Fargo Family Update

Hello Everyone,

Just a quick update... the MRI came back clean (I knew it would). That means the numbness in my hand and foot is definitely a result of the chemotherapy. I'm still having trouble with the foot, but the hand is much better. I only have a brief verbal on the PetScan... there's one small spot of cancer left. I don't have any details on where it is or what it means re: treatment. I'm guessing it's in the lymphnodes since that's usually the last to go. I have a doctor's appointment tomorrow morning and I'll find out more then. I'm still crossing my fingers that he'll be able to take me off of the drug with all the side effects without compromising my amazing recovery.

You'll have to wait a bit before you get the complete story. My brother is off on vacation for the rest of this week and won't be able to post anything until he returns next week. However, I will keep journaling - it will just take a while to get from me to you.

Love,

Deb

Hi Everyone,

Had a doctor's appointment this a.m. before chemo. I'm definitely on the road to wellness. The cancer is more than 95% gone and only exists in one spot on a microscopic level. Keep praying, I'm almost there! Also, not to be greedy, but if you could add to your prayers for me that the cancer go away AND never return I'd sure appreciate it.

Rather than take me off of the drug that's causing all of the side-effects, they added more drugs to counter the effects. The new drugs worked in that my hand still swelled a bit, but not nearly what it did 2 weeks ago. Unfortunately, both of my feet are numb now, but I can still walk, so it's just uncomfortable, not really a problem per se. Next week is Week 4 - my week off! Boy, am I ready.

I'm hoping this week's chemo won't sap my energy too much, because I was feeling pretty darn good this past week. It was a taste of how I felt before I got sick, which just makes me want to be all the way well that much more.

Thank you so much for your long and continued support throughout this ordeal. It's been appreciated more than you'll ever know.

Love,

Deb

Hi Everyone,

Things on this end are still status quo. I'm continuously amazed by the cards and e-mails I am still receiving from you. All I can say is, "thank you."

Well, Howard has a decision about what he's going to be doing. Just yesterday he got accepted to The D.A.V.E. School (no small feat as they only accept 25 students per quarter). It's a really cool 1-year program that will give him an associate's degree in Digital Animation and Visual Effects. The school's been around for four years now -- we visited and discovered that it's right up his alley. It should also give him industry contacts to be able to do character sketches professionally (by the time he graduates and possibly before). We were both impressed by the things we saw the students doing there (like placing themselves in scenes from movies so it looked like they were actually part of the scene). The school is a bit of a hike - it's about 40-45 minutes from here and is on the Universal Studios lot. You can stand in the parking lot and watch the rollercoaster over the fence.

There are no words to describe how excited I am that Howard's finally going to put his artistic talent to use. Those of you who've seen his artwork know what I'm talking about. For those of you who haven't, take my word, he's a phenomenal artist! From what he told me, his artwork and painted miniatures totally blew away the guy who was interviewing him (who also happens to be the guy who started the school). The only catch now is financing. It's a very expensive private school. We're crossing our fingers that we'll be able to get a loan to cover the tuition. One way or another, we're determined to find a way to make this work. He'll be starting in late-September and will finish up in September, 2005.

We stopped at Johnny Rockets last night for dinner to celebrate (and to wait out the hideous traffic). The restaurant is in the Orlando tourist area and is right across from where FAO Schwarz used to be - they still have a building-high Raggedy Ann doll outside. It was really sweet to see the girls so excited for their Dad. Allie thinks it's SO cool her Daddy's going to be going to school when she goes to school. However, always the consumate salesman she said to Howard, "Dad, I'm SO proud of you. This is your night. You deserve to do whatever you want to do. And, even though it's late, if you want to take Rachael and me to see Raggedy Ann when we're done eating dinner, then that's what you should do." Me Too (a.k.a. Rachael) said, "yeah, Dad, that's what you should do." Howard looked at me, rolled his eyes, and said, "well, at least we know she'll never starve." He also said, "I never really got it before. But now I know what they mean when they say salespeople are born from day one."

On a personal note, other than fighting off a common cold, I'm feeling really good. Overall, I've had a lot more energy. And, I've even had a couple of days over the last few weeks that I've almost felt like my old self. I didn't have chemo this week, so I was able to work more. I'm taking tomorrow off to try to take care of myself, get rid of the cold, AND help Howard clean this house up a bit. My next CATScan is scheduled for 6/25. I have a routine doctor's appointment on Monday. I'll find out then if I'm going to have a PetScan, too. Since the CATScan showed nothing last time, I would expect it to show nothing again. However, it's the PetScan we need to come up clean and, at this point, I don't have one scheduled. So, I'm not sure what's up with all that, but I'll definetly find out.

