Me and My Mammograms

Sorry this is so long again…and it doesn’t end on a positive note.

When I was 37, I went for my first mammogram. They told me they saw something suspicious and wanted me to return for another one in 6 months. The results from this mammio sent me into a complete tizzy. I was incredibly frightened for 6 months thinking that I had breast cancer. To top it off, I had a 2 year old and was pregnant while receiving the follow-up mammogram. (And you know my fears about radiation.) So I wasn’t too happy with the whole experience when they gave me the results, “Oh, it’s nothing, probably a blocked duct.”

That’s when my mind turned sour toward mammograms. I was also into my natural phase when everything had to be perfectly safe for my children – especially while breast feeding - including trying to rid my migraines naturally and putting everyone through that hell. I read about mammograms where someone said there may be so many more cancers being diagnosed due to the radiation from the mammograms causing the cancer. In addition, I read about how they scare women and put them through too many unnecessary biopsies due to false positives.

I experienced a false positive and wanted no more of that! Now though, I wonder if it wasn’t a false positive back then. I’ve read that breast tumors start growing 12-15 years before killing their host. That would put my tumor starting to develop right about then!

Anyway after Aimee was born I found the supplements that I thought would keep me from ever dying. I mean ever! Plus, that really seemed like an incredibly lucrative opportunity, especially for a stay-at-home mom with no income who didn’t think she could ever go back to doing counseling again. It also seemed like an incredibly lucrative opportunity for everyone else too – I mean, who wouldn’t be able to see that! I did fundraisers for Jason’s preschool and tried like heck to make some money. (You know what type of business this was and I’m sure many of you have gone down that path unsuccessfully too.)

Why am I telling you this? Because those supplements really did help me – for awhile. I had this bad immune system – gee, could you guess that? All I needed to do was look at a child with a runny nose and I’d catch the cold – every 3 or 4 weeks. And this supplement took that problem away. So I tried another of their supplements and discovered that the fibrocystic stuff I’d felt since high school disappeared along with my period pain and grumpiness. So I pretty much stopped worrying about breast cancer or any cancer for that matter…I was never getting cancer with these products!

After about 5 years on these products, my symptoms returned. Now I couldn’t eat any form of sugar – besides some types of fruit - without my nose stuffing up, getting tongue sores, getting a migraine or coming down with a cold. I also had pretty bad insomnia which I’m sure didn’t help my health. I started skipping periods when I was 37 and was definitely in perimenopause by 43. I noticed that if I got my period in the morning and then took my supplement, my period went away. So I decided to stop taking that one supplement that helped my breasts. Immediately my lumps returned so that made me sure they were the fibrocysts because they had gone away when I started taking it.

My mom was diagnosed prior to this time and every time she asked me if I was getting mammograms I think I either lied to her or scoffed at them. I could tell she was worried but what could she do? I told myself that I wouldn’t get cancer because I took these supplements and I nursed my babies for so long and mammograms cause breast cancer and false positives! I also never mentioned anything to Geoff. I think he may have brought up the subject a few times and I would change the subject.

About 3 years ago I’d been off those supplements for a couple years and started getting worried about my breast. It was around the time before Jason’s Bar Mitzvah. I had other things on my mind, including a doctor who wanted a uterine biopsy due to my having a period after not having one for a year. I knew better than that doctor! G-d gave me that period so I could go to the mikvah for the first time in my life. (I wanted to do it before Jason’s bar mitzvah because I’d heard it was good for your children.) Still, I went through the trauma of that biopsy and worried about it all through the bar mitzvah. The results were negative.

After the bar mitzvah I went to a naturopath who offers thermograms – an alternative to mammograms. She told me nothing was wrong with my breasts and I needed to take supplements for other problems going on in my body. I was relieved but wondered about her results. Didn’t I see online that those thermograms come with photos of the hotspots? I never got one of those. She reassured me that her thermograms were better. Over the next year, my nipple inverted…

So I went to a different doctor who offered the kind of thermograms that give you the photo. That thermogram result told me there was the possibility that I could have cancer growing in the future and highly recommended I get a mammogram and an ultrasound. That’s when I got my 3rd mammogram in my life that led to the biopsy that diagnosed me at stage 3.

