Thursday, September 17, 2009

Finally.....

...the news we've been waiting for!!!! The results of the CT scan are in...no signs of lymphadenopathy, for us non-medical individuals, that means no disease of the lymph nodes!!!! I remember reading the report of my very first neck CT scan looking at the first lump I found in January. I saw "extensive lymphadenopathy" and quickly googled it...when I saw it refer to lymphomas, I brushed it off. I didn't think there was any possibility that I had cancer. I still had hope that there was an easy explanation...one that didn't involve cancer treatment.

However, this time around, when I read the words "possible lymphadenopathy" on the PET scan report, there was NO way I could brush it off and stay grounded in the fact that it said "possible". I knew too much. The last thing anyone just finishing cancer treatment wants to hear is that there's possibly more cancer. It felt as though my heart fell to the ground and my stomach turned inside out. I was beyond devestated.

I looked into the back seat and saw my sweet, sweet little boy. More than anything, I didn't want him to have to go through any of this again. I am amazed at the strength and resiliency he has, but the last nine months have taken it's toll on him. It has been so great to see the sparkle in his eyes come back! He has also started breastfeeding again....that was his sign of mommy getting better. In fact, when I came home and told him that I was done with chemo, he reached out both of his hands, touched my breasts, smiled ear-to-ear, and said, "now I can have my boobies again!" I didn't know how I was going to tell him that we had to wean again. (For those of you wondering, I don't really have any milk left after not bfing for 6 months, but he doesn't care...he tells me they're a "little bit dry" and goes back to nursing.)

Most of all, I was really afraid of dying, and ultimately leaving Marek. Being someone that lost one of her parents as a child, this broke my heart into a million pieces. I didn't want Marek to grow up without his mommy. I realized there was a certain level of security in Hodgkin's (thanks to modern medicine, not many people actually die from the disease)...unfortunately, that doesn't exist in cancers of the pelvic region. I know that may seem like an extreme place to go but, as a mother, every cell in my body is programed to protect my baby (or preschooler!).

Needless to say, it was a really long weekend. We were really sad!!! Thank you so much for all of your support...your prayers, healing vibes, generosity, and sincere concern have carried us through these six hellish days. We really appreciate everyone holding the space for us. In the last nine months, I have felt a grace that I didn't know existed. I have always been a big believer in the energetic nature of the universe....to feel the power of prayer and intention put forth by so many people is nothing short of magical. It has allowed my heart to grow in ways I'm not sure would have happened otherwise. I am a better person for it.

So...what's next? Well, the masses in my pelvis are fairly large, so I will still be transfered to the gyn-oncologist. I learned from someone yesterday that he is one of the best gyn-surgeons in the Bay Area. I was really stoked to hear that because one of the masses has stuck itself to the fundus of my uterus and another one is attached to my ovary. Dr. Wu threw around the word hysterectomy a few times on Monday when talking about the possibilities of what was to come. I would be absolutely devestated to have to go through that but, unlike the possibility of cancer, I'm willing to cross that bridge when we get to it.

I have my appointment on Monday afternoon, so we'll let you know what happens. Until then, I'm going to a prenatal appointment for a couple I'm acting as back-up doula for this afternoon, going to see live music with some girlfriends Friday night, and going to a "princess party" on Saturday for one of our favorite 3 year olds....I will be celebrating LIFE!

With the utmost gratitude and love......
Sarah, Dan, and Marek

Wednesday, September 16, 2009

Just Waiting....

Hi Everyone!

This is Sarah writing...thank you so much for all of your support!!! It means so much to us. I know that we couldn't have gotten through this without it.

We still don't know a lot about what is going on. I left Dr. Wu's office feeling a little bit better than I did over the weekend (it was a LONG weekend!) He thought that the odds of me having ovarian or uterine cancer was very slim and that he doesn't suspect a recurrence of lymphoma. That was the news I was hoping for...it has allowed me to sleep better at night. It has left us all wondering what the heck is going on...even Dr. Wu!

