Our Journey

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JANUARY 20, 2016.  My sweet wife Susie received some unwelcome news last weekend. Sadly she has been diagnosed with two significant liver tumors; of course we're shell-shocked and have no idea where this will lead. We have been overwhelmed by friends offering prayers, love and food as we try to understand more. Currently, we are just laying low until we know more, and thank you all for your outpouring of friendship. On Thursday 21st January, we will visit our oncologist and really start to understand the complexity of the situation. If you don't hear from us, it's not personal - we have a lot going on. It would be easier to update friends and family right here in one place, so please check back for chronological updates....

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JANUARY 21, 2016.  It's very hard to write these words. Susie has stage IV metastatic small cell carcinoma. We have scheduled a PET scan and a brain MRI very soon, to see where the cancer originated. That will fill in some missing details, but she will start chemo in a week to ten days. If she's a candidate, she may also participate in a study which is trying additional drugs to the chemo regimen. With treatment, she may be looking at just one year left with us. We are devastated, but will take each day as it comes. We know that you're lifting us with thoughts and prayers through this difficult time. You'll have to forgive the checkered hours of business that may lie ahead, but we'll work together through this, and focus on just what is the most important - Susie's care.

Some of you have asked how Susie feels. Unfortunately the abdominal pain is difficult to manage; apparently the tumors are stressing out surrounding organs. She has the edge taken off with prescription Ibuprofen for now, and some anti-nauseal if she needs it. Why Ibuprofen? Because she's a "medi-weenie," that's why. It took two days of pain narcotics at Wesley Medical Center to convince us that she's not a candidate for those. So. her spirits are good; she's in a lot of discomfort, but ready to approach chemo to shrink the tumors and hold things at bay.

Susie's email is lilacsuz@gmail.com and of course you can send her happy thoughts. She may be just too overwhelmed to respond, but she'll read every one, we promise!

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SUNDAY JANUARY 24, 2016. Susie is extremely tired and concerned about the pain. Tomorrow, she should have a PET scan - subject to insurance confirmation. This should reveal any other involved areas in the torso. On Tuesday, she'll have a brain MRI scan to complete the search. The results may change the plan, but tentatively she will start chemotherapy very soon - perhaps as soon as this Friday. Perhaps the hardest thing for Susie is to slow down, or take a nap when her body says so. She's so used to long busy days, it's really difficult.

Again, thank you all for the wonderful wishes, prayers and gestures of goodwill that have come our way. We love you all!

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MONDAY JANUARY 25, 2016. We have been totally inundated with flowers, good wishes, prayers and pleas to help. We could not be any more grateful for these and the extraordinary GoFundMe fundraiser. Given our recent events with Susie's medical insurance, we will be even more happy later. Insurance would not cover the PET scan, although they might if other tests are done sequentially. Despite having offered to pay for the test, it seems we just have to be patient. As a result, the brain MRI scan will be tomorrow; Susie will have a CT scan of the chest on Wednesday, and the port-a-cath implanted on Friday. The port-a-cath allows easier access to the veins for administering drugs. Somewhere in between these are a couple more blood tests, and another visit with the oncologist on Friday. All being well, chemo will start on Monday next.

Susie is very, very tired. Pray that she goes through these tests soundly, and faces the chemo with confidence. She's not sleeping well at all, despite the tiredness, which does not help matters. She is coming to grips with all eventualities, but is mostly concerned with the effect on others, (School, grandchildren and family members) and of course not her own well-being. Hard not to love a spirit like this!

She did want to apologize to some of the teachers at her 10 schools. She had tentatively arranged to stop in and say "hi" to staff and children. We didn't realize that all this has slowed her down considerably, and right now she just is just not able. This is, of course, a postponement, not a cancellation! We will be there to see you, one of these better days ahead.....

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FRIDAY JANUARY 29, 2016.  Today, Susie had the port-a-cath inserted successfully. This is the port used for administering the chemo drugs soon. She's a little sore, but at this point it's more of the same. We had a little time to take a nap before seeing the oncologist at 3:30. We are meeting resistance from Aetna insurance as far as - well, paying for anything! Her initial hospitalization? Not approved. PET scan? Not approved. Chemo? Pending. I'm sure these things will iron out in time, not the least because they will be hearing from the Doc...

Susie's brain is clear. (Something may be wrong, there. I'll check that assessment!) The lungs do have a few tiny and inconsequential nodules, so Dr. Truong is really eager to get a full body PET scan to locate the source of the primary cancer. (It's extremely rare to have primary small cell carcinoma of the liver.) Nonetheless, Susie will start chemo next week, once the insurance has been ironed out.

To be clear.....her tumors are significant. Chemo will only shrink the tumors and suppress the growth for a short period of time, but ordinarily they do recur and eventually overwhelm the organ. Because of this, the "one year" estimate is not an unreasonable guess. I can hardly put into words the immense sadness at hearing the word "terminal" in our conversations with the oncologist. So....after the requisite crying session on the way home, we're settled down and looking forward to a quiet night in.

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MONDAY FEBRUARY 1, 2016. We had a lovely weekend and saw all of the grandchildren. It really raised Susie's spirits, but at the same time made her realize how tired she gets, and how quickly. It's emotionally devastating for her to think that her time with them may be limited. This week we hope to learn that chemo starts very soon; we've had a few delays on insurance which should be resolved shortly. On that subject, I'd like to clarify a few things. Like most of you who read the last note, we are very upset with our coverage. Having said that, we must be very patient and allow the system to work. Susie's oncologist will be visiting with them peer-to-peer and we know he's pretty persuasive. If that doesn't work, then I'll step into the process and hopefully "kill 'me with kindness" until they relent. Until then, I'm just not worried.

Here are some other thoughts and thanks from us both. You may, or may not, notice some rather dry humor interlaced through these paragraphs. Humor is extremely important, even in the most dire of circumstances.

Susie would like to thank her many Kerschen cousins for their outpouring of cards and messages. Some included anecdotes from childhood which had special meaning, and all expressed sentiments of keeping us uplifted in prayer. She has tried to answer many of these, and apologizes if anyone has been skipped. Similarly, with the extensive teacher and musician communications; she is trying hard to send responses to all, but may just have to answer a few on the fly. The outpouring from her colleagues at Allen Elementary and her other nine schools has been amazing, as has the response from my customers and friends. Please send me a note if you must have a response, or feel that we've missed something; it's not intentional!   My email is look@mcfiddles.com

Until the onset of social media, we were pretty private. Very few needs, and happy with our own little world. Both of our jobs entailed hours way beyond a 40-hour week, and even small windows of time were precious. In this light, recently we may have appeared to push away the many offers of food and visitors. We've been advised to maintain as normal a lifestyle as possible including food and sleeping habits, so we're really not trying to offend. Despite my hiring additional security and restocking the piranha filled moat, a few brave souls avoided the crumbling ramparts and showed up anyway. Some of them have known us for enough years that it doesn't matter what we think, and of course they're right. We welcomed them and their gifts, and hugged and cried with gratitude. You know who you are, and we love you very much.

Thoughts and prayers, then, for things to fall into place and chemo to start on Wednesday. No, it won't be pleasant, but at this point we are desperate to bring Susie some relief if possible. We're hoping that with tumor shrinkage, some of the symptoms which include stomach cramps, headaches, backache, and abdominal pain will lessen. Thank you, everyone, so much. We will never be able to repay your generosity....

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 Tuesday February 2, 2016. Quite an eventful day here. We drove to "Victory in the Valley," a renowned cancer support center here in Wichita. I hesitate to mention that we drove because it's...err.....two blocks from our home. If my mother in England reads this, I'm in big trouble. At 85 she would think nothing of walking several miles to get some fresh air. Ah, well.

What a fabulous place, with gentle, caring people. They provided a wonderful pre-chemotherapy goodie bag with some nice personal gifts. Blanket, Neck rest, water bottle, diary etc. Then we went to the wig room, where after one or two false starts, she chose a wig and a few other pieces of headwear.

We arrived home to a missed phone call from her doctor's office. The chemo was approved, and will begin at 8:00am tomorrow morning. All of a sudden we're jumping into high gear on this, with plenty of tears, fear and trepidation. Tomorrow we get serious, and give this insidious disease our best shot!!

