Journal

Journal entry by Meg Howard

 

Steve’s Journey Ends – Steve passed       L

Tuesday, May 22, 2018   ~ 10:45pm.    

I hadn’t posted the last update yet . . . I have been spending as much time as possible with Steve.  Sunday was our monthly Family Dinner and all the “girls” were here as usual with their families and we enjoyed spending time together. When Steve walked up the stairs, he was unable to catch his breath and his heart was racing. For about 10 minutes, we turned up the oxygen and used a cold cloth on his neck. He was finally able to stabilize his breathing and his heart rate.

This episode repeated on Monday evening during dinner.

Then, Tuesday, during ‘Deadliest Catch’, it happened again. This time, we couldn’t.

I am so sorry . . . .I wish I could call each one of you individually to talk and answer any questions. . . and let you know that Steve read the website and was very touched by all of your messages. He was ready to go home and accepted God’s plan for him, whatever that would be.

Steve's funeral arrangements are as follows: Visitation on Tuesday, May 29th from 2-8pm at the Elton Black Funeral Home, 3295 E. Highland Road, Highland, MI.   and Wednesday May 30, 2018 at Church of the Holy Spirit, 3700 Harvey Lake Road in Highland from 10:00am until the time of service at 11:00am.   A Mass of the Resurrection will be held at 11:00am.   Interment at Holy Sepulchre Cemetery.   And arrangements are already posted on the Elton Black website at: https://www.dignitymemorial.com/obituaries/highland-mi/steven-howard-7859108 DONATIONS

www.Caringbridge.org      or     Church of the Holy Spirit

 

Steve’s Journey Update – Steve at Home

Journal entry by Meg Howard — May 22, 2018

If you want a shorter version of these updates, just read the bold and underlined words.

Since Steve’s airways were reconstructed in early April, Steve’s breathing had been stable. . . . until it wasn’t. The week before his PET scan, Steve said that he was struggling more to get air. We went for his PET scan on Monday, May 14, as planned. The next morning, we showed up for his follow up bronchoscopy, curious to see if anything changed to cause the breathing difficulties. The doctor found that the left side bronchial stent had collapsed and was indeed blocking airflow into his lung. He said that he had a plan to attempt a correction the next day in the surgical suite. 

Before the surgery, the doctor told us that this would be a very difficult procedure to perform and was rather risky. His intent was to use a balloon procedure to open up the stent and put another stent inside it, like a telescope.  And the fistula (opening) had gotten bigger. When he attempted this, the stent expanded into the fistula. There is no structure to the airway any longer; it has been destroyed by the cancer. The tissue is more like raw hamburger, unable to be stitched together. Old residual tumor is brittle, also not able to be stitched or to hold any structure. The surgeon was unable to do anything. And there is possibly some connection between the airway and the esophagus. The right airway stent is still intact and is providing air to the right upper lobe, but cancer is also infiltrating into the lung.

At my last update, he was using oxygen mostly at night. Now, he is using it all the time. He is much more fatigued, he gets short of breath very easily, but his A-fib remains under control.  

We have been talking about end-of-life issues, such as how he wants me to handle certain assets, teaching me how to do maintenance* on household items, talking about the memories, getting his affairs in order (reviewing the Will, etc.) and remembering relationships that we cherish.  

·         * I removed and cleaned the electronic furnace filters and reinstalled them myself today!

 

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Journal entry by Meg Howard

If you want a short version of these updates, just read the bold and underlined words.

Steve has been home since April 9th.  His throat has healed and his appetite is back so we are trying to add some weight back on him. (And as a dutiful wife, I also am adding weight right along with him.)

Last week, we went to the gun range for about an hour. The week before that, after one of his many doctor appointments, he went to Meijer with me and pushed the cart for about an hour. He gets winded very easily, but still tries to do a little something everyday . . . sometimes that little something is a nap!   ; )     Right now, he is making pudding.

He uses oxygen at night and only once in a while, he will put it on for a few minutes to recover if he has gotten winded from stressing himself . . . like after he helped me get my motorcycle gassed up and started. (I just sold it to my sister.)

