Thursday, August 25, 2011

Resources for Cancer Patients

I spent hundreds of hours looking for resources that had valuable and reliable information. There is a lot of opinion 'out there' so make sure, especially when reading information online, that the information is from a reputable source. I found the following resources to be helpful especially when I was trying to understand this disease and my options, but remember don't make any decisions without consulting a doctor or your cancer team. I was looking for a list like this when I was first diagnosed and I couldn't find one so why not try to make one with resources that I've used? - If you are reading this blog, you have obviously discovered this website however, this website is different than any other website I have discovered because it focuses on the individual. It recognizes that each person's diagnosis is different but that we all share similar experiences and difficulties. This is the only site that I have found that talks openly about issues like vaginal dryness, sex after cancer (or in my case, during chemo), and at the same time has threads on the forum like Music Monday and eating properly, etc. This website focuses on the person not only the cancer and I think that's one of the hardest types of resources to find. It allows people to discuss openly and honestly about however cancer has affected them.
This is an essential website for young women facing breast cancer. It wasn't until I found this website that I realized that not only was I not alone, but that there are so many other young women like me facing breast cancer. This is from their website, 'Launched in 2001, Rethink is the first-ever, Canadian breast cancer charity to bring bold, relevant awareness to the under-40 crowd; foster a new generation of young and influential breast cancer supporters; infuse sass and style into the cause; and, most importantly, respond to the unique needs of young (or youngish) women going through it.' Love it! (American) (Canadian)
These are websites that support young people dealing with cancer. This was challenging to find; I could find a lot of information on breast cancer but I couldn't find a lot about young women with breast cancer. Women diagnosed with breast cancer under 40 are not represented in much of the literature or research that I could find. Even the pamphlets, etc. that I can find at the hospital, all have pictures of women over 50. It makes it difficult to relate...
This is a great forum for anyone facing cancer (either as the patient, caregiver, spouse, etc.). You can ask any cancer related questions and this website is set up to have the most qualified member of the website answer that question. From their website, 'We are a welcoming and caring community that has come together to meet, share, and learn with each other. We welcome patients, families, caregivers, survivors, professionals, and organizations. All members are encouraged to share their unique knowledge and experiences. The more we share, the more people we help.' (Canadian Breast Cancer Foundation)
For everything breast cancer. They have a lot of specifics about symptoms, side effects, treatment, day to day issues, etc.
This is the Canadian Cancer Society's website and it answered a lot of questions early on. There is a lot of general information about all different sorts of cancer. This website was useful for some of the things my medical team didn't tell me like, to get a pap-test and a dental check-up prior to starting chemo. Your vaginal cells can change while in chemo and it's good to get a baseline just in case and if they find a cavity in a tooth after chemo starts they can't work on it due to possible infection. These were simple things that I didn't know prior to being diagnosed with cancer.

Your PDN - Your Private Duty Nurse is there for you. After treatment #2, I was pretty sick but I thought that vomiting, not sleeping, and constant nausea for 48 hours was just part of chemo. I waited 2 days before I called my PDN and I should have called after 2 hours at the most. Within 4 hours, I was hooked up to an IV at home to hydrate me as well as give me anti-nausea meds intravenously too. Your medical team is there to help you get through chemo with the least amount of discomfort as possible so use them.

Your Pharmacist- I have called my pharmacist on a number of occasions to ensure that certain medications can be taken with others or to verify that certain meds cause certain side effects. Don't be afraid to call a pharmacist to ask questions about your medication if you feel uncomfortable calling your PDN or oncologist.
Whenever you have any questions about your prescriptions you should always advise your PDN, pharmacist or doctor. However, I found these websites helpful when I was looking up quick facts about new prescriptions and their side effects, doses, etc., I used it as a verification tool.
Each cancer is treated with different chemo cocktails. If I'm not mistaken, the patient's cocktail is determined by the type of cancer (so in my case, breast) and then also the make-up of the tumour or cells. I had a cocktail called 'FEC' for treatments 1-3 and 'Taxotere' for treatment 4-6. I found that this website answered some questions about each of these treatments. So much of my fear prior to starting chemo was the unknown and this website was able to answer some of those 'unknowns'. I found that when my oncologist asked if I had any questions, my mind would be overwhelmed with new information so I didn't have any questions at the time and then once I got home, I couldn't get enough information about it. A lot of the different chemo treatments are listed on the left side of this website's page so if you aren't getting FEC or Taxotere, it doesn't mean that your treatment isn't on this website.
I need an injection once every treatment that costs $3000 each. Keith's plan covers 80% but that leaves $600 out-of-pocket. The Victory Program covered the outstanding cost of $600 so the $3000 injection that was going to put us into debt ended up costing us $28 each. It's an incredible program. Ask your oncologist about this program if you require this injection (there are a few different injections that this program covers but mine is called Neulasta). It's used to increase your white blood cell count during the days when you are highly susceptible to infection. Direct phone number is 1-888-706-4717.