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WEDNESDAY February 3, 2016. We arrived at 8:00 to start the process of chemo for the first day. It was a little protracted because of the detailed explanation of every facet, so we were actually there almost 5 hours. Susie took it all in stride, but tonight is very tired indeed. We actually both lay down and slept for a while this afternoon, perhaps glad to have the first step behind us. She is quite worried about just not having the energy to answer the many emails and texts that arrive. She reads every one, but apologizes to all that she just cannot answer but a few now and then. Tomorrow, the regimen continues. Three hours of chemo once again, and then yet again on Friday. Then, they hook up an injectible which automatically delivers subcutaneously on Saturday. It's to stimulate the immune system to help out and keep the white blood cell count up. Apparently (they're pretty honest about this) the injection can cause severe pain anywhere there's bone marrow in the body. And so a few over-the-counter things are added in to counteract some of this pain.

Aetna has now stepped up to the plate and will support up to six of the chemo cycles and injections. A PET scan is scheduled for Feb 8th, but we are still awaiting coverage.....that will help us to perhaps find the original source of the cancer.

We now understand both the magnitude of the problem, and that of the treatment. It's certainly sobering, but we move on with confidence that medical science and prayer might coincide and bring Susie the cure that she needs!

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FRIDAY  February 5, 2016. I'm not sure how to describe the effects of chemotherapy on a body. Susie did her treatment yesterday but seemed very upset last night. I told her not to refer to chemo as "poison" but to characterize it as an army of "little warriors," perhaps. I did, of course, quietly think that her perspective might be more accurate. In the following, I'm going to outline gently why Susie may not be "taking a weekend away" or "enjoying her quiet time" as a few well-wishers have suggested. This might allow you to peek through our window and get a glimpse of what she is facing.

For someone with a healthy body and vigorous digestive system, chemo can be overwhelming and bath rooming issues can become challenging. Well known remedies can be tried until a happy balance is achieved. Susie, though, has lived with colitis and diverticulitis for many, many years, and has essentially controlled this situation with careful diet and exercise. One would never have guessed, given her rigorous daily work schedule, how she even managed to hold down a job, let alone travel to 9 or 10 schools in all sorts of weather with multiple bags in tow. Applying chemo to a challenged body like hers introduces a whole new level of difficulty.....especially because the liver is so involved and that's why her chemo therapy is that much more difficult.

We were a bit worried about some leg swelling (probably edema from the treatments) but a leg sonogram was done to rule out a blood clot.

BUT! (A few trumpets here might set the tone better) Insurance has indeed, in their inimitable 70% co-operating way, approved the PET scan for Monday morning at 6:45. We may, at last, have an answer for the primary source of Susie's secondary carcinoma of the liver.

We love you all, so much, and know that you're there for us. We'll never be able to repay your kindness.

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SUNDAY February 7, 2016. Before I go any further, I need to clarify my comments about regarding Chemo as "poison." Susie has been really upbeat and has primarily related to chemo amusingly in terms of chomping Pac-Man characters, or indeed a river carrying off the tumors over a waterfall. It was only in a rare moment of frustration that she came up with the poison motif, and I probably shouldn't have mentioned it. It's so hard to create a balance between the ugly reality of all this, and enough information for you to know what's going on.

 In summary, we've had three intensive days of chemo followed by a Neulasta injection. Today we're kicking back and probably have a bit too much time to ponder all that's happened. I couldn't be more proud of Susie having taken the last week in stride. Tomorrow is PET - CT scan day, so maybe our picture can be completed at last.

Susie would like to thank everyone for their positive comments by email or texts; periodically I'll mention one group that stands out, or has surprised her pleasantly. This time it's the alumni from her 1975 graduating class from  East High......and from WSU's Delta Gamma sorority. So lovely to hear from everyone!

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THURSDAY February 11, 2016. I know....I know.....(I've been hearing!) It has been four days since the last post. Susie has been insistent that I try to get into work for at least half days, corresponding with the hours that the shop is open for customers. The truth is, if we don't have medical appointments, I could go in earlier yet. I just don't want to leave....

The long-awaited PET scan was set for early on Monday. It was in total about two hours, including the one hour to wait while the radioactive injection made it's way where it needed to go. There were a few teething troubles with the brand new machine settings, and so it did take a little longer than they thought. The operator blithely suggested that "we'd get the results on the 19th, when you see your doctor..." Needless to say, we felt that it should be a bit sooner. I faxed the nurse and had my own suggestion - that if we didn't hear sooner than that, one of us would probably die of a heart attack, adding to our issues. We could not be happier with the kindness shown by Dr. Truong's staff, who are now aware of the McHugh's sense of humor.

A couple of things have come to light. The PET scan - a full body scan - showed no other primary source of cancer besides the liver. Although the prognosis is still a little bleak, we at least felt just a bit better with that news. But, it complicates things a little, because there are only a dozen or so examples of primary liver cancer of the small cell carcinoma type in the medical literature. Susie reminded me that indeed, she's always been a bit "special!"

She's still struggling to recover from the chemo, as they're treating her for a secondary infection. Although they had anticipated that the white blood cell count would be lower following chemo, hers was even lower than they'd expected. So....if you drop by and see a "No Visitors" sign on our door, please don't be offended. We may have to do that from time to time. With liver cancer, the most problematic issue is that the organ is trying desperately hard to process chemo, medicines, foods and blood impurities while compromised. But know that we are trying to be strong, calm and faithful.

Susie's family is always ready to help in any way, whether it be for errands or for listening or for adding levity to our plight!

Susie and I also need to thank our dear friend Cindy Watson for initiating the fundraiser for our medical costs. Even with reasonable insurance, our out of pocket expenses have been sobering already. Although we were resistant to her suggestion at first, we're glad that she stood her ground and insisted this would be necessary, and good. Thank you, Cindy!!

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FRIDAY February 19, 2016. There are good days, and there are (mercifully not many!) not-so-good days. Susie has maintained such a good disposition throughout, with the small exception of a tirade on the stairs one evening. She was more than vocal about disparaging me, the IRS, life in general, etc. And even God didn't fare too well for a minute or two. Perhaps it was cathartic, because my sweet Susie returned soon after for normal conversation.

Today we saw Dr. Truong for an update. Although the PET-CT scan showed no obvious primary source of cancer, he is certain that there is an origin somewhere. Apparently these can be difficult to find sometimes. There were three tiny nodules in her lungs showing "extra metabolic activity" but he could not attribute the serious and large carcinomas in her liver to these. If there should be additional activity in that area, it will be a dreadful affront to a non-smoking singer and teacher of music to so many. Susie was on good form today, and optimistic during our visit. Her white blood count was nicely resolved; red count is a little low, as are platelets. But overall, in reasonable shape to approach her second four-day chemo session. Maybe we're in a little window of sanity at the end of a cycle, and just before the next session. Whatever it is, Susie seemed pleased, and told the doctor that she was winding down levels of pain medication a little, and feeling as if she was more able to balance things if they might go awry. I was so proud of her as I looked across at the two of them. So proud that I didn't interject very much. That's a first.

"Mrs. Susie" (I LOVE to read that on cards from the kids...) felt the first strands of hair slipping away a few days ago. What a sad feeling. By Wednesday and Thursday, they became veritable clumps that pulled away with each pull of her comb. That was the tipping point. She made an appointment with her sweet longtime hairdresser to shave completely and allow the easier use of scarves, hats, and maybe even a wig. Abby, our daughter, will be chauffeuring and providing her inimitable humor along the way. It'll be the perfect pairing (in my absence of course), as I have to work tomorrow. I know they'll cry and laugh together, and laughing will prevail. Susie has had many thoughts about this, but I've heard a couple of times today, "It's just hair." I do love her.

"Hats off" today especially for Mary Pangburn! Mary has suffered her own ills in life, including MS. But it didn't stop her from making a stack (one for each day of the week) of beautiful handmade knitted hats for Susie. Lovely colors, and even a fine black and gold one for some sports team or other. Oh, yeah, the Shockers? There are many other wonderful friends to thank, including the Thacker's who managed to win the "Largest stuffed animal for Susie to snuggle up with" award; and "Strangest way to present flowers to Susie" award won by Susan Mayo. She may have to explain to you how a Troll bank can become a vase. You are all awesome.

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TUESDAY March 2nd, 2016. "Some days are diamonds; some days are stones..."  We're so sorry not to have posted recently. It's particularly hard when Susie is struggling with chemo, pain, bodily functions and other meds on top to balance things. In brief windows where she has encouraged me to write, I just couldn't bring myself to do so.

