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!!