Day +8: The Beard is Back!

You won't believe me but Jason is actually trying to smile for this picture.

Today is Wednesday, Day +8. Everything is right on track according to the doctors. Let’s talk about how Jason is currently feeling.

Due to the chemotherapy, Jason’s white cell count is down to .1. This means Jason is completely susceptible to any sickness. Like a newborn baby, he could contract any sickness or sniffle. We will not have any guests for a little while for this reason and for others. So far, Jason has done well and has no infection! Woo Hoo!

Jason’s headache hasn’t left in a few days and it keeps him in bed most of the time. It turns out that his Tacrolimus level, despite being lowered, is still too high. As we discussed previously, Tacroliumus is a drug Jason receives but it can make him shake or cause severe headaches if the dosage is too high. They are giving him an entire day off of the drug and then lowering the medication again. Hopefully this will get rid of this obnoxious headache! The past few days he has had very little shaking but he has required more Magnesium. Magnesium levels can decrease when Tacrolimus.

Also, Jason’s mouth has become very raw. Fortunately, the headache pain relievers have been able to numb most of the pain in his mouth. It looks terrible but there are no active bleeds. He is being transfused with 2 units of washed platelets twice per day. His platelet count is still low but we are hoping that the platelets they give him will prevent any bleeding. This hasn’t been perfect and he needs to be careful not to eat sharp, dry foods. He has been slowly eating some French toast in the morning, and then enjoying chocolate shakes as the day continues.

Despite another day of feeling unwell, doctors say he is about a week or less away from beginning to climb out of this pit. I am looking forward to him feeling better, acquiring some white blood cells, and producing platelets. Continue to pray for this. We are so thankful for your prayers and we know God is helping us.

Some fun news: The gift I bought for Jason arrived today. It was a little emotional for him to watch his beard hairs fall onto his bed, and to get his head shaved again. His hair is becoming less and less so I ordered him… a bearded hat! Jason loved it the second he opened it and he has been wearing the hat ever since. The one nurse who has seen him has been laughing about it. Jason says it actually does make him feel better. Today we will go on a walk in the hallway so he can show it off.

Sleeping in his new hat. Jason says it makes him feel so much better.

It’s What’s on the Inside: Day +7

Today is the thirteenth day at the hospital, the 9^th day after chemotherapy, and the 7^th day after the transplant.

As of this morning Jason has another headache and no one can really figure this one out. He is taking Dilaudid again to relieve his pain but I think it has a side effect that Jason doesn’t seem to notice. After he takes the drug, he starts scratching his face, neck and back. With low platelets he needs to be careful because scratching has led to large blood spots under his skin. They are now on his face, chest, shoulders and back. Without platelets these spots are not healing. And if there are any bacteria under his fingernails he needs to avoid scratching his skin to prevent the possibility of an infection; chemotherapy has taken away most of his immune system’s fighting chance to destroy an infection.

And the hair loss has begun. Jason’s beard started falling out in clumps last night, and he can pull out chunks of his hair this morning. Though, he pulled on some leg hairs and those were not ready to budge. He let out a high-pitched, “Youch!” This made me laugh.

I bought him a gift a few days ago that will hopefully arrive in the mail soon. I cannot wait to show everyone. I am pretty proud that I thought of it and I know he is going to love it. Plus, he will be the only person he knows to own one. Hopefully he will let me take his picture with it when it arrives. I have a feeling a lot of chemotherapy patients will be getting them in the future. No guesses, please. I don’t want him to find out about it and I don’t want others to get it for him before me… It is my gift to my husband.

This morning Jason doesn’t feel too terrible. But he is far from well, and neither of us were able to sleep last night.

Today he is going to shave his head again and shower. I am going to try to work using the tiny bit of energy I stored after only two hours of sleep. While I am here I want to be able to keep my current job and still take care of my husband. It is hard to work with interruptions every half hour that last between 5 and 20 minutes so taking care of Jason will be my priority.  

Easier Said than Done: Day 6

If you were to meet with doctors about a bone marrow transplant they would give you a plethora of information. Some of that information I will actually share, word for word, from the bone marrow transplant guidebook (I read it three times before admission. Yes, I am one of those people).

