Friday, December 12, 2014

Hospitable Hospital

For everyone who only reads the blog and doesn't see facebook posts, on Tuesday, December 9, this was my post on Facebook.

CALLING ALL PRAYER WARRIORS: What started Friday evening as sporadic, moderate pain, has increased to severe, constant pain. The area around the tumors has become extremely swollen and therefore painful. Lymph fluid is building up and forming pockets around the tumor. The skin has been stretched too quickly, is shedding, and in some spots raw. I'm wearing a compression bandage which helps with the pain, until I need to remove it to change the bandages. I am considering going to the hospital...it's that bad!! So please pray for swelling, lymph nodes, pain and of course, wisdom in this whole mess. Thanks.

I didn't want to be in pain any more, but I didn't really feel like being suicidal for the next three months again either. And since that's what happened the last time I went to a hospital, I really was trying everything I could not to visit one again.  

If you've been following along for awhile, you know that my last checkup at Hillman in March was not good. Not because of bad test results, but because of the way they treated me with their bullying tactics. I don't avoid hospitals because I think I know everything there is to know. I avoid hospitals because there aren't enough doctors willing to admit the same. They don't know everything there is to know either. Most of them just pretend like they do.

After days of being in pain, I decided Thursday evening I had had enough. It was time I go to the hospital. I didn't know how they were going to help me. Perhaps the only advice they would have for me would be to get the thing cut off. But, seriously, at this point nothing mattered to me. Okay, so it mattered a little. I really still didn't want surgery. But the pain was definitely more than I could continue to handle. On a scale from 0-10, it was without a doubt a 10.

Now that much pain for that number of days, phew...let's just say I was a wee bit of an emotional wreck. Even in the emotional state that I was in I knew I couldn't show up at the hospital looking (and probably smelling) like a homeless woman. Let's just say bathing may have taken a back seat to pain control for a few days. But after bathing, Bob and I talked and decided to wait until morning for a number of reasons.

Keep in mind I was praying (and maybe a little begging) about this all week. Go to the hospital...not go to the hospital...which hospital? I was back and forth and all over the place. I didn't want to go, but I didn't want to be in pain. I doubted there was anything they could even do for me. I doubted they would have any clue what caused this. 

So the next morning, while sitting in the car, ready to leave, I finally make a decision about which hospital to go to. I had no real reason for picking one hospital over another. It was more, oh, well, let's just go to Shadyside [hospital]. 

I was nervous. I was nervous that they would be mean to me. I was nervous they were going to be critical and judgemental. I was nervous they wouldn't be able to help me. I was nervous that they would say the only way they could help was by doing surgery. I was nervous that they were going to do tests and I was going to get bad news. I was nervous they would want to start an IV and they might not be able to. 

We walked into an empty ER. Did I mention Bob went with me? Bob went with me. After the last time, he wasn't going to let me go it alone. He felt horrible about not being there to help defend me. Defend my choices. I get called back before I could even get comfortable in my chair.

Our male nurse comes into the room. He asks all the usual questions. You know, all the ones they ask when you have c*****. Now this is usually the point where I get recognized for being crazy. I have c*****, no doctor, no conventional treatment. I'm sure they don't run into people like me everyday. But, no, he didn't seem fazed by me. And remember I said my pain had been a level 10. It was at a 0. No pain. Weird, right? 

I was still feeling very guarded. I was convinced that they would call an oncologist to consult on my situation and that would be the very last type of doctor I wanted to see, figuring they would be the most harsh with me. 

The doctor walks in and introduces himself. The only thing I was concerned with was locating his credentials. Or I could just ask him. So that's what I did. Yep. Just the ER doc. Good. Instant relief.

Now for the hard part. I have to show this guy the mess that is my breast. You can't even imagine what this thing looks like at this point. Besides the obvious tumor on the inner side of the breast, now I have some massive, fluid- filled I- don't -know- what overtaking the outer side. It's red and purple, bloody from the outer layer of skin falling off, inflamed, and just plain awful looking. 

I pull down my bra on that side and remove the surgical dressing and gauze pads. I described what had been going on to him. He asked me a few, not many, questions about what treatment I've had. Now at the same time I'm trying to deal with this seeping wound. He handed me some extra gauze pads and said "you seem very skilled at handling this independently. I won't try to take over". But no critical remarks. 

He ordered blood work, a chest x-ray, and a ct scan. And we waited. And that IV line, went in with no problem

Remember, how I said there was no pain? Just as soon as that doctor walked out of the room, probably while the door was still closing, that ugly, painful sack did what I had needed it to do. It broke open and spilled out, well, stuff. I thought it was filled with lymph fluid. I thought maybe my lymph nodes weren't working properly from possibly being blocked. But this, this wasn't lymph fluid. It was super thick blood. Which after seeing how thick it was I then knew why when I tried to aspirate it at home it didn't work -it was too thick for the size needle I had.

So I'm draining and waiting. And I'm nervous. Not scared. Just nervous. The last time I checked the status of my condition was 9 months ago. That's a really long time when dealing with such an aggressive c*****. Really long. My fear was that it may have spread.

Even though we were there for a total of four hours, everything seemed to go by pretty quickly. The doctor returned. He had the results of all the tests.

All the blood work came back good. No indication of an infection. Liver enzymes were good, kidneys were good, everything was within a normal range.

No signs of the c***** spreading to the lungs or bones in the chest.

Huge. That's huge. I haven't had conventional treatment in 20 months with a c***** with a growth rate of 90%.  So even though it is still in the breast, it's only in the breast. That's proof of my success.

The doctor never suggested returning to conventional therapy. In fact he said things like "you've had some obvious success" and "what you're doing is working to some degree so how can I tell you not to continue". This wasn't based on things I had told him because I told him very little. It was based on my records that he had access to and the results of those tests.

And the best part of the whole story happened as we were getting ready to leave. Bob and I were thanking the doctor for being so kind to me. I was explaining how it took a lot for me to even come to the hospital because of how I had been treated previously for my choices. And his reply, "Let me tell you something. I am a trained oncologist working in emergency medicine now. That should tell you something. There is no one way to treat something. How can I be judgemental of your decisions when I wasn't part of that decision making process. And I apologize for their behavior. It is only because of their own insecurities for not knowing." Yep, he actually said that to me. I didn't imagine it, Bob heard it, too. I only wish I had it recorded so I could listen to it over and over and over again.

To sum it all up - I'm in very little pain, more like discomfort. Not because of anything they did for me at the hospital. They weren't really helpful in that way. Maybe if it hadn't broke open, they could have drained it for me. I don't know. The doctor didn't have a good explanation of what caused this. I have some guesses, but they are just that. Guesses.

From beginning to end this was the best hospital visit I've had. Everyone was very kind and compassionate. It could not have turned out more perfect. Thank you for all the prayers...I would say they were answered today.