Friday, August 29, 2014

Cycle 3 Update

Last Friday I completed Cycle 3 of my 4.  Today was an appointment at the University Hospitals Seidman Cancer Clinic to discuss my future.  I had my blood work done today as well (which I have done every Friday).

I learned quite a bit at today's appointment.  Honestly, I think some of it, I had been told before but it didn't sink in and much of it was new.  So here is the info.....

  • I will have a total of 4 cycles of chemotherapy.  September 12th will, technically, be my last round.  From my surgical pathology, it was determined the exact gene that my cancer is. Based on this, research and clinical trials, determine what happens next.  Research has shown that 4 cycles is enough IF the cancer hasn't spread.  The gene that they test for, a mutant gene, is NOT in my cancer.  That means that maintenance chemotherapy is really not productive until my cancer has gone somewhere else in my body.  
  • Approximately one month after my last chemotherapy, I will go for a CAT Scan and PET Scan to see if (and where) the cancer has gone.  I will also have extensive blood work to look for markers that may determine if there are cancer cells within my body that the scans can't pick up.
So, basically, a final determination of what my future treatment is until October.  The doctor explained the effects of Chemotherapy are not worth continuing with my type of cancer(s) unless it shows it is progressing.  Therefore, I will have to have scans approximately every three months even if I appear to be cancer free.

The doctor was quite honest with me - he told me, while the surgeon did remove all my tumors, the reality is that it went into my lymph nodes and that means it is within my body somewhere.  It is not a question of if it re-appears but when.  

Since February, I can't think of a time when I felt well...or like myself.  First the infections and antibiotics, then the surgery and recuperation from that, then the chemotherapy and all its side-effects.  

While I'm dreading October for fear of bad news, I am also looking forward to it thinking the chemotherapy side effects will be gone and maybe for the first time in 9 months, I'll feel like my old self.  Reading this post, I think I sound a bit negative but I am truly looking forward to a time when treatments and side-effects are not a part of my daily routine.

One last thing that was decided today is that I no longer have to have weekly bloodwork.  Since my levels have been within normal ranges for the first 3 cycles, I can stop and only have it done once a month - YAY!!

Wednesday, August 27, 2014

Exciting Week

What a whirlwind week this has been - and will be.  Sunday I was able to spend the day with Caitlyn, Cameron, Maria (Cocko) and Brad.  Tuesday, Pootie came home to Ohio to stay. Thursday, a maid service is coming - wooohooo.... and Friday, a second opinion.

First, driving 2 hours with Cameron is an interesting road trip.  He kept us laughing and made the time pass quickly.  I tried to "remember" how to travel with a young child, and was prepared, bringing the iPad and his Boogie Board (a magnetic writing board) which kept him happy the entire time.  Of course, the stop at McDonald's made his day as well.  Afterwards, he wanted to see Caitlyn's "home at school."  First thing out of his mouth when he saw her shelf with all her "treats" was - "Caitlyn can I spend the night for 4 days?"  He was also a big fan of the vending machines outside in the hallway - but he was a bit disappointed that we didn't show him the pool - LOL - Love that boy!!!!

Monday, I had a visitor.  The owner of a local maid service company, Ameri-Serve, came to see me.  There is a charity, Cleaning For a Reason =  What a GREAT service.  They team up with local companies to provide cancer patients with a maid for 4 months.  Their goal is to clean your house so you can concentrate on your treatments and health.  I was amazed by how much they will do each time they come - it is basically spring cleaning each time.  Floor to ceiling - inside and out.  I am so blessed with so much generosity. They are coming Thursday for the first cleaning - I can't wait.

Monday, was sort of a rough day.  I think the activities of travelling wore me down as I was really feeling tired.  At one point, I took a nap, with my phone next to me.  Well, I missed 2 phone calls from the doctor's office - ringer was on and turned up - and I still managed to sleep right through it  - wish I could sleep like that at night :)

Tuesday, was a celebration day - POOTIE is back in Ohio to stay!!!! Now, 6 of my 7 babies are back in Ohio - just spread out around Ohio!

And Friday, I am going to University Hospital Seidman Cancer Center for a second opinion.  I mentioned before that I only have one chemo left and then the doctor at the Cleveland Clinic wants to discuss "controversial" maintenance therapy.  That word makes me a bit nervous so I figured a 2nd opinion can't hurt.  I suspect there will be more tests and scans in my near future to see what has spread and how that will effect future treatment.  More on that after Friday's meeting.

Saturday, August 23, 2014

Maria's Observation

Sitting in Chemotherapy yesterday, towards the end, my daughter Maria comments to me that I am beginning to get irritable. WHAT??

Since my diagnosis, I have tried to change my attitude and emotions to reflect that unless it is health related, it doesn't even bother me.  I thought I was doing really well keeping positive thoughts and comments front and center, but apparently this is not the case.

A simple statement really upset me - I kept asking her - "am I really?"  She had spent 5 days with me during the last cycle of Chemo immediately following and she said for the first few days I was quite grumpy and she saw it coming on rather quickly yesterday.  I didn't even realize it

I admit I can't stand going there and walking in that building.  It upsets my stomach the minute my foot steps in the front door.  I am very anxious and stressed.  I always take a sewing craft to keep my head down because I cannot deal with looking at others getting the same treatment as me.  I also try to pick a chair in a corner where my view is not other patients.  Yesterdays view of the girls shows my choice - 

The blanket warmer is a great view behind the girls
There is such a variety of people there - from elderly to young children.  All hooked up to the toxic chemicals, most with no hair, most looking exhausted and worn down.  The routine of each treatment is:
  1. Hook up my port - take blood
  2. See the Doctor to make sure blood levels are acceptable to receive medications
  3. Receive 3 different IV Bags of nausea/side effect medicines
  4. Receive 2 different IV Bags of actual Chemotherapy Medications
Until #4 everything is just like walking into a regular lab, gloves, sanitary precautions.  Then comes the actual Chemo Drugs.  The nurses dress up in what I call "HAZ MAT" attire - big coverings, special gloves, masks - everything to make sure the drug the are putting into MY body doesn't touch them.

Now I know that these medications are extremely dangerous but it's not very relaxing or comforting to see the HAZ MAT crew coming over to give you medicine that is supposed to make you better - my new normal in my unexpected journey.

Anyway, this was the point that Maria commented to me - I knew the HAZ MAT time unnerved me but I had no idea that was when I became irritable.  Makes sense when you think about it.

Luckily for everyone, by the time I get home, fatigue sets in and I fall asleep :) :)

Friday, August 22, 2014

It's Been A While...

I just realized it has been 11 days since I blogged anything.  I suppose that is a good thing because nothing major has really happened.  

Just the usual:

  • Still having trouble sleeping
  • Queasy stomach everyday - doesn't seem to go away between Chemotherapy Treatments
The great news is my bloodwork has been in the "low" of normal range consistently.  This is a great accomplishment as it is normal to have to miss treatments due to abnormally low blood counts - counting my blessings here.

My fatigue and sleeping is still an issue.  Either I am up all night until daylight, very jittery, or I fall asleep and wake up 3-4 hours later, again unable to fall asleep.  Today, the doctor prescribed a sleeping pill.  Hopefully this will help.  I do nap during the day because of fatigue from the medications and thought this was the reason I have trouble at night, but even when I force myself to stay awake, I still have trouble at night - and then feel worse the next day.

Today's Chemotherapy went as planned.  I noticed that I was having stomach issues within an hour of leaving and was exhausted sleepy by the time I got home.  I took my nausea medication and slept for 2 hours.  I know they say the side effects can take time to get slightly worse and worse and I am praying this is not an indication of what this cycle will hold. 

My Chemotherapy Support Group For Today - Maria and Pam
My excitement for the weekend starts with getting my new eye glasses on Saturday.  I can't wait - my vision has changed so much since taking these multitude of medications and treatments. And then, I am planning on taking a drive Sunday to visit my son, 2 hours away.  This is terrifying because in the past weeks, driving for more than a 1/2 hour causes me issues.  So wish me luck Sunday.  My sweet grandson will be with me so hopefully he will keep me on my toes.

