Peace

DonnaLee passed away on Thanksgiving surrounded by our families who had gathered at our home for the holiday.  I feel like that was DonnaLee's intention.

Thank you everyone for your kind support and please know it made a difference.

My hope is that DonnaLee's open and honest communication on this blog helped others.  DonnaLee benefited from an amazing team of doctors, love and support of friends and family as well as advances in medicine to fight cancer.  Please share this recipe for success.

DonnaLee lived well and was by no means defined by her illness.

Please follow DonnaLee's example by freely sharing your feelings, helping others and living purposefully.

DonnaLee and I experienced the best from everyone during this difficult time.  As a result, my thoughts now turn to all the kindness that surrounds us and how easily expressions of love are shared.

Thank you.

Love,
Doug

Difficult News

Howdy it's Doug posting for DonnaLee.

It was a tough week and DonnaLee was placed in hospice care.

DonnaLee is at home and resting comfortably.

There will be no more doctor visits or tests/scans and the medicine has been cut to a minimum.

The decision became clear after DonnaLee went to sleep on Friday night November 11,and did not get out of bed for the whole weekend.  She lost her appetite and did not drink much.  There was some confusion and DonnaLee's cognitive abilities slipped.  The call to hospice was placed Monday night November 14 and by that Wednesday the hospice nurse and medicine arrived at our home.

I know in my heart that DonnaLee has had enough and is ready to rest. The last number of days have been peaceful and DonnaLee has been kept out of pain.

We remain humbled by everyone's love and support.  Please know that DonnaLee's success was possible because of our wonderful family and friends...thank you.

DonnaLee has consistently told me that she no regrets and has felt blessed to be able to travel and have great quality of life through most of the last six years since her diagnosis.

Love to all

Started Opdivo - So far, So Good

Last Monday, started my first infusion of Opdivo.  So far all is well and I am not having any side effects.

Also had a MRI on meningeal lower spine.  Although I didn't see the full report, Irene says everything looks fine.

Still trying to figure out how to deal with UTI.

That's all for now.

Changes and Adjustments

Hi all,

Once again it’s been a while since I posted a blog.  We’ve had some scans and tests and a lot of hard conversations that have shifted our focus.

Here’s Doug’s version with a few edits and add-ins from DonnaLee.

Last week, Sept. 12, we met with Dr. Bonomi and Irene for a brain scan and regularly scheduled visit.  The brain scan remained favorable, but DonnaLee’s day-to-day health has continued to deteriorate.  This means that the scan is not telling us the whole story and the current treatment is not working well.  The difficult part of this news was that there are really not great treatment options to try next.  We took this news and agreed to think about options for a follow-up appointment one week later.  We would also speak with a palliative care doctor regarding pain management, digestive issues and general comfort stuff to help DonnaLee.

Monday Sept. 19 we met with Dr. Bonomi and Irene and jointly decided to try a different treatment, immunotherapy.  This treatment uses the body’s own defenses to attack the cancer.  Typically, DonnaLee’s type of cancer with her specific EGFR mutation does not respond as well to this therapy as some other cancer mutations.  However, given six years and several treatment paths her cancer may have mutated more and be responsive to the treatment.  With a lack of material side effects and very little downside risk we decided to give immunotherapy a try.

Next week DonnaLee will have a scan of her lower back (in the meningeal fluid floating through the spine) to provide a base line reading similar to last week’s brain scan.  The immunotherapy is a one-hour infusion every two weeks.  In the meantime, we get an eight week break from further scans. Interim progress will be judged on tumor markers in the blood.

The palliative care doctor had many suggestions, but no concrete solutions for DonnaLee’s more nagging issues.  We are entering a period of uncertainty with the new treatment, exchanging our current slow deterioration for long odds of success.  There is a lot of “wait and see” and “day at a time.”

On a lighter note, last Saturday’s Lung Run was a great success with Team DL raising over $5,000.  We enjoyed a beautiful day for our seventh year participating in this event with about 20 other Team DL runners, walkers and supporters.  We could feel a glow of happiness for a day or two after.  We remain thankful for and humbled by everybody’s love and support.

Belated info on last doctors' reports

Once again, I apologize for a late update on recent doctors' visits.  No good excuse for the delay, other than general busy-ness (yes, I'm using that word again!) and the fact that there are no real big changes to report.

August 15, I had a CT scan on the lungs that showed stability and even some slight reduction in lesion size and number. Similar reports have come through the past few months for the head and lungs,  To me, that seems like a pretty strong argument to just keep doing what I am doing for a while.  I've decided against having the radiation treatment that I'd been discussing with Dr. Bonomi and Dr. Marwaha (radiation oncologist).

On Friday, August 12, I had an eye appointment with a new optometrist and although my eyes, seemed worse to me based on those crazy tests they do, he changed my lens prescription and lowed some of the powers of the lens adjustments.  All the other tests went well too - no signs of cataracts, macular degeneration or any other nastiness.

On Monday, August 22, I had an appointment with Dr. Angelopolous, my neurologist.  It was mostly bringing her up to date on the things that have been going on since we last met in early March (just before the seizure.)  She was glad to see the stability in the most recent reports.

The new Liftkar is working out really well and the caregiver confusion seems to have straightened out and it all is working out.

Coming up next on Monday, September 12 is a MRI to the brain and lower spine and the usual blood work and Avastin infusion. Long day!

Hope there won't be any news to report before then.  Happy Labor Day!

More Good Days than Bad Lately

Hi everyone,

I'm a couple days late on posting my latest medical results and related activities due to technical difficulties and general busy-ness (If you know a better way to spell that word, please let me know.)

The new caregiver is awesome and we are so delighted to have her.  Although I learned today that 
I will have to share her with other people I recommended her to.  I'll have a different caregiver from the same family group two days a week and the one we've been so impressed with over the last couple weeks will still work with us 3 days a week.

The Liftkar that we exchanged the previous one for is a million times better and I've been getting around the house and outside the house more often and with more ease.

The doctor's appointment last Monday at Rush had all good results.  Lungs are stable, for the most part.  Blood work improved overall and there are no new concerns.

I'm showing some slight improvement in strength and balance with physical therapy.

I'm not seeing myself standing or walking any better, but everyone else - Dr. Bonomi, Irene, Physical Therapist, Caregivers, and Doug all say so.

As always, I thank you for your interest, support and care.  This Saturday, August 20 marks 6 years since I received my diagnosis.  It has been quite a trip and I so appreciate you being there for me and taking an interest in my ride.

Caregivers and Liftchairs

Hi folks,

Just want to thank those of you looking for caregiver contacts on my behalf. We started the interview process on Thursday, July 28, but the first candidate was not a good fit.   We interviewed a very experienced and nice mother and her two adult daughters on Saturday, July 30th and they fit the bill very well.  One of the three of them will be here for five 12-hour days each week. (In my prior post, I mentioned that we are looking for a new caregiver for at least 2 days and possibly 5 days a week.)

We hired them on the spot.

I really appreciate your help in finding resources.

Second item is that the Liftkar that we purchased a couple weeks ago is going to be replaced by the vendor, 101 Mobility with a different version that has a chair built in instead of attaching to a wheelchair.  We think will be easier to use on many levels and hopefully, will allow me greater mobility and access to the outside.

Once again, thanks to everyone reading this blog for their concern and support.

All the best,

DonnaLee

Difficult Decisions

I know it's been awhile again since I posted on this blog, but so many things have been uncertain that I didn't want to post anything if it might not be happening for certain.

On July 18, I had a MRI scan to the brain and everything looked stable, even some small reduction in tumor size and number.  So good news there.  It looks like I will be continuing with the Tarceva and the Tagresso, taking one of each on alternate days. I had to go back to Rush for an Avastin infusion the following Monday, July 25.  This procedure is only of half-hour of actual infusing of the Avastin, but managed to keep us at the hospital from 11:30 to 3:00 with rush hour on both the drive there and back.

Dr. Bonomi, Dr. Marwaha (radiology oncologist) and I have been going round and round in discussions about radiating my legs.  Dr. B thinks it is my best and only chance of ever walking again.   Dr. M is willing to do this radiation if I want it, but doesn't seem that enthused.  The chances of actually having success in being able to walk again are unclear, but seem rather low. The side effects are potentially unpleasant (e.g. diarrhea) and the area Dr. B is thinking about radiating is rather large. Finally, the radiation would be daily for two business weeks.

