Not a hernia

I really don't even know how to blog this.   I officially fired my providence oncologist.  I am now getting treatment at Dana farber.

Dr Chan, who I just met with for the second time actually viewed my scan unlike the providence dr.  There is a mass on my uterus, as well as numerous nodules all over my peritoneum(abdominal lining).  That hernia that has been bothering me, that's a tumor.  All my incisional sites that have big nodules are all tumors that I can literally see and feel poking out of my stomach.  I have been told by numerous drs that it was just scar tissue but this oncologist confirmed with actually examining me and comparing to scans that the tumors formed on the scar tissue.

Once the cancer has metastasized, which is what has now happened to mine, meaning it has spread to other parts of the body from its original origin, you will never be cured.  This dr suggested the same chemo regimen as my providence dr.  She said that we can try to control the disease with chemo and when it doesn't work anymore we will try another chemo.  She said that without chemo from diagnosis she would give someone 1 year, 2 years with chemo.  My cancer is extremely aggressive.  I wanted to try to treat it with a new diet but Since I am in so much pain and I already used up that 1 year I  feel my only option is to do treatment.

I have no hope for drugs curing me but doing a drastic diet change that I have already started, I believe is my only hope.  I am talking massive amounts of juicing and raw veggies.

I am scheduled to start receiving chemo a week from today up in Boston.

Pray for me, pray that I can keep my positive attitude.

I'm blowing up

So I would say I'm at least halfway to being as full of fluid as I was on Wednesday.  Back to sleeping in the recliner and not feeling good.  Very dissapointed.  I have been surrounded by family and that is a blessing.  My brother flies in tonight and my mom is here.

I am anxiously awaiting the apt Monday in Boston.  I have an order in to get drained again, just not sure when to do it.

Just pray!

relief!

I had the tapping done this morning, it was very interesting, not too painful and I might have to do it again and I would, I feel so much better.  They drained 2.3 liters of fluid.  For those that need a better visual, I weighed 5 pounds less after!  And for an even better visual here is a before and after picture.  The marker on my belly is where they marked to remove the fluid, and yes you can simply just cover with a bandaid after!

I still have some extra belly, I think the skin just needs to go back to normal.  I do have some tightening in my chest that I am hoping goes away, I had a lot of shifting of everything inside after, clearly everything was displaced!

My mom arrives this evening, so there will be another relief!  I have a wedding this weekend that I was a little sad about attending because I looked pregnant in every dress I tried on, now I don't have that to worry about so that is nice.  I don't know how long it will take for the fluid to reappear but at least now I know the symptoms and can get it drained before it is too uncomfortable.

I am very resistent to doing more chemo.  The chemo they already gave me clearly didn't even put me in remish at all.  This other chemo is only a little different and it seems like a big leap to be taking and suffering for on the off chance it will work.  I learned a lot of natural ways to heal from cancer at the conference and I am praying about whether to take that route, please pray for me to be guided in my decisions!  Hopefully Monday will provide some answers.

here we go again, first opinion

Not really thrilled with my oncologist right now.  There were so many contradictions in what he said and I am just feeling very angry today.  anyway, after not even asking how i'm feeling or even suggesting the drainage to see if it would help me feel better, he basically just said the only option is to do the other kind of chemo they suggested before, for 6 months.  We asked about the drainage and we were able to schedule the drainage for tomorrow.  He acted as if he was totally expecting this to happen, said he was not surprised. 

They wouldn't suggest surgery until after doing chemo to shrink everything that is in there right now. 

I am seeing the Boston oncologist that I liked last time on Monday next week.  I am just holding onto that right now knowing I don't have to make any decisions until I talk to her.

Drainage or Tapping as they call it is scheduled for tomorrow morning so hopefully i will feel relieved after that and the mass near my uterus won't be causing me trouble after the drainage is done or the hernia!

seeing oncologist today

I was finally able to get in to see the oncologist I see in providence today, at 2.  I am in so much pain, it just seems like it gets worse every day and sleeping is the worst, there is no comfortable position except sitting up.  I want to get in to see my Boston Dr but haven't been able to get anything scheduled yet.

It is just terrifying that all this growth happened in a matter of 2 months or actually less because I have had symptoms for weeks.  This is not good at all and I have no idea what the next step is.  I have heard they can drain the fluid, which supposedly is what is causing most of the pain, so we will see.  all the symptoms I had back when I asked for the colonoscopy are signs this was going on and that is so scary!!

