Next Chemo - Wednesday

Hi Everyone,

Just letting you know that I'm still doing fine...though I should probably go back on my vegan diet. Darn. My tummy needs me to go really slow with introducing the old diet back but I really have a hard time eating different food than the rest of my family! We've had some delicious meals from friends but maybe it's all been too much for me: Italian pasta with tomato sauce and cheese and chicken enchiladas! So good! Breads...I even made a challah for Shabbos for the first time in months. But I can tell I've been going a bit too fast in that direction. Oh well, I'm not in the hospital, right? I have to count my blessings. And one of them is that the chemo treatment was so easy last time.

So one more of the A & C and then in 3 weeks I'm on to the T. The T is a 4 hour drip. That's why this time, (my last of the 2 hour drips) seems like a piece of cake, so I haven't asked anyone to visit. Sharol told me she wants to come visit though. So of course, I won't refuse that but won't ask anyone else since I will be saving my favors for the long 4 hour drip next time!

It has been really nice that each time I've sat for my chemo, I've had a friend come and visit me. And when I was in the hospital, my friend Stefanie showed up unexpectedly right in time for my blood transfusion. That was a horrendously scary experience for me and I was going to go through it alone, but Stefanie ended up walking in and made it so much better for me. I was focused on the blood of people I didn't know flooding my body and instead, she helped me focus on all the incredibly kind people who gave their blood for me.

So my friends have been a truly great support to me through this difficult time. Thanks to all of you. And because my chemo has been so easy, I was able to set a time for my parents to visit again. They were here for my very first chemo and the night after they left, I ended up in the hospital, so I've been holding them off for awhile though my dad asks me almost every day to let them know when they can visit again. My dad has been sending me lots of Harry & David gifts and so when I got sent the 3rd turkey on Thanksgiving when we had a huge one cooking in the oven, I came up with another plan for him. I gave him a list of places to get gift cards for me. (Thanks to Stef-it was her idea.) So now I've got some gift cards to New Leaf and Trader Joes! Lucky me. I got Aimee a new thermos (from New Leaf) to take her lunch to school (she hates sandwiches), along with some supplements I needed and organic beans and rice (food I need to be going back to). Thanks Dad!

Next chemo: this Wednesday at 9:30am.

My Daily Doses

I subscribe to a daily inspirational email that Chabad.org offers. The following came to my inbox a couple of days ago:

Daily Dose

Tevet 4, 5769 · December 31, 2008

Release
By Tzvi Freeman

Beginnings are hard. For good reason. If they were easy, we would prowl into each new venture like a snug fat cat.

When you begin pent up in an iron cage, a tiger comes out. A tiger that breaks through the door of its cage and pounces with a vengeance.

Bless those cages, those impossible brick walls, those rivers of fire that lie at the outset of each worthwhile journey. Without them we would be only as powerful as we appear.
------------

So of course I thought of my beginning with this chemo journey...and how it has made me even more powerful than I thought I could be. The river of fire I had to walk through was that first round of chemo and the hospital visit and then the 2nd round's neutrapenia. The continual diet challenges were strengthening too and have forced me to figure out a diet I've never been on before.

With my migraine challenges over the past 18 years, I've tried lots of diets that eliminated lots of things. But never have I eliminated meat, fish and chicken. But since the hospital, my colon does best with beans and rice and tofu. So I figured that out. No dairy, eggs, raw veggies, sugar, wheat...

Last night's brown rice, lentils, zucchini and carrots with a tiny bit of curry powder left my colon silent. My regular condiments are bragg and tamari. I found a tofu made of sprouted soy beans. My snacks are edamame and rice cakes. My treat is rice macaroni, tofu and zucchini with butter and a bit of salt. My other treats are papaya and pears. I've got a rice and millet cereal I eat with a bit of banana and unsweetened vanilla soymilk. I've smashed up white beans and added tamari and bragg and sometimes defrosted frozen spinach or artichoke and used that as a dip with rice crackers.

When I was 30 and working for a psychiatrist who specialized in eating disorders, I got my first migraine on the 405 driving from home in Hermosa Beach to the hospital where I led a group on the eating disorders unit. That was the beginning of my decision to open up my own office closer to home in the hopes that one day I'd have children and not have to commute. Unfortunately, not having a commute didn't stop the migraines.

Why am I writing about this? Because I've been on so many healing journeys before this one due to the migraines. My dad has them and so does my sister. At first I used caffergot which stopped them but made me depressed. Then when I had a miscarriage before my first child was born, I went into a big depression and resorted to Zoloft which I discovered actually took a migraine away! But I wanted to get pregnant again and heaven forbid taking any toxic chemicals while pregnant or breastfeeding.

