Monday, December 29, 2008

Immune System Recovering


I got a blood test today to check on my neutrapenia. Here are my results for the important counts by date - before chemo, a week after, and today:

White Blood Cell(K/uL)
Standard Range 4.0-11.0 K/uL
12/16-before 6.5
12/23-after 0.9
12/29-today 2.4

PLATELET (K/uL)
Standard Range 150-400 K/uL
12/16-before: 266
12/23-after 102
12/29-today 181

NEUTROPHIL ABS (K/uL)
Standard Range 2.0-8.0 K/uL
12/16-before 4.1
12/23-after 0.5
12/29-today 0.9

So according to my oncologist, I'm out of the danger zone and he expects my counts to be normal by my next chemo date next week (Wednesday). I will get a blood test the day before the next chemo as well. But even though they're still low, my doc says, "If you have any New Year's plans, don't stop yourself..." (Oh sure.)

My tummy's still telling me my immune system is low, so I'm still on the antibiotics. Luckily the dietitian I went to see told me about these probiotics that don't get wiped out by the antibiotics. They are called, "Florastor" and can be found over the counter at the SC Medical pharmacies. I know that they work because I've stopped being nauseous from the antibiotics.

Any other probiotics I tried from the health food stores would work for me only sporadically since I am taking these antibiotics throughout the day. So let's hope that in the next week or so before I get chemo-d again, my tummy finally heals.

I want to write about my diet sometime later when I feel the energy for it. I have a very limited diet right now but am figuring out slowly what I can and can't eat and maybe one of these days I'll be able to hand off some recipes to all those of you who've been dying to cook for me. As it is, I can only figure out easy to make dishes anyway so I can make them myself. Plus, I am so finicky that I can't really plan anything ahead of time and have to wait for the hour before I'm ready to eat. If I don't, I usually end up chucking whatever I've made. I read a cancer recovery cookbook that reassures the support people that this is a normal thing and that they shouldn't be offended!

Friday, December 26, 2008

It's Finally Sunny!

It's a sunny day and I'm feeling better. I haven't gotten a blood test to check, but feel my counts are going up. It's so nice to finally get to open windows and sit out in the sunshine and breathe in fresh air. It's been raining here in Santa Cruz since the day I got chemo - 10 days ago.

I went through some depression around being ill and feeling sorry for myself that I can't go out to eat with my family. (Not to mention all the months I have to go through this, the surgery I'll have to endure and the interruption in my practice that I had just gotten started building only two months before being diagnosed - after a 10 year hiatus to raise children.) Plus, it wasn't easy knowing I was nutrapenic because that scared me silly. I did lots of praying and some crying and felt so lucky when Bailly came over yesterday and prayed for me again.

She retaught me this technique where you go to the book of Tehillim (psalms) and in #119, there are paragraphs where every line starts with a word that starts with a letter from the Hebrew alphabet. So it goes from aleph to taph in order. And what you do is read only the paragraphs that spell out your Hebrew name. So for example, you read the paragraph first where every line starts with the first letter of your Hebrew name and next go to the paragraph that starts with the second letter of your Hebrew name, and so on.

Then, depending on the problem you are praying about, you spell out a couple of more words after your name. For example, she suggested for my illness, to read the paragraphs that spell out the word, "kara satan" which in Hebrew means, "tear/rend satan". (Satan in Judaism is different from Christianity...but I can't give you a good explanation at the moment.) If I'm having problems with my husband, she suggests spelling out the word, "shalom bayit" which means "peaceful home". You can also spell out other people's Hebrew names, using ben (for male) or bat as necessary.

Bailly told me that this technique of reading psalms, not just number 119, helps to effect the "gezera" (decree) in heaven. She even has a tiny book she keeps in her purse and reads whenever she's got a moment - like waiting in line at Safeway! She watched her mother doing this all the time as she was growing up. Here's another interesting thing you can do if you want to: you can also read the psalm that's number corresponds to the year older than the age of your children - which is supposed to strengthen them and give them a blessing.

