July 12th, 2010

I really do apologize for the long hiatus! Between a short stint up to Maine to see family and dealing with a whole new level of exhaustion due to low hemoglobin levels (low oxygen levels), I have been terrible about keeping up! On the other hand, being back in the office (and now permanently in the Toxic Release Inventory Program at EPA), I am finding new energy where I didn’t think there was any left!

Thanks for the questions on the MRI. It’s actually a rather astounding thing. Turns out the two brain tumors which were radiated (full brain radiation as opposed to specific radiation to the two tumors themselves) are now half gone! The 3.5 cm tumor is down to 1.6 cm and the 1.5 cm tumor is down to 0.8 cm. Go figure! It didn’t even occur to me that these tumors (which were stopped by the radiation in March/April) could actually disappear. Wow! The oncologist’s words are that the recovery is “remarkable.” That’s the most positive we’ve heard her yet.

I hope you will let me be brutally honest here. That having been said, she is sticking with the life prognosis of 5-10 more years which is what she gave me in February. The lack of predictability in the case of cancer makes a reliable prognosis very tough. IF all signs of cancer go away (i.e., no evidence of tumors), she said she would consider a longer prognosis. I guess doctors have to be careful. In any case, the battle is far from over.

I don’t want to sound like I’m complaining, but do have to acknowledge that there are on-going issues that continue to suck up energy. The first is my hearing loss. It is hard to imagine how tough it is to function when you only have 20% hearing in one ear until you’ve lost it. NPR had a wonderful story this morning about a woman who’d lost her voice and hence her job and joy in getting together with others. Blessedly, the doctor was able to relieve her muscle tension and she regained her voice in 7 minutes. It was remarkable. I am in my 2nd month of hearing loss and am not expecting an equally spectacular recovery. That having been said, it does offer a good cover for ignoring complaining children.

My low hemoglobin (oxygen in my red blood cells) has dramatically lowered my energy levels. They have me on high levels of iron, but I guess the chemo must counteract it. In any case, it makes things I’ve taken for granted, like swimming, really tough. It’s also hard to stay awake, although I seem to be doing OK at work.

Finally, the cancer continues to make itself known in small ways to remind me that it’s still here. This weekend I had 10 minutes of excruciating pain in my spine. I’ve had similar short episodes in my lungs, brain, lower back, etc. The official assessment has been either “radiating pain” (pain coming from some place else) or nothing to worry about. Hard to live with either explanation but I am definitely grateful that it is brief and do acknowledge that cancer pain would be very hard to take if it were prolonged, like it is for end-stage patients. So hard.

At this point, it looks like I will see through the chemo until September and then possibly scale down to a Herceptin only chemo every three weeks. The Herceptin is primarily intended to keep the cancer under control and is not about eradication. However, that decision will be made in September.

That’s about where it’s at for now. I think the bottom line is that we’re on the right track. It just a question of being patient and seeing this though (reminder – patience is not my forte!).

I have just started Wilderness Warrior about Teddy Roosevelt. It is beautifully written and his fascination with wildlife is truly something. Roosevelt always carried around a copy of Darwin’s “Origin of Species”! His determination to protect Florida’s Brown Pelican is kind of amazing (or crazy) in light of other policy issues which were (no doubt) vying for his attention.

More soon but just wanted you to know I’m still here!

XXOO, C

This entry was posted on Monday, July 12th, 2010 at 4:07 pm and is filed under Cancer, How am I Feeling, Treatment. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.

