There’s No Place Like Home

I have been “free” from the hospital for a week, following my stem cell transplant for Hodgkins Lymphoma, although that has not meant free flowing good times and carefree living for me. My physical condition seemed to deteriorate after leaving the hospital and Wednesday was a lost day. By 1PM, I had surrendered to spending the rest of the afternoon in bed. I got up briefly to eat a small dinner and then went back to bed just before 7PM and stayed down all night. Thursday morning, I knew within 10 minutes of waking that nothing had improved. I was like a zombie. Every sense was mis-wired, every slight physical movement a complete annoyance and all I could think about was going back to sleep. Maybe a tiny hyper efficient fold of brain matter stood up and made a declaration to my mouth, or maybe someone in the house suggested it to me, but I called the hospital and got in touch with one of the cancer nurses and explained the situation. She promised to talk to one of my oncologists and call me right back. I didn’t wait for the call, and signaled my dad that we needed to go there, to the cancer center. Ten minutes later, my cell phone rang in the car, waking me up, and confirmed that we had made the right choice. The doctor pulled some blood and determined I needed fluids. They explained that the engraftment process sucks an enormous amount of fluids. I had been drinking, but not enough. This had not been an issue in the hospital because they automatically gave me a liter of IV fluids every day. But three days at home, with just my own intake of sipping water and gatorade, interspersed with hours of napping at which time I was drinking nothing, had not been enough. I felt much better after the fluids and have diligently kept up with a minimum of 64 ounces of fluid intake each day since then.

I really meant to write this post on Friday, because I still felt awful. I wanted to write it while I felt bad, because I wanted a reminder for the future of how I felt at that point. But the fact that I felt awful won out and that evening, after Dominic was asleep and I would have had enough peace and quiet to write, and I just went to bed. I think in a healthy human being, we are programmed to not quite forget pain, but to allow our brains to minimize pain and suffering, and focus on the good that can and does grow out of that pain. Why else would women agree to go through childbirth a second, third or fourth time? That is how this experience has been for me. I can already feel that as my recovery progresses, I am letting details of the suffering slip away.

Two or maybe three days ago, I was sitting at our kitchen table with my mom, and her phone rang. I didn’t know who was on the other end, but like most inbound phone calls lately, the first topic of the call was me. I heard her say, “Oh, he is doing really good,” presumably to a question about my current state of health. At that moment, I secretly considered grabbing the phone from her and telling whoever was on the other end, “That was a lie, I feel like shit.” Of course I did not do this, and I completely understand why my mom said what she did. I was looking and feeling far better than I had been just 24 hours before. Compared to where I had just been, I WAS doing really good! Granted, I was not feeling as good as her, or you, or anyone else I saw that day, but for a guy who very easily could have still been hospitalized, I was doing really good. But in that moment, my clouded, tired, weary chemo-hangover soaked brain, I did not feel like I was doing really good. And honestly that is how I felt all week…not enough energy to really even think rationally most of the time.

So, that is the bad news. The good news is, I was alert enough to recognize the benefits of being home. Let’s revisit that story in the above paragraph because there is much to celebrate just in those brief moments I described. 1.) I was sitting at my own kitchen table, not at a little wheely tray table that hovers over my hospital bed. 2.) My mom was able to say I was doing really good because of the improvements I had made. 3.) I was with my mom and not a nurse (no offense to the outstanding nurses at Emory who I know may be reading this, but Mom trumps Nurse…you understand). Being at home has it’s own challenges, but being able to eat real food, and sleep in a real bed, and not get vitals and blood taken in the middle of every night is so worth any little challenges.

And finally I have to report that over this weekend, I feel like I have turned another corner and started making significant improvements. Saturday was the first day since coming home that I felt like I had really taken a noticeable step forward. I took no nap during the day, managed a variety of simple activities including playing outside with Dominic for about an hour and ate a pretty normal dinner. Forgot to mention earlier, I have had almost no appetite and even when I do, I have had a very limited variety of foods that are acceptable to my mouth. So, I was happy with Saturday. And when Sunday dawned and it turned out to be a gorgeous day, I suddenly had a craving to get out and do something. I guess it was a case of cabin fever. So, Mom, Dad, Dominic and I packed a cooler with lots of fluids and a few snacks and headed out for a Sunday drive. We left Angela at home for a quiet afternoon of continuing progress on the bathroom project. Our destination was north Georgia and we visited the little historic town of Dahlonega where we got a light lunch, and then we drove down a scenic country highway to Amicalola Falls State Park. I gave an effort to walking the basic trail up to the base of the falls but probably only made it about 200 yards up the trail. It started getting steep and I had a suspicion we were nowhere near the falls yet, so we gave up and returned to the car. Even with only a tiny fraction of the normal amount of exploring I would have wanted, it was still a great afternoon to get out with my little buddy and enjoy some fresh air and pretty scenery. Thanks for driving Pappa!

I feel that the worst is now behind me and that each day will be an improvement on the last. Gosh, it kind of sounds like I am starting to wrap up the Hodgkin’s Lymphoma story! Not quite yet. There is still a lot to do and I am not considering any of this over until they give me a PET scan that proves it. That won’t happen for another two or three months.

I’m Going Home!!!

Sunday morning I woke up when the Physician Assistant came into my room just a little past 7AM. I was still sleepy when she asked, “Do you want to know your counts?” Sure, I said. “Your white blood cell count is over 5,000.” That statement instantly wiped all the sleepiness from my brain and body and I sat right up in bed and stared at her with disbelief. But she kept right on going, “If Dr. Langston is okay with it, would you be interested in going home today?”

The next two hours I paced the room and the hall feeling like an over anxious dog who has just been told he’s going for a car ride, but nobody has let him out of the house yet. We had to wait for Dr. Langston to arrive. When she did, she confirmed the plan with a few simple instructions. Unlike the original plan, I am going to keep my trifusion catheter hanging out of my chest for now. She wants me to keep it just a few more days, but I will probably get it removed on Wednesday. That’s a very small price to pay for going home a full day earlier than when I have been hoping I might go.

I have packed my bag, gathered all my supplies and I think I am ready. Angela and Dominic are on their way here right now to get me. This is so exciting it does not even seem real. 16 nights in the hospital, 6 days of chemotherapy, countless hours of being hooked to various IV drips and in one hour, it will all be a memory. My bone marrow transplant is complete!

Bone Marrow Transplant – Day 16

Yesterday I woke up to some great news. My white blood cell count was just a tad over 0.3. It was just enough to prove that engraftment of the stem cells has definitely occurred within the bone marrow and that those stem cells have begun their loyal job of rebuilding my immune system. With that development, I was taken off a lot of the IV drips that have been my round the clock companions this week. Then Dr. Langston came around and told me that she was also pleased with the news and told me I should get outside and go for a walk. This was the first time I have been outside since the previous Friday. It was hot, but it felt really good to breath outside air.

Then today, I woke up to even more good news. White blood cells more than doubled in 24 hours to a level of 0.7. That was measured at approximately 11PM on Friday night. I didn’t hear the results until morning, which only leads me to think that right now, the counts are even higher. Part of the boost came from the fact that I was given a Neupogen shot yesterday, which is a medication that stimulates growth of white blood cells. If I get another one today, I could be looking at a much higher count by tomorrow morning.

I am feeling better but still weak. I think my biggest problem right now is boredom. I have been here for 16 days and I am pretty tired of the routine. The bed is not bad, but it is uses a strange air supported system that I think is supposed to conform to your body as you lay on it. The problem is that if you shift your position, the mattress takes about 5-10 minutes to let go of the other shape it was in, so it winds up feeling like I am sleeping on lumpy random piles of forest floor debris. I am also anxious to be free of the responsibility of measuring all of my pee and keeping a log of when I go and how much I made. I am tired of looking all the way up the ceiling in this small room to see the TV. The only real comfortable way to watch the TV is to lay flat on my back and look at the ceiling.

I have officially abandoned the hospital food. There is now a sign posted on my door that says, “Do not deliver meal tray to patient.” I have decided my little collection of apple sauce, pudding, gatorade and the soups and cereals available from the floor kitchen will be sufficient to sustain my little appetite until this is over. I am hoping to go home on Monday.

