If I know you, I don’t really care if you read my blog. I mean, please do feel free, but you’re not the reason I write it.

I write for other women with cancer.

And they’re all strangers, because I realized — I don’t know anyone else with cancer.

So I’m always interested to see what search terms lead people here. That’s how I realized a network of breast cancer bloggers existed, and I wasn’t as alone as I felt–by googling things like “latissimus dorsi reconstruction” or ”mastectomy and feminism.”

Recently, I noticed somebody found me by searching for “sexy mastectomy.” I still wonder what, exactly, they were hoping to find.

Every breast cancer support book and site I’ve seen offers some half-assed Sex and Intimacy section, and all of it is absurd. One of the very first pamphlets I was handed–on “Young Women and Breast Cancer,” which enraged me because all of the photos were of 40-year-olds, no one who still gets ID’ed buying beer–offered lukewarm suggestions to spice up your chemo-fied sex life, like stripteasing with your headscarf: “Think of it as the dance of the seven veils.”

Or they give up on it altogether, and offer juicy alternatives, such as ”join a book club.”  

Now, the Booker shortlist is thrilling, but I’d take getting laid any day of the week.

 People love to ask how you found your lump. And here it is:

sex, sir, is how I found the lump, and probably the only way ever would have.

He said, “What’s that?” with my breast in his hand, and the answer was: hell in a B-cup.

I took an apprehensive stab at googling “sexy mastectomy,” wondering what in the world the Internet has to offer on the subject. And the consensus seems to be that the way to be sexy after a mastectomy is to pretend your damndest that it hasn’t happened–to hide it beneath ridiculous shit like this (“Spotlight mastectomy lingerie range that has been heavily and tastefully decorated in Swarovski crystals”).

I also came across this article, “Beauty and the breast: Sex after mastectomy,” by a woman who was also diagnosed at age 24. But far from identifying with the author’s experience, I was frankly appalled by her discussion of breast cancer’s effect on body image–which includes helpful tips like using the food aversion of chemotherapy as a dieting technique.

Re: post-mastectomy sex, she says:

“After I had a fake breast, things got a lot easier. I learned that dressing up in the bedroom was the only way I felt comfortable having sex. I had to pretend that I was whole again. I wore a long, dark movie-star wig, a barely-there skirt and a button-down top (fake breast included) the first time we had sex post chemo and mastectomy. I looked like a hot Catholic schoolgirl and pretty much mauled Adam the second he got out of the shower. The role-playing helped a lot with the uncomfortable parts.”

Now, what gets you off is your own business (until, perhaps, you post it on the Internet). But I hate to think that this is what people googling sex and mastectomy etc. learn about the sexual health and identity of breast cancer patients, as if this experience is or should be in some way representative. Role-playing can enhance a sexual experience, mastectomy or no, but if it is necessary to the sexual experience–because anything else would be “uncomfortable”–I think it speaks to something deeply unhealthy.  I cringed hard at the line “I had to pretend I was whole again.“  Which is precisely what these post-mastectomy products enourage you do do: ”pretend” at your worth as a woman by consuming a stereotype marketed to men.   

As this woman praises her boyfriend:

“Anyone that can get aroused by a bald, single-breasted girl is worth his weight in gold.”

I suppose I know what she means, but it sounds wrong as hell. Like you should be grateful to a man who’ll still fuck you despite your deformities.

Eve Kosofsky Sedgwick, the pioneer of queer theory who died of breast cancer this year, articulates in A Dialogue on Love precisely the sexual dilemma I encountered: that because the  ”requirement” for sexual fantasy is that “the person in the fantasy feels like they’re both you and not you at the same time,” it becomes difficult to imagine yourself  as a sexual entity. She says:

 “Because my body got weirder with the treatment, I kept feeling that I had to choose, and couldn’t. Either the girl in the fantasy would have one breast, or she would have two. Either she would have hair, or she would be bald. Apparently it couldn’t be both ways. But if she was me, a bald woman with one breast, that ruined the fantasy–and if she wasn’t me, wasn’t marked in both those ways, that ruined the fantasy, too.”

But the sexual problems one encounters with cancer aren’t strictly psychological, but also physical. The feeling of being slapped with menopause in your twenties as a result of the chemotherapy and Tamoxifen isn’t something I can quite adequately explain.  Suffice it to say you get to feeling that your plumbing’s a little bit defunct, and it’s beyond frustrating when your body won’t answer to your brain.

But the worst thing may have been having to go off the Pill. Because of the Tamoxifen I can’t take any form of hormonal contraception. And I hate condoms. Hate. Condoms. They not only make me uncomfortable–all sex seems like casual sex–but paranoid. Especially when I don’t get periods as a monthly confirmation of my body’s proper functioning, and am on a drug that causes birth defects.

“You cannot get pregnant,” the doctor said. “If you get pregnant, you will have to have a termination.”

A mandate which suddenly seemed just as oppressive as the pre-Roe v. Wade world.  Because I realized that my right to choice was no longer a choice at all.

And the really fucked up thing is that I may never be able to get pregnant anyway, so the paranoia and precaution could be for nought.

And yes, it’s true, I miss my breast too. But my attachment to my breast kind of ended when I found out there was cancer in it. After having it poked and prodded umpteen times by health professionals in brightly-lit hospital rooms, it became difficult to let it be seen “socially” too.

Audre Lorde writes in The Cancer Journals of her erotic attachment to her right breast:

“The anger that I felt for my right breast last year has faded, and I’m glad because I have had this extra year. My breasts have always been so very precious to me since I accepted having them it would have been a shame not to have enjoyed the last year of one of them. And I think I am prepared to lost it now in a way I was not quite ready to last November, because now I really see it as a choice between my breast and my life, and in that view there cannot be any question.”

In short, I’m no poster girl for mastectomy acceptance. I don’t embrace my scars or anything self-helpy like that, and I’m not crazy about the way I look. But I’m also not plain crazy, either. I’m not planning on dressing up in a schoolgirl outfit or a Swarovski bra and heading out to land a man.

 I’ll just try and assume that any man or woman I’d ever be with would find the fact that I’m alive far more attractive than having a breast, and nipple,

and cancer.

Recently I’ve been rather caught up in the process of getting my ileostomy reversed, but it occurred to me that I’ve neglected documenting my progress in recovering from my chemotherapy.

My peripheral neuropathy continues to cause me lots of problems. My fingers, feet and toes continue to all feel numb and uncomfortable. Worryingly, I’m tempted to say that the problems in my fingers are actually worse, not better. I now struggle to touch-type at any kind of speed, without making lots of mistakes. Which is very frustrating indeed.

My tiredness feels hugely better. I suspect having a reasonable gap since I last considered this really highlights the change. But it certainly feels like the tiredness that I’m experiencing now is much more related to the lack of sleep that I’m going through with the ileostomy reversal, rather than lingering side-effects from the chemotherapy.

My sense of taste is now working fine, but there are some things that I would have previously described as being some of my favourite foods that just aren’t any more. Weird, but hey, I can live with that.

My problems with dry skin, and all the resulting flaking and peeling have all gone away. I can’t even remember when it went away, but it has. Although it’s no longer a problem, I may continue with the moisturising routine anyway. New age man and all that

I am still feeling the cold, and find it very difficult to get warm. As per the last post on this topic, I eventually broke down and reprogrammed the house temperatures. And I still don’t ever feel completely warm, despite everyone around me being fine. I’m beginning to suspect that this may actually be something to do with my peripheral neuropathy making my fingers and feet feel cold to me, even though the actual temperatures are perfectly fine.

