And now the tears

LiseA

I've had my moments of fear about what each week would bring, but as I near my 8 treatments crammed into 6 days, I am in tears because it's all so overwhelming and getting beyond my emotions now.

The burning doesn't help, the incredibly heavy and painful tongue, the lack of appetite and feeling like  I have to get a certain amount of protein and carbs in daily, is breaking me down. 

 

Grandmax4

Dry your tears

or, let them flow..you've been to hell and back..and the light is shining at the end of the tunnel. The worse is behind you, it will only get easier 

 

stevenpepe

Hi Lisa, 

Hi Lisa, 

I threw up again last night. Then got up this morning around 10 and had yet another Boost shake with peanut butter and protein powder. I suddenly felt fatigued around 2 and just got up again. My mouth is burning and the Oxycodone is calling my name again. And, it's almost time for another yummy shake.

That's life for me right now, just like I expected. I know what you're going through and I pray you have support.

Here it is July 4th, a beautiful, sunny day here in New York, and everyone is out enjoying the day, bbqing, eating burgers and hot dogs, while I'm struggling to suck down an awful shake, just to get calories and protein. How unfair is this?

But, you know what? We are amongst the lucky ones. The world is filled with plight each and every day and keeping that in mind is what helps keep me going.

You are not alone in your pain out here. If I vomit again tonight, you will be the first person I reach out to. Hang in there.

CivilMatt

tears

LiseA,

You have all day to get the needed calories, take your time.

You should have a variety of pain meds available to you, if not already in your possession.  I don’t know what you have, but there are remedies.  The weekends can be a weak spot if you are not ready.  Luckily, I had real good luck with my magic mouth wash for throat, tongue and mouth discomfort.

Try not to get too overwhelmed, this is a short (seems long) term condition.

Matt

cardoza33

Hang in there

I am only 5 months out of treatment.  I can remember very vividly having good and bad...and very bad days.  Try to ease your pain first with whatever medications techniqus available and make yourself as physically confortable as you can.  Then try to get something to divert your attention.  A movie, nap, puzzle, etc.  Don't let your mind take you to bad places.  You will be okay.  You can handle the treatments, you have up to this point and done so with a very positive attitude.  You are going to handle it.  Try to relax and rest, that is what your days off are about.  I am feeling good and just spent the weekend visiting lots of family and friends I have not seen since before my diagnosis and treatment, it was a gift.  You wll make it through and look back on this whole ordeal with pride in your personal strenght.  Good luck.

Hondo

Last week

 

Hi Lise Try not to worry about the crying; if it helps you any during my last week of treatment I cried like a baby everyday and it was because of my wonderful caretaker, wife, and best friend that I made it in one part. She is truly a gift sent to me from my Father in heaven, when I was too weak to keep going she was my rock. Will be keeping you in prayer all this week.

 

Tim

 

wmc

You have done good Lisa..........

This treatment is one of the hardest to go through. It is like going to hell and back in this fight. You are very close to the end of the tunnel, so just one day at a time and only today matters right now. Once you are done you will get the tomorrows you are fighting for. Don't forget, you are fighting for your life, and you are so much stronger than you think you are. Please know you are in my thoughts and prayers.

Bill

RottiesMom

Lise

Since I am at thd beginning of my treatment, I really don't have any advice.  I am cheering you on!  Prayers said you stay strong...you are almost there!!

Joanne

Josephwc

Time does bring relief

I don't know about you but I can remember reading this forum for the first time several weeks ago and it has really helped. It's encouraging to know that we are not alone and all that we feel is part of the process. I cry from the to time and I welcome hugs. It does get better but it's slow. 

 

Keep your chin up.

Fritz

Hang in there Lise!

Lise, I feel your pain.

As Steven said above, I feel like it is the same routine everyday now. Get up, garlgle with Miracle to get a High Caloric Boost and Protein shake down, get zapped by 8:00 am, take pain meds by 9:00, gargle Miracle again so I can suck down calories again, drink some water, then some more water, then some more ....... and you get the picture. We both are nearing the end; however, as all before us know, this is the worst part of all. The things we need to do to get us past the finish line are the things that hurt the most.

I am rooting for you!!!!

Freddie

RottiesMom

Question Fritz

I asked this is a separate post, but we're you on gabapetin?   My doctor wants me to start taking it this Saturday.  Heard good and bad...any advice?

Cheering for you and Lise!!

Joanne

Fritz

No to gabapetin

Hey, Joanne.

I am not familiar with gabapetin. Is this to replace your Cisplatin doses? If I find anything out about it, I will reply to your other post.

