Tuesday, September 23, 2014

Scary Eyebrows

Thursday night in the hospital MM was well enough for me to have the conversation about how crazy it was for me to acquiesce to his fierce independence in driving himself to Tampa Wednesday. The docs had already explained the risks to him, of having an MI secondary to the PE, of losing consciousness while driving, of dying, wrecking etc. But only I could explain scary eyebrows to him. "Scary eyebrows"  is how I know his oxygen debt is severe. His facial expression changes. He looks afraid. His face says something different from his words and mostly it is expressed in his eyebrows. I explained to him that when I suggest that he needs to contact his physician, or that I need to drive him somewhere it is not merely generalized anxiety that drives my suggestions. It is scary eyebrows and scary eyebrows are serious. I said what I had to say knowing all the while that I would not be heard. I said it anyway.

Friday morning I stopped at Panera to pick up a spinach, bacon soufflĂ© and cappuccino for MM's birthday breakfast in the hospital. He asked how my night was. I told the truth, which is that I cried for an hour and then slept straight through until morning. 

Thursday, September 18, 2014

Road trip!

As you know Monday was rough what with Melanoma Man's Extreme shortness of breath. Tuesday he faked it a little better, but still couldn't get his pulse Ox above 87. Wednesday, another hard morning to witness, with him refusing my offer to go with him to Tampa. My gut was that he would be in hospital before the end of the week, possibly in Tampa. At three o'clock a text from MM stating, "They put me on oxygen! They are all excited about my pulse Ox. They put me on oxygen," as if to say where do they come up with these ideas? Doctors are sooooo alarmist.  I replied, " I am not surprised." A second text bearing good news," MRI and CT scan show no new tumors, but would you call me?"  

I was on Allergy shot duty at work, so handed over my crown to Tracy, in order to call MM back. He started with the usual disclaimers and then said "I am getting admitted, pulmonary emboli." So in a way MM was right yesterday or whatever day that was when he said he was worried that his lungs were filling up, just not with tumors, but blood clots instead. Pulmonary emboli would be the most obvious option in a differential diagnosis for sudden onset of shortness of breath and oxygen desaturation. Yet it hadn't occurred to me. Perhaps because I am so tired or just can't even think about more complications. Perhaps because of past Emergency Room visits during which one or another ER doc did a  work up for pulmonary emboli, and each time it was not that. Left work early, home to talk to and feed boys, I awaited the arrival of nurse friend Sara G. The boys took the news of the hospitalization and my trip to Tampa pretty well. Butter requested a guarantee of medical success in dealing with the clots. I didn't have one, but I do have a lot of confidence in Moffitt, so I used that angle. 

I stayed at the cancer hotel last night. Today just hanging out in MM's hospital room. There have been walking tests, more of a breathing test than a walking one, an echocardiogram, Doppler of his calves. The respiratory therapist was nice. I just wish she hadn't told the story about her one other Alphal 1 Anti-trypsin deficiency patient. The story about  the  mother with the late diagnosis after she had deteriorated to the point of being on a ventilator. Yes she got a lung transplant, which was a decent ending to the story. MM will not be a candidate for that ever, due to his age and his concurrent cancer diagnosis. It was the part about the woman's three daughters that got me. All three tested positive for the alpha 1 anti-trypsin deficiency. Thanks for that. Melanoma. Man and I just stared at her speechless. I myself say stupid things all the time so I try to let it go. When you or someone you are close to has something rare and horrible people love to share their encounters with your rare horrible disease. They can't help it. They are trying to create a bridge, but sometimes it feels like a cliff they just pushed you off of. Hey people, time to take that bridge back to the drawing board. It's not working for me.

It looks like we will get to go home tomorrow, MM's birthday. I will make the chocolate cake with caramel frosting and toasted pecans, his favorite.

Wednesday, September 17, 2014

Being a Witness

Monday morning it was hard to leave the house. Melanoma Man, Butter, and iMac returned from the Boyscout trip to Richmond Sunday midday. MM was happy, but depleted, a hint of a developing cough. Monday morning gray with a Pulse Ox of 85 on awakening, and still 85 still an hour later. his pulse Ox usually climbs back up to 90 or 91 after he has been upright for a while, but not on this day. Coughing , nausea, and all the strange whistles, creaks and wheezes. I checked to be sure he had a full course of Zithromax at home. I knew he wouldn't start it on my say so. I knew he wouldn't tolerate my staying home to take care of him either. " Send Dr. Cury an email to see if you should start the Zithromax. And Dr. Weber too while you are at it, just in case this is the beginning of a drug reaction like last time." By one o'clock Dr. Cury came through with the answer I wanted, "Start the Zthromax." MM recalled the ambulance ride and hospitalization of last November and didn't want to repeat it. Mid morning an email arrives in my inbox. It is from MM. He is worried that drugs aren't working anymore, that his lungs might be full of tumors again. 

MM let the boys take the bus to and from school. I had already grocery shopped and done a little cooking Sunday. Just a week before I had brought MM to tears by making a menu plan. "You're doing it again. You're taking all my jobs," he said. Well yes I was, but not with the intent of being hurtful. On our previous trip to Publix together, MM, breathless from walking the distance from the parking lot to the grocery carts said "I think I'll sit this one out." He waited for me on the bench at the front of the store while I shopped.

I know when he gets to Moffitt today they will offer him a wheelchair when they see how breathless he is. More than likely he will decline. I offered to accompany him, being careful not to say that I could "take" him to Moffitt. No, he will go it alone. There will be news, good or bad. He will hear it alone.

Sunday, September 14, 2014


I saw this on Pinterest or Facebook this week and thought "hmm, good idea,"
Putting it into practice is quite another task. Melanoma Man turns 65 this week. Don't let fate find out because he wasn't supposed to make it to his 64th birthday. He spent the weekend with 16 Boy Scouts and a few other parents on a train to Richmond where they toured the city, toured Civil War battlefields, reenacted, played laser tag, drove Go Karts, went to the movies and camped out. Phew. I am not sure how he did it, but he sounded delightfully happy by phone and text. He interrupts anxiety with gratitude and busyness all the time.Somehow I seem to think I can get ahead of, be prepared, get everything in order, ready for the storm, but I never quite get there. In addition to turning 65, it is a Moffitt week for Melanoma Man. CT scans, labs, brain MRI and oncologist. If I get extra anxious ahead of time, will that mean good news? Like I have payed my fear and anxiety dues in order to get a good outcome? Part of me believes that. Today I am going to try to prepare differently by replaying happy memories,

While we are on the subject of memories and the Civil War, I share with you a picture of me and Johnny Reb about 38 years ago fighting the fight. I hope you like my outfit. I think the bell bottoms go splendidly with the hat and coat, don't you?