preliminary scan results

I called the Drs office and got preliminary scan results. The spots they are checking on in the lungs have not changed in size at all. I am glad about this, I find it hard to believe that if they were cancer that the chemo would keep them the exact same size throughout all the treatments, but what do I know. The other awesome news is that there is no new growth anywhere so that is great! There apparently is a small cyst on my ovary but I was told it is not considered suspicious to be cancerous and it is normal. We will be meeting with the Dr Friday to discuss the scan and discuss the surgery

Only way out is through

One of my aunts has started compiling little daily readings for a book she is writing.  She sent me a few of them the other day and one of them I found so fitting to my situation, I asked her if I could post it on here.  The below is something I go through every day, asking myself how I got here and accepting where I am.  I wanted to share it with all of you in hopes I can be better about following the idea of acceptance and surrender, open awareness and compassion.  I loved the title of her reading that states "The only way out is through".

“Why me?” “Why this?” “What did I do to deserve this?” These pleadings are to no avail as all are unworkable. Yet, even here, we can practice open awareness and self compassion. Even here, if we are enduring, attentive and endeavor to recognize our pain and fear, the light will come. In the dark we cannot see and cannot know what is out there in the great expanse of timelessness and uncertainty. By being still, fully encountering and opening our fearful hearts as we contemplate the abyss we can discover a small beacon to light the way. The only path out is to travel through. To surrender to what is, to say, “Even this, I can accept and allow.” -Carolee Lindsey
 

1st radiation oncologist recommendation

I had an apt today with the radiation oncologist that I have seen before at RI hospital.  He had met with my surgeon and was able to discuss with him the exact location of my tumor and whether or not it was up high enough away from the pelvic area to avoid needing radiation.  Unfortunately it sounds like the 7 lymph nodes that had the cancer in them were in my pelvic area enough where the Dr feels it is necessary to do radiation to prevent recurrence. 

We will get a 2nd opinion on this when we go to Sloan at the end of the month.  This still obviously isn't what I wanted to hear.  And it will be really hard to decide what to do if the Dr. at Sloan recommends that I don't get it.  Either way this is not what I wanted to hear.

The radiation is 5.5 weeks long M-F, so 28 days long, not how I want to spend my summer!  It would start 2-3 weeks after surgery.  I am hoping to find out a better idea of when the surgery is when I go to discuss my scan results next Friday the 19th, and my scan is Tuesday the 16th. 

Veda made me do it!!

A stop & shop cake = $11.99
Tickets a friend paid for to fly out from AZ for the week = $$$
Your friend insisting you smash your face into a cake to celebrate your end of chemo = priceless

 

 

celebrating end of chemo

This is what I think is in order to celebrate the end of chemo!

Veda

My friend Veda has been such a great help this past week, I am so sad to see her go tomorrow.  She is so great with the kids!  We have gone on wonderful walks together and I am so glad I was able to spend good time with her while she was here. 

 

 

Loving half of chemo

I can tell such a difference between getting the chemo they left out and not getting it.  I am tired but not sick like I usually am and it is so nice!  My best friend from home came for the week to help me with the kids and its so nice to be able to hang out with her and not be in bed!  My mom went home last week and after taking care of the kids alone for a week i appreciate the help even more!

Compromise

I am getting the pump part of the chemo and another part but  not the rest of it that in theory makes me really sick so I am happy!  It will be interesting to see what just getting the 5FU that is in the pump will do.  But I imagine it is way better than getting it all. They said a lot of people only make it to 9 treatments so I did pretty well!

Last treatment?

The nurse called back and said the Dr will decide when he sees me Tuesday if I should get the last treatment or not.  My fingers are getting worse.  It is hard to do Ellys hair and button Drew's onesies cause my finger tips are numb.  I don't want to get my hopes up but here's hoping!

2nd opinion on radiation

I finally have been able to get myself an apt with an oncologist at Sloan Memorial hospital in NYC.  I want to have another opinion deciding if I should get radiation on my colon area and know that I'm doing the right thing before I go down that road.  Thanks to one of my cousins and his wife who are Drs out there and have helped me get the apt and graciously offered for Bryan and I to stay with them while we go out for this visit.  I got an apt for the 30th of April.  This is after my last scan which I have scheduled for the 16th of April and before surgery which is not yet scheduled. 

I am very excited about this.  I have another apt to see the radiation oncologist here in April and I feel like I will be less anxious about that apt knowing it is not the end all and what he says is not necessarily the answer. 

