Pushing Through Like I Said I Would

A throwback photo.

Sometimes I am embarrassed by how I reacted to my initial diagnosis, shocked at how immature and naive I was – invincible! cancer! fighter! At other times, I’m so jealous of who that 26-year-old was. I feel that about other aspects of my life, too, not just dealing with my disease. As time passes and as I age, more difficult things happen, which can leave me guarded, jaded and tired at times.

I feel like things used to be so much simpler, though they probably weren’t, they were just different. But what I can guarantee is that I did not know as much and now that helps or hurts me depending on the situation.

I’ve never been one to say: “ignorance is bliss.” I’m curious, an information gatherer and problem solver almost to a fault. I want to figure everything out and know about not just everything that is happening in my world, but in the greater world around me. I think that’s why I love books and good news coverage and documentaries so much, because these are things that are really happening even if we as people pretend they aren’t.

But right now, in this moment, I know too much. I know that the tremendous pain I’ve been in over the past four days means lymphoma is growing. It is very intense and very concentrated right in my hips and pelvis and sacrum, exactly where it always flares up. It’s at times like this when maybe ignorance would be bliss, and I could just pretend that it’s a fluke – too much squatting when planting our little herb garden.

My doctors and I don’t even need to directly speak it: they know I know and I know they know what’s going on. No one has said: “It’s cancer in your bones that is causing you this pain” just like no one says the ground is wet because it is raining. Why state the obvious, especially when we’re all getting a little tired of acknowledging it?

I’ve been prescribed a new cocktail of pain meds that got me out of the blinding, seething pain that was Sunday and Monday and into the uncomfortable, woozy, nauseating – though pain-free – high that has been last night and today. Tomorrow we will stick with the plan of a higher dose of Gemzar and the addition of the chemotherapy drug, Navelbine. We’ve got to stop the growth as the pain is intolerable.

When I was first diagnosed, I went at this so simplistically. It was a challenge that I would conquer. I knew it wouldn’t be easy, but I never thought it would be impossible. Now, I’m looking back at 26-year-old Karin for some of that old positivity and confidence.

In my post from May 8, 2009, entitled “Diagnosis,” I wrote:

"So it's confirmed. I have been diagnosed with Hodgkin's Lymphoma, a cancer of the immune system.  

I know I'll always remember where I was when the twin towers were hit. In my dorm room at UNH in between classes as our floor mates all started piling into our room to watch the news coverage huddled together. 

 Now I'll always remember where I was when I got this news: with three cocker spaniels, a hot dog dog, a giant poodle, a black and a chocolate lab, two great danes, a furry, white mutt and Sammy at the Granby dog park. With a slobbery baseball in my hand and Sammy wagging her tail at my feet for me to throw it, I got the call from the oncologist. An odd place to receive a life-changing phone call, but the whole thing has been so surreal that it was almost fitting.  I'm feeling better having a diagnosis and am ready to take on this challenge. I'm looking forward to getting better no matter what it takes. My oncologist is "very optimistic" and assures me that the chemotherapy is very effective and that I'm young and strong and will do fine.  A couple more tests scheduled next week then Wednesday is the big "plan of attack" talk with the doc, me and Craig and the first chemo treatment by the end of the week. Feeling overwhelmed by the outpouring of support from so many people, relieved to know what's going on in my body and that there's a treatment, and anxious to zap these cancer cells out of my system.  I will beat this. It's just a matter of pushing through the tough times."

That last statement was at the time so simple and is now so profound to me. I had absolutely no idea what I was in for. My wildest imagination couldn’t have fathomed what “tough times” would mean. But whatever was to come at me, I knew that I just had to push through it, like how we all have to put our pants on one leg at a time. Simple as that.

I guess none of us ever know what we’re in for and because of that, there’s not much we can do but promise ourselves that we’ll work through the tough times because those are part of this good life, too. 

Gemzar Cycle 2ish

I am two infusions into my second cycle of Gemcitabine. Today was supposed to be the last in the cycle, but it didn’t happen. Then again, there’s really no “supposed to” in my situation. I am far outside of any book regimens at this point. My doctors and I are just reacting and attacking, using my pain syndromes and my blood count levels as indicators of when we’re not using enough or hitting me with too much of the chemo drug.

