Thursday, June 30, 2011

Allo Transplant Day+5 through Day+14

Since I continue to not be feeling well enough to write, I’m having Craig transcribe a basic update that I’m narrating. I’ve been in the hospital for 21 days and it’s been 14 days since the transplant. I have not left this isolation room.

Many of the side effects I recently experienced have left. Unfortunately, new ones have come in. The debilitating bladder spasms and pain is gone. I’ve regained control of my bladder and no longer have to use the commode at night. It seems chemo caused this bladder irritation.

Turned out my Hickmann Catheter line was infected so with a minor surgery they pulled that line and put in a new triple lumen catheter right next to it. Unfortunately it is in an awful spot, basically coming out of my armpit, making it tough to maneuver around, but it is working. At least the pain from the infection site is gone.

One-week post transplant my curly locks started to come out in clumps off of my head. In the shower I wet my hair and the weight of the water was enough to pull much of it from the back of my scalp and leave clumps in my hand. My scalp itched and burned so after a few days of discomfort, Craig helped me to buzz it off. I still have some stubble patches but it’s much easier to watch that fall out than longer hairs. While my eyebrows and eyelashes are still in tact, I’ve lost all my nose hair and delicate inner membranes.

I’ve had a few transformations to my bottom lip. I got incredible sores on them as well as in my mouth. The lip area has been particularly uncomfortable because it has been bumping against my teeth, is very dry, swollen, and bloody. Twice now, it has completely sloughed off. That has not been a fun experience. Right now it is pretty normal and I am just working on keeping it moisturized with vitamin A and D ointment. The sore on the back of my left inside cheek is also healing slowly.

Mentally and emotionally, I’ve been better than I anticipated. It wasn’t until day 21 that I said out loud that I’m ready to get out of here. I think it’s because I’m feeling so tired and fatigued and every day brings some new symptom so I wouldn’t want to be anywhere else right now. Here, the experts can do their best to alleviate pain, assure me that this is temporary and expected, and make me as comfortable as possible. I’m still so pleased with the caregivers and have gotten quite close with some of the nurses who have seen me in some very vulnerable moments and positions.

Craig has been with me just about all day every day, my parents have made a few trips in, and I have had visits by a few local friends. Mostly though, I have not had the energy to visit with anyone, return phone calls or emails, nor even be on the computer much. I’ll literally fall asleep typing mid-sentence or the room will spin and I’m too nauseous to focus on the computer screen.

Every day cards, packages, and messages come and I am so appreciative of these warm and gentle distractions. My room is filled with so many reminders of all of the love and support that I have behind me. The medical team is constantly remarking about how bright and well decorated it is in here.

June 29th brought my 29th birthday. My closest nurse knew she wouldn’t be here on the day of my birthday so she came in the day before in street clothes to bring me some funny birthday balloons. More balloons and ice cream cake arrived from the rest of the nursing staff along with tons in the mail from friends and family. On my birthday eve, friends came by for a short visit of laughs, complete with luau themed decorations. Though I was drugged up and not feeling well for most of my actual birthday, Craig was here to cheer me up with some games of Family Feud on the Wii and other distractions.

The engraftment of my sister’s cells has started and blood counts have begun to rise. My white blood cells are now at 2.5 and my neutrophils are 1.1. This means my new immune system is starting to grow and things are on track in that regard. The emerging white blood cells have helped to fight the many infections that I’ve had. My platelets and red blood cells are still low but holding. I haven’t required transfusions in the past few days. Previously, it was nearly daily that I was receiving blood products. To add some excitement, I had some scary reactions to platelet transfusions. So now, I need to be heavily pre-medicated before they transfuse.

I haven’t been able to pick up a book nor get through a movie without falling asleep. Somehow the days go by pretty fast, mostly working with the different medical professionals that come through this revolving door, and there’s a lot of napping. I’m nauseous, have been having diarrhea, and vomiting most days, sometimes many times per day, and getting very little bits of food down without it coming up. My stomach and back pain have been very uncomfortable. I can tell that my GI tract is a real mess from the chemo.

