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!

# 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.

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!

Off to my 2nd treatment of my 5th regiment

That sounds crazy, how did I get to 5 different kinds of chemo in a year and a half? Who would have thought? I have also just become aware of the fact that vanilla yogurt with frozen blueberries on top, tastes WAY better the blueberry yogurt. And you all know why I am eating blueberries and yogurt...antioxidants and probiotics.
  So I'm back, my apologies for the lack of update. I have just been just so tired...emotionally, physically and chemically? Referring to the part of chemo that makes me tired, versus just flat out overdoing it. The good news, is the Docetaxol is out of my system, to be never heard from again. My nose stopped driving me crazy about 2 weeks ago, so I can quit walking around picking it. My fingers are getting back to feeling like normal, so I guess I could walk around picking my nose if I wanted to. Did I sound like that was the worst of it 3 weeks ago, because suddenly that is all I remember. Oh, and food has been tasting right again too.
  Onto the nitty gritty, as I know that's why my millions of readers are here today...to get the update that I should have given a week ago, right? So I had a CT scan last Wed, before I got my scheduled dose of Docetaxol. As I suspected, I did not get my scheduled dose of Docetaxol. In fact I got myself booted off the study, and will never take any of the Taxol family again. I got booted from the study because the Docetaxol is acting like fertilizer to my chest mass. CT showed that mass has grown 73% since my last ct, less then 2 months ago. That sucks! So, last dose of Docetaxol was 3 weeks prior, and my blood work looked good. Doc was able to start me on my new regiment that day, which now consists of Cisplatin, and Gemzar- which I will take once a week now.
  H says that she is sorry, but my chemo options will not get any easier from here on out. I can appreciated the honesty, but I don't quite get it. If chemos are spaced out differently, so you body has time to recover, then wouldn't the ones with 2 week gaps be harsher then weekly chemos? Also, so far...my 2 Docetaxols have been much harsher on me then my 1 combo dose, (we'll call it C/G for easy). Even the side effects on the drug sheet look easier. They are really concerned about my blood count, and my liver function this trip around. Maybe it means that we have serious problems it either of those start causing me problems. The painful pain in the ass side effects before were just that pain in the ass, not serious. On my list to ask today!
OK, I'm signing off here. I had a wonderful Sunday with my GF, and I want to write about that later, so I can share some pics of me and my Pink Ladies!