Help for Healing

Bitter & Sweet, living daily with grief


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Care Calendar

There ought to be a name for people who are elderly, but not in need of a nursing home. My dad fits right in that in-between category. He is able to live on his own, but not without some assistance. He needs more than nothing, but doesn’t need to be in full-time care.

He and I recently had a talk again about where he lives. He is in a one-bedroom apartment. He isn’t quite ready to move in with me and my family, and he doesn’t want to live in an assisted living home. Frankly, they can be a bit pricey. The next thing you know, your life savings is gone. (I mean your LIFE savings… a person’s entire work life savings.)

I asked him if it would help if his family/friends set-up a calendar so he had some things to look forward to. He thought that was  a good idea so I was glad. I was also overwhelmed though. I knew that I would have to be a lot of phone calls and also figure out a way to keep everyone informed. I felt the stress radiate through  my shoulders. Then it hit me.

Care Calendar! When Tim was sick, our friend from church was kind enough to be the administrator for our Care Calendar site. For those of you who haven’t heard of it, take note because it is an amazing site. You can find it on carecalendar.org and it is free. They encourage you to make a donation if you want, but it is free to utilize.

I spent the afternoon setting up a page for Dad. It was well worth the time investment. It is literally just what it says, a calendar. On that calendar, you can put as many “needs” as you would like. I set up meals, grocery shopping, transportation, apartment cleaning. and visiting. People (“helpers”) can then visit the site if given a code, and sign-up to take care of any of the needs listed. There is even a separate code for more sensitive/personal items that you wouldn’t want the general public to see.

When a person signs up, they give their name and email address. When it is time, they will receive a reminder email that says, “Don’t forget, you are bringing Joe Schmo dinner today.” As the coordinator, I also get an email that says, “So and so is bring Joe Schmo dinner today.” It’s an excellent system.

With the meal example, it will also show relevant information. For example, I set it up to tell people what Dad’s diet restrictions are. Currently, he is on a “mechanical soft” diet, which I define for them and also give examples of things that would be good for him to eat. The calendar can show what the person plans to bring him too so others will know and he won’t get the same type of food every day.

It really is an amazing tool and I can personally attest to the remarkable difference it made for Tim and I when he was sick. We were able to concentrate on him because our basic needs were totally cared for. I have such fond (and humbling!) memories of that part of our journey. People’s kindness was overwhelming. I am hoping that this works well for Dad too, although his needs are minimal compared to someone with a terminal illness.

Thank you to the family that started this brilliant site. And we will definitely be making a donation in the future 🙂 !


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Cinnamon Toast Crunch

Well, nobody is perfect.

I said to Frankie, “Hey, remember when you were younger and I asked you to write my blog and you did?”

“Yeah, but I’m not writing it again.”

“Come on! I’m looking at a blank screen.”

“Well, think of something.”

“Frankie! At least give me an idea.”

“Fine, Mom. Write about how you ate all of the Cinnamon Toast Crunch this week.”

Last week I blogged about my attempts to eat and sleep better. I am happy to report that I did follow through with what I said I would. I set up an alarm appointment that reminded me to go to bed at 11 pm. Last night was my first night at 10:45. Unfortunately, I couldn’t fall asleep for anything.

I also set an alarm for 8 am to drink a protein shake. I am happy to say I either did that or ate bran flakes every morning to start off the day correctly. I haven’t felt like it is habit yet though, but soon I am hoping to add “no eating after 9 pm” then gradually work back to 7 pm.

I try. I really do. I have no idea if I’ve lost weight or not, but I try not to focus too much on pounds anyway. The goal is to be healthier. I don’t think that is just rhetoric, I really believe it’s an important dynamic to success.

But I still fail miserably sometimes. I might eat well all day, but at 10 pm I will eat something I shouldn’t. Thus the Cinnamon Toast Crunch. I knocked off a box the other night, which consisted of two really full bowls plus another half.  Frankie informed me he doesn’t eat it anymore anyway, so I told him I won’t buy it. He said I buy it for me because I want it, and I told him that of course I WANT it, but I try not to eat sugar cereals so I really WON’T buy it anymore if he isn’t going to eat it.

