Fred and Friends

[LSU Girls Rock]

Hi I'm Sylvia and I am a caregiver (or at least I am trying to be). Well does he story start. The big LC  isn't for sissy's that's for sure!!. 

My BF was diagnosed with ....and I pause here because who knows....my faith in God is mighty but in Doctors pretty low. Our story started back in October 2014. He was feeling like crap. no energy, no get up and go, he had flu like symptoms and just overall was not himself. I made him see his Primary Physician (D.A. for short). The doctor said pneumonia, gave him a shot and a scrip, then sent him home.

 

December 2014 no better- no worse. But I ask him just to double check again. (Family history of cancer, smoking, construction, asbestos.early 50's...all the fun stuff)This time they did chest x-rays and blood work. We left and went on a cruise. We received no phone calls, no snail mail, email or Facebook message regarding those test. Like most people, no news has to be good news. Right? (Insert "and they lived happily ever after" please?)

 

Sadly in April 3, 2015, he was very ill with the same symptoms. This time the doctor pulled out the reports from December and said his chest x-ray was abnormal and wanted him to have a scan. (WTH right- 4 months later). So on April 23, 2015 the Scan was done, The results were ready the next day. The doctor says go see my colleague, the Pulmonary Specialist (POS for short). The POS tells us it looks like a mass on his right lung, upper lobe. He wants to do a Bronchoscopy to be sure. He then refers us to another doctor (same day appointment) who is a Thoraic Surgeon (affectionatly referred to as TB) . Now this doctor says to us "Why are you here"? (Let's just say I had to hand it to Jesus at this point because I was ready to go ballastic and not in a good christian girl way). We told him how we ended up at his office and he sent us home and told us he had nothing to talk about until the Bronc was complete.Seven days later the procedure is done and the POS tells us it is Stage III LC, it is in his right lung and needs to be removed ASAP!!  Sent back to TB who now tells us that he feels it is too close to the heart to preform surgery and he wants to take it to the tumor board in three days and then see us. So three days later I called "to schedule surgery etc...i know I am an optimistic person what can I say?) His nurse, not his PA, his nurse tells us there will be no surgery and she continues to ramble as i tune her out and finally interrupt her to insist she get TB on the phone so he can tell my BF what is going on. He gets on the phone and I ask him to hold on while I get the BF. He quickly tells me "no I will talk to you and you can relate. Then I will see you tomorrow after he has had time to process and gather any questions he might have" At this point I forgot everything I learned in Sunday School and went off on him. To my LC Virgin ears I heard "death sentense".  We go see him the following day and he is jolly, optimistic, completely not the same conversation I had the previous day. He is referring us to an Oncologist (his colleague)

May 18, 2015 (200 days since abnormal chest xray)Call the Oncologist, only to get another lesson in the big LC by a receptionist who infromed me in her 15 year old voice, that we needed a Medical Oncologist first, her doctor was the Radiation Oncologist.

Finally Medical, Radiation, Primary, Surgeon and Pulmonary doctor all on board. We asked the same question to all "who is the captain of this ship" No one stepped up to helm.  

 

Thirteen days later, I fired all of them, dragged my BF kicking and screaming 2 hours away to the closest Cancer Institute I could find.

 

5 PET Scans, 4 CT Scans, 8 Chest x-rays, Two Bronchsocopy's, One Mediatinoscopy, One Port Placement, 1 Bone Scan, 1 MRI of the Brain, 459 needle pokes, 4 Bottles of Jose Quervo and alot of time on my knees- we now have a diagnosis.

 

Stage IIIa Lung Cancer T2N2Mo  Right Upper Lobe with all nodes negative.

Carboplatin and Taxol are he drugs of choice and Neupogen if his white blood count drops 

Chemo week one complete- 224 days after abnormal chest xray.

Week two starts tomorrow- 

Lots of questions, lots of worries and concerns, (I left out ALOT from the above otherwise it would take you days to read all the nasty horrible details)

I am in shock, i am sad, I am scared, I am mad as hell, I am worried they don't have it right- 

I think i am gonna need another bottle of Jose- (j/k)

 

Thanks, for reading

Sylvia

[eric byrne]

Good Morning Sylvia,

                                  Welcome to LCSC,phew,you have certainly been through the mill,what a story.Sorry to hear of all your BF problems,I think most of us here have also had their ups and downs.

     Your BFs multi-disciplinary medical team have now got to the stage of collating all the different strands of reports and evidence,they will now put to-gether an individual treatment plan that will provide the best outcomes for your BF.I have to go back nearly seven years to that point in time when I was going through the trauma of appointments,waiting for test results and what will happen next as my treatment plan is put into effect.I am a natural born worrier and certainly despite being a Scot,not a Braveheart,I worried about the chemo,will my hair all fall out?will it make me nauseaous,surgery - will it be excrutiatingly painful and leave me a breathless invalid?,what if all this dos'nt work?.these and I am sure a myriad of other worries filled my overactive brain.

     I cannot promise you that my experience would have been as for everyone,but I really sailed through the lot,my hair did'nt fall out,I did'nt get nauseaous,to say my surgery was painful would be a complete exaggeration,more an ache for a couple of weeks which inperceptively just faded away.Well here I am 7 years later,enjoying life to the full.

        A saying that gave me food for thought at the time was "Worry is like sitting in a rocking chair,it gives you something to do but it dos'nt get you anywhere".I know its difficult,but I found that as time passed and my treatments were completed,my anxieties began to subside.

    Please pass onto your BF my kindest regards,look after yourself too,dont be shy in asking friends and family for support when you need it.Please do keep us informed how things are progressing,we are here you support you,so you should never feel you are alone.

   Best Wishes. 

[Tom Galli]

Sylvia,

 

Your boyfriend's story sounds remarkably like mine.  Also a late stage lung cancer patient with first prognosis of no surgery because of tumor location.  I received pre-surgical chemo and radiation to shrink the tumor and allow removal of my lung.  Moreover, there are advances in alternative surgical treatment like cyber knife and others that are now available and might help.

 

My chemo was taxol-carboplatin also and my most troubling side effect was joint pain.  Read about "taxol toes" and if he develops this let us know.  There are a number of practical measures one can take to mitigate this side effect.

 

Interesting that you would count the needle pokes.  I never thought to do that.

 

Stay the course.  Treatment is a journey not a sprint.

 

Regards,

 

Tom

[LSU Girls Rock]

BTW Fred is the name of the tumor and friends are all the horrible test, doctors and others that I am completely am in dislike of!

 

Yes we have been through the ringer on this one. He and I have been friends for about 6 years, he was my boss for most of those but only together about 1. So it's alot for a new relationship to deal with. That being said I am in it to win it as the lame ole saying goes. 

 

I think for me the hardest parts are: (yep there is a list)

1- two rounds of antibiotics bc they thought it pneumonia, it wasn't

 

2- being told node involvement, hilum, too close to heart, no surgery, 8 weeks chempo and radiation- to node involovement, hilum, whole lung would have to come out, dont want to do that, (see attachment) to nodes are negative, hilum ok, not worried about closeness, 4 weeks chemo/radiation, then resection of upper lobe. I mean who knows what tomorrow will be and who knows we are being told the truth?

 

3-His anger - i know it's really not me, I know in my head but my heart takes a beating when he is angry and I am getting the brunt of it.(no family close by for me, very little for him, none of any help) to fight with someone who you have never fought with, the guilt of fighting is unbearable. 

 

4- The alone time. Be careful what you wish for right. I alway told him he was retired so he had lots of free time while I was at work, so he didnt need alone time, but I did. NOW I am alone so much it makes me nuts. So I spend it looking at more stuff on LC which brings me to Number 5

 

5-my 23 hour long days. I work full time (he is retired) and then I come home to clean house and the mess he's made, cook, only to watch him eat garbage that is so bad for a healthy person much less someone with LC,and then do more research more things aboutabout something I never ever ever weanted to be looking at. While he lays in bed and then shows no interest in anything I have found. He would still be going to THE BUTCHER (TB), the Piece of xxxx(POS) and the Dumbxxx(DA). 

 

6- So much to read- one says one thing, another says something different, this diet, that diet, do this, dont do this, meds should not do this but they do, round and round the merry go round goes!

 

6- Other peoples attitude and comments. (yes he smoked, yes he knew it could cause lung cancer, yes he did it anyway for 30 years, yes i tried to get him to stop.....) Jeeez

 

Feeling like no one else in the world is dealing with this- knowing not true but it feels that way.

I own a magazine (online and in print in 5 major cities) and I started a blog but have yet to put it in print. (Writing makes me feel better). 

 

Well that's just the start of it. 

[LSU Girls Rock]

Hi Tom,

 

Thanks so much for the information about "toes"  I will for sure be reading up on that one.

