Happy Everything to All!!

It's Christmas Eve, friends, and I am grateful to spend another Christmas with friends and family; and the chance to be grateful and thank all of you for your continued support.

The last few months and several weeks have been up and down. Every day is a cancer adventure and I don't mean adventure in a good way. Every time I put food in my mouth, I'm not sure if it will come back up or not. It's been quite the challenge to get ready for Christmas with all the shopping and running around when I only have energy to maybe visit one store a day and then have to come home and take a nap. But I did it! All is ready for Christmas, hooray!!! It took the help of my mom and my friend, Theresa, helping decorate our tree. It took a lot of help from Richard around the house to conserve my energy and do some of the running around. It took some help from free shipping offers on the internet, but it's true----you aren't helpless if you have cancer and feel like sitting on the couch all day, especially if you have an amazing support team like I do. I am so lucky.

I had a brain MRI and it came back negative--no new tumors. Yay for an empty brain! We will check in on the brain again in 2 months which is our schedule.

The scans that will show the rest of the body (CT, bone, echocardiogram) will be in February. The doctor wanted to put some distance between the radiation and the scans so there would be no false readings. The last CT said my lungs were clear. The last bone scan showed the spots on my spine and sternum that we just radiated, so those spots should be stable now. That leaves the pesky little liver, but the last CT showed that the cancer went down on my liver. Hopefully, it will have gone down even more and everything else is still stable.

My hair is slowly coming out in little handfuls on my pillow and in the shower but you can't really tell yet, unless you visit my shower where all the hair piles up like a nasty little chihuahua.

It has taken me almost 4 years of treatment to get this beaten down by the side effects and medicine so that might mean something like I'm a bit of a bad ass still. I hope. Having such a rough time has put some things in to perspective regarding taking of myself and my family vs. work, even if it's working from home. So, starting January 3rd, I am taking an official leave of absence/short term disability from work. My new job will be taking care of myself full-time. I hope that will leave more energy to give to my family.

I am a bit nervous about how I will spend my days, although if recent days are any indication, it will be lots of napping with my fuzzy snuggly dog, Yoda, and playing roulette to see what food might actually stay down. I am looking forward to the break, though, and just thinking about myself, which I never do. I've set up a weekly standing appointment with energy medicine/massage with the fabulous ladies at Massage Solutions on Corinne Drive. They really are amazing and have helped me tremendously.

I am also starting to look at yoga schedules to see if I can start that. Perhaps that will help my muscles relax and pull me into the right posture that I've been destroying my whole life with my hunching forward. Sanctuary!!!

I don't like the physical therapist I've been seeing so I won't be back to her after next week. She does trigger point therapy which basically means she squeezes the shit out my muscle until it releases. Quite frankly, I've had enough. I'm returning to the good old fashioned get in touch with your body and breathe technique. Let's see what the hippies know.

I hope you all have a fabulous Christmas. I am grateful for you and your support and the fact that you even bother reading my little ol' blog. I love love love you!

Laura

Hit Her Again!!

Friends, I'm going to be straight with you. These last 2 months have been the hardest for me since my entire time in treatment. Especially the last 2-3 weeks.

I'll give you some highlights. Lumpy is finished being radiated but it still oozes and pusses out every day. They said it might take a few more months to heal completely. What on earth? It hurts and I have a huge bandage across my chest daily. It is uncomfortable and hard to sleep. Boy, how I hate Lumpy. I just want to wear v-necks again without having a 3rd boob. Is that so wrong?

The pain coming out of my neck and down my arm has been somewhat manageable with the help of oxycontin once every 12 hours. The doctor says I'll have to manage with pain meds forever because my only other option is surgery. I say nay nay! Last year at this time when the temperature turned a bit colder I had that awful pain in my right hip and couldn't walk for several weeks, in some old country store weather prediction kind of system. That totally went away and hasn't been back, so you never know. This arm pain is also coinciding with the cold weather. I asked my energy medicine person who recommended a physical therapist. After getting a script from my doctor and several calls to their office (also part of ORMC) I am scheduled to see them at 10 AM tomorrow. Perhaps I can get some exercises that will help with the pain. I am not allowed to do any adjustments or see a chiropractor, by order of my doctor and my husband who is very vehement against chiropractors. Fine with me. I just need some help. Between Lumpy and my whole right side, my sleeping options are narrowed to only one position.

So I've been sleeping on my back, but after awhile the sacrum area gets sore and I need to twist a little in the night to offer some relief. The side effects from my spine radiation have been a burnt esophagus and truckloads and truckloads of phlegm after the radiation beamed on the area of my lungs that produces phlegm. For 2 weeks now I have taken the better part of each morning, throwing up huge bubbles, and dare I say it to gross you out, thick strings of phlegm. It is choking and disgusting and completely exhausting. Sleeping on my back makes the phlegm pool in my throat so that when I wake up and stand up to start my day, the real fun in the bathroom begins. I guess I can say that at least my stepson will grow up pretty used to disgusting things and not wussy about it. I am mortified, of course, every time I know he hears me.

Before PhlegmFest 2010, I already wasn't eating and keeping food down at all. The gobs of phlegm serve as barriers to sending food down and the burnt throat make it really hard to swallow, prolonging the problem eating. I've lost more weight and nobody is happy about that. So they gave me this stuff called "magic mouthwash." Magic for who exactly? It is a pink combination of lidocaine (the numbing stuff you get at the dentist), benadryl, and maalox. You swish it in your mouth and then you swallow it. It's nasty, but it numbs your tongue and throat so you are able to take your pills and eat. The last few days I have been eating better, a few bites here and there and able to keep things down. I've even been able to take my pills without too many problems. The good news is that I do seem to get better, with less phlegm, every day.

It's been really hard because all of these things happen at once which makes them seem completely insurmountable. Is that the word I want? I know I can do it and that God is with me and I have an amazing support team and I just have to shoulder on. But damn, I need a fucking break. How much more suffering do I need to overcome to show everyone what God wants me to show them? I am a walking miracle and I am grateful for every moment that I am given and I talk about it with anyone who will listen. Apparently when I recap from the beginning, I've gone through a lot more then most. I'm not sure why but I'm here and I'll keep being thankful for all of life's wonderful gifts. This suffering makes those gifts shine pretty brightly and it does make me want to scream when I see people missing something so wonderful that is right in front of them.

Thanksgiving was small and very nice. Mom and I spent the night at John's house and then Richard joined us later. After about a half hour of phlegmmy fun, we watched the Macy's parade and had a lovely dinner. I was able to have a few bites of turkey that day and some mashed potatoes. My friend, Jennie, came to visit me from New York. She came in on Friday and left on Monday morning. I was worried that I felt so bad and wouldn't be able to do anything fun but she was OK with sitting on the couch all day with me. She is an amazing friend (and thankfully has a nurse for a mom so she wasn't grossed out). It was a tremendous pick me up and turned out to be lots of quality time together. I really needed that.

Oh, I almost forgot to tell you a story of incompetence. What fun! The week before Thanksgiving, I had my 3rd allergic reaction to Carboplatin so they are officially taking me off of that chemotherapy. The 1st two reactions weren't textbook so they weren't sure, but by the 3rd time I was vomiting and covered in hives so it's got to go, even though it was working pretty damn well. That Wed. my hemoglobin was low so they took the type/cross and set me up to get a blood transfusion the next day.

Thursday I got a call that there were no beds available at MD Anderson or ORMC but that I could go to Lucerne (2 blocks away, part of ORMC) and get blood in the inpatient area. Since it's part of the same hospital system, I thought all would be well. Hardy har har.

We arrived after my spine radiation about 1:00pm. The visit started off delightfully because the gift shop was having a $5 fabulous jewelry sale and we bought a couple Christmas presents. Fun! The administrator went through the paperwork and officially admitted me and then walked us out through a ridiculous maze that we never would have found our way through without him. He brought us to my room which had a little towel swan waiting for me like on the cruise ship. Cute. Cute. Cute. Then he left.

Apparently he didn't tell the nurses I was in the room. I had a gut feeling about it and after about 15 min. John went out and got our nurse who confirmed she had no idea I was there. My nurse during the day was named Vida and I found out later she was the charge nurse. You see what I did there? That sentence had two key pieces of information for you. That Vida is supposed to be the best nurse on the floor at the time and that we were there for a lot longer than need be-the day shift and night shift. We arrived around 1:00 PM and didn't get out until around 11:00 PM. Shameful.

