For Better or Worse, In Sickness and in Health

A late posting from October 2, 2015-These are the promises we make. Intellectually they are easy promises to make. We usually think they are hard promises at the time the vows are spoken. We are self congratulatory and so committed amidst flowers, music, friends and cake. Living them imperfectly, trying again when I fall short, no longer theoretical. Words cannot capture the attachment made to the spouse who both infuriates and delights you through the years. The pain felt as I watch him head straight into the storm of illness and treatments and mortality with book in hand. He always has a book or two with him in which he can duck away for a moment of peace.

A week ago today  I was leaving the ICU, taking the C elevator down to the lobby and then to the gold valet and back to the hotel. MM is feeling good, quiet, a little more tentative.

We made our return trip to Tampa last Wednesday, left home at 6 a.m., returned home at 8 p.m. Trusty Rose, MK, Kathy, and Sara wove together the daily routine for iMac and Butter. It was a peaceful trip for us. We were not afraid. We expected no new revelations today. Waiting in the Oncology exam room MM asked, "Why do you think Dr. E wouldn't comment on the other four tumors?" I had wondered when Melanoma Man would notice. I said "I think they pose no immediate danger to you. It is too soon to address them. I think he needs to see if they have stablized in size on the next MRI or if they will grow."

At home this weekend there is that desire to forget the brain tumors and to return to a time before tumors. I find I am a little more capable of achieving peace during the in between times. This is good, because there is no way my mind, spirit or body could sustain the level of fear, tension, anger and sadness that mix together and periodically fill my mind. I wonder if it is the meditation, your prayers, the yoga. It does not matter. I am grateful. 

Part 1 done

Surgery done, surgeon happy. MM is being extubated now. I have the familiar feeling of exhaustion, the kind you get being awake more than 20 hours during international travel with a asthmatic toddler on your shoulder. I'll go back to recovery in a few minutes to see Melanoma Man. After a bit he will head up to the Neuro ICU.

Trampolines in the waiting room

Last Saturday I had the chance to jump on a mini trampoline. Now I think I'm in love and I must have one. Right now, in fact, in this MRI waiting room. A mini trampoline would be just the thing to while away the time. This is the fourth waiting room of the day. Maybe each one should have a different activity, coloring books in one, crochet in another? MM's spirits remain high, though I saw some glints of alarm when he heard mention of the neuro intensive care unit. Then again when he realized he had understated the usual hospital stay by 24 hours. I made three days of arrangements for kids. A few quick texts and friends have stepped in to cover day 4. Then again some concern when the nurse said this: No Driving for two weeks and then only if cleared by Neurosurgeon. Looks like I need to do a little more planning and arranging. MRI done tonight at 6:45 pm, then on to Chipotle for dinner. It was my first time at Chipotle and it was a good choice, not fast food, not restaurant food, but real food. Next stop was CVS. Snickers for Melanoma Man, York peppermint pattie for me. I was feeling nostalgic for the 70's and the "get the sensation" television ads. I am also highly suggestible and there they were at the checkout beckoning. 

Call from home-raining cats and dogs, looks like the "new" drainage system put in last week by the land lady won't handle the rain. It's up to the sandbags. I like to keep some sandbags on the patio, you know, just in case. Unfortunately the drainage guy unhooked our fabulous duck taped Jeri rigged pump when he was digging his fancy dysfunctional trench. Now iMac and butter are trying to reinstate our pump system to it's former glory in the dark, in the rain. I suppose this is some kind of learning opportunity? Perhaps the lesson for me is don't forget to hook up the pump before you leave home. Or maybe the lesson is who cares about a flooded kitchen, dining room, and two bedrooms, or perhaps the lesson is " whew, glad we are renting."

Circling the airport

That's what we do to bide our time as we await LITT(laser interstitial thermal therapy). I may have used this analogy before, but forgive me because I can never go back to read what I have written in the past. Beverly called a week after the initial diagnosis having gotten the stars and planets aligned, which is no small feat. I thought we had agreed that we would take the first available time slot. I was at work when Beverly called. She offered him the 10th and then the 14th. He  said no to both because he will be too busy with the libray booksale.

