Now what?

This blog was started to keep everyone posted as I progressed through my journey with cancer. It has served its purpose, well at least it has given me a place to post and organize my thoughts. I guess by definition I am cancer free. The cancer was removed with my surgery, no cancer in the lymph nodes. I am so happy that I am finally through with chemotherapy and the surgeries are past me. It does not appear that I am having any major side effects from my Herceptin or Arimidex. I do have some random joint pain but I am not sure if I can blame it on either of those medicines. Oh and the hot flashes, well that's something I knew was going to happen.

Now it is time for me to get back to normal, well my new normal, as I like to call it. I don't think things can ever be the same. But really no matter what is going on in life things move forward and things change. I am looking forward to next year and I am hopeful that it will be full of great things........but at the same time I am waiting for the cancer to come back or be somewhere else. I am sure this has to be normal and I am also sure these fears will lessen as more time goes by. In the meantime, I will move forward, cautiously optimistic.

Where to start....

I last posted pictures of my drains. At that time I was feeling great, well as good as could be expected following a major surgery. The next week I started going back to the gym, doing some minor chores around the house, and even got one of my drains out. I decided that since my dad is ill I should take the opportunity of some downtime and go visit him in Poplar Bluff.

Jaxon and I loaded up on Thursday Nov. 11th and headed to Poplar Bluff. The next day I woke up not feeling very good. I tried to push through the day but just seemed to be getting worse. I finally took my temp. around 5 p.m. and found I was running a 101 temp. Not good when you have just had surgery and have a tube hanging out of your body.

I ended up in Urgent Care with chills, nausea, fever and severe pain along my left side. The Dr. felt I needed to be admitted to the hospital but thought I was safe to get back to Springfield. By that time I couldn't stand up without having ringing in my ears and feeling faint. My friend Lisa saved to day and drove me back to Springfield. I stayed the night at my house but Saturday was not feeling any better so I headed to the Emergency Room.

I was finally seen by the surgeon on call who confirmed that I had an infection but did not feel I had an infection in my wound!?!?!?!?! He did feel that I needed to start IV antibiotics and admitted me into the hospital. After only 2 rounds of IV antibiotics the pain in my side finally started to decrease. My fever broke on Sunday and things began to slowly get better. My physician finally saw me on Monday morning and took a sample from my drain tube to test for infection (GO FIGURE!!). It came back on Tuesday as a staph infection. Yes that is correct, staph infection in the area of my wound. Fortunately by then I was feeling much better and was ready to go home. I was released with a heavy dose of oral antibiotics that I was to take for 10 days.

When I got home (Tues 16th) I realized I didn't feel as good as I thought. I still had some soreness, my arm movement had regressed secondary to not using it for 4 days and I was scared to death that some germ was going to invade my drain tube again.

No rest for the weary, I was at the hospital on Friday Nov 19th starting my first round of Herceptin. As mentioned before, this is an infused medicine but without the common side effects associated with chemotherapy. I did have the chills that night and was tired the next day but I am not sure if this was associated with the treatment or not. Will have to wait and see what happens the next time around (Dec. 10th).

The next week flew by with the Thanksgiving holiday. I did get my other drain out on Nov. 22nd. Today I returned to work. I had computer training all day which I think was a nice transition back to work. Tomorrow will be my first day to see patients.

I have had a really hard time with the thought of going back to work this week. I did not feel ready, it did not seem that I really had enough time off. This was supposed to be my time to heal from all the !@#$ I have been through all year. Some much deserved ME time. It just didn't seem possible that it was already time to go back to work. This morning I started reviewing the last month that I have had off and realized that in the last 27 days, I only spent 6 of them truly by myself. The light bulb went off, no wonder I felt like I had no ME time...... I really didn't. So I guess ME time wasn't meant to be and I have resolved it is time to get back to "normal"........Well I am not sure things will ever be normal but I will continue to move forward. Is there really any other choice!?!?!!

Drain tubes!!!

The first picture is the drain coming out of my side. It is held in at the skin with a stitch. The other 2 pictures is were the tubes drain into. One for each side. Have to drain 2-3 times a day and record the amount of drainage.

Pathology report confirmed

Saw the Dr. this morning. He confirmed the good news of the pathology report. 12 cancer free lymph nodes, no cancer in the right breast or the ovaries and clean margins around the tumor that was left in the left breast. All very good news.

He seemed satisfied with the way everything looked. I go back to see him on Monday. He wants to get the drains out as soon as possible but I have to get down to draining about 30 cc (on each side) before he will take out the drains. Yesterday I drained 275 cc on the left and 75 cc on the right. He is hoping to get the one out on the left by Monday.

I have an appointment to see P.T. next Tuesday. I am going to learn some techniques to decrease my risk of getting lymphadema. I will also get a sleeve as a preventative measure to be used when traveling.

Post surgery

Well it is finally over, the dreaded surgeries are finally behind us. I went in Tues. morning for my surgeries and all went well. I had several visitors when I got to my room. Thanks for the visits, kind words and gifts. Sorry if I said anything weird or strange, I may have been a little drugged at the time. The overnight stay wasn't too bad. The pain was tolerable and I was able to go back to sleep after each time the nursing staff came in to check on me. They took out my catheter, IV and even gave me a bit of a sponge bath all in the middle of the night. Kind of odd but very glad to get rid of the catheter and IV. We left the hospital yesterday around 3pm. Last night I slept in a recliner and I slept pretty good. I was able to take the bandages off and get in the shower today. It was nice to take a shower, although I did get light headed and my ears started ringing. Cut my shower short but I didn't pass out. Jen let me get out of the house for a few hours today. It was nice but it did wear me out. Overall my pain isn't too bad but today I have had these sharp pains in the area of my chest. I got a copy of my pathology report today. I think everything is good, but I want to discuss it with the Dr. first before I start celebrating too much. I do see the Dr. tomorrow at 8:45. Like I said looking forward to him going over the pathology report with me to make sure I understood everything that I read. I am going to relax for a bit and then probably settle down to go to sleep. Thanks to all and to all a good night!!!!

Catching up!

