Treatment 5, Side Effects and Other Scary Things

Treatment 5 went relatively well with no real issues to speak of, besides the normal side effects that I’ll speak to in the rest of the post. I saw my oncologist while I was in the infusion clinic, and we briefly discussed what will happen over the next couple of months. He really wants to hold off on talking specifics until we get to the end of chemotherapy and know whether any cancerous cells remain, so the plan is to have my next (and last!) treatment in three weeks as usual. About a month after that, I will have a PET scan to determine if any cancerous cells remain. If not, I will go into the post-treatment management/remission phase. If there are still cancerous cells present, I will begin radiation.

About 50% of patients in his service with a tumor that started at approximately the same size as mine have had to do radiation therapy – I’m hopeful I fall in the other 50%. From what I understand, the fatigue due to radiation is even more intense than the fatigue I’m feeling due to chemo, although it’s hard to believe I can be more tired than I am now. Obviously, I would much prefer to go into maintenance/remission than radiation treatments, but no matter what happens over the next few months, I know the end of all this is in sight.

There are a number of other side effects that I deal with due to chemo in addition to hair loss. I’ve been relatively lucky in that most side effects have not been that intense. I think some of this has to do with my relative good health and age prior to my diagnosis.

At any rate, I thought it might be informative to talk about the general side effects that I have with each treatment. For any cancer patients who might be reading – please know that chemo affects everyone differently so this certainly is not the be all and end all of side effects, even for R-CHOP specifically. In fact, some of the best advice I received prior to beginning treatment is to not read into other patient’s chemo “stories” too much, because it can be very different for everyone, even patients who are relatively similar in the type of cancer they have, the chemo they receive and their profiles prior to diagnosis. However, I do think it helps to know generally what some of the hurdles are.

Nausea/Vomiting – Other than hair loss, this is probably the best known side effect of chemotherapy. R-CHOP typically causes about a 48 hour window of nausea and possible vomiting post treatment, although I only feel/get sick the night of the treatment. In recent years, a number of anti-emetics have been developed that help curb nausea and vomiting significantly. I receive a dose of Zofran right before treatment through my IV and then I take Compazine over the next 48 hours at home. Generally speaking, these medications do help, although I still do feel nauseous and sick the night of my treatments and they don’t help much when you throw them up right after taking them. That said, I would hate to think how I would feel if I didn’t have these medications.

Fatigue – This is the side effect I feel the most day to day, especially now in the later rounds of treatment as the chemo builds up in my system. This isn’t so much a feeling of sleepiness, although I have become quite cat-like in that I can easily curl up in the recliner in our living room and fall asleep in about 10 seconds. This feeling of fatigue is more just an overall body exhaustion where it’s become a struggle sometimes to walk up a flight of stairs without feeling completely winded (thank God we live on the first floor of our apartment complex). Basic errands have become something I really have to plan for so that I can do them when I’m feeling most energized, although the fatigue just hits me like a ton of bricks at random times, so it can be hard to plan. If I go food shopping and forget an item at the other end of the store, there’s no way I go back for it now – I just leave it for the next trip, because I’m just too tired most of the time to go back. I’m not going to lie – I would do this out of laziness before I was diagnosed with cancer. Now I just have a better excuse to be lazy.

Dehydration/Digestive Tract Issues – I’m not going to into gory details here, but I’ll just say that chemotherapy dehydrates your entire system. Your skin, lips, cuticles, and the inside of your digestive tract (including your mouth – I have dry mouth like you would not believe) all become very dry. I have to be unbelievably diligent about drinking AT LEAST 64 ounces of fluids everyday, if not more, to prevent my GI tract from getting too dried out and I’ll just let you imagine what happens when things dry out too much. I am taking a bunch of medications to deal with this side effect. Although, if you’re not careful, things can swing in the opposite direction as well. Basically, between GI tract issues and the amount of water I have to drink every day, I can’t be very far from the bathroom at any given point in time. I also have to continuously moisturize my skin and be really careful about brushing my teeth often. The dry mouth can cause mouth sores that can become painful and infected. Thankfully, I haven’t had any of these bad boys.

Metallic/altered taste – After chemo, I usually experience a weird metallic taste in my mouth for at least a week or so. Many things have an altered taste now through the entire round. It’s quite odd to know what something should taste like, only to have it taste completely different. This is a relatively minor thing to deal with as I know everything will go back to normal once the chemo is done.

Peripheral neuropathy – One of the main side effects of vincristine (one of the more effective chemo drugs in R-CHOP) is peripheral neuropathy, which essentially means that your fingers and toes may become numb/tingly. I’ve only experienced this intermittently and it hasn’t been particularly strong. There are some days, however, where it’s more intense than others which generally results in butterfinger syndrome until the feeling comes back. The neuropathy has now extended to my teeth, so they’re really hot and cold sensitive. I can get around this fairly easily, though, by letting food/drinks cool off or heat up before I start to eat/drink.

Neutropenia: Chemotherapy kills off all of the fast growing cells in your body, including the white blood cells, specifically neutrophils, that help to fight off infection. These cell counts will drop off at a certain point in each round, which varies for everyone. My “nadir”, or low white blood cell/neutrophil count period, occurs from day 10-16. I’m immuno-compromised during this period, so I need to be more careful than usual about exposing myself to infections/diseases, etc. I’m pretty obsessive about washing and sanitizing my hands all the time.

I also have to go on what is called a neutropenic diet. This means that I cannot eat uncooked/undercooked meats, raw/thin skinned fruits/vegetables, yogurt containing live cultures, veined/goat cheeses or cheeses containing uncooked vegetables, and cold cuts, among other things.

I’ve struggled with my weight for years, and in trying to see the bright side of things, I thought maybe I would actually lose weight while on chemotherapy. Prior to being diagnosed, Jeff and I changed our diets dramatically and I lost about 35 lbs. Our new diet included a lot of whole grains and, more importantly, a lot of fresh, raw fruits and vegetables. The neutropenic diet now takes those out for me for a good portion of each round.

In addition, because of the weird metallic taste and lack of appetite that chemotherapy can cause, my oncologist and primary doctor told me to go ahead and eat whatever I’d like when I feel up to it. I’ve basically taken this as carte blanche to eat everything I hadn’t eaten for the past year. Ice cream or sherbet? Sure! Burgers and fries? Absolutely! Dessert after dinner? You betcha!

The upshot? Rather than losing weight like most chemo patients do (a potential benefit for me), I’ve actually gained 10-12 lbs. (Sigh…) I know it will come off easily, but it’s still demoralizing. I keep telling myself that it’s the prednisone that’s making me eat more than normal, but that’s just an excuse. Every now and then I get a hunger pang at a weird time that’s probably due to the prednisone, but I know that my eating habits since I’ve been diagnosed are really just due to me focusing solely on the cancer/chemo and not on my diet quite as much. I’ll easily go back to eating well as I did before and I know the weight I gained will come off. Let’s just say I’m wearing a lot of sweats right now.

Fortunately, I haven’t contracted any infections during the neutropenic state of each round. This is actually the most dangerous potential side effect for most cancer patients. I have to be really mindful of my temperature. If it ever climbs over 100.4 degrees F, I would have to call the cancer clinic and most likely would end up in the hospital for IV antibiotics. Complications due to infections are potentially life threatening, so the support I’ve received from work to be on medical leave that has allowed me to stay home during my treatment has helped me stay infection free thus far.

