Pain by Request

Tomorrow is Debra’s birthday, November 16th. Each year it sneaks up on me. I set reminders. I send myself notes. And like a bad sitcom character from the 80s, it still surprises me in the last few days leading up to it, “Wha??!!”

Each year in the past, I have run down to the car wash to get a card. Which is curious. Why are all the good cards at the car wash? But they are. They are far better than anywhere else. Anyway, I go there and get a blank card. And I write a note to her that is always intimidating to start, but once in process makes an attempt to express my appreciation that she picked me, and that she stays with me as a best friend. Even now, with all my ailments, she is with me. What a beauty both inside and out. 

This time was different though. I really did have a pretty good excuse for not getting a card or writing something in advance. 

A few weeks ago now, I was sitting on the front porch of a friend’s house and he told me something that made me stop and think. He said he liked my writing but that I was only giving him (and anyone else reading what I write) “half the loaf.” He felt that I was short-changing anyone reading my various notes because I wasn’t sharing the pain that accompanies these experiences; the pain for me, for Debra, for my family. This input is from a thoughtful guy, and the feedback was unusual. It wasn’t expected. And I have been mulling it over. 

So I decided to relay the last few weeks of our experience in an unvarnished style to see where it takes me; takes us. I want to see what it reveals about what’s inside, going unsaid, to me and others. What am I denying to myself? And what am I denying to others? 

I thought I was being pretty honest, but learning these days is never boring, so I am diving in. I apologize in advance if this is tedious. It’s kind of a “stream of consciousness” account of the past few weeks, hitting on painful points. 

On Tuesday, October 20th, I started up with chemotherapy again. I have been off since June 24th of this past summer. Tuesday I got an infusion of Gemcitobine that kicked me flat. I was out that night with nausea and fatigue by 8 pm. It was a harrowing night with dramas for Debra and Cate, but I was too sick to help or be present. I could hear the discussions and tears but I could not rally myself from my bed no matter how many times I told myself that these are moments I don’t want to miss. That was the beginning.

Deb was amazing and wise with Cate, and Cate came through as strong as ever after a long night. I was nauseous all day the next day, but worked a few hours. I worked again Thursday and Friday, again nauseous and uncomfortable, but pulling together various things to keep my job in place and avoid any income disruption or family health coverage. My job is important to me, and so I work hard to put in the hours and value when and where I can. It’s a contract I hold dear. 

The weekend came and with it some relief. Since I didn’t have to sit and work, I was able to keep busy walking around doing various things and that helped distract me from the constant belly cramps and discomfort I had been feeling since the Tuesday before. 

I don’t make notice of these discomforts to my family, but Debra sees. It worries her. I can tell her stress is aggravated by my pain and hurting, so I try to suppress it as much as possible. Sometimes I scratch my belly to change the sensation I feel. She catches me sometimes, and I see her worry. 

We support one another though, me through my slight of hand tricks to hide my discomfort, and her with a little bit of supportive belief that it’s not hurting much. 

On Monday, October 26th I went into work and worked a full day. Again on my birthday, October 27th, I was in the office and working with people to pull together articles and product information. I left at about 6 pm and went home to relax with my family. 

My birthday night was wonderful. We carved pumpkins. Ben’s was Frankenstein and he did most of the carving himself with my hacksaw. He was aggressive, but careful. I was careful too ☺. Cate’s was nicknamed “Cleveland.” And Will’s had pumpkin barf hanging out the mouth. 

When Ben touched his own pumpkin’s “pumpkin barf,” Ben barfed some in the trashcan and we all laughed, including Ben. It’s a long-standing tradition to carve these pumpkins, and always generates a set of pictures that we cherish. 

Wednesday, I went to work again and had a working lunch with a new colleague. At lunch my stomach began to really hurt; cramps would crawl across the front of my abdomen from left to right, making me stop walking, or talking, and bear through them.

I worked in the office until about 3:30 and then returned home to work in my office. I kept after it until after 5, but ultimately had to come downstairs to let Debra know what was going on. “Deb,” I told her, “I know you will want to take drastic action, but just let my stomach work through this. I will be okay. But I need to lie down.” She agreed to let me lie down to see what happened, and I laid on our bed, ready to bear it out.

