58 days

A lot can change in two months. I don’t look the same. I don’t feel the same. I’m not sure if this is a good or bad thing, but it’s the truth. In the 58 days since I last posted an update, we sold our home, moved, and I started a new job. I’m officially out of my comfort zone, and some mornings I wake up and wonder if I’ve made the right decisions. I suspect that a certain amount of self-doubt is typical when you’re processing change, but nonetheless, sometimes it keeps me up at night.

What else has happened in 58 days? I’ve gained 15 pounds, and I’ve completed three Remicade treatments without any adverse reactions or side effects. All in all, I’ve been blessed with a smooth recovery and not a day goes by that I’m not thankful for that. Of course, I’m not immune to a bad day or a moment of self-deprivation, like when I hear hurtful words about my weight: “Go eat a stick of butter”; “You look like a skeleton”; “People probably think you have cancer”. I’d love to tell you that these words don’t affect me, that I don’t hear them in my head while I stare at the number on the scale, but that’s not true. Of course, it’s possible that some people don’t know what to say, that they want to share their concern or support, but can’t find the right words. I wish I could tell these people that it’s okay not to say anything all.

I look in the mirror each morning and I know that I don’t look the same, but that’s not really the point of my recovery, is it? I’m healthy, I have more energy, and I feel better than ever before – these things are far more important than the number on my scale. The large scar on my abdomen doesn’t even bother me anymore. I see it as a sign of strength, a reminder of what I’ve been through and how far I’m come. It might sound trite, but it reminds me each morning that I’m stronger than I realize.

The past six months, though challenging, have taught me compassion, patience, and simplicity, all of which have improved the quality of my relationships with other people. And why shouldn’t they? I know what it’s like to juggle home, work, and illness, and I know what it’s like to feel as if everything is crumbling around you. And most recently, I know what it’s like to face the harsh reality that I might be done having children.

Earlier this year, before I got sick, my husband and I had several discussions about whether we want more children or if we’re “two and through”. Although we were leaning toward the latter, it’s something totally different when your doctor tells you it’s no longer an option. To be exact, she said it’s not a good idea. I would have to stop Remicade treatment and if I got sick while pregnant, my treatment options would be limited. This information, combined with the statistics, doesn’t leave me with the warm and fuzzies. I think of everything I’ve been through this year and the thought of repeating it horrifies me. I’m practical enough to know that the risk isn’t worth the reward, especially when the baby could suffer as a result, but as a woman it hurts to accept this decision. As my girls continue to grow and my youngest turns 1 in three weeks, I can’t help but feel nostalgic about having a baby. Although I’ve shared these thoughts with my husband, I think this is something only a woman can really understand. I’m thankful for my two healthy girls, and I suspect it will take time to accept that our family might be complete. Of course, I don’t know what the future holds, but for now I need to focus on my recovery and the next 58 days, one day at a time.

 

 

Day 1 of Remicade

Well, I did it. I survived my first Remicade treatment. My doctors have been talking to me about Remicade for months, but my treatment kept getting postponed thanks to my frequent hospital visits. Yesterday, though, it finally came to fruition, and I have to say it turned out to be a pleasant experience. I went to a cancer center for the infusion, which certainly gave me some perspective. The staff was very friendly and accommodating; they offered snacks, drinks, movies, a blanket – anything to make me more comfortable. To be honest, it felt like a much-needed break. I sat in a heated massage chair and took a nap. A nap! As a parent, how many times do we get to take a nap? It felt like something I read about but never had the pleasure of experiencing.

Before I started the infusion, they took my vitals and weight. After I sat down in the comfy chair, the nurse gave me Tylenol, Benadryl, and a steroid to prevent adverse reactions to the treatment. They let the medication set in for 30 minutes; meanwhile the pharmacist came to talk to me. She explained how Remicade works: Crohn’s Disease is an autoimmune disease, so this treatment will suppress my immune system to keep me in remission and prevent future flare ups. Just like any medication, there are risks. Because Remicade will suppress my immune system, I will be more susceptible to infection. I won’t be able to fight off something simple, like a cold as easily and it’s possible that at times it could develop into something more substantial, like bronchitis. This explains why I had to undergo a chest x-ray, blood work, a Hepatitis test, and a TB test to prove that I’m infection-free before I was permitted to start Remicade. The worst potential risk is the increased chance of Lymphoma, but the odds are still in my favor, so I’m not giving this a second thought.

