Forging ahead

Brain MRI was normal I found out on Wednesday. I started my fast Tuesday morning and it was fine. Hunger was my constant companion all week and it was a little daily reminder that I am doing all that I can to beat this disease. I found a way to incorporate Dr. Conklin's many, many supplements. I replaced half of the L-nutra energy bar with his Klean Athlete protein powder in the mornings. I even added in a kombucha drink (in addition to my normal probiotics) that had lemon and cayenne to help with cleansing my organs during the fast. Had another infusion on Friday. Counts were borderline but I'm pushing through. Will check in again on Wednesday to see how my counts are because I may need a neupogen or neulasta shot to boost my counts to continue treatment on Friday. The cold is lingering. It's mostly just a mild cough here and there. Who knows what is going on with the salmonella thing. I don't have any feedback from the most recent samples. I should know next week. I need to keep pushing through so I can take a spring break vacation and continue with the last session of the third cycle the Friday I return April 4th. I need to be resting more but I haven't found it in me. I just find myself wanting to live life to the fullest instead of slowing down. I know this is a fine line to walk. I promise I will rest in a little bit. As soon as I am back from a little adult trip with the husband.

XOXO

A box of biscuits, a box of mixed biscuits and a biscuit mixer!

It's been a whirlwind few weeks. I've been too preoccupied with daily life to sit down for an update. I guess that's a good thing. Things are plugging along...

I was scheduled for chemo on Friday and then scans the following week of the 10th. Philomena moved up my scans to the past week, on Wednesday, because she doesn't like that the tumor markers keep rising (and neither do I)...

There were some issues getting an accurate chronological picture since I had a full PET/CT in September but a CAT scan in January (because insurance won't cover a full PET/CT each time), and just now on March 5th a full PET/CT. Philomena was confused by the reports because they couldn't show an adequate depiction of what was going on. They had to compare the September PET to the March PET but that painted a dramatically different picture that wasn't great. When David and I first got in the room with her on Thursday afternoon, she didn't seem too pleased or sure of the results. During my visit with her, however, she got the nuclear radiologist on the phone to get a more accurate interpretation of the results. After her conversation with the radiologist Philomena's whole demeanor changed and she became very matter of fact and direct about what our plan was going forward.  

The scans showed mostly good results, bone lesions have dramatically improved (words from the radiologist), the right lobe of the liver has improved but there is progression on the left lobe of liver. That could explain the tumor markers. However, you know how she is, I'm getting a brain MRI since I haven't had one since December 2012. She's wondering if there's a little spot or something on my brain (!?!?!?) that the PET/CT doesn't cover that could explain the tumor markers rising. I'm not having any symptoms so she just wants to cover all the bases. I don't like waiting around for these kind of tests so I scheduled that ASAP...

Good news is that I can continue on this treatment. She actually told the radiologist "I am trying to see if there has been enough improvement since the last scan so I don't have to throw out this treatment plan"... The consensus was that things were looking better. To be fair, I did have that whole hiccup with the salmonella so that threw things off and I didn't have two straight cycles before the scans so she says overall it's a very favorable result. I have never been more excited to do chemo than I was this past Friday. First it was off then it was back on with a fury. Thankfully whomever does the caps didn't get the memo that it was cancelled so they were already in the freezer waiting to go...that's one mistake I can live with and appreciate.  It was meant to be! 

Her thoughts are to continue on the Abraxane.  Most people don't get their scans until after three or four cycles. Philomena is being very cautious. I think because things went a little nuts on the Afinitor/Aromasin combo. I hate those fucking drugs. They are the devil and I felt like they were fertilizer to the cancer. I'm hoping that getting more of these treatments under my belt will start to knock the rest of the lesions out of the park.  Philomena is also going to talk to Mark Freedman, the liver MD over at Cedars to see if the left lobe liver lesions (say that five times, real fast) are candidates for radio-frequency ablation. She says this often happens where most of the tumors will be responding except for one area and those she tries to remedy through radiation or another method if possible. Stay tuned.

I will start fasting again tomorrow for my infusion this Friday. I'm doing another weird schedule again so that I can go away with the family for spring break. It means that once again I will do two weeks of the third cycle, a week off, then come back to complete the last week. This, of course, only works if my blood counts cooperate with my plans. I do feel that the fasting is helping. I know for sure it is helping with the side effects, I feel less tingling, less nausea, and have more energy after chemo when coming off the fast. I am also secretly hoping that it will help with the efficacy of the chemo overall. I feel like I am in a race against time trying to zap these tumors before they outsmart the treatment and start to develop immunity.  This is what happens at Stage IV - you work by trial and error to find a treatment that will work and then stay on it as long as the tumors keep responding, either by shrinking or remaining stable, before the cancer "gets smart" and you have to switch to another. The difficult part about switching to another is that you only have so many "tools" in your tool belt and as you use up one you have to retire it, thus limiting your choices in the future (although not always). 

I am continuing with the penguin cold cap therapy for the hair. It has been working. I have one larger spot near my ear that is bald and shedding more than normal hair loss but overall I have hair. At first I started doing this so that things would look normal for the kids. I now realize that I am also doing it for me. When you shave your head and/or lose your hair and look in the mirror, you see a different reality that what you are use to. It makes me feel more sick. If I look the same, if I stare in the mirror at the normal me I usually see then everything kind of feels the same. No wigs, no fuss, no hats. It does take more time, make you numb and cost more money, those are the drawbacks. Most people I have talked to that have done it would do it all over again though.

I had the brain MRI this afternoon (Monday) and the process went fine. The unfortunate part was that they couldn't use my power port and used my left arm (which is the no poke zone but since I've used it in the past with success I kept my mouth shut). I asked to see my images and I'm no radiologist of course but I didn't see any spots that stuck out, white or black with or without contrast. We'll see if they come back with something different in two to three days. I'm not going to think about it until I have to.

Insurance is a nightmare...ever since the new Obama Care changes I have had more and more things not be approved on the SAME insurance we had last year. I had the scans on Wednesday. Empire Blue Cross/Blue Shield called to tell me TODAY on Monday that the scan was denied. OH, really?! WTF.

In other fun and interesting news, I have been reported by Cedars-Sinai because of the salmonella (did I write this already?) and have to produce samples until I clear it out of my system. The samples from two weekends ago (right after I finished the antibiotics) were mixed. The first sample was negative and the second sample was positive. That means I have to keep giving weekly samples until I report two consecutive weeks of negative results. The Public Healthy nurse told me it could be a few months before it effective leaves my body because it "likes to hide in the gall bladder". UGH. Picture that. Peek-a-boo, I'm salmonella. Want to play? As if I don't have enough going on!! But they don't want to endanger the health of the public. I'm a danger to the general public. OMG. And I got Leo's cold. I severely dislike being immune-compromised. Let's get this health back in check ASAP.

To my other moms and dads out there, you'll appreciate that I no longer have the ear worm of "Let It Go" stuck in my head at all hours of the day and night. Ever since we watched the Lego Movie it's all about "Everything is Awesome"...everything is cool when you're part of a team...everything is awesome...when we're living our dream. Yeah, everything is awesome. I'm drinking the kool-aid. 

Keep on fighting!!