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No better way to start the day! |
Friday, March 15, 2013
Mixed Results
Friday, February 8, 2013
Regaining Stability
Friday, January 11, 2013
Cutting Our Losses
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MLN4924 chemical structure |
Wednesday, May 25, 2011
Partial Remission

Friday, May 20, 2011
Back to Big Texas
Wednesday, May 18, 2011
Close Call
Saturday, April 30, 2011
Blur
I'm disappointed that I did not write more from Houston, but I was so incredibly busy or far too tired to get to it. I know that sounds crazy, but I couldn't get myself to do it. I do have many, many story nuggets that I plan to get to writing now that I can breathe a little bit. But for now I'll do a broad-brush review to get up to speed.


Once I accepted that my parents weren't there to sight see in Houston, but rather to just be there for me, I realized that it was okay for me to nap or not want to go out and explore. I am so fortunate to have parents and a husband that care about me so much that they'll sacrifice everything to do what I want to do. Sometimes that made me lash out because I want them to do what they want to do. It's a difficult balance of being extremely grateful and also not wanting to be a burden to anyone. I constantly try to think about what it would be like to be in my caregivers’ shoes and I'd want to be there right with them as well – even if they were just a blob on the couch as I was much of the time.
My mom gave me fantastic back rubs and introduced me to Bananagrams – I don't know what took me so long to discover that amazing game! We played many rounds of that and hung out in my parents' apartment watching silly TV once I finally let my guard down some. My parents rented a car, so my Dad became my chauffeur around Houston, which was helpful to run errands and to get places more easily as my energy had been completely zapped. This allowed us to check out the Houston Museum of Natural Science – including its awe-inspiring butterfly garden, the Houston Museum of Fine Arts' Sculpture Garden, the Japanese Garden in Hermann Park and a scrumptious downtown Farmers' Market. The city really does have so much to offer, much of it right up my alley.
We did get in a trip to Galveston, TX, on the shores of the Gulf of Mexico as well. It is only a short hour-long drive from Houston – Papa behind the wheel. I loved that place. I could have rolled around in the waves like a pig in shit all day long. The ocean water was the perfect temperature and the waves were strong and rolling. The four of us enjoyed some Gulf seafood and took a Duck Boat tour around the island and right into the bayside water as we learned about the history and goings on of this very unique island.
Despite the incredible wind, Craig and I plopped on the flour-fine sand of the beach while my parents did some further exploring. I spent most of the time in the water by myself diving in and out of the crashing waves. The salt water helped to clear my blocked nose and ears and the pressure of the wave undulations felt so good on my back – Mother Nature’s massage therapy.
Easter was spent mostly on the couch or the bed in our apartment. The Easter Bunny did find us there in the form of a bag of candy left outside our door and a beautiful bouquet of flowers that came from my Gramma and uncle back home. Plus, the adorable cards that arrived for the holiday and otherwise. After much internal (and external) debate, we all did make it out for Easter dinner in Rice Village – a Houston neighborhood that I came to love, which is adjacent to Rice University. We ate at a fabulous restaurant called Benjy's. The food was so good that I actually ate half of it and thoroughly enjoyed seconds for lunch the next day.
I love to travel and I love to see new places but there is a difference between being on a chosen vacation and being in a place far from home because you have to be there for treatment. We made the most of every moment that we could, but we missed the comforts of home badly, especially at night when I was remiss of distractions. I missed my Sammy dog tremendously. I did a lot of crying and a lot of yelling. I had many breakdowns and I know that this is because I didn't have my normal coping mechanisms with me at my disposal.
It's at times like this past month that I realize the things that really matter to me in my life. I missed my family and friends. I missed my alone time. It bothered me tremendously to not have nature and woods around me. It bothered me that I couldn't write and that I couldn't go to yoga class. I missed walking and hiking and the Farmington River. I missed having the basic necessities to cook our own healthy meals. I missed recycling. I missed tasty water out of the faucet. I missed quiet. I missed my pillow and bed.
