I’m a Puzzle

~Living my Life with Lymphoma~

I had my appointment today with my hematologist.  He walked into the room and said “This is a puzzle.  I’ve been thinking of you and your case for a few days now, ever since I got the biopsy report back.”  He said it doesn’t show any evidence of lymphoma.  He was surprised because the PET scan lit up in that area.  It mostly shows scar tissue and some other cells, but not lymphoma.   He said as there is such a thing as a false positive for PET scans, there is also such a thing as false negatives for biopsies, but for now, not to worry.

In any event, I’ve been put on a monitoring program where I’ll have another PET scan at the end of April.  Meanwhile, I will rejoice in this little break from the madness, and continue on with my life.  We’ve been invited to three parties during the next three weeks, and now I can RSVP saying I can’t wait to go!  I will embrace this break and treat it like it’s the divine gift that it is.

I’m lost for words and not able to describe the depth of my gratefulness and gratitude for the prayers, positive words, encouragement, humor, cards, gifts, and the willingness to travel along with me during this past year.  I can only say that I will pay the goodness forward every chance I have because I know first-hand how important it is to hold others up during their darkest days.

I’ve been reading a book on survivors of lymphoma put together by author Jamie Reno, who is also a 15 year survivor of Non-Hodgkin’s Lymphoma.  Forty people tell their stories and why they think they’ve survived and stayed alive.

As the book’s names implies, it has given me much hope.

 

 

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Change in plans. Patience challenged. Hope stretches.

~Living my Life with Lymphoma~

The officials have declared a state of emergency in the wake of Stella, the blizzard of 2017.   Only emergency travel is advised from Virginia to New Hampshire.  We happen to be on the direct path of this Nor ‘eastern, and the world seems to have just stopped.

Today was supposed to be a day for a turning point for me.  I was supposed to meet with my hematologist this afternoon to learn of the results of my latest biopsy that I had over a week ago.  I’ve had 4 months off from chemo and still feel good.  Unfortunately, feeling good on its own amounts to almost nothing.  Lymphoma is a funny disease, and people can actually have it for years and not know it.  I’m pretty sure I was in this elite club for at least three years before becoming overwhelmed with sickness and pain last year.

My appointment has been rescheduled for tomorrow afternoon, March 15th and I will either learn that I need a stem cell transplant, more chemo, or my hiatus will continue with close monitoring.

I belong to some Facebook support groups for this unwelcomed disease and have found an enormous amount of support.  We’re all in the same boat when it comes to waiting, wondering, and worrying, and I’m heading there right now for some friendly loyalty.

Tisha, a FB support group member said:

“I am always amazed how our biggest fears bring strangers together and make us friends!”

That’s exactly what’s happened.

Thank God for social media.

Painting today. A good distraction.

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Pleasant Confusion

“Life with Mom”

My mother’s confusion surfaces every day…sometimes multiple times a day.  And her bewilderment usually surrounds her home, or in her mind, her lack of a home.   She told me yesterday that she needs to find a place to rent because she’s too old to buy something now.  And after that, she guesses she needs to start looking for a nursing home.   I told her that we “rent” this place we’re in now and the rent is paid up through the end of March, so we don’t even have to think about it at the moment.

The other night while she and I were sitting in the living room together, she asked me what the name of this club was.  She’s asked me this before and depending on my level of tiredness, the answers I give are either creative or lame.  Either way, she always accepts my response.  This particular night, I was having trouble thinking up something, and as luck would have it, Brian was walking by.  I asked him what the name of this club was, while discretely pointing at my mother.  He stumbled a little trying to answer, but finally came up with something.  I thought I’d share the burden of answering these questions with him, and to see how creative he could be.  He came up with something that worked perfectly.

I have a beautiful photograph of Mom when she was about 20 years old in my living room.  She sees it every night while sitting with me after dinner.  Last week, she told me that Diane (she doesn’t realize it’s me, Diane, who she’s talking to) takes her to many different houses (I don’t) and in every house, there’s the same photograph of her.   I told her that people must think she’s a popular movie star, and asked her if anyone ever asks for her autograph.  She laughed.  I changed the subject.

The other night when I was putting her to bed, she saw her shoes next to the night stand.  She was surprised to see them and wondered how they got here since she “doesn’t” live here.  By the time I’m helping her to bed, I’m usually extremely tired.  I took a deep breath, and said “Gosh, you ask too many questions sometimes.”  She laughed and went to bed.

A few weeks ago when we got home from grocery shopping, I brought her and her groceries over to her little apartment so she could put them away like we’ve done a thousand times.  I went back to the house (the house and apartment are connected from inside) and put my own groceries away.  When I finished, I went back to her apartment to give her medication and she was gone.  I began to panic, running around looking for her.  The phone was ringing and I wasn’t going to answer it because I needed to stay focused on finding her.  I finally answered it because the person hung up and called again.  I was so glad I answered because it was a neighbor from down the road who said my mother was there with a bag of bananas and cat food.  My immediate sense of relief was mixed with a little fear wondering if leaving the house was going to begin the next phase of dementia.  She was looking for her home and was unable to be consoled for the rest of the day.  She cried that evening, feeling like she didn’t know where she belonged.  Nothing I could do or say made her feel better that night.

She’s become less and less active.  Her mobility is fading probably due to Parkinson’s, Lewy Body Dementia, and her diagnosis of Rheumatoid Arthritis.  She’s also having trouble reading the newspaper, something she’s done her entire life.  I find that the more she sits around and does nothing, the more she sits around and does nothing.  So I thought that she and I could do artwork together this morning to keep her active and maybe distracted from her confusion as to where she lives.   She’s never shown an interest in any kind of art, but I was hoping she would get lost in coloring some simple pictures.  I cut out a drawing from a coloring book and gave her some markers.  She reluctantly agreed to color while I painted.  I watched her closely during our art hour, and she seemed to be heavily concentrating on her masterpiece.

We both got tired and gave up for a while.  We’ll finish our show pieces later this week.

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As I’m sitting here writing this, she’s mentioning to me that she has to do something about finding a place to live.  I asked her (again) if she would just stay with me.  She said she’ll think about it, but doesn’t want to tie me down or interrupt my life.

Next week will be four years since we moved in with her.  She would sound so logical if this was another place and time.

But we all know that her mission for finding her own place to live is not going to happen.   And that’s that.

I just have to keep trying to convince her.

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

~Living my Life with Lymphoma~

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.

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“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.***

 

 

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