Tag Archives: travel

Reporting In

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Some periods of time are too dense with experiences to narrate. Add in the sharpness of the struggles, their lack of resolution, a heat wave, a chemo cocktail designed to knock you on your ass and a bit of silence might ensue. My focus is on putting one step in front of the other. Surviving.

The good news is we are surviving right now and still imagine August as a calmer month. Perhaps I will have vignettes to share then. I pack for my third trip to NYC since June 21st. This trip I do solo, despite my husband’s protests. With an uncertain travel future looming and mounting costs, I need to know that I can make whatever path I follow sustainable.

The last trip really felt vacation like even if we never got much beyond the infusion suite.

This trip will be down and dirty. I will be late to arrive, early to leave, just getting in my 29 hours of infusion time. Turned away at the deluxe, free cancer housing in midtown Manhattan with a terrace to delight

Me, reclining with chemo overnight bag pumping away, on the cancer terrace.

Me, reclining with chemo overnight bag pumping away, on the cancer terrace.

and a waiting list to match, I got adopted by an old colleague in West Harlem – a touching kindness and a treasured connection to my non-cancer life.

In lieu of truly filling you in on the now, I offer a brilliant short piece written by my first cancer pal, Bev. She has offered me solace as I learned to live with terminal cancer. This week she entered hospice. She will leave this world with a bit of my heart. Enjoy Mystery Bag, a little peak at living with cancer.

Mystery Bag by Bev Lipsitz

I was in a writing group for women with cancer. One day, the facilitator brought in a bunch of paper bags. She told us to pass them around and without looking, feel inside each bag.

Then she gave us each our own bag, and told us to reach inside,  and still without looking,  write about what we found.

When I felt inside all the bags, there was only one item I could identify. It felt like a swizzle stick. I thought I might write a story about a wonderful vacation in Hawaii.

But I got a different bag, with something I couldn’t identify by feel. Hmmm, what to do next…

Let’s try a CT-Scan. Fill the bag with contrast.  Lay it down and slide it in and out of a machine that looks like a giant donut.

Click, click. Breathe. Hold it. Breathe. Hold it. Click, click.

Sorry bag, the pictures show that it’s cancer.

Oh no! Now what do we do?

Surgery! Slice the bag down the middle. Take the damn thing out. When you’re done, staple the bag back together.

Oh this thing is ugly. Can we learn anything more about it? Sure…Slice it up. Send samples to the lab. The report comes back: its OVARIAN cancer. OH NO, everyone says that’s a bad one!!!!

Did we get the whole thing out? Leave any pieces inside? What if there are some crumbs that didn’t get out?  How do we get rid of those?

Chemotherapy! That should take care of it. Pour some poison in the bag.  What’s that? The poison burned a hole in the bottom. Anybody got any tape?

Oh by the way, even if this works for now, this cancer could come back. We might have to do this all over again…and again…and again…

This bag is a mess. I wish I had gotten a different one, maybe one with some candy in it, or a brownie.

You know what, though? This bag is stronger than I thought. Even with the cancer, and the poison, and the staples and tape, this bag can carry a lot of stuff. Don’t worry, bag. If that thing gets too heavy for you, we’ll bring in reinforcements. Wrap you in a blanket. Make you comfy cozy. Sit with you. Don’t be afraid.Unknown

 

Thank you, Bev, for your clear way of looking at our lives. Dont be afraid. love always, marcy

Philly Trek # 10, Treatment # 6

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October’s trek to Philly was hard, as I feared it might be. My initial treatment in this trial back in early June 2013 had been my most challenging and now I was returning after a 55-day break. My body might just resist fresh toxins being introduced with a loud “Hell No!”

I am now in the maintenance phase. I get the same chemo cocktail, at the same dose followed a day later by the same vaccines but now on a four-week schedule versus every three weeks. This sequence happens for three months and then I get tested to ensure there is no disease progression requiring redirection into Phase Two. I hope to do this maintenance phase for at least the nine months for which we have the needed material (my tumor to mix with my dendritic cells). But I also hope the next eight months are easier!

