The hope that got me through cancer...

It's a New Year, and a new hope. I've completed cancer so I'm looking forward to the future. It was fantastic to hang out with my boyfriend's niece and nephew over Christmas. My boyfriend and I can't wait to have our own family. We've dreamed of that for the past  4 1/2 years. (We even have our names already picked out.)   That dream is what got me through cancer. I can't wait to be a parent with him. And I can't wait for us to have everyone who supported us during this cancer journey to meet our family, once we get it started. Tehehe...

The problem is that chemo can make a woman sterile. It can take up to 12 months after chemo for a woman to get her period back. I can say that's not looking so good right now. I don't know if it will return. 

Luckily, I underwent two egg retrieval procedures in 2013. My future family is safely resting in the freezer at the clinic. It sounds surreal, but I like to think that they are on lay away--ready for their mom to welcome them into the world. (I'm completely tearing up as I write that. It's incredible to think that I can be a mom someday.)

The other issue is the cost of IVF.  I finally have some of the total cost for my cancer treatment.  The tab is now at: 

• Lumpectomy, remove cancer lump = $2,000 our of pocket, insurance covers $13,000
• Anesthesia = $1800 out of pocket, insurance covers $1,800
• Lab work = $600, insurance covers $1,400 (plus more lab work to come)
• Egg retrieval x 2 = $11,400 out of pocket, $5,500 covered by insurance
• Freezing eggs, which insurance does not cover = $300, out of pocket annually, if I qualify for financial assistance each year
• Medications for lump removal and chemo = $500 out of pocket, insurance covered the rest
• Medications for fertility = $100 (Received $9000 worth of free fertility drugs, insurance did not cover the drugs for the 2nd round of egg retrieval)
• Cold caps = $3,500 out of pocket, insurance doesn't cover
• Wig plus hair care products for it = $100, insurance covered $200 (Cold caps did not work as well as planned.)
• Chemo = $500 out of pocket, insurance covered $32,500
• Radiation = $2,500 per session x 5 days a week x 7 weeks = $87,500 = unknown because insurance has not paid out yet. They hopefully will cover it in full.

Total  to date = $162,600.00

Cost covered by insurance = $141,900.00

Out pocket expense I pay =  (assuming my insurance will pay for my radiation in full) $20,700.00

The balance I have to pay for my IVF is $11,400. Insurance will not cover any futher costs for it. Of course, the out of pocket expense I have to pay for cancer treatment wiped out the money I set aside for IVF.  It's up to me now. 

This is where I need your help. I'm trying to raise money to cover some of the cost for the IVF. I know that it's a lot to ask for help, but I'm at the end of the road. I've exhausted every financial assistance and resource out there. I won't be able to afford having a family at this rate. 

I've set up a gofundme page to change this. Any support, financial or sharing this with others, will make a huge difference. Please share this story with other women who have gone through breast cancer. I want them to know that there is hope, you can have a family, and this is how you can make that happen. To that end, I've shared my story about the unknown challenges that come with cancer with that goal in mind. I hope that I can share this story with my children someday. Your help with make that happen. 

Thank you for reading my posts and helping me during this long battle with breast cancer. Best wishes in the new year. 

I'm FREE!! Just in time for the new year..

I got the best Christmas present I could ask for. It's the best way to start the new year. 

I just wrapped up my 6 month battle with breast cancer, two days after Christmas. I'm official!

There are a lot of feelings I could blog about, and I will later on. For now, I just want to celebrate the joy that comes with ending this long journey. It was surreal today leaving after my last radiation appointment. It dawned on me that I no longer had to plan on daily appointments and pain from each session. I honestly didn't know what to do with myself. 

I felt like doing the traditional celebration pose, as they did in Toyota commercials in the 1980s. 

My first thought is to say thank you to all the people I love. I have to do a first thank you to two people that I haven't thanked enough. My mom and sister. It has to be the hardest thing in the world to have someone you love go through cancer. The thought that they may die is crippling. But helping the person face it bravely, going with them to each chemo appointment, and administering pain inducing cold caps is difficult at best.  They stuck with me the whole way through. They each provided me with a support network to fall back on when I needed it most. They have made me laugh and never ceased to amaze me with their unending efforts to ease my struggle. I love them infinitely. Thank you. 

