Down & Out

Friday was a rough day. I had called Nick in the morning...he always tells me he is "fine." I show up at the doorway of his room to find "the sign" on the door. The sign I didn't ever want to see on Nick's door...saw them on plenty of other people's doors,but, stay away from our door. Well, this was not to be the case. The sign reads "CONTACT PRECAUTIONS" meaning everyone who goes into the room must scrub, put on gown and gloves and stay in this get-up until you leave the room again. The gown is hot and the gloves are even hotter. Nothing like sitting around in a paper gown and plastic gloves for ten to twelve hours. One of Nick's cultures came back positive, and therefore, visitors must wear all this garb to keep from carrying the germs out to other patients or areas on the floor where other patients may come into contact with them. The fact that he has this positive culture is also somewhat concerning to me, although, I am told by Dr. J that "this is all to be expected."

Nick's mouth sores seems to get worse each day. His cheeks, gums, and tongue are all swollen and his speech is funny because of it. He is doing his best to get soft foods and liquids down but it is not easy. He seems to be handling the pain aspect of it, but, I fear that it will get worse before it gets better. He had a fever today of 38C, which required that he be "cultured." Anytime Nick spikes a fever he has to have blood cultures drawn from his line and his arm, CXR, and cultures of other body fluids that shall remain nameless. Because of the fever, they added new antibiotics to his bug-fightng arsenal...Zosyn and Vancomycin. While receiving the Vancomycin, he started having an allergic reaction by turning red and rashy all over his head, neck and chest. He will now have to get Benadryl before each dose in order to limit his reactivity to the Vanco.

Other parts of his day were good, he had a visit from a college buddy, which is always good to take Nick's mind off the medical stuff. Kate came and brought some lemon Italian ice, which Nick enjoyed very much. Kate, Nick & I watch the "Stand Up 2 Cancer" show on TV. It was very good, but, very sad at the same time. We all got a little smutney watching and hearing so many stories about how cancer has affected and touched the lives of so many people.

I got Nick's permission to put some glow in the dark stars on his wall. I created a lovely milky way, so he can look at the stars and dream good dreams. It was so hard to leave this very quiet, glassy-eyed, hurting and scared puppy tonight. I can't even feel his forehead or give him a hug without a purple non-latex glove between coming between us. I always tell him to call me anytime in the middle of the night...but, so far, he hasn't. I hope that is because he is sleeping. As I turned out his room lights and left my dear son alone in that room, my heart was heavy and my tears fell silently into another dark night.

"Count your nights by stars, not shadows; count your life with smiles, not tears." ~ Italian Proverb

High & Tight

Sorry I have not posted in a few days. Things have been just a little bit crazy lately. So here is the post I started yesterday...

Today (yesterday) Nick gave himself a military haircut…by pulling out all his hair! The process of Nick losing all of his hair has started again for the second time. He has managed to sculpt himself quite a look, by removing all of the hair from his beard area, his mustache, and the sides and back of his head. Nick said he wasn't ready to pull out the top, so he now looks like he has joined the military, at least until tomorrow (when all of his hair falls out), then he will look like he belongs to the fearless army of people battling leukemia and recovering from their bone marrow transplants!

Nick has been doing great,despite feeling quite yucky. The side effects of the chemo have caught up with both ends of his GI tract; although, he seems to have gotten through the worst of the nausea and vomiting. His appetite and his “stomach” are not right and probably won't be for a while now.

Mouth sores have moved to the front burner as the #1 problem of the day. These areas are very painful and make it difficult to chew, eat and sometimes even drink. Nick will be on a liquid/soft diet until these sores go away. This usually happens when his counts start to rise (which has not happened yet.) His food choices will be limited due to his inability to chew anything with any real substance to it and I am concerned because he continues to lose weight (down ten pounds in the last five days!)

Nick's white count has pretty much bottomed out – down to 70 (and today 50…basically zero!) Dr. J (attending physician) is pleased with his progress to date and he has no specific concerns. So we wait, watch, and wonder when the magical day will arrive that Dr. J will come in and announce that Nick’s new marrow has finally started to work. Oh what a joyous day that will be! Nick is still insistent that he will be going home on his birthday, September 11^th and the doctors seem more willing to concede that he may be right, despite no factual evidence to support this theory. I pray that he is right!

Tic Toc

"This time, like all times, is a very good one, if we but know what to do with it." ~Ralph Waldo Emerson

They say that time flies and time waits for no man and a stitch in time saves nine and there is no time like the present and time heals all wounds. When you arrive somewhere late, someone always says, "It's about time!" Time provides the ever present countdown on the rest of our lives.
I always need more time, I can never get enough of it. I need to buy some time...mass quantities of it. When I am at the hospital, the minutes go by. I don't mind. I consider each one a precious moment that I will never get back. Time spent with my son. Time spent with Kate & Nick together, trying to make a go of a relationship within the confines of an oncology unit. Time to see my daughter and my husband as we pass like ships in the night and the morning and the afternoon. Time spent quietly, reading, talking, relaying stories. Time spent laughing and finding humor even in a crazy place like a hospital. Good times. Not too many bad times....keep the bad times away! Time can be a relentless task master. Why do they have expressions like "the ravages of time?" Should I blindly spring forward or cautiously fall back? I see the hour glass with only a few grains of sand left. Poor Dorothy! Damn those flying monkeys!

Nick's counts have started to fall and the waiting continues. Waiting for the transfusions to start. Waiting for his appetite to return and waiting for the pounds to stop dropping off. Waiting for Nick's donor marrow to "engraft." Waiting for the other shoe to drop. How much time will it take? Time is not on our side in this fight. The longer Nick goes without an immune system, the more danger there is from infection. Isn't it time to go? Hurry new marrow...there is no time to waste, I want my boy to be free again!

