- PRAYER MATTERS! My first request to anyone who asks, "What can I do for you?" is PRAY! Please pray for my family and me every single day as frequently as you are able. We seek the strength to get through this cancer-war with my body and mind intact and the family fabric whole. I believe every single prayer matters. When you pray you send healing energy; I know I cannot win this war without your help.
- my friends and relatives are really as incredible as I had believed them to be;
- I have friends who care that I didn't even know about;
- many people who you meet everyday are afraid to say the word "cancer";
- people tell you to remain positive; but negative folks are threatened by positive people;
- my "job" throughout this fight is two-fold - first, and most importantly, it's to take care of myself so that I can win the war and secondly, it's to document my experience. At this moment I have no idea why documentation is important - I just have an odd feeling that it is.
This entry will include the thoughts I care to share on all things that have happened up to this point.
As bizarre as it seems, this whole chaotic event started less than a month ago. I went to the doctor with a sore back. He prescribed narcotics (so that I could sleep at night) which we believed to have caused intestinal problems. My Gastrointerologist performed a CAT-Scan on 1/16 expecting to find a bowel obstruction. Instead, he found a large mass on my ovary. This doctor was VERY careful not to use the word "Cancer" he merely recommended I see a couple of OB/Oncologists because they were "abdominal" experts. This was the first time I became aware that a tumor of any type was a possibility. I called the doctor on Sunday because the pain had increased and he advised me to check-in to Florida hospital because of the specialists who practice there.
Prior to admitting me, the hospital ran LOTS of tests - ultrasounds, x-rays, bloodwork, and a whole host of other unknowns. The ER doctor informed me that the mass appeared to be cancerous (the first time I heard the word) and oh, by the way, things didn't look too good. It also doesn't take a brain surgeon to know that when someone can't look you directly in the eye, they're thinking pretty horrible stuff.
On Monday at 5:15 a.m. I met the OB/Oncologist I had been told I needed to see. He looked like Richard Dreyfuss and was very upbeat. Everyone at the hospital ranted and raved about how great he was, so I decided I was in good hands. He let me know that I had a very large mass, which was bad news, that it would kill me if he didn't get it out, and so therefore he planned to remove it. It's hard to argue with logic like that! He also let me know that surgery would probably happen on Wednesday.
According to the journals my brother wrote, I was apparantly pretty doped-up on Tuesday. I'll take his word for it as I don't remember. However, I do remember being waited-on like a princess. It made me wish I had an appetite to take advantage of all the things people were willing to run and get for me! The other thing I remember about Tuesday is that it provided an opportunity for me to tell those closest to me what was going on. One the hardest things I've ever had to do was to call one of my best friends who I hadn't spoken with in a couple of months and say, "Are you sitting down? I'm about to slap you up-side the head... I'm in the hospital, they think I have ovarian cancer, and I'm having a hysterectomy tomorrow." Her response after a huge sob and "Oh, my god!"? "Do you need me to get on a plane tonight so I can be there with you tomorrow?" This is a woman who has two small children, a job, and a full life of her own... and yet I have absolutely no reservation that if I had said "yes" I'd have seen her face before they wheeled me off for the operation. As I mentioned earlier, I have no doubt about how amazing certain individuals within my life really are. And, on the flipside, I know now that my "true" friends are the ones for whom it was genuinely heart-breaking to share the cancer news - because I KNEW without a doubt how devastating it would be to them.
The surgery itself was pretty freaky. I was originally scheduled for late afternoon, but got moved-up on the schedule at the last minute. The result of this is that my family wasn't there so early which meant I had a bunch of time on my own to reflect about things in the pre-op room. I was aware of the presence of the spirit of my husband's grandmother who had recently passed. She held my hand and kept me from panicking. A great sense of serenity came over me. I knew that the mass would be cancerous, that things were worse than anyone had predicted to that point, that I was (quite literally) in for the fight of my life, but that everything would ultimately be OK. Finally it was my turn and the waiting was over. I remember saying a prayer for the surgeon and letting the anesthesiologist know it didn't take much to knock me out but to please make sure I stayed fully out throughout the procedure!
The next thing I knew my husband was standing next to me with tears in his eyes, holding my hand, and telling me that things didn't go as well as had been hoped. He said that I'd had a total hysterectomy but that the cancer had spread to the colon and they'd had to call in a second surgeon to remove ˝ of the colon. I was blessed with a very gifted surgeon - he somehow managed to sew what was left of the colon back together so that I don't even need a colostomy bag.
The remaining week and a half in the hospital was about getting my pain managed. It also surved as an "appropriate" amount of transition time for my family and me to assimilate the information that had been thrown at us and to mentally prepare for the battles that were now impending. It was very interesting to see how others reacted to the news.
I got out of the hospital yesterday. The hospital itself was a very surrealistic experience. As almost every Mom in America can probably relate, it was nice (in an odd sort of way) to be waited-on for a short while. I pressed a button; they came. However, as you can imagine, this type of service definitely loses its appeal after the first 24 hours or so.
When I got home from the hospital, my girls were still napping, so the house was quiet. I took advantage of the momentary peace and napped, too. My Aunt & Uncle had come in to visit with me and so once the girls and I woke up they came to the house. I spent the afternoon watching the kids (and the old folks) sing and dance and jump around like maniacs. Nothing could be so good for the soul!
I over-did it a bit on Saturday, so I was pretty tired on Sunday. The day mostly consisted of resting. The other thing I was determined to do was start this journal. I also called and spoke with my cousin who is a Director at the Dana Farber Breast Cancer Clinic. I consulted with him regarding what he thought was important in regards to a second opinion. He offered to help in any way he can, which is pretty uplifting given the fact I really don't know him very well and haven't spoken with him in years. I will be following up with him within the next day or two re: a referral.
I think that's about it for now. The length of my journal entries will definitely be hampered somewhat by the amount of energy I have. Which, is probably a good thing for those reading as I tend to be extremely loquatious.
Thank you all for your thoughts and prayers. Please keep praying for me - you're doing a great job and I know I can't make it without you.
Love,
Deb
Well, the last couple of days have been hectic... shades of things to come, I'm sure. We've been making calls to doctors to set up appointments; I've been trying to walk and to keep up my nutritional intake.
The day started out a bit rough. Very high pain levels today. I'm very thankful for the medication - it doesn't always do "the job", but it does take the edge off. I went for a blood test to make sure my red blood cells are replenishing to ensure I didn't need another transfusion. Didn't hear anything back from the doctor this afternoon, so we're assuming it's good news and that all is well.
After my blood-draw we walked across the street to visit with the people whom I currently work. I could tell most were truly happy to see me and apparently I look good for all I've been through. I'm pretty happy with my weight right now - I'm down to a svelt 131 lbs. Who needed a year of Weight Watchers? There went that last 10 lbs. I couldn't lose along with the couple of extra holiday lbs. I'm actually in a unique position now I've NEVER faced before - I need to try to gain weight before I hit chemo. I only wish I had more of an appetite to take advantage of it.