I forgot to put the numbing cream on my port and they did not use the numbing spray, but she did call the pharmacy and order the spray for me which came as a prescription and now I own a bottle of useless numbing spray I will never use. She sprayed me but then didn't access the port right away, going through all of the medicines I am on and medical questions. When she got around to accessing my port (later I found out you have to access within 15 seconds of the spray) it was the most intense pain I have ever felt. She pushed the needle in slowly like she was doing fancy embroidery or something. When I winced and said "just stick it in quickly" she pulled back, said sorry, and pushed it in even slower. I've never had a nurse be so tentative with the port. Perhaps she needs more training as a port nurse, but remember, she was the charge nurse. Can you believe it?

The technician working with Vida was awesome. She ordered me some chicken fingers and fries from the cafeteria and who knew you could get such a thing. Now, admittedly, I was not feeling 100% myself. I had just been told the chemo that was working on the cancer was being taken away from me and needing a blood transfusion made me completely exhausted-not working on all gaskets. The poor woman came to deliver a boxed lunch to me and I kind of freaked out. I started crying since those boxed lunches make me so sick over at MDA. Apparently it was just to tide me over until the chicken fingers came later. When the same woman brought them later, I must have apologized a million times. They must have thought I was completely unstable. But I assure you, as a patient, I am very aware of how things should go down.

More time past and I was waiting for the blood to show up. Vida came in with some tubes and said it was time to do the type & cross. I said, no, we did it yesterday. She said they don't have it and it's not in the computer. I started crying because that was going to add all kinds of time to my transfusion day. Vida says it won't add that much time. I said, no, someone has the type & cross. She called the Lucerne blood bank and they didn't have it and I overheard her say, "the patient won't let me do the type & cross." I said, "wait, don't be ridiculous, of course you'll do it if you can't find it but someone has it. We did it yesterday specifically for this purpose." And then do you know that Vida had the nerve to tell me that they didn't do the type and cross on me yesterday. They just took blood to check my hemoglobin. Really? I went blow by blow retelling the blood taking, chemo, type & cross process and she still said I was wrong. Fascinating. Richard called Frenchy in Dr. Shah's office to complain.

Frenchy was pissed and knew we did the type & cross the day before. She called me directly and said they were wrong, they had the type & cross and the blood was on it's way to me at Lucerne. Since it only had 2 blocks to go, it should be there any minute. About 45 minutes later, Vida came in and said "your blood's here, but I had to eat." Then she disappeared for about 20 more minutes before bringing the 1st blood bag in. I guess no other nurse could have been asked to help me while she ate. Hey, as long as you eat, who cares about the patients?

I asked if I was getting Benadryl with the blood transfusion and she said no and that she never heard of someone getting benadryl with a transfusion. She said there was no order for it in the computer. I know, and have since confirmed, benadryl is always given with blood transfusions, just in case of an allergic reaction. It's given in the IV and acts very quickly to stop whatever adverse reaction is happening. So Vida says no benadryl, no benadryl. About halfway through the bag, I noticed I was starting to get a few itchy hives on my arms. I called Vida in to tell her I was having a reaction and probably needed the benadryl. She said she would call the doctor on call and be back. She left me, a patient having an allergic reaction, alone for 45 minutes! Then she walked back in with a benadryl pill my husband could have walked to Walgreens and gotten faster and said that's what the doctor on call ordered. I said "it's a good thing my throat didn't close up while you were gone" and she said "don't say that."

It was getting closer to 7:00 PM and she said the 2nd shift would be giving me the 2nd bag of blood. I have no idea why. So we sat there and 7:00 came and went. Around 7:45 PM we heard some movement out in the hall that seemed like a shift change. At that point I had been waiting for the 2nd bag of blood for an hour and a half. Richard went to the door to complain and ask what was happening. He heard the nurses talking and saying that I didn't even have a discharge order in the computer and wouldn't be allowed to leave after my transfusion. Wow, it's not in the computer so we can't do it. I'm sorry, Mrs. Goldstein. Going to the bathroom is not in the computer so we can't let you do that either.

Richard asked if we could get the 2nd bag of blood and told them we had been waiting a long time. Our new nurse, Idia, (also the charge nurse) said they were getting the report and we'd just have to wait. Richard said we've been waiting an hour and a half and we need some damn help over here. Idia got all flustered and told him not to be disrespectful to her and that she wasn't going to deal with him talking to her like that. I said, wait a second. He didn't cuss at you, he cussed at the situation. And you're offended by the word damn? Are you kidding me? He didn't call you any names. She left the room.

The new tech came in and was also awesome. The techs totally rock. We told her what was happening and she said she'd just go get that 2nd bag of blood for us. Idia came back in still flustered and mad and talking to us. I told Idia let's talk this out so everyone can feel ok. I don't think my husband cussed at you and we have been waiting a long time and are pretty frustrated. I'm sure you know how to deal with upset patients. We heard her on the phone getting the discharge order from the on-call doctor and by the time she came back in our room, her demeanor had completely changed from shitty nurse to really nice nurse. She even admitted to us that Vida said she could have started the 2nd bag of blood for us. Hmmmm?

Eventually I got the 2nd bag of blood. Idia ended up wheeling us out in a wheelchair around 11:oo PM. She apologized a lot and was super nice. We had already done some major shuffling for my mom to pick up Jake and whatnot and I was completely exhausted. As much energy as I need and get from the blood transfusion, I'm not sure ever going back to Lucerne will be worth it. All of that happening with the other side effects at once. Boy oh boy, I didn't need that.

Today I am starting a new to me chemotherapy called Abraxane. I most definitely will lose my hair but other than that it should be tolerable. It is every other week and not every week so as to give me a little bitty break from coming to the hospital all the time. It is in the taxatere family which is the same as Taxol, the very 1st chemo I ever got. That worked pretty well for about 6 months. Hope this one is tolerable and lasts longer. Put me in remission please? I want N.E.D. No Evidence of Disease!

Hannukah starts tonight and lasts 8 crazy nights, as Adam Sandler says. It is so exciting to see Jake with the candles and presents every night. Afterward, I'm definitely putting the tree up this year if I can get friends to come over and help me, which should be no problem. We need a little Christmas, right this very minute.

I'm still here. I'm still fighting. Hoping that 2011 will bring the miracle of total healing. For now, I'll continue to fight like I'm the Whack-A-Mole game. The cancer pops up in one part of the body and we smack it. Then it pops up in another part of the body and we smack it again! That mallot sure does hurt, but I'm in it to win it. :-)

Love you all!

Laura

What's up friends of Cancercopia? Unfortunately, there is a lot up with me since that last post.

I'm happy to report that the evil lumpy's radiation is complete. It was relatively easy but burned the shit out of my skin. The lump itself today is about 1/4 what it once was so there is progress. The last 2 weeks it has grown even more grotesque as it continues to cook while I am away from the hospital. Ah, yes, I continue my reign as the craziest walking science project you know. Who could challenge me? Muh ha ha!

You can feel the warmth emanating from my sternum as it hopefully fries up some crispy cancer ass. Beginning yesterday, we have some new additions to this saga. Oozing, bleeding blisters. Mmmmm.... I hope you're not reading this over breaky. Today's count was about 5 blisters opened up with puss and bloody goooo---actually there were about 3 yesterday, just in time for a real life Halloween display. Candy anyone?

Apparently, these oozing open sores are a good thing. The nurse told us to expect them and that they were a very good thing. Apparently my body is rejecting and ejecting the evil. Go body go! I am happy to go through this knowing it will pass and all be better after awhile, but let me tell you friends, my chest hurts like a mother trucker. Wowzah. The strain on my chest muscles has moved into my right shoulder and up my neck and pain shoots down my right arm. Not to mention the pure pain from the raw open flesh wound you can't take your eyes off of if you're looking at me full frontal. Don't worry, I've resorted to neosporin and bandages to cover it so you don't have to look away. I'm not an animal!!

I've been struggling with my own stubbornness and refusing to take anything for pain stronger than Advil... uh, make that several Advil a day. Which means I've been in bed in pain a lot.

Yesterday I was in so much pain, my husband asked if he should call the oncologist on-call. I said, no because all he's going to do is prescribe some constipation inducing pain meds that make me completely blotto. About 10 minutes later I realized I might pass out from the pain, so we decided to call the doc. Wait! We didn't need to! We remembered I already had some pain meds. After 3 1/2 years of treatment, I don't even know which meds I have anymore or don't. Bullseye! Hydrocodone!! Substitute for Vicadin!

