Chemo Day 37: Port-a-Princess?

Yes, finding veins has been a struggle, sadly, even after having had good veins for blood donation all my life. But I really don’t think I WANT a port. ūüôĀ

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My Story Part IV: Time Flies When You Have Cancer

When in doubt, tell the truth. – Mark Twain

After a couple of hours, it was setting in that I really had cancer. While I can keep secrets that could ruin surprises for friends, I’ve never been very good at keeping secrets about myself. I’ve always been an open book. I have friends who have found that trait to be very off-putting, but the fact is that’s how I am. I wear my heart on my sleeve.

As a LIVESTRONG Leader, it’s been drilled into my head that cancer is nothing to be ashamed of – there should be no stigma attached. I’ve been open about so many things in my blog, and I felt that this should be no different. So I wasn’t. I wrote a blog about it. I passed it onto a friend at LIVESTRONG Headquarters who asked me if she could share it with the staff and others. I agreed. And it was shared. Now, it was out there. If I went into denial, there’d be others to remind me. And my obligation of the cured was starting early. I was going to share my story. I was going to make this real, not wrapped up in a pink ribbon with glamorous photos. I’d tell it like it is.

Within hours, I’d received dozens of Facebook messages, Tweets, emails and other notes of support from friends all over the world. And, within those same hours, I was being scheduled for test after test. My calendar was out of control. I had just started a new part-time job working for Danny’s Cycles, I had my full-time job, I was just starting up my Mary Kay business again, and now I have doctor’s appointments, scans, consultations, more doctors than I ever anticipated knowing in a lifetime. And I still hadn’t told my parents and my children.

Yes, I know. How selfishly stupid was I for not telling my parents and children before blogging about it? But, you see, neither they, nor their contacts, read my blog or follow But, I had to do it. At least, I knew I had to tell my children. I didn’t want to tell my parents. It’s the ugly truth, but the fact is that I didn’t want to deal with their insanity, specifically, my mother’s. Flashes of when I was delivering my daughter, and her criticism that I’d chosen to have an epidural, and the fact that she denied my request to bring my son back in time to cut the umbilical cord kept running through my head. The reality was that she would drive me insane with judgements and her opinions of what my choices were, and I didn’t want to deal with it. I asked my cousin to tell them, but she chose not to do it.

So, I picked up the phone and told my dad, who told my mother. And then I arranged dinner with the kids at DiNardo’s Ristorante in Pound Ridge, NY.

Tell the children the truth. – Bob Marley

At an early age, it became painfully obvious that adults had a despicable knack for hiding the truth, especially the uglier truth, from children to “protect” them. What those adults don’t understand is that such consipiracy hurts the children, sometimes scarring them for life, and has less to do with the well-being of the children, but avoiding having to figure out how to explain difficult things. It’s to placate the adults, not benefit the children. My grandmother died in 1980. I was to be at the funeral, with my cousin, so we could say goodbye to her. She had fought cancer, and her time ran out. She was the most revered adult I had in my life. She was everything to me. I distrusted other adults as it was, and, at her funeral, that distrust was confirmed. Someone outside the family decided that it was inappropriate for my cousin and me to be at the service, so she tricked us into going to a classroom upstairs in the facility and locked us in for the duration of the funeral. Our parents didn’t realize this had happened, and no one came to get us until after the service was over. We missed everything. We never got the chance to grieve, to see her casket, to share our loss, etc. We missed it all. And neither of us have gotten past that.

I wasn’t going to lock my children in a closet. I wasn’t going to do to them what was done to me.

The good news is, as I’d been a LIVESTRONG Leader for a couple of years, they had plenty of exposure to what cancer is, survivorship, etc. My son had gone to the LIVESTRONG Challenge in Austin the year before, so he’d seen, hands on, how many make it through the other side. I just had to convince them that I’d be one of the many collecting the yellow rose with the “I Am a Survivor” bib on my back, and they wouldn’t have to wear the bibs that read, “In Memory Of.”

Once dinner was ordered, we all sat down, and I told the kids that I’d been diagnosed with breast cancer. My son asked me if I was ok. My daughter’s eyes began to well up with tears and she hugged my right arm and pressed her face under my arm. I stroked her cheek and told her it was found really early and not to be worry. I told her that I was a little scared, but I was stronger than I was afraid. My son came over and hugged his sister and told her it would be ok. We described all the riders and runners we’d watched collecting their yellow roses as they crossed the LIVESTRONG Challenge finish lines, that this was caught early, and it would be alright.