And other scary things…

As if that all wasn’t enough, there have been a few moments throughout this process where I’ve been reminded of how sick I really was/am.

After my fourth treatment, my oncologist and I talked about the reduction in size of my tumor from 12-13cm to about 5cm. He said, “You know, I didn’t want to say this while you were in the hospital, because we were being so progressive but you were really sick. That was one of the fastest, most aggressive tumors I’ve seen in awhile. I’m really happy with this progress that we’re seeing given the starting size of the tumor.”

This made me think about how I perhaps glossed over how sick I was in the hospital since I was determined to only think positively. As I mentioned in an earlier post, my tumor was so large to start that my doctors didn’t feel comfortable letting me go home until after my first treatment. Frankly, I didn’t feel comfortable going home with knowing that the tumor could occlude my trachea or esophagus or damage my lung. Fortunately, nothing along those lines actually happened but it could have been terrifying had this happened at home. This further highlights how grateful I am that I went for a follow up appointment and that my doctors encouraged me to get the appropriate tests done before I left the hospital complex. Had I not done those things, I could have been in a much worse situation.

When you’re admitted to the hospital, a social worker or an intake nurse usually comes by to see if you have a living will, power of attorney, or other directives. Since I wasn’t exactly anticipating ending up in this situation at 30, I didn’t have any of this set up. This conversation didn’t really bother me, though, since I know it’s standard procedure.

However, once I was moved up to the oncology floor prior to my port placement, one of the doctors from my medical team came up to ask me about my wishes regarding resuscitation. They didn’t think an issue would arise where it would be necessary to know my wishes, but they wanted to make sure they had it on record, just in case. They also recommended that I discuss my wishes with my husband so that someone, outside of them, would be familiar with what I wanted.

I always thought I knew what my decisions would be regarding resuscitation, should I ever end up in a position where it was a possibility. Prior to being in this hospital, I couldn’t really bare the thought of being shocked back to life or having a tracheotomy tube placed in my throat. However, when you’re 30 and in a position where this could be your only option of coming back from an unforeseen issue and potentially be given back the rest of your life, you begin to have second thoughts.

In fact, I told the doctors that I would want them to give it their best shot to bring me back. However, the last thing I wanted was to be a burden to my husband and my family, so I would not want to be maintained on life support should it get to that point and there didn’t seem to be hope that I would come back essentially fully functional. Sounds antiseptic, right? But this is how I felt like I had to process everything. I couldn’t be emotionally involved and think about how gut wrenching this all would be for my husband and the rest of my family. I had this conversation with Jeff, in person, as soon as I could. I wanted him to know exactly what I wanted and was sure to communicate this clearly so there was no question for anyone. Fortunately, we didn’t need to institute any of these plans.

The scariest thing for me is probably somewhat surprising – discharge from the hospital, time to be bounced from the big house. You would think I would be ecstatic to get the heck out of there after nine days, but actually I was really, really nervous. I had just finished up my first treatment the night before and for the past week+ time, I had roughly a dozen doctors coming into my room several times a day to check on me, including the head of my medical team and my oncologist. I never felt like anything too bad would happen if I was in the hospital. My nurses were just a button push away and they came with all of my medications at the right times and right dosages. The nursing assistants monitored my heart rate and blood pressure. I didn’t have to worry about much – I just had to lay there, watch TV, surf the internet and be carted off on a gurney for this test or that scan whenever anyone told me to go. All my meals, as mediocre as they were, were brought to me in bed. This whole hospital thing wasn’t looking so bad. There were no appointments to schedule, no prescriptions to fill, and no real life responsibilities to add to taking care of myself while at home with cancer.

It took a few days of lots of sleep, but I ended up being able to manage everything at home after a few days of adjustment. I didn’t feel great, but it wasn’t too tough to figure out what medications to take and when. I enjoyed being at home in our bed again, watching my own TV, catching up on DVR’d shows and eating a bit of food from our home. Now, I try to avoid having to go back into the hospital but I’m happy that I was there through the initial diagnosis and treatment. It made me feel more secure and taken care of.

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A note about my overall tone and a lesson learned during my last treatment…

So many of my friends and family have commented on how much they enjoy reading my blog because of my sense of humor about everything I am going through. I’m glad to bring joy to others and I think it’s important to show that cancer isn’t necessarily something to be completely feared.

However, I believe that I have the luxury to have a good sense of humor about what cancer has thrown my way, largely because I know that I have a curable form, and especially now that I know that R-CHOP is, so far, successful for me. As I’ve said before, I’d like to think that I would be just as positive if I had a form with a different prognosis. I honestly hope I never have to test this theory out.

Believe me when I say with all sincerity that I do not take this disease lightly. I just choose to see the comedy in the situation where I can and approach my treatment with as much positivity as possible. I still believe strongly that my positive attitude, and the positive attitudes of those around me (including my parents and sister, my husband, my friends and my doctors/nurses) have contributed to my overall good prognosis and treatment. It doesn’t take much, though, to remind me how fortunate I am and how difficult this disease is for so many people.

My infusion clinic is composed of open pods of four rooms. This does allow some communication between patients, which is nice, but it can also mean that we’re exposed to difficult moments experienced by others in the pod.

When I was in for my last treatment, an elderly gentleman (I would say in his 70s) came into the pod for the start of his next chemotherapy round. He sat down in the chair, obviously frustrated and expressed his frustration to his nurse who shares the pod with mine. He didn’t really seem to understand what was just discussed in his doctor’s appointment prior to coming to the clinic. He was unsure as to why he was undergoing this specific chemo again and his doctor mentioned something about a CT scan but the gentleman couldn’t understand why they were doing chemo before the scan. He asked the nurse to hold off on starting the chemo until his wife and daughter came up so the nurse could talk to them.

When they arrived, they seemed just as frustrated and unsure of the situation. His nurse decided to take a look at the notes that his doctor entered after the appointment, and as she read them, I heard her say, “Oh, crap” under her breath.

She asked the gentleman to come to the computer and read the notes with her. Apparently, he has a third recurrence of esophageal cancer. He’s undergone two different rounds of chemotherapy (the first was more successful than the second), surgery to remove a portion of his esophagus, radiation, and he just completed a clinical trial that seemed to be unsuccessful. CT scans showed that the cancer had recently metastasized to his liver and his doctor was prescribing the chemotherapy that worked on his esophageal cancer initially, in the hopes that they could at least curb that. He ordered a PET scan to see the extent of the metastasis.

This was obviously not good news for the man or his family. He went back to his room and said, quite clearly, “I cannot go through this again”.

I’ve only been through a mere fraction of what he has been through and I could completely understand that initial reaction. Chemo is tough enough – to have to go through it three times, plus radiation, surgery and a clinical trial, is not a small feat.

As soon as he said that, I could hear his wife and daughter start to cry. He looked at them both, probably knowing how much that comment hurt. His nurse said to him, “You have two beautiful women who are sitting here with you and clearly love you very much, but whether you go through this treatment again has to be your decision. You cannot do it for anyone else but you and if you make the decision to go ahead with it, you’ve got to follow it all the way through – it’s the only way it will have a chance of working for you.”

