Friday, December 25, 2009

CTTS - Carly edition

 We had Christmas dinner at my sister's house.  All day Carly (age 4) barely ate anything, thanks to  her  extreme excitement over CHRISTMAS!!! I predicted to Jim that once we got home from my sister's, she would be very hungry.

Sure enough, a short time after we got home (about 8:30pm), she came into the kitchen and perused the refrigerator and pantry cabinet.  She then went into the laundry room, where we have a second fridge, mostly for when we have parties and for the additional freezer space.  There is also a shelving unit of canned goods and boxed goods in the laundry room.

Carly emerged from the laundry room and set a can of Progresso Chickarina (official soup of the Monahan girls) on the kitchen table, where Jim and I were sitting.  Jim warmed up the whole can up which he brought to the table in a large bowl, and dished out a small bowl.  She ate some, then went off to play with the CHRISTMAS!!! loot some more.  Later Rebecca came in looking for some sustenance and had a small bowl.  Then Carly returned and polished off the can.  Upon asking if she would like the soup reheated, I learned that she likes her soup cold, as in "no mom, this is cold but I like it that way.  I don't want you to heat it.  Next time we have soup, can you give it tome without heating it?  I prefer it cold."

As she finished eating, I complimented her, telling her that soup was a good choice since she hadn't eaten much today.  She replied, "I didn't see anything I wanted there (pointing to fridge) or there (pointing in direction of second fridge) So I said to myself, 'hey buddy, how about some soup?' "

I love my kids...

Wednesday, December 23, 2009

Asking for your help

I have a hand out asking for some financial help, folks. It's not for me, but for ACOR, about whom I have written before. ACOR sponsors a Kidney-Onc email list that I have belonged to since my diagnosis. At first I couldn't bear to read the messages there because they were all about treatments and drug side effects and even a couple of messages announcing the death of a member. I remained a member of the group but didn't have the emails sent to my box. As my disease progressed, I came back to the group and have become more active there. From the other list members, I have learned so much that will help Jim and me make the best decisions possible for any future treatment. And I have made friends there, people from all over the world who are smart, funny, inspiring, you name it. This list has been a lifeline not only to me but to many others. Kidney cancer isn't prevalent enough to have a lot of attention paid to it, lots of big fundraisers, etc. but the ACOR list is one place where a true community has been built. I'm willing to bet that there are folks on many of the other lists there for other cancers who would say the same.

This week all ACOR members got this message via email from ACOR's founder, Gilles Frydman. It is truly terrifying to think that the lists are in danger of closing down; the loss would be felt by so many, and it would be criminal to see all the hard work of Gilles and others slip away so quickly.

If you possibly can, please donate whatever you can to ACOR to help save it. If you live in the United States, it's important to note that ACOR is a recognized by the IRS as a 501(c)(3) nonprofit organization. So, you can add to your tax deductible charitable contributions for this year. And if finances don't allow you to donate before the end of the year, you can certainly donate in January and get a good start on your 2010 taxes. :-) There are so many places out there that could use our support and they are all worthy. But more and more, I have come in contact with these "little guys" who despite shoestring budgets and a lack of household name recognition, have done so much good for so many.  And just because they aren't a "name" charity, they don't get the support they deserve.

Thanks for your support. I know my fellow Kidney-Onc'ers will appreciate it too.

Sunday, December 20, 2009

Round two is history

and I feel like history right now, LOL. This time I made it through 6 doses before the side effects pulled me down. Each and every cycle is different... two weeks ago I had rigors almost every dose. This time I had none. This time, my blood pressure flirted with major decline but behaved; my creatinine flirted with outrageous heights but behaved, enough that I could have gone for seven or more doses but I just couldn't do it. And I will admit, being away from home and the girls this close to Christmas made it all the harder. We left for Columbus this time from a party at Jim's cousin's house on Sunday evening. For the first time, Carly sobbed at our departure. I know that the late hour and her fatigue from a busy day played into it but it was still heart wrenching to walk down the street to our car, listening to both of my babies cry while their grandparents and other family members consoled them. I of course cried too, telling Jim how guilty I felt for making my babies cry. Yes, it's temporary. Yes, it's for the best of reasons. That doesn't make it any easier to endure at the time though.

We were able to go home on Thursday, which was better than the hoped-for Friday and MUCH better than the dreaded/expected Saturday. Of course, we once again had to wait HOURS for the discharge papers to be finalized; I was told at lunch time that I'd be able to go home and we didn't head for the elevator until about 4PM. It was a rough ride home; this time I gained 15lb of fluid in about 3 days and my joints were screaming at me, from the major ones like knees and shoulders, to all of my fingers; I couldn't fully bend or flex those until Saturday. The water is coming off pretty quickly even without taking the Lasix that was prescribed; the joint soreness is much improved but I have a ways to go before I don't feel like a creaky body. My sister has Rheumatoid Arthritis; on Friday I told her that I think I can understand how she feels when her meds aren't working, and that I cry for her. It is beyond awful.

