Material things

I've been doing a lot of thinking lately and I feel like my stuff is smothering me. I'm ok to get rid of things, I have a couple of bags of stuff ready for the thrift. I want to get my closet back. Right now it holds shoes I probably won't wear; books I've read; and boxes of memories. 

I know it will be futile to go through those boxes (like the Old Milwaukee Light box) because I already know I won't be able to get rid of anything in there. I can get rid of shoes and books but there is a pink bird house type thing in that box (I can see it thru the opening) that contains fuzzy chickens from past Easters and other memories of a time when I was so innocent. On the other side of the shelf are paintings my grandmother made. And a large coloring book that helped me learn about Colonial women like Molly Pitcher. Maybe it's ok to save these memory triggers??

Cancer sucks

I'm becoming angrier at cancer. Not because I have it but because people I love have it. I'm about to lose another aunt to it. She was in remission but it came back fast. I want to punch it in the face. I want to punch something! All of the millions of dollars supposedly spend on cancer research and they can't come up with a cure???
Anyone who doesn't have cancer is so very lucky. I may seem like I whine and complain a lot but I know I am fortunate to be feeling good right now.

Need a superhero name

It's just something I was thinking about today. What would you call someone who goes around helping old men who have fallen and old women who don't know how to use the self checkouts at the store? ;-)

PS appointment/onco appointment/Faslodex horror

On the 22nd I saw my plastic surgeon. She's reluctant to go forward with lat flap surgery because of the recurrence. Very disappointing! She said she's concerned about my health and wants me to heal from the last surgery. She said if she gets OK from my oncologist and breast surgeon she'll do it. I see her again in 3 months.
Same day at oncologist: waiting for appointment when a woman came up and informed me that I can apply for a grant too cover the Faslodex. She showed me that it costs over $3000 per dose and my cost would be almost $400 per dose. I've had 3 loading doses and now I'll be on a once a month schedule. Whew! Had a meltdown over that! Now I'm waiting to hear if I qualify for the grant. There's no fear like the fear of not being able to pay for a drug that could potentially save your life.
Oncologist never has answers to my questions. He said it's OK for me to go ahead with reconstruction if that's what I want.
I'm very happy that my WBC, hemoglobin, and platelets are in normal range! Red blood cells are still slightly low.

Merry Christmas!

Had a good Christmas with the family. Happy today and feeling good!
Last night heard/felt my neighbor hit the corner of his garage with the bumper of his car. After trying to figure out what the noise was I noticed the light still on in his garage. I checked and he had fallen and was trying to pull himself up using the tailgate. I'm so glad I heard it and he didn't lay there all night. He's in his 70s and is having a difficult time since this is the first Christmas without his partner of 50 years.

Seroma seroma

Last week I had 120mls (~40oz.) drained from the seroma that developed at my surgical site. Then it developed again so I went back in and I now have another drain. I'm not quite convinced the PA really knew what she was doing since she didn't put a dressing over the drain tube site. Sutured it in and that was it. Wouldn't be so concerned if I hadn't had to go thru FOUR MONTHS OF ANTIBIOTICS for an infection!

Speaking of removing my own drain...

This is an interesting story!!

http://www.badassoftheweek.com/rogozov.html

of the Week.