Toward the end of the first chemo cycle, we were expecting things to calm - even for a day or two - before going ahead with Chemo Round Two. Unfortunately, the Neulasta drug decided to kick in with a vengeance around day 14. Remember, the Neulasta contains an amazing protein that tricks the bone marrow into producing white bloods cells rapidly, to replenish the diminished supply. This meant that Susie had no relief, and was in extreme pain when the chemo treatments started again. Chemo two was much harder, in fact. Every component of the chemotherapy has a negative effect on so many important bodily functions, and Susie was struck again by almost insurmountable digestive tract issues. Things remain in such a delicate balance, but she's persevering.

Despite having every reason to not do a thing, Susie tries hard to stay busy here in the house. She cooks meals, keeps laundry going and straightens up. Her doctor impressed on us the need to keep moving and active, even with little things. She put some of her magic touches to good effect by placing St. Patrick's decorations here and there in our home. She always kept the seasons changed appropriately so that visitors would never doubt the occasion! What a delight. She tires very easily; we've gone out a couple of times but at the twenty minute mark she deflates just a bit, and we know we have to draw the line and return home.

Thanks, this time, to the staff and friends at Allen Elementary School. It's Susie's "base" school that houses her small but orderly office. They have been so supportive, and it means such a lot to her. The music colleagues too, throughout the district, have been wonderful. She also wants to mention her "Emerson Parent" friends from so many years ago when our children were in elementary school. How extraordinarily thoughtful, ladies! Perhaps it goes without saying that our children, Iain and Abby, have been there for us with constant calls of encouragement and offers of help. And they have made our five beautiful grandchildren available which is always a spirit-lifter!

We do try to think of someone or a group to mention as we close. We don't mean to miss anyone, and there is a chance that we might; just know we are eternally grateful for all of the kindness shown. Thank you, all.....we love you, and we'll try to visit again in about a week.

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FRIDAY March 11th, 2016. It has been a busy week all around; things at the shop have been encouraging. Customers have been extremely patient with my "flexible hours" but Susie is making sure that I head in and put in plenty of time. Her week included blood work and the long awaited CT scan on Tuesday. She's had a few really good days this round, with increased energy and more normal-feeling moments!

Today we met our out-of-town friends Laura and Pam, for lunch at Great Harvest. It was wonderful to see them and to catch up. Shortly after, we met with our oncologist (We're in this together) to review the results of the CT scan, and discuss any other concerns. We were SO encouraged with the news that he shared with us! The largest tumor, in the right lobe (8cm), has shrunk to a little over half of it's original size. We were quite startled to learn that there was almost no evidence of the second largest tumor (5cm) and frankly we forgot to discuss the remaining tumors that exist in the left lobe. He thought that this was great news, and told us to go out and celebrate. He tempered it a little by reminding us that there are no guarantees when dealing with cancer and tumors, and encouraged Susie to live each day to her fullest. We have alternated between laughter and tears this evening with mixed emotions. Nonetheless, Susie is looking optimistically toward chemo cycle three which will be from Wednesday through Saturday this coming week.

Thank you once again for your love and prayers, and we wish a happy Spring Break to many of our teacher and student friends!

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Sunday March 20th, 2016. I'm afraid that the long breaks between postings might indicate a reluctance to write. Unfortunately that's the case this week as it has been particularly hard. Susie managed to experience the normal, plus a very late, kick-in of the Neulasta drug; the doctor suggested that this might become the normal pattern for her. This meant that she was still struggling with both flu symptoms and bone pain as the third chemotherapy session started. Everything seemed hard, despite her good attitude. I was with her on Wednesday and Thursday; our daughter Abby made me relinquish title of chemo helper on Friday. There are always distractions at "Chemo,"...this time, Abby glanced across and read the hat proudly worn by an older African American. It read, "Tuskegee Airmen." It didn't take long for her to take his arm, and ask him about his service. What an incredible but unappreciated story! Hopefully, he might visit her classroom and relate his story for her eager 5th graders. Abby made the chemo time go quickly by sharing recipes, photos and funny videos with Susie, and we really thank her for the support. I was able to work a full day on Friday which was so helpful.

Lighter moments on both Thursday and Friday included the therapy dogs brought in by volunteers. Susie and I had on our finest green attire for St. Patrick's day, and so did the sweet tiny dog Abigail who stopped by. The day before, Abigail had her teeth cleaned. This involved sedation, and she was still tired, so her kind owner was pushing her from room to room in a doll stroller. Some things, one cannot make up. On Friday, Susie and Abby were visited by "Persky," a gorgeous retired greyhound. How thoughtful of the Victory in the Valley volunteers to share the animals, and snacks for the patients.

Susie rounded out the trying four days with a new Neulasta shot. There's little doubt that this is an amazing advance in medicine, but the timing and efficacy can vary a lot. The weekend has been quiet as she struggles onward. We're hoping for a quicker response to the Neulasta this time; her only wish is to have a little window of three or four days of relative comfort before Chemo Four starts on April 6th.

We know that you're there for us - even in the difficult times, we're floating along supported by your love, support, and prayers!

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Monday April 4th, 2016. Sometimes.....it's as if we're in a big holding pattern. There are good days, and there are not-so-good days. Susie struggled with the third chemo, because she still hadn't quite recovered from the end of the second chemo phase, and recovery. The fourth Chemo starts on Wednesday, all being well. We saw Dr. Truong today for a review, and clearly her red and white blood counts are quite low. Along with all this, we're a bit concerned about gall bladder issues raising their ugly head; you might remember, that's where we started last year, and why we had a sonogram baseline back in July 2015. After the fourth Chemo, she will have multiple CT scans for a full overview. If things have diminished further yet, she will be a candidate for an immunotherapy study. The double blind study involves three arms. One immunotherapy drug; two immunotherapy drugs; and placebo. Thorough comparisons over time will guide the companies perhaps to a drug that might encourage the body's own immune system to fight cancers directly in the future. Dr. Truong will take a look at things after the study and decide what approach to take, then. He may then resume the current chemo regimen, or perhaps a different chemo combination.

It is very easy these days to Google "liver cancer," and having found optimistic solutions, some loving family and friends have come up with what they hope is helpful advice for Susie. Because of this, I think that we need to clarify her diagnosis. Despite never having drunk or smoked, she has stage 4 metastasized small cell carcinoma of the liver. Googling this might give a far more sobering view. Surgery, radiation or even liver transplants are simply not an option. Our current regimen attempts to retard, or quell the cancer for a while. Inevitably, it will recur - we just hope much, much further down the road! In this extended time, we are of course praying for a miracle, or at least the emergence of an awesome immunotherapy drug.....

OK, put down the Kleenex for a minute, and we'll tell you of a joyous occasion last week. My customers, our friends and Susie's teacher colleagues overlap in a delightful way. Some stringed instrument teachers in our district put together a benefit concert for Susie. Even though her blood counts were a bit low, she was cleared to attend, and we are SO glad that we did. It was a fundraiser Taco supper provided by our local Chinos Parrilla and by all accounts was splendid food. We'd know for sure, but we were so busy visiting teachers and friends we didn't quite make the food line! We entered the commons area of Northwest High School and it was filled with teachers and friends from all over the school district and city. The Wichita Symphony String Quartet serenaded the gathering; special thanks to Cindy, Chelley, Hailey and Camille! We hugged and cried our way across the room, and Susie reconnected with teachers that she had so suddenly left back in January. Now if this was all that the evening had provided, it would have been tremendous. But, there was more. Those string teachers had corralled ensembles from the schools, and they all had an opportunity to play throughout the evening in the school auditorium. It provided an amazing showcase of middle school and high school orchestral prowess, and we are immensely proud of our district. We should remember occasions such as this when budget cuts are aimed at the fine arts programs; be assured, we'll be at the school board meetings pleading our case if this ever occurs again. The evening's music was capped with a beautiful lullaby played by a group of our string teachers. Just prior to that, we were given a large framed photo with many signatures and well-wishes from attendees. What a memory.

We continue to be amazed by the outpouring of love directed toward us. In difficult moments, we use this cushion of support  to laugh, cry or just float along contentedly.....

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Sunday April 17th, 2016. We'll never know the delights of what I wrote yesterday, because my computer decided to expire (soft, warily speaking) before it was published. Today is a new day, and I've hastily reloaded programs sufficiently to a) update the website, and b) finish off my taxes. Fortunately I'm enough of a nerd to have double backups on other media, but it's still a huge pain....

