This weekend I go down to MD Anderson for CT scans, xrays and MRIs to check the healing of my spine surgery and metastatic nodes in my lungs. Hopefully those nodes have been damaged by the chemo therapy I have been through since my last visit.

The chemo has not been fun, but I have had worse. My hair is thinning so I am wearing hats. The worse part is the fatigue and my current low white cell count. I can't go out because I am both tired and subject to catching infections, colds or just not being able to tolerate my own normal bacteria.

I must avoid fresh fruit, vegetables, rare meat, plants, cut flowers and other sources of bacteria. Poor me :(

To top off this holiday isolation, my dearest doggie, DB, had to cross that rainbow bridge. She was a beautiful girl both naughty and queenly. Her breast cancer came back in her lungs after 2.5 yrs of no cancer. There was nothing we could do to make her comfortable. At 14.5 years, we had to say good bye.

I hope to post more cheerful news when I return.

Merry

Christmas and Happy Holidays to all. Love, Peggy

Some Midnight Truths

I need to clarify that this last tumor was identified by the pathologist as metastatic (mets) osteosarcoma. It is a spread of the osteosarcoma. I may have mets in my left lung, too.

That is one reason I am trying to charge toward the next level of treatment should it be chemotherapy or whatever.

I don't know what my sarcoma doctor will recommend. For some reason he wants me to heal and then deal with the next stages.

The tumor and tissue removal was complete and successful, but there is always the microscopic level of the disease.

Sarcomas travel though the blood stream.

Because this is a long battle I sometimes I feel like the "not-dead-yet" man ( from Monty Python and the Holy Grail ). The scene is during the days of the black plague. Someone is calling "throw out your dead" and bodies are coming out of windows onto a wagon. One fellow claims he is not dead, yet.

Fortunately there is much to be done and I came going to do those things as long as it makes sense to me.

Oh and I put on 5 lbs from pre-op to today. Time to walk more.

It's October

About 6:30 this morning my eyes slammed open.

I am still here, pretty calm and comfortable.

The pre-surgery, surgery and in hospital recovery was intense and saved my life.

They did not have to take as much vertebra or muscle as they feared. They did not have to end one of the four arteries to my brain, as we feared. The osteosarcoma was removed in 3 pieces. The pathology report shows clear margins on those last two side pieces. Not sure if I am being clear or now since I am still on muscle relaxers, pain meds and the happy side of major surgery.

I have a Facebook page. It's easy. I posted the status "Home" when I arrived in Austin this past Sat. It is easy and can draw my energy away from the blog. It does not chronicle my experience, share what I can with adults with osteosarcoma like the blog does.

So for today

I am back resting at home (Mom's apartment).I feel as though I look like cartoon character Ziggy ( my hair is short and spiky) and walk like Frankenstein, but I am a little loopy on drugs still.

I can turn my head, walk, smile and healing up. It is hard to not constantly prepare for battle. I found myself impatiently wanting to get the score on chemo and radiation. However, decisions on long term therapies like that will wait for November after I have a few more tests and see my sarcoma doctor.

The doctor prescribed that I wear Charley' Hawaiian shirts. Really!

I am living the best scenario.

September Song

I have a 3 cm lesion on my C2 vertebra that may be a metastasis of my earlier sarcoma. My sarcoma doctor at MD Anderson said it was curable through surgery. The spine/neuro surgeon said it would be a complex surgery. He pretty well scared me. However, I am more afraid of uncontrolled sarcoma. He said he would plan a surgery in September. I could expect a 5-7 day in hospital recovery time.

The surgeon is head of the spine department and performs neurosurgery at MDA. I will be in good hands.

The MRI showed that the small lesion was bigger than first thought. It extends mostly on the left anterior side of the bone and into the soft tissue.
Since sarcoma spreads through the blood stream they want to take it as one piece. They may have to close off one of the arteries to the brain ( there are four). They think they would come in from the right side and cut the bone and tissue as one piece. They don't replace vertebrae. they would use screws and plates to fuse the C1 to the C3 or C4. Since the C2 is like a washer between the C1 and C3 that allows side to side movement, I would have restricted movement.

I commented to them that their description seemed to eliminate day surgery :) They said that for them it would be all day.

I guess I am tough enough to do this, I just am tired of waiting.