The rest of my blog will be dedicated to my new friend, Hydrocodone. Wow, what a difference. My corked ass be damned, it really helps with the pain. Cancer survivors out there you know what I'm talking about with the constipation vs. diarrhea dilemma but right now I just need a bit of relief. I was walking around doing things around the house... sat up and ate something... the magic magic beans of blocking pain receptacles. Aaahhhhh....

October was a tough month. While radiating lumpy, I had to get a blood transfusion for energy. It was a transfusion I requested and made a world of difference. Major thanks to anyone out there that donates blood. It is really important. The day I got the transfusion, EVERYTHING, went wrong to get there so imagine something written here that's really funny and annoyed from that experience. I'm just too tired to go back, so I'll just try to catch you up moving forward.

I do have to pause and let you know that when I'm wrong, I say I'm wrong. (nobody puts Baby in the corner) Dr. Ramakrishna is totally personable and awesome these days. He is an absolute joy to talk to, and I'm not even being sarcastic. Dr. Shah gave me some insight that made sense on why he delivers a lot of the medical information to my husband instead of me. She said he deals with a lot of brain tumor patients that can't remember or retain anything so he is used to giving the information to the caregivers. Aha! That makes sense. Also, I am really liking that nurse, Heidi, whom I reamed several blog entries ago. You know, you spend a lot of time with these people and see what they deal with on a daily basis, and I don't know, I have new respect and love for Heidi. There, I said it.

Amazing news: I had a brain scan since last we met and there is nothing active in my brain!! Brain is stable. Hooray, no brain tumors to worry about. Hooty hoot hoot!!!

Same scan--the spine looked worse so I started spine radiation today. 15 treatments-yuck. I could win awards for lying still on treatment and diagnostic machines should there be an award show for cancer survivors-oh so many awards. What would that award show be called anyway? The CancerSucksies? The Nobody's Choice Awards? It would be the longest telecast ever because each celebrity would proselytize about whatever cancer cause they picked. Did you know you could get cancer in your earlobes? How horrible to not be able to accessorize! Let's help those people!

Ok, back to me. I've been ridiculously fatigued and COLD everywhere I go. I've been off of Carboplatin for 3 weeks because my platelets have been too low to get it. This Wednesday I should get it for sure. It serves as a little poisonous security blanket and I do get nervous when we skip a week. Then again, my body is going through so much with this pain and radiation I am happy for the break.

Next CT/echo/bone scans will be in December, along with another brain MRI. I've got to get through the next 3 weeks of radiation, just in time for Hanukkah which starts Dec. 1st! Oh my! Then the scans and Christmas with my family. Maybe I can sleep in 2011.

Thanks for reading. Love you all!! Muchos smoochos!!

Radiation Begins!

I am in the middle of getting 10 radiation treatments for the evil lumpy on my chest. I get 4 days of electron therapy and then 1 day of photon therapy which goes deeper into the tumor, for total coverage. I'm not supposed to have any side effects, other than burned skin, like a really bad sunburn. I've only had 2 treatments and I can definitely feel the heat on my skin. I'm trying to put aloe on it and hope the burns won't be that bad.

Dr. Ramakrishna is in charge of setting up my treatment plan and blasting this thing. Within the walls of the office, Dr. Ramakrishna is all business and doesn't have the warm and fuzziest bedside manor. That is fine, though, because he is the best and as long as he helps save my life, we are all good. Well, this last doctor's appointment, there was a bit of a shift.

At some of my hospital visits, there is a form that I have to fill out over and over again. It's the form with the outline of a body on it where you are supposed to circle the part of your body that hurts. Well, I usually take those forms as an opportunity to show that I am a real person and not just a number, so I draw ridiculous faces on the heads and add flowers or balloons or whatnot.

For Dr. Ramakrishna's appointment, I drew a hideous lump coming out of my chest and a happy face on the head. I added a talk box saying that I was in pain and needed his help. Then I added flowers in the hands of my person. Nobody took the form during our visit, but apparently the doctor saw it later.

When I showed up last Monday for the scan/simulation of the tumor, the doctor came running over to me all smiley. He said he was sorry he didn't take my form at the time but he really appreciated my picture and thought it was "communicative." Heh heh. I'll say. He kept going on about how creative I was and was so friendly and laughing. I had never seen this doctor act like that before.

But here he was, totally friendly and charismatic. I guess art, no matter how much it looks like a three year old drew it, brings people together. I am so surprised and glad to be able to have gotten his attention like that. It's fun to see him let his hair down and laugh a bit.

Eight more radiation treatments to go. Die lumpy die!!!

Hideous Bump!

For several months, there has been an area slightly to the right of my sternum and to the left of my port which has looked like swollen, raised skin.

Sometimes it looks like a bump and sometimes it doesn't. It has come and gone through the prayer at healing mass, various medications, acupuncture and energy healing.

But for the last 2 weeks it has been enormous. It is bigger than a golf ball and it hurts. It hurts when I hug people, which I do a lot, and it hurts no matter which front seat I sit in when the seatbelt is pulled. It hurts when I lie down to sleep. And it looks hideous and abnormal and scares the shit out of me. There, I said it.

Perhaps once it is gone they will find teeth and a spinal column....

Yes, the doctor is aware and asked if I was ready to radiate it. Since we've been watching it for quite some time, it was something we already discussed. However, the NP suggested I try some more guided imagery so I've been trying that for over a week. I guess I'm not very good at it because it's still there. Dammit. Why aren't I more new age? Where the hell did I put those incense sticks from college? Oh, yeah, that's right, I couldn't stand that fucking stench and didn't smoke pot in which I needed to mask the smell from my neighbors. Guess that's why I have so much cancer now.

I was trying to hold on until October 8th before taking the next step to radiation. On October 7th, I will be getting a brain and spine MRI and on October 8th I will meet with Dr. Ramakrishna to discuss the results. I was going to ask him about the hideous lump at that time.

But it's definitely time for plan B. I'm calling my doctor tomorrow and asking her to get me going toward radiation because I can't take this deformity anymore. I need some help and relief from the medical resources that are available. I'm going to ask that Dr. Shah tell Dr. Ramakrishna that she's seen it and he needs to plan whatever he needs to plan to set up radiation. I don't need another appointment with him to look at it and go, "wow, guess we should radiate that" then he takes my $50 copay. If I have to do that, I will be very pissed. Especially because Dr. Ramakrishna likes to deliver his statements to my husband, rather than me, the patient. All of this we put up with because he's very good at what he does and has been instrumental in helping save my life. I'm just saying I don't have any emotional resources left to deal with petty bullshit. I'll keep you posted, my lovelies.

Please keep sending prayers and healing thoughts. Get out your incense or anything you think might help. I would love to wake up with the lump gone and no reason to set up yet another radiation procedure.

Thank you and love to all!

Laura

Team Laurapalooza Time!

Click on the Team Laurapalooza text above to see all about Team Laurapalooza at this year's American Cancer Society's Making Strides Against Breast Cancer 5k walk.

This year's walk is Saturday, October 23, 2010. It starts at 8am and Laurapalooza will be meeting at 7am so we can do our best to get a team picture and stay together through the thousands and thousands of people. We will meet to the left of the stage where the musicians are performing-if you are looking at the stage, walk to your left.

Another great thing about this 5k is that it is non-competitive. No one will be recording anyone's times and lots of people show up with babies in strollers and dogs on leases. I think my mother-in-law will be coming out in her wheelchair again!

You can join the team online and fundraise for the team, or you can just show up and walk. I am always overwhelmed by the amazing people that come to walk with me and show their support. Thank you for all team members past and present!!

And remember Team Laurapalooza's motto: Fuck Awareness! Find A Cure!!!

Muchos Smoochos!

Rockstar Scans!!

I'd like to share this awesome graph and lots of good news with my cancercopia family. Go with the image posted sideways. I can't figure out how to turn it because I have no patience.

This is a graph of one of two tumor marker tests. This graph shows the last three years of my treatment. Tumor marker tests are blood tests that indicate the number of tumors that are circulating in your body because the cancer cells read differently then normal cells... something like that. That's my unsophisticated interpretation of what's a lot more scientific. All I know is that it's great when they go down and really sucks when they go up.

Last January, this 27-29 test registered my tumor markers at 1400. 1400!!! Now they are 90. That is amazing. (A person without cancer is probably around 33) Holy shit!!! Can you believe it went up so high and is now so low. We are so excited!!!

The other test is the CEA and it went up to 775 in January and is now 64 (normal people are around 5). That is also amazing.

