Hair loss and Hair Wash

Hair loss with chemotherapy is a curious thing: it comes off in random areas at random times and in random configurations -- at least it seems so to the naked eye.

When I first started with the hair loss I first lost hair in the lower extremities like my legs; within the legs it started from the top, then fanned outward. The lower limb started its loss in the middle then fanned outward. It did the same thing on the head -- but it started in areas you typically see men balding first (the top of the head and forehead) then it fanned out to the ears and neck. Hair loss happened in one underarm pit but not the other. And now, in the end of this third cycle eyebrow loss starts at the area above the nose or nose bridge then it's fanning out to toward the ear BUT it's starting in the opposite direction with the lashes. With lashes the loss is starting closest to the nose then moving inward.

One has to wonder what is in the chemo cocktail to render hair loss so strategic less in appearance. I bet it would look so interesting if we could see through our veins and see the recognizance mission. Meaning behind the madness surely must exist -- or I wonder if it's like anaesthesia in that doctors know it works but they don't know why, really. There's a faith that the right cells in majority are being targeted but the innocent bystanders might strategically be at the wrong place at the wrong time.

In any case, I've now learned gradually over these past months how to wash the straggler hairs and surface below these hairs (when I shaved my head before Chemo kicked in I had stubble; since I'm hairy to begin with my stubbles grew fast and these flicked off my head once Chemo was in full throttle. For each cycle my hairs would seem to grow a bit in week three then they fall off again in weeks 1-2 of the next cycle).

Initially during my showers through my first couple of 21-day chemo cycles, I lathered the areas of existing hair as though they were fragile porcelain claymation-like fibers ready to break on any insult --- INCLUDING blowing wind. I was slow, not really fearful yet somewhat. I was like the scientist excavating fossil from some anxiously awaited dig. Then with time it was like my hand met hair which fell out as I lathered it and it subconsciously said "oh, I guess it's your turn to fall off." when the hairs were all off my heady lathering hands were like "ooh, is this where the hairline ends" as if my hands were going to fall off a cliff if they crossed some imaginary line. Today, I wash all areas of my head, face, ears, neck with organic excellence shampoo as if all one unit. It's taken time to get to this point because it just was not part of my regular routine. Despite the old saying, I CAN learn new tricks -- it just takes longer;)


Note in photos: below is a full face-head picture of me yesterday; another is just of my scalp with newest hairs coming out mostly frizzy and white which tend to grow in week three of chemo then fall out in week 1 of next cycle; the baby pictures are of me day 1 and 3 -- I've never been bald so it's really a new experience :)

Angelina Jolie's Double Mastectomy

On Mother's Day, Angelina Jolie wrote an article for the New York Times regarding her recent double mastectomy. See her article at link:

http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0

In this article, Jolie discussed BRCA1 and BRCA2 genes, her family history, the mastectomy and reconstruction all in an effort to educate and explain her personal reason for undergoing this process: to buy time with her children. Opinions vary on this topic -- but because she is a woman, it's her body, it's her options she's weighing without need of public scrutiny, it's her decision then-- for her -- it was the right decision. A mastectomy is no walk in the park; she is brave in choosing this route. But this approach is not for everyone. And, she is not advocating that women do what she did.

I applaud her in raising awareness the mastectomy, reconstruction, and the currently known genes that have been linked with breast cancer.

What I hope the media does with this information is further the awareness of breast cancer, the genes linked to certain cancers, and the reconstruction process -- especially in an appropriate way. I would hope that empowerment and not sensationalism is the goal.

For instance, if a parent has breast cancer then the child or children of that parent has an increased risk of getting breast cancer -- but this does not mean the message is to get a mastectomy at any age, like 12, 18, 21, etc. Other things go into the equation. Age, age the mother died with breast cancer, density of the breasts (if BRCA positive and the woman has dense breasts then it might be harder to catch using just mammogram), personal feelings, etc.

