Feeling sad today

I can't stop crying today. It seems like a years worth of tears are coming out now. I never even cried when I was diagnosed. So what's the deal now?? Ha ha! I'm crying over TV shows, things I read online, the current book I'm reading...

Thanksgiving

I am so happy that I feel so much better this year! I missed Thanksgiving dinner with my family last year because I didn't feel well. 

I am thankful for my family and friends who were with me thru the chemo and radiation and surgeries of the past year.

I don't do Black Friday ever since I got hit by a cart one crazy morning in Walmart. Today I did go for a little afternoon shopping and scored!! I got a kayak for $99.99! They were sold out but let me pre-pay for one in the next shipment. I have wanted a kayak for at least 10 years. I think it will be great for my arms with the lymphedema and problems with range of motion. I'm excited! Now I just have to wait for the lake to thaw...

Fatigue

I went to a new primary care doctor on Nov. 18. I liked her a lot! I explained my fatigue and the fact that I feel crappy most days. She asked if I'm anxious or depressed. She said most women can't get through all of this without some type of medication. I told her that I'm anxious. She increased the dose of my Effexor to 75mg to see if that helps with the anxiety and to see if it helps me sleep better at night. I was hoping that my blood work would show that something was "off" but it came back normal. 

She asked me if I exercise. I just kind of looked at her for a moment thinking "Are you kidding? I don't even want to get out of bed in the morning!" I did go on two really long hikes this past week and that felt really great!

I read something last night about adrenal fatigue. I wonder if that is what is going on with me. I will have to do some more research into it. 

I'm thinking about going vegetarian for a while to see if that helps. I'm definitely going to get out my juicer and make a tasty (not!) green leafy drink.

Funny thing about hot flashes...

So, I know to expect a hot flash with my morning coffee and as soon as I get into bed at night. I usually have one in the evening around 9:30 or 10. I can't seem to figure out what triggers them other than caffeine. A few weekends ago I had a two-day class to attend and I was worried about being anxious and having sweat dripping down my forehead. During the day there were several times that the presenter lowered the lights for a video. That is when I had a hot flash--every time the lights went down! I'm still trying to figure that one out! This past week I went on a night hike for several hours and the temperature dropped down to 19 degrees. Do you think I had even one hot flash? Nope. My personal furnace failed me. I had to laugh at that!

Tattoo video

http://www.upworthy.com/you-might-see-tattoos-in-a-new-light-after-you-see-them-on-this-woman?g=3&c=upw1

Medical records

I was excited to receive a thick envelope in the mail last week. Copies of my recent medical records. Interesting reading...

Apparently my last CT scan showed a "healing fracture" of my left sixth rib. I had no idea. That explains the intense pain I had back in June but it's crazy to think I fractured a rib by picking up a 15 pound dog! I suspected that pain was from the radiation treatments but I didn't realize that the radiation can weaken the ribs enough that a cough can cause a fracture. Oh boy, more fun to look forward to! ;-)

I enjoyed reading the details about my surgical procedures.

I did not enjoy reading the radiation oncologist's  notes that stated that I was a "young woman" at one appointment and a "middle aged woman" at another. How quickly we age...

Mondays at Racine

I just finished watching the short HBO documentary called Mondays at Racine. Racine is a hair salon run by two sisters and one Monday a month they offer free services to breast cancer patients. 

Post about pink October

I saved the draft of this back in October and never published it.
This is a post from breastcancer.org and not written by me:

Disclaimer-Yes, I am happy that breast cancer is funded through the actions of others. Some companies give a lot, others don’t give as much as you would think. I am grateful to still be counted as a survivor. I am grateful that there are runs and walks in order to raise awareness. I am thankful for all my family and friends who were supportive and there for me during TYOC (The Year of Cancer). I do, however, feel the need to post this note.