I can't believe it has been almost a month since my last post. Sorry! The first few weeks I was just living a "non" treatment life and the last few weeks have been busy getting ready for Jaxon's Birthday. I will try to catch up on this month

Pink in your think:

The above is a line from a Disney Pixar Short. It has played over and over in my head this month. Pink is everywhere! Since it is Breast Cancer Awareness month, it is hard to run away from it...at the store, on TV, Runs/Walks, campaigns, I even saw pink bubble wrap yesterday?!?!?! This has mostly been positive for me, it is like everyone is out there supporting me (yes, once again my narcissism shows). But there is something therapeutic or "safe" knowing that for at least this month everyone has a heightened awareness of "the boobs"

Echo cardiogram

I had this test on Oct. 8th. It was essentially the same as when they did my baseline test before I started chemotherapy. That is good, no heart damage from the meds yet. The herceptin's (I start this in Nov) biggest side effect is heart damage.

Mammogram

I had this test also on Oct. 8th. The area where my cancer was first seen on the mammogram was still present. Doesn't mean the cancer is still there, could just be "scar tissue". We won't really know about any remaining cancer until we get the pathology report after my surgeries. No new areas were found in either breast.

Oncology appointment

I had this appt. on Oct 15th. The Dr. reviewed the above tests with me, told me my blood work was good, and basically gave me the thumbs up to proceed with surgery. We set the date when I would start infusion therapy again, November 12th or 19th (I can't quite remember). This will be the herceptin, it is kind of like chemotherapy but is supposed to much better tolerated. It is called target therapy and will target a certain "part" of my cancer. I will continue this every 3 weeks until June 2011.

Cancer walk

Oct. 16th - I think I heard that there was over 4000 people that showed for the walk. It was quite amazing and a great day to be outside walking with friends and family. Although we weren't able to stay together as a group, I so much appreciate all those folks who walked to support me! All 4,000 of them : ) Oops there was my narcissism again!

Surgery appointment

I was lead to believe that going to schedule my surgery would be a piece of cake! WRONG! I have been counting down the days until this appointment, ready to finally get the date so I could move forward with all the planning and details. I left with Nothing and did not find out the date of my surgery until Thurs. Needless to say it has been a bit of a sad, angry and stressful week for me.

Surgery

My surgeries are scheduled for November 2nd. I will be have my ovaries removed, double mastectomy, and an axillary dissection of my lymph nodes on the left side. The plans are for an overnight stay and I am planning on taking off work through Nov. 26th.

I can't really begin to process all of this surgery business. Today was Jaxon's birthday and tomorrow his party. I will focus on him this weekend and begin to prepare myself mentally, emotionally and physically next week.

Rash

I have broken out in a rash all over my body. I have had this rash two other times over the last 2 years. Yes Dr. Kukal, I suspect it might be stress related!

I will try to do better with my postings. Good evening all and thanks for the continued support

Side effects?!?!

Was I talking fondly of side effects in my last post? Well today I am cussing them. Friday afternoon after I thought I was in the clear, the evil mouth sores took up residents in my mouth once again. The dreaded, blasted evil mouth sores..... I will definitely not miss them!

I really wanted to post some pics that were taken on the last day of my chemotherapy, however, as usual my computer appears to be out witting me. Were is Shane when I need him!

This Friday was a great day and it was nice to know that it just wasn't an off week and somehow it did feel different. Jaxon had his BIG trike a thon at school and we went to a high school football game.

I ran into a friend over the weekend whose battle with cancer is much more of a struggle than mine and my dad's cancer continues to spread. Although I appreciate all the continued prayers and good MoJo, I know these folks need the prayers much more than I do.

Moving forward!

As I am making it through these side effects for the last time I try to reflect on the journey. The side effects will soon be gone and then I will have something else to focus on or even worse, nothing to focus on. I am so ready to get this horrible taste out of my mouth and yet I know in a very short time I won't even remember it. I will be glad but there is something about remembering that is important to the process. There is something about getting treatment and moving forward that is healing and hopeful. I know that I am on a much needed and deserved break. I know my body needs to recover and prepare for surgery. The majority of my body and mind is so excited about the next month, looking forward to doing things and not worrying how I am going to feel. But there is a very small part of me that feels a little stranded, a little lost. The part that needs a plan, needs something to check off the calendar, maybe the part that needs to feel the side effects to be re assured that we are moving forward.

Ok, that was deep enough! How about a shout out to my friends, family and even strangers who helped to celebrate my last day of chemo! I was greeted as I got up wobbling from the chemo chair by a mob of smiles. Nancy had lead this awesome group of people to what really is a quiet, no kids allowed area. That of course did not detour Nancy and I love her for it! The hugs, the smiles, the kind words, and the gifts were so much appreciated. I felt so looped up, I hope I didn't do anything to silly.

15 down and 1 to go!

It is hard to believe that 8 months of my life has flashed before my eyes - with the main focus of my existence being to make it to the next day. To make it through each side effect as it either knock me on my butt or just annoyed the the piss out of me. Marking off each chemo on my calendar, holding my breath every Thursday until I got the results of my blood work, and counting down over and over how long this was going to take. One more to go, it is so hard to believe that time can move so fast and yet so slow at the very same time.

We went to St. Louis this weekend. We had such a wonderful time with our friends. I am blessed to have so many people around, who have supported me through this journey.

Where to start....

I saw my Dr. on Friday prior to chemo. We have some tentative dates set, which gives us a better idea as to when the surgeries can take place. I have chemo the next two Fridays, that is it, all done! Then I will have a 2 week break. Following that, around Oct. 8th, I will get another mammogram and an ECHO. I then see my Dr. on Oct. 15th for a follow up. If all is good at that time then I will be cleared for surgeries. I will have to get with my surgeons to get the final details in place. But looking like the end of Oct.

My mouth sores were bad again so they took me off my oral chemo medicine for another 7 days. When I go back on it they are reducing my dose to 1000mg (one less pill a night). I will have to keep taking this until the day before my surgeries.

I ended up in Urgent Care yesterday. It appears I got something in my eye while doing yard work. It started hurting around 1pm and at 6pm I decided I had had enough and called nurse on call at St. John's. She recommended Urgent Care and sure enough i had got a cut on my eyeball. They gave me some medicine and told me to stay out of the sun, no TV, no computer, no reading for 24hrs. Well I have mostly followed the rules. It feels much better but I am a little worried about the fluorescent lights at work tomorrow. I have a patch, just in case. Won't I be a site...a patch, a bandanna, .....aahhrr Matey!!!

Words for the day

Caring Coworker (thanks)

Word for the day!

Mouthsores! 4 to be exact

How to spend a Friday when you're not getting chemo!

One more to go in Round #3

I have made it through another chemo session. 4 more to go, very exciting to most of my body except my breast which are starting to FREAK out! Today I experienced an increase in anxiety realizing how close I am getting to mastectomy time. I started re-researching all the statistics trying to re assure myself that double mastectomy is the way to go. Still working on re assuring myself!

This weekend was better than last weekend. Not as tired as the weekend before. My face looks horrible. Does anyone remember the guy in the movie Hellraiser, that is kind of how my face looks. Ok, well I just looked up a picture of the guy from Hellraiser and my face looks nothing like that (he has pins sticking out of his face) but that is how I feel so I am going to stick with that description.

I have been taken off my oral chemo for the week. They are trying to get my mouth sores under control. I still think they are related to my infused chemo. They seem to cycle with when I get that medicine not the oral medicine that I take everyday, but I guess we will see what happens on Wed./Thurs., that is when I usually get them.

Overall, it has been a decent Monday and I am looking forward to tomorrow, hoping my mouth quits tasting like rust. Doesn't really taste like rust but it has a nasty taste and the taste of rust seems comparable to what I have been tasting for the last 3 days. It will be over soon, usually by Tues./Wed.

What in the world am I going to do when I don't have side effects to guide my days!

Round 3

I have started round 3 and without complaining too much it has been a crummy weekend. The usual side effects but a little more tired and nauseous than round 1 and 2. My face is all broken out and I even took Tylenol PM both Fri and Sat. night. I thought this helped with the rash the last time around but rash is here is full force and I had a terrible sleep Friday night. I have new medicine that I get the privilege of taking for the rest of my chemo to try and keep away the mouth sores.

And a good note the Dr. says the tumor is barely palpable. That if you didn't know it had been there you probably wouldn't be able to find it at all.

I thought I would post some pics. I feel like all I do is complain on this blog but hopefully these pics will show that all is not that bad.

Misfits

Picture this: I bald women walking her overweight, arthritically stiff dog. Walking beside a women who is in a brace from her wrist up to her shoulder. That was us last night going for our little walks. I am sure we looked like misfits!

My wonderful sister in law took care of Jaxon all day yesterday and still has him today. It has been such a big help and we are so grateful for her assistance.

It has been interesting switching roles with Jen for awhile. She has been taking care of me for 6 months and then last year with my hysterectomy. It has been amusing and also a learning experience.

On the non constructive side of things I have thoroughly enjoyed every minute that I have been able to say "see, I told you so, know you know what I mean about........." Luckily Jen is on drugs so she has mostly found this amusing.

On the constructive side of things I have been enlightened on the role of caregiver and hopefully I will be a better patient, especially when I have my mastectomy.

Jen is doing overall good. She is in pain but she is being a trooper. I am very impressed with her. She has already done her exercises today and we have taken a few short walks since we have been home.

I am doing overall good. I feel good but have mouth sores in my mouth and all over my lips. I am using my medicine but they aren't going away. I feel like my lips have been "Botoxed" I am actually resting more taking care of Jen than I usually do when I have chemo. I feel good enough to get chores and projects done, take care of Jen in between and then I am even finding some "me" time. The moral of the story: In order to take care of myself, I must first find someone else to take care of!?!?!?!

Plastic Surgeon Visit

Although I have been looking forward to getting information, I have been dreading this appointment. I am not sure why. Maybe the stereotypes in my head about seeing a plastic surgeon and vanity. Maybe the fact that it was the last Dr I am seeing before I have to make the decision about my surgery.

I must set the stage for this appt. so that everything to follow makes since. On Wed. mornings on the way to work, I often stop by the gym and let Jaxon visit with my friend Melissa while she is teaching a fitness class. Well, little did I know that both the Dr. and the nurse I saw today are in that class.

The first thing that they both say to me when they walk in the room is in regards to Jaxon and the morning workouts. The first thing that goes through my mind on both occasions has a little to do with overexposure of my body parts to these women and the chance that I will be seeing them both in the morning! Luckily, before I run out of the room I am able to reassure myself that we are all healthcare professionals and it is not really that big of a deal.

The appointment went great. Both the nurse and Dr. were compassionate, respectful and knowledgeable. I was able to get all the information I was hoping for.

All along I have not been for the option of using my own tissue and muscle for reconstruction. The Dr. gave me 3 good reasons why she felt that this might not be the best option for me. It exactly lined up with my thoughts.

We discussed the option of implants and also the option of mastectomy without any reconstruction with the option of implants in the future if I decided that I did not like that decision. There is also another procedure that they are doing at Wash U that I might decide to at least look into further. I need to try to get some more information regarding our health insurance (it will be changing next year) and cost but I feel like I have a lot more information to help me make my decision.

No decision yet, but a little calm as came over me and I feel confident that I will be able to make the best decision and that is something I have not felt since I found out I was going to have to have a mastectomy.

I am going to try and step away from cancer for a week and focus on Jen and her surgery. Just a small hiatus but I think the half way mark is a good time for a "break"! I just hope my body, health and side effects all cooperate with me.

1/2 way point!

6 down and 6 to go! I really can't believe I have had 6 rounds of this medicine already. It seems to be going by so fast. The side effects linger but all just annoying, not devastating. The new thing is that the skin on my heals is cracking. One crack is rather deep and hurts a little. I have decided to really try and take them up on their recommendation to not go around barefoot. I love to go barefoot, this is a challenge for me. What am I saying, anything that someone tells me I should do that I don't want to do is a challenge for me.

I see the plastic surgeon tomorrow. I have a list of questions and I hope to get a lot of information to help me make my surgery decisions.

I had a dance party with Jaxon tonight. He is quite the dancer : ) He was Will I Am and I was Fergie (Black Eyed Peas). Luckily Jen cut me out of all the video clips she took. Lucky for you and me!

I will try to post about the plastic surgeon appt. soon.

RIse and Shine

Good early morning! It is the morning after chemo and I have essentially been up since 2 a.m. Between my mind and body not wanting to be still and shut off during the night on the Fri. and Sat. after chemo, I don't seem to get much sleep. Hopefully I can get a little nap in today and tomorrow. Yes I said nap!

5 chemo treatments down and 7 to go! Almost 1/2 way done. This should make me excited but all I can really think about are the surgeries ahead of me. I have come to terms with getting the double mastectomy and oophrectomy (?) but I cannot make up my mind about what do to after that.

As I have stated before the side affects are mild with this chemo, relatively easy to manage. I took Claritan for 2 days after chemo last week and my acne face rash didn't get as bad. I also have saline mist for my nose which helped with the bloody crusty nose.

I wanted to take a moment to list all of my side effects. Hopefully not to bore you, but this is also sort of my dairy and I just wanted to have it listed out so I could remember.

Side effects:

Acne face and chest rash

Nose irritation with some bleeding

Mild nausea

Bad taste in throat (Day 2-4 after chemo)

Mouth raw (Day 3-5 after chemo)

Mouth sores (Did occur at week 4)

Striped nail beds

Neuropathy of hands (Day 4-6 after chemo, did not occur after treatment #4)

Dry and cracking finger tips

Dry and cracking lips

Difficulty sleeping (Day 1-3 after chemo, probably from steroid)

Muscle fatigue with activity (mostly occurs with strength type activities)

Tender to touch on back of neck and shoulders (Day 2 after chemo)

Intermittent pain in thighs, hips, shoulders and back (Usually more towards Day 5-6 after chemo)

Hair stopped growing again (Shaved it off again)

I did have a rash all over my body for about a week but I think it was a reaction to the sun

I wanted to thank Nancy (Jen's mom) for taking me to chemo last week. I was I little worried about taking Nancy with me. She does not sit still very well and there is a lot of sitting at chemo. She did great, only had to get up and take a walk once. I have to say it was really nice having her with me. She bragged on me like one only wishes their mother would brag. She really made me feel good about myself that day and a daughter needs that on occasion.

Jen has scheduled to have shoulder surgery on July 30th. That should be my off week from chemotherapy. She has a partially, but significantly torn rotator cuff (supraspinatus muscle). Please wish us luck as we tackle this in our already crazy life. I just hope we can keep some since of normalcy for our little guy. I often wonder how all this will effect him. He has been through a lot in his short 3 1/2 years of life.

Great weekend off ?!?!?!

I have made it through 1 cycle of chemo, only 3 more cycles 3 rounds to go (that is 9 left). Having it 3 weeks in a row really made it go by fast and I was so happy my WBC counts stayed up.

I was so looking forward to last weekend, chemo free and a four day holiday weekend. It started off great. Friday was the first "me and you" day that Jaxon and I had had in a while. We went to Chuck E. Cheese, had lunch together, went to the pet store then adopted a puppy from the no kill shelter (not sure how that happened). Friday night we had a get together with the Guat boys which got a little crazy and ended with a bunch of boys skinny dipping!

Saturday we headed to the lake and had a great day. Jaxon hung out with his lake buddies, mostly a bunch of 9-13 year old girls. He will appreciate this attention a lot more in a few short years. Although I must say as they all hugged him Sat. night he seemed to have them wrapped around his finger! My only issue was a few mouth sores.

Sunday I woke up a little congested and a lot sore. This progressively worsened as the day went on, until I started to run a very low grade fever. I also started to break out in a rash. We had plans to shoot off fireworks so I took a Tylenol and pretended I wasn't sick the rest of the night.

Unfortunately this all caught up with me on Monday. I woke up congested, sore, sick at my stomach and with a rash over most of my body. I spent most of the day on the couch recuperating.

Not the ending to the weekend I had hoped for but I think I am feeling better today. I think the rash is a reaction to the sun, and the other is probably a virus, probably picked up at Chuck E. Cheese. Really I don't know how I got sick, but Jen (The Germ Police) was not really happy about me going to Chuck E Cheese.

I am hoping for a good start to my next cycle of chemo which should start this Friday. We are picking up my niece and nephew on Thurs. and I really won't have time to be sick. Wish me luck.

Oh and a little shout out to my friend Cathy who took me to my last chemo treatment. Not only did I appreciate her driving me around but a had a great day out with one of my best friends.

Foobs!

Does anyone know what foobs are? It is breast cancer lingo for fake boobs, not implants but prosthetics. Isn't that funny! I have began my journey into researching and exploring what to do after the mastectomy. This is just one of the many new terms I have learned! Oh and they aren't really called prosthetics (which I prefer), they are called breast forms.

I am 100% sure I will have my ovaries removed, 99.938473% sure I will have a double mastectomy, 80% sure I do not want any type of reconstructive surgery (taking skin and muscle from my stomach or back to make breast), and I am about 50/50 trying to decide between having no surgery (using breast forms) or implants.

I have finally found some good forums out there discussing the subject and have stumbled upon some other good resources. Lots to think about and I am sure I will post more as my journey moves forward.

I can't believe I have chemo again in 2 days, if my counts are good. That will be 3 down (probably jinxing myself) and then already time for a week off! I have to say I have been tolerating this so much better. I was telling someone that this time the side effects are more like inconveniences. I did get a nice rash on my face and chest this week, but it seems to be getting better. Having chemo 3 weeks in a row really makes it seem like it is zooming by.

I wanted to post a picture of the medicines I will have to take in a time frame of less than 12 hours. I will take them tomorrow night. The little white ones are the dexamethosone I have to take the night before chemo and the neon orange ones are the 5 chemo pills I have to take EVERY night.

Catching up

Yes I blog, but I am not very good at it. Once again I have fallen off on my blogging updates. I was going to blog Thurs. night but I was sad and trying to avoid the inevitable clock ticking down the minutes until I had to start taking my pre meds. I was up at 4:30 am and couldn't go back to sleep after taking my 10 dexamethasone.

My Drs. appt. went well. My tumor is getting softer and is now immeasurable. When I mentioned to the Dr that I was planning on going to Poplar Bluff this weekend for my Grandma's 80th Birthday party, I was told, no hugging or kissing my relatives and stay away from the mosquitoes. I guess Jen will be getting out the Haz Mat suit for the weekend.

I did have a reaction to the IV Benadryl (sleepy, spinning head and restless legs) but I didn't have a reaction to the Taxol (chemo med). It was probably worst chemo session I have had but I was so out of it I really don't remember much. I started the Lapatinib on Friday night (oral chemo). I am so happy to report that I am really feeling decent. A few minor things but nothing at all like the last medications. I am so relieved that this has started out so well. I know things could get a little worse as I continue through my cycles but I have a renewed sense of hope that I will make it through these medicines too.

Countdown to chemo - 2 days to go

Well it is time to get my blood work done. Tomorrow morning I will get my blood drawn and meet with the lady who will "hook me up" with my oral chemo medication (Lapatinib). Since this is part of my clinical trial I actually get it free. WOOHOO, you shouldn't have, just what I always wanted. Have a mentioned that I have to take 5 of them a day!?! I have enjoyed my freedom but now it is time to get back to being out of control. Out of control of how I react to the medication, out of control of how feel, out of control of my schedule, out of control of all the medication I have to take to counteract the medicine I have to take to live, out of control of being in control. If you know me you know this is the hardest part for me.

Countdown to chemo - 3 days to go

Was able to get my ECHO done today. Should get the results in a few days. The tech said my pictures looked good, assuming that is a good thing ! I just kept thinking maybe my heart is very photogenic : ) I am not sure how I am ever going to let my hair grow back. Every time is starts looking "fuzzy" I begin to feel very unkept and I have to shave it off again. I keep wondering if it would actually grow out. They say no, but sometimes I wonder. My plan will be to let it grow back when I have my surgeries. I figure I will feel like crap and probably not care about my hair. Hopefully I will get past "fuzzy" before I start caring about how I look. And really after I have just got my boobs cut off, what kind of a priority will unkept fuzzy hair be?!?!?

Countdown to chemo - Phase 2

Well my hiatus is over, 4 days till I start phase 2. It was good while it lasted : ) I am trying to gear up for whatever is ahead of me for the next 4 months. Once again hoping for the best, preparing for the worst. I have twelve rounds of infused chemo (3 weeks in a row with one week off) and daily oral chemo (5 PILLS a day). All sounds so very exciting! I got a call today that it is time for my echo (make sure the chemo isn't destroying my heart) and I have to get it done before chemo on Friday. Gives me a lot of time to get that arranged. OK destroy is a bit of an exaggeration, checking for any heart damage is more appropriate. And they do the echos literally 500 ft from where I work so it shouldn't be that hard to get arranged. I think I am just a little bitter about having to be done with my hiatus. I am going to try to write everyday this week. If I could only figure out how to blog on my fancy phone!

Oops forgot, I saw my surgeon

Lets see, this week as been mostly uneventful in regards to "cancer stuff". I started off with the raw sore throat and then transitioned into my gums and the roof of my mouth being sore and swollen. Well the mouth soreness was a bit bothersome but I forced myself to use some medicine to numb my mouth so that I could eat comfortably. It is mostly gone now.

I did see Dr. Shultz last Friday (I think I have kind of been blocking this visit out of my head). He is my surgeon. He continues to recommend the double mastectomy, secondary to my positive genetic testing. He was throwing around numbers like 70-80% chance of having breast cancer again without this type of surgery. I think that is a little high based on the research that I have done but I know the chances are really high. I know that probably in 20 years, after more research there will be a better treatment option but I also know that right now this is the best they have to offer me. I really don't think I want to go through all of this again The sad thing is just because they cut off boobs and take out my ovaries, I still have a increased chance of colon cancer and melanoma secondary to the genetic testing. But one thing at a time, right?!!?!?! So now it is time to decide on reconstruction, implants or nothing (prosthetics). I see the plastic surgeon at the end of July.

A quick thanks to all who continue to send me good mojo and to those who help us out from time to time and of course my coworkers who "protect and care for me" when I feel like hell at work.

Who has cancer?!?!!?

Well finally started feeling normal on Friday. Still a little dizzy, throat hurts and still having an aversion to drinking liquids but mostly back to normal. We had a great weekend with Jaxon. All the medicine in the world can't make me feel as good as being with my family, out in the sunshine, watching my boy having fun! He loved being sprayed with the power washer (safe distance of course), Jen found him a turtle he carried around for an a hour, and as you can see we bought a Slip and Slide! Good times had by all! Probably did a FEW things I wasn't supposed to this weekend (spraying my skin off with the power washer, being around the bacteria, mold, etc. as I worked on the pool and power washed) but I think it was probably worth it. I will probably be a little sore tomorrow, I can handle that. A few pics of the Slip and Slide.

Chemotherapy, Cravings and Relay for Life

I have completed leg one of this race! I have 4 weeks until I start the next medication regimen. I didn't get BAD sick on Friday, Jen and I actually went out to the the Relay for Life on Friday evening. I was hoping for a little inspiration and some good vibes and did not leave disappointed. I have been relatively active this weekend. Probably doing too much, but I haven't felt horrible. I was able to get my WBC shot on Sat., instead of having to wait until Monday. I really didn't get sore from it this time. My cravings this time haven't been so specific, so that has allowed us to eat a little more normal. No fried pickle cravings, so far! Craving creamy, cheesy things like pasta and pizza! I am very jittery today, I don't think I slept very well last night. I feel very wired, the way I did after my very first chemo treatment. The nausea is present but I don't seem super sensitive to EVERYTHING this time around. Probably I good thing I didn't go to work today. I feel like pulling my hair out (if I had any) and running around in circles. Not the best professional behavior! I am posting a few pics. Jax and I taking a nap after chemo on Friday and then some from the Relay for Life

Getting Away

We just got back from our little family vacation to St. Louis. I was really looking forward to getting "away from it all", but I really didn't get away from anything. Usually for me when I have stress going on in my life, it is usually caused by other people's issues and getting away can really help. This time it is me that is the stressor and well, I took myself, my bald head, my cancer with me. So I really didn't get away from anything, but we did have a great time. It reminded me that I can't really run away from this one but it also reminded me that I can do this my way!

We went to a lot of neat places and had good food along the way. I think by far our favorite place was the City Museum. I think because while we were their we witnessed Jaxon overcome many fears and have a crazy good time. I also ran up and made it to the top of a 12 foot near vertical wall (looked kind of like a skateboard ramp). I saw teenage boys unable to do this so I have to say that it made this 38 y/o cancer pt. feel really good!!!

Jen made a point to take some pics of Jaxon and I, so I thought I would post a few pics from our trip.

Only 3 days to my last treatment of AC. I must say I am ready to get it over with. I do not look forward to all the side effects but this will be the last time to deal with this. I will have 4 weeks off before I start the first cycle of my next medications and a whole new list of side effects! I keep trying to remind myself that there is light at the end of this nasty, yucky tunnel!!!!

To tell or not to tell?

One of my frequent dilemmas is when I run into someone I know and I wonder if I should blurt out "I have cancer!" It is really not in my nature to complain. And in my head, blurting out that I have cancer falls into the complaining category. So I just chat with whomever it is that I have ran into, waiting and kind of hoping they will say "hey you don't have any hair, what's up?" : ) Knowing that maybe they are thinking "Um, something seems wrong here, does Dana not have any hair. I wonder what is wrong. I hate to be nosey and ask" Then we finish our conversation. Then Jen always says "did they ask?" I say no and then we basically have the above conversation, and I regret not telling them. In my mind I would much rather someone know what is going on then to have them wonder. It makes me stressed for them. This is a little narcissistic, assuming that they spend a great amount of their time pondering my baldness. This again happened today. I ran into one of my old coworkers whom was pregnant. I ask her if she was pregnant and she said "no its a tumor" That could have been a great opening to my cancer but I didn't take it. Oh well.

I was a little disappointed that I still had a little bit of dizziness Fri. into Sat. I had hoped that working so hard earlier in the week would have helped with this but maybe it has nothing to do with what I am eating or drinking. I do think overall I felt better from Thurs. on. My throat is only slightly raw and I have just been a little tired. So hopefully I can keep the mouth sores subdued next week and I will be on my way to my one relatively normal week before we do it all over again. My next chemo should be May 14th.

Only one more time with this chemo medicine. It is a good thing, because anyone in their right mind would not put themselves through that kind of hell too many times. I am already having to prep myself for one more round. Anytime, I think about chemo, the cancer building, try to read a book about cancer, etc., I get a little bit queasy.

I have been wanting to post some new pics but tonight I realized that I really don't have any pics of myself. I will work on this!

Checking in

It seems that right after my chemo, the time when everyone is wondering how I am doing, is the time I find it the hardest to post. Those first few days after chemo each seem to bring a different set of challenges and it is all I can do to make it through the days. I will say I am doing better today. The nausea and fatigue are lingering and my throat is starting to get raw but things are getting better. The nausea has been the toughest this time around. I have been so sensitive to everything. It is hard to describe how I have felt, like I have been all consumed with how to make it hour by hour. I have been trying to avoid anything and everything that could make me nauseous, which literally is anything and everything. Sometimes I could think of a food I actually wanted and that would make the nausea go away for a few hours. But sometimes it is hard to get what you are craving (Steak fries when you are at work). I am proud of myself with my fluid intake, lots of smoothies. Of course, now that my throat is getting raw and I am moving towards my "low white blood count time" I need to avoid citrus fruits or fruits that aren't peeled. That kind of limits the kinds of smoothies I can drink. Hopefully I will be able to drink water again in the next few days (right now water makes me gag!) So I am doing alright, hoping that all the effort I have put into the last 5 days will make the next few days better. Yes I realize this post is disorganized but I just wanted to an update posted.

Friday was better!

Dr. visit: tumor has not really decreased in size but is "crumbling up". This is good and means the medicine is working. Dr. decided to give me another nausea medication by IV while I was getting chemo.

Chemo treatment: Everything went about the same but the new medicine made me tired and off balance.

Friday evening: NO HEADACHE and only mild nausea. I thought I might vomit a few times but I didn't. So much better than the last 2 treatments. I was very tired and kind of out of it all night, but I will take that over writhing in bed with a headache and nausea. I even had a small plate of Lo mien noodles last night. It seems that pasta is currently my craving!

Sat morning: I am a little tired and a little queasy but doing ok.

Here we go!

Blood work this morning, and the best I can tell all the counts are good enough for chemo tomorrow. I have ALL my meds laid out for tomorrow, along with my instruction sheet of what to take when.

I think I have been a little anxious today, just trying to search for an emotion that works for how I feel. Happy that my counts are up, sad because I will probably be really sick tomorrow (a kind of sick for several more days), optimistic that things might go better this time around, nervous about seeing if my tumor as shrunk anymore, relieved that I will get another round of medicine to fight my cancer and distracted and consumed with all the plans and options I have to make things smoother this time around......to name just a few of the emotions!

Random thought for the night. When they said my hair would fall out I figured it would all just be gone but I keep shaving it and patches keep growing back. It is work to keep it shaved and then I wonder if I am just a girl with a shaved head. Maybe I should quit shaving it and see if it grows back. Jen quickly reminds me of the bald patches were the hair isn't growing back. I guess I just keep shaving it for awhile!

Chemo Countdown

Wow, time has flown by this cycle. Only 3 days till blood work and 4 days to probably/possibly chemo. I am trying not to assume I will have chemo on Friday, even though I had the "booster" shot this time. I am turning over a new leaf of just taking things as they come........ya right!

I am trying to get prepared for everything I expect to happen this time around. The nausea, headache, foggy head, fatigue. I have some ginger pills I will try this time. I am taking off on Monday so that I can rest and recuperate. I need to figure out how to eat and drink more consistently the first 3-4 days. I am preparing for a bad week, planning for a better week and hoping for the best!

The blood work I had that nearly killed me a few weeks ago, it all came back normal. No further follow up. So I have "hypoglycemia" for unknown reasons, with no answers as to what to do about it. That drives me crazy!

OB GYN

First of all, let me just say, I love Dr Burke! We spent as much time chatting and catching up from last year (the dr. who did my hysterectomy) as we did talking about my ovaries. He has the perfect combination of straight shooting and kindness to paint a REAL picture of what is going on. His agrees with everyone else's recommendation to get my ovaries removed. With the positive genetic testing it really increases my chances for ovarian cancer and the treatment and survival rate for ovarian cancer aren't good. He can do a same day laperscopic (sp?) surgery with about a week recovery time. It gets a little more complicated because this will probably piggy back with my mastectomy or maybe even be done on the same day. But I think this surgery is the least of my worries. Now this will put me into surgical menopause which might be hell. But he also says the chemo is probably zapping my ovaries anyways and it might not be that drastic of a change. I might already be going through a more gradual menopause right now. Over all I felt really good about the appointment. I meet next month with the surgeon who will do my mastectomy and he will at that time refer me to a plastic surgeon.

2 great days!

Just what the Dr. ordered! Two awesome days spent with friends and family. The weather was perfect and we spent the majority of the weekend outside. Lots and lots of vitamin D! We took a day trip to Eureka Springs on Saturday with our friends (Brian, Dewayne, Gus and Tavo). I rocked the bald all day. Now you never know what you might see in Eureka, and I blended right in. I felt like a girl with a shaved head instead of a girl with cancer. It was nice, just what I needed. Sunday was a picnic at the park. Grandma Nancy and our friend Max come along. We had yummy food and lots of fun with the boys.

Tomorrow I see the OBGYN regarding my ovaries. I have lots of questions, which I should probably get written down. I will update ya'll on how it goes.

Thanks for all the support you give me each and everyday, especially my coworkers. You guys really kept me going last week. I think this week will be better!

The Week in Review

The word if the week - TIRED

Monday: Got the "WBC booster" shot. Nauseous, queasy, no appetite, tired, very foggy in the head. Could barely get my workout in. Craved fried pickles (thanks again Jen!) , went to bed at 6:30pm.

Tuesday: Sore all over (assuming from the shot), nauseous, queasy, no appetite, very foggy in the head until around 3:00pm, struggled through workout, felt very weak, shortness of breath going up stairs.

Wednesday: Queasy, getting appetite back, still a little sore, starting to get "film" in mouth, still feeling weak during workout, shortness of breath going up stairs.

Thursday: sore throat, film in mouth, feeling lightheaded, a hunger sensation that I can't seem to satisfy, felt good working out but then hit a "wall" 1/2 way through and was tired the rest of the day.

Friday: lightheaded, film in mouth, sensation of a lump in my throat.

The story of the week: Today I went to see my PCP regarding my hypoglycemia. Jaxon went with me. The Dr. ordered blood work and sent me to the lab. 1st stick, no vein. Decided to try my hand, 2nd stick, ears ringing, about to throw up, felt like I was going to pass out. The guy told me to stick my head between my legs as he was still trying to get the blood out. All I could think of was who was going to watch Jaxon when I was passed out. He finally stopped (my blood was coming out super slow). I told him I needed to lay down. He directed me to a room with a table. Has I stepped into the room, everything went black. I grabbed for the table and sort of remember throwing myself unto the table. Don't think I passed out but feel like a lost a few seconds of time. Finally reached down for Jaxon hoping he was in the room with me. After some cold packs and orange juice finally started feeling better. The dude ask if he could poke me again. I am not sure why I said yes, except for the fact that I didn't want to be a quitter. 3rd poke, blood still super slow. Finally guzzled a bottle of water and he gave up and sent in 2 ladies who were successful. I left with 4 pokes, tape all over my arm, and I poor little boy holding my other hand. Jaxon was such a big boy during all of this, he actually didn't seem to grasp what was going on. It was a really scary event for me, knowing that I put him in that situation.

Not sure what tomorrow will bring. I am in need of a good day. This week has been really hard. I am actually realizing that I have cancer, I mean that I feel like I am sick and that my life is slowing changing into the life of a sick person. It has been a struggle to make it through everyday and I cannot imagine dealing with this for another year and a half. Just need a good day!

Let's see if this will work

Here is a link to the Hat Party Album

http://photo1.walgreens.com/thumbnailshare/AlbumID=2998697001/a=3443413_3443413/otsc=SHR/otsi=SALBlink/COBRAND_NAME=walgreens

just highlight, copy and then paste into "http.www" line at the top of your page.

Sorry to leave ya hangin'

Sorry I didn't post on Thurs. My blood counts were back up. They were at 3.0, only needed to be at 1.2. YAAAAAAA bone marrow, way to do your job! Unfortunately, my glucose level was down to 47, last week it was 58. The normal range is 70-100ish. So now I get to go see my primary doctor about these episodes of hypoglycemia.

Saw the oncologist Fri. before chemo. I will start taking a shot to help my counts stay up. I will take 3 of them, one this Mon. and then one after my next 2 cycles of A-C. This shot stimulates the bone marrow to do its job. Its main side effect - bone pain. YAAAAAA!

My Dr. also said that my tumor has gotten a little smaller. Now this is measured manually, no fancy tests, but I will take her word for it. As long as it is getting smaller then the chemo is doing its job. We also got into a humorous fight about how much weight I could lift when working out. If you see me over the summer and I look scrawny, you will know why!

I took the new expensive "magic" pill yesterday, but I still got sick. It was almost like clockwork to the last time. I will say it wasn't has bad, maybe 50% as bad as last time. But the time frame was just the same. No vomiting this time. I also think I stayed calmer this time, because I knew what was going on and I knew it would be over in about 5 hours. I, of course, think staying calm helped just as much as anything.

That is just about all I know, I hope to get some sun on my bald head this weekend. Yes I will be using sunblock. I think I am reading to start Rocking the Bald! I really don't mind my bald head, Jaxon tries to show it off to all of his friends. so what the heck. OWN IT I SAY!!!!!

Enough is enough

As much as I had quickly became addicted to my nightly shower ritual of seeing how much hair I could rub off my head. (It was a fun way to pass to time but dang I have a lot of hair, even if it is now only 1/4 of a inch long.) Saturday morning I handed Jen the clippers and said shave it off! So I am now bald, besides the stubble that has yet to fall out.

MY BALD OBSERVATIONS:

1. My head is cold.

2. I can feel the wind on my head as I walk.

3. Little kids really notice when a girl doesn't have hair, even if she has a hat on.

4. It is easier for the wind to blow off your hat (very windy this weekend).

5. I have a mystery scar on the back of my head.

6. People like to smile at you with that "oh you poor thing" smile.

7. Hats make my head sweaty, even though it is still cold.

8. Hot Topic has very cool bandanas.

9. I must learn how to scratch my head gentler.

10. Jaxon and Jen love me no matter what.

Slapped once again!

One must agree that I have had a few slaps in the face over the last few months! Many blessings, lots of good news, but a few bumps along the way. I have dealt and moved on through all of these and I know that I will move past this one. However, today when I got the results of my blood work and saw that my counts were too low, I nearly lost it! Not to mention that this was at 9am, I put a call immediately into my Dr. to find out for sure what the counts meant, and they didn't call be back until 2pm. That was 5 hours of thinking I probably wouldn't have chemo, hoping that I was somehow wrong, WAITING, and just not knowing what my plan for Friday was going to be. If you do not know me very well, you might not know that I LOVE plans and LIVE for plans, not having a plan, having an unexpected change in my plan this DRIVES ME CRAZY! Needless to say, I was a little bit crazy today and A LOT SAD. So no chemo tomorrow, I will get my blood checked next Thurs., if my counts are back up then I can get chemo next Fri. Oh, and don't think I didn't have a calendar in which I had already written down the dates of every chemo appt. I was going to have through Sept.........these dates are now shot to hell! Side note - I did write them down in pencil......just in case!

