Rituxan Infusion #1 – Maybe Not the Most Fun 8 Hours of My Life

The Infusion Center is painted blue which I guess someone thought would be calming, but they got the shade wrong. It is more the blue of the bottom of a public swimming pool than the pale blue sky color of a summer day. This is the kind of thing I had time to think about while I was confined to the uncomfortable recliner with a needle in my arm. We arrived at the Hospital at about 7:45 and we finally left at about 4:15. It was a long and entirely exhausting day.

From my vantage point right next to the nurses station I got to observe how infusions work. It seems like the patient has to sit in the recliner for a half hour while medical staff run around doing important things. Why these important things, like searching for pieces of paper, can’t be done before the patient arrives is a question I dared not ask. These people are going to be sticking me with needles forever so I don’t want to be the questioning complaining patient. Anyway, after the half hour of doing nothing the patient gets a hospital bracelet and the nurse asks a whole host of questions all of which are answered in the medical chart they have in front of them on the screen. They need to confirm that you are not trying to sneak in and get an illegal infusion of chemotherapy?  I don’t know.

The nurse pokes and pats the patients arm looking for a “good vein” which can be a chore for people like me who have “crap veins” which is a medical term of art. It means my veins are deep and small and they like to roll away when someone attempts to stick them with a needle. Most every time I have to get an IV it is an adventure that ends with me being black and blue and a needle stuck in a place that makes it nearly impossible for me to use one arm. Thankfully the nurses at the Infusion Center are really great at finding a vein and my Nurse Kris got it in one try. Thank you Kris. I think I love you!

Eventually your medicine arrives and two nurses have to read a bunch of numbers to each other – serial numbers, stock numbers, possibly lottery numbers. I don’t know. Eventually everyone is satisfied you are indeed who you say you are and the chemo in a bag is the right poison cocktail for you and the infusion begins. Your chemo is attached to a pump which is programmed to drip the liquid into you at just the right rate. Rituxan is known for producing “reactions” in 90% of people according to Kris so they start the drip very slowly. We began at 50 ml/hour. Considering the dose is 750 ml I was a bit worried I would see Kris go home and meet the night nurse before I was done.  After a while we upped the drip to 100 ml/hour.

After about an hour we went to 150 ml/hour and the fun began. At first it felt like the scratchy throat you experience when you have a cold. Then I was coughing non stop. Pretty soon the wheezing and closing throat happened and I got scared. Luckily when we went back to 50 ml/hour the reaction stopped. We got back up to 100 but when they asked me if I wanted to go faster I politely declined. I was afraid I would stop breathing entirely.  I am told Rituxan gets easier to infuse each time so hopefully I won’t have any reaction next week.

Under the heading of things no one tells you about the Infusion Center — everyone has a personal TV which is cool except for the fact that no one uses headphones. So there can be as many as 4 different shows playing within 5 feet and everyone turns the volume up to drown out their neighbor’s TV. Add the loud talker who was reading USA today to her hard of hearing mother and the noise level was just incredible. I will purchase some noise cancelling headphones this week so I don’t have to tearfully ask the Nurse to speak to my neighbors about turning the TVs down. I do not deal well with unnecessary noise at the best of times. Hour 6 of an 8 hour infusion does not meet the definition of “the best of times.”

I still have lumps in my neck this morning. I don’t know why I hoped they would be gone. Lymphoma is the land of magical thinking.

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It’s……Showtime…..

As I was driving home the other night Dr. K called me. My phone is connected to my car so I enjoyed the surreal experience of driving down the Parkway talking to my oncologist about bone marrow, lymphocytes, Clinical Trials and a miracle drug called Rituxan.

For the next 4 Fridays I will sit in an infusion chair at the hospital and have Rituxan dripped into my veins, one drop at a time. The first infusion is expected to take 5 hours, which I know means somewhere between 6 and 7 hours because that is how things go with hospitals and doctors. I will also get a large dose of Benedryl to fend off an allergic reaction and possibly some Ativan to keep away the crazy. After the initial 4 doses of Rituxan I will be given “maintenance” infusions every other month for a long time. A “long time” is defined as somewhere between 2 years and forever.

While I wish I could continue to ignore my Lymphoma, I knew the day would come where we had to do something. The treatment Dr.K and Dr. Leonard decided on is the least toxic, most simple approach available. They did discuss enrolling me in a Clinical Trial which is testing some cutting edge drugs and I would have been happy to participate. However, my disease is not severe enough yet and they didn’t think it was time to subject me to more drugs than necessary. Since fNHL always relapses we really do want to save the “big guns” for later when we might need them. I love that Dr. K consulted with Dr. Leonard without me asking her to do so. She is such a great doctor.

I am ok with moving into treatment. I am told the side effects of Rituxan are minimal. It is like having the flu for a day or two. No throwing up, no hair loss, none of the indignities we are used to seeing people with cancer manage. This treatment is not considered chemotherapy at all, in fact.

Rituxan is a monoclonal antibody which encourages the person’s own immune system to kill off cancer cells. I am doing some reading about how and why Rituxan works. I never thought I would be reading medical journals as part of my leisure time but there you have it.  Here is a pretty good, easy to understand description of how Rituxan works for anyone who is interested.  This drug is the reason the survival of Lymphoma patients has gone from 10 years on average to double or triple that amount of time. Since Ritxuan has only been used for about 10 years there are no definitive studies about survival rates because people keep living. There hasn’t been enough time for the science to become clear.  What is clear is Rituxan has improved treatment dramatically and people are living much much longer.

I am nervous about this next step for silly reasons and for at least one or two serious possible complications. Sitting in a chair for a full day? Ugh. Nicholas is coming with me but I know he hates spending time in hospitals more than he hates sitting around doing nothing. I need him to do both. For me. I hate needing people to do things for me. Eating hospital food? Not happening. I am totally brown bagging it!

The real worry is what happens if Rituxan doesn’t work for me? What if I am allergic to it like I am to most other drugs. If I am allergic they might just dose me with Prednisone and pump me full of Rituxan anyway, which has a whole host of other lovely side effects. But if I do have a serious reaction and I can’t take the “miracle drug” what happens?  What if I can take Rituxan just fine but I am one of the few who’s disease does not respond to the drug. What then? I guess we move on to chemo at some point and I really do not even want to contemplate that right now.

So many things to worry about.

When I am done making myself nuts I put one foot in front of the other, look forward to going to the beach over Memorial Day weekend and figure these next few appointments are just more bumps along the road.  It is going to be fine.

Mostly Clear on the PET/CT Front

Tuesday I had a bone marrow biopsy. You DO NOT WANT this procedure. You must trust me on this.

I had talked to people who experienced BMBs and I knew it can be extremely painful. Usually knowing what is going to happen helps but this time I think I made myself just a little crazy.  By the time Dr K walked in the exam room I was already crying.  And by this I mean uncontrollable waterworks, coupled with chest heaving and sobs. I was ridiculous. I honestly was embarrassed to be me in that moment. I was all at once looking down on myself and thinking “get it together woman” and crying like an infant.  It was not my best moment, to be sure.

Dr K walks in the exam room and hugs me. Hard. For a long time. Then she walks through basic relaxation techniques. “Take a deep breath.”  “Close your eyes.”  “Relax your arms.”  The whole time she is massaging my shoulders and talking really softly.  This woman has amazing bedside manner and I am so very lucky to have her as my Doctor.  Cancer is such a beast and it helps enormously to have a Doctor who is kind, compassionate and totally up to date on the latest science.

Finally I am calm(er) and the fun begins! I am face down on the exam table and after poking around for a bit, Dr. K decides my right hip bone is the perfect place to harvest some marrow and bone. First she shoots about a gallon of Lidocaine into my flesh and we wait for it to numb me. I am happy for this pain relief but I know there is no possible way to numb bone. It just can’t be done, which is why they use general anesthesia when a BMB is done on a child. Why the medical community thinks we adults should just suck it up is beyond me.

Eventually Dr K screws a hollow metal rod into my hip bone. In my mind it was about the size of the pipes under the kitchen sink but in reality it was pretty small.  The feeling of someone twisting a long thin screw into your body is pretty weird. There were intermittent sharp, shooting pains but mostly there was a lot of pressure. Then she inserted a syringe into the hollow metal rod to “extract” marrow. Except my marrow was quite comfortable inside my hip bone and had no intention of coming out. She had to dig around a bit which was, shall we say, about as painful as dental work and pushing out a 7lb baby all at the same time.  No.Just no. Do.not.want.ever.again.

Finally she got the samples she needed and I was done. On her way out the door Dr. K says ” no bath or shower for 48 hours.”  WHAT?  All I wanted was a long hot bath. But, as she reminded me, I had a hole in my back leading directly to the interior of my bones and water is full of bacteria that would love to colonize. So, no shower. No calming hot bath. Sigh.

Thursday I had a PET/CT scan, which by comparison was a walk in the park. They gave me Valium so I was relaxed and inside in a tubular machine for 45 minutes. No big deal.

