Next step, another study!

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

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

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

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)

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?

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!

Alone with my thoughts

Alone with my thoughts, and I am sad. The tears are real coming down my face, so they must be there for a reason. Maybe a little lonely, maybe a little stir crazy, maybe a little scared. Aha, scared...seems to resonate, but why? Scared because....I don't know if I am doing the right thing, whatever that is? Sometimes we need reassurance that we are on the right path, and headed the right direction. Is 1 to person reassuring you enough, or does it depend on the type of relationship you have with that person? Am I supposed to be a big girl who does all her reassuring for herself? I feel like nobody knows, including myself. The docs all say they will do their best, as I am too young. What about the 80 year olds, they better get your best too!

I am still not satisfied with the "I don't know" regarding the mass on my chest. My dad thinks I have it stuck in my mind that an error was made, and I won't be satisfied until an error really pops up. Hmmm, maybe I have chemo brain and can't remember all of the conversation. Entirely possible, but I think the real culprit is a s simple as I don't understand. There is a lot about this disease that I don't understand. I have been soaking it all in the last 2 years when I want am and capable of it. Everything is not always important at every moment. I keep coming back to this though. Today I read something about secondary cancers caused by radiation. Guess where my mind went? Yep, right there....maybe that's where that mass came from. The mass that I can't currently differentiate between scar tissue and cancer. Which goes into, maybe I do need a second opinion. Nobody seems to think that I do, and in fact, no one is even encouraging me to for the sake of peace of mind. In all reality, if I thought that I could get a totally unrelated second opinion- I wouldn't mind. How do I go about this? I want an opinion outside of Missoula. If one is going to go for a second opinion, shouldn't you go for the best? Who is this, and how do I afford to get there?

Next bothering me....I can't just take a day and veg out in my pajamas without feeling like I am doing something wrong. Whether it's in my own head, or someone else's. For my own thoughts, I may be having a problem deciding whether I am depressed, or really just not feeling so hot. I say both, and to rest when I feel like I should. My parent's solution is to get a job. It would keep me busy and help with the money situation. That really just grinds at me. Other people work, and they must feel much worse then me. I don't feel that bad. Jobs are not that easy to come by, and I would much rather do a job that is fulfilling instead of any old job to survive. I get what I need to get done, done. Then I am done. I can't imagine trying to go to work on top of it all. All, like I do so much. Makes me feel more like I am lazy or depressed. There should be a test to gauge how I am really feeling, instead of trying to weed through tough girl attitude.

Let's see, my ex-husband says I am sitting here dying. That's nice to know, as I was not aware of this. I don't feel like I am. I need a test again- dying or just recouping still from married life? Hopefully I won't get chewed out for writing this, and all will be fine. I couldn't "fix" things there either, so I did fix it. I moved.

I have a hard time accepting that there is no fix. Funny part is, I can do that with cancer- as it mostly is out of my control. I understand that health related things, that may be the case. When it comes to money or love, there is always a fix....you just may not like the fix. Am I just talking to the wrong people, or am I really just supposed to keep riding this out and try not to worry? I don't even really make any sense right now. I just feel so much pressure to make the right decision. What decision you ask, hell if I know. Maybe it is because I feel so alone in all these decisions, once again...all what decisions?

Maybe the real root of the problem is I feel alone. Not really lonely, as I am in a houseful. Just maybe alone in the fact that unless you are walking in these shoes, maybe it is pretty hard to understand. Maybe when I tell people how I am doing, I am too strong about it? Crap, I don't know! Alone as in my family is 2 hours away. If I lived there, I would love to go visit...for 3 hours and drive back down the street to go home to my own bed where I am surrounded by the things that make me comfortable. I know that I need to get out more, as it does make me feel better. Sunshine on my shoulders makes me happy!

I feel like I am stuck in a bubble full of excuses, but I do not believe I am just waiting to die. Now I just need to figure out how to differentiate between excuses and reality. I no longer have total control over my reality, but that doesn't mean that I have none!

OK, time for an Ativan and a movie. I have rambled on so long, that I don't even make sense to myself. How can I make sense to others in this confused state?

Hope skips a class!

Yay for Hope! Hope is good, we all should have Hope, without Hope- there is darkness all around.

