brand spanking new

[justjessica]

Just a few stray thoughts

I have an oncology appt and an appt with a new surgeon tomorrow. I am hoping that I will have a surgery date by then. I want to start fixing this now! I also have blood tests for Lynch disease on Tuesday. Thankfully my ex mother in laws friend has the testing kit and can send it out for me instantly.I am hoping that my cancer and my brother brain cancer is coincidental. I can't imagine what will happen to my other 5 living siblings if it comes out that we are positive for Lynch.

I have begun telling people that I have colon cancer, most are shocked and say "you're not an old dude. how do you have colon cancer?" I guess thats the stereotypical patient in their minds. Some seem embarrassed by the colon word. I think colon is a dirty word in some peoples minds. It's related to ass or poop or something. It freaks them out. Two co workers have started crying and I have to comfort them for me having cancer.Very odd. I still don't know the stage obviously.They say it hasn't spread to other organs but I guess surgery will eliminate all the possibility. I have not been sleeping well and the stress of the what if's are driving me a little nuts. Overall I am doing ok and seem to be surprising people with my calm, methodical demeanor of "let's do this and get it over with".

I also have to mention that my boyfriend is amazing me with his ability to keep me calm and focused. We have only been together under a year and he is sticking around. He admitted he had to ask himself what he could handle and then decided to stay and what's to make a life with me. He lost his mom at the age of 17 to a long battle with lymphoma, taking care of her throughout and he had also been with a women with Lyme disease. She had need chemo etc and the relationship ended very badly. His past with dealing with other people's illnesses has caused me much guilt. I feel terrible for putting him through this! As odd as that sounds but it's true. I don't want to be a burden on him or anyone. I also have immense guilt for stressing my parents out. They have lost one child to cancer(brain cancer grade 4 GBM) and I can't imagine what is going through their minds right now. It was the first thing I thought of when they told me it could be cancer. How am I going to tell my parents?

All of this has been stressful and dealing with some Dr's that can't seem to deal with the fact that I am 31 and have colon cancer has made it more difficult. It is the reason for my new surgical appt. I am hoping they have more experience with younger patients with colon cancer.

The biggest thing I am struggling with right now is keeping my mind from running rampant. The phrase I HAVE COLON CANCER keeps blazing through my head and has made working distracting. I work for Trader Joe's and while ringing out customers, asking how they are doing and having them ask me back, well I am sure if I replied Im ok I have COLON CANCER would not go over to well. I mostly fake how I am feeling throughout the day until I get home. The other thing I am worrying about is how long I am going to be out of work. I unload trucks, pull heavy pallets of product, lift boxes,break down pallets, twist, stretch, stand and run around every day. With a lifting limit of 15lbs for 6months I am not sure what will happen.

I also started thinking about all my symptoms and how long they have been going on. I have been anemic for almost 2 years. I had an ER visit back in July of 2011 for severe stomach cramps. They did an xray and said I was constipated. I have been battling exhaustion and fatigue a long time. I have had dizziness,weakness,nausea and stomach issues for quite awhile. The blood in the stool started about 6 or 7 months ago, I tried to ignore that one. Who wants to tell anyone, I bleed when I poop. I don't know it's all the dumb stuff that my brain wants to think about and how I am blaming myself for having this issue now instead of me having dealt with it long ago. If I had gone earlier would it have just been a polyp, could I have saved myself the need for surgery and possible chemo etc. Intellectually I know it's not my fault but emotionally I am blaming myself.

[justin case]

[quote="justjessica"]Just a few stray thoughts

With a lifting limit of 15lbs for 6months I am not sure what will happen.

The lifting limit is a gallon of milk, or something like that for the first 3 weeks. I had to go back to work after 6 weeks, (that's all the surgeon would give me), and was right back into pulling pallets and so forth. I lift tons of paper a day, incremental of course, and after 2 weeks, I was lifting more and more at a time. After the 2 weeks I was almost back to normal.
Regards,
Michael

[justjessica]

I have a surgery date! August 24th I will go in for a resection. I saw my new surgeon and he much more compassionate about everything and actually communicated to me. So I am feeling much better no that things are moving forward. I am hoping for grade 1 and that surgery will solve the issue. Thanks for all your responses and emails. I will be on here asking lots of questions.

