I Chemo #2

OK, I was suppossed to go for chemo on Thursday along with dr. appts with 3 different doctors.



*Dr. Lee wanted to check on the breast infection,which is still there, so he kept me on the Levaquin and added Bactrim, together pretty powerful antibiotics. I need to keep eating my yogurt! if the infection doesn't go away by next week, it might lead to hospitalization and IV antibiotics. Worst case would be if that didn't work, then the expanders would have to be removed. But I'm trying to stay calm and positive.



*Dr. Shah just wanted to check in with me. I'm not sleeping great or eating too well, but overall not too terribley bad.

*Dr. Lohta (oncological internist) said I didn't need to see him. (thank goodness).

*Dee (Ott's mom) and I met Chrsi for a lesuirely lunch, which made me 1/2 late for chemo!! Not a great start, plus I did not have my lab work done yet. So off to what turned out to be a little crazy day! I got my 2 , (you read it right, 2) anti-nausea drips, plus I had to take my oral one. Then they started the taxotere, which they dip very slowly to look for reaction - ususally the 1st or 2nd treatment. Sure enough, I felt a little trouble breathing - a weird feeling, like my chest was tight, but it made me cough a little. So I told the nurse. She very calmly turned of the iv drip, and said a few people would be coming into help her. OK, seriously, like 8 nurses coming walking with a strong sense of urgency asking what patient?? They each had a very specific duty; blood pressure, oxygen, pulse/ox, callin Dr. Shah, etc, etc. I stayed calm and of course started making jokes, prompting a nurse to ask Dee why I was making jokes. Anyway, they pushed a bunch of benadryl, watched me for an hour, and sent me on my way with no chemo!! I was very disappointed thinking that the only "good chemo" now can't be used on me, etc, etc.

*Dr. Shah called me before 8 am the next morning with news that she had decided to change me to adriamycin - a ver old drug that does have some cardiac risks along with it. I got little teary, as my own mother died of actual heart failure from chemo therapy, but that was 30 years ago and I don't even know if it was the same drug! Still, old traumas die hard! Anyway, Dr. Shah wants me to saty as close to schedule as possible, so she put me in for Monday a.m. with an echocardigram scheduled for next Monday.

**All went well on Monday, no reactions and a much shorter chemo time, as they can run both drugs together. They upped the anti-nasuea meds by adding 3 more! I gues the ardiamycin is such pretty nasty stuff. It's Wed. pm and so far so good! I have been taking the meds religiously, although you need a friggin' PhD just to figure out the 17 different medicenes I'm on right now!!!

**Work is going well, and I had an exceptionally good day, today! I work with so many great people who are so caring and willing to help, it really is great. Although there is a litle evidence of mouse poopy on my windowsill, s let's hope we can get rid of that bad boy before it runs across my foot and gives me a real heart attack!

**Tomorrow (Thursday) I go in for the wonderful Neulasta shot and for expansin by Dr. Lee. Hopefully the infection in the breast is gone and all with go well. please cross your fingers, do the voodoo, say a prayer, send a good wish or vibe - whatever it is you all out there do. I could really use it tomorrow!!

Please excuse all the typos, I'm not editing tonight as I had a rough night with my oldest child and she has worn me down!!

much lve and peace to you al
m

It's done, I'm bald

I have had a really bad week, which apparently writing wouldn't help, so I know I've kept some of you out of the loop.

I'll start at the beginning of the week, the advil rotated with tylenol/percocet really, really helped with the bone pain. It was a medical miracle. =) So, since it was working so well, why not stop doing it to see if the pain is still there, right? That was my brilliant idea on Monday. In the words of my high school BFF (ha ha) Julia Roberts "BIG MISTAKE, BIG" (from Pretty Woman). Immediately I felt crappy and I started a fever - not good when you are on chemo. So after a couple calls to the on call dr. and various suggestions throughout the week, I made an appt. with the dr. on Friday morning to see what was going on...

well when I woke up Friday I noticed my right "breast" (the one giving me trouble from the get go) was red and very warm. I was very distraught on the way to the doc. I felt stupid that I had not noticed it before then. Plus, I was very concerned about what that would mean. Sure enough, I cried at the dr.'s office! Dr. Lee's PA circled my "boob" with a sharpie, said if the redness moved outside the line to call immediately, then gave me a prescription for 10 days of Levaquen (sp?). She looked a little grave, so I'm concerned.

