Fargo Family Update

Hi Everyone,

This is my monthly check-in. Not too much to report at this point because I'm just before all of my tests. Wednesday I have chemo (Avastin only - I'm on Week #5). Thursday I go for a CTScan. Friday I go for a PetScan. The following Monday I have my doctor's appointment to review all of the scans and figure out where we go from here. I'm hoping to be able to take a bit of a break - even a few weeks. Chemo is hitting harder and harder, which I've been told, it does. Each week I get a bit more nauseous and it lasts a bit longer; fatigue is hanging in there a bit more, too. I think my most annoying symptom is the fact I constantly have a chemical taste in my mouth. Some days it's stronger than others, but it's always there. It's just yucky.

In all of the ways that truly matter, things are going very well. I'm feeling functional and the rest of the family is doing well.

I had a wonderful time in Boston. It was fun getting to see the family. And, although I'm generally not all that nostalgic (OK, maybe I am that nostalgic), there were a bunch of moments that really got to me. It was just so in-my-face and at the top of my brain that I could have been absent from… Thanksgiving dinner, the Bar Mitzvah, the party. All-in-all a very rollercoaster, bittersweet thing. It meant SO much to me to be a part of it. It was also very heartwarming to be aware of how much my relatives were grateful I was there, especially my cousin. To know that people like having you around is flattering, regardless of the situation.

The trip also had a very relaxing bonus - I had three days without my kids! The first morning I had the opportunity to sleep in. I would have if I could have. Unfortunately, my body is used to being up at 6:00 a.m. So, rather than actually sleeping in, I just kind of stayed in bed and eventually woke up enough to read in bed for a while. I refused to step out of the bed until after 9:00! I got to visit with my Mom and brother in addition to everyone else. It was nice. By the time Sunday rolled around and it was time to come home; I was ready to see my kids (and my husband). They missed me a bunch, but, as always, Howard did a great job taking care of them and turning the situation into an opportunity for them to have fun. The first night I was gone they got to stay up as late as they wanted and watch "The Grinch" on TV. I guess they both made it until almost 11:00. Rachael fell asleep right at the ending and then woke up and made Howard & Allie fill her in on what she missed (she must be my daughter). He also let them sleep in bed with him - or at least that was the plan. In Howard's words, they beat him up. Let's just say both the girls are "active" sleepers. About an hour into the night, after getting hit by multiple elbows, and kicked several times, he got head-butted in the face by Allie, resulting in a bloody lip. He abandoned our bed for safer quarters and slept in the spare room. The girls woke up in the morning and never even knew he'd left. The next day he took them to the movies. My girls also told me that Dad let them have Cheetohs - a rarity in this house. I know they missed me, but I think it was a really good thing for them to learn that I could leave and that I'd still come home.

Our next big trip is coming up VERY quickly. As I mentioned, I have a bunch of tests coming up this week, followed by a doctor's appointment the next Monday. Then, on Tuesday, we're all heading out to Connecticut for Christmas. Allie and Howard have time off of school and when Howard told his Mom, she and Ken decided to fly us all in for the holiday. I'm looking forward to seeing his Mom's new house and to seeing all of the relatives who have been SO supportive through my ordeal. I'm a bit apprehensive because I think it's going to be emotionally draining. There's no way I can see these people and not feel/express the gratitude that I have for all they did for us. When things were at their worst, Howard's family really rallied (I'm still getting prayer cards from his aunt). It was one of the most touching things I've ever personally experienced.

On a lighter note, we'll also get to experience the "Christmas" side of things with the girls. When Howard & I got engaged, we agreed that we'd spend Thanksgiving with my family, Christmas with his, and that should we ever have kids, they'd be raised Jewish. We've tried to stick to the family commitments, but the past few years it hasn't really worked out -- either for Thanksgiving or Christmas. We're handling Christmas as "Mimi's holiday". Something we don't celebrate, but she does. We've pre-arranged the Santa situation and have explained that since they're Jewish, they won't be receiving presents the way other kids who celebrate Christmas do (see sidebar below). However, since they're at Mimi's house and Mimi celebrates Christmas, we're pretty sure Santa will leave a token present for each of them. Allie's been questioning the true existence of Santa Claus - we've said that he absolutely exists, but have skirted the specifics. Rachael's all over the Santa thing. She CANNOT wait. You can tell that she's got a bit of ethnic background though, because instead of leaving cookies and milk for Santa like the other kids, she wants to leave him bagels with cream cheese. I asked her if she thought Santa needed some lox with that and she replied, "Yes, I think that would be nice!" She also thinks it imperative that we leave a bowl of water and some food for the reindeer. She's determined that if she listens hard enough, she'll hear the reindeers' hooves on the roof when they land. I keep reminding her that if she's not sleeping, Santa won't come! The girls are also hoping to see snow while we're in Connecticut. I have to admit, as much I don't ever want to see snow again, seeing them play in it would almost be worth the cold. I think this will be a family vacation that we will all remember.

Sidebar: early one morning last year, when Allie was in pre-school, she announced to me that it was almost Christmas and that pretty soon Santa would be coming. She was very excited. In my own defense (for which there really is none), I am NOT a morning person. I am about as "not a morning person" as one can be. Without thinking I replied, "Oh, honey. Santa's not coming to see you… you're Jewish." Luckily, Howard overheard the whole thing and was able to step in and do damage control. Otherwise, (and possibly still) I'm sure it's the type of thing she'd be working out in therapy 20 years from now.

I'll try to post something quickly after my doctor's appointment (12/20). However, since we leave for Connecticut the next day, I may not have time. If not, I'll post as soon as we return.

May you all have a happy and truly healthy holiday season.

Love,

Deb

Hi Everyone,

Today definitely did not go as anticipated. I've had a recurrence. I have three different areas on my lymph nodes that showed up positive for cancer in both the CTScans and the Petscans.

We're off tomorrow for vacation. Upon return I'll be starting a new chemotherapy regime. I've been forewarned that one of the new medications will give me horrible acne and that the worse I break out, the better the medication is working! Not looking forward to that, but definitely hoping that the new meds will stop the cancer in its tracks. I won't have new scans until I've completed two full rounds of chemo (six weeks each) - so, not until late March.

One of the other treatments my doctor recommended is to refer me to a surgeon out in Nebraska that has had some revolutionary results with my type of cancer. He would remove the cancerous masses while simultaneously dousing the areas with chemotherapy. When we get back from Connecticut I'll be looking into the feasibility of such an operation. I doubt my Florida Medicaid would cover such a procedure, but need to check it out. And, if it doesn't, need to find out what my options are.

So, please stick me back in your prayer groups. Looks like we're in for another bumpy ride.

Hope you all have a wonderful holiday. I know I plan to enjoy this vacation!

Love, Deb

Happy New Year!

In spite of the news of the recurrence, we had a wonderful time in Connecticut. There was snow on the ground when we landed. Rachael started yelling, "Snow! Look, Daddy, snow! A whole flock of snow. Look at the flock of snow!" It was all very cute. The first thing she did when she got out of the car at her grandmother's house was throw herself down in the snow and make a snow angel. Then she held up an arm to be pulled up and said, "Uh, guys, a little help here?"

Allie loved the snow also. They got to go tobogganing. The snow was too fluffy for good snowballs or to make a snowman.

I survived the cold… and I didn't even come back with bronchitis! I was able to really relax and take care of myself. Howard's Mom even let us sleep in most mornings - it was nice.

I couldn't get over all of the gifts my kids received - cousins, aunts, uncles… so much stuff. Then again, I shouldn't be surprised by their generosity - I've seen it before, just in a different manner.

I was thrilled I got to see Howard's Mom and brother's new house. It's absolutely beautiful. There was a ton of space for all of us and the girls made themselves right at home. Actually, so did we. I'm so happy Mom and Ken were finally able to get out of the city and into something of their own. It's just gorgeous.

For the most part, we only shared my news if someone asked. We really didn't want to bring down Christmas for everyone. That part was kind of hard. I usually wear my heart on my sleeve and it was difficult to have everyone thinking I was fine when we knew the truth.

We spent Christmas eve across the street from his Mom's at his aunt & uncle's house. They are very warm and generous people and it was a pleasure spending time with them. After the festivities we came home and Allie and Rachael left bagels and cream cheese and cookies for Santa. They were so excited in the morning when they got up and found it all gone. Santa even left them a note on the back of the note they left for him. It was really fun.

Christmas day we went to Howard's cousins' house. There were a ton of people, including lots of kids. Rachael had a blast playing with their new puppy (she LOVES dogs). Allie surprised me - when I asked her what her favorite part of the day had been I expected her to say presents, but she didn't. She said it was playing with her cousin, Noah. I thought that was pretty cool. The day after Christmas, my friend, Jan, and her family came in from New York to see us. She has two girls, just slightly older than my girls, and it was the first time they'd ever met. They all played wonderfully together. I think it made us both really wish that we lived much closer to each other.

We stayed put a lot and were really good about not running around. It was truly wonderful to see everyone and to be able to say, "thank you" in person.

I think we were about ready to come home when we did, but it was still hard. It's always rough coming off of a fun vacation and having to head back into the daily grind. Initially, I also think it was really hard for Howard to come home because this place now represents "cancer" to him. It was like entering the house forced him back into reality.

I was supposed to have chemo the following day, but it got cancelled because there seems to be a problem with Medicaid paying my doctor's office. As a result, I had to do chemo as an outpatient at the hospital (same building, different floor, but 3x as long for the same procedure). At the time I was told they were still waiting for my tissue test for Erbitux to come back so I'd only be receiving one drug. I tolerated it pretty well - usual side-effects, nausea and fatigue, but nothing too major. In the back of my head I was wondering what happened if the tissue test came back negative (it needs to be positive for me to legally get the drug). I soon found out.

On Monday I called my doctor's office to find out if the insurance had been straightened out and when/where I needed to go for chemo. I discovered that my blood test did come back negative, so I had to go see the doctor. We went yesterday and discussed our options. There's a really good chance I can be included in another case study that will give me the Erbitux, in spite of my negative status. However, I have a unique complication here (see if you can follow this): in order for Medicaid to cover my expenses each month, they have to exceed $1384. If I get into the case study, the study pays for the drugs, so my cost drops radically. End result may be that my cost is lower than $1384, which would mean I'd have virtually no health insurance (to cover doctor's visits and prescriptions). The other complication is that the study drug would have to be administered in my doctor's office and CANNOT go through outpatient administration and, right now, my doctor's office won't administer anything until Medicaid pays up! Adding to my frustration is the fact my kids have virtually no health insurance - I had to wait for an open enrollment period to apply for the state insurance, which started 1/1. I sent my application off via certified mail on Monday. I received a notification in the mail today that I have to show up for a court date at the end of January in regards to my kids being dropped from Medicaid due to the fact I had assets they originally told me were exempt! I keep trying to tell myself that these are just details; none of it's important. I need to leave all this crap in God's hands and just deal with the things over which I have control. However, that's easier said than done and all of this stuff is a real pain in the butt.

The other thing we discussed with my doctor yesterday is the possibility of my going out to Nebraska for surgery. There's a doctor there that's been conducting a procedure called "Intraperitineal Chemotherapy." Basically, they'd open me up, chest to pelvis, drop my body temperature to a hypothermic state, cut out the cancer, clean out the area, wash me out with chemotherapy, and then continue doing the wash internally for five consecutive days. After I came home and recovered I'd probably be on chemo for a year. The hope would be that I'd then be healed. I asked if he had any other young patients who'd undergone the procedure and he said yes. Apparently, it worked for her for almost two years, but she has since had a recurrence. It was really a slap in the face for me to actually hear him say, "there is no cure for colon cancer, but we are finding ways to buy more time." At any rate, we're seriously looking into this option as well but have no idea if/when it will come to fruition.

So, as things stand right now, I'm trying to get into the clinical trial for Erbitux. I have to be off of chemo for four weeks before I start, so I'm attempting to focus on the break and be happy about it. Hey, I was hoping for a break in chemo before I found out the cancer was back! And, my doctor has told me not to worry about the break. He said the fact that the cancer exploded in the four weeks following surgery is not relevant because I had no prior treatment and they "stirred things up" when they did the operation. I trust my doctor, so I'm going to just try to enjoy this time as much as possible.

I keep going back to the book that my friend, Candy, gave me when I was in the hospital. The author had lung cancer and had been given less than 30 days to live. He went out and started researching what survivors had done to live. Every type of cancer has some small percentage of survivors. I just need to stay focused on the fact that if I do everything within my power (body, mind, spirit), I have a really great chance of beating this.

