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New in SF with Liver Cancer

tigerjack
Posts: 18
Joined: Mar 2011

Hi, guys... I was diagnosed about 3 weeks ago with liver cancer and I'm still just getting very basic info. Just filled out my advance care directives and in a couple of hours will be having dinner with my partner and the other 2 guys backing him up on the form. I want to keep it upbeat, but I just feel tired... hell, exhausted and scared... and I hate to admit it but kind of sorry for myself. Mostly I've been OK, just putting one foot in front of the other and doing my work, whatever needs doing, but sometimes I'm all over the emotional map with this. Was hoping to get into the chatroom, but it seems to be hung up... oh, well...

Sometimes I feel very alone with this, but I'm not ready to tell most of my friends and colleagues yet. I'm getting closer to the point where not telling people is getting harder than the prospect of everyone knowing. I'm slowly building a support network, but especially with my work I get a lot of new age-y types and people who are sure to bombard me with all kinds of crazy advice. And I don't really know yet what's going on. Waiting to meet with a panel of doctors in a few weeks to discuss the best course.

Anyway.... these feelings come and go. I'm just feeling very lost and alone right now. This will pass. Guess I just need to vent. Next Thursday there's a support group for gay men with cancer and I'm looking forward to that. There's also a more general survivors' support group that was off this week... I'm OK really, just part of the adjustment process and having a rough day.

tigerjack
Posts: 18
Joined: Mar 2011

After all that whining I guess I should introduce myself a little more properly. I'm a 56-year-old long time San Franciscan/Bay Arean (5 generations) been with a wonderful guy for nearly 17 years and we have 2 little dogs. I'm very active in politics and my professional community, so I'm plugged into networks where any news gets around pretty fast. Aside from my work I love the opera and traveling. I'm a recovering alcoholic wit 25 years of sobriety and I've had HIV for over 20 (maybe over 30) years, so what's another life-threatening condition? I'm a survivor and intend to beat this, too. It just takes some getting used to.

Trapbear's picture
Trapbear
Posts: 88
Joined: Sep 2009

HI Tigerjack,
Welcome the club no one wants to be a member of. I am caregiver for my partner of 24 years. He has stage 4 colon cancer, Dx in Dec 07, and has been undergoing some kind of chemo for the past 3 years. His disease is stable at the moment and we try not to let it rule our lives. We live in the Bay Area as well. My partner and I also love opera, he sings, is a counter tenor. Anyway, any idea on whether surgery is an option? Is your cancer local or advanced? Hang in there and let us know how it goes.
Bill

tigerjack
Posts: 18
Joined: Mar 2011

Sorry about your partner, but it sounds like he's doing well, all things considered. Does he perform? (MUSICALLY, I mean!) I love counter-tenors, am mad for David Daniels and Martin Oro. I'm on the A series (Tuesdays) at SFO, subscribe also to the Berkeley Opera, and try to keep up with Oakland Opera Theater (a very good CT there in Akhnaten not too long ago) and other local companies.

Just diagnosed I still don't know much of anything about my liver cancer. More tests on the 15th and meeting with a team of doctors on the 25th. From the report I was given I seem to have one principle tumor and some smaller ones. I read that makes it stage 3, but still have no idea what that means in terms of treatment or prognosis. I'm not feeling any pain at least. Sometimes my liver just reminds me that it's there... not painful, but I feel it, if that makes sense. My doctor says there's no swelling.

Do you and/or your guy ever get to "Jeffrey's Place"? It's a support group for queer men fighting cancer at the SF GLBT Center 1st and 3d Thursdays. I'm going for the first time tomorrow.

Yeah... not letting it rule one's life... I know from AA & HIV how that works. Going through the adjustment period and learning how to deal with the specifics of THIS life-threatening condition, getting perspective, and preparing to "come out" about it beyond the very tight circle of folks I've been telling on a "need to know" basis. I'm very involved with different professional, political, and spiritual communities/networks, so there will be a point where hundreds of people will find out and you know how awful people can be even with concern and kind intentions. I'm hoping to keep it quiet at least until I get some answers on the 25th.

Thanks for responding. I'm still feeling lost and confused with this so connecting personally with other guys who are dealing with it means a lot to me.

Jack

Trapbear's picture
Trapbear
Posts: 88
Joined: Sep 2009

HI Jack,
No, we have not gone to Jeffrey's Place. Let me know how it goes tonight. We had a friend who died from colon cancer last Nov who attended, he and his partner got a lot out of it. It is affiliated with UCSF I think?

We have a weekend place in Mendocino county and my partner performs with a local choral group and with the local musical theatre which puts on a musical every summer. He really enjoys it! We were season subscriber at SF Opera for many years but quit about 5 years ago, just tied up too many weekends in the Fall. We now pick a few to attend each season.

I hope you get good news from your oncologist and other doctors later this month. I know how scary it is waiting for results, etc. Hang in there, you will be fine.
Bill

tigerjack
Posts: 18
Joined: Mar 2011

Hi, Bill --

Jeffrey's Place was rather nice. Actually it's affiliated with Shanti. There were 2 facilitators, one a leukemia survivor, and two other guys plus myself. One of the other men is recently diagnosed with prostate cancer and there for the first time also. The other was surviving... I forget what kind of cancer, and had been through his last chemo 4 or 5 years ago. Small group, but that gave us all a chance to speak up. It was just big enough to work out pretty well. I'm looking forward to going back in a couple of weeks.

