Fred v Real Life

So there is no doubt that Fred was indeed real life. I lived it, I experienced it, I felt the effects of that real life. But somehow I have now returned to Real Life. I never saw Fred, I never felt Fred--I only knew about Fred based on other symptoms that told me he was there. And dealing with Fred was very much a visual thing--I could see the poisons as they went in, I could see the effect of the poisons on who I was, and I could see the changes in me that came from dealing with Fred. But Real Life is so much more than the entity that was Fred.

What is important in relation to Fred is COMPLETELY different than what is important to Real Life. Real Life is much more uncontrollable (it really is), and it is much more unpredictable. Fred had definable characters. There were receptors, there were patterns, there were symptoms. Real Life has things that cannot be defined, and at times, cannot be described. And certainly Real Life generally lacks the ability to follow any pattern.

What one thinks should be in Real Life isn't a lot of the time. I could expect of Fred and Fred would come through. I could say that Fred will respond to Cytoxan, and Fred did indeed respond. I expected it and it happened. I cannot expect that things dealing with Real Life will ever be the way I think they should be. And recently I have found that is not something specific to me, but it is specific to everyone. What we all expect may not be how Real Life responds. One might expect that we all see things in the same way, but I don't need to tell you that we all clearly do not. One might expect that those who work hard for things get the recognition and rewards of doing so, but we all know that doesn't happen.

I once was worried that if I worked hard at my job, I might expect to lose my right to have a window view. I worked hard anyway and my expectation was not met. I still have my window view. Fred would have liked the new view. But Fred did as expected and left. Right now, I like Fred better than I like Real Life.

NOT Fred related

OK, I’ve officially done it. Somehow I’ve become a crazy OSU fan. I’ve been living in this city for 13 years now, and I have resisted the temptation for most of that time. Sure, I’ve followed the football team—it’s hard not to, living here. And of course I follow the women’s basketball team, and more recently the volleyball team. I have “followed” the men’s basketball team, but generally I’ve been a fair-weather fan. But now I’ve started thinking about OSU and their sports more frequently—MUCH more frequently. I feel the need to get some OSU stuff to wear (I currently only own a hat and a t-shirt). I’ve printed up schedules (OK, just the women’s basketball schedule). I’m thinking about what part of my house I can paint scarlet and gray (maybe the garage?). And I’d like to get a block O flag.

Maybe it was going to the OSU/MI game (thanks, Tammie). Maybe it was the decision to go to the national championship game in Arizona (again, thanks Tammie). Maybe it’s just all the pressure this city puts on you to be an OSU fan. In any case, I can resist no more. I have forgotten my roots (GO BOILERS!) and jumped on a band-wagon that’s so big I can’t see the other side. And right now, the wagon is moving so swiftly that I know it’s not safe to jump off. So I will ride it for awhile. Of course, I ask all of you out there reading this to pay attention—if you see me on an average day with block O’s painted on my face, feel free to knock me on the head. I may have done it, but I don’t want to be that fan they put on camera…

Bye bye Fred

To have hair

The hairs are ever more present and growing, dare I say as normal...

Dance a Little Jig

I now have days wherein I feel like I could do a little dance. I don't usually do it--I'm generally not in places where breaking into dance would be appropriate. It is, however, a sign of things. Deep in the midst of treatment, I wondered if my good days were as good as it was ever going to be--even beyond treatment. Being 2 months out from the last poisoning, I now can see that good days now are far much more than the good days 3-4 months ago. Don't get me wrong--life is life. But life these days is a far cry better than back then. I now feel a valid difference between the good days during treatment and good days in general.

I've started to get back into a work out routine. Walking/running on the treadmill is mostly what is on my docket, but hopefully the running will become more prominent. I have even made it out to pick-up Ultimate. It's the sort of thing that I need--the stuff that I love to do. I think my body in general is starting to remember what it was like before. Hopefully it will remember what it was like over a year ago--it has dawned on me that a year ago, that lymph node was already swollen, so Fred was already there. I have to dig deep then, to remember what it was like before September 2005...heck, probably even before that. I'm not sure that my head can really remember that far back, but hopefully my body can.

My thoughts are clearer, my days are more energetic, my motivation is more present. The simple things in life have a little more meaning. And some days those simple things make me want to dance a little jig.

Drop Dead Fred

I don't know if you remember, but Fred is the name of my tumor. Last weekend, several of my friends walked or ran in a 5K to raise money for cancer research (it wasn't the Race for the Cure). They had shirts made, with the pink breast cancer ribbon on the front, and "Drop Dead Fred" on the back. I like the phrase. I think Fred is dead, but it is still fun to tell him to drop dead.

I went back to the treatment place today. I've started back up--not for chemo, but to finish the years-worth of Herceptin. [warning: medical explanation to come] Herceptin is an antibody. If a person's tumor has the receptor for Her2/Neu, then receiving the antibody Herceptin helps to keep any remaining (if any) tumor cells from growing. The antibody locks on to the receptor, keeping the normal molecule from binding to that receptor. And that keeps the tumor cell from being happy. My tumor was Her2/Neu positive (as well as estrogen and progesterone positive). It's a double edged sword (actually, I'm not sure if that's the correct descriptor, but I'm going to use it)--if the tumor is Her2/Neu positive, it means it's more aggressive. On the other hand, if it has the receptor, it means there is a treatment for it (Herceptin). So YAY, I guess. In any case, research shows that receiving the antibody gives another 50% chance of being cancer-free in 10 years. For example, if the chance of being cancer free is 90% without Herceptin, it's a 95% chance WITH the Herceptin. So why not? The only down side(s)...I have to get the Benadryl before they administer the antibody (to prevent an allergic reaction) and I have to keep the port in until treatment is done (they use the port to administer the antibody).

Whew. So I was back in the treatment center. Saw several old friends, who have progressed in their own treatment. One took a break from chemo (between regimens) to have her implants surgically placed. Another just had the "normal" break and is now getting Herceptin (she and I are now on the same schedule). It's funny--I'm the one furthest from chemo, so I have the most hair regrowth. There were lots of questions about how long it took me to get it to this length. But oh, I've had a couple of hair trimmings since the last chemo (2, I believe). And the eyebrows/eyelashes...well, it took about 6 weeks post-chemo for those to start back. And the arm/hand hair just started coming back last week (about 7 weeks out). And everyone is different. I think I lost less hair in total because I kept it short. But who knows. I guess if I can give the rest of those still in their treatment something to look forward to, that's got to count for something. I remember being there--HA, it was only 3 months ago that I would look towards someone who was getting their hair back.

I missed those people, and the staff at the office. It was really good to see them. I was strangely happy to be back to that place, but perhaps it's because I wasn't there to get poisoned. I was there to continue the process to ensure that Fred has dropped dead. Drop dead Fred.

The Little Engine That Could

I feel a bit like that little engine. I think I can. I feel like I'm getting to a place where my body is ready to move on and try out its new existence. I think I can. I stepped onto an Ultimate field again this past weekend. (when Beth reads this, she's going to kill me) It wasn't for long, and it was under what I consider safe conditions. My incision is healed, but the muscles aren't yet 100%. My team can attest to the fact that I did my arm exercises a bunch. And the swim in the gulf salt water was awesome. I think I can. They warned me not to layout. It didn't consciously cross my mind to do so, but admittedly my head does things sometimes that I cannot control. No, I didn't layout. I threw a coupe of throws, I made a couple of cuts. I did what I could. I think I can. I jogged a little each day. I did not go for a run, but I moved my legs and I stretched my limits a little. It's time--it's time to see what I can do. I think I can.

Signs of Norma(l)

I think I might be getting a sense of what it's like to be normal. I know I've said before that perhaps I needed to redefine normal. But I have sensed normal--the old-fashioned kind of normal. The DeAnna normal. It's not here all of the time, but it shows itself occasionally.

I have a line now, that reaches from armpit to armpit, across my chest. As far as scars/incisions go, it's beautiful. It's not grotesque, it's not raised, red, and ugly. What was gently holding the skin closed is all gone now and my body seems to be healing quite nicely. I'm working on getting the mobility back in my arms and shoulders, but heck, that's true for my entire body. But as far as the arms are concerned, that is getting much better. I can reach across my desk for a pen, I can reach across the coffee table to grab the remote. Throwing my hands in the air above my head is a little rough, so I just need to be careful when I'm watching the Buckeyes...although I suspect that by the Michigan game, I'll be ready.

The leaves have changed color and are falling from their branches. The temperature is chilly for October, but it is beautiful out there. Things are showing signs of normal.