The girls have started their swimming lessons at pre-school. Allie's doing much better this year and is really starting to swim. Rachael's class is doing intro-to-water games. She's actually capable of doing more than her class does, but she's having fun, so that's all that matters. Eventually they'll actually get into the pool!

That's about it on this front. Sorry the postings have been so sparse, but it's all good - it means there's really been nothing to report. I'm doing incredibly well and am getting on with my life as much as I can. I'm looking forward to the day my oncologist can tell me that all the cancer has left my body (I think he's starting to look forward to that, too). And, being the patient person I am, I'm REALLY hoping that will be after my next PetScan. However, if it's not, I'm still grateful for the amazing/miraculous progress I've had and will just hope for the next one.

Love,

Deb

Hi Everyone,

Had a doctor's appointment yesterday. Things are still status quo.

I asked about the CATScan vs. PetScan. I have to have the CATScans every six weeks due to the study. However, I'm only going to be getting the PetScans every 3-4 months. That means I'm on the oxaliplatin for the long haul, or until it causes "major" problems. "Major" is pain that lasts more than a week or numbness severe enough that I'm unable to button buttons or manipulate small items with my fingers. I found out that I'm one of two people in the doctors' practice that's had incredible results with this combination of drugs. According to my doctor, she's been bugging him, too to try to get off of the oxaliplatin, and she's not in the case study! However, he's never seen these results when Avastin has been administered without the oxaliplatin. So, that's why I'm stuck with it.

On the flip-side of things, he tried to make me realize just how out of the ordinary these results are. Based on his experience and the history of my type of cancer with the drugs that have existed up until now, my chances of survival were slim, but not impossible. However, if I had made it, it would "normally" have taken 2-3 YEARS to get to where I am now instead of just 5 months. So, basically, stop whining about the minor side-effects of the drugs and be grateful that I'm doing as well as I am.

I was surprised how disappointed I was that I'm going to have to stick with all the drugs for so much longer. I think I'm OK with it today, but yesterday was kind of a bummer.

My hormones still aren't where they need to be, but at least I'm not at the level of a 77-year-old woman anymore! I'll get a new prescription tomorrow. I'm hoping that adjusting my levels will help me feel a bit more "normal" as well as giving me a bit more energy. Although, I really can't complain about my energy level -- on the weeks that I have short-chemo days, or no chemo at all, I do pretty well.

The whole family went with me to the doctor's office. Allie had asked in the car what "abajo" meant (a Spanish word she heard on Dora the Explorer). I said I thought it meant "under" but that she could ask any of the nurses when we got to the doctor's office because they are all bilingual. When we got there she was a bit shy and decided not to ask. Then later, right before we left, Howard prompted her again to ask my chemo nurse her question. She said, "Ms. Michelle, where do babies come from?" Michelle turned red. Howard turned red. Howard shouted out, "No, not that question! The Dora question!" Allie said, "Oh, yeah - that one. What does abajo mean?" I'm still laughing, just thinking about it. So, Allie & I had an anatomy lesson last night and she now knows how babies are born. I'm safe until she asks how the baby gets into the Mommy's tummy!

I have my long chemo day tomorrow. It's week #1 of my fifth cycle, which technically means only my 17th week. That's pretty soon to have the results I do. I just need to keep focusing on how blessed I am.

I'll continue to post as I have information. As I mentioned in a previous posting, my next CATScan is Friday, June 25th. Hopefully, it will continue to show us absolutely nothing!

Love,

Deb

Hi Everyone,

Sorry it's taken so long to update. It's been a busy couple of weeks.

I went for my "short" chemo on Wednesday and after a number of delays found out that due to my side-effects, they've kicked me out of the case study. The biggest side-effect I've had a problem with is diarrhea, which I thought was typical for chemo, but I guess they have acceptable and unacceptable ranges. I'm somewhat indifferent about being kicked out since all of the medications I'm currently on are on the market and should still be covered through Medicaid. In the end on Wednesday, they ended up deciding not to give me chemo and to give my body a chance to recover a bit.

I have a doctor's appointment tomorrow to go over the CatScan from Friday. I'm assuming it will come up clear (since the last one did). However, you never want to be too presumptuous! I actually have the films - what I don't have is the expertise to read them. I think my doctor is planning on doing the PetScan at the end of July. That's really the one I'm anxious to get back - I'm hoping it will show me as cancer free.

I'm unsure at this point if my chemo regime will be changing. After convincing me not even 2 weeks ago that I needed to stay on the oxaliplatin, my doctor is seriously considering taking me off now that I'm out of the study. I tried to get a solid answer out of him and he replied, "You're trying to nail me down here and I'm looking for wiggle room! I'm about 80% sure I'm going to stop the oxaliplatin, but I need to think about it seriously before I tell you I'm going to do it. So, the best I can give you right now is a 'maybe.'" So, that's where it stands! I think he's off on vacation and then to a conference this week, so I think I get full chemo Wednesday. Next week is Week #4 (already), which I have off. So, I probably won't find out how things are going to be handled until after July 12th.