Oh, it's a long, long while from May to December....

One hasn't got time for the waiting game

AGAIN

I had a very distinguished looking doctor in the Interventional Radiation Department doing the CT guided biopsy.
A few days later I learned he did not get enough material for the pathologist.
I am going back to have it done on the 9th. I hope it works this time. I hope my neck does not hurt more this next time. I am really tired of being stressed out waiting for the results and a treatment plan. For me it's been a month of waiting.

Hopefully by the 16th there will be a treatment plan and we will out that damn spot.

Next Step

I am going to MD Anderson next week for a needle biopsy and interventional radiology.

Something Funny On The C2 Vertebrae

The news is not so great this time. Friday I woke up with a stiff and sore neck. Nothing made it better. I can reach things on the lower shelves in the frig, tie my shoes, etc... I finally agreed to go to the ER Monday.
Note: July when the new student doctors come on and during a holiday when people do stupid and hurtful things is a bad time to go to the ER.

Xrays and a followup CT showed "something funny" on one of the processes of my C2 vertebrae. By something funny they meant a lesion.They did a full body bone scan. Good news is that only the process on the C2 was lit up.The next step was to do a biopsy to find out if the carcinoma or the sarcoma had spread.

My sarcoma doctor at MD Anderson said not to do a biopsy and that he wanted to see the scans. So I am at home with a muscle relaxer that helps waiting for the next opinion.

The C2 vertebrae allows you to turn your head. The muscles attach to the process. They say the part that holds my spinal cord is strong enough and not affected yet.

I Forgot Cancer Was Deadly

I reconnected with a friend who owns one of my pups, Ice. We had not spoken since before the cancer thing almost 2 years ago. He had left a message on our land line which was never heard or returned.

It's kind of awful to bring folks up to date. It's hard not to traumatize them. Faced with news of that much illness it is difficult for an average person to react. Since things are OK now, it is easier to just be upbeat.

Fortunately we were both interested in talking about Ice and her war on the squirrels.

Strange as it may seem, I forgot how bad the news of cancer can be. While talking with a fellow in the waiting room I let slip that the doctors (including his) were great and had saved my life.

That's when he told me that he had rectal cancer and six months to live. He was not kidding and seemed very credible. He had finished 6 weeks of radiation treatments and was there to discuss a potential chemotherapy regime. We talked a bit about how it was important to know clearly what the prognosis was from the doctor. Then he was called.

The woman next to me told me she was a 12 year survivor of stage 2 colon cancer. It is not uncommon to meet survivors of all sorts of cancer.

Guide to Surviving

I read an interview with a local woman who has been writing an award winning blog called Breast Cancer Sisterhood

http://www.breastcancersisterhood.com/

I really did not focus on breast cancer until my second mastectomy in April. It seems strange but it's true. I guess in part because the sarcoma is more likely to kill me. However, it does not mean that the breast cancer may not be deadly.

The second breast tumor was not the first one spreading. Breast cancer doesn't work like that. When it spreads, it spreads through the lymph system to lungs, brain, liver...

I was attracted to this blog when I read that she started the blog in part because a breast cancer survivor she knew had died of an infection that originated in a cut cuticle during the time her immune system was compromised by chemotherapy. I was hospitalized a couple of times with infections while I was having chemo. No one told me not to floss or otherwise risk cutting myself. They did advise me to avoid fresh fruits, vegetables, flowers and plants due to potential bacteria.

So far I have found some things in her blog "guide to surviving breast cancer." Her blog on beans is detailed and helpful. Note to self - eat beans twice a week. Her bra fitting and shoe recommendation are for a budget not devastated by medical costs.

I don't want to be a little old lady

I just went to the grocery store for some eggs and bacon. I ended up almost passing out, getting my soul saved, groceries bought for me and my husband rescued me and drove me home. It's enough to make one want to drink.

In a sister blog called Living With A Sarcoma a young woman wrote 10 commandments. I am having trouble with No. 4:

4 - Accept your limitations and adapt to your new life. I learned to say no to many people. I accepted the fact that I could no longer work full time. I learned not to plan more than one thing a day. I learned that I can no longer multitask. I learned to schedule things for the hours I had more energy. I learned to accept that my energy level no longer went hand in hand with my enthusiasm.

