11/01 Mon.: I was excited to finally be going in to see Dr. Goy and get my formal diagnosis. Having been told by the previous oncologist that he was "over %98 sure" I had Hodgkin's Lymphoma again, I was expecting the same kind of treatment. The first doc had suggested it might be 4-6 months of chemo followed by a stem-cell transplant, so I was thinking I'd hear the same thing from this doctor. Adam had taken the day off to come with me, and we had our children at Danae and Jerry Fail's house.
After 1 1/2 hours of waiting, Dr. Goy walked in, asked me ten questions in one sentence about my symptoms, flipped through my binder/file, and went stalking out of the room shouting, "Guys! Guys!" It looked like something was missing from my binder? Not exactly encouraging. It was another 40 minutes before we saw him again. Adam and I were having fun joking around while in the waiting room, trying not to think about how nervous we were. Dr. Goy came in with a couple nurses and explained that we did not know yet was I had. He explained that the results from the biopsy were inconclusive, and that all of my blood work appeared normal. The lab had run over 50 tests on my biopsied tissues and had found "similarities" with Hodgkin's Lymphoma (HL), but that it appeared more "aggressive" than traditional HL and there were some "discrepancies" in some of the tests. My heart sank. Definitely not the news we had been expecting. Dr. Goy said we'd be running another 25-50 tests on my tissues, taking some more blood work, and doing a bone-marrow biopsy that day. He was sure to point out that he didn't want to get me started on the traditional treatment for HL if I have something different. He wants to get me the right treatment for the disease that I have. Understandable, but hard to take the waiting!
Dr. Goy said he'd be gone the next week, but we'd have all the results by the 15th and I could see him then. Another two weeks?? I was not happy, and asked if he thought it was a bad idea to keep me waiting as I'd already been waiting 40 days since first going to see the general practice doctor. He reassured me that I didn't have the type of cancer that needed treatment right away... Um, how does he know, if he doesn't even know what I have!!
After the doc left I started to freak out about the bone marrow biopsy. That's what I get for reading all of these accounts online! I asked for a Valium (as I'd read someone recommend) and the nurse gave me a look. One that said she thought I was being a wimp- which I probably was, but hey, I have cancer! Can't I be allowed to be a little wimpy on occasion? :) I was annoyed with her attitude but hey, she was still getting me something. I was given a Xanax, I'd never had one before and don't think I'll ever want another! Another younger nurse came in and told me it wouldn't be that bad of an experience- so I asked her, did she know from her own first-hand experience? Unsurprisingly, she said no, so I said I wanted to slap her- jokingly of course! But I still think I embarrassed Adam. She seemed to think it was funny, as I'd intended!
It turns out the nurse was wrong about it not being that bad! I was laid on my stomach and told to clutch a pillow while the doc cleaned the area above my left butt cheek to draw from the hip bone. I was then injected with several lidocaine shots to numb the pain. According to Adam, the next step was to get down to the bone. He said there was a lot of blood- all I could feel was some pressure. Then, the really nasty part started... I thought I could feel a corkscrew digging into my back with a lot of pressure squishing me into the bed. The grinding was what did me in! The doc said, "Well, this is a very tough bone!" I had to wonder what the nurses would do if I puked all over the doctor. He proceeded to pull out the corkscrew several times (Adam filled me in that every time he pulled it out there would come blood and junk, then back in for more) until he finally broke through the bone. By now, I felt completely sick and shaky. But it wasn't over! Here's where the needle went in to draw the marrow out- I could feel the pulling sensation all down my leg. If I'd eaten anything for lunch it would have been all over that room! I have to say, my c-sections were easier to go through!
Afterward, to make matters worse, I went into shock! I started shaking, crying, and I was cold. It was so strange! My mind was completely rational, but I couldn't stop even though I knew it was over and that I was in no pain. To add insult to injury, when I finally felt like walking and ventured out of the room, I had 10 nurses staring at me with no compassion in their eyes. I apologized and said I was embarrassed for overreacting... No comment from those mean nurses! However, Dr. Goy was nice enough to pull me away from the nurses to reassure me for a minute.
After all of this, I had to go get my blood drawn again and wait in line to make another appointment- all with puffy eyes and still a bit shaky. Overall, not the best 5 hours I've spent at a hospital, but definitely not the worst!
I am so sorry you have to go through all of this. I am thinking of you and love ya!!
ReplyDeleteCarly
Medical people can be so insensitive. It's as if they forget that they are working with humans with feelings because they don't want to deal with the personal emotions that go along with witnessing the suffering of others.
ReplyDeleteHi, you don't know me, but we have a mutual friend, Andrea, and so I am going to follow your blog if that's alright. It makes me so upset and sick that those nurses would treat you so awful. Honestly, why? Why? Why would you do that to someone who is obviously in pain? No compassion. I pray that you do find kind nurses and if not just know that there are people out there that are praying for you and do feel compassion for you and your dear family! You are awesome!
ReplyDeleteI agree with the last post. I hope you do find some nurses with some compassion. I have been thinking about you so much I wish that I was closer and could help you out. I miss you and love you good luck.
ReplyDeleteThat's an awful experience!!! And what nurse in her right mind would say that a bone marrow biopsy doesn't hurt??? The put Pediatric patients under general for bone marrow biopsies!
ReplyDeleteI'm so sorry you went through that. And the Xanax probably added to you freaking out... It's a psychological drug so emotions are normal.
yeah it's good article and your doing good job for sharing information. I have one doubt one of my close done the bone marrow but some times had paining.can you share information.
ReplyDeletewhile searching this information i got one site that also good.
http://www.pediatriconcall.com/fordoctor/diseasesandcondition/article.aspx?artid=40
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