In talking about breast cancer as Venn Diagrams then if we draw three Venn Diagrams overlapping it would look like this: one big circle is all women with all types of active, invasive or aggressive breast cancer; the second big circle is all women with no breast cancer; the third is smaller one of all women with the BRCA gene of which applies only to women of a certain Jewish ancestry. The overlapping portion of all these three circles is women with breast cancer. So, if a parent died of breast cancer and did not have the BRCA gene, then it does not mean the child of that parent will get breast cancer. It applies only to the population of that smaller circle of the Venn Diagram -- and even within this smaller circle many factors are weighed when considering a preventative mastectomy. Different decisions are made depending on the circle one applies to; but in all cases or all circles of the Venn Diagram then all should monitor one's health including getting regular breast exams.

If a woman has the BRCA gene -- the one gene so far that has been identified as a linked with breast cancer- then we know for certain that a person's chance of getting breast cancer is 87%. That applies to subcategories of BRCA which one might see as BRCA1 or BRCA2 genes. A mutation here causes certain cancers-- like cancers in the uterus and cancer in the breast. This is what Angelina Jolie has. This is what her mom died of. This is what she had to weigh in her decision to have her breasts removed when no cancer is currently found. For her, factors like her age, the age her mother had her aggressive and invasive cancer, the amount of children she currently is a mother to, etc all weighed in her decision to take this route. Again, it was a good decision for her because it was her decision. The percentage of women having these particular BRCA genes is very small but if within this group a person must weigh several factors like Jolie did.

But in terms of the general public I hope the media educates us in sharing info about breast cancer, reconstruction -- and as far as genes are known in the breast cancer world -- how small the BRCA gene percentage is. In fact, it is so small that when I had my genetic test for the BRCA gene my doctor said she'd bet I didn't have the BRCA gene based on my ancestral history (no link to Jewish history or Middle Eastern countries with this particular Jewish history). The genetics test is an easy one in which you spit into a container (many genetic tests are available in this format nowadays). Sure enough, I tested negative for the BRCA genes.

An analogy to the BRCA breast cancer link is Autism Spectrum Disorder (ASD) and known genetic links. A child with ASD may have a known gene that has been linked to ASD (not caused, but linked); he or she may have a gene that is linked yet has not been discovered yet; but overall, when diagnosed, the doctor either knows of the gene that is linked with ASD or gies simply by the child's behaviors. The diagnosis is made by known genetics or by known behaviors. In my son's case he had signs of ASD but a gene linked to his ASD was not discovered until he was 4. There are now many genes discovered by scientists as being linked with ASD. Overtime, more will be discovered. The same thing can be said about genes and breast cancer. It just so happens only the BRCA has been 'discovered' but I'm sure in our lifetime more will be found.

Now let's say one did test positive for the BRCA gene and did not currently have breast cancer, then it does not mean that one would be recommended a mastectomy. Nor does it mean that one would be recommended a mastectomy because a parent who had the BRCA gene who died of breast cancer. The recommendation is to be proactive in monitoring one's health --- like in getting regular screenings including screenings now done for women with dense breast tissue (next level magnification mammogram, ultrasound, and yearly screens regardless of age). And, weigh in the options like age, age of parent with BRCHA gene when breast cancer was discovered and died from it, as well as other issues. It's a complex problem involving complex factors for decision making. That would be the message I would hope the media passes on to the public; that would be the message I'd want to pass on to my child.

Mother's Day

This was my first Mother's Day as a breast cancer fighter and I savored every ounce of the day. For me, it meant not rushing, looking around at my environment, taking in all the glorious living things -- like flying birds, blooming flowers, green trees of different sizes and shapes. For me, I wanted to record this day in memory as a day I appreciate all mothers who gave life and nurture life. And I definitely feel so grateful in being allowed the opportunity of being a mom -- I love this part of my life.

On Mother's Day we woke up and went to the beach to run. We then went and had breakfast at our local health food market, then we drove down the coast to take in the scene. Gorgeous day. It was truly the best Mother's Day ever.

Official Halfway Point With Chemotherapy and Final Stage 2 Reconstruction

Women can multitask: it's what we know, how we are wired, how we function. Sometimes it's too much, and at other times it's what we can handle given other circumstances or variables. It just so happened that my window of opportunity coincided with simultaneous breast removal and breast reconstruction. So while one surgeon removed my breasts for stage 1 of cancer treatment on February 20, 2013, in that same surgery another surgeon started the phase 1 or treatment of reconstructing my new breasts. Multitasking.

