Got to the hospital today to re-start my chemo only to be told that I have to reschedule my appointment. The test results they ordered hadn’t come back yet. They were going to do some testing on the portion of tumor retained from my last biopsy to see if my tumors will react well with this new chemo they have out. It’s in a pill form so I don’t know how sick it’s going to make me. The doctor seemed pretty sure I’ll be able to handle it well, but he thought the same of the Olympta and that shit almost killed me.
So, I’m not going to make another appointment until they call and actually tell me that they have the Path report in hand. If I have to take this shit, I don’t want to start one only to find out that something else is available to me.
So, while I wait for the path report to come back (one to two weeks) do I sit and worry that since I’m not on chemo right now, are my cells doing the funky chicken in there and spreading like little mice in my lymph system? Do I start freaking out if one of my lymph nodes starts getting larger, like last time? Or do I sit calmly by and wait for them to tell me where to go next. I’m hanging on a rope here and I don’t know how long I can hold on.
Off to watch Alcatraz with Joe. We tape it then wiz through the commercials. Have a great night all.
one iota of feelings I had going through cancer last time. From the sick to your stomach constantly to the gnawing fear in your gut but boy did I forget a big ole’ one today. I totally forgot what a withdrawal felt like.
They put me on Fentanyl (sp?) for pain when they took the tumor out of my neck. Now this is some rocking pain-killer and will knock a grown man down, I myself hardly notice it. Somehow either yesterday or overnight, my patch fell off. I can’t find it, so not really sure where it is, the dog probably ate it.
Anyway all morning I couldn’t figure out why I’ve felt miserable, pain in my chest, heart racing, sweaty, queasy, achy, cold and shivery. I thought I was coming down with something. I lay on my chair all morning feeling like I’d been hit by the Oh-shit truck. Finally at about noon, I noticed my patch was gone. Then I got hit with the reality truck. I wasn’t sick, I was missing my meds. Really baaadddd MOJO to go off your meds unassisted. I have a feeling that it will be many days for my body to catch up with the meds again. Wow, lesson learned for me huh?
Got tons of stuff flitting around my wounded little brain that I can’t bring myself to write about. Every time I start, my throat chokes and my eyes get teary.
I really can’t believe how many friends I have that I have never met. I belong to a national chat board for Lampworkers and have chatted with and cheered and cried for these women countless times. Now they are making my heart happy with the outpouring of love that I get from these women and men whom I’ve never met, but could probably tell you more about their lives than my own sibs (may the fleas of a thousand camels infest their underwear).
I can’t believe how many friends I don’t have close. There is not one person that would say OK if I called and asked to meet for lunch. I get the ho-hum, not today, maybe next week, I’ll call you.
Guess I’m just a bit soupy right now. I think I go crawl into bed and pull the covers over my head and just be for awhile.
I’m so scared and I want to keep my dog
And I’m totally terrified. What if the chemo didn’t shrink the cells? What if they spread. What if this pain in my neck isn’t just a sore muscle. I get a little freaky before getting the results of tests. I probably won’t sleep tonite. Too busy worrying my little head to sleep. I’m working on the shrug that I’m crocheting for M. It’s flying by. I think I’ll need more yarn for it tomorrow. I can’t wait till she sees it. Damn, off track again. Results can come out one of three ways:
- Everything went away, tra la tra la, and I never have to worry again.
- The tumors are there, but they have shrunk, so continue with the chemo.
- Gone too far, didn’t catch it in time. Tumors have spread. Sorry.
I’m sick trying to guess what the results will be. My stomach is in a knot and I can hear my pulse in my ears. Sounds really fast to me. I know my BP is through the roof. Just panicking
I did the one thing that I was not supposed to do. I went on the internet and looked up the survival rate for my type of cancer in the “recurrence” department. Numbers don’t lie, or look good. Of the 20% that survive a year half of those will have a recurrence in a year. Of the other 10% most will make it to the five-year mark. (which is right where I am) 3% survival rate based on where it is and the spread pattern and the tumors in the throat.
OK, starting to depress myself. Time to change subject. Really easy for me to do. Pool is open!!! I’m so excited to look out the back window and not see a black pit. Of course, the only ones enjoying it now are the ducks, Mom get’s such a kick out of letting the dogs out to chase the ducks. Someday, one of them is gonna get wet.
Quick report on how I’m feeling. All my joints feel like they are full of glass. My stomach is constantly sore, like everything I eat is poisoned somehow. I constantly hear the beat of my heart in my ears and it’s annoying the shit out of me. I’m fighting hard to maintain a “happy face” facade for Mom and friends, but I’m about to burst. Good news is that I haven’t thrown up in two days. I’m really very happy about that. My chest and stomach muscles need time to recover.
