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.
I suppose two cuts above might be more accurate, just above my right collarbone.
Wednesday night we headed back to the tri-state area, once again on a delayed flight. Jet-setting Kai was wonderful and slept from take-off to landing for a third flight in a row. I am so thrilled that she has travelled so well up to this point. This back and forth business would be infinitely more difficult if she was a maniac on airplanes. Hopefully our good luck with Kai flying stays with us.
Yesterday I was on the OR schedule for late afternoon. I began fasting, including no water, at midnight the night before. Needless to say, I was feeling pretty crummy by the time I walked into the operating room around 4:30 pm. As the nurse started my saline IV drip, I commented that I was pretty excited about it because I thought it might help with my dehydration.
I really wasn’t upset in this picture, I was just being overly dramatic for the camera.
It was my first time in an operating room and I was quite impressed by the whole experience. I have to say that everything at Sloan-Kettering has been top notch, so it is no surprise that I had a great experience, all things considered.
I started off in a pre-surgical prep area where they had me change into a gown, took my vital signs, and autographed the biopsy site. When the operating room was ready for me, a nurse walked me down the hall to the room. It was pretty odd walking into the operating room, you don’t see it happen that way on TV.
I went in and met everyone who would be working on me; no less than seven people between the doctors, nurses, and pathologist. As we did introductions, they asked me to climb onto the table where they fitted leg massagers onto my lower legs and covered me with a heated inflatable blanket. With all of that getup in place, they pulled out a strap and began to restrain me. I’ll admit, that part was a bit strange, but part of the protocol I suppose.
I asked not to be sedated, but they insisted on keeping the anesthesiologist around for just in case. I was happy about that later on, but going into this I figured that if I could have a baby without an epidural this should be a piece of cake with a little lidocaine.
After they prepped the site and got to work, I was thinking that it wasn’t so bad. I could feel a lot of pressure, some pinching, stinging and whatnot, but not too bad. I felt encouraged when I heard the doctor passing off a sample to the pathologist. After some discussion, they decided to take one more sample before stitching me back up. By that point I could feel the stitching a bit more than I might like, but I decided to sit tight since it was almost over.
Or so I thought.
A few minutes later the pathologist reported that the samples were benign. Good, no?
No. Undeterred, the doctor decided to open me back up, dig a bit deeper, and go for more. By then, I wasn’t sure how much more digging I could handle. I was having trouble staying still when I felt the zaps of the incision being cauterized. I asked for some sedation. I kind of felt like I was wimping out, but at the same time just didn’t care anymore.
Finally, after about two hours in the OR, they decided that sample number three was good and stitched me up for good. As we expected, the preliminary diagnosis is Hodgkin’s lymphoma, we are just waiting to find out what variety of Hodgkin’s it is.
In some twisted way, it was a successful trip. Now we’re back to the waiting game until Tuesday when we meet with the oncologist.
It was a really strange feeling when the surgeon told me what I had assumed from the get go. Kind of surreal. I was expecting it, so it wasn’t a devastating blow or anything, but it still doesn’t quite feel real. This isn’t something that happens to me, or even anyone I know for that matter. It is something that happens to a friend of a friend or someone with a vast degree of separation from me and my life. So far, I feel like I’m dealing with it pretty well, but I hope that isn’t just because it hasn’t fully registered yet. I guess only time will tell.
No, Duke didn’t come with me.
Yesterday was PET scan day and a very exciting one at that. [Funny how excitement can take on so many forms.] It was pretty easy, really. I chugged a liter of raspberry flavored contrast [which tasted far better than my glucose tolerance test syrup from last fall], napped in a recliner until it was my turn, then moved myself to the scanner for my last half hour of nap.
I was not expecting to hear anything back about it until next week. Fortunately, I had the awesome surprise of being able to do a brief review of the scan with a doctor just a few hours later. The results: It appears that the mass in my chest is the only one. What excellent news!
Unfortunately, it is noticeably larger, like just by sight, not even with measurement, than it was two weeks ago on the original CT scan of the area. I still find that part hard to believe.
Earlier in the week when Chris and I were running I told him that I could swear that it was harder to breathe and that I was sure that thing was growing. We both decided that I was letting it mess with my head and dismissed the idea that it could grow noticeably in such a short span. After all, I am notoriously bad at running in temperature over 60 degrees. Add in the Bob and a few hills and it was no wonder that I was struggling on my last few runs.
Based on today’s pictures, it seems like I was right about it being harder to breathe. The tumor is pushing on my trachea, compressing it to about half of its normal diameter in one place, some degree worse than when that was originally noted a few weeks ago. Pretty crazy stuff.
If I’m able to keep up with my running at all I am going to totally smoke Chris when my airway is back to normal!
As expected, I ended the day still not knowing what ‘it’ is. I can deal with that for now, especially since I now know that ‘it’ is alone.
I’ve been absent from blogging for the past few weeks because I have had something on my mind and I wasn’t quite sure how to talk about it or if I should talk about it at all for that matter.
The short story: I found out last week that I have a fist sized tumor in my chest, most likely Hodgkin’s Lymphoma. Obviously I am concerned, but I remain optimistic; in all likelihood it is fairly treatable.
The long story: About three weeks ago I noticed a swollen lymph node just above my right collar bone. Naturally, just like I would do with a running injury or any other weird thing that happened to me, I began to Google. Dr. Internet is your friend, right?
In this case, I suppose that is a true statement.
Chris was in India and, other than tending to Kai, I had nothing better to do than spend hours on the internet scaring the crap out of myself. By Monday morning I was so convinced that the hard, swollen, unmovable lymph node in my neck coupled with night sweats (also a symptom of breastfeeding mind you) were symptoms of Hodgkin’s Lymphoma that I was counting down the minutes until I could call and schedule an appointment with a doctor.
Not having a primary care physician in town, I began making random calls to doctors begging them to see me that afternoon. Most were not accepting patients, but, by some miracle, someone agreed to see me. He initially seemed to think that I may have picked up some persistent, low grade infection in India, but decided to schedule me for an ultrasound of the area just in case. The ultrasound did not yield much information, but it did look abnormal enough for him to refer me to an ENT who ordered a CT scan of the area.
Have you ever had a CT scan?
When I went in for mine, the tech told me that he was going to load me up with iodine. He warned that as the iodine circulated through my body it would first taste bad, then make me feel like I wet my pants but not to worry because I really wouldn’t have wet my pants. [Ugh, more pant wetting? Maybe most people don’t wet their pants, but I probably will I thought.] His warning was dead on. It tasted bad, then I felt like I wet my pants. I am happy to report that I did not wet my pants. Sometimes it is the small things in life.
As I left, I rather cavalierly commented how it was probably stupid that I was there in the first place. After all, I’m a healthy young person. Most of us would have just ignored that little bump and moved on with our lives. Here I was paying who knows how much to have 3D pictures taken of my collarbone.
I can’t imagine what was running through his head at that time.
The following morning the ENT’s nurse called me back to tell me that they found a rather large mass in my neck and upper chest, but they were not sure how large as it had not all been captured in the CT scan. She wanted me to go back for another scan.
Um, wait, what?
Naturally, I tried to dismiss it. After all, I was headed to Lake Tahoe that evening and they were supposed to get hit with a killer snow storm.”Would it make much of a difference if I follow up next week? I’m supposed to go snowboarding this weekend.”The nurse encouraged me to cancel my trip. Assuming that she had not heard about the feet of fresh powder that were supposed to be dumped in the Sierra’s over the weekend, I protested. She again encouraged me to cancel my trip.
A few hours later when I arrived for CT scan #2, the same tech was there.”Yeah, yesterday when you were leaving we knew that you would be back, we just weren’t allowed to tell you.”
That whole not allowed to tell me (and not allowed to just do a bigger scan right then and there for that matter), kind of bugs me, but I suppose that it doesn’t matter in the long run.
After more scanning and a non-invasive biopsy I still have no firm diagnosis and I have come to New Jersey where my uncle has called in the big guns for me. I am so thankful to him that I can’t even explain. All signs point to the mass being Hodgkin’s Lymphoma, but we still don’t know for sure. I plan to work with a Lymphoma expert at Memorial Sloan-Kettering in New York that my uncle connected me with and, unless someone tells me this is not the case, I remain confident that I will emerge from this situation sometime later this year, relieved to have it all behind me.
So where does all of this leave me? Well, it leaves me feeling very fortunate.
I actually went in to have a doctor look at the swollen lymph node. He took me seriously. I have the means and geographic flexibility to go to one of the best cancer treatment centers in the country. I was fortunate enough to have my uncle connect me with one of the top Lymphoma experts in the country. I will get to spend more time with my family than I ever imagined. I will get to watch Kai much more closely over the next few months as she continues her metamorphosis from a colicy, screaming baby to a smiley, cute baby.
I have no delusions; this isn’t going to be easy and it is not the ideal way to realize how fortunate I am, but with Chris, Kai, and the rest of my family I’ll get through it.