* Don't be afraid to call your insurance company too. They cover things like wigs, mastectomy bras, and other 'stuff' you may not expect. A phone call never hurts.

PICC/Port/IV- Be aware of your options. From what I know, most chemotherapy is administered intravenously and depending on the the number of treatments you need, along with the limited access to veins that one has, one of the three options are chosen. In my case, I am petrified of needles so although the insertion of a PICC line caused many sleepless nights and too many tears, I chose it because it didn't add the anxiety to every chemo treatment, instead it was all over with one procedure (and I would do it again). Also, because I had lymph nodes removed from my right arm so, I will never be able to have an IV put in my right arm ever again (that is the 'limited access' I was referring to above). The PICC line is inserted into your arm using an ultrasound machine and guided up your arm through a vein into a larger vein that leads to your heart. My PICC line is 53cms long. It's not pleasant to think about but I can't feel it. A PICC also requires a lot of care; homecare comes to my house twice a week to change dressings and sanitize the area on my arm. For the record, there is no where that says you can't get an IV every time you get chemo, it just wasn't the right option for me.
I don't know a lot about the port but from my understanding, you get the port (it's inserted under your skin in your chest and is a minor surgery) when you are going to be in chemo long term. For example, during my first treatment, I met a woman who had been there every three weeks for a year and a half and she had a port. I think when you are HER2 positive they recommend a port rather than a PICC. Keith and I had lots of questions about chemo's effects on fertility and I found the following sites helped answer some of these questions. We were lucky enough to get referred to a fertility doctor prior to the start of chemo and although we learned about some options, if you are of reproductive age, be aware that there are many unknowns when it comes to chemo's effects on fertility so ask questions. For example, In Vitro was an option but because it requires hormone injections to over stimulate your ovaries in order to extract eggs and my cancer is hormone based, there wasn't enough research (to satisfy or convince us) that it would have no affect on recurrence. We didn't feel like there was definitive proof that it had absolutely no chance of increasing my odds of recurrence. There's no point in planning for a baby if I'm not here to have it. That's not to say that there aren't studies on women with breast cancer who have chosed IVF but there wasn't enough research for Keith and I to agree to go ahead with it. Our thought process was, at least we know the outcome (although it could mean that we can't have children) if we don't pump me full of hormones but there are so many variables and uncertainties with hormones and cancer if we were to use hormones.

Mastectomy Shop
- I went to a local, independent store where the owner was incredible. She was very knowledgeable and helpful. She helped me pick out the appropriate post-surgery bra. I know it may be a little intimidating to walk into a mastectomy specific store because every one knows why you are going in there (assumingly it's the same feeling as walking into an 'adult only store' - not that I would know) but it's so worth it. I went to 3 or 4 stores prior to feeling comfortable with the stock and the salesperson. So much of cancer is out of our hands and uncomfortable so when you have some say in the matter, make it count by shopping around first. I loved the bra I ended up getting.

Hospital Wig Shops - I was lucky enough to have benefits that covered my $655 wig but many people don't have that option. Some hospitals have used wig shops that sell wigs at a reduced price or supply them free of charge. These wigs have been donated after being lightly used then cleaned and sterilised. I know there is one at the hospital where I get my chemo and the hospital in Toronto where I did the lgfb workshop apparently also has something along the same lines. I can't seem to find a website to post but don't be afraid to ask someone in the hospital or cancer centre.

