Monday, August 31, 2009

One step closer to the big time

Got good news today - my MRI shows no brain mets. So my date with Interleukin-2 is still on! Tomorrow is my day trip to visit the cardiologist and then to OSU to breathe into some tubes... aka pulmonary function test - judging by the way I was yelling at the girls tonight, I'm guessing my pulmonary function is just fine.

The day turned bad after I left work. I was waiting to get through a busy intersection on my way to the freeway, and pulled up to the next line of waiting cars a bit too soon. I thought I was okay, but the cop who pulled me over did not, and gave me a ticket. BOOOOOOOOOOO. It was my fault - even though the next light was green, I should have waited until the intersection cleared, but still... just one more hassle, expense and complication. For part of the trip home I muttered arguments that I could use if I go to court. Court date is 9/23 so conceivably I could go, but let's face it, I am not bloody likely to win at mayor's court when it's an intersection that resident have long complained about, being blocked. *sigh*

Then I got home and Carly told me that I got a package. I knew this, because I'd checked online and some clothes we'd ordered from Gymboree were due to arrive. Carly then informed me that Rebecca was inside opening said package. Ok... so I walked into the front hall, and Rebecca approaches. Does she say "hi mom", "how are you" or any other pleasantry? Of course not. She's angry because a shirt that was supposed to be for her, was in Carly's size. I must have entered the wrong size on the order. But in Rebecca's mind, this was a deliberate slight, an attempt to show that Carly should get more, that I love Carly more, ad nauseum. I was pissed. And I told Rebecca that I really didn't appreciate her attitude and lack of the common decency of a 'hello'. After we both calmed down I explained that we can check the local Gymboree stores and see if they have the shirt in her size so we can exchange them. No big conspiracy. *sigh again*

The good news far outweighed the bad today - how come I still feel beat up???

Saturday, August 29, 2009

Highway...

I forgot what a 'joy' it is to travel Interstate 71 between Cleveland and Columbus. Actually it really isn't bad, at least compared to when I did the trip regularly on my way to and from college in Cincinnati. Back then there were very few places to stop, if you wanted a coup of coffee or something to eat; now the choices are endless.

Friday was trip number two - had to be there by 11:00 for a stress test, at the offices of the cardiologists Dr. O likes, who of course are not located anywhere near OSU, but east of the city, near the airport. Somehow I managed to shut off my alarm clock, so we all woke just after 7AM. Jim took a shower while I helped the girls get dressed and got Rebecca breakfast, as her bus is scheduled to pick her up at 7:38. I figured that I didn't need a shower until after the stress test. We got everyone out the door, and I got my stuff together and took of for the interstate.

After I had been in the car 45 minutes or so, as I listened to an interview on the radio, they mentioned blood pressure. OH NO! In my haste to leave, I forgot to pack my daily medications, and forgot to take today's pills. Super... I was not really concerned about my crazy pill (Celexa), my focus pill (Vyvanse) or my vitamins. But I also didn't take my blood pressure medication. I talked to Ellen about it and then called Jim. He found a CVS within a couple of miles of my appointment, and kindly agreed to contact our PCP to have them call down a prescription. I also forgot that I was going to take some xanax with me for the MRI that I had scheduled as my Friday Night Fun activity. Jim called back a bit later to let me know that the phones were down at our doctor's office, so he emailed the doc and his nurse. They responded right away and were happy to call the scripts in. When I arrived at the designated CVS, they had just gotten the call so I had to wait a few minutes, but not very long. What a relief.

I made my way to the medical building, where first I went to the wrong office (very small signage to let you know where the heart center is!) but then arrived at the right desk. I was immediately told that there was a bit of a problem... I was not supposed to have a stress test after all; all I needed to have was an echocardiogram (ultrasound of the heart). I will only need a stress test if the cardiologist, whom I will see on Tuesday, feels it is necessary. Ok, that is good... the stress test was the chemical kind and was scheduled to take 3 hours. On the other hand, the echo could have been scheduled along with the doctor visit. And so, since my MRI wasn't until 9:15 (8:45 check in), I could have worked on Friday, saving a precious 8 hours of PTO. *Sigh* The u/s tech was really super nice and I was out of there very quickly. I decided to do what everyone should do after leaving a heart center, and had lunch at KFC. It's a place I go very rarely, but once in a while I just want it, and had seen one up the street from the heart center. So, I grabbed a magazine and went in. Upon entering, I discovered the tables filled with students from the nearby high school. Oh joy... not what I wanted to see. They weren't unruly, just kind of loud, and I briefly wondered if I would be targeted in any way, as a fat person. But nobody seemed to notice me, and anyhow, as I waited in line, they all started to file out, so lunch period must have been over. By the time I took a seat, the dining room was largely empty, allowing me to enjoy reading a bizarre interview with Ryan O'Neal about Farrah Fawcett in Vanity Fair.