Oh, and this time I leave the hospital in a hyPOthyroid condition, with a prescription for Synthroid. I am not sure how long this is expected to last but will check into it. Like the hyperthyroid episode, it is a "good sign" because it's considered an immunological response. In those 6 doses they gave me over 500 million total t-cells; at least some of them have to be working, right? And they had better be... I am scheduled to go back to Columbus on Feb 1 for one day (yes, you read that right, ONE DAY) of scans. Dr. Olencki decided that I could have the brain MRI done in Cleveland since they don't need to compare the current scan to prior ones; it's just the check to make sure that I haven't developed any brain mets along the way. I am tentatively scheduled to be readmitted for Round 3 on Feb 8 and Feb 22. I asked Lori, Dr. O's Nurse Practitioner, what exactly are we looking for this time? Since my case has been such a gray area, I wanted clarity on what would be necessary to continue, given that I have stability everywhere but the one area where they feel the "growth" is actually cancer attacking activity. She said that these scans need to show "measurable shrinkage" of my lesions. That is fair and understandable to me. If I continue to have stability, then that means I am at the end of the line with IL-2. Now, if I have shrinkage but not complete response, (all tumors disappear) then that sets me up for not only a Round 3 but also a Round 4 (AAAAAHHHH!!!) which according to how I count on the calendar, would start about April 19. I also asked how many total rounds will OSU do on a patient. I have heard that it is four rounds, most places. She said they have done up to five *gulp* but that has been rare. So right now we need complete response by Feb 1. Go IL-2 Go! CHOMP THOSE CELLS. Use all of what Ellen calls the "Cancer Killing Goodness" possible, please. I will gladly do a third round if I need to but man, I sure don't like thinking about a fourth. That being said, I will do what I have to do, right?

So for now I am hoping to get my strength back, so that I can work on exercise; that is my next big target. I am looking into using one of the couch-to-5K programs available online to help get me motivated, such as this one. I am not really interested in jogging or running at this time, but at getting in a good walking workout, so I think I can adapt these to help me do that. And if I don't get there in two months, I do it again until I do. My body NEEDS the exercise. My immune system DEMANDS it. I have to do it and I want to do it. I'd go out and walk around the block right now, if making it up the stairs to my bedroom wasn't such a damn hardship right now! I have another motivation, based on recent events that rocked my December. I wrote a long post about all of it during my break week but in my post IL-2 delirium, didn't notice that Blogger was not auto saving, then you guessed it, my hard drive crashed. Haven't had the energy or heart to re-write that post yet, but I will. Lots of ideas are floating around this crazy head of mine but I have yet to commit them to space here. Whether they are worthy of that space remains to be seen.

Sunday, December 06, 2009

Home - and loving it

Well folks, I made it through 9 doses of IL-2 this round, breaking my record of 7. As usual, this experience was not the same as either of the others; it's always different, which is really funny given that the protocol is so unvarying.

We got a late start with doses, in spite of my best attempts to get us there in time for the 2pm dose. We first have to go to Dr. O's office in a bldg about 5 min from the hospital, for bloodwork at 7:30 and to see him at 8:00. We ended up arriving at the office closer to 9 both of the first two cycles. First you have to go through registration where they verify your insurance and info, and give you a patient bracelet. Patient bracelets are de rigeur for any outpatient tests, procedures, etc. but are the same as the inpatient bracelet to at that point I am properly "tagged" to be in the hospital. This past Monday Jim and I pushed ourselves to get on the road early enough to if not be there at 7:30, at least make it close. I drove since I know the landscape a bit better by now, and when we arrived, he took the car to the garage while I went inside for regi, figuring we'd meet up in Dr. O's waiting room on the 10th floor. Much to my surprise, the lobby was full of people, in all of the seating, standing around, leaning on walls, etc. Hm, maybe they are all here for a class, I thought as I approached the reception desk. The receptionist asked me to sign in. At that point I noticed that I was signing at the top of a page, she was holding the previous page, and she was only maybe a quarter of the way through that page. I knew I'd better find a seat because I would be in that lobby a while (25 min in the end). Eventually I learned that most of the folks waiting were chemo patients who were scheduled for treatment on the 11th floor that day. Usually they come in, sign in with the receptionist, and she gives them a bracelet that has already been printed for them, so that they can go directly upstairs. The frequency of their visits allows them to not have to register each and every time they are there. BUT! On this particular Monday morning one of the regi ladies didn't make it in to work. All of the day's bracelets were printed and ready to go, in her locked desk drawer. Of course they couldn't find another key that would open the drawer. Most people waiting were of a similar attitude as mine, thinking "oh well... I'll get upstairs late but they will have heard why and will understand it's not my fault." A few people were freaking out legitimately, and a smaller few were kicking up a fuss, asking to talk to a supervisor, etc. When I finally got into registration, I told the rep that it looked like today was providing them an "Opportunity" to improve on one of their department's processes. He laughed and agreed.

So we got upstairs, then had to wait awhile to get my labs drawn - they do this after inserting my port needles, which helps me to be ready to go at the hospital. After that we waited some more and didn't get to see the doctor until after 9:30. He explained that he wasn't sure whether it would be a good idea to treat me again and had actually consulted with the doc who had started the HDIL-2 program at Ohio State. (Wow! That's kinda cool.) The reason for his hesitance was this... the liver mets were all stable. The ovary met was stable too. But the mesentery met had grown, as he'd told me over the phone the week before. This is where I got confused, as I had never been told about the mesentary met until these last scans were in and it was mentioned in comparison to my September scans. It turns out I have met in the middle of my abdomen, not far from where the omental lymph node was removed in Aug of 2008. So this thing has grown, but, I have also had two immunologic reactions to the IL-2 I've received this far; 1) the hyperthyroid, and 2) my eosinophils have been elevated. He thinks that they are causing the mass to appear larger, when in fact they will cause it to shrink. So this maybe good news after all, and made the docs agree that more IL-2 is in order.

