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.

Phlebitis?

Yesterday, I went out into the world—to dinner and to a tiki bar, where I could not, alas, have any delicious tiki drinks. But it was nice to be out in civilization for a bit. I laughed so much, my cheeks ached.

Today, my bones ache instead. I am angry and cranky. I have two raised, red bumps that look like blood clots.

Oh, I’m sorry: phlebitis. I have been corrected.

I called the doctor on call about the bumps to see if they wanted to schedule an ultrasound to confirm. He doesn’t think they’re clots and told me that he’d pass along the information to my regular doctor tomorrow.

I had to go in today to have my blood checked. The doctors don’t want my platelets to drop below 20, but today they were down from Friday’s 35 to 8, so I got a yellow bag full of platelets.

I wasn’t going to bring up my superficial clots to the nurse, but my boyfriend said I should. I asked her if the platelets would affect my clots. I wish I hadn’t. She asked me why I thought they were clots, and I said because they were exactly like the clots I had in my other arm. She asked me if I’d had an ultrasound. No. She shook her head at me. I showed my new painful, red, raised bumps to her, and my old clotted arm that still feels like I have straws embedded in my arm but is no longer swollen.

“That was phlebitis?” she asked.

Yes. I guess. All I know is that it made me miserable for weeks. I couldn’t move my arm. Sometimes, it felt like a tiny fire was inside. It hurt. A lot. Almost the time.

“It’s not the same thing as a clot,” she said.

That’s fine. Phebitis. I was being nice, despite my pain, and she went out of her way to try to make me feel stupid. I’m not sure what she perceived about my attitude. I has asked a simple question.

Still, my usual response would be to tell someone to phlebite me, but I don’t like to mess with people who have access to my bloodstream, even if they’re being condescending. That didn’t improve my mood. I feel like no one’s taking me seriously and that I’m being dismissed.

I’m not saying I know everything…or anything, for that matter. I’m saying that whatever happened to in my right arm that caused it to hurt and swell for weeks is happening in my other arm on my belly and I would prefer that it not.

I’d hoped my new platelets would make me happier, but I’m still a big jerk today. My boyfriend is out exchanging some Henley shirts for me, so I can wear them tomorrow for my stem cell collection. (Another alarming thing: one of my catheter lumens isn’t working. The nurse just said they “would do what they had to do” tomorrow and didn’t say any more.)

I am trying to get nicer in the meantime. I am wearing some pain patches. I’ve rubbed the cat’s soft belly. I might nap.

I am not taking my oxycodone. I would sell it for extra cash if I had no scruples, but I’ve recently seen a lot of news pieces on the heroin epidemic, so I’m not going to turn into a small-time Walter White. I’m also terrified to take it now, on top of my usual wariness of pain meds.

My big comfort today is the cheesefest that’s going to occur, since I have to eat a lot of dairy before my stem cell collection. For lunch, I had saag paneer, with cheese and spinach, both high calcium. For dinner, we’re having an assortment of cheeses. Cheese, at least, makes me happy.

Today’s just one of those bad days, when I want this to be over. Naptime, then hopefully I awake a new woman.

My Aching Bones

My bones hurt. Finally.

We’ve been doing two Neuopogen injections daily since Sunday. I brought my old syringes to the doctor yesterday, so they could safely be discarded,  and then I almost left them in the cab. (I’m usually not a fancy person who takes cars to the doctor, but my appointment would have put me on the train at rush hour with germy people who would all be out to knock my catheter out of my chest.) So that’s one way containers of syringes get left in cabs, I suppose.

I was told that my bones might hurt as they produce more stem cells, so I hope this is a good sign. I have pain medication, but the pain isn’t that bad, and I hate taking stuff.

I’m really looking forward to eating a lot of dairy. I see a lot of cheese in my future.

My doctor visit yesterday was pretty uneventful. I got the dressing changed on my catheter and had some bloodwork done. My red blood cell count is pretty good, because of the transfusion I had before I left the hospital. My white blood cells are low, as expected.

