God Bless the Givers (Day +3)

They say it is more blessed to give than to receive. Jason and I believe that statement. For years we have been receiving and, although we are grateful, we would rather be the people who are giving to others. We know what it is like to need something or to ask others for help, and it is humbling. Hopefully, one day, we can be the givers. Until then, thank you all for  giving to us. It has made all that we have been through become an opportunity to learn, grow and make new friends, and it has definitely made our situation better.

Since Jason’s health problems returned five years ago there have been many who have given to help us. For all of the meals, treats, small toys, gift cards and financial blessings, thank you! One of my favorite gifts since coming to the hospital this time has been the Chocolate Cherry Hemp body lotion from my cousin Nancy (Oh my gosh, I could eat it with a spoon). And so many people have prayed for us, given us financial help, brought us food and gifts . . .

In this hospital there are many givers. If I may, I would like to take the time to show you a couple of amazing examples of giving. I hope they will serve as inspiration to you. I hope all of us are helping our friends and family who are on difficult journeys. But what could you do for a stranger? Personally, I find it easier to give to strangers than to friends – of this I am not sure why.

While I was enjoying a momentary break to sip my hot chocolate and look for photo opportunities I noticed a basket that I had seen over the years and I wanted to inform people about it. This particular basket was filled with all sorts of beautiful, crocheted hats, free to take for any cancer patient (Jason is often treated in the same areas as cancer patients). In the past, I have seen similar baskets filled with scarfs and mittens as well. The tag on the basket says “Peggy’s Hats for Cancer.” These hats are incredibly popular on this floor of the hospital. When walking past patient rooms you will see nearly every woman and some men wearing them. They have become some kind of fashion statement among those who are fighting a war for their lives.

These hats are nothing fancy or extravagant. They are not spun from gold or embellished with expensive accessories. They are just hats. But I cannot tell you how many people have taken from this basket to cover their baldness or to simply keep their heads warm after the chemotherapy has stripped their hairs from their heads. I have seen similar baskets in the children’s hospital, in the chemotherapy units, and obviously in the inpatient hallways.

What a simple way to show people you care. What a unique way to help others and spread some love while making people feel well.

Another wonderful example of giving is through those who are willing to walk directly into your situation and offer you healing through the arts. Last year, Jason and I made friends with Kevin and Laurie. Kevin was undergoing a transplant and we were able to ask them questions about the procedure and also just chat about life. I couldn’t believe it when they told me that they are from Gays Mills, WI, a town my family and I would visit every year during their Apple Fest to sell our artwork. Even stranger that they have an orchard that we have frequented!

Their daughter Amy, a music therapist, was able to help write and compile songs written by cancer patients and their caregivers. There is a lot of talent in this CD, and the stories the lyrics tell are incredibly touching. The words will give anyone a great insight into the emotions and struggles that these people have felt and endured and, thanks to Amy and others like her, their stories can be told through lyrics and music.

Thanks to Laurie and Kevin, who also have their own songs on the discs, Jason and I have a copy of the CD. I would highly recommend it to anyone looking for a gift for someone who has been through or is going through serious and life-changing events such as cancer, or if you wish to peek into the hearts of those who have faced tremendous obstacles. You can purchase the CD on the Gundersen Lutheran hospital website here: http://www.gundluth.org/cancer/hope-grows

If you are willing to help others, be creative and use the gifts you currently possess to make a difference. Perhaps you can crochet hats or write music or maybe there is something else that you can do. Don’t be shy about helping others.

We have different gifts, according to the grace given to each of us. If your gift is prophesying, then prophesy in accordance with your faith;  if it is serving, then serve; if it is teaching, then teach;  if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy,
do it cheerfully. - Romans 12:6-8

*On a more personal note, Jason’s headache from yesterday lasted 27 ½ hours before he no longer needed painkillers. This morning he is feeling better and even ate breakfast. Hopefully his Tacrolimus level has lowered. When they do resume his regimen for the drug they will lower the dosage.  

A "Down" Day

Today Jason is a little down. At 1:30 AM he woke me to let me know that he had a pretty severe headache. He has gotten severe headaches before. Usually he can sleep them off or, with medications, conquer them in a matter of hours. So, after calling the nurse to get meds, and saying our prayers, we assumed he would be back to his old self in no time.

At 3:30 AM Jason was wide awake again, with the same throbbing pain. Drugs were given but he started to vomit from the pain. It is now 9:30 AM, 8 hours after the first signs of a headache, and Jason is still in pain. With the help of Dilaudid (a narcotic painkiller that makes his pupils enlarge) he can remove a decent percentage of pain but, once that wears off, he is feeling it. I have also been lightly rubbing his back because he says it makes him feel better. For now, he feels most comfortable by resting on his side with a pillow over his head. The doctors said to keep doing what he is doing and to rest; that this just may be a "down" day.