I can't believe I didn't open with this... I found out Friday that I've been approved for Social Security Disability!!! That's going to make all the difference in the world to us. It means we're going to be financially OK until I can get back to work full-time. Payments should start in July. My local caseworker said he'd never seen an SSD application get approved so quickly. (Once again, I think someone's looking out for me!) I think I already mentioned that I got a phone number (in Washington DC, I assume - though I'm really not sure where she was) for the actual caseworker who was processing my application and I spoke with her a couple of weeks ago. She talked to me for almost an hour and faxed the necessary forms to my doctor that day, so I had a pretty good feeling about it. Also, I followed up with my doctor's office and knew they had returned the forms to her in just 2 days. All that being said, I feel very lucky (and relieved) to have been approved so quickly.

Howard and I were hoping to go to Connecticut this summer to visit with his family. His Mom is building a new house; we're so excited for her and we're both dying to see it. It's almost done now and she's planning to move in within a month or so. We were planning to drive up at the end of the summer if the disability money came through. However, when we looked at the calendar we realized we didn't have much time to plan a trip like that - Allie starts school on August 9th. Neither of us were looking forward to two days up in the car and two days back, but I told Howard that short of finding plane tickets for under $150 each, we didn't have much choice. So, I got online and wouldn't you know, I found tickets for $123 round-trip! We're heading down to my Mom's this week for the fourth and thought we could go straight from there (so my Mom could watch the dog). It all sounded great - until we thought it through. After some real consideration we realized we really can't afford it. The trip would wipe us out financially and leave us with absolutely nothing to re-pay towards all of the medical bills. So, we've reconsidered. We're both really bummed we're not going to be able to do any type of family vacation. However, since we both came to the same conclusion, I'm pretty sure it's the right one. I'm doing well enough that, god willing, we'll have plenty of family vacations once we're on our feet.

We're still waiting to find out if the financing is going to go through for Howard's school. We thought everything was set, but Sallie Mae never got the forms. Howard's Mom (our co-signer) faxed them a second time and they were unreadable. So, we're still trying to get them to where they need to be. Once they get there, it will only take three days to get an answer. So, hopefully we'll know something by the end of the week! One way or another we're determined to make sure he can go this Fall.

We had a phenomenal day today. Some friends of ours from Pittsburgh are vacationing at Walt Disney World. Howard & I took the girls and met them at one of the hotels there for breakfast. We discovered that there's actually a lot to see and do at Disney for free on all of the resort properties without ever going into the park. The girls got their first boat ride ever (Allie LOVED it; she said it was her favorite part of the day). I think it was the best day I've had since I got sick. My energy level was great and the kids had SO much fun that I was just enjoying watching them. By the end of the day my cheeks hurt from smiling so much. Just as we were about to leave, the Florida storms rolled in. Our final boat ride (back to the hotel where the car was) got cancelled to due lightning, but the bus got us to our parking lot in just enough time for us to get the girls strapped in and us into the car before the skies opened up! The girls slept all the way home. We'll definitely be going back down there again.

I've prattled enough for one entry. If I have any info to post after my doctor's appointment tomorrow, I shall. However, if I don't post anything, you can assume the test came back clean.

As I mentioned above, we're heading down to my Mom's for the weekend. My cousin from New York is going to be down there as well. It should be a fun time and I'm very much looking forward to relaxing.

Hope you all have a happy and safe Fourth of July.

Love,

Deb

Hi Everyone,

Results from Friday's CatScan aren't awful/terrible, but it didn't come back quite as I'd hoped. There are two separate areas that came back "questionable". Could be absolutely nothing; could be something - we just don't know. One spot is in the colon. The other is on my lung.

What next? I need to go for a colonoscopy to find out about the one in the colon. The one on the lung is SO tiny, we just need to watch it. If it goes away, it was nothing. If it grows it will be biopsied.

I have to admit, I have a bit of trepidation re: the colonoscopy. You'd think that after everything I've been through such a thing wouldn't phase me! And, to some degree, I'm not nearly as uncomfortable with the idea of it as I would have been pre-cancer. I had to drink an entire gallon of that same fluid the night before my surgery. At the time I was having trouble eating or drinking anything and I was so bloated and my stomach was so cramped (due to the tumors) that it was hard to even get a glass of water in, let alone a gallon. So, comparatively speaking, this should be a walk in the park! (Yeah, I'll just keep telling myself that.)

