikings' Stadium. It was the first event at the stadium. My team is from London, and I was doing to be devastated if I couldn't see them play because I am not going to London any time soon. It was a short trip, but Christmas came early for this girl!

My goal each day and each week it to keep busy and keep living my life. On the days I feel good, I do my yoga relaxation DVD, crochet, play with the dogs, and get stuff done around the house. There is always something to do! My dad helped place new wall hangings, etc. Matt and Heather sent me some lovely flowers to help lift my spirits up the other day, too!

I love to crochet and will probably start working on selling some items soon!

My house is full of love and warmth, so it's a lovely place to be!

That's enough for now. Much love to all!
Love,
Amy

My realities with Stomach Cancer

I just got done with my third round of chemo. I went in on Thursday morning for labs, iv iron and the first chemo drug that last two hours. Then I get to have fanny pack chemo for 46 hours at home. It is the best feeling when  the home health nurse comes and unhooks me from my attached pack! Today I took a nap and then got cleaned up. Actually had enough energy to go outside and throw the ball for Tyson for a bit and relax.

Since you don't really hear too much about stomach (gastric) cancer, I thought I would write up a few sentences about what it has been like for me personally.

• When eating, I feel full easily. So I try to eat a number of small meals throughout the day.
• I have indigestion and burp a lot- even more than my golden retriever! Sometimes I blame it on her.

  

  Burp! (it wasn't me!)
• Chemo Side Effect Include: fatigue, constipation AND diarrhea, minimal hair loss. and a strange sensitivity to cold. I have started to notice the hair loss :(
• This is not what I had planned to get into my skinny jeans, but I have lost weight because of my stomach issues. It has taken some time to get to know the new me in the mirror.
• I am fatigued for a few days after treatment, but gain some energy until the next cycle comes around.

I will know more about the status of how my treatment is going in the upcoming week. Dr. Berg said they will do scans after I have had 4 treatments, which will be sometime after the 21st. Hoping my counts will hold up to continue with treatment on time.

My last hospital infusion went as good as could be. I sat there with my cup of coffee from the Java House and worked on my latest crochet project most of the time. Leo was there and my parents were hanging out in the family room. I was home in time for lunch! Next week, I get to continue with a planned vacation to Denver, Colorado. So I am hoping to continue with high energy and stamina for those days!

My Wartburg Orange extra large scarf (double crochet).
Is it winter yet? JK!

Much love!

Amy B

Living and Surviving

June was Cancer Survivor Month. Although the month is over, surviving continues. I, myself, have been a cancer survivor since the fall of 1991- when I was first diagnosed with Hodgkin's disease at the young age of 12. Since then, the term "survivor" has taken on different forms and meanings for me over the past 24 years.

Since then, I had taken my earlier cancer experiences and transpired them into my volunteer, educational, and career aspirations. I wanted to give back to cancer patients the care and compassion I had received by the nurses, doctors at the University of Iowa Hospital (UIHC) and the staff and volunteers at the Camp Heart Connection I had received.

I experienced a few struggles along the way, especially when it came to high school. There was no dance marathon and cancer wasn't something a lot of young people came together to support or talk about. There was no Facebook, and I was too shy to be outspoken about being diagnosed again. So I was so thankful for any of the students who were kind to me no matter what.

Thankfully, I was introduced to oncology camp and signed up for Camp Heart Connection during my second diagnosis. I loved spending time with other young cancer patients and survivors! I only saw other kids during clinic days, and support groups were held during the day when I was at school. It was such a positive experience to show how young people can survive and thrive from cancer. I loved the camp so much, I continued on as a volunteer from 1999 to 2012 and still try to support them if I can.

Once I made it to college, I felt that social work was the best avenue to work with cancer patients. Although I was done with my masters in 2003, it would be in the fall of 2008 when I would finally have my chance to have a job with cancer patients. I saw the American Cancer Society was opening a Hope Lodge, a home away from home for cancer patients. I was thrilled to be hired on as a weekend staff, and eventually the assistant to the manager in 2012.

At the Hope Lodge I had the opportunity to meet numerous cancer patients and caregivers and get to know them personally. They often learned I was a survivor too, and it increased the connection and hope for treatment and survival. It reminded me of camp, a place that cancer survivors would be able to come to, no matter their background, find support, education, and a place to rest their head at the end of the day when they were tired.

The Hope Lodge was also family. Family started with the staff, the guests and caregivers who stayed there, and volunteers who gave up their time. My own family volunteered there. My dad was there most Wednesday afternoons to bring me lunch, drive the shuttle, help with maintenance, and sweep kitchen floors. We even held "family reunions" once a year that were highly attended.

