Bitter & Sweet; A Family’s Journey With Cancer

Chapter Nine: What the Hell Just Happened? (Again!)

Wednesday, August 11, 2010 8:22 AM

Well, I don’t know what my sister did last night but Tim woke up feeling much better. I haven’t gotten to the hospital yet but Tim called and said that he wants to come home. He wants to go back to work a couple of days a week and wants to start mowing the lawn again.

They are going to have to hospitalize me next! (I’m only half kidding.) And oh yea… now he wants an MP3 player. This is technology neither one of us knows anything about. (I know, we are way behind the times.) I’ll get him whatever he wants, so all you experts out there just tell me the make and model and where to get it.

Will check in later. The news has been so bleak and scary, I wanted to get this entry off as quickly as possible. I was so shocked when Tim was talking coherently on the phone. It was like a miracle.

Wednesday, August 11, 2010 Guestbook entry from my high school friend

Hi Darcy, It was great seeing you and Tim last month at the reunion. With all that you have to deal with, I was SO pleasantly surprised to see you there! After reading just a few of your guestbook entries, I can see that you have so much support from your friends and families.

Well, I always say that you get back what you give! Make sure you ask for help when you need it, that’s what we are all here for and sometimes people just don’t know HOW they can be of help to you. Ok?

Wednesday, August 11, 2010 Guestbook entry from Tim’s former in-laws

Uncle Tim, Aunt Darcy, Emily, Colin, Matthew, and Frankie, I can’t imagine how hard this must be for each and every one of you. It is brave and incredible to keep an online journal of your daily personal activities, struggles, and feelings.

Thursday, August 12, 2010 11:17 AM

I am very exhausted and bleary-eyed, but I want to try to make an entry before I pass out! So… after the usual hospital communication issues, we were finally able to get Tim discharged from Roswell last evening. There were several issues with his medication scripts to square away but we are able to keep up what Roswell had going.

I strongly suspect the key ingredient to all this was the steroids. That is what has turned our cat around and once that was started for Tim, he really took off also; yeah for steroids!

He is a bit manic now! He is eating normal foods (for the first time since his diagnosis) in smaller amounts. He could hardly sleep last night. He is running around washing dishes, doing laundry, skimming the pool, complaining about how things have gotten run down since he stopped participating in the household.

He has gained seven pounds… CRAZY! Is this a miracle?

He’s pretty cute; the steroids also make him very emotional, so he cries all the time… good crying. We all crack up, someone asks him a simple question like “What would you like to eat?” and then we see it in his eyes — uh oh, he’s going to cry again.

I wish I had more time because there is so, so, so much to explain. When I walked in yesterday morning and saw him standing and walking around the room, I was caught off guard. I was overwhelmed with crying, like a major meltdown. (Of course, Tim was crying too because he always cries now.)

I was like, “You almost died and now you want to mow the lawn? I don’t know what to do with you!” Maybe a few more expletives than that… I was relieved and rejoicing eventually, but initially, I was just like a wet noodle.

I remembered that I know this about myself — when it is really, really dark, I usually stay very strong. The second Tim improved, my body and emotions just fell apart and collapsed. I don’t know if that is the opposite of most people or not, but it feels so weird to me.

In the middle of the crisis, I hold my head up and push through. When I felt like I should be crying with happiness I folded into a pile of mush. Anyhow, I’m being kicked off the computer. Later I will write more about the medical plans for the future and also about what you all need to know about how to proceed from here. Maybe I can even get Tim to write.

Thursday, August 12, 2010 Guestbook entry from my friend in Chicago

Today is Good — Carpe Diem!

Thursday, August 12, 2010 Guestbook entry from our church family

Hi Darcy, You actually made me laugh when you said, “You almost died and now you want to mow the lawn!” I guess that sense of humor, or whatever it is that helps one cope when times seem totally out of control, is God’s way of helping…

So glad Tim is home. I agree that steroids are a miracle drug and can recall my mom talking a blue streak (more than usual, which is where my sisters and I get it from) when she would take them. I am keeping my fingers crossed that you and your family can enjoy an UNEVENTFUL weekend!

Saturday, August 14, 2010 10:43 AM

In spite of how bad it is for the environment, I’ve decided to use paper products in the kitchen to help cut down on the clean-up time around here. So forgive us Mother Earth!

I feel I have so very much to tell you all but am under time pressure and constraints. I apologize if things are disjointed, don’t make sense, or if I leave gaps. Please ask any questions you might have as I’m aware I’m overtired and too time-constrained.

Tim has been home since Wednesday night. Get this — he went to work for a half-day on Friday! He’s a kook!