So, overall, it’s progress!

Three days of relative normalcy before I’m due to begin chemo. I know they’ll skip by almost thoughtlessly, and in the weeks and months to come I’ll long for that sense of health. Yesterday the NHS treated me to a battery of tests–bone scan, MRI, CT scan, mammogram–endured with surprisingly few complicaitons and refreshingly good humour. I was in near tears with laughter in the MRI waiting room as two armed guards led in a handcuffed inmate on a metal lead, clanking his chain while I considered the questionnaire: “Do you have anything metal on or about your person?”

I went to the gym this morning for possibly the last time. I left feeling light, unburdened, capable, and came home to a delivery of cardboard boxes in which to pack and deliver my books, my life–a more complicated undertaking than I originally surmised.

More and more today I’ve doubted my decision to stay here. I still have two days to call it all off, I suppose. I’m riddled with guilt; I don’t deserve the support and kindness they’re extending me, and yet I’m taking it all anyway.

I will be trapped wherever I go.

Tomorrow I’ll cut my hair short–become grotesque in stages.

I’ve been able to sleep lately, but am constantly exhausted anyway. It’s been a week. I’ve surprised myself by hardly crying, by making arrangements, or moving toward making them. But I can’t anticipate how it will be to have my body, mind and emotions ruled by drugs. To be so removed from life.

Though I wonder whether anyone will actually notice a difference in my absence.

Why is diet so important for dogs with cancer and specifically for dogs with mast cell tumor cancer (MCT)?  Furthermore, why is diet even more important when a dog with MCT cancer is on Palladia?

I have been researching dog cancer diets and getting information from our veterinary oncologist, and am considering a visit to a local holistic veterinary oncologist.  (At that statement, many owners of dogs with cancer will be appalled that I have not already been to one!  Meanwhile, the non-dog owners, and probably some of my friends and family will roll their eyes and say I have gone way off the deep-end now!  That is ok.  I can take it from both sides.) 

If you have a dog that is recently diagnosed with cancer, I recommend visiting with both a veterinary oncologist and holistic vet.  This method provides both the standard medical treatment plan as well as a holistic treatment plan, including diet.

Be aware that ANY change in what the dog usually eats can cause an upset tummy or diarrhea in a dog.  This is especially a problem for dogs with mast cell tumor cancer because the histamine released by the mast cell tumors can upset the dog’s stomach.   For more information on that, I recommend reading article on the Dog Cancer Blog at http://www.dogcancerblog.com/why-use-stomach-medication-for-mast-cell-tumors/. 

Furthermore, often the treatments, including Prednisone and Palladia, have side effects that can upset the stomach or cause diarrhea or worse.  Palladia’s gastric side effects can potentially be serious which is why often oncologists prescribe supplemental medicines, along with the Palladia, to protect the dog’s stomach.  If the dog has diarrhea, or bloody stool, for example, that would stop the Palladia treatment at least temporarily.  For more information on Palladia side effects see http://www.drugs.com/vet/palladia.html.  Rosie’s oncologist took her off of Prednisone when she started on Palladia.  She stated that both medicine might be too hard on her sensitive stomach. 

I can’t emphasize enough to TALK to your veterinary oncologist BEFORE making any changes to your dog’s diet, especially if you dog is taking Palladia.  Learn from my mistake.  I tried to change Rosie to a premium “grain-free” dog food shortly after starting Palladia and Rosie got diarrhea.  Rosie’s oncologist was not happy with me at the time because she could not tell if the diarrhea was from the food change or from the Palladia.  She had no choice but to stop the Palladia treatment until the diarrhea was under control.  Rosie went several days, almost a week without receiving Palladia.  This was scary to me because I had read online about several dogs whose cancer quickly returned once the Palladia was stopped.   I was given instructions to NOT change her diet until after Rosie was on Palladia for 12 weeks.  Once Rosie went back to her regular food, she did not experience any more diarrhea and has had a successful Palladia treatment to-date.

Now, Rosie’s oncologist has approved for me to SLOWLY change Rosie over to a grain-free diet.  It is important to make any diet change gradually so as to not upset the dog’s digestive system.  If there is diarrhea or bloody stool, the Palladia again would need to be stopped and we would run the risk of the cancer returning.  So I don’t want to risk that because of the diet change.  

Lots of information is available online, sometimes conflicting information about diets for dogs with cancer.  Many people recommend home-cooked meals.  Some recommend raw diets.  Some recommend specific brands of grain-free dog food.  Many recommend additional supplements and enzymes.  This is why I recommend talking to your oncologist and a holistic vet so that, with you, they can provide a specific diet for your dog’s cancer and your situation.

Since I work full-time and Rosie eats 4 small meals a day to prevent stomach upset and diarrhea, home cooking was not very feasible for me.  So I am in the process of gradually changing her over to a natural, premium grain-free dog foood which my veterinary oncologist recommended.  I’m not going to recommend any specific food in this blog.  I urge you to discuss the topic with your oncologist and holistic vet.

Dr. Dressler has some good information on diet on his Dog Cancer blog, www.dogcancerblog.com and more specifically in his book, which has additional information on diets for dogs with cancer.   I have some links on the right side of this blog also with additional information.

Good luck to each of you.

(but not) to do what i want any ol’ time. i’m just unhooked momentarily from tubes, which i have to say, is in fact,  heavenly.  i’m also really tired a can’t feel my way to type.  so here’s the round ‘up you’ve all been eagerly awaiting and hoping against hope for.

november 15,  a sunday, i checked into casa doyle for some amazing fun, food and frivolity.  serioulsy, i could totally live there as the non-participating sister wife.  dude, everyone needs a housewife and my dearsest of friends does not dissapoint.  there was coffee ready every morning.  we cooked breakfast , went out to lunches, ordered in for fun and made some spectacular dinners.  mostly i just stood there when the spectaular dinners were emerging.  there were two mammas, two nurslings, and (eventually two) very happy daddies with ex-disney girls for wives. 

monday, november 165th through wedesday, november 18th my friend drove me to the pathology lab that does stem cell harvesting.  thursday,

november 19th i was admitted here to the bmt (bone marrow transplant) unit.  all bmt units are generally still referred to as such since autologous and donor stem cell transplants are relatively new. well, new enough not rename the units yet.my havest days were uneventful.  so was my check-in day.then day -5 (11/20) i started high-dose ICE chemo.  that lasted through the weekend and finished up on the early pat of day-2 (11/24).  the days -2 and -1 were mostly fluids and resting, and let me tell you, plenty of barfing.  nasty!

i got my stem cells back on wednesay, novemeber 25, day 0.

we’re at day +3, and it’s saturday, november 28th.  i spiked a high fever last night, as was expected at some point.  i got all of my lines, blood and urine cultures right away.  then i woke up after a few hours of iv anbtiotics and needed some benadryl to combat the red man syndrome i was getting.

so there it is, my  life in a nutshell so far.  i’m sure i missed plenty and didn’t talk any about the hospital drama with nugget visiting, but they’ve already beaten me back to a half slumber with the bendaryl and reconnected me while i typed.

more to cone, i promise!