 

His biggest side effect so far is "gas". I do not mean the normal flatulence everyone gets- I mean over the top, where are the gas mask Lord help me no never mind just blow up the house and it's contents, flatulence. This of course turns into diarehha and he never knows which one it will be. Which leads us on a whole nother journey I never wanted to be on., 

 

I tried beano, pepto, peppermints, garlic soup, the scrips for nausea, lemon water, cinnimon sticks, immodiam, every "grandma home remedy out there" (Obviously granny never dealt with the LC) nothing works. he is miserable and I am in need of fresh air. 

 

Til Later

Sylvia

[Tom Galli]

Sylvia,

 

Had that problem also.  One of the old-timers told me to eat a bowl of plain steamed white rice in the morning, each morning.  Nothing but a little soy sauce for flavor.  Worked for me.

[LSU Girls Rock]

Hi Tom,

 

Well of course he covered the rice in white peppered gravy, so that was a bust.

 

The doctor did give him some new meds that are suppose to fix or at least make life with him liveable again. Only the first day so still waiting for the house to explode!

 

The radiation is taking it's toll now. He is having problems with his throat. Hurts to eat or even drink sometimes. New meds for this also- numbs his throat,

 

FINALLY thank you sweet baby Jesus he told them that he had turned into a big ole meanie pants.(you know the mood swings, mad at the drop of the hat, snapping, screaming at the TV and its not even a ball game, biting my head off for NOT having the LC..etc) They of course offered him.....new meds!

 

He refused them for now. However, I on the other hand told them just to write a double scrip of the strongest ones they had for me instead. (they declined- now they are the big ole meanie pants)

 

Monday will be the 4th week of treatment. They will be rescanning, repoking, re-whatever-it-is-they-do on the July 1st. If Fred has lost weight and has stayed in one place, then they will be doing a lobectomy, followed by 4 more weeks of chemo and radiation. (Fingers, Toes and Eyes crossed)

 

I have talked to him (sneaked it into a conversation) about this site and you Tom in particular. He shows some interest so maybe before too much longer he will ......at least read.

 

I am leaving him for a week and we will see what happens. Maybe if I am not here to witch, scream, holler and stomp my feet- he will get more actively involved in his health. 

 

My thought for this day: If I was given this news- how would I react? Would I do absolutely everything I was told I shouldn't, just to show them that I could? Would I pretend it didn't happen and hope it went away on it's own? Who knows?

 

 I would like to think I would follow the doctors orders to the letter and research and study and learn everything I could about the thing that could possiblly kill me before I was ready to go!

 

I  KNOW this..........I would be just mad enough to fight like hell to survive. 

 

God Bless

Sylvia

[Tom Galli]

Sylvia,

 

It is easier to say have patience than to actually embrace being patient.  Encounters with lung cancer are dangerous and we all become affected by fear.

 

My wife recalled I became lactose intolerant during my first cycle of taxol-carboplatin and conventional radiation.  The literature does not show a high correlation of intolerance to the drug but it happened to me.  I both modified my diet using lactase free milk and avoided cheese or used Lactaid pills before eating must have foods, like pizza.  It will take a degree of experimentation to determine the number of pills to offset intestinal difficulties.  For example, before eating several slices of a pizza with cheese, I take 3 pills.

 

Understand about the pain associated with radiation. It comes in like a lamb but exits like a lion.  I was sucking Halls lemon cough drops almost all the time in addition to my prescribed medication and still the pain persisted.  Right about now, he'll start losing energy and sleeping a great deal as daily radiation persists.

 

Each of us reacts differently to a life threatening diagnosis.  To this day, I don't know how my wive tolerated some of my antics.  I would say that is par for the course.  Hang in there.  I've attached a file that I composed several years ago that might be a good start point to capture Fred's interesting in reading in to the disease.

 

Surgery for me, at least the first one, was a piece of cake.  I never got to the adjunct  chemo after surgery because of surgical complications.  Everything I've read suggests the adjunct treatment is very important to prevent new tumors.

 

I know this is hard on you but it is vastly important that you be there to support his treatment.  Depression for both of you is a normal state.  My wife and I laugh about some of the things I did during treatment.  It is OK for you to take a break but I would strongly encourage you attend each of his consultations with his medical professionals.  I was so afraid of the disease that I wouldn't ask questions but my wife did and some of those questions leaded to a treatment course that saved my life.

 

Stay the course.

 

Regards,

 

Tom