The morning before going in for the biopsy, I met with friends for tea and reassured them that I just had benign fibrocystic lumps. I told the doctor and the nurse the same thing while I was lying on the table having my breast punctured 5 times. I could sense the darkness & fear in the room and knew that they were incredibly concerned that this woman was in danger. I wished I’d brought Geoff with me to hold my hand…

P.S. I have an article about thermography written by an M.D. who graduated from Duke University who believes that thermograms are better than mammograms due to fewer false positives and earlier detection. The article has a picture of what a thermogram photo looks like. After my story, you may not care to read it, but it could be that I went to the wrong doctors and didn’t go early enough – they cost $200 approx. and aren’t covered by insurance. This doctor is in Walnut Creek. I can email the article to you if you request it. It’s a pdf file and I’d link it here but don’t know how.

P.P.S. I forgot to mention that breast MRIs catch breast cancer very early and I would probably ask for that if you have a suspicious mammogram. Unfortunately, it may not be covered by insurance and is very expensive. A breast MRI caught the nodule in my right breast which wasn't evident in the mammogram and only vaguely evident in the thermogram. It was removed when it got biopsied - which shows you how small it was! Breast MRIs may be the wave of the future.

Letting Go of Shame & Guilt

Sorry this is so long...

When I was first diagnosed, it was during the days of Tshuva (return/repentance) between Rosh haShanah and Yom Kippur. I’m not anywhere near the most observant Jew and have struggled to become more observant through the years by (doing my best at – and sometimes not doing very well at) taking on another mitzvah each Rosh haShanah. Also during this time, I think about my sins of the past year and try to make amends with those who I feel I’ve wronged. But having this diagnosis during this time made the High Holy Days all so much more meaningful to me - and judgmental.

The first few days after diagnosis, I cried pretty non-stop. Not for myself and the horror of the treatment and the possibility of death. Instead, I cried out of guilt, shame, embarrassment, and the sheer responsibility I took on for not getting this taken care of sooner because had I not waited, my children and my husband, and parents and siblings would not have to go through all this pain over me.

I called Doris who I met through Chabad and who is a therapist and who also has had some experience with this devastating disease. I told her how I couldn’t let myself off the hook for all the pain I was going to put my loved ones through. She told me something that really helped me that I will never forget: “This situation just gives us all an opportunity to show you our love more openly.”

My parents were in Ireland at the time and I remember emailing my mom the news in the possibility she might check email. I was very worried about calling her once she got home because I didn’t listen to my mommy and get a mammogram like I should have. My dad’s a doctor and I was also worried he’d be mad at me. (I got really young and small and scared about their reactions.) Luckily they were both loving and gracious when I finally talked with them and were just worried about me and didn't lay any guilt on me.

When I went to shul on Yom Kippur, the rabbis asked for my Hebrew name for the mishaberach. Being a few days after diagnosis, I was still in such denial that I thought, “am I really sick enough for that?” Then I started to wonder what the significance was of having a mishaberach on the holiest day of the year. Most people there knew about my diagnosis and during a break, I got lots of hugs. That was hard because I had finally stopped crying and the hugs just started it up again. Fred, one of the people I’ve known since Baily and Yochanon first moved to our town (he helped the rabbi while I helped Bailly), told me he wasn’t able to tell his mom about my diagnosis because he was afraid it would devastate her. His mom is Rosey (a good friend of mine) and she has called me almost every day since I got out of the hospital.