I spent the morning on the phone trying to get all of my "medical stuff" worked out. My appointment yesterday was with Annette, the P.A. I see when my oncologist is unavailable (he's on vacation right now). I had asked if I was going to have the oxaliplatin on Wednesday. She didn't know and said she'd check with my doctor and call me back. The message she left said my doctor didn't want me to have any chemo at all until after the colonoscopy results came back. That made no sense to Howard and me at all. So, first thing this morning I called and questioned it. Annette couldn't explain why I wasn't going to have chemo and said she'd try to reach my doctor and would get back to me with an explanation. My doctor actually called me back (pretty impressive considering he was on vacation with his wife and without his kids)! He explained that he's not sure where we're going to have to go with all of this. He didn't want to give me the oxaliplatin because it may be causing the problems I'm having with diahhrea and he doesn't want to give me the Avastin because if the colonoscopy shows anything that would need to be biopsied, the Avastin can cause bleeding problems. So, basically, I should just enjoy the break and attempt not to worry too much about it! I am a bit worried since I didn't have chemo last week and next week I'm off - by the time I go again there will have been a 4 week break. However, he's the expert and he says I shouldn't sweat it.

Multiple calls after that were trying to find a gastrointerologist in my area that would take Medicaid. However, in the middle of my investigative calls, I got a call from my old GI's office. They said that this a.m. when my oncologist's office called to find out if they'd take medicaid, they didn't have a chance to let them know that although they don't, they sometimes make exceptions for patients that they've seen before. It was my GI guy that originally found the cancer when he was looking for the illyus (intestinal paralysis). He's also the guy who told me I should go to the emergency room but that I needed to go to Florida Hospital because that's where the doctors were that would be able to help me. Any any rate, his office was supposed to get back to me around lunchtime with an answer on whether or not they'd make an exception for me. Howard, the girls, and I were out this afternoon, so I didn't have time to follow-up. However, they never called. I'll need to check back in with them tomorrow morning. If they won't take me, I don't have a lot of options. There were zero GI's in my county and only four practices in all of Orlando that I'd be able to go to. If my old GI doc won't take me, the catch is probably going to be getting in as fast as my doctor would like (I'm back from vacation next Tuesday and would have to have the procedure before Friday so that the results would be back in time for my oncology appt. on 7/12).

I'm hoping to get everything wrapped up and scheduled tomorrow. If not, I'll be finalizing things from my Mom's house at the end of the week!

Since my chemo got cancelled for tomorrow, I'm going to be playing instead. Our friends from Pittsburgh are still in town and had asked us if we'd be free. Originally, we said "no" due to my chemo, but since that's no longer an issue we're going to get together with them. Then, Thursday we're off to my Mom's for the weekend. I'm looking forward to spending some time with my brother and with my cousin (visiting from New York) who will also be in the area.

Still no answer on the financing for Howard's school. Every day we hope we'll hear that day... but maybe tomorrow!

That's it for now. I doubt I'll have time to post anything tomorrow and may or may not write anything while I'm on vacation.

Once again, I wish you all a happy and safe Fourth of July.

Love,

Deb

Just a quick update... Had a wonderful Fourth of July. We took the girls to see their first fireworks display. They had a blast. I got a date night with my husband - we went to see Fahrenheit 9/11 (very interesting and worth the price of admission; just keep your head on and it's easy to separate the fact from the propaganda). Howard got some time off from the kids and me. And, I even got a play day out with my Mom; just the two of us. My girls got to see their Uncle Andy (whom Rachael had been desperately missing) and their Cousin Stephanie from New York. A good time was had by all.

Tuesday morning I woke up with a bit of a sore throat, but nothing major. We all played in the pool at my Mom's house. Allie is starting to swim on her own now and Rachael has a well-developed doggie-paddle (Mom got some great pictures; I'll post a few when she sends them to me). Got home Tuesday night and I started in with a tight cough. Wednesday morning I had an appointment with a gastroenterologist and then when directly to my other doctor's office to get the cough checked out. I have bronchitus (he good news is that it came on so fast I'm not nearly as sick as I usually am when it hits; I'm crossing fingers that the antibiotics won't bring the thrush back). I came home and started the prep for the colonoscopy I had today. We all had to be down at the clinic at 6:30 this a.m. (that would be the clinic that's a good 45 minutes away from here). So, it was an early morning!

Colonoscopy came up clear! No colitus or cancer!!! So, it looks like the problems I'm having probably are from the chemo - that's my theory anyway. The worst thing about the procedure was the prep. I was sound asleep for the rest of it, so I'm happy to say I was totally unaware of the unpleasantries. I have an appointment with my oncologist on Monday to go over the results and to find out where we go from here.

When I got home from vacation I found a letter from the Social Security Administration. It seems my local rep made a mistake when he told me I'd be receiving my first payment in July. I'm authorized for July and will receive my first payment the second week in August. Needless to say, I was not very happy about the error. I'm just trying to stay focused on the positive - that I am approved and we'll start getting some money soon.

