Our Journey with ALL

As we move down the treatment path for my Honey Bear's Acute Lymphoblastic Leukemia, I will chronicle here the highs, lows, the good, bad, ugly, important and mundane. Helps me process-join me if you wish.

[mcgonagle]

A Widow’s Journey - 360 degree View of my Life after Loss

April 22, 2015

I will be sharing here the exercises/homework from my online grief class with Christina Rasmussen (Second Firsts is her FB page - and it’s phenomenal).

This exercise is about looking at my life and where I am now in relation to my grief process.  Bear with me...and here goes:

What did you used to do that you are no longer doing?

Go to a coffee shop and just hang out with friends for hours, talking, drinking, just enjoying a slow day where time almost seems to stop.

What are you doing now that you didn’t do before?

All of the shopping

All of the driving

All of the cooking/deciding what we (Sissy and I) will eat

Arranging or doing sidewalk maintenance/yard work

Dealing with drain clogs; lightbulbs that go out; smoke detectors that need batteries

When was the last time you laughed?

I don’t remember the last time that I just laughed, a big, uncontrollable belly laugh.

When was the last time you cried?

Monday night - don’t know why, just overwhelmed with the sad and being overwhelmed over every single day and what it takes to get through it.

When was the last time you went out on a date?

Before Allan died...with him.

PS: I’m not there yet, and currently doubt I will ever be there/interested.

When was the last time you phoned or saw a friend?

See friends weekly if not multiple times a week-I don’t use the phone at all if I can help it - I hate the phone.

When was the last time you told a joke?

A real joke and not just some smart ass one-liner?  Hmmmm. Can’t remember.

When was the last time you went to your favorite place?

Way too long...my absolute favorite place is Marquette and I haven’t been there in at least 5 years.

How long ago was the last time you felt truly alive and enjoyed a moment in your life—and what was happening on that occasion?

When I took my sister to see “I Love Lucy” at the Wharton Center and watched and listened to her reactions.

What have you done so far to start your life over? (List the actions you’ve taken.)

I moved into town and put my previous home on the market;

I joined the Neighborhood Association Board and recently agreed to be Treasurer of that Board;

I maintain contact with some very dear friends;

I plan activities that Allan was not interested in doing (Beerfest at the Ballpark; Turkey Trot 5K Walk/Run);

Today I got an email about a job with our State Department of Education that seemed perfect, so I took a deep breath and applied; I had to create my Vitae anew because I couldn’t locate my previous one on my computer, wrote the cover letter and attached both, completed the application and requested my official transcripts. It seemed like “Manna from Heaven” so I applied.

I scheduled, booked, and paid for a trip to Brazil to visit a dear friend in July...and purchased Rosetta Stone to learn Brazilian Portuguese.

What is different about you and the people around you? (Be specific.)

I’ve always been sensitive to what others are feeling-I believe that sense is heightened and I can tell when my friends are getting overwhelmed with my expressions of grief;

I was surprised by the people who had been in my life when I was part of a “we”...who are apparently uncomfortable now and have pulled away;

I am far less tolerant of BS than I had been and am not willing to keep people in my life who are full of it;

I am more courageous in my supervisory role, taking on employees who have been unsatisfactory for years and working to change their status in the organization.

It’s almost like the worst has happened in my life, so why be afraid of anything else?

Are you still trying to live the life you used to have?

Honestly...a little bit, but I’m letting go of it a little bit every day.

Which part of you has been locked up since your loss?

The free-spirited, joyful me.

Optimistic/positive me

Which part of you has been in charge since your loss?

My inner Eeyore-doomsaying, playing up the dread that wants to take over completely.

Have you challenged yourself lately?

Yes-I applied for a new job today, I confronted issues with an employee.

Have you been following the same routine every day since your loss?

No, because I have to go to work when I’d rather hide in bed under the covers.

My morning routine is pretty similar every day, and I am noticeably out of sorts if I can’t engage that routine.

How much of your time do you spend thinking about your life before your loss?

Less than 3 months ago, but I think about it every day, particularly when some little something reminds me again that Allan is gone.

 A series of questions that are important to ask at the end of this exercise are:

  What surprised you the most from the answers you gave to the above questions?

That I miss carefree time to spend in a coffee shop/cafe, talking, people watching, enjoying the slowing down of time.

Did you discover something about your life that you were unaware of?

I surprised the heck out of myself when I applied for that job today-my heart rate quickened, I’m sure my eyes dilated, and I jumped right in to complete the process. It was almost as if the old me surfaced and said, “Do it. Do it now before you have time to change your mind.”

[mcgonagle]

A Widow’s Journey - Reframing

April 17, 2015

Reframing has been bouncing around in my head all week...my losses below and my attempts at reframing:

1. Visibility as a child, extending to my adulthood in many settings - I can be in a group of people, try to talk, and be talked over with no one noticing but me. Strength to stand and be recognized/demand to be seen (what if I’m not enough? what if I’m not good enough?).      My invisibility permitted me to develop and hone my observation skills to a superhero degree. I am a master at observing and seeing what's REALLY going on, particularly with the students to whom I have devoted my professional life. I can read emotions in others when even they can't admit what they are. Pretty great skills for the work that I do...and to protect my introverted self when I am out in the world.