The pains continued but worsened and intensified. Each two minutes, I would be wracked in pain up and across my abdomen and have to breathe through the ensuing 30 seconds while my guts contracted and moved, causing me face-twisting pain and labored breaths. This was not normal.

About an hour later I called to Debra to tell her I didn’t think it would stop, and that as much as I hated it, we needed to consider going to the ER. She called our dear friend Julie Sweat and she confirmed that we should head in.

We arranged the kids to be with Deb’s parents for the night, and left for Seton. At Seton I received dilotid (synthetic morphine), which did nothing for the pain. Next I received morphine, which stopped my pain cold, along with my bowels.

It also sent me to kooky land where I lingered and conversed with my poor wife, holding my hand by my ER stretcher at midnight on a Wednesday. We had already been through a lot. But this pain was new, and we were uncovering some new issue with my broken body. Her high stress was made even higher, and I was lying next to her, totally unable to do anything but look at her and tell her I was sorry she was having to go through this with me. Sorry that my body was screwed up, causing us so much uncertainty and anxiety.

Seton was a short stay. I was in for Wednesday night through Friday night. I worked half to three-quarter days on Thursday and Friday. Health wise, we discovered that the pain was from a small bowel obstruction, and that they generally dissipate over a few days. I ate soft food for a day, and went home in time for the kids’ Halloween costumes.

I got to drop Will at a friend’s house for a Halloween party. He wore his Kyrie Irving jersey. And then I got to go sit on the front porch at the Donovan’s on Spring Street and engage with hundreds of trick or treaters and several dear friends. Halloween is my favorite holiday for a lot of reasons. It always has been. My birthday falls so close to the day that I always had Halloween-themed parties. And I have always loved the cool weather, fall colors, late nights, candy, and costumes. That was Saturday.

Sunday I awoke with the same terrible pains at about 5 in the morning. Debra went about arranging for the kids to be in various places, which is hard on them and us, and then she and I left for MD Anderson late that evening to see if we could get to the bottom of the issue. That was November 1.

I entered the ER here at MDA, and had to stop several times, gripping the handrails while walking to my room because of the pain, which was now nearly constant at very high levels (5), with points of severe intensity (8). The nurse helped me onto the stretcher and I immediately threw-up. There was nothing except digestive juice, but there was a lot and it alarmed the health staff to move quickly into action.

They numbed me up with morphine again and put me through a CT scan, which provides images of your bowels. Again, the analyst saw the small bowel obstruction we first saw at Seton, but this time it was fully closed, causing intense pain as the bowels tried to push whatever was in my intestines through from one side of the blockage to the other.

To solve the situation, the ER staff shoved a 55 cm tube up my nose and into my belly to suck the contents of my stomach out to relieve the pressure and pain. This is called an NG tube. The process takes about a minute and a half, and is very painful and uncomfortable as the nurse advances the tube and the patient tries to “swallow” it. Deb left the room as I struggled through the process. Afterward, they tape the tube to your nostril and apply suction through a container on the wall.

Over the course of the next two days, it pulled two liters out of my belly and intestines. The pain was still there, but had eased relative to its peak. I was fairly numbed to the world with morphine. I was down to 138 pounds from 151 at the beginning of the ordeal.

We had various doctors stopping in, and late in the second day of being at MDA, we had a superb doctor named Dr. Bednarski come by. It was dark outside and Debra and I were exhausted from suffering and stress. I put that Dr. B is superb because indeed he has turned out to be just that. The first night we met him though, he bluntly told us that I might have cancer throughout my abdomen, and that as a result I might need to have a large chunk of my bowels removed leaving a “stoma” bag on my hip for the rest of my life. This is a bag to hold your intestinal output because you never use the bathroom again.

After all the physical suffering I had been through and all the stress Debra had been through, this information was just overwhelming. We wept.

I am active and involved with my kids. To have a bag of intestinal fluid on my hip would just be devastating. To have cancer throughout my bowels would be a death sentence, and a long and painful one. It was a dark, dark night.