(NaturalNews) The November 25 issue of the Journal of the National Cancer Institute contains a report about the long-term side effects experienced by men who received cisplatin-based chemotherapy for testicular cancer. Severe neurological side effects, discoloration of the hands and feet when exposed to the cold (Raynaud-like phenomena), tinnitus, and impaired hearing were found to be common in men who received chemotherapy as opposed to those who did not.

Men who received cancer treatment between 1980 and 1994 were given follow-up surveys between 1998 and 2002 to assess their conditions after treatment. Researchers found that in the decades following treatment, those men who received any form of chemotherapy were significantly more likely to be experiencing long-term negative side-effects as a result.

In the chemotherapy group, 39 percent of men reported Raynaud-like phenomena, 29 percent reported paresthesias in the hands or feet, 21 percent reported hearing impairment, and 22 percent reported tinnitus symptoms.

Marianne Brydoy, M.D., from Haukeland University’s Department of Oncology in Norway, conducted the study with the help of her colleagues to verify the correlation between high rates of long-term neurological damage and chemotherapy. Since the control groups who did not receive any form of chemotherapy experienced far fewer neurological damage incidents than did those who received chemotherapy, the results are indicative of an underlying problem with chemotherapy treatment.

Experts aim to reassess proper treatments for testicular cancer. They hope to minimize the toxic side effects of chemotherapy by reformulating the levels of cisplatin used in chemotherapy treatment. According to their research, 20 mg/m2 a day is the maximum safe dosage of the drug.

Comments by Mike Adams, the Health Ranger

As this study goes to show, chemotherapy is poison. While chemo may at first appear to be working by shrinking a tumor, it is in fact a systemic poison that will inevitably destroy cells throughout the body, most notably in the brain, heart, liver and kidneys.

The only way to protect yourself from these devastating effects of chemotherapy is to take protective nutritional supplements before undergoing chemo treatments. But oncologists sternly warn patients against consuming such nutritional supplements by citing one of the most oft-repeated myths of the cancer industry: “Nutritional supplements block the chemotherapy” they say!

It’s a lie, of course, but it’s been repeated so frequently by the cancer establishment that they can’t even remember who uttered it first… or why. Truth be told, there is absolutely no science backing up such a false belief. No credible scientific study has ever found that antioxidants or other immune-boosting supplements impede chemotherapy treatments at all. In fact, many supplements potentiate the chemo for cancer cells while simultaneously reducing its toxic effects on healthy cells.

Then again, if cancer doctors knew anything at all about nutrition, they probably wouldn’t be in the business of poisoning people with chemo in the first place.

Sources for this story include:
http://www.eurekalert.org/pub_relea…

http://jnci.oxfordjournals.org/cgi/…

3020838    หลักการของเคมีบำบัดและการรักษาทางชีวภาพ    Principles of Chemotherapy and Biologic Therapy

หลักการใช้เคมีบำบัดและการรักษาทางชีวภาพในการรักษาผู้ป่วยโรคมะเร็ง การดูแลขณะรับการรักษา การรักษาภาวะแทรกซ้อนต่างๆที่เกิดขึ้นจากการรักษา

(Principles of chemotherapy and biologic therapy in the management of cancer patients, medical care during the treatment, and management of treatment-related complications.)

(3020838 จุฬาลงกรณ์มหาวิทยาลัย)

One of my 2 favorite holidays is Thanksgiving (the other is New Years Eve, but we’ll get to that at a later point). I think a day that revolves around not only giving thanks, but eating some seriously hardcore amounts of delicious food is just awesome. Also, I think I have much, much more to be thankful for than most people. After all, I’m still alive.

Like most people have probably done, I’ve decided to create and share a list of the things I’m most thankful for this year:

• To be alive: After finding a tumor in my belly/pelvis that grew so big so quickly that I looked 9 months pregnant within 3 weeks (imagine that on a 5′3″/105lbs. body), spending 9 days in ICU intubated on a ventilator + heart monitor + tube to drain my bowels since they were blocked and shutting down by said tumor, a month in the hospital and basically almost dying (the doctor my dad now calls the Grim Reaper told my dad on the Friday of the 9 days I was intubated that they hadn’t expected me to live past that previous Wednesday)….you can pretty much be sure positive I’m most thankful for even being around for Thanksgiving this year. I definitely have to give a huge thanks to God on that one. And every single person who took the time to visit me in the hospital.
• For my medical team: They haven’t, and won’t, give up on me. Helps take the fear of this long, daunting treatment away. Plus all the nurses and other staff I’ve gotten to know have such big hearts, they’re really good people. They have to deal with some hard situations every day, and yet they’re genuinely interested in helping you get better. It’s a lot easier to tough the week out when you deal with good people, instead of cranky people who hate their job. They make my hard weeks easier.
• Spending Thanksgiving at home: Instead of spending it hooked up to a bunch of chemicals and inside of a hospital room, I get to be with family and friends. Such a plus, to think I get to be at home and well enough to eat. You never realize how much you take that for granted until it’s put right in front of you.
• New beach cruiser: Biking (along with writing) is a passion of mine. To wonder if I’d ever bike again was hard. Now? To own a bike that is so perfect for me it’s unreal, and to ride it, gives me so much sense of purpose and I’m thankful for that.

• For my church family: If not for them, and their prayers, my progress would be no where near the stage it is at now. Not even close. And of course, I’m uber thankful for every single person who has been praying for me at this time, regardless of their faith. It all helps me at the end. Thank you to everyone at Hope Chapel at HB for your prayers and well wishes, and always asking how I’m doing every time I make it to service (and being understanding when I can’t).
• Boyfriend, Derek: At 24, most guys prefer dating casually, and aren’t ready (or interested) in spending the time needed to invest in a serious relationship. Whenever he could, he’d visit me at the hospital (as much as work would permit). He came to see me and sat by me in ICU. When I was intubated, he held my writing notepad for me and did anything I asked him to based on what I needed. He helped me to the bathroom when I needed it, he still cleans out my puke bucket for me (regardless of how disgusting it smells/looks) no questions asked and without hesitation. He takes me to appointments and spends the night in the hospital when my parents can’t. I’ve never known so much understanding from anyone than I’ve gotten from him during this time. And I’m most thankful for his own words – “Hun, I love you. Look at it this way, if you hadn’t gotten sick, we wouldn’t have broken up. So I see no reason why we would just because you got sick.”
• My best friend, Cameron: This guy spent almost every day at my bedside when he found out I was sick and admitted to the hospital. And when I was in ICU? He came immediately + was there every single day, all day (and then some). He held my hand, he wore his Dolce and Gabbana dog tag because I have one too (but his has diamonds ), and he knew I’d recognize and react to it. Even before I got sick, this guy saved my life. Whether it was because he let me show up at his doorstep at all hours each time my ex broke my heart, or he carried my completely wasted self out of a bar so no one would bother me, this guy has been the most genuine, honest, real, non-judgmental, generous and incredible human being I’ve ever been lucky enough to meet and know. Let alone to call him my best friend. Cameron is one of the reasons I’m motivated to get up in the morning when all this feels like it’s becoming too hard.
• My best friend, Heather (G.): Not everyone, especially at 26, can say they’ve had an absolute best friend for almost 20 years (currently at 17 going on 18 years! ). Marriages hardly last that long these days. Yet this girl has stuck by me (if it were me, I’d feel like I was “dealing” with me because of the crazy things I’ve done) for that long. She’s watched me act seriously stupid while high on drugs, show people what a bitch I can be because of how mean I get when I’m drunk, make horrible mistakes with guys, been there for me when I’ve had to confide extremely terrible thoughts and feelings I didn’t know how to handle. We’ve experienced the trials and enjoyments of elementary school and junior high together, survived the difficulty of dealing with me moving away just before high school and to this day she’s the kind of person I want to strive to be like. She visited me almost every day in the hospital, too. In fact, I remember one time that she came with her mom. The looks on their faces, and seeing them fighting so hard not to cry, was probably one of the most difficult moments for me. I never, ever want Heather to know pain so to see that look killed me. She’s my most perfect best friend ever. No one I’ve met is as beautiful and wonderful as she is. Heather is another reason I’m motivated to wake up each morning.
• Family: I don’t even want to think of how hard this has been on my parents, my brothers and my extended family. Not in a million years could I imagine being in their position, so their strength helps me deal with this and feel like that no matter what happens, it’s all ok in the end. They’re always at the hospital every day, they constantly check on me, see if I need anything, clean out my puke bucket, get me whatever food I need so I don’t have to eat the hospital food. They do everything. I owe them my life.
• God/Jesus: First of all, He must have some crazy plan for me if I’ve lived through all I did back in May. Plus He died on the cross so that we could live. What’s not to be thankful for about that?!