2. Physical connection.      The lack of physical connection in my family permitted me to learn the critical importance of it for lives and souls to grow and prosper. I am a toucher (appropriately, of course), and a hugger...and I know and live that there is no substitute sometimes for a wordless hug, holding someone firmly and for a long time so that they can feel the love move into them, and the stress and fear slowly leaving their bodies. I will always err on the side of providing physical connection.

3. My Allan - the one person who saw me and saw ME-and who was able to show affection through touch.    Because Allan saw me, and knew me, he taught me to begin to know myself. To know my skills, to know my strengths, and to confront the places where I needed to learn. He was the one witnessed the work that I do for children and put names on the things that I just do that I didn't name: Champion for children-always bringing the focus back to the children whether I aggravated school districts or parents. Delicate skill in navigating disagreements between people...not engaging in confrontations, but building a bridge between people with horrendous disagreement.

What I am learning from the loss of my Allan is that it is time for me to believe in me the way he did. His passing was also a passing of the torch from him to me...and I feel him more now than I have since he passed. I'm finding pennies now; I'm feeling a brush of air by my face when there is no breeze.

I see now that as a result of my losses, I have learned many things that will stand me in good stead as I move forward. The passing of my Allan took away the last thing that I can hide behind...I permitted him to carry my banner because I couldn't own it. It's time to own it...and that's a little scary.

Plug ins this week:

Embracing my new role as Treasurer of my Neighborhood Association.  Interesting that I keep putting myself in positions of using math when I have hated math all my life...and rarely been good at it.

Letting go of my need to be affirmed constantly by others. Working to be comfortable in my skin, and doing what I want to do while inviting others to join me rather than waiting for an invitation from them.

[mcgonagle]

A Widow’s Journey - Roller Coasters

April 13, 2015

Here is what I posted in my Grief group as part 1 of the homework assignment:

“I had not noticed before Tuesday how very stuck I am. I go to work; I keep us fed (not healthily, but we're fed); I care for my pets (thank the Goddess for them); I spend time with friends. I have flashes of clarity and desire to move, but they are quickly muffled. Aspects of my work are enjoyable, challenging enough, and more than doable. Other aspects are excruciating in that the wheels move so slowly and the kvetching, pissing and moaning before going anywhere when I can see the path so clearly is maddening. Never having been patient with "stallers of progress" before my Allan's illness, I am completely unable to tolerate it right now. That can be a problem as I am in Education. I am principal of a Special Education school, and the Compliance Monitor of the county in which our school sits. A certain amount of diplomacy is expected, and right now I'm just not in a diplomatic mood. I want to scream: "Suck it up, Cupcake! Do you think any of your petty little worries matters a hill of beans in the end?!" So-my story: I am the middle child of a typical, middle class family of the 60s. My older sister was born with a cognitive impairment and life-threatening seizures. My younger brother was born after a complicated pregnancy and the cord being wrapped around his neck. There are only the three of us. My father was a professor of Packaging at Michigan State (he retired 9 years ago and is still clicking along-sharp as a tack at 86); my mother was a registered nurse working in hospitals and doctor's offices throughout my childhood. She retired about 30 years ago, and is still with us, although altered by her stroke in ways that she does not notice - nor does my brother. My feelings of being invisible began way back then. Sissy needed much attention as she was medically fragile...I got that, it was the only life I'd known, and she was my hero, my big sissy, and my first best friend. She is now 60 and lives with me as my parents can't care for her anymore...and while her seizures ended in 1975, she still has lots of medical stuff going on. My brother (the only boy and the youngest), whose survival was not assured before he was born, has been the golden haired child for most of my life. And there was me; middle, but also oldest in many ways as I would do things with my life that my sister would not be able to do. I was the completely uncomplicated pregnancy, the easy birth, the self-sufficient one...the one easy to ignore. To say that I have experienced anxiety in my life would be an understatement. In 4th grade, I could barely function due to anxiety-it was thanks to a wonderful principal and teacher that I made it through. My family was never demonstrative in their affections (they still are not-hugs are awkward at best), and I have always been a toucher and a hugger. Allan always used to say that he thought I was adopted as I am so different from the family into which I was born. There's more, but I will fast-forward to Allan's illness. Summer of 2013: Allan was a very active guy; he'd get up at 5 a.m. to go play racquetball for a couple of hours, then head to a restaurant for which he did promotion through social media for several hours, then home to work on the garden and the house - all while I was at work at school. Beginning about May 2013, Allan was very tired - harder to get up in the morning, quick naps in the afternoon. Beginning in July, those quick afternoon naps were expanding daily. By the middle of July, he was sleeping for 4-6 hours every day after getting home from a brief stint at his restaurant client. We were both concerned, and I knew him well enough to know that I couldn't be the one to suggest the doctor...but he did get there on his own and made an appointment for a physical in August. On July 25, he woke and his entire face was swollen-nothing else, just his face. The summer before, my Dad had gone through that and been diagnosed with myelodysplastic syndrome - a pre-leukemic condition. We were now both a bit freaked out. Doctor couldn't get him in, so they sent him to an Urgent Care and scheduled an appointment with the PA on July 30. A tiny bit of blood in his urine sample at Urgent Care made them do a blood draw. We got a call the next evening telling us to get to ER as his platelets were low and he could bleed out. ER did their routine things, including repeating the blood test and sent us home at midnight saying "everything is fine". On the way home, I'm reading the blood report by the light of my phone and I see that his White Blood Cells are high and his Neutrophils are in the basement. I Google that pattern and the first thing that comes up is "Leukemia". We worried all weekend about whether we should go to a different ER, and then it was Tuesday. PA and doc thought it was just an infection-gave us a ZPak and repeated the blood just to be sure. July 31 - just when we thought we'd crossed that hurdle and all would be good, Allan was standing in line at Meijer with a full cart of groceries and the doctor himself called saying, "Allan, this is bad - we can't treat it outpatient, you have to go to the hospital, but go to admitting, I don't want you in the ER". Allan called me, I left work immediately to meet him at the hospital and called my folks on the way to let them know. The response from my folks was under-whelming at best, infuriating at worst. No real concern...and no one came to the hospital with us. August 5 - preliminary diagnosis of Acute B-cell Lymphoma and recommendation to be transferred to UM Hospital or Karmanos in Detroit. August 6 - we choose Karmanos after some research and transfer sets in motion. August 9 - discharge to transfer to Karmanos-Allan elects to be driven there by me and our niece who is traveling in from Philadelphia. Discharge diagnosis: Acute Lymphoblastic Leukemia. I take Allan home, he walks his garden, and we set off for Detroit. Karen and I spend the weekend with him at the hospital - I stay through Wednesday - many tests to be done. August 12 - first meeting with Dr. Schiffer. He tells us "All is treatable, and curable." He wants to try an experimental course of chemo with Allan-we agree. While getting the chemo, Allan does well; after the chemo is another story. He is discharged home with weekly visits (after a lengthy stay) for follow up chemo. He can't settle; he moves from bed to bed to floor to couch to bed before sleeping. He wants me with him wherever he goes; he wants a shower at 3 a.m. as that helped him sleep in the hospital; he gets constipated-badly. Several more hospital stays; he gets neuropathy so badly that he cannot walk without a walker. We shave his head 9cute head) as he gets depressed seeing the hair on his pillow every morning. We are set for another round of inpatient chemo so that we can make sure he stays in remission-on admission an infection is found, so no chemo...but since he's there, they do another bone marrow to confirm the remission. Surprise! Now he has myelodysplastic syndrome, which means that his marrow is not making normal cells. Blood test reveals also the presence now of Acute Myelogenic Leukemia. We are sent home to enjoy the holidays, formulate our questions, and then decide what to do. Allan decided for treatment; said treatment began on February 8, 2014. He was in the hospital until March 7; had a fungus in his lungs; spent some time in IMCU because we couldn't keep his sats up; they wanted to do a bronchoscopy but we said no as we were sure that with his breathing as fragile as it was, he would end up on a respirator which he didn't want. Home on March 7 - very little progress and much deterioration-every time I turned around he had fallen on the floor. March 24-home health care nurse urges an ER visit -we go. March 25-Allan calls "game, set, match" to leukemia and comes home to die. April 5, 2014 at 8:50 pm, he was declared dead by hospice nurse. I visited Dr. Schiffer one last time in June to thank him for the time he gave us, and to ask a couple of questions. 1. We were done when the AML showed up, right? (Yup); 2. The blasts were back in Allan's blood before he "pulled the plug"-was it time? (Yup). Received a hug - I'm guessing he gets yelled at more than thanked when his patients die. Allan's chromosomes were messed up from the beginning, making him more complicated than the already complicated "normal" course of ALL/MDS/AML. We even found out that he was chromosomally female (2 X chromosomes), but had just enough Y chromosome embedded in one of the Xs that he presented as male. No wonder we couldn't have children... So...my waiting room has been, for all of my life, waiting. Waiting to be seen; waiting for something to happen; and more recently, waiting for Allan to come back. I haven't quite given up on the hope that he will...even when I know he won't in my head. My losses? 1. Visibility as a child, extending to my adulthood in many settings - I can be in a group of people, try to talk, and be talked over with no one noticing but me. Strength to stand and be recognized/demand to be seen (what if I'm not enough? what if I'm not good enough?). 2. Physical connection. 3. My Allan - the one person who saw me and saw ME-and who was able to show affection through touch. And now he's gone. Sorry -this is long. Thanks for letting me formulate it here before I work with my "chosen ones" to help me reframe my losses and thoughts. Enough-I can't see the screen through my tears.

Since the class last Tuesday, I’ve been on a roller coaster with the highs including contentment, peace, and calm...and the lows containing dread, anxiety, nausea, and fear.

I’ve wanted a group for this work for a long time...and now that I have it, I am both attracted and repelled by what is surfacing. I take long breaks from FB as the level of pain expressed by each of us is more than I can take on some days.

Last night I slept hard...and had dreams of Allan...and expectations. Expectations of others...and my willingness to hand my very soul over to the expectations of others. I woke lightheaded, groggy, and headachy as though I had drunk a few bottles of wine the night before.  I had only 2/3 of 1 beer. 

