Go out and buy a couple two liters of soda. I'm not too picky on brand or variety, diet or regular. Any sort will do. Now get a cup, again any kind will do. No ice, not for the intents and purpose of our demonstration. Now before we start pour one liter of your soda into a pitcher. Measure if you can't eyeball it but get as close as possible.The remaining soda? Well let's go outside so as not to make a mess.
I hope you're outside with us now alongside you! It's nice out, you should mow the lawn and maybe call your mom. Anyway get a good feel for the heft of the remaining soda and understand that's how much fluid was suctioned out of my lungs last night. That's how much excess fluid I've been "living" with for quite some time. It's been the main contributor towards my cough and a bevy of other complications and it goes without saying but I'n not going to miss one fluid oz.I'm st as a ill recovering and not claiming any sort of victory but damn do I feel better and in this fight against cancer I can and do take whatever I can.
A small victory. One say at a time. My new hospital is such an outstanding difference from UIC. I'm shocked at how much better the level of treatment and comprehensiveness of the staff.. No stones unturned. So things are on the uprtick, if only for a day.
It's been a little bit since my last update but that time has been filled with a ton of stress, uncertainty, more stress, and finally relief. Thanks to everyone that sent words of encouragement, it means a lot.
I'm not going to rant and rave, at least not though this medium, but UIC Hospital can truly go die in a fire. I have never been a sick person in general so this past month was my first time ever being hospitalized. That said I don't need experience to know the overall treatment I received and the incompetence that infects every corner of that building is unacceptable. I have a list of complaints and an even bigger list of stories regarding my treatment and the missteps involved. I'm out, thankfully, and will need some time to recover and thankfully I am doing just that. Sleep and I are getting reacquainted and it feels so good.
I saw my new oncologist at Kellogg Cancer Center yesterday. UIC has thus far failed to send my records over despite 3 requests, so we don't have a ton of data to work with but we've managed to put together a basic game plan going forward and that's good. I trust him, I like the facility, and I'm comfortable with them. Those are all key.
Other than that, things are status quo. The mass in my neck is significantly smaller and I hope that continues. Doing my own care at home is a little harder than I thought but not significantly. I think I'm managing just fine. So I'll keep doing that, you guys keep being awesome and ask your friends to toss a couple bucks my way to help fund this Victory Lap road trip and we'll all keep kicking ass. Deal? DEAL!
Still at UIC, which is as much a surprise to all of you as it is to me. I've had several setbacks here and there that have kept me here, all of which are frustrating. I want to be home. But I want to be safe. It's all very complicated and maddening. I miss the outside world, but progress is progress and the chemo does seem to be having an effect on my cancer so I'll take what I can get.
The latest setback in my immune system, namely that it's weak. It's a direct result of the chemo but it is what it is. They're going to give me some stuff to boost and see how it goes over the next few days so I'm hopeful on that front. Haven't had any real bleeding incidents to speak of, and I'm feeling better overall so those are good signs. My blood pressure, heart, et al are looking good so more good signs. Just continuous monitoring of my hemoglobin levels and, now, immune issues. Sigh.
Morale definitely took a hit and my appetite is one victim of that. I'm doing my best to eat but my mouth hurts from chemo so it's a painful endeavor. Not nauseous or anything like that and I generally get by, but these unadvertised side effects can kiss my ass.
In light of all of this, however, I continue the good fight and will keep doing so. I will kick this thing's ass and emerge victorious and healthier. While I do that, it's just a matter of staying positive and drawing on the strength of all my friends, family, and caregivers. So keep it up! You keep doing your part, I'll keep doing mine.
On medical decisions, refusals, and "no pressure" guilt.
In my time at UIC I have refused several treatments and stood up for my rights more than I imagined possible. I never knew how astute I had to be in my own care. I guess I had this image in my head that there would be a team of 3-4 doctors making decisions, explaining them to me clearly, and executing on them with everyone on the same page going forward. These are doctors, after all. It's their job to take care of me.
But nothing is ever that simple. I don't have just one team of 3-4. I have 3-4 teams of 5-10. And none of them talk to one another, or communicate what we discuss. There's no consistency or functional interaction and it feels like I'm repeating everything to everyone and in return having everything told to me multiple times, with small deviations every time. Maddening.
This started yesterday when the mass in my neck started bleeding. Signs point toward it having shrunk due to the chemo and the bleed starting there. The main concern it being a corrupted artery tear which would be a huge emergency and BIG deal. So a plan was put into action that started with getting an arterial CT scan and going from there. Scary stuff, to be sure. So off to CT I went for the scan at 10PM and we waited for the results.
And waited we did, with no word from anyone as to what they were seeing. In fact my mom and sister went home without answers and I dozed off not knowing how life-threatening my condition was. Unacceptable.