After coming back from San Antonio, exactly as predicted by my doctor and nurse, all of the crappiness set in during week three. I got incredible backaches and tenderness and the fatigue became extreme. I had only a few hours of energy in me each day before I had to take a nap. The record heat and humidity in Houston did not help. Heat in the 90s, humidity 95% some days. I love, love, love the sun and warm weather, but the humidity made my already reduced breathing more labored, and I found myself often in the sanctuary of our air conditioned apartment, which is very unlike me. But the extreme temperature was too much for my body to handle. This worked out okay though because both my parents and Craig run hot and I was actually on the same body thermometer as them for once.
Appetite has continued to be low and I’ve dropped weight. I’m working hard at getting food down, but it’s certainly a chore. I have constant dry mouth. With barely any saliva, it feels like I’m walking around with cotton balls stuffed in my mouth, which takes away the appeal of food. Certain areas of my tongue are also very sensitive to harsh tastes and make it difficult to eat. However, I’ve still avoided any full-blown mouth sores. My lips are another story, though. They are swollen and cracked and in the mornings, especially, I have Herpesesque growths on them that hurt like a mo’ fo’.
On top of the chemo side effects, I caught a cold something nasty, or it's allergies, no one knows. But in any case, it still hasn't quit. It came on with a sore throat in San Antonio, which left but settled into a very rumbly cough, plugged ears and drippy nose. My parents and Craig had to put up with a lot of coughing fits around them. I saw a nurse practitioner in the "fast track" team at MD Anderson, who after ruling out a virus with a sinus wash, kept me on the antibiotic and told me to treat it symptomatically. The symptoms are still persisting, but have gotten better with rest and my home environment.
The good news is that I made it through the entire month down there without ever needing blood products and I required only one shot of Neupogen. I got this really because I asked for it as I did not want to be off of my pills for any more than needed. The schedule has worked that I've had to take a break from the pills for 3-4 days every other week. I've been able to tolerate the other side effects enough to avoid longer breaks. However, the drugs knack for knocking my blood cell count down is really nothing that I have control over, so the Neup shot helped my white blood cells soar back up (in one day) to far surpass the required ANC level of 1.0.
On Tuesday I met with Dr. Younes and Amy again to go over my first month. They were both impressed with how well I did and said that I was able to keep more drugs down than expected. They are still really exploring how much is tolerable and suggested. There are only 23 people that have been on this combo drug study and only eight of them have Hodgkin Lymphoma. I’ve kept diligent track of the symptoms I’ve experienced in hopes that it’ll help them better asses this drug tolerance and efficacy.
The meeting with the doc was very lighthearted. Both my mom and Craig came with me and we had a lot of laughs with the medical team and they gave me the thumbs up to continue treatment back home and get my blood cell levels checked locally with Dr. Dailey at Hartford Hospital. I felt much more at ease meeting with them and hearing that I’m tolerating the drugs well. I tend to be very hard on myself and outside assurance that I’m doing okay is very helpful to me.
To make the travels back home to Connecticut even sweeter, we scored a ride with the nonprofit organization Corporate Angels Network. The charity sets up cancer patients and their caregivers with rides on corporate jets that have open seats on a given trip. We lucked out in that one was going from Houston to Jersey City. They even set us up with a Lincoln Town Car driver from Teteboro Airport right to our door in Tariffville. These were both donated services. The travel effort and financial burden it relieved were instrumental. The experience of traveling in sweet, comfortable rides with incredibly generous corporate execs wasn’t so bad either. They were kind and fun and so, so accommodating. We felt like royalty.
When we arrived home, we were met with balloon clusters and vases of bright flowers in every room of our house. There was a big, adorable “Welcome Home Craig and Karin” banner spread across our dining room table and our refrigerator was filled with all of the essentials. Our neighbors and their kids had been busy. Their incredible thoughtfulness brought huge smiles to our faces. Our smiles continued when our friend Melissa delivered Sammy back to us and we had a good cuddling/petting/tail wagging session. Then all three of us crashed into a sound sleep in our respective couch positions.