Leonid Rogozov "I did not sleep at all last night.  It hurts like the devil!  A snowstorm whipping through my soul, wailing like a hundred jackals.  Still no obvious symptoms that perforation is imminent, but an oppressive feeling of foreboding hangs over me... This is it... I have to think through the only possible way out:  to operate on myself... It’s almost impossible... but I can’t just fold my arms and give up." Self-surgery is one of the most hardcore things a human being can attempt.  Throughout history there are several ultra-bonkers cases of hardcore, moderately-insane individuals going under their own knife-wielding hands – a couple years ago this woman in rural Mexico gave herself a c-section with a kitchen knife while using hard liquor as an anesthesia.  In 1999, a woman named Jerri Nielsen biopsied her own breast cancer while ice-bound in Antarctica, with her only access to medical professionals being through videoconferencing equipment.  This group of psychotic hippie nutjobs used to get blitzed on LSD in the 60s and drill holes in their heads with power tools as a path to spiritual enlightenment, and this Italian neurosurgeon once finished a brain operation while suffering from a heart attack – which isn't exactly self-surgery, but still needs to be included among any list of hardcore surgical operations. Despite all of these incredibly gonzo attempts at curing disease by taking a scalpel to your own abdomen, by far the most often-requested self-surgery incident I receive emails for is the super-intense case of Leonid Rogozov – the twenty-seven year old Soviet surgeon who, in 1961, removed his own appendix in the middle of an Antarctic hellhole surrounded by a bunch of guys whose only experience with medicine was when their physicians told them to turn their heads and cough.  Since I generally like to do fan service any time it doesn't compromise my own principles of badassitude, I will now attempt to humbly present the first documented case of a successful auto-operation of this caliber performed under these impossible working conditions. Antarctica is fucking cold.  I'm not sure if you know this or not, but it's true.  I wouldn't bullshit you on this.  Why the hell you would ever want to go there is something I may possibly never understand, but that doesn't mean that I can't have a healthy respect for those psychopathic adventurers who get out there and explored the uncharted glacier-covered wastelands of nothingness – it takes serious nuts to get out there and survive in the world's harshest climates with only penguins and bloodthirsty Orcas to keep you company, and that's something that Leonid Rogozov had plenty of. Rogozov was in the midst of a pretty promising career as a surgeon, and had just finished working on a dissertation aimed at designing a new method for operating on esophageal cancer, but a few weeks before he was supposed to get in front of the board and defend his dissertation he decided, "fuck it, I'm going to peace out of here, join the sixth Soviet Antarctic expedition, and drive giant tractors around in wind chills of negative one hundred and forty degrees Fahrenheit."  So he did.  He ditched school, joined the South Pole expedition, and was one of just twelve men who departed Leningrad in 1960 to set up a polar base in the middle of fucking ass-nowhere.  Doing triple-duty as the expedition's doctor, assistant meteorologist, and heavy-vehicle operator, Rogozov spent thirty-six days at sea, withstood hella-bitter Antarctic temperatures so nut-bustingly cold that it would turn most guys' dicks into those liquid nitrogen bananas scientists like to use to hammer nails into boards, and helped build the Russian base at Novolazraveskaya Station. It's tough to look like a badass when you're chillin' with penguins. Here's a satellite image of Novolazarevskaya Station.  The astute cartographer will notice that there is absolutely goddamned nothing around this consonant-heavy installation except for glacial snow, freezing cold water, and unbearable soul-crushing misery.  It's a brutal climate designed by the gods to crush the life out of the weaker species of earth, and this dude was out there in the middle of nowhere just jumping snowmobiles through flaming hoops and stitching up workers who busted their arms falling off construction towers.  Well this was great fun and all, until the night of 29 April 1961, when Rogozov started barfing all over the place, ran a temperature, and started having searing pain coursing through his abdomen.  Rogozov, being a surgeon, of course managed to diagnose himself with acute appendicitis.  That was the easy part.  The hard part was that intense winds, freezing temperatures, and the afore-mentioned misery of the Antarctic cold season prevented him having any hope of evacuation, and he was stuck in a recently-constructed work facility with no hospital equipment, no medical personnel, and an agonizingly-painful infected internal organ that was going to kill him if he didn't get it removed in the next twenty-four hours. Uh, fuck. While most people would have simply died slow, excruciating deaths like chumps, Leonid Rogozov decided that he was going to will himself to live.  With all the odds stacked against him, this guy decided he was going to get in there and yank the damn thing out himself – no matter how ridiculous a prospect that may have been.  Sure, appendectomies are some of the easiest surgical procedures you can perform, but it's significantly less simple when you're in a makeshift operating room, working blind and upside-down while running a fever and suffering from extreme nausea, and being assisted by a bunch of uneducated manual laborers.  Rogozov didn't give a shit.  He ordered his men to get the medical room as sterile as possible, and then, assisted by a weatherman, a mechanic, and the base manager (who was there as back-up just in case either of the other two assistants got nauseous and passed out – never mind the fact that Rogozov was out there on his own), Rogozov laid down on the operating table, took his favorite scalpel, and sliced a five-inch incision across his own lower abdomen. For the next hour and forty-five minutes, the super-sick, dying Leonid Rogozov operated on his own badly-infected appendix.  Unable to see down into his own gaping wound, Rogozov had to work by feel alone, without gloves, and sometimes using just a mirror that was being held above him by one of his assistants (Rogozov later said that this was less helpful than you might think, because everything in the mirror is backwards and it was really screwing with him).  Suffering badly from stress and illness and overall suckitude, Rogozov had to take breaks every five or ten minutes to vomit, collect his energy, or wait for the room to stop spinning, but this guy was so insanely badass that he just kept plowing through the procedure, doing whatever he needed to do to survive. Now my first-hand experience with surgical procedures is minimal at best (you'd have a better chance of explaining to me how fuckin' magnets work), so the closest thing I can equate this to would be tattooing yourself by writing in cursive, upside-down, with your eyes closed while dying of malaria.  And if you spelled something wrong you died in a matter of seconds.  So, like, no pressure or anything. "I didn’t permit myself to think about anything other than the task at hand. It was necessary to steel myself, steel myself firmly and grit my teeth." Somehow, despite every single possible factor stacked up against him, Rogozov yanked the misbehaving organ out of his exposed breadbox.  Just before he passed out, he remembered specifically noticing that the appendix was so badly infected that it would have ruptured within the next couple of hours, putting him in a situation he certainly would not have survived. Amazingly, two weeks after this crazy juryrigged operation Rogozov was back in action, working as the base doctor for the rest of the trip.  Dude didn't even get evacuated back home once the weather cleared up – he stayed in Antarctica for a full year, returned home with the rest of his team, finally defended his dissertation, received the Order of the Red Banner of Labor award from the Soviet government, and lived the rest of his life as a Professor of General Surgery in St. Petersburg.  Insane. "When Rogozov had made the incision and was manipulating his own innards as he removed the appendix, his intestine gurgled, which was highly unpleasant for us;  it made one want to turn away, flee, not look—but I kept my head and stayed.  Artemev and Teplinsky also held their places, although it later turned out they had both gone quite dizzy and were close to fainting... Rogozov himself was calm and focused on his work, but sweat was running down his face and he frequently asked Teplinsky to wipe his forehead... The operation ended at 4 am local time.  By the end, Rogozov was very pale and obviously tired, but he finished everything off."  Links: BMJ Case Report English Russia Wikipedia Sources: Rubin, Jeff.  Antarctica.  Lonely Planet, 2005. Wise, Jeff.  Extreme Fear  Macmillan, 2009. Main The Complete List About the Author Miscellaneous Articles RSS

Short drain

I was allowed to remove this drain myself. She used absorbable sutures and taped it in well. It actually fell out as I was attempting to replace the tegaderm dressing. Oops. I did have to cut a suture that was poking me after the drain came out. Awkward holding a mirror to my side to see where I was going with the suture scissor. ;-)

Path report

Surgeon called last Thurs with my pathology results. She said she removed a 5mm area that was cancerous. Didn't get clean margins because that's hard to do in the armpit area. She also removed 2 lymph nodes that weren't cancerous. So I think I have 0 lymph nodes in that area now.

I have questions for her during the follow up appt. Did that cancer just "pop" up in that area or did it start in a lymph node that was previously removed?

My right arm has blown up with lymphedema. That's a frustrating disappointment.

I've been playing phone tag with someone from the oncology financial office. I'm worried my Medicare/Medicaid won't cover the new injectable drug (Faslodex) because I've heard it's expensive. I'll be in a panic until I talk to her.