With so much for me to be thankful for, I’d really like to hear what things other people are thankful for in their life. Feel free to leave a comment if you care to share what makes today special for you, the people and things in your life that make this Thanksgiving more than just another holiday or this year just another year.

    I want to wish all of you a very Happy Thanksgiving.

     This has been an amazing year for me and I have so much to be thankful for.

     First of all, I am thankful for my Family, for they were the driving force in getting me through these last 8 months.  Next I want to thank my Doctors and their medical staff for their excellent and compassionate care.    I want to thank all my friends who have supported me prayerfully and emotionally during this time of treatment.  Each of you has been a wonderful help to me and I thank God for all of you.  It has been the cumulative effect of everyone working together that has helped me to achieve the wonderful results that I have so far.  I still have a long year ahead of me and I know that you will continue to be there for me. 

“Now thank we all our God, with hearts and hands and voices.

What wonderous things He has done, in whom our heart rejoices.”

This entry was written by one of our volunteers:

As I write this, it is 10 years ago today that I had my lumpectomy.  The surgery was one week before Thanksgiving, which is the big holiday in our family.  For more than 30 years we had hosted a large group at our table.  Preparing that big dinner so soon after surgery was a challenge for me, but everyone pitched in and helped.  The coping style in our family always includes humor.  My husband was telling everyone, “Remember, when we cut the turkey, say ‘White Meat’, not ‘Breast’!”

 One of our Thanksgiving dinner traditions is to go around the table and have all of us say what we are thankful for.  When it was my turn, thinking of the pathology report I had received the day before, I exclaimed, “I’m thankful for clean margins and negative nodes!”

 During that time, between diagnosis and surgery, after the lumpectomy, then through the months of chemotherapy and radiation that followed, so many people around me extended themselves countless times in an incredible variety of ways.  My family and friends were generous in bringing us meals, taking me to treatment, sending flowers, notes and gifts.  Each and every one of them touched me in a different way.  They came to visit from near and far. Three of my visitors traveled from as far away as Boston and Dallas!

 In one of the many books about breast cancer that I read shortly after diagnosis, I found this tip:  make a list of things I needed and keep it relevant and handy.  Then when someone said, “What can I do to help?” I would have a ready answer.  Some examples were to have someone return a library book, stop by for a cup of tea, pick up an item at the grocery store.  It made them feel good to do something that was helpful and that I actually wanted or needed.

 My chemotherapy lasted six months and in the middle of that treatment I had the six weeks of radiation at a different facility.  You can imagine how I was dragging, especially on the days when I had to go to both.  Friends and family who took me to treatment during that time generously gave me help and support.

 Someone once asked me what was the most helpful thing anyone had done for me.  After reflection, I answered that it was the variety of all the different things people had done.   Thinking of how much everyone did to help, support and comfort me during my treatment still fills me with a warm glow.

 In the 10 years since, several people in my life have been diagnosed and treated for breast cancer.  Each time I have reached out with whatever support I could give.  Following the example of the many who had been there for me, I called, visited, gave gifts, sent emails, went along with them to doctors appointments and treatment, brought food, ran errands. 

 Now, as I approach Thanksgiving 10 years later, I reflect on how thankful I am for the wonderful people I am lucky to have in my life.  They buoyed me through my treatment and in the years since.  And I wonder:  is there any way that I can repay them for all the kindness, help and support they have given me?  Or perhaps the best way to thank them is to “pay it forward” and do for others what they so generously have done for me. 

 What are you thankful for? Leave a comment or share your story on our Facebook Page.

FHN9XUUGBCPF

Click jmage for the Index of Greg's Prostate Cancer Chronicles

Doctors concerned over complementary cancer treatments

After telling you how I found alternate therapies, I was annoyed to hear an ABC AM broadcast warning patients against taking supplements whilst undergoing other traditional treatments such as chemotherapy.

Read transcript here – or – listen to the AM segment here. Some quotes are:

“Part of the problem is communication.  All too often doctors don’t ask and patients don’t think to tell. Either way, Professor Cohen says it’s an attitude that needs to change. “

MARC COHEN – professor of complementary medicine at RMIT: Patients often don’t want to tell their doctors what they’re taking because they’re afraid the doctors won’t approve and doctors I think are being reticent to ask about them because if they get the information they don’t really know what to do with it.

The head of the Cancer Council of Australia, Professor Ian Olver, says “some treatments can make chemotherapy either ineffective or more toxic.”

This is an unneccessary scare campaign that does nothing to help the patient. Many alternate therapies work – or – can do no harm as is the case with lactoferrins and bovine cartilage.  Before embarking on any alternate therapy, you owe it to your doctor and yourself to ask the question, “Will this interfere with my current treatment?”.   A “don’t know” response is not acceptable. Your doctor has a responsibility to advise you accurately.  Accept nothing less.

Read Just What the Doctor Ordered about how lactoferrins ASSIST chemotherapy

“It sounds like an alternate reality: Ice cream so good for you it’s prescribed by doctors.

According to Food Week Online, researchers at the University of Auckland are working on developing an ice cream that combats the side effects of chemotherapy. They’re working in partnership with Fonterra, New Zealand’s largest dairy.

The ice cream, called ReCharge, employs active ingredients from dairy products to relieve diarrhea, anemia and lack of appetite in people undergoing chemotherapy. Studies already have shown that milk fat and another milk component called lactoferrin can protect the lining of the intestine.

“Earlier trials in the laboratory found that weight loss and damage to the gut lining were significantly reduced by the active ingredients,” said Geoff Krissansen, a University of Auckland professor, told Food Week. ”There were also marked improvements to the immune system and blood markers.”

So if your Doctor or Urologist questions your choice to use lactoferrins because, “it is not in my textbooks”, tell him to Google lactoferrin in the news.