I feel strong inside.
I can visualize myself being active down to the tiniest detail.
But I look like a gray haired, flat chested woman bobbing along with a cane.I look weak so I try to remember to keep my head up and smile a lot.
And then I can't make it through a little shopping trip.
While God was telling my rescuer/friend to pray for me, I was asking God why I was now an object of pity too weak to run away from my helpers.
Trying to talk my rescuer/friend out of saving me and buying my groceries probably helped my blood pressure to normalize:) I tried to be graceful about it. She told Charley that God wanted her to buy my groceries.

To help myself not fall into fear of going out, I called a nearby friend to help me get the car from the parking lot at HEB. We went out for Elevation burgers and got the car after the sunset and things started to cool.

The difference between the inside me and the outside me is what is bugging me.

Hopefully as I recover from fatigue I can bring the two closer together. Peggy

All Clear

Blood tests, x-rays and CT scans find no evidence of cancer. I am good for another 3 months.
The screw loose in my leg has finished its job. Now if it will stay where and how it is, no surgery for removal is needed.

My fatigue is normal. Apparently having had major surgery last month under general anesthetic means that my fatigue is normal. I should feel normal by mid July.

Screening

I am going for consultations and screening at University of Texas M. D. Anderson Cancer Center

http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/sarcoma/index.html

I have a screw loose in my leg - perhaps pushed out by healing bone? and they will scan my chest for signs of spreading cancer.

I expect good results but it is always tense waiting for the results.

Is it OK to Kill Your Kid?

7 Summits (http://en.wikipedia.org/wiki/Seven_Summits ) Not a bucket list but a climbing goal for the young and strong.




Thirteen-year-old Jordan Romero is attempting to be the youngest person ever to climb the summit of Mount Everest. Robert Siegel talks to Jordan about his journey.

Jordan has had a dream since he was 9 years old of climbing Everest. His father started him on a path to make that happen through training and climbing. Now he, his father and his father's girl friend ate going to climb Everest.




Earlier I blogged about cancer and reading Into Thin Air: A Personal Account of the Mt. Everest Disaster by Jon Krakauer
This was at a time that I was recovering from chemo. I felt so fatigued and exercise made me feel oxygen deprived. I could relate to the oxygen deprived thinking and feeling as I read Jon Krakauer's book version of the original article that appeared in Outside Magazine.

The thought of climbing with or sending a 13 year old up Everest strikes me as too much to expect and dangerous. Dangerous for the kid and dangerous for the team.



http://en.wikipedia.org/wiki/Into_Thin_Air )



Into Teen Air




http://outside.away.com/outside/culture/201004/jordan-romero-teenager-extreme-adventure-everest-1.html

"All this kid stuff is raising eyebrows in the adventure community—and sometimes the legal community as well. Polling a number of well-known Everest climbers and guides, I couldn't find one who thought that leading a 13-year-old up the world's highest mountain was a particularly good idea. Though a climber that young might possess the necessary stamina, most had serious reservations about a teen's emotional strength, psychological awareness, and plain old know-how. "I do not see how young people under the age of 18 can gain enough experience about mountaineering or themselves to undertake such a project safely," said Russell Brice, one of Everest's most successful guides. ...Aside from Jordan's age, the most controversial aspect of Team Romero's Everest attempt is this: They'll climb without a guide. ... The combination of record setting and high altitude could make for a similarly tragic mix. Age records have a built-in deadline: Either you grab the ring by a certain age or you don't. That's precisely the wrong attitude to take into the Death Zone."

There it is - the Death Zone. If physical preparedness is not enough to survive Everest without mental maturity to evaluate and judge situations under duress then can a teenage brain ever be ready without a large portion of luck and guidance?