(The hematology/oncology nurses and doctors are truly a special breed of health care worker. I can’t imagine how many times this nurse has had to give similar news to her patients, and I’m sure it doesn’t get any easier.)

This was a reminder that cancer is a weird, twisted, and evil disease. It can hit one person and be a relatively straight forward case that resolves itself quickly. It can hit someone else and just be absolutely relentless, returning again and again, despite everyone’s best efforts to keep it at bay. Sure, age, prior health and risk factors play a role but certainly people like him have had an easier time and people like me have had it much harder.

The man was quiet for a moment, and then said, “Let’s get going with this. I want to do the treatment.” He then began to crack jokes with the nurse, his wife and daughter, telling them they couldn’t get rid of him just yet. I could tell he was a feisty man, and I felt like if he could joke around, then it was okay for me to do the same.

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Who loves ya, baby? (Or the story of how my hair fell out)

Chemotherapy comes with a lot of side effects but by far, the one that I get asked about the most is the one I live with every day: hair loss.

For many female cancer patients, hair loss is one of the more traumatic experiences one can have while undergoing chemotherapy, and it comes with lots of tears and heartache. While it might seem silly to agonize over hair that will eventually grow back, understand that this is often the only easily visible sign that you have cancer, and while other side effects come and go, you’re reminded of your hair loss every time you see your reflection. Many women feel like part of their femininity is yanked from them when they lose their hair, and let’s face it ladies, if you’ve ever had short hair you know how much of a pain in the neck it is to grow it out. Imagine having to grow it out from stubble – there’s no amount of barrettes or clips that will help you through that easily, so the tears could easily be for that process more than anything else. It will take a long time to have it look presentable again, so that reminder of cancer sticks with you for awhile after you are otherwise rid of the disease.

When you’re out in public, a bald head is also generally the only way that other people can identify you as a cancer patient, especially as a woman. I wear a hat or scarf when I go out now. I don’t think I’ll ever go out bare headed in public, but even with my hat or scarf, it’s still noticeable that I don’t have any hair. Just the other night, Jeff and I were sitting next to two women at a bar while having dinner and one said to the other, “I wonder if she has cancer?” while looking in my direction, and the other woman said she thought so. She should have just asked me – I would have been glad to share. Instead, I sat there like a hat-wearing side show. The point is that losing your hair makes it blatantly obvious to the world that you’re sick.

Talking about hair loss was one of the ways I figured out I have an oncologist who will always give me the straight answer to every question I ask and who knows this disease really well. While I was in the hospital, all of the oncology nurses said I “may or may not” lose my hair. I saw my oncologist at a follow up appointment one week after my first treatment (day 7 – still with all of my hair) and we went through the list of prescriptions I had to manage the chemo side effects. After we got to the end of the list, he said, “I know it can be really difficult for a woman to lose her hair due to chemo. I looked into it this morning and your insurance company will cover – and I know this is going sound weird – a hair prosthesis. Would you like me to write a script for you?”

The thought that the medical term for a wig was a “hair prosthesis” was hysterical to me, as if it was somehow more medically sound than just calling it a wig. A wig is a wig, not a replacement appendage. I said, “Well, the nurses in the oncology ward mentioned I may not lose my hair. Do you think I’ll definitely lose it?”

He said, “The nurses upstairs are great and try to calm patient’s nerves, but I’ll be honest with you. You will lose your hair, and it will probably begin to fall out next Tuesday night or Wednesday so if you would like a wig, I’ll need to write the script today so you can get it made in time. But remember, losing your hair is a good sign in the long run because chemo acts on fast growing cells, including your tumor and hair.”

There were no ifs, ands, or buts about it. I was going to lose my hair. I thought about it and decided that I didn’t want a wig. I was going to be on medical leave from work, so I didn’t have to worry about what my students would think and all the people I was going to be around for the next six months knew that I have cancer, so who was I fooling? I understand that many women prefer to have wigs instead of wearing hats or scarves, and I say go with what makes you feel your best. That said, they just don’t look real to me and from what I understand, they can be very uncomfortable. Plus, I figured if I wasn’t going to have hair, I might as well take advantage of being free from the shackles of hair care all together.

After my appointment, I began to wonder what it would be like to lose my hair. Would today be the day that it starts? Would it happen in the morning? The afternoon? Before I go to sleep? While I was sleeping? Would it fall out in the shower? Would a pony tail pull it out or prevent it from falling out? Some people recommended that I start to bring hats/scarves with me when I go out in case it begins to fall out while we were out somewhere! What?! It could all fall out spontaneously? Would I be out to dinner with Jeff and all of the sudden my hair would drop to the floor? That was a horrifying thought. I could walk into a place with a head full of hair and walk out like a Mexican hairless dog!

As it turns out, Diem Brown from the MTV Real World/Road Rules Challenges (one of the guilty pleasures in our house) was diagnosed with ovarian cancer for a second time and has been blogging about her experiences for PEOPLE magazine. She created YouTube videos that captured her hair loss throughout the entire process, which were really helpful for me to watch before my hair began to fall out.

Sure enough, just like my oncologist predicted, I noticed a much bigger than normal clump of hair in the drain cover after a shower on the Tuesday afternoon following my appointment. I thought maybe it was just my mind playing tricks on me, but I brushed it after I got out of the shower and sure enough there were huge clumps of hair in the brush, much more than my usual shedding.

More and more hair began to fall out over the next few days. I left clumps of hair in my wake every time ran my fingers through it, put on/took off a hat, put my hair up in a ponytail, pulled out my hair elastic, washed my hair, brushed my hair, and eventually just moved in any way. Of course it first fell out all along the part in my hair. Wouldn’t it be nice if it could at least fall out under the top layers so I didn’t have huge visible bald spots for a bit? I wasn’t so lucky. My scalp got a little sore, too, as if I left a tight ponytail in for too long. Eventually I got to the point where I knew I was going to look ridiculous if I was left with measly clumps of hair and a bunch of bald spots, so I made the decision to shave it.

I dropped Jeff off at work on Saturday morning. I figured that was as good a time as any, so I grabbed my hair trimmer and brush and headed into the bathroom. I began to brush my hair to pull out as much as I could. It really wasn’t painful – just shocking to see your hair matted up in the brush instead of on your head. I kept brushing until there wasn’t quite so much coming out with each stroke. I looked at myself in the mirror and had about a third of my hair left but it was sparse, with patches of long hair here and there. It got to the point where it had to be shaved off, so I turned on the trimmers and buzzed a section straight up the middle of my scalp.

Does this guy come to mind?

There’s no coming back from this style, quite frankly. Once you make the decision to shave it and you go right up the middle, you’re committed to being bald. Then,

became my internal soundtrack and remained an earworm for days afterward.

I kept going around my head in all directions, with every move of the trimmers causing huge clumps of hair to fall to the floor. Suddenly, I wondered what my head was actually going to look like under all this hair. I have a giant head as it is – I was just hoping I didn’t have any dents or weird birthmarks. Maybe I could pull off the cool punk girl vibe? Would I look absolutely ridiculous? I could only hope I would look as gorgeous as Natalie Portman sans hair.

nm_portman_ssv_

And not so much like this:

Bald Britney

(Poor, poor Britney.)