Today we can review things now that the fourth chemo session is behind us. It was the hardest of all, as Susie's blood counts were all pretty low, along with her blood pressure. Her doctor had mentioned that the chemo effects could indeed be cumulative, and she has no reason to argue that at all. We have visited about the drug Neulasta and it's remarkable ability to trick the bone marrow into generating white blood cells; one of the side effects is a burning pain in large bones, including the sternum. Susie experienced that last Tuesday evening, after a long difficult day, accompanied by several hours of sickness. It's sometimes confused with having a heart attack, but fortunately we knew that it was a possibility beforehand. I wouldn't say that it made the situation any easier. On Wednesday, she had blood tests which showed the white up a little, but the red counts, including hemoglobin, were low. She added "chemo induced anemia" to the mix, necessitating a shot of Procrit. Now we've all chuckled at the ads on TV with the disastrous side effects; all that I can say is, DON'T Google www.procrit.com because it will horrify you.

Oh, for goodness sake. I told you not to. Just like the doctor told us not to. But we did. After another sleepless night, we learned that just about half of all the chemo patients take this stuff, and they've never had any issue at all. So Susie took it in stride, as she does, and although she did have moderate bone pain, it's reasonably controlled now.

On Saturday, Susie spent time with a dear friend from college, who now lives in Nebraska, Tami Zielke. They enjoyed breakfast and lots of reminiscing. Tami hopes to be back this summer, and they'll include a couple more WSU friends to the group for assuredly even more laughter.

This week, Susie will have multiple CT scans to assess her progress; blood tests and a possible Procrit shot; a visit with the good folks at USD 259 to outline her phasing into retirement, and on Friday a visit with her oncologist Dr. Truong. He will guide us either toward an immunotherapy trial, or to a couple more chemo sessions. We will post next weekend, I promise.

Perhaps we haven't mentioned the wonderful nurses and aides at the Cancer Center of Kansas. Theirs cannot be an easy task, but they are consistently cheerful, informative and extremely patient as they take all the time needed....to listen. We thank them all from the bottom of our hearts.

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April 23rd, 2016. Yesterday.....all my troubles seemed so far away....No. Wait a minute. We were, as usual, up to our eyeballs in crises. On Sunday night, just after our last report, Susie had a horrendous attack of sickness along with some serious abdomen pain that bored through to her back. All this was reminiscent of previous gall bladder attacks that Susie had experienced for years. She obstinately but perhaps wisely resisted going to the ER, despite my entreaties. After four and a half hours, things calmed enough for her to sleep a little and face the new day.

We had waited anxiously for the CT scans to determine the condition of the tumors in the liver. As it happened, it was very clear that the gall bladder was seriously compromised. It was swollen and surrounded by fluid, necessitating a visit with her surgeon, Dr. Paul Harrison. We scheduled the visit to be close to our appointment with Dr. Truong, and the two conferred. The end result was that the gall bladder status merited immediate attention, and so this Wednesday has been set for her gall bladder to be removed. Dr. Truong was sure that a damaged gall bladder could easily interfere with continued cancer treatments. Prior to the surgery, her blood counts will have to have reached manageable levels in order for surgery to go ahead. On Monday, we have those blood tests and hope that those goals have been reached. If not, we must postpone.

And so we take it one day at a time. All being well, a week after surgery we might get back on track, and finally have the visit with Dr. Truong that determines which way we go regarding further treatment. He'll make the final call whether to have two more chemo sessions, or commence an immunotherapy trial.

I'm SO proud of Susie to take yet another stumbling block in stride. Initially, the intention will be to laparascopically remove the gall bladder. But given its condition, and proximity to the compromised liver, (i.e. "attached") the surgery could develop into a traditional opening. We really hope not...

Well, that's the weekly summary. Once again we thank you all for the daily encouragement that we receive in so many ways. Let's hope that this week is indeed just a bump in the road along the way; our wish is to have Susie suffer much less abdominal pain, to better prepare her for the long fight ahead.

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Thursday, April 28th, 2016. Well, it has been an eventful week. On Wednesday, Susie had the gallbladder removal surgery. Despite multiple CT scans and ultrasounds over the last year, in addition to the known polyp, the surgeon was surprised to discover a "good-sized" gallstone in the gallbladder. Susie has pleaded for years that she was having gall bladder issues, but by the time the tests would follow, perhaps a week later, things would have settled down. The surgery became a little longer than usual; they had to be particularly careful because of the proximity to the cancerous tumor in the liver. The doctor told me that fortunately, they managed to snag the stone with a "basket" and although we're sure it's a complex medical device, we chuckled today as we envisioned other basket versions such as "shopping" "bread" or "frying." We have to find humor where we can. The alternative would have been to bring in a gastroenterologist and use a different technique. The extended anesthesia has been a lot more difficult to shake off; they did suggest that it could take several days for the resultant shoulder and back pain, besides the incision and internal pain, to subside.

A week from tomorrow, we will have a follow up with the surgeon. Immediately following, we'll see Dr. Truong and discuss our options for continued cancer care. Meanwhile we continue to be showered with well-wishes from so many colleagues and friends and family; just know that this is so comforting as we proceed.....

As the school year is ending, Susie has been feeling pretty heartbroken about the abrupt end to her teaching career. Even on a bad day, she has loved being a teacher, and she hopes that her students and colleagues know just how much they meant to her!

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Monday, May 9th, 2016. If we have learned anything at all, it's that very little ever goes as planned. Conversations had led us to believe that Dr. Truong was leaning toward two more rounds of chemotherapy for Susie. He had indicated that her primary tumor area had shrunk just 25% more after the fourth chemo, and he wanted to stay on that course. Then, as we sat in his office last Friday, he outlined the reasons, after a lot of pondering, why we should apply to be accepted into a clinical trial of immunotherapy drugs. This might be our only shot at a cutting edge treatment which has received a lot of attention from success with other types of cancer. We do have to understand that it's a double-blind study, which has "placebo" as one of the three branches. We will pray that we would receive one of the alternatives, a single drug, or a combination of two drugs. His viewpoint stressed that we have everything to gain, and very little to lose; should the tumors begin to rapidly grow again, we could always withdraw and resume some rounds of chemotherapy. We also know that she would be rigorously monitored during this period.

Having read carefully through, and approved the 26 page permissions packet, we left the office quietly optimistic that we now knew the next step. We were a little apprehensive of all that was involved, and had many conversations over the weekend discussing the merits and problems of such treatment. Today we found out much more about the preparation for the trial; including the need for current brain MRI, current liver biopsy, and continued CT scans and bloodworm. The emotional and physical toll of all that lies ahead is totally intimidating. "Current," naturally, means "right now," and not 60 days or 90 days old, such as those that we have already on file. Sometimes Susie feels so enthusiastic, and sometimes feels like giving up, as these new procedures will need to be completed in a week to ten days...

The only benefit in taking the gall bladder detour was that Susie settled last week and felt reasonably well enough to face her challenge. In January, her career had been unceremoniously ended with her diagnosis. This left groups of small instruments, stands and CD players at ten schools. She asked USD 259 if she could visit the schools, collect the instruments, and visit her beloved students and colleagues. For decades it was her habit to return everything to her base building for inventory, and close out the year. This time, it gave her the chance for hugs, smiles and tears and to manage just a little bit of closure at last. With a 20 lb lifting restriction, she needed someone to accompany her; my big muscles and I were only too delighted to help the cause. It was lovely to witness the tremendous love shown by everyone toward her, and of course see her love for them. She was sporting her brightly colored head coverings, as usual. "Miss Susie....do you have hair under there?" a few of them asked. Despite the horrified looks from the teachers, Susie responded so gently but factually, and they seemed completely content with her answer.  We paced ourselves, and took Thursday, Friday and Monday mornings to complete the task, making sure I got to work by noon, and regular shop hours, each time.

Happily, there's usually a little ray of sunshine in each of our posts. Susie was delighted that her brother Tommy flew in from Portland for a few days to hug, visit, laugh, cry and commiserate. Thank you, Tommy!

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Tuesday, May 10th, 2016.  I thought that we had better write an immediate update, because things happened rather quickly today. Time is of the essence, and now Susie's week is filled with diagnostic tests. Tomorrow she will have a brain MRI; unfortunately the "open" MRI is not a possibility, nor is sedation to make the procedure a little more bearable. (She will have an oral anti-anxiety tablet to calm her a little.) I'm not much better, so I can completely relate, but Susie is anxious even when going through an enclosed car wash, let alone a two-foot tube. On Thursday she'll have CT scans along with a tasty barium-infused smoothie, and to round off the week, on Friday she has another liver biopsy. I am so proud of her for taking all of this in stride today, preparing, arranging and scheduling on such short notice.