But as my favorite quote says "the only thing constant is change"- because it is so true! I resigned my position in effort to simplify my life in hopes of infant adoption (that has been put on hold for now). Also, there have been some major staff and policy changes at the Hope Lodge making the other quote "you can ever go home again" also ring true. I never would have seen a third cancer diagnosis in my future, transforming me into a cancer patient/survivor once again.

After being told the devastating news about having stomach cancer on May 13th, after the dust has settled, I had to learn to live and survive in this situation. At first, it was even just taking things one step at a time, then one day at a time. Along with the support that is given to me from my family and friends, I have to support myself.  Doing this by having a fighting spirit and by listening to what my body needs and taking care of myself. I also try to stay positive and live each day the best I can. Yes, there are ups and downs, but that is when I can rely on my support system.

I am so thankful to my family and friends who have done what they can to reach out to me and support me! I was even told by the camp staff that since I joined their programs as a young cancer patient, they will continue to support my journey because I am part of their family. All of this means more to me than you know!

Love, Amy!

(Typical day of spending time with the dogs,
throwing ball and listening to music)

The Kindness of Family and Friends

In the crazy world that we live in, I just want to take a minute and thank everyone who has reached out to me during this time. Sometimes our world can seem dark and scary. Yes, I have been diagnosed with gastric cancer and I have been going through chemotherapy. There have also been some crazy news stories about politics and sad news about shootings in the past couple of weeks, but there have also been some good in the world. There have been many individual acts of kindness.

In the past few weeks I have received a number of cards wishing me well, emails, phone calls, frozen meals, plants, a key chain, and yard ornaments. My parents are doing what they can during the week to help me out around the house and drive up to my house during most afternoons. Last week when the home health nurse arrived to unhook me from chemo she asked me "so who was there to visit you at chemo?" and I had to ask her "what did that person look like?" because on that day I had so many visitors time just flew by. I was so happy to see both Janet and Kelly who I worked with at the Hope Lodge. Kelly spent hours with me and my parents that day.

I just want to say "Thank You"! You didn't have to, but you did. You reached out to me to brighten my day and let me know you were thinking of me. I truly appreciate all of it!

Much Love <3

Amy B

Plant from our caring neighbors the Rothrocks and hummingbird feeder from parents

My fun new Chair from Mom and Dad

Cute key chain from my friend Heather- my dogs are with me where ever I go! I love it!

Cute Wind chime from Aunt Naomi

Lovely lawn ornament from Judy and Terri

My New Life With Cancer

My Life changed forever on May 13th when I was diagnosed with adenocarcinoma (stomach cancer). Sometimes I still find it hard to believe that I have been diagnosed with cancer for a third time in my life. I am still rebounding from this diagnosis and trying to find some resemblance of my previous self.

The week before what resulted in a trip to the emergency room, I finished a sprint triathlon at my alma mater, Wartburg College, shipped my hubby off to India for a week, started morning workouts with Outdoor Basic training, and working on projects around the house. Things seemed fine.

The problem with stomach cancer is that it does not present with many symptoms. I can see a few of them in hind site after being diagnosed (decreased appetite, gassy-ness, back pain) but most were in the recent weeks of the diagnosis. I was going to call and make a doctor appointment when the unexpected happened.

Being home alone with Leo on work travel across the world, I had been to outdoor basic training and work earlier that day. I had severe abdominal pain that evening and had been talking with my mom on the phone about it. Later that night, I had some nausea and then vomited blood. Scary to say the least. I was in shock and mom helped to get the ambulance to my house, and that was the beginning of my nightmare.

I was eventually admitted to the ICU because of the loss of blood and given great nursing care at Mercy Hospital. After a stomach scope and CT scan the next day, the results were in. Stomach cancer. I didn't have it in me to tell Leo until he was back Saturday night. But he stayed with me although he hadn't slept and traveled all of the way from India. My parents were also with me, by my side, the whole time, and Matt and Heather also stopped by to check on me.

Although Mercy in Cedar Rapids gave me great care inpatient, since I have all of my medical history at the University of Iowa, so I chose to go there for cancer treatment. I called right away on Monday morning to Patty Swicherath, who I have been seeing at the survivorship clinic got me an appointment for the following day with Dr. Berg. I did everything to get my records and tests from Mercy Hospital released to UIHC to get the ball rolling.

Although I have gone through this experience, I have been so dearly thankful for my family, all of my friends who have expressed concern and kind words and of course my two dear dogs who are with me daily. Without any of you, my sanity would have been gone out the window. Believe me there have been a few days that I have lost it, but now I am moving on with the fight.

Much love,
Amy B.