A Love Letter to Working Out

I’ve started this post at least half a dozen times since I started my blog. It seems odd to be writing my love letter to working out when the most strenuous thing I’m up for is walking. My left arm is still a little immobile from phlebitis. I have a leukapheresis catheter in my chest that I have to be careful with, and I have a blood clot in my lung that leaves me winded after a flight of stairs. My hemoglobin is low, so I’m often and easily tired. I haven’t been able to work out for nearly a month, since before I went in for the last round of high-dose chemo.

Yet I still feel strong. Throughout the treatment—and now, more than ever—I’ve been drawing on what I’ve learned from my workouts and my yoga practice.

Physically, I did get some compliments on my blood pressure, at the beginning of treatment. Years of trying to perfect the savasana “dead body pose” in yoga helped when I had to stay perfectly still for scans and my radiation mold measurements. I will have to stay in good cardiovascular shape, especially as all this chemo and radiation takes a toll on the heart and the lungs.

But I think I can say that without yoga and fitness classes, it would have been a lot harder to get through all of this mentally. While I thought I was building muscle and flexibility, I was actually becoming stronger in ways I didn’t realize.

In December 2013, when I noticed a small bump that turned out to be two dislocated ribs, I was irritated that I’d have to modify my fitness routine for a month or two. That, of course, has turned out to be more than a year, since those ribs were dislocated by Hodgkin’s lymphoma tumors. I’ve had to take time off from working out, adjust my routines and generally change everything.

In between treatments, when I receive the OK to work out, I do what I can. Sometimes I wonder if it’s worth it, but when I think about how working out has helped me overall, I know that it is. The muscle tone will come and—in the next few months especially—go. But the benefits go way beyond that.

Change is often difficult, but it’s possible. This was probably the first thing I ever learned. I’ve said this before, but I’m not naturally a physically active person. I was a chubby kid and always the last person picked in gym class. Very last—after the kids with asthma and injuries.

It wasn’t just that I wasn’t fit—I’m also extremely indifferent to any kind of sporting competition. That won’t change. I will spend 10 minutes agonizing over a Scrabble word, but I lose interest in winning any kind of sport immediately. You want the ball? Have it. The promise of being left alone is enough for me to surrender. The opening scene to the old MTV cartoon Daria, where she refuses to hit the volleyball and her teammates eventually collide to cover for her—that is pretty much the animated version of me in gym class.

Yet I started working out on my own in high school, first with Cher’s A New Attitude step-aerobics video. (Her outfits are pretty fantastic.) I discovered I kind of liked working out, and eventually found other things I enjoyed—yoga and fitness classes. I’ve tried to make working out part of my everyday routine. Even though I skip a few days, intending to work out every day helped me to at least do it about five days a week.

I’ve also never been a morning person, but managed to become someone who regularly woke up at 5:15 or 6 am to go to yoga or boot camp class. I found I enjoyed this thing called morning, which I’d avoided for years. Also, it was helpful to roll getting out of bed and working out—two things I tend to put off—into one fell swoop of determination. So the night owl and the last person picked in gym eventually learned to be the early bird at class.

The hardest part is what makes you stronger. Those last few seconds in standing bow or being in a plank sometimes seem impossible. That’s when the instructor usually says something encouraging like, “These last few seconds are where the change happens!” Or: “This is the hard part, but here’s where you’re building strength.”

I’ve thought about these words a lot as I near the hardest part of my treatment. A few months of dislocated ribs turned into six months of chemo, which turned into more than a year of chemo and another three to six months of recovery. The most difficult part still lies ahead. Heading to yet another appointment or sticking on an AquaGuard over my chest catheter before showering, I’ve cried and declared, “I don’t want to do this anymore,” and sometimes, “I can’t do this anymore.” I’ve been sliced open and poked and poisoned for a year now, and I’m tired.

But I don’t have a choice. I’ve learned that just when you think you can’t do something anymore, that’s when you need to power through. It’s time to cue “Eye of the Tiger” and do this. The hospital bedside yoga and laps around the floor, dragging my chemo pole with me, will be my one-armed Rocky pushups. Right after the stem cell transplant, I’ll be physically weak and in a bit of a mental fog, but overall, tougher.