We scaled down my dosage in the first cycle as my blood-clotting platelets were dipping dangerously low, disallowing me from getting the treatment as frequently as my doctors would want. Now, in this second cycle, my counts have been holding pretty well but I’ve had some bouts of wild pain set in, which makes them think that we need to whack a little harder. A little harder as in dialing up the amount of Gemcitabine I am receiving and also possibly adding in another drug: Navelbine to make sure that we are staying ahead of the lymphoma.

To my maybe not-so-secret delight, that change did not happen today. My platelet level was down to 50,000. It would be way too dangerous to treat me at that level knowing I’d drop even further and would very likely need a transfusion and be at risk for random acts of bleeding and all of that fun stuff. I get a bi-week. This works out wonderfully as I am hopping a train this weekend bound for Washington DC for some time with my college roomie. I couldn’t be happier that I’ll have no chemo symptoms to contend with (including the super swollen face look that I so adore.)

What I am having to contend with, however, is this on and off pain. It sneaks in like a jungle cat, all stealth-like, then wham – attack out of nowhere. It feels similar to having what I’d imagine the claws of a jaguar might feel like if they were scraping around in my sacral and hipbones. The nails dig in and then twist pulling all the muscles and tendons in around the pain that then emanates from that hot epicenter.

Heat helps. Pain patches help. Stretching helps. An increase in my steroid helps – though it’s incredibly frustrating to have to keep popping back up to higher doses of Prednisone (20mg currently) when I know all the side effects they come with. Even with these Band-Aids, sometimes the pain still breaks through and that’s when things really suck. A Dilaudid pill and sleep are really all that will help those times. I am grateful that it is not by any means constant and that I do have options with treating the pain syndrome.

There is no real certain way to know what is even causing the pain. My body could just be old and angry and arthritic, not at all unheard of for all the steroid breakdown my bones have probably endured, the battles going on within the bones, and how much work we’ve been asking my bone marrow to do for four years. It’s not necessarily that the cancer is growing, which is another reason why I wasn’t too keen on hitting it with more chemo today. I’d like to just ride this out a bit and see what happens over the next week. Maybe I just injured my lower back like any regular person. I mean, I was throwing kayaks around … . I kid. I was in on and off pain before that. The big reason I went kayaking was because I finally was having a pain-free day. 

What’s important is that it didn’t stop me from enjoying a weekend away with Craig, Sam Dog and longtime friends at one of their Vermont lake houses. Okay, maybe we had to delay it by a night as I waited for my pain meds to settle out, but that's what flexibility means. We made it, and it was complete with a fire pit and boat, dinghy and ATV rides, blended drinks, meat on the grill, and lots of laughs, reminiscing and catching up. Everything Memorial Day weekend should be. 

[Vermont] 

Reflecting on Four Years

When my mom takes notes at doctor’s appointments she likes to star and quote the good stuff. She loves when doctors give me positive comments and wants to be sure I remember them. Often, I don’t even hear them because I’m so focused on the treatment and brush off the compliments on my progress.

Case and point was last Wednesday’s check-in with Dr. O and team who have been overseeing my care from afar while I receive the infusions locally with Dr. D. In my notebook ­ – the third one we’ve filled with appointment notes since diagnosis – there are a few quotes by Dr. O that my mom felt important enough to record:

“Mucho Fantastico!” (after hearing how my lymphoma pain and b-symptoms have diminished)

“You look great!”

“You are closer to normal than you think.”

The last quote did resonate with me. He said it after I started peppering him with questions about what my restrictions are and getting answers back that seemed like I had total freedom as long as I just listen to my body. I am not used to this after so many years of feeling like I’m shackled.

He got where I was coming from when asking about Zumba and yoga and just simply said: “It seems like many of these questions are related to whether you’re normal or not and you are closer to normal than you think.”

This was a dream phrase for me to hear, but still hard to process. Last Wednesday, May 8, marked four years since my diagnosis date. As I was in NYC for my appointment and distracted by everything that entails, it completely slipped my mind until I got home after a long day and Craig greeted me with: “Happy Cancerversary.”

Woah, gut check. Four years. I can either say:

“I’ve been going through this awful shit nonstop for four, long years.”

Or, I can say: 

“I’ve been keeping ahead of cancer for four years and thoroughly enjoying my time despite disease and its baggage.”

