I am proud to say that along with my cancer co-pilots Craig, Mom and Dad, I made it through the first Smilow Cancer Hospital adventure. We found the right parking garage, navigated the elevators, the infusion check-in area, the lobby, the surgical floor of the main hospital and most importantly, I found where they sell Starbucks coffee. Over the past three days we got quite a tour of the place and became very familiar with it after a run of long days there. The great part is that we didn't have to navigate it alone. I have my own personal nurse/tour guide/organizer/personal assistant/appointment booker/patient advocate named Kathryn. I know already that she will be a God send throughout this process. She is Smilow's Autologous Stem Cell Transplant coordinator and wow, does she have it together. She whisked us around, explained everything and kept me on tract.
I have to say that the facility is beautiful. The main lobby boasts comfy black leather furniture, a water wall, beautiful contemporary artwork and even a piano that plays itself (and I understand they also feature guest pianists). Everything is open, airy and bright.
The medical oncology area is broken up into different pods. Each pod has four patient areas within it that are separated by half-walls with fogged glass and curtains that you can pull closed to separate yourself from the patient across from you if you choose. The rooms have huge windows so – I imagine anyway – that there is lots of natural light when it's not as gray and rainy as it had been during my time there, though it was calming to watch the rain drops stream down the windows. Each patient area has it's own moveable flat-screen TV, chairs for visitors and a recliner that even has a heating option to keep patient's buns warm, plus an overhead radiant heat option. The room's color pallete is pale yellows and spring greens and the floors are wood laminate so overall, you don't feel like you're at a hospital. And, they even offer you warm terry cloth blankets that come directly out of a heater. Volunteers come around to see if you want a drink or snacks and the IV poles are sleek and slim. It is very evident that this is a brand new facility. In fact, they've only been on the floor for five weeks so the nurses are still getting used to the space. The apheresis unit where I was on Tuesday had only been open for a week.
My mom, Craig and I arrived on Monday morning eager to start the stem cell collection process. After morning blood work came back it was determined that I needed some blood transfusions before I could start the collection. My platelets had dipped too low and with a deficiency there is worry for excessive bleeding as without enough platelets, my blood could not clot efficiently. My red blood cells and hematocrit were also very low - they dipped lower than they ever have. This left me very anemic, weak and lethargic. It explained the naps that I had needed in the days previous. The drop in counts wasn't at all unexpected - this is what happens after the ICE chemo (and what is also hopefully happening to the cancer cells).
I have never received a blood transfusion in my life and had no idea what to expect. Let me tell you, I never would have thought that platelets are yellow or that I could have an allergic reaction to the blood cells because of something the donor ate that day. I had several nurses throughout the day, and luckily each were very happy to answer all of our questions and were able to put me at ease about the whole process. It was mostly Sunshine, a young nurse with a cute Victoria Beckham haircut, blue fingernails, a quick wit and blunt nature who took care of me. She was straightforward and funny – and liked to pick on Craig. We hit it off immediately.
I received the platelet transfusion first. The bag was hung and the blood cells were sent in through my port. They gave me pre-meds of Tylenol and Benadryl anticipating any kind of reaction I might have. I didn't feel anything as it entered my body - just woozy from the Benadryl, which I don't do very well with, especially on an empty stomach. I hadn't eaten since the night before and wasn't allowed to until it was determined whether I would need to go through a catheter placement procedure. The transfusion took close to two hours. During that time I also received another Neupogen shot. The nurse (not Sunshine) sent the meds into my arm painfully slowly trying to avoid it burning but it made it a lot worse and I was left with a big 'ol bruise.
The PCA, Wade, kept us entertained through much of the day. He is a spunky little guy, always cracking jokes and has a very obvious passion for his job. For example, yesterday he told me that I have the "vital signs of a pimply faced teenager." The day before he brought over a deck of cards and performed a trick for me. On day one he brought us over a list of their DVD collection and would pop over to check where we were in The Truman Show. I drifted in and out of sleep in the heated recliner under my cozy blanket until the last yellow cell dripped in.
Then it was down to the apheresis floor where I would get my stem cells collected. At this point, we had gotten the results back from the lab saying that my CD-34 indicator was 20, meaning that I had plenty of stem cells to be able to collect - great news. We'd first have to have the apheresis nurses look at my veins to determine if they were useable. Otherwise, I'd have to get a catheter placed in addition to the red blood cell transfusion.
