Tag Archives: Lymphoma


So I got four tattoos yesterday. Wild and crazy, right? I guess not, but certainly something that I never expected to do.

In the seven weeks or so since I posted last, I’ve had a lot going on. I can’t seem to name many things that I did in that time, but I can tell you for sure that I’ve been going non-stop, full throttle all day long and flopping into bed exhausted at the end of each day. Let’s see…

Shortly after my last post, I completed chemo treatment number seven. I can’t recall if it was a “good” one or a “bad” one. I guess I’ll consider myself lucky that it doesn’t stand out in my mind as much as treatment number four does. ::shudder:: In the week following treatment number seven, I decided to get my act together with running again. It was brutal. Worse than third trimester running.

Unfortunately, my running came to a grinding halt just days after I started at it again when I got a bit too confident on my mountain bike. [Note to self: The full face helmet does not protect your whole body.] My ride was feeling a bit too good as I careened down a winding stretch of single track, patting myself on the back for almost keeping up with Chris and Alex. I was on top of the world.

Until I wasn’t.

Instead of one of those slow motion bike wrecks, this was more like biting it on a snowboard. The kind of snowboarding fall where you catch an edge and simultaneously smack your face into the snow. [What just happened?] If you have gotten on a snowboard even once, you know exactly what I’m talking about.  

One minute, I was riding my bike. A split second later, I was flying through the air in a perfect trajectory to slam, knee cap first, into a rock. I immediately decided that I couldn’t move. Someone was going to have to carry me and my bike back out of there. Then I gave a second thought to the image of Chris carrying his broken bike back through miles of this same trail a few summers earlier and I decided to get back on the horse and hope that those guys had waited for me somewhere down the trail.

Long story short, my knee was pretty badly bruised and quite painful for about three weeks, so running got put on hold for a while. Fortunately, it is mostly back to normal now and I have been running pretty regularly for the past few weeks.

About a week after my bike wreck was another significant event: my eighth and final chemo treatment. I can’t even put into words how relieved I am to have that behind me. Even the thought of having an IV makes me nauseous. Blet.

I’m nearly four weeks out from my final chemo treatment and I have reached a milestone almost as important as finishing chemo itself. My hair has gotten long enough and thick enough that I have started getting a ton of compliments on it. Earlier this week I even had a stranger pay my check at a restaurant because he liked my haircut. A stranger probably twice my age, but still. I’m amazed that I get much more positive feedback on the hairstyle that I never wanted than I ever did on the style that I maintained for years. I wonder if I had really bad hair before but just didn’t know it? I don’t especially care. Good, bad, or ugly, I’m aiming for long hair again just as fast as it will grow.

In running news, I’m still dreadfully slow, but much improved from a few weeks ago. On my first “run”, I use that term loosely, I struggled to maintain an 12:35 pace. As I expected, after pushing through a few frustrating runs, I am improving a lot and have already shaved about 2.5 minutes off of my (un?) comfortable pace. If I keep at it, I’m sure that I can get back to a level that I will be satisfied with.

So back to the new ink. As you may have surmised, I went to New York yesterday to get set up on the radiation machine and I came home with four tattoos. They are just tiny dots, smaller than a dot from a ball point pen. One is used to aim the radiation beam, the other three are used to triangulate my position to make sure that I am in the exact same spot for each treatment. Way more hard core than barbed wire. Duh.

The Sunday before last, Chris and I went for an early morning mountain bike ride, then out for brunch. After we returned home, he made eye contact with me. “Should we do it before you take a shower?” I nodded and headed out to the back porch. I wasn’t especially excited about this event, but my hair was looking especially scraggly and, as he had promised to do when my hair looked too bad to keep hanging onto, Chris was offering to shave my head. After enduring more than six weeks of shedding, the realization that it was time was equally traumatic and therapeutic.

When Chris got started and I watched the first few clumps of foot long blonde hair fall to the ground I began to cry as it suddenly became real. After allowing myself to cry for a few minutes, I decided that I needed to stop. Crying about it wouldn’t change anything and, in the scheme of things, I really didn’t have that much to be upset about anyway; there are so many people who have way bigger problems than a bad haircut, and, in all fairness, Chris did a really good job so I did not even get a bad haircut.

Monday morning came and I was faced with the daunting prospect of wearing my wig. I stayed awake for a good portion of Sunday night reading tutorials about how to tape or glue on wigs. In the preceding weeks, I had spent outrageous amounts of money not only on the wig and shipping and handling to have the wig recolored (gratis), but also on a collection of glues, tapes, solvents, and skin preparations to make wig wearing possible. To my surprise, when the time came, I just couldn’t do it.

