Monday 26 September 2011

taxotere and herceptin

It turns out that although i have only a twenty five percent chance of being alive in five years if I don't do the treatment, the odds of being alive in five years only improve to fifty fifty with treatment.

I had a five hour infusion friday. The nurses, through incompetence and other such bullshit, added another two hours onto the front end. They forgot to phone the pharmacy to ask them to mix my drugs.

Note to never say to someone with breast cancer (as my nurse did): "oh things are so progressive now with chemo's developments that it is basically like aids now, a chronic condition." Please don't say this. You sound so stupid I am embarrassed for you. And you would never dare say it in front of the family who has lost someone to this disease as someone getting all the treatment possible dies from this everyday. loses the battle. so don't say it. check yourself and your arrogance.
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Suzanne and Mike were awesome Friday. Mike drove me there and Suzanne nursed me there. She came to cook for me and give me a drink last nite when i was so thirsty and weak I was shaking.

Missed the Carp Fair.

Bones hurt. Very weak.

Will to live a tad on the low side.

Tuesday 20 September 2011

Facing Commitment: taxotere and herceptin begin on thursday

My friend, Debbie, in Texas, sent me a display of flowers that are still blooming, when I was down under, sick and low for two weeks. They are so pretty. Thank you, Debbie. Suzanne in NYC rescued the day by closing my mastectomy wound. I will explain below. Thank you so much, Suzanne.

I am committed to three infusions of taxotere, three weeks apart, which begin two days from now, and to, simultaneously, begin a year of herceptin infusions every three weeks. I have also committed to the port-a-catheter, possibly that morning.

This last round of chemo marked the end of FEC chemo for me (the nausea/hair loss/fatigue chemo) and I slept and felt nauseated for two whole weeks after it. Was just too sick (despite hundreds of dollars of the good anti-nausea drug, paid by Joanna and Ellen), too tired to get out of bed much, and too mentally foggy to cope with much responsibility at all. My first two rounds meant a week in bed after each.

The one week where I felt normal, despite fatigue, this past one, was amazing. I was at Bruce Pit walking dogs everyday and had a ball in the autumn sunshine.

I had a great time with my friends. Saturday night, when Dave took the boys, Bucky and Eiger, on a canoe camping trip, and Bobbi and I got to be girly girls, with treats and cuddles, and when Dawn, Christine, and Courtenay came over for a fun party, I was so happy I forgot all about the chemo and the cancer. Kept my blond wig on all evening and we were four blondes having fun. Dawn turns out to have almost been my sister's niece. It turns out her uncle and my sister were engaged for a few years, decades ago. I recall the Norris family from when they used to live around the corner from us, growing up. I have loved Dawn and known her for a year and a half and never figured that out before. Saturday night Dawn read the angel cards for us three, and I could not get over how accurate they were.

Dave has been much better, too. Much less negativity in the air.

Another great thing about the week of good health was that I started to use the HER2 website and became online friends with a couple of super Her2 friends, Denise and Nancy. I started upping my prayer program with a morning reflection/prayer that comes from an American website too.

Monday morning I researched what I was in for during the next nine weeks when taxotere is my chemo treatment. What I learned scared the devil out of me. I will reprint it here for you. First is taxotere side effects and how Denise managed to mitigate some of the effects, and secondly I will reprint the herceptin effects. I will put these at the bottom of the blog.

I have never committed to anything in my life before that I could not back out of. You all know the attempts to escape finishing chemo. I explained those attempts a coupla blogs ago and how the resident talked me out of it. What you don't know is that not long after I was strong and I recommitted to chemo while my health was good for that one week, the past week.