Anyhow, his new plan is to work Tuesdays, Wednesdays, and Thursdays, then have a four-day weekend. He will stretch out his vacation/sick time that way, plus his company is allowing people to donate their time to him. Thank you to all of you amazing co-workers!

Also, he does not have to work a full day on those days, but can just do what he can. He also has the option to work at home from a computer if that becomes helpful. We can’t say enough about how caring and supportive his company has been throughout this process!

Tim is on steroids. We have been informed and are fully aware, that these help tremendously. The caution is that people can easily trick themselves into thinking their medical condition is also improving. This is not the case.

Tim’s prognosis has not changed. When discussing the chemo option with his doctor, it has become clear that the treatment would be very toxic to him. In addition, the chances of that chemo even helping at all are very slim based on where he falls on the effectiveness curve.

Given all of that information, he has decided not to pursue treatment at this time. If he should ever choose to do so, insurance will pay for a second opinion. I have gathered as many records as I can.

Cleveland Clinic is ranked third in the nation for cancer hospitals (Roswell is 33) and that would be where we would do a chart review. HOWEVER…Tim is not choosing that option at this time. If he ever changes his mind, things will be in place to do so quickly.

Secondly, there has been much research done (especially recently) on palliative care (hospice, a.k.a. comfort care). Patients often end up living longer when they switch from curative care (like Roswell, chemo, etc.) to comfort care. People are able to eat and sleep more comfortably, have a much higher quality of life, and end up living longer.

With all that information given, Tim has chosen to sign on with Hospice. Hospice will continue to work with Dr. Hahn, who is fully in agreement with this decision and has agreed to cooperate with them.

A nurse will come to our house once a week, but they are on call 24 hours a day, seven days a week. All his medicines will go thru them and be delivered to our house from now on. They also have a chaplain who happens to be from our church who is on his care team (we are care team number five).

A social worker also checks on us weekly. She is setting up someone to work with Frankie at least until school starts and he can be back in his normal environment.

Last night I had a difficult conversation with him about how daddy has the kind of cancer where he will NOT get better. This seems very hard for him to understand. He is also worried now about dying when he is 50 because his paternal grandparents did and now his dad is dying at age 48. I am working on this with him. By the way, what eight-year-old thinks like this?

We have about an $1100 deductible for Hospice left (it was $3600); but we decided to go with them (even though a lesser-known option was available with no deductible). It is all about who you know and we have MANY significant contacts at Hospice that we can rely on if we ever need to.

As I said about the steroids, right now Tim is functioning very well. He is alert, coherent, and mobile. However, the doctor made it very clear that we have no idea how long that will last. Or he could also drop like last weekend and hit those extremes a few more times.

SHE HAS STRONGLY ENCOURAGED THAT ANYONE WHO WANTS/NEEDS TO HAVE MEANINGFUL CONTACT WITH TIM SHOULD DO SO NOW — sooner than later.

If you want to visit, have special alone time, have that burning conversation… please don’t have any regrets; contact me and we will set some time up for you. Don’t hesitate, use this time he is feeling well very wisely.

We are actually going to my sister’s campsite for the day. We may even sleep over if he is feeling well enough to do so. We will be back Sunday afternoon. Thanks for all that love and support! End entry.

Camping is one of the things that we have grown to love as a family. We started out in tents. That first year, I swear there was a thunderstorm every single time we went camping. So it lost its lustre quickly when we had to come home and clean mud off everything we owned.

We were able to get a little pop-up camper that we love. We prefer to go in May and September/October because during our short summer months we love to stay put right at our pool. My sister has a permanent campsite about an hour away, so every year our whole family spends a weekend together there.

This year, it would end up just being a day. Despite having a good time, Tim wasn’t feeling well, and we had to come home. But we did have a lovely day.

Saturday, August 14, 2010 Guestbook entry from my friend

Hi Tim and Darcy, Sounds like you two have really spent some tough time making some very tough decisions. You two are both such a blessing. Thank you for sharing your journey with us. I know that personally; it has helped me tremendously.

I am going to have my husband read it also. Hopefully, it will give him some guidance too. You are in my thoughts and prayers. End entry

Jill’s husband also has cancer. His prognosis is not good either. He has been dealing with it longer than Tim has, but they haven’t been exposed to the resources and support we have, in order to be more prepared. We are truly grateful if our events end up being helpful to someone else. It is one of those sweet gifts alongside our bitter truth that we are blessed to be aware of.

