Monday, January 14, 2008

FAQs II

warning: this blog contains horrible grammar. I tried to write it up pretty and correctly without the use of multiple commas and italics, but it wasn't working. In addition-I don't remember any rules of grammar, so there.

Where the heck have you been?
In the depths of despair, I guess. Not all the time, but often. This post is going to be a bit boring/informative/depressing and your welcome to kindly skip it. I even hesitate writing about it, except I told myself I cant blog about anything fun (like my last minute birthday trip to Chicago) till I fill you in on whats been making my life a little miserable.

Whats making you miserable, the shots? Its not the shots. They are sooo much better than my daily infusions. I will say I feel sicker more often than I used to, but maybe its just cause Im awake so I notice it. Some nights after the shots I'm up with the chills feeling very awful, but I only take them three times a week, and it certainly doesn't happen every time.

Are you still tired? I feel much less tired. If I sleep in I don't need a nap. Its just not that bad.

So your good, right? I feel like if I wasn't dealing lymphedema my life would be pretty perfect. Thats how I always am with trials though. I always think, 'anything but this. I could handle anything, but not this.' I guess Ive made it through all those times. And I suppose this will pass too.

Lymphe-what? They have a word in cancer lingo called 'aftereffects.' Basically when your treatments are over its the issues that the surgeries or chemo have left you with. I was sure I wasn't going to have any. Last month though, my leg started swelling. I was a little freaked out, but got an appointment with the occupational therapist. But she told me I had lympedema and that I always would.

What is lymphedema? So you have vessels and nodes thats part of the circulatory system called the lymphatic system. It collects and filters fluids throughout your body. It also helps in the immune response. If the system doesn't work properly the fluid cant make it back to the heart and it stays in the effected limb.

Why did this happen to you? I was only suppose to have a 10% chance of this happening after my second surgery. Breast cancer patients who have their lymph nodes removed have a 20-30% chance of getting it in their arms. The dr.s thought it would not happen to me because I'm young.

Heres what I think: It was that nasty infection I got post op. I'm going to have someone (I don't know who, Ive got to get some Dr. friends) do a study on it, but I think they should give you low dose antibiotics post op to someone like me who has had a) the nodes out, b) has a drain in their leg for a month just begging for an infection to climb up the leg, and c) has no way of fighting it off cause the lymph nodes are no longer there.

What are the complications? The fluid that is stuck in your leg is a good breeding ground for infections. I guess if your leg gets an infection its hard to clear up. You also lose some of your range of motion. Once the fluid has been there for a while your body grows connective tissue and fat, so your limb literally changes in size.

They call this a chronic progressive condition. If left untreated it can progress to later stages which they call elephantiasis. Did you read elephant? Perfect.

Worst case scenario? In rare cases of repeated infection, amputation. If you know me, you know Ive considered it.

Is there a cure?
No. They treat it, and try to stop the progression, but they cant figure out how to make it go away. For now the treatment is these ugly annoying compression stockings (which they only make in black and 'nude' that don't resemble anyones skin tone) that I have to wear all day. And then Josh massages it every night to try to get it out of my leg (and p.s., although he is sad that I am sad about it-he maintains he doesn't care that my legs don't match. Do we believe him?).

Is there hope? Theres always hope. I have some major faith in my genius brother Mike, who is conveniently getting his Phd at the U in microfluidics. I don't really know what that means, but I know if anyone can save people in the world like me, its my brothers. At least he said he would look into it-hope you were serious!

Whats so bad about a swollen ankle? Basically its just ugly, and a pain. I have to try to hide my ankles cause they look a little...off. I cant wear most of my shoes cause its too tight a fit. I'm not suppose to wear high heels at all (I've broken the rules of course because my winter boots hide it). That alone is enough to make a girl depressed isn't it?

To be honest, I think its been harder than the cancer thing. Not that I would rather have cancer, but it was easy to think I'm either living or dying, whats so hard about that? I didn't think option three was turn into an elephant!

The dying option was sounding good last week (which is so against everything Ive learned about life this year). I think the medicine is starting to play tricks with my mind and/or emotions(a common side effect is depression). I'm not used to being so sad and angry. No, I'm not used to being sad or angry.

Anyway, Josh went out of town for a night. We had strep. Luke was up coughing till 3 am (well actually I was up trying to cough for him because I have issues when I think my kids cant breathe) . I had given myself a shot that night and felt like I had the flu. I was so sad about my leg, I was pacing and crying.

I was seriously worried the cancer wasn't going to kill me. Whats going on? I'm 6 months into my diagnosis, I should be strong and brave and grateful to be alive. Shouldn't I? But then again, I can grieve over loss of said gorgeous limb cant I? Shouldn't I?

That was probably the worst night of my life.

But morning came and took it all away. Sometimes you just need to see the sun, don't you? Is that the same sun that gives you cancer and gets you here in the first place? The irony.

Are you really that shallow? Yes. But I'm trying not to be.