So that led me to a strict natural search for migraine elimination. I tried many diets through the years, lots of chiropractors, acupuncturists, homeopaths, supplements, meditation, prayer, psychotherapy. They all helped a little bit, but left me mostly suffering. I would get them on a weekly basis if not more often and would suffer using "natural" means and get in bed sometimes for a day or three.

It's kind of tragic that much later when I began researching post partum depression, I discovered that zoloft was totally compatible with breast-feeding and prozac has been ok during pregnancy. That's not to say that I would have risked it, knowing where my mind was at at the time, (and they hadn't validated it's safety back then) but it was sort of meaningful to me when I discovered this remembering that zoloft helped my migraines. Especially since I was adamantly and righteously against anything toxic and chemical for so long and allowed myself to suffer needlessly (along with my family). Luckily about 5 years ago I finally got myself some Immitrex and about 2 years ago I finally started trying out different SSRI's for help with migraine prevention. Celexa has been working well and also helps me with sleep.

So here I am today, a reformed Holistic Nazi, taking daily meds and allowing the most toxic of all chemicals to be inserted through my port (which I think leads to a vein going directly to my heart-yikes!) and have had to endure so much radiation to let the docs diagnose me. I have to continually remind myself that as my good friend who's a cancer survivor told me over and over: chemo is my friend. It may be that when I stopped taking my (favorite natural supplements) Ambrotose and Plus a few years ago that these bad cells did proliferate. But I also continually remind myself that my answer right now is in complementary medicine and not in alternatives.

So please don't offer me any alternatives. I've been down the alternative road so many times before with my migraines that I know that it is a road of suffering for me. I am happily now combining the two: natural and toxic to good result and am happy I went through the hell I did in the beginning of both of my major healing journeys in this lifetime because it has helped me to know that the balance between natural and toxic is where I need to be. I can't let go of either. I need both of my daily doses right now.

Chemo Next Week!

I never thought I'd be happy about it but yes, chemo is starting again next week - on Wednesday. I got the ok from the gastro doctor who says my colitis is 50% improved since I was in the hospital. She wants me back on the antibiotics but has cleared me to do chemo next week. She believes that most of my digestive problems are from the chemo, not the colitis.

So here we go again but under better care this time and wiser for the experience. A new chemo regimen, a new anti-nausea medication, a new start.

Tests Were Easy

I won't know the results of the CT scan until after 3:30pm today.

But the test-taking was really easy yesterday and of course my room number was a 9, (no surprise there) so this is part of what I need to complete before I see my success.

There was no ulcer in my stomach - just gas - so I'm now taking Prilosec again which really helped when I took it this morning.

I'm just waiting to hear whether I'm back on antibiotics or just the Prilosec for awhile. And of course, whether chemo or surgery is my next step. If it's chemo, I now have a gastro gal watching over me! I feel very safe with that and look forward to that challenge again, if it's in my cards - in other words, if it's HaShem's plan for me!

I'll let you know as soon as I know, but if it's after 4:30pm, then you'll have to wait for Shabbos to end since I do turn off my computer for that 25 hours. I still answer the phone though and I'm getting really sick of watching TV, so if anyone wants to visit me, anytime, please just come over! Or call first.

It's Geoff's birthday today, so we're looking forward to some good news. But at this point, I'm learning that any news is good news if I just have my view expanded a bit.

The Higher Purpose

After some anger and crying last night, today has shifted my perspective a bit on this whole seeming set-back.

It's actually a good thing that I'm getting these tests. I was soooo frightened about going back to chemo. Maybe that's why I can't digest anything! Anyway, getting the tests definitively answers both myself and my oncologist about the most important question in my life right now: whether going forward with chemo is safe or not.

I will have that answer by Friday.

And best of all, not being able to go forward with the chemo has made me actually look forward to the time when I will be able to.

So how's that for a higher purpose to all this?

Tests and More Tests

I really haven't been able to eat right since the chemo a month ago. I thought that was just normal for someone going thru chemo. Then I ended up in the hospital with something seriously wrong. Then I got out with antibiotics that everyone was telling me was causing my problems eating. Then I finally got off the antibiotics and nothing changed - except for being a bit less nauseous. That's when I got the new oncologist who was able to really hear what I was saying.

Yesterday the gastroenterologist told me that she thinks my colitis was caused by having nutrapenia (depressed immune system) and then eating something that had bacteria in it. She's had several patients in the hospital over the past month with the same type of colitis that I had in my CT scans. They didn't have chemo - they were immuno-suppressed from asthma medication or other things.

