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First Follow Up

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Folks,

I was in Baltimore most of the day. I had my first follow up with my MO this afternoon. All in all it was very encouraging. I'm doing as well as expected for 6 weeks post Tx. Blood work was decent but several aspects were on the low side as expected. This accounts for the fatigue and gout. As far as the gout goes, I have meds that alleviate the symptoms and I just need to keep an eye on it. It if persists and causes discomfort, I'm to notify her and she'll prescribe an additional med to help control it. She feels it will resolve itself as I heal more. The same goes for my blood work. Counts aren't low enough to warrent a transfusion. It's just a matter of time until my body manufactures enough new blood cells to compensate for the losses. 

My throat is looking much better but my mouth, as expected, is still pretty torn up. That accounts for the pain and burning. She said to expect that to take up to a full year before the sensitivity to hot and cold lessen and go away. There is the chance that one or the other or both may always be an issue. The same goes fpr the sensitivity in my teeth. Now doesn't that get all that! I can taste the sweet stuff but it hurts to eat it. However, that didn't stop me from having a snack size Klondike bar! 

Sidetrack to food for a moment :) Today was Marcia's birthday. So we celebrated at Mo's Seafood in Little Italy down town. Marcia had the jumbo crab cake with coleslaw and fries and I had the seafood stuffed rockfish. A fillet of rockfish (stripped bass) stuffed with shrimp, scallops and crabmeat, broiled with butter, served with roasted potatoes and a mustard cream sauce drizzled over it. It came with a side of veggies (corn on the cob, broccoli, asaragus and carrots). I was able to eat quite a bit of it and it was glorious! 

Ok... back to business... I've been battling my 3rd case of thrush and it's responding to the Nystatin. I have to take it for another 7 days and that should take care of it. The only thing that has me a little down is my shoulder. It's definitely compromised and we won't know how much will come back for at least a year. The bottom line is going to be rehab. I have to take this bull by the horns and consciously make the effort to exercise it. The only way to maximize recovery is to work the poo out of it to strengthen the muscles and push it to the limit. I'll be looking into a gym membership this week. 

A major concern for all of us is recurrance. There's a thread on that subject up now. I asked her about that. I'm concerned because I had my PET done in December of 2012. At that time, it showed the cancer in my lymph nodes and a slight light light up in my right tonsil. I had my tonsils taken out (palatine and lingual) and the cancerous lymph nodes removed (as well as an additional 24) between Dec. 21st and Feb. 7th. I started treatment March 14th, a full three months from the PET scan. I'm banking on the treatment taking care of any of Jack's minions that may have migrated during those three months. She is very confident they got it.

I asked my MO about recurrance. She said (paraphrase from memory):

 

'We'll never tell you you're cured. You'll always be a cancer survivor. The critical period is the first two years. We'll be seeing you every three months for the first two years. You'll be scoped in July and we'll schedule a PET for August. Between two and 5 years we'll see you every 6 months. You'll be scoped and scanned on the same schedule. At 5 years we won't need to see you anymore.'

I visited my rad techs and chemo and rad nurses to say hi. Hugs and smiles all around. So that's the deal... so far so good.

"T"

 

CivilMatt's picture
CivilMatt
Posts: 2982
Joined: May 2012

 

Hi ‘T’,

That sounded like a meal fit for a king, I crown thee “T King of the early eaters”.  You know, I could eat, I chose not too (it felt to blasted weird).  Hey you still have that PEG or are you PEGless, just wondering how you consumed that feast.

Go to rehab, learn the exercises and work that shoulder, it can’t hurt and it most likely will help.

My chemo onc said to me “you are cured”, I told her that it sounded nice, but I’ll believe it some time in the future.  Like you I opted for the full-meal-deal (surgery, rads, Erbitux).

Keep healing,

Matt

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I still have my PEG Matt. My goal is to have it taken out at my RO appointment/scope the end of July. I'm still taking in the majority of nourishment through the PEG. Since my throat has improved, I can take in enough liquid to stay well hydrated but I also add 8-12oz of water to the PEG feeding for good measure.