Then I was sent to have lab work done, which had to be done through my port AND from my arm, as not only are they doing a CBC, etc, they want to get 2 blood cultures. (they want to use some of the stuff from my blood to grow something in the lab - hopefully not Frankenstein or something - for a few days to see if I have something else going on, which of course worries me. But the nurse who drew my blood (the phlebotomist) from my arm was sooo wonderful. Her chi was the most serene and calm I have ever been around. I just wanted to hug her.

To add insult to injury, my hair was coming out in clumps beginning Friday morning! Very pleasant! At work, a friend suggested I a write an email to the staff about staying away from me when I am sick, help to lighten my load by not asking me to do new things, etc. I know all that is good for me, but so much of who I think I am is tied into being "a machine" "the energizer bunny" and my general lack of reaction to germs, so the email was so much harder to send. So Friday was the culmination of just a yucky week. The overwhelming feelings made me wonder if I feel so depressed, am I also being strong? The 2 seem to conflict for me. I mean if I give into the sadness, how am I going to be strong and get better? But if I try to "stay strong" or try to appear strong all the time, it doesn't feel true to me. I'm confused. I felt so depressed the entire week and really into the weekend. Although, I'm not sure how this is possible, but literally I was so happy and so depressed all at the same time all day Saturday.

Our whole family went to Busch Gardens. The girls have never been, they were so excited! And let me just say we have raised those girls right, they wanted to ride every roller coaster and they didn't even need/want us to ride with them!! We rode a few with them, but they were perfectly happy just being 2 little cohorts and "best friends" (even though they would never admit it!) who were satisfied as can be, just being together. That is the part that made me so happy. And I KNOW this is not going to happen, but it made me feel good that if something happens to me that they will be there for each other. And that made me think and feel relieved that I've helped to get them through some of this first developmental stuff and given them a strong base. I know... it's depressing at the same time. As I said, I didn't know it was possible. But that's how I felt the whole day, and whole day was 7:00am to 9:00pm! It was an absolutely wonderful day with my family!! Truly!

But sleeping has been another ballgame all together! I don't know if you know the feeling, but I haven't been able to help feeling like I don't want to been in my own body! Just very fidgetty, discontented, just wanting to be somewhere else. Then, the clumps of hair!!

So I went shopping this morning for Emma's birthday - something I LOVE to do - most moms probably get that, their birthdays are so much fun for which to prepare! Then, as I'm driving home, I'm garnering all my courage to shave my head! I got home and said let's do it! It was an entire family affair. The girls were hesitant at first, but then they got into it! We video taped the whole event! We were laughing and joking. we actually had fun. It's not as smooth feeling as I thought it would be, and my head's colder than I thought it would be, luckily I have a night cap to sleep in already (thanks Jan) but as for the rest of the plan - I got nothing, yet!! Emma was mortified that I went into the driveway with nothing on my head, and poor Skylar has to go to school where I work, so no head cover will not work for her either. If only they weren't tweens! =) I'll figure out something, but until then I think just a bandana will do. Getting to this point was soooo much harder than I thought it would be! Letting the boobs go was a piece of cake compared to the hair, and I usually only wore it in a pony tail anyway!! I'm feeling so much better now. I will start back to eating better and forcing myself to eat even when I don't want to. It's not that I've been eating junk food, I just haven't been eating every meal, and every meal has not been balanced this week. So I'm off to get a steak and a salad! yummy!

much love to you all!

monique

Pain, pain go away...

OK last night was awful! This bone pain business sucks! Seriously!! There is no way to sit, lay down to ease the pain. So all I did while I was in bed was toss and turn and cry. When I finally got up, as I mentioned, I took a hot, hot bath that helped for about a minute. So after writing, I took some tylenol and tried to get back in bed. Again, I tossed and turned and cried.