Both are true, but this year I lean much toward the latter. It’s been four years and I’m still alive – that’s kind of huge. I rarely get angry about my situation anymore. I’ve come a long way toward integrating it into my life and not letting it take over my life. I’ve learned over these four years that it’s all about balance. Balance the bad with good. Balance the down days with excitement. I slip up – often – and lose my focus, but I’m proud of the coping mechanisms I have found to bounce back.

I don’t know if I quite think of myself as “normal,” especially since I’m still getting weekly chemo injections, but am ecstatic that my oncologist even entertains that concept. I am comfortable with thinking of myself as “more normal than not” and that opens up a whole lot of doors for me, which brings a lot of uneasiness and a lot of pressure, too.

I am trying to find my place in the great, big, wonderful world. Sometimes it’s difficult when I am feeling better because I want to go out and do everything: pick up work, learn an instrument, get into pique physical shape, conform back to my old life or everyone else’s life, then I end up in the ER with shortness of breath and heart palpitations and I realize that I’m not like everyone else. 

Am I sick or am I not sick? Can I move forward or not? There’s no clear answer and I work very hard not to get caught up in analyzing it. Some things are just unknown. My fate – anyone’s fate – is one of them. I just happen to have mine staring me very close in the face all of the time, so I think about it more than most. 

Whatever will happen tomorrow, or next month, or four years from now, today I feel well and for that I am grateful.

At the beginning of 2013 I set my intentions and vowed to frame my year around the John Borroughs quote: “Leap and the net will appear.” Looking back on four years, I’d say that’s appropriate for where I’m at.

I’m making leaps. Big leaps. Small leaps. Planned and unplanned leaps. So far, a net has always appeared and with each successful landing my confidence has made its own leap upward – little by little. Jumping isn’t so scary anymore.

Can't Seem to Stay Away: Another Hospital Stint

For three nights I’d wake up from a dead sleep gasping for air. I’d sit up straight in attempts to get the blood moving then would be acutely aware of my heart and its beats. My heart was trying too hard. It felt tired and labored as if it were working overtime. As I’d sit there and try to regulate both my heart and my breathing sometimes I’d feel a blip in the rhythm, a missed beat in the heart’s drum line. It took a long time to fall back asleep after each episode, terrified that I wouldn’t wake back up.

I  received my third dose of Gemzar chemo last Wednesday. My platelets were again low and my anemia bordering on transfusion-required levels, but we went ahead with the reduced dose, again with the thought that the cancer is the greatest threat and consistency in attacks against it is the best strategy. All went smoothly except for a high heart rate (140bpm), consistent with the high heart rates I’d been registering at the clinic for the past week. I told Dr. D about the nighttime heart episodes and he sent me off for an EKG. On it my heart rate registered at 90bpm and all looked normal – of course. I felt well enough for tapas Mexican with my mom and a grocery shopping spree to replace the hundreds of dollars worth of food we lost when our fridge and freezer went kaput last week – sigh.

The chemoey feeling crept in that evening: cellophane-wrapped muscles, creaks everywhere, bleary eyes and a nauseating fatigue. I went to bed early. Again I awoke with a start, gasping for air, but this time, instead of my heart going crazy it was my left arm. It was flailing and jerking about of its own accord. I elbowed Craig hard to witness it as I cried and groaned not knowing what to do.

In reality, the waving and flailing lasted about 15 seconds, but it felt like 15 hours. When it stopped I couldn’t even touch my arm, the muscles were so sensitive and dead tired from the dance it just did. I thought maybe I was half in dreamland still, but then it happened again, and again, and again – each occurrence just when I fell back into a dead sleep. I thought I was having seizures, so I took an extra Neurontin. I take it for nerve pain, but I remembered Dr. D saying it is also a seizure medicine. I figured I’d give it a shot and was thankful that it carried me through the night with no more episodes.

My worries about this were compounded by the fact that I’d been having tremors in my right arm for about a month that I only very recently alerted my doctors to. My original plan of action was to brush that under the rug, as I simply didn’t want to deal with it. However, when it happened half-dozen times and joined up with some serious lightheadedness, I knew I had to bring it up. I’d start to see stars and then my right hand would start shaking like it was trying to develop a Polaroid picture. Those episodes could last up to a minute and my arm would be dead tired afterward.

It all warranted a call to Dr. D and Dr. O Thursday morning and I knew what that would mean. To the Emergency Room I went at their insistence, though I avoided it until evening when Craig got home from work. Craig was very worried. I can always tell by the dark bags that instantly develop under his eyes. I hate it.