He’s such a tattle tale. When he was really little, we went across the street to a neighbor’s party. I walked into the living room after visiting outside for a while to find a room of laughing adults. Frankie was in the center. He was telling them all about his mom’s Wii-Fit program. It has my weight down to a tenth of a gram. Also my BMI. He also delighted in showing the crowd several of my non-sexy exercise poses.

Traitor.

I went to a birthday party last weekend where we had a homemade cake from scratch with dark chocolate ice cream on the side. My “always eats healthy” friend mentioned a cake recipe that replaces sugar with beets. I could have died. I yelled out to the guests, “Anyone interested in a cake made with beets instead of sugar?” He almost slugged me. Definitely not me.

I will never be good at this weight and eating stuff. Never. But I also probably won’t ever stop trying to at least move in the right direction.  As they say in Alanon, “Progress, not perfection!” Amen, sister.


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Back to Basics

When I lecture on death/dying, I often talk about how even with all our modern marvels of medicine, human life always comes back to two basic needs- eating and sleeping. When a person is undergoing treatment, neither eating or sleeping is easy to come by. Palliative/comfort care often restores exactly that- the ability to eat and sleep more easily. That is why research shows that people often live longer with palliative care than they do with curative care (chemo, radiation, etc.).

I’ve been thinking about how recently my eating and sleeping have been not been doing so well. Honestly, not eating well has been a lifelong problem. It has been the exception when I have been able to get a handle on eating properly. I’ve actually been successful, but only for brief periods of time. Every day I wake up and attempt to do so again, but usually by 2:00 pm I’ve sunk again. I have all the education I need, I just don’t have the motivation or willpower to follow through. Or something.

I tried to think of a baby step I could take and I came up with setting up a task in my calendar that comes with an alarm. At 8 am every day, I want to have a protein shake. That will start my day correctly and maybe if it is an actual task that needs to be checked off, I can put my OCD to good use. If I can get that to be habitual, my next goal will be to set a reminder up at 9 pm that says, “No more eating” and eventually decrease the time until 7 pm.

Sleeping is another lifelong battle. Even my baby books talk about the problems I had. I’m sure I had night terrors, they just hadn’t been named yet. I’ve done sleep tests at different ages. I’ve tried all the different medicines there are. But lately, I’ve just gotten in a bad habit of watching Netflix until 1 in the morning. Then I don’t want to (or can’t sometimes) get up when I used to. After waking Frankie for school, I go back to sleep. By mid-afternoon I need a nap in order to get through my activities. Vicious cycle. Once I nap, then I’m up at night again.

My baby step was again to add a daily task set up with an alarm. My goal for the first few days is to go to bed at 11 pm, WITHOUT Netflix or anything else. Even if I just lay there, it will help break the habit. Then I can lower the time by 30 minutes until I get to bed at a more decent time for me.

So simple, but sometimes I just have to hit myself over the head. Your eating and sleeping is off, Darcy so it is effecting everything else. You need to fix it.

Tiny, elementary steps that I feel like I shouldn’t need to still be making at 50 years old, but yet here I am. Small, incremental steps are the only way that I know of though, to make changes that won’t make me want to jump off a cliff.

Sigh.

I love the ‘ol AA slogan: One day at a time. It’s better than not trying at all, right?


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Fun with Ultrasound

You know my theory. Face the glass half-empty and then from that space, find the half-full. Caring for an aging parent can definitely be a taxing experience. But I have found some fun things that are happening because of caring for Dad. One big thing, is I’m spending a lot more time with my brother than I ever used to.