Also, we originally were unable to get an appointment in a timely fashion with the Dana Farber clinic where we were hoping to go for a second opinion. My cousin was able to work his magic for us and they suddenly had an appointment open up next Wednesday. My brother, who has been an absolute angel through all of this, is making arrangements for us to fly us to Boston for the appointment. We're going to drive with the girls down to my Mom's house after my local oncology appointment next Monday. We'll leave the kids at my Mom's while we're in Boston. We'll fly back in to West Palm Beach and spend a couple of days with our family down there. It will be the calm before the storm. We're hoping to be able to stay there to celebrate my Uncle's birthday and to see my cousin and her friends who are going to be visiting from Boston area.
By the time we return from Boston we should have an idea of what type of chemo I'll be doing. Also, within the next week or so we'll get more technical information out here about the type of cancer I have and how we're planning to counter-attack.
I've heard from several individuals by both phone and e-mail whom I've not been in touch with in years. In particular, messages from my old Fas-Track family have been heartwarming. Thank you, guys, for keeping me in your prayers. I love you all, too.
I'm too tired to write much more this evening. If you're wondering about things I haven't posted about, feel free to drop me an e-mail and I'll try to address your questions in my next post.
Love,
Deb
Yesterday was a rough day. I woke up in a lot of pain and was generally feeling listless. I called the doctor to find out if what I was feeling was "normal" and to make sure that the blood test came out allright. The nurse I spoke with was anything but professional. She asked if I had lost a lot of blood lately and then proceeded to mention that my "labs [were] all screwed up". She couldn't define "screwed up" for me any better than to say "wacky". She said they couldn't help me with the pain and that she'd been waiting for the doctor to call back since the day before about the bloodwork. Thank god for Howard. I really didn't have the energy for the ensuing "chase the doctor" phone conversations. Howard kept calling different doctors until one of them, my new oncologist, finally said "please bring her in." We went immediately and discovered they have a whole clinic set up in the back of their office – it's where they do a lot of their chemotherapy. They got me set up with an IV and took a bunch of blood. They ran my blood counts immediately, and shared the results with us, which really were fine. I was very dehydrated and grateful they were able to pump me back up with fluids. I also discovered I have thrush - a pretty harmless but very yucky growth that covers my tongue and mouth. They gave me medicine to start clearing that up, too. I finally got released around 3:30, came home and slept. Oh, and the most important part of my diagnosis – my doctor has informed me that I was overdoing it – go figure. He said that whether I want to believe it or not, I am in the process of recovering from major surgery, and just need to slow down a bit and accept the fact. He also doubled my pain patch which will hopefully result in my being able to use less morphine.
Today was a lot better. The common-sense advice got through to me. I spent a lot of today just sleeping and relaxing. This evening several of my closest co-workers brought dinner over for my whole family. We sat around and chit-chatted for couple of hours. It was SO wonderful to socialize with someone outside of my family. They made me laugh and smile. As I keep saying over and over again, I really have terrific human beings in my life and within my support network.
My Mom FINALLY got to go home this a.m. for a couple of kid-free days. She was supposed to take off yesterday morning when I got sick AGAIN, causing her to re-schedule everything. She's been such a trooper – and has definitely become a pro at going with the flow! We'll see her next week. She's going to take care of my girls while we're at the Dana Farber Cancer Insititute for a consultation. We're also going to spend a couple of days at my Mom's house with some extended family. I'll be able to relax there and continue my life as a pampered diva.
I've received several gifts over the last few days that have blown me away that I can't wait to tell everyone about. I received a beautiful crocheted "prayer angel" from someone I don't know so that everytime I see it I can be reminded of how many people are praying for me. My cousin sent me an old digital camera that he had so I'll be able to share more pictures of my kids and the rest of us from time to time. Today I received a beautiful queen-size hand-sewn quilt from a cancer survivor who is the mother of one of our friends. It took her 2 years to make and was obviously put together stitch-by-stitch with lots of love. It blew me away that this person wanted me to have it after creating such an amazing labor of love. Again, a huge reminder of the numerous prayers I have coming my way. There have been too many little thoughtful presents (flowers, pajamas, books, etc.) to even mention. I'm just so blown away by everyone's generosity.
We have a bunch of phone calls we need to make tomorrow, including finding out about elegibility for social security and other local social support programs. It sucks to be in this position, but God's always provided for us before when we've been down to our last penny. I have no reason to think we won't be OK now. Other than the phone calls, tomorrow should be a pretty easy day. The weekend is looking really low-stress too.
Allie's been having a rough time of handling things. Her behavior today was pretty awful. She told me outright that she didn't like me and wasn't going to listen anything I told her to do. After a bunch of tears (her & I both), a long talk, and an 8-minute timeout, I was able to get to the bottom of things. She's hoping that if she can distance herself from me it won't hurt so much should I have to be separated from her in the future. Also, she knows she's staying with Granny when Howard & I go to Boston for the consultation. She's scared to death I'm going to end up in the hospital while I'm up there and that I won't come home. I think a weekend together with lots of hugs, kisses, and reassurance will make a big difference. This isn't easy on any of us, but all-in-all, I really think she's doing OK with it and that days like today are just par for the course.
I'm looking forward to reading the information I now have about the clinical research trial I think I'm going to be participating in. And, I'm looking forward to getting more information next week. My appointment with my local oncologist is the following Monday, at which point I should have things semi-organized. I'm ready at this point to have a plan in place.
I'm still so appreciative of all of the thoughts & prayers from everyone – friends and acquaintances, old and new. Thank you all for your support.
Love,
Deb
Today I acheived more of my perception of "normal" than any thus far. The biggest thing I did today was make it through the WHOLE day without any morphine!!! Yea, me! Doubling the pain patch finally kicked in and this is one of the first visible signs of recovery I've seen. Quite heartening, to say the least. I'll probably still need the morphine to sleep tonight, but progress is progress. I'll take what I'm given!
Very topsy-turvy up-and-down day today, but I found it all much easier to deal with without such a drug-induced fog. I called this morning and found out that we're not eligible for any type of financial support. I'd have to not be able to work for a minimum of one year in order to potentially qualify for disability. So, so much for that avenue of income. I spoke to my old Fas-Track boss yesterday and he's going to float some freelance work my way. I'll be able to do it as I'm able and in my own time, so that's something. We still need to find out if we can qualify short-term for food stamps, but I have a feeling that it's going to be the same thing as social security -- where I need to be down and out on a more permanent basis. I'll make the call Monday morning just to make sure I've not missed anything.
