a true test of patience

I have so many questions in my mind regarding a lot of serious stuff.  I want to know when I will be having HIPEC (or if I will for 100% sure have it) I want to know where exactly the mucin in my belly is and how extensive it is.  I am hopeful that since Dr. Hodul was just in there on 12/10/12 not much has changed or will change but I think about it a lot.  I want to know how to prepare for what's to come and what will go along with it.  Will I have a relatively easy HIPEC? Will I end up having more organs removed than we expect? Like, will I need to have my spleen removed? Will I have to have a hysterectomy at 32 years old?  Sean and I hoped for another child so do we go to the extreme of freezing eggs? How do I prepare my kids for me having another surgery? What will we do if Vika (our nanny) isn't with us anymore once I have the surgery? I can't imagine being away from my kids for 3 weeks... so what solution will we come up with for that one.....  As all of these thoughts race through my mind (and there's even more of them), all I can do is breath.  I suppose all of those questions will be answered sometime soon, so for now I have no choice but to enjoy today. And I am enjoying my days.

I officially go back to work tomorrow.  I think it will be nice to be back in my "normal" routine.  And, our European vacation is almost planned.  I can't believe Sean and I are taking this huge trip but we have a lot to celebrate, including our 7 year wedding anniversary.  We'll be arriving in Zurich and heading straight to the mountins for a few days of skiing.  We'll head over to Paris for another 3 days and then finish our trip in London.  I have never been to Europe and Sean hasn't been in many years.  We are very excited!

Check out these websites for some awesome recipes

http://detoxinista.com

http://rawmazing.com

Just a quick cry

A roller coaster. That is what I feel like I am on.  Despite the converstion I had today I still feel good. I still feel positive.  I'm still feeling strong.  It's just taking a lot of concentration and focus to stay on my "I am in charge of my attitude" track.

I spoke with Dr. Sardi today.  He's one of the best surgical oncologist when in comes to PMP.  I sent him my records about 2 weeks ago and I still hadn't heard if they had received my records so I called earlier today.  I was quite shocked when Dr. Sardi called me back personally.  I think he was trying to reach my Dr. here in Tampa, but he stayed on the phone with me.  He said based on my specific pathology and how early this was found, I have a 90% chance of cure with the HIPEC.  Yes, with the HIPEC.  He feels I definitely need the surgery.  Without it, he says the mucin will likely grow into many tumors.  He said that the sooner I did the surgery the better the outcome because there would be minimal tumor spread, which would mean less organs would need to be removed (spleen, gallbladder, uterus, ovaries, omentum, amoung others that are sometimes removed during HIPEC)  He felt that as of today (and without seeing the inside of my abdomen) the only 100% must go organs would be my right ovary, right fallopian tube and omentum. Once we got off the phone I had a good, quick cry in the parking lot of rollin oats. (I was on my way there to get my daily wheatgrass shot)  I composed myself pretty quickly considering the expert opinion I just received. I figure 90% chance of a cure is actually amazing.  Of course the thought of enduring HIPEC makes my skin crawl and my heart break a bit, but hallelujah.... 90% is much better than I had read.  I think he gave this statistic because I was caught so early and I have the low grade PMP (some people get a high grade aggressive version which is horrible) and because I'm young and strong.  It's just so scary because there has to be some cons to having HIPEC..... What will it do to my body? I've heard the recovery can be anywhere from 2-6 months.  

I still need to hear back from Dr. Sugarbaker.  Once I hear what he has to say, Sean and I will fly up to Washington, DC/Baltimore to meet with both of the Dr.'s to see who we feel the most comfortable with.  No offical decision has been made on having HIPEC but my first response is I'm not going to gamble with watching and waiting if I have a 90% chance of a cure with the surgery and a pretty certain chance of the disease progressing if I do nothing (which in turn would make the surgery more difficult and the cure % would go down.)  I definitely wish there was another way to get rid of this stupid disease.  I feel so healthy today.  It's bizarre and twisted to feel healthy but also to have something inside you that can kill you.  

