I faced cancer the way I have faced other traumatic issues in my life - with a strong attitude that hid my fears and shored up my defenses from anyone or anything upsetting me or getting into my walls.
You know, I read a book recently that had a main character talking about how bad things happened and then it would mean the rest of their life should be "clear sailing" because they used up all the bad stuff... This made me jump a little because yes, I have had some things happen in my life before I hit like 33 that you think would have used up all of my "bad luck".
Again, I do not really believe in "luck" - I believe we make our own luck and one thing I definitely believe now, post breast cancer, is that we can work on manifesting the positive, the good or at least put a spotlight on it and obscure the rest.
When people told me, during my cancer diagnosis and treatments, that I was "brave", I wanted to punch them. I did not have a choice but to do what I was told to do by my doctors. Instead, I settled on being "tough" but now I think it goes beyond that and goes into being "bravura" which is more "cleverness" and "skill" than brave.
At first, when I started building out this website from the blog to include the children's book and the career after cancer initiative, it crossed my mind, "Why am I doing this - what if I die?" - so even though I am so "positive", I do still sometimes succumb to the fear.
The way I manage it is to keep moving forward and to keep thinking about how I can help others with my perspective, my passion and my experiences. Cancer does not define me but it did put a lot of things into focus for me that used to be unclear. I know now what I want to do with the time I have left and that is to help others and to enjoy my life, my kids and my husband, family and friends.
I am not doing this to be "famous" - in fact, I think that would suck (though I would LOVE to be able to "swipe up" in my Instagram stories so if I could get to 20k followers there, that would be great - ha). I just want to keep pushing my bravura and keep myself focused on how to help others in anyway I can while enjoying life and all it has to offer.
This is what I do in the time between...
I launched my first free webinar today sharing a little bit about how I plan on helping YOU (yes you) get back to whatever it is your "new" normal is - I have been sharing more and more via other websites about what it means to pick up the pieces after cancer drops a nuke in your life to figure out how to get "work ready" again and one piece I am really proud of is this one that I wrote for What Next Cancer's Blog which has been shared over 200 times already - help me share it more by clicking here ->
What I love about that post, besides the prose and my turns of phrases (seriously, I was ON FIRE) but also that it has been updated to include a link directly to the webinar I worked on and launched yesterday.
Let me tell you about the webinar filming - I had aspirations to go into NYC and use my available office space to film it and be "uber professional" BUT life got in the way. I have been being kinder to myself and trying to give myself time to recoup and heal in so many more ways than just being restful and mindful of my new abilities and such.
So instead of being all high powered Lisa, I used my kids' playroom to film and my dog made an appearance but everything flowed the way I wanted it to and I was proud of it despite it not being "100% corporate level" because that is not me - I am more laid back and personable and just ME. Like, I can help but I do not want to be "this is my business model" because it is not. It is just me trying to help others in a way I know how by saying, honestly, hey, I do not know how to accomplish this yet EITHER but I do know a lot of stuff about it because I used to be an "expert" and this is what I DO know.
I am embedding the video of the webinar playback below and will also update my main page on #careeraftercancer with it to help people be able to view it without having to login, etc.
This is what I do in the time between...
There are so many things I have had to let go - past hurts, past grudges - things I would normally be able to hold onto for decades are now, all gone. I am transparent or as transparent as I can be by sharing my story and being as authentic as I can in life, love and all matters in between.
Sometimes, though, I have a flashback to when I was going through chemotherapy and it hits me hard in the gut how people can be so cruel, so small minded and so dumb regarding the body's potential to turn on you and how it can happen to anyone, at any time.
I hate to hold stock in karma and the truth is that I wish bad on no one - I do not have time for that. I have made choices and conscious decisions around letting go and probably not pursuing things that if I did pursue might make my finances less grim.
So turn the other cheek is what I did and continue to do but sometimes, I have a flashback or a nightmare and it hits me that there is evil in everyone - that some people exist to be the villain in their own mind and you know what, I pity them. More importantly, I hope that karma skips them - let them continue to live in ignorance and enjoy their healthy bodies, their two boobs or two balls or whatever and let them know that I pray for them - I pray for them to never experience what I did and that though I am broken and battled, I will always be kind, which is more than I can say for them.