Bone Marrow Transplant – Day 13

This is Angela, Dan is feeling too weak and tired to write so he asked me to update the blog tonight. Dan is in what is referred to as “the basement period”, where his white blood cell counts are so low that they cannot be detected. The normal range for white blood cells is from 4-8 (I believe that means 4,000-8,000), but the lowest that can be detected is 0.3 (300 cells). In the basement period, also referred to by Dr Langston as the miserable period, he would have less than 300 white blood cells. This is expected to last about 4-5 days, and during this time he will feel very weak, tired and sometimes nauseated. Even the smallest task like eating or taking a shower can take major effort and typically require a lot of rest immediately after. He is expected to be here at Emory for another week or so. If he is feeling good and his counts are up, he could possibly go home as early as Monday, the 13th, but the projected date as of now is Wednesday, September 15th.
A lot of people have been asking what happens once he is released from the hospital, and some have asked how they can help. Here is what I know as of now…
There is a critical time period of 30 days after the transplant when he must be very careful about exposure to germs and other harmful bacteria, spores, chemicals, etc. (I think MARTA should be on this list as well). If he is in public during those 30 days (Until October 1st), he should be wearing a mask and he should limit the number of people he comes in contact with. Visitors are certainly welcome, but please wash your hands immediately upon entering the house, remove your shoes in the foyer and do not visit if you have been exposed to anyone who has been sick. Our friend, neighbor and pediatrician, Dr. Bergman, also suggested that anyone who visits should have received a flu shot (not the nasal spray which is a live virus). I think this is pretty good advice, considering the circumstances.
For 3 months following the transplant (or until December 1st) he will still need to be cautious about exposure to germs bacteria and spores, but his body will be steadily recovering. During the 3 months post-transplant, he will be on a restricted diet and will not be allowed to eat any raw vegetables, fruits that do not have a thick peel, undercooked meats and of course, sushi or rare cooked fish. Fortunately for him, he will also not be able to do any cleaning or yard work for 3 months (hmm, that is the one thing that he has not complained about). So that is about it. We should resume a “normal” life by December (ok, anyone who knows us knows that our life is anything but normal even on a good day).
Dan’s parents are staying at our house to help out with everything for now, and that has been great. They will likely stay for a few more weeks to ensure that we have the support needed while he is recovering. They have been really helpful in sharing some of the responsibilities that we have day to day. Once they leave, we could certainly use some help in many different ways from yard upkeep, to play dates for Dominic, to preparing meals that are suitable for Dan to eat.
By the way, I wanted to really thank all of the incredible friends, family, neighbors, co-workers and even strangers who have sent well wishes, expressed concern and offered to help. We are so incredibly fortunate to have an amazing support system and we could not be more grateful. Dan has really enjoyed having visitors at the hospital to help pass the time, and loves playing scrabble and backgammon online with those who cannot be here in person (at least when he can stay awake). Thank you all so much for your time, kindness and generosity.

Bone Marrow Transplant – Day 10

Hard to believe I have been in the hospital for 10 days. Have not seen my real home in 10 days, not driven in a car in 10 days, not done anything really normal in 10 days. Although strangely it does not seem like it has been a terribly long time. I think that is largely due to the limited decision making role I have assumed in these 10 days. There is not much I can control in this process. My personal space is an 8×12 hospital room with uncomfortable furniture and bad lighting…well, okay not bad lighting, but it’s always either to dark or to bright, I cannot find the middle ground. And everything is scheduled out for me. Somebody brings a meal on a tray 3 times each day, I am expected to take medication at the appropriate times, and another support person cleans my room while I am out walking.

The past two days, before today, were nice days. I felt well. The chemo was not getting its claws into me just yet, and I had real nice visits from my neighbor Steve on Thursday who came by the hospital to drop off some reading material for me and take me to a real lunch in the food court. Thanks Steve. And then on Friday evening, a surprise visit from my old roommate, Matt Martin and his wife Olivia. I was not expecting them at all, but they found me in the maze of the hospital campus and we had a real nice time walking outside and catching up on the many years since we last saw each other. It was really nice getting outside the hospital walls to walk because the weather seems to have taken a favorable dip in temperature. I probably walked 3 miles or more between Thursday and Friday.

