Saturday, November 28, 2009

Getting ready

So, when you're about to go on vacation, what do you do? You pack, which of course involves doing lots and lots of laundry. You clean up around the house, you make lists of things not to forget to take or do. You go to the post office to request to have your mail held, you ask your neighbor to bring in your paper, you arrange to have them put out your trash for you. You make sure the dogs have a place at the kennel and that their things are packed up. And lots, lots more...

And I have done most of these things, in preparation for our trip to Columbus. So how come I won't get to have fun while I am there? If I am preparing for this out of town trip, shouldn't I get to at least enjoy it??? Okay, so it's not a pleasurable experience. But having another set of scans in two months that read "stable" or better, will be. So I guess we'll go after all.

I've been trying to make up an itinerary for the girls' grandparents, who will be hosting them for both weeks we're in C'bus. I had Rebecca review the cafeteria menu so we know which days she'll buy and which days she'll pack. Of course, payday falls on Monday the 30th. I need to figure out what needs to be paid from this paycheck so that I can have Jim do that from his laptop... it is usually something I do on payday or right after but I know I won't feel up to it. And then I will have to do it again for the next pay, which falls during my second cycle of treatment. That one will be a little bit tricker, because while Jim's check is the same, mine will be cut by 30%. We have a good short term disability plan at work; it pays 70% of your salary after an initial waiting period of one week, which you use your PTO (paid time off - all of our time is in one pot that we use for vacation, personal, sick and waiting period days) to cover. Luckily for me, this leave is considered an extension of my leave in September, so I don't have a 40 work hour waiting period to fulfill again. But... I also no longer have a nice bank of unused PTO to bridge the gap between the STD pay and full pay. I used to have a nice balance in my PTO bank all the time. During both of my maternity leaves, I was able to use PTO to bridge most of my unpaid time, even for the FMLA weeks I took after the medical part of my leave ended. But then I used a week plus bridging in August of last year when the first met was resected. Then in February I used another week... I was lucky to be able to come back to work after only a week but there went 40 hours. I took a week in the spring and one in the summer as planned, to spend time with Jim and the girls. But then all the trips to Columbus for pre-IL-2 testing ate up a lot of what was left, and I used 40 hours for that waiting period when I first entered the hospital. The rest of it went to bridge me but it wasn't much and I had one seriously sad paycheck. Since I was back to work for just about 3 full pay periods, I was able to build up a tiny cushion, but had to use 8 hours of it for Thanksgiving, and the rest will go toward bridging again. Christmas and probably New Year's Day will fall while I'm out. Since those are designated holidays, guess what? I'm supposed to take PTO for them. So there's two more holes in the payment schedule. *sigh* It's certainly not the end of the world, and we'll figure a way through it. I would probably be a bit less stressed about it if we weren't facing the end of pay for Jim at the end of January, should he still be jobless at that point. I keep saying that January is when he will find a new job; that God, or fate, or whatever, planned this so that he could come back to Columbus with me, but my confidence in that assertion is still a bit shaky.

On the other hand, this treatment is supposed to help lengthen my life and keep it at the quality of life I have been enjoying, that is, fully active and without any medical restriction. And that, my friends, will be worth any hand-wringing about paying some bills.

Wednesday, November 25, 2009

Act Two

I headed down to the state capital last week for my 8-week post HDIL-2 scans. I was scheduled to be there for 3 days, since I needed to have 3 MRIs and the radiology folks said that my kidney could only handle one dose of Gadolinium per day. While not thrilled about having to be away for 3 days, (and I wasn't about to commute there and back more than once) I planned to make the best of it, staying at the Frank B&B (my friend Ellen's house) and using a laptop to work from her house. That way I could keep up at work and not have to use up the precious little paid time off I've earned since returning to work. The plan was to drive down on Monday evening. Late Monday afternoon I got a call from a nurse at Dr. Olencki's office. She wanted to know if I had wanted to schedule my appointments this way. After a bit of discussion, it was determined that I could have been hydrated via IV so that I could have multiple doses of Gadolinium... but trying to reschedule the appointments to be together would probably be impossible at this late date. The nurse promised to talk to Dr. O and call me back. The decision was made that a pelvic MRI, scheduled for Thursday, could be changed to a CT scan, which could be scheduled concurrently with the chest CT I was already having on Tuesday. So I was able to shave a day off the trip.