She convinced me to go through an endoscopy where they take a camera and go down my throat into my stomach to rule out any ulcers. If there's an ulcer and that's the only problem, then it's easy to solve. She wanted to do a colonoscopy to take a biopsy (which would let her know exactly what blew out my system) but I'm not healthy enough for that so she convinced me to get yet another CT scan. She needs to see if my colon has gotten better since I was in the hospital. If it hasn't, I need to get back on those horrible antibiotics (which I was on for 2 weeks but she normally recommends someone like me to be on them for 4 - 6 weeks). If my colon is better but just not completely healed, then I may not have to go back on the antibiotics. Then she'll just treat my symptoms until I completely heal.

In any case, I can't move forward with my treatment to eradicate these bad cells if I've still got colitis going on. I can't have chemo and I can't do surgery. So that really scares me. Whatever progress I've made in that area may be lost. Still, I just want to feel better and be able to eat normally again with no pain, so whatever she tells me to do, I'll do. Tomorrow. Thursday I'm going back to Dominican for more tests.

Chemo Postponed

First I have to let you know what I wore to see my clients yesterday! Aimee wouldn't let me out of the house without the wig. So I wore the wig with a hat over it. I thought it would be less shocking to my clients anyway.

So I am so happy to have this new oncologist. He has been incredibly responsive, warm and caring. Once he realized I haven't been able to eat for a month since I started chemo, he told me that I can't do chemo yet. I am now taking diflucan for thrush which showed up on my tongue but sometimes can take over the entire system. If I don't feel better by next week for chemo, we may have to go to surgery first.

The plan is to see a gastroenterologist tomorrow at 3pm. I haven't had a gastro doctor see me yet! None even when I was in the hospital. So we're hoping that doctor will shed more light on the CT scans that were done in the hospital that diagnosed the colitis. If that's not enough for the doctor to help me, then I may have to have a scope done to see what's going on with my stomach and why I can't eat.

So pray that the diflucan is all I need to start eating again!

A New Oncologist

I've got a new oncologist. Feels like a new lease on life. Thanks for all your good thoughts, wishes and prayers. My tummy feels better too. Resigned to the baby food diet I have to be on right now and probably for the duration.

So next week starts a new chemo regimen in a new office with a new doctor. I took some time tonight worrying that I made the wrong decision but my dad helped me think it through and yes, this doctor has a lot of pluses. So I'm not going to rethink it anymore. On to better things.

The Hospital - Part 2

For the next 4 days I peacefully slept it off and was inaccessible and hallucinating. Poor Geoff was there every day from 8am until 7pm advocating for me. Luckily Jason was never done at school or sports practice until 7 anyway and Aimee had lots of people who wanted to take her home from school until Geoff got home. It was hell though. It wasn’t until Friday that I could even talk or think straight. I didn’t talk to or see my kids for 5 days.

Once I got on the right pain relief, I was transferred to a new room, so of course I looked at the room number for answers. This time I was in room #9. That worried me. It’s my Lifetime number and I was concerned about my Lifetime number being one of the most common years that people die in. In my stupor, I didn’t remember that I wasn’t looking at my Growth Cycle, I was looking at my room number!

9 is the Hermit. The Hermit is about taking time by yourself to become more introspective so you can reflect on what you still need to complete before you can achieve success. So now my task was to understand what I needed to complete to get out of this hospital! Once I realized I wasn’t going to die, I kept wondering what the completion was going to be.

On Friday when I could finally communicate and think clearly, I asked Geoff, “Wasn’t Bailly here that first day before I got on the right medication?” I remembered her there while I was writhing in pain and her telling me she was going to pray for me. So I thought about her all Shabbos until I could call her. How did she know I was at the hospital? No one knew that soon.

After Shabbos I found out that the day I went into the hospital, Bailly was supposed to meet with Andrea. Geoff had called Andrea to pick up Aimee from school so when Andrea had to cancel her meeting with Bailly, she found out I was in the hospital. When she got there, she relieved Lee and Geoff to get something to eat while she sat and prayed for an hour and a half. After she was done, my doctor came and gave me the right pain medicine! (That's why I say she saved my life. People have died from their colon bursting. It's rare but can happen.)

It wasn’t until Friday that I fully understood what my diagnosis was. They gave me a CT scan and diagnosed neutrapenia induced colitis. They were telling me that now my white counts were back up but I needed a blood transfusion for my red counts. So on Friday night I got the transfusion and was so much better on Saturday.

Over the weekend one of docs told me I was ready to leave on Monday and all he needed to see was that I could eat. I hadn’t eaten anything but my IV fluids for 4 days. But once I started eating even broth, my colon would act up. So that was worrisome. I knew I’d eat better at home but how could I convince them to release me?

