Friday, September 18, 2009

Round 1, Cycle 1 - the prologue

Finally I feel clear headed enough to talk about my experiences last week. I was on a huge roller coaster from beginning to end, and not just due to the medicine.

Jim and I arrived bright and early at Dr. Olencki's office on the 10th, for bloodwork - including placing of the port needles, yay - and a consult with Dr. O. Dr. O was concerned that I had never had a 12 hour fasting lipid profile - honestly, they had written me a script for the test and I totally forgot to do it. But everything else was in order... except... he was puzzled by the results of the CT scans that they did in Columbus on 9/3. What was puzzling these experts? Well, neither Dr. O or the radiologist could see any liver mets on these scans. So, like, are you saying the liver is clean? Jim and I were dumbfounded. It all got very strange and confusing at this point, as the doctor talked about the CTs that found the mets in July, the MRI I had in Cleveland in July, and the CTs from Columbus. Throughout all of this, the ovarian mass remained; no question about that one. It was decided that I go to the hospital to be admitted and have an abdominal MRI to get yet another look at my liver. "We have to make sure there is disease to be fighting before administering treatment." Right on! Of course he also muttered something like "I'm sure these are liver mets". You can guess where my thoughts were focused at this point. Maybe the ovary thing is... something else. Ovarian cancer would be Bad, but if the ovary is the only met spot, then maybe we go for surgery after all? Both Jim's and my minds were reeling.

We made our way over to The James and went to admitting. I found a bit of amusement in a situation there. A trio of elderly folks walked in to admitting just ahead of us; I think a married couple and another woman with them. The man appeared to be the patient. The receptionist told them it would be a while before a bed would be ready. How long a while? She didn't know, of course. But in hospital time, a while means a WAY LONG TIME usually, in this case, like go have lunch and come back, and don't hurry. For those of you unfamiliar, there are of course plenty of beds in hospitals here in the US - however, they can't put patients into those empty beds until they have proper nursing and support staffing for that patient. So sometimes they have to juggle people and floors and the patient has to wait. Our situation was different - they have a certain number of slots on the floor where they do IL-2 and so mine was just waiting for me, so to speak.

We checked in after the elderly trio made their way to the lobby chairs, and then we were taken back to register, with the same nice young man who registered me when I had my port placed; it was nice to see a familiar face. We came back out to the lobby, where the elderly trio were still getting themselves situated in the chairs. Within about 5-10 min the registration man came out and told me my room was ready. Oh, man, I could feel the elderly wife's glare of death on me as Jim and I left the lobby. I think she thought we 'line jumped' them somehow! Hey lady, this isn't Applebee's and I am betting your husband doesn't want my "table".

Another cool thing - when you are admitted, the reg/admit person takes you to your floor! We walked through the corridors to The James and up to my new home, Seven James. I quickly learned that I had not yet scored a private room. Instead I had a roommate who was recovering from a surgical procedure. Jim and I got somewhat settled in, to see what was to happen next. I got to meet some of the staff, all of whom were warm and friendly, answered a lot of questions, and were told that I could be taken to MRI at any time, so from this point forward (about 11:15 AM) I was classified as NPO (nothing to eat or drink by mouth). I'd had a bagel at Ellen's that morning but nothing else, being too nervous to eat. I also learned that while I had two needles in my fancy-schmancy new double lumen port, that neither of those was a Power Port needle, which is necessary if the port is to be used to push IV contrast. No worries though, I wasn't getting contrast this time. It as also decided that they would draw blood to test for ovarian cancer markers. This made me wonder, why didn't they do that in Cleveland in July? Who knows; I think that everyone was so convinced that we were dealing with RCC that they didn't see the point.

As we sat and waited, I kept telling myself alternately that they would find the mets on the MRI and we'd get started with IL-2, or that we'd find no mets and maybe I could go home. You can guess which option was more popular in my head. Jim was sleepy so he dozed; I did a little too, though there was a lot of commotion between getting me admitted and people coming in to see my roommate. At some point in the afternoon we were told that the MRI was getting slammed with emergency scans, so I wouldn't be going down until the evening. Starting to gt a little hungry, but I had an idea. I asked the NP (nurse practitioner) if they could collect blood for the 12 hour fasting lipid profile when they did my evening draw. This idea was met with enthusiasm - we'll make the best of a tough situation. Then at about 5:30 PM, they came to take me to MRI, earlier than expected. Good news though.

As the transporter wheeled me to MRI, we chatted and I learned that he is a student at OSU in molecular genetics. Aha, he seemed very different from the transporters I have met throughout my many hospital stays. And I discovered something - that at this teaching hospital, connected to a university, lots of people work there for the free tuition benefit. Genius plan! It seemed like everyone was in nursing school or NP school. Very cool.

