A Photo Journal of Nick's Cutaneous Lymphoma - The Grahams' Photo and Video Albums

Aug. 2005. Before we knew anything about the cancer!

Jan. '06. At this point, Katie and I have discovered the "bruise" on my right hamstring and I am going to see a local dermatologist to find out more.

July 2006. The original spot of cancer, called a "patch", on my right hamstring. No idea what was to follow!

Late July 2006. I have now seen Dr. Parker, the oncology dermatologist at Emory that took many biopsies to confirm what she suspected was cancer. This photo was taken the day we were waiting for PET/CT scan results to confirm the cancer. A very tense day!

Nov. '07. A year has passed since the last photo. The initial hamstring spots were taken care of with spot radiation in Oct. 2006. All seemed fine and I went back to my "normal" life. Then, "patches" and "plaques" slowly starting appearing all over my body beginning around Jan. 2007. No one ever suspected where it would lead, so for a while we tried some milder and shorter treatment regiments. But, it continued to spread and by now in Nov. 2007, it was obvious that something like a transplant was probably going to be needed.

The large tumor on my right arm was the initial "patch" that Katie noticed in Jan. 2007 that indicated the cancer was back and spreading. It, along with the other ones, continued to grow over time from Jan. '07 forward.

A close-up. Ouch! Right? Well, actually these did not hurt or have any pain associated with them at all. Only the largest one on my leg hurt when it became necrotic and either water touched it or it rubbed in my pants.

Looks like little pancakes stuck to my arm!

Dec. '07. The largest one here on my leg was so thick, that the outer layer became necrotic (dead tissue) and began to decay. Oh the smell and draining fluids . . . This is when it became very painful. How this did not freak Katie out is beyond me.

Dec. .2007 My legs started to become very swollen with edema for quite a while.

Jan. 12, '08. About the worst that things got was during this time in Jan. 2008. I was trying different chemos to halt the progress of the tumors. Thankfully, as bad as they looked, they were all still confined to the outer layer of skin and had not penetrated into muscle or bone or gone systemic. Thus, they were surface tumors that could be treated directly. My poor legs and feet are extremely swollen. The large tumor on my leg is extremely painful at this point and causes me immense discomfort. I was still working full-time at this point with the aid of medication. (I believe I had to be crazy to be working like this, but I wanted to live as "normal" a life as possible until the inevitable leave from work started and then the transplant).

Feb. 2008. Since the chemos were making my hair come out in clumps, I went ahead and shaved my head. I still have black eyebrows at this point!

Feb. '08. The swelling has gone down in my legs. I still have hair on my legs at this point! (The tumor looks this way because I just got out of the shower: as strange as it seems, what hurt more than anything was good 'ole plain WATER touching the tumor. I would scream out in the shower uncontrollably ever day! Very bizarre. But I had to clean it every day because infection was the biggest concern).

The ever-changing face! Some days swollen, some days red, some days white, and so on . . .

Feb. '08. The largest that the tumor got right before I started the 6 weeks of radiation therapy directly on my skin. Unreal to believe the human body can do this to itself?!?!?

Feb. 29, '08. The charred look of focused radiation where the machine is placed directly on top of a particularly large tumor and with a rubber medium (synthetic skin-like material) called a "bolus", it tricks the radiation waves to be directed to the surface tissue (i.e. the tumor) rather than penetrating deep into the body as it normally does and is designed to do. Thus, the radiation beams target just the tumor and no surrounding skin, bone, or muscle. However, it works REALLY well and burns the heck out of ya pretty effectively!

The massive protective door that leads to the radiation room at Emory.

March '08. The radiation machine. Most patients would lay on the table for head, neck, and chest radiation, but I stood against the wall to the left on a rotating platform. No fun.

The spinning platform of "doom"! I wore solid lead chips taped on all of my toenails, fingernails, and eyes every time. I still lost my nails anyway. I spent 20 minutes EVERY DAY for 6 continuous weeks doing this. I was REALLY a tortuous experience! I would get very light-headed and dizzy. Several times I had to make them stop and sit down with some water. Imagine being blindfolded, spinning around for 20 minutes (with a short break at 10 minutes), totally nude with a large buzzing machine burning your entire skin surface! Is there a more apt description of hell? (The radiation did not actually burn instantly, but rather built up over time within my skin cells and eventually I was in a constant state of an intense sunburn). In addition, they also did "spot" or "focused" radiation the last 3 weeks whereby I would lay on the table and they would set the machine directly over the 3 or 4 largest tumors for additional, directed radiation. But, in the end, this was the only treatment that worked and probably saved my life.

The radiation control room. The techs were very nice (and young!).