Dad had his follow-up ultrasound today so my brother Alex drove him out. Dad still drives, but only short distances. We drive over to the radiology center and who knew an ultrasound could lead to so many laughs? Dad and I sit down while Alex parks the truck. I go over to get a cup of tea and ask Dad if he wants some coffee. Now, Alex and I are actually pretty evil when it comes to being children. I know Dad likes his coffee, but I know he can’t have any until after his ultrasound. Alex comes in and he gets some coffee. We all sit down and Alex offers Dad a sip of his coffee. Like I said, we are equally pretty evil.

We get called back to register but there is only one seat. I would normally do Dad’s paperwork but they need his signature. I sit on Dad’s lap, but I know I will crush him. The nurse laughs and the rest of the paperwork is simple. Back to the waiting room. Dad hands me his phone. I look at Alex and hand it to him. I kind of like not being the number one person anymore. Alex is the one that spends more time with him and is taking him home. Alex pockets the phone and then says to Dad, “What about your wallet?” Evil. Entertaining for the people in the waiting room though.

After Dad goes back to the actual ultrasound, Alex and I decide to tell him when he gets out that we got bored waiting and went to breakfast without him. Not to worry. We let him know we were happy to go through a McDonald’s drive-thru for him.

Denny’s is our new favorite hang-out after medical appointments so off we went. Dad wants to sit in a booth so we get planted in the middle of “old person camp.” I tell him I am going to say hi to some friends I see and Alex says,”You have friends?” with great surprise in his voice.

Sitting next to Alex, I am dying because the old man behind me is blowing his nose so loudly it is turning my stomach. For whatever reason, Alex can’t even hear it which I find astounding. About five minutes later, the old man across from us starts blowing his nose. I look at Alex and we crack up. Shortly after that, Alex knocks my elbow off the table. I look at him and he nods at Dad. Sure enough, Dad pulls out his hanky and blows his nose. Alex and I are rolling on the floor by now.

Until Dad gets his bladder procedure done, the poor guy has to go to the bathroom every 10-15 minutes. The joke is old as dirt but after trip number one, I ask him, “Did everything come out ok?” The answer is yes with a slight smile. After trip number two, I ask, “Did you find it ok?” And the joke is on me this time. Dad looks at me without a pause and replies, “Yes, I have a string tied around it.” Now all three of us are rolling on the ground. My sister ended up calling right after that. We put her on speaker phone which livened things up even more.

Dad had a gift card and Alex picked up the rest of the tab and the tip. On the way home, I tell him I understand now why Dad prefers my brother drive. He always picks up the tab. When I’m with Dad, I always let him pick up the tab. I did say that I offer to pay on occasion, but I know he will say no and I only offer once. Either way, now that there is three of us, I’m about 99% guaranteed I am getting a free meal out of the gig.

Next week we go the cute surgeon’s again. Alex will be with us this time. God only knows what will happen.


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Millard Suburban

Part of my new career is talking about death/dying and grief/loss, and part of the goal is to help improve the medical system. I admit, I am hard to please when it comes to hospitals and doctors. It’s not because I’m cynical and picky, but I do honestly believe that our system is very, very broken.

When I went to Punta Cana for four days, so many people told me I needed to go for a whole week. Boy, would I love that. You barely get time to drop your guards down and it’s time to return. But I’m a single mom, a therapist, and I help take care of my dad. I just feel like I can’t be gone longer than that. And sure enough, there was one client emergency and my dad ended up in the hospital. Sigh.

Anyhow, I have to say, I love Millard Suburban Hospital. Dad has been there three times since April. Of course no person or entity is perfect, but I really like these guys. When I got the text about Dad, I started in right away. First I had to handle a situation for Frankie because obviously Dad wouldn’t be staying with him if he was in the hospital. Next was sorting out what was actually going on. Dad does his best to understand the medical stuff, but sometimes things get mixed-up. Everyone who was local was visiting him and trying to talk to doctors, but there was some confusion.

I called the hospital and explained my dilemma of being Dad’s medical advocate (as well as legal and financial) but that I was out of the country. I got a call back from the nurse practitioner. She remembered me and Dad from October’s stay. I immediately felt better. She did her best to explain what was going on. She also said he was stable and I didn’t need to get on a plane and come home. She also said she would call every day and let me know if there was any change.

