Literally - Word for the Day -- Friday, October 30, 2015

Literally

Definition:  Adverb -- actually; without exaggeration or inaccuracy:   in effect; in substance; very nearly; virtually.


We are On Track!  WBC -  .034 (need to get up above 2.00); RBC - 2.42; hemoglobin - 8.6; platelets - 22 (up from 13 yesterday); Crap - 93.5 (up from yesterday 93).  We are On Track - Literally!


Had the CT on lungs Wednesday and it shows he has a slight infection in lower lobe and upper lobe of left lung and upper lobe of right lung.  He's been getting the cefepime each day in clinic and I am still administering in the evening by infuser.  With his WBC counts coming up along with his other stats, it pulls down his magnesium, potassium and phosphorus.  We told them we had the pills for this, but they need to get it in his system quicker, so he has it through port in clinic, also. 


Along with the WBC and other stats pulling his 'vitamins' down, his intestinal lining is taking away those things, too, because of the chemo and transplant.  This all seems to make sense if you really just think about it.


I spoke with Poppy's aunt in Illinois yesterday.  I think we were on the phone for about 45 minutes. I'm not a phone person...  LOL  I was running an errand to get him some of those damn cigars.  I finally parked in the Wal-Mart parking lot so I could focus on our conversation.  She makes me laugh about a lot of this stuff when I explain it to her.  Before we said our goodbyes I told her I knew God had something else up his sleeve to keep me in line.....  When I got home we sat in the den and was catching up on the day's activities...  I heard a loud BOOM!!!  As soon as I heard it I knew it was a tree we had expected to fall the past year.  It's as big around as Poppy...and it's about 50 ft long.  The kids were on the deck and they ran to it immediately.  Soooooo, God changed my focus on the lung infection and turned it to -- "Thank you, the kids weren't hurt!"


Some good news about the "We are On Track" is, we may not have to cancel our plans for a weekend trip next week.  His APN says his counts should be back up by Wednesday.  I ran into Dr. Z on my way to get our weekly Starbucks downstairs and as we spoke, he too indicated his counts should be back up Tuesday or Wednesday.  So, we may be able to cancel our 8:30 a.m. visits to clinic for next Friday, Saturday and Sunday.  We so needed to hear that today.  Although.....something may happen to change things, it gives us something to look forward.


I have to tell you.... Poppy makes me SICK -- Literally.  I found myself feeling a scratchy throat and some sniffles this week.  I have stayed further away from him because of this.  I can't tell you the last time he kissed me good night or good morning... Months!!!  I slept in the spare room last night.  I began wearing a mask last night when I changed out his infuser or anytime I have to do anything around him.  I have also been lathering my face and neck up with Vicks every night this week.


I spoke with his APN today about it.  I have been afraid all week if I shared this with the clinic they would ban me from him - Literally.  Since I knew all the nurses, APNs and some doctors were dressing for Halloween today, I wore a sweater cap and a procedure mask.  Told them I was posing as a cancer patient...  We all got a laugh out of it...  When I shared my concerns with his APN, I also told her Poppy had some cephalexin (antibiotics) I planned to start taking. 


She quizzed me about fever -- none...  She quizzed me about some other things.  Then she said the cephalexin probably won't do the treat because she believes I have a viral infection.  I have to wear a mask if I'm within 3 ft. of him.  Keep my hands washed constantly.  Things I have been doing anyway.  Everyone there knows how cautious I am.. I'm just so thankful I can continue to care for him.  I went to bed at 2:30 this afternoon and fell right to sleep for about an hour.  Y'all know I'm not a napper and can't sleep when the sun is up... That surprised me.  Literally!  LOL


He is wanting to drive himself to clinic tomorrow.  He really wanted to today, but I told him I needed to go into work.  Trying to finish up budget reports.  I did do some of the work, but did it on my laptop at the clinic instead.  So, I have a feeling he will want to take himself tomorrow, if I'm dragging...  I may tell him I have some other things to do at work, to deter him.  AND, mark your calendar.... He will be back to work on Monday.. Just sayin.... I know him like a book...


I put my back pack blower on yesterday after the tree fell and did the whole back yard.  It was covered with leaves.  He is already talking about burning piles next week, but I warned him that his lungs will be tender for a few months.  He will be wearing a mask the next few months if he is in the yard doing stuff like that.


I bathed the kids last night before bedtime.  I know they are ready to get back into routine.  They have been confined to the sunroom for the most part of this week.  When I went upstairs for a nap today, Sugar slept on my chest the whole time.  She has become so protective of me.  Doesn't even want Pete around me.  She is such a loving animal.  Don't need a blanket when she's on me.  Limp as a rag.


There is a neon light at the end of the tunnel...  I believe we are at the top of the mountain.  I'm thinking by Sunday we will see a major change in labs and in the crap.  We are On Track....


Day #8 plus...


Good Night and Love -- Pepper

Post Stem Cell Transplant Side Effects - Words for the Day - Wednesday, October 28, 2015

Post Stem Cell (Menopause) Side Effects --

Yesssss... You read right.  Although, I won't go into the gory details of the Real Post Side Effects, I will tell you about the personal and professional side. 


I would NOT want to be a RN, nurses' assistant, lab tech, gopher or anything else related to these in the Infusion center.  Oh My!  You should "hear no evil, see no evil, and speak no evil".  It's all evil some days.  Some days you just have to sit back and grin, because you've been there.  Patient, caregivers or all of the above previously listed.


Ex:  Older couple about 70s.  He's the patient... They are talking about Christmas music back home and about rehersal dates.  Then, all of a sudden they were arguing about new steps in the house.  He built them and he knew there was nothing wrong with them.  She wanted new ones.  She couldn't justify why, except she wanted new ones.  He began to almost shout (really loud talking) and told her he wasn't talking to her anymore about the subject.  If she couldn't agree with him, he had nothing else to say...  (Silence is golden)


Our eyes met and starting rolling...  Under that mask I could see a smirk on Poppy's face.  I just kinda dropped my eyes.  I kinda think the both of us was thinking about K.T. Olson's song, "Hold Me"... It's about a man coming home from work and telling his wife to sit down.  Tells her when he left for work that morning he just almost kept driving.  Had to get away from it all.  Even her.  Then she shares her story.  It was the same.  Then they look at each other and kiss.... She tells him to "don't kiss me like we're married.... kiss me like we're lovers!"...  Y'all really need to listen to it.


I knew then our peak was over.  We went in all gloomy...  Fog on the way end... That kinda set the stage for our morning.  Our family in the clinic -- patients and nurses and all of the above.... know the signs... They just roll with the flow...  They hug on you and whisper... "If you need to talk ---". 


Soooooo, that's the most part of "Post Stem Cell Transplant Side Effects".  It ain't a pretty picture.  We knew it was coming.  We just forgot how bad it can get.  We are going on the upside.  WBC is coming up.  Platelets needed today.  Blood needed today.  More Cepfepime infuser tonight.  Crap crept up 10 points.  We see a light at the end of the tunnel. 


In our pit fall this morning, one of our nurses looked at Poppy and said, "The sun is gonna shine when you leave today."  When she asked him how he felt, he said a "Rag"!  "A dirty rag", a "limp rag"... Just a "Rag".... I looked at her and said, "Actually he's trying to tell you he has been on the Rag all week"!!!!  We all stopped!!! Looked at Poppy and then all fell out laughing!!! 


Then there was Steve (our singing nurse).  He sees the salt water rolling down my cheeks and says, "That's okay... I got him on Friday... I'll work him over for ya!" 


It's been a good week.  I took off today... We both got a lot of work done...


When we walked out of Infusion -- the same nurse, Nichole, said as she looked at the window -- "see, I told ya.. the sun is shining!"  And, it was...


We ARE on Track!!


Good Night and Love - Pepper

Cefepime - Word for the Day -- Tuesday, October 27, 2015

Cefepime

Cefepime is a broad-spectrum cephalosporin antibiotic and has been used to treat bacteria responsible for causing pneumonia and infections of the skin and urinary tract.


Day +5 -- We are on a downward spiral, which means we are on track and soon to be upward.  Doesn't that sound "backward" because right now it doesn't see forward to us?


It's been another topsy-turvy couple of days, but the APN tells us we are on track.  I'm assuming some of the signs of 'on track' are feeling gloomy, spitting at each other, not talking, feeling sorry for ourselves.. But, I digress... ONWARD!


WBC was at .10 yesterday and today .03.  So tomorrow he may be 0.0... BUT, remember we are on track!  Platelets were 19 yesterday and today are 24.  Don't get excited about the creeping up because he had a bag of platelets yesterday.  That brings platelets up.  Crap was 54.2 on Sunday, 68.9 on Monday and sitting at 83 today.  Oh Crap!!!  Here comes the Cefepime!  But, don't forget -- we are on track!


He got Invanz again today and then cefepime afterward.  They wanted him to come back to clinic tonight for another infuser of cefepime, BUT, Pepper to the rescue!  I told them we already had an infuser from Sunday as we were awaiting a fever spike.  So, I hooked him up at 7:15 tonight and he should be done in about 30 min.


When APN checked his breathing today she noticed his left lung was not getting the same amount of air as the right.  So tomorrow they are doing a CT scan to see if that may be where his infection lies.  They also did a stick up his nose today to make certain there's nothing going on there.  AND, even though he got blood cultures pulled out of his veins yesterday, they did another on his port tubes today.  They wanna make certain he doesn't have some kind of infection in his port area.


I have to be honest, this infection crap worries me.  I know I shouldn't worry, but that's why he was in the hospital in July.  And, the checking the port area for infection scares me, too.  I keep remembering the staph infection someone we knew had in their port and he passed away.  These things have been eating me up.


We had the massive diahrera deal on Sunday and Monday.  I've been spot cleaning carpet.  I was irritated about it.  Not that these accidents are happening, but that if he drank more liquids it would assist on pushing the antibiotics out of his system and the diarrhea would not be as excessive.  Had to make a run to WM yesterday and get bed pads for the carpet, Immodium for the runs and more trash bags. 


I don't believe he had 20 oz of liquid on Sunday. He is suppose to have two liters a day.  I took him in yesterday and dropped him off.  When I picked him up I dropped a bug in the nurse's ear about that.  Sooooo, fluids today.  I'm thinking -- "Is it cheaper to drink liquids at home or pay for a bag at the clinic?"  That's why I'm irritated. Oh well.... I'm sure he's irritated with me, too.  ONWARD!


He had a bit of oatmeal this morning and I made him a bologna sandwich with onions (his fav) when we finally got home today.  He didn't eat it.  He did have one small container of pudding.  He says everything stinks.  Part of the process.  Hoping he will feel like eating in a couple of days.  I have a meatloaf planned.


I know that he feels bad because he isn't even smoking those little cigars.  Hasn't even been to the garage to see if he has any. 


Not too much more to share.  I feel like I am boing you with all my complaining.  After all, it's not about me... LOL  His APN says she knows we are in the 'feeling down' mode, and it's common, but "We are on Track".  I have cried the last couple of days.  I slept on the couch in the living room last night with the kids because I didn't want them around him and so I could cry in private.  I haven't cried in front of him, but today in clinic he did see a few tears roll down my cheeks.  He didn't ask, because when the APN asked how he felt, I believe I saw his eyes get misty, too.  We have 3-4 more days of neutropenia. 


Good Night and Love -- Pepper 

Crap - Word for the Day - Sunday, October 25, 2015

C-Reactive Protein (CRP)

Guide

A C-reactive protein (CRP) test is a blood test that measures the amount of a protein called C-reactive protein in your blood. C-reactive protein measures general levels of inflammation in your body.

High levels of CRP are caused by infections and many long-term diseases. But a CRP test cannot show where the inflammation is located or what is causing it. Other tests are needed to find the cause and location of the inflammation.

We have always fondly called CRP -- crap, because to us it is a sign of inflammation or infection.  Most often Poppy is a <5, which is not inflammation or infection at all. 

Today was much as the same as yesterday.  His WBC is at .10 (yesterday was .70) , platelets are 27 (yesterday was 20)  and CRP is 54.2 (yesterday was 47).  So, he is more neutropenic and his crap has increased.  Clinic is still amazed his hasn't had fever, nausea or diarrhea.  He only had Invanz today which is an antibiotic.  Tomorrow he is set for a bag of blood.  I'm guessing a bag of fluids, too.

He isn't drinking the two liters of fluids he is directed to take.  Today I don't think he has even had a quart.  He got a little agitated when I asked him at 4:00 p.m. how much he had.  When he told me he had been drinking all day I pointed to his cup on the bar that I filled at 7:00 a.m.  It went with us to clinic and he didn't drink any there.  When we got home he sat it on the bar at 11:30 a.m. and thus still there at 4:00 p.m.  I did not offer to get him any more or something else.  Just gave him "my look" and strongly suggested he get up and get him something.  He obeyed well.  He emptied it and filled it again and it has been sitting on his table since.  It is now 6:00 p.m.  Has had none of it.

His BP is staying at a good range.  Something else clinic is surprised about as he is normally very low.  He hasn't had any BP meds since Wednesday to raise it.  He did run a low grade fever last evening and this morning before we left (99.9), but hasn't since. 

After our little thermometer tiff the other night with him not wanting to wait three minutes for it to register....I bought two more new thermometers.  The other new one I had from a few weeks ago reads your temp in TWO seconds.  I'm just not use to someone registering that quit.  I don't trust a lot of new technology.  That's why I was using the three minute one along with it.

Well, the two new thermometers I got Friday are somewhat similar to what I originally had.  The neatest one is placed against the temple and registers in less than a minute.  It beeps when it reaches temp.  He surprisingly suggested I use the three minute one to compare.  I thought I would faint when he said that...  I really trust the one on the temple.  I can check it while his is sleeping, too.  Don't have to keep telling him to put it under his tongue.  KIDS!!  LOL  Now I have four thermometers.  The three minute one is what I had when Tommy was little.

I was up at 1:30 this morning calming the kids down.  There was something in my swinging bird feeder again.  I let them out and they wouldn't come back.  Ended up, I had to take boards out from the bottom deck and persuade Pete to come out.  He acted like he didn't know how.  It was raining and I was in my T-shirt, with a flashlight, pulling boards out and then putting them back in.  Sugar was out there to help by barking at Pete and waiting to jump him when he came out.  Poppy was on the deck yelling at her and I finally told him it wouldn't help.  I thought he was still in bed.  I bet it would have been a comedy to anyone watching.  I have since raised the feeder and will probably empty it tonight.  I believe it may be a raccoon.

It would have been nice to have a fire in the fireplace today, but we don't have any wood.  What's on the ground is now wet.  I haven't taken time to clean the fireplace either since the last time we used. it.  I'm thinking we will call someone to deliver it and drop it in the driveway.  We've never done that.  We have always gone and got a trailer load and have thrown it over the privacy fence to the back yard.  I can't see that happening any time soon.  But, we always plan on that because that's just what we always do.  Would you call that 'tradition'?  LOL

I've been visiting with an older woman and her husband in clinic.  They are from Marietta, GA.  She looks to be about 70-75.  She just finished up her second transplant in the last few months.  She doesn't seem to be feeling well and seems a little down.  But, she always smiles and is pleasant when we talk.  She was diagnosed in March this year.  She was surprised Poppy is an eight year survivor.

We were talking Friday while Poppy was in the back POD.  She was in a private room.  As we spoke she kept using the words - fight, battle, struggle when she was talking about the myeloma.  I shared with her a few stories about Poppy continuing to work, his appetite, how he helped me around the house even when he felt bad.  She and her husband said they just couldn't imagine that with the 'battle'...  I told them we kept doing everything we did before.  We haven't changed our lifestyle, we have just adjusted because we consider it a "journey".  Her husband responded, "Hmmmmmmm, journey".

This isn't the path we chose for our lives.  We still do not ask God why because we know there is a reason.  When people travel on a trip (journey) they don't know what will happen.   Their car could break down, they could have an accident, can't find a motel, or many others things.  We started our journey to retire and live our life just rocking on the porch together and we had an incident along the way.  So we enjoy our 'journey' the best we can.  We use it to make memories and to share.  Aren't we all on a 'journey'?

Good Night and Love -- Pepper

Neutropenic - Word for the Day -- Saturday, October 24, 2015

Neutropenia 

Definition

Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow that ingest bacteria. Neutropenia is sometimes called agranulocytosis or granulocytopenia because neutrophils make up about 60% of WBCs and have granules inside their cell walls. Neutropenia is a serious disorder because it makes the body vulnerable to bacterial and fungal infections.

Soooooo, here we go.  Poppy got up this morning and felt very well.  I slept in the spare room again after he was up at 3:00 a.m.  The kids were going mad in the sunroom.  He said the bird feeder was swinging so something must have been after the fritos and cubed up hot dogs buns I put in it.  The only thing I could imagine it could have been would be a raccoon as squirrels don't do that at night.  Sooooo, when all the excitement was over and Poppy finally got settled, I vacated our bedroom for some quiet time.

When we arrived at clinic and got the labs back, his nurse started making a lot of calls and we kept hearing his name.  When she came back with the news, we were just as surprised as she.  He is quite neutropenic.  His WBC is at .70 and his platelets at 20 and his hemoglobin at 7.9 and CRP (infection) doubled since yesterday to 47.  In case you have forgotten, all these counts are NOT good.  He is suppose to drop, but we weren't expecting it until Wednesday or Thursday.  He got an infusion of Invanz (antibiotic), a bag of blood, and a bag of platelets.  He is in the mask stage.  He hates masks...  Too bad, Katie...

We came home with an infuser of Cefepime (antibiotics) because the  clinic is for certain his fever is going to spike.  If it gets to 101 I have to call the myeloma night doctor and they will advise me to connect the infuser to his IV hanging out of his chest.  This doesn't freak me out, but I'm just always afraid I will do something like get air in the line, push too fast when cleaning it or cause a bigger infection. 

The rule is S.A.S.H -- Saline, Antibiotics, Saline, Heparin...  Kinda like riding a motorcycle around curves.  Look, Slow, Push, Roll...  If you're a biker you will understand.  Just keep repeating it.  And, don't forget the alcohol pads to clean the tips real good before connecting the infuser, then the saline, then the heparin...  I DON'T want to do this!!!!  But, I learned it eight years ago and I gotta put my big girl panties on.

Been checking fever every hour and the highest has been 99.8...  When he came upstairs to bed it was 99.2.  I'm sure it will go up in the middle of the night.  Isn't that how it always happens?  Even when our kids were little...

We didn't get home from clinic today until 1:00. I made myself busy with fixing a pot of beef stew and picking up huge rain soaked limbs that have fallen from being so dry. Each one has been about 15 ft  long and as big around as a 4x4. They sound like a war zone when they hit the ground. God is keeping me occupied because He knows how I want to control Poppy's health. He is showing me who's boss. He laughs at me a lot about my control.

Please pray Poppy continues his good attitude and the way he feels. The transplant sometimes causes depression. He is very concerned about his job right now. He had one of his managers give notice yesterday while he was in the office. Poppy had planned to work much of the week; that's out now.  Go figure.  We thought he would be able to work a few days before he dropped.

I changed sheets tonight and I am going to bathe the kids tomorrow, BUT I don't plan to even let them out of the sunroom until his counts come back up.  We confined all our pets on his first transplant and I'm not going to take any chances.  He doesn't like it, BUT....

After our argument about the thermometer the other night and I read him all the precautions from the melphalan, I have been reading him bits and pieces of the Word for the Day definitions.  As I read tonight about the fungal infections and bacterial infections he informed me he didn't really want to hear all that depressing stuff.  I guess you can only imagine my response. 

I let him know he needed to know he had to wear a mask for precautions.  I also read him the following: The most common types of infection seen in neutropenic patients (patients with low white blood cell counts) are caused by bacteria normally found on the skin (such as Staphylococcus aureus) or from the gastrointestinal and urinary tract. Fungal infections are also more frequent in patients with neutropenia. The infections may be limited to certain areas of the body (commonly the oral cavity, genital area, and skin) or may spread via the bloodstream to the lungs and other organs in severe, prolonged neutropenia. 

I read this to a man that has an appointment with the dentist the second week of November to get a cavity filled.  The last of September he had his teeth cleaned and had a new crown put in.  All this after I alerted him of the consequences.  So, I'm putting that worry on his shoulders now, too.

All-in-all we had an enjoyable day.  He sat in the recliner while I did my roaming around inside and outside the house.  I made him get up and help me with the kitchen after we had our soup.  I think he really didn't want to, but I reminded him that our nurse told us he needed to move around, stretch and do some coughing.  Doesn't need to get pneumonia down in his lungs...

He has gotten growth factor shots the last two days and will until he begins recovery.  Growth factors stimulate bone marrow to produce blood cells.  He will be aching, along with all of the above I have mentioned.  He may feel like he has the flu. 

Sooooo, you see why I have begun sharing all of this news and side effects (burden) with him.  It gives me some relief and helps me to sleep at night knowing he can help me if he notices any of the side effects while I am asleep or if I'm in the spare room.  I haven't shared any of this information with him in all these years.  I guess I wanted to protect him. I mean, Really... He has enough to worry about just having that word branded in his brain --- Cancer. 

I guess 'burden' wasn't a good choice of words.  But, then maybe it is.  It's the drugs that are a burden.  He is a joy.  He stays positive, makes jokes, doesn't complain and helps me around the house.  I can see he is tiring with the neutropenia.  So, I never complain when he doesn't feel up to helping out. 

With that......  We are at Day 2 of 17... (maybe a shorter distance since he dropped early).  We are still planning our biker trip November 6.  Don't worry... We won't be riding the bikes.  We are going to wait to the absolute last minute to cancel our reservations, IF we have to.

Thank you for listenting... Whomever you are.

Good Night and Love --- Pepper

Platelets -- Word for the Day -- Friday, October 23, 2015

Platelets -- What are platelets and why are they important?

The purpose of platelets

“Platelets are the cells that circulate within our blood and bind together when they recognize damaged blood vessels,”  “When you get a cut, for example, the platelets bind to the site of the damaged vessel, thereby causing a blood clot. There’s an evolutionary reason why they’re there. It’s to stop us from bleeding.”

What makes platelets change their shape?

Platelets, the smallest of our blood cells, can only be seen under a microscope. They’re literally shaped like small plates in their non-active form. A blood vessel will send out a signal when it becomes damaged. When platelets receive that signal, they’ll respond by traveling to the area and transforming into their “active” formation. To make contact with the broken blood vessel, platelets grow long tentacles and then resemble a spider or an octopus.

Sooooooo, here we go on the roller coaster.  Poppy ironed his clothes again for work today.  He looked extremely well this morning.  I slept in the spare room because before I even got through the news last night he was snoring.  So, I didn't even make an attempt to ask him to turn over.  I just grabbed my three pillows and tiptoed out. 

His platelets have begun to drop.  They are at 27 today.  The normal range is 150-450.  He usually sits well at 75.  When they drop below 20 they will give him more by IV.  They are like a blood transfusion except they are cream colored. 

His CRP (crap) is at 20 and is was a minus 5 yesterday.  So, he has a low grade infection, BUT this is to be expected the day after transplant.  I don't know why.  He was given an IV drip of Invanz which is an antibiotic.  He will get that daily for 30 minutes until his CRP comes back down. 

The Granix (growth factor shot) will be given daily also until his WBC comes back up.  It is at 1.13 today and normal is 3.60 to 9.50. 

His appetite is dying a little.  I fixed pork loin and mac/cheese last night.  He ate two helping of the mac and none of the pork loin.  Today I was going to take him a whopper and shake like I always do, but he indicated he didn't want a big sandwich.  We agreed on Burger King chicken fries and a small shake.

He has already been advised he will probably have to have a unit of blood tomorrow... BUT, no worries. 

We asked them yesterday to stop the Lovenox as the tops of his hands are bruised and when he bumps or touches them they bleed in some spots.  I hate that for him. 

We (HE) will be keeping up with his fever the next few days.  I say "He" because we had a knock down drag out over the thermometer I was using the other night.  I have a new digital the takes TWO seconds.  I just can't imagine something working that fast.  So, I went and got our old one.  He started grumbling from the start.  Wouldn't even hold it in his mouth until I basically shoved it in.  Talk about a pouty face!!!!  He grumbled again and I asked what was the problem.  Okay.....are y'all ready for this???? The old one takes THREE minutes and he doesn't want to wait.  I had to leave the room on that one.  Actually, I had to go downstairs to contain myself.

I read all the side effects to everything he takes and I usually don't share those with him.  I don't want to worry him.  This was the day of the Melphalan... I was so worried about the side effects and the fever was one.  I know y'all are gonna think I'm just nasty to him, but this was what I did when I returned upstairs.

"Jim -- I don't share with you all the side effects to drugs because I don't want to burden or worry you.  I want you to rest, BUT here are the side effects to Melphalan...." (I read them ALL).  Then I grabbed my pillows and told him -- "I am taking this worry off my shoulders this evening and I'm pushing them on to your shoulders! Good night!"  I wish I could tell you I felt better about this, but I didn't.  We are okay now.

I had forgotten how bad the smell of the transplant could be...  Everyone says Roasted Corn, but I say Roasted Corn and Scalded Milk.  It was so bad when we got home yesterday I made him take a shower.  But, of course, since it's inward the shower didn't help.  Another reason I slept in the other room.  The dogs didn't even stay around him.  He can't smell it.  I had to spray my truck after we got home yesterday. He will have that smell another 3-4 days, so there is really no reason for me to even change sheets.

I had a glass of ice water on the end table in the den last night.  I was fixing dinner and I retrieved my water and took a big drink in the kitchen.  I almost spit it out.  I walked back to the den and asked him if he picked up my water.  He confessed he took a drink.  So, the smell literally comes from inside his body and out through his mouth, too.  I've been using a lot of Vicks inhaler when he's around me.  LOL

I am working today, even though it's my day off.  I need to do some catching up even though the time I have taken was vacation.  I plan to work tomorrow on payroll.  Now my boss sends me a message and advises the budget preparation needs to begin.  Also, the new committees have to be formed.  I'm not gonna get stressed about it.  He does tell me to let him know if I need help.  I tried that when Poppy was in the hospital and what I got was he was tired of doing all the work...  I still can't figure out what work he was talking about.  I'm the only one that can do my job.  (smile...not)

I did take Poppy into work today.  I know his job is stressing him more than mine ever could.  I don't know what we are going to do about the next week or so.  His APN told us yesterday that he has approximately 17 days to recovery and release.  Today is Day 1.  If he stays on schedule he will be neutrapenic by Monday or Tuesday. 

The clinic is still amazed and happy that he hasn't been sick with diarrhea or vomiting.  So am I. 

I think that's it for the day.....  I'm taking work home with me tonight so I won't be blogging.  I'm also working on two rental houses from the church.  They have been vacant for 2-3 months and I the communicator between the realtor and the boss.  I was emailing at 10:00 p.m. last night.... I wanna retire!!!

Good Afternoon and Love -- Pepper

Post Stem Cell Transplant -- Words for the Day -- Thursday, October 21, 2015

Post Stem Cell Transplant --

I won't be getting personal tonight about the 5.25 millions babies Poppy birthed today.  He had two bags that began at 10:00 a.m. and finished up at 10:21 a.m.  I'm not going to share tonight about us deciding where we are going to sleep because of his odor.  A shower doesn't help and he will smell the next few days.  I'm not going to share today about his BP peaks that were as high as 155/72.  I won't share with you today about our argument about a thermometer and as a result he slept downstairs much of last night and then we switched about 4:00 a.m. 


I would just like for you to read the post stem cell infusion information.  Then, I will share the above humorous stories tomorrow...  He has about 17 days to recovery.. That means it will take that long for his WBC, RBC and platelets to get back to normal... 


Enjoy the following -- I may give you a test later......


============
There is an odor sort of like creamed corn, which is from the solvent (DMSO?) that the stem cells are stored in as they are frozen down to the temp. of liquid nitrogen. IT is very pronounced on one's breath and through the pores after the infusion of stem cells.

The big day: infusion of stem cells

After the conditioning treatment, you will be given a couple of days to rest before getting the stem cells. They will be given through your IV catheter, much like a blood transfusion. If the stem cells were frozen, you might get some drugs before the stem cells are given. This is done to reduce your risk of reacting to the preservatives that are used in freezing the cells.

If the stem cells were frozen, they are thawed in warm water then given right away. For allogeneic or syngeneic transplants, the donor cells may be harvested (removed) in an operating room, and then processed in the lab. Once they are ready, the cells are brought in and infused (given to you). The length of time it takes to get all the stem cells depends on how much fluid the stem cells are in.

You will be awake for this process, and it doesn’t hurt. This is a big step and often has great meaning for recipients and their families. Many people consider this their rebirth or chance at a second life. They may celebrate this day as they would their actual birthday.

Infusion side effects are rare and usually mild. The preserving agent used when freezing the cells (called dimethylsulfoxide or DMSO) causes many of the side effects. You might have a strong taste of garlic or creamed corn in your mouth. Sucking on candy or sipping flavored drinks during and after the infusion can help with the taste. Your body will also smell like this. The smell may bother those around you, but you might not even notice it. The smell, along with the taste, may last for a few days, but slowly fades away. Often having cut up oranges in the room will offset the odor. Patients who have transplants from cells that were not frozen do not have this problem because the cells are not mixed with the preserving agent.

Other short-term or immediate side effects of the stem cell infusion might include:

• Fever or chills
• Shortness of breath
• Hives
• Tightness in the chest
• Low blood pressure
• Coughing
• Chest pain
• Less urine output
• Feeling weak

Again, side effects are rare and usually mild. If they do happen, they are treated as needed. The stem cell infusion must always be completed.

Recovery after infusion

The recovery stage begins after the stem cell infusion. During this time, you and your family wait for the cells to engraft, or “take,” after which they begin to multiply and make new blood cells. The time it takes to start seeing a steady return to normal blood counts varies depending on the patient and the transplant type, but it’s usually about 2 to 6 weeks. You’ll be in the hospital or visit the transplant center daily for at least a few weeks.

During the first couple of weeks you will have low numbers of red and white blood cells and platelets. Right after transplant, when your counts are the lowest, you may be given antibiotics to help keep you from getting infections (this is called prophylactic antibiotics). You may get a combination of anti-bacterial, anti-fungal, and anti-viral drugs. These are usually given until your white blood cell count reaches a certain level. Still, you can have problems, such as infection from too few white blood cells (neutropenia), or bleeding from too few platelets (thrombocytopenia). Many patients have high fevers and need IV antibiotics to treat serious infections. Transfusions of red blood cells and platelets are given until the bone marrow is working again and new blood cells are being made by the infused stem cells.

Except for graft-versus-host disease, which only happens with allogeneic transplants, the side effects from autologous, allogeneic, and syngeneic stem cell transplants are much the same. Problems may include gastrointestinal (GI) or stomach problems, and heart, lung, liver or kidney problems. (We will talk more about these later, in the section called “Problems that may come up shortly after transplant.”) You might also go through feelings of distress, anxiety, depression, joy, or anger. Adjusting emotionally after the stem cells can be hard because of the length of time you feel ill and isolated from others.

Good Night and Love -- Pepper

Melphalan - Word for the Day -- Wednesday, October 21, 2015

Melphalan --

I am going to move on without the definition or pronunciation of Melphalan.  I know about this drug and we were educated about it.  So, I will just tell you about our days' experience with it.




We had a fun day.  Started with us getting one of our favorites RNs, Steve.  He has taken care of us many times before and has been in the myeloma clinic for over eight years.  He is an instructor for teaching patients and caregivers on how to read labs and he can answer any question.  He tells everyone he makes me cry whenever I see him.  Which is just about true.


He and Karen took care of us one Sunday just before Poppy went into the hospital in August.  It was a slow day and the two of them were doing a little quiet karaoke on the computer.  Poppy and I smiled as we listened.  I don't think they were practicing as a duet, I just think they were bored. 


As time passed and we were there much of the day, Steve finally asked if we had a request.  We both ask them about "Lean on Me" by Bill Withers.  We explained it was our favorite song when we started our relationship in 1986.  So, they turned the volume up and began.  The more they sang, the harder I cried.  I couldn't control myself.  When they finished Steve came over and put his arm around me and asked, "Was I that bad?"  I just explained it was the song and that Poppy was just not doing well.


He saw me another time later that week and I was standing in the hallway up against the wall sobbing again.  He hugged me again and told me everything would be okay.  Anytime after that he laughs and tells everyone I cry when I see him coming.


  He came to check on us last Sunday and I was crying... He smiled... Then I told him about Bill Goodness passing....  It was a sad day for all in Infusion.


Sooooooo, today when he came into the room to begin the Melphalan I was rubbing my eye as it's been tearing a lot.  He laughed and said, "Here we go again.  EVERY TIME you see me coming, you start crying!"  We love our nurses.


Okay... ONWARD!  Strict instructions were given for Poppy to eat ice and popsicles 30 minutes before and during the IV.  He needed to do it an hour afterward, too.  This would prevent the Melphalan from burning an causing blisters in his mouth.  Sooooooo, they waited until he did that and they took labs.  He explained they would order the drug as soon as they were certain his mouth was totally cold.  When they ordered it, it had to be given immediately as it would be a count down on it being "Hot"... Not really "hot" heat, but active... 


He did very well.  Soooo, well that I dropped him off at his office.  Yes, he ironed his clothes again today, but he didn't mention driving.   Before he got out of the truck I told him he needed to use a Kleenex to rub the strawberry coloring off his lips and teeth from the popsicles!  Y'all know how vain he is!!!  LOL  Since I had already taken the day of myself, I did a little shopping and took time to see someone special.  I got home around 3:30 p.m. and he called wanting me to retrieve him. 


When he got in my vehicle, he looked great with those rosy, puffed up cheeks, but he acted like he was collapsing in the seat as he exclaimed, "AHHHHHHH, I made it!  I got so much done, but I'm exhausted!"  We laughed...


His counts are still dropping slowly.  They are doing what they should.  His weight is down 4 lb. from yesterday.  So no fluids or Lasix today.   By this time next week he will be neutrapenic (low immune system).  He will probably be that way for a week.  He will continue labs every morning from Friday to Tuesday and then no more labs until Monday, November 2. 


Tomorrow is the BIG DAY!  He should be going into labor around 9:30 a.m.  SIX MILLION babies!  Can you believe it?  Since he will be in a room alone and he will be heavily monitored, I am going on in to work until around noon.  He will be a lot different when I pick him up.  He will have a different smell.  A lot of patients and nurses call it a "roasted corn" smell.  It smells like scolded water to me.


His first transplant in 2008, we had to change his deodorant, cologne and other things he wore with a scent.  His whole body chemistry changed.  His skin is the same as it was then, too.  Perfectly smoothe like a baby's.  Although he hasn't had to shave in a few weeks, he did shave a little this morning.  But, that will change again very soon.  He is even gonna be smoother. 


He did the dishes tonight as the kids and I came upstairs for prepare for bed.  He came up and couldn't find me.  Asked me what I was doing and I told him I was plucking my eyebrows.  He says, "I would pluck mine, but then I wouldn't have any!"  He never loses his sense of humor....and still doesn't complain.


He has had the chemo taste in his mouth tonight.  His BP is kinda low and I'm keeping a check on his temp.  He hasn't had Dex since yesterday, so maybe he will get some sleep tonight.  But, he still has a huge appetite.  The tops of his hands are bruising (a side effect).  He went to the restroom today and pricked a small needle sized hole on his little finger.  There was blood coming out heavily.  He always has a band aid in his wallet.  When his platelets get below 30,000 they will stop the Lovenox (blood thinner stomach shots).


We sat in the garage tonight as his smoked one of his little cigars.  He took a deep breath and said he'd be glad when this is over.  I reminded him, we have all next week and then he needs to recover.  He knows that...so he reminded me we are five days in.  Almost half way through.  He did agree he was glad he hasn't driven this week.


Pray for us tomorrow!!!!! 


Good Night and Love -- Pepper

Cytarbine - Word for the Day - Tuesday, October 20, 2015

Cytarabine

(sye-TARE-a-been)


Cytarabine or cytosine arabinoside (Cytosar-U or Depocyt) is a chemotherapy agent used mainly in the treatment of cancers of white blood cells such as acute myeloid leukemia (AML) and non-Hodgkin lymphoma.^[1] It is also known as ara-C (arabinofuranosyl cytidine).^[2] It kills cancer cells by interfering with DNA synthesis.


It is called cytosine arabinoside because it combines a cytosine base with an arabinose sugar. Cytosine normally combines with a different sugar, deoxyribose, to form deoxycytidine, a component of DNA. Certain sponges, where it was originally found, use arabinoside sugars to form a different compound (not part of DNA). Cytosine arabinoside is similar enough to human cytosine deoxyribose (deoxycytidine) to be incorporated into human DNA, but different enough that it kills the cell. This mechanism is used to kill cancer cells. Cytarabine is the first of a series of cancer drugs that altered the sugar component of nucleosides. Other cancer drugs modify the base.


I know these definitions probably confuse you, but I'm happy you don't have to use these words or see them often.


This is the last day for this drug and the Etoposide.  Then tomorrow will be the BIG one -- Meophalan.  It will be about a 30 minute IV.


As I mentioned yesterday, I was encouraged by his need and want to go into work after clinic.  We came home instead.  This morning he ironed his clothes again and informed me his BP was 108.  His cheeks were rosy and I could tell he felt good even after we didn't sleep much.  I was NOT encouraged when he asked me, "what do you think about following me to the clinic and when I'm done I will go into work so you can work al; day?"  I not only gave him -- that look, I responded with, "NO!  They have told you NOT to drive!"  Then I left the room. 


He had been buttering me up all morning and I fell for it... things like - those eggs were Peeerrrrfffect this morning; your hair looks great; baby, I'm sorry I kept you awake last night..


I truly expected a fight, but when we got into the truck he agreed it was a good idea we go together. He woke up with a headache and it was getting worse.  I gave him Tylenol before we left.   I told him then that anything could happen with his BP, nausea or anything and we didn't want that.  Soooooo, we were okay.  Whew!


It was a long ride to work because of traffic.  We had to reroute... Tommy called us and warned us of backed up traffic.  We were only 15 minutes late.  I dropped him off and headed in.


I got a good few hours in and text him about lunch and when he would be done.  He called me instead of texting... Long story short -- His BP skyrocketed to 144 and his heart rate fell to 48.  As he explained things to me about EKG, changing meds, taking blood and some other things, I could tell he was exasperated.  So, I left work at 11:30 and picked him up a burger and his favorite chocolate shake.


First words out of his nurses' mouth was he didn't entertain them like he did yesterday.  He was laid back and looked tired.  He perked up when he saw the shake. 


We took him off the BP pills to raise his pressure.  He didn't get fluids because he is retaining too much and they don't want it to put pressure on his heart.  He has gained 14 lb. since Saturday. He is looking like the Michelin Man! They gave him Lasix (this gets rid of fluid in your body) before we left.  He still had a headache so I asked permission to give him Tylenol when we got home.  He isn't suppose to do that much. 


Since the Lasix is draining the fluids he will probably get a bag tomorrow to rehydrate him.  Sounds like a vicious circle doesn't it?  But, these folks KNOW what they are doing.  For that, we are thankful.  God watches over us and them every day.


He gave the APN the wrong med sheet today that I prepared of all his current medications.  I think she almost freaked out on him because low dose aspirin was on it and a few other things.  I showed him the date on it so he would know it wasn't the right one.  We are going by the one they gave us with the chemo we received in the doc's office on Friday.  For some reason he forgot that.  So, we are all on the same page now.  He was trying too hard.


Today was also the last day for his Dex... I think he is glad.  Making so many trips to the kitchen all night is wearing him out!  LOL 


He had a little company while I went and got snacks for him when he doesn't feel good.  When they left and I came home he went straight to bed at 4:00.  His BP was 144.  I closed the curtains and he put a pillow over his head.  I knew then he felt bad.  So, I left him and kept the dogs out and covered Woody so he wouldn't squawk.  He stayed in bed until 6:00.


He wanted hot dogs and chips for dinner.  I had a fresh avocado so I fixed some dip without the hot stuff.  He must have missed all of us because he came downstairs looking like a little boy just awaking from a nap.  Said he knew I was up to something and he didn't want me to be alone.  He ate two hot dogs, fritos and two helpings of dip.  Now he thinks he ate too much...  :)


We are down for the night at 8:00.  His BP is 105/62 and his heart rate is 72.  I believe we will both sleep better now.  I'm not working tomorrow.


God is good.... All the time!  He works in ways we cannot see.


Good night and Love -- Pepper

Etoposide - Word for the Day -- Monday, October 19, 2015

Etoposide

(e-TOE-poe-side

What this drug is used for:

• Testicular, bladder, prostate, lung, stomach, and uterine, cancers.  Hodgkin's and non-Hodgkin's lymphoma, mycosis fungoides, Kaposi's sarcoma, Wilm's tumor, rhabdomyosarcoma, Ewing's sarcoma, neuroblastoma, brain tumors.
• It also may be given as high-dose therapy in bone marrow transplant setting

It's been an unusual day... I fixed Poppy scrabbled eggs this morning and he fixed the toast.  Trying to get him to eat with his meds.  For some reason that threw him off.  I have been fixing oatmeal, cereal or easy over eggs for him.  It only takes a few minutes and I've convinced him it only takes five minutes for him to sit and eat. 


He ironed his dress clothes so I was encouraged he wanted to work after his treatment today.  When I saw him put his laptop bag in my vehicle along with his tie, I was truly encouraged he wasn't going to attempt to drive. 


We got half way to UAMS and he almost shouted out... "I didn't take my Dex!"  It's a must when taking chemo.  I just told him to tell the nurse and they could give him some.  Sooooooo, I dropped him off at the door and we were both merrily on our way.  I headed out to work.


So, yesterday, today and tomorrow he gets the Etoposide and Cytarabine, but separately.  Then, remember, he gets the big one on Wednesday.  Do you remember the name of that one?


My little 89 yr. old volunteer came in and before I left at noon I called Poppy to see if things were running smoothly.  He explained to me they tried to give him Zofran (for nausea), but he declined it.  Told them he had it at home.  I asked him to look at his meds sheet and he would see that Zofran is greyed out with "administered in Inf. 4".  So, with my instruction he told them he did in fact need it.  I stopped by Burger King and got him a Whopper and a chocolate shake.  That was good medicine for him today... LOL


Just as I sat down to eat in his POD with him, his IV pole started beeping and his two bags were empty.  He had to have a half bag of fluids, too.  The nurses are so good to us they let us finish our sandwiches before they unhooked him for the day.  We started gathering everything up to leave and he asked me if he had to go to work.  I told him I really hadn't planned to go back to work.  He shared with me he felt gloomy.  So, we made a couple of stops on the way and came on home.


He has gained 12 lb. since Saturday.  His face is getting more plump.  He looks very healthy with his rosy cheeks.  The Dex is doing it's job.  But, so is the chemo.  His platelets are gradually dropping.  By this time next week he will be bottomed out with his counts. 


I checked his pill packet when we got here.  I discovered he didn't take any of his pills Sunday morning or this morning.  He thought he did take some this morning.  The nurses laughed when I arrived because he claimed he missed his Dex because I fixed him a good breakfast and it got him off track.  So, I've converted back to putting his pills in a Night/Day cup.  The little red solo shot cups marked with a permanent marker.


We both know now why he slept so good last night without being hyped up all night.  I'm hoping not taking the Dex yesterday at all doesn't cause a bad side effect.  We can't do anything about it now.  Just move forward. 


He slept in the recliner this afternoon for a good while.  I came upstairs and laid down, but I just can't sleep when the sun is up.  We sat on the love seat tonight and watched some TV.  I couldn't keep my eyes open so I got up and fixed dinner.


Gonna call it a short night.  He's on the phone working and I still can't hold my eyes open.  We have both been sneezing, so I hope we aren't coming down with the sniffles.  I think the problem is the weather being so dry.  He thinks I need to take some of his antibiotics... I just might do that...


Good night and Love -- Pepper

Carmustine "Second Chapter" - Word for the Day -- Sunday, October 18, 2015

Holy Cow!!!!

How do you handle a drunk that is hyped up on alcohol, steroids along with a noon appetizer of Ativan?  You just roll with the flow and hope to get a little bit of sleep.


As soon as we arrived at 8:30 a.m. in Infusion yesterday, we were advised that Carmustine has a lot of alcohol so we should expect Poppy to be drunk must of the day.  He had already taken his daily dose of five Dex (steroids).  AND, to keep him from getting nauseated from the chemo he was given Ativan.  Soooooo, pretty much by 10:00 a.m. he was on the drunken path.


During that time he had me going to the snack bar for coffee, snacks and then lunch.  The snack bars in the cancer center are closed on the weekends so I had to journey over to the hospital by foot, but I love to walk at a fast pace, so it was a break for me from sitting all day.  But, the Dex was making him pretty bossy about the hunger time frame. 


I did take the opportunity Friday and Saturday to visit ICU to see Bill and Kim Goodness.  The Kansas Highway Patrol trooper.  He wasn't conscious as she and I visited, but it seemed somehow he felt my presence.  She and I shared some similar stories and I was able to see some of the same ICU nurses and doctors that took care of Poppy in July and August. 


They were getting his levels up so he could go home for a peaceful goodbye with his family.  Within an hour yesterday his family and friends collected over $7,500 for med flight to take him home.  Today I heard in 24 hours they collected $24,000.  Sad to say, he made another journey home.  He is now in heaven.  She was alone with him when he passed.


I cried much of the day while we were at clinic, because as we spoke yesterday I relived some of the feelings I had while Poppy was in ICU.  Not knowing if he would come home.  The nurses in Infusion knew Mr. Goodness very well, so there was a heavy sadness there today, too.  Please keep his family in your prayers.


The nurses were quite surprised that Poppy tolerated the chemo from yesterday.  They told us the Carmustine was very massive.  Then they did a piggy back on the Etoposode and Cytarabine.  Today they couldn't do a piggy back of the last two.  They had to be single, just as they will be tomorrow and Tuesday. 


Today his RBC (red blood count) looked good.  His platelets, WBC and hemoglobin dropped.  Hemoglobin was 7.7 so he had to have blood.  Not out of the ordinary.  His CRP (we call that crap because it means inflammation/infection) was elevated to 10 from 6 yesterday.  Still not bad because his WBC is dropping.  So no worries thus far. 


Wednesday he will have another massive dose of some strong stuff -- Meophalan.  We were warned today and reminded that he is on some pretty hefty stuff.  He was especially warned because since the weekend is over he is informing them he will be driving himself to/from clinic.  I had to recruit some higher up RNs today to tell him that.  One was even a male.  They explained to him he could get there and his BP could drop OR he could get real sick or nauseated from the chemo and they would have to give him the Ativan and he wouldn't be able to drive.  So, I will be driving him in the mornings to clinic and drop him off and head to work myself.  Pick him up around noon and take the rest of the day off. 


THEN, we get home today and he informs me that when I get him home at noon, he can change and take himself into work.  Here we go again.  I remember this soooooooo well from his last transplant.  Especially when our helpers would escort him, but he would drive under the influence of the Ativan.  They would call me and tattle on him and eventually they didn't take him anymore because he would railroad them.  I don't like this part of the steroids.  It causes a lot of friction and a lot of worry on me.


We got half way home yesterday and I realized they had not given him his Lovenox (blood thinner gut shot).  Just as I mentioned it to him, my cell rang.  It was his chemo nurse.  We finally agreed I could give him low dose aspirin instead of going back.  Chemo can cause clots.  That's one of our regulars.  So I was good with that.


He has a history of low BP so he is on a med to increase it.  He's been checking it regularly.  It was sure taken a load off me.  We are sharing the "caregiver" role the last two months.  He seems more attentive of me.  We both realize how much of a toll the last few months have been.  Anyway..... ONWARD.  Enough of the mushy stuff. 


We got a new machine that keeps his history.  It's very dependable/correct on it's readings.  He has been taking this script for two months.  Yesterday his BP was checked very 15 minutes during the Carmustine.  Once was up to 125/ ....  I just look at the top number for some reason..  Kinda compare it with me that is always right on and consistent.  I look for the consistent.  120/80.  His use to always be 97...Normal for him.  Sooooo, the low yesterday was 91/..  But, it hopped right back up.  So they increased the pill from twice a day to three times.  So, I ask... morning, noon, bedtime?.  Because we do morning and bedtime. Wow... we got some frowns on the bedtime.  Sooooooo, remember this ALL you kids.. DON'T take BP meds at bed time.  Ever.. It's breakfast, lunch, dinner.  When he took his BP last night it was 144/56... He was soooooooo happy and thought the nurses would be proud, but I was frightened since he had taken the last two within just a few hourse of each other. 


Soooooo, when we got home we mis-calculated and he had one at 6:30 p.m and another at 9:30 p.m.  We some very engertic yesterday and did a LOT of chores around the house.  He was like a fly.  If I could have made a slow motion viodeo, I wouldn't have been able to capture him.  He was that quick.  Hand cleaned all the windows on my truck and his.  Then he did mine again today, TWICE.  Once on the way out at 8:00 a.m. and then when we got home this afternoon at 3:30 p.m. And, touched up a few spots when we retuned from dinner at 6:00 p.m. 


Last night was rough on me.  I got in bed an hour earlier than he.  My body ached so bad from being in limited positions yesterday and all the walking.  Let me remind you... I so enjoy walking...  I smile at everyone my eyes come in contact with.  I love this place so much, and we both see so many familiar faces.  He has so many compassionate friends, doctors and nurses.... I just can't put it into words.  It comforts us to be there.  I believe all the patients there would share the same....


We met a couple today from Ohio.  They were a God-sent.  They were in the cubicle across from us.  We hear their labs and conversations.  We are all family there.  He was diagnosed last year.  They have four children...two are two year old twins.  What a story they have.  That's why I love walking those halls.  Maybe I could show them the comfort we feel, they will feel it, too.  I guess y'all can tell we both had a topsy-turvy weekend.  I'm getting mushy again.  ONWARD!!!


I'm gonna wrap it up tonight.  I could go on forever sharing with you about the things we shared together.  He never complains... Edith (his seven year Infusion nurse) made two trips back to check on us today.  She would stick her head around the corner.. She's been through a lot with him.  She had been through a lot with Mr. Goodness, too. He sees her and they laugh out loud... 


I better get downstairs.. he's into the ice cream...  He's eating so well....  I slept on the couch last night.  Every time I fell asleep he would wake me up and ask me if I was ready to go to sleep.  I finally got up at 1:00 a.m. and said, "I guess I'm not!"  We will all laugh about this tomorrow when we share it with the nurses.  One in a million side effect of Dex.  He had the hiccups today, too.  We couldn''t get home fast enough.  He keeps hiccupping in front of the Verizon girl today that worked on his phone... (That's another story -- don't get me started)!!!!!


Good night and Love -- Pepper 


p.s.  I'm so tired, I'm not proof reading this.  You're on you own... No complaints about spelling and grammar are acceptable. 

Carmustine - Word for the Day - Friday, October 16, 2015

Carmustine

Generic Name: carmustine (kar-MUS-teen)

Carmustine is used for:

Treating brain tumors, multiple myeloma, Hodgkin disease, and non-Hodgkin lymphoma

This new treatment for Poppy is called BEAM.  The nurses call it "Beam Me Up, Scottie"


Okay, Kids...... The next few days I will be posting words like the one above.  These are the chemo drugs that Poppy will have for the next five days.  Look them up on the internet.... OR, I have Medscape app on my phone and it has some very good information... BUT, a lot of it can be confusing unless you're a doctor.

Furthermore, don't get freaked out when reading up on these drugs.  He will be monitored every day with labs.  So if anything is abnormal, they will know it immediately.  I generally just look the drug up for the side effects so I can relate these to Infusion or the doctor or email the nurses for any abnormalties.  The last treatment he began last year, Carfilzomib, indicated it had stroke effects that could occur within 72 hours of first dose.  The nurses even warned me of that...  OMGosh... I watched him like a hawk, but he made it.

Today we had our visit with Dr. Z.  We have dreaded it all week.  We knew it was just a follow-up and to inform us of the drugs he would be taking.  We already knew he would be carrying a bag with at least four chemos in it for five days, then the transplant and then more chemo. We were remembering back to 2008 when he carried the bag, but we didn't remember the five days after the transplant.  I was worried because I couldn't figure out why they would give him new babies next Thursday and then try to kill them out in the five days afterward with more chemo. 

We took time to have lunch before our visit.  I was sick all morning and was concerned I may be coming down with a stomach virus or the flu.  I really worried about how that would affect me as the caregiver the next week.  After we ate lunch and finally got up to clinic I felt better.  I think I just needed to see Poppy's face and that he was okay with everything we were about to dig into.

His very first question to Dr. Z was --- "I've been feeling wonderful the last few weeks.  My bone marrow biopsy and PET scan came back looking very good.  I had nine new lesions and since August I have three.  My labs are looking good and recovering nicely.  So why do I need all this chemo and the transplant? Can I not go back on the maintenance I was on before I got sick?"  Dr. Z -- "Your last chemo didn't work very well.  You got sick and you had new lesions come up.  We want to get you back in remission." 