Now that I had my quarter or half year's worth of KFC in my system, I headed to Ellen's house, where I chatted with her and her mom for a while but started to feel really sleepy. I took a shower and relaxed in the guest room, deciding to take a brief nap. As I laid there, I felt a wave of sadness wash over me, a sense of grief over what is happening right now. These periods are not frequent, and they don't last long, but are pretty powerful when they do. And it felt strange to be far from my nuclear family, even though I was lucky enough to be staying with a family who is about as close to blood family as I have, a fact for which I am so grateful. I ended up sending Jim a brief sappy text and falling asleep for what ended up being about 2 hours.

We went out to eat and made it back to their house just before a huge thunderstorm arrived. Lucky us, it was still raining hard at 8 PM as we got ourselves together to go down to OSU, since the MRI was scheduled at the main hospital there. Ellen's husband Jay drove us, and we actually had some silly fun driving there and then locating where the heck we were supposed to be. It was very quiet at the hospital, being evening, but clearly open. The signage was good so we didn't have trouble finding where we needed to be. However, I felt very keenly what patients must feel like trying to negotiate through the buildings at Cleveland Clinic. It's strange to be walking around someplace you've never been, while the reason you're there is in the back of your mind. Very odd.

When we got up to the registration desk, I learned that I was the last scheduled patient of the night. I was taken back immediately, filled out the obligatory forms, and got ready to head to the big magnets. The tech who started my IV and tested my blood was nice, as was everyone back there. They clearly know how important it is to treat patients with care, and it was very calming. Interestingly, they were all males in the MRI area. I wondered to myself if females work in that area, or if they do but not second shift. Not that it bothered me, just interested me as a fact. The test itself went fine; it felt odd to have my head somewhat squished into place though not uncomfortable at all. I kept my eyes closed, so I didn't feel panicked. Also, I was able to keep my arms at my sides with my hands resting on my abdomen, and that made me feel less "stuck". I don't know how much the xanax helps me, since I don't feel obviously 'drugged' when I take it, but I definitely don't feel anxious so that must be what it is doing for me. They stopped things to put contrast into the IV line they had started, and that was when I caused trouble, or rather, my veins did. The tech went to flush the line and I felt a stinging sensation, from the saline. It wasn't horrible, but I knew I shouldn't be feeling it, so he stopped and removed the line. That led to him looking for another vein, which is always a difficult task in me. He ended up trying one in the back of my other hand, which blew immediately, at which point another tech came in and was able to put in a line very near the original site. We finished without incident, and I asked the tech if he had in fact seen my brain when doing the test. He laughed and reassured me that he had, so for those of you who say that I have lost my mind, HA! It may have been lost, but has now been found!

I rejoined Ellen and Jay who were watching TV in the waiting area. She had given me a bottle of water, and the tech gave me one too, to make sure I flushed out the contrast as soon as possible. I dutifully drank as we went home and while we watched a movie. All that hydrating caused me to get up a couple of times during the night, but when my kidney works, I am always thankful!

On Saturday I slept in, packed up, had breakfast with Ellen and Jay, and hit the road to head home. I made a couple of shopping stops along the way, including Grandpa's Cheese Barn. I hadn't been there in years, and we arrived after they closed on Monday, but I had promised the girls I would pick up some fudge, which I did. I admired all of the kitsch while there, and did get a little bit of cheese, along with a couple other snacks. Once I got home I took Carly to a birthday party at Chuck E Cheese, and then both girls to the library. My ulterior motive there was to get myself some more audio books, as I had no books left to listen to on Friday... leaving me stuck with the radio since I don't have any CDs in my car currently. Yikes! I am well stocked now, for both work days and travel.