My flights presented some sleep challenges – I arrived at 2 a.m. I awoke again at 7 a.m., very little sleep for this delicate unit. The chemo infusion was full of delays. I returned back to my borrowed condo, crawling into bed at 7 p.m. feeling tired and off. I awoke at midnight to blinding head pain, stumbled to the bathroom and preceded to vomit for the next twelve relentless hours.

The Philadelphia Chamber of Commerce, no doubt, was glad when I finally left town. My walk through downtown for the next day’s treatment included stops for further retching. I like to imagine I cast an elegant figure in my red boots, stylish skirt, tucked behind a well-placed Canada Dry delivery truck, sitting on a planter wall, leaning over as if fascinated by some plant discovery quietly voiding my quite empty stomach. I didn’t linger to ask. Once semi-stable, I continued towards my final treatments of this visit.

The vaccines were a piece of cake, thank you. I felt too lousy to exert extra energy to tense up in anticipation of the needle’s journey. When I was officially done, the team decided to infuse me with saline to replenish my fluids making the long flights home less burdensome to my depleted system. Since I was all about sitting anywhere, another shift in a chemo lounge chair seemed most divine.

Trek number ten ended with me home in my own yummy bed by the early hours of the next day. It was all just fine. But no photos or extras for this post.

The First Vaccine Treatment

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The Philly Chronicles – Trek Four, Part B – The First Treatment

The terrain of hope is rocky. My excitement to start the treatment phase sustained me through an uneventful flight from Oregon to Philadelphia. I went from plane to train to the hospital campus to meet an incoming candidate for dinner. Her medical intake had started that day at 9 a.m., making our date for 5:30 seem reasonable. She emailed a series of apologetic notes of delay finally being released from her day of screening tests at 6:15. I recognized her easily by the bandage showing where she had last been punctured. A shared meal of falafel from one of the many food carts was delightful as we exchanged information, motivations and snippets of life stories – cancer serving as the frame.

We bid goodnight and I began my two-mile walk towards my housing with regrettably over packed luggage. Hip and knee pain had me whispering ‘ouch’ with every step. The walk is wonderful, though. The first quarter crosses the smaller of the two rivers that encases downtown Philly. While crossing over the Schuylkill and the expanse of expressways paralleling the river there is an amazing view of down town, a striking skyline. At dusk there is a line up of folks taking photos. The next stretch is dense city, mixed residential and commerce, the standard three stories allowing peaks of the skyline on the left.skyline

The following 7 blocks are not too exciting but then the street life starts accelerating. It is not a boring walk. Public art is everywhere. You can walk the same city block many times finding new things to admire between people watching, architecture and art. Murals dominate. As a quilter I am quick to note that the majority of quilts and murals are, frankly, not too exciting. In Philly I have yet to see a mural that has not met the mark for art. They tend to be three stories high and broad and from what I gather the Philly mural project has engaged a long-term team of artists to guide the community process for each site. The commitment to art and storytelling fuses brightly in Philadelphia. mural

In no time, I am at my own structure, juggling luggage, keys, and memory to get in the door, up the three flights and then, ‘Hello, roomie – I’m back!!!!”

June 5, 2013: The next morning I was to report in at 10 a.m. I was reluctant to end my long night of sleep – the bed felt too good. Twenty minutes before departure I got up forfeiting food shopping in favor of a quick shower. I should be done early enough to meet food needs. The walk was slow – my aching joints create a pacing that I am still not used to. Nonetheless, I arrived on time.

My handler was there by 10:05. The screening vial of blood was in motion by 10:15 but that would be the last thing on time for the day. Things started going awry. The person that normally did the physicals while patients were being prepped for the infusion was off. I needed to abandon my chemo post and relocate for the doctor. The doctor was busy. I was set in a typically dour examination room to wait and wait I did. After 15 minutes I opened the door to mitigate the stress of the confined space. After 30 minutes time started passing dramatically more slowly, then 45 minutes, then 60 minutes – tension settled in. I was now taking a roller-coaster plunge into the darker side of hope – despair. Why was I here? What life was this? I distracted myself by listing all the remaining things that could go wrong that day sidelining chemo, putting the scripted protocol off kilter and exiting me before even starting this foolish Phase One path.

