Chemo Sabe

My photo
Benton, AR, United States
Diagnosed with Multiple Myeloma-- May 2008

Saturday, June 27, 2009

Recuperating -- Word for the Day -- Saturday, June 27, 2008

Recuperating

1: to get back : regain
2: to bring back into use or currency : revive
3: to regain a former state or condition ; especially : to recover health or strength

CRP today was 65. I am still not happy with it, but it is coming down. We are in the recuperating stage.

ChemoSabe didn't let me go with him to UAMS yesterday or today. He believes the sitting is too hard on me. Plus he went into the office for a little while yesterday. I guess I could catch up on house cleaning and such. I still have not sat down to pay bills. I am telling myself I will do that tomorrow evening when he does his computer work. No, I am not behind or late.

He got up at 6:30 to get ready to make his trip for his IV. When he is resting he doesn't cough as much. He has slept well the last two nights as I have been giving him my itch medication (Hydroxzine). It is helping his rash caused from the antibiotics.

I waited for him to leave this morning before I got out of bed. I knew if I got up he would think I was up to something. I didn't even comb my hair. I rushed out and soaked a bandanna with ice cold water, wrapped it around my neck and headed to the storage building for the mower. I only did the boulevard and front yard. I had weedeated excessively last week so the edges and trees weren't too shabby. It took me 45 minutes and a tank of gas. I had on a tank top and shorts. I was soaked by the time I got back to the garage. It was only 10:00 and already 93 deg.

I got a bottled water out of our little frig in the garage and sat. I recuperated and then this bottle of insect killer kept staring me in the face. I have been a little ticked off about a mole in the front that pushed up my metal shafted landscaping lights along the driveway. So, I pulled out the hose, connected the chemical and away I went. The day just got hotter.

My face turns blood red when I get out in the heat. So, I sat again and cooled off. It usually takes about 4-5 hours for the redness to go away and I really wanted to get my nails done. I had not had my two allotted cups of coffee and the pot was still on so I had them. I guess the hot liquid did the trick. My face was back to normal in about an hour. I felt safe to take a shower then. Maybe I should send that in to Heloise. Drink hot to cool off. Big E says spraying him with cold water makes him hot... He is so funny.

ChemoSabe caught up with me at W-M... He was on his way home. You are not going to believe what he wanted to do... RIDE THE BIKES. I just couldn't see it. I came on home and we had two movies left to watch. He mentioned a nap, so I felt comfortable we wouldn't be riding. I fixed us a sandwich and we started a movie.

Our new neighbor came over for about two hours. We enjoyed it. She is originally from El Salvador. I love to listen to her. ChemoSabe napped off and on while she was here.

His face is still red with rash and he looks pewny, but his attitude is better. After the movie he was craving fruit so we headed to Kroger. Ran into some of our old church buddies.

He was given some more meds for coughing. They look like Vitamin E pills. Yellow/gold jelly-like. They have helped tremendously. At least when he gets up and moves around now he is not coughing like his insides are about to erupt.

If we can just get the CRP down, I will feel better. That will be when I know he is recuperating. I know it may sound silly, but I have cried a lot the last few nights thinking this would get the best of him. I haven't wanted to really stick my head out of the house, but I needed to get out. Especially when he is at UAMS. If I stay in I will brood and he will be able to see it when he comes home. This week has been similar to my feelings last year when he was diagnosed. I look at him feeling so sick and it crushes me. I can't loose him.

Are you thinking ?????? Talk, talk, talk, talk???? I am just relieved he is so much better. He is eating a lot better, too. He promises to fix me his famous bacon in the morning and bring me breakfast in bed. I can't wait. He is pale and he still looks strained, but he is moving around more. He has cabin fever, even though he is gone a half a way to Infusion every day.

Thank you so much for listening. You have been my strength through it all. Together we will continue learning about Multiple Myeloma, caregivers and sometimes our own diagoses and medication. We WILL make it.

Good evening and Love -- Pepper.

p.s. I got a pedicure, too. I have an American flag on my big toe nails... ChemoSabe flipped over them. Especially since they are hand painted and not a sticker. It made him laugh..... That's all that counts.

Friday, June 26, 2009

Pneumonia -- Word for the Day -- Friday, June 26, 2009

Pneumonia

A disease of the lungs characterized especially by inflammation and consolidation of lung tissue followed by resolution and by fever, chills, cough, and difficulty in breathing and that is caused especially by infection

I wish I could tell you that ChemoSabe is better, but he isn't. His CRP was at 133 on Wednesday and then came down to 50 on Thursday. He has been getting IV antibiotics every day along with Levaquin by mouth at night. I had my hopes up yesterday, but then he called from lab this morning and CRP is up to 73. They left the IV in his arm so they can give him another round of antibiotics tomorrow and Sunday.