This past week, on Friday, we completed stage 2 of reconstruction. I'm happy with the amount of saline solution that has been pumped into the balloon -- a.k.a. Spacer -- that was surgically attached behind my pectoralis muscle. This was done over five sessions of saline solution injected into the balloon through my pectoralis. Sounds more scary than it really is. All my nerve endings were removed with the mastectomy so I didn't really feel the injections. The pressure afterwards I feel but that gets better after a few days. I always think braces. Instead if teeth its breasts. In any case, I'm done and I'm happy I went through this process. Stage 3 reconstruction now happens 6 weeks after my last chemo session finishes - so I'm right on target for an early August surgery with recovery through Labor Day as I told my son. It's a season. Valentines to Labor Day -- then life normalizes to my new normal which has pretty much been happening all along the way.

As for chemotherapy, tomorrow I am almost there. I should be done by end of June which is right around the corner. I'm currently done with my session 2 and tomorrow is session 3. So far all hair officially off on head and lower extremities. The arms, brows, lashes still holding on but signs of falling out are here. Same with toe nails. Currently I have a black ring on each toe nail and as for my fingers, my left thumb nail has a black ring. Fatigue Upped its ante this time around but extra sleep and naps helped. Chemo brain has also shown up but it comes in waves so I now write memos to myself on my iPhone notepad. Neuropathy is showing up but when my hands and feet start to tingle i take Lysine, B6, B12 and extra calcium which seems to do the trick for me. All these things are temporary for many women. Again, it's just a season with my eyes on the prize at the end of this season: cancer-free-survivor status. Worth it in every possible way.

My session tomorrow, May 8, 2013, starts at 930am and Ill be there all day. Thank you for keeping me in thoughts and prayers during this season. Big hugs to you all!

PS. Normally I go into chemo on Tuesdays during my cycles but we had to change for my husband's work schedule. Doctor said a day delay is fine. So will either keep old or new schedule for final session. Depends in what doctor says tomorrow.

Pss. Though impromptu, low-key and last minute plans, we savored our little boy turning 8 and our 13th wedding anniversary.

More photos tba....

Bumpy, Lumpy Breasts? California's New Dense Tissue Law

Earlier this year I blogged about my dense breast tissue -- I naturally have bumps and lumps that are non-distinguishable on self examinations or mammograms. In fact, mammograms don't pick up tumors on such breasts that make up 30% of the female population. Unfortunately when tumors are discovered it is late and even too late.

I was fortunate that the technician who performed my mammogram was privy to the then upcoming law which splashed the news in the fall. By the time I had my mammogram with her in January 2, 2013 she was aware that the routine mammograms I had been receiving over the years were missing hidden tumors. The only way to visualize such tumors is with a next stage, high intensity mammogram plus ultrasound. This technician that I had on January 2 dragged the radiologist out of his office to see my mammogram and suggest these better screening techniques. If it were not for my friend who needed a mammogram to which I tagged along AND this astute and gift-of-a-technician I would not be here. My grade cancer was a 9/9 level of aggressive and invasive. This means that within 30 days my cells divide and invade other tissue. By the time I'd schedule another routine mammogram a year or two later my cancer would have taken over other parts of my body and my chances for survival would not have looked good.

I write this in hopes of steering all women with dense breast tissue regardless of age or recent exams toward the newest protocol and law: your breasts will not benefit from self examination or mammogram only. You need the second level mammogram plus ultrasound which is now law in California effective this month -- April 1, 2013. Any doctor who tells you otherwise is breaking the law. This is the case whether you are 20, 30, 40; the old advice of waiting til 40 is gone if you are among the 30% female population with lumpy bumpy breasts. Schedule your appointment. Your life depends on it.

First Reconstruction Bra

Since my mom bought my first training bra back around middle school, it seemed only natural for her to want to buy my first bra of reconstruction.

