"Exhale"

Well, I have been thinking that I should update this blog for about a month now.  Radiation is finished.  So happy to have that done!

The last month has been sort of "just hangin' on".  I have tried to get back to normal...but I have discovered that normal is long gone. 

 Yesterday was a pretty emotional day for me.  The only way I could think to describe it was to "exhale".  I feel like I have been holding my breath just hoping I could make it through all of the hard stuff and still somewhat take care of my family.  The beginning of school meant a chance to get on with the business of life.  I think we are all really ready for that.

I am hoping the fact that the kids started school yesterday and we will now have ROUTINE in our life again will help.  They were all pretty much begging to get back to school.  This summer really hasn't been any fun for any of us, sigh. Megan and Ariana seem to like their teachers, and LOVE wearing new school clothes.  Liam likes middle school so far--he has some classes with friends, and loves the expanded choices at lunch.  :)  Kate is happy to be back with friends, and busy.  She even said she was bored with reading so much and ready for school again~  Lydia is off and running with Marching Band and will soon begin teaching several beginning piano students.  Yeah, all of the years of lessons are paying off!  She is excited to do it, and also excited about the spending money she will have.  She also wants to save up to go to EFY again next summer because she had so much fun there this year.  There is a bonus this school year--she is driving so Mom doesn't have to be the taxi quite so often.

Today I visited my radiation oncologist for a follow up visit.  I was surprised at the visceral reaction I had to not wanting to be in that building.  I found myself sitting as close to the exit as possible while waiting to be called back into a room.  Strange, because I used to go there every single day for treatment.  Mostly this visit was just to make sure that all of the skin problems from the radiation have resolved...and they have, so that is good.  I still have some swollen muscles that make reaching and twisting painful sometimes.  The good news is that he said that should resolve in a month or so as the swelling dissipates.

The continued mystery seems to be navigating all of the side effects of the medication that I will take for the next five years.  Basically it shuts down the reception of the hormones in my body.  Some folks describe it as chemically induced menopause.  The most common side effects are hot flashes/night sweats and weight gain.  I haven't had much trouble with the hot flashes thing, but the weight gain is terrible!  The only way I could think of to describe it is feeling "puffy".  Not only have I gained weight and lost what little waist I was holding on to, my feet and sometimes my hands just feel "puffy".  Reminds me of the last trimester in pregnancy.  Unfortunately this won't be over in a few months and I don't get a sweet little bundle of joy to make it all worth it!  I have also experienced some nausea and today my blood pressure was really low. Maybe that is why I haven't really been a bundle of energy lately.   I am trying to remind myself that I don't have to have all of the spring cleaning that didn't get done finished the first three days the kids are in school.  Maybe spring cleaning will get done by Christmas?  Maybe not...

So on to new chapters...spring and summer flowers never did get planted at our house this year, but I do think I will make it a point to go get some mums this weekend.  I love the fall.  Time to embrace that and just let go of what is done...

Thanks everyone for your love and support during this crazy ride called cancer!

Tondalea

One more week! Actually, I should write it "onemoreweek".

Well, I am sitting here trying to pull myself together to make it "onemoreweek" with radiation.  The reason it is one word is that when I am feeling overwhelmed, tired, hurting, etc I just mumble it to myself.  It rolls off the tongue, through gritted teeth, with a sigh. I can do ANYTHING for one more week.

To be honest, I think I have been "white knuckling" it since they said the word "biopsy"-four long months ago.  I am a little bit terrified that when that last radiation appointment is done I am going to melt into a little puddle and be a worthless mess.  I was thinking that I need to come up with some sort of celebration so I have a reason to not fall apart.  Suggestions???

Really, things aren't all that bad.  Slug life just doesn't suit me that well.  I really like to be DOING things.  I like to have a clean house, clean laundry, and bills that are paid on time.  And, even though I really don't like cooking at all, there is a level of satisfaction that comes with actually having the energy to prepare, serve and clean up after a meal--one that doesn't include frozen waffles or paper plates.  Someday I will get back there--today I am just grateful for frozen waffles and paper plates.

It sounds like friends from church will be bringing some meals and inviting my kids for play dates this week.  Thank you ALL in advance!  It makes me think I will actually make it through this. 

So, here we go!  Onemoreweek...

Checkin' in with the Oncologists--plural-yes, plural.

Yesterday I went to see both of my oncologists.  I still can't believe I have one oncologist, the thought of two just astounds me.

Anyway,  I met with the medical oncologist.  His job is to "manage the cancer".  He is in charge of meds, overall plan, etc.  He ordered another set of liver tests to see how my liver is handling the tamoxifen.  The good news is that all of the counts were normal.  He looked me straight in the eye and told me that was terrific news, and that he had to be honest.  The last counts that he saw really, really scared him.  I guess people don't live very long/high quality lives with the counts I had last time.  His best guess is that I was still trying to process the anesthesia out of my system from the surgery. The good news is that my body seems to be handling this medication just fine.  I don't have to see him for another 6 months! 

I also saw my radiation oncologist.  Busy day.  I see him once each week during radiation.  I just started the 5th week.  He was just advising me how to best deal with the side effects of the radiation.  There really isn't anything that can be done to make things better, in fact he expects them to just get worse over the next few weeks.  He just helps make sure the skin isn't infected, etc.  I still have three weeks of "slug life" left.  I don't know how much time will be needed after the radiation to "bounce back to myself".  It takes some people up to 6 months.  I, of course, plan to be an over-achiever and not take nearly that long.  The good news is that in August I will be done with "breaking" things and I can concentrate on trying to just improve.

Thanks to everyone who has offered their help.  I think the weeks of the 18th and 25th will be when we need to cash in on the offers for dinners.  My energy is so limited these days.  I used to be able to take a nap after radiation and have enough energy for making dinner--now that doesn't seem to be working any more. 

