Charmine's Hope

Did my Onc really just say that????

2012-01-03T19:07:00.000-08:00

This is all I got today. First- How do fix my blog? I don't have the patience to delete this one, and try and find another blog site and transfer it all over. My blog doesn't seem to work right anymore, because I am not using Google Chrome? Really? I disabled my IE, and downloaded Google Chrome, and I HATE it. Google Chrome is fast...but very boring. In all reality- it is slow because I spend all day trying to find what I am looking for, or figure out how to make it do something. I can't even insert a curser in my blog post...I have to backspace to delete an error, ughhh! Can any of my millions of readers suggest a solution to the new blogger/blogspot changes? Please, I want to keep my blog, but just don't have it in me to redo the whole thing.

Plus, you see- I just don't have time! K, I'll spit out what he said, but then I'm done for the night. I need to not focus on it for the night. I had a witness today- I am hearing him right. I asked him how long again, only from the aspect of I have got to get my crud together, and suddenly I have been feeling like it's less then a year. Well, I guess it has been several months by now since he told me a year. He is still very hopeful of course with the Feamara, but realistically- I think he is about as optimistic as I am. He says it is time to get close to my support system. He doesn't think directing all my energies into purchasing a trailer is not necessarily the best use of my time. There is a study in Seattle that might do some good, but I don't believe he thinks that it is worth the efforts for me to focus on getting there. If I lived there, and my main support system was there, and it was convenient for me to participate- he might look at it differently. However when he looks at the whole big picture of the situation, he doesn't think it's worth the effort.

Crap, I just don't even care that much anymore that the end may be near. I just don't want to be without my dog, and I want it to be peaceful and happy. My needs, and some of my wants met. I hate it that I don't know how to get there. How can nobody else know the answer? I just don't understand. All I know is I'm not giving up my Hope until it's time. I think it is time to be in WA. If there is any hope, maybe it is with a dr in WA. That, and I have decided that I want my baby sister to take care of me. I no longer have a husband that appears capable of getting it together to get me through this, and my parents aren't interested in welcoming my dog. Baby sister, I am so sorry to have to put this load on you, but I know that you are capable and willing. Who would of thought that we had to get you through nursing school in time to take care of your big sis?

UGHHHH- what you see is what you get. I can't even scroll up to proof read!

A winter day walk

2011-12-15T22:22:00.000-08:00

I had to go in for labs today, to check my Coumadine levels. Nothing too exciting there, now I am a bit too thin, so another new pill routine. I sat in the office with him today for some reason. I double checked to make sure I understood the pain pill routine, which I did. Except now I have the mixing pill thing down. I can mix any of my pills, just might want to be prepared to take a nap is all. No damage to my liver or organs for mixing them, whew. He got out his calipers, and the mass is the same. This is good, only for me. For me, no change is better then growth. He also measured one of my lymph nodes on my neck for the first time. He thinks that he better watch that. We talked about taking another dose of my current CMF, for the sake of it is holding steady at the moment. I'm not convinced he has any other option.

Did I really just have to say that? That sucks, but I did. We talked about it again. He hasn't really seen any other cases like mine where it is so resilient as mine, was my understanding when I asked. He is pretty much out of ideas I think. There might be some old ball study that he can't get me on for some reason. How can this be? I mostly feel pretty damn healthy, so how can this be? And I don't even know what to do about it, just like my Onc. What the hell do I do, somebody please tell me!

On a lighter note, Hope was in the truck waiting for me as usual. I decided that we should go for a walk by the river and come back through downtown. Look at my sweet girl, I am so blessed with her love every day! Here she is patiently waiting for mom to medicate before we go for our walk.

And now we have made it out of the car. It's snowing out a little bit, but not too terribly cold. I had my huge hooded leather jacket on, and treat bag at my waist. We aren't walking on a prong collar today either. I put my support band on Hope's leash for Clint Miller. He passed on a couple days ago after a furious battle with testicular cancer.

Off we went. We walked down by the river just west of Caras Park.

This looks like a pretty nice resting spot by the river on the fence line. So there I left Clint's band. I hope not to see you too soon, but save me a place at your table please!

So that was my day. I loved my walk with Hope, it was a good day. I feel good, and I got some things accomplished. Goodnight all!

Coming up for air

2011-12-13T22:56:00.000-08:00

Whew, Hi all! Boy am I glad to see you! I got a little lost there for a few weeks- some by choice, and some not. I did have to take a time out and rethink a few things in private. My head got a little screwy there for a few.

Last I wrote, I had my first dose of CMF in me. Not bad at all really. Tiny bit of mouth sores, and my blood counts don't look too shabby. The worst of it has been my appetite. Food hasn't been on the top of my priority list, and food money has gotten super tight, which really doesn't help the cause. Figures, as the only thing that has really sounded good for the last 2 months is Taco Bell hard shell tacos. Why? I hate Taco Bell- that's not real Mexican food! Check this though- I still have all my hair. The "C" part of the treatment should make it fall out. I think I am a month in, with 2 treatments under my belt...and no sign of hair falling out. I put on makeup last week, and was quite shocked to find such a lush set of lashes to put mascara on. It was a pleasant surprise.

I don't remember much of the beginning of the month. I had a pretty rough week that the highlight was hallucinating before I finally started getting better. I woke up 2 Mondays ago with what felt like a ginormous side ache. The Lortabs, nor the 2mg Dilaudids made it go away. Oh yes, and at this point in time- I did NOT know that one should not take Dilaudid and Lortabs together :) I haven't had a lot of pain medication instruction, as I just haven't needed much up till about now.