I spent most of last week wigless because it just seemed more practical for my lifestyle. I could not imagine standing in the bathroom at work using a solvent to remove my wig before changing into my running clothes at the end of the day. I also couldn’t imagine the fear that would strike each time Kai grabbed a handful of the wig hair. Would she pull it off? Would it rip?

No. Wig wearing did not seem right for me.

Friday night came, and along with it came an opportunity to get dressed up. I had plans to attend a bridal shower being held in the beautiful garden of a historic mansion in town. As I put on my favorite dress and a few pieces of jewellery, there was something missing. Hair. You can’t get all dressed up without hair.

I pulled my wig out of the closet and tried it out again. Just as I feared, it still screamed “I have a wig on”, but, that night, the wig look was more appealing than going without.

Chris double-checked, “Are you sure you want to wear that in public? What if something goes wrong?”

Without even thinking twice, I knew that I wanted to wear it. What could possibly go wrong?

As I drove into town, air conditioning blasting, I noted that the outside temperature was nearly 90 degrees. The setting sun shined brightly though my windows and seemed to undo the efforts of my car’s air conditioner. My skin felt warm, on the verge of sweating, and the huge mass of hair on my head was not helping matters. Hopefully I would not arrive at the shower already looking like a sweaty beast.

When I arrived downtown and stepped out of my car into the warm air, it felt like a sauna. By the time I walked a block or so to the party, I could feel that my head had begun to sweat. For a split second, I worried about my wig, but that thought was quickly forgotten as I began chatting with the other shower guests.

As I got drawn into a long conversation with a few of the other guests, I could feel the sweaty head intensifying and I swore that the wig sliding around. We continued to chat, but I could not give my full attention to the conversation. I became fixated on the wig. Was it still in place?

Finally, I had an out. Our hostess asked us to wrap up our conversations and take our seats at the tables. I made a beeline to the bathroom to check my hair. It was obvious to me that it had slipped way out of place exposing a tiny bit of buzz cut at my hairline.

Had anyone else noticed? Was I the only person examining my hairline so intensely? I will probably never know and it doesn’t really matter as this single incident has made me too leery of wig wearing to venture out in public with it again anytime soon.

It is both amazing and ridiculous to me that, throughout this ordeal, the saga of real, fake, and missing hair has been as, if not more, traumatic and thought consuming than anything else. Fortunately, parting with my hair has, in large part, helped me get over it and move on.

Counter to my original expectations, I doubt that I will have the courage to break the wig out in public again.

Last week, as I realized that my hair shedding was accelerating at an alarming rate, I got real with myself about my new wig. I didn’t like it. The cut is dead on for my hair cut, but the color was all wrong. It was a far darker shade than my hair has ever been and I was not looking to become a brunette.

Like any rational person would do, I started freaking out.

Finally on Thursday, days later, I realized that I should seek help. I placed a call to a salon at “home”, told my sob story, and asked if they could help. Not only was I asking for a major color change, I was asking for next day service from the owner of a very busy salon, but he was the only person who I trusted to do this because, in my mind, it was a one-shot deal. After a few short phone calls, we decided that I would overnight the wig to them to be highlighted on Friday.

I carefully tracked the package on Friday morning, to see that it arrived ok. After it was delivered, I felt so relieved to know that I was going to have a wig that somewhat resembles my hair color and I excitedly awaited its arrival back in Indiana on Monday.

Monday morning, I obsessively tracked the package until 9:16 AM when it finally showed up as “Delivered” on the FedEx website. At noon, when I arrived home to check it out, I couldn’t find any package at my door.

I walked the whole way around my house. It was not at any door.

My heart started racing. Have I mentioned that I ordered a custom made wig from New York? It took almost two weeks for it to arrive. I wasn’t exactly feeling like I had another two weeks to work with.

I immediately called FedEx. The problem is, that you can’t call your local FedEx office directly. The woman I spoke to at the national number said that my local office would call me back later. Wait, what? I need to know what happened to it now!

An hour later, my local FedEx office called me to tell me that the package was likely delivered to my house number on a different street. Well can you go get it? All of the couriers were busy. I was told that they would investigate the next morning. This didn’t sit well with me. The longer my package went missing, the less likely that it would turn up.

I frantically called the national FedEx number back. They were not able to offer much help. Within a few hours, I decided to drive over to my local FedEx office and make another appeal for help. Nothing.

In a desperate maneuver, I put the other address into my GPS and headed out to a country road southwest of town to retrieve the package myself. I counted down the house numbers as I got close, then I realized that the address didn’t exist. What?

