Sunday, March 19, 2006

For those who comment

As many of you are aware, this blog has a "comment" option, where readers can post a comment to me. The comment remains on the website, and also comes to my email account. They are always welcome and appreciated, although sometimes they come to me from anonymous sources, where there is no opportunity for me to reply directly to the author.

So, first of all - for those of you who do comment: THANK YOU! Your comments have been supportive and encouraging, and they always make my day. I wish that I could reply to you directly, but for now, here are some ((((HUGS)))) and big thanks for you.

One comment came from someone who is LDS, whose husband was also diagnosed with glioblastoma multiforme. They are also adoptive parents and the husband served in many of the same callings that I have held. He has been a year out with no recurrence. I would LOVE to find a way to get in touch with these people!!!!

Other cancer survivors or loved ones have contacted me, and I appreciate that very much. Hopefully we can share stories of survivorship for a long, long time.

Some have asked questions in their comments. So here are some of those questions along with my answers:

Q. Are my children's adoptions "open" adoptions? Do we send updates to the birth parents, and are they aware of my cancer?
A. Both adoptions are considered "open", in the sense that we have had face-to-face contact with the birth mothers, and we have each others' identifying information. It works well, because we are all secure in our roles relating to these wonderful children. Birth moms gave these children healthy, beautiful bodies, and placed them in loving families. Our job took over shortly after birth. We are to be their parents, and care for them and raise them and love them. (And help them become part of a for-evvvv-er family.) We have email contact with Jacob's birth family, and we love sharing photos and updates so that we can each see how this process has blessed all involved. We love his birth mom so much and enjoy hearing how she is doing. Emma's birth mom has been less communicative for now. We sent her some pictures and encouraged her to write us back, but we haven't received a reply. Maybe someday she will write us, but we want to respect her privacy and her feelings, which are probably tender at times. We love her, too. Jacob's birth family knows about my cancer, and is praying for me. Emma's birth mom does not know about my cancer.

Q. What is a "gas pump virgin"?
A. ME! What this means is that I have never pumped gas. NEVER. (So hey - we know the brain tumor didn't come from petroleum fumes!) When I turned sixteen, one of my friends gave me a book called, Real Women Don't Pump Gas. It was a humorous book, but I decided to take it seriously. Plus, at the time I was dating Jared, who was already practicing his Prince Charming skills. He always made sure my tank was full. And when he spent two years serving a mission in Japan, I didn't have a car for most of that time. I was going to college and I lived close to campus. And when I did have a car, I learned that there was a gas station near campus that did full-serve at no additional charge. After I married my Prince Charming, he let me continue this silly obsession. And now that I can't drive anyway, the matter is moot.

Q. How would you prefer people to talk about what you're surviving? That is, not mention cancer by name and just keep on "as normal", or mention it straight out in conversation, or say "I'm sorry that you have cancer", wait until you bring it up - or something else? Or does it change by the hour?
A. I happen to be an open book about this kind of thing, in case you haven't noticed from my blog! On the other hand, I know that in this situation it may be hard for people to know what to say, especially since it seems like a very touchy subject. But for me, it's such a part of my life that I am more desensitized to things than most people would expect me to be. It is surprisingly "not touchy" for me to address. I have had many people initially come up and tell me things like, "I heard about your situation, and I just wanted you to know that you're in my thoughts and prayers." And that is really, really nice to hear. Or people who have already broken that ground might ask, "Hey - I've been thinking about you - how's it going for you today?" That's a good one, because it's specific and easy to answer ("I'm a little tired today, but I'm excited because I'm feeling a lot better than I thought I would be right now.") I've had curious people ask me detailed questions about certain aspects of my treatment, or the testing I will do, etc., and I'm totally fine with that. Specific questions are always easier to answer than than the general "How are you?" (I always think, "Fine...except, oops - not really fine, because I have cancer.") As far as whether you should mention cancer by name, it's really okay with me to hear it. It is what it is, and it's no big deal to call it what it is. I am a little more cautious about what is said within earshot of my son, though, because even though we have prepared him with "the talk", I don't want him to overhear things that might scare him. But as I said before, I'm generally an open book about this and don't mind people approaching me and asking me about anything, or sharing their love and best wishes and hugs - and prayers!!!!

For those who comment, again - thank you. If you ever want to contact me directly instead of using the comment feature, please feel free to email me at (I'm going to spell out some things so that it doesn't look like an email address to spam machines who crawl through this site): kristaoakes(at)gmail(dot)com


Kari said...

Thanks for addressing those questions as I have often wondered about some of those things myself. The more I get to know you, the more I feel myself rooting for you and I continue to pray you will not have a recurrence for the sake of you and your family!

I hope you have a GREAT day!!

Selwyn said...

Wow - 2 of my questions answered! Thank you! As always, I enjoy your blog and am particularly relieved now it's back up and running!

Have a groovy day=)

Krista said...

I was the one that asked about the adoption stuff--we have an adopted daughter after infertility (5 m/c) then had a son 7 months later! I am 42 next month with two very little ones. Thanks for answering. I wonder sometimes what we would do since our adoption is open too (but the birth parents have lost interest for now). I have another question in case you ever want to have a post on your weight history (and loss)--I have mine. I know you have mentioned how that was a big part of your life and I am sure that losing weight and having regular exercise really helps you to feel more positive about outcomes--and it gives you even a healthier body to fight cancer! Thanks again!

Anonymous said...

Hi Krista,

I'm the one you are looking for! It's my husband that has GBM. We are Brett and Lorraine Larson in Glendale, AZ. You can email me at Brett is doing well, just struggling to get off the steriods. He had a massive brain infection in August and has had to be on Decadron since that time. Infection cleared up great - but had to have the long term steriods. They taper him off then he has to go back on. MRI's are still clear. Hope to hear from you.


Marnie said...

Hi Gas Pump Virgin.
Remember that time in high school that we went to the gas station and you just sat in the car, waiting for someone to come out and put the gas in for you? And then the guy came out and yelled at us for being such idiots. I was embarrassed and started to just get out and put the gas in, but you wouldn't let me 'defile' myself.

WWW: We were weird.
Fun memories.Jam Today!

P.S. You look great. Looking forward to seeing you in person.