With all of this done, it's likely that the regimen of the immunotherapy trial will begin on Tuesday, May 17th, and it initially comprises two six-week cycles.

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Saturday, May 14th, 2016. Well, it has been a hard week. All of the above tests/procedures are now behind us. This was really too much, in such a short time frame; Susie managed extremely well. I fell apart a bit this time, perhaps just relieved that the week is over. There will be some more blood work this week, and the intention is to start Susie in the Bristol Myers Squibb immunotherapy trial on the 24th May. It begins with two six-week blocks and she'll be continually evaluated after that. We will watch with baited breath and see what unfolds....

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Saturday, May 21st, 2016. "A mixed blessing?" The week was painful. On Tuesday, Susie received a call from the immunotherapy trial nurse; she was sorry, but Susie would not be accepted into the trial. It was pretty simple, really. The preliminary pathology of the mass in the liver showed only dead cancer cells. Although we heard the words, we were dismayed that, as Susie put it, "her only chance of even a possible cure" had been torn away. I was very mixed up; optimistic that perhaps the chemo had done a terrific job, but upset that her opportunity was lost.

We had to wait until Friday to see Dr. Truong. He walked in and the look on his face showed that he was both bemused and perplexed. "Hello, troublemaker!" he said. He sat at the computer and flipped through various procedure notes and scan results. Clearly, he wasn't expecting the preliminary biopsy result. He explained that there was no doubt, the CT guided biopsy took plenty of tissue samples from exactly where it was needed. Actually, the tissue is still in the hands of the "trial" pathologists, and a final report is forthcoming. He has recommended two more rounds of chemo starting this week, followed by another PET-CT scan in late June or early July. At that point, we might know just a little more about what is going on. He characterized the trial rejection as perhaps a sign of some kind - perhaps divine intervention - that Susie's already compromised system just did not need further aggravation by the severity of the side effects of the trial drugs.

Of course we're elated, but echoing around our heads are his words from months ago. "This is small cell. There's no cure, and it always returns." And so we prepare for two more chemo sessions. The hope will be to really, REALLY do some damage to all of the cancer cells in the liver. The outcome of the next PET-CT scan will help to determine if there are any further treatment options available.

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Sunday, May 22nd, 2016. In light of yesterday's informational text, we need to take a minute to remind you that we are continually supported in so many ways. Humor is interwoven all the time, and lightens the load. Susie has a huge basket of get-well cards that we sometimes revisit, and some just stand out as exceptional or delightful. There was one from a kind second grader at Allen school. Although it's Susie's base school, this student only had occasional contact with her, but it's clear from the child's words just how much she is loved. With privacy issues, we're just going to lift the text, and leave out her name. The front of the card is adorned with rainbows and a heart; the inside shows Susie lying on a hospital bed, apparently with the student offering help, "Here, Mrs. McHugh." It mentions Mrs. Pryor and Ms. Vanausdall who are the two general music teachers and dear friends. The sentiment wanders across the page in grand second grade style, as follows: (You'll have to picture the "0's in the word "YOU" being drawn as hearts.)

"Dear Mrs. McHugh I hope your

kind of {better?} at least I really miss

You. Please get better we need

You. We love you    Mrs.

Pryor and Ms Vanausdall need

You     the hole school loves

You    the Shockers need you

the Jayhawks need you the

Wildcats Need You

The world needs

YOU

I hope you get better ."

 

For those of you unfamiliar with the school mascots named, those would be Wichita State University, University of Kansas and Kansas State University, respectively!!   We're not sure it gets any better than this...

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June 7th, 2016. Yes, yes. It has been a long while since we posted. Those of you following along probably realize that the difficult times do indeed relate to the bigger gaps in our narrative.  It took a while for us to accept that the drug trial was no longer a possibility. It seemed to us that it might have been a lost opportunity, but at the same time we were encouraged to see the pathology of the dead cancer cells. Once again the analogy of the roller coaster ride seems appropriate; as it turned out, Chemo #5 was the toughest round yet. Susie was reminded that the chemo rounds can have cumulative effects, and that the drugs could certainly have an effect on her existing conditions. In addition, the Neulasta did it's job, but it came with serious bone pain and miscellaneous neuropathies just to remind her that it was working.

Susie has encouraged me to keep up with the shop, and it does have the benefit that I can "lose myself" at least for short intervals. Seth Girton, my repair guy, has held down the fort on so many occasions, and customers have been wonderful coping with my shifting hours. Business has been steady, and I'm so grateful. It could of course be better, so if there are any of you feeling inclined to take up a stringed instrument, now would be a jolly good time to satisfy that urge.

One of the hardest things of all for Susie has been to close down her work space at Allen elementary. 34 years is a long time to amass a huge array of props, visuals and instruments essential for the teaching of adaptive music. She physically could not have more stuff, managed so well, in such a small space. The physical sifting through was difficult enough, but the emotional strain of bringing all of those years to a conclusion was huge.  Now it was time to thin things out, and to put a few boxes of her personal toys and props to one side for the grandchildren to enjoy. She wants to leave things tidily organized, methodically labeled and in the very best shape for her successor. This has truly been a heart wrenching episode for her, but perhaps it will bring some formal closure to her career. Her colleagues would of course needle her for keeping everything under the sun - but they knew exactly where to turn for things such as sparkly vests, cowboy hats, jingle bells or decorations for their own programs. Susie would like to stress that she is a collector, not a hoarder. One never knows when the need might arise for a fluorescent wig, or a squirrel tails that hook into the waistband of a child's jeans!

This week we'll review with Dr. Truong on Friday, then brace for Chemo #6 next week. After that, he will kick and scream with insurance to allow another PET-CT scan at the end of the month. Only then will we know just how suppressed the insidious small cell cancer has become, and what might lie ahead.

Susie would like to thank all her past and current adaptive music colleagues and coordinators for many wonderful years! We are certain that we have overlooked thanking so many of our staunch supporters specifically. Although we remember and forget individuals in between these postings, we apologize. Please know that we love you, and that we are eternally grateful to you all.

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June 12th, 2016. The more observant ones of you may have noticed that the title is no longer "Susie's Journey." Susie pointed out that we were in this together, whatever the outcome. Thus the page is simply "Our Journey," perhaps as it should have been from the beginning.

We had another visit with Dr. Truong on Friday. Susie has labs drawn regularly, and her recent results were low on red, white, haemoglobin and platelet counts. After a visit, we all agreed that her final chemo (#6) should be postponed for one week. This should allow her system to stabilize just a bit more to prepare for the onslaught on June 21st. He explained that there was a certain cumulative effect of multiple chemo sessions, that makes bouncing back just a little harder each time around.

Uh, Oh. We are beginning to see a pattern here. By the third paragraph the tone tends to descend a notch or two, and this week is no exception. Our plan was to complete the six rounds of chemo, and then really assess things with a comprehensive PET-CT scan. Unfortunately the health insurance company has a different perspective..."Unless there can be a curative response to the PET scan, the scan is deemed unnecessary." This means that unless there is a procedure available that Dr. Truong could use to correct something shown by the scan, they will not authorize it.

The sad fact is, he has no such tool in his arsenal. With stage 4 small cell carcinoma, hitting hard with 4-6 rounds of chemo is mainline treatment. For now, we accept this, and pray that the chemo #6 will finally suppress the tumors into oblivion. As far as the cancer's continued presence in the blood and tissue, we'll have to keep the faith. A regular CT scan will later assess things within the chest, abdomen and pelvis - and we'll review once more.

All of this was just a little too much for me this weekend. Susie kept up her spirits, and busily worked her way through boxes of her own "school things," purging here and there, and keeping a few things for the grandchildren's amusement. Today I fell apart and cried several times as we'd reminisce over certain events. Yes, it's definitely "Our Journey."

...We wish a Happy Father's Day to our family and friends!

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June 30th, 2016. The last time that I wrote, per doctor's recommendation, the last round of chemo was to be deferred until June 21st. Susie completed that final round of chemo last week, and it was tough. Although she started enthusiastically, once again the steroid component of the treatment threw a wrench into the works; Suz had an allergic reaction. Despite IV and oral antihistamines, it took 12 hours for things to subside. Sleep was elusive for us both during the week of treatment, so the past few days we have desperately been trying to catch up. We had been told that some of the effects of six rounds of chemo could be cumulative, and the neulasta injection really finished things off. She felt absolutely exhausted, along with the "flu-like symptoms" and bone and muscle pain that come along with that medicine.

