Two meatballs

We were doing so well with Rich’s output. His daily numbers were hovering around 200mL. I sent an email to Dr. Shen who did the surgery back in June with photos of Rich’s incision/stoma and the giant Excel file of doom with his fistula output numbers.

Dr. Shen agreed that we could experiment with some low residue food. If that increased Rich’s output we could back off, but it was worth a try. On Thursday at lunch, Rich ate a Vietnamese spring roll. It’s basically rice noodles in rice paper with one piece of lettuce and one strip of pork. That went down just fine.

The next day we went for dinner while running errands. Ian wanted pizza so we stopped at Fazoli’s. Rich got a meatball sub with the idea of only eating one or two of the meatballs and giving away the rest. He ate two golfball-sized meatballs and according to him they were delicious. But while sitting at dinner, his output went up by 200mL alone. The next day his output was 1350mL. Needless to say Rich was discouraged.


On Sunday we had to get on a plane and that has been increasing his output as well. We ended that day with 1500mL and a very sad mood. But Monday was better and he only output 500mL all day. Today has been equally mellow, despite getting on a plane again. So I’m hoping we are working out way through that experiment.

This has all been a lesson in patience. After Rich ate the meatballs and told friends that it increased his output, several folks said, “oh, well beef is very hard to digest.” To which he said, “Why didn’t anyone say that before I ate them?!” And really beef and steak are what he’s craving. He’s not craving potatoes or apple sauce or rotisserie chicken.

But we will obviously have to take this very very very slowly. One bite at a time.

No news November

It’s been a slow slog of a month for us. Rich’s output is going down with the exception of days he gets on an airplane. The same thing that all that high altitude pressure does to your ears, it does to his fistula and literally pushes stuff out of him. But it’s a known thing and one we can work around.

Fistula output through 2014-12-01

We need to make a follow up appointment with the surgeon in NC now that the fistula is on the ropes and hopefully about to get knocked out. Rich has been very tentatively experimenting with food. Mashed potatoes and cranberry sauce at Thanksgiving. Seaweed salad at the sushi restaurant. We’ve discovered that after five or more months of not eating real food, his gums have grown down and become even more sensitive than usual, so chewing is difficult. Just one more thing on the list to acclimate to. I’m hoping we get to the burrito stage very soon.

That lower wound that he had from the original surgery just won’t give up. It’s down to the eraser end of a pencil (originally it was about 2″ across and 4″ deep) but just won’t close up that last little bit. So we just keep putting gauze over it and waiting.

The ostomy bags are working much better, thanks in part to significantly lower output. I can’t remember the last time we’ve had a leak (knock on wood).

Rich has taken over a lot of his medical maintenance. He sorts his own TPN supplies. He mixes and delivers his own TPN now (thanks to extensions on his PICC lines). I’m just in charge of ostomy bags and lower wound dressings because he can’t easily see them to do himself. He’s also doing his own laundry again. Hallelujah! Now that Taj MaPorch is done (I owe everyone an update on that as well), we are both able to work in the office again with the exception of Wednesdays when he has the nurse come for labs.

After such a difficult November of barely perceivable progress and lots of anxiety, I’m going all in for Christmas this year. We are cash poor this year (see Taj MaPorch) but I’m trying to find all the things I like best about this holiday season right now to spread some cheer. We started the Christmas book Advent countdown last night and that was a rousing success. I’m a sucker and let Ian pick two books on the first night, but thankfully I still have enough to get us through Christmas Eve night. I encourage everyone to use those 20% off Barnes & Noble coupons as well as after Christmas sales to prep for next year if you haven’t already.

Christmas books wrapped for Advent countdown

So we’re hanging in. Send us a card or festive letter to add to the holiday cheer around here.

1863 Edgewood Avenue
Norfolk, VA 23503

I am not pregnant

Let’s just be clear from the start. I don’t want anyone to only read the first few sentences of this and hurriedly offer congratulations. I am not pregnant. No fetus is in progress. Ian is still an only child.

Rich is not allowed to conceive a child while on the trial drugs from Sarah Cannon. I don’t think they would kick him out of the study for it, but there are lots of warnings in the paperwork. After his previous trial, he had to wait 90 days before he could conceive to ensure the meds were out of his system. He took his last pill on June 18. That means he was cleared to conceive as of September 19. We were already back at Sarah Cannon on September 15 discussing the next trial for which Rich was eligible.