The charm of the arriving doctor evened things out some. The exam was done in minutes, I was cleared for chemo and a new nurse sent me back to the chemo-waiting lounge. Like I knew where that was in this inner maze of the building. I stumbled back, unraveling. It was now past noon and it was clear that these accumulating delays meant that I needed to find food before I was strapped into my chair for god knows how many hours. I also needed to breathe a moment of fresh air of the delightful day outside if I was to regain calm.

I got a small bite to eat in the sunny warmth then reported back in only to be told, “sorry, there are computer problems preventing your clearance for chemo from showing up.” I convinced them to call me when the problem was resolved and ran outside. I found a patio that allowed me to stay close to my bank of elevators but enjoy a sense of normalcy. It would be ok, I kept assuring myself.

The call came clearing me and at 2:00 I was being seated in my chemo room. The next struggle presented itself. One of my infused drugs, a drug I hate and have had for over a year, would need to be infused over 90 minutes instead of 30 because they insisted on treating me as if I had never had it before. That was absurd. It was getting late. I challenged the edict requiring phone calls. Meanwhile the nurses were being sprightly in hearing me beg them to get my port accessed, start the pre-meds and leave me to the negotiations.

The nurses were wonderful and did their best to zip my infusions through but the mandated avistan drip speed from 30 to 90 minutes held firm because of the stupid research protocol. I hate rules based on weak footing. Someone showed a lack of imagination when crafting that section, and I lose another 60 minutes to hospital life. It adds up.

But protocols, once written, cannot be changed with ease. A research protocol risks termination with every change. I got to fume at what I experienced, which is genuinely frustrating, knowing when calmer that it is just the architecture of checks and balances within research. It is what you sign on to. Hope and frustration!

Infusion done, released, I delight at the smells of a tree in bloom. I breathe in life. Outside I am content, confined I agitate. Computer systems went down, the wrong people had a day off and the relentless rules that indicate you are the property of research combined to make my first infusion an all day affair. It was a beautiful day just as it was beautiful the day I flew. It’s summer, time to be outside but not for this research subject. I am relegated to the various benches for the permanently waiting.

Vaccine day – June 6, 2013: I trudged back to the research building. This day was cool and gray. Without the usual cushion of steroids infused with yesterday’s chemo, I felt gray as well. (Steroids are barred since they suppress the immune system and this trial is about building the patient up.) I had not experienced this level of exhaustion for quite a long time. Dressing that morning required breaks lying down.

The vaccines were a big moment, I had worked for 20 months to get to this point but having emotions was beyond me. I was too tired. I arrived to my waiting area the required 30 minutes early. The Paris Open on TV held my attention as I also tracked the room. Not many people, in fact just one other woman roughly my age quietly speaking with a friend. Hmmm. I peaked to see if she had the same envelope I did but nothing showed. The doctor came out saying, “Good, you are both here.” He graciously came over to me, the vaccine first-timer, to shake hands and assure me this would be easy. Then he took time with the other woman. As soon as he hurried out “to get things started,” we exchanged names and emails before we were whisked to our different rooms. She was the patient enrolled immediately prior to me, the second in our cohort. There was little time for other details as a parade was starting.

At the head was the ever-cheery Dr Tanyi, then support staff with coolers, clipboards, then rolling machines. We were told to get in line as we walked down a hall to a new section of rooms. The other woman urged me to go first knowing that first time jitters would only settle down once it was done. I was ushered into a tiny room now filled with parade participants plus some new folks. I didn’t know what to do until someone indicated that I should get in the bed. A bed, I hadn’t expected that. Given my exhaustion the sight was most welcome. I was shaking hands with old and new staff while trying to maintain some dignity as they all formed a tight, tight, tight semi-circle around me. (Think room as small as an elevator now including a bed, equipment and 8 people.) My lead nurse was holding a large syringe in the air. I make it my business never to look at needles but in this tiny room it loomed large. The other one must still be in the cooler.