I made a doctor's appointment after about 4 hours of this pain. Doc had the nurses run labs and he came in to tell me that he was a little concerned that this was symptoms of a really low blood count. Which he thought might need to result in an over night hospital stay. Which made me kick and scream because I felt fine of course, other then the pain. Lucky for me, I was right again. My counts were not low. So my Onc now says the next thing is a CT, because the next guess is a blood clot. He gave me a blood thinning shot before I went over for the CT, as this is how sure he was. This is what the CT showed, a chemo induced blood clot on my left lung. Lovely. So he sent me home with Coumadine, and some shots. He asked me how my pain meds were, and I didn't know any better, so I told them they were fine. I guess I was just thinking I had enough to last until I saw him next. I was already loopy and somehow it just never came up what I was taking.

So home I went. I had 1 functioning brain cell left that told me I should start writing down when and what I am taking for pain. Haha, I absolutely can't make heads or tails out of my notes now. I'm pretty sure that first Monday I took 2 Lortabs at 8:30, and still in pain an hour later. So I took 2 Dilaudids at 9:30. For some reason I had it stuck in my head that Dilaudid starts acting in about 10 minutes. Why? I don't know, except I'm guessing I was not told this. By 10 pm, I am still in a lot of pain. I had already called the on-call Onc. What I understood her say was either deal with what I have for pain meds, or I can go to the ER to go on an IV. I'm not sure what this was based on, unless it was based on how strong Dilaudids are. Anyway, by 10pm I asked my roomie to run me into the hospital. I did not want to be admitted, but the pain was that bad. I basically ended up spending almost 2 hours in there explaining what had transpired during the day. They didn't seem to know what to do either, other then they seemed to think that maybe I have built up a tolerance to pain meds. I left with a little bit better instruction. First, don't take both the pills together. Then, make sure I am taking it often enough. OK then. All I know is I am feeling stupid about now.

So home we went. I decided that the next best solution was propping myself up in bed with a big tv pillow. This works like a hospital bed, and took the pressure off of my side. Next thing is to set my alarm for every 3 hours. So I spent the next 4 days in bed, taking 4mg of Dilaudid every 3 hours. I still had to call my Onc again on Tuesday, because the pain was still so bad. The gist I got was that it is going to hurt until the clot dissolves pretty much. I knew at this point that sleeping my way through this was probably the best solution. So I did the best I could to do this. I was really whacked out by Friday. I think the nurse had to warn my not regular Onc that I was pretty loopy when he came in to check my labs. Somewhere along the way I drove myself to run errands, and got pulled over. I think he didn't want to deal with me, and he sent me home without a ticket. Somewhere along the way, either before or after this- I started hallucinating at home. It was bad. The thinner medicine must have worked though, as I started feeling better, and taking less pain meds over the weekend. Thankfully! That was a pretty scary mess, that I just didn't really realize. I do have a high pain threshold maybe, and this has made me realise that I need to be aware of this.

By the time I rolled back in to see him the next Monday, I was MUCH better. And feeling much relieved to have a functioning brain left. We talked briefly about the pain meds. I don't know exactly what he asked me, but from my answer- he decided that it was probably time for some slow release pain meds that I take on schedule every day. I haven't liked this idea out the gate, and I have been afraid of this day coming. To me, it is just not a good sign of things to come. Plus, if I can ever beat this devil, I don't want to walk away with a pain pill addiction.

I agreed to go on some. I am a little bit bitchy about it, but I will get over it. It's just giving me a little bit of a mental beating, but it is growing on me. He put me on a slow release 30mg of morphine. I don't know much about pain pills, but I'm thinking that this is heavy duty pain killers. The part that is really freaking me out is this. To me it seems like when you take pain meds that you don't need, that it makes you high and loopy. My experience with taking them when you need them, well it seems like you feel pretty normal when you need them. This is what is bothering me...I feel pretty clearheaded and coherent, and I know I sound like this too. I feel like I didn't know that I needed them. I still have some pain in my shoulder, (which is the reason for the Dilaudid), but 1 Lortab then seems to fix the problem. I will get over it and used to it I guess.

Something tells me that I think it might be covering up some of the pain in my neck. Pain that is newer due to the growth of all my lymph nodes. Onc says that he doesn't think my mass has shrunk last Monday, but nor has it grown. It might not be growing much, but I just don't think I can say the same about my lymph nodes. Every time I feel them up, they just seem like there is more, and or bigger. I gave him the 2 treatments like I said would. We'll see what it looks like in a couple more weeks before we make another decision.

So there you all are, all updated. I so wish I had some better news for you, other then my chin is still up and I feel soooooo much better then last week. I will leave you with a picture of my new bangles from a friend. They are Cookie Lee, and I just love them! I have never seen any like these.

8 or bust

2011-11-17T13:29:00.000-08:00

I'm on my 8th different chemo regiment I think. If not, I have lost count. How many doesn't really matter except for 2 things....none of them appear to be working, and I am losing hope after all of these. There, I said it. I just started an old school therapy called CMF on Monday.

I was pretty straight up with my doctor. This was truly the first time I walked in thinking that it was just a waste of time and my energy. I am losing faith that chemo is the answer. Is there something else out there that will get the job done? I don't know. If there is, it doesn't really feel within my reach. My doc doesn't know, and I don't have the energy to search it alone because it makes my head all crazy and scrambled. All of this makes my head crazy and scrambled. I don't want to sound like the crazy desparate lady! I feel pretty alone on the crazy lady boat. The only solution that anybody seems to know is to cut it out, and my doc doesn't think it's a grand idea, so I'm with my doctor on this one.

It is not looking good for the home team. This cancer is aggressive and still moving forward. Just for it to slow down and let me catch my breath and my sanity for awhile would be a really good thing. I asked my doctor a question , rather TOLD him what was going on in my head. I was so hoping he would tell me to calm down, get a grip and you are getting a little bit ahead of yourself. He couldn't do it. In fact, he couldn't disagree with my statement at all. My thought was pretty much that I probably don't have a lot of time left. As fast as this thing has proven itself to move- if I was to quit going in for chemo, I probably have about a year left before it takes me out. My Onc said he couldn't tell me any different. I promised him that I would try a couple of doses of CMF before I call it quits. So onward and forward- I haven't quit yet, and I haven't been sent home yet. I just pray for the strength to stay sane, and to not make my loved ones feel like shit because I am losing it.