This past weekend ended up to be more challenging than I had hoped after the last treatment.  I was very nauseous all day saturday.   I called the Dr today and left a message that the neuropathy has now started in my hands.  I am secretly hoping he will tell me to skip the last treatment, but also knowing that probably won't happen.  Trust me I will let you all know if he lets me skip it!

neuropathy

I have developed neuropathy in both of my feet.  This is something caused by the chemo, it has to do with my nerves and basically my feet are slowly going numb, starting at the toes.  I was told it will get worse over the next 3 months and it will last about a year.  My aunt who went through chemo has neuropathy very bad in her feet and I am not looking forward to joining her in this discomfort!  The Dr. actually told me that in a lot of patients that developed it at this point he would just end their chemo regimen but for me he wants me to do the last one.  Why am I so lucky?  I don't know, but I didn't agrue, I can get through one more if I made it through 11!!!

This last one hasn't been too awful so far, but everything comes and goes by minutes so it's so hard to tell how I'll be feeling even an hour from now.  Except that I know I won't be feeling my toes!

roller coasters

I have never been a fan of roller coasters.  I feel like my life has been an emotional roller coaster the last 6 months or so.  When I feel so good on my good weeks its hard not to be smiling all the time because I don't feel ill!  And then when I realize I only have a few more days of this feeling I start to get sad and anxious about my next treatment.  I start to feel sick before I even get the actual chemo in the IV, probably when they start with the anti-nausea is when I start to feel ill.  Then by the time we leave there I am ready to just be in bed and can't wait to get home to start my next days of just sitting/laying in bed cause it's all I can do. 

Each time I get a treatment the nurse goes over a slue of questions about how the last treatment was. They involve things such as: were you nauseas? whats your emotional distress on a scale of 1-10?  The guy that is often sitting in the room next to me to get his chemo treatment is probably around 80.  Actually I know he is because I heard him give his birth date last time.  His answer to these questions is always no nausea and no emotional distress.  I wish I could be in his boat!  I don't know if he's lying, which I don't think he is, he seems like a decent guy that would answer the questions honestly.  But perhaps when I'm 80, chemo wouldn't really phase me either, but at this point in my life it's rocking my boat!  He also goes home with the pump like I do for 2 days and he talks about it like he doesn't even notice the thing, I wish!

I feel like after my last apt with the oncologist that he is just so used to patients who are older and don't have little kids and a job to get back to and don't have 4-6 weeks to just wait for surgery!  The visiting nurse that comes to take off my pump told me that I'm her only patient under like 60 and she has a lot of patients! 

I have heard lots of people say that 1 in 3 people will end up with cancer.  If this is true I guess I pray that I am getting my turn out of the way early and I can live the rest of my life full of scans and colonoscopys that come back cancer free.  And I pray that the other 2 of the three are my children and they never have to go through this.  So hopefully when I'm 80 I will not be getting chemo even if it wouldn't phase me and I can be retired and hanging out with my grandkids! I just pray I don't feel like I'm 80 by the time all of this chemo/radiation treatment is all over. 


"You are as young as your faith, as old as your doubt; as young as your self-confidence, as old as your fear; as young as your hope, as old as your despair. "~Douglas MacArthur

latest drs apt

I didn't get all the info I was hoping to get out of my last apt with the oncologist, but that was kind of expected.  He didn't meet with the surgeon or the radiation oncologist as I had hoped.  He did however give his opinion on the radiation and said that he would probably suggest that I go through with it to be safe.  Not really what I wanted to hear.  Then he changed his response about when I would have the surgery.  Last time we talked he told me it would be 3 weeks after my last treatment and this time he told me 4-6 weeks after. 

This just makes it seem like I will never get my life back.  I need to think positive though and concentrate on the fact that I might get 5ish weeks where I am feeling ok before I get surgery so that is something good I guess.  Then after sugery they told me at one point they'd only wait 3 weeks before starting radiation but who knows if that changed as well.

where did the good days go?

I feel like I experienced something worse than chemo this past week.  First I started off the week getting pink eye in one eye and then the other....Then I don't know what it was that I got sick with but I had a high fever and some kind of stomach bug for 5 days.  I think it was so awful because it was supposed to be my good days!  In the middle of it all I couldn't have fathomed getting treatment this Tuesday but now that I think I'm better (fingers crossed) I think I can handle it.  We will see how my blood work is and see if my body is ready I guess.

I am supposed to see the oncologist on Tuesday and I am hoping that he has spoken with the surgeon and the radiation oncologist so we have some idea what they're thinking in regard to radiation.  The oncologist said he would have talked to them by Tuesday but shall see.

day by day

I can't really get excited yet that there are only 3 more treatments.  It sounds so daunting when I'm in the middle of everything even though I know it's not much left.  I still have to just get through each day.  My hair does in fact continue to grow despite what I thought a while ago but it is falling out like crazy which is discouraging.  I don't think its that noticeable yet and maybe it will stop but it is probably a third of what I had before all of this.

This last treatment really wiped me out, I had one good day and the rest weren't so much.  Hopefully this coming week won't be too exhausting so I can rest up!

