Bitter & Sweet; A Family’s Journey With Cancer

Chapters 1 & 2

Chapter One: 2010, B.C. (Before Cancer)

March 25, 2010: Have you ever had one of those moments where a million things run through your mind in just a few seconds? I was having one of those moments. I had just taken an exam to be a Licensed Mental Health Counselor in New York State. I was waiting for the results, which are printed out immediately after taking the exam.

As I stood there, holding my breath, the last 13 months flashed through me. I have been a couple and family counselor in private practice for almost 13 years. When my son Frankie had entered kindergarten, I thought it was time to work more daytime hours and applied for a position near my home. During that interview process, I was informed that New York State had changed all its’ regulations for practicing as a therapist.

After recovering from the panic, I suddenly found myself back in graduate school trying to get the requirements fulfilled. School was tough enough the first time, but going back as a wife, mom, homeowner and business owner was overwhelming, to say the least. Got the classes under my belt, but now I had to pass this exam! I’m definitely not a great test taker. Just don’t like the pressure. I took practice tests and attended a workshop that were very helpful.

Our lives had been turned upside down. So as I stood there waiting, I could only hope that I would pass and life could finally return to “normal.” The proctor handed me the results without a smile on her face. “Not good, huh?” I said. “Oh, I never look at the results,” she responded.

A nervous peek. I PASSED!

I couldn’t call my husband Tim fast enough to let him know the stress was over. Boy, do I like the technology age — no six weeks or months waiting period to discover my fate. I will gladly take on the next phase of my life — that of building up my businesses again. This detour was exhausting but I am back on track!

By the way, Tim and I have been married nine years. We have three children from his first marriage — Emily, who is 29 years old. She is married to Spencer and lives in Georgia with our three year old grandson, Parker. And she is expecting our granddaughter. Colin is 26 and lives with us. Matthew is 23 and lives nearby. And together we share our son Frankie, who is seven years old, going on 22.

Life has definitely been full!

April, 2010: I am a person who often has some sort of infirmity going on. Tim is proud of the fact that he is rarely ill. He can eat and eat and eat (even the wrong kinds of foods) and not gain any weight. Everyone told him it would eventually catch up with him. It did a bit around his mid 40’s. He has developed a little bit of a basketball around his middle, but overall still looks good. I have had a daily pill box for years. Tim has always been medicine-free.

About mid-April, he came to me and said he was having a more consistent “weird sensation” in his stomach. He said it wasn’t painful, just odd. But he had noticed that it was hanging around more and more. He decided to make an appointment with our doctor. We love our doctor to death! It was unusual for him to see her so I knew the “feeling” had gotten more annoying.

April 22, 2010: Tim went to see Dr. Grace to talk about his sensations. Grace is a very thorough doctor. She calls herself a “vampire” because she runs so many blood tests if something seems unusual. She isn’t over the top, but definitely gives us a feeling of confidence with her attention to the details we talk about.

The clinic notes say “Here for abdominal pain,” although Tim preferred the term sensation to pain. It says the pain worsens with deep breaths and that Tim has been worried about his condition. He weighed in at 157 pounds. “Appears healthy and well developed. No signs of acute distress present.” All good news.

Treatment plan? Several blood tests are ordered (of course, what else from a vampire?) in spite of the fact that Tim can almost be labeled “needle phobic.” He detests them so much, that he avoided a blood test for over a year, even though it could have saved us hundreds of dollars on our insurance!

Urinalysis. Standard, I assume. She also ordered an abdominal ultrasound and two chest x-rays. I think her guess is gallstones. If that’s the case, they will probably want to remove his gallbladder. It’s not a necessary organ anyway, so no big deal. Oh, and “Observe and call if any worsening.”

Luckily, our doc is quite resourceful. She got Tim in that same day for his ultra-sound.

April 28, 2010: Dr. Grace informed us that Tim indeed appeared to have gallstones and would need to have his gallbladder out. The ultrasound reads something along the lines that the problem may be related to “sludge and stones.” That’s quite a visual.

She referred us to Dr. Wright, one of the best in the area. We chose Grace carefully for her dedication and brilliance. Her referrals are always nothing less.

Tim had his first consult with Dr. Wright today. I decided to attend appointments with him from now on. I have a need to be informed and I think Tim likes having me there. Dr. Wright explained the laparoscopic process. It’s all so simple now. Not even any big incisions. He just goes in through Tim’s belly button and sucks out the gallbladder. He even made it sound kind of funny.

It’s a standard operation; doesn’t even require an overnight stay in the hospital. Recovery period is only a few days before he should be able to return to work. Tim is an incredibly hard worker and hates to miss it so he’s glad about that news.

Dr. Wright had read the ultrasound reports also, and there was a sentence that said there was an “Impression that contained the possibility of a gallbladder mass or tumor… blah, blah… neoplastic process that should be considered.” Obviously, that’s not a direct quote, but it truly does sound like Greek sometimes.

It wasn’t terribly concerning, but being a great doctor, he is also thorough. He asks Tim to schedule an MRCP. We’ve never heard of that before so he explains it’s like a super-detailed MRI. Okay, we understand that. It needs to be done at Mercy Hospital. Probably only a half-day off work, also a relief. After Doc gets the results, he will schedule the surgery.