Howard has turned into quite the knight in shining armor, always one step ahead of me. He went to my banker today to find out if there was any way we could open a "Cancer Fund" account for donations... and there is. There were two separate types of accounts - for one we'd need to be a registered non-profit organization. The other is simply a savings account c/o the bank. So, if anyone out there is reading this and cares to help us out, you can either use the Paypal method attached to the Contributions section of this site or you can send a contribution to:
- Southtrust Bank
- Attn: Gina Taylor (Fargo Cancer Fund)
- 2728 Enterprise Road
- Orange City, FL 32763
Howard feels that since I've decided to do this I need to answer the question, "Why doesn't Howard just go get a job?" That answer is complex. First and foremost, it would mean another change in the girls' life, just as everything is already changing. Number two, I need him to take care of me right now. Number three, the money he could make around here would cover daycare costs, but little else - not even the amount necessary to keep the family health insurance coverage. Add to that, he already has a full-time job taking care of the girls and me. I can't even make my own meals or drive a car. So, in summary, the grand answer is that the time he would be away from the home is not time we're willing to risk losing together nor are we willing to risk the emotional fall-out that would ensue from the kids.
OK, I'm done begging now and ready to turn to the more positive part of my day. Allie definitely rebounded today from yesterday. She was snuggly all day and made efforts to spend as much time as she could with me. She's still nervous about our trip to Boston, but I don't think anything will really expel those fears until the event is history. Rachael was also my little snuggle-bunny today. I don't think either of the kids could have been any cuter. They spent lots of time in my bed with me curled up watching various Kiddie shows (I don't know if NOGGIN is a god-send or a curse).
One of the ladies who came to visit last night brought a "coloring book" for the girls that only required water to "paint". Rachael spent all morning playing with these pages and both of them spent a fair amount of time this afternoon painting away. It was fun to see them have fun.
My brother is coming up to visit with us this weekend. I'm looking forward to spending some time with him. Last he was here I wasn't too aware of what was going on around me. This should be a much more enjoyable time. Also, I love watching my brother with my kids. Few people in life are as unnatural with kids as my brother; however, they have come to adore him. I love watching them interact with each other... it brings me true joy.
Howard and I have been discussing wigs today. I'm going to get my hair cut to my shoulders next week, at least on a short-term basis. If it looks like I'm going to lose my hair in patches once the chemo starts I'll probably have to do an ugly pixie style of some sort. I've decided to get a wig with a hairstyle and color that I like - vs. what I have naturally! I've always been so conservative (excepting that one awful dye job my senior year in high school). If I have to get a wig I might as well make it fun. I don't want anything punk or too ridiculous -- just something different for a change. The one thing I swear is that I won't get a headwrap that makes me look like just another Floridian cancer patient!
I think that's about it for today. Look for kids stories coming off of this weekend - it's when they always seem to shine. And, as always, thank you for your continued prayers. So long as God is with me, this is all just one big speed bump in the cul de sac of life.
Love,
Deb
All weekend I've been looking forward to writing this post! What a wonderful weekend.
Friday night I was able to cut my morphine down from 2 pills to 1 pill per dose. My last morphine pill was at 3:30 a.m. Saturday morning! This was a morphine-free weekend!!! Last night was my first morphine-free night since the surgery. Except for my husband's elbow landing on my head periodically throughout the night, I had a great night's sleep.
Saturday morning Allie decided that Mommy HAD to have breakfast in bed. She was on her best behavior, practicing her best manners - so much so that she actually got her Dad to get out of bed around 7:30 a.m. to watch her pour cereal into a bowl and to pour some milk into it for me. They served me breakfast in bed. The cereal itself couldn't have hit the spot any less (I still shudder to think). However, Howard's decided the way to get me to eat is to have my kids serve me food so that I can't refuse to eat it! He knew I was having trouble choking it down and brought me some apple slices that I was able to ingest.
After breakfast I took a nice, long, luxurious shower with [almost] no interruptions. I took my time putting myself together and just kind of took it easy. Howard took the girls out to get some more "paint books" at the toy store and I took a nice nap. After they got home, Allie came in and napped with me. Howard & Rachael went off and napped, too. I woke up before Allie did and when I did I found out I was hungry! I made myself a peanut butter & jelly sandwich and ate the whole thing. Shortly thereafter my brother got here. We just hung out until everyone else arose.
Saturday afternoon I was able to suck everyone else into my low-energy fog. We all curled up on the couch and watched Ice Age for the one-millionth time. The girls took turns snuggling with my brother and with me. Howard got some adorable pictures, but they're on my Mom's digital camera and I don't know how to upload them! If I figure it out, I'll post them; but those of you who know me well know you probably shouldn't hold your breath waiting to see them. Howard went out grocery shopping while the girls, Andy & I watched the movie. When the movie ended, I got dressed and the four of us went for a walk in my cul de sac. I made it around twice! The girls were upset I wouldn't stay out longer, but I was proud of the progress I'd made. Shortly after we got into the house Howard came home. He and Andy kept everything going while I took a powernap. The next thing I knew Howard was waking me up because the girls had already eaten, bathed, and it was storytime. They were being so sweet they even got an extra book! Evenings have been much better for me than any other time of day. As I woke up I realized I was really feeling great. We put Rachael to bed. When it was Allie's turn she sucked up to me and asked if she could watch "the letter show" (Wheel of Fortune). I love that she's learning her letters and that she can follow the logic of a show like that, so with Howard's consent, she and I "stayed up" and snuggled together until Wheel of Fortune was over (she may not yet be able to play the game, but she plays her mother like an old pro). Howard got our dinner totally prepared while Allie & I were doing this and after I put her to bed Andy, Howard & I had a very nice meal as I sat on the couch with my legs propped up, all nice & comfy. Again, I felt my appetite was pretty good and I ate a fair amount. My "work" for last night was reading from one of my Cancer Survivor books. I was able to comprehend quite a bit and think I should be through that resource within a day or two. I'm feeling really good about things. This book, in particular, talks about the key beliefs and actions of cancer survivors. The great news is that I already have MOST of the prevailing beliefs without having to adjust my thinking. Where I need most of my education is in specifics - smart food choices, what questions to ask and of whom, etc.
As I mentioned/shouted at the top of this posting, last night was the first morphine-free night I'd had. I woke up this morning feel better than I had since before surgery. We all got ready and went out to breakfast together! It had been over a month since I'd been well enough to be able to do this, so I was pretty excited. Breakfast out on the weekend is a sacred ritual for us - we've all missed me not being able to go. Breakfast was a successful first outing. I had a wonderful time being a part of it and watching the kids eat. Rachael, in particular, was starving today. She had all of her own fruit cup, a full grown-up size bowl of oatmeal with her raisins (and mine), half of Howard's grits, a biscuit and I think some of his eggs as well! She was smiling and "mmm-ing" the whole time. As for the food side of breakfast, unfortunately I wasn't able to eat. However, socially-speaking, I'd rate the occasion quite successful.