The big worry from my doctors was pulmonary embolism (a blood clot in the lungs) or a blood clot somewhere else in my body. I already have many of the risk factors – blood cancer, chemotherapy treatment, not super active. A clot would kill me. The secondary worries were lymphoma had spread to my brain, causing the tremors; lymphoma had spread to my upper spine pressing on vertebrae or squeezing disks causing the tremors; very low blood counts; a heart issue. Awesome: something wrong with my heart or brain or a life-ending clot.

I lived in the Emergency Room for a full day. Literally, more than 24 hours – 5:30pm Thursday through 7pm Friday before I was transferred to a hospital room for a second night of observation. After about three hours, it was decided I’d be admitted, but it would have to be to a floor that had telemetry at the bedside, so that they could keep me on a heart monitor. These beds are limited and there were none to be found for me.

Craig stayed/”slept” there with me in a hard chair the first night with his forehead on a towel on a table. I “slept” for 15-minute clips on an ass-breaking, essentially cushion-less stretcher. I was tethered both from my port to the IV pole, which was giving me hydration, and the heart monitor via five lines coming off my chest attached to my skin with sticky pads, the glue from which I’m still picking off days later. After 12 hours and no signs of a bed opening, the ED staff was kind enough to get me a real hospital “bed” and move me to a room with a window in a quieter area. The bed felt like that in a luxury hotel room.

The Hartford Hospital Emergency Department staff was extremely kind, thorough and listened well to my symptoms. I am a fairly frequent flyer so I know the types of things they are looking for. But no matter how great the staff is, by nature the ED is a busy, loud, fast-paced place. Alarms, intercoms, alerts, patients yelling, seem to never end. The hospital is squat in the middle of the city and many use it as their primary care option, therefore it can get backed up easily. Plus, they handle major traumas flown in from emergency sites or the sickest of patients from other hospitals on LIFE STAR, the hospital’s critical care helicopter service.  

Every few minutes over the intercom – the same intercom that plays through patient’s bedside speakers would alert:

“Active trauma three minutes out!”

“LIFE STAR here. All appropriate personnel report to Red Pod!”

“Activated stroke five minutes out. Patient is not registered!”

“Any available nurse or PCA to Red Pod room 12 stat!”

“Patient assist needed in Orange Pod room 25!”

So on and so on. In the waiting area Craig and I witnessed a young man with an infected month-old gunshot wound. Yes, I saw the whole thing oozing through the shoddy dressing when he lifted his pant leg in triage. He was probably 17-years-old, shackled at the ankles and accompanied by a Hartford police officer.

Amid the intercoming, we heard a man screaming at the nurses in the hall. He was saying that his father came in there fine, they injected him with something and now he was in the ICU and they wouldn’t let him see him. He was demanding to see his dad, but was being too combative with the medical teams. Security came and there was lots of drama. And I thought I was having a tough day. The “Be kind for everyone is fighting a battle” quote kept repeating in my head.

My father wasn’t dying and I wasn’t recently shot, arrested and shackled, but the two-night hospital stint was pretty intense. I was given the full workup, kinda like the Gold Package at the car wash:

Intent: Check a brief snippet of my heart’s electrical activity

Test: EKG

Result: Normal

Intent: Rule out infections and check for deficiencies

Test: Blood pulled from my port and my arm

Result: Very anemic requiring transfusion (H and H 7.5 and 23%) meaning not enough red blood cells to carry sufficient oxygen around my body, platelets down to 33,000, white blood cells down in the 2s. All other chemistries looked ok and no infections found.

Intent: Rule out an internal bleed that would explain why my red blood cells dropped 10 points in one day

Test: Doctor stuck a lubed finger up my asshole and pulled out feces to check it for blood. Entirely pleasant experience. Case and point of what I mean when I say dignity is out the window and body becomes object during all of this.

Result: No blood

Intent: Rule out blood clot

Test: CT Scan with contrast that makes your whole body hot and you feel like you just peed yourself.

Result: No clots, only swollen lymph nodes showed, which we already know about.

Intent: Rule out chance of fluid that may have developed around lung or heart

Test: Chest x-ray

Result: Totally clear around heart and within lung, much improved after the whole pneumonia and drainage debacle of last month.

Intent: Track heart rate and blood pressure to watch for abnormalities

Test: Hook me up to a heart monitor that alerted angrily every time my heart rate rose above normal.

