Two Months have passed???

December was a blur. I bought Christmas Cards. I bought stamps. I got labels printed. It is all still sitting in the office.

I host my International Club in mid January. Since I was literally spending all January at Tess’s, in desperation I pleaded for help from my club members. “I’ll have it at my house. I won’t be here but Tom will!!” (Do you think that man is destined for sainthood?) I’ll write a story sometime about all the stuff I have dumped on him, surprised him with, (such as Tess), abandoned him for......

And they did. Twenty-five women showed up, noisy, boisterous, silly. Tom had their bar ready, some appetizers prepared, the house in order, and then he retired to his back room to wait out the invasion. “They sure had a good time,” was his only comment.

And the clean dishes, glasses, leftover napkins, are still on the buffet waiting for me to put them away. It is now February and in three weeks I leave for Alaska, but first there is another week at Tess’s and something going on every weekend. All of a lighter vein, thank the Lord.

Surgery was successful. Recovery has been slow with hitches such as drains for three weeks, a popped drain, infections, low blood counts, rashes. Niggling, annoying glitches that make one want to lash out with impatience and frustration. And of course, no lifting, pushing, pulling which was why I was there because a 2-year-old is endless pushing, pulling, lifting. As noted before, Team Tess goes the way of the Leader. When Tess is ailing, so is the Team. When Tess is on the mend, so is the Team.

Last week we actually had fun because we could make excursions that weren’t connected with doctor visits. Gavin was delightful and when you are rocking a soft warm cuddly toddler to sleep, all is right with the world.

We Have a Date

Cleveland Clinic called with a date.......January 2nd, 2008......with Dr. Crowe and Dr. Barnard. Dr. Crowe is the surgeon who does the second mastectomy and Dr. Barnard is the plastic surgeon who puts in the tissue expanders in and takes her through this stage until the implants are inserted. The expanders get pumped with a saline solution encouraging her skin to grow to accommodate them and when she has enough skin, she gets the official implants and then tweaking to pretty everything up. Altogether about eight months from, as Tess puts it, “no cans to fancy fake nips.”

The good news is that after this surgery she is not facing chemo, uncertainty, and fighting cancer. This time she will be facing a cancer-free life!

With the recurrence rate so high for triple-negatives, this solution gives her the most peace, the best assurance of a cancer-free future, and the ability to have another baby or two. As she says, “Cheers to a new Year!!!” Be well, have a happy life and “remember to check yourself monthly.”

Gratitude Journals

The oddest thing is you never really count your blessings until you are in trouble...just like the temptation to only take your antibiotics until you feel good rather than the full ten days it takes to truly wipe out the infection. There is even a book out now called The Science of Gratitude which I suppose, demonstrates changes in brain chemistry that happens when you have a grateful attitude and affects the way you handle things that in turn makes things turn out better. It all gets terribly complicated but also seems to me that science is continually affirming God’s laws. Give Thanks in All Things, for instance.

So, at Thanksgiving I thought our family should share a sense of gratitude for lessons learned this year and the amazing amount of blessings we have. It went down with the usual...well, our family finds the movie A Christmas Story absolutely hilarious. Life is such an absurd mix of the bizarre. What happened to It’s a Wonderful Life? We don’t live Father Knows Best...not quite The Simpson’s, thank heaven. Actually I’ve never seen them, believe it or now. My children say I would not like it ...I’m even uncomfortable with Spongepants Bob or whoever. But I can’t say we could write our story as the sweet all American family. Nevertheless...

So, what I did was to take a basket of notebooks.....mind you, I love notebooks so I could easily fill a basket with my leftovers, some new, some rejects, some with pages torn out and titles blacked out. I mean, this was not a fully thought out, Martha Stewart planned event. Not that a woman who once did not even put up a Christmas Tree (thereafter referred to as The Christmas We Had To Put the Presents on the Couch) would go to any Martha Stewart lengths. ...I took a basket of notebooks and informed the family that we should start a daily listing of things we were grateful for and share them at Christmas.

First, the jokes came about the notebooks.....old, pages torn out, rejects.....then black humor about what they would really be grateful for (and I won’t go there)....then how about if they just e-mailed Mom and she could keep the books.

Finally they left with their books and an idea of Christmas based on gratitude, the decision of a small Christmas gift exchange among us so the focus is on Christ, and underneath all the horseplay and wordplay, a grateful attitude about who we are and what we are. Happy about the way we’ve handled the year, grateful for the prayers from friends and family all around the world and knowing that their love and support will be there next year also.

Port Removal

Wednesday while we were on our cruise, November 14th, TJ had his day in court regarding the divorce and Tess was scheduled for her chemo port removal.

Neither went as hoped. Which was partly why both kids wanted to come home with their kids for a normal old fashioned Thanksgiving and was why mother had a hellava time with the Thanksgiving prayer, rambling all over the place and getting all sloppy and emotional.

TJ’s ruling will come down sometime, hopefully in this lifetime. Probably with the same offer he made at the beginning but now including another $12,000 in lawyer’s fees. Oh well.

