Update

Hello,

We’ve been on quite a roller coaster for the last couple of weeks trying to decide on the best treatment option for the reoccurrence of my cancer. From the CT scan, it appears that I have one 2 cm. tumor in a lymph node in the center of my abdomen. To make a long story short, we’ve discussed this with 2 oncologists, 2 OB/GYN oncologists and a radiologist with possible options for surgical removal of the tumor, cyber knife radiation of the tumor, and/or chemotherapy. As of today (for a variety of reasons), we have decided to simply do the chemotherapy and to postpone starting it for about 2 months. The physicians’ opinions are that waiting a couple of months won’t make any difference in the long run, that the tumor is very slow growing and that the chemo will be just as effective if we wait. The oncologist in Southern California (Thanks, John) spoke very clearly with me about trying to achieve some quality of life during the months when I feel well, which I do now.

As long as I can keep my head clear and a positive attitude, I plan to enjoy the beautiful fall weather, do a little fly-fishing, allow Paul’s foot to heal so he’ll be healthy, enjoy my two granddaughters, go stay with my parents for a couple of weeks and just live and be happy.

“We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude.”
Charles Swindoll

Love you all,
Nyshie (aka Big Giant)

Weekend update...

Thought you’d all like to see the purple dancing bear! We’re having fun now. But seriously, he’s supposed to be non-weight bearing for 3 weeks, will see the doc and have another x-ray and could continue non-weight bearing for an additional 3 weeks. Depends on how it heals.




Beth and Danny took the dog to help us out for the weekend and have fallen head over heels in love with him. This morning we formally gave them “Jack.” We thought a lot about it and decided it was a better situation for everyone involved, especially the dog.

I see my oncologist on Wednesday to discuss chemo options and Thursday will see the new ob/gyn/oncologist to see if he thinks there’s any value in trying to remove the tumor surgically, or if it's even possible. More details to follow…


“It’s not the years in your life, it’s the life in your years.”

Abraham Lincoln

from Nysh...

Paul and I just returned from a 5 day fly fishing trip out of Buffalo, Wyoming. We rode horses out from the base camp for 5 hours over very, rocky terrain and stayed in our “tent” camp for 3 days. We had wonderful fishing, mostly little brookies, incredible food and ended up bringing home a new dog. One of the wranglers had a 7 month old border collie, named Jackson, whom he had to find a new home for. Paul fell in love with him, what could I say? I think he’ll be his new fishing buddy for the next 6 months.

I had my needle biopsy Monday morning and just got the pathology results from the oncologist. It is the ovarian cancer returning and I’ll start chemo at the end of next week or the beginning of the following week. I’ll update as soon as I know for sure, meeting with the oncologist next week to discuss chemo options.

Today I'm heading to a 4 day retreat for women who have cancer. It’s held at the Shambhala Mountain Center North of Ft. Collins at Red Feather Lakes. It includes meditation, yoga, group sessions, etc. I’m really looking forward to it as a possible means to get emotionally prepared for starting the chemo again. What else can I say? This is the hand I’ve been dealt, my only choice is to play it with as much courage and grace as I can.

I love you all.
Nyshie

Update...

The long awaited appointment with my oncologist was this morning. I was very fortunate to have Paul, Maggie and Ben with me. Overall, we feel it was pretty good news, or at least better than we were imagining. My CA125 remains at 30. The PET scan did show a 2 cm tumor in an abdominal lymph node, which is larger than a previous scan. He’s 95% certain that it’s a return of the ovarian cancer, but will need to do a needle biopsy to be absolutely certain. I’ll have this done by a radiologist within the next week or so. If it’s confirmed as ovarian, then I’ll begin on the same chemo routine as before, every three weeks for six sessions and yes, I’ll lose my hair again, damnit!

The bad news is that this particular tumor has situated itself nicely between my abdominal aorta and my kidney, which makes it virtually inoperable. Way too risky to be wielding a scalpel on and around my aorta. The good news is that the cancer responded very well to the chemo before so no reason to think otherwise this time.

Long term, I’ll just continue to have it scanned probably twice a year and most likely, will need to have chemo on again off again indefinitely. Who knows, perhaps my hair will come back straight next time?

Another great Bernie Siegel quote:

“Even if what you most hope for-a complete cure-doesn’t come to pass, the hope itself can sustain you to accomplish many things in the meantime. Refusal to hope is nothing more than a decision to die.”

My heart is continually refilled with hope from all of the love and support from each and every one of you.

Love you all,
Big Giant Nysh

Brief update...

Hi,

Nysh asked me to send out a quick update. She had the catscan and the petscan (sp?) today. She will repeat the CA125 on Wednesday and meet with her oncologist on Thursday of next week. She or I will post an update after that appointment when we have more information and a better idea of what is next.

Thanks and love,
Maggie

Friday afternoon...

We just returned from the oncology visit and here is the gist of what he said. He is the eternal optimist and wouldn’t say for sure that the cancer had returned until my CA125 was around 40 or if he found tumor evidence on a CT scan or PET scan. I will have both of the scans next Friday, followed by another CA125. He feels I am definitely heading in that direction but how fast it comes back and grows is anybody’s guess. As soon as he has definite proof, I will immediately start chemo. Since the last chemo lasted more than six months, this is interpreted as a good sign, as it means the tumors responded. The next round predictably, will last about 20 percent less time (perhaps less than a year) and then the subsequent round 20 percent less etc. until I am on chemo every week. There are four or five other drugs to try if this cocktail quits working, however, they have been found to be less effective. Our moods fluctuate throughout the day but generally we are doing ok. We do appreciate all of the kind emails/calls/etc.

My sweet friend, Kate, loaned me a book by Bernie Siegel, M.D. about cancer. This passage grabbed me:

“An awareness of one’s mortality can lead you to wake up and live an authentic, meaningful life.”

So that’s my goal, to see things differently, more clearly and appreciate everything and everyone I have been blessed to have in my life.

I love you all,
Big Giant Nysh

Two-Headed Monster

I don’t really know how many heads it has, but it appears that my cancer monster is rearing it’s ugly head again. My CA125 (tumor marker) has been gradually increasing and as of yesterday, it doubled from 15 to 31. While this is still within "normal" range ,anything under 35, the docs are certain it is the cancer returning. I’ll meet with the oncologist on Friday to determine the next step: either waiting another month and rechecking it or starting back on the original chemo protocol as soon as possible. This will most likely be a long-term process necessitating chemo off and on indefinitely. I met with a social worker today so someone else (who is paid and captive) could listen to my whining, instead of Paul and all of you.

Will keep you posted as the next step is determined.

Love you all,
Nyshie