March '08. This extreme swelling (edema) is a result of the radiation. I have already tried several types of different chemotherapies by now, none which worked. Each person's cancer is very unique to what it responds to and mine, from the beginning, responded VERY effectively to radiation. I am thankful for having this available to me as nothing else was halting the cancer. However, this is the price you pay (in addition to possible skin cancers later in life!).

Poor feet were burned something fierce by the radiation. Damn.

April '08. After a lot of general and focused radiation, this monster of a tumor rapidly shrank down! Crazy to watch every day as it got smaller and smaller. The risk for infection was still very high of course, being a LARGE open wound. But I proudly took great care of it and it has actually healed up pretty well by today (2009). However, it is really weeping a lot at this point and smells quite putrid. Still just plain water touching it would send me into a panic of screams!!

April 2008 after the radiation and a LOT of chemotherapy and other drugs to try and prepare me for the transplant. A can still smile (as always!).

April 2008. I am actually able to walk a little bit by now.

April '08. Unbelievable that this was that HUGE necrotic beast of a tumor!!?? Now look at it, almost completely flat and a fraction of the size! All of this just from radiation. The lasting effects of radiation continue to kill off cancerous cells (due to their high metabolism/activity) many months after we stopped the treatments. Thus, this largest of the tumors continues to shrink over the next month or so.

The $1.5 MM PET/CT machine that I have sat in about 12 times or so at $5K a pop!

May 2008. Looking a lot better now. Waiting to heal as much as possible from the intense effects of the radiation before I have the transplant to avoid infections as much as possible. A very anxious couple of months.

June 14, 2008. My gorgeous wife Kate with Nathaniel getting ready to be born almost one month from this date.

June '08. Notice how different my face looks; much thinner at this point. Probably weighed around 189 or so at this point. I weighed 245 before the cancer! (I am now back to a healthy 210 and steady).

June '08. My legs actually look wonderful at this point (from where they were!). That large tumor is practically gone and covered with a large scab. Amazing.

That bad boy now just becoming a scab.

My poor feet with tumors on them. Really made walking quite a painful chore.

June '08. The large one here also has shrunk down to "nothing" but a scar.

July 4th, 2008. I was admitted the day before to Emory University Hospital to begin my chemo for the transplant. Showing off my Hickman port.

My transplant schedule.

The outside entrance to my "home" for the next 4 weeks.

A view of the cross walk that connects the Winship Cancer center to Emory hospital. I have crossed this bridge hundreds of times.

Emory University Hospital in Atlanta, Georgia.

The entrance to the cancer center where I have walked through probably a thousand times!

July 4, '08. Katie's Birthday!! A view of my laptop with the video camera so that I could keep in touch with Evan and Katie (particularly since no one under 6 was allowed on the secure transplant floor and Katie was very pregnant and about ready to give birth. Therefore, I did not see them very much during my month-long stay. (It was horrible. I was as depressed and lonely as I have ever been in my whole life during this time. Plus I was weak and could not get much rest since they wake you up 4 times a night, every night to check your vitals. It really was awful. And yes, the food was unspeakably terrible!).

July 4th, 2008. They stopped by and I met them in the lobby of the hospital for a little bit. My face again is changing.

July 4th, 2008. I'm happy to see Katie and Evan, but it was very sad to celebrate her birthday this way as well as have her be so pregnant and give birth all without my support or presence. Ugh. It made me so mad to have everything timed this way (originally, I was scheduled to have already had the transplant by now, but as I was preparing to get ready for the hospital, the cancer went systemic in my blood and everything was put on hold a month or so to control that. So, we pushed back the date and it was a HUGE heartbreak for me to be in the hospital while she would give birth to our second son. The first heartbreak of many to come . . . ).

July 6 '08. Already had 4 days of chemo. Actually feeling OK (as the side effects don't begin until several days afterwards).

An example of what I was supposed to strictly follow for at least 90 days post transplant.

Under that plate cover rests the handiwork of the hospital food services. At this early point I probably ate it, but as time went on I dreaded that food and left many plates untouched.

Day -2 (2 days to go until the transplant). My mom spending time with me.

The most gorgeous woman in the world! (11 days for Nate to come into this world!).

July 6, '08 (Day -2). Feeling a little lousy, although nowhere near as bad as I would have assumed.

A patch for anti-nausea, just in case. (probably "scopolamine")

Day -1. No problem keeping the weight on! I begin to loose weight from here on out as I eat little in the hospital and begin to have quite a change in my appetite as the drugs and such really begin to effect my taste buds and such. Things start to taste different and not as appealing. I end up mainly settling for smoothies, ice cream, and other soft/liquid meals for a lot of my month-long stay.

My loving, wonderful son Evan. I love him so, so much and he handles all of this with so much courage.

Day 0. July 8, 2008. My NEW BIRTHDAY!!! Thank you, thank you "Mr. Donor Man", whoever you are!

