Tick. Tock. Tick. Tock.

Is it just me, or does anyone else hear ticking?? We're going into the home stretch, the plane is circling the landing strip, the....oh, you get the idea, so I'll spare you further analogies.

I've completed 9 of 12 radiation treatments relatively unscathed. Because my esophagus isn't getting radiated, I haven't had any of the throat pain or swallowing problems associated with neck and chest radiation. The biggest thing has been fatigue -- I am most decidedly a slow-moving mammal these days. I also have some skin discoloration (darkening;) interestingly, you can actually see a vertical line on the front of my neck that marks the beginning of the radiation field. It's just darker, and feels warmer and more sensitive to the touch than my other clavicle and side of my neck. But really, overall, radiation is so much easier than any of the chemo has been.

Speaking of chemo, I've got my whole routine now for my high dose, along with dates. Turns out, I won't have much of a break from medical treatment between radiation and getting admitted into the hospital. I'd thought I'd have a week off to just rest, but I'm still going to have to go back and forth to Emory several times. Here's the schedule, along with the meds I'm going to get ( with links to relevant info for those who would benefit from this information):

o Tuesday, 10/3: Final radiation treatment
o Friday, 10/6: Go to Emory to meet with Dr. Kaufman (I love that guy!!) to go over risks of transplant and give consent
o Saturday, 10/7: Go to Emory for IV infusion of Kepivance, a medicine that will proactively reduce the severity of the mouth sores most people get. There are five levels of severity, and this medicine should reduce any sores I get by one level, so a Level 5 would go down to a 4, and so on. I will get this medicine for 3 days before starting high dose chemo, and then again for 3 days after getting my cells back (the transplant.)
o Sunday, 10/8: Go to Emory for IV infusion of Kepivance
o Monday, 10/9: Go to Emory for IV infusion of Kepivance. Also this day, take 400 mg of Dilantin 3 times a day. The chemo drug, Busulfan, which I’ll start on the following day, can cause seizures, so this medicine is taken as a proactive measure to reduce this possibility.
o Tuesday, 10/10: Go to Emory to get a double lumen PICC line implanted in my left arm. Together with my port, they will have the 3 points of “hook-up” they need to effectively treat me with chemo drugs, hydration and IV medicines, as well as the daily blood tests they’ll need to perform to check my counts. After the PICC line is in, I’ll check into my room on the Bone Marrow Transplant ward and start high dose chemo that same day. The first drug I receive will be Busulfan, and I will get this delivered via IV every 6 hours for 4 days.
o Wednesday, 10/11: Busulfan
o Thursday, 10/12: Busulfan
o Friday, 10/13: Busulfan
o Saturday, 10/14: I’ll start the second of my three chemo drugs, Etoposide, also known as VP-16. I will get this for 3 days.
o Sunday, 10/15: I’ll start the third of the drugs, Cytoxan, and I will get this with the Etoposide (VP-16) for two days.
o Monday, 10/16: Cytoxan and Etoposide (VP-16) – last day of chemo!!
o Tuesday, 10/17: IV hydration all day, to make sure I’m all ready for my transplant the following day.
o Wednesday, 10/18: Happy birthday to me!! This is Day Zero, the day when they will give me back my cells through an IV drip not at all unlike a normal blood transfusion. The days preceding it are in the negative, ie. I'll start on Day -8,) and the days following it will be counted up to Day 100, at which point I should be able to have my first PET scan to see if I'm still in remission and how big the residual tumor is after treatment. The beautiful and wonderful Angie graciously described her Day Zero transplant experience here, so I have an idea of what to expect. A lot of people apparently reek of – of all things! – a sort of garlicky creamed corn upon receiving their stem cells back (and for a couple of days afterwards) as a result of the preservative in which the cells have been frozen. Lucky Lorraine! I’m told that this day is pretty uneventful in terms of side effects or physical changes. It’s afterwards that the shit hits the fan. On this day I’ll start another three days of Kepivance to try to reduce the mouth sores associated with recovery after the transplant. I’ll get this IV medicine today through Friday.

That’s all I know now in terms of meds. I am to expect to be hooked up to that IV pole pretty much the whole time, because I’ll be getting lots of antibiotics to avoid infection when my blood counts are at rock bottom, getting lots of hydration because I will have difficulty drinking enough to keep me adequately hydrated, pain meds (I may end up with a morphine pump that I’ll just hit when I need more help with pain) and more goodies.

