Quick Update on all things ever.

So much has happened. Sorry I have not posted. My treatment has been strangely uneventful, and not nearly the horror show Hollywood portrayals of chemo would lead one to expect. Mostly I am fine. Pol has been there at my side for every single treatment and all the fun in between. (Hey Pol…I love you. Thank you for being by my side through this. You make it all so much easier.) In general,  have much to be thankful for and I am thinking that 2013 will be my best year yet. So here is the quick update.

Hair: mostly gone but comes back as peach fuzz between treatments a bit, then falls out a bit. I still have eyebrows and eyelashes, so mostly, with a little creative scarf tying, I pass for devoutly Muslim rather than seriously ill. This is ok and I am actually more comfortable with this. The cancer stories I was collecting from strangers were sort of bringing me down. Not because I don’t care about their experiences — but because I have a bit too much empathy sometimes. But just to contrast,  I met a very nice Muslimah lady the other day and chatted about modest fashion (something I am rapidly falling in love with) and gave and exchanged compliments and felt PRETTY for the first time in a while, and got some cultural insight as well. Did you know that followers of Islam are required to greet anyone who appears to be a fellow Muslim, and required to return the greetings of fellow Muslims with an even more generous blessing in return? What a lovely and practical commandment. I have learned the appropriate response, now, for the next time it happens to me. Although the easiest thing to do is simply to say hello first in a way that is polite but identifies me as a non-Muslim and saves confusion. (Or maybe creates confusion? Certainly engenders discussion, which I enjoy.) Still, it’s nice to know the response in case I need it, and it certainly is lovely.

And the holidays. Thanksgiving: took Pol to meet my family. They loved him and it was awesome. Saw some old friends and that was also awesome! Christmas: got to meet Pol’s extended family. I loved them and it was awesome. New Years: Spent with much-loved Bozeman friends, and it was awesome.

Chemo: progressively less awesome, but beats the alternative. No really seriously debilitating side effects, but work is a struggle the week after treatment and I am very tired. Fortunately I have an amazing boss who is a good friend and takes it as easy on me as she possibly can. Thanks, Sadie!

One funny anecdote: during the very first chemo treatment, they were very concerned about the possibility of horrible side effects. My “horrible side effect” was…drumroll please…my right index finger began twitching and spasming in the oddest fashion. HORRIFIC!!! This was enough to bring the whole treatment grinding to a halt while they paged the doctor, who quirked a brow and sort of bit his lip and said, “I have never observed that particular reaction before.” And then we carried on. I still laugh when I remember the look on his face. Solid gold.

And speaking of thanks, huge thanks go out to Keith Suta, Ryan Cassavaugh, and the Don’t Close Your Eyes Live Radio Theatre crew, who held a tremendously successful benefit performance for me in mid-December and greatly helped to defray my health insurance costs and other expenses. I love you guys!!! Dear readers, please visit their website, go to the vault, and download some episodes for free…share them with all and sundry…they deserve to be noticed in a big way for their talent and for their kindness.

Thanks, also, to the others who brightened up my Christmas season…Keith and Sarah, Ryan and Sadie, Sherry & Rudi, Marcie, Linnea, Melanie, and the amazingly talented author, Ms. Cynthia Hand, who has a new book coming out very, very soon. I would claim to be on pins and needles…except I GOT TO READ IT ALREADY, thanks to her thoughtfulness. Squee!!! No other response is really appropriate, except….THANK YOU, CYNDI!!! Oh, and here are links to her books. They are fabulous, fabulous young adult fiction featuring a really tough and really relatable teenage female heroine who actually takes charge of her own life and destiny in the most empowering way. I cannot recommend them enough for anyone who has teenagers in the house. Or adults, for that matter. I have quite a few adult friends reading and loving these novels as well.  The books in order: Unearthly, Hallowed, Radiant, and Boundless. Do not delay. Get these books. Read them. Cry a lot, and then feel strangely happy about it all. I did!!