I feel that I am doing the internal work I need to do...and I am making progress...and it’s hard work.

I also realized this morning that part of what I’m feeling is anger...still.  Or for the first time? Anger that Allan is gone; anger that the doctors couldn’t save him; anger that I don’t think he really tried-once he was diagnosed, he went through the motions of trying, but didn’t do the emotional/psychic work needed to really try; and anger that I’m angry.

At least it’s a rainy day and I can indulge in my status as a Pluviophile...rainy weather actually cheers me up...

Go figure.

[mcgonagle]

A Widow’s Journey - Losses Large and Small

April 8, 2015

The title of this blog lets you all know what my BIG loss has been.

The man with whom I spent more than half of my life is gone; gone a year now. I’ve been feeling that it is likely time to move forward, yet it is hard to do. Cooking is not one of the things I have consistently done, so Sissy and I have been eating out...a lot. This week we have not eaten a home cooked meal even once (except for breakfast).

I want to go back to cooking...and I can’t quite get myself there. I actually did better when Allan was sick...of course, I had to feed him as well.

Reflecting on “loss” after yesterday’s class, I’ve recognized some other losses in my life. Here are a few.  Keep in mind I’m not trying to whine-I’m pulling them up to acknowledge them, recognize how they are impacting me now, and put them away-hopefully for good.

*Loss of a “normal” childhood due to Sissy’s disability and life-threatening seizures when we were small (result: a sense of “loss”, but no real “resentment” of it-it was just the only life I’d ever known);

*Loss of respect for my emotions as I was not permitted to express them as a child-particularly anger and fear. I was not ever permitted to stand up for myself, nor was I permitted to be afraid (yah, that worked)-(result: incredibly fearful of most everything-especially things outside my control; inability to stand up for myself; difficulty dealing with conflict; no respect for my own processes and emotions.

*Loss of “intimacy” with others. The family in which I grew up was not big on displays of affection. Hugs were extremely rare and I honestly don’t remember any hugging until I was an adult and I initiated it. “I love you” was never said. It was present in writing in birthday cards, but never said out loud.

*As the middle child (who was in many ways also the oldest due to my sister’s disability), I have often felt invisible in all areas of my life. I can be in a meeting, talk, and someone talks over me. I can be in a group of friends, and someone talks over me.  I just stop talking and stop trying to interact-I pull in and withdraw. The first time I remember that this happened, I was in the 3rd grade trying to talk with my teacher, and was completely ignored. I felt small, insignificant, and completely humiliated.

*The Loss of the ability to have children as Allan was sterile-and we found out last year why.

The Loss of people I thought were friends and turned out to be toxic, egocentric narcissists. The letting go process is difficult and painful.

*Alone. I have always felt incredibly alone. Until Allan...we were connected to one another even when we were not in the same place. I only had to reach for him psychically and he was there.

And now he’s not.

And I don’t know how to move forward without that constant loving (sometimes aggravating) presence in my life.

I’ve never been treated as though I was particularly likable or lovable; Allan was never completely satisfied with our level of intimacy. And that hurts so much right now.

So what am I afraid of now? Going out into the world again and having it prove to me...again...that I am NOT likable or lovable; that I am not worthy of companionship. That I am not worthy of a new life.

I keep trying. I make plans...and chicken out. I buy concert tickets...and chicken out.

I reach out to others awkwardly, and fail to connect.

And I am still physically exhausted from the 8 months of Allan’s illness, made worse by the emotional exhaustion I feel at the end of every day. It takes so much energy just to get through every day that I have nothing left to cook, do laundry, or clean....

And the tears roll down my cheek. Today has been a very hard day.

[mcgonagle]

A Widow’s Journey-Of Primary and Secondary Loss...and the Space Between Lives

April 7, 2015

Today was the first online Grief/Re-entry class with Christina Rasmussen. There were 100 of us on with her live. We learned that she was a grief counselor before she experienced her primary loss-the death of her husband.

I have not read her book as many of us had not, so today Christina’s goal was to teach us about the “Waiting Room” or (as she explained it), the place between our lives “before” and the life we seek to re-enter.

As she talked, she hit so many of my “trigger spots” that I found myself in tears several times during the course of the class.

We learned that our Primary loss now is probably not the only loss that is keeping us stuck; that previous losses, and/or secondary losses are likely adding to the fear, the confusion, the paralysis, and the need for the safety of this place between lives.

We all talked about going through the motions; moving through our routines; keeping our homes and families humming...and feeling dead inside.

We talked about the pain of lost friendships when previous friends have discomfort with our loss, with our newfound loss of inhibition/social filter; with our obvious and pervasive pain.

Our homework is to visit our personal “Waiting Room” again...and again if necessary...to discover all of the losses in our lives that are making this loss more difficult.

It should be an enlightening 2 weeks until the next class.

[mcgonagle]

A Widow’s Journey-Spring Cleaning

April 6, 2015

The first day of year two without my Allan.

I slept well, with the help of an amazing headache cream that I rub on my head when a headache hits and it just soothes the pain away.