What is it all about? Life, love, relationships, fun, etc... what is it that we all want to be/ do? For me, sometimes, it is to shirk off my responsibilities (of which there are many) and be on my own and just write and/or enjoy my time - time without cleaning, feeding, caring, loving, etc etc...
As a mom, I guess I should feel badly about that - but I do not. My kids are amazing little people but they are draining and still unsure in the grand scheme of things if this new mommy, this one who has only one boob and less patience, is here for good or if I will die or if the other, rounder more singularly focused mom will show back up one day.
I feel for them, I really do - especially because I know what issues can be fraught within a mother/child relationship. I know that they see me as being the ultimate caregiver and that there is not anyone else in the house or the land who can compare to what I do and how I do it. I know they know that the extracurricular, the events, activities, etc are all somehow orchestrated by me and that I ultimately am the captain of their ship/lives/etc.
It is overwhelming for them and for me. It is also making them want more from their dad who God bless him is only able to do what he can do. I knew from the get-go that he was no Mr Mom and although he stepped up amazingly so during my illness, that time has passed.
All things considered, I had spent many years contemplating divorce and being a single parent as most times, I did feel as though I was one anyway. Now, with my new perspective and interest in expanding my role from just "mom" to you know, "Lisa", it is still hard to get others to play nice and handle the otherness of being the caregiver, even for a little while.
I have started letting my kids sleep out, something the old me would have never ever done. It is a luxury for me as we do still struggle with the bedtime routine and getting everyone settled so Morpheus can come and take me away - and as a breast cancer survivor, it is even harder to get that much needed rest.
I am realizing how much I had been depriving myself before I got cancer - how much I put myself lower than last and did not think I mattered at all besides being the person to clean up and take care of everyone. I do not want to be that person anymore but I still have to fill those roles so it is a very hard dichotomy in my soul and in my life.
If I had more help at home, I might be less tired and less irritable (occasionally). I might be more able to manage the grand ideas and schemes I have in my mind that could help our accounts go from negative to positive. I might but then I might not.
I might just use the time to sneak away as I did now just to write down the things that are inside my soul, that bother me, that make me want to spend this time, writing it out, getting it out of my head so I can then go back downstairs to the cleaning, the feeding, the caring, the "mom" role that I cannot bring myself to reject or to hate as my life really is contained within these walls - if my kids are ok, I am ok...
At times, though, I recognize they are not "ok" they are still scarred, still scared and waiting for someone, anyone to convince them that all will be all right and I see my own childhood traumas and scars in them... This makes me feel even worse - and guilty no matter how much my analytical brain knows that I did not cause my own cancer and that therefore, none of this could be my "fault", I still feel guilty. I think being a mom is full of guilt and pure love of self and others but it is mainly, at times, guilt.
Guilt at being the one who has to put the quash on any big plans - I am currently dreading the upcoming spring break because too little money + two little children + 10 days off = DISASTER no matter how many ways I try to spell it. I have to get on planning play dates and other low cost alternatives to the potential of having to drag them out every day to tire them out when the weather is crap and the finances are even crappier.
Yes, though I promise myself to let go of the finances that does not mean than everything is suddenly free.
So I continue this tightrope of not giving in, not falling into the despair of feeling defeated - I have gotten this far and as long as I do not need chemo this week or this year or this decade then fuck the rest. Though, I am hiding in my room for a few hours more if I can - shhhh, don't tell anyone.
This is what I do in the time between...
My whole life, I have experienced things differently than others. I know a lot of people who fall apart at the drop of a hat and I was always stoic and focused on how to survive the things that happened instead of wallowing in them.
I have had people "pity" me before I got cancer. Pity sucks and I thought I had written before about how it is a useless emotion. I pity you and think how lucky I am to not be you and then moments later I am all pissed off about something not working the way I thought it should. At no point did anyone learn anything, anyone help anyone, or anything positive come out of that experience.
For me, there are times when I am reticent to share my story upon meeting someone new or when talking with folks. I do not know why this is - I am almost ashamed of it but there are some people I can sense off the bat would pity me harrrddd and though I am used to it sometimes I just CANNOT.
As I said, I have experienced pity before being a "motherless" child - through divorce, not death, marrying a cop who had some issues - to put it mildly, having had miscarriages and being broke and well the list goes on... I always have and will continue to hold my head up high despite the drama the pitying looks and all but sometimes I tire of being this "sick person" who is pitied.