Result: I was going into periods of high heart rates up to 150bpm (an average heart rate for me is around 60bpm)

Intent: Check for cancer activity in the brain and/or discs pinching or lymph nodes pressing on cervical spine.

Test: MRI of my head and upper-neck. I was in the machine for one hour and 15 minutes because we were imaging two areas. I had to lay perfectly still for that entire time with my head squeezed in place in a cradle with pads on either side of it plus a mask – similar to a football helmet’s mask – over my face. I’d never had the mask before and when they lowered it to two inches from my face I thought I’d freak. But somehow I didn’t. By alternating between body scan meditations, visualizing myself on the Whitsunday Islands in Australia, and turning the deafening pounding sounds of the machine into song lyrics I made it through. The jack hammering was akin to the intro to Fat Boy Slim’s “Funk Soul Brother.” The earplugs they gave me did nothing to reduce the intensity of the banging as the oversized magnets did their work. I refused to open my eyes once I entered the narrow-ass tunnel for fear of how I’d react to seeing the face mask then the inside of the tube just a few inches further out. The tunnel is only about 24-inches in circumference. Buried alive much?

Result: No brain activity!!!!!!!!! A few lymph nodes showing in my upper neck, but likely ones we already know about.

Intent: Check for any structural abnormalities in my heart

Test: Echocardiogram, basically an ultrasound of the heart

Result: Everything looks structurally sound and working as it should

All of these tests on top of the incessant vitals checks are what kept me from any rest, but the results of which are now letting me sleep easy since I’ve been home. We ruled out many, many potential problems that my symptoms pointed toward. As awful as it is to go through it all, this is very valuable information and often as important as finding out what is wrong. It seems that it was all related to episodes of elevated heart rates and very low blood counts. We still don’t have a definitive on where the tremors and arm jerking came from.

I got the sign off Saturday afternoon with promises that I’d follow up with my oncologist and now new cardiologist. I was given a prescription for a baby dose of the beta-blocker Coreg. A heart medication I have been on in the past when I was having very similar episodes while in Texas for a clinical trial. A cardiology workup at MD Anderson Cancer Center found I was having periods of A Flutter and high heart rate. Like it did then, the beta-blocker will keep everything even-steven so that my heart isn’t working overtime.

Craig picked me up in our Jeep Wrangler. It was in the high 70s. The weathermen had been reporting all morning from my little, tiny hospital TV that it was a top 5 weekend. I had to shut it off so upset that I was missing it.

Knowing my frustrations of not only being stuck inside, but also being attached to an IV pole and a heart monitor meaning I had to call for someone to disconnect me every time I had to pee, never mind reach anything, Craig created a space of ultimate freedom for me. He surprised me by not only swapping the hard top for the soft top, but showing up with no top and no doors for a totally exhilarating, sun worshiping ride to Elizabeth Park where we checked out a huge healthy living expo amid the beautiful flowers. From chains to freedom.

The heart episodes seem to have subsided, though I’m getting used to how much the Coreg reduces my blood pressure as a side effect of keeping my heart rate even. I have to be aware of shifting positions and getting up too quickly. It takes longer than it does for most people for my blood to get from my feet to my head when I get up. I just need to take my time. No limbs have been flailing uncontrollably and my mind is more at ease knowing there are no tumors in my brain. I actually slept a soundless 12 hours last night and loved basking in the sun then running errands – top down – in the Jeep all afternoon.  

                                       I much prefer historic Elizabeth Park's scenery to hospital rooms. 

Gemzar Infusion 2

The chemo-absorbing offerings at BurgerFi.

I looked at the printout of my CBC bloodwork report with disgust. My platelet level was 63,000, down from 67,000 five days earlier when I was rejected from chemo. They were moving in the wrong direction.

My mom and I waited in the exam room to see what Dr. D would say, making our own hypotheses and tossing around scenarios as I tried not to cry in frustration. I was in bad pain that morning. It had come out of nowhere when I woke up. The pain was deep in my quad muscles and shooting through my pelvis. From the moment I got out of bed I was already cursing the steroids that cause intense muscle atrophy, my overzealous walking and water aerobics cockiness and the worry that the lymphoma was already trying to bust out of my bones again seeing as I’d only had one chemo infusion in a long time. Now, I was cursing my platelets’ performance: angry, teary and woozy from pain meds.

