Fargo Family Update

Hi Everyone,

Another good chemo day today. Today was my week #2 treatment - the easy week. Just 5-FU and Leukovorin.

All-in-all I'm doing pretty well. I still have thrush. I've been treated for it four times already since I've been released from the hospital. Today's treatment makes #5. The nurses and PA think that it's the thrush that's causing the decrease in appetite and nausea. We're going after the thrush more aggressively this time - higher dosage antibiotic and for 14 days (not 5-7). I should know in several days if the treatment is working AND if it's the thrush that's been affecting my appetite.

Hopefully once I start eating more I'll have a bit more energy. The big thing I've noticed that's not the "usual me" is that I've been really anti-social. I haven't wanted to talk on the phone, I've been overwhelmed by even the thought of thank you notes, and I haven't really even wanted to write my notes for this site. I don't feel "depressed". I think I'm just tired. What little energy I have had has been "earmarked" for morning exercise, eating, walking, Qigong, or some appointment. My friend, Jenny, from work came by this weekend for a couple of hours. I was thrilled to see her. It was wonderful to have some "outside" diversion. So, I guess I haven't hit a totally anti-social point yet.

Tomorrow morning I get the port installed. I'm looking forward to not having to cover up my arm with a bag and tape every time I want to shower. The PICC line has been much better than no line at all, but otherwise a real pain-in-the-butt. I'll be happy to be rid of it. The port goes under the skin, on my chest, to the side of one of my shoulders - I won't find out until it's installed which side the surgeon has chosen. The doctor doing the port installation is the one who removed half of my colon. He's pretty amazing and I trust him implicitly. I have no doubt tomorrow will be a simple thing for him. The procedure itself only takes 15-20 minutes. However, I'll still be glad when it's history.

On a positive note, the strength training and Qigong have definitely made a difference. In spite of all of the weight I've lost, I definitely have muscle tone - I see it especially in my legs. Also, I've been able to take some nice, clean, deep breaths - that's huge because the latest CAT Scan showed fluid in my right lung. That fluid has to be gone for me to get such a clean breath.

I'll check in post port installation as soon as I'm able.

Love,

Deb

I had the port installed yesterday. All went well. I'm very sore, but I think I'll recover quickly. Looking forward to making it through the next couple of days so that the initial "intense" pain goes away and I can use my arm again.

It looks like the theory on thrush has some validity. I've been hungry the last couple of days. In fact, if my appetite has returned the way it seems, I may have to start planning out my meals the old-fashioned low-fat way. For now, I'm eating all I want and taking advantage of the situation. I'll know when I get chemo on Wednesday how much of an effect it has on my eating habits. Tonight I had dinner with the family - Allie was very happy Mom got to join everyone at the table. I got an official "yea!"

One of the resources someone referred me to was a site called www.kidscope.org. It had a "comic book" I was able to download for Allie called "Kemo Shark." It's a terrific little story that explains to kids how chemotherapy helps, what side-effects are, and some of the things that are going on in "Mom's body" while she's fighting cancer. Last night Allie held up the story to my Mom and said, "Granny, this is a VERY important book." Mom said, "I know you like the story, but what makes it so important?" Allie replied, "It's important because it tells me all about what's going on in Mom's body right now and I need to know." I was so proud of her for being able to express herself so clearly. She really is understanding an awful lot of what's been happening.

Thanks to the generosity of Granny, we signed Rachael up for pre-school today. She'll be 3 next week on the 13th. We'll start her on the 22nd. She can't wait to go.

My Mom and I were looking at the calendar today. I was astounded to realize that I'm only six weeks out of surgery. I've felt a tremendous increase in energy this week. I feel like I'm really starting to come into my own and that it's just a matter of time until I can start taking my own life back again. Aside from the cancer, the doctors said I would need to be out of work for 6-8 weeks just from the hysterectomy and colectomy. So, I think I'm really doing quite well. At this point my main goal is to get my energy levels high enough that I can go back to work, at least on a part-time basis. I also need to know what part of the month my white cells are going to drop (and for how long) so that I can plan accordingly.