Support Groups- Support groups are usually specific to some sort of classification like type of cancer, or age, or are for caregivers of the patient, etc. I know there is one at my hospital that is specific to 18-35 year olds who have been diagnosed with cancer. I am hoping that I will be able to join in the fall because by the time I found out about the summer group, it had started three weeks prior. Regardless, I have yet to hear of anyone going to a support group and not feeling like it was worth it. I think there is a sense of comradery, validation, and some what relief that you are not alone. Although, I can't recommend them from experience, I do recommend them based on what others have told me.

A Mentor- My sister-in-law's mother was completing her radiation around the time I was having my surgery. She was diagnosed last year, had surgery, chemo and radiation and I really leaned on her for the 'is this normal" questions and the 'on what day of treatment did this happen" kind of concerns. She really put me at ease and validated my fears and concerns. If anyone out there has any concerns, or questions and you don't have anyone to ask these questions to, please don't hesitate to contact me. I am not at all qualified to be a mentor but sometimes you just want to know on what day someone else's hair fell out or how long thrush lasts while you are taking Taxotere. I am no doctor but I certainly don't mind answering questions about my experiences.

An Extra Set of Ears - I'm not going to lie, I have unintentionally completely quit listening to doctors in the middle of appointments because I get stuck on certain pieces of information or because I get overwhelmed with new side effects or when 'the plan' changes (for example when a lumpectomy turns into a mastectomy in the matter of minutes) so either bring your spouse, mother, daughter, friend, etc. and/or bring a pad of paper and a pen and write down as much as you can (especially if you are planning to repeat this information to family and friends at some point). I have been lucky enough to have my mom, Keith or a friend with me every time and they always pick up on something that I didn't even realize the doctor had said.

Physiotherapy - Your doctor will probably refer you to a physiotherapist but if not ask about going to one, especially if you've had any lymph nodes removed. They will tell you and teach you techniques and exercises that your surgeon may not that will increase your mobility. - I was able to apply for EI from the comfort of my own home and just had to send away some of the forms via snail mail but it sure did beat waiting in line at an office. I didn't find the process all that difficult either. The website is pretty informative and remember that you can't apply prior to your last day of work.

Health Services- Your doctor is aware of many resources for your well being so don't be afraid to ask. You have access to (although some of these will not be covered by OHIP) psychiatrists, nutritionists, social workers, psychologists, occupational therapists, etc. and if you feel like you could benefit from any of these, don't be afraid to ask your doctor about them. Your recovery is not only physical, it's mental too.
Victoria Ann Morrison was a wife, mother, grandmother, and the best friend of Deborah Rogers, the founder of Victoria's Quilts in the U.S. She was also a cancer patient. One of the comments she made about her chemotherapy was that she got cold while she was laying in the treatment facility waiting for the day's infusion to be over. Deborah remembered Victoria’s comment about being cold and wanted to do something. Since Victoria made so many quilts in her life time, Deb thought that this would be a good place to start. You can request a quilt for someone who has been diagnosed with cancer and within a few weeks, the quilt will be delivered to the patient's home. My mom got one for me and it is beautiful. This is an incredible organization that is completely free of charge. It is currently in Canada and the U.S.. -Look Good Feel Better - A 2 hour workshop that is supportive, informative, and full of easy and inspiring strategies for managing the appearance-related effects of cancer and its treatment. Participants feel empowered and ready to reclaim their sense of self and well-being. They also learn that they are not alone on their cancer journey. As I have said, it was the first time I had eyebrows in months thanks to the easy-to-follow tips on how to draw them on. My brother could have sworn that I grew them overnight, that's how natural they looked.
Cottage Dreams Cancer Recovery Initiative is a registered charity that offers recent cancer survivors the opportunity to spend a week at a private, donated cottage to reconnect and rejuvenate with family and friends after successfully completing treatment. Cool, eh?
I have found that this book really validates a lot of feelings that I have had thus far on my 'journey'. It is called "I Am Not My Breast Cancer" and it's a compilation of women's views, expressions, feelings, approaches, etc, to breast cancer. I have quoted it a few times in prior blog entries and I just can't recommend it enough. When I was first diagnosed, I bought a number of books but this one was that one book that I couldn't read a page without stopping and reading part of it to Keith.
Keep in mind, your cancer centre probably has a library full of books that can be used as a resource as well as your public library that way you don't have to go and buy them.