A look at how far I've come with my recessed tumors. The human body is a miracle of design.

Day 0. Holding the single bag of fresh stem cells that were flown in the night before by helicopter to the roof of the Emory hospital. They then checked that morning for any contamination, correct stem cells, purity, etc . . . All they would/could tell me is that the donor is male, same blood type (A; although that has practically no bearing on using stem cells), and in his early 20's. What a day!

I'm so skinny already and look so different than just a few months prior!

The stem cells that would allow me to live longer than just a few months!!! So bizarre.

The transplant in progress!!! (completely anti-climatic as I just sit for 45 minutes or so and have the new cells pumped into me. At this point, the chemo I received for 5 days (Fludarabine) has killed my bone marrow). No turning back now! There is always the concern that the donor stem cells may not engraft (take hold and begin multiplying in my bones) or that I could only get a "partial engraftment" and/or it could take a long time to begin working. Thankfully and miraculously, I was 100% engrafted within a month and it has stayed that way ever since! Truly a blessing of the best possible scenario.

My darling wife blessing the stem cells to do their job (that plus the multitude of prayers from friends, family, and strangers alike all really, really worked! I thank EVERYONE for their blessings and support).

The staff came in singing a version of "Happy Birthday" with this signed hat for me to wear. Really a pleasant surprise!!

Looks like we are all done! Now the waiting game . . .

A view of the Emory campus and downtown Atlanta from my room. That plus the extremely pleasant and caring service of the staff are the only 2 things that were welcome about my stay here. Yes, I have to also appreciate the fact that this procedure "saved my life" and that I am so fortunate to have access to this level of care, but believe me it was by far the most depressing 4 weeks of my life. The reasons that it was so depressing are that I wanted nothing more than to go home and be with my family, to support Katie as she nears her delivery of Nate, to be there for his birth, and to have some small sliver of my own life back. It truly felt like I was deprived of everything that made "me", "me". Know what I mean? No longer was I an HR Director, a father, a husband, a friend, a neighbor, etc. . . . I was simply a "patient" to be observed and manipulated for the best outcome according to the medical teams' data and such. I was a living experiment.

My "home" for a month. Ugh!

Day +3. My poor lips were swollen and my mouth felt horrible due to the chemo. Most people get severe and painful mouth sores.

One of the few pleasant perks of being in that jail . . .er . . . hospital room! Downtown Atlanta on the horizon.

Day + 5. I volunteered for an experimental study drug called Palifermin (trade name "Kepivance") that 50% of participants would receive. One of the most obvious and noticeable effects of receiving the drug is a VERY thick and VERY white, "fuzzy" tongue. Ummmmmm, I do believe I received the study drug! Although the researchers could not confirm nor deny that I received it due to the double-blind nature of the study, it was more than obvious that I (thankfully!!) did receive it. The idea is that it stimulates a massive over-production of the cells that line the GI tract (mainly mouth, tongue, and throat) and would hopefully significantly reduce the appearance of mouth sores as well as limit the intensity of GvHD. While it did an AWESOME job of keeping the mouth sores at bay (I only had ONE sore, under my tongue, whereas the norm is a mouthful of them, even sometimes down the throat, that can be so painful as to warrant a morphine "pain-pump!") it did probably little to nothing to help with the GvHD; which ended being a SEVERE issue that I have dealt with for the past 10 months.

July 13, '08. Four days until Nate is born!!! My miracle partner Katie is so strong and courageous as she takes on the high unknown about her husband while at the same time caring for a 4-year old, being pregnant and preparing on her own to give birth!! Can you even imagine how stressful all of this would be on someone?!?! But Katie is ABSOLUTELY amazing as she can still smile her timeless smile!

Day +7. Doing OK. One thing that was a COMPLETE surprise and of course not seen by many was the fact that I reacted so strongly to some medications by having continuous, non-stop hiccups for about 10 days!!! I am not kidding or exaggerating. It was completely awful and draining. I can't tell you enough how the simple reaction of hiccups going on and on for days on end can be maddening!!! We tried different drugs to calm down my diaphragm and it just eventually gave up! Now THAT was bizarre!!!

July 16, '08. Day +8. I'm wearing a disposable protective gown that everyone has to wear if they enter my now quarantined room since my stool sample tested positive for CMV. CMV (cytomegalovirus) is one of the most common viral infections in the world (Between 50% and 80% of adults in the United States are infected with CMV by 40 years of age). It sits silently in nearly all of us for life and only causes a problem during a weakened immune system or giving birth. I had to essentially stay in my room until we got a negative test result.

All of the wonderful well-wishes. Our son Nate is being born at 2:20 PM this day while I sit in this room :( Extremely upsetting for me. Extremely. . .

My "vision board" to help me keep my focus and intentions of what I desired. These are concepts and such of a life I desire to manifest. These are things and ideas that keep me happy and "grounded".

The inspirational posters, cards, and such that people sent. The whiteboard indicated the rotating nursing staff each day and night. After a while, it all became a blur who was drawing my blood and such. I'd wake up and there would be a different RN or tech.

The door to the hallway in my room.

Nathaniel Robert Graham is born on July 17, 2008 at 2:20 PM in Roswell, GA.

July 17, '08. After constant nagging, my doc. finally released me to go and see Katie and Nate at their hospital, an hour away from where I was staying at Emory. I stayed for an hour or so and then had to go back to my hospital room.

A VERY happy dad!!!

Nate doing his thing.

This incredible balloon was given to me by my neighbors. Along with this surprise, the staff at Emory hospital decorated my room with balloons, streamers, and such to my complete surprise and delight! They even bought baby gifts for Nate such as clothes, books, etc. Now these are people who REALLY CARE for their patients!! God bless them all. Finally, it must be noted that during many of these months our neighbors and friends rallied together and cooked dinners for our family, mowed our lawn, and took over other various chores to give Katie a break. It was very moving and welcome to have that kind of support. THANK YOU THANK YOU to everyone!!!

Mommy and baby (2 days old). Katie "the Super Woman!" Graham can still smile after everything she has been through. (Take note: this is what an angel looks like).

July 21, '08. I am finally released from the hospital after a month. To be back with my 4 day-old son, Evan, and Katie on our wedding anniversary of 7 years is pure bliss.

The Grahams. It was quite stressful for everyone, including Evan as he had to deal with both his Mom and Dad staying at 2 separate hospitals. (He was not happy that he couldn't stay with Katie overnight. However, he pushed through and was a great big brother to Nate, bringing him gifts and being very supportive). We made it through the transplant and now I'm coming home to recover, recover, recover.

The whiteboard where they would keep my updated info each day and night.

The hallway around which each patient was expected to walk at least 20 times around every day (which equaled 1 mile). I did at least 20 a day. One of the strongest correlations to survival of a stem cell/bone marrow transplant that the RNs and MDs would tell me from their experience (as well as studies) is ACTIVITY. Thus, those who stayed in bed immediately following the procedure and did little to get up and move were MUCH, MUCH more likely to not survive. I couldn't agree more and also beleive that being active is a subtle indication of one's WILLPOWER, DESIRE, and BELIEF. If you think that there is little hope for this whole process to help you and/or that you will eventually be beaten by the cancer, then guess what? you will not be very motivated to get out of bed or do much for yourself. I was fortunate to not only feel relatively "fine" physically and mentally every day, I was BUSTING out of the seams to get out of there, so I needed no prompting to get out of bed each day and shuffle around the hallway for my required 1 mile walk. Sometimes I would listen to my Ipod and just keep going around and around. If you didn't get out of bed, the nurses said that honest-to-goodness they would yell and scream at you to get up! (They told me of stories of patients who had a perfectly successful transplant, but were so depressed and down that they literally let themselves die by lack of caring! The staff don't want to see that and really care; thus they don't pussyfoot when it comes to getting patients up and out of bed).

The other loop of the hallway of the 7E wing of Emory University Hospital. It is a secure floor on which no one sick or under 6 years old could enter. (Yes, that meant that both Evan and Nate could not come visit me here. However, I was able to occasionally go downstairs and meet them in the entrance).

The board where some of the patients would track their 20 laps. I stopped keeping track once it became obvious that I needed no motivator to walk at LEAST 20 laps a day, usually more.

A record of where patients came from to be at Emory. Many were international, coming from South America and Europe just to have a transplant here at Emory. (Some spoke little or no English. This certainly solidified the reputation of the transplant center for me!).

The nurses' station on the transplant floor. These folks are so dedicated to helping their patients and did WHATEVER they could to make my stay more comfortable. Many patients were in much worse shape than me and on pain meds 24/7. One woman screamed all day for some reason. Others never got out of bed the whole time I was there. Some died while I was there I believe.

The entrance to the 7E transplant floor.

Where I would often go for really generic, yucky ice cream (the kind you would get at camp as a kid in small little white containers).

Again, my "home" for over a month. The bed was horrible (just a plastic-covered foam block). Nothing to gloat about except I had a grand view of downtown and mid-town Atlanta.

July 23, 2008. Right after I got home and was with my 6-day old newborn, Nate!!!

July 27, '08. 10-day old Nate.

July 28, '08. My Hickman catheter implanted in my chest with 3 lumens (tube connections) that I had to keep clean and flush every day. A real pain to have, although it made receiving drugs and drawing blood very easy and painless.