This current chemo plan is working!!! Hooray!!

CT scan was excellent. That is the 1st good CT I've had in a very long time. CT showed that cancer on both lungs and liver is going down. Before, the whole left lobe of my liver was covered and that cancer shrank significantly. There is one tumor on my right lobe that got bigger, and they'll watch it, but overall great scan. The radiologist actually used the words "considerable resolution" which has never happened. I was sobbing on and off for a week! I got the CT on a Monday and the nurse called me at 8AM on Tuesday to give me the good news. Once I got passed freaking out because she was calling me (usually means something really bad) it was a total love fest.

Bone scan was stable. There is a suspicious area around T5 but we'll take a look at that on the next scan. They aren't worried because I am not having any pain. Stable is good.

Brain MRI was clear. No active brain tumors, just pictures of radiated tissue past and even a couple of those got a bit smaller. Awesome!

Thanks for all the prayers and support. Please don't stop!

Love you all!

Laura

Vacation Feels So Good!!

The term this is your "new normal" always annoys me. Ok, pisses me off. I never asked for cancer and I don't like having a different normal from anyone else. Personally, I think the term is used better describing prison inmates. Here's what you get for killing and raping-welcome to your new normal and now rot to death. You screwed up and a "new normal" is your consequences.

I want to be able to do things that everyone else can do. So that's why we plan vacations and trips and fun times. That's what everyone does! So cancer, shove your "new normal" up your ass.

We are currently on an amazing road trip. The Goldstein trio drove to Georgia and stayed at the New Perry Hotel in Perry, GA our first night. Richard remembered this as a much more charming place to stay in years past and we got a big heap of local flavah with this one. The room was nice but the pool was green and the restaurant never opened for business. But we did eat at a heavenly southern place around the corner and the fried green tomatoes alone were well worth the trip.

Then we went to Six Flags Over Georgia. I used my handicapped placard for front row parking-yeah bitches but we paid full price to get in, which kills me because EVERYONE there had coupons or coke cans or something. Then we got an ECV (electronic convenience vehicle for those of you that don't know) so I wouldn't have to walk the park. Riding and conserving energy allowed me to ride as many roller coasters as possible. Yes, it's quite entertaining to roll up on your electrice wheelchair to the exit and get seated on a huge ass roller coaster, but fuck that. I'm here to ride some rides, bitches, and if I had to stand in line or walk a lot, we'd have to leave after 30 minutes. The Goldsteins were able to ride 8 roller coasters that day! It felt so good to get on there and scream my head off and experience the thrills with my family. It just feels good to be able to hang, ECV or not.

Then we went to visit our friend, Jennifer, in Cary, NC. The Lego Summer Tour happened to be in town and we got to stop there and see Lego things for Jake. We thought they would be throwing out swag like a real concert but in order to win prizes you had to sign your family up and participate in games onstage. The only open slot was 4 hours from when we arrived and that just wasn't happening, so the nice Lego employee gave Jake a cool keychain and we were on our way. We hit Trader Joes' before leaving town, of course, and I believe Jennifer and Trey might be new TJ converts--that is, if I did my job the right way. The highlight of our visit was meeting Bubba Dog face to face--what an amazing and awesome dog!

Then we met John and Devon in Williamsburg, Virginia. All of us went to Busch Gardens the next day with my friend from FSU, Lee, and his wife, Kim, and their kids. It was an amazing time. Another ECV and more roller coasters. Awesome.

The next day we went to Colonial Williamsburg. How cool to be able to step back in time and be back in the 1700s. I thought they were all actors there in costume but the trades are performed by real experts and all the stuff they make on site is used. It was amazing. Jake got to play a harpsichord and was awesome. He also brought his guitar on the trip and has been playing some amazing stuff for us.

Now here's where the "new normal" bullshit creeps in. The next day we were all packed up in the hotel and getting ready to go to Monticello 2 hours away in Charlottesville. At the free continental breaky in the hotel lobby I got a nosebleed that would not stop. This has never happened to me before but one of the chemos I am on can totally affect the vascular system and cause nosebleeds. After an hour of not stopping, we called the doctor in Florida. The nurse called back and said I had to go to the emergency room so the Williamsburg doctors could check my platelets. If they are low, maybe I need to get some platelets. So, shit, we had to drag the kids to the hospital-- tra la la.

The hospital in Williamsburg was awesome and took great care of me. Short version of story--doctor shoved a large cotton thing up my nose and then used a syringe to shoot saline up there so it would puff up like an enormous tampon. It actually had a string attached to it which she taped to my face. The nurse took blood from my port without any numbing cream or spray but she did say "big ouch" just before puncturing my skin with the large needle. The bloodwork came back great. The platelets were 79, higher than they've been the last few times I was in for chemo, which we had to skip. (This has given me good energy for the trip methinks) So we're getting ready to go and the doctor says she wants me to keep the face tampon in for 48 hours and when I get to Charlottesville, go to that hospital and have them take it out and shoot more saline in my nose. Hmmm... I don't think so. I was not about to walk around Thomas Jefferson's house with a big tampon in my face. Not to mention that my copay for an ER visit is $200. So we asked her to take it out there which she did. I've had a few minor nosebleeds since, but they all have stopped pretty quickly. Yay the body that heals.

This hospital fun didn't put us too far off our schedule, but since TJ's house closes at 5pm we drove to Charlottesville but went to Monticello the next morning. John and Devon left after that instead of going on with us to Shenandoah National Park.

Monticello was such a fond memory of mine growing up and I was so excited to go there with Richard and Jake and it was so cool to have John and Devon there too. This trip does make me miss my dad since driving around Virginia and historical sites was definitely his territory. I'm sure he is watching us with a big goofy grin of approval.

Shenandoah National Park was amazing. We saw deer running wild everywhere and bought a lot of stuff at the gift shop we probably won't ever use, but hey, we're supporting park preservation, no?

I am now writing this update from the library in Rehoboth, Delaware. We are visiting my cousin Dawn and her husband George and their awesome dog Smax at their beach cottage. It is awesome and definitely time for us to rest and relax at the beach and enjoy being with each other and Dawn and George. It is absolutely gorgeous here and I am so grateful for every moment.

We'll be back at home in a few days returning to our old normal from a new vacation normal... does that make my new normal an old normal with a twist? I'm very confused about what normal is really supposed to feel like.

I don't think anyone can say what is supposed to be normal for anyone else. You just take life as it comes and do best you can. That's all you can do. For now, I will enjoy this time and this trip and be as grateful as can be. Sorry if it reads a little like a family Christmas letter in July... I'm grateful for everything--especially you if you're reading this.

Keep praying and sending good thoughts--look at all of the things you are helping me get to do!

Love you!
Laura

It's My Birthdaaaaaaay!

It's my birthday month, my birthday month.... tra la la la la, it's my birthday month....

This is the song I sing to myself and my poor family every year. I don't get just one day or one week to celebrate the fabulous day I was born, I get a whole month. Dammit.

I turned 37 today. Last weekend we had our annual BBQ extravaganza with lots of people, food, drinks and fun and togetherness and that was the party. This weekend is about relaxing and feels very nice.

I am so grateful to be having another birthday. I don't mean to sound morbid or make anyone uncomfortable because I know my cheering section is full of "what are you saying? you are going to have a lot more birthdays" and yes, I would agree with you. I'm not disputing that. But something has to be said about just pausing and really taking it all in.

I was diagnosed with stage IV breast cancer at the age of 33. Growing up, hearing about that would have been followed by a death sentence. At no time has my doctor given me any projections or evaulations of time in my prognosis. She insists that I am not a statistic and stage IV is now considered a chronic disease rather than a terminal one. I am happy to fully support her statement and be literally living proof of it.

But there are still women dying all the time of stage IV breast cancer. So will I or won't I? Who the hell knows? I just take one day at a time and enjoy the shit out of my life and those around me. Isn't that what we are all supposed to do? I just love my life and can't worry about when it's going to happen. I continue to meet stage IV survivors that are 5 years out, 10 years out and every once in awhile you hear about many more than 10 years out. If I'm going to think I might die like other women in 1 or 2 years, it would be so unfair not to stretch the fantasy to include the possibility of being like the women who are 10 years out. So I try to keep my mind in the place of possibilities. And in the present.