Patience. At this point, after a year of treatment, I’m impatient to get this over with already. A month in the hospital seems like an eternity. But I know that things always seem longer at the outset. Sometimes it’s just 45 minutes of boot camp or an hour-and-a-half of Bikram yoga, when I’m not feeling particularly ready to push myself. Every now and then, in the first few minutes, I despair. How am I going to make it through 80 more minutes?

But I do. I had the same feeling when I signed up for a 30-day Bikram yoga challenge. When I marked off those first few days, the month stretching out before me seemed so long.

I have to be patient. I have to draw on the patience that comes from working on the same 26 poses in Bikram yoga. Or the patience from a Kundalini breathing exercise. I can do this.

Encouragement and support go a long way. Almost every day that I’ve worked out or attended a yoga class, I’ve been told that I could do things that I often didn’t think I could. (Sometimes, I felt absolutely sure I couldn’t, but did it anyway.) Eventually, I started to believe it. That’s been helpful for when I’ve had to endure being poked for multiple IVs that give me the heebie-jeebies or sit still for another round of tests.

People in classes have always been supportive—and that also extends beyond the fitness center and yoga room. I’ve met some great friends through working out, and I’ve received such nice messages from my boot camp pals, people I’ve met through yoga and the barre3 community.

Once I finish my hospital stay, I know it’s going to be a long time to regain my physical strength. I’ll be easily tired, and it will be months before I even get back to “normal,” before I can even think about working out. But thanks to fitness and yoga classes, I have the strength, patience and support that I need until I am back to 100 percent.

 

Good News, Unknown News

The good news is that I finally have my hospital admission date: April 13.

I suppose unknown news isn’t really news. The outcome is the same, and things are proceeding as planned. But after the MRI, the doctors still aren’t quite sure what’s lighting up on the PET scan. They think there’s a 75 percent chance it could be Hodgkin’s lymphoma, which is strange, because it’s not in my lymph nodes, but it my pancreas. The other 25 percent is a big question mark. Inflammation? It doesn’t appear to be pancreatic cancer or another pancreas issue, according to the MRI.

There was talk of doing an endoscopic ultrasound and biopsy this morning—in fact, I had one scheduled for next week. But after some thought, it was cancelled. The biopsy would sample only a very small part of the pancreas—possibly not enough to tell if Hodgkin’s lymphoma was present. It also might not rule out other possibilities enough that they could tell what exactly it is. And doing a more invasive surgery at this point doesn’t make sense.

The radiation doctor was going to radiate this area anyway, so everything is going to go as planned. Five days of outpatient radiation begins on April 7, and then the hospital stay and everything it entails begins the following week.

I’m disappointed that there’s still an unknown bit of possible cancerous something lurking as I go into transplant, but I’m also relieved that this doesn’t push back treatment too much. I want to get this over with. I am as impatient as this cancer is stubborn.

Photo note: I have no photo of my pancreas on hand, so here is a photo of my cats taking an IQ test.

Ultrasound and My First MRI

Today I had an ultrasound of my legs to check for more blood clots that could potentially lead to another pulmonary embolism, and I had an MRI, which wasn’t as bad as I’d thought

I get the results of the latter tomorrow. My hope is that it shows no more lymphoma and that the PET scan keeps lighting up because, instead of a glowing heart like E.T. the Extra-Terrestrial, I have a glowing pancreas.

My ultrasound didn’t show up any more blood clots that could travel to my lungs. I’m still concerned that my blood seems to clot so easily, even when my platelets were low. I’ll be off the blood thinner for a little while in the hospital, when my platelets drop post-chemo. I irrationally worry that my blood will just all clot up and stop flowing during this time.

In addition to the good news of no clots, I also got some book recommendations from the person who administered the ultrasound. We got to talking about books, and she wrote them down for me so I can put them on my Kindle for my long hospital stay.