Allan signs today: his ticket from the Marquette Beer Fest in 2009 and a Sandhill Crane flying over when I went to pick Sarah up.

Sarah did come over and we cleaned and cleaned. I won’t let her touch my bedroom because...cyclone, disaster, laundry basket exploded...and cats.

I did dishes, cleaned out the fridge, and tackled my room. Sarah got the floors, the tables, and some dusting. She also got rid of the fluorescent light hanging under the TV table...yay!!!

Allan built that piece of furniture and had put the light underneath so that he could grow seedlings for the garden...not being much of a gardener, I don’t need the light. The shelf, however, is perfect for my TV and Genie....

I have, however, ordered some garden seedlings: basil, oregano, cherry tomatoes, and jalapenos.  I’ll also be looking for some lemon verbena, catnip, and pineapple mint...herbs are my favorite things to grow and I have some awesome window boxes for them...maybe I’ll make some pesto...

On to the rest of the day...it’s lovely here-temps in the 60s and some sun. Spring is finally here.

[mcgonagle]

A Widow’s Journey - My “New” Life Enters its Second Year

April 5, 2015

I have seen profoundly simple and deeply touching posts on Facebook: “Almost to the minute that I said a permanent good by to one of the finest men I’ve known.” This from a man who sat quietly with Allan a year ago last night and talked to him. Just talked. Quietly, gently. I don’t know what he said to Allan as it was a private conversation so I stayed back...and watched. I watched the love pass from this man (who had been terrified to come and see Allan on his death bed...and came anyway) to my beloved Allan.

“A year ago said goodbye to Allan.”

On this day, as I enter the 2nd year of my life without the love of my life, and the best friend I ever had, I can now look to the future without dread in my heart. Pain, yes...but the dread has gone. I still try not to think too far ahead, but am able to keep moving and pass milestones.

Like selling the house we shared, which is sold (fingers crossed for financing and closing to go smoothly). Finding a home for his kiln that it looked like I would have to scrap.

And finding an online Grief class that starts Tuesday.

And taking on things I never would have attempted before...like taking on the Treasurer position of my Neighborhood Association when I’m still figuring out the dynamics and politics of the group...and knowing I need to learn Excel more formally now...and some basic Accounting so that I will do a good job.

And buying Rosetta Stone so that I can understand more when I get to Brazil in July.

And just getting up and breathing every single day.

Today’s goals may seem small, but they are huge for me:

1. Go to brunch with friends;

2. Come home and make my bedroom my sanctuary instead of the place I sleep and dump things I don’t want to deal with right now.

(And find an online Excel class...  :)

A little blurry, but honeysuckle from last Spring.

[mcgonagle]

A Widow’s Journey - The Day Before the Final Day

April 4, 2015:

April 4, 2014 - Karen and Rick had gone home; Allan was only semi-conscious. Messenger conversation with one of his beloved nieces (who is an RN in Philadelphia and works in ICU) led me to increase his morphine dosage and frequency to keep him sleeping, which was his wish.

He was very clear about his strong desire to “go” in his sleep. I sat by his side through the day, listening to him sleep, sending him love like a laser to his heart and his third eye chakra. Often I would stand over him, kiss that chakra, and stroke his head telling him, “I love you so very much; and I will miss you more than words can say. I will be very sad, but I will be fine. It’s okay to cross over.”

The 8 months from “OMG-we have a problem” to “Goodbye” were the hardest I have spent in my life. During that 8 months, I was fighting for him every day. Sometimes I was fighting the doctors (never the nurses-they were the best), sometimes I was fighting Allan. To eat. To drink. To stop trying to walk without his walker every time I turned my back on him.

Visitors had pretty much stopped - since Allan was not able to engage anymore, this was best as I sure didn’t have the energy or desire to entertain people, and Allan was who they wanted to see.

Time had stopped having any meaning at all. We moved through the days around Allan’s needs-for medication, for affection, to have his depends changed. Chance and the cats jumped up to lie with him whenever they had the opportunity, offering the Power of the Purr and the Paw to ease his passing.

It was a Firkin Friday at his beloved Soup Spoon Cafe; a large contingent of his posse had attended, finished the Firkin in record time...and showed up on our doorstep at 8:30 pm, apologizing and saying that if it was a bad time they would go...of course I told them to come in.

We spend the next few hours talking, telling stories, laughing, crying, and toasting Allan.  I know he heard every laugh, every story, every tear.

When they left, I stroked his head gently, kissed him, pulled up his covers and went to try to sleep, grateful for the love and life that Nick, Ed, TR, Joe, Elitza, and Chris had brought into the house.  Watching them talk with Allan was uplifting and heartbreaking at the same time. 

I love him. I miss him with every beat of my heart, and I hope with all of my heart that he is at peace.

[mcgonagle]

A Widow’s Journey - Finding Support that Fits

April 3, 2015

No, I don’t mean a bra.

Allan’s “Angelversary” is Sunday...I had planned to be in the heart of my Philly family for this one, but circumstances dictated otherwise.

So, I am here.  In the bosom of my chosen family. And so far, I’m doing okay. We’ll see what the weekend brings.

