Friday, February 6, 2009

A Happier Update

I thought it would be good to leave us all on a happier note before the weekend. Especially because I had dreams last night about doctors coming up from behind me and scaring me!

Yesterday I saw my 2nd new client of the year and guess what? She was a new mommy! I got to hold a tiny baby!!!

Geoff just told me matzo brei's ready. How lucky am I? He gets the kids ready for school in the morning and I get to eat what he made for breakfast.

And last, I get to go to Bailly's house today to help prepare food for Sunday's "Celebrating the Jewish Woman" program she's putting on at Pasatiempo. We have to cook everything today before Shabbos starts and the sun goes down and she doesn't use electricity for 25 hours. Lee offered to take me on Sunday and I'm so looking forward to it. Today I get to help and see sweet Margie helping and Doris and 11 year old Yitzchak who's back from Minnesota for a week where he lives with his grandparents and goes to school (since there are no schools for him here).

It's a happy day here in Santa Cruz.

Thursday, February 5, 2009

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.

Wednesday, February 4, 2009

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, 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.

Monday, February 2, 2009

The Surgeon Weighs In

I had another easy chemo with only one day of pain and am planning to see my clients on Thursday and Sunday of this week. I think it's the neulasta shot that brings on the incredible pain all over my upper body around my lymph nodes. It's a shot everyone gets the day after chemo that is supposed to increase your white cells by pulling them out of your bone marrow. Everyone told me about bone aches with this shot, but I experience pain in the base of my head, my throat lymph nodes and my upper arms. So again, I am unusual where it comes to immune stuff.

We went to check in with my surgeon today. I always enjoy seeing him. He's very calming and seems like he knows what he's talking about from all his experience for so many years. His office is really not much. Makes me wonder if he doesn't need to make it fancy due to his reputation in this town.

Anyway, my biggest question to him today was: is it better for me to get this surgery now and get rid of the potential for these cells to travel elsewhere and then finish up with the chemo after the surgery to clean my body out? He told me it doesn't work that way. It's better to continue on with the fight, rather than take time off for surgery and let those wayward cells multiply. That perspective really helped.

It also helped when while he was checking me, in astonishment, he called over Geoff. I wasn't sure if he was going to have Geoff check me too or what! Instead, he just showed him how small he thinks the center of the tumor is right now compared to how it was when I first came in. He said the word, "2 centimeters", which would make it less than half it's original size. What had been tripping me up in my own checks was that there's so much scar tissue. He knows the difference between what scar tissue feels like and tumor feels like.

The other thing he settled more in my mind was the option of having a lumpectomy vs. a mastectomy. Even tho the lumpectomy sounds so much better, I have more chance of recurrence in that side due to it's size. Knowing my history, I'm not one to have to deal with continually checking and wondering. So I'm more settled to having double mastectomies. Though the right side could be saved, it too had a nodule and I don't want to have to worry about recurrence - at least the lymph on that side don't need to come out. The lymph on my left side do need to come out since the sentinel node was positive...which is worrisome but gives me more of a chance of not having recurrence.

So I'm getting ready to tell my entire mammogram story from when I got my first one at age 37 to what the heck I was thinking that led me to not getting anymore until age 49. Stay tuned for the next update sometime this week...