Sugarbaker surgery article

This article is totally graphic.  The article is highlighting Dr. Paul Sugarbaker and the surgery he has basically created HIPEC, also called Sugarbaker technique. I've mentioned this surgery many times in other blog posts because this is how PMP is treated.  I am very optimistic that I won't need this surgery (though I am willing to do anything to save me life).  The article is just so interesting I had to share.  Please keep in mind that Laurie King, the patient in the article has colon cancer so the statistics in the beginning of the article don't really relate to appendix cancer or PMP.  I think Dr. Sugarbaker sounds like a truly great man. 


http://www.washingtonpost.com/lifestyle/style/surgeon-performs-controversial-cancer-surgery-named-after-him/2012/11/25/c8ad7ab8-29da-11e2-bab2-eda299503684_story.html

rambling

I'm feeling good :)  I have some serious positivity flowing through my veins.  I've worked hard this week to get my head together.  It's weird to think that attitude is a choice...... Obviously life can throw some distractions but at the end of the day we decide how we think; how we react to certain situations and ultimately our entire attitude and outlook on life.   Before November 19th I did not spend every day wondering about my life and how much time I had left or about what could go wrong so why should I now.  Today is a perfect day to just enjoy life.  And I had such a nice day. I had my second workout this week.  I am so unbeleiveable sore!  I had lunch with a dear friend.  I ran some mindless errands and stopped by rollin oats for my 2nd wheatgrass shot of the day and a super yummy juice (beets, kale, cucumber, carrots, ginger and celery).  I spent the evening being a normal mom.... playing with the kiddos and cooking everyone dinner.  And now Sean and I are relaxing, watching mindless, silly TV.  We are also planning our 7th wedding anniversary this March.  We are going a little overboard with a 10 day trip to Europe to celebrate us and to celebrate our life together.  I'll post more about that trip once it's planned.

I'm trying a few new things next week.  I have a lympatic massage and a ionic foot bath scheduled and I am thinking about seeing a chiropractor.  I have only been once and I did not like the adjustment but I do feel really out of line.  My left hip feels out of wack and my whole core feels off.  The goal of the foot bath and massage is to get rid of toxins in my body.   My diet has been so good too.  I have turned into this veggie machine.  And I feel great.  I encourage anyone to purge the processed foods and high fructose corn syrup and enjoy the raw, natural goodness that veggies and some fruits can provide!  I've really enjoyed Kris Carr's book "Crazy sexy Kitchen".  There are a ton of yummy recipes in that book. The black bean burgers were amazing!

Have a wonderful weekend.

glimmers of hope

Tonight was a good night.  Sean and I got to speak with Dr. Bartlett's physician assistant, Heather. Dr. Bartlett is a surgical oncologist in Pittsburg who speicalizes in PMP.  My mom found a website on HIPEC that offered free phone calls for people wanting information on HIPEC and ironically Dr. Bartlett was on the page.  He is one of the Dr.'s I have been interested in interviewing.
I wasn't sure if the conversation was going to be basic and nonpersonal or if she was going to allow me to  tell her about my specifics and ask some questions pertaining to me.  Luckily the first words out of her mouth was "tell me what's going on".  I tried to give her all of the relevant information from my first pathology from the appendectomy in November, the 2 different scans I had, blood work, and the 2nd surgery and pathology.  When I told her how large the carcinoid tumor was she didn't believe me. She asked me if it could possibly be a typo!!! (carcinoid tumors in the appendix are typically 1 cm or less when found and mine was 7 cm) She agreed with me that it is a miracle that the carcinoid didn't spread and that all tissue from the hemicolectomy and all 46 lymph nodes removed were clear of all disease.  It is a miracle.  We spoke a lot about the mucin from the other tumor.  I learned that my appendix technically ruptured. She agreed that if what I told her was true (which is what I've been told by other DR.'s) this was caught early and that there was a strong possiblilty that I am not eligible for HIPEC and get this..... that there's a chance that the pmp will never change.  They have some patients in a similar situation that they've been watching for over 10 years and there's been no change with anything.  She said there's a chance that all of the mucin with the bad cells could be gone.  Now that would be a real miracle.
Watching and waiting is difficult because there's so much unknown but if the next 2 pmp specialist agree with Dr.  Bartlett ( and with Dr. Hodul) that would mean everyone is on the same page and that is what we'll do.  As much as I want this disease gone for good and that I am willing to do HIPEC.... I don't want to do it.  I am literally on a real life rollarcoaster.  The past few days were rough ( from self induced worry and unneccessary anxiety) but I'm feeling good now.
I think about how fortunate I am to have the prognosis that I've receieved, not just from tonights converstaion with Heather but from everything that's happened.  As far as getting diagnosed with cancer I have been beyond blessed with good news.  I am so thankful for everyone who has been praying for me. Please continue to pray that whatever is in my "Belly" never changes or just goes away on it's own.