April 29, 2010: Tim went for his MRCP test and I accompanied him. We won’t get the results until our next appointment.

April 30, 2010: Today we went to a Buffalo Bison’s baseball game. Frankie was in Cub Scouts and had to walk in a parade there in uniform. It was sort of a good time — it’s always good to be with family. But Tim complained several times throughout the game. “I can’t wait to have this gallbladder taken care of” became the mantra. The discomfort was clearly steadily increasing.

Otherwise, it was an uneventful night until my father got hit in the face with a flying t-shirt from one of those shooter guns. Nailed him right in the glasses. After a ridiculous chat with the EMTs there, I took him to the emergency room. He ended up being fine, but I knew the paramedics at the stadium did not do anything close to what they were supposed to do.

It makes for a good story anyway. I had to chuckle when I filled out the papers in the ER. Under what happened, writing “hit in the head with a t-shirt” seemed pretty funny.

May 3, 2010: Back to the surgeon. It’s a relatively quick appointment. The MRCP results show nothing of concern. Whatever the reader saw in the first sonogram is not seen as a concern in this more sophisticated picture. The “impression” could be explained as gallstones. The ducts were not constricted. There is moderate fat in the liver, which often happens with age. What does that all mean?

Bottom line — “There is no contraindication for surgery.” We’re glad it’s a go but also thankful for his thoroughness. Better safe than sorry, right?

May 5, 2010: Back to see Grace, our family doctor. This time the agenda is listed as “pre-op for laparoscopic cholecystectomy.” Geez, why are medical terms so long and impossible to pronounce?

Tim weighs in at 156, just one pound less than the last appointment. Check. There is a super long list of questions, all with negative answers. Check. (I guess the medical world is one of the few places where “negative” is actually positive news.) “Medically cleared for surgery. Labs and EKG are within normal limits.” Check.

This is the first time we see a diagnosis on paper, compliments of Dr. Wright, Tim’s surgeon. 574.10 Calculus Gallbladder with Other Cholecystitis without Obstruction. We don’t know what most of that means.

But it doesn’t seem important to know either. Simple gallbladder surgery. Since telling people about this, at least a dozen people have said “Oh yeah, I had that done, it’s a cinch.”

Chapter Two: A Lot Can Happen in 24 Hours

Friday, May 7, 2010 Morning: Today is the day Tim gets his gallbladder out. Then he has his short recovery period and can go back to eating normally. We scheduled surgery for a Friday so he will most likely be able to return to work on Monday.

Today is also the day of Frankie’s Mother’s Day program at school. Surgery is scheduled for the morning so hopefully, by the afternoon my Dad can just bring Tim home from the hospital while I am at school.

You know how things go at the hospital. Delay after delay, little communication. One surgeon, scheduled for many operations, all of which can develop a life of their own.

Afternoon: I end up leaving the hospital and heading to Frankie’s first-grade classroom before Tim even goes in for his procedure. I’m a little bit nervous because surgery is still surgery.

I see Frankie’s friend’s mom on the way in. We chat and I tell her I’ve come from the hospital and will have to return after the presentation. She informs me that she has had the same operation. “No biggie, not even scars. He’ll have no problem,” she says. I let her know we’ve heard that a dozen times and we are relieved.

Then Frankie and his classmates brighten the day with a poem and song about what great moms we are. I usually stay and chat, but leave quickly to get back to the hospital. I arrive to find that I haven’t missed his surgery at all. He still hasn’t gone in yet.

Now Dad is relieved of watching-Tim-duty and is reassigned to go-home-and-get-Frankie-off-the bus-duty. Thank God he is around. My family has always been pretty amazing when it comes to helping each other out. 

Poor Tim is just so sick of the whole thing by this point. Sitting all day in the hospital, waiting after a few weeks of stomach annoyance and not being able to do his favorite thing (eat!).

Finally, about 6:00 PM, they took Tim in. I was sitting in the operation waiting room by myself. I don’t remember what I was doing. I think I was people watching and mindlessly watching TV. I rarely watch TV, so once in a while, it’s a nice distraction.

I don’t remember what time it was when Dr. Wright appeared in the waiting room. I know I was surprised that he was done so early, but not alarmed. He motioned for me to come over to him. He took me into a room and shut the door.

I had a slight feeling of panic at the closed door but quickly dismissed it knowing how important adherence to the HIPPA laws is these days. Generally speaking, I can be very calm, even in a crisis. I keep my head on, pay attention, and ask the right questions.

Dr. Wright explained that he was unable to remove Tim’s gallbladder. He said they usually go in and suck it out through the belly button, which was the type of incision he made. However, when he got in, he said the gallbladder was hard as a rock. He said it was like trying to take a pair of tweezers and grab a piece of the wall with it.

You just can’t do it.

The “right upper quadrant” was moving together. When he pushed on the gallbladder, everything moved with it because it was stuck together. This indicated possible neoplasticity. Okay, then, now what?

