Day +96: Out of the Cocoon

monarchImagine you are a Monarch Butterfly caterpillar. You are on a milkweed leaf munching away. Your skin is stripped yellow, black, and white to look like a part of the plant. At the same time you are aware that predators would love to eat you. At long last, you begin to change into a chrysalis. Finally, your new home turns gray. Your worries are over. You have that sense of protection you have craved. Nothing can get to you now. Nothing. Days later, your protection begins to crack releasing a built up pressure. You begin to squeeze out of your old skin. But you have changed. You are not a worm. You are a beautiful new creature.

That’s the way we have felt here at MD Anderson. Protected, like in a cocoon. We were on a special floor for transplant patients. Everyone knew the special needs for my health. Upon release from the hospital on Day +12 we were sent to Ambulatory Treatment Center (ATC) for daily visits. It was a special unit composed of nurses who know the needs of Stem Cell Transplant (STC) patients. We were safe, protected, comfortable that I had the best possible care.

The few times we were ushered off to a non-transplant area, things changed. We were not greeted with the same assurance. We were mostly in a holding pattern and anxious to get back to our little cocoon. Then our shell began to crack.

We were given days of from ATC. No visit. No blood draw. We enjoyed our freedom knowing that we would soon be back to safety. Then the days off became more numerous. Still we were comfortable. Then it happened.

Dr. Khouri came for a Tuesday visit and announced that I had graduated out of the now frequent ATC visits. We were thrust into the cold. We wouldn’t see anyone from the STC until our next visit with Dr. Khouri a week and a half later. Even at that, we still had several occasions to see the results of a blood draw – tests, you know. Then they ended.

I will not have another blood test for a week. I don’t know what is happening inside. I know how I am outside. Physically, I’m fine. Emotionally, I think it is taking a bit of a toll. I want to know, but I can’t know – not for another three days. My cocoon is shattering. I am being thrust into the great unknown.

The day after my next doctor’s visit, we will be traveling home. Freedom. Scary freedom. I will have to spread my new wings and fly. Fly? Like the monarch, it is an essential part of my new life. I will fly into the loving hands of my wonderful family and friends. I will fly into the hands of a new oncologist. One I have never met. I will fly into a scary world of potential disease and sickness. I will be flying with only a tenuous electronic connection to my MD Anderson support team.

Lord, give me a monarch’s courage. I need it to fly into my new life. Show me what to do, what to say, where to go. I’m out of the cocoon and spreading my wings.

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Day +94: Observations

At six days until our homecoming, it is time to make some observations about what we have seen and done.

Observation 1: As a recent Cancerwise poster mentioned a few days ago, we can come here expecting to see people dying of cancer. Instead, we see people living with cancer … and the expectation of healing. Sure, there are those who are obviously suffering. One gentleman had part of his nose and upper lip eaten away. He didn’t seem to be troubled by his appearance. He was surviving and undergoing treatment to improve his life.

We talked to a lady who blatantly disregarded signs of GVHD (Graft Vs Host Disease). The result is that she has been in Houston since December of last year. She wasn’t discouraged. She was glad the doctors could keep her out of the hospital again.

Observation 2: When we are waiting for appointments, we have the opportunity to people watch. We have easily come to the conclusion that MD Anderson is the best place to be if cancer is a part of a person’s life. Why? People from around the world come here for treatment. Some are easy to recognize like the ladies in black burqas. Of course those from an oriental background are relatively easy to spot, especially when they are accompanied by dialogue in their native language. We see Hispanics, European, tons of Americans, and assorted other nationalities. The world seems to know that MDA is the best place to be if a healing from cancer is desired.

Observation 3: The doctors, nurses, staff, and support people are some of the friendliest as well as the best in the world. It doesn’t make any difference who is asked, if help is needed, those with an MDA ID will stop what they are doing and help. They will even stop pause in their task to walk the patient to a place where he or she cannot help but reach the required destination.

Observation 4: It is easy to recognize first timers. They walk through the door to the main building and gawk. There is really no other word for it. At first glance and maybe the second and third, MDA Main is overwhelming. The first people they see is a University of Texas police officer who will willingly direct them to their destination or the information desk. Still confused, those of us who are “old timers” will stop and help. Just the other day, two small groups were standing confused at Elevator B. They needed Elevator C. I directed first one, then the other across the lobby to where they needed to be. Another couldn’t figure which floor they needed. I had been to their desired location. I could help.

