Journal

Journal entry by Joan Stromberg

Just wanted to send an update since it has been about six weeks since Bob's procedure. He's been on disability since that time. We had a wonderful Christmas celebration with everyone a few days before Christmas. Some of the adult children were not at home on Christmas day, but overall, the season was very joyful. Joe and his wife, Elise, traveled to her family in Philadelphia. Maggie spent the time first at her boyfriend's house in Iowa and then traveled to the Holy Land with them on a pilgrimage. 

The holidays did prove challenging in getting a hold of doctors and getting some answers about pain management and further treatment. The procedure showed better bloodwork results--the bilirubin levels continued to move toward normal. However, the abdominal and back pain continued to worsen. Bob's primary care physician was able to control the pain somewhat, but we didn't have any answers about future treatment. 

We were finally able to meet with the oncologist specialist at the University of Kentucky on January 14. The treatment that was suggested was not yet approved by the insurance company and had a very slim chance of working with some debilitating side effects. Bob's abdomen was getting more bloated and painful daily and it was decided not to pursue the treatment. We ended up in the emergency room again...this time in LaGrange Baptist Hospital. The CT scan showed extensive tumor invasion and progression in every area of his abdomen, lungs, and liver. It also showed fluid in the lungs and around the heart. After consulting with our primary care doctor, hospice was called in. They are presently managing his care and keeping him comfortable.

Bob is noticeably weaker and gets tired easily. He often feels full, so is not eating much, but manages to have one solid meal a day and another of soup and some boost. He is able to have visitors, so if you'd like to stop by for a visit, it would definitely lighten his spirit. 

I can't thank everyone enough for the love and support you've given us during this very difficult time. Your prayers and generous gifts to us have lightened our family's burden and allowed us to spend time together and cherish the memories we have. Thank you all so much! 

God bless! Joan
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Journal entry by Joan Stromberg

It has been an eventful couple of weeks. About two weeks ago (around Thanksgiving) Bob started experiencing some nausea and loss of appetite and some pretty severe fatigue. A few days later, he noticed his urine was a very dark yellow. He made an appointment to get his bloodwork drawn last Friday, December 6th. The bloodwork showed very high levels of bilirubin in his blood as well as other elevated liver enzymes. Since it was Friday, we couldn't get a ultrasound of the area until Monday. The oncologist suggested that it might be blocked bile ducts from his numerous tumors in the area, which is what the ultrasound showed.

At this point, Bob was in quite a bit of abdominal pain, also. We were actually returning to Louisville from Lexington on Monday when the oncologist called and said we should turn around and go to the emergency room at UK Chandler Hospital where he is located. 

Bob spent a night in the hallway of the Emergency Department, then another in an observation room in the ED, and finally last night, got a room in the hospital. Unfortunately, it took until today (Thursday) for the schedule in the GI department to free up and take Bob in to get some stents inserted in his bile ducts to drain the bilirubin buildup in his liver. Of course, the Feast of Our Lady of Guadalupe (and my oldest son and his bride's anniversary!) is a great day to hand things over to a higher power.

The procedure was successful and the stents are doing what they need to do. Bob is uncomfortable, but resting. We should be able to go home tomorrow. 

The GI doctors did warn us that there was damage to the liver because of the tumors that they could not repair, so it will not be back to normal, but it will be better. We were scheduled to go in for the immunotherapy chemo tomorrow, but that has been put on hold until Bob recovers and we meet with our oncologist.

Since I have not been home all week, my adult children have stepped in to help out, especially Maggie, who has been "mom" and sometimes teacher, to Mark, Cecelia and Thomas this week. Our homeschool community and our Regnum Christi family has also stepped in to help with meals and gas. My daughter, Elizabeth, drove up from Georgia to help us out too. Thank you to one and all. Sharing these hard times with fills me with gratitude to have you as part of my life. God bless!
Joan

Journal entry by Joan Stromberg

Just wanted to give you all an update on Bob's treatments, PET scans and doctor's visits last week. He went to Lexington to get the PET scan on Thursday afternoon, Nov. 21st and we went back to get the results and meet with his NET specialist, Dr. Anthony on Friday and has an infusion scheduled following the doctors visit.