I lay down, draped with a blanket as I scooted my skirt down. The doctor kept patting me saying, “This will be just fine, you’ll see” then quickly turning to a peer, narrating the process. She was being trained in, it turned out, to take over while Dr Tanyi was gone the next month. Damn, I don’t want her to be trained in on me! My undies were protected with napkins as goop was placed on my inner thighs. The ultrasound beeped to my right as we all waited for the radiologist to arrive. It was a long five minutes of trying to avoid looking at a needle held high – of trying to preside with grace as the centerpiece of the room. Radiologist in place, I fixated on the ultrasound screen wondering if we might find a baby but the search was for lymph nodes. “Ah”, I heard but I saw little amid the gray striated screen. When would the needle go in? Ouch, it was going in and that I could see on the screen. It was a slow process of everyone agreeing that it truly was in the lymph node and then that vaccination was done. Next side and it was now the doctor-in-trainings turn. I would have loved a sound bubble rather than hearing the list of do’s and don’ts as a much, much slower process started on my right. Was she in the node – were they really going to discuss this endlessly with the needle in me? Finally, the slightly more painful vaccination on the right was done.

The parade director put the sides up on my bed, and wheeled me from the vaccine room into another room for observation over the next hour. At 2:30, I was dismissed from the bed and faced five hours of walking around counting down until time to return for a blood draw. The weather had shifted with tropical storm Andrea arriving. I had a list of places to explore but my bag was heavy and I wanted to lie down. The University of Pennsylvania is a beautiful campus but there was no place comfortable for my post-chemo body for more than a few minutes. The temperature kept dropping. The clouds grew more ominous. I wanted a bed.

Eventually I got the 7:10 pm (protocol forgot to allow a window) blood draw and started my slog home in a drizzle wishing I hadn’t been so confident this morning that it wouldn’t rain. Home at 8, too tired to eat I went straight to bed sleeping until 9:30 the next morning. I awoke feeling better. In fact, my hip pain of April and May seemed gone. I was still tired with nausea but within acceptable limits. I relaxed with my roommate, packed then headed out for the final blood draw at 1:10 p.m. exactly. With all my luggage and tempestuous rains starting outdoors I grabbed the train to the airport. It was a direct flight home escaping just before the storm hit full force, arriving into the arms and care of my husband. Tired, nauseous but miraculously clear of hip pain – a benefit it seemed of the cytoxan chemo that, apparently, can be used for arthritis. My first treatment trek was done.

The Philly Chronicles – Trek Four, Part A

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Monday (6.3.2013) dawned gray in Portland rather then kicking off the predicted suite of sunny days. The forecast had been revised overnight. I have yet to give up trying to control the weather, a habit I developed upon moving to the rainy part of the Pacific Northwest. The rain is fine, the gray can be gorgeous but my disposition is for sunny and warm – I never tire of it.

May weather was especially harsh to accept after a remarkably dry and blue-sky winter and spring. This May ended up being the third wettest on record. And cold. The nation suffered big weather turmoil while we just coped with the grumpiness of winter weather in spring. So yes, I counted down to my one sunny Oregon day before bidding goodbye to fly back to Philadelphia – more planes, airports and hospitals in store for me. The sun did sneak out albeit a few hours late. I thrilled in its arrival.

Between chores outside I toured the different nooks that make up our small urban homestead. I love to greet the flowers, their beauty deserving a small shout out. I am less outgoing with the vegetables and fruits, the exception being our young apple trees promising an actual crop this year. We moved to the city when I got my stage iv cancer diagnosis three years prior, leaving behind our dream farmstead with my flock of ducks and the ever expanding orchards and growing beds my husband fed us from. We planned to grow old there. We lost several dreams with the arrival of cancer.

I never really went home post diagnosis. Dear friends literally met us at the emergency room where doctors were puzzling out my collapsed lung. It would take a week for diagnosis but after removing liters of fluid from my chest, they whispered in the hall to these friends that, ‘there was never a good explanation for a collapsed lung.” We stayed with these friends that rocky April filled with all hours of trips to emergency rooms and then the pronouncement of terminal cancer. We stayed with them in an ad hoc guest room for the duration of front-line treatment. It insured care and laughter during a bewildering few months for my husband and me.

With the cancer diagnosis I committed to staying strong and for me that meant easy (aka biking) access to medical and complimentary care and, frankly, the busyness that a city offers. Depression seemed a secondary threat. It was time to say goodbye to the greater isolation and distances of country living.

Our new home, small and perfect with a decent allocation of land, steadily took on the shape of our revised dreams. Two vegetable beds were squeezed into the side yard, then three on the sidewalk meridian, two community plots acquired nearby and the expansion continues, a source of shared delight. I know every square foot of it very well.