It’s that way with all the patients. We remember our first visit. We want the new patients to be comfortable in their new surroundings. We are “paying it forward.” No one asks us to, we just do it. We become an extended part of the healing experience. We are family.

Observation 5: MDA loves to help people in any way possible. Whether the need is financial, spiritual, emotional, or many other types of need, MDA has a program. Grants are available for those who cannot meet all the expenses. Chapels for many religions are on premises. Services to help caregivers as well as patients are made available. Melanie enjoyed a free chair massage while I was doing a PET scan.

My tinnitus grew worse from all the drugs. My APN (Advance Practice Nurse) set an appointment for me with an audiologist. He confirmed what I already knew. I had hearing loss in both ears. He priced a pair of hearing aids for me. Way out of my league. He investigated my insurance and applied to a foundation for me. I now have top-of-the-line hearing aids – for free.

I’ll conclude with this. We have observed that MDA is a place of miracles. We have experienced them personally and heard of them from others. We thank God for MDA and the work being done here.

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Day +88: How do you feel?

How do you feel?

My dad had a pat answer to that question. He would smile and say, “With my fingers.” We became so sick of the answer. We quit asking. Maybe that is what he wanted. greetingsYears later, after Alzheimer’s had eaten its way through Dad’s memory, I began to ask the question again. I really needed to know. Dad’s face would light up. The boyish, impish smile would spread across his face. In retrospect, I can almost read his mind. Oh no. Another test. Oh, wait. I know the answer to this one. “With my fingers.” Aced that one.

How do I answer that question on Day 88 post-transplant? As a reference, let’s choose the common “fine” as our base answer. What is fine? On most scales, “fine” is half way between “poor” and “excellent”. So “fine” generally equals “OK”. I can accept that. But, what does “OK” mean? I’m beginning to think “How do you feel?” is a loaded question. The answer can mean many things.

If we meet a friend in the grocery store and he asks that question in passing, does he even want an answer. “Fine” is just a formality.

If the friend stops to talk and in the course of conversation asks the question, perhaps with a light touch to my arm, what is he now asking? Does he really want to know? Is he really concerned with my health? “Fine” begins to take on a new depth. “I have my good days and my bad days. Today I’m OK.” How deep I go depends upon where I am – a grocery store – and how good of a friend he is.

Perhaps I walk into the church office seeking clarification of my giving record. My pastor walks by and invites me into his office. He closes the door and asks, “How do you feel?” I know this man. He is truly interested in how I feel. The location is private. I can freely answer. “I’m fine, but I have been a bit fretful lately.” We begin to dig deeper into my pat answer. My pastor, like a fine spiritual surgeon, probes and questions until he finds the problem – and the solution. He anoints me with oil and prays for me. The release is reassuring. Someone cares. I have shared my burden with a brother in Christ.

Now it is time to visit my MD Anderson physician. He and his PA walk through the door, shake my hand, then asks the fateful question, “How do you feel?” My “fine” is just the opener. I tell him what is happening inside my body – those little quirks and tweaks that may indicate trouble. He probes. He questions. He may send me for tests. He finds a solution. My healing continues.

So, how am I feeling? I’m fine though I feel like a caged animal. I want out. But I’m a rule follower, and I have restrictions. I’m not supposed to go anywhere I wouldn’t take a newborn baby. My immune system is like that. Non-existent. I feel like a thoroughbred being led to the starting gate. Let’s get this race started. I want to run. I want to be HOME! I feel like my strength is near if not exceeding what it was before the transplant. I want off some meds. They are playing havoc with my blood pressure and blood sugar. Other than that, I feel fine thank you.

Perhaps Dad wasn’t that far off the mark. Maybe the correct answer to “How do you feel?” is “With my fingers.”

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Day +78: We Passed a Test!

Yep, things are looking up. We participated in our personalized SCT Survivor Training class. We answered many questions. We looked at a paper copy of a PowerPoint presentation filled with information about living safely at home after a Stem Cell Transplant. Then we had to answer questions about what we saw in several enlarged photos – mostly about what to look for in GVHD (Graft Vs Host Disease). We are now untethered from one department – our first step towards going home.

