Bitter & Sweet; A Family’s Journey With Cancer

Chapter 8

Chapter Eight: What the Hell Just Happened?

Friday, August 6, 2010 7:32 AM

I am having a lengthy conversation with Tim’s doctor today (hopefully). I’m going to ask about test results in combination with the decline of his quality of life. He has now lost 33 lbs. and even finds it difficult to stand up sometimes!

On the positive side, we have finally booked a benefit for Tim! It will be Saturday, October 16th at the East Seneca fire department. “The Dustmen” will be playing. A very, very dear friend of Tim’s is in the band. They are an Irish Celtic band so it promises to be a great evening.

Friday, August 6, 2010 9:14 PM

It has been another tough day here in the Thiel-Colvin household. I spoke with Tim’s doctor this morning to alert her of Tim’s physical symptoms, update prescriptions, etc.. My first journal entry was 7:32 AM this morning.

The days are feeling like weeks now. In spite of the blood cancer markers that were so positive, the CAT scan came back very disappointing. She said that is contradictory data she can’t explain. The cancer has spread to his liver and stomach.

Her plan is to stop this chemo regimen immediately and start him on a new one as quickly as possible. There is normally a two to three week wait, but we can’t afford to do that. What a ridiculously scary thing to hear. We can’t afford two to three weeks? I can’t even believe what I am hearing.

Tim is very ill because of the cancer, not necessarily because of the chemo as we thought. His pancreatic ducts are now blocked (by what exactly I’m not sure) which explains why he is so sick. The pancreas is unable to function properly. She is treating this with an enzyme script whenever he eats anything. However, he has been too sick today to eat so he hasn’t started taking them.

More drugs, different drugs. Can we even catch our breath?

The explanation is this: when they give the initial prognosis of 12 to 14 months, chemo1 usually works for seven to nine months; they then usually start chemo2, which works for another four to five months. However, chemo1 just didn’t work for Tim, so they want to start chemo2.

When I pushed for prognosis, she said there is always the possibility that somehow he will react remarkably well to chemo2 and may still have that year. But there is no way to predict that and thus far he has not responded well to treatment.

BUT HE SEEMED TO BE DOING GREAT!

He was tired but not even acting sick in other ways. His cancer blood marker was significantly down. He still works full-time for the most part.

Someone please make sense of this for me!

Statistics and treatment expectations are shaped like a bell curve. But Tim is not in the average, he is at the low end. Isn’t it bad enough to have a rare cancer? But then to have to be on the rare end of the stats? Is anything about this even remotely fair?

Most scary is that she asked me if Tim “had” to work. I asked her why she would ask me that question. She said she believes she can try and control his symptoms now with medication, however, she can’t say that by September.

She thought he might want to reconsider work because if our family had any hopes or dreams, we might want to act on them NOW; so when your doctor says that… (Tim’s response to that statement was “My dream was to live”…)

Wow, just let me sit with Tim’s response for a moment. No, I can’t. It is beyond heartbreaking. Sorry to deliver such bad news. Please pray and pray and pray!

There are so many, many decisions and choices to make; regarding getting a second opinion, treatment, working, etc., etc., etc. This is like when we first got the diagnosis. We are in a dizzy fog, not knowing what end is up, not even knowing what to make of it all.

Tim took a lot of medication tonight, just to knock himself out. He went to bed saying “Tomorrow is another day” and that is true, hopefully, we will be rested and up to this new challenge. We love you all.

Saturday, August 7, 2010 Guestbook entry from our church family

This is the worst rollercoaster that you all are on right now and I do believe it is so important for Tim to get as much pain relief as possible so that he can get rest and re-energize. The dizziness/fog is the constant change of information and status and what to do next and you all are exhausted with this news and Tim has the exhaustion from the pain.

Tomorrow is another day and best to rest if you can and slowly start to sort out what you have just learned. We are praying for you and for God to give you strength and healing!

Sunday, August 8, 2010 Guestbook entry from my high school friends

Dearest Tim and Darcy, We were just finally able to get into your CaringBridge journal, so we will now stay alongside you on your journey. Our hearts ache and hold hope for you. Much love. End entry

In July, I had my 25th high school reunion. (Did I really say 25th?) It was very informal and out in the hicks where I grew up. Tim and I were able to go, although we didn’t stay very long as Tim wasn’t feeling great.

But we got to see everyone again and we passed out flyers for the Friendly’s fundraiser so everyone knew what was going on with us. This opened up yet another group of people who loved and supported us throughout our journey.