Ultimately, I fell somewhere in between when all was said and done. I had some dark peach fuzz all over my head, but there wasn’t much to speak of. (After the second treatment, even a lot of the peach fuzz fell out.) I threw on a knitted cap and went to pick up Jeff from work. When I got there, I whispered to him that, “I did it” but I was afraid to show him, even when we got back to the privacy of our own home. I kept hemming and hawing about taking off my hat, not really sure what I was afraid of.

Eventually, Jeff got tired of me being a lunatic and pulled the hat right off of my head. He took it in for a second, kissed my forehead (Awwww….sorry for showing you have a sweet side, Jeff), and said it wasn’t a big deal. My response:

“Who loves ya, baby?” in honor of the greatest bald headed person to ever grace the Earth with his presence.

Telly_Savalas_Kojak_1973

Then we ate out using a Diners Club card and Jeff threatened to throw my head in the Shine-O Ball-O.

shine o ball o

Honestly, I found the whole hair loss experience pretty funny. It’s kind of like your hair says, “Oh, you’re getting chemo? Well, that’s it…I’m out”. Then you’re left bald and cold. You really do lose a lot of heat through your head.

Since then, my left eyebrow has started to fall out while the right one is still hanging on. This is actually more traumatic since you can’t do much to cover this up in a natural way. I can either draw them in as best I can or go eyebrow-less, which I’m avoiding like the plague. One of my eyebrow hairs fell out this morning after I washed my face and I dove for it like I could reattach it. I’m just hoping I can make it through the last two treatments with the remnants of my eyebrows and eyelashes attached to my face.

It can be tough to feel attractive with no hair. Some mornings I wake up and feel like a naked mole rat, but I find that I don’t feel half bad if I wear colorful and stylish clothes (as opposed to sweats and PJs) and put on makeup, big, colorful bangle-y earrings and other accessories. It especially helps to get done up as best as I can on treatment days. I now subscribe to the theory that if you look good, you feel good.

There are some advantages to being hairless, though.

1) Pretty much all of the hair that you would normally pluck, shave, or wax falls out. This makes general upkeep a whole lot easier, and since I have no hair to wash or shave, my showers and “getting ready” rituals are a lot shorter. Jeff appreciates this more than me.

2) No shampoo, conditioner, mousse, or hairspray to buy.

3) Most important – no upkeep of hair color. I was going gray before my cancer diagnosis and have been coloring my hair for years. Being free of touching up roots or reapplying hair color at home is kind of nice. As an aside, you would think that the gray hairs would fall out along with my natural pigment hairs, but oh no…those little hairs are stubborn, stubbly and still mocking me every day. Even chemo can’t kill them off. In the meantime though, I don’t have to be a slave to the box of color.

Since I didn’t quite lose all of my hair, I have some short little hairs that are now growing back. I’ve decided to keep shaving them down until after my last treatment and all the bald patches begin to grow in. I’ve heard that hair can grow back a completely different color and/or texture after chemo, so I’m hoping for something good. Either way, it will just be nice to have my hair back again and all of this behind me.

Lesser of two evils – my chemotherapy treatments

Since I’m currently staring down the barrel of the gun at treatment #5 in a few days, I figure now is a great time to describe the treatment process.

My first treatment was given in the hospital a few hours after my port placement and diagnosis. My oncologist felt this was important to monitor my overall reaction to chemotherapy and to make sure I didn’t experience tumor lysis syndrome. Tumor lysis syndrome occurs most commonly in blood cancer patients with large masses when the chemotherapy breaks down cancerous cells rapidly, and the contents of the cells are dumped into the blood stream. This can cause renal failure, heart issues, paralysis, and seizures, among other things. Sounds pleasant, right? To combat this, I was placed on allopurinol to protect my kidneys and a continuous IV drip of saline, which made me use the bathroom every half hour or so. I had clean kidneys but no sleep.

The chemotherapy treatment I receive is called R-CHOP, an acronym for rituximab (an antibody), cyclophosphamide, doxorubicin (whose chemical name is hydroxydaunorubicin), vincristine (used to be called oncovin), and prednisone (a steroid). I receive the R-CHO portion of the treatment via my port and take the prednisone as a pill on the first day of treatment through day 5 of the round. Each round is 21 days, so I receive my infusion treatment on day 1, continue with the prednisone through day 5, and recover for 16 days before starting it all again.

That first treatment in the hospital began at 4pm and I stayed up until it was done around 11:45pm. They started off with the rituximab, and I was supposed to receive about 900mL of it at a maximum rate of 400mL/hour but they have to build up to that rate. Some people have an allergic reaction to the antibody solution and so they start you on a very slow dosage and monitor you closely. My nurse told me to let her know if I began to feel any itching sensations, especially in my throat, because while it’s rare, some people have been known to go into anaphylactic shock. I wondered why this antibody was used if people have life threatening reactions to it. Rituximab was approved in the US in 1997 and kills both the healthy and malignant B cells in the blood, thus making NHL a curable disease once all of the malignant B cells are killed off. So, although the side effects are potentially hazardous, not taking rituximab poses a much greater risk to the life of the patient.

I’ve often heard from other cancer patients that receiving chemotherapy is merely the lesser of two evils. You are being treated for a disease that can kill you with drugs that wreak havoc on your body and are potentially lethal on their own but have the ability to save you in the end. Because I was so deeply in the mindset that I wanted to start treatment right away, it didn’t cross my mind that this whole crazy situation applied to me until the nurse said my medication could cause anaphylatic shock.

I was doing well with the rituximab for awhile until I was up to a dosage of about 200 mL/hour. All of the sudden, my scalp and back were itchy. I frantically searched for the nurse call button and asked if my nurse could come to my room ASAP. In the meantime, I walked as fast as I could to the bathroom, given that I was hooked up to a medication pump by all kinds of tubes. I looked into the mirror, and I had a rash all over my scalp and my back.

The nurse came in and she decided to roll the dosage back to 150 mL/hour and luckily, everything calmed down. No anaphylaxis, no more hives.  Although my nurses encouraged me to sleep after that, I fought it off because I really wanted to know what else would happen during the rest of the treatment. I don’t know what I was expecting, but after the rash, I didn’t want to miss anything else. Since you always hear about chemotherapy causing nausea and vomiting, I suppose I mainly thought I would projectile vomit at some point, Exorcism style.

It took another couple of hours for the rituximab to finish up. When it was done, my nurse hooked up the cyclophosphamide, which takes about an hour to drip in. No reactions there. Then came the doxorubicin, which is pushed through my IV from a syringe and finally the vincristine, which drips through the port for about 20 minutes. And like that, I was done with my first treatment with few issues. I tried to sleep that night, but it was next to impossible because I was waiting for some kind of horrible reaction that never really came. My oncologist told me that the first treatment was usually the easiest to handle, but being that I was the type of kid who got motion sick in the car, I thought for sure he would be wrong. (I will be honest, my weak stomach hasn’t been reserved for just childhood. I got seasick on a speed boat while I was on a parasailing trip with my mom for her birthday just a couple of years ago. Thank God I didn’t get sick while we were parasailing. I only tossed my cookies in front of the crew and six other passengers when we returned to the boat . By the way, I was a marine biology major in college. You would think I would be good on boats, and I was okay when we were initially going out of the harbor, but not so much in the open ocean when the captain was hitting waves so hard the boat went air born. My stomach wasn’t amused.) Anyway, the night passed uneventfully, and I was released the next day.