My legs and back feel very cramped up since I haven’t been able to walk more than back and forth across the room. I’m getting sick of being attached to a huge IV pole. There are many fluids running 24/7. This caused me to gain up to 15 pounds of fluid. In one night with a little over dose of Lasix, I dropped 8 pounds in just a few hours. This left me dizzy and light headed with nurses rushing to replenish my electrolytes. I am now back at my admission weight and it feels nice to not have all the swollen parts.

I miss my dog Sammy tremendously. I can’t wait to go for walks and cuddle with her when I get home. She has been staying at two wonderful “summer camps” at friend’s houses. The frequent photos and even a Skype session have helped keep me close to her.

Focusing on all that I have to return to when all this is over is a huge help. I daydream constantly about swimming, the beach, hiking, kayaking, picnics with my family, BBQ’s with friends, fire pits, camping, and smiling, laughing and joking without having any pain or discomfort to deal with. I dream about starting a family, becoming a better writer, driving my car, and being able to eat delicious foods whenever I want. I dream about exploring everything and being at the pique of carefree physical health.

The reality is that soon these side effects will stabilize and I’ll get a little bit stronger. I may be discharged as early as next week to recover at The American Cancer Society’s Hope Lodge in Manhattan. With that will be a whole new set of adventures, but most importantly I’ll enjoy some freedoms like being untethered, not getting woken up throughout the night for vitals to be checked, walking in crowdless places, and fresh New York City air. That will be nice.

Monday, June 20, 2011

Allo Transplant Day 0 Through Day +4

An update from Craig:

Karin has asked me to write a brief blog to update readers about her progress. I am here in the room with her, but she is too weak to write now and knows that people are concerned and awaiting an update. I will write honestly and openly.

Last Thursday Karin received 11 million stem cells intravenously over the course of an hour that had been collected from her sister the day before. Her family was by her side. Karin did great and glowed while receiving the cells. It was very peaceful and she slept through some of the transplant. Holding the bag of Kristen’s stem cells that will kill the cancer was a surreal and indelible moment.

While we all rejoiced in the milestone of the stem cells being transplanted, the reality is that the most difficult part of the process has just begun. The days since have been a drug-induced blur. A number of related/unrelated side effects have cropped up, making this past week very difficult. She’s currently receiving many antibiotics and many pain meds to combat the discomfort and pain, so it’s difficult to know what has been causing what.

In addition to rebuilding herself on a cellular level, Karin is working hard to overcome:

-an infected and swollen ulcer in the back of her mouth and soft tissue inflammation and infection of her cheek and jaw

-an infected catheter line from the June 9th surgery where she receives medication and gives blood. The Infectious Disease team and Head and Neck team are carefully monitoring and culturing these sites. They are very swollen and tender. It is likely that the catheter will need to come out tomorrow morning. Another surgical procedure will be necessary to put a new catheter on the other side of her chest.

-bladder urgency, spasms, lack of control, and possible infection. The IV fluids make her urinate nearly every hour, which is very painful. Yesterday she began receiving constant intravenous pain medication and a button that allows her to self-medicate to reduce the pain faster than by calling for a nurse to bring relief.

-fluid retention of 10 pounds

-total loss of appetite

-daily nausea, vomiting, and shaking chills

-extreme fatigue

-a lot of poking and prodding to figure out what is going on

-blood counts near 0. She has received red blood cell transfusions the past 3 days. Yesterday she had a severe allergic reaction to a platelet transfusion. Despite pre-meds, her body became very itchy, covered in hives, itchy throat and coughing, and lots of swelling. She later received a different bag of platelets and with further precautions and monitoring, did not have an adverse reaction.

-beginning of hair loss

-a fever tonight

Other than that, she feels great. Dr. Sauter says that while many of these symptoms are not necessarily common, he is not overly concerned. This kind of thing can happen as a result of the lead-in chemotherapy, from the immunosuppressant medication, or from the temporary absence of an immune system. He thinks that time and antibiotics will heal these problems. Karin has been good at vocalizing her concerns and asking for help as needed.

Karin’s daily highlights include the sunlight coming through her window in the morning, looking at photographs and gifts of original artwork decorating the room, watching/dozing through movies, and crossing off days in red ink on the calendar. Oh, and long visits by me, she adds.

