Thursday, April 26, 2012

Radiation - Day One

The radiation center actually called us last night and asked us to come in this morning for mom's first treatment.  I just want to say how incredible the staff there are.  Everyone is always so kind, they greet the patients by their name when they walk in and always have a nice smile and kind word.  They have a great system set up in the office.  Patients have a swipe card, similar to a credit card.  When you arrive in the office, you swipe the card and it alerts the radiation tech that you are there.  That way if the receptionist is busy helping someone else or away from her desk, you don't have to wait to check in.

The treatment was pretty uneventful.  We were in and out of the office in 20 minutes.  From now on, she has a set appointment at 9:45am every day Monday through Friday.

No glowing, super powers or spidey sense to report so far. 

One treatment down, Fifteen to go!

Wednesday, April 25, 2012

Consult with Radiation Doc

Unfortunately the weekend wasn't great.  It started on Friday.  We found out that the cancer has spread to mom's brain.  Once again, we knew this was a strong possibility but it's still very shocking and disappointing to hear the actual words.  We were hoping and praying that the results would show that the cancer hadn't spread.   I think we were all feeling a little negative, it just kinda felt like we aren't catching any breaks here!

Saturday, Sunday and Monday, mom was not feeling well at all.  Low blood pressure, extreme fatigue and nausea.  She felt so bad that she cancelled the procedure to have the access port put in.

On Monday night she started to feel better and developed a craving for Chinese Food.  On Tuesday she felt a little better still.  Her blood pressure came back up and she was able to be up and about a little more.  Tuesday night she had a hankering for Taco Bell.  I'm sensing I might be making a few food runs in the near future!  The thing with Chemo is, that some days you might not be able to eat at all and other days you will want to eat everything in sight.  You have to make the best of the good days after all!

Today, we met with Dr. D., the radiation doc.  Obviously the news that the cancer has spread to the news is not good but he still feels optimistic that the cancer will respond to treatment.  There is not really a cure for this type of cancer - treatment is meant as a way to prolong life.  He did not want to go into specifics as far as expected life expectancy because he said that every patient responds differently.   He said the average is about 18 months.

Although we all know that anything can happen at anytime, it's very shocking to hear a time limit put on someone's life.  Especially someone you love. Mom has handled the news with a lot of dignity and grace.  She is amazingly strong.

So the plan at the moment is to continue chemotherapy as scheduled.  She will start radiation to the brain in the next day or two.  They don't like to do radiation on two areas at once, so since the chemo is treating her lungs, they are postponing radiation to the lungs for the time being.  This course of radiation will be approximately three weeks.

Our day ended on a good note though.  It was a beautiful day today!  Mom had mentioned that she thought her nails looked bad because she hadn't filed or painted them in a while.  I drove her to a local nail salon and treated her to a manicure and pedicure.  She had never had a pedicure before and LOVED it!  This particular salon has massage chairs, so she got a nice back massage while she got her feet done.  ( I may have created a monster with this whole pedicure thing!)



So keep praying and keep sending those positive thoughts her way.  And if you would like to drop her a card in the mail, that would totally make her day!

Wednesday, April 18, 2012

Chemo - Day 3

On today's menu - a short chemo day and a pet scan.

I picked mom up around 10 am.  Not feeling great today.  Very tired and nauseous and coughing a little more than she has been the past two days.  We got to the infusion center and it was crazy busy.  It took them about 10 minutes to finally get to her and hook her up.  Just fluid and Etopside today. Everything went along smoothly.  She read for a little while and dozed a little bit.

Kinda funny story I'll share here.  Now keep in mind, even though the infusion center is really busy, and there are patients and family members, and nurse's constantly moving around, it is fairly quiet.  A lot of the patients sleep while getting their treatment and everyone is pretty respectful of the fact that some patients don't feel well.

In the chair to the right of mom was this really old lady.  Apparently she had been brought in by a home aide nurse who was sitting in the chairs in the center of the room.  As I already mentioned, she was old.  She didn't have any teeth or dentures and her mouth was so sunken in, you could barely see her lips.  Anyways, she was eating a sack lunch.  Sandwich and some cheese puffs or something.  She was chewing in this huge motion like a cow masticating,  and food crumbs kept spilling out of her mouth.  Mom and I did our best not to look at her while she was eating.  As soon as she was done, she let out this huge burp.  Super loud.  But she didn't even seem fazed and didn't try to excuse herself or anything.  Mom and I just looked at each other and tried not to laugh.   She seemed to settle down quietly after that.  Mom was kinda dozing in her chair and I was reading my book when all of a sudden we hear this blood curdling yell "Nurse!!!"  I'm telling you, I almost fell out of my chair, she startled me so much.  Her home aide nurse came running and the lady started pointing at her IV bag.  It was empty.  (Which either means you are done, or ready for your next bag of  whatever cocktail you happen to be receiving.)  In any event it's not a big deal, cause the nurses constantly walk around checking on everyone.  So that was our little drama for the day!!

