~Twelve Months~Fifty Two Weeks~Three Hundred Sixty Five Days

Life is like riding a bicycle ~ to keep your balance, you must keep moving. Albert Einstein

It was a year ago this month that I begin not feeling well.  I went to my brother Vincent’s house in Manhattan for the weekend with my mother, with a plan to cook Saturday night’s dinner.  I brought everything.   All of the food, the crock pot, the organic wine, and even the flour to make gravy along with the gravy maker.  I was excited to spend the weekend in the city.

I got up Saturday morning and didn’t feel well.  It lasted the whole day, but I didn’t let on.  I had a mission and was going to complete it.    We went out for a while and I kept ignoring my deteriorating feeling of illness, thinking that if I just get through dinner and sleep through the night, I’ll feel like a new person on Sunday morning.

I spent a couple of hours in the kitchen that afternoon between cooking and cleaning up, and I hated every minute of it.  I had some wine for dinner and it tasted like poison.  I excused myself when the kitchen was clean and went to bed.

I slept terribly and still felt off in the morning.  I felt an urgency to pack up my stuff and head home, 150 miles north.  I finally told my brother that I didn’t feel good and needed to leave ASAP.  He helped me pack up, and Mom and I headed home.

When we got there, I went straight to bed and didn’t get up for 15 hours.  I felt a little better the next day and just chalked it up to always trying to do too much, which has been a hallmark of mine my whole life.

I felt terrible on and off for the next 6 weeks and began to lose weight.  It wasn’t until I ended up in the emergency room on April 10th that my mysterious ailment was revealed.  My life changed the moment the ER Doc came in to my room and said “Your lymph nodes are enlarged and dying.”  Before that report, Brian and I were talking about retirement and traveling.  They had given me Morphine, so I forgot how horrible I had been feeling and was happy talking about the future.

Since that day, it’s been an ongoing test of patience for both Brian and I, and my family and friends.  We’ve waited through the scheduling of three biopsies, the results, multiple doctor appointments and three more emergency room visits before treatment began in August.

Although we are in another holding pattern as we wait for another biopsy (a whole year after I began not feeling well), the results, and God knows how many more doctor appointments, I feel really good and am keeping busy.  I’m back working, painting, writing, spending time with friends, and enjoying the winter a little more than I ever did.

Sometimes, I forget about the situation I’m in, and then I walk by a mirror and see my very short hair and it jolts me back to reality.  I don’t stay there for long because I’m driven to  move on to the next fun thing.

It’s the only way I know how to roll through these uninvited times.

“It’s the end of the world as we know it, and I feel fine!”

(This is a song by R.E.M and the motto of Andy who is a Super-Moderator on a Lymphoma support site.  Now I’ve adopted it too.)

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My friend, Care, and I cross-country skiing today at Camp Chingachgook’s Winter Wonderland. It was 50 degrees, a lot of sunshine, and a warm gentle breeze.

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Boston Mission Accomplished

~Living with Lymphoma~

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A glimmer of hope was waiting for us at my appointment with my Boston Hematologist today.  I brought  a CD of my last three PET Scans for Dr. Jacobson to look at.  He explained that although the area that still lights up lit up a little more than on the scan I had just after I finished chemo, the area itself was not any bigger.  So, being in a position of a second opinion person as a major Lymphoma expert, I’m sure he knows that people are more likely than not to take his advice, so he better be considering all possibilities.

He said that there are many false positives with PET Scans and the fact that the area is not any bigger requires him to consider that maybe the Lymphoma is gone.  He can’t endorse sending someone into a stem cell transplant phase without more definitive evidence that they actually need one because it’s a harsh series of treatments and recovery.  He recommended that I have biopsy of the area that lights up.  If it comes up positive for lymphoma, then I begin the process for a stem cell transplant.  If the results of the biopsy are questionable or “negative” (I’m sure there are also false negatives), then he recommends that I have another PET Scan in three months.

So, my next assignment is to have the biopsy.  I have another appointment with the local stem cell transplant doctor next week and she’ll hook me up with the group who will do the biopsy.

I’m an expert on waiting by now.  And at the moment it’s easier to wait because I feel good and can conduct my life in a “normal” fashion by working, taking care of my mother, etc.   So, the glimmer of hope we received today will enhance my mission to live with as little fear and worry about my situation as possible.

Brian and I went to Boston last night because of the storm forecasted for our area and the Boston area.  It started snowing at 9am this morning in Boston, and by the time we left Dana Farber, the roads were a mess.   Brian drove 170 miles in a raging storm, and we made it home without incident.

We have angels following us at every turn.

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Notice the direction of the rig. We were heading west, and he was pointed east. He wasn’t moving, thank God, but was probably trying to figure out how to turn the truck in the right direction.

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Nothing special about this truck. It just made me hungry.

 

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PET Scan Results

Living with Lymphoma.

I had my appointment with my Hematologist today, and unfortunately, my PET Scan from Monday showed residual disease.  My Hematologist has recommended three rounds of a different and harsher kind of Chemo to wipe out the disease, and then have a Stem Cell Transplant. The transplant he’s referring to will be using my own stem cells which will need to be harvested and put back in.  I’m not sure of all of the procedures or the sequences yet, but I’m sure I’ll be close to an expert some day. 