I have mentioned before that while my friends are some of the most amazing people on the planet in their embrace of me and tolerance/support of my process, I have been searching for a support group of people who have been through loss and can read my shorthand without long, exhausting explanations.

I tried on a couple of things that didn’t feel right...and kept waiting and watching.

This past week, a page I follow on Facebook (Second Firsts) published an offer for a 3 month class (twice a month live meetings over the internet) for $30...I signed up.  I’ve been posting on the page; reading the posts of others; and feeling a sense of relief that I have not felt since Allan was diagnosed.

Classes begin on Tuesday, they occur at Noon for an hour.  I believe that I will make the time to participate in the live meeting for these 6 sessions.  I have even recommended it to two friends for consideration due to the welcome I have received...and the comfort that is offered.

I also reached another grief milestone this week-it appears that the house I put on the market on Monday is sold.  Awaiting confirmation of financing and inspections to finish-expect to close in May.  I feel as though a large boulder has rolled off my shoulders.

And I’m a little sad. We had such high hopes when we bought that house. It was in the country, had lots of property and a firepit. It was a ranch; cathedral ceilings; laundry room...and then everything went to heck in a handbasket...although I am deeply grateful that we had a ranch for the duration of Allan’s illness - I can’t imagine trying to get him up and down the stairs in our other house.

For your viewing pleasure-my Angel making a Snow Angel last winter...

[mcgonagle]

A Widow’s Journey - Lessons

March 29, 2015

I’m tired. I’m so tired, I’m tired in my bones. In my fingernails, my toenails, my hair.

I’m physically tired and emotionally exhausted from the lessons I’ve been learning over the course of time since July 31, 2013.

I am completely flabbergasted to learn that some I have thought of as friends do not understand...nor are they willing to try to understand...the daily searing pain of just putting one foot in front of the other every single day.

What I don’t need is their tongue-lashings and way over dramatization over a comment by me weeks ago - more than a month.

Really?! You really think I have THAT much influence over ANYbody?

You really think your inability to cope with some honest criticism due to the venue of that criticism even comes close to what I I cope with every single minute of every single day?!

You’re really that immature, delicate, and spoiled?

Get the fuck over it and yourselves. Latest conversation is all about them...until I remind them that none of this melodramatic chapter is, or ever was, about them. Then I get silence.

Grow up. Get over it. Let it the hell go.

And God help you if you ever have a chapter such as I have had...it will probably kill you.

[mcgonagle]

A Widow’s Journey - Friends and “Friends”

March 27, 2015

I had always heard that people who lose their spouses run into people who had once been friends and were incredibly supportive during the spouse’s illness and “dying time”.  Once that is finished, they disappear...quickly, or over the course of the first year.

I honestly didn’t expect it of any of our support group...and yet it has happened...or seems that it has.

Not sure if these folks are uncomfortable now that I’m alone...and the women are afraid I’m going to steal their partners...or that they tolerated me because of their love for Allan. and I’m perhaps not so much their cup of tea (as it were).

Either way it hurts a bit...after I get finished being surprised.

How do I know they’ve turned away? I have tried repeatedly over the course of the year to make contact, spend time, etc.  And had an unsettling occurrence that I posted, and the response was to scold me about it rather than try to understand my angst and gently guide me.  Not to mention that nothing was done to correct the situation, and the individual in question has all the power in the world to make a change.

I felt bullied...and don’t feel I deserved it.

I get it, gang. It’s been almost a year. It seems that some believe that I should be “over it” and moving on....

I’d like to say I’m sorry...but I can’t be yet. I don’t like to disappoint people and I HATE being a burden on others.  And I fear that my continued grief process is beginning to turn people away.

I’m not trying to turn people away. My fear of doing so keeps me from talking about my issues far more than anyone realizes, trust me on that.

I may tear up when I am with others, but when I cry...really cry, I cry alone.

I try to be attentive to the needs of my friends; I feel deeply for each and every one of them...and I am beginning to weed out those who apparently were Allan’s friends.

If you are asking yourself, “OMG-is she talking about me?”...trust that I am not. Those of whom I speak have no idea what they are doing or how much it hurts.

And the day begins...again. Even though my world is still reeling. In many ways, I am still numb, and the layers of numbness peel off slowly.

Thank you from my heart and my soul to those of you who continue to walk beside me on this journey. I will try so very hard not to burden you with my pain. If I hug you a little extra long or extra hard...just go with it. That’s really all I need from you.  Just be there.

And please be patient with me...I’m trying, really I am.

A Man and his Dog:

[mcgonagle]

A Widow’s Journey - The Main Event Begins

March 25, 2015

A year ago this very minute, I was sitting at my dining room table with the Hospice intake Social Worker answering all the questions while Allan huffed on the love seat.

Mary was a lovely woman who was calm, kind, and gentle. She got to the part where she had to tell that “...if he changes his mind...”  From the love seat comes “I’m NOT going to change my mind!” She tried again. Again the outburst.

This time she whispered, and I motioned to let her know that I understood. She told me to expect a “comfort box” to be delivered the next day; she ordered a hospital bed to arrive the next day; we got the oxygen arranged with McLaren and contacted the other provider to come pick up their machine.