Story of Ganesha

Nick's cousin, Jillian, went to India for a month this summer to study dance in India. While there she learned about Ganesha -"the mover of obstacles." Since Nick has a rather large obstacle to move right now, she decided to bring him home a statue of the Hindu deity, Ganesh. Below I found an explanation of all his arms, and the reasons for all the different things he is holding in his hands. If you want to know why he has an elephant head, you will have to look that one up for yourself.

Ganesha — the elephant-deity riding a mouse — has become one of the commonest mnemonics for anything associated with Hinduism. This not only suggests the importance of Ganesha, but also shows how popular and pervasive this deity is in the minds of the masses.

The Lord of Success
The son of Shiva and Parvati, Ganesha has an elephantine countenance with a curved trunk and big ears, and a huge pot-bellied body of a human being. He is the Lord of success and destroyer of evils and obstacles. He is also worshipped as the god of education, knowledge, wisdom and wealth. In fact, Ganesha is one of the five prime Hindu deities (Brahma, Vishnu, Shiva and Durga being the other four) whose idolatry is glorified as the panchayatana puja.

Significance of the Ganesha Form
Ganesha's head symbolizes the Atman or the soul, which is the ultimate supreme reality of human existence, and his human body signifies Maya or the earthly existence of human beings. The elephant head denotes wisdom and its trunk represents Om, the sound symbol of cosmic reality. In his upper right hand Ganesha holds a goad, which helps him propel mankind forward on the eternal path and remove obstacles from the way. The noose in Ganesha's left hand is a gentle implement to capture all difficulties.

The broken tusk that Ganesha holds like a pen in his lower right hand is a symbol of sacrifice, which he broke for writing the Mahabharata. The rosary in his other hand suggests that the pursuit of knowledge should be continuous. The laddoo (sweet) he holds in his trunk indicates that one must discover the sweetness of the Atman. His fan-like ears convey that he is all ears to our petition. The snake that runs round his waist represents energy in all forms. And he is humble enough to ride the lowest of creatures, a mouse.

Obstacle Obliterated

Nick is doing well. Today was a good day. "Extreme Make-Over" at the Pippen household is in full demolition mode. I have been warned to stay away, so I will be sleeping under the Hanover Street bridge. It has been a long, long, long day in terms of hours; but, all worth it, as Nick has managed to get through another day without the side effects of today's chemo catching up to him. He has not eaten much today and has lost about five of the precious pounds it took us so long to put on him. I just have to think of it as "cutting weight" for a big fight! If those crazy wrestler's and MMA guys can do it, I guess he can too. Kate did the laps with him tonight and he is sporting a new "adapted" shirt that Aunt Barbara was able to finish. Nick will receive his last chemo dose in the wee hours of the morning and that will be one more obstacle obliterated! (Those are Nick's words) Also, in Nick's words, "Me and ganesh... f*cking things up!" Remind me to tell you the story of the ganesh! Anyhoo, I am still at the hospital and my cardboard box under the bridge calls.
P.S. - The cat has nothing to do with the post...I just thought he was cute.
P.S.S. - Young At Heart dedicated to Infantry Guy/Prankster!

A Day Later

What a difference a day makes! Nick felt much better today. He was able to eat a little more and was up and about in his room and did his laps. He had enough energy to argue with Mom about climbing up on chairs to fix a broken VCR/DVD player and announce with a pout that he was "bored." He has another day of rest tomorrow, so I am looking forward to a good day.

Dr. Jones, the current oncology attending big wig, stopped by briefly. He announced that basically all of Nick's remaining blood cells are "dead" "but they just don't know it yet!" Well...OK? Thank you Dr. Tactful. (It was somewhat humorous though, in it's own macarbre way) I really do like Dr. Jones and Nick knows his son (who is around Nick's age). Sometimes I don't think the medical people think too much about what they say or how they say it. We are still waiting for Nick's counts to drop (not that we want them too) but we know that they inevitably will. There is no undoing chemo and therefore, it is only a matter of time before we see this reflected in Nick's blood work. In the meanwhile, Nick has a brief respite, before he has to receive two more days of the Cytoxan. Unfortunately, it will be hitting him throughout the weekend, so he most likely will not feel well again for a few days. I cannot believe it is Labor Day Weekend. It doesn't seem like a holiday to me. It is late and I must go to get some sleep.

The Bag of Life

Well the day started a little on the rough side for Nick. He did not feel well for the better half of the day. He is still fighting the nausea and vomiting side effects of his chemotherapy. Despite an arsenal of anti-emetic medications, nothing seems to really do the trick. Unfortunately, Nick has not been able to eat or drink much of anything due to the nausea. He slept fitfully throughout much of the morning and early afternoon (although he said he slept great last night).

Nick continues to have the hiccups which can be a side effect of the chemo drugs irritating the diaphragm. We have tried several "old wives tale" cures which have not worked. We have all threatened to scare the crap out of him in hopes of driving them out of his body. But, to this point, we have not accomplished this mission. They will randomly disappear for no reason and return just as unexpectedly, like a relative you don't really like showing up on your doorstep in the middle of the night.

The big news is that Nick received his bone marrow transplant earlier today. As is often said, the whole process is very anti-climatic after all the hullabaloo leading up to this day. The lab tech arrived on the floor with the precious cargo in your standard Igloo ice cooler. Nick and I had just left the room to take a walk when we were told that "it was time." With the enthusiasm of a death row inmate, Nick returned to his room and got ready to get hooked up to what I am now calling the "bag of life." The marrow is in an IV bag, just like a blood transfusion. The volume of the marrow transfusion can vary, but in Nick's case, it was quite a lot (1.6 liters) therefore, it took about four hours to infuse the entire amount. The main concern throughout the infusion is a transfusion reaction. Nick has been stable with no problems thus far. The other exciting thing for me was that the marrow donor was the same blood type as Nick (A+) so Nick's blood type won't be changing! If the marrow's blood type was different, then eventually Nick would have the same blood type as the donor, and the Mom in me didn't like that idea so much. It is weird what things bother you when you are going through this process. Nick's night nurse just came in to check on Nick and his bag of life is almost completely infused! So far so good. Now we wait and hope and pray for all good things to come!