I can't forget the fabulous flat-mate of mine, Micaela. She always checked on me, listened and supported me through the hard months. I swear her ginger cookies are the only thing that got me through nausea after surgery, during chemo and when I needed a pick me up.  (They went great with my chemo beverage of choice: Calafia almond coconut milk.) Thank you for being there from the beginning to the end.

I also need to thank two friends that were with me when I needed a break from cancer. They kept my spirits up by visiting me and making me laugh on walks. Crystal & Jolene, thank you for keeping me grounded and smiling. It meant the world to me.

I need to thank all the other people that hung out with me and my boyfriend--our friends and our families. It allowed me to feel normal and happy during the chaos. I appreciate the generosity and time you shared with us both, especially being there when we needed it most. Thank you.

I also need to thank the incredible staff at Good Samaritan Hospital Breast Care clinic. They were fantastic--both the clinicians and the great ladies at the Next Step Boutique  next door where I got my hair prosthetic. Each nurse and technician remembered my name. They greeted with a smile and warm blanket on each visit. They answered my multitude of questions. Each visit felt like a visit to a warm office, not a sterile clinic. I gave them all hugs on my last day. They kindly provided me with a certificate and blanket to mark the end of my journey with them. 

All the other nurses, doctors, and technicians I've worked with, my chemo doctor, fertility doctor and surgeon, were the best I could ever ask for. They answered all my questions, helped me with my side effect concerns, and kept me calm during the difficult times.   Thank you to them all.  If you ever need a few great doctors in the Bay Area, let me know. I can't begin to say how highly I think of them.

Then there is another person in particular I need to thank. I hope he knows who he is. There is only one person who could surprise me on my last day of radiation. He unexpectedly turned up with this delicious bouquet. What he didn't know is that I've secretly wanted one for years, and he treated me to it. He's incredibly sweet, and he's the unexpected love that entered my life five years ago. 

Three cheers for my man. Some people know they have met their match when they meet for the first time, they have similar life goals, or deal with the usual challenges in a relationship. I have all that and more with Mr. Mike. The true test of a man is when he stands with you in adversity, can find humor and face it with you bravely. I'm humbled and amazed by how truly incredible he is while he travels with me in my battle with cancer. I can't imagine or be more grateful to have him in my life. Thank you.

On that note, I wish all  of you a Happy Holiday season. May the new year bring you the same happiness that we feel right now--full of health, happiness, laughter and all the love your heart can handle.

X marks the spot

Just a quick radiation update. I've got 3 sessions left. Huzzah!

The last 5 sessions that I have are "boosters." That means that they radiate the exact location of cancer growth. This targets scar tissue that is left in the area where the lump was removed. (Radiation of my entire breast is done.) 

The booster is done by targeting the scar itself. The target area is marked with a large "x" in sharpie marker. I move into the same position as my previous sessions. The an attachment is put on the machine so that it filters the radiation beam to the target spot.  It takes 5 minutes and I'm out. Quick and easy. Here's what it looks like.

Now for the side effects... I have a nice tan on my breast. I've put some photos below. You can see that the red tissue is where the skin is reacting to the radiation, aka radiation burn. That is why they recommend that you put Sween or other skin treatment lotions that are meant for cancer treatment.  It's pretty red and raw. I still get routine swelling and pain in the scar "x" spot. (Sorry for the full shot.) You can see that the skin is starting to grow back already where it's red under the peeling darker skin. I'm a fast healer. :)

Otherwise, I'm finally starting to get some energy back. Just in time for the holidays. I even had enough energy to go to a  hockey game for the San Jose Sharks; of course they one. It was a well deserved treat for me and my man. 

I've lost enough hair to the point where I'm wearing my wig each day. I've received more compliments about my hair as a red head than I have as a brunette. Maybe it's time for a permanent change? I'll let you be the judge of that. 

