Even with my daily journal, I need to share, to vent, to maybe encourage others this is all possible. As the ONC-PA said, I have active cancer, but with the right treatment, I can live with it. So live with it I will.
nynessie wrote:Diagnosed in late May with Rectum Cancer, spread to ovary. Then came diagnosis of colorectal cancer (sigmoid almost completely cancerous), with adenocarcinomas to rectum and ovary. Then came possibly of two separate cancers - colorectal and ovarian. Second opinion determined no ovarian cancer. Also determined that there are cancers through my peritoneum, on abdomen wall and intestines. Ctyoreduction surgery was mentioned, but was not to be discussed until another 3 months of chemotherapy.
I had 10 weeks of FOLFOX, including 3 weeks with Avastin. Then blood counts were too low to continue. A CT scan showed increase in masses on rectum and ovary, and increase in the peritoneum cancers. In other words, it did not work.
Will begin FOLFIRI+Avastin next week. I am also dealing with a blood clot in my lung, so now put on drugs for that. Will not know if I will also be on Neulasta, will find out next week. All of this has happened in the past two weeks. The CT scan, the 2nd opinion, the change in chemo, the finding of clots.
Today I finally was able to go to the doctors appointment without my husband, so I could ask for the truth, ask that everyone be honest and straightforward with me, as I was finding it extremely difficult to continue living with possibilities, and not finding any answers. I was told, only after being asked several times if I really wanted to know, that there was not a surgical option, that I would likely not survive surgery, and that I was on Palliative Care.
I felt a huge weight lift from my shoulders. Yes, it was difficult to finally hear what I had suspected since May. But finally someone was willing to tell me. It was as if the entire staff, the whole team, had a weight lifted as well, because suddenly it was me they were treating, and not cancer person.
My husband does not know. He might know, but he is the sort of person who will hang on for the positive, for the cure, for the long life. I will not tell him that I was given this diagnosis, and that who knows how long I really have, but the best guess is at least 2 years. Then again, I'm h=just stubborn enough to double that.
I am waiting on a referral to a counselor, and will begin meeting with them. I need someone to talk with about this.
In the meantime, there are so many questions I have, and no answers. Not physical, because I can ask more openly now, and expect everyone to be honest with me, and not tip-toe around me and what I should or should not be told.
I'm sharing this with you all, as I have been lurking about this site for months, and finding out so much useful information, and now reach out to find out what I do now, what next steps to ensure my family is cared for, how to get things was for them, and how to know how best to spend what time I have left, whether it's months or years. I want each day to matter.
I hope the FOLFIRI+Avastin will work, and will kick some serious cancer to the curb. I'll do whatever I need to do to se my daughter as the lead in the high school play, to help her pick out her senior prom dress, to see her receive her high school diploma, to move her into her college dorm room. I'm fairly sure I will not see any of my four kids married, or hold grandchildren, but I sure as hell am going to try. I know I will need some help in keeping up with this ambitious plan, and know I can rely on everyone in this group. Thanks for being there.
Not sure I mentioned it already. Avastin was removed from my treatment. My current ONC said she didn't want me taking it as I take a daily coagulant. She then said she'd like to "keep it inter back pocket" for the future. Huh.
Another CT/Scan was to be this week. My current ONC told me she was pushing it off to "maybe next month" without explanation. She told me she wanted me to see my GI, and now I have an appointment with him April 24. (Note, this is on day 2 of my treatment so I get to go to this appointment with my 5-FU pump. Oh Joy.)
My March CEA was 4.6 (down by .1) and the scan (of January 7) showed the mass(es) were decreased to about 8cm. Left and Right. My current ONC was unable, perhaps unwilling, to explain what "left" and "right" actually referred to. I asked in January, again in February, and didn't bother in March.
Explanation: When I say "current ONC" I mean this is the third ONC I have seen at my hospital since June 2018. There is one ONC and an ONC-PA here, and yes, they are too few for the number of patients, yet, for me, it means having a new person on my case every 3 months or so. I doubt this one will stay. This current one holds her cards close, not sharing with me much.
My husband tells me this is good, as she is not willing to tell me something that she is not sure about. For him that's fine. For me, it causes anxiety. Why are we withholding Avastin? Last time (ONC #2) pulled it because he believed I was a possible candidate for surgery. She's holding it back for later? I was not experiencing any issues with the drug and my coagulant. But hey, she has her reasons, I guess. Why skip the scan? Why the sudden need to see my GI, who I have not seen since June. No answers. To be fair, she did say she was concerned about some bleeding, but I know it is my hemorrhoid, and have explained this each time we meet. She might have other reasons, but once again, asking doesn't get me answers.
My husband tells me that each time a new ONC comes in it is a new set of eyes. Another opinion. Like getting a lot of "second opinions".
Frustrated, and anxious, and yet managing. This week I joked that I was covering for the person who was covering for me. Which is exactly what happened.
Other news: my therapist, after months of discussion, finally got me to get my medical-cannibus license. I now am on a very low dose, and I have to admit it is helping me with my anxiety. I drive 140 miles (one-way) one a month to get the prescription filled. It's also not covered by insurance, and is expensive. But if it helps me sleep at night I am all for it.
This weekend is my daughter's final theater show (she's a high senior, this is her 8th show) and we have guests here to see her. I'm enjoying the weekend. I'm totally enjoying this weekend.
Next treatment is Tuesday. it will be the 13th for FOLFIRI and the 18th overall.
Thanks to you all for this group. Even with my daily journal, I need to share, to vent, to maybe encourage others this is all possible. As the ONC-PA said, I have active cancer, but with the right treatment, I can live with it. So live with it I will.
Pyro wrote:Forgive my ignorance, but aren’t all stage 4 people that cannot be cured (most) technically on palliative care?
teresajj1 wrote:Has anyone mentioned or suggested cytoreductive surgery as an option yet?
I guess, to answer my own question, we would qualify for palliative care.