In the BMT world, the day of one's bone marrow transplant is considered to be your "new" or second birthday. Nick wasn't too thrilled with the idea unless there were presents involved...lol! Nick says he likes his birthday...so we didn't go overboard with the birthday theme. But, I guess I will just say for the record...Happy "BMT" Birthday" to my wonderful, strong son. I am sorry that anyone has to have a BMT birthday, but, if you have to have one, I guess we might as well celebrate the gift of life that has been given to all of us by another human being. Through the generous and selfless act of this donor, Nick has been given a second chance at life and hope for a cure! In that light, all seems right with the world for now. The waiting continues...

"Time goes by so fast, people go in and out of your life. You must never miss the opportunity to tell these people how much they mean to you." ~Author Unknown

NASCAR & Mr. Clean

Thought I would post a quick update. Nick is doing OK...having some nausea, vomiting and fatigue related to the chemotherapy medicines. All things considered he is doing pretty well. Nick has not been able to eat a whole lot since yesterday around lunch time; but, that is to be expected and he has basically been sticking with liquids and clear fluids as tolerated.

Nick & I just came back from a walk...he did thirty laps around the floor. We have pedometers to track our steps. Nick's pedometer had over one thousand steps, and he was walking so fast I thought his IV pole was going to pitch over onto the race track. We are renaming it the Daytona 500 (at least I am renaming it that, as I am a NASCAR fan). I am sure Nick will choose a Formula One track as he and his Dad are into the Formula One racing. Nick is a tall guy with a long stride and I was running to keep up. Good exercise for me too. We are going to bring in our yoga mats so we can stretch.

I just swiffered the floor in his room and I do not even want to tell you the color of the swiffer pad when I finished. Yuck. I swear I haven't seen a housekeeping person in here once. I keep asking Nick if they come in and clean and so far he has said no. Oh well, I have supplies and we will clean as needed. I wipe down his room every night before I leave, handles, phones, laptops, TV remote, call bell, light switches, chair arms, bedside nurse buttons, bed rails, room phone, bedside table, regular table etc. As you can see there is a lot of wiping to be done. Nick is in the shower as I right this, yeah! He is trying to do everything he is supposed to do so he can get out of here ASAP!

Tomorrow is the big day! Still don't have a time or any information on when the actual transplant will happen. I hope to find out more later this afternoon when rounds are over. I will post again tonight to update everyone. Keep the faith.

Believe

The last four days have passed quietly. Nickolas will receive his last Busulfan dose on 8/25/08 @ 0100 hours. The nurses have marveled at how well he has been doing. Nick will get his first dose of Cytoxan at 0600 hours this morning. Cytoxan is a random big gun, not too particular about which cells it damages. Nick will have to receive lots of extra IV fluids to flush the kidneys and bladder and special medicine, called MESNA, to protect his bladder from the side effects of the Cytoxan. Nick has been doing very well. His appetite has been good and he has been doing his "laps." The nurses have told him he needs to keep up with his exercise, as this really helps with the healing process. He also has to be sure to do mouth care every 4-6 hours to minimize the germiness of this area. In addition, he has to shower every day to keep the Staph and Strep germs from taking up residence on his skin.

Nick is not too thrilled about all this showering, but, he knows this is something he must do to stay healthy as possible. It takes a while for him to motivate to get into the shower, but, once he is in, he usually comes out feeling refreshed and clean!

Nick's catheter site is healing well and looks very good. Aunt Barbara is busily fixing a bunch of shirts with snaps on the right shoulder so he can run the hallways wearing his "regular" clothes.

Nick has been in good spirits...the days are long and boring already! I guess I could take boring if that was the worst thing that Nick has to deal with over the next month or so.

Don't have much to say right now...it is all a bit surreal. I am just waiting and hoping for everything to turn out ok. Just keep repeating...everything is gonna be alright!

Just Chillin'

Believe it or not, today has been a pretty good day all things considered. Nick & I arrived down at the "Hop" around 1015AM. Nick was off to get his line and was up in his room on 5B by 1230PM. The insertion site for the line is painful, but, this will subside over the next day or two. He now has two purple ports hanging out on his chest that will serve him well in the next few months. The great part is no IV sticking! All Nick's medicine and lab draws, transfusions etc. go into and come out of this double lumen wonder. The main risk of this line is infection. It must be kept immaculate and everyone who uses it must use sterile technique. So say a few extra prayers to the patron Saint of Central Lines! Nick is wearing his specially made t-shirt with the snaps that allow him to get in and out. The t-shirt was made by his Aunt Barbara (with oversight by Nurse Diane). We plan to work on the prototype while Nick is here and maybe start a new business, providing hospital adapted real clothing for people who want to wear something other than those nasty gowns.

Upon Nick's arrival to his room on 5B, (Room 14) we discovered we have a lovely view of the patient rooms directly across from us. We can look across and see in the windows of the other patients and wave. We figured we should make a sign to put in the window that says, "S.O.S! I AM BEING HELD CAPTIVE ON 5B...SEND HELP!" If you go into the bathroom, there is a great view of much of Baltimore, and Nick fully intends to enjoy the view.

After the usual barrage of test, lab draws, paperwork, orientation to the unit and more, Nick got his first dose of chemotherapy. The name of the drug is BUSULFAN and it is a very heavy duty medicine. It is meant to know out Nick's marrow completely! He has to receive seizure prophylaxis with Dilantin (a rare side effect, but, yet they still treat for it). He will have to be on the Dilantin for six days and then they will be able to take him off. He will begin his Cytoxan
doses on Day #3 & Day #4. This chemo regimen is meant to knock Nick's marrow out of commission and bring an initial halt to the manufacture of the bad cells. Later, when Nick receives the donor marrow, the donor's marrow will also "seek & destroy" any bad guys that are still hanging around looking to cause trouble.