Today, Saturday was a different story. I have not left my floor or the 8E BMT unit. Remember, the path I am on dictates that following the chemo, my condition will continue to decline until I hit the absolute bedrock of my health…0% immune system. Then, the stem cells can begin to regrow. One of the main indicators of the decline is the number of white blood cells in my blood. On Thursday, that number was 8.4, on Friday, it was 4.5. This morning when I awoke it was 0.9. So, we can see that it is falling fast! And that is good news to me. I would rather just go right over the cliff on this thing and get embroiled in its full hell so that I can get on with being done with that part. Mitzi was my nurse this morning and she was also encouraged by these numbers and expects me to hit the bottom tonight or tomorrow morning. Mitzi by the way is my favorite nurse here at Emory. I will explain more about her in another post in the future. My head is a little cloudy right now to follow to many storylines.

My parents came this afternoon and helped me to strategize a list of foods I would be willing to eat, and also which are on my “allowed” food list, now that I have been turned over to the “Bacteria restricted menu” at the hospital. We came up with a few options and they ran to Kroger for me. During their absence, my bowels came full circle from last week. Most chemo, and all the chemo I have ever received has done a sterling job of constipating the bowels. I think I heard of it referred to by another patient as mind-bending constipation. And this lasts for days. Pep talks and exercises don’t seem to matter. Despite every muscle in your abdomen telling you that you must get the job done, the key muscle group in the process refuses to cooperate. Well, the final chemo I received has the opposite effect and it has been gradually loosening and softening the process much to my relief. But today was like a bad chip shot, I went from one side of the green (or porcelain) to the other, and found myself in a fit of diahrea. The doctors were really excited about this development though. So excited that they have brought me a special fitting for the toilet and they want their own sample next time it happens. Like I said at the beginning, very few decisions for me to make around here…everything is planned out for me.

My parents also taught me a new card game today that I think I could be good at. It was hard to tell if I was playing well because all day long I have felt like my head is in a bag and my real thoughts are being restricted. I think it is the fatigue of the bottoming out process. I am done with my dinner and I think I will pick another movie out of Netflix to watch on the computer and then I am done for the night. I hope everyone else is having a fun, warm and safe Labor Day weekend.

Bone Marrow Transplant – The BIG DAY

I am mostly going to skip over my review of day’s 5 and 6 because they were almost identical to 3 and 4.  Wake up, take lots of pills, walk laps around the floor, get chemo at 10AM, take a little nap, go outside, have dinner, take more meds, get chemo again at 9PM, try to sleep, do it again the next day.

Tuesday was my last day of chemotherapy, hopefully forever.  It will take a complete relapse to get me back into a chemo drip again because we are moving onto the recovery phase.  I woke up early this morning for transplant day, September 1, and got myself showered, shaved, dressed in fresh clothes and went straight to work.  I was busy on the computer all morning until Angela arrived at about 10:45 AM.  We chatted for a few minutes before the nurse came in and gave me intravenous injections of liquid Benadryl and Ativan and that brought the efficiency of my morning to a screaching halt.  The first thing I noticed was a cool and calm sensation running down my arms, and then the room twirled around a few times, and when a knock came at the door, I was pretty certain it was going to be Willy Wonka (Gene Wilder, not the newer stupid version), strolling in with his purple velvet smoking jacket and walking stick offering me a big slab of chocolate mushroom.  But it was just my nurse du jour, Mitzi, who is pretty cool in her own right and almost certainly more experienced at transplants than Willy Wonka.

I moved to the bed at that point because it seemed like the safest place and that is where my video begins.  I’m sorry the audio is not any better.  I was sort of mumbling and talking a little incoherently.  The heavy drugs have nothing to do with the procedure itself which is 100% painless.  You might here it discussed briefly in the video that there are preservatives added to the stem cells during it’s storage that can cause allergic reactions.  So, the recipient is given a heavy shot of the benadryl and ativan right before receiving the cells to counter act any reactions.