You know well how hard I tried to avoid the port in my chest. The veins in my left arm appear bruised under the surface and the left arm smarted to touch the week after chemo. Trouble is, is that it hasn't healed. Still smarts to touch and is still bruised. So. I saw Paul, my oncologist, Friday, and we both decided I had to do it. Those veins do not appear strong enough to handle more chemo. My mastectomy wound, however, thanks to Suzanne in New York City, has been receiving powdered fungal medicine, which she kindly Fedexed to me, has finally closed. Home visiting nurse, Chantal, thanks you, Suzanne, as do I. How wonderful is Suzanne!!! There is a really ugly scar in the shape of maroon big lips on either side of where the incision opened, however.

I feel like I am in a surreal situation. Commitment phobia was always my weakness as a younger woman. Never wanted to be "trapped" like my mom was for her whole life. Always had a back up plan. I have a couple of reflections on this. First, I ended up trapped anyway, in terms of my marriage and happiness, despite two adult decades of being a commitmentphobe. Why? Because we always replicate our parents' decisions? Is there free will? Are our decisions always in reaction to those of our parents or mirroring them? I really have to say that for me the jury is still out on nature/nurture and free will when it comes to mating and decisions like that. I have no assurance that pretty well anything we do is from free will. How many murderers, thieves, philanderers, for example, have you met or heard of who didn't have a father just like them? Do we know how much is environment and how much is in the genes? I have no idea.

My surreal situation is that I cannot just back out of chemo. I have to go through it. I have always been a quitter when things got too rough. I am not really made of the stuff that perseveres. Mind you, there is evidence to the complete contrary. Dave can attest that I have spent many an overnite finishing a scene in my script, or debugging our computer, or getting a contrary software program such as a marks program for high school teachers, to make sense. I just don't give up in those situations. I always persevere into the wee hours, loading thirty thousand songs into an ipod in the strange and specific way I enjoy...tailored playlists.

So in conclusion, yes, I am capable of perseverance. I have a Master's thesis to prove it. But as I mentioned a couple of blogs ago, I am completely against being kitted out with a port in my upper chest like a pre-death hospital patient.

Freedom and Responsibility. Everytime I have found myself in a canoe in a provincial park in the wild I start reflecting on it. I sing while paddling, and get to go over all the songs, mostly Irish ballads, that I know all the complicated lyrics of. And reflecting on that while doing it, and how it rarely happens, the singing, in the real world, I always end up reflecting on Freedom versus Responsibility. We have to conform, behave, do the right thing, and we have to feel non-depressed while doing it. We have to feel there is a point to the nasty tasks.

Responsibility gives you the thing all people long for, a fellow I knew in my twenties, once said, "people want to be trusted, and to have some authority to carry out their designs and ideas." This is the golden side of responsibility. Freedom gives you the will to live. Sabotaging yourself can consist of erring too far either way. "You cannot kill the robber, Fancy, (imagination/freedom) lurking within", Dickens wrote, in Hard Times, "you can merely maim and distort him."

The Greeks were obsessed with warning of erring too far in either direction. Balance was the key. The Bacchanalians were honoured out of fear of repressing that which honoured the Id, as Freud later would call the animal drives that keep the human balanced and happy.

I think it is the Life Force, this Bacchanalian drive. "The green fuse that through the flower drives my death." A tangled agreement with mortality calls us to persevere through the gray mess of life, the freedoms, the fun, the duties, the responsibility.

Fear is the problem. Fear generates anxiety, which is handy when you need to get out of the clutches of a zealous Judy/nurse bent on installing a hole in your chest that may or may not ever be removed, depending on possible remote metastasis. Yes, I accept that I have behaved a tad irresponsibly avoiding the port. I got support from some HER2 breast cancer women on the international support website for staying away from a port, from ones who have managed years of distant metastases, and further chemo, further herceptin, all without a port. But others on there just said, it depends on your veins, on whether or not the epirubin, the E in FEC chemo, has been able to destroy them or not.

I created chaos in the nurses' scheduling of my port insertion, and setting up my fourth chemo. Am sure they hate me for this. I just got a call rebooking a missed appointment to talk to the cancer centre social worker for Friday, the day after my port installation, which is now scheduled for Thursday morning, while my chemo is now scheduled for that afternoon.