"Few studies have been done on kids at altitude, but what science can tell us is this: The teenage brain works differently. In the past decade, MRI technology has shown that the adolescent brain is only about 80 percent developed. The areas that control spatial, sensory, auditory, and language functions are mature, but the frontal lobe, which handles reasoning, planning, and judgment, isn't fully grown until a person's mid-twenties. ... Their parents will think, They've done this and that—they're ready for the much bigger challenge. But the kid's brain is still developing.
The other issue is the effects of altitude on those maturing brains. "Thirteen-year-olds on Everest are guinea pigs," says R. Douglas Fields, chief of nervous-system development at the National Institutes of Health. "The combination of factors experienced in mountaineering hypoxia—dehydration, exhaustion, cold, lack of sleep, and all the rest—make it difficult to say how a child's brain would be affected.""

http://outside.away.com/outside/destinations/199609/199609_into_thin_air_1.html

Jon describes his condition at Base Camp - remember this is a grown man who has been in excellent physical condition his whole life:

"Despite the many trappings of civilization at Base Camp, there was no forgetting that we were more than three miles above sea level. Walking to the mess tent at mealtime left me wheezing to catch my breath. If I sat up too quickly, my head reeled and vertigo set in. I developed a dry, hacking cough that would steadily worsen over the next six weeks. Cuts and scrapes refused to heal. I was rarely hungry, a sign that my oxygen-deprived stomach had shut down and my body had begun to consume itself for sustenance. My arms and legs gradually began to wither to toothpicks, and by expedition's end I would weigh 25 pounds less than when I left Seattle. "

He was not even at the Death Zone, above 25,000 feet. The summit is 29,028 ft above sea level. In the death zone you are too high up to count on rescue. Your would be rescuers are barely surviving, too. Plenty of people have reached the summit only to be left for dead on the way down.

"Climbing mountains will never be a safe, predictable, rule-bound enterprise. It is an activity that idealizes risk-taking; its most celebrated figures have always been those who stuck their necks out the farthest and managed to get away with it. Climbers, as a species, are simply not distinguished by an excess of common sense. And that holds especially true for Everest climbers: When presented with a chance to reach the planet's highest summit, people are surprisingly quick to abandon prudence altogether."

People on their way up don't easily give up the summit in excahnge for saving a life. Do you want to rationalize your kid past someone dieing just to set a record? Do you want your kid left for dead? Do you want to kill your kid? Men and women have died on this mountain. Kids will now get that chance, too, before their lives have started.


Nova - Everest Death Zone - scientific look at high altitude sickness

http://video.google.com/videoplay?docid=1788082149157525822#

friends in cancer

Dana Jennings has been writing an interesting blog for the NY Times. You can find it here
http://well.blogs.nytimes.com/2010/05/11/the-friendship-of-cancer/?hp

Dana sez:
In telling our cancer stories, by refusing to be silent, by declining to hide behind stoicism, we take ownership of them, maybe even have a chance to understand them. They’re our stories, and we need to insist on that fact. We shouldn’t cede them to grieving family members, mystified friends or hard-pressed doctors and nurses.

I do it to help understand what is happening and to remember since chemo has placed blanks in my memory.

Keep Smiling

I am angry at death right now for taking people away.

Today I was remembering my Dad's memorial service. There were people there who were his students and colleagues. They had not been there during his 11 years of decline and dementia. Of course we missed their support and understood the pain of loosing this great creative leader, my Dad.

Because they were not there for the disease their stories were of my Dad being a father and mentor to them. They restored to us the person we lost to the disease. It was a great gift I will always treasure.

The Road to Hell

Today I am thinking about the death of a young man some 15 years ago. He was 34 going on 35 at the time of his death.

Whether you count addiction stages as three, four or five, they all lead to death if intervention is not successful. Some people die before they get to end stages.

No matter how brilliant or talented the addict is, the disease progresses through it's stages binding the person. They can rage at rules and judgements placed on them, but when sobriety feels abnormal addiction rules and binds.

As the disease progresses, some people turn to using cocaine to prolong the amount of time they can walk and drink. It helps them cover and lie about how drinking is binding their life.

Worse yet, combining alcohol and powder cocaine can form cocaethylene in the liver, a metabolite that can enhance pleasure but significantly increase the risk of heart attack or sudden death.

Death means that there will be no recovery. It's all over. The promise, the brillance, the talent, the love is all gone.

Notes:

A 2003 study by scientists at the University of California's Drug Dependence Research Centre noted: "The combined use of alcohol and cocaine can produce a sense of increased and prolonged euphoria, compared with the use of either substance on its own. "This claim is disputed by some scientific studies. But what seems irrefutable is that the two drugs can "stretch the good times", as one regular cocaine and alcohol binger told the Observer. "I can drink for ever on coke," said Dave, a 28-year-old electrician from Manchester. "Without it, things can go downhill very fast."
His comments are backed up by independent research. The respected magazine Druglink reported that a 2006 analysis of 102 alcohol and cocaine users, carried out by the UK National Addiction Centre, found strong links between snorting cocaine and long, heavy drinking sessions. Almost half of regular powder cocaine users questioned for the analysis said that their last heavy drinking episode had lasted more than 12 hours.

