I digress, since my last post, not much has changed except the size and pain level of this "lump/mass/blood clot/schwannoma" depending on who you talk to.
So I got to see my chemo doctor that Friday a month ago, and he took one look at my "lump" and said, it's thrombosis, you have some clotting. There's no nerves there, only veins. It's a superficial blood clot, that should break up on its own. You can help it along by putting hot compresses on it, and we will just watch it.
Ahhhhh a blood clot! I knew the risks of avastin, blood clots are one of them. Now again, like all the crappy options to manage NF2, the very thing I'm trying to do to prolong my life is going to kill me anyway! "Doc, how long do I have until this thing cuts loose and shoots to my lungs and kills me?" He said, "I really don't think it's going to do that. It's superficial, they tend to break up on their own, but I will order a DVT ultrasound to be sure you don't have other ones."
Finally. An answer. My lump is a blood clot. I have 100% faith in my team of highly trained specialist. So the onslaught of texts I was getting about my "inept" doctor who should be doing more, were not only annoying me but offending me and eventually I stopped responding. I trust what he said, I'll follow his advice and I was finally satisfied that I had an answer. It hurts, it's bothersome, but at least I knew what it was, how to help it and that I wasn't going to die.
So one week later, after infusion 7, after a nap, it was a little bigger, bulging more and more painful. So I filled the hot water bottle, as hot as I could get the water and laid there with hot compresses.
When I went in to put my Jammies on, there were red lines webbing down my thigh, they looked like tree branch patterns. I assumed they were veins, I thought my blood clot burst, and that now it was traveling and going to kill me. So with the test in hand that my doctor wrote, we packed the kids ad Jim drove me back to the closest ER. I told them I had a blood clot we are watching, and that now it may have exploded and I showed them a cell phone pic of my leg. I gave her the script for the test, and they put a bracelet on me and said there was an hour wait and To go have a seat. My anxiety and racing thoughts took over and I felt like I was going to pass out. Full out panic attack. I'm going to die sitting here waiting. Within 5 minutes, the triage lady came out and called me into a half lit room. She said you need special tests, unfortunately, we don't do those here on the weekend. Head up to the ER with a hospital 20 minutes away in Pamona. She gave me my script back, and with my bracelet still on we left. When we got to ACMC, The waiting room was packed I showed them my bracelet and gave them my script and she said I can't believe that you have a blood clot and they didn't transport you here by ambulance!! But then she took that bracelet off and gave me a new one and told me to go have a seat again and this time it was a two hour wait. As we sat there watching a football game on the big screen TV and listening to a very distraught lady talk to someone on speaker on her cell phone giving a detailed account of her very Trumatic experience of calling 911 after a man she was caring for passed out and seeing him fall and rushing to the hospital. She had her cell phone on speaker and she was talking very loud and she called multiple people and she kept repeating the same story. The longer we sat there the less panicky I became, because if it was a traveling blood clot I would've been dead in the time they were making me sit there and wait. As it got near 11 o'clock both my kids scrunched up in their chairs and tried to lay down. Jim went to the counter and asked that lady how much longer they were going to make me wait. She told him there were two people ahead of me but ultrasound was getting ready and I was going straight back for my test as soon as it was available.
I suggested he just take the kids home and told him I would call him when I was done or when I knew something. So the three of them left and I waited for my turn. Finally I went back and had the ultrasound and then I had to go back out into the waiting room and wait for a bed to become available while radiology read the report. It was now after midnight and I started craving salt. I put a five dollar bill in the snack machine and got myself some $.75 Cheetos. The machine started spitting out my change back in all quarters and I loudly exclaimed "wooooo hoooo!! I feel like I'm at the casino!!"
The lady still speaking on her cell phone on speaker paused and gave me a very dirty look. I still try to have fun no matter where I am at.
By the time a bed had become available I wasn't even in there five minutes and Jim came back. He said the kids were laying together on the air mattress watching a movie and he locked the house up and left Leah to babysit Jimmy. Finally a nurse came in with the report. She said no blood clot was detected no deep vein thrombosis, and nor was that lump a blood clot. She said it's a tubular lesion measuring 2.3 cm x 1.5 cm X .03 cm. And so based on my history of multiple nervous system tumors, they believe it may be another nerve sheath tumor and they were getting my discharge papers ready. Jim sat forward and said "HUH?!?? Why the hell did the other doc say it was a blood clot?!?"