On Tuesday I had the MRI of the brain first. Afterward I was sent out to the waiting area to drink my berry smoothies before my CT scans. The room was full of people of all ages, from elderly folks to families with children. A TV on the wall had been broadcasting Dr. Phil when I went in for the MRI. Now Oprah was just starting. And she was interviewing Jenna Jameson. Talk about uncomfortable silences in the waiting room... it was pretty funny, though. She and Oprah discussed her book, titled "How to Make Love Like a Porn Star" and her life. There was one family I was embarrassed for, as included in their group were two tween kids there. However, they were siting basically under the TV and seemed to be ignoring the TV altogether. I wasn't all that interested (and she was pretty orange-y toned, not sure if that was from being over-faketanned, or from the TV) so I read magazines instead.

I came back the next day for an abdominal MRI, and the techs poked my veins several times to try to get an IV line before finally deciding to use my Power Port. Finally! It got it full use, LOL.

One of the techs told me there should be results on Friday. On Friday afternoon I called to see if they knew anything. I talked to one of the NPs who read what she could from the reports, but said that Dr. O hadn't weighed in on them yet, nor was she able to locate him. We talked about the fact that I wanted to know as soon as possible if I was going to be traveling back to Columbus. She promised to call me on Monday. On Monday, I wanted to call her first thing, but held off. Finally mid-afternoon I called. The woman who answered said to me somewhat snottily, "she's been trying to call you all day!" Odd, that... my cell (which I had given her the number for) was on and working all day. Plus I know they had my home and work numbers. The woman took my cell number again and told me she would give the NP the message. I was pretty angry at this point... feeling like I was being made out as the guilty party by the woman on the phone. When I got home I checked the answering machine in case there was a message there that Jim hadn't heard, but there wasn't.

On Tuesday morning, we got the girls ready to go to day care; Rebecca didn't have school but was going to day care for a "play day" mainly because we had to go to her school for her parent-teacher conference. I picked up my purse and pulled out my cell, where I saw that I had two voice mails. Both were from Monday evening, one from the NP and one from Dr. O. DAMN! I have a new phone and had changed the ringtone to beeps because the tone I had been using annoyed me and I haven't had a chance to download something I would like. Dr. O said he would try to call me first thing in the morning.

Jim and I went to the conference, where I got to meet both of R's teachers. She has two teachers, who job share; one works until lunch and the other takes the afternoon classes. The conference went wonderfully; they had no weaknesses to discuss but lots of praise for our girl. We were both very proud. I crack up when talking to teachers though, because they always talk about how mature R is, and never seem to believe that she can be a very silly childish nut at home. These teachers did believe it and laughed. I'm glad she saves her silliness for at home. As we were wrapping things up my cell rang so I went out to the corridor to take the call.

It was Dr. O, as promised. He told me that all of my mets are stable, so there was no growth of any of them, and that there were no new nodules. When I had talked with the NP, she had mentioned that the abdominal MRI mentioned a nodule in a different region of my liver, but that the radiologist interpreting the MRI noted that the region the nodule was in may not have been scanned in September. There is something in my mesentery, which the pelvic CT mentioned as having "slight growth". The NP had told me not to be concerned since Dr. O had not mentioned this to me previously, and likely it was something he was unconcerned about. That turned out to be the case. He mentioned it to me but said something about some kind of blood cells likely causing the growth, so he was disregarding it as a trouble spot. I didn't really catch what he said in full, so when we see him on Monday I plan to ask again and write everything down. At any rate, he told me that he wants to see what another round of IL-2 will do for me. We agreed to see each other on Monday, and signed off.

