Expectations and Blessings

I am sad today.  I have been sad since I woke up, yesterday I was frustrated, and the day before that indescribable.  Ever feel like the sky really is falling?  That cliche when it rains it pours is oh so true, and I know this so I shouldn’t be surprised.  I don’t want to talk about all the stuff that made me mad and frustrated and overwhelmed, because compared to why I am sad, it now seems very small.

Life is short.  Everyone knows this, those of us who have lost a parent or both parents or an immediate family member know this to the bones.  I grew up with a sense of it, I always sort of thought they would kill me eventually lol.  That’s awful I know, but half true and believe it or not makes me laugh when I think of it.  I know that life is short, I do.  Yet I was bowled over this morning when I found that a friend had passed.  The shock is because it wasn’t from cancer, she is a cancer survivor and has been one of the few people that I really felt ‘got’ what I have been going through the past few months, and especially with the surgery.  You can see her name to the left of this post under the comments section- she just commented last week.  Karen was healthy, living her life, surviving and helping us learn to survive.  Then she slipped or fell down her basement stairs and passed away, alone.  All of the jaws in our cancer group dropped I’m sure… we are supposed to die from CANCER… we expect it, we’re halfway prepared for it, but this?  This is just cruel.  To her, to us, to her family. 

I hear ‘it was her time’ replayed in my head over and over.  I skimmed her comments and emails to me and she always said ‘i count myself lucky’ or ‘blessed’ in almost every one.  No matter what the subject, she worked it in.  That’s what I’m going to take from her friendship, a reminder that life is short and we should count ourselves lucky and blessed just to be here.  The term ‘life is too short’ sprang out at me all day, but not in the context of physical life.  I mean it seems that  however long a person actually lives in physical years, life is too short for them.  But in the metaphorical context that no matter what expectations we have for the future, none of it is a guarantee.  So all we can do is take it day by day, and address the things in our life in the same manner.  Not easy, or else I wouldn’t keep getting a gazillion constant reminders about it:)

I’m special

Says the radiologist when telling me that I have to have treatments on Black Friday, and one of the technitions is cancelling her plans to be here just for me.  No no no I said, that doesn’t make any sense to ruin someone’s day off just for me.  He said no, doesn’t want me to go 4 days without radiation and it’s done. 

Man did I feel bad!  I don’t even have a sitter for that day as daycare is closed, so I will have to take the monkeys with me and that won’t be easy.  Because there has to be a minimum amount of time between my treatments, they are going to try to fill the time in between with other patients but on a voluntary basis LOL.  Now that I think about it, some people might like it because it means a day quicker to be done for them.   When my last treatment is done, the place closes back up and she can go home lol.  I’m sure this happens but it sounds preposterous to me that one day would make that much difference in my cancer to change everyone’s schedules. 

As for the radiation treatment, it is going well.  I dislike it more and more only because it wears on you pretty quickly at twice a day.  My life feels boxed in and I can’t see the end of the tunnel anymore, I’m stuck somewhere in the middle.  I want nothing more than for it to be done!!!   The technitions are great, wonderful actually and it makes it easier but this sucks.  Healthwise, my skin is only slightly red and the doctor who I see every 2 and half days says he is really impressed that it’s holding up that well.  He said ‘keep doing what you are doing’, which is funny because I’m not doing anything.  I forget to put lotion on most days, and even then only once a day.  I know I should do better, and I’m trying but so far so good at least.

The holidays are coming and I am trying to gear myself up for being excited, but I’m really not.  I don’t care a single itty bitty ounce about black Friday next week.  It’s not stress, I think this has been a very tiring year and extending any more energy for the holidays than I have to sounds like work.  Besides, last year I bought a zillion toys for the kids, so much that I had to put a quarter of them away for their birthdays and they didn’t play with everything, or broke it quickly etc.  So this year is going to be much more low key, a few good gifts for the kids, some yummy food and hot chocolate, some Christmas lights, Christmas Eve Mass, and I’m done. 

This is off-topic, but there are several posts about the mammogram scandal being talked about over on www.motherswithcancer.com   and some very good points being made if you are interested.

There was a

There was a little girl

Who had a little curl

Right in the middle of her forehead

And when she was good

She was very very good

And when she was bad

She was horrid.

 

My mom used to sing this to me all the time, I guess to tell me how bad I was.  I hear I used to have a temper.  I imagine I looked something like this:)  Here is Sin growling at me right.

 

And here is me above and below.  I look like both of my kids actually, alot like Chance since I always had short hair but like sin cuz of the eyes and curly hair.

 

 

 

today

If you can have your oncologist/radiologist in the same building, do it.  As I was leaving radiation today, my oncologist Dr. Webster was standing in the hallway with a patient and saw me.  I had a face mask on because what?  yep you guessed it I’m sick again.  She pulled me into a room, examined me and prescribed an antibiotic to keep it from getting worse like last time.   Boom, just like that.  No appointment, no phone calls, no hassle of trying to explain that yet it is just a runny nose right now but I would feel better with an antibiotic.  It was awesome!  Plus you get to see them in passing, and if you like your docs that’s a good thing.  I also got permission to visit my friend Lori at chemo as long as I wear my face mask and don’t let her lick my hands lol.  Got that Lori?  No licking me LOL. 

This was good news because I had planned to visit her and had changed my mind due to the illness, so if our doc says it’s OK, I am happy to visit.

Things I love

In the midst of a recession, being laid off, not being particularly fond of the apartment we live in, dh’s new job transition, and of course having and battling cancer- there is alot to be sad about.  Plenty of negativity around if anyone is looking for it.  I myself realized that Thanksgiving and Christmas were literally weeks away yesterday and was like ‘DIDN’T I JUST DO THIS’.  But in the midst of all the things that aren’t great this year, I have to remember the most important thing:  I’m cancer free.  And still under the care of great docs who are working to keep me that way.  That in itself should be enough to make all the other stuff minute.  Of course we’re human though and the other stuff creeps in and creates stress, etc. so I decided to take it down a notch or two and think about all the things I love, or love to do.  Not like, liking something isn’t enough to keep us out of the winter-I wonder if my husband will lose his job-I hope this radiation works and I don’t get a recurrance-reconstruction is just around the corner-blues.  And the list that I’ve come up with so far while driving back from my radiation appointment is quite small so far.  I’ve been on auto-pilot for so long, doing things I have to do instead of what I would normally do or prefer to do, that I don’t even know what I like or want anymore.  So I’ll start my list and you all can think about the things that you love in this life.  I don’t mean the obvious things like family and children, those are a given.  I mean the other stuff.

Things I love:

1.  Coffee.  Seriously, I love coffee.  Doesn’t have to be Starbucks or a mocha, if it’s made good even black coffee with a little sugar is yummy.  I was worried about the consumption of coffee, but along with the ‘bad coffee’ studies, there are alot of good ones that say drinking coffee everyday lowers the risk of getting oral and throat cancers.  Good enough reason for me to enjoy guilt-free.

2.  hmm… that’s all I got so far LOL.  I’ll keep working on it.

 

Nothing like a little radiation in the morning

So it began today.  The first appointment was longer because 3 different people than last time stood over me and took more measurements and pictures and x-rays, moved me around into the right position and once the doc approved their whatevers, it began.  It’s quick.  You lie flat on your back on a table and a big machine is over you, zaps a time or two with noise, then moves to the side to zap my underarm/lymph node area.  Then they switch this thing above me, and put on a box that lowers very close to my body, and more zapping.  I guess this one is more superficial radiation, on the skin surface whereas the other two go right through you.  At least that’s what one tech said.   The second was faster, especially because I didn’t wash off their markings being only 4 hours apart today.  The longest part is the half hour drive to and from each time.

Tomorrow I’m there bright and early, then later in the afternoon.  I also have an oncologist appointment and my 3rd Herceptin after, right before the afternoon rad treatment.  busy day.

 

From Patti B. – New IBC Clinic opening

An email from Patti Bradfield regarding a new IBC clinic opening soon.

Hello All,

I would like to bring some very exciting news to our IBC community.  It is my pleasure to announce there will be a new IBC Clinic at Fox Chase Cancer Center in Philidelphia in approximately six months (if not sooner).

With this new clinic opening, it is also my honor to tell you that Dr. Massimo Cristofanilli will be heading up this new facility.

Yes, Dr. C is moving to the East Coast, but the Morgan Welch IBC clinic in Houston will be working closely and with the same protocols as those which have become standardized by Dr. C and his team over the last three years.

Also, In addition to his position in the department of medical oncology, Dr. Cristofanilli will be the co-director  of the Women’s Cancer Program,  He will also serve as associate director of clinical research for Fox Chase’s Cancer Center Support Grant from the National Cancer Institute.