I'm not sure everyone is like this, but, and I'm not sure I'll be able to express it well in words, but the intense pain I felt brought me to such a primal place that all I wanted was my mom to take care of me. I wanted her to be up and awake and rubbing my legs, or getting me water, or holding me. I know that sounds crazy if you don't get those same feelings. But I was thinking about if this were one of the girls (God forbid!!!!) and what I, as their mom, would be doing to try to comfort them. And that's what I wanted. So the crying was absolutely because of the pain, but it was also because I didn't have that. Then, I started thinking about Jen, and thinking how upset she will be when she finds out that the day after she leaves is when the shit hits the fan, so to speak!!

Arthur was sweet when I got back in bed and rubbed my hips and lower back, and that was the only way I was able to fall back asleep, which was well after 4:00a.m. I know he didn't get too much sleep either, and I feel bad about that, but I am glad he was there.

In the morning, I was still in pain, but I was able to take the Allegra and get myself off to work. I figured being at home in pain with no relief was worse than being at work where I could sort of take it easy and be distracted from what I was feeling. I did find out from the nurse that I can alternate advil (or aleve) with the tylenol - thank goodness!! Those are anti-inflammatories, so they should help. And I have a plan for tonight. I have taken aleve already. I will be able to take a percocet at 9:00. I will also take a little benadryl to help me sleep. Then I will be able to wake at 1:00 or so to take so advil and benadryl. So although on one hand I am dreading trying to sleep, on the other hand I am confident in my plan! And the silver lining to all this is that the Neulasta is working - doing it's job of major production of white blood cells - and that's a very good thing!!

Looking forward to a lovely breakfast in the morning, and then a great day. Hope the same is true for all of you!

much love and peace,

monique

Neulasta & being "expanded"

My Neulasta shot was Tuesday afternoon, and let me just say it was not pleasant! They need to give it in your fatty tissue (God knows I have lots of that!) so I picked my tummy flab. The needle is tiny, but the drug can't be "pushed" in fast, it has to sort of linger a bit and that hurt!!!! It stung, a lot!! I hate needles anyway, but this particularly sucked! Jen was there holding my hand, and I was totally crying! After the nurse was done, it was fine. No more pain, but after I get "hurt" like that and cry I always feel a little fragile and wimpy, so I was definitely a little down. The nurse said if I was going to feel this wonderful "bone pain" that I've been hearing so much about, it should happen within the 1st 12 hours. They prescribe Allegra for it (Odd, right?) and I could take as a preventative if I wanted. But I felt like there is already so much crap in my body, I'd rather wait and see if I actually feel it. So miracle of miracles, I felt fine when I woke up on Wednesday! I was scared to say it or tell anyone I felt OK because I was scared to jinx myself. I knocked on wood all day! But still, no pain!

Wake up Thursday, same thing, no bone pain - a friggin' headache that I can't seem to get rid of - but no bone pain! I'm a little nervous all day for my appt. with Dr. Lee to be expanded - again the needle is what I dread! We all (Dee, Arthur, Emma, Skylar and me) arrive for my appt at 4:15 to be told Dr. Lee is running 2 hours behind due to an earlier emergency! Crazy, huh? Anyway, we sit and wait. I get called back (only 1 hr and 15 minutes late). His PA removes my stitches that he put in 2 weeks ago. Then she gets out her little magnet finder thingy to find the port in each of the expanders. It's a cool little tool, anyway I am beyond nervous. But, not sure if I've told you this yet, but most of the feeling in my "breasts" is gone, and mercifully, the ports were located in a non-feeling area, so the needle didn't hurt!! Then she attaches a big, fat syringe of saline and pushes it in. I'm choosing not to look, but truly there was no pain!! Now, because the expanders are a little fuller, my muscles are back to being a little more tender, but nothing as bad as I thought it was going to be!! So thank goodness!!