Tuesday, August 10, 2010 8:32 AM

Oh my, oh my, oh my, oh my… where do I even start? First, my friend Ann, (from Chicago) is typing for me because Tim and I are at Roswell. Tim took Friday’s news very hard and has been feeling very depressed since then.

The weekend’s ride was no longer a roller coaster, but more like those rides that drop you 20 stories all at once. Between the depression and the cancer progression, Tim’s health deteriorated drastically.

On Saturday, he developed several new symptoms including vomiting and hiccups. The hiccups were relentless. He was unable to eat more than a couple of teaspoons of food, continued to grow weaker, could barely stand, and turned grayish in color. He seemed to drift in and out of consciousness and was unable to hold a conversation. It was very, very scary.

I finally called Roswell at 3:00 AM because the hiccups were so bad. They wanted him to go to an ER but he refused and said, “Go to the ER for hiccups? Are they crazy?” They prescribed medicine from the 24-hour pharmacy and we started to give him Gatorade and ginger ale.

Sunday morning I called our pastor’s wife who is a Hospice nurse. Tim also has been exhibiting “altered mental status,” which means sometimes he just doesn’t make sense when he tries to talk.

She gave us some advice regarding his medication and recommended another drug for hiccups because the first medicine was only minimally effective. Roswell agreed and gave him a new script which helped more but the hiccups did not totally go away.

Our family, along with the nurse, came up with a plan, and to avoid going to a hospital Tim agreed to cooperate. We got him up, helped him shave, bathed him, cut his hair, and got him dressed. He ate two teaspoons of pudding and two bites of banana. There is more to the story but I need to go talk with doctors now. More later.

(From Ann: They are ruling out bowel obstruction and Tim and Darcy are still at Roswell. Tim is coherent and trying to do sips of liquid and ice chips.)

Tuesday, August 10, 2010 9:20 AM

Continued… sorry for the choppiness of the entries but I am writing between doctors’ and nurses’ visits… Where was I? Sunday was Frankie’s 8th birthday and we had a party for him which had been planned a while ago. We set up a lounge chair in the yard with pillows and Tim was able to come out long enough to hear us sing “Happy Birthday” and watch Frankie cut his cake.

It was an improvement over the previous day but he still couldn’t eat, struggled with hiccups, and continued vomiting. He eventually ate a couple of teaspoons of Jell-O but that was all he took the whole day.

In the evening, our pastor’s wife came over to look at him. She was somewhat encouraging as she felt he looked better than the way I described him on the phone but she agreed that he should go to Roswell first thing in the morning. At times, Tim appeared confused but he was able to reorient himself and she thought this was good. We struggled through another night at home.

Monday morning, after a few calls back and forth to Roswell, they told us to bring him in at 11:30 AM. He started having heartburn. He barely had a voice and it hurt to swallow. We had difficulty arousing him to get him to Roswell.

I can’t explain how difficult and scary this was for all of us! He literally had no quality of life or meaningful contact with us. The van ride to Roswell was a little tough as no matter how hard I tried, he was uncomfortable and felt jostled.

We got him in a wheelchair and went to the blood lab. (This was a new experience for my sister, who went with us. It is very difficult to wait, side by side, with so many cancer patients.)

From there we went to the clinic. Quite honestly, the nurses and doctors were shocked by Tim’s appearance and rapid deterioration. The first person to see him was a representative from Palliative Care (i.e. Comfort Care). We had a lengthy conversation about Tim’s medications and they decided to take him off everything to decrease his severe lethargy.

They started him on Haldol to deal with his nausea, vomiting, and hiccups and then Prilosec for his heartburn. The lab work showed dehydration. They started an IV to hydrate him and he seemed to get better initially.

By the way, we couldn’t get his weight as he was too weak to even stand.

Next, Dr. Hahn came in to see him, his primary physician at Roswell. We had a chance to ask her a boatload of questions but Tim tired of this. She and I stepped away and talked more. The cavity between the chest and legs is what we commonly refer to as the stomach. The cavity, but not the actual stomach, is cancer-infested.

The liver has cancer in and around it. She is unsure as to why the pancreatic ducts are blocked. They could do another stent if necessary but it would be unlikely that Tim could tolerate this procedure. All of these areas, plus the diaphragm, are not functioning properly due to cancer agitating the nerves.

Many of you have asked and YES, his lymph nodes do have cancer. There’s more but I haven’t discussed the rest of the information with Tim yet so I’ll update you all as soon as I can.

