PET scans: full of barium and radioactive glucose!

Is it weird that this song was my earworm during my PET scan last Thursday? I think it was appropriate in some weird way. You can bring a CD to play during your scan, and next time I will bring an entire CD of Pet Shop Boys to see if the radiology technician picks up on it.

Part of the reason I started this blog was to chronicle as many of the typical cancer experiences, from exams to chemo treatments to hair loss and anything else I go through during treatments. When I was diagnosed, I found plenty of websites that clinically describe procedures and plenty of message boards on which patients briefly describe their experiences but I had a lot of trouble finding blogs where patients described what each procedure was like for them. When I could find any first hand accounts, they took a lot of mystery out of the process, which is a great thing.

Warning: I’m going to get all science-y on you for a little bit here to describe what a PET scan actually is and what it is designed to detect.

Before my scan, I found this website to be particularly helpful in understanding the process. PET is an acronym for Positron Emission Tomography and is often used in concert with a CT (Computerized Tomography) scan. The CT scan is probably more familiar. It essentially detects changes in internal anatomy, like the presence of a mass of cells that should not be present (i.e. a tumor). As you go through chemotherapy, the hope is that the tumor(s) you have will shrink and as it does, it may leave behind scar tissue. Since a CT scan can only detect the presence of abnormal masses as a change in internal anatomy but not whether that mass contains living, malignant cells, a PET scan is used to detect the presence of cells that have a higher metabolic rate than normal cells (the cells metabolizing at a higher rate are cancer cells).

Before the scan, the patient is injected with a radiopharmaceutical that is essentially glucose (a sugar) attached to a fluorescent tracer that can be detected by the PET scanner. This material spreads throughout the body, is absorbed by the tissues and the tracer will emit gamma rays for a short period of time. The PET scanner will detect the emission of these rays. Cells that are metabolizing (consuming glucose) at a faster rate will then emit more/stronger rays than those metabolizing at a normal rate. The scanner puts the CT scan images and PET scan images together to form a PET/CT image where the PET portion will show where cells are metabolizing at a higher rate and the CT portion will show where these cells are located in the body. This website shows some images that might be useful to get a sense of what the scans look like.

If you zoned out for the past two paragraphs due to boring science speak, here’s where you can tune back in.

So what is it like to get a PET/CT scan?

First of all, I got a six page booklet of instructions prior to coming in for my exam. Because the PET scan essentially is detecting cells that are consuming glucose at a faster rate, I was asked to stick to a low carb diet on the day prior to the scan. This really isn’t an issue as Jeff is on this type of diet all of the time, as was I until I let cancer be my excuse to eat whatever I want whenever I want, but at least I had a good handle on what to eat that day. I’m assuming they ask you to do this so that you don’t get a false positive on the day of the scan and/or the cells will be more likely to take up glucose if they’ve been “starved” of it the day before, thus giving you a more accurate scan. You’re also asked not to consume alcohol (no problem) and no caffeine. Oh, the horror! Chemo still has me exhausted and while I realize I probably shouldn’t be drinking coffee, it’s the only way I can make it through the day without passing out.

Getting the scan was actually a pretty easy process, although it was long (about 2.5 hours). When I was brought back to the prep area, I sat in a recliner next to another patient. The PET tech placed my IV (woohoo!!) and had me drink a half liter of barium solution, which is not exactly my first choice in a drink. It actually isn’t so bad, so long as your tech/nurse has the forethought to chill the stuff as much as possible. It is not tolerable at room temperature. The other trick is to chug it, quite honestly.

After I drank the first half liter, the tech came back in and injected me with the radioisotope. I don’t know why I thought this but I assumed he would come in with a gallon full of fluorescent green liquid to pump into my veins. In reality, the tech came in with a small heavy metal container that contained a small syringe of clear liquid that didn’t look like anything special. I was hoping to gain some superpowers, like X ray vision or invisibility, but no such luck.

The solution has to work its way through your system for 75 minutes before you scan. About an hour in, they ask you to drink another half liter of barium solution and “evacuate your bladder” before entering the scan room. This was no problem – I had to go to the bathroom so badly by this point, I could barely sit still.

The aforementioned instruction booklet asks you to wear warm clothes but nothing with metal as this will interfere with the equipment. This means no jeans, zip up hoodies, pants with snaps or buckles, and no bras with metal clasps or underwires. If you don’t follow these directions, you have to wear hideous paper scrubs in the scanning equipment. No, thanks.

At my hospital, the CT and PET scanners are in line with one another so I lay down on the moving board and went feet first into the CT scan first. If you’ve had one of these before, you know it is essentially a good sized tube, well above your head (not like an MRI where the scanner is about a millimeter from your face and you feel enclosed in a banging, clanging coffin). I was in there for maybe 15 seconds for that scan.

I was the pulled completely out of both tubes and then suddenly moved through the first and into the second so that only my thighs down were in the second tube. I didn’t really see or hear too much going on but every few minutes the board moved down about six inches so the next section of my body was in the tube. This was done until my head was in the PET scanner, thus completing what the techs called a “thighs to eyes” scan. It was really painless. In fact, I almost fell asleep at the end.

When you’re done, the tech, who has to stay in the room behind the glass and observes your scan files on the computer to make sure they’re getting clear images, comes in to get you. You know that, while they may not have a technical medical understanding of your scan, they know for sure whether areas of the scan are lighting up more than they should be, thus indicating a cancerous mass. They will help you get up off the board and collect your things before you leave.

I was so tempted to say, “Come on, buddy. Please just tell me if you saw anything abnormal on there. I know you know what’s going on. Just tell me whether my life will go back to normal or if I’m stuck with this disease for another few months. Do me a solid.”

I knew though that he wouldn’t tell me anything, even if I asked with a pretty, pretty please and a cherry on top. There’s way too much of a liability risk there. So, I just collected my things and left.

The really cool thing about being there though is that I met four other cancer patients while I was in there. We were all done with chemo or radiation and were getting scans that would determine if the cancer was completely done. We joked with each other about having to drink the barium solution. Carl, a gentleman in his 80’s, asked our tech if he could get a shot of Jack Daniels with his barium. No chance, Carl. We all thought it was ridiculous to make magazines like Self and Weight Watchers the only magazines available to cancer patients waiting to get their scans. It just felt good to commiserate with patients who were in the same place as me. I don’t think anyone really understands what you’re going through like other cancer patients.

So, now I’m waiting until my appointment with my oncologist tomorrow morning to get my results. Jeff is going with me tomorrow, so my oncologist will know I am actually married and not just making it all up. By this time tomorrow, I will know if I’m cancer free or if I need to undergo radiation. Honestly, I’m not all that nervous. I can’t control what that scan will show. There’s nothing I could have done differently to affect the outcome of this scan. It’s entirely dependent on whether the chemo killed the last 5cm of the mass. If I still have cancer, I will get the radiation to zap the rest of it. It will be a pain in the neck but I will do whatever I need to do to rid myself of this disease.

I’ll be sure to contact folks one way or another and if I feel up to it, I’ll post tomorrow or the next day with the results. Please send me all of your prayers, thoughts, good juju, and vibes tomorrow morning!

 

Getting Back to a New Normal

In an attempt to get out and stretch my post chemo legs, Jeff and I went to Boston this past Sunday evening and Monday, Patriot’s Day. Jeff’s mom gave us a pair of tickets to the Patriot’s Day Sox game at Fenway, which we took happily and gratefully. The game traditionally starts at 11am on Patriot’s Day and we didn’t want to get up at the crack of dawn on Monday to get into the city. Plus, driving into Boston on Patriot’s Day is next to impossible and the thought of taking multiple lines on the T (Boston’s subway system) was tiring for me, so we decided to stay over the night before. We planned to meet up with friends we hadn’t seen since my diagnosis for breakfast, head to the game and then meet up with friends afterwards at a local pub to hang out and watch a bit of the Boston marathon.

It was so great to see friends at breakfast and show them that I really am doing well, that I look pretty normal other than the head scarf covering my bald head. The game was a lot of fun – we had a great seats (we were in the infield grandstands, which means Jeff and I were shoehorned into seats designed for Bostonians of 1912, not 2013) and the weather was beautiful, although it was quite chilly under the press box overhang. The Sox won in a walk off, which is always exciting. We met up with our friends about a mile from the end of the race around 2:15pm or so. We were watching the runners and cheering them on, and I started to think that I was beginning to feel somewhat normal again. That didn’t last for long but it wasn’t my health that would disrupt this beautiful day.