She did exactly that. She even remembered to say “Happy Birthday” in her message on the day of my actual birthday. (She is turning 50 this year too!) She also had the surgeon call me directly. He explained things to me even further. He was able to clarify some of the more confusing aspects of what was happening, which turned out really just to be a clarification of terms. I told him that I was returning home Tuesday night but not until midnight. I asked if there was any way to keep Dad there until Wednesday so he was not released to his apartment where he lives alone. No problem.

He did exactly that.

I really appreciate this hospital. I figure I do enough complaining about all the bad stuff that happens, I wanted to acknowledge the good stuff that happens. I think I would like to go there if I ever have the need to be in a hospital. Thank you to all the staff who took such good care of a man who all of his family love very much. And thank you for bothering to care about a 50-year-old who was on a much-needed break. You put my mind at ease, which all the beautiful paradise-like sun in the world couldn’t have done if I was worried about my father. Kudos!

(P.S. For those of you that follow me on Facebook, yes! This is the same surgeon that I met in person when I got home and could barely concentrate because he was so handsome… Just another perk of the hospital!)


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Orthodontists

Frankie got his braces off. If anyone asks your opinion about putting braces on a kid at a younger age, I would advise not to. We tried it. It made sense to me. If you put them on early, the goal is to make room for your teeth to come in correctly, eliminating the need to have them later. We did it and the orthodontist considered it a success because Frankie didn’t need to have eight teeth pulled. Frankie and I? We both thought it would have been much easier to have the teeth pulled in one shot. He ended up needing a second set of braces anyway. I had eight teeth pulled when I was his age before I got my braces.

Anyhow, he got them off for the second time this week. He gets the retainers on Thursday. It’s an interesting office. Up until a few months ago, there were only women in the office. I mean, thousands of women. Now there is one young guy that works there. Brave guy. It drives Frankie crazy there, but I love it.

When I came to get him, the receptionist said they post the “new smiles” on their Facebook page and even video. There is a literal red carpet, balloons, etc. to celebrate. But Frankie said he didn’t want his picture posted there or on Instagram. They thought maybe if I talked to him, he would consent. I laughed out loud. Obviously they have no idea what this kid’s relationship to his mother is. He generally tries to do the polar opposite of anything I do.

I told them that he gets mad at me when I post things on Facebook with him. He will say very indignantly, “Mom, I didn’t give you permission to post that.” I ever so politely tell him, “Sweetie, I own you until you are 18. I don’t need your permission. So sorry.” The receptionist laughed. It occurred to me that I don’t sound like a very good psychology person. I should be saying that I need to respect his privacy, or whatever. I guess if I thought that he truly didn’t want it other than to disappoint me, I would try to respect his wishes. But there are lots of people who love and support him and are interested in his life.

As Frankie walked down the red carpet, I told the doc that it was probably my fault he doesn’t like to post stuff. I wrote a book about our family and now he doesn’t want anything to be out there. She looked at me and said, “It’s not your fault,” with a surprised face that wondered why I would ever think such a silly thing.

That’s part of why I love her. She is fun. She is nice. She treats all the patients with respect. But make no mistake. She is clear about where a kid’s place is. Anytime a comment was made, even in the tiniest way, she always spoke up and reminded Frankie that he is responsible for himself. I love her strength. And I appreciate the occasional reminders that I am a great parent and I get to make decisions around the house, in spite of whatever teenagers happen to feel differently (even if it is developmentally normal for them to push the envelope).

I don’t have a good picture of Frankie’s new smile. He let me take one, but it was a frightening picture more than it was flattering. So just trust me. Round two with the braces worked. He looks fabulous. And thanks to the folks at the orthodontist’s office for boosting me in ways they have no idea they even did!


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Genetics Update

Yesterday I posted on Facebook that I was sitting at Roswell and was unnerved and anxious. I was overwhelmed with the responses of support and curiosity that I got. Thanks to all of you! Let me back up and explain.