To Have Hair

I now have chin hair, nose hair, and I'm getting my "moustache." Now all I need is hair that will grow off of the top of my ears and I'll be all set.

Maybe getting hair back isn't such a good thing.

Freedom from cancer

In theory, I am free of the beast. I haven't gotten the final pathology report on what all was removed during surgery, but based on what the intern said, things look really good. That handy-dandy lymph node that sent up the red flag was shrunken and shriveled and not really an organ of sorts anymore. Other lymph nodes were removed--from both sides--and I'll get the final tally on those later. My chest is now reformed and healing, and the confidence that it brings is amazing. In terms of the adenocarcinoma that I have been fighting, I am now free of the tissue that would otherwise harbor another little tumor that could go undetected. It is of great relief. Whatever else happens from here, I know that I have gone after this with what it would take to give me peace of mind.

On a side note--what they say about hospitals is all true: it is not the place to get rest. It's not so much that every 2 hours they come in to poke and prod, but for the nurse(s), it's their work day, so they are full of conversation. I was just trying to be polite, but in doing so, Linda and I had conversations at 12:30am, 2am, 4am, and at 6am. Then the nursing-world went quiet until almost 9am. I was out of the place by 10:30--so overall, we're talking 14.5 hours total. Not bad. Of course I barely remember a third of it. It's really odd to remember what was going on right before I went out. I was in pre-op, and had just been given a sedative. For the last procedure I had, the sedative didn't knock me out--it only made me loopy. Last I remember on Monday, I was having a conversation with Dr. Rominelli (or something like that), the anesthesiologist. After that, I got nothing until recovery--and after 2 hours in recovery at that. I guess it's best to not recall all things around a surgical procedure, but the control part of me hates that I lost that time with no input. But it's worth it to feel a sense of freedom...

Tomorrow

I just noticed that my last post was on Sept. 12th...and it was titled Looking Forward. I've been looking forward a lot since that last treatment. I knew that surgery was out there and that I would find my way to that day. That day is tomorrow. I'm not sure how many know exactly what I'm having done--I will have some lymph nodes removed as well as a bilateral mastectomy. I have trouble "telling" people this, but mostly because I worry about THEIR reaction. I'm really quite comfortable with the decision. It really is a no-brainer.

I am nervous about it--I've never been through such a long procedure and I've never had to spend the night in the hospital. But I can look forward to coming home on Tuesday and getting on with it. I still haven't defined what "it" is, but I suspect it has something to do with the rest of my life. I have definitely hit the point where I'm tired of cancer being the center point of my existence. I am hoping that soon the cancer focus can fade a bit. Sure, I know it will never fade completely away, but a little would be nice. The people around me have been AMAZING. I had no idea. Perhpas I can explain that more soon. Right now I have to think about tomorrow. Tomorrow is the beginning of it.

Looking forward

I have been thinking a lot lately, about the things I'm looking forward to post-chemo. Some of them are obvious, some of them may not be to an "outsider." I was going to write them down, so I thought I should write them down here. They are in no particular order...

Eyebrows are going to grow back.
Eyelashes are going to grow back.
Arm hair is going to grow back.
Head hair is going to grow back.
Fingernails will stop hurting.
Fingers will stop tingling.
Feet will stop tingling.
Water weight will go away.
Bad taste in my mouth will go away.
GI tract will be happier.
Energy level will increase (assuming I get enough sleep).
Nose and ear hair will return (yes, this is an issue not having it).
My brain will (hopefully) start to fully function again.

Some of the things that I'm not necessarily looking forward to...
Leg hair growing back.
Armpit hair growing back.
Hair cut/styling.

I guess that the things I am looking forward to outweigh the things that I could do without. I think overall that's a pretty good score. In the meanwhile, I'm just getting past that last of the "bad days" that happen as a result of chemo. I think I'll be home free after tomorrow...I'm looking forward to that.

September 8th

This date might always have some significance to me. I don't remember the date that I was first told that I had cancer, but I will remember that September 8th was the last day of chemo. I'm sitting in the treatment room right now--getting ready to fall into a Benedryl-induced sleep. I am happy this is it for awhile. Awhile because I will have to come back every 3 weeks for the antibody treatment (Herceptin). That won't start until after surgery, so that means that I get maybe 2 months of not coming in to this place. Part of me is sad about that--I have come to enjoy interacting with the regulars that I have met here. It's been very therapeutic.

Surgery is next--likely the first week in October. A month off of everything after that. I don't think I've had a month off of everything since grad school. I'm not sure if I'll know what to do with myself.

OK, the Benedryl is kicking in, and I'm having a hard time focusing on the typing...

The end never comes...

The last couple of days have not been what I would call stellar. I haven’t quite decided if I’m just in a bad funk, or if the current treatment drugs are finally catching up to me. Or perhaps I just pushed to far.

I went to an Ultimate tournament this weekend. MOJO, my team, was traveling to compete in the Chesapeake Open. This tournament is held outside of Washington, D.C., in Poolesville, Maryland. It’s becoming a great tournament (it’s only been around a couple of years), and there was really good competition there. I didn’t play any points; I could have in one game on Saturday, but I instead decided to remain in my role on the sideline as sub-caller. I never realized how much energy this takes. I’ve done it before, as a player, and I never realized how intense it can be. Not being able to play has opened my eyes to many new angles about Ultimate—the game, the sideline, the energy. I think I learned a lot about my team after spending the entire weekend on the sideline, and I hope what I learned can help the team in future competition. I will say that it definitely zapped me—in terms of mental and physical energy.

I haven’t felt well the last couple of days—since Sunday, really. I know part of it involves my not being in my normal routine (whatever that is). And being out in the heat for 2 days certainly has an effect. But I am sure most of it is just my body dealing with the last few zaps of Taxol. I have only 2 of them left, but I suspect these will not be the easiest 2. I’m trying to not let it bug me—that I am not going to breeze through until the end. I have had an incredibly easy time compared to most. I see women every week in the treatment room who are there not for an actual treatment, but rather to receive something to help them through the treatment they got a week or 2 before. I haven’t received anything in between, other than the great support from the people around me. I wonder now how I would have done if I had asked for an IV, or some iron, or something else.

The hot flashes I get now are pretty incredible. I can feel them coming on, and in the moments before I break a sweat, they can be pretty uncomfortable. I still don’t really know how long I might have to experience these—whether my body will adjust or if this is just going to be how it’s going to be for awhile. Admittedly I was becoming pretty happy at the idea that in a few short weeks, perhaps my life would return to normal. I guess I’ve been kidding myself that normal means truly normal. And I realize that being a cancer survivor means that from here on out, I will always wonder if something is brewing inside or I’ll wonder what this little lump is. I think I was hoping for normal in terms of not having these crappy days that have no other explanation other than I’ve had a treatment. I might have to redefine normal in the end, because right now I’m not sure what normal will be.

I met a woman from another Ultimate team Saturday—she went through chemo for breast cancer last winter. She has her hair back. She has started reconstruction after a double mastectomy, although the expander on the left side had to be removed. She seemed a little frustrated at the whole process. I think the thing that struck me the most was that 7-8 months post treatment, breast cancer was still completely forefront in her head. If you do the math, that means come May of next spring, I will still exist in a state that still revolves around this situation. September 8th really isn’t the end. Well, it might be an end to something, but it’s not the end overall. I wonder if there ever will be an overall end.

The Final Four

I've reached the final four. In some ways I thought this day would never come. Well, I guess it hasn't--it's tomorrow. In any case, there is a part of me that feels like this is just a way of life--something that I always have to do. I'm not sure when I'll lose that feeling, but I would guess that will happen when I quit going in for treatments every Friday afternoon. Wait, that won't completely happen for another year. But I have reached the final four.

I get asked often these days how I'm doing. I guess I've been asked that all along. But now I answer with how many treatments are left. No, I don't say that to complete strangers, but I do say it to those who appear to know what's going on. Sometimes I know those people pretty well, sometimes they are just people that I pass by at work a lot. In any case, I do know what it feels like to be nearing the end. I actually can't really believe that I've been through almost 9 of these weekly ones. I had really thought that by now I'd be so utterly sick of making the trip into the treatment office. But it is therapeutic to be there (see my last post), so perhaps that is what keeps me going. I've made it to the final four.

Color me...

OK, it's still not much hair, but it is hair and it is thicker than it used to be. No, it's not the normal color. It seems to be lacking full pigment. With the right lighting, it is definitely a halo.

