Saturday, December 6, 2008

Clients Tomorrow

I get to see all my clients tomorrow after not seeing them since I went into the hospital. I'm looking forward to that. Time to focus on something besides my treatment.

Will I wear the wig? Or just be comfortable and not worry about how I look now in my hats covering my balding head?

That should be my greatest problem tomorrow. That and drinking enough water and eating enough food to keep my body going.

Thursday, December 4, 2008

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.

Wednesday, December 3, 2008

Chemo Fears

Will it kill me or just the bad cells?

That's the question I want answered this week. I won't move forward with any oncologist without having some sense of security around that issue. How are you going to protect me from going into neutrapenia again? Have you ever worked with a case like mine? If not, how will you know what to do?

I wasn't able to fully feel confident in my old oncologist when I met with her yesterday and so I am anxiously awaiting tomorrow for a meeting with a new oncologist.

I am really hoping that he can set my mind at ease because I am still battling the repercussions of the last chemo and don't feel physically ready for another round. I am now a week behind on the standard schedule. So I'm feeling between a rock and a hard place - either I wait too long and die from those bad cells or I move forward too quickly and die from the chemo.

Sorry for being so morbid but this week really comes down to that in my mind.

Tomorrow's new oncologist comes recommended by both my good friend Elise who's an MD who sends all her patients to him and would send her family members to him and by my good friend & acupuncturist, Emmy Cushnir. So I'm hopeful that I will finally feel like I can work with someone I can trust. Wish me luck - the appointment's at 3:40pm tomorrow.

And I just don't have the energy to search more than that or to call specialists from all over the country. Maybe I'm crazy not to do more searching but this is all I am capable of right now. Either this new oncologist will be the right one for me or I don't know what I'm going to do.

Tuesday, December 2, 2008

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!

Monday, December 1, 2008

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.

Sunday, November 30, 2008

Post Hospital

My body is getting stronger and stronger. When I first came home, I could barely get myself up the stairs - my legs were so weak. Now I'm taking walks outside. My colon has completely healed and doesn't act up as long as I keep to a baby-food-like diet.

My head has lots of bald spots and that's been hard. Hair is everywhere. I'm keeping hats on all the time now so I don't get triggered when looking in the mirror or when clumps fall out. Once a day, I brush it all away and then put a hat on. The hats are warm. Yesterday Aimee had me try on the wig and I looked really cute. Then it started itching and I had to take it off. But it cheered me up.

I have 2 more days of antibiotics to deal with. Unfortunately they make me nauseous so getting down food and water has been an ongoing challenge. I'm so ready to be done with nausea!

My next appointment with my oncologist is Tuesday when I get to hear her ideas for continuing chemo but keeping me out of the hospital. I'm really not happy with her after my hospital experience so I'm going to make an appointment with another oncologist as well who Emmy (my friend and acupuncturist) recommended. I'm not doing any more chemo until someone can reassure me I won't be back in the hospital.

This morning Stefanie had planned to take me to Torah class (a class I usually go to at the rabbi's Sunday mornings). I'm just worried about hearing too many details about the tragedy. Being fresh out of the hospital and trying to keep a positive focus has been hard amidst such a thing hitting our community. Tonight there's going to be a Memorial Service held in the Vet's Hall.

If the discussion in class stays on what I think it probably will: good and evil, life and death, why tragedy happens, what's G-d's role, etc., etc., it should be good for my healing.

So that's your update for today!