The PET scan was not good. It showed, "disease progression in multiple new, enlarging and more hypermetabolic lesions (tumors) in the left lower neck, chest, abdomen and pelvis." It also showed new tumors on his bone and upper back. 

Obviously, this latest treatment was not working, either. Bob and I were both hoping that with the severe reaction that he had to the treatment and indicates that the treatment is working, would be enough to at least slow down the rapid spread of the disease. There was one tumor on his lung that actually showed shrinkage, other than that, they all grew and spread.

So we move on to another treatment. We will be using a combination immunotherapy that has been showed to be effective in this type of cancer in ongoing clinical trials: Opdivo and Yervoy. He is scheduled to have his first infusion of those drugs December 13. They also have side effects, of course, but it will give Bob about three weeks to recover from the effects of the last treatment before starting a new one. Both this treatment and the last one are still experimental and in clinical trial, so getting the approval from the insurance company is always a bit of a struggle. Hopefully, since UK, where we go to see the specialist, is a teaching hospital, the data they collect from Bob will help in treating this rare form of aggressive cancer in the future.

Bob still works most days even through the fatigue and discomfort. He is having issues with the rash and his ostomy bag sticking and hope that issue clears up soon. He is also very grateful that a rash is not one of the common side effects of the new treatments!

All the family is home this week, or at least part of the week, for Thanksgiving. We plan on celebrating wholeheartedly! Theresa is also making plans to take a semester off college to be with the family for the next six months. I'm sure the adjustment will be hard for her since she loves Benedictine College very much. 

We are lifted by your prayers on a daily basis and continue to thank you for them and know how much they are appreciated. May you and your families have a blessed Thanksgiving and Advent and Christmas seasons!

God bless, Joan

Journal entry by Joan Stromberg

Just wanted to give you an update on Bob and his treatments. He did receive another infusion of the panitumumab a week late, but he did receive it. The side effects are still in full force, this time with more mouth sores and rash along the torso making Bob fatigued and uncomfortable. He is scheduled to have his third infusion this Thursday. After four treatments (or about two months) they should schedule another scan to see if this treatment is more effective than the others.

Meanwhile, we were able to take our pilgrimage to New Orleans for the Blessed Francis Seelos healing Mass on October 6. It was a great trip and very moving. It was such a blessing for us to be able to go. We stopped by EWTN on our way down and then were able to stop by and visit my sister, Maureen, and her family in Oxford, MS on the way back.

While at the Seelos Shrine, we picked up a Novena booklet of healing through the intercession of Blessed Francis Seelos. We plan on starting the Novena on October 23 in order to finish on All Saints' Day, November 1st. If you would like to join us in the Novena, you can follow along at this blog: www.gloryofamerica.blogspot.com or you can send me your email address and I'll send you the prayers everyday for the duration of the Novena. 

We are full of hope, and with your prayers, I know that we can be joyful in each day we have together. God bless you!

Journal entry by Joan Stromberg

Happy Feast of St. Therese, the Little Flower! She is one of my favorite saints and one that I've called on to pray for Bob and his healing.