From the Fox Chase website :   http://www.fccc.edu/news/2009/2009-11-02-cristofanilli.html

Fox Chase Cancer Center Appoints Massimo Cristofanilli, MD, FACP, Chairman of the Department of Medical Oncology (11-02-2009)
PHILADELPHIA (November 2, 2009) – Noted breast cancer clinician and researcher Massimo Cristofanilli, MD, FACP, has been appointed chairman of the department of medical oncology at Fox Chase Cancer Center and will hold the G. Morris Dorrance Jr. Endowed Chair in medical oncology. He will arrive at Fox Chase in January 2010.

Dr. Cristofanilli is very excited about this amazing opportunity and additional facility for women across the United States.

Please read the website from Fox Chase which will give you more details about this event and also more about our friend and Doctor,
Massimo Cristofanilli.

Patti

4 Weeks post-op

Last Friday was 4 weeks since surgery.  As far as the surgery goes, I’m feeling TONS better.  The hysterectomy part is basically healed I think, they tell you don’t strain yourself for 6 weeks afterwards but I have no issues or pains in that area.  My chest is healing still, I am waiting for the 6 week mark mostly because of the mastectomies.  My left side still has a dull ache, and occasionally my underarm will hurt in the lymph node area.  I read that this is pretty common as nerves come alive so I’m not worried.  I can move my left arm more and more, they must have really done a number on my arm muscles because the whole thing hurt not just where surgery was.  I would say I am on the mend, and thank God for that!  My pneumonia is clearing up from the antibiotic also.  I’m still very tired physically, not sleeping all that well but I am not taking anything to help me sleep.  I can, and probably should be, but I felt a need to let my system adjust normally without any more meds than necessary.  I will most likely have to go on something to help with the hot flashes and sleep issues soon though.  I guess I wanted to post an update because it is true, that no matter how awful you are feeling at one point, it can and will get better eventually.

I’m tattooed

Nothing sexy, just 4 little dots put there by the radiology dept.  I had my getting started session where I lied on a table with 3 people standing over me placing sticky measuring tape strategically over my chest.  I must have been working my arm enough because though it doesn’t fall all the way behind my head, I could hold it how they wanted.  That’s good because we didn’t need to reschedule.  Then they did the ct scans, took some pictures, and gave me my schedule.  I start radiation next Thursday, the first day will only be 4 hours apart.  Then Friday is my regular schedule of 8:30 a.m. and 3:30 p.m.  I also have an oncologist appt. and my 3rd Herceptin treatment that day, so I doubt I’ll have time to go home with everything happening right there.  It is also my birthday that day, I forgot all about it but the radiology gal reminded me.  I’m nervous to start treatment and anxious at the same time.  One step closer to being done done done.

Some advice

I wrote a post on www.motherswithcancer.com that I did not cross-post on my blog because it was an update of my surgery and the pathological findings, just all in one rather than spread out like here.  But I put some advice at the end of it that I didn’t include on here and now I want to reiterate that.  Several people have asked me if I regret having the hysterectomy and the double mastectomies all at the same time, especially since I did get an infection and the mess with my bladder etc.  I wasn’t sure of an answer the first time it was asked, but now that I’m 3 weeks out I can say that I don’t.  As hard as it’s been, imagine having to go back under and another 4 week recovery if I had done the two seperately.  Still risk of infection both times, so no I don’t regret having it all done together.  What I do regret- and this is through learning how much my body has taken a toll – is doing such an aggressive surgery the week after finishing 5 months of strong chemotherapy.  My immune system was not prepared for it, and it’s been one thing after another every since in just a short 3 weeks.  I now have pneumonia, yup my cold turned ugly and I’m on antibiotics so hopefully I will be on the mend soon.  One thing after another, all because my body was so beaten from the chemo and then the infection I got etc. my immune system has continuously been fighting and I am worn out.  I’ve been eating healthy, doing all the right things, it’s just one of those situations where some stuff that they tell you can go wrong but probably won’t, did go wrong and it’s taken its toll.  So no, I still don’t regret having it all done at once, but I do think a couple of weeks break between chemo and surgery would have made things easier, and I’m still paying for it.  Take it easy on yourself if you’re contemplating something similar… and make sure to be as prepared at home as you can be with food, and childcare, and finances… you don’t want to be dealing with recovery and any extra health issues that pop up and have to worry about everyday life stresses as well.  

My two cents:)