Just 3.75 hours earlier, I had finally found where Allan was (he was in ICU, which they had not told me on the phone).  I had had a tense conversation with the intern or resident assigned to Allan about Pulmonary’s insistence on a bronchoscopy (again with that damn thing). I replied that if they could convince me that the potential benefit outweighed the probable risk (ventilator for the rest of his life...in the hospital and unconscious), I would entertain the notion. She mumbled something about Pulmonary needing to have that conversation with me and we ended the call.

No one from Pulmonary came to talk with me when I arrived at the hospital.

I saw the local Oncology team; from them I found out that the blasts were back in Allan’s blood (hadn’t been told that either); doc tried to blow sunshine up our skirts “...that happens sometimes-they come back and then they go away.” 6 weeks post-treatment?  Not likely.

Allan insisted on going home...NOW.  I did try to talk him into staying overnight so that we could get Hospice on board and get the hospital bed delivered.  He was having none of it.

I stopped in mid-sentence. Remembered my promise to him in August: “Whatever you decide you want to do; whenever you decide-I will make sure your wishes are honored.”  I said, “Okay.”, turned to the team and said, “Order us an ambulance, please; what can we get done tonight to get Hospice started.”

They jumped into action, and we were on our way home, ambulance following me, by 7:30.  Hospice arrived at 8:30...and we were off.

He huffed and snorted most of the night, but finally went to sleep.

Me? Not so much.

In the photo below, Allan had asked me to climb in and hold him while we waited for the ambulance to take him home for the last time. The tears were running from my eyes.

[mcgonagle]

A Widow’s Journey - And so it Begins

March 24, 2015

It’s 3:50 a.m. here. I woke at 2:30 following fitful dreams of a year ago.

Allan’s very last visit to any hospital began today minus 1 year. The weekend had been rough. Refusal to eat or drink, even after agreeing to do so to at least get as far as our April 3 scheduled bone marrow biopsy. Agitation when awake; mostly sleeping. Spotty bathroom success, but commode beside the bed helped...and there were still strange spots on windows and walls...until I cleaned them. I was delivering Ativan every 3.5 hours (we could give it every 4-6 hours) to keep the anxiety to a minimum.

Home Health Care nurse arrived to change his PICC dressing and called me immediately saying he looked “awful” and sounded “awful” (lungs/breathing). He was still on oxygen, but had started that awful wheeze again. I agreed (I mean, really? I’d been watching him like a hawk all weekend), and sent a text to Kim O’Riley-Dr. Schiffer’s Nurse Practitioner. Between the three of us, we decided that he should go to the ER...and Kim said I could take him to a local ER, he didn’t have to go all the way to Detroit.

Now I just had to convince him. When I told him that Sandy, Kim and I had talked and Kim thought he should go to ER (he loved and trusted Kim), the first response I got was “NO!” I kept telling him that Kim had said “local”; it finally sunk in and he agreed to go.  I called an ambulance-there was no way I could get him to the car, he was barely able to stand. And away we went.

He was in a room by himself in ER until they could get him a room; IV fluids were started and they had done a CBC with diff (comprehensive blood count with blood components reported separately), and he was neutropenic again (no neutrophils-no ability to fight infection). I finally left at midnight after extracting a promise from the nurse following him to let me know when he was transferred to a room.

I went home with a heavy heart and a pall of dread hanging over me. I slept from exhaustion but not well.

Pictures fro February 9, 2014. We had been so hopeful.

[mcgonagle]

A Widow’s Journey - Journey Milestones Approach

March 20, 2015

A year ago this weekend, a group of us were scheduled to meet at a local “watering” hole to make plans for an appreciation event for a favorite gathering spot.

Allan was not improving, and was actually declining...we had been to Karmanos the Thursday before the weekend and Dr. Schiffer had indicated that he was encouraged by Allan’s numbers. We scheduled another appointment for April 3, which included a bone marrow biopsy to see where we were with the leukemic cells.  Remission is a two-piece creature: 1). No cancerous cells; 2). Marrow is actually making normal cells. We needed another biopsy to look specifically for #2.

The very next day, Allan stopped eating and drinking, and slept most of the time.

The meeting was scheduled for Saturday - I could not make myself leave the house, things just felt “off”. So I attended by Skype.

Finally on Sunday, I asked Allan if he had made a decision he hadn’t bothered to tell me about as no amount of tempting him with favorite food and drink would coax him to consume either.

His response?

“I guess I have”.

This weekend will be hard, but I have things to keep me occupied.  Hoping for tolerable wave heights, and no tsunami of grief washing over me.

This week I have had many moments I wanted to text Allan to tell him something...

Blech.

And Spring arrived at 6:45 pm EDT today.

[mcgonagle]

A Widow’s Journey - Northern Lights

March 19, 2015

The photos of this week’s Aurora have been beautiful. And full of memories, of course.

While I was consulting around the state in the areas of Autism, LRE, and behavior, I had the amazing opportunity to present in Eau Claire, Wisconsin to a group of educators there.

