Deborah’s Story

Site created on March 23, 2022


Hi Folks!  Welcome to the community.  I will try to update this page regularly so that whoever wants to be in the loop - can be.  Here's the history:  I was diagnosed with marginal zone lymphoma in 2014.  It was explained to me that it was chronic, that it would need to be treated every now and then (sort of like beating back the weeds in your yard), and that I was more likely to die from a bus running me over than from the lymphoma.  It needed treatment (finally) in 2020, which was delayed due to Covid.  I began treatment in April 2021 ( B & R, for you medical nerds).  After four rounds, all cancer had disappeared from my body except for one "hot spot."  It took open abdominal surgery in November 2021 to determine that the original lymphoma had "morphed" into another type of lymphoma - Diffuse Large B Cell Lymphoma.  It is much more aggressive.  I had four rounds of a different chemo (R-CHOP) from December 2021  through March 2nd of this year, only to discover that the chemo kept the "hot spot" from growing - but it did not shrink it.  This is disheartening, as the second round of chemo I had usually takes care of things in 90% of the cases.  And that leads us up to the present moment.

Here's my next step: I will have a 4 week regimen of chemo.  It was unfortunately put on hold for two weeks, as I broke out with a small case of shingles (not to worry - it was not painful - only a little itchy.  Antivirals helped them heal).  I will be admitted to the hospital tomorrow night, April 10th, for the first of a 4-week regimen that looks like this:
         Week 1: 5-day in-hospital stay where I will receive a different set of medication/drugs each day.  Day 2 will be my hardest, as there will be 3 types of chemo, with one of them having what I am calling a "side-kick-med."  The side-kick-med reduces the toxicity of the one chemo.  How the heck they balance that out, I'll never know.  Day 3 there will be one chemo, Day 4 they will monitor me, and Day 5 I get an injection that will stimulate my white blood cells to grow back.  My immune system will be extremely depressed.  The only good thing I can think of is that I am well-practiced in isolation measures, given Covid. ;-) 
        Week 2: I will receive one infusion of monoclonal antibodies
        Week 3:  Again - 1 infusion of monoclonal antibodies
        Week 4:  Rest Week
        Week 5: repeat weeks 1 through 4 - and then get a PET/CT scan to determine progress. 
        Week 9: repeat weeks 1 through 4, if necessary.
Here's the hard part - and I just learned it today: this treatment has a 50% response rate. 

I have discovered intravenous Vitamin C, for which I pay out of pocket.  It has just about eradicated a cough that I've had since last June that started after my 3rd week of the first round of chemo.  I am still locating a doctor with whom I am comfortable and who does not charge me through the nose.   At the moment, if I can continue to work a little bit, I foresee this as being my greatest expense.  My insurance is good so far, but it does not cover alternative treatments such as intravenous Vitamin C, acupuncture, etc. If I cannot work - well, more will be needed in the way of food and shelter. ;-)

I am aware that I am not well-practiced in asking for help or in asking for what I want or need.  I have taken care of myself for so long - and with decent results - that I have forgotten what I might even ask for or how to do it.  I will do my best, though, to ask and be specific.   I welcome phone calls, cards, and visitors - please reach out and I will tell you if I am up  for talking or visiting.  If I say no - please don't be offended.  On the other hand, I may reach out to you if you are already in my address book.  I can say this: I don't respond well to hovering.  What works best for me is someone who can be present  - who is willing to rub my feet, hold my hand or simply bear witness - without having a stake in the matter.  And, as I think about it, I may need better food while I am in the hospital.   I've not been in many hospitals - but not one of them has had decent food.    ;-)

Things will become more clear as way opens. Julian of Norwich, a great mystic, said that "All shall be well, all shall be well, and all manner of things shall be well."  I have to believe this.  Another friend offered, "Everything is working out for my highest good.  I am safe."  May each and every one of us find truth in these statements.

Thanks for reading...and thanks for tuning in.  The first entry will commence tomorrow evening, after I am tucked away in my space at the hospital. 