If you can't tell, I am leaning against going through with it.  I really want to walk again, but I just don't feel comfortable with this procedure. This is really a tough decision.  I feel like I may not be able to withstand any more health issues or injuries, but don't know which way to go to avoid them.

The other news for this period is that we purchased something called a Liftkar that automatically carries me up and down stair steps.  Here is a link to a demonstration:  http://chicago.101mobility.com/mobility-lifter-liftkar.php .  The version we purchased proved to be less than was advertised.  When the rep demonstrated how to use the chair at our house, he made it look so easy to connect the wheelchair to the stair lift and go up and down the stairs.  In fact, the four caregivers who attended the demonstration and training - Doug, Abby, mother-in-law Pat and father-in-law Ed put in a lot of time practicing just with the chair (no one sitting in it) and still feel a bit unsure about maneuvering it.  It is also a tight squeeze to try and get it around the corner on the stairs leading to the garage.  We were also having trouble with getting the wheelchair over the threshhold of  the front door (but were able to obtain a ramp to solve that problem).  The sales rep came back to the house yesterday and he agreed to my proposal to exchange the version of the stair lift we have for a different version that has a built-in chair instead of attaching to a wheelchair. This eliminates the complexity of attaching the wheelchair to the Liftkar and slims down the size of the machine to make it easier to maneuver and manage that corner of the stairs.

My mother-in-law, who is my caregiver on Mondays and Tuesdays has not been comfortable using the Liftkar and we had a little mishap on Tuesday that really scared her, although nobody was in danger of getting hurt.  We'd had a rough day all around and it became apparent to both of us that she wasn't going to be able to continue being my caregiver much longer.  We are both okay with this and there are no hard feelings.

So now we are looking for a new caregiver for at least 2 days a week.  If anyone out there has references for strong, reliable, proficient and emotionally supportive caregivers, please send their contact information to me.

That's all for now!

Independence Day?

No sooner do I send a blog update earlier this week than I find myself at the ER again on Thursday. This time for a very red, very swollen and painful left thumb.

They did an X-ray, gave me some high-powered antibiotics and said we should keep an eye on it. That night back at home, I was in a lot of pain with the entire left hand swollen like a "hulk smash" fist.  I knew I had to go back to the hospital and would probably have to stay for a while.  After a CT and an ultrasound on the hand, they determined it was cellulitis and put me on IV antibiotics twice a day.    I didn't get released from the hospital until this afternoon  because, although the treatment is working and there has been a huge improvement, there is still some swelling.  I had many different doctors and the one charged with releasing me didn't want me to leave the hospital until the swelling was completely gone. There are no oral antibiotics I can take with my penicillin allergy that equate to the IV antibiotic I am getting twice a day at the hospital.  However, each time we spoke to this doctor, he said the infectious disease doctor could approve a home visiting nurse to administer the IV antibiotic twice a day or he could identify an oral antibiotic that I could take, even though it wouldn't work as well as the IV.   It took until today for the ID doctor to get to us and stay with us long enough to approve an oral antibiotic for me to take that he felt wouldn't interfere with my allergy.   (He is a bit skeptical about penicillin allergies and thinks they can go away after a long time.  He is thinking about doing a study about this.)

The 4th of July holiday probably prolonged our hospital stay with a lighter staff.  However, my hospital room had a window that directly overlooked a beautiful fireworks display, which made it kind of special. 

  

It has been a good time to stay in bed and rest my lifeless legs.  They feel a little stronger and I can feel the ground under my feet but they still aren't moving or balancing well.  We are soon to be at a point where we will have to make a major decision about health care workers and devices that will increase my ability to handle the stairs. I worked with some Physical Therapy people today who introduced me to a "walker platform attachment" for resting my weakened left arm in a little tray on the top left of the walker. It instantly helped me walk with the walker again, although the legs still are very weak.   Mom and Dad Pawlowski have done some research for us on a few different models of automatic stair chairs that only require one person to pull up and down stairs without being attached to the stair.  And  I'm sure there are other options to explore.