what makes my heart smile

2 months since diagnosis

Today I met with a group of people who were some way effected by PMP or appendix cancer.  There's a private facebook group for PMP'ers and somehow we figured out there was a large group of us in the Tampa Bay area..... so we got together. Since Sean is a bit out of commision from his surgery, my Mom went with me.  Even though it was nice to meet other PMP patients, it was also really hard. Every one of  the patients had been through the HIPEC surgery, except me.   The woman I sat next to was so amazing.  She was so encouraging.  Unfortunately, she lost her husband almost 3 years ago to this horrible disease.  I feel in my gut that I need this sugery.  How could the itsy bitsy cells not grow into big bad mucin producing tumors.  I feel like the surgery is imminent.  Maybe not tomorrow or next month but I feel like it will be happening. I know I haven't met with a specialist yet, but from the research I've done, hearing from other people on the private FB page and from todays lunch...... I'm feeling pretty sad that I have to endure another, even worse surgery.  I know I didn't need to go to the lunch, but I need to hear I'm not alone.  And even though I feel out of control, everyone said based on what I told them, I was early in this disease.  I just get the wind knocked out of me sometimes.  The only way I can describe it is..... If you've ever had a broken heart.  That feeling of an aching in your chest...... multiply it by 100 maybe 1000..... that's how I feel when I think about what's in store with this disease or that I even have cancer. It knocks the wind out of me.

I sent all of my medical information to Dr. Sardi today. Hopefully he will be able to look it over by the end of next week. I'm waiting to hear what Dr. Blanco has completed, but if he hasn't reached out to Dr. Sugarbaker by the end of next week I will start that process on my own. Apparently Dr. Sugarbaker books out for first appointments (if he even accepts your case) 2 months in advance.  I just want to talk to a specialist about my specific situation.  

Days like today are so tough.  In some sort of non rational way it's actually hard to even look at Ava and Liam.  I just never in a million years thought this could or would happen to me, especially at 31.  I want to be here for my kids and for Sean.  I feel like I will be. It just may be a bumpy road for a bit.   

information

Sean and I met with Dr. Blanco tonight.  (he is a medical oncologist that has known my dad since they were kids) After looking at my surgical notes from December 10th and the pathology reports from that surgery he told me he was only concerned about the mucin or PMP. He does think the carcinoid is gone (hoping he is correct:) He feels this was caught early, very early.  Our plan right now is that he's going to write a summary of my case and send it to the 130 oncologists in his network.  (to get their opinon on how they would monitor or treat me regarding the pmp. ) He is also going to contact Dr. Sugarbaker in DC.  Dr. Sugarbaker is like the Godfather of appendix cancer, specifically mucin/PMP.  If Dr. Sugarbaker responds, his opinion will hold a lot of weight in what we do.  Sean and I have decided to have Dr. Blanco take over my care at this point. I feel like Moffitt did a great job with the surgery (which Dr. Blanco confirmed was necessary) but I am still not happy with the medical oncologist who stood me up.  I want an oncologist who is on my side and is going to be giving me his/her undivided attention. Dr. Blanco will monitor me with a handful of blood marker tests every 6 months, a 24 hour urine test every year ( I think that's what he said?) and MRIs or CAT scans every 6 months for a few years then once a year after that.  He told me that MRIs are just as sensitive as CAT scans and the radiation from CAT scans isn't good and can actually cause other cancers.
So as it stands, Dr. Neri is reaching out to MD Anderson for me (though I may have to remind her since it took over one week to get my lab results!!) and Dr. Blanco is reaching out to Dr. Sugarbaker, aka The Godfather.  But from what I have learned fromt his entire experience is that I have to take control of my health. There will be no waiting for those consults or appointments. I am in charge of my own health so I will take my referral (for a second opinion) and get in to see one of these PMP Dr.s.  I think it will be Dr. Levine at WFI or Dr. Bartlett in Pittsburg or maybe both!