I have good news. I went to see Paul, as I said before, and he told me that a week ago the Government decided that Nupogen, a drug I have to inject into my belly for the ten days following each taxotere infusion, and for which a nurse will come and teach me, on Wednesday, how to do, will be free to those like me without extended health care. Normally, it would have cost me twenty five hundred dollars. Good news.


Ok. Here is, first, the discussion on the HER2 website on taxotere, followed by side effects from herceptin. I will be having herceptin for a whole year, and three infusions, three weeks apart, of taxotere. You will see why, last night, I lay awake experiencing fear, and a sort of helplessness most of the night. I just wanted to say no to further cancer treatment. Then I recalled that with this rare and aggressive kind of cancer I do not have the liberty to quit the treatment.

Before I print it out here from the website, I have to tell you an incredible thing I learned from Denise's oncologist, a researcher in Philadelphia. First, the majority of women in a poll on our support website, not only failed to discover their cancer till it was Stage 3 out of four stages, but had either false negative mammograms, or discovered it themselves at home, and not by mammogram at all. Denise's doctor said that it most likely has been growing in us quietly, lining the ducts in the breast, silently, undetected, for years. For years we have had breast cancer and not known it.

Thread title: Is pain normal with Taxotere
Hi Everyone..Need some advice.
Was given my first lot of Taxotere on Thursday,felt fine for a couple of days then bang the pain started.
The pain is unbareable. My finger tips feel like they have sharp shooting pains going through them,and my nails hurt as well. They are so sensitive. My whole body feels like i have been 10 rounds with a heavy weight boxer. My mouth is full of ulcers.
Taking my pain killers and mouth washes, and all other kinds of medication, but they are not easing any of this.
The lack of sleep is not good either..
Does anyone know how long this will last,or suffered similar symptoms after having Taxotere.
I can't take it anymore and it has only been a couple of days.

Claire x (in Coventry, UK)
__________________

21.06.11-Mammogram Biopsy Ultrascan
24.06.11-Told had Cancer of Right Breast
27.06.11-Confirmed HER2 & 2-3 Lumps in Lymphnodes.Awaiting MRI-CT-Mugger and Bone Scans.
05.07.11-Appt CT Neck-Abdo-Pelvis with contrast
08.07.11-Appt NM Cardiac Ventriculography Rest
11.07.11-Appt NM Bone Whole Body
13.07.11-Appt MRI Scan Breast's and Thorax
14.07.11-Chemo FEC..7 days GCSF Injections.
01.08.11-Consultant confirmed Scans show no Mets
04.08.11-Cycle 2 FEC
To Date.Had Cycle 3 of FEC and Herceptin.Now on Taxotere and Herceptin
Tumour shrunk from 9.5cm to 5.5cms.

#2
JennyB
Senior Member

Join Date: Apr 2011
Location: Townsville, Australia
Posts: 44
Re: Is pain normal with Taxotere


Hi Claire,
I too had taxotere and hated it!! I would get depressed and cry on day 4 like clockwork also had lots of headaches bone and muscle pain so much so persuaded my onc to have another full set of scans at the end of it. In hindsight wish I had waited for a while for that till the effects had gone. I also had finger pain but not so much in the finger nails.
Hang in there not long till its over

Jenny xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - ct and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11

Praying the Herceptin is as good as its hype!!

#3
NEDenise
Senior Member

Join Date: Aug 2011
Location: Philly Suburbs
Posts: 48
Re: Is pain normal with Taxotere
Claire,
I know just what you are talking about. I thought I'd go mad from the pain! Worse that labor! Worse than anything!
Told the onc after round one...she said "take the oxycodone on a schedule". Didn't help at all.
Long story short...after round 2...I told her I couldn't take it anymore...what other chemo is available. I'm stage 3, ER/PR neg...so she said she really, really wanted me to continue.
The new pain management plan...which worked pretty well...was:
Start taking 600mg of ibuprofen, every 6 hours, around the clock, on the day after chemo...even though nothing hurts yet. When the first hint of pain shows up, add the oxycodone, as prescribed, round the clock...whether you feel the pain or not. I was skeptical about taking the meds around the clock, regardless of pain...so I didn't at first. Yow! The pain came rushing back about 2 hours after the skipped dose! I never skipped another dose. After about 4 days...I was down to just the ibuprofen...then no pain meds. What a different experience. Without the pain, I was able to do all 4 rounds...no problem.