My heart rate was up – probably from the pain, Dr. D said. We talked things out thoroughly and thoughtfully, all three of us on the same page that I was between a rock and a hard place – or more accurately, cancer growth and death by bleed-out. Maybe that’s a little extreme, but everything seemed extreme Wednesday morning in that little room where the lights are too bright and the chair placement too awkward.

My platelets were technically too low to get another treatment. We learned from the first dose that they are very sensitive to the Gemzar, so if we whopped them again while they were down, we could only assume that they would be killed off even further. Very low platelets equal very high bleeding risk.

However, if I didn’t get chemo then we would really be falling off any kind of schedule and risk the chance that the infusions wouldn’t be effective. Here was my scientific theory: If we let so much time go in between infusions then are we just playing whack-a-mole? Let the cancer grow a bit, then come in and knock it back, then let it grow again, then come in and knock it back. Seems silly. The whole point of this little project I’ve gotten myself into is to abolish the lymphoma that’s rearing right now, knowing that the side effects might be rather harsh. Then, get me off of this when I start really feeling better and get back onto milder, more sustainable, lifelong treatments (or second transplant – eek.ugh.barf.scary.potential.).

Dr. D admitted that this was his worry as well. He wondered if we should push me a bit more. I looked at him with wet eyes and said that I was very disappointed in my platelets. We laughed a little and he assured me it wasn’t my fault and said he wanted to collaborate with Dr. O – see if he might agree that we should push a treatment. Would I mind waiting?

My mom and I took a place in the open infusion room, passing the time with a port flush and sed rate blood draw waiting for the NY and CT doctors to connect. We read and chatted, trying not to disturb the two older men filling chemo La-Z-Boys, one deep in sleep while receiving a Reiki treatment. I was so anxious. I don’t think I’ve ever wanted chemo so bad.

And, I got it. My two docs decided to hit me with a reduced dose of Gemzar as a compromise between not damaging my bone marrow too much and allowing the drug to keep working against the cancer. Fantastic plan! The chemo dripped over half-hour and we were out to enjoy the 70-degree weather and sun, both starving, me ferociously after the pre-chemo Decadron steroid.

Driven by my Decadron cravings, I was more than happy to introduce my mom to a new burger joint not far from the Avon Cancer Center. We sat on the patio in the sun and indulged in the high-calorie deliciousness of a cheeseburger, Parmesan herb French fries and custard milkshakes. The food absorbed the drugs within me and I immediately felt more stable. The pain began to subside as an added benefit of the steroid. We further balanced the unpleasantness of the morning with a trip to HomeGoods to poke around and search for curtains for our newly redone dining room. The day such a positive turnaround with good company, food, and shop therapy.

The continued “Special Karin Regimen” seems to have worked as well. I have been feeling great since Wednesday’s infusion. I even skipped much of the requisite chemo wooziness I most always feel for a few days after receiving any drug. I think we may have found my magic dosing. Sure, I’m tired and a little achey, but I’ve been up for lots of social events, seeing friends, taking Sam Dog for walks, and writing on our porch in this ridiculously nice weather. Yesterday’s bloodwork revealed my platelets climbed to 77,000! Hopefully that trend will continue and my bone marrow will be up for another Wednesday dose. 

Try Again Tomorrow

No chemo last Friday as scheduled. Here starts the “Special Karin Regimen.” We have no idea how my body will react to the Gemzar (Gemcitabine) so it’ll be a trial and error process – schedule and dosage determined by my body’s reaction. I have to learn to be more flexible than I thought I already was.

It was my platelets (the blood cells responsible for clotting) that took the hit. They were down to 67,000. Bottom range of normal is 150,000. It would have been unsafe for me to receive another dose, as decided by both Dr. Dailey and Dr. O as I sat in Dr. Dailey’s exam room waiting to hear what he’d decide to do. To get another treatment would likely knock my platelets down to the 20s after it took me to my low point and that could lead to dangerous nosebleeds or internal bleeding. Not worth it.

No doubt it is difficult when you get all geared up to get chemo and then it doesn’t happen. These days, especially, it takes a lot for me to get my mind ready to face it. I put together a snack pack and reading materials and plan my day around being at the infusion center for a couple hours. It’s an exhausting ordeal and even though I did not get chemo last Friday, I was almost as tired as if I had anyway from coming down off the build-up and just from sheer exhaustion – proven in my bloodwork.

