Ducks! Get in a Row!!

Tonight I will be honorary Duckmaster at The Peabody Hotel on International Drive. That is where the Young Survival Coalition Conference for young women is taking place. Lots of planets have lined up with other fabulous people helping me and strings being pulled and then all of a sudden, they said I was named tonight's Duckmaster. Hilarious. I can't remember what happens since I haven't seen the ducks since I was a real little kid. It's a big tourist attraction and the ducks come down from the roof, I think, onto the elevator, then into the fountain in the lobby. Well, I'll tell you after tonight-ha ha.

The CT scan came back normal for my bladder and kidneys, but the urologist still wants to do the procedure where a camera is placed up my pee hole and look around, just to be safe. I'm going through so much right now that I don't want to do it. Everything has been completely resolved. I have no more blood in my urine or pain when I pee, anything. Dr. Shah says it's up to me but hold the date just in case (Mar. 28). I really do not want to do another procedure. This might be the 1st major thing they've recommended that I refuse to do or at least opt to do later if the symptoms come back.

Here's the thing...

There's a new brain tum0r that has popped up. It is only 3mm and we are going to do my 4th stereotactic radiation procedure. They no longer bolt the halo onto your head so that is good news. Bad news is I have to wear a mesh mask completely around my head and am claustrophobic. I go Monday to get fitted for the mask and meet with the social worker so I don't freak out--all while on anti-anxiety pills. Quite the adventure. I'm more worried about wearing the mask then the actual procedure at this point. What a silly, stupid girl I am. Simulation/fitting on Monday, brain radiation is Monday, March 7. Please pray for peace and no mistakes.

Meanwhile, back at the ranch, holey is not healing fast enough. I met a surgeon that says it looks good but it's moving very slow. Yeah, duh. Dr. Longevine is my new surgeon and he's new to MDA and is very nice. He offered two solutions. The first is a very invasive reconstruction surgery where they take a muscle from another part of my body and put that healthy tissue in the hole and reconstruct the chest. This is not a good option for me because I would be off of chemo for at least 3 months from wash out time to recovery. Nix that.

The second option is to send me over to Florida Hospital South's wound care center. They have a hyperbaric oxygen chamber and MDA does not. This would speed up healing immensely by over oxygenating the tissues. It will be 30-40 days for 2 hours a day. That part is very daunting. Then I mistakenly looked at pics of chambers on the internet and am again freaked out for claustrophobia. Even if I'm in a big room with others, I will have to wear a mask all around my head for the 2 hours. What is it with these masks, dammit? I've been crying uncontrollably until my head kicks in and tells my heart to shut up until you at least see the damn thing.

We will go tour the facility and meet the doctors and look at the chambers next Thursday, March 3rd so hopefully I'll feel better after that. I mean, Michael Jackson, and lots of people pay lots of money for this shit. I've had some good advice on email and facebook from others about how good I will feel so I'm trying to focus on that. I'll tell you all about it later, I'm sure.

Yesterday, I had another blood transfusion. Even though I was off of chemo for a month, my hemoglobin dropped to 8.6. Ain't that a bitch?

So, I still can't get a break. But everything new that pops up it seems that God has equipped me for the fight. I can only imagine that going through all these different procedures makes me a better witness for others and helpful to those that might be scared after I conquer my own fears. Yeah, let's go with that.

Love to you all!

Laura

Now, what about my hat?

Hello Friends of Cancercopia,

I am on Vicodin as I write this, forgive me if I go astray... I mean, as Christy writes this for me, since I am currently in the rabbit hole. The pain from the disk in my neck is back with a vengeance. It's the top of my shoulders, and it hurts so bad to just sit up or when I try to reach for something or to pick anything up, that I have gone to the "Big Dogs" for pain management.

Oxycodone was a disaster yesterday and will not be used again. Forget rabbit hole, I was somehwere in the belly of the beast and could not get out for hours on end. Today was Vicodin... which was better, but still loopy. Tomorrow will be Oxycontin. I am just experimenting to try to figure out which one makes me function the most during the day.

I had a CT Scan for the urine in my blood, and will get the results later this week. I couldn't lift my arms in the machine, so they worked around it. I love all the techs and staff that I have met and developed relationships with through this pathetic bullshit. I am blessed that they are so knowledgeable and compassionate at the same time. (as I type this, Laura is saying "it's not funny, it's not funny... stupid vicodin") :)

I got the creeping crud that has been going around which everybody gets, only mine includes vomiting first and then develops into a flu like creature. I had to go to an extra doctor appt so I could get antibiotics, cause you KNOW how much I love going to the doctor more than I need to.