One option would be to pull out and open him up, just like they used to do in the old days. They could get it out, but recovery would be longer as it’s a more invasive surgery. However, he didn’t recommend that.

He then showed me several color photographs of pictures he had taken of Tim’s insides. (Wow, you’ve got to love technology, even though it wasn’t a very appealing picture.) He showed me the color and marks that looked like the canker sores you can get in your mouth, etc.. He wasn’t sure what it was and wanted to get a biopsy. It was these marks on the surrounding areas that concerned him most because that meant things could have spread already.

It was Friday though, and they couldn’t run labs on the weekends. I asked him the key question. “You are an experienced surgeon and I realize you cannot say anything for sure, but what is your best guess?” “Cancer” was his response. Now I start to shake. It turns out “neoplastic process” is a nice term for cancer. Technically, it’s “an abnormal new growth of tissue.” (A pregnancy actually fits this description too, but usually, the term has negative connotations.)

We continue to talk. He says the medical call is mine to make. He can go in and take out the organ, or take some biopsy samples and pull out until more tests are done.

Holy crap! I’m not qualified to make those kinds of decisions!

But then I remember that is why we do our homework so well in the beginning. That is why we pick doctors we can trust. I ask him what he would do if it was his wife. There was no hesitation — pull out. Good enough for me.

Later, we were told by the cancer experts how lucky we were to have him for our surgeon. Many would not have made that call and it was clearly the best medical decision.

This is the first of many encounters we will face where tests indicate one thing, but the actuality of what is happening is entirely different. The best a physician can do is make a decision based on what the evidence points to. If the preliminary tests had shown anything else, he would have not attempted this surgery in the first place.

Ah, to be human.

Evening: Now I am by myself again and completely in a daze. Thousands of movie scenes run through my head. I think to myself how it really is like they say in the movies. You sit in this waiting room and the doctor comes and compassionately and kindly forever alters your life.

After a few seconds, I kick into action like I usually do. The first call is to my dad. He asks me if I want him to come back to the hospital. I hesitate, but who am I kidding? Yes, I want him to return.

Colin (our 26 year old) is home so he can stay with Frankie. I know Dad won’t be able to do anything, but I hate being alone. I call Tim’s brother Roger next. We don’t communicate with them on a daily basis so I don’t know if they are home, but they literally live right down the street from the hospital.

Yes! They are home and offer to come to the hospital also. I’m grateful and I know Tim will be also. A couple of calls to my church pals and minister to keep me occupied while I’m waiting for the next thing to happen.

Soon the four of us are in a waiting room on the recovery floor. They are going to bring Tim through, but he’s not there yet. I have another conversation with Dr. Wright. He is extremely apologetic, but still has more operations to go. He does not think he will be available when Tim gets out of recovery.

The implications of this begin to settle in as I am waiting. I am going to have to be the one to give him the news. Oh shit. How am I supposed to do that?

Finally, we see Tim being wheeled in his bed to his room. He gets a glimpse of us and raises his hand with a “big thumbs up” in triumph. He is elated to have this thing over with. My heart dropped as I knew his elation would soon be crushed.

I went into the room by myself initially. He starts chattering about how good he feels before I can say anything. I sat next to him and tried to talk in the calmest, most unalarmed manner that I could. “Baby, they weren’t able to take your gallbladder out.”

He truly thought I was joking. When he realized I wasn’t, he was rightfully aggravated, and then the flood of questions started. I started bumbling around but in a truly gracious moment that I was incredibly grateful for, Dr. Wright appeared in the doorway. I was so ridiculously happy to see him.

A wife shouldn’t have to tell her husband he might have cancer.

Doc came in and explained everything again. Only this time, he had snagged a picture of what a healthy gallbladder looks like so we could compare. I suddenly understand on a much deeper level. To me, it didn’t even look like it could be the same organ.

Holy Shit Again.

The family had come in by now. Overall, Tim appeared to handle it pretty well. It was clear that we wouldn’t know anything until pathology reports came back, and it was clear that wouldn’t happen over the weekend. We all did a pretty good job of not freaking out too much. Soon Tim was signed out and we were able to go home.

The middle of the night: We lay in bed chatting for a while, trying to sort out what we had heard. We didn’t want to assume the worst, but we didn’t want to put our heads in the sand either. How do you find yourself suddenly lying in bed with your spouse discussing such things?

He looked at me kind of sheepishly and said something about how weird it might seem given the circumstances, but he wanted to make love. I actually didn’t think it was weird at all. Even though the mood was sobering, it seemed like such a life-affirming thing for us to do. So we did.

Several hours later, I was awakened. I wasn’t sure what it was because it was a sound I didn’t quite recognize. It sounded human but was foreign to me. I realized Tim wasn’t in bed so I got up to investigate.

I found Tim pacing in the kitchen, sobbing. It was a kind of crying I hadn’t heard from him before. In fact, I don’t think I had ever heard anything quite like it from anyone.

It was a man, coming to grips with his mortality.

It was gut-wrenching and unfamiliar. Fearful. We all know intellectually we will someday die. But this was a man having a visceral experience that cannot be described well. My heart broke with his as I held him.

What was in store for us?

Read chapter 3: