Home today from SCT

Sal0101

Whewww,

I came home today! 

This was definately harder than R-Chop or R-ice. I have absolutely no appetite so I'm forcing myself to eat.  I didn't really have nausea with the other chemos, but definately do this time.  Thank goodness for those anti-nausea meds. My mouth is constantly dry, and my taste buds for the first time have changed for the worse.  I didn't get any mouth sores, but got some lower in my throat, so it was hard to swallow for several days, that is getting much better. The bowels are quite interesting to say the least. I had several platelet and blood transfusions, which I hear are normal. 

 I am very fatigued so I try to nap, however my Napping isn't really falling asleep, its just kinda sitting with my eyes closed without moving. I never was a good napper. I'm forcing myself to walk and even get up, although the bathroom keeps calling so I have no choice but to get up. 

I'm looking at the stairs leading to my bedroom and just might wait until tonight to climb them ( they're normal stairs, not a mountain) because once I'm up I don't want to come back down. 

My husband is great, probably more nervous than me at this point, because there isn't a little button to summon the nurses this time!

Paella, thanks for checking in on me!!!!

and Po, you were right, eat, walk,eat, walk, eat, walk, eat walk, shower, ugggggggg

Sharon

paella

Welcome home!

 

And isn’t it wonderful, great and terrific to be home?  Maybe except for the stairs.  Sounds like you’re doing great, with a darn good attitude.  Everything you described is exactly what SCT recovery entails (speaking first hand).  When is your first follow up doc visit?  Keep smiling!

 

Paella

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

po18guy

Life shrinks down

It is most difficut when your numbers bottom out, as you are then surviving almost solely on transfusions. Everything must be done out of a sense of duty. There are lots of specialists in the hospital pumping their fists and shouting rah! rah! rah! - but what if you have just enough energy to be a zombie? Some days I could barely speak. It took a lot of energy simply to form thoughts and then attempt to express them.

As to eating, I survived on Odwalla protein drinks. Mango was my favorite, even though I do not like mangoes! For a few days, they gave me marinol capsules (synthetic pot, basically) to stim my appetite. Once it was jump started, I was doing a couple of protein drinks and one dinner. Then, I progressd to cream of wheat. Amazingly, I still like it.   

You are truly in the one-day-at-a-time mode. Our life condenses down to a very small picture. Basically, moment by moment. However, even though it is a medical prodecure, and we survived it, we're still fighting for our lives at this point. Breathing might be all the exercise you need at times.  

Factoid: back when they used to transfuse whole blood, some peole got GvHD due to the white cells traying to take over! Early trasfusions were almost a tranplant!

lindary

SCT moving forward

Sharon, It is such good news that you are doing so well. 

I had to laugh at your comment about the stairs. I've had several surgeries and that was my attitude each time. Once I get up there I stay, at least for a few days. 

Healing prayers to both of you. 

Max Former Hodgkins Stage 3

po18guy said:

Life shrinks down

It is most difficut when your numbers bottom out, as you are then surviving almost solely on transfusions. Everything must be done out of a sense of duty. There are lots of specialists in the hospital pumping their fists and shouting rah! rah! rah! - but what if you have just enough energy to be a zombie? Some days I could barely speak. It took a lot of energy simply to form thoughts and then attempt to express them.

As to eating, I survived on Odwalla protein drinks. Mango was my favorite, even though I do not like mangoes! For a few days, they gave me marinol capsules (synthetic pot, basically) to stim my appetite. Once it was jump started, I was doing a couple of protein drinks and one dinner. Then, I progressd to cream of wheat. Amazingly, I still like it.   

You are truly in the one-day-at-a-time mode. Our life condenses down to a very small picture. Basically, moment by moment. However, even though it is a medical prodecure, and we survived it, we're still fighting for our lives at this point. Breathing might be all the exercise you need at times.  

Factoid: back when they used to transfuse whole blood, some peole got GvHD due to the white cells traying to take over! Early trasfusions were almost a tranplant!

same

Sharon,

Bless your recovery and returning strength. It will come slowly; do not try to force it (see note below to Po).

It is wonderful for you also that your husband is there for you in the manner you described.

max

Po,

When I came out of 25 days in ICU in 1987 after being crushed by the Pontiac, my experience was similiar. I did not eat for 24 days (NG tube only), and for 16 days could not breath, on a vent. I went from around 150 to around 100 (I refused to be weighed -- afraid of the results).