My doctor wants me to go back to Boston for a second opinion about this.  I already have an appointment for that next Thursday, and I have another appointment with our local Stem Cell Transplant Doctor here in town on the February 15th.   So the next route of treatment is not set in stone yet.

As I look back on my unplanned expedition, I realize that I started not feeling well last February.  It’s been a year now, and so much has changed for me.  I’m going to be contemplating how this has affected me in all ways, including physically, emotionally, spiritually, etc., and likely writing about it.  It’ll be therapeutic to continue sharing my story with all of you, even though I know I don’t know some of you.   I thank all who have read my stories.  I indebted and grateful.

I painted the scene below this week with my friend Ben, and my friend Trish wrote a poem to go with it that I thought was absolutely beautiful.  Wonderful connections with people I know and people I don’t know is the gold ribbon that keeps me going.

A Shadow Set Aside
She bustled out in haste beneath a red umbrella
-that elegant extension of her soul.
Never for a moment to be thought of, or thoughtlessly left behind.
Soon her lonely purpose slowed to the pace of the surrounding fog
a sigh
a slight smile
the worry set aside for a time
this time
is one of beauty.

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The other day, a friend of mine said to me: 

“You have to win, and so you will”. 

It’s been my mantra all week. 

I know this was not good news, but I haven’t given up hope.

Posted in Travels with Dad | 8 Comments

“I Don’t Have a Home”

Living with Lymphoma and a Mother who has Dementia

My mother says this or something similar to me almost every night.  She asks who owns the house we’re in and who’s in charge.  She recognizes her bed and wants to know how it got here.  She even recognizes her kitchen sink and is perplexed why it’s in a place she’s never been to before.   She says she just met my sister this week and was told that my sister is her daughter.  My mother thinks she’s nice and is glad to meet her.  One day recently, she talked to me about me, not knowing it was me she was talking to.  She said that “she” loves to help out and help people when she can, but she also doesn’t like being told what to do.  I smiled a little, wanting to know what else she thought of this “Diane” person.

The answers I have for all of her questions change frequently.  I used to try to maintain the truth like telling her she owns this house, but she doesn’t believe me.  So I tell her I own it, and I brought her bed here so she could stay with us for a while.

She goes to daycare twice a week, and has home health aides coming to the house three times a week so I can work and not worry about her.  She’s not thrilled with any of it, and especially doesn’t like daycare because she feels sorry for at least one of the ladies who keeps asking when she can go home.  It saddens her, and she’s let me know how she feels.    But a few weeks ago she said she wanted to talk to me about something.  I sat down and was on the edge of my seat with anticipation.  She told me that she’s been selfish and stupid about daycare and home care and that she was sorry.  She said she knows I’m doing my best taking care of her while also working and running a household.    This kind of conversation is in such sharp contrast to the ones I mentioned earlier.  She has great insight sometimes, but the last thing I want is for her to be sorry about anything.

I don’t feel too bad about bringing her to daycare because every time I pick her up, she seems happy and alert, and tells me that lunch was very good.   When I picked her up yesterday, she handed me a card that she had made, and small hand-made pot of flowers that someone helped her with.  She had one of the staff people write in the card for her because it’s difficult for her to write due to some tremors.   Tammy, the staff person said that Mom said she didn’t want it to be sappy when Tammy offered to embellish it, so the words are all Mom’s.

Here’s the flower pot and card:

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She was thrilled to give these little gifts to me, and I was even more thrilled to get them.  Although it can be a little upsetting being there, she’s still very well liked and taken care of, and given opportunities she wouldn’t otherwise have.

On the way home, she told me she was homeless.  I asked her to explain what she meant, and she said that if something happens to me, she’ll have nowhere to go.   I begged her to stop worrying about things that haven’t happened.

I’m writing all of this with the heavy reminder that I have a PET Scan scheduled for next Monday, and I meet with my Hematologist on Friday to hear about the results.  This will be a day when I learn about the next chapter of my life…either the one that allows me to return to living without nearly constant worrying about the existence of cancer in my body, or one that puts me on another path of treatments, waiting for the hopeful day when I can return to less worrying.

In any event, my mother will never be homeless no matter what happens.

I just wish she could remember at least this.

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***In 2012, my mother gave me permission to write about my father’s life with Alzheimer’s.  When she was diagnosed with dementia a few years ago, she also gave me permission to write about her.  She doesn’t read my posts anymore because she can’t remember how to get on to her computer. I write about her with her standing permission.***

 

 

Posted in Life with Mom, What Else: About Life | 8 Comments

“That sounds like Rob.”