Right now, Nick still feels good. I am looking forward to spending quiet time with Nick over the next few days. My goal is to keep him fat and happy. I am doing my best to take one day at a time. If I don't think too much about the big picture, I would say this day has been a piece of cake. I am so thankful that Nick has been able to ease into this process without too much fanfare. For now it is late and I will be heading home soon. I do not like leaving my boy here in the hospital. But, for now at least, I know he is doing OK. Until tomorrow...sleep tight and don't let the bed bugs bite.

Drink The Wild Air

Reading my favorite milblogging soldier guy...AKA Suspect, brought up the subject of swimming. And since the whole world is still all lathered up with Phelps Phan Phrenzy, I figured I would go off on a little tangent about swimming.

I have many fond childhood memories of time spent swimming. One of the best things my parents ever did was join the local swim club.
Every summer all six of us were like lemmings to the sea, literally. We lived at that pool. Spent hours perfecting our strokes..."butter, back breast, free! The freedom found in water being the best part. Pushing off the wall and feeling the water stream past. A dolphin kick to the bottom, suspended in time and space, weightless.

"Live in the sunshine, swim the sea, drink the wild air." ~Ralph Waldo Emerson

Night swimming was always the best. The air cool, the water warm, a silky cocoon enveloping us in a silent world where for a moment all was still and yet, moving at the same time. No fear, no worries, a respite for the weary. I think it has been way too long since I have been swimming.

"Sometimes God calms the storm. At other times, he calms the sailor. And sometimes he makes us swim." ~Author Unknown

Victory of the People

It is hard to believe that twenty-five years ago to day, I was very pregnant and expecting my first born son. Nick's due date was August 20th! Being the stubborn "Leo" that he is, he decided to delay his entrance into this world for an additional three weeks. Nickolas was born on September 11th, 1982. Of course, now he is officially a Virgo, but, he is still a stubborn Leo.

I am not really into astrological signs, but, they can be amazingly accurate. So on this day of his BMT class, my thoughts have turned to happier times, although eighteen hours of back labor during a time when giving birth "naturally" was in vogue, was not really a very happy experience. I strongly urge anyone I know to get the epidural! After those eighteen hours of extreme pain, it was determined that my big-headed son was not entering the world via normal pathways. No, this birth was going to cause me to have a lovely scar way before the doctors were kind enough to give you a bikini incision. So my three weeks overdue son was born on September 11th at 1930 hours. He was a big one, weighing in at 8lbs. 11oz. He was never really tiny like the little one in the picture. Nick was three months old on that day he was born, all wide-eyed and bushy-tailed, with a curious face, a very loud cry and very big hands and feet. His legendary long toes were evident right from that very first night and I found myself missing the kicks I would feel when he was cradled safely inside his Mama.

When I finally got to hold him in my arms, it was love at first sight. I remember thinking to myself, "Now I know why mothers name their children "Angel." He was my little angel, but, I thought better of naming him that. He was supposed to be a "Matthew" and he was actually without a name for two or three days. If there was a reason that we named him Nickolas, I don't remember. But, it has always suited him. The name means, "victory of the people" and Saint Nicholas was known as the patron saint of children. I still believe he is a mix of Leo (generous, warmhearted, creative, faithful and loving) and Virgo (modest, shy, reliable, intelligent and analytical). Be strong my son and I will be strong for you; between my Aries and your Leo we have enough stubborn to stop that leukemia in it's tracks. I love you forever and always.

Soul Returned

I sent my soul into the invisible,

Some letter of that after life to spell.

And by and by my soul returned to me

And answered, I myself am heaven and hell.

~Omar Khayyam ( Rubaiyat)

Leave The Light On

Better to light a candle than to curse the darkness. ~Chinese Proverb
(When we go to the hospital next week, I am going to take a night light to ward of evil spirits.)

People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is light from within. ~Elisabeth Kübler-Ross
(Nickolas and Sara are my stained-glass windows; each beautiful in their own way. They have had their share of darkness and the light within them has revealed their true beauty.)

The sun shines and warms and lights us and we have no curiosity to know why this is so; but we ask the reason of all evil, of pain, and hunger, and mosquitoes and silly people. ~Ralph Waldo Emerson
(Why must we have mosquitoes? Silly people...maybe?)

Though my soul may set in darkness,
It will rise in perfect light,
I have loved the stars too fondly
To be fearful of the night.
~Sarah Williams

Leave the light on for we will soon be home. Guide us to safe harbor and keep us from crashing on the rocks we cannot see in the darkness.

Hugs Good, Monkeys Bad

One week from today, Nick will be admitted at Hopkins. He will be having a (central line) catheter placed in his subclavian vein and he will begin his chemotherapy regimen. I am having trouble dealing with this reality right now and it seems I am unable to summon the simplest of thoughts let alone compose a coherent blog post. My mind is numb and I am functioning (poorly) in an emotional vacuum. The combined effects of late nights (Olympics watching), restless sleep, and early mornings (gotta get up, too much to do) have no doubt led to the zombie-like fog that I have been attempting to slog through.

The "to-do" list keeps multiplying like the Dugger family. Knowing that I have only five days to complete so many tasks has left me immobilized by the enormity of it all. There are way too many plates starting to teeter up there and I am just about past caring how many of them come crashing to the ground.

Getting things settled at the studio has been my biggest concern and at least with regard to covering my teaching hours, I will soon be able to put a check mark in that box. The house cleaning, organizing, pitching and preparing for "Ty Pennington" has brought the task list to "a whole nova level." I keep praying to the cleaning Gods for divine intervention.