Incision and drain site incision

Get that friend of yours who knows a guy to make me some "special brownies."

http://www.purpleclover.com/health/5623-how-deal-me-having-breast-cancer/

Downregulator

I love that word! It would be a cool band name! Anyway, my new drug is an estrogen receptor downregulator or ERD. It's given to postmenopausal women with metastatic breast cancer when the cancer has progressed after other drugs stop working (my Anastrozole).

Faslodex

Generic name: Fulvestrant

Chemocare.com uses generic names in all descriptions of drugs. Faslodex is the trade name for Fulvestrant. In some cases, health care professionals may use the trade name Faslodex when referring to the generic drug name Fulvestrant.

Drug type:  Faslodex is a hormone therapy.  It fights cancer as an "estrogen receptor downregulator."  (For more detail see "How this drug works," below).

What this drug is used for:

To treat estrogen receptor positive metastatic breast cancer (cancer that has spread) in postmenopausal women, with disease progression following antiestrogen therapy.

Note:  If a drug has been approved for one use, physicians may elect to use this same drug for other problems if they believe it may be helpful.

How this drug is given:

As an injection into the muscle (intramuscular, IM).Fulvestrant is usually given as a once a month injection.  Your doctor will determine any variations to this dosing or schedule.

Side effects: 
Important things to remember about the side effects of fulvestrant:

Most people do not experience all of the side effects listed.Side effects are often predictable in terms of their onset and duration. Side effects are almost always reversible and will go away after treatment is complete.There are many options to help minimize or prevent side effects.There is no relationship between the presence or severity of side effects and the effectiveness of the medication.

The following side effects are common (occurring in greater than 30%) for patients taking fulvestrant:

None occurring greater than 30%

These side effects are less common side effects (occurring in about 10-29%) of patients receiving fulvestrant:

Nausea and vomiting  Weakness Hot flashes (see sexuality)Sore throat (pharyngitis, see cold symptoms)Headache Bone pain Constipation Diarrhea Abdominal pain Injection site reaction with mild temporary pain and swelling at the site.Cough 

Other:

Vaginal bleeding reported infrequently (less than 1%), mainly in patients during the first 6 weeks after changing from existing hormonal therapy to treatment with fulvestrant.  If bleeding persists contact your health care provider.A rare (less than 1%), but serious side effect of fulvestrant is blood clots, including deep vein thrombosis (DVT) and pulmonary embolus. You should seek emergency help and notify your health care provider immediately if you develop sudden chest pain and shortness of breath.  Notify your health care provider within 24 hours if you notice that one leg is swollen, red, painful and/or warm to touch and the other is not.

Not all side effects are listed above. Some that are rare (occurring in less than 10% of patients) are not listed here.  However, you should always inform your health care provider if you experience any unusual symptoms.

When to contact your doctor or health care provider:

Contact your health care provider immediately, day or night, if you should experience any of the following symptoms:

Sudden shortness of breath and/or chest pain

The following symptoms require medical attention, but are not an emergency.  Contact your health care provider within 24 hours of noticing any of the following:

Swelling, redness and/or pain in one leg or arm and not the otherExcessive vaginal discharge or bleeding, menstrual (period) pain or irregularitiesNausea (interferes with ability to eat and unrelieved with prescribed medication)Diarrhea (4-6 episodes in a 24-hour period)Constipation unrelieved by laxative use

Always inform your health care provider if you experience any unusual symptoms.

Precautions: 

Before starting fulvestrant treatment, make sure you tell your doctor about any other medications you are taking (including prescription, over-the-counter, vitamins, herbal remedies, etc.).   Do not take aspirin, or products containing aspirin unless your doctor specifically permits this.Let your health care professional know if you have ever had a blood clot that required medical treatment.Inform your health care professional if you are pregnant or may be pregnant prior to starting this treatment. Pregnancy category D (fulvestrant may be hazardous to the fetus.  Women who are pregnant or become pregnant must be advised of the potential hazard to the fetus).For both men and women: Do not conceive a child (get pregnant) while taking fulvestrant. Barrier methods of contraception, such as condoms, are recommended. Discuss with your doctor when you may safely become pregnant or conceive a child after therapy.Do not breast feed while taking this medication.

Self-care tips:

If you are experiencing hot flashes, wearing light clothing, staying in a cool environment, and putting cool cloths on your head may reduce symptoms. Consult you health care provider if these worsen, or become intolerableThis medication causes little nausea.  But if you should experience nausea, take anti-nausea medications as prescribed by your doctor, and eat small frequent meals.  Sucking on lozenges and chewing gum may also help. Avoid sun exposure.  Wear SPF 15 (or higher) sunblock and protective clothing.In general, drinking alcoholic beverages should be kept to a minimum or avoided completely.  You should discuss this with your doctor.Get plenty of rest. Maintain good nutrition.If you experience symptoms or side effects, be sure to discuss them with your health care team.  They can prescribe medications and/or offer other suggestions that are effective in managing such problems.

Monitoring and testing: 

You will be checked regularly by your health care professional while you are taking fulvestrant, to monitor side effects and check your response to therapy.  Periodic blood work to monitor your complete blood count (CBC) as well as the function of other organs (such as your kidneys and liver) will also be ordered by your doctor.   

How this drug works:

Hormones are chemical substances that are produced by glands in the body, which enter the bloodstream and cause effects in other tissues.  For example, the hormone testosterone made in the testicles and is responsible for male characteristics such as deepening voice and increased body hair.  The use of hormone therapy to treat cancer is based on the observation that receptors for specific hormones that are needed for cell growth are on the surface of some tumor cells.  Hormone therapies work by stopping the production of a certain hormone, blocking hormone receptors, or substituting chemically similar agents for the active hormone, which cannot be used by the tumor cell.  The different types of hormone therapies are categorized by their function and/or the type of hormone that is affected.

