Breathing Once Again

Taking in the majesty of the Pacific.

I realize I’ve been missing from the blog world for a while, but to write, I need time, energy and focus and I have not had an ounce of any of those for the past two weeks. But I've gotten those things back and the stories of what I've been up to will follow. 

Though I've been remiss of those things, what I did have was a bout with pneumonia, a pleural effusion that made it very hard to breathe, a week straight of very high temperatures, soaking night sweats, and teeth chattering chills, several bags of blood, and another round of chemotherapy thrown in. I spent an overnight at Columbia Presbyterian in the Bronx and then another five-night hospital stint at Hartford Hospital home in Connecticut after making an Emergency Room entrance. I also had some life-affirming experiences at the San Francisco Writer’s Conference and a fantastic time exploring the City by the Bay and the California Coast.

Yesterday was the first day I was home since I left for Cali on Feb 13. After a week of vacation, Craig and I separated and I took a red eye right to NYC to clinic where my mom met me and my medical team could examine me and infuse my next treatment immediately in case this was Hodgkin gone wild. Today was the first day that I’ve felt like I’m on the other side of all of these infections. It feels good. But it has not been an easy go. These weeks have taken a real tough toll. We didn’t know what was going on for a while there, and that is a scary feeling. After much examination, imaging, blood tests, heart tests, monitoring and IV antibiotics all over the place, it was ultimately determined that I had a community acquired pneumonia in my left lung (damn sick people on planes) and developed a lot of fluid in the lining around that same lung which grew as an inflammatory and protective measure.

After just a couple of days on the IV antibiotics, the high fevers and chills stopped. This was assuring (I know, odd) because to me it meant okay, I have an infection, it’s not the lymphoma flaring up like crazy. Of course, we don’t know that that’s not happening simultaneously, but if it was the cancer causing all of this then we’d have some big problems. Cancer doesn’t respond to antibiotics so we had to refocus and find the other cause.

My bloodcounts were very low, likely a response to the current clinical trial drugs I am on. I was at the point in my cycle that low counts would be expected. So on top of all the fatigue from travel and infection, I was also very anemic from therapy itself. I received one bag of red blood cells at Columbia and then another two at Hartford. My platelets had also dipped way down and I had to get a bag of those blood clotting buddies. Thanks, as always, donors. You keep me pumping, literally.

But the coughing and the shortness of breath weren’t getting any better. I needed oxygen tubes up my nose to be able to take anything beyond a shallow breath or else I’d go into very scary spasms where I just couldn’t get my breath. After seeing my oncologist, Dr. D, ER docs, the infectious disease team, pulmonary and medicine teams, all agreed when looking at my chest x-ray that I had a whole lot of fluid in there in addition to the pneumonia, which was responding to the antibiotics. It was decided to pull the fluid out to alleviate my lung, which was all scrunched up and to eliminate the possibility of the fluid becoming infected.

I was told that the “pleural tap” would be a simple process. It was simple, but was hellish nonetheless. I was taken into a little room where the interventional radiologist looked at the fluid collection with ultrasound imaging, identified a spot to go in at and put in a needle and a tube and a vacuum to pull the fluid out. I was fully awake and sitting up, resting my arms and head on a tray with a towel on it.  The Novocain going in felt exactly like the doctor described: a ton of bee stings at once. Most of the process didn’t hurt, but it was one of the creepiest feelings I’ve ever felt knowing that fluid was pouring out of a hole in my back as I sat there with my open hospital gown dangling around me.

When it got toward the end of the drain, shooting pain set in, which I loudly alerted them to. They checked the ultrasound and assured me that it was almost at the end, then yanked the tube out. I was one of the lucky few who had a wild reaction to my lung being suddenly freed. The doctors had warned me that that process could cause some irritation as my lung bounced back down into place and rubbed back up against my chest walls. Oh, did it ever. I had a loud, slobbery, hiccupy, gagging, choking session that lasted a solid 15 minutes. The surgical team awkwardly stood around me knowing there was nothing they could do. My body just had to settle itself. They handed me tissues and told me to cough it out as my eyes bulged and teared and snot ran down my face. My body sweat and wrenched with attempts to re-learn how to take in air. It sucked. I was so afraid I was going to explode my new whale blowhole in my back I was coughing so violently.