You know, I am not sick. I do not *feel* sick aside from being tired but I was always tired even before cancer and its treatments. I know I have written this before but it bears repeating for any newbies reading this - when you are diagnosed with cancer, throw out your experiences of what it is like to go to a doctor. Before cancer, if you do not feel well, you go to your doctor and they make you feel better. During and after cancer, you go to the doctor and you get hit with treatments that make you feel worse, worse, worse than you can imagine.
Then, once you are "done" with all of your active treatment, there are still more things you must do such as hormone therapy and/or ovary suppression and/or clinical trial and/or just hope and pray it never spreads (God forbid) or comes back (also God forbid).
You know you cannot live in the mire or in hiding (trust, I did it for a while and I could not any longer hide but instead went loud and proud by unveiling myself in this blog). Sometimes in telling your story, you feel so empowered like a kick ass warrior women who knows how to manage it all but then you look at the other person who never had to deal with cancer and you envy and worry about wow how much it would have been amazing to go back in time and never to have been told you have cancer...
Now, I know it is hard for me to ever hide this shit as I have only one tit and oh a blog that about 2400-3000 people a WEEK are on and reading; not to mention my Facebook and Twitter accounts that are also kind of broadcasting the fact that I am, in my own mind, a cancer survivor.
However much I call myself a survivor, my doctors at Sloan would not as there is something about a 3-5 year window that needs to be hit before that word is given to you. That being said, I am okay with calling myself a cancer survivor (just recently, though). I was calling myself a survivor in training but I decided to just go for it and promote myself because I do so believe that a bulk of this crap with cancer is mental and physical and luck and out of my control.
When I created my hypnosis script and mixed it with a meditation tune in February, I was so damn happy about it because in my mind it is another layer in my defense - I am hypnotizing myself to believe there is no sign of disease anywhere in my body, plus I am exercising and staying low on the scale to help with risk of recurrence and eating healthy and using only organic crap in my hair, on my face, on my body etc and STILL I know as much as the sun will rise tomorrow that there is still a 30% chance that I could become stage 4 and die from this disease.
I do not know what other people know about these stats, though, when they pity me. I do not know if they know that stage 4 is the only kind of breast cancer people die from or if they just feel bad my hair is so short, my boob is one less or that my kids went through something life changing at such young ages.
I do know that no matter what, I keep sharing my story, meeting more and more people and struggling with my own fatigue to figure out how to execute on even bigger things to help others who have been told "you have cancer". May it never be you or someone you love but if it is, I am here for you.
This is what I do in the time between.
In keeping with my promise to myself, I have been focusing more on self-care and on being kind to myself. What does it mean to be kind to myself? It means I am not beating myself up anymore about things I cannot control or do much about in terms of finances, stamina and just whatever else can come up.
I do want to do so much and I still plan on doing it but in pieces and much less showy. I also am still very active on my Instagram, despite initially thinking I would not be. Insta is really kind of my lifeline, my connection to others who have walked my walk and who can understand how I feel.
I have been slightly more social of late, too with some parties and events I have attended. That is all great but as we all know, sleep is impacted by the aftereffects and current effects of treatments/medications so I have been more tired and also trying to manage out my time effectively. I want to enjoy more with my kids and focus on all of my blessings - the fact that as far as I know I am NED and that last year at this time, I was just wishing I could survive chemotherapy and be considered "normal" again.
Now, though, is the wisdom that I cannot be "normal" again - though I see myself as still being "me" I am not the me I would have been had my plot twist of cancer not hit me right in the middle of chapter 39 of my book of life. Instead, though, I am starting to love this new me, this creature who knows what to do though I forget often enough that I need to remind me to be nicer to myself, to know what I need to let go of to say fuck it all when my bank account goes red to not fear tomorrow or to think about how to handle tomorrow but instead to enjoy and think about today.
Unfortunately, no one knows what tomorrow will bring but when your yesterdays are full of chemo, surgeries and learning this new vocabulary of cancer, you kind of learn that today is the shit.
So today and yesterday, my kids are home (thanks nor'easter #4 in 4 weeks!) and instead of obsessively planning out my next steps and what I want to do, I have been watching movies, cleaning & laundry (it never ends the cleaning and laundry involved with being a mom/woman/etc) and just enjoying my little people and my family, too.