I've been going through reconstruction while also going through chemo. Roughly every 10-14 days I go in to the reconstruction surgeon for am injection of fluids into my chest. My "chest" means my sparred skin, pectoralis muscle, then balloon behind this muscle they call a spacer. The spacer has a valve on it which a needle with 50 cc of saline solution penetrates in order to expand my pectoralis. The end "look" is a boob.

It's surreal. It looks like a boob -- but I don't feel the boob. In fact it's like this foreign mold on my chest that doesnt bounce like regular breasts. But it's neat in that I can have something like this. I have boobs. The balloon ridges can be seen now which is a good reason to wear a bra. I may have also found my boob size of choice (with reconstruction you keep going until you are happy with a size. You go inline more time after this choice size so that the surgeon can chisel out skin for the actual implant. The balloon gets swapped for the implant at a future surgery which must wait 6 weeks after chemo end for healing purposes.)

Since my mom was in need of a new size bra and I was in need of my first reconstruction bra we went shopping together. It was fun, relaxed. It was a bonding moment and a moment of getting something pretty. As someone who hasn't done this in years since jog bras have been my choice of comfort, it was quite the experience in seeing the technology changes over the years. I went in initially trying to find out what size I am -- but this was kind of challenging since everything had pretty substantial inserts. A 34A was really not a 34A with half the bra filled with a pillow of sorts. It took a while to find a bra without the pillow. When I finally tried on pillowless bras, I then had to look inside the cup to see if my "boob" filled it up since I can't feel anything. I felt middle school ish with my attempts of finding a bra -- but it really was heartwarming and a great experience to find things that fit and feel good and look good! A transformation of sorts. Very similar memory to my first "training bra" -- and having my mom there was pretty special.

Surviving Chemo Round 2: Food Poisoning or Chemo Effects?

My first round of Chemo came after taking a cumulative exam for graduate school that covered 3 years of work plus 3 years of prerequisites. Though my labs were normal, my blood pressure and heart rate was a little higher for me that first day of Chemo. I guess these vitals are a good read of the body and life circumstance. (addendum: Just found out today that I passed my graduate exams!!!!!! I get to graduate on May 21, 2013. Back in January I didn't think this would be possible due to timing. But so so very grateful that the window between mastectomy and chemotherapy allowed me the time to take these exams. Relieved and so happy).

For this second round of Chemo, my labs definitely showed the effects of Chemo -- white blood cells and red blood cells were both low. Expected. Chemo is supposed to break the body down like that in order to rid cancer BUT the good news was that my blood pressure and heart rate was back to normal athlete-like states. This is huge. These can impact overall effects.

Chemo went well. In fact, no problems at all. And the overall day went well. There was, however, one two hour period that felt like I was in the undertow of a wave. Fetal position, aches, moans, tears...I was experiencing cold sweats, shivers, nausea, vomit, constipation and diarrhea all at the same time. This is what was common back in the day. But today these effects are more controlled. In my case, there are two great reasons why this happened and are now under control:

First, I miscalculated the amount if steroid I needed to avoid these effects. The day before Chemo one is supposed to start steroids. I did this -- but took only half the amount needed by accident. I misread "2 tablets twice daily starting the day prior to Chemo" as two tablets total -- I took 1 tablet twice that day. Then I thought steroid would be in my IV like last time. Wrong. I was supposed to take two tablets that morning of Chemo -- which I didn't . The result: my body had a hard time processing the Chemo without the right amount of steroid, hence the horrible two hour inner tsunami. The good news: I'm back on schedule and my body feels great.

The double whammy is that I also got food poisoning from eggs. So, both Chemo and food poisoning played hard ball together.

Again, in the grand scheme of things two hours out of 24 is a blessing. It could have been worse. I still had 22 wonderful hours. In fact, my husband and son got to watch initial set up for the day. My 7 year old son asked so many great questions and told me I was brave. That alone warmed my heart throughout the day. And all family and friend words of encouragement and prayers helped me stay strong.

Thank you from the warmest part of my heart!

At chemo set-up...

Mommy and Son Chillin' after a long but great day.

My son getting a kick out of Mommy's Chemo Infusion Machine (a.k.a Pirate Ship Producer Machine)