Scheduled

MM is on the schedule for radiation. Yay!

Time

Time moves slow while waiting for appointment date and time for brain radiation. It moves fast while brain tumors grow.

Out of the Fog and Into Thanksgiving

I stayed in the fog from last Wednesday until Tuesday or so.I went to work, then there was a weekend, then work again.  Melanoma Man has made two more trips to Tampa since my last post and we will make a third trip together this week. All the preparation has been done, the Novalis 1 mm cut MRI, the head CTscan, the molding of the skin tight mask he will wear during stereotactic radiation surgery. He has a new radiation oncologist, which is disappointing because we had bonded with his first radiation oncologist so well. Alas Dr. Rau moved on to another group practice in Orlando. I feel like he was a good luck charm in some way. You get attached to the teeny tiny known aspects of treatment, like the doctor you have seen before, the same barista at the Moffitt Starbucks or the valet parker. The repetition reminds you that you have been here before, done this thing, can do it again, came through to the other side. Sometimes the little changes can immobilize me, suddenly standing there wondering, "what do I do next? what is the next right thing?" I will misplace a small household item and become possessed to find it, as if my existence depends on locating it.

Things are happening, surprising things. Coffee with a newish friend for two hours on a Saturday. It renewed my strength and belief in myself.

 A last minute invitation for Thanksgiving dinner from just about the only person MM would accept it from without feeling pitied. We spent a wonderful Thanksgiving Day at someone else's house. Usually MM cooks for us for Thanksgiving, but with all the trips to Tampa there was little time to shop or prepare. I worked all day Wednesday. MM got home late Wednesday night from Tampa. No worries, we had no preparation to do for Thanksgiving.

Moments after I got MM's brain tumor email my phone dinged, a new text. I checked my phone. It was AM, not one of my regular text correspondents, but a physician I worked with for 7 years, checking in to see how things are going. I am not much for faking, "oh fine, lovely weather" and what have you. Although I can do it, having essentially been raised by professional cocktail party throwers and goers. What I heard next from AM surprised me. Her father is dying. She is on the way to see him one last time. She told me how much respect she has for me and the way I manage my life. AM is extraordinarily bright, accomplished and dare I say a bit fierce at times. I admire her sense of purpose, drive and directness toward her goals. I, on the other hand, have not lived my life with that kind of determination, clarity or planning. I have continually adapted to the people in it, rather than ask them to adapt to me. I have missed opportunities and sold myself short and just gotten by sometimes. In spite of all that I think I may have succeeded in communicating to people that I love them. 

Where to begin?

Some days I wake up not knowing where to begin. On these days I am thankful for laundry, ironing, making lunches, needing to grocery shop, and going to work. The tasks of daily life get me up and out of bed, putting one foot in front of the other over and over again.

I stayed home on Wednesday with Butter who had sore throat and fever. I tried to keep myself busy, waiting for a text or a call from Melanoma Man. Then I tried to take a nap around 1 pm, knowing that he would see Dr. Etame at 1:15 pm. I aborted my unsuccessful attempt to nap at 1:30. An email came around 2:30. His phone battery was out of juice. "Two new brain lesions, coming back to Tampa Saturday and next Wednesday. Still waiting to see oncologist and get CT scan results."

The next few days I muddled through. Each morning waking up and thinking something bad has happened, wondering for 30 seconds what that bad thing was. Brain Tumors, that's right, I say to myself in my head.

MM got home around 9 pm Wednesday and asked , "Did you tell the boys?" No, I hadn't wanted to give them partial information with no indication of the plan. MM reports no interval growth in the tumors below the neck. He hands me the brain MRI report and I see that there are 3, not 2  new brain tumors. He draws me a picture of a line with an arrow and  box on it. He said "the box is the gray zone. We are in the gray zone because I've been on these medications for 24 weeks. The meds might still be working." In my mind there is no gray zone about brain tumors and there is no doubt that the drugs have stopped working in the brain, but I do not share my thoughts on this.

Thursday morning 5:15, drinking coffee in our living room. MM realizes he would not be able to go to the Outdoor Leadership Boyscout training weekend. He pickes up his phone and dials fellow Scout Dad, Charles. I am thinking 5:15, really? Charles is the Command Master Chief at our local Navy base. MM reasons that he is sure Charles is up. He explains that he won't be able to go, but he is still grocery shopping for the camp out and will drop the food off at Charle's house later Thursday evening. I hear these words come out of MM's mouth," It's not clear how serious this all is."  Charles is also a medic and is certainly not fooled by MM's non-chalance.  

Saturday I had a day to myself with MM back in Tampa and the boys camping with scouts.. I walked on the beach at 7, met a friend at Panera for breakfast, got my haircut at 11, coffee with another friend at 1:30.

Sunday Charles calls and invites us for Thanksgiving. At first MM is inclined to say no, but then says yes, we do accept the invitation.  I am relieved. I am working all day Wednesday and MM will be in Tampa again Wednesday meeting his new radiation oncologist.

Public Speaking- part 2

The night after my failed rehearsal for Melanoma Man I decided to try a different audience. While MM transported imac to Karate, I practiced my presentation in my living room for Butter. I received a favorable review from this twelve year old boy, although somewhat biased in my favor. "Mom, I liked it. I liked it because you have logos, ethos and pathos." I looked at him quizzically. He restated it, "Logic, ethics, and passion. That's from Aristotle Mom. I like him because he's from way back when, but his ideas are still accessible today." This is my kid?

Last night imac saw me doing dishes and heard me say I needed to do a load of laundry next. "I can start the laundry for you Mom." This is my kid too? It's extravagant really having these two. They are stepping up.

