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. :-)

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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!

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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!!