Tuesday, August 17, 2010 Guestbook entry from my family

Hi Tim and Darcy, You are all in our thoughts and prayers and have been for a long time. You have been through a whole lot of stuff since the family reunion. Please let the Lord comfort and give you peace even in the worst of times. I know it doesn’t seem as if He is with you but I hope you know that He has never left your side. Believe it or not, prayer does help. Our prayers are not always answered in the way that we wish but they are answered. I also pray you can see a good counselor. End entry

You know, it’s been interesting for us. Tim and I have definitely gone through our own spiritual journeys in our lives, complete with plenty of “mad at God” and “Why have You abandoned me?” phases.

But for whatever reason, we just haven’t gone there this time. Neither one of us has. We have truly felt God beside us every step of the way. Our sense is that God is grieving and suffering with us, and wishing like we are that someone would find a cure for cancer.

I think the biggest factor is the love and support we have been surrounded by. It’s hard to stay full of self-pity when so many others sacrificially give to you repeatedly.

As for counseling? Now that’s our forte. Besides it being my profession, I am also a personal lifetime fan. I can’t imagine a time when I would ever think I had life figured out enough that it wouldn’t be helpful to have a third party to kick ideas around with.

Tim and I have been with a counselor for the entire ten years of our relationship. Our kids have gone with us too at times. Now Tim is not a fan. He has made it clear for the whole ten years that he would just as soon not go. He is still saying that today.

However, it is quite obvious he has been grateful to have Scott in our lives. Scott has actually come to the house to do sessions when Tim hasn’t been feeling well. Plus, in many of those private conversations we have shared with each other, he’s said a lot of “You know you’ve been right about this stuff all along” kind of statements. Neither of us can fathom going through what we are going through without our trusted counselor, Scott.

Thursday, August 19, 2010 4:23 PM

As usual, a lot of life has been lived before I’ve had a chance to update this journal. First, we had to put our very beloved cat Oreo down last night. As the vet told me, steroids are like a miracle drug. The catch is they only work for a short period.

It was a very emotional time for all of us as we said goodbye and then buried him in the backyard next to our other cat Pooh Puddin’. And thanks to Dr. Peters and her staff who were so kind and gentle with us during this difficult ordeal!

And thanks to my understanding clients who once again arrived for their session only to be sent home… Losing a beloved pet is usually traumatic for most people, but the parallel in our lives is almost too much for us to comprehend. We were given the same speech about steroids for Tim.

Tim worked seven hours on Tuesday, six hours on Wednesday. He came home and talked about the jobs he was able to get out the door because he was there. He is energized by feeling like a vital part of his workplace — and he is!

Today he came home though at 10:00 AM. He is frustrated with his medications. We spoke to Beth, our Hospice nurse, and she is already scheduled to come tomorrow morning at 11:00 AM. But there is one medication we were already trying to wean Tim off of which contributes to his lethargy.

We are also seeing if he can go back on the Ritalin to boost his energy; she also gently reminded us that expecting Tim will bounce back to his old self before the hospitalization symptoms, is probably not realistic; his initial bounce-back was very fast and sudden, which was great — but the reality is that overall there will be a decline in his health; she suggested he reconsider his work schedule as it may be too much for him; sooooooo… he’s thinking about all of that but is just trying to rest when he can for now.

I am overwhelmed once again with all there is to do. And again, people’s generosity and kindness to us is equally overwhelming! We are trying to take things a day, more like a minute at a time. But the task for Tim to maintain his health is a great one. The task for me to manage all that needs to be managed is also a great one.

Keep praying for us and sending all that love and positive energy. We suck up every drop of it.

Thursday, August 19, 2010 Guestbook entry from Tim’s family

Uncle Tim and Aunt Darcy, It was so wonderful to see u again and to meet Aunt Darcy. I and the family love you so much, the kids just adore Frankie, and Aunt Darcy I’m so glad that my uncle has you in his life. You are such a kind person. We all are so glad to have you and your family in our lives. Stay strong Uncle Tim. End entry.

The day that I brought Oreo home to be buried in our backyard, I was greeted by some of Tim’s family I had never met before. I may have mentioned before that one of the gifts we receive that is a direct result of the cancer diagnosis, is the reuniting of people that were long disconnected.

After apologizing for meeting them while we were all a sobbing mess, there was a lovely talk on the gazebo. I was able to witness bridges being rebuilt while things that were long overdue were said.

It turned out Mark lived a couple of blocks from Hospice. Down the road he was one of the most helpful of Tim’s family members, coming to check on Tim daily, sometimes even several times a day.

The bitter-sweet. Bury our pet, introduce loving people into our lives. All within minutes.