So chemo was done about 12:15p and she had an appointment for the PET scan at 1pm.  When went outside and sat in the sunshine for a few minutes and then went back inside and registered on the off chance that they could take her early.  They were able to take her early and we left the hospital about 2:15 pm.  Mom was starving so we stopped at Taco Bell and got a Burrito.  Guess it's a good sign that she was hungry.  (Wanting Taco Bell when you don't feel good comes from Danielle.  Ciara is the same way!)

So tomorrow, she just has her Nuelasta shot which is supposed to help her create healthy new blood cells.and boost her blood counts.

Assuming nothing else happens between now and then, her next appointment is on Tuesday with the surgeon to get her Access Port put in.  Yea!  No more needle sticks!

Tuesday, April 17, 2012

Little Rudolph napping

Ella got a cold last week.  Her nose constantly streamed.  So she constantly wiped it with a tissue.  Her poor little nose and lips were beet red.


Of course this didn't seem to keep her down at all.  She still managed to run around with what seemed to be the combined energy of three children.

Until all of a sudden..................
I can't remember the last time she had a nap.  Ahh...so cute when they are sleeping!

Chemo - Day 2

I went to pick up mom about 9:30am and to my surprise she was sitting on the couch dressed and ready to go.  Looking all cute with makeup on and everything.  She was even eating a salad!  (Weird breakfast I know, but I was just happy she wasn't horribly nauseous)

So we headed up to the hospital.  It was a beautiful day today, so she decided to have a little walk from the back of the parking lot to the hospital.  She definitely got winded but made it all the way.  First on today's to do list was an MRI.  We went to the registration desk and were told that her MRI was scheduled at the imaging center not at the hospital.  So I went and got the car and then we drove next door to the Imaging Center.

Everything went fine with the MRI.  They left her IV in, so that they wouldn't have to put another one in for her Chemotherapy which we were heading to next.  We went back to the hospital, to the Infusion Center.  It wasn't very full today so they got her started right away.  A little bit of saline and then her Etopside followed by some more saline.  They didn't give her both at the same time cause her veins are so narrow, but it was still much quicker than yesterday and we were out of their in an hour and a half.



We talked more with the nurse about having a port implanted.  Mom decided to go ahead and get that done so the nurse contacted Dr F. to start that process.  She will more than likely get that done right before Cycle 2 of her Chemo.

So all in all a pretty good day.  The nurse cautioned her that the further she got into the treatments the more they would affect her but she is trying to enjoy the good days.  You can't ask for more than that!

Tomorrow:  Pet Scan and day three of Chemo.

Monday, April 16, 2012

Chemotherapy - Day 1

Phew!  Long day today!

I picked mom up early this morning.  She was not feeling great.  Tired and nauseous.

We were at the Infusion Center by 8:30am.  They immediately got her IV hooked up, but her veins weren't great because she was a little dehydrated, so they had to put it right in the crook of her arm.  Which meant she had to keep her arm straight the entire time. They started out by taking her blood and then giving her some Saline, Steroids and Anti-Nausea medicine.

A nurse came to speak to her about participating in a clinical trial.   This trial is more of a research trial.  It will help them determine how different therapies work for different people and the effects it has on them.  Hopefully they can use this research to come up with better, more effective treatments.  Pretty much the only thing she has to do to participate in the trial is give a few vials of blood at the beginning of each Chemo cycle.  She decided to participate, in the hopes that better treatments can be developed.

Next they gave her a drug called Carboplantin.  She will get this once each cycle.  Everything was going along great at this point.  No adverse reactions and she actually had perked up quite a bit and ate some lunch.  Next, they switched her to a drug called Etopside.  She will get this everyday she has chemo.   After a few minutes, she noticed that her arm hurt a little and we noticed that it was quite swollen.  Turns out that her vein blew, therefore fluid was leaking directly into her arm.