Today we are experiencing one of the many days doctors warned us about. Most of the transplant patients have days in a row where they feel “blah.” Today it’s as if Jason’s whole body has the flu. No shakes, no chills, just that feeling like you are sick, really sick. Fortunately, Jason hasn’t had too much nausea and no vomiting today. I am hoping he can rest as much as possible over the course of the next few days until his body begins to climb out of the pit.

Unfortunately, the insides of his cheeks have become raw and the first layer of the skin inside his mouth has sloughed off. This is not unexpected. Some patients will get sores inside their mouths. The discomfort can lead to difficulty eating and drinking but it is very important that patients eat and drink. The loss of skin cells in his mouth occurs because Chemotherapy attacks fast growing cells. Your mouth and hair cells are fast growing and will usually be attacked as chemotherapy continues its work inside your body. Jason hasn’t had any hair loss yet and will probably have to get another haircut before his hair falls out; he doesn’t wish to see it fall onto his pillow in large, dark clumps.

To continue yesterday’s conversation I would like to give an update about Jason’s current platelet count. Whatever the reason, whether it be the donor, the chemotherapy finally suppressing Jason’s immune system to the fullest, or something else, Jason’s platelet count has risen again! He now has 12,000 platelets and his blood level is only lowering by about .3 units per day. This is wonderful news and we look forward to more good news to come as Jason’s body takes on the properties of his brother’s immune system; this will take months so don’t assume it happens overnight. The marrow from the donor has to attach itself to Jason and slowly grow over the course of the next year. We hope to see improvement in his health as this occurs. Doctors are still slightly concerned about his platelets, but the doctors today are not his regular doctors so they know very little about his past with low platelets.

*A tip for the caretakers: Purchase or borrow a laptop for the duration of the hospital admission, along with a pair of headphones. The person for whom you are caring may not have the same taste in music, television and books. If you have a laptop you can watch TV shows, listen to music, and read online without ever interrupting the patient’s favorite TV Shows.

*As long as Jason is in the hospital I always let him have his way with the thermostat, TV, food, etc. I may not appreciate eating Domino’s pizza every other night, or watching 8 hour marathons of Gold Rush reruns, or sitting in a room that is 60 degrees tops. But this is Jason’s health, not mine. And when Jason doesn’t feel well then I don’t think it is right to overrun the areas of his life where he can make his own decisions. A lot has been taken away from him and he should be able to have control over these small things. Plus, if I were in his position I would want to have a caretaker that cared more for my needs and wants than for their own. 

They would need to be OK with eating pasta, Mexican or experimenting with new restaurants, they would need to be able to sit through hours and hours of Dateline, 20/20, 48 hours, 60 minutes, Law and Order, any crime drama, or HGTV. They would play my Youtube playlist on repeat all weekend long and tolerate my singing along. And they would need to learn how to tolerate a very warm room without so much of an utterance of complaint (get some ice water and a cold pack, people, geez. If I can shiver myself to sleep for nights in a row you can tolerate a warm room).

Now, as Jason heals I have the hope and expectation that he and I will be able to compromise on how much television and what kinds of TV shows we watch, the thermostat, and the food. Marriage should not be one-sided. If you love someone you will wish to do the activities they enjoy in order to please them; it goes both ways. But in the meantime I believe this is the right course of action.

Patients are not comfortable in the hospital. They do not sleep in their own bed, they rarely look their best, and they constantly have people asking them invasive questions and touching them. Doctors dictate where they go, what they cannot eat, when they sleep (if ever), and how often they need to shower, walk, and more. Be kind and understanding.

I should also add that Jason is an amazing patient. When Jason is sick he does not yell at me, scream at nurses, throw food, swear at the doctors, or even complain much (which surprises me because I would be complaining if I were going through all of this). And, yes, I have seen patients performing all of the aforementioned actions. This makes my job as a caretaker a great deal easier; I can focus on helping him and I don’t have to feel the stress of an angry or abusive spouse/patient.  

The Power of One Donor: Day +5

As we discussed in the last blog entry, Jason has a low platelet count. Perhaps I should be more clear to those who are not sure about the purpose of platelets.

Platelets clot blood in order to heal wounds and prevent bleeding. According to Wikipedia, “if the number of platelets is too low, excessive bleeding can occur. However, if the number of platelets is too high, blood clots can form, which may obstruct blood vessels and result in such events as a stroke, myocardial infarction, pulmonary embolism, or the blockage of blood vessels to other parts of the body, such as the extremities of the arms or legs.”