Tess went in for an expected 30-minute simple port removal procedure and came out 2-1/2 hours later. I don’t know the details...just that the anesthesia wore off several times, she threw up, yelled, cried and finally fainted. Then she escaped and I’m sure her surgeon went home and had a good stiff drink. The surgeon did tell her that she had been doing these since the 90’s and had never encountered one that difficult.

This was a week after going to Cleveland Clinic main campus for all the presurgery workups, including MRI, blood tests, forms and finally a visit again with Dr. Crowe. Again we sent her on her own thinking this was a simple procedure. But, the MRI showed something in the right breast, so sonograms were ordered and a lot of waiting ensued. They finally concluded that it was just some fibrous tissue and there was no need for alarm or for an early surgery...that’s after Tess went through all the heart stopping panic of thinking Good Grief, is it in the other side now? When all was settled and she had her visit with Dr. Crowe, he commented, “Well, I think this is a no brainer. Let’s get that tissue out of you.” Agreed.

She saw the plastic surgeon on the 19th. This is Dr. Stephen Barnard. Our third man. Remember the first was Shiny Teeth, the second wonderful Dr. Levy and now we have Dr. Barnard. Dr. Levy does not work on main campus, so this is the man recommended to her by Dr. Crowe. Tess said he was very professional and very good. Unlike Shiny Teeth, he had photographs of his work, a lot of knowledge and answers. This is what he does every day and at one of the best hospitals in the world, so we trust she is in the best hands possible. They will send the breast tissue to the lab during the operations and if any cells are abnormal, they will test lymph nodes also.
We do not have any dates yet for all these surgeries and procedures. We do know that the whole process is about 8 months. So we are looking at 2008 as our mop-up year. The worst is now behind us and we just have the finishing up to do. Thank the Lord.

Nordie's at Noon

The kids were here for Thanksgiving. A last minute affair. The only fresh turkey left was an 18-pounder...enough for 30 people and we were five! Seven with the two toddlers, but they didn’t eat much turkey. There’s a lot of turkey in all our freezers now and Tom and I have made two turkey soups.

Tess’s friends all read “Nordie’s at Noon” at the beginning of this. I read it a few months ago. Tess pulled it off my bookshelf. “Should I read this?”

Four young women, ages 24 to 33, who were diagnosed with breast cancer met every Tuesday at Nordie’s for lunch. They wrote their story with no holds barred. Two made it and two did not. It is not an easy book to read, especially if you are living the story.

This morning she called, “Why did you let me read that book?”

“I didn’t sleep all night. Is it going to come back?”

Life’s journeys. The fears we face, the fears we are forced to face. Is it better to leave them unnamed and unacknowledged or to bring them out and stare them down? I belong to the “stare them down camp” myself but that might not be the case for everyone. I remembered I drew a series of pictures when I was at the same stage Tess is at now. “Will it come back?”

The reality is that with breast cancer, it can come back; it does come back, years and years later. You are never free of that possibility. But what about the women who have never had it in the first place? They also face the same...worse, actually...odds as we survivors, but not having been there in the first place, they don’t know in their gut that it really really could be them. It’s like being killed in an auto accident. It only happens to the other person. After you’ve been there. You’ve been in the accident, you’ve had breast cancer, and it is no longer your reality that it only happens to the “other” person. You know, in your gut you know, it might be you. That is a different fear to face down. That is a different place. And you can only get back to peace, free from anxiety and worry, when you acknowledge the fear and replace it with your ability to handle whatever comes when it comes, if it comes, who cares if it comes. Then you are are free as you never were even before.

Surgeons and Egos

Back in the early eighties, the dark ages of breast cancer research and information, I had yet another cyst and this one could not be aspirated, so I was referred to a general surgeon. I had a LOT of questions. The normal procedure then was to do the biopsy under full anesthesia, rush the sample to the lab and if suspicious, do a radical mastectomy which meant taking practically everything except the heart and lungs leaving a crater where there had been a good-sized hill.

Well, no. I wanted to make this a two step (now standard procedure) and discuss my options if the biopsy was positive. No radical mastectomy until I had a chance to review it myself. And I wanted to see pictures post-op radical mastectomy. And I wanted to be awake and have him just use a local anesthesia for the biopsy. Both ideas affronted my surgeon. At first he used the fatherly approach....”it would be better for you...” Then he got downright angry when I said I would refuse to sign the consent form for the mastectomy. So we parted ways.

I approached the American Cancer Society. Today, if you have a history of cancer in the family, or if you are facing the possibility of mastectomy, the information is overwhelming. In my day, they guarded it, what there was of it, as if it were the Fort Knox gold. The American Cancer Society REFUSED to talk to me UNTIL I had a positive diagnosis! Awareness and Preparedness???? I think not. “It’s better not to know,” they patronizingly cooed at me. “Come back if you really have cancer.”

It’s almost 30 years later and my blood still rises, remembering.

And Tess is discovering the Surgeon’s Ego is still aware and awake.

