Seeking God Knows What

We had a nice time this weekend- at least I did, and I think T did as well. Pastor Frank gave three talks about the Holy Spirit and one on “How to make the most of the rest of your life” and we had some good small group discussion, although as usual we sometimes digressed into completely unrelated topics.

Based on the conversations we had, I think, T is closer to realizing the meaning of making a commitment to Christ. Good to hear, although, I admit I was hoping he might actually take the leap this weekend.

That was one thing I prayed for this weekend, to remember that these things happen in God’s time rather than in mine. Patience is a virtue, right?

This weekend is the retreat weekend for the Alpha class we have been taking on Sunday nights. I missed out on the retreat last fall because we had to go to our friends’ wedding.

The small group we are in is nice, has two other young couples (one roughly our age and the other is about 7 years younger), and then two single young women a little younger than we are. There was another couple but they seemed to have dropped out. I think they will be a fairly decent group to spend a Saturday/Sunday with.

I hope this will give T a good opportunity to “gain some knowledge”, since that is what he claims is keeping him from making any sort of decision about Christianity. We have had some good talks on the way home from class on Sunday nights but he always says he doesn’t know enough to make any sort of decision. He has a hard time with the intangible concepts of Christianity.I have encouraged him to read the Bible starting with the Gospels, but he really has not followed up on that and I think he has seen a change in me since I made a real commitment to it in November, but I guess it isn’t enough for him to realize all of the benefits of taking that leap of faith.

Yeah, I’m mixing it up cause I don’t feel like finishing my survivorship answers at the moment. I have a hunch that I might get a question from PH about what is so different about being a cancer survivor than anything else, that I let it “color” my view of life? Something I’ve been thinking since I wrote- but I’ll get back to it. Oh, and PH, if you are reading this, I heard a song just for you “Cheney’s got a gun”

My brother has a blog (a livejournal one) that he doesn’t write in very much. I just got to it through T’s own livejournal which he rarely writes in. It is weird to find out more about who your sibling is through their blog than in real life. My brother has never been much of a talker. Granted with four rather talkative sisters (I’m the second oldest- girl, girl, girl, boy, girl), he did not have much chance of getting a word in edgewise. But even at times when we were alone, he never had much to say. His world is music. Initially playing guitar, double bass, electric bass (he is incredibly talented and primarily taught himself how to play with the exception of double bass- oh, and he learned to play the tuba in high school just because the band needed on and he and the school band director were on good terms), now he is much more involved in recording and sound work.

So far, he is the only one of us kids to not follow an academic major- mine was political science, my younger sister’s was English literature, my older sister is in the process of a psychology major and my youngest sister, a high school senior, is also considering English. My brother chose music and a field in music he could actually get a job and do what he studied. Of the two of us who have graduated from college, neither of us are pursuing a job related to our major. Mine is part-time marketing support focusing primarily on one project. Pretty clerical and, at times, very tedious and frustrating (but that could be a whole additional entry about the project and the company I work for!). Definitely not something I love. I’d like to work in a library as a part-time job because I love books. I worked retail for 7 years and I would consider going back if I could find a retail job that paid enough- the pay gap between boring admin work and retail is too big. If I ever get financially sorted out and a chance to go to school without having to work and be mommy (I don’t think I can cope with all three- so school is out until we can afford to lose my income), I would like to get into pediatric nursing and also get certification in child life.

Hmmm…

But we also want to adopt at least one more infant and I’ve considered talking to T about us adopting a sibling group of two or three after our first two are both in school. So the money has to get worked out first and the adoption family thoughts might lead to me being a stay at home mom, which I would also like (my family thinks I would get bored being a SAHM but I haven’t decided yet!). I wouldn’t want to “waste” the money on getting a degree when I’ll end up spending the first years of having it staying home- so it might be a goal down the road when I’m 40ish and my kids are less dependent on me. My aunt got her teaching certification after she was forty- and that leaves plenty of time to have a nice career (and help with kids’ college costs).

I’m also thinking that if I did end up becoming a SAHM, I might be able to become more of an advocate for childhood cancer survivors, do some volunteer work with a school or church or hospital- or even somewhere lIke the Ronald McDonald House near DeVos Children’s Hospital.

Just some random thoughts about the future…

I received in the mail yesterday the list of questions to think about for the survivorship panel. The questions really aren’t surprising considering the topic “Thriving as a young adult/childhood cancer survivor” but it is a good thing to receive them in advance so I can organize my thoughts about them (I’ll probably have to pare down the quantity of things I want to say!) and the topic in general.