I tried "scheduling out" my nap times today so that I was a bit more on-target with the kids. I thought I was doing well throughout the day, but it caught up with me tonight. I'm not quite ready to give up on all of my extra sleep. I think I've still got some more healing to do before I'm there.

Overall, I feel good and I think I'm making great progress. I'm hoping to have a great week going into next Wednesday - that's my next big dose of chemo.

I'm hoping to make some progress this weekend on some things for myself - including thank you notes. I thank you so much for your patience - I'm SO sorry I've been so negligent. I'll let you know in my next check-in how much I was able to accomplish!

Hope you all have a wonderful weekend.

Love,

Deb

I don't have a whole lot to report at this point in time. Everything seems to be progressing well. I'm starting to see an increase in energy. In general, I have my appetite back. Mornings are still a bit of a toss-up, but I'm able to get enough food in throughout the rest of the day that it's no longer a problem.

I'm also starting to get myself into a daily routine, which has helped. And, I can shower on my own! It's one of those things you don't think much about unless you are unable to do it. No more covering body parts with plastic bags and tape. The spot where the port was installed is still quite sore, but I'm getting there. I can raise my arm up to wash my hair and it's starting to become functional again. I'm right-handed, so I'll be thrilled when it's fully functional again.

I feel strong heading into tomorrow - treatment #3. This is one of the weeks where I get everything; I then have next week totally off. I feel like I've done everything possible that I can to allow my body to maximize the effectiveness of the chemo. I'm drinking Essiac tea four times a day, I've added nutritional and herbal supplements to my diet, I'm exercising regularly, drinking lots of water, and getting plenty of sleep. I have to admit, it's a lot easier to live a healthy lifestyle when you have a terrific support team at your beck and call. I've been very privileged to be able to be self-centered as Howard & Mom have picked up all of the slack around me and allowed me to do nothing but focus on getting well. It's made a huge difference in my recovery.

Allie & Rachael seem to be doing well and the rest of us are, too.

I head into chemo tomorrow at 10:00. I'm hoping it will be as uneventful as week #1. I'll let you know how it went as soon as I'm able.

Love,

Deb

P.S. Happy Birthday, Ken! Hope it's a good one.

Week #3 of Chemo went well. I was tired when I was done. But that was about the worst of it. I came home and slept a lot.

We had a wonderful family-oriented weekend. Rachael turned three on Saturday. I was feeling well enough that we all went out to breakfast together for the first time in about a month. I love going to breakfast with my kids. I think it's just because we all enjoy eating so darn much - especially Rachael. Since I've been sick and my appetite's diminished I haven't had the same social outlet with them. It's something I've missed. At any rate, breakfast was fun.

We stopped at the library on the way home and picked up some much needed new books. Each of the girls gets to pick out two books per night to read at storytime. I generally take out 20 books - which sounds like a lot until you realize it's only 5 days and then the same stories over and over again for the remainder of the three weeks. The kids haven't had library books since December. We've exhausted every book in their personal library multiple times over. It was probably a good thing - they were so used to reading library books, I don't think either of my kids realized just how many books they owned. However, I have to admit, it's wonderful to have some new stories to read.

Everyone woke up from naptime around 3:30 Saturday afternoon. Some friends of ours had sent gift cards for Rachael's birthday, including one that allowed us to take the girls out to eat at Chili's. So, I got to eat out for the second time in one day. The staff did their little birthday clapping song after the meal and Rachael got to enjoy a chocolate lava cake (her favorite), which she gladly shared with everyone. I've attached a couple of pictures so you can see for yourself just how excited she was.