On today's birth anniversary, I reflect on surviving for 4 years after diagnosis. That is just simply awesome. Especially because I have had metastatic disease in every possible place it can travel: brain, liver, lungs, bones and soft tissue. And here I am. Holy shit. Thank you God for letting me enjoy myself and my family and friends and for being able to express this gratitude to them through this blog. I hope they all know that I could not make it through one day of treatment without them.

Let's recap some recent miracles. My brain is stable and the spots they were watching are actually getting smaller. Last week we saw the doctor and she gave me a graph of my tumor markers over the last year. The numbers are dropping SIGNIFICANTLY now -you should see that damn graph. It peaks in January at some horrid number like 1500 and takes a straight drop down to somewhere around 100/150. Holy shit again. The doctor, nurses and I are doing crazy random happy dances all the time now. We are very encouraged that the current chemo is doing it's job. Yay Carboplatin/Avastin/Tykerb/Herceptin/Zometa. Thrice I say holy shit. If it keeps working and I tolerate it well, I could be on it for many months or even many years... all the while hoping for the next big thing to be discovered. That is what treatment is like for me. And it's all good. Very good. Hopefully I'll pull it together and scan in the graph so you can see it and post it here. Then you can see the joy of all the time the medicine is buying me and all of the blessings I get to experience every single day. If you are reading this, you are definitely one of my miracles, thank you.

As grateful as I am to be having this birthday, I wish I could say that the declaration of the "birthday month" was something that came after the cancer diagnosis and that I've earned it after having to take shitty chemo and go through all this inconvenience and fatigue and cancer bullshit. But alas, I subjected everyone to my birthday month well before cancer because I'm really at my core a selfish little bitch and everything is about me. I'm not proud. I am so grateful for this chance to be myself. It's my birthday month, my birthday month. Tra la la la la, my birthday month!

Muchos smoochos!

Laura

Now My Spine Glows In The Dark, Too!

Last Friday I had radiation on my spine. It took place on Lumbar 4 in my lower back. Previously, I was trying to spare you all of the agitating details of the day to day hospital visits but now you might be a little left out. I'm sorry for that.

I'll try to sum up. Dr. Ramakrishna suggested we do stereotactic radiosurgery on this vertebrae. It is much like what I've done on the brain in regards to it being only one treatment, one visit and it's done. He told me compared to the brain stuff I've done it would be a piece of cake. I said sign me up.

Then I showed up for an information session with a nurse getting me ready for the procedure. She started explaining that I was to get 5 days of standard radiation treatment and went over what to expect and the side effects. I told her the doctor told me it was to be one sterotactic treatment. She went to ask him for me. She came back and said the doctor said he told me I may get up to 5 treatments. Sure he did. I'm just the stupid patient, what do I know? Whatever works, let's just get to it.

Did I mention that I got my first tattoo? Well, tattoos plural. When you are getting multiple radiation treatments, the hospital puts tattoos on you so they don't have to re-align you and the machine every time you come in. There are three pinpoint tattoo marks on my body for my alignment. I went in for my tattoos before I went in for my information session with the nurse because that's how the schedule fell. How efficient to lie on a machine and get tattoos for a procedure in which you know nothing about.

After the information session with the nurse, she told me if "they" didn't call me within 7 days with the schedule for my first radiation to call in to the hospital and find out myself. I lasted 6 days before I couldn't stand it anymore. I was there last Wednesday for chemo and stopped by radiology to see what I could find out. They didn't know but called me later that afternoon. Can you come in this Friday for your stereotactic treatment? So, I'm only having one day of treatment? Yes. Ok, I'll be there. Whatever works.

Friday came and it was relatively easy. Well, the night before, I accidentally ripped the flesh off around one of the tattoos from the sticker that was protecting it. The tech, Bernadette, (who has been there for all my brain stuff and is awesome) thanked me for keeping my raw red skin in such a perfect circle so they could still line me up properly. Anything I can do to help.

I checked in at 11:30 am and they took me back at 11:40. They lined me right up, the doctor came in and said hello and suggested I just meditate or fall asleep and assured me he had a really nice treatment plan for me. I wonder how many times he's been able to sleep on a treatment table. They put The Temptations on the radio at my request and off we went.

I do have to brag about what a good patient I am in these situations. Small victories people. For 40 minutes I lied there with both arms over my head. They told me to try not to move because then they have to come in and re-align everything. I did not move, not one millimeter the entire time. I thought the techs were going to have a happy heart attack or something. Apparently, everyone moves. When we reached the halfway point, Bernadette came giddily over the speaker and asked if we could keep going instead of giving me a break. I told her my left arm was completely asleep, but what the heck, let's push on. I just lied there and Zen'd out--me, my spine, the tumors and the radiation-synchronicity baby.

I had no exit interview after the treatment and no one prepared me for what to expect after the stereotactic procedure. Thanks for lying so still! Have a great day. See ya! Luckily another girl told me she got diarrhea so I had that to look forward to.

My family and I went out to lunch but within the hour my body completely crashed. I went to sleep for the rest of the day and all of the night. This night was particularly tough because I also happened to have a UTI and a problem with hemmorhoids-all side effects from chemo. Friday night accumulated with absolutely no energy to stand, burning when I urinated and blood with every painful bowel movement. Then, as told, diarrhea started because the radiation hit that area of my body-what fun! We finally got the right antibiotic for the UTI and some meds for the hemmorhoids and all is well. Anyone that has ever been in a support group with cancer patients that have been in treatment for a long time could probably write a novel about poop problems. Personally, I've declared myself the Mayor of Poop Town. It's just one of those amazingly awesome things nobody tells you about when they welcome you to the cancer club. You just have to discover it on your own. But if you need the Mayor for advice, I'd be happy to hold a ribbon cutting ceremony and formally welcome you to Poop Town.

I spent most of the weekend resting and sleeping-thank God for the World Cup games. My energy level is still low but the other physical problems have subsided. I'll be back to my regular chemo routine Wednesday but for now I'm getting a bit of a break from the big stuff. No brain treatments, spine treatments or anything else outside the box. My next scans will take place the first week of August. I am super hopeful this medicine is working and the August scans will bring good news. Please keep praying that this will happen. I need every single one of those prayers.

Love you all!

Muchos Smoochos!

Laura

Finally Some Good News!

My brain mri results were excellent! Brain looks good.

The new spot they were watching to see if it was another tumor got SMALLER! Just let that one sink in for a moment. Overall, multiple spots they were watching got SMALLER as well. After months and months of shitty news, this is nothing short of miraculous.

I probably would have tongue kissed the radiation oncologist if he wasn't such a cocky guy. Well, and Richard wasn't such a much better choice to kiss. Dr. Ramakrishna came in and said, the brain looks good. I asked him about the new spot he said it got smaller. He said we don't have to do anything with your brain right now. Then he went on to talk about my spine, breezing over all that wonderful brain news. But didn't he know I wanted to lunge at him off the chair with the paper runner and shake him while screaming and crying----yeah! Fuck yeah! Get those fuckers! Yeah! Nothing more with your brain right now!

But I didn't. I sat there and smiled and felt the weight slide off of my neck, back and head. When I got into my car alone (Richard and I drove separately to the appointment) I was screaming and laughing at the top of my lungs. God bless all the other drivers on the road that acted like they weren't driving next to a crazy person. Ahahaahaaaaaaa! Mother fucking cancer-take that!

Back to the doctor's office--then we talked about my spine. Lumbar 4 needs radiation as it is covered in tumors. Dr. Ramakrishna ordered another mri of the spine to compare it to the last one and said we'd proceed with either one sterotactic treatment or 10 standard treatments. I'll skip all the bureaucratic bullshit and telling all my tales over the last few days of the left hand not talking to the right hand-quite frankly, I'm getting tired of talking about navigating through all the ridiculousity that goes on at a hospital.

Cutting to the chase... I am slated to have 5 standard radiation treatments on lumbar 4-yes, that's different from what the dr. originally said, but remember, I'm skipping all that bullshit. The treatment will be 5 days in a row for about 15-20 minutes a day. Then I'll be done. I'm told the only side effects will be fatigue and maybe some diarrhea. Ah, more poop problems... a topic for another time.

The radiation on my spine should be a piece of cake compared with what I've been through with the brain. I should be getting a call within the next 7 days letting me know when to come in and meet my radiation technician. Then I'll know the exact schedule.

I've been having some pain in that area. It's sporadic, but it's getting worse. Whenever I lie down a certain way and get up it hurts. After the radiation, that should all go away. This will also be great for our family road trip at the end of July-all that sitting and driving. Wheeee!