Tattoo time?.... Fun with radiation

With chemo over... Radiation began 1 week later. Typically, people wait 3 weeks after chemo to start.  I couldn't wait that long because I need to get my treatment done before the end of 2013. My insurance will cover everything in full as long as it's within this calendar year. So here's how radiation works...

Treatment for me would last about 7 weeks. I go in daily. Each session lasts about 15-20 minutes. Prior to starting treatment, each patient goes in for prep work for the radiation. I had a special visit when I see a technician and we get my treatment position set. This is the same position that I will have to hold for each treatment session, every day I go in. 

When I walked in the first time, the technician said he would have to tattoo tattooed my chest and under my arm so they are markers to keep my position the same. I did not know that I would get tattoos until I was on the treatment couch. I've always wanted a tattoo, but I didn't expect this. Each tattoo looks like a blue freckle. You can see it in the photo below. Once the position and images are taken it serves as reference points for each treatment so the patient is in the same position each time.  

Each visit requires me to disrobe from the waist up. I get to wear a lovely, open back gown--the type where if you don't wear pants you moon the people behind you. The nurses offer me a blanket usually because the room with the radiation machine is temperature controlled and shielded. I can wear the blanket on the areas that will not be radiated.

I am escorted back to the room. I lay down on the couch.  To be fair, the couch is not a real couch. It's more of a flat vinyl table that moves you into position under the radiation machine. I place my arm in mounts that hold my right arm over my head and expose my breast and under arm.   The radiation beam targets my right breast, where the cancer was, and under my right arm, where 3 lymph nodes were removed. The radiation beam is invisible. Some people do not feel the beam. I feel it a little bit each time I go in. It doesn't sting, but there are times when I feel a slight sharp pain while under the beam. I think it's because my arm is in such a unusual position each day. Most people don't feel pain. (There is nothing invasive, thank goodness. And it's in a large open room, no need to feel claustrophobic.)

While I lay down, the technician moves me into position. When everything is set, the technician steps out of the room to begin treatment. The machine arm does a full 360 degree rotation to move the beam into position. Each time the beam goes on, a light flashes as a warning that it's operating. The beam is targeted to match the exact size and treatment area. It's not like an x-ray where it goes through an entire area. Each time a different location is targeted, the machine shifts the beam to match the new target.  After each area is complete, the machine moves back into it's stand by position. The technician returns to the room, escorts me out, and I go back to change. Treatment done in less than 15 minutes. Much faster than chemo. 

Strange as it may read, I was so excited to get treated on this machine. I work at the company that makes it. I made sure before I started radiation that I would get treated on one of our machines. It's comforting to know some of the people who physically make the machine. They are guys that I greet each day. Powerful stuff. Ironic how life plays out I guess. The good thing is I know that the quality of treatment I get is the best in the market. 

Here's a photo of what the machine looks like. My boyfriend kindly took the photo.

The hospital I go to would not let me do video of my radiation treatment. But I did find video of it online. It's a first person GoPro video of what it looks like while under a radiation machine. And it's really informative. Please pardon the narration. 

Of course there are side effects. The major one is radiation burn. Think of it as a sunburn that gets worse after each treatment. It's hot, swells, inflames, and leaves the skin raw after a while. A person with fairer skin will have a stronger reaction. I use a special moisturizing lotion, Sween, designed for cancer patients to reduce the pain from the burn. Sween is great to use outside of radiation treatment too for exceptionally dry skin. It's think like vasoline, but not as oily and does not leave the nasty film behind. I apply it twice daily, as the doctor prescribed. (Cold aloe vera lotion can help reduce the heat as well.) There are other lotions that work equally well. It just depends on your preference on which to use. 

Radiation burn turns up all over my breast, under and on top. It's under my right arm. Luckily, the skin is not too raw. It looks like caramel brown in some areas and red, tomato red on my skin. My entire breast is darker because of radiation. 