My goals for successfully traversing this transplant are the following:

o Walk as much as I can every single day. Walking exercises your lungs, thereby reducing the risk of pneumonia, which is a very real threat. They say that the more you walk, the quicker your recovery and the sooner you can get out of there -- and the better your recovery at home will be. It doesn't just help with avoiding pneumonia and regaining stamina and a minimal level of fitness, it also increases your ability to fight all sources of infections; it really just helps with everything, apparently. The SCT survivors with whom I've communicated about this topic say that it's hard, because what you really want to do is just to lie there because you feel so horrible...but you have to force yourself.
o Swizzle and gargle about a thousand times a day. The chemo drugs affect rapidly reproducing cells, and some of the most rapidly reproducing cells in the body are those in the lining of your mouth and esophagus and all the way through out the other end. (Also the hair, which is why your hair falls out on chemo.) Anyway, because these cells are so affected, one of the particularly unpleasant side effects of the chemo during the transplant are terrible mouth sores (lesions) all the way through the whole canal. Because bacteria can so quickly develop in the mouth, that’s where the sores can begin to take hold, so you want to gargle and rinse extremely frequently and also to brush the teeth using the little finger brush they give to use instead of a regular toothbrush to avoid any bleeding. Apparently you go to the bathroom a LOT during this process (lots of diarrhea as well as peeing from all the hydration) – so a wise and beautiful woman from the HD board, Robin, shared with me what she did during her transplant, and I’m definitely going to adopt her plan: she performed her mouth care every time she went to the bathroom. Works for me!
o Try to drink as much fluid as possible. I’ll have to get up to 2 liters in order for them to release me, which seems like nothing at all to me now but is apparently difficult when you’re in the throes of all the side effects.
o Try to eat even a couple of crackers or spoonfuls of soft rice so I can keep down all the pills they’re going to be giving me. I’m to expect a great deal of nausea and vomiting, so I’m not going to want to eat (especially if swallowing my own saliva feels like cut glass, as it does for many) – but I have to try if I want to keep down the meds they need me to have.
o Develop meaningful friendships with morphine and other narcotic pain medicines they give me. I’ve been told by a number of other survivors that I should not try to be a martyr in this – get any relief I can and pray that it makes the time go faster. They tell me that the less I remember of my hospital stay, the better.

I’m a bit worried about being alone in the hospital when Lorraine is at work and I’ll be all hopped up on pain meds and/or unable to talk because of the mouth/esophagus sore issues, and we are both worried about the period following my release, when I’m not supposed to be alone and will need some help with normal daily functions as well as getting back and forth to Emory a few times a week for them to monitor and treat me. The transplant treatment continues after your release from the hospital, when you’re at such risk for infection; I have been told to anticipate getting IV antibiotics and hydration pretty regularly on those visits back and forth to the hospital. Additionally, if I have any spike in temperature at all, I’m to hightail it for Emory immediately rather than going to any local hospital – and I won’t be able to drive myself. We’ll figure it out somehow, but it’s a little scary now. We do have a couple of friends locally, but each of them has other things going on which present challenges to being available to spend gobs of time with me or escort me back and forth to Emory. I’m sure we’ll figure it out, but right now that portion of it seems pretty daunting to both of us.

That said, I’m very excited about moving on to the meat and potatoes of this thing. I’m scared, but still very eager to just go in, do it, get out, and then tackle the next stage: recovery!

She's radioactive, baby!

I got my first radiation treatment today -- the first of 12, each of them fairly low dose at 24 GRay apiece. I'll get these treatments Monday-Friday. I met with the local radiation oncologist the week before collection, but she didn't know yet whether or not she would need to radiate my esophagus, something I'd feared very much. The strictures resulting from my childhood poisoning, and the subsequent heavy radiation I got slammed with all the thousands of X-rays I got throughout my childhood, put me at significant risk for developing esophageal cancer, so it's a real blessing that I won't have to have it radiated now and increasing my risk further. Yay!! I'm just so relieved!!

I didn't talk about it last week, but in the name of at least a nod to Radiation 101, I had to have a mask made which is used to hold my head in place during treatment. They marked the mask so I didn't have to get any permanent tattoos or get Sharpie marks on my skin. That's nice, because a lot of folks end up with the tattoos so the technicians don't have to mark the precise spots every day. The mask is pretty freaky, though. They soak this piece of plastic with lots of tiny holes in hot water and then, while you're lying on your back on the table they drape it all over the top of your head neck and shoulders. Then they press tightly so that it is very form-fitting and then they strap or snap (I can't tell which, I just know it's loud!) you in. The idea is that you can't move within that mask; you are held very tightly in place so they can be sure they're radiating exactly where they mean to. It's pretty freaky though. I can see that someone with claustrophobia would really struggle with this process. I do love that they mark the mask and not me, though!

The right side of my thyroid will get radiation, but not the center or the left side, so while I still run the risk of developing hypothyroidism, it's a smaller one than it could have been. I'm just keeping my fingers crossed, because of course I'd rather not have my metabolism permanently affected and all the other things impacted by a failed thyroid. I'm just going to go into this as positively as I can.

I said in my last post that I can't wait to get done with this and just get into the hospital and that still holds true. I'm resigned to getting radiation -- I never wanted it, but then I never wanted cancer either, so it's a means to an end. I just want to get on with it. My relapse date is June 21st, so we're going on 3 months now. Perfectly normal for an SCT -- but it feels almost interminably long when you're the one in it.

I just keep thinking of what lies in wait at the end of all this: a cure......and a trip to Italy with the woman I love.

Really successful harvesting!!

Bigtime WOOO here! Sorry I'm late in reporting this, but my collection went beautifully!! With a goal of 5 million, they collected 7,800,000 IN ONE DAY!!! Now how 'bout THEM apples?!?!