I reminded her of the Arthur episode that the Lance Armstrong Foundation did called “The Great MacGrady,” (search for The Great MacGrady in the search box on PBS Kids to watch the episode online) where cancer was described as a weed in a flower garden that needed to be plucked out, and sometimes you had to use weed killer to make sure it never comes back. I told her that in October, when we went to Austin, she’d see hundreds of cancer survivors and that I’d be joining them. I explained to both kids that I’d be having the surgery while they were at camp, but that I’d let the camp know all about it and make sure that if they needed to call to make sure that I was ok, they could. (Note: The camp didn’t exactly comply – I had to fight them to let that happen, as well as other issues related to the cancer that I should not have had to explain more than once, let alone fight repeatedly.)

By the end of the evening, though I can’t say we were “alright,” the information was given, it was being processed, and it was clear we were fighting this battle as a family. My son was going to be “Man of the House” and agreed to keep his nose clean and do what he had to do. My daughter was going to be my “Lady in Waiting,” and pitch in where she could, and I was going to fight like hell.

Look for me in the whirlwind or the storm. – Marcus Garvey

It’s remarkable how much stuff has to get done in such little time when your diagnosis comes in. My thumbs could not keep up with all of the appointments I had to make. I had to meet with a breast surgeon. I had to go to radiology. I had to get an MRI. I had to get my family to give me the family cancer history once more. Sure enough, there was a pattern on my father’s side, which meant I had to meet with the geneticist. I had to meet with an oncologist. I had to solve the conflict in the Middle East. All in, what seemed to be, a matter of days. At the same time, I was trying to make sure that I was seeing the best practitioners that I could. And that insurance would cover it. And, oh yes, try and work.

The following 2 weeks were filled with scans, tests, running all over the Stamford area from the Tully Health Center to the Stamford Hospital to the Darien Tully Center.

A quick detour about that trip. If there is one thing that I have taken away from my involvement with LIVESTRONG it is to fight like it’s nobody’s business (because it’s not) when it comes to getting what you need. You know your body better than anyone and it’s your cancer, not theirs. Even the best health professionals miss things and you, and only you, know when something is “off.” They may be able to figure out what it is, but unless you are a clinical¬†hypochondriac, follow your instincts when something doesn’t feel right or the doctor is really not in the right. I keep kosher, which means that I don’t eat shellfish. That being said, the one time that I accidentally ate a dish with shrimp in it, and it was the entire bowl and the shrimp wasn’t revealed until the very end, I had an allergic reaction. It wasn’t lethal, but was uncomfortable. My lips and my throat swelled. Not to the point that I was in respiratory distress, but clearly, I needed to avoid shellfish. However, I’d had several MRIs using the standard dyes. As a precaution, however, my doctor decided to prescribe me steroids.

Now, I already take steroids for my under-performing adrenal system. So these are additional steroids. CVS on High Ridge Road in Stamford, gawd bless ’em, has screwed up every single prescription I’ve ever called into them. This was no exception. The instructions given to me did not match what was in the bottle. however, this wasn’t discovered until I showed up for the MRI. So I had taken less of this prescribed steroid than desired, however, I was still taken steroids additionally. Not to mention the fact that I’d never had an issue with the MRI dyes before. They told me it shouldn’t be an issue, and I went to the back to change. Bear in mind, that I has taken enough steroids to be in “‘Roid Rage State.”

As soon as I was ready for my MRI, I was told my a nurse that the radiologist decided that since I hadn’t taken the steroids as prescribed (inferring that I had done something wrong), that they wouldn’t do my MRI that day. Here’s the problem: Tests like the MRI are just a domino in the scheme of things. When one test doesn’t get done, then the rest of the dominoes fall and you have to start all over again. I had pending appointments out of state with experts, I had a string of follow up appointments, and a deadline by which the surgery could happen before the kids came home. This was not acceptable and I asked to speak to the radiologist. I offered to sign waivers. I pointed to my past records of MRIs with no problems. The nurse told me the radiologist would come out to speak to me. I got on the phone with the Nurse Navigator, my Primary Care Physician, my OB/Gyn, telling them what was happening and to get the radiologist on board. The nurse returned, and I was in full out rage state. She said that the radiologist left. At which point I blew my gasket. I mean, I lost it and I started screaming at the nurse to get this done, turn her back around, etc. I asked where the radiologist was going, and she made the mistake of telling me, “Stamford Hospital.” I said, “Thank you,” got changed and into my car and high-tailed it down I-95 (miracle I didn’t get pulled over!) and parked at the hospital.