Wednesday night, I got to fulfill a little dream by being able to walk on a runway for my kids' school. I thought I would be one of many moms walking but I was the only mom who walked. Lately, with my new makeup skills and the use of a makeup artist, i have been feeling glam and fab - but not too big for my britches than to also post photos of me looking ridiculous and spikey!
In between Wednesday night's festivities, I have been home and reading and resting with the kids (or when they are at school, just on my own). That is my solace, my escape - I read and it is like watching movies in my head. I have wanted to write but I have been loathe to get my laptop and start going at it ... today was the first day I had the urge to write.
Last year at this time, I still had 40 days left of chemotherapy treatments... I refuse to get down about anything, though it is a challenge to keep myself focused on the positive...Check out my pics & my video of me on the catwalk and let me know what you think! I had always wanted to model something and this dress was perfect for me and my one boob-situation - you cannot even tell! Some of the women there were telling me how brave I was to model and I was like, "sister, I had a boob cut off, this doesn't take much bravery!" ... This is what I do in the time between...
This blog has been for me and continues to be an online diary, in a lot of ways. I share things that I really did not think I would ever share with more than my own private diary and it does help me put it out and I know it helps others to read it. I am sure I get some looky-lous just showing up to read about stuff they hope to never experience (with 3200+ people this week alone on my blog, how could it not be so) but overall, I think we are all here because we are or we know or love someone with cancer.
I have been very unkind to myself, friends. I have been pushing and stressing and trying to build an empire when I can barely make it through my week. What does this mean? It means I am moving too fast, trying to do too much and I am not really sure to what end.
I want to be an entrepreneur and make my own hours with The Next Step but I do not have the stamina or the mental wherewithal to get it where I want it to be and let's be honest, even pre-cancer me struggled to really get to a point where I could say, yeah, this is a living. It was not a living. It was a constant fight and struggle to get in front of people, to sing for my supper, so to speak and I did it and then got offered a full time job and did not even think twice about walking away from that endeavor.
Now, here I am, battered, bruised and missing a tit - it is just something that although I live for the flexibility, there will not be the financials to justify pushing, clawing and presenting my way through the next 6-8 months to even get somewhere.
Then, I am trying to build so much around career after cancer when as you all know I have yet to find a job period. It almost feels like a bad case of imposter syndrome though I do know I can help others with my background and lessons but just the thought of launching this is giving me such cold feet.
My children's book is my passion but just getting it out there costs money and to be honest, as I have been before, my budget is broke.
Here is where it all comes together - I need to let it go. I cannot change my budget or my financials at this time. I do not have the stamina. I went out dancing like a fiend on Saturday night and then spent yesterday in bed and today I am coming to you from my couch without the energy I needed to do a practice of my first presentation via seminar.
I beat myself up too much, I get too pulled in with trying to be something I do not think I ever was. I have always been the person who needed 8+ hours of sleep, even before cancer. I have always been a bit of a homebody who struggles between being totally outspoken and social and really introverted.
I need to promise myself some stuff.
1- I need to forget about my finances and stop trying to correct them, add to them and/or freak out about it anymore full stop. I spent the other night in my bed so sad thinking about the job/opportunities I just do not think will work out and/or the ways in which I cannot continue balancing it all out and my husband and children came upstairs to hug me and to tell me how much they love me.
THAT is what is important and is what made the tears fall more than the sad thoughts about budgeting and being broke but instead about how much I am loved and how much I have to be here for it.
2- The financial toxicity of cancer is not just something I am going through - everyone who has been diagnosed and gone through something knows it is true. There are costs you cannot budget for and the biggest cost, for me, has been my mental capacity and my stamina (the former is still pretty decent but man it used to be so much more and the latter while always bad is just so much worse it is comical). I do not think I have it in me anymore to rush around to multiple places a day to sing for my supper or even to manage out the ability to have a set schedule of a few days a week.
When I feel terribly about it, which I do, I want to shake myself and remember that is has not even been a year since my last chemotherapy yet (May 1; coming close but not here yet) and that money is only good for things. Health is most important but it is so hard for me to get that when I have things I need to pay for but cannot. I also have things I want to pay for but cannot. I have said before that our budget was often bad once I opted out of full time work in NYC but this past year (almost) since I stopped working due to being laid off it has been the worst ever.