Sunday was a slow, at-home day; worked on cleaning up lots of paperwork. My focus is on getting our first floor common areas decent so that if folks stop by, I won't die of embarrassment. Forget the cancer! After supper Carly asked me to come outside to help her try to ride the bike Rebecca is outgrowing; it's a kid's bike with training wheels. I agreed; it was a lovely evening, just cool enough. I chatted with a neighbor whose kids were also outside, and enjoyed the evening. Now I'm just gearing up mentally for a week that will be split among work, travel, and medical appointments. Jim's mom has offered to go with me to Columbus on Thursday and Friday. On Thursday I am scheduled for CT scans, which will be my baseline scans for the IL2. On Friday is the procedure to place the port in my chest. Since she'll be driving, we should be able to go home Friday rather than stay over Friday night, though we will do that if needed.

As this all gets closer, I worry more about what I need to get done at work, at home, prepping the family for my absence. Part of me thinks about it a lot while part of me procrastinates doing anything about it. Funny how the mind works.

Tuesday, August 25, 2009

The Buckeye show

Monday was the big day... my consult at OSU with Dr. Olencki. We went to Columbus a day early and had a fun time at the zoo with our local friends, Ellen and Heather. Afterward we returned to Ellen's house for Fred Flintstone steaks and good conversation, then on to the hotel. Man, I was tired... walked a ton at the zoo, and on Saturday I took Carly to a birthday party at Memphis Kiddie Park, which was all walking and standing, and later walked up and down the street several times during our block party. Sunday night my feel throbbed. Guess it's my body's way of telling me that 1) I need more regular exercise, and 2) I weigh too much for my feet to handle for long periods. Ah well.

Somehow I either turned off the alarm in the morning or didn't set it correctly, so woke up about an hour later than we meant to. Fortunately we still had time to pack up and have breakfast before dropping the girls off at Ellen's. By the way, I have a new love... Hyatt Place. I had never considered staying there before but ended up in one last month (thanks Michelle) and we all really liked it. So we stayed in one this trip too. We really didn't have time to enjoy the flat screen tv or the pool, but maybe next time...

We ended up running a bit late for the appt - were supposed to be there a half hour early but didn't leave in time. Then, we drove around the parking garage for a bit until we found a space. Upon entering the garage, we were both shocked that we didn't have to get a ticket, in other words, the parking was free. Free parking is not part of the Cleveland Clinic experience, at least on main campus. Of course we weren't at the hospital itself... anyhow, we checked in at registration and then headed up to see the doctor. A nurse took a history from me, then Dr. O's nurse practitioner talked to us for a while. She went over the HDIL2 program, and asked a number of questions about my cancer history. At one point she asked how I was feeling about all of this, and I started to cry, thinking about my girls. They are the biggest reason that I am looking to put myself through this hell. It's not that I don't consider my life valuable for myself, or for Jim, or for my family and friends. But the very thought that my girls might have to spend any part of their childhood without their mom enrages me; the unfairness of it is beyond belief. And then I get angry on my own behalf. It was always my dream to have a family, and I love mine more than I ever imagined I could. The unfairness of having THAT cut short infuriates me. I guess I need to channel that anger into kicking the cancer the hell out.

I relaxed after my cry and we talked some more. Then Dr. O came in. He talked more about the program, in terms of what pre-testing I will have to do in order to be approved for the treatment. I have to go through a number of tests and procedures, all before my scheduled admission date of September 10.

Up first is a MRI of the brain - I kind of hope they find one in there...
but seriously, they need to see if I have any mets to the brain that we don't know about. Nobody thinks they will find any, but if I do have them, the HDIL2 is off. So I need to have that first. Dr. O likes to have his patients go into a wider MRI, so in order to get that done right away, my appointment is on Friday, at OSU, at, get this, 9:15 PM. Yeh, PM, as in bedtime. And since I do better in the tube when I have taken some xanax, I will not be trying to drive 2+ hours home after that. Instead, Nurse Ellen has graciously agreed to drive me to and fro as well as to house me for the night. Thank goodness for wonderful friends.

I also have to have a stress test, a pulmonary function test, CT scans of my chest, abdomen and pelvis, and a consult with a cardiologist, which includes an echocardiogram. All of this has to be done in Columbus. Dr. O explained that back when he was on staff at the Clinic, they got the idea to see what would happen if their patients had all their testing done at the Clinic. They found that the complication rate decreased by 95%. I was definitely sold by that number!