Two interesting tidbits from my meeting tonight with Dr. Blanco.  He said that even with a fast, aggressive cancer like lung cancer- the cells grow so slowly that someone diagnosed with lung cancer probably had it for 8 years... .just growing from tiny cells into a detectable tumor.  So with my very slow growing cancers, I have had them for a very long time.  (makes my skin crawil) He also said that We (the cancer community) know that carcinogens cause cancer.  The example he gave us was how hot and quickly we cook our food... like searing a steak or ahi tuna.  So the new motto is cook your food LOW and SLOW!

living with cancer

I've been having a pretty good week.  Even with the infection scare and so much unknown, I've been doing ok.  In the past when I'd hear of someone getting diagnosed with cancer (especially a young mother or father or any young person really) I'd think "how in the world do the go on?  How do they not just freeze in fear? How are their thoughts not completely consumed with the "C" word"  And now that I've been faced with this stupid, horrible diagnosis I have the answer to those previous questions.  It's simple really.   I have been given two choices.  (maybe more, but I'm very black or white) I can let cancer have me or I can have cancer. I can let cancer dictate my life or I can.  I can turn into this angry, grumpy person or I can continue to be the positive, upbeat person I've always been. So I choose to be Me.  I choose to make the best of every day.  I want to enjoy life. I want to enjoy every moment.  Because really, without getting too sappy, who knows how long any of us have here on Earth.  I have moments of panic (many of them) but I'm learning to push them away.  Most things we fear are not true  nor will become true.  I also have moments where out of nowhere this saddness overcomes me and I get all teary eyed and pity-party-ish but I manage to get myself put back together quickly.  What I want is impossible.  I want this to go away; to have never happened.  But, that's just not possible.  Soooooo, I will live this awesome life that I've been given.  My situation could be SO much worse.

I'm starting to feel like myself again. I'm no longer scary skinny..... just much thinner than the normal me.  I am starting to have more energy.  I even took a restorative yoga class last night.  It was actually sort of depressing because I couldn't do most of the poses but I will get there.  I'm getting to the point where I'm sort of tired of talking about my cancer.  I don't mind when people ask me how I'm doing or what's new (so don't hesitate, I'll let you know if I don't want to talk about it and I'll always post important updates here)  I still have no idea when or where my second opinions will take place.  I think I'll feel good when those are planned.  I am meeting with a new medical oncologist tomorrow.  I am EXTREMELY irritated that my previous oncologist stood me up at our post op. appointment. I realize that he's a carcinoid guy and my carcinoid cancer is considered to be in remission but 1. I still have the other cancer in me (PMP) and 2. I am a freaking person, not some unimportant thing he can just cast aside. I need answers to my questions. I need a plan.  I'm a girl. I like to talk things out over and over.  So, the Dr. is a family friend and also a very good oncologist and he's made special time at the end of his day to give me his undivided attention.

One more thing, Sean is having surgery on Thursday.  (We never intended to have three surgeries in 3 months but oh well.  He has an inguinal hernia that has to be repaired.  We feel very comfortable with his surgeon and are looking forward to him being all fixed up.  Please keep Sean in your prayers on Thursday.  I know he's going to do great!!

Jenesa

Changes

So many of you have asked about the changes we have made since my diagnosis.

I want to preface that: 1. a lot of people may disagree that any of this makes a difference and that's ok.  This is something that Sean and I feel does make a difference and it's something that we can control (since getting diagnosed with cancer makes you feel completely out of control) 2. I am not a Dr. or a nutritionist so don't take my word for it. Do your own research and ask your Dr. any specific questions.

