Leo here. I apologize that this post won't be all that well organized. I'm reflecting on my thoughts and, well, they don't really come out organized themselves and I find trying to organize said thoughts to ruin my train of thought. So a slightly jumbled mess is what you're going to get!
The first thing I wanted to note is I had published a post back in late March discussing reflecting back on potential mistakes I made in Amy's final days. I don't know what happened to that post, but what is left of it is in an earlier draft state. (Did I have it open for editing on my desktop computer that I almost never use???) I won't be able to recreate the post exactly as it was, but I do want to cover the thoughts I had then.
Primarily, I wish I had made better decisions in those final days. An issue that I do not believe I mentioned before is I became somewhat self-absorbed. Amy really didn't seem herself those last few weeks. I am sure she didn't want to die and the thought of death seemed to scare her. I had initially made some plans to rent some movies, but I think that ended up being somewhat scratched because Amy just didn't have the attention span for a full movie. (I do believe we ended up finishing Kung Fu Panda, which we had started before she entered hospice care, if memory serves me correctly. We also watched Zootopia and may have done so twice when Amy's niece and nephew were visiting.) We perhaps could have found TV shows instead as they would have been shorter and could have been completed before Amy could no longer pay attention.
I know one show she had been watching over the summer was Unbreakable Kimmy Schmidt. I really fucked up and prevented her from seeing all the available episodes as I had taken an interest in the show and wanted to watch episodes together. But between me being extremely busy at work and chemo and, later on, her parents being around quite often, we didn't really have much time together. I think I had told her to go on ahead and watch episodes without me, but she didn't. We could have probably watched some episodes - or many - in those final days, but I don't think we watched a single one.
As I said, I had become a bit self-absorbed. I recognize that, in a way, it was hard not to do so. As I said, Amy wasn't herself and that may be part of what led me to get lost in my own little world. The Amy I had known and loved was essentially already dead and not knowing what to do left me frustrated. The way to avoid that frustration was to ignore Amy, letting her mother focus on her instead, and do my own thing. Still, I wish I would have dealt with the frustration instead of avoiding it.
That said, what I wanted to write about in this post is how some of my more recent reflections align with what I had said in my Puck 2016 post. As in those final days, I wish I had been a better husband. I noted in that 2016 post that I wish I had done a better job helping her with her fitness goals. As of late, I've wondered about other things I could have done better on. Indoor volleyball season started up recently and I began to think about how I had tried to drag Amy into playing volleyball, though she really did not want to. It made me realize I was a bit selfish, though maybe not so self-absorbed, even back then. I was often trying to drag Amy into my activities like volleyball or even skiing a couple of times (actually, I think we literally went skiing two times),** and even video games, but did I do a good enough job of showing interest in Amy's activities in return?
Thinking about it, I had no problem going to her AIS-DSD conferences. I attended three of them with her, missing 2015 only because I had burned up too much of my vacation time going to the World Cup.* That said, I didn't take up all that much of an interest in Hawkeye football (though I will note I have objections to college football for ethical reasons). I begrudgingly went to Hope Lodge galas or fundraisers. I never once went to Zumba. Amy had wanted me to go occasionally; perhaps I should have done so just to make her happy? It was actually Amy, though, who had the interest in participating in triathlons. That was part of her fitness goals and something else I had no issue partaking in. I also had gone with her to yoga for sometime. I don't really remember why that stopped...I suppose I was just too busy with other activities that I decided to drop that. (Amy also seemed to go to yoga less often as well, which may be, in part, because she attended Zumba more frequently.)
In having to re-write that previous post, I've also realized we didn't watch a whole lot of movies, not even at home. Nor did we watch a lot of TV shows. I also wonder what shows or movies she may have been interested in that I disrupted. I know she had been a fan of The Office when we had started dating, but I don't recall her ever watching the show while we were married. Did I ruin that for her since it was a show I didn't watch?
In short, what I worry about is whether or not I disrupted Amy's life a bit and interfered with some of her interests thanks to my selfishness. I don't feel as though I really gave up any interests of mine, which leaves me felling a bit guilty of not treating Amy fairly. It is something I'll need to be watchful for in any future relationship I may have.
* I do not count soccer as something I drug Amy into. When we met, my own interest in soccer was rather small. I knew little about the sport beyond my experience in the Rockwell Collins league. While Amy had no interest in soccer at that time it was an interest we both grew to enjoy more during our relationship and I in no way feel I forced that upon her.
** Gardening was another activity I couldn't get Amy to take an interest in. I couldn't see how best to add this in to the main post, but I wanted to note this may have resulted in other small conflicts in our relationship. As I would often be occupied with gardening on weekends we had more or less free, that meant I had less time to help her clean up in the house. I know she was often bothered by the fact that she spent a disproportional amount of time on house work (if gardening isn't considered as house work).
Sunday, October 29, 2017
Saturday, December 31, 2016
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.
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.
Wednesday, November 2, 2016
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
Thursday, September 29, 2016
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.
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.
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.
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 auctionI 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.
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| 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.
Saturday, August 27, 2016
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!
That's enough for now. Much love to all!
Love,
Amy
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!
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| I love to crochet and will probably start working on selling some items soon! |
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| 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
Saturday, July 9, 2016
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.
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!
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| My Wartburg Orange extra large scarf (double crochet). Is it winter yet? JK! |
Much love!
Amy B
Monday, July 4, 2016
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!
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!
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| Love, Amy! (Typical day of spending time with the dogs, throwing ball and listening to music) |
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