Anyway, I can read Hebrew but don't always understand what it means. So I have a Tehillim that has the translation of each word directly under the Hebrew word. It was very interesting to read it in Hebrew but understand what I was reading. After I was done, I felt I had pleaded my case quite nicely. I kept remembering what the rabbi once told me about why all those prayers were composed for us: when you stand before G-d, it's nice to have the perfect words to say! After I was finished I definitely felt better about myself and more sure of deserving G-d's blessing.

So either that praying I did or the sun today or the difference I feel in the lump (yay! I love chemo, even though I hate chemo) has uplifted my spirits. Maybe I'll even get to see some clients this Sunday and next week before then next round!

Tuesday, December 23, 2008

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????


Sunday, December 21, 2008

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.


Wednesday, December 17, 2008

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!

Friday, December 12, 2008

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.


Wednesday, December 10, 2008

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.


Monday, December 8, 2008

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!

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!

Friday, November 28, 2008

In Mourning Today

I did go into Thanksgiving with a miraculous chemo result to be grateful for and yet immediately went into terror over the attack of Mumbai. Today I am in mourning for all the lives lost but especially was touched deeply by the loss at the Chabad House there. I learned that the rabbi was first cousin of the rabbi in Monterey and those evil, inhuman monsters left both he and his wife and those who were visiting them, bound for another world. More of their story and photos of them can be seen here: http://www.chabadbythesea.com/news/article_cdo/aid/773691/jewish/Mumbai-Jewish-Family-Killed.htm

So I want to share my story of how I am connected to Chabad and why they mean so much to me. When I finally get to tell the story of the hospital experience, the first thing you'll learn is why I believe my Chabad Rebetzin, Mrs. Bailly Friedman saved my life.

Some of you know I grew up with 2 Jewish parents in a Jewish home where we kept Kosher (2 sets of dishes/silverware - separated into milk and meat & my mom bought kosher meat), we only celebrated the Jewish holidays, we had a Shabbos dinner complete with candles, wine and prayer on Friday nights and many times attended our Temple services that night. I'll never forget my dad's Shabbos presents when we were really little!

We attended a Temple where my siblings and I were bar mitzvah - which included learning Hebrew and leading an entire prayer service and reading from the Torah. We definitely had a good Jewish education thanks to my parents.

Despite all that we did, I felt a strong spiritual yearning and connection that wasn't tied to Judaism at all. In fact, I felt like I was able to learn all kinds of different religions and get something from all of them (which I did later in college). I was a bit anti-semitic now looking back because I didn't understand why I had to be different from everyone else and being Jewish really didn't mean more to me than this spiritual sense I had that was more New Agey and not really connected to anything.

Then I was introduced to Chabad. A friend of mine in high school and I were discussing spirituality and she said, well if you really want to get a great hit of spirituality, you've got to go to a farbrengen. What's a farbrengen? She tells me, it's where lots of rabbis sit around and drink vodka and tell stories.

So one night, we went to a farbrengen. I must have been 14 or 15 because I don't think we could drive yet. I'm not really sure. But this was a total mind blower for me. I saw rabbis that I didn't know still existed, with beards and black hats. The stories they were telling us and each other hit me with a truth I never heard before.

My friend and I were invited to spend Shabbos with a young Chabad couple. It was the first time I knew about what it meant to really do a Shabbos complete with all the rituals for an entire 25 hours and how much that gave to the experience. I felt like I had finally found a way to connect with Judaism in the way I was thinking wasn't there in that religion.

Unfortunately, being young, I was soon off to other things in my life but never forgot about that experience with Chabad. It wasn't until years later and having my own little children, that I found Chabad again - when we lived in Hermosa Beach. And when we moved back to Santa Cruz, I made sure to find Chabad again and felt like Bailly and Yochanon were sent to S. Cruz just for me. They ended up moving here only a few months after we did. And their kids were my kids ages, so Bailly and I hung out together and became great friends and I and my kids learned soooooo, soooo much from them that we'll never forget.