Beautiful Lung Cancer Bracelets being worn by - Me, Caitlyn, Maria and Pam

Above is a picture of the Lung Cancer Bracelets I have to support my journey.  At this point, Caitlyn, Maria, Pam and myself are wearing them.  If you are interested in helping support my journey, just let me know.

And the best news - August 26 - right around the corner - POOTIE is coming home to stay!!! Can't wait to see my baby boy <3

Monday, August 11, 2014

Really??? Now Cataracts?!

I noticed a change in my eyesight since getting sick in February and finally went for an eye doctor appointment today.

This journey has been one thing.... constant change.  Every time I go to the doctor or for a treatment, they find something else.  

Today, he said my eyesight has changed dramatically due to cataracts.  And, my right eye is worse than my left because the cataract is worse on the right.  Oy Vey...

He did say that the steroids I am on, and will continue to be on the rest of my life, is what caused the changes, so my new glasses will make a tremendous difference.  

My energy level has gotten a bit better this week - which I expected since it's Week 2 within my 3 week cycle.  The only difference this time is I am still getting a bit of a queasy stomach in the afternoons.  Nothing that one or two of my 25 different medications won't fix in a jiffy.

Friday, August 8, 2014

Another Pill?

It's not like I don't take a handful of pills already everyday, but today, the doctor put me on Bactrim - an antibiotic.  

The tiny incision in my neck that was used to help put the Port in is very red and pus came out of it this morning.  The incision for the Port is GREAT - healed and looks beautiful - so not sure what's up with the neck area.  Just so many darn pills......

Today, I also wore my first turban scarf to go out.  Caitlyn requested I wear it to go out and I said, "but I look like a cancer patient."  She couldn't stop laughing.

I did manage to take a nap today too.  I slept for about 2 hours because I was fearful if I slept anymore, I'd be up again tonight.  P.S.  I bought Tylenol PM to help make sure I sleep tonight!

Five Friggin' Thirty A.M.

Sorry, didn't mean to offend anyone - but I find it so ironic that my last post was 4 days ago and I was stating how I took 3 naps, slept 6 hours straight overnight and was just overall... sleeping all the time.

Now today, I look at the clock at 5:30 a.m. and STILL haven't fallen asleep. When I sit up, my eyes won't stay open.  When I lay down, my eyes won't stay closed.

I didn't even take a nap today (well, yesterday) and was so excited last night when I was preparing to go to bed - "I'm gonna sleep good tonight" was my thought. HA!!!

The sun is coming up - I think I'll just go shower and get ready for the day.  I am looking forward to a nap in my future this afternoon :)

Monday, August 4, 2014

Feeling Tired But Good

Such a roller-coaster that chemotherapy puts you through.  One day you feel great and the next day, you just want to sleep all day.

Overall, I am so blessed and thankful that I do not have the side-effects that everyone warned me about.  There are so many medications to counteract the negative effects.  Which I suppose now makes me a junkie - but at least I feel well.

Saturday and Sunday I was able to take a few walks.  Not very far, but just enough to rev up my energy and metabolism.  I also walked to get my haircut and get a few groceries.  The weekend also included cooking a few dinners which I missed so much.

Today, was not that grand.  I think I took 3 naps.  It's not a "I feel bad" feeling.  It's just waking up and still feeling like you could sleep for over 8 more hours.  Sort of like if you wake up in the middle of the night to go pee :)

This week will probably consist of many naps while I look forward to feeling better next week.  The best part of this week is I realized I haven't shaved my legs in almost a week - and I don't need to.  Now, that is a great benefit to chemotherapy!!!

Sunday, August 3, 2014

3:00 a.m. And Awake, Again

Last day of my 3 days a month of steroids and I am awake again in the middle of the night.  But, tonight, I'm over the moon excited to be awake.  

I checked my phone and I see that my baby brother, Alberto, got engaged while I was sleeping.

Focusing on the positive and the future is difficult while travelling this journey.  I am so excited and have a new perspective tonight.  Keeping spirits up, maintaining some type of normalcy and embracing happiness is the key to anyone fighting this disease and tonight, I feel like I can do that with open arms.

