i’m tired.

June 29, 2009 | Category: Uncategorized | 1 Comment

Let the good times roll. It’s appointment city in my life. I have the dental dude tomorrow. Hopefully all is healing correctly and I have two separate doctor’s appointments next week. I didn’t realize these were all falling on top of each other, but I guess it’s good. Just a quick $60 down the tubes.

My medicine hasn’t really changed at all and my hair stopped falling out as much as it used to. I don’t know what is happening, but I think the hair falling out and then my mouth destroying itself must have had something to do with each other. Maybe when my hair starts falling out in large clumps I can assume I’m about to get really sick again. Not sure, but now I have to wait for it to all grow back. Annoying, but at least I’m not bald.

Other than that I’ll have a better update once all those appointments are over with.

It feels weird, I feel like I should be complaining about something. There’s lots to complain about, but I don’t really feel like it. I’m getting my scooter back today, finally, so let the good weather begin (seriously)! I keep looking at prices to go to London and/or to the west to see my brother and Shanahan. I have no money or time though. I’ll have to figure something out. I’d like to go away for my birthday. We shall see.

Really except for the weird marks on my face that just will not go away, thanks mouth/face infection; I’m feeling pretty good. I need sleep and to detox for a bit, then I’ll be 100%.

1 Comment | Permalink

You did it, I know you did it.

June 24, 2009 | Category: Uncategorized | Leave a Comment

I have too many platelets. What? I have so many that Dr. Cancer was actually reluctant to tell me what it was. It was just a week ago that I was being threatened with another IVIG treatment to up my platelets, but then she said it….700,000. What?! Why?! The answer? No one has a fucking clue. Shocking! Basically, I can only work in extremes, I’m either so low I’m going to bleed to death internally or so high that I will have a blood clot and die. Ok, not really, but seriously, what is with this? I’m like XXXtreme blood.

So with that blood count and next to no swollen lymph nodes, Dr. Cancer said and I quote “You have graduated from the cancer clinic and I hope that I won’t have to see you again”. Good god it was like music to my ears! So I guess that’s that? Should we just shut down dinkstrong.com? She told me that my ITP was in remission and thanks to not having a spleen anymore; it probably will never come back. Seeing as I’m the luckiest person on the planet, it will come back and I’ll get an even weirder more rare disease to put on top of the other two rare diseases I’ve already got. HAT TRICK! I’m kidding.

Good news over all. I wish I could say the same for the drugs I’ve been on and how they make me feel (gross). But I’m not ready to deal with the unfortunate circumstance of having to take medicine every day, I am going to dwell on the fact that I got a cancer-free bill of health and that’s better than anything I could have ever asked for.

Dr. Lupus and I have a little hang session, that’s what I call my doctor’s appointments now; hang time, on July 10. We will discuss my current medicine situation and if there are any alternatives besides the ones in the chemo family that will make me infertile. That should be an interesting conversation.

I am feeling good though and whether it’s psychological or what, I couldn’t be happier. Wait, does someone want to do something about this doomed economy or perhaps the worst weather ever? That’d be kinda nice.

Contrary to popular belief, I am not dead.

June 15, 2009 | Category: Uncategorized | 4 Comments

Hi.

I’ve been meaning to write for a couple days now, but I haven’t had it in me, so here we are. I am feeling a lot better overall, but I’ve also been doing a better job taking care of myself. I’ve been cooking a lot more, granted nothing extravagant, but cooking none-the-less. I also pretty much quit smoking, slowed down my drinking and have been trying to eat breakfast every morning. I also, finally, got cable at my house! All these things combine make for a better me.

I treated myself to a very large and destructive Saturday though. My friend S.K.’s family has a few annual parties that really go down in history as the best parties of the year. Saturday was no exception. I drank the “punch” which literally punched you in the face while you drank it. I got there around 5 and left around 2:30am. It was epic to say the least and an absolute blast. Popping 2 bottles of champagne for 3 people at 2am was less than a good idea, but nothing really is a good idea at 2am. This, in turn, lead to the laziest Sunday I’ve had in ages. I left my house to get a burrito, which I brought back and ate in bed. I had a lot of hives and was feeling pretty hungover so I opted to stay in bed all day. I only finally got up this morning and that was only because I had to work. So, it’s good to know, the laziness wins over officially sometimes.

Other than the hives I got, which may have to do with dehydration? I think things are ok. I had blood work taken on Thursday and didn’t hear anything, so I assume that is all good. I also went to the dentist, who told me I had better teeth than him and that the gums would grow back on their own. Thank goodness. It’s going to take about a month, but I already can tell how much better they are. I’m not quite at the point where I can bite into things, say like an apple, but I’m definitely getting there. I have two doctor’s appointments this week, including seeing Dr. Lupus on Friday. I think we’re going to discuss a possible drug change. I don’t know exactly what that means, but I’m sure it’ll be annoying because it always is!

Thanks to everyone for their kind words all the time. You guys are the best.

