More About Me

I have to also write a bit more about me today!

Yesterday was the absolute best day I've had in a long time. I decided that I needed to get out to Capitola to WomenCare to get names and numbers of people who offer free massage to cancer patients. But lately, it's hard to motivate myself to get out the door, let alone drive all the way to Capitola! (It's so far! Yeah, probably a good 15 minutes away for goodness sake!) So I thought, "who could meet me out there for lunch? That would get me out there!" Then I remembered that Stef had met me out there for lunch before and so I called her. She said, "How about we meet at my office and drive together?"

So luck would have it that she had 2 late cancellations and we met at 11am and had until 3pm! What fun! We went to WomenCare, to GoodWill and this nice 2nd hand store next to Goodwill where I got a new hat, new pants (all my pants are falling off of me), new earrings and a new hat. Then we went to the bead store because I need to always change over my earrings to clip-ons due to my darn immune system making every pierced earring hurt my ears.

After we got back to her office, I went to pick up Aimee at a friend's house to take her to the rabbi's house. Bailly had gone to Minnesota to visit her son and to a Bar Mitzvah and so she asked Aimee if she would help the rabbi with the Hebrew school for the little kids. Wow was Aimee proud that she was asked to help! They made Humantaschen for Purim.

While I waited for Aimee to be ready to go back home, I decided to get some exercise, walking around their neighborhood. I remembered that Andrea had offered to walk with me sometime so I headed over to her house just to see if she was there and wanted to walk. Just as I came to her house, there she was walking down her walkway to go out on errands. Lucky me! She would rather go for a walk with me! We went to a quarry by her house that has a gorgeous view and one of my favorite sounds these days: birds singing.

So now I've got 3 days each week where I have a friend appointment. Mondays are for Bailly. Tuesdays are for Stefanie. Wednesday afternoons are for walking with Andrea.

Before this diagnosis, I rarely took the time to see friends or get out of the house. Now it's become a priority. I also made a list of all the things I like to do so I can remember to do them when I get bored or lonely.

My list so far:
make sugar-free cookies/chocolate
go on UTube to listen to my favorite musical artists
write
get a massage
get a DVD or search Netflix to order one
go for a walk with a friend or borrow Aimee's iPod (thanks Nancy!)
call someone to talk to them over the phone
make new earrings/go to the bead store downtown
listen to Chabad.org audios
go to the trees or to West Cliff

The list will get longer as I remember what I like. That's also a bonus of going through this diagnosis and treatment, I'm beginning to remember what I like.

I'm also setting up appointments with therapists who've been recommended by WomenCare or Katz Center. I'll find someone who feels comfortable to me and who's on my PPO list. I'm finding myself telling them over the phone that I'm not really in crisis and seem to be handling all this pretty well, considering...but I just want to have someone to sort through things with when the darker stuff creeps up...and I want to make the most out of this time - get all I can get out of it.

I keep looking at the calendar and seeing how close I'm cutting the end of treatment to our trip to Hawaii. When I see my oncologist on Wednesday, Geoff and I will ask him about the pros and cons of going through the last 3 rounds of chemo faster. Whatever's best for my system is what I will go with, but my mind's been on that a lot lately.

So that's more about me. I hope those of you who are in Santa Cruz are enjoying this glorious day. Sun and majestic, puffy white clouds in the sky here today.

Nutrapenic

My doc just called with my blood test results and I am nutrapenic again. So for the next few days I've got to lay low and be careful not to be around any germs. He says my counts will go back up on their own after a few days but next time, he'll change the chemo to account for my sensitivity. So until next time, think of me with lots of strong white cells circulating around my blood stream.

Thanks, I am a bit nervous.

Over the Hump

I'm feeling better today though not back to myself. The nausea is better and potatoes, pears, rice, and whey protein powder are my friends. This is day 7 and last time I went through chemo, I ended up in the hospital in the wee hours of the 8th day. (Reminds me of a very good cd I recommend called, The 8th Day - look it up on itunes - it's a very good rock band made up of my rabbi's cousins.)

I'm not having some of the symptoms I had after the first chemo - which helps me see that there were signs I was going south the first time - but I thought I was having normal chemo symptoms when I wasn't. So that's been useful to see - what's normal chemo and what isn't.