Every nurse and doctor on this floor has been made aware of the situation and no one is very concerned, which is a good thing. Afte rall, Jason's platelets are not completely bottomed-out, his blood level is good, and he is otherwise "healthy." They are taking care of him very well and have a few hypotheses about the cause of this record-length headache:

1. Jason is under a lot of stress. In the past seven days he admitted himself to the hospital, signed a stack of papers that informed him that a possible side-effect of transplant is death, lost 3/4 of his average sleep time, lost his privacy, underwent a series of medication infusions, saw his brother undergo surgery, and received a transplant. No doubt that all of these factors could combine to cause a pretty nasty brain pain.

2. Chemo/ATG (Anti-Thymacite Globulin). Jason has received Chemotherapy and ATG this past week. Although the chemotherapy drug itself should be out of his system, ATG, Anti-thymocyte globulin, an infusion of horse or rabbit-derived antibodies against human T cells (You read that right, horse or rabbit...) which is used in the prevention and treatment of acute rejection in organ transplantation and therapy of aplastic anemia. ATG can have some nasty side effects. Although those side effects usually occur while being infused (in Jason's case, he would have the chills and shakes) it is possible for side-effects to present themselves even days later. Headaches and flu-like symptoms would not be uncommon.

3. ***This morning's most-likely candidate: a high Tacrolimus level.
    Tacrolimus is an immunosuppressive drug that is mainly used after allogeneic organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. It is a 23-membered macrolide lactone discovered in 1984 from the fermentation broth of a Japanese soil sample that contained the bacteria Streptomyces tsukubaensis. That's a fancy way of saying that it stops his immune system from destroying Aaron's marrow donation before it can grow in Jason's body and it is used in conjunction with other immunosuppressants such as ATG and Chemo.In the past, when Jason's body built-up too much Tacrolimus his hands would shake and he would get some pretty nasty headaches. Jason is currently on Tacrolimus and his hands were shaking this morning. Solving his headache could be as simple as him skipping a few doses of Tacrolimus and then lowering his continued dosage.

4. *Least likely and no evidence to support thus far: Brain bleeding. Obviously a headache this severe that lasts this long should be examined and doctors have already checked on Jason for the usual signs of brain bleeding. His platelet count is low, but not THAT low. His blood level is not lowering rapidly, his vision has not changed, he can move his head, his neck does not hurt. If his Tacrolimus level is normal then Jason will get a CT scan just to be on the safe side. Once again, no doctor is concerned of this possibility.

For now, if you could take some time to pray with us for this awful headache and nausea to pass we would really appreciate it. We have been praying and will continue praying and we hope he gets better quickly.



*** UPDATE: Doctors just confirmed Jason's Tacrolimus level is too high. He will have some time off of these pills and will have a lower dose when he resumes his regimen. If the headache persists until the evening then they will perform a backup CT Scan as a safety precaution.

Happy New Birthday

“Happy New Birthday!” Shouted the cheerful nurse who entered our room at 6:00 AM. We took a long pause.

Yes, that’s right, it is Jason’s new birthday. Something we had never heard but makes a great deal of sense. Today, March 5, 2013 is a day we hope to be able to celebrate. A day we can look back to and say, “That was one of the best decisions we have made.” A day about which we can tell our children (if we choose, as a married couple, to have any children), A day we can smile about and cheerfully celebrate every time it arrives.

While there are some around us who look at us with furrowed brows, pursed lips, and concerned eyes, we are looking at each other with excitement. Don’t get us wrong, we are not enjoying the pain and the idea that this may not work. But we believe that it will work. And we are hopeful.

No one can fully understand what it is that we have gone through together. Perhaps they can quote facts and numbers, and repeat the story as it was told to them by someone who heard it from someone who told them, but only Jason can know what he felt and understand his situation.  I am proud of who my husband has become despite all that he has faced.

Today is a good day but we have a long way to go. Let’s hope that the effects of the chemotherapy do not make him too ill. Let us also hope that, during the three months of home isolation, he will not be exposed to any sickness that could harm his health and recovery. Let us hope that in the next six months of avoiding groups and events he will not get bored or fatigued. Let us hope this works.

Just moments ago Aaron left the surgery unit to arrive on the same floor, in the room across the hall from Jason. My husband stood in the hallway , so thrilled to see his big brother coming. And then Jason disappeared, ducking into his own room. What happened? I smiled at Aaron, who likely doesn’t remember this, and then I peeked into my husband’s bedroom.

I saw the tears splash on the faux wood floor before my eyes gazed into my husband’s. He was crying. His cheeks were red, his eyes were small and wet, and he put his face in his hands. Reaching for some tissues, I asked him what was wrong. He explained to me that he didn’t want to have to see his brother in that condition; on a bed, tired, eyes barely open, absent of expression. And all for him.