On  the phone after 5 pm he told me that he had refused the first two dates and had accepted the 24th. I said "No, just NO. This is about priorities. You call Beverly back and ask for the first date." My after thought was that perhaps he is tired and really just wants to stop treatment. And then, why did I even say that? He cannot hear me. I had calmed down significantly by the time I got home. I asked MM of maybe he was ready to stop. He looked alarmed and said No, emphatically no.

The next day he was assigned a new surgery date, September 24. Two days later, another call from Beverly. The radiologist isn't available on the 24th. At this point no surgery date. This week he forgot Butter's math tutoring and imac's flute lesson. Butter & iMac reminded him. He left the stove on twice. Beverly called two days ago and confirmed surgery for the 24th. Yesterday he told me he's having nausea and sometimes his right foot drags. I noticed his handwriting change last week. This morning he asked me how many brain tumors he has had in total. Eleven total, 5 right now. On the way to church I decide I am going to be cheerful. I will play tricks on myself. I'll put on makeup and church clothes and act as if. Home from church I slip into a cleaning frenzy without realizing it. In so doing, as is often the case, I seem to have created a bit of chlorine gas. There was a touch of bleach in the rinse water for dishes. Then I wiped out the sink with a Seventh generation disinfecting wipe, immediately recognized that familiar smell and feeling. Opened all the doors, turned on the fan, ran the water in the sink, took the kids outside. MM said he didn't smell it, so he wasn't getting up form the living room sofa. It was primarily over the kitchen sink, so I didn't fret about MM. Mostly I was disgusted with myself. I couldn't fool me anymore with fake cheerfulness, how would I fool them into not seeing the  fear.

It's gettin' It's gettin' It's gettin kinda hectic

Summer was great, but too short. imac went to Philmont Scout ranch and backpacked 72 miles. Butter went on his first mission trip with church. I took two weeks off to hang with the family. It was back to school on August tenth.Ridiculous because last time I checked August 10 was part of summer. The kids are settling in to tenth and seventh grades, band practice and swim practice, homework and school supplies. I've attended two high school football games already in order to watch the halftime show of course. iMac plays flute in the marching band. I rely heavily on friend MK to cue me when to clap or ooh and ah about the football. I understood football once, when I was in 7th grade at the now defunct Byrnes School. My class was all girls even though the school was co-ed. We were the smart class, although I didn't realize it at the time. The football was fun that year because there were no stellar athletes in that little class of girls and it was just plain fun. Since then I've forgotten all the rules.

August 8th Melanoma Man drove the boys home from a week away. I flew home, as the original plan had them arriving back on a different day. We went to church the morning of August 9th. Before church MM wasn't feeling well. He asked me questions about pulmonary emboli, thought he might call the on call physician. Outwardly his color was good, his oxygen saturation good, respiratory rate normal.  Just before the sermon at church he got up and walked out of church. The boys and I followed a few moments later. I drove the boys home and not finding Melanoma Man there, I called him on his cell phone. He was at the emergency room, already triaged and in the back. He looked good when I arrived, just said he felt "woozy, odd." He was discharged a few hours later, no pulmonary embolism.

August 25th he left for Moffitt. He faced a full day of labs, CT scans, MRI, Neurosurgeon and Oncologist visits starting early on the 26th. His appointment with Neurosurgery to review his MRI was at 2:45. At 3:30 he sent a text that said: "Keep Calm."

He called from the car around 5. "One tumor growing in his brain. It's one millimeter." he said. I shouldn't have said it, but I did, " One centimeter, not millimeter." At this point I know to wait to see the report because Melanoma Man's verbal report and the radiologists actual report rarely coincide. Options given: Do nothing, craniotomy and surgical removal of the whole tumor, small incision into the skull and laser surgery. He opted for the laser. Friday morning he showed me the report, which included four other brain tumors also growing, but not quite so fast. Now the waiting and for me the knowing that the drugs cannot permeate his blood/brain barrier anymore. The magic of the previous stereotactic brain radiation on the blood/brain barrier has worn off, as we knew it would. 