Freddie

RottiesMom

Pain control

No...gabapetin is neurontin...it is supposed to help with pain.  Only thing is you have to take it everyday  (I will be on 3 pills 3 times a day) and yoh have to be weaned off.  It is supposed to put off the need for liquid oxy til later in treatment. 

SusanUES

Ack, poor boo...

No one HAS to be strong all the time; no one CAN be strong all the time.  Each of us has gone...or is currently going through...a trip to hell.  Fortunately, this trip has a return ticket stamped with your name.  Just shed your tears, punch a pillow, do what you must but the end is in sight.  You have been a complete and total trooper through this process and we will have a virtual glass of champagne to toast THE END of your treatment very soon!!!  Big hugs to you, Lisa. 

LiseA

Awww...I couldn't have asked

Awww...I couldn't have asked for, or gotten better support, from you guys. No one could understand this journey better than someone who walked the walk.  I want to be that support for those who are now embarking on their journey and those to come. 

I felt much better once I cried out all the tears I had to shed. Read some of the earlier responses and knew what I had to do. I got up, put some music on, got my paints out, and started to work on a painting i had been meaning to with on since we got to MDA.  Fatigue got to me all evening but I had no more tears.  It was a relief to let it all out. 

Today I finished my 5th treatment of week 5. Tomorrow is the big 6, with five days and 7 treatments worked into two days. The doctor saw me today because there were not many patients, so he examined the burns, the sores, heard the difficulty in speaking and smiled...said it's all normal, and he's surprised it took me so long to be where I am with those things.  They recommended Benedryl cream for itching.  Anyone tried it? Also Mepilex transfer and fentanyl patch.  Doc was surprised I didn't have all of this, but week 4 was probably my best week so I didn't have much to complain about.  Anyway, I felt better once I knew they would take care of whatever comes my way.  Not sure how I feel about the meiplex. It feels a bit odd on the burn. They didn't say if I should moisturize and then put it on. Thanks again.  You all are truly a blessing. I'm very touched. 

wmc

RottiesMom said:

Pain control

No...gabapetin is neurontin...it is supposed to help with pain.  Only thing is you have to take it everyday  (I will be on 3 pills 3 times a day) and yoh have to be weaned off.  It is supposed to put off the need for liquid oxy til later in treatment. 

Just a thought.

First, let me say I have never taken it. Now just from what I have read about it, I would trust your doctor and give it a try. Now the reason is, it is not a narcotic and he was going to go this route so you won't need Oxy which is a narcotic. You don't really have to take meds on a regular basis so I can understand the Why you are hesitant about it. It is for nerve damage and the pain from that. I have had nerve damage and the pain was over the top from a few pinched nerves and nothing could make it go away. Yes, you do have to be slowly taken off or he cuts back on the dose which is just a precaution so you don't get any side effects. It is used for many nerve related things including shingles so they have to have that warning. I would recommend talking with your doctor and explain your concerns. Remember, you do have the final say in everything. Even if you do get really bad pain, and some do and others don't really. It is only for a short time to just get you through the treatment. Just my thoughts and something to consider.

Bill

RottiesMom

wmc said:

Just a thought.

First, let me say I have never taken it. Now just from what I have read about it, I would trust your doctor and give it a try. Now the reason is, it is not a narcotic and he was going to go this route so you won't need Oxy which is a narcotic. You don't really have to take meds on a regular basis so I can understand the Why you are hesitant about it. It is for nerve damage and the pain from that. I have had nerve damage and the pain was over the top from a few pinched nerves and nothing could make it go away. Yes, you do have to be slowly taken off or he cuts back on the dose which is just a precaution so you don't get any side effects. It is used for many nerve related things including shingles so they have to have that warning. I would recommend talking with your doctor and explain your concerns. Remember, you do have the final say in everything. Even if you do get really bad pain, and some do and others don't really. It is only for a short time to just get you through the treatment. Just my thoughts and something to consider.

Bill

Thanks Bill!

Thank you!  I really appreciate your taking the time to give me your advice, that's what I've been thinking...it is short term, I'm being monitored closely, and if if helps with the pain it is a good thing.  I do know different meds work on different pain receptors...so this might cut back on the need for the liquid oxy.  If not, he said at any time it is available.

Joanne

MrsBD

Mipilex

It sounds like you are being cared for very well. I had only one double dose day, but it did make the burns worse. That's when the nurse handed out the Mipilex sheets. What I liked about the Mipilex was that it covered the burns and kept all the crud off my clothes and pillow. It peeled off easily too. They did recommend Silvadene before putting on the sheet, but you said MDA doesn't want you to use it yet, so follow their guidelines. I used oxycodone liquid and Fentanyl patches for about two months and had no trouble stopping.  btw- Your art therapy plan sounds great!