July 28, '08. The state of my tumors 20 days after my transplant. Things actually look really good here, especially compared to before (and after when the GvHD takes hold of me).

July 28, '08. Sexy legs! By now I have lost much of the hair on my legs, arms, and elsewhere with a few patches (like my kneecaps) of hair remaining. As I write this, there are large areas on my thighs where new hairs are trying to come up through the skin, causing hundreds of tiny little black bumps. A very good sign!

July 29, '08. Looking skinny here. I felt very weak, but overall not really in pain or anything other than the off-and-on again issues with my feet.

July 29, 2008. The Grahams are together again!!

Aug. 2, '08. Doing my best to be a "fun" dad by taking Evan to Newtown park. Post-transplant I had to follow a strict regiment of covering up and wearing sunblock at all times, not eating ANY fresh foods such as vegetables, fruits, etc... that could possibly have bacteria on/in them. Also, I could not agitate or work with dirt (like gardening) or go in the attic due to possible mold infections. I could not go to crowded places as well or eat from sample foods at malls, etc.... Any possible source of infection I had to avoid due to my depressed immune system as I am on heavy-duty drugs ("Prograf") that actually PREVENT my new immune system from being active?!? The reason was that we needed to give my body and the donor cells plenty of time to get to know each other! Therefore, I am actually MORE susceptible to infection now that I was prior to the transplant! Crazy. huh?

Aug. 31, '08 with 6-week old Nate. Actually feeling OK at this point.

Sept '08. Looking good, especially compared to what my skin looks like today after 10 months of severe GvHD. The Hickman catheter is looped up into my main artery and ends just at the aorta directly to the entrance to my heart. Really freaky to contemplate that!).

Sept. '08. So skinny here but alive and happy with my sons.

Nate eating my nose. Give it back!!

Nov. 2008. The largest tumor, which looks FANTASTIC here! Amazing that it has healed so well.

Nov. 10, '08. One of the concerns after the transplant was the fact that I had some painful tumors on the soles (and toe) of my feet that were NOT irradiated since I STOOD UPRIGHT on the "platform of doom" during the full-body radiation treatments. Little did anyone know how intense and long-term of a real problem this would end up being 6 months later (after we did 9 focused radiation sessions directly on the bottoms of my feet).

The other foot for comparison. There was some tumor activity in the arch, but now gone.

Nov. 25, '08. The affected second toe from a tumor that has come about, showing that I have a relapse now of my cancer. It also showed up in a very small patch on my left arm that Katie noticed (she's quite good at doing that!). After 2 biopsies, it was confirmed that my arm spot was in fact the CTCL coming back. Crud. Up until now I have been on Prograf, an immunosuppressant that has kept about 75-80% of my new immune system from being "activated" so that we can gradually allow all cells to become copacetic. Therefore, it is not a surprise to the docs that I have had a relapse given that we have not allowed my new cells to really go to work. Given the aggressive nature of my cancer, a major decision is made to completely take me off of all Prograf immediately; whereas it is more desirable to taper off of strong, influential drugs such as this. Now we will let nature take its course and have the new immunity "go to town" and (hopefully) attack the cancer (and not me!). The following 10 months prove this decision to be highly influential on the quality of my day to day living as we shall see.

Nov. 25, '08. Day +141. The leftover burned spots where the cancer was.

Dec. 5, '08. The beginning of my liver failure. After stopping my Prograf "cold turkey", the donor cells came out of the gate full force and while they did their job of clearing out the relapsed cancer in my arm and toe, they also went straight to my liver and caused inflammation and, in an unknown way, have also caused liver failure. I am admitted to the hospital here shortly as my bilirubin counts start to climb rapidly (a rough indication of liver function).

Dec. 14, 2008. I am now admitted to Emory Hospital due to rapidly rising bilirubin levels (an indicator of liver function. Normal is 0.3 - 1.4 or so and mine was about 12 and DOUBLING every day!! A REALLY poor sign that indicates my liver is failing fast). My skin and eyes have started to become jaundiced from the bilirubin travelling throughout my blood stream and not being excreted by the liver properly. Also, my urine now begins to turn from yellow to a dark amber "iced tea" color more and more every day. The urine eventually looks almost like BLACK INK!! Insane.

Each day that I am in the hospital, by bilirubin counts double! I have a whole liver team of specialists look at me plus many other concerned doctors. By the third day Katie and I are told that there is little that they can do at this point and out of desperation they give me an infusion normally prescribed for Crohn's disease called "Remicaid". This could decrease the inflammation in the liver, but takes at least a WEEK to begin working. Therefore, not only is the effectiveness of the drug a total unknown, it wouldn't even be any help until after a week or so! Until then, they say there is nothing that they can do.