The morphine ultimately delivered me to dreamless sleep, but Deb had to go home alone. Through my morphine haze, I can still remember being deeply troubled for her as she left the hospital, and I lay helpless and drugged, unable to comfort her or help her in any way other than to pray for her comfort and strength from family, God, and friends. All of those people came through for us. But that was a long night we won’t forget.

Over the course of the next few days, we waited to see if the bowel obstruction would “just resolve,” as some 90% of them do. Of course it didn’t. But the fluid coming out of the NG tube reduced and changed color to something less alarming, so the staff decided to remove the tube. It felt wonderful coming out, and I had relief for some time.

But within a day, my stomach was cramping with intense pain again. I took a shot of morphine and immediately threw-up. The doctors decided the blockage was not open, obviously, and they needed to reinsert the NG tube.  

I had to go through the whole process again, but this time with the tube advanced to 65 cm instead of 55 cm since the last tube was hurting me pretty severely. The new tube took three tries to get into my stomach. I was on morphine, atavan and dilotid. (Today, November 15, the scab from the first tube is finally coming off my nostril. The second tube did not hurt me nearly so badly, but was very uncomfortable. My lips peeled and my throat was constantly in pain. Swallowing hurt.)

Since Sunday, November 1, I had not been able to work due to pain and / or nausea. This was very stressful since I feel obligated to work every moment that I am physically able to do so. The company is taking care of me and I need to honor their commitment. This added a great deal of stress to Debra and me about my job security.

Meanwhile, the surgical oncology team decided to take me to surgery on Tuesday, November 10^th. The surgery turned out to be successful – no cancer and no stoma bag!! Thank you, God! I heard from my other doctor, Dr. Bellister, a fabulous person, that as soon as I was wheeled from the operating room, I came out of my anesthesia and said, “Stoma? Cancer?” To which he replied, “Nope. Neither one.” He said I was the earliest patient he had ever seen who asked these questions. We laughed about it, but the stress of those two dooming outcomes loomed in my head even as I slowly pushed my way into consciousness.

I have been once again rerouted inside. However, I could not go to the restroom by the allotted time that night, and without going into details had to have a procedure that hurt terribly to allow me to empty my bladder. I worked all night to use the bathroom after that, and finally did at about 5:30 am. If I had not by 6 am, it would have been the procedure again. Suffice to say I was motivated. I slept most of that next day with Debra by me.

Over the course of the next few days, I developed a cough and sneeze from the NG tube. As you can imagine, with a new scar on your stomach, stapled closed, coughing and sneezing is very painful. I still have it, and continue to awaken many times at night just before a coughing fit or a sneeze. Drinking water helps, so I keep some handy.

And we also discovered that the reason morphine is so effective at bowel pain relief is because it completely shuts down my bowels. Since I was trying to get them moving after surgery, I greatly stepped back my pain medication so the bowels would not be paralyzed. That increased my surgery pain of course.  

Then my biliary drain came loose, moving out of my exit wound by about 3 inches, and bile began to leak down my stomach while I was walking the halls to get my bowels to wake up. (This was one of those moments where I just felt like the world was against me and my family. I mean seriously. What next?)

The surgeon Dr. Bellister showed up late in the day to take a look. I told him I was worried about walking with the loose drain. He absolutely wants me to walk, so he opened a surgical kit, took out a needle and suture, and inserted a set of retention stitches with no topical anesthesia. I don’t resent this, but I tell you simply because it happened and I want to honestly portray all we have been through. I love that surgeon, but those stitches hurt. As fate would have it, Deb was grabbing a chicken sandwich downstairs. She missed the whole thing, and I am happy for that. My nurse, Camille, was a stand-in hand to hold. She was a great stand-in.

Then the surgical IV placed on Tuesday came loose and we had to replace that. Removing it was terribly painful because the tape had folded over on itself in several places, trapping my wrist hair and taking large chunks of it out when we removed the IV.

The surgical anesthesiologist did not shave my arm even though she assured me she would. If I ever see her I will tell her that she should have kept her word, after I refrain from punching her in the chops. Pulling that IV out hurt a lot and it would have been so easy to shave my arm. It would have helped me avoid so much discomfort.