Nick has been doing very well physically, but, emotionally I would say things have been a little rougher of late. I suspect that he is also feeling the weight of what is to come. My usually happy go-lucky son has been replaced by a quieter, more somber guy. When a smile does come to his face, I see my old Nick there. The hugs are still real good and I look forward to them each day. Sometimes, it is hard for me to get a read on his feelings and what he is thinking about all of this. I also then feel guilty that I cannot spend more time with him like I want to because I am busy spinning all these stupid plates. I guess at the core of it all that is what really bothers me the most; and the sands keep running through that hour glass so fast and I can hear the flying monkeys coming.

Happy Trails

I am happy to report that Nick has finished the first two days of his testing. After what he has already been through, these two days were a piece of cake; nothing painful or prolonged. Yeah! He met with a wonderful nurse practitioner named Valerie who gave him her stamp of approval. She was so nice, understanding, and positive.

Nick wants to go hiking and camping before he goes in for his transplant. I am not sure if he will actually be able to find the time to go. He told me he wants to go to the Great Smoky Mountains in Tennessee. I asked him why he can't just go out in the yard and pretend he is in the Smoky Mountains (see picture). I am not a hiker or a camper, so I don't get the fascination. But, Nick has always loved the outdoorsy, nature thing. So we will see what he decides to do. If it makes him happy, I will be happy for him to go, only preferably not so far away.

Things are busy for all of us. Glenn is trying to get ready for school which begins on August 25th and he will also be starting online Master's classes, just to add another layer of chaos. Sara is taking a summer course at UMBC and will soon start fall classes. She interviewed today for an internship that will pay her a stipend for school. Barbara & I are close to tying up the loose ends on the revamped DDC schedule. We have hired one teacher and hope to have two more by end of week.

We are trying to come to terms with all of this, each in our own way. It is hard to explain what it is like to be on this journey. Nick's diagnosis is difficult and the treatment will be long. As we walk together, we discover so many physical, emotional and spiritual layers we must acknowledge; each one to be unfolded and tenuously explored; finding ways to stay strong as we come to accept this that we have been asked to carry. It is very late and I must try and get some sleep. Please keep us in your thoughts and prayers. Goodnight all.

Better

The list came via email. It wormed its way into our home without fanfare. "Oh yes...here it is." And believe me, this ain't no laundry list or grocery list or wish list or to do list. Because there is nothing on this list that strikes my fancy and I am usually a lover of lists. This list will go on my list of things not to do ever again.

Day #1 -diagnostic lab studies=blood drawing in massive quantities...CT scans of chest and sinus...chest X-ray...EKG.
Day #2 - Heart scan - involves IV's, contrast dye and nuclear medicine scanning machines. Pulmonary function studies - checking lungs. History & physical with nurse practitioner and
more diagnostic lab studies. (why? Couldn't get enough the first time?)
Day #3 - More diagnostic lab studies (you're kidding right?) Grab a pencil and paper for the Bone Marrow Education Class (and there will be a quiz)
Day #4 - More diagnostic lab studies (and they wonder why people need blood transfusions), meet with more doctors and nurses - sign consents, do paperwork, search for divine guidance.
Day #5 - Go to jail, do not pass go, do not collect $200. Proceed to the CVDL (Cardiovascular Diagnostic Laboratory) for placement of your new best friend...Mr. Hickman (otherwise known as the central line through which all medicines & transfusions will go in and all labs will come out) Go to 5th floor...pick your new home for the next 30-45 days. And so it begins....

Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad. ~ Henry Wordsworth Longfellow

Rain In My Head

Rain by Shel Silverstein

I opened my eyes
And looked up at the rain,
And it dripped in my head
And flowed into my brain,
And all that I hear as I lie in my bed
Is the slishity-slosh of the rain in my head.

I step very softly,
I walk very slow,
I can't do a handstand--
I might overflow,
So pardon the wild crazy thing I just said--
I'm just not the same since there's rain in my head.

The Days Before

Sorry to leave everyone hangin' for a while there. We have all been at the beach for a few days. The latest news is that Nick has gotten his admission date for the BMT! He will be admitted to John's Hopkins on August 21st. The tentative date for "Day Zero" is August 27th. And thus, Nick's long journey will begin. Despite knowing this was coming, my stomach sunk when Nick told me he had heard from Holly. (He got the call right when he arrived at the beach on Friday.) While I am glad we have a date now and this initial uncertainty is over, I am scared out of my mind to know that he actually has to start this process and there is no turning back. Once Nick returns from the beach, he will begin his pre-transplant testing. He will be busy running back and forth to Hopkin's getting all the required tests and procedures that are necessary prior to his admission to the hospital.

I spent a restless night at the beach in a strange bed...I cried some and tried to tell myself to suck it up and deal. I am worried as any parent would be and I haven't figured out the best way to handle all this yet. My "to do" list is long and I am not able to relax much. Barbara & I are still working on hiring teachers and the sooner I can get this ironed out the better I will feel.

I will be home from the beach late Monday night. I will be able to say more at that time. I am literally on borrowed time here at the Bethany Bytes internet cafe. Time keeps on ticking....ticking....ticking....into the future.

Please keep Nick in your thoughts and prayers.

Shelter From The Storm

“The wise man in the storm prays to God, not for safety from danger, but deliverance from fear” ~Ralph Waldo Emerson

“If patience is worth anything, it must endure to the end of time. And a living faith will last in the midst of the blackest storm.” ~Mohandas Gandhi

The storm clouds gather on the outer reaches of my mind, a dark sky full of foreboding. I hear the distant rumble of thunder, a warning of danger slowly approaching. The wind begins to whisper, "Run away, run away, before the cold rain comes." I am frozen in fear, unwilling to move forward and unable to go back. There is nowhere to hide and so I will stand and let the rain wash away my tears.

I am sad tonight. I am often sad, too much thinking, too much reading, too much waiting, too much remembering. Has it only been two months? It feels like so much longer than that.