We came home and I slept. Howard took the girls outside to play - something they LOVE doing, but don't get to do very often due ot the 2:1 child/parent ratio. My brother installed space savers in the girls' closets. Then it was naptime in the Fargo household again. Allie came in to sleep with me. We both tried, but neither of us were able to fall asleep. Allie's excuse is that she "kept hearing things." And, in her defense, here in this part of Florida we have these giant 4' cranes that are wild to look at but make the oddest clicking/shrieking sounds it's nearly impossible to sleep through them! When Allie asked me why I couldn't sleep I said, "my body's hurting today." She asked, "why don't you do your hot/cold treatment on it?" Hot/cold is a supplemental natural healing remedy that we have been performing on my abdomen several times a day for about a week now. It occurred to me that my 4-year-old was entirely correct - I hadn't done it all day. The catch of this? Poor Allie got kicked out of sleeping with me in my bedroom because I then had to do the hot/cold treatments and she got bannished to her own bedroom to take a nap. Geeze, you'd think the kid would have had enough "life's not fair" lessons lately without Mom giving her another one. As I've often said, no good deed goes unpunished! After we made it through the melodrama of getting her to sleep in her own room, I did the hot/cold treatment... and then took a wonderful nap. And, I did let her stay up "extra-late" tonight for snuggle/TV time because she'd been so well-behaved today.
One of the other choices Howard & I have made is to greatly minimize the number of electronic appliances in our bedroom. Howard & Andy moved stuff around in my living room to clear room for an "office space" there. They took the computer and all of the peripherals out of my bedroom and moved them all. My entrance-way still looks decent (although having an office right where you first walk in still wouldn't be my first preference) and I feel great about being able to cross an "action" step off of my "to do" list. Moving all of this stuff around had to be a real pain-in-the-butt. I'm extremely appreciative of the effort it took for them to do this for me. I felt very loved (as I know I am). I now have the hard part of trying to get truly organized. This space is very visible and needs to store all of the stuff I need without looking cluttered. I know it can be done - I just haven't figured out how to do it.
I need to get going so that I can start sorting through all of my old winter clothes to find acceptable outfits for Boston this week. Given my latest weight loss (thanks to Weight Watchers even before the cancer) and the amount of clothes I gave away when we moved south, this may not be an easy task! If necessary, I may have to run to Target tomorrow to just pickup some stretchy pants that I can wear with an old sweater - I do have several of those.
I'm a bit edgy going into this week. I'm NOT looking forward to the driving and flying that will be required of us. I am looking forward to R & R time at my Mom's. I'm not looking into going to Dana Farber and dealing with the realities of a second opinion. I AM looking forward to actually getting the second opinion and being able to come home, meet with my oncologist, and get a finite cancer treatment plan in place. When I have reached that point, which should be about 1-1/2 weeks from now, I should feel a sense of empowerment that I'm currently lacking.
The feedback I'm getting from everyone out there has been amazing. I'm shocked by how many people have let me know that they're enjoying my journal entries. I so look forward to writing them and it kind of amazes me that anyone else is interested in reading them! The fact that you've let me know that you do is heartwarming and incredibly encouraging. The financial support has also been greatly appreciated. To have mentioned it at all in my prior posting was embarassing and somewhat difficult - enough so that I hope not to mention it in any way in future postings, but just had to take a line to say "thank you" and let everyone know how humbled and truly appreciative we are for all you've done for us.
I seem to be healing well, which is a phenomenal start. A healthier me heading into chemo is most likely to bode more positive results faster when we hit that point. You're doing a great job praying - I feel energy around me frequently and KNOW it is due to the thousands of healing prayers that are being sent my way. Please keep up the great work!!!
I'll be in touch for an update as soon as I'm able.
Love,
Deb
Welcome to the rollercoaster ride that is my life. The one question I have for myself is why after all the practice I've had in life, I still fail to recognize the basics physics principle that when a pendulum swings all the way to one side it is naturally going to swing the other way next!
I did enjoy my most wonderful weekend. At some point I overdid it because I needed a morphine pill to control the pain enough to go to sleep last night. However, I was still pretty confident that it was going to be a good week. Hmmm... confident, that's what did me in. I was over-confident.
This morning I got up and was pretty sore and lethargic, but I was still accomplishing things, trying to help Howard get everything together for the Boston/West Palm trip. At lunch, he was making peanut butter & jelly sandwiches for the girls and me and let out a groan because SOMEONE (I choose to remain nameless here) put the jelly back in the fridge nearly empty (remember that sandwich I was so proud of making the other day?)! I felt bad so I went to hand him more. The "storage" jam is on the floor of the pantry. I bent over to reach it and I'm still not sure exactly what I did, but I think I momentarily blacked out, which caused me to lose my balance and go flying across the kitchen floor. The good news is that apparently, somewhat like blacking out in the bathroom in the hospital, I kept my wits about me. I held the jelly up high with one hand (so the glass wouldn't break) and grabbed my stomach with the other hand so I wouldn't split the incision! I landed on my butt and hit the wall with my back. I'm glad there were no security cameras in the house; hmmm, on second thought maybe if there were I'd be going for $100,000 on AHV right now.
I'm fine. I hurt my pride most of all. I'm at the stage where I'm VERY frustrated because I feel I should be able to do so much more than I am. Howard got stuck doing absolutely everything... which was quite a lot. I got my own clothes out in a pile on the bed and I packed my dog's stuff. Other than that, it was ALL his responsibility.
There were a couple of minor things that were forgotten (like feeding the kids dinner), but they survived and anything else forgotten can't be too urgent. We made it to my Mom's which is more than I thought we might accomplish today. Next trip to survive... Boston.
I'm hoping my husband sleeps well tonight. He's extremely stressed and is starting to resemble a grizzly bear. He's mad at me for overdoing it, but I think his back is starting to break from the weight of all of the additional stuff he's picking up. He needs an outlet for his stress, but has been way too tired and out-of-time to pursue any of his traditional reliefs (drawing, going to movies, online chatting). He hates traveling and the idea of traveling with a high-maintenance wife I think is even less appealing at this time. I'll be very glad when this part of the journey is over.
I'm going to get a good night's sleep and try to remember that this is a few days vacation without the kids - how often does that happen? OK, maybe not low enough stress to really call them vacation days, but c'est la vie.
I'll be back in touch after we go to Dana Farber and will let you all know how we fared.
Love,
Deb
We've made it back from Boston! I'll jump ahead to what everyone's waiting to hear... the doctor's report.
According to the consultation in Boston, we're doing everything right! He explained that there are three different types of medications I need to be on in order to maximize the effectiveness of the chemotherapy. The clinical trial at Florida Hospital offers all three. I asked if there were other clinical trials out there that could be more effective and he said there were certainly other trials that had a chance of being as effective, but none that he could say would be MORE effective. So, I think we're in good hands. We go Monday to get further information on the study (When will I start? How often will I have to receive chemo? What are the most common side effects? Can I work?). I'm at least hoping I'll get answers to most of these questions.
On Monday we flew into Providence and my cousin picked us up at the airport. We went back to his house and got to visit with him and his family. When it got late he took us back to my aunt & uncle's house - they are snowbirds down in Florida right now, and had offered us the use of their house as long as we needed it. I spent a lot of time in their house when I was a kid, but it had been years - I was amazed how comfortable I was there now. Slept like a baby.