Latest CT scan not good

I got a call from my primary DR this morning.  She told me some confusing info and then my aunt was able to run down to the hospital and actually obtain my radiologist report.  The report basically says that I have a mass near my pelvis and multiple nodules in my subdiaphragmatic region as well as fluid in my abdomen.  Originally the nurse said that i had spots in my lungs but according to this it is below my lung so we are all kind of confused.  I am currently trying to get an apt with my oncologist.

I have felt sick all weekend, very nauseas and just not feeling good, I guess we know why. Please pray!

Work and my latest problems

Thankfully work is not on my list of problems!  I have been enjoying my time there and it is not as hard to remember everything and get back in the groove as I had feared.

 I am getting a CT tomorrow that will hopefully show the hernia.  I have a distended stomach and have had one for a while so they want to do a scan to see if I have fluid in there or anything else causing it and the tech said the scan should pick up on the hernia.

Healing Strong Conference

I have been so busy since I got back, catching up from being gone all weekend and also preparing to go back to work tomorrow!  I also have had a hard time formulating a blog entry in my head that gives a good synopsis of the weekend.

The conference (which I will now call a conference and not a retreat) was exhausting, overwhelming, emotional, fun and interesting.  There was a ton of information that was non stop and it was a lot to take in and digest.  I texted my mom at the airport on the way home and told her how tired I was and her response was, oh I thought you would feel rested, hence we are not calling this a retreat!

There was a lot of information about diet and how to prevent cancer from coming back.  There were patient panelists that had refused chemo and shrunk tumors with diet change I think that is so empowering and inspiring. It is a whole life change to follow the protocol they are calling out and I think I could do it.  The problem is that I have no active disease, so I would never know if my cancer  was just not coming back on it's own or if it were the diet.  My tumor markers on my blood work never elevate so it can't be shown there either. 

I think the diet I'm on is a great direction to be going in and I need to be better about a few things.  It was definitely worth attending and it was a great way to network.  I met several women around my age with cancer and I hope we can stay in touch.  One of them actually had colon cancer so that was really cool.  We ended up with a little group of younger people and that was really special for me as I really don't know many younger people with cancer.

I start work tomorrow, it is only for 4 hours so it will be good to ease into things.  I feel like I have been home with my kids for so long (A year today actually that I got diagnosed).  I will miss them and I need to concentrate hard not to say "I need to use the potty" at work and to remember I can't give people time outs when I don't like how they're acting :)  Seriously though, I am excited to get back to work and feel a little more normalcy in my life and hopefully get back into the swing of things smoothly.

I did decide that I want my port out. I have a scan Oct 7 and a Dr's Apt Oct 11th to go over the scan.  I hope to be able to schedule the port removal after that.  It feels like it will be one last step to put this all behind me to get that thing out of me! 

Off to the healing retreat!

I forget if I mentioned that my aunt and I are using first class tickets to fly to the retreat.   I won them through my work last Christmas.  I have never flown first class and I was excited for that aspect of the trip amongst everything else.  We just got onboard and there were little water bottles awaiting us at our seats!  And apparently they serve lunch!  I feel so spoiled!   Off to Atlanta!  I will try to blog if I have time but judging by the conference schedule there won't be much down time.

Drs orders

So after 3 days of trying to get a hold of my Dr I finally got a call back from the nurse.  He still wants me to do a PET scan.  Let me remind you all that PET scans make the patient highly radioactive, so much so that I can't be around my kids for the rest of the day.  Therefore, I will not be getting a CT scan as well, I will wait until another 3 months or until the "hernia" pain is worse.  It really hasn't bothered me since I saw the Dr, weird but convenient since I have this problem with the scans.

I do have to say, every radiology technician I have met is so wonderful and sweet, I swear they are so well suited for their jobs, it makes it so less nerve racking to get scans done.  When I was at the imaging place this week they read something to me at the bottom of the paper that said the patient had a history of colon cancer.  At first this really bothered me, I thought, History?!?  It was less than a year ago, I don't feel as though it's history, although it will be good when I do feel that way if we can keep it away long enough.  But then I mentioned it to my aunt and she said that it is better than the alternative of having it say "recurring" so I guess she has a point, let's call it history. 