I did have a “hospitalist” overlooking my case. She was such a blessing. She was a family practice doctor who’d come in and actually sit down with me. Listen to me. Take her time to answer all questions for as long as I needed. If you ever land in the hospital, get your family practice doctor to send one of these. She got permission for me to bring food from home, along with making sure many other things got done that the hospital was falling through on. Too bad she wasn't sent until Friday.

So on Monday, I just wanted to go home but when my oncologist came in she told me it was her opinion I needed to stay one more night because she hadn’t seen me all weekend. I told her I disagreed with her that I would do better at home. She told me to let her be my doctor and her instincts are usually right. I told her I shouldn’t have to pay for her not seeing me over the weekend and asked her by the way, what happened when I first got here and had no pain management for 12 hours? She said she wanted to move slowly and not go to the heavier drugs due to them causing constipation. So I told her that her instincts were wrong in the beginning and they are wrong now and it would be more healing for me to leave today. She finally agreed to discuss it with the other doctors on my case and if they agreed, she’d release me. I had to wait 6 hours for her release.

I have never before in my life spoken to an authority figure with such personal power. I felt like a different person because it was totally out of my normal character. So maybe that was the higher purpose of my going to the hospital: to take more control of my healing journey and stand up to my doctors when I know I need something and they aren’t responding. I don’t really ever know G-d’s purpose but just having the perspective of G-d controlling even the bad things in my life for a higher purpose does help me to get through them.

I'm going to see that doctor again this morning for the first time since the hospital. She will give her opinion on what I should do next with my next treatment. Wish me luck that I can still be as self-advocating as I learned to be that day I was released from the hospital!

The Hospital - Part 1

I woke up the 7th day after chemo, Sunday morning, feeling tired and nauseous, unable to eat or drink without everything going right through me. I had Geoff put a brand new mezuzah from Israel on my bedroom doorpost. I went to see clients and had 3 great sessions.

That night I went to sleep with a tummy ache that turned into such pain that I wanted to die. By 2am, I woke up Geoff and told him this might be one of those times when we’re supposed to call our doctor & go to emergency. By 3am, we arrived at Dominican.

It’s hard for me to go back into all this again – so I will start with some Torah, inspired by the rabbi’s class yesterday on parshat Vayetze (Genesis 28:10-32:3). This is the parsha with the Jacob’s ladder dream where he goes to Haran to work for Laban, marries the 2 sisters and has all his children.

My hospital experience came to mind when the rabbi pointed out that G-d sends us to the worst places for a higher purpose. Ya’akov (Jacob) had to go to Haran which at the time was the worst city on earth (where the people were corrupt and terrible to each other). Haran is literally, “The Anger”.

So I remembered that when I first got to the hospital, I was wondering what G-d’s purpose was. As I lay there writhing in pain for 12 hours with no relief, I looked at the room number to try to understand what the higher purpose was. It was the number 12, which in Tarot is the Hanged Man.

Why Tarot? During the time between High School and finding Chabad again, I was on a search for my spiritual home. I studied Tibetan Buddhism, Taoism, Confusionism, Christianity, Christian mysticism, Hinduism, I had a guru (the one mentioned in the book, Eat , Pray, Love) and I meditated in an ashram, I went to Israel to study Hebrew before attending a year of rabbinic school at the University of Judaism, I studied Zohar with Daniel Matt at the Graduate Theological Union in Berkeley, and I finally ended up with a masters degree in Transpersonal Psychology (which brings together spirituality and psychology) where I wrote my masters thesis on using the Tarot as a counseling tool.

The sephirot of Jewish mysticism are often compared to the Major Arcana of Tarot but I never have connected Torah and Tarot. I used Tarot to map out the Fool’s journey through the human condition. I used the spiritual and psychological principles of this journey to help me navigate through my life.

So here I was in a holding pattern at Dominican with no relief in sight, trying to understand the significance of it all. Ok, what’s the Hanged Man about again? Oh yeah, turning yourself upside down to get a new perspective on an old issue… What is that issue?

Luckily, my doctor finally graced me with her presence and I got the medication I needed for the pain. So I thought, Oh, the pattern was about not going to get the doctor. She was right next door the whole time. Why didn’t any of us think of going to her?

Stay tuned for Part 2.

Wondering About Me?

On the 7th day after chemo, when my immune system was shot to nothing and all the fast growing cells in my body were dead (including those lining my digestive tract), bacteria overgrew and attacked my colon. I went into the hospital for a week. It was quite an experience. I may write more about it later. But for now, I just wanted those of you who didn't know, to know what was happening. I got released from the hospital today and am so happy to be back home and feeling on the mend.