Lansing to Eau Claire is an 8 hour drive, minimum, and I was scheduled to be back the following day for either Clare-Gladwin or Gratiot-Isabella. Allan wasn’t about to let me drive there, present, and then drive back all by myself so he went with me and we took turns driving.

We were driving back home across US 2 between Escanaba and Manistique when the Aurora BURST across the sky in a blaze of glory. Greens and blues and waving in the interstellar “breeze”. We were able to watch it for at least 100 miles.

On another consulting trip to the UP, we met at the folks’ cottage in Indian River for the weekend. Went to dinner at the Brown Trout and when we came out, there was an odd greenish dot in the sky.  We watched it, wondered what it was, and I guessed “maybe it’s an Aurora starting”...as soon as we got back to the house, it exploded across the sky, all green this time, in curtains that again waved in the “breeze”, and we swore we could hear it as it undulated in the sky.

Amazing memories...

[mcgonagle]

A Widow’s Journey - Sleep

March 17, 2015

Since our personal “D-Day” (August 5, 2013 - Diagnosis Day), sleep has been a trickster.

Alluring, teasing, promising...and then delivering sporadically.

I have not slept consistently well since early in that summer...and even then, thinking back, life was unsettled as we both had worries about Allan’s extreme fatigue.

I talked him into making a trip with me to Traverse City that late June for a conference I was attending. We stayed with friends and we had a great time...and yet...there was something “different” about the whole trip. A different “feel” that I can’t put a label on. Turns out now, that he was already sick-we just didn’t know it yet.

When we got our diagnosis, sleep became even more elusive. There was so much to do. So much to attend to for Allan.

Being present when doctors visited; being present as much as possible for Allan’s spirits. Being the one who encouraged Allan to assign a Patient Advocate and back up “just in case”. And so much more. Helping him through constipation; cleaning him up-repeatedly-when the constipation finally ended. Showering him at 3 a.m. when he couldn’t sleep. Following him from bedroom to bedroom because he needed to move, and couldn’t stand being without me. Flushing his PICC lines. Keeping Chance subdued so that he didn’t drive Allan crazy with his enthusiasm. Cooking. Driving everywhere. Working when I could. 

I so hoped that “just in case” would never come...and yet somehow, I knew in every fiber of my being that “just in case” was here.

My heart ached for Allan; for his love of our home and property; for our lives; for us. For me. I remember walking the yard and woods. I remember walking the CN Maintenance Trail with Chance. I remember watching the birds at the feeders.

And I remember crying; the tears coming freely and profusely, beginning the grief path that I am on today. I grieved that Allan would never really walk his garden again. That he would not cook over the fire pit again. That he would never again watch the seasons change in that place that we loved.

And I was right. He did do a short walk of the garden the day we transferred him to Karmanos for treatment while we waited for Karen to arrive from Philly. It was so painfully short as he was so tired.

He was able to do one short walk of the CN Trail with me and Chance after his first round of chemo...and everything went to Hell in a handbasket very quickly after that.

Allan was never one to do “being sick” well. I know that sounds odd, but some people can handle being sick and working to come out on the other side. Even when Allan had a cold or the flu, he was miserable, difficult, and hard to live with until he was well.

I told him once that I would give anything if I could go through this for him. I meant every word. He was such a sensitive soul (contrary to some behavioral evidence ;) that he was worn down so low and his spirits were so assaulted that I didn’t have a long enough lifeline to pull him back.

I tried once to get him to think about the “after-treatment” and to plan the freakin’ huge party we would have to celebrate. I said, “Think about it; plan it; plan the hell out of every detail. Focus on THAT instead of how bad you feel.”

His response? “Caryn, I can’t do that.” I honestly think he had given up from the start...and it breaks my heart.

A colleague lost her Mom a couple of years ago after a short illness; she had been very close to her Mom. When her Mom’s 2-year “death-iversary” came, she didn’t understand why it was harder than the first.

I think I’ve figured it out.

No matter how long or short an illness is, while one you love is hurting and struggling and fighting to live, you are fighting right beside them, trying to pour into them the energy and strength that they no longer have. I think you spend that whole first year “after” recovering from that blitz of sharing your essence with them...and you’re so tired. So very tired.

At the one year point, we are still sleepwalking. We are still numb.

By year 2, we are waking up...and finding the pain right there waiting for us.

How special.

Limes in Ana’s back yard in Penedo, Brazil.

[mcgonagle]

A Widow’s Journey - Reminders

March 15, 2015

Spring continues its march toward us - with brighter days, softer air, and a generally improved mood everywhere.

I move toward my first death-aversary with trepidation and caution. I probe tender spots in my memory and grief carefully, not wanting a cascade when I am with Sissy and dogs - they all get so confused and worried.

The hardest part is that no matter where I go or when, I have a memory of my life “Before”.

My life with Allan. Memories of little places we found to explore together; memories of places we drove and enjoyed the scenery. Memories of connections that now feel empty.

Today I went to the Casino with my folks as our “family celebration” of my birthday. Allan was around every corner. When we went together, we would each do our own thing, but we checked in with one another often...and I could always feel him there.

i could almost feel him today - kept expecting him to come around the corner to check in every minute.

And he wasn’t there.

A chipmunk who climbed into Allan’s hand...pretty cute.