I am also getting to the point where I feel my honesty starting to falter. I don't want to worry anyone, and I don't want people to feel sorry for me. I also need to not turn into a cranky old woman who says whatever she feels without any regard to how someone else might feel. This is not how I want to be remembered. I go back and forth. I can't ever decide how much info is too much info on Facebook. Disappearing sounds pretty good, but it also feels like dying...and that doesn't feel good.

Juicing

2011-11-10T21:07:00.000-08:00

K, I have stuck with it so far- at least 1 juice a day. I am graduating to 2. I have a cooler full of produce in the garage, to keep it out of the 9 year old smoothie maker's hands...and perhaps to leave some room in the fridge for others too.

I am sticking with my apple, spinach, carrot mixture in the morning. I drank my Kirkland Weight loss shake afterwards for protein, ooh and 4 grams of fiber. Yesterday evening I jumped right in, head first I think. In went about a cup of broccoli, a tomato, 3 celery sticks, a garlic clove, and a medium size habenero. I tried to sip it while I wash washing up. It was strong and potent. I also think it separates and you may have better luck stirring. It was hot in my mouth, but not that bad.....it was when it hit my stomach was the problem. It hit like a rock, and no warning to keep it down. It was short lived, and not very painful and pretty much all that I puked up

I am gluten, went back for more this evening. I hear how important habenero is and garlic too! Tonight was the smallest habenero in my bag, a garlic clove, tomato, 2 celery sticks and 3 leaves of kale. I sipped it slowly, and made sure it didn't settle too bad. It took me as long to sip as it took to clean up. It was defiantly not as hot. The smaller habenoro might have been enough. Not letting it settle makes sense. In my mind, I think something that looks like it might be a more solid juice, maybe soaks up some of the heat a little better too? I don't know, but it is in my stomach still!

No chemo vacation

2011-11-08T18:38:00.000-08:00

So much for a chemo vacation, dang it. I knew I jinxed it by suggesting that I might have 2 months off still. I was pretty sure that the lemon on my chest is turning into a new boob. I just didn't really think onc would take me off the hormone therapy so fast. This is really worrisome. I didn't realize that my onc is watching my lump so closely. I know he is, just not close enough to see it through my shirt. He walked in and asked about it, and motioned like he could see the growth through my shirt. I knew it seemed bigger, but his question should have prepared me. 2 cm bigger in just about a month. So I didn't get a shot today, and back onto chemo. He gave me until Monday. He also did not seem inclined to want to let me slide any past Monday either. I think I get the CMF on Monday, but I can't remember for sure. We are still on track with the female doctor in Billings. He did get a hard copy of her notes finally, and he said Mischelle and I did pretty good at remembering everything she said. Nice, we rock!
So onward and forward. Got my flu shot combo H1N1 shot today. I will call the dentist and see if I can get a short notice teeth cleaning done. Probably not. And we will see if my girl Brandy has something ready for me. I think she is working an an Ankh for my ankle.

My first juicing experience

2011-11-06T13:28:00.000-08:00

There you have it! I got out of bed, fed Hope and got busy. While I was at Costco yesterday, I picked up a flat of organic apples, a Costco size bag of organic carrots, and a box of organic baby spinach. As you can see from the photo, a Juiceman Juicer arrived from my pink ladies on the east coast.

I was quite pleased to find that I felt like I had enough ingredients to give it a whirl. What does that mean in hind site? I have no clue, just how my head works sometimes! I was also pleased that even though leafy greens are not supposed to do well in this type of juicer, (a centrifugal juicer), my spinach seemed to do just fine. So this morning I put in 3 lg. carrots, the oldest apple in my fruit drawer, and about a cup of spinach. I think this produced about 16 oz. of juice.

For all you doubters out there, I will be the first to admit to not being very fond of fruit (too sweet), and not fond of a lot of veggies, least not cooked. All I know is that this tasted good! Not so good that I see myself craving it- least not for any other reason then I know it's good for me, but good. I started saying it didn't taste bad, and then I realized that bad really had know place in the description of this combination. All honesty really. In fact, there was only really 2 things that I disliked about the experience. 1- Not fast enough! Not the juicing part...the clean up. I think that NOT cleaning the juicer right away after is juicing is probably not good for the life of the juicer. Getting into a habit with this machine is important I think. I suppose it would probably be fine to leave it soaking in a bowl of water for a few hours, until I could get back to clean it right. I good little brush will go a long ways with the blade type piece. On a normal day though, wash it right away as I am SIPPING my juice. Book says sip, not gulp...especially with veggies. Veggie juice is stronger. The other part that sucks- I discovered it doesn't seem to count for food in my stomach before I take my vitamins. I used to be able to take them without food, but not since cancer. So is it the veggie juice being so strong that made it react hard with vitamins....or just not thick enough to coat my stomach? Hmmm, I'll have to try it differently on a different day. All I know is I did it.....now I just need to figure out an affordable routine, and how to max the benefits. I know they say as much of a raw diet as possible for fighting cancer, but I still don't see getting rid of all the good stuff completely yet. Let me start with adding first and taking away some. Baby steps!

Inspirations

2011-11-05T21:06:00.000-07:00

May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism. ~Unknown

This is the only answer I have for my battle. There is not much bravery involved- brave is for rescueing people out of burning buildings. I just keep putting one foot in front of the other because I love life, and this is all I know to do.

OK, and now this makes me want to open my blog again, of course. So much easier to post a picture then really follow this thought sometimes. For being you. Choosing to surround yourself with people who will allow such a thought, now there is a big step to the goal.