If my heart was racing earlier when I realized the package was missing, it was all but leaping out of my chest now. For some reason, instead of a rational maneuver like crying about it, I decided to keep searching for my package.

I checked up and down that street before deciding to head to my own street to look just in case. I’m sure that my neighbors now know me as the crazy lady who creeps down the street, neck craned out the window, staring at thier houses…

… but it doesn’t matter. On the sixth porch in my neighborhood, I found my package. Luckily it was our friends’ porch; I would have gotten my package anyway if I had been more patient, but I did not know that when I started my search.

Now this whole thing seems silly, but it was a hugely traumatic event at the time.

In case you’re wondering: IThe wig color looks fantastic, but I have not shaved my head yet.

I still owe an update on the ducks. Coming soon!

Yesterday I promised that we would talk about ducks next, but I changed my mind. I want to talk about the Indy Women’s Half Marathon instead. If you have followed my blog comments extremely closely (Seriously, you don’t?) for the past few months, you might recall that I was egged on to sign up for the Indy Women’s Half Marathon on September 1. If you don’t recall that, now you know.

I had mostly forgotten about it until yesterday. Somehow, as I thought about the fact that I have not run in a week, the race sprang to the forefront of my mind. At first, I dismissed it. After all, I’ll never be able to PR considering the circumstances.

A few hours later, I got to thinking about it again. No, I didn’t develop some delusion that I could PR. I’m not even sure if I will be able to run the whole thing, but I did decide that I should run it. Or as much of it as possible anyway. I think it will be good for me to have a training goal, even if it is just to finish the 13.1 miles, and really, 13.1 miles is not all that far anyway. This should be totally doable.

So, there it is, I’ve put it out there and I’ve made up a very conservative training plan running three to four days per week. I think that four runs per week is an attainable goal, even on ‘aftermath of chemo’ weeks.

As for this week of non-running, I think I just need to write it off and regroup this weekend. This week my hair has been playing games with me and, in an effort to preserve it until Chris gets home, I have been trying not to stress it at all. This means that running was out because my bouncing ponytail would rip it out unnecessarily before he got home. I was also nervous that the extra shower that running precipitates would cause even more hair loss. In an effort to regain control of my life and resume normal activities, I have determined that the hair has to go. In fact, I have decided that less hair should actually enhance my ability to run as I won’t have to deal with washing and drying it each time.

Ahhh, the silver lining. I knew there was a silver lining.

According to Runner’s World, here’s the plan for the next 10 days or so.

It is kind of a low ball plan, in the back of my mind I intend to be an overachiever and go a bit beyond this. I’ll let you know how that works out for me. Up until the hair loss thing stopped my running dead in its tracks, I was running quite a bit more than this plan calls for. In theory, one week off shouldn’t be a game changer.

For real, a duck update coming soon.

So my second round of chemo comes with mixed reviews.

On a very positive note, I did not experience the extreme exhaustion that I did with the first round. The Sunday and Monday after round one it seemed like too much effort even to lay in bed. This time around I was an active participant in garage clean out day on Sunday and I was a productive member of the workforce on Monday.

On an equally negative note, I’m pretty sure that my hair is falling out, although it is not nearly as spectacular as I expected it to be. I imagined that it would leap off of my head en mass, maybe all at once under the pressure of the shower head or perhaps I would just wake up one morning with no hair. Instead, it seems to be taking its time, which is almost torturous and has left me torn between buzzing it all off to get it over with and holding out as long as possible to see if I don’t end up losing that much. I’m sure I’ll keep you posted, as I know that the world is dying to know the fate of my hair.

In all seriousness, I am trying to hold out until Friday to shave my head because Chris is off travelling the world again and I prefer to have him do it for me. We’ll see if my hair cooperates. If not, I’ll have to call in a substitute to wield the clippers because I don’t think I can bring myself to shave my own head. Not so surprisingly, the realization that my hair is falling out is equally, or even more distressing than hearing about the diagnosis in the first place.

Gross but true: I have been Googling ‘ABVD hair loss’ like it is my job and nearly all of the other victims seem to be disgusted by the massive shedding that typically ensues after the second treatment. Now for the gross part – I think Duke and our blue shag rug shed enough each day that I can’t even notice my hair adding to their daily dust bunnies. [Kai, if you read this someday, please know that I do put forth a huge effort to keep the floor that you roll around on clean.]

In other exciting news, it turns out that I am not super human as was evidenced by my white blood cell count on Friday. I was surprised as well. Seriously, I was. I assumed that they would check it and be amazed that my white blood cell count was practically normal. I figured the whole team of nurses would be totally in awe of my abundant neutrophils, but that’s not exactly how things went down.