One week after radiation my lumpectomy scar sunk in. It became indented on my breast. Apparently, that's normal. It's also normal to have my nipples pucker in like a raisin. It's a trip when it gets cold outside then the area expands from warm heat. That area looks tye-dyed with the brown accents around and bright pink in the center, and tomato red skin on the exterior. I'm not going to show a photo of that, but I do have photos of what the skin looks like. It's washed out from a flash, but you get the general idea. 

(The blue dot under the scar is the tattoo.)

The part that sucks most is that the radiation makes me more tired than during chemo. I'm exhausted EVERY day. It increases as the weeks wear on. I have limited mobility with my right arm too. I can't lift it as far over my head as I used to. The lymph node scar under my arm gets red and inflamed easily from treatment. I get muscle pain regularly as a result. My right shoulder gets nerve pain at times too because of the position I continually hold it in during treatment. I can't stretch my right arm or reach for things very easily. Plus, I can't carry anything heavy for an extended period. (This makes carrying heavy gifts and bags of groceries really interesting during the holiday season.)

I've completed 5 weeks. I have 2 weeks left. I can't WAIT to be done.  But at least I got my first mini-tattoos. I count them. After all this effort, I am totally entitled to say that I have a tattoo. I can get a better one later on. But this works for now. 

Hair raising tales--cold cap update.

Just a quick update on my cold cap and saving my remaining hair. 

It's not that pretty. I'm still losing a decent amount of hair each week. Here's another comparison shot to see what's happened so far.

Before chemo: 

Week 6:

Week 8: 
  

 




I finally gave my new wig a try. Take a look: 

I have to put on a special cap under the wig to keep it in place, then slide it over my head. It remains in place quite well, no adhesive needed! There are special care instructions to keep the wig in good condition. The wig looks fabulous. My boyfriend went wig shopping with me. We both agreed that the red hair looks best on me. I've always wanted to be a red head, so this is the perfect look. Short, sassy, and red.  Then again, I looked pretty good as a blond. THAT surprised me. But, my boyfriend  made the final decision on which one to go with. It turns out that he prefers brunettes and redheads too. Yay!

Before I could get the wig, I had to make sure that my insurance would cover the cost of the wig. It turns out that they will only up to a set dollar amount. If I go to a wig shop that is within network, then my insurance covers more. I could not believe that they have approved wig boutiques. I found a fabulous one in San Jose. It's called The Next Step. They have any sort of supply imaginable to stay sexy during cancer treatment: swim suits, falsies, wigs, skin care... the works! But they are not in network with my insurance. I would have to drive 30 miles to go to a shop that is in network. Screw that. I got a little lucky. Because my deductible and annual maximum dollar amounts were met, my insurance said they would cover my 

I haven't given up on trying to keep the hair that I have left. The ladies at The Next Step gave some great recommendations. First, they recommended Brian Joseph shampoo. It's gentler than baby shampoo and moisturizes as well as conditioner. My hair is super soft afterwards. I'm looking into supplements too. I'm going to try collagen, biotin, Omega 3, and extra iron vitamins. They were recommended on many of the websites I've read. I've also seen recommendations to use Nioxin hair products to help strengthen the hair follicles that are left. I'm going to try Avalon Organics instead. It seems to be not as harsh, and I need that since the little bit of hair remaining. 

I'll let you know how things go with this.  Check out the links to my other postings about cold caps if you want the history behind this. 

Cold caps during chemo and How cold caps work  and Cold cap supplies

Surviving: Chemo and cold caps done. It's wrap up time.

I survived chemo. I can't believe that I made it through. I've heard that chemo can be more difficult than radiation. I was prepared for the worst. I was lucky that I did not get all the side effects that many patients experience. So here's the best and the worst of chemo. I'm going through radiation right now. Here's the link to the info for my radiation journey. 

I went through 4 cycles. That's four rounds of chemo with three weeks between each round. Before my day of chemo, I got my dry ice for my cold caps. I made sure that my suitcase of cold cap and chemo supplies was packed, and ready to roll. Next morning, I met up with my family to grab the coolers and supply suitcase. We headed over to the oncology clinic, then I had my blood checked one hour before treatment. If everything looked OK, then I was off to get my chemo started. I had to start my cold caps immediately while I received a pretreatment medication. The pretreatment ensured that I did not get a fierce reaction to the chemo drugs I received.  Then I received the chemo via IV. Each session took three to four hours, depending on how easy it was to find a vein to use for the IV. Click this link to view my review of the first 6 weeks of chemo. 

