The Week To Forget That I Will Always Remember!

It was difficult to write the post about Melinda stopping treatments for her cancer. It is even harder to have to tell you of her passing night before last. She died right at 11 pm on Thursday, 22 September after only 30 hours at the in-patient hospice... While it was tough to watch her decline so rapidly, she was surrounded by friends and family and all are relieved that her pain is over and the rest she craved is finally at hand.

Some might want to know some of the details of her last days. After deciding to stop treatments on 15 September, we got a referral to Casa de la Luz hospice and a nurse from the facility came by for evaluation the next morning. She talked to us about policy and services and about how it all works. We were a little concerned that they wouldn't permit her fluid infusions, that had always perked her up and made her feel better. Since they were considered "extending life" they wouldn't be permitted under hospice care. Because Melinda already had an appointment for fluid infusion on Saturday, 17 September, we held off signing up.

Our hours at the cancer center were very nice. After our 3 years of regular visits there, all the nurses are like family. Knowing that Melinda had stopped her cancer treatments, the weekend crew all came by and talked to her and made her as comfortable as they could. It will be hard to not see them in the future now that Melinda has passed.


We got thru thu the weekend just fine. After the fluid infusions, you would expect a lot of peeing going on, but evidently with her disease progression, it showed up as edema in her arms and legs - little to no use of the commode.  We signed up for hospice on Monday morning, they delivered a hospital-style bed, went thru her meds, discarded the ones she didn't need (all of them!), and were supplied morphine drops for her pain control. We started that Monday night (19 September), and man, they worked great - no pain, but zonked her out big time. The next morning, I panicked when I almost couldn't wake her up. I ended up calling her sister Maj and told her if "she wants to have a conversation with Melinda, she better get here soon"! She jumped on a plane and came that night! Luckily, I caught our nurse friend Erica at work that Tuesday - she would stop by after she got off work at the medical center and sit with her while I picked up Maj. Fortunately the initial exposure to liquid morphine does really knock you out, and she got a little more clear-headed thru the day. By the time Erica arrived at 8pm, she was still pretty chatty. Things were good enough that Erica even took a photo of the two of us before I left to the airport. At left, I licked her cheek to make her smile as the photo was taken. Maj arrived, and man, the party started - talking excitedly into the already-late evening hours. I finally turned into bed about 1:30 and warned the girls in the slumber party to get some sleep, and "no talking about boys"!

The next morning (Wednesday, 21 September) another surprise! Our "mother-in-law" Betty stopped in! Now Betty is the mom of my first wife Vicki. You would think family dynamics would have stopped that relationship cold, but Betty and Melinda hit it off like gangbusters and we're still one big happy family. Ninety One year old Betty left Columbia, SC at 7am to pick up her daughter Susan in Dallas and get to Tucson by 11:30. They walked into the house about 12:45, and man, did that bring a smile to Melinda's face! I had a meeting with a lawyer scheduled so had to leave for an hour or two, so that is how I left the house - full of happy women.

Upon my return at 3pm, an emergency had occurred. Melinda had been hungry (the first time she expressed hunger in weeks!). They were feeding her a pear snack pack when she vomited (not particularly unusual for her), but this time she aspirated some of the fluid/stomach contents. Turns out that is a bad thing - stomach acid in your lungs will get you with pneumonia pretty quickly if your immune system is weak. We called the hospice nurse (not allowed to dial 911). Melinda was making gurgling noises, and breathing with difficulty. It sounded like there was something in her throat, though in reality was much lower. We tried sitting her upright and lying on her side with no effect. The nurse finally arrived, and after evaluating called for oxygen delivery, and checked on an in-patient room, which was available. Oxygen and patient transport arrived the same time and before I knew it, I had an empty house that felt very hollow...

I fed the livestock (our 8 cats) before getting up to the hospice about 6pm that Wednesday. She was tucked into a comfortable bed and looked pretty peaceful. She still had the labored breathing that sounded gurgly, but was surrounded by Betty and Susan, friend Donna from Phoenix, Roger, Maj and myself. She was still speaking with difficulty, and always shook her head when queried about pain. Late into the night everyone eventually left, as did I for a while. After about 45 minutes of sleep, I got a call from the nurse at hospice. Maj had thought there was a change in her breathing. I showered to wake up and went back in. She seemed about the same to me, but getting a response from her required "getting in her face" and speaking loudly. The last words I under stood were about 3am on the 22nd... I somehow wanted to record the moment - her sister and I at her sides, holding her hands. Maj was sound asleep when I took the left image, and I one-handed a shot at right with my hand in hers. I didn't record her face, as her features had changed from the beautiful woman we all knew...

As night changed to morning our friends returned to keep us and Melinda company. The nurses rotated in and tended to Melinda's needs and patiently answered our questions. Betty and Susan left for the airport to return to Dallas at 11. When informed of their departure, Melinda opened her eyes and made eye contact for the last time...

After that it was just a matter of time. The breathing always seemed difficult, but the gurgling stopped. Around 10pm she started skipping breaths, and right at 11 she breathed her last and the nurse came in to confirm her passing. We didn't stay for transport to the funeral home, but the attendants who saw her off on her earthly plane (Maj, Donna, Roger and me) left for eventual sleep among lots of hugs...

We're making final arrangements - tentatively narrowing in onto Saturday afternoon, 1 October. Tough to make arrangements on weekends, so can't confirm exact times, but will likely be at Abbey Funeral Home's chapel, and are thinking of a reception afterwards at el Saguarito restaurant at Campbell and Prince afterwards. It was her favorite local place to eat when she had an appetite, and they've agreed to do it for us.

