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