Karin’s blood counts are expected to start coming in at some point early next week. At that point, these infections should start to work themselves out and she’ll slowly regain some strength and appetite. Until then, I hope that she’s able to sleep through as much of these days as possible and keep the pain tolerable.

Karin has appreciated the many messages and prayers and she hopes everyone will understand her inability to respond. Even if you don’t hear back from her or me, please know that your words and encouragement have meant the world to us. Many thanks.

Wednesday, June 15, 2011

Allo Transplant Day -7 Through Day -1

After a ridiculously delicious Wednesday night dinner chef-side at The Mill at 2T, Craig and I were hopeful that the creamy centered popovers, beer marinated flank steak, and prosciutto-wrapped frites would help fuel us through the next day–and the months to come of new adventures.

Thursday, June 9, marked Day -7, the first day in my allogeneic stem cell transplant process. And it's a process for sure. Thinking forward to the summer and knowing that Craig would need to be back and forth between New York City and Connecticut on several occasions to check on things and attend events, his Uncle Drew was gracious enough to offer to drive us into the city from his Stamford home and offer up a parking space for Craig's car in their driveway, which now sits walking distance to the Metro North train stop. It worked out perfectly.

Once at Memorial Sloan-Kettering Cancer Center in Manhattan, I checked into the Day Hospital floor where I had my new Hickman catheter line placed. The catheter has three prongs (or octopus dangles, as Craig calls them). This gives the ability for many things to be going into me or taken out of me at once and now that I've been hooked up to this massive IV pump for many days I can see why that is necessary.

The procedure was pretty painless. Unlike at Yale, here they put me under conscious sedation so the process was much less horrifying than when I had the Quentin catheter placed for my auto transplant. The surgeon put a knick in my skin just below the collarbone and shimmied the line down into my jugular vein. It then pops back out lower in my chest and dangles out of me. It is now an extension of me and that extension is constantly connected to my massive IV pole, which has six pumps and two "brains." I have come to call it Jinx, named affectionately after the robot in the fantastically 80s movie Space Camp. We have a love/hate relationship that’s for sure. I love it because it gives me what I need but I hate it because it is cumbersome and clunky, its alarms go off a lot and feels like I’m dragging around shackles.

The line is heavy with the weight of all the tubing against the still tender insertion site. After much experimentation and nursing expertise over the first few days I've found that button-up shirts work best so that I can pop the lines out through the openings between the buttons then pin it up to a yellow tube necklace outside of my shirt to alleviate the weight on my tender skin. On his own accord – and to my total surprise – my adorable husband went to H&M and bought me a couple button down shirts since I was not prepared for this scenario. It makes life a lot easier since I cannot be disconnected, even for a shower. Jinx comes with me and hangs out close outside the shower curtain. I wash up around the tubes that dangle over my belly.

After my catheter insertion I was admitted to the 8th floor transplant unit. The door to my room shut and besides a one time brief escape with the physical therapist, I am not able to leave it. The isolation restrictions here are very tight. After five days in the very awkward and small set-up of my corner room the walls started to close in on me. It was difficult to get around the room with Jinx attached to me. I hit my head on him several times. I had a bed, two chairs, a little counter with a computer, a TV, a DVD player from which we hooked up a Wii, and of course my itty bitty bathroom and shower for me. Everything we needed, but just all jammed in like a jig-saw puzzle. The frustration of the confinement – nowhere to put anything, nowhere to stretch out ­– led to an anxiety attack on day 5 after a particularly difficult fight with the sticky shower curtain and the inability to clean my body without soaking the machine attached to me.

My nurse knew that something was wrong when I was all welled up with tears and told her I had trouble breathing and thought that it was just the anxiety of everything taking over. She asked what it was specifically and I told her the smallness, oh the smallness, of the room. She gave me some Ativan and came back later with the news that a larger room had opened up and it was mine. We moved to the best real estate on the floor Monday night. My view is beautiful. My window faces East and brings in warm morning sun. It’s all decorated now with pictures and books and thoughtful trinkets people have sent me for encouragement. There is a full couch and the bathroom even has a full counter where I can lay out my toiletries and breathe a little in there. The change has done wonders for my mental health. I knew from some insiders to always get your name on the room upgrade list but I never imagined the difference would be so great.