I found these websites very helpful but I don't advise you to make any decisions without consulting a healthcare professional based on the information found in these resources. They should be used as a guide but they should not be your only source for decision making. This entry was meant to be used as a database and as a way to educate yourself with what's out there. I found these websites to be applicable to me and I had to weed through a lot that wasn't. Hopefully this will save you a little time in an extremely time consuming venture known as the world wide web of cancer information.

Friday, August 19, 2011

'You Look Beautiful Bald'

I'm currently at chemo #5. As usual, I am looking forward to kicking ass. I am a little nervous about the bone pain but the nausea isn't supposed to be a concern with Taxotere and for treatment #4 (my first Taxotere treatment) nausea wasn't an issue.

Just to clarify, I will have had two different chemo cocktails; Cocktail #1 (treatment 1,2,3) was called FEC (Fluorouracil (5FU), epirubicin and cyclophosphamide) and Cocktail #2 (treatment 4,5.6) is called Taxotere. It's the cyclophosphamide that apparently is really hard on my baby maker. It's the IV bag that Keith and I had a little chat with prior to it being administered.

Taxotere has many side effects; I've personally experienced thrush, bone pain, extreme fatigue and water retention. While it's being administered, I'm required to wear frozen gel filled mittens and booties. Taxotere has the potential to crack your nails right up the center so the frozen mittens help slow the circulation and lowers the chance of your nails cracking. The mittens resemble oven mitts, and there are fewer booties than mittens for some reason so, I currently have oven mitts on my feet, as well. They come directly from the freezer; it's comparable to placing your hands and feet in a bowl of ice.

I get asked a lot how long chemo takes and how it's administered. I think I have thrown a few words (jargon even) around and I want to clarify it for those of you who are about to go through it. So, I have a PICC line which is like a permanent IV in my arm. The tube is 53 cmslong and it goes up my arm and into a main vein above my heart. This way, the nurse just hooks upto the tube instead of having to jab me with a needle for every blood test, treatment, bone scan, etc.

Anyway, so when I show up to chemo, I check in, and they have me wait in the waiting room while they contact the pharmacy. The pharmacy mixes the cocktail once they know I am there because the chemo drugs don't have a long shelf life so if for some reason I couldn't make it to my appointment, the drugs would be wasted. I usually get called in about 15mins after I get there and get hooked up to a saline solution for hydration. I also forgot to mention that up to 48 hours prior to each chemo, you need a blood test to ensure that your body can handle chemo. They test you to make sure all your 'levels' are where they should be.

So once I'm hooked up to the saline, the nurse usually asks me questions about side effects or how I've been feeling for the past few weeks (my bowels are always a topic of interest) while we wait for the pharmacy to deliver my cocktail IV bag. Once I'm hooked up, it's painless (I recently had a woman, who was starting chemo the next day, ask me if it hurts while it's going into your veins and I can assure you that it doesn't). I am hooked up for about 1.5-2 hours then get to go home. The whole process takes about 3 hours.

I feel like chemo is now a part of my life but three weeks from today is chemo graduation day. It's all over in 21 days. I'm a little nervous that I will be forgotten about by the medical profession and I heard that this is a legitimate fear. Right now, I have so many doctors monitoring me but in 3-5 weeks the number of doctor's appointments will start to decrease and my aches and pains won't be assessed on a weekly basis the way they are now. Anyway, once the Taxotere is out, the Tamoxifen is in. Tamoxifen is a prescription that apparently slows my estrogen (which is now my enemy) and I will be on it for the next five years. While on the Tamoxifen, the hot flashes apparently continue and my period continues to be affected.

Oh and my period; I saw my oncologist yesterday and told her that I got my period in the middle of chemo. Well, she told me that because I have PCOS (Polycystic Ovarian Syndrome), I probably wasn't ovulating, it was probably just a build up of uteran lining that was being shed. Needless to say, I was disappointed. On the other hand, they apparently don't want me to ovulate during chemo because that means my estrogen levels are much too high and again estrogen is my current enemy. So, although we were hoping that my baby maker had made some miraculous medical accomplishment, it was most likely my uterus getting rid of some excess 'stuff'.