There are Chabad houses all over the world. These people have what's called, mesiras nefesh (look it up, it's a great term). They sacrifice everything and go out to live in places that have nothing that they need to practice their religion which is very rigorous and requires sometimes going out of town to get food and other things along with having to send their children away when they are still little to get the education they need. And why do they do all this? For people like me! Wow!

So when I heard that the Mumbai Chabad house made the ultimate self-sacrifice, I just wanted everyone I can touch to know how much Chabad means to me.

If you are Jewish and so inclined to say a mishaberach for me, my full Hebrew name is Chaya Ruchel bas Shoshana Fruma. Thank you!

Wednesday, November 26, 2008

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!

Monday, November 24, 2008

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.

Saturday, November 15, 2008

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.

Friday, November 14, 2008

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.

Wednesday, November 12, 2008

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.

Monday, November 10, 2008

Got Through the First Chemo!

I'm so glad I got to start chemo today! I am very tired...maybe a side effect, but I really hardly slept last night. Should have taken a valium! Oh well, when I'm tired it relaxes me so that was good. It all went easily and well. Not scary at all. It did hurt when she put the needle into my port but after that, nothing hurt. I got IV anti-nausea med before getting all the chemo meds. And I ate my popsicles when given the Adriamycin. Whenever I felt like it, I would close my eyes and visualize the mass dying away and shrinking to nothing. And of course the little, white angels with their cute brooms. I forgot to add that email to the posts on my past emails so I will copy it below for those who didn't see that one.

The doc says that normally I will feel side effects tonight or tomorrow and if I don't feel any by the 4th day, she thinks I won't feel any. I go to my acupuncturist tomorrow - she specializes in cancer and is the one who told me about the mineral broth. So I'm looking forward to seeing her and getting that nurturing. My doc said I have to get this injection tomorrow called Neulasta which raises the white cell count and preserves the bone marrow. I balked 'cuz I thought you only got that if your counts were low. But according to her, you have to get it every time, the next day after your chemo treatment. And it can make you feel like you've got the flu - I guess that means achey.

Geoff took me to the treatment and Doris picked me up and I just read and relaxed for 4 hours...it was nice, actually. Now I get 3 weeks to recover before the next treatment. So really, it's not so bad, though I hear it gets tougher as it accumulates in your body after many treatments.

I took the remedy my rabbi gave me when I got home - it's supposed to protect against hair loss. Otherwise, I've got two to three weeks before the hair starts falling out and then I'll just shave it off. That will make me feel more in control of this.

My rabbi will be happy to know that Jason wrapped tefillin this morning in my honor, so I felt blessed on two accounts: 1. that it's very special and probably did help me today and 2. that I gave him enough Jewish education that he knows he can turn to that when he's scared. I haven't told you this but as soon as the rabbi came to replace my mezuzza my luck changed and I was able to go get the port put in on Friday instead of having to wait and put off my treatment. So my understanding is that if you have problems going on in your family or house, you need to get your mezzuzza checked for letters missing or parts of letters worn down. He sent my mezzuza off to someone who checks them and in the meantime, he put a new one in. But he said that rather than just getting a new one, it's best to fix your old one since it has all your energy in it. And he recommended I get one for outside my bedroom door - which I haven't done yet.

We are thoroughly grateful for your comments and your support. Your comments are so heartfelt and bolster me. I can't tell you how much it means to me to have you all there. This site is so awesome and it gives me lots of strength to know I can write to you and can see when you look at the site. And the meals we got today! Wow! We're in Italian heaven. Glenna brought meatballs, spaghetti and garlic bread. Liz brought lasagna and a salad. Yum!