The excitement of the move allowed me out of the room for about 1 minute, but that’s been it. However, there are very few hours in the day that I’m alone. There is the good company of my husband who bikes across Manhattan from the Miracle House, the place he is staying, to be with me for the day. We play games, watch online videos, talk, nap, and encourage each other. We even celebrated his birthday here. A few days later, I had a total surprise visit from my college roommate, Frankie, and herhusband Steve. They live in Virginia so I was completely taken off guard, but they happened to be in Connecticut for a wedding and made a big detour to come see me. That was thrilling! We've been encouraging people to cut out magazine smiles to attach to their mask and this visit officially started the trend.

I’ve also gotten to Skype with my mother-in-law and childhood bestie and “sit in” on dinner/bath routine with my niece and nephew and their parents. These were tremendously helpful escapes.

Last night my parents and sister arrived. We had a brief visit and they came barring all the essentials I had requested – more button downs, lemon drop candies, a biking glove, our mail – the randoms. They will be visiting for the week while my sister has her stem cells collected and to be here through our Day Zero transformation.

The medical team visits are every four hours, all through the night. I’m awoken nearly fully at 5:30am each day for blood to be drawn from my catheter. At 6am comes the earliest morning vitals round and requires me to get out of bed to be weighed.

I see the nurse all throughout the day and get a special daily visit by “the team” of the nurse practitioner and doctor on rotation, which fortunately happens to be Dr. Sauter this week. I see a physical therapist once a week. The dietician and the social worker pop in. I’ve had visits from the Integrative Medicince Department that included a mind-body specialist who coached m on meditating, a reflexologist who massaged my feets, and a music therapist who had a drumming jam session with Craig and me. The nursing assistants ensure that I shower every single day. Someone cleans and disinfects my room each day and changes all of the sheets. Let’s just say there are a lot of people in and out all the time.

Every single member of the team has been exceptional. The staff who work on this floor are all smart, professional, fun, accommodating, and thoughtful. I have no complaints about the care I’ve received here. What they have to do to me to get me through this process is not fun whatsoever, but having kind and competent people as my guides and partners in this makes a tremendous difference. They care for me as if I were their best friend that needed to be nursed to health, not like a “job” they have to attend to.

These first five days leading into transplant have been very difficult. Today, day -1, my day of rest, has been the worst of all as the chemo side effects are starting to catch up. Throughout the week I’ve received Fludarabine and Melphalan chemotherapy, Sacrolimus and Tirolimus immunosuppressants, constant anti-nausea drip, Potassium and Magnesium for nutrition, protonics to coat my stomach; fluid, fluid, and more fluid; Heparin to open my veins Vancomycin, Acyclovair, and antifungual prophylactic antibiotics. I need to shower daily with the surgical scrub Hibicleanse and powder my body’s “folds” with an antifungal prescription powder.

To help with pain of headaches and other ailments I’ve been pumped with morphine and oxycodone. To help with nausea I’m constantly pumped with Zofran and need Ativan at least a couple of times a day to cut the nausea that still comes on top of that. I’ve puked only a couple of times: a solid one my first night though – great way to make an entrance on the floor. I’ve lost all of my taste buds therefore my mouth feels like a have a furry bunny in it all the time: it’s dry and holds an awful taste that permeates anything I attempt to eat, so mostly I don’t.

I pee in a hat. I poop in a hat. I vomit in a bucket. They want to measure, look at and know about it all. My IV tubes are changed every few days and at any sign of a fever or even chills I am cultured from every orifice. Currently there is a question as to whether my Hickman catheter line is infected, as the skin surrounding it is tender and red and it’s now oozing pus. Having that drained today was one of the least fun things I’ve ever had done to me.

My blood counts have just about bottomed out, as hoped. My white blood cell count today is 0.2 so there should be plenty of room for Kristen’s donor cells. The dropping of my red blood cells leaves me very weak and the low platelet counts leaves me susceptible to bleeding. I will soon be low enough to require transfusions.