My platelets are also low, at 35, so I have to go in tomorrow for another blood check to make sure they don’t drop below 20. I’m at risk for bruising and bleeding more easily. So, no brawling. The catheter had ruled that out anyway. Sigh…

Until then, I’m allowed to go out and be in the world a little. I’m going to go to dinner tonight and go out on Monday with some friends for a big, cheesy dinner. If all goes well, I’ll be in the hospital soon, so I’m lobbying for a pizza party at home so I can see people before the hospital stay and my hermitage begins.

Second Round of Augmented ICE Delayed

I was supposed to be in the hospital right now, receiving my second round of augmented ICE. Instead, I am lounging in bed and catching up on work—and, of course, this blog. I have mixed feelings about this—obviously, I’d rather not be in the hospital, but it’s just a three-day respite from the inevitable. Instead, I’m going in tomorrow, just in time for the snowstorm. (One of the many snowstorms of this winter.)

I have mixed feelings about the weather too—on one hand, it makes going to the hospital and doctors’ appointments, of which there will be many, less pleasant, but on the other hand, I have to be a hermit through May, and hermitlike through mid July, when the weather is beautiful. (I expect the winter to be done by then, at least.) This is when I wished I’d skipped the Brentuximab and gotten all this unpleasantness over with in the winter. Ah, well.

Friday, I packed up my hospital suitcase full of loungewear and my blanket and headed to my doctor’s appointment before the scheduled leukapheresis catheter placement. When the doctors saw the arm with the two clots, however, they decided to delay catheter placement and my hospital stay. My arm at that point looked better than it did on Thursday, when it swelled to giant proportions. I was worried it would burst open like a piñata filled with blood, but I realized this is probably not possible.

After a night of a heating pad and menthol pain patches, my arm was still red and hot to the touch. And it hurts. Sometimes, it feels like a tiny flame is in my arm. I rated the pain a five or six, but my boyfriend told the doctor it’s an eight. He corrects me a lot at the doctor, and I always wonder if they write down what I’ve said or his opinions. I think I have to agree with him in order for them to take his into account. An eight is pretty serious though. I maintain this is a six.

In case my arm is infected, I’m on antibiotics, and I went for another ultrasound. Apparently, the clots are the same size. They’re just inexplicably more painful and annoying. So I got some more Lovenox to inject daily to try to clear them up.

I start chemo on Monday and then I have my catheter placement on Tuesday. In the meantime, they might use a PICC line for the chemo, since my veins have been less than cooperative.

On Friday,  I did meet with the transplant doctor, who gave me an idea of what’s in store in the coming months. Spoiler alert: Not much in the way of fun.

The saddest news came when she asked me if I have pets. When she found out, I have two cats, she had a list of don’ts. I can’t change the litter, but that’s my boyfriend’s job anyway. Also, she said I have to keep them away from my face until mid-July. What? How am I supposed to resist burying my face in their fuzzy bellies?

Also, one of the cats is extremely proactive about touching our faces. Just the other night, she was curled up by my boyfriend’s face, rubbing her wet nose against his cheek while he tried to sleep. I wake up with her paw on my shoulder or her face buried in my neck, or sometimes I wake up because she’s pressing her nose against mine.

The doctor is very knowledgeable about stem cell transplants and medicine, for which I am grateful, but I suspect she knows very little about cats when she suggested we break the cat of her habits. There’s no teaching a cat anything. It’s going to be a long, sad three months.

I didn’t cry when I pulled my hair out or applied duct tape to my head. I didn’t cry when I heard about my upcoming “hell week.” But I did cry about this. Sometimes, I’ll just look at the cats and tear up. It’s not even like I won’t be able to pet them. I guess it’s just a symbol of how things are going to change in the coming months. Also, I love kitty-cats.

I have to make sure all their shots are up-to-date, so luckily we just took them to the vet. They are senior cats, but in far better shape than I am right now. In fact, the female cat is in the shape of a cat one-third her age. I wish she could understand the vet, because she is vain and would enjoy this news.