Another problem with the audio is a repeated gasping sound.  Watch closely and you will see that the noise is my pathetic little hiccups.  Chemo always makes me hiccup, but it is a delayed reaction.  I get it a few days after the dose, so I guess today was the day.

The whole process lasted about 20 minutes to infuse two bags of stem cells.  I remained pretty sleepy and groggy the rest of the afternoon and did a really dumb thing all by myself, but to which I will disclose here for the hilarity of all who take amusement from my misfortunes.  One of the nurses brought me a juice drink that is high in proteins and calories because she knows I am having trouble eating most foods.  Well, I sat in bed with this drink which she poured into a styrofoam cup full of ice.  I drank about half of it, and then started to doze off again and the cup slipped out of my hand and soaked the entire bed and my pants in red juice and ice chips.  Good thing these are vinyl mattresses.

At the end of the transplant, all the nurses from the floor brought me balloons and sang a special stem cell birthday song.  From now on I have two birthdays, my original one in November and now September 1.  And Mitzi told me it is perfectly acceptable to insist on gifts, parties and cake for both of them.  Tomorrow officially begins Day 1.  I have been counting wrong on the blog.  These days of chemo were considered Day -5, -4, -3, -2, -1 and today is Day 0.  Tomorrow I start counting up to the rest of my life.  Can’t wait!

Bone Marrow Transplant – Day 3 and 4

Saturday and Sunday in the hospital.  Not my first choice on how to spend the weekend, but at this point in time, I am happy to be here.  It is 9PM on Sunday night and the nurse should be here with my chemo any minute.  There have not been any surprises since the last time I wrote.  The highlight of the weekend was when Angela and Dominic came to visit yesterday.  I was able to get off my fluid drip for a little while and they took me to a frozen yogurt place in Emory Village.  I am not normally a yogurt fan (regular or frozen) but this stuff was pretty good and especially satisfying to my increasingly picky palate.  Today I could not eat any food.  I had a few little nibbles of the slice of baked ham that was sent up for dinner, but my real dinner consisted of a strawberry banana smoothie that my parents brought for me from the outside.

All is good for now and Monday will be my last day of getting lots of chemo.  I get two bags in the morning and two more in the evening.  Tuesday will just be one quick shot of some really potent stuff, and then I get my stem cells on Wednesday!  September 1 will become my new birthday!

Bone Marrow Transplant – Day 1 and 2

I told Angela I would write every day to keep a log of what happens during this process, and I screwed that up on the very first day.  Oh well, I am here now so calm down.  I am also including a disclaimer right here.  At the end of this post, there is a photo of my chest right after I came back from the line placement procedure.  It shows my port accessed and bandaged on the right side of my chest (this is the one I have had since the beginning) and on the left is the brand new tri-fusion catheter.  This does the same job as the port except it does not require a needle and it has three valves, hence the tri-fusion name.  The hold in my chest had not stopped bleeding yet and a nurse had not been by to bandage it, so it’s a little gross.

Yesterday started out in fairly typical fashion.  Here is a synopsis of how my communications with the hospital have gone this week up through yesterday morning.

MONDAY – phone rings, it’s someone from Emory calling to confirm my appointment on Thursday.

Emory Rep:  Mr. Gennari, we are just calling to remind you about your appointment with Interventional Radiology on Thursday August 26.  You will need to report to IR at 9:30 in the morning and your procedure will take place at 11:00 AM.

Me: Okay great, I will be there.  Any special instructions?  Do I need to fast after a certain time?

Emory Rep:  No sir, it looks like you will receive a local anesthetic and therefore you have no diet restrictions and you will be free to leave as soon as the procedure is complete.

Me:  Okay, thanks.  See you Thursday.

THURSDAY – I eat my favorite breakfast of a bagel with some lox salmon, tomato, cream cheese, capers and other stuff to make my breath smell terrible.  Then I ate a whole banana and we stopped at Starbucks and got some coffee.  Forty-five minutes later, I am in the prep room at interventional radiology and it goes something like this.

