Tag: cancer

July 24, 2024 – At Least There is A View

July 24, 2024 /

I am going to make a commitment. Unless something goes drastically askew, this will be the last time I write about my current woes. It is not about pity but about my current situation. Since it is first and foremost in my life, it is going to take a dominant position on what I am doing.

Back for my second stint in the hospital, I told my wife that this must be what prison feels like. I don’t mean to say that this is actually like prison because it is not. Each time I leave the floor, I need to have permission to return. I hate begging to be let in so I try to leave as little as possible. That is the part that is like prison, confined to a room.

You may have seen the stories about an uptick in Covid. As luck would have it, there is also an uptick in influenza. Five patients in this ward have contracted it recently. For that reason, they are restricting visitors and procedures even more. Now, I have to put on a disposable gown each time I enter the room. I also have to wear a face mask at all times which includes sleeping.

Have you seen those prison beds? A mat on a bench. That completely describes my situation. To be honest, it isn’t all that uncomfortable and I have had some nights of extended sleep. I probably get more here than I get at home just because there is less to do here. There is the factor of multiple interruptions for blood draws and vital checks. Some nights are far from restful.

My wife has been working on a debt consolidation strategy since before she stopped working in March. As luck would have it, it finally came through. So what would you know, the notary had to come to the hospital (and go through all the sanitation procedures). You always want to put on a good face with these things but it is pretty hard when you are signing papers next to a commode.

Last week when I was here, I was able to keep my mask off. I also used snacks to supplement meals to try and keep the costs down. With the new mask policies, there is no eating allowed in the rooms. This forces me to leave the secured perimeter to eat. This hospital is isolated. Yes, there are about five or six places to get food and at least one that is open 24hours.

I feel bad. I want to like it but the food is just not good. There is that institutional frugality combined with government subsidy factor. All the sausage is chicken. The hotdogs are chicken. The vegetables are over boiled or steamed. For some reason, half the dishes are Indian. I love Indian food and I am sure I could eat it day after day but not on the potato wedges. I paid $8 for a terrible, unseasoned burrito with chicken sausage and potato wedges in it.

Enough about food, at this point it is a means to an end. My shift is Wednesday night to mid Sunday. Consequently, I am working at least two days. I have struggled to keep my computers connected to the Wi-Fi. As a result, I have taken to using my hotspot. It is why we have it in the first place. I am constantly plugging in and wrapping up cords to keep those devices charge. I really appreciate my office at this point especially because I have to work out of two computers daily.

A programmer needs two screens and hospitals are not setup to have someone work like I do. I even had to take a 2 1/2hr sales pitch meeting, talk about a near disaster. Fortunately, I didn’t have to speak or be on camera. It has been really tough to keep up with things and it seem like I am always working to make up for gaps and missed time.

End Your Programming Routine: At the time of my writing, we are solidly in the second week here. With much luck we may get to transition back to family housing some time on my next trip back. I definitely couldn’t look forward to something more. It takes a toll on you physically and mentally. I have said my peace, I am thankful for the opportunity at healing but ready to go.

July 18, 2024 – Home Away From Home

July 18, 2024 /

It is such a mixed bag. I would dearly love to not be away from home for extended time. That being said, it sure is convenient when appointments are just across the street. No traffic, no parking and no real planning. When my mother-in-law was receiving treatment in Houston, I got to see another version of this housing which was more like a one bedroom apartment. Here, I would liken it to a hotel room.

Being over an hour away is not the end of the world. My neighbor who lives just a block from us makes this commute every day. In fact, there are a lot of people who do. I would never want that, but my point is that it is not unheard of to live where live and work in Portland.

The hospital’s main point is that this is specialized treatment. Should something go wrong, not having direct access to the care team knowledgeable about the subject is too risky. They are afraid that a local emergency room would not adequately coordinate or even know what to do. Secondarily, there will be follow-up appointments. They really don’t know when they will be so being at the ready is really a convenience for them.