Back to the conference. I think it went well. Lots of questions at the end, a few nice remarks from colleagues. I'll find out more on Friday at our debriefing meeting. The big boss will give us our numbers from the written evaluations.

Tonight is another night before Moffitt. Melanoma Man left this afternoon, arriving at Moffitt around 4:30, in time to drink his oral contrast and receive his IV contrast for his 5:30 CT scans. In the morning he'll have labs and an MRI of his brain. Afternoon will be appointment with the neurosurgeon, who reviews his brain MRI, and then oncologist to review CT scans and labs.

This afternoon Butter texted me at work to tell me that he was home from school and has been freezing cold since third period today. He also mentioned flannel pajamas, a hoodie and four blankets were keeping him warm. Uh-oh. I left work early, 4:20, thanks to gracious co-workers. Sure enough Butter's temp was 101.

Originally I planned to work a half day tomorrow, but texted my boss to say I will be staying home with Butter. Thinking about morning I realize the adjusted plan means I don't need to get up at 5! Oh the luxury. I will sleep in until 6!

Tomorrow evening I have my second appointment with an acupuncturist. I've done this before, about 22 years ago so it doesn't give me heebie jeebies, as it might to others. It just purely makes me feel good, and sometimes feeling good can be hard to come by.

Public Speaking

I'm not a fan of being the speaker. So this Saturday I am speaking at a conference. I did not particularly volunteer for this speaking engagement. In fact I was originally scheduled to be in Atlanta this weekend in the audience listening to other speakers, who are in fact, not me. Melanoma Man's Pulmonary Embolism debacle and another recent health issue that lasted 10 days persuaded me to cancel my registration to attend the Atlanta conference. Four days out of town leaving imac, Butter and Melanoma Man to there own devices just doesn't seem prudent. Word got out around the clinic, that I wasn't going to Atlanta. Soon thereafter I received an email from an influential Nurse Practitioner/co-worker within my institution who is orchestrating a local conference for nurses. The email thanked me and all the other speakers for volunteering to speak at said conference.  The email was also sent to the Director of Nursing and the Nurse Manager of my division. A few minutes later I received an email from the Orchestrator with slides for my presentation. A rock and a hard place. That's where I am. Also aggravated.

I reviewed the slides. I didn't like them. I did a little research in between patients. I discussed and reviewed my slides with my physician and nurse colleagues. Tonight I asked Melanoma Man if I could practice, if he would be my audience. I was 60 seconds into my presentation, when Melanoma Man said "Is that on your slides, what you just said?"

"Yes," I replied.

"You know they can read. Your audience, they can read." This seemed like a good stopping point to me.

That's great, perfect in fact. Then there is no need for me to speak at all, just put my slides up and let 'em read.

What in God's name was I thinking when I asked MM to be my audience? Don't answer that, but do wish me luck on Saturday.

After the storm

Friday September 19th, we arrived home from Moffitt Cancer Center around 4 to our two sweet boys and Cha Cha. Medi home met me at the house with an oxygen compressor and some "to go" tanks. I took one look at the "to go" tanks and thought those will be the "hidden in the closet" tanks. They are not of the cute small backpack canister style. They are gigantic. The compressor is smaller than our last and a little less noisy. I wonder how long before MM calls Medi Home to return them.  Butter wants to discuss first things first. "It's about Dad's birthday cake. I know you're probably tired and might not feel like making the cake today." No, I assure him today is the day. I am making the cake. It is a birthday to celebrate!

Saturday I gave MM his daily Fragmin injection around 7. I joke with him that nothing says good morning like a good cup of coffee and a shot in the stomach. After lunch I administered the Zemaira infusion, which ordinarily would have been done by Kathleen on Friday morning, but we were still in Tampa. Saturday MM took the boys to the library and to get a movie from Redbox. Sunday he is at church at 9 a.m as usual. Monday night he leads the Boyscout meeting. He says he feels like a demolition derby car, windshield shattered, a tail light out, rear bumper damaged, but still in the race.

I felt like a cat with a sand spur in my paw all morning, trying to get comfortable, then ignoring my mood, then trying to attack my mood more aggressively, gnawing at my paw to try to get it out, whatever it was. I tried making cards, doing laundry, cleaning, taking a shower. Nothing worked. The tears came as easily as if I were a post-partum Mom. I don't like the tears because they give me a headache, and make my face puffy.  I develop the dreaded faceache, close relative of the headache. Sometimes the tears just go on and on and on well beyond their allotted time. Not today, as quickly as they came, they left. I was thankful the storm had passed.

The storms keep coming for me, day after day. Sometimes I am disproportionately angry with my grocery cashier who implies that the teriyaki beef jerky is NOT on sale, when it most certainly is ON SALE. Otherwise why would I have purchased this many packages of Teriyaki beef jerky, I ask you? It seems like a bigger outrage than it is. A song or a rainstorm will have me in tears in a second. There is that strong desire to tell whiny people what I actually think of their whining. Each morning I wake up, wow, another day, wishing I could go back to bed, grateful I have a job that gets me out of bed. The job, and the daily routine, getting up @ 5, reading, making lunches, shower, getting Butter out of bed, leaving a note for imac, driving to work, working. Laundry, lest we forget laundry. All of that is my tightrope. On one side of the tightrope, despair, on the other anger. Sometimes I fall off into despair. I overcompensate trying to get back on the rope landing on the other side. I think of Cirque du Soleil, which I have had the good fortune to see twice in Orlando. On either end of the tightrope, a tiny platform for rest. So I give myself permission to get in bed @ 8, to do yoga for twenty minutes instead of cleaning the bathroom, to sit and read or recite the rosary. It's my time on the platform.

P.S. Melanoma Man is using his oxygen all night long, almost every night, and feeling much better.