Back to the new normal. The first few days post chemo

When I was first diagnosed I took a lot of comfort in the fact that my medical team didn’t think it was necessary to treat me.  How bad can cancer be if the Doctor just wants to take blood every couple of months? It was easy for me to think everything was fine and this little touch of Lymphoma was nothing to worry about.  I still feel that way even after a month of chemo, but I know it isn’t true.

I participate in a forum for people with various forms of Lymphoma. Recently a lot of people over there have gotten very sick. A few have died. These deaths snap me back to reality. While I may have a lazy cancer, it is still cancer. With any luck, I will live a long life and be relatively healthy. I can look forward to more infusions, more chemo, more side effects. These things are tradeoffs that seem well worth it when I read notices about people declining rapidly, dying suddenly.

Ugh. This was supposed to be a “I am so happy treatment is over for now and I feel great post.”

The reality is I have been away from the gym for 6 weeks and I feel sluggish. I was not up to working out or maybe I just gave in to my own lazy side while I was being pumped full of medicines (aka poison.)  It is time to put my headphones on and hit the gym.  My trainer has texted me a few times to see how I am feeling. I said I felt fine but we all know that is a euphemism for kind of crappy. I know I will feel more energetic after I force myself to get up and move.  A body in motion stays in motion. It is the law.

Yesterday we spent a few hours clearing out the gardens by the pool. My job was to cut back the vines that climb over the fence from the woods and use our carefully planted beds as a home. The vines were wrapped around my father’s transplanted rose-bush and the tall birch trees we planted as sticks so many years ago.  Last  spring we missed the annual pruning of the vines and with 2 years to grow they got huge and the roots were so thick  it took an effort to hack them back.  This morning I have scratches on the back of my hands in addition to the purple and yellow fading welt from the Rituxan IV. As I put cream on my beat up hands I laughed at the ironic evidence of me cutting back the parasites so they can’t take over what matters most.

Yes, I just compared cancer to the overgrown vines in my garden, Sorry for the lame analogy but sometimes life hands you these things.

 

 

Interesting Post Titles Are The Hardest Part. Insomnia?

Yesterday I had the last of 4 Rituxan infusions. I was in and out of the infusion center in three hours. I slept nearly the whole time.  I tell you what – IV benadryl is the cure for insomnia.

Speaking of insomnia, the sleeplessness that comes with this treatment is different than the garden variety insomnia I have lived with beginning when I first got pregnant with Sophie 18 years ago. This insomnia is insistent and strong. It is like the last few days before a big deadline where you are pushing hard and you think you might not make it but eventually everything comes together.  I don’t really know where that comparison came from by this is my brain on Rituxan. I am just going with it. The point is this insomnia is like nothing I have ever experienced before. I need to sleep desperately but I am as awake at 2am as I am at noon. Just when I think I might fall asleep the cat jumps on the bed or Nicholas shifts slightly in his sleep or the breeze blows softly in the trees outside my window and I am awake for hours.  I must be getting some sleep since I am still standing but it sure feels like I have not slept at all.  My head is raging this morning.  For the first time in 18 years I think it is time to ask my Dr for drugs.

After the infusion yesterday I have some advice for nurses everywhere. If you decide to put an IV in a spot you know hurts, you might want to think again.  Patients, if the nurse says “this is going to hurt” right before they stick you the appropriate response is not “please don’t say that,” which is what I said. I should have asked him to find a different vein.  He chose a big popping vein on my wrist and I had to keep my arm perfectly level during the three hour infusion. This was inconvenient but not awful.  What turned out to be awful was the huge purple, throbbing swollen lump on my arm last night. Now it is a smaller purple lump and it only hurts if I touch it but still.  Why did he pick that vein? Why did I allow it?  Honestly, I need to stop being a “good patient” and speak up for myself.