Fortunately, my aunt had been a Lab Supervisor at the hospital for years, so I know my way around the bottom floors and backways of Stamford Hospital pretty well. As I was sure the Darien Tully staff had alerted Stamford Hospital that a roided up lunatic was en route and to expect a large, pumped up green lady with shredded clothing to charge through the halls, I decided to take every backway that I knew down to the basement level without being seen by security. It worked. A little patience and a smile, and I was inside, past the security doors. Wouldn’t you know, the first door I stumbled upon was the Head of Radiology’s office.

I charged in, smiled, as the gentleman was on the phone. He looked up, nodded at me, and indicated that I should have a seat. As he was on the phone, he looked at me up and down, nodded again, and said, “I’ve got it.” Yes, indeed, Darien had alerted Stamford about me. He got off the phone and asked, “How can I help you?” As calmly as I could, I explained what happened, and that the test had to happen today because several key appointments were contingent on the MRI results being turned over within 24 hours. I explained that I know my body, what I can and cannot tolerate, and that it was completely unprofessional and wrong for the radiologist to hide behind her nurses and not speak with me directly. He nodded his head in agreement and said, “Let me see what I can do,” and he left the office telling me to stay put. I was 100% certain that the men with the butterfly nets were on their way.

Instead, his assistant, who looks a little scared, comes in and explains that the doctor has run out to the parking lot to physically stop the top breast radiologist from leaving to come back and to perform the MRI at the Tully Center in Stamford. She asked me to hold tight, breath, and relax. She understood, as did her boss. Sure enough, the doctor returns and tells me to head over to the Tully Center for the MRI. And that’s how I got the MRI done.

Thanks goodness, the rest of the tests did not require such drastic means. In fact, though they were crammed into the few hours of the day like sardines, the tests went on as planned. Except for one…

The long and the short of it… Wig Shopping Tips & Resources for Chemo Patients

Contrary to popular belief, breast cancer doesn’t necessarily mean that you will lose your hair, that you will be flat as a board, or look any different than you do today. If you are lucky, and only require a lumpectomy and nothing else, you may only have a couple of scars and maybe some dimpling in the affected breast. I had a double mastectomy, and I opted for immediate reconstruction, which meant the ¬†reconstruction process began the moment the breast surgeon removed the breast tissue from below the skin, most people who look at me at first glance can’t even tell anything is different.

But you may, like me, find that you don’t think you’ll have to deal with chemotherapy, but the pathology and further testing of the cancer calls removed may prove that chemotherapy is still prescribed. A lot gets taken into consideration behind this decision that you and your oncologist will discuss. It may have to do with the aggressive nature of your cancer, likelihood of it spreading, age, health and lifestyle before the cancer, Oncotype scores, and other factors.

A few tips when it comes to picking out wigs that I’ve gathered from the amazing women and volunteers at the organizations listed below, friends, survivors and others:

  • Talk to your insurance company before you even start looking at wigs. Some insurance companies will reimburse you fully, others will not. Ask if there are deductibles, or limits.
  • Get a prescription for a “full hair prosthesis” from your oncologist. Some wig shops will accept the prescription and bill your insurance directly, others may not. However, you will need that prescription before you purchase your wig for insurance purposes.
  • Go wig shopping before you lose your hair. This will give you, and those assisting you, an idea of what you look like with your hair to help you find a wig to match your natural hair.
  • If you do go before you lose your hair, understand that the wig will fit you differently once you are bald.
  • Go with a friend, family member or someone whose opinion you respect. Sometimes, you may find that the best wig for you may not match your real hair.
  • For those of us with curly hair, given some of the maintenance issues and tendency for wigs to tangle, consider a straight wig or a wig with a slight wave.
  • While bangs can cover our foreheads and brows to help hide the fact that we’ve lost our eyebrows, consider that our facial skin may be more sensitive due to the chemotherapy, and the fringe may irritate your eyebrow area. Don’t avoid bangs, but carefully consider and feel how the bangs fall on your head.
  • If you have pale skin, a light wig may help hide the fact that you’ve lost your eyebrows. The lighter the hair color, the less likely you’d have dark eyebrows.
  • Opt for synthetic hair vs. real hair. Not only will that reduce cost, but the maintenance needed is much simpler. And, given the technology and wig makers today, there isn’t much difference between the two. They are also lighter and more comfortable.
  • Try on wigs in hair styles you’d never consider with your natural hair! Use trying on wigs as your time to experiment. Who knows? You may find a new style that you’ll try once your hair grows back!
  • Play! Get a wig that is your dream hairstyle! Always wanted to be a platinum blonde? Now’s your chance! Always wanted to be a red head? Go for it!
  • Listen to the stylist helping you. They have the most experience with wigs.
  • Expect to spend anywhere between $150 and $400 for a good wig.
  • Avoid “costume” wigs. These wigs are good for Halloween, costume parties, or the occasional evening of intrigue with a special friend. Not to wear for an entire day. The manner in which they are constructed are not comfortable for wearing for hours, or against a bald head.
  • Get wig stands. Don’t leave the wigs in the box or use a mannequin head. The wig stands are made to allow the hair and wig to breathe and hold their shape. Mannequin heads and other solid stands will not allow the hair, nor the lacing, to air out after wear.
  • Pay attention to the wig’s care instructions. Some wigs can withstand heat, others cannot. You don’t want to accidentally melt your new ‘do!
  • Ask the shop/salon you are going to if they accept insurance. If not, they will give you a receipt that you should be able to submit to your insurance company.
  • See if styling the wig is included with the purchase. Some wig shops have arrangements with local stylists to include a free, or discounted, wig styling appointment with the purchase of a wig for chemotherapy. If not, call your local salons if they offer special discounts for chemotherapy patients’ stylings.
  • Do not get your wig styled until you have lost your hair! When you have hair, the wig sits differently on your head. Getting it styled beforehand can result in a permanent bad hair day!