The nurse, Winsome ("You Winsome you lose some" she said as she introduced herself) gave me a stress ball and started examining the action. I squeezed that sucker with all my might, but to no avail. She needed a big vein to work with as the apheresis machine pulls and inserts blood at a great velocity and a skinny vein wouldn't be able to handle it – never mind one that was full of scar tissue.
"Sorry hun," she said. "Great white blood cell count, but not so great veins."
She assured me that it would be better in the long run because with the Quinton catheter would allow me to have my arms free during the process and I wouldn't have to worry about holding still for four hours at a clip. Whatever, all I could think was that this meant yet another surgery, yet another scar. And, more time without eating. I don't do well when my blood sugar is low - ask my husband.
It was off to surgery in the Interventional Radiology area of Yale New Haven Hospital. At this point it was already nearly 2pm and chances of actually being able to collect stem cells that day were slim to none. Oh, and did I mention that my stomach was still grumbling? I forced Craig to give me a piece of gum even though I wasn't even supposed to drink anything because I was so dehydrated and weak I couldn't take it. I sucked all the sugar and the one calorie out of that watermelon mint Trident like it was my job.
I had to change into a familiar hospital johnny but was allowed to keep my pants on – always a plus! Suddenly I got very itchy and noticed hives starting to creep up. This was something that I was told to immediately alert a nurse about as it could be a reaction to the platelets. One on my arm ... one on my chin ... one on my forehead ... the back of my neck. The pre-op nurses were concerned and had to call back over to Smilow. More and more time passed before I got clearance to proceed as the hives faded.
I was extremely wary about the idea of having a cathether inserted into my neck and turns out, my nerves were justified. It was right up there with my first bone marrow biopsy as one of the most unpleasant experiences of this entire bout with cancer. It was just plain awful.
I was told that 90% of people do it without sedation so I thought, what the hell? If old people and little kids can get through it, so can I. Well, it wasn't easy. I was laid out on the surgery table and they placed draping over my head so that I had about a six inch window of light and fresh air.
"Are you claustrophobic?" They asked. "No, thank God," I thought, as this would be a claustrophobic's nightmare.
While under my tent of sterile draping they cleaned and sanitized a huge area at the right base of my neck prepping it to be sliced open. I kept my iPod playing in my left ear hoping that it would calm me and that it would drown out some of the sounds of what was happening. However, that didn't really work as everything took place so close to my right ear.
The surgery fellow who performed the procedure was extremely kind and friendly though he kept calling me "Ma'am," which I know is supposed to be respectful, but it made me feel old. I didn't have the energy to request another salutation. He stuck a needle into my skin several times in several areas to numb it all up. Similar to when a dentist slides a needle into your gum before a tooth extraction – and equally as pleasant. Then, once my neck was numb, he would talk me through what was going to happen so that I'd know when to expect a "pinch" or "pressure". The "pinches" came when he sliced open my skin over the vein, then again when he stuck in yet another needle in two different places to sew in the sutures. Even though it was numb, I could feel my skin being pulled along with the fiber as if it were a torn shirt being mended. The "pressure" came when he was jamming the plastic cathether down into my right interior jugular vein. It was kind of like sticking two straws into your vein. Sick, I tell you. I could hear the length of the cathether tubing being pushed down into my vein as it ran alongside my right ear. A quick whipping noise akin to reeling in a fishing line, but thicker.
"We've just got to widen up your vein here," he said as the second tube went down beside the first.
It took everything in my being to remain calm, to keep my head turned to the left, to keep breathing and not freak out. I knew that if I moved I'd risk him slicing my jugular – you know, what Jack Bauer does to torture people with a slow, painful, blood oozing death. I gripped my mala beads and moved around the circle: "one bead, one breath," as my boss, Garret, told me to do. It relaxed me immensely and I would focus on my tense neck and try to release the muscles as best I could while Jack Johnson island tunes played in my ear and I visualized myself being anywhere but on that cold, steel table.
Luckily, the whole crew who performed the procedure were very cool and very laid back. All men - so there was a lot of talk about funny, raunchy movies. We talked a lot about Rocky - well, as much as I could through my little tent, about music, about Reggae. This helped to keep me at least mildly sane.
After about an hour it was all over. All I could think about was getting something to eat. At this point I was seeing stars as all I had in me were drugs and I was loopy from the strength it took to make it through that placement.
Now after 3 p.m., I was wheeled into post-op where Craig was waiting. When he asked me how it went, all I could muster was "I got through it and that's all I can say right now." I got teary even thinking about trying to explain it and had no desire to even know what this new outgrowth of my neck looked like.
