Monday, May 7, 2012

I wish people knew what I knew...

Okay, so I went to Philadelphia to the cancer treatment center of america and as much as I wasn’t impressed I don’t want to say the place was horrible. After two solid years of doing hardcore holistic and integrative approach, an offering of being blasted with chemo with a side of a little acupuncture and reiki is not my idea of holistic or integrative treatment. These cancer hospitals are funny…they know how to work it and market themselves. We had up to a 6 night stay in a Radisson for a one time fee of 75 bucks and all three meals were included for myself and my caregiver. A plus is that they offered good quality food, such as green juices made to order, healthy grains, and coconut water. But they also had there share of crappy foods such as chips, bacon, cookies, pizza, etc. If you require a flight for transportation that is paid as well for both you and your caretaker and you are picked up from the airport in a limo with the CTCA logo on the side door (of course). Which is a little strange but I guess for people who are scared out of their wits this could be an added bonus and mask the stress for a quick minute. So all in all it was a traditional cancer hospital with a whole bunch of fluff.
As for my personal experience, every doctor that came across me didn’t know who the patient was…me or my mom. They were all shocked in how good I looked and said that they were expecting a different “look” based on all the reports they received and the fact that I had my
spleen removed 6 months ago. I was encouraged to get a pet scan to get an idea of where my body is at. I reluctantly agreed, was injected with the radioactive glucose, and underwent a stupid pet scan. The results were completely energy sucking and frightening. Every other sentence in the report had “likely metastasis, suspected metastasis, etc.” It took me a couple of minutes to realize I was falling under their ‘lets scare these people into chemo tactics’ and came to my
senses and remembered all that I learned about how false these pet scans are. Basically the SUV (sugar uptake value) is what needs to be looked at and if it is above 12 there is something going on that needs attention, however even in this case it could be inflammation or infection rather than cancer. If the SUV is a number as low as 2 it is nothing to even being concerned about. The average Joe could have a pet scan and have several ‘light ups’ with a low SUV. This is what I
learned from being in Switzerland and from Fred (Cellect) but of course the cancer hospitals say an SUV above 2 is worrisome, which is plain old bullshit. But the kicker about my pet scan was they actually noted that I had my ovaries, my uterus, and my gallbladder taken out. Hello???? I have all three of these and if they don’t know what is even inside my body how the hell would I trust their reports of what is going on inside my body?? Anyway the areas that lit up were by my
abdominal area (pancreas, liver) and when I spoke to Fred he explained that this was because I just had my spleen removed and inflammation is to be expected and will probably take up to 6 years to fully heal. It also noted that the area under my arm (the black slave area) is necrotic (aka dead.) However they still said it is dangerous and it could spread and yada yada. Hello once again???? It’s dead!!!!! Do they ever focus on the positive and let people know the good things without turning it into a gut wrenching scary moment? So once I got the pet scan results I was a little frazzled but then I centered myself and recalled all I learned and focused on how Im feeling, my energy, how I look, and that I know for damn sure that this cancer in my body is dead. Once I reviewed my scans with Fred I felt much better because he pointed out all the bogus crap they write in these scan reports and gave me a different twist on what’s really going on inside my body that made much more sense to what the cancer center was telling me.

So as I mentioned last post, my main reason for the visit was to inquire about getting surgery. When I met with the surgeon he initially said since the cancer is systemic it is not suggested to get surgery. However, he then examined the area, took one look at it and said he thinks this would be an exception and should come out. Hmmm….interesting, maybe because he knows its dead??!! He even said when showing me the images of my scan on the computer, that the one under my arm is necrotic (dead) but stated that this is not necessarily a good thing as it could get ugly and spread. He did not agree to go easy and only take out the nodes that were affected and
said he has to take out lymph node strands 1 and 2. He said this is for my own good. Oh okay Mr. Surgeon, removing most of my lymph nodes under my arm and a bunch of tissue and leaving me with lymphedema and frozen shoulder is for my own good? Thanks for looking out Mr.Surgeon…or not!!!!

It dawned on me that I should give Dr. Beg, my original surgeon, who I trust and feel comfortable with, a ring to see if I could get an appointment. Sure enough I got an appointment that same day, left Philly, and met with him. Within seconds, he took a look of the area and agreed to take the tumor and only what was affected out. We made an agreement that if he sees anything else that look suspicious and has to come out once he is in there that I would allow for him to take it out. I said by all means and that I just want whatever is black out. So no regrets to going to Philly as whatever takes place along the way is what makes this journey the educational journey this is. However, I could have went right back to my original source, Dr Beg, and got what I wanted without a trip to PA. So my surgery is scheduled for May 22nd at Northshore Manhasset. It will be an in and out surgery and according to Dr. Beg nothing compared to a lymph node dissection.

I’m super happy to get it removed because my lymph system is being blocked right now because of all the deadness and we need to have that lymph pumping and working to its best ability. However, going under the knife always has the chance of new complications and I’m not looking forward to another beautiful scar but it is what it is. This whole journey, I followed my heart and my gut and I know its leading me in the right direction. And as far as this surgery, I just know that it’s the right thing to do to get me that much closer to remission.

Also, I spoke to Dr Rau in Switzerland and he is on board that I get the surgery, however feels I should come there for intense treatment for immune system up building and to help the healing process soon after the surgery. So not only will I be getting the surgery I will also be going back to Switzerland in June sometime.

We had the Long Island run this weekend. Mike, my parents, and my amazing friends and family were there to support!! It was invigorating and inspiring as usual. May 20th we have the 5k melanoma walk/run in Eisenhower Park. You can choose to run the 3 miles or walk it. For more information go to . The more people there the more support I have….. so come join us if you can!!!!!

Other than that things are going well and I’m just looking forward to all that the remainder of the spring and summer have to offer.

Oh, and black slave pics to come soon.

Peace and strength,



Unknown said...

WOW Li- I am excited to hear about your progress and the upcoming surgery. My mom and I will be at the walk to see you and your family and give you our best wishes for the surgery. xooxxo lots of love and infinite best wishes! Love, Lori

Jennifer Childress Martin said...

Hi Lisa, I just found your blog today. I read it from start to finish. WOW! What a journey you have been through. My husband was diagnosed with Stage IV Melanoma in January of this year. We tried the holistic approach for about 6 weeks before he started traditional treatment at MD Anderson in Houston. I admire your courage to take the holistic approach. I wish I could get my husband to do this! Just the diet change we did he said he would rather die than eat like a rabbit the rest of his life. I think that was just on a particularly low day. I also keep a blog, ours is

~Jennifer Martin

Karen Nelson said...

Have a great walk on a gorgeous weekend! And good luck with the surgery! Sounds like you are in good hands! So happy for you, Lisa! I totally feel like the light at the end of the tunnel is VERY close!!! xo

-Karen Nelson

Cate said...

Hi I was reading your blog and found it very interesting as I am going through my cancer journey too. How are you now?