OK lets's see. We are behind a couple of days, so we better squeeze a mom update in here too. So I had my 15th dose of my current chemo on Wed- both Cispaltin and Gemzar. My Onc is still on vacation. I got excited for a minute, as substitute Onc read notes wrong and was scheduling me for a PET scan this coming week. I believe she scheduled it anyways, but had to come back to inform me notes said for the end of June. I'm looking at the calendar, sure more waiting but the end of the month is not that far. Highlight of chemo was realizing that I was 2 hours before I got hooked up. So I asked my nurse if she knew how to walk Hope pretty quickly, before she hooked me up. I told her what I knew about my friend walking her through the shortcut by radiation, instead of up the parking lot ramps. I could see the grass, just not sure how to get there. I thought it was just a courtyard! I picked her brain, and off I went. I was in my new usual parking spot in the Cancer Center parking in the garage. Into the elevator we went, and we got off on the radiation floor. My favorite receptionist saw me come in, and showed me the way...after greeting Hope, of course! She grabbed 2 magazines, for the 2 doors right around the corner. There we were on the backside of the hospital. Quick potty, and back in. Too cool, as long as we don't get in trouble. We can do this in 10 minutes. Soon enough, she won't be able to go wait for me during chemo, as it will be too warm. Now we know what the secret trick is, plus I can see her out the window if someone else takes her. So that's it, nothing exciting health wise. Feeling good, and not even very tired yet. Could have something to do with the sunshine?

We had another training session with Carrie yesterday. She met us near 13th and Shillinger again, to go visit the dogs. I think all we saw was the 5 bassets, and the lonely jack russell. In fact, we didn't make it very far down the street. Carrie said we just skipped a class, and we went back to the van for the 30 ft. lead!
A couple of posts ago I talked about walking Hope through there, and it was hard to treat her right...because she was doing so good with the dogs. Between what I told Carrie about that, and how Hope was acting...we just graduated. Good girl Hope, and good girl mom too!

So back off we went. I have discovered that I really not am as anal as some people would think. If so, there is no way in heck I could have let all that leash just drag around behind me! Letting it drag is just the easiest way, as long as you keep it away from cars. It's a bit tricky to get used to, but no big deal. We are now working off the 10' mark on the lead. We bumped it up a notch with our comes, which involves more waiting, and mom without treats in her hand initially. Took me a few to catch up with what Carrie was wanting us to do, but I think I got the jist. Hope is just so anxious for more treats, sometimes it seems hard to learn to do it the right way. Carrie doesn't seem to think so, she says we are right on track. With our "there's our friends", we have also bumped it up a notch with our "leave its" Now we do 1 "leave it", get past the dogs, and a second treat as a "good leave it". Now we are starting to work on not so much treating, as she isn't paying much mind to all the dogs in the hood.

So we parted ways for another week. Hope and I went off to The Trailhead to purchase 33' of climbing rope stuff. We were quite happy- $14.85 for material, $1.79 for clip....and mom gets to sew. An hour later, here is our new 30' lead!

Carrie will be so happy to hear that I made the lead that day, and today Hope and I got right back out there to make sure we remembered! I think we did alright. All the dogs on 13th were out barking. All the big treats were gone on the 1 block. It was like running the gauntlet, and I know Carrie would have been impressed! We even  stopped to talk to the basset hound guy for 10 minutes. They were barking their head's off, as bassets do, and Hope barely paid mind. She accepted a treat and pets from their owner. He loves that the dog trainers like his street to walk down. He understands what we are doing. He says some of his neighbors get cranky, but I have a sneaking suspicion if his bassets didn't bark...they might not mind so much. I think Hope did really good today on our walk. When we got home, I hate her wait for a very long time...ok a good 5 minutes. I was over by the porch at the end of the lead, and she waited in the truck.

Long enough for me to take a couple of picture and send them to Facebook. She stayed in the truck until I said OK!

I am so proud of my Hope, she is doing awesome. We hung out in the front yard for awhile. OK, me in the driveway, and Hope in the street. She was at the end of her lead, and I know she would have bolted if she wasn't on that lead. However, she did not pull and she kept coming back to check in and get a treat. I think she did awesome today!