On Sunday I woke up with a cold. Howard totally freaked out, but ultimately it wasn't a bad thing because he went far enough off the deep end that it kind of forced him to come back to a more central (and in my estimation, more reasonable) point of view. Howard's Mom flew in Sunday afternoon. We brought in chinese food for everyone, opened presents, and had ice cream cake. Rachael's favorite present was a guitar that my Mom got for her. She hasn't put it down since she opened it. She must have really been wanting one because she guessed what it was when she looked at the gift-wrapped package. I was pretty out of it most of Sunday and spent the better part of the day sleeping. I was also plagued by nausea all day, which didn't help matters any. With both grandmas here, I don't think Rachael noticed my absence too much and she seemed to have a wonderful time. If you ask her how old she is, she'll hold up three fingers and count "1-2-3," but you can tell she really has no concept of what it means.

Monday I gave in to spousal pressure and called the doctor's office to tell them I had a cold. Turns out Howard was right - they did care. They put me on antibiotics just to make sure nothing settles in to stay. I felt much better than I was afraid I might. My Mom escaped while she could (she also woke up with a cold on Sunday and wasn't feeling her best) and headed back to her own home. My girls were thrilled to see their Mimi (Howard's Mom) and are thoroughly enjoying her company.

Today was a grey, rainy day. I've finally started dealing with some of the piles of mail that have accumulated around here and I started getting really down as I opened one medical bill after another. The one that really got me was the notice I received from my insurance company that they wouldn't cover the second opinion I got up at Dana Farber. I thought I had all of the insurance worked out before I ever got a plane ticket - turns out I didn't. Dana Farber "accepts" my insurance company's insurance, but they are considered an "out of network provider". When I asked the insurance company if the second opinion would be covered, I was told "yes" - which was only partially true. It was "yes" after a $1,000 out-of-pocket deductible was met, so we are responsible for the $750.00 bill. Of course, all of these checks were verbal and I have nothing in writing. And, I'm sure I'll be able to negotiate it down some, but that's not the point. I was feeling pretty bummed out and overwhelmed by it all. I generally have perspective, but this morning it was lost. I became aware that I was stressing out over materialistic things and that I needed to get a grip. I took a moment and prayed for a sign that we would eventually be able to handle things financially and for something that would allow me to regain my focus on what was truly important in this fight. Not fifteen minutes later Howard came home with the mail. In there was an envelope from our bank, containing a list of all of the donations people had sent in for us. Howard's cousin is a nun -- one of the contributions was of considerable size and had been sent by a foundation of her parrish. I'm used to my prayers being answered. I'm just not used to them being answered so quickly or blatently. I took a good nap and when I woke up the world was back in perspective. I have my husband, my girls, a roof over my head, food on the table, and a whole lot of generous people in our lives, some of whom we've never even met, that are enabling us to keep that roof and food there.

I hope you enjoy the photos.

This is week #4, so I don't have chemo tomorrow. Happy St. Patty's Day to all.

Love,

Deb

Well, you guy have told me to be honest, so here goes… I've had a couple of the roughest days of my life. The good news is that I don't think I need my pain meds any more. The bad news is that withdrawal sucks. I've been cold and hot and sweaty and miserable for two days straight. And depressed. I've cried more in the last 12 hours than in the entire last year of my life. The last time I felt this miserable was when I experienced post-partum depression after I had Allie.

Sunday night I changed my pain patch. They generally last for 2 days although technically I think they're supposed to last for 3. Wednesday afternoon I started getting very sweaty. By Wednesday night I was very uncomfortable and even Howard noticed how badly I was sweating. Also, my hands and feet were freezing. I thought it might be side-effects from the chemo, but that seemed odd because it had been a full week since I'd gone for treatment - this is my off week. Yesterday I just was in a funk all day. I was able to pretend I was OK, but I really wasn't feeling well. Then, last night it hit me - I hadn't been that temperature-crazy and sweaty since I got off of the morphine. I thought about it and realized I hadn't changed my pain patch since Sunday night. In general, I always knew when it was time to change it because I'd start to feel pain. This time I didn't - so it never got changed. So, that's great news. I seem to be healing very well. The only pain I have right now is minor discomfort where they installed my port, but it's not a big deal.

