Day +9

Yesterday I had an all-star cast of caregivers which is exactly what I needed. I had the same nurse for 12 hours and her energy never faded throughout the shift. She was efficient, friendly, and genuinely happy. She was always smiling and humming anytime she was in the room. It was exactly what I needed as I was very tired and lethargic as it's been many, many days since a good night's sleep (as I write at 4 a.m. ...), but her energy was contagious. It's all about attitude. Another nurse who I had my first day was back to help out with my transfusion and I love talking to her because she has been working with stem cell transplant patients forever and is incredibly knowledgeable about it all. She helped me more fully understand what is happening in my body at this point in the process. One of my favorite PCAs was back that always calls me Miss Diamond. And, even the woman that transported me to a CT Scan was so talkative and friendly.

It was a busy morning. I received another transfusion of platelets and a repletion of magnesium. They also drew yet another set of blood cultures because of a fever the night before. Again it took three nurses to pull from my arm vein. Now it's just comical. I just look away and focus deeply on my breathing.

Unfortunately I still had a few fevers. I'm hovering around 100 and got up to 101.3 at about 5pm. All the blood cultures keep coming back negative for any viral or bacterial infection, which is good. Dr. Cooper ordered a CT Scan yesterday to take a closer look at my chest and upper abdomen to see if there is anything going on there as I've had persistent dry coughing spasms especially at night and in the morning, but that's been happening for weeks. Preliminary results showed nothing that would be causing a fever and revealed that my lungs look nice and clear – also very assuring.

My white blood cells are just about fully recovered now so they are thinking that if I did have an infection, my body would be strong enough to fight it. Therefore they have stopped the IV antibiotics and I am just continuing on the oral ones –some of which I will for six months as part of the protocol.

Rather than an infection, what we are now looking at as the fever cause is an inflammatory response happening in my body due to all the action in my bone marrow and all of these young, vibrant cells taking over the tired, weak chemo-compromised ones. Sometimes as the cells graft together the body can mistake the new ones as invaders and react causing a fever. This is not uncommon in transplant patients.

As of yesterday evening's talk with Dr. Cooper, after the next fever we're going to try a course of steroids (prednisone) to calm my body down and reduce the flare-ups. If the fevers go away after that then the mystery is solved and I'm free to go home. I believe the steroids are a few day course so I don't expect to be going anywhere anytime soon ... .

With my contact precautions now lifted Craig and I were able to spend some time in the healing garden yesterday which was nice – and we can now hug instead of fist pump which is double nice. We spent the afternoon watching funny movies and doing a little napping.

Unfortunately I'm still hooked up to the IV pole for regular saline maintenance fluids. It's certainly getting old being tethered for nearly a week now and I'm going to ask the resident this morning if we can discontinue that too since I'm having no problem eating and drinking. If it means I have to drink 18 pitchers of water a day I'll do it if it means I don't have to lug this thing around with me. My taste is certainly not fully recovered, but it's much improved and therefore so is my appetite. I'm told it could take weeks for my tongue to react normally again to flavors.

It's really not so bad here though. The room is so spacious, I have my own bathroom, shower, and fridge, and I have a couch and a recliner so I don't have to be in bed all of the time. What I love most is the view I lucked out with. I can see all the way to Sleeping Giant mountain with so many lush, green trees and a beautiful red rock formation to marvel at. Last night I could see the bright lights of a night game in a baseball stadium and that made me smile. The night before I witnessed an awesome lightning display – full sky to mountain strikes. I've never seen a thunderstorm so vivid. My view is to the west so I've caught breathtaking sunsets every single night.

I'm happy to have a new plan of action and hoping that these steroids do the trick and I can bust out and take a long, deep sleep in my own bed – after a good tennis ball fetch session with Sammy of course.

Quick Update

I will write in more detail, hopefully soon. I just have not had the energy as of yet.

The stem cell transplant (day 0) went smoothly and I have been recovering since. Not unexpected, I was running a fever in the clinic on Friday and was admitted as an inpatient at Smilow. I've received some blood transfusions and have been getting Neupogen shots every day to help my blood counts recover later this week.

I am very exhausted, not able to eat much, and not able to have visitors besides my immediate caregivers (Craig and the 'rents) or leave the room. My blood counts are nonexistent so so is my pep. However, I am very positive and hopeful for a full recovery. It is anticipated that I'll start to make a turn around on Wednesday (Day +8). Until then, I'm digging deeper and deeper and keeping my focus on a healthy, new start.

Thanks for all the positive vibes and support.

In Flux: Cancer or No Cancer?