So that’s really what’s been keeping me busy. When I’m not being prodded I have a little time for games and reading. Mostly, I do a lot of day dreaming about my future out of here and beyond all of this. So far this process has been a tremendous test of my strength and endurance in every way.

The other day I saw two delicate red balloons on long white strings float right past my 8th floor window. The evening before moving into the hospital, I received a box of 1,000 hand-folded pristine, delicate and beautiful origami paper cranes from an absolute stranger who has followed my story and wanted me to have this most healing and ancient symbol of healing. I take these as signs of the peace and strength and hope that I am looking for.

My younger sister, Kristen, spent today in the donor room hooked up to the apheresis machine for four hours with her arms straightened out by the IV needles within them. One side pulled her blood out, the machine caught it in the middle and filtered out the stem cells, and the other arm received the cells back into it. She’s expectedly tired and in some pain from the five days of Neupogen shots she had to endure, but she went through this all without complaint. And she did well: the lab received many more stem cells than they even need. Her part is now done and I’m so relieved that she made it through safely, though I never doubted her. I love her more than ever for this incredible gift she has given me.

Tomorrow is the big day – transplant day. My body will open fully and let my sister’s stem cells flow in and get acquainted with what needs to be done in there. Of course I am apprehensive and anxious but I know that there is so much love and hope in those cells. We all hope that this selfless act my sister endured for me and the immunotherapy it will provide will be the final key to a cure.

Tuesday, June 7, 2011

It's a Go for Transplant

The allogeneic stem cell transplant is a go. After several attempts (this is the fourth), it is going to happen. I am being admitted to Sloan-Kettering on Thursday – as in two days – to start the process. The past two weeks have been full of travel and pre-transplant testing, preparation, paperwork, organizing, packing and lots of anxiety.

During the allogeneic (donor) stem cell transplant, I will receive my sister's stem cells, a type of immunotherapy. They will mature inside of me into new white blood cells and will replace my own "broken" immune system with her strong one. The goal is for her defensive cells to destroy and defend against any lymphoma cells within me or any that may creep in while her cells are settling in. I will get five days of lead-in chemotherapy (Fludarabine and Melphalan) along with some immuno suppressant drugs primarily to weaken my immune system enough to let hers in. Hopefully the chemo has some anti-lymphoma effect as well, but it is really the donor stem cells that are my next form of therapy.

I am not in "perfect" remission, but after much review from the top docs in the world it was decided that this is the best time and the best shot. I had a good response to my last therapy, considered a "partial remission," and may never get this clear again. My track record has shown that the lymphoma I have is aggressive and adaptable and comes back after every treatment drug even with an initial response to it. It's unknown whether my body could handle any of the few chemo regimens that are left to try without damaging it permanently and forever closing my bridge to transplant. So, here we go. The time is now: we've got to jump on the chance that we have.

I am feeling relatively strong right now, rising back from the very difficult clinical trial drugs. My sister is in the best shape of her life as she's been hiking in the mountains of Nevada all day every day for work. All has happened very quickly. I got the final word that we were pulling the trigger last Wednesday at 6:30pm and my sister hopped a cross country red eye flight from Vegas after her roommate had to drive into the boonies of the Spring Hill Mountains to get her off the campsite. She made it into Sloan-Kettering to complete all of her donor testing the next afternoon. She is here, safe and ready for action. My Sloan transplant doc, Craig Sauter, has been AMAZING in pulling strings to get the logistics moving so we don't give the lymphoma any longer of a window to grow back. I am extremely confident and comfortable with the team there and have nothing but good things to say about them.

On Thursday (Day -7), I'll get a minor surgery to insert a different type of catheter line in my chest so that I can receive many things into my body at once. On Friday I will start the lead-in drug therapy. In the meantime, my sister will start her Neupogen shots at home with my mom on Saturday to stimulate her bone marrow and push her stem cells into her blood stream.

After five days of chemo, Thursday June 16, will be transplant day (day 0). My sister will be hooked up to the apheresis machine at Sloan to pull out her stem cells and the bag will then be brought up to me on the transplant floor to be sent into my bloodstream. By the time I leave the hospital the hope is that I will have 100% Kristen blood ... pretty close to tiger blood.

