April, 2009

Thursday, April 30th, 2009

Consultation – Dr Salloum

The consultation with Dr. Salloum was… interesting.
To Say The Least.

It has been brought to my attention that,
while the science of medicine
is an established science,
The practice of medicine
is an individual philosophy.

The Friday before the appointment, I sent Dr. Salloum a complete set of all my records – everything I had.  Including CD copies of the 2 PET/CT scans.  And brought copies of more info I acquired in the few days since I sent the original packet to him.

According to Dr Salloum, he…:

#1. …would have treated me for a staph infection no more than 2 weeks before he did more tests, biopsy, etc.  With my Family history, he would have much more proactive.
With my family history, I should have been more proactive, but I Trusted my Doctor to be knowledgeable and make appropriate suggestions / decisions regarding my treatment .  He said it was a staph infection – I Believed Him.

#2. …believes that I have Inflammatory Breast Cancer.  (reference Feb 25 2009 Breast Needle Core Biopsy Results which indicate “Infiltrating Ductal Carcinoma”, page 1, page 2, page 3, page 4, page 5)
This is stunning (like a gun) news to consider, but many of the common symptoms are certainly more closely related to what I experienced.  It just gets better and better…

#3. …is hopeful that the 4 vertebra tumors (supposedly indicated in PET/CT Scan #2) are a “false read” due to the large amount of Neulasta (the bone marrow stimulator) that is currently in my body. Dr. Salloum indicates that one Neulasta shot is good for up to 3 weeks (I had been told only 3 days); getting a shot every 2 weeks for 8 weeks would probably add up to a “large” amount.
While that would be a Great change of fortune and would certainly explain the increased back pain, I’m gonna stay realistic until I get test results that say otherwise.  Bottom line – I have Breast Cancer, That will not change.  However… one can certainly Hope for a better result for the metatastic bone cancer diagnosis!

#4. …strongly suggests that I continue to follow the traditional treatment / recovery of chemo – surgery – radiation; he recommends a smaller dose of chemo, administered every week for 12 weeks, vs a larger dose administered every other week for 8 weeks.
If I continue on the chemo path of treatment / recovery, this is definitely something I’d look into.

And That is the new information that I got to put into my pot and stir…  Here’s a copy of his “doodling notes”

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Wednesday, April 29th, 2009

Dragons

Dragons

Honor beast of mythic proportions

Majestic wings

Outstretched

Encircling

Radiating

beast of earth, beast of ice, beast of sea, beast of wind, beast of air

Beast of Fire

The purpose of cleansing

The purpose of cinder

The purpose of Dragons


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Tuesday, April 28th, 2009

Still Ill…

I’m still ill from chemo.  This has been the longest yet.  Almost 6 days.  Last Thursday til today (Tuesday).  How do people do this for months… years…?

My heart is still doing wonky things… skipping beats, extra beats, slowing down, racing.  I get surges of adrenaline, and have nothing to do with them except practice slow breathing to calm them down.

Still nauseous, still burping up noxious gas.  I’ve never been much of a Girly-girl, but this is just downright Gross.

My eyes are tearing, and I can still feel the toxicity in my tears… they burn my eyes.  The corners of my eyes are raw from the acrid liquid that my eyes are expelling.

I wish I had someone to hold me and tell me it was gonna be all right… someone I could believe.

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Monday, April 27th, 2009

More News – Dr. Salloum, Christus Spohn Cancer Center

I have an appointment with a Dr. in Corpus Christi (Texas). Dr. Emile Salloum, of Christus Spohn Cancer Center. Dr. Salloum is Medical Director, Christus Spohn Stem Cell Program. Stem Cell Program. Stem Cell… Chemo kills Stem Cells.

Dr. Salloum is also my Father’s oncologist, and he graciously agreed to look over my reports, to give me another opinion, a 3rd opinion.

I overnighted my complete records (to my Dad) last Thursday, my Dad delivered them to Dr. Salloum’s office on Friday, and Dr. Salloum called today (Monday), and wants to see me on Thursday (April 30). Mom and I will leave Houston early and return Thursday evening after the appointment.

We shall see what he reveals…

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Monday, April 27th, 2009

Good News!

Went to the Burzynski Clinic today… Good News! It Does NOT appear that the cancer has spread to my liver!!  YAY!!!

With That said, they feel pretty confident that it has Not spread to my brain.  I will still feel better with test results in-hand.  That will come in several weeks (a month+?), after the chemo has had a chance to leave my body and we see if the headaches, nausea and dizziness can be attributed to chemo or maybe more.  Hope not more.  More would not be good.

It still appears to be in my bones.  That has not changed.  But “only the bones” is less than we thought, and that is something good to hold on to.

I still have not decided if Burzynski is the path I will take… the “alternate” path, leaving further chemo treatments behind me, in the dust, a bitter memory of a failed trust.

I can only Hope.

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Sunday, April 26th, 2009

Darkened Nailbeds :-(

According to the Chemo Nurses, one of the (many) side effects of chemo that I would probably experience would be changes in my finger nails and toe nails.  That the beds of my nails would probably get discolored.

It’s happened.
Both my thumbs look like I smashed them with a hammer.

Ok, maybe not That bad… not the Whole nail bed.
Just the area by the cuticle, “only” about 1/4 of the whole nail.  So far.

