2009

Dear Family and Friends,

With gratitude for your continued love and support, I am happy to be able to tell you that my latest scan of September 2009 continued to show no evidence of malignancy.

Love to all,
Susan

Happy Summer, Happy Fall

Yes, I was scared.

I enjoyed my summer as much as possible, like I said I was going to do. We did not do anything extravagant, but who needs to? I was very happy to be at home and just doing normal things. Slowly getting a little more energy, although I do still have fatigue issues. It's getting better.

But as the time for the next scan approached it felt very daunting. It's so frightening that it's hard to actually even think straight. I would swear I was just acting on autopilot for some time approaching the scan and then the week after.

But! I'm so glad to report - and grateful - that the PET scan shows no sign of cancer.

My oncologist was very happy and optimistic, and I will have my next scan in six months.

And so another big thank you to my family, and friends, and everyone who has supported me through this experience. I'm very grateful.

The best news possible!

My doctor hadn't yet read the report, so she said "Well we will just sit down and read it for the first time, together."

OK this was a little scary.

Or a lot scary.

I didn't want to think or talk about it at all the entire time between having the scans done and getting the results. I didn't even make a post here about it because I didn't want everyone else to be thinking of exactly the day and waiting with anticipation like I was.

So the doctor pulls out the report and the print is tiny and I can't read it upside down anyway. And she says "Okay... oh. Oh!" with the second 'oh' in a lighter tone. Then she reads "Impression: No evidence of malignancy with interval improvement since December 2007".

At that moment I can't make eye contact with anyone in the room because I've got a lump in my throat and I'm not sure if I'll be able to hold myself together emotionally.

Of course I hoped to be told I was in remission - it's what you're striving for all along - but I was really afraid to hope too much, to not be prepared, to not brace myself for what news I was going to receive. I'm not creative enough to think of any metaphor (although half a dozen cliches spring to mind) that could come close to describing that feeling.

My oncologist, who did not support the haplo mini-transplant suggestion, said.. and I'm paraphrasing, but close to a quote.. the disease can go away, maybe for a long time.. "some people can have remissions that last a long time, years. Some people are even cured. Why not you?"

So yeah. Why not me?

I was told before by the transplant Dr's that if I went into remission that would be the best time to go for the transplant. They believe(d) the disease will come back - "not a question of if, but when" - but I'm really more inclined to go with my onc's optimism. She told me she was optimistic "and I am not by nature an optimistic person". Why not me?

I can tell you that I was already leaning on the "no" side of the fence for a transplant, even when bracing myself for the worst news. I am going to enjoy the summer. 3 months until the next scan, and I'm going to try very hard to believe that the results of that will be the same.

Let me read you another segment: There is no lymphadenopathy below the diaphragm, and there has been complete interval resolution of the previously observed left retroperitoneal lymph node.

For now - celebrate! I'm so, so happy, I've been on cloud 9 since I heard the news, alternately all smiles or tears. I'm excited and looking forward to enjoying life!

And I am very grateful, for everyone who has been supportive of me, near and far - I have been so touched in so many ways by both loved ones and strangers - it's amazing the way that people can be caring and loving with all that is going on in the world. I hope I give it back to deserve all I have received. Thank you. I love you!

Susan


This is a sign I put up in my office at work:

I'm Portless and Feeling Better

"You are free.." said Laura, who performed the procedure to remove my port-a-cath yesterday.

I'd had some doubt as to how this procedure would go, and while talking to several people over the past few weeks have mentioned that I could not remember the removal of my first port, way back in 1996.

I can now say with confidence that surely I had it removed in the hazy but blissful state of being in the O.R. with anaesthesia likely rendering me unconscious, because I can't fathom that I could have forgotten this experience.

Don't be alarmed; it's not that it was particularly bad. Believe me, a bone marrow biopsy is leagues ahead of this one on the scales of discomfort and unpleasantness - it's just that I think it's not exactly forgettable. Just like Nat King Cole said.

Anyway, I'm sure my oncology nurse would feel somewhat vindicated to hear that the port was "partially flipped" in addition to being in a somewhat awkward position, with the access part turned in towards my breastbone moreso than facing front, ready for needles. Not flipped enough to be inaccessible with the guidance of a fluoroscope, but not quite easily available when going on by touch alone. I think I may send her a card to tell her.

I had a great experience this week, on Tuesday. I went to work, which is busy (always!). After work I went to the supermarket, you know why, then I came home and decided to do something with the stuff I bought, so I made a dinner, then cleaned up the dishes. And I still had energy. Now I don't know if this seems very exciting to you or not, but I will tell you that it excited me to no end! I can't tell you when the last time was that I was able to do that much activity and still feel at the end of it like I could maybe even still do something else, but I am pretty sure it was before April 2007. It feels like - this bit of a milestone, which even a few weeks ago seemed somewhat doubtful.

I'm still cautious now - I know I need to pace myself and take care not to over commit myself - but I'm also planning to enjoy feeling better!



Well maybe not this weekend. The port removal is another matter and of course has a small impact, but by the time we get into next week that should no longer be an issue.

Somewhere in the next few weeks I should have scans done. I don't have the appointment yet, but will make it soon and then we'll see where we are.

Hey.. it's spring

Not much news on the medical front. I saw my oncologist on April 7th - no apparent problems immediately noticable. I have had a lot of fatigue and some tenderness at the site of radiation, which finally in the past couple of days now seems to be subsiding. Supposed to wait about 8 weeks since the end of radiation treatments (March 25) to scan again.

In the meantime, I have an appt with my radiation oncologist to followup on May 1, and on May 2 I am scheduled to have the port-a-cath removed.

Otherwise waiting...waiting..waiting...

(and working.. and resting.. )

Thank you for all of your support.

And especially thanks for the messages since my last post - it's been a difficult few weeks.. my energy has been low and that also affects my mood.. sometimes I have needed a quiet pick-me-up and your messages here and emails have been wonderful and helpful.

Love,
Susan

Radiation Treatments are done

Tuesday was the last treatment, so today was the first week day since mid-February that I did not need to rush over to Philadelphia.

I'm very tired and I think I have a cold beginning, some sneezing and coughing. The doctor and nurse told me to expect to still be very tired and possibly still have some GI problems for another 2-3 weeks, as the radiation is cumulative and so just because there are not new treatments doesn't mean there might not still be effects of it.

I have an appointment April 7th with my oncologist and will find out then when they will want to scan. I am assuming it will be 6 weeks or so from now. My followup with my radiation onc is May 1st. Somewhere along the line I will need to also figure out what to do about the port-a-cath, which I still would like to have removed. So maybe a surgery in the future to do that.

While I'm glad the treatments are finished without any major drama, it is a sad week for us here after the sad news of the death last Friday of our cousin Chrisy's husband, Bishop. Please include them and their children, Cairbre and Kira, in your thoughts and prayers.

love,
Susan

18 down, 7 to go

The time is flying - I feel like I only stop moving on the weeknds and then I pretty much "STOP" moving altogether!

I had to look at the calendar to figure out where I am, but it looks like 7 more treatments by my calculations. That means 2 more of the same I've had, then 5 with a smaller field which focuses only on the exact area where the masses are. I had the films done on Thursday last week for them to rearrange the fields.

I'm feeling good except just harried and tired. I was having a number of un-well feeling problems but the doctor put me on Zofran (anti nausea med) and it has worked wonders.

Thank you all for your support. Have a Happy Easter!