For those reading who are not from New England, I feel the need at this point to explain the feeling surrounding Patriot’s Day in Boston, as up to this point, this Patriot’s Day felt like many others. Patriot’s Day celebrates those who started and fought in the American Revolution and it is a state holiday in Massachusetts and Maine. It starts with a re-enactment of the battle at Lexington and Concord early in the morning, the Red Sox always play at 11am and the Boston Marathon begins around 9am and continues throughout the late afternoon. The marathon starts in the suburbs of Boston, in Hopkinton, and ends in Copley Plaza on Boylston St. in downtown Boston. The Sox game usually lets out an hour or two after the top runners finish, but this allows people watching the game to catch runners who start later in the day, usually those who are running for charity. People line the marathon route and cheer on runners they know and runners they don’t, in an event that really brings the city together. If you’re lucky, the weather is seasonable (of course this is New England – last year it was 87 degrees, for example) and it’s a day that everyone in the city just celebrates being out and about after a long winter. It’s something that everyone in the area looks forward to as it is uniquely Boston, and I can’t really think of an equivalent in the NY metro area, where I grew up.

Obviously, this Patriot’s Day was not full of celebration. All of the sudden, several of us started getting text messages asking if we were okay. We had no idea what was going on, so we opened Twitter or Facebook and saw the horrifying reports that two bombs had gone off at the end of the race, just a mile from where we were standing. Suddenly, we noticed news helicopters overhead and we heard that the marathon was being suspended. We then realized the severity of the situation, and a friend of ours offered to drive us back to our hotel so we could get our car and get out of the city. Because I hate feeling like I’m putting people out (and I’m still not always completely aware of/in tune to my physical limitations), I told her we would be fine and we could walk back (over 2 miles without road closures). Jeff looked at me like I had seven heads and said, “We are going – we need to get out of here”. He caught up with our friend, we eventually got back to our hotel and drove home relatively easily. I am so thankful that he was thinking of my health and well being – with all of the confusion and road closures all over the city, I never would have been able to walk back. The “T” (subway in Boston) was closed in critical areas we would have had to pass through and finding a cab was never going to happen. Had we not gotten this ride home, we might still be in Boston.

It wasn’t until we got home and turned on the TV that we fully could see how horrible things were just a mile from where we were standing. It was absolutely horrifying, and I think Jeff and I were both shaken by seeing something like this happen in a city we love and the city in which Jeff grew up. You just don’t think something like that could happen there. It is a beautiful city full of history and passionate people. It’s an energetic city, full of young adults starting out and kids enrolled in one of the many colleges in and around the city. It’s a city that I identify with much more than my “home” city of New York. I’ve always felt at home and comfortable in Boston from the moment that Jeff took me up there with him for the first time. I just couldn’t imagine that the scenes we saw on a street we walk down all the time were actually real.

Looking back at it now though, I think I was able to handle it all fairly well given that I’ve had to face my own mortality very recently. Having cancer forces you to directly face something that is actively and viciously threatening your mortality. You have to accept the fact that your life span is finite and, ultimately, you cannot control when your time will come. I do think being diagnosed with cancer has permanently changed my outlook on events like this.

Over the past few days, I’ve been glued to TV news and social media for any new information about this horrible attack. I look at the first responders in awe and cannot imagine the bravery had by those bystanders who immediately ran towards the blast sites to help the injured. My heart sincerely goes out to the families of those who were killed in the attacks and to those who were injured, especially those who lost their legs. The future will surely be difficult for them, but having cancer also has taught me that people are much stronger than we think. I’m sure those victims will fight to get their lives back to a new normal once they’re able. Anyone who can endure multiple surgeries and the pain surely involved has the strength and ability to learn how to thrive and push forward.

In the meantime, I’m trying to sit still today and rest while eating a low carb/sugar diet in anticipation of my PET/CT scan tomorrow. I’m hoping it will show that the cancerous cells are no longer active and then I can get back to my own new normal.

Seriously hair?!

Okay, little hairs on my head. You and I need to have a serious talk.

When I started chemo and you began to fall out, I did you a solid and gave you a mercy shaving so you didn’t need to endure chemo along with me. Most of you gave into the shaving and fell out with that and/or the next round of chemo. Some of you hung in there though and after the fifth round, some of you began to make an appearance again looking like tiny pin feathers on the sides and back of my head.

So why, 22 days after my last treatment, did so many of you start to bail on me and end up in the bathroom sink? Every time I rub my head lately, I seem to lose more and more of you and I suspect they’re the hairs that hung in there through the end of treatment six. Why leave me now?! When I saw you all there near the drain, I had to resist the urge to scoop you all up and somehow affix you back to my skull. As a patient, you think that once you get through the last treatment, you’ve jumped the last hurdle as far as your hair is concerned and it will all begin to come back without any more casualties. This is apparently not the case.

Now that I’m done with treatment, all I want is a full head of hair again. It doesn’t need to be long – I am totally on board with a pixie. I’d love to have just enough so that I don’t need to wear a scarf anymore. I was fine with giving you some reprieve from chemo and parting ways during my treatments. It’s part and parcel with getting treated, I know. Now that my treatments are done, though, I want you all to come back now! No such luck.