Get this... He asked us to verify the stem cells Poppy received in his 2008 transplant.  Remember, he has 19 million in storage.  They took 20 million in 2008.  So, we told him 1 million he received.  He kinda rolled his eyes and wanted us to remind him what doctor did the 1 million.  We told him.  Then he informed us the 1 million was not enough.  Soooooooooooo, next Thursday he will be receiving SIX MILLION stem cells.  That means he will be getting SIX million new babies....  How in the hell are we going to feed six million new babies?  LOL

AND, I laid the schedule out before him that we had received where it indicated he would receive five days of chemo AFTER the transplant.  I told him that really worried me.  He looked it over real good and indicated that the schedulers use the wrong wording.  He, too, said there would be no way we would be killing the new babies with chemo after the transplant. 


I love this facility, because they answer all your questions and don't treat you as if you are stupid or you are beneath them in asking or being inquisitive.

So, we are READY to get this show on the road in the morning at 8:30  a.m.  I asked, too, how long will it take for him to become neutropenic (low immune system).  It should be by next Saturday.  So it will be mask city around here.  No visitors and definitely no work, except in the house. 

Here's a list of the chemo drugs he will be getting the next five days  OH, I forgot to mention -- He WON'T be carrying a camera bag around.  These will be IV, but done in Infusion IV clinic while he is there.  So, here they are:  From Saturday, 10/17 to Tuesday, 10/20 -- Carmustine, Etopsode (VP-16), Cytarabine (Ara-C). 

On Wednesday, 10/21 it will be the Mamma-Jamma - Meophalan (Alkeran). Then, on Thursday, 10/22 he gets the stem cell infusion which will be like getting a blood transfusion.  Three to four bags. 

When his WBC (white blood counts) drop, he will be receiving growth factor shots.  He will feel like he has a bad case of the flu because this will make his bones harder.

He will be receiving Lovenex injections in his stomach on day 1-6.  This is blood thinner to prevent blood clots.  When his platelets drop below 30,000, these will stop.  His platelet this week have been 75,000.  I would like to see them over 150,000...

Onward!  I bathed the kids today.  Their skin was so dry from the dirt and dry weather..  When I got out of the shower with them I noticed the balcony and the yard was soaked.  I almost jumped for joy that it had rained until I remembered I set the water time for the sprinkler when I got up this morning... Dammit

I have to share, too, I put a motion light over Poppy's toilet upstairs.  I feel certain he will be getting sick with this chemo and will be making night "runs" to the toilet in the dark.  I'm proud of myself.   I haven't told him, yet, so I hope when he gets up in the night and the light comes on that  it doesn't scare him enough that he pees on himself!  (BIG gut chuckle here)

Another bit of info... When he gets the Melphalan -- his whole body chemistry changes.  His body smells will be totally different.  Last time we had to do things like change his deordorant and cologne.  They (nurses) all call it "roasted corn".  I call it "funky".  It is quite noticeable.

Sooooooo, no 24 hour chemo bag.  No five days of chemo after the transplant.  No news we can't handle.  We feel a lot better and can do this with an open mind.  We know the signs to look for since we have been through it before.  We know the stupid questions won't go unanswered.  There are no stupid questions.  And, I double checked to make certain we have hiccups pills... (steroids cause hiccups).  AND, much of the dex (steroids) he has this time is eye drops.... I hope those things don't pop out of his head when he's doing all that extra energy house cleaning at 2:00 a.m.!!!

Good Night and Love -- Pepper

Affluent - Word for the Day -- Wednesday, October 14, 2015

affluent  \AF-loo-unt\

 Definition:  adjective

  1.     flowing in abundance

  2.     having a generously sufficient and typically increasing supply of material possessions

 

Okay, Kids..... Let's be honest!  I'm scared.  I get emails on Poppy's UAMS account when he has results on his labs, we have a payment due on one of his 16 accounts, or his lab appointment is due or any testing that is scheduled and, of course, his doctor's appointments. 

 

Soooooo, I got the much anticipated email yesterday.... It's the appointment schedule we've been waiting for... Here it is:
 

                      Beginning Friday and lasting to Monday, November 2:

                      Friday, October 16, 1:30 p.m. -- Appointment with Dr. Z

                      Saturday, October 17,  8:30 a.m. - High dose resource (chemo)

                      Sunday, October 18, 8:30 a.m. - High dose resource (chemo)

                      Monday, October 19, 8:30 a.m. - High dose resource (chemo)

                      Monday, October 19, 3:30 p.m. - Labs

                      Tuesday, October 20,  8:30 a.m. - High dose resource (chemo)

                      Wednesday, October 21, 8:30 a.m. - High dose resource (chemo)

                      Thursday, October 22, 8:30 a.m. -- Stem Cell Transplant

                      Friday, October 23, 8:30 a.m. -- High dose resource (chemo)

                      Saturday, October 24,  8:30 a.m. - High dose resource (chemo)

                     Sunday, October 25, 8:30 a.m. - High dose resource (chemo)

                     Monday, October 26, 8:30 a.m. - High dose resource (chemo)

                     Monday, October 26, 3:30 p.m. - Labs

                     Tuesday, October 27, 8:30 a.m. - High dose resource (chemo)

                     Monday, Nov 2., 3:30 p.m. - Labs

 

This schedule is to change out his chemo bags every 24 hours.  I believe, if it's like in the beginning, he will have four different types of chemo running through his system with a stomach shot each day in clinic.  One will be "Red Devil".  If the bag leaks or the tube breaks we have to transport it back to clinic IMMEDIATELY.  If it touches your skin, it will eat it like acid!!! And, this stuff is running through his body!!!

 

We haven't spoken about the treatment, only for him to ask me to contact scheduling to change the bag outs to 3:00 p.m. so he can work during the day.  I tried that... I was informed it has to be a morning schedule because of the intense and brutal chemo he will be getting.  And, all the doctors and the most experienced nurses in Infusion leave at 4:00 p.m.  If anything comes up with him, such an infection, low counts, needing blood or platelets, it can be address early in the day.  I agree with that. 

 

I haven't discussed the reasons for the morning schedule with him, because he decided at the last minute yesterday he wanted to stop in at Luigis for a Date Night.  Something we haven't done since June when he began to get sick.  I haven't discussed the word, "brutal" with him either.  I don't think it is a word he needs to hear right not.

He needed a break to try to act normal about things...  It was a good break and we had one of our biker friends to join us.  We got to laugh.

 

He has an acquaintance at work that has been with property management for over 20 years, Marvin.  Marvin developed cancer last year and occasionally Poppy would give me updates on his condition.  Marvin passed away over the weekend.  I know it has really weighed on Poppy's mind.

 

Last night, after we got in bed, I looked back through my phone at dates trying to refresh my memory on the things we did during his last transplant.  I do have the yearly recurring dates of his last transplant, the bridging and everything, but only because they recur yearly. But, it doesn't give me our daily activities.  So, tonight I'm going to go back through my Daytimers to see if I can find when he went neutropenic, when he had to be confined, how long he was off work and other details. 

 

We just can't schedule anything right now with our work schedules.  I have alerted my boss that on some days I may call in unexpectedly for a vacation day.  I have six left.  He, however, has NO days left for the rest of the year.  He is so concerned about his job with the new management.  We will just have to take it as it comes.

 

My cooking will change after Saturday.  No more spicy foods!!!!!  Dangit, I was gonna make chili this weekend.  He claims to everyone, for some reason lately, that chocolate is a good source for potassium, magnesium and phosphate.... Hellllooooo, I see a batch of fudge and chocolate oat cookies coming down the pike!

 

I have been buying up extra groceries for the days he isn't well enough for me to venture out.  So, here comes my Word for the Day --- We are affluent in our needs for nutrition.  We have actually been very blessed to have any of the things we have.  We have worked hard over our years.  I am confident we will have many more years to have and enjoy things we are accustomed to.  We have spoiled ourselves!!

 

Good Day and Love -- Pepper