Emotionally I've been on a real rollercoaster the last few weeks. At first I was in shock. Then I was just sad. I was able to stay really strong because Howard was a wreck and I couldn't afford to fall apart at the same time he was! But, whenever he's in a bad mood, it always does affect me, whether I want it to or not. Yesterday's appointment helped him out a lot. He's feeling much better about things. I, on the other hand, am not so sure I am. I'm not depressed, but I'm going through a lot of the emotions I would have thought I would have faced a year ago. I can't stop hugging my kids and I just keep thinking that they deserve a Mom. That's my whole purpose for being on this earth right now - to raise those kids. To at least get them through their teenage years. The reality that I could fight and fight and still lose the battle while they're young has been too heartbreaking to even entertain. I've had lots of thoughts over the last week that I haven't had since I was depressed (coming off of the morphine and the pain patches): just an incredible overall sadness at the "what if's" of not being around. Then, I take a deep breath, and try to re-focus myself. My buddy, Ana, who I was "matched" with when I first started all of this, has been through far worse than I. She's been fighting for going on five years now and, at the moment, she's doing great. I look at people who choose to "die" instead of to "live" and I know I don't want that to be me. We're all dying! It's just a matter of when. I just hope I have the strength to be able to do what I need to in order to stay alive decades instead of years.

It's funny, I've found myself wondering if I'm "OK". You know, the way people say, "How are you? Are you OK?" The answer is, I think I am. I think that all of this turmoil is just something I need to work through. I think to never have a negative thought is to be in pure denial. So, I've been trying to let myself feel what I'm really feeling while at the same time making sure I don't linger here. I think it's OK to acknowledge the thoughts as long as I don't let them control me or take over my mindset.

When I went home for Christmas one of our friends asked me why I did this journal. I thought about it and said that at first it was just a way of communicating information to people but that over time it had developed into so much more. Going back and reading "the book" I realized something totally different. I did this because the book told me to! It certainly didn't say, "post your life on the internet" for all of the world to see. But it said, "keep a wellness journal". So I did. It's amazing how much I've been through in such a short period of time. And, even more amazing, how many things I've already forgotten! There is no doubt that one of the blessings of this journal is that it has been cathartic. I feel tons better now than I did when I sat down to write.

My girls are doing OK. They both got so spoiled at Mimi's house they're also having a hard time facing reality! I can sense they've been a bit rattled by our news. Rachael's started saying prayers for me each night. Allie says she's OK, but has been a bear since we got home. She also got bad grades on her "morning work" two days in a row. We all had a long talk today, so we'll see what tomorrow brings! It's impossible to know when she's rebelling because it's her nature and when something is really wrong. Her biggest fear has been that I'd have to go back into the hospital and that I wouldn't come out. We're trying to prep her for the Nebraska thing, just in case. I asked her tonight how she felt about it and she said, "I think I want you to have the surgery because I want you to be your 'old self' and be healthy again, but it still scares me a little." This road is not going to be easy for her no matter what we face, but hopefully if she can keep talking through it she'll come out without too many scars.

Favorite Christmas presents… Allie's was the Nutcracker Barbie Mimi got her. Rachael's was actually a Chanukah present - my cousin sent Toys R Us gift cards to the girls and she picked out this HUGE pink stuffed dog that's bigger than she is. For Howard and I it was being in Connecticut for Christmas, with his Mom and brother; having me there and being able to watch the girls have fun. Memere was noticeably absent, but I know she was with us all in spirit.

Hope Santa was good to all of you. May this new year bring health and happiness. It's going to be a rough year, but I keep praying that this is the year I'll be cured!

Love,

Deb

Hi Everyone,

Lots to update since I last wrote. Things were moving forward on the case study for Erbitux. Last week I called the case study person because we were waiting for the lab results to come back on the tissue samples and I hadn't heard anything. Turns out, results had been in for almost a week, but my doctor's office hadn't called. They came back positive! This is an interesting twist. It's a good news/bad news scenario. The bad news is that I no longer qualify for the case study and I've been off chemo (with known cancer in my body) for a full month virtually for nothing. The good news is that my doctor can treat me exactly as he wishes - that means I can get both the Erbitux and the Irinotekan simultaneously (if I'd been on the case study I'd only have been able to get Erbitux and nothing else). Other good news: I don't have to worry about the whole Medicaid fiasco. I still have to get my chemo on an outpatient basis until Medicaid pays the outstanding bills, but at least I know I'll get it. And, I got my month off of chemo - not the way I was hoping for, but it's been nice nonetheless.

I met with a lawyer a couple of weeks ago to discuss the problem I had with Medicaid dropping my kids. I found out this week that she accepted my case (pro bono). As always, there's a twist here. My kids should have full Medicaid for 12 full months from start date, which would mean they'd be covered through April 30th. My hearing was originally scheduled for this Friday. My lawyer has requested that DCF re-instate the rights through the 4/30 date. We should know by tomorrow if they agree or not. She's thinking probably not at which point she'll file a continuance. It could take several months before I have a new hearing date. So, by the time I actually get their services back it may be March or April!!! In the meantime, they are covered, but with a clause that if DCF rules against me I'll have to pay back the money for all services used. As I mentioned in my last posting, I've also applied for HealthyKids, the Florida kids' insurance program. So, hopefully that will come through and I can drop all of the rest of this. I just want to be able to take them to the doctor and the dentist as needed. I don't want them to miss out on all of the routine preventative visits that they should have. Allie hasn't been to a dentist since she was three and Rachael's never been. If the insurance doesn't come through by this Spring I'll take both of them one way or another, insurance or not.

The other issue that my lawyer and I are both concerned with is the fact that the State of Florida has reserved the right to possibly come after me for "fraud" because I had benefits at the same time I had retirement investments. It was their mistake. I have lots of paperwork showing everything they asked for and everything I gave them. However, there is no clear-cut answer as to what happens if I was in violation of their policies even though I was following the advice of a DCF caseworker. Hopefully we'll never have to deal with this one. Oh, and there doesn't seem to be any statute of limitation on when they could decide to pursue this, should they choose to do so.

My lawyer said her agency works closely with another agency in Tallahassee (our capital, for those of you not up on your geography) that handles class action types of cases. With my permission she's given them my contact information to possibly discuss the problems I've had in response to the proposed cuts our Governor has introduced. I've been trying to get a copy of the actual proposal, but haven't had any luck. So far, all of the information I can find is WAY too general to be able to figure out how I'd be affected. At any rate, I'm hoping that my involvement can somehow make a difference. I would love the opportunity to be able to be a voice for those who are unable to speak out for themselves. I'll let you know if anything comes of this. They may not even contact me.

Overall, my girls are doing well. Allie's still not working up to her potential in school, but she's doing much better. When she finishes her work, she always does great. However, she fails to complete an assignment about once a day. I think we'll be able to work through this, but it's frustrating in the meantime. I'm trying to keep it all in perspective. Her teachers say she's a joy to have in class. And, she just brought home her latest report card with all pluses (they're graded plus, check, or minus). She has so many things going on it's hard to figure out what's up with her. It could be dealing with stuff at home (i.e. me), it could be the fact she has a new teacher (her THIRD this year), or the fact that she's expected to do more and at heart she's incredibly lazy. There's also the distinct probability that it's the combination of all three.

Rachael has been doing really well at home. She's been wanting to do "homework" like her big sister, so I've started her in a workbook that teaches letters and numbers. She can now recognize all of the capital letters and write some of them. We're working hard on lowercase letters still, but she doesn't seem to be grasping them yet. I've not pushed. She's got plenty of time to figure it all out. She sounded out her first word the other day (Mom) - I was so proud!

Howard's doing well at school. They've now reached the part where they pick a 20 second scene out of one of their favorite movies and have to insert themselves into the video as if they'd actually been there when the scene was filmed. This is one of the things we saw students working on when we toured the school on our initial visit. I think it's incredibly cool and can't wait to see his finished product. Also, it's great to see him working so hard on something that he's enjoying.

I'm happy to say we're getting into visitor's season here in Florida. My friend, Allegra, was able to stop by for a very quick (couple of hours) visit this week as she blazed through on a business trip. Our friend, Drew, is coming in from Ohio tomorrow and will be with us through Monday. In a couple of weeks my cousin's daughter, Jen, is coming for the better part of a week, followed several days later by my other cousin, Ken. Approximately two weeks after that I'm hoping my friend, Allegra, will be able to come back down (again) for vacation - a real visit this time. I'm always so thrilled to have company. I love getting to visit with everyone - and we see a LOT more people now that we live in Florida than we ever did in Ohio. So, if you're looking to get away and want to come see us, let us know!

I can't believe I forgot to give you the update on the surgical possibility. The Nebraska doctor will not perform the procedure on anyone who has lymph node involvement. Sugarbaker in DC is no longer performing the procedure himself. However, he did refer my doctor's office on to two other physicians - one in North Carolina and the other somewhere in Pennsylvania. My file was sent off to both. The North Carolina doctor got back to us this morning and said I look like a promising candidate! Haven't heard from the PA person yet. The nurse I spoke with at the Carolina office this morning was wonderful. Normally I would set up an appointment and go see them at this point. However, I explained my situation and asked if I could receive more information via telephone because I didn't want to have the burden of the travel expense only to find out 2 minutes into the visit that it was something I didn't want. She's sending me a packet of information that I should receive tomorrow. She's also including the doctor's e-mail address so that I can ask all of the questions I have upfront and then decide if I need to go meet with him. The other positive news is that she said patients are usually scheduled for surgery 2-3 weeks after the initial consultation. Sugarbaker had lists that were sometimes up to six months long. So, the 2-3 week timeframe is fantastic - it means he'll be ready if/when I'm ready.

I have a ton of questions about the surgery before I decide it's for me. The #1 reason I think I want it is that it offers the hope of a true cure vs. just "buying time". I want to be around decades from now, not just a few years from now. And, if I'm on chemo the rest of my life, even if chemo works great, it's eventually going to take its toll on me. Some of the things I want to know at this point are whether the doctor believes he can "cure" me, how long after the surgery I'd have to be on chemo (and what type), what would be removed during the operation (I know Sugarbaker took out everything that was non-essential: what's deemed "non-essential" to the doctor may be very different than what I deem "non-essential"), how many operations of this type has he done, how long has he been doing them, and what type of long-term survival rates does he have? I have more questions than that, but that's just a few of the things I'd need to know before I subjected myself to the torture that would be inflicted. Also, I care how long I'd be bathed in the chemotherapy - I found out that the Nebraska doctor only douses his patients for a matter of hours of the operation; not the five days that Sugarbaker did. So, I'll let you know what I find out and if this path leads anywhere.

Personally, I'm feeling terrific. I've been off chemo for a month; my head is starting to clear and my body is much less achy. It's nice to know that if I can ever get off of the drugs I actually have a chance of feeling "normal" again someday. Also, when we got back from Connecticut I started exercising. I've been walking and doing Qigong every single day, regardless of weather or how I've felt. I know that exercise is a key part of my recovery. It's just something I genuinely dislike and think is a pain in the butt. However, if it can keep me alive, I suppose it's worth doing! At some point I need to add weight-training, but I'm just not there yet. This is about all I can handle for now.

I have mixed feelings about starting back on chemo Friday. I'm very relieved because the idea of having untreated cancer in my body is a very scary one. On the otherhand, it's been so great NOT having chemo; I feel so much better. Also, I'm bracing a bit for the side-effects of this chemo. The Erbitux is going to give me severe acne all over my body (can you say "yuck") and the Irinotekan is going to make my hair fall out. Last week I was in the shower and lost several clumps of hair. When I saw the doctor I asked him if it could be from the one Irinotekan treatment I had a month ago. He smiled and nodded and said that was about the timeframe it usually took to hit. I lost a bunch of hair for about five days straight and then it stopped. However, if I lost that much from one treatment I'm not going to have much left after several. I'm planning on getting my hair cut short within the next two weeks. I'm also going to set up an appointment through the American Cancer Society to get a wig so that I have it if/when I need it.

Also on Friday I have an appointment with a social worker/counselor through the hospital. She's going to do an evaluation for me of the family's needs. I want to get Allie and Rachael into some type of counseling. I also don't think it would be a bad idea for Howard and myself. I think I probably could use a support group more than "counseling" per se, however, I'm not ruling anything out. It's really the kids that I want to make sure have an outlet.

The other day I had just dropped Allie off at school and was driving in the car with Rachael. Out of the blue she said, "Mommy, I know a good thing." "What's that?" I asked. "I know something good. If you die, we still have Daddy. He'll take care of us and that's a good thing." I laughed and said, "Yes, yes he will." "Mommy," she replied, "if that happens I'll miss you… not too much, but a little bit." It was a very funny statement, but at the same time, it let me know that she was thinking about things and working through them in her own way.

As for Allie, I think I may have discovered a way to make her behave in the morning before school. It's worked for two days now. Instead of getting her lunch ready at night the way I always have done, I wait. Then, in the morning, I let her know that if she wants me to pack her lunch she has to get herself ready, be nice to me, and not be so obstinate that I don't have time to make lunch. That means that if she behaves badly she has to eat the cafeteria lunch. If she cooperates I have time to make her just about anything she wants (within reason). So far; so good. It will be interesting to see if this works on a long-term basis.

Well, it's getting late and I still have to walk and do my Qigong. My neighbor gave me a treadmill that she was looking to get rid of and it's been a godsend. When it's late or the weather is bad, I can hop on that instead of trying to walk in the neighborhood.

I think I've covered everything important. I'll try to write more as updates occur. Please keep praying for me. I won't get new scans for 12 more weeks, so I really won't have any way to judge how it's going.