Anyway, because I was crying again and couldn’t stop, I didn’t go back into the services and instead talked to Bailly and Stefanie. I told them what was really bothering me (the guilt of not finding out sooner) and Stefanie (another therapist friend of mine who I met through Chabad) told me something that really helped and that I will never forget: “You could not have discovered this any sooner and the fact that you discovered it now is really great because I have seen such a change in you in the past few months. You are so much stronger than I have seen you and you are going to meet this with that strength.”

Stefanie and Doris have been among my biggest champions over the past few years. They are my friends and they are my mentors too. They both encouraged me to go back to counseling and offered their offices for me to work in. Stefanie is my age. Sometimes I look at her as the road not taken: no kids, practicing therapy for as many years as I would have had I not taken a break. Doris is my mom’s age and is a loving, beautiful woman who actually took me out for lunch after Jason’s Bar Mitzvah to celebrate “me” – the mother of the bar mitzvah boy! I am so grateful for these two women as I am for all my friends.

Anyway, through Doris & Stefanie & the rabbi & the audios by his father, Manis Friedman (on Chabad.org), I have been able to let go of the guilt (mostly). I recognize that I’m human and did the best I could with the personality and knowledge that I had. G-d sent me a “correction” which we all get from time to time. Corrections are gifts we get that we may label as “bad” but really everything is One and everything comes from G-d which makes it all good. That may be a hard concept to grasp, and that is what gets us into trouble and in need of correction and why we say the Sh’ma so many times a day. There is no Other, G-d is the only One. We may see our corrections as “bad” but they are really sad (and we may need to mourn), or they are devastating or a huge interruption, but in the end it’s all for the best and the correction helps in our tshuva to recognize Oneness again and realize it is all good.

I am grateful to have as devastating a correction as I’ve been given. It really motivates me in a way I may not have been motivated with a less devastating correction. I am also so grateful to have been diagnosed when I did and not before because I do believe I am better able to deal with this now than before and my kids are older and my practice is started and I reconnected with an old friend just weeks before diagnosis who I wouldn’t have had in my life prior to this. I am grateful to have this carepages which I wouldn’t have thought about 2 years ago without experiencing a friend who had used something similar. This carepages not only brings me joy & love through all the friends who log on, but encourages me to write about my thoughts during this challenge and make something good out of it. I may not like this correction from time to time and pray I will make the tshuva I need to make but I know in the end, I can only do my humanly best. And that's all I've ever been able to do.

First Chemo Date Set for 11/10

This is a long, rambling email but it's therapeutic for me so if it's too much for you, just read the first two paragraphs.

So we saw the oncologist today and she set up my first chemo date for a week from Monday. That gives me another week to get ready. Check out wigs, get a port put in by the surgeon - it's outpatient but done at the hospital. My veins are tiny and one of the drugs destroys them. Lovely. Oh and the echocardogram showed that I have a mitralvalve thickening with nodular degeneration (whatever that means). So now I get to go see a cardiologist. Aren't you lucky to be on this email list and get all these details? (It does help me to report to you all and know you care - so just delete if things get too whatever.) Oncologist doesn't know about hearts but she thinks it's nothing and probably just some inflammation or scarring due to an infection I had at some point. Still, I'm going to the cardiologist to just see what he says. It won't postpone my chemo tho.

Geoff and I went out for lunch after the appointment at Severinos - very nice. Yesterday was our 20th anniversary so we went out. Surreal. It may be the denial but it's hard to really believe this is our life and we are now in this club.