But if my body wasn’t ready, it wasn’t ready. We have to wait for my platelets to come up on their own: there is no magic bullet to encourage them, only time. We will try again tomorrow, Wednesday. I have to keep my mind neutral. I may or may not get treatment. I may or may not feel like shit for the following few days. Sure makes it hard to plan for anything.

Positive news is that my other blood counts looked fine at Friday’s check. My white cells did not dip at all, so I got to escape any bone marrow stimulators like Neupogen and all the fun bone pain they bring. The lymph nodes that I’ve been able to palpate on my collarbone for months have reduced and my pain is better. The numbness in my breast now waxes and wanes with very strange feelings of cold, ache, to shooting pains, I suppose this means it’s waking up? I’m told this is likely nerve damage that will take a long time to heal. To my doctors and me this means that at least symptomatically, the chemo is doing what it is supposed to do. That assumption makes it easier to take.

I’ve been weaning off the pain patch, the nerve pain medication, and the steroids. Every day and every drop down I feel a little bit clearer, but the drops are tough as my brain and emotions try to catch up. It all makes me real tired. Pretty much I’m either in a real good mood or a real snippy mood. I look forward to flushing this all out of my system and stabilizing a bit.

Sidebar: These beautiful, artistic, hearty mugs inscribed with painted feathers arrived at our door. However, there was nothing to identify their sender! We so appreciate them – and of course the feather symbolism, which makes me know they are from a blog reader (mad detective skills). Let me know who you are so we can thank you! 

Working My Way Out

photo courtesy

Salvage treatment has started. I had my first infusion of Gemcitabine (Gemzar) chemotherapy this past Friday. It is not a drug that is new to me: I once received it as part of the regimen GND, one of the first regimens we tried to get me into remission after I relapsed from my autologous stem cell transplant in 2010. Now, we’re hoping it’s the lone ranger that will be my “get out of jail free card,” as Dr. O puts it. I don’t think it’s going to be a “free” ride by any means, but more of a “guaranteed” ride, as it’s well proven to work against HL. The side effects are supposedly small compared to other chemos, but chemo is chemo and it still makes me feel like shit. And for me, after being through so much of it, unfortunately, I’m more sensitive to those side effects.

This plan hatched after a long conversation at Columbia with Dr. O, my mom, and myself after he and his team had poured over my treatment history and attempted to find creative ways to get me out of this current situation.

A positive takeaway was that Dr. O said the amount of disease I have in my body is really unremarkable. He says that normally looking at my PET Scan and CT Scan results, doctors would give a shrug and give a “eh.” Unlike other patients, I am not contending with a 9cm mass pressing in my chest. For this I am grateful. What I am contending with is disease that – though scattered and therefore not causing any immediate danger ­– is in annoying places that causes it to be symptomatic. Annoying places like my bones and along my vertebrae, which leave me with pain syndromes. Because of this, we must treat a little harder so as to not allow those places to get worse.

We are dose escalating this drug, not using the normal protocol, but a special “Karin protocol” because we know how compromised my bone marrow is from all the treatment I’ve received – most especially my two stem cell transplants. With each treatment it gets harder for my body to muster the strength to create new cells after the chemo wipes them out. My body is tired. Therefore, we’ll watch my blood counts closely, as Gemzar can especially take a hit on my platelets. If things look good, we may add in another drug to the mix. I’ll be riding out this plan for a few months and we’ll depend on my symptoms to reveal improvement and will put off imaging until necessary. Another thing to remember: all of these PET and CT Scans expose me to more radiation, which means more cancer risk.

We had a lot of laughs with the doc and his amazing nurses. Dr. O and I hugged it out solidly. I know he wants the best for me and that I’m in good hands. I love the connections that I have with the team through e-mail and how I never feel like I’m floating out on my own. Though we have these really serious conversations, we can follow them up talking about our favorite candies and how my hot flashes were causing me to strip on the train and how the Decadron he gave me would have me pushing the damn train back home. It feels good to feel like you’re in a human environment.

