Update on Dad:

He has been to see a specialist regarding his MDS and worst case scenario is that the treatment may not work and it can turn in to lueukemia.  As most of you know that is not a good thing.

His MRI showed that his hip socket has basically collapsed from the treatment for the tumor.  The tumor is still there but they don't know if it's dead or alive at this point.  He is walking with a cane as he can't put any pressure on it due to the pain.

He will more than likely have to have blood transfusions bi-weekly for the rest of his life as his cells are not "playing nicely" with each other.

All we can do at this point is keep praying that this works and that he can regain his strength.  It's killing him to not be able to do the simple things that we all take for granted without getting winded and wiped out.

Dad had his first infusion for the MDS yesterday and to say the least, it WIPED him out!

It looks like a nasty little drug.  Vidaza:  An anit-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug.   The common side effects are:

1. Nausea
2. Low red blood cell count (Anemia)
3. Low platelet count
4. Vomiting
5. Fever
6. Low white blood cell count
7. Diarrhea
8. Fatigue
9. Injection Site Redness
10. Constipation
11. Ecchymosis, petechiae (Bleeding under the skin...had to google it :-)

Like he needs any more going on than he already has!  Mom is working the U of A games right now and has been busy so it's harder than normal.  Dad has to go in every day for infusions and possibly blood transfusions if necessary for 7 days straight.  You know that with them pumping that toxic poison into him is going to make him feel like crap!

Today is a day that he needed a transfusion as his counts had all dropped very low.  It makes you wonder why this kind of thing always happens to the people that would give you the shirt off of their back.  I have to say that my Dad has the biggest heart of anyone I know.  He does what is necessary to take care of those that he has obligations to no matter what.  He does get burned more than someone who is focused on themselves but I guess you take the good with the bad huh?

I know that getting angry at the circumstances won't do any of us any good but it's so hard not to.  I just have to have faith that there is a reason for everything.  

Keep him in your good thoughts and prayers!  I'll keep you all posted!

Kim

Update on Dad

I haven't updated this for so long but thought that it was by far the easiest way to let everyone know what is going on with Dad.

He has been so run down and had ZERO energy.  We found out this week that he has MDS.  What is MDS?  This is what I found on the American Cancer Society site:  

What are myelodysplastic syndromes?

Myelodysplastic syndromes (MDS) are conditions that occur when the blood-forming cells in the bone marrow are damaged. This damage leads to low numbers of one or more types of blood cells.

Normal bone marrow

Bone marrow is the soft, inner part of some bones, such as those of the skull, shoulder blades, ribs, pelvis, and backbones. Bone marrow contains stem cells that divide to form new cells. When a stem cell divides it makes 2 cells: one cell that stays a stem cell, and another cell that can make other kinds of blood cells. There are 3 kinds of blood cells: red blood cells, white blood cells, and platelets.

• Red blood cells carry oxygen from the lungs to the rest of the body and carry away carbon dioxide.
• White blood cells help the body fight infection. There are many types of white blood cells.
• Platelets are pieces of cells. They are needed for the blood to clot. They help plug up damaged areas of blood vessels caused by cuts or bruises.

Myelodysplastic syndromes

In MDS, some of the cells in the bone marrow are damaged and have problems making new blood cells. Many of the blood cells that are made by these damaged cells are not normal. The abnormal blood cells die sooner than normal cells, leaving the person without enough normal blood cells and with low blood counts.

MDS can turn into a fast-growing cancer of bone marrow cells called acute myeloid leukemia. This happens in about 1 out of 3 people with MDS. In the past, MDS was called pre-leukemia or smoldering leukemia. Since most MDS patients do not get leukemia, these terms are no longer used. Now that doctors have learned more about MDS, it is thought to be a form of cancer.

The American Cancer Society document, Leukemia: Acute Myeloid (Myelogenous) has more information about the leukemia that develops in some MDS patients.

Types of MDS

The system used to classify MDS is known as the WHO (World Health Organization) system. This system divides MDS into 7 groups. The group depends on how the cells of the blood and bone marrow look under a microscope and the presence of certain changes in the chromosomes of those cells. Because the differences can be very small, doctors might not agree about which group a patient’s disease belongs in. Your doctor can explain to you the exact kind of MDS you have.

Cases of MDS can also be grouped based on the cause of the disease. (This is called clinical classification.) If no cause can be found, it is called primary MDS. It is called secondary MDS when the cause of the disease is known. Secondary MDS is often called treatment-related, because the most common cause is earlier treatment for cancer. Secondary MDS is much less likely to respond to treatment.

