All Quiet on the Cancer Front

Recently my world has been touched by death. Lots of death. Since early January two friends have lost their husbands through unusual circumstances. One of these deaths remains unexplained and the other happened because of a horrible mix of black ice and bad timing. I find it nearly impossible to know how to comfort a young widow other than to hug her and let her know I care. Sudden and unexpected death reminds me how lucky I am that despite having cancer there is every reason to believe I have lots of time left on this planet.

Last week my uncle died after living with dementia for many years. He was an intellectual and if given the choice probably would have chosen amputation of a body part over losing his brilliant mind. Our relationship was, shall we say, complex. The relief over the end of his suffering is melded with a lifetime of guilt and other family weirdness so letting go of my uncle was difficult for me. For all of us.

Finally, one of my mother’s lifelong friends died in her sleep. She was one of those people who was part of the community who raised me. My memories of her include riding in her old Model T Ford which had holes in the floor so we watched the pavement go by as a gaggle of kids bounced around in the back seat. That ancient car was an oddity in our suburban neighborhood and it was just one of the quirky ways in which this dear lady let us know it was ok to be different. Without trying to she taught me being true to your own vision is the gold standard of living an authentic life.

January has been hard.


My Lymphoma has been very well-behaved since I had treatment in April. I continue to have Rituxan infusions every other month which I tolerate fairly easily. The Hospital Infusion Center got a major remodeling, which makes a huge difference for patients. The chairs are new and comfy. There is a lot of space so we have privacy unlike the old room where we all got to hear the intimate personal and medical details of our neighbor’s lives. There are windows with natural light and there are even vegetarian choices on the menu.

IVs remain a challenge because my veins do not like to cooperate. I drink lots of water before the infusions to try to give the nurses something to work with when they insert the IV. Some months it goes well. Other months the bruises make it look like I look like I got into a fight. Fun with needles is just part of this effort to stay healthy and alive. It is an inconvenience more than anything.

I will probably continue Rituxan infusions as long as my insurance company cooperates. The standard protocol is 2 years of “maintenance” every other month but some practitioners extend this course of treatment. Others say maintenance does produce a stronger remission but does not extend life. The research is unclear in part because life expectancy is extended so long not enough people have died for studies to be conclusive.This is the kind of uncertainty that makes someone like me happy. For now, we will continue Rituxan every other month until a conclusive study suggests we stop or try another therapy. That is, unless the insurance company cuts me off, which is a possibility.

For now, my blood counts are better than they have been in my adult life, I have no fatigue and there are no visible nodes. I can live with that.

Why pink ribbons made me cranky and a personal request for help

I was at the grocery store yesterday and a sweet lady was sitting at a table just outside the entrance. She had set up pink balloons all over the place and the table was covered with glittery pink ribbons and literature about breast cancer. She had one of those huge tubs you buy at cost Costco filled with salty snacks and instead of pretzels it was partly filled with dollar bills. She greeted me with a huge smile as I walked by and asked me if I would like to contribute to ending Breast Cancer. I suppose I embody the demographic who cares deeply about breast cancer, being that I probably have some risk for getting breast cancer because, you know, I have breasts. I smiled politely and said no thank you but inside my head I was bitching. I admit it. I was bitching.

Why does Breast Cancer get all the press? Why does everyone immediately know what that pink ribbon means? Breast cancer has the best organized, most successful anti cancer campaign around. Well that is until the ALS ice bucket challenge came along. I believe those Facebook videos and the philanthropy they inspired have raised something like $90 million dollars. Amazing what people can do when they band together, isn’t it?

Part of me gets cranky because why the hell should I give money to a pink ribbon campaign when I have lymphoma. Did you know our ribbon is lime green? Now I have to say whoever thought lime green was a good color to get people to rally should be fired. It just isn’t a color that inspires, is it? The Lymphoma color choice does annoy me but that is petty. What really gets me cranky is people have to choose. Most of us have limited resources and can’t give to every cause that moves us so we pick.  Diseases that have good marketing campaigns get more money than diseases without successful fundraising campaigns. What happens to the people who have obscure diseases with no fundraisers at all? Do they get a cure? How do big pharma and the NIH decide which diseases to study and develop treatments for anyway? In the end those dollars in the plastic tub and the studies funded by the NIH and big pharma contribute to who lives and who dies. That is the hard truth of it.

That poor woman was just doing some community service outside a grocery store. She had no idea what was going on inside my head and that is probably a good thing.

Having said all of that my sister is participating in The Leukemia & Lymphoma Society (LLS)  Light the Night walk in Boston. She is raising money to help fight the disease I have and I could not be more humbled or proud. If you have any money left over after you have supported Breast Cancer, ALS, and all of the other worthwhile charities and causes that are deserving of our help, please consider helping my sister meet her fundraising goal.  I appreciate anything you can do and I thank you, and my dear sister, from the bottom of my heart.

Welcome to my Light The Night Walk Fundraising Page

We are living in an extraordinary moment. The Leukemia & Lymphoma Society (LLS) is on the brink of incredible breakthroughs that have already begun to change the lives of thousands of patients; treatments that can manage a person’s condition with a daily pill, therapies that seek out cancer cells and kill them, and the use of a patient’s own immune system to eradicate cancer not someday, but today.

The Leukemia & Lymphoma Society’s Light The Night Walk funds those treatments.

Please make a donation and check my Web site frequently to see my progress. Thanks for your support!



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.