I am grateful Geoff is a bull. He doesn't like me to call him that so I changed it to an ox. If the tables were switched and he was sick and I had parents who also needed me, I would just collapse. He's been so great and the kids are just thriving. He knows how to entertain them.

Nutrapenia is supposed to hit day 7 thru day 10 so I'm being extra careful what I do, what I eat, the supplements I take to keep the immune system up and functioning while I continue on with the antibiotics. Hopefully by the end of this week, my tummy will be all healed and I'll be able to get off of the antibiotics.

By the way, I really appreciate all your posts - they really make me feel like I'm some strong, uplifting, spirited, amazing woman! Of course you don't see me when I'm asking G-d why me and walking around with a sour look on my face all day from nausea. Still, it's nice to think I can be strong enough to go through all this. In my darkest hours I wonder if learning to access my strength on a deep, spiritual level is the reason I'm going through all this. But can't I learn that any other way????

Hanging In There

Battling nausea and the ever present challenge of getting enough food and water in. I think the new nausea med put me to sleep and helped me not have nausea for one day. The best gift I've been given (after getting a very legal prescription from my doctor) was a tincture of medical marijuana from a very good friend who knew just what I needed. And she reminds me that the more this chemo challenges me, the more it's working. So I'm keeping that in mind. No pain, no gain.

The most important thing though is that my colon has been doing really well and not bothering me at all. I have been even eating bread and pasta and meat...in very small quantities to test. Doing ok so far. I will get my blood tested tomorrow morning for my immune levels.

Had to cancel my clients...and can't even visit with any of you! All I can do is eat, drink, sleep, watch the food channel. Go figure, it's the happiest thing I can find on TV these days.

Very Hopeful

I just got back from my chemo in the new office and am actually feeling rather high. I don't know if it's just that I love the new doctor and everyone on his staff, along with that fancy chemo room, or if it was the new combination of chemo drugs or the fact that I am finally not nauseous.

So we'll see how it plays out in the next few days. As I recall, I may not have felt bad the first day I was home from the first round. I think I didn't feel bad until the 3rd day or so. But this nausea med is supposed to work for a longer time than the last one.

Anyway, just wanted you all to have that update. As I get farther away from the hospital experience and all the stuff I had to go through, I'm seeing more about the blessing in the curse. It took all that I went through to come to a place of peace and acceptance about having to go through chemo. I used to see it as something that would kill me or something I'd rather die than have to go through. Now I see it as something that will be hard, but will kill the bad cells. And so that's my focus now.

So while I've got this positive energy going, (who knows how long it will last!), I'm going to share with you a quote from the book I'm reading now called, "My Grandfather's Blessings" by Rachel Naomi Remen, M.D. Her Grandfather was an orthodox Jew and the rest of her family were high achieving doctors. So he was the person who showed her what Shabbos was and lit candles, etc., etc. Even more, he was someone who was able to address her sensitivity and gave her the inspiration she needed later in life to understand & deal with the health challenges that she had to go through. He died when she was 7 years old before her health challenges.

So her grandfather would also share with her the stories from the Torah which she loved. The quote I'm going to share with you has to do with the story he told her about Jacob's fight in the middle of the night - he thought someone was attacking him and didn't know until dawn came that he was wrestling with an angel. Once he knew it was an angel, he told the angel that he wouldn't let him go until the angel gave him a blessing. The angel touched him where he was hurt from the struggle and he had that hurt place the rest of his life as a reminder. So finally (can you tell I'm high right now?) here's the quote: "Perhaps the wisdom lies in engaging the life you have been given as fully and courageously as possible and not letting go until you find the unknown blessing that is in everything."

So yes, I will have this experience for the rest of my life. I will have all the scars and reminders. May I continue to fight with all my strength and get the blessing at every turn.

Chemo Today

Hi,
Sorry I've been absent. I'm back on those yucky antibiotics that cause nausea...the anti-nausea meds make me sleep...some days have been better than others and that makes me wonder if the food I eat causes the nausea. I went to see a dietitian yesterday and she just mostly confirmed that I am doing what I need to do to eat well. I keep reminding myself that these antibiotics are healing my gut so that makes it easier.