I haven’t been doing much besides sleeping since. I slept for 12 hours the night we got back, was up for a few, then back to bed until Craig got home from work. Thursday night was particularly rough. I woke up in the middle of the night with an intense headache. The pain was so bad that I stumbled out of bed and vomited my brains out. I hate, hate vomiting. This is only the third time I’ve thrown up in two years of treatment. I was barely even conscious and can’t believe that I made it to the toilet. Craig woke up to the noise and found me hugging the thing with my face down on the bowl.
I got back into bed with a cold compress on my head just in time for the 4 a.m. live coverage of The Royal Wedding, so at least that was a plus. The nausea and headaches persisted into the next day. As difficult as it was for me to do, I e-mailed my trial nurse to tell her what was happening and ask for a break over the weekend. I can tell without even checking that my counts are low as my energy level is so shot. She wrote back: “Absolutely.”
Basically, the ball is in my camp with this clinical trial and I need to listen to my body and speak up when things get to be too much. I know my body intimately and my medical team wants the best for me. We all want to give the drugs the greatest chance to work, but also don’t want to kill myself in the process. I’m hoping that on Monday I’ll be able to get back on the treatment regimen. Right now though, my body is telling me–in no shy terms–that it needs a break from the toxins and the travel and requires a ton of sleep. I am listening.
Some Houston Pix:
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Houston 2 |
Friday, April 15, 2011
Dodo
After three days off of my treatment pills I was called into the cancer clinic on Monday to check my blood cell levels to see if my bone marrow had been able to make the required cells on its own. If it did, I would start back up. If it didn’t, they’d shoot me up with a marrow stimulator.
The technicians in the blood draw area here cannot access the port in my chest. To do that I have to go to another floor to get the needle put into it then come back down to have them draw from it. Partly out of laziness and partly out of the desire to make my time in the clinic as short as possible I’ve been opting to deal with a needle in the arm vs. all the steps and extra waiting it takes to get my port accessed. Short-term pain, longer gain. From this point on, I’ll probably make the extra effort to actually utilize this third nipple for what it’s supposed to do, which is keep me from becoming a pin cushion.
To no surprise, they’ve had to do a lot of fishing in my vein to get around the scar tissue built up there from the ABVD treatments. This hurts. Like hell. Needles never bothered me but these days – after almost two years of near-weekly blood draws – I’ve become more needle shy. It’s like when I bring Sammy to the vet for a check up. As soon as she sniffs the place her fur spikes on end, she glues her body to my leg and trembles against it knowing that the shot to her hip is coming.
I stuck out my right arm and promptly looked away and breathed deeply as I read the wall full of Christian poems and Bible passages. After reading the Xeroxed copy of “What Cancer Can’t Do” for the third time I realized something was up. The technician was doing a lot of tisking and a lot of arm tapping looking for a “good” vein. These signs are never promising. She tied the rubber tunicate and told me to pump my fist.
“Here we go, sistah … little stick,” she said, shifting her heavy weight on her little stool with wheels. It wasn’t the initial stick that hurt. I can take pain. It was when the fishing began and her breathing got heavier than mine. She was wiggling that little sucker around in there like she was unsuccessfully trying to thread a needle. The needle was in my vein but no blood was coming out. Her manager must have seen the sweat on both of our faces and came around the corner and immediately swooped in. She reached over the sausage link fingers of the tech wielding the needle and started going at it herself. Just as the stars came into my vision, a vile was transferred to the tube meaning that the blood was coursing and the fishing was over.
I wanted to cry and scream but I did nothing except listen to the techs in the break room laughing from deep in their bellyies and howling “Lawdy this” and “Lawdy that” in their Southern drawls as my tech struggled with the butterfly release and told me to put pressure on the square of white gauze she covered my access hole with.
I got back to the waiting room and greeted Craig with what was obviously a distraught face because he said: “Not good?”