Just remember to take a stool softener and some senna...to keep things "regular".

Hope this helps! Oh...and I also had to take my temperature before I took the ibuprofen each time...to be sure there was no fever/neutropenia.
Good luck! You can do it!
Denise
__________________
Age at diagnosis 46
No family history of BC
12/26/10 found lump during BSE
1/11 - needle biopsy
2/11-Lumpectomy and axillary node dissection - Stage 3, ER/PR-, 14/17 nodes
3/11 - Post-op staph infection
4/11-A/C x 4, then Taxol/Herceptin x 4, Herceptin Q3 weeks for a year
8/26/11 finished last Taxol!!!
10/7/11 mastectomy and reconstruction
11/11 radiation x ?

“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ”
– Cavett Robert


Side Effects of Herceptin


Herceptin only
I would like to hear from those who have had HERCEPTIN only with no chemo of any kind before or during treatment. I am a little more than 1/2 way through and have had very few side effects. These are some I've noticed:
. fingernails peel, crack , and split
. drippy nose - occasional , not related to any allergies or cold
. possible connection to bladder infections

I've had no fatigue


Re: Herceptin only
I have been on Herceptin only for a little over a year.Very little side effects,but I definitely have the finger nail issues.
Mom had the herceptin nose and bladder urgency.

Sunday 11 September 2011

"wussit gonna take ta get ya ta put yerself, first, lady? CANCER OR SUMFIN???????

Hope this will be just a short blog. On an important, and embarrassing point: my self esteem versus cancer. Let me rephrase:


"At Stage Left, offstage, hunches a gentlemen named, say, the self esteem coach (a Don Draper lookalike). He reclines, Cary Grant-style, with a cigar and a smart suit, hip haircut. 


I, centre stage, Nora, recite the lines of my daily life, while completely forgetting about this SEC guy, Don Draper,who is obviously hired by the theatre, to supervise me. I am polite when he breaks in, but that is as far as it goes. I get on without him. His star "supervisee" named VEE is a friend of me, the protagonist's friend, which I will refer to by the non-standard title of the COUNTER-TAGONIST, assists in the growth of the PROTAGONIST'S self esteem by the end of the proposed first draft. However, the plot will twist.


Nora admires the self-esteem of VEE from the beginning of their friendship. VEE,however, feels her own self esteem very fragile.


DON DRAPER: NORA, stop running yourself down.


NORA: Sorry!! (whispering) Geez I hate that guy.


VEE: I mean we are too liberated, and smart to need those kind of reminders, correct?


NORA: yes! Don't you just hate these book titles, when you get cancer, like PUT YOURSELF FIRST, DAMMIT: YOU HAVE CANCER, and then there is BOOK OF EXPENSIVE SPIRITUAL TRIPS YOU CAN TAKE: YOU DESERVE IT YOU HAVE CANCER.


NORA: I need an ashram like Julia Roberts doesn't need another novel from Elizabeth Gilbert.


VEE ponders her friend.


DON DRAPER: Why do these books piss you off?


NORA: Oh. My. God. Perhaps we should keep focussing outward? I mean, there are starving, parentless children out there.....


I wrote a blog awhile back called The EgoMania of Blogging. It was my first attempt to describe a concomitant (statistically veriable)series of changes, one might guess the category they belong to, as spiritually,...perhaps not. Perhaps psychologically. But one's physique is deeply connected to one's physic? ...or as we call it, one's psyche? It is in a Jungian way that I use it, by the way.