Since the last update, we have had a few bumps along the road. The three targeted therapies that Bob was scheduled for were not approved by the insurance company. It is a fairly new and still in testing phase therapy, although with really good preliminary results. The appeal for the drug therapy was also denied. Fortunately, we have a great team at University of Kentucky Markey Cancer Center and their personal appeal by our doctors led to the approval of the drugs, which run about $25,000/month. Bob had his first treatment on September 20. There was a risk of a very severe rash and other complications and side effects from the targeted therapies. Since Bob had a year of six different chemo drugs with minimal side effects, we didn't think much of it. Of course he could handle it! 
The day of the treatment, we were scheduled to go to Kansas to visit Theresa at Benedictine College for family weekend. The treatment is infused in Lexington, about 1.5 hours away from home. We hoped that we could get out of there by early afternoon so we could hook up the camper and get to Kansas before midnight. Unfortunately, Bob had an allergic reaction to the infusion and we had to stay and get that under control. We felt it was still important to be in Kansas with Theresa for family weekend, and we had reservations in Kansas, so we left KY at 4 pm and arrived in KS about 1 am. But we had a great weekend and so much fun and family time!
Bob began to get a rash on Thursday. He called the specialist and got a prescription to control the rash. Over the next few days, it got worse and worse. It encompassed his head, scalp, neck upper torso, even his ears. The rash looked liked really bad acne, like a blistering sunburn over his face, neck and scalp. Bob couldn't sleep at night, was running a fever, and very uncomfortable. 
We went to the specialist today and got a few more prescriptions to control the rash. He suggested that we move his next treatment from this Friday to next week. Hopefully, the medications will have a chance to relieve Bob's discomfort before the next treatment. 
The good news is that when patients get this kind of rash during this specific treatment, it typically means that the treatment is effective in stopping the mutations that cause the cancer cells to grow so out of control.
So, if we can get through this, perhaps the next scan won't be as bad as the last few.
To that end, we still hope to make a pilgrimage to New Orleans this weekend for the Feast of Blessed Francis Seelos Oct. 5. I wrote a book about Blessed Francis (Willy Finds Victory), and hope to ask his prayers to Our Savior to heal Bob. Please continue to pray for Bob's healing. and thank you so much for all past prayers. It has been a couple of trying weeks and your prayers are the only way we've gotten through it. God bless you all!

Journal entry by Joan Stromberg

So, today is Bob's birthday! Please wish him a Happy Birthday if you haven't already! And thanks again for all your prayers and good wishes.

Yesterday, Bob got his first scan since the liver resection. Unfortunately, it wasn't the good news we had been praying and hoping for. The liver has regrown along with numerous tumors...about six in all in the liver itself. Another two or three have grown significantly in the lung areas (they had been very small and not active previously)along with a number of other "hot spots" in the original tumor site (colon) pancreas, abdomen, lung, etc. 

So,sine Bob has been through 2 surgeries, a year of 3 different chemo and radiation treatments, his doctors were looking for an outside the box treatment. They have decided to start a targeted therapy treatment of three different targeted therapy treatments. They hope these treatments stop the progression of the disease so that Bob's own immune system can handle those cancer cells left behind. This is a very experimental clinical trial that has very good initial response, but no long term results.

Today is Bob's 59th birthday. If you can send him a B-day message, I'm sure he will greatly appreaciate it. kawmebob@aol.com or 502 475 1269. Thank you for your prayers. 

Journal entry by Joan Stromberg

Just wanted to update you all on Bob's recovery from surgery and where we stand in treatment of the cancer. Bob recovery from surgery went very well. While he was recovering, he usually walked 2.25 miles twice a day. Most of us couldn't keep up with him, he was walking so fast! He was medically released to go back to work this week and is doing very well.

The biopsy from the liver, swollen lymph node and gall bladder was good and bad. The liver tumor had grown quite a bit and was actually starving itself and the center of it was necrotic. The tumor showed that none of the chemo treatments had much effect on it. The lymph node was about 2.5 times larger than it was supposed to be and was completely full of the aggressive, high-grade neuroendocrine cancer. Since it is the lymphatic system that the cancer uses to spread the disease, this was not good. The gall bladder, however, was cancer-free (yeah!). 

The specialist, Dr. Anthony, at the Markey Cancer Center at University of Kentucky, met with us on August 2nd. He said that we really couldn't do anything until we get a PET scan when Bob has healed from surgery. That scan is scheduled for Aug. 30. Dr. Anthony will read the scan and meet with us the same day so we don't have to make two trips to Lexington. If the scan shows any tumor activity, we will set a course of action, most likely immunotherapy, since the chemo had very little effect on the cancer previously.  If there is no evidence of disease, Dr. Anthony will schedule another PET scan two months later. Unfortunately, he said that because of the cancerous lymph node, it isn't a matter of if the cancer returns, but when. Dr. Anthony is highly regarded and on the forefront of research in treating these rare and aggressive neuroendocrine cancers, so we are glad we are under his care.