  

This a photo of how it looks after the treatment started. What helped a lot was a heated bag of rice that the nurses put over the IV. It reduced the burn as the drugs were administered on the IV.  

The cold caps had to be prepared by having one person take the storage container out of the cooler and storage box, don thick gloves that protect from the freezing dry ice, check the temperature to make sure it maintained at -32 Celsius at all times, then open it up the cap, knead it, and fit it to my head. You can see the step by step photos below.

Once it was strapped to my head, headbands wrapped around my head to keep the cap secure and tight. You can see the bands in the photos of me in the chair. The caps are changed twice an hour during treatment, then for 4 hours after treatment. That meant the entire day takes about 8 to 9 hours to complete the chemo and cold caps. The next day I received a stimulant injection to push my body to make more white blood cells. Then I spent the next 4 days resting and surviving the results of the 

The hardest part of chemo treatment was experiencing how cold the cold caps were; to say it was extreme is an understatement. The first 4 times the caps were changed were the worst. Then I started to get used to them. You can see in the photo of me above that I'm grimacing because I'm so cold. I look slightly out of it too. I was able to take some medication to help mitigate that. I'm just happy that I faced it head on and survived it. We'll get to how successful the cold caps below.

Apparently, I handled it exceptionally well. I lucked out with not experiencing all the side effects. My doctor, friends and family tell me they are so proud of me. But there was a huge emotional toll from the chemo and cold caps. I tried to find the humor in it. My sister and mom got me a Wonderwoman snuggie I could wear during chemo. I had my special supernova shirt I wore under my multiple layers of clothing. I didn't have a cape, but I still went into superhero mode. 

  

 

I wore my "toxic" shirt while I was under the IV and the cold caps. Then I took the shirt off at the end of the day. The photos of me below are from my very last day of treatment on Halloween.

I got to celebrate the last day of chemo with my man.(We dressed up as Wednesday and Pugsley from the Adams Family.)  I was so happy to be done. I couldn't wait to return the cold caps so I could start radiation after that. I figured I still had my hair, and I had not shed too much so I was in the clear. I had heard from people that radiation was much easier. But comparatively speaking, chemo took a toll on me. 

Every three weeks there was a set routine. It was a lot to go through, and face the physical side effects each week. I was lucky. The side effects are much harsher on others. Here's a realistic break down of what happened, the good and the bad. I'll break it down into for each cycle of treatment.

Every three weeks: 
Bad: 

• too tired to cook so relied on frozen meals and food deliveries from my family and boyfriend. Even making a salad seems like too much effort. 
• losing enough hair make a decent  hair piece
• taking cold showers to reduce hair loss, only to switch to room temperature because it's too cold. Then losing more hair in the process.
• Brushing your teeth with toothpaste that doesn't seem to clean your teeth completely. But it prevents the mouth sores that come with chemo. 
• Getting diarrhea, constipation, or both, depending on how your last chemo session went. (Forgive the blunt description, please.)
• Having your nails turn gray or brown, and it won't go away until my nail fully grows it out.
• No longer being able to use regular nail polish because it has formaldehyde
• Using special sunscreen and soaps / shampoo that is paraben free--and expensive

Good: 

• Not having to shave your legs, etc., shape eyebrows for a weeks at a time.
• Vaginal dryness--it sucks. Thank goodness there are good lubes out there. (sorry for being graphic)
• No birth control. so no glove no love (sorry for being graphic, again)
• Making my boyfriend lift heavy objects and vacuuming so I avoid getting lymphoma (click link for explanation) so I have no feeling and limited use of my arm. That means no blood work, heavy lifting, and careful use of my arm where I had lymph nodes removed for the rest of my life. Plus, tingling in my fingers, arm occasionally.