Happy birthday to Hope! 10/30/11

2011-11-05T20:37:00.000-07:00

On Blue Mountain, facing the north-east towards downtown Missoula

Hope's birthday walk on Blue Mountain.

The nice man who took our picture also commented on what a long leash I had. When I said it was our training leash, he said "Wind River purple?" Just like Carrie said would happen!

Check in with doc

2011-10-24T21:25:00.000-07:00

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

2011-10-22T15:39:00.000-07:00

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

2011-10-14T11:39:00.000-07:00

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

2011-10-13T15:31:00.000-07:00

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

2011-10-13T00:29:00.001-07:00

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!

A most beautiful thing

2011-09-19T13:27:00.000-07:00

A most beautiful thing is to watch a man so gently, so carefully walk his elderly, bald and sick wife into the bathroom. Right by her side so tenderly. You know that he is by her side through thick and thin, and until the end. Now that is how love is supposed to be!

In the chemo chair for dose #2 of CDX-011

2011-09-19T12:10:00.000-07:00

Hi all! Haven't been feeling very positive for a couple of days, and I'm not going to hide it today. Here's to hoping my Oncologist can help me put it in a better perspective when he visits me in a minute. However, I am not holding my breath. Hopefully I don't irritate him, but I already feel like I'm going to.

What am I feeling this moment in time? I am feeling alone, scared and tired. A little bit pissed off at my loved ones. Let me try and break it down here. I am feeling alone, and the alone and pissed off is getting all jumbled together. I know I'm not alone, yet I am so very alone in this. Ultimately it is up to me to deal with this. I have no right to be pissed off at the people who care about me. They are doing the best that they can, and that is all I should expect, and I have to accept this. No one around me knows how to make this any easier, and I can't tell them. I know what I think that I would do, but that is up to someone else to figure out. I've told my loved ones what I think I need, but I can't make them do any different. I'm tired of feeling like shit because I feel like I am pushing others to do something that they aren't ready to do. Tired of asking, hinting, complaining and whining. Bottom line is it is up to me to take care of me. There is no one else.

The bad part about it all is the thoughts are creeping in to not do chemo anymore. Hold up for a second- not saying I'm quitting...but the thoughts are there. I don't want to spend the rest of my life in this turmoil. If it is going to be such a battle the rest of the way...what's the point? I'd like to think that someday I will have money in my pockets so I can take my room mate and her family out to dinner to say thank you. Or to throw a little get together for my pink ladies and my family to say thank you and I love you. To be able to just go out and eat something really yummy without fighting with myself over the other bill that I am neglecting. Hell, I'd be happy with just an extra $200 bucks a month. That would give me so much breathing room! I want to go dig for black opals in Nevada. I want to go sit and talk with my grandma face to face. Right now, I want to load my Hope in the truck and just drive and drive and drive and drive away from cancer. Except it doesn't really work that way...plus I think the farthest I have enough gas for is Billings or maybe the coast.

I am still fighting, but I am getting really scared. I now hate that I can feel my mass and lymph nodes. I used to like it because then I would know when they were shrinking. They aren't shrinking, and I know this. I can hope that the ones I can't feel are shrinking, but I doubt it. I just want peace and little worry for the remainder of my life. Doesn't seem so much to ask, but I know it is. My life has rarely ever been been truly peaceful and stress free. I am trying so hard to remain resilient and positive, but it is getting harder. It's hard on my physically, but not that bad yet. It is the mental stuff that will drive me crazy, but I already knew this. I do feel like if I can just hang on, I can beat it. Hanging on needs to be pleasant though. Why hang on if one is just miserable the whole time...put me out! Quitting and going out and finding a job is starting to sound better and better. At least I could afford my meds that make me not care so much about this fricken disease, and I could afford to eat the things that I enjoy. If chemo is just prolonging my life, I better be enjoying it. If I knew there was a cure a year away, that would be different. I don't know just makes me want to huck my phone against the wall. I don't want to hear I don't know anymore.

I am so blessed with my Hope. I love my family and friends, so please don't take this the wrong way. However, they are part of the I don't know. I need help, and I can't do this alone. However they just don't seem to know what to do. Neither do I, but I still keep doing anyway. I made a promise to my Hope to take care of her for a long time. I will do that. I'm not ready to die and have her go through the stress of a new home and family again. Not if I can help it. I made a promise to take care of her in the best way that I know how. She is my Hope. That meant calling someone that probably really didn't want my phone call and asking for money for her vet bill. Funny, I won't ask for myself, but I will ask for my dog. I will ask total strangers before I will ask my family for help again, or just go without. The way I felt after asking for $8 for hobo spider traps will not happen again.

I am alone by choice- because I left a bad situation that would eventually be the death of me. However, I don't want to be always alone. I do feel as if my close friends don't know this somehow. I guess I am wrong by thinking that maybe people should come visit me. Some people seem to think that it is up to me to come visit them. What isn't understood is that I am very limited on gas money and energy. I run pretty tight circles. This doesn't mean that I don't want company- it means I am broke and not traveling far, and not always feeling so hot. It does not mean that I don't want to visit with you, it means that I don't feel well or have gas to spare. Heck, I am happy for someone to come watch a movie with me, or a surprise visit to chemo. You see what happens when I don't have visits....my mind gos to sad and depressing places when left alone too much. Or pissy places, like I am at the moment. The more I think about this, the more pissy I am getting. I guess I just expect way too much out of people. I know how I THINK I would react, so isn't that just common sense? Isn't that the way we act when a loved one is in trouble? I guess not.

Please, please- if I get better, please let me retain and remember all these things! Please let me get better! I want my positive attitude back- the one where there is no doubt in my head about beating this, please bring it back!

I'm gonna love you through it by Martina McBride

2011-09-15T14:42:00.000-07:00

I'm Gonna Love You Through It Get a case of tissue out for this one! What a beautiful song it is! Such a wonderful inspiration. However, the one thing that stands out above everything else is that I wish my husband got it. I wish that was me with my husband by my side.