Then I went to have an MRI. I’ve heard that they’re boring and unpleasant, as well as claustrophobia-inducing. It wasn’t nearly as bad as I thought it would be. In fact, I thought it was a little bit better than a PET scan, because my arms were in a less awkward position above my head. Also, I always almost fall asleep during PET scans but not quite and end up groggy.

There’s no chance of that with an MRI. That’s because an MRI is loud. That kind of surprised me.

After I filled out the forms about metals in the body and put on a robe, I was led to the MRI room. When I put the key to my locker, where I’d stashed my belongings, on a counter in the room, I thought I saw candy on the counter.

I haven’t worn my usual gas permeable lenses since this summer’s eye infection, and I’ve been wearing disposable lenses. They’re weighted for my astigmatism, but I can’t see as well, so I don’t know what’s going on a lot of the time. It keeps things interesting.

After I was strapped in, one of the technicians approached with the colorful-looking candy wrapper thing. Irrationally, I thought I was going to get some sort of special candy. Maybe for MRIs you get candy instead of that red drink for PET scans? They were earplugs.

I was a little surprised to see race car stickers on the outside of the machine. Sometimes, the machines are adorned with something to make you feel better. My last PET scan at the Evelyn H. Lauder Breast Center was in a forest-themed room. There’s a mural on the ceiling so when you’re not all the way in the machine, it’s as if you’re in a grove of trees. A few fallen leaf tiles on the floor complete the effect. It’s a nice touch.(For some reason, the last time I was there, it was freezing, so I kept expecting to see that the ceiling trees had lost all their leaves and had icicles hanging from the branches.)

Once I was inside the machine, there were more stickers. I’m not sure if I was in pediatric machine (for short people?) or not, but I liked the array of birds, monkeys and other animals to look at. At my eye level were two pink elephants, a pair of shiny giraffes and a zebra. I decided that, based on his sticker companions, the remaining animal sticker was a crocodile, not an alligator.

Then the noise began and I understood the earplugs. It’s not deafening by any means, but it’s a little like being at a construction site. A friend said his MRI was like listening to Nitzer Ebb, and now I see what he means. With the noises and the animal stickers, it was like being at a modern art installation that I didn’t understand. If done properly, people might line up for hours for this experience—especially when the ’80s video game noises began and my little machine bed began to vibrate, like I was under attack. It was like being in a Galaga ship.

When there was a brand-new noise, I could guess that a part when I had to hold my breath was coming up. Someone would announce that I should hold my breath and then there would be a flurry of noises. When those stopped, the voice would come back to tell me to breathe.

After the first round, they put contrast media into my IV and then I pretty much went through the same routine again. Between the stickers, the noises and holding my breath, there was enough to distract me, so it didn’t feel that long.

I get the results tomorrow morning, and then I have a radiation oncology appointment in the afternoon. Fingers crossed for good news.

Stolen Lives

Today I was editing a business story, and within the article, there was a mention of the someone’s death. As I Googled for more information about the business, another article revealed that the death was caused by cancer. There was an ache, a discovery of a tumor and spreading cancer, followed by chemo and radiation, which failed in this case.

It was sad and unfolded in a few paragraphs. It seemed abrupt and unfair, as cancer often is.

I thought about why cancer is so feared and reviled. It sneaks up on you. Symptoms sometimes build up for months, but they seem like nothing. It seems as if all of the sudden you’re no longer someone with a weird bump or a twinge of pain, you’re someone with cancer.

Then your life is stolen. Often, this is piece-by-piece, with time at doctors’ appointments and in machines and hooked up to bags of chemotherapy drugs. There are the days spent not feeling well or time sleeping. Also stolen are the things you can’t do, whether you don’t feel up to certain things or aren’t supposed to do them. Time not spent in the sun. Time spent not traveling. Events missed, because you’re not sure what’s going to happen. I’d love to, but I have cancer.

After it steals your energy, it often goes for your hair. Some people lose even more to surgeries, parts and pieces that won’t grow back.

Your “normal” life is stolen and it’s replaced with an often-unsatisfactory facsimile, a watered-down version. Chunks of time go missing to hospital stays. Sleep is sometimes constant because of drugs and fatigue and then elusive because of worry and stress.

