I showed it to my family doctor and she didn't know what it was and stated it was possibly an ingrown hair and may come to a head, and advised me to keep an eye on it, and also to let my chemo doctor know, because I am at risk for infection. So when I saw Dr Glass one week later I told him about this lump. He too suggested keeping an eye on it and told me to let him know immediately if anything changes.
This past Friday night, after my infusion I was laying on the couch with the kids watching a movie. When I tried to reposition myself, it felt like my shorts were digging into the crease of my thigh where my leg meets my body. It shot blinding pain. So I went into the bathroom- and I discovered that my little blueberry lump was now the size of a mozzarella stick.
It is still not red or hot to the touch. Something is under my skin and it is bulging and it is painful. But it seems to be rubbery and movable. It hurts if you touch it which means it hurts all day long because where it is my clothes are pressing on it all day long. It also hurts when I stand or when I sit or certain ways I move.
I showed it to my husband which was a mistake, because he freaked out and told me that I should get it checked out immediately. He said that thing doesn't belong there it looks like you swallowed a piece of firewood. He made me more nervous.
So the next morning I checked my handbook which was given to me by my chemo nurse Katie, she told me on my first visit that if I had any problems at home to call this number and she starred it and circled it. So Saturday I called the number in my chemo book. I got the answering service and they took down my message and told me someone would call back in 20 minutes.
When the phone rang the person who called me back said, because you are Dr Glass's patient you have to call a special phone number not this one. And when she recited the phone number I knew right away I was calling my Dr Farrell, my Neurosurgeon. I really didn't understand why but I called that number anyway and I left my message with his answering service. A half an hour later, his on call called me back and I told her the story of my lump that had been there for seven weeks but popped out and was now bulging overnight. She asked me why I called that number she said this is neurosurgery. I said yes I'm aware of that but I called the infusion lab and they said because I was Dr Glass's patient I needed to tell you. She said because it's the weekend you can't see the doctors until Tuesday so what you need to do is go to your nearest emergency room that has a hospital, do not go to an urgent care they won't know what to do with you go to the hospital and get it evaluated. In the meantime I also texted my friend who also works for my family doctor and she told me to do the same thing. I also texted my cousin who works in an ER she also agreed it needed to be checked out.
Like a jackass the night before, I had search the Internet and I was positive that I had a femoral hernia, and my intestines were strangled and my tissue was dying. My theory was backed up by the fact that I had just come back from Ocean City from a four day vacation at the beach, but I forgot to pack Senokot and I had been backed up for six days My doctor was quite horrified The last time this happened and he has warned me over and over again about how dangerous it is. The leading cause of Avastin death is constipation and we are at risk for holes in the intestines.
So I was pretty sure that I was dying. Another risk that comes with Avastin is blood clots. Maybe I didn't have a hernia maybe I had a blood clot that would cut loose and shoot straight to my lungs or brains and kill me when I went to sleep. But my first instinct when I first felt it, was that it could be a peripheral nerve tumor. And the only reason I thought that was because of the shape it was it feels like something is growing up and around my nerve. But if it was that what I was worried about is why it grew so fast overnight. I am on chemo to stop tumor growth so if I did sprout a tumor that big overnight perhaps the chemo is not working or it has an adverse effect and accelerated them. I knew I had to go to the ER if only to calm my mind. I spent most of Saturday on the Internet trying to self diagnose and knowing better than to do that.
Sunday morning I got up and I took a long hot bath and then I had a pork roll egg and cheese sandwich for breakfast, I was pretty convinced I was getting admitted so I packed a bag, and in Photoshop I edited one picture of me and my kids from the beach and meet at the wallpaper on the computer in case something bad happen and I have one friend who knew my motive it was Jenny -and then I drove to the ER oh so slow listening to my favorite song. Because all in all I felt really good after infusion number six and I could be wrong but I think my hearing is coming back, I can listen to music now but only to songs that I've known every word to from before, and right now Bon Jovi's on my loop, I'm stuck on I'll be there for you and never say goodbye. I still can't understand the words to new music like my kids favorite songs.