Two ready sources of Lactoferrin capsules are:-

• Bio Source “Immune Plus” from Prieceline Chemists
• Blackmores “ImmunoDefence” from any Chemist

75% Physicians Won’t Take Chemotherapy
The great lack of trust is evident even amongst doctors. Polls and questionnaires show that three doctors out of four (75 per cent) would refuse any chemotherapy because of its ineffectiveness against the disease and its devastating effects on the entire human organism. This is what many doctors and scientists have to say about chemotherapy:

“The majority of the cancer patients in this country die because of chemotherapy, which does not cure breast, colon or lung cancer. This has been documented for over a decade and nevertheless doctors still utilize chemotherapy to fight these tumors.” (Allen Levin, MD, UCSF, “The Healing of Cancer”, Marcus Books, 1990).

“If I were to contract cancer, I would never turn to a certain standard for the therapy of this disease. Cancer patients who stay away from these centers have some chance to make it.” (Prof. Gorge Mathe, “Scientific Medicine Stymied”, Medicines Nouvelles, Paris, 1989)

“Dr. Hardin Jones, lecturer at the University of California, after having analyzed for many decades statistics on cancer survival, has come to this conclusion: ‘… when not treated, the patients do not get worse or they even get better’. The unsettling conclusions of Dr. Jones have never been refuted”. (Walter Last, “The Ecologist”, Vol. 28, no. 2, March-April 1998)

“Many oncologists recommend chemotherapy for almost any type of cancer, with a faith that is unshaken by the almost constant failures”.(Albert Braverman, MD, “Medical Oncology in the 90s”, Lancet, 1991, Vol. 337, p. 901)

“Our most efficacious regimens are loaded with risks, side effects and practical problems; and after all the patients we have treated have paid the toll, only a miniscule percentage of them is paid off with an ephemeral period of tumoral regression and generally a partial one” (Edward G. Griffin “World Without Cancer”, American Media Publications, 1996)

“After all, and for the overwhelming majority of the cases, there is no proof whatsoever that chemotherapy prolongs survival expectations. And this is the great lie about this therapy, that there is a correlation between the reduction of cancer and the extension of the life of the patient”. (Philip Day, “Cancer: Why we’re still dying to know the truth”, Credence Publications, 2000)

“Several full-time scientists at the McGill Cancer Center sent to 118 doctors, all experts on lung cancer, a questionnaire to determine the level of trust they had in the therapies they were applying; they were asked to imagine that they themselves had contracted the disease and which of the six current experimental therapies they would choose. 79 doctors answered, 64 of them said that they would not consent to undergo any treatment containing cis-platinum – one of the common chemotherapy drugs they used – while 58 out of 79 believed that all the experimental therapies above were not accepted because of the ineffectiveness and the elevated level of toxicity of chemotherapy.” (Philip Day, “Cancer: Why we’re still dying to know the truth”, Credence Publications, 2000)

“Doctor Ulrich Able, a German epidemiologist of the Heidelberg Mannheim Tumor Clinic, has exhaustively analyzed and reviewed all the main studies and clinical experiments ever performed on chemotherapy …. Able discovered that the comprehensive world rate of positive outcomes because of chemotherapy was frightening, because, simply, nowhere was scientific evidence available demonstrating that chemotherapy is able to ‘prolong in any appreciable way the life of patients affected by the most common type of organ cancer.’ Able highlights that rarely can chemotherapy improve the quality of life, and he describes it as a scientific squalor while maintaining that at least 80 per cent of chemotherapy administered in the world is worthless. Even if there is no scientific proof whatsoever that chemotherapy works, neither doctors nor patients are prepared to give it up (Lancet, Aug. 10, 1991). None of the main media has ever mentioned this exhaustive study: it has been completely buried” (Tim O’Shea, “Chemotherapy – An Unproven Procedure”)

“According to medical associations, the notorious and dangerous side effects of drugs have become the fourth main cause of death after infarction, cancer, and apoplexy” ( Journal of the American Medical Association, April 15, 1998)

source: http://www.curenaturalicancro.com/2-physicians-refuse-chemo.html

Chemo drugs destroy brain cells
Drugs used to destroy cancer cells may actually be more harmful to healthy cells in the brain, research suggests.

A team from New York’s University of Rochester found several types of key brain cell were highly vulnerable to the drugs.

They say it might help explain side effects such as seizures and memory loss associated with chemotherapy – collectively dubbed “chemo” brain. The research, on mice, is published in the Journal of Biology.

Drug therapy for cancer can prompt a wide range of neurological side effects, even the onset of dementia. But they were thought not to be directly linked to the drug treatment itself. Instead, some doctors have put them down to the patient’s vulnerable psychological state.

The latest study found that dose levels typically used when treating patients killed 40% to 80% of cancer cells – 70% to 100% of brain cells. Several types of healthy brain cell continued to die for at least six weeks after exposure.

Common drugs tested
Lead researcher Dr Mark Noble said: “This is the first study that puts chemo brain on a sound scientific footing, in terms of neurobiology and cellular biology.”The Rochester team carried out tests with three drugs used to treat a wide range of cancers: carmustine, cisplatin and cytosine arabinoside.

All three drugs were toxic to several types of brain cell whose job is to repair other cells in the brain – even at very low concentrations. They also killed off oligodenrocyte cells, which play a key role in the transmission of messages around the nervous system.

The researchers suggest damage to cells in the hippocampus, which is responsible for memory and learning, is most likely to explain chemo brain symptoms. Professor John Toy, Cancer Research UK’s medical director, said: “The doses of therapy needed to treat cancer while leaving the body’s healthy cells as unharmed as possible is a fine balance judged by experienced specialists.

“They aim to maximise benefits and minimise damage. Unfortunately side-effects can include toxicity to the brain.
“This research in mice may hopefully suggest new ways of researching how this toxicity might be overcome.

“It is important to remember, however, that all presently available cancer treatments have gone through extensive clinical trials to ensure that their benefits outweigh unwanted effects. “No patient should stop their treatment because of this research.”
The researchers said it might be possible to add protective agents to chemotherapy drugs. They also suggest further work to pinpoint which cells are most at risk.

source: BBC UK

I can’t believe it. Something worked! The results of last Friday’s CT scan are in, and while anecdotal (I won’t see the report until this Friday), I’m going to take the doctor’s “Your scans look better… good news all around” as a positive thing.

So let’s take stock: no symptoms (other than a mildly puffy left leg); declining fatigue; recovering cardiovascular fitness; renewed interest in culinary pursuits; hair growing in. One might be tempted to forget one has a medical problem.

Which seems to be a habit for me. Even when I’m down in the dumps, if I can just get the dog walked and the kids fed, maybe some grocery shopping done, I really have to remind myself (or step out of the shower and look in the mirror - yowza!) that I’m sick. So now that I’m starting to feel like a fully formed human being, that reminder every three weeks (and you can’t possibly visit The Cancer Factory without knowing you have a problem) might get increasingly annoying.

Rest assured, though, that I’m going. And adding Avastin to the top of my “Thanks” list! Let’s hope the fix keeps working; I could get used to this.

Click jmage for the Index of Greg's Prostate Cancer Chronicles

I have survived a Stage D Prostate Cancer (Terminal) with a Gleeson Score of 9 (very aggressive) with bone mestastices throughout my skeleton (bone cancer).  Upon diagnosis, I was advised that there was no point in operations, chemotherapy or radiation as the cancer was too far gone.  I was deemed to be palliative.