The second half of the second half

I'm sitting in the treatment room, surrounded by many others that are at different stages of their treatments. I'm finding that not everyone gets exactly the same drugs--I get Tagument, someone else gets Pepsin, someone is getting adriamycin, I got epirubicin. But it's like therapy in here. The group sort of therapy. Everyone is comparing war wounds. What fell out when, what aches and pains everyone has had (and continue to has). A woman just found some "freebie" kits--complete with chap stick, thermometer, and a cold pack. I guess the drug companies know what we need. Perhaps not.

I'm half way through the the second half of the treament. For those of you keeping score, that means 6 more weeks. This is treatment 6 of 12, and the last, if things go accordingly, will be September 8th. I think a big part is in order, yet I'm certainly not done yet. A full year's worth of herceptin--the new antibody that enhances the chemo treatments--is still on the docket. That means that I get to keep the port in until next summer. Well, I guess that still better than having my arm poked over and over again. I don't yet know if the herceptin will come weekly or triweekly, but either way, I get to get poked for a whole year.

It's been 6 weeks of fun. I actually kind of mean that. While I get zapped because of the benadryl, I have been able to keep working, teaching, and doing stuff. This week was a tough one--I have NOT been getting enough sleep. Yesterday and today I have been hurting purely from tiredness. I'll get caught up this weekend. And I'm in the midst of treatment, and the benadryl hasn't completely knocked me out. Yes, I'm completely tired and sleepy, but sleep has not come.

I went to my first Ultimate tournament this past weekend, the first since all of this started. I played 6 easy points. Easy in terms of the importance to the game, and easy in terms of what I did out there. I had a few spurts of energy wherein in I really tried to run, but that didn't last long. It's OK, I don't mind supporting the team in this way. But I am READY to start losing some pounds and getting back into shape. Maybe it can happen before the treatment ends, but if it has to wait, it will wait. I am just looking forward to feeling energy that lasts beyond the occasional.

OK, perhaps I should stop with this current post; the connection here is a wireless signal that I have stolen from somewhere. I only have a short time to be here anyway. Then perhaps I can go home and find the sleep that didn't come to me today. I'm in the second half of the second half. The light at the end of the tunnel may just be there.

Coming and going

So it's been awhile since I have posted. It seems that when I haven't blogged you can rest easy that I'm probably doing OK. I seem to find myself doing more lately--which is great. I do tire so easily, and I'm still putting on pounds. The former is because the blood counts have been low, but they are getting better now (YAY Procrit!). The latter is because I do still get steroids at each treatment. With the first round, they'd give me IV steroids and then I'd take them for 3 days after--orally. Now I just get the IV part, but I do get it every week instead of every 3rd week. Yikes, I have 8 more weeks to go, so here's to hoping it's no more than a pound a week. Even at that, I'll have some work to do on the flip side of all of this!!

The new treatment has been interesting. It seems that my hair is coming back. I have few true bald spots on my head now, and I even feel the start of stubble on my legs (drats). I don't think it'll necessarily come in thick, but it is coming in. But what's going...feeling in my fingers and toes, and along with that my hands and feet are very sensitive. Makes it hard to even walk around the house barefoot. Andthe little warning they left out--my distance vision currently sucks. I was driving home from work a week or so ago and realized that I can't read the road signs anymore. Just a big blur. I almost scheduled an appointment to get my eyes checked...good thing I didn't--they say it will come back after. So here's to hoping my vision comes back and the extra weight goes away come September...

Sarah, Beth, Oscar, me, Miles, and Steph...at the National zoo. Matt took the picture. It was an AWESOME visit to see them, and to meet Oscar and Miles. Makes me ache for old friends.

I almost stole the kids several times, but Sarah and Beth couldn't create big enough diversions...

"Me"

This could be a long one…
I had the second of the next 12 treatments today. I already had one this week—on Monday. I have to say (and maybe I did) that it seems to be an easier treatment so far. I’ve progressed with “normal” activity all week. I started a new quarter at Columbus State although that means that I’m done with Wednesday-night softball because of a time conflict. It’s been good to go through a treatment and not have my body and brain fall into a state of disfunction 3 days later. No, disfunction is not a word—the Word editor keeps underlining it. But I’m not changing it. I feel like a lot has gone on, even dating back into the other treatments, but I just haven’t had it in me to blog about it. That’s why I think this one might be long. I just put on some music and am burning some incense, so I’m sort of inspired.

I’m playing in a softball tournament tomorrow—assuming we come up with enough players. The nurses at my treatment today were a little, well, amazed at that prospect. I guess that means they think I’m “strong.” That’s an interesting thought—I’ve gotten a lot of similar comments lately. “You look good” and “You always have a smile on your face,” and “You are handling this SO well.” It’s so very encouraging because so many times I feel weak and defeated. Not defeated in the sense that I cannot beat this thing, but certainly from the perspective that this is NOT the “me” that I want to be forever. Sure, I know that this (hopefully) won’t be the “me” that I am forever. But it is getting hard being IN the moment and seeing into the future.

There are emails from my Ultimate team (MOJO) flying—trying to figure out if we even have a team. I had to respond that I won’t likely be able to play much until at least September, and then at some point I’ll have to have surgery, which will set me back again. I had thought that when I would decide to retire from Ultimate, it would be a conscious commitment to finishing strong. Not Michael Jordan style, but perhaps Charles Barkley style. Decent, still with something to contribute. And I had thought that this year would be that year. After being in Sarasota again last year as a player, I thought I would go through the winter and spring committed to improving my conditioning and being stronger, for one last year. I know I wouldn’t be able to reach the conditioning that I had when I was 28, but hey, why not try. But that didn’t happen, and now I have to tell teammates that I will likely be a sideline fixture. I guess I can try to turn that into a positive—I know my lot in life is becoming a sideline fixture for Ultimate, whether that’s coaching high school, college, or a club team. I guess I just wasn’t quite ready for it to happen like this. Maybe next year I can strive for that in-shape player that I can be. By the time of the 2007 club season, I will be 40. Maybe that’s a good time to finish it out strong. Perhaps that will be more Michael Jordan-like—when he came back from playing baseball. Yeah, that’s it—my cancer is like Michael Jordan’s attempt at baseball. Now I understand what this is all about.

I learned today that a fellow Ultimate player up in Cleveland is also battling cancer. I don’t know much about her case—it’s the first I’ve heard—but it isn’t sounding great. It seems that she has cancer in many places (the email mentioned back tumors, cancer on her liver, and rapidly dividing cancer in her bone marrow). She’s probably 10 years younger than I. And at this point, they don’t know the origin of the cancer. They can’t do a full course of chemo because of the liver issues, so they are working on helping that so that can boost up the chemo. Drats—it definitely hits me harder when I hear of other’s cancer battles. Not that I wouldn’t expect that to be the case, but when it happens, I am surprised by my reaction. It also hit me when I heard about a coworker’s friend who had brain cancer. He died recently, after knowing (I think) about the cancer for about 1.5 years. He left a wife and 2 young children. From what I’ve read about them (from their website), they are deeply religious and rooted in faith. I think faith is the key—and I don’t necessarily mean that any “faith” needs to be based purely on the Bible or any “god.” But I do think everyone who is battling something—whether an illness, an addiction, or some other affliction—needs to be rooted in some faith, something spiritual. I haven’t quite identified the character of my faith, but I know it’s there. Perhaps that’s why I can be seen with a smile quite frequently (or so I am told). I can’t really explain it—I don’t have an answer as to WHY I am handling my affliction as I am. I just don’t know how to do it any differently.

So yea, it’s hard when I hear about others battling cancer. And I know for anyone who may read this who is dealing with a situation as such—IT IS HARD. It isn’t fair. And it is different for each individual going through it. How I sit in the treatment room and handle having poison dripped into me is different from the 68-year-old across from me. How I handle walking around with nothing covering my practically bald head is different from the 43-year-old mother of 2 who has a wig on. And how those around us handle being around us is unique as well. There are no rules as to how to handle cancer—or other diseases. There are ways to cope, there are ways to get through each day—but there are no rules. And I think that is the hard part. We are creatures of structure, and having rules/guidelines us gives us comfort. Without them, we cannot understand how to feel or know what to do next. But we all do feel, and we all do something next.

