Sunday, May 22, 2011

Counting my blessings

I just had a moment 15 minutes ago where I was looking over at the baby monitor checking on Abby while she was napping and felt so very blessed. I am so blessed to have this wonderful family.  An amazing, supportive husband and two beautiful babies. My heart is so full. I think people hope for a life like this. I know I did for a very long time.  Despite having cancer I have been very blessed in this lifetime.  I am starting to understand more now about God giving you only what you can handle.  I wasn't able to understand it before because I was still so angry.  I feel that God wants me to be a beacon for SIDS and for breast cancer. If I am able to help others who have been affected by either of these traumas then I know I am doing honorable work. Then I know my life has a more wonderful purpose than the rewarding role of being a mother and wife.  Cancer you will not break me, cancer you will die and I will live. I will live a bigger, more passionate, more fulfilling life and you will be dead and gone.

 

Saturday, May 14, 2011

BIrd's Eye View

I had to take a break from the blog for a while and may still do so for the time being.  I feel like I was complaining too much and am really on a negative streak. I don't like that bird's eye view of things.  I need to find my happy place. I need to get a fresh perspective.  I am starting to feel better physically but I need to feel better mentally, emotionally, and spiritually.  They are all so intertwined.  I feel I have always been such an upbeat and happy person but reading back over my past blogs I realize I have lost that perspective. I could always find humor in situations and try to make lemonade out of lemons. I started out with such vigor to heal myself and rid my body of this cancer.  It has sucked the majority of my life force. I need some time to get back to that happy place. I've been battling depression since the surgery and I want to get out of it without the use of even more drugs in my body.  I am going to focus on what makes me happy and do only that for a while.

Sharon was telling me that there was another young mom that was diagnosed with breast cancer recently and she is 6 months pregnant.  If I were to meet her or anyone who was recently diagnosed with breast cancer I would probably tell them to expect to be rocked to their core.  Expect to be challenged with such intensity that you forget where you came from, who you are and who you want to be.  That the fight to beat cancer can be so physically, mentally, emotionally, and spiritually draining that sometimes you feel like you can't go on even when you see the happy smiles of your amazing children, spouse, family and friends. You have to continue to generate your own will to survive.  YOU have to do it. No one can do it for you. You must be a cancer warrior and battle your toughest demons.  I feel I am doing this. NO, I KNOW I am doing that. I feel I will be a stronger and better person for having fought this disease but it's not over yet. It's almost over but sometimes the end still feels so far. I know I will get through this but I want to find a way to cross the finish line with my wits about me too.  That will be the ultimate goal.  Things are starting to get better, I must trust that they are.

Until later...all my love, Jess
 

Sunday, May 8, 2011

Bleh

I don't like Mother's day. Holidays are for when you are well and have energy to spoil yourself and others. And with Holidays come expectations and I always (pessimistically) felt that if you have expectations you'll just be let down. I know how apathetic that sounds. It's like my birthday, the day is usually a let down. Anyway, I don't have a lot of energy to do things (for myself or others, I used to be so awesome in that department when I had my wits about me). Because of what is going on I do have a lot of guilt which I know I am not supposed to but I can't help it. It's a bad cycle. My poor mom and mother-in-law are over here taking care of the babies and I can't help. It really frustrates me. I wish I could honor them and let them know how much I appreciate them and everything they are doing. But what can I do? They look so tired.  Abby is precocious and Leo is a 21 pound sack of potatoes and everyone who is taking care of him is hurting their back.  I feel like when I say "thank you" the words fall flat and don't seem to be enough.  Thank you, thank you, thank you!!!  From the bottom of my heart I appreciate all that you do.  Mom's and Grandma's are the best.

The one thing I will say that made me happy today is that I used my good arm to hold the baby for about one minute and Abby for another minute later in the day.  I keep thinking how much I cannot wait to be able to hold them and squeeze them against my chest and give them proper hugs.  Hugs that only a mommy can give you.  My mom gives me those.  She always tells me "I can't get you anything" but what she gives me is so much better than any thing you could ever possibly buy. In fact it isn't anything you could buy. She loves me and she takes care of me like only she can.  She does her very best and for that I am so thankful.  I wouldn't be who I am without her. I couldn't be healing myself without her. Mom, I love you and all that you do. Thank you for being here 24/7 to take care of me. I am so happy to have the relationship with you that I do now.  I know we've had to work on that and we've had our ups and downs but you are the most beautiful person inside and out and I'm lucky to have you as my mom.  Next Mother's day we'll get back to our normal Mother's day breakfasts with you and Grandma and Lindsey (and now Abby) for the usual Hoff's Hut brunch.  Bleh...(about the food) but I'll be smiling with glee for sure that we are all together.  XOXOXOXOXO

Wednesday, May 4, 2011

Looking brighter

Finally, some good news.  Dr. Hayden said my skin looks to be healing.  It's still bruised in parts but she feels that underneath it is healing and happy and will eventually push out and replace the bruised part.  Oh yeah.  Happy dance!

Second, she says that I do not need to be worried about inflating the expander prior to radiation.  She wants my skin graft and incision scar to fully heal before we pump up it up.  Not to worry about timing she said if the radiation oncologist (I'm meeting my first at St. John's on Tuesday morning) wants me to start the radiation mapping process sooner (4 weeks post surgery rather than letting me wait until 6 weeks post surgery) that it will be okay.  Barbara says we did the hardest part already which was creating a "pocket" for the final implant under the chest wall muscle and using the flex HD.  Apparently we can go up two cup sizes even after radiation.  I was under the wrong impression.  Good news.

I feel so elated. I feel like I can breathe easier. I feel much more relaxed now.  Today I am taking the day off, no doctor appointments, no visitors, just chill time.  Tomorrow I have my echocardiogram at St. John's, fingers crossed that they figure out how to do it and not go anywhere near my incision scar!!

Monday, May 2, 2011

One small step ahead...???

I was a little freaked out that I couldn't finish the complete course of home antibiotics but Dr. McAndrew said my arm looks great and that I'm fine to stop them (even the two pill forms that I was taking in lieu of the more powerful IV form).  Hooray!  Small victory today.

In other news I had to get my "raging bitch" shot today.  That's the lupron shot.  It was a pain in the butt. Literally. You can use your imagination on that one.  Anyway, I will be getting the lupron shot monthly for 3-6 months and thereafter once every 3 months.  Let's add that to my to do list!

I'd like to thank JDR for taking me to my McAndrew appointment today on last minute notice.  She's the perfect doctor appointment companion because she's always thinking of questions I should be asking (good ones that don't occur to me myself) and she is a major multi-tasker.  Mostly JDR or as I like to call her, Jeanne Marie, asks me a ton of questions that I don't usually have good answers to that I end up asking McAndrew or some other medical professional).  Anyway, it occurred to me that I should be interviewing radiation oncologists since I need to start radiation fairly soon.  McAndrew wanted to make sure that if I go to Santa Monica for radiation that the location have the most up-to-date equipment (I want to go to Santa Monica for the obvious reason of not wanting to cross east of the 405 in traffic to Beverly Hills five days a week for six straight weeks...bleh).  McAndrew described it as making sure we have the best machines that can analyze and calculate the necessary geometry that will target the breast area but not go anywhere near my heart. I kind of need that to survive over the long haul.  JDR called around and got that taken care of for me in a jiffy.  St John's in Santa Monica has the same equipment as the Center for Radiation Therapy in Beverly Hills, FYI, as far as breast radiation is concerned.  I will meet my first radiation oncologist next Tuesday morning.

Apparently I missed doing an echocardiogram when I was first diagnosed. An ECHO is an ultrasound of your heart.  There was an order placed by McAndrew but apparently I was never actually told to get it done or it was never scheduled by her office.  Niiiiiiiice.  That being said, I have to get another, or rather, my first ECHO done prior to starting radiation.  Of course, I have no idea how they will take an ultrasound of my heart without firmly running and pressing a probe with sloppy gel all over my now recovering mastectomy incision and barely healed skin graft?  Son of a biscuit that does not make me happy at all. I am gritting my teeth right now with dread.

McAndrew also informed me that she wants me to take a pill form of chemotherapy while I am receiving radiation therapy.  She said it is proving to be more effective than radiation alone, however, it does intensify the side effects of radiation.  Lovely.  If I thought I was going to feel a little sunburned from the radiation, it will now be like I've been baking in the hot desert sun slathered in baby oil like all those idiots used to do in the 80's before we discovered a little thing called melanoma.  WTF.  The pill is called Xeloda and she said it was the pill form of 5-FU which was part of my original FEC-100 chemo treatment when I was pregnant.  That brings my final total to 1) Lupron shots + 2) 5-FU pills + 3) radiation.  Somehow the math doesn't compute.  I feel like there's something she isn't telling me. I really feel like she is throwing in everything but the kitchen sink. Why is that?  I don't like feeling like that.  And let's not forget that after radiation I will immediately start the tamoxifen which I will take for a total of five years.  I'm getting a little overwhelmed here.

Speaking of dread, well not really, more like dull anticipation and faint hope that it won't be the case...I go see Barbara Hayden tomorrow to see if she will have to remove that piece of skin graft and re-close my incision.  She explains that if that were to happen I can do it under "local" and have it done in her office.  She would just have to take "a small triangle" piece. That really does not make me happy.  It seems to be healing and she said it is a waiting game BUT she is leaving town Wednesday and I have to start radiation soon so we don't have time to waste.  If she doesn't like the way it looks I imagine I will have a procedure done tomorrow to fix it.  Ugh. Ugh. Ugh.

And another thing that is up in the air because of this "healing skin" issue is the fact that I still have to "pump up" the expander with saline to the appropriate bra cup size.  I have to be finished with the expansion process BEFORE I start radiation.  It has to do with the geometry of the radiation process.  Once they start I can't do anything more to the breast area.  So that's another thing "we", meaning my medical team, have to figure out.  McAndrew said that all these things will be discussed with her, Barbara Hayden, and the radiation oncologist to determine that proper balance of how long I can wait to heal and do the expansion process vs. how quickly I need to just move forward to the next step.

Sometimes it hits me just how scary all of this is and how I'm not really out of the woods yet nor am I at mile 25 of this stupid f-ing marathon.  Just had one of those moments typing about all the things that are still left to do. Every time I feel like I am closer to the end, I realize how I am just like a donkey with a carrot tied on a stick in front of them.  I am continually chasing the proverbial carrot. Hee haw. Hee haw.  I'm a dawwwnkeeeeey (that's said a la Kenneth from 30Rock style).

What hurts right now the most is my stupid left arm from the "axillary lymph node dissection" - aka removal of level 1 and 2 nodes in my arm pit. I mean what did they do exactly when they took my lymph nodes out?  What did I need my lymph nodes for anyway (my mom asked me that)? And will it ever stop feeling so numb?  Here's a little instructional video I found that helped me figure out the first question...this is mainly for you doctor wanna-be folks like Ashley.  If you aren't a doctor type do not, I repeat, DO NOT continue to Chapter Two after watching the first video on anatomy I am linking you to. Take my word on that. Alright?  Later on I'll explain why I need lymph nodes. We need a lesson on lymph nodes.  The answer to the final question is that I may not regain full sensation in that arm pit because the nodes are close to a major nerve that can get damaged in surgery.  The numbness could make shaving the arm pit dangerous or impossible.  Or alternatively, it could make laser hair removal a real breeze. No need for numbing spray!  For all you Billy Madison fans..."If you're going to stay home today, you can can help me shave my arm pits!"

Anyway because my arm hurts I haven't been great about doing my physical therapy exercises. I do some but not a lot because I don't want to hurt the healing of my incisions either.  I'll have to ask Dr. Hayden about that tomorrow. Jeeez, it's like walking a fucking tight rope.  I really, really would like to just fast forward to next summer please.

So things to do 1) explain the lymphatic system to myself and those that want to know and 2) write the "how-to" manual on chemotherapy and being bald.  My scalp is doing so nicely this second time around.  I knew what to expect and how to manage it.   A surgeon's scrub brush is key.

Sorry for the cynicism in tonight's post. I suppose I am just feeling a little jaded!!

Sunday, May 1, 2011

Happy Birthday to me!

Great day today with my family. Leo was delicious today flirting with Momma. Abby was precious watching donald duck cartoons with Momma in bed. Lots of emails, texts and facebook messages that made my day. Thank you all for that.  It was a better day than I imagined.





Seeing Dr. McAndrew tomorrow and Dr. Hayden Tuesday.  I'm feeling pretty good. More and more movement in my arm and I'm able to do some of my physical therapy exercises. I've weaned myself off of the pain killers and am forging ahead!  All systems go!!