What was your diagnosis?

Wilms’ tumor, favorable histology, stage III due to tumor spillage during radical left nephrectomy.
Treatment: 16 months chemo (weekly Vincristine and dactinomyacin every 9 weeks for 4 days -that’s my memory of it anyway!); 6 weeks weekly full abdominal radiation. I’d have to look up the rads of radiation and the amounts of chemo. Part of National Wilms’ Tumor Study Group Study #3. On looking this up now, I was in a group that did not receive doxorubicin, now known to cause heart problems, so I was “lucky” in that sense.

What has the primary “late effect” been?

Physically, premature ovarian failure caused by the radiation treatments, resulting in infertility. Linked to that is that I’m on the edge of osteoporosis because of low hormones during my “growing years”.

What do you think has been your biggest challenge in regard to your cancer and recovery? Either physical or emotional.

My biggest challenge has been far more emotional than physical. Physically, I am as healthy as the average 29 year old woman. I have a faded scar that healed well, I do not have scoliosis as some do from the radiation treatments, or really visable muscle atrophy in that area. The ovarian failure is only visible in the sense that I am on hormone replacement therapy, same with the osteoporosis. Even with the low density of my bones, I have never broken anything. I used to be “jealous” of the kids who got to have a cast or crutches- I never even sprained anything!

Emotionally, it is entirely different story. I have a genetic predisposition to depression and anxiety (my mother has been severely depressed, suffered from intense panic attacks and anxiety over the years; I suspect my maternal grandfather has had some social anxiety- he was never much of a participant in family gatherings or large crowds, hardly ever travels anywhere and my grandma goes a lot different places)but I do think being a cancer survivor exacerbated it, especially as I grew older and more capable of understanding what had happened.

My anxiety level is usually pretty high. I have to deal with a lot of stress prior to visiting someone in the hospital. I hate going- sweaty palms, nervous butterflies, the whole deal. My younger sister had a serious staph infection when she was 12 and I was 16. I managed to make it there once, she was having hallucinations from the morphine and high fever. I absolutely “freaked out”, probably the closest I’ve come to having a real panic attack and had to leave.

I’ve also had a lot of struggles with depression. The onset was probably shortly after we finished our attempts at IVF with donor eggs but before we started the adoption process. I was finally forced to get some help about two years later when I suddenly, and without reason other than I was on the edge of breaking down, quit my job. A completely “unlike Erin” thing to do. I’ve been on an antidepressant ever since which has helped and visited a couple of different therapists. Most of the time with therapy, though, I get caught up in thinking that they don’t understand the perspective of someone who has been through childhood cancer on life, so I don’t stick with it. I have been blessed with a wonderful family doctor (PH) who has listened to my rambles, in particular the last 6 months, via e-mail because I really don’t want to go back to a therapist- I have some other trust issues with therapy due my mother’s depression/anxiety treatments. He, at least, gives me a different perspective on my thoughts. Not that I always agree with what he says He has also helped me refocus my life as being a life lived in and for Christ.

Yikes, four more questions yet to answer and I still have more I would say on this one!

The University of Michigan Pediatric Oncology and Long Term Follow Up clinic (whew!) is hosting a Young Adult Cancer Survivorship conference at the end of April. I got a Save the Date postcard earlier this year and put it on my calendar. A couple of weeks ago I was invited to speak on a survivorship panel. I’m really excited but slightly anxious as speaking in public is not my forte. I usually turn five hundred shades of red, even when speaking to people I know and in small settings, but I really want to do this.

This month marks 23 years since I was diagnosed with Wilm’s Tumor. I was 5 1/2, my older sister was 8 and my younger sister was almost one. She actually turned one the weekend of my surgery (I think I was still in recovery on her actual first birthday). One thing I remember from the time of my initial treatment was a visit from my dad with my sisters. At the time my mom and I were staying with my mom’s sister and her husband who lived near Ann Arbor because I was having weekly radiation treatment, and I think daily chemo treatment. Our hometown was about 3 hours away from the hospital and this worked out better for my parents. My sisters stayed from the time of my surgery until about 6 weeks later with our paternal grandparents. Anyway, my dad brought my sisters over to see us and I remember quite vividly my mom calling to my younger sister to come see Mommy and she wouldn’t go. I can still remember the look on her face, my mom’s face when that happened.

And I felt as if it was all my fault.