Resources for free wigs for women who qualify:

This was the first organization that I contacted regarding a wig. The ACS locations have a vast selection of wigs to choose from, and a staff member will help you find a wig to suit you from what they have in-stock. Bear in mind that you need to go to the local ACS office (in Westchester County, it is in White Plains – be prepared to bring quarters for parking!). I, personally, was really impressed with the variety of high-quality wigs, brand new and lightly used (but sanitary) that were available to choose from.
  • Y-Me National Breast Cancer Organization Free Wig & Prosthesis Bank:
    In addition to offering the products, Y-ME offers wig care and styling tips, along with 24/7 support. Affiliates throughout the country facilitate local Wig & Prosthesis Banks, often with salons where women can try on items before taking them home. If a salon or Y-ME affiliate is not in your area, you can tell them your hair color and length, and they will try and find a wig that suits you. Unfortunately, in my case, there wasn’t a wig in stock, as they are dependent entirely on donated wigs and what they have in hand at the time. However, they are quick to provide additional sources for wigs for those going through chemotherapy!¬†Y-ME is able to provide all programs and services free of charge.¬†Call the YourShoes 24/7 Breast Cancer Support Center at 1-800-221-2141 to speak with a peer counselor about receiving a wig or prosthesis, and learn more about selecting and wearing a wig or prosthesis.
  • Crickett’s Answer for Cancer:
    My Crickett's Answer for Cancer Wig

    My Crickett's Answer for Cancer Wig - Light, good for everyday and under hats

    Crickett’s Answer for Cancer is a registered 501 (c)(3) breast cancer non-profit, providing cost-free wigs, mastectomy and lymphedema products, and pampering services nationwide to women with breast cancer. The story behind Crickett’s is very simple: A mother’s love for a daughter who lost her gloriously thick, curly head of hair, and her life, to cancer at too early an age. There are many organizations out there to provide support for women fighting breast cancer, but Crickett’s touched me deeply. Bonnie Julius, Crickett’s mother and founder of the non-profit, took so much care and time speaking with me over the phone and online to make sure that I found a wig that made me happy that it was clear that she “adopts” each of us 400 women that have been helped as her own daughter during the time she has with us. I don’t ordinarily ask in this blog for donations on behalf of an organization, but if you have wanted to give to an organization that makes an impact to women fighting breast cancer, this small, but effective non-profit, needs help.

    You see, Bonnie doesn’t collect used wigs or donated wigs. She works with to allow the cancer fighter to choose their own wig. There is a budget involved, but it’s a generous budget. And she gives fantastic advice about how to treat your scalp, what to and what not to do, materials, wig types, etc.¬†None of their officers, committee members, or volunteers receive any remuneration.
    Crickett’s Answer for Cancer has ¬†assisted approximately 175 women through the end of September so far this year and a total of approximately 400 clients during our 3 years of being a non-profit.¬†In order to do that, of course, Bonnie and the others at Crickett’s need funds to pay for these wigs.

Chemo Day 27: Amazing what some swelling can do…

Chemo is delayed even further. Am I going to be admitted to the hospital or not? Magic Eight Ball anyone?
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(Can you tell I’m still getting used to wigs?)

Chemo Day 20: Fatigue & Morning of Gilad Shalit’s Release

Is it the wrangling of the little uns? Having run in the 5k? The pitiful attempt at riding Sunday? Or the chemo? Who knows, but I am BEAT.

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Chemo Day 19: Wrapped up with a pretty bow

Wrapping up the LIVESTRONG Challenge Weekend…
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