I'm drinking what feels like to be gallons of barium right now...yuck!...in preparation for a pelvic CT scan this morning. On Monday, I'll be meeting my new gyn-oncologist. We'll let you know what comes of that consult sometime early next week.

This has been an eerie place to be in again, and has taken a few days to get used to. I'm hoping and praying for the best! As always, thank you so much for your sincere concern!!

Lots of love and appreciation!
Sarah, Dan, and Marek

Saturday, September 12, 2009

Aftermath

Hi Everybody,

this is perhaps the hardest post I've faced since this journey began. I hesitate to call it a journey, because I'd rather not sully a word so full of possibility with the sadness and strife that cancer carries, but like so much of our lives recently I feel this is out of my control. It is a journey, better or worse. I'm going to begin with our lives as they were 24 hours ago.

Treatment ended on August 21st with Sarah's final radiation therapy session. It was a huge moment. Since January we have been living in the haze of this disease, always looking ahead to the next obstacle, or the next benchmark. Radiation was the final piece of the puzzle, or so we thought. One thing we hadn't really discussed, probably for lack of energy, was the recovery. We had a moment of exhilaration followed by a deep sadness. Treating the cancer is only a portion of the whole. Chemo and radiation take an unbelievable toll on the body. Sarah's oncologist admitted that the next step is where Western Medicine really fails the patient. All of a sudden you are on your own. He explained that it will take the better part of year for her body to rebuild and recover from the harsh effects of the treatment.

I've often spoken here about the distortion of time that we've experienced over the last 8 months. We had been living in slow motion, away from the rest of the world. As soon as treatment ended I could hear that clock start to tick again, but now everything is different. We suffered a fairly severe financial blow from the cumulative expenses of the cancer. Medical bills are only a portion. Sarah's lost wages, added child care, and a myriad of other expenses have been a constant drain. Without the generosity shown to us by our friends and family we would have been without hope, so a big thank you to everyone who has contributed their time, effort or money. We feel truly blessed knowing that so many people out there care so deeply.

Since January we've been in a battle over temporary disability benefits. Sarah has been denied twice, on the grounds that she should be able to work after 11 months, instead of the 12 required. All doctors involved strongly disagree, but it's no the doctors who get to make the decision. Even after we found out that Sarah would have to have another surgery to remove the teratoma in her pelvic region, and even with the lung damage caused by the bleomycin during chemo, our appeal was denied. Apparently 70% of applicants are denied up front, but that's no consolation given our current situation. After two denials we are now required to go before a judge and plead our case. As of Friday morning our case was strong, but now I believe it to be undeniable.

Friday was the final PET scan in the treatment cycle. Sarah drove to Stanford by herself for this one while Marek and I stayed home and waited. The PET scan requires the injection of a radioactive isotope, which leaves Sarah radiating at a dangerous level for hours after. This means she has to stay away from children and pregnant or nursing mothers for about six hours. Scary, I know. This was basically the test that would show us that all of the Hodgkin's was gone, that no active cancer cells remained. It was the final step in the treatment, a formality basically, and a reason to celebrate.

Once Sarah got home we all piled into the car and headed into Santa Cruz to meet our friends for dinner. We were expecting a call from the oncologist with a brief interpretation of the test before we saw him on Monday. This call changed everything. From the first words Dr. Wu sounded concerned, which is never a good sign. The Hodgkin's is totally gone, which is great, but there's something else. The teratoma that had shown no activity at the time of the previous scan was now showing activity. In addition to that there's another mass showing PET positive, which can mean active cancer cells. We see Dr. Wu on Monday, and from there we'll be sent to the Palo Alto Medical Foundation to meet with a new oncology team.

The Hodgkin's is gone, but by some cruel stroke of circumstance there may be a new cancer to deal with. We were standing at the finish line, and when we crossed there was no rest or resolution. I'd like to say that we're staying positive, but it took everything we had to beat the first cancer. This just feels like too much. As of now we are very short on details, but I'll be back here as soon as we have something to report. I would have liked nothing more than to deliver a happy ending to this story, but like through most of this experience we are waiting and hoping for the best.

Until then, thank you for all of the love and support,

Dan, Sarah, and Marek