I decided to postpone Megan and Ariana's birthday parties with friends to August.  Hopefully when I don't have to do radiation everyday I will be able to cope with some of the extras.  Thanks for the offers to help.  I will be contacting you in August, if you don't mind.

I just want to say that even though this is one of the hardest parts, I am still extremely grateful for the fact that everything has gone so well so far.  I feel blessed by all of the support and love extended to me and my family, and thank you all for it.


Tondalea

"Oh, that's what you mean by exhaustion! "

Well, it has been a while since updating the status here on the blog.  Things have been moving along pretty well.  We were all thrilled that the genetic testing came back negative, and happy to have things be "normal".  My energy level has been pretty good, and I have been able to keep up with life pretty well.  I go to have radiation everyday.  The people are really nice, but it is a depressing sort of place to be...especially when people are returning because of a recurrance.  I try not to dwell on that too much, and just assume that this will be my one ride on the cancer roller coaster. 

Well, everything WAS going really well.  The nurses and doctor all told me when I started this process that week three is where things really hit as far as the exhaustion and side effects are concerned.  Wow, they know their stuff!  I feel like I have been hit by a BIG TRUCK.  Before I was tired, now I know what they really mean by exhaustion.  It is almost like every muscle in my body is completely used up.  It takes great effort just to keep my eyes open.  Yesterday I was only awake about 7 hours total during the day.    I guess now is the time to re-assess and start accepting the help that has been offered all along.   Glenn and I talked last night about this.  Really things have been going so well, a couple months of being tired and not being able to do everything I want to isn't the end of the world.  We are just going to have to prioritize and maybe lower our standards a bit  :)

So, just a fair warning...it looks like I am going to be a slug for at least the next month.

Anyone out their just LOVE to plan birthday parties?  The things we worry about most as moms...it isn't all of the major responsibilities that a mother takes care of that bug me...it is that I have two really darling little girls that have waited all year for THEIR day...and I don't seem to have the energy to make it magical for them.  We  will make do, I am sure.

Thanks to all of you for your love and support along the way!

Tondalea

Big Sigh of Relief!

Okay, today was FINALLY the day to get the genetic mutation test results back.  I tested NEGATIVE for the BRCA1 and BRCA2 gene mutation.  There is still another test that we could do, but we are debating this because it is expensive ($800) and it only finds about 1% of  people that test negative, and then changes that status to positive. 

This means we don't have to decide about the double mastectomy and hysterectomy!  Yeah.  Tomorrow is the beginning of radiation.  6-7 weeks.  The two biggest side effects are a nasty sunburn on the affected area, and exhaustion.  I have no delusions that it is going to be a walk in the park, but I am so glad not to be facing multiple surgeries and recovery from all of them.  Now to get my head back on straight and get organized!

I can't believe how stressful this was, to be waiting for potentially generations of bad news, not just for me.  I feel like I can walk taller and straighter now. 

The real task ahead is to figure out how are we going to manage Glenn's first summer working from home, me doing radiation/being tired, and the kids home all day every day.  Hmmm, maybe I could rent a cruise director or something to keep the kids busy.  It is nice to know that Lydia can drive herself to most of the stuff she has going on, and maybe even help deliver the younger kids to camp, etc.

Thanks for your prayers and good thoughts everyone!

Tondalea

Genetics and a bump in the road

Hi Everyone,

The sun has come out, so everyone seems to be happy around here!  I have been able to do some interpreting, and generally keep up with life the last week or so.  That feels really good. 

We met with the Genetic counselor on Tuesday.  We opted to get the genetic test even though it costs an arm, leg, and another leg!  This will tell if I carry the mutation that --in the words of my surgeon-" lets us know that your breasts are cancer making machines".  The repercussions of this are that we would need to scrap the radiation plan, and do a double mastectomy and remove ovaries/tubes, etc.  That seems like a whole lot of surgery that I would rather avoid, so fingers are crossed that this comes back negative. 

Everything has gone as smoothly as we could hope for to this point, but everyone has warned us about bumps in the road.  I think we hit one.  When I met with the medical oncologist he prescribed Tamoxifen--standard procedure for pre-menopausal women with breast cancer.  This medicine can be hard on the liver so he begins every treatment with a baseline liver function test.  I am pretty familiar with this process because I had several of them last year when taking a different medication.  Friday after arriving home from all of the appointments and getting the prescription dropped off at the pharmacy, I received a call from his nurse telling me to wait to take the tamoxifen until I meet with my GP because of elevated liver counts.  I saw her today.  One of the numbers was slightly low, two were slightly high, and another was 100X the normal amount.  There are an assortment of reasons this could be happening--many of them very unlikely given my current lifestyle/lack of symptoms.  We repeated the test today to see if there are similar numbers, I also go for an abdominal ultrasound tomorrow.  Life wasn't interesting enough, we have to add another wrinkle!

I often say that I don't mind life being "boring" because that means there aren't any major problems...it looks like it will be a WHILE until life is boring for us again, sigh.

Tondalea

Oncology Day

Sigh of Relief!  Today was the big oncology appointments.  First with the Medical Oncologist.  He had good news to share.  The oncotype score test came back "low" for need to have chemotherapy.  The plan is drug therapy and radiation.  We still have one more hurdle to overcome.  The breast cancer gene test.  We meet with the Gene Therapist on Tuesday.  That test will probably take three weeks to get the results.  Radiation is scheduled to begin June 8th. Every day for 6-7 weeks.   We are delaying until we know about the BC gene results.  If they are positive for the mutation, we go back to surgical solutions.  So here's to hoping the good luck continues!