This whole world of genetics is new to me and it carries a whole lingo and mindset that needs to be learned. To understand how I even got involved with it, check out my blog from September 22 of this year called “Genetic Markers.” Initially there was a whirlwind of research to do and then there was a waiting period until this appointment came yesterday.

Whenever I go to Roswell, there is a slight PTSD type of reaction. It’s not that we had an awful experience there, it’s just having cancer is awful. The place triggers it all- just the sight of it, the smells, the atmosphere. It all comes back. Not rushing back, but it comes back nevertheless. I was waiting to register when a lovely woman brought a tea cart over. It is one of those little things they do there that makes a big difference. I find tea comforting.

I actually had to register Frankie as a patient because he is the one who is eligible for genetic testing. When you are a patient at Roswell, they make you a green, plastic card with your name and a patient number. You have to use it every time you go for an appointment or test. That became a major trigger for me. No amount of rationality helped me. By the time I was in the waiting room at the clinic, I was worried I might have a panic attack. That was when I posted on Facebook. Telling someone, even if it just posting in cyberspace, somehow seems to help me. Then all those amazing responses got me through.

Once I got in, it was actually quite great. Mary was warm and engaging. She was clearly prepared. She had all of the information I had sent in and had organized it and done her homework. She knew everyone’s names and has a brilliant, scientific mind. I told her at the end that I could follow her when I concentrated fully, but I don’t totally wrap around the concepts overall. My brain just doesn’t work that way. My strengths are in an entirely different area of the brain.

Anyhow, this is a lot of information but so many people expressed interest in it for their own families, I will tell you everything. Your situation won’t be the same of course, but I think you can get the basic ideas through my information. It is all quite fascinating (even though it makes my brain hurt!).

First step is to gather all information possible on both sides of the family. The paperwork was done around Frankie, but Mary wanted to redo it with Tim as the center. I don’t have very much information on Tim’s side of the family but I did what I could. Death certificates are very helpful because they usually have the cause of death. You can get copies if needed, but they do cost money. Just like in the mental health field, what you look for is patterns. Also, you look for other contributing factors. Was this person in the family a smoker? Did they have other related diseases (in Tim’s family it was diabetes)? One of the most curious ones was is there any Jewish ancestry anywhere?

I remembered while I was there that at one point I did a genogram (family tree) of Tim’s family to try to figure out who everyone was. I found it later and took photos of it to send to Mary. That required me going through the two memory boxes I have stored in my closet. I haven’t pulled them out in a while. I had forgotten some of the things I had put in there.

The majority of people who have cancer, have a “random” form of cancer and don’t need a genetic evaluation. One of the ways they determine that, is to look for a cluster of diseases and other such factors. There are some things Tim does not fit the criteria for, but he does hit three major points; 1- he was under the age of 50 when diagnosed 2- his form of cancer was rare 3- he had a family history of it (his dad’s cancer was also at a rare age). Those three things make it appropriate to ask the question, “Is there a possible genetic contribution”?

Now, of the people who fit the criteria to even ask the genetic question, only 20% of those get an answer to what they are looking for. Sigh.

With current technology/research, there are 50 genes that are known to have a cancer connection. Everyone has these genes. What they are looking for is an alteration of the gene of some sort. Because gallbladder cancer is so rare, there are no known genes that are directly linked at this time. There are however, two possibilities that could be correlated.

The more likely of the two is Lynch Syndrome (HNPCC). It should be “considered”, but gallbladder is less likely to be correlated than other types of cancer. For example, colon cancer has a 50-80% chance; uterine 60%, etc.; so the chances are much less likely but it should still be considered. Having said that, this type is adult onset, meaning there is no testing until age 18, and no screening until age 25 so Frankie is at no immediate risk. However, the older three kids are exactly at the ages where it could be relevant. There are five genes associated with this, and they are found by a blood test. If it is a no with the test for the five genes, that doesn’t necessarily mean the family doesn’t have Lynch Syndrome. It just means we are at the end of the limits of our current technology/research at this time. If Tim does have it, each child would a 50% chance of having it. It would also mean at least one of Tim’s parents had it. That would mean this information would be relevant to all of Tim’s sibling and their children as well. I’m sure I lost a lot of readers by now. It makes your brain tired, doesn’t it?