Katie and I are told to make "final preparations and arrangements" for my possible death within the next few days. My family all flies down and it is quite an emotional time as I face my mortality and the real possibility of dying from liver failure any day. A Catholic priest comes by my hospital bedside and I take communion, anointing of the sick, and reconciliation (although I am not Catholic, yet). It is all very surreal and extremely upsetting, but I still just "go with the flow" and keep the faith that all will be alright. My oncologist Dr. Lechowicz comes by at night and we have a very causal "heart-to-heart" as 2 people, not doctor and patient.

The next morning my bilirubin counts had FINALLY started to come down, if only slightly! An honest-to-goodness miracle if there ever was one! I attribute this life-saving turnaround to faith, belief, and prayers. My oncologist came in that morning fully expecting me to be in a coma with encephalitis (swelling of the brain) with little hope for recovery. According to the lab results, my bilirubin of the night before at around 39.5 or so was considered by basically all medical professionals to be a "death sentence" as a liver transplant was impossible, the Rimicad wouldn't take effect yet, and even my doc mentioned earlier that she had most of her patients die when their bilirubin hit around 15 (as of the night before, I was at 39!!!!!). Ironically, given the seriousness of everything, they actually dismissed me to go home after only 3 days in the hospital as they didn't want me to have a risk of infection by being in a hospital!! Since my counts were now going down, they sent me home to continue medications on my own.

Dec. 16, '08. At home now, while the liver counts are going down slowly every day, they are still extremely high and the jaundice actually gets worse for a while as there is a delayed peak onset.

Dec. 16, '08. They put in a "tunneled PICC" line in my arm for me to give myself a home IV infusion of "posaconazole" (anti-fungal for the liver also called "Noxafil"). (For a tunneled PICC line, they also cut a hole in your jugular vein in your neck to guide the line under your collar bones and down into your heart; thus the gauze patch on my neck, FUN!).

Inside the bag around my waist is a compact, battery-powered IV pump with a line running out of the bag (seen hanging down to the left) and up into my arm PICC line. I first had to run a bag of saline (by gravity drip from an IV pole) for an hour, then another 2 hours of the medication through the pump. Then I had to clear the lines with saline and heparin flushes every night to maintain them.

Dec. 17, '08. AHHHHHHHH!!!! Jaundice at it's prettiest (ugliest?). This is what a failed liver does to one's body; it can not process the bilirubin, which then accumulates in the blood and has a yellow tint to it. Takes a LONG time to excrete all of it, even after the liver begins to work effectively again.

Dec. 21, '08. I am absolutely thrilled to have made it to Christmas! I desperately wanted to live at least until Christmas to be with my boys, and although I look like I fell into an orange day-glo vat of paint, I'm alive, conscious, and with my family at home!!

Dec. 22, '08. My liver is still slowly improving, much to the amazement of my medical team!

Dec. 22, '08. Wow! My body has changed SO much. Much more skinny and of course, jaundiced.

OK, believe it or not this is NOT an edited photo! This is an actual photo of my real eye color! (I will admit, however, that without the flash of the camera and such, they look less intensely yellow under normal conditions).

Dec. 29, '08. The beginning of the intense peeling, redness, and pain from the recent radiation treatments about a month ago. Essentially 2nd degree burns on the bottoms of my feet. Really, really painful and one main reason I began taking stronger pain medications at this point forward (the other main reason was that the GvHD also made my skin so tight and "sandy" feeling that even turning over in bed was quite an exercise). Again, the reason for the radiation on the soles of my feet was that during the full-body radiation treatments a year prior, we did not do the feet since I STOOD on the spinning platform. Since the relapse recently was on the underside of my toe, I was adamant that we complete the radiation by doing the bottoms of my feet. (I was told that while this was recommended, that it would hurt like hell and not be fun at all; oh how they were right!! Ten-fold, I'd say).

Dec. 29, '08. Not such a pretty picture. The skin becomes so thin over time that during the next several months that the skin on my feet and ankles look like plastic wrap (and you can actually now see veins underneath the skin. Good grief).

What really hurt when trying to walk were the edges of my feet; so tender. By now I was trying all sorts of different sandals, socks, lotions, etc... in an attempt to lessen the discomfort and try to walk.

Where I would go for chemotherapy treatments at the Winship Cancer Institute at Emory. Usually ALL DAY events; 1 hour to wait out in this reception area, then usually 4-6 hours sitting in a chair receiving the IV infusion chemo drugs, then sometimes an hour wait afterwards. However, the reason I usually came to this reception area was to sign in for blood labs to be drawn next door. An awfully slow, and oftentimes chaotic environment where things would go wrong on any given day.

The reception area for where my medical team is in Hematology / BMT. I have gone to this desk and paid my doctor co-pay of $25 probably once a week for 2 years.