I don’t know what I’ll feel tomorrow, but I do know that what I am doing tomorrow will exactly lend itself to what I feel. I, of course, hope I will feel a sense of accomplishment in being out at the softball fields in the sun, in the warm July air. It’s July 1st tomorrow—moving ever so closer to the end of the treatments. And tomorrow I hope that I can forget for awhile that I am not the “me” I was, nor the “me” that I want to be. I’ve battled in my head that I don’t “look” like myself—I have little hair, I have more weight, and I have dark circles on my eyes after treatment. I know that these things needn’t be permanent. I know that the “me” doesn’t really involve what I look like on the outside. Yet I am pained about who I am on the outside. I’ve finally realized that the pain isn’t about how I look—it’s about how I got to looking how I look. And I can only hang on to the idea that in 11 weeks the treatments will be over, and in 4 months I should be through surgery. And THEN I can reach really deep, dig in there and pull out the “me” that I want to get back to. No, that’s not right either; I don’t want to go back (well, sure I do, but I also know that can’t happen). I want to move on from this. I want to move on from dealing with the situation—the realization, the worry, the treatments, the being in need of support. There are so many things about my world right now that aren’t “me,” but I can let this “me” go in a few months. Not forever—I suspect this person will be with me forever, out of necessity. But in terms of the overall package, I can return to being someone that doesn’t worry about dark circles, “soft” parts of the body, and certainly someone that doesn’t worry about cancer every minute of everyday.

Sleeping through treatment

Maybe they are right, or maybe it's too soon to tell, but the Taxol does seem easier. It wasn't any faster today, but I was told the subsequent treatments will be quicker. The biggest effect that I have felt so far is from Benadryl. They gave me about 100 mL by IV, and it kicked in big time. I felt really bad for Jane (who had accompanied me today--good thing, not sure I could have driven home). I slept almost the entire time I was there. And then I slept a few more hours at home. But on the flip side, I was able to make it down to class with no problems (although I did have problems AT class--the projector wasn't working so I couldn't give my lecture).

I'm a little tired tonight, and that meds have left a bad taste in my mouth (literally). But I am planning on going into work tomorrow and have a "normal" week. Perhaps sometime I'll blog as to what "normal" really means for me these days. I go back for another treatment Friday. I'll see what I'm up for, but the neighborhood is in full swing with Fab Fridays, so I'd like to attend one. It would probably be rude to attend and fall asleep in a lawn chair...

3 more days

I was supposed to have a treatment today. The Poison Doctor’s office called to reschedule it for Monday. Apparently they don’t like to start new treatments on Fridays in case there are problems in the first few days. Um, I started all of this on a Friday, but OK—if they feel it can wait 3 more days then I can enjoy my weekend.

I think I’m hitting the point where this entire process is getting old—as in I’m tired of planning around treatments, wondering how I’m going to feel, etc. Additionally my body is aching for some regular exercise and activity. Oh sure—I’ve gotten out to play basketball and softball, but it’s not a consistent thing. Regularity. Ho-hum activity. Stuff that usually bores one to tears--that's what I'm craving. Yes, I know this time will come—hopefully in September. And perhaps with this new treatment I will be able to do more. I keep reminding myself of what they said at the get-go—if you can get through the first 4 treatments you’ll be home free. OK. Done that.

I get asked about my eyebrows a lot—the fact that I still have them (whew). They are definitely thin—they are usually “robust” and dark. Now they are almost gray (as in DARK gray, not as in graying hair) and they are no where near robust. Makes me think of all of the places that I’m lacking hair right now. It’s really rather nice. I did get another hair cut last night—even when what’s left of that grows, I’d rather just have it short. Quite frankly it would look silly if it grew out anyway—it doesn’t cover the entire scalp. I wonder what the next treatment will do to what’s left. I wonder what the next treatment will be like all together. I guess it will have to wait another 3 days.

Taxol is easier

Ah, it’s a good week. I finally turned the corner sometime last Friday. By Saturday I was able to be up on my feet for the better part of the day, and it was the first day in 5 that I didn’t need a nap. Sure, I could have taken one, but I didn’t NEED it. And since then I have felt as close to normal as I can these days. I played softball last night, I moved some dirt around the yard and garden (with help) tonight. It feels good to be out and break a good sweat.

I’m getting a heart test tomorrow (the MUGA scan I had before I started chemo). They need to ensure that the epirubicin didn’t damage the heart so that I can receive the herceptin. Then the weekly blood test to see how the WBCs and RBCs are doing. I’m guessing the procrit helped the RBCs, but we’ll see.

I finally have started thinking about the next round of treatment. I couldn’t do it last week—it made me feel ill. Pretty amazing since none of the chemo has actually made me sick—to the fullest that one would think. But what I do feel is sort of like nausea…it’s just odd. In any case, since I’m out of the “bad week,” I can think about the future treatments with a little more ease. That’s a good thing—makes me think I can actually get through those 12 weeks. I’m still a little “nervous” as to how I’ll react to the taxol, but they say…

This is what Casey, Jake, Cody and Sidney do when I'm home recovering from treatment.

Halfway?

Treatment number 4—check. It’s a little hard to “talk” about—there’s that weird inside feeling that is indescribable, although I will say it makes me feel ill in some way. This has definitely been the roughest so far. I thought at first that I might slide through. Monday and Tuesday weren’t so bad. But by Tuesday evening, I was “hurting,” and have been ever since. Perhaps the onset of the fatigue is just coming later. Perhaps it’s just different because my body has been poisoned now for the 4th time with the same drugs. Hard to say. Definitely hard to talk about.

I had my first appointment today with the genetics counseling office. It was mostly about background stuff—family history so they can build a pedigree. Interestingly, it seems pretty one-sided. Dad’s side is kind of “missing” in terms of detail—I don’t know a lot about aunts, uncles, cousins of his. But it’s also missing in terms of women. Given that, it is entirely possible that one of the major genes that is identified as defective in breast cancer has been passed down on his side. The nurse actually told me there is a correlation with one of the breast cancer genes and prostate cancer. I had a hunch, but that’s the scientist in me. So I’ve signed on to have some DNA analyzed. They don’t yet have a sample—insurance has to be submitted and the like. The hope is that I test “positive” for a defective gene—so that the future of my health planning can be determined. If I come up negative, the decisions get a little harder. Is it worth the risk to NOT have a mastectomy (or a double mastectomy) or to leave my ovaries in place if I don’t have defective genes? I can say right now, I don’t want to have to go through chemo again—but this is the bad week. I guess when it comes to chemo there is no good week.

That pedigree—it was interesting. I had to make the connection that my dad’s brother married my mom’s sister. It makes an interesting connection for the pedigree, and could prove insightful for my cousins, should I have defective genes. It might help them to get better health screening down the road…at least I hope it would help them. And of course mom’s side is huge. I think I remembered everyone.

So if I am defective, or have a variant (a defective gene they don’t yet understand), I can again enter the research world. There are a few researchers here at Ohio State and at the Mayo Clinic that would be interested in my DNA. I guess that’s one way to get back into research. Of course I would want to go in and do the analysis myself, but I guess they can’t let that happen…I’ve probably been away from it for too long…

I guess all in all the meeting today was interesting. I’m 38 and I have the opportunity to determine a major portion of how I handle my healthcare for the rest of my life. Not just getting check ups—but removing parts that could cause later problems. Now that’s not making big decisions…

For what it’s worth, what hair I have left seems to like to grow. I need a hair cut again.

Heading into Number 4

OK, so it’s been a long time since I’ve posted. I guess when it comes to the topic of this blog, that’s a good thing. It means I’ve been too busy to blog, which means that I’m doing stuff—fun stuff.

I go in tomorrow for the 4th and final of what I call the BIG treatments. The triple cocktail of chemo drugs comes to an end. I can’t say for sure what the next 12 weeks (that start on June 23rd) of treatment will hold, but they say it will be easier. I guess as long as the treatments don’t knock me out for 4-5 days, things will be easier.

I do still enjoy the 2 good weeks. I recently helped out at the UPA College National Championships—that were held here in Columbus over Memorial Day weekend. The tournament was a blast. Admittedly, I haven’t had my hands (or any other body parts) much in the college Ultimate scene. I have friends and teammates that coach (Yay Meems and MarMar!), and of course with my involvement in the UPA, I usually know a little about what’s going on—but this experience was really enlightening. Once I got passed the “work” part of the weekend (I was head scorekeeper and worked through all of it), I was able to watch some. I had no idea how far the college scene has come, in terms of talent. These kids are good. And it was amazingly fun to watch, despite the streakers during the women’s semi-finals. And I managed to get a little color on my noggin…

I gotta say that not having hair has been pretty great. Sure heads turn and people wonder about my gender. But the latter has happened over the last several years anyway due to my gender-neutral attire. Apparently last night at softball, a little girl was overheard repeatedly asking f I was a man or a woman…and finally she said, “the bald one—is that a man or a woman?” I can understand her concern—she was watching her mom play in a women’s softball game. I’d be concerned too. But wow it is nice being able to cool off so easily. Just a little water and poof, I’m cool. Not to mention the lack of prep time in the morning. Mind you I still shampoo, and I even got a hair cut last weekend. It needed a little clean up—what’s there seems to still grow a little. I guess I’ll get to keep it this way for the summer…until then next 12 weeks are over. After that, I’ll just see what sprouts and go from there…

So I head in to this last one, a little hesitant. It is getting a little harder to mentally prepare for the treatments, which makes me wonder how I’m going to do it weekly come the end of June. But I am sure I will find a way—and the support of friends and family will certainly take me a long way. I came home last night to a freshly mowed lawn. I didn’t do it—I was off having my gender questioned at a softball game. People can be really great. I’m glad I’ve had this opportunity to see that human-kindness has not been lost completely. Just ask, and I can give you a long list of folks that show it to me everyday.

