Wednesday, February 25, 2009

Recovering

Recovery is going pretty well so far, better than I had anticipated, given the doctor's warnings that I would have pain. I do have pain but it was far less on Tuesday than on Monday. I need to be careful to not overdo so that I don't relapse - I think I was a bit more active than I should have been on Tue so today (Wed) I will try to nap more. Becky will be home with me as she has strep again, poor baby... but hey, at least I'm already home so neither Jim nor I need to use a PTO day. Always looking for that silver lining!

We had supper at Jim's parents' house on Sunday night, and then the girls spent the night, as we needed to be at the hospital at 6AM on Monday. Becky was not the nervous wreck that she was when I had surgery in August - six months has made a difference in her maturity. She was of course sad and concerned but wasn't crying or clingy, which really helped me to feel better about the situation. She told me that Carly was upset because I wasn't going to sleep over at Grandma's with them. She explained to Carly about me going to the hospital, that I would probably be home when they got home from school on Monday, and that if I did have to stay overnight, that they would be able to talk to me on the phone. I was impressed because I had told B all of this myself, and hearing her using the same words to reassure Carly was very sweet. Even sweeter was this - B wanted to bring her camera to Grandma's because "I have pictures of you on there, Mommy, and I can show them to Carly to make her feel better." Oh my! That was very thoughtful. I'm sure it was self-serving too, so that Becky could "see" me herself, but to my mind, that just made it a better idea.

Monday morning came early and we made our way downtown, checking in just after 6. At the pre-op desk we were told that my surgeon had an emergency and so my time would likely be pushed back from 7:30 to 9:00. At first I thought the receptionist was going to tell me that my surgery was canceled; this news was nothing in comparison. We were told to have a seat in the waiting area, but then were taken back to pre-op pretty quickly. This was because pre-op didn't know about the delay, but that was okay for me because then I got to nap on the hospital bed instead of a waiting room chair. The nurses were all lovely and we all joked around. The research nurse from oncology came to make sure the surgical team knew to save Spot for her, and we talked for a while about kids and other random subjects. I was very relaxed when they came to get me around 9. They wheeled me to a faraway OR, a couple of buildings over, which was really strange.

Outside the OR I talked to the surgeon's resident, who got a purple marker to mark which side they were to operate on; I now have a big purple X and the words "this side" fading on my skin. (Later when I showed this to Carly, she asked if it was a tattoo!) He talked to me for a few minutes, walked away, then came back to say that they might not have remembered to tell me, but that it might be necessary for them to resect (remove) part of my bottom rib. Whaaaat? I immediately panicked, thinking that there must be cancer in the bone that nobody told me about. Fortunately that was not the case; he said that based on Spot's position, they might have to remove a bit of the rib to get to him, so that would contribute to my post-op pain. Oh, okay, I can deal with THAT.

The anesthesiologist and CRNA were both nice, and everyone got me settled in. I took a couple of breaths from the mask and the next thing I knew, I was done. And in pain. This was starting to feel like the nephrectomy, part two. I was in a recovery room for a couple of hours, and they were giving me Fentanyl through my IV line. It wasn't helping as much as I thought it should, though it did help some and interestingly, I would feel a little high after each push, so I can see why people might abuse this drug. I overheard the nurse saying "no way" was I an outpatient, and then I heard the word "nephrectomy" which meant she was misreading my chart. At one point I asked for more pain medication; the nurse told me that they could give it to me but then I'd have to wait another half hour before going back to the in-and-out center. I decided I could live with the pain for now, since I knew they'd give me percoset before discharging me. Finally I was wheeled back through the hospital and got to see Jim and his mom.

Jim told me that the surgery was a bit more involved than they'd anticipated. They didn't need to resect my rib but did need to go in between ribs to completely remove Spot. So, the surgeon said that if I wanted to stay overnight that would be fine with him. I did not want to do that because 1) the pain med they were pushing wasn't my favorite, 2) if I stayed overnight I'd likely have to wear the leg compression things, which make me sweat horribly, 3) I would likely get little sleep due to the constant interruptions and sounds that are part of being in the hospital.

After a bit I was allowed to sit up and try to use the bathroom. I really needed to go since they'd been giving me IV fluids all morning, and had not had a catheter during surgery. It turned out that after the initial pain of getting up, standing and walking actually felt good. After that I was allowed to get dressed and the nurse explained my discharge orders. So, I was free to go around 4pm. It felt great to get into the car with Jim and head home. All the emotion of the day spilled out at that point and I got in a good little cry as he made his way through the garage. So many people tell me that I am very brave, very strong, and that can be so, but sometimes I don't feel that at all and need to let it out. Poor Jim is usually the audience for this but he's a wonderful husband who just comforts me when it happens. I just hope he's letting his feelings out somewhere, for his own mental health.