Late that afternoon Dr. K called to say many of my nodes have shrunk! There is no bulky disease and while I do have 2 nodes that are visible on my neck, we knew about those and for the most part I am stable. We were both somewhat shocked by this result since my blood counts have dropped. We expected to see a progression of my Lymphoma meaning more tumors or bigger tumors. Shrinking tumors was certainly not what we anticipated, but I am not complaining.

Now we wait for the BMB results which will give us all kinds of geeky genetic and flow cytometry data. It is kind of cool to know your own body on a cellular level. I mean that! It is. It will probably be another week for the BMB results. Science takes time, people.

Once we have all the data we will develop a plan. It might be more watching and waiting. It might be participation in a Clinical Trial at Weil Cornell Medical School. It might be taking some new drugs.  All of these options are good.

I can breathe again.

The weirdness of knowing things you don’t know

I believe I knew I had Lymphoma long before Dr. Roffman confirmed my diagnosis. I wanted to believe I was safely inside the 95% chance he gave me that everything was fine. But somewhere deep in my heart I knew I was in the 5%. I can’t explain how, I just knew.

In December a tiny node on the side of my jaw suddenly got bigger and I had a weird bump on the top of my head. Again that “I know” feeling was in the back of my mind. But Dr. K said my blood work was stable and I still didn’t have B symptoms such as night sweats, fevers, itching so she decided to put off scans and see me in March.  Maybe I didn’t know? I sure felt like I knew something was happening.

I had a random hallway conversation with someone at work a few days before my most recent appointment. She has lymphoma and has been through treatment so sometimes we talk.  I asked her what factors led to her decision to move from watch and wait to active treatment.  Was it a change in her nodes? Other symptoms?  She told me they decided to treat when her blood counts dropped. Something about the conversation spooked me. I had the same “I know” feeling but I brushed it off as my normal pre appointment anxiety.

You know what is next right? Last Wednesday Dr K told me my blood counts dropped. My iron is below normal and to my surprise my platelets are in the normal range. For most people this is a good thing but for me? Normal means I had a fairly significant drop in my platelet count over a 3 month period. These are most assuredly not good test results. Not good at all.

So, next week I will finally have the bone marrow biopsy I have been dreading for years. I can’t even describe how panicked I am about the test. But it must be done and so I am going to put on my big girl panties and quit whining.  I am also going to have a PET/CT which is annoying and long but at least I will be drugged so I won’t feel anxious.

Nicholas has a planned trip to see his dad in England next week so I am making my way to these appointments on my own. Nicholas keeps saying he will stay home but I can’t ask him to do that. These are tests. I am strong. And, in the end we all do this shit on our own anyway. Even if someone is there holding your hand cancer feels like a solo activity.

Second Opinion, Same as the First Opinion

I exhausted but I know there are people who are anxiously waiting for an update about my appointment.  I have quite a bit to say but for right now I have just about enough mental energy to update quickly before I take a long hot bath and fall into bed.

Dr. Leonard is wonderful.  He is a teacher in the way that you wish every doctor was a teacher.  He patiently explained to me what the type of lymphoma I have means, how it will affect my life and how he will help me over time.  He was genuinely warm and caring and somehow managed to explain the basics of my disease with enough enthusiasm and empathy that it almost didn’t seem as if he had explained it hundreds of times this week alone.

Dr. Leonard confirmed that I have low-grade, indolent lymphoma.  He asked me to think about it as a hitchhiker in the car I am driving through my life.  Most of the time this hitchhiker will sit quietly in the back seat. Occasionally, he will become badly behaved and fiddle with the radio. When this hitchhiker decides he gets to control the tunes we will take action to push him to the back seat again.  Dr Leonard repeated the standard phrase I have heard many times now — “You will die with Lymphoma, you will not die from Lymphoma.”

We talked about how we will make the decision to treat this illness.  He said there are three outcomes he uses when deciding to treat an illness.  1) To cure the disease 2) to make the patient feel better and 3) to help the patient live longer.  Since follicular lymphoma is not considered curable that outcome is off the table.  I do not have any symptoms and feel just fine so that is also a non starter.  Interestingly, longitudinal studies that compare patients who are treated early with patients who wait to treat until they have symptoms show there is no clinical advantage to early treatment of follicular lymphoma.  Dr. Leonard said while it is impossible to tell, in all probability I would continue to need no treatment for a few years.  If my nodes start to grow or if I start to have classic lymphoma symptoms then we would move to treatment.