My second home for the last 3 years. Winship Cancer Institute, on the Emory University campus, 25 miles one way (40 minutes). I have driven this route 1-2 times a week for at least 2 years, averaging every 5,000 miles JUST to go to my doctor and treatment appointments per year. (Thank goodness I drive a Corolla and get decent MPG!).

Jan. 14, '09. After many layers of peeling. I can now sympathize with burn victims in a small way. This process continues for the next 5 months or so!

Jan. 14, '08. Look at those chicken legs!! While certainly the skinniest legs I have ever had, at least they are cancer-free. The brown spots still remain as of today as signs of where the tumors once were.

Jan. 16, '09. Me and my dose of home IV infusion therapy. A battery-powered pump in the bag around my waist connects through a line into a catheter in my arm to deliver an anti-fungal drug to keep my liver calm. Did this for a month or so at home after I had liver failure that very nearly sent me to "meet our maker"!

The cornucopia of pills!! Most of these I have to take everyday as a result of the high-dose and long-term use of steroids that suppresses my (new) immune system.

Jan. 29, '09. Some swelling left in my face, although not bad. At 40 mg prednisone a day and liver counts improving all of the time.

Feb. 5, '09. The beginning of my photopheresis treatments at Emory Hospital. This is the small room with chairs all along the perimeter where various blood treatments are done (plasma separation, stem cell collection, blood donations, etc....).

The photopheresis machine. On the right is the centrifuge the spins my blood into 3 separate categories: red blood cells, plasma, and white blood cells (called "buffy coat"). The white blood cells (my immune cells) are then "activated" for a period of time by adding a solution called "psoralen" that makes the white blood cells hyper-sensitive to UV light waves (the solution is extracted from natural plant sources like figs, celery, and bergamot). Then the nurse closes the lid on left and UV light bulbs are exposed to the white cells. Apparently, this "calms" down the cells and makes them not so hyperactive. The intended end result is that: 1) This will have a similar effect and the ability to eventually replace steroids, but with NO side-effects (other than having to wear "grandma shades" and stay out of the sun for a few days until the psoralen is out of my blood since it can make you so extra-sensitive to UV rays that one guy got a sunburn on his face from his computer screen!!), 2) it is also used exclusively to help other patients in reducing scleroderma (which I have some of on my arms and back), and 3) this treatment is FDA-approved specifically to help treat CTCL!! So, in many ways this is a 3-hit wonder for what I am going through, the downsides being that it is such a SLOW process that can take a year or so.

Feb. 5, '09. Here I am during my 3 hour sit. You can see the light bulbs on the underside of the hinged top. Also, you can see the bags hanging on the front of the machine where the 3 different components of my blood are stored. After the procedure is finished, they manually return my red blood cells to me through the same needle in my arm. This treatment has been around for 10-15 years and apparently they just came out with a new model that only takes 1.5 hours as it has 2 lines instead of 1. (But Emory has not purchased them).

I am supposed to not move my arm at ALL for the entire 3 hours so as not to disturb the large-bore needle in my arm. Yes, every time they have to stick me! (Apparently you can not use a port, catheter line, or anything permanent left in your arm). The insane part of this treatment is the TIME commitment. The standard protocol is to go twice a week for several months at 3 hours each time (plus the hour drive there and back, thus totaling a 10-hour commitment per week!) then to every other week, twice a week. You taper down over a 6-month to YEAR timeframe for a complete treatment period. Since they only extract 3% of my blood cells each time, it is a very gradual process, but apparently can really, really help over time. SO glad that insurance covers this long-term, expensive care (about $2,500 each day and I've gone already about 50+ times!).

The removed centrifuge at the end of the treatment. Here is where the nurse manually gives back all of my red blood cells (some folks chose not to do this since their hematacrit level are high enough not to need the extra blood. My levels have always been low, so I do choose to take the time to receive it).

Feb. 20, '09. Where the 2 arm PICCs were in addition to the circle of focused radiation treatments to remove that very large tumor. My poor skin has ended up super-thin and bruised something fierce. (You can even see through the skin there and see my veins right under the skin. There is some talk of plastic surgery after everything is healed to help repair the skin).

Feb. 20, '09. An ongoing series of photos reflecting the healing of my largest tumor area and how things have improved.

March 17, '09. Not looking too bad now. My liver is still slowly improving each day and the labs results continue to improve.

April 5, '09. Swollen feet from GvHD that are once again extremely painful and unbearable. I am pretty much unable to walk for a month or so (again). This time my feet are apparently going through the EXACT same symptoms as when they were radiated back in Nov., 08 due to a very strange phenomena called "radiation recall" whereby after having radiation on the skin, at some point after (even months or a year or longer!) the onset of GvHD can reactivate the effects of the radiation, EVEN WITHOUT HAVING ANY RADIATION RECENTLY!?!? Thus, I had to endure months of extreme pain, peeling of the skin, edema, inability to walk properly, and losing of my toenails all over again! Ugh. This has almost been the worst out of everything because it has gone on for about 6 months or more. Truly a chronic issue that effects my whole day, every day!