Monday, soaking up the sun in preparation for my flight, I discovered a hidden treat. We had pruned out some trees blocking the southern sky last winter, now rewarding the effort was the most subtle and stunning iris blooming where a few trillium lounged months back. I took a photo to take with me on my travels.photo

I start this trek (Tuesday – 6.4.2013) with excitement. Finally, I begin the multi-day process of treatment in this phase one trial. A chemo cocktail of cytoxan and avistan day one, vaccines to the groin day two, and for this first cycle – blood draws every 12 hours for an additional day. Then home where I hope the sun and the iris will still be holding court.

I travel with Roxanne Cousins. She died earlier this year at age 40 leaving a young son to do his best with memories. Roxanne and I both worked hard to qualify for this trial, sharing notes and encouragement along the way. After surgery she was told that she didn’t have enough volume to meet the damn criteria. She was determined to try again; to get in this trial; to buy some more time with her loved ones. The cancer claimed her before another surgery could happen. I pledged to keep her spirit with me in a trial that is too early on to promise miracles but those of us with ovarian cancer just seek time extenders.

The Sunday N.Y.Times (6.2.2103) covered the interesting challenge of HIV patients in the U.S. once short tracked for death while often in their 20s and 30s, the miracle arrival of their own cocktail and the problems they now face of aging after decades on treatment. They featured one such man who was extremely close to death when the call came about ‘miracle pills.’ Within weeks he was gaining weight and mobility. Decades later, he lives. What a concept. Imagining that process occupied my mind. Of course, he couldn’t know it was a miracle at the time but must have considered it as a weak possibility. How long did it take him to accept this drastic change of fate? Could he ever revel? Does it matter?

What terminally ill person has not awaited a clarifying call in the months after diagnosis offering a reprieve? “So sorry, but you really have this other more benign calamity to contend with.” I met a woman who got such a call – it only changed her from a stage 3c to 2b but in the terrain of hope that is huge. With this trial I enter the terrain of hope.

Part B to follow shortly…

The Philly Chronicles – Trek Three

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I have now completed 3 visits to Philly – all equal parts pleasant and hard. It is crazy to commute cross-country for medical care. I *hope* that my next five visits to Philly, which all involve predictable treatment, will be easier then the prep visits filled with the uncertainty of passing criteria. But these are the delusions with which I pattern my life – not that such optimism does much harm.

Anyway, after three cross-country trips in a month and a half, the clinical trial physical prep work is done! My next visit the first week of June is for treatment – travel the 4th (sigh), chemo the 5th and vaccines the 6th. The first round I stay an extra 24 hours for observational blood work meaning that I travel home the night of the 7th. I have found April and May overwhelming with the travel tipping the scale.

I do feel relief to have to prep work done. The ‘dreaded apheresis’ was completed May 22nd at 2:30 pm. They only allow you a specific amount of time on the machine. I wanted to stay on longer to reach the high end of the goal of having had 15 liters of blood processed but the cut off time was marked with the arrival of the research staff to carry off the tiny bag of dendritic cells that go right to the lab for processing. Interestingly, I have since learned that the average female has 4.7 liters of blood in their body so the time is all circulating the same liters of blood to extract, extract, extract. My body generously allowed 13 liters to circulate, three more then the ten minimum needed. (As you can see, I do most research after undergoing the procedures but understanding a central line, I think I will avoid.)

Getting the central line was no fun. I relied on the information they provided that said it would be quick and uncomfortable versus painful. It is quick if you don’t count the serious prep time in the surgical outpatient wing and actual operating room. In some Merriam Webster dictionary way it might qualify as uncomfortable but in the real world of being lashed down to an operating table 2000 miles from home, it is a way creepy experience made more disconcerting when they need to abandon their initial plan of ‘vein preservation’ (a heartening concept) and reverse the operating room equipment to accommodate the ultrasound showing that there wasn’t any vein to preserve on my right side.

Two realities made the procedure harder. My email went down for twenty hours. Worse yet, I had grabbed the wrong charger so despite keeping my equipment off to maximize battery life, I had no juice by the morning of the procedure. My sister-in-law, driving 4 hours each way from upstate NY to provide support was bringing me a cord but we first had to find each other.