After the radiation, my next CT, bone & heart scans will be the first week of August. Ah, for now, it's just nice to get a bit of a break and get back to the routine called life.

I'm very hopeful that this current combo of chemo is kicking some serious ass. For now, I'm feeling good, living life and laughing a lot. Thank you all for you love, support and prayers.

Rock!

No Parking On The Dance Floor

I got a disabled parking placard.

I dragged my feet on this for a long time and only a few people even knew I was even considering it. I mean, I look perfectly fine and I have energy to be able to work full-time and still do normal family things like everyone else. I don't want to take any spots away from people that are in wheelchairs, crutches, and what not. But I gotta tell ya, sometimes I just need it.

On and around chemo days, I feel so run down that it's all I can do to run just one or two errands that we need. I didn't want to admit that I needed the placard. That would be admitting that I'm actually sick and I hardly ever feel sick, for crying out loud. Unless it's walking around a theme park... and that's only once in awhile so I could just act like all is normal and be like everyone else.

But I'm not like everyone else. I have to take poison once a week and take naps and plan my energy for activities in advance. I have to say no to a lot of things I'm invited to because I know I just won't have the energy to do it. People, that just sucks.

So don't judge me. I want it both ways-I want my cake and yes, I would like to eat the whole thing too. I refuse to be referred to as the "sick" girl but if you see me getting out of a disabled spot there is a good reason. I don't give a shit what strangers think-they'll give me dirty looks no matter what, but my friends should know I have good reason to use the placard. I won't abuse it, really. But if you'd like to invite me to large scale concerts or sporting events, let's use it! Dang, I just gotta check my energy level first. :-)

-----------------------

Brain MRI results with Dr. Ramakrishna tomorrow. We'll talk about the brain and when to radiate the vertebrae located at L4. Fun times. More updates soon. Tra la la!

Meeting Mets Magic

The weekend of May 1st and 2nd, Richard and I took a trip to Philadelphia for the 4th Annual Metastatic Breast Cancer Conference, organized by a group called Living Beyond Breast Cancer.

I was very lucky that both Richard and I received travel grants to be able to attend this conference. It was an incredible experience to have Richard there with me as I listened to health care professionals, and others, that affect the cancer "trip", as well as meeting some amazing breast cancer warrior women. It was so much better to have him there with me then to try to tell him about things later. He's a great person to bounce my thoughts and fears off of as we were raking in the intended conference information.

There was an overview of the progress being made regarding mets specifically and what to look for in the future. We attended the bone mets workshop and came out with lots of new questions to take back to my doctors. On Sunday, I went to the lung & liver mets workshop while Richard went to the caregiver workshop. We both got something out of each workshop and were glad to have attended for the information.

More important and more exciting though, were the women that we met that weekend. I found that most women had my sick, sarcastic sense of humor, making jokes about cancer that would make the cancer civilian completely uncomfortable. We talked about the same worries and fears and laughed about similar medical stories and misinformation. It was a familiarity that is similar to those old friends everyone has that no matter how much time passes, you can pick right up where you left off and it feels like not a moment has passed. I cherish all of the women that shared a part of themselves and their story with us.

Two amazing women-Tricia and Andrea-rocked our world. We all went to dinner on Saturday night and talked for hours. Tricia was nice enough to drive us to the airport to save us money on Sunday and we loved having the extra time to talk. Andrea and I had a lot in common by way of energy medicine and other experiences, and Tricia was just such a great person to talk to. I love these women! Cancer gives so many shitty gifts but it also brings wonderful people together that would never meet otherwise. So many blessings around the bullshit.

All in all, it was a wonderful conference. It was smaller than the YSC one and had a much shorter schedule, but that's because YSC has been around 10 years and this one was 4. I am hoping that the mets conference keeps growing so it will be jam packed with things to do in the future. Mets women out there unite! If you are feeling good, get out there to that conference!

__________

Medical update-the Thursday before the conference, had an MRI of my pelvis, spine & neck. Dr. Ramakrishna wants to radiate L4 on the lumbar section of my back. It's not urgent, so we're just going to chill out for now. I'm going to see Dr. Ramakrishna again in 3 weeks for my brain follow-up and we'll talk about it then. I won't bore you with the ridiculosity that was how we were told there was a problem with my lumbar. This is more about the amazing conference we attended. But it is so important to be diligent and do not let some amateur nurse covering for your normal nurse try to give you medical info that they shouldn't. Stand up for yourself and do not accept anything but professionalism from EVERYONE.

Happy Mother's Day to all-especially the amazing doctors and nurses taking care of me! Yay! Thank you for you!

Getting my mojo back

The last post was written from a dark place and I am happy to report that I feel like I've gotten my mojo back people!!

Yes, I allow myself to go to dark places because if I don't, everyone knows it will eat me up from the inside out. There are many many emotions going through all of this and none of them are wrong. Not even my perpetual optimism.

Cancer is the ultimate mind fuck.

Last Saturday I was taken care of by some amazing women. My friend, Gina, allowed me to come into the salon where she works and she cut, colored & highlighted my hair. I got the full salon treatment. She is amazing and magical and that is why I say she is a maGina! She has super powers! I felt and looked so much better when I left but I needed help on the inside.

Then I went to Massage Solutions where Jana picked up where the outside stopped and the inside started. She did some massage and lots and lots of energy healing. She helped me scoop alot of the mental darkness out of my head and my heart. She re-connected me to my spirituality and faith-I was praying so hard and crying out for help-trying to do it all on my own. This is an understatement, but I left a completely different person than when I arrived. Jana even said I had the life in my eyes back. I cannot even describe the weight that was lifted that day.

I am so grateful for these women and everyone out there that helps in both small and large ways. Every prayer, every post, every positive thought my way is helping. Thank you!

For a few days, it was so hard to even remember that the Lord is with me always. It is so hard to fight and be lifted up by so many prayers around the world, but to see no evidence of healing. But that makes me a horribly bratty, ungrateful child of God. The truth is that I have experienced tremendous healing through all of this. My family is closer. Physically, I was spared a mastectomy (although if it would have gotten rid of it, I definitely would have been grateful to do that). The time I couldn't walk from bursitis is almost completely healed, minus a dull achey pain in the general area. The fact that I can do radiation to fight the brain tumors, is a gift. The cancer covers one lobe of my liver, but does not affect it's functionality. Same goes for my bones and lungs. So, you see, I have experienced a lot of healing thus far. I look forward to God's healing powers and gifts to come. Love comes from God and fear does not. Dr. Evil keeps trying to take my mojo, but I got it back. Yeah baby!

Friday, Richard and I will be leaving for the weekend for Philadelphia. There is a metastatic breast cancer conference being put on by a wonderful charity called Living Beyond Breast Cancer, along with many others. It is the 4th annual conference and there should be at least a couple hundred women that are all stage IV like me. We are hoping this will be extremely uplifting and educational and fill my arsenal with lots of artillery for the fight. Fight! Fight! Fight!

I'll report back after the conference.

Muchos Smoochos!

Scan results are in!

Hello friends of Cancercopia!!

Today was the dreaded scan result day, my usual 3 month check-in on the current chemo in a month that has been anything but usual.

We were cautiously optimistic this time, but optimistic nonetheless because of the significant decrease we saw in the tumor markers.... that's why man does not live on tumor marker blood tests alone. Apparently they were not a good indication of what was happening inside my body.

The cancer laughed at my chemo, Gemzar. It was a big, hearty bellow laugh, followed by deeply bellowing "is that all you got?"

The cancer grew pretty much everywhere in my body. Now, this is separate from the brain, as now we are looking at everywhere else so bear with me. I'm supposed to not worry about my brain until the end of May when we check in on that with an MRI and doctors appointments with my dueling specialists.

The radiologist reading my CT scan prefers the word "nodule" to "lesions" and it just depends on where they trained on what they call them. They are what they are-little nasty bitch cancer tumors that need to be schooled and fuck off and out of my body.

If you would like to see my ranting on what pussies the radiologists are on these reports, I'm sure you can find that in previous posts. I just wanted to say it again in case you are looking for more specific information (which I always am). I don't want you to think I just left it off of my blog. The information just isn't there in the readings, many times sounding non-committal and it's common knowledge that it is because they are afraid to be sued. Today I sang a rousing chorus of "Mamas don't let your babies grow up to be radiologists"... that just read scans all day... they suck... if they are gonna be a radiologist let them actually radiate people and not do BS transciptions... but I digress.