But some people don’t get their lives back at all. This story was a sad reminder for me. It put things in perspective.

Better News?

Well, I still have that pulmonary embolism. But my doctor called today to say that after the radiologist took a look at my PET scan, there’s a chance I might be lymphoma-free after all!

This is good news. Overall, the doctors are pleased. However, I have a glowing orb in my abdomen. I have an MRI scheduled for Thursday so they can get a better idea what’s going on. I don’t know much about MRIs, other than they’re boring. Someone I know said it’s like listening to Nitzer Ebb while being still for a long time.

My pancreas has been mentioned. I’m not sure what its problem could be.

Maybe the MRI will find an ingrown twin. Or discover why I have an extra rib. (After more than a year of endless appointments and tests, no one has mentioned it, so I guess it’s not a big deal. Maybe I’ll finally ask about it.) Maybe it’s the source of my power. Maybe it’s untapped potential. Maybe it’s my tiny, shriveled soul. Or gum I swallowed, though I’ve swallowed maybe only a piece or two over the years.

This does possibly change the course of my radiation treatment, so everything is on hold for a bit until Thursday and Friday, when the doctors go over what they find.

So I’m still not sure when my hospital stay begins. I am meeting with my doctor on Friday to go over the MRI and ultrasound results. (I’m also going to get leg ultrasounds to look for more clots, and I forgot to ask if a possible filter placement would delay anything.) If everything goes as they think it will, then I’ll probably meet with the transplant doctor on Monday, and it’s possible I’ll start radiation later that week. So we’ll see.

Odds for staying cancer-free are better if you go into the transplant with a clear PET scan. The best-case scenario is that it is not Hodgkin’s lymphoma anymore, and I just have a glowing belly orb.

UPDATE: A friend says it’s probably a glowing heart light, like E.T. This would also explain why I love Reese’s Pieces. I’ll alert the MRI technicians.

Pulmonary Embolism and PET Scan Results

As I was taught in journalism school, I’m going to put the most important information at the top. I have a blood clot in my lung, so I’m going to take blood thinners. Also, my PET scan showed almost no cancerous activity. I have had two remaining stubborn spots that ignored the ABVD chemo and shrunk slightly with the Brentuximab. Two rounds of augmented ICE finally got rid of the spot in my chest. A tiny bit remains in the belly area, but the good news is that they’re going to proceed as planned, with the radiation and the stem cell transplant.

I’ve been pretty sedentary lately. But over the past week or so, I’ve felt winded—really winded walking up the short flights of stairs to our third-story apartment. I also was really out of breath after running for the bus the other evening, but it was worth it. It was really rainy and windy, and I’d taken a gamble that the bus might be waiting at the stop by the train station. It was, and I had to walk only a block home. I consider taking this risk a great success now that I don’t get out much.

Yesterday, I went to the near-top of the Empire State Building. Friends were in town and they offered to be my tourist beards to this attraction, which I’ve never visited. I now have seen everything in New York City there is to see. (Literally—you can see everything from the near-top, which is considerably cheaper than the absolute top.) You have the option of walking up six flights of stairs or taking an elevator to the observation deck. We looked at one another for awhile, all hoping someone would suggest the elevator. Finally, I cited my health and recent shortness of breath to avoid the stairs. Also, walking up six flights of steps is harder than it sounds. I did it once when an elevator was broken and deeply regretted my decision between floors four and five.

But now I can cite my pulmonary embolism as a reason for my shortness of breath. Although the doctor pointed out my hemoglobin is low, and that can also make you more tired easily. (That explains why I needed to go to bed after cleaning the apartment yesterday.) I suppose I should have noticed something amiss, but it’s hard to tell what isn’t normal anymore.

I also forgot to ask if there was anything I could do to avoid clots—other than to not have Hodgkin’s lymphoma or chemo. I seem particularly clotty, although I don’t think my arm, which is feeling a little better, showed any clots. It’s just irritated veins, I guess.

On Thursday, I’m going to have some ultrasounds of my legs done to see if they should consider filter that would filter out any more blood clots. (It’s one of those things that sounds made-up. Really? They can do that?) And I’m on Lovenox for another six months. I have those weird, hard bumps under my skin from the Neupogen injections, so I feel as if I’m running out of places to give myself shots.

As for the PET scan, it’s good-ish news. I’d rather have this stubborn cancer spot be gone already, but I’m also glad that it’s not going to hold up the next steps for radiation and stem cell transplant. The doctor showed me the pictures, and everything looks much better.

I’m meeting with the doctor about the next steps for radiation and transplant on Thursday, so I’m still on track! I won’t be in the hospital this weekend, but hopefully by the following weekend, I can start my stay. Not that I’m looking forward to it, but I’m looking forward to being on the other side of that stay.

On Cleaning

I just spent a few hours cleaning. Mostly this was filing papers and dusting. With my bum phlebitis-inflamed arm and my chest catheter, I can’t do things like dust under the bed, or move things around so I can vacuum and mop.

I’ve had several last-cleaning-before-the-hospital-stay situations—before both rounds of augmented ICE, for instance. But this feels particularly final, since I’ll be away for my stem cell transplant and radiation for a month and I won’t be allowed to clean for three months. Specifically, I won’t be allowed to vacuum or clean the bathroom.

There’s a chance my hospital stay will be delayed a week or two. (The worst case scenario would be longer, if the PET scan still shows cancerous activity.) So I may be able to clean next weekend. Yippee.

People have asked why I don’t hire a cleaning person. I’ve suggested getting a cleaning person during my convalescence, but my boyfriend shot down that idea. Truthfully, I’m relieved.

I’m not comfortable hiring someone to clean for me. That’s not to say I’m against having things done for me. My boyfriend does most of the cooking, because I don’t have time. And he would do the driving when we had a car. I liked pretending that I was a fancy NYC person with a driver.

I love having my laundry done. I might live here forever specifically for that reason. When I heard that you could just take your laundry to the laundromat and it would be returned to you neatly folded and clean, I nearly wept for joy. It’s like being in college and going home for the weekend and having your mom do your laundry, without the guilt.

The thought of doing my own laundry again leaves me deeply depressed. It’s not just the laundromat, which is an inconvenience. When I had my own washer and dryer in Ohio, I still wasn’t big on doing laundry. Or doing laundry correctly, I’m told. I just put all my clothes in together, without sorting. My laundry all has something in common—it’s dirty. So in it goes, and out it comes, clean, if maybe grayer or smaller.

I was taught to read labels when buying things to avoid buying dry-clean-only items and things with complicated instructions. Sometimes I forget. With dry-clean-only items, I often leave them in a pile and then wear them again a few times, my own version of dry-cleaning, before actually taking them in to be cleaned professionally.

If I have my way, I will never do my own laundry again. But I’d probably hire an assassin before I hired a cleaning person.

Growing up, somewhere along the way, it was instilled in me that having a cleaning person is for lazy people. Frivolous people. People who can’t clean up after themselves.

I know this isn’t true. Friends who are highly respectable, responsible people have cleaning people or cleaning services. So I don’t judge others, but I would judge myself harshly on this point.

I’m not sure where I got this idea. I don’t think it was ever overtly stated. But it was implied.

My grandmother did all her own cleaning. I’m not sure how she would feel about my laundry situation, but I know she hated ironing, so I feel as if she’d approve of my current choices. (Ironing depressed her. I think it made her dwell on disappointments. I feel the same way about cleaning the bathtub. I can’t clean the tub without feeling angry and depressed, so I get it. We all have a household chore that gives us too much time to think and inevitably and inexplicably stirs up all of life’s disappointments.)

I think when the subject of someone with a cleaning person was brought up, there wasn’t quite an eye-roll. But it was said with a hint of disapproval and a slight pursing of the lips.

So, with my last bit of strength, I will be dusting or mopping, reluctantly and with an air of martyrdom and grim determination. Though now that I physically can’t do some chores, I will channel my energy into bugging my boyfriend. He might change his mind about hiring a cleaning person after all.

 

Unofficial Visitors Policy

Some of you have asked about visiting, and as Greta Garbo was famously misquoted as saying, “I want to be alone.” I think.