At MRI I had to cool my heels for a bit; they put my wheelchair into a bedspace, then a tech pulled the curtain in front of me, saying, "we have a critical case coming in, and so for your privacy and theirs, we're pulling the curtain." Of course all I wanted to do was to peek out then, but I stayed put, ever the compliant patient. Finally they pulled the curtain back and the tech asked me which arm was better for an IV. What IV? I was told no contrast! Didn't matter, as the radiologist overruled the oncologist on the issue of contrast. And so no Power Port needle = get stuck in the arm. The tech who did the stick and scan got me on the first try and bandaged it tightly afterward, but I still ended up with a lovely bruise. *sigh* Finally I got back to the room where a dinner tray was waiting for me. As I prepared to eat my first solid food in 12 hours, Jim reminded me of the darn fasting lipid. So I called my nurse, who decided 11.5 hours was close enough, and took my blood samples so I could eat. At some point we were told that we would not have results on the MRI until the morning, so I sent Jim home to sleep at Ellen and Jay's. He offered to stay with me but it was too cramped in the room and since he was driving home the next day, I wanted him to get a good night of rest. I actually got a decent night of sleep myself.

Friday morning and the wait was back on. The first wait was for Jim, who had trouble getting to the hospital, and our newish GPS, whose voice I have named Bob, was very unhelpful. Then waited for breakfast - my roommate and I chatted throughout the morning and realized that neither of us had received it. For some reason, trays weren't delivered to Seven until about 9:15 or so... weird. Then the wait for results continued. Oh, and Gyn-Onc was sent in to see me. Prior them coming, the NP told me that the blood results were back and that my markers were normal. THAT was a huge relief - nobody wants to deal with one cancer, much less two, at one time, though it does happen. The Gyn resident came in to do a quick pelvic exam. I got as far as taking off my pajama bottoms when the attending Gyn and entourage arrived. Lovely! So I got to meet with him with the sheets pulled up while 3 women stared at me. At this point Jim had slipped downstairs for lunch so I was alone. The doctor explained that between the normal blood markers, and the views of the ovarian mass from the last week's CTs and my Cleveland tests, he felt very certain that I do NOT have ovarian cancer and that the mass is in fact likely RCC. I asked him if he'd seen the MRI results from the night before and he went looking for them. Turned out that they didn't scan my pelvis, just the abdomen, which made me really angry and got me upset and crying. The Gyn doctor returned to talk to me and thought I was crying because the pelvic exam had hurt... as if! I told him how angry and frustrated I was about the MRI because I had asked the fellow doctor the day before if they would be imaging the ovary and I understood him to say yes. The Gyn told me that it was okay, because he wouldn't have seen anything on the last MRI to change his mind. Good to know, but I was beyond stressed by this point. Jim came back and I cried on his shoulder a bit. Finally, finally, 30 hours after being admitted, I was told that yes, the MRI results were in, and yes, they showed 3 lesions on my liver. Somewhere along the line someone said "we see 3 rather than 4 from before" or something like that, which I didn't understand at all but let go for now.

I had of course missed the 2:00PM dose of IL-2 and so would get my first dose at 10:00PM. Jim left to head home and pick up the girls from his mom's house, so he never saw me get a dose; weird how that worked out. They did find me another room and while I waited for them to move me, Ellen and Jay came to visit. They got to help move my stuff to the new, private room, which was really nice - bigger than the usual room. We visited some and they went home, promising to return early on Saturday. They had to come early because OSU was playing USC in a night game on campus, which meant traffic and people would be crazy.

To be continued...


Lucy Simkin said...

G'day Lizzy,
What a rollercoaster ride for you, unbelievable! You do have to wonder about the line of communication in these cases and how easily there can be a mix up. No different in the land of Oz I can tell you. Been checking your blog almost every day, I had no idea you were so rude always pushing your way into my thoughts and lately whenever I see my Mum or sisters do I get a hello? no, I get " so have you heard from Liz?" So there you go, we are all thinking of you. By the way, what exactly did the lovely Carly get up to while no-one was watching and I hear she is considering an apprenticeship in hairdressing. Did laugh though because each of my little darlings have tried their hand at hair design with some very interesting results!
Hang in there mate, talk soon xxxxxxx Berni and co.

Deborah said...

What an ordeal! I'm amazed you can write it all up, and that you were able to keep your sense of humor in something that is so beyond stressful.

Joannah said...

Wow! You have documented this so well that I feel like I was there.

I love your imagined response to the elderly couple. LOL!

I hope you will have a great weekend.