I could only shake my head ‘no’ and pull my sunglasses over my eyes as I felt them welling hot with tears.
Before I could e-mail my trial nurse to tell her that I finished, I got an e-mail from her saying that she was so sorry but that the scheduler had forgotten to put in another test that was needed. In short, they needed another vile of blood and could I please go to the other lab.
Because I am on a clinical trial, for this particular research blood they could not use my port without doctor’s consent and I was so tired and so wounded that I just wanted to get it over with. Begrudgingly, I laid my other arm on the chair rest to be attacked. This particular technician apologized many times over seeing that I already had fresh gauze on my opposite arm. It was not a good start to the day. Ouchie.
The blood work revealed that my Neutrophils (a type of white blood cell) had in fact bounced back on their own. I was up and over the 1,000 cut-off level so could resume my pills. However, my platelets had further plummeted down to 37 (normal is 140-440). Again, they want to get as much of these drugs into me as possible so they’d rather I start back up and just expect that I’ll need a platelet transfusion at some point soon. I just need to watch for any signs of bleeding as if it starts, I won’t be able to clot.
Finally, I was out of there. I was pretty tired and very frustrated, but despite Craig’s urgings for me to go home and rest, I wanted to do some further Houston exploring. To Hermann Park it was. A few buses later, we were there. It was very hot and sunny and I was stupidly wearing jeans. I was dressed for the chilling cold of the air-conditioned cancer center environment, not the Texas elements. We also badly planned a feeding period. I have no appetite so it didn’t matter to me, but Craig was quickly running out of fuel.
Our assumption that the park would be a flurry of food options was dead wrong. After walking across much of the park, which is in fact a very beautiful green space, we discovered that the only place for lunch was inside the property’s Houston Zoo. But, we’d have to pay zoo admission to be able to get past the gates.
Craig was fading fast; It’s hard work trying to console a teary Karin. We made the decision that we were already there and we might as well check out the zoo. I’m actually not a big fan of zoos. I get sad looking at the animals in the cages and I just couldn’t shake my germaphobia. There were kids and wild animals everywhere.
We were already in the gates checking the schedule for the sea lion feeding demonstration when I said:
“Sorry; I can’t do it,” and burst into tears again knowing that the treatment effects had beat me for the day. My body had just completely given out. We knew there was a 30-minute guarantee so Craig bolted to the food stand to get some sandwiches for us while I hobbled out choking on my tears, hiding behind my sunglasses until I found a bench in the shade to wait under.
I watched Craig at the ticket booth, arms raised in protest, and could tell that the 30-minute money-back guarantee was anything but a guarantee. Luckily, my husband is a whiz at wheeling and dealing and we didn’t feel guilty at all using the cancer card in this case. I saw him gesturing over to me, forehead rested on my hand, elbow rested on my knee with my jeans bottoms rolled up as high as they could fold as I was completely overheated. After a manager was called in, we got our money back.
I wanted to be back in the apartment so badly as I was so tired and was even more frustrated that we had to argue our way out of damn zoo entrance fees. Shit from the sky then rained on my pity party. I felt a splat on my forearm, looked down and saw some freshly digested berries, deep purple in color, the feces painted on the bench back like a crime scene. Obviously I cried and shook even harder behind my sunglasses. Craig walked up, food in hand, as I squirted Purell on my human litter box. This made us both laugh some (It was even funnier the next day when Craig got a bird poop right to the forehead. Many have told us that this is good luck.)
We found a shady tree to eat our wraps under and discovered some peace in the cool breeze by the pond. I was still in a funk: very sad and missing home, especially missing Sammy. Hot, tired, achey, and barfy.
Then seemingly out of nowhere came what I like to pretend was a Dodo bird. Whatever it was, it was a huge bird with gnarly red gizzard looking substances all over its face. It was limping just like I was and had found its own resting spot under a bush a few feet from us. We couldn’t help but laugh at this and I suddenly became more concerned about the welfare of this massive fowl than my own issues. Did it escape from the zoo? Was it hurt? Should we tell an official?