Love,

Deb

Hi Everyone,

Wow, time really flies. I go for Treatment #4 of the "new" chemo regime tomorrow. This cycle has really kicked my butt. I'm sleeping lots more. I'm far enough into it now that I'm starting to adjust to my new schedule. I get chemo on Friday, sleep most of Saturday, and then start functioning again in limited amounts on Sunday. By Monday I'm semi-functional and just when I start to think I'm feeling better, they zap me again! My doctor warned me that the Erbitux would likely cause severe acne - and boy was he ever right. I'm taking it as a positive sign - he said to pray I looked like a leper - that the worse the acne, generally the better the drug worked. If that's the case, there shouldn't be much cancer left! I'm covered. I was prepared to look really goofy for a while, but I wasn't prepared for how painful it would be. My face is sore (especially my poor nose), but it's my scalp that is really the problem. I never would have thought about it, but having acne on your scalp creates an interesting dilemma - how do you sleep? You can't rest your head on a pillow! The itching is driving me insane. My doctor put me on an oral antibiotic several days ago and I think it may be starting to help a bit. I have another doctor's appointment next Thursday for him to check in with me to see how it's going. We'll see how I'm doing at that point in time. If it doesn't clear up a bit by then he may have to cut the dosage back a bit. Not sleeping is definitely a major problem!

The one relief I've found for the itching is washing my hair with Neutragena T-Gel shampoo. The active ingredient in there? Coal tar! Can you believe that? Coal tar. At first it smelled to me like I was putting asphalt in my hair. However, the mind is an amazing thing. This shampoo is such a positive in my life because of the relief it brings it now has a refreshingly "herbal" scent to it. I think it's just my mind's way of not thinking about the coal tar. At any rate, I'm now VERY clean. On a really itchy day I can take up to four showers. On a good day I may only take two.

I spoke with my doctor about the surgery. He needs to speak with the surgeon to decide what they collectively think will be best for me. I was very encouraged by his thinking. He discussed with me some of the questions he has and some of the things he's wondering about. It let me know that he's been thinking about my case and that he seems to be on the very cutting-edge of some of the latest research. He talked to me about testing the tumors post-surgery to find out about missing chromosomes and also about utilizing them to maximize the effectiveness of my treatments. All of this is still ethereal stuff - some of it is in research stages, other stuff is starting to be done, and we don't know at this point what, if anything, would be done in my case. However, it made me feel good that I could tell he'd been thinking about it all. As for where things stand right now, his office is in the process of trying to get an approval from Medicaid to pay for the operation. They need to jump through a bunch of hoops in order to prove that there are no qualified surgeons in the state of Florida that would be able to do the procedure. Unfortunately there's no time limit on what's involved in order for this to happen or when I'll have any type of answer. I just need to sit tight and hope it moves through procedures.

The other information I found out about the surgery is that the 5-day post-surgical Sugarbaker procedure is no longer being done. This is actually good news because it means that the post-surgical chemotherapy bath would be for only two hours. I'd be in the hospital for only 7-10 days and obviously the recovery time would be considerably shorter than if I were in the hospital for a whole month. I've done some research on the procedure and all of the doctors who have been involved in the research and from everything I've found, it looks like if you have to have the procedure done, Wake Forest is the place to be (either that or Paris, France). At this point I have enough information that I've decided that I'm pretty sure I do want the surgery. Although there is no set timeframe, the most likely, assuming I can come up with funding in time, is that I'd finish out my 12 week chemo cycle, be off chemo for 4 weeks, then have the surgery. That would put it some time in June.

Those of you who know me well know that I've frequently made the comment that there's not a prayer I've prayed since 7th grade that hasn't been answered. I don't always like the answers I get, but I always get answers. Even after all these years of God answering me I have to admit there are times when my faith momentarily weakens a bit. Last week I was having one of those times. The side-effects of the chemo were getting to me (especially sleep deprivation) and I was just feeling yucky. I was trying to stay positive, but was getting caught up in the physical (itchy, itchy, itchy). I know in my heart of hearts that God has been with me throughout this journey, however I asked that he show me some "obvious" sign that he was there and that we'd have the support we'd need to make it through this. For those of you who don't believe in signs (and those of you who do), here's the answer I received today:

When I got home this morning I had to call my Mom for something. She told me that her best friend had sent her a check (on our behalf) to help out with "whatever we needed". It was an extraordinarily generous amount that will make a huge difference. While I was wrapping up my conversation with my Mom, my neighbor came by to see if we wanted to come hang out. I told her I couldn't because I had to clean my kitchen floor (we had two broken glass incidents within a 24-hour period) but that we'd come by in an hour or two when I was done. A half hour later she showed up at my door again, floor-cleaner in hand, and announced, "I've come to wash your floors!" The two of us together detailed my kitchen, so that we can all walk around barefooted again without worry. When she left it was naptime and I actually got some sleep! When I woke up, I took a shower and the next thing I knew, Howard was telling me we had company. There's a woman I met through my neighbor's "Mommies Group" that I saw again briefly at a neighborhood meeting. She called me last night and left a voicemail message for me to see how I was doing and see if there was anything she could do to help, but I hadn't had time yet to even call her back. She and her husband came over and brought four big bags and a huge box of food and paper goods that their church had collected for us. To say I was overwhelmed was an understatement. Not only that, but she's organized people who want to cook meals to help us out. I'm grateful I was able to say that that's not necessary at this point, however she assures me that they'll be there for us when we need them (i.e. when I have the surgery). Howard and I both had a great visit with them and I thought I was fine. When they left I found myself shaking like a leaf. I had such a surge of adrenaline in my system, I just didn't even know what to do. So, of course, I called Vicki (my friend who's husband had cancer). She assured me that I wasn't insane and that this was a normal reaction when someone's done something that emotionally touching and overwhelming!

There have been many other generous things others have done for us recently. I continue to just be totally blown away by everyone's generosity. However, having three things like that in one day was really mind-blowing. To me it was about as obvious as signs ever get.

We finally got Allie and Rachael in last week for a counseling evaluation. The counselor said that Rachael is blissfully ignorant and is a very happy child who is dealing with everything incredibly well. Allie's doing okay, but definitely has some anger and denial issues going on. We're going to have Allie speak to her on a monthly basis for the next couple of months just to stay on top of things and make sure she continues to be okay.

I'm happy to report that making lunches on a morning-to-morning basis for Allie has worked magic for her behavior. I'd say she's well-behaved about four out of five mornings and those mornings she's not she pays the penalty (i.e. has to eat school lunch)! I think part of the improvement is that she's settling back into things. However, having something to hold over her head definitely helps!

I know I probably have more to update, but it's late so I have to end this entry. I just had to share my day with everyone. I promise I will try to do another entry within a week or two. I know my brother is headed off on vacation next week, so I probably won't get anything else out here until the first week of March.

Oh, and one last note, my doctor has agree to do mid-cycle scans. If cancer is reduced or the same, I'll finish up the 12-week cycle. If, God forbid, it's continued to grow, then we scrap this regime and try something else. Scans are scheduled for the week of March 7th.

Thank you all for your continued support and prayers. It's been awesome hearing from folks I've been out of touch with for some time and I'm continually touched by the outpouring of emotion and good wishes in the e-mails I receive.

Love,

Deb

Hi Everyone,

My apologies for having such a gap between postings. This is actually my third attempt to sit down and write. The other two got started but were never finished.

I'm going to start with the most recent and then go backwards. That way you can stop reading wherever you like! I think it's going to be a long one.

First and foremost, I got my mid-cycle CT Scan results back. We're headed in the right direction… the tumors are shrinking. They are still there, but are now about half the size they were (give or take). This is GREAT news and trying news. Great because it means the chemo is working and the cancer is reducing. Trying because it means I'm now on this chemo regime indefinitely.

I found out several weeks ago that surgery is not an option. As a matter of fact, one of the postings I never completed was a total rant when I got news from the surgeon that he wouldn't do the surgery because I had lymph node involvement. This made no sense to me because the research discussed lymph node involvement and my e-mail to him addressed the specific issue of lymph node involvement. However, upon further query, he informed me that it's the fact that I don't have cancer in my peritoneal cavity the precludes the surgery - that's the purpose of that surgery - to remove peritoneal cancer. He said that the surgery would not be effective for lymph node involvement only.

So, we're back to square one. We've been doing LOTS of research and actually come up with some new information. I started researching lymph node cancer instead of colon cancer. It yielded nothing productive in terms of treatment, but I learned a lot about the lymph system! My original thought was that since I only have cancer in my lymph nodes it would make sense for them to treat me as if I had that type of cancer. The reason that doesn't work is because I have colon cancer cells in my lymph nodes. If they were to use the drugs they normally use to treat lymphatic cancer they would probably ineffective.

However, here's what I learned about my lymph system that I did not know before. One of the main purposes of your lymph system is help the body fight infection/disease… including cancer. As such, it acts as a type of filter. So, the fact that there's cancer within the lymph system, actually makes sense and is (in one way of looking at it) a positive sign because it means the lymph system is doing its job. Obviously, it's simultaneously scary because your lymph (a clear fluid that travels throughout your body back and forth between the nodes) could bring the cancer with it to a different location within its travels! The other thing I learned is that one of the reasons that exercise is SO important in fighting cancer is that it moves the lymph, which flushes the system, and is a requirement for it to work efficiently. The other requirement is plenty of water. This information has motivated me on days when I really don't want to walk. I just think of my lymph sitting there and that it needs my help to function efficiently. It sounds goofy, but psychologically it's made a difference. I've also been making sure I get lots and lots of water. It's something I had been doing originally but had gotten a bit lazy about in recent days.

The other information we discovered that I had heard bits and pieces of in the past, but never fully researched is ph balance. There is a theory that at a ph level above 7.5 cancer cells will go dormant and that at 8.5 cancer cells will die while healthy cells will live. I was shocked at just how much information is out on the internet about this. If anyone cares to read more about it, here are two of the sites I've found most helpful:
          http://www.ph-ion.com/
          http://www.chimachine4u.com/AA.html

I discussed this with my doctor and he said that he had heard of it but that he didn't know much about it. He said over the years he's had several patients who have tried it. Those who've stayed with him have given up on it and decided it didn't work for them. However, he says he's had a number of patients who've tried it who then stopped seeing him. As to what happened to them, he has no idea. He figures either they were cured, they died, or they went to alternative practitioners (probably the most likely of the three scenarios).

Will it work? I figure I have nothing to lose and everything to gain by trying it. My mother-in-law was gracious enough to order one of the kits for me. I should receive it some time next week and then I'll go from there. Worst-case scenario, it doesn't work and I reach one more dead end. Best-case scenario, it cures my cancer and I can get off of the chemo! Now, that's a goal worth striving for! None of this will happen overnight. I figure it will probably take 3-6 months before I start to see any results at all.

I found a lot of the negative press on ph balance interesting and, at the same time, to be very ignorant. I found articles that stated, "Don't you think if it really worked "real" doctors would be using it?" To that I would answer, "no," because they are not educated on it and because according to the U.S. Food and Drug Administration the only thing that can "cure" a disease is a drug. Natural remedies are not amongst the legal prescriptions. I saw postings on cancer boards from people who claimed that the ph diet was nothing but bunk because all it contained only "green juice" and no protein. While I'll concede that the list of alkaline proteins is limited, it still includes chicken breast, some nuts, and a few other items. I would argue that there are many healthy vegetarians in the world who eat well-balanced diets that include plenty of protein (and, as I mentioned, it is NOT a vegetarian diet, although it's pretty darn close). I even saw one statement that if your ph balance exceeds 8.0 you'll die! Anyway, that's all the space I'll waste on the negative sides of all of this. Suffice it to say, I've read lots of stuff on both sides. I'll let you know what I think once I get further into it. I'm going into it open-minded. I figure at the very least it will force me to eat a super-healthy diet for a while, which certainly can't be bad.

I'm still going for chemo on a weekly basis. I have two weeks of both drugs, one week of only one drug, and no weeks off. My hair has kind of been hanging in there, considering how long I've been on the chemo (tomorrow is Week #9). It's pretty thin, but most mornings I can cover-up my bald patches. This afternoon I threw a ball cap on when I went out. I got a wig from the American Cancer Society last month, but am waiting as long as possible before I concede to wearing it. I contacted them again this week to arrange for a beautician to style it for me - otherwise it makes me look like I'm 50 and is just NOT a flattering style. I was bummed they didn't have anything fun that looked good on me. I was hoping to go blonde or bright red. However, my complexion is now so red on its own that both of those colors looked ridiculous on me. I brought my teenage cousin with me when I picked out the wig and when a teenager agrees you can't get away with a funky color, you know it's just not happening! I was told the Erbitux would give me sever acne - and it certainly has. I was on Tetracycline for 30 days and it really did a great job clearing my face up. I still had a bit of a rash, but it wasn't uncomfortable. However, as soon as I stopped the antibiotic, the rash came back in full force. I was only able to go 10 days before I had to get onto it again. Unfortunately, this time things haven't cleared up quite as well. It looks more like a rash than acne. It's a bit itchy and quite sore, but at least I'm able to sleep at night (which I couldn't when it first hit). And, thank god I'm a woman, because it covers up pretty well with make-up.