And as the piece de resistance, I will be having a port installed, to infuse the IL2. In fact, I will become a Power Port girl! Doesn't that sound better than a Power Puff girl? I thought that the idea of having something implanted in me would squick me, but turns out, not so much. I would say this is the first time I've had something implanted, but they put mesh in my side/abdomen during my resection in February. This will be the first time we *interact* with something implanted though!

It just sucks that I have to travel a lot over the next couple of weeks, which is disrupting my work life and my family life. Rebecca started first grade today (more about that later), which has us all excited. She is very upset about my being away over Friday night. And even more upset about the prospect of me going away for several days. I know we'll get through this, but it's heartbreaking to see her so upset. Carly doesn't really understand that much right now, but I anticipate that we will see more reaction from her as the time comes.

Assuming all the tests come back favorably, I will go into the hospital for 5ish days starting 9/10. I'll go home and then be re-admitted for 5 or so days on 9/24. This means I will be spending my 45th birthday in the hospital. Oh boy, that sounds so appealing. I actually don't care all that much; I am happy to celebrate my birthday with my family and VERY happy to be getting older rather than the alternative, but the day we do celebrate isn't a big deal to me. However, it's something I get to bitch about, so why not.

After these two sessions, I will go home for 8 weeks and then have new scans. If the scans show any of the following:
  1. all spots have disappeared (the dream scenario)
  2. there is shrinkage in the current spots and no new ones appear
  3. the current spots remain stable, with no new ones appearing

then I get to lather, rinse and repeat the two weeks of IL2. If they see any growth or new spots, I'm done.

There is another decision point, too. Dr. O offered me the option of taking part in a clinical trial. I would get the IL2 as above. Then, during the eight week break before scans, they would have me take an approved RCC drug, Nexavar. The thought is that the combination of the two drugs will increase the chance of response. However, the trial is a phase 1 study, which means that they are 'trying this out' on patients. This combo has not been studied before. According to Dr. O, they have only had a few people sign on to the study. I like the idea of helping to further medical science and have a family history of medical volunteerism. My dad was involved in two different clinical trials when treating his lung cancer. His father was treated with radiation for leukemia in the 1950's; he had to go to Columbus for the treatment which was at that time new, and very harsh since they didn't know quite what they were doing yet. However, my gut doesn't have an excited feeling about this trial. Also, if I would have to travel to OSU more frequently because of being in the study, I would be most unhappy, especially as the weather will start to worsen. I have driven I-71 in driving snow and never want to do it voluntarily! I have asked my Kidney-Onc group and Dr. Rini for their thoughts; we'll see if they say anything that changes my mind.

Friday, August 21, 2009

Mixed bag

Lots of thoughts floating around - I have been wanting to sit down and type them out, but never make the time to flesh things out. For now I'll put out there what I can and see what gels later on.

Rebecca starts first grade next week. She is nervous about the transfer to the public school, which is understandable. I am nervous for her, remembering how I felt at the beginning of each school year. Yesterday her school held an orientation that she and I attended. R really dragged her feet on the way into the building; in fact she stopped at the front door and murmurred "I don't want to go in." But of course we did... We met the principal and one of the counselors, learned a lot of things about life at her new school, and got to tour the building. Rebecca was most impressed by the library, which was really nice. My girl is so loving books these days, that I could see her almost salivating as we cruised the shelves. We also saw the three first grade classrooms, so she'll have an idea of where in the building she will be. As we walked to the front door to exit, she exclaimed that she "loves" her new school and that it's almost better than her old school. Relief for mommy! This afternoon they posted the class lists at the door so we stopped by after camp to see who her teacher will be. We learned that our next door neighbor will be in her class, as well as two girls she knows from her current school. This is great news. There is one other girl from her old school, who is in a different class. Rebecca was disappointed that the other girl won't be in her class because other girl is not going to the same after-school program as R, who will be taking the school bus to where she and Carly are now. Other girl will be staying at the school for their after-school program. We had considered that for R but she insisted on coming back to where she is now. It's probably the more expensive option but for her peace of mind, it's well worth it. Besides, since Carly is there, we only have the one pickup point and that is worth something in terms of time and money.