So we all go to dinner, then a trip to Target. At this point I am starting to feel very achy in my legs and lower back, not to mention my friggin' head!!!!!! Anyway, I'm walking slower, maybe even with a little limp. Seriously?? I'm actually considering using one of those Little Amigo thingys they have there to ride around in!! SO THIS is what "bone pain" feels like?? Not so fun. Do you remember when you were a kid, and you would get leg aches or growing pains (or whatever they called them in your family) in your legs? That's what this feels like. I can feel it in my hips and down my femur, which I think is causing my lower back to hurt. I can feel it in my sternum (chest bone) and in my shoulders down to my elbows. I took an Allegra as soon as I got home then took a very hot bath and I was like a different person! A miracle! So I fell asleep pretty easily only to be woken up but this awful pain again at 12:40! So I try the bath again - helps for about a minute - and so here I am at 2:45 in the morning talking to you all!! I can take the Allegra only once a day - poopy, huh?

I might go try to take some tylenol and try to sleep. We'll see...

much love,

monique

Can't sleep

This may ramble, as I'm not really sure what I want or need to write about. But laying in bed trying to sleep is pointless. I don't feel sad. I don't feel hopeless or depressed. I feel some dread at trying to sleep because for the last couple of nights I haven't been able to get comfortable, so the entire night is not restful. So it's a little frustrating.

And maybe, I'm dreading the Neulasta shot tomorrow. As I mentioned earlier, the shot is intended to stimulate production of white blood cells at a very high rate, which happens in the bone marrow inside your bones. The result in 80% of patients is "bone pain" in the larger bones like your femur, sternum, and humerus (your bigger bones). But who knows, maybe I'll be in the 20% who doesn't get it!! This particular portion of my treatment is really more of a preventative measure to insure my white blood cell count does not go too low throughout the chemotherapy.

But as I was laying there (is it supposed to be "lying there?" I'm not sure) trying to sleep, my thoughts wander. I was thinking about my sister leaving on Wednesday. I know she has to get back to her life, but I can't help but feel sad. I know the families we create, the people we marry, the children we have are our own, but there is something about our families of origin that makes us feel safe and taken care of. Maybe that's just me and how I feel, maybe everyone doesn't feel that way. But I do. And maybe, since our mom died when we were so young and with Daddy dying just 5 years ago, I feel the connection to my sister as the one last string to someone who has known me longer than anyone and who knows me, really knows me - all the shit and all! - and yet still loves me and wants to take care of me and protect me. And without that I am going to feel lonely and vulnerable. Normally, our separation (she in Seattle, me in Orlando) is manageable, it can be handled. But the fact is I "feel" fragile right now, so that separation will be that much more difficult for me.

I'm not sure where to go from here, where to take this... but I do know she and I were raised by strong people, and we both will be OK. Because in spite of my cancer treatments, she has a lot going on, too. I think I've written about it but her husband will be in Iraq for a year, she'll be a "single" mom of my 5 1/2 yr. old nephew, she is trying to pass her nursing boards and get a job!! So we are both worried about each other, but we will be just fine. We will continue to be a support for each other. We are too enmeshed not to be!

Now, the blessing of Jen and Freddy leaving on Wednesday is that Dee, Arthur's mom arrives the same day!! I am so lucky to have a mother-in-law willing to come and help take care of me. And, as mentioned above, this fragility that I am feeling is not something I am used to. But having someone (Jen and soon, Dee) here to allow me to feel and live that and maybe help to put my bravado to rest a while is a good thing. I think my own family may not see/accept what is happening to me yet or ever??!! Who knows? But I know my pertinaciousness when it comes to continuing with the same routine, kids activities, work schedule, involvement with the girls' classes, not to mention going to the movies with Arthur, etc, etc, has not made it easy for them to see the real seriousness of the chemicals going into my body and the effects those will have on me. So I need to be sure that I am continuing to read and learn about how to keep talking to my family about all aspects of this. And...making sure I let myself just be, the authenticity of how I'm really feeling should (and hopefully will) be the true method for showing them what all this is about.

