Estrogen is crack & cancer is a junkie.

I guess I have put it off long enough. I will now reveal to you all what has been going on. I caved to the multiple calls and emails politely asking, "Are you okay? Haven't heard from you and I'm worried." or just those of you that are brazen enough to write, "What the fuck is up?"

I had a MRI of the right hip/pelvis/femur 2 weeks ago and the bone mets have woken up and are back in action. My CA 27-29 took a 40 point jump and my oncologist said maybe that the spike in tumor markers coupled with my pain was probably indicative of new activity. The pain in my hip has become unbearable. I can barely walk and simple things like getting in the car, getting in and out of bed and stairs send me through the roof with pain. I am already on round-the-clock sustained release pain killers and have had to take more meds than ever for breakthrough pain.

My extremely aggressive cancer it acting extremely aggressive again. I had a Breast MRI and Mammogram last week. Two new tumors in the left breast. The right one, for the time being is clear.

I got in to see the Endocrinologist about my elevated estrogen and high DHEA levels and she told me that she had never seen anything like this. She was my kind of clinician. To the point, friendly and to wrap up my appointment she said she needed to go, so she could start looking at my films. I like someone who makes me feel like she is on it. She said when and if we get to the bottom of this medical mystery (she didn't bite at my 3rd ovary theory) she will have to write a paper for submission BECAUSE IT IS SO STRANGE! Freaks & Geeks on the Discovery channel here I come! She has some ideas about what it might be:

1. Adrenal hyperplasia
2. An estrogen secreting tumor on the adrenal glands
3. Some ovarian tissue that was left after hysterectomy

I asked if the adrenal glands can be removed and apparently one can have an adrenalectomy. There is a local surgeon that does the procedure. Problem is that the adrenal glands secrete "life necessary" (her words) hormones like cortisol. So, if I had the adrenals taken out it could potentially cause a whole host of endocrine related problems and I would have to take supplemental hormones for the rest of my life. This is not an attractive option to me.

She also said that a round of chemo might be prudent. Even though the endocrinologist, my gynecologist and my oncologist don't know what it is that is elevating the estrogen and DHEA levels it is clear that the cancer is feeding off the estrogen and causing growth.

Matt and I saw Dr. K today and he said that he could see it in my face that I am in agony. He said because I don't complain about pain this must be serious. He said I can't live in pain like this. It is probably not helping to contain the cancer spread if I am constantly in pain. I am off to get the hip radiated next week. I am fine with this because it should help within 2-3 weeks and apparently the side effects are minimal.

Then he said that I should probably prepare myself for some "tame" chemo. He doesn't know what kind yet and won't until he chats with the endocrinologist but it might start in May. It feels like everyone is looking to chemo to sort of interrupt the process or just kill it. It will work, of this I am certain.

So for now I am a little cranky and a little scared and a little angry. I hate these times when I am supposed to be accepting my "new normal." My "new normal" sucks. I want my "old normal" back.

I know that you are all out there rooting for us, praying for us and just waiting for something you can do. Don't worry we will be calling on friends/family soon. I am trying to get a lot of rest and have good pain control. Matt is displaying his rock solid command of the home and work front. He is busy preparing for what the future holds for our family. We will know more after Thursday when we meet with the radiation doctor.

So for now please no calls. Emails and texts are cool. We need to talk to the girls first.

Today's Purpose

Last night I received the good news from Dr.K that the MRIs of my right hip and lumbo-sacral spine show no new progression of disease. This is great news! We had some concerns because my CA 27-29 had been going up at a semi-alarming rate (40 to 60 to 80.) Additionally, I have been having a lot of pain in my hip and low back on the right. When I say "a lot" of pain this is probably the kind of pain that most would rate a "10" out of ten. Since I just continue to trudge on through the pain (with the help of pharmaceuticals) it says quite a bit that I am mentioning, much less complaining about pain. THEORUM: CA 27-29 Increase + Pain in hip & back increase = MRI.

My October PET scan was great. The metastatic disease in my bones has been arrested. It is still there but it is not spreading so it is stable. The little effer cancer cells from Hell are pooping out because they have no estrogen to feed on (they are such crack whores.) Our hope is that the future PET scans will show that the disease is now dying off. Dr. K wanting a MRI to see if we had missed something or if there was something percolating in the hip/femoral head/sacral region. There could be something that was not picked up on PET scan. Thankfully, there was nothing.

Dr.K is "cautiously optimistic." I think he and Lou Dobbs from CNN are in a continual state of cautious optimism. Let me say here and now that I am good with cautious optimism. It is way better than flagrant pessimism.

The girls and I are all suffering with strep throat. I don't think I have ever had strep before. It is not fun. We are all on antibiotics to treat it so we are good for the public domain.

On this day I am relieved. I can sit around and perseverate on something besides cancer. What a gift. I get these little motivational emails every day from my friend Michael. I love today's words of wisdom so I will share.


Today's purpose
+++++++++++++++++++

What is your purpose for this day? What have you chosen to do
with the minutes and hours of this day, a day that is
already flowing into your life?