[jacekica]

JustJessica you have plenty of time to solve some things before surgery, i think it is to much of a burden - go to surgery and recovery with the feel of guilt - you are not guilty for being ill. No one wants it, no matter how young or old we are. Your boyfriend choose to stay by you and it is wonderful, don't feel guilt about it.
Telling you parents is the most difficult thing, I was happy that I don't have this problem when I heard the C word, my parents past aways 14 years ago - but as hard as it is - no way you are guilty, it is life, in ral life cancer happens.
Third - thinkin about what will be if i went before - we all can ask ourselves the same question, but it is not important any more - we didn't go before, we went when we did and we have diagnose as it is, no guilt, if everyone will meditate they can get cancer - we will all be at doctors affice daily for numerous reasons.
it is important that you are calm before surgery, you will need all you strength, from body and mine to heal. try to find inner peace, through prayer if you believe in God, or any other method you believe is beneficial for you. For me praying and God made all possible and gave me strength to go through all - I live alone, return to work too soon because I had to bevause of financial issue ... and I am here, working and livin and going to onc and surgen regularly every 3 months..... but be calm and don't blame yourself, or food or universe for cancer - it just happens.
I hope it will be I or II stage and all will be well.

[Deirdre]

Hi there and welcome

Glad your surgery date is soon so it will lessen the thinking time and get you in there to get the tumour out and get you on road to recovery.

Glad you have good support from your boyfriend and hope everything goes well for you.

[RayGirl]

how would a person consult with a larger center? Wouldn't we have to drive there? Or do they talk to you over the phone. I always wanted to consult with sloan kettering....but i don't know how

WorriedWife, the quickest and simplest route is to get a referral from your doctor. If he/she doesn't know anyone at Sloan or won't do a referral for some reason, you can call them yourself to make an appointment for a consultation.

800-525-2225 Mon–Fri, 8:30 AM–5:00 PM, ET

You'll need to send copies of all your CT scans, treatment history, and slides of your tumor. They talk you through doing all that when you call them. You can stay ay Miracle House for $50 a night, and if you can't afford a flight, Corporate Angels will fly you for free in a corporate jet.

http://www.miraclehouse.org/index.php

http://www.corpangelnetwork.org/

Hope this helps!
Julie

So Sorry I didn't respond, I should know better than to offer advice right before I hop on a plane. thanks Julie for cover it for me!!! Your doctor can request the consult and that is usually the easiest, but if you want you can also check out each centers web page for information to.

MD Anderson also has some regional locations outside of Texas for patients to recieve some treatments closer to home, if you happen to be near them. They could work with your local centers to provide treatment. However, most likely they would want to see you in person initially, if they are managing your care. I have one friend who visits Houston every 6-12 months for scans and doctor appointments. The interval varies based on the previous results.
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/specialty-and-treatment-centers/radiation-treatment/treatment-locations/index.html

[justjessica]

So I'm not sure if it the stress or if I am just feeling worse because I have flippin cancer but I had to leave work early today. I just had stomach cramps and felt exhausted/dizzy. I can't wait to get surgery and start healing. I'm feeling run down from the stress.

[WorriedWife]

So I'm not sure if it the stress or if I am just feeling worse because I have flippin cancer but I had to leave work early today. I just had stomach cramps and felt exhausted/dizzy. I can't wait to get surgery and start healing. I'm feeling run down from the stress.

Stress and anxiety can totally make you sick. I know exactly how you feel, even though it's my husband and not me. I had to literally quit my job because I couldn't even work, that's how worried I am
Good luck to you Jessica and I hope your surgery goes super well and the recovery is great. I also hope it's a low, low stage! Stay strong!!

[justjessica]

[/quote]
Stress and anxiety can totally make you sick. I know exactly how you feel, even though it's my husband and not me. I had to literally quit my job because I couldn't even work, that's how worried I am
Good luck to you Jessica and I hope your surgery goes super well and the recovery is great. I also hope it's a low, low stage! Stay strong!![/quote]

I never realized the stress that a cancer diagnosis caused. I mean I guess I realized but never experienced from the inside. I lost my brother to brain cancer and that is a totally different type of stress.
and yes low low grade would be awesome!