Stephanie and I on opposing teams...the sun is blinding in left field...

Sarah's hit brought me in from third. No, I'm not that sweaty--we had gotten rained on...

I'm not sure that I hit this one too far--but I still got something left...

This is the sea of 31,900 people that ran/walked The Race for the Cure on Sunday. It was a record crowd (apparently). Is it proper to ask "Who won The Race for the Cure?"

3 out of 4

I’m 4 days out from the 3rd chemo. 3 out of the 4 big ones are done. Whew. It’s again a little worse—in terms of the fatigue—but I knew that would be the case.

Mom was in town for a long weekend—it was so incredibly great to see her. We had brunch with Beth’s parents Saturday morning (LOVED Judy’s coffee cake!). Saturday night was the cookout—planned so mom could also meet some amazing people. And wow did she. I had no idea that the turn out would be so great. I wasn’t involved in the RSVPs, so I didn’t realize who was coming. I’m glad that I was still on a steroid-induced energy high so I could enjoy it all. Mom did too—as did everyone (I hope). I still cannot believe how friends can make such an impact. Knowing people are out there that care is enough to get me through the next couple of down days. You guys ROCK!

This past treatment went A-OK. I still get a little feeling in my chest going in—can’t quite explain it, but it is sort of a negative association deal. I have it much stronger right after chemo (ie. NOW), but it does subside before the next one. I hope that trend continues. After the 4th of these big ones, I’ll get 3 weeks off before we change over to the Taxol and Herceptin. The Taxol is a breast cancer-specific chemo drug and the Herceptin is actually an antibody. It’s geared to attack proteins that are on the surface of the cancer cells. So I’ll be down to 1 chemo drug instead of 3 each treatment, but I’ll get to go in every week. I’m hoping that the side effects—as predicted—will be less severe, else it’s likely to be a long 12 weeks.

OK. Maybe not much of an update, but the brain is doing its usual slow down. I’ll try and get something up here again soon…

The "Fancy" doo-rag was a hit! Very comfy... 

Thanks...for being there. 

Mom and I...it was wonderful to have her around for the weekend! 

Apparently I need to be eating something when I'm at chemo...this time it was a brownie--provided by the nurses. 

Grasping for normal

If ever you think to yourself “I wish my life wasn’t so normal,” think again. There have been 2 recent times that I have screamed for normal. The first time (and this one lasted a long time) was during the biology project at work. It seemed like the never ending project. I guess it kind of was. I just kept hoping for a normal work day, where I would do into work, do my work, and come home from work to have dinner, play with the dogs (and the cats), watch some TV, and go to bed. Sound boring? Sure, but I didn’t get a lot of that during biology. Eventually the biology project slowed down (it’s not really done yet, but that’s another story), and it seemed that I might get more of the “boring.” Then came the current situation.

So this situation has taken me from normal again. Last week when I was struggling with the chemo-induced fatigue, I was completely “sick” of being on the couch. The couch was something that I craved during biology but now I dread the couch time. Oh sure, I still sit on the couch and watch TV. The last few days I’ve done other things to ensure that the time on the couch was well deserved. I’ve managed to hit the treadmill (albeit just for a fast walk), played softball (I was pretty busy in left field), played basketball (got there late, but got some good playing time), and tonight I worked out with Zoi (the Columbus women’s Ultimate team).

As I type this I’m super aware that I am in need of a shower, but part of me wants to enjoy the feeling. I feel like I’ve done some good things for my body and I smell like it too. I don’t want to wash that away for fear that I won’t feel this for awhile. It’s a strange fear that I have—when I’ve had a treatment and when I’m recovering from a treatment. It’s the fear that I’ll be down and out (my terminology for the “bad” time after chemo) forever. I think this week I’ve had something click in my head that is telling me to do. OK, I can’t really run around like crazy—I’m pretty out of shape. But I know that I can go do stuff and it’s good for me to do so. Sure I have to worry about low blood counts and the like, but one step at a time. One treatment at a time.

It’s been a good week.

Not your normal posting...

I started to write a post last night and lost my train of thought. That's not uncommon, I'm finding, during the week after treatment. Apparently these drugs are similar to alcohol in their ability to knock out brain cells. Let's just hope it's not permanent.

The thing I most wanted to post on was the yet unnamed lymph node. IT'S GETTING SMALLER! On a whim I gave it a poke last night, and wow, I can tell the difference. Holy lymph fluid Batman--the drugs aren't just to make my mind go numb and my hair fall out!! Progress is being made!! And I got the weekly blood-draw today. White blood cells are hanging tough, but falling. I expect that next week I'll be back on antibiotics. Bring on the green leafy vegetables!!

OK, there's the mohawk... 

So I got another chance to play with the hair. Decided against the mohawk, but I did have it for about 3 minutes! 

Chemo--the saga continues

OK, so it wasn’t Jenn’s driving. After the first chemo, I drove with Jenn, Jane, and Adrienne out to DC to see Kerri. On the drive out, I didn’t do so good, but that doesn’t surprise me when I’m in a car that I’m not driving. [Haven’t I mentioned this scenario before?] In any case, last night after the second round of chemo, I felt some of the nauseousness that was there after the first round. It was totally bearable, and again, the oral meds they give do wonders.

I’m doing OK today—went to the OSU spring game, which in and of itself is a weird event. TONS of Buckeye fans swooped into the Shoe to watch Ohio State play themselves. Scarlet v. Gray, or Red v. White according to the head umpire. It’s just odd—who do you root for? In any case, it was a gorgeous day and the grass of the field was green. They expected 40,000 fans, they got almost 64,000. But I digress.

I spoke with Dr. Yadav (you may remember him as the poison doctor). He said that with the remaining treatments, I will likely see the fatigue increase, but not the nausea and vomiting. Good—I’ll take being tired over puking any day. And the 2 pieces of good news: my white blood cell count was back in the normal range, and the doc noted that the legendary lymph node was smaller. BAM, take that you cancer ridden life saver. Hm. I haven’t named it yet (recall the tumor is Fred). Nothing comes to mind now, so I’ll have to think on it.
In any case, I’m now half way through the rugged first half of treatment. In other words, I’m half way to the easier part. I’m just going to keep on keeping on in the mean while.

Beth kindly went and picked up Dairy Queen during my second chemo. I'm not sure the other patients liked it so much, but I'm not sure if it's because they were jealous, or if it was just completely unappealing to them. 

Take a look at the sides of that doo! This is going to require some serious maintenance. 

Be careful what you ask for

OK, sure a few days ago I was seemingly complaining that the predictors of the start of alopecia (loss of hair) were wrong. No, I wasn’t complaining that I wasn’t loosing my hair (Dan :) ). I just think that when one is getting ready to experience something completely foreign, any insight comes in handy. And when that insight fails to prove itself, it’s disconcerting. I knew that it would fall out—it is more rare for it not to fall out. But I had mentally prepared for day 14, and on day 14 (and on day 17) it didn’t happen. It is sure as heck happening now.

It’s been thinning for the last week or so, and showers and head-rubs have been an adventure. The last 2 mornings, I have awoken to major “holes” in the sides—where my head rubs the most on the pillows. And today, it looks down right sad. I think the next step will be to take the clippers to it without a guard at all. That way there’s no question that I really don’t have hair (what is still attached needs assistance to fall the rest of the way out, and I don’t really have time to sit down and pull it (painlessly) out).

I think my leg hair is less “loose,” but I think that’s only because I made it through the 3 weeks between chemos without completely losing it. I suspect that since I just got another treatment yesterday, it will come out more gracefully now.

Day 17

Strangely, I still have my hair. By all means I shouldn’t, or at least one would think not. I guess that “day” doesn’t fall on the same day post-chemo for everyone. Perhaps it’s because what I do have on my head isn’t heavy enough (ie. long enough) to fall out. Heck, maybe I just ain’t going to completely lose it. Whatever. I am still getting chemo, and I still might have to wear a hat on my head at night when the temperatures dip.