Susie had blood drawn on Tuesday, and there were no surprises given as she'd just completed this treatment cycle. Chemo induced anemia is rearing it's ugly head again and although her normal blood pressures are always on the low side, there were a few too many under 100 this week. Those too add to the seemingly persistent fatigue. That being said, Suz hustles about doing light cleaning, laundry, errands and loves planning and cooking meals and special things for our grandchildren and family. She is awfully hard on herself and always feels she should be doing more, and often apologizes for having this cancer.

Next Wednesday, we will have CT scans once again. On the following Monday we meet with Dr. Truong to find out those results and learn of current progress. We'll check in again following that...

A special thanks to our friends Steve and Diana Gomez. They are our favorite roommates, and a bright spot in the sometimes intimidating infusion rooms. Steve is fighting his own cancer battle, and the pair are kind, thoughtful and faithful as they too face the challenges ahead. While we're thinking of the Cancer Center medical offices, thank you to everyone who has a role in making our lives just a little better in such difficult circumstances. They just couldn't be any more helpful!

Happy 4th of July, everyone. Our home is decorated inside with the red white and blue flags of both Britain and America - just to keep the peace, you know!

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July 12th, 2016. This might be the hardest submission so far. We saw Dr. Truong yesterday afternoon, and it was clear that his spirit was a little more somber as he walked into the room. Sadly, we have to report that the tumors have grown around 25%, even with the 5th and 6th final chemo rounds. Those rounds were the toughest yet, and Susie just couldn't seem to recover her blood count levels, or get the pain managed as well as she previously had. Recall that we were SO optimistic after the 4th round scans, but now we understand why, even with encouraging news, Dr. Truong gently reminds us of the insidious nature of "small cell." Currently the tumor activity in the right lobe has increased, but the middle liver activity has actually enlarged by three times lengthwise.

We are devastated. I was SO certain that we had at least suppressed the activity for a period of months. I was SO sure that Susie could have a spell of low-pain contentedness during which time we might dare to enjoy a day or two away... - and time away from the chemo rooms! It was the first time that either of us had cried in the office. We couldn't hold back the tears and emotion while absorbing all of this. We were reminded just how wonderful Dr. Phu Truong and his staff are; they hugged and supported us, saying how sorry they were, and cried a little with us. They do have a soft spot for Susie. Throughout all of this she has maintained a cheerful disposition, and particularly tries to lighten up the waiting room at the cancer center. Even despondent souls have to muster a smile when Susie is in the room. Her self deprecating humor in this trying time is enjoyed by many around her. Always brightly attired, and color co-ordinated, she gives advice to other ladies about hat and scarf bargains to be found, and she is loved. She always makes time for small compliments toward staff too, and I know it's reciprocated and appreciated by them.

Although the doctor would have liked to have started the next step immediately, he explained that insurance had not yet agreed to cover what he called "second line chemo." This involves five straight days of chemo with a different drug, followed by a Neulasta auto-inject on the sixth day. All being well, she'll start on Monday 18th. Time is clearly of the essence now, and we pray that insurance relents. A second round of the same would follow on August 8th, and then some more scans which would put us toward the end of August before we really know more. If this new regimen doesn't work, but her health is still reasonable, we would have one final option. Dr. Truong would beg Bristol Myers Squibb to provide the immunotherapy drug pair (still only in phase three trials for small cell) to Susie for independent treatment.

Our family and faith continue to sustain us, and Susie has her beautiful big blanket, magazines and snacks at the ready to hopefully begin on Monday 18th. Thank you, all, for your continued support!

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July 26th, 2016. There always seems to be a reluctance to post when things aren't going so well. How much do we tell? How soon? With so many people praying for us and encouraging us, it's hard not to have an underlying feeling of somehow "letting down the team." I know that this is always on Susie's mind to a greater or lesser extent...

Finally, the insurance came through in their own inimitable eleventh-hour style. We were cleared for two rounds of the second line chemotherapy called Topotecan. Susie decided that this beautiful name simply must have Native American roots; given that this culture is steeped in reverence for all living things, we did a short, sweet appeal for some additional spiritual guidance. Seriously, we were advised that this new drug would bring considerable tiredness and cumulative malaise by the end of the five days. On the sixth day there was Neulasta, and oh, my, did it hit with a vengeance this time. The physical and emotional exhaustion of the week was capped by flu like symptoms, bone marrow pain and fatigue. Once again, there was an opportunity to start the familiar guessing game. Is the pain just the Neulasta, doing it's job of tricking the bone marrow into producing white blood cells? Is the pain the cancer growing, in spite of the Topotecan? Or, in Susie's hopeful mind (but perhaps as an unscientific theory) is the pain an indicator that the cancer is dying off, destroyed at last by the best that medicine can offer? Such is the turmoil that swirls around us every day, and plays with our minds as we desperately try to make sense of this disease. Crying helps a tiny bit, then a prayer of gratitude, some hand-holding, followed by a smile and a big hug...

We do know that so many friends want to come and visit. The difficulty is to find a little window of time where the stars align, and her body is calm, and her (often low) blood pressure is stable, and the chemo-induced anemia has subsided so that she's not having dizzy spells and stamina issues. Honestly, when this occurs, we selfishly race to see the grandchildren. Even a joyous occasion like this can be short-lived, and she'll be happy but worn out as we head home. Be patient. She will let a few friends and family members in, or meet for a muffin, when possible. Above all, she doesn't want friends to think that she doesn't value them, or want to see them.

Labs were drawn today, and Susie is praying that she will build up some stamina (or, as she says, "get her groove back," before the next round of treatment on August 8th...

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August 10th, 2016. What a rapid turn of events. We had a suspicion that perhaps the second line chemo was not doing all that it could. Susie was struggling with more pain, and as we look back, she felt that there was more pressure and pain toward the center of her abdomen. Three days into this chemo session, she was really hurting and knew something wasn't right. I had noticed that her eyes were very slightly yellowed, and the nurse agreed.   With an overview of her situation, Dr. Truong decided to run a liver screen to see how the liver was acting. Considering the results of elevated bilirubin levels, he decided to abandon the chemo, and then sent us to have a CT scan to see how things looked. Susie is always intuitively aware of her own body, and she was, unfortunately, correct about the increase in pain. We were intensely sad to find out that there was indeed pressure caused by increased tumor size, and worse yet, new tumor activity. The scan showed dilation of the bile duct, which indicated a blockage or restriction further down. We were, by this time, home resting and contemplating whatever might be next, but we were rudely snapped to attention by the phone call from Dr. Truong's nurse. We were instructed to head to hospital immediately, probably for a procedure to see if they can possibly open up the bile duct with a stent. And that is our story so far. Susie is settled in to our hospital room, and we can only assume that her ERCP procedure will be first thing in the morning. All that we need right now is some quiet time together and of course your prayers for a successful "duct reinforcement" to allow her system to function reasonably as we enter the next phase. 

We love you all, and thank you so much for your love, messages and care as we float along. We will absolutely post something by Friday 12th to keep everyone up to date on our situation...

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August 12th, 2016. Wednesday, as we reflect, was a little demoralizing. We headed quickly to Wesley, assuming that her procedure would happen fairly promptly. Not so...we had forgotten that we were now on "hospital time," a time-warping phenomenon that could have vexed Einstein. The hours dragged past, and at 10:00 pm the very hungry Susie was finally allowed to eat and drink something, clearly acknowledging that the surgery would take place the next day, Thursday. Well....it was almost as bad as yesterday. They didn't do the procedure until late, and Susie was starving and exhausted. She had been NPO (no food or drink) just in case they could squeeze her, standby-like, into their hectic Thursday surgery schedule; somehow twenty hours had passed since her last meal the night before. The idea was to insert a small tube called a stent into the lower end of the bile duct where it meets the duct from the pancreas. Dr. Salyers had thought 35-40 mins for the procedure, and so by one hour I was pacing like an expectant father. At an hour and twenty minutes, he emerged and explained that two stents were used and the discovery of an oddly-angled duct had exacerbated the procedure considerably. Two stents were used to assure sensible drainage of the liver area.

We were told that her bilirubin levels had risen through 4, past 5 and this morning past 6 - and that these numbers had to steadily decline before she could be released from the hospital. Today we also understand that the cancer lesions and additional lymph nodes are encroaching on that same area and may be partly to blame for the jaundice that we noticed in Susie's eyes and skin.