Right now I feel tired, my head is throbbing, my arm hurts and I have no energy. Having said all of that I am happy I had the treatment. All of the nodes I could feel a month ago have disappeared. I am looking forward to Friday when I have a follow up visit with my Oncologist. I want to know what my blood counts are now. I expect I will be monitored closely over the next few weeks. I don’t know if she will order a PET scan but I sort of hope she wants to do the test.  There is a risk involved due to the exposure to radioactive isotopes but I have enough “scientist” in me to really want to see the after pictures so we can compare to the pre treatment scans.

I want to thank all of you for being here with me. I am grateful for the love I feel from all of you. I have been really tired and not been as good as I should be about sending thank you notes for all the kind things everyone has done and for that I apologize. Your kindness means the world to me.

 

So this is what it feels like? Do.Not.Like.

The most bothersome side effects of the Ritxuan treatment are things I did not expect. I spent the weekend either staring into space, completely empty of thought or feeling overwhelmed by emotion about things I normally would not even notice.  

I feel stupid. I feel overly emotional.  These are not ways would typically describe myself and I do not like it one bit.

One more week to go and then hopefully my brain will be my own again. 

 

So How is the Chemo Going, Anyway?

I had Chemo #2 on Friday. My bag was packed with fruit, hummus, veggies, hard candies in case my throat got scratchy again, a book loaded on my tablet, Pandora on my phone with my favorite stations at the ready and the all important noise blocking headphones. I figured it was going to be another long day and I tried to anticipate ways to make the infusion more tolerable.

When we arrived I headed straight for the small back room with the comfy chairs. Newbies to chemo might not know about this tucked away corner of quiet but with one treatment under my belt and 8 hours to watch how experienced people do this, I knew.

As the young pregnant nurse was inserting my IV she told me her nickname used to be “The Butcher” because in the past she did not have the coordination to take the tourniquet off quickly after inserting the needle. This rookie mistake can cause blood to shoot all over the place. I do admire her honesty but someone in her chain of command ought to explain the affectionate nickname bestowed by the other nurses is not something to tell a patient as you are inserting a catheter into their arm. I am pretty used to getting stuck by now and I am no wimp but her nickname did nothing for my stress levels, despite her super cute pregnant belly and gleeful anticipation of being a mom.

This week I got Benadryl in my IV because of the reaction I had last week to Rituxan. You know that groggy fuzzy feeling you get from Benadryl? Imagine that feeling coming on fast and about 10x more intensely. That is Benadryl in your IV.  Wowza. Naptime here I come.

The Rituxan came. The nurses went through the number reading ritual. I was off to the races. We started slowly again just to be sure. Before I realized it my drip was up to 450ml/hour.  I was infused in three hours!

I barely had time to argue with the sweet but whiny lady next to me. She insisted God would heal us all. I asked her why God gave us cancer, because I really just could not help myself. Her answer? God didn’t give us cancer. The world gave us cancer.  I chose to nod and smile. Cancer is fucking scary and people find comfort in different ways. I don’t think God, if there even is a God, is going to cure my cancer. I got cancer due to some random genetic mistake. I won’t be cured but smart scientists have developed treatments that will help me live as long as possible. Thank you science. Thank you NIH.

Her partner spent about one hour insisting cannabis oil and a hyperbaric chamber could heal us and the medical establishment was holding out on these inexpensive life saving treatments so they can make money from cancer patients. This is a line of reasoning I have read a lot, typically from alternative healing websites that are trying to sell people treatments. All irony aside, I just don’t think the Infusion Center is the place for that conversation. I absolutely believe alternative treatments can support clinical medicine. I have seen an acupuncturist and I would not turn down medical marijuana. In fact, I look forward to the day when I can go to the local shop and purchase edibles to deal with the stress, anxiety, and pain of cancer. Since I live in NY I have to wait a while, but you go Andrew Cuomo!

I was home by noon and crawled straight into bed. I have spent the weekend resting at home. I can’t tell if I really feel yucky or if I am just babying myself because…cancer. Either way, I have been reading a lot and examining my neck in the mirror at regular intervals. My largest nodes have shrunk dramatically.

The treatment is clearly working.

 

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.