Our appointment Tuesday got moved up in the afternoon. My cousins came with us so that we'd have someone present to take notes (a tip given to us by my best friend who's husband is a cancer survivor). When we arrived for the appointment Howard realized that he had forgotten the x-rays! My cousin's wife had to drive him all the way back to the house so he could pick them up, and they had to turn around and drive all the way back to Boston. Luckily, they arrived just in the nick of time. The doctor was looking for the x-rays to look them over and only had to wait about 2-3 minutes for them to arrive. The appointment itself went well, as described above.
Other things that the consultation confirmed for me is that this IS colon cancer that spread to the ovaries; not the other way around. The reason it's so important for me to try NOT to lose weight is that it is thought (though not proven) that losing weigh takes away from your body's ability to heal at its maximum rate of effectiveness.
After the appointment we went back to the house and I slept for several hours. Howard, my cousin, and his wife all went out to grab a bite to eat. I was still asleep when they got home! We spent the evening just hanging out.
The next morning my other cousin stopped by to say hello. Howard's Mom & aunt came to take us to the airport. We got there with plenty of time to spare so we had lots of time to visit. I know my being sick has been hard on his Mom because she's geographically so far away. It was wonderful to visit with her in person. The flights home were generally uneventful. We had to switch planes in Atlanta and our first flight landed very late. The ironic thing is that if I had NOT been in a wheelchair we would have missed our connection. However, since I had wheelchair designation, the airport employees made a concerted effort to whisk me across the airport and we boarded the plane at final call. Our seats for the Atlanta/Ft. Lauderdale flight were not able to be assigned until we got to the airport. We ended up at opposite ends of the plane - however my seat was up front, so I was OK with it. I ended up sitting next to a very friendly lady who made for wonderful companionship throughout the flight. My aunt & uncle were at the airport waiting to pick us up as soon as we came through security. It was a long ride home from the airport and I was MUCH relieved to finally get to my Mom's house.
Today was a day of recuperation. I slept most of the morning. This afternoon my Mom took the girls and me to get our hair cut. Mine is now much shorter - just about shoulder length. Allie & Rachael just got theirs trimmed, but it was the first haircut where we had to cut of some of Rachael's baby curls. The hairdresser was kind enough to save a couple of them for me.
Tomorrow will be another easy-going recuperation day... very much needed.
Sunday will be a busy day - hopefully not too busy for me. My cousin's daughter (Jen) and some of her teenage friends are coming to visit (with my aunt & uncle). Jen is someone who I'm very close to, so I can't wait to see her. She usually comes out to visit us for a week over her Winter or Spring break. So, I'm disappointed we won't get her for a whole week this year, but very appreciative that we're going to get to spend time together given all that's going on. Also, it's my uncle's birthday, so we'll have a small party here in the afternoon. Should be fun. I think we're going to head home Sunday evening.
My next update should include further details from my regular oncology appointment about where we go from here and when.
In a couple of my journals I've stated that if you have any questions or anything you'd like to know more about to please let me know. In response to that, someone said, "I would love to know a little more about what your girls "like" (to play with, to do, story topics, etc. Also, what do you find most comfort in when youhave the time and strength? And, what about Howard?"
That's a lot! But, here goes... Allie loves to be the center of attention. Her favorite thing these days is pre-school. She loves to learn... as long as it's not Mommy or Daddy trying to teach her. In her free time, she does a lot of the "typical" little girl stuff. She loves to dress-up. She plays movie star (she and Rachael put on the "Allie & Rachael Show" (a musical variety show) every now and again. She also loves "crafts" of just about any type. Favorite weekend activities include going for walks, using her new Barbie scooter, and drawing with chalk in the driveway.
Rachael's favorite activity is playing with her Little People. She has just about every set out there - from the farm to the carnival. She takes them out almost everyday and is forever pretending with them. If/when Allie is around, she gets in on the fun, too. Rachael's natural inclination is that of a couch potato - we have to work a bit to keep her active. She loves to lay on the couch and watch videos/movies over and over and over again. The other thing both Allie and Rachael love is playing in the "fort" that their Mimi (Howard's Mom) got them for Chanukah.
Luckily, I have been able to pass on my love of books to both kids. We frequently go to the library and every night each kid gets to choose 2 books (for a total of 4) that get read at storytime. I don't think either of them really has a favorite topic. I try to push the alphabet and number books these days, since Allie is just starting to read. Also, animal books are always a hit - in particular, I think they love books about frogs. There are a couple of series that they've loved that have had frogs as the main characters. Rachael's favorite book is "Mommy Doesn't Know My Name," a story about a little girl whose mother calls her by pet names (pumpkin, chickadee, monkey, etc.) instead of by her given name. Allie's favorite book is "Stripes," a story about a little girl who tries so hard to please everyone else that she forgets to be true to herself. Her skin breaks out in whatever others suggest she has/is/or should be until, at long last, the truth sets her free.
What do I find comfort in when I have time and strength? My friends! I've never broken the teenage habit of having a telephone attached to my ear. I'm constantly on the telephone talking to someone. My best friends are all out of state. When I got unlimited long-distance I thought I'd gone to heaven - it seemed too good to be true (and it kind of was, cause I got sick and was then too tired to spend all night on the phone)! My closest friends are in Wisconsin, Connecticut, Minnesota (although she's always on the road everywhere), New York, and Ohio. I can jibber-jabber about everything and nothing for hours and hours and hours. I do enjoy reading, but haven't done much of it since the kids were born - if I get a good book can't put it down. I end up staying up way too late and it totally disrupts my life. I also enjoy reading cookbooks and I have a really cool collection of eccentric ones. I don't cook a whole lot - exception being soup. Soup is my one forte. I think I can cook just about any type of soup imaginable. My latest prior to getting sick was a line of "0-point" soups I created while on Weight Watchers.
As for Howard, his biggest release is going to the movies. We used to go at least once a week before we had the kids. Now he's lucky if he gets there once a month. However, when he gets stressed out or has the opportunity, he'll still go, even if it's on his own. In his spare time Howard also enjoys drawing. He does a lot of sketching and what I call "comic book" type characters. One of the things he was in the process of doing before things got so crazy was getting his drawings together to put up a website to do character sketches on request for gaming enthusiasts. I think that will still happen eventually.
And, I think for Howard and me, one of our biggest releases is just being together as a family on the weekend. The girls are at such fun ages. They just make us laugh and laugh - it's very hard not to smile if they're in good moods and you spend time with them.
As always, thank you for all of your thoughts and prayers.
Love,
DebSorry it's been a few days since I last posted! Thank you to everyone who's checked in to see how I'm doing because you've not heard from me. I'm blown away and quite flattered to have such an audience.