Meanwhile, since it has been a couple of months since Bob's last chemo treatment, his hair is growing back and his energy levels are rising. His appetite is good and he looks very well. He continues to walk, although just in the evenings since he is working now, and he even started swimming again. 

We've enjoyed many visitors this summer including visits from three of Bob's sisters who were life-savers helping out during Bob's surgery, hospital stay and recovery. Our daughter, Elizabeth, who lives in Georgia, was able to spend a good part of the summer with us, also. 

We thank you all for your prayers and your thoughtfulness. We are uplifted by them daily!

Blessings,
Joan

Journal entry by Bob Stromberg

As previously mentioned, the tumor in my liver was not responding to the chemo and continued to grow and was 7 cm (almost 3") at the last CAT scan on Jun 19.  The surgeon said there was a strong chance he could do it laparoscopically.  On Tuesday, July 16, I went in for a liver resection surgery to remove the right lobe of my liver and my gall bladder.  The tumor had grown more and was now softball sized.  But he was still able to perform the surgery laparoscopically.  He also removed one lymph node which was swollen.  He made one incision for the surgical procedure, one for the camera and one to remove the liver and gall bladder.  The one to remove the liver and gall bladder was by far the largest, about 3".  I assume the organs and tumor are soft enough to squeeze through an opening smaller than the parts removed.  The stitches are internal (under the skin).  I don't know how they do that unless it is also performed laparoscopically.  Then they apply a piece of tape on the outside which will fall off in a week or two and the stitches will dissolve.

They are going to perform a biopsy on the liver and lymph node.  The results will be available in a week but my next appointment with the surgeon is Thursday, August 1 so I will not see the results until that time.  Then I go back to see the specialist in Lexington on Friday, August 2 to determine the next steps in my treatment.  I am pretty sure they are going to do more chemo based on the findings of the biopsy.  However, with tumor removed, I don't know how they will determine if the new chemo is effective.  There are a couple of small spots on my lungs which have grown but very little.  If they shrink, that would be good.

I was in a lot of pain the first two days.  The liver is just below the lungs and breathing in was painful.  I was up and walking the second day.  The worst part was getting out of bed.  Any use of my stomach muscles is very painful.  Each day got a little better and they released me from the hospital on Friday, July 19 around noon.  I am on restricted duty (no more than 10 or 20 lb).  I can eat or drink anything I want as long it does not bother me.  But no more than one or two drinks, which I never drink more than that anyway.

I went for a walk this morning around 8:30 before it got too hot.  It was already 80 degrees and very humid.  Supposed to get to mid-90s with temperature index in the 100s today and tomorrow.  I would like to go for several walks a day but likely will only get an early morning walk due to the heat.  The temperatures are supposed to break on Monday with some storms moving in and then high in the 80s after that.

Overall, the surgery was very successful and recovery is going very well.  Thanks for all of your prayers and keep them going.  I am convinced they are making all the difference between a good outcome and a poor outcome.

Journal entry by Bob Stromberg

A couple people expressed concern about my comment regarding 4 months without treatment.  Wednesday was a rough day for me and all of my family.  My intention was to express the fear and anxiety that we felt that evening.  My biggest concern was that I would need to go through some tumor reduction process which would have added months to my treatment.  But Thursday was a great relief.  I am very confident that removing the tumor will greatly increase my chances of long term survival and the 2 months without chemo will not be a problem.  The growth tends to exponential, not linear, so 2 months is not half the risk but just a small fraction of the risk.  It has now been 3.5 weeks and I can tell by the numbness in my feet and fatigue that there is still plenty of chemo left in my system.  My family and I are again very hopeful.

Journal entry by Bob Stromberg

This has been a rough week but it ended well.  

We met with the radiologist on Tuesday.  She said the tumor is too big to treat with stereotactic radiation.  She could treat with another type of radiation that is also very focused but likely would do damage to the liver.  She said this should be a last choice.