Waiting for results is more annoying than scary. I'm getting impatient, wanting to know WTF is going on and what can we do about it. My life is on hold.... well, some aspects of it. There is still work to be done, I don't long for purpose to fill my empty hours, but still... Like I was supposed to organize a pride parade contingent and I can't do that... And I got tickets to the Ring; will I be able to go? Selling them wouldn't be a problem, at least. I'm also very tired a lot of the time. Don't know if that's from emotional exhaustion or what, but I am getting affirmation that, yeah, adjusting to this new reality does consume time and energy. It's like a new full time job on top of everything else in my life.

My mother-in-law is coming to visit for a couple of weeks. She'll have to be told, much as I'd rather wait, but I can't live with the "elephant in the room." (It's already hard enough in general life, but I want to know more before I come out of that particular closet.) My husband says she can be trusted to keep it quiet, but with that family, once it's out, it's OUT! And so many of them are on Facebook and popping up on my wall where all my worlds seem to intersect. Guess I can go fiddle with stuff to see how I might limit that damage.

Let me know any time you guys are in the city. It would be great to meet you. Sounds like you are making the most of it, and it's good to see examples of life continuing well in this situation.

Jack

Trapbear's picture
Trapbear
Posts: 88
Joined: Sep 2009

HI Jack,
Just checking in to see how you are doing? Maybe you now have a treatment plan?
I hope you are doing well and that the visit with the MIL went ok.

Sending you big hugs,
Bill

tigerjack
Posts: 18
Joined: Mar 2011

Hi, Bill,

Doing OK, thanks, but dealing with SFGH has been a nightmare. It's such a bureaucracy. Everyone has a different story and I've been knocked for so many loops I wonder where the hell is Temple Grandin when we really need her? Thursday afternoon I got a call saying I had to get to SFGH to pay $200 to have my "procedure" on Monday. The money is not unreasonable, but why such short notice for the billing? And then when it came up I have Cancer I had to go get on medi-cal. same time frame. this is f---ing insane.

Anyway, my experience with public health in SF is that the medical staff and care are pretty good even if the bureaucracy is kafkaesque. Seriously, I've had simpler times dealing with bureaucrats in Italy, France, and the Soviet Union and easier access to health care in Romania!

So I go in Monday for the chemo-embolization. The nurse practitioner I talked with this Monday seemed to think I'd be back on my feet in just a few days. The plan is to get the tumor small enough to qualify for a liver transplant, and I'm told that is usually available with about a year-and-a-half wait. Also checking out "alternative" therapies and feeling optimistic in the long run.

So how are you and your guy doing?

tigerjack
Posts: 18
Joined: Mar 2011

Hi, Bill,

Doing OK, thanks, but dealing with SFGH has been a nightmare. It's such a bureaucracy. Everyone has a different story and I've been knocked for so many loops I wonder where the hell is Temple Grandin when we really need her? Thursday afternoon I got a call saying I had to get to SFGH to pay $200 to have my "procedure" on Monday. The money is not unreasonable, but why such short notice for the billing? And then when it came up I have Cancer I had to go get on medi-cal. same time frame. this is f---ing insane.

Anyway, my experience with public health in SF is that the medical staff and care are pretty good even if the bureaucracy is kafkaesque. Seriously, I've had simpler times dealing with bureaucrats in Italy, France, and the Soviet Union and easier access to health care in Romania!

So I go in Monday for the chemo-embolization. The nurse practitioner I talked with this Monday seemed to think I'd be back on my feet in just a few days. The plan is to get the tumor small enough to qualify for a liver transplant, and I'm told that is usually available with about a year-and-a-half wait. Also checking out "alternative" therapies and feeling optimistic in the long run.

So how are you and your guy doing?

Trapbear's picture
Trapbear
Posts: 88
Joined: Sep 2009

Hey Jack,
Just read this today, Monday, so I hope the procedure went well and that you are back on your feet soon. Sorry to hear that you are having so much trouble with the bureaucracy in SF, we went through similar hoops applying for disability, etc.
We are doing pretty well, we had a scan last week, no new lung nodules and the ones there are still stable. So we continue chemo, scan again in two months.
Hang in there, and hope you are feeling better soon!
Bill

tigerjack
Posts: 18
Joined: Mar 2011

Glad to see things are going well for you. The procedure seemed to go well, but I guess there will be tests to make sure. I'm feeling pretty lousy, but each day is a little better. That's all to be expected, and as long as I feel improvement it's all good. After I got out of the CE the doctor told me that they want to give me a high frequency radio ablation in June. That's a surgical procedure that could be laproscopic, but they haven't figured that part out yet. Also a couple more CEs for the smaller tumors.

Stay strong!

j.

tigerjack
Posts: 18
Joined: Mar 2011

Glad to see things are going well for you. The procedure seemed to go well, but I guess there will be tests to make sure. I'm feeling pretty lousy, but each day is a little better. That's all to be expected, and as long as I feel improvement it's all good. After I got out of the CE the doctor told me that they want to give me a high frequency radio ablation in June. That's a surgical procedure that could be laproscopic, but they haven't figured that part out yet. Also a couple more CEs for the smaller tumors.

Stay strong!

j.

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