What treatment would we do?  This is where the conversation got even more interesting.  Dr. Leonard told me he believes it is his job to work to eliminate the use of chemotherapy for treating lymphoma. He said there are numerous other drugs available to us and new drugs in development that are promising.  He said he would love to get me enrolled in a cutting edge clinical trial when the time was right.  For now they enrolled me in a study that involves them banking some of my blood for analysis at a later date coupled with surveys every 6 months over the next three years.  I am excited to help the researchers learn more about how to treat lymphoma better.

Dr. Leonard did give me a parting gift!  In addition to several books about lymphoma he told me that I do not need to have a bone marrow biopsy at this time!  He said he would probably order one when I need treatment but at this time he thinks I do not need to have needles poked into my bones.  What a relief!

I plan to continue to see my local oncologist because I trust her and her office is calm.  Dr. Leonard’s practice is an hour from home and the office itself is crowded and slightly chaotic.   I am thrilled to have added the wonderful Dr. Leonard to my team.  He is more than willing to consult with my oncologist and answer my emails and phone calls.

I am too tired to proof read this so please excuse the typos and random bits of unintelligible text.

Anticipating a Second Opinion – What to ask the Doctor about Follicular Non Hodgkins Lymphoma

My second opinion appointment with Dr John Leonard, the Lymphoma rock star oncologist, is on Tuesday.  For a long time I was looking forward to meeting him and hearing what he has to say about my illness.  I am well-educated at this point and unless there are surprises lurking in my blood chemistry which my team missed, I have a good sense of what Dr Leonard will say.  I think.  Maybe.  I hope.

I am starting to get really anxious.

Yesterday, I asked Nicholas what questions he had for Dr. Leonard.  He said he wants to ask what my prognosis is and what we need to do to keep me alive.

Um. Right.

I  spend a good amount of mental energy pushing away thoughts of “what if?” and “what will happen?” and “I don’t want to die.”  It isn’t that I believe a good attitude will keep me healthy, although “everyone” says you have to “want to win” and “fight.” Did you ever notice when we talk about cancer we use all kinds of war/sports metaphor?  Its weird.

I maintain a positive attitude because it helps me forget I have cancer.   Denial is more than a river in Egypt my friends.

I want to talk to Dr Leonard about a treatment plan. I want to discuss interesting new treatment possibilities like Radioimunotherapy. I want to talk to him about the possibility of participating in a Clinical Trial. I want to talk about the many, many treatment options available to us and I want to talk about the timing of beginning to do something about the beast lymphoma.

I don’t want to talk about my own mortality.  I don’t plan on dying any time soon.

Let the games begin! Its time for a bone marrow biopsy

Last night I had a bad case of  “I don’t want to go to the oncologist tomorrow.”

I remain blissfully asymptomatic and feel as physically fine as I did before my diagnosis. That is to say I should exercise and I should lose 30 pounds or so.

But now, every time I notice a bruise or feel an ache or sneeze I have to decide if this is a normal bruise or ache or sneeze or if it is cancer breathing down my neck.   Most of the time I ignore those nagging fears but doctor’s appointments force me to remember I am a cancer patient and not just a middle-aged mom of two.

My appointment today was fine.  My blood counts look good and my oncologist said my lymph nodes seems stable. The plan is to go see Dr. John Leonard next week for a second opinion.  His office is looking at my pathology slides and will do a complete review of my medical records.  Unless there is major disagreement with my Oncologist, we will  do a CT scan in January to see if my nodes have changed.  At that time we will make a determination about what to do next.

Because this journey is SO MUCH FUN, my sweet doctor had to throw one little treat into the mix because what would an oncologist visit be without more tests or medicines?  She wants to do a bone marrow biopsy to see if the lymphoma has spread to my bones.   I have talked to people who have had this procedure.  It has been described as “not that bad” and “really, really fucking painful.”

“Great!  Looking forward to my bone marrow biopsy” said nobody, ever.

The thing is, it doesn’t matter too much if the lymphoma has spread to my bones. The treatment remains the same and the disease responds well to treatment even if it has spread.  It would be hard to imagine lymphoma not spreading as the cancer cells exist in the blood stream, which is after all the highway system of our bodies.  I expect lymphoma in my bone marrow — the question is how much?  I guess if my bones are full of lymphoma I may move to treatment and end this frustrating watch and wait.

It is really weird to have cancer and know it could be growing. Maybe my disease is stable and not progressing. If so, I don’t need treatment yet.  At the first sign of progressing disease I promise will be taking action.

I don’t care what poison I have to ingest I am coming after you lymphoma.