Pinktober…through the eyes of a breast cancer survivor

Well, it’s here. The month of October. I used to love October before I became the “one” in the 1 in 8. Really, if you live in NJ it’s closer to 1 in 7. Now, some of you may be puzzled by my lack of enthusiasm for an entire month dedicated to pink products. This includes products like pink ribbons, pink pins, pink clothing, pink kitchenware, pink appliances, pink tic-tacs and, yes, even pink buckets of Kentucky Fried Chicken. It’s time for me to let you in on a little secret. Many breast cancer survivors HATE this month and here are some reasons why:

1.Pink is a color that seems soft and cuddly. I’m not sure how pink ended up being the “color of breast cancer” but I can tell you for certain that breast cancer is definitely not soft and cuddly. I’m not sure what the opposite of “soft and cuddly” is but whatever it is, that’s the color of breast cancer.

2.Many survivors try to forget about breast cancer as much as we can. We can’t think about it all the time-it just doesn’t work for us. Trust me, I tried that. Being in a heightened state of fear is, well, it sucks. So, when it’s Pinktober and we go into a store, any store, just to pick something up, it brings us back to that scary place. Some survivors say that when they see the massive pink displays they relive the moment of diagnosis. That’s a lot of emotion to process when you just wanted a $4.99 rotisserie chicken.

3.When we express the fact that we hate Pinktober people will oftentimes look at us like there is something wrong with us. Let’s put it this way…If you were in a horrible fire and narrowly escaped, or got out but with burns to part of your body, would you really want someone to be waving a lit candle around you several times a day for an entire month?

4.There is so much pink crap sold by companies who actually give very small amounts to research. I hesitate to type this because of course we want breast cancer research funded. If you really want to help with that, donate money rather than buying a pink (insert name of product). Alternatively, read the fine print to see how much money is actually going to research breast cancer. Some companies donate a good portion of their profits to research and others, well, not so much.

5.This is the month where I get phone calls asking me if I want to “give to breast cancer awareness”. Really? I have to give money in order to be aware? It’s not like I can avoid being aware of breast cancer at least twice a day…every day….every single day. Additionally, I think giving an actual breast (which aside from the cancer was pretty ok), along with my hair (also pretty ok most days) for about a year sort of pays the tab for me.

6.This is also the month when people like to send survivors articles about what causes breast cancer. That fake Johns Hopkins one comes to mind. Please don’t send us that. It is not true and takes a blame the victim stance.

7.The slogans “Save Second Base”, “Save the Ta-Ta’s” “Save the Hooters” and “Big or Small, Save them All” completely miss the mark for many of us. It is NOT about saving body parts. It’s about saving lives.

Chillow

I have discovered the most wonderful thing called a Chillow. It's a cooling pad that can be put inside a pillow case. It's one of those "as seen on TV" items so I doubted it would actually work but it's awesome! I keep it by me at night and use it whenever I enter hot flash hell. I put it on my head or sometimes just my legs and it helps.

It stays cool all the time. I had to add water to it and roll it up to get the air out to "activate" it. I guess I just add a cup of water to it every month and its good to go.

PET/CT results from Sept. 23

Good results from the scan! No evidence of active cancer. I haven't talked to the doctor yet but I assume that that means I still have the residual cancer in my armpit/chest wall but no spread. I'm happy!

Fatigue

I'm trying to figure out what is causing this extreme fatigue. I feel completely wiped out even when I get out of bed in the morning. No energy. No desire to do anything that involves leaving the house. The thought of driving anywhere makes me exhausted.

I think it may be caused by:
--the Tamoxifen
--the Effexor X
--the Tamoxifen AND Effexor together
--my lack of estrogen from the ovary removal
--residual fatigue from chemo/radiation
--not being able to sleep at night due to hot flashes

I may need to schedule an appointment with the oncologist to find out what's up. I don't even have the energy for that right now. Ugh! Time for a nap...

Hot flash blog

http://community.breastcancer.org/blog/hot-topic-chilling-the-hot-flashes/

What's your level of pain: 1 to 10?

I think it's kind of funny when the nurses ask me that. I never know what to say but I've learned that if I say "5" they'll give more pain meds.

To me a 10 on the pain scale was when I ripped part of my big toenail off after hitting it with a door. Or when the patient care assistant pulled on my drain tube after my mastectomy.

