Monthly Archives: November 2012

Ported

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The port surgery went smoothly.

This is such a small town. The surgeon who performed the surgery has, as his junior partner in the practice, the husband of the doctor at CHP who initially decided I needed to see a specialist about my lymph nodes — the doctor who found the cancer, basically. So I found out some cute things about her. This surgeon was funny. We talked about how horrible kidney stones are. His are worse than mine, totally. I have yet to meet a doctor here that I dislike…but surgeons are a riot.

They didn’t put me under all the way this time, just sedated me heavily and used a local anesthetic. I slept through most of it, because I don’t remember them injecting the local, but I woke up for a bit of pulling and tugging towards the end. I was apparently fairly drugged when I got back to the room and told Pol about six variations of the same story, but other than that, I was up and eating and ready to go as soon as they’d done an x-ray and confirmed that all was kosher for me to do so. My pectoral muscles feel as if I’d worked out a little too hard, but there is no serious pain at all, so far.

Actually, I felt so good right after we left that we went straight from the hospital to Columbo’s for some gluten-free pizza. Yum! Then we went to the library and checked out many books. Then we went over to CHP and had my neck stitches removed. Hooray! Then we went back to the hospital for a meeting with the social worker about fertility options.

Apparently I am at pretty low risk of infertility due to the chemo, but there is also an injection I can get, which will shut down my ovaries for a few months, and this will help protect them further. I am mulling this over and have a consultation about it Thursday. I think I’d like to know a little more before I decide. Is it going to plunge me into mini-menopause on top of chemo? Do I really want to go there? On the other hand, it would be nice not to have to worry…so we’ll see.

All in all, a very busy and productive day. There was also a nap at Pol’s house, followed by dinner, followed by dozing and reading on the couch, and now I am off to bed.

“You will lose your hair.”

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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.

Read the rest of this entry

The Lymphoma Thing (repost from Facebook)

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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.