I went to a Bridal shower today, and I looked really cute. For a cancer patient. That's what I aspire to now. To be cute... for a cancer patient. I even matched my hat to my shirt... my hand knitted donated hat. Sometimes the people who know me look at me with worry in their eyes- don't they know how much time I spent coordinating my hat and my shirt? I wanted them to tell me how cute it was. But they just took me to the nearest chair and plopped me down and threw a blanket over me and asked me what I needed all day. It was a really nice shower.

Now, what about my hat?

I got these cute knitted caps from a friend of mine who contacted a charity. Apparently there are charities where people just knit caps for chemotherapy patients. There's this one that they sent me that is a sleeping cap that I wish I could crawl my whole body in, it's so soft and delicious. The other two have cute flowers on them, which normally isn't my style, but they are damn cute. So maybe cancer is giving me a new style. As you can see from the pages in this blog, cancer is the gift that keeps giving to me.

My new style consists of (not that I ever had any damn style before) the jeans that aren't too big from losing all the weight. I mostly pick the ones that are one or two sizes bigger. I don't know what to do with the ones that are much bigger than that. I mean, it's not like dieting where you put the fat clothes at the back of the closet, or is it? If I get rid of the bigger sizes, am I being pessimistic that I won't be normal again? That my body won't be a normal weight again? It also consists of shirts that don't look too big and try to conceal holey. I try to hide holey from the world. The world is not ready for holey.

Sometimes I accessorize. But, now that's just too much trouble. If I can match the hat I feel pretty good about myself. All this usually takes about 7 hours to do, before I finish off with a nice pair of sneakers that don't hurt my feet. I don't think I will be setting any trends for anybody soon.

Love you all!!

Proceed with Caution

Many times I have told others that my blog is rated PG-13. Now is one of those times. I'm going to talk about things going on with my body that might be gross. Consider yourself warned.

So I've been getting nosebleeds since I've been on Avastin which has been several months now, maybe even a year or so. This really sucks. I actually have a nosebleed right now all crammed with tissue while I type this. Avastin was in the news as the company that makes it has not proven overall survival rate in metastatic breast cancer survivors so the FDA will be removing its approval. If this happens, hospitals won't administer the drug and insurance companies won't pay for it. This is disturbing because my doctors and I believe it is part of the treatment keeping tumors out of my brain. They have been going ahead and giving it to me for now, until someone tells them differently.

Nosebleeds all day long really suck. So then I wonder why in the hell am I on this shit if it's not helping and I want to get off.

Avastin also delays wound healing so we actually just skipped a dose while the holey heals. The holey will probably take several months to heal so I think we should take a break from Avastin for awhile. The doctor's office wants me to call every time I'm about to have chemo to discuss. What a drag. I'll do it though.

Avastin also causes blood in the urine. I had a large amount of blood in my urine sample a few weeks ago and the doctors have run two urine cultures since and both came back negative so the doctor's office told me not to worry, it's just a side effect of Avastin. But this weekend, it got worse. Every time I peed the toilet was dark, deep red. I am totally freaked out. I don't have any pain though, so it's confusing. I'm feeling more run down then usual, so it could be some sort of infection, who knows. They took another sample today, are growing another culture and referred me to a urologist. Lucky urologist only works on Fridays so I have to wait until Friday all freaked out. Or beyond that for whatever tests they want to do and wait all freaked out for that.

And now there is random shit popping up. My chest hurts so much from the holey that I can feel the pain shooting up my nerves into my neck. And my neck and shoulders are hurting again but I'm not going back to that horrible physical therapist. And my lower back hurts. And today I was doubled over in pain from constipation, but don't worry, that only lasts for about a day then all the poop pushes itself out in very painful and bloody bowel movements. Fun, huh? This is my pattern, get diarrhea, take pills and be constipated for a few days until my insides feel like they are literally bursting out through pile of razor blades in my ass.

Also, now my front tooth is discolored. All of sudden. Brown tooth! From the meds. Doctors don't care, it's just part of the "cancer journey." Well, fuck it all, I am so sick of this bullshit.

I'm just telling it like it really is so you'll know the real answer to "how are you feeling?" It's just too gross to tell you the truth in person. This is truly how I'm doing. Navigating these bullshit side effects and pain every day. But I will not let cancer win or get the best of me. I'm fighting this at every turn with energy medicine healing sessions and good times with family and friends in between the crap. There is no way it can win! Thank you for the support that helps me believe that every day!

Holey piece of shit, Batman!

Holey has taken over the spotlight in my cancer fight for now. About a week ago, the nurses of wound care suctioned it out with a vaccuum. Yummy yum yum. Holey has been very angry since. They say it is healing well and that I am doing well, but my chest feels like someone is stabbing me. Yes, I have pain meds. No, I don't like to take them. I am already on so many meds and Advil does seem to take the edge off a bit, so it's fine. For now.