The radiated/burned armpit ranked about an 8. So with this most recent surgery the pain has been almost as bad as the armpit but not even close to the toenail. So I guess I'd give it a 6 or 7...;-)

Bilateral salpingo-oophorectomy

Had surgery yesterday (8/5) to have ovaries and Fallopian tubes removed. I couldn't have anything but clear liquids all day on Sun (8/4). I had to be at the hospital at 8:10am and I was back into recovery around 10:30am. I asked for extra anti nausea meds before and during surgery. It helped a lot! I felt pretty good with no vomiting. I still had to stay at the hospital until around 5pm. I had to be able to tolerate the pain, eat (crackers), drink, and urinate. I have issues when I have to pee under pressure like that especially if I know a nurse is lurking outside the bathroom. Finally as I was distracted by blood dripping from my hand where my IV had been I was able to go. Whew! Then I got to be discharged.

Up now at 12:17am with slight pain and slight nausea. Took another Norco pain pill (Tylenol and hydrocodone).

I have 3 incision sites: one is vertical about 1 inch long just below my belly button, and the other 2 are horizontal and about 1/2 inch long lower on my abdomen, right and left of navel.

The right side is painful.

Good articles:

http://www.cancer.gov/cancertopics/coping/life-after-treatment/page7#f2

http://www.cancer.gov/cancertopics/coping/life-after-treatment/page7#f3

http://minnetonkatwin.hubpages.com/hub/Cancer-Diagnosis-Leads-to-Loss-of-Friends

You can't ever forget

I hate it that I'm constantly reminded that I have cancer. It's always a news topic. I always see it in magazines. I hate the pink ribbons! I never liked the color pink anyway! 

I get angry about the cost of treatment. I get angry that organizations take advantage and use the pink ribbon for their own benefit.

Sometimes I need to take a "no worries/no stress" timeout. Sometimes I just can't deal with things and need a break. So I call it and just don't deal with crap for a couple of days. I just tell myself "ah, just deal with it on Tuesday..," :-)

Physical Therapy

I told my oncologist that I was having shoulder pain so she referred me to a physical therapist. The PT was Ellen who had already been working with me with my lymphedema in my arm. She's awesome! Ellen said my range of motion is not good (since my surgery). I have exercises that I have to do every day.

PET/CT in September

I had an appointment with my breast surgeon on Monday. She ordered another PET/CT scan of my chest/lungs. The last scan in June showed scarring in my lungs. The radiologist who read the results is "brilliant" according to my surgeon and is rarely wrong. He said in the report that it didn't look like a malignancy.

But more worry. Constant worry about something...

Oophorectomy

"Oophorectomy is sometimes recommended when the hormones produced by the ovaries are making a disease such as breast cancer or severe endometriosis worse.

In some cases the ovaries are removed in an attempt to reduce the possibility of developing a future disease, such as ovarian cancer. This is called aprophylactic oophorectomy."

--from WebMD

I am scheduled for surgery on August 5th. The doctor said the surgery takes about 30 minutes and she will make 3 incisions and it's done laparoscopically. She'll remove my ovaries and Fallopian tubes. The BRCA 1 mutation increases my risk for ovarian cancer and the surgery will also stop the estrogen production since my cancer is estrogen positive.

Not looking forward to being sick from anesthesia again. Ugh!

Effexor XR

Effexor is the drug that is supposed to help with my hot flashes. It's an antidepressant but is given in a lower dose for hot flashes. I've been taking it for 2 days and I'm not liking the side effects so far: loss of appetite, mild nausea, grogginess. I do think its helping with the hot flashes and I'll give it a week to see if the side effects go away.

Hot Flashes

From Breastcancer.org:

"A hot flash is a sudden, intense, hot feeling on your face and upper body. Hot flashes can be accompanied by a rapid heartbeat, sweating, nausea, dizziness, anxiety, headache, weakness, or a feeling of suffocation, followed by chills. Hot flashes are caused by a decrease in estrogen. When estrogen levels drop or estrogen receptors are blocked, the body’s temperature control system gets confused and the result is hot flashes.