Whatever is happening with Aaron and Erica in their room is their own business. We have been reassured by doctors and nurses that he will be just fine. Other than that, we will wait until the facts emerge before we speculate about his condition and what he went through. I hope he has some funny stories and we hope to visit his room soon. What I can discuss is Aaron’s contribution and dedication to his brother. Jason had two perfect donor matches. When doctors said they were going to choose Aaron, he didn't say, “No.” He didn't ask them to choose the other donor instead of him (and they would have used the other donor if Aaron would have denied donating). Instead, he came to the hospital today knowing that he would undergo a surgical procedure to harvest his bone marrow for his brother. No doubt that his back will be sore for a while, and that he has undergone quite an experience, but now Jason and Aaron will have something to bond over for the rest of their lives. Aaron is a giver, just like Jason, and we are so thankful for his willingness to give what could possibly save my husband’s life.

If all goes well, Jason will be receiving a transplant very soon. And, if all goes well, Jason will share some similarities to his brother.

After a bone marrow transplant, the recipient won’t really know if it is working or not for three weeks. After that, it can still take months for it to grow and be stable. That’s a long time to be unsure of the success of the procedure. But if it works Jason could get Aaron’s allergies, and he most certainly will get the same blood type as his brother. Currently Jason is O-. In a few weeks or months Jason could be A-. If Jason’s donor would have been his sister, Jason’s blood type would have changed but so would his blood gender; his blood would have become female blood. No problems with that, just a neat fact.

So, today we celebrate Jason’s new birthday! Looking forward to the future!

On a less intense note, last night Jason’s upper lip starting swelling. They cannot narrow down the cause but it was pretty funny to see him bumble around here like Daffy Duck.

A Good Meeting - Dr. Peggy

*** This entry was written before Jason was admitted to the hospital for a transplant.

In order to get a transplant you must undergo a certain amount of pre-transplant testing to determine your health. A bone marrow biopsy, a breathing exam, and an arterial blood draw, as well as multiple blood tests are a few of the required procedures.

Although these tests are usually time-consuming and sometimes painful, this time the tests were wonderful.

When we walked into the testing room we felt so defeated.  Since death is listed as a possible side-effect, the idea of a bone marrow transplant is scary. 

The doctor began testing Jason and slowly the room became a little more comfortable as we opened up to her about our concerns, and she opened up about her family. In an hour or so we became fast friends with Dr. Peggy, a Christian, whose smile became impossible to resist.

Her sense of humor is witty and charming. She didn't tell us horror stories, or accuse us of being faithless. She didn't focus on the horrible current situation but rather talked about the positive results. She joked about her daughter's trip to Louisiana, and poked fun of her husband and son who recently lost their hunting bait to a bunch of rowdy squirrels. She made us laugh, not cry. And in those moments she honestly made us forget all of our problems. I hope to meet more people like this while we sit in the hospital room. What a difference a positive attitude, faith, and a friendly face can make!

We left that room, smiling, holding onto her business card and a piece of paper with her personal home phone number and email, as well as an invitation to attend church with her family on Sundays during my stay at the hospital. May God bless Dr. Peggy for turning a scary moment into an enjoyable one. 

Day -3: Never say, “Never.”

Ahhh . . . Saturdays at the hospital have their positives and negatives. For now, I will only discuss the positives and hope that we will not have to deal with the negatives. On Saturdays there are very few people here so we can wander the halls without worrying about crowds. It is a lot more relaxed and we started the day with our morning walk/coffee. We also watched the sunrise from our hospital room window (see images below). It was a good thing that we were moved across the hall yesterday so that we could see the sunrise every morning. *Story continues below images . . .

On our walk we met with O’Brien, a middle-aged lymphoma patient and transplant recipient. His story was pretty incredible so we hope to meet with him again soon. He has been battling the cancer half of last year. He was admitted to the hospital on that same day as Jason, and he will be receiving his transplant on the same day as well. His story is a little different in that he will be receiving his own stem cells, and not the marrow of a donor. These types of transplants are ideal and he will likely be out of the hospital in just a few weeks. Incredible!

O’Brien is a runner who had his knees replaced five years ago. Doctors told him he wouldn't run again but he just completed another half-marathon last year.

His story reminded me of a particularly inspirational moment that I experienced while on vacation in Ft. Myers Beach, Florida. I was standing in line at the beach Dairy Queen and noticed the attractive man in front of me; his legs had large scars running up the back of his calves. He was a tall young man and I whispered something to my mom questioning what caused the scarring. Just then, the man grabbed his ice cream through the window and turned to walk away. I noticed a small black tattoo of text across his bicep, it read: “You will never walk again.”

I have reminded myself of this memory whenever life starts to get “impossible.” Clearly, that young man had been in a situation where he was told he would not walk again. But there he was, on the beach, scars on his legs exposed for the world to see, and walking. Never say, “Never.”

PS – Last night Jason and I were watching a purple light flashing in one of the windows across the way. When we asked an NA about the lights, he told us that the hospital has implemented a UV light cleaning system in all of their rooms, in addition to standard housekeeping procedure. Not so sure how it works, but the lights are pretty to watch at night when we cannot sleep.