The plan had been to meet at the Apheresis Unit in the hospital to spare Peggy the chaos of tracking my complex morning moves through different buildings. But, of course, I needed her support at surgery. She figured that out (Peggy is incredibly competent and cheerful!) but she was only able to snag me as I exited with my central line installed. Within 30 seconds we were laughing and on our way to the waiting Apheresis Unit. (I could bore you with how to registration gal ‘lost’ my paperwork thus delaying the installation of the central line and increasing my tension but….you can imagine.)

Everything at the Apheresis Unit was easy. They know their stuff. The research team and they had interfaced perfectly. They have a very high staff to patient ratio. I had spent the week prior being perfect in what I put in my body. Peggy showed up like a salesperson for naked juices – one in every color, which I dutifully drank down. They opted (based on labs?) to infuse throughout different extras like calcium rather then waiting for possible mini-crisis’s. It was pleasant outside of the modest discomfort when talking and swallowing. I tried not to resent the window with the great view of downtown Philly in the sunshine being blocked by my bed. (Why do they do that?)

They informed me that I was extruding the perfect color of cells so that cheered me on. They knew I was flying out that night and did a lot of additional care to assure that would be fine. (Although it was not entirely confidence inducing when they packed a little post-care bag equipping me to staunch any blood flows and when I asked what I should do if I couldn’t stop the bleeding, they responded, “go to your nearest emergency room with your paperwork.” Hmmm….)

A mini-drama started two hours after boarding the plane. The weather in philly was wonderfully hot, my clothes were slight and my bandage was HUGE and mandated. I walk with a cane right now and always use a facemask in airports and planes as advised. My hat sports the cancer sucks button. I realized I looked worrisome both coming and going, as airport personnel stopped to ask if they ‘could help?’, I was escorted to the disabled line and wheelchairs were waiting for me at the close of every flight (I refused them but I did avail myself of the little trolleys for the first time.) So, I entered my first leg plane, as an obvious high need person. After the close of the first hour and a half on the tarmac, knowing I had a mere 45 minutes layover in Phoenix, I rang the call button, another first. The attendant came and I explained that I was a cancer patient returning from treatment and that I had a medical team in Philly and one in Portland but none in Phoenix and I did not want to spend the night in the Phoenix airport. They were vary accommodating but were clear on their limitations and gave me five minutes to mull if I wanted to deplane so I would be with one medical team. I was overwhelmed and knew that a. an off loaded passenger requires the re-inspection of all stored bags, a multi-hour delay and b. getting back to my host lodging was a decent undertaking for an exhausted person not allowed to carry anything for 24 hours and c. I wanted to get home. My seatmate, a man of roughly my age volunteered softly spoken council that would make any feminist proud. The flight crew was strong on encouraging if I had any discomfort I should deplane. I couldn’t have had better support. In the end, I decided to gamble that enough people now had my back that I would stay the course. The flight crew kept me posted, moved me to first class for the landing so I would be the first off, alerted the Portland flight and whisked me to the gate. The second plane landed only 10 minutes late. I was in bed with Mike at 3 am, 6 am philly time. What an amazing 24 hours in the pursuit of survival.

And all that night my sack of dendritic cells were in the lab growing into the marcy vaccine.

It is fun getting to know a new city. It helps that my guest accommodations are wonderfully situated for pretending I am on vacation. The condo is located on South Street near 12th – a central, fun, big city neighborhood. It is a row house befitting the city style and we are on the top, thus third floor. The terrace looks down on the street hubbub and this last trip, with bursitis limiting my movement, I adored leaning out over the block and creating storylines for the strangers I am getting to know through persistent observation. The extended family of three plus generations that runs the convenience store and seems to preside over the block – who parks where and when, with ample home cooked meals seeming to be the reward for following their rules. A nail salon and the day care center provide intermittent distractions that I am piecing together.

The lovely home setting complete with a warm host compliments the rigors of travel. Cross-country medical care may be nuts but amenities like these lull me into the pretense of being on vacation and, of course, you travel for that.

Onwards to more vacation the first week of June!