That’s not to say I don’t want to communicate via Internet and phone. I had a few visitors during my most cognizant stay, when I felt the most well, and that was nice. But this isn’t going to be any fun. I wouldn’t be there if I didn’t have to.

The worst way to put this is that I’m going to get burned from the inside out the first five days, followed by seven days of being continuously poisoned intravenously. Then I’m going to be sick and sleeping — and, according to what I’ve heard, in a zombie-like state. Someone who’s been through a stem cell transplant said people came to see her, and she didn’t remember. The last week, I’ll be recovering, but I still expect to be in a haze.

I hate to be one of those people who inspires a Dear Abby letter. If you really want to come visit, you can. I think it’s nice that people want to, and I don’t want to hurt anyone’s feelings. But honestly, I’d rather see people when I don’t feel the worst I’ve ever felt. Everyone’s been so supportive and nice, so I do feel bad. But again, that same person who had been through this said that there came a point when she had to ask people to leave and she had to learn how not to feel bad about it.

If you happen to be around and want to drop by, that’s OK. But if you plan to come to New York specifically to see me in the hospital, please don’t. Unless you’ve always dreamed of coming to New York without the obligation of seeing me very much.

I just honestly believe I really won’t be up for visitors. Like I said, that could change. I won’t have a roommate this time, so I won’t feel pressured to win a popularity contest. (Because you know I’d feel a little rivalry.)

If you’re worried I’ll be bored, I don’t think I will be. I grew up as an only child on a cul-de-sac with no other kids. I’m used to entertaining myself. And I really do think I’ll be sleeping a lot, if augmented ICE was any indication of how I’ll feel.

It’s possible I might change my mind, at least for that chemo week, before I enter the zombie part or “hell week” as it’s sometimes called. (I’ve thrown up on most of the people I’ve gone to college with, so this might be your big chance to join that exclusive club.) You can check with my boyfriend for the latest!

Here are the rules for visitors.

Visitors have to have received flu shots for this season. My boyfriend is going to get his first flu shot ever. I can’t say anything to its efficacy. I’ve had flu shots and I’ve not had flu shots, and I’ve never gotten the flu. (Well, not ever. I had it once in second grade and I had the worst flu ever—nicknamed the Thanksgiving Disease by my group of friends who survived that terrible 1996 plague—in college.) That said, I’m really bummed that this whole procedure is going to obliterate my immune system. My old immune system was pretty great, and I rarely got sick. Except for the cancer. So I guess it’s back to square one.

Visitors must wear face masks, gloves and sometimes gowns. I hope most people wear formal gowns and tuxes when they come to see me anyway, but the hospital will provide gowns. (I don’t think they’re hospital gowns and I don’t think you have to get naked under them, but if you do, that’s your choice.) If you wear a face mask, I’d like you to pretend you’re in the band Clinic.

Visitors can’t have any germs. Well, they can’t be sick at least. No cooties!

No kids younger than 7. As much as I complain about missing my cats as a cat lady, this must be a very sad rule for parents of young children undergoing stem cell transplants.

No live animals or plants. The last time I was in the hospital, a bed bug-sniffing beagle came around as a precaution. I had a scheme to dress the cats as beagles, but I decided not to compromise their dignity by disguising them as dogs.

After the transplant, I want to see everyone, but that’s not going to happen right away, sadly. I’ll be back to square one with my immune system, so I have to stay away from crowded places for three months. I realize New York City is a pretty crowded place. But it’s advised to stay away from places like grocery stores at peak times, something I try to do anyway because I work at home and don’t need to rub elbows with the hoi-polloi. (I assume this also means the train, which is supposedly “filthy” and officially plagued by “schmutz.”) I have to avoid people with colds and viruses and such, especially for the first three months.

Post-transplant, I’ll also probably have trouble concentrating or remembering things. (I know some of your will say I had trouble with that before — insert comedy rimshot here.) It’s something referred to as “chemo brain,” a lingering mental fog.

