Final Post

This will be the last post of Meds and Maggie.  Despite my best efforts, my body gave in on August 19, 2016.  This blog has been my journal, and I thank so many of you for following the journey with me.  Your comments, cards, emails and calls of support made my ‘heart smile’ ( in my daughter’s words) and kept my hope and determination up when spirits were down.  I found that documenting the process helped me to cope, and remember details that were often necessary for my treatment.  I appreciate your sharing it with me.  Please don’t say that cancer finally won, as I feel I worked as hard as I could to stop the process and refuse to believe it ‘won.’  Some things just can’t be stopped no matter how hard you try.

I never gave enough credit to my husband Kevin throughout this process, but without him, my life and fight would have been so much harder.  He was a constant advocate for me, attending SO many doctor’s appointments near and far, keeping copious notes and paperwork, researching clinical trials, in addition to the household tasks he learned to take over.  He never gave up, and refused to let me give up either, buoying me up on the bad days and help to make positive memories on the good ones.  I love him so much and I hope he finds happiness in his future.

My two daughters Janice and Cheryl are my greatest legacy and pride and joy.  This has been a 7 year ordeal for them, and something I would have done anything to spare them of.  However, we raised amazing children, and they handled it all with such optimism, faith and constant support.  Their caring, visits and phone calls were always highlights to my days.  My love for them will never end, and I know they will be happy, successful and fulfilled.

My life has been complete and I leave with no regrets.  I married an amazing man, raised two wonderful girls, traveled, gave back when I could, loved my sports and had a great time while I was here.  Of course there is always more you hope to do, but isn’t that always true?

Please remember me with a smile and a laugh, as that is how I hope to be thought of.  My time on earth with all of you has been amazing and I look forward to the next journey my soul will take.  Peace, happiness and love – Cindy

Hospital Too Long!

July 10

It’s been a tough week and I feel like I’m becoming a permanent resident at Osteopathic hospital.  Tuesday evening I had a lot of difficulty breathing and was unable to catch my breath so we ended up at the ER and I have been in the hospital since.  They believe I have pneumonia and with the lung mets it is adding to the difficulty of breathing.

The focus right now is on treating the pneumonia and getting me back to a point where I can go home.  It sounds like I will be here at a minimum for a few more days.  Cheryl came up Friday and has been helping provide a distraction for Kevin and I while here.  Lucas and Andy came up Friday night and it’s been entertaining watching Lucas, and his ball of energy, be contained in a hospital. Janice and Chris just arrived today so I have plenty of company. As always Maggie has been my vigilant pet therapy dog and has spent each day, almost the whole day, at the foot of my bed.  She certainly makes the staff and others around the hospital smile and she is on a first name basis with everyone.

It is nice having everyone around and we feel lucky we have such great daughters who are willing to make the journey (a much longer trip for Jan than Cheryl) to be here and spend time with us.  We’ll keep you posted on progress and keeping my fingers crossed I can make it back home within a few days.  

August 14 (Written by Janice & Cheryl)

Mom was released from the hospital on Tuesday, July 12, and we apologize for not updating the blog sooner.  She wrote the post above from the hospital, and after an outpouring of support we wanted to update everyone on how she’s doing.

Unfortunately when she was released last month it was with the help of Homeland Hospice, who have been an incredible source of support for us as we continue to figure out the best ways to care for her at home.  As Mom has mentioned in the past, she has hit the end of possible treatments for her type of cancer, and while we had all remained hopeful about several possible clinical trials, she is no longer strong enough to sustain the kind of travel needed.  She is resting comfortably at home, and we are all grateful that her family has been able to be here, and her parents and brother/sister-in-law and nephew have all been able to make trips down to visit.

We do want to say a huge thank you to everyone who has sent along their thoughts and prayers, sent cards (she loves when we read them to her), who helped contribute to her Memory Book last Christmas (which we also read to her regularly), and to everyone who has signed up to bring meals.  I cannot express how helpful it has been to not have to worry about grocery shopping or cooking, and we are SO grateful for everyone who has taken the time to cook and bring food.

And of course, a couple more pictures of Lucas and the puggles (two of her very favorite things).

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I Got A Tattoo!

 

In 2009 I said if I made 5 years I would get a tattoo with the girls.  5 was the magic ‘cure’ time.  I made 4 years, so I wasn’t obligated.  However, they picked out a lovely hand drawn saying ‘I Am with you.  I liked the words and had it drawn on my right underarm.  It’s healing well and I like it.  Both girls put it on their left foot.  Jan found it hurt more than the last one, probably due to the bones in the foot.  I didn’t find it hurt that much.  I thought their sentiment was authentic, the 3 of thus are there whatever and I can capitalize the Am and make it about God too.