I put an announcement on Facebook and the emotion and testimonials have poured in from her hundreds of friends. If I can, I may read some out loud at the memorial service, though it seems I choke up pretty easily when trying to talk. But what I've taken away from those expressed thoughts is that Melinda brought out the best in everyone. Tuesday afternoon her primary doctor made a house call (!), unusual enough, and just sat and talked to her for 30 minutes. Even her home health care nurse that had stopped by once a week the last month stopped by the hospice for a visit. She didn't need to, but knowing Melinda made her WANT to. I know that over the years she has brought out the best in me too. I know I am a better person for knowing and loving her. But from the outpouring of emotion I see from across the country from people who know her, they are drawn to her and are made better...

So what did she get from me? She always told horror stories of her first husband, whose marriage lasted less than a year, and ended just as we started dating. I can hardly believe some of the stories, but evidently I'm better than Ralph... Perhaps it was the astronomy I exposed her to that provided a "big picture" of her place in the universe. I'm going to close with a video that just today appeared on Phil Plait's "Bad Astronomy" blog. It is an amazing video and the quotes from the interviewees while being filmed under dark skies is really why we continue to share the views and look skyward. So think about Melinda, what an incredible person she was, think about how she affected you. Feel free to comment if you would like. And keep looking skyward and be amazed...


Infinity ² from Uncage the Soul Productions on Vimeo.

The Battle - Winding Down...

We've been a little mum on Melinda's cancer battle front. Her last PET scans in June showed continued progression of the disease. She had some radiation therapy which helped relieve some of her back pain, caused by the tumors in her spine. The relief was short-lived, however, and her oncologist got permission for her to get Opdivo - the new miracle drug that works with the immune system. However it has not been approved for small-cell lung cancer and Medicare refused to cover it. More delays and finally Bristol-Meyers Squibb agreed to cover the costs and she was to start last Thursday.

But meanwhile, the cancer just was sapping her energy and one of the side effects of nearly any chemo is extreme fatigue, and she couldn't imagine another battle with chemo side effects. So when we consulted with the oncologist, she agreed that stopping treatment was a reasonable decision. She had fluid infusion to perk her up and we got a referral for a local hospice to assist with her care. So there we are - you are now up to date!

We've contacted family and our local circle of friends, so most everyone is aware of her decision. We signed on with hospice (Casa le la Luz - house of the light!), and instead of the Vicodin that we've been using (mostly effectively) to control her pain, we've moved to an alternative because of the toxic dose of acetaminophen she was getting. Her first night on liquid morphine drops went well, so that concern has passed. Hospice aims to keep the patient at home, so I'm here full time now taking care of her. Sister Maj is returning soon and will give some relief. At left from a week ago, Mia made herself at home on Melinda's lap while she napped. It seems to be where Mia wants to park, so lately we've been keeping her in her bedroom so as not to bother her...

While I've never seen her back away from this battle, she is just too exhausted to continue. We've always done what the oncologist had suggested, so she can't be faulted for finally getting a break. Three years and 5 weeks, spent fighting cancer every day is a long struggle and she deserves her rest. I'll keep you updated on any changes, but for now she is at home, with her beloved cats and friends around her. And she is at peace both with her decision, and with us to stop pressing her to continue the fight.

Melinda Update

It has been a week already, so time for an update on Melinda! Seems like a bad remake of "Groundhog Day" with an endless repetition of the day before... Our last post gives a good synopsis of the events - turns out her infection caused her to go into septic shock, due to the pasteurella and her lowered immunity from cancer treatments and radiation therapy. Fortunately she was only in the ICU for 48 hours, and has remained since then in a normal hospital room in the oncology ward. Starting Wednesday she has been able to continue her radiation therapy, and after today's session, only has one left on Monday. With the proper antibiotics she has responded well, and the 20cm (8") red blotch marking the infection in her leg has all but disappeared. The original plan was for her to be released today, but several scenarios has caused a rethinking of these plans...

For Melinda, the highest priority has always been to follow the course of treatments outlined by her oncologist. In her mind, nothing should stand in the way of that battle that has raged for nearly 3 full years! The plan was to discharge her to an in-patient facility for rehab, since she has effectively been bedridden for a week now. There has been no attempt to administer rehab or occupational therapy while in the hospital. Unfortunately, all the rehab places do not have the mechanism in place to allow transportation to her radiation or chemotherapy treatments. As a result, Melinda turned down that offer and then the plan was to discharge her to home, with home health-care nursing visiting every day. Of course, since she has not been up, I'm reluctant to take on the responsibility of assisting in her mobility around the house to use the bathroom and other activities. We got to the point that the home health team brought her meds over to us and in the image at left, Danielle is instructing Melinda in giving herself the antibiotic and flushing her port afterwards...

But Melinda hasn't been feeling well the last few days and really didn't want to come home either.  So her doctor approved her staying until Monday.  She will get her last radiation treatment Monday morning, then be released to a rehab facility, and hopefully recover in the week she has off treatments until her chemo starts up.

So that is the plan - a couple more nights at Banner University Medical Center, and some more in a rehab place.  We both feel better with that plan.  Note she has been getting near-endless interruptions to her rest from calls and visitors, so I've taken to carrying her phone with me so as to not wake her while she is napping.  So if you try calling, don't be surprised if I answer!  You are officially up to date!

There is a Plan!

It has been pretty quiet here on the blog... There are a couple of reasons - my computer was down and it wasn't just the screen connector as it has been the last few times, but it actually needed a new screen! $100 for a screen and the same for installation and verification and it is good to go again.

Also, it was a transition time in Melinda's cancer treatment. News comes in slowly, typically every 2 months when another PET scan is taken to measure how the last 2 cycles of chemo have worked. If tumors are smaller and less numerous, we continue what we've been doing. More tumors and bigger, and it is on to something else to try. Mostly lately is has been the latter and we feared that one of these times