The upshot is this: stay tuned for a further scene from my Cancer-influenced psyche. Asking for one's rights is a behaviour done by high self esteemed protagonists....at the end anyway.

The Nadir: warning: TMI...you might want to skip this one.

http://blog.beliefnet.com/goodnews/2011/06/dog-saves-abandoned-baby-amazing.htm

Hi again.
Check out the link above to see a brief CNN newsclip of a stray female dog who heard an abandoned baby cry in Argentina and picked it up, brought it over to where her own pups were, and presumably breast fed it? Although they don't mention the breastfeeding, one presumes it, being that dehydration is what kills neglected babies first, correct? Love the story. I always wonder what family pets make of human babies. We have two dogs in our pack in that situation . . . Ari and Dexter. . . good to know they won't be jealous. More like, concerned if the baby cries, right?

This is a blog I am writing because I want to quit treatment. It is a blog I plan to reread on my own time and again to motivate myself to keep going. I will be halfway through chemo in ten days. Then twenty five sunburns that stay forever.....radiation...along with tattoos for the radiation technologist.
In a few weeks I begin a year of herceptin (given me via my left arm every three weeks, I hope) which is the drug that slows down my very fast spreading type of cancer: HER2. My left arm is very sore, still, from the chemo attacking the skin of the veins through which it came in. Can't use right arm, have no lymph nodes there so it is off limits. Sick of people telling me to get the port. Whatev. Heard disgusting things about herceptin and taxotere. I will have toenails and fingernails falling off and going yellow; nausea, diarrhea, mouth sores.

I just feel myself getting weaker and sicker yet there are not exactly people in my house everyday demanding less. In fact, my husband is constantly, "why aren't you up doing the dishes? why can't you do that yourself?" Whatev. It's not like I can change him. It's not like I didn't see him as this kind of person from the very beginning. When I met him, I was in rescue mode, what can I say? When you choose a partner incapable of being there for you from the get go, it is because you always imagine yourself as super strong, super able. You never see yourself with rashes under your armpits and belly, no breast, a hole in your incision, fungus coming out of it, bald head, sensitive vision, and bad mood. As his sister said, "whatever happened to 'in sickness and in health'.

Jordan will do anything I need; he'd do anything for me. He is wonderful, as is Dawn, his partner. So my husband, behind my back, asked Jordan to use his day off re-roofing our 1935 stand-alone garage. Which Jordan did, last Monday. I am still seething about it. Dave "just doesn't get it," our friends say. I beg to differ. He gets it just fine, the goodies related to my illness, that is, that fall his way.

What he doesn't care about it is me. He FINALLY brought up divorce today and I was over the moon at the thought. I was so happy that I thought: "excellent. Now I will dump this stupid cancer treatment, take my chances at the survival numbers game, and get back to doing the dogs myself a hundred percent. Whoo hoo! I will get my strenth back".

On my own, at least, I have a chance of my good friends assisting me with the projects I need done: like installing bookshelves in this house. Dave has never done a project that I uniquely needed doing. Dave prefers to keep my books in wicker baskets on the flooded floor of the basement. I just lost hundreds of dollars of screenwriting books to black mould. Books, to Dave, are like discarded candy wrapping...."stuff" that is in the way. Books to me are the word. And the word is the life. And I only get one.

The divorce conversation, of course, always stops when Dave realizes he will lose half his stuff. Been round that circle a few times. One day I will have a whack of cash and afford to initiate it myself.

On the "up" side, wonderful Ellen drove five hours here with my Bobo, my Bobbi, my bed mate. I can't describe how great it is to have her here on my bed. She and her brothers are reunited. My little lady.

My life needs adjustment and cancer treatments are definitely in the way. I keep deciding, :"yay now I can quit treatment, but then  . . . I have a one in four chance of being alive in five years. My friend, Keith, emailed me a really nice phrase in response to my last blog, about walking a little, taking a rest, walking a little. It felt so very true that I got thinking about times in the past when I needed inspiration and I developed this excellent habit, for awhile, of collecting inspiring quotes from Beliefnet.com and printing them out in a duotang and rereading them. I used to get students to do spontaneous timed writing on one or another of them.