He has a rash on his face and I am certain that is from the antibiotics. Infection causes it, too. I have seen this in other patients that stayed at our cancer houses and their end result wasn't good. I am getting worried. It has been a week.

His coughing got a lot better on Wednesday, but now when he gets up to go to the kitchen or bathroom he starts coughing so bad he bends over. It is a crackling, deep down cough. The Infusion center doesn't seem to be worried.

He has been eating good. Although, night before last all he wanted was cheese toast. He has been snacking, as well. I went to W-M today and got some more snacks and he said he has been craving a cook out...(hamburgers) So, we talked about chili dogs for supper. It is just too hot to go in and out from the deck. I will just boil the wieners.

As soon as I got home I fixed him a bologna/salami sandwich and he ate it like he was starved. I noticed a cereal bowl in the sink so that tells me he ate before I got back. For that I am thankful.

He has been asleep in the recliner since about 1:00 p.m., but he does wake up to talk to me and give me that smile.

He has done so well over the past year. I would hate for something like this to bring him down.

CelGene Corp. called today to advise they are sending his new prescription of Revlimid. That is another sort of chemo by mouth. They have been sending it free. Another one of those $3,000/mo meds. For this, we are blessed. I have been surprised they call us to let us know when it is coming. I told the young lady about him being sick all week and lo and behold, she called him on his cell and told him pneumonia wasn't in the picture... They laughed.

If you remember, in October when my mom was in hospice, these people sent ME a FedEx package and I thought it was more paperwork to fill out. It was a card of encouragement from a young lady that worked with me. She has since been transferred and now the girl that called today is just as considerate.

I have chores I need to do, like pay bills, and I just don't want to. I sit in the den with him and watch him. When he goes upstairs early to bed, then I pack things up and head up with him. I did stop by Hastings today and picked up four movies. I don't much think he will stay awake to watch them, but they are good ones.

The kids have been extra quite today as if they know he is sick. I have not let them in to our part of the house. They have been in the sunroom much of the day because of the heat. I do have a floor fan on the deck for them, but it just blows the heat. We have been putting ice in their bucket.

Well, I just wanted to give you an update. If you want to call you can, but he is generally refusing to talk to anyone. His sis called last night and he said, "Hello, here is ____". (I don't use our real names on here).

Our two little zebra finches had four eggs about two weeks ago and one hatched today. It isn't as big as my fingernail or a milk dud. He did smile and laugh about that... He is so amazed at the tininess of it.

Good evening and Love -- Pepper

Tuesday, June 23, 2009

CRP - CRP - CRP (in other words) Crap, Crap, Crap -- Word for the Day -- Tuesday, June 23,2009

Sorry for the bad mouthing, but that's what happens when you are a caregiver and worried.

If you read the post yesterday, ChemoSabe's CRP was 113 yesterday with 10 being a high range. Today, after the IV antibiotic yesterday, he was given another IV of the same and he waited for his labs. ARE YOU READY!!! If you don't like bad news, close your eyes and scroll down to the next paragraph. His CRP today is 133.....!!!!!

Infusion told him not to worry. He needed to give the antibiotics time to work. BULL CRP!!!

I looked up Staph infection and didn't like what I read. Staph leads to pneumonia, spreading of bacteria in the blood stream and possible organ failure, if not taken care of.

So, Pepper, (remember I'm called that because I can get hot!) emailed our old research nurse and told her what was going on. She emailed me back and she had contacted ChemoSabe's doctor. They decided he needed to get up there asap and be checked by a doctor. Not the one 'on call' in Infusion.

I was very proud of myself when I called him. He wasn't so happy that I interfered. Pepper emerged again! While I had been waiting for my email he had contacted the clinic and they basically told him the same thing. So two people called his doctor. They told him to come back up and his response, you ask?..... He said he had sat up there all morning and he would make plans to see them Wednesday a.m. My Pepper turned to tears.

Okay, enough of my harping. That's not why I am here.

He goes in tomorrow for a CT scan to make certain he does not have pneumonia. They will be doing another nose swab to check the extent of his infection. The kicker is, his blood counts are okay.

Well, he has been resting, he is so exhausted, but I hear him puttering around. I better go before he catches me or there will be Pepper!!! ha

I will keep you posted.

Good evening and Love -- Pepper

p.s. I made our new neighbors a pumpkin pie and took it over... They were overjoyed... That was the good part of my day!

Monday, June 22, 2009

Infection -- CRP -- Word for the Day -- Monday, June 22, 2009

This is an update on yesterday's notes. ChemoSabe ran a high fever last night and had night sweats. From 10:00 p.m. to 1:30 a.m. we had to change his bed clothes three times. I began putting towels over the sheets to keep them dry.

I was totally shocked when he got up at 5:00 a.m. to go to work. He drove himself. He wished he had stayed home. He took himself to the Infusion Center and was there from around noon to 5:00 p.m.

To make a long story short, his CRP is up to 113... 10 is the highest on the chart. He is going back on Levaquin. They had already put him on an antibiotic last week.. He will be on this for seven days. He finished his last round yesterday.

He is getting an iv round of antibiotics before he leaves Infusion today. He is irritable.

I will keep you posted.

Good afternoon and Love -- Pepper (I'm tired of being a doctor)

Sunday, June 21, 2009

CRP - Word for the Day - Sunday, June 21, 2009

CrP (My pronunciation -- crap)

Definition: C-reactive protein is a test that measures the amount of a protein in the blood that signals acute inflammation.

Alternative Names
CRP; High-sensitivity C-reactive protein; hs-CRP

How the test is performed

Blood will be taken from a vein, usually from the inside of your elbow or the back of the hand. The health care provider will clean the area with a germ-killing product (antiseptic). An elastic band may be placed around your arm. The band helps apply pressure and restrict blood flow through the vein. This causes veins below the band to swell with blood.

The health care provider will insert the needle into your vein. Blood collects into an air-tight container or syringe connected to the needle. While the blood is flowing into the container, the band is removed to restore circulation.

Once the blood has been collected, the needle is removed, and the puncture site is covered to stop any bleeding.

At the laboratory, your blood sample is mixed with a liquid called an antiserum, which contains substances that looks for the specific protein.

ChemoSabe missed his Velcade shot on Tuesday as his CRP was up to 26.5. That is incredibly high since normal is <5. He has a low grade infection which is a cyst. He was given an strong antibiotic last Tuesday. He did the shot on Friday, even though his CRP was still at 23.5. He isn't suppose to get them when infection is present.

Friday he developed a racking cough as he did in March which developed into walking pneumonia. We didn't let it stop us. We went to son's yesterday for a cookout. ChemoSabe was quite irritable with a couple of people. I got them off to the side and explained his meds and the mood changes it makes him have.

We had plans to run up to Heber on the bikes. I took mine down to the car wash and he followed on his. He didn't even get off it. That is when I began to notice he really wasn't up to par.

After getting home he rather would take a nap instead of detailing his bike. My second clue. He sat in the recliner for an hour or so, then up to bed. My third sign.

Hacking cough, fever, chills. Loaded him up with NyQuil. He rested well, but with difficulty breathing. I prayed it would not drop to his chest. This morning was better. He was still in bed at 11:00. He did eat some bacon and biscuits and juice. Checked fever at 4:30 -- 101.5. Not high enough to call the client.

Straight back upstairs for bed again. I was cleaning out my sock drawer and he laid right on top of the pile. That's one way to run me out of the bedroom.

I was in the process of making two pumpkin pies and a roast. So, I was up and down stairs all day. He got up around 7:00 and came downstairs sniffing around the pies. Cut him a piece and loved it... Cut another piece and didn't eat any roast.

Back to bed at 9:30 with temp dropping to 99. He is sweating like a water bottle. He is soak n wet. I made him go take a shower with hopes of him feeling better. I didn't think he would make it back upstairs. He is so weak.

I really don't see him going in tomorrow. He has labs on Tuesday.

As I watched him today in his recliner, I could see the difficulty he had with breathing. It reminded me of mom and Sharon. I then realized that it could only take a second for his illness to go in the bad direction. I can't live without him.

The Velcade, Dex and Revlidmid all together makes one's immune system drop. Let's hope this 'head cold' doesn't drop and become something more serious. The days he feels like this are the hardest because all he does is complaint and moan and groan. That is not his nature.

I did get a lot of house work done today. Got all the clothes washed, the dogs bathed, the cages cleaned and the tank scrubbed. I am really for bed, but don't know if I can sleep.

I am glad we didn't get to ride today. It would have been extremely too hot for him.

I had an old, old friend pass away on Thursday. Known him and his family since 1970. Friday was his 58 birthday. He drank himself to death. So sad. Please think of their family. They called him Scooter Bill. I called him Ronnie. He has a twin, Donnie.

I will keep you posted on ChemoSabe's illness.

Don't forget, your test is forthcoming.

Good evening and Love -- Pepper

Wednesday, June 10, 2009

Velcade -- Word for the Day -- Wednesday, June 10, 2009

The Dexamethasone has struck...CheomoSabe, as we speak, is vacuuming the kitchen and dining room. It is 9:45 p.m

It has also struck with the commonly known side effect of hiccups... They have been massive for the last hour. I gave him a hiccup pill about 30 min ago.

AND, get this --- he accidentally skipped his p.m. pills this evening and took the a.m. pills instead. That means he took ten Dex today. I don't see any sleep tonight. He got up at 2:45 a.m. and left at 5:00 a.m.... Been going at it all day.

We did get in the spa this evening at 101 deg. Loved it. Since he runs low blood pressure I didn't let him stay in too long. Fifteen minutes is the max. I believe I may need to turn it down to about 90 deg. for the summer.

I have copied the below for you on the Velcade injections he is getting. I thought it would help you along on his meds... AND, prepare you for any forthcoming tests. Study, study, study.

=====================================================================

For patients with
multiple myeloma
VELCADE was the first medicine in more than 10 years approved by the FDA for the treatment of patients with multiple myeloma. Multiple myeloma is a cancer of plasma cells, a particular type of cell found in the marrow of your bones. Multiple myeloma causes the bone marrow to produce too many abnormal plasma cells.

About 20,000 people are diagnosed with multiple myeloma every year in the United States, making it the second most common type of blood cancer.

====================================================================

I will clue you in on the side effects later.

Good evening and Love -- Pepper

p.s. If any of you want him to clean your house in the next two days... Call me... Maybe we can work out a deal while he is souped up!! ha

Tuesday, June 9, 2009

Mulch -- Word for the Day -- Tuesday, June 9, 2009

Mulch

Definition: a protective covering (as of sawdust, compost, or paper) spread or left on the ground to reduce evaporation, maintain even soil temperature, prevent erosion, control weeds, enrich the soil.

Gosh, I love this word, Mulch... Why? You seemed surprised.

On Saturday, ChemoSabe and I threw 12-1/2 yards of mulch in our flower beds. All the way up to the top of the landscaping bricks, which would be about 5-6 in. deep. I love it because we were able to do it. Well, I was more proud of the fact the ChemoSabe was able to do it and didn't miss a lick. Myself, on the other hand, just about died! ha

We began our day by taking the Tahoe for service and then going for the mulch -- one load at a time. He and I started throwing at 11:00 and worked alone until 1:00 p.m. Around 1:30 p.m. some friends of the son came to help us. We all (four of us) worked until 6:00 p.m. One was G.P. and the other was Tyler (17).

Tyler was the most pleasant young man and he was a hard worker. Had some good ideas on how to get the mulch to the back yard and dump it. I truly enjoyed his helping us.

I fixed a pot of chili in between the mulch runs and we all had our fill and hugged at the end of the day.

Since my last writing about the 'stress'... we have made a bike trip to Eureka Springs with Stretch and Rainman. I noticed while we were there that Stretch had a boo boo on her rear tire. It was so bald in the center I could see the tube, almost, through the cords. Rainman left early that Sunday morning and picked up their trailer at home and hauled her bike back.. Better safe than sorry.

ChemoSabe began his '1st Year Maintenance' today. It is a 28-day process and then it begins again for three months. At which time we will have a doctor's visit. He also began his Dexamethasone (steroid) today. It is five pills a day for four days this week and then the same next week. Look out for the mood swings, mama! He really thinks when he gets that extra boost he will feel like moving mountains around the house. I just dread the day after he comes off them..

We lost our Research Nurse that treated us like babies. We could even call her cell phone after hours and on the weekend and she gave us advise. She has transferred to another part of UAMS.. We hope she decides she made a mistake! ha

Our doctor tells us that ChemoSabe will be extremely tired after the Velcade injections. We will see... Nothing has stopped him, yet, has it? He gets the Velcade twice a week for two weeks and that process is an every 28-day cycle, too.

You guys, listen up!!! Insurance is a joke. If you remember, we had so much trouble last year when we met the annual max in September. It was to start up again in January... Well, it hasn't paid a dime. I finally turned it over to ChemoSabe. He has gotten promises that the insurance company would send letters to our creditors that he is covered... That was about two months ago. Since then, they have given him all kinds of excuses why they are not paying. One, if you can believe it, was he had met his lifetime max of $1,000,000. Yes, that's right -- one million dollars. Let's get real! That's all I have to say. I don't trust myself to go any further.

We have been doing some late Spring cleaning. You would think we are getting the house ready to sell. Hmmmmm, that might not be a bad idea. But, we wouldn't be able to find something for the dogs, birds or us, for that matter. We like being on the hill and being private in a neighorhood.

As we were throwing mulch, we had a visit from our neighbor that called code enforcement on us last year for the tree we had that fell on their two cars. It was a good time to mend. We talked and laughed. Now we wave. That was a time that was bad for us because that was when ChemoSabe fell off the roof. God heals us and our attitudes.

ChemoSabe's labs came back good this morning. They are all sitting very well. His cholesterol, of which we were very concerned, came down drastically. Two weeks ago it was 245 with 199 being a very high factor. Today it was 160. Must be that good cookin mama (Pepper) is doing.

The spa is crystal clear and setting is 101 deg. I feeling the urge to get in... Think I will..

Good evening and Love -- Pepper