April 12, '09. Getting ready for our Easter meal with family. Looking good (but I sure didn't feel good! I was on crutches at this point).

OK, a bit too much of a close-up I know, but here you can clearly see what not just radiation can do to the skin and nails, but "radiation recall" from an intense onset of GvHD. Crazy!

The peeling continues and cycles through many, many rounds of losing skin.

April 20, '09. My eyelids and eyebrows suddenly started coming in with hard, white hairs!?!? Literally happened within a week or so out of nowhere!? Also, on my face appear very fine/thin, very white hairs where there really wasn't any hair prior. Odd. A medical mystery that stumps my medical team, but most everything that I go through they have not seen before! Although they do believe all of this is more than likely vitiligo (what Michael Jackson had) and to some degree could be permanent.

April 20, '09. You can kind of see how the GvHD has caused my skin to be very tight, especially on the left side of my leg. The dark circle where the tumor was shows how well it healed up. Unbelievable how far I have come!

May 4, '09. The insane gathering of my daily pills and such. The bowl on the right is filled with past prescriptions that I no longer take (probably worth around $10,000 since one bottle alone of Targretin is several thousand dollars for a month's supply!).

May 4, '09. Within the last few weeks my skin suddenly started to change drastically in appearance to new, white spots, set against the brownish "old skin" (this also coincided with my eyebrows and eye lashes turning white; as my doctor suggested, perhaps those hair follicles became affected with the hypo-pigmentation as with the other spots on my skin and therefore turned those hairs white?). This look and process of my skin changing colors continues to this day, probably vitiligo.

May '09. Skinny, but cancer-free legs.

May 5, '09. "Old man Nick". The vitiligo, malasma, and everything else have made me look 10-15 years older! (For the record I am 38).

May 18, '09. A good shot of what the rest of my body looks like with the white spots. Apparently, the white spots are new skin tissue that the donor cells have stimulated to grow, I suppose replacing the older, brown skin that was damaged by the GvHD.

May 24, '09. You can see how the steroids have made my face much puffier here. (We are celebrating our renewals of our wedding vows in the Catholic church).

June 1, '09. The change in my skin continues to get more extreme. My "new skin" is not only white, but takes on a pinkish tone on my face. Looks like I spilled chocolate milk on my chin!! Nate is being himself :)

June 26, '09. The changes in my skin and hair continue. By now I am also dealing with severely dry eyes which require constant attention.

June 26, '09. Strange how my scalp is white all over.

I used some malasma cover-up on my face. Not the greatest job, but does lessen the extreme differences between the two colors from a distance. However, it looks too bizarre for me and is too much trouble for not a great result so I rarely put anything on.

One problem is the obvious difference between my face and my neck color! Not sure how to address that?? So, I just don't do anything and don't bother with the cover-up anymore.

June 29, '09. Out with the kids on the Greenway in Alpharetta.

July 5, '09. My face continues to change. The darkened areas under my eyes really stand out now and the GvHD in my eyes worsens,.

July 5, '09. "Spotty Nick"! ;)

So strange how the patches of skin have changed. (I recently had my eyebrows and eye lashes dyed a dark color for a more natural look. Nice job and it makes me feel less "sick" when I look in the mirror).

July 5, '09. My feet are better, but still going through cycles of peeling and such. (I still go through several days a month where I limp from the intense pain on the arch of my right foot).

The other foot is not so bad most of the time.

The hands and a good shot of my new "Perry Ellis" underwear.

Aug. 6, '09. While it may be difficult to appreciate, the skin on my hands have changed so drastically. They are now very wrinkled, spotty, and "plastic-looking". The effect over my whole body really makes me look like an old man!

Aug. 6, '09. A close-up to show how the nails have now grown with deep ridges and have become very brittle, and soft. I had unremarkable nails before; smooth, uniform nails and cuticles. Now, they grow very uneven and essentially are falling apart as they begin to fall apart. Probably due to the cGvHD as well as prior radiation exposure and drugs.

The other fingernails also showing the breakdown of the nails. Should recover at some point in the future.

The toenails have had a much worse fate and have not grown back yet. What has been left is just the nail beds without any nails growing as of yet. (I've had a few heavy items fall on my big toe and believe me, without a nail the effect is quite startling! Once, I dropped a dartboard across both big toes at the same time and cracked both beds of skin! Not a pretty sight!).

Aug. 8, '09. Where I am today! Much has changed, but I am actually doing OK and all things considered, have beaten all odds and I see my future as bright!

"Miracle Man" :)