Fortunately, I am able to receive the chemo locally at Hartford Hospital so as to avoid weekly trips to the city. I feel even more at home here, having been treated at the Helen & Harry Gray Cancer Center on and off for almost four years now. Secretaries, lab techs, nurses and doctors aren’t just my medical team, but truly friends. Not much changes there which is comforting, but also sickening as it brings back a lot of tough memories. I do my best to focus on the sweet moments and not break down at the saddened faces of those around me in the other chemo La-Z-Boys. This chemo drips over only a half-hour, making it about a 90-minute trip with pre- and post-meds, port insertion and removal and rigamarol. Not too bad. Then it’s just a 20-minute vs. 3-hour ride home to my couch where I can sleep it off. So far Dr. D and Dr. O are working together seamlessly and I’ll take the trek into the city once a month to check in and get checked out.

Though the infusion process was just another infusion process, it’s been a chemoey few days. I wanted to see no one over the weekend, and I was in quite an emotional downturn. The fatigue was – and still is – pretty tremendous. If I put my head down, I am asleep. My body also has that familiar swollen feeling both from the chemo drugs and the extra super Decadron steroids I get with the infusion. We are again trying to get me off of steroids of any kind since we can now rely on the chemo to hopefully be holding back the cancer. My eyes are bulged and my muscles and lungs even feel very tight. I went on a walk around my neighborhood yesterday and it was very hard: hard to breathe and even hard on my muscles.

Gotta have goals. I will be strong again.  photo courtesy

I’m realizing that I am very out of shape as I’ve had to “lay low” so much after the pneumonia debacle, long hospitalization, pain syndromes then biopsy procedure. Finally this week, I get the go-ahead to start using my arm again and my plan is to ramp things up again – gently, but consistently. I have this incredible urge to get strong again. I hate the feelings of weakness and lethargy and I don’t want to bow down to the chemo. Today was a much easier walk with Craig and Sam and this week I’m going to take my first dive into water aerobics – gentle, supportive, non-impact and a certain way to make some senior citizen friends at the Y.

Soon – hopefully only a few months of this ­– and fingers crossed, we’ll be able to decide the next step as this is not a sustainable treatment. I already got all choked up in the doctor’s office anticipating what that next step will be. It will be a massive life decision, as if I have not made enough of those already.

If/when the Gemzar does what it is expected to do, I will ideally be left in a state that is real close to remission. Now, what to do with that remission will be the big question. I’ll immediately jump to a clinical trial with the hopes of it holding that remission in place as much as possible. Then I have to decide: stick with the clinical trial route and hope that science keeps moving fast enough that I can jump from one to the next for the rest of my life – keeping things in a potential state of constant flux. Or, strike while the iron is hot and take advantage of the only short remission I may ever get and attempt a second allogeneic stem cell transplant, this time with a matched, unrelated donor.

This second option scares the shit out of me, but it is an option, probably the only option besides some miracle or huge scientific advance that could guarantee me the highly coveted long-term, cancer-free remission (after a long recovery process and most certain bouts with risky graft vs. host disease along the way.)

No matter what, I do want to know if this option is even a viable option for me. I like to pour over options. Could my body handle it? Is it advisable? Is there even an unrelated donor out there on the Be the Match registry that is a close enough match to me?

Time is of the essence, as I learned with my first transplant. If I do reach remission from the Gemzar, I need to be able to jump immediately when that happens. Therefore, we need to start tapping resources now. I’m being connected with transplant doctors at City of Hope in Los Angeles and with Fred Hutchinson Cancer Center in Seattle: the two leading transplant centers in the nation with regard to second transplants/haplo transplants/mis-matched transplants – all the fancy stuff I’d be getting into. It’ll be good to find a team and a pseudo-plan now so we’re not scrambling. The Columbia transplant doctor will also begin searching the marrow registry for a match for me, and I’ll be in touch with my Sloan team as well.

Deep breath. As much as I want to say that is all months away and I don’t need to worry about it, I do need to lay a foundation and that takes time, fortitude, and along with that comes, confusion and anxiety. At the same time, I need to focus on getting myself through this immediate step, incorporating the weekly infusions into my life, getting my strength back and highly refocusing on my healthcare plan. I need to do whatever I can do to complement/combat what this chemo is doing in my body so that I’m ready for the next step.

And not just the treatment steps. I’m also gearing up for another beautiful summer of paddle boarding and kayaking, weekend beach travels, more writing opportunities and volunteering. More living my life out loud rather than on the couch. The end of winter was rough in many ways and I’m ready to break out. Right now I’m sick of recovering from this chemo and it’s only been three days. I need to get over that, take a gut check and be grateful I even have this option. I need to be gentle with myself and also kick my own ass. Easy f’in peasy, right?