3- I need to stop focusing on sharing and sharing and sharing so much all the time. Although it is wonderful to share for sharing's sake, getting sucked in to doing it for ego and/or for "fame" is something I do not want to do. I want to treasure the relationships I have built, never exploit them and to just enjoy life whatever is left of it.
This means I will scale back on my guest posting, my constant sharing and my self promotion. I do not want to ever make money from cancer PERIOD but I also do not want to trade in my authentic self with something cloying and/or manufactured. This is me, I am half flat, I still want to focus on healing and being out there so much means I have less to give to myself... and that is not acceptable. I will still update my blog but I will use Instagram less and not jump so much as the chance to do X Y or Z for the thought of making myself the face of something. I am just ok being the read end of it or the missing tit of it - not the face, it is not necessary.
4-I need to enjoy the little things more and not think about how to post it and/or share it - ironically as I am sharing this but the fact remains that writing things down and getting it out helps me and if in turn it helps you too that is an amazing byproduct of what is basically my self therapy...
5-Health is most important -putting this last but it should be first. I want to just balance out my sharp edges - my fears, my anxieties now shifting from cancer to bills - it is not acceptable. I survived fucking stage 3 cancer, so what I am struggling financially to hit certain things - I am not alone in this. I am lucky, I have my house, my food in the kitchen and husband, kids and dog, too. Oh and parents, mother in law, friends, brother(s) - only one is speaking to me but that too has to be let go of because I cannot keep it all inside or worry about it.
This is what I am doing in the time between - trying to learn to let go of what is poison and focus on what is good. As I have said before, a bunch of people in a room slap their problems down like playing cards everyone will want to pick up their own problems to leave the room with so I won't stop smiling ... just have to stop worrying.
One of the worst things I have ever had to do is tell my kids I had cancer. As a parent, you just know you cannot show fear. It is funnily enough why I thought I never wanted to have kids - I used to fly to Italy for the weekend and would always look at moms with young children and feel so bad for them because when the plane hit turbulence, they could not show fear without freaking the fuck out of their kids. I could, though, because I was just a party of 1 thanks so much.
In fact, this summer, we flew as a family for the first time (not only was I against flying with children but I also could not afford to do it anyway so win, win…) well we finally went to Disney and thankfully, the plane ride was pretty smooth and no children were frightened on the flight. Though, all things considered, a thing like a bumpy plane ride is not something that can scare my kids. Or me, for that matter.
We faced something much, much scarier with me being diagnosed with cancer and though we present it as though it is over (and I guess it is), I still have that voice way down deep in my head that says, “What if…” but my soul and heart says, “No way!”
Obviously, no one can see the future and breast cancer and any cancer really is something that is never just “done” - no matter what, I carry with me this tiny fear and these big “issues” in terms of medications, ovary suppression, menopause, reduced cognitive abilities, fatigue etc etc but if you read my past blogs and know me at all, I think you know I am leery to ever complain. I just do. I don’t complain.
However, if I am being totally honest, my body and mind and experiences are no longer the same as it once was as it maybe could have been but I am still here, G*@damnit, so I cannot really give a fuck about it.
Instead, I just live. I live differently, but I was always a little different anyway. When I found out about magichour.org, I was intrigued but also not sure if I should sign up. They offer free photoshoots for patients, people in need, etc. I am a mom and my kids are now 10 and 7 so we have had professional photos done in the past. My daughter’s communion 3 years ago was the last time, though, that we did so.
When I look at those and other photos we have, I do not recognize myself in them, like at all.
This new post cancer me has chiseled out and become someone who I guess I used to know - my low high school weight, my cropped out hair, my wariness behind my eyes, my posture, oh and missing a freakin boob all make these old photos dated and all pre-cancer.
So, signing up for this when I was still swollen with excess weight, bald and not really sure how to look at myself in the mirror was not easy but I did it anyway. I thought it would help to have new memories, new professional photos of who mom is - this mom, not the old one who had pros and cons to her but the biggest pro of course was what I never appreciated - my health.
When my application was received, we got word that a local photographer was being contacted to connect with us. That local photographer was Jessica (I wrote about our shoot here).
The photos are amazing full stop. They show a family anew - this family, where the husband and wife actually appreciate and show love to one another and where the children know mom is not a superhero per se but a tough broad and even the loyal pup gets in on the action... See more below ->
PS: Don't tell my dad I am posing half naked on the internet - thanks bye!