Nurse:  This is a really simple procedure where we just make a small knick in your neck and then tunnel a line down into your biggest artery.  You won’t feel anything because we use a local anesthetic and we give you some medication that makes you really carefree for awhile.  You haven’t had anything to eat or drink since midnight right?

Me:  No, I had a toasted bagel with a disturbingly large shmear of cream cheese, onions, tomatoes, capers, a banana, a glass of orange juice and a caramel machiatto.

Nurse:  (After a silence) How long ago was that?

Me:  I finished the coffee about 15 minutes ago and had the rest a little over an hour ago.

Nurse: (More silence) Well, we can’t give you the medication if you have eaten in the past six hours, and this would not be a humane procedure without the medication.

That was all I needed to hear.  I am not into verifiable in-humane surgical experiences.  So, we waited.  I was sent upstairs to check into my room and not touch any food.  But just to mess with them when I came back later that afternoon, I told the same nurse that I had gone out to Golden Corral for lunch and feasted.  But eventually the procedure happened and it was very simple…and humane.  I was awake, but not really in tune with what was happening and

Tri-fusion catheter

Tri-fusion catheter and port

before I knew it, the whole thing was over.

My chemo started around 9:30PM and lasted for one hour.  I have never had this particular chemo before and it had an instant effect on me.  I started getting a really bizarre tingling and swollen feeling through my face and arms.  Then I got extra queezy and I didn’t even make it to the bathroom.  I threw up in the sink next to the bed, and then did it again…and then again.  It was pretty gross, but I started feeling better after that and slept all night.  That was the first time a chemo had caused an instant sickness.

Today has been pretty easy.  Uneventful really.  I could still eat and I got out for some walks.  Chemo started again at 9PM and tonight I have two bags.  I will be done soon, and it is time to go to sleep.  So far, the effects aren’t really kicking in full gear yet.  I will let you know what happens tomorrow.

Bone Marrow Transplant – Day 0

Today is my last day at home.  It is Wednesday August 25 and it is early in the morning.  The sun is not up yet.  I snuck out of bed and have been quietly getting things ready for the day and my quietest activity is writing a blog post, so here I am.

Tomorrow I will check into the hospital at 9:30 AM and the first order of business is to have a central line placed.  Some people have called it a chicken foot, others call it udders, the nurses all just call it a line.  It is a rubber hose that hangs out of my chest and has three valves on the exposed end.  The other end goes right into a main artery so drugs can be fast tracked into my system.  When that is complete, I will be sent up to the 8th floor to check into my home for the next few weeks and will start getting the hi-dose chemo sometime late tomorrow.

I have been receiving many questions about visiting the hospital.  Here is the “official” response.  There are no particular visiting hours, so if you want to visit me, you can do it at any time.  However, there are exceptions.  8E (Eighth floor, E Wing), is specifically the bone marrow transplant neighborhood of the hospital.  All the patients in that section of the hospital are lacking fully functioning immune systems.  So, it is asked that if you feel even the slightest bit of a cold, flu, infection, whatever, that you don’t visit until you have recovered.  Even if you have allergies that are causing you to cough or sneeze, me and my new neighbors don’t want little sneezy microbes going airborne.  For this reason, standard procedure on 8E is that everyone entering the floor gets a glob of hand sanitizer and a little paper mask at the nurses desk.  The mask is not to protect you, it is to keep your personal germs from entering the common airspace.

This does not mean that everyone should stay away though.  I would like visitors and will need the break from the monotony of being in that bland environment.  So you can definitely come and visit.  I would like it if you could call or email me or Angela either the day before you would like to visit or the day of if possible and just check on the “current conditions.”  We will let you know if I am feeling well enough for visitors.