Speaking of make-up, I went to a "Look Good, Feel Better" session the American Cancer Society had last month. It was kind of interesting. The best part was I got like $200-worth of brand-name make-up for free! I still haven't attended any type of support group. I've thought about it, but haven't felt a real need and really haven't seen any sessions offered that have been at convenient times. Going to this thing kind of made me think twice about finding a support group - the people who were there were the types of stereotypical "cancer patients" you envision when people say "cancer". There was a woman who was recovering from a brain tumor who was so traumatized by the disease she couldn't even talk about it. There was another woman there who had just had her last treatment and was on her way to recovery, but still wasn't upbeat. I found it somewhat depressing. I know it would be most unfair to judge all groups by this one experience, but at this point, it's the only one I've got! If I can find a support group session at a convenient time, I may give it a go and see if there's anything within the experience that I find helpful.

I am still walking daily. I'm proud of myself because I've made it past the 60-day mark, which is usually my breaking point. I've now been doing this since early January. They say by now it should be normal routine and that it should not require effort. However, I've discovered that "they" lie. I've been a couch potato for 30-odd years. Apparently that type of learned bad behavior doesn't go away with only 2+ months of positive replacement behavior. Darn shame… I was hoping it would be "easy" by now!

I am still attempting to either do Qigong or my visualization daily. I'm successful 4 or 5 days a week and I fall short 1 or 2 days a week. I haven't found a way to stick the visualization into my daily morning schedule, which is what I think I need to do to make it work. Then I could just do the Qigong at night without having to feel like I'm falling short.

Other stuff we're dealing with… DCF has notified us that they want all of their money back for the food stamps they awarded us and for my Medicaid for the month of September. I met with my lawyer yesterday. She said she thinks we'll be able to work something out with them, it's just a matter of what it will be and when. There are two parts to this. All of this was caused by the original social worker who filled out our application last March and told us that our retirement accounts were exempt. As a result of her error, benefits were awarded to us when we technically did not qualify… therein the "Inadvertent Overpayment of Benefits". So, the first part of this is attempting to get DCF to admit they made a mistake. However, even having done that, they could say, "Sorry we screwed up, but due to our error, you still owe us…" - you get the idea. So, the second part of this is getting them to agree that we can't afford to pay them back (legally speaking we need to be able to prove we can't do it within a 3-year timeframe) so that they'll write all of it off and the whole thing will just go away. My lawyer said there's a good chance we'll have to request a hearing in order to get all of this rectified. I'm hoping to avoid the melodrama of that (any time you go to court there's always the chance you could lose, and I really don't want to lose this one). However, we'll cross the bridges as we get to them. At this point, I'm just REALLY happy that I found someone to represent me pro bono. If I didn't have a lawyer at all this would all be much worse.

Allie had her last day of school today before Spring Break. She's very excited that she has a vacation. She and Rachael have been missing each other lately, so I'm looking forward to watching them play together. My Mom is going to come in for a few days, too, so they'll get to see Granny. They're both really looking forward to that. I'm expecting they'll adore each other for a day or two and be fighting like cats and dogs by the end of next week.

Rachael turned four on 3/13. We had a party for her down at my brother's house. It turned out really nice - we were able to have both sides of the family represented. My Mom, aunt, uncle, and cousin were there, and some of Howard's family was able to come too - including Aunt Claire and Uncle Ed from Hartford, who were in town visiting. They are a couple of our favorite people, so we're always thrilled when we get to see them - and when they can spend time with our kids. I think a good time was had by all.

Rachael is now recovering from the "I'm 4" blues. She thought "4" was going to be this great and wonderful thing and that now that she was 4 she'd be "big" like her sister. The poor kid actually believed that she'd be taller and that life's rules would suddenly change for her. The other night she just cried and cried because 4 wasn't living up to all she'd hoped it would be. She announced that she thought she should just be 3 again! We had a long talk about how the numbers really don't matter, that it's all what you make of it, and that she really shouldn't put expectations on any number at all. She was already starting to project how at "5" it would all be different!

I mentioned to Howard (in front of Rachael) that she'd been busy the past couple of days checking all of her limits and determining where all of the lines were in the sand. She looked shocked and grinned. I asked her if she'd found out that she didn't have as much freedom as she'd hoped or if she'd discovered that Mom's a pushover. She didn't answer, but she actually blushed!!! I looked at her and said, "you didn't know that I knew you were doing that, did you?" her eyes got really big and she said, "No!" I assured her that Mom and Dad were pretty smart too, and that she really hadn't been getting away with anything. More than anything else, I think she was impressed that I figured it out. It was all too funny.

We have made it through visitor season. It was SO awesome to see everyone. And, quite frankly, by the end, it was nice to have the house back to ourselves. We had 4 guests in about 5 weeks. I'm social and love to visit, so for the most part, it was awesome. Jen (my cousin's daughter) is talking about coming back to see us again in June. I'm hoping she'll be able to do so. I miss her tons and don't get enough time with her.

Howard's cousins (Uncle Roland and Aunt Sue to our kids) are talking about coming up to visit some weekend in the foreseeable future and possibly taking us all to Disney. We got to see them briefly at Rachael's party, but didn't get to visit they way we would have liked. I'm hoping that we'll be able to work things out because they're people who make us smile. They're both just really interesting people and our girls totally adore them. Also, I couldn't be more thrilled that my kids are getting a sense of family. After 12 years out on our own in Ohio, I don't take that connection lightly.

My friend, Dana from Ohio (speaking of), is going to be in town with her family at the end of April and is going to come visit me for the day! She has a daughter about Rachael's age (who I've never met). To say I can't wait is an understatement. I haven't seen her since we moved almost 3 years ago.

This weekend Howard has a friend from school who will be joining us with her fiancé for Easter dinner. I believe it's really just an excuse for Howard to cook real meat. He's preparing dinner for her fiancé and himself. His friend is a vegetarian and the girls and I don't eat much beef, so I guess we're on our own! I'll throw a main course together for us and leave the rest up to him. It should be interesting. He doesn't get into the kitchen very often - I'm curious to see what he's capable of doing! My kids are wholly disappointed that they don't get to celebrate Easter and that the Easter Bunny isn't coming to see them. There's a lot of hype about Easter in school and I feel bad for Allie because I remember how it feels to be so left out of the norm. On the flip-side, as a Mom, I'm SO tired of candy holidays - Christmas, Valentine's, St. Patrick's Day, Easter, Halloween, Thanksgiving. It just seems like it rolls from one candy thing to the next. I'm actually kind of glad I don't have to deal with Easter.

I'm sure I've missed a ton of stuff, but if I want to get this entry posted instead of in the dead archives with the last two, I'm afraid I need to wrap it up. I'll try not to let so much time pass before the next. And, if I'm able, within the next week or so, I'll stick some pictures out here from Rachael's party.

Love,

Deb

Hi Everyone,

Just a quick update. I had a routine appointment today with my oncologist. He informed me of something brand-new that I'd not heard of yet -- a vaccine for colon cancer! I have almost no information on it at this time. However, he's going to be gathering as much as he can for me within the next couple of weeks. He said the vaccine is still in the study stages. However, some of the studies are up to Stage 3 already, which means it is definitely showing some promise. He thinks that preliminary results are showing that it will kill the cancer that's present, but will not keep it away on a permanent basis. In order to qualify for the study I would have to have a certain enzyme in my blood (here we go again). However, IF I had the enzyme and IF I qualified for the study it would mean that I could potentially be off chemo for a number of months. I have an appointment in two weeks to follow up with him.

Other stuff - since I screwed up my CT Scan schedule by making them do mid-cycle scans, we're just going to stay on that odd schedule. I'll have them in another 8 weeks which will be half-way through my next 12-week round. Friday is Week 12; the last of this cycle. I'm going to have 2 full weeks off of all chemo before we start again. It's not much, but hopefully it will give my body a bit of time to heal.

I went G.I. Jane this weekend and got my head shaved! It wasn't as traumatic as I feared it might be. My hair was just looking so ridiculous, with bald patches everywhere, that keeping it didn't seem to make much sense. Neither of the girls liked it at first, but they've both told me that they're starting to get used to it now. When we were in the car today Rachael asked me to put my hat on because she didn't want to look at my bald head! They're both uncomfortable with it, but given no alternatives, I think they've accepted it pretty well. One of the things that I think really helped them is reading a book that was put out by the American Cancer Society about a Mom with breast cancer who had to have surgery, then chemo (and radiation) who lost her hair. The Mom in the book goes through all of the things that I've gone through. It let them know that I wasn't the only Mom in the world going through this.

I'm still reading and getting up to speed on the ph balance diet. I'll be starting my alkaline supplements this week. When I saw my doctor today he was really interested in what I was doing and how it all worked and has asked me for more information on it. I'm impressed that he's so open-minded; it's a rare quality in a doctor of his caliber steeped in such a conventional environment.

Saturday we're going to Disney World!!! Howard's cousins, Roland and Sue, are taking us all for the day. They're driving up from Jupiter and meeting us there. I am so excited I can't even stand it. This is SO special on so many levels. First of all, it's something we would love to do with our kids but are no place even close to being able to afford. I don't know if they even realize the magnitude of what they've offered, but they're letting me be a part of my kids' first real Disney experience (we've done the free stuff with them but never the park). No matter what the future brings, I'll be with them for this and that can't ever be erased. I certainly hope to be able to bring them many more times in the future, but knowing I'll be able to share this day with them is priceless. Then, there's the fact that I just love Disney - I've always been a silly kid at heart. Top all that with the fact that his cousins are just terrific people whose company we enjoy immensely and who my kids love to death and we're going to be in for one heck of a day. I'm just overwhelmed by the generosity of this offer. I plan to take LOTS of pictures and to have lots of pictures taken of me with my kids, so I should be able to post some after the event. The kids have overheard bits and pieces of conversations, but haven't put any of it together, so they're going to be REALLY surprised when we get there.

Weekend following we're in Palm Beach for Passover. My Mom's finally got the inside of her house together enough that she can have company again. Her pool may/may not get fixed this year and she's not even going to attempt to fix the enclosure until after hurricane season ends this year.

I think that's the big stuff for now. I'll try to keep everyone updated as more develops.

Attached are some pictures from Rachael's birthday party last month and a great one of her I was able to get at a neighbor's birthday party this weekend (the tree shot). Rachael had one foot (that you can't see) on the roof of a toy car; however she climbed the tree and positioned herself in it on her own. She was up in the tree for a good 10-15 minutes before I had the presence of mind to grab my camera! Hope you all enjoy.

Love,

Deb

Hi Everyone,

I really need to start updating this site more often. For someone who doesn't lead a very exciting life, a lot sure happens in one month. It's probably true for everyone - you just don't realize it until you start documenting it all!

Since my last posting I've been off of chemo, gotten more info on case studies and am in the process of attempting to qualify, gone to Disney, started the ph diet, got a new wig, and am having some minor (I hope) problems that are complicating my exercise program. That's it in a nutshell! The expanded version follows.

My doctor found out about three different colon cancer vaccine case studies: one at Georgetown University, one at the University of Virginia, and one at the National Cancer Institute (Bethesda, MD). He gave me contact info and asked me to follow-up with Georgetown and UVA; he got info on the study at NCI. Step 1 for all three studies is that I had to test positive for a specific enzyme in my blood. Florida Hospital ran the test and I am officially HLA-A2 positive! I have no idea what that means, but it's a very good thing; unless you are HLA-A1 or HLA-A2 positive you can't get into any of these studies. I also found out that although my doctor has tested a number of his patients for this enzyme, I'm the first to have it. Go, me!

The study at Georgetown didn't seem feasible for me to participate in. If I were accepted I would have to go to Georgetown for treatment once a week for 12 weeks. Then, if it were successful, I would have to go once a week for at least another 12 weeks. Also, because Georgetown is a private university and doesn't have much federal funding, none of the doctor's visits (and a number of the other expenses) would be covered by the study. Medicaid would not cover them because they are out-of-state expenses and are considered experimental.

The University of Virginia study is still a possibility. It is a Phase I study that is looking at the safety and side-effect issues of the vaccine. If I were accepted into the study I would need to go for treatment once a week for 4 weeks, then at the 3-month, 6-month, 1-year, and 2-year marks. This study is not my #1 choice because it focuses on the safety and side-effect issues of the vaccine and is not at all concerned with the effectiveness of the treatment. The case study contact was out of the office last week but will be back in this week, so hopefully I'll be able to find out where I stand re: eligibility. My doctor's office was awaiting information re: where my pathology slides needed to be sent last I checked.

