Check in with doc

Went in for some afternoon labs today. We got an afternoon appointment, because it was just labs and a quick check in with my onc- since I'm not on chemo at the moment. I was quite happy to notice a little pep in my step as I was sitting down in a chair. A chair on the edge of the first bay, like I was ready to do a mad dash out of there. Which I was- for a moment. I don't know if it was because I wasn't getting chemo, or it wasn't 10am, or most likely- the chemo is finding it's way out of me again. Whatever, it was better and I carried on for awhile with the lady I plopped down next to.

She was on her fifth round, so she is pretty new still. Nice lady, easy to talk to and full of spunk. Plus, Nurse J headed over to take care of me today- you can't be sad around her! We were all caring on about how good we felt, and how we just wished it could be the same for everyone else. About that time, I realised the elder woman across the way was not doing so hot. First I feel like crap because I have been just carrying on and maybe not being so considerate of someone else, and then just helpless because I just couldn't see how to make her feel better.

The moment passed and she was shuffling around a bit in her chair, so I asked her if her ears were cold and she needed a hat. Poor thing already had on a jacket and 2 blankets. She was good without a hat, but she did allow me to come put her recliner back in an upright position for her. She was feeling much better now, and so I moved to a closer chair so I could hear her better. We talked for awhile while she finished up and I waited for my doc. She started shuffling again, and I went over and she let me get her shoes and slip them on her feet. She even let me take a couple of her juice cups and get them out of the way. Lots of times people don't need help, and it made my day that there was something I could do for her, even if it was so little. I believe she said that she had pancreatic cancer, and they had just buried her husband the week before. So strong, and so spirited. It made me tear for a moment, as I realised that this dreaded disease will probably take this lady out. There was no mention of it, just a little bit of her story. I had already seen her daughter come in and check on her, and leave again. I believe that her daughter has got her hands as about full as they get, from what her mom had shared with me. I got comfy in my chair for awhile longer, as I knew that I  wasn't leaving the chemo ward until I got in the elevator with this woman and her daughter.

That is exactly what happened. We chatted, and next thing we knew- her bag was empty. Her daughter couldn't have timed it any better by the time she arrived. My doc had already came and talked to me by this time, so off we went. I walked out and made sure that they got all settled in their van, before I made my way to my truck. It has been awhile since I have left chemo feeling so fulfilled. I love to visit in chemo, but most times I am chomping at the bit to get out of there after several hours. However on days when I am just in and out of the center- I do take my time and chat my way back out. It has been awhile since I sat with somebody, just to keep them company while waiting for their rides. I could tell that this lady really appreciated it, and so did her daughter. It made for a really nice afternoon.

Oh, you want to know what the doc said do you? Alright, I'll tell! Labs all looked good, and he gave me a report from last weeks labs, as we did run some different things. Vit D level looks good, and not to quit my D supplements. He ran test and I am definitely post menopausal (chemo induced). We knew this already, but now there is no second guessing. He did talk to the doctor in Billings, and between the 2 of them- they just really don't see the need for a second biopsy. He did agree with her that yes indeed, the
CMF regiment would be good to try. I'm not sure why we haven't done this one already- other then I think it might be a pretty old school drug that still has good success rates. I get the idea that normally a CMF treatment is done much earlier in the game then this. My Onc says it's not that hard of a chemo. I am game, as once again this regiment has it's own battle program that sounds different then the others. My Onc is still waiting for her notes to get sent over, so I'm not sure if I am expecting any more new ideas from the Billings Onc. However, I think Doc and I had another feel good visit today, so yay! Oh and, when I asked what would be reasonable to expect from the current hormone therapy- what I got was this. We can hope for shrinkage, but I don't think we should hold our breath. What we can hope for is no more growth, for it to at least hold steady for awhile while I take a break from chemo.

Oh and, the funny guy- said my tumor markers look, "normal" as his parting shot. I think he was happy that I laughed, and said I understood. Understood meant- he knew I was going to look at him asking what is "normal". Yes, I did refrain on purpose, as he was almost free of me. However, I might have a slightly better understanding of normal then he might think I do. Nah, probably not. My understanding is that tumor markers are based on individual levels of something in out blood. Meaning each person's markers are unique to their own system. Since that was the first reading, there will be nothing to compare it to, until today's labs were drawn. I know that wasn't everything that his look entailed, but I think I finally have an understanding of this much.

OK, enough for now. I'm happy to have gotten you all a timely update for once! Take care, and keep on keepin' on folks!