Since then, all of my treatments have occurred in an outpatient facility in the hospital. My visits begin with a trip to the phlebotomist, or the vampires, as Jeff likes to call them. Chemotherapy inherently knocks down my white blood cell count at about day 10 through day 16 of the round. During this time, I’m prone to infection, although it can be avoided with precautions. We don’t want it to get knocked down to a dangerous level where contact with any bacteria will get me sick, though. If your count isn’t high enough at the start of treatment to ensure it won’t drop too low later in the round, you have to wait for treatment until the count comes up again, which is a real pain. Assuming my counts are good, I visit the nursing assistant who takes my vitals and then I see my oncologist to check in. We usually talk about new side effects that might have popped up since the last round and about the plan of action for the round starting that day.

From there, I head to my oncology nurse and her pod of four rooms, all containing patients with different types of cancer. Some, like me, only come in once every three weeks. Some poor folks come in everyday of the week for an hour or two while others still come in one day per week for a few hours. All getting different drugs, all treating different things. My nurse somehow manages to keep track of everything, responding to beeping pumps notifying her that someone’s done with their dose or there’s an occlusion in their line upstream or downstream. I must say that I cause these quite often since I somehow end up sitting on the tubes or twist them while watching TV on my iPad.

My nurse comes in and first accesses my port with a needle to set me up for the day. She gives me Tylenol and Benadryl. During my second treatment, she figured out that she could give me the rituximab at the highest dose allowed if she gave me Benadryl before the treatment started. I hadn’t taken Benadryl in a long, long time and shortly after having it drip through my IV, I realized that I was having trouble typing anything intelligible on my iPad. Next thing I knew, I was dozing off and in a deep sleep, only to be woken up when a nursing assistant came by to take my blood pressure. This pattern has repeated throughout all of my treatments. I usually wake up in time for lunch right at the end of the rituximab. After that comes the cyclophosphamate, which always goes off without a hitch.

Then, I’m reminded yet again of the inherent conflict of the factors in this situation. Doxorubicin comes as a push from two very large syringes. To many cancer patients, it’s known as the “Red Devil” or the “Red Kool Aid” due to its bright red color. (As an aside, this turns your urine red for a day or two after treatment. After my first treatment, I had a minor heart attack when I used the bathroom for the first time as thought I was bleeding internally. Fortunately, I remembered it was just the “Red Devil”.) When I started chemo, several of the nurses told me that it might help to chew mint gum or suck on peppermint candies during treatment. I didn’t ask why, but I realize now that it is to avoid “tasting” the burning, metallic sensation that doxorubicin can give off in your nose and mouth. The really odd thing about doxorubicin is that my nurse has to wear a protective coat and an extra pair of gloves and puts a protective mat on my lap while she’s pushing it through my port because it can stain (not a big deal), and devilishly burn bare skin (kind of a big deal). How it doesn’t burn the inside of my body, I don’t know, but this is yet another reminder that while these drugs are miracles in a lot of ways, they also can do a lot of damage.

Once I get through the doxorubicin, it’s onto the vincristine for 20 minutes. At that point, I’m really itching to be done, but it feels like it takes forever for that last bag to empty. I pretty much stare at the IV dripping away for that whole 20 minutes knowing I am essentially home free after that. My nurse then flushes my port with heparin, another solution I can taste when it gets pushed through my port, and then it’s a race to get home before the nausea sets in.

All told, the process is about 7 hours from beginning to end, but at least I only deal with it once every three weeks. And I only have two more treatments to go!

Is that the good Hodgkin’s or the bad Hodgkin’s?

First, I just wanted to thank everyone for their support through comments on the blog and Facebook and messages/emails. I was hesitant to actually post it anywhere, so I’m excited to have such great feedback.

A lot of you expressed concern for how I’m actually feeling. I plan to write about side effects (including hair loss – the biggie!) in the near future, but I can assure everyone that I’m feeling relatively good. In fact, other than being bald, you probably wouldn’t know I was sick if you saw me in person. Except for the few days after a treatment, I don’t feel nauseous and I have a lot of great meds to help keep that all in check.

I thought it might be helpful if I shared some information about non-Hodgkin’s lymphoma and the sub-type that I have, diffuse large B cell lymphoma, before I go into too many details about my treatments and side effects. In my mind, the disease becomes less scary if you know more about it. This also gives me the opportunity to share information about my prognosis, which is quite good as far as cancer is concerned.

As an aside, this is the first time since I’ve been diagnosed that I’ve looked up specific prognosis/cure rate information for myself. Up until now, I’ve completely believed what my doctors have told me without fact checking them too much, which might be surprising to my biologist friends. While I know many of you would run to the scholarly journals, I have steered far clear of them and just placed my faith in my doctors telling me the truth as they know it to be. My rationalization for this is that it really does me no good to dig deep into the literature. I have cancer – reading tons of papers and about abnormal cases wasn’t going to cure me, but I believe being positive and putting trust in my doctors would. I did do some reading on basic websites to make sure I understood everything and I was also given tons of literature in the hospital, so that sufficed for me. To each their own, I suppose.

Warning – I’m about to go all science geeky on you. I’ve tried my best to avoid too many technical terms. Most of this info was summarized from the Leukemia and Lymphoma Society webpage, which is a great resource on blood cancers, and the Cancer Research Center of the UK, which states their information quite clearly and in an organized fashion (typical of Brits).

Cancer is basically a situation where the cells in a specific area of your body go rogue and begin to divide at an uncontrollable rate with damaged DNA. Not to scare you, but these rogue cells exist in everyone’s body all of the time. Fortunately, the human body has mechanisms to identify rogue cells and kill them but the mechanisms of identification and/or killing in specific areas can be damaged. If that system fails, your immune system should take over as a backup to isolate and kill rogue cells, but as you’ll see below, non-Hodgkin’s lymphoma is a cancer that attacks your immune system, so that was a non-starter in my case. The abnormal cells will continue to divide at an alarming rate, eventually forming a tumor and will spread to other areas of the body if not treated.

Lymphoma is a blood cancer, specifically originating in the lymphatic system, whose role is to protect against disease and infection. The lymphatic system includes lymph nodes and vessels, the spleen, bone marrow, and blood plasma among other things. The lymph nodes contain white blood cells called lymphocytes that kill diseases and infections that might enter the body. The nodes are connected to one another by lymph vessels and those lymph vessels also connect to your blood vessels. This is how lymphocytes enter the blood. There are three different kinds of lymphocytes, including B cells that produce antibodies to fight infection.

There are two main types of lymphoma – Hodgkin’s and non-Hodgkin’s (NHL). NHL is the 7th most common cancer in the USA, with aggressive (fast growing) sub-types making up 60% of all NHL cases. Diffuse large B cell, the most common form of aggressive NHL, is diagnosed in half of the NHL cases in the country, so I have a lot of company.

For those of you who are Curb Your Enthusiasm fans, you will know Hodgkin’s lymphoma as the “good Hodgkin’s” (http://youtu.be/Zd-AEkvmg54), because of its higher cure rate than non-Hodgkin’s. As you may have already sensed, Jeff and I cope with pretty much everything in our lives, especially my cancer diagnosis, using (often irreverent) humor, so when I told him the definitive diagnosis of non-Hodgkin’s lymphoma, we were both quiet for a moment and then I asked, “Is that the good Hodgkin’s or the bad Hodgkin’s?” This was one of my many times throughout this process that we both knew I was going to be just fine.