The nurse brought over a boxed lunch and it might as well have been foie gras tossed in caviar with a truffle sprinkle. I devoured that chicken salad croissant sandwich with abandon. It was the most delicious thing I had ever tasted, though at that point, even elementary school cafeteria brand meatloaf would have been melt-in-my-mouth luxurious. My headache faded and my shakes stopped.
Half-way through my sandwich Kathryn was back to get me for the red blood cell transfusion. I had to ask her for some time. I needed to get dressed, to eat, to breathe. It had been such a long day. We'd been at Smilow since 7 a.m. She gave me 20 minutes before I had to be back up on the medical oncology unit. I chewed and breathed and got my bearings back.
We reconnected with my mom who had been waiting patiently in the lobby and were back to the heated recliner in a different pod this time. These nurses were not happy to see that I was there for a transfusion that late in the day. They certainly did not want to stay past their shift. I was so tired that I had no strength to feel offended. But my mom and Kathryn took care of that, ensuring that no, my blood bag would not be taken down at 5 p.m. and that there would be a late nurse there to care for me.
It was more Tylenol and more Benadryl then one unit of red blood cells. Kathryn told me that after the effects of these transfusions set in I would feel like a demi-God the next day and then a super hero when I received another unit the following day. I did not believe it at the time that's for sure as I felt like a slug that had been shriveled on concrete after a punky kid dumped salt on me.
It was 5:45 p.m. and finally the IV beeped that the transfusion was over. Sunshine came and took my temp - 100.2. She was just as upset as I was knowing that this was not good. I begged that they didn't have to keep me. Luckily, it was cleared that I could go home with instructions to take my temp that night again before bed. If I spiked a fever I had to call the on-call fellow and would likely have to come back to Yale.
On the more than one-hour drive home in the rain all I wanted was pepperoni pizza. I have not eaten pepperoni in years. My dad obliged when we called him from the car and by the time we arrived home, there he was at my house with a piping hot one from Little City.
As tired as I was, it was hard to sleep with the two prongs sticking out of my neck and the worry that if I turned the wrong way, the whole catheter would yank out. I think both Craig and I slept with one eye open. But good news was that I was fever-less.
On Tuesday it was back to Yale and with all the pre-work that was done on Monday, it was finally time to actually collect my stem cells (after a transfusion of one more unit of red blood cells). On this day, morning blood work showed that my CD-34 indicator had risen from 20 to 103 overnight. This was a great sign and showed promise that I would easily have enough to collect in likely just one day on the machine.
My nurse was Winsome, the same woman who had examined my veins the day before, a wickedly smart woman with an easy and contagious laugh and a musical Caribbean accent. She answered myriad questions that Craig and I asked with well explained answers and gave us a much greater understanding of how the whole process worked. She also had fun teasing Craig (it seems all the nurses do), worried that he wouldn't be able to handle all the blood and the set-up as he kept getting all smily and giggling. She jokingly threatened to kick him out for fear of him making me nervous. But she quickly learned that Craig is always smiling and laughing – that's just how he rolls. And that he has a deep fascination of all the gadgets, needles, tubes, dressings, drugs involved in all of this.
After she got me all hooked up to the apheresis machine, she said from that point on it would be like watching paint dry. To us, it was fascinating. And, I got two blankets out of the warming oven, plus another delicious boxed lunch on the house. Just as Kathryn said, I did feel like a demi-God with so much more energy from the transfusions.
Turns out, the CD-34 predictor was right. In just four hours, they were able to collect from me 12 million stem cells to be frozen for my later use. This is much more than I'll even need, which is 7.5-10 million, to have enough to recover from the chemo. I was so relieved and feel confident that this is a sign of more good things to come from this whole stem cell transplant process.
Yesterday, it was back to Yale, but this time I was excited because I was going there to get the Quinton catheter taken out. The doctor took me into a private room and with lots of disinfecting ointment, a clip of the sutures, and a swift yank while I had to "hold my breath and bear down like I was having a bowel movement," my jugular was once again free. The doc immediately jammed gauze backed by his two strong fingers into the hole in my neck and held the pressure for a solid five minutes to stop the bleeding then dressed it in more thick gauze and clear covering. Being able to sleep on my right side again without the worry of waking up in a pool of my own blood last night was heaven.
Step one is over and I couldn't be happier with the results.
Craig videotaped me explaining the whole stem cell collection process in the embedded You Tube video. It is much easier to describe with a visual as the whole collection is not necessarily an intuitive process or one that's easy to wrap your brain around. Hopefully this is mildly helpful: