Us before Myeloma

Celebrating our 5 year Anniversary a few days early. Wow! We've both changed over the past few years.

Wednesday, May 30, 2012

He's feeling Normal...LOL Day +7

In Stevan's words to Dr. Jennifer Holter this morning, "I don't feel any different than I normally do." He has had arm and back pain and diarrhea from his adrenal gland not working for so long, what he's going through now seems like no big deal. After eating a few bites of his breakfast, he slept several hours this morning. He's still got some pain in his right upper ribs, but it is better than it was.

We are trying to get his diarrhea under control with Imodium every 4 hours, but haven't reigned it in yet. We are keeping his nausea in check with Zofran, Ativan, and Phenergan. We have found if he takes either Zofran or Ativan before he eats, he doesn't get sick. If he's feeling sick to his stomach around bedtime, Phenergan helps and puts him to sleep. So far he has not experienced major Mucositis, which is sores in his mouth. As of this morning he has just a small sore, so his Chlorhexidine Gluconate (Peridex) oral rinse is working. Today he has been drinking a lot of water. I'm guessing he's slightly dehydrated since he's craving water.

Stevan has become very sensitive to the smells around him, to the point his food doesn't smell good. I had to laugh this morning when he said his eggs, pancake, and sausage tasted like it smelled... "well I would hope so" is what I was thinking. He has not had much of an appetite, but has forced himself to eat a little each day. He says everything taste like cardboard. Even the chocolate milkshake I got him tonight tasted like chalk, but he drank about half of it, along with the patti from his hamburger I picked up for his dinner. As you have guessed, we both are tired of the hospital food, so I've been picking up a few things that sounds good to him locally around the hospital.

His counts for today were
White Cell        .2
Red Cell         3.47
Hemoglobin  10.8
Platelets        52
He had a low potassium count last night so they gave him 40 mEq through his IV.

I must say we are are very blessed that he's not experienced severe symptoms so far. They say he will loose his hair, but so far its hanging on. This morning the doctor said she's expecting us to be here another 7 to 10 days. They say his numbers will continue to come down before they go back up. So we will continue to wait.

Tuesday, May 29, 2012

Good Day +6

Yesterday and today has been pretty uneventful all the way around. Other than Stevan having diarrhea yesterday and today he's been pretty good. At midnight last night he had a small fever, 99.2 so it was nothing to be concerned about. Dr. Jennifer Holter stopped by this morning for a quick look at Stevan. She is now on rounds here in the unit, so we will be seeing her daily until Stevan leaves.

Stevan's red headed nurse, Jenni, told him that he was getting the floating nurse tonight. The regular unit nurses are to work the sicker patients and he wasn't that sick... LOL that made him feel good!

Stevan's counts today were:
White cells are now at a low of .1
Red cells         3.50
Hemoglobin  10.6
Platelets          72
Grace, his nurse yesterday told us that they will be closely watching each of these but when his hemoglobin goes below 8, they will give him a blood transfusion. If his platelets go below 10, he will then get platelets. Yesterday I requested my readers to donate blood. It is actually really needed, since outside the Oklahoma Blood Institute has signs up outside their building, stating there is a blood shortage. A nurse told me that it is not normal for the OBI to have those signs up.

The only excitement we have gotten today has been tonight when the thunderstorm came through and the tornado sirens in town sounded. Then the softball size hail fell for a good 10 minutes. The nurses thought we were going to have to go into the hallway, but we didn't. I was glad that I had parked in the parking garage this afternoon. It continues to storm here but I think the worse is over.

I am continue to take care of myself and get out of the hospital. Today I went to lunch with Pam Burnside. She and her husband are the parents of a former coworker of mine from Plano, TX, who took us in last summer while Stevan had his first round of radiation. Wonderful family!

We actually have had many families and individuals help us throughout this rough time. We have neighbors looking out for our animals at home as well as our house. Just checking in with us to see how we are is such a comfort to us. So thank you for all that you do to help and comfort us. You are a blessing to us.

Monday, May 28, 2012

Counts are Down Day +5

Stevan slept most of the afternoon yesterday after getting sick and up-chucking his dinner from the night before. His nurse Elaine gave him an anti-nausea medicine that made him sleepy. His throat is getting sore and they say the mouth sores are soon behind. His ribs are still hurting but they are feeling better.

Stevan's appetite is still down. He forced down some chicken noodle soup last night and ate a few bites of eggs and pancakes this morning. Soon after he started getting sick to his stomach again. His nurse for today, Grace, gave him some more anti-nausea that she says shouldn't knock him out. But he's now sleeping again with out loosing his breakfast, so he's doing good.
Here are his counts for today. As you can see his white cells are almost as low as they can go.
White Cells   .2
Red Cells    3.45
Platelets      112

They are speculating that they may need to give him platelets this evening. With his counts being so low, they think he will begin to run a fever and that tends to eat up his platelets. What will a low platelet count mean? Well that could cause bleeding. The platelets allow the blood to clot to keep from bleeding to death.

Now what can you do to help? There is always a need for blood at hospitals and at the local blood bank. With this being a holiday weekend, there is even a bigger need, due to higher rate of accidents. I'm asking everyone who can, to find a place to donate blood in the next couple of weeks. If you donate with the Oklahoma Blood Institute you can request to donate in the name of Stevan Ray Womack, which will give him a credit to his account. You may need his birth date is 5-9-71. This will replenish what he uses from the blood bank.

They ask that you don't request for your blood to be sent to him. For those of you in Texas, Arkansas or other states, I'm not sure if you can donate in his name but you can try. Just tell them his name and that he's at OU Medical Presbyterian Tower. If not you are at least helping someone who will need it.

Since Stevan is sleeping, I'm headed out this afternoon to spend some time with a friend this afternoon out of the hospital.  Thank you for the continued prayers. I know they are working because Stevan could be going through a lot worse than what he is.

Sunday, May 27, 2012

And We Thought We Were Having A Good Day: Day +3 and 4

It seems to never fail, when I leave the hospital even for a short time, Stevan has drama. Yesterday was going so well. Stevan was still having some rib pain on his right side but with pain meds, he was managing. He had eaten breakfast a little lunch. He seemed to be doing good so I went to catch up with a former co-worker and get our laundry done up. He requested I bring back fried chicken, which he can’t get from the hospital cafeteria. I texted him several times so he would know what I was doing and would soon be back. After I took care of everything, including going to Wal-Mart to pick up another couple of shirts and sweatpants for him, it was after 10:30 PM by the time I got back to the hospital.

He was so excited to get his chicken but after eating he said that it didn’t have any flavor. It tasted like cardboard. He then proceeded to tell me that after I had left they had taken him downstairs to get x-rays of his chest, due to the pain had increased. It got so bad that they had to give him morphine to ease the pain faster. They also gave him some cream to put on his ribs that should help relax the muscles around the ribs. They had taken him off oxygen earlier in the day, but since he was on morphine they put him back on the oxygen. His tongue has turned white. Not sure why. They have given him another mouthwash to help with that.

By the time his red headed nurse, Jenni came in to do his midnight vitals, he was again in a lot of pain and wanted to sleep. She gave him some Benadryl and Morphine and out he went. Throughout the night she gave him more morphine and finally some Oxycodone this morning so it would last longer.

The doctor on call this weekend is Dr Carla Kurkjian. She examined Stevan’s ribs and told us that the x-rays showed nothing was broken and that it was more than likely from the neulasta shot he received on Thursday. She told him to be sure and do his breathing exercises so that he would expand his lungs and prevent pneumonia.

Dr. Khalil, Stevan's hematologist oncologist, stopped by this morning to visit. He asked if Dr. Holter has discussed with us, maintance medicines after the transplant. He agrees that there is not a right or wrong way to proceed, but encouraged us to begin thinking about what we want to do after the transplant is complete and be ready to discuss it with him and Dr. Holter at that time. Stevan is looking forward to not being on any meds after treatment if they are not needed. The Revlimid, makes him shaky and the dex has its own symptoms he has to deal with.

As I began to type this post up, Stevan got sick to his stomach and up came his fried chicken from last night. I called the nurse and she brought him some more anti- nausea medicine. This time it has knocked him out. He should sleep most of this afternoon.

Seeing him like this is heart breaking. I know that he's ok when he picking on me and giving me a hard time. When he's not feeling good he gets really sappy and lets his guard down. Over the last couple of days I've seen him near tears as his chin begins to quiver. He's been quite clingy over the last couple of days, wanting me to hold his hand, scratch his head or arm and rub his belly when it hurts. I will be sitting by his bedside today to make sure he knows he's not alone.
I'm actually enjoying the time to relax, sleep in, watch tons of TV, play on the internet and read. The only thing better would be at home doing all of this. Many have asked when we will get to come home. The doctors have said 10 to 14 days from transplant. That would be around June 7 to 9. Stevan's counts came down drastically last night.
Types of cells in the blood.
White Cells 1.4
Red Cells 3.48
Platelets 149

They said within the next day or two his white cells will drop to under 1 and he will then need blood products, such as platelets. Tomorrow I will let you know what that means and what many of you can do to help us with this.

Thank you for the continued prayers. Apparently we have the worse to go through before it gets better.



Friday, May 25, 2012

It Begins Day +2

I have been giving Stevan some extra attention today. He's not felt good today and was very needy today. I haven't had a lot of time to write since I was either rubbing his back, scratching his head or just being close to him at his bedside most of the day. We finally took a short nap this afternoon, when I had a headache that wouldn't go away.
Jen, Stevan's redheaded nurse. She
was a bit shy hiding behind her mask.
Yesterday afternoon Stevan began to complain about his right upper ribs were hurting. They believe this is from the Neulasta he was given yesterday. During his 4am vitals, his red head nurse, Jen, was a bit concerned with his oxygen level hanging around 88%. She ended up getting him talking and it came up. But then during his 8am and noon vital readings his oxygen continued to be a bit low.

The waves of nauseous began today. Stevan got up this morning not feeling good, but ate a decent breakfast and lunch. Shortly after lunch he got to feeling sick and very groggy, couldn't hold his eyes open. He got to sweating even though the room was cool (68). About that time his nurse Jordon came in and I let her know what was going on. She then put him on oxygen and began to monitor him. Soon after that came the chest x-ray and then more lasix. They are concerned that he still has fluid in his body, possibly in his lungs and/or pressing on his heart that is causing the low oxygen levels. They consider his level to be at risk and they are taking precautions.

Lovenox, a blood thinner was administered this evening in the belly. Stevan was not happy about that. Debby, the daytime supervisor, told him that it was ordered daily to be injected into his stomach... OH how he hates these! They burn! She went slow to try and keep it from burning so much.

Dinner was not successful tonight for Stevan. After he took a shower, he became very nauseous. He ate a few bites of chicken noodle soup and drank some Sprite. He was done. I couldn't even entice him with a plain burrito this evening after going to Taco Bell.

Tomorrow I'm going to catch up with a former colleague for lunch and get our laundry done for another week. So yes I'm going to take some time out for myself and get out of the hospital for a while.

Thursday, May 24, 2012

Still Hanging in There Day +1

I don't whether to be relieved or scared. Stevan is still doing well even though his numbers are still going down. He has not been sick, no diarrhea, and no nausea. This was really an uneventful day for us. He slept, or tried to sleep most of the day. I had a hard time getting him to get up take his daily shower and walk until after 6 tonight. When he did walk he did more than I expected. Yesterday he walked the "track" three times. I told him he should do at least one more than that. He made 10 rounds.