A husband's view- I am blessed that he didn't care what I looked like. Just so very sad that he doesn't get that it isn't about him.

Day 1 of CX-011 treatment

2011-08-29T13:05:00.000-07:00

Darn emotional roller coaster strikes again! I was on a great high this week from a week break from treatment and all the fun stuff I have done while off. I woke up ready to take a stab at another type of chemo today. Then I turned on my Facebook to check in. I started seeing posts to a lady that I met when I went to the Lotus Survival Foundation retreat in May. I got to looking and realised that she has entered into hospice.

Even at the time, we knew that she would probably not make it. That is so hard to think that way, and it feels wrong to me. I'd prefer to think that you still have a chance as long as you are alive. I know that it doesn't really work that way. I am still having a battle with reality, even though I consider myself to be a realist. I guess maybe I just didn't expect to hear this news so soon. She looked well, even though it appeared that she was dropping weight. I could tell that she was very tired, but she did her best to keep up with the rest of us. She was still going through chemo a month later, as she messaged me to find out what kind of chemo I was taking, as she had to go choose another chemo. How can she be suddenly going into hospice now? I still don't understand how this all works. Lord, if you must take this beautiful young lady, please let her pass in peace.

The other part of me that is bothered by this is this. If there comes a time when treatment will no longer do me any good, then please let me know early enough to enjoy some life. I dread getting sent home from chemo to die, when I don't have the energy to do fun stuff, and the appetite to eat good food. I will fight as long as I have to, but I hope my doctor understands not to make me wait until the last minute. I want to go see Susan Tedeschi perform an outside show just one time, I want to eat another Pete's Calzone, I want to prepare and eat another prime rib, I want to ride the Going to the Sun Road.....hell this single girl still wants to have sex for that matter! And I don't want to try and cram it all into my last 2 months when I'm not feeling well!

In the meantime, I still have doses to take. We are not out of options yet. H says that she is hoping this new study drug doesn't beat me up so badly as the last. We shall see!

2 years today battling cancer

2011-08-26T15:23:00.000-07:00

And I'm still here! Really, I am...even though I took a little break from posting. I just really needed to calm myself for awhile. Trying to plan too far into the future, too many ideas on how to perfect things, caught up in too much drama still and tired of trying to force things to happen. This is the first day I have really felt like writing in awhile. Of course I want to fill you all in on what's really been going on....but I will get way too tired before I am done.

So the important part I guess is a treatment update, and a mental update. Mentally, I am feeling much better. It still goes up and down of course, and certain people really like to yank my chain. I am getting better about not letting people mess with me so bad. Those people just flat out go on ignore now, until if and when I sense a major change. That's the kind of bad juju that will not allow me to heal. I've got enough on my plate without trying to deal with other people's issues. To be honest, I am also having more depressed thoughts about not being able to beat it then I have in the past. I've been doing this for 2 years, and it is getting old. I can't let my chemo cycles dictate this depression. It happens, but I hate it when I can feel that it is the chemo effects putting me in a tail spin, as then I feel that it is out of control.

I'm getting to this place where I am getting pretty accepting of my life as I know it right now. This spot is where I need to be to heal. I just have to let go of anything that causes me stress. Yard sake, screw the yard sale as I can't do what needs to be done alone. I tried to focus on Charmine's Hope, and start trying to generate some funds via the net and tshirt sales. That was too much. I have been focusing on chemo, riding my harley when I can, visiting friends & family and training Hope. That's it...nothing is more important then that. The last 6 weeks have been a blur, as I probably spent most of 4.5 weeks in bed. Just so tired from the Ixempra. So tired as it made my counts really low. In fact....I don't even want to talk about what is too much anymore. Let's talk about what I CAN do.

So I am celebrating my 2 year battle today. Celebrating sounds odd, but I am still alive and kicking. The activities of the week include- a week break from chemo, hiking the M, and hanging at the water park yesterday. BBQ tonight is next on the list!

I got lucky with a chemo break. The doctor's choice drug on the study I am on did not work. I had a CT after 2 treatments, and my friend the mass appears to be growing still. So on to the study drug. I better make a new chart to track this one again. I should have started on Monday, but my blood counts were too low. As tired as I was, I thought that might be the problem. So we will start CDX-011 on Monday. My clinical research lady thinks this might not be so hard as the last, but I am preparing myself that it might be. Good news is I will have another CT scan after 2 treatments again. Amazing how my energy started coming right back up immediately!

Hiking the "M"-

Mt. Sentinel
Mt. Sentinel is Missoula's mountain and the place to be for Missoula hiking. Marked with a large concrete “M,” it offers the easiest trail access and a moderately strenuous hike right in the heart of Missoula. The views of Missoula Valley can't be beat from the “M” or the summit.

Trailhead: Located right behind the University of Montana's football stadium on Campus Drive. Trailhead is well marked and offers a decent size parking lot.

Distance-3/4 of a mile to the “M” or 1 and 3/4 of a mile to the summit. If you don't want to retrace your steps down the mountain, take the Crazy Canyon Trail into Pattee Canyon or the Hellgate Canyon Trail which links to the Kim Williams Trail taking you back into Missoula.
Average Time of Hike- It takes about 20 minutes to reach the “M” and an hour to reach the summit, one way, depending on your fitness level.
Elevation Gain-620 ft
Difficulty- Due to the steepness of this trail it is mildly strenuous.
Trail Type- Out and back trail with switchbacks.