They quickly took the IV out of that arm, placed it in the other arm and hooked her back up to the Etopside.  They elevated her poor swollen arm and thankfully the swelling subsided quickly and there wasn't any residual pain.  The nurses did discuss with her getting a port.  Her veins are pretty narrow and Chemotherapy has the tendency to make them worse.   The downside is that she would have to have general anesthesia again to have it implanted.  It's a quick surgical procedure (about half an hour) done outpatient.  The upside is that she wouldn't have to be stuck repeatedly for IV's and blood draws.  It would also allow her to have both her arms free while she receives treatment.

So finally about 2:30pm, six hours after we got there, chemo was done for the day!  They gave her some anti nausea drugs to take home with her and we headed home.

She was a trooper the entire time and actually looked great.   She had some color in her face and felt pretty good and was not coughing the entire time.  When we left the hospital she actually commented that she was starving.  My sweet friend Elaine brought her (and my family too) a spaghetti dinner and she had two helpings of that.  So Day One ended pretty well.

Everyone at the Infusion Center was so nice.  The staff were incredible and attentive.  I swear they never stopped moving - checking on the patients, checking IV bags, checking blood work and answering questions.

The other patients all seemed to have the routine down and would say hello and check up on each other.  The chairs for the patients in the Infusion Center are recliners and many patients get comfy and go to sleep.  A blanket is a must there - it's freezing in there!  I had a scarf and a cardigan on and was still a little chilly!

To sum it all up, Mom said "That was not bad at all.  Nothing like I thought it would be!"

Tomorrow MRI and Chemo again.

Thursday, April 12, 2012

Meeting the Doctors

Today was a busy day, with lots of information to digest.

(A lot of technical info in this post so I don't have to repeat all the info 50 times for the family)

We started out by meeting mom's oncologist Dr C.  We immediately liked him.  He has a very warm personality, is very patient and explained everything.  We especially liked that he was very familiar with her medical record and already had a plan in place.

He described the cancer as a soft tissue mass of the mediastinum.  It it mostly wrapped around her windpipe.  He said that 99% of the time, this cancer comes from smoking.  Ironic since she quit smoking about 25 years ago!

They are in the process of scheduling a few more tests, a PET scan and an MRI of the brain.  But while we are waiting for the tests, they are going to go ahead and start her Chemotherapy treatments on Monday. 

Chemo will consist of Carboplantin and Etopside along with IV fluids to keep her hydrated and anti nausea medicine.   Each cycle will consist of Chemo on Monday, Tuesday and Wednesday.  Monday will be a long day.  Approximately 5 hours.  Tuesday and Wednesday will be about an hour and a half.  On Thursday she will go in for a shot of Neulasta.  This helps stimulate the growth of healthy white blood cells in the bone marrow.  Then she gets two weeks off, and repeat the cycle again.  She will more than likely do six cycles.

Expected side effects are hair loss (usually starting around the third week), nausea, loss of appetite, and weight loss.  There are a slew of other side effects that are possible, but these are the ones that he most commonly sees in his patients.  She will be donating a lot of blood to infusion center nurses who will be testing it all the time to see what might be cropping up.

Next we saw the Radiologist Dr. D.  Just like Dr C, we liked him immediately also.  He showed mom the MRI of her throat and lungs.  It seems amazing she can breathe at all when you look at the film.  The mass is approximately 7cm from front to back and 6 1/2 cm from side to side.

Radiation will start after her first cycle of Chemo.  She has an appointment set up to go back in, and go over her treatment plan and do mapping.  This is where they decide exactly where the radiation is going to go.  Radiation is a very targeted treatment vs chemo that goes through the entire body.  Then she will have the first treatment at the end of the month.  Radiation treatments will be Monday through Friday for six weeks in a row.  This will only take about half an hour in the office.  Approximately 10 minutes of low dose radiation.  This is supposed to help her tolerate the treatment better than if she just received one great big dose.  He doesn't expect too many side effects right away other than a sunburn like reaction on her skin.  The further along the treatment gets, she may have trouble swallowing and a sore throat.  Usually all side effects go away approximately two weeks after treatment is completed.

The treatment may change if the MRI of the brain shows that the cancer has spread there.  If the MRI of the brain is clear, she will have radiation to her brain approximately a month after all her cycles of chemotherapy are done.  This is done as a preventative measure.

So, I think that's everything.  Obviously it was a lot of information to take in, but it's nice to have a plan in place.  She actually said she was excited to start the chemotherapy so that she can hopefully get some relief from the coughing, wheezing and difficulty breathing.