Our first breast cancer support group

OK, so we went. There was a nutrition speaker there, which was alright. I have the tendency to shut out the good things that I should be doing when I can't follow through for lack of money. However, summer is here and I need out of the house more. It keeps both Hope and I from getting stagnate. I called ahead and made arrangements to bring Hope. I figured what the heck, worst that will happen is that they will say no. The answer was yes, we could try! Yay, so off we went to St. Xavier's in Missoula for our first support group. Hope did very good I thought. Considering that she still has training to go, and she is young and learning. She mostly sat or layed by me, with no barking of course. She got a little bit restless, as she loves to smell and visit. She also was quite interested in the light foot traffic in the hallway. We sat next to the door in the back of the group. My choice, as I had told the coordinator to just give me the sign if she was a problem. She didn't seem to think that she was a problem...and of course it helps that her daughter has a pibble in training to be a service dog. I think that next time we go, I need to make sure to leave early enough so we can have a little walk around the neighborhood before we go in. Overall, I am very pleased how it went. I will start going with or without Hope regardless, just to get out of the house and visit with other survivors. I can't share my wealth of knowledge in person if I don't get out.

Afterwards, we went back to Quality Supply again to try and fine tune the electric fence. I keep missing the guy with the most fence experience there, plus they are out of the right ground rods anyways. On the way out, I had to look at the discount table, which was full of pet stuff. I couldn't resist the pig costume, which will go back as it doesn't really fit Hope. I think she is a medium size dog, with a large size chest, duh! Anyways, we had to have a picture of course.

Hopalope, or pigley?

Little boy who cried wolf

I may ask people to listen to me a lot, but I don't truly reach out and ask for help often. Sometimes I get embarrassed when the help is offered, "Who me? I don't want all this attention, really I don't" Other times however, it has a different effect on me. What about the times when you really think you can't stand it anymore and you think you are just going to explode? You decide to buck up and ask for help, and no one is there. By the time they get there, if they get there, then you feel stupid. The moment has calmed down, or passed. Similar but different from when the little boy who cried wolf. Was it really that big of a deal, or is my head just whacked? Or maybe it is still that big of a deal, but you have managed to shove it to the back of your brain because you are now gun shy about revealing your innermost fears again.

Then there are those who say they want to help, but it has to be on their terms. What kind of help is this, you aren't the one who needed help! If I have to do battle with you, to get the help that I need....I'm likely to crawl in a hole and say forget about it. Somethings are just not worth the battle.

The sun is out, and I am blah

Blah, blah, blah...OK I admit it, I am feeling blah today. Why am I feeling blah today? Let's see, physically I am tired, and my stomach is not satisfied with the banana I ate. So now I am onto a Kirkland Chocolate weight loss shake. The shake is not for weight loss, as I have lost all my chemo/stress weight from last year. I'm not a big breakfast eater, as I prefer salty over sweet. As you can see with the bananas, I do try...I don't like bananas. The shake will fill me up usually and buy me some time until I do figure out what sounds good to eat. It's not really the chemo, just not a breakfast person. I'd really rather have bacon and eggs, but who wants to cook bacon and eggs for 1? Plus, the grease really is the 1 thing that doesn't sit so well with me during chemo. OK, so we got that covered...physically not too terrible.

Next up are my 3 to dos for today. I don't feel like doing either of them, as  they would require moving. First we need to go do another dog walk where we went yesterday. I can get up and moving for this one. Once we are moving, it's not so bad. Hurry up and down your shake girl, and you will feel more like it once the void in your stomach is gone! Next up, we need to at least Go to Quality Supply and get 1 more ground rod for the electric fence. Just go get it, don't have to put it in today...just go get it! Last but not least we have- grocery shopping! It's the 4th, food stamp money is on the card. And here we are to the root of today's real frustration I think.

I don't feel like going shopping, but I know that I need to. If I just make a list and go to Walmart, I will get it knocked out in a hurry. This is the month that I told myself that I would try and go to the Good Food Store and try to shop. I know I should try and eat more organic. Where to start? I know certain fruits are better, but what do I buy...hateful bananas? I don't think they need to be organic because of the skin. Chicken, yes that would be a great place to start. I don't need chicken this month. I should probably just wait until I feel better to do this, but I don't want to be craving something at 10 pm, and not have it. If I could just go to the store and buy whatever sounds good, there would be no struggle. Then I'll go back later and get what I need when I feel better. Nice thought, but no dice. If I shop like that, my food card will be empty in 1 week, then what do I do? I personally like top ramen, and it's an easy fix when nothing sounds good. However, I probably shouldn't be eating it all the time. Why is it that suddenly that's all I can think of that sounds good?