Oh and I have to tell you this; I went to the local bulk food store in my home town and while I was getting some candy for my niece and nephew (alright, I got some for myself too) the cashier, roughly around 16, gave me a huge smile. I wondered if it was a friend's little sister because I didn't recognize her and I don't know that many people that age. Anyway, I smiled back and carefully picked out Mario Bros. candy for my nephew and butterfly gummies for my niece (an irrelevant piece of information). I got up to the counter, knew that I definitely didn't know her and the conversation went like this...

Cashier: Hi.
Me: Hi.
Cashier: Can I just tell you, that you look beautiful bald?
Me: *awkward giggle*
Cashier: No, honestly, you look beautiful bald.
Me: Oh, well thank you. I'm just glad that there's no huge dent back there.
Cashier: Are you a cancer patient?
(Now at this point I start wondering why she's asking because so many people shy away from asking questions because they think if they don't acknowledge it, then I somehow forget that I am bald, eyebrowless, and have cancer at all)
Me: Yes.
Cashier: Are you currently in treatment?
(She knows way too much about this...)
Me: Yes, I have completed 4 treatments and have 2 left.
Cashier: So is my mom.
Me: Oh, I'm sorry to hear that.
Cashier: Ya, she has breast cancer.
Me: Me, too.
Cashier: (She stops counting my change and hesitates. I think she was expecting Leukemia, or a brain tumour, or something other than breast cancer at 26.) Well, you do, you look beautiful bald.
Me: (I wanted to say, 'can you fit in my purse, because you are so damn cute and I really could use these ego boosts every day but instead said) Well, tell your mom 'Good Luck'.
Cashier: I will, and good luck to you.

It was the highlight of my day. And good for that young girl for not shying away from cancer and instead addressing it and making me feel awesome that day. I feel as though a lot of people would tell me my hair looked fine, if I asked, just to avoid acknowledging that I am bald and that I have cancer, so kudos to that girl for asking me.

I have excused many people who have said some pretty thoughtless things to me like "Oh, my aunt had breast cancer and she died last year." Why would you tell me that? OR "Oh, you're going in for your 4th treatment next week? My friend almost died from her 4th treatment because she was allergic?" How is that at all helpful or constructive? Anyway, it's people like the bulk food store cashier that I am going to remember and that make me want to give back after treatment is all said and done. Wouldn't it be cool if I could talk to girls in college or even high school and share my story and spread the word about early detection and breast cancer awareness? Wouldn't it be so meaningful and purposeful if my full-time job was to be able to help other women catch cancer at the early stages and show them living proof that just because you're 26 doesn't mean you're protected?

I've been told and also read that it is very common for people who have had cancer to want to give back and I am certainly one of those people. I have a master's degree in education and instead of teaching in the classroom in the traditional sense of the word, I would love to teach via motivational speaking or writing a book, etc, etc, etc. Many people go through this alone and I would love to be there for someone who doesn't necessarily have the support that I have had.

You know how you always hear about people winning the lottery and then individuals in the winners' pasts come out of the woodwork claiming that they are friends, or long lost family members, or that they owe them money? Well, I have had the exact same thing happen to me in reverse. I am so overwhelmed by people's generosity that I just can't say enough about it. I have had people drop off cards at my mom's house that I haven't seen or heard from in over 15 years (for the record, that's over half my life) and there is money inside of it. I've also gotten cards with donations inside from people who couldn't make it to my Benefit. Isn't that incredible? It's those actions that make me want to give back. How can I make someone's life easier who was just told that she has cancer? I feel like I have a bit of an insider's scoop, as someone who has experienced being diagnosed, had a body part removed and gone through 6 cancer treatments and thanks to the support, had a smile on my face through most of it.


I know it's not Music Monday but a friend of mine posted this song on my facebook and any of us with a supportive spouse can certainly relate.

Monday, August 15, 2011

There's No Place Like Home

Every time I start to write, I consider a few things. First, I think about what is currently affecting me, is it chemo, side effects, reactions to others' reactions to me, the thought of having cancer at 27, etc, etc, etc,. Then I consider how my writing may be able to help someone who is going through a similar 'journey' or at least experiencing similar feelings, situations, reactions as I am. Finally, I wonder if anyone will find what I am writing about interesting.

So, I hope that what I am about to write falls under all of these categories.