We got back from my Mom's house on Sunday. I was quite ready to be back in my own home and to sleep in my own bed. The trip to Boston really wiped me out, so the last couple of days at my Mom's weren't all that enjoyable. I just wasn't up to par.
Yesterday morning we had an appointment at the onocologist's office. Neither my doctor nor I felt I was making the progress that I should be by now. My main complaint these days is that I'm forever cold and sweaty. On top of being gross, it's just darn uncomfortable. If I take a cup of tea (or something similar) to warm-up, I go into a true hot flash and instead of being clammy, I'm just drenched straight through. The doctor told me I have thrush again (or still, I'm not sure which). He also filled me up on IV fluids before sending me on my way. I really did feel much better by the time I left. The rest of yesterday was pretty miserable. My pain still seems awfully high given the fact I'm a month out of surgery and this sweating thing makes me really irritable (be glad you're at a distance and out of tongue-lashing way as you read this). Apparently the sweating thing also makes me quite hormonal - the only thing I can compare it to is how I felt when I was in labor (it's OK if you want to sit with me quietly - just don't touch me or speak)!
Howard is convinced that the reason I'm sweating so much is because I'm in morphine withdrawal. If I had the energy, the next time he says it AGAIN I'd deck him. The pain patches I'm using are supposed to be changed every 3 days. They generally wear out after two, so then I end up using more morphine. Then, I get off of the morphine and just about the time it should be mostly out of my system, I start using it again. The doctors and nurses at the hospital (including my oncologist) swear that if you take morphine when you're in pain you do NOT get addicted to it and that there is no withdrawal. Howard thinks this is outright crap. My best friend who's husband went through colon cancer last year agrees totally with Howard and said the doctors and nurses up there (Wisconsin) told her that there would be withdrawal symptoms when her husband came off of it - in particular she remembers the horrible sweating. I'm not so sure what I believe - I think anything is possible but am not convinced of any single cause. At any rate, I've got a call into the doctor's office about all of this, in hopes of getting off of the morphine, and we'll see what they have to say. They're supposed to call me back by end of day.
I'm tired of hurting and sick of being sick. Also, I discovered yesterday that if I can't get my healing pace up to what is considered "normal" I could be dismissed from the study. That would be castastrophic. I really believe I need the Avastin (the trial drug) to make it through this. So, pray that my rate of recovery improves QUICKLY.
I started on an exercise routine yesterday. It's pretty sad how much muscle mass you can lose in a single month. However, anything I can do is more than nothing and it's about time I get my body stronger. I think I'll feel better mentally (like I'm more in control) if I can do this regularly because I'll feel like I'm doing something good for me. I'm planning on doing 2 different types of exercise - once in the morning and once in the evening.
The other thing I need to be doing in my "spare time" is writing/sending thank you notes. So, if you're waiting for a note from me, please know that I appreciate all you've done for me, Howard, and the kids, I've just not been able to keep up with everyone's generosity!
I think that's about all the news there is on this end. I'm always hesitant to write these when I'm in a crappy mood because I'm certainly not depressed. I'm still aware how blessed I am to have all I do and I know things can always be worse than they are. So, let's just say, "thank you for listening to me vent" and hopefully my next posting will be a bit more upbeat.
Love,
Deb
Not even sure how to start this post - please up your prayers for me even more. It's been quite a day.
The doctor called this afternoon with the results of the Cat Scan. The cancer has spread and formed a 3" tumor on my liver, is in my lymphnodes, and has shadowed on one of my lungs. The plan for chemo has been moved up - I start on Monday. The good news is that my doctor assures me that I WILL receive the Avastin and that there are no indications at all that this latest development would cause me to be dropped from the study group.
We talked to Allie this afternoon and let her know how sick Mommy is. That was a rough conversation. I'd like to say one I wouldn't care to do again, but I have a feeling I'll be discussing it with her daily. It broke my heart when she came up to me tonight, hugged me, and said, "Mommy, I don't want you to die." All I could say was, "I don't want to die and if I have absolutely any control over it, I won't be going anywhere any time soon." It would be one thing for Howard & I to go through this on our own, but to have my kids dragged through it just seems wrong.
My mind keeps focusing back to when I was in pre-op waiting to have the initial surgery. I know Howard's grandmother's spirit was with me (she passed away last summer). I knew that coming out of the surgery I was going to find out I did have cancer, that it was MUCH worse than anyone had thought. I knew that at some point in my treatment something horrible would happen that would make it seem like I wasn't going to make it, but that in the end I would. So, I'm thinking this is the thing I was forewarned about and that I just need to focus on the last part of the message - that I am going to make it.
It's been an exhausting day, so this one's going to be short. Thank you all for your continued prayers and support. It means so much to know how many people are pulling for me.
Love,
Deb
I FINALLY HAD A GREAT DAY!!!
I have to admit, this is one of the toughest weeks I've ever endured. I think I'm supposed to be stronger for it, but I'm way too close to the situation to see the plus side right now. Of course, I've always held the belief, God gives us crappy days (or weeks, I guess) so that we know how good we have it on a day-to-day basis.
I went to sleep last night in a lot of pain. When Howard came in to check on me, I had him get me a pain pill. When it kicked in, I fell back to sleep and slept so soundly. I couldn't get up this morning. Howard was concerned because I didn't want to move. But it was a nice, lazy, "I'm comfortable" feeling - not an "I'm sick, I can't get up" one. He and the girls went out to McDonald's and came back with breakfast. I got up feeling pretty good. I went to eat and was unable to take a single bite ("oh no, here we go again," I thought). Howard gave me some protein juice instead and it went down well - I was able to drink an entire glass. I think this set the positive pace for the day because it gave me energy.
After breakfast, Howard took Rachael to the store with him and Allie and I got some nice 1-on-1 time. We watched a cooking show together and played some cards. I'm so excited that she's learned her numbers well enough to be able to play real games with me. We played Old Maid, Go Fish, and War. I kicked her butt in all of them (except War, which we quit when we both got bored). I was very proud of the fact she was a very gracious loser and was able to laugh with me.
I just started getting tired and had to lay down for a while when Howard & Rachael came home. They let me sleep for a while and when I got up we ALL went outside. It was an absolutely gorgeous day here. Blue skies, puffy clouds, low 80's, light breeze - just about perfect. Howard brought my rocking chair out into the driveway and I sat and watched the kids color with chalk in the driveway, ride bikes and scooters, and play ball. It doesn't get much better than that! I have an ear-to-ear grin just thinking about it.
We came in and ate lunch. I was able to eat! I even had seconds (hummus and wheat bread). While the kids napped I finally got some thank you notes written. The list is still looking pretty endless. So, if you've given us something and not received a note, please be patient. Know that we appreciate your gift, it's just taking a long time because the list of people who have been SO generous is just that long.
The other thing I was able to accomplish during naptime was my morning exercises, which I had missed. I do strength training in the morning for about 15 minutes. I also do Qigong every night.
