We would like to thank Lisa for allowing all of us to learn from her experiences with lung cancer.  Throughout the duration of her disease, Lisa was open with her experiences, thoughts and emotions to help others facing lung cancer understand what to expect.  If your life has been touched in any way by Lisa’s story or by lung cancer in general, please feel free to comment on this entry and leave messages of support. Thank you.

Our thoughts and prayers are with Lisa and her family.

I’m still trying to find the medication balance that will keep me comfortable without undue nausea or sleepiness.  It’s Monday morning and the sun is shining and aside from a wee bit of nausea I’m not doing too badly so maybe we’re on the right track.

Although that’s really the point of this short entry - that there really isn’t any “right,” just the best we can do.  It is a blessing for me that there are so many people trying so hard to do the best they can do for me.  We’ll just keep doing that — one day at a time.

Why is Hospice wonderful?  Because I am relaxed and at ease right now after my visit with them.  Because I feel more in control of my situation.  Because they are helping me figure out how to make this transition from active to not active, a transition which is happening much more quickly than I could possibly have imagined, less scary and sad than it was being just a few hours ago.

I have taken care of my leave paperwork and Social Security Disability application and am working on long term disability and insurance premium waivers, so most of the administratrivia is behind me and I can just enjoy the holiday season.  One thing staring death in the face has done for me is nudge me to be much more prepared for that than usual.  No Christmas tree this year, which is very strange, but we have lovely greenery and decorations in the family room, where I spend all my time, and we’ve already had a couple of snows so it FEELS like the holidays, even without that tree.

Thanksgiving was wonderful.  My #2 daughter flew in early on Tuesday morning and she and her sisters made their first Thanksgiving meal on Thursday while I looked on from the recliner in the family room.  It was fabulous!  It definitely ranked in the top 5 Thanksgiving meals by quality of food AND family enjoyment that I have ever had.

Graduate shool daughter headed back very early Saturday morning and I hit the recliner to rest and recuperate.  However, for some reason my pain started escalating to a remarkable degree and by the time I went to bed Saturday night I felt like I was dying.  Everywhere.  My temperature was up a little bit, but no fever and there was nothing else to tell me what was going on.  I skipped dinner and hit the sheets, waking up Sunday not much better.  Sunday my severe pain had localized to my left mid back - a new spot for me - and I called the doctor on call to see what to do.  We increased my pain meds and today that new pain is the only pain that is bothering me and it is manageable.  But I called the oncologist’s office this morning to get new pain prescriptions and to ask the for the Hospice referral.  They will be out Wednesday and the next phase of this disease starts for me.

I don’t know what happened this weekend and I admit to being scared - afraid that everything would spin out of control and I would die hard, fast and furious.  I didn’t, of course, but I’m looking forward to being scooped up by Hospice and their support and services.

The overwhelms seemed to have passed for this time.  I hope the next update is to report a smooth transition from active care to Hospice and best supportive care only.

I’ve decided to beg off that last chemo treatment that we had scheduled for December 1st before the scan on December 8th.  I felt so poorly after the last one that I’d rather just get the scan and make a decision about further treatment when we see what disease is doing.  I know I keep saying this is coming and then putting it off, but the rapid progression of the weakness and fatigue over the last month makes me feel like both total disability and Hospice will be fully in the picture by the end of the year.

Honestly, I don’t even know how to describe the weakness.  How can it take so much out of me just to sit down to the computer and compose a post?  Take a shower?  Walk across the room - not to mention going up a flight of stairs?  Can the tumor really be stealing so much from me metabolically?  I guess so.  But I really don’t like it.  Finally, after all this time, I’m finding myself sad and angry at the same time with nothing to do but whatever the disease allows me that day.

One day at a time.

So I’ve been trying to be very good about not pushing myself, resting when I can and just doing what I feel like doing, rather than what I feel like I SHOULD be doing.  I did reduce my steroid dose this week at the same time as I increased the oxycontin and, with no ill effects, I’ll keep experimenting very gradually with that.

I’m still working, cutting out the next quilt, and busy planning Thanksgiving.  My daughters want the experience of cooking their first Thanksgiving meal all by themselves so I plan to sit myself in the recliner with a megaphone and spend the day giving orders.  It should be great fun.