So I went to Beliefnet and under "persistance" found the following ones. If you happen to recall one that inspired you to keep going when you had had enough, feel free to send me them. Of course, the dog one is at the top.

In general, when little Tulip stays for a weekend, or things like Bobbi coming back occur, my heart dances and I am singing little songs aloud about the dogs. I walked into the park on Thursday and all the dogs came running and you would think Justin Bieber had just surprise-visited a grade seven cafeteria. I was like Mick Jagger in a hair parlour. So much love. Jumping and smiling faces of my best dog friends in the world. My people. My angels.

Here are my quotes.

-Archie Griffin
It's not the size of the dog in the fight, but the size of the fight in the dog.


-David L. Weatherford
When faced with a challenge, look for a way, not a way out.

Pray for a good harvest, but keep on plowing.



-Albert Camus
In the depth of winter, I finally learned that there was within me an invincible summer.

"Mile by mile it's a trial; yard by yard it's hard; but inch by inch it's a cinch."

-J.P. Greaves
Strive to realize a state of inward happiness, independent of circumstances.

If all else fails, try reading the directions. (I have long repeated this one, it is so humorous and true.)



-Lucretius
The drops of rain make a hole in the stone not by violence, but by oft falling.

The person who removes a mountain begins by carrying away small stones.


-Chinese Proverb
The gem cannot be polished without friction, nor man perfected without trials


-Charles Kettering
No one would ever have crossed the ocean if he could have gotten off the ship in the storm.

-Mary Anne Radmacher
Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow" ...


Well there you have it. I hope to reread these many times a day. Thank you for your incredible kindnesses to me which are manifold, and multiple. God bless you. Send me a quote if you think of one. Thank you God for Ellen, Joanna, Christine, Adie, Suzanne, Keith, and all of you out there who are kind, compassionate people. Your kindnesses fill my heart and soul and get me to sleep at night with no problem at all.Thank God for sleep!

Thursday 8 September 2011

Chemo 3 done: and it is beating the shit outa me!

I wound up, after a hellish day at the hospital, today, one week post chemo number three, in the prayer room. 

I had my forehead on a chair seat, eyes crammed shut, kneeling there praying, and I thought about how my sister, Rosemary, has been saying my late mom's rosary for me out in British Columbia.  And i felt her prayers.  I deeply felt em.  I felt Leeann's prayers all the way from Utah, Tracey's from England, Cathy Hunt's from Oakville, Keith's and Freya's from Toronto, Suzanne's from NYC, and Debbie's all the way from Texas.  Man, prayer can really travel! 

As I exited, I remarked with a kind of sad smile, on the fact that this hospital prayer room really told it all. There was me, exiting by blessing myself with a crosstouch of my forehead, breast, and each shoulder, while a shoe-less Muslim young man faced the corner, rocking on his heels, silently reciting prayers. A young Muslim woman sat in a shawl, on a comfy chair, just contemplating a point somewhere in front of her a few feet, an unknown target of inner focus. 

How ridiculous to think "so and so is praying to HIS God, and so and so is praying to HER God."  Look up!  It's the same God!!!  Look around. It's the hospital. Where we all end up at the end of it all, no matter what the religion. We look up and/or we look in. Depending on where S/he hears you.

I went to the General Hospital in Ottawa South East (scary for this westender cos i get lost even when not in a chemo fog) for a muga.  They injected radioactive isotopes and after a half hour they scanned my heart functionality to enquire of my heart whether she functions still, with all this chemo trying to kill her. Herceptin, which will be given me tri-weekly for a year begins in October. It kills heart tissue too.