So, eighteen months later, why should I be in remission?

Having discounted the options above, I submitted to Hormone Therapy having a three monthly, slow release implant targeting the production of testosterone. These implants produce chemical castration with the loss of libido, withdrawal of the testes and feminisation of the body. They effectively reduce/stop the production of testosterone upon which Prostate Cancer cells feed.

There is another option – castration which is often used.

This treatment typically controls the growth of the cancer for around two and a half years in 85% of patients, when it becomes no longer effective. When that happens, there is only chemotherapy or radiation when the final decline begins.

So what makes me atypical?

In my experience of others with prostate cancer (father, grandfather and father-in-law, etc) there was an eerie silence about their conditions with no thoughts of remission.   In my fathers case, cancer was such a boogie that he could not mouth the word – he referred to it as the “Belly Dancer” whilst others referred to “the big C”.

I find a similar attitude amongst my contemporaries. Few of them question their doctors or investigate alternate therapies. They seem to be satisfied with, “My doctor says …”.  The problem I find with this is that it is rare for two doctors to have the same opinion about their patient’s prostate cancer.   In practice, there are no Prostate Cancer specialists.  Your doctor refers you to a Urologist where prostate cancer is only one of the complaints s/he deals with and when they can do no more, you are referred to an Oncologist who only wants to submit you to chemotherapy and/or radiation.

This happened to a neighbour of mine.   He asked the Oncologist what chemotherapy would achieve and was told, “I can’t tell you – everyone is different”.  Basic Google research (verified by my Urologist) will show that, with prostate cancer, chemotherapy or radiation will not add one extra day to the patients lifespan.

Lack of communication between doctors and patients is undoubtedly the greatest hurdle that cancer patients face.  Doctors are frightened to tell you anything unless you ask the specific question.  Patients are too inexperienced with cancer to know what questions to ask.

In my case, I believe remission is due to my questioning mind and being open about discussing my situation on this Blog.  Confronted head on with my mortality at diagnosis, I avoided denial and went to work on seeking out alternate therapies which I will discuss more with you.

Struck off and convicted for fraud and involuntary manslaughter in Italy, under investigation in the Netherlands, yet baking soda salesman and cancer quack Tullio Simoncini is always on the lookout for more chickens to pluck. 

We know that he is co-owner of a television show in the USA that deals with alternative medicine and conspiracy theories.

Lately reports have come in about new patients, mainly from Mexico but also from Brazil, who are facing the long journey to Italy to be given the sodium bicarbonate that will cure them from their cancer – or so they think.

Our Italian friend WeWee has done some research and found out how this sudden influx of new clients has come about.

UFOs and Aliens

It turns out that Simoncini had himself interviewed on Mexican tv by Jaime Maussan, a UFO/paranormal sensationalist with his own tv show in Mexico. Maussan is a celebrity in South America. He is obsessed with UFOs, aliens and everything paranormal and is the author of hundreds of scoops on UFO sightings and personal meetings with extra terrestrials in all shapes and sizes (penguins turning into balloons and flying horses.) The odd thing is though that the UFOs and aliens are always only seen by him. No UFO group wants to be associated with Maussan; they all think he is a fake and he his “discoveries” been debunked by many skeptics as well. Maussan is also the man of the hoax regarding the “alien” that was found in a trap in Mexico. The alien turned out to be a monkey’s skeleton:

Simoncini: hero, genius, maverick

In his interview with Maussan, Simoncini paints a picture of himself as a hero, a  genius and a brave maverick, robbed of his title and forced to flee from one country to another by mainstream doctors and scientists who fear the consequences for their incomes of his great discovery.

In the interview, Simoncini claims that his treatment results in the disappearance of the cancer in only 3 to 4 days. In only 6 days, no trace of the cancer can be found. However, when you analyse his testimonials, his patients are either not cured or had conventional treatment before going to Simoncini.

He claims a success rate of 90%. For terminal cancers he claims a lower success rate, but this is because these patients have usually followed conventional therapy when they come to him and this compromises their health to such an extent that even for him it is difficult to bring about a complete recovery.

Simoncini stresses to bear in mind that there is no other way to cure cancer than with baking soda. This is what he says on his website:

At the moment, sodium bicarbonate (in a solution of 5% or 8.4%) is the only remedy capable of making the tumours disappear completely. In order to get the maximum of damaging effect, the sodium bicarbonate should be brought into direct contact with the tissue.

Of course there is the Quack Miranada Warning, the red flag which is so often overlooked by desparate patients:

[...] We make no claims concerning health & disease in relation to usage of this book. The information we provide is for educational purposes only and is not intended as medical advice. Users assume all responsibility for the application of the content on themselves. The information and products which on this website are reproduced are not mend to replace and/or to ignore the advice of a practicing physician.

In an interview with Emma Holister he says:

“I have treated hundreds of patients. Most of them had extremely advanced cancer, especially after having been subjected to conventional therapies. Many of them made a complete recovery and are still alive and well years after the treatment.

In the cases of cancers caught early (lumps smaller than 3cm, with minimal incidence of metastasis) 90% of patients have made a recovery.”

Maussan asks Simoncini whether he has any doubts as to the efficacy of sodium bicarbonate against cancer and he says no, none whatsoever.

Simoncini’s miracle cure: Terminal cancer? Or just a benign cyst?

During the interview a video is shown of a miraculous breast cancer cure. In the video we see a woman, Amelia Parra,  telling us of her breast cancer of gargantuan proportions. We are shown the breast with the giant tumour (the “tumour” appears at 1:57 and again at 2:13 in the video) – which to me looks more like a cyst than cancer. You can click here for photos of untreated breast cancer.

I asked jli if he thought it could perhaps be a cyst and this is what he said: “…I agree. A big tumour that suddenly appears during breast feeding, and grows fast is the way a cyst would appear, and not the way a cancer behaves. And of course no genuine oncologist would behave as claimed…”

Anyway, when Amelia went to see a doctor, he immediately told her that she was done for. She went for a second opinion and received the same answer there. Very empathic, these mexican doctors.

Desperate, she turned to Jaime Maussan. Stands to reason of course; what else can a cancer patient do but consult a seer of aliens and UFOs? Mr Maussan in his infinite goodness referred her to Simoncini, who cured within a few days. When she is back in Mexico she has a scan done and there is no trace of cancer to be found. Wonderful, isn’t it?

Translation of the video:

While I was breast feeding, I discovered a ball in my left breast. The oncologist immediately prescribed chemotherapy and radiation (no mention is made of further exams or biopsy, which is extremely unusual – unbelievable actually). The tumour was too big to be operated. He doubted whether strong doses were possible because I was breast feeding. Hormonal therapy would also be too dangerous. 

Then they examined me and found this other ball, in the same breast but a little higher. We went to mexico city to do a pet scan and we went to see the oncologist. The doctor does a new analysis (doesn’t say what exams are performed, just “analysis”) and then he looks at me and says: Amelia, you are going to die. He said the same thing, he described chemo and radiation, said he could not operate at once. I would lose my hair which was horror to me. I would also become menopausal at once. A terrifying prospect.

It was then that I decided I would not follow that road. If I had to leave this world then it would be with dignity and joy, surrounded by my loved ones, doing what I loved doing best. I did not want to enter eternity through a hospital corridor.