After my oncologist spoke with me about my specific diagnosis, the first question out of my mouth was, “What is the prognosis?” The prognosis for most cancers depends on a number of factors, including your age, health prior to the diagnosis, whether the tumor is localized to one area or has spread, and your stage. The diagnosis rates of NHL increase with age generally, with most patients being 55-60 or older, but my doctor informed me that diffuse large B cell lymphoma of the mediastinum (chest cavity) is one of the most common cancer diagnoses in young women between the ages of 20-40.

Fortunately, he said that diffuse large B cell lymphoma is highly curable in people of my age group and health profile when diagnosed in the early stages. I am relatively young, was in good health prior to the diagnosis, the tumor is localized to the chest cavity, and since my blood work wasn’t showing much other than usual tumor markers, he knew I was in an early stage. I had no idea that oncologists even used the word curable. I had always heard of cancer going into remission but never thought about being cured. I suppose I just thought cancer survivors lived in a permanent state of remission. (Perhaps this is because most of my family members who have had cancer either passed away from it or are living with it as a chronic condition.) “Curable” seemed like a forbidden word when talking about cancer. When my doctor said “curable”, I thought it was like the secret word in Pee Wee’s Playhouse and everyone in the oncology ward would scream if they heard someone say it.

To clarify, when you are declared cancer free after your last treatment, you are in remission. In the US, you are considered to be “cured” if you are cancer free for more than five years. I’ve read in several European studies that they measure cure rates after 3 years cancer free. Whether you’re European or American, cure rates for young women with diffuse large B cell lymphoma are 85-90%, perhaps even slightly higher depending on what studies you read, so the odds are definitely in my favor.

When I was in the ER and the resident told me that I had a 12-13cm mass in my chest, my first thought was lung cancer. Looking back on it now as a biologist, I know that was a really unlikely diagnosis since primary organ cancers are typically slow growing, while diffuse large B cell is described as fast growing and aggressive, and primary organ cancers are often detected on the millimeter (not centimeter) scale. I had an X-ray 15 months prior that showed no sign of anything, so it was unlikely that lung cancer appeared as a large tumor in less than a year. However, when you first find out you have a giant mass in your chest, logical thought flies out the window. I did know, however, that the prognosis for lung cancer is not good as in most cases when lung cancer is diagnosed, it has spread there from somewhere else. At that point, survival rates are quite low (less than 10%), and even if it was localized, survival rates are still pretty low (25% or so).

Most of the doctors told me from the start of my stay in the hospital, well before even my biopsy, that if I had a lymphoma as they strongly suspected, most are highly curable in people of my age. The news that this was likely a lymphoma of some kind, as opposed to lung cancer, was then a huge relief. It’s funny how your perspective changes quickly in situations like this.

I would like to think that my positive attitude would be the same if I had some type of primary organ cancer with a different prognosis, but I’m not going to lie – knowing that the cure rates for the type of cancer I was diagnosed with is so high makes it easier for me to be positive and full of jokes. I also refuse to believe I’m in the 10-15% of people who aren’t cured – it really hasn’t even entered my thoughts as a possibility.

And (spoiler alert!!), this whole situation has gotten a lot easier since my mid-treatment CT scan revealed that my once 12-13cm mass is now down to about 5cm. It hasn’t been easy getting there, but it could be a whole lot worse.

“I just wish it wasn’t coming out of me”

Shortly after I was given the news of the grapefruit in my chest cavity, I was admitted to the hospital and ended up staying there for about nine days, including Thanksgiving, through my diagnosis and first infusion chemotherapy treatment. Being inpatient throughout the entire process of my biopsy, diagnosis, and first treatment is quite rare. Most patients have to wait a week or two for a biopsy, another week minimum for their results, and usually another week or so for their first treatment.

Once he was assigned to my case, my oncologist calculated that my tumor grew to about 13cm in, likely, 4-6 weeks. Conservatively, it was growing at a rate of about 1/3 of a cm per day. Given that, and its location over my lung and heart, there was a possibility that it could grow so quickly that it might damage my lung and/or occlude my trachea/esophagus. My oncologist didn’t feel comfortable letting me leave the hospital knowing that was a possibility. Also, my tumor was growing so quickly that he didn’t think I could afford to wait another week or two before receiving my first treatment. Staying in the hospital meant that they could move the process along at a much faster rate.

Most of my stay was a blur of getting blood drawn, vitals taken, meeting with doctors of all types, eating mediocre food and watching a lot of TV. But, there were some notable events in terms of my diagnosis and treatment.

The first morning round: Years ago, I purposefully chose a primary care physician who was based in a university hospital. (In the future, I’m planning to write about how I think this has contributed to the successful treatment I’ve received thus far.)

As I’ve mentioned already, there are multiple levels of physicians in a university hospital, and once I was admitted, I had to become (very quickly) used to the fact that, each morning, a small army of doctors would enter my room for rounds to check in on how I was feeling, listen to my heart and lungs (or really, lung in the singular since my left lung was not inflating by that point), and let me know what the plan was for the day in terms of tests, procedures, etc.

These visits were kind of odd as typically a resident who was assigned specifically to my case would be the one to do all of the talking while the interns, med students, and other residents would stand around my bed, literally looking down on me. I never had any idea who to look at when I was answering questions since only one was doing the talking but they were all taking notes and nodding along. I felt like a bad dinner party host focusing all my attention on one guest, but eventually I got used to it. The attending who was supervising the team would often stand in the back of the group, and although I had trouble identifying him/her at first, it was good to know they were there making sure this little army didn’t go AWOL or run amok on my health.

I remember the first morning round quite clearly. The resident tentatively knocked on my door and the team entered my room. Introductions were had all around, as if I’d remember anything but the first name or two. I could tell by their body language and initial introductions that they were unsure as to how I was handling the information that a large tumor had grown in my chest over a period of a few weeks, and we didn’t yet know what it was. This was confirmed when the resident handling my case said, “We know you’re probably going to need some time to process what’s going on with your health as it must be very shocking”, with a look of genuine sympathy and concern on his face.

When I received the news the night before, I did have a bit of a breakdown when I called my husband. Mostly, I was scared for him. I knew I could handle whatever was about to come my way, but I also knew that a cancer diagnosis meant that I might die. What scared me was not that prospect, but thinking about what would happen to Jeff if I wasn’t here. My husband is more than capable of taking care of himself, and I rationally know this. But, we’ve been together for over 13 years and I imagined all the things that I do in our relationship that he would have to handle on his own. That made me really nervous, but once I heard his voice on the phone and knew he’d be with me in the hospital soon enough, I calmed down.

After I hung up the phone with him, I took about five minutes to pull myself together. I then had the clarity of thought required to realize that we needed to figure what exactly “it” was and determine a treatment plan. I made the resolution then and there that I was not going to be emotional about this situation, and more importantly, I was not going to allow myself to think that I could die. I figured that I’m young, I’m smart, and I’m tough. Whatever “it” was, it was not going take me down.

So, when the resident said I must feel like I needed some time to process things, I took control of the situation. I did not want to be handled with kid gloves and I didn’t want to prolong the process. I said, “Doctor, I’m done processing what’s going on. I took my time to do that last night in the ER. Now, I just want us all to be productive and figure out what this is so that you can develop a treatment plan and we can move forward. I promise you that I will be a stellar patient and I’ll do everything you ask, so long as I feel like we’re moving towards nailing down a diagnosis and treatment”.

The mood in the room instantly changed from one of empathy to one of understanding that i wasn’t messing around. The resident said, “Okay, then. That’s what I like to hear. Let’s talk about our plans for a biopsy so we can move forward. We need that before we can do anything else.”

While I sincerely appreciated their concern for my emotional well being, I feel strongly that by taking control of the tone of their approach to me, I kept everyone moving towards getting me diagnosed and treated as soon as possible. I didn’t need touchy feely…I needed action. That’s what would make me feel better emotionally – to know what was going on and how the team was going to handle my care. Once I had answers, I knew I would be okay.

The biopsy: The resident explained that they wanted to do my biopsy via a bronchioendoscope, which meant they would send a tube with small camera with a biopsy needle of sorts down my trachea to obtain a sample from the tumor and inspect the tumor visually. Unfortunately, this was considered a surgical procedure and they wouldn’t be able to get me scheduled for another couple of days, especially due to the Thanksgiving holiday.

I asked if there were any other options that would get the biopsy done sooner. In fact, they could do an ultrasound guided biopsy where a biopsy needle would be guided into the tumor through my chest cavity using the visual guidance of an ultrasound. This could be done that day or the next, depending on the schedule, but they warned me that this type of procedure was less accurate in terms of obtaining enough viable tissue from the tumor in order for the pathology lab to make a diagnosis. If they didn’t get enough tissue, they would have to reschedule a bronchioendoscopy and that could set us back another few days. On the other hand, that procedure would almost surely obtain enough tissue on the first shot.

I was determined to get things going as soon as possible, so I said I was willing to have the ultrasound guided biopsy, even though there was a greater chance of not obtaining enough tissue. I figured the odds were still in my favor and with the holiday coming up, I wanted the pathology lab to get my samples as soon as possible.

Sure enough, they were able to get me in that day for the procedure. I was given a mild sedative and rolled into a room with the ultrasound equipment. The resident and attending came in and introduced themselves. While they set everything up, they asked what I did for a living and I told them I was a biology lab instructor at a college and my focus was anatomy and physiology. (This generally excites doctors as I think they feel like we speak the same language.) The resident who was going to do the biopsy was standing on my left and the ultrasound screen was on a cart to my right. They numbed up my chest with lidocaine and asked me to turn my head to the right. They mentioned that I might want to close my eyes so i couldn’t see the screen.

“Are you kidding?! I definitely want to watch this”, I said. The anatomy geek in me thought seeing an ultrasound of my chest cavity was amazingly cool. The neurotic side of me thought that if the resident didn’t grab the tumor, I would want to know exactly what happened and what better way to do that then seeing the screen myself?

The resident announced that she would begin the procedure. I could feel pressure being applied to the site of needle insertion but I didn’t feel any pain. A moment or two after she started, I saw the needle on the screen aimed at a solid looking mass that appeared as she moved the ultrasound equipment over my chest cavity. It occurred to me that the mass was THE mass. It was the tumor, right there in front of my eyes.

“Is that it?” I asked the attending. “Yes, that’s the tumor right there”, he replied. I paused for a moment.

“That is absolutely amazing and cool…I just wish it wasn’t coming out of me”, I replied.

I saw the needle go into the mass and the resident said she obtained sample 1 and I saw the needle retract out of my chest. She placed the sample in a jar being held by the attending. He asked me if I wanted to see it – he told me few people ever did. Of course, I wanted to see it.

It was white, very long and thin, and floating around in some sort of fluid, maybe ethanol, in a small jar. I started at it for a second knowing that sample could be what tells all us what was growing in my chest cavity. Meanwhile, the resident went in again and obtained a second sample. The attending showed it to me, they bandaged me up and told me I might feel like I got punched in the chest the day. (I definitely did…I felt like I got walloped but good.) I was rolled out of the room into recovery and eventually brought back to my room.

The port placement procedure: The wait was on for the pathology lab to get a diagnosis. It took about two days before they were able to say that it was definitely a type of lymphoma, and a full week to obtain the final specific diagnosis that would determine my course of treatment.

The wait between day 2 and 7 was frustrating – not because I was bored or scared but just because I wanted something to happen, anything to happen to move us forward. After the Thanksgiving holiday and the weekend, my oncology team was able to schedule me for my port placement surgery.

Rather that having to place an IV in my veins each time I went in for treatment, my oncologist wanted to have a portacath, or port, placed in my chest on the right side. Here’s what one looks like:

Portacath

It’s placed under the skin and the tubing connecting to that peg off of the metal disk is fed into one of the jugular veins that connects to the right atrium of the heart. When you go in for treatment, the nurse will place a needle in the plastic septum in the circle as you see above and then your meds are given to you that way. Having one of these ports is convenient as you don’t need to be poked for an IV every time you go for treatment. Plus, you can shower/bathe easily as all of this is under the skin completely.

For this procedure, I was not placed under general anesthesia, but I was heavily sedated. Once in the surgery room, I was wrapped in sterile blankets from head to toe with only the right side of my chest exposed. I asked the nurses to prop me up a bit as they initially had me laying flat but the tumor was making it impossible for me to lay that way without coughing. The last thing I wanted was to have a coughing fit while a surgeon was making incisions near my jugular vein.

Eventually, the surgeon came into the room but I couldn’t see him because my head was wrapped up tightly in sterile blankets and turned to the left so my head wouldn’t get in his way. Since there was a huge row of monitors to my left, he couldn’t come around to that side.

He just said, “Jocelyne, I’m Dr. M and I’m going to be performing your port placement procedure. You’re going to feel a little pressure now as I’m going to begin the incision”. The nurse asked if she could give me another dose of sedative, which he agreed to, and although I felt him beginning to make the incisions needed to place the port, I quickly fell asleep.

Next thing I knew, I was being woken up by the technicians and nursing staff while I was rolled off to the recovery room and the next step in my treatment was complete.

Getting the final diagnosis: The port was placed on a Wednesday, eight days after I was admitted. We were still waiting for the final diagnosis when I returned from surgery. Around noon that day, it came in with my oncology team.

I was officially diagnosed with diffuse large B cell lymphoma, a form of non-Hodgkin’s lymphoma (NHL). Apparently, the pathologists were going back and forth between two types – diffuse large B cell and a much rarer form called Burkitt’s lymphoma. My tumor growth had really outpaced traditional markers in the blood work for diffuse large B cell but they finally came to that conclusion, which is what my oncologist suspected all along. With a diagnosis with diffuse large B cell, they typically would do a bone marrow biopsy and possibly a spinal tap to determine if the cancer had spread to the bone marrow or cerebral spinal fluid, but since an abdominal scan revealed no signs of tumors, my cancer was localized to the chest cavity (specifically the mediastinum), and the blood work showed no signs of progression, it was determined that I was in an early stage with a really aggressive tumor.