We said goodbye to Dr. O, and made our way to OSUMC, arriving in admissions about 11:30. As usual our wait was short, and were being taken up to a room. For the first time, I got a private room immediately, so I was able to get settled in right away, knowing that we wouldn't be moving again. So for the first time I got to put up the motivational posters that I made prior to my first cycle, along with a beautiful poster that all of the Monahan cousins made for me in secret on Thanksgiving. As soon as I get things on my new phone figured out, I will download a photo I took of the poster in my room, or else take a snap of it here. It is gorgeous and every one of the medical folks who came into my room commented on it, so I got to be proud of our family's kids over and over, even one nephew who couldn't be with us on Turkey Day but who was represented on the poster anyhow.

So then we sat, and we waited. We waited, and we sat. We met our PCA, RN, NP and housekeeper. Jim and I both napped. Why all the waiting? They needed the doctor to sign off on approving the treatment to begin, before pharmacy would mix and send my first bag. Needless to say, that didn't happen in time for the 2pm dose. They couldn't get in touch with Dr. ____ (whoever was attending that day) to sign off on the order. She didn't actually sign it until sometime in the evening, when the 10pm dose was starting to look questionable to me. Oh well.

We started at 10pm Monday and I took 9 straight doses. After about 6 the NP would ask me each time, "are you ready for the next dose?" After dose 9, I felt pretty much like "stick a fork in me, I am DONE." I had rigors 7 of the 9 doses; they weren't as bad as the ones I'd had in cycle 1 because I recognized them coming on sooner than before so I was able to get my demerol sooner. But they still exhaust a person, and I was always worried that they would come on sooner than I would recognize them, or that the nurse would not be available right away, or something. I didn't eat while I was there; I had no appetite and the food was not appealing. Plus, my tongue and mouth dried out quite badly, so when I did taste food, it hurt to pass through my mouth. This side effect was bad enough that I actually asked for Magic Mouthwash which makes me gag just about every time I take it. It helped a little; being off treatment and out of the dry hospital air helped more. I had diarrhea again, though that has improved significantly since arriving at home. So after 9, when the NP said, "do you want to do the next dose? It's up to you" I realized that she meant it. I initially told her okay but then discussed it with Jim and he backed me up on my decision to stop. I kind of felt like I wasn't seeing effects that made me feel like additional doses were being beneficial, instead just an accumulation of the toxic effects. I discussed it with the NP and she was really cool about it, agreeing that we'd done well this time but that there was no issue with not continuing. That was on Thursday afternoon; on Friday morning after having not received 2 doses I was already starting to feel more "with it". And for the record, I didn't receive any Ativan this time; I didn't know I'd gotten it last time until long after my hospital stay. So while I felt 'out of it' and did sleep a lot, I always had the sense of time passing this week. On the other hand, the last cycle is just a blur of me being sleepy and sick sitting up in bed, then me being sleepy and sick laying in bed with nobody letting me sit up. At that time I really didn't understand just how low my blood pressure had gotten, so I didn't comprehend that my desire to sit up in bed could have disastrous consequences. Ah well, it turned out fine and was better that I wasn't aware.

Friday morning; the fellow on the floor told me that they would be working on my discharge papers but I probably wouldn't actually leave until about 2 pm. That was okay with me and Jim. This doctor had made me laugh sarcastically back on Tuesday when we met. She assumed I'd had the Monday 2pm dose and when I told her that I'd started Monday at 10pm, her reply was "Oh, you arrived too late for the 2?" Imagine her surprise when I told her "no, I was here in this bed but Dr. ___ couldn't be found to sign off until that evening." In Your Face, lady! HA! She probably didn't mean anything by her question and I answered her politely but felt a bit vindicated inside, petty person that I am. Then the NP came in to talk, discussed what she'd be giving me RX for (magic mouthwash and a lab draw for Monday). And then we waited... had lunch, napped again, kept being told "we're just waiting for final signoff" and waited some more. I broke down that morning and turned on the TV, the first time I'd done so all week. When I started to hear hub-bub in the hall I realized by also consulting the clock, that they were doing "report" at shift change. It was a bit before 3 and I knew better than to check with the desk at that point. Once it quieted down, Jim went out personally to the desk but everyone ignored him. So weird... FINALLY when I hit the call button to ask about my papers, one of the nurses came flying in with them. He had some excuse that sounded like "the NP didn't sign off and we can't track HER down". Not his fault; I'd met him in December but he never cared for me during this stay. But finally we were on our way, after a slow start caused by me giving Jim bad directions to the pickup area. In the end we arrived in Cleveland close to 8:30 so we picked up the girls from their grandparents' house and headed home.

Jim was again wonderful company and made me feel more comfortable by his very presence in the room. He discovered that a cot brought into the room is actually more comfy than sleeping in the recliner, so he was able to get some good sleep while we were there.

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!

Friday, October 30, 2009

Yah, I'm lame...

... since I haven't been here in far too long. But no news is good news, I guess. I'm right back in the swing of things at work, and busy documenting the stuff I didn't document before I went on leave, as well as clarifying documentation that wasn't as clear as my coworkers needed it to be. If I am lucky enough to go back to OSU for round two, I will hopefully leave things in better shape than I did in September. It's not that I left things a mess, but I like to make it as easy as possible for them to keep up with my assignments.

Today one of my coworkers gave me a file of some info she thought I should have as backup, which is a good idea. She commented that when she was looking for similar stuff while I was on leave, she had a hard time finding anything. Later when I was looking for a file I realized just how crazy my file drawers look to other people, and indeed they are a mess. I made a mental note to spend a bit of time tomorrow getting rid of stuff and reorganizing a bit. So I found it amusing that tonight Google Reader recommended The Clutter Diet Blog and the entry that I opened to is titled "Oh, Goody! It's National Clean Out Your Files Month!" A sign for sure! The author is talking home files as well as work ones. Well, my home files are in a very sorry state, and the last two days of NCOYFM would only put a dent in what needs to be done. But I will now DEFINITELY get to work in my office tomorrow. I only have two file drawers, for cryin' out loud, so it shouldn't take that long to make it much nicer. So, that is my goal and pledge to you, my readers... that I accomplish something with this little project.