Here are a few excerpts from the scan readings. My medical friends out there have to forgive me if my interpretations are wrong. I'm going on part Google (oh, the horror-don't Google medical phrases as they relate to you as a general rule) and part what I think I remember from conversations with the doctors. We never go line by line with the doctors. They get an overview, give me the overview and we talk about the next step in treatment. It's just frustrating that all my medical decisions are based on these readings and for the most part the doctor reading it is just answering the bare minimum of the question-is there progression of disease? Instead of is there and how much? So here's what it looks like---

Radiologist vs (me):

There are new additional hepatic (liver) masses. (oh, now we're calling them masses) Almost complete left hepatic replacement. (left lobe of my liver is covered in cancer-that's been the same on the last few scans-nothing different here except that he says there are more "masses" but not how many more or give any indication of the growth vs. the last scan) Spleen, pancreas, adrenals negative. (hot dammit) Kidneys negative. (woohoo) Negative adenopathy (large or swollen lymph nodes indicating inflammation, infection or disease-wow then how the hell is my cancer traveling around to all the major hot spots in my body without enlarging my lymph notes? Just curious)

(He did get more specific regarding the mass on my sternum) I see soft tissue component anterior, and deep to the sternum. It is relatively a large mass. (holy shit! It's so big he made a comment on it) The anterior soft tissue component is as large as 5.7 cm.

Extensive new pulmonary (lungs) nodular (back to nodules) disease. Under a centimeter in size and seen in all segments of both lobes (that's both lungs-yeah, baby, I do things 100%).

Impression: Progression of disease. New extensive nodular metastatic disease to the lung. Extensive soft tissue neoplasm (group of cells that make a tumor) is seen associated with what is felt to be sternal metastasis.

Bone scan radiologist is better, naming specific vertebrae that are now lighting up the screen. She (wow, it's a woman that reads the scans better-go figure :)) mentions specific spots: T6, T9 and T10, T11 and T12. Progression of uptake in the midsternum with new uptake in the right sacral ala (wing on the triangle part of the sternum).

Impression: Compared to prior bone scan of 9/4/09 (yes, it's been that long since Moffit wasn't concerned with me having bones scans-yum) there is definite progression of skeletal metastases in sternum, thoracolumbar spine and sacrum with multiple (how many dammit!?) new lesions identified.

Ok, so I just wanted to give you a little peak of what the scan results are like. Admittedly, these are better than some of the earlier scans. Especially when the bone scan would say "possible disease or arthritis." Those were my favorite. I guess the cancer is showing up in so many places now that there's no question of what it is on the tests. One other bit of good news-heart scan was very good-my heart is perfect. :)

My best guess is that my brain was taking some thunder away from the rest of my body so that cancer wanted to make sure we gave it some attention. Spoiled little brat bitches.

The doctor is very matter of fact in these instances and just went on to describe the next course of chemotherapy. I started Carboplatin today which is a platinum based chemotherapy agent (platinum is what kicked Lance Armstrong's cancer so that's good). It is from a family of meds that we haven't tried yet and Dr. Shah is hoping it will throw the cancer cells off and we can knock the shit out of them. Go team go!

I am still on Tykerb and Herceptin for the Her2neu protein (that's just for the breast cancer folks out there) and Zometa for my bones.

Here's the interesting addition. Dr. Shah added Avastin to the mix to take care of my brain. Hmmm. I thought that causes brain bleeding. She said it only does that within 2 weeks of the brain radiation procedure and she checked with Dr. Ramakrishna and he was on board with me getting it. Wow, that was a suggestion of Dr. Bobustic--Stop the presses. Dr. Shah says she has to sit them down to get them to play nice and she has. So, they'll add Avastin in with the Carboplatin next week. If I experience any neurological symptoms such as dizziness, trouble walking and with balance, speech, etc. it could be a sign of brain bleeding and I should let them know immediately. Yeah, well, duh.

We had a long talk about Dr. Bobustic and Dr. Ramakrishna with Dr. Shah and she explained certain things that helped clear up some of our confusion, along with expressing a bit of her own. She is a very good referee. So, I'm not going to meet with the administration just yet, but at the end of May, when our attention turns once again to the brain, I will have something very specific to tell the administrator and I have a direct line to the administrator's office. I'm just putting it on hold for now and will pick it up again later. Definitely a hot button issue that I will not drop because being your own advocate is so important.

As a side note, and I know vanity is not important in the fight for your life, but there is a bit of a hair debate regarding the new chemo. The nurse practioner said I would not lose my hair. The doctor said I would. We like to ask them separately in the office to see the response. It's part of our sick little patient game and makes us giggle. I just won't be running out and buzzing it all off for now.

Bad test results are just a part of the cancer bullshit. This is what Dr. Shah told me from the beginning-that there would be ups and downs and it's just part of what I have to deal with. Just par for the course, I guess.

April and the last few months have been quite the shitstorm regarding my cancer treatment. However, April also marks my 3 year Cancerversary--that is, 3 years from diagnosis. I am so happy to be here. I am so blessed. I know that. But I'm not superwoman, people, I've been crying all day from these test results and trying to keep my thoughts from leading me to dark places. I am so very tired of being in treatment in 3 years-both figuratively and literally. Then I bounce back to feeling lucky that they have the doctors and the medicines to help me. I'm a walking freak show, bouncing from gratitude to fear to anger and back again. It's all part of the show and totally normal, but hey kids, don't try this at home.

Please keep praying because I know that it works. Pray that this new medicine kicks some serious nodule ass.

Love and muchos smoochos!!

Laura

Squeak Squeak I need some grease!!

Greetings friends of Cancercopia! This is brain radiation #3. It is the 2nd procedure I had to have in a month. Notice that the halo has been changed. This one was much more lightweight and easier to wear all day. I think all of the most fashionable survivors will be wearing it this Spring.

Procedure #3 went much more smoothly than #2, further proving that there was something wrong and/or different that happened in #2. Proving even further that when I was calling the nurse to tell her that something was wrong, the medical staff did not appropriately listen to the patient.

Now, it's true, I argued with Heidi several times and she always shut me down when I was trying to tell her that my head was NOT supposed to be numb for a week and a half after this procedure. Right before #3, we met with Dr. Ramakrishna and told him I was terrified about procedure #3 because #2 was so hard to get through. He listened to what happened and acted like this was the first time he heard that something was wrong. He said he'd talk to the neurosurgeon that places the halo on my head and we'd try to figure something out because it should be just a day or two of recovery time. No shit. Somebody needs to figure out if I was given too much numbing juice, or the halo screw went in too deep, or into the wrong nerve-something! I promise I won't sue, just do it right this time.

My arrival on Monday morning at 5:30 AM was full of anxiety, but my favorite check-in gal, Elaine, was there bright and early. I told her some of my concerns with the communications I was having with Nurse Heidi and she said she would give that feedback to Nurse Tammy. I was so relieved that Tammy was there again to take care of me.

So, I'm all checked in and Heidi shows up to help Tammy. Tammy told me she wouldn't give me the happy morphine juice until the neurosurgeon showed up and I voiced my concerns to him directly since my concerns had not been relayed before. It was 6AM and once again, I brought up to Heidi that I thought there was a problem the last time and was terrified. When I described the numbness problem she apologized and said she misunderstood and probably didn't communicate what was going on with me. But when I said the doctor did seem like this was news to him, she said, he was sitting next to her the whole time and was telling her what to say. That I believe. I started to soften a bit toward Heidi because I cannot believe it is easy to work for Dr. Ramakrishna. When we were meeting with him one on one, we told him about some miscommunication with Heidi that we had. The man didn't even stick up for his own nurse. He pompously started going off on the annoyances of "secondary staff" and how he wished he didn't have to deal with secondary staff and could just work on his papers and books all day. This made the doctor sound like a total jerk but hey---if the doctor is one of the best in the country, he can be a jerk as long as the procedures work-isn't that a bitch? The nurses however, must be empathetic and LISTEN TO THE PATIENT without being a jerk. So glad I'm not a nurse.

So, there was a little bit of the squeaky wheel getting the grease on this one and procedure #3 went 1,000 times better then #2. Finally, when Heidi called to check on how my pin points were healing this week, finally did she agree that perhaps something out of the norm happened the last time. Now, that wasn't so hard, was it?