The first picture at the upper left is the room. I feel like this could be any hotel room. There are two queen beds, a TV, desk, chair, refrigerator, microwave and bathroom. What makes this not a hotel is the upper picture to the right. What you are seeing is the communal kitchen. Since we have medical, dietary restrictions this is a must for us. It seems like most of us staying there are in the same boat, but the accommodations are not strictly for cancer patients.

The picture on the upper left is also on the communal floor. It is a little alcove with a desk along the wall. This is where I worked when I would get up in the morning to not disturb the sleeping. Not a bad view and nobody was there anytime I was working. Other people came to the floor for phone calls and such but not consistent working.

It is the upper right that is the kicker. This is looking out the window while my wife is having chemo July 4. What you see is a little park with tents setup because the craft brew festival is happening. Staying at the family housing not alcohol is allowed. But, right across the street a three day beer festival was happening. I could have gone but it was $50 and 100 degrees, so I decided to keep my money, But what an opportunity,

End Your Programming Routine: There is some give and take. I am not so far from home that I couldn’t go if I needed something. It is just inconvenient enough that I really think twice about running back and forth. In retrospect, this is a better setup than the RV would have been and the last four really hot days probably would have been miserable. It all worked out for a reason.

July 16, 2024 – My Lastest Thriller…

July 16, 2024 /

I know that this is a big deal to me, maybe not to you. There is a lot to know and so this book is one of the first things the doctor gives to you. The good news is that I am not going to subject you dear readers to a lot of facts and figures about something you may never experience in your lifetime. There were however some either extremely interesting factoids or things that are universal that I want to talk about today.

I was in line at a local store the other day. The woman behind me said in a loud voice ‘how does someone take chemo and not lose their hair’? I didn’t recognize the voice and resisted the urge to whip around. The cashier said ‘you probably have to read the story to find out’. I slowly turned to try and see what was the specific subject. I couldn’t and I had something to say but I just didn’t want to get into it.

What I learned from reading the book was that losing hair from chemo is a form of alopecia. Doctors don’t actually know the reason or cause for most alopecia but it is thought to be an auto-immune problem. Trigger for those can be stress or environmentally induced. I am pretty sure that chemo covers both of those situations.

The second thing and probably the most surprising thing I learned about this process is that it is a reboot of the immune system. When I say reboot, I do mean reboot and all of the learned immune protection is wiped out. When I say that, this also includes vaccines. If you have kids in the millennium then you will be aware that children are getting twenty some vaccines these days. You need to do them all. I see a lot of sickness in the future.

I also read something that I have never heard before. As I said in the podcast that only people who had insurance cover the process would get it. The book talks about some strategies to raise money because apparently some health systems will work with the patient, not ours.

Get this, apparently there is a way to cash out term life insurance before you are actually dead. It seems that if death is inevitable you can work with at third party to pay the insured less than face value. They have to buy out the policy so this is one and done. I suspect that this is something more akin to a payday loan or an estate advance. But, it is an option if the straights get dire enough.

The book itself was interesting enough. I enjoyed reading the historical evolution of the process. It definitely seems much safer, successful and refined than it was seventy years ago. That is a good thing. I call it a thriller because after reading the book, it is much clearer what was going to happen but not necessarily before that.

End Your Programming Routine: I didn’t need to go through this process to learn that you have to be your own advocate in the system. This time just reminds me how that is true. You cannot be your own advocate if you do not understand how it is supposed to go. Next time, I want to skip the thriller and have a love story instead. But, I don’t always get to choose the books to read.

June 24, 2024 – What Is a Stem Cell Transplant?

June 24, 2024 /

Am I at the beginning, middle or end of this? Well, if you don’t understand or know the process then it might be difficult to figure out. I am talking about the high level process and some of the gotchas in the Stem Cell Transplant process. Hopefully you will never have to be involved in it, but if you do then give this a listen.