The nurses say I will do the suction thing several more times. They are trying to move the inside of the hole from a yellow, pussey place to a bloody, beefy place (direct quote from the nurse). It needs to be more vascular and guess what that means kids. Vascular = painful! But hey, that's all part of the healing process. We bloody the shit up and then it can scab over and heal. It cannot happen fast enough for me. That fucking lumpy has taunted me for several months now and now he taunts me from the great beyond. Piece of shit lump. Bullshit.

That's right, the bullshit train is still running on the tracks with no scheduled stops. I frequently think about how I can get off this ride and still be alive and well. Can I ask the doctor to take a few months off of chemo to try to get my body back? I need strength and I actually miss the girth I had which made this fight easier. Maybe I should go on tour talking to girls about their weight. Don't worry, ladies, you may get a form of advanced cancer and then you'll wish you had that fat ass, believe me. Well, I'm not sure many people would show up for that tour, even if I'd be sure to serve all the doughnuts and pie you could eat. Mmmmm....

I had a PT scan but it was considered a baseline PT scan since the last one I had was in 2007. I've gotten CT scans this whole time and why the doctor now wants to switch to PT scans, I just don't know. So, we can't really check in on how the cancer is going away until the next scan in 3 months or so. Hey, don't ask me. I just show up where they tell me at this point.

I'm trying to stay warm with the Florida cold snaps. Brrrr... you people with your snow think you have problems. Try 65 degrees! It sucks! Hahahahahahahaha!!! I am so glad I live in Florida. I imagine trying to go to treatment with all that snow and crap--no thank you!

I'm resting a lot now that I've taken the break from work. I have no idea how I was working and doing treatment. Resting really has become my full-time job. Transitioning back to work will be interesting after the break, but I'm not thinking about that. Now I'm just worried about how much I'm eating and when to take my next nap. Ahhhhhhhhh......

Love to you all!

Holey Holey Holey!!!

I've been feeling much better and although I don't eat much at meals, I have been eating better and keeping food down. I saw the doctor two days ago and she said I looked stronger than she has seen me in a long time. So things are moving right along.

I am grateful for all that radiation to be finished and now I am back to a somewhat "normal" chemo routine of chemo every other Wednesday. I really enjoy the weeks off from going to the hospital, let me tell you.

Being off of work is very strange. I miss the people in the office terribly but my body feels completely stress free with not thinking of what needs to be done in the office. I can take several naps a day if I want and I have been doing so happily. It feels like that part in Forrest Gump when Jenny comes home and sleeps and sleeps for days. I didn't realize how much sleep and rest I wasn't getting before now. Yoda dog is over the moon because I'm home all the time and naps around with me. He looks so betrayed if I leave to go anywhere, like his face is saying, "hey, I thought we were in this together. Where do you think you're going?" I know I made the right decision to take a break from work. Sometimes I'm bored, but I have plenty to do around the house. Heck, I haven't even taken down the Christmas tree yet. :-) It's like I'm waiting to make sure I will have something to do or some weird thing like that.

Two more ladies passed away from our stage IV support group and one more is having all kinds of scary problems with her liver right now. There are 3 of us left from the original group-her, me and Marcia. We're freaked out but we call each other and support each other as much as we can. It is totally bizarre in a way I really can't explain. You don't want to waste your somewhat "healthy" days on worrying if the things that are happening to them are going to happen to you. Every day is God's gift and it's important not to squander them or feel guilty because those horrible things aren't happening to you. There is a reason for everything and I feel so blessed to be doing better and to have known these women. I'm so grateful that they came into my life at all. Cancer did that.

So, I wish that were all I had to report. Today I checked in at the wound care clinic. They have been monitoring lumpy on my chest for a few months now. I have watched lumpy miraculously dissolve and go completely flat. But there has been a nickel size pus scab in the center of where lumpy was located for weeks which we've been keeping covered and putting medicine on. Well, today, the nurses took the pus scab off the top. Then they squeezed the circle and oozed all the pus out of the circle. They were very excited and encouraged that all the pus and crapola came out of the circle. Guess what remains in the circle? Nothing!!! It is a big gaping hole in my chest!

No, I'm not exaggerating people, which I know I tend to do. There is a hole in my chest that you could stick your thumb down into. It reminds me of the anti-smoking commercial that aired years ago of the old woman smoking a cigarette out of the perfect hole in her chest. I was completely freaked out when they showed me and started to cry. These nurses have gotten to know me very well over our time together and they just hugged me and said it wasn't so bad and that it was a really good sign. Then they gave me stuff to pack the wound so the inside could heal without the hole closing up. I was alone today and I'm supposed to show Richard how to do it without vomiting. So we'll see how that goes. I just have to remind myself it's a superficial wound and no organs are going to pop out and ooze out of the hole. Yum.

So that's my bizarro update for now. Love to you who still read these posts.

Muchos Smoochos!