The best part of brain radiation day came toward the end. Well, with only one tumor on the schedule, the procedure went quickly and I was finished before noon. Then since Nurse Tammy knew I was having some challenges with Heidi, she grabbed another nurse to help take the halo off. It was the ultimate cock block and I loved her for it! During #2, there was all kinds of pain while the halo depressurized and I was never good enough at physics to explain why to you in this blog. When I screamed out that it felt like something was squeezing my head, Heidi said that she was looking at my head and nothing was squeezing it. Not helpful while you are crying out in pain, let me tell ya. So this time, even though the halo came off with much greater ease, there was another nurse there helping it along. Aaaaahhhhh. Follow-up MRI will be end of May-8 weeks later. Hmmm. I'm not supposed to worry about my brain until then.

Once again, I rang the bell symbolizing that my radiation treatment was over. Once again, the nurses and laser technicians rallied around the bell and clapped and cheered for me. Golly gee, wouldn't that have been awesome to be the last brain procedure I have to have in a long time. But alas, that does not seem possible.

Apparently, during the procedure #3, Dr. Ramakrishna pulled Richard aside and told him that another spot had showed up on my brain scan, but it was too little to treat. He said it was too small to treat (2mm) and we would watch it and encouraged Richard not to mention it to me until later. Richard told me a week later. Damn it, brain tumors. Simmer down in there, for the love of God!

Yet another hurdle to get over was last Monday's colposcopy follow up to my abnormal pap smear. Dr. Vaught is incredible and totally gets my wacky sense of humor. She immediately put me at ease, even though she admitted that she did not follow my directions of not calling me if there was an abnormal pap smear. I specifically told her that I couldn't handle much more in my cancer "journey" and not to call, but they called anyway. The nerve. When Dr. Vaught came in she said I was on the low end of "abnormal" (insert joke here) and that she really thought it was because of menopause.

During a colposcopy, they insert a camera into your cervix and take a look around. If they see anything suspicious, they snip off a piece of the inside of your cervix for a biopsy. Doesn't that sound like a gas? Well, the camera wasn't hooked up properly to the tv screen that Dr. Vaught needed to explore my insides so they went to get somebody else to help with their little A/V problem. Then somebody else. There I was sitting with a sheet draped over my naked ha-ha while people came in and out of the room to check cords and connections. Only me, I tell ya.

The good news is that Dr. Vaught saw nothing suspicious-no white spots which would indicate pre-cancerous cells or anything else that would spin me out of control into the great cancer universe. Dr. Vaught didn't see any reason to snip off any tissue, but gave me a thorough scraping over. All seems pretty right with this procedure. We'll find out the results in about 2 weeks, whenever the lab my insurance pays for decides to get around to it. Our marriage has once again been taken to a new level, as Richard got to see the inside of my ha-ha blown up on the tv screen all mushy and pink. The man is still here, and I'm grateful for that. :)

After the colposcopy, I talked to Dr. Shah's nurse for awhile because we left her a note asking to add Avastin back into my chemo, which was Dr. Bobustic's suggestion. I was on Avastin before stopping for the clinical trial and the Avastin was keeping things out of my brain. Dr. Shah doesn't want to because with active brain mets it could cause bleeding in the brain. Dr. Bobustic didn't mention that. The nurse said that since what Dr. Bobustic suggested wasn't published anywhere and that Dr. Shah would like to talk to Dr. Ramakrishna to get his opinion. We asked, so once again, are we supposed to ignore what Dr. Bobustic says? Is that what everyone is going to do? We are so confused and this creates a lot of anxiety here as a patient in the middle. One brain specialist wants to treat my brain with meds and one brain specialist wants to treat my brain with rads. The tumors keep popping up so what do we do? They are in the middle of their own little pissing contest and we feel stuck. It is not a fun place to be. That was Monday.

Today, I went to chemo, as I've done many times before. Right after my port was accessed and we were waiting for the medicine to arrive, I started to cry. Sobbing, uncontrollably in the chemo chair. That hasn't happened to me since the beginning. I had no idea why I was crying and was pretty sure I was entitled to have a moment. Hell, most people tell me I should have more of these moments. But I really could not explain why I was crying. Nurse Ellen asked if I wanted to talk to someone and I asked if Michelle, the social worker, was available. She is awesome and came down right away.

We haven't really spoken deeply with Michelle since I was first diagnosed, but like her so much that we always stop and chat in the hallway when she goes by. I cried and cried and talked. She made me feel normal again. I was crying because all of these things were happening at once-this is my 3 year cancerversary month, the brain tumors, the abnormal pap smear, my scans. I'm overwhelmed. We talked about the anger I feel about the clinical trial not working and the mistreatment I faced at Moffitt. We talked about the anxiety and pressure the brain specialists give when they aren't on the same page. Everything. Chemo, hospital smells, sleep, work. I felt better talking it all out with her. And she suggested a head administrator I can talk to about my little doctor problem. I have an appointment next Thursday. Her advice IS that the squeaky wheel gets the grease and that I need to squeak. I have to stick up for myself and let someone know this is unacceptable. Damn skippy, I'm gonna do it.

Tomorrow is the bone scan and ECHO. Monday is the all important CT scan. Hopefully the Gemzar tumor markers falling was a preview of good news to come. I'll meet with Dr. Shah on April 21st for scan results.

Keep praying and sending good thoughts my lovelies. I think of you every day and would not be able to go through a minute of this bullshit without your support. Much love!!

Is 3rd Time The Charm?

Here is the halo picture from brain radiation # 2 on February 8. This treatment involved two tumors. I started at 5:30 AM and the actual procedure took place around 3:30 PM.

Two days after the brain radiation, I had my regularly scheduled chemotherapy appointment. This turns out to have been a mistake. # 2 took weeks for me to get my energy back and was a lot harder to get over than #1. I will not make that mistake again.

So, we got the MRI results from #2. There is a new tumor that has popped up. It was on the previous MRI but at the time, it was only 2-3mm and too small to treat in #2. In the 6 weeks while we waited, the little tumor fucker grew to 8mm and now is big enough to treat.

Dr. Bobustic suggested we wait and watch and add Avastin back into my chemotheraphy regimen. Dr. Ramakrishna suggested we treat again for # 3 and zap the fucker. I cried hysterically because I did not want to do this procedure again. Not to mention that I felt like I was in the middle of my personal pissing contest between the doctors. We showed up at Dr. Shah's office for a 3rd piece of advice but she was in Mexico. A well deserved vacay, but not helpful in the moment. Frenchy, her nurse, contacted the oncologist on call, Dr. Baitas, who agreed that I should go for radiation # 3. Apparently, if the tumor keeps growing, we might miss our window of opportunity to be able to treat it.

# 3 is scheduled for Monday. I am completely terrified. It feels like I'm being dragged into a vicious cycle. Tumors popping up .... more treatment... when does it end? Do I have to do this shit over and over again?

I really don't want to wear the halo again and #2 was so crappy in the recovery. Again, I've lost my mojo. I keep crying randomly and I'm utterly exhausted. I'm thankful that they have the technology to zap these fuckers but I am so very tired of challenge after challenge.

I've also figured out that one reason I'm dreading # 3 is that Dr. Ramakrishna's nurse, Heidi, is completely agitating. She is probably the only nurse I have ever met that has no empathy whatsoever. I tried to talk to her 3-4 times about the longer recovery time and that my head was numb for over a week when it should have worn off after a few hours. She has been nothing but argumentative, dismissive and condescending. When I told her that I am the patient and I'm trying to give her feedback and she completely blew me off. Added to this is that when we met with Dr. Ramakrishna he was very eager to know why #2 was harder to recover from than #1 and wanted to talk about how to make it better. Obviously, his nurse never gave him the feedback that I was having a hard time with the recovery.

I've been completely agitated by this nurse and then I realized something. Hey! I'm the patient! I have rights and I don't have to deal with staff that stresses me out. So, on Monday, after we check in at the ass crack of dawn, I will communicate with the staff that I do not want Heidi in the room when the halo comes off. I also will ask if there is ANYONE else that can be my point person if I have a problem after # 3.

On top of the stress of # 3, I had an abnormal pap smear and have to go in on April 12 for a follow-up. Sorry if that weirds out any guys reading this. This happens to lots of women and is pretty common, but I'm having a hard time keeping it together and not worrying that they are looking for cervical cancer on top of everything else. Just breathe. I'm sure it will be nothing. Later that week, my three month scans will take place. We'll meet with Dr. Shah on April 21st for the results. At least we have that to look forward to since the tumor marker numbers dropping is a good indication that the Gemzar is working.

I just need my brain to be stable again. And well, remission would be fantastic.

Please pray and send positive thoughts which will help me get through the next 3 weeks. I know I can get through it with your support. Thank you for everything!