After treatment #3, I was, there's no better word than, consumed. I felt awful, I still had another 3 treatments left, I felt sorry for myself, I was envious of any one who didn't have cancer, I felt alone (even with so much support), and I started thinking about recurrence and even death. These feelings were rather foreign to me but for some reason, I was stuck in this valley of pessimism.

I came 'home' and stayed with my mom for a week (unfortunately Keith couldn't get the time off, so I made the trip solo). I packed my schedule so that every day I got to see family and friends that I don't always get to see when we come home for the weekend. Well, if that didn't get me out of my funk! I felt like myself again (not quite 'normal', whatever that even means anymore but I was definitely myself). I was positive, I was full of laughter and life. For the first time in a long time, I felt like I was Katie and not my cancer.

After treatment #4, I was nervous that I may dip back into that dark place because chemo can play some pretty mean tricks on you but to my delight, I stayed on top. My treatment was on the Friday and my mom came to visit on Wednesday (I'm completely stir crazy by Wednesday) then we drove 'home' on Friday (again, Keith had to stay because of work). I got to spend the weekend with friends and family. On Sunday, I got to see my niece and nephew all day (they are 4 and 6) and by the end of the day I felt like I could take on the world! Those two kids are the light of my life. 'Auntie Katie has cancer, and so what'; they treat it the same way as if I had brown hair and coloured it blond, it makes no difference. They don't judge me for being bald or having cancer (like many strangers do with looks of sympathy) and it makes them so much fun to be around.

Side Note; On the topic of being bald, I did purchase a wig but have yet to wear it because it is so HOT. I also rarely wear a head cover anymore either (I'm sure to wear sunscreen). 95% of the time, I leave the house with my bald head totally uncovered. I get stared at a lot, particularly by older people, but I am totally comfortable walking around with a bald head. It's not a choice, I am going through chemo and that's what happens. Actually, I kind of wear it like a badge of honour and I want others to know that when you are diagnosed with cancer and going through treatment, it doesn't mean that you are confined to your bed for 4 months; I can go grocery shopping and to the gym and out for dinner just like everyone else. However, the following words words have been said to me since the start of chemo, "Wow, you're not vain at all, eh, just walking around with your bald head." ????????????? What does that even mean? I'm not going to walk around apologizing for having cancer to make you feel comfortable! The person who said that followed it up with "What do you do if you have to go to a wedding?", "Uh, show up" I said. What do you mean what do I do? Should I be apologizing to every one there for having to look at my head? Should I cover up because you feel awkward or am I missing something and am I supposed to be embarrassed?

I also heard someone talking about the need to cover up with a wig because of society's stigma of women needing to look a certain way. Again, I'm sorry, maybe I'm from the 'new' school of thinking, but I am trying to break that stigma, not feed into it. I think wigs are a fantastic alternative when you lose your hair but some women don't have coverage and they are expensive (mine was $655), and they are hot and itchy and while we experience severe hot flashes, wearing a wig in the middle of August is not always ideal. Okay, I am done my rant, thank you for listening, back on topic.....

I had dinner with 2 of my aunts and 2 of my uncles, my mom, 2 cousins, 2 second cousins, my cousin's sister and her 2 kids on Tuesday night. My uncle was diagnosed with lung cancer 2 months ago (he goes in for surgery today) my aunt was diagnosed with breast cancer a few years ago and went through surgery, chemo and radiation, and of course I am in the middle of chemo. That night at dinner we spent more time laughing than anything else. It makes me jealous that I live so far away. At one point in the night, 11 of us were sitting in the living room and my cousin said 'you know, not to be morbid but three out of 11 of us have or have had cancer.' Isn't that crazy? I think the craziest part is, we were all so happy. That's what family does, picks you up when you need it and makes you laugh so hard that you wonder if you'll ever be able to stop.

I realized that what I needed to stay positive is family and friends. I feed off their energy then in turn they feed off mine. If I am moping around all day, then they will be sympathetic and tip toe around me like I am sick, but if I am my optimistic, energetic, full of life, regular self then they will reflect that in their behaviour. It is infectious.

Listen, there are a lot of crappy things about cancer (understatement of the year) but I am not my cancer. I am a daughter, a sister, a friend, an aunt, and a girlfriend. I'm kind and thoughtful and fun to be around and cancer isn't ALLOWED to take that away from me. I fell victim to cancer's power a few weeks ago and it was draining and daunting and I really don't want that to happen again. I am glad I blogged about how I was feeling because it was honest (and scary for me) but I hope I don't go there again.