His A-Fib seems to be under control. His cardiologist said that when he was struggling to get breath – like when his airway stents got pushed out of place – then his heart tries to compensate and that’s when it goes into A-fib. So as we keep his breathing stable, his A-fib remains under control.

Next week, he will get another PET scan and a follow up bronchoscopy to see if the stents are still in place. That will possibly tell us whether or not the immunotherapy is working. The expectation of Opdivo is that it will stop the growth of the cancer, but not shrink it, thereby extending his life. We don’t know how long that will be: only God knows.

Steve has accepted God’s will, whatever that is. We are still fighting the fight. We are grateful to have such a great family and community of friends that continue to support us with love, prayer and, sometimes, even chores. We keep all the pictures, cards and well wishes taped on the walls of his TV room. (We call it his cave.) He sees my 5th grade catechist class that prayed a rosary for him. He sees the smiley faces drawn by the Stephen Ministers sent to him on a card. He feels the love sent to him by way of prayers and Masses being said for him. He reads the comments left for him by people visiting the Caring Bridge website. . . and of course, the colorful pictures drawn for him by the grandkids. He is surrounded by love!

I'll update again when we get more information next week.
    - Meg

Journal entry by Meg Howard

First, I thought I updated this website last week to include Easter and Easter week. . . . Apparently I forgot to push the “submit” button. I just rectified that.

Steve was able to get his medi-port placed on Sunday when a surgical team came in for another patient’s emergency procedure and took Steve while they were there.

That went well and Steve came home late Monday. He is fatigued, short of breath and was sent home with oxygen. We hope this is temporary while he heals. He is getting his appetite back and I think he is putting back on some weight.

We saw his oncologist yesterday, the captain of Steve’s team, and he said that we will stay the course and wait for the immunotherapy to work.

Tomorrow Steve gets his 3rd infusion of the immunotherapy, Opdivo, and they will access his new port.

We are both glad to be home and catch up on some much needed rest and chores.

   - Meg

Journal entry by Meg Howard

Saturday, March 24th, Steve did get out of Henry Ford Hospital on Maple Rd. in West Bloomfield (we call it MapleFord) in time to attend The Little Mermaid play where our grandson, Gavin, had several roles. What fun with all 3 of Steve’s girls and some grandkids. (Picture in Gallery of photos.)

Steve had been breathing hard, coughing and was very fatigued all week at home. Easter Sunday, we again had even more fun with ~24 family members and lots of great food, thanks to their generosity and hard work. We are so happy and grateful for the joy that our family provides us. We are all feeling the need to be close and express our love for one another since we heard last Thursday of the sudden passing of our niece’s husband who was only 35 years old. 

On Monday, April 2nd, Steve was to have his med port installed at MapleFord. But first, he had a cardiologist appointment scheduled to be sure his heart was okay to proceed. Again, an EKG was done and found Steve was back in A-fib! So, again, they wheeled him to the E.R.  An X-Ray showed that there may be an infection in the lung. A bronchoscopy* was ordered; these are done only at the downtown location so they transported Steve by ambulance and put him in ICU. Tuesday, a CT scan and bronchoscopy showed that one of the previous stents was cocked and not connected to the stent in the main airway.

Late Wednesday, the head of the bronchoscopy department, basically did a surgical reconstruction of Steve’s main airways. He was able to also carve out some of the old tumor blockage in the lower right lung airway and was able to open the lower 2 lobes! We assumed that was all dead for the last 5 years but the doctor said that there was some viable capacity! We will see if this provides any more flow over the next few weeks.

Steve is currently still at Henry Ford Hospital downtown. He is out of ICU, not in A-fib and we expect to have his port installed on Monday. If all goes well, he should be able to come home soon after that.

Remember the PET scan that Steve had done on March 19th?   It revealed that the cancer is now showing in his adrenal glands and lymph nodes.

This is such a roller-coaster of emotions. Some days I feel that we may be winning the race, but many days, I think the cancer is winning. Sometimes, hour by hour, I go from optimism to discouragement and back again. Steve has lost over 40 pounds and he looks like he is battling cancer. I have faith in God, but I also have confidence and acceptance that our lives are about His will, not ours.
God hears our prayers and we are comforted by them and appreciate all of the love that you all send our way.

Thank you and God bless!