I was having some things boxed and shipped at Staples a few weeks ago, and it was taking an inordinate amount of time.  Rob and his adult granddaughter, whom I’d never met before, were standing there waiting for assistance.  I requested the person helping me to help Rob because I could see that it was going to take at least another 20 minutes to finish my order.  The clerk began assisting them at a nearby copier, and Rob let his granddaughter take over.  He strolled over to my mother and me and asked if we knew who Sybil Ludington was.  At first, I was ready for a political discussion since it seems like people feel compelled to continue discussions on the state of our states, but this was not the case.  I let my guard down and learned something.    Rob explained that Sybil Ludington was a young woman who rode from town to town in April of 1777 to alert militia forces of the approach of the British forces.  But unlike Paul Revere, she did not reach the fame that he did because Longfellow couldn’t find a word to rhyme with Ludington.   True or not, 10 minutes with Rob passed in a flash.  He walked away towards his granddaughter and before leaving the store, swung back around to Mom and me and handed us an invitation to his and his wife’s holiday party.   I decided at that moment that I wasn’t going to miss it.

Much to Rob’s surprise, we showed up at his house last night.  It was a festive scene with lots of people, food, and spirits.  Rob took our coats and made us feel like old friends.  We talked to several party goers, all asking if we were from the neighborhood because they didn’t recognize us.  I explained each time that I met Rob at Staples a few weeks ago and he invited us to his party.  Every person said “That sounds like Rob.”  It finally came back to us from someone we had already met, that someone said to her “Have you met the Staples couple yet?”

After asking a few neighbors which lady was Rob’s wife, Joan, I went up to her and introduced myself by telling her where I met Rob.  She said wondered who we were and told us a story that Rob brought home a Hitchhiker about 30 years ago who ended up staying with them for two days.  So this wasn’t his first time inviting strangers to their home.

Unfortunately, we live in a world where extending hospitality to strangers is risky business.  I’m glad I met Rob, I’m glad for the invitation, and I’m glad we went.

Before we left, he invited us to a summer pool party.

I wonder if he’ll be surprised when we show up.

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A Team of Physicians

Living my life with lymphoma.

Since my last post, I’ve met with a radiation oncologist and a stem cell transplant (SCT) physician.  I learned that I’m not a candidate for radiation because of where the area of disease is located and the size of it.  Although most of the area is disease-free, it’s speckled throughout and radiating that large of an area would cause permanent kidney damage.  We agreed that fixing one enormous problem would only cause another one, so radiation is not an option.

Next, I met with the SCT doctor who ultimately said that I don’t look like a person who needs a SCT.  She explained some complicated things about some components of my disease and the fact that I’ve only had one line of chemo.  She discussed this with my hematologist and the doctor I saw in Boston in July and initially said that she thought that 1-2 more rounds of chemo would do the trick.  Then they all agreed that the chemo that I had (6 rounds) is likely still working and recommends another PET scan in 6 weeks.   My hematologist also said that the research suggests that two more rounds of chemo is not likely to be beneficial and can become toxic.

So, this past week has been a combination of waiting, wondering, worrying, mentally preparing for a STC or more chemo, and an abundance of uncertainty.  I’m left having to put my faith in my medical team, knowing that they are doing their best with the knowledge and experience they have, which far surpasses mine.

As I write this, it’s snowing and looks amazingly beautiful.  I even feel well enough to shovel.  I tell people that if I didn’t know I had a disease, I wouldn’t know I have a disease.

I feel good and for today, that’s good enough.

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My latest painting from my watercolor class.

 

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The PET scan results and the next steps

I met with my hematologist today to go over the results of the PET scan I had on Tuesday.  Unfortunately, there’s an area that has been reduced by 75%, but is still active, and logically cannot remain in my body.  The rest of the disease is gone!  I’m scheduled to meet with a radiation oncologist next week, and waiting for an appointment with the Stem Cell Transplant team.  My hematologist still hopes for a cure and needs input from these two specialties to continue on.

Although it’s not the news we were dreaming of, it is reality and needs to be accepted and dealt with.    I will continue on knowing that I have an amazing support network of family and friends, and even some people I don’t know.  Please know that whether you’ve written to me responding to my post(s) or have read my posts and followed along silently, I’m indebted to your kindness for doing so.

My cousin-in-law Larry wrote a song and composed the music for a friend of his in 2009 who was dealing with cancer.  He pulled it out of the vault and sent it to me.  It’s called “She Believes”, and I have attached some of the lyrics.

She had all the little things that mattered in life

The future was good

Plans were aligned

The day she left the room devastated

A turn for the worst, unanticipated.

Mortality Staring

Family caring

She believes in her heart

She’s never unsure

Believes in her soul

She just has to endure

Her courage is strong

Her spirit is tough

She believes in herself

And that’s enough

My Blog host, WordPress is unable to accommodate an MP3 attachment, but the song, sung by Larry and piano played by him is beautiful and meaningful to me.  My heartfelt thanks to him.

As I wait for my appointments, I plan on enjoying the holiday season that’s upon us.  Brian and I have gone to some Victorian Strolls in nearby cities and are going to two more.  We’ve been invited to a couple of house parties and are looking forward to them as well.

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Meanwhile, I’ll keep busy by painting and applying some techniques I’ve learned in a watercolor class I’ve been taking.  Here’s one from this semester.

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The act of painting is meditative.  If something turns out good, it’s a bonus.

Happy Holidays to all.

Posted in What Else: About Life | 10 Comments