But the lump kept growing, it was like a bomb, so very very fast it was growing! It was horrible, it even took up skin of my back. There was one starting to come out on the other breast and in the neck as well. I felt that I was beginning to die. I went to another oncologist, but when he saw me he said: but that is horrible, I can’t operate on that, the skin is coming apart.

Then a friend of mine called Jaime Maussan, who told me: you must try Simoncini, I have just finished his book. I could not sleep, I imagined a miracle, bought airplane tickets in the morning and in three days I was with Simoncini. He visited me, he said: this can be removed, I’ll see you tomorrow. 

Later we went with Simoncini to talk to my oncologist, who said: you stay out, I do not know yet, but after 5 minutes Simoncini had convinced him. He explained how the treatment worked and already they were discussing how to do the operation! The next day I did not go home but went straight to the hospital where I would spend the night before the operation. The operation seems to have been quite a thing. While I was under sedation, I was opened up, and washed with over 8 litres of sodium bicarbonate. Then they left catheters in strategic places, so that all residues of fungi in the area could be killed, in the breast, in the back and in the other breast. The operation was an immediate success. The terrible stain, of which they had told me in December that they would not be able to close the skin, was practically gone within a week. The wound had healed perfectly. It looks just perfect.

“And do you still have cancer?” We did tests. It has now been about 5 months. After 3 months we did the first scan. There was absolutely no cancer to be seen. A week ago I had a test done in Mexico City, the one you get to wear headphones and they scan all your organs, and it was perfect, there was absolutely no cancer. I am completely cured. My eternal gratitude goes out to Simoncini.

There are no documents shown to prove Amelia Parra really had cancer, no diagnosis, no biopsy result, no pathology report; nothing. We don’t even know if the woman with the tumour and Amelia Parra are the same person. We only have the word of the woman telling the story.

But desperate people are desperate to believe. The video makes a great impression and brings Simoncini a lot of new customers.

His mantra that he is ousted by the scientific community because they hate innovative science is so lame and annoying: innovative scientists are the life blood of the scientific community, they are not ousted but awarded Nobel prizes. We don’t believe Simoncini does not know that this video means nothing. He is not stupid; he is looking for customers.

Thus is his contempt for his patients that he does not even bother to render his testimonials the least bit credibility. It is no more than advertising, and of the most despicable kind at that.

Many people seem to have a distorted and incorrect definition of the word “<b>remission</b>,” as it is used in relation to <b> cancer</b> patients.  Most commonly people seem to believe that going into <b> remission</b> means that the patient is successfully treated and safe.<br>
However, according to the American Cancer Society,<b> cancer remission</b> is a “period of time when the cancer is responding to treatment or is under control.  In a complete <b> cancer remission</b>, all the signs and symptoms of the disease disappear…Complete cancer remissions may continue for several years and be considered cures.”<br>
So, someone who goes<b> into cancer remission</b> is not showing signs or symptoms of the cancer.  It doesn’t matter how many cancer cells are still going strong and growing in the body of the patient, for any time frame that it isn’t causing “signs and symptoms,” the patient is said to be in remission.<br>
Oddly enough, there isn’t much discussion in the advertisements for traditional cancer treatments regarding the extension in the length of life for the patient.  And there aren’t many discussions about the quality of life for the patient.<br>
These two concepts are not factored in when talking about “<b>cancer
remission</b>” in a patient.Typically speaking, cancer remission refers to shrinkage in the size of a tumor or to the change in some of the tumor markers.  Tumor markers are substances, usually proteins, which are produced by the body in response to cancerous growth or tissues.  However, a lot of the markers are also found in non-cancerous conditions so they aren’t really a good diagnostic tool for cancer.<br>
Traditional cancer therapies are successful in shrinking tumors and reducing tumor markers.  For this reason, cancer remission is used as the indication of “successful” cancer treatment.<br>
<b>Cancer remission</b> doesn’t necessarily mean the patient doesn’t die.  For example, a patient is said to have been successfully treated for cancer if the therapies put them into remission, even if they die from pneumonia.  Despite the fact that the pneumonia was only fatal because of the cancer therapies, because cancer remission existed, it was successful treatment.<br>
To most people, no treatment that still results in death should be considered successful.  However, when it comes to <b> cancer remission</b>, that’s exactly what can happen when they pursue only traditional cancer treatment options.

Yesterday was a day of loads of appointments and last minute scans. I’m not going to lie: I was extremely pissed off, and for many good reasons.

First, all of it was last minute. As in, we got all the calls the day before (Wednesday) at the last minute. It was especially sad for me because someone I’d been friends with in high school passed away, and since I missed the funeral service, I wanted to go to his paddle out at the Huntington Beach Pier at 10:30am. Initially, I was going to go to the Quest office near my house for my labs at 9:00am, make the paddle out at 10:30am, go to my next doctor appointment at 1:00pm and then have the rest of the day to do whatever I wanted. Then the offices called (both the doctor and the Imaging Center) and change my appointment to 10:30am, and set up 2 different times that day for both my CT scan and my PET scan.

Ok so now you’re telling me at the last minute that 1) I have to miss this service (which meant a lot for me to go to not only because he was such a great person, but with all I’m going through I know very well how short life is, and what happened to him feels so unfair) and 2) I now get to fast (as in NO FOOD) until about 3:00-3:30pm the following afternoon (and mind you, it was only around 4:00pm or so when the last calls came). Wow, thank you. I mean, I am trying super hard to be cool with everything I need to go through and I understand how vitally important these scans are. However I am so sick of the interference and inconvenience this has been on my life. It’s absolutely ridiculous to me, and I just wish it would end already.

On the upside, I probably do not have anymore scans for another 2-3 months or so. Which means the only worries of food I will have until then is holding it down and not having to stay away from it. As soon as I have the results of my scans, I’ll post them. Last time, the scan results were that the tumor had shrunk from 16 inches to 6 inches, as well as the cancer that had spread to my liver and lungs was no longer there. I can only imagine how after 3 months of treatment then, I made that much progress, to what it will be at now. Perhaps the tumor is 1-3 inches, or gone altogether!! That would be fabulous!!

On a last minute note, I was scheduled to go back in for chemo on Monday. Well as it turns out, my labs yesterday were bad, and I need a unit of blood today. For the schedule, I was actually going to be in the hospital for Thanksgiving. Now because of my labs, even with this unit of blood, I will most likely not be able to be admitted to the hospital for treatment. Most of the doctors and staff that work this out have the rest of the week off for Thanksgiving, so there’s a chance now that I will be able to spend Thanksgiving at home. I’m super psyched about this, but again it will be based on Monday’s lab results and how the medical team’s schedules work out. Unfortunately this may now put me in for Christmas, but hopefully something can work out for that as well. Exciting news out of an inconvenient day!!

Sleeping in. Someone else roasting the turkey. Modern pharmaceuticals. Muscle tone. Indian summer. Indoor plumbing. Unconditional love. Friends. Good friends. Friends who sit with you during chemo. Friends who send cards. Friends who send gifts. Friends who send couture. Shiraz.

Dogs. Cats. Saturday morning pancakes. Cashmere. Down comforters. October. May. The blindness of true love. Coldplay. Homemade pizza. Having enough energy to cook really good food. Christmas. The way my kids smell. Yoga. Naps. Clothes hot from the dryer. Parking in the garage. A clean house. Date night. Toddler giggles. The Bristol Lounge. A capella boys’ choirs. The internet. Diet Coke. Jude Law.