Hot flashes are a symptom of menopause. If you’re having treatment for breast cancer, hot flashes can be more intense and last longer, particularly if menopause was medically induced."

I've had hot flashes since starting chemo and they have been worse lately since I started on the Tamoxifen. My oncologist prescribed Effexor (a mild anti depressant) to help with the hot flashes. So we'll see how that works...

Good blog article

http://m.huffpost.com/us/entry/3539970

Tamoxifen

Tamoxifen is a drug that interferes with estrogen. It is a SERM (Selective Estrogen-Receptor Modulator) and it binds to the estrogen receptors in the breast cancer cells so that the cancer cells can't use estrogen to grow.
Tamoxifen has been used for over 30 years to treat breast cancer and for over 10 years to reduce the risk of breast cancer. It is usually taken for 5 years. I will switch to an aromatase inhibitor drug once my ovaries have been removed.
Side effects of Tamoxifen haven't been too bad so far. I have noticed an increase in hot flashes and occasional leg cramps but that's about it...so far.

Oh, by the way...

Apparently there are more side effects from radiation than were explained to me at the time.
In addition to the cough I've had since my last treatment (apparently a portion of the lung is in the
field that's radiated) I now have rib pain on the left side of my chest. I was told that is also from the radiation. Lovely. I wonder what else will show up...

People you meet

When I was waiting in my gown at U of M I met several nice women including a set of twins. One of the twins had just been diagnosed and her sister had come along to support her. I enjoyed talking with them and answering their questions about my experience. I wish I would have gotten their contact info so I could keep in touch. They were planning to dye their hair red the next day and then get it cut short. Another woman waiting there got good results from her mammogram and before she left she wished us all peace. I felt it. Another woman hugged me before she left the room.

A couple of days after my surgery I was in the dollar store in line to check out. The woman in line in front of my tapped my shoulder, pointed to my hat and said “chemo?” Turned out she had been fighting cancer since she was nineteen and developed leukemia. She also had breast cancer and now has a tumor in her brain. She said to stay positive.

Angelina Jolie and BRCA

I saw on the news that Angie had a double mastectomy because she tested positive for the BRCA gene mutation. It’s unfortunate that there are many women out there who cannot afford the $3000-4000 for the genetic testing. I was lucky that the Komen organization paid for my testing. Everyone has BRCA genes and they help repair any damage to DNA during cell division. But if there is a mutation in the BRCA gene then the abnormal cells can multiply and cancer can develop.

I have a BRCA 1 mutation which means I have a higher chance of developing another breast cancer or ovarian cancer. I apparently inherited this gene mutation from my father because my mother tested negative.

I think it was a good thing for Angelina to go public and raise awareness about the BRCA genes but then I also worry about the women who can't afford to be tested.

Also, one lab does the testing. Just one. How do we know that they are testing correctly? It seems like suddenly so many women have the gene mutation but maybe that's because more are being tested...

U of M

I went to the University of Michigan cancer center for a second opinion. I felt that it was a complete waste of my time. I had to arrive at 8:30am and was taken into the breast imaging waiting area. I sat in the waiting area (in a gown 3 sizes too large) for hours. I was called in once only so they could tell me that they were having trouble downloading my imaging from the other hospital and it would be a bit of a wait. Then I got called in for a mammogram. Then they had to repeat the mammogram. More waiting… Then they were going to do an ultrasound and I was interrogated by the radiologist.

Radiologist: What did they tell you the next steps would be?

Me: My doctors said I needed to come here for a second opinion.

Radiologist: But what did they tell you about what you need to do next?

Me: They told me to come here for a second opinion on how to proceed.

THEN they realized I no longer have lymph nodes in my left armpit to ultrasound. Radiologist left in a huff.

I was then allowed to dress and since it was almost noon I was hoping for lunch. No. Next I had to put on another gown and meet with a nurse practitioner. Then we grabbed a quick lunch in time to hear a nurse navigator talk about absolutely nothing. After that I went to wait to be called for my appointment with a doctor.