Things have been relatively quiet this past week. My body has been doing seemingly just fine. I still feel a semblance of fatigue, but nothing like a couple weeks ago. Figures—I get my next treatment Friday. Well, maybe. I found out today that my white blood cell count is low—lower then the normal range. I have antibiotics to take when this happens, but if the counts don’t go up or if I get an infection, Friday’s treatment will be out. Sometimes I am amazed at all of the things that factor into all of this. Every weird twitch, every new ache…makes me wonder “is it the chemo?” I wonder if I will think like that for the next six months.

I think this is the lull before the next storm. It is a good sign, though, that I have gotten some “good” time in between. I’ve been told that the side effects more or less repeat in the same pattern. But I was also told that my hair would fall out on day 14. It’s day 17.

Buzzzzz

I dried my hair to completion this morning with a towel. It was easy enough to do since I had Beth take the clippers to it last night. Guard number 4 was in place—and I had thought we’d work our way down to the number 2. But in the end, I decided this was short enough. My first thought when I saw it was how much I looked like Dana. I know he wanted me to also go blonde so he could see what HE might look like with blonde hair (selfish bastard :) )…I decided against that in the end—I’m freaking enough people out right now.

It’s actually really fun that I’ve gotten this opportunity—and I do view it as an opportunity at many levels. At a fun and basic level, I got to cut off my hair (which was a GOOD thing because I had been pondering doing so, but had spent so much time growing it out it was hard to convince myself that I should), and now I’ve gotten the chance to see what I look like with the Sinead O’Conner look. OK, I don’t have her beautiful face, but it’s not as bad as I thought it could be.

I went to the restroom here at work a few minutes ago. As I was walking there I realized that now I’m REALLY likely to scare a few coworkers in there. I guess I needn’t worry about that—it’s their problem, not mine. Friends did get me some new earrings—something that I hope might help distinguish me from the little brother I didn’t have (mine are all older). But if not, so be it.

For what it’s worth, that fatigue thing has faded. I even managed to play some basketball last night. So perhaps I’ll have a better understanding as to how my body is going to react for the next treatment. In the mean time, I’m just going to try and do good things for it and get it ready for the next round of poison. I recently read (YAY!! I’ve been READING!!) that when curing cancer, one has to base life’s schedule on the chemo schedule. I understand that now. Hopefully the events that I can’t control will work out those terms…

The doo a week after chemo. Hasn't fallen out yet, but the tingling scalp tells me it's coming! I think I look like my brother Dana... 

This is at my first chemo; the red line is fluid going IN, not out. I think by the next treatment, I'll be sans hair... 

Fatigue

fa·tigue n.

1. Physical or mental weariness resulting from exertion.
2. Something, such as tiring effort or activity, that causes weariness: the fatigue of a long hike.
3. Physiology. The decreased capacity or complete inability of an organism, an organ, or a part to function normally because of excessive stimulation or prolonged exertion.

I think the definition of fatigue is interesting. All of the above relate to activity or exertion causing the fatigue…sort of that “wear and tear” idea. I can honestly say that I haven’t done any activities or exerted myself lately. In fact since Monday, I’ve been barely able to put a run of 5 minutes together on my feet. I’ve managed to teach my class twice, and I’ve made it into work for a few hours at a time. But seriously—I’m not even sure I can put into words how it feels…this thing they call fatigue.

I know tired—I’m an Ultimate player. I’ve pulled all-nighters, I’ve had runs of sleepless nights because of work…but this is crazy. It’s the weakness that one feels post-fever, but without the aches that come with a fever. And when my body is really trying to shut me down, it actually cries from the inside. I can feel my inner being (whether that means my cells/tissues or whether that means my soul, I don’t know) yelling at me. I get breathless just trying to have a conversation.

Sleep helps, most definitely, although it’s not always easy to fall asleep. My MIND knows that I’ve had “enough” sleep, so it doesn’t want to shut down. But my body has its own mind for now. And I have to say that really pisses me off. I know it’s a control thing, and all along I have been trying to control this—at least how I handle THIS. I have to give up some of the control right now, or at least I have to find a different way to take control. This week, I took control by deciding that I couldn’t go on a trip to California for work. I hated having to admit that. At the beginning of the week, I figured each day would get better. Perhaps each day has, but I can’t tell that yet. So instead, I’m staying put. I’ll do what I can with each day, I’ll hang out with friends, perhaps I’ll try and enjoy a good cup of coffee (I have been missing that). And I’ll spend some time telling my inner self that it’s fine to be angry at me—I’m angry at it too. Perhaps we can come to an agreement to fix the situation.

Dr. Poison

I actually called my chemo doc that at my first appointment with him. What else can he do to me? His name is actually Sanjay Yadav. He’s a really nice guy—very genuine, very concerned, and very informative. He has already given me his cell phone number—to use even when he is NOT the doc on call. He laughed at my 3-ring binder. Yeah, I put together a binder with all sorts of information. Cancer stuff, medication information, insurance papers, etc…it’s my style I guess—to have this on hand. He saw me showing it to Walker at my first treatment. He giggled at me from across the room.

So the first chemo treatment…I was there about 4 hours…they say it won’t always take that long, but since it was my first, they wanted to be sure I handled the process OK. I guess I did—I drove home after (with Walker in the car). She was a trooper. We sat among 10-12 other chairs…not all filled. But those that were filled were occupied with women all probably over the age of 60. They sort of looked at me funny—in the sense that “hey, she’s too young for this.” Perhaps in some way they were thinking that “she’s young enough to do this.” There was one other new patient there. She had a little breakdown when she realized she needed all of the prescriptions filled BEFORE starting that day (and she was already hooked up). But the nurses rounded up the meds she needed to get by until she got hers filled. I wanted to give her a hug and tell her everything was going to be OK. The woman next to her (Norma Jean) was starting her 2nd 12 weeks of treatment. She was filled with advice, but also chatted at length about the bad stuff that can happen after treatment. I almost asked her to stop, but I guess it’s good to know the good and the bad.

The procedure itself was pretty uneventful. I had my laptop with me (all of the ladies there were rather taken aback by that), and Walker had reading material. They basically plug the tubes into the port and start pushing fluids. They give 2 different kinds of anti-nausea/vomiting meds first, along with one of the oral pills I have to take for those first 3 days of treatment. Then the 3 different drugs (fluorouracil, epirubicin, and cytoxan—and yes, I can pronounce all of them) are administered—each separately. The first 2 are “pushed”—the nurse has to use a syringe to get them into through the port. The last one is an IV drip. So by the end, I felt as though my eyeballs were going to pop out from all of the fluids.

They also push you to drink a ton of fluids—it helps with the cleansing part, which minimizes the potential side effects. I haven’t felt too many—I was nauseous that first night, but I was also in a car that I was not driving (ie. motion sickness evil). But since then, I’ve just had raging heart-burn and the fatigue part has set in (hey, you chose to read this). Unfortunately it’s not the fun fatigue—the drop on the couch and go to dreamland kind. It’s just more like recovering from the flu—low energy. But my appetite has been good (and steroid aided), and I am getting good sleep. The drugs they give for the first 3 days after treatment have to be amazing. They have kept me going and strong so far. I’m still going to have to deal with some stuff, but at least it’s not the vision of 20 years ago. And I am beginning to crave much healthier things. I haven’t had coffee in 4 days and I am loving a glass of juice in the morning. Might not seem like a lot, but for me, that’s all good stuff.

I go for my first blood draw tomorrow—a couple of days early since I have to travel for work. Hopefully the blood count will stay high and I’ll stay free of infection so the next treatment won’t have to be postponed. Dr. Poison is doing his magic—I can feel it happening.

It’s a bouncing baby tumor!

Ok, maybe that’s not funny. But it is good news, actually. Turns out that in the tissue that the doc took from my left girl there was as tumor—a very tiny mass, only about 4mm big (if you aren't into the metric system, that's well short of 1/2 inch). It was invasive (for those keeping score—invasive ductal cancer), which means it was invading the neighboring ducts and passageways to the lymph node. AHA! That explains the adenocarcinoma IN the lymph node. I guess it’s hard to say that I was hoping that they’d find cancer in the breast tissue, but I am very pleased that they did. It turns out that the little guy (I think I’ll call it “Fred”—no offense if you know or are a “Fred”) tested positive for a bunch of biological gobbly-gook that means it is very treatable with the chemo drugs that are out there. I guess there is a new drug that is all the rage as well—so I might even get that one. I’ll find out more today…I get to meet the man who is going to poison me for the next 6 months.