Part of Howard's financing for school came through. We're about $9,500 short and we're now exploring our various options to figure out how we can make this work. As a last resort, we may have to pull money from an IRA account. However, one way or another, he WILL be starting school in the Fall.

That's it for now. I'll update after Monday's appointment next week.

Love,

Deb

Hi Everyone,

Had my doctor's appointment this a.m. I'm off the oxaliplatin!!! And, I'm back on chemo, starting Wednesday.

I feel like I'm entering the fifth stage of this cancer experience:

Stage I -	Pre-Cancer: when I thought I threw out my back and I was in total agony. It also included the "Oh, my God, something's really wrong with me" stage and admission to the hospital, right up until the operation.
Stage II -	It's Cancer: this included the hospital and initial recovery stage. All I did was concentrate on getting well, 24 hours a day, 7 days a week.
Stage III -	It's Back and It's Ugly!: this stage started when I got the results of my first CatScan and I found out that huge tumors had grown back. I remained focused on getting well 24 hours a day, 7 days a week. It included the first six weeks of chemo and lasted until I got my next CatScan. That's when I was reminded that with God on my side, anything is possible. And, being lucky enough to start on Avastin certainly didn't hurt.
Stage IV -	New Normal: I started to accept the reality that the cancer was going away at a miraculous rate. I started working part-time and settled into a new daily routine. I also came to accept that minor setbacks and alarms are part of life with cancer and, short of being a pain in the butt, nothing to freak out over.
Stage V -	Remission/Life Goes On: I received my new chemo schedule today. As mentioned above, my chemo regime will no longer include oxaliplatin. I think that's going to have a huge effect on my quality of life. I have a feeling this stage will be the longest I've hit thus far. My doctor's cautioned me that I'm going to be on chemo a long, long time (years).

Logically, I can't quite explain why I'm feeling the way I am. However, I'm really excited about entering this new phase. I feel happy and free. I think the reasons may be two-fold: the oxaliplatin was making me that sick (I thought I was going to have to stay on it until it totally knocked me out of daily activities, which was a real downer) and, the fact that my oncologist doesn't think it essential that I stay on it means he believes I can remain healthy without it.

As of Wednesday, I will have a new five-week on, one-week off schedule as follows:

Week 1: Avastin, 5-FU, and Leukovorin
Week 2: 5-FU and Leukovorin
Week 3: Avastin, 5-FU, and Leukovorin
Week 4: 5-FU and Leukovorin
Week 5: Avastin Only
Week 6: Nothing!

By cutting out the Oxaliplatin, my "long" days will now be more than 3 hours shorter!!! My new long days should now be UNDER 2 hours actual chemo time!!! My Weeks 2 and 4 will remain the same as they've been. And, I should now be able to drive myself to all appointments.

Some time ago I found out that there's one other person in my doctor's practice that's had the same type of fabulous results that I've had. I asked him today if it would be possible to give her my contact information or to get permission from her to have me contact her. He winced and screamed! He said he knew one of us was going to ask him for that and that he really did not want to deal with us as a team! However, he's a good guy and I think that, against his own instincts, he'll make it happen. I'm really curious to find out if there are commonalities in what she and I are doing, in addition to the chemo drugs we're receiving.

On a personal note, I found out last week that I'm going to be able to go to Boston over Thanksgiving to attend my cousin's kids' Bar Mitzvahs. Before I got sick we were all planning to attend. Then, due to cost, I didn't think I'd be able to make it. However, my cousin wanted me there enough that he got me a ticket. My aunt & uncle actually offered to fly all of us up, but due to Howard & Allie's school schedules, it would just be too hectic. It's still quite a ways off, but I'm really looking forward to seeing my extended family. It's nice to be loved.

That's about it for the update. I don't anticipate anymore new news any time soon. However, I'll try to continue posting approximately once a week. As always, thank you all so much for your continued prayers over all of these months and your never-ending support.

Love,

Deb

Hi Everyone,

Hi Everyone,

Nothing new to report. I'm happy to say things are settling into status quo these days. Howard just saw this over my shoulder and said I should NEVER use those words EVER again - he said that's what got me into this mess into the first place!!! In fact, he's just forbidden me to ever use those words again. Can you say "superstitious"? OK, may be not status quo - how about "a lot better than before" or "slightly more comfortable."

I'm enjoying my new chemo regime (in contrast to the last one; not that I'd recommend it to a healthy person). My "long" sessions are significantly shorter and the fatigue hits the day of chemo instead of the following Saturday, which killed every other weekend for me. I'm definitely more tired than usual the first few days following a "long" day, but it's more annoying than crippling.