If you are a breast cancer patient or know one or love one then you might know that there has recently been some new developments around how to stage breast cancer. I had heard of these changes a few months ago but did not have the courage or interest in looking it up - partly out of fear- whenever you google stage 3 cancer (go ahead, I will wait) you see things like “72% 5 year survival rate” and you can sit here and worry about which slot you fall into - the 72 or the 28… so I am very leery of googling anything as I think everyone with any kind of symptoms or illness is because you google and Dr google tells you “that's not good”.
When I heard about the new staging, I also heard that anyone who was already staged would not be re-staged but I am currently not sure if that is still the case. I was spurred on to look into what my new staging would be after seeing an IG friend @mycancerchic (www.instagram.com/mycancerchic) story where she recently presented for an organization (hey anyone need a speaker in the tri-state area, check me out here) and while there met with a surgeon who had the “cheat sheet” so to speak of staging. Anna found out she was now a 2A whereas she had been diagnosed at a higher stage. This got my thinking and moving so last night, I spent a few hours tracking down some resources.
Yes, a few hours. You see, the staging change is recent so a lot of information out there is still on the old information. Plus, I did not want to use just any link, I wanted it to be a trustworthy source.
I am sharing here what I found with instructions of how to re-stage yourself but remember, I am not a doctor so you should consider asking if this even makes sense to do for you and your health. I am a nosy wanna know it all so I had to check it.
I had to use my pathology report (readily accessible on my MYMSK app but for other people might be in a folder you got at your pathology meeting and do not know where it is)... You need that report to figure out the new staging. I found that my “tumor” was a T3, meaning it was larger than 5cm (there is also a T4, I will get into that in a bit). I also had to see what my “N” rating was - this has to do with node involvement and for that I was N2A as I had 5 nodes out of 25 test positive for cancer.
At the time of my surgery, December 2016, this made me stage 3A. I knew, though, even then that if my tumor was 5cm (instead of 5.6cm) and if my node involvement was 4 instead of 5 that I would have been a lower stage. This was disheartening, especially because I was proactive and did yearly mammograms, had no lump, family history, etc and in April 2016 all I had were “microscopic calcifications” that had 98-99% chance of staying benign and my local hospital had spoken about me probably being a stage 0 or 1. Then, bam, stage 3A, what’s up. It is of course just a number and it is infinitely better than stage 3B, 3C or (God forbid) 4 but it was still shocking to have that out of nowhere happen to me. I got over it quick though and went back to smiling and dealing with it.
Now, though, with the new staging guidelines, my T3N2A GRADE 3 (highest grade, of course, just like in college this 4.0 only knows how to do the “best” but in this case, of course, it is the “WORST” as this means my cells were all kinds of fucked up) and with my ER/PR Positive, HER2 Negative information, I am stage 2B.
Not a big difference you think though as Stage 2 only has A and B but the 5 year survival stats for Stage 2 is 93% versus stage 3’s 72%. That is a big fucking difference. Now, as most of you know, I live my life as though I am cured anyway so I do not get bogged down in the potential for disaster BUT of course I have my moments where it hits me that the clock could run out before I hit my last shots, before I get to see my kids grow up, before I am ready to say “OK, I have done it all and am ready to meet my maker.” You know what I mean.
So this is a huge jump and of course, I know that with the re-staging I just did to myself, there is no medicine behind it - as in, I am not sure if I would ever officially be re-staged by my medical team or if this is even valid but in my heart it is something I just know to be true so who cares who confirms it?
So think about it if you re-stage yourself, it might not officially mean anything but it is interesting to see especially for those of us staged within the last few years - I mean, I was staged December 2016 and these new stages came out in December 2017 so it was real recent.
These are the resources I used - you need to go to the Cancer.org site to figure out what your T and N means given these new classifications and then take that information along with your cancer type (hormone, HER2, etc) and Grade (1,2 or 3) and then go to this Komen page and find your “new” stage.
So, what happened? Up or down? Again, please note that I am not a doctor and I do not play one on TV so if you need any help or have questions about what this staging means, ask your doctors and expect them to say it might not apply to you as you were staged before the change.
Thanks!! This is what I do in the time between...
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