So, hows your leg doing? I'm only clicking 'publish post' because I've come to some sort of terms with having a 'condition'. I really am ok. I'm not ready for you to bring it up, though. If you want to see me cry, just ask me how my leg is doing. But if anyone has good news about lymphedema, please share it!! Tell us its not as bad as I'm describing and that I need to stop crying about it. Well, I know I need to stop crying about it. I just cant.

Is this blog going to get chronically progressively worse too? Most likely. But my next post is to chronicle exciting times in the Midwest!! And yes, I can still have fun!

25 comments:

Fugal Family said...

Dear sweet Alisa,

You know my feelings about your leg; I wish I could take the lymphedema away for you. I too mourn your 'loss'. Words cannot change your situation, but they can bring you comfort. I really wish you could see yourself the way I and others see you! Though you do have great legs, there is so much more to you than your leg or your cancer. You are a beautiful, talented, loving young lady, wife, mother, friend, daughter, sister, etc. I have said this many times before - You are SO much more than cancer or a lymphedema leg!

To quote Glinda:
"I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow"
(I am still a little obsessed!)

Despite what you consider to be your "elephant" leg, you have so much to teach about and lots of opportunity to help others grow from your experience with cancer. Write a book! Continue your blog! I admire your honesty - tell it to us just the way you are feeling it.

Facing cancer doesn't mean you always have to be brave and strong. Cancer means you are never, ever alone. Cancer means family and friends surround you and bear the burden with you. You can't do it alone (luckily) and that is where others can help. Even when we can't truly understand the way you are feeling, we can listen and sympathize.

You are always in my thoughts and prayers!

Steph

Stephanie

wendipooh13 said...

Alisa when I saw you at the game on Tuesday I had no idea, I didn't even notice anything, in fact I thought you looked really amazing and was glad to see you... take care and yes you are strong and a great inspiriation...

Jill said...

Everyone will be so glad you're back to posting. It was so good to talk to you yesterday. I wish I could make it all go away. We love you.

Sonja said...

I say go ahead and grieve--I can't imagine facing a life-long condition. I'll start praying for Mike and his microfluid advances.

Roger and Kelli Proctor said...

Alisa, I am sure you have gone through every emotion in the book....and thats ok! Feel what you are feeling, I love that you are so open with your emotions because its important for you to not keep it all inside, it is also a blessing for us all to learn from you. You are an amazing woman and so real and I have always just loved you for being such a real person. You are amazing and are teaching all of us so much. You are inspiring, keep staying in tune with your feelings! We love you and miss you guys! Did you get our treat at Christmas? You are awesome and of corse you guys are constantly in our prayers!

jennie said...

As usual, I loved being with you today. Thanks for the movie, the lunch, and the laughs.

I've been thinking about what it would be like to have my "best feature" changed for life. Pregnancy skews my perseption of any good features on myself, really, but I think I have pretty nice teeth, (and so far, pregnancy hasn't changed my teeth!) But if someone were to tell me that I'd have icky teeth for the rest of my life, I think I would never want to smile again!

So here's what I say: I agree that it's fine for you to be sad about it. Your legs have always been a subject of envy (and lust, I'm sure!) I can see that it would be a very hard thing to come to terms with. So, you take your time, girly.

Lastly, to those who feel like it's right to tell you what you "should have done" or "should have thought", I say, give them all the bird. (I hope your GA dad isn't reading this.) I'd love to bring over some black eye makeup and some heavy metal and we can just jump on your furniture and say all kinds of bad words. (after your kids are asleep, naturally.)

We could break some things too, if you want. Maybe I can find an old electric guitar to throw through your tv. THAT WOULD BE AWESOME!!!

Call me, and we'll plan a date and time!

All about the Benjamin's said...

Alisa-

I am glad that you have posted on your blog. I am sorry for the frustration you are feeling, Though I believe you are entitled to feel the way you do. No one can understand your situation but we sure can empathize with you. I pray you have strenght. You have a great huband and from what I am hearing great kids.
Always in my thoughts!

Brittany said...

I'm sitting here crying for your lympheleg too (can we call it that?)

Jewel said...

Alisa,
I am really sorry about those lime greeen sandals with the wicker type bottoms. When I used to see you in those, I wished I dared to wear something so chic.
So now you will have to shop for handbags, or new lip gloss colors, or something to compliment all of your other "drop dead" (oops- SORRY!!! J.K.) features.

Jewel said...

Seriously, It has to be so hard to keep a PMA (positive mental attitude) through all of this. Sick kids and lack of sleep always make everything harder. My mind keeps going back to the hymn:
"When through the deep waters I call thee to go,
The rivers of sorrow shall not thee o'erflow.
for I will be with thee, thy troubles to bless,
And sanctify thee to thy deepest distress."

Tiffany said...

Alisa,
It is so good to hear from you. I'm not sure why, but I didn't get your blog until Jan 26th. Maybe thats when you posted?
I have an article I would like to e-mail you so I don't take up all of your blog space. The one I had didn't work. Could you please email me, so I can reply.
Thanks, love Tiffany
migntiff@comcast.net

momila said...