I'm still in awe that we did it! I never thought I would have the desire to do it. We were actually looking at what we thought was an easier hike, until we were informed differently. Then we thought that we needed a longer hike, and were looking at various different ways to get to the M. By the time it was all said and done, our timing and route was just perfect. Anything else would have been too much...this was hard enough for not being in the greatest shape. Plus, we had Hope and Jess, the 9 year old. We got our view of the sunset on the M. Hope was ready to get off that hill by the time we were there. So ready, she started back down trying to drag me. Jess did great until she accidentally tried to roll down the concrete M. Luckily I was sitting below here and managed to stop her before Hope and I rolled with her! We are so proud of ourselves and are already talking about doing it again....but we were sure glad to be sitting in the truck again.

Then onto Splash yesterday. We were going to tube down the Clark Fork, but it quickly became easier to head to the water park. So much fun round and round on the Lazy River, and a couple trips down the slides with Jess. I have discovered that water makes feet with slight neuropathy feel normal again! I had a little girl float up to me to ask me if I was a boy. When I told her I had cancer, she almost got excited. I think she and her friend must have been talking about it, and she got this look like she guessed right. She must not have quite understood it all, because she had to come back and ask again. Hopefully if she ever has to deal with cancer, she will remember the nice bald lady who was having such a good day at the water park!

Tube train!

So there you have it. The only thing missing at the water park was a new left boob. Man, I would love to wear a "normal" bikini top again!

OK, I did it....finally posted another blog for you. Enough for now. I need to get up and move. Maybe a short putt is in my future today!

Next step, another study!

2011-06-27T14:55:00.000-07:00

OK, so it has spread again...onward, and forward. We are still running with the theory that I am still very healthy and strong. My body is still tolerating chemos well, so let's hit it with all that we have.

My Onc believes that we need to do another study. He did NOT say that he was out of ideas on approved chemos. This is not the case. The reason being is that studies have very small windows of availability. You have to get in while the study is going on. What is going on with a patient makes that window smaller. I as a patient must meet certain criteria.

The criteria for this particular study is 1- must have locally advanced, or metastatic breast cancer- check, 2-must have received between 2 & 7 previous chemo treatments for progressive or recurrent breast cancer-check (I'm at 3), and 3- who's cancer must contain the GPNMG protein- check. Additionally, can't be under 18, pregnant or nursing, nor can one have any residual side effects from prior chemotherapy treatments, including neuropathy (tingling, numbness, and/or pain in your legs, feet, arms or hands) that is bothersome enough to impact your ability to do ordinary daily tasks, as this may increase the risk of serious side effects. Lucky me, doing good still!

So I have signed the paperwork for the new study. Of course my body must still meet the screening phase as well, but we do not foresee a problem there. The jist of this study for CDX-011, by Celldex Therapeutics, Inc. is better then the last study I think. This is a "Crossover study". Once again, I may or may not get the study drug. If I don't get the CDX-011, I will get a "doctor's choice" drug. This means that my Onc will have chosen out of the available choices, what he will give me. There looks like there are up to7 possible choices, out of 10. One of the seven I have already taken, but the clinical research lady thinks that I may be able to take Paclitaxel again. (You can't take most chemos more then once.) Clinical research lady is GUESSING Doc will choose Ixabepilene. The highlight of a crossover study appears to be that if I get the "Doctor's choice" drug, and my tumor quits shrinking, or continues growing- then I will be able to try out the study drug. Pretty cool!

Once again, this study will go on for an undetermined amount of time. The expectation is that I will be in this study between 1.5 years and 2.5 years, which includes follow up monitoring. Actual chemo time depends on how well it works, and how well my body tolerates it. The study drug is administered 1x every 3 weeks. Lots of extra tests and monitoring of course, no matter which drug I get. For today, I am not even going to bother with the side effects, as we really don't know what kind I will end up with. If you really want to know, follow the links I posted.

Today I am grateful for the sunshine, and the shade in which I am sitting in to blog! I am grateful for the love I am surrounded with. I am grateful for my body feeling well, and a home to feel well in. I am grateful for all the people cheering me on!

PET Scan results

2011-06-27T13:17:00.000-07:00

OK, So I got my results last week...Thursday to be exact. I have been in computer hibernation since then. Just not ready to share with the whole world yet. Don't ask me why, because I don't know. Just trying to absorb it all in without feeling like anyone is feeling sorry for me maybe? Oh shit seems to be the general reaction. Mine too. I guess i don't want anybody else to have to think "Oh shit" too?

So here goes. I got settled into my chemo chair to draw labs. I told my nurse I was a little nervous as I was getting PET scan results today. She asked me if I wanted to stay in the chair, or go back to his office to hear. I mumbled something that the chair was fine, he didn't have time for my questions anyways. OK, so I'm a butt hurt ass from last week still. The chair is fine, I guess I didn't really want to be alone in the room with him, as I didn't have anyone with me to hear the results. I guess being in the chemo ward didn't feel so alone to hear what he had to say. Maybe someone else would hear and interpret for me if I needed it.

My Onc came over pretty quick it seemed today. Maybe he was caught up and not so rushed. Maybe he just wanted to get it over with. Maybe he just wanted to let me know, so I could get on with my day outside of the cancer center. In all reality, it was probably just my turn. However, he was much kinder then last time. So he tells me he has positive-negative news. I was hoping for better, but this is about what I thought he would have to say.

Let me start off by explaining that this was a PET scan. So cancer shows as a "hot spot" When the scan gets read, I THINK that it only reads somethings...like the "hot spot" Which is great, this needs to be seen. However, I believe that it doesn't really show a lot in terms of size very accurately. That is what an MRI is for. An MRI takes pictures in slices, and will give an accurate measurement of tumor size. Readers, please help me out here- am I still following along and understanding right?