Part of this whole chemo deal is getting your white blood cells (WBC) checked once per week. Unfortunately, mine have been trending downward even more than expected. Most people have between 4,000 and 10,000 per cubic millimeter. Two and a half weeks ago when I went in for my first treatment mine were over 8,000. One and a half weeks ago, on my off week, I was down to 4,000. When I went in for treatment on Friday, I was more in the neighborhood of 2,000; low enough that the nurses told me that they were surprised that the doctor let me do my treatment.

The upside of my crazy low WBC count is that I’m getting plenty of extra attention. I even scored a Sunday afternoon appointment for a Neupogen injection. Neupogen is a drug that can be used to help boost WBC production and I am lucky enough to get four of them this week. [Have I mentioned that I’m not a fan of needles?] On Friday I get to go back and find out how it worked. In the meantime I’m pretty nervous about this daycare drop off/pick up thing. That place has to be crawling with germs just waiting to wreak havoc on my nonexistent immune system.

As you might have gathered by now, I have been spending a lot of time in this place labeled ‘Cancer Center’. It is still pretty strange to me to be hanging around with cancer patients. I guess I am technically one of them, but I don’t really identify with that group. After all, cancer is something that happens to old people, sick people, other people, I don’t know, just not me. So, instead of including myself in that category, I will continue to attend treatment at the cancer center and I will continue to feel bad for all of those unfortunate people who got dealt a bad hand, but I won’t feel bad for me because I’m not one of them. I just happen to stop in there like six times per week.

All in all, aside from the hair issue, I suppose that things are going pretty well. I’m impressed with myself that I did not have any down days and just generally delighted that I did not feel exhausted in the same way that I did after the first round.

An update on the ducks is coming soon!

Going into this week, I had very low expectations running wise some delusions that I would keep running as if nothing happened. After all, I managed to trudge through three miles last Saturday, the day after chemo, without a notable effort.

Come Sunday, things had changed. We planned to walk the same three miles with Kai and Bob and I didn’t even make it a quarter of the way around the loop walking before asking to turn back. I was wiped out. Wow.

Monday morning I thought that I should make an attempt to go to work. After struggling to make it through the getting ready process, I dragged myself to the car and went in. My ‘work day’ lasted about an hour, at which point I concluded that it was too much effort to sit in the chair and headed home.

I was exhausted and just all around crummy feeling. I felt an awful lot like I imagine that I would if I had stayed out drinking all weekend without any sleep. My brother, who once pledged a fraternity, can probably understand what I’m talking about. I gather from his stories that freshman year at Penn State was not as kind to him as it was to me.

By the time I made it home, I was freezing to death. No exaggeration. Anyway, my not even close to warm enough bed awaited me. I crawled in, with that chilled to the bone feeling that I can usually only achieve by night skiing in the bitter cold temperatures and unrelenting winds of Upstate New York while wearing clothing that is still damp with sweat from a day of riding. This was not a fulfilling experience at all.

I determined that I was far too cold and exhausted even to lay in bed. Unfortunately, I could not come up with a less energy intense alternative. Ugh. To be honest, I might have cried about it if that would not have required me to expend additional effort.

Somehow, I finally got to sleep. Six or seven hours later, I awoke from a deep sleep feeling kind of normal. I tested the waters by doing some chores, then decided to attempt a run.

I use that term very loosely. My ‘run’ was probably 60% run, 40% walk, but somehow, afterwards, I felt more normal than I had in days. In fact, it led to two subsequent, more legitimate, running attempts on Tuesday and Wednesday.

Thursday I planned to run also, but when I discovered that we could do this instead, all plans went out the window.
I think the thing that I am most impressed with myself about is that I got up an hour early on Friday morning to squeeze a run in. It made me remember why I like to run in the morning. Going to work on Friday is so much nicer when you know that you are off the hook and free to do as you please on Friday night. It was such a relief not to have a run looming over me all day. In fact, I just might try the same thing on Monday morning as well!

So I survived treatment number one. That means that, in theory, I only have either seven or eleven to go.

All in all, I would say that it went pretty well. I did not get sick, which was huge. Going into this, I made sure that my bathroom floor was clean in case I ended up hanging out on it. So glad that I didn’t end up using it!

I would say that the biggest symptom that I faced was being extremely tired. Chris and I did make it out running on Saturday, but I came home and took a short nap straight away. Psychologically, the run was very important. Physiologically, the run may have been the tipping point to extreme exhaustion. You know when you are so worn out that your bones just feel hollow? Yeah, like that.

Sunday morning, of course, Kai wanted to get up bright and early, she doesn’t understand why I want to sleep so much. We made it through the day, Chris doing the bulk of the Kai care, but by 2 pm I could not believe that there were five plus hours until she might go to bed. I was toast.