I was very, very sore, and slept Monday night in a recliner, but I got 5 hours of uninterrupted sleep there, in peace and quiet. It was heavenly. And, I got to see my girls, and they got to see me, so we all rested easier.

I have an appointment next Tuesday to have my staples removed. I have just four staples, with no steri-strips, and I am allowed to shower. Amazing... My only restrictions are that I can't drive as long as I am taking a narcotic, and I can't lift more than 20 lb for a month. Next week I should get the pathology results. So, back to my usual waiting mode, though I don't expect any news other than that Spot is a recurrence of renal cell. My surgeon said the same thing Dr. Rini does; "it's renal cell carcinoma until proven otherwise." I chuckled at the fact that both of them use the same line, and told my coworkers that they must both have read this line in med school in the text about "what to say to not give your patient false hope". Certainly it's possible that Spot is something benign, but I can't let myself hope that seriously. I really counted on the last spot being benign and was crushed when it wasn't; I can't do that to myself again. At this point I am hoping that we don't find anything else growing anytime soon.

Tuesday, February 24, 2009

Home again, home again, jiggety jig

I was able to come home yesterday afternoon, which was thrilling! However, I'm not exactly doing any jigs, as those would be terribly painful right now.

The short story: Spot is gone, along with a bit of surrounding tissue. He was actually hiding behind a rib, so they had to go between the bottom two ribs to get to him. Prior to surgery, the resident had told me that they might have to resect part of the bottom rib to get where they needed to go, but in the end they didn't.
More later; I'm just up to get something to drink and take some percoset. The percoset might make for some fun posts later!

Friday, February 20, 2009

Cleared for takeoff

After a minor glitch - they forgot to put me in the scheduling system - I am confirmed for surgery on Monday morning, and cleared for anesthesia. Very important, that clearance, as I don't really want to be awake for the procedure. :-) I am first on the schedule, so I have to be at the hospital at 6AM. Other than having to get up at an ungodly hour, I am happy to be going in early. It's conceivable that I could be out of there by noon, resting in my own home soon after.

I also met with a research nurse from the cancer center and signed a consent for them to take part of Spot for research. With lots of new drugs in the pipeline, what they learn about RCC from the patient tumors is invaluable. I'm glad I can help; I don't know why anyone would decline to consent.

I'll have more to say about it afterward, I'm sure. Thanks to everyone for all of your continued prayers, PVs and support.

Friday, February 13, 2009

The game plan now

I saw the general surgeon today. Both he and his resident were super-nice; very laid-back and friendly but also very knowledgeable techically. The mass they are looking at (which I am now calling Spot) is just below my ribs on my left side but around the back. It's in the muscles, so closeish to the surface, though the surgeon can't feel it from the outside. As I was being "felt up" I mentioned that maybe my extra "fluff" made it more difficult. He scoffed at that notion and I felt relieved. He did say that the incision will be about 3-4 inches long; he didn't give an actual measurement but showed me with his fingers, so that is my estimate. He said that this is pretty much like an excisional biopsy; he felt that trying biopsy Spot first wouldn't serve a useful purpose since they would want to remove it in either case.

I asked him how long I will be hospitalized. "Oh, this will be outpatient," barring any complications, he replied. At that point I turned to Jim and said "I love this man!" Then I asked how long I would be out of work. He asked me what kind of work I do. "I sit at a computer all day." "Oh, well, then a few days to a week. If you feel a lot of pain that endures, we would keep you out longer but otherwise it's not necessary." Oh my... this is very good news indeed. I have decided that I want this thing, whatever it is, out of me. If it is RCC (very likely) I feel like it is a timebomb. Removing it certainly won't guarantee that I won't have another recurrence; in fact, the experts involved have been implying that I will have more recurrences. On the other hand, I don't need this Spot sending cancer cells out to other parts of my body.

So, I am scheduled for surgery on Monday, February 23.

If I am really only out a week, I also won't have to go on short term disability. Our plan has a one week waiting period so I'd be using a week of PTO in either case. So, if I come back in a week's time, I may still be able to take off the week in April that I wanted to spend with the girls. Fingers crossed that it all works out!

Dr. Rini had said that if I did have Spot removed, that he would want to discuss with me getting my consent to have a piece of it for research. Sure, why not? It would be good for Spot to end its life doing something useful in the name of science.

Monday, February 09, 2009

Casualty of Winter, or, Mother Nature is a mean mean b!t@#

This winter has seen the worst buildup in our gutters that we have ever experienced. We know that we need to replace them but hadn't gotten that far yet. As the snow has piled up, so has the ice risen far above the gutters. Our front door area is the worst, but we've had buildup in back too.