Many breast cancers have estrogen receptors, and the growth of these tumors can be stimulated by estrogen. Fulvestrant is an estrogen receptor downregulator, this means it binds to the estrogen receptor site in competition with estrogen in the body.  Once it binds to the site it causes the receptors to break down, thereby preventing normal cellular response to estrogen.
 

http://chemocare.com/chemotherapy/drug-info/faslodex.aspx

Surgery today (11/25/15)

It went well today. Lots of anti nausea drugs and voila! No nausea!
They used ultrasound to place a radioactive "seed":

This information explains your breast seed localization procedure at Memorial Sloan Kettering (MSK).

Breast seed localization is a procedure in which a tiny metal seed, about the size of a small sesame seed, is placed into abnormal breast tissue. The implanted seed contains a small amount of radiation. This helps your surgeon find the area of abnormal tissue during surgery when it is too small to be seen or felt by hand. The seed will stay in your body until it is taken out during your surgery.

Then they started the IV and got me ready for surgery. The IV placed in my hand blew up on the way to the surgery suite and I had a lump of fluid on my wrist. They tried another vein in my hand and one on my inner forearm, no luck. They ended up using my port. Dr always asks what kind of music I want to listen to in surgery. My sis-in-law said 80s rock so that's what I got! Men Without Hats Safety Dance and Joan Jett I Love Rock n Roll. Sweet! Then...
Oxygen mask on, drugs in, off to lala land.

Incision is about 2 inches long and I have another JP drain. This drain I'm allowed to take out myself because Dr know it won't bother me to do so and its not very long.

No pain yet. Dr put a numbing blocker in there that is/was supposed to last for 8 hours.

More later...

Faslodex

Went to cancer center to get my first injection of the drug that will take the place of Anastrazole. More about Faslodex later. 

Went into a room in the "chemo area". I usually sit out with the rest of the patients when I go for a port flush. The nurse ordered the drugs from the pharmacy. There were 2 syringes of 250ml each. Nurse told me to bend the leg slightly on the side she was injecting. It goes in the muscle at hip level in the butt. One syringe on each side: 500mls total. The poke wasn't so bad but the stuff going in was painful. It has to be injected slowly and it hurts. Like a deep hurt. Like I felt woozy for a moment. Then the other side. Ugh! I get it again in 2 weeks then 2 weeks after that and then once a month. I'll be taking it as long as it keeps the cancer under control. I can deal with the injections as long as it works! I'm worried about insurance/Medicaid/Medicare covering the cost. 

And gotta have a funny one:

More radiation?

Team meeting 11/19/15

Met with breast surgeon, oncologist, and a couple of nurses or interns yesterday. Happy to hear it's only in that lymph node! Hasn't spread beyond that! Yay! I'm scheduled for surgery on 11/25 and start a new med on 11/24. The med is an  estrogen blocker like the anastrazole but hopefully will work better. The downside is that I'll get injections in my butt once a month with a loading dose every 2 weeks to start. Not too bad if it keeps the cancer at bay.

PET scan today

Typical PET scan today. Ate low carb diet yesterday. Went in got the radioactive glucose injection; waited a hour and a half; got scanned; went home. BUT the nurse who accessed my port forgot to disinfect the skin over the port. BIG NO NO! He came back in and said he'd call my doc to see if I needed a dose of antibiotics. Dr said to just keep an eye on it. Nurse said he felt like he was going to throw up. I felt badly for him.
Anything lurking on my skin had a direct line into my blood stream.

Thinking about joining the message boards on
breastcancer.org just to have someone to chat with when I'm worried or can't sleep. It helps to write in this blog but feedback is nice too.

Tomorrow I find out my results (hopefully) and will know what the plan is going to be.

Journal Entry Sept. 30, 2012

Good day. Very tired in afternoon.

Hair started to come out in shower in pm.

Journal Entry Sept. 29, 2012

Good day but got extremely tired in the afternoon. Went to Binder Park zoo & could hardly stay on my feet.
Good appetite.

Journal Entry Sept. 28, 2012

Good day! No issues other than I was pretty tired after driving all over & walking dogs.
Armpit/incision site isn't too painful. Chest isn't as itchy where port bandaid was.
No metallic taste.
No backache.
Not too much dry mouth.
No nausea.
Appetite good.

3 bumps on head now.

Journal Entry Sept. 27, 2012

(This sounds familiar! Ha ha!)

11:03pm
Rather painful procedure today. They did an ultrasound of my right armpit then the Dr. came in and did a sterile biopsy of the 2 largest lymph nodes. He used US to guide the biopsy punch and it was a spring-loaded thingy that felt like someone kicked me in the armpit. Sore tonight, 1/4 inch or so incision just to the right of my port.

Noticed 2 bumps on my head.

Good day except for hospital visit.

Stages

http://blog.thebreastcancersite.com/animated-stages-of-breast-cancer/?utm_source=bcs-weapr&utm_medium=social-fb&utm_term=111215&utm_content=link&utm_campaign=animated-stages-of-breast-cancer&origin=bcs_weapr_social_fb_link_animated-stages-of-breast-cancer_111215

Biopsy results

Had a voicemail from my breast surgeon's associate. I called her back and she told me the biopsy showed breast cancer in the lymph node. 

I'm scheduled for a brain MRI on Sun, a PET on Wed, and a team meeting to discuss treatment options on Thurs.

Scared and really bummed out.

"... and drank really dumb things like Zima."

LOVE HURTS

My heart was first broken 35 years ago and it happened again yesterday. Both times sucked the same.

• 
  

by Karen SommerfeldSunday, September 27, 2015

The first time I had my heart broken was in 1980. The last time was yesterday. I've been sitting here trying to decide if they feel any different. They kind of don't.

I was 15 when I finally succumbed to Jeff's charms. One night at the grocery store, my mom and I were in the meat section. Do you remember how they'd divide the kinds of meat, and inexplicably decorated those dividers with something that looked like plastic parsley?