Cut to today and a lot of decisions were being made for me under the guise of me being in control... but not really. They wanted to operate and operate right away. Laying around all the risks, between anesthesia to the procedure to the aftermath, it was very foreboding. But the straw that broke the camel's back was the fact that I am in no immediate danger and the procedure itself would just be a stopgap measure, a temporary fix. Not worth it. So I said no. I refused. I stood my ground and held steadfast. And it felt weird.
Hopefully I get out of here tomorrow. We shall see. I am feeling better, albeit a bit sluggish after not having eaten in 36 hours. Despite setbacks I'm still doing well. Plenty of stories to tell, can't wait to tell them!
Medical stuff is frustrating. It often feels like a giant game of darts where you toss and hope for the best, augmented by skill and experience. The human body is so weird and complex that sometimes you have to make your best educated guess and see how it goes. And that's frustrating to go through.
The plan is to get discharged tomorrow and go into outpatient care at Kellogg cancer center for the remainder of my chemo/treatment. I've been there before and it's an excellent facility. Definitely have high hopes for the opportunities it'll afford me, from quality of care to fringe stuff like therapy and massages. All in all a solid choice.
Chemo itself has been going fine, aside from a hiccup yesterday. I was pretty sure I was on bag 3 of 4 for my treatment, each bag being a 24 hour process. It would mean I started bag 1 on Tuesday and it progressed Tuesday to Wednesday, then Wed to Thu, Thu to Fri, and then the last Fri to Sat. So imagine my surprise when they tell me I'm on my last day and that I'm leaving Saturday. Confusing to say the least. Long story made short we figured out there was a miscommunication but it couldn't resulted in me not getting my full chemo treatment which, in my uneducated medical opinion, is bad. Thank jeebus basic math skills prevailed.
Anyway update is running long. I'm doing well and so happy with the support and encouragement everyone is showing me! Keep it up and I'll do my best to kick this thing's ass as fast as I can. Share the campaign, tell my story, spread my legacy! And be good to each other.
So day 4? I think 4, of first round of chemo and things are pretty good! Kidneys are functioning like champions, no nausea or anything to report. Appetite while curtailed is still there, and my mood is GOOD no small part in thanks to everyone sending kind words of encouragement and support. I'm feeling optimistic as ever and ready to keep marching on.
I hope to get out of the hospital this week and into outpatient care, either here or a hospital system further north. I also hope to meet for some long overdue coffee with friends. This GoFundMe is approaching 10% of my goal and while that's not concrete at all, I'm pretty happy about it! Still working on my rough road trip plan but it still involves heading east into Indy for some folk, Columbus for other folk, further east for my own selfish purposes, then south for some unexplored country. I'm really looking forward to that.
To help make it happen, pass this GoFundMe along! It's going toward a great cause and gives me more to look forward to at the completion of my treatment, whenever that may be. Hope and goals help tremendously, as does your love and support.
One question I got was about the amount to be raised. It's an idea, which is why I'm using GoFundMe. If I don't reach that number, it's PERFECTLY FINE and I'll do what I can. If I end up only being able to afford a kiddie pool and sit on the sidewalk for an afternoon gloating in my victory so be it. I'd just love to get out and take in the wonderment of this country that I love so much.
My name is Matt Woff,and I'm about to kick cancer's ass. Not just a little, but a whole lot. I was diagnosed with a squamous cell carncnoma in my neck that has since spread into my lungs. It causes me no end of discomfort and consternation but know what it hasn't caused me? Pessimism in any way. This cancer is going to die and oh boy is it going to die hard. And when it does? I'm taking a victory lap around this country.
Rent an RV not only to cut costs on hotel stays but increase the experience! Pack my cameras, laptop, and document all the fun, interesting, morbid, and engaging people I come across. I want to reacquaint myself with the country that I so easily overlook being a city boy. Take a week or two. Or three. Enjoy life. Gloat in my victory, See life driven before me. Hear the lamentations of its women. Soak in everything. Document all I see. Jubilate. Revel.
Come home and resume life, whatever that means. I'm not looking for a lifelong vacation or some luxury getaway. Just the break that I think I'll deserve after taking cancer by the scruff of the neck and tossing it though a window. And for that I need your help.
I am not a wealthy man, financially speaking. More to the point I am essentially destitute. I live with my sister in her condo, no ability to work because of my cancer, no savings to speak of, and on medicare/public assistance. This is all very new to me, mind you, but it's my reality. Help from my friends, family, Internet Strangers™, corporate sponsors, intelligent animals, and anyone else will help me achieve my goal at the end of this arduous, stressful road. I'm a good person and like most good people, I deserve a break from time to time. This is my break.
Every little bit helps. It all goes towards expenses and a good cause. I'll be sure to update everyone with my whereabouts and who knows, maybe I'll make some guest appearances if contributors and nearby and want to meet! This world will be a new and exciting place for me, I can't wait to explore it.
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