Lately I have actually had more energy to work on decluttering in our house, and on keeping up with house tasks in general. At times I will watch myself moving from one chore to another and think, wow, who is this fairly efficient person who hasn't retired to her PC yet? Real progress has yet to be made, except on our kitchen table, which was a paper/toy/odd-item-that-nobody-can-identify-the-source-of magnet. I got it clear down to the wood, which was then cleaned with Murphy's Oil Soap and we enjoyed our first clutter-free meal as a family in a while. There has been a bit of backsliding over the past two days but I plan to nip that this weekend. I will admit that the fair amount of stuff that was Jim's went into a box, but he dealt with that graciously. I have this crazy goal to get our first floor common areas all tidy enough that if someone drops by unannounced, I won't die of absolute mortification. Sadly that goal is a bit off, and I am kind of embarrassed to be admitting this here, but if I'm not going to be honest, then this isn't much of an outlet for me.

In a prior post, I mentioned that my bout with hyperthyroidism caused me to lose quite a bit of weight. As my appetite returned, I figured some weight would come back, and it did, about 6 lb or so. Even though I wasn't surprised, I was a bit dismayed, as the weight loss was a wonderful side effect. I now have several pairs of work pants that I can no longer wear. And I have been able to wear several items that looked horrible on me not long ago. So in a typical for me head-in-the-sand reaction, I avoided the scale for several days. I think I was afraid that seeing it go up would dishearten me to the point that I would give up altogether on trying to eat more healthfully. This morning I finally bit the bullet and climbed aboard the Tanita. Lo and behold, no horrible news awaited my downcast eyes; in fact great news did, as I am a pound down from my lowest weight of two weeks ago. AWESOMENESS! It would appear that mealtime portion control and once again quitting nighttime snacking (mostly) has paid its rewards.

So, this energy that has arrived in the wake of my incapacity has been good for me in several ways. I want and plan to get some exercise going on a regular basis. I can walk at lunchtime at work, or on the treadmill in our basement that right now holds boxes, or do a walking dvd. It is hard with my schedule to have a block of time to devote to exercise, so for the time being I am going to have to squeeze in little bits of it here and there.

My diet itself is more under my scrutiny than ever before. Several people have recommended the book Anti-Cancer: A New Way of Life by David Servan-Schreiber. He is a doctor and researcher who developed a brain tumor, and decided to research how he could boost his immune system to fight the cancer. I have owned the book for a few months but only recently picked it up to actually read, in my ostrich way. I have only read the first few chapters but have found it interesting reading. At this point I am not up to the food chapter, but I have skimmed it and while the information in it is not new, it resonates more than ever; maybe I am becoming more ready to embrace change? Maybe I am also scared that if I don't make some changes, I will certainly regret those decisions as they impact my health? Maybe a good dose of both. And I am certainly aware of the impact on the girls of me modeling healthy eating habits. Not that they may take hold any time soon, what with the utter pickiness that goes on at mealtime! But I will keep trying; I remember hating as a child a lot of things I like to eat now.

Wednesday, October 21, 2009

Back in the swing

I started back to work on Monday. It felt odd to make the commute but my car and I remembered the way. I got lots of warm greetings from my coworkers, and my supervisor gave me a bunch of orange and red-and-orange roses, which were just beautiful. Getting back in the groove of work didn't take long at all; by the end of the day Monday it felt pretty much like I'd never been away.

Tuesday I worked in between trips to the Clinic for my thyroid testing. I had to visit Nuclear Medicine in the morning to get my dose of radioactive iodine. To my great relief, the iodine was in capsule form... no poking my veins! I had to return four hours later for the scans themselves. So I went back to work for a couple of hours. After the scan, I had to go to the endocrinologist's office, in a building across campus. The nurse doing the preliminary questions made me a bit nervous. She said, "If the doctor decides to send you for a treatment today, we will give you a pregnancy test first. Otherwise you'll get over there and they will send you back for one." Huh what? Where? She explained further that I might have to go back to Nuc Med for a radioactive iodine treatment. She left me on that note and then the appointment scheduler came in, apologizing for something but I had no idea what she was talking about. As she talked, I figured out that she had given a sheet of instructions to another patient who had an appointment for testing at Nuc Med, only the sheet was outdated and had the wrong location code on it. Apparently the patient had called the chairman of the Endocrine Institute to complain. Ouch! Fortunately, I wasn't that patient, and I had looked up the appointment in MyChart (the Clinic's online medical record system for patients) and so I knew that Nuc Med was in a different location from before.

As I sat there shaking my head, the doctor came in, with very good news. I had a case of thyroiditis, which has pretty much resolved. By Friday my T4 had dropped from >7.8 to 2.0, so by now it's likely further dropped into normal range. She instructed me to stop taking the beta blocker medication and said that she would like me to do repeat blood work in a month, but otherwise didn't need any more follow up with her unless I had another problem.

So, Very Good News! I was extremely relieved. I came home and pretty much collapsed, partly from the relief, and partly because I had done a TON of walking at the Clinic... the parking is NOT close to Nuc Med, so I hiked a fair bit... twice. But it was worth it to know that nothing sinister is going on in my neck.

Tuesday, October 13, 2009

Imelda's closet

You know how they say that when something bad happens, you are waiting for the other shoe to drop? Well, I have decided that my family must be residing in the closet of Imelda Marcos, since shoes just keep dropping.