It's so strange, the things you remember. I was staring at the plastic parsley when it hit me hard and heavy that I was in love with Jeff. I borrowed a dime from mom, rushed to the front of the store and called him from a pay phone. This whole story is kind of ironic because he grew up to be a vegetarian.

Anyway, we had three weeks of bliss, Jeff and I. For the first time, I felt that astonishing giddiness of what it's like to love someone, and I couldn't stop sighing with happiness.

Until he stopped calling me.

When I finally got up my nerve and called him, he said I was a flake and he didn't like me anymore. It took more than 30 years for it to finally dawn on me that he was the flake.

RELATED: Shacking Up at 49

Just as I'd been unprepared to feel as wonderful as I had, I had no idea how completely awful I could feel. Mornings were the worst. I'd wake up with the most crushing sense of doom. I couldn't eat, everything made me cry and I had no idea if I'd ever snap out of it. I both lived for and dreaded seeing him at school.

I'm sorry to tell you that there were also a lot of dramatic diary entries that started off with "Words can't express …" I was a regular Sylvia Plath back then.

And now here I am, 35 years later, and words can't express how awful I feel again, although you know I'm going to try. Long story short, heartbreak has no expiration date.

RELATED: Separately, Happily Together Ever After

I wasn't shopping for meat when I fell in love with Ned, but fall in love I did—ridiculously so. I found myself gazing at him when he spoke. At the movies, I'd lean in close so I could smell him for the whole two hours. I knew I'd love him till the day I died.

Four years later, I've realized it's not going to work out.

As we all know, there are lots of things that feel bad in this life. Biting the inside of your mouth. Finding out you made a really dumb mistake at work. But those things pale in comparison to when someone has become your sun and your stars and the crickets and all the sweet blooms that scent the night, and then you discover that, to them, you were as disposable as a paper plate.

That's how I felt when Jeff called me a flake in 1980, and that's how I feel now with Ned. It's the same sense of doom, the familiar crushing sadness that greets me every morning and I still worry that I'll never snap out of it. But at least this time I know what to do.

I know to sit still, and let the rotten wash over me, and after I've felt every last moment of the exquisite agony of missing someone I loved, I know I'll start to feel better again.

When I was 15, I tried beer and playing Queen as loud as I could and kissing other boys to escape the feeling of heartbreak, and nothing worked. So this time, I'll wait. Ned can't be replaced by a cute stranger or a shot of tequila. And I don't want him to be. The pain of losing him is the price I'm willing to pay for the joy of having known him. I know that these feelings won't kill me. But running away from them might.

Whenever I've run from my feelings in the past, I met the wrong people, ate horrible food and drank really dumb things like Zima. The worst hair mistakes I've ever made were all in the name of running away.

So, yes, 15-year-old self, it's true that this feels horrible and that it's hard to imagine ever smiling again. But you will. And you will, too, 50-year-old self. If you stay present and honor each stupid, awful feeling you have, you'll enjoy all the sweet blooms of the night again.

Biopsy and Primary care appt 11/11/15

Went in for biopsy at 9:15. It wasn't too bad. The lidocaine is the worst part. My skin in that area is numb so I didn't feel the needle but felt the lidocaine as he injected it. That always makes me want to punch someone. Ha ha! No, really!

Doc used the spring loaded biopsy punch but it was smaller than I've had before so it didn't hurt.

Results in 3-5 days. Waiting...

PC appt was just for a physical. Got a flu shot. 

My reading choices in the room:

Hilarious!

Appointment Nov. 5

I had an appointment with my breast surgeon on Wed. Just a survivorship follow up kind of thing. She asked if I had felt any new lumps. I only then remembered a lump I had felt below my right arm pit. I felt it there several months ago because I was having some pain in that area. She felt it and sent me for an ultrasound. US doctor said he wasn't sure what it was so I'm scheduled for a biopsy on Nov. 11. Hopefully it's just a normal lymph node. Not thrilled about the biopsy because those punch things they use to get the sample really hurt.

The gowns at the breast center actually fit!

Waiting for US.

My lovely view while waiting for results. Almost took a nap. Quiet in there.

10 Things...

10 Things I Wish I'd Known About Life After Cancer - http://huff.to/1MEz2Jp

Lab work

Went for labs today for my upcoming PC appt next week. Curious to see results since I just got over a cold. I'm back to feeling wiped out so I think the hemoglobin will be low. 

Hiked 5+ miles yesterday thru the woods (prickery vines, mud, swampy areas). Today I'm sore and exhausted. I hate that it takes days to recover from fun. 

Radiation burns

Yes, this is what it's like:

This Woman’s Tumblr Post Shows The Painful Side Of Breast Cancer Awareness

http://www.huffingtonpost.com/2015/10/27/this-womans-tumblr-post-shows-the-painful-side-of-breast-cancer-awareness_n_8401410.html

pushinginthepin:

Here’s your fucking breast cancer awareness. 

This was during my 35 day radiation treatment back in 2013. Breast cancer isn’t sexy. It’s not about saving the boobies. It’s not about no bra day, which is really just an excuse for women to post sexy pics of their nipples pressing through their clothes. It’s scars, nausea, pain, bald heads, burnt skin, and broken hearts.

If this doesn’t make you “aware” then I don’t know what will. 

Does it make you uncomfortable? It should. 

Cost of cancer

I have been very lucky. I will say that at first the fear of not being able to pay for chemo overrode the fear of the cancer itself.

https://www.dailyworth.com/posts/3932-how-much-does-it-cost-to-treat-breast-cancer

More things...

This is a portion of rainbow that I saw Sunday.

Journal Entry Sept. 26, 2012

Good day! A bit of a metallic taste in the mouth but otherwise no problems. 

Skin is still itchy. Go for ultrasound and biopsy of lymph node tomorrow. Sick of being poked.

Hand/arm still swollen/painful (arm).