Wow. When I had first talked to the NP, I was happy that there was no mention of a lot of new growth, and that it sounded like everything was stable. A part of me was disappointed, hoping for shrinkage or the magic words "complete response", as remote as that possibility can be, especially after just one round. But the more I thought about it, the better I felt. Lots of people get IL-2 and have growth continue. I didn't. Right now here is what I am picturing, which I told to Rebecca this morning:

The first round of IL-2 has knocked the "spots" to the ground, off their feet. They are dazed and confused so they can't eat or grow. Now we're going to send in a bunch more T-cells to smother the spots and make sure there are no tiny cancer cells floating around! I told R that I can't promise anything but that is what I hope will happen. She liked that explanation and I hope it will help ease her pain at our leaving her and her sister for two one-week periods next month. I told the girls about it on Tuesday evening. Being just four, Carly just kind of brushed off the news and went about the business of playing. Rebecca, on the other hand, was reduced to tears. It's hard on all of us, and especially this time of year, but getting through this will make Christmas all the sweeter for us.

So the schedule is: Jim and I will go to Columbus on Sunday (11/29) and stay at the Frank B&B, so that we can be at Dr. O's office by 7:30 am. There the nurses will place the needles in my port and take blood, and I will meet with Dr. O. Then, as usual, we'll drive over to The James, get admitted and get a room. If we get settled in time, I'll be able to start with the 2pm infusion. The question in my mind is, will I start in a semi-private room and then move, like I have done the other two times? Probably, though I am hoping not. I want to get settled while I feel good, put up my photos and inspirational signs that I made last time but never put up... not that I would have really seen them in my fog last time. But, whatever will be, will be, and my sweetie will be with me so he can tape up posters for me. :-)

I should be home sometime that following weekend, and recover at home for the next week. Then we will return to Columbus on 12/13 and repeat the cycle. Barring any serious complications, we should be home the weekend before Christmas. I've done most of our holiday shopping, and am hoping to get it wrapped in the next couple of days, but still have more to do. Somehow what needs to get done, will get done, and I know that if I don't have energy to do some things, as long as I can communicate them to Jim, he will take care of them for me.

Tuesday, November 10, 2009

Bedside notes

Carly likes to climb into bed with Jim and me from time to time. Sometimes it will be several nights in a row, then she'll go a few weeks without a night time visit. When she was a toddler it was a pain because she would move around so much and end up perpendicular to us; she would be the only one sleeping comfortably on our king size bed.

On a recent Sunday morning, she came in shortly after dawn. It was the first morning after the time change so I think her bio-clock was a bit confused about the light peeking in from the edge of the blind on her bedroom window. We cuddled a little and fell back asleep, woke up and cuddled a bit more then dozed off again. When I awoke fully and sat up, I happened to look through the bedroom doorway. I could see Rebecca sitting at my computer desk in my office, writing on a square of paper from a memo pad I keep there. As I turned to get off the bed, I noticed two more squares of paper on my nightstand. As I picked them up, Rebecca walked in, gave me the paper she had just been writing on, and with a forlorn look, left the room. These are the notes she left:

I didn't know whether to cry, laugh or roll my eyes. So I did a little of all three, inwardly. To Rebecca I said that she can come and cuddle any time; I was cuddling with her sister because she had come into the bed. Rebecca doesn't visit us at night anymore - why would she when she has a full size bed to herself? But she now knows that she has a standing invitation.

Sunday, November 08, 2009

Weekends too short

Another busy one over with too soon, and too many of my plans unfinished... or unbegun!

On Saturday we attended an ice skating show, which was a benefit for the Scott Hamilton CARES initiative. Through CARES, many lives have been impacted positively through its 4th Angel mentoring program, which matches new cancer patients with survivors to provide information and the kind of moral support that only another cancer warrior can provide. They also fund research. Young researchers have a hard time getting funded because get funding, you have to have already gotten funding. It's kind of like the old employment conundrum - you need to have experience to be hired for the job you're applying for, but nobody will hire you to give you that experience. So CARES funds these new researchers, which gives them the credibility to successfully apply for additional grants. This is so important for all of us who are touched by cancer or who may find ourselves in that place in the future. The initiative's latest project is a new website,, to help patients and their loved ones through the chemo experience. What a great idea... and a resource that is definitely needed.

