I haven’t written a blog post in a while because it’s honestly been some of the hardest few days of my life. Let me get you caught up.
Last week I had severe stomach pains that caused me to throw up twice. They decided to test my lipase levels as the pain was right between my ribs where the pancreas sits. The level was extremely high so they did an ultrasound and a CT scan and determined that I have pancreatitis.
I already ranted about this but for those of you may not know, pancreatitis sucks! It’s painful and the best way to reduce the inflammation is lots of IV fluids and to give the pancreas a rest. This means no food. For two days all I had were ice chips. Then they let me have clear fluids. I could have water juice popsicles and broth (the broth here is terrible btw).
My lipase levels started coming down and the pain started going a away, but they have been very cautious about advancing my diet beyond clear fluids and some fruit and soup. Over the weekend I felt so weak and defeated. I had nothing in my body. I’ve lost so much weight since being here that I barely recognize myself.
Monday I woke up feeling really good. I had no pain and my lipase had come down significantly. I thought, yes today’s the day, I’ll get to introduce some real food. When they sent me back to broth and clear fluids only I broke down and cried.
I don’t know if any of you have ever gone four or five days without food, but let me tell you, you have zero energy! So stopping myself from crying and hyper-ventilating zapped any potential energy right out of me. I felt broken.
I went to bed that night so upset and angry. I even invented a new word – “hangsty”. Hungry, angry, and angsty. Thankfully yesterday was a new day. I slept extremely well and woke up feeling good (still hungry of course) and was ready for battle. I was able to get some rice for lunch and that overcooked, mushy, flavorless white blob was heaven!
I knew I was getting real home made chicken bone broth later in the day so for dinner I had some squash and diced pears. When the broth arrived, oh my goodness it was heaven! So delicious and flavorful. Huge shout out to my friend Matt for making it for me.
Everything settled nicely in my stomach yesterday so I’m hopeful that today I can keep moving forward. I had some corn flakes for breakfast and I look forward to some broth with toast (I hope) for lunch.
In other news I had measurements for my brain radiation treatment yesterday. They don’t have a start date for the next phase but it will involve radiation to the brain and four lumbar punctures with chemo injected into my central nervous system. This is all done to prevent any leukemia from getting into the CNS. So far the samples of my spinal fluid have all come back clear of leukemia.
Getting measurements yesterday I was super nervous. I knew from Luke’s experience that they would be making a cage molded in the shape of my face to put over my head during treatment to keep my head completely still. I can get claustrophobic so this had me anxious. Turned out not to be too bad though since I had to keep my eyes closed anyway. Now after this phase Luke and I will both have creepy masks of our faces!
As for Luke he is doing much better. His infection has cleared up and he’s slowly catching up on lost sleep. It’s so nice that he can visit too. It always perks me up to see him even for a short period of time.
This has been a long post so I’m going to end it here. Everyone think positive vibes that I’ll get to go home soon! And if you have any non-fat or low-fat meal suggestions please send them my way as I will need to avoid fats for a while so I don’t anger my pancreas again.