This made me cry

http://m.jco.ascopubs.org/content/early/2015/08/06/JCO.2015.63.4105.short?cmpid=sk_journals_topdown_em_t_all_10-21-15_read&et_cid=36862718&et_rid=933013030&linkid=What+Do+You+Say+When+She+Is+No+Longer+Living+With+Cancer%253F

Laughter

I laughed at this one until my stomach hurt.

It's not poo???

Good charities

http://dailyburn.com/life/lifestyle/breast-cancer-charities-new-hope/?utm_source=SocialWarfare&utm_medium=facebook&utm_campaign=SocialWarfare

Sad

Wow! I hope this doesn't happen to me someday! I'm not married. I'm a loner. I suppose someone would realize that I hadn't texted in a while.

http://www.mlive.com/news/flint/index.ssf/2015/10/man_believed_to_be_dead_for_mo.html

So true!

Yahoo

HEALTH

HEALTH

10

23 Truths About Breast Cancer That Survivors Want You to Know

Jenna Birch

October 9, 2015

Each breast cancer patient’s experience is different, but there are some universal truths that seem to hold true. (Photo: iStock)

Since Susan G. Komen began handing out pink ribbons at a race in the fall of 1991 to benefit breast cancer survivors, the entire country knows what “pink” means. Every October, we see flyers for walks, armbands on football players, pins on T-shirts, drives to benefit new research — all in honor of a disease that’s highly recognizable, if not deeply familiar. 

Drive part-time, full-time, or anytime with Uber!

UberSponsored

But what do the nearly 3 million breast cancer survivors see each October — people who have actually walked the path and know what it means to go through the journey of diagnosis and treatment — when all of us only see symbols of a disease? We asked a dozen of them to tell us. From the emotional wear-and-tear to the facts they wish they’d been informed of earlier, here are 23 lessons they’ve learned along the way that we should all know.

1. A cancer diagnosis will bring people who care about you out of the woodwork.  

10 Best All-Wheel-Drive Vehicles Under $25,000

Kelley Blue Book®Sponsored

“My experience with breast cancer drew most people closer to me. I got to experience what few people do — find out just how many people care about you. It’s an amazing feeling,” says Erin Scheithe, a 35-year-old from Washington, D.C., who was diagnosed with stage 2 triple negative invasive breast cancer.

2. But a cancer diagnosis will also push some friends away — and that’s OK.  

“On the flip side, my diagnosis also pushed a few of my friends away, which upset me a lot at the beginning,” Scheithe says. “Cancer is scary, and everyone’s experience is so different. I wish others knew that those friends aren’t bad people, and it’s not personal. It’s just too much for them, and it’s OK. Others will step up, often some you didn’t expect, and that will blow you away.” 

3. Breast cancer is not ‘easy.’ There are no easy cancers. 

2015 Mortgage Rates Take Huge Dip - 2.97% APR

LendingTreeSponsored

“I was diagnosed at age 25, around two-and-a-half years after a sorority sister, who is the same age,” says 27-year-old Jacey Powers from New York, New York, who was diagnosed with stage 2 invasive ductal carcinoma. “Our diagnoses were almost identical. We both ‘caught it early.’ We both went through multiple rounds of chemotherapy, bi-lateral mastectomies, and had continued hormonal therapy. We both planned on never having cancer again — but last year, my friend had a recurrence of her cancer, with mets [metastases, or cancer spread] on two organs. What I learned in seeing her new diagnosis, so close to my own initial diagnosis, is that people don’t really understand cancer. There are no easy cancers, and every year more than 40,000 women in the U.S. are dying from breast cancer specifically.” 

4. Cancer is just part of a person’s story. 

Install Both ADT Pulse and Wireless Camera Free!

ADTSponsored

“While I was undergoing treatment, I constantly felt people were treating me like I was dying,” says Powers. “I want to be treated like me, not like my diagnosis; empathy is lovely, but pity is unnecessary. Whether cancer is a bump in the road, or ultimately the end of it, it’s just part of the story. Women, and men, going through breast cancer are not just patients. We are not victims. We are daughters, and mothers, and teachers, and doctors. People who stand in line with you at the grocery store, still get mad about stupid things like missing the subway, and want to talk about mundane stuff like the new season of Scandal.”

5. Breast cancer is not just a women’s disease. 

“I noticed a lump and ignored it. To me, it was more of an irritant, but my wife insisted I get it checked out,” says Leslie Wayne Mullins, a 56-year-old from Madison, Georgia, who was eventually diagnosed with breast cancer in 2011. “We researched and found that most men almost never get breast cancer, that it was more likely a cyst. I wish that I’d not listened so much to what I was reading on the Internet.” 

Leslie Mullins with his son.(Photo courtesy of Leslie Mullins)

“I was originally diagnosed with breast cancer in 2011,” Mullins continues. “At that point, doctors said it was stage 2, but when I underwent surgery for the mastectomy, they found that it was actually at stage 3, possibly stage 4. In late 2012, almost two years from my original diagnosis, I started feeling some pain and discomfort in my hip. At first, doctors thought it was a sciatic nerve issue, but that I should undergo a biopsy just to rule out any other possibilities. During the biopsy, it was discovered that the cancer had progressed to my bones, which is stage 4.” 

6. A treatment plan that is more than just short-term pain management can change your outlook on a diagnosis. 

“At that time, my doctors told me that they would mostly just be able to manage the cancer and gave me a few years to live,” Mullins says. “My wife and I wanted to do something proactive, and my pastor recommended Cancer Treatment Centers of America, so we sought out a second opinion from them. Integrated coordinated care was a real difference maker for me. I lost weight, felt better, started to exercise, wanted to get out more and walk around, and I overall just felt more motivated. I think that if you start feeling better overall, your body reacts. Doing things that focus on nutrition and exercise, that just make you feel good, helped with my experience. It was important that I found something that wasn’t just a short-term treatment plan, it needed to be a whole lifestyle change.”