This is  the lovely effects of Chemo for 3 years.  They gave him a blood transfusion yesterday and starting on Monday he will have infusions of drugs to help treat it.  From what I understand his counts will probably dip down before they go up so I'm sure he has some rough days ahead of him.

He is still coming in to work when he is able.  He is such a strong man it's unbelievable!!  My Mom has been dropping him off at my house and I take him into work with me and then either Bill or I take him home.  

My Mom is being a trooper!  I know she is tired, scared and most of the time irritated with him.  He can be quite a bear when he isn't feeling good.  Not intentionally but sometimes he gets snappy and grumpy.  I've had visions of Duct taping him in the closet just to get some quiet ha ha ha!

Bill and I had a Birthday BBQ for both my Mom and my Dad since their birthdays are 13 days apart.  We surprised them and invited some of their friends to help celebrate.  It turned out really well and I think they both enjoyed it.

I'll keep you all updated as he starts his treatment next week.  Please keep him and our family in your prayers!  

Kim

Happy New Year!



Happy New Year everyone!  I hope that 2013 brings everyone Health & Happiness!

We spent Christmas at Mom and Dads house.  Mom got some tamales and made enchaladas...yummmmm!  It was a nice day.  My company (Mike and Michelle) were both stuck at my house with a cold so they weren't able to spend the day with the family. :-(

It has been a time since I have updated most of you on Dad's condition.  I was working a seaonal job as well as the two other jobs.   I apologize for being so late in doing so but here is a recap of what has been going on.

Dad went in for his scans and his tumors have shrunk!  Whoo Hoo!!  From what I understand, the lungs showed the biggest improvement.  The external tumors really didn't change but as he said, they can cut those suckers out.

He and Mom did ring in the New Year in the ER at University Medical Center.  He had a fever of about 101 and per the Cancer Center, anything over 100 mandates a trip to the ER.  His white blood cell count was at .08 when he arrived and by last night was only at .07.  Normal range is 4.25-10.25 so as you can see it was EXTREMELY low. 

He did call me last night to give me a "to-do" list for work so I know he was feeling better.  I spoke with him this morning and he said he was just wiped out.  I banned him from work until next week as Jen's family has had a bout of the flu going around and I am still stuffy.  The slightest illness is extremely serious so why even chance it? 

Let's hope that we continue to get good news!!  I will try to update more frequently now that the Holidays are over.

Kim

I am such a slacker! Here is the update on Jerry...

Sorry for not getting this posted earlier.

Dad went in for his scan results last week.  Just to get everyone up to speed, he had a scan done prior to the treatment so they could gauge the treatment and see if anything was shrinking/growing etc.

His scan results were good!  The tumors have not shrunk but the good news is...they didn't grow either!!  I know we were all sick waiting to hear the news, not knowing what the results would be.

We did find out some interesting information regarding his blood counts.  I guess as adults the majority of our blood cells are regenerated in our pelvic areas.  Since Dad had the radiation done after the other tumors were removed in the upper thigh area his cells don't regenerate as quickly as most.  They are going to continue to give him the Marrow Booster shots to make sure his counts don't drop too low.  The last thing he needs to get sick, it could kill him if his counts were down and his body couldn't fight it.

The treatments really wipe him out physically but let me assure you...his phone dialing finger still works!  We get calls if he isn't in the office and he still calls his clients etc. from home.  I guess some things will never change.  I would worry if he wasn't always on top of everything.

He is getting used to having no hair.  He wears a ball cap most of the time be is slowly coming out and about a little more without it on.  I think he looks handsome bald but he doesn't listen to what we have to say. 

I did find the PERFECT Christmas gift for him!

Hee Hee Hee!

Everything seems to be on track

Dad had his counts checked last Thursday and his counts were up!  They were higher than when he started the Chemo so they scheduled his next treatment for the following Monday. 

Monday came and his treatment went well except for the fact that they were having some issues with his port.  It didn't want to give any blood out of it. They ended up keeping him there to run something through it to try and clear it. Hopefully it will take care of the issue.  If not they will have to go back to UMC to have it checked out.

He has noticed that his hair is falling out.  By this morning, I think he had enough so he is planning on shaving it off.  I keep telling him that it's just hair and it's better than the alternative but I totally understand how it bothers him.  He has always had really nice thick, wavy hair which I was lucky enough to inherit!!  I asked him if he wanted me to shave my head too...I have to say that I was a little relieved that he said no.  I would have done it though if it made him feel better.  We could be the cone heads here at work lol!!  He's going to really have put some sunscreen on his noggin...he always gets really red when he's in the sun and I am sure he doesn't want to have his head burned!