Also, I know I shouldn’t be picky, tiny hairs on my head, but if you could try not to come back gray and wiry, as so many of those brave souls who have returned seem to be doing now, that would be wonderful. Every one told me that my hair would likely come in darker than before, but I seem to be in the minority whose hair is coming back without pigment. I cannot even attempt to dye my hair for about six months after the last treatment because the chemo that lingers in my system will turn you a bright shade of orange. Since I don’t want to look like Ronald McDonald, I’ll have to go without hair color for a bit. Until then, I would prefer that most of you don’t take that quite so literally.

I also know I should be grateful for being alive and relatively healthy, but frankly, I’m tired of being partially bald and being reminded of cancer every time I look in the mirror. So, for now, it would be awesome if you could continue to grow at as steady a rate as possible without falling out anymore. Thanks.

The Cotton Anniversary

The past two years have been really busy and bumpy, to say the least. In this time, Jeff and I moved (yet again), we continued working at our jobs that are located an hour (in opposite directions) from where we live and keep us both tremendously busy, we’ve had amazing times with great friends and family, we’ve laughed a million times together and, on the flip side, we’ve both endured very serious health issues.

But, most important to me, Jeff and I got married two years ago today, which makes today our cotton anniversary. I’ll be sure to lob t-shirts at Jeff when he gets home tonight from work. We have been together for over 13 years all told. 

There is no one else I would have rather had by my side than Jeff while I’ve been going through my cancer diagnosis and chemotherapy. He makes me laugh every single day and will not let me get down. He’s as much responsible for my positive attitude as I am. He has refused to even let me think about anything but a cure. He’s certainly taken this whole “in sickness and health” thing seriously and I couldn’t be happier about that. Happy Anniversary, Jeff!

 

Patience is a virtue, or some such thing

My last 21 day round of R-CHOP will be finished running its course on Friday, and then it will just be a matter of letting the chemo work its way out of my system so there’s not much to report on the treatment front for now. My hair is even slowly beginning to grow back, although I still definitely look like a fuzzy bowling ball.

So why do I feel like I’m losing my mind and all control over my life?

Because I’m just waiting for the PET scan and its results later in the month. Nothing to do but twiddle my thumbs every day until then. I feel like I’m not doing anything productive and at the same time, I can’t plan for anything in the near future because I have no idea whether I’ll be getting radiation in May and it’s all driving me nuts.

I’m the type of person who hates (HATES!!) having my routine and plans up ended by something unexpected. I am definitely not a “go with the flow” type. I like to know what to expect and plan accordingly. I also like to know what my life will generally entail in the near future. Right now, I can’t really do any of that and it’s driving me nuts and giving me a good deal of anxiety.

You would think that getting a cancer diagnosis at the age of 30 would make me realize that you cannot plan for some things in life and your life can dramatically in the matter of a few hours. I acknowledge that this is the case, but I definitely don’t have to like it. Plus, even though cancer threw a major monkey wrench into my life, I didn’t really have a long period of uncertainty as most patients do while they’re being diagnosed and setting up a treatment plan. Everything happened relatively quickly for me as I went immediately from learning I had cancer to getting treatment, so this is really the first period of uncertainty that I’ve experienced as a cancer patient. 

After getting diagnosed, I found I actually liked the stability of the chemotherapy schedule. I knew for sure that I would have six rounds of chemotherapy that would each last for 21 days. I knew for sure that with every treatment I would go to the outpatient center, see my doctor, have blood drawn, get my treatment, go home to feel sick as a dog for a few days and then recover until it started all over again. There was a certainty to that routine that I enjoyed. It also made me feel like I was being productive and was contributing to the healing process.

Now, the chemo drugs will just be working their way out of my system while I wait for the PET scan that will determine the next step. In the meantime, Jeff and I had to postpone a trip to Nashville to visit friends, I can’t say for sure whether I’ll be able to visit my parents in NJ while Jeff goes to a job training session in Philadelphia later this month, and we had to put off a few other things until at least June because we don’t know what May will bring. I really don’t like this uncertainty one bit.

I’m not really even nervous about what the scan will show. I’m mentally preparing for the idea that I’ll need radiation. If the scan comes back clean, I will have a pleasant surprise. What I’m really dreading is the time between the scan and the appointment with my oncologist when I will get the results. The imaging center called to schedule me for a scan on April 18th and my appointment with my oncologist is April 24th. Those six days are really going to be rough.