June 10, 2024 – Illness Impact On Relationship

June 10, 2024 /

This is a remote podcast using and improvised setup. Be prepared for poor audio quality. This is a topic that should be in pre-marital counseling. As bright eyed and optimistic couples think they know, they don’t. Two people with two right ways can have conflict as a result of external factors. Only extra effort on top of an already exhausting time will keep things going in the right direction.

April 22, 2024 – It Is Different This Time

April 22, 2024 /

Today is a darker than normal. I talk about the items that are different with my wife’s cancer battle. I cannot necessarily dwell on the wrong side of fate however for those that will go through it I think it is a unique perspective. It is a bit of a melancholic time. Hopefully that is understood and appreciated.

March 25, 2024 – The Words You Never Want To Hear

March 25, 2024 /

Today is an emotional response to some recent developments. I talk about being an advocate for your own health and my own experience of the health care system. I have been saving this up until I get all of the right and proper details, but after a month of waiting I just couldn’t anymore. So, while this journey has already begun, it is early. Surely, there will be a lot more to come.

February 28, 2022 – Running Out of Words

February 28, 2022 /

No, I don’t mean that I am quitting. You will have to read to get to the punchline today. First, we have a long and winding path to get there, so let’s get started.

Valentine’s Day is over, so what is next for merchandizing? Why Easter of course. What does this have to do with anything? I am getting there.

When I first met my wife, I was introduced to something that I don’t see often. It is tradition called cascarón. This is where you save your egg shells be used for Easter. Essentially, you try to preserve as much of an intact eggshell by cracking off one end of the egg. You want to build up a large inventory of egg shells for coloring and filling.

This is where it get’s fun. Some of the shells are filled with confetti, flour or oatmeal and some might be filled with money and occasionally, there might even be a raw egg! What you do is run around and crack them on peoples heads. We hide them with traditional Easter eggs and then inevitably wait to get cracked. If you want to participate in this tradition, now is the time to start building up your inventory of eggshells.

You should know by now, I am going to take this a lot deeper. One of my first Easters with my Wife’s family was in 1995. We were going to school over 200 miles away and of course it was a school weekend and we had little means to travel so they came to us for the day. They brought the cascarones.

My wife was living in a townhouse with several exchange students. One of them was Japanese and this holiday was foreign. So, we invited her to join us for the meal and the Easter egg hunt. She brought a friend to the dinner whose name was Ai (also a Japanese exchange student).

After the dinner, and when it came to cracking eggs (by surprise is the best) they quickly caught on to what was likely going to happen. Ai got so freaked out that she ran to her bicycle and peddled away not to come back again that day. This was our Sophomore year and consequently my wife became really good friends with her Japanese roommate.

We have kept in contact with her roommate over all these years. Her roommate and Ai came to our wedding. Five years later, we all met at her roommate’s wedding in California. Ai studied theater in college and dreamed of Hollywood, which she pursued. Yesterday, Ai died of cancer.

We had heard that it was terminal a few months ago. In December, Ai left California to go back to Japan for her final days. To be honest, we weren’t nearly as close to Ai as we are to my wife’s roommate and dealing and our own demons concerning cancer, it was out of sight and out of mind. But, it hits that this was someone who we know that left us too early.

My wife deals with strong survivor’s guilt. She had a coworker who was our age and kids are the same age that died of cancer a few years ago, that was hard. They had even done chemotherapy at the same time. Then she had another friend who was younger than us by probably ten years die a couple years ago, that was worse. It feels like we know too many people battling and losing to cancer way too young.

I know, this is being hypervigilant. I see it one place and my eyes are open to where else it could be. But, I also can’t help but wonder what God is telling me in this situation. Not just me either, for people with survivor’s guilt as strongly as my wife’s what can she get out of the situation? Is there a message here, am I trying to make a connection that doesn’t exist or is this a fact of life that now I am getting older the probability to bad endings happen in life?

I talked about the neighbor kid that is battling last week, my mother-in-law is in her second year of treatment, people that are in my inner circle are in the fight of their lives. I’ve gone through it with my wife too. Compassion and empathy are some of my weaker areas for sure. I think I have them, but it is really difficult to express them adequately. Maybe that is what God is trying to tell me?