I've done more than my fair share of crying this afternoon. The kind young priest from the Cathedral stopped by for a visit and some prayers, and gave her the "anointing of the sick." (Not last rites!)  We have held hands and talked a lot about where we go from here. Step one, then, is to diminish the Bilirubin levels to normal, and then she might return home and regroup. Also today, Dr. Truong came by, and so step two would be his intention to obtain compassionate use of the two immunotherapy drugs that might at least buy Susie just a little more time. We certainly support and endorse his encouragement and recommendation. We too have a fervent intention to accept any miracle that might be bestowed upon us...

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August 20th, 2016. We had a heartbreaking morning at the oncologist's office on Friday. Dr. Truong reviewed events leading up to Susie's hospitalization; the chemo drug Topotecan not working at all for rounds 7 and 8, and the tumors showing growth as well as the appearance of new ones. He related that the bilirubin continued beyond what we were told, 6.6, to a very serious 7.2 before the stents had been inserted, and essentially those had saved her life.

Susie now has pain throughout, from her chest to her pelvis, along with chilling during the day complemented by nighttime sweating. She suffers shortness of breath, and other unpleasant symptoms surface occasionally to add to the burden. Dr. Truong explained that most of this was indeed due to the aggressive cancer, and that Susie was in decline. "Decline?" I think the word hit us front and center, and honestly we were so taken aback that we didn't finish our prepared list of questions. He further characterized her situation as "desperate," and proceeded to bring us up to date regarding the Bristol Myers Squibb compassionate care request. He said that one drug, Opdivo, had been approved in this way, and he hoped that the second, Yervoy, would be approved very soon. These two have shown promise with some other cancers, but phase III studies are still underway with Small Cell Carcinoma. If all goes well, they will contact Susie as soon as Tuesday to commence immediately. To put the success in perspective, there can be a 20% (One in five) positive response when these two drugs are combined, perhaps extending life a number of months.

And so we continue to regroup on her meds to keep the pain under control, and with much trepidation await the news next week, and more unknowns. We try to remain prayerful, although our spirits are somewhat broken right now.

Thank you, all, especially those that we may have overlooked with our "Thank-you's." Just know that we could not be more grateful for your support. Do keep an occasional eye out for an update here; we will continue, but they may become less frequent, or indeed shorter, as we proceed...

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August 24th, 2016. Yesterday, we found out that Susie had been approved for both Opdivo and Yervoy infusions today. These essentially work to encourage the immune system to work harder on the cancer cells. When taken together, there are all sorts of side effects to consider; a baseline health profile is made so that any deviations can be quickly picked up by the nursing staff.

Susie's body is somewhat compromised from almost eight rounds of chemo and a couple of incidental hospital stays. She is extremely fatigued, and sadly aware of not only the growth of the original tumors, but the new ones that have developed on the left lobe of the liver. Although these are phase III study drugs, they haven't specifically been approved for her diagnosis of small cell carcinoma; however, they have been shown to be of tremendous use in certain other cancers such as renal, malignant melanoma and brain situations. We remain enthusiastic as always, and we'll post again soon. Susie wants everyone to please storm the heavens that these drugs might open the door to a miracle for our family...

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August 27th, 2016. The immunotherapy infusions were not simple. We listened to the necessary preamble regarding the side effects of each, and how that the two taken together had even more side effects to consider. They reinforced that we were to call their 24hr emergency number if any of these side effects occurred. We have never used this number, so we're sure that they'd listen attentively if we actually did. Susie felt a lot of body stiffness during the infusions and nausea too. It took about four hours, and we arrived home at supper time on Wednesday. On Thursday morning she felt weak, and a little differently than she had with Chemo. She did some light chores and laundry, got some things ready for supper, but felt "odd." That night we set alarms as usual for late night pain meds, and when she woke, a fever commenced and she was chilling and having wild muscle spasms. With consistent temps over 101, we had to call as we knew they would be horrified if we did not check in. Shortly after, we used the emergency number, and Dr. Truong called around 5:00am. (Sorry, doc!) We did have an appointment set for late morning, but he told us to get in to the cancer center early and they did all kinds of cultures and blood work. Susie was extremely weak and it seemed to take great effort to slowly walk from the parking garage to the office. Our appointment turned into a six-hour marathon, where they gave Susie IV hydration, steroids and antibiotics to try to stop what Dr. Truong thought was a reaction to the immunotherapy drugs. Our afternoon was capped with a chest X-ray at Wesley for good measure, and we arrived home just before 3:00pm. We ate a very light lunch, and went to sleep until 6:00pm. We have lost so much sleep since the diagnosis...

Susie did have a four hour block of sleep last night, which she was very grateful for, and did doze on and off besides. Blurred vision, muscle pain and other side effects may lessen as this coming week continues. We're not too sure what to make of things right now, but her temps are staying down, and we are again taking things one day at a time. Her goal for tomorrow is simple; to just have enough strength to attend the 4th birthday party of a granddaughter. All five grandchildren will be there, in an air-conditioned shelter so weather should be tolerable. It doesn't seem like a big deal, but with the setbacks we've encountered, we take nothing for granted! On Monday she has more labs and an oncology appointment, and hopefully a good week ahead!

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September 6th, 2016. We last wrote on Saturday, glad to be past the trials of Friday. The infusions to counteract the immunotherapy side effects had included an antibiotic, but Dr. Truong felt that an oral antibiotic would be a good idea, just in case there was an infection lurking somewhere. Susie had two doses on Saturday, and we looked forward to a bit of stability. Those of you who have graciously followed along on with us won't be at all surprised to hear that things didn't go as planned. As we headed for bed, Susie seemed anxious when she least expected. Within an hour, she was experiencing serious hallucinations. I have never seen anything quite like this; these images were absolutely real, and frightening to her. Sometimes her eyes were closed, sometimes open. Later, she described being trapped and unable to call out for help. She was obviously in distress, and so we shared another 8-9 hours of sleeplessness. There was plenty of time to Google the side effects of steroids, and sure enough this fit the puzzle. But...why had she not had any issues the night before - or on any other occasions that steroids were introduced? What was different about her medication list for Saturday? Only the antibiotics. I had absolutely no idea that an antibiotic could have such a profound effect, but there were so many examples of patients experiencing similar responses, it was hard to ignore. We did make another call to the Cancer Center emergency number, and another doctor suggested that the steroids were to blame. Because he was only 49% convincing in our brief survey, Susie and I went with our gut feeling and discontinued the oral antibiotics anyway.

I was pretty sure that Susie would not be attending our granddaughter's 4th birthday party scheduled for the Sunday lunchtime. Susie was pretty sure that I was wrong, and somehow, hanging by a thread, we made it on time. It was a delightful birthday, and all five of our beautiful grandchildren were in attendance. We shared so many little hugs with them that any pain or tiredness temporarily vaporized. We didn't stay too long, but it was enough to fill our hearts with more than enough love for the rest of the day. Somehow we managed a reasonable (now regarded as 4-5 hours, punctuated) night's sleep later on. The dreaded hallucinations did not reoccur.

We had an appointment with Dr. Truong on Monday 29th, and after some conversation, he agreed that it had been OK to stop the antibiotics, given the reasoning. He's also aware that Susie is the Cancer Center's "problem child" of 2016, and is no longer surprised by her inability to be medicated normally. (For years she has used pediatric/geriatric small doses) He knows that she is in considerable pain, and believes that it is indeed the immunotherapy side effects that are responsible. He decided to put her on a "burst" dose of Prednisone to reduce the inflammation, and we have seen a little improvement this week. She is still hurting, but not quite with the burning intensity as before. Somewhere in our recollection we enjoyed a grandson's wonderful 4th birthday party at a city splash park. (This was a cousin, not a sibling, of the aforementioned granddaughter.) It seems that we are passing the joyful annual family milestones but gently wondering each time if it might be the last for Susie. She handles all this with remarkable composure; we swim along through crying and laughing together alternately.

We're not sure quite what to expect in our visit next week with Dr. Truong. If all is well with labs, Susie is due for the second round of immunotherapy infusions on September14th. As usual, we'll have our list of questions in hand; the questions and responses are getting tougher each time...

