Pet Scan & Dietician

Okay Mountain Girl –

It is now November 4, 2017.  And alas Daylight Savings Time ends today, so at 2:00 A.M. on Sunday morn, we get to set the clock back One hour!  Wouldn’t it be wonderful if we could “set our physical clocks back to a day when we were cancer free”?  But the clock moves forward and only God can make the sun stand still.  Stopping the clock reminds me of this beautifully worded song “If I Could Put Time in a Bottle.”  (Reference below) as well as another one which I would dedicate to my own loving husband.  I’m sure you feel the same way.  In most cases I know about personally, a cancer diagnosis brings out strengths in each other and a new closeness and devotion to each other.  We realize we can’t “put time in a bottle”, but oh how we wish we could.  We would pick out the most precious times of our lives, and just “stay there!”

When I last heard from you your husband was going to have his “J” tube put in yesterday, November 3^rd.  Did that go as planned?  Waiting to hear how things are progressing.  Frankly, I’m wondering why a “J” tube wasn’t inserted when the gastroenterologist found that there was so much blockage that the endoscopy couldn’t be completed and also subsequent scans indicated cancer. 

Your husband has surely lost a lot of weight, and consequently he must be very weak.  It will be a great improvement to have some food in his system.  Chemotherapy “does a number” on one’s system.  We suffer through the regimen because we take the long look and pray that although we “feel like the chemo” is killing us, that in fact it is killing only the tumors.  In my husband’s case, his pre-op chemo/radiation regimen went well with relatively few side effects.  So based on his experience initially, I didn’t really realize how bad it could be.  But then when I was diagnosed with my own cancer in November of 2012, it hit me a lot harder than it did him.  So I’m personally aware of how chemo weakens one’s body.  And even then, there have been others who suffered through that regimen even more than I, and have lived to tell about it.  And I’m nearing my 5-yr. mark in November, so I’m not complaining. 

So I hope your husband begins to feel better very quickly.  The “J” tube will enable him to get some much needed water and nourishment into his system too.  And naturally, we are always hoping that he will be able to weather this storm, and come out victorious. 

And you don’t even have to tell us how you feel as his loving caregiver.  As I’ve said before, when my husband was diagnosed, I felt like I had just been diagnosed with cancer as well.  When you’re inseparable and have all things in common, what hurts one hurts the other.  So kudos to you for the caregiver role you are in.  You’re in much need of prayer as well.  A wife, sister, brother, mother, dad, or whomever has the responsibility of caring for their most-prized possession (in this case your husband) carries a heavy load that can’t be put into words.  I just know by the many stories that I read here that so often it is the wife that has to step up to the plate and take over.  Often the wife has children, so she has to spread herself thin, often trying to hold down a job, raise the children and be the nurse to her husband all at the same time.  It’s a tall order to fill.  Suddenly you’re cast into a role that you were never prepared to fill, at least I wasn’t.  Suddenly you’re both on a “trip” you never wanted to take.  But then, the "race against time is on!"

But when last we heard from you, things seem to be going in the right direction as far as being thoroughly tested is concerned.  So I’m hoping to hear that things are progressing.  We know how hectic one’s world becomes when suddenly cancer enters the picture!

Love & prayers for both you and your husband, as well as other family members,

Loretta

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1.      https://www.youtube.com/watch?v=2uR96vc2Y3I

2.      https://www.youtube.com/watch?v=Dq0llrCYtCQ

“You are the wind beneath my Wings”  

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Mtngirl7533 said:

Pet Scan/J Tube

Hi Loretta! I am so grateful to have you and your thoughtful guidance! I truly have been overwhelmed and at times teary eyed! It felt like a ton of bricks fell on me when I heard of his diagnosis! Believe I rarely have cried in front of him as I am trying to stay strong for him but inside I am crying non stop, feel incredibly saddened and helpless! But I still have put on my big girl pants and have been with him through everything and will continue to be by his side the whole way! Picking up his supplies, education, changing dressings and everything in between! He actually worked the power outages in our State right up until the night before the surgery to place J Tube! Dedicated Lineman! They didn't need the medi port because he has great veins! They also did a Bronscopy and said his windpipe looks great! Results from the Pet Scan were equally encouraging and shows NO spread to other organs, yeah!!! Then the tears in my eyes were of relief! Many appointments to come! Simulation and education for meds, ect. this week! His  surgery for J Tube went well. Pain was prevelent but comtrolled! Today he was feeling better, good sign:) With no power for 5 days and spotty internet conection I was unable to update or get back to anyone! As far as I know, Chemo/Rads will start the 17th! I will check back asap! Thank you for everything! Prayers for all<3

Well hello again ~

Looks like all the tests are turning out to be “tops” as far as I can see.  Have written you a private message, so I won’t repeat everything here.  There is only one thing that “jumped out at me.” “THEY DIDN'T NEED THE MEDI PORT BECAUSE HE HAS GREAT VEINS!”

NORMALLY, EC patients that are going to go through a pre-op chemo/radiation regimen have a medi-port implanted first.  This makes things so much easier.  The “good veins” your hubby has now might not be in such good shape by the end of this treatment regimen.

And then, there will hopefully be the actual surgery itself—even more reason to have the medi-port NOW.

And then, afterwards, the recuperation period that follows while still in the hospital.  May as well not beat around the bush here.--my husband said he felt like he had been run over by a MACK truck!  But in 18 hours or so out from the operation, the nurses had him up and walking.  After the second day, he didn't need any more pain meds.  YEP, it’s not, “Do you feel like taking a walk?”  Your hubby will be greeted by a smiling group of strong nurses who won’t let him fall down, but he will “go for a walk!”  That’s part of the process.  The more he walks, the stronger he will get and the movement is designed to prevent pneumonia from setting in as well.

And then, there are a multitude of monitors with tubes and wires attached to his body.  And you can believe he doesn’t want a needle stick.  His pain medications can be given via a medi-port.

He will also have a morphine pump that he can regulate according to his pain level.  He won’t be able to “overdose”, but he will surely welcome the painkiller.  I’m “looking back” and remember it all as though it were yesterday.  You’re “looking forward” but as with all newbies, you’ve not been there before, so please take my word for it.  Please INSIST that your husband have a medi-port.  It’s not too late.  My husband had his port put in on a Friday, and his chemo treatments began the following Monday.  I feel strongly about this because I know what an advantage it is.  It’s the best thing for the patient.

My calendar is marked on November 17^th with you and your husband’s name.  Keep us informed.  We’re always ready to help if we can. 

Love & prayers,

Loretta

Hello again:

Thanks for the update.  You're learning by the "hour".  Now the clock is ticking.  Tomorrow, Friday, will be November 10th.  That means there is only one week to have the medi-port placed and ready to be used.  If I were you, I would be placing a call in the morning directly to the doctor, and saying that you and your husband have discussed the matter, and researched the advantages of a medi-port and spoken to other cancer patients who know the advantages of a medi-port over repeated "needle sticks."    

Therefore, you want a medi-port placed prior to the start of chemotherapy.  And you would like for him to place an order so that the port can be in place and ready to use prior to the first chemo regimen on November 17th.  

He may be one of these doctors who only likes "giving orders" but unaccustomed to "getting orders!" if you know what I mean.  It's not a matter you need to discuss.  It's a matter of "getting it done."  The doctor should not hesitate. 

Usually the port is put in place by a radiologist, and that department has a "timetable" of their own.  So there's really not a lot of time between now and Friday week.  

Don't settle for, "I'll pass this along to the doctor and he will get back in touch with you!"  And by all means I would NOT leave a message.  I've often had to call more than once to try to reach a "human" because the message I left was never returned.  That hasn't been the case with my oncologist, but it certainly has been the case for the "scheduling department!"  I would settle for nothing less than speaking with HIS nurse. 

Moreover, I would want the number of a person that will be on duty for your doctor if he isn't, this weekend, just in case something unforeseen should happen while you're away!  

Now if I could, I would "order only sunshine and warmth" for you for this weekend, but I know more about cancer than I do about how to predict the weather.  But I also know that wherever the two of you are "together" that will be all that matters.  

It's been a busy day here today as well.  I know "frazzled" because tight schedules can do that to you.  But you'll rest better in the mountains this weekend, if you know that this procedure is on schedule to be done prior to the first treatment.  No patient should have to BEG their doctor to "do the right thing that will be the most comfortable for the patient!"   

Obviously, I'm not used to "short notes" but it's been a long day so I'll finish my thoughts in a separate posting hopefully tomorrow. But you don't need to spend all your time writing back & forth here when you could be on your way to the mountains.  Fall is always beautiful especially in the mountains!  

Love Loretta