When you give each day a specific purpose, at the end of
each day you'll have a specific accomplishment. In addition
to having a day that you can look back upon, you'll also
have real, lasting value that you can carry forward.

Today is full of countless possibilities. Giving the day a
purpose will enable you to fulfill the exact possibilities
that align with that purpose.

This day is rich in energy. With a clear purpose, you can
harness that powerful energy and channel it into something
that will make a difference for your world.

There are dreams that you long to achieve. Today is your
opportunity to move solidly toward them.

Give today a purpose -- a rich , wonderful, meaningful
purpose. And live life at its best.

Harpooning

Well there is good news and there is and medium-good news and banal news and bad news and really bad news. Which do you want first? I will take the good news first with a side of onion rings!

I had my third PET scan on January 4th. 2008. Such a crazy test! It is actually measuring how things are doing on a cellular level. The day before you cannot eat any carbs. It is kind of a meat day. Additionally, no strenuous activity so clearly I cannot slaughter my own meat. I have to purchase it at a store.

Anyhow, then you can have nothing after 8pm. No water, no nothing. Your necessary medications are OK in the morning but with 20 ounces of water. Once you arrive at the scanning center (if your bladder hasn't burst) you get to drink two liters of barium. Yum! Yum! and not filling at all! (Go for the Banana over the Vanilla if given the choice.) Once you get the super radioactive sauce shot into your veins you have to remain perfectly still. No gum chewing and no reading. This would make your eyes or your mouth might light up on the scan.

The other weird thing is that the radioactive sauce is in the big metal box and the syringe is in a thick metal sleeve. The tech has 3 radiation exposure markers on her person but it is being mainlined by cancer girl. It is so weird. It makes me feel dirty from the inside out in a Karen Silkwood kind of way. Then you lie on the conveyor belt and you go into the tube. You must remain perfectly still (which is easier said than done.) It is not as long as a MRI but still it is long enough.

You come out, you pee (and it really is radioactive not just B vitamins) and you are on your way. Now you can't be around children or pregnant people for 10-12 hours but you are FINE it is SAFE!!! It is akin to taking direction from Mr. Burns on the Simpson's.

The good news is that every cancer tumor, cell or lesion in my body is either shrinking or slowing down (not up taking estrogen as fast.) Isn't that great? The medium good news is that there was an area that lit up on the PET which was my left armpit node. As we all remember this was the first lump I found in June. The first one is the one that you find and then you get buzzed and have your girlfriend, in my case Kimmie Kilker, feel you up in the Newcastle Golf & Country Club bathroom to give you a second opinion. The girlfriend ALWAYS precedes the physician.

The banal news is that this could be due to an infection process that couples with swollen lymph nodes. The bad news is that it could also be due to the cancer cells in that lymph node becoming Tamoxifen resistant. The really bad news is that the treatment for the bad news is a drug called Faslodex. It is "indicated for the treatment of hormone receptor positive metastatic breast cancer in post-menopausal women with disease progression following anti-estrogen therapy." You know me and the 4 other women on the planet that this applies to. (Yes, Lucinda, I read the entire drug company insert. Now and forever a geek!)

You may be asking why this is such bad news. Well here is why: The effin shot is a harpoon. It could take down a whale. It is about a 16 gauge needle and the drug is the viscosity of honey. It is a 2 minute push in the ass. It is so incredibly uncomfortable. The fabulous oncology nurses do a great job with what they have BUTT it isn't pretty.

Oh and other late breaking good news is that after 2 months of having my CA 27-29 be relatively unchanged (Oct. 75, Nov. 68, Dec. 77) it is down to 51. FIFTY ONE! That is so awesome and definitely worth a pain in the butt every month.

Counting Down

This is the way to the exit little cancer cells................

My friend, sister and mentor Kim "Kay-Kay" Moger has this little phrase she uses for our sales team. It is "know the score, show the score and the score will change." Well, let's just look at how the score has changed since July 9, 2007.

This is my CA 27-29 count. As I have explained in prebious posts the CA 27-29 counts how many cancer markers are in my blood. We want this number to go down, and down it is going.

July 17th 210
August 3rd 278
August 14th 157
September 14th 118
October 15th 75

As they say in business and on Lou Dobbs, "The numbers are trending down," and that's a good thing.

I am sorry that my posts have been so infrequent, but I am back with a month of life's greatest material.

No News is Good News

Hey! I have a terrible case of blogger's cramp. My BFF Lucinda said that it would nice to just let everyone know that I am doing well. My hysterectomy went well. Still recovering from that. Planning on having the 12 week follow-up PET scan on October 12th and treatment on October 15th.

Truly we love and appreciate all of you and I should be over my Blogger's Block shortly.

My CA 27-29 is down to 118 and I am fully menopausal. Menopause is so great!! The hot flashes are like stepping off the plane onto the tarmack in Belize! The night sweats just make me feel like I am hot tubbing and the mood swings. Well, just ask Matt how much fun those are! Additionally, my vocabulary is now at a first grade level so Anya and I can really communicate and I have forgotten how to spell.

This should all pass some day according to my surgeon or maybe not.

I am happy to announce that my brother Chris and his lovely wife Leslie had their second son on September 27th and named him Burke Davis Lowe. They are doing well.