Alisa,
You know we're always thinking and praying for you. We probably have the best "inside knowledge" of how you're feeling...and yeah, it's the pits. But, believe it or not, you get used to it!
I remember seeing my C-section tummy scar for the first time..holy cow..and then I went on and had 4 more kids the same way. Good thing "we" aren't defined by our bodies....they are temporal and not "us", really.
I'm so sorry you are having hard time. My heart aches for you. One thing Brent always tells me "the rain falls on the just and the unjust"...and he's right. We all have good & bad stuff to deal with. Keep your chin up. You are so loved, try to focus on that. And this too, will pass.
We love you.

happy mommy said...

I just want you to know how much I appreciate how honest and forthright you are about everything that you are going through.
It's right for you to feel all these feelings, and I love that you are comfortable enough with yourself to show it--the good, bad, and ugly.

Makes me think that if I were ever in a bad situation, that I could be myself and speak the truth and people could still love me and look up to me--because I certainly do that with you.

big hugs,

talitha

suzanne campbell said...

Ok alisa after the breast cancer for me I felt all the feelings you have I was very scared about Lymphedema and so when cottonwood hospital called to find out how I was doing I sobbed about it because you are so emotional and you know you should be grateful but you are so scared about all the things that could happen and that is still an issue with me I have survivor guilt and anxiety that it is ready to come back I am now six years from the surgery's and I am taking an anti depressant called Cymbalta it is amazing no side affects and I am just able to cope and not go under with all of it. anyway back to the big horrible L word. The lady from Cottonwood gave me the name of Jenny Guertain who is a Lymphedema specialist she knows everything about it. She taught me special massage techniques to help the lymph to flow in the right directions it takes a few minutes a day and she is amazing she works with all kinds of cancer and can get the swelling down in a couple of days and then tell you ways to keep it there. I never did swell up but there are no guaratees one lady had been 20 yrs from her breast cancer and was getting ready for her mission and painting and over did it and it swelled up the next day but she has it under control so it is in all of us it just has manifested in you faster and you are right that drain was in so long. well I hope this has helped call me if you need too. Vickie and your mom know how to get a hold of me. Also let me know if you are working at Photography yet Corby got called up to Afghanistan and so we need a profesional picture and I thought of you but if you are not ready don't even give it a second thought. Learning how to say no is a huge part of cancer but that is a story for another day we love you and are praying for you Suzanne

Brooke said...

Alisa,
I am so sorry about your leg. I pray that if it isn't your bro, someone else will someday find a way to help it. We're always praying for you. Can't wait to hear about Chicago!

Karlet said...

I believe Josh. Alisa, if you need me to come stay at your house, please let me know!

ronco said...

No shame in this, Alisa. It's hard to imagine having someone tell you to just deal with something that is changing something so frustratingly important to you. I think you're amazing. Josh, how many times can I say you're amazing, too? Maybe even the-mazing when we get right down to it.

The Brown Family said...

Alisa,
I am so drawn to your blog and your progress. I really hope you don't mind. I just have to tell you that I have read through laughing with you and crying with you and you are in my prayers. Your such an inspiration to others! I love your outlooks on things! Stay strong!!!

Whatsatoomzaletson said...

I love you and your grammar and your legs (yes, both of them!)

Kathy Urry said...

I am told you came to Young Women to day I hope this means you doing better. I can tell this is taking a toll on you and your family. Please let us help.
I wish there was a way to make you healthy with out the drugs.

Take care and know we Love you
The Urry's

alisa said...

Thanks for all your sweet comments. For the record, the reason Jennie says she would go gothic with me is because thats what I feel like doing sometimes (of course I dont). Those are the angry days.

Suzanne, thanks! I go to to Dr. and trust me, the antidepressants will be prescribed! Also, we will look into your lady.

Julia, if you wear a size 10 the green shoes are yours.

dawn said...

Alisa- I heard about a treatment (and lets keep in mind I'm no doctor) but it basically sounded like a massage around lymphnodes that helps to move the fluid the way it is supposed to. But if that isn't a real treatment or not an option for you, I say get massages anyway! They are quite enjoyable and I think you totally deserve at least 100!

Brittani said...

Alisa! My thoughts and prayers are with you. I love you. I put something on my blog to make you laugh. You'll have to check it out. I thought you could use a good laugh. I love you!

emilie said...

alisa - you've always been one of the most beautiful people i've known. you remain. you are incredibly strong. i love you.

Misty said...

Alisa,
Hey, I'm hoping you remember me it has been a long time, I got your blog info from Kerryne Christensen/Brown. I just wanted you to know that you are in my prayers!!! I was remembering when your family moved into the old ward and when I first met you (the good old days when we didn't worry about anything). I have missed you and all of my old friends. Life doesn't always turn out like we plan, but I know that our Heavenly Father and our Savior is with you and loves you and your family! I love you lots and if you need anything please let me know I would love to help!
Misty Burgon/Wright