I think this whole blah is mostly boiling down to stupid money. Funny part of it is....all those years that I bartended, and didn't claim all my tips to Uncle Sam...I knew somewhere along the way it would bite me in the ass. I knew it would be receiving less money down the road somewhere. I didn't care, it was what got me through at the moment. Who the hell would have thought that it was when I got cancer that it would bite me in the ass??????? Hopefully I don't sound too much like a pity party, as I don't mean to. The cancer is not my fault, even though I could have chosen to take better care of myself. The financial aspect though, is my fault. I could have made better choices over the years, that would have put me in a much better financial situation. Would I have experienced all that I have...probably not. Would  it really and truly made a difference in my life now...maybe, maybe not. I acknowledge this, but I can not beat myself up over it.
 So now that I've got all that worked through...do I feel any better? Maybe, but I think it is my stomach void mellowing out finally. I still don't know the solution, and I still don't know what to shop for. I'd really rather just avoid it all and take a nap. That doesn't work either, as  Hope and I need a little exercise. So I guess we better go for our walk and Quality Supply. Then well go to maybe Albertson's and just get something for tonight, and some peanut butter...and save the rest for a day that I am a little bit more motivated and feeling of a less foggy mind.

Why is it that suddenly I just want my mommy? I guess it doesn't get more honest then that. Just one of those days. Once upon a time, it would have been my husband. Some days you just want to be babied a little bit. I don't do that very often. I know she is in the middle of an open house right now, and I don't want to disturb her. Would she want me to call and just say so? I think so, so I will call her for a quick moment and hope she has waterproof mascara on!

There's our friends!

Hello all, it's me the Hopalope! Today has been a great day. Mom is really tired today from chemo, so I got my paws on the keyboard for her...aren't I a talented pooch? There is an angel watching over us. Carrie called mom today before my training, and told us that a special friend of ours called and paid for 3 training sessions for me! Maybe we are heading in the right direction after all. Plus, another special friend made a donation via our blog. This is so perfect, as guess what else Mom has found? She found somebody on Whocanhelp.com that is working on a logo with my head on it! Mom says we got the wheel in motion, now we just have to keep it going. Having somebody else do some of the work will help keep us moving forward.

Today Carrie took us to a great dog neighborhood. There were lots of dogs, but they were all behind fences. Carrie uses this neighborhood all the time for dogs like me. She knew where all the dogs lived, and what their habits were. So we worked a little bit more on our "this ways", so I can get better at not tripping  mom. I learned a lot about "there's our friends". They were all behind fences, so they couldn't be rude and come up and get in my face. I don't like it so well when dogs are rude and I don't know them. Carrie said I did very good. Mom thinks I did so good, that she almost couldn't reward me so well. This is because I was almost ignoring everybody! Mom says we will go back to the same neighborhood and do it again tomorrow- just me and mom. This way we will both  remember what Carrie taught us. So that's all for now. Mom says I need to go post a new picture on my facebook page, and call it good for the night. She says that she is super tired from chemo, but that she feels really good. A movie and snuggling with me will fix everything!

Getting ready to walk with Carrie, we love her!