Aside from the cats, I’ll have to avoid alcohol, something I had assumed was a given. Once your fast-growing cells are poisoned and you have to take anti-nausea drugs, drinking isn’t something you feel like doing. Also, after the last ICE, the nurse advised drinking at least two liters of water a day so the drugs don’t irritate the bladder and cause bleeding. So I stayed extremely hydrated, although I’d have a little coffee with milk during the second week. Of course, I’d love to hit happy hour instead of giving myself blood thinner injections. I think I could do an excellent job of thinning my blood on my own. Alas.

I’m also supposed to walk to help with recovery. Vigorous exercise is out—I haven’t done my workout DVDs since the first round of ICE and I managed to do yoga only four times since, after being thwarted by my fever, hospital stay and the arm I can’t move because of the clots. The thing is, I don’t want to walk outside when it’s cold, and there’s no sign of spring in sight. I’ve thought of getting an elliptical, but I have a small Brooklyn apartment. I do have a Leslie Sansone walking DVD that I got when I worked at a women’s magazine and edited the fitness section of the blog. The magazine shut down before I had a chance to watch it, and I’m intrigued. It could be a nice indoor walking solution that doesn’t take up much space.

I can do gentle yoga, but I’ll have that chest catheter so I’m wary of stretching. The doctor advises stretching a little bit once it’s in, but in addition to the heebie-jeebies, I can’t move my right arm much because the clots hurt.

At some point, I’m also going to get a blood transfusion.

I got a thick binder full of information from the doctor all about the transplant with fun topics like hair loss, catheter care and giving Neupogen injections twice a day. I haven’t even scratched the surface. For those asking what’s in store and my schedule, here’s an idea:

March 3–5: Second round of augmented ICE, catheter placement. I am not looking forward to having tubes sticking out of my chest. This gives me the heebie-jeebies. There will be two for the stem cell collection—one to take my blood out and the other to put it back in once the stem cells are removed and my blood spins around in a machine.

March 7–16: Neopogen injections, a catheter dressing change. We’ll do the former, but I’m glad we don’t have to do the latter. The shots to increase stem cells might cause bone pain, I’m told. They’re going to give me pain medication, but I hate taking pain medication. I don’t even like to take aspirin. I do hate pain, though, so we’ll see.

March 17–19: Stem cell collection. This involves sitting around for four hours, while your blood is taken out and put back in. It doesn’t sound so bad. During these days, I also have a flurry of tests and appointments, including an echocardiogram and a pulmonary function test, as well as an appointment with a social worker to mentally prepare me for the transplant. The best part of this process is that I have to eat a high-dairy diet these days. Bring on the milkshakes and cheese. (Greens also have a lot of calcium, so I’ll be sure to eat those as well.)

Stem cell collection might take longer than three days. They need 5 million. The record to beat is 32 million, but the doctor said that person had a lot of bone pain, so I’m OK if it takes longer. I’d like it to take only two to three days, if possible. I hope my bone marrow cooperates.

March 24: PET scan. I need a clear one to go on to the transplant, so I hope I pass! It would be nice to finally get a clear PET scan, something I’ve been hoping for since October. And I think I start outpatient radiation this week.

April: If everything goes well, five days of inpatient radiation and three weeks in the hospital for the transplant. The radiation is supposed to have unpleasant side effects, so I’m just in the hospital so they can keep an eye on me. Then the first week, when they do the chemo, is supposed to be OK. They keep referring to the second week as the bad one. Someone called it “hell week.” I’m scheduled to speak with a volunteer who has been through this to answer any questions. Also, someone left a comment on my last blog about a friend of hers who did a stem cell transplant for refractory Hodgkin’s lymphoma and is doing well. It’s always nice to hear tales from the other side.

In the third week, I start a long recovery—about three months of rest and isolation from crowds and six months until I’m 100 percent. I’m a little disappointed to hear that the first month of recovery is so intense and that I’ll need 24-hour supervision. Of course, I didn’t expect to emerge from the hospital feeling great. But I’ll have the immune system of a newborn.

So that’s what’s in store! The next steps start tomorrow, and as much as I’m wary of what’s in store for the next few months, I’m also eager to move towards the end.