7. A cancer diagnosis can you put you into ‘warrior mode.’ 

“I was 33 years old and had just had a baby, who was seven months old. My mother had recently passed away from breast cancer. And something inside me told me to get genetic testing done before I had another child,” says Brianna Meade, a 35-year-old from Chicago, Illinois. “I found out I had the BRCA-2 mutation. I went to my doctor. I was breastfeeding at the time, and she felt what I thought was a clogged duct — but this lump was hard, and it didn’t go away, I couldn’t massage it out. I got a biopsy done right away, and found out it was stage-2 breast cancer.”

Brianna Meade with her family.(Photo courtesy of Brianna Meade)

“Some break down, but I was in warrior mode. I had a baby, my mother passed away from this same disease, and I was not going down with this. I said, ‘Get me on the table,’ and had a double mastectomy almost immediately. During treatment, it’s like you’re running on empty, but have all this energy — it’s a crazy feeling.”

Related: 24 Celebs Touched By Breast Cancer – And The Lessons We Can All Learn From Them

8. But cancer also depletes you physically and emotionally.  

“One night in the middle of my treatment, I was sitting with friends, a normal night, talking about parking tickets, and I just lost it,” says Meade. “After a while, you’re so depleted. You’re so tired. I found out I was suffering from PTSD. Cancer is a war within yourself; something inside you is trying it kill you. You don’t get to sleep well at night knowing that. So I sought the help of a therapist specializing in young breast cancer survivors. I was overcome with anger and grief, and I needed help. I also met with other survivors, which was hugely beneficial. I’m normally very independent, but this is something that cannot and should not be handled alone.”

9. You’ll realize that sometimes you’re your own best advocate. 

“African-American women are at a higher risk for triple-negative breast cancer (TNBC), an aggressive form of breast cancer that, compared to other forms, is harder to treat and is more likely to come back after treatment,” explains Felicia Mahone, a 35-year-old from Union City, Georgia. “I was diagnosed with stage-2 triple-negative breast cancer at 27. My mother died of breast cancer at 29. Two of her sisters died of breast cancer, one of them in her early 30s and another when she was 50. I’ve had six maternal cousins have breast cancer. Two years before I was diagnosed, my first cousin — and best friend — died at 25 of breast cancer. And then I got cancer, and I had to be my own advocate. 

10. But a network of support matters, too. 

“I learned how important it is for families to be a part of the treatment experience,” Mahone says. “Support from friends and family matters. My family figured that I was strong and I would be OK, so they really weren’t there for me. At first I was angry, I felt like they should have been there, but going through it alone helped me become strong. I became a patient navigator for Avon because I didn’t want anyone to go through what I went through alone.”

11. Chemo will knock out your menstrual cycle. 

“With all of the chaos, confusion, and questions that surround being diagnosed with breast cancer and the concern with saving your own life, fertility doesn’t come to the forefront of a diagnosed woman’s mind until much later,” says 36-year-old Kimberly Williams, a Los Angeles resident who was diagnosed with stage-2A breast cancer. “One of the biggest side effects of chemotherapy is that it knocks out your menstrual cycle; being a young, 29-year-old woman at the time of my first diagnosis, I had asked my doctor if my cycle would return post-chemo. He told me that he wasn’t sure, because there has not been a lot of research done on young women and breast cancer. I was so sad and confused, because when I was concerned about saving my life and starting chemotherapy as soon as possible, I did not have time to really research my options. 

12. Have the fertility talk before starting chemo.

“Fortunately, one year post-chemotherapy, my menstrual cycle did return. So fast-forward to a second diagnosis,” says Williams. “I had my fertility doctor run some tests, and he shared with me that half my egg supply had been wiped out due to my first round of chemotherapy, and that my second round would probably wipe my egg supply out completely if I decided not to freeze them. Life after breast cancer continues, so preparation and spreading knowledge is so key.”

13. What’s ‘normal’ changes after treatment in ways you don’t expect. 

“I was diagnosed in May 2014, at the age of 26. I never imagined the aftermath of my treatments would be so difficult, almost as hard as the treatments themselves but in other ways,” says Kimberly Santagata, a 27-year-old from Boston, Massachusetts, diagnosed with stage-2 triple-negative breast cancer. “For example, how difficult it is to find your new ‘normal.’ After I had my mastectomies, I was having a hard time with my body image and self-esteem. It is very difficult to say goodbye to a part of your body, and then see it change and feel different all the time during the reconstruction process. I am reminded every day of what I went through just by looking at myself in the mirror.

14. Not everyone’s post-treatment experience will be the same. 

“But I have come a long way,” says Santagata. “I am able to accept my new body more and more. I still struggle with not having the energy of a typical 27-year-old, which has made it very difficult to do my job as a nurse as often as I would like. Everyone handles the treatments so differently, so it is hard for the doctors to tell you how you are going to feel. I do believe life after breast cancer is something that should be talked about with your doctor, so you have the right aftercare to be able to handle the new challenges that are ahead of you. I do a lot of self-care and make my health a priority — because I only have one life to live, and I am happy to be here and living it.”

15. Be prepared for crazy comments from others about breast cancer — even complete strangers. 

“I’ve been in remission for 3.5 years now, and I’ve had both small and big realizations,” Stephanie Johnson, a 42-year-old from Dallas, Texas, diagnosed with stage-2B breast cancer. “When your hair falls out, all of it falls out — including places you don’t realize such as in your nose. Those mucus-holding nose hairs go away, too, and that means lots of tissues. Not everyone can handle seeing someone with cancer so be prepared for some friends to fall away. It’s not personal. It’s OK that not all people cope the same. Total strangers will say some of the craziest things to you. Some favorites for me were, ‘Cancer is a government conspiracy. They have a cure. They’re just not telling us what it is,” “Can’t you just take a lot of vitamin C?’ and “I’m so tired of pink ribbons.’”