So here are the guidelines for visiting:

  1. Call or email me or Angela either the day of, or day before you want to visit to make sure I am okay
  2. Don’t come if you are not feeling well, sick, sneezing or have any condition that might possibly spread
  3. Children under 12 years old are not allowed on 8E
  4. No live plants or flowers are allowed on 8E

I will write more as things get under way

Tell the Fat Lady to Start Warming Up…

Because I am ready to enter the next and FINAL phase of my cancer treatment.  That’s right, I am not due back to the hospital at Emory Winship for any reason at all for the next 10 days, and when I do go back, I will have my bag packed and be checking in for the long 3 week visit to complete my bone marrow transplant.  There is some irony here though.  Exactly one year ago, I was feeling all giddy and excited because on August 26, 2009, I was scheduled to receive my FINAL dose of chemotherapy to treat my Hodgkins Lymphoma.  I got that dose, I celebrated and I prepared to move on with a cancer free life.  The cancer had different plans though, and came stomping back into my life a few months later.  Now, here I am preparing to begin my next FINAL step in beating cancer on none other than August 26, 2010.  Ironic, I know.  A bit of a slap in the face from old Mr. Fate too.

For those of you who have not seen or talked to me recently, I have made huge steps in the past two weeks.  In mid-July, I was still feeling pretty bad.  Lots of fatigue, it was hard to breathe, dizziness, plumbing (gastro-intestinal) problems, and a list of other issues.  Just a few weeks later, my energy is higher, I can walk up stairs without nearly collapsing, I eat anything I want to and don’t have any physical reminders of cancer right now…except for Dominic’s favorite game of telling me, “Daddy, you don’t have any hair!”  So if you are wondering how I am doing, the answer right now and for the next 10 days is, I am feeling great.

So, what is next?  On August 26, I will check in at Emory and have a catheter line placed in my chest.  This is the same concept as an IV, except a little more permanent, and with a thicker line that is capable of handling more volume.  The nurses will use it for drawing blood out for testing, and also for pumping in chemo, medication, stem cells, blood transfusions, extra fluids and possibly liquid nourishment if I cannot eat.

Later in that day I will start a 6 day regimen of high dose chemo that my doctor referred to today as, “…about the strongest stuff we have.”  It is called BEAM.  I am not going to get into what that means now.  Maybe later when I am in the hospital.

A few lines up, I wrote that I don’t have any physical reminders of cancer right now.  That is not entirely true.  I am still a little overprotective of the upper right portion of my chest where I have a port and don’t want to get it squished.  Much of my hair has fallen out, which is really not a problem at all because it makes shower time so much quicker, but it is still startling to see my head this way.  But the physical reminders are not terribly strong.  Now, this does not mean that I don’t think about the cancer.  Now more than ever, I feel a connection to the disease and a responsibility to do something.  I have become more involved in the larger community of young adult cancer survivors and connecting with survivors and their stories both across the country and right here in town has been a remarkably positive experience.

Lance Armstrong’s book, It’s Not About the Bike, opened up many lines of thought for me.  At one point in the story, way back in 1996 when he was also at the tail end of his treatment, his oncologist came to him and talked to him about what he called, “The Obligation of the Cured.”  Lance took the idea seriously and started the Lance Armstrong Foundation which eventually led to the development of the Livestrong movement.  Now, I don’t expect to go out and start a foundation after this, despite my entrepreneurial tendencies!  But, I do know that I have to stay involved with the fight.  Right now, I don’t have a crystal clear idea of what I want to do, but I can see two orbs, lighting the path of direction for me.  One path involves getting social and emotional help directly to the patients.  They have to have hope.  I see so much fear, worry and anxiety among those being treated, and especially in their close family, that I want to do something to help them cope.  I can’t say I want them to know it’s going to be alright, because this disease does not turn out alright for everyone.   Many people fight courageously, and they die anyway.  I will obviously leave the serious disease fighting to the doctors.  But I want to help people feel as positive and fearless as they can during their fight so that their mind stays healthy no matter what.

The second path I can see is spreading awareness among the general public, especially the younger population about what cancer really is and what it means to be in a fight against it.  I think people need to be more aware of what the disease really is.  I feel like many people who have not been through it themselves or been right alongside someone who has dealt with cancer don’t realize what the effects are.  I need to spend some more time thinking about this idea and formulating my thoughts.

To wrap this up, please know that all is good right now and I am really looking forward to getting started with the transplant.  I have been living with this thing over my head and directly intertwined with every part of my life for nearly two years and I am now only 4 weeks away from what could very likely be the end of my cancer!