Both of the girls were cranky after naptime, so Howard & I went into a damage control mode. Howard had to pick up a couple of items at the grocery store and the girls were throwing fits over who was going and who was staying with me. Finally, I decided I was feeling well enough that we'd all go, so we did. When we got to the store, the girls and I stayed in the car and just hung out. I had a craving for KFC's macaroni and cheese, so we bought some on the way home and I actually was able to eat it for dinner. It was the first time in a long time that something solid tasted really good. I then slept for a few hours.
I'm now into evening routine. Hot/cold therapy, journal, exercise, and anything last-minute that I have the energy to do (hopefully tonight that will include a shower).
My Mom is coming up tomorrow so that she'll be here on Monday. We're kind of on standby. "Judy", the person who's in charge of the Clinical Research Study I'll be in, will call us on Monday and let us know what time we have to be there. I'm definitely feeling some anxiety over not knowing what to expect. I'm working hard on maintaining a positive attitude, but I'm definitely scared. The unknown is always frightening. I keep reminding myself of one of the things I learned in Gavin DeBecker's "The Gift of Fear" - no matter how horrible, we never fear the present. We only fear the future. By keeping yourself in the moment instead of allowing your mind to race ahead to the unknown, you can take charge of your life and avoid much wasted anxiety. Having said all that, I'm human. I feel VERY positive about starting chemotherapy because I believe it is what will kill this cancer and save my life. However, the idea of starting chemo is just downright scary. I'm glad my Mom is coming. There's nothing like having your Mom there when you're sick or scared. I feel so blessed to have her in my life. I just feel like a hug from her right now and it will all be OK.
I'm hoping that tomorrow will be another great day, like today. My hope is that going into Monday feeling good with a positive attitude will make a real difference in minimizing the negative side effects of the chemo while maximizing the benefits.
I'm also starting to wonder when I'll be able to return to work. My #1 job has to be to get well. However, as soon as I'm able, I really need to start bringing in some income again. Also, I'm hoping to force life back into a "normal as possible" mode as soon as it is possible.
I have not been out looking, but does anyone out there know of resources for information on how we should be handling this situation in regards to the kids? I think I mentioned yesterday, we let Allie know that Mommy's really sick and that we're all really scared. We also let her know that I would probably seem sicker while I was getting better. What do you tell a 4-1/2 year old child to help them handle this best? Rachael we're not too worried about - she's just too young to be getting any of this. However, Allie is very affected by it all. So, anyone out there with child psychology experience, please let me know what you think!
Well, it is time for me to finish up so that I can get a good night's sleep and shoot for good day #2 tomorrow. Today was definitely what I needed - I needed to know that I still had the strength for a day like today so that I feel more confident and in a better fighting position heading into Monday.
If I can journal tomorrow I will. Otherwise, it may be until Tuesday or Wednesday until you hear from me. I promise I'll post as soon as I'm able.
Love,
Deb
Well, I woke up this morning THINKING I was starting chemo today! When I checked in with Judy (the woman who heads the clinical study) I discovered that she was missing some tests that she has to have before treatment can begin. So, I did have a doctor's appointment today and my doctor declared me "normal". In spite of that, I have great faith in him.
The one test I had some trouble with - count backwards in 7's, starting at 100. I'm a visual person. Give me a piece of paper and these things are no problem. I'm not so great at mental visualization. Plus, I had my husband and Judy in the background being silly and distracting me. However, I made it to 79 and he let me give up. I hope they don't expect me to repeat that one if I'm drugged-out some day.
Tomorrow at 7:45 a.m. I need to be back downtown to get a pick-line put in. From what I understand, the pick-line is a semi-temporary IV line that will enable them to give me chemotherapy without having to re-start a new IV line every time I go. It will be more stable than just an ordinary IV line. In addition to that, the oncologist's office has contacted the same surgeon that operated on my colon and has requested that I have a port installed. The port will go under my skin and will allow for easier access to my veins, which are already getting quite tired and are starting to hide when needles show up. It is my understanding that I can keep a single port in place for up to a year. Also, once I have the port I won't have to worry about hitting it, or dressings, or anything else - it pretty much just becomes a part of me until I don't need it anymore. The port installation happens whenever the surgeon has time to make it happen.
***Wednesday I start chemo! Yes, according to the oncologist, it's really going to happen. We have an appointment at 9:00 a.m. Weds. a.m. We've been told that since this is the first time I'm receiving chemo, it could take up to about 5 hours. I'm assuming I'll be tired afterwards, but we'll see. I was feeling pretty apprehensive about chemo in general over the weekend and Howard pointed out something that really turned me around. He told me to think about all of the people who we see getting chemo when we're in. And, it's true. I thought about it. Except for a couple of really old people, most of the people we see, even those in their 50's and 60's seem positive and relatively "healthy" walking out. They don't fit any stereotypical visions that I may have formerly had about what cancer patients look like. So, I figure if they can do it, I can too. Plus, I'm VERY ready to start being proactive. I so totally want this stupid cancer out of my body. Anyway, back to the chemo sessions - subsequent sessions should take less and less time, until we're down to just a couple of hours.
The other big news we'll get tomorrow is to find out which study group I will be in. That's really key because at that point I'll know exactly which medications I'll be on and how they'll be administered. One study group only has to go for IV chemo once every three weeks whereas another group has to go once a week.
Other news we found out today was mixed. The doctor went over the Cat Scan results a bit more thoroughly. The bad news as I mentioned the other day, the mass on the liver is about 3" x 2". There's a large tumor near the kidneys that's almost 5" long. Plus, there's evidence of cancer in the lymph nodes. All that, but the one that really scared me is that I had fluid in my right lung. As someone who's suffered from asthma since I was a kid, that was REALLY scary. The good news is that today, when I was examined, the fluid was gone. I like to think it's all the exercise I've been doing. Or, it could be all that praying you've all been doing for me. Either way, I'll take whatever little bits of sunshine I can find wherever I can get them!
Also, my oncologist was really amazed by how well my incision had healed and said, "Wow, you're a fast healer." "From your lips to God's ears," I thought.
So, 2 more days - less than 48 hours -- and at long last we'll be able to start fighting back.
Even once the chemo starts, there is no set timeframe to all of this. We just keep going until the cancer's gone. So, grab a comfy seat - there's no telling how long this ride will be. Thanks for your support and companionship along the way.
Love,
Deb
Hey, hey, hey… we did it!
We made it through my first day of chemotherapy with flying colors. I say "we" because I honestly don't think I would have had the same experience today if it had not been for all of the prayers sent my way. So, if you've prayed for me, you're part of "we"!
Actually, the one part of "we" that wasn't flying so high today was Howard. Nerves caught up with him this a.m. and he was sick as a dog until late-morning when he saw for himself that I was actually OK. But, I'm happy to report, he's fine now.