“It’s OK that not all people cope the same,” Johnson says.” (Photo courtesy of Stephanie Johnson)

16. Cancer can strip your self-esteem — but also teach you to let go of others’ expectations. 

“It both slayed and rebuilt my self-esteem,” Johnson says. “So I learned to let go of everyone else’s expectations and sticked with my own essential needs, which helped. When my hair first started coming out, that’s a big hit on the self-image. Mostly because now I looked like a cancer patient. After a good cry with one of my dearest girlfriends, I realized I couldn’t control how others reacted to me. I could only handle how I felt and marched forward.”

17. Breast cancer strikes even those with no commonly known risk factors (unhealthy lifestyle, family history, etc.).

“I was diagnosed with breast cancer on Black Friday of 2013. I was blindsided. I was young, 32 years old, with no family history of breast cancer, a healthy diet, and a regular exerciser,” says Julie Rosenberger, A 34-year old mother from Holland, Pennsylvania, diagnosed with stage-2 breast cancer. “So I was suddenly catapulted into taking immediate action, and underwent a double mastectomy and chemotherapy. When more action and a choice of treatment was required, I had to rise to this challenge. My tumor was in my left breast, right over my heart. Intuitively, I felt that radiation would pose health risks, and I had to find out for sure.”

Related: Online Calculator Predicts Your Risk of Developing Breast Cancer

18. Don’t just count on your doctors and care team to tell you about treatment options — do the research yourself. 

“Along with my family, what kept me going was that I became an empowered patient — the best advocate for my own care,” Rosenberger says. “I immersed myself in research to identify the best option for the next phase of treatment. I ultimately chose proton therapy, which would avoid damaging surrounding tissue and critical organs, like my heart, and minimize side effects. This was an important choice for me because of my age. I felt I had a lot of life ahead. Throughout treatment, my mantra was, ‘I have to be healthy for my twin girls, I have to watch them grow up. I’m determined to celebrate more anniversaries with my husband.’ No matter where you are, no matter who you are, it is vital to be armed with complete information about treatment options and health impacts. This is crucial for young women, who may face health issues down the road that may stem from treatment. It is well worth the extra effort and time for research.”

19. You may experience symptoms from chemo long after the treatment ends.

“Do not play the blame game after diagnosis. How and why you have cancer is not as important as beating it,” says Melanie Young, 56, from New York City, New York, who was diagnosed with stage 2A breast cancer. “You can combat the effects of chemo and radiation with hydration, exercise, sleep, and smarter nutrition; pace yourself and stay ahead of your nausea by watching what you eat. ‘Chemo brain’ was unexpected, scary, and more common than I realized with lingering effects for women after treatment ends. Same with neuropathy. Now, six years later, I still have neuropathy that I alleviate with yoga, stretching, and walking. You will be more physically limited post-surgery than you expect and for quite some time, so have plenty of pillows to prop yourself up.”

20. Doctors know a lot — but most cannot actually tell you what it physically and emotionally feels like to go through cancer treatment. 

“In the years after treatment, you may experience delayed reactions or post-traumatic stress,” Young says. “You may question everything in your life. Really, doctors can only tell you so much. They can’t tell you what it feels like to have chemotherapy enter your bloodstream. They cannot tell you what it feels like to lose your hair. They cannot tell you how long it will take to heal physically and emotionally. That is why peer support is so important, and there are many wonderful organizations that offer it.”

21. We’re caring about breast cancer too late. Even young women should be aware of the symptoms.

“What I have learned about breast cancer is that the conversation is starting too late for women, and that it’s not always linked to family history,” says Heather Almond, a 37-year-old from Newcastle, Washington, who was diagnosed with stage 2B triple-negative invasive ductal carcinoma. “There are many lifestyle choices and strategies women could be implementing in their daily lives to reduce their risk, but that’s hard to do if you are not aware of them. Early detection is critical, too, especially for young women. If you are not performing monthly self-exams or if you do not know the symptoms of breast cancer, waiting until an annual mammogram at 40 could prove deadly.”

“There are many lifestyle choices and strategies women could be implementing in their daily lives to reduce their risk, but that’s hard to do if you are not aware of them,” says Almond. (Photo courtesy of Heather Almond)

“I am incredibly thankful that I attended Bright Pink’s Brighten Up Workshop a few months prior to my diagnosis; signing up for the monthly Breast Health Reminders saved my life,” Almond says. “Now that I’ve completed my treatment, I’m focused on cherishing each day and opportunity. I want to be a strong role model for my very young daughter, and I believe increasing awareness about breast cancer is one way of doing that.”

22. It’s important to continue to love and respect your body for all it does for you.  

"After being diagnosed, I started showing my body the love and respect it deserved, instead of feeling disappointed and letting me down with cancer,” Christine Egan, a 48-year-old from Long Island, New York, diagnosed with stage 2 breast cancer. “Instead of focusing on my dimpled legs, I would change my thought pattern to how strong my legs were for helping me run my half-marathons. I would receive massages weekly while undergoing treatments; I wanted my body to remember what positive touch felt like after being handled in such a medical way.”

“After being diagnosed, I started showing my body the love and respect it deserved,” Egan says. (Photo courtesy of Christine Egan)

"Instead of pretending my scars weren’t real, I started writing love letters to my body parts. By thanking my breasts for feeding three kids and for still being a part of me, I was able to send my body the love it desperately needed to get me through treatments and beyond. 

23. Cancer drains you. Only say ‘yes’ to what makes you happy and what you consider important. 

“While undergoing treatments it was impossible to keep doing every activity that I was doing before cancer,” Egan says. “So I only said ‘yes’ to the things that made me happy; I only participated in the things that were really important. Some of my kids’ activities were attended. I had to say ‘no’ to some business activities. The laundry piled up, and sometimes the dishes were left in the sink. I needed to be OK with that, because the important things always managed to get done.”

Read This Next: 16 Pink Products That Actually Benefit Breast Cancer Patients (We Vetted Them!)