Today Jason’s platelets are low but, in my opinion, something miraculous has happened.

Last year, Jason was hospitalized for over forty days. During that time, he was internally bleeding and his platelet count was too low to heal that bleed. In that time, Jason was being infused with numerous units of platelets in hopes of them staying in his blood to heal the wounds. This never worked. Often, after infusions, a blood test would reveal that Jason’s platelet count had dropped even lower.

When Jason’s platelet count indicated a downward trend, this week’s doctor on call was deeply worried; she was actually surprised that we were not panicking along with her. After speaking to Jason’s regular doctor her panic subsided. She now knows that Jason’s blood has had a habit of low platelets. She is obviously still concerned but not overly so.

So, what is the big miracle? Well, as I said, Jason hasn’t ever, not ever, not once responded to platelet infusions. It almost made me laugh when doctors and others would still be surprised that, after the fiftieth time (that’s right, 50^th) Jason’s body still had no response. After all, his immune system, when activated, kills platelets and red blood cells.

And the day before yesterday Jason received more platelets. After testing, his platelet number decreased. 

But yesterday something happened. Jason received platelets and his platelet number increased from 4,000 to 7,000 platelets! Now, let’s be clear, a count of 7,000 platelets is still dangerously low. 95% of the people reading this will have between 150,000 and 450,000 platelets in their bodies. This hospital does not regularly discharge patients who have less than 30,000. Though, Jason has been released with a count above only 10,000. But during a bone marrow transplant all patients will lose platelets so don't be too shocked that his platelets are low. 

But why did these platelets stay in his system? Why didn’t they pass through like all these others? No one has a clear understanding of this but it seems like this particular platelet donor was the best match ever. They cannot confirm this, and it is too early to speculate if this donor's platelets would be able to perform the same increase again but so far, this is the only time a platelet infusion has worked. The hope is that this particular donor’s platelets will continue to work in Jason’s body.

Today doctors actually called the exact donor and asked if they would be willing to donate again, specifically for Jason. This person said, “Yes.”

As I type, Jason is receiving these platelets in the hopes that, once again, his numbers will rise. For now, we are thankful that they even rose at all, and that there is someone in the area willing to take time out of their day to continue donating for Jason.

Let us not forget that the bone marrow transplant is not in full effect and that Jason’s immune system still has a small amount of power to destroy platelets. But we are still joyful that for one day Jason’s body received help and didn’t harm it. Perhaps today this will happen again!!!

Looking forward to informing you about the outcome of this transfusion and thank you for all of your prayers. Yesterday was wonderful!

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*** Today Jason's second and incredibly long headache has somewhat subsided. His nausea is present and he is very tired. He has been sleeping all morning and says he feels, "Blah." But his appetite is not completely lost. 

Day +4

Just when we thought the headaches were over . . .

Doctors are still not worried, and are giving him painkillers to alleviate his discomfort. And the aches are not as bad as they were previously. Jason is able to move without vomiting, and he can listen to quiet television. Fortunately, his Tacrolimus level (the amount of a specific drug that was in his body) has decreased so we should be seeing a decrease in headaches.

Now the doctors have a new concern – Jason’s platelets. Jason has lived with low platelets off and on throughout the years. As long as he is careful they usually do not cause too many problems but without them he is at a higher risk of bleeding. The year before last he had an eight month nosebleed. Swallowing the blood led to serious stomach discomfort, and the taste of the blood often destroyed his appetite. It obviously limited his social time as well since he was embarrassed by the constant sniffling and possible blood drips.

Currently, Jason is not bleeding anywhere and we would like to keep it that way. Normally a patient undergoing a bone marrow transplant should be walking frequently. In Jason’s case, he is confined to his bed for the most part, to prevent the possibility of falling and bleeding. Without platelets he would not be able to heal the bleeding.

Although he is getting platelet transfusions, Jason’s body does not usually respond to them. Let us hope that, with the help of a bone marrow transplant, his body will be able to produce (and not destroy) platelets. Amazing how one tiny thing that you never see or give any attention can seriously impair your quality of life.

Day Counting information: As you have probably noticed, some of the posts are titled "Day -1 (negative one), Day 0 (zero), or Day +4 (plus four). Negative numbers represent the days before your bone marrow transplant. These numbers count down to Day Zero, which is Transplant Day. Any day after that is a positively numbered day. So, if today is Day +4 then this is the fourth day since his transplant.