Tag Archives: apheresis

Home Again

Standard

After 12 full days on the road this September, I am quite happy to be home as an early Fall storm gusts outside. The travels were bookended by two appointments at UPenn.  My second and final apheresis pumped out then returned a full 15 liters of blood through the jugular vein in the neck.

Aphereis Blood Necklace!

Aphereis Blood Necklace!

A Dendritic Cell

A Dendritic Cell

This process allowed extraction of my now theoretically educated-via-vaccines dendritic cells. I did well but had a lot of vertigo over the next week as my body recovered from such dense draining. The dendritic cells were hurried off to the lab for storage until I enter the Phase Two section of this trial.

And I hurried off to vacation. First stop my brother’s rural home in upstate NY in the small town of Freeville outside of Ithaca. There I got to catch up with family, enjoy some stunning weather and a few kangaroos and emus that are part of my brother’s ever creative interests.

Bro & Kangaroo

Bro & Kangaroo

photoAfter that lovely time, I was dropped off at a retreat site in the Adirondacks. We were greeted with the edict to ‘turn off your cell phones’ as we were now in a place of contained and sustained calm to allow the artists in residence to complete their projects.

Mike and I were honored to get a short stay with the fourteen others who were there for a month. Projects ranged from fictionalized looks at current day struggles in Zimbabwe and of veterans, to documentary films on things the public needs much more information on. Artists were operating in 4 different studios.  A composer was winnowing down and then rebuilding an opera capturing the true story of a 13-year-old Tibetan nun made prisoner after protesting for her countries liberation. This project particularly moved me for the depth of her trials, her happy current life and the reminder that suffering can be just fine. Several community organizers were a delightful addition not only to our own project but also to the fun as between us we had many shared connections to visit about.photo

In our week there formal readings and presentations from six participants took place. Shared meals, time on the dock and walks allowed ample time for stimulating conversation about the work of all participants.

I opted in to the morning tai chi and quite wish I could still pop out of bed and meet on the dock for the next round of cloud hands.photo

We feared visiting too early for the turning of leaves but the Adirondacks border Canada and had had plenty of cold to start the process – vivid reds, yellows and the full array of oranges, greens and browns unfurled a bit more each day. Breathtaking views in all directions. We arrived to the sound of a loon and the haunting cry stayed a constant for our time there.

Our departure was rude. We left at 4 am with a seven-hour drive down to Philly courtesy of my sister-in-law. Immediately, it was the chaos of getting the right tests in the right order. Despite being determined for the labs to be complete in one poke, I had to endure a second needle to the chest with seven more vials to fill. Grrr. Cat scans are never pleasant and UPenn requires the yucky double contrast for maximum imaging. Done, we had the official end-of-study (not really) visit with my charming doctor. Lacking test results we speculated on the various options, projecting that I would be tracked into the maintenance program allowing me to use up my remaining doses of vaccine (waste not!) but at a more leisurely travel pace of chemo then vaccines once a month versus every 2 ½ weeks. The 10 cross-country treks since this started in April of 2013 have been very hard on my quite run down body. On the other hand, this trial seems to be extending my life.

The Philly Chronicles – Trek Three

Standard

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.