Since I have been home this time, my appetite continued to be non-existent. I have also been dropping weight like crazy - like 27 lb in 2 1/2 weeks. I can definitely stand to lose that weight and then some, but it's too fast. Plus I have been feeling nauseated all the time, and have had to force myself to eat a little bit. The not eating resulted in weakness, which then made me more nauseated, so it has been a vicious circle.

Not that I have been up and about much... getting up and standing for any period of time was causing me to feel lightheaded and dizzy. One night last week Jim suggested that I take my blood pressure reading - genius! I did so and it was quite low. After that I quit taking my hypertension medication so that it wouldn't go TOO low. And my pulse has been high, running in the 110s and 120s at rest and up to 130 if I had just been up and about.

I tracked my bp readings all day last Wed and called Dr. O's office on Thursday. Lori, 'my' NP was not available, but the NP I spoke with was very helpful. She asked me a ton of questions and was very concerned about my rapid weight loss. She recommended trying to eat small amounts of food every couple of hours, and wanted to have a bunch of lab work done. She offered to fax an order somewhere here in Cleveland, but instead I wrote down all of what she wanted done, and emailed the list to Dr. Rini. He had his nurse enter the order so I was able to go to have the blood drawn.

On Friday I was still waiting for results when Jim called me from work. He had bad news - he'd just been informed that he was laid off from his job. He couldn't spend time giving me details since he had to clear out his office, so I had no real information about the situation until he got home. I was stunned by the news and then really upset. What happened was that some of the work his group does, to do with data security and storage, is being outsourced. So it was decided that four people are no longer needed in his group, and Jim had the least seniority of the four. Luckily they are being generous with severance pay, and he has leads out already, so I am trying to tell myself that something better will come of this. It's been a big blow to his self-esteem but hopefully he'll pull himself out of it soon.

While I waited for him to come home, I got a call from Dr. Rini's office. They had my bloodwork results and my thyroid was off. I have been told since I was pregnant with Carly that my thyroid has been low-normal and that eventually I would be hypothyroid. So imagine my surprise when I was told that my number was extremely high! They made me an appt with an endocrinologist for this coming Friday, 10/16, the first they could get. And they sent my results down to Columbus along with information about my appt.

I went online to look up hyperthyroidism and wasn't sure what to think... one of the causes could be a nodule, either benign or cancerous, on my thyroid. This was an upsetting notion to me, of course. My mother in law had hyperthyroidism as well, and told me that it can also be caused by a big stress to the body, which I definitely have had. I understood that but still felt nervous... then one of my kidney-onc list members told me that HDIL-2 can cause thyroid changes. So let's hope that is what it is.

By Saturday I was feeling worse... really shaky on top of everything else. Jim was really concerned so we called the Clinic's advice nurse line for help, late Saturday afternoon. The nurse was very kind and helpful. She agreed that it looks like hyperthyroidism is my problem. According to my symptoms, she recommended we go to the Emergency Room at the Clinic - she thought maybe there would be an endocrinologist on call so it would be better to go there than to one of the closer community hospitals.

So, we packed up the girls to have a sleep over at Grandma's and headed downtown. We got to the ER at about 8:30 pm. They told us they were "slammed" and the waiting room was busy. We were called back to a room at about 10:00 pm and the true waiting began. The first person to see us was a resident from Neurology - must have been on an ER rotation. He asked me what was going on, then decided he should go read my history first. Took him a while to come back; Jim commented that after reading everything, his head exploded! But he did return and said that they would draw blood. After that it's a dull blur; I told him that I have a medi-port so I didn't want an IV or blood draw from my arms. Next thing I know, a clinical tech comes in to do venipuncture. She went to tell the nurse about my port. Then another tech came in to do venipuncture. Finally the nurse was free and she was wonderful. She took care of everything efficiently and with kindness. In the mean time we had been told that they were going to give me a beta blocker to bring down my pulse. Then I was told I would be hospitalized until an endo could see me. This upset me a lot - how come the day before I was basically told I would be fine for a week until I saw the endo, and now I needed to be admitted? After consulting with hem/onc and endo, it was decided that the beta blocker should help me enough to go home. So the nurse infused my line with a beta blocker and sure enough, we watched my pulse go down right on the monitor. The nurse said she'd be back shortly to check on me but then wasn't. At some point around 3 am Jim noticed that my IV fluids bag was empty, so I hit the call button. It took like 10 min for them to answer!!! I have never had that happen. I told them I needed my nurse because my IV was done and was told "no problem". As of an hour later, she still hadn't appeared. I hit the call button again, and again 10 min later. It was incredibly frustrating. What if I was in that room alone and had coded? At some point they replied to my call, by shutting off the call light!!

The 4:00 hour brought some activity. I had sat up at this point and noted that my pulse was back up to 120 on the monitor. Then someone came in and said they were preparing my discharge papers. What the hell?!? The supervising doc came in and explained that because my pulse had initially gone down, the beta blocker was successful. They would be giving me a prescription for a higher dose of beta blocker to take at home. She also explained that our nurse had been tied up with a particular patient situation for a couple of hours. We told the supervising doc that we weren't upset with the nurse, but with the fact that nobody answered the call light. She agreed that was a problem and noted that there were several issues that had come up that evening that would need to be addressed.

My nurse came in to take the line out of my port, etc. and was extremely apologetic. We felt bad for her; she was wonderful with us but we understood that she couldn't be in more than one room at a time. However, this is why I LOATHE going to the ER. Bleah.

We finally got out of there at about 5am and went home to sleep. The girls were brought home by Grandma about 11:00, after PSR, so I didn't get a lot of sleep.