We had someone demo one version of a stair chair with me in our house and it seemed to work well. Another one is set to demo their product tomorrow.  We will continue our research on all the options we have and then make our best possible decision..

Never dull!

The Long and the Short of last Monday's Rush Visit

Hi everyone,

Here’s the latest news from my magical medical crazy cancer tour.

This past Monday, June 27, I was scheduled for an Avastin infusion for 30 minutes at Rush.  Supposedly, a relative short visit.  Somehow that elongated into 8 hours in the hospital.  I arrived for blood work at 10:00 a.m. and left the hospital at 6:00 p.m.

Here's how the time stretched out:

I have to have blood work and a urine sample done when I first arrive so they can analyze the results before they start me on treatments. The staff was running late.

Then I had to see Dr. Bonomi after he reviewed the blood work in order to get approval to make up the Avastin infusion mixture.  And we all know that appointments with him always take a lot longer than planned.  For this particular appointment, he was more concerned with my spinal issues than earlier visits and had someone schedule another consultation later that day with Dr. Marwaha, the radiation oncologist, after I finished the Avastin infusion.  This was a big surprise and really threw the day off course since nothing really changed from 11 days earlier when I had the spinal MRI and both doctors had a consultation based on that MRI.  I couldn't finish with Dr. Bonomi until Dr. Marwaha's resident came over to agree to set up the appointment with Dr. Marwaha for later in the day.

I was supposed to have my infusion done by 4:00 originally.   They got a late start. It didn't end until 5:00.  Then we were in Dr. Marwaha's office until 6:00 p.m.  All for naught.  Nothing had substantially changed in my condition and the reasons not to radiate the legs remain the same:  There is no concentrated place of cancer in the spine where they can focus the radiation; I'd have to be off both the Tarceva and Tagrisso during the whole 10-day course of treatment; and I'd have to be completely off of the Avastin for some time before having radiation because they are not always compatible and could be dangerous if taken together.

My next appointment is in three weeks, July 18, and will include an MRI to the brain and another Avastin infusion in addition to blood work and appointments with Doctor Bonomi and Dr. Marwaha.  Another very long day at the hospital.  Ugh!

Meanwhile, I continue to have my battles with my gastro-intestinal system.  As Roseanne Rosanna-Danna would say, "If it's not one thing, it's another."

I continue to get physical therapy twice a week for 45 minutes at a time.  I now have leg braces to help strengthen my legs, but so far, my legs seem to only be getting weaker. I can’t pull myself up and down the stairs without one or two people physically moving each foot up/down each step.  Hopefully, the PT will help me get stronger, but it sure isn’t happening very fast!

Hopefully, I will have no further news until the July 18 visit.

Coming up to speed with what's been going on

Hi everyone,

I know it has been a while since I shared a detailed medical update, but I’ll bring you all up to speed now on what’s been going on for the last couple months.

I’ll start with the visit to Rush in May.   I had a CAT scan to the lungs that showed stability and a little bit of reduction in the number and size of lesions in the cancer in the lungs.  That was good news, but my focus was really on the continual degradation of my legs and my inability to feel my left leg and foot and the start of losing sensation in the right foot too.  The only solution they had for me was that hopefully the Tarceva would reduce the cancer in the meningeal lining of the lower spine and that I should keep doing the physical therapy to make the muscles and nerves rebuild.  This was not a satisfying answer for me.

I had a consultation with a radiation oncologist to find out if radiation to my legs would help them heal.  Essentially, he said that radiation would not likely offer improvement, but would be something to consider to prevent the legs from getting worse.  We decided to keep radiation on the backburner among our treatment options.

Dr. Bonomi decided to have me start getting an Avastin infusion as a booster for the Tarceva.  Avastin isn’t a chemotherapy drug, but works with chemo drugs by cutting off the blood supply to the lung cancer cell and starving the cell.  I have only had two infusions so far so it’s too soon to tell if it is doing any good.  However, the tumor markers in my blood jumped significantly, which the doctor suspects is a reaction to the Avastin. 