He seems to be tolerating the meds a little better than he was in the beginning.  He is super tired but he has been behaving...well that might be stretching it but at least he's taking it a little bit easier than he usually does.  Mom found a guy that came over and trimmed the yard up as it's just too much for Dad to do right now.  Of course he was paranoid it would look like the moonscape when he got home.  I haven't seen it but since he didn't mention it I am assuming it looked good.

Went to the Dr. today and got my flu shot, I don't want to get him sick...now I just need to get everyone else here at the office to get one!  You don't realize how fragile your immune system can get with the chemo.

It's Wednesday so we are on the downhill slide!  I'll post again soon!

Thank you to everyone that has followed the blog and sent such nice notes to Dad!  I know he has so many people out there fighting for him and it makes me so happy to see that.

Treatment Postponed

Dad went in this morning for his treatment.  They did his bloodwork and his counts are too low for him to receive treatment today.  His platelets should be around 1050 and were only at about 105.  His white blood cell counts should be around 300 or so and were only at 100'ish.

He isn't allowed to play with others...I guess we're a "germy" bunch!  He was going to go home today and try to get some rest.  He said at least he knows why he has felt so weak the past few days.

If he comes in tomorrow we aren't letting him in the door without a mask on.  If he were to get sick it could be really, really bad. 

Here's hoping that his counts go up by next week and he can continue treatment!!

Week 1 down

***Didn't get this out on Friday***

Well it's Friday and it ends the first week of Chemo!

Monday was the full blown treatment; both the regular chemo and the trial study drug.  Mom went down with him to the Cancer Center.  He ended up being there all day and was pretty worn out by the time he got home.

Tuesday wasn't as bad, he said he felt tired but pretty good.  He of course showed up for work!  In the almost 12 years I have worked for my Dad he has NEVER called in sick! 

Wednesday he called me on the way to work and said "I just woke up."  I know it's hard for him to not be at HIS business but Bill and I will do whatever it takes to make sure that his business runs smoothly.  He showed up about 8:00 but had to leave at to get his bloodwork done at about noon. 

Thursday:  Mom had to go out of town to do the U of A Wildcat trip.  Dad called me again on the way to work and said that he was going to be late.  He said that he had gotten sick and was trying to get in as soon as possible.  I was a little upset that he didn't get his anti-naseau meds.

We did find out that there is a HUGE price difference between Pharmacies.  They originally called Walgreens and were quoted a price of $389.00 for a months supply.  I called around and finally located it at Fry's for $41!!  Talk about a rip off!

He seems to be doing well with the medications so hopefully he'll continue to have an easy time with it all.  We'll see how the weekend goes!

Treatment has started...

Dad went in today to begin his Chemo treatments.  I got a text message from Mom saying that he got the experimental drug too!  Yay!!!  I still can't figure out why he wouldn't have gotten it with so few people that have this type of cancer...anyway, that is beside the point.

Got a phone call from him this afternoon, he sounded a little tired but better than I had expected.  He had to go in at around 9am to get blood work done and then start the "drugs."  I think that he said that the trial study drugs were first and then they would do the sarcoma chemo.  He said they had given him a ton of meds to keep the nausea away...of course he had to throw in "a drug addict would be envious of me right now." LOL Then of course gave me the information to order some T-astrigals for one of our customers :-)  That's my dad...always in work mode.

He said he felt ok, a little wiped out.  Not too sure whether that is from the meds or just the entire experience.  He gets to have tomorrow off and then go back in on Wed. and Thurs. to have some blood work done and then start all over again on Monday. 

I am hoping to see him walk in the door tomorrow morning!  Work just isn't the same without "twinkle Toes" there (as Jen calls him).  I made him and Mom promise me that they would both get some rest tonight.  I know how mentally, physically and emotionally tired I was today, I can't imagine what they are feeling right now.

Please continue to pray for my Dad.  This whole thing has made me really re-examine my life and what is important to me.  I love my family more than I ever thought was possible.  I have an awesome set of parents who I am so fortunate to have daily interactions with and I wouldn't give that up for the world.  Take that moment and call your parents or stop by and see them...you never know what the future holds.

Life isn't always what you expected or planned for.  I truly believe that every single thing that happens is for a reason.  We may not understand it at the time but I truly believe that God has a plan for each and every one of us and we need to look at our situation, reach down and pull our boots on and say "Go ahead, make my day!"

Getting Ready to start

Dad went in on Friday to have his port inserted.  He managed to convince the nurse and the Doctor to put it on his left side because he shoots his rifle on the right side! What a ding dong!  They got him in much later than they were supposed to but I think he enjoyed watching one of the Sheriff's deputies sleeping while he was supposed to be watching an imate there to get a port put in.