Quick update and shout out!

So much for the buzz cut. My hair is officially falling out. Now since Friday I have been able to pull at it and it would come out, but now I can basically just touch it and it is falling out. Kind of weird. You can easily see my scalp and I have a few little bald spots.

I get my blood work done tomorrow. My white blood cells have to be at a certain level for me to be able to get chemo on Friday. I am not sure how I will process it, if my count hasn't went back up, that will throw my whole schedule off. Yes, I know I shouldn't have the whole next 7 months scheduled out....but i do!!

I super big shout out to my awesome co-workers who all wore hats yesterday! It was my first day to wear a hat to work. What amazing people and what great support they continue to provide.

New New Haircut!!!!

Weekend in Poplar Bluff

We took a quick weekend trip to Poplar Bluff to visit family. Thought it would be a good idea to visit family while I was feeling so good. Well we had a good visit, but my "feeling good" took a turn for the worst. My 3 small mouth sores turned into 5 rather large sores and a swollen right cheek. My lymph nodes under my jaw become swollen and sore. Probably totally unrelated I had a horribly stiff neck most of the weekend with significant pain. Oh ya, my hair started falling out. So much for feeling good. At least we had a good weather on Saturday, unlike the weather in Springfield.

I made a quick trip to the Dr. today, since my mouth sores seemed out of control. Guess what, I received more medicine! I am actually happy about this medicine. Something to numb my mouth so that I can eat and another that will hopefully heal my mouth sores. The bad news is that this is probably a side affect of chemo which will likely continue over the next few months.

Since my hair had started to fall out I went all out this afternoon and got my hair buzzed off! If I can get my computer to cooperate I will put up a picture.

I DON'T LIKE MEDICINE!!!

I had a Drs. appt. yesterday. My white blood cell count was indeed low - 1.6 (Normal 4 - 11), as was my platelets. Actually most things were low but those seemed to be the lowest. They said that is what was to be expected on day 10 after chemo. They are going to get me another anti-nausea medicine to take the next time I have a chemo treatment. They MADE me start taking a anti-viral because I had a mouth sore (today I have 3). They MADE me start taking a antibiotic just as a precaution since my counts were so low. The antibiotic could make my Achilles tendon tear. Well that is more likely if I was over 60, but really a medicine that can make your "muscles break". That doesn't sound good to me. But I am being a good patient and taking my medicines....cussing and screaming all the way!!!! I have a rash all over my neck, chest and back, they didn't know why, it seems to be a mystery. Still have hair, well what is left of it after the BIG haircut. I little fatigued but besides that I am feeling good. My next chemotherapy session is scheduled for March 26th 10am. I will get my blood checked the day before and if my counts have went back up then we are good to go. I will also see the Dr. on the 26th. I have went ahead and scheduled an appt. in April to see an OB GYN to discuss having my ovaries removed. I have also went ahead and scheduled a follow up with my surgeon in May to discuss the double mastectomy further (he will then refer me to a plastic surgeon to discuss reconstruction options).

SHOUT OUT!!!!

I wanted to give a shout out to the St. Agnes 5th class and especially Klaire. What a super sweet girl you are Klaire for telling your class about me. I thank you so much for the cards and prayers.

White Blood Cells

Well tomorrow marks the 1st day of the NADAR period. Supposedly my white blood cells will be at their lowest for the next 4 days. I am dying to go get my blood tested tomorrow just so I can know what is really going on. It seems kind of random that I will just wake up tomorrow and have a low WBC count. Maybe I will but it sure would make sense to know for sure. But lots of things really don't make sense anymore, I will just wait until Monday morning and get my blood tested (when scheduled) and see where the WBC count is then. In the meantime...... NO GERMS PLEASE. Just in case :)

Other random thoughts:

I have this stupid port and it isn't going anywhere, and although it doesn't hurt, it sure does seem to get in my way!

My hair, could be falling out any day. Thought I was excited about this but this too seems a little random. Supposedly one morning I will wake up and it will just start falling out. Just seems odd. Have went from planning on getting a buzz to scheduling to get a "nice" short haircut. That way I am ready for it to fall out but if my hair decides to take its time I can enjoy a "cool" cut that I probably would otherwise never have gotten. I will have some clippers on standby when the time comes!

Lastly, good news, I was afraid Jen would bring home some kind of HAZ MAT outfit for me to wear to work tomorrow. But so far, so good. I will just use lots of hand sanitizer!

The Weekend

Wrapping up the weekend. Went much better than Friday evening. Overall just a little queasy and a little tired, more so yesterday than today. Was able to get out both days and enjoy the weather and some Jaxon time. Trying to watch what I am eating. Sticking with smaller portions, more "comfort" foods. Nancy (Jen's mom) made Shepard's pie, which was just what the Dr. ordered. Planning on heading back to work tomorrow with my THREE anti - nausea meds, hope to make it through the day.

No planned Drs. appts this upcoming week. Next Friday through Monday (12th - 15th) will be my NADAR time. This means my white blood cells will be at their lowest. Expecting Jen to all but quarantine me in the house during that time!

They say my hair should start falling out within 10 days, tentatively plan on shaving it next weekend!

The Evening From Hell!!!

First things first, probably a little silly but I made Jen take a picture

yesterday so I could post the not so scary "Chemo room". Everyone

was very nice. They tried to sing happy birthday to me, but I declined!

It did not hurt when they accessed my port. I had used topical

lidocaine on the port site an hour earlier. (Thanks D&T the press and

seal Saran Wrap, worked wonderfully). I was a bit drowsy with my

pre-meds (anti-nausea meds) and had a little bit of a sinus reaction

with my chemo meds. We were there about 2 1/2 hours. Left feeling

great.

Things took a turn for the worse around 2pm when I begin feeling slightly nauseous which led to

vomiting about 1 1/2 later. This was followed by 4 more episodes of vomiting and the most awful

headache I have ever experienced. This misery lasted to around 9pm when I was finally able to fall

asleep. Jen woke me up around midnight to take some more meds and I was feeling pretty good.

After that I woke up frequently, one of the meds I am taking is supposed to interrupt your sleep, it did!

I am feeling decent this morning. I am going to keep on top of my meds today and eat lots of small

meals and hope for the best.

Thanks for all the calls and text yesterday you are all amazing!