When it suddenly stood on its horned webbed feet and started hobbling right toward us at a good clip, my sympathy stopped and fear set in. All I could think was this thing was going to honk me in the ass and I’d bleed to death without my platelets.
Sometimes it takes a Dodo bird to get you off your ass and help you shift perspective. If it weren’t for that thing I don’t know if I would have ever been able to peel myself back up from the grass. Brave Craig headed right for it with the camera while I started running in the other direction in protest of his boldness.
I don’t think I spoke a word the whole train ride back to our place. I know I didn’t on the walk from the station to our apartment. I didn’t have the energy to speak and walk simultaneously and I didn’t want to wait for a cab. I wanted to be “home” and at the time it felt that my legs were the fastest mode to get there. When I run out of energy I also run out of patience and I rely on no one but myself. We got back to the apartment and I collapsed into the cold black leather of the living room sofa. Craig literally spoon fed me ice cream and forced me to drink threatening to call an ambulance unless I could tell him my birthday and my parents’ names.
I mustered: “June 29, 1982. Paul and Laura Dubreuil” in a faint voice whispered through dry lips before I fell into a deep, hard sleep.
....................
A little Dave and Tim performing "Dodo" (ironically appropriate lyrics):
Dave Matthews "Dodo" lyrics
Once upon a time
When the world was just a pancake
Fears would arise
That if you went too far you’d fall
But with the passage of time
It all became more of a ball.
We’re as sure of that
As we all once were when the world was flat
So I wonder this
As life billows smoke inside my head
This little game where nothing is sure, oh
Why would you play by the rules?
Who did, you did, you
Who did, you did, you
When was she killed
The very last dodo bird
And was she aware
She was the very last one
So I wonder this
As life billows smoke inside my head
This little game where nothing is sure, oh
Why would you play by the rules?
Who did, you did, you
Who did, you did, you
You say who did, well you did, you
If all the things that you are saying love
Were true enough but still
What is all the worrying about
When you can work it out
When you can work it
Oh I wonder this
As life billows smoke inside my head
This little game where nothing is sure
Why would you play by the rules?
Who did, you did, you
Who did, you did, you
You say who did, well you did, it’s you
Friday, April 1, 2011
Chemo by Mouth?
Wednesday, March 23, 2011
Houston, Here We Come
Friday, January 21, 2011
SGN-35 Treatment Two
My mother accompanied me to Sloan-Kettering this time around. My appointment with the doctor was early – 8 a.m. on Thursday so we trekked into the city the afternoon before to avoid wee morning hour travel. My anxiety built for the few days leading up to yesterday. Wednesday I did my usual dragging feet routine. I slept until 9:30 a.m. (very late for me) and found many, many things to do around the house that morning. I didn't get into my car to drive to my parent's house until the last possible moment. I was procrastinating the inevitable I suppose ... the knowingly placing your hand on a hot burner phenomenon.
The train ride in was uneventful. As I usually do, I decided to factor some NYC culture into our agenda so that the trip wasn't solely medically related. I like to have that balance and to take advantage of the time that I get to be in New York City because soon, I'll be confined to my hospital room for many weeks and will be restricted from those things that I love – good restaurants, theater, museums for a very long time. But that is not now so I must live and love them now.

In my chemo procrastination/denial stupor I had come across reviews for a play on Broadway called "Time Stands Still," which is running for just another couple of weeks. I fell deep into reading all the reviews, about the story line, the Pulitzer Prize-winning playwright Donald Margulies, the esteemed four-person cast of award-winning actors, including Laura Linney and Christina Ricci. It lived up to its reputation.

All of that excitement did wonders for squelching my anxiety about the next morning and for tuckering me out enough to fall asleep despite being in an unfamiliar twin bed on wheels with the even more unfamiliar sounds of car horns and rumbling buses 10 floors down outside our window.