In early May, I had a fall when I lost my balance on my walker.  At the time, everything felt and looked fine – no damage done.  But a few days later my left calf and shin and both feet swelled up to the point the skin was purple and blue and the tissue underneath it was rock hard with no give at all.  While I was at physical therapy later on, the doctor who works there looked at my feet and legs and sent me to the emergency room to have them x-rayed to make sure there was no fracture or tear.  The good news is there wasn’t – just a sub dermal hematoma (deep bruise).  The better news is there was no sign of a blood clot, which I’d acquired while in the hospital in March.  It’s the blood thinner I’ve been on for the blood clot that caused the delayed reaction of the bruising to the fall.  In spite of the blood clot being gone, I still need to get the daily blood thinner shots for another few months to make sure the clots don’t come back.

For this month, my feet have gotten progressively worse and last week, it took Doug and both of his parents to lift my feet from step to step going up the stairs.  I can’t feel my feet at all and have to be careful not to let one step on top of the other or trip as the tips of my toes get stuck on the floor. I got braces for both of my legs as part of PT to give me more strength and stability.  I think they make a little difference, but not a lot.  My “daytime” physical therapy finished yesterday. From now on, I am at “outpatient” physical therapy twice a week for 45 minutes each visit, still with the same PT provider organization. 

In spite of the outward problems I am having with my feet and legs, the MRI scan I had on Thursday of this past week showed stability in the meningeal lining of the lower spine and may even indicate a slight improvement in the amount of lesions there. Dr. Maurerwa, the radiation oncologist, sat in with us to look at the results of the MRI to the spine and we all once again agreed it wasn’t the right time to do radiation to the legs.  Dr. Bonomi decided it was time to add Tagrisso to the cancer treatment mix along with the Tarceva.  The idea behind this is that the particular medications in Tarceva work well for the mutations in the brain and the spine.  The Tagrisso medication has a lot of success with the lungs and other areas where the cancer has metastasized.  The hope is that, between these two drugs, all the cancer in my body will be kept under control.  It’s a new frontier in the cancer landscape so we are just experimenting to see what will work.

The fact that we don’t have a pre-defined path for treatment is disconcerting to me.  But I am glad the medical staff is willing to try new things to help me get better.

So that’s what’s been going on with me.  It has been a very challenging time and there has been some rough news to process. I’ve been given little hope by some medical practitioners that I will walk again.  But Dr. Bonomi still keeps that as a goal.  At least I got that going for me.

Latest CAT scan results and medications

I had an appoint for a CAT scan to the lungs, blood work and consultation with Irene and Dr. Bonomi this past Monday, April 25.

The scan showed stability and even a slight reduction of size of the nodules in the chest.

There were no scans for the brain and spine - that will occur on May 23rd - so no new information available at this time on that.

Dr. B. wants me to add Avastin to my medical regimen.  He thinks it might be a boost to the Tarceva and make it more effective. Unfortunately, it is delivered via infusion so will add even more time for me in the hospital, which is already a long day every three weeks.  But if it can make things get better, it's worth it.

Dr. B strongly supports the Rehabilitation Therapy work I'm doing 3 hours 3 days a week.  He thinks the combination of Tarceva and Rehabilitation is my best bet for a recovery.  I sure hope this will work.  I am feeling more challenged by the lack of independent mobility, strength and stability than anything I have encountered so far throughout my dealings with cancer.

Radiation Consultation, Physical Therapy, and Wooden Railings

Yesterday, on Dr. Bonomi’s recommendation, I had a consulting appointment with Dr. Gaura Marwha, a radiation oncologist, to get his opinion of whether radiation to the Cauda Aquina (Horse’s Tail) would remove or reduce the numbness I feel in my left leg and foot.  After checking my reflexes and hearing my history with the cancer dispersing through the meningeal lining of the brain and spine, his recommendation is to just be watchful and stay on top of the MRIs.  He said that the best the radiation would be able to do is prevent the cancer in the meningeal lining from getting worse.  He thinks that the Tarceva and the physical therapy are the best hope for the numbness to go away and the balance and strength to get better.  I was not surprised by this conclusion. 