Warmly, marcy

p.s. snippets: I am finally noticing an abatement of my chemo induced shortness of breathe – yeah! I also greet the arrival of new hair filling in my scraggily scalp just in time for a possible new round of thinning as I start a new chemo drug with that side effect June 5th. I intend to return to full mobility in the next month or so. It’s been demoralizing to watch my chemo induced hip arthritis aggravate into acute bursitis but it too can be managed.

To Philly and Back!

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I got a taste of my possible new normal last week and it wasn’t bad. In fact, it felt a lot like my old normal, a life I did quite love. Facing mortality I am determined to enjoy whatever each day brings, but that attitude can belie a deeper truth of who I truly am and the life I would like to live. I like being engaged, busy, in the thick of things. I have adapted well to being ‘in the thick’ of life on the infusion ward and the acupuncture clinic but there is a bit of guise in that.The week, starting with last Saturday, March 30th, was BUSY. I knew it would be, so trying to ration my energy, I had even asked my dearest friend not to fly out for my birthday party (sigh) fearing a visit on top of big events would be too much. Even with Stephanie not joining us from Minneapolis, it was quite the gathering. People drove in from many directions to create such a mass that few individual conversations happened but oh what a mass of energy and fun – what you would hope for at a dance party.

The space was lovely, the weather beyond perfect, the host team award worthy and a cake that I never got to sample perhaps in an inadvertent boycott of the cutting into such a thing of beauty. The cake was massive and covered with the ‘best of’ photos of yours truly collaged artistically together.

I stayed on the dance floor and despite my fears that my lung capacity might reduce my ability to boogie, I did not return once to the designated ‘marcy rest throne’. It was wonderful dancing with so many dear friends. At the height of the evening some loud bangs erupted. Oops, the accumulated sound had detonated a few wine glasses. It was time to start winding down.

I had a day of rest before flying off to New York City. Two big east coast events had been foisted together without much ease. The first was a two-day conversation closing out a two-year thinking/action project on engaging the white working class in progressive identity. ROP was among four other groups to feature their work. It was a typical such gathering – 12 hour days, an expectation of your mind always being on.

A special needs person such as I is theoretically accommodated but there is only one size fits all participation. Sit up, stay engaged at the table and maybe, if you are determined, manage 8 hours of sleep. Day one, I functioned. Day two, I functioned. Day three, I functioned and I stopped holding my breath waiting for a glitch as my body rebelled. For five full days I functioned just like any other member of the working world. And I loved it. Luckily, I was able to manage quality food and exercise (there was no day that I walked less than five miles – god bless Manhattan.)

The formal meeting ended. I switched to family housing, slept a full 10 hours and had enormous support in the logistics of the second adventure. I awoke at a leisurely pace on Thursday to walk the 3 miles to Penn Station, train to Philly and exit the train to find the one and only Holly Pruett waiting at the top of the escalators prepared to snap a photo to document this moment – after 18 months we were going to walk to University of Pennsylvania in Philly for a medical appointment. We were finally here.

Holly apologized for her ‘wardrobe malfunction’ but I knew she was the perfectly attired companion for my assignment today to prove to UPenn that I am in ideal health. Holly looked young, fashionable and vital, loaning a definite edge to my efforts. She had clearly spent her proceeding 10 hours in Philly preparing to be a tour guide as we walked the mile from the train station to UPenn. If this was to be my new home, I should start learning about it. (Philly is the 5th largest US city, has five major sports teams and a superstitious relationship with where William Penn’s statue resides in the relative height of downtown Philly. There is more, much more, but we hope to have time to share the delights of Philly.)

In no time we were at the stunningly new, open design of the research wing, signed in and waiting for our appointment to start. Both Holly and I sighed with enormous relief when they acted like “yes, we are expecting you.” All the intake folks were like “really, you are traveling here from Oregon?” YES! WE ARE!!!!!!

The person we have negotiated with for 18 months was there in the flesh and blood. Everything started with hugs. The repeating of information, often having a flash of panic, ‘wait, could sharing this disqualify me?’ Meeting the doctor in charge, Dr Tanyi, who like my new OHSU doctor, is both brilliant and communicating to me through a Slavic accent that I have yet to master. With great energy he reviewed the theory behind the TWO (who knew) clinical trials that I was being screened for. Between needing to remind myself ‘I am truly sitting here’ and the accent, even with my great familiarity with the trial theory I know I missed details.