I think that’s about it. I am over 1/3 through chemo, and after my next treatment, they will PET scan me again to see how much progress has been made. I am looking forward to it, and I will let you know how it all goes.

“You will lose your hair.”

So since I first posted on facebook about my lymphoma diagnosis, many things have happened. This will, consequently, be a long post. I will try to keep it shorter in the future, though.

First of all, as we all know, Obama won! Whoo hoo!! I would like to thank the many people who voted blue solely for my sake. There are actually quite a few. Apparently, one of my sisters convinced ALL her coworkers to change their votes after hearing my story. Amazing. I get a little choked up every time I think about it.

I cut off my hair and donated it to Locks of Love. The Loft Spa in Bozeman gave me an amazing complimentary haircut. I cried, a little. And then the stylist almost cried. I had to stop crying so she wouldn’t cry. People in this town are so very kind. It is stunning. Please go to The Loft if you need a haircut in Bozeman. They are expensive, but they also have hearts of gold.

Also, Pol and I finished up my application for the high-risk pool and got it mailed off to Helena, so after the 1st of December I will officially be insured.

I have had all the poking and prodding and testing and staging completed. Monday I have to undergo surgery to install a port in my chest for my chemo treatments, and Friday I start chemotherapy.

I have barely worked since my initial surgery, which was last Tuesday. I went in for a few hours Wednesday afternoon, but by Wednesday night, I was in the ER because my incision site had swelled up, and the side of my face was about three times the size it should have been. It turned out the doctor had to remove small bits of my salivary gland, as well as some muscle tissue, when performing the biopsy. Unfortunately, saliva then began draining into the wound, which caused the swelling. And my muscles were stitched together and having a hard time compensating for the extra weight on my neck. All in all, this was pretty miserable and I spent the rest of the week conked out on pain pills. Then, after I got the diagnosis last Friday, the testing began,  and I have been in and out and all over the hospital instead of at the frame shop. I finally got a few hours in on Tuesday, a few on Wednesday, and nearly full days after that. But all in all, I missed a week of work. It’s going to be an ouch.

But there has been a lot of good news along the way. The short version is: I have a highly curable form of cancer which responds to treatment rather quickly. They rate my odds of survival at 80% or higher, even though I am at stage 3B or 4B. I’ll take that!!! If you want to hear all the details about all the tests and all the hilarious and not-so-funny things I learned, read on.

The Lymphoma Thing (repost from Facebook)

For those of you who didn’t see it on facebook, and just so this makes sense. I originally posted this on FB a few days back. But I am going to move the cancer chatter over here, in order to make it easy for those who want to know to follow along, and to avoid depressing everyone else. Here’s the original note:

Whee! Hodgkin’s Disease! Yup. I have that.

Hi everyone, and sorry for the shock title. There’s just no good way to put these things, is there? I try to go with humor. Unfortunately, this is not a joke…I was diagnosed yesterday morning with Hodgkin’s Lymphoma. I have to undergo more tests in the next week, to determine how quickly we caught the disease and what my prognosis might be, but I have to tell you, it’s a relief just to HAVE a diagnosis. I’ve been dealing with pretty classic lymphoma symptoms since about mid-June…fatigue, swollen lymph nodes, a cough that would not quit, fevers and night sweats…so it also wasn’t much of a suprise. But it did take a while to diagnose, mainly because after my lymph nodes began giving me trouble, I also developed a kidney stone and then a summer cold, both of which clouded the picture a bit. However…we got there in the end, now we know, and we get to move forward with treatment. I’m doing all right with the information. I’m in problem-solving mode. I’m donating my hair to Locks of Love and things like that. I am sure it will hit me and I will be sad and angry, but so far I am ok.

Also, as some of you know, last Tuesday I had a surgical biopsy to remove said lymph nodes, and there have been some unfortunate complications…some of the inflamed nodes were very close to a salivary gland, and I am experiencing some incredibly impressive facial/neck swelling and discomfort as the damaged gland drains.  So that’s going on as well, for those of you who are local and might run into me on the street. If I’m not chatty it’s probably because my jaw aches and/or I am a little out of it from pain meds. I’m also masking the swelling as best I can with scarves…and on that note,  I would like to take a moment to thank the dozens and dozens of Muslim women who have taken the time to put up videos on YouTube on absolutely GORGEOUS ways to tie headscarves. You ladies rock. I would be embarassed to leave my house without your help.