I just yawned twice, so let's hope sleep will come!

much peace and love,

monique

All's well

Monday morning (OK, afternoon) and I'm feeling good. Headache not gone, but under control. Everything else is just fine! I'm excited to get back to work tomorrow, although at some point during the day I have to get my Neulasta shot, about which I am not excited!!
Anyway, I'm looking forward to being at work. I truly have the best job, and additionally, it is such a good distraction from all this cancer treatment business.
So happy Labor Day everyone!
much peace,
monique

The weekend progresses

Things did not conintue as smoothly as on Thursday and Friday. I'm not sure how to describe how I felt on Friday except to say a little puny, a little fragile. I felt queasy, but no actual throwing up. But I had to keep my mind focused away from that feeling! I also started getting a headache, which could be from a myriad of things. But nonetheless, it didn't feel so good. My sister, angel that she is, purchased 3 massages for me from West Orange Massage, so I was able to get to that appt. and it was wonderful!

Today, my headache was killing me! The queasiness has gone - thank goodness - but the headache is there. Again, it could be sinus, it could be a cycle thing, it could be from my family (ha ha), or it could be from chemo drugs - who's to say? But I did get weepy just trying to figure what mediactions I could take. I know it seems silly, but 3 months, all I had to do was read a med. bottle, or for that matter I mostly knew, if I wanted to take a sinus medication or a tums! Now takes an Act of Congress just to figure out IF I can take a certain medication. Who knew taking something so simple as a friggin' tylenol could be so complicated or would make me cry??

In the end, I was able to take the sinus meds and it has helped some. A member of my Posse, Kyle, came over and rubbed my back, head, and face for a long, long while. Jen, Kyle, and I had a nice visit, and the distraction was definitely good for my headache! I've been able to eat today, much more than yesterday, so that's good, too. I've not had my 3 liters to drink yet today, but I should be able to get it all in.

The following day

I'm here, the day following chemo. So far, and I must be honest, I'm sacred to write all this with fear of jinxing myself, but I'm not nauseous, I don't have itchy skin, I don't have a fever, I still have all my hair (ha ha), I'm hungry, I feel fine. I know, I know, all this can change in an instant or tomorrow or every time I have chemo, but for now, 1 down 3 or 5 more to go!

I was accompanied by my sister all day, which was really comforting, eventhough I kept syaing I'd be fine. Everyone has been so nice from the valet at the Center to the receptionist to the, well, everyone. At the desk, they knew this was my 1st time and they were very sweet about it. After arriving, the day started out a tiny bit nerve racking, and although I had a sweet young lady, she was unable to find my port the first time. Then she mentioned that maybe the port had been turned around, which freaked me out and I started crying. But she got an older woman to come in and did it with no problem. So, my blood work was drawn, the needle left in, and I was ready for later in the day.

Next I went to see Dr. Lee, which by now is no secret that I have a huge crush on him, so he always puts me in a good mood. He said the small infection I had before looks fine and the stitches he added last time looked good as well. He dedcided he'll wait until next week to expand me and take out my stitches at the same time.

My next stop was with Dr. Shah. I think it was just to check with me, go over my blood work from the a.m., see if I had any final questions. This worked out great because I was able to her and her nurse pratictioner, Laura, 3 important final questions; 1st involving if I should take this 1 specific final test to determine if chemo was right for me, 2nd wondering if the chemo drugs get adjusted throughout my treatment and for what reasons, and 3rd how she will determine if I have 4 or 6 treatments. I felt good about the answers to the 1st 2 questions, but the 3rd she seems as if she's leaning towrd the 6 treatments due to my age (being young for all you smart asses out there :) ) . Overall, I was feeling fine, not too nervous.

At this point we went to lunch and dropped Freddy off at Sarah's house for a playdate with Finn and all the Doherty children. (thank you so much, Sarah) He had been a doll all moring, but we thought 3 hours of chemo was too much!

So we went back up to chemo floor. I was called back to room 10 and my nurse was Maggie. She was so nice; smart, informative, explained so much w/o being condescending. She had so much information to share about the meds, side effects, and explained every step along the way as she did it. None of it hurt, it was just like sitting there with an i.v. in. Although I thought I'd get plugged in at 2 and be done at 5, so I'd have a full 3 hours to read or sleep. But in my case, it was, med after med, after med. I think my longest uninterrupted time was about 45 minutes. Overall, it was a perfectly fine experience. I got home feeling perfectly fine. In fact I was in the mood for Sonny's BBQ, so we went over there for dinner. I did fall asleep before 10, and I slept/ stayed in bed until very late today. But if that was chemo or just my regular m.o. who's to say??

