And she was all like "meh" and I was all like "yeah, meh, too"!!

I haven't posted in some time. Mostly it's because I haven't had the energy. I've been sleeping a lot more and I don't just mean resting. When I go upstairs to lie down during the day I fall asleep hard and fast. This latest battle with chemo should be filed under the most difficult thus far. My counts are constantly out of whack despite blood transfusions and neupogen shots. I originally was scheduled to have the carboplatin/gemzar combo for three weeks on and one week off. Per my last post, I was only able to do two then the counts tanked and after two weeks off (and two other additional attempts) I was finally able to get chemo the third week. By that time however, my tumor markers started rising again slightly.

Tumor markers continued to rise so I had to repeat the Liver MRI even though it's only been ONE month since my last one. That is a sign of the times. Everything is done with a tad more urgency and seriousness. Headache? Let's get a brain MRI. Bone pain? Let's repeat your bone scan, you haven't had one of those is six months. Constipated? Let's x-ray the abdomen and check for blockage. Got a scratch? Let's call in a script for bactroban and some antibiotics. Nausea? Let's push some IV anti-nausea meds. I still refuse most things when I can. I already have all this poison running through my system so I'd like to be as natural as possible any where else.

What have the side effects been from this current treatment? Other than being very tired and low energy I am constantly nauseous and/or constipated. The inability to rely on any true chemo schedule has made fasting impossible. The new schedule of one week on/one week off also hasn't worked.  After the third treatment and two weeks off I wasn't able to have chemo that week and had to have it pushed to this past week. I was finally able to get the fourth treatment on Wednesday June 25th. How is that for an erratic schedule? So if I had fasted last week then it would have been for naught. And I can't be expected to fast every week, right? I've decided to put fasting on hold until I can get to some kind of consistent schedule. I still fully believe in the benefits of fasting. When I get time I will post the fasting schedule and regimen of what I did since several people have asked me for it.

I have also been experiencing major bone pain in my legs, hips, shoulders and back. Some of that is attributed to my infrequent and inconsistent work outs that I try to do whenever I get a spurt of energy. I made it to ballet two Saturdays ago and my body paid for it for over a week. I think that pain is a result of being out of shape, wanting to do something my body probably shouldn't, and pushing myself because I feel, on some level, that I should try to battle through this like an athlete. You know, like Lance Armstrong in his book "it's not about the bike" - yeah, apparently it was about blood doping. Anyway, the things I know my body likes and doesn't react badly to are yoga, walking, and swimming.  As is often said, it's best to "listen to my body" but darn it I love ballet so much more and wish I could dance. I wish I could be stronger like I used to be in these classes. I'm almost able to releve on my right ankle that I sprained back at the end of March. I'm so close but so far. It's just beyond my reach…and mentally that really hurts. It's a little bit of spiritual anguish too.

At some point in life, most adults come to a point where changing or shifting just isn't possible. We don't start out that way. I'm  talking about how right out of college you think you could conquer the world, then a few years later still have the ability to change your career or pursue something untraditional. At a certain age or a certain shift in your life perspective you realize you can't just change things on a whim. That is a sad day. Before I was diagnosed I kept thinking about getting back to work and doing something that I loved to do when the kids were school age. Abby starts kindergarten in the fall and my job has become that of a cancer patient. I am working so hard to get well and stay well. Some days I feel like I could go back to school and pursue medicine. Except it's not my passion. This new hobby is out of necessity. To be my own advocate. I'm still researching new treatments, trying to meet with new doctors and explore different options. I'm going twice a week to acupuncture. I'm going twice a week to physical therapy - split between my ankle, the cording in my right arm from the port and the tightening of the soft tissue and muscle post-mastectomy and radiation that is pulling on the left implant. I'm constantly doing something to try to make myself stronger, more agile, more normal, more….ME, back in the old days. It's a real bummer when you wake up in the morning and you don't recognize yourself. When you walk up the stairs to grab something quickly that you forgot and need to stop half way from being too winded. HOW DID THAT HAPPEN? When did I get so out of shape? How do I stop my health from slipping away?

My girlfriend Stefanie has stabilized and potentially shrunk away the cancer from her third metastatic recurrence using help oil. Hemp oil is cannibis oil. Marijuana, you dig? This is an area where I haven't done enough research. However, I did try it in the past to help me sleep. It's not like ambien knock-you-out, it's more like knock-you-out-and-if-you-wake-up-to-pee-in-the-middle-of-the-night-well-GOOD-LUCK-walking-to-the-toilet-while-seeing-stars-through-closed-eyelids OUT. Stefanie has been having great results and is becoming a huge advocate to the cause and has been suggesting (gently) that I get on the program. The catch is that people in the "industry" recommend that you not be on any traditional treatments while dosing the hemp oil. It takes your body quite some time to build up to the recommended dose of 1 gram per day. I asked Philomena about this and her immediate answer was "no way - that someone who has it in soft tissue vs. internal organs is a completely different scenario". That being said, I'm wondering what is the harm in doing the help oil AND the treatment? So I started doing a little bit of research in that regard. There of tons of women and men on various cancer message boards having the same conversation. There is more of more news reports of adults and children being treated and cured using cannibis oil. They are even making non-THC (non-hallucinogenic) edibles for children that is being used at major children's hospitals around the country.

Last time we were in Hawaii for spring break we looked at buying a condo as a dedicated second home for our family. There is something incredibly healing and relaxing about the Big Island. After losing out on a unit over spring break we were able to buy a similar unit from some friends that were upgrading to a house. David has worked diligently over the past few weeks making this happen for our family. It is such a blessing for us. David has been asking when we can go check out the place…and I haven't been able to commit to a time because of the chemo schedule. We took a leap of faith and booked some tickets last week after chemo was cancelled. It worked out fine since it was chemo Wednesday and leave for adult vacation the next day. Four days of recharging the battery. Who could ask for more? I slept all day Thursday and Friday but had no guilt that I wasn't taking Abby to camp or responding to whining or crying from downstairs...