My oncologist explained that having an aggressive tumor was actually beneficial for treatment (counter-intuitive, no?). Chemotherapy is designed to destroy fast growing cells and prevent them from growing in the future. To do this, it attacks cells during their process of division. As it turns out, the more often cells divide/multiply, the more opportunities the chemo would have to attack the cells. While I would prefer to have nothing in my chest cavity except what should be there, it was good to know that this tumor’s aggression would work to my benefit.

With that, he explained that I would start my first round of chemotherapy in a few hours and they would do it in-patient so they could monitor me closely throughout the process. If I tolerated it well, they would schedule me for the remainder of my treatments in their outpatient clinic and I could probably go home the next day and that’s exactly what happened.

“It isn’t good…”

Since my last post, I’ve thought about a comment that a colleague made to me after her own battle with leukemia – nobody thinks their diagnosis “story” is as interesting as the patient does. To a degree, I think this is true and I hesitate to go into more detail, but in the off chance that it might help someone else (and mostly for my own documentation, as if I could forget any of this), I’ll continue.

The resident in my primary’s office ordered a chest X-ray. Because her office is located in the hospital complex, I knew that getting an X-ray was fairly quick and straight forward. It was still early in the afternoon, and I asked the resident if he thought I should go that day to get my X ray done or if he thought it could wait.

He said, not surprisingly, that I might as well get it while I was there. Once he got the results back, he could prescribe something to clear up the phantom congestion, or at least figure out why I’d been doing everything but hacking up a lung for the past month. But, he said it was entirely up to me – I could come back at a more convenient time if I wanted. I ended up deciding to get the X-ray since I was already there, and I thought it would be a quick in-and-out sort of thing.

I had an X-ray about 15 months prior for an unrelated issue, and in that case, the technician took the images and sent me on my way. The entire process took, maybe, 10 minutes. Here comes sign #1 that this was not going to be a normal day – after the X-ray this time, the technician asked, with a voice that was an odd combination of alarm and sickening sweetness, if I would take a seat in the waiting area as she wanted the radiologist to look over my X-ray before I left. I took a seat and waited…and waited…and waited what seemed like an hour, although I’m sure it was only 15-20 minutes.

The radiologist found me and explained that he believed my X ray showed that the upper and middle lobes of my left lung were collapsed and he had my primary doctor on the phone to talk through options. She explained that the collapse could be due to mucus blockage since I’d been coughing so much or perhaps I had the start of pneumonia. She said there was an outside chance that what the radiologist thought was a collapse was actually a growth of some kind, but she didn’t think this was likely given my health and family history. Plus, I’d just had a complete blood work up less than a month prior that came back normal. Either way, she wanted me to get a CT scan so they could get a better sense of what was going on.

However, there was a potential insurance issue (surprise, surprise). If she ordered the scan via an outpatient facility, it could take several days to get authorization, which of course, meant several days that I would still be feeling pretty crummy and not knowing what was going on. What was worse was that the insurance company could initially decline the request for the scan, citing the X-ray as the definitive diagnostic tool, even though it had raised more questions than it answered. In this case, my primary would have to write a rationalization of sorts and this could ultimately extend this whole process out to a week or more before I could get the scan…no wonder doctors are fed up with our current insurance system.

Alternatively, I could go to the ER where my primary would call ahead and ask for a CT scan. If the scan was ordered through the ER, and not an outpatient facility, it couldn’t be declined and no prior authorization would be needed. She said the decision was entirely mine as the ER trip would take a bit of time but she thought it would be the ideal option if I was up for it.

I have to say that, at this point, I still wasn’t overly concerned. I figured, at worst, I had a bad case of bronchitis, or maybe walking pneumonia. While my primary did mention the possibility of a tumor, I really didn’t think that was likely. I’m sure that lack of concern made it easier for me to go to the ER to get the CT scan. I figured whatever was going on was something that could be handled easily so there was nothing to fear, no reason not to get the scan, so off I went.

Sign #2 that things were not so simple and straightforward…upon receiving my chart from my primary and the radiologist, I was pushed through the ER about as fast as anyone in a city/university hospital could possibly be. Before I knew it, my vitals had been taken, blood and urine collected, EKG performed, and I was whisked away to a “room” and asked to get up onto a gurney.

The ER resident came in to introduce herself. When you go to a major teaching hospital, you can expect to be seen by attendings (Mom and Dad doctors), residents (young adults doctors who are somewhere between just being able to rent a car and the parent doctor stage), interns (teen doctors who still need some oversight), and med school students (baby almost-doctors). This resident reminded me a lot of my students, although she was obviously at least 5-6 years down the line.

Anyway, the ER doctor sent me on my way for a CT scan with contrast. The technician told me that they would be injecting contrast dye via my IV. He also said not to be alarmed, but the contrast would be warm and would make me feel like I had to urinate, but he assured me that I wouldn’t. I told him that me and my bladder would decide that. He was not amused.

Sign #3 that things were not too good…the tech took the CT scan and got me back on the gurney. In the room behind the scanning equipment sat several (I’m assuming) technicians and radiologists who I could see clearly through a window. I felt their gaze on me as I was being rolled back out of the room and when I met their eyelines, they quickly looked away. Not good.

I was returned to my little holding room and waited…and waited…and waited some more. At this point, I knew something more serious than I anticipated was going on. And then the answer…

The young adult doctor walked in and asked if she could turn off the TV. (Sign #4 and really just a bad sign in general. If you’re watching the TV in your hospital room and your doctor asks to turn it off when they come in, brace yourself.) She sat down in the chair next to my gurney and took a deep breath. She said words i can still hear.

“The results of your CT scan have come back, and it isn’t good.” I got the sense that this was one of the first times she had ever had to deliver this kind of news. She’d probably imagined this moment many times. I had not.

She explained that the “collapse” was not actually a collapse. Rather it was a mass that was approximately 12-13 cm in size sitting over my left lung and my heart. I asked, “12-13cm?! Do you say centimeters or millimeters?” She confirmed that I had something the size of a grapefruit in my chest cavity between my rib cage and lungs/heart. She explained that an oncologist was on the floor that night and suspected that the mass was malignant, given that just 15 months ago there was no sign of anything on my chest X-ray. She apologized for having to give me this news and not being able to tell me more at that point. There wasn’t much more she could tell me at that point, which was probably just as frustrating for her as it was for me.

She asked if I had anyone that I wanted to call. I wasn’t planning on being in the hospital for more than an hour or two that day, and some 8 hours later, my cell battery was dead, and in fact, yes, I did have some people I would need to call. She gave me her own cell phone so I didn’t need to go out into the hall to use the public phone. At that point, I made a really difficult phone call to tell my husband what was going on. After he got to me, I called my parents – although he spoke to them while he was on his way. I was eventually admitted and the process of getting a specific diagnosis began.

In retrospect, there were two points on the day that I was admitted to the hospital where things could have ended up very differently. I thank my lucky stars every day that I decided to just go get the X-ray, even though it was a seemingly minor inconvenience. I could have easily walked out the door of my doctor’s office and gone on about my day with the intention of coming back that might have gone unfulfilled.

Above all else, I’m beyond thankful that my primary doctor encouraged me to get the CT scan in the ER. I’m thankful she thought through potential insurance issues while also keeping my health and well being at the forefront of her concern. Everyone should be so lucky.