National Cancer Institute has the case study I want to be in. I believe it is a Phase 3 study, but couldn't find a confirmation of that on the consent form and haven't actually asked about it yet. I would need to go to NCI for an initial vaccine and then return every-other week so that I could get 3 boosters. After that initial 8-week period I would have scans and if it appeared that the vaccine was working I would return once a month for 12 months. At that point, at least in theory, I could be "cured" (if not, I'm back to where I left off - weekly chemo indefinitely). All of my medical costs, plus one round-trip airfare would be covered by the study. NCI also has hospitality suite arrangements (though I don't yet know details); usually this means rooms available for as little as $10 per night at special facilities. The only real catch to the NCI study is that after the initial vaccine I wouldn't be able to be near Rachael (children under the age of 5) for two whole weeks. We're not quite sure how we'd work this, but we'd find a way! There are three tests I need to pass in order to be eligible for this study. The first I passed by being HLA-A2 positive. The second has to do with a positive CEA tissue-stain (I'll get these results on Monday). The third also has to do with a pathology test, but I don't remember what it is that they're looking for. I've been told that 90% of colon cancer patients test positive on these last two tests, so I'm keeping my fingers crossed. A negative on either of them will disqualify me from the study.

There is no timetable set for any of these things. I had to be off chemo for 30 days to qualify for any of them and they would not consider me if I was still on chemo when they received the application. I've been off now for 5 weeks, which makes me kind of nervous. However, it's a risk I have to take if I want to get into a case study. So, if when they say I'm in, it happens VERY quickly.

One of the things that I've looked into is the logistics of getting to the DC area in order to participate. It looks like there are a number of charities out there who specialize in helping with this type of travel. I won't be able to nail anything down until I have specific dates and appointments, but I'm pretty sure I'll be able to find a way to get there when I need to.

On April 16 Howard's cousins, Roland & Sue, took us all to Disney. It was such an amazing day, I can't even begin to fill you in on everything we did. If I didn't e-mail you the link to our Disney pictures and you want to see them, drop me an e-mail and I'll send you an invite (they're in an album on ofoto.com). We all had a ball. Rachael couldn't wait to go to the Haunted Mansion. Her favorite thing ended up being Cinderella's castle. Here's my favorite story from the day: Uncle Roland asked Rachael what her favorite thing had been so far that day. Rachael replied, "Cinderella's castle… but I'm kind of sad that we didn't get to go inside." The next thing we know, Roland had made reservations for all of us to have dinner at the restaurant up inside of the castle. We met Belle (from Beauty and the Beast) in the lobby of the castle and the girls got to speak with her for a while. While we were having dinner, the kids kept looking for Cinderella, who never showed. After dinner, the girls saw Belle again in the lobby. She asked how dinner had been. Allie said, "Great." Rachael said, "The food was excellent, but Cinderella wasn't there. You'd think since she invited us, she would have shown up. That's just bad manners." Belle did an excellent job of not falling over with laughter. She just smiled and said, "It wasn't her fault; she was really busy. She had to make an appearance over in Toon Town. She's still there now." Then she looked at Allie and said, "Could you PLEASE do me big favor? Would you please find Cinderella and give her a message for me? Tell her that Belle said, 'Tag, she's it.' We love to play games." Thus started our great quest for Cinderella. Allie came running out of the castle, straight up to Howard calling, "Daddy, Daddy, Belle gave me an IMPORTANT message for Cinderella. I HAVE to find her and go deliver it!" Over to Toon Town we went. We had to wait 45 minutes in this long, boring line to get in to see The Princesses - Sleeping Beauty, Snow White, and Cinderella. However, we finally did get in and the kids got their pictures taken with each. Allie got to deliver Belle's message to Cinderella who had obviously had enough of being Cinderella for the day and was really quite a snot! She said, "Oh" and gave this stupid fake laugh. She didn't even bend down to get her pictures taken with the kids. However, the girls were much to caught-up in the moment to even notice, so it was fine. Allie says that giving the message to Cinderella was the highlight of her day. By the time we got out of there it was after 9:00 and most of Toon Town was vacant. We did a quick jaunt through Mickey's House and saw a sign that said, "Meet Mickey." I thought it was too late, but we were ushered straight through - not a soul in front of us. Mickey's performance made up for Cinderella's and then some - he was terrific. Rachael was at her absolute cutest that I've ever seen her. She went running up to him, gave him a big hug, and started gushing, "Thank you so much for letting us see your house. That was so sweet of you to let us through. Disney is awesome. It has just been a magical day" (no, I'm not kidding, she really said that). "You are the sweetest Mickey ever" and she kissed him on the nose. We got some great pictures with Mickey, did some of the rides that were crowded earlier, and stayed for the fireworks. The kids loved the fireworks. Rachael came up to me when they started and thanked me for letting them stay. All-in-all I have to say it was one of the best days I've ever had. And, we get to repeat it… as if taking us all to Disney for the day wasn't generous enough, Roland and Sue gave us 3-day passes, so we get to go back 2 more times. We've never gotten to see the Wild Animal park, so we're planning on doing that some time and we'll get back to Disney when Howard's Mom is in.

The ph diet is progressing. Trying to figure it out was next to impossible. The kit that I got contained two different books with totally contradictory information. So, sorting through everything was complicated, at best. However, I finally started the supplements and my ph is higher than it was. This is going to require some experimentation and a lot of tracking in order to figure out what works best.

The weekend after Disney we went down to my brother's house for Passover. My brother had a houseful and it was really a lot of fun. There were even some other kids there, so my kids weren't quite so isolated. It was nice to be in a group for the holiday. Also, I feel like when we can celebrate like that it gives my kids more of a sense of their jewish ethnicity.

When I got back from West Palm there was a message on my answering machine from the cosmetologist at the American Cancer Society who had styled my original wig for me. She said that she had spoken with someone at ACS and that they had made special arrangements for me to go out and buy a new wig (for up $100) that suited me. She took time out of her own schedule and met me that Wednesday and we went wig-shopping up in Daytona; we found this incredible store that had hundreds of wigs. I found a cute little red one that has a crop style (similar to what I'd had naturally when I had hair). The woman from ACS who had to pay for it happened to be in the area and said she'd come right over so that I could get it right away. While we were waiting for her to show up, one of the customers who was in the store who we'd been speaking with went up to the ACS person who I was with and offered to buy the wig for me. He was a cancer survivor and a hairdresser - and obviously a very generous person if he was willing to do this for a complete stranger. I also found out that the "arrangement" ACS had made is that a private donor had offered to do this for me; it wasn't part of their regular program. All I had to do once I got the wig was get the bangs trimmed and I was set to go!

One of the things that's changed me throughout this ordeal is the incredible generosity of others. It's been amazing. I know Howard and I will be much more generous people on the other side of all of this.

Also in this last month we finally got to observe Rachael's music class! She'd been going every Monday for the last few months and had kept so much of it a secret, we really didn't know what they did in there - all we knew is that she was singing a lot more and was always very happy when she came out! Anyway, we got to observe the class playing instruments, singing, and more. It was easy to see why she was so enthralled with the program. It will start up again next Fall.

Tuesday I'm scheduled for a PetScan. I've had a lot of pain in my left hip and lower back. Here's what I think really happened: I had an ingrown toenail that was really painful. As a result of that I was limping a bit for several days. I think that threw-out my hip, which has been a weak point on my body for years. Since I'm still walking and functioning, my hip hasn't really had a chance to heal, resulting in really bad pain. However, I can't help panicking, just a bit, because the pain FEELS almost the same as the pain I had when all of this began. Then I was sure that I'd thrown-out my back at the company bowling party! So, the lesson I've learned is that I'm not a doctor and that I shouldn't assume… that if I feel pain I need to get it checked out just to make sure nothing is really wrong. My doctor was funny when I told him about this and about how it all started. He said that if I took all of the best doctors in the country and put them in a room and described my symptoms at the time, the only one who would have said, "colon cancer" would have been the wise-guy in the corner and even he wouldn't have really believed it! Basically, I've not followed the "norm" for anything throughout this whole ordeal, so he doesn't make any assumptions about things at any time. As such, he's sending me for the PetScan just to make sure everything's OK. If it shows that the cancer's still relatively under control (we know that there's probably still some in the lymph nodes) and that there's not anything in the hip area causing the pain, then we'll need to figure out what's going on orthopedically and address it then. I'm still trying to exercise daily, but have not been able to do my regular walks. I've been walking in limited amounts and have added a lot more upper-body exercises in an attempt to keep my lymph moving while keeping my hips in place!

Allie gets out of school for the summer this week - only 3 days left. She's excited and sad at the same time. She's looking forward to being home with me over the summer, but really sad that she won't see her teachers on a daily basis. She was very blessed to have great teachers this year and she certainly learned a lot. I hope she's as lucky next year.

I think that's most everything for now! Howard's still plugging away at school. The further into the program he goes, the more intense and time-consuming it is. It's the exception now when he doesn't have to go in over the weekend. However, he's hit some course material that he's really enjoying (3d character modeling - no surprise for those of you who've seen his figure sketches). I'm really proud of him for working as hard as he is. He still has a long way to go (he'll graduate in Sept. but won't really be done until Oct. because there's an optional course offered several weeks following that he's planning on taking). After that, hopefully he'll find gainful employment!

The pictures I'm including this time are the best family photo we've ever had taken (the one with Pluto), a picture of Rachael kissing Mickey on the nose (after she told him he was the sweetest), a picture of Allie & I together (where I'm wearing my new wig), and a picture of Rachael at her last music class.

I'll drop a note on the site once I get my PetScan results back at the end of the week. My brother will probably get it posted early the following week (the week of the 30th).

Love,

Deb

Hi Everyone,

Just a quick update on the PetScan from Tuesday… received a call from my doctor's office today and got great news. There is no visible evidence of cancer! That's really amazing given the fact that I've been totally off of chemo for 6 weeks. I was hoping to find that the cancer was still under control, but NEVER expected a report like this. The only thing I can think is that the ph diet, in combination with everything else I'm doing, seems to be making a difference. Plus, thank you all for your prayers. By now you know I believe they've made a difference for me.

I still haven't seen the pathology report, so I don't know any of the specifics. I'll find out next week.

What this means in real terms is that I don't have to worry about how long it's taking for the case study testing to be worked out. I'll be fine until I get an answer. Either way, the case study has actually helped me. If I get in, I have a chance at a real cure. If I don't get in, I'll have had a several month break from chemo that under normal circumstances I never would have had. Any time my body has to heal in between chemo cycles is a good thing!

Should know something on whether or not I'm in the NCI case study some time the week of 6/6. I'll post again as soon as I hear from them.

Love,

Deb

Hi Everyone,

Just a quick update… I'm in the case study! I need to be in Bethesda, MD on Sunday, July 17th. I'll actually get my initial vaccine on Tuesday, July 19th and will be able to return home that evening. I'll need to return every other week for 8 weeks (a total of 4 visits). I'll then have new scans. If the vaccine is working I'll need to return once a month for the next year.

We've informed the kids that I won't be able to be near Rachael for the first 2 weeks following my initial vaccine. All things considered, she took it really well.

I'm still working out all of the logistics of how we're going to do this. However, I'm sure we'll find a way!

Still not sure what's up with my hip pain. Got x-rays today and hope to know something on it by the end of the week.

Thank you all for your prayers. If this vaccine works for me, I'll have my miracle.

Love,

Deb

Hi Everyone,

Sorry it's been so long since I posted anything. I'm doing pretty well now. However, I was pretty sick for a while there - which is why there were no updates the whole time I was being treated in DC.

Unfortunately, the experimental vaccine did not work at all. I was off of conventional chemo for six months, which gave the cancer quite a bit of time to take route and spread. At last CT Scan, it was in my lymph nodes (which I had known) as well as several new spots in my abdominal cavity. There was one lymph node in particular, at the base of my spine, that was enlarged due to the cancer. It put pressure on my spinal cord which caused LOTS of pain as well as spasms down my leg. The only thing NIH was able to do for me was give me morphine and an anti-seizure medication. That was pretty much my summer - one big medicated blur. Thank you to my Mom, Howard's Mom, and aunt, all of whom came to help us out. Thank you also to my neighbor, Lisa, my great friend, Jan, and my Aunt Leah who accompanied me to DC and helped me out there. I was told not to think of the experiment as a waste of time because the doctors believe that although the vaccine did not stop the cancer, it should make conventional chemotherapy 1-3 times more effective. Here's hoping.

The one good thing about DC was that it enabled me to rekindle a friendship with a long-lost friend from Ohio. I got to spend time with her and even meet her daughter. That part was very cool.

When I got home from DC I got back onto conventional chemotherapy - Irenotekan and 5-FU (bye-bye pretty, dark curly hair). The initial dosages were too high for my body and resulted in horrible nausea (and possibly an ulcer). It took a few weeks for me to recover and start eating again. Second treatment the Irenotekan dose seemed OK, but the 5-FU still was too harsh for me - they pulled me off of it and we're waiting for the next cycle. Right after Thanksgiving I'll go for my 3rd treatment - we're going to give the Xeloda (the 5-FU pills) one more shot at a further reduced dose. If that doesn't work, we're going to have to try using a pump for administration. I'll go into the doctors' office, they'll attach me to a pump through my port - I'll keep it on for 2 days, then have to go back and have it removed.

I'm mostly off of the morphine. Although I'm coming off slowly, withdrawal is horrible. I knew when I started on it I'd have to face this again - and I am! However, it's NOT fun. The good news is that my pain is gone enough that I'm able to get off (which means the chemo has shrunk the cancer in the back lymph node). Also, I'm almost there! I'll be totally off by the end of the year.