Her Dr. B. has refused to do the prophylactic mastectomy, the removal of the other breast for safety’s sake. He is also the one who really questioned her decision not to use his plastic surgeon recommendation. You know, the one with the teeth and expensive shoes. Instead she chose Dr. Levy who showed real interest in the patient. This is also, looking back, the same doctor who had a false negative on the biopsy, a false positive on lymph node involvement, said she could not have more children, left unclear margins and initially found the tumor to be estrogen positive. (Maybe it is a GOOD thing that he bowed out of her life.) Disconcertingly, he did it by not returning her phone calls, nor through his right hand contact Mary, but instead had a scheduler tell her that she might be better off going to Dr. Crowe. End of story.

Tess was shocked, disbelieving, hurt and then furious at this dismissal. “If he wants that boob so bad, I’ll wrap it up and send it to him! He can have it if he’s so attached to keeping it!”

Dr. Crowe and the geneticist at Cleveland Clinic were both supportive of Tess’s decision. Since Dr. Crowe is the head surgeon in the Cancer part, I guess this too is a GOOD thing. Also (since Dr. Levy does not work on main campus where Dr. Crowe is) the plastic surgeon (#3!) only does breast surgery. That, too, is probably a GOOD thing!

(Maybe a little GODincidences here. Keep those prayers going!)

So those dates are being scheduled......for the second mastectomy and implants on both sides. November 8th she sees Dr. Crowe again and on November 29th she meets with Plastic Surgeon #3.

OK......a lot has changed over the course of this journey. Now they CAN have children and depending upon who you talk to, the advice has been to wait anywhere from 6 months after chemo to 5 years. Tess says “I’ll just follow my gut.” And even at the Cleveland Clinic you have to be aware and prepared and proactive.

Then and Now

Alison’s email sent out 5/17/07 to all of their high school friends:

"All~
I got to see our girl Tess today and she is a spunky chiquita...God love her.

She asked me to send an update so I will do my best to inform you of everything we know at this point...

Tess was diagnosed with intraductal invasive carcinoma after finding a lump in her left breast. The breast cancer is in the milk ducts. She had a surgery to remove the "cancer making machine" as doctors call it, a week ago today. Today she went to her first of many appointments at the Cleveland Clinic to meet with the surgeon who performed the surgery to remove the mass in her left breast. It was a hard discussion and the doctor gave her the facts. Thank God she had wonderful Jamie and spectacular Mom Marlyn to give her support at her meeting. The severity of the cancer calls for a mastectomy on the left side and this news was very difficult for Tess to hear. The doctor also informed them that because the cancer is estrogen driven she can no longer have children. The estrogen from a pregnancy would likely bring the cancer back into her body again. Tess is having a REALLY hard time with the thought of never being able to carry a child again. Cancer fucking sucks...
She has a consultation with her oncologist on Thursday and an appointment with a plastic surgeon next week to discuss reconstruction (the left breast after chemo when she is cancer free). Tess will have her mastectomy in the next couple weeks and at this time they will take out her lymph nodes to do further testing. The doctor recommended bypassing the sentinel (sp) node dissection and thought it was best based on her age and the cancer type to just get the lymph nodes out to be sure. Tess feels good about this decision. We will know more about her chemo treatments after this surgery....how many sessions and how often. She is ready to fight and has her boxing gloves (Jamie got for her) on her bed as throw pillows."

And now...

That was then. After that first surgery we learned that she was “triple negative.” At the time it didn’t compute because we were making decisions about the chemo treatments and then getting through chemotherapy. We just knew that the normal adjuvant therapies would not work for her, but again, you can only absorb so much at once. From the TNBC (Triple Negative Breast Cancer) Foundation, the following explains her cancer more fully:

"A triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer."

We are learning to be skeptical of pathology reports...her tumor was NOT estrogen driven as first told to us and the pet scan showed a false positive on a lymph node. And her reconstruction strategies were based on where she thought she was going to be rather than where she was. For instance, future pregnancies were initially thought to be impossible and that may not be the case. A tram flap reconstruction is not conducive to a good pregnancy since you lose an abdominal muscle and get a really tight tummy tuck.

Triple negative is also closely associated with the genetic genes for breast cancer, known as BRCA1 and BRCA2. Tess also tested negative for both of those much to the super surprise of the Cleveland Clinic staff because she fits the profile exactly. Statistics vary depending upon whose study you are reading, but triple negatives make up about 10-11% of all breast cancers and of those 78% are BRCA1 or BRCA2, especially if they have a latino or african-american background. That leaves Tess in about a 3% category of who knows what. (Undiscovered gene?) Does that mean that a preventive mastectomy on the other side would be a good idea?

So many questions again that it is almost like starting over. She has met with CC staff regarding all these issues and next Tuesday meets with the Chief Surgeon at CC to plead her case and get his input. If you are curious about more technical stuff, Google Triple Negative Breast Cancer for more than you really wanted to know.

That’s enough for today. More next time on discoveries and Tess’s strategies.