Second chances. Third chances. Seventh chances. Tireless medical researchers. A sense of humor. A great-shaped skull. Discount retailers. Shoe shopping. Walking in the woods. Every day. Netflix. Hot showers. Maho Bay. French fries. Really good wigs. Sunbathing. A good book. Or six. Freshly painted toenails. Comfortable high heels. Hugs.

Family. Family. Family. Family. Family. Gumption. Self-confidence. A good cry. Qualified therapists. A sympathetic ear. Backup. Permission to fail. Not wanting to.

Tomorrow.

This poem haunts me, maybe haunt is not the right word, one phrase in particular sticks in my mind;

I never thought that life could get this small

It is from a poem called “Chemotherapy” by Julia Darling. It ends saying

I’m not unhappy. I have learnt to drift

and sip. The smallest things are gifts.

You can read more about her work in this article in the Guardian.

http://www.guardian.co.uk/books/2004/aug/05/health.poetry

I like the description

My joints are like rusty cranes

My spine is frozen

So after a long, long wait chemo number 4 is finally arriving! It’s been so long since I last had treatment that my hair has started to grow back and I now have a shaved head, rather than a bald one. I was never brave to go outside bald, but I shaved off my hair before chemo and loved it. So I am going to be leaving the wigs at home sometimes now (although hair may go again after next chemo). Look!

Hair has really grown back since last chemo!

Ok. I am officially obsessed with hair. Have you noticed? You’d think given what is going on I’d focus on the “more-important-things”. Pssst. I think that it is because I cannot see the side effects of chemo on the inside, the way the drugs are stopping the rapidly reproducing cells to stop doing so.  But I can see the effects that chemo is having on my exterior, on my outer shell. And that involves mainly hair, or lack of. I have been very lucky so far and have not had the nasty side effects that chemo can have on you: mouth ulcers so painful you cannot eat. Extremely sensitive gums. Changes in your taste buds (either by messing up your sense of taste or by stopping you from tasting anything). Metallic taste in your mouth. So really the only thing to talk about is hair. Because really you don’t wanna know about the tiny mouth ulcers i had on my tongue a couple of times. Or how for a few days my gums did feel sensitive. Or the uncomfortable heart burn I suffered for a week after each chemo. None of them were drastic enough to talk about.

What was pretty drastic was my last chemo session, number 3 and thus the one that took me to being right in the middle of my treatment. I had it on a monday and it wasn’t until the saturday that I left my bed. On that occasion I managed a 10 min round trip to the supermarket to pick up the guardian and some croissants. Then back to bed. The following day was slightly better. A trip to the local park with nick, which saw me in tears half way through, thinking I would not make it. But I did. We sat on a bench. It was one of those beautiful autumn days, when the sun is shining, the sky is clear blue and the air is fresh and crisp. The week after was, to my surprise, a recovery one too. But this time instead of bed I was on my sofa. Just feeling weak. Feeling down. Feeling hard done by. Feeling that life is just not fair and why-has-this-happened-to-me? just not fair.

And then the time for chemo number 4 came along. So I had my blood test and, voila! my white blood cells were low again. And again and again on the next 2 blood test. Hence the delay. I’t been over a month since I last did chemo. When your white cell count is very low your immune system is weak (or non-existent at times). They cannot give you chemo until your white cells are up again, so they can knock them down once more. But finally the time is arriving and I have to admit I am  scared!

Why am I scared, you may wonder? I should be an “expert” by now. Well, well. They are changing my chemo drugs, from FEC to taxotere (docetaxel). And the potential side effects do not look pretty. I do not know how will I react to this treatment. … So it is, once again, back to the unknown. Here is the “official list” of side effects:

• Drop In Number Of White and Red Blood Cells
• Allergic Reactions To Chemotherapy Treatment
• Fluid Retention
• Diarrhea
• Nausea/Vomiting
• Chemotherapy Hair Loss
• Chemotherapy Fatigue
• Muscle Pain and Bone Pain
• Rash
• Nail Changes
• Eye Changes
• Odd Sensations
• Infection
• Mouth and Throat Irritation
• Infusion Site Reaction

So lets see. Nail changes. I have read (in bc forums) people saying that their nails fell off. Apparently to avoid that happening a good trick is to paint them with a dark shade of nail varnish. So I’ll be going for the goth look this week. The bone and muscle pain is also one that people seem to complain about quite a lot. I met a 32-year-old bc patient on my last chemo visit that was doing taxotere and she was telling me how much pain she was going through. And how painkillers only worked for an hour or so, then it was back to being in pain again. And how last time she was having her taxotere infusion (that’s what is called when they administer the drugs, infusion) she had to ask the nurses to stop as her spine started to really hurt. Which takes is to the last side effect “Infusion Site Reaction”. There is a risk that you’ll have an allergic reaction to this chemo drug so when you first have it they have to give it to you very slowly, just in case you have an infusion-site-reaction. God. It sounds really toxic. Oh, and have you noticed the “odd sensations” one? Vague or what? However I have also read other women who have reacted well, so there is hope. But, when they are going to give you a drug that comes with this warning

Some Taxotere^® chemotherapy side effects may be dangerous and even life-threatening, such as serious infections, allergic reactions and fluid retention. It is important to report ALL side effects to your doctor or nurse.

I think it’s normal to be scared. If only a little.

yesterday (11/20) I went for chemo #6 in the first cycle which is taxol for me. My Mother, doctor and I sat and discussed my progress & future treatment. And discussed the fact that the previous week had been the 1st bad week thus far.
The general aches & pains.. the incessant itching, burning, dry, tight feeling in my head etc.. not much to say, take tylenol or aleve and try to make yourself as comfortable as possible he says. Gave me some samples of Aquafore to try on my head. Hoping that will relieve some of the discomfort but not sure.
Throughout the week I had called into the office because I was so miserable. The we dont know what to tell yous and the oh try tylenol crap really had me ready to yell “what am I paying you ppl for?” but ofcourse I didnt. Im in such a highly emotional state I just cried and said “ok”.
He was very happy with the rate of shrinkage to tumors. This week my bloodcount was down just a little bit but not enough to cause alarm & I gained a pound.
The actual chemo treatment went well, no mishaps or loss of breathe or anything. Its strange to say but after such an uncomfortable week I was almost looking forward to treatment. Because I know it is calm quiet time for me. I have no choice but to stop moving and doing and just sit. Being that my mother walks by my side through this journey it has become a time for us to just talk about whatever, and in the end it makes me SLEEP which was much needed after not really being able to sleep comfortably all week. And not to mention working 10 hour days M-Th to make up for the hours I lose on Fridays mixed with the hieghtened emotions.. ugh, i have been a mess lately.
Im praying for a better week this week, more like the previous where the dopiness had worn off in 2 days and I was back at work on Monday with nothing to complain about but the constant taste of paper in my mouth.
I am intending on sending my efforts to promoting a fundraiser being given for me by my church family next month so please stay tuned & show some love for that. If you would like to participate or donate in anyway please click the To Donate page OR contact Dr. Armstong @ 518-505-4500 or apostle.viv@aol.com

Thank you all for continuing to support me & pray for me.