As for how I'm feeling? Well, I'm finally starting to do little things for my family again. I'm still tired and don't have much of an appetite, but I'm getting there. I started driving about 2 weeks ago, which has helped a lot. I even took Allie to school this morning for the first time since I've recovered.

Unfortunately, my illness set back Howard's job search a bit - all he had time to do was take care the kids and me for over a month. He graduated the last week in September. I was so sick I couldn't even go to the graduation (I'm still upset about it). He's working hard now on getting his "reel" together (technically, it's a DVD). He has his first interview on Friday with a company from California that's out here recruiting. Odds for that position aren't great. Entry-level salaries in the CA area generally would not be high enough to warrant a re-location. However, one never knows! And, it's a start. He's also working on putting together a reel that would allow him to apply for positions in the gaming industry. Personally, I think that's a bit more promising and there may even be some local jobs in that line of work. The catch to all of this is TIME. It takes time to put all of the stuff together and it takes time to take care of the kids and me. However, as I am less needy he's definitely getting LOTS more done! In fact, as I write this, he's at school working on his reel now.

We're heading down to my brother's house for Thanksgiving and looking forward to spending time with him and my Mom.

Thank you all for your patience and e-mails! I'll try to start updating regularly now that I can sit in front of the computer again!

Happy Thanksgiving!

Love,

Deb

Happy New Year!

As usual, it's been too long since my last posting. I've started a couple of entries that never got finished… however, the truth is I just haven't sat down to make it happen.

We had a wonderful Thanksgiving at my brother's house. December sped by for us, as I'm sure it did for most everyone. Howard's still hard at work on his demo reel. December finally offered him some time to get things done, so he is making progress!

Allie has 2-1/2 weeks off of school for Christmas vacation. We decided to take advantage of the break and the girls and I have been having a lovely time at my Mom's house.

I started on a new chemo regime about 2 weeks ago. I go for the same drug I've been on (Irenotekan) which is administered via IV, then they attach a pump for the 5-FU. The pump stays on for 46 hours, then I go back to the doctor's office and get it removed. I then repeat the procedure every 2 weeks. Basically, it means I have 3 days on chemo, 11 days off. The first week I get chemo I'm exhausted. Luckily, this cycle Mom was able to take care of the kids for me and I just slept. Most cycles I'll have to muddle through a bit more. However, by the second week I'm feeling pretty good.

We came down to Mom's house the day I got the chemo pump removed. Howard came down to spend Christmas and the first couple of nights of Chanukah with us. Howard's Mom sent a ton of presents for the girls. They got up Christmas morning and got to open all of the presents, then Sun. night my Mom had a Chanukah party and they got to open a ton more. They definitely have LOTS of new stuff! Howard left Tues. morning and was able to capitalize on the quiet house, without parental responsibilities, this week. He'll be coming down today to spend New Year's with me and to pick us up. We head back home on Monday.

Since we've been at my Mom's we've had the pleasure of visiting with lots of extended family and friends. We got to see my side of the family on Chanukah. Uncle Andy (my brother) came the next day and spent the day with the girls. My Mom got tickets (thank you, Andy) for the four of us (the girls, Mom, and I) to see The Nutcracker at the Kravis Center where my brother works. We got to go to an indoor flea market with my Aunt and Uncle. We went to Aunt Sue and Uncle Roland's house for dinner (Howard's relatives) and even got to see Aunt Lulu (Memere's sister) and Cousin Joann from Georgia. Yesterday a good friend of mine from college took me out to lunch - I hadn't seen him in almost three years. It's just been great visiting with everyone.

Thank you so much to everyone who sent presents for the girls (and for us). Your thoughtfulness and generosity is heartwarming and is truly appreciated. Also, it was great getting Christmas cards from all the friends we care about but speak with so rarely. Thank you for keeping us on your list even though I'm so horrible about ever sending anything out on this end.

This was a rough holiday season for all of us. When Howard and I got engaged we agreed we'd spend every Thanksgiving with my family and every Christmas with his, even once we had kids. Well, since we've had the kids, Christmas with Mimi and Uncle Ken (and extended family) has become a truly special tradition. Last year Howard's Mom flew us in and we all had a fabulous time. This year she spent all her money coming to Florida and helping us out - when I went to DC for treatment and afterwards when I was too sick to take care of my own family and Howard was busy with school. At any rate, not being in CT for Christmas was a huge disappointment for all of us. On top of that, we really had no money to buy anything for anyone and we didn't have time to even send out Christmas cards (Howard was busy with his reel and I've not been well enough to do much of anything in the evening). Christmas is often a down time for Howard, but it's not something I've ever experienced before. In spite of the huge distance between FL and CT, we were able to minimize the gap - we put Howard's Mom on speakerphone while the girls opened their presents. It helped, but it still wasn't the same.

Howard and I were in the car discussing all of this - in particular how generous and thoughtful everyone else had been and what scrooges we felt like this year - when Allie chimed in, "Christmas isn't about presents." I asked her, "What is it about?" "Family," she said. Rachael finished the sentence with, "…and food." I think they each have it right in their own way!

When we were at Sue and Roland's house (Howard's relatives) I was mentioning that I had written to Disney World to see if we could get our tickets extended (they were the people who had given them to us) but that I hadn't heard anything back at all and was surprised and disappointed that Disney had blown us off. Well, wouldn't you know, not two days later, we got a phone call from a gentleman at the Disney Executive offices stating that he did receive my letter and that they would be happy to re-issue the tickets for us. The original passes were valid for six months and I was just too sick this summer to do anything fun, so they had expired before we could use them. He informed me the new tickets will have an expiration date of 2030, so we can use them whenever we like! I'm looking forward to being able to take the kids again. The day we spent there in April was truly one of the best and most memorable days we've ever had together as a family.

Both girls are doing great. Allie's doing very well in school. Her favorite subject is P.E. (Physical Education). However, I'm most proud of the fact she's excelling in reading. Her skills really took off this year and she can now read most anything she wants to read. According to her teachers, she's doing well in all areas. She's only in first grade - still too soon to see where her strengths really lie. On the extracurricular front, she's asked for and we're planning to enroll her in Kung Fu. She enjoys things that are physical and I think it will suit her well. Howard and I both feel it's important that the girls have some type of martial arts training while they're in grade school so that they know how to defend themselves in a basic way. We'll send Rachael at some later time - we want this to be Allie's thing without any type of competition with her sister.

Rachael finished up her music class in December. From the outside she seemed to really enjoy it, but she said it wasn't as much fun as the first class she took. We're going to skip this quarter and see if she misses it. However, she's still very involved with gymnastics. She's also anxious to get into T-ball. I don't think we'll be able to get her into that until Spring.

Rachael is starting Pre-K at a Montessori next week. I was able to get her enrolled in the state's Pre-K program - so they pick up the tab 100% (can't beat that). She'll go M-F from 8:30 - 12:00. She's been getting bored at home, so I was thrilled that this came through. The place where I've enrolled her was the only one on the state-approved list that was near my house, seemed to offer a quality environment, and didn't teach religion as part of the curriculum. I had received a letter from the state that said it wasn't too late to enroll my child in the program, so I called this one preschool (their waiting list last fall had more than a dozen kids on it). It turns out I called just two hours after one of their regulars had given notice that they would be moving unexpectedly at the end of this year! Rachael and I scooted over and checked the place out - we both liked it. She's really excited about going and is looking forward to learning new things. I'm excited she's bought into the idea because up until she saw the preschool she was dead-set against going anywhere until "she was Allie's age" and I "made her" go to Kindergarten!

I think that's about it for the family update. Holly is almost 14 now and is still hanging in there. She sleeps a lot and has become a very expensive pet with all of her old-lady medicines that I have to give her each day. However, she's still awesome with the girls and they love her to pieces. Howard's just over the whole dog-responsibility thing, so it will be quite a while once Holly goes before we get another. I think it would be hard for me to get a different dog any time soon, not just because of the responsibilities, but because Holly's so special it will be a while before I could "replace" her in any way. She's truly one-of-a-kind and has been my baby since before I had my own babies!

This evening will be a quiet one. We're going to stay home with my Mom. Her friends, Harvey and Saundy (who are like an uncle & aunt to me) are coming over and it will just be the 5 of us. We'll bring in Chinese and have a mellow evening. I'm just hoping to make it up past midnight!

I'm looking forward to putting 2005 behind us and to starting a new year. There's lots to look forward to in 2006. I'm hopeful this will be the year I get rid of the cancer and find a way to keep it away. I'm also hopeful that Howard will find quality employment so we can start to get back on our feet financially. Rachael will start school full-time next August (kindergarten), so that will change our schedule a bit as well. Not to sound ungrateful for all we have (because I'm aware that we are SO blessed), I'm crossing my fingers that this will be the year that things start to turn for us in a really positive way.

I hope you all had a wonderful holiday season with your families and that you have a safe, healthy, happy New Year full of wonderful things.

Love,

Deb

Hi Everyone,

I've decided to stop apologizing for the time between my posts. Although I will attempt to post more often, I've come to the conclusion that I'll get to it whenever I'm able and I'm not going to feel guilty. It's part of the process I'm currently in of accepting me as I am instead of trying to please everyone else (can you tell I've been doing too much reading?)!

Actually, before I forget, I'm going to give everyone a website I'd like for you to checkout when you can: www.cancerrecovery.org. Cancer Recovery is a non-profit organization that was founded by Greg Anderson, the author of the book I credit with saving my life: 50 Essential Things to Do When the Doctor Says It's Cancer. It took a while for me to find his website because he changed the name of his group since he originally wrote the book more than 10 years ago. On this site he has all sorts of resources, including copies of his newer book that he'll send to anyone for free. The organization does accept donations; however, virtually all of their resources are available to anyone who needs them, regardless of ability to pay. I'm still reading my way through all of the stuff that they sent me and I'm signed up to start in their next tele-support group. All I can say is, if you know anyone who has cancer, please refer them to this site. I can tell you personally that when I read the stuff this guy has written, my spirit soars, I'm filled with hope, and I feel like I'm more focused on the "how to's" of survival.

OK, now for the news everyone checks-in here for… how am I doing? Well, I think! I had a PetScan and CTScan in January. The latest results show that there are still four tumors present within my lymph nodes, but they are definitely shrinking. I have two in my chest/lung region and two near my stomach (including the one that was pushing on my spinal cord last fall when I was in so much pain). The way a PetScan works is that it measures the uptake of sugar by the cells within the body - cancer cells metabolize sugar four times faster than healthy, normal cells. The metabolic rate is given a number, which helps the doctors identify when cancer is present. A 4.0 or higher means that cancer is definitely present. Below 4.0 it could be cancer; it might not be cancer. My largest node (near my lung) had an uptake rate of 4.1, the larger one near my stomach was 3.9; the other two were 2.7 and 1.9. They do know that all of these spots are cancer (regardless of the numbers) because they are in the exact spots where cancer was present in previous scans. All of the spots are significantly smaller than they were in September (when I was SO sick) and the spots near my stomach are actually smaller than they were in June before I started at NIH.

My main side-effect issue now is that the chemo is killing my red and white blood cells. I'm currently slightly below normal, but they've been dropping at a pretty alarming rate. If you guys would please start praying for me, that my white cells could come up within normal range without additional drugs, I would sure appreciate it! I'm doing what I can naturally to help raise my cell count, but so far have not been successful. I have one more supplement that I'm going to be adding soon (asparagus tea - yuck), which I took when I first got sick, but stopped because it tasted awful and I didn't seem to need it at the time. As Howard recalls, it worked really well for me back then. I'm hoping it will again. I believe that between the tea and the prayers I can get my counts up again. If not, I'll have to start taking Neulasta (you've probably seen it advertised on TV); it stimulates the bone marrow to produce more white cells). The down-side is that it causes bone pain (ouch) and they have absolutely no idea what the long-term effects of the drug might be.

Overall, as I said, I think I'm doing great. I'm starting to feel like me again. Also, I'm afraid to jinx myself, but I really feel like the worst of all of this is behind us. I think it will still be a couple of years before I can have any type of "normal" cancer-behind me existence, but I'm oddly OK with that. I believe I'm dealing with the chemo side-effects well. My big complaints, physically speaking, are that I have some pain in my port (and the muscles around it) for several days during and after the 46-hour 5-FU administration; along with the usual nausea, fatigue and diarrhea that comes with almost any chemo. I think the fatigue's been a bit worse since my cell count has dropped; but that only makes sense. Mentally, I feel like I'm totally back on track. I feel great about the changes I've already made within my lifestyle and have (on most days) come to terms that it's OK I haven't been able to do EVERYTHING I'd like to do.

My successes: we're eating SO much better than we used to eat. Not just me, but the whole family. Within the house, I've switched over so that 95% of the grains we have are whole grains and I won't buy anything with bleached flour. About 70% of the produce I buy is organic. I can't afford to make that 100%. And, quite frankly, there are some things (like bananas) that just are not quality in their organic counterparts. If we lived near a banana plantation I'm sure I would say otherwise. However, as is, the organic bananas I've bought are either bruised and mushy or, if bought green, dry out before they ripen. The other seamless switch I've made, that no one within the family seems to have noticed, is that we've gone from all-purpose flour to brown rice flour. It measures, cooks, and tastes just as good as it's less-healthy cousin. I've switched to turbinado sugar in place of white-refined for most things that actually require sugar; though I don't use much of either. In cooking/baking, the family can't tell the difference. I won't say the switch from brown sugar to turbinado or honey for morning oatmeal has been seamless, but it has happened. The other switch, which my husband has groaned about ad nauseum, though the kids haven't seemed to care, is to real 100% maple syrup instead of the high fructose corn syrup and chemical-based "pancake syrup." Personally, I have to admit - I think the fake stuff tastes better, too!