I will try and update here as much as possible, as it is hard for her to talk on the phone a lot.  If I left anything out, feel free to email me and ask.

If you google this type of cancer you will find a lot of negative information.  Her doctors are being very optimistic and we are choosing to focus on the positive.  I would ask all of you to please do the same.

Keep the prayers, good karma and positive thoughts coming our way!
Clair

Wednesday, April 11, 2012

The "C" Word

Unfortunately I don't have a witty way to start this post.  I have been sitting here for 5 minutes starring at the blinking cursor and I really need to get to bed soon, so I guess I had just better dive in.

Mom has been sick with a horrendous cough since Thanksgiving.  At first we thought she had the same crud everyone else seemed to have.  But she got worse.   The doctor thought she had severe asthma.  She had asthma as a child so this explanation seemed to make sense.  Asthma treatments weren't working so then the doctor started investigating more.  At this point she could barely walk or talk without wheezing and is constantly exhausted.  After an MRI detected some swollen lymph nodes in her throat and some nodules behind her breastbone, she had a biopsy.  The word Lymphoma was tossed around. 

Last Thursday, April 5th,  she spoke with the doctor over the phone.  He told her the pathology result showed small cell lung cancer.  Even though we knew cancer was a possibility,  I can't describe what a shock hearing those results was.  The doctor didn't give much information at that point and said he would see her on Tuesday for a post op appointment.

Yesterday we went to the doctor.  He confirmed what he had already told her over the phone and let her know that the next steps would be to see an Oncologist and a Radiologist.  Surgery is not an option for this type of cancer and Chemotherapy is that standard course of treatment.  It will most likely be coupled with radiation.  She will also have some other diagnostic tests to see if the cancer has spread anywhere else.  The doctor said he is hopeful that the chemotherapy will shrink the tumors that are pressing against her trachea and then she will be able to breathe a lot better.

So tomorrow we are off to the radiologist and oncologist to see what the plan is.  Prayers, positive thoughts and any good karma you can throw our way are greatly appreciated!

Tuesday, April 10, 2012

Our house is nearly done!

Chris was in Jacksonville last week so he swung by the house for a little peek.

It's fun to see the changes that have been made in the week since we've been gone!

Sold! To us!  (Well sorta, we haven't closed or anything yet)

The sod is down!

They added the Ledgestone to the bottom of the house.  Love the color and the way it looks.

The staircase has been put in and the carpet laid down.  Love the staircase!  Much better than the temporary pipe railing they rigged up.

Chris will be back in Jacksonville again at the end of the month.  Hopefully they will have installed the kitchen and he can take some more pictures of the inside.

Wednesday, April 4, 2012

House Hunting

So, several months ago, Chris' company Network Solutions was bought out by Web.com  Unfortunately the company decided to shut down the offices here in the St Louis area.  Fortunately, they offered Chris a promotion.  However, this also meant we would need to relocate our family to Jacksonville.  So, when the kids finish the school year, we're off to sunny Florida.

We looked at six gazillion homes on the internet.  We even put in an offer on a great house in a great location that we hadn't even seen.  There was multiple offers and ours wasn't accepted.  It seemed like no sooner did I let the agent know we were interested in a house, that house would be under contract.   We weren't gelling with our agent.  I was started to thing we were going to have to live in a tent.

With a new agent, and a list of homes to go see, off we all went to Florida in search of a new home. 

Wow!  I never knew house hunting could be so completely exhausting! 

We looked at so many houses I could barely keep them straight.  One house was great but it was a short sale and we need a firm move in date.  Another great house, this one a bank foreclosure, had horrible stains all over the carpet, another home didn't have enough natural light, the next house smelled like dog.  We considered new builds but the first one we looked at had tiny bedrooms.  The second one was out of our price range.

We finally checked out a different community that was still in the school district we want the kids to attend.  Immediately all of us loved the house but at this point we still had some other houses to look at.  The next day we spend most of the day looking at houses that were beautiful but we weren't getting the same vibe as we did before.  We went back to the house again to get a second look and we immediately felt like this was the right choice.  So we went in and signed the papers.  Our fabulous agent got the builder to throw in a whole bunch of extras too.  We didn't have enough time to have our home built from scratch so we opted for a home that was already in the process of being built.  It should be ready at the end of April.
 
So even though it was exhausting, we did it!  We have a home to move to now.

Thank goodness.  I am not a camper!