Once we finished reviewing the side effects and risks and the medication had set in, the nurse started the infusion. The infusion ran for two hours and was timed so that the IV started off slow and then dispensed the medicine faster as time went on. I thought I would feel different during the treatment, but all I felt was tired and that was due to the Benadryl, not the infusion. Some people report that their joints feel achy the next day, but I didn’t experience that. The next day I still felt like me. I worked all day, played with my kids, did laundry – you’d never know I spent half a day in a cancer center, getting “infused”.

My next two infusions are scheduled for 2 and 6 weeks after the first. After that, I’ll go every 8 weeks. It’s a commitment, but it’s worth it. This treatment gives me hope and opportunity. I went 13 years before I experienced any complications; who says I can’t go 13 more? I’ve been blessed with the opportunity to live without fear of getting sick each day, and it’s my hope that since my girls are young, they’ll never remember “sick Mommy” and they’ll never have to experience her again.

The good, the bad, and the fistula

I’ll start with the good. This weekend we finally celebrated Easter. Because I was in the hospital on Easter day, we couldn’t enjoy our normal family traditions: church, food, family, fun. The weather was so beautiful this past weekend that we decided to have an Easter “re-do”. We had an egg hunt for Mackenzie, who quickly found all of the eggs. Once she realized there was a piece of chocolate in each of them, she started unwrapping all of the candy. We’re still rationing that chocolate, so next year I need to take a more diversified approach to filling plastic eggs.

We also gave the girls their Easter baskets filled with toys. Mackenzie enjoys taking care of her baby doll everyday, so she loved her new play diapers and bottles. Lexi was more interested in the basket than the toys, of course. We ended the day with a ham and all the fixings. I’m so thankful that we celebrated Easter as a family, even if it was three weeks late.

Now for the bad, which incidentally is also the fistula: I’m in the hospital again. It’s only been three weeks since my last visit, but here I am, back at Johns Hopkins. And it’s all thanks to the fistula, which by the way, is a word I didn’t even know existed until a month ago. Nevertheless, the fistula from my bowel to my bladder is causing me trouble. It seems that bowel is starting to leak into my bladder, which has created an infection and is causing me pain. I’m having surgery tomorrow to remove the fistula and resect my colon, as well as remove about a foot of inflamed intestine. The surgery will take about three hours. My doctor will attempt to do it laparoscopically, but she might need to open me up if things look worse on the inside than she anticipated. I will be in the hospital recovering for 3-5 days and then I’ll continue my recovery at home for 2-3 weeks.

Of course, I’m anxious about the surgery, but I’m also excited. I feel like I have hope for returning to a normal life. My doctor said I should look at this as a fresh start. She is removing the disease and then I will have a normal GI tract. I haven’t heard the words “normal” and “GI tract” in the same sentence in… well, let’s not reminisce. In addition, the Remicade infusions could prevent future inflammation and complications. My doctor said most patients are surprised by the boost in energy they experience after surgery, and that most of us don’t realize that the fatigue we experience is a symptom of the disease, not a side effect of everyday life.

I almost cried as she told me all of this. When chronic pain has become your normal, it takes away a piece of your spirit. I’m a Christian, so I have faith. I’m an optimist, so I have hope. But my spirit, what distinguishes me from everyone else, has diminished some. I don’t say this out of self-pity or loathing, but in sincerity. When you spend enough time watching your daughter play outside while you sit inside on the couch, it affects you. When your daughter sees you on the couch and without hesitation touches your stomach and says “Mommy tummy hurts”, it affects you. And when your daughter prays for you each day and speaks healing over you, saying, “Mommy all better,  bye-bye doctor”, it nearly crushes you. I’m lucky that my girls are young and won’t remember any of this, but I will. And here’s what I’m choosing to take with me:

I’ve received exceptional health care during my time in the hospital. The nurses are friendly, attentive, and patient, and the doctors are competent and thorough, with a good bedside manner. The staff here truly wants me to succeed.