We had a wonderful time all week, Jan came Sunday and stayed a week.  She works while here and says she is fine, so I have to trust her.  She cooks, mothers me constantly. but is great company.  Thursday we left and picked up little Lucas.  It always is a joy to see him and he really enjoys outside now.  His bubble mower is his favorite toy with his water toy. He is one busy little guy!

We got the tattoos Friday and the weather was perfect.  We spent a lot of time by the pool which is nice.  Sat Cheryl and Andy and Lucas went to a Trembley family reunion all day Sat and we just hung out by the pool, while Kevin worked mowing the lawn and doing laundry.  At least Sunday he got to play golf. then play with Lucas and swim.  Girls made dinner and it was great and Jan and us left Monday.  Fortunately I have 2 so amazing daughters and they don’t seem to mind having us around!

In Blessed Memory of Linda Spangler

Many of you know of my last 2 years with the bible study, I go when I feel well enough, and alway feel uplifted by the spirit and willingness to share.  Linda was one of the shining examples, haviog attentented and lead many studies as well as attend church regularly.   Her family was perfect, and she a gracious hostess.  She and I faced the same battle, stage 4 cancer, altho different kinds.  We even have the same oncologist.  However Linda succumbed last Wed.. and we will miss he dearly.  Her obit and funeral is Saturday at 11 in Hershey Free Church at  11:00.

http://www.jessegeiglefuneralhome.com/obituary/Linda-Elaine-Spangler/Harrisburg-PA/1630766

 

 

 

 

News From Detroit

Well, we made the long trip Monday and Tuesday to Detroit.  We had decent weather, it is about 8 hours, the hotel was nice, but it was a long 2 days.  We went to Karamos Cancer Center associated with Wayne State University. The were all very nice and preliminary edits show I qualify.   I looked like a 2 I was so perky!  It is a Phase I Clinical trial using immuno-theraphy, looking for dosage strength.  But the trial has shown improvements in animals.  This will be the first time on humans.  They were able to do a biopsy Tuesday afternoon, which is why we were so late home (after 11).  But it saved us a trip back and I have not had a biopsy since initial surgery in 2009.  I have heard from several doctor’s that the pathology could change, and they need a recent biopsy to determine qualification.

The only down side could be travel.  There are other sites but this is the easiest.  Some trials pay for housing, some do not.  Plus we have the Maggie issue.  nd I stay on it as long as it works.  I want it to, but I hate the travel and potential weather.  It could be (worst case) 8 time a  month in the first 2 months!!  It is still a bit undefined at this point since it isn’t open.  The other trial I qualify for is out of Cornell/Weill in NYC.  There are 2, one we know is NOT immunp-therapy, which at this point, I don’t see the point of more chemo.  Nothing has worked so far.  Don’t know about the second trial yet

I got my appetite back a bit (yeah!) so hopefully my weight will increase.  I was up to 106 yesterday!  Still trying to walk the dog part way, Kevin walks me, I use the chair to walk – it’s slow.  Lots of ice cream which I can now taste!  They did give me approval to go ahead with the radiation of the leg, which I start today.  I SO hope it helps with the pain, now that I am gaining strength, I would like to feel better!

Cheryl, Andy and Lucas were here this past weekend while ‘their’ (and I use it loosely since Cheryl only played twice) tennis team competed in sectionals at Lancaster.  Much to our surprise and excitement they made it to Nationals in mixed double 7.0.   Andy is SO NOT a 3.5, but that is where the computer put him.  They are ecstatic since they get a solid 4.0 as a 3.5.  Needless to say he won all his matches.  Cheryl doesn’t qualify, as a 4.0 she only played in 2 matches and you need 3.  So it was exciting, hard to watch, as I used to PLAY there!

Thank you all so much for your kind comments on the gymnastics video, Janice did NOT ask permission first, and I was a tad embarrassed!  It is a part of my life I forget about, except when teaching girls that Mom WAS an early rebel, so don’t be afraid to rock the boat!  I have to remember that it was a LONG time ago and levels have improved.   I DID beat the boys tho, and I even went to states (where another female won – go ladies!)

I also want to give out a huge shout-out to all of you that continue to reach out to me.  Cards, flowers, packages, food, texts to keep in touch, It means so much to me.  I wish I could reach out to each of you but this will have to do.  This seems to be an never-lasting vigil, but we will continue to fight the good fight! (Kevin being stuck with all the driving!)