I'm looking for someone who wants to volunteer to take over the list of people who want to bring meals and sort of coordinate that for me. I am also looking for novels that I can lose myself in. Any suggestions? Recently I enjoyed reading "Eat, Pray, Love" that my sister and brother-in-law suggested. My favorite books are spiritual - Jewish mystical is best. But one of my favorite books of all time was "Mists of Avalon" so that might give you an understanding of my genre.

Again, thanks for being there and below you'll see that email I sent out about visualizing angels.
Melissa


Subject: CT scan - normal
Date: Fri, 24 Oct 2008 21:35:43 +0000

Just letting everyone know that the CT scan was normal and the blood test for the gene was normal.

So Monday is the breast MRI which will determine exactly what's going on in there and if it's isolated to one breast or not.

Thursday next week is the oncologist and she'll determine the course of action after that. She'll probably tell me that Friday or the following week (first week of Nov.) will be the start of chemo in order to shrink the tumor before surgery. We'll see. I'm using ambrotose now and citrus pectin and visualization to shrink it too. Imagine lots of tiny angels with cute little brooms sweeping up and holding cells and surrounding the tumor and sending it love & singing to it, so it simply dies away and deflates like a balloon! Maybe she'll tell me by Thursday I just need a lumpectomy! Or the chemo will make it disappear entirely. Now wouldn't that be nice?

I'm very happy and relieved today to know this hasn't spread.
Thanks for thinking of me,
Melissa

Sunday, November 9, 2008

Showered and Dressed

I got myself showered and dressed today and off the vicodin. I'm still sore but I took asperin and tylenol. It was rough going in the shower and looking at all the bruises. I feel battered. I can't lift my hands above my head so I haven't started the magic shampoo yet.

I'm so grateful to have my bit of therapy practice going. It got me out of bed, showered and dressed and focused on other people. And feeling like I really can do something well in my life. It took me so long to go back to my practice due to insecurity and remembering how I never thought I was helping anyone. They would all send me thank you notes, etc. but I had that insecurity. So I went to so many classes this time trying to get that confidence. It didn't help until I applied to the insurance companies and people just kept getting referred to me and once I started working with people regularly I realized: ****! I'm good at this! I don't know, maybe it's the experience and the age now but I have a lot to give and can really help people. (when they are open to the help!) One thing I realized after working with some today was that this diagnosis makes me understand how important it is to have friends and not to expect your spouse to be everything you need. I think if people had a broader support network in their lives, they may not need to see me. I'm lucky because I have therapists who are friends of mine!

Anyway, it's hard not knowing whether or not I'm getting chemo tomorrow. I'm planning for it. I've taken the decadron. I've got my yummy mineral broth all made up. I've got my popsicles to prevent mouth sores. But we'll see if the oncologist needs the new biopsy report first.

So that's the update. I wanted to write before tomorrow in case I did have chemo and wouldn't be up for writing tomorrow.

Saturday, November 8, 2008

Slept All Day

My surgery went well and Doris waited for me in the hospital for 3 1/2 hours! She must have arrived just as I was going into surgery because I slept in the recovery room for 1 1/2 hours after a 1 1/2 hour surgery. Wow, your throat gets really dry and you have to cough a lot of stuff up after that.

I got in bed once I got home at 8:30pm and Aimee made me tea and brought me some applesauce. I barely got the tea down and popped my Vicoden (thanks to Lee, my mother-in-law, I didn't have to go to Longs for that on the way home) and slept until 3am when I finally ate the applesauce! Then I slept until 3:30pm when I got up and had Jason warm up some of the soup Doris made us...YUM! The kids already ate half of it before I could get to it. And there were only 2 slices left of the challah that Liz brought us but I enjoyed every bite. And Glenna's bringing us food on Monday and we hope it isn't too spicy. (Her family loves peppers! So I'm dropping the hint now to you all. I think peppers are good for bad cells but my family members have soft tummies.)

Still, I'm not totally sure that I'll get chemo on Monday since the surgeon told me that my oncologist wants the biopsy results in order to know what chemo to give me. And she probably won't have them by Monday. So we'll see what happens when we see her on Monday at 9am. Tomorrow I have 4 clients in a row from 1:30 to 5:30. I think I'll be ok for that but wondering...I just hope no one wants a hug!