Received a letter from the Department of Children and Family Services yesterday that said that because I will now be receiving disability, my medicaid benefits are about to be radically cut, effective September 1. The letter doesn't make much sense, so before I really panic I'll call [tomorrow] and get the whole story. The way the letter reads now, ¾ of my disability check would have to go to pay my share of medicaid each month; I wouldn't even have enough left to pay the mortgage. I'm hoping we're reading it wrong.

This Tuesday both my girls go for their first eye appointment (it looks like Allie may need glasses, poor kid). Wednesday is Allie's birthday (she's turning 5). Thursday we have a "meet & greet" at Allie's new school where she'll get to meet her new teacher and see the classroom. Immediately after that, we'll pick up Rachael and head down to my Mom's for a quick weekend. My best friend, Vicki, is coming in from Wisconsin and will be in Ft. Lauderdale, which is less than an hour from my Mom's house. I haven't seen her since last year's Vegas trip, so I'm pretty excited. We need to come back early on Sunday because Allie starts Kindergarten that Monday!!! She's excited and so are we. She had been acting funny for almost a week and we discovered that she was really nervous about going to her new school. However, when she found out that Daddy was a little bit nervous about going to his new school, she was able to accept it all much better. Since we talked about it, she seems OK and appears to be ready.

This Wednesday will be my last "chemo day" with Allie. She's become the little mascot of the chemo ward - everyone there loves her. She knows all the nurses, a bunch of the patients, and has even gotten friendly with some of the patients' spouses. She's very comfortable there and it's turned something that isn't so great into something special for both of us. I'm really going to miss bringing her.

The other thing that's been filling my time is that I've started writing a book. Quite a few people have suggested that I turn this experience into a manuscript, and that, combined with a little inner voice, convinced me that it's a task worth tackling. I've written the first few chapters and will be working on investigating the non-fiction publishing process over the next few weeks (after striking out at the local library, I have books in transit from amazon.com). My goal is to get a proposal out to a publisher (or publishers depending on how I choose to proceed) by the end of September. I'm thinking it will probably take me about 6 months to complete the book.

I'll be in touch again within the next few weeks. As always, thank you for your thoughts and prayers. I may be in remission, but I'm not so cocky as to be certain that the worst is behind me (though I pray it is).

Love, Deb

Hi Everyone,

I know, I know, it's been a while since I last posted.

Thank you to so many of you who inquired about our safety from Hurricane Charley. The storm came right through here Friday night. We were very lucky not to have any damage. Power was out all over the place. On Sunday, when we still did not have power, we decided to escape the calamity the existed in our area. We packed up quickly and headed down to my Mom's house. My Mom was vacationing up in Boston, so we had her house to ourselves. Each day we checked in to see when Allie would need to go back to school... first school was cancelled Monday and Tuesday. Then Wednesday. Then, finally, for the whole week. It was week six of my chemo (my off week), so we didn't have to rush back for that. We had a fabulous vacation - we were all able to relax and play together. We swam and swam and ate and ate. We came home on Saturday.

Allie and Rachael started back to school yesterday. Allie came out of school happy and excited to be back. She's "Student of the Week" in her class. She says she got it for good behavior - she may have, but I still haven't had a chance to check with the teacher to see if each kid gets a turn, or if she really earned it. Either way, I couldn't be more thrilled that she's loving school.

I had a doctor's appointment yesterday. My doctor seems to think I'm doing very well and that the cancer's probably gone at this point - that would put me in total remission. I'm waiting to get a call to schedule a CTScan and PetScan and have another appointment with him in two weeks. The disappointing news I received is that he's changing locations. He's going to be opening up a new office in Celebration, FL - about 20 minutes south of the current location. That will mean if I still want to keep seeing him I'll have at least an hour drive, maybe more. As it stands now, I'm planning to stick with him - I'd have to make the trek once every six weeks. I could continue receiving chemo at the current location.

While I was at my doctor's appointment, he gave me the name and contact information of the other person who had the "miraculous results" like me. I haven't contacted her yet, but plan to do so within a week or so when I get a chance.

The other surprise I had yesterday is that when I went into work, there was someone sitting where I usually sit. The company has hired more people and doesn't have enough computers for everyone. Short-term, at least, it means I'm out of a job. Long-term still remains to be seen. If/when they get more computers in and find a place to put them, they may have me back. Quite honestly, I'm not holding my breath. In the meantime, I'm grateful for the small amount of freelance work I currently have. I'm sure in the long-run things will work out - they always do.

I think that's the update in a nutshell. I'll post a note when my tests are scheduled and again after the results are back (my dr's appointment is the Tuesday after Labor Day).

Love, Deb

L'Shana Tova,

A happy and healthy new year to all. Sorry it's been so long since my last posting. Now that things are more routine, I'll try to post something at least once a month... it may not be much more than that. Take it as a positive sign that my life has reached a "new normal" stage. Howard has one more week before school starts. I think we'll all be busy then.