But still…
It’s ugly.
this sucks… ~sigh~

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Saturday, April 25th, 2009

Hairless and Bareness

You’d think that “hair is hair”, but I’ve noticed that the hair on my body that has fallen out due to chemo, has reacted differently based on location.

I’ve never had to worry much about shaving my legs, I could go weeks, sometimes months without any major growth.  And the hair was on my calves, virtually nothing on my upper thighs.
Now I have no hair on my legs at all.
I still have hair on the knuckles of my toes, but not much.  I don’t have to shave them at this time – yes, many women shave their toe knuckles!

I’m an adult woman, and since puberty have maintained a somewhat groomed intimate area.  Basically – clean and tidy, adult with hair.
Now I am mostly bare, but not totally.  And I dislike this.  I like my hair.  I will not shave the remainder, I am holding on to whatever semblance of adult female that I have left.

My underarms have always grown fast and required shaving weekly at minimum.
Now I have Nothing – not one single hair.

I have always had a lovely thick head of hair.
and now… well, now I am bald.
But I’m not Totally bald, I am “patchy” bald… so I have to shave so I don’t look like something from Dr. Seuss.

Seems hair is particular about holding on and letting go…

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Friday, April 24th, 2009

Chemo Phase I, #4 – April 23 2009

It gets harder each time.  Harder and Harder

Longer to recover.

My body aches,my muscles, my bones, my head. The dizziness, round and round…
Harder to drag myself out of bed.
Out of bed, where I want to stay.
To sleep
Forever

It would be so easy to give up
After everything that’s happened this past week
But I can’t.
I won’t.
I will not.

The anti-nausea meds keep the vomiting at bay, but not the feeling of nauseousness… not the reaction of my body to attempt to rid itself of this evil fluid.  The natural reaction.

The damage this poisoning is doing will be with me for years…

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Thursday, April 23rd, 2009

Chemo Today

It’s 6:28am.
I should be in bed, still sleeping.

Chemo Today…
What a hard week it’s been, and now, chemo.
Again.

Since I don’t get paid if I don’t work, I scheduled my chemo treatments for Thursdays. Then I get my Neulasta shot on Friday – the Clinic is closed on weekends. So I only loose 2 days of work, 2 days of pay, 2 days of resources to keep me going.

I’m down for at least 2 days, in bed or dragging around like a limp rag, fight nausea and dizziness and headache and crazy heart reactions and general effects from being poisoned.  I hate it.  This Is So Barbaric.

This treatment is infusion #4 of Round 1 (aka Phase 1), supposedly the last infusions of the  Adriamycin and Cytoxan (aka A/C) combo.  If I decide to continue on this chemo path, in 2 more weeks I’ll move on to the “harder” infusion, the Taxol in Round 2.  I’ll need steroids for that Round… Steroids.

Oh, WHAT is being done to my body?  How did it Get To This??

My appointment today is for 10:30am, had my alarm set for 8:00am.  But the Pups woke me up barking about 6:00am… Good Pups, just doing their jobs.  It was the UPS, delivering my pre- and post-treatment meds of Emend, the anti-nausea meds.

I was supposed to get them yesterday, but the Doctor had not authorized refills for the remaining infusions, so we had to call in and get that approved.  WTH?

Yes, partly my fault, since I SHOULD have called in on last Friday, but with all this news, I just forgot..  I called them in on Tuesday, and talked with the ACT Rep, who said she would overnight them as soon as she got the info from the Dr.

So, I get them this morning.  A little after 6:00am.
Loosing precious sleep.

Once the chemo hits, I’ll be back in bed anyway…
Gaining poisoned sleep.

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Wednesday, April 22nd, 2009

One Less Stress

I have rented the same house for 15 years now – my home.

It was an opportunity I stumbled across, as my Mother says – things happen for a reason.

I’ve Always considered myself Extremely Blessed with my Landlord and Landlady.  I’ve tried to bother them as little as possible, taking care of the house as it is my home.  They are Good People.  Like many Good People, they have experienced an unfair share of life’s devastations and set-backs.  The loss of a daughter to a car accident.  Almost loosing a son to a very serious, life-threatening motorcycle accident which took long months to recover from.  Not One, but Two homes lost to South Texas floods.  She battles MS, and she is in my daily prayers.  Yet they continue to reach out and help others.

They are Truly Good People.

They are, thankfully, in a good financial situation now.  His business has grown and is successful, and she has worked for the same company for years.

When I was hit by a DUI (2002) and was laid up for several months, they were there for me.

Yesterday I received an email from my Landlady in response to my “news”…

I’m am soooo sorry to hear of this news.  You know we have always kept you in our thoughts and prayers and will continue to do so through this ordeal.

If there is anything you need from us, just let us know (maybe keeping grass cut or something).  You know that you do not have to worry about the rent.

I hope this brings you some comfort and some piece knowing this is taken care of.  As in the past we have always tried to work with you on this issue.

Spencer and I understand your situation on living pay check to pay check because we were once in those shoes ourselves.

Well, I really don’t know what else to say except keep fighting.

Regards,

Cynthia

What can I say to such generosity?

Maybe once I stop crying I’ll come up with something appropriate…

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