Carly is moving up a classroom too, into one of the pre-K rooms. I just learned about it yesterday, and she will be there full time next week. She has always transitioned well, and since they mix the classes at the end of the day, she knows many of the kids there anyhow. Plus, a bunch are leaving for K and so there is space. She's not quite four so she must be acting right somehow! Lately she's taller, bigger, and better spoken than before. My baby is becoming a little girl right in front of me. I wonder if we will be looking at K for her next year after all. She misses the state cutoff by 6 days. I have generally been against starting school young, partly since I was one of the youngest and HATED it. But Carly's personality is so different from what mine was as a child; I think that socially she will probably be able to handle it well. We will see in about 6 months or so how she's doing so we can look into testing.

She's excited about her upcoming birthday. We are going to have it at Chuck E Cheese, per her request. When Rebecca was four, we had a full-class party for her there, and now it is Carly's turn. I've already reserved it for 10/18, in hopes that I will not still be in treatment in Columbus by then. The birthday season is starting for her; tomorrow she's going to a party at Memphis Kiddie Park and next week two classmates who are cousins are having a joint party at one's house. What fun - I don't get to see her interact with her peers that much so I am looking forward to observing my hurricane in action.

I am nervous about my upcoming appointment with Dr. Olencki and about my future plans. If we go forward with the IL2, I have lots of logistical questions and thoughts. I have read from others who have gone through this that it is good to have someone there with you as much as possible. On the other hand they can't do a lot for you so it's hard on them to be there. For me, I would love to have Jim with me but it's far more important that he be home with the girls, maintaining their routine as much as possible. Besides, Jim is not one for spending a lot of time at the hospital bedside; never has been, so it would be extra stressful for both of us. One of my closest friends from childhood lives near OSU, and I have reconnected with another close childhood friend who also lives in the area, so I have people nearby who care about me. I think the idea of being far from home and 'stuck' where I am is what is lurking in the back of my mind. It's not like we're talking about a long time, but just the idea of it makes me a bit uneasy. On the other hand, the hope of a complete response keeps me from punting the whole idea.

So what is this HDIL2 anyhow?

The 'official' site is here -

This part of the site tells more about what it does - How does it work?

Here is a statement from their website: "PROLEUKIN therapy differs from other treatments for metastatic melanoma and metastatic kidney cancer because it's an immunotherapy. Instead of directly inhibiting cancer cells, it works to activate the body's immune system to help kill them."

This is important... renal cell carcinoma is not known for responding to typical chemotherapy. So it's not like I can get hooked up to a regular chemo and poison out all of the cells. Instead, the idea is to supercharge my body to do it.

Yes, it is super-harsh stuff, so much so that many facilities don't offer it anymore, thus why many of us have to travel for it. But I will be well-monitored and if any problems are detected, we will stop.

I've had two people in my life suggest two different alternatives, both faith-based in some way. I am debating whether or not to pursue these opportunities, for various reasons. One is the doctor whose healing service I attended in January. He also does a specialized kind of acupuncture in his office but he is expensive and there are no guarantees, except maybe more visits? heh heh The other is a charismatic evangelist; my friend offered to take me to one of his services. I can't decide how I feel about that one - need to let it 'marinate' as one of my work friends likes to say.

Thursday, August 20, 2009

So what is this HDIL-2 anyhow?






Here is a statement from their website: "PROLEUKIN therapy differs from other treatments for metastatic melanoma and metastatic kidney cancer because it's an immunotherapy. Instead of directly inhibiting cancer cells, it works to activate the body's immune system to help kill them."


This is important... renal cell carcinoma is not known for responding to typical chemotherapy.

Sunday, August 16, 2009

ACOR

ACOR stands for Association of Cancer Online Resources. According to their home page, "ACOR offers access to 159 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders."

I first heard of ACOR several years ago when one of my online mommy friends faced the devastating news that her then-toddler son was diagnosed with neuroblastoma. The information she learned from fellow list members (mostly parents of other children with the same cancer) was invaluable, and she had a support network of people who truly understood what her family was going through. I am happy to say that her son came through his treatments and is cancer-free, which is miraculous as well as proof that scientific breakthroughs do work.

When I was first diagnosed with RCC, she recommended that I join a kidney cancer list on ACOR. I did, but I quickly changed my status to no-mail (where no messages came directly to my email even though I was still a member of the list) because I couldn't handle reading about the problems people were facing as they were at stage 4. Fast forward a few years and I found myself joining the stage 4 club, so I started receiving emails again. I have learned so much in a short time; the folks there are willing to share their experiences, as well as information they have learned. Without the list I probably wouldn't be considering HDIL-2. (Eight days until my appt at OSU!) And I have made friends on the list, wonderful people from all over the globe. Since kidney cancer isn't one of the more prevalent cancers out there (thank goodness for all of you) there aren't as many resources available as there are for the more diagnosed cancers. I am truly grateful for the list being there, and for all the people who keep ACOR alive.