Love Michele

It's a Numbers Game

It's a numbers game.

I am happy to say that I can start this installment off with good news. I know, good news, an anomaly.

Well are three ways by which my doctors can discern how well I am doing. First, by a PET scan which are extremely expensive at about $10K a pop. The second is by the highly subjective method, my doctors ask me how I am feeling and I tell them. The third and most objective is by measuring a cancer marker in my blood called CA 27-29.

Let’s learn about cancer markers. I will need some help from the American Cancer Society. (www.cancer.org)

What Are Tumor Markers?
Tumor markers are substances that can be found in the body (usually in the blood or urine) when cancer is present. They can be products of the cancer cells themselves or of the body in response to cancer or other conditions. Most tumor markers are proteins.
There are many different tumor markers. Some are seen only in a single type of cancer, while others can be detected in several types of cancer.
To test for the presence of a tumor marker, the doctor sends a sample of the patient's blood or urine to a lab. The marker is usually detected by combining the blood or urine with manmade antibodies designed to react with that specific protein.
For these reasons, only a handful of tumor markers are commonly used by most doctors. When a doctor does look at the level of a certain tumor marker, he or she will consider it along with the results of the patient’s history and physical exam and other lab tests or imaging tests.
Determining the Effectiveness of Cancer Treatment
Most doctors find that the most important use for tumor markers is to monitor patients being treated for cancer, especially advanced cancer. If a tumor marker is available for a specific type of cancer, it is much easier to measure it to see if the treatment is working rather than to repeat chest x-rays, computed tomography (CT) scans, bone scans, or other complicated tests (PET.) It is also less expensive.
If the marker level in the blood goes down, it is almost always a sign that the treatment is having an effect. On the other hand, if the marker level goes up, then the treatment probably should be changed. (One exception is if the cancer is very sensitive to a particular chemotherapy treatment. In this case, the chemotherapy can cause many cancer cells to rapidly die and release large amounts of the marker, which will cause the level of the marker in the blood to temporarily rise.)
Specific Tumor Markers
CA 27.29: CA 27.29 is a marker used to follow patients with breast cancer during or after treatment. This test measures the same marker as the CA 15-3 test, but in a different way. Although it is a newer test than CA 15-3, it does not appear to be any better in detecting either early or advanced disease. It may be less likely to be positive in people without cancer. The normal level is usually less than 38 to 40 U/mL, depending on the testing lab. This marker can also be elevated in other cancers and in some non-cancerous conditions and may not be elevated in some women with breast cancer.

Now that you have had your tutorial about the fascinating subject of tumor markers I will give you the good news. On July 17th my count was 210. By August 8th the count was up to 278. During this time I was in unremitting pain. I was up at all hours of the night either with pain, nausea, or trouble moving. I could only sleep off and on and was miserable. I believe that there was this part of me that a lot of this time period I was just overwhelmed with what was happening. My diagnosis, how strange my cancer was behaving, how aggressive it was and how long I had suffered with the symptoms.

For many of you that are not around me on a day-to-day basis you missed what had been going on since January 2007. Every week or two I would have another area of my body that would just flare up in pain. First it was my ribcage on the left. I could barely drive or breathe. I went immediately to the Physical Therapist and got three treatments in 3 days. It seems to resolve. The other said would flare up. I figures that since I had been guarding the left it made since the right was bugging me. Then it was my hips. First, one side and then it would resolve about 3 days later. Then my sternum or shoulder or collar bone. These are all examples of the metastatic bone cancer spreading throughout my body from January to July. What was I saying to myself? “I am 40 years old; I am a working mother of 2 and my body is falling apart.” Ask Matt how many times I complained about our mattress and how we needed a new one because I couldn’t sleep without pain. Again, I am just getting old and falling apart.

On July 26th I had my first treatment. By July 30th my pain was being managed very well but my GI symptoms were just unbearable. We were warned about this. All this distress and agony meant that the treatment was working. I must say it is super hard to get yourself wrapped around this miserable existence when your arms are wrapped around the toilet.

On August 3rd I was in to see the oncologist again because my nausea/diarrhea was out of control. At this time they drew another CA 27-29 and as you previously read it was up to 278 from 210. This is one of the aspects of cancer treatment that is counterintuitive. Just like when you are first pregnant. Sometimes if your morning sickness is really bad and you are puking every day you go into see the obstetrician and the nurse full of smiles asks you if you have been experiencing any morning sickness. “Yes,” you reply, “Every day and it is so bad and I can’t be away from the bathroom and I feel sick all the time.” Then the obstetrical nurse responds, “Good, that means the baby is sticking.” Grin, smiles, and a little wink.

So it is with cancer. The shittier you feel the better the better the treatment is working. From August 3rd to August 14th I really had a marked turn around. Since the 14th I have felt even better. So with this news I am happy to let you all know that the blood draw from August 14th was down to 157. That is more than 100 points. My oncologist is optimistic, Matt is cautiously optimistic and I am over the moon. The gross, disgusting days of feeling like crap may return. But I say to you with a grin, smile and a wink at least we know it is working.