I also decided to take Stefanie's advice and load up on the hemp oil and tinctures so that I could start in Hawaii when I had nothing else I had to do. My general excuse is how can I do this and be "on" as a mom? The trick to this hemp oil is to ramp up to 1G a day. If, at night, when I have a capsule with hemp oil the size of a grain of rice (1G is about 25 grains of rice) and I am out for the count how could I possibly function? I have become an official medical cannibis user. I am learning all about cannibis and it's medicinal properties plus a whole new lingo - saliva vs. indica, medicinal vs. recreational, THC vs. CBD, hybrids, edibles vs. smoking, etc. etc. If you had asked me years ago whether I would ever 1) be taking, doing, having marijuana in any form and 2) speaking about it publicly - the answer would have been a resounding NO. I grew up watching my parents smoke cigarettes and MJ and became a crusader against tobacco and marijuana. It's the gateway drug. Ooooooooh. Is it really? Why if there are  medicinal properties in this plant is there such a negative stigma? Is no one making enough money off of it for it to become a viable industry? We need more research. We need more answers.

Here is what I have experienced on the hemp oil thus far - I am relaxed. It helped me sleep after the first two days of chemo straight all day and night (except for meals) and by the third day I felt GOOD. I'm NOT in any kind of pain. It feels very nice. I feel mellow. The things that I don't enjoy about my type A personality are very turned OFF by the hemp oil. For instance wanting to run out and buy everything we needed for the condo on the first day so we had things for the first morning was just a non issue. I was just like "meh"! And traveling on the airplane here and hearing screaming kids yelling "Mom" and "Mommy" normally keeps me on edge and I was just like "meh"!!! I can totally see how this oil is going to benefit me back home. I need to have more of the "meh" attitude about everything other than my kids, my family and my health. I need to let the "little" things that end up occupying so much of my time, energy and consciousness just slide away. I bet my kids will love the new mommy that lays on the floor to play magna-tiles all day and have snacks with them and says "meh" to everything else.  I love feeling relaxed, non-stressed and unfussed. I am liking the new "meh" me. She's not in pain, she takes things slow, she doesn't blurt out stupid things, she just hangs back and enjoys life. I even did water aerobics this morning and will go for a walk later. It's not debilitating. I am able to function much better than I thought I would. Well, I suppose that's how I feel, my friends and family will be sure to tell me whether or not I'm functioning well or not. I'm also going to be tracking my progress, blood counts, etc at Tower to make sure that this doesn't negatively impact anything. All precautions are being taken!!

Aloha!!

Good to go!

The good news is my platelets are at 122. So I'm clear to have the treatment. The bad news is that my hemoglobin is way down so I need a blood transfusion. They want me to get 2 units. I have an "already cancelled once", "very belated" birthday lunch on Friday that I'm trying not to cancel it again. It means that I will have the infusion today, then one unit of blood this afternoon and then one unit of blood tomorrow morning to be done by lunch. I'm told that the blood will make me feel so much better AND it does not effect the efficacy of the chemotherapy.  I welcome anything that will make me feel better.

I also cannot wait to eat tomorrow and break my fast. The woman in the chair next to me ordered some deli and I can smell the food wafting over here….Yum.  I'm hoping that this gnarly fast, it was very hard this time because of the super restricted calories, makes me have less nausea and no vomiting like the last infusion. I created a "juicing" station at home that I can't wait to start using so I can start juicing fresh veggie juice myself. Apparently, I also should be eating some red meat. But I know I can try with spinach and other iron hearty foods too. I'm excited to drink my almond milk from the "mylkman" and my "beautiful cereal" from Dr. Mao. I'm finding that I'm craving healthy food and will keep that up.

HUNGRY.
NOM. NOM. NOM.

Have a great weekend!!

Attempt #3 Thursday

I'm still in digging deep mode, staying motivated to get this next infusion. I've had two failed attempts last week. I went to acupuncture to help with my platelets. Monday - platelets were 69 then on Friday they were 56...oops, WRONG direction. I'm trying again this Thursday. The neupogen shot did bring up my white counts but the platelets need to be at least 90. Fingers crossed.

I'm fasting this week. I started yesterday. I'm not doing the L-Nutra fast. I'm actually doing the protocol from the actual NCI study which is a starvation study. 2 days before chemo, day of chemo, and 1 day after. I can't have more than 200 calories. Yesterday I didn't make it. I had two cups of vegan soup, one at lunch and one at dinner which were 75 calories. Then I was way too hungry at bedtime to even think of falling asleep so I had 10 almonds, which is about 100 calories.  I'm hoping the rest of the week will be easier!!

The protocol for the infusions are changing as well. Dr. McAndrew is switching me to one week on and one week off in hopes that my blood counts can recover and we don't have to delay treatment. I will be getting another PET/CT or liver MRI (ugh) at the end of two months of treatment, NOT after 6 infusions like I previously thought, due to the delays in treatment. She wants to stay on top of the progression and make sure this is going away. The good news is my tumor markers are indicating that they are working. The bad news, other than how I feel and my damn blood counts, is that the liver mapping procedure doubled my tumor markers. All the banging and shoving and resulting inflammation jumped the CA 15-3 from 772 to 1280 (normal range is 0-42.0!!!) and the CEA from 377 to 624 (normal range is 0-5.0). This needs to get under control. It is totally unacceptable in my mind. I'm fasting and I'm going to get my infusion on Thursday. Goodbye tumors. You suck.