Sincerely,     

- Meg   

 

* Bronchoscopy is a procedure that looks inside the lung airways. It involves inserting a bronchoscope tube, with its light and small camera, through your nose or mouth, down your throat into your trachea, or windpipe, and to the bronchi and bronchioles of your lungs

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Journal entry by Meg Howard

Journal entry by Meg Howard — Mar 23, 2018

Steve has tolerated his immunotherapy so far. However. . . . 

Steve went into Henry Ford Hospital in West Bloomfield for a baseline / restaging PET scan and for a cardiologist appointment immediately following. He was very winded after the PET and said he got hot inside the scanner. Upon arrival, the cardiologist, as a matter of course, did an EKG and found Steve was back in A-fib! So, again, they wheeled him to the E.R. We stayed there for about 5 hours before a bed was available on the “step-down” floor (a step down from ICU).   (His 1st deal with A-fib was Feb.21st.)

He has been here (we call it "MapleFord") for 5 nights and his heart rate is better but is still going in and out of A-fib. They continue to monitor him and tweak his medications. They are limited with what medications they can use because of the lung cancer and immunotherapy. We have postponed the surgery to install his port until Monday, April 2nd. 

They take really good care of him here and the accommodations are so much better than the downtown facility. 

We hope to get out tomorrow and - if he feels well enough - attend his grandson's play at Marian High School with Brother Rice and Marian students.

Steve feels "lousy" and is getting frustrated with his a-fib; it keeps him winded and he has no capacity to do anything. These days, it seems when we go to any doctor appointment or procedure, we pack an overnight suitcase.

More to come . . . 

The Wife and Handler     - Meg    ;)

Journal entry by Meg Howard

We met with Steve’s Oncologist. We have a plan:
Steve gets his first immunotherapy (Opdivo) on Friday.  We will watch him carefully for adverse reactions or side effects.
Future infusions will be every 2 weeks.
He gets a port installed on Wednesday, March 21, after his first infusion (we didn’t want to wait for the port since the infusion can be done as an IV into his arm).
We are proceeding with caution as there is potential for his immune system to attack the wrong tissue.

Steve is still recovering from his surgery last Wednesday. He continues his daily breathing treatments and that helps clear up his airways. He is still fatigued and weak.

Thank you all for your well wishes and prayers. We really need them and appreciate them. May God bless you all!
  Sincerely,    
   Meg

Journal entry by Meg Howard

[December 3, 2013 last chemo treatment     October 15, 2014 last radiation]

Since about June of 2014, we knew that Steve was free of lung cancer. Since then he has continued to get stronger  . . . until recently. . . .

September 2017

In September of 2017, Steve had a cough and congestion. He figured (hoped) it was fall allergies or bronchitis.

January 2018

We met with Steve’s oncologist mid-November, 2017. Steve was able to get his PET scan on January 9, 2018. Steve had been feeling fatigued and was losing weight. The PET scan results confirmed what we had suspected by now . . . the cancer tumor was back.

Steve went in January 18 to have the tumor debulked and open his airways.

Steve’s case was presented to the tumor board who recommended the treatment plan include (the new) immunotherapy drug (Opdivo).

February 2018

Steve went in for his follow-up bronchoscopy on February 21st, to see if the tumor had grown. As soon as he was hooked up to the cardiac monitor, they saw he was in A-Fib*. This delayed the procedure for about 2 more weeks while they got this under control.

March 2018

On Monday, March 5, again the physician scoped his airways and saw that the tumor had grown back quite a bit. The physician rescheduled him for a more serious procedure in the surgical suite (Wednesday, March 7, 2018) for another debulking and probably a stent in his airways.

We expect to start radiation and immunotherapy next week and hope this will attack the tumor faster than it can grow.

Thank you for your continued prayers - again!

    - Meg,   The Wife

Journal entry by Meg Howard

This will be my final update on Steve. . . unless there are new developments, of course.

I know it has been a long time since my last update . . . but honestly there hasn't been much to report. Steve's last chemo therapy was over year ago. And his last radiation treatment was on October 15, 2014 – more than 4 months ago. He has been mostly resting and recovering . . . .   sleeping a lot.