Diet
We have done a complete 180 in this department.  We've always eaten relatively healthy...... salads, veggies, oatmeal, etc., but we also had a lot of sugar, processed foods, foods with GMO (http://en.wikipedia.org/wiki/Genetically_modified_organism), non organic foods and many other things in our home.  I think that unless you live in a bubble it's impossible to do this100% of the time but my goal is to keep our home and diet at home as clean as possible.  I do the best I can when I'm out and about.  We threw away all of the food with sugar in it. Including Sugar, Splenda, etc.  No more brownie mixes. NOTHING with high fructose corn syrup.  We threw away anything processed.  Goldfish, instant mac n cheese, frozen dinners, etc.  I will be the first to say this has been hard to get used to. No quick meals around here anymore. We are having to cook most things from scratch, but we are getting used to it.  We buy all organic fruits and veggies. Period. We buy only grassfed, organic beef, chicken and our eggs are free range, organic, totally happy eggs:) No more pork, shellfish or processed meats. Only wild caught fish (no farm raised)  Organic milk, organic yogurt, organic and raw almond butter.  The only sugar in the food is natural sugar, like from an apple or beet and if a food has sugar in it- like a pasta we try to only eat gluten free or some other super-duper healthy grain.  We are making our beans from dry beans, not canned, organic coffee too.  The only sweetener we use is Nu-Stevia.  We eat as much raw veggies as possible.

 As for me specifically, I cut out all sugar, no more coffee :(, no alcohol :(, no beef and limited poultry.  And no dairy.  I'm headed towards vegan + eggs and fish.  I am still reintroducing foods since my surgery so it's trial and error. There hasn't been anything that I just couldn't handle.  I guess we'll see how I do with Kale ;)  I'm also drinking tea.  Specifically organic green teas.

Our new favorite restaurants are Boca (on platt street), Rollin Oats, Nature's food patch (in clearwater) whole foods and hopefully this list continues to grow.

Supplements
I am taking a lot of supplements.  In my opinion the most important one for me is a probiotic.  I'm not going to list everyone of them, but a good multivitamin, different immune supports and fish oil.  They are all the cleanest brands and have been recommended by my nutritionist.

Household and Personal Products
This was eye opening.  I'll keep it as short and sweet as I can.  We threw away all clorox products. No more windex, no more fabulouso.  No Dial soap. If smells strong, it has tons of chemicals in it and it just isn't healthy for you to breath that nonsense in. We have switched to meyers products, ecover, better life, and seventh generation.  Next step was cotton products.  This I'm sure many people will disagree with, but to each is own. We switched to organic toilet paper and I have switched to organic tampons.  We still use regular paper towels because that isn't really getting near your body.  We use all organic soaps, body washes, shampoo, conditioner, etc. I have found some great brands of organic/all natural make up and facial cleansers and lotions. We use ECO laundry detergent and seventh generation fabric softener dryer sheets.  And we switched dry cleaners.  Dry cleaners use so many chemicals that are harmful  The only green dry cleaner I could find is on N. Dale Mabry. It's called Martinizing Dry cleaners.  They did a really good job!! No more deoderant with aluminum.  This has been a hard change.  (and a stinky one) I have found two brands that are organic, all natural, etc. They do not work as well as Secret or Degree but I'm taking all extremes.  We switched to this organic tooth paste.  It's sort of gross but it is keeping my teeth clean and it doesn't have any ingredients that I can't pronounce.  Also, don't forget vinegar is a great cleaning product too.

I'm figuring this out as I go. I have a great support system, with lots of knowledgeable people nearby.

One of my favorite books is by Kris Carr.  She has a few but my favorite is Crazy Sexy Kitchen. It has lots of recipes and some basics to eating healthy.  Her other book Crazy Sexy Diet is good too.

I'm all good

My appointment was finished in record time.  Seriously less than 1 hour total time. I was expecting to meet with Dr. Hodul but the P.A. came in instead.  Apparently they consulted before hand, but this is the second time with Moffitt that I had a Dr. appointment and they no showed.