As far as my prognosis,  I know a lot of you will have questions, and since most of my friends and family are far away I will probably start a blog to keep people updated. In the meantime, I don’t have a lot of information yet. But I’ll let everyone know where that information can be found once I have it.

I also know a lot of you will want to help. Yes, you can pray for me if you believe in the power of prayer. Of course you can donate to appropriate causes. Apparently the ‘designated ribbon’ for Hodgkin’s is purple, if you want to wear or display one, athough frankly I think ribbons are a little silly. I’d much rather have a hug next time you see me. For my politically active friends, though…I need to ask you to do something else to help me, as well. And this is a very concrete thing that you can do immediately. This coming Tuesday, PLEASE GO VOTE FOR ME TO KEEP MY HEALTH INSURANCE. It is genuinely in peril, and I am going to be very frank about explaining my exact situation, even though we all get a little uncomfortable talking about money and politics and whatnot. I need to tell you what exactly is on the line for me next week and I need you all to know that you have the power to help me if you choose to do so. I should add that I don’t really expect to change anyone’s mind politically. I know my very conservative friends are just as passionate and heartfelt about their beliefs as my liberal friends. So I suppose I’m mainly talking to those on the fence, here…or those who are disillusioned and thinking about sitting out this election. If you WERE thinking about staying home Tuesday…please, please read this and go vote…you may not be voting for the candidate of your dreams, but you will be voing for the candidate who is keeping me alive. And should any of my conservative friends find it in their hearts to overcome their concerns and change their votes in order to ensure that I have a chance to get the treatment I need…I would consider it a blessing and a miracle and I would thank you from the bottom of my heart.

Here’s why I am asking:

I have in front of me a document labeled “MCHA Traditional Plan Application and Federal High-Risk Pool Application.” Ugh. I am in the process of filling it out and submitting it to Blue Cross/Blue Shield of Montana. I am attaching two pathologists’ reports attesting to my diagnosis. Once this document is processed and approved, I will have health insurance for the first time since about 2007. Most crucially, this health insurance (the Federal MAC plan or High Risk Pool) will cover my cancer treatments, as of December 1, with no pre-existing condition exclusion.  I am betting you have never heard of this insurance plan. Yesterday  when I explained to the doctor why I needed a copy of the diagnosis, HE had never heard of it either.  However,  it exists and it can be found here: https://www.pcip.gov/ if you would like more information.

But back to my situation:

1) Why didn’t you have health insurance before?

I work for a small business. A tiny business. There are only two of us and neither of us has employer-sponsored health insurance. Before I worked for this business, I held temp jobs for years and years. Then I got a full time, permanent job. Hooray! I love my job, and I feel darned lucky to have a job in this economy, and I wasn’t about to leave it over a question of health insurance benefits. So I applied for insurance on my own and was rejected multiple times, for pre-existing conditions ranging from kidney stones to the most recent rejection letter, “a back injury requiring ongoing physical therapy and an undiagnosed condition” (the now-diagnosed lymphoma). So the simple answer is, I am considered uninsurable. Doubly so now that the c-word is in the picture.

2) Doesn’t Montana have a state high risk pool you can apply for? Why do you need the Federal version?

Yes. I have the premium schedule in front of me, in fact, as it’s all the same application. The cost for the MT state high-risk insurance for a 35 year old is $604 a month. This is where I make people uncomfortable, and I’m sorry, but…folks, that would be almost half my take-home pay each month. And I would still have to meet a deductible, I would still have co-pays. The insurance would cost so much that I would barely be able to use it, and if I did use it, I would have a choice between insurance and everything else, like food and gas and a roof over my head. And to top it off, it turns out insurance costs don’t count as “expenses” when you’re applying for things like public assistance.  In other words, I can’t pay $600 a month for insurance and then make up for it by getting food stamps and rental assistance. I don’t qualify for those things as long as I can keep working, and I have to keep working to pay for insurance, no matter how tempting it might be to stay home and just be sick.