Tuesday, August 10, 2010 10:27 AM

Continued… I just spoke with Tim and updated him so I feel comfortable giving you the rest of the information. I had a lengthy conversation with Dr. Hahn about the chemo2 regimen. It has the same 70 percent chance of being effective as chemo1 did.

However, it is much more toxic. The side effects would be worse. I asked her if he was likely to fit into that 70 percent group. She responded that, based on Tim’s lack of responsiveness thus far, it would be unlikely that he would respond to this chemo treatment.

However, it is all a moot point now because Tim needs to be much healthier before chemo is even an option. He needs to be functioning ‘normally’ at least 50 percent of the time to tolerate chemo at all. She seemed to feel that by the end of this week, we would have a good sense of whether his symptoms would improve or not. I

also asked her how long we would have to wait before knowing if chemo was helping. She said that we could no longer rely on blood markers because they were not accurate for chemo1 (in Tim’s case) but that they should be able to tell by symptom improvements quite quickly.

I then spoke with her about my conversation with my pastor’s wife, the Hospice nurse. She has talked about research that indicates that patients who switch from curative care (chemo) to palliative care (comfort) tend to actually live longer. They are able to eat, sleep, be comfortable, and have some quality in their life. Dr. Hahn said that she absolutely agreed.

Many of you have asked if getting a second opinion is an option. While we had discussed this previously, we have had little chance to discuss it again. It is highly unlikely at this point, however, that Tim could tolerate a trip to Cleveland.

The question of whether or not Tim will pursue chemo2, given the odds of its success, is uncertain. Again, this is a moot point now as he is not well enough to start it anyway. The one thing we know for sure is that Tim is stopping chemo1.

This was obviously a difficult conversation to have with Dr. Hahn and just as difficult for me to inform Tim. I had to wait until he was coherent enough to understand the information. He is, of course, heartbroken.

Back to Monday, after Dr. Hahn and I finished talking, we returned to Tim to find him vomiting and having hiccups and pain again. His IVs were almost finished and she decided to do x-rays to see if there was anything else going on. We returned from the x-ray and were getting ready to go home when Dr. Hahn returned and informed us that it appeared that Tim had a bowel obstruction.

She wanted him hospitalized here at Roswell. She explained that the cancer activity seems to be causing kinks in his colon and that it would be better for him to be in the hospital until this was resolved and that she would send a surgeon in to assess the situation.

My husband is stubborn and informed her that he would not be staying in the hospital unless I could sleep with him through the night. They pulled some strings, and I’ll be damned if they didn’t get him a private room.

He was transferred rather quickly to 7W, room 14. At this point, Dr. Hahn said Tim would either rally in the next 24 hours, or this might be it. The next couple of hours were a little difficult as my agitation and frustration increased.

We are really reasonable if informed, but find it very difficult to be so when left in the dark. While the staff is very nice, once Tim was admitted to the hospital unit, they did not have the answers we wanted. Tim was given antibiotics and when I asked why the nurse did not know. When I asked who ordered the antibiotics, the nurse did not know.

When asked if a doctor was coming to see Tim, she did not know. When asked about the surgeon Dr. Hahn had requested, she had no knowledge of that. She said that Tim could no longer have ice chips but didn’t know who ordered that or why.

She asked me about his treatment earlier that day and had no information about what had happened in the clinic. She said, “That was a different floor.” I expressed concern about this and she sent me to the charge nurse. The charge nurse told me the name of the ordering nurse practitioner and informed me that she was the hospital nurse practitioner as I did not recognize her name.

However, she did not know why antibiotics were ordered as Tim had no signs of infection. She said that sometimes they are ordered in preparation for a procedure. I again asked about the surgeon and she said that no surgeon would be in to see Tim, and that there was no doctor that would be in to see Tim, and that nothing would be done until 6:00 AM Tuesday morning.

I explained that this was unacceptable, as time is critical here, and that he was supposed to be treated through the night for his symptoms. She agreed to call the doctor on call in another part of the hospital. In the meantime, they paged a patient advocate at my request who did not respond to the page.

About 9:45 PM, a doctor came and explained to me that the antibiotics were probably precautionary, that he couldn’t have ice chips because of the possible bowel obstruction, and that there would be no surgeon consult. At least we felt informed.

Several minutes later the surgeon arrived, saying that Dr. Hahn had asked him to come.

It is my sense, that everyone here works very hard for you but unfortunately the left hand does not talk to the right hand. The surgeon explained that in his opinion, from the x-rays, the obstruction is not an actual blockage but a physiological response to all the cancer activity. The cancer movement is keeping all of those organs from working properly.