Lotus Survival Foundation Mind, Body, Soul Retreat

Where to start? I don't even know, it was all so fabulous. This story starts back in the fall of 2010, when I decided to look up breast cancer retreats on the computer. I had done Casting for Recovery back in August, and it was amazing! I probably looked at 10 different ones, all over the country. I only emailed a couple of them, as it looked like I would not be able to qualify. I really didn't think I'd be able to qualify for Lotus Survival Foundation- Mind Body Soul retreat, but I wrote to them anyways. (Little did I know that I was the first applicant, and how excited they were to hear from me!) I was also quite surprised to hear back from Lulu Johnson another month or so down the road, asking me to submit financials and a doctor's note. It just seemed so very nice...and far away. How was I to get there, what about my chemo treatments and all the other things that could be going on in  my life in May. It has been really hard to see through the fog to plan anything! If it wasn't for Lulu's persistence in calling me to get my paperwork in order...I never would have made it. I think I was probably on my Docetaxol treatments when I started talking to Lulu. Those of you who have taken Docetaxol will understand the fog. I am so very grateful for Lulu's persistence, because I had no clue that my life would have spiralled that much more out of my control by the retreat in May. I was becoming a wreck, not so much due to the cancer, as it was because of things going on in my personal life. I believe I knew by February that I had been accepted to the program, and had received a complete grant to attend the retreat. Thank you so much again Claudia and Jose for all you have given to make this happen! I can never thank you enough, but I CAN promise to continue to pay it forward.
   May 22 finally arrived. My room mate and my dog dropped me off at the airport, and I was off and flying to Florida! I left my cell phone at home and panicked at the airport. Once I realized that it was going to have to be overnighted, I was OK. I made it to the right hotel at the Don Cesar Beach House Suites to join everyone else that was already there. I think I came the farthest distance to participate, and was the second to last to arrive. I couldn't believe my room when I opened the door! My very own room with 2 bathrooms, kitchenette, and a balcony facing the Gulf of Mexico. What am I going to do with 2 bathrooms? It was all so wonderful, but it just felt like too much. Really, all for me?

        Then it was off for hors d'oeuvres, and to meet the all the rest of the guests next to the pool. There were about 30 of us survivor  guests, plus another 20 volunteers, speakers, and caretakers- many survivors themselves. For me, it didn't take long for the silent tears to start falling. Those of you who know me, will know how eternally grateful I am for the things that people have done to help me through all of this. The tears mean many things, but mostly reflect how badly I want to pay it forward and do the same for others. It is frustrating, as I know that there are some things I need to get straight with myself, before I can be much good to others. This past week made me realise that I am already making a difference. We all enjoyed or welcome gathering, and then it was free time. I ended up going with Monica- my new sister survivor from CO, Lori Ovitz of Facing the Mirror with Cancer, and Susan McHugh of Pink Ribbon Associates for a bite to eat. Lori is a professional makeup artist that came to do make overs, and Susan is a survivor/cancer coach along with her gift website. So off to the The Sloppy Pelican we went. We had a fabulous time with food and beverages, whilst getting to know each other. For me personally, I do better in smaller groups. I have the tendency to let everyone else talk in bigger groups, so this was perfect. We weren't the only ones who had this idea, as we were surprised to see another group when we went out onto the deck. Great minds think alike! I think the rest of the evening was spent with a walk on the beach. The temperature was perfect, and the water warm. Just don't forget to "shuffle" your feet in the water as it was stingray season. I don't think I turned out the lights before 2am any night I was here. I can sleep when I get home. I was much more interested in visiting with everyone else on our balconies at night!
  So needless to say, I was half an hour late for Laughing yoga with Aubrey. However, I did make it and it was wonderful. Aubrey- I loved the yoga and I truly did make an effort to join the fun! For me, the connections that I was making on the balconies at night was more important for me. Especially to hear how people were learning how to make a difference and pay it forward. And you were one of those people, I just didn't get to hang out with you on a balcony. To hear it told how you changed since your treatment is amazing. I could never imagine you so quiet and shy...you truly are a lotus! I truly should have blogged through out this, so I could give my readers a play by play, but it was just not meant to be I guess. Me feeling and absorbing everything in the here and now was much more important for me.

Fast forward to a week later- I really should have made time to blog through out the retreat. I don't want to forget the wonderful people I met, and all the wonderful speakers. I really should be winding down for the night, but I really want to get this blog published. I'm afraid if I wait 1 more day, chemo brain will come and wipe it away! Good thing I still have my retreat schedule so I can run through it. It does not mean that the rest of the retreat was any less worthwhile, just means that I am tired. It will all get lost somewhere in my brain if I wait another few more days to get it out, and we can't have that!

So after Laughing Yoga on Day 2, we moved on to Susan McHugh, who is a cancer coach amongst all her many talents. After lunch, we got to meet with Areanne Breedlove. She is a CPA, with a lot of good advice regarding financial issues relating to cancer. Sorry Areanne, I can't find a website for you! Next up was Lori Ovitz for makeovers! I got to be her demonstration model. I have some really good eyebrows (lack of) going on right now, so I was the perfect model for her eyebrow technique.