Anyway, thanks for all your thoughts and prayers. I'm doing fine and recovering nicely. I so appreciated my surgeon for insisting on Dominican making the effort to get something delivered from San Jose in time yesterday so I could get the surgery yesterday instead of waiting until next week. It was perfect timing for me because I had such a great sleep the night before thinking I wasn't going to have surgery the next day!

The radioactive dye was injected in 4 places around the lump at 11am so that by 4pm, they could see which lymph node the breast drains into for the biopsy. Geoff held my hand during the injections at 11. I told him, "Don't you want to pull up a chair and sit down for this?" He told me no, because then he wouldn't be able to see what's going on! So as long as he keeps his joking to a minimum, I don't mind having him along. His hand is definitely more comforting to me than some nurse’s I don't even know.

Maybe I'll end up wanting him to hold my hand for the first chemo too... We'll see.

Friday, November 7, 2008

We're On Again!!!

My surgeon called me this morning to tell me that we could do both surgeries today. So here we go again.

This is why it's good:
I had a great sleep last night thinking I wasn't going in for surgery the next morning.
I had a wonderful walk this morning with Geoff in the beautiful, hot sun on WestCliff.
I had a good breakfast this morning, not worrying about fasting...doc said it was ok since it was at 7:30am.

So, I've got chicken noodle soup from Doris waiting for me when I get home.
I've got Doris picking me up from the hospital and bringing me home.
I've got Jason being brought home by his teacher after basketball practice.
I've got Aimee enjoyed by Joy and Rebecca after school.
I've got Liz bringing me challah.
I've got Geoff taking me to Dominican at 10:30am to get the dye injected and then he'll take me back home to return at 1 for the surgery prep, Sentinel Node biopsy and Port insertion at 3pm. Doris brings me home around 5pm.
And as I've learned to say from my rabbi, "G-d Willing" all of that will go as planned. And as I've learned from my mom which she learned from her mom (my grandma, may she rest in peace), men plan and G-d laughs.
This week has certainly been one of those experiences.

Thursday, November 6, 2008

On Again, Off Again

Today as I was leaving the house to go to work, at 5:30pm, my oncologist called to tell me that the port surgery was being postponed until next week and chemo is postponed until the following week so that the surgeon can do a sentinel node biopsy at the same time as the port surgery.

I'd had a very rough and anxious day with a migraine, running around, getting everything I would need to start chemo next week. All the veggies to make the mineral broth, the cleaning supplies to clean the house, the medications I needed to take before getting the chemo... Stopping at the hospital to register for tomorrow's surgery...getting poked again twice when they couldn't find a vein to get a blood sample...glad that I'll soon have a port...not sure whether to take exedrin for my headache and ending up taking valium that made me feel depressed and awfully tired and finally taking the imitrex for the migraine and finally feeling better...writing a list of questions for Geoff to ask the anesthesiologist because he was going to call while I was working and I wasn't sure yet if I could eat something for breakfast and what I could eat since my surgery wasn't until 3pm...worried, scared and feeling very vulnerable all day about what is going to happen to my body and how I will handle it all...

And then all of a sudden at the end of the day, at 5:30 as I'm about to leave the house to go see a couple of clients, nothing's happening until the following week!

The oncologist has a good idea though: she wants a sentinel node biopsy before I start chemo so she knows what's going on with the lymph nodes. After chemo, they maybe all cleaned out and then she won't know. Somehow that effects what kind of chemo she decides to give me and whether they take nodes when I finally get the surgery (which she's thinking is going to be a double mastectomy now that they found something on the other side too). If the nodes are negative, then that's good because they won't need to take out lymph nodes during surgery which gives me a chance to avoid lymphodema in the future.