Steve's latest PET scan on February 23, 2015 reports his treatments  been very effective and results have been good. The doctors are very pleased! Steve's cancer has very little, if any, activity. He will never be "cured”; but no further treatment is necessary! We (his medical team) will continue to monitor him for any activity for the rest of his life. The intervals between exams and tests are getting longer. [His next PET scan is not for another 6 months.] Steve can live with this cancer for a long time!

Steve's latest blood work shows he is no longer immune compromised: his white blood count is normal. And he is no longer anemic: his red blood cell count is back into the normal range!

Steve has discontinued 2 of his medications (Zoloft and Zocor) 2 weeks ago and he already has more energy. So for the near future, he will continue to get stronger and gain more energy with plans to get back to motorcycle rides and yard work. (And hopefully, a few of those ‘honey-do’ items.)

I know we have expressed our appreciation before but we want you all to know how much your prayers and support have truly meant to us! We know that God listened to your calls, and was glad to hear from you. We were not sure – several times – whether or not Steve was going to travel through the portal to the other side or not. Or as a phrase my sister uses, ‘he was circling the drain’. But thank you God for letting me keep him and listening to our prayers!

On St. Patrick's Day, Steve had his chemo port successfully removed! We feel like we are closing out this chapter and turning the page to begin another.

Taken from the letter of St. Paul to the Ephesians 3, vs.16-21. . . . . .

I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge - that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

 PS. From Steve: I'm growing stronger every week. Started to plan activities and work around the homestead. Started making lists of things to do. I haven't done this in years. My mind is spinning; I want to do so much! Most of all I want to thank each and every one for the prayers and good wishes that pulled me through this time in my life. If anyone wants to know what a near-death experience is don't hesitate to ask. I like to talk about it.   

       God's Peace.  Steve 

 

God bless you all!

- Meg & Steve Howard

Journal entry by Meg Howard

Steve has been through a lot this past year and he didn't think he would make it to last Christmas. And now he thinks he will live a long time!! He got a very good report from his last PET scan. 

He will undergo a little more radiation for one lymph node; other than that, he has no cancer anywhere else! His lungs and heart are all clear of cancer!! He is feeling much better and is almost not anemic anymore! 

(Hemoglobin is 13.1; normal range is 13.5 – 17.0) His hair is back, he looks good and does more and more each day!

We praise God for his healing and thank you all for such great support and prayers.


Journal entry by Meg Howard

Steve Update – March 24, 2014 In recovery; just observation!

The short version . . .

Steve has had no (chemo nor radiation) treatments for the last 7 weeks and will not get any over the next 12 weeks! Such a nice reprieve! After the next PET scan in July, we will know even more . . . and what may be next, if anything further, needs to be done.

We believe he beat this! Praise God!


___________________________________________________
CT Scan
Last Monday, March 17th, Steve had a CT scan. Then on Monday, March 24th, we visited the Oncologist, who said he reads the scan as “stability.” The scan shows us “no cause for concern.” 
Steve asked if we had “killed it?” Dr. Kuriakose said “I honestly don’t know. Only time will tell.” ( . . . and a PET scan.).
Steve asked, “How big is the tumor?” Dr. K. said that the CT scan shows “collapsed consolidation of the lung and a lot of scar tissue.” With a CT scan we cannot distinguish which is cancer/tumor and which is scarred or dead tissue. A PET scan will show us more specifically which is which. 
Dr. K. said that he was “very happy!” Early on he wasn't even sure if Steve should be treated at all because of all that he had gone through – with the almost fatal blood infection and such weakness. That is why he started with only palliative care. But as Steve tolerated and responded to the treatments, he wanted to continue more aggressively – with careful monitoring – so as to not kill the patient while trying to kill the cancer. 
Anemic & Tired Still
In the meantime, the Chemo and Radiation continue to work and Steve’s body can continue to recover. Time away from treatment will also help with his Anemia. He is holding at 9.5 Hg since early February so he continues to be tired but is not losing any more red blood cells than he is making.
Tuesday, Steve got a TDAP (Tetanus, Diphtheria and Pertussis) vaccination booster. It has made him real tired today: a normal reaction. Next, his Primary Care Physician is now back to looking at some things that have been put on the back-burner for the last year, like cholesterol, PSA and testosterone levels, and maybe get the Shingles vaccine.
Hair, Chores
Steve’s hair is coming back. He currently has a Matt Lauer kind-of look. His nose hair, facial and ear hair, of course, are also returning.
He can drive himself around and pick up groceries now and then. He even takes out the garbage! He is slowly getting out of his man-cave more and more often. 
Next Steps
We will continue to observe Steve over the next 12 weeks as the Chemo and Radiation continue to cook. . . with Labs taken every 6 weeks. Then, Steve will get a PET scan around the end of July.
Steve’s weight is now a healthy 179 pounds. He will start to focus (yeah, right!) on building muscle (instead of just gaining weight). If Steve needs no more Chemo after about 6 months, then he can have his Chemo port removed. (It pokes Steve in the neck and is a bit uncomfortable.)
Steve has had no (chemo nor radiation) treatments for the last 7 weeks and will not get any over the next 12 weeks. Such a nice reprieve! After the next PET scan, we will know even more and what next, if anything further, needs to be done.