I presented my nurse and Dr. Moskowitz with the sputum I had caught for them in the sputum collector they had provided for me last time around. It was neon green and at once crusty and tissuey. I told them the color was an added bonus as it presented itself during my sinus infection. But in all seriousness, since my second relapse in July, I've been coughing up very strange objects (what I imagine to be fried lymph nodes). They come from deep in my chest and out my nose after much effort or sometimes just fall into my mouth. They always have the same shape and characteristics – nothing like normal phlegm. On the last visit, the doctor was intrigued by this and asked me to bring a sample. I was happy to be able to produce and am eager to hear what the microbiologists analyze it as. I have another empty spewtum cup for the next encroachment. This time it will go to the pathologists to analyze. How's that for excitement?
My blood counts were lower than I had expected. My white blood cell count is only 2.5 so I still have to be very careful to stay away from sick people. My hematocrit and hemoglobin are also low – hematocrit is only 29.6 (normal 34-46), which means that I'm still anemic and explains further why I've been so tired. There is still a massive battle happening inside my body and I can't expect to be feeling stellar. She's good at helping me to manage my expectations; at helping me be realistic but no less hopeful and expectant of what I can and will accomplish.
We talked about next steps. I have a PET Scan scheduled for two weeks from now: Feb 3. It will reveal if (that) the SGN-35 is working. Dr. M told me that it would be a surprise if the disease is completely gone after just these two rounds. Not that she was being negative, but she didn't want to get my hopes up. In the drug's studies, it has shown to take more like 4 cycles to eliminate Hodgkin's presence in patients. This test is just a test to make certain that there has been some reduction.
We packed up our things and were on our way off the floor when suddenly my breathing and chest were a little tight and I kept going into coughing fits anytime I tried to take a deep breath. I didn't want to go back into the infusion room but I also didn't want to leave the hospital in case something bad was happening to me. Despite my mom persisting that I go back in and tell the nurse, I was snippy and noncompliant and just wanted to get out of there. However, I wasn't stupid enough to leave the hospital.
So I found a chair in the lobby and sat. I breathed and people watched until the coughing ceased, which didn't happen until up popped another little organ into the tissue I was blowing into. After that passed through my inner tubing, things seemed to open back up. As far as normalizing my breathing, I was just short of needing a paper bag. But I knew in the back of my mind that I had gotten myself into a self-inflicted tizzy and that I could also get myself out. Nothing was wrong. I was just being paranoid that something could be.
After about 15 minutes of telling my poor mom to stop looking at me and asking if I was okay, it passed and we were finally in a cab to Grand Central and on the way home via a different train line to a different station because I could not wait the nearly two hours for the next train to Wassaic, NY, where we had left out of. I had some major ants in my pants and all I wanted was to GET HOME. Luckily my sister is flexible and picked us up in another part of the state – she could probably tell I was on the verge of a breakdown. I like to think that I'm pleasant to be around most of the time, but I don't know how they all put up with the brattiness that can kick in when I occasionally lose it.
Once the train lurched out of Grand Central and I sipped a little Dr. Pepper (odd how this non-soda drinker craved that) I felt better. Much of the ride was passed marveling at a big bellied man in an oh-too-worn white undershirt one cart up dancing in the vestibule like nothing I've ever seen. Killer moves. He was r-o-c-k-i-n-g out to whatever was pumping from his earbuds. I think he was singing as well, but we had the insulation of the cab doors between us to muffle that – probably a very good thing. That vestibule was his stage and he took full advantage of its space grapevining from one side to the other. He even incorporated the poles into his routine like a daytime stripper. It made me smile hard.
Now here I am back with Sammy and Craig and even more snow today. The sun is out and we had a beautiful, albeit tough walk in the additional six inches on top of the two feet we already have. I'm looking forward to seeing some good friends tonight but more immediately, to a much needed nap. I'm very exhausted, but very, very happy to have made it through yet another treatment.
Tuesday, December 28, 2010
Research Study for One





