I know it has been awhile since I've posted to any of my blogs and I'm sorry. I know it lost me alot of readers but that just can't be helped right now. Before Christmas I received the results of my recent CT scans and ultrasound. As I said before, the purpose of the scans was because an Octreotide scan I had showed uptake in my neck along with questionable spots in my heart and right pectoral wall. We wanted to be safe rather than sorry so I had the other scans on December 19th. Well the results were not what we were expecting to say the least.
Good news: Results for the heart- They feel that it is nothing more than a heart murmur at worst but I will still have a few more tests to make sure. So heart is okay.
Lump in pectoral wall- They feel that it is probably just an infected lymph node but not sure if it is a bacterial infection or the medullary cancer. Either way it's one lymph node in that spot and not worth worrying about at this point.
Okay news: I have a total of eight cancer infested lymph nodes in my neck. There are three on the left side under my jaw, one on the right side under my jaw, three on the right side of my neck, and then the one on my left side that we already knew about. The plan at this point is to remove the one on the left side no matter what and then if biopsies confirm medullary cancer in that one I will be sent to either Dr. Jeff Moley in St Louis or to MD Anderson in Houston to have them pick through my neck and remove every single lymph node etc that they can find. Dr Moley is highly recommended and will not miss anything. He is my best chance for keeping it out of my neck at least for awhile.
Now for the bad news: We now know why I've had this cough for so long. They found six nodules in my lungs at basically three in each lung. They are all around the size of pencil erasers right now. They also found cancer infested lymph nodes in both armpits and one in my right breast (not behind it like the other thing but in). What does this mean? Well it means that the medullary cancer has definately spread past my neck and isn't curable but that isn't as horrible as it sounds. I already knew all that so its okay.
We can't do anything about the lungs right now because the nodules at the size they are now aren't worth going in after. They might take years before they are actually big enough to bother operating on and even then they have trials going on right now that are showing alot of promise in maintaining and shrinking medullary tumors. So that means that the cough is here to stay.
I have been exceedingly tired and had been sleeping almost ten hours a night which is something I haven't done since I was little. When I went to my Family Doctor and told him he said it must be depression. To be honest, I was extremely pissed off! I knew it wasn't depression and I was feeling just fine! After having bloodwork done we now know that my thyroid levels (TSH) were at 19 which is definitely off. That explains the extreme tiredness and is easily fixed by upping my Synthroid.
No clue still why I can't eat without getting sick but I found something that I'm going to ask my PCP about. It might just be a simple matter of I got food poisoning once, the bacteria stayed, and now I have chronic gairdisis is all. So if that's it then I will be eating again soon.
So that is the update. I have an appointment with an ENT doctor on January 8th My endo would have liked it to be sooner but that was the best they could do which I understand. The ENT doc will check my neck, maybe do another scan, and then decide how we go about removing the left lymph node that is pressing on my carotid artery. That should take care of a few problems with it gone. Hopefully one of them is the mini-strokes. I'd like that alot!
I will have whatever other bloodwork and scans need done within the next two weeks and probably surgery by the middle of January at latest. Then when we get the biopsy back its results will decide if I'm taking a little vacation or not. If not then we just wait for the cancer to get bigger in my neck and then do surgery. I know it sounds stupid but since we can't do radiation or chemo and we already know the cancer has spread, it really doesn't make sense to cut me open constantly for the little stuff.
So don't worry. I throw up alot, I'm getting over being so tired, I cough alot, and I've got a bitch of a cavity but Christmas was nice this year and I enjoyed it. I got the one thing I wanted most- not one single argument the whole day! It was awesome! I'm content and I'm enjoying my family.
4 comments:
Hi,
I´ve been reading your life story the of of the past few of years and I don´t have words. You are very strong.
I´d like to advise you to eat cooked carrots and oats with linseeds (just with hot boiled water), that should calm your stomach down.
Drink fresh carrot juice which you should make yourself. Make some for the night so you can drink when you get thirsty. Fresh (homemade) orange and grapefruit juice in the morning and during the day.
Red apples or cooked apples are also good.
Avoid meat and fat exept for olive oil. Avoid all produced sweets and drinks.
The there is nettle tea and horsetail tea (good for the lungs - silica ) and viola tricolori (cleans the blood). And avoid cabbage, broccoli and brussel sprouts, green selleri. Remember even to eat onions and garlic (thin sliced with some lemonjuice and olive oil). And after all keep your neck warm with a warm scarf even at night, those lymph nodes may just clean up by themselves. And also skip coffe and white sugar.
This is what I´m trying to do.
Hope you will get better. Best regards.
Roza
Hi- tonight is my first time at your site. I work for an Oncologist in New York and see this stuff every day however it's rare to see someone handle it with such strength and grace- especially to your degree. I must say, since starting my job at the medical office, I have gained a whole new perspective on life and what is truly important. I'm joining your community. I hope you take care of that nausea so you can eat soon. I'm not a religious person but I feel compelled to pray for your wellness. All the best...
You are in my thoughts and prayers!
All I can say is WOW and you are a strong woman. Keep your chin up and know that folks are pulling for you.
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