 

 

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Too Long in the Hospital

I’m so sorry it’s been so long since I’ve updated the blog but it’s been a difficult few weeks. On Thursday, May 19th I got a call from the oncologist that my port was compromised and they wanted me to head right to the ER. Kevin was in Philadelphia for a business meeting so luckily two friends were available to drive me to the ER where Kevin met us as quickly as he could make the drive back. After an hour they admitted me to the ER and then the fun began. It was a longer stay than anticipated and a few of the days became quite blurry. The infection spread and compromised my blood system so by Friday I was in the ICU for closer monitoring until the infection cleared up. Through it all I had my faithful pet therapy dog Maggie visiting every day sleeping right at my feet on the bed. 6 Days later they finally released me! I unfortunately have had little appetite and left the hospital feeling rather weak. The poor appetite has been a consistent thing and it’s resulted in losing 30 pounds over the last 3 months. I’ve been on antibiotics since returning home and take them three times a day for four weeks. Kevin has been a good nurse and is taking fantastic care of me.  I count my lucky stars every day for his love and care. It’s been a challenge to get my strength back but I’ve been trying to walk a bit every day.

I was so fortunate to have both girls come and spend the week with us while I was in the hospital. They have been absolutely wonderful but I hate to see them go through this.  It’s very hard to let people do things for you all the time when you’re used to being independent.  Lucas was able to make a guest appearance for some of it as well which brightened everyones spirits. My sister-in law, parents, Chris and Andrew also came down so we had plenty of company and it was so nice to have everyone together.  After my hospital release I was able to get out and about and we made a fun family trip to Troegs to enjoy the beautiful weather and some beer.

Unfortunately the latest oncology report has shown progression so we have stopped the latest chemo treatment. At this point I have exhausted all the standard care of treatment and am left with clinical trials as the only option for further treatment. On Monday we are driving out to Detroit for a Tuesday appointment for one possible clinical trial. I just have to look like Arnold Schwarzenegger by then!! We have also found a trial in NYC that it seems I qualify for but we aren’t sure yet if that is an immunotherapy trial or not. We are looking into it and checking out all available options.

So my latest news isn’t great but I’m hoping to get some strength back so I can continue fighting with what options I have available to me.  I’ll keep you posted as we determine what clinical trial to pursue and if I get accepted.

Where is the Good News Hiding???

Kevin and i were talking yesterday, and neither of us could remember a single GOOD result from a chemo, a scan or a radiation.  I suppose 2 times without brain mets, but they are back now.  So I shouldn’t have been surprised with the MRI of the hip.   The doctor called back yesterday saying it was the most bizarre scan she had ever seen.  Bottom line, there are may new metastasis  in the right hip.  I told them that 9 months ago!  The pain was the same, and I can’t explain why the bone scan didn’t show it.   SO…..  pain management cannot handle it, except for pain control, so it goes sent back to oncology.  This is telling you that the medication isn’t working and time to change.  Problem is that this was the last choice.  Now it’s trying previous failed medications and perhaps mixing treatments.  She will have to research and we will have t0 make an appointment.  Above is a picture spread on what I go though daily, for 10 days of radiation on the brain.  Then I will have to do radiation on the leg – IF they are able to.   The risk of reradiating is the bone will become very weak.   We we have to hear her take.   Anyhow, first I must check in at the outer lobby.   After approval you head to the gown room when you put 2 on tops and wait.  Next is 3 of my treatment folks.  They are all terrific, very careful, kind and considerate.  Today they were pretty efficient but due to mechanical difficulties and just running late, I am often there for an hour.  Plus the 1/2 hour each way.  And you cannot take chemo while radiating, so having to do it twice, I will miss a lot of chemo!  Of late I have had mostly couch time, with my leg still causing me to limp, the fatigue of the radiation, as well as nausea from from pills.   I just am looking forward with being done, I am beginning to feel like a piece of meat!!

 

Cheryl, Andy and Lucas flew down to Durham to spend a long weekend.  They had a real good time, Aunt Jan got her Lucas fix, and introduced him to  ‘her’ animals.   The goats were the favorite, and the barnyard fowl the least.   He did enjoy them though, to the extent of kissing the goats!   It was a good visit and easy for them since they could fly direct from Trenton.

This set of photos is of the redone back yard at Washington Crossing.  They had the brick power washed, some removed that was always moldy, got new patio furniture and put up a special fence for Lucas.  Thought you might enjoy the changes.