Getting a phone call from your oncologist on your office phone in the middle of the day is a little unsettling. Getting the call the day before you have a scheduled appointment with him to go over your PET-CT Scan results is a bit more worrisome. When you pick up and he tells you he'd like to meet with you to go over things ... and that you might want to bring along your husband or mom, that's really not a good sign.

I was expecting to receive the results of my first post-treatment PET-CT Scan on Friday, the 13th - "boldly" (in the words of my oncologist) scheduled on this superstitiously day of oddities. However, I got the news a day early after Dr. Dailey found some concerning results.

He called me at work. For a fleeting moment I thought (hoped) that maybe he wanted to alert me to something happening at the cancer center that I should include in the hospital newsletter. That faded quickly when he told me that he got my scan results back and had shared them with several colleagues in the cancer center, an expert pathologist, a noted thoracic surgeon at the hospital, etc. I know that you don't go around displaying perfectly clear scans across the hospital.

The long and short of it is that there is what is called a "hot spot" that appeared on my scan. It shows up in my anterior mediastinal tract (between my lungs) more toward my heart. "Hot spots" are how oncologists find if and where cancer is lurking in your body. I was "hot spotting" all over the place in my initial scan ... "like a Christmas tree" I believe the wording was. The good news is that this particular "hot spot" is only a centimeter large and it is the ONLY area of activity on the entire scan. The even better news is that the probability of showing a false positive on these types of scans is very high. The PET scan shows anywhere that there is high metabolic activity - something that cancer cells display, but also something that other tissue inflammation or swollen lymph nodes (without cancer activity) can display.

The area is too small to be able to perform a successful needle biopsy to pull out the tissue to test it in a minimally invasive way. The only way to know definitively if it is in fact rogue Hodgkin's cells that were able to withstand the 12 ABVD treatments would be to undergo a surgical biopsy. Because of the small size of the area in question and its close proximity to my heart and major vessels and the need to go through my chest cavity, the surgery carries quite a risk. My oncologist and the several other physicians across a wide variety of practices that he consulted agreed that surgery should be avoided until we have a clearer picture of the likelihood of this actually being the start of a Hodgkin's recurrence.

Naturally, this was not the news that I wanted to hear. Luckily, Craig was there with me. We met at the Avon office - there was no one else there but us and my doc - it was so intimate that he wasn't even wearing his typical white lab coat. It felt like meeting with an old friend who unfortunately was delivering what could be some very bad news. It was eerily dark and quiet except for the bright fluorescent lights of the room that we were in. It was late afternoon and Dr. Dailey took the time to meet with us, explain everything in detail, and answer, mostly Craig's, many questions as I just kind of sat there in shock. It took me back to my first day of chemo when everyone around me just sounded like the parents on the phone in Charlie Brown - "wah, wah wahhhh."

We are all hopeful that it is nothing. I am still fighting this upper respiratory cold/cough that makes me sound like someone on the other end of a 1-900 number. We're hoping that that might have something to do with the hot spot. That the infection could be causing the inflammation in my chest, causing it to light up with the diodes. However, I am so lucky that I have a doctor that takes things seriously and is looking at this scan thoughtfully and carefully. As much as he apologized for not being able to give the "all clear" and schedule a date for me to get this damn port removed that he knows I am anxious about, he told me that he just couldn't comfortably say: "Ah, it's nothing. We'll see you in a year."

So, the plan of attack is get me healthy - get this bug out of my system. I'm now on a new antibiotic, a 10-day course and am continuing with the prescription cough medicine. I'm trying to get lots of rest, maintain my healthy diet and keep up with the yoga and walking as much as I can. The hope is that by doing this, on the next scan, this little hot spot won't rear its ugly little head.

Monday I go in to get my port injected with a type of solution that will hopefully break up any kind of fibrous tissue that might be causing a blockage that is not allowing for my blood return as God forbid, I may be needing to use this thing a lot again. Then Tuesday I have a detailed CAT Scan which is going to take fine slice pictures of the area in question to try to get some better clues as to what it may be. Then, in 6-8 weeks I enter the narrow tunnel for another PET-CT Scan. If this reveals that the spot is still there (or even worse, has grown), then it's time to slice me open to get in there and biopsy a good chunk of the tissue. If it is cancerous, the next step is a high-dose chemotherapy regimen called "ICE" then onto an analogous stem cell transplant with a chemo cocktail of "BEAM" ... the science of all of that blew my mind and as Dr. Dailey assured us, to even think about it as this point is jumping the gun. Here's hoping for a false positive.

So now, my fate is awaiting the identity reveal of this one-centimeter hot spot. And, I won't know if I'm cancer-free anymore for another several weeks. What can I do but do everything to keep my mind off it, keep my body strong, and stay focused on the fact that it's got to be a fluke?