CDC Symptom Diary Card

Wednesday, May 08, 2013

Living With Tumors

I had my Doxil last Tuesday. Somehow the extra dose of anti-nausea meds on Saturday and fluids did not stop yesterday's crash. It was really warm in Seattle, but I was just a mess, really sweating, huge headache, terrible nausea. I was bed bound all day.Thank the Lord my sister woke me up to see how I was doing. I have been trying to re-hydrate and settle out a bit.

So I feel weird right now, but really wanted to share some updates and thoughts....and apologies for the typos....sorry. I am unable to add links right now, will edit and add when I get to a computer.

My latest CT scan shows that tumors are not growing and not shrinking. Since the last CT scan, there are no new tumors. I did up a little chart and compared notes and I think I have 9 tumors with a couple of teeny tiny mm size nodules on the lungs. The tumors are mainly 1-2 cm in diameter. The radiology reports do not follow exact same format, so this information may be off a little, sorry. The report says that I have peritoneal mets, but no new tumors and so far it is stable.

That is great news, but also kind of disheartening. My gynonc is just really going to bat for me, and we are doing several more rounds of Doxil and then maybe switch to Avastin. Avastin would slow or stop the growth of blood vessels that feed tumors. My fatigue is through the roof, still have never ending upper abdominal pain, and the new strategies to help with panic disorder have just begun.

All I want is quality time with those whom I love, a break, a chance for us to play, a leisurely warm ride on a boat, anything. Between myself, mom's heroic efforts to live each day and all the regular stuff families do, plus I do need to work, will we ever have that? Not to be selfish.......cannot talk about that.

if you have cancer and start out on the lower rungs of the money ladder, it is not easier. That is a different discussion..........

I am remaining hopeful about my treatment. My choice is to have hope or not have hope. I choose hope.
My gynonc said that there are people who live with tumors. I can do that.

The trick is if we stop Doxil, what will happen? Will my tumors start growing again and if so how fast? I have been on chemo since Jan/Feb 2012 for my recurrence and the side effects are beginning to take a toll. I am way too immunocompromised to get a stronger chemo or higher dose and my complicated medical condition precludes me from participating in any clinical trials.

My gynonc's nurse said that I have lived longer than expected.....I take that as a positive, the family "tough gene" that says never give up, no matter what. I did not ask her more, maybe next time.

I was finally confirmed two weeks ago, and my sponsor was Sr. Marie Giovanni Paulo. She dedicates her life to God every day. She is a sister of S.O.L.T. The convent is affiliated with St. Alphonsus Parish in Seattle. I feel very blessed. Tonight I requested a lay minister because I sleep too long and just cannot wake up for mass.

With prayer and her guidance, my confirmation name is Denise Raphael.

I mention this because faith knows no bounds and I was led to Sr. Marie for a reason.

World Ovarian Cancer Awareness Day is marked this 8th day of May, 2013.

I am praying that after reading this post that you and your loved ones take a moment to learn more about ovarian cancer.

Since 2009, when I started down this road, the grasses are greener. More people want to solve this deadly problem. The best cure for cancer is prevention, but in our case, we need more than that.....there is no prevention.

Raise awareness but also please donate good money towards research and help your sisters in need.

God Bless you

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