Week 1 after chemo: 
Bad: 

• Bruising in place where IV was inserted.
• No vomiting but occasional nausea.
• Using heating pads every moment I could to ease constant back pain. I laid on my back the entire three to four days after treatment. A few times I went to  work right afterwards, so I popped Advil like crazy to reduce the pain. 
• Metallic taste in mouth.  And nothing gets rid of it. Everything tasted strange afterwards. 
• Hot flashes through out the night.  I can't get a decent night sleep.
• Too tired to do exercise. My knees hurt too. 
• Chemo brain kicks in. Effects worsen with less sleep,and as the weeks go on. 

Good: 

• No need to shave, wax, or tweeze hair in unwanted places. SUCH a fabulous break.
• No period. What a great break. 

Week 2 after chemo: 
Bad:

• Still have metallic taste. 
• Still aches in lower back, knees, 
• Hot flashes continue. 
• Exhausted at the end of each day of work. 
• A little more energy to go on walks. No high impact exercising. 
• Chemo brain continues.
• Avoid sick people this week in particular because I'm more susceptible to getting sick after getting the white blood cell stimulant shot. This was hard to do when everyone came to work sick and it was the start of flu season.

Good: I remain hairless in hidden places and lack of my monthly visitor continues. 


Week 3 after chemo:

• Intermittent stabbing pain in my breast that makes my cancer breast. It's my boob's way of saying: "Chemo me baby."
• Chemo brain progressively gets worse. I mix up words in sentences, have trouble concentrating and can't remember adjectives or verbs to use in basic conversations.

The hardest thing: 

I can endure all of this. What I could not deal with was losing more and more hair. I lost my eyelashes on my lower eye lid, some hair on my arms and fingers, and thinning of my eyebrows.  That was OK. But I started to lose an increasing amount of hair after each treatment.  By the end of the 12 weeks, I shed every day, even after using the cold caps. I was told it's normal. The shedding can continue for 6 to 8 weeks. What I did not expect is that the shedding would worsen to such a degree. 

Cold caps often work for some people. If I had not used them, I would have lost all my hair two weeks into my chemo treatment. I had some hair left. I am grateful for that. I had kept up the appearance of not going through breast cancer. For some people, it means that they keep up to 80% of their hair. The shedding can continue up to 8 weeks after the last chemo treatment. 

I continue to shed, 6 weeks after chemo.  Each time I shed, a little part of me dies inside. It seems silly to be so obsessed with hair. I've had long hair since I was a little kid. It's part of my identity. 

  

I can't imagine not having it. I had to cut my hair short though so I would not go into real shock when it came out. That would have devastated me more than I can say.  This is a photo of my hair before chemo. 

This is a photo of my hair now that it is nearly 6 weeks after my last chemo.  

It feels like I have shed enough hair to make at least a toupee / hair piece. That is exaggerating, but it feels that way.  I am too embarrassed to go out in public sometimes. I cry each time I have a major shed. I've run out of ideas on how to creatively cover my hair loss. I don't wash my hair more than twice a week because each time I do so, so much hair comes out. I brush my hair once a day, as gently as I can, and still more comes out. My head is so dry that flakes just appear every where (pardon me for being graphic).  This is what I see each day in my sink, along with how much I've lost on the sides of my head. 

I'm worried that my hair "coverage" will become a comb-over at some point.  I can't bear to think of that. I'm tearing up just thinking about it right now. It's wearing me down, every day. 

Each time I shed, I cry uncontrollably. All my boyfriend can do is hold and hug me. He still sees me as beautiful. I'm so blessed to have his support. I don't know how I would get through this without him or my family and close friends. My boyfriend went shopping with me when I  broke down and bought a wig to cover things up. We had a blast figuring out if I look better as a blond or redhead. Once I wear the wig I guess it will bring me out of the breast cancer closet. I can't bring myself to wear it yet. 

Again, I am sincerely grateful for the cold caps. They got me through chemo. It just stinks that the hair loss is just one more factor in this battle. Radiation has been tough on me.  I'm getting to the end though. More to follow on about radiation.