 

 

 

 

Whole Brain Drain

After the growth of new tumors in the brain, both sets of doctors agreed that it was time for whole brain radiation.  This involves 5 days a week for 2 weeks, and SOME cognitive impact, although no one is saying or knows how much effect this will have.  I am taking pills (yes, MORE pills) to try and combat it.  Especially since the performing oncologist just called and said that due to the view of tumors in that area, they cannot do the sparing techniques.  Plus I cannot be undergoing chemo while being treated, AND, I can’t be off chemo for more than 3 weeks.  It becomes a true logistical nightmare, added to the pills, appointments and health care.  Fortunately for us, they have paid almost everything (after the ridiculous out of pocket!) and are good to work with.  So the plan at the moment is chemo Tues, simulation radiation Friday, and treatment begins the next Monday.  Can’t say I am excited about this but they said it would not be more noticeable than aging.  And that was going strong without the cancer!

More Birthday Pics

Can you imagine 90?  How fortunate

 

 

 

 

 

I also learned something more about the diarrhea when they requested lab work.  Turns out we all have the C-DIFF bacteria in our system but the immune system keeps it under control.  When your immune system is lacking (I had low white blood counts and they forgot the boosting Neulasta shot) and especially if you were exposed to antibiotics (I was on the 4 day Z-PAC), you are at high risk and very contagious.  So I am on a horrible pill 3X day that causes nausea for 2 weeks.  This was NOT a welcome disease!

Went to pain mgt. No further treatment at this point as nothing worked.   She scheduled an MRI of the hip next week, see if that shows anything!  Just as well it is still sore, the nausea keeps me close to home.  All in all, a lot of couch time, and eyes too blurry to read.  I can attest, American TV needs help!

Good place to relax is the newly renovated Washington Crossing House.  New bricks, layout, lawn furniture, and tons of toys!.  Let the summer weather commence!  We hope to get there tomorrow until Thursday, but we will take it if it rains!  Andrew, Cheryl and Lucas fly down to Durham this weekend, lets hope it goes well. Janice gets to welcome  them to her home town for the reunion of the sisters in the southern region!

Kevin continues to search for clinical trials with no luck except one where we are waiting for a response.  Apparently my entire ‘mix’ is unique enough that no researchers are looking at it.  He is becoming quite the expert tho, so if you have ???, give him a call!

As a final Hurrah! my volleyball team play offs were last week.  No, I don’t play anymore, but I DID until November, plus I do the admin work for the team. I dragged myself and a soccer chair to the gym and I am glad I did.  There were 2 matches to be played and we never lost a game, taking the finals from the ranking #1 team!  It was wonderful, especially when you consider how absolutely terrific these women are, you could not ask for more kind, patient and FUN women.  And I have to point out the age, 5/7 are over 50, the other 2 in their 40s.  Our opponents were 20-30s.  To be fair, they had 5, we had 6, but the results are IN regardless.

 

 

 

Cooper MD Anderson Gamma Knife Fails Us

Bird Watching

You know he doesn’t feel well if he is cuddling!

We went to visit the ‘Twin Towers’, my radiation oncologists at Cooper in NJ.  Up until now, they have treated the new lesions or in the last 2 MRIs there was no change.  So I wasn’t really concerned either way.  There were 3 new lesions (which in my history is not a large number.)  However at this point they feel since the lungs are not controlled, more lesions will just coming and they will have to keep treating.  This way they, by using whole brain radiation, zap anything, anywhere in the brain regardless of the size, and that gives you 6 months.  You can only do it once, and new lesions must be gamma/cyber knife treated.  There is a ‘sparing’ technique which is possible to save damage to short tern memory.  We won’t know if that is possible until the radiation doctor has the images.  So I put off whole radiation for almost a year, and the old brain cells will have to take the hit for memory loss.  I don’t believe they can do it along with chemo, so I have to wait until at least after Wed.  Then it involves 10-15 days, 5 days a week, no weekends.  I chose to make the drive to Hershey since I was happier going there.  I would expect to start a week from tomorrow.

Time For the Lawn Toys to arrie

More fun to play with the eggs!

This bad news was fortunately preceded by several days with Lucas, both babysitting and celebrating Easter.  We got to watch him collect eggs at home (the group one he only ended up with a single egg, and was completely happy.)  He enjoyed opening them more than eating them (even though he actually could EAT the ones at home, theyhe Cheerios.)  His new obsession is birds, he LOVES to watch them in the trees!

I talked about Lion King before, I wanted to put in some back stage photos.