Anyway, it's all such a roller-coaster on my emotions. I took off Thursday next week for the chemo. Now it's not until the following week. And it's very anxiety producing having this thing sitting inside my breast. I do work on visualization every night and every morning. I have a cd that my acupuncturist gave me that's very helpful with really great affirmations which I'll share with you sometime. And still, I have days where I get very nervous about what's going on in there and now I can't wait to get the chemo to stop whatever's going on in there.

So what I tend to do with all this stuff that I can't control (and believe me I would like to ring the oncologist's neck for not thinking of this earlier because I could have had all this done tomorrow had she thought of it this morning), but what I do to help myself through all these disappointments and setbacks is that I tend to believe that everything happens for a good reason and if I don't know what that reason is, then I just need to wait until the reason becomes more clear to me. Maybe it's a good thing because I get an earlier appointment at the hospital and won't have to fast all day. Maybe it's a good thing because it gives me more weeks to take all the immune-building herbs and supplements that I'm taking to shrink this thing and halt it's growth and spread. Maybe it's a good thing because now I won't be nauseous when my parents come to visit and we can go out for dinner. Maybe it's a good thing because now Geoff won't be busy doing something else while I'm needing him. Maybe it's a good thing because now I can go to that class that Dominican has on Monday where they give out free wigs. Maybe it's a good thing because I can go to their nutrition class on Tuesday. Maybe it's a good thing because it gives me more time to use this shampoo that my dentist told me about before the chemo strikes. Maybe it's a good thing because the timing now allows me to possibly go to the desert for winter break if I'm doing alright on the chemo...

I don't know. But this is sure a strange ride so far.

Wednesday, November 5, 2008

Stressful Week

I've had a stressful week. Warning! If you only want to read positive stuff from me, re-read my last email to you! And if you want to send me email telling me to stay positive and upbeat, please don't. It just makes me feel worse. I am as positive as I can be and I don't want to believe that having negative feelings from time to time is going to effect my progress or outcome either way. I do want the freedom to express all of my feelings and that may sometimes mean the negative ones.

So this is why my week was stressful:

1. I was having second thoughts about my oncologist. Several things occurred:
- the MRI assisted biopsy changed from Friday to Monday due to the oncologist's office not being on the ball
- she told me why she thought I'd need a mastectomy over a lumpectomy in her view of things (which painted a horrible picture in my mind when the surgeon painted a positive picture of great response to chemo and then a lumpectomy)
- she overlooked my need to get a port put in so my surgeon had to scramble to find a time at Dominican last minute and now I've got an appointment at 3pm on Friday (which means I'm fasting all day -the anticipation of which is causing me more stress and was totally unnecessary had I been informed of the need for this port even a couple of weeks ago)

2. Because of the last minute need to put in a port at an inconvenient time when Geoff wouldn't be able to take me home from the hospital, I had to get over my uneasiness of asking Doris to take me home. She's the one I wanted to do that, but asking her to do one more thing for me was hard. (She's also going to my first chemo with me). Asking for support isn't easy for me and I'm going to be on a learning curve with it. But once I knew Doris would be willing to take me home, it settled my mind and made me feel better. (she's a friend I met through Chabad who is also a therapist and we share an office and she's gone through these things before just a couple years ago and so has been a tremendous gift to me right now)

3. Because I was nervous about having the 2nd biopsy, I didn't ask what it entailed and just had it in my mind it would be easier than the first since it was a smaller mass they were working on. Being in denial about things seems to be my way of managing my anxiety. Unfortunately, Geoff decided to go with me and it turned into a 3+ hour experience where he had to leave me at the breast center to get a mamogram after the biopsy (with teeth chattering from the stress) in order to pick up the kids from school in the rain. And please, we KNOW everyone and any one of you could have and would have loved to pick up the kids for us and I even had one friend get really angry with me for not calling her (which just added to my stress) but it's all a learning curve for us. We were just unprepared and didn't know it was going to be such a long time at the MRI center and next time we will be prepared with a list of all of your phone numbers or arrange something ahead of time. Since this is all new for us, it's hard for us to fathom what we need right now and prepare for it ahead of time. And we are so used to being there for our kids ourselves.

