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.

May

Tonight MM is at the cancer hotel in Tampa. In the morning he'll get his labs drawn, early. Then an 8:15 appointment with The Weber. He has promised to tell him about the recent respiratory illness with fever and the cough that still won't go away. Also the episodes of leaving the stove top on and leaving the house. Those were three weeks ago and it hasn't happened since. It was a week filled with forgetting. His brain is so mysterious these days. We enter periods of scheduling mishaps, forgetting appointments, forgetting entire conversations. Then we have a clear patch when everything seems to be firing correctly. Then a patch of chills every night and fever, shortness of breath induced by the exertion of putting on socks, coughing all night, oxygen saturation a of 85-87. A few days later no more chills, no fever, oxygen saturation holding at 90. Through it all he is emailing, making phone calls, taking ibuprofen and showing up to volunteer at the library book sale, or to run the Boy Scout meeting. Then home to collapse and have me try to patch him back together. No, he doesn't want to see his internist. He wants to wait to see The Weber.

We attend to the activities of daily life such as groceries, homework, swim team for Butter, Karate for iMac. On Saurday we squeeze in a trip to the UPS store to have a power of attorney notarized giving each of us control over all the accounts just in case the other should die.

This morning I dump the three baskets of clean laundry onto my bed in order to trick myself into putting it away tonight. It worked. There are clean sorted clothes which we all be able to find in the morning.

Tonight

On the way home I stopped to do an errand. Waiting in line I heard the voice of a toddler speaking Russian to her Mama. Instant happiness. I was transported back 10 years to a time in my life when I was the foreigner, listening to the locals speaking Russian and Azeri. Standing in line tonight for those few moments I was with Liana, Farhad, Sabina, Erika, Fiona, Tshai, Jena, Basia, Nancie Jo, Krassi, Natalya. It made me smile. 

The Visitors

They came from Atherton California, Reno, Nevada,  Phoenix Arizona, Birmingham Alabama, Baltimore Maryland, Washington DC, Westfield New Jersey, Reston Virginia, Westbury Connecticut,  Boston Massachussetts, and Portland Oregon. Ostensibly they came to row, an annual rowing reunion of the class of '71, of which Melanoma Man is a member. The one thing I had in common with them was Melanoma Man.

The rowing reunions started in 2002 after Steve's funeral. Many hadn't seen each other in the 31 years between college graduation and Steve's death. So it was decided then and there that they would meet annually. Due to raising children and working I had not attended the rowing reunions previously, but Melanoma Man was quite faithful in his attendance.

This year they came to us in Florida. They tried to come last year, but Melanoma Man discouraged them saying, "you are just choosing Florida BECAUSE OF THE CANCER." Seems a good enough reason to me. This year he acquiesced and it was good. I was intimidated by the idea of it all, by the idea of the wives, by the idea of how my life and specifically my living room might measure up to theirs. Me and my leaky roofed rental house, complete with tarp and sandbags to keep the rain from coming in. Growing up I was the behind the scenes support team for many events hosted by my Mom and Dad. They were great entertainers, so that backdrop loomed in my head as well. Enough is what it all comes down to with me. Am I enough. On my own the answer I usually come up with is No.

MM spent Monday through Thursday shopping and cooking. I tried to catch up on the hopeless task that is housekeeping, without being grumpy, angry or perfectionistic. I got home from work Thursday night, entering our house as I always do through our ping pong, pantry garage, laundry room. The front door has been broken for three years, so the only way in the front of the house is via "le garage." I glanced into our living and saw the IV pole, still up from Melanoma Man's infusion earlier in the day.

In the kitchen nine people plus my three people greeted me. I had met Kathy & Mike, John & CJ, Bruce, Don 13 years ago. Skip, Linda, Karen were new. I chattered nervously, pushing worry away, trying to remaining open and awake to all the people. I had seen a post on Pinterest earlier in the week that said simply, " Let's just be who we really are." Sounds simple, but still hard for this hostess with an IV pole in her living room. Gwen and Ron arrived around 7:30, straight from the airport.

Mike and Kathy had taken charge of renting two beach houses. Mac had cooked Thursday night's dinner. Karen cooked Friday night's dinner. Oz and Vicki had dinner catered Saturday at one of the beach houses. Friday Karl & Terry, Rob & Nancy, Bob and Jay arrived. Saturday Vicki and Oz arrived. 

 On Saturday night Oz presented a toast to me and Melanoma Man with wishes that we'll get to go around the board again and again. Vicki presented us with a corresponding Monopoly themed mug. I knew that they understood how hard this journey has been and will continue to be. They did not avert their eyes but took us just as we imperfectly are. I didn't know most of them at the start of the weekend.  I came to feel like these are my people by the end. That sense of community and love surrounded us. 

Things that Blew Me Away Last week and This

Every weekday morning I get up at 5, turn on the coffee maker, which has been preloaded with coffee grounds and water the night before by Melanoma Man. I spend an hour watching the weather channel, checking Facebook, reading the Skimm. At 5:45 I hit my fast forward button and spend the next hour getting myself, one kid and three lunches ready. The other kid gets ready after I leave for work.

MM had been feeling "under the weather" over the weekend, very short of breath, chills, aching all over, no fever yet, but getting a little cranky. I am friends with many of MM's cousins on FB, since MM won't use FB, it's how we keep up with some of the family and they with us. Cousin Ella had posted Lennon and Maisy singing "That's What's Up." I liked it so much I downloaded it onto my phone and listened to it on my way to work. It came in handy all week long. MM would be cranky with me for helping or he would be cranky about forgetting something or someone. I would sing a line from the song, many of which I now know by heart from the extensive car singing rehearsals I have been conducting. It was a tiring week, which culminated in nothing in particular being wrong. Let's call it a Dabrafenib storm. He has had them before as a result of this miracle drug and he will have them again. The trouble is they look an awful lot like coming down with something dreadful. I don't sleep well on storm weeks. I wake up, and eyes closed listen to his breathing, assessing the sound and whether it just requires monitoring or requires eyes open and action. He reads books, lots of books and plays solitaire on the computer, and does puzzles during the storms. He does not ask for help, or shop or cook. He doesn't want me to shop or cook either because it makes him aware that something is happening and we don't know what yet.  He thinks, maybe tomorrow he'll bounce back, but they usually last 5-10 days, not one. I make helpful suggestions like, " maybe you should give Dr. Array a call?"  I send him helpful emails that recap his symptoms, hoping he'll send them on to one of his health care providers. Honestly I can't tell. Does this the shortness of breath look like a pulmonary embolism, pneumonia, plain ole worsening alpha 1 disease, or is it pneumonitis from the drugs. Since I can't tell, have no lab in my living room, no X-ray or Ct scan or radiologist for that matter. I always wish he would consult the pros earlier than later. It is hard and tiring work being married and being nice, but Lennon and Maisy helped me to be nice. Then yesterday work colleague KW showed me this: Blind Devotion. She said I would need tissues. She was right. Last night I showed it to MM. We sat on the edge of the bed, tissues in hand watching it on my iPad, tears streaming down. Then he said this: Thank you.