After the physical exam, he declared me an ‘optimal candidate’, posed for a group photo and left us to meet the project lead and work out the details like the dates for my formal signing of paperwork (May 8th), apheresis/dialysis (May 22nd) and the first vaccines over the three days of June 4th, 5th and 6th with subsequent vaccines every three weeks thereafter until I decide to stop, we run out of my tumor or the cancer grows.

I arrived home after midnight last night. I am thrilled to be home and ever hopeful that by choosing to loan my body to the frontier of medical research forward steps will be made in taming ovarian cancer and extending my own life. Formal signing of paperwork will not happen until May 8th but there is every reason to belief that, courtesy of many, I will be enrolled in the Phase One, cohort four arm of this trial. Let’s keep our fingers crossed for just a little longer.

What a week! Thank you all for the great send off.

love, marcy

 

Travels & Work Despite Metastasized Cancer

Standard

I have been quite remiss in my postings but as some have noted, less news can be imagined as good/neutral news. Health wise I hope still to be stable in remission. My last blood test in April was my first upward incline of numbers, very scary for what it could portend but too isolated to indicate much yet. I chose not to get another test prior to departing for a month reasoning the most obvious result would be another uptick in numbers walking me out of remission and the best results just kept me waiting for the next test and the test after that eg my new status quo. Cancer vacations are fun and all the more so when combined with a real vacation. I opted for the cancer vacation.

Back in late October 2010 I received an email you never anticipate. It was simple, stating “We’ve begun planning the Open Society Fellowship Reunion, which will take place in Budapest and Szilvasvarad, Hungary from June 7-11, 2011. At this point in time, we’d like to ask you to confirm your participation in the event. “ A part of my life that I had tossed aside when diagnosed was further travel. Travel, especially work travel, is inherently stressful for the body, the correlation between stress and ovarian cancer is more substantiated than for other forms of cancer and it was an obvious item to delete. I decided that I would not travel again. That stayed my thinking norm until this email popped up. My immediate response to the email was ‘Hell yes, I am going!’ And then my travel ban was on weak footing. Thus, in January I traveled to NYC for a rural convening. I returned home to plan a much more ambitious trek that was bookended by two political commitments – the long planned convening of front line organizers to Map the Right up in the Adirondacks and my Hungarian visit to the castle. Wanting to avoid the radiation and stress of back and forth plane travel, I needed to be gone for a month. And thus began the planning for a 32 day journey.

I just returned home late last night from these adventures. I cannot recall a single dull or sour moment. My body, after some initial drama, settled into the adventures. I was able to practice decent patterns although my diet rules dissipated fast. Blue Mountain Center, the retreat site in the Adirondacks that was stop one, has phenomenal food all healthy but they seem not to have gotten any bulletins regarding sugar. Not only did every meal offer dessert but they have clear glass cookie jars offering different home made cookies at all times….they have no one minding the cookie jars which I took total advantage of! And once my sweet tooth was activated little was safe.

My final two and a half weeks were in Hungary where one traveler quipped ‘you could well experience a soviet bloc.’ It’s a heavy diet laden with meats and sweets. Salads are true work to find. My post surgery body is at high risk for bowel obstructions leaving me pretty nervous but suffice it to say, I survived but was eager to return to my magic vegiemix for blended vegetable drinks to launch every new day starting with this morning!

It was lovely being gone and it is lovely being home. Seated here writing I look out on our lush yard, have already walked to get fresh produce and hope to walk over to a friend’s house later today to meet their newly born baby. It’s not been 12 hours and already Kaiser has summoned me for new appointments and tests. The full cancer vacation may be over but I hope to maintain a new balance between my dire diagnosis/prognosis and the lightness and beauty of the world that I get to enjoy.

When I first agreed to these travels I viewed them almost as a ‘goodbye tour’ which was how I coped with my new world order – everything was about closure. As I travelled, though, my commitment to closure faded. I awoke each day and found hours passed before I ‘remembered’ that I was on borrowed time. I intend to stay grateful for every moment I have but my travels returned me to the living as I made new commitments, planned for a full future and hope, as we all do, for the best of luck and medical care to keep me alive.

I would share more details of the travel but for now, as a woman with many commitments, I had best get back to work.

With love, marcy