Well, it’s midnight and it’s raining. Think I’ll go curl up in bed and watch the finale of ANTM. Huggs to all who read this. I know I have some cards and letter out, just need to find the strength to do it.
Was kind of in a fog yesterday. Went to the Radiation oncologist for my first appointment. The good news is that they are going to wait till after my second chemo round to see if the cancer cells are shrinking without radiation. If they are, Party, if not, radiate. Radiation will be hard this time. They will be shooting around my vocal cords thus rendering me speechless for several months. Doc told me that my throat will be sore for at least 6 months after ending radiation, possibly a year. Not scratchy sore like a cold, but like you’ve been hit in the neck with a tire iron sore. Kinda like now, but worse. Swallowing will be a concentrating experience. No saliva either. Plus the fact that they might have to overlap radiation fields from last time, which is bad. Your cells can only take so much radiation before they stop holding together and lesions form.
So, Lucky me 🙂 I get to maybe miss all that. I’m guessing it’s because the cells are so widespread and there is no direct tumor to radiate that they are going to wait and see.
oncologist today at 3:00. Really have no idea what is in store for me there. It’s all kind of hurry up and rush to get there, but really don’t know why you’re there at all. I will find out today though. I have my list of questions ready. I know what drugs I’m getting, I’ve done my homework. I’m ready for this. Did put a shout out to my LE friends for cards, letters, things to read, funnies. Anything to pass the time. Same goes for here. I need all the cheer I can get. I’ve got my journal ready and everything will get printed and put in. That way I can read and re-read while I sit.
On a lighter note, I did get torch time yesterday. I just excused myself and went downstairs and fired up. Made some really pretty vessels. I think I’m going to fire up again. Mom’s still sleeping and Joe’s at work. I’m finding that vessels are a great way to use up single rods of glass. Not enough to make a set, make a big ole’ hollow vessel.
Hollow lampwork vessel.
Think of me today at 3:00. Send a flash of white light.
Stage 4 non-small cell adenocarcinoma.
Looks so mundane doesn’t it.
Stage 4 non-small cell adenocarcinoma. It has affected the lymph nodes in the neck and in front of the lung. So far, other than the one removed, there are no tumors. Which means I acted fast enough. But, its stage 4 so it really may not matter.
So, the ride begins again. Told you all this would be fast and furious. This morning I”m off for an M.R.I. We need to see if there are any tumors in my brain that somehow passed notice on all the other tests.
Monday morning we see the Radiation oncologist to start radiation. I had this guy last time and while I personally can’t stand certain things about him (he matches his ties and his socks. He reminds me a lot of the character Rene Auberjonois (Clayton Runnymede Endicott III) played on Benson.) he is the best around. I’m praying that I have a voice left when this is done. The last time they radiated my throat it hurt so much. Just thinking about how badly it felt makes me sad now, cause I have to do it again.
Then on Tuesday, Chemotherapy begins. All new drugs this round. This time our cocktail will consist of equal parts Alimta and Carboplatin. These new drugs are supposed to allow me to keep my hair this time (Yippee!!) and to not be so nauseated most of the time. But it is still a poison and will still be injected into me, and that scares me.
I’m glad the weather is starting to break and I’ll be able to be outside more. I can’t wait to open the pool. Mothers day can’t come fast enough for me.
I’m off to find my “big girl panties”, put them on, and deal with this. (Jeeze, I don’t wanna call my mother) .
Have a great day all, Blessed Be.
If there is a level of fear below scared shitless, I’m there.
Apparently when the surgeon found a “really promising” gland and cut into my neck, there was a tumor attached to the gland. Really not a good sign for someone with a cancer history. She was able to remove it and send it in for tests, but I have to wait till Wednesday for results. Then on Thursday I see the oncologist to find out what kind, what stage, where it’s at…. So, pins and needles till then.
The good news is that I’m sporting another rockin’ star on my neck that is about an inch long. Right in front, above the collarbone. I get to scare little children for another year till it starts to fade. Yeah, yeah, quit bitching about a little scar, others have it worse than you. I allow myself to vent once, play the pity party for 10 minutes then I pull up my big girl pants and get on with it.
Joe did agree to let me go ahead and get another tatoo. I just need to find a local artist who does amazing dragons. I have always had an affinity with dragons, and have felt many times to be protected by them. I have had the same dragon in every car I’ve owned. He’s been with me for 30 years and he watches out for me. So, I’m getting a dragon on my left front thigh. I have a tremendous urge to get it done quickly. I’ve been dreaming of a dragon for the past several nights, so I know what I want it to look like. Lots of reds and yellows and orange, really scaly and fierce. Lots of fire and teeth. I need a fighter.
OK, I’m off to bed. I think I’ll take a pain med and zone. Night all.