So the positive first. The positive is that the bad lymph node under my right arm pit is doing good. Good I take to mean as either still showing signs of shrinking, or it is gone away. I'm confused on this, as I can still feel it. Which ever is the case, that was the positive news. The mass on my left chest, and the lymph node under my left collar bone- my Onc considers that one in the same. He says that that is no longer showing signs of shrinkage. He did not say growing again though. This is the part where I was really hoping he would say looked great. Because it feels back to the original size when I first felt it after surgery. Back to the un-understood question...how did THAT get from scar tissue to tumor???? OK, fine...what's next? Next is the bad lymph nodes buried under my sternum. If I understood everything, those are showing signs of growth again. Then on to the worst of the negative. Doc says he now can see a very small spot on my lung. He says it is very small, and he really didn't seem too excited about it. I will explain my interpretation of this in a moment. Wow, soaking it in still. This is the part that I wasn't really prepared for. I always knew that there was a chance it spread more. That's the stuff that I can't worry about much, unless given a reason. In my mind, if I can feel it...then there is an understandable reason to worry a little bit. I try not to get too excited about the unknown things, or I will worry myself into an early grave.

So my mom refreshed my memory about my grandma dying from lung cancer the year that I graduated. This is what I need to hold near and dear to me right now. A couple of years before Grandma died, she went in for a hip surgery. Mom says that the docs did a scan of some sort at this point in time, related to her surgery. There was a small spot on her lung at this time. However, docs were so concerned about her hip, that the ball got dropped on the spot on her lungs. fast forward a year or so, and Grandma is getting sick, and is diagnosed with lung cancer. The doctor went back and looked at that old scan. Doc said that if they had caught that small spot then, that they could have gotten rid of it. Sadly, by the time this was figured out- her lung cancer was too far advanced. So this is the thought that I have to hold onto. My spot on my lung is as small as Grandma's was originally. We will keep plugging away at chemo, and this little spot will go away!

So there it is, no more waiting or guessing. Now we know. I mostly right on what I thought the outcome would be. I wish I was more wrong, but not to be this time. I felt like a bad girl when I went home...I got kicked out of chemo for the day. I didn't really feel like a bad girl, it was just much more fun to say I got kicked out of chemo. Kicked out of chemo, as it is time to clean out my system again, so I can go try a different kind of chemo. Goodbye to Cisplatin and Gemzar, as we just burnt out another drug. 4th chemo regiment down the drain, which equals out to I've tried 7 different kinds of chemo so far in a year and 10 months. I have to quit looking at it in those terms, as that sounds freaky. Yet, I'm afraid to lose count or I won't remember. I don't want to forget how to spell CAT!

Oncologists

2011-06-21T08:13:00.000-07:00

Well, here I am waiting for it to be time to go get a PET scan. Not really thinking about the scan, as it will be what it will be. I can't change what it says. I am having a hard time putting things on hold for it as well. Can't stop living, I have a PET scan coming up. Regardless of what it says...I still have to keep going.

What I am worrying about however, is my doctor. This, I can control. I am suddenly dreading spending the rest of my life with him. I am still hurt over chemo last week. My fault I'm sure- for just being extra sensitive, but still. Did I over step my bounds? Are my expectations too high? Maybe, but I don't think so. Would I be upset if it happened to someone else, hell yes I would! I envision going to my appointment on Thursday. At this appointment Doc will tell me what he saw on PET scan, and give me his new recommendation of course of action. I see myself not even hearing what he has to say because I am still upset about the week before. Can I visualize it being repaired with him? Not really, I feel like I must just be expecting too much out of my doctor. That I was wrong for asking him how to get my needs met. I don't know, and there currently is not anyone in the cancer center that answers these questions. I also can't help but hear my dad's voice ringing in my ear as a child, "You're never going to get along with anyone acting like that"

I have got to get past this. At least enough to get my treatment. Treatment that I can get anywhere. I have medicaid now, so I am apparently not limited to where I go. There don't appear to be many choices of Oncologists in Missoula. So Oncologists now go on the list of factors in what I decide to do with my life.

# 16 Cisplatin only, and in tears

2011-06-16T09:48:00.000-07:00

I am in the chemo chair waiting to be hooked up. My doctor made me cry today, and I am so upset. He is always very kind and gentle. Today he was in a hurry, running behind and abrupt with me. He told me as much. I haven't seen him for 3 weeks. I haven't seen him in his office for months. So I have to spit out whatever is on my mind in the chemo chair. I knew I had questions for him regarding Patient Navigators, and resources on how I can get my needs met within the hospital. I didn't want to overload him, so I knew that that stuff could wait. He is the director of the cancer center. I really wanted to ask hm about my expectations for Hope in the cancer center, but I refrained.

What we did cover is yes, advanced, recurrent, and metastatic breast cancer is pretty much the same. I do have a copy of my pathology report. I didn't realise that it looks different then my surgery pathology report. So the mass on my chest is the same stuff as my original tumor. He said that we would get me scheduled for my PET scan today. He said his expectation of the PET scan was that we would be holding steady. He asked me how my mass was, and I said it wasn't going down anymore. That it felt like it did 2 weeks after surgery. NOW of course I think, hmmm, maybe that is where the conversation went south. I don't want there to have been an error made. However the more I feel like I am not getting a proper answer to what happened, the more I feel like the subject is a source of aggravation.

It went down hill from there. He can't write me a prescription on any of my vitamins so Medicaid will pay for them. The cancer center is in between social workers, and he cut me short as he didn't have time to get into the ins and outs of patient navigators and how we get our needs met. We'll have years to talk about that. He didn't have an answer for me when I asked him what happens when my counts aren't right because I couldn't buy the supplements that he told me to take. I'm sure the answer is just as simple as, if my counts aren't right...I don't get chemo. He just looked at me and said, I don't know what to tell you. I was obviously upset. I didn't expect him to coddle me, but I did expect some sort of direction from him. He is my doctor...where am I supposed to go for resources, if I don't know? I try really hard not to get offended too easy by others reactions. Cancer has taught me that we really have no clue what is going on in someone else's world, unless they allow us to see. I also know that I am extra sensitive to things right now. However, I am having a super hard time not being offended by his reaction today. I think I would be pissed for someone else if I overheard him speak to another patient that way.