I have such amazing people in my life to be thankful for.  I have my amazing husband and my mom here with me to help with everything.  AND Monday through Friday one of my cousins, friends or someone from church comes to help with the kids for bedtime and dinner time.  We still have 3 meals brought to us each week through the pastor and his wife, our neighborhood and people at work.  Our amazing neighbors next door have babysat countless times for us and we have to force them to take payment, which usually doesn't work.  They have allowed Bryan and I to have much needed date afternoons where we can go try and be a normal couple. Thank you to everyone who makes my life easier through this time with meals, babysitting and friendship!

fatigue

fa·tigue

/fəˈtig/ Show Spelled [fuh-teeg]adjective, verb, fa·tigued, fa·ti·guing.

noun

1. weariness from bodily or mental exertion.

2. a cause of weariness; slow ordeal; exertion: the fatigue of driving for many hours. 

3. Physiology . temporary diminution of the irritability or functioning of organs, tissues, or cells after excessive exertion or stimulation.

4. Civil Engineering . the weakening or breakdown of material subjected to stress, especially a repeated series of stresses.

 

I was going to only list the most appropriate definition but I couldn't make up my mind.  This is the only word I can think of to describe the way I've been feeling lately.  I think the chemo rounds are finally catching up.  I have noticed after number 7 that my "good weeks" are turning into tired weeks.  I just can't seem to feel rested when I get up in the morning and I'm tired all day.  I also seem to consistently get a head ache halfway through the week that lasts for like 3-4 days and I can't get rid of it.  Not liking this new pattern.

My mom returns from Arizona on Sunday so I think that will be a huge help with my tiredness, having a built in babysitter is really the best thing ever!

 

Anyway, enough complaining, one thing I really wanted to get across is how much I still love getting comments on the blog.  I get emails on my phone when comments get posted and it just brings a smile to my face everytime someone writes something.  You are all so encouraging and supportive and I feel so constantly loved by everyone reading my blog and leaving me little notes of inspiration, so keep it up it is really helpful for my mental well being!

Life is full of surprises

The two most prominent surprises in my life that stick out in my mind are:  finding out that the girl I had been carrying around in my belly for 9 months was in fact a boy and being told I had a cancerous tumor after my colononscopy.

I was told when I was 5 months pregnant that I was having a second girl and we prepared the rest of the pregnancy for our daughter.  When I gave birth and found out that I had a boy instead, it was shocking for less time than one would think.  I would say within hours I was already used to the idea and within days it was like a distant memory that we were supposed to have had another girl instead of a boy.  Except of course for the bright pink room that they both still share.

Finding out that I had cancer, well, there isn't a day that I don't have a moment in it where I say, really this is my life now?  Can't I wake up already and have this bad nightmare be over?  But having a boy made the second surprise of having cancer a tiny bit easier to handle.  I have decided that after having the poison of chemo I am certainly not going to create any more babies in my body.  If I end up getting radiation I won't even have that choice, I will become infertile and go through menopause at the age of 32.  When I thought I was having a 2nd girl I had promised Bryan I was willing to try one more time for a boy to carry on the Ploutz name.  And lo and behold I didn't even have to!  I am totally ok with the idea of not having anymore kids and I feel blessed that I don't have to go through an emotional roller coaster with this situation.  I think being emotionally exhausted every day for the past 5 months has made me realize that in my new life I couldn't handle another baby and my two healthy beautiful children are such a blessing, what more could I ask for? 

home again

I made it home safely on Monday.  Had chemo Tuesday and here I am again, in bed, awaiting for Monday to come because I know I will feel better by then. 

I had an apt with my oncologist on Tuesday which proved to be full of more confusing information regarding radiation and my lung, so no news there.  Except I guess the new confusing news.  He seems to think whether or not the spot in my lung is cancer will effect the decision of whether or not to do radiation.  So this means I still won't know if I'm going down that path until after pathology report comes back after surgery.   He thinks that if it has spread to my lung this means there is less of a reason to do radiation on my colon area to prevent spreading since it would have already proven to have spread.

Surgery should be mid April and I'm trying to figure out how to get back to Tucson before then!  I realized how sad it was this morning when I was picturing myself back in a hospital bed awaiting surgery and wanting to be there because it meant chemo was over, so I need a new exciting trip or something to look forward to that doesn't involve a hospital or surgery!

Friends

friend (frnd)

n.

1. A person whom one knows, likes, and trusts.

2. A person whom one knows; an acquaintance.

3. A person with whom one is allied in a struggle or cause; a comrade.

 

I have been able to visit with a few friends from college and high school while out here in Tucson.  One of my friends from college flew in from Colorado to surprise me, and it worked!  It has been great to see everyone and reminisce.  I leave for RI tomorrow, and I am missing my kids and husband but certainly not ready to get back in the chemo chair.

 

 

Respite

res·pite

/ˈrespət/

Noun A short period of rest or relief from something difficult or unpleasant.