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September 13th, 2016.  It will not have escaped your attention that when the going gets tough, the blog goes silent. The last week has been such a difficult one, it's hard to even pull together the notes from which to start. We didn't make it to the planned appointment with Dr. Truong; instead we contacted the office sooner, as Susie was exhibiting signs of bilirubin rising once again. After some labs were done at the office, Dr. Truong  recommended that we check in immediately to Wesley. What followed was so demoralizing for us, we are still struggling with how things developed. The next CT scan clearly indicated that the two earlier stents were distended or impacted by the surrounding cancer, and the ducts further up in the liver were blocked. They also noticed that the original tumors had grown, and even that new ones were developing. It was determined that they should try to insert a drain into the right lobe of the liver, to allow the bile to flow into an exterior bag. This was done successfully on Friday, and the drain was at first very productive.

Within 24 hours, Susie was experiencing excruciating pain with the tiniest movement of her body. She stifled a scream when simply trying to make herself more comfortable. Dressings were changed, and the fluid was encouraged out by "milking" the tube a little to encourage flow. Even though the bag was now filling with blood, the decision was made within the hospital to wait and see if things improved. Susie had pleaded with those around her that something seemed very wrong. I felt helpless as Susie had a totally sleepless and very painful night on Sunday. I laid down around 3:00am and Susie tried to remain as still as possible so as not to encourage any more pain. I woke up to the sound of a very shocked nurse discovering the hemorrhaging from around the drain. Things happened promptly after that, and to make a long story short, it was found that the drain had pulled out from the liver and was tormenting everything around it. The staff in Vascular Radiology that did the drain insertion was extremely helpful and kind as they tried to do a revision. Unfortunately the incident had caused a hematoma in the liver, and one in her pelvis. Because they could not access the same region, they decided to schedule an attempt to insert another drain, this time in the left lobe of the liver. Even though she would normally have returned to her room, they held her within the department to restrict her movement and keep her comfortable. What an extraordinarily nice crew. Later on, the procedure went well, and has since been producing what it should from the liver. When Susie finally returned to her room, we discovered that she was scheduled for a radiation session. Radiation? Oh, yes. Dr. Truong had encouraged communication with other doctors, and although radiation in general might be futile with "small cell carcinoma," these days the accuracy of the radiation is phenomenal. Dr. Luter explained to us that she thought that it would be possible to attack the cancer around the ducts, and perhaps free the flow of fluid. Given that the internal stents are now once again showing flow, she was right. The first two doses were very strong; the ten subsequent ones are slightly less so, but will focus beams from different angles to converge on the cancer adjacent to the ducts. This process will allow us to go on and continue the immunotherapy drugs to work on a troubled but functioning liver. We are so very grateful for the courtesy, pleasant manner and professionalism shown by everyone here at Wesley.

When she finally made it back to the room last night, they proceeded to transfuse two units of blood as her hemoglobin levels had dropped because of the blood loss. It was one of the hardest days ever for her, and she is completely exhausted. Nonetheless, later this week they will attempt another time to access the right lobe of the liver with a drain, hoping that the hematomas have shrunk a little. Apparently it may take several weeks for these to be absorbed slowly by the body. We were told today that these drains can be life-saving, but are they are very delicate, and it's not uncommon for them to come out completely. In Susie's case, hers had come out of the liver but remained inside her body causing the intense pain.

We've been pretty quiet recently, sharing information with family and a couple of friends. At this time, Susie wants no visitors - even family - as we make our way through her trial. She really needs quiet time as she reflects on all that has happened, and what lies ahead. We ask for your love and prayers, and to limit texts and calls. She faces ten rounds of radiation but she is tired, bruised and a very jaundiced right now. I can continue to receive texts and emails on her behalf so that information may be disseminated reasonably, and I will try to post here now and then for clarity.

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September 16th, 2016. Today, with immense sadness, and with doctor's guidance from four teams, we made the decision to call Hospice and ask them to help us to make the transition to our home. The teams of doctors have tried all reasonable avenues with this insidious invasion of her liver, but the cancer has become too involved. Susie's bilirubin levels soared and would not diminish despite several attempts with stents and drains. We thank the wonderful folks at Wesley who made our stay so comfortable even in such a bad circumstance.  Susie has tried so hard, and has kept such a positive attitude throughout, but it feels now as if her body has betrayed her. Hospice has already visited with equipment, medicines and advice; now comes the trial of finding a balance of medicines to manage pain and functioning. We were advised that we should assemble family members this weekend as her stamina has been diminishing.

You have all made our 'annus horribilis' so much more manageable in many ways. The GoFundMe account (of which I was so dismissive...thank you, Cindy!)has made the endless medical bills a simple occurrence rather than a stressful burden; your prayers have floated us along in times of need; and your flowers and gifts have reminded us just what a remarkable community in which we live and work. We would like to have a special mention of friends and family that have doggedly stayed with us, even as we seemed to push away - but we'd be sure to miss someone, so we leave it to you to know in your hearts what amazing support that you were.

We thank you from the bottom of our hearts, and when I find some, I might add a few words later.

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October 2nd, 2016.  Susie is a fighter. As one of the physicians pointed out, she's 90% healthy with the other 10% occupied by a damaged liver which is hanging by a thread. Clearly she is in decline, but still makes the effort to struggle to a favorite living room seat for meals, or to the restroom. She still has an external liver bile drain, and is catheterized, but tries not to let those get her down. I cry multiple times a day, and she reassures me that it will all be OK. To which version of "OK" she is alluding, I don't know. We are constantly adapting pain medication in an attempt to let her sleep at night time. No great luck so far on that, with as many as eight to ten waking interludes during the night.

The Hospice nurse checks in by phone daily, and will stop by if necessary. She and her colleagues are available 24/7 for a visit or consultation and are a remarkable crew. They provide medicines promptly, and have an arsenal of guidance to tailor things to a particular patient. I put Susie's medicine schedule on an Excel spreadsheet, and she is constantly referring to it to keep abreast of what's going on.

It's likely that this note will be the last one until circumstances change. Thank you for following along, and thank you too for patiently allowing us to follow through ourselves, or at least with some close family members. It was Susie's wish that she received so few visitors, despite so many of you desperately expressing wishes to see her. Please continue your prayers - specifically centered around the best resolution for Susie at this time...

'love you all, so much...

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October 14th, 2016As I write this, I realize that I haven't slept in my own bed for almost five weeks. Ten days in the hospital room on the loosely-named sofa bed, then three weeks on the living room couch, across from Susie in the ex-dining room in her hospital bed. We have done remarkably well, but clearly Susie declined somewhat over the last few days. Her brother Ken and Sister Ruth have stepped in for me most days as I have tried hard to open the shop in the afternoons and on Saturday mornings. Seth, my repair guy sidekick, has kept doing productive repair work in the mornings, paying for himself and keeping the lights on.

Perhaps everyone except me was aware that I was becoming sleep deprived; somehow one trudges on with the job in hand regardless of the difficulties. I attribute this trait to my mother who was widowed at the age of 36 with five children. Grim determination and stubbornness must have played a role back then, and I just assume it's in my genes.

Our Hospice nurse Bri summed things up in short order this morning. Susie had been up twelve times since 1:00am, after a good solid two hours of sleep. I know how many because that's how many green disposable bed pads I had changed for her. This wasn't the first night of such restlessness, and Susie was becoming less and less coherent too. Bri made the call taking in mind my tears and broken voice, to transfer Susie to the in-house facility for Harry Hines Hospice, where I sit writing this. They will streamline Susie's medicine schedule, and in a day or two summarize our situation. On Monday, we will decide if she stays, or returns to our home. My part of the deal is to get some real sleep, which tonight will be at home in a real bed. Thus I'll be better equipped to manage things if and when she comes home.

The facility is quiet and comfortable, with a staff who are calm and pleasant with our every need. I am SO grateful for the respite opportunity and look forward to the week ahead. I will be open at the shop tomorrow, Saturday, from 8:00am to Noon. Hopefully I can make up for the sudden daily closings on Thursday and yesterday.

A special wish goes out today to our son Iain, who with his son Henry, will jointly "celebrate their 40th birthday" today. Iain contributes 34 and Henry 6 long years.

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October 18th, 2016. My sweet Susie just passed into eternal life a little after 5:00pm. We are jointly so sad and yet relieved that her pain is now over. Thank you, everyone, for everything that was done for us....we love you all.

 

SUSAN KATHLEEN (SHERMAN) MCHUGH  April 7th, 1957 - October 18th, 2016.

The service will be at Blessed Sacrament Church on Saturday 29th October at 9:00am. Following the service, there will be an informal reception downstairs with coffee and cookies. The family will depart at around 11:00am for a private interment at Ascension cemetery.

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