So far, I’ve noticed this only a few times, after emerging from ICE. In one case, someone sent me an email about one thing and I kept responding to the subject we’d discussed in another email. It’s been hard concentrating during chemo, when the fatigue sets in, and afterwards, when I awake from my days of sleep. After that, it’s a bit like Lazarus rising from the dead or Sleeping Beauty awakening from her spell—or at least how I imagine it would be—it takes a little bit of time for me to remember everything that was going on before I went into chemo-induced hibernation. If I feel as if I’ve been asleep for a thousand years after a few days, I think a week or two will be harder to recover from.

In any case, please bear with my forgetfulness and general confusion—as you always have. I will remember an anecdote in detail from 1999, but I can’t remember my keys. And I get some very different things mixed up as it is. I sometimes get Gary Numan and Randy Newman mixed up. Oh, and Billy Bragg and Billy Squier. I also get Tinder and Grindr confused, so it’s a good thing I don’t online date. Mostly it is confusing to me. If you’ve talked about one of these subjects and I’ve looked puzzled, I’m just working this stuff out.

So in short, it sounds like, for at least three months, I’ll be easily tired and worn out, but I can slowly start to get back into the swing of things. And visit—or don’t. I’m just going to be exhausted, and I might smell like garlic.

Hopefully I’ll be almost back to my old self by my birthday in October!

Stem Cell Collection: 6 million

I now have more than 6 million stem cells ready for my transplant. It turns out my guess was pretty accurate on Monday—I had 3 million and change—and I had to go back Tuesday to have more stem cells collected.

So I had some grilled cheese and set off for Manhattan, but not without completely forgetting the Neupogen injections. I came home, took my shots and then rushed to the stem cell collection room. It was a full house, with all the beds taken, so I had to wait to get hooked up. Then my platelets were low, so I couldn’t get a heparin injection, which apparently moves things along. So this collection took a little more than five hours, and I was given heparin at the end.

I also got some yogurt to keep my calcium levels up, and the nurses shared some of their candy with me. It’s a pretty happy place, considering your blood is being drawn out, spun around and put back in for hours. The only painful part is waiting, and the nurses do their best to make that painless.

I plugged my laptop in and did some work, but I felt as if I was moving at a snail’s pace. A nurse explained that the Neopogen boosts white blood cell production, and the bone marrow is so focused on that that it lets other stuff slide — like platelets for clotting and red blood cells.

That explains why I’d been so sleepy. On Monday, I came home took a nap, and then went to bed early and slept for 10 hours. I woke up Tuesday refreshed but by hour three, I couldn’t work anymore and decided to read, and then I slept for at least an hour.

A social worker from the hospital also came by to see if I had any questions and to make sure I would have adequate care after the transplant. I was a little sleepy, so I feel as if I didn’t have any good questions. Also, my appointment list just had a name on Monday, and I didn’t check to see who I’d be seeing. So I’d gone to my dental appointment ready to discuss my feelings. (I know my regular dentist, so I guess I can discuss my concerns with her if I would like both a check-up and to talk about my well-being.) Most of my questions were answered by the online session last week with a transplant doctor and a volunteer who talked about going through an autologous stem cell transplant for Hodgkin’s lymphoma.

TMI alert: Whenever I blow my nose, my right nostril often produces blood. It’s happened after both ICE treatments and the doctors said since my platelets are low, I’m prone to bleeding. To add injury to this insult, while I was wiping up the dried blood from under my nose, it must have cut my skin, so I now have a very visible cut under my right nostril. It now beats my most stupid injury surpassing the time I chipped my tooth while drinking a fancy Bloody Mary. (Felled by an olive pit.)

I still have a giant, swollen monster arm. I’m worried that once my platelet counts go up, it might just burst open. I assume that’s never happened. In the meantime, I will continue to smell like menthol patches and not bend my arm.

phlebitis

Stem Cell Collection

I am in the second hour of my stem cell collection. Currently, a bag of my stem cells is filling up behind me. One lumen of my leukapheresis catheter is feeding blood to what appears to be some sort of Rube Goldberg machine, with a bunch of spinning dials, and the other is returning blood back to me.