I just learned that ACOR is in need of financial help. It's distressing to me to think that this organization could be in danger of not being there for people on those 159 lists. This morning I made a donation and so I am asking you all to do the same. In these tough times I know it's hard to find extra $$ but even a little bit will help. Their about page lets you know that if you are in the USA, they are a 501(c)3 organization (so save that receipt!) and has a donation link... or you can go directly to the donation page.

I don't like hitting my family and friends up for cash too often, but I feel very passionate about this particular cause. Thanks in advance for your support.

Update on me and life in general soon...

Saturday, August 15, 2009

Because humiliating and shaming people is *such* an effective way to motivate them

PETA is up to its usual tricks again...

http://calorielab.com/news/2009/08/10/pet-save-the-whales-billboard-offends/

Read the comments below the article - they say everything I am thinking, and more.

Sunday, August 09, 2009

Remembers

Last night the girls and I took a walk around the block, which actually became a solo walk for me. Why? Because they kept running ahead of me in mini footraces. They would stop every few driveways, and as I approached, they would say "here comes Mama!" and take off again. So, it was sort of a solo walk.

However, at the beginning of the walk, Carly wanted to stay with me and hold my hand. As we walked, she asked me if I remembered something that had happened (already I forget what it was!). I did, and she told me "I have a lot of remembers in my head, Mama". Then our neighbor's dog, Sam, barked a greeting from behind his fence. Carly asked me if I remembered the time that Sam tried to get into our car and go shopping with us. This dog is not allowed to go loose; if he isn't in his fenced backyard, he's tied up in the front yard, because like our dogs, he likes to wander. I asked Carly if maybe she was remembering my sister's dog Olive, who HAS hopped into our car a few times. Olive and Sam look similar to her, as Sam is a Rottweiler and Olive is a black Lab mix. Carly insisted that it was Sam, and that I (Mommy) didn't remember. "Mommy, you only have two remembers in your head."

Saturday, August 08, 2009

Staycation almost over

And boo to that, indeed. My plan to win the MegaMillions jackpot last night, allowing me to have a forever staycation, did not pan out - I did not have even one stinkin' number correct. Ah well, nobody else won either so I have a fresh chance on Tuesday night.

It's been a fairly quiet week but very relaxing. Originally the plan was to go to PA for a couple of days to take the girls back to Idlewild, but Jim was somewhat indisposed last weekend and traveling was not advised by his doctor. He is better now and I am hoping we can sneak away for an overnight trip so that the girls can still go. They were really understanding about missing the trip but still want to go, which is more than fair. We just have to plan around everything else, is all. In general, we all benefitted from some down time. Today is Jim's birthday (Happy Birthday, sweetie!) and we are celebrating by going to the annual 'old dog party' hosted by one of our favorite organizations, Sanctuary for Senior Dogs. I had to miss the party last year since I was just 3 days out of surgery; I am really looking forward to it this afternoon. Fingers remain crossed that it doesn't rain. Tomorrow we will celebrate August birthdays and anniversaries at Jim's folks' house. Our monthly family dinners are always a lot of fun; the cousins get to run around and play together, while the adults catch up with one another. When I was growing up, family celebrations consisted of my nuclear family (mom, dad, sister Barbara and me) along with my paternal grandmother and uncle. My mom's parents lived in western Pennsylvania, so we didn't get to see them that often. Then my grandmother died when I was seven, and our contact with my grandfather grew more sporadic. He remarried and moved into his new wife's house; she was a very nice person but we still didn't feel a great connection. My mom had one brother, who I last saw at my grandfather's funeral in 1980. I have no idea where he is, if he is even still living. In recent years, one of my mother's cousins reached out to Barbara and me, and so we have gotten to know her and her family, which has been lovely. But I am so grateful to be able to be part of Jim's larger extended family. Not only are they welcoming and wonderful people, but so are the other in-law families that make up the big extended family we all share.