I'm not used to being depressed. I'm not naturally a depressed person. I just don't know how to handle it. I just want to crawl into bed and stay there. Actually, I gave into that for quite a while today and did spend a bunch of hours in the middle of the day sleeping. I figure if I'm sleeping I don't have to deal with anything. Eventually my brain kicked in and I did get out of bed. I got myself together and took a long walk. When I got home everyone was home, so I got to cuddle-up with Rachael. It helped a little bit, but not a whole lot.

According to Howard, withdrawal can last 3-4 days. I was hoping today that I'd be fine, but it was way worse than yesterday. I don't think I could take a tomorrow that was that much worse than today. Hopefully, this is the worst of it.

Love,

Deb

All I can say for this weekend, is that I survived and I'm still kicking. The past few days are amongst those I'd like to quickly forget. Friday was a total depression that floated over to Saturday. Today I feel a little better.

Luckily, we had company this weekend. Some of Howard's cousins came up from the Jupiter area to visit. The girls adore them and a good time was had by all - even me in spite of myself. I was achy and nauseated all weekend. Not sure how much is due to coming of the narcotics and how much is due to other factors. I did call the doctor today and I have an appointment to see him tomorrow. I'm hoping I've stayed hydrated enough that I won't need more IV fluids. I'm also hoping the doctor will give me something to stimulate my appetite so that I can get more nutrition into me.

I never did give in and put the pain patch back on - although I was very tempted at several spots in the withdrawal process. The only thing that kept me from it was the thought that I'd gone through Friday for nothing and that I'd have to break the addiction at some point down the line, even if it was off of something like methodone. I still think having narcotics in my body over such a long period of time can't be a good thing. And that the sooner I'm off, the better.

I kept myself up a good part of today and put my kids to bed tonight, which made me feel good. It breaks my heart that they miss me so much. I spend so much time in bed sleeping I feel like I'm missing out on them.

Rachael starts pre-school tomorrow. She's very excited. I'm happy for Howard because I think that 4 hours will be a much-needed break for him. In spite of having help here, he's exhausted from taking care of all of us.

I think that's about it for now.

Love,

Deb

I got to the doctor's office today. I'm back on the pain patch. After all that! He said withdrawal symptoms would probably keep me miserable for at least another week, possibly longer. But if I got on the lower dose of the pain patch we'll be able to tell what symptoms are due to withdrawal and what symptoms are due to other issues. And, he thinks I can be narcotic-free within 1-2 weeks - a time frame I can live with.

One of my big problems is that I've been unable to eat much of anything since last Thursday. So, of course, my energy is down. And, who would have ever thought in a million years I'd be worried about my weight being too low??? That still boggles my mind! But, alas, I now have to try to keep the pounds I have. I'm down to 120 pounds fully dressed with blue jeans and sneakers on. I've not seen that on the scale since I was a junior in high school! My thrush is back due to the antibiotics I was on last week. They gave me IV meds today to combat it and I have more of an appetite tonight than I have in almost a week.

I had two bits of good news at the doctor's office today. I'm cleared to start driving again. That's a big one for me because I've felt like a dependent invalid not being able to even run to the store for myself. My other good news is that in spite of having felt horrible, my bloodwork came back great. All of my levels on everything are heading in the right direction. That makes me feel like everything I'm doing on my "wellness program" (as I seem to be calling my routine of eating, supplements and exercise) is working.

I feel much better tonight than I did when I woke up this a.m. I do have to go for a chest x-ray tomorrow to check the fluid on my right lung. I've been having problems taking a deep breath and they're analyzing whether or not to drain the fluid. They also want to make absolutely sure that there's not any type of infection in there. I'll know the results when I go for chemo on Wednesday.

My appointment with my boss got rescheduled for the afternoon. I'll see how I feel when I wake up in the morning. If I'm not feeling sharp, I may try to reschedule to give the patch a day or two to kick back in. In theory, I should be feeling MUCH better by 7:00 a.m. tomorrow morning.

My girls were thrilled to see me when we got home tonight. We left for the doctor's appt while they were napping and they knew we'd be gone when they woke up. However, it freaked them out that we were gone so long and Rachael, in particular, is very afraid that I'm going to "disappear" into the hospital again. I felt good enough tonight that I rocked her in the rocking chair before she went to sleep tonight (something her Dad started with her when all of this upheaval started). I think it was a healing and comforting thing for both of us - I know I could have held her for hours if she didn't have to go to sleep.