Tomorrow is the National Free to Breathe event and I’m overwhelmed to see that the team formed in my honor has raised over $8000 to date.  I hate that research for the number one cancer killer of men and women is so woefully underfunded and am grateful to the National Lung Cancer Partnership and every single individual and group who contributes time and or money to the cause.  I wish I could walk with my friends and supporters tomorrow, but that is one of the things that this cancer has taken from me this year compared to last.  So I will just say thank you with all my heart and let you know that I am there in spirit, cheering each and every one of you on.

I saw my oncologist for Gemzar and Zometa on Tuesday and have had no significant problem related to those this week.  I’m still on fairly good doses of steroids because I wanted to feel as good as possible for my trip and then will wait until my off week from Gemzar before I try another dose reduction (next week).  If I feel worse with the lower dose we’ll go back up to where I was before any dose reduction and see if it helps the fatigue.  If I feel better, we’ll keep trying to reduce the dose.  I’ll get two more doses of Gemzar (for a total of eight) and then I have a scan scheduled on December 8.  I don’t expect any good news from the scan - you all know that I don’t really think any of the treatments (except maybe Zometa) that I’ve received since I came off the original Carbo/Taxol/Avastin in August 2008 have really done much about my cancer.  It’s just a slow growing, mostly in-the-bones cancer.

But it seems to be affecting more than the bones now, with the fatigue and swelling, and I’m feeling demoralized and worn down.  I still have many things to keep me going at this point - quilts, Thanksgiving with my family, visits from friends and family - but I’m feeling less sure, less optimistic about how much of that will really come to pass.  I’ll keep putting one foot in front of the other and see where it takes me.

That’s a big difference!  In fact, I will reach the Zometa group’s overall median survival on Sunday.  My oncologist started me on the Zometa months ago when I started to develop new bone lesions.  As you know, I’m on pain meds to control the pain, but we’ve continued the Zometa to try to prevent more new bone lesions and to delay time to fracture of any that I have.  At least a part of me feels like the Zometa is playing a significant part in keeping me alive and keeping me active.

Which brings me to the good instincts part of this post.  When I was first diagnosed I was referred to a local general oncologist.  He recommended the current gold standard chemotherapy - carbo/taxol/avastin.  I then started the process of getting a second opinion from a large cancer center.  They were very supportive of using Tarceva first in nonsmoking women.  My liver function tests started to deteriorate rapidly and I decided, with the original oncologist, to proceed with classic chemotherapy.  Since then it has been shown that patients who don’t have the EGFR mutation (I don’t, but we didn’t know that at the time) actually do worse when treated first with Tarceva.  So my oncologist has made two very significant decisions regarding my care based on what was incomplete information at the time but what turned out to be very good instincts on his part.

So much of this cancer story is luck and biology.  Once the really bad luck part got me (being diagnosed with stage IV lung cancer to begin with), it’s nice to have gotten a couple of breaks on the luck side in treatment and survival.

Next, we went through emails, path reports and consults to make sure my tumor had been tested for every single mutation that might qualify me for an active phase II or III trial for my cancer.  It has.  Not eligible.  Phase I is all that’s available.  I haven’t ruled that out, but I’m not inclined to put a whole lot of energy into either looking for phase I trials or, especially, committing a lot of time to participating - either for travel or treatment.

Finally, I clarified with him what the steroids are currently treating and we talked about the side effects I’m experiencing - proximal weakness (difficulty getting up out of a chair), weight gain and moon facies.  I’m going to very gradually try decreasing the dose to see if I can find a dose that will control the nausea (it also helps with the bone pain) but lightens up on the side effects a little.  That’s a 25% reduction per week, so I’ll let you know how that goes.

So I went to the back for my Gemzar.  My chemo nurse hooked me all up and after a while sat down for a chat.  It was really quiet yesterday afternoon, unusual for a Tuesday, and I was her only patient.  She was taking the opportunity to talk to me about what I’m thinking and feeling these days while I was alone.  She said she almost never gets to do that because so much of the time families are in denial about their loved one’s terminal cancer up to the very end.  I explained to her that she really doesn’t have to wait to ask me these questions while I’m alone because I won’t let myself or my family be in denial.  Granted, my family’s had more than a little experience with terminal illness - my mother’s been a hospice nurse and my sister lost her husband to leukemia - but even if that were not the case I would feel that it was my responsibility to be a truthteller for them.  I have incurable, terminal cancer.  It is progressing.  It will take my life in the foreseeable future.  So, meanwhile, let’s have some fun.  Let’s enjoy each other, eat well and laugh.