Eating IS weird now. To think of the formula dripping into me as eating is definitely weird. However, it does enable me to talk while eating and not be rude :)  Now that I'm taking in some solids, the difference pre and post treatment is striking. Something I took for granted has become something that I have to focus on in order to accomplish. While my swallowing is improving, it must be assisted with water with every bite. Mouth pain certainly detracts from the pleasure. It feels more like work than pleasure and that's definitely weird!

But then I've been told I'm kinda weird (must be a musician/artist thing), my life is becoming "abi-normal" and that's even weirder! ~lol~

As far as that shoulder? I'm doing some shopping tomorrow and a weighted wrist band is on the list. I'm enlisting Marcia to be my trainer and get me to do the exercises. Having her in front of me is much more motivating than looking at myself in a mirror ;)

"T" 

donfoo's picture
donfoo
Posts: 1248
Joined: Dec 2012

Yeah give me a PEG so I can say I GLORIOUSLY enjoyed that seafood mixup. sounds great. I too afraid I'd get a bite or two down than see that GLORIOUS meal see its UNGLORIOUS demise on the way to the disposal. wants to make me cry thinking about it.

Sounds like things are moving along as can be expected and no new surprises. Those scans will be coming up pretty soon.

On the topic of rebuilding, my thoughts are evolving but I want to make sure that all the nutrition and hydration first go toward tissue rebuilding from the damage inflicted during the treatments. I do not want to spend a single calorie or gram of protein on strengthening my upper body while my throat is still mending for example. Just when and how that happens, I will be watching you! LOL

Take care. don

 

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Gosh, you made me hungry just reading about the birthday celebration. Now, if I could just figure out a way to turn hamburger into shrimp & lobster.  LOL

I'm so glad to hear that your recovery is going well, albeit a little slowly for you, I bet. You just keep chuggin' along, my friend. Sorry though, that your shoulder is giving you fits, but hopefully the therapy will fix you right up.

Take care,

Luv,

Wolfen

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

Don, your comment seems to be a put-down of trying to live as fully as possible during the recovery phase.  It is a very positive act to go out to dinner in celebration of a loved one's birthday and find happiness in eating even a few bites of delicious food and then take the leftovers home to enjoy later.  It was delightful to read T's post about doing exactly that. I admire his positive attitude and determination to live as fully as possible while he is recovering. Each survivor copes in his/her own way.  Whether or not a PEG is used as an aid to supply the body with the nutrition needed for healing is something that nobody else should be judgemental about.  Your suggestion that overall fitness should not be attempted during the long healing process required by the throat does not make any sense to me.  My son completed tx (35 rads with concurrent 7 weekly cisplatin) in Sept. and was motivated to regain his physical fitness in order to pursue his passion for downhill skiing this past winter.  Because he was determined to ski (he skis expert trails) he got back out on the slopes in December and within a few weeks was able to ski 4 to 6 hours four days a week.  He finished the ski season the end of April with a total of 60 days on the slopes.  He had a PEG placed at the beginning of treatment but did not use it until the last two weeks of treatment and for two weeks after treatment.  He would have lost a lot of weight and been much weaker without the benefit of the PEG.  The PEG also helped him maintain adequate hydration.  In addition to the cans of Jevity, he poured water into the PEG (Smart Water with electrolytes) and also tried to swallow sips of water frequently to maintain his swallowing muscles... but used the PEG to get the required 3000 calories needed for healing.  He used MUGARD during treatment and did not have any mouth sores or thrush although his throat was very sore at the end of treatment and swallowing was painful.  He used the cream his Rad Onc prescribed for the skin on his neck and had only a mild sunburn-type redness which never blistered.  He had a PET scan in Nov. and it was clean ... NED.  He now has 95% of his saliva and taste bud function and eats anything he wants with no swallowing problems and loves to cook gourmet meals for himself and friends.  Now that ski season is over, he is keeping fit by roller-blading, hiking, camping.  He is 51 years old and embraces life.  I guess what I am trying to tell you is that while there are similarities in terms of the general experience with this type of cancer, the details are different for each patient.  Each patient deserves support and respect for what they are facing and how they choose to deal with it.  I will also be watching T... with much admiration ... and cheering him on in his quest to recover and live as fully as possible.

donfoo's picture
donfoo
Posts: 1248
Joined: Dec 2012

So sorry you read my post so wrongly, I was wanted to celebrate T enjoing a meal. People need to lighten up, life is better when not a stressed out and making stuff up or minimally wasting good cycles misintreping a jest in kind.

All that other stuff, don't know. I was just trying to communicate if you are just brining in minimum nutrition then it seems common sense the body uses those first to rebuild all the damage done first, then start rebuilding mass and other stuff. And by not breaking down tissue on purpose and that is what hard exercise does, then why give the body even the opportunity to get into more of a nutrition deficit. But hey, I am no med pro or even a nutritionist so only basing my viewpoint on common sense or maybe that should be layman viewpoint. If your son has no trouble getting sufficient calories for both rebuilding cancer damaged tissue AND building new core strength so much the better. Again my point is if your body is nutritionally challenged, then do not risk getting full recovered first, that is all. Maybe you just got up grumpy today, but i don't even know you and don't appreciate your note taking a comment and fully personalizing it for your use as it certainly does not bring anything positive to me if I may so respectfully offer that opinion.

I have heard of ppl consuming thousand of extra calories each day and the body not gaining much back at all. That tells me the body is using all those extra calories to rebuild core lost tissue and functions.

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

On both our parts, Don.  Yes, you don't know me because I do not post very often ... but I do read through the threads on here every day and have been concerned about recent threads that seemed to be advocating peglessness (new word?Wink) although there seems to be more of a pro-choice attitude evolving.  Sorry if I mis-read your comment to T and failed to recognize it as the light-hearted humor you intended. And no, I did not "get up grumpy today" nor did I have any interest in "personalizing your comment for my use".  I simply misunderstood your sense of humor and apologize for thinking that you were being judgemental about the use of a PEG. All the details I wrote about my son's recovery were simply given to help you understand where I am coming from in witnessing a positive experience for PEG use and regaining physical fitness early on.   One of the problems with emails and written comments is the lack of vocal cues and body language.  I am sure that you had a mental image of me with a frown Frown just as I was not able to see the smile Laughing behind what you typed.   I am among the caregivers who found this forum during a time of desperate need.  The reassurance given by the faithful members who stay here and continue to post messages of hope and caring made it possible for me to stay strong through a frightening health crisis.  I wish only the best for you and everyone else reaching out to each other on this board. 

donfoo's picture
donfoo
Posts: 1248
Joined: Dec 2012

Thanks for your clarifying note. I stirred up the bees nest on this one I am sure you have seen. I invite you to get a copy and add your thoughts as all perspectives are important to bringing the topic of P up while not invoking so much emotion. It is an important and doing all we can to bring the community to place where it can be reviewed and assessed on its merits only strenthens the decisions each of needs to make regarding how they are going to go down this rocky cancer road. it is here

Duggie88's picture
Duggie88
Posts: 542
Joined: Feb 2010

She is right it does take a year or better to get the mouth back to what will be the new normal. I remember my teeth hurting and almost feeling like they were loss while chewing. It's funny how so much change takes so long to come back to the point that one day we just realize its back. It is safe to say that even two plus years down the road you will notice changes.

With your discription of Marcia's birthday celebration sounds like the taste thing is on track. Did you take notice that celebrating her birthday this time had a whole lot more meaning than previously? Even little things like right after I am done posting this I am making a cup of coffee and I am going to go outside with the dog and just stare into the woods and enjoy the quiet. I always had that luxury before treatments but now it has so much more meaning. Just my thought for today.

Enjoy the weekend "T". I am happy your recovery is well on track. Life is good.

      Jeff

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

your tracking is well on the way to an exciting new normal. 

 

congrats on the news and years to come game plan. 

 

john 

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

Birthday wishes to Marcia and congrats on a rather uneventful report. I was room temp for everything, including water, atleast 6 months if not 9 months. I tolerated hot before cold. I could take milk and Ensure straight out of the fridge and it seemed like milk helped the food go down easier than water did. A year post, when I get a shake or eat ice cream, the first bite or two are difficult but then my mouth adjusts and it tastes good. I'll say a little prayer that physical therapy works as well for your shoulder as it did mine, The therapist gave me some elastic bands to work with and insight of a couple of weeks, I made great strides. Initially, I could not raise my arm to wash my own hair. Following therapy, I could cross my arm over my head and touch the opposite ear.  Good luck!

Candi    

phrannie51's picture
phrannie51
Posts: 3744
Joined: Mar 2012

wonderful!  I'd have to give both a try...Smile!  T, it sounds to me like your check up went great....6 weeks out of treatment isn't very long, and it sounds like things are beginning to get on the road to normal.  Confidence from the Dr. is a true reliever of anxiety....I need a dose of it often.

p

PS....had to go back and re-read your meal....read it slowly so I could take in every virtual bite.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

P,

Marcia and I stumbled onto Mo's seafood on the way home from treatment in early April before it started kicking my tush. We looked it up and found it was one of the best seafood places around. I told Marcia that as soon as I'm able to eat again we'd go back. It just so happened everything fell into place with her B day and all. There are leftovers in the fridge we'll be heating up today for lunch. 

On the ride to and from Baltimore yesterday we saw a billboard for Hillshire Farms Polska Kielbasa three times! By the third time, we knew it was a sign from above and it's on the menu for this evening ~lol~ I make a mean kielbasa, peppers and onions over rice ;) 

"T"

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

Great stuff Tim, When you are performing, (I know you are a solo act) do you stand or sit on a stool to play and sing? Rehabing the sjoulder is great, it's a goal and will help distract from all the other crap as you mend. I had my last rad and chemo on June 17th 2009. My taste is totally back, saliva is 80%, am now 180 lbs (went down to 145), I drive a pickup for NAPA 3 days a week, nine hour shifts. Voice has been back since 3 months after rads, of course I don't sing for extended periods, just the odd song with my guitar maybe twice a week, so I don't now how it would hold up in a 2 hour concert. So it won't take long for you to get up to speed. Am going to see Peter Frampton with B.B. King in Lancaster in August. I would love to see your act, maybe I will take the trip to WV to see you play, in a few months let me know where you are playing, you have my e-mail address. Denis

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Denis,

I'll add you to my mailing list. I have some gigs in August and one booked for Sept. There's a privare event (wedding) I'm doing in July with a violinist up in the Shenandoah Park. No singing involved in that one. I'm only looking at three tunes for the bride and groom and 4-5 fillers while folks are being seated before the ceremony.

The others are solo and with my singing partner as a duo called 'Sweet T'. I'm able to play and sing as of now. I need to get my stamina back as well as my callouses as all my gigs are 2 sets (1.5-2 hours). I typically use a stool when I perform. 

"T"

donfoo's picture
donfoo
Posts: 1248
Joined: Dec 2012

Hey T

 

The issue that starts with a P, I am commited to no longer saying the word is really off the charts. I know we know each other well enough that the comment about having a P was purely tongue in cheek. Yet again, I meant NO ill will or some snipe about having a P. Just commeint how lovely and sharing your joy at being able to really enjoy a full meal. I am nowhere there yet and just made a comment in jest that if I had a P, maybe I would be able to enjoy the same meal to the same degree as you. I'm done commenting on that topic for awhile.

Enjoy life and next glorious bite of some crab cake, give me a wink. don

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Foo,

No harm no foul as far as I'm concerned ;) I know what you mean. BTW... made a strawberry shake in the Vitamix... it was amazing! The key is to let it sit for a bit so it's not so bitter cold from the ice cream. 1/4 cup milk, about two cups vanilla ice cream a tsp of vanilla extract and 4 ripe strawberries. That machine is a beast! Thanks again for the lead on getting one. 

"T"

HobbsDoggy
Posts: 165
Joined: Feb 2013

One of the most interesting things I found out from this group and the local survirors group is that we all seem to recover at a different rate and with different things improving or back sliding at different times.  Its fantastic that you enjoyed your meal and are recovering so well. Shoulder issue seems like one that will go away with therapy.  For that sort of things I was lucky, no long term issues with neck or shoulder, still proplems with lack of ability to taste and sometimes a lot of fatigue and other times almost no fatigue.