I have a lot of problems and talked with the nice tech about them. As a gift from the heavens, I was given, coincidentally, Kerri, the super smart, super efficient but super empathetic and human-focussed tech who injected my nipple with radioactive isotopes the day before my mastectomy/lymphectomy. 

I came to a decision to suspend chemo for a month till i get stronger to handle it but the radiation resident whom i happened to run into on my way out changed my mind on that.  i will explain later.


Another awesomely kind, super smart like kerri tech named Sara brought me back from a bad moment. She was the one initially injected the isotopes before I got handed over to Kerri. Another angel of mercy. I can never get over that the kindest techs and nurses and doctors work in the most crowded overpopulated General Hospital in the city. Is there a relationship between these two things? I know that the worse the school, the nicer the teachers, I just never knew it worked that way in hospitals too.
 

Some of my problems:
My wound is open and full of fungus.  Chantal, the beautiful French angel, the nurse, was coming each day to clean it and put canasten on the fungus. Yesterday she said it closed.  Indeed, I saw that it closed the day before.  Now today it is open again.

I believe a lot of chemo patients are going thru chemo with incisions that don't heal and keep getting fungus in em.  I had a low grade fever that accompanied the nausea all the past week since my chemo last Thursday (my third chemo). The nurse came on some of the days. God bless Christine for driving me to chemo and suffering through it with me.


 I can't ever get to see my surgeon, Dr. Lorimer. Frustrating.


I saw lorimer's replacement (he is on vacation the past three times i booked with him) who just told me to get this monostat dry powder formula and gave me the prescription.  the pharmacy says they stopped making it ages ago.  so i am back to canasten and the incision is hidden in a fold of sonoma-filled flesh.  sonoma is bloody water that fills the tissues for ages or sometimes forever around an incision. creates moguls.

the chemo is beating the shit out of me.


Remember the resident I cried in front of? My radiation oncologist's resident. Well she is a  radiation oncology resident from the middle east and i ran into her on my way out. I pulled her into a waiting room to get advice from her on my decision. She told me to forget about taking a break from chemo in the middle of it.  She said my case is too advanced to risk the cancer getting a break from chemo as well. Then she told me that some people are in the hospital after each chemo for a week.  some are in the hospital all the time between chemos.  she said "some people die from chemo". then she convinced me that i am actually doing better under chemo than a lot of people. she said if i were her mom or her sister this is the opinion she would give. no matter how sick I was, how weak, how half blind the chemo was rendering my vision.

so i am renewed with commitment to just gut it out.


i wish the incision were not open and the fungus making me feverish.
i hate this. i hate the nausea, the confusion, the weakness. the taste.
my brain has chemo fog.
i get lost when driving.
my mouth tastes like i have sucked on a tailpipe.
i am low and frustrated.
the nurses try to talk me into a port.
my left arm is sore from the chemo beating the shit out of my veins.


i know that too many people get a junior resident accidentally cutting into their lung when inserting the port and i aint riskin it. go online and meet the people with the infections from that mistake. the port is NOT this fantastic thing. Read all the problems with them. I feel positively brow beaten by the nurses.


http://her2support.org/vbulletin/showthread.php?t=31264&highlight=port 

Paul, my oncologist, told me i have the right to refuse a port. so i am insisting they use my left arm instead. it is really sore there. to touch. when i run my fingers along the inside of that arm it smarts.

still. they cant use my right arm. no nodes.


the port deprives you of sleep for a month after insertion.  it stays in for two years no matter what they tell you beforehand.  it is nasty and invasive.  it gets gunked up and cant be used for chemo when it gunks up.  this delays some people's chemos.  the port wound takes forever to heal and then doesnt even heal in some people.  chemo blocks healing.  there are infections with it.  if i say yes to it i step near the Precipice too closely for my comfort. the next thing will be a respirator, i feel. i just cant do it right now.


so. my prayer is that i heal from my left veins well enough to keep taking herceptin and chemo via the veins in my left arm until October 2012 every three weeks.

Please continue to pray for me.  i feel it.  i feel you.  I feel your love.