Today was Rachael's first day at preschool. She loved it. Her teacher told Howard that she fit right into everything as if she'd been there forever. That really didn't surprise me. What surprised me was that when I tucked Allie into bed tonight she told me that the highlight of her day was having Rachael go to school with her. I was so afraid that Allie would be jealous of Rachael moving in on her thing. Turns out, she's thrilled. Allie's old pre-school teacher told us that we'll be able to gauge Rachael's' reaction towards school when we drop her off on Wednesday. She said it generally takes 2-3 days before the reality of the everyday schedule sets in and the novelty wears off. I really don't think it will for her, though. I think she was totally ready for the group interaction. I guess time will tell. I can't believe my baby's in school already. I'm grateful to my Mom for sending her for us - I think it will be a good thing for everyone, especially Rachael and Howard.

Well, I'd better get to sleep. I have an early day tomorrow. Even though I just have to get up to go for a stupid x-ray, I think I'm actually looking forward to having something I have to do. I've missed the routine of work in a major way. I'm also hoping I'll be able to start getting out of the house more and more. I think that will help my frame of mind. Although, if I'm able to work things out with my employers and they're willing to let me work part-time, that may be all the "out of house interaction" I can handle at this time. Like everything else in my life right now, I guess time will tell.

I'm still terribly behind on thank you notes - my lag is now more than a month back. However, please know that we are most appreciative of everything so many of you have done to help us out.

Thank you, again for all of your prayers. Keep them up! I appreciate all of the cards and well-wishes that have been sent my way. I know that with your help I can beat this.

Love,

Deb

I'm taking a deep breath... all of the Moms have gone home and we're finally on our own. It's going to be great to have the house back to ourselves, but it's also a bit scary. I think I'm well enough now that it'll be OK. I'm definitely ready for us to develop a new sense of "normal", whatever that may be.

I'm trying to figure out where I left off last. On Wednesday I got clearance to start driving again!!! That makes me VERY happy. I also have clearance to start working on a part-time basis. I met with Sally and John but didn't get all that far. They let me know they were willing to take me back on a part-time basis in a position of lower responsibility with lower pay. How low they haven't told me. It's definitely not what I was hoping for. However, I'm trying to stay positive. I'm totally unprotected by FMLA because they have less than 50 employees, so technically they don't have to offer me anything at all. It is my hope that once I get in there and they can see for themselves that I'm capable of working reliable hours without keeling over they'll be more willing to allow me to take on some of my old responsibilities. Either way I probably won't start back until the week of April 12th.

I had the best day today that I've had since I got sick!!! I had kind of a lazy morning this a.m., with the girls crawling all over me in bed. My mother-in-law made some wonderful french toast for breakfast and I very much enjoyed the last "home-cooked" meal I'll probably have for a while. After breakfast we spontaneously decided to go to the beach. It's been a long time since we've gone (Howard HATES the sand) and it was the first time the girls were really old enough to play in the sand and appreciate the water and the waves. The beach was a bit crowded, but not too bad. The weather couldn't have been any more perfect. After a couple of hours of sun, my mother-in-law took us all out for lunch. I actually had an appetite and enjoyed eating out. Just being out and about was awesome.

Tomorrow morning we have an appointment with a state case worker about possibly getting food stamps. I also have to follow-up with another social worker who's name that I have to find out about filing for disability. We're still in research mode of finding out what our options are. Howard's been looking into some government contracts for artwork - it's something he can do right now to bring in money, without any additional training. He and I still both think that if we can keep him out of the 9-5 routine so that he's free to take care of the girls in the afternoon and me whenever necessary, we'll ultimately be best off. On the flipside, if he could find something with good benefits, it might be worth making the necessary sacrifices. As I said, we're still in research mode.

I'm off to shower and sleep. I'll try to catch up more in the next few days.

:) Deb