Friday, August 20, 2010 Guestbook entry from Tim’s childhood friend

Tim, I want you to know that my wife and I pray for you all the time. We also have you on several prayer chains at several churches (you can never have enough people praying for you). You have a wonderful family and I know that they are a great help and support to you.

I’m very sorry to hear that the meds aren’t helping you and that you’ve had to cut down on your work schedule. I know how you feel as I have been taken off work completely since June (my heart is too weak the doctor said).

I know that when things get tough, having a good attitude makes a huge difference and trying to concentrate on the blessings we have rather than on what we are losing makes us appreciate each precious day that the Lord has blessed us with. End entry

It was beyond our comprehension how people who were afflicted with their own life traumas, could still find the energy to support us. I know we feel like we can barely get up and get back to bed every day, yet some of these people faced tough circumstances AND gave to others. Humbling.

Saturday, August 21, 2010 2:57 PM

Hello to everyone! Tim’s daughter Emily and her son Parker are flying in shortly today to visit for a couple of days. We’re excited, of course!

Tim wants to make his own picture board of his life. As we have time, he will be selecting files off our computer. We don’t have any actual prints made up, so if anyone (or a few of you) wants to volunteer, we could email you the shots we need.

Secondly, we had our first meeting to start planning Tim’s benefit in October. Now THAT was overwhelming. It is like planning a wedding but only having six weeks to do it. The ways you can help are absolutely endless. It will be held Saturday, October 16th from 2:00 PM — 9:00 PM.

I feel way out of my league here. The “committee” is dedicated and experienced and they assure me they know how to run these things and will help to make it manageable. Your help is key to making this a success!

We know you have given and given to us, and now we are again asking for more from you… please let me know how and if you are able to assist us. We love you!

The benefit is supposed to be first and foremost a fundraiser. Even though Tim has life insurance, the financial pressures ahead are never far from our minds. And Tim is particularly concerned about making sure Frankie and I are left in good condition.

But the more we plan this thing, the clearer it is to me that it is about something much bigger than fundraising. It is about me giving my husband his day. It is about Tim knowing what it feels like to be the guest of honor and be surrounded by hundreds of people.

It is about him saying goodbye to them and them saying goodbye back. It’s going to be a celebration, one hell of a party.

It’s the epitome of the bitter-sweet life we are leading.

Thursday, August 26, 2010 Guestbook entry from Tim’s family’s friend

Dear Tim, Darcy and family, Steroids can definitely be a double edge sword… they improve your daily life but watch out for the long term. My husband and I always felt we would take all the good days we could get, and thank God for the steroids! So I am happy to hear they are giving you some relief.

Thursday, August 26, 2010 Guestbook entry from Tim’s colleague

Hi Tim and Darcy, I have just finished reading all the previous messages sent to both of you and all of the journal entries — here I sit with tears in my eyes at all you have had to endure. Life is not fair and the older I get the more I believe that.

Tim helped me often at work. I was always bugging him for help with various problems. He is truly one of the good guys — always helpful and pleasant — the type of person you want and need in your “work family.”

These are the people I miss. I retired almost five years ago. Tim, you are so lucky to have the huge support system around you! I look forward to seeing you at the October benefit.

Friday, August 27, 2010 5:27 PM

There is so much to update you on, but I’ve not had the time to keep up as I’d like to. We have been visiting funeral homes and cemeteries and let me tell you; it exhausts us on every level.

Big news is that we have changed the benefit date. Quite honestly, we are very worried about Tim’s health and where he might be by mid-October. So we have moved it up to Friday, September 24th, 5:00 PM — 10:00 PM. I know this may be inconvenient for many of you, but please understand where our priorities must be at this point.

The benefit committee is working hard and has also tried to relieve some of the stress on our household. Shirley is the overall director (pays to have a friend who is a professional event planner!). Please try to contact the appropriate person directly for areas you are interested in helping with.

Our lives are so crazy and exhausting. We truly are doing the best we can! End entry.

Making the decision to switch the date of the benefit was tough. People were already working hard but this would make the deadline even sooner. But it became more and more clear to me that this wasn’t just about raising money, it was a celebration for Tim. And I wasn’t sure by October 16th he would be feeling well enough to really enjoy it and soak it all in.

It wasn’t that I was trying to be pessimistic. It was that all too familiar impossible Catch 22-trying to be positive and healing minded with being realistic and accepting.

Saturday, August 28, 2010 Guestbook entry from my high school friend

Darcy, I was very taken in by Tim’s story and the struggles that you and your family are faced with. I know it’s been many, many years since our paths have crossed but I felt it necessary to reach out to you and let you know that my thoughts and prayers are with you and your family during this very difficult time. May the Lord give you the strength, courage, and comfort needed to get through.

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