Wednesday, I was lucky enough to go to a Look Good Feel Better workshop. For those of you who have not heard of this workshop or are contemplating going, GO! It is a two hour long workshop and the goal is, get this, to look good and feel better and boy does it live up to its name ( You get a kit of goodies that range from sunscreen, to eye brow pencils (I had eye brows Wednesday for the first time in months), to serums to rehydrate your chemo-induced dry face to a cap to wear at night for when your hair is falling out. I was the only one there who had lost her hair so I was the 'model' to show how to draw on eyebrows and how to make it look like you have eyelashes and how to tie scarves in different ways, etc. This workshop is free and I really encourage you to go if you haven't already. I feel kind of awkward saying this, but Wednesday was the first time I felt kind of 'pretty' in a long time. Thank you to all the volunteers for all that you do!

So, I think the purpose of me telling you about all these events that have turned me back around and facing the right way is that I am a true believer in positive thinking. I think two people can be going through similar situations and one can have a positive outlook and the other can have a negative outlook. The one with the positive outlook has a better chance of healing not only quicker but more completely. I think the positive person hits more 'milestones' and the 'things' the positive patient is told are impossible often times become possible. In saying all of this, on Monday afternoon, I got my period after not having it for five months. Not only was I told that it may take up to a year to come back, I was also told that it may never come back and instead my body said 'screw you cancer' and I got my period in the middle of chemo. Now, I realize that doesn't necessarily mean I can have children but it is one step closer and it means my ovaries are working. Keith and I are ecstatic. I've never been so excited to have my period. I even told my dad and brothers (and we just don't talk about periods, haha).

It's a good day! And it was my birthday yesterday, could this week get any better?

\'Count On Me\' by Default
The thread 'Music Monday' on the Forum inspired me to post this video. I swear Keith could have written this song. I am so lucky to have him and the support of so many....

Thursday, August 4, 2011

Constipation, Perspiration, Menstruation, and Inspiration (got it, got it, need it, can't get enough of it)


Current Medication
Zofran (anti-nausea) - causes constipation (and anxiety)
Decadron (anti-nausea) - causes constipation (and anxiety)
Emend (anti-nausea) - causes constipation (and anxiety)
Stemetil (anti-nausea) - caused severe anxiety in me, normal side effect is drowsiness (I stopped taking it after treatment #2)
Gravol (anti-nausea) - causes constipation
Colace (stool softener) - to counteract the anti-nausea side effects (has caused diarrhea in many cases - it's a fine line)
Senokot (laxative) - to counteract the anti-nausea side effects (again, it has caused diarrhea in many cases)
Ativan (anti-anxiety) - to counteract the anxiety caused by the anti-nausea drugs, causes drowsiness
Tecta (anti-heartburn) - to counteract the effects of all of the prescriptions on my stomach
Percocet (pain killer) - to counteract the bone pain caused by treatments #4-6
Neulasta (injection to increase white blood cell production) - causes bone pain
Vitamin D, Iron, Glucosamine (I don't have enough Vit D, I'm iron deficient, and the glucosamine is for my arthritis)

So, I think it's clear that my bowels are confused. I have tried to master the art of stopping the Colace and Senokot before the diarrhea starts and the constipation ends. I have yet to find the right calculation. Is this too much to be discussing in a blog? Is this something that I should be keeping to myself or maybe just between me and my mom? Hey, if I can survive losing a breast, I think you can survive listening to my bowel movement stories.

I realize that too much diarrhea can be a bad thing and wind me up in the hospital however, constipation can do the same thing. My oncologist told me that you need to keep your bowels moving because otherwise they can get blocked and an infection can start. It just seems to be a bit more of a balancing act than I thought it was going to be. After a while, you start treating the side effects of drugs rather than treating the initial problems.

So far, with treatment #4 (it was on Friday), I don't feel too bad. The nausea seems to be totally under control, I am however, exhausted; 2 naps a day for the last 5 days. The bone pain seems to be controllable but is increasing with every day. So far, I prefer the bone pain over the nausea.