On that note, I am still a little uncertain of how to address the situation if it comes up when I meet new people.  I have a hard time attending gatherings where everyone there has no idea what I have going on and therefore doesn't understand why I'm still exhuasted among other ailments that I now have to deal with.  I have a way of bringing it up that makes it sound so uninvasive and casual as if it didn't completely run my life for a year.  I don't want to come across as if I don't take it seriously, cause we all know there is no way not to, but I also don't want to be a complainer and just dump my cancer news on someone.   And I know everyone must have their own personal things they have been through that have shaped them so I know I'm not alone, but Anyway, I don't mind at all, actually I prefer, if you share my story with people so that if they do meet me some day they know a little bit about my "history". 

No MRI

Apparently the radiologist changed the order of an MRI to a CT scan because it would better show possible hernia and my surgeon approved it but they forgot to call me.  So I go to get MRI and they wanted to do a CT but I'm having a PET CT in a month so I said no I dont want more radiation.  I have a call in to oncologist to find out why I'm even getting a PET instead of a CT.  RI hospital says that the PET can not give the cut they need to see possible hernia but CT can.  Very annoyed, awaiting call back.

MRI to check for hernia

I have my MRI today at 3:15 to check for the hernia.  It hasn't been bothering me nearly as much since I went to the Dr about it, of course.  So I'm really curious to see what the scan shows, I will let you know!

Peace, hope, comfort

I received one of many cards from my Aunt Beth the other day.  I really liked the sentiment of this card and wanted to share.
Peace, Hope, Comfort
Wishing you peace...the calm that comes from trusting in something beyond yourself
Wishing you hope...the strength that comes from believing in the possibility that happiness lies ahead of you.
Wishing you comfort...the feeling that comes from knowing how much others care for you.

I feel like there is such strength in this message and it is so true to how my heart feels about having peace trusting in God, having hope that this next year will bring good things and I am always comforted by my friends and family including you reading this!   And thanks Aunt Beth and Aunt Debbie for  all the cards week after week!

Warrior T-shirts are here!

The warrior t-shirts are here!!  I think they came out great, so I need to get organized and distribute them!  text me or email if you want to stop by and pick yours up, otherwise I will mail when I get a chance, if you need my mailing address to send a check let me know and if I don't have your address to mail yours send it!

I had my appointment with the general surgeon today and he said that he definitely thinks I could have a hernia.  He said he could do exploratory type of surgery and go in and see what is causing the pain or he could order a scan to check it out, um yeah option B please!  We tried to see if during my PET scan next month they could do a cut of that area to see if it's a hernia but apparently they said they can't do that.  Now I am awaiting for scheduling to call me to set up an MRI instead.  I am kind of glad because this way I can find out sooner what we're dealing with.

possible hernia and painful port

I had a yearly physical last week with my Nurse Practitioner.  She is the third medical professional I have discussed my scar tissue with and the first to finally hear me.  There is one in particular that seems to get "stuck" for lack of a better word.  It happens multiple times a day and at night.  It is so painful I can barely move and certainly not take deep breaths until it pops back into place.  The NP told me that my description sounded like a hernia and she referred me to a general surgeon to have him take a look.  They might need to do some type of scan to be able to tell, so I'm not sure when I will actually know if it is or not.  I am certainly not excited about the idea of having another surgery but if it resolves this painful problem I am certainly not opposed to it.  I have an appointment with the surgeon on Thursday this week.

My right shoulder where my port is has started to have sharp shooting pains.  It is positional and mostly happens when I'm laying down.  The NP examined me and said she believes it is the port.  The ports can stay in for up to 5 years and needs to be flushed every 6 to 8 weeks.  I haven't really thought about having mine taken out, but I am starting to consider it.  The big deal with this is that if I ever did chemo again I would probably want it put back in, so 2 more procedures verses none if i leave it in.  The more and more research I do however, really puts me in the position of not ever wanting to do chemo again, so part of me feels like it's an easy decision.  My big fear of having it removed is that the drugs they use there do not put me to sleep, unlike the colonoscopy did.  So I was awake the whole time last time, even though I couldn't feel it, it was very traumatic to know what they were doing right below my head and hear and be aware of it all, I will not look forward to that!

I am a few weeks away from my retreat and getting pretty excited.  My shirts should be done on Thursday and I was hoping I would have them in time to wear mine to the reterat.  I will need to get in touch with all 69 of you that ordered one and make sure you get yours after I receive them!