Spring

I must be healed from the mastectomy. Dash, all 70 lbs of him, jumped into my lap three times this morning. What a sweetheart!

Quaking

With 10 people killed and intense damage in Yazoo City area of Mississippi, it was unfortunate timing to claim my interest in tornadoes.

I have watched tornadoes and water spouts (from a boat) for years. Living in coastal and central Texas, you do meet up with them.

As I write this blog there is a tracker who is live streaming video north of Austin (my home) looking at the edge of general thunder storms.

I don't take the tornadoes lightly, just quake in the face of the power of nature.

Yazoo City, gateway to the delta, is where I first saw loess bluffs and acres of kudzu. I am sorry for their loss of life and damages. I hope that storm science and building standards will protect more people from these types of losses.

Real Time

I have come to it late, but I am a fan of storm trackers. Specifically, since it was suggested to me by a friend in Kansas, I have been watching live videos from storm chasers on http://www.tornadovideos.net/live

It's like a guilty pleasure. When the storms break out in tornado alley, I can check in to see who is broadcasting.

I haven't seen a tornado yet. Mostly just miles of clouds, rain drops and highway. It is just about as interesting as actually driving through Kansas.

I just like the idea somehow.

Young Lives

Today I heard about Alicia Parlette's death.
Five years ago at age 23 she learned she had a rare type of sarcoma. That was 2005. She kept a blog of her experiences for about 2 years. She was a writer and was employed by the San Francisco Chronicle as a copy editor when she was diagnosed. Her blog is at http://www.sfgate.com/alicia.

She had a deadly and very rare type of sarcoma, however,like most sarcoma patients she was young. Looking through her blog and the photos taken by the professional photographer assigned to her, you see her acting like a young single woman at the beginning of life. I also saw her with many of the machines I know well, in examination rooms, with concerned family and at a second opinion visit to MD Anderson.

At her age I was a young mother, Sanford graduate student's wife and struggling into adulthood.

I did not have to learn the lessons serious illness taught her until I had entered the sunset period of my life. Hopefully as extended a sunset as modern life expectancy promises. Anyway, I am not starting a new career or raising kids.

I hope we can find cures for sarcomas and save hopeful and promising lives like Alicia's.

I Hit The Wall

In May I have an appointment with my orthopedic oncologist at MD Anderson. The xrays of my leg showed a loose screw out of place. I am not sure where it is and I don't feel anything rattling around in my leg. Hopefully I wont have to have a procedure because I am tired of them.
I have a blood panel, xrays & CT scan and see my sarcoma doctor, Dr. Benjamin.

I have gone out once this week. Today I went to the grocery store to purchase stuff for mom and some food. It took about 40 minutes. Mom's aide helped me carry things inside and put away Mom's supplies. I put a few things in the frig and then I felt as though I had hit the wall. You know the wall that runners hit when their body says there is no more free energy.

Somewhat in a sweat and feeling edgy, I grabbed a cold water bottle and lay down. I fell asleep for over an hour.

I have been wondering if my lack of energy was in my head or physical.

Not knowing if and how I will restart chemo makes imagining the future hard and now this leg thing.

Oh well, I will try to get out again and see how that goes.

Back In It

The humorist/social commentator in the local newspaper ran a column today about being cancer free and feeling his energy return.
A number of the cancer blogs I follow have grappled with the problem of life after cancer.
The battle against cancer is so intense and consuming that it tends to push other interests to the sidelines. A lot of life after cancer is refocusing your life.

Well the new cancer has saved me from that struggle. Of course I still need to strengthen myself and seek to increase the boundaries of my universe. To be as good a friend as the friendship I receive. To try to organize my thoughts and memories so disrupted by cancer and the intensive chemo I received.