Yesterday in church, the sermon was conceptually about making the most of a situation (not necessarily dying). What can you do with what you have. The question of the bucket list came up. I had never really given it much thought because I have never created one. At least for me, I came down to goals and achievements are for the living. I don’t really have a traditional bucket list because I think that when that time comes, I wont want to have a final bunch of experiences before I die. I think the point of making the most of the situation actually means living before dying.

End Your Programming Routine: Of course, we are all going to face the inevitable. There is no doubt that if we live long enough, we will see our fair share of tragedy – however we define it. I suppose that I can consider myself lucky not having to witness something like the holocaust or to be born into slavery. With all things, it is not how we handle the acute situation, but the aftermath that is going to make the difference.

February 23, 2022 – I am Interrupting This Series in Brewing…

February 23, 2022 /

Stuff happens. No one plans to get cancer, especially when the person is a child. Whether you are in middle school or middle age, health disruptions suddenly supersede any plans you have in life.

My son has a friend that was diagnosed with cancer last week. They are the same age and they live two blocks away. He has been over to my house many times sometimes for an hour or two and sometimes overnight. Even his siblings have spent time over here. This isn’t really an acquaintance, but someone that we know pretty well.

Speaking from experience, when you are in treatment your life is not your own. In 2010, my wife had a near death illness and in 2012 she was diagnosed with cancer. The severity of the tumor is graded on how treatable it is. In her case it was stage 4 (out of 5) meaning it was effecting multiple locations and was not possible to surgically remove.

I was pulling weeds in the garden one day, just kind of having some alone time. My wife was in the hospital and our pastor came by. He asked me how I was doing and what I thought about all of this. Since I had been through this once before, I knew the ropes with doctors, hospitals and all that. There was little fear about uncertainty of what the next few months of treatment would look like. The fear was really what the future would look like for me and two boys aged 4 and 6.

I told him, “After the last illness, I saw her faith and ability to appreciate life grow exponentially. I don’t think God’s lesson is for her this time. I think this is for the other people in her life, like me”. I won’t say that I turned the switch on exactly at that moment, but I will say that I started removing excuses in my life to change my ways in faith.

In my mind, I grew up attending church every week. As I moved out of the home, I knew my beliefs and I wasn’t opposed to church but nothing we tried really felt comfortable. I justified that I was well adjusted in faith because I spent every Sunday as a youth in church. As a result, I realized that believing is one thing but worship and congregation are part of the deal as well. That is super tough for me because I find it uncomfortable but you cannot reach your full potential as a closet Christian.

Consequently, there is no such thing as a perfect denomination. What is more important is getting plugged in and keep an open mind. I don’t 100% agree with everything my church does, but I can’t say that it is wrong on theology. It is more about the approach and my comfort level and what I would prefer. Quite frankly, I think being challenged and uncomfortable is actually healthy in faith.

I hate to admit this but sometimes I wish that I had been the one that got cancer and survived. I wish that I had the ability to appreciate things in the same lens as someone that see’s life as a gift. As much as I can empathize with the family on the support side of the treatment, as of now I cannot have the same level of appreciation as a survivor. Let me be clear, it is not that I want it, I just will not have the same level of understanding.

A few nights ago, we went to a short prayer service for this teen that is starting his journey. It was informal and we really don’t know the prognosis. I don’t want to be the one that blows smoke by sharing my story and potentially provide false hope or sound somewhat gloating as I won the lottery on survival. I am not saying that it would be received that way either. However, I have this forum to say whatever I want to say. Maybe my writing gives someone a kickstart into finding the right course in life too.

End Your Programming Routine: This isn’t the only cancer story that is currently active in my life. It does happen to be the one that I am more hopeful for and the one that fits my story today. I don’t think that we need crisis or tragedy to change our ways. One thing that those situations do very well is galvanize where you stand and can easily push a person to one side or the other. I hope for the best here, I will stay tuned to where my lesson is in the journey.