I have long been a fan of Scott Hamilton; my mom was a huge figure skating fan and I would watch events with her. When he was diagnosed with cancer I was really sad for him, and then really happy for him when he was declared cancer-free. I had not been to any of the previous shows, partly because I miss having my mom to share them with. But this year, it was announced that at age 51 and after over 5 years off the ice, Scott himself would be performing. So I got tickets for us and invited Jim's parents to come.

We all really enjoyed the show, even the girls, who have never really watched figure skating for any length of time. Scott did great on the ice - he did fall once but later did TWO back flips on the ice. Pretty damn good for any skater, much less someone of his age. When he spoke after the show, he talked about how he needed to get in shape to do this, as he had let himself get out of shape. He has two young sons, and he has decided to continue to work on maintaining and improving his health, and continuing to perform in the annual benefit. This was a good message for me to hear at this time. I have had in front of mind my need to get regular exercise. I really want to walk more, to the point of really getting some mileage in, and who knows, maybe someday even jogging or running. My dad would smile at that, since he was a distance runner who only took it up in his 40s because a coworker invited him to join a lunchtime running group at work. So I seriously need to make the time for some walking. I should be able to get in three weeks' worth before my possible return to Columbus; if I have to take a break from it for more IL-2, all the better; if not, then I will be getting in shape for whatever systemic therapy is next for me. I want to be the healthiest cancer patient I can be, so I need to cut out the excuses and get my butt moving.

So that was Saturday, enjoyable and inspirational. On our way out of the arena, I ran into my friend Deb and her family. I believe I have mentioned her here before... she was my supervisor for two periods of time, and has been a wonderful friend and mentor over the past almost 20 years. She is currently on long term leave from work because the breast cancer that invaded her brain two years ago is still growing, despite gamma knife surgery and two neurosurgeries, as well as radiation treatments and a brief time on a chemo trial that didn't help her and made her too sick to continue. The cancer has now spread to her abdomen and her husband told me this week that she has something in her arm that they will radiate. She was at the show on Saturday, even though in a wheelchair, with sunglasses on since her vision has been severely compromised by the brain tumor. But she gave me a big kiss and pronounced me 'fantastic' when I came up to see her. I am so sad for her and her family, and so very angry that this monstrous disease is taking her away from us. She is one of the very best people I have ever met, and she had a lot of life left to enjoy... having that cruelly taken away is beyond unfair. So for Deb I need to work harder on making myself as healthy and fit as possible, too. She has always been an inspiration to me, and I want to be worthy of her praise of me.

Today (Sunday) our little family took on a secret assignment, doing something I can't talk about now but will be able to by the end of the year. It's nothing huge or momentous, just something that I have wanted us to do for a while and finally got it going. We also did some errands and got home in the later part of the afternoon. I was determined to get the front flower bed cleaned out, and annuals pulled, while it was nice weather. And it was soooo nice today, temps near 70... I worked outside in walking shorts. The girls came out with me and were a big help - while I raked leaves, they pulled the dead flowers and Rebecca clipped the dead blossoms off our hydrangea. We then cleared leaves off our deck and I was able to get the cover on our patio set for the winter, all tied down and hopefully secure for the season. It was a great feeling to get it all done, but man I was tired afterward. Either I am really out of shape (yes!) or I am not yet at 100% recovery from the last IL-2 and resulting hyperthyroid episode... or perhaps a combination of the two. But no matter, it's a good kind of tired and the girls and I had fun while we worked.

Now it's time to start another week of work and obligations, then next week I'm off to Columbus to be radiated and magnetized, with the big reveal soon to follow... response to the IL-2. I want to know NOW so I can know what December will look like for me and the family. But I want my immune system to continue to do its magic if indeed that is what's happening, so I can wait another week so that we give it optimal time to work. I feel hopeful, but I know that statistics aren't in my favor, so I will be okay if I don't get good news. There are fortunately some choices now for a next step, something that couldn't be said just five or so years ago for RCC. But with a bit of luck, maybe I won't need to make any of those choices.

Tuesday, November 03, 2009

What a weekend...

It was a whirlwind of activity this past weekend at our house. On Friday night the girls were invited to a Halloween party. Jim and I took the opportunity to go out to eat by ourselves. I had used a serious discount code on for a nearby restaurant that we'd never tried... I got a $25 certificate for $2! We really liked the food and will go back even without a GC. The only annoyance was the noise level... being Friday they were doing a perch dinner as their special and I think every older couple on the west shore was there! For dessert we brought home a slice of killer chocolate cake, which we all shared... very rich and fudgy.