The National Cancer Institute has a booklet on this:

http://www.cancer.gov/cancertopics/life-after-treatment

Another issue is that I used to be more physically active and fit. Now I walk with a noticeable limp because my left leg muscles are not strong enough to support a normal gait. I bob and wave a bit when I walk. From my perspective " I get to walk" from the outside, I appear handicapped.

Hope Over Aguirre

I like to read Roger Ebert's blog at the Chicago Sun Times http://blogs.suntimes.com/ebert/

This week he writes about a film lover's dream, getting to discuss frame by frame the making of the 1977 film "Aguirre The Wrath of God" with writer director Werner Herzog.

If you have not seen it, you should. If you are depressed, be sure you are on your meds before seeing it.

Back in 1977 my husband Charley and I took off early from work to see this film. It was incredibly beautiful, historically accurate and overwhelming.

Klaus Kinski's character's violence, greed and madness creates a bleak hell on earth in the middle of the lush jungle and delicate Peruvian flute music.

It drained life and hope from us. We went home and stared at the floor.

I have not felt that depressed or devoid of hope at anytime during my cancer illness.

Loneliness and fatigue have been difficult. The support of friends and family have lifted me during those times when I have felt a lone. While lying still in an MRI machine, I can recall emails, cards and hugs. My spirits are lifted. Usually Charley is waiting to help me. He has been with me every step of the way.

I guess I am brave, but there seems to be no choice but to go forward and face whatever is next. There is a promise of good health and freedom. Or, this may be as good as it gets. I would love to have more energy. For now I will make the best of it.

The truth is rarely pure and never simple

It seems irritatingly careless of me to stop my recovery arc by getting cancer again.

It's kind of like getting the "Go to Jail" card in monopoly. You are out of it and fall off the track.

As Lady Bracknell said in the Oscar Wilde's play to Jack Worthing:

"To lose one parent, Mr. Worthing, may be regarded as a misfortune; to lose both looks like carelessness."

I feel as though I should apologize for carelessly getting breast cancer again and having to loose another breast.

Logically I know that each breast has it's own chance of cancer, this is early and I have nothing to apologize for and still I feel this way.

So I will wag my finger at myself and declare:

"Nor do I in any way approve of the modern sympathy with invalids. I consider it morbid. Illness of any kind is hardly a thing to be encouraged in others. Health is the primary duty of life."

The Importance of Being Earnest, Lady Bracknell, Act 1.

Another One

The bad news is the good news.
I had a couple of needle biopsies done on my left breast. One showed carcinoma. There is no tumor just calsifications that typically form after fibrocystic changes ( which I have had since I was 15) and sometimes cancer cell changes. So it is very early.
They recommended a mastectomy partly due to my history, my DNA profile, current good health and uncertain future. They hate doing major surgery when you are in the middle of chemo or radiation.
I am tentatively scheduled for the 12th at UTMB Brackenridge.

They expect to follow up the surgery with chemo. It will be outpatient and for 4-5 hours - at a time.
That's all I know.
Enjoy your Easter!

new cancer

While strolling through the cereal aisle at the HEB my radiologist called with the results of a needle biopsy I had on the remaining breast. One of the cores had cancer cells.
So I will be conferring with the surgeon and getting a copy of the biopsy sometime soon.

Its not so bad since it is early and likely very confined.
Peggy

I was at a crowded New Years Eve party and ran into an neighbor, Magical Michael. We both expressed surprise at seeing each other so far afield from the neighborhood. He told me he was on the hostess's pétanque team. And then he looked at me as though I understood. I tried to cover my confusion and smiled. I told him the hostess and I were on the same animal activitist group lobbying for No Kill.

I thought that maybe I should know the word "pétanque" and chemo had just erased it. This happens more than I would like to admit. Frequently the word definition or whatever will come to me later. this one never did. Fortunately there was an article in the local paper recently that cleared up the mystery

http://www.austin360.com/recreation/follow-the-bouncing-boules-408670.html

Pétanque is a popular French game similar to bocce ball that's finding a growing following in Austin. ...

The game originated in early 1900s in southern France and is now played by about 17 million people there — and at least 40 or 50 in Austin. It's intense. Players bend at the waist as they make their throws, concentrating intently and contorting as they unfold.
"We have one boule left. This is terrible," says Sasha Evans, 53, vice president of the club, when it's her team's turn.

Sasha was our hostess. Mystery solved.