The port is about the size of a quarter and sticks out about 1/2".  He said if he was a drug user he'd have it made...no track marks!  He said he could just inject his drugs right into the port. LOL!

He had his PET Scan this morning and he will begin his Chemo on Monday of next week.  I know he is worried, you can see it in his eyes.  I keep trying to tell him to be positive, that is one of the best things he can do at this point.  He is in good health other than the cancer so I am hoping that he will tolerate the Chemo and still be able to be a part of everything here at work.

I'll let everyone know how he's doing after his first treatment!

K

ECG, Port and Treatment

Just a quick update.

Dad is in this morning for his ECG to make sure his ticker is working fine before they insert the port in his chest on Friday.

He of course said that he needs to convince them to put it on his left side because his rifle sits on his right side when shooting!!  He said that the nurse already told him that there is a guy that has one that they did on the other side so he could carry his golf bag lol!  Only my Dad...

If everything goes according to schedule he will begin treatment on Monday or Tuesday so please take a minute to say a quick prayer and send good vibes to him!

I'll update when things get rolling to keep you all posted.

Thanks!

What in the heck is myxoid chondrosarcoma??

Myxoid Chondrosarcoma...those two words are the ones that have turned all of our lives upside down!

It seems that no matter where I look I get the same general definition of it:

  "Extraskeletal myxoid chondrosarcoma (EMCS) is an uncommon clinicopathologically well-defined tumor, but its pathogenesis and biologic behavior are poorly understood. "

Makes sense to me!  Not!!!  All I know is that my Dad has this virtually unknown cancer.  This cancer never goes into remission which means that he will have to fight it for the rest of his life.  I do know one thing:  CANCER SUCKS!!!!

 

 

You go your whole life knowing your parents will go before you (God willing for them).  I watched my Mom lose her parents and although I was young I still hate myself for not being closer to both of them.  I loved my Nana (my Mom's Mom) soooo much!!!  My Grandpa too but I was always closer to my Nana.  I am so afraid that I disappointed them with my actions before she died.  They were nothing bad but typical "pre-teen" antics that I am sure they didn't agree with. 



 

I can only hope that I haven't disappointed my parents.  I haven't always made the most logical "socially accepted" choices in my life.  I have always made my choices based on what I felt was right...screw society and what it told me...something I think my Mom and Dad taught me from an early age, although they may not agree with that lol.  It may have come back and bit them in the butt in later years but I am one tough woman who knows what I want and will fight to the end of the world for it.  That I know, I can thank my awesome parents for!!!

 

I hope that it doesn't seem that I am taking over the blog for Dad but I am who I am because of him and my Mom!!  I love my Dad more than anything...I love my Mom more than anything...I had the pleasure of growing up and having the best childhood that anyone could wish for. 

 

I remember being in the 4th or 5th grade standing in the hot lunch line when my neighbor Mando teased me and told me that my Dad was a plumber!  My Dad was in construction, he wasn't a "plumber!!"  I took off after him (mind you, I was probably 5'6" at the time...a freakishly tall child and he was maybe 5').  The principle grabbed my arm as I chased him through the lunch room and I pulled my arm out of his grasp, which I know pissed him off.  I ended up spending the next week eating lunch in Mr. Morenci's office...little did I know at the time how much plumbers made!!!  I would have just sat back and laughed...nonetheless, he was insulting my Dad and I was gonna beat him down!!!  I still have that attitude!!  You mess with my family or anyone I love, and you face the "wrath of Kim!" 

 

Cancer is going to have to face the Wrath of Kim now!!  I will do anything in my power to eradicate this awful, cruel disease that takes the "cream of the crop" for it's own selfish needs!

 

Cancer....watch out because I can run much faster than I could in 4th or 5th grade and I will NOT stop chasing you for attacking my Dad!

 

 





The verdict is in...

What Cancer Cannot Do
Cancer is so limited....
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

Author Unknown

Dad went to the Oncologist today to determine what exactly would take place and what treatment they would pursue.

Of course when I call him to see what was said he told me "I am going to die."  Knowing him I said "we are all going to die you smartass, what did the Doctor say?"

The doctor basically told him that the type of Sarcoma (Lipo chondrosarcoma) that he has is probably one of the most rare cancers known.  The odds of one getting this particular type is 1/1000.  The chances of winning the lottery multiple times would be better than a person getting this type of cancer (yep...he should have been playing the lottery all of this time).  The Dr. did say that there are only about 50 people (I am assuming adults but don't know for sure) in the US that have this type of cancer so he is a shoe in for the clinical trials that are offered. 