I think I have found a good way to handle the rigors of the physical therapy as of today.  I had been pushing hard to do the exercises quickly and efficiently over the past couple of weeks and I’ve wiped myself out to total exhaustion.  Today, I took a different approach.  I was deliberately slow and took several rest breaks throughout the 3 hour therapy session.  I was able to stay fairly fresh and complete all the exercises the therapists wanted me to do. 

Since 10:00 a.m., we’ve had a couple very skilled men putting in railings for me to help me go up and down the stairs.  They just left here at 7:00 putting finishing touches on the railings.  They’ve come up with some really great solutions.  You’ve never seen so many wooden railings in a house!  But they are beautiful wood and the house still looks good.

Overall, it seems that things continue to get better.

Slow but steady progress

On Monday, April 4, I had blood work and an appointment with Dr. Bonomi, my oncologist, and Irene my oncology nurse.  Both of them are very happy with my progress and think I am doing really well.  They feel that I am a lot more alert and acute than I had been a couple weeks ago. They are also satisfied with the blood work results.

I am not at all satisfied.  My balance is still way off and I am dependent on others to stabilize.  I am using a walker to get around.  Dr. B and Irene see this dissatisfaction as exactly the proof that I will get better.  I hope they are right, but I can't get back to normal quickly enough.

Doug noticed that in the two instances where I had a seizure, it was five months after the Tarceva was stopped. Dr B agreed to a steady dose of Tarceva that will be less irritating to my stomach.  We've also cut down on the steroids to two a day.

Dr. Bonomi also recommended I consult with Dr. Gaura Marwhaa about trying radiation on theCauda Equina (Horse's Tail) at the base of the spine.Like the meningial lining in the brain, the spine has a meningial lining that has been affected by cancer.  It is possible that that is what is causing the numbness to my left leg and foot.  I have a consultation set up for this Tuesday, April 11 with Dr. Marwhaa.  It will be interesting to see what he has to say.

Seizures and needles and pills,Oh My!

On Monday, March 7, I had a seizure that sent me to the hospital for a couple of weeks. It was disorienting and I had trouble with space and time as a result of being given steroids. I was also given Keppra,Tarceva and Pepsid.

I was finally released to go home last Friday, March 25.  I am having the bathrooms retrofitted and partcipating in  going to occupational therapy to build strength and balance. I have a blood clot as a result of being in the hospital so long.  I have to take blood thinner shots to the stomach as a result.

In spite of the difficult times, I am just so happy to be home.

Not a lot to report

I had my check-up appointment with my oncology nurse, Irene (Dr. B wasn't in that day) and the usual blood work panel.  No other scans or tests this trip.

The blood work looked good overall.  Irene thinks I am doing great.

My foot and calf continue to be numb and seem to be getting weaker.  The outer toes on the right foot have also become numb.  I have worked with physical therapists in both Northbrook, IL and Scottsdale, AZ to address this problem.  I am working with both of them, obviously the one in Arizona is just occasional phone call or email, but I like his ideas and approach even though it is a little different than the local therapist.  My hope is that they will collaborate to do what's best for me.

I'm doing my PT exercises daily and seeing the local PT twice a week.  Hopefully, this will improve things for me.  Crossing fingers! 

Good Results (but could be better...)

Hi everyone,

Today I had the works done at Rush – MRI to brain and to lower spine, CAT to lungs, blood work and Dr. Bonomi consultation.

Dr. B is very happy with the results, which are essentially stable from the prior scan with a few minor decreases in lesions in the lungs.  The tumor markers remain at rock bottom.  This is good news, but I had been hoping for more progress.  Dr. B thinks this may be as good as it gets, but that it is very good.

There is still the growth in the lower spine, which they can’t determine exactly what is going on but is likely the cause of the numbness in my left foot and calf and the weakness I’ve been feeling in both legs.  Dr. B once again thinks this might be how things are going to remain.  I’m very unhappy about this.  He suggested I talk to my neurosurgeon and see if she has any ideas and also see if my physical therapist (who is currently helping me heal from a frozen shoulder – not cancer related) might be able to identify ways for the legs to feel better.

I will try both of those things.

My next appointment will be February 22 and will only include blood work and a checkup with Irene, my oncology nurse. 

Hope you are all well and having a good start to the new year.