The headaches have started. Christmas carols too. He can't get Christmas carols out of his head. And we wait each day to find out what the surgery date will be. We know he'll have to travel to Moffitt again this week for another MRI and probably to get fitted for a frame or a mask that he will wear during surgery.  We know that surgery will likely be next week, but not which day. We had a good weekend. Sometimes it's nice to have these few days  just suspended in  time, before the plan is put in place and sometimes it's maddening. We continue to put things on the calendar as if we are not going to Tampa for brain surgery. Tonight as I write he is at the BoyScout meeting. Today he worked on plans for the library booksale. Today for me there was work which wasn't quite busy enough to distract me. 

So there it is. They're back.

The Fight

Fighting the Fight

I've been unwell lately, body, mind, and spirit. I suppose that's why i haven't written.  The body, nothing too serious: gained weight, allergies out of control for the umpteenth time, cheek/ear/head pain that wake me almost every night around 2 or 3, a messy/disorganized/ disconnected house and a messy disorganized disconnected mind. I started meditating 30 days agoto try to reconnect. I think it may be working. I went to see my first Florida allergist, although I've lived here for almost 9 years. I've left a trail of allergists behind me in Maryland and DC and hoped to have left the allergies with them. As allergic people do, true to form, I have now succeeded in developing allergies to all the flora and fauna here. I had the sinus CTscan, the one I've been avoiding since my second sinus surgery in '92, having promised myself not to go under the knife for this particular ailment again. Next week we'll piece all the testing together and come up with a plan that I hope will look like: allergy shots, check for improvement, experience improvement, have no need for anyone's surgical skills. Since January the depression has been bearing down on me and I have tried to hold it at bay, but only succeeded in becoming more detached than usual. Crying started up again, which is a good sign. It is the light at the end of the tunnel, the feeling of something, anything at all, means the possibility of feeling good in the near future.

Work has been boring beyond boring because I've learned all they really want me to know and seen the boundaries of what they don't want me to know.  As I work in an pediatric allergy department I am viewed by some parents and children as a CIA operative in charge of torture. Try as we may to get the word out to parents and pediatricians alike, the questions are: child development. Where is the child in the continuum? Based on that placement, will the child be able to tolerate allergy testing? For most 3-7 year old the answer is absolutely not. Is there a real likelihood based on medical history that this child's allergy could be life threatening? Will the result alter or guide our treatment recommendations? In spite of these logical questions most parents decide to proceed with the testing even if we recommend waiting until the child is a little bit older. Then begins what sounds to an outsider like a torture session, rather than a procedure that rarely even draw blood.  Lots of screaming children, glowering or simpering parents, burned out Medical Assistants and Nurses.

Most of my allergy shot patients, to the contrary, accept their plight without a fight. I enjoy getting to see them weekly, hear about what they are doing in school, their hobbies, families and dreams.

This week one of my teenage allergy shot patients came in after an 8 week hiatus. We made adjustments accordingly to his dose and schedule, so as not to induce anaphylaxis after such a long time between shots. I advised him that he would need to come every week for the next 4 weeks to get back on track and could then return to once a month. At the end of the visit, Dad came in, 6'5" full confrontation mode. He advised me that it was impossible that he could be overdue, he had scheduled all the appointments. We reviewed the electronic chart, at which point father saw that indeed the last visit was May 4th? He said on his way out: "You couldn't have called me!" At that moment, I congratulated myself for not answering him. It wouldn't have been productive. I reviewed the chart again and saw that 4 appointments had been cancelled by the family, by a parent. I thought, what am I doing here? This is meaningless work. I remembered, oh yes for the $, the health insurance, the great co-workers.

I understand, that like me and 50% of the people you meet in life, this father is fighting a terrible battle. I don't know what his battle is, but I know that without it he wouldn't have confronted me as the cause of the communication and follow through short comings within his own family. If he returns this week I am going to ask him to remember and know that although his battle is hard, so too are the battles of those he meets. Save a nurse, be kind. That's all.

Two steps forward

Melanoma Man's visit with the Weber went well. He has made the leap from every 4 week follow up appointments to every 8 week follow up appointments. We will celebrate our 17th wedding anniversary on Saturday. We will do so by staying home and trying not to leave our neighborhood which is currently filled with golfers, and their fans. I have already grocery shopped and checked with kids regarding any school projects or supplies so I can have everything laid in before the golf storm. It actually started already.