I just kept telling myself: ‘It will stop. It must stop.’ And it did. An immediate post-surgical chest x-ray showed that my lung had not collapsed, which was a real concern, and that the 750cc of fluid they pulled out was in fact all of it. I caught a glimpse of the big glass bottle full of thick phlegm-yellow liquid from my insides and understood why walking those San Francisco hills was especially hard for me. I was carrying along quite a load. I was so happy to roll back from my stretcher into my hospital room that had become a sanctuary.

As truly wonderful as the nurses were and how nice the large, private room was, no matter what, being in a hospital is not restful. I already had not slept for the week prior as I was waking up every night in our San Fran hotel room with terrible night sweats and shaking chills. I was beyond sleep deprived. Thankfully, I was taken off of fluids after the first three days so I didn’t have to remain attached to an IV pole, except for times when I was receiving meds. However, I still had to smell my pungent antibiotic-laden urine in the hat I had to pee in, eat trays of sodium laden micro-waved specialties, and sleep surrounded by railings with someone wanting my blood pressure every four hours. After the fifth night the air got real stale, the walls began to close in, and my patience tank ran out.

Dr. D wanted to keep me for one more day of monitoring after the procedure, but when I told him that I desperately needed rest and was on the verge of losing it, he agreed that if I remained afebrile, we’d switch me to oral antibiotics and I’d be able to go home with pills and an inhaler. So here I’ve been since Wednesday night doing a whole lot of sleeping, eating real food again, learning to breathe again and gathering strength. To add insult to injury, I brought home a cold virus from the hospital with me so I spent the past couple of days sneezing and nose running like crazy. I haven’t been a real happy person. But every piece has been better every day. Today I went to get bloodwork at the clinic and everything has risen back into place. Next Wednesday, per the study protocol, I will get a PET Scan and go over the results with Dr. O and see how this treatment is working.

I simplify things now because I’m just so happy to feel better, but I was very low on all fronts for many days. Being back in a hospital is especially difficult. But I realized that I am very fortunate. This is the first time I’ve been hospitalized for a legitimate community acquired infection, which is shocking for someone living with a cancer of the immune system further compromised by three stem cell transplants and active chemotherapy. I’ve done all right so far.

Just some of the things that got me through the really scary fevers, sweats, fears, and frustrations were these very special moments: Craig bringing in take out dinners for me to eat in our hotel room in bed with me despite being in one of the nation’s greatest culinary cities so that I could avoid chills and retire at 7pm. My mom sponging me down with cold washcloths in a hip New York City hotel room, despite my protests, saving me from a 104.6 fever. A visit to my hospital room from my brother and sister-in-law and niece and nephew who turned the room’s curtain separator into a stage curtain announcing “Tah! Dah!” with each pass-through. Sweet friends and neighbors that stepped up to take care of Sam Dog so Craig could spend time with me in the hospital. A visit from my best friend with Starbucks favorites and lots of good chat time. Being cared for by nurses that have come to be friends over the years. Surprise visits from so many former co-workers at the hospital. Re-runs of Full Houseand Friends, Kourtney & Kim Take Miami, Ellenand the Today show – anything that could help me escape the reality of how trapped and scared I felt.

Today I am grateful to be able to laugh without breaking into a coughing fit and to have had the strength to go grocery shopping and to the movies with my mom when just yesterday I had to prop myself up by my elbows as I did a load of laundry. I am being very gentle with myself and am again so humbled by the body’s ability to heal with the right medical attention and the rest, nutrition and love it needs. I tell it I love it every day and thank it for continuing to allow me to live in it. Pneumonia’s got nothing on us.

Breathing eas(ier) once again.

Three Years Later

How appropriate that today is the third anniversary of my cancer diagnosis: May 8, 2009, and I’ve spent it in the Emergency Room and now as an inpatient at Hartford Hospital – the hospital at which that diagnosis was discovered. This is certainly not where I thought I would be three years later. It’s frustrating. It’s defeating. It’s confusing. It’s angering. It’s exhausting. I’m doing my best to focus on the fact that I am still here, that I am still living my life despite what this persistent disease has tried (and failed) to take from me, but it’s hard to keep that focus. This year, more than past anniversaries I admit that I’m angry and resentful. The fact that I’m in the hospital on this day is just insult to injury.

