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!