They use a multidisciplinary team approach to decide on treatments. So a group of doctors was supposed to be going over my case, reviewing my imaging and pathology slides, etc. The nurses called it the “tumor board”.

We waited in the exam room for almost 3 hours (I was in yet another XL gown). The doctor came in, sat on the stool and wheeled herself right up almost knee to knee with me and told me my cancer is “incurable”. It's amazing that one word can completely suck hope out of a room. After that I kind of went into a rage. I saw red. I had thoughts of just getting up and walking out but I was in a gown. She then proceeded to draw a picture about the ovaries and hormone production. My tumor was estrogen positive which means it uses the hormone to grow. I will need to have my ovaries removed to stop the production of estrogen. The adrenal gland also produces a form of estrogen so after I have my ovaries removed I will take medication to inhibit the formation of estrogen. Then I will need periodic scans and bloodwork. It is considered stage IV because of the positive lymph node in my right armpit. Normally, stage IV means the cancer has spread to other organs like the liver or lungs. The doctor said it can be considered to be in remission but there is “no cure in 2013".

Helpful organizations

These are some helpful resources for people with breast cancer:

The Pink Fund
Susan G. Komen Organization
Gilda's Club
Good Wishes Scarves
My Hope Bag
The American Cancer Society

The Pink Fund helped pay my car payment for 3 months while I was going through chemo.

The Komen organization paid for my genetic testing that determined I have the mutation on the BRCA 1 gene ($3,000 test).

Gilda's Club has many great programs for cancer patients/cancer survivors/caregivers.

Good Wishes sent me a free head wrap.

My Hope Bag sends free bags of goodies to cancer patients.

The American Cancer Society helped me with a free wig from their wig bank.

Where I am now...

I started radiation treatments in Jan. and had a total of 35 treatments. My skin did fairly well except for my right armpit. It felt like a really bad sunburn and the skin peeled in that area. I saw my radiation oncologist on April 22. He called me "one tough cookie" and said I don't need to see him again. Whew!

I had surgery on Apr. 10 and spent one night in the hospital. They had planned to do a latissimus dorsi flap (involves tunneling the muscle from the back around to cover on the front after the mastectomy) but that wasn't necessary because they were able to close with my skin. So the mastectomy on the left plus axillary lymph node removal on both sides. The surgeon said the lymph nodes in the left armpit were "a mess". I'm healing well but still sore in the armpit areas and still have some swelling in those areas. The worst part of having surgery was the nausea after from the anesthesia. I was sick until about 3am then I felt fine. I had 3 drains placed, 2 on the left side and 1 on the right. They include tubing attached to grenade-looking bulbs. The bulbs have to be emptied a couple of times a day. I had to shower with them safety pinned to a lanyard so I wouldn't accidentally pull them out. I also safety pinned them to my clothing at all times. The first 2 were removed a week after surgery and the second was removed 2 weeks after.

The pathology report showed that the surgeon didn't get clean margins in a couple of areas. That means there was still cancer at the edges of the tissue that was removed. In my case there is probably cancer still deep in my left armpit area and in/near the muscle of my chest wall. Of the 18 lymph nodes removed from my right armpit only one was positive for cancer. Because of that one positive lymph node technically it is metastatic.

I am currently waiting to get an appointment at the University of Michigan cancer center for a second opinion on how to proceed. They said I will be there all day so I'm not sure if they will repeat all my scans/tests. They will also review my pathology slides. I may have to have further chemo and possibly be enrolled in a clinical trial.

PET scan

On Dec. 20 I had a PET scan because there was some concern about an area on my sternum that they had seen during the bone scan. The doctor called me the same day with the results and things look good, there's no evidence of cancer anywhere else. I didn't realize how nervous I was until I got the results and felt such incredible relief! I did a happy dance!

6th round

In the chair in the chemo room. I don't want to be here! This should be the last treatment though! Tomorrow I find out more about when the surgery will be or if I need radiation before. I'm meeting with a team of doctors at St. Mary's. I want to be done with all of this...