Day 3, let's see. Susan McHugh spoke again regarding sexuality and dating issues. This one was a lot of fun, especially when Aubrey brought in some affirmation cards. We all had to read one, ending it with "in the bedroom" Next up was Xiomora Boyce, who dips her toes in just a little bit of everything...including comedy. Let me tell you, this lady is amazing and hilarious! I can't even remember how much we actually talked about the side effects of treatment as we were supposed to. I just loved to hear her tell her story, and soak in her positive energy. Tania Fabela, I did not catch anything about nutrition. I know, I'm a rebel! I chose instead to go upstairs to Lori Ovitz's room, to assist her with makeovers. It was a madhouse up there, and she busted out somewhere around 7 makeovers in about 3 hours. My absolute favorite part is trying to capture the looks on my new sister's faces when she gave them the mirror to see! We got done just in time to go join the rest of the crew at Gigis's Italian Restaurant. I got to sit at the "Captain's table", which was wonderful. This was the first time that I had gotten to sit down with Claudia and Jose. I can be a little bit shy at times, and this was a wonderful opportunity to find out a little bit more about the Lotus Survival Foundation. I could hear the joy and excitement in her voice when she told me that I was their very first applicant. Claudia, I am so happy  to have been able to make this dream a reality for you! You are an amazing woman. Afterwards, a little shopping at Walgreens, sunset on the beach and  and a birthday drink with my new sister Monica at the bar on the beach. I'm pretty sure I was going to bed early this night, and still ended up on a balcony with amazing women.

Day 4- Well I made it to the beach at 7 for yoga. I only made it about 15 minutes, and got overcome with frustration. I went back to bed. I just felt funny and icky. I went down for breakfast, and just was not my normal, cheerful self. Amy Sear was on deck for Asian Secrets of Self-Healing. A  lot of what she said really rang home. Things that somehow you know, yet don't choose to put it into action. I was just a mess listening, as so much hit home. And I still felt icky. I finally realized that I had picked up on some negative energy the night before, and it was awful. I'm sure we do this all the time, but I have never been in such a peaceful place to have it come crashing in so rudely. Aubrey came over and did some Reikki on me. I'd never had it done before. It was amazing, whatever she did! I'm not usually so easy to let someone I barely know so close. However, I was very receptive to try out what she had to offer. When I thought she was done, I just kind of melted into her chest. She wasn't done, and continued to work on me. I melted, and cried and just let the bad stuff flow out of me somewhere. I felt SO much better after she was done. No more ickies, and I truly did feel revitalized. I think I need to know more about Reikki for myself, and what a wonderful gift t give to others! Next up was Scott Phillips, who is a patient navigator at Heritage hospital. I have a breast care coordinator at the Montana Cancer Center, but no patient navigator that I am aware of. We need one! They really sound like the go to person when dealing with cancer. They fall into the niche that our doctor's don't. I don't know that I have the drive to be one, but I can see it seems to be greatly lacking in my cancer center. Something for me to chew on as I try to figure out where my new niche is. We had a wonderful farewell dinner, and afterward we did a moon walk on the beach. We had "in memory of" candles, and popped "negative stuff" balloons. Here are all are electric candles in the sand. It was pretty cool looking. Up next, more visiting for the evening. By now I'm thinking just not enough time. I sat with some amazing women again, and I only wish I had more time to get to know everyone, and hear their stories!

Day 5- OK, not ready to go home, but I do miss my Hope! I did pretty good about not missing her until it was close to time to go home. The group started thinning out fast in the morning. Shuttles started leaving at 10am to get people back to trains and planes. My shuttle was the last to leave at 1, so I got to stay for the Q&A session. We also had 1 more surprise guest speaker. Jennifer Allen with Skin Wisdom drove up the night before to share her amazing product with us. She left us with samples of her product, and I can't wait to pass it on to a new person starting radiation. It sounds like an amazing product to lesson the damage/speed up recovery from radiation burns. I want to pass on my bottles to my Radiology Oncologist, as I probably will not be doing radiation again. Knocking on nightstand, as every time I think I know what will happen with this disease- it proves me wrong!

OK, there I did it! I think I remembered everything, thanks to having my retreat schedule still. Oh, I know who I forgot. I can't link to it, nor can I remember the name of the program. We call it Fit to Fight here. I think they might work at the University of North Carolina? This crew is made up of physical therapists, and it sounds like they have a wonderful PT program as part of this cancer center, and it is free. If we had a free one here, I would participate in it. Our program here is only for 8 weeks. I haven't signed up yet, as I have it in my head that I will get kicked out if I miss too many sessions. So I want to make sure I can make it to all the classes before I commit. Soon, my fog is clearing!