I have a great support system at home and at work. My family, friends, and coworkers reach out to me on a daily basis, offering prayer, support, and help in any way they can. They make this feel like less of an inconvenience, which helps me to relax.

My older daughter, Mackenzie, is more empathetic than I would expect a 2 1/2 year old to be. She holds my hand and rubs my back when I’m in pain, she hugs me when she can tell I need one, and most importantly, she prays for me. I never imagined a scenario in which I would rely on my daughter instead of the other way around, but I’m glad to see the kind of person she’s becoming, one who cares about people.

Lastly, I’m stronger than I realized. I’ve spent much of my time in the hospital alone, and that’s okay. Matt still has to work, the girls need to go to school, and life goes on. I’ve spent a lot of time reflecting in this blog, which has helped me more than it’s helped others. I look forward to looking back on these posts when I’m healthy, with a humble appreciation of the simple things we all take for granted.

 

 

Back at home

I’ve been home for about a week now and it’s been a strange juxtaposition between old and new. I feel like everything changed for me while I was in the hospital, meanwhile it’s as if nothing changed at home. The girls still need the same things: food, diaper changed, bath, nap. Mackenzie still wants to eat cereal for every meal, Lexi still has a runny nose, and my husband still can’t find his watch. I find comfort in their consistency.

The biggest adjustment for our family is the PICC line. Every night my husband hooks up the TPN, which isn’t a quick process. First, he washes his hands and puts on latex gloves. He takes the TPN bag out of the refrigerator, along with my antibiotic. Using a syringe, he injects an antacid and two different vitamins into the TPN bag, and then massages it to ensure everything mixes. Next he hooks up the tubing between the pump and the TPN bag and “primes” the tubing. The TPN fills the tubing and stops when it gets to the end to ensure there is no excess air. Using an alcohol wipe, he cleans the end of my IV catheter and flushes it with a saline syringe. He cleans the catheter again and attaches the TPN tubing. Once it’s hooked up and ready, the infusion runs for 12 hours. The next morning, when the infusion is complete, my husband disconnects the tubing. He cleans the catheter and flushes it with a saline syringe. He cleans the catheter once more and then flushes it with a heparin syringe. He completes the process by clamping the catheter so nothing enters my PICC line while it’s not being used.

If it sounds like a lot, it’s because it is. And while the preparation for the TPN is inconvenient, so is being attached to it for 12 hours. We spend our evenings keeping a curious 2 1/2 year old and a grabby 8 month old away from the tubing. The TPN bag rests in a backpack that I wear around the house, but the tubing extends from the backpack to my arm. It’s very easy to trip over the tubing or for it to get caught on something. I feel like I’m walking around in a minefield.

However, for all its trouble, the TPN is doing its job. I’m getting the nutrients I need each day and I’ve gained back 5 pounds. In fact, I’ve been feeling so good that I returned to work this week, and my family is quickly returning to our normal routine. I’m back to singing “Old MacDonald”, heating up bottles, and enjoying bedtime snuggles. I wipe noses, kiss boo-boos, and beg Mackenzie to let me brush her hair. My husband and I are working as a team more than ever before since I can’t lift more than 15 pounds because of the PICC line. This experience has tested my family’s strength and resilience, and we’re closer for it.

My next step is to meet with my GI tomorrow. I’m praying for good news!

 

My last day in the hospital

I can’t believe it, but I’m being discharged this afternoon! I can’t wait to see my husband and kids. I can’t wait to sleep in my own bed. I can’t wait to get back to normal life.

I’m going home with my PICC line and a CPN (central parenteral nutrition) bag. A home care nurse will visit our house tonight to show my husband and me how to administer the CPN and antibiotic intravenously. In addition to the CPN, I’m on a clear, liquid diet until I meet with my GI in two weeks. He will do a CT scan to ensure the inflammation has settled, and if it has, he’ll remove the PICC line and I can slowly reintroduce solids into my diet. For now, all I can think about is donuts.