Lately we've been busy attempting to avoid the hurricanes. As I mentioned, after Charlie hit, we had a wonderful vacation at my Mom's house. Frances was so huge, there was absolutely nowhere to go! We were very blessed, once again, that we had no damage. We were without power for 5 days and without phones for 7. I'm still thanking God for air conditioning each time I leave the heat and enter my wonderfully cool and dry home. We actually evacuated for Ivan last week... Howard has a cousin up in Georgia who was kind enough to take us all in (including the dog). We stayed one night, the hurricane changed course away from us, so we turned around and came back home.

I received test results back several days ago from the CTScan and PetScan... there is no longer any evidence of cancer!!! They can't authoritatively tell me I'm in full remission because they can't PROVE there isn't any cancer. However, the fact that they can't prove there is works for me. Now I just need to stay in remission for 5 full years before they'll pronounce me cured! I'll still probably be on chemo for at least a full year, but that's OK because I'm winning the war... it's just a matter of time. The other news I received is that my genetic tests turned out negative... that means the cancer was not caused by a mutated gene. That's huge news for a couple of reasons... 1) those with the mutant gene have up to an 87% recurrence rate and 2) my kids are no more at risk for cancer than anyone else.

I've actually not been feeling all that well lately. I've been exhausted and a bit nauseated. I was thinking it was from the chemo. It was only today that I figured out that they had put me on a new drug several weeks ago to alleviate diahhrea. It was shortly thereafter that I started feeling bad. I've had a chemical taste in my mouth that I just can't get rid of, I've been really irratable and constantly fatigued. So, I think I'm going to stop taking it immediately and will check in with my doctor's office on Monday. I'm sure I'll be back to the old me within a week.

Allie is doing phenomenally well in kindergarten. She has great teachers, is learning a lot, and loves school. We have our first open house this week. I'm looking forward to finding out about what they're doing in her class and what type of student she is.

Rachael, on the other hand, was not doing so well in pre-school. They kept changing teachers and 90% of her time was spent in free play. She was bored and was not learning anything. So, we pulled her. Since I'm not working there's no reason to try to come up with the extra money to send her somewhere she's not really happy. I'll keep her home until I can make enough to make it worthwhile to put her back in pre-school or until she gets bored and really wants to go, whichever comes first. I worked on the alphabet with her on Friday and I think she learned more in one day than she had her last 2 months in school, so I know I've done the right thing!

I hope this is a healthy year filled with happiness for everyone. Don't forget to count your blessings.

Love, Deb

Hi Everyone,

I guess I should start out by apologizing for the gap between updates. As I mentioned in my last posting (in September, was it?), I've gotten busy just living my everyday life. No news is good news! I'm still doing very well and, quite frankly, there's not much to report.

We've all settled into a new routine. Howard's out for school before the crack of dawn (he leaves the house at 5:30). I'm now responsible for getting the girls up and getting Allie to school on time. Rachael's out of pre-school and home with me. So, I've found a new career I NEVER thought I was capable of managing - I'm a homemaker and stay-at-home Mom.

Cancer update - I've not had any scans since early September. However, everything appears to be going well. This week I start Week #1 of my last 6 week cycle in this round of chemo. At the end (late-December) I'll have scans again and then we decide where we go from here. Originally, my doctor told me I'd be on chemo for years (at least 2-3). Now I'm doing so well he's actually re-thinking it and is considering letting me get off in March, which would be one full year of treatment. Every step of the way he's been really honest about letting me know that he really has no idea how to handle me because there's not enough precedent to have a protocol. I'm blazing new territory! So, I may be on for years, or I may only be on for 3-4 more months. We're all taking it just one step at a time.

One of the new treatments I just started receiving last appointment was a shot of testosterone. My hormones have been wacky since the hysterectomy and due to adverse side-effects, they don't want to increase my hormone replacement meds. It's hard to explain the difference, but I finally feel like "me" again. I have a bit more energy. Overall, the biggest affect was on my state-of-mind. I don't feel as out-of-it as I had before. I'm still dealing with the short-term memory problems (I write EVERYTHING down now), but I've come to expect that I won't remember things, which enables me to work around the problem. I have days where my memory isn't so bad and other days where it's horrible - c'est la vie. As I said, there are definitely ways around it.

My biggest frustration in life these days, and one that's taken LOTS of my time, is trying to get our insurance straightened out. I had to re-apply for Medicaid at the 6-month mark (mid-October). When I did, they said, "You have retirement accounts. That disqualifies you. We're closing your case." When I had originally applied for Medicaid, I actually brought my retirement account statements with me to the appointment and was told they were exempt - so much for that. I spoke with a lawyer who said, "yes, they do count against you." So, I had two weeks to cash out ALL of our retirement funds (including Howard's, which really sucked because we had to take the 10% penalty on his) and spend the money in legal shelters. I have a brand-new car now! We were able to get a fantastic deal on a lease for a new 2004 Mazda 6. I paid it for four years, so that should give us time to get our lives back on track. The rest of the balance went straight into our mortgage. So, we're living without a safety net - however, I'm getting kind of used to that these days! I had to fill out the application all over again and re-submit prior to November 1. About a week later I got a letter querying several different things on my application. I got all of the forms I needed to signed and re-submitted everything again last week. I'm hoping that it will finally go through.