The waiting continues. We are waiting to hear that the donor has passed all the necessary physicals, testing, and questioning. We are waiting for the donor to agree to donate. We are waiting for a time-line to be set in motion. We are waiting to meet with the BMT team, sign consents, and start pre-transplant testing & harvesting of donor marrow. We are waiting for an admission date and the start of the infamous "preparative regimen" and the countdown to Day Zero.

While we wait, Nick has gotten stronger and is feeling better. His appetite has improved and he has been eating as much as possible with a goal of gaining as much weight as he can. Nick has been off to the ocean and out to dinner, reading books, and hanging out with Kate and friends. He is back to driving himself about the countryside and he gave himself a "haircut" today. Nick plans to hit the beach again this week to visit with family. The Chapa's will be in from Chicago and of coarse, we have to go all the way to Ocean City to visit with Uncle Dan & Aunt Cathy, who live only twenty minutes away.

We will skirt the edges of this storm for as long as we can. When we can no longer run, we will seek shelter in the love of family and friends.

Helplessly Hoping

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

~ Emily Dickinson

Bluebird of Happiness

~ You cannot prevent the birds of sadness from passing over your head, but you can prevent their making a nest in your hair ~ Chinese Proverbs

Ironically, I once played the part of the "Bluebird of Happiness." I don't remember any of my lines and my career in theater was short-lived.

There is a nest of baby birds in my old dryer vent. I think they are cute. I hear them chirping through the vent pipe in the ceiling of my unfinished kitchen. Music to my ears. "A bird does not sing because it has an answer. It sings because it has a song."

Nick was a trooper and came through his bone marrow biopsy with "flying" colors. It was a nasty procedure to have done and nasty to watch. Nick recovered quickly and flew the coop to meet up with some sea gulls in Ocean City. Now we wait for results...waiting is for the birds!

"Birds of a feather, flock together." At the Weinberg Cancer Center, the birds flock together for lots of reasons. Seeking care and treatment. Finding comfort in knowing you are not such a "rare" bird after all. Glances and brief nods amongst strangers, in the silence we speak. "I know what you are going through right now. It is happening to me too!" Clipped wings beat against the door of the cage. Will a caged songbird sing?

Three Little Birds ~Bob Marley

Don't worry about a thing
cause every little thing is gonna be alright
don't worry about a thing
every little thing is gonna be alright

Rise up this morning
smiled with the rising sun
three little birds
pitch by my door step
singing sweet songs
of melodies pure and true
saying, this is my message to you:

Let me know if you see any twigs in my hair, won't you?

And Flowers Pick Themselves

Today I thought I might want to get in a hot air balloon and go on a journey through the sky. I am not scared of heights and it moves slowly up and hopefully slowly down. The slowly down part being key! Seems like it would be peaceful looking down at the world from this new vantage point. Like an eagle soaring...feeling the caress of a gentle, cool breeze and finding solace in the quiet of open spaces.

Nick has been at the beach for the weekend...I am happy that he is doing something fun, but, I miss him. He reports in every now and then. He called to say he misses his family sitting with him on the beach. I told Kate to feed him lots of fattening beach food so he can gain some weight. He is going to have a weigh-in when he returns. Then maybe we will all jump into the balloon and fly away...up, up and away, in my beautiful balloon. (Flashback: Fifth Dimension)

who knows if the moon's

who knows if the moon's
a balloon, coming out of a keen city
in the sky--filled with pretty people?
(and if you and i should

get into it, if they
should take me and take you into their balloon,
why then
we'd go up higher with all the pretty people

than houses and steeples and clouds:
go sailing
away and away sailing into a keen
city which nobody's ever visited, where

always
it's
Spring) and everyone's
in love and flowers pick themselves

~E.E. Cummings

Synchronized Swimming

I know it has been a while since I have posted. Things have been busy. Back to work at the studio trying to get all the ducks in a row. (Ducks don't like being in rows much, so it takes a long time to get them to stay there.) Barbara has been running summer camp, while I try to catch up on Quickbooks and work on modifications to my teaching schedule, so I can be available for Nick's BMT whenever we get the final word. We have not heard anything from anyone. Nick's last visit to the "hop" was uneventful and his counts were good. He got his last LP and has spent the week mostly at home with the standard aches and pains. We got a call today from his nurse at the clinic. He has to go in next Tuesday for his first "bone marrow biopsy." Nick and I were both a lot disappointed that this test has thrown a wrench in his plans (once again). Nick had hoped to go to the beach with Kate for a few days, trying to plan his travel between Friday appointments. I think he is still going to try to go for a few days though.

It worries me when Nick tries to travel to far from home as he is still very weak. He continues to lose weight, despite his best efforts to eat. There is just no way for him to eat enough calories to gain weight. His nurse at the clinic said that it was OK if he didn't eat a lot, as long as he keeps hydrated. His appetite that last few days has been better. But, I told Glenn, he is like a baby bird...I have to keep bringing him something to eat every couple hours or so, or he really doesn't think about eating. Sara gives him a hard time and tells him to get off his butt and get himself some food.

I have been trying to encourage him to get up and stretch, take walks or little trips. We went to C-Mart the other day and afterwards, he was very tired and had a huge headache. The other night he went to see a band and drank a cup of coffee and he couldn't sleep and was up half the night. He hasn't been drinking coffee and he forgot about the effects of the caffeine.

I know it has been hard on him. It is just not normal for a guy his age to be lying around on the couch all day! He reads, watches TV and uses the computer a lot. So I guess I am glad he will be getting away for a little bit. He is talking about driving himself to the beach though and that will be the first time he has really driven anywhere in quite a while. We did have a good time watching the Home Run Derby and the All-Star game the past couple nights. Nick also started to teach me how to play Ma-Jong tonight. It was fun. Nick likes to play chess, but, I cannot play chess with him. Chess gives me a headache.