I started the beta blocker prescription that evening and it has helped a lot. As of this morning, my pulse was 78 and my bp was 105/67. And, I am getting my appetite back. Now, if I can get my energy and stamina back, I will be ME again.

Sunday, October 04, 2009

In the 8ww

The 2ww is a term familiar to people trying to conceive a baby, especially those who are battling infertility. 2ww stands for 2 week wait, which is the period of time between when a woman ovulates and when her period is due. It's the time when she wonders and worries if this time will be successful, or if she is back to square one.

Right now in the Monahan house we are experiencing a similar phenomenon, which I am calling the eight week wait, or 8ww. I have scans - so many scans! - scheduled for the week of November 16. I will have another brain MRI, a chest CT and then MRIs of the abdomen and pelvis. The idea is for us to have results before Thanksgiving, which is the 26th. If the results are positive, then I start round 2, cycle 1 on November 30, and round 2, cycle 2 on December 14. If the results don't show either stability or improvement, then my trips to Columbus will be over, and I will be back to square one, as it were, back in Cleveland. As there are lots of other options, it won't be the end of the line, but I sure hope that all the yuckiness I have gone through will prove to have been for something.

Last week in the hospital proved to me that you can't predict how you will react to an IL-2 cycle based on past cycles. It started out different in a good way because Jim accompanied me for the duration. It was wonderful to have him there to help me with small things and to hug when I needed one. I still get teary thinking of his kindness during my stay. Yes, he is my husband so it should be 'expected' of him to take care of me, but I was at first fighting my desire to have him with me against my desire to keep the girls' routines as similar as possible. Actually, staying at their grandparents' house the whole time I was away was probably the best thing for them. Grandma and Grandpa were wonderful with them, and while the girls tired them out, they enjoyed keeping them as much as the girls enjoyed staying there. Our dogs stayed at a kennel this time, which I think bothered Bailey in particular. Jim brought them home the morning after we returned. Trixie came right up to see me, her whole butt wiggling. Bailey came upstairs, looked in the bedroom door at me, and, ignoring my calls, turned around and went back downstairs. COLD! He got friendly again later on when he realized that he could nap on the bed with me.

But back to The James... we didn't have any crazy surprises this time, so we were able to get in to my room (actually a semi-private again at first) right away and were on schedule to get my first dose at 2PM. We hadn't eaten lunch, and had very little breakfast, so Jim went down to the Wendy's located in the hospital (it is Columbus, home of founder Dave Thomas) and got me a chili and a baked potato. Got my first dose of IL-2, along with demerol, tylenol and compazine. Well guess what... even though I never vomited during cycle 1, the trend didn't continue with cycle 2. Suffice it to say that I won't be ordering Wendy's chili for quite some time. My poor roommate had to smell our lunch, which made her nauseous, then listen to me retch. Meanwhile she was going through her own stuff. Luckily for both of us, a private room became available later that day so we were able to move. After this, it all becomes a bit hazy for me. I was alert a lot, and had visits from my Columbus friends, but felt very flu-ish the whole time. Then the bottom fell out... or actually my blood pressure. I remember them saying that it was as low as 60/30, though Jim says it was actually a bit lower than that... scary. I didn't realize it at the time, but they almost moved me to ICU. Fortunately they were able to bring my pressure up enough to keep me out of ICU. So, I had a grand total of 4 doses this cycle. I am not happy about that; since I had 7 last time I had a total of 11 out of 24. Rationally I know that if it is going to work, that this may be the amount I needed, but still I worry that I didn't get enough.

We got home on Monday evening and my in-laws brought the girls home. It was so great to see them but I was feeling so tired and sick that it was hard to enjoy them. The last several days have been a bit of a blur. I have felt absolutely crappy. After the first cycle I was a bit sick but this was definitely cumulatively worse. I have also been much more nauseated this time. Fortunately I asked for a prescription for Compazine when I was discharged; I thought I might only need it once or twice, but have taken it just about daily. I have been napping, still not as much as I should but more than I did last time, since I know I overdid things last time. Like the day before starting treatment, I used the push mower to cut the front lawn and part of the back. Stupid! About 1/2 way through I felt awful, but kept going. I will not be running a lawn mower again this year.

I'm looking forward to having energy again; it's coming back though more slowly than I had anticipated. As I feel better, I also feel more optimistic about the future, whether the IL-2 works or not. When I was in the hospital and when I first got home, I felt very pessimistic, which led to a lot of crying either alone or with Jim, who just let me vent, bless his heart. I have to keep fighting; I don't think it is fair to leave my girls with no mom at such a young age. And I want to enjoy some retirement years with my sweetie.

I pray a lot, too, which opens up a big issue for me. When I talk to God I ask him to please let me live a long and healthy life. I even tell him how unfair I feel it would be for me to not see my babies grow up. But then I think of the phrase "if it is your will" and that makes me so upset. I don't WANT it to be God's will for me to die early! Of course nobody does, but I can only think about myself at this point, right? I just can't feel okay with dying young, at least not right now. A family member was kind enough to talk to the priests at my parish about praying for me; this made me think maybe I should talk to one of them. Unfortunately, I don't know if they can change my feelings on this subject. It's too emotional right now - I have cried pretty much the whole time I have been writing this paragraph.

In short, I'm a mess. Hoping to clean things up sooner than later.

Tuesday, September 29, 2009

Back home

We got home last night (Monday) around supper time. It was a truly hellish experience, but I am home now. I only received 4 doses befre my kidney and blood pressure both crashed. More to follow once I rest myself back to good health.