In the meantime, we have no health insurance - which is really a pain in the butt. Once Medicaid does pick us up again, they should cover all of the bills I'm incurring now (like $11,000 for a short-chemo day). I can still get chemo. However, I have to set up the appointments separately and go to the outpatient clinic at the hospital. I call it "Club Chemo" because it's a really posh setup compared to the doctor's clinic. The downside is that it takes about 3 times longer to get chemo there than it does in the doctor's office. So, there's no such thing as a "quick" day anymore. I go for what would normally be my "long day" on Thursday (about 3 hours). I'm hoping to make it out of there in less than 6 hours, but I'm not holding my breath.

Howard's doing great in school. He gets frustrated because he's a perfectionist and he doesn't have time to make his projects perfect. So far he's made a coke can, a bracket, and a utility cart. His current project is a building. It's great to see him working hard on something he enjoys. He's exhausted by the end of the day, but he's certainly learning a lot. We just got a new computer that will run the software he uses (Lightwave 8.0). Hopefully, that will alleviate a bit of his stress because he'll now be able to practice techniques at home.

Allie's doing awesome in school. She's been blessed with phenomenal teachers. She's starting to read and works really hard at her schoolwork. It's been fun watching her take off in her progress. More importantly, she's happy. She loves school and has made a bunch of friends. Last weekend she got to go to her first birthday parties without Mom & Dad. Friday night she was invited to a sleepover - we let her go to the party, but weren't ready for her to stay over. Although she says she really wanted to stay-over, she seemed very ready to come home by the time Howard picked her up. Saturday she had a second party that took place at the Club where she has her gymnastics.

Rachael is my little buddy; she goes everywhere with me. She tells me that she loves being home with me and that she's not going back to school until she's Allie's age and I make her! She's a little comedian and loves to make people laugh. She has an incredible sense of humor and keeps me smiling. We started Rachael in gymnastics as well. I didn't think she'd do well because she's my little bull in a china shop. Boy, did she prove me wrong! She's has no fear (which is really scary for me). She's now doing flips on the bar, jumping off the high bar into a foam pit, doing back bridges, and literally climbing my walls into head/handstands. She naturally has the upper-body strength that Allie has had to work for. She's constantly doing things that Allie hasn't yet mastered, which really makes her big sister jealous.

As for me, I'm amazed how busy I've become. I have a gazillion things on my "to do" list that are still a ways from being tackled. The house is starting to get organized, although I'm not there yet. In the last few months Howard was in charge of things, he was much too busy taking care of me and the kids to make the menial things around here a priority. As such, it's taking quite a while to catch up. I'm enjoying my time with Rachael more than I ever thought I would. The days are just flying by. I can't believe we're coming up on the end of the year already.

On the flipside, it's amazing to think I'm doing what I'm doing now given where I was one year ago. This time last year I was still working and thought everything was fine. It was in December that my back started aching and not until January until our world truly got flipped upside down. To be sitting here writing this cancer-free (at least as far as I know) is truly remarkable.

We'll be heading down to my brother's next weekend to do the family Thanksgiving (the weekend before the actual date). I'm looking forward to seeing my Mom as well as my brother - it's been a while. Also, for those of you who've I've not spoken with in the past month, my Mom had a pacemaker put in last month and I've not been able to see her since it happened. She's doing terrific and feels she's about 90% back to normal. On Thanksgiving itself I'm flying up to Boston to go to see my cousin's kids get Bar Mitvah'd. It will be the first time I've seen most of my extended family since right after the surgery (when I went up there for a second opinion). I'm looking forward to catching up with everyone. I'll be back that Sunday. Howard's nervous about letting me go. He's never been comfortable with me traveling, even when I did it routinely for work before the kids were born. However, since I got sick he's even more protective. I haven't stopped to remind him that he'll be way too busy handling both the girls to worry much about me!

I've made absolutely no progress at all on the book I'm planning to write. I still have it on the back burner, but have been too busy with housework and spending time with Rachael to make it a priority. My best guess is that I probably won't do much with it until after the first of the year.

I think that's about it for now. Thank you all for your follow-up e-mails asking if I've fallen off the face of the earth (though you've been much more gracious than to actually put it in those terms). I assure you, I am alive and quite well. I've just been getting on with the business of living.

Love,

Deb