On Monday a stool sample was taken for testing. He tested positive for Vancomycin Resistant Enterococci, VRE for short. This is germs found in the bowel that is resistant to the antibiotic Vancomycin, that is used to treat the infection caused by Enterococci.  They don't know how he got it, but people who are at risk for getting VRE are those who have been in an intensive care unit, are sick with a long-term illness, have been on many different types of antibiotics, have had major surgery or had an organ or bone marrow transplant. This means that he is in isolation to prevent VRE from spreading to other patients. Nurses coming into his room now have to wear gowns and gloves. Visitors are to report to the nurses station for directions on what to do to enter his room now. I was told to wash my hands up to my elbow constantly. I'm to use the alcohol-based hand sanitizer coming and going from his room. The main question we had was "Is he contagious?" Answer, "NO". Its more to protect Stevan than anyone else. VRE is not spread by coughing or sneezing. It can be on your hands, and can get their from your stool or urine. It spreads by touching anything if you do not clean your hands. Hands must be washed for ten seconds or cleaned using an alcohol-based hand cleaner. It really isnt as bad as it sounds.
Stevan making phonecalls tonight.
On to the numbers! When we asked the doctors about Stevan's M-spike results from January's bone marrow biopsy, we discovered he obtained zero. Yeah! So that is why they were pushing for him to do the transplant.  Looking at his blood test results from last Thursday during pre-op and then last nights numbers here are the results.
                      5/17     5/24
White Cells     8.6       3.2
Red Cells       4.05     3.31
Platelets         404      244
Hemoglobin   12.6     10.4

In other medical things to report for the day... Stevan was given Neulasta today, to get his white cell back up to working, even though his numbers are not low yet. This will cause some aches and pains similar to his neupogen shots he had before his harvest. Talking to his evening nurse tonight, she said that it would be about day 7 when his numbers get down to their lowest numbers. She also said that he would be allowed to go home when his ANC, absolute neutrophil counts, is greater than 500 for 3 days. Neutrophils are a type of white blood cell that fights against infection and must be calculated by a formula.  I'll  be asking for this count now.

After posting pictures of Stevan the last couple of days, I've had several people ask why he was so swollen. Last night we discovered he had gained 18 lbs in 24 hours, due to all of the fluids he was getting. Even the nurses were surprised at how much he was holding. I asked the doctors this morning about his bloating. They decided to give him a one time shot of lasix to help flush him out. LOL... he got up every 30 to 45 minutes for 5 hours to relieve himself. He just got weighed tonight and he has lost 10 lbs since last night. The lasix are doing their job.

All is going well which proves the prayers are working. Thank you!

Wednesday, May 23, 2012

Transplant - Day Zero


The magical bag. The red stuff is the stem cells
Now we start counting our days up from today, even though we have already been in the hospital 3 days. Transplant Day is considered to be day zero, his birthday as they call it.
This morning started earlier for Stevan than yesterday. I was able to get him up to eat and shower before the doctors made their rounds at 10am. Yeah, rough huh! Grace is our nurse again today and she gave him his pre-meds; Tylenol, Benadryl, and Hydrocortisone 30 minutes before the transplant. Within 5 minutes of receiving the Benadryl, he was out! He’s apparently very sensitive to it.
They had around 2.6 million cells in three bags. It took about 50 minutes to have all three thawed, verified and dripped through the line. I had been told that the preservative that the cells were in smelled like cream corn. It does. I actually couldn’t smell it at first, but an hour after transplant, I went to open the door to leave the room, I caught a whiff of the smell. It must be coming from Stevan’s pores in his skin. Even five hours later, the smell is even more potent in the room. I’m not sure I will be able to eat cream corn again.
Wearing his other "vacation" shirt, this is what
he's done most of the day.
Our pastor, Brother Mike showed up this afternoon. What a wonderful surprise! He couldn’t stay long, but it was nice to see a familiar face, a long way from home.

Anabel, from Physical Therapy, also came today to give him a list of exercises that he needs to do each day to keep his strength up. He didn’t look that interested in doing them. Matter of fact, this afternoon was the first time I had been able to get him up and out of the room to walk the hall in the unit, all of about 40 yards in length.
We are sitting tight, enjoying the lazy days and watching TV and movies all day… yeah hard time, I know. It’s just another day in the BMT Unit.

I have been working on fixing this site so that you can post comments on each blog. Not sure if I've got it fixed or not. I changed a few things, so let me know. Thanks Pat for pointing that out to me.