4. We had a consult with another ocologist which ended up being even more stressful because he gave us all the numbers: going thru chemo gives me a 25 - 35% chance of shrinkage vs a 5 - 10% chance of going the other way and growing instead. Plus he recommended a whole different treatment program and didn't understand why everyone else said I should need shrinkage in order to get a mastectomy and he'd recommend I get one first before chemo. My present oncologist agrees with the regimen that Stanford tumor board recommended which is that I get chemo first in order to have a better surgery (mastectomy). The bizarre part was that this other oncologist who painted such a different picture for us was trained at Stanford! So I walked away with the lesson that my oncologist is fine and what I care most about is the chemo room she has at her office which is really bright and comfortable. And truthfully, numbers and percentages mean nothing. If I lived by them, I'd be happy that breast cancer is one in eight which would give me great odds of not getting it!

Anyway, the following is good news to me though it might seem to you that it's bad: the biopsy of the right breast came back positive to those cells we don't want growing in our bodies. So I've got a mirror image of that bad growth in my body! But the left side is further along and the right side probably got eliminated with the biopsy. It only means that I may decide to eliminate the entire breast if I have to eliminate the left one. Because why be lopsided and deal with that? And it also means when it comes radiation time, I will have to get radiated on both sides. The reason it's good news is that it would be really hard for me to opt to get a double mastectomy if I knew that the right breast was healthy. So if it comes down to a mastectomy of the left one, it'll make the decision about the other one easier to make.

And don't talk to me about reconstruction! Forget it. Unnecessary surgery in my mind.

We went to chemo 101 at the Katz center today and I was able to choose a wig. They give out free ones. But in the meantime, I'm going to try a shampoo and lotion that was created in Germany for cancer patients. My dentist told me about it. Maybe I'll get to keep my hair. If not, though, I've got the wig now.

Another positive: there was a woman at the chemo 101 class that had gone through chemo treatment after her partial mastectomy. And she was struggling. It made me realize that I'm lucky to have chemo first because if it shrinks the tumor, I will have something motivating me to continue on through the difficult parts of it. If I had the tumor out first, I wouldn't have that motivation. So in that way, I'm very lucky!

My parents are coming to visit next week for a few days. It'll be the first time I see them since the diagnosis. I'm really looking forward to it and so are my kids.

Chemo on Monday!

Thursday, October 30, 2008

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.

Tuesday, October 21, 2008

The Saga Continues

had a breast MRI yesterday.
They saw something in the right breast that didn't show up on the mammogram - which isn't unusual, the MRI makes everything look bigger.
A "nodule".
"Doesn't look like a cyst but could be a benign fibroid".
No way to tell if it's the you know what (I'm not using the word anymore)
unless they biopsy it.
But it's too small to biopsy with the ultrasound.
So I get to go back to the MRI and have it biopsied with that.
Fun. MRI is like a Disneyland ride but it's very noisy and it sometimes sounds like drums beating out a pleasant rhythm unless it's goes erratic and then it's hard to not be startled.
My life is definitely not boring right now.
Anyway, I guess they want to find out what this nodule is and somehow that'll effect my treatment.
I'm not sure how yet. It may delay the chemo is what I'm thinking since it takes a few days to get the results of a biopsy...Will they want to do a lumpectomy of that breast first before chemo? I do have questions going around in my mind that won't get answered tonight.
It's possible that Friday will be the MRI biopsy party.
On a positive note, I went to WomenCare today - they have a drop in support group for women with this type of diagnosis in different states of treatment (and in different places in the body and in different stages). The group is led by two therapists. And it's F.REE! It was nice to connect with others who are also dancing with a diagnosis and I enjoyed getting a chance to talk about my feelings with people who understand.

Friday, October 17, 2008

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.