[AudreyM]

Hey Jessica - Audrey here!
Almost time for both of us. I have been following your posts on here and I have to say Thank You. You put into writing a whole lot of what I have been feeling/experiencing too - especially at work.
The whole scenario about "How are you? I'm fine - and how are you doing? (want to say "I have just been diagnosed with cancer and it really sucks - and how are you doing?") really hits home. I do think I have become quite an actress these last few weeks! Probably a lousy employee though because I have very little concern and/or patience about the small crap at work right now. Whatever is going on there - I don't really don't care about till I return in 6-8 weeks.

Just wanted to wish you the best of luck and ask that you keep me updated! I'll be thinking about you!
Audrey

[justjessica]

So my new stress is paying the bills that are now coming in. Of course I have insurance but they only pay so much. I also got a call from the hospital to per-register and they said my co insurance is due at time of check in. That will be $2100 out of pocket. I have to say I was kinda surprised that they need it up front. I am now scrapping together some funds. I truly hate being sick and in this predicament. It's hard enough dealing with it emotionally but the stress of finances and the strategics of making sure things are taken car of when I won't be able to do them is almost too much. I'm having a blah day and need to find a relax and de-stress soon.

[justjessica]

Also the stress is making my stomach pains and bathroom urgency worse, not to mention I wanna just puke. I am so nauseous.

[kims]

Jessica-

Take a deep breath. Call your hospital's main number and ask if they have a patient advocacy office. If they do, call them and see if they can intervene on the co-pay and set up some type of installment payments if that is what you need. If there is no patient advocacy office, call the financial office and tell them what you need and see if they have someone who can work with you. My heart goes out to you that you need to go through this at your age. You should be worrying about paying your student loans and not about paying for major medical costs. Accept help from people around you when they offer. Don't try to do this all yourself. Start keeping a file for yourself and throw everything in there. Get copies of everything - lab reports, pathology reports, bloodwork, everything. Also start a notebook where you can jot down things you need to ask the specialists and doctors as well as things you need to remember or check on at a later time. Once the surgery is over and the pathology reports are back, you will have a better idea of what is happening and what what the game plan is. Until then, just try to stay calm, ask for help from friends and family and remember to take care of yourself. I know this advice is difficult to follow at this time, but taking care of you is the most important thing right now. You can always PM me and I will send you my phone number if you just need to vent or talk.

Kim

[ranger]

Hi Jessica, I'm sorry it's cancer. What a shock. If you don't like your doctor there is at least one person here from Phoenix who might recommend his docs. (I'll PM you). It sounds like you have good instincts about your medical care.

When I was diagnosed with a cancerous tumor in my sigmoid colon, I had a met on my liver, which was operable, and my CT scans and MRIs showed lesions in my lungs, but the lung thingies turned out non cancerous. Mine are either scar tissue or something else, but they've never "lit up" (responded as cancer on a PET scan) and they never grew nor shrank. So there's no telling. I had a number of cancerous lymph nodes, and a perforating colon. I delayed the start of chemo a few weeks so I could go to a family event, but eventually had all my surgeries and chemos. I'm 3 years healthy since there has been any detectable cancer in my body and 2 1/2 years since the completion of chemo. My docs have always been really encouraging, and it helped me a lot to take their optimism to heart. Cancer is very individual, but I thought I'd tell you about mine, so you'd know at least one person who is alive and well.

There are lots of members on this forum who are young like you, and there's a great foundation called i2y, or "stupid cancer" that provides lots of support for young adults. http://stupidcancer.com/ They have tons of information on things like disability, fertility, health, law and social issues, and they produce a great podcast.

You are probably eligible to collect "social security disability" (not SSI), and you can probably get a waiver to suspend payments on your student loan. These things can be taken care of after you make your medical plan. The people at social security are fabulous; you can call them.. But I would suggest that you deal with one thing at a time.

I just read another post from you. Sounds like you should not stay with that surgeon. I bailed on one of my surgeons and ended up with a terrific one.

Get some sleep! oh, when I got an oncologist I asked for an anti-anxiety medication. It helped! And I ignored blood in stool too. No use looking backward though. So to speak.
yrs
AMY

[RixInPhx]

Hi, JJ!!!

I didn't read enough of your posts to realize you're in Phoenix.
I am too, and am a Colon Cancer survivor of 2 years, all on intense chemo. But then I'm an old dude.

Your surgery is the 24th, this Friday.
If I can be of ANY help, just tell me and I'll do whatever I can.
I'm not working so my time is my own; I'm PM'ing my email and cell # to you.

What hospital are you at?

Best of luck with everything, Rick