You may know I used to enjoy using the Tarot. Well, you also may have learned from me how to figure out your Growth Cycle card (remember that? the one that you're in from one birthday to the next?) Guess what my card is until my birthday in May? The Death card! It's really funny because my teacher always said that people think the death card means they are going to die but when she studied this by looking in the obituaries, it turned out that people didn't die in their death card year but in their Lovers year (relationships become the focus) or the year that was their birth card (the energy they came into the world on, they left the world on the same energy too.) So I was thinking this morning about the death card when I was walking with Summer in the Pogonip and how much this is a Death/REBIRTH for me. How many times did I say to myself, I love to walk in the trees but I never do it and here I was this morning finally doing it because death is knocking on my door. Doesn't take many people to need that kind of a kick in the butt to exercise regularly or do things that they like doing, but I guess that's what I needed at least to go walk in the trees. Anyway, I definitely feel like this is a rebirth for me. Am I nuts? How am I going to manage the "chemo brain" and every other horror I keep hearing about? I don't know but each thing that comes before me I know I just have to go through. It's strange how the mind can deal with things. When first diagnosed, I felt like I would rather die then go through chemo. But now, I know I have no other choice (I'm really beyond a natural cure) and I have to go through that chemo gate and so I mentally get used to the idea. No breasts at all? Well, I'm getting used to that possibility too though I still have a slim chance of another story. I also still think maybe by next Monday I'll find some natural cure like the pepper, garlic sandwich I read about on the internet and I won't have to go through this chemo gate....and radiation gate and surgery gate. But first it's the port gate - oh, darn, no, it's the MRI assisted biopsy gate! Tomorrow! Fun.

But best of all, in a couple of hours, I get to go see 4 clients in a row and forget about myself for awhile and get absorbed in their sacred struggles. I'll end my day of work feeling refreshed, knowing I can really help someone else.

So, that's the story for now. I'll keep you posted next week for another addition of the continuing saga of Melissa's Rebirth.

Surgeon Update & Please Allow for My Feelings

Well, we really liked the surgeon and he does do most of the breast surgeries in town.

What I liked about him especially was that he was the only one so far who told me that there was a chance to shrink this tumor down enough to just do a lumpectomy. He's seen it happen before with chemo where the tumor does respond well. It's rare but he's seen worse then me disappear to nothing. So, hearing that changed my whole perspective toward having to undergo chemotherapy. Now I was feeling like, "OK! bring it on!!!"

He also said that my cancer type does respond well to chemo.
And he has done this procedure that I heard about where you test the tumor first to see which chemo it responds to best. Whether I get to have that procedure or not will depend on another discussion with the oncologist.

Looking at my mamogram slides, he doesn't think anything's going on with my right breast at all. The MRI next week will tell more.

On another positive note, my mother-in-law's friend (who's daughter went through this) gave me a great book! "Just Get Me Through This! A Practical Guide To Coping with Breast Cancer". It's really great and answers little questions that you don't even realize you need to ask. For example, now I know I'll be sucking on a Popsicle while undergoing chemo so I won't get mouth sores.

Next week on Tuesday is the CT scan and the breast MRI and I'll write again after those.
Melissa