As an escape, I cut our grass yesterday. It seemed like mowing would be easier than holding Kai for hours while Chris mowed. Although I wore SPF 30 sunblock on my face, I still burned. I was warned that I might be more photosensitive than usual, but I was surprised that it was something SPF 30 couldn’t handle. I’ll remember that for next time.

I’m relieved that things went fairly smoothly, hopefully things don’t get much worse with progressive treatments.

Today is the big day. I’m getting my first chemo treatment, so far so good! We will see how I feel about it in the next days and hours. Hopefully I’ll be keeping you posted!

That’s what my doctor told me Tuesday morning as he drilled into my pelvis to take a bone marrow sample.

He was kidding, of course, he followed up with a “well, today anyway”. As far as he can recall, he has done in the neighborhood of 3000 of them, so I was in good hands. Chris was quite relieved that the doctor ordered a bone marrow biopsy as he wanted to cover all of our bases. He may have secretly been curious about seeing medical power tools in action. When it came down to it though, I think that Chris discovered that he was pretty grossed out by watching the doctor extract a bone marrow sample with something that very closely resembled a miniature hole saw. Kai seemed unphased by it and just babbled away in the background.

Tuesday was my first meeting with the lymphoma expert and it went quite well, all things considered. He was able to tell me that it is Stage 2XB, which basically means that the mass is more than just the initially affected lymph node, that it is a bulky tumor, and that I had secondary symptoms (namely night sweats). He sent me off for a battery of additional tests such as another CT scan, a pulmonary function test, an EKG, and an echocardiogram. The CT scan was to assess tumor growth, while the other tests were to establish baseline heart and lung function so that we can monitor whether the chemo is affecting them.

This morning we met with him one last time, at least for a little while, and got the go ahead to start treatment in Indiana as soon as possible. On Monday I will meet with an oncologist at home to see if he is willing to collaborate with the guy in New York and deliver the treatment. I’m fairly certain that he will, if not, I’ll keep asking around until I find someone who will.

I also need to find out if the guy in Indiana will make me get a port. A port is a titanium implant that can be inserted into your chest that chemo can be delivered through. The New York doctor recommended that I don’t get one as he anticipates that I will only receive 8-12 treatments in total, but that decision will likely be made at the discretion of the Indiana oncologist.

Long story short, we finally have enough information to get started, probably in the next week or two. I won’t lie, I’m kind of terrified, mostly of the impending hair loss. If that wasn’t on the agenda I would be feeling pretty good about the situation.

As we headed back to Indiana on Friday I spent a good deal of time researching hair replacement options. Chris seems to think that it is unnecessary, but I want to have at least one option on hand when I need it. Obviously I am quite shallow, as I feel like the threat to my hair is the most upsetting part of this whole ordeal.

After checking out my options, I made an appointment at a place on the north side of Indy with a lady who specializes in fitting and cutting wigs, or, as she called them, cranial prosthesis. Somehow buying a cranial prosthesis sounds less threatening, particularly because many devices by that name are covered by health insurance.

Saturday afternoon, Chris, Kai, and I arrived in a suburban Indianapolis neighborhood and let ourselves into the wig salon. There were tens of wigged heads staring at us from shelves on the wall, we were surrounded on every side. It was beyond weird, I considered bailing immediately upon arrival. The only thing that stopped me was that I know that I will have to put myself in that situation at some point if I want to maintain the appearance of having hair, or even just the option to have hair sometimes. Geez, talk about high pressure.

So, there we sat, in the middle of the room, all eyes on us, discussing the finer points of cranial prostheses. We decided that I would want something hand knotted, all lace, synthetic, blonde, and a bit below my shoulders. [As an aside, can you imagine hand knotting a wig? Talk about a tedious job!] She had just one option available that met my requirements and it only came with a right part. I part my hair on the left. It looked strange, in large part because it was the mirror image of my hair.

We decided not to buy anything. It was such an odd experience and I think Chris and I were both too uncomfortable with the situation. As we drove away, I began to research options in New York. The wig lady had mentioned that she had the best selection in Indiana, she thought the only way to get a better wig was to go to Los Angeles and have a custom wig made. I don’t think a trip to LA is in the cards in the next few weeks, but I was correct in guessing that New York had plenty of custom wig makers. Hopefully I can visit one this week when we go back there. In the meantime I will deny away the likely fate of my hair.

*For my family: Please don’t discuss my hair situation with me. I’m comfortable discussing it on my blog, but I don’t think I’m ready to talk about it yet. I still want to pretend that it won’t be a problem.