I'm still struggling to incorporate exercise into my life on a daily basis, but I'm doing alright. My mother-in-law bought me the greatest present ever - it's a chi machine. It's something Howard and I had been researching and wanting to try forever, but hadn't been able to afford. You stick your ankles on top of this thing and it moves your lower body in almost a figure-8 motion for a period of time (like 15 or 20 minutes). It oxygenates your blood and moves your lymph (the key for me). Obviously, it's not the same as a brisk 30-minute walk. However, on days I don't get to exercise, it moves my lymph so that I don't have to feel guilty. I feel the difference when I've used it, so I can tell it's really working - too cool. My mother-in-law loved my machine so much she even bought one for herself. E-mail me if you want information on this thing.

Many of the changes we've made were inspired by reading all I have about getting rid of cancer. However, the other big inspiration I had is from a program that we were selected for called The Superfit Family Challenge. Some local doctors wrote a book called, Super Sized Kids: How to Rescue Your Child from the Obesity Threat. I heard about it on one of the local radio stations. It referred you to a website (www.supersizedkids.com) where they had a "contest" to recruit people to work their program. You applied, and, if selected, received the book and all materials (including a 2-month membership to the YMCA) totally free. Well, much to my husband's chagrin, we were selected! I later found out that approximately 400 families applied and 200 were chosen. This program has made a definite difference in the kids' behaviors. They are much more active now and watch a whole lot less TV. We're active as a family more often, though we're having to work hard to increase that. The free gym membership inspired me to apply in the first place, then after we were selected I found out none of the YMCA's in my area will honor the membership - we'd have to drive 25 minutes to the closest one that's participating (so much for that). The program has also affected our diet somewhat in that we attempt to have a vegetable first-course before we eat dinner. It results in us eating more veggies and less carbs/fat. Since starting the program just over a month ago, Howard and I have both dropped a few pounds. He eats way less fast food and junk food. The kids are much more aware of the food choices that they make. Most of Allie's bad choices were from the lunches at school; she now takes her lunch a lot more often and is responsible for helping to choose what goes in it. The program also teaches you how to teach your children to read food labels, what they mean, and how to make healthy choices. This has made a big difference when I go to the grocery store with Allie - when she asks for something (like a "Lunchable" or cookies) I hand her the box, ask her to read the ingredients/nutritional label, and ask for her opinion. Most of the time if it's not healthy, she'll admit it and understand why I say "no". And, on rare occasion, we'll decide to buy something that's not healthy (like ice cream), which is OK in moderation, but at least they're aware of what they're eating. When Rachael comes home from school she frequently announces whether or not she's had a "sugary" food that day.

My funniest story about how the kids have assimilated this information is from Rachael. She learned about the seasons at PreK. On the way home, she was telling Howard… "It got cold and then there was Christmas and we got presents and candy. Then it was still cold and it was Valentine's Day and we got more candy. Next it will be my birthday (3/13). Then it gets warm and Allie and me are out of school… that's summer and Allie's birthday (August) is in the summer. After that it's hurricane season and we turn out all the lights and eat crappy food! Dad, why do we eat crappy food in the dark when there's a hurricane? I love Fruit Loops. Why can't we get Fruit Loops not during a hurricane? Is it because there's too much sugar?" (I had bought a multi-pack of the small boxes of cereal as part of our "hurricane" supplies and the kids got to dig into them during the storm!)

Ah… and my Rachael update. I mentioned she was starting PreK in January. Well, she took to it like a duck to water. She was originally enrolled for mornings - 3 hours per day. However, when I registered her through the state I was told that she'd be eligible for 6 hours per day because I didn't start her until January, so she had "extra hours" that she could "make-up." Initially, I felt the 3 hours was just fine; 6 hours sounded like much too long of a day for a 4-year-old. Well, Rachael was NOT happy having to leave school before all of her friends. There are 28 kids in the PreK program; 24 of them are full-time, meaning they stay all day. The school follows a Montessori curriculum and has academic instruction in the afternoon, as well as the morning. Finally, after Rachael begged and begged, I spoke to the director who said getting her in 6 hours per day was no problem at all. Rachael started full-time 2 weeks ago. She couldn't be happier. She's exhausted at night, but very content. And, she's started reading!!! That happened about 2 weeks after she started school. I kept telling her she couldn't read until she learned all of her letters and what they "say." Apparently, I was wrong. She appears to be more of a sight-reader than a phonetic reader. She has one or two little reader books that she can read totally on her own (a combination of word recognition and memory). However, she's starting to be able to sound out words, even if she's never seen them before. She's also started to do some really basic arithmetic (addition up to 10 and subtraction 5 and under). I'm just praying she has a great teacher next year so that she keeps learning and doesn't get bored and tune-out. I have a feeling it's going to be a challenge to keep her challenged.

My other fun Rachael story happened a couple of weeks ago. On the way home from her dentist appointment, I randomly decided to stop at the marina so that we could swing together. It was a gorgeous day and they have these great bench swings there that overlook the water. After about 5 seconds Rachael announced, "this is not much fun; these swings don't go high enough… what would be much fun is if we went home and you let me swing out back on my own swing so I can go high." Just as I was about to write the excursion off, I noticed this really cool wooden ship with giant sails. There was a tent nearby, so I could tell there was something going on. I warned Rachael that I didn't have any money on me, so that if it was something that cost money, we wouldn't be able to do it, but at the very least we could go see what was going on and look at the ship up closer. Turns out, the Nina was in town! OK, it wasn't the real Nina that Christopher Columbus sailed on, but it was a genuine replica, made as closely as possible to the original specifications and it was VERY cool. It did cost money to board, but the information was free. As I was telling Rachael about the ship and why it was there both the guy who worked there and someone behind us kept asking Rachael if she wanted to go onto the ship. I was getting rather perturbed and kept repeating, "I'm sure she would love to, but Mommy doesn't have any money today, so it's not going to happen." The guy behind me, a total stranger, pulled out his wallet, handed me the boarding fare ($4) and told me to take my daughter onto the ship. I think the fare was actually supposed to be $5, but the guy who worked there didn't care; I actually think he was considering letting us go for free (he was the one who'd been speaking with Rachael). So, after many thank-you's we boarded the Nina and checked it all out. Rachael was most impressed with the hole in the back of the ship where the steering mechanism sits - she was able to watch the ducks through it! As she was watching them I noticed a man with a large video camera taking her picture. I asked him who was he and why was he was shooting my daughter. He told me his name, showed me a credential, and said that he was from Channel 2 news. He said if they used the footage she'd be on the 5:00 edition. We had a great time - the guide even let Rachael sit in the boat they used to go from the main ship to shore, let her hold an oar, and sang, "Row, Row, Row Your Boat" with her! And, sure enough, the news used three different shots of her in about a 30 second story. I was actually on TV, too, for the first time ever. It was more like my one second of fame than 15 seconds, but it was still pretty cool. And I even remembered to tape it so that I could show Daddy and the grandmas at a later date.

Both of my normally-healthy kids got sick last month. Rachael had an ear infection and had to take antibiotics for the first time ever. Allie came home from my Mom's house over Christmas break with pneumonia. The amazing thing is, other than sniffles and a bit of a cough from a cold, I managed to avoid catching anything major. Both seem back to themselves now and I'm hoping to avoid further illness for a while. Actually, as I write this, Allie is home sick with a stomach flu - but it seems to be of the 24-hour variety and she already is seeming better. So, I'm projecting a bit when I say we're all healthy and back to our normal selves!

Allie's still having some problems dealing with my illness. She freaks out if she even hears us mention the word "cancer." I'm afraid she inherited my childhood insecurities and penchant for anxiety. I've been trying to get her in to speak with a counselor, but due to her insurance, there's been quite a delay. She finally has an appointment coming up mid-March. In her words, even though everything seems to be going great now, she's afraid that the rollercoaster we're on will eventually hit the top of the hill and fall. I credit her for having the vocabulary to be able to verbalize how she's feeling. I just wish something her Dad or I could offer in the way of advice could help defray the anxiety she's feeling. Unfortunately, nothing we've said or done has helped.

On a more positive note, since I've been feeling better, we've been playing together a lot more. We play ball outside at least once or twice a week (thank you Superfit Family Challenge) and we're silly together, too. One night when Howard was at school (he heads down there several nights a week to get stuff done), the girls and I were eating cucumbers. They had seen a cartoon where one of the characters put cucumbers on his eyes as a beauty treatment. They started fooling around and were shocked when I told them people still really did that. After dinner I had them lay down on the couch and took cucumber slices and placed them over their eyelids. It was all very fun. Hope you enjoy the pictures - they still make me smile.

Howard's making progress in regards to his demo reel and job search. He has a solid lead on a position that we'd all be thrilled if he can get! He's making changes that have been requested and needs to create several new items before he can officially apply for the job. As you've heard me state before, creating stuff takes LOTS of time. So, in the meantime, he's applied for a couple of part-time things that can help pay the bills until the 3D stuff comes through. He's hoping to have something come through on one of those within the next week or two. The other may still be a few months off. I'm really proud that he's put forth as much effort as he has on trying to get things done and I think it's just a matter of time until things eventually come together for him.

Well, I think I've run-on enough for one day. Thank you all for continuing to check-in and for all of your continued prayers. I know they're part of the reason I'm still here and, with your help, I know I'll eventually be able to put this chapter of my life behind me and move on.

Love,

Deb

Hi Everyone,

I apologize for taking so long to get this update out here. I can’t believe how many people have logged-in to this site and checked on me. It’s really rather overwhelming. I got an e-mail the other day letting me know that there have been more than 10,000 hits on the site. I find that mind-boggling.

It’s been so long, I’m not even sure where to start. I was purposely waiting to update the site until I knew how I was doing; then I got busy. In May I had a CT Scan. The results were extremely disheartening – they showed that both of the tumors that I still have had grown slightly. That was an indication that we might have to change my chemo regime. The problem is I’ve now been on all of the drugs that exist for my type of cancer, so we were looking at potentially having to start over again with the drugs I was originally on 2-1/2 years ago. Before we made any decisions, my doctor wanted more information, so he sent me for a PetScan – the main purpose of the scan was to find out if the enlarged lymph nodes that I have were showing any cancer activity (meaning, was it starting to spread?). Neither of us expected the results that we got – although the tumors are still there, there was NO activity. NONE! Zip, zilch, nada! At this moment the tumors are benign. In my doctor’s words, the “cancer has gone to sleep.” Now, we just need to make sure it stays asleep – hopefully forever.

On the whole, I’m doing very well. The chemo definitely kicks my butt these days. There’s no more cancer for it to kill, so it attacks my good cells harder. It generally takes 3-4 days now for me to really start recovering. And, on a positive note, I was able to get off the chemo pump and onto the 5-FU pills (Xeloda). The side-effects of Xeloda are a bit worse (blisters on hands and feet, nausea, mouth sores, etc.) but it’s supposed to be more effective than the pump. Plus, I no longer have horrible tendonitis in my shoulder every 2 weeks! The side-effects are worth it not to have the shoulder pain.

No changes on the chemo regime I’m on. We stay the course. Although the tumors are not active it’s still very possible that there are active cancer cells within my lymph system that could become tumors if given the opportunity to reproduce. Assuming I continue to have clean scans, I will probably need to be on chemo for at least another year. At that point we’ll have to evaluate the situation and make decisions from there.

Normally, I’d have gotten on the computer and made this announcement immediately. However, the day after I got the news we all left on a very last-minute family vacation. Howard’s Mom has a timeshare up in North Carolina. Her cousin has the unit next door. The aunt that usually goes with them didn’t go this trip; the cousin that has the timeshare and her husband invited all of us to come stay with them. So we did! It was Memorial Day Weekend, so Howard only had to miss 3 days of school. We had a phenomenal time. On the way to NC we stopped at “South of the Border.” It’s a fun place to spend a few hours and the kids had a blast. I’ve included a photo of them with one of the big animal sculptures they have there. Then, we proceeded to NC. The timeshare unit where we stayed is right on the beach, so I got to pick up lots of beautiful shells (one of my favorite things to do). The kids liked the indoor pool even better than the beach. When we got there, Rachael was in a floaty bathing suit and was just paddling around. Two days later she was swimming underwater like a fish – no floaty! She was even able to swim into the deep end on her own. It was truly amazing.

I think the best part of the trip was watching my kids with all of the relatives. Aunt Claire and Uncle Ed were there, Mimi and Uncle Ken, and cousins Betty and John (who are great folks we didn’t really know before this). The week went by so quickly. On the way home we got to do more visiting – we stopped at Roland & Sue’s beach house (outside of Charleston) and stayed overnight with them. Then we stopped at JoAnn’s house in GA on the way home. It was great getting to see everyone.