After Cooper, we headed first to NH to visit Kevin’s dad.  He is still going strong at 93, still living in an independent home.  Then off to Portland to pick up Cheryl at the airport, it is my dad’s 90 bday and we all came in,  unfortunately  Janice was sick.  Chris got it in Maine, Cheryl and Luke developed it in PA.  Didn’t dampen any spirits, at least not those of us that avoided it!  The main event was a dinner at the Harraseeket Inn in Freeport on Saturday. I had never been there, and they were outstanding, Cory used to work there.  Food was good, service good, we had our own private room, it was great.  Really nice to see the cousins have a chance to connect more as adults.  Andy and Lucas stayed home (he isn’t a serious traveler yet, packs too heavy, Lucas, not Andy), but the rest made it.  Looking at the photo now, I should have pulled my bangs up more, why does no one tell me! !

Family Together for the 90th

Cousins reconnecting!

So the news does not continue to inspire me.  Pain management is also confused with the leg, and since blocks didn’t work, we are going the medical route.  Kevin will continue to search for trials, I will continue pursuing most reasonable options, all in the hopes that ONE of them will make a difference!

Many changes in my life

I always thought the retirement years would be great, Kevin and I could travel, we would improve our sports (or at least enjoy playing the game!), walk the dog, babysit grandkids…  THIS is not what I expected!  As a friend who also is stage IV said- I just don’t feel FUN anymore!  That is SO how I feel.  My days are spent getting up late, since I know the effort it takes to get up and I am not sure how I am going to feel.  If nausea appears, it is usually in the morning, so facing food along with 10 pills isn’t my idea of how to start the day.  Then I spend most of the day on the couch since despite a nerve block and TWO MRIs, it still hasn’t helped the leg.  I tried to walk yesterday, had to cut one loop short and almost told Kevin to get me in the car.  Afternoons are a little better, and occasionally I can run errands, and I do get to chemo about once a week which is 4 hours.  Yes, I have company sometimes, greeting cards always, emails, etc. but I miss being PART of it all!  And Kevin is left worrying about me, afraid to leave the house and constantly trying to feed/hydrate me.  I get extra hydration every chemo, and it helps, but I struggle to keep it up otherwise.  My appetite has left again, so that brief time of eating is over.  Just a daily struggle with finding what my new ‘role’ and purpose in life should be.  I clearly have not found it yet, and not sure I ever will.  The new chemo seems to give me a bit more nausea, and the breathing does seem to be struggling and without ibuprofen the leg is unbearable.  I’m not complaining, it could be so much worse, but I AM frustrated.  All along I thought I could fix it by sheer will and determination.  I am finding that is just not enough.  And not enough to handle it with the kind of optimism and grace that I would like to have.

But the daily struggle does go on.  I did get the second epidural, this time it was a bit easier, I (and they) knew what to expect, so no passing out.  Not sure what to do next as this did not work either.  I return in April and we will regroup.  I have had 4 treatments of the new chemo, almost 1/2 way until scans.  Kevin has been very proactive trying to find immunotherapy clinical trials, but often the paperwork expected is frustrating him.  They are out there, but requirement criteria is very specific and often far away.  I am so grateful he is doing that, as I could not face that kind of paperwork.  My brain capability is not what it used to be!  I have my regular appointment with Cooper next Tuesday for the brain scan, crossed fingers that it is still clear!   That is needed for most trials.

We did travel to Durham, NC to visit Jan last week.  Kevin does all the driving so it isn’t hard for me.  We had a real good time, and got to enjoy her new ‘guest room’ now that there is no roommate.  We went to Lion King Thursday night courtesy of Jan, in excellent seats, an she did some video work for an actor who gave us a backstage tour.  What a great production to tour too, they ‘store’ all of the costumes up in the eves, so the elephant costume for ex. just drops down onto the actors.  It was really interesting to see.  Jan took us to the animal rescue farm that she volunteers for and we ‘met’ the new baby sheep and pygmy goats.  They are getting lots more tenants, soon she won’t be able to handle it alone!   The difficult part for me is that usually I would be looking for projects while visiting, not happening now – thank goodness Chris is good at it, and Janice is learning what she needs to know.  Just being away for that many days though may be why this week was more of a struggle.  Just the travel effort is hard sometimes.   And off we go again, tomorrow we leave for Cheryl’s, we haven’t seen Lucas in maybe three weeks.  We will spend Easter, babysit Monday and Tuesday go to Camden for my appointment.   We will leave there and drive right to NH until Friday.  Then we leave for Maine to pick up Cheryl at the airport (Jan arriving Thurs) and we will celebrate my dad’s 90 birthday.  I come from such  long living stock, I really thought I might need the long term care insurance I got 🙂

This is an Easter DOG if you can believe it!  He loves his stuffed animals – AND his kid sided man chair!