Friday, December 4, 2015

Coup in the Kitchen

The coup began last Sunday afternoon. Melanoma Man saw me looking through my notebook.He asked if I was menu planning for the week. I was, as I have been for the last 7 weeks or so. We have a zillion cookbooks, but the things I really cook are in the notebook. MM uses cookbooks when he cooks. He's all Jacques Pepin and Julia Child. Hard to believe he was the king of carry out and didn't know how to cook just a year or two before we met. 

MM got out his menu planning paper and sat down with me to plan. I took an inventory of our raw ingredients and then just let him run with it. Monday when I got home there was dinner, and Tuesday too, leftovers on Wednesday, and Thursday. He grocery shopped, little mini trips, rather than one big trip. I think he was trying to show me that I could go to Leslie's funeral, that he could man the fort. 

I coached the boys on how to be helpful in my absence. Butter is usually a decent helper unless he is starving or experiencing the delightful mood swings of adolescence, which occur at least twice daily. iMac protests a bit about doing dishes, but I know he is bluffing. MM had had his best week yet since brain surgery, so while some days I have felt worried just leaving to go to work, this week has been almost worry free. 

Monday, November 23, 2015

Can't sleep

I can't sleep. My friend Leslie always recommended keeping a pad of paper and a pen on your bedside table to jot down the thoughts that kept you wake. It is Leslie who wakes me . We attended ninth through twelfth grade as two members of the tiny class of '84. I think there were thirty two of us in all. We attended the same college freshman year and were roommates. I left after the first semester. I was a bridesmaid in her wedding. I was a visitor in the hospital after her third open heart surgery. She was simply resilient. By 23 she had already lost her Mom to a massive heart attack. By 28 she had divorced her first husband, which was a relief to us all. She also underwent her third open heart surgery at 28. I think the surgeon was Dr. Weintraub, but maybe he was her cardiologist, not her cardiac surgeon? I do remember going with her to see Dr. Weintraub. Leslie was born with a not quite right heart. She had her first open heart surgery at age 5, at Mayo in Rochester. Surgery # 2 & 3 at Georgetown at ages 14 and 28. Two weeks ago she posted that she had been having symptoms since summer that caused her concern. She saw her cardiologist once, then twice. After the second visit he referred her to a cardiac surgeon at Hopkins. She was scheduled for a valve replacement at Hopkins on December 18th. But alas she didn't make it. I couldn't really tell from her post two weeks ago how dire the situation was, figuring she's a pro at this. I remember visiting her at Georgetown in the cardiac care unit after surgery #3, visitation was limited. I was waiting for my turn and out walked Wayne, class of '83. I remember Leslie telling me that Wayne had come to see her daily at the hospital when she underwent her second surgery at age 14. I saw Wayne come out of that unit and I thought it's a done deal. Those two are getting married. It was my turn to visit now. She was a little loopy post op and as white as Snow White. Even though I am a nurse I still have the hardest time seeing "my" people in a hospital bed. As I was leaving her room I kissed her on the forehead. She replied "thanks mom." That's who she needed at that moment in time. I was glad to play the part. 

She did marry Wayne. They adopted two children. We kept up on Facebook mostly, catching up on what the kiddos were up to. Her son, K, attended Philmont Scout Ranch in New Mexico this past summer one week before my son. Later in the summer she messaged me that K was working as a camp counselor at my friend Niki's family owned camp. Niki and I have known each other since age 3 and 5. Small world.

Just two weeks ago Leslie posted on Facebook that she was in right sided heart failure and had scheduled her fourth open heart surgery for another valve replacement on December 18. I sent her a card with a prayer card and a poem. I had no doubt that her resilience would bring her through this. Yesterday I learned that  she is the first of our class of '84 to depart this earth. 

Monday, November 16, 2015

Laundry Thief Steals Dinner

Since the brain surgery, I have encroached upon another of Melanoma Man's household responsibilities, which is shopping for and cooking dinner. MM has always enjoyed cooking and has had every intention of making dinner, but more often than not it seems to be too much for him. I accidentally, on purpose stop by the grocery store on my way home, just in case. He accepts this with a grace I haven't seen before. I pre-wash the dishes and let him know I will do dishes if he isn't up to it. About half the time he is up for doing dishes. 

The episodes of achiness, malaise, cough, fever and chills have visited more frequently and stayed longer. They respond nicely to the five day steroid tapers and then a few days later the symptoms are back. MM's pullmonologist put it in perspective this week when he said over the phone: "Hey I am just thrilled to be talking to you on the phone. My other patient's with lung disease as severe as yours are either dead, or can't get out of bed." MM was a little shocked by this, but I wasn't. My nurse friend Sara says "sheer will, that's what he's made of." 