The long and short of it is: 

• Surgery on his thigh is pretty much a waste of precious time.  The Dr. said that he would have to be completely healed before he could even be considered for the Clinical Trials.  He also said that the tumor will be a good point of reference.  It will allow them to keep an eye on it and see if it stops growing or starts shrinking after trying the meds.
• Biopsy on his lung is pointless.  He doesn't have "Lung Cancer" he has sarcoma tumors in his lungs.  That is pretty much a given so why put the stress and strain on his body to run tests to get the answer that they all pretty much know already.
• He will have to go through Chemotherapy.  Yes he will lose his hair.  How much?  No one knows until it happens...I chuckle thinking of my Pops with no hair!  I think he'll look cute though.  If not, we'll get him one of those baseball hats that have the hair attached heeheehee.
• He will lose weight and have fatigue.  Crap, does this mean that he's going to be grumpy at work all of the time?  Great...I am buying a nerf gun this weekend, one sarcastic remark and he's getting it!! 
• He has a terminal illness and will never be cancer free :-(  This cancer never goes into remission. 
• If all goes right, he will be around to drive us nutty for quite awhile! 

I did find a really good website for the Sarcoma Foundation of America at http://www.curesarcoma.org/

I guess my new mission is become as educated as possible about Sarcoma! 

In closing I can say that this hasn't killed his appetite any!  We are meeting for chimichangas later! Whoo Hoo!!

I will update again after he decides what direction he wants to take and we can all take this unknown journey with him!

Have an awesome weekend!!  Don't forget to spend time with those that you love!
Kim

Here we go again....



For all that followed my Dad's cancer battle a few years ago I am not happy to say that we are once again in the battle.

My Dad had a pretty rare cancer a few years back.  He had two tumors removed from his upper thigh area and went through Radiation treatment.  As directed, he followed up on all of PET Scans and Dr.'s appointments after that and we were all pleased to see that there was no cancer!

Dad went in for his routine PET scan a few weeks ago.  He received a call back stating that they needed to do a follow up MRI scan as well.  As you can imagine we all were sitting on pins and needles wondering why they needed a follow up.  My Mom had been in California as her Aunt had passed away and she was tending to all that was needed there.  I told Dad that although she was out of town he needed to get in NOW and not to wait one minute longer.   My Mom didn't know what was going on but managed to get an earlier flight so she could be at the appointment.  As soon as she saw me walking in with Dad she knew something was up...we were busted!

I of course am his daughter and worry about him way more than I let on. He is not only my Dad but he is my Boss and the one I lean on the most!  I spend 5 days a week with him and experience a side of him that not many children get to see. Let me say...sometimes it's not pretty! I see a business side of my Dad that still, to this day leaves me in awe of him. Oh, don't get me wrong...he drives me nutso most of the time (well about 95% of the time) but it is incredible to see a man that has survived one of the biggest economic depressions that this country has seen in years and still has a thriving business. He has managed to keep ALL of his employees working and bringing home a paycheck even if it means (to my Mom's dismay) using personal funds to get us through.  He should be so proud of himself as he started Sonoran Products, Inc. by himself using a card table as his desk.  He was the salesman, delivery driver and custodian for many months until he hired others.  Although I don't tell him enough, my Dad is my "Superman."

Back to important issues...He had a biopsy done on his thigh and it came back malignant.  The MRI also showed that he had some spots on his lung that hadn't been there on the last scan.  There were, I believe two spots on his other lung that had been there for awhile but had not grown or changed.  The other spots were new however and the others had grown slightly. 

From what we know right now, he will have the tumor removed surgically and follow up with radiation.  They need to do a biopsy on his lungs but from what I understand they are more than likely Sarcomas as well.  He is looking at Chemo for his lungs and may have to be on it for the rest of his lifetime.  From what I understand (and believe me...I am NOT a Dr.) this type of cancer is brutal and they cannot detect it on a PET scan until it is about the size of a pea.  He may have dozens of cells that are just waiting to grow therefore the lifetime Chemo, to try and keep it from making it's way to a tumor.

For all of you that know my Dad Jerry, I will try and keep everyone updated through this blog.   For those of you that know my Dad WELL, you know that he is a huge Dirty Harry fan.  For those that are staunch Democrats (or Republicans for that matter) that have something to say about Clint Eastwood's appearance at the Republican National Convention this is not the venue for comments.  This is my Dad's blog and my Dad happens to think that Clint Eastwood ROCKS!!  He has his new and improved "Cancer Binder" that says:

"You've got to ask yourself one question: 'Do I feel lucky?' 

Well, do ya cancer?"