Monday, September 21, 2009

Round 1, cycle 1 - the aftermath

While I was sweating and fevering my way through my weekend, life was continuing at chez Monahan. From what I understand, Jim napped some during the weekend - his way of coping. Rebecca glued her eyeballs to the TV to watch Disney Channel - her way of coping. And Carly, who has seemed like she only understood the situation to a point, and therefore was handling it all okay, acted out in some very 3-yr-old ways as her way of coping. According to Jim, she was constant sound and motion around him all weekend. This is not unusual Carly activity, but was more intense, especially since I am usually the focus of this sound and motion. At one point he was outside cutting the grass and she was following him back and forth in the yard, trying to carry on a conversation. My next door neighbor took pity on Jim and invited Carly to come help her water her plants... bless Nancy! When they were done, Nancy told Carly that she had to be careful to make sure Jim noticed her coming back since he was using the mower. Carly responded "It's okay, he will hear my feet." Ok then.

At some point Carly decided to make her mark on the family. I am not sure which event happened first, but here they are. Our foyer is two-story - we live in a Cape Cod style house, and the stairs go straight up from the front door to the second floor. At the top of the stairs is a loft, which serves as my office and has two skylights. It's very open and airy feeling, which drew us to it when we first looked at the house, and it is painted white. Carly decided that along the stairs, some redecorating was in order.
Solar system?

No clue what was going on here and the artist is not speaking about it.

An alien? I didn't bother to ask.
They all look smudge-y because Jim's dad tried to clean them off using Mr. Clean Magic Erasers, but these hieroglyphics appear to be immune to Mr. Clean. My niece has offered to paint the wall for us, and we'll likely take her up on it once we're back from cycle 2. Of course if we paint that wall, we should paint the rest of the white, but I don't see that happening right now - too much stuff to get out of the way, and we'd need to hire someone professional for the cathedral ceiling parts.
Carly also decided to try her hand at barbering. She has been wanting to have "long hair like sissy" so we have been working on growing out her bangs. Here is a photo of her from a couple of weeks ago:

Both shirts read "when all else fails I blame my sister"

Carly's hair cutting system:

Step one - take a pair of kid scissors to your bangs, on one side. Cut them short. It's fun watching the hair fall away, and fun looking at it in your hand.

Step two - your sister has longer hair so you will need bigger scissors. Find those in the kitchen drawer. Walk into the living room where your sister is sitting on a kid chair in front of the TV. You don't need to be particularly quiet because when she watches TV, her parents call her "mesmerized and hypnotized". Therefore, she is not aware that you are even in the room. Come up behind her, open the scissors, slide them in along her neck and cut! It's even more fun to watch longer hair, like six inches long, falling to the floor. Watch sissy as she yells at you and goes to get dad. Watch dad as he flips out. It's very satisfying when you are 3, your mommy is in the hospital and you feel that you are not getting enough attention.

Jim told me about the hair affair on the phone; he didn't tell me about the wall, but somehow I had a feeling about that being a possible action, and was proven right when I opened the door upon my return Tuesday night. That premonition didn't keep me from screaming, however. As for the hair, I had repeated dreams in the hospital in which I asked Carly to explain her actions but she wouldn't answer me. When I asked her about it at home, she said "I wanted Becky to be a Snip-Its (kid salon) girl."

Jim and his mom took the girls to the real Snip-Its to see what could be fixed. He and grandma tried to convince Rebecca to get her hair cut short to even it out, but she was extremely resistant. They even called me to weigh in on the matter. I was feeling pretty out of it when Jim called, but told him that they should do whatever Rebecca wanted. So her stylist, bless her heart, shaped it some to look like a layered cut.

Front view - looks pretty much the same.

Back view, not so much. But a valiant effort.

Carly is now back to short hair and bangs.

Rebecca coped pretty well all week with comments about her hair from everyone who knows her. On Sunday Jim and I had our regular appointment with our stylist, Kim. She took one look at Rebecca and announced she had some ideas, if Rebecca was willing to let her cut some of R's hair. Rebecca agreed, and this is the result.

She is THRILLED with her new cut and so are we. I'm happy that it was her decision in the end; I think she just needed some time to come to terms with such a big change. The poor kid has been growing her hair out since age 4 1/2 so this was a big mental adjustment for her. Thank you Kimmy for making my girl smile!

Saturday, September 19, 2009

Round 1, Cycle 1 - the haze

I was at this point a tethered woman. I had an IV line from my port infusing me with saline all the time. When I got my IL-2 infusions or any other infusions needed, they would use the second port of my fancy Power Port... very nice. It really didn't bother me at all to have the port; the only inconveniences were feeling it when laying in certain positions, and while the tubing was still connected (short tubing that connects to the IV pump tubing) I would have to have a PCA 'tape me up' to take a shower, to keep water off the port lines. This was accomplished by either using a small bio-hazard/sample bag or a piece of Press and Seal plastic wrap (I kid you not) and medical tape. Fortunately, when no needles are attached to my port, I have no shower restriction. I was also connected to a cardiac telemetry device. Think of having EKG leads attached to you all the time and plugged into either a machine or a portable remote device. The machine sent my cardiac information to the nurses' station continuously, via a funky antenna on my ceiling. This was no big deal either, EXCEPT that sweaty me would cause leads to fall off, which would then cause the machine to beep until I or a staff member fixed them. Also, they had to be removed for me to shower, so between the telemetry and the port lines, I always had to announce my showering intentions ahead of time since I needed help!

We got on a schedule, the staff and I... the nurse and PCA would come in at the appointed hour, and do a number of things, including: giving me an oral dose of acetaminophen and compazine, take vitals, flush my line, start the IL-2 drip, and infuse my line with demerol. I would then try to relax and sleep. During the first 2 hours, vitals were taken every 30 minutes.