He said Tim could absolutely have ice chips, as long as he wasn’t vomiting. He assured me that Tim would undergo no procedures and that we are strictly managing his symptoms. I asked him how we will know when Tim can go home. He said Tim needs to be able to tolerate food without vomiting.

Currently, he has not vomited since 3:00 PM on Monday. We were hopeful this morning that Tim can have liquids but none of the staff here has any knowledge of the surgeon’s visit to us. As of this moment, we have not seen any doctors this morning so we do not know what the plan is for today. We will update you as we can.

This is really maddening, to say the very least. At some point, some staff person made a suggestion that was invaluable — you should use it if you are ever in a hospital with someone. There is a large dry erase board in the hospital rooms here. I started writing down every single person’s name that walked in the room, even if they were housekeeping. I wrote the time they came and exactly what they said.

It was amazing that communication started to improve between staff and then with us almost immediately. Keep us in your prayers, all your love and support are wonderful!

Tuesday, August 10, 2010 11:10 PM

From Ann: Tim is at Roswell again tonight. Darcy headed home to get a good night’s sleep. Tim’s brother Garrett was there visiting and Janet (Darcy’s sister) was settling in as she is spending the night at Roswell to help Tim however he needs.

There is no concrete discharge date and while no one is pushing to take him home before he is ready, everyone seems to be working towards getting him home as soon as possible. He started clear liquids this afternoon and steroids to decrease inflammation of nerves and whatever else. No vomiting since Monday at 3:00 PM.

The plan is to advance to other liquids after tomorrow morning’s doctor visits. The hope is that he will keep fluids down and take in enough to be safe at home without IVs. He could go home with IVs but how much nicer to not have it?

Don’t know if they will require the passing of gas or a bowel movement before discharge but they definitely want good bowel sounds before discharge! Goal: Get home ASAP… talk about chemo2 later.

Maybe he will go home tomorrow… maybe not, but he looks much better than he was this weekend. Had a lot of visitors today and was worn out but has his old sense of humor back. (Remember to check CaringBridge and call friends for updates when you can… it really helps decrease the work on the Thiel/Colvin cell phones and at the Colvin’s home.) xoxoxoxo Ann

On a side note, amidst all of this medical turmoil, we also met with the social worker. I mostly met with her by myself because Tim was out of it, and also because he didn’t initially even know all the information about his prognosis. I needed time to talk to him but that hadn’t happened before the social worker came.

We are needing to look into disability benefits now. Tim suddenly seems unable to work, at least not at the pace he was. The whole process is ridiculously overwhelming and it’s hard to even get approved. We’ve applied for some things online but our Roswell contact should be able to help us navigate through the volumes of information we have to read and fill out.

Of course, taking care of us financially seems unimportant compared to what we are dealing with physically. And yet, how do I not address this? I absolutely have to keep the roof over our heads. And more importantly, it seems to be Tim’s main concern so I have to keep him not anxious about it.

This is all too much for any human being to have to handle at the same time.

Tuesday, August 10, 2010 Guestbook entry from Tim’s boss

You see the people you work with almost more than you do your own family so it’s hard not to grow very attached. It may not be much but I have given a week of my sick time so hopefully, you have one less thing to have to worry about. My wife and I are thinking and praying for you. End entry

Tim’s employer has been terribly supportive throughout this whole thing. Initially, they didn’t penalize him any time off as long as he showed up for work. It didn’t matter how long he stayed or if he had to leave, he got credit for the day. They couldn’t do that forever, of course.

The company actually set up a new policy so that employees could donate their vacation and sick time to another employee. It had never been done before, but Tim’s situation inspired them to do so. We were very humbled by this, and so, so grateful.

Providing for Frankie and me weighs heavy on Tim’s mind so this helps tremendously. Several of Tim’s colleagues ended up donating their time to him. What a gift!

Tuesday, August 10, 2010 Guestbook entry from ?

Sounds like God is already working by sending the surgeon that others don’t know about! Our prayers are with your family. We are also praying that the doctors, nurses, anyone connected with this case get the info from God as to what needs to be done. God performs miracles and we are expecting miracles! End entry

We had no idea who this person was who signed our guestbook, but we were grateful for her supportive words anyway. After a few more entries, we ended up looking her up on the internet and discovered she lived far out west. Turns out she was a friend of one of my high school friends.

Things like this would happen — people would hear about us from someone else and just lend us their support. And with the availability of the internet, you can meet people across the country. It is truly amazing!

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