The nurse that showed up to put in the new IV used a sonogram machine to do it. I have never seen that before, but somehow, it took twice as long to do it and hurt twice as badly. I am not a fan of the “new method.”

Debra finally went home Saturday morning and was reunited with our kids. They have been with her parents and friends for two weeks now. Each one is doing okay, but it’s hard to not have a dad around. Cate is living with the Mouritsens and studying for finals. She has been doing well, and the Mouritsens have been a wonderful stand-in family. It has been very reassuring to talk with Cate and the Mouritsen family during our absence.

Will is doing well too and showing no visible signs of the stress. He went through tryouts and made the basketball team while I was in the hospital. This was so hard for me. He and I take walks and talk about his days. These tryouts have been on both our minds for weeks and I was absent for the whole ordeal. I think maybe Deb and I were happier to hear he made the team than even he was.

Ben has been doing so well. He talks with the wonderful Jennifer Dugan at Trinity and she sends Deb and me updates on him and how he’s holding up. But he cracked a little on Saturday after a pretty tough basketball game. His opponent gave him an “Indian sunburn” while guarding him, dead-legged him, hit him in the head, and punched him “about five times.” I talked to him on FaceTime and he showed me where his arm was red. I told him I wish I had been there to see his toughness and how he fought through the aggressive behavior.

But later he broke down to Debra and told her he wanted things to go back to how they were before I had cancer. He wanted me there at the game cheering for him. That is so hard on Ben, but it’s also hard on Debra and me. I miss those opportunities as much or more than any of my kids. I cherish them, and in a strange way, it’s reassuring to hear that Ben wanted me there. As I have experienced, that will not always be the case. So, while it hurts now to be absent when I was needed, it is also dear to me.

Debra is staying again home Sunday and Monday night the 16^th to be with our kids. She will be with Ben at Trinity Chapel for her birthday, which is a big deal for Ben and her. I will get snaps from Deb’s supportive friends in the audience. I am so happy she is going to stay.

I go in tomorrow to have the biliary drain evaluated. They will likely replace it, and I will be sleepy and loopy the whole day. Deb’s absence will be a welcome gift since she will be with our friends and kids tomorrow night instead of beside her loopy husband. How I wish I could be there. That is painful for both me and Debra.

The NG tube came out two days ago now. And the doctors tell me I may be able to leave by Wednesday, November 18^th. I have progressed from “clear liquids” to “real liquids” diet, and so far I am keeping them down with very little nausea. My hopes are high that I will be home soon. My physical pain has diminished, and I need to nurse the mental and emotional pain to get healthy again.

I have written my letter to Debra, my very best friend ever, for her birthday. I will send it late tonight so she gets it first thing. I am finally feeling better. I can’t wait to get home so I can try to relax.

But first I will have to resolve work so I can be sure my family remains safe. I will try to get back there by Thursday so I can put things right. Until they are back in place, my anxiety is high.

I am not sure what this note has done for me, if anything. I will put it out there and see what different reactions come from those who read it and pray for us. The reactions always come from both expected and unexpected people, in both expected and unexpected ways. We are always grateful for them. They are a wonderful “narcotic” that has only positive side-effects. Thank you in advance for anything you want to say to us.

If this has helped you in some way, I am grateful. If it’s not been helpful, please just disregard it. My family and I are not seeking sympathy in any way. I am feeling around in the dark a bit here, following some advice that I hope will minister to some. I don’t generally talk about pain, and probably won’t too much anymore. It teaches me lessons. It helps my family move forward by watching it leave. I put it out of my mind and it recedes behind life’s forward momentum. Go Life.

Behind me and my family there is so much physical pain, mental stress, and emotional pain. Ahead of us, there is more. Some of it is too big to get my head around. It hulks darkly beyond the horizon and will punch us in the gut before we’re ready. We’ll reel and teeter, but recover. It will not conquer us. It will fall!

Thank you for praying for us and sending us your positivity. We can use every focused and fleeting instance of goodness you send. We are weathering this, and we will triumph over it in one way or another, but your support is so precious and crucial. Thank you for helping us. Your friendship to me, and to my loved ones is a gift that I never fail to appreciate. Just know that whatever you do for us helps. All of it. Thank you.