We spoke about my symptoms and she checked out the swollen lymph nodes.  She basically said that because I was skinny it's not abnormal to be able to feel them.  I told her they were not always that big. However she said she could feel nodes on both sides.  The good news is the tenderness is going away (I've been on antibiotics for almost 24 hours) She felt it was not an infection from the surgery and that it may be an infection from elsewhere.  So I follow up with another Dr. tomorow.  I'll finish all of my antibiotics and notify them if any of my symptoms get worse or if I get a fever or some other new symptom.

She was very confident that this was not a cancer spreading type of thing.

Dare I ask for more prayers?

The good news is I haven't completely panicked. The bad news is something is going on in my abdomen. Like an infection of sorts. Not on the incision but IN my belly. Last night when I was in bed I felt some soreness in my groin area (like bikini line) and when I pushed it, 1. It hurt! And 2. I felt a nodule of sorts.  Of course the first thought was OMG the cancer has spread to my lymph nodes and now they are swollen......... I calmed myself down and started making phone calls this morning. Luckily I got an appointment with my previous ( and totally awesome) internal medicine Dr.  I also spoke to the GI clinic at moffitt. They told me they were leaning towards an infection but to let them know what my Dr said.   Dr Neri felt on my belly and on the area of concern and she immediately felt 3-4 inflammed lymph nodes. (insert silent mental freak out here) she said she thought it was an infection of my abdominal wall/tissue and also told me I needed a CT scan. (this was like having salt rubbed all over an open wound because I believe if I had see her in April 2011 instead of trying out a new, closer primary care dr, she would have ordered a CT based on my symptoms and this would have been caught way earlier)  I immediately protested the CT scan. I mean is that necessary?? I just had one. Simmer down on the radiation PLEASE!! She gave me two antibiotics (which I'm waiting to be filled as we speak, sitting in the publix parking lot. Typing this on my iPhone. Excuse typos and auocorrects) I called moffitt and left voicemails for everyone at the GI clinic pleading for an appointment tomorrow. I'd be lying If I said I wasn't terrified. Luckily the PA called me back and Dr Hodul will see me tomorrow at 130. They told me pain is good. Cancer lymph modes dont typically cause pain, pain means infection. Great but infections can suck too. Dr Neri was impressed that I caught it. I have no fever, just fatigue.  So I wait for tomorrow.
Dr neri is also going to help me get intoMD Anderson. You need a referral and she's willing to make the calls.  Hopefully this will lead to my first second opinion on the mucin (PmP) in my belly.

I decided to buy two scratch off lottery tickets while I wait since I must have odds of getting the impossible BUT I didn't even win a new ticket. Serves me right I guess.

Please pray for tolerable news tomorrow.  Nothing too complicated and definitely nothing related to cancer.

how do you turn your mind off?

Seriously, if anyone knows how... shoot me an email. (jenesasjourney@gmail.com)
I can not stop thinking/worrying about this pseudomyxoma peritonei that is inside of me.

one in a million

Uggg. Ups and Downs.  I'm really going to confuse you all (and myself).  Everything is still the same.  I think I'm just dealing with the settling in part.  I can't believe that I have a cancer that effects one in a million people. I actually googled one in a million and "if you are one in a million there are 6000 people just like you" popped up.  But then I thought, well how many of those 6000 had a second STUPID cancer. I feel like I won the powerball of cancer odds.  Does that even make sense? Even being 3 weeks out from surgery I still feel like a really healthy person.  It almost knocks the wind out of me when I think that I-have-cancer.

I had my first meditation class today.  For those of you who know me, you know I'm not one to sit still. I have a hard time being quiet (just ask my husband or my mom).  And to be honest, I have a hard time shutting my thoughts off.  It was really nice to get an introduction to what meditation is and how to do it.  I feel like I learned a lot. I even made it through a 20 minute practice.

I also had my first really green, alkalinizing smoothie this morning.  I was nervous I wouldn't be able to tolerate it but I felt just fine afterwards.  It was really yummy too.  Coconut water, 1 avacado, 1 cucumber (without seeds), 1 banana, 1 handful of spinach, cacao nibs, a little protein powder, probiotics and ice.

Here's to another post that is just all over the place. (sort of like my thoughts, but I'm making progress :)