We met with my oncologist on Wednesday.  Blood-work looked good but he recommended to stop all chemo treatments because it was not effective on the tumor.  We discussed the immunotherapy.  One thing our radiologist said was that the Keytruda is only proven to be effective if one marker (PD-L is present. The DNA analysis said there was zero percent present.  When we asked about this, the oncologist said that is true but was one of few immunotherapies that could be used in conjunction with the chemo treatment.  This very much upset me as the stated purpose was to start during chemo so that it would be actively working when chemo ended and used as on-going maintenance.  So not only did we stop chemo, we also stopped the immunotherapy.  The specialist in Lexington previously said that 4 months without any treatment would possibly kill me.  It has been three weeks since my last treatment and if the tumor is too big to remove, it could easily be months to reduce size, schedule and remove tumor and then recovery.

We met with the surgeon today. He reviewed all my records and the CT scans and talked to my oncologist before coming in to see me.  When he came in, he said removing the tumor will be no problem and there is a 90% chance he can do laparoscopically which reduces the recovery time.  That was a great relief to Joan and me.  He informed us of all the risk (infection, bleeding, death, etc.) but sounded very confident that all would go very well.  The surgery is scheduled for Tuesday, July 16.  Initial hospital stay will be 4-6 days.  I will be on restricted duty for about 3 weeks.  He said the liver is very greedy and will suck all the nutrients out of the blood stream during recovery so I will have very little energy for the first few weeks.

I contacted the specialist in Lexington and let them know the plan and asked if I could get an appointment before the surgery to discuss post-operative treatment plan.  I do not plan to go back to my current oncologist.

Journal entry by Joan Stromberg

Hey Everyone! 

First of all, thank you all for your prayers for Bob and for our family. It has been quite a roller coaster ride the last two weeks. Bob had his first colonoscopy June 26 and was found to have a large tumor in his rectum. Biopsy showed that the tumor was cancerous. Further tests showed that the tumor was most likely stage one or two, so that if it was removed, chemo, at this point, is not indicated. 

Bob goes into surgery at 12:30 tomorrow, July 17th, which is also our youngest son, Tommy's 10th birthday and the 8th anniversary of my mother's death. He will be at Baptist East and Dr. Allen is his surgeon. She is very highly regarded in this field, so we are very hopeful of a good outcome.

One of the reasons this came as such a surprise is that Bob has no risk factors for cancer...colon or otherwise. There is no family history, we eat well, grow many of our own vegetables, eat homecooked meals from locally raised meat. He exercises regularly, is not at all overweight, and is moderate in all ways. 

Still, the ways of the Lord are not our ways and his plans are not our plans. We are all very grateful that the cancer was caught in time to hopefully cure through surgery, as painful and uncomfortable it may be. 

Please continue to keep us in your prayers. I can feel the grace they have brought us every moment of every day. They lift our spirits and draw us together as family in the Body of Christ. 

I have to say a word of absolute gratitude to the children God has blessed us with. From Joe and Elise who have put their moving plans on hold to little Tommy who was unfazed that his birthday celebration would have to wait. The generous actions of Mary who made dinners for the week to Maggie and Theresa filling in the gaps of running kids around and making sure they get where they need to be. All the girls, including Elizabeth, now in Atlanta, stepping up to fulfill my obligations with Little Flowers Camps, is also such a blessing and relief.

Surgery is scheduled at 12:30 tomorrow, July 17 at Baptist East. It is expected to last 5 hours. It will be done in three phases: removal of the tumor and surrounding section, a resection, an a temporary ileostomy until the resection heals. After 6 weeks or so, the ileostomy will be reversed in another surgery. 

Thank you again for your prayers! God bless you all.
Joan
Bob’s Story

Site created on July 16, 2018

Bob was diagnosed with colorectal cancer June 27, 2018.  Surgery to remove the tumor is July 17, 2018 at Baptist Hospital in Louisville. Although the tumor is quite large, the surgeon is hopeful that the surgery is all that will be needed to rid the cancer from Bob's body, since there is no indication that it has spread further. Please keep us in your prayers. God bless you all!

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