So then the flip side is much simpler:  the federal version of this insurance, created under Obamacare, costs just under $300 a month. Still pricey, but not when you’re faced with paying for cancer treatments. Even if I have to cut down my hours at work (and I’ll probably have to) I should be able to keep paying that $300.  Even in perfect health, I could not have managed $604 a month. It is utterly, utterly out of the question now. But $300 I can do.

3) So you’re getting Medicaid or Medicare?

No. I do not qualify for medicaid or medicare. I am paying $300 a month for insurance through Blue Cross/Blue Shield of Montana. I will have have a $2,500 yearly deductible, a 70/30 copay, and a cap on yearly benefits and out of pocket costs. It’s just plain old insurance, not even the best deal. Still, it will allow me to seek treatment. Yes, it is partially funded by the federal goverment. But believe me, I will be chipping in every penny I’ve got, just to cover that deductible and those copays. It is pretty far from a free handout. But before Obamacare, I COULD NOT GET INSURANCE AT ALL. And if Obamacare is repealed next January or February, Blue Cross will drop me like a hot potato, or put me on a plan that is so expensive that it will amount to the same thing. I might die, I might not…Hodgkin’s is a weird disease. Probably, though, I would die.

4) Can’t you just go to the ER?

LOL. No. The ER does not provide chemotherapy treatments. I think we all know this. But just in case you didn’t. LOL. No. I can’t just go to the ER. It does not work that way.

So there you have it, that’s my situation. I’m pretty scared about it all, or I wouldn’t be asking for your help. I hate that I am sick, and I REALLY hate the timing of it, because I am not a very political animal. Oh sure, sometimes I’ll argue a point with a trusted friend…but in general I just keep to myself and go vote on election days. I dislike making the details of my personal situation so very public, I dislike talking about money, and I dislike asking for assistance. I would rather deal with this on my own. But due to the timing…I really, really need EVERYONE’S help with this one. Please go vote for my health. And if after thinking it over, you can’t do it…well, I guess all I ask is that you leave me in peace to deal with this situation as best I can.

Thank you, all of you, for your support. I know you love me, and I love you too.

Anne Rice, babies in boxes, and compassion.

Might as well start off by offending absolutely everyone.

Anne Rice posted a link to this article on her Facebook page today. It got a lot of comments, as you might imagine. What surprised me, as a long-time Anne Rice reader, was that the general tone of the comments was strongly anti-abortion, and beyond that, frankly rather judgemental. Nobody seemed to want to know why this happened or what would’ve allowed this woman to make a better choice. They just wanted to condemn.  There wasn’t even interest in the lawsuit, per se. It was all about what a horrible person this woman was.

And they were, a lot of them, confused about why Anne Rice was posting “controversial” discussion topics. Anne Rice has always been controversial. She’s gone from being the atheist author of some rather purple prose, to a redeemed Catholic, and back again, and she’s still trying to find herself.  Which is the main reason I still like her! She’s still fluid. Good for her!

So Anne Rice fans = not who I expected. Not at all.  But who is? Anyway, the more I read, the angrier I got. And finally I had to post a response, because growing up in Idaho, it made horrible, awful, sick, absolutely logical sense to me, what this woman had done. And I cannot believe nobody else gets it. I’m not saying it was the best choice, or even a good choice, but oh yes, I see how she got there. So how about it, can we have some compassion, people?