Does anyone know what is up with Race for the Cure stuff being all pink? I’ve run the race several times, and I KNOW that pink is the color of choice…but why does it have to be pink? I am not a fan of pink. Miss Dorothy (the little lady who previously owned my house) was apparently a fan—so much so that 80% of the interior of the place was indeed pink (keyword WAS). I’m just not sure how to take it. Pink is feminine. Pink “represents” everything girly. Little girls want to wear pink dresses. I just find it odd that at a time in a woman’s life when they need to be the strongest they can be, they get pink to wear. OK, I will wear it—Beth noticed on the Komen website that it’s not just survivors that wear pink. From the Columbus website:

sur•vi vor n. - One who carries on despite hardships or trauma; one who perseveres; one who lives through affliction.
Komen Columbus cherishes and honors our Survivors…our heroes. These women and men are our inspiration and light the way in our efforts to eradicate breast cancer as a life threatening disease. It is our promise to celebrate and honor, as well as, provide encouragement and hope to the women and men living with breast cancer – from the newly diagnosed to long-term Survivors, their families and friends.

I’ll get over the pink. I know what it represents, and for that I can deal with it. I actually have a few pink t-shirts…playing Ultimate will do that to you.

"LEFT" means "left"

DeAnna and I are back from outpatient surgery... After some chicken noodle soup and a toasted english muffin with butter, she's now curled up on the couch, doing just fine. She was a trooper (anyone out there surprised?).

Let me rewind a bit and give you a quick rundown of the afternoon: noon arrival at Grant hospital, free valet parking, quick check in at the front desk. We were directed upstairs to the Abulatory Surgery waiting room where we met a VERY pleasant nurse who really knew her stuff.

Grant has a fantastic system for family and friends: she handed me a pager they would use to notify me when D was done that would work anywhere in the hospital AND the public library across the street (BONUS!). In the waiting room, they also have a computerized patient status system mounted to the wall. In short, DeAnna was a assigned a patient number and I could use to check where she was in the process simply by finding her number in the appropriate column on the monitor (ie waiting to be checked in, surgery, recovery, etc)- think ariport arrival/departure monitors- BRILLIANT!

We barely had time to take off our coats and have a seat in the waiting area before a volunteer came to whisk DeAnna away to get her prepped and ready to go.

About a half an hour later, I was permitted to go back to the prepping area with her. There, I found her all gowned-up, covered in warm blankets and in good spirits. (They had also marked the word "LEFT" right below her collar bone on her left side, in case they forgot where they were supposed to go once they had her sedated and could no longer ask HER, I suppose. Where's my camera when I need it?!?) We were able to sit and giggle together for about a half an hour before they whisked her away a final time to surgery.

Couple of hours later, I was paged, informed by the friendly nurse that she was out of surgery and doing well. She pointed me to a small private room where I met with Dr.Liang, her surgeon, to get the official scoop.

The results are as follows: the port went in easily. No problems there. As planned, Dr.Liang also performed the excisional biopsy, removing a hardened lump from DeAnna's breast, as well as a bit of surrounding tissue. She had a pathologist waiting right there to do an on-the-spot test of the tissue. Much to Dr.Liang's surprise, it came up negative. Benign. No cancer found.

Hm. Crap.

So where does DeAnna proceed from here? Dr.Liang is... well... stumped! She is still recommending following through with the chemo, treating this as occult breast cancer; attack this stuff wherever it's setting up shop. DeAnna still has to tough it out through a few more tests (the painless ones, at least- another MRI and ultrasound) to make ABSOLUTELY sure they're not missing anything before they get started with the chemo. So the plan has not changed, post-surgery.

Worst case scenario is that DeAnna has a mastectomy some where in her future. But one thing at a time: more tests, chemo (bye bye eyebrows!), surgical removal of the offending lymph nodes.

WHEW.

DeAnna says "hi" from the couch, by the way :) She just informed me that "the only thing that hurts is my boob!" Yeah, that's going in the blog, too :)

Needles, schmeedles

Saw the doc after all of those tests. I have to admit that I spent the weekend not very happy. OK, yeah, that sounds odd. But I wasn’t happy to have been through a round of tests and then have to sit tight for an entire weekend. It’s not even that I had to deal with the worst-case-scenario running through my head. Rather it was just the not being able to do anything (again). But Monday came, and I was in to find out where things stood...

She was incredibly positive. The tests all came back really great. The CT scan was clean. The MRI showed some things, but hey, we knew there might be something. She checked out a few of the areas with her portable ultrasound right there in the office. The only spot that still worried her was the area around where the calcifications were found on the MRI. The bone scan was also clean—and that was a huge relief. OK, back to the great unknown, but at least the worst-case-scenario was NOT happening. For now, the assumption still had to be that the primary location was something in the breast tissue. I questioned the doc on several things, but my biggest concern was determining the primary location. She was confident that it it’s NOT lymphoma (of any kind); the cancer cells from the lymph node biopsy showed adenocarcinoma cells. These cancer cells do not originate in the lymph nodes.

Stereotactic biopsy… So I’m not sure I can explain a lot of this in words. In fact, they gave me a diagram showing how it works. I again wound up on my belly on a table, with the area in question poking through a hole in said table. Underneath that table was a unit, similar to a mammogram press, complete with xray. Here is where it gets dicey to explain the details. Let’s just say that after 5 or 6 tries at getting the position correct, I was finally told to hold still. This, of course, with my left girl in a press and my body contorted. I had to breathe very carefully to ensure that inhalations didn’t reposition me such that I’d have to go through the set-up over again. Here I stayed, for some 30 minutes. During that 30 minutes my boob was numbed, stuck, and plucked. After all was said and done, they had 12 tissue samples, some of which in fact had the calcifications that were seen on the mammogram. I left the office bruised, stunned, numb, and sore. I can say compared to that, a mammogram is nothing.

The call I received from the doc concerning the results of this biopsy—DCIS, or ductal carcinoma in-situ. Simply stated, these cells are precancerous cells that haven’t moved anywhere. This of course adds to the confusion—I have cancer cells in my armpit that came from somewhere. I did some of my own research as well, and it does seem that these cells CAN become invasive and move. It’s highly likely that there is a small area that is invasive (and moved on to my lymph node). Have I mentioned that I like my doc? We have spent a few conversations over the phone—a nice thing that doesn’t require me to keep going in for consults in her office. Over the course of these conversations, we have laid out a plan for the situation—chemo followed by surgery. OK, it’s not exactly that cut and dry, but close.

So tomorrow (Wednesday), I’m headed in for out-patient surgery to get the port put in place. This port will help with the administration of chemo drugs. It gives a semi-permanent, direct line to a vein. The stick at each chemo treatment will be into a receptor on the port that then travels into the vein. Saves the arms and keeps me from looking like a heroin addict. Along with the port placement, the doc has decided to do part of the other surgery—she’s going to remove a piece of breast tissue where the other biopsies have come from (called an excisional biopsy; it will be about the size of a quarter). It is likely that the cancerous area is small enough that they have just missed it with all of the needle pokes. As nice as it would have been to just go straight to this (to avoid all of the needles), it is encouraging that whatever is in there isn’t large enough to hit directly with a needle stick. Strangely, I am hoping for a positive test result on that biopsy. The mystery will be solved, and I’ll be ready to start getting the chemo treatments. Have I mentioned that I like my new hair cut?

Standardized Test Practice

Tests, tests, and more tests. It’s been over a week since I had these tests, but I realized something about that today. It least was a time when I felt like I was DOING something towards dealing/treating/whatever. The last week or so, I’ve been playing the waiting game. There is kind of a plan of attack, but it’s about getting all the ducks in a row to get it started.

The tests…the CT scan was first. It was scheduled for 9am, but I had to be there at 7:30am. If you have ever had a scheduled CT scan, you probably know why. You get 2 bottles of something-barium-with-berry-flavor-something or other. It was, well, not as filling as I thought it should be. If I had the equivalent of that in the form of a chocolate milkshake (from Coldstone made with cake batter ice cream), I would have been STUFFED. But within an hour (they give you an hour and a half), I had this stuff downed. Patty and I played a game…OK, it wasn’t really that fun of a game, but she gave me a time deadline to drink part of the cup’s worth. It worked until the receptionist was confused about what test I was there for and yelled at me to STOP DRINKING. After a minor consultation (wherein the receptionist bitched and moaned about how Maurine had failed to cancel something else), I was back to drinking and on track for the 9am scan.