Ok, so enough with the sentimentality for now. I am gearing up mentally for my visit to The James later this month. Yesterday I received a packet of information about my visit, along with a bunch of forms to complete. I had to laugh when looking at them, as the information they are requesting is all the same stuff I gave them by phone when I initially contacted them! *sigh* In good news, I contacted my health plan administrator at work about how to get any treatment at The James covered at our tier 1 rate rather than at the tier 2 rate. Since the HDIL2 treatment is not offered at any of the Cleveland Clinic hospitals, it's possible to have it covered outside CC as though it were. My administrator contacted Dr. Rini and Dr. Olencki at the James and it's all worked out. The hospital part will be covered at 100%. Doctor visits are $25 copay. As tier 2, I would have a $500 deductible, then 70/30 coverage with and out of pocket max copay of $5,000. And if treatment should run into 2010, those figures reset. So I am super lucky for sure. One of my online RCC friends says that IL2 is about $10,000 *per dose*, and people can get up to 15 doses in a treatment cycle. Wow...

Sunday, August 02, 2009

Travel Dreams

Places I would like to go, in alphabetical order

Alaskan cruise - my in-laws went on an Alaskan cruise several years ago. Once I saw their photos and heard their travel tales, I was hooked.

Australia - would like to see Sydney, and possibly climb the Sydney Harbour Bridge, though Jim thinks I am crazy for wanting to. Then again, he did not join me on the glass floor at CN Tower and would be unlikely to join me on the Skydeck ledge at Sears (I have a hard time calling it Willis) Tower. Lots of other great things to experience there too. But my most important reason to visit Australia is to meet my childhood pen pal, Berni, who lives near Melbourne.

Beach vacation - anyplace with a nice beach and a place to stay and relax. We went to the south Jersey shore several times as kids, to Stone Harbor, which my mom had visited as a girl. In 2001 we went with my family to its sister town of Avalon. Things had changed a LOT in 20 years - can you say outrageous McMansions? - but the beach was still wonderful, as was sitting on the second floor balcony of our rental house, listening to the surf and the gulls. It was my dad's last vacation and his last visit to an ocean, which made it bittersweet, but we still all had a lovely week. I want to take the girls on a beach vacation. Yes, we live on a large freshwater lake; unfortunately the water here is NOT fresh in terms of germs/bacteria; even the beaches are getting horrible ratings. Besides, there is just something about the sea air...

DisneyWorld - at least once, right? I know the girls would vote yes on this trip. We actually considered a Disney cruise this spring but decided against it. Maybe next year will be the year - sounds like a fun spring break trip. I'd also like to visit the Mouse in his house.

Hawaii - always sounds good. My dad was stationed there in the 1950s when he was in the Navy. At first he was disappointed to not be out at sea, but quickly fell in love with the then-territory. He refused to return there later in life because he knew how much it had been built up and wanted to retain his memories from his youth. I would just like to experience it.

Ireland - we actually had an opportunity to go with some of our family several years ago, but I was due with Rebecca at the same time so we couldn't do it. Hopefully we can get a family group together again at some point so that we could experience it together. I do have Irish ancestry of my own, in addition to having an Irish married surname. My sister and I briefly reconnected with some relatives from that branch of our family tree some years ago, but are no longer in touch with those folks.

Niagara Falls - yes, I have been there before, several times, but want to go back and take the girls. Jim and I went there on our way back from a vacation in Toronto early in our marriage. In general, Jim has seen more of the United States than I have, but somehow had never made it to see the Falls. He had told me that he was not completely wowed by the Grand Canyon, and felt that his family had spent more time there that he would have liked. So I was concerned that we'd arrive in Niagara Falls and he would be similarly bored. We got there, parked and took a tram down to the falls. As we stood there, he was quite impressed and told me that he found it very cool. Big relief! We were only there for a few hours but I love watching all that water so much that I could just sit and stare. Plus the people-watching there is really fun; there are visitors from all over the world.

Western US desert - Jim and I have talked about taking a RV vacation at some point. I want to just stop and stare at the beauty of the deserts. I have seen photos from friends who have traveled that way and they are breathtaking, which tells me that the live experience would be so much better.

I realize that I haven't mentioned most of Europe, any of Africa, Asia or South America in my places above. I would be happy to travel to those places as well, but right now I don't feel a strong pull to any particular destination in those places. Should I ever win big lottery dollars, though, I can afford to go to all of my second-tier destinations.

Where would YOU like to go? Want to join me on any of the above?