I was discharged and sent home.
Before anything, I have to acknowledge the goodness of God in giving me the absolute best nurses for my last few days in the hospital. Not having family around due to Covid, means relying on the nurses even that much more.
Selina was able to be on my service every night and during the day I had Kate, who previously helped my dad when he was at NIH. She’s amazing and would stay and visit with me after taking my vitals to make my day go by faster. She thought of things I didn’t even know I needed. For instance, she even made sure to give me my dose of Advil before I got on the airport shuttle because she said it would be very bumpy. She was right. Again I will say, nurses do not get the credit or appreciation deserved. They are angels.
The last couple of days have been much less dramatic than the first portion of my stay. If I were to lump this into categories, it would be nutrition and pain.
Eating and drinking are two things that come completely by nature. Babies are innately hungry and thirsty. It’s simple. Therefore teaching myself how to eat and drink in a new way is completely foreign.
Let’s say, on a typical day…a typical breakfast you may run to Starbucks, grab a breakfast sandwich and a latte and consume both within a half hour…bite here, sip there, chew, swallow, drink…maybe you take a little longer to linger on your latte. Maybe you’re drinking your latte in the car and Britney comes on and you have to belt out to Stronger in between sips. Maybe you get a phone call and you chomp a bite of breakfast sandwich down quickly in between sentences. This seems…normal, right?
Let me now introduce the new rules I have to apply.
Food and liquids cannot be consumed together. Without the stomach, the intestines can’t handle both at the same time and will create a flushing situation.
Liquids can only be consumed at least 30 minutes after food has been finished…or 30 minutes before I start eating. Again, it’s too much for the intestines.
I no longer have a stomach to help grind up my food. Now I have to take extra time to chew my food. For instance, this morning it took me one hour to chew one boiled egg white and four baby bites of oatmeal.
It’s also important to wait in between every baby bite so the bite before has time to wiggle its way down the esophagus. This takes an incredible amount of patience. I will say, the couple of times I have rushed, pieces have gotten “caught” in my esophagus and it is a very odd sensation breathing through the body’s attempt to work it down.
Right now, my small intestine hasn’t stretched at all. It is very mad at me and hasn’t caught onto the program of what’s happening. This phase (phase one), usually lasts about 6 weeks. Over time, the intestine will get with it and stretch out a bit allowing for more food at once. But that’s to come.
I need to avoid taking in a lot of air when I’m chewing so I am chewing in silence and without breaking to talk. Why? Because the stomach can handle it when you open your mouth between bites and take in a big gulp of air with your next bite. The stomach can stretch and hold the air and your food. The intestines cannot.
It is so much to learn. I know I will find a rhythm. I’m very good with rules and schedules. But it seems overwhelming. I have to get creative with ways to get liquids and protein in at every meal.
Protein slows the digestive system and makes things easier on the intestines, so before I have anything else to eat, I have to eat some form of protein. One of my favorite foods right now is apple sauce. It goes down easy, it’s sweet, and it tastes fresh. But before I can eat apple sauce, I have to eat either yogurt or peanut butter.
This is no longer about what tastes good, but what fuel my body needs. I no longer feel hungry. Instead, when my body needs food, I now borderline faint. I get incredibly light-headed and weak. Again, it’s going to get better. This is just a huge learning curve.
There are plenty of seahorses who master meals like champs. It will get better. I am just at the starting line.
They switched me to oral pain medications and while they offered stronger options, I decided to stick with Advil and Tylenol.
My chief complaint is a stabbing pain in the left side of my lower abdomen. I’m not sure when it started, but I started to feel it once the epidural wore off.
It’s an odd pain. It happens sporadically. It happens often. It happens after I eat. It happens after I drink. It happens when I sleep. I’d say it happens when I think, but I don’t want to sound like a bad Dr. Suess rhyme.
The pain darts in, and on a scale of 10, the pains come in hot at about an 8. They stop me in my tracks and I usually have to hold onto the nearest wall and breathe deeply until they pass. I’ve talked to every doctor on my team and no one has a great answer for what it is….mostly because the pain is in an area untouched by surgery.
I told them I looked it up on Web MD and was worried it might be my spleen. They informed me that this is not where my spleen is located. I reminded them on an episode of Grey’s there was a case of a traveling spleen…you can guess how well that went.
The most logical response is it is a muscle/ nerve issue that needs to work itself out. The new process of food/liquid intake makes the intestines very confused and unsure. I think my intestines are pouting.
When Dr. Davis was giving me tips on helping the pain he said walking (of course) and also stretching. And then he demonstrated which stretch I should do. If you’ve been to a Baptist church, you’ll know the move well: hands raised above my head and stretched out in a wide V.
A position of praise and surrender.
What a God wink reminding me that when I feel the most pain is when I should take a position of praise. If you’ve ever questioned God’s sense of humor…let me ASSURE you.
NIH is where the abnormal is normal. Being in the oncology department opened my eyes. Yes, my situation is less than desirable. Yes, I wish I still had my stomach. Yes, I want to chug a gallon of water. Yes, I’ve thrown myself tiny pity parties (without cake). And then I see people down the hall who are stage IV wishing they had been able to catch it earlier, like me. Parents watching their children consumed with a disease that does not hold back.
With that shift of thinking, I’ll take my new eating schedule. I’ll take my nerve pain. I’ll take the esophagus contractions. I’ll take it.
And when the pain is too much, I’ll stretch my hands to the sky and offer it to Great Physician.
One thought on “Homeward Bound”
I can do relate to your struggle. My second stem cell transplant journey had many of the same experiences you have faced. But God… He is faithful and true. He is THE healer. He loves you and is not through with you here yet.