On Saturday morning we went to our niece's birthday party - she is an actual Halloween baby. The party was held in a meeting room at a library close to their house. The kids had a lot of fun and the family got a chance to catch up and chat. After the party we relaxed a bit, then headed to a neighbor's house for our little development's Halloween parade. One of the families used to organize this event each year, along with a 4th of July parade, but now that their kids are teenagers, their family has "outgrown" the event. So another family, one with small kids, stepped in to organize. We all trekked around the 1/2 mile block, kids in their Halloween regalia, back to the organizer's house. There we all went inside for pizza and snacks. It was a perfect way to get some actual food into the kids before Trick or Treat began. The parade was at 4 PM, and ToT started at 6, so we had just a little time at home to finish getting ready.

And then we were off... I walked with the girls while Jim handed out treats. We went farther than we ever have - to the corner on the north end of our street (we are about 12 houses down) and most of the way to the east end. We probably would have covered the whole street if it were up to Rebecca, but Carly was getting tired and frankly, so was I. I weighed one of their bags at home and it was almost 3 1/2 lb... way too much as it is! There was about a half hour of 'official' ToT time so Carly stayed at the door to assist Jim while Rebecca sat at the kitchen table organizing her loot. She was proud of herself - one of the neighbors handed her a bag of Skittles, while asking her if she likes Skittles. She doesn't but very happily and politely said yes and accepted them. (Mommy likes Skittles so all is not lost!)

On Sunday Jim and I had hair appointments - our salon is a long drive, but we keep going there because we can't quit our stylist (Hi Kim!). From there, Jim dropped us off at the party center where we were meeting Grandma for the American Girl fashion show. (It was a charity event for the cancer center at the competing hospital system here in Cleveland... shhh... Though if these funds help them to find some cures, we all benefit.) Last year Rebecca and I went with Grandma to the show; this year she decided Carly was big enough to go. We had a nice time there, though both girls were disappointed that we didn't win any raffle prizes. (Last year Rebecca was lucky enough to win a Bitty Baby with a ton of stuff.) One of the new dolls this year is named Rebecca Rubin and our Rebecca really wants her. They were raffling two of them at the show, then had a quickie raffle during intermission for another, but no luck. Grandma advised R to add the doll to her Christmas list.

However, it won't matter because a brand new Rebecca Rubin is sitting at my sister's house waiting for Becky's birthday! This year R's birthday falls on Thanksgiving Day. Last year we celebrated her birthday at Thanksgiving dinner at Jim's brother's house. It was fun and she enjoyed the dual celebration. She told us last year that she'd like to celebrate her birthday at Turkey Day again. However, times have changed. We had a birthday party for Carly last month at Chuck E Cheese and let her invite her classmates. We'd done the same when Rebecca was four so it worked out nicely. Everyone had a good time at the party, except Rebecca, when she stopped playing games and realized that her sister was the center of attention. It didn't help matters that some of the gifts Carly received were things Rebecca herself wants. There was much wailing and gnashing of teeth on her part for a couple of days after the party... mostly in the vein of "she gets everything and I get nothing." Therefore, Rebecca decided that she wants a family party separate from the holiday, and that she wants to have it at Donato's pizza, where they have a party room we used last year for Carly's family party. So the girls and I went up the street to our local Donato's and reserved the party room. I had to pick either the weekend before or after her birthday; the weekend after is not feasible if I will be returning to Columbus for round 2 of IL-2. So we picked the earlier weekend. I told her we'd get some balloons, etc. to decorate. And today she called me at work (she had the day off from school, ostensibly for Teacher development day but really because it's Election Day I think) to ask if I would help her to make a birthday crown for her party. Carly got an inflatable crown at CEC so of course sissie has to have a crown too. My dear, dear girl...

Both of them are so precocious and crack me up all the time, when they aren't bickering and smacking each other, that is. Seriously, I need to keep a notebook or recorder with me to log these gems so I don't forget them!