He (and I) are so grateful for so many friends and family that has demonstrated so much faith, prayer and care for him (and me) to get us through the last year! There was a time that Steve didn't think he would make it to Christmas this past year. We are so delighted for another second chance! Perhaps we will celebrate Steve’s 60th birthday with a party on the 4th of July! 
God bless you all!

Journal entry by Meg Howard

This morning Steve was sitting in a chair! And they put in the valve so that he can speak through his trachea without having to touch it.

(He talks a lot but is still in somewhat of a dream world.)

About 6pm they transferred him to a regular room in F-2: a pulmonary section.

Tomorrow he will have a swallow test done. If he passes, he can start to eat "pleasure" foods, like coffee or jello! Most of his nutrition will come from his feeding tube.

After he is off IV antibiotics, they will do a CT scan (about Friday) so they can stage the cancer.

The plan is to release him to a rehab facility to continue building his strength and physical therapy.

Your prayers are working and I read him your messages when he is alert. He is very touched by all of the prayers and love being sent his way!

God bless you all! - Meg

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Steve’s Story

Site created on April 11, 2013

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support, prayers and words of hope and encouragement. PLEASE PROCEED TO THE JOURNAL TAB or scroll down to follow along with updates on this journey.

Steve has Stage IV Lung Cancer. 

The story begins. . .Steve has Rheumatoid Arthritis, an autoimmune disease that allows the body to attack its own joints and organs.

In Dec., 2012 we suspected Lymphoma because of Steve's chronic fatigue, weight loss and use of immune suppressing drugs.

January 2013, he underwent a lymph node biopsy (thoracotomy, not arthroscopically) confirmed no Lymphoma.

Yet, major fatigue persisted.

By March 2013, he was sleeping 20 hours a day and confused. Tuesday, 3/19 white blood cell count at 37,000.

At DMC Huron Valley Hosp. ER, X-Rays showed right lung infected AND blood infection.

3/22/13 bronchoscopy to flush right lung; discovered blockage in airway. Biopsy confirmed Non-Small Cell Carcinoma = cancer.

Suggested treatment: surgically remove the lower 2/3 of his lung. He would not have survived the surgery.

Steve was put on vent because of mucous blocking his airway. He is VERY WEAK from the infection Actinomycosis; we postponed surgery.

4/4/13 we took him to Henry Ford Hospital, who concluded the same. Eventually was able to come off the ventilator and breathe on his own.

4/10/13 Steve must be stronger to survive surgery. He came home after several weeks at a specialty hospital to help him to walk again.

After visiting Oncologist, diagnosis: Stage 4 Lung Cancer . . incurable. We took a Bucket List trip to Disney World in July with all 4 grand-kids and Steve's daughters.

After returning, Steve started chemo & radiation treatments. Only palliative at first. He tolerated treatments pretty well and the cancer responded - shrinking. 

MARCH 2014. . . 

Steve has gone through several courses of chemo and radiation treatments since August 2013.

As of March, 2014, he is doing really well!

PRAISE GOD. . . . we believe he beat this!

4 years cancer free. . . then. . . 

January, 2018 . . . the cancer has returned.



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