I also passed another test: a complete pulmonary function test (PFT). It consisted of three different breathing tests while on a machine housed in an oversized phone booth. Two of the tests were repeated three times for comparison. I passed each with better numbers with each repetition. The final test was only repeated twice, but after a four minute break. Passed them both, too.

Even more interesting was the PFT tester. She is a committed Christian, so we spent the four minutes discussing the miraculous works of God in my life, the workings of MD Anderson, and the various patients she sees. It was a wonderful time with a wonderful sister in Christ. We hugged at the end and she wished me God’s blessings.

But today’s eventsquilt didn’t end there. I made my daily trek to the mailbox and found a key to box #5 in it. I found #5 and opened it to find a large box from Melanie’s cousin. I finished my walk around the quad two times carrying the box before I returned to the apartment. In the box we found two lap quilts custom made for us. Melanie’s is a beautiful blue/pastel pattern. Mine is a lovely patriotic theme with shades of brown as the predominant color. Perfect. Inside, she had stitched a personalized tag stating for whom it was made, buy whom it was made, a personal note, Bible verse, and the year. Melanie’s cousin says this is the gift God gave her and she likes to share it whenever possible. Thank you!

I now feel free to release another blessing notice. I had my hearing tested several weeks ago. My ever present tinnitus has become more severe with all the treatments. Melanie had been wanting my hearing tested for a long time, because I accuse her of mumbling. She says she is NOT mumbling. Honestly, we know that I have hearing loss. The audiologist  did advise that I get hearing aids. He pointed out a top of the line model that has help modes that often relieve some of the tinnitus. They only cost $2,000.00 each. Yeh, sure.

The audiologist asked about insurance and said they would check.  If hearing aids

weren’t covered, we might qualify for a program. I signed the papers today. Free hearing aids are on the way! I can hardly wait. I sat in the shuttle today while everyone was talking. I couldn’t understand anything anyone was saying. This and many other problems may be solved! PTL! Hallelujah! Amen! God is indeed good.

These are just samples of how God has blessed us with miracle after miracle while we have been here. We will discuss more of them as time goes by.

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Day +75: One Day at a Time

More years than I want to think about, Merle Haggard wrote a song that should become the stem cell transplant patient’s theme song. The chorus goes like this:

balancingOne day at a time sweet Jesus that’s all I’m asking from you

Give me the strength to do every day what I have to do

Yesterday’s gone sweet Jesus and tomorrow may never be mine

So for my sake teach me to take one day at a time.

This is a lesson that Melanie and I had to learn early in my diseased life. It has not been an easy lesson to learn, and I’m not sure I have mastered it yet. I’m working on it.

Each of my days is the same only different. Sound confusing? It is. Allow me to illustrate.

Ever since we arrived at MD Anderson, we have come to the hospital nearly seven days a week for clinics, tests, scans, blood draws, etc. It has become a routine. Except for scan days and clinic days, everything is the same … until something happens that isn’t the same. Last week is a prime example. Sunday and Monday were routine. I made my appearance in ACT (Ambulatory Treatment Center) for my usual doses of anti-viral and magnesium infusions. We leave and get back to the apartment for an afternoon of R&R.

That Monday afternoon, I notice a rash on my legs, then my arms. Uh, that’s not good. I report this finding on our Tuesday visit with my doctor, APN (Advance Practice Nurse), and Pharm D (personal pharmacist) who take a quick look. They kind of nod their heads and pronounce this a clinical diagnosis of GVHD (Graft Vs Host Disease). They check various other parts of my body and find some mild rashes on my chest, stomach, and back. A prescription for a steroid cream and prednisone (an oral steroid) are ordered, and a biopsy for confirmation is collected by the APN.

Nothing has been the same since. If you have ever been on prednisone, you know what havoc this can cause. My blood pressure has been high, my blood sugar has climbed into dangerous areas causing a rapid visit to the endocrinologist APN. This resulted in adding two diabetic drugs to my growing list of meds and blood sugar finger pricks before breakfast and supper.