Lame, lame, lame

OK, I guess I am back to writing for myself now. I have an ex husband that feels the need to follow me via my blog, so I don't want to write anything that will fire up a nasty phone call. Somebody has taken it upon their self to tell my 93 year old grandmother that I smoke marijuana. Somebody's feelings are hurt because I hiked the M, 3 days after not feeling well enough to go to attend family member's wedding? I understand that I am about the only person who understands how chemo works for me, but you would think that people would be happy that I felt strong enough to climb the M. I just don't get it.

I am a big girl, and trust me- I pay VERY close attention to who I choose to share what with, and where I do this. If I have posted something, it is because I have thought it through, and believe that it has value to those I am sharing it with. Through out my journey in life, I have wanted nothing more then to share my story- in the hopes to make a difference in just 1 person's life. Not for my choices, and my experiences to be held over my head at a much later date in time. I have always struggled to please everyone else for most of my life. Guess what? Done now! This is my time, and my choice to finish out living my life the way I see fit, period. Unfortunately I am getting the feeling that in order to do so, I am going to hurt somebody's feelings for closing them out. When I quit writing, or hiding my feelings to the public, everyone will pay the price. I am very tired of sounding like a broken record. I have a lot of people that do seem to care what is going, that want to know the real story. I don't have it in me to repeat what is going on with me, and this is why it goes in a blog. I ask people, "Please read the blog, then ask me questions." I guess now, my blogger blog is now private, so I can control exactly who is reading it. Which means that I will now have no readers, as I'm not going to send out invitations. It defeats the whole purpose of my blog, which was to have complete strangers read my blog- and now they can't.

I keep my really personal blog postings on my blog, and not on my facebook blog. This will not change. However, the way I use Facebook may change. I thought that FB was a great way to keep in touch with people and family. It sounds like this is not that case after all, as my family doesn't really communicate with me via FB. It feels more like I am trying to communicate, and my family just watches every now and again and gets on my case later on down the road about something that I have posted. I don't really have the patience for FB 80zillion different settings, with share this but not that with him, but not her. So I guess this now means that I better like these settings, or clean up my friends list.

I guess what is most lame about the situation, is no matter how hard you try to live the best life that you can for yourself- there is always going to be somebody else out there that feels the need to rain on your parade.

Dreams

I love this. This is something I have always known. Dreams are what kept me alive when I was a little kid and things were really messed up. Dreams are what have  always kept me one foot in front of the other. Dreams got me off meth all those years ago. Hell, dreams kept me going a bit longer when I knew my marraige had serious issues out the gate. Dreams are now still keeping me hanging on. Now the frustrating part is how to make those dreams come true, when it feels that my life might be a bit shorter then the 90 years old on the front porch that I have always envisioned.

On the other hand, this is so contradictory from my newest mantra- which is just let it be, just worry about today. Live for today and dream big-  a little bit confusing maybe?

My visit to the Billings Clinic Cancer Center

OK folks, here we go. My apologies for torturing you all, it has just been a really exhausting couple of weeks between sudden yard sale and the trip. I am feeling a bit more lively and clear headed today.

So my roomie and I made a 5.5 hour trip each way to go to Billings Clinic Cancer Center on Tuesday. They have a beautiful new cancer center that was just added onto the clinic. I believe it just opened in August.

First impression of doctor, why is it this one didn't appear to have opened my huge file before she walked in the door either? I don't get this, and this is not the first time I have felt this. However the last person to do this did take great care of me I thought. The look on M's and I's face was priceless I'm sure, when she asked, "What is it you are wanting me to do for you?"

So the good news is what I was hoping for, she saw that all my treatment thus far looked appropriate. She does think that the Faslodex (hormonal therapy) is worth a crud though. I will take it for now, seeing how it's too late to take the shot back. As long as I can handle it, something must be better then nothing at the rate this baby is growing. For now meaning until we figure out the next best step.

So now my next step is, I scheduled an office visit with my Onc to talk about this. (The doc I saw in Billings is new to the clinic, but not new to oncology. She came from the east coast. Actually, what she said was, if she could get me to NY, she would recommend that I go see a particular doctor At Cornell-NY Hospital that she knew that had some great results with the regiments that she works.) I am going to request another biopsy done on my lemon on my chest. Apparently tumors have been known to change their expression. Meaning I am my cancer feeds off the estrogen that my body produces. This could have changed up to progesterone positive, but H says that is rare. If it did change up, that means that opens up a lot more drugs that have possibilities.