Just last night I said to Craig that I am never going back to stay in a hospital and that he’d have to drug me up significantly to get me there and my mom was comforting me by saying that even though I was feeling so awful, at least I was able to heal in my own home. Well, to all of our surprise, here I am, and I won’t be released until they figure out what’s going on with me. It’s funny how a fever of 103 degrees, writhing chills and a morning full of vomiting quickly changed my tune on the Emergency Department visit. I nearly collapsed at its doors desperate for help to make me feel better. I also came uncomfortably close to vomiting on the triage nurse.

The past few days have been very difficult. I greatly enjoyed a wedding on Friday night and a bridal shower on Sunday, but in order to do that all times other than that have been primarily spent sleeping or wanting to sleep with just short spurts of energy. I’ve had incredible body aches, swollen and achy joints, foggy headedness and incredible fatigue. Yesterday was the seventh and last day of my second round of CEPP oral chemo. It was rough. I don’t think it’s for me. Plus, I didn’t even have the Procarbazine as several errors on the part of the mail-order pharmacy delayed its delivery to yesterday, missing an entire week of treatment with that third drug of the protocol.

Yesterday was a particularly hard day. I was very weak and my body very swollen. I was also extremely emotional about approaching my three-years-with-cancer mark. It is just plain hard to look back at all that I’ve been through and the anniversary just reinforces how much I am still in the fight. All day yesterday I kept saying that I had a bad feeling about May 8, that it was going to be a difficult day. The emotions are elevated by the fact that today would have been Craig’s mom’s 60^th birthday. This is hard on both of us. I felt so awful last night that I asked Craig to pick me up McDonald’s on his way home. This only happens when I feel completely disgusting and know that soda, fries and fake meat is the only thing that can absorb the unsteadiness in my belly.

After vomiting and registering a temp of 103 degrees at 5am this morning I knew I had to call the on-call doctor at Sloan-Kettering – technically I’m supposed to call at 100.3 degrees, but I thought that the 100.8 of the night before was okay to get away with. However, the morning presented some more serious issues to contend with. Not surprisingly, the doc told me to head into my local Emergency Room to be evaluated for an infection. I also spoke with my local oncologist, Dr. Dailey, who advised me to do the same and called ahead for me to get the fast track in the ED. He’s now leading my care here.

Craig took the day off from school to drive me in and be with me today. My mom came by and surprised me this evening to hang out with us. Since our 7 a.m. arrival, I’ve been cultured at every orifice: blood work from my port, blood cultures from my arm, chest x-ray, urine sample, nasal swabs – the gamut. I’ve been seen by the hematology team, internal medicine team, ED team, and infectious disease groupies. I’m just on the border of being neutropenic so this doesn’t seem as if it’s neutropenic fevers due to lack of white blood cells. This doesn’t feel like normal chemo side effects. The high fever means that there is something wrong in my body and because I am immuno-compromised the doctors need to treat it aggressively.

I’m being treated with IV broad-spectrum antibiotics to hopefully kick whatever this is. I’m also being pushed IV fluids as my blood pressure is very low. The team here will be monitoring me closely for signs of more fevers as we await the results of the blood cultures to see if there are any signs of bacterial infection. So far, all other tests have been clear. I will likely be here for a few more days and can leave once the cultures come back and I have 24 hours sans fever (so far I’ve stayed cool since the start of the antibiotics). Good news is that I don’t have to take the Procarbazine anymore. To be honest, I was probably going to refuse it anyway as I knew my body needed a break.

I am already feeling much, much better than when I arrived this morning. I’m just very tired and hope that I’m able to sleep, though I already know they’ll be waking me up every four hours for vitals checks, so a broken sleep it will be.

I don’t want to be here, but it’s where I need to be. I feel safe here. The care has been fantastic and I’ve seen many familiar faces from past inpatient stays over two years ago. It’s like a homecoming with some of the nurses and PCAs and that certainly makes things more comfortable. Plus, I’m on the newly renovated cancer floor, which is absolutely beautiful with rich décor, a big television upgrade, much comfier seating, and a private bathroom with shower. 

The Emergency Department has also been completely revamped since I was there last and it looks fantastic. The comfortable, private, clean, upgraded space makes a big difference when you’re feeling real bad. It looks more like a crisply decorated home than a hospital. I have a huge window that overlooks the action of the ambulance drop off and the forecast is predicting rain for the next few days anyway, so it’s appropriate weather for indoor rest and healing. This is where I need to be. Maybe it’s been some fluky infection that’s been holding me back and once these power antibiotics kick in I’ll get back to myself again. I miss my energy.