I now take over fifteen different pills or capsules every day. That may not seem a lot for some people, but I’m used to a multi-vitamin and two blood pressure pills. I have set five reminders on my phone to remind me to take my pills at the correct time and in the correct order. That is not including pills that I take with meals. Yes, it’s that complicated. It took Melanie two days to get it all figured out because some of the pills have to be kept separate from others by at least two hours. Poor gal. I feel sorry for her, but her mind is sharper that mine at this time.

You probably also know that for every medicine taken, side effects follow. Some of my pills counteract the action of other pills. My anti-rejection drug causes problems that must be countered by two other pills. These have their problems so … you get the point.

Yes, we just get into a routine and a day or two or a week later, it is changed.

That is why the “One day at a time, sweet Jesus …” is so apropos to our lives right now. There is another verse I cling to:

Therefore do not worry about tomorrow,

for tomorrow will worry about itself.

Each day has enough trouble of its own.

Mat 6:34 (NASB95)

Sometimes it is hard to do, but I keep trying.

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A New Cancerwise Post and Video

This Cancerwise vidoe was recorded about three weeks ago. The accompanying blog was written last week. It includes something I have never done before in a blog post. See what it is at www2.mdanderson.org/cancerwise/2014/09/a-stem-cell-transplant-patients-tips-for-recovery.html

HINT: it sorta rhymes

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Day +53: Ten Reasons to Be Thankful

Thank YouOne of the latest challenges on Facebook is to name X number of things you are thankful for over Y number of days. (Notice the use of my high school algebra.) So I thought it appropriate to make a list of what I am thankful for.

 

  • A place to live in Houston. Hospitality Apartments has been a real blessing to us. We have stayed here nearly three months for a sum total of $100.00. Unfortunately, three months is the longest we can stay, so we are praying for new housing to be available from one of the several places where we have applied.
  • Melanie, my wife, my caregiver. We have been married nearly 48 years. I am the one who has been blessed because of her love. She is a real trooper. Not only does she take care of the apartment, cooking, laundry, etc., but she has learned to change my CVC dressing, administer my home infusions, and a multitude of other “nursing” things. I love this woman more than I can ever say.
  • Lucas. Dr. Lucas was the one who first diagnosed my enemy, CLL – Chronic Lymphocytic Leukemia. I think the diagnosis hurt her more than it did me. When she told me what she thought I had, it was my opportunity to comfort her, telling her that it was OK. She is one of the best doctors in Hot Springs.
  • Kota, my home oncologist. Dr. Kota has literally kept me alive for the last several years. Her knowledge and insight into CLL has kept this disease at bay. Even more important, she knew when she had reached the end of her expertise and sent me to MD Anderson Cancer Center.
  • MD Anderson. This specialty hospital is the greatest in the world. The research done here has changed the way cancer is treated. I was blessed to get into a drug trial lead by Dr. Wierda and administered by Dr. Kadia. It brought my runaway CLL under control enough to undergo a stem cell transplant.
  • Khouri and his medical team. Dr. Khouri is my transplant doctor. Under his leadership, I am progressing as expected through my transplant experience. I am doing well, gaining strength every day. My latest tests show that my immune system is now 88% donor. That is very good and well on the way to 100%.

 

My list would not be complete without addressing some folks back home and around the world.

 

  • Tara Johnson and Sunny Mirchandani. Tara, our oldest daughter, left her family in Oregon to come to Arkansas to help us in our move to Houston for my transplant. We couldn’t have done it without her. Sunny paid her air fare to get her to Hot Springs and back home to Oregon.
  • Christy Fellows. Christy is our youngest daughter. She is checking our mail, scanning what we need to see, emailing it to us. She has been Melanie’s right hand woman back home doing all the things that need done there.
  • Tammy Rhoads. Tammy, our middle daughter, has been an encouragement to us. Because of illnesses, she has not been able to do as much, but we certainly appreciate that she is taking care of two of our grandchildren, one of whom has a chronic illness.
  • Finally, but certainly not least, our prayer partners and encouragers. People all around the US and various nations around the world have been lifting us up in prayer. I am absolutely positive that their investment in our lives has played a large part in my healing and our peace.

 

The list could continue, but alas, I must stop writing. To all who have and are playing a part, great or small, in our healing adventure, THANK YOU! We couldn’t do it without you.

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