P.S. I hesitate to write this because I know everyone means well but I need to take good care of myself now. So I have to vent to you all. First, thank you so much to those of you who've let me just be with whatever feelings I have. (You know who you are and you have helped me tremendously.) The hard part for me about this disease is the same thing that happens with having the awful disease of migraines. If I had diabetes, no one would tell me how important it was to stay up and positive and happy - that somehow staying upbeat will heal the disease and having depression or sadness or anger may cause or exacerbate the disease.... Of course it's important for anyone in life to be positive and upbeat. But somehow the undercurrent perspective about cancer and migraines is that our feelings cause these dreaded diseases or make them worse. What I know is true for absolute certain, is that when a person is sick, the brain may not function optimally and the illness can cause depression. When the body is healthy, the depressed thoughts may go away. I saw that happen to me with my most recent cold in fact. So I am indebted to you for not judging me when I go through whatever feelings I go through. And it helps me when you keep the faith that I'm going to be OK and I will survive no matter what I have to go through. Because it's really true. I know that now. I may have to go through 5 or 6 months of literal hell. But one day it will be all over and this will be behind me and I will be just like everyone else and get myself checked for cancer on a regular basis. This is a disease and not a death sentence. Knowing that you care and feel for me is really all I ask. And keeping the faith in your own heart - not necessarily reassuring me when I'm down, but just offering your sympathy, empathy and compassion is really healing for me. Letting me vent, talk, complain, rant and rave, if I need to and still remembering that I will be OK without having to remind me of that is the most healing way you can be with me right now. Thanks for being there. I'm making my list of who I can call and what you offer and what we may be needing in the times ahead. Right now Geoff has been doing it all and he's been great and he loves to cook and going through this hasn't made a whole lot of difference in what he's been doing already. My mom's getting me house cleaning. I know who can take Aimee or Jason in a pinch. I know who will bring food for me if Geoff needs a break and who I can turn to for bone broth. I also know who will go with me to doc's and who would run and get me anything. I know who will take over this writing if I need to hand it over at some point. I also know who can come and help with Geoff's parents if they need him when I need him at the same time. I feel truly blessed to have such a strong circle of friends and family who I can count on and who love me and want to do for me. Thank you. I'm sorry but I just had to get the "feelings" stuff off my chest. I don't want to feel like I have to be upbeat at the times that I don't feel upbeat. And I don't want to feel badly about myself when I'm not able to be upbeat and I don't want to feel worried about hurting myself if I don't feel upbeat. And I don't want to be told by anyone else that going through cancer treatment turns negative people into positive ones. (no one said that but the implication is there) I know I'll get healing from this and of course it will make me stronger. But truthfully, I have had lots of physical challenges already in my life - though this one takes the cake - and I know how strong I am, have been, and can be. And my diet has changed many times over the years trying to help myself with my migraines so this is just one more time. I don't want to focus any more on what I could have done, should have done, and what caused this and how maybe it was my personality and my denial. I just want to focus on getting through the next round on this journey. So I hope that gives you some idea of how you can help me in ways other than the ones I know I can count on you for.

Settled on an Oncologist

Hi All,
Just giving you an update. BTW, it's much easier for me to email than to talk on the phone. Especially since I caught a cold on Saturday.

The oncologist we met with todaywas excellent. Her practice specializes in breast cancer which is 60-70% of what she sees. I liked her more than the Stanford tumor board. She was thorough and pointed out a couple things that even the Stanford guy didn't. Which was that there was a spot on my right breast in the mamogram that they dismissed as benign and so she's going to look at that closer with the further tests I will be taking. (CT, MRI) Plus, she's going to get permission from the insurance co. to cover a blood test to rule out the Ashkenazi gene. Being that my mom had it and I'm under 50, (barely), it gives me a 12% risk of having the gene. 10% risk and the insurance company will pay for it. Anyway, that would just mean a double mastectomy - which would settle my mind since dealing with just one breast seems like it could be a total drag.... Yes, I know, I don't need to make all these decisions right now, but that has been on my mind.

So, I'm looking forward to getting appointments for the CT scan, bonescan, and MRI to rule out any nodules being anywhere else in my body. I should get those tests done within the next week. And then I get to meet with the surgeon this Friday. Supposedly he does the most breast surgeries in this town. Plus, according to my oncologist, she's heard he's got good bedside manner.

Anyway, that's the update and I'm feeling better now that I've got someone like my doc overlooking my case. She spent a lot of time with us. We were in her office from 2:30 - 5. As we were waiting, I kept having to remind Geoff that she'll spend as much time with us as she was doing with whoever she was taking her time with before she got to us!

So, thanks again for all your thoughts, prayers and offers of support.
Melissa

The Day I Was Diagnosed with Breast Cancer

Dear Mom and Andrea,

Mom, since you're out of the country,
I'm emailing, hoping you'll check your email.
Andrea, I can't stop crying so I can't talk over
the phone.
Just letting you know I've been diagnosed with breast cancer.
Just found out an hour ago.
The radiologist says my lymph is not involved.
I have a call in to my MD to get a referral to a surgeon - which is the next step.
What a way to start the Jewish New Year.

Melissa