My first day in Acute Care, the PTs rushed in -- "the rah rah, no pain, no gain" team.  Their first task, since I had not stood in a month, was to put me on a "Tilt Table," and crank me from a lying down position, to up right, strapped to a table.  They kept a BP cuff on my arm, and I complained of severe vertigo and nausea. At an angle of about 160 I was blacking out, so they lowered me.

They learned pretty fast that there was no "rah rah" in me.... They seemed to view me as a sort of spiritual reject, since I would not play along.  I was sent home to home PT visitations after two weeks in acute care. Home PT, followed by me going to the PT's clinic, ran for about a year or less.

Six months after the wreck, I was able to get out of bed by myself, but barely. After a year, I could walk with a quad cain, no longer needing a walker.

My view: The rah rah squad needs to drink less coffee, and learn what being weak is all about. All of the PTs seemed to have had attitude training in a Soviet prison camp.  I'm glad I escaped.

But, I later learned that part of it was an act: After several days in Acute Care, the lead PT quit coming around, having her subordinates work me.  I did not know why, but figured she was disguisted with me.  My mom told me many months later, out of the blue that that lead PT had pulled her aside in the hall one day, crying !  Said that I was in horrible condition, and that she (my mom) needed to push me hard at home, or "I would retreat into a shell and never walk again."  The PT had feelings, I just didn't know it at the time, and most likely she was right.

My philosophy since: If it hurts, do it anyway.  I guess I did learn something.

max

lindary

Max Former Hodgkins Stage 3 said:

same

Sharon,

Bless your recovery and returning strength. It will come slowly; do not try to force it (see note below to Po).

It is wonderful for you also that your husband is there for you in the manner you described.

max

Po,

When I came out of 25 days in ICU in 1987 after being crushed by the Pontiac, my experience was similiar. I did not eat for 24 days (NG tube only), and for 16 days could not breath, on a vent. I went from around 150 to around 100 (I refused to be weighed -- afraid of the results).

My first day in Acute Care, the PTs rushed in -- "the rah rah, no pain, no gain" team.  Their first task, since I had not stood in a month, was to put me on a "Tilt Table," and crank me from a lying down position, to up right, strapped to a table.  They kept a BP cuff on my arm, and I complained of severe vertigo and nausea. At an angle of about 160 I was blacking out, so they lowered me.

They learned pretty fast that there was no "rah rah" in me.... They seemed to view me as a sort of spiritual reject, since I would not play along.  I was sent home to home PT visitations after two weeks in acute care. Home PT, followed by me going to the PT's clinic, ran for about a year or less.

Six months after the wreck, I was able to get out of bed by myself, but barely. After a year, I could walk with a quad cain, no longer needing a walker.

My view: The rah rah squad needs to drink less coffee, and learn what being weak is all about. All of the PTs seemed to have had attitude training in a Soviet prison camp.  I'm glad I escaped.

But, I later learned that part of it was an act: After several days in Acute Care, the lead PT quit coming around, having her subordinates work me.  I did not know why, but figured she was disguisted with me.  My mom told me many months later, out of the blue that that lead PT had pulled her aside in the hall one day, crying !  Said that I was in horrible condition, and that she (my mom) needed to push me hard at home, or "I would retreat into a shell and never walk again."  The PT had feelings, I just didn't know it at the time, and most likely she was right.

My philosophy since: If it hurts, do it anyway.  I guess I did learn something.

max

If it hurts

My mom had arthritis in her hands. She never let it stop her from doing stuff but just did it a little slower on days the hands hurt a lot. After 2 surgeries (hysterectomy & perforated bowel) I did take it easy if it hurt. That is until the surgeon said I was healed and it was time to move more. 

For some reason when I went through RICE chemo I didn't stay as active as I should have so afterwards when I tried to run more than 1 or 2 errrands I would get tired and even slightly sore. That is when I started doing what you did, do it anyway. It took months but I finally am able to run more than 2 errands without taking a break/nap. My husband kept telling me to take it easy but I could hear my mom saying, keep going. (She died back in 2005.) 

Thank you for your story about the led PT. Sometimes we all need to reminded these people are human but need to keep a "professional" face when working with people.