Ninlaro -- Word for the Day -- Wednesday, December 16, 2015

Ninlaro -- November 20, 2015 FDA Approval

Today the U.S. Food and Drug Administration granted approval for Ninlaro (ixazomib) in combination with two other therapies to treat people with multiple myeloma who have received at least one prior therapy.
Multiple myeloma is a form of blood cancer that occurs in infection-fighting plasma cells (a type of white blood cell) found in the bone marrow. These cancerous cells multiply, produce an abnormal protein and push out other healthy blood cells from the bone marrow. The disease may result in a weakened immune system and cause other bone or kidney problems. The National Cancer Institute estimates there will be 26,850 new cases of multiple myeloma and 11,240 related deaths in the United States this year.   
“As we learn more about the underlying biology of multiple myeloma, we are encouraged to see the development of new ways to treat this disease,” said Richard Pazdur, M.D., director of the Office of Hematology and Oncology Products in FDA’s Center for Drug Evaluation and Research. “Today’s approval is the third drug for multiple myeloma approved this year and provides patients with a new oral treatment that slows disease progression when other therapy has failed.” The FDA approved Farydak (panobinostat)in February and Darzalex (daratumumab) earlier this month.
Ninlaro is a type of cancer drug called a proteasome inhibitor and works by blocking enzymes from multiple myeloma cells, hindering their ability to grow and survive. Ninlaro is the first oral proteasome inhibitor and is approved in combination with another FDA-approved treatment for multiple myeloma called Revlimid (lenalidomide) and dexamethasone (a type of corticosteroid).
The safety and efficacy of Ninlaro were demonstrated in an international, randomized, double-blind clinical trial of 722 patients whose multiple myeloma came back after, or did not respond to, previous treatment. Study participants received either Ninlaro in combination with lenalidomide and dexamethasone or placebo plus lenalidomide and dexamethasone. Those taking Ninlaro lived longer without their disease worsening (average 20.6 months) compared to participants taking the other regimen (14.7 months).
The most common side effects of Ninlaro are diarrhea, constipation, low blood platelet count (thrombocytopenia), peripheral neuropathy (numbness and pain from nerve damage, usually in the hands and feet), nausea, peripheral edema (fluid under the skin causing swelling), vomiting and back pain.

Jim will begin this treatment after the holidays and will be on it for six months.  I will give more updates later. 

Adamantine - Word for the Day -- Wednesday, Decenmber 9, 2015

Adamantine   \ad-uh-MAN-teen\

 

Definition:  adjective – meaning

          -made of or having the quality of adamant

          -rigidly firm: unyielding

          -resembling the diamond in hardness or luster

Well, it won't be long until Santa harks at our door.  I cancelled my cast iron order today.  I ordered it almost three weeks ago and it hasn't shipped, yet.  Soooooo, I have saved a lot of money.  Now to see how long it takes my funds to get back into my account.  And, it will give me a chance to better look into getting Jim that recliner I have looked at for two years.

We had wood delivered this morning at 7:30 a.m.  This elderly gentleman backed his truck up our neighbors drive and he and Jim commenced to throwing the logs over the fence.  I haven't seen him that active in a while.  As he came back in to get ready for work (a trip to Russellville), I asked him if he got in a good work out.  He was shirtless and raised his arms like he was a body builder.  My heart was both overjoyed that he was able to throw the wood and saddened that his little arms look smaller than mine.

He is down to 175 lb. which is 30 lb. off his normal weight.  His energy seems to be coming back up, but we are still having difficulty with his appetite.  He did buy some ice cream yesterday for the apple pie I fixed Sunday.  He ate one hot dog, which was actually a fried weinie sandwich on a hamburger bun because he forgot the hot dog buns.  LOL

His labs are looking very good, except I had to increase his magnesium tablets to four a day instead of two.  Plus, he got a bag of magnesium in clinic on Monday.  I reminded him Sunday it was time to do a 24-hour urine bottle for Monday.  He did that, but I also noticed he only had about 2 in. in the bottle when he left.  I also noticed he hasn't been doing much liquid.  He has had more root beer and Sprite, but those drinks are so harsh on one's kidneys.  And, they are a sure fired trigger for kidney stones.

Sure enough, when he got to clinic he had to have a bag of fluid.  They weren't happy about the urine collection.  When he called to let me know he would be late because of it, I just replied, "I knew it!" 

Although his platelets are down to 90, his WBC has zoomed up to 10.65.  They were 8.60 last week and if you remember, they were 2.0 about five weeks ago.  The high range is 9.50 so his babies are still making.  His hemoglobin is sitting at 11.1 and if he is at 8.0, he gets a unit of blood.  So that is staying up to a good level.  His crap is minus 5... YAY

We have tried to get back into our day-to-day routines with Christmas approaching us.  I remember just a couple of months ago while he was sick and we were lying in bed I told him I needed him around for Christmas.  Now I think to 'myself' I hope he is around for next Christmas.  It slays me to think those thoughts and I wonder if he thinks them, too.  We just don't discuss those things because we know God is in control.  ONWARD!

We won't be having a big Christmas and we have discussed not even decorating, but there are a few things we MUST put out in memory of my mother.  We will be staying home and doing some small things.  I have promised him I would fix meatballs for dinner and of course, I have to do dressing for my Baby Boy.  Baby Boy will be doing deviled eggs and heavenly hash. 

We have planned a Date Night tonight.  Not at our usual place and not on the usual night, but with some of our Date Night kids.  We haven't been able to do our weekly Date Night since June. 

Please pray for us as he has his PET scan at 6:15 a.m. tomorrow with an MRI scheduled for 11:30 a.m. and another at 5:45 p.m.  That doesn't include labs and a visit with the Data manager.  We start over again on Friday morning with that dreaded bone marrow biopsy at 9:00 a.m.  He will be able to sleep through that while I sit in those uncomfortable chairs in the waiting room while I prepare myself to load him up and cart him home afterward.

I will ask you to pray for us again on Tuesday at 1:30 p.m.  We have our follow-up appointment with Dr. Z.  We will find out then if the chemo and stem cell transplant has been a success.  I'm ready for this man to blossom out like the Michelin Man.

I blew leaves in the back yesterday and got 3/4 of the yard done.  When Jim got home is was dark and I was still blowing.  So, glad I have flood lights in the back.  Just as I was going down the hill for another round, I ran out of gas and didn't have extra in my gas can.  Bummer.....  So, I plan to finish up on Friday as he is sleeping of anesthesia and before the rains come in on Saturday.

Good afternoon and Love -- Pepper

I didn't use the Word for the Day.... I forgot!  Damn Old Age!

Stress - Word for the Day - Sunday, December 6, 2015

Stress -

Definition: 

In a medical or biological context stress is a physical, mental, or emotional factor that causes bodily or mental tension. Stresses can be external (from the environment, psychological, or social situations) or internal (illness, or from a medical procedure).

If you have never looked at the full definition of this word, please take a minute to search.  The best definition is on MedicineNet.com.  I don't know of anyone that isn't under some kind of stress.  I think the question would be: how do they handle it?  Break down (as a form of release) or stay strong (because if you show weakness, you are weak)?


What a busy week we had!!!!!  We so enjoy the days off for the holidays, but it seems it takes longer to keep up.  Old age, I suppose.  Jim has been staying quite busy at work.  A lot of things going on.  I'm so happy he is getting stronger.  Still working on his appetite.


He has lost near 35 lb.  His normal weight is 205 or 200.  He is now at 176.  His color and skin look great.  His BP is staying at 100.  I still have him on the Midodrine.  I would be concerned he would be back in the 97s if I took him off. 


We have a busy week ahead of us.  He's wanting to put my truck in the shop, but we both have so much going on at work.  I have suggested we wait until next week.  I heard a lot of grumbling.  We just have too, too much to do.  Get wood, doctor's visits, put my truck in the shop, tests on Thursday (PET, two MRIs) and the bone marrow biopsy on Friday.  We begin at 7:00 a.m. on Thursday and the last appointment at 5:45 p.m.    Yep, it's gonna be a stressful week.


Back to his appetite.  We had our biker groups Christmas party last night.  There were 15 of us.  I was suppose to make chili and apple dumplings.  After breakfast yesterday morning our kitchen sinks stopped up.  We worked on it all day.  Three bottles of Draino later, we knew it was hopeless.  So, we took two meat/cheese trays and WalMart bakery cupcakes.  Best cupcakes I have eaten in a while.  We had so much food and such a variety that Jim went back for three helpings.  Not a lot of anything, but a little of everything. 


Today I made an apple pie with granny apples and the chili I was suppose to take last night.  He ate two bowls of chili and a piece of pie.  So, I'm hoping the variety of food brought back his taste buds a little.  He told me Friday he really needs to start gaining some weight.  He is wearing his pinky ring on his third finger.  We have discussed that if his body is not getting nourishment, it cannot heal itself and grow they babies.


I see the changes in his body every day.  I know he must see the changes himself when he looks into the mirror.  He is Jim inside and out, but his body is changing.  But!!!!!! He looks better than he did in June when all his illness began. 


I don't know how he handles the stress.  I have found myself of late having difficulties I had not realized existed.  We take his BP a few times a day.  We never check mine.  Until Monday when I felt unusual.  We checked it at 138/86.  I am a true 120/80.  Tuesday it rose as high as 169/94.  I went to the doctor and they made a cardiologist appointment for Wednesday.  Long story/short.  BP meds and a script for an anti-depressant.  Although, the doc didn't want to use that word.  Even though I don't feel stressed, my body is trying to tell me I am. 


I quickly discovered after only one pill for the BP that I can't take them.  I stayed in bed all day Friday because I kept feeling like I was going to pass out.  Even in the shower.  My BP yesterday was normal all day without the pills.  Doctors!!!!!


Jim really babied me all week.  It felt good to have someone waiting on me.  He worked late all week, came home and fixed dinner and fed me in bed.  I may have to retire and lie around all the time... LOL


I was missing him yesterday and thought maybe he was taking a nap.  He fixed bacon, biscuits and scrambled eggs for breakfast.  That's when the sink stopped.  We were cleaning out the frig.  When I began searching I saw smoke out in the dog yard.  He was burning the big pile.  He burned on it about two hours.  He went down today and burned some of the same pile off.  He came up and was sitting the garage rubbing his right shoulder.  He said it was very sore from splitting word yesterday.  I gave him "my look"!  I told him he wasn't well enough to do that stuff.  I truly hope I didn't hurt his feelings because he said he was well enough to do what he wanted.  I looked at him and laughed and said, "Yeah, but you gotta start out slow..."  I'm gonna put heat on it tonight.  I think he learned his lesson.


We are both sleeping very well.  Even with the kids in bed with us.  We are taking turns letting them out in the middle of the night if they have to go.  I am usually kicking him and telling him it's his turn.  :)  They didn't get up at all last night, but I think tonight they will be in the sunroom.  I need to stretch out sometimes and they don't budge. 


Let me apologize for not writing sooner.  Getting out last night and doing a lot of laughing was a big help.  We almost cancelled.  Today we decided to do what we wanted on the spur of the moment.  So, he worked outside and I cooked.  We gave ourselves choices.  Mine was blow leaves, lie around and watch movies, cook or we could go shopping.  I did tow of mine and he did two of his. 




Good night and Love -- Pepper








 

Tradition -- Word for the Day -- Tuesday, November 24, 2015

Tradition --

Definition:  transmission of customs or beliefs from generation to generation, or the fact of being passed on in this way.

Happy Thanksgiving...  Hope you all enjoy valuable time with your family and all traditions. 

Traditions have a way of getting away from us, especially as we grow older.  We yearn for our childhood traditions, but spouses,other families, friends, different living environments and other compromises somehow interfere.  So memories are all that is left.  So we rejoice...

Jim continues with his labs every Monday.  He has chosen an afternoon hour that does not interfere with his work schedule.  He is down 20 lb. from his original weight.  He is at 184.  I suggested to him over the weekend that we go shopping for some smaller dress slacks for him.  He claims he doesn't want to spend the money.  I told him that I felt better when I had lost so much weight and I got something to fit me.  Made me feel better about myself.  Last night as we were eating dinner he said he had thought about what I said and he wants to go shopping for a couple pairs of slacks.  I wish he could have suggested that last weekend!  LOL.... After Thursday the stores are going to be packed. 

His appetite is not really what it has been in the past, but he is eating a lot more than he was last month or the month before.  I am afraid to fix too much at one time (a meat and two veggies), so I just fix what I think may entice him (one meat and one veggie).  He has always made fun of me because I feel the need for a colorful veggie plate with one starch, meat and fiber.  My economic teacher would be proud of me.

I have made two batches of fudge in the last week.  I have given much of it away and surprisingly he has not grumbled about that.  A good indicator that his appetite has not returned.  He only ate one piece of my pumpkin pie I made two weeks ago.  I won't tell you who ate the rest (in the middle of the night).

I don't believe the two of us are looking forward to the holidays.  We are not dreading it, but we have come to a bump in the road with being behind at work.  The holidays will just make it more so. If we could just run away for the holidays and be alone, we would be content.  We seriously discussed leaving Thanksgiving morning and heading to Illinois and returning on Saturday... But......

We are thankful that he is not ill over this Thanksgiving holiday.  We both have our hopes up about this appointment with Dr. Z on December 15.  He has been trying to scheduled work around his bone marrow biopsy, MRI and PET this week.  I have to keep reminding him that those tests aren't scheduled until December 10 and 11.  He claims he's just so excited about getting them done.... (Noooooooo, he's not!)

Okay....Back to labs.  I was truly excited last week when he came home with a report of platelets sitting at 130.  Hemoglobin was nice at 10.7.  WBC was 5.5.  CRP was a little up at 7.30, but he told his APN he had the sniffles.  We are increasing his magnesium, potassium and phosphorus.  Maybe for a couple of weeks.

Soooooooo, I said I was 'excited'.... Yesterday his platelets were 103.  Everything else stayed basically the same.  As usual, he was upbeat about his levels, and I hope I didn't dapper his mood when I pointed out his platelets and weight had dropped.  His CRP only came up to 7.5, but so happy it isn't in the higher stages.

I see his energy level staying about the same.  He 'thinks' he wants to get out and work in the yard or burn leaves and then when the time comes, he sits.  I am glad for his resting.  We have been heading upstairs by 8:00 each evening and usually turn the TV off by 9:30.  It is peaceful.  Maybe we have begun a new bedtime tradition. 

He wants me to cook for Thanksgiving, so we are staying home.  His parents are coming over, but that's really the only ones we expect as my family doesn't have tradition anymore.  I miss those days that I could spend with my mother and brothers and my son.  Times when every one was to be at our house or better have a damn good excuse. LOL  I'm sure Jim misses the same things, but for now we enjoy each other and are thankful for what God has given us in the way of his continued good health the last couple of months. 

Enjoy your day...and your traditions.

 

Good Afternoon and Love -- Pepper

 

 

Talisman - Word for the Day -- Monday, November 16, 2015

Talisman \TAL-iss-mun\

 

Definition:   an object held to act as a charm to avert evil and bring good fortune; something producing apparently magical or miraculous effects

 

Wouldn't it be nice to pull out your rabbit's foot (talisman) and just wave it around to get rid of your worries and woes?  Just point it in a direction to rid yourself and your loved ones of illnesses, diseases or whatever ails them?

 

After our doctor's visit last Tuesday, Jim has pretty much done what "he" wants to do.  He is still low of energy, but he is trying to work on that.  With a little help from me.  LOL

 

I worked in the back yard all day Friday with blowing and burning leaves.  The piles were pretty huge, but I was afraid if I left them he would come home and fire them up or the rain would come earlier than I expected.  At one point I had to soak two trees down with water as they were smoking a little. 

 

He did make breakfast for me on Saturday.  He then headed to the recliner for about two hours.  During that time I headed to the dog yard and finished up my blowing.  The piles were unbelievably huge.  I collected the necessary tools (rakes, lighter, water hose), took them all to the dog yard and headed to the house.  I woke him up and told him he really needed to move around and he could do that by coming down and holding the water hose. 

 

We got all the leaves and limbs burned down there.  The wind wasn't blowing any, so that relieved me that he may be sucking in the smoke.  He trimmed a few limbs off the back fence from a fallen tree.  He tried to do a little raking, but the fire was just too hot.  So he sat and watched while smoking one of those cigars..  :)

 

We were able to go to dinner with our biker friends.  Wasn't like going out of town for the weekend with them, but we enjoyed it.  Didn't get to sit and have a quiet conversation with a few, but we did get some noteworthy hugs.  Jim and I had a few margaritas and I think we may have copped a buzz.  It's been so long since we drank.  We were home by 7:00 p.m. and to bed by 7:30 p.m.  Now, that was some partying for us!!!

 

His BP has been staying above normal for him.  He has labs today at 3:00 p.m.  I will be curious if he is holding his own on fluids, blood and other necessary counts.  He seems a bit pale, but that may be because he has no hair right now.  Just a few little eyebrows and that's it.  He hasn't shaved in a week. 

 

He is concerned about his port.  It looks a little bruised around the disk area.  He has had the one little scab, which he thought was where one side of the port had been accessed.  It is actually one spot that was irritated when two nurses scrubbed and cleaned the area too well.  We aren't complaining, but it was irritated. I looked it over last evening and it looks very good.  Although it looks like it might be bruised, it isn't. 

 

The port needles are curved at the very tip end.  They hook into the holes.  Sometimes if a nurse is not too familiar with a port needle it can cause a little irritation or bruising.  I believe all the post transplant nurses are well educated on the needle insert, but a couple of times on Day 8 and 9 we had some trainees.  He may have a little blood collection inside the port, but it didn't cause any stoppage. 

 

We have an MM couple going through some rough times right now.  He needs back surgery, but surgery cannot be done until his platelets are 75.  They were at 39 on Saturday after two units.  I saw them at a diner in August after Jim got out of the hospital.  I saw his port hanging out of the arm of his shirt.  I was tempted then to go over and ask, "Are you a MM patient?"  As it happened, I ran into them in Infusion the very next day.  Their names are Bert and Donna.  They had to move here from their home.  We are so fortunate.

 

As you can tell, my writings aren't as full-filled as when we were seeking his levels to come up.  All I have to write about now is how his appetite is coming up, but not back to his norm.  His taste buds haven't come around full circle, yet.  However, we did stuff ourselves at Chuy's on Saturday.  It was very good food.  May be why we didn't eat too much yesterday. 

 

I'll keep you posted on his labs for today.  I'm get the talisman out!!!

 

Good Afternoon and Love -- Pepper

 

 

 

 

 

 

 

 

Umami - Word for the Day -- Tuesday, November 10, 2015

Umami   \oo-MAH-mee\  

Definition:  noun   -  a taste sensation that is meaty or savory and is produced by several amino acids and nucleotides (such as glutamate and aspartate)

Here we go!!!! Day 19!!!  Yes, Sir!  We are 19 days out from transplant.  We had our visit with Dr. Z today.  But, a few other things first... LOL  Found out Dr. Z doesn't have a secretary... Hmmmmmm.... Should I or Shouldn't I?

I stopped by the snack bar and got us a StarBuck's carmel marciatto.  Kinda our tradition deal now.  That's the only time we ever have them.  I saw Jim in the parking deck as he was circling like a buzzard looking for a space.  I told him I'd meet him upstairs.  As I got all my stuff and arrived at the check in desk, he was still there talking to 'his girls'...  One of them told me he was quite popular.  As he was awaiting me, Dr. Ricco approached him from behind and told him all his tests came back looking good.  No infection in or around his port.  Nothing...  Well, we kinda knew that.  We've been telling them for weeks that two nurses were "too" clean and scrubbed his skin around the port so good that it blistered him (sunburn)...

Then, as I was standing there, here comes that good looking Dr. Ricco again.  He shook hands with me and told me Jim was doing excellent.  I said, "He's a super man, isn't he?"  He said he was, but that I was also the reason he did so well.  Okay, my head is about the size of a basketball now!

Our appointment was for 10:30 and we were back in the office and talking to Dr. Z by 10:30... He was so happy to see us and that labs and all reports were good.  He waits for me to give him our detailed medication list.  It's like he waits for me.  He and I talk more than he and the patient.  I also gave him personal update on family ages and stuff.  He always dictates that Jim has two step children...  I corrected that today.  (He has one child --- LOL... I'm kidding... I gave him the right info).  Yep... maybe I should apply for that secretarial position. 

Okay, so now I'm going to wander off track and tell you about his labs.  We are still doing occasional magnesium, potassium and phosphorous.  But, I told you that yesterday...  His platelets LAST Tuesday were 24.... YESTERDAY (are you ready for this or do you need to sit down?)... Okay, I'll wait until you are seated.

Dr. Z questioned me about the Bactrim on my medication list.  That is an antibiotic/bacterial med on Monday, Wednesday and Friday.  Sooooo, I can update our final med sheet to be a more regular schedule.  I told him Dr. Ricco took him off all antibiotics and wanted to keep him on this one to stop anything before it happened for three months.  He laughs and shakes his head and puts it down on his list. 

Soooo, labs every Monday and then we do the bone marrow biopsy, MRI on December 10-11.  Then we will probably see Dr. Z again on Thursday, December 17.  That is usually how it works for us. 

He asked Jim about diarrhea. -- None.  Then about appetite -- Coming back gradually.   He doesn't have that umami, yet.  (LOL)  Then, fever -- None.  And, about blisters and mouth sores -- Never.  Soooo, Dr. Z shakes his head like ... Huh??...  He then tells us that this treatment usually puts people in the hospital for a month....  We have heard that already, but I'm glad we didn't hear it before the treatment... It would have driven us nuts!!!!

As he was closing the door we thanked him..... Then he says, "No, thank you... You two did all the work!"....  I love UAMS...

He left his cell phone in the room and when the head nurse came in we both decided we would do selfies of the three of us on it.  She gave it to me and I discovered he had a pass code... Dang!  When she took it to him she told him what we were going to do.  He laughed and said we could take his calls while we were at it...

Okay.... Soooooo, here we go.... Platelets on November 2 -- 24.... Platelets YESTERDAY (one week later)  -- 104!!!! 

He's travelling to Shreveport in the morning and has to be there at 5:00 a.m.  So, that means he has to depart the house at midnight tonight.  He doesn't spend the night anywhere...  I told him I could take a day of vacation and drive him... He doesn't let non employees in his vehicle...  (Note to Self:  Stop your control freak status.... Let him do what he wants.... When he wants....)

Good Afternoon and Love -- Pepper

ChemoSabe - Word for the Day --Monday, November 9, 2015

ChemoSabe

Definition: 


Ke-mo sah-bee (/ˌkiːmoʊˈsɑːbiː/; often spelled kemo sabe or kemosabe) is the term of endearment and catchphrase used by the intrepid and ever-faithful fictional Native American sidekick Tonto, in the very successful American radio and television program The Lone Ranger.


Ultimately derived from gimoozaabi, an Ojibwe and Potawatomi word that may mean "he/she looks out in secret",^[1] it is sometimes translated as "trusty scout" or "faithful friend".^[2][3] Its use has become so widespread that it was entered into Webster's New Millennium Dictionary in 2002.


We came across ChemoSabe at our first visit with Dr. Barlogie in 2008.  Tommy claims it was his idea, but I remember it being mine.  Jim always smiles real big when he tells someone the favorite part of the definition -- "ever-faithful friend."  And, we have a Tonto in this story, too. 




I apologize for not writing for so long, but I have been enjoying his increased appetite, a little more energy and his continued good humor.  I've been selfish.  We have a follow-up appointment with Dr. Z tomorrow morning.  I think we both know the routine pretty much.  He will just look over all the last few weeks labs, asks a lot of questions.  Give us a schedule for his lab check ups.  Give us a schedule for next testing.  They are all very thorough.  This visit will at least put us on a more regular medication regiment.  Right now it is an expected change each day.  We went to the drug store three nights in a row last week.


He has lost a little weight in a week.  He is back to 189.  I'm gonna have to watch for that.  He looks as little pale, but his BP is staying up well and I haven't given him a BP pill in a few days.  He is sleeping a little restless, but when he gets up he drinks a few sips of water.  That is good, I think.




I'm not having to hound him about liquids, it seems.  His appetite started coming back up on Friday.  I fixed a pot of Navy beans and a pan of iron skillet cornbread.  He ate a big bowl of beans and two pieces of cornbread.  He started on a glass of cornbread and butter milk he had been craving for days; he only got half way through that.  I told him his eyes were bigger than his stomach. 


He worked until 5:30 every afternoon last week. He started right out this morning.  I am ironing his clothes.  I'm going to work him back into doing it himself.  I'm thinking that would get his blood circulating pretty good before going to work.  He doesn't eat breakfast unless I fix it and tell him about it.  I ate cereal this morning.... so he didn't eat.  But, he did say he got himself an order of chicken fries and a chocolate shake from BK.  He loves their shakes.


He's been stepping out more with his little cigars in the garage.  I've gone out there a few times and sat with him.  When he doesn't go to the garage or the deck, I know he isn't feeling up to par.  We're going to start sitting on the deck and burning some small sticks of wood in our burner.  I've been taking a blanket out for him, but he claims he doesn't need it.


His labs are looking excellent for this time frame.  (I think)...  His WBC have dropped to 4.6.  Two points from last week, but his says the nurse indicates it's okay.  His hemoglobin is 10.1.  Remember, if it's 8.0 or below they give him a unit.  We are working daily on potassium, magnesium and phosphorus.  It is a daily thing.  So I have been giving him some daily.


You're gonna flip out on the next ones -- Platelets are up to 104.  Remember -- a few weeks ago they were 20!!!  CRAP is -5... MINUS FIVE!




He is really wanting his energy to come back up.  But when he thinks about it, he says he feels a lot better than he did beginning in June.  He needs a little energy to keep up his humor and spirit.  We both know that's going to be a while ahead.  He mentioned again he wanted to burn leaves.  He confessed he thought about lighting a pile yesterday.  I gave him that little speech about his lungs being tender from the chemo.. 


I charmed him with two kinds of ice cream this evening.  He ate a late lunch so we had Triskets and sharp cheese for dinner.  Fixed him Gelato (strawberry/chocolate and carmel vanilla trussel).  I 'poured' carmel syrup on both...


We found out late Friday afternoon (4:30) that he didn't have to do labs on Saturday and Sunday.  He called me from the deck.  Both our brains got into gear about the trip we had to cancel with our group.  We both had a split second thought about reserving our rooms again and leaving as soon as he got home.  My thought lasted a little bit longer than his.  He is the thinker of the family.


After he told me we could leave first thing Saturday, after he ran up to get his needle pulled from his port, came back home, pick my truck up to wash it..... Well, I had enough... My plan was to go together to the clinic... I would drop him off and run to work to print bulleting (20 min), pick him up and leave from there because our luggage would be in the truck.  Mine idea was better.. Right?  I kept seeing our departure time extending out to past noon.


I had all my stuff packed as we planned.  Of course he didn't like my plan and I didn't like his.  So, I threw a hissy fit.  (Pity party)....  We didn't go to bed happy, but we were talking...  But, we didn't discuss it anymore after I told him it didn't matter what time we left.  I made reservations for Saturday and if we left at 4:00 p.m., we could still spend a little time with our friends. 


Neither one of us slept well.  I slept half the night on the couch downstairs.  I got up around 7:00 and piddled.  When he got up we mutually agreed on a few things.  I told him I thought we needed to just stay home and rest.  No time schedule.  we had been on a strict schedule the last few months and even more tighter the last three weeks.  So, we ended up lying on the bed until around 11:00.  He didn't get his needle pulled because they were going to pull it today anyway.  Went to my office for about 20 min.  Did some shopping around at a new western store and didn't buy anything.  Ate at Applebys and home early to bed at 7:00 p.m.  Didn't get out of bed until noon yesterday!


So, you see... I was selfish this weekend.  It was all good.  We are both still dealing with post transplant side effects!  ONWARD!


Good Night and Love -- Pepper

Calm - Word for the Day - Friday, November 6, 2015

Calm

Definition: 
- a quiet and peaceful state or condition

- a peaceful mental or emotional state

Day 15+  Can't believe it's been two weeks and one day since the stem cell transplant.  It's been a roller coaster and we have many more days ahead, but we have made it through the desert... 

Jim is looking so good.  He has a way to go on his energy, but he gets better every day.  He is enjoying work this week and already has a full week scheduled for next.  When he drives up the driveway I see he is exhausted, but when he gets out of his vehicle, his energy seems renewed at just being home. He is calm. 

He is only on one antibiotic now and it is pill form.  He takes it three times a week on Monday, Wednesday and Friday.  He will be on it for three months.  His daily pill slots have less and less in them each day.  Especially after going to the drug store every day this week to get something new. 

I took off work yesterday.  I drove halfway down the drive after dressing for it...  Then I backed right back into the garage and closed the door.  I think my mental state needed a break as my physical being was losing grip.  Today, my day off, I have been catching up on some things on my laptop.  I will go in Saturday to print then off.  One day off and it makes me a month behind. LOL  I did get payroll taxes done this week, but I still have month end close, Sunday school reports, finalizing editing on budgets, entering contributions for last week....and the list goes on.  But, I enjoy it.  Just as Jim enjoys his...

His labs are increasing well, but his WBC, as they prepared us, has been going up and down.  Not drastically...  Thursday's results -- WBC 7.6 (Wed was 8.32); hemoglobin 9.6 (Wed was 9.2); platelets 52 (Wed was 38); CRP 14.9 (Wed was 22.4). We are happy about these.

His appetite is not good at all.  He feels hungry, but when I put it before him, he takes only a couple of bites.  Can't tell you how much food I have put down the disposal.  When we got home Wednesday we discussed things he was hungry for.  We had some hot pockets and mini pizzas in the freezer.   He say he wanted two hot pockets and one pizza (that's four pieces).  I looked at him while I was in the freezer with that "Hmmmmmm, I don't think so" look.  He looked back and adamantly said, "I'm HUNGRY... I want to eat!". 

I kinda got excited for a minute about that exclamation, but in the back of my mind I knew his eyes were bigger than his stomach. Before I finish this story, I will tell you I did not say to him, "I told you so."

He did eat two drumsticks before the pizzas were ready.  For that I am thankful.  Fixed his glass of L-Glutamine and he drank it.  I brought the pizzas and pockets in and he took one bite of each and sat them down.  He apologized. 

He took a yogurt to bed with us, but he went to sleep before eating it.  I woke him up after about an hour and told him he really needed to try to eat it.  He did half.  Things just don't have any taste to him.  I told him it would come back soon.  One day when he is massively hungry he will sit down and eat the whole plate.  We have seen that before.

We got the notice today that we see Dr. Zangari on Tuesday.  I'm thinking he will schedule a PET, MRI and bone marrow biopsy.  Maybe it won't be for a month.  Jim needs a break.  AND, get this.... he wouldn't be able to do it next week because he has to be in Shreveport at 5:00 a.m. on Wednesday for a start up.  Then, he has to be back here by Wednesday afternoon at 3:00 p.m. for labs. 

Yesssssssss, I've very worried about this trip.  He would have to leave here at midnight on Tuesday to accomplish this feat.  I offered to take Wednesday off and drive him down... He was absolute about that not happening... So, I'm going to have to remain calm about it and trust that he will do whatever to take care of himself.  Can't keep this good man down!!!

Everyone at the clinic is so amazed with his progress.  They don't fail to tell him that.  Nurses that have taken care of him the last few weeks always stop in at whatever POD he is in and brag on him.  Especially his woman, Edith! 

I'm going to labs with him tomorrow since it's Saturday.  He has changed his clinic to 3:00 p.m. again so he can work all during the days.  I will run by work and print off my reports I did today.  We won't be with our friends on the trip this weekend, but maybe we can do something together, like going out to dinner, to make up for that.  We have a good time together anyway...if we are around others or just alone... Mostly -- alone...

Good Afternoon and Love -- Pepper

Discourage - Word for the Day - Tuesday, November 3, 2015

Discourage --


Definition: 


: to make (someone) less determined, hopeful, or confident
: to make (something) less likely to happen

: to try to make people not want to do (something)

I wasn't going to post today because we are both so very tired.  He has worked the last two days from noon to 5:00 p.m.  I have been taking him lunch so he can take his meds. We both have been experiencing the post transplant blues again this week.  We both have been a little discouraged. 


He is more than ready to get back to his normal routine.  He is ready to be able to do little things around the house.  He keeps mentioning burning the leaves and I keep shaking my head, "No".  I'm ready to have him back to helping me with the dishes, folding clothes and picking up my shoes when I leave them all over the house. 


We had to cancel our weekend trip with our biker group.  Our yearly holiday get together.  We were going to leave Friday and come back Sunday.  Our APN told us on Saturday she felt his levels would be back up enough that we could make it.  We got our hopes up.  Yesterday I sent Dr. Z's nurse an email to seek out approval.  I knew what the answer was, but I guess I had to see it in writing.  Her response is below: 


"Dear Kathy.   I hate to disappoint you, but I don’t think that it would be a good idea for Jim to skip any infusion 4 visits.  He has begun the recovery stage and this time is critical.   He is not even two weeks out from his transplant  yet and is still very susceptible to infections. He needs to be monitored daily until he is consistently exhibiting increased blood counts and we know he is stable.   It is best for him to continue with the daily monitoring.  He also shouldn’t be riding any motorcycles for a while.  He has had a long and difficult course and has come far since his relapse.  I would hate to see anything go wrong or lose ground because of hastiness. Please understand, I want to keep him on track, to have him to  continue to make progress, get rest and conserve his energy for now,  and not take any risks with his recovery."


Before he got home from work yesterday I headed to WalMart to get him juice and yogurt.  Yogurt so he could rebuild some good bacteria.  My phone beeped as I was parking, indicating I had an email.  So, I read it before I got out of the truck.  I have to say I had a small mental break down.  It really wasn't a pity party and I don't think I was feeling sorry for myself.  I already knew her answer before I saw it.


When I got home he was already here.  He is always so up beat when I walk in the door.  He greets me like we haven't seen each other in days.  I miss our hugs, little kisses and holding hands.  He holds my hand in bed.  We haven't done that in so long because of having the feeling of germs...  Dammit!


I took the bags into the kitchen and he followed me.  He saw my face and asked me what was wrong..  I started boo hooing again.  I said, "I guess I'm feeling sorry for myself."  He put his arms around me without hesitation and said, "Baby, I do that enough for both of us.  What's wrong."  I showed him the email.  I hate dropping my problems on him when his shoulders are so heavy with his own worries.


As he finished reading it he looked at me and tells me he feels good enough that we are going anyway.  That made me cry more.  I then realized it wasn't really about me feeling sorry for myself.  I was discouraged about how our lives have changed so much the last few years.  We can't plan anything because of treatments, labs, doctor's appointment and testing.  It's no one's fault.  I believe at times I just can't be the strong person for him that I need to be.  When I cry I feel I'm letting him down. 


Today the infectious disease doctor came to see him.  His port is still red and yesterday it had some crusty substance on it.  He told Jim he would be back in a few.  So, Jim called me at work at 9:30 a.m.  I could tell something was bothering him and then he asked me if I could come up to see Dr. Ricco.  I left immediately.  I missed the doctor, but I got the scoop from the nurse.


A blood culture was done today and he is to have an ultrasound on his port on Monday.  It is to make certain there are no blisters or anything inside his chest around the port.  They are not very fearful, but this is just a precaution.


His phosphorous is very low and he has been taking the powder in juice three times a day.  Not helping... So, he brought home an infuser of it today.  It is a five hour drip.  I also had to piggy back cefepime to it.  I'm never done a double.  Especially when the cefepime is a 30 minute drip and I disconnect it before the phosphorous.  Scary!!!!


All we have heard the last three days is BEAM and how massive it is.  He told me Dr. Ricco really bragged on how good he was doing and how good he looked.  He is the one that put him in the hospital in July when he had infection.  Everyone just keeps telling him how unbelievably well he is doing.  A nurse told me yesterday that most BEAM  patients have to be hospitalized.  They just can't take it...  I don't know of any of the others that have taken it.


He is still having the 'squirts'.  He is up 3-4 times a night.  I have been sleeping in the spare room on the day bed.  My back is just about to cave in.  We are both exhausted when the alarm goes off. He is more so because he is the one getting up numerous times. He asked me today in clinic if I could change the sheets tonight as he soiled them.  That just broke my heart.  Dr. Ricco told him today the Melphalan causes that and it may be months before it is out of his system... Penny's is having a bedding sale!  LOL


Before we left clinic today he shed a few tears, too.  Tears of discouragement because he wanted to be at work sooner.  I looked at the time.  He was lying back in the recliner in his POD, with tears just rolling down his cheeks.  I grabbed his ankles and shook him and said, "Jim!!!! It's only 10:00... You have more than the whole day!" 


As we went our separate ways at the elevators to our vehicles in the parking garage, he took a chance and kissed me.  The elevator doors opened and an older couple heading to Infusion came out.  The man yelled out at us -- "Hey, is this the floor where they give our kisses?"  I don't know these folks, but I gave him a hug.... I'm NOT a hugger.  We all laughed. 


I stopped by Wendy's on my way back to work and got him a single burger with fries and a Frosty.  He wasn't there when I dropped it off.  He told me tonight that when he got there he asked Tonto about it and she said, "You gotta eat"....  He still hasn't told them what has been happening the last two weeks.  I've been so tempted because they take such good care of him.


Counts are coming up!!!  Crap is going down....  Antibiotics in the port are stopping tomorrow.  It will be pill form then.  They are going to let his port rest.  Dr. Ricco is talking to him at 10:00 tomorrow about the results of his blood culture today... Poppy asked me if I could be there......  Hellloooooooooo....


Day 12!!!!   ONWARD!!!


Good Night and Love -- Pepper

Microburst - Word for the Day -- Sunday, November, 1, 2015

Microburst

Definition - noun: 

a violent short-lived localized downdraft that creates extreme wind shears at low altitudes and is usually associated with thunderstorms ARE YOU READY?????  Here we go!!! Didn't post yesterday.  I was too tired and funky feeling.... So, as was he.  I believe much of his was being anxious to get out of the funk and mask stage.  We haven't been very patient...  We need to pray about that..  We are both stretched beyond, but we know there are others with more troubles with this disease.  I spoke with more of them today... I have gone to bed each night for the last two weeks and find my eyes leaking on my pillow case.  Tears of sadness for Bill Goodness' family.  Seems like years ago I met Kim in ICU and not two weeks since she lost her husband.  Then, my tears are also for Poppy.  I turned over to him Sunday night and said, "I want you here for Christmas."  He said the same.  Then I leave for the spare room so he won't hear me sniffing. I was hoping he could read between the lines that he needed to help me take care of him.  ONWARD!!!  Enough mushy stuff. We had a weight lifted when we came home yesterday and found that big (ass) tree that had fallen, was cut up and stacked.  Tommy and Easton came by and worked on it.  In the rain.  He is our jewel in some of our darkness moments and he doesn't even realize it. I fixed two pumpkin pies yesterday to possibly entice Poppy's appetite, but he only ate a 1/3 piece.  He didn't intake much liquid either.  I just don't even mention it anymore....  He knows the rules. I'll quit rambling because I know you're anxiously awaiting the labs...  Here's the bad news:      Potassium, magnesium and phosphorus is still low.  Instead of doing the IV today we are going back to pills.  We already had the mag and pot...  The drug store had to search the city for phosphorus beginning at noon.  Finally at 4:00 they called and had found 100 packets..  I only needed a few for the next couple of days so now I have 30.  I drove up there with my jammies on and was sure hoping I wouldn't have to go in...  I went to the drive through.. Whew      Had the two antibiotics in IV today, but was advised we didn't have to bring the cefepime home for tonight's infuser.  Oh, what a weight lifted.  I could kick back and not worry about timing.  BUT, at 4:11 I get a call from Infusion... We should have brought home cefepime.       Yesterday he changed his appointment times to 3:00 p.m. thinking he would only be doing labs.  BUT, the two antibiotics he gets in the morning have to be at the same time each day...  Back to 8:30 a.m. every morning and bringing one home for 6:30 p.m.  He's NOT happy... He's going to work tomorrow and this just delays it...  He's blaming them.... I finally gave him "my look" and told him it was basically his fault for changing his times to 3:00 p.m.  He should be glad they are checking things after he leaves (checking it four hours after we left!)...    ONWARD!!!  Don't get me started about work being more important than health... Sooooo, I've made you wait long enough.  I'll give you stats from yesterday.  WBC - 1.4 (boo), platelets - 21, hemoglobin - 8.3, CRP (crap) - 93.50 We had RN Cathy yesterday and today.  Keep in mind the girls we have had the last two weeks ONLY work on POST transplant patients.  His regular nurses are maintenance that he was seeing every week for years.  After many conversations with Cathy and her telling us we sure looked familiar, we finally discovered she was a major part of Poppy's first transplant in 2008.  She worked in the transplant center that was then called 7C in the old, old part of UAMS.  We had a lot more memories to share about that year and she remembered them all..... We waited about 45 minutes for labs today.  It usually takes an hour.  When she got his two antibiotics started she began looking at her computer.  Her eyes were kinda bugged out.  Then she says, "Oh My Lord!"  Poppy's and my heart just fell.  I'm thinking infection has gone up.  This response last time from a nurse ended us up in ICU in July.  I had a microburst!  She kept standing there just glaring at the computer like she was in shock.  Then she says.... "WBC - 6.3!"  I looked at her and felt like getting up to slap her.  I told her she must have logged into the wrong patient.  So I got up and went to the computer myself and looked at the patient account number and his name.  Then I looked down at the stats myself ---- WBC 6.3 (yesterday 1.4), platelets 21 (yesterday 21), hemoglobin 8.1 (yesterday 8.3), crap 54.20 (yesterday 93.50).  He is NOT neutrapenic!!!!  But, he did get blood today.  Which isn't bad. I have to be honest, this was like hearing the word Remission...  I had to sit down, my legs were so weak.  I thought she was going to do the same.  Poppy was already sitting....in the recliner getting the drips.  After the shock passed through us, I looked over at him and tears were streaming down his face.  Well, actually flooding down his cheeks.  I went to him and realized I really couldn't hug him because I was afraid he might get sick again.  Then, being me, I was afraid if I hugged him I would break down.  Of course, we can't have that. Can't show my weaknesses.... So, I told him I'd go look for Kleenex.  Wasn't that romantic of me? Cathy had shared with us earlier that the alcohol chemo was very harsh... We knew that... Then she says that's why it's in a glass container...  that's how massive it is.  She also discussed that he is one tough man to take on all the chemo he has had the last month.  I was pretty frank when I mentioned I didn't think any new patients could handle anything that tough.  I haven't seen anyone but him get it in Infusion.  She looked at me and said, "There's no way a new patient could handle it!" The little nurse that gave him the alcohol chemo and two others two weeks ago came over to see him when she saw me with the Kleenex... She touched his leg and said, "Boy, those better be tears of joy!"  He cried more.  If you haven't been in this place, where he is right now, you just can't imagine how overwhelming it can be.  We are blessed!  God is good.... ALL the time. As the day progressed, I spoke with Ms. Brown from Atlanta.  The one that told me last week she was 'fighting a battle' and I explained my journey theory.  Then, I spoke with a younger girl named Rhonda.  Her story and journey is far more in depth than ours.  I told her we were in Day 10.. I asked her what was her day. She told me she was in Day 88. Rhonda had a stem cell transplant 88 days ago.  She had to have a donor.  After her transplant she has to do labs EVERY day for 100 days!  Here we are being impatient about two weeks....with another week to go....  Shame on us!!! She and her husband were talking about the dinner they had last evening.  Baked roaster!!!!  Not a hen......  He fixed it like a turkey, but the first 20 minutes it was with the breast down.  He explained the roaster have their privates taken out at a young age and then boasted up on enhancers to make them plump.  Our nurse, Cathy yelled out this question, ''DO ROASTERS HAVE NUTS?"  It's been a good weekend and a great Day 10+ Good Night and Love -- Pepper

 

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