Verbatim from the discussion thread on Anne Rice’s page:

“I’m from Idaho and I have some things to say. First of all, why does everyone assume that this woman had drunken unprotected sex and then blithely decided to terminate her pregnancy because it was inconvenient? The facts suggest otherwise. She’d have done it earlier, for one thing. 5-6 months? That suggests a powerful internal struggle to make this decision. Why did she have it in a box? This is a no-brainer if you put yourself in her shoes. She grieved. She wanted to bury it, even if only in her backyard or the woods somewhere. Does it not seem self-evident, just from the fact that she kept the fetus, that this was NOT an easy decision? Anyone with a shred of compassion would see that. The fact that the charges were dismissed, in such a conservative area, also suggests that there were circumstances we are unaware of, meriting our compassion. Unfortunately I have seen little compassion or christian forgiveness on this thread..only assumptions and judgementalism.

All BC has a failure rate. My mother had seven children. She got pregnant again and again and AGAIN, through multiple forms of birth control. As a devout Mormon, her only choice was to carry those pregnancies to term, regardless of her health, and raise the children, no matter the hardship to the exisiting children. If she’d even tried to adopt them out, she would have been met with a world of judgement and opposition. She’d have been told that she needed to have more faith that the Lord would provide. Now, the LDS church is HUGELY dominant in this woman’s area, including in the medical profession…so that’s the climate in which she made this decision.

I grew up in that climate too. Personally, I am uninsurable due to several chronic health conditions, which also mean I probably shouldn’t have kids. Among my problems, I suffer from migraines, which means I can’t take hormonal BC because it creates a stroke risk. So my choices are: abstinence, condoms, complete sterilization, or an IUD. I tried to get an IUD at the government clinic in Idaho, and I was dismissed out-of-hand. I was told there was no funding, that I was not “high risk” enough to merit receiving the procedure because they had so few devices, and that an IUD was not an option for someone who had not had children. (That last is incorrect information, by the way.)

I shouldn’t have been surprised, because Idaho legislators are pretty stone-age. Some of them are on record as stating that daycares should not be licensed or subsidised, because it is MORALLY WRONG for women to work outside the home. So why would anyone hope that they would fund rational reproductive health or birth control options for those in need? Keep dreaming! The odds that this woman even has access to low-cost condoms at a local community clinic are negligible in that area of the state.

Fortunately for me, because of a job opportunity I was able to move to Montana, which has a slightly more enlightened attitude. Through a combination of federal, state, and local funding, we have an excellent clinic in my town, staffed with informed and compassionate physicians. I was able to purchase an IUD through a canadian pharmacy and have it inserted for a total cost to me of less than $150. (In Idaho, out-of-pocket cost would have been almost $1000, IF I could have found someone to do the procedure.) So now I’m safe and I won’t have to make the decision she did. And I am incredibly grateful to my fellow taxpayers for helping subsidise my safety. I imagine they are just as grateful not to be paying welfare costs for a child of mine for 18 years! It seems like a no-brainer, doesn’t it? Let me re-iterate. NOT IN IDAHO.

Interestingly enough, the drug used to facilitate IUD insertion in someone who hasn’t given birth is the SAME used to induce abortion. So I can speak to its effects. It is excruciatingly painful. And it’s dangerous to use it after 8 weeks of pregnancy. So this woman went through agonizing pain, and it’s actually suprising that she did not hemorrage and die. All abortions are physically painful, and this was probably one of the more painful methods. So if you think she did this lightly, think again….

It truly, truly bothers me to see this astounding amount of righteous indignation and ire being expended on a stranger, in difficult circumstances which are not fully known to any of us, based on the few facts reported in an online news clip. None of us have lived this woman’s life, and none of us have the right to judge her decision. It bothers me even more to see so much judgement coming from devout Christians. Anyone who calls themself a Christian should be the FIRST to say, let God judge what she has done. Let US discover why she did it, rather than assuming we already know, and then let us discover what we can do to alleviate her misery here on earth, so that she can go her way and “sin” no more. Isn’t that what Christ would have done? I rather think so. We’re so busy these days trying to impose our views of what is “right” on each other, and judging those who fail to live up to our standards, that we’ve forgotten to take a deep breath, look around us and see what we can do to HELP each other live healthy lives and make good choices.”

Oh, and in case you’re curious…over 600 comments, mine had 10 ‘likes’.