I try to give Keith as much credit as I can for being such an incredible man and my number one fan but I do have to admit, after all the times that I have had to wear a gas mask to bed due to his meal choices, it does feel some what good to have the shoe on the other foot. I love you Keith, but watching you cringe during my days of Colace and Senokot makes chemo just a little easier.


There's nothing like going through the change of life, in your 20s, in the middle of summer. The sweating is constant. I mean, no stopping it, uncontrollable, 20 minute, embarrassingly long sweat sessions. I don't have a lot to say about it other than, I won't miss the hot flashes when they're gone.


Who would have thought that I would actually miss my period?

I've never had a normal period. I would say that I would have an average of 5 periods a year. After diagnosis and before chemo, Keith and I went in to discuss fertility treatments and I found out that I had PCOS (Polycystic Ovarian Syndrome). This syndrome means that I have more follicles on my ovaries (60) than the average woman (24).

I was told about 8 months ago, prior to any cancer talk, that there was a chance that I had PCOS but I would have had to take a blood test and go off the pill for 3 months, both of which I wanted to avoid. The ultrasound of my ovaries in May confirmed a diagnosis. The diagnosis ended up being a positive thing in the end because the more follicles I have, the better our chance of having a baby post-treatment. Like our fertility doctor said, 'If anyone can go through chemo and have a healthy family after, it's you".

Needless to say, I haven't had a period since before surgery in March. I knew that chemo could kick me into early menopause and I knew it would probably stop my period but you have to wonder, are you still a woman when at 26, you have one breast, no hair, and you are no longer menstruating? It's funny how much we complain about simple things like frizzy hair, and sagging boobs, and periods and then one day they are literally all taken away from you. I know the days of frizzy hair will return as will my complaints but sometimes I pinch myself wondering if I am actually facing this disease we call 'cancer'.


I've been told by a variety of friends and family that I am 'an inspiration' because of my approach to cancer and its treatment. Personally, I don't feel like I am doing anything that any of you wouldn't do. I am going to my doctor's appointments, getting all of my stupid chemo, and not shutting up about having cancer. Prior to my diagnosis, I never thought I would be able to handle cancer and on top of that be positive while I'm doing it, but when you surround yourself with positive people, it's amazing what you can accomplish and how your approach to life can change. As I have said before, it's ironic that it took cancer to make me realize how lucky I am.

If anything, for someone who craves attention, having a blog and having articles written about me is kind of enjoyable. I wish the articles were about finding a cure for cancer rather than being diagnosed with it but I will take what I can get. I will shut up about having breast cancer once this disease is the top story on the news every night and to be honest, since March, it has astonished me that it isn't. Like another woman from 'I Am Not My Breast Cancer" says, "I'll be grateful when the solution to the disease isn't to chop off a body part and then systemically poison and burn women". I couldn't agree more!

I've certainly had some good inspirational teachers along the way. Growing up, I have been surrounded by women whose lives have been personally effected by cancer who have taught me a lesson or two about what it means to be an inspiration. First I want to thank Brenda J., you taught me that being diagnosed with cancer doesn't mean being diagnosed with a death sentence. From the beginning, you decided to deal with cancer head on, and not long after that, I was faced with a similar situation. Thanks to your approach, I continue to come out on top. I would like to thank my Aunt Sandra who gracefully lost her battle to pancreatic cancer. She taught me so much about life and laughter and she deserves so much of the praise that I receive because she is a contributing factor to the woman I have become. My Aunt Gloria is quite the woman, I think in her case, it was the first time cancer had been killed with kindness. To Barb H., although we didn't get to know each other very well and you were taken much too young, you have not only taught me about self advocacy and strength, but you have raised one hell of a daughter who has been one of my biggest supporters; thank you! Finally, I would like to thank Sherry A. who's positivity is infectious and who's determination is beyond admirable. What she does on a daily basis helps women cope with and beat cancer. Thank you, ladies!
Do you know how many people, women especially, that I have met who have kicked as much ass as I have but just haven't expressed it (either verbally or in written form) for others to see? You don't have a choice when it comes to being diagnosed with cancer, but you do have a choice when it comes to how you are going to deal with it. I could be miserable and sad for 6 months while I go through one of the hardest times of my life OR crack a smile at least once a day, have some laughs, shed some tears when necessary and allow others a glimpse into a life with cancer.

36 days until chemo graduation day!