When I reflect on the week I spent in the hospital, I think about what I’ve learned. I’ve learned that I need to stop putting myself last. I walked around in pain for a week before I finally did something about it, and guess what? When I got to the hospital no one handed me a medal for suffering. I have to stop worrying about how my illness might affect the girls’ schedule or our family’s weekend plans. If I’m not healthy, I can’t support my family, so I have to do what is necessary, and sometimes that means taking time out to receive the treatment I need.

I’ve learned that my illness is serious and I have to start treating it that way. I need to stop thinking that I can just take a pill and everything will be okay. This is about more than just medication; this is a lifestyle change. I have to manage my Crohn’s disease on a daily basis and recognize that this affects my entire family.

I’ve learned that my family can function without me, but that doesn’t make me irrelevant. This has been a tough lesson for me to learn. I pride myself in organizing play dates, preparing the girls for Crazy Hair Day, and keeping my family on schedule. However, this past week my husband handled everything. I’m sure Mackenzie’s hair wasn’t done each morning, they ate McDonald’s for dinner, and who knows what else, but they survived. Instead of focusing on how life moved on without me, I need to appreciate that I have a husband who can pick up my slack when I need him to, and I have two kids who are resilient enough to roll with the punches.

I’m thankful that I allowed myself this week to receive treatment, rest and recoup, and I made a promise to myself that next time I won’t wait a week before seeking help. Sometimes I have to come first.

 

Best day ever

Without a doubt, today has been the highlight of my hospital stay, and that’s all thanks to my spunky 2 1/2 year old, Mackenzie. My husband brought her to visit for the day and kept the baby, Lexi, at home.

I can’t say enough how much seeing Mackenzie lifted my spirits. She climbed into my bed and we read all of the Dr. Seuss books she could fit in her bag. We walked through much of the hospital, and everyone stopped to talk to her. I was so proud to show her off. Mackenzie is very independent and insisted on walking next to us, without holding our hands. Instead, she walked with her hands stuffed in her jean pockets, just like her Dad. When we got back to my room, I could tell she needed a nap, so I read to her until she fell asleep. We took a nap together in my bed, and for that hour things felt normal again.

When it was time for her to go, she told me to put on my shoes so we could all go home. I explained to her that I couldn’t go home until I felt better, and she seemed to accept that answer. It’s ironic that sometimes children can accept things that adults struggle with.

After they left and before I had time to mope, my doctors gave me some good news. It looks like the antibiotics are working on the abscess so there’s no need to drain it. And since they’re no longer preparing me for that procedure, they switched me to a clear, liquid diet. Chicken broth, Jello, and apple juice never tasted so good 🙂 Again, best day ever.

 

Surprise hospital visit

To say this past week has been overwhelming is an understatement. I went to the emergency room last Thursday because of lower abdominal pain that was so severe I couldn’t walk upright. I knew that it was related to my Crohn’s disease, and I thought I would be prescribed a steroid and sent home. Instead, I was admitted to the hospital.

After blood work and a CT scan, I discovered that my bowel was severely inflamed and I have an abscess on my right side that has created an infection in my body. I also have a small fistula. (If you don’t know, a fistula is when the ulcers within the intestine turn into tracts and create an abnormal connection between the intestine and another part of the body.) I was given antibiotics for the infection and after three days, I was transferred to Johns Hopkins Hospital.

When I got to Johns Hopkins, a team of doctors discussed treating the abscess with antibiotics, draining it, or surgically removing it. Since it’s not a good idea to perform surgery during active inflammation, they’re currently focused on draining the abscess; I’m waiting to hear when this will happen.

In the past four days I’ve been poked and prodded for more reasons than I can remember. I haven’t been allowed to eat or drink anything since I was admitted to the hospital, and I’m hungry, like VERY hungry. Most importantly, I miss my girls. I miss them most at night. I miss giving them a bath while singing songs and watching them play with toy ducks and seahorses. I miss towel drying their hair and helping them pick out donut-covered pajamas. I miss the smell of Mackenzie’s apple-scented hair detangler. I miss curling up with the girls in bed and reading a good book. And I miss holding hands as a family and praying before bed time. This is when I feel like the disease is taking something from me. This is when I feel like everything around me keeps going while I play catch up.

Thank God for my husband, here with me now, asleep in the uncomfortable chair next to my bed.