And no CT scan is complete without an injection. Wow, I can’t remember what this injection was, but I do remember it was NOT the radioactive injection (that comes later). Apparently it was some other contrast agent—all running through me making me HOT from the inside out. The tech warned me about that, with the little note that the warmth would travel EVERYWHERE, wherein it would make me feel as though I had wet my pants. “You won’t,” she declared. Whew. I hadn’t brought a change of clothes. Once in the unit and after watching the thing spin loudly and having to hold my breath on the command of a computer-generated voice, it was over. OK, that was easy enough. By the way, that something-barium-with-berry-flavor-something really didn’t taste like anything, so if you ever need to drink it, don’t be afraid.

MRI…BREAST MRI…um, instead of lying on my back in the MRI tube (which I thought was going to happen, so I took a little Xanex to help me through that—no need for panic here!), I had to lay down face first, with my girls appropriately placed in 2 squared areas. Um, they ain’t square. And there was PLENTY of room there. My face was placed in a cradle similar to that on a massage table, and holy cow, there was a mirror down there. With the mirror in place, I could just look OUT of the tube, without having any perspective as to how tight that tube was. Nice—although a little TV or something would have been better. I was hooked up again to receive another injection of something or other (I think this time it was gallium). When it was injected, little syringes (that I could see thanks to that little mirror—see, a TV would have been better) started to move down, slowly pushing that gallium in. It kind of reminded me of some movie where there was an execution scene. OK, perhaps that was the Xanex talking. Despite the fact that I was given no music and the ear plugs were barely in place, I managed through the knocking and pinging of the MRI.

After a night’s slumber aided by the presence of Xanex in my system (not to mention barium and several other contrast dyes), I headed in again for another 7:30am check-in time for a bone scan. In terms of my effort, this was by far the easiest. Checked in, got injected with radioactivity (for those of you keeping count, that’s injection #3, technium-99), and headed to the cafeteria. Apparently it takes up to 3 hours for the radioactivity to stick where it’s supposed to—basically bones (anything with a lot of calcium). Bone scans are GREAT at detecting lots of things about bones—including hairline fractions and the like. Very sensitive, so if anything abnormal was on my bones, it would find it. Patty and I hung out at the hospital—cafeteria, gift shop, lobby—then headed back for the scan. The scan itself was nothing. This scanner was just a moving table with “readers” above and below me—not a tube, like the MRI. It took a mere 15 minutes to drag my body through the reader so the computer could pick up the radioactivity that stuck to my bones. The excess was supposed to leave via my bladder, but apparently I hadn’t quite emptied it. I thought I had, but as I said, the scanner is a wee bit sensitive…

Friends and family beyond belief

I still have not completed the story as to how I have gotten to this short hair. Yes, I know everyone knows WHY I now have the short hair, but there is more...those blasted tests. But before I head into that, I wanted to say that I feel so INCREDIBLY FORTUNATE for all of the people that I have around me. Friends have been sending messages that have stopped me in my tracks. Wow, I miss so many people that have previously touched my life. And it is so great to hear from them again--if even for this reason.

And my family--you guys ROCK. I feel you around me all of the time (as I do my friends), even though you are not physically here.

Thanks everyone. I feel really blessed.

Are you OK with needles?

I went ahead and cut the hair. It's one of those things--you get a wild hair someplace, and you just can't stop thinking about getting it completed. What's the harm in having some friends over to cut your hair while sharing a little wine? Well, you tell me--you can see the photo.

After that mammogram and the ultrasound, I finally had the chance to meet my new doctor--the breast surgeon. It was a little scary--she is part of an oncology practice. She's incredibly nice and very energetic. I like that. She talks through everything--whether she has it figured out or not. That's pretty cool in my book, because then I can pay attention to how she is thinking (and THAT she is, for that matter).

After she checked things out and looked at all the films I brought, she decided that a couple of needle biopsies would be a good thing. I concurred, and she disappeared to go and get said needles. Oh, I hadn't thought that she meant RIGHT THEN. Alright, I can deal with it. Now a needle biopsy like this isn't an exact science. Basically the needle is inserted and moved around while drawing up tissue (cells). Yeah, ouch. It wasn't so much the needles; in fact, I do pretty OK with needles. But that spot was already sore. In the end it even wasn't so much about the stick--it was the pressure that was needed to get the bleeding to stop AFTER the needle was out. I think it's the first time I've ever gotten nauseous purely from pain. But it was these very cells that were taken that were going to determine that I was going to have to lose the hair.

The other end of this visit to meet the new doc involved meeting the new doc's admin. Along with the needles sticks, the doc decided that a full battery of tests/scans would be a good thing--so that she could get as clear a picture as to what was going on as possible. Her admin was apparently new at this--or at least I hope so. MRI, CT scan, bone scan--they were all arranged, starting 2 days later. I actually understood what all this was for. If the needle biopsies turned out positive (for cancer that is), the CT scan and bone scan would help determine the extent of spreading--if any. The MRI was purely an breast MRI (I never knew there was an MRI specific for just boobs like that). Anyway, Maurine had a little trouble keeping it all straight, but in the end, I left the office with 4 other appointments arranged...

Beth and I after Michael had finished up the new doo. 

Right before the hair cut. Yes, that's my kitchen. Why worry about messing it up if it's going to fall out anyway? 

Mammogram or bust
I'm getting my hair cut next week. I hadn't planned on getting a hair cut any time soon...maybe a trim, or at most and inch or so cut off. I've been growing it out for the last 3 years. Once upon a time I would have the stylist use the #2 guard on the clippers, so I'm used to SHORT. But of course, with it that short, it's a little hard for the dude at the cash register to get the gender correct. OK, I digress. I'm getting my hair cut next week.

I decided to go ahead and get it cut of in advance of it falling out. I've recently been diagnosed with cancer. Wow. The big C. It's been a surreal experience at times (that word came from my sister-in-law Jane--it's an accurate descriptor). I knew I had an issue, but the reality that it is cancer came on pretty quickly.

Last fall, I noticed a lymph node in my armpit that wasn't happy. It didn't hurt, but it was enlarged a little. I think I originally noticed it while I was shaving. I "ignored" it; eh, every once in awhile I remembered it was there. It wasn't growing, it wasn't shrinking--it wasn't doing much of anything. It was just there--a smooth, squishy, swollen lymph node.

At my yearly exam (ahem), I asked the doc to feel that node. Yep, it's a little inflamed. She prescribed an antibiotic, told me to watch it, and get back to her if it started to bother me. It did, but perhaps more mentally than physically.

In February of this year, I noticed that the armpit was a bit sore. The lymph node was still swollen but perhaps a little different. I headed back to the doc for another check and she noted that it was indeed different then last time. It felt different. I knew it was different. At this point, it's a little hard to pinpoint what I was thinking. I know just enough biological/body stuff to be dangerous, but perhaps enough to know when something needs some attention. I knew this did. The doc referred me to a breast surgeon--whether that was based on a concern that something bad was going on I'm not quite sure. She did say that since it was painful it probably meant that it was an infected lymph node that might have to be cut out. A breast surgeon would be a logical choice--because of the proximity of the node to the breast area. After calling the surgeon's office, the ball started rolling (really, no pun intended). Before I even had an appointment to see her, the doc sent me in for around of tests--what amounted to an ultrasound and a mammogram.

Now I'm not old enough to have had a mammogram yet. Yea, I had a cyst a couple of years ago, but an ultrasound clearly showed that it was a cyst and nothing more. That cyst wasn't significant enough in my head to warrant going to get the ever-feared mammogram. Yea, I know Oprah did a show where she had one done to show how "easy" it is. I just really had a hard time putting together how my little girls were going to be flattened enough to x-rayed. But the time had come, I was going to have one.

It wasn't too bad. But then again, I don't really have anything to compare it to. I did have to have more "pictures" taken on the left side than the right side--the radiologist wanted a better view of some calcifications. Calcifications are normal and don't necessarily mean anything--good or bad. The ones we were seeing were microcalcifications (as opposed to macrocalcifications). Radiologists look at the shape of them, and a magnification was definitely needed to determine the shape of mine (hence the second trip to the press).

From what I remember, I had probably 8 of them. Little tiny specs infront of the background of what one might know as a radiograph of a breast. They actually shine pretty brightly. In the magnified view, the radiologist pointed out to me that a couple of them were not round. They were almost star-like. He said again that normally these wouldn't be of concern, but with that lymph node, the breast surgeon may want more testing done (she certainly did).

The ultrsound was interesting. The ultrasound technologist found that little booger right away. It wasn't a boy or girl--it was a node that had normal fatty tissue in the middle of it. The edges had lobulations (yes, that is a word). That was curious, and she even found a deeper lymph node that was perhaps a little enlarged (gender unknown). The radiologist came in for a look-see as well, but still, things didn't quite add up. Pain in the lymph node is not normally and indication of cancer. But still--something was going on...