The bone marrow biopsy is being done to determine if his CML has gone back into what is called a "second chronic phase." It is a good thing if he is back in a chronic phase. He will have to have quite a few of these bone marrow biopsies throughout the course of his treatment, as this is the best way to follow his progress. We have not heard anything more about the donor selection process or any timeline; which makes it very difficult to plan anything and also is stressful to all of us. I guess we are all keeping a good face on things as best we can. Having all this time between sort of lulls you into a false sense of "all is wellness." But, Nick's weakened state, his thinning hair and his pale face, are constant reminders that all is not well. As a parent it is so hard not to be able to fix things. I am doing what I can right now to help him physically and emotionally; treading the fine line between concerned Mom and nagging n'er do well.

It seems that I have no happy medium on my own emotional thermostat...I am either blocking all emotions and stressing over inconsequential bullsh*t or I am crying in any number of inappropriate situations. (Like today at the bank with some poor bank lady who was very nice, but, didn't really need to deal with me and my issues!) I have accepted to some extent that we have purchased a ticket on this nasty ride and therefore, we better fasten our seat belts cause it sure as hell is going to be bumpy! Did I mention that I hate bumpy rides of any kind? I am finding it hard to keep an even keel; although, right now, we are all just treading water and hoping our legs don't give out before someone throws us a life preserver. I guess right now we are a lot like those synchronized swimmers. Above the water all is calm, serene, and under control; but, below the surface, our legs are doing some mighty fierce kicking.

Well, I guess I have rambled on enough for one night...had to make up for lost time. Here it is 0315 in the morning. Goodnight John-boy!

P.S. - Wish that was me sitting on the beach.

A Renaissance of Wonder

Glad to be home. The dancers did a great job and held their own against some tough competition. "Ring Them Bells" will now go into retirement. Nick had what we hope was his last lumbar puncture and intrathecal chemo this past Friday. In the meanwhile...

I Am Waiting
by Lawrence Ferlinghetti

I am waiting for my case to come up

and I am waiting

for a rebirth of wonder

and I am waiting for someone

to really discover America

and wail

and I am waiting

for the discovery

Of a new symbolic western frontier

and I am waiting

for the American Eagle

to really spread its wings

and straighten up and fly right

and I am waiting for the Age of Anxiety

to drop dead

and I am waiting

for the war to be fought

which will make the world safe 

for anarchy

and I am waiting for the final withering away

of all governments

and I am perpetually awaiting

a rebirth of wonder

I am waiting for the second coming

And I am waiting

For a religious revival

To sweep thru the state of Arizona

And I am waiting

For the grapes of wrath to stored

And I am waiting

For them to prove

That God is really American

And I am waiting

To see God on television

Piped into church altars

If they can find

The right channel

To tune it in on

And I am waiting 

for the last supper to be served again

and a strange new appetizer

and I am perpetually awaiting

a rebirth of wonder

I am waiting for my number to be called

and I am waiting

for the Salvation Army to take over

and I am waiting

for the meek to be blessed

and inherit the earth

without taxes

and I am waiting

for forests and animals

to reclaim the earth as theirs

and I am waiting

for a way to be devised

to destroy all nationalisms

without killing anybody

and I am waiting 

for linnets and planets to fall like rain

and I am waiting for lovers and weepers

to lie down together again

in a new rebirth of wonder

I am waiting for the great divide to be crossed

and I anxiously waiting

For the secret of eternal life to be discovered

By an obscure practitioner

and I am waiting

for the storms of life

to be over

and I am waiting to set sail for happiness

and I am waiting

for a reconstructed Mayflower

to reach America

with its picture story and TV rights

sold in advance to the natives

and I am waiting

for the lost music to sound again

in the Lost Continent

in a new rebirth of wonder

I am waiting for the day

that maketh all things clear

and I am waiting for retribution

for what America did to Tom Sawyer

and I am waiting

for the American Boy

to take off Beauty's clothes

and get on top of her

and I am waiting

for Alice in Wonderland

to retransmit to me

her total dream of innocence

and I am waiting

for Childe Roland to come

to the final darkest tower

and I am waiting for Aphrodite 

to grow live arms

at a final disarmament conference

in a new rebirth of wonder

I am waiting

to get some intimations

of immortality

by recollecting my early childhood

and I am waiting

for the green mornings to come again

for some strains of unpremeditated art

to shake my typewriter

and I am waiting to write

the great indelible poem

and I am waiting

for the last long rapture

and I am perpetually waiting

for the fleeting lovers on the Grecian Urn

to catch each other at last

and embrace

and I am awaiting

perpetually and forever

a renaissance of wonder

Things Are Not The Same

For those of you who may not know, I am currently in Florida. Despite my need to control all things in my life, I decided to go to Orlando with Barbara and the Gems dancers for the Nationals. I was urged to go by Nick and Glenn and Sarah and Kate and anyone else who thought it might "be good for me." Now I am here with no computer access, so this may be the only post I put up while I am away. I miss my family and I miss Nick so much. As one of my dancers said tonight (she is here without her Mom), "I am so homesick!" I call every day (and night) to check on Nick and make sure that Glenn is holding down the fort. He tells me I must stay at camp and I cannot come home. It is so tempting to jump in a cab and head to the airport and see just how fast they can get me back where I belong. Is this how the soldiers feel when they are deployed for 15 months....trapped, cut-off, and so sad? I know Nick is in capable hands with his Dad, his sister, and his girlfriend, Kate, but, as the "Mom" I just want to be there with him. Even though my logical brain tells me he is fine, my sentimental brain tells me I need a hug from my boy! Anyway, my cell phone alarm just went off to let me know that I need to get off the computer now or I will have to pull a bank robbery just to pay for the minutes I have been on here already. The week cannot end soon enough for me. While I love being here with all of my dancer family, things are not the same as they were and they will never be. I wish my heart was not so sad right now. I try to find joy in the simple things that surround me but, I am better at giving that advice than taking it. Peace to all who continue to pray for Nick. Please call him or come visit. I think he needs some company and well wishes! God(s) bless to all and to all a goodnight.