He was confused, I was confused, and all the way home, we talked about who was right and who was wrong! The highly trained specialist who knows my history and the drug he was giving me with evil side effects, or this ER. We got back home at 3 am. I laid down with my kids and went to sleep. Oh and my red spider web legs were angry capillaries cause I made the hot water bottle too hot.
Then last Friday, one week ago today, i had infusion #8! Same deal. On Saturday, I was in more pain, the lump got bigger, it was bulging more under the surface and Monday my chemo doc called me after he got the report. He said they really still don't know what it is. They're saying "based on your history..." So next time I see you, on Oct 16, I'll order a CT scan so that we can get a better look at it. I said, "Doc -this is definitely something that is affected by avastin because after the last three infusions by that night it was bigger and more painful. And if this chemo can make a tumor grow that fast then what is it doing to the tumors that are in my brain and spinal cord. I'm starting to panic that it's not working - and what if I'm one of the odd ones where my tumors actually get fed by this chemo and thrive rather than stabilize and shrink! Since we've started these infusions I am in much more pain than I ever was and I've actually never felt worse in my entire life". He said in November it will be time to retest to see if it's working I will have been on it for six months by then and we will see exactly what it's doing"
And so I've been waiting and putting hot compresses on this thing. But I noticed yesterday it had gotten even bigger and when I went to feel it, I noticed that you don't have to feel for it anymore now it's bulging under my skin so bad you can see it! It's not red it's not hot to the touch it's just as if something was implanted under my skin!! If you trace it with your finger it's still a hard tubular thing but it seems to be coiled up and shaped like an S now!!! I can't believe it's possible but it actually hurts even more and so yesterday I panicked and drove to my family doctor and I walked in and I begged her to figure it out! She took a look at it again and she said even though it did get bigger and now my temperatures running around 99 she said it feels a little bit softer and not as hard.
She said one possibility is a cyst a deep cyst that's in the fatty tissue. She wrote the script for the CAT scan, and told me to call to make an appointment -she also suggested I continue with the hot compresses. And while I was there I mentioned again how much pain this chemotherapy was causing me to be in and she said well chemo does cause a lot of joint pain. I said but my back is killing me my back is the worst. She said your back is a joint. I said I don't believe Roxicodone is helping me anymore than Percocets did, and I really feel that it's not as good. She said some people need that extra kick from the Tylenol, she said I will put you back on Percocet is it that's what you want? I said that is what I want I don't like Roxicodone but I also want to ask you about Mobic. My friend from my support group told me that the only way she could tolerate Avastin is if she takes Mobic, but I never heard of it and I don't know what it is. She said it's a nonnarcotic nonsteroidal anti-inflammatory. You take it once a day.
This pain has been unmanageable for about four months. I'm willing to try anything. So Mobic at night and percocets as needed. And today I will call to make the appointment for a CAT scan. I can't believe we are two months into this and we still don't know what this thing is and it's getting bigger and it hurts more!
So this is all I know this is your full update. My son is home from school today and our plan is to decorate the house for Halloween. I very much appreciate your concern and I know you're worried, but please spare me the texts today. Every time I post a blog update with detailed information I get a lot of text messages. Questions like what did your doctor say and how is your lump? The answers to everything you're asking is in this blog. I don't know anymore than what I just typed out. There are no secrets or special information that I've left out. If you text me I can not tell you anything more because this is all there is to know and I plan to spend the day with my son and I will not be answering any questions. I love you all and I thank you for following the saga I know you love me and please know that I love and appreciate all of you, and I know that you're worried but I actually get frustrated because some people have even accuse my doctor of being inept. I'm just as frustrated I have been to the emergency room twice and I have been to my family doctor four times and I've seen the chemo doctor twice. It really is a mystery and they're doing all they can to figure it out. I will post another update after I do the CAT scan and get the results and see my chemo doctor next Friday. To be continued......
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