Love,

Deborah 



PS - Address: 132 N. Broadway, Tarrytown, NY, 10591


 

Newest Update

Journal entry by Deborah Dougherty

I have a friend who was talking about a trip she was going to take with friends, and about how she was going to navigate personal boundaries during the trip.  She called it "Swimming in the Boundary Waters" - which is a play on words, as we are only about 10 hours from the Boundary Waters Canoe Area Wilderness, which connects to the Canadian Voyageurs National Park.  Lots of space for paddling.  Well - one thing led to another.  Now, whenever we are chatting and any sort of issue comes up where personal boundaries might be an issue, we don't use our words.  Instead, we pretend to be paddling a canoe.  And then we start laughing out loud.  (We are both easily amused. 😁)

So here I sit, in a house situated in La Crosse, WI, that I have loved - and still do love, for that matter.  It is small: less than 735 square feet.  The lot is only 40 feet across - not even wide enough to raise a couple of chickens, given "20 feet from all property lines" city ordinance.  My chickens would have to run up and down the very middle of the yard - and even then would probably be breaking the ordinance by about a foot on either side.  It takes only about 30 minutes to mow the lawn - and that's with numerous empty-ings of the mulch attachment.  It is nestled in a small neighborhood which is composed of 3-4 long blocks.   The 3-4 streets that make up the neighborhood all come off one street, and dead end at the in-city marsh.  I can walk from my neighborhood under a tunnel that goes under a major thoroughfare (Route 16), and I can arrive at Hixon Forest, a park nestled up on the bluffs with plenty of trails for walkers and bike riders, in about 20 minutes.  (Well, didn't expect all of that description to come pouring out - but will trust that it's supposed to be here, as I'm not led to delete it .  I still love this house and its location, obviously. 😉)

My ex-partner rents the house from me, and Maya, my daughter, now lives here with her dad.  With her part-time job at a Fine Arts organization recently turning into full time, she is feeling the need to have her own space - space in which she can be surrounded by her own chaos without her dad's being mixed in. (OK - do you have the visual?  Are you paddling your imaginary canoe through the BOUNDARY waters???? 🤣) 

I was led to support her yearning.  Yesterday, she and I tackled the garage and started going through all sorts of stuff - organizing it, sorting it, making piles of things to keep, things to give away, things to toss, and piles of belongings for me, for her, her dad, and her brother (who uses the garage for working on his motor cycles and other things).  Whew!  I am glad to report that we were successful, and only have a few more things in the larger half of the basement to move, and the cleaning, scouring, and painting can commence! 

I might mention that this was after we tackled her laundry - which needed to be taken to the laundromat (given that the washing machine was on the blink), then brought home, then hung out to dry.  Later in the day, I took down her clothing so that she could keep an appointment.  I finished what I could in the basement, and then threw a small load of clothes (that were resistant to line drying) into the dryer.  Later I pulled them out and put them with the rest of her clothes taken down from the line.

I pondered as I worked yesterday:  Was I getting resentful?  Was I doing what I wanted to be doing?  Yes.  It felt good.  I was happy to be doing what I felt like I was supposed to be doing.  Later that evening, Maya asked, "Can I ask you a favor?"  And I started paddling.  "You can ask - but I'm not sure that I will be able to do it.  I'm pretty beat."  She wanted to know if I could walk the dog the next morning.  I said no, partly because I had a breakfast date with someone, but mostly because I didn't want to do it.  And - I will admit - I was relieved that I had an excuse.  I stopped giving before I became resentful.  And you know what?  I know that is exactly what my daughter would want me to do.  She will ask.  And it's my job to discern whether it's a yes or no - not her job - my job.

My next step for growth?  Being able to say "no" without feeling relieved I've got an excuse...being able to say "no" and/or "yes," and trusting that it is the best decision for the greatest good for all concerned - and that I have discerned an answer by mixing my own feelings into the equation. 

Pull out your oars, my friends.  It's time to start paddling...or, if you are floating, having your oars at the ready.  😊

Love from Me to You -

Deborah

 

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