On Saturday night Jim was up later than I was. I came downstairs Sunday morning and could see he was not happy. When I asked what was up, he told me that he needed to tell me something. During the night, after I went to bed, he heard a loud crash on the back deck. Oh no, I thought, the ice has finally pulled the gutters down. It's not going to be any fun getting someone to come repair the gutters while we're still in melting mode. Jim told me that it wasn't the gutters, and that I needed to look out the back door.

I did so, and this is what I saw.




For those of you who have frequented my back deck, yes, this is the formerly lovely glass table that was the centerpiece of the patio set we bought in 2005. I picked that set out as a Mother's Day gift to myself, 3 days before my nephrectomy. And now it's a bunch of lovely shards on the wood, and will be ever so much fun to clean up once more of the snow and ice melt. I haven't looked closely at it but I assume it's a loss; it *might* be possible to order a new piece of glass for it, but I'm betting the frame is bent - how could it not be? In any case, not really the year I was planning any patio furniture purchases... sigh. It is funny though, that the lazy susan that was in the middle of the table appears to be intact. You can see it still circling the umbrella pole.

All in all, better to have lost the table than a gutter. But what a hassle nonethless!


Sunday, February 08, 2009

Crissy

Ok, Children of the 70's, do you remember the Crissy doll? She popped into my head today for some reason. We had the 1971 version, which you can see if you go here and scroll down a bit - she is the one with the orange maxi skirt and orange boots. I remember those boots being a pain to put on and take off. We also had her cousin Velvet.

Check out this commercial.

Thursday, February 05, 2009

Friday the Thirteenth

It's a strange day to be going to see a surgeon, yet that is what I will be doing. When last I checked in here, I was waiting to see if I was a candidate for ablation or radiosurgery to remove the mass in my side. I got a call last week from the office of the urologic surgeon who removed the mass in my abdomen in August; he was referring me to a general surgeon. Ablation is out of the picture, and the neurosurgeon and her colleagues did not think my situation was a good candidate for the gamma knife. It's interesting that Dr. Rini seemed against another surgical intervention, but now he is on board, so he must have changed his thinking somewhat.
I have no idea when or how this will happen, though I should have a lot more answers after next week. I have heard great things about the doctor I will be seeing, which makes me feel better about it. It's never a good time to have surgery, but I am particularly unhappy about this timing for a few reasons. For one, my direct supervisor is at home recovering from her brain surgery, and won't be back until (hopefully) early to mid-March. There is a ton of craziness going on at work, that I hate to dump off on others and also am scrambling to make some sense of as soon as possible. We have a new executive director who is functioning as direct supervisor for me and all of Deb's reports, and I felt bad telling him about this. But to his everlasting credit, when I told him that hopefully my leave and Deb's would not overlap by much, he immediately responded that I should not delay one nanosecond in taking care of myself. Of course that is the right answer, but not always the answer one gets in these situations, so it was gratifying.
Then, there's the whole idea of surgery, anesthesia, hospitalization (which I LOATHE), pain, recovery, etc etc etc to deal with. I know I can and will get through it, but man, I don't really want to have to. On the other hand, I want this thing out of me, so we can see what it is (they can't do a needle biopsy due to its proximity to the bowel) and then hopefully I can consider myself cancer free once again, for at least a short while. There is always a tiny chance that it's something benign, but I can't let myself focus on that notion because if I do, then hearing that it was actually RCC will be more devastating, like it was the last time.
My side and back actually hurt today, which of course freaks me out. This area hurts off and on, but when I talked to Dr. R about it he thought it was too sporadic to be from cancer. Today I think it might be sore because of my nearly 2 hour drive to work today. Argh... flipped cars all over the highways, with my main route being closed. Luckily I heard that in time to divert but still it took a long time to get to work. Apparently a lot of people thought that since the snow stopped yesterday, the road surface was dry today. You'd think they'd never heard of black ice. Idiots.
Of course my most heartfelt worry is for the girls. Becky flipped out the last time I was in the hospital, as it happened during the first week of her new school. I'm praying that six months of maturity and good conversation will help her feel more at ease. I'm also praying that I will not be away from home too long, as that will really help both girls feel better. We're not going to talk to them about the surgery until it's scheduled. This timing is also disappointing because I had planned to take a week off work during B's spring break week so the girls and I could have some fun. That is no longer a firm plan, depending on timing and how long I might be on medical leave. Not fair... I do know that in the scheme of things this is not huge, and I would rather have cancer removed from my body for sure, but I just feel sad and disappointed. At some point I will get over it but I'm not there just yet.