Haiku II

"With dewdrops dripping,
I wish somehow I could wash
this perishing world."

~Matsuo Basho

Big Wheel Keeps On Turnin'

I am not a ride person....too much of a control freak. Being pregnant with Nick & Sara were the only rides I agreed to get on. Yes, I equate pregnancy with a roller coaster, once you get on you can't get off until the ride is finished. Only on that ride, you get a baby in your arms at the end. So, yeah, I generally hate rides; but, I am a fan of the big wheel. I love being up so high and seeing everything down below and going real slow! And I like the lights too! Makes me happy. Oh and I like to make the gondola tip forward and backward too; which, all my roller coaster ridin' crazies don't seem to enjoy and I don't get that at all. You like dropping from insanely dizzying heights at 1000mph, but you will have a major freak-out if a gondola tips back and forth ever so slightly? That don't make no sense!

Today, we got some good news. While we were down at John's Hopkins, henceforth to be known as "the hop," we got to speak with one of the big wig doctors. He was very nice and the first thing that he shared with us was that the first person that has tested is a full match for Nick's BMT!!!! This is great news and I think we were all in a little bit of shock as Nick, Kate, and I all sort of just stood there and laid there and went....(gulp) OK! They will still be testing some of the other candidates and if there are other matches they will pick the best one. The other variable is that the donor can refuse to donate if they are unavailable or they have changed their mind or whatever. So that is all yet to be decided.

The process is in full motion, so it may be as soon as early August that Nick will begin his pre-testing and his preparative regimen. We were told we will have at least a month's notice, as there are so many aspects of the BMT that have to be coordinated on many levels. Once the bone marrow is harvested, it must be transfused within 72 hours. Usually, a date for the actual BMT (infusion of the donor marrow into Nick) will be set. That becomes Day Zero - Nick's new birthday (hey...I was just thinking that his real due date was August 20th, now wouldn't that be ironic. He was three weeks overdue, that his how he ended up being born on Sept. 11th).

They then count backwards from Day Zero...so all his prep happens on Day -14...day -13....day -12 etc. and you count down until Day 0 is reached. I hope this is making sense to everyone. It is great news, but, let's not get to excited just yet. The doctors make the BMT sound like a walk in the park and everything I read makes it sound like anything but, so I hope the truth is somewhere in between.

I think Nick is taking things in stride and he is asking good questions and staying positive. He still wants to go to the beach, but, he has one more LP to go, next Friday. We are hoping that he will feel much better by the end of the following week. The spinal headaches and the nausea from the chemo are keeping him from being as active and eating like he wants to...his appetite is Ok and all things considered he is doing pretty well.

And now for my pubic service announcements:
Please take a moment to remember all of the soldiers deployed around the world in service to our country, particularly those in Iraq and Afghanistan. They need to know we are with them and support them each and every day! If you really support the troops try to find a concrete way to show that you do!

Also, if you want to do something to help in general...consider giving blood! Supply is low and demand is always high at this time of year. Lately, when we go to clinic, they are always short of platlets and those needing transfusions have to wait until they can find platlets for them.

"You cannot do a kindness too soon, for you never know how soon it will be too late."
~Ralph Waldo Emerson

My Heart Seems To Wait

Here is a song I heard recently that I really liked. It is by an artist name Leeland Mooring. The song is titled, "Brighter Days." The name of the album is Opposite Way. I'd put it on my playlist, but, it is not available yet. You can find it on itunes. We are off to John's Hopkins this morning. So I best get some shut eye.

Time keeps moving on
Through the sunshine and the storm
And my dreams are set in stone
And someday I’ll be who I want to be
For now I’ll wait
For the sun to shine again
And for now I’ll wait
For the rain to pass away

And I’m looking for the brighter days
When all my hurts seem to fade away
I’m looking for the brighter days to come my way

Faces come and faces go
But none seem to look my way
And walls have stood and walls have fallen
But my heart seems to wait
For now I’ll sit at the end of the road
And for now I’ll wait
At the end of the pathway

I’ll see the sun one day shine upon me
I’ll see the sun one day
And watch the nighttime turn to morning
But for now it all comes back around

Blog On - Part Two

Now you see it, now you don't! City Girl's (Lt. G's fiance) blog content is gone now too! Her first post was there as of 0200 1-July-08. Now it is just a blank page with the title "Kaboom." Big Brother hit the delete button....again.

Blog On

Just wanted everyone to know that Lt. G's blog is GONE!!! He was ordered by his chain-of-command to DELETE it! His fiance was able to get his domain name so if you go to his blog, you will now find her updates on what is going on with Lt. G and his men.

This news comes on the heels of a NEWSWEEK article from the June 30th issue that talks about the therapeutic value of blogging (like I didn't know that already). To quote from the article, written by Jessica Bennett, "Writing is an effort of the brain to communicate for comfort," says
Harvard neurologist Alice Flaherty. "Diaries are a form of that communication, but, removed. Blogging gets you closer to that sympathetic audience, and that's what makes it therapeutic."

So by all means US ARMY....let's take away the opportunity for our soldiers to get this sh*t off their chests and get some support from a bunch of people in cyberspace who actually do care about what happens to them!!!

Yes, I am stirring up trouble. Don't mess with my soldiers! Don't they have enough on their plate with fighting wars, and PTSD, and losing limbs and increased suicide rates and losing their friends and their marriages because they have been stop-lossed or extended so many times that they haven't been home long enough to change their underwear before they are sent back!

Soldiers on their second, third and even fourth deployments have been in Iraq or Afghanistan for so long that they don't know what it is to exist outside of a war zone. So God forbid we should let them write down a thought or two about what is actually requiring them to be on the job there for the last five years.

It is late and I can rant no more. Medicinal bloggers....BLOG ON!