Today from 2 - 4pm I go to chemo again. I'm worried, but hopeful. One of the hopeful things is that I'm going on a very expensive, new nausea med called, Emend. I've also been reassured by my oncologist and the chemo nurse that this chemo session will be different from the last. They are taking out one of the chemo drugs I had last time. I will also get my blood checked regularly to catch the immune drop earlier. I am also reassuring myself that I'm already on antibiotics so maybe I won't get any bacteria infection! Unfortunately, Jason has a cold. (He always gets them when he goes through finals.) So wish me luck I don't catch it and no one else in the family does either!

The chemo room at this new office looks like a spa. They call it an "infusion room"! They have dvd players and these huge comfortable chairs and even private rooms. So it helps me to visualize a positive experience. And I'll only be there 2 hours this time instead of 4 like last time.

Geoff's going to go to the doc's appointment with me first and stay to be with me while I get hooked up and then leave to pick me up when I'm done. I don't need anyone to be with me the entire time, but if you happen to be in the neighborhood at that time, feel free to visit.

So I will try to write you all tonight or tomorrow to let you know I'm Ok. I even told my clients I'd call them if I was feeling alright and set up sessions this Sunday since the holidays are coming and otherwise it'd be awhile before I'd see them. So, I'm assuming I will sail through this one...or at least do better than last time! Think positive thoughts about me!

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.

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.

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!

Fantastic Result

Well, I went through total hell from my first chemo - the hospitalization included. But when I went to see my surgeon today he said my tumor has shrunk 60-70%! In his 30 years of practice, he's never seen a result like that after only one round of the chemo.

I love my surgeon - he keeps me focused on the positive. And believe me, there's still lots of negative body reactions I'm dealing with....

My friend Bailly took me shopping for head coverings today and she really helped me pick out stuff that would look good on me. I'd have been lost without her. She's my rabbi's wife, so she's quite familiar with head coverings!

Something interesting she told me is that she's not going to call me "Allison" anymore and instead will call me by my Hebrew name, Chaya. Which is so appropriate for my success in this journey - Chaya means Life!

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.

Got My Hair Cut

I had brushed through my hair before coming home and so much of it came out it was really just another devastating thing to have to deal with. The next day it was completely matted, like I had never brushed it at all. I was not sure if I had the energy to deal with my hair today but I did and am so glad. Geoff took me over to Supercuts this morning and they give a free cut to chemo patients! So now I have a really cute bob and it uplifted my spirits tremendously. I didn't want to have to deal with head coverings and such yet. So I'm very happy. (I just couldn't shave it all off yet, with all I've been through and I thought that this way, the kids would ease into my having no hair very soon.)

And I get to go to the acupuncturist today and asked my friend Rosey to drive me there and back. I just feel too weak to drive myself. So I'm feeling really taken care of today and so happy to be out of that hospital.

Can't wait to write you all about my hospital stay because it was a real challenge but a great learning experience as well.

Chemo is Nasty and Brutal

If I ever needed anything to break through the very last shreds of my denial I got it this week. The diagnosis I've been given is so surreal that many times I've been kinda not believing this is really happening to me. Well, until I got chemo. Horror of all horrors. How am I going to get through another 4 treatments? All those questions came up that have been bubbling under the surface: why me? why this? why now?

Anyway, I made it through and am grateful to know I won't be doing that again for a couple of weeks. Two weeks to recuperate. And truthfully, it's good to know that the worst of it is pretty much over after 5 or 6 days.

Tomorrow's day 7 and I'm still a bit nauseous, tired, weary, and vulnerable. But I'm actually thinking I can see my clients tomorrow. I have 3 with a break in between the first and second. Unbelievable.

So that's your update for now.

A Bit Better Today

I changed my anti-nausea med and it seems better...yes, Joan, it's good for morning sickness too.

I've been just sleeping it off and enjoying the escape.

It's Been Rough

Just trying to manage the no appetite and the meds for nausea that make me constipated and want to sleep all day. I hear it takes about a week to get through this. Thanks for all your concern. Just trying to make it through by figuring out how to manage the anti-nausea meds while getting enough to eat and drink when nothing sounds good. Sleep has been a great escape.

I was surprised today when I ate some Thai food Geoff brought home...wouldn't have thought that would appeal.

A bit of apple juice in a large glass of water is working for fluids.