OK well here's where at my nightmare begins. I waited in the ER for one hour before they called me. The ER nurse was rude and despite me telling her several times that she had to face me because I was a lip reader she still talked to me with her head down while she was writing on paper, and when I would ask her to repeat it, before I was done speaking she would throw her head back and shout over her shoulder what she had just said but I didn't get it again because I can't hear you if I'm talking. Hated her. So I had to lay down and Let her see this lump. She immediately went and got the doctor. When the doctor came in she was an older lady her glasses rested on her nose. And if you ever saw the movie father of the bride, she had the same accent as Fronk and Honk, the wedding planners. So between my hard of hearing and her terrible accent I had no idea what the hell she was saying and she had to repeat it several times and she was right in my face so I could read her lips which didn't help and she had tremendously horrible breath, The kind of breath that screams dehydration she clearly needed a drink. So she told me that I had a hard cord like fibrous lesion and the only way to know what it was was to biopsy it, and they don't do that there. She told me to go back to my chemo Doctor, who I'm not going to see for two more weeks and let them do a biopsy. I was concerned that I would need an emergency surgery, but I cannot have emergency surgery because Avastin is a bleeder and you have to stop it for one month before anyone can operate on you. I was worried that I was in trouble and they would have to do surgery and I would bleed to death in that hospital and now she's releasing me and filling out my discharge papers. I said aren't you going to do an ultasound or an MRI or take pictures of this thing in someway?! She said there's no reason to do that she said I can feel it and I can see it it's a hard cord like fibrous lesion. And she let me go. I was in the waiting room longer than I was in the ER room with this doctor.
Monday was Labor Day which gave me more time to search the Internet and read all the ways that I would die.
Tuesday morning at 8 o'clock my family doctor's nurse called me and told me to come in at 1:45 to let my family doctor look at it. So I went to go see Dr. Moore but before that I called my chemo team one more time to try to let my chemo doctor know about this lump. They again transferred me to the very special number and I told my story for the fourth time. I thought for sure my doctor or my infusion nurse, or nurse Kevin or somebody who knew me would call me back but they didn't so I know not one person got any of all four of my messages.
So Dr. Moore said it is definitely not a hernia or a blood clot it's not an emergency and it's not going to kill me. She agreed that it needs to be biopsied and she called it a mass. Mass to me means cancer so I freaked out. She smiled and said how can you have cancer you've been on chemo for three months. Touche Dr. Moore. She said we need pictures of it to try to get a better idea of what it is and she wrote me a prescription for an ultrasound.
Now this whole time I had Dr Glass's cell phone number but I was trying not to be "one of those".
On Wednesday I did text Dr Glass -all I said was I've been trying to get in touch with you since Saturday can you please call me when you have a chance. My phone rang in mediately. I told him my story and he said, well me and Dr. Farrell will be in New Jersey on Thursday why don't you come in at noon so we can look at it. I finally started to feel better and I finally realized why I had to call a special number. Dr Glass and Dr. Farrell are associates. One is a Neurosurgeon and one is a Neuroncologist.
So yesterday I went for my ultrasound. Did you ever have those dreams or actually nightmares where you're trying to run but you're not getting anywhere? This is pretty much what's going on. Yesterday at my ultrasound the ultrasound tech felt this mozzarella stack that's growing in my leg, and she put the wand with gel over it, and she said hmm, nothing is showing up. So she went and got the radiologist and she said I can feel it I can actually see it but it is not showing up on the ultrasound?!? He gave her suggestions on better ways to take pictures of it. He suggested we use a gel pack because it will raise the wand and show you things that are closer to the skin. Nothing she did a whole ultrasound taking pictures of nothing.
Six days of doctors and tests and emergency rooms and I still don't know what this mozzarella stick thing is.
I'm going to Voorhees today at noon to the top -I'm seeing both of my doctors who are very skilled specialist. If they can't figure out what it is then perhaps aliens came and implanted me when I was sleeping. I am praying for answers today but I do feel relieved now that I know I'm not going to die or need an emergency surgery where I bleed to death. Has anyone ever had this wiggly rubbery cord like fibrous lesion!!? If so what was it?? The only way to describe it is it feels like a tendon or vain because it's about 3 inches long and it's is fat as a mozzarella stick and it hurts if you touch it like a bruise. And it hurts when I move around especially if I shift my weight or move my leg.
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