Things around here have been fine, but crazy. Howard’s friend, Ed, came down the last week in April. We took the kids to Animal Kingdom (again). They had a terrific time – and so did we! It was great seeing Ed again and catching up. It had been a very long time. On a sad note, Holly died while Ed was here visiting (poor Ed!). She collapsed and couldn’t get up. We rushed her to the vet and found out that her heart was giving out. We were able to get the kids from school and bring them to say goodbye to her. Allie actually stayed in with me while we put her down. It was sad, but she was 14-1/2 years old. Not bad for a rescue animal who wasn’t expected to survive the first year. We all miss her a lot. However, it will be a long time before we take on the responsibility and expense of another animal.

The kids got out of school in the middle of May. Rachael had a big pre-school graduation. They had a luncheon at Olive Garden one day, the kids got to go to Sea World another day, and then they had a big ceremony, too. The kids sang like 20 different songs and had practiced for it for months. They wore little white caps and gowns and got “diplomas”. It was very sweet. It was kind of a landmark event for both Howard and I – we were both so aware of how easily I could have not been there. I just sat there praying I’d be there in 12 years at the high school graduation and in 16 at college!

Also in May, I had a long drawn-out battle with HealthyKids (the state insurance plan) because they dropped my kids’ insurance for the month of May. They claimed I hadn’t submitted my re-application in a timely manner. The truth was I got it in on time, but was missing some information. So, then I submitted the missing info. They claimed they didn’t get it; so I re-submitted it. They confirmed they had it. Then I got a notice stating they were missing information, so I called to find out what they needed. I was told that I hadn’t filled out a part of the form properly and that I needed to re-submit – so I did. Then, I was told they were STILL missing information – only they couldn’t figure out what, which made it darn impossible for me to provide it to them. Eventually, someone guessed that they might need the form filled out yet a different way and re-submitted for the fourth time; so I did. At this point it was the last week in April and they had already “cancelled” the kids coverage for May. After all was said and done, I lost. However, their coverage picked up again on June 1.

None of this would have mattered too much, but we had a scare with Rachael. In April she complained that she had a pain in her chest. It turns out, she had bumped herself on a slide at the playground and it was nothing; however, at the time she couldn’t remember doing anything. So, better safe than sorry, we took her to the doctor. They sent her for an EKG and an electrocardiogram (which was another crazy battle; they tried to send her for tests at a place that is known for making errors and doesn’t have a pediatric dept.). The electrocardiogram came out perfectly fine. However, the EKG showed she had a slow heartbeat and she skipped a beat while on the monitor. At first they made this sound VERY serious; she had to stop all activity – no running, gymnastics, etc. That was near impossible, because Rachael just doesn’t stop and she felt fine. After I got her in for a full physical, they gave her clearance to resume normal activities. However, they still recommended that she see a pediatric cardiologist just to make sure everything was OK. When the insurance got cancelled, the referral got cancelled – we couldn’t even get her blood tests done. So, I had to wait until June 1 to call the pediatrician back and get a new referral. This is June 15 and I’m STILL waiting for the darn thing to come through. Don’t you just LOVE HMO’s??? Unfortunately, with the insurance she has, I have a choice of 2 doctors in my entire county. And, I think her doctor is very good – it’s the bureaucracy that sucks. I’ll let you know what we find out if we ever can get her to the cardiologist. Howard and I just keep reminding ourselves that if weren’t for the fact she fell we wouldn’t have even known there was an issue. According to the doctor, one of the possibilities (we’re crossing our fingers) for the slow heartbeat is that Rachael’s just so athletic that she has a very efficient body. Hopefully we’ll find out for sure soon.

Allie had a counseling appointment earlier this week. She’s doing well enough now that she doesn’t need to go back. I think the big thing for her is my remission. It’s given her a chance to breathe a bit and worry a bit less. The other thing Allie did this week is get her hair cut for Locks of Love – they take donated hair and make wigs for children with cancer. You need to donate a minimum of 10” in order for it to qualify, so she’d been growing her hair for a while to do this. Her new haircut is really cute. I’m so proud of her for doing this. I could tell Allie felt good about herself, too (as well she should). She turned me into a puddle when she thanked me for inspiring her to donate her hair. For all of her attitude, I think she’s going to be fine. She’s now trying to think of other ways we might be able to help others. We talked about making seashell necklaces with the shells we’ve collected. Allie thinks if they come out nice we should sell them and donate the money to charity. I think it’s a great idea… we’ll see if it actually becomes reality (since we’ve not even done one yet).

Allie’s now lost her two front teeth. She looks so cute. Hasn’t stopped her from talking at all! You can see her big gap in the Locks of Love photo I took.

The kids are still doing their general activities. Rachael had her gymnastics exhibition last month (see photo). She worked all year just to be able to show off her skills there. Her favorite personal accomplishment these days is that she successfully completed a one-handed cartwheel (in practice, not at the exhibition). Although, I have to admit, she still doesn’t have the two-handed type all the way mastered – but she’s getting there! Personally, I’m more proud of her reading skills. Allie is still enjoying martial arts. She’s going to be switching instructors. Howard’s frustrated with her current class because after being in there almost 3 months, she’s still not been taught how to do a proper punch or kick. Allie did a trial for a different class and learned more in one day than she had in all the time she’d been in the first class. So, she’ll start the new class in July. The instructor is her one of her old kindergarten teachers, so she’s pretty excited. I’m excited because I watched the class and I was impressed at how much she learned. Also, it’s a total self-defense class and she’ll be in with people of all ages – from 6 to 60!

I found out that I’m eligible for Medicare starting in July. I thought this was going to be a great thing that would alleviate the hassle of the stupid “Share of Cost” idiotic insurance I currently have. After more than a dozen phone calls taking many hours I have found out that it will COST me money to take Medicare. Not only would I have to pay the $88 per month (which would be worth it to get rid of my current aggravation), but the 20% that Medicare doesn’t cover would have to exceed my share of cost in order to qualify. What that means in reality is that if I had a chemo treatment that cost $5,000, 20% would be $1,000. $1,000 is under my “share of cost,” which means I’d have to pay that all by myself! According to Medicare there are programs available to help cover the 20%; according to Medicaid there aren’t. I think it’s one of those things that totally depends on state benefits. In the state of Florida, you’re SOL. According to my friend, Vicki, if I were in Wisconsin I wouldn’t have any of this hassle! So, after all is said and done, I have to opt out of Medicare and stay on the program I’m in indefinitely.

Howard surprised me and made plans to take us to my Mom’s for Mother’s Day. I took my car in for a long-overdue oil change and, since I was in a hurry, I went to a local Midas shop (the first time I didn’t take it to Mazda). They damaged the oil filter housing and the next day, when I was coming back from my doctor’s office in Celebration, my engine seized. Initially, they accepted total responsibility for the problem and told me they’d take care of everything. However, once they got their insurance company involved they stopped communicating with me and turned ugly. It cost me $500 that they’re not willing to cover to get my car out of the shop (with its new engine). So, it looks like I’m going to have to go to small claims court to get my money back. Yet another PIA that I just didn’t need! Oh, and when we got the OTHER car serviced before taking it to NC, we discovered there was a problem with the bracket that holds the motor in. That, plus four new tires, and $1,000 later we were on our way. So, May was NOT our month for car karma! I’m sincerely hoping we’re done with all of our car problems for quite a while.

Howard finishes up his Maya course today. He thinks it will only take a couple of weeks to get the majority of his stuff together to a point where he can start sending it off. Please keep us in your prayers – we need him to get a great job SOON.

All this bad stuff happened before I got my great news about remission. So, as far as I’m concerned, we’ve finally turned over a new leaf and things are going to be getting better from this point forward! I’m looking forward to spending time with my kids this summer. We’re heading down to spend some time with my Mom at the end of the month. Also, I may have an opportunity to start working on a part-time basis for a bit starting in July – I won’t know if it will work out until it actually does or doesn’t.

One of the newer things I’ve started doing is that I’ve joined a tele-support group through the Cancer Recovery organization. On Wednesdays at noon I call in and get to speak with other survivors. The moderator is Rev. Michael Gingerich (who’s an amazing, inspirational individual in his own right). There’s always a set topic for the day (sometimes we adhere to it, sometimes we deviate). I didn’t think I’d get much out of it, but I really have. Sometimes it’s nice to know that there are others worse off (as horrible as it sounds) and other days it’s nice to know that other Stage 4 people have survived long-term. Plus, invariably I find out about resources that I didn’t know existed. I’ve said it before, but I really mean it, if you know anyone with cancer, please send them to www.cancerrecovery.org. The resources there are amazing.

Hope you all are well and that you’re having a great summer. I apologize to each of you who has worried about me because it took so darn long for me to get the update out here. If it’s been a while and you’re concerned, you’re always welcome to e-mail me. I check e-mail almost every day and I really do write back. I’m not nearly as loquacious via e-mail, but I do reply!

Thank you all so much for your continued support. At least for today, I’m winning!

Love, Deb

Hi Everyone,

Gotta admit, I’ve been putting off this update for a couple of weeks because I just didn’t know where to start. Prayers needed, again, PLEASE.

Cancer’s back… with a vengeance. Found out in August that the enlarged lymph nodes had grown considerably. September 1’s PetScan showed that not only were the lymph nodes full of cancer, but it had spread into my chest area. Spoke with my oncologist and found out that basically, the only thing he can do is start me over again on the drugs that I was originally on when all of this started.

Howard and I didn’t like the sound of that, so we started researching everything all over again. We came up with a place called Cancer Treatment Centers of America (www.cancercenter.com). I spoke with my doctor about them and he encouraged me to go. CTCA has four branches – Chicago, Seattle, Tulsa, and Philadelphia. I had looked into them when I first got sick but they didn’t accept Medicaid, so it wasn’t an option. As of July I’m on Medicare, which they do accept. I called and they were willing to work with me, so I made an appointment to go see them and see what they could do for me. They assigned me to the Philly branch and scheduled an appointment for me the following week.

My friend, Allegra, met me in Philly and accompanied me to the center. I went through a 4-day evaluation process during which time I was introduced to all of their different departments – oncology, pastoral services (including stress reduction), PNI (mind/body/spirit), naturopathy, and nutritional. They recommended a chemotherapy regime that was somewhat different than any I’d been on before, so I decided to stay and try it. While I was there I had a recurrence of pneumonia, which I’d been fighting already for almost a month. I ended up in the hospital there for a week. While I was there they were able to run additional tests. We discovered that I have a cancerous mass in my left lung. CTCA recommended radiation treatment, which is something we were told locally they were unable to do.

So, the bad news is that the cancer’s back and is a lot worse than we thought. The good news is that I have a whole new line of hope for a treatment that is not available locally. I leave Wednesday for Philly and will be there for 3 full weeks (15 radiation treatments) plus chemo. This reduce the size of the lymph nodes quickly and, hopefully, with the new chemotherapy, I have a great chance of beating all this eventually. In addition to the radiation, CTCA has access to a number of chemo drugs that they’ve found to be effective on colon cancer that are not available to me through my local oncologist. CTCA has a wonderful mantra – if you’re breathing, there’s hope!

While I was at CTCA I met a woman in the lobby. She had been diagnosed with brain cancer and had been told that she only had 3 months to live – 15 years ago! She was there for a routine check-up and had been cancer-free for more than 10 years. By the way, her doctor is my doctor. Very inspirational.

I’m bummed about having to be away from my girls and Howard for 3 weeks. However, as we’ve explained to them, better I should be gone 3 weeks now and then back than not go and not be around permanently in another year or two. Harsh, but pretty much reality. I’m excited that we’ve found a program that fits with our beliefs and I’m really relieved to have extra support in some of the other areas I mentioned above. I leave on 10/4 and will be back on 10/25. At least I’ll be home for Halloween!

My brother is meeting me in Philly and will “hold my hand” for the first couple of days of treatment. I have a very good friend (back from my junior high school days) that lives about 40 minutes out of Philly. She came to the hospital and was my designated support person when I had to have my bronchoscopy and has already been an amazing source of strength for me. It helps to know she’ll be close by. I have a lot of other wonderful people in my life who’ve offered to come and visit me while I’m in Philly. Not sure how it’s all going to work out yet, but I know it will.

On top of all of this my Mom’s been having some heart problems and was just hospitalized so that they can figure out what’s going on. She’ll probably have an angiogram next week. My poor brother is split between the two of us, trying to keep us all together.

So, that’s my update. All-in-all, my spirits are high and everyone here, including the girls, is really OK. I’m just REALLY tired. It’s been a lot to deal with. I know it will all be alright eventually, but I have a feeling the next couple of months aren’t going to be a whole lot of fun. In a long-term picture, I’ll probably need to go to Philly one week per month after all of the dust settles for chemo treatments.

As always, SO sorry for the delay in this posting. I’ll attempt to keep up while I’m there, but promise nothing. However, I will be able to check my e-mail while I’m there, so if you have time, I’d love to hear from you. I have a feeling I’m going to have a lot of time on my hands!

Love, Deb