I had a very full day of chemotherapy. My appointment was at 9:00; I actually started receiving the drugs around 9:30 and didn't finish up until after 3:30. I received 4 different medications today: Avastin (will be known under the brandname VegF), Oxaliplatin (brandname Eloxatin), and 5-FU with Leucovorin. I received "pre-meds" (several different meds including anit-nausea medication and a steriod) before getting the Oxaliplatin. The result of the steroid is that I have some extra energy AND it gave me quite an appetite. So, not only did I come home feeling good, I was actually hungry for a change - I had seconds on supper tonight. I am tired, but after a day like today, I certainly have a right to be! My biggest complaint is that my lower back is really sore from sitting in the "lounge chair" all day. I've attached a picture of me in the chair. Allie asked me to take a picture so that she could see what it looked like when I was getting chemo. I figured I'd share it with all of you so that you could see for yourselves that it's REALLY not all that scary.
I wanted to let you all know that at several points today, when I felt myself really relax, I could feel pure "love energy" surrounding me. I know it was due to all of the prayers that have been sent on my behalf. I don't know how to say "thank you" - there are no words to adequately describe the feelings I have. Just know that the love I'm feeling is returned to you, too.
The one side-effect I'm already feeling from the Oxaliplatin is a sensitivity to cold. Judy warned me that I'd have it! They gave me a pair of gloves at the doctor's office, just in case I need to stick my hand into the refrigerator for something. Everything I eat/drink needs to be room temperature or warmer. And, when I drink something that's a bit cool it feels like it leaves an odd, frosty film on my tongue. Unfortunately, it's not a refreshing cold - more of a filmy plastic, but it does go away quickly.
On my "to do" list in the next couple of days is to get to the mall and try on a few wigs. I found out that I can order them online and, according to the other chemo "experts" today, that's the way to go. However, I need to checkout a few different colors and styles before I'm willing to mailorder that type of purchase.
I'm hoping to have another good day tomorrow, but I'm also a realist, so I'll take it one day at a time. At this point I haven't had a pain pill since Saturday. I do still have the pain patch on, which I'm changing every 48 hours. However, I haven't needed additional medication. I've handled the "break through" pain with topical salve (Biofreeze - it's like Icy/Hot). I'm hoping I can continue to do this so that narcotics can be out of the picture. Also, Howard was right - the cold sweats WERE due to the morphine. I still get sweats, but now they're REAL hot flashes. I drink water and strip down until the flash passes, and then I can move on with life. They're much easier to handle than the cold sweats that were lasting for hours at a time.
So, let's all take a big, deep breath. I feel like we've at least entered Stage II and now I'm DOING something to fight back. It feels a lot better than sitting back knowing these tumors are attacking without being allowed to stick up for myself!
I'll be in touch soon.
Love, Deb
As you all know by now, chemo went well. Thursday went well, too. Thursday evening, per her request, we brought Allie "to speak with a Rabbi." In preparation for this, I had been trying to find out what it was that she wanted to ask the rabbi, but she didn't want to tell me. I tried to prep her that she needed to make sure she knew what she wanted to say so that when she saw him she'd be able to ask. The Rabbi couldn't have been any sweeter. He remembered Allie from the very few times we'd attended services. Allie was initially very shy. I gave a quick summary of my situation and her request, which is why we were there. He called her over and had her sit on his lap. She asked him, "So, how are you?" He said, "I'm fine. The question is, how are you?" She said, "I'm fine. I think that's really all I wanted to know!" He asked her a few more questions, but she really didn't have much to ask or say. However, after the meeting she definitely seemed more at peace. Howard & I both think that she needed to know that she'd be able to speak to a rabbi should she feel the need - this was just a test. Howard got me home, gave me a pain pill, and I was out for the night.
When I went for chemo on Wednesday, Judy told me about a young woman that had been fighting colon cancer for a number of years that she really wanted me to contact. She said that she knew personality-wise we'd hit it off and felt we could offer support to each other. On Friday I called "Ana". Judy was right; we hit it off. Our stories are very different, but certainly there are a number of similarities. I didn't think speaking to someone else in the same predicament would have any affect on me, but it did. I hung up feeling extremely blessed and very aware of how lucky I am to be getting the Avastin. Ana is going to come visit with me when I get my third chemo treatment (next week wouldn't make much sense because I'll be there less than an hour). I can't wait to meet her.
Friday I was extremely wiped out. Howard had heard from a number of people that it's frequently "x" days after chemo that it really hits. My number may be 2. I was very nauseous and extremely lethargic all day. Basically, all I did was sleep. We had an appointment in the afternoon with the surgeon. It was a post-surgery appointment for my colon surgery and a pre-surgical appointment for my port. Port installation is now scheduled for next Thursday; they'll also remove the PICC line at that time. My post-surgical scar is healing extremely well. We came home from the appointment and I made an attempt to join everyone for dinner. I had some soup and some rice, but not a whole heck of a lot. Unfortunately, after I forced myself to do Qigong last night I discovered that none of it had digested and I got sick on everything. Howard put me to bed and we hoped for a better day today.
Today has been marginally better, though I'm still not really "OK". We dragged me out of bed this a.m. and I did my exercises, somewhat half-heartedly. After a nap, my Mom took me to the mall. I tried on a bunch of wigs and got an idea of a color and style that would work for me. I'm going to go much redder than my natural color and with a style that is straight, but just a bit shorter. I'm planning to call the American Cancer Society on Monday to find out what they might have available and how their whole program works.
The other thing I did at the mall today was find a pair of blue jeans that fit. At least I now have one pair I can wear out of the house. The pair I picked up was a size 8 - and they're actually a bit roomy. I didn't want them to be tight in case I was having an upset stomach type of day. I can't even remember the last time I bought a pair of size 8 jeans - I think I was in high school.
The one post-chemo problem I'm still having is that I have NO appetite. I really haven't been able to eat anything all day today (excepting 1 pop tart and ˝ a pretzel). If I can't eat by tomorrow I'll page the doctor to find out if there's something he can give me to stimulate my appetite. I can't force myself to eat or it just all comes back up on me.
Poor Howard was all ready to start all of my herbal supplements when my lack-of-appetite kicked in. I'm hoping that we'll be able to work through this side-effect pretty quickly and that it will be manageable once we acknowledge it.
Tomorrow Mom may take me to Target to see if I can get a couple of pairs of stretchy pants that I can wear. I need something that I can sleep in or wear out to a doctor's appointment. I'm not looking to win any fashion awards - I just need something that will cover me up, hip to ankle, which is more than I have in my wardrobe right now. The kids have a birthday party at our neighbors' house tomorrow afternoon, so if Howard takes the kids to the party it should be a good time for Mom to take me to the store. We'll see. Also, one of my friends from work indicated that she might try to stop by to visit tomorrow afternoon, so it may depend on if that comes to fruition. I'm quite ready for a visit these days and would choose company over a trip to the store.
I know I'm missing a million different stories, but I really can't think of anything else that I needed to post! Plus, I'm still lethargic. I'm ready to get my Qigong out of the way so I can just go to sleep for the evening.
Love,
Deb