Within 90 minutes or so of each infusion, I would need to get up to use the rest room.

Sidetrack here: One of the big side effects of IL-2 is water retention. The patient is being pumped full of fluids, and is encouraged to eat and drink whatever he/she can tolerate. They are also watched like a hawk as to what is 'produced' in the bathroom. To facilitate proper measurement, I had the lovely pleasure of having to pee into a 'hat'. It is a plastic receptacle that sits on the toilet bowl, under the seat, and measures the amount of urine produced. The thing is, there isn't much. I felt the urge to go at appropriate times, but rarely was able to send much to the hat. This was an odd sensation, and meant that I was in fact retaining fluids. It is not unusual for an IL-2 patient to leave the hospital 30 lb heavier, though luckily I was only up about 10 lb. This didn't surprise me since I sweated a great deal pretty much the whole time I was there.

Ok, so back to the routine. I would get up, and of course the air walking across the room is cooler than the air trapped in your blankets, so I would start to feel a chill. By the time I got back to bed, the chills (known as the rigors) would take over my body, so that my teeth chattered, with my jaw tight, and my body shook, especially my legs. I knew to call the nurse right away. I always got someone to attend to me in under 5 minutes, but that 5 minutes felt like hours. The nurse would shoot more demerol into my line and within a few minutes, I would start to feel a heat-like sensation radiate from my torso. Bit by bit, I would stop shaking and feel comfortable again.

I slept a lot, though never in big chunks as far as I know. I dreamed constantly, and they were weird, hallucinogenic dreams. In them, I would be interacting with people from my real life, talking to them though I couldn't get them to respond. I knew that they weren't responding because I was dreaming, but it was still odd. Often I would be holding, touching, grasping things that didn't feel 'right' only to find that I was holding onto my blanket or pillow. Sometimes I would ask questions of people in response to things I had been told when I would hear from family or friends. It was really, really odd, and the odd dreams only really just stopped about 3 nights out from leaving the hospital.

I experienced others of the usual side effects.

- loss of appetite. It went pretty much immediately. I knew that I needed to eat, but just couldn't. Several meal trays went back untouched, and other times I tried to take at least a couple of bites of each part of the meal. Hospital food is what we all expect, and I did learn that next time, I will request no gravy on anything. Since they are trying to keep the food as low-fat and low-sodium as possible, they use a fair amount of pepper especially in gravy. Yuck. On a good day a little pepper goes a long way with me. When I could barely face food, it meant the difference between getting some of the mashed potatoes, which were actually good, and smelling the pepper and putting the lid back on the plate.

- loss of alertness/weakness. The lack of food was not helping this one at all, and was the ultimate reason I stopped at 7 doses. As I got weaker, I couldn't think much, couldn't read, use the notebook that Jim bought me to use there, couldn't carry on a conversation of any length or depth, etc. People left messages on my mobile phone and it was all I could do to listen to them, much less respond to anyone, as sometimes the thought of having to press the required buttons on the phone was too tiring to me.

- diarrhea, which wasn't actually bad, probably because I was eating so little. Everyone asked about it continually though. Early on someone mentioned that they might want me to produce THAT in some kind of 'hat' as well, to check what fluids was I was losing. When I mentioned it to the NP though, she said "oh no". Thank goodness.

Good times.

There is nowhere that I find comfortable to sit for any period of time in the hospital. I think this fuels my desire to leave ASAP whenever I am there. I can only sit/lay in bed for so long; the 'recliner' chair bugs me, the regular chairs bug me, and so on. And I hate trying to type on a keyboard while using the bed tray, so being verbose online while admitted... not possible, luckily for all of you.

An interesting silver lining, though: Since IL-2 causes blood pressure to drop, I didn't need to take my blood pressure medication while in the hospital. Also, my readings were lower than they would be normally on meds but the drop for me from hypertensive to IL-2 land kept me in the normal range. Nice little side benefit.

By seven straight doses, I was mentally and emotionally wrecked. I was ready to leave immediately (or as immediately as possible, considering patients need to be monitored for a day or so after the last infusion), have my port pulled and quit altogether. I talked to my nurse, who recommended I skip the next dose (6 AM) and continue at 2PM. I agreed but felt pretty certain that as soon as I started to feel better, I wouldn't willingly take another dose. Everyone at the hospital was really nice about it, expressing empathy for the roughness of the treatment. I had feared that I would be told I had to keep going, especially if stopping meant I would be leaving the hospital AMA.

Strategies for next time:

Listen to the creative visualization CD that was recommended by kidney-cancer-friend Angelo. I had it with me on the first trip but didn't listen to it until I got home. I enjoyed the imagery she used and plan to listen to it more frequently.

Put up more photos of family, friends, etc. to remind me what is at stake here... my life.

Have someone get me to eat a bit so that my weakness doesn't become my downfall. To that end, my sweet Jim has decided to spend the entire cycle with me at The James next week. The girls will stay with his folks, where they love being, and I will have my sweetie there to keep me strong. I need that a lot... I felt so much relief once I'd verbalized my desire to end my infusions, but felt very guilty/weak later. I know that I HAVE to finish this cycle. And if I am blessed to have a response, I will HAVE to go back for another round (two cycles), likely in December... oh yuck of yucks. The idea of being away during the holiday season is really upsetting. They would make sure I wasn't inpatient on Christmas day, but I would not be able to postpone round 2 until January. Very distressing to the mommy who wants to have fun holiday memories, every year. But after mulling it for a while it finally hit me (I told you they found nothing in that brain MRI!) that if missing one holiday season gives me the good health to be here for many more, who the hell will remember that I wasn't at the holiday program wherever, in 2009?

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...