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.