I don't think Don meant anything other than saying wht was going on with him and boy could I relate. 

Best on continued fast recovery.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Good read T, sounds like you are progressing nicely....and the meal sounds awesome to me... As you know, I love seafood.

I was just reading over your thread and see the obvious confidence in your recovery, your general attitude and calmness..., you seem at peace. I see the real T shining through thesse days.

I'm reflecting your first few months or so on here, your fears, worries, anxiety, etc...

You see now what we were telling you back in those days...

You will survive, you will make it through..., and more than likely your voice will make it through as well...

Very rough treatment, but very doable....

And you did it...., congrats,

~John

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi John,

Thank you and yes, I'm feeling better each day a little at a time. The order has changed from one step forward/two steps back to two steps forward/one step back. Indeed, when I look back, I was a babe in the woods compared to now. Still, reading/hearing the words and actually experiencing the physical aspects of cancer and it's treatment is like the difference between looking at pictures of the Grand Canyon and standing on the edge. 

My team was/is awesome and continue to be as they look after me during recovery.  The folks here have been and continue to be an inspiration to me. 

I agree with you that the treatment is "very rough". It certainly is. I would take it a step further and say it's "brutal". As far as "very doable"? "Doable" is too kind a word.  I feel I had to "survive" it.  I had no choice but to endure whatever treatment threw my way, from bouts of thrush to negative reactions to drugs to nausea and vomiting and gout to you name it, I went through it! Many deal with far worse than I did and some make out much better. "We're all different" applies in how we deal with treatment. Regardless, accepting the alternative is not an option ;) 

The little victories (like eating real food!) have done so much for my attitude. Finally sleeping more than a few hours at a time have done wonders for my energy levels. I still have a long way to go before I can assess what my "abi-normal" life is going to be but so far so good :)

Positive thoughts and prayers always...

"T"

 

 

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

You do what you have to do to survive...... I'm going kicking and screaming...

JG

jim and i's picture
jim and i
Posts: 1635
Joined: May 2011

Sounds like a great report. Also sounds like you are getting your eating ability back as well. Keep it up. Soon you will hear NED

Debbie

Roar's picture
Roar
Posts: 241
Joined: Mar 2013

By the power vested in me I declare everyone on this page cured- good luck with the gym 

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

Man I wish I could eat that!  My eating is not quite so robust because of the lack of saliva.

Your Onc sounded very positive.  You believed her when you started, don't go not beliving her now.  Staying positive is as important making physical strides.

I'm really happy for you and what a trooper Marsha has been.

Best of everything,

Joe

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Good for you T, i am glad you first follow up went well. As far as hour shoder work it as much as uou can, i did not and i still have c ompromised movement in my right shoulder!  Lucky uou on eating like normal, oh God i cant wait to sit down and eat a meal at a favorite resturant with Christopher again!  Anyway, CONGRATULATIONS!  U are one tough S.O.B.

your friend, Rachel

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Rachel,

I am eating again but it's not normal yet by any means. It's chew chew chew chew...sip and swallow, sip and swallow... repeat... ;) What's odd is fatigue due to lack of use. After a while my jaw and throat get tired. Don't get me wrong, I'm thankful to have retained my taste and to be eating solids so soon after treatment but it's far from normal yet. 

Now where's my morning can of Osmolite :) Ohhh Marcia!....

"T"

CherieLW's picture
CherieLW
Posts: 425
Joined: May 2013

Not sure how I missed this one, but sounds like great news! I hope you make a full recovery fast!  As for the meal of shrimp, scallops, and crabmeat...you have me drooling at work! LOL.  Glad you got to enjoy your meal!  Thinking of you and hoping for no reoccurences!  Seems like you have had such a hard time, but now it's time to relax and recover!

TracyLynn72's picture
TracyLynn72
Posts: 717
Joined: May 2013

Congrats on a great first check up!  Your meal sounds WONDERFUL!!!!!!

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