I had stopped taking birth control pills in August in anticipation of trying again, but to say that we had a small window to conceive is an understatement. We went to the Jones Institute to freeze sperm on Sept 22 just in case. My window of fertility was the beginning of October.

We had a lot of sex. This is not standard “we’re in love and excited and going to make a new life” kind of frequent sex. There are IV lines and fistula bags and wound care issues. We have a five year old in our house and frequently in our bed. We’re flying to Nashville for medical appointments. I’m traveling for work. This is not for wusses.

I was so convinced that if we just worked hard we could make this happen. I looked for a midwife. I talked to our doula. But just like clockwork, my period started on October 12. At that point we had been assigned the week of the 27th through 31st for Rich to start his next trial drug. I would be most fertile that same week. It was down to the wire. This is not for wusses.

“Hey honey, let’s pack up all your TPN and wound supplies, fly to Nashville for a week where you will be examined and scanned and injected with mystery chemicals. And while we’re there, let’s have as much sex as possible to race to make a kid. Yeah, I know your fistula output just sky rocketed to two liters a day, but I’ll light some candles and play Sarah McLaughlin and it will be fine.”

We survived that week but only barely. Now we just had to wait and see if our hard work paid off.

It only took me one cycle to get pregnant with Ian. I stopped taking my birth control pills, which I had been taking for 17 years straight, and the next month we made a person. Pretty easy. As my friend says, I could have used Rich’s toothbrush and gotten pregnant.

This time, it’s been harder on many levels. If I managed to get pregnant, I would be 36 weeks when it was time to fly to San Francisco for the American Library Association conference. I would be seven weeks pregnant when I ran another 5K and half marathon back to back. I would be desperate to sleep all the time but still responsible for groceries, laundry, housekeeping, child care transportation, TPN delivery, wound care and that little thing called work. Oh, and logging all my blood sugars and food for 36 weeks. But it all seemed worth it to expand our family as we have wanted and do so without paying thousands of dollars to have it done by the Jones Institute.

Here we are, though, Monday morning of my period week and I’m most definitely not pregnant. That means our great pregnancy experiment has come to a close as quickly as it was put into motion (no pun intended). I’ll go back to the pharmacy and refill my birth control pills for next week.

I did some of my best positive thinking these last two months. I bought prenatal vitamins. I reactivated my account on BabyCenter to calculate a due date. I saved my pants that are too big for me. I let my alcohol supply get alarming low. I made a spreadsheet of my hours to see how many weeks I could spare next summer for maternity leave. If optimism alone could conceive a child, I would give Kate Gosling a run for her money.

But no luck.

I am mourning something that never happened, a life that never even started other than in my imagination. I would like Ian to have a sibling other than Cancer. But as someone told me, no sibling for Ian is worth having a mother who can’t pass a field sobriety test because of exhaustion. We are all stretched thin right now.

Don’t hide your babies from me. Don’t hide your beautiful round pregnant bellies from me. I’m hosting a birth circle tomorrow evening at our office where we all sit around and talk about birth stories, the excitement of pregnancy, the joy of birth, and the trials of motherhood. All those things are still important to me. I’m just cheering others on from the sidelines right now.

I’m going to spend the next six months or so reveling in the body I only recently got back from my first pregnancy. I’m going to buy new smaller pants. I’m going to restock the alcohol in the house. I’ll devour some unpasteurized soft cheese, gas station sushi, and questionable lunch meats. Maybe I’ll do all that while sitting in a hot tub. I’ll get a foot massage. I’ll keep training for my half marathon later this month and the one in March. I will revel in my bladder control. I’ll get my HbA1C back down to something reasonable before my next endocrinology appointment. I’ll keep everyone posted on the status of my #wasbutt.


Just looking

I may have spent the evening online looking at all the black cats at the SPCA. Just looking. I may go look some more at lunch tomorrow.

Goodbye Hiro

Hiro got out through the side porch door on Monday, we think. When we came home Friday there was still no sign of him. After trick or treating, I crawled under the house to look for him but he wasn’t there. I hated our black cat to be missing on Halloween.

This morning we walked the street looking for him but no luck. After we had set up the three pavilions in our back yard to dry out, I wanted to take a picture of them. I was trying to get a picture without our pool in it since the cover had blown in a few weeks ago and a leak has lowered the water level to a good two feet below the edge.

I climbed up the pool ladder for my picture but when I looked in the pool, I found Hiro. He had fallen in and drowned.

We just buried him next to Huxley beside the garage. I miss my cat.