We made the trip to Tampa and back this week. I took two days off from work so I could go with him. He feigned protest, but it wasn't convincing. We arrived Tuesday at 3:30, spent a couple of hours getting labs, CTscans, brain MRI. Dinner, hotel, bed. I kept trying to let go of outcomes but it didn't work. The tension headache woke me at 3, vomiting followed at 5. I felt better by 7. We left the hotel at  8:30. We saw Dr. E the neurosurgeon first. He was serious, but not dire. He printed pictures of MM's brain for us, showing us the shrinkage and good response of the parietal tumor. He showed us the frontal lobe tumor which has grown 1 mm, not too much, still watch and wait. He scheduled MM for repeat MRI and office visit in 3 months. MM said "You are going to be here in 3 months, right? Dr. E replied," I'm taking it one day at a time." I took that to mean he's being courted by other institutions. We just get so attached, even if they don't. It was hard to lose Dr. Rau and Dr. Weber to the next phases of their careers, so my fingers are crossed that Dr. E will stick it out.

Saturday, September 26, 2015

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. 

Thursday, September 24, 2015

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.

Wednesday, September 23, 2015

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."

Sunday, September 6, 2015

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.

Thursday, August 27, 2015

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.

Friday, July 10, 2015

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.

Thursday, May 7, 2015

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.

Tuesday, May 5, 2015


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.

Tuesday, April 14, 2015


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. 

Tuesday, April 7, 2015

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. 

Thursday, March 12, 2015

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.

Friday, February 27, 2015

The long and the short of it

The elation of no NEW brain Tumors wore off pretty quickly this time. Dr. Etame noted that the left temporal lobe tumor is still present, appears stable in size. He went through the images one by one with Melanoma Man on Wednesday, with a caution that the official reading by the radiologist is still pending. Separately today MM and I checked the electronic record, still no radiology report.

I found a new acupuncturist, since my last one moved to Colorado in December. As usual I tried to tough it out, but have not been entirely successful. The days are mostly fine, but nights are filled with bad dreams and nightmares. 

Last week the nightmare was me trying to find my eldest son in the children's hospital. In the dream my eldest also had melanoma, and had just undergone surgery. I was not allowed entry into the hospital unless I took all my clothes off and left them in security. I was the only lost naked person wandering the hospital halls. Let's just say that even in my dreams I am no Cindy Crawford. The only thing we have in common is that we are both 48. There was one person in the dream who would acknowledge me and help me find my son, TW. TW is one of my real life colleagues and is also kind and helpful in real life.

Last night's nightmare involved Melanoma Man fixing something on our roof. He had the brilliant idea to get to the roof by holding on to the garage door, pressing the garage door opener and riding the door to the top. In the dream things didn't go well with the garage door. MM made it to the top and was then catapulted to the pavement. We were in West Virginia for some reason. I knew to call 911, but couldn't remember where we lived. Of course I couldn't remember where we lived, because we have never lived in West Virginia! 

So in the morning I will walk on he beach with my Stephen minister. I'll say my prayers. I'll try out a new acupuncturist. Sweet dreams to all.

Wednesday, February 25, 2015

More time

Brain MRI is clean. We got more time. We can go around the board again!

Nobody Bothers Me or Why I am addicted to The Americans

I am madly in love with both Downton Abbey and The Americans. Downton Abbey is a wonderful escape into another world, for me almost like visiting a museum. It is full of clever quips, such as Mrs. Patmore's "Sympathy buttered no parsnips." The boys and I enjoy inserting little Downtonisms into our current day conversation. It's a weekly challenge. Usually it is Cousin Violet, played by Maggie Smith, who provides our phrase of the week.

I shared my love of Downton Abbey with my work colleague,TW. She, in turn, offered me The Americans. I watched seasons one and two in January so I could get up to speed in time for season three. I am utterly and entirely hooked, in large part because I was born in the 60s, grew up outside Washington DC in the 70's and 80's, when there were five television stations. The Americans has managed to work in all the appropriate cultural features of the place and time, including this advertisement which was routinely featured on WTTG when I was growing up. You will also notice the soundtrack, cars and clothes in the Americans are just so, Most familiar is that feeling perfectly captured of living two lives, one the day to day routine, the other a desperate battle.

On the surface the main characters Elizabeth and Phillip are small business owners, trying to raise a family. They do a lot of laundry, another reason I love the show. Their other story as KGB agents secretly living as Americans, puts them in constant peril.

Today I am the working Mom, taking a day off, at home on early release day, so I can pick up Butter from swim practice and iMac from band, bake Apple Pie Breakfast cake, make dinner in the crockpot, do an extra load of laundry. I am waiting for Melanoma Man's report from Tampa, after today's brain MRI and neurosurgeon visit. Everything is fine right now. I try to be in the right now.I can't remember what I had planned today besides laundry and dinner. I don't know what to have for breakfast or lunch. The phone rings. It is Butter, not feeling up to swim practice today. Then rings again, it is Melanoma Man. MRI is running behind. It is 1:20 pm and his 11:45 am. MRI has not occurred yet. They send him away to go get lunch. Back from lunch they give him an estimated MRI time of 3 p.m. His appointment to review the MRI with neurosurgeon, Dr. Etame, is at 2:45. Looks like this is going to turn into an overnight trip possibly. He hasn't taken any of his medications with him. I am warding off a headache and trying not to throw up in anticipation of news good or bad which may or may not come today. Telling myself I can do this, good or bad, together or alone. I can do this.

