The Big H – I chose this title because last night it seemed that everything I wanted to write about began with an H. I thought of the title “Eighches” – you have to say that aloud for it to make sense…

The Big H is a hamburger that we enjoy once in awhile when we are in Salt Lake City.

Hires is the hamburger joint where you can get a Big H (mine always has avocado).

Hunger – This plagued me all day yesterday. I have begun to notice days of stress eating – if I don’t have a good lunch on the days that get crazy I begin to eat everything in sight.. the problem is that when our days get particularly crazy there isn’t a lot of food in front of me.

Air Hunger – Now I am getting to the point because air hunger is what Mark has been experiencing this week. Recall that after having over a liter of fluid removed from his lung on Monday, Mark felt good and I said that my friend was back. Well, that lasted about six hours. He did sleep well that night but was not breathing well. When I took him for chemotherapy on Tuesday he needed a wheelchair to get in and out of the hospital. (Sidenote – chemo took about 3-4 hours, so much better than four days! We are scheduled to return next week for a double dose but it should only take about five hours.)

Back to air Hunger, Mark returned to the ER on Wednesday. I was not home but Greg was able to take him. On Monday the Xray showed no fluid but the doctor ordered a CT as well. Wednesday they saw no fluid on the Xray and just sent him home with some cough medicine (which did help with the coughing but not the breathing.). If I had been there I would have insisted that they look again! I told Mark that if he continues to worsen we would head up to Salt Lake City, it is worth the drive to have doctors that are specialized.

On Thursday morning I had a couple errands and came home utterly exhausted. I had to lay on the couch in a sort of zombie state. My body is not as tired as my mind. I was drifting in some sort on non-reality when Mark said, “Corinne – we have to go NOW!” I sat up and cleared my mind and packed him into our car. The Huntsman does not have an ER, but it does have an acute care clinic. We contacted our sarcoma team who let them know we were just over an hour away.

Ham Sandwich – A little break in my air hunger narrative to mention a ham sandwich because it was a bright spot in my day. As the PA was leaving our room she asked, as they all do, “Is there anything I can get for either of you?”

Remember that I was sooo hungry – so I told jokingly her I could use a hamburger. She told me she could get me a ham sandwich! Really?! Usually they bring us Lorna Doone cookies. I was so excited!

They brought the Xray machine right into our room immediately followed by the thoracic team. These two doctors carried satchels with ultrasound machines that used a smartphone as a screen. So COOL!! They saw a very large pleural effusion (fluid on lungs) and moved us to another room to get it drained. Protocol only allows them remove 1500 mls which they easily took out. They think they left another 200-500 mls behind. (By the way, their Xray didn’t show fluid either – so we have learned to ask for an ultrasound.)

Nevertheless, this brought immediate relief to Mark and they moved us back to our original room. A bit later someone realized that they hadn’t brought the sandwich which brought immediate relief to me. With Mark feeling better I was able to share half with him… except it turned out to be turkey/swiss which was just fine (but it doesn’t start with H).

Home – this is where we thought we were now headed (with a stop at Hires for a Big H) when the PA returned. They had taken labs after the fact and were just getting results… it turns out that one of the cardiac enzymes was elevated. Combined with the pressure Mark has been feeling in his chest… well, red flags were showing up and we were moved to a cardiac watch room. People were scurrying about – before getting hooked up to all the lines Mark asked if he could use the bathroom. This is pretty standard procedure but they wouldn’t wait – they really wanted to see that EKG and get more labs sent… side note – it was more than an hour before he was able to use the bathroom!

Heart – the EKG showed no problems and we met a very nice cardiologist who spent time with an ultrasound machine – he tried the portable option that looked like they keep at the desk for just in case (not as nice as thoracic doctors’). He came back with the big machine and spent time talking to us and showing us what he was seeing. (Haha, as though we could read ultrasound images – I always find myself hoping to see the fingers and toes of a new baby.) They were expecting to see inflammation around the heart – that immunotherapy from last fall tends to cause latent inflammation. I am thinking this is what happened to help us notice the tumors in the brain since the symptoms went away with steroids.

Anyway, there was little to no fluid, but he saw some in the vessels of the neck (and why can I not think of what to call them??).

Hospital – another H word and this is where Mark is now. The cardiologist wanted him to stay the night for monitoring and for a more detailed echocardiogram in the morning.

Hamburger – not a Big H, but when I heard that Mark was staying overnight I rushed upstairs for a tasty bacon cheeseburger before the Bistro closed for the night. I was soooo hungry again – my kids will be shocked to hear that I even ordered French fries. I never do that.

Home – I decided that I should drive home and come back for Mark in the morning… or afternoon because we know how long it takes to be discharged. It is so good to sleep in one’s own bed and I knew Mark would have one the best nights he has had in weeks.

However… Mark called me as I was eating breakfast so that I could head out the door to meet him. Everything is up in the air and they won’t be letting him come home for a few more days while they work through what needs to be done.

Here are a few details:

Mark’s heart is working well, but it has too work too hard. His resting heart rate has been in the 110’s for quite awhile. Recall there is a tumor pressing in on it. What to do about that? Radiation? Surgery? Chemotherapy? There are a lot of questions for him to answer about his new chemo treatment but there are no answers. He had his first dose on Tuesday… nothing to tell! For now the plan is for me to wait for another phone call – the doctors all need to have a council. Of course it is a Friday. They expect to keep him for a few days.

Hunstman Cancer Institute – we love this place! We are so grateful for everyone there.

We feel a bit like one step forward, two steps back… maybe three steps back. I think it is a bit more like quicksand – did you used to play quicksand when you were a kid? I really used to think that quicksand was something that would happen to me when I grew up, just like hot lava. When we played quicksand it meant pretending to sink while a sibling sat on the couch and held tightly to your hand or arm. I appreciate that my siblings are still nearby reaching out to help – all of you are. Your words give me strength and your prayers are our lifeline!

Earlier in the week a friend asked how she could help. I asked her to pray and send us a few angels – the invisible kind. Now I am typing at my desk and looking at my painting of angels coming to the rescue. I cannot see them, but they must be here with me. How else could I continue to feel so good and so peaceful and so full of Hope and courage (and Hunger – I guess it is good to have an appetite)? I have such gratitude for them and for all of you who pray for us! Much love and thanks!!