I'm actually still feeling fairly well.  Obviously, since I'm still going through my non-sleeping phase, the fatigue hasn't set in - keeping my fingers crossed it passes over me this time :)  This weekend has been packed full with Doodles spending several days with me, my new hair "cut" and Bucky coming for dinner today.  Life is good!!

Alberto and Stacy, Congratulations and many years of happiness - I love you both!!

Saturday, August 2, 2014

What's Hair But A Pain To Style, Right?

Although it hasn't completely fallen out, my hair has been thinning and small bald spots appearing over the past few days.  My entire life, I had enough hair on my head for two people and now it is so thin I can see my scalp at every angle.

So daughter, Maria and I, went to Best Cuts to get the shortest buzz possible so I can have a bald head on my terms and not the terms of the disease.

Here's the chain of events:

One year ago this is how I wore my hair until February
A full head of hair - enough for two people even when this short

Thinning - Scalp showing
And it's coming off 

And more is falling 

After - walking home I felt I needed a coverup

And home - the final reveal  so much scalp showing

It was startling at first but not as bad as I thought.  Tears appeared but I realized they were tears of relief.  This is the final serious change, I think, I hope.

Friday, August 1, 2014

Have You Gone For Your Annual Check-Up Yet?

I know I have mentioned that at times my mind thinks of the craziest things.  Having a terminal disease does that, I guess.

After being guilty of not having a physicial for several years (and I mean many years), I find my concern for when was the last time you went a priority! Yes, I mean you, the person reading this.

For my females:
  • Gynecological Tests
  • Mammograms
  • Colonoscopy
  • Annual Physical
  • Bloodwork to screen for Diabetes
  • Possibly Genetic Testing for BRCA Gene
For the males:
  • Urologist Exam
  • Colonoscopy
  • Annual Physical
  • Bloodwork to screen for Diabetes
I would be asked these questions and immediately think to myself, "whatever, I feel fine, I don't have time for that."  Well, guess what - look at ME! It happened to me.

Yes I smoked.  Yes I didn't go to regular doctor appointments - so why wouldn't it happen to me. But the fact is, the cancer I have is Adenocarcinoma - the cancer that effects non-smokers. The fact is I had NO typical symptoms of a smoker with cancer - no coughing, no congestion, nothing - just a fever that in the winter anyone would think was a virus.

So the bottom line is.... if you haven't been to your doctor since July 2013 or earlier - PLEASE SCHEDULE YOUR APPOINTMENT NOW. Please do it for yourself and your family.  

Chemotherapy Round 2 - Done! (**Updated)

Round 2 - Done.  All my blood work was within normal ranges so I was able to take the treatment.  Well, the one exception was that my Platelets were high - but that is not so bad.

My baby daughter, Maria, went with me.  Pootie called from Colorado during the treatment.  It's great to have "them both there."  Maria even went and got us Subway for lunch :)

My Chemotherapy Partner for today <3

The morning/afternoon ended with Maria discovering I have 2 bald spots that have started - and she even was KIND enough to take Snapchat pictures to send to people.  What a kind soul she is :)

My hair has never been this thin - and there are several actual bald "patches" across the back. So far I can spike it to hide it but I don't think I'll get past a few more days of this.  

Then Maria decided to be a great daughter - She cooked dinner for her momma - chops marinated in olive oil, garlic, mint and onions - then seared with peppers and onions - served with Mac n' cheese!!

I expect the next 7-10 days to be on the rough end of the scale mostly due to fatigue - I tended to sleep alot the first week after the first treatment - 16-18 hours per day.  So I hope to update soon.  I may pop in and say Good Morning and Good Night at about 6:00 p.m.

Thanks for your continued love and support!!

Round 2 Chemotherapy Today

It's been 21 days since Round 1 and I can't get over the differences in how I felt over the 3 weeks.  Week 1 was exhaustion, Week 2 was slightly better, but Week 3 was great.  I felt "almost" like normal this week.  No naps = just little things still wear me out.

But today is Round 2, so I am preparing for the exhaustion to set in starting tomorrow.  The day before, the day of, and, the day after chemo I have to take steroids and they have a tendency to cause insomnia so that could be part of the extra sleeping the first week.

Maria (Doodles) is going with me today and will be with me until Tuesday to keep me company and share her shining and colorful personality. <3 <3