My sister is a tough, capable and strong woman. She is a tattooed rugby player who chisels rocks and chain saws trees to blaze hiking trails for a living. She's worked and camped in the Southern California desert for 10 days at a time and now camps with her crew nightly in the Nevada mountains – one evening being so cold they had to do the penguin huddle for warmth. I have no doubt that her stem cells will kick some lymphoma ass once we get them in there and no doubt that she will breeze through this process. However, as confident as I am that she'll be okay, it doesn't make it any easier to watch her go through this and to know the pain and the worry that surrounds her. It's extremely difficult to watch my little sister endure any hardships and to think that I'm at the center of this one can be unbearable at times.

After the actual transplant day (day 0), I will be in an isolation room not allowed to leave for 3-6 weeks depending on how quickly my blood counts recover and if I am eating and drinking on my own. I can have limited visitors as long as they are not sick, nor been around anyone that has been sick, and they have to wear a mask, gloves, and gown while in my room. My parents and siblings are planning trips and I look forward to their companionship along with funny movie watching, Wii games, lots of writing and the visits from Integrative Medicine practitioners – I hear the foot massages they provide are fantastic! In all reality, as crazy as it makes me to even think about being locked up in that room, I'm sure that I'll be kept very busy with doctors, nurses, PCAs, physical therapists, dietitians, social workers, art and music therapists, meditation therapists and all that comes with a prolonged hospital stay. I'll have my laptop and internet connection, which will certainly be a saving grace. And of course, my husband with me by my side.

Once released from the hospital, I'll need to stay in NYC for another 60-100 days so that I'm able to be closely monitored. I'll need to go back to the clinic for checks very frequently. Craig will be hopping around the city for overnights in the beginning, but once I'm discharged, we'll be staying together at the American Cancer Society's Hope Lodge. Summer in the City it is! Once I'm out of the hospital, I'll be able to be outside and do things, often with a mask and gloves and super precautions, but I will be able to be active and recoup. I see a lot of time on blankets in Central Park in my future.

It will be tough and of course there is some fear associated with the risks, especially of graft vs. host disease that can come with my sister's cells attacking my body's healthy cells and systems, but I am very hopeful. Again, she is a perfect match to my DNA so the risk is much lowered. The doctors will constantly be controlling her/my immune system with immunosuppressants as things progress. Dr. Sauter explained it like letting a team of horses in – they'll be out and running, but we'll have the reigns to pull back on if they go too wild. It'll be a delicate balance of giving them enough, but not too much, freedom to do their job. There have been many signs revealed to me that this is the right time to throw my ace in the hole and take a chance at a forever cure. I have a lot of positives going for me and my particular case. Despite being nearly seven months since we first tried for this transplant, I actually feel stronger and more ready than ever. It didn't feel right those first several times but now it does and that must mean something.

I'm certainly exhausted and highly sensitive, worked up and unstable as I try to get everything in order, but with each day and each check on the To-Do List, all becomes less menacing. I will miss our home, my comforts here, and my Sammy dog very greatly – that will be one difficult goodbye. But mixed into all of this week's preparation has been some wonderful moments as well. Craig and I floated our kayaks down the river. Sammy and I hiked all the way to the ridgeline lookout (something I haven't been able to do in quite some time. It took me many rest stops to catch my breath, but we did it). I've been reunited with my sister. The weather has been unbelievably perfect: hot, sunny, light breeze. I saw one of my favorite artists Ray LaMontagne play in Central Park and I met John Mayer there, touched his arm and told him I loved his music. Friends came over with an incredible meal for us. We got to spend time with our ridiculously adorable niece and nephew and catch up with my mother-, sister-, and brother-in-law. I've had daily breakfasts in the morning sun on our porch. I'd say that's a pretty good start to summer.

I have a day-and-a-half of freedom left and a lot of clothes to pack, but I'm learning that I don't have to figure it all out right now, everything will work out in its own time. I'm grateful that I have this shot and I'm going to take it no matter how scary it is. I know I can handle it now. The future holds too many unknowns and the past has left me with many scars to deal with. I don't want to miss my train out of this. Let's roll.