On Monday, Lorraine and I got up early to go to the hospital to get my neck catheter implanted. It had two lumens attached to one tube so they could both suck out the whole blood and return the blood with stem cells extracted through the same tube. The catheter implantation was performed under a twilight, and because I'm surprisingly (and unfortunately) resistant to lidocaine, they had to give me twice as many shots to my neck to numb the area -- ouch! Further ouch resulted from the freshly graduated newbie surgeon's incredibly tightly drawn stitches -- so every time I turned my head even a little bit, the two stitches holding this rather large gauge catheter in place pulled. Very painful. That said, this little puppy served me quite well, so you'll find me much more grateful than complaining. :)

Collection itself was fairly uneventful. A pronounced calcium deficit required the taking of additional Tums -- I'd been popping them every several hours for a couple of days prior, but my calcium was still very low. You realize this when your lips get very numb, among other things. I found that for a good portion of it I felt very cold, because the blood is returned to the body much colder than when it's withdrawn. I don't want to bore you guys to tears with all the minutia, but it really is a fascinating process. According to the Louette, the hemapheresis ward's Nurse Supervisor, the first prototype for a machine to withdraw stem cells was created by a fellow in the 1950's whose son had leukemia. This father, who then worked for IBM, asked his son's oncologist if the boy would have more time if there were some way to remove the stem cells and sort them, and the oncologist replied that he would. The man ended up getting funding from IBM to design and create the first model of this machine, upon which all subsequent machines were based. These days they're no longer created by IBM, they're smaller and quieter than they ever were, and also more effective. I'm not sure, but highly doubt, that the original machine came in time to help that poor man's son.

Each day that I was on Neupogen (I started on Friday) brought more pain, as these growth factor shots put the bone marrow into white blood cell production overdrive, causing the marow to expand -- and this hurts like a MOTHER! That said, I was very, very happy that they were able to collect that many in one day. Harvesting was assisted by the study drug I was taking, AMD3100, which acts to fill up the sticky parts of the blood marrow that those stem cells created by the Neupogen will return to if possible. Therefore, many more stem cells are free in the bloodstream for collection. Apparently I went into the Neupogen treatments with a high CD34 count, which reflects the number of stem cells present in the bloodstream. Then, when my labs of the night before collection showed a WBC count of over 77,000 before getting the AMD3100 shot, my oncologist on the morning of collection said that he had no doubt that we'd get at least the full 5 million that day. The AMD3100 had to have played a big role in getting me up to almost 8 million. I participated in the study as an insurance policy that it turned out I didn't need, but I have absolutely no regrets.

I start radiation on Monday. I'll get 12 treatments, each of 24 gammarays. I'll end on Tuesday, October....what? 3rd? That will be my last treatment, and then I'll go into the hospital on Tuesday of the following week, October 10th. I'll start out with a PICC line installation (double lumen, so with my port they'll have the three points of entry they need to give me care) and then I'll start high dose chemo later that day. I'll be treated with busulfan, VP16 (ifosfamide (I've had that already and it was very effective,) and cytoxin. This high dose will go on for I think 8 days or so, followed by a day of just hydration, so I go into the transplant fully hydrated. Then the next day I'll get my stem cells back, and this will be Day Zero. Transplant Day! Happy birthday to me in this great big, divine do-over!! All told, I should be in the hospital a month, but if my counts come up before then, I could get out earlier. They have to see evidence of engraftment (my body's acceptance of the donated cells - in this case my own) before they'll release me, and that evidence will be apparent in my blood counts and vital signs. I also will need to display an ability to remain healthy on my own --- so I'll need to show that I'm eating, can consume at least 2 liters of fluid a day, am mobile, have relatively normal cognitive function, and am processing waste appropriately.

I'm ready. I just want to get the radiation over with and get in there to get this party started. I'm all about the "Get 'er done" now. SOOOOO ready....

It's collection week!

Hello, all!

I'm writing this from a hotel near Emory, where Lorraine, Louie and I are staying throughout collection this week. If you guys could send some happy thoughts and good vibes my way, I'd appreciate it.

Early tomorrow morning I'll get a catheter implanted in my neck and do labs (I hate that they never use my port and just root around my arms looking for that elusive vein!) At 10:00 p.m. a visiting nurse will come to give me my AMD3100 shot. (This will occur each night before collection until we've collected 5 million stem cells or Friday, whichever comes first.)

Then collection starts on Tuesday! (She said bravely.) I I'll do that from 7:30 a.m. till around 2:00 p.m., then go back to the hotel to await news of the results. They'll tell me how many we collected and then we'll know if we're going back the following morning. They'll remove the temporary catheter the morning after my final collection, or at the end of Friday's session, whichever comes first.

That's the plan. I'm pretty nervous -- mostly it's performance anxiety. I know howimportant it is for me to produce the full amount. They did say that they could proceed with fewer than the full 5 mill -- that would just mean that I'd have reduced platelets for the first year and would just have to be careful about falling because of the bleeding issue (also bruising.) But not the end of the world -- not enough to delay proceeding, I'm pretty sure. But still I'm nervous -- I just really want to be sure they can get at least the full amount, if not more!

I have WiFi access here, so I'll be back to update once I know more.