Another option to discuss, is if I am still releasing high amounts estrogen. I'm still a little shaky on some of this info, so  I might be a little off. My understanding is if your estrogen is really high, they can do a Oophoroectomy. This is when they poke to holes in your belly and pull out your ovaries. As far as I can tell, I have no use for my ovaries. The odds of me ever having children now are about 99.9% chance not going to happen- by choice, and thanks to chemo. Some people are afraid of what this will do to their moods. Me- I worry very much that my head is on straight. I am willing to take a chance and lose my ovaries if this becomes a viable option. That sounds better then the moods that the chemo and cancer not going away is doing to me! I now it is estrogen fueling this, but no one has ever talked to me about how high they are. In my mind it makes sense. This stuff is growing very fast, so maybe I do produce very high levels estrogen. I'm not positive, but I think I read that stress alone will do that. So it stands to reason that this may be the case. My stress is still there, just the cause is shifting. It is getting better, and I keep plugging away trying to make the necessary changes to get rid of it. It just takes time and is still a work in progress.

Let's see- she likes tumor markers, which my Onc does not use. I am going to ask him if we can use tumor markers additionally. For his purposes, it may not be a big deal. For my purposes I would like him to use markers. Except for my purposes, theoretically I should not be on any other treatment because how would we if it was my doctor's regiment, or my regiment that was making the difference.

Additionally, she recommended getting tested to make sure I am post-menopausal instead of basing it on not bleeding for a year. She said to check my Vitamin D level also. I got lost there, as I don't now if this shows in my labs, or what the correct level is. Other then that, she did name a couple of chemos regiments that we have not done, that she thinks are still effective, even though they are old-school. These are Doxil (Liposomal adriamycin?) and CMF (cytoxan methotrexate).

Ok great- so what does all this mean you ask? I don't know, but it is bad shit period. We have got to get this under control! My left shoulder is starting to hurt a little, most likely due to all the stuff growing on my chest, under collar bone, and up my neck. Lortab 5 still takes care of it, but I don't like taking all the addictive pills. I'm going to beat this, but I don't want to be an addict by the time it is all over. The part that really is starting to bother me, is how many different kinds of chemo we have tried. This doctor is as bothered as everyone else seems to be regarding the effectiveness of the Docetaxol, and how it made it grow so fast. If we don't get a grip on this and keep trying chemo, eventually the chemo will kill me. I am lucky my system is still strong, but it is taking a toll even if it is not so obvious.

My mind still goes back to cannabis as a solution. Maybe it doesn't work for all, but I just have a hard time believing that all these people believe in something that doesn't work. I have also just recently been told that the effectiveness off cannabis oil has the tendency to diminish with the more chemo one undergoes. The other thing that really makes sense to me, and I can't figure out how to make it happen is my diet of course. Once again this doc recommended a raw and organic diet as much as possible. These two solutions make me just want to ball up in a flippin' corner and cry! I just can't see that either of these solutions are in my reach, due to finances. The diet being the cheaper of the two, but harder to accomplish probably. Tastes good and affordable has been my diet still. I haven't felt like cooking much. Oh, to have my own healthy private chef! Which is not going to happen. I wonder what would happen if I could get my head a little more clear and focused, came off of chemo and start getting to feel more energetic, and focus on a cannabis oil and diet regiment. I can't stop myself from thinking that this may sound like a better option then more chemo by this point in the game. It's not going to hurt me. The chemo will eventually take me out if it doesn't fix it.

So that's where we are at folks. I wish it was better news, but at least it is not worse. It is still as bad as I thought that it was. I think I am hungry for tacos again. Why tacos? I can't get rid of my taco craving. Taco Bell is not real tacos, but it solves the craving fast!

Companionship

Well, here I am. Honestly, a bit of a basket case right now, as it has been a really has been a crazy 3 years. I think this is what worries me most about dating, as I just don't have it in me for the BS and games that can come with dating. I want peace, calm, and to feel loved and protected. I want to have fun, cook & share a bottle a bottle of wine with someone in front of the funnies, someone to to come with when Hope and I walk, to crank the jams with, or see a show with, jump in the truck and go for a drive, take a ride with. I'm just in kind of a weird place, as I have just been keeping so close to home. Healing from somethings and battling others. Just someone to hang out with will be a huge improvement for the battle attitude I think. Getting lonely and depressed will surely do nothing but harm. I know I am loved, and have a lot of friends all over the place, but it's just not the same as a bit more intimate relationship.

I find it interesting (and it makes me happy) that that is really my biggest concern when it comes to dating. I'm really not too worried about being lopsided, and not too terribly concerned about how I look- I clean up when I want to! I'm still me regardless, and I always hope my beauty radiates from the inside out anyways. I'm not worried about dying on someone either. That's for someone else to decide for themselves pretty much- if they can deal with the possibility. I do believe it is still better to have loved then not! At it's worst, love can be hideous, but at it's best- there is nothing better. Good companionship would really make me smile right now!