4 Comments | Permalink

An unfortunate Update

June 5, 2009 | Category: Uncategorized | 2 Comments

Unfortunately I do have an update, a very “dinkstrong” update. Is that a sentence? I don’t think it is. Anyway, I spent all of Wednesday in the ER. The mouth infection got much worse and I couldn’t speak or eat anything, so my doctor told me to hit up my favorite place. I guess I just missed it. I arrived at the ER around 8am and the registering person was the biggest bitch. She kept asking me why I took a vicodin and while I desperately tried to tell her, through a swollen tongue and sore teeth, she just gave me an evil eye. I wanted to take the blood pressure arm band and wrap it around her throat. I sat around in excrutiating pain for the next 5 hours until they told me to go to the emergency dental clinic. There I spent another hour or so.

Has anyone been to the emergency dental clinic? It is a WEIRD place. So many odd things happened. First off, it’s a teaching hospital so you first see a student, who in my case, was younger than me. Second, he takes his mask off and he looks vaguely familar, but I don’t know why. Then it happens…where did you grow up? ME TOO! What year did you graduate? 1998, oh I graduated in 2001. Long story short, this kid grew up 2 streets away from me and I definitely knew him as a little kid playing kick the can and cops and robbers. Now he’s looking in my mouth at my “dead” gums and trying to calm me down as I’m crying and hoping I don’t lose my teeth. As I told Jenny (who obviously came and waited with me in the ER because she’s a champ of champs) I am going to be bald, toothless and full of disease. I can’t wait to try and find a husband! HA! I kid, I kid.

So anyway, turns out that I got some type of gingivitis from the steriods and lack of immune system. Disgusting. Luckily I have been put on antibiotics and a special mouth wash and it’s already a whole lot better. In fact, I think by tomorrow or saturday it may actually be gone completely. It was the worst pain ever. The problem now is, what do I do? Obviously the steriods are hurting me a lot more than just thinning my bones, losing my hair and making me fat; they are now destroying my gums. My teeth, luckily are in great shape because I have good hygiene (though, you probably wouldn’t think so after this post, I swear I am clean! ha). There is talk of getting me off the steriods completely and putting me on some other drug whose name escapes me right now. This drug is a classified “D” drug, which I don’t really know what that means, but apparently it’s very strong. She didn’t want to use it unless she had to. So we’ll see how this goes. The arthritis and hives are back because my platelets dropped to 80, but have since bounced back up to 118.

I feel like I’m all over the place in this entry, sorry. So after they took photos of my gross black gums for their work books in school, I was sent back to ER to wait for another doctor, who never showed up! I waited until 5pm, which in total is 9 hours with no food or drink and just sitting in the ER. I left. Luckily, I’m bff with Dr. Lupus so I shot her an email and told her what happened and I was able to see everyone I needed to see yesterday.

Well long story short, my mouth is almost back to normal. I can talk again and can almost eat normally. I’m in way less pain and I’m hoping that was just a freak occurrance. Seriously, I need a break. I’ve been told by a few people that I should play the lottery or go to vegas. Something has got to even out.

2 Comments | Permalink

Ever have that dream where your teeth fall out?

June 2, 2009 | Category: Uncategorized | 4 Comments

Mine may become a reality! I’m going to tell a story, you can sit back, relax, but be careful because I gagged at the end of this (in reality), so … maybe sit near a bucket? So it’s Tuesday morning and I wake up in unbelievable pain. My ear, throat, mouth - absolutely killing. If we rewind a bit, I’ve been having these odd bumps pop up. I have a few along my left eye lid and one on my lip. At first I assume it’s a zit or something, but they are not. I’ve had them now for a few months, but they never really get bigger or smaller or itch, so I forget they are there. I’ve been to the dentist and doctors, but no one comments on them and I kept forgetting to bring them up. Now fast forward to the present time, Saturday I woke up and my mouth sort of hurt, like canker sores, but nothing too concerning. I threw together a ragingly wonderful BBQ for my 2 pals from London who are here to visit. As the night grew on, the mouth pain got worse, but the alcohol consumption grew to a staggering amount so my ability to give a shit about anything also dropped to a remarkably low degree.

Sunday morning I wake up and my face basically just hurts. I didn’t really know what to do about it, I thought it was from something I ate or that I burned my mouth on the hut dog I ate (which I did), but honestly, I just couldn’t figure out what the heck was going on. Monday it got worse and I talked to my doctor who made me see her this morning. Turns out…I have a yeast infection in my mouth. Bogus. Now, not only is it in my mouth, but it moved to my eye, throat and ear drum. Yeast Everywhere! Those bumps on my eye and lip? Yeast. Um, NASTY?!?! It’s all from my medicine and there’s absolutely nothing I can do to prevent it, but I can stop it. I need like a yeast machine gun/oozie/molotov cocktail. So for the next two weeks I have to take this medicine and hopefully I’ll be able to keep my teeth.

What? Yeah. It’s so bad along my gumline on the back of my bottom teeth that she’s worried I might have to have a dental surgeon check it out. I think parts of my body are sad that they didn’t get to have surgery or something done to them, so they are rebelling in the most glorious of manners.

I do actually feel a bit better. I’m a few hours into my huge dosage of meds and it’s certainly helping. I hope by friday I’ll be jim-dandy and ready to head to NYC with the brits. Having them in town is fantastic, but being sick while they are in town is less than awesome.

4 Comments | Permalink

About

Hello. My name is Danielle (Dink to my friends). On 09/02/08 I was diagnosed with Hodgkins Lymphoma. This blog is a place to keep friends and family updated on how I feel, treatment, and life in general.