12 Responses to “The Good, the Bad and the Ugly”

Suzanne Martin Says:

Woo hoooo, Constance!!! We need to celebrate the shrinkage… :-)
Since we live in such a litigious socieity, we all know that doctors have to protect themselves and always go overboard with their statements and predictions. Just listen to tv ads… if you have a headache and take some otc medication, you may have nose bleeds, diarrhea, constipation, nausea, hair loss, etc. etc. hahahaaaa
One of my dear friends was diagnosed with breast cancer in 1998, and was told that since a large number of lymph nodes had cancer cells, her life expectancy was 3 years. Here we are, 12 years later, and she remains cancer-free. So, don’t dwell on the negative comments. I am a great believe in the power of positive thoughts and prayers,and I am sending both your way daily.
Hugs,
Suzanne

Doreen Sterling Says:

Good news on the shrinkage. Your positive but realistic outlook is inspirational. Thinking of you.
Hugs

cathi Says:

hi Constance-I was glad to read your post-sounds as if the
-what shall I call them-cancer seems so unoriginal-if you come up with another term of reference-post it-anyway I am glad those cells are responding and if there was anyone
to counteract the negative side of cancer-they have met their match in you-you sound so grounded and we wish
you good health and continued progress-you know if you
need blood units-consider designated donors-people who
would be crossmatched just for you-if the Rh type doesn’t
match the units are donated to the blood bank-lots of
reasons you don’t want blood but just in case-that can take up to a week to arrange so….say hello to the girls and Jeremy! I am glad you are happy with your care as well-very important!!!
take care-
Cathi Campbell

Mark Dosch Says:

Hey Constie
I think of you daily even though we don’t visit every day. Whenever I see you in the yard, I want to touch base. You’re the best neighbor and friend anybody could possibly want. I too am thrilled by the shrinkage. Now if only I too could do a little shrinkage, then I’d be closer to your size!

Radiate a little silliness every day!

Martha Mensendiek Says:

Hi Constie!

I ditto the previous two comments!

And as you mention, you ARE on the right track!
I too celebrate the good news on the remarkable recovery and have lots of hope that you will be another inspiring example of defying the odds!

I too am thinking of you each day and send my prayers for healing and good energy!

With love,

Martha

Isabelle Says:

I was hoping that “no news” were “good news” (French saying: Pas de nouvelles, bonnes nouvelles!”)…I am glad this is the case.

And by the way, you are entitled to a little complaining! It’s healthy to vent!

Thinking of you :)

Dawn Roddy Says:

Good news on the shrinkage. Keep up the good attitude. Hopefully I will see you around the campus sometime.

Minh-Hai Says:

I want to echo the good news on the shrinkage! I’m glad to see you’re back to the blog. XOXO

Jennifer Downs Says:

Constie…..nice to read your comments–makes me feel like I am in your presence. Lovely time in Maine. I hope you got back ok.
Glad to see the good news posted. I know it is day by day very challenging. I send you much love and appreciation.
Jennifer

Georgine Price Says:

Hi Constie!
What great news! I wanted to let you know that I think of you often and am just so pleased to hear of your progress! I’ll be in the Washington area in early October. If you need help with some weeding – just let me know. Lots of Love and Aloha -
Georgine

Julie Froude Says:

Hey, Constie! So good to hear from you again. Glad you are back to work and able to focus on other things during the day. “Dealing with cancer” can take over your thoughts if you don’t have other outlets as well. Anything you do that allows you to be normal again (ok, the “new normal”) is healing in its own right– speaking from experience. I’m sorry to hear about the hearing loss– was that due to radiation? Hopefully you can also find many other ways to build up those red blood cells. Unfortunately, in my case, that meant I also had to start drinking prune juice in copious amounts to counteract the bad effects of iron supplements… the plus is the added iron! :) Hang in there, sweetie! We’re all pulling for you and love you lots. Julie

Phoebe MacLeish Says:

Hey Constance – your news sounds so promising. I’m glad to hear you’re back at work but we so miss you in our area – the toxic folks are so lucky to have you. If I may share something, I can relate to your hearing loss. A few years ago (ok, guess it was about 10) I noticed I was not hearing right. Went to the doc and learned I had some genetic problem that caused rapid and sudden hearing loss. I now have implants in both ears. My hearing is ok, but I still miss lots of conversation threads and sometimes respond with really dumb, totally out of line comments or answers. The comment I remember most about the whole episode and getting implants was from a former co-worker about how I no longer had any excuses for not knowing what was going on in meetings – if only it were that simple – too bad it didn’t solve the problem of zoning out when big mouths start spouting off :) Any way Keep smilin and thinkin positive!

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