Didn't you know? Chemo is toxic!

I just met with my oncologist here in providence.  He did speak with my dr from dana farber.  He seemed perfectly fine with my decision and also mentioned that the IV chemo they wanted to use has a high toxcicity and he sees why waiting and watching was recommended by Dana farber drs.  I also ran into my colorectal surgeon at the hospital after and he was very happy to hear my decision and told me twice he is so glad that I decided not to do anymore treatment.

Speaking of chemo being toxic, I am in the process of registering to attend a holistic cancer conference and retreat in Atlanta in September.  My aunt who is an ovarian cancer survivor agreed to go with me.  I feel like it will be a good thing for me since I am not doing treatment now and I am using diet to help keep the cancer away.  The conference will have cancer survivors that didn't use chemo and are now cancer free all through diet.  I am excited to meet and spend a weekend with others who have traveled a similar path and I am sure have some advice and knowledge to share!

summer!

I have felt the need to blog but I don't really know what to say.  I have a call into the dana farber Dr as of this morning to see what her colleagues thought of my case.  I also have an apt to see my oncologist here in providence on friday.  I spoke with him last week and he seemed to think it was very reasonable to do the wait and watch approach at this point.  He also agreed a scan mid july was a good plan. 

I feel so relieved that summer is finally here!  I had my first real beach day and discovered my almost 2 year old is terrified of sand!  we had him touching it in no time but it was a great thing to watch, my kids are always surprising me.  I hope to go back to work in September.  I am still taking naps and feeling tired, but I hope to be feeling really good by then.  That will be about a year since this all started and that seems so crazy to me, who knew that I would be spending a whole year like I did. 

I still feel so blessed.  I have the two most beautiful children in the world, I mean what are the chances right?! How did we get so lucky?? ;)  Thanks to my neighbor who took these pictures of my little ones. 

I think one of the hardest things through all of this is to just be with them every day and think that I might not get to see them grow up.  I know I shouldn't be thinking that way but it is impossible not to go there once in a while.  I have heard recently that there are some people that find it too hard to read my blog.  I totally get that, but I just wanted to say that I appreciate everyone who does and continues to support me.  I need you all, you are what get me through the rough patches and I know as rough as these last 10 months have been, there is so much more to face.  Stay with me!

Happy dance?!

I met with the medical oncologist from Dana farber today.  I am currently in the car on the way home and thought I'd blog as we are stuck in ridiculous traffic.  I was a little nervous when in the waiting room there were 1,000 to 1,200 piece puzzles.  Really?? I have time to work on a thousand piece puzzle?? Man I should have brought more snacks!  We only waited a little over an hour so that wasn't  bad, I know the dr had to review all my scans and records and they always do that right before they see you.

She surprised the heck out of me with her opinion!  She did say that she would bring me up with her tumor board and call me next week to tell me their thoughts so I will anxiously await that call.  She said that she does not recommend any treatment right now.  The data that is out there does not prove that doing more chemo would in any way cure me.  She said that it would possibly delay reoccurrence but not prevent it.  She has a suspicion based on my scans that the metastasis on the ovary was there from the beginning.  There is a scan in October where the area where my left ovary is, there is area lit up on the PET scan.  This could be something from my colon having to do with my surgery but could also have been cancer in my ovary.

Since I just finished treatment and did all 12 rounds (like a champ) she doesn't see the benefit of doing chemo right now.  She said she would recommend chemo if she thought it would make a difference but she does not see it beneficial right now.

We haven't made any decisions to switch my care to Dana farber.  This dr spoke very highly of my oncologist in providence.  She was perfectly happy to consult with me as I felt necessary and see me when I want her to.  She also said she would discuss her recommendation with my oncologist.

I myself am trying to figure out why I am doing a happy dance when I just heard I probably am not cured and chemo won't cure me but I am just grateful to get a break from treatment.  I am almost positive I will do chemo again, when there is something there to treat.  I am trying a no meat, no dairy diet for a while.  all those veggies fight cancer and I feel like I'm doing something to treat those microscopic cells!   i just need a break.  I need to be able to enjoy my vacation, enjoy my kids and live just for a little while.  I should be getting a scan in July and that could change everything but for now let me just live.

kayaking for a cause

I have spoken at least once about a support group that I attend once a month for women cancer survivors.  I have found it really helpful as part of my journey.  There is a fundraiser Sunday June 23rd that I will be attending for the Healing Co-op.  It is a kayaking fundraiser and should be fun!  check out the link below and come if you can!

http://www.thehealingcoop.org/2013events.html

Dana farber

I have an apt Monday next week to meet with the medical oncologist at dana farber recommended by the surgeon that I saw last week.  I feel like I have pretty much settled on doing the IV chemo but want to hear what this next Dr has to say.

I also got my genetic testing results.  There was nothing useful with those.  This is good and bad news.  There is nothing to help the drs use for targeted therapies but also means my kids aren't genetically pre disposed to my condition.

I Was hoping to get in earlier than next week to Dana farber so I could plan more for our upcoming vacation but we all know that things don't always work out how we hoped!

3rd opinion

We saw the top colorectal surgical oncologist at Brigham and Women's today.  He is very against HIPEC for my situation.  He believes there is no evidence to prove that the HIPEC would work for colon cancer.  He believes what I had with the cancer going to the ovary is called a Krukenberg tumor.  It isn't necessarily a metastasis but part of original disease where the cancer cells were in the ovaries when I had my original tumor.  This goes along with my theory I had before where there were microscopic cells in my ovaries when I had my colon resection.  They were resistant to the chemo and hid out and then we saw the cyst on the ovary after the chemo was over which led us to the cancer there.  He does not recommend radiation unless I had a recurrence in my colon where they reconnected my colon.  He stated that the peritoneum is not necessarily a place for colon cancer to live like the ovaries were. 

His suggestion of treatment is to do the 6 months of the next IV chemo.  He recommends doing it without the 5FU drug which means I wouldn't have the pump on for 2 days after the infusion like I did last time.  He said that the primary tumor can suppress microscopic disease and once it is removed the microscopic cells can spread.  He said that if I were to do this option I should do it 6 weeks after the surgery I just had because it would be most effective.  This is something I have been against since the beginning but I have to say he was the best salesman so far of the IV chemo.

He also suggested doing sigmoid oscopies every 3 months after my colon resection surgery which my dr as never recommended.  I was just told to get another colonoscopy a year after my colon resection.  He also mentioned that having colon cancer I am at a higher risk of uterine cancer.  So he suggested years down the road having my uterus removed. 

I am considering switching my care to dana farber/brigham and womens.  I wouldn't see this dr because he is a surgeon but someone else on his team.  We will meet with them next week.  Lots to think about.  To end on a good note, he said that he has seen this happen before where there was never anymore disease, and that there is a possibility of me being cured!

thankful list

I finally heard back from a Dr I have been calling in Boston and I have an appointment on Wednesday! So I think this is a start to a thankful list that I have been wanting to post. I am so thankful for my mom. She has been so awesome since all this started and during this stressful time where I am not able to make a decision. She insists she isn't phased by the fact that she has no idea what her future holds since she will continue to stay here and help me if I choose to do more treatment. I am thankful for all the friends and family who sent me suggestions of Drs to see in Boston. I am thankful for my kids who are the ultimate distraction from my disease and who I can get lost in play with which allows me to escape from my stressful world. I am thanful for my aunt who has already been through this journey and can share her experiences with me and encourage me in only the way someone else who has been there can.  I am thankful for husband and my cousin Rachael who is like a sister and is my patient advocate. Rachael and Bryan attend all my Drs appointments and are doing constant research on HIPEC. They are my "board members" and we have started holding meetings to go over our research and options on my treatment process. I am thankful for all my friends and family who are in constant contact with me and make sure I'm okay after I make depressing blog posts :)

I am still considering doing the HIPEC but then when to do it is a big question.  I would love to be able to enjoy some of my summer and not worry about my incisions and swimming and of course my energy level.  we have a vacation planned in July that I would like to go on but that of course depends on if and when I do the HIPEC. I am not sure if its better to get it over with and maybe still enjoy my summer or if it will ruin my summer to dread the HIPEC the whole time.  Or will it ruin my summer to be scared I have cancer growing in me, or will i still be thinking that even if I get the HIPEC, did it work, was it worth it?

I have read about a lot of cancer survivors who have felt that cancer changed them for the better and that they wouldn't change their life if they could. Of course these are people who are disease free and are able to take away positive aspects of fighting cancer and their experiences. I can't say that I am there yet, I think I need to win at least one battle before I can declare anything like that. I do however, have to say that I have learned a lot through this experience which I am grateful for. I have learned how precious life is and and how important friends and family are. I have learned that even when you don't know what to say to someone who is going through something like myself, calling or texting or emailing anything at all is better than saying or doing nothing. As long as your heart is in the right place that is all that matters.