Saturday, January 17, 2015

Locked up and the Key Dropper

Last Thursday I went to hear this woman speak at my church about forgiveness, grace, addiction, faith, doubt, and fear. Nothing too heavy really. She dropped a key, another key to unlock my heart, so I can move directly head on into the fear, which is unfortunately where the miracles happen. I was supposed to go with Melanoma Man. However Butter was in crisis. The crisis was the misplaced worksheet. MM and Butter both told me there was no use looking. They had already done that. There were dried tears and a floor strewn with papers. iMac was getting ready for karate at 6:20. I told MM that one of us needed to stay home with Butter, that he shouldn't be left alone in this emotional state. MM volunteered to stay behind. "Call MK, see if she wants to go," he said. I was hesitant because MK is so nice, and Southern, and just a tad more conservative than I. She has been one of my biggest supporters through thick and thin and in spite of me being a Yankee. I called anyway. MK had to get get her child to band and serve dinner to husband and mother. "No, I don't think I can, but thanks."

Ten minutes passed and I noticed I had a voicemail from MK. YES! She said YES! I saved a seat for her. We listened and nodded and laughed and everything seemed to apply to all of us humans out there, old and young, conservative, and liberal. 

What struck me most was the part about being moved toward what you most fear. It occurred to me that I have been hiding these past few months, locked up in my own heart. Glennon talked about going to church anyway even when in doubt, waiting it out. Seeing that God has been sending invitations all along. It's just a question of my willingness to open the invitation. I think how can I possibly not run from my fear of MM's illness, fear of raising these boys by myself. How will I get out of bed in the morning if I allow it. I realized that this little piece of internet lets me face it, move toward it, stay present for the people who love me and the people I love. So in spite of making myself this visible, and this open to judgement I will carry on.

Yesterday MM, iMac and I went to see an educational specialist. iMac has the same absent, busy, creative, wandering, mind of both his parents. This year that has gotten in his way. He has done the work, although not always following the directions, not always remembering to hand it in. There is no leeway for late work in high school, just another zero. iMac is getting discouraged. After two moms from two different walks of life recommended the same specialist we made an appointment. I thought of talking to MM ahead of time and requesting that he disclose his Cancer diagnosis. Then I scrapped the idea altogether. We would just get in a fight. He would dig in his heels and be angry and that would color his whole impression of the specialist and whether he could help us help imac.

Lots of questions were asked of both of us, such as our age, our high school, and college GPAs, etc. MM said he was sixty six, which is close, off by a year. Later that night we debriefed about the meeting I mentioned to MM that I think he is only 65. MM did the math and said, "Yes you are right." He asked me, do you think I should have told him about the Cancer? I was stunned, but played it cool. "That might be an idea," I said. MM replied, "I will email him about the Cancer." Specialist emailed back quickly, thanking him for this important piece of information about a potentially major stressor in iMac's life.

This morning I met with my Stephen minister at 7 for our usual Saturday morning beach walk. The sun was coming out after five days of gray. I returned home around 8:15. MM was in Butter's room talking about a book they are both reading. Back in the kitchen I asked MM how his morning had been. "Terrible Sarah. Yesterday I forgot how old I am. This morning I couldn't remember the name of the operetta my sixth grade class performed. I think I'm losing my mind again."

"I've been thinking that if I need to have more brain zaps, I want Dr. Rau to do it, even though he is not at Moffitt anymore. We can look him up and go see him in his new practice in Orlando." MM said.

"Yes," I said. I accepted the invitation to show up and be scared and listen and allow him to process the events of the week. I neither directed, nor fled, exhausting. After all that I took a nap. I have a title to maintain, given to me by my family, the Snooze Queen. These titles are not just handed out. You must live into them and so I did.

Thursday, January 1, 2015

Happy New Year!

It is 2015. Surprisingly I am having no trouble writing 2015. I suppose I must have been ready for this one. I had a wonderful Christmas break. I took 3 days off Christmas week and 1 day off New Year's week. I didn't worry about lunch boxes, planners, homework or backpacks for two weeks. I binged on Downton Abbey during the month of December. I have always been a late bloomer. I felt the need to catch up with other Downton watchers before Season 5 started on January 4. Such lofty goals I have for myself. Speaking of goals, I am not having a New Year's resolution this year. Instead I am having a goal. My goal is to relax more. Downton Abbey aligns nicely with my aspirations for 2015.

I have been starting most days with coffee and the daily reading from Forward Day by Day, doing some Tai Chi here and there, saying my rosary now and then and art journaling. None of it on a particular schedule. If I create a schedule for these activities it will defeat the purpose. They will become resolutions, instead of goals and they may cease to produce relaxation. 

Melanoma Man got tickets for us to go hear Glennon Melton Doyle, one of my heroes, speak next week! I am ecstatic. MM returns to Moffitt Friday for "the usual," which involves labs and physical exam and usually no Big News. His next "Special," involving CT scans, MRI and often times "News," will be at the end of February.

Update from Friday's visit to Moffitt: labs are good, and no new findings on physical exam. 😊