Even less likely, is the second possibility, the link to the BRCA1 and BRCA2 genes that have been studied. For women this usually plays out with breast and ovarian cancer; for men in breast and prostate cancer; or generally in melanoma or pancreatic cancer. This is hard to detect because Tim’s siblings were all male so no chance of the female occurrence. The same information is true for this as far as if he tests positive, each child has a 50% chance, etc… (Who wants to read all that again?)

One thing to remember in general with genetic testing, is that the risk is NEVER 100%.

One of the vast improvements in recent years, is that historically a separate test would be required for each of the genes in question. This was costly and time prohibitive. Now they do what is called panel testing, and there can be many tested all at the same time. This is cost and time efficient.

While technology/research is constantly advancing, that means what is tested today could be very different from what they would be able to test for in the next five years. For example, just two years ago there were only 40 genes, and now there are 50. Roswell cannot legally contact patients to let them know of new research. So they will encourage myself and any other patients to call in yearly to check on any new advances in a relevant field.

For Tim specifically, we have the option of testing his tumor. The hospital keeps samples seven years, and we are at six and a half. However, the current tumor technology is specifically geared toward treatment planning for those patients who are still alive. To test his tumor would cost about $4,000 and would not yield information that would be useful for our purposes.

The really great news, is that Tim signed up when he was a patient to allow his blood to be used for research at Roswell. I don’t remember that detail, but I am pleasantly surprised because he was not an organ donor. That concept kind of creeped him out. Mary contacted their research lab and found out that Tim’s blood has not been used for any research yet and I have the legal right to get it back!

The lawyer is looking into what legal document is necessary to prove my right to it, but I need something that shows I was married to him at the time of his death. While that sounds simple, so far that has proven to be more difficult than it should be. There are marriage certificates and divorce decrees, but no one has thought of a document to say, “Hey, this couple never got divorced.” Go figure. Anyhow, once that is all taken care of, Tim’s blood will be sent to Prevention Genetics in Wisconsin, which is a DNA bank. They will keep it until we know exactly what we want to test for. The cost is $149, a one-time fee.

Any testing though, will be an out-of-pocket expense. It’s one of those insurance rules that lacks common sense. It would be cheaper to do genetic testing and prevent cancer than pay for treatment for cancer if the person gets it. But, nope. (Just wondering why they cover birth control because it’s cheaper than paying for pregnancy. Same logic, isn’t it?) Mary is looking into how much blood is available and if there is enough for more than one round of testing. Once I know that, I will have to make a decision: test now, or wait several years until Frankie is older. The advantage of waiting is that by the time he is old enough, technology/research will most likely have advanced significantly. However, testing now would help the older kids. The question is, do the older kids plan to follow-up on the information now or not? Many people do NOT want to know the results of such testing. This is a conversation I will have to have with my older kids.

By the way, the current cost of panel testing is $1000 smackers. When the time comes, maybe I will try to set up one of those “gofundme” accounts. I have seen them for much less noble causes, so why not try? If not, I will certainly pay for it myself. Possibly saving one of my children’s lives would be worth much more than that. By the way, I will be asking Mary to read this to see if I slaughtered the information or did it justice. If I screwed anything up too bad, I will write corrections on next week’s blog.

Last night I had a tough time. I thought I was all good but after spending the evening alone, I laid in bed and felt all the tears well up. Looking through those memory boxes (ever so briefly!), thinking about cancer, talking about Tim so much, and worst of all imagining my children having to possibly deal with their own diagnosis someday caught up to me. Haven’t had a tough night like that in a while. But I got through and today is a new day. I hope this is helpful to some of you. I hope some of you found it interesting. And for those of you who were bored to tears, thanks for reading anyway :)!