They covered the lines for me with a blanket, because I’m a little squeamish. I accidentally took a look as the nurse drew a big vial of blood from my chest catheter and it really gave me the heebie-jeebies. Apparently, the blood is being taken out, spun around and then returned.

My stem cell bag is filling up, but I don’t know what 5 million stem cells look like. If I had to guess, like those jellybean contests at stores, I’d say I have about 3 million. We’ll see if I’m right. I have to come back every day until I reach 5 million. I’d like to be done soon, since I’m running out of places for the Neuopogen injections.

I’ve been here since a little after 8 am for a marathon of tests. They slated one after the other so I could get them out of the way before my stem cell collection at noon. Everything has gone smoothly so far, aside from my decision to take the train instead of taking a car. I thought I’d miss rush hour, but I forgot how crazy the 4, 5 and 6 trains are in the mornings.

I started with a pulmonary function test. I think this is my third or fourth one, so I’m an old pro. I wonder if my scores are worsening—not from potential lung damage, but because I haven’t been to Bikram yoga in a year, so I haven’t been doing any pranayama breathing. The test is a bit like that, without the head and arm motions. You blow into an apparatus as hard as you can and take a sharp inhale a few times, and there are a few other exercises where you completely empty and fill your lungs.

My finger also gets hooked up to a machine and I step up and down some stairs while it records my heart rate. Sometimes, I’m tempted to think of something that makes me angry to see if I can make my heart rate go up, but I never do.

Then I had an EKG. It’s the test, where they put those 3M poster-hanger things on you, followed by an echocardiogram. More breath-holding, this time with ultrasound goo and heart images.

After yesterday’s unsympathetic nurse, I finally got the reaction I wanted from the person who did my echocardiogram. “Phlebitis? Oh, I’m sorry,” she said. “That really hurts.”

Yes. Thank you. That’s all I wanted. Some sympathy and acknowledgement of pain.

My arm is even more swollen that yesterday. I have two giant, swollen bumps, one in the crook of my arm so I can’t bend it. My arm feels like it weighs 50 pounds. I usually use my other arm to move it around.

The good news is that the doctors had me pop by to take a look at it. The bad news is that they can’t do much. Since my platelets and counts are low, I can’t do blood thinners right now. (Alas! If I could celebrate St. Patrick’s Day, I could thin my blood on my own with some festive drinks!) In the meantime, I’m on antibiotics. Once my counts go up, they will consider the Lovenox again.

As for the painful bump on my belly, where we’ve been doing injections, it’s just a little bit of bleeding from the shots. It feels like a mini-phebitis. It hurts. Like a broken heart, it just needs time to heal. Sigh…

I also got a dressing change while I was there. It’s a piece of protective plastic around the chest catheter with a tape edge. The nurse has to write the date on it, and the nurse practitioner drew a shamrock on it, so I feel decidedly more festive.

The nurses at the stem cell collection room are decked out for St. Patrick’s Day. I think I have about 45 minutes left before I can go home. Since I usually spend my afternoons in bed with my laptop, not much is different aside from the big blood machine and the noticeable lack of cats.

I also had an appointment at the dental office here, so they can check to make sure I don’t have any tooth issues before my stem cell transplant and radiation. My teeth look good! I feel as if it’s the one area of me that’s not falling apart in some way.

On the way to the office, I got lost and spent some time wandering the back halls of this massive complex. When I found the elevators to leave, I realized I’d been steps from where I started, after a very long detour. I have no sense of direction, so this was not very much of a surprise.

In a few hours, I expect to get the call about my stem cell count. I hope it’s good news and that this big bag of stem cells hits the 5 million mark. I was worried I’d be a few short, but the nurse says if it’s close, it should be good enough.

We’re having pizza for dinner—just in case I need the calcium. I didn’t have lunch because I don’t want to have to get unhooked to use the restroom. I’m looking forward to sitting in front of the space heater with some food and cats.

I salute all those who have been going outside all winter. I’ve been outside a total of 10 or 15 minutes, and I can’t deal with one more second of winter. I’m ready to retreat to my hermitage until the weather improves.

Note: I feel conspicuous taking a photo here, so here is another photo of my cats.