So yes, I made it home after an amazing retreat. I felt so good, and so alright with my disease down there. I kept saying that I could think of much worse shoes to be in. I won't forget standing in the Gulf of Mexico at 4:30 on Wed, and hollering to all who would listen...I'd much rather be here then the chemo chair I should just be climbing out of right now! I know I am a compassionate person, but cancer has truly shown me this side of me. For me, listening to everyone else's story, makes mine much easier. I am so blessed to have led such an amazing life. By blessed I mean, lots of other people don't have the strength to walk through all that I have. It hasn't always been easy, nor very pleasant...but it is the dish I was served. I accept it in what I always hope is a gracious manner. I wouldn't change it for anything. A few things I might have done differently, but I can still walk with my head held high. Life is good, even in the face of adversity!

Looking for resources to help get Hope trained

This is a letter looking for a scholarship for Hope's training. The lady that wrote me back suggested posting our story on her Facebook page. I couldn't figure out how to do it right, so it got turned into a blog, and I will post a blog link there instead. I feel like I am really putting myself out there, much more then I want to be. However this battle has forced me to get a bit creative, so here is the basics of what I am thinking.

5/17/11
Hello,
My name is Charmine and Hope is my girl. I rescued her from a Southern ID animal shelter last fall. I fell in love with pit bulls 20+ years ago, but the time was never right for my own. I have been battling St 4 breast cancer since Aug of 2009. In Nov of 2010, I spent a weekend in Butte, and was reminded of 2 things. My own pit bull was on my bucket list, and the therapeutic value of dogs. Needless to say, I started searching the Internet for a pibble to adopt as soon as I got back to my laptop. So many choices!

Then comes Hope! I found her on Petfinder, simply listed with a picture as a female pit bull mix, 2-3 years old- as an owner surrender. She was scheduled to be euthanized 2 days before I found her ad. The shelter was closed by then, so I emailed them to see if she was still alive. The ad also stated that she was good with dogs, cats and people. That was it. First thing Friday morning, I was back looking again, and had forgotten about the dog I had emailed about. I talked to a local rescue and was thinking about a mixed puppy, which really wasn't what I wanted. Then my husband reminded me about that email. I called the shelter and shelter told me she was still alive, but would be put down on Sunday. Shelter person told me the same thing the ad did. I was quite nervous, having never owned my own dog before. I couldn't understand why she was being put down, if she was so good. I showed my friend the ad, and asked him to call again...just to see if we got a different answer. Different person, same answer. As nervous as I was, (Mom IS a worry wart!) I knew that I had to go get her. I figured if she really was too much for me to handle, that we would save her and find her a more experienced home if need be. So off I went for a 16 hour round trip to go get her!

I told the shelter I was coming, and made arrangements to meet the animal control officer after hours to pick her up. Into the room I went to go meet her. All the other dogs were barking..except this beautiful girl. She was more interested in eating the boxer's kibble next to her, which had spilled out into her cage. She stopped and her attention was all mine when I found her. I knew right then that her name was Hope. Hope for a furever home for her, and Hope for me. See, my doctor told me a couple weeks before that with stage 4 recurrent breast cancer, his best guess was I have between 2 and 10 years left to live. I made up my mind right then that she was going to live a ripe old age, and I was going to out live her! The shelter was very kind, and did not charge us her adoption fee, once they found out that she was my bucket list dog.
Hope is my girl. She stays right by my side. My goal for her is to become a certified therapy dog, so we can go spread Hope in the cancer center. She is a very good girl, just needs more socializing and training. Mom needs more training, to build Mom's confidence that she is training Hope right. Since I adopted Hope, we had to move into a friend's basement. I have had a very rough couple of years, and have since divorced my husband. So now we live with a rottweiler and a young lab. We do good with the other dogs, but not perfect as they are un-neutered, and un-trained males. Currently we are working with Wind River Tails & Trails for boarding and training.