Komen's Wild Ride (Repost)

2011-06-15T12:08:00.000-07:00

Just taking a moment to travel through the blog world. Along my way, I found this blog. How very interesting, as it goes along hand in hand with my current thoughts. Does any amount ever make it into the pockets of a woman going through treatment? Like to help pay a cell phone bill. So we can continue healing and keeping our support systems alive? I've only ever seen it going for a cure. Here is a copy of the blog post, written by Alicia over at WEGO Health. What do YOU think?

Dear Susan G. Komen for the Cure:

Stop. Just stop. I've reached the point where I'm embarrassed by you and all your branding efforts for the cure. I see tons of pink ribbons, plastered on everything from shampoo to lawn mowers and cat litter. I'm beyond aware. I'm frustrated. I can no longer justify your breast cancer awareness campaigns to my friends that want to know why there's no cure. I've received more emails in the past week over at Awesome Cancer Survivor expressing exasperation at the breast cancer community than I care to count. As a breast cancer survivor, I shouldn't have to justify your behaviors.

When you launched your partnership with Kentucky Fried Chicken (aka "Buckets for the Cure"), I excused your lapse of judgment. I assumed it was a temporary slip, and you'd eventually focus your energies back on partnerships and alliances that aligned more closely with your stated goal of "For the Cure." You trumpeted the partnership, declaring KFC would make the largest one time donation of an estimated $8 million to Komen. The ultimate goal of the $8 million donation never materialized. According to your own reports, you only took in $4.2 million. Not pocket change by any stretch of the imagination, but only about half of what you were looking to grab. You are the self-proclaimed leader of the breast cancer community. Where is your leadership?

When you went after the little guys, suing everyone and anything using the phrase "for the cure", I lost all respect for you. You attacked the very people that are desperately seeking a cure and trying to find some solace in the face of this devastating disease. Instead of reaching out your hand to help lift up these groups, you smacked them down with frivolous lawsuits. Exactly how is "Grandmas for the Cure" hurting your multi-million dollar campaign and branding efforts? These small charities, working for a cure, picked up the baton you dropped long ago. You are the self-proclaimed leader of the breast cancer community. Where is your leadership? Where is your compassion?

When you launched a perfume, I realized your days as a leading breast cancer charity were dwindling. A perfume named "Promise Me?" Why? Do you know that chemical sensitivities are heightened while undergoing chemotherapy? To this day, almost 18 years after my last chemo, I still have trouble with certain smells and tastes. I can't imagine the thought of wearing a perfume that reminds me, everyday, of the lack of progress made in the fight against breast cancer. Were you expecting every woman fighting breast cancer to spritz on some "Promise Me" before heading out to the cancer center? You are the self-proclaimed leader of the breast cancer community. Where is your leadership? Where is your compassion? Where is your creativity?

And now this: Roller Coasters for the Cure. Did someone run this one by corporate? A Komen affiliate has co-opted the pink ribbon to plaster on a roller coaster ride. According to the press release: "Wild Waves challenges all U.S. theme parks to paint their Skycoasters pink to raise awareness for breast cancer." Save the paint. Remind me again - for what exactly are you raising awareness? We're all aware. It's time to move beyond awareness. You are the self-proclaimed leader of the breast cancer community. Where is your leadership? Where is your compassion? Where is your creativity? Where is your self-respect?

The backlash is here. The Komen Bandits are organizing. Count me in as a bandit. I'll carry the torch for Joan, Jeannie, Susan, Martha, Mary, Karen, and Lisa. These women were dear friends that died from metastatic breast cancer. I'm asking you to take a leadership role in addressing the lack of progress made for those facing the metastatic aspects of this disease. The once mighty Pink Ribbon, used all these years to herald the importance of breast cancer awareness, is quickly becoming the poster child for cause marketing overload. Don't make this your legacy and drag the rest of the breast cancer community down with you.

You've done a great job of making us all aware of breast cancer. Please take those next steps to help those that continue to suffer. Leaders don't rest on their laurels. They keep moving, they keep innovating. They don't go back and rehash the same products and promotions over and over again. We get it: You could sell a pink ribbon popsicle to a woman in white gloves. But, please know, your days of King of the Mountain won't last long if you don't address the groundswell of criticism directed at you. Wake up, the bandits are coming. And we're not happy.

Promise me that metastatic disease will become a priority for your organization.
Promise me that you'll visit the nearest cancer center and sit with those women going through treatment right now. It's not a pretty sight. Frustration is alive and well there, if not much anything else.
Promise me that you'll remember why you started this fight in the first place.

Promise me that you'll take these next steps or get out of the way.

Is it the meds or me?

2011-06-15T11:41:00.000-07:00

Hello all! Today is Wed. and I should be sitting in a chemo chair right now. I am not, as today was the only day to do any training with Carrie and Hope. So we have a training in about an hour, and I will go to chemo tomorrow. Yay, with my regular oncologist!

Not feeling to shabby today. My back is killing me. I can't imagine it is my new bed already, though it may be due to too much time in bed or not sitting right in the computer chair...or not doing enough exercise to stretch my back out. OK, it's not killing me either, but it doesn't feel nice. I don't usually need to take pain meds. I have taken a lot of Tylenol the last 4 days it seems. Seems to go hand in hand with when I get Gemzar now. That seems to have changed over the last couple of months. I don't feel entirely shitty, just not great. Just a little achy, chilly and off. Not like the Taxol made me feel though. It's just faint enough that it always makes me question- is it chemo or am I just being a baby? I hate that! Seems like I have done a lot of that through this journey- is it the meds, or is it me?

OK, change of plans! WRTT just called. Carrie was wanting to know how Hope is doing on her long leash. I think that she would be satisfied with our performance. So, I think that we just skipped a class. We won't meet Carrie today, but we will go to the ranch next week. There we will work more on our "leave its". Whoo-hoo for Hope!