Next time, although children are not really allowed in the treatment rooms due to the fact they are little germ carriers, they have said the girls can come by very quickly just to see what is happening with me. I want them to have a visual of what is happening when "mommy is having chemo." I think this may lessen their anxiety. They haven't verbalized any stress, but curiously the night before I had it niether one could sleep and came into our room at different times during the night.

So, so far so good! We'll see how the weekend goes, so keep your fingers crossed! In 20 days I do this all over again! I have a few proceedures inbetween, like getting a neulasta shot Tuesday and I get expanded on Thursday. So I'll update about those as well, and I'll keep updating as the weekend goes on.

Thanks so much, I know I say it often, but truly, all of the support shown to me/us from the incredible meals to the warm thoughts and prayers are truly a lifeline for me. It all means so much!!

peace and love to you all,
monique

Chemo tomorrow

I'm not sure exactly how I am feeling. I was trying to get everything done at work since I'll be out for the next 2 days. That's always hard; there's always that one more thing you want to try to finish. But I'm home now and that's that.

I'm a little nervous, but am focusing on trying to get out of the sad mindset and into the mindset that I am going to kick this chemotherapy's ass! I know I'm doing the chemo to keep me alive longer and to give me peace of mind. And I know the meds are strong for a reason, but I think if I have a strong frame of mind, then I'll feel stronger, and maybe, it won't have such terrible effects on me. Now, I know that doesn't make sense. I realize that the medicene will do it's job, and part of that job, however unintentional, is to cause harm to healthy parts of me, too. But, I feel that it would be better for me to embrace a stronger attitude than to succumb to the sadness and punyness (I don't think that's a word, but whatever...). I feel that strength in me, I know it's there, I can almost grasp it. So, I'll let it arrive when it wants, and I will be ready to grab hold of that strong attitude, then let the sadness come, but not stay.

Now, here's what tomrrow will look like:
8:30 access port and lab work
9:00 appt. with Dr. Lee to expand the "breast balloons"
10:15 appt. with Dr. Shah, not sure why, but I have a couple of questions, so it'll be good
1:30 report to chemo room (5th floor of MD Anderson) to get ready. What that means I have no idea.
2:00 start chemo, to be administered through the port
5:00 be finished and go home

Now, I'll take a little time to give you a quick description of what my treatment will be like. Quit reading now if you are not interested. I'm writing about it for those of you who are curious, like I would be.

*1st, I have a lidocane cream that I have to apply to my port site an hour before it is accessed. It is to numb the skin so the needle (which I HATE, still) will not hurt as it is accessed.
*Also, an hour before treatment starts, I am to take an anti-nausea med called compazine. I will alternate that every 4 hours with ativan until I feel better which could be 6 hours or 4 days!! "They" keep telling me everyone is different.
* I also have separate prescriptions for each of the following heartburn, constipation, diarrhea. Seriously??? How is it possible these can happen simultaneously???
And those are all to be prepared for the effect of the chemo treatments!!

*The 2 meds that will be infused during actual treatment are Taxotere (side effects: lower immune system, nausea, diarrhea, feeling tired, hairloss, etc, etc) and Cytoxan (side effects: headache, nausea, hairloss). Fun, huh? This will be done over a 3 hour period every 21 days (9/4, 9/23, 10/14, 11/4) at the hosptial via my port.

*To add to the fun of all that, the weeks in between chemo, I will be getting shots of Neulasta (side effects: headache, constipation, severe bone pain) to help reproduce white blood cells.

Sounds like a barrel of laughs, right? But please don't feel sorry for me, please!! I am OK. People feeling sorry for me is the worst thing about this entire cancer business. Many, many women have been through the same thing that am about to embark upon and made it through, and are probably stronger for it. I will join those women!

much, much love and peace,
monique