The dilemma is this. My doctor has put me on disability for an undetermined amount of time. I called WRTT, and had them max out my credit card to start training Hope. I believe that they are already giving us a discounted rate. Due to the other dog/children situation in the house, I chose to have Hope boarded while I visited my grandmother, and again when I go to a much needed breast cancer retreat next week. I figured this was a much better option then spending it on training, then taking a chance on something bad happening while I was gone. I have $40 left on my tab after boarding. So I have enough for 1 more training session, which will involve strange dog training, for lack of better terms. I am probably short about $1000 to get her trained and certified. I am quite stressed between her and I both needing more training. I am terrified something bad will happen, if I don't get her trained. Mom is really lost right now, and I need something positive to focus on now, so I can heal myself. Both Hope and I really need a "job" to do, and I believe therapy work is what both of us need, and soon!

My other concern with Hope is also to get her trained well, in case my cancer doesn't shape up and ship out. Not happening, but I do have to be realistic as far as Hope is concerned. If something were to happen to me, I would want her to continue on as a therapy dog if possible. I know that her being well trained, will make a huge difference in who's home she would go to live if something were to happen to me. She is my only child, and she is a very special girl. I know, aren't they all?

So when I ran across your Facebook page, I thought maybe you could help. What I am looking for is a scholarship, or charity type assistance to help with Hope's training. I have been looking on the internet, but am not running across anything that we would be applicable for. Do you have any ideas, or resources that I can check into? Thank you for getting involved and being there for pibbles in MT! I didn't run across your site when I started searching. Thanks so much for your time!

Sincerely, Charmine and Hope

6/2/11 PS-Since I have written the above note, I have created a Facebook page for Hope. We share my blog, as 2 blogs is too much for me. There is a donation button on the bottom of our blog. I feel really uncomfortable having it there, but I am at a loss on what to do. I am in the process of looking for someone to help me design a logo for Charmine's Hope. With this logo, I hope to start selling t-shirts etc. to start generating some income. I am on a very small disability, and will not be going back to my prior source of income. These (hopeful) monies will be first and foremost used to finish Hope's training, and yes- to put some extra monies in my own pocket. Then when Hope and I are back on track, I would like to continue with the fundraising efforts to pay it forward to some very worthy breast cancer foundations. 2 that have touched me personally are Tough Enough to Wear Pink, and Lotus Survival Foundation.

You see, these foundations help take care of survivors in the HERE AND NOW. These are not foundations raising money for a cure. Yes, the cure is very important, but I don't believe they are lacking in as much funding as the here and now. For me personally, finances were and still are my number 1 stress factor. My disability check does not allow for any extras at all. If I am in this boat, I know many others are as well. How many of us go with out the extra vitamin supplements, that help us keep our immune system and energy levels up, because Medicaid and insurance doesn't cover it? What about eating better, which means I should be buying organic when applicable. What about dealing with the mind and soul aspect of things? Many cancer centers offer additional therapies for free. Sadly, Missoula does not appear to have much available. This is something I would like to work on, when I get back on track. This means I have to earn income in a more creative way, so I have the time and energy to work on other projects. Many of us have clothing issues due to surgery scars, and weight gain or loss. What about even just some extra gas money to get out of the house and see a dear friend, or a book about dealing with cancer. Please don't think I am complaining, as I do have it better now, much more then a year ago.

A year ago, I was married and strapped as financially tight as could be. My husband owned a business in a very bad economy, so I did not qualify for Montana's Breast & Cervical Program. Everything had to be paid for out of pocket. Medicaid wouldn't touch me at that point either. I had to call and cancel 3 different times (in tears) just for an appointment just to find out about breast reconstruction. I felt like I was going to have to walk around lopsided for the rest of my life, because I had made some bad financial decisions somewhere along the way and couldn't come up with $125 for a consultation to find out how much reconstruction would cost. These are just some of the obvious things that financially strapped survivors may be going without. I can only imagine what the other unspoken needs are, and most of us prefer to be pretty quiet about these needs. I personally do not want to ask for help, unless I can offer something in return. I don't have a lot to offer in return right now, just a lot of promises to pay it forward when I get back on my feet.

So as you can see, things are looking up. I do have a small disability check, and Medicaid is now picking up the tab. I have Hope in many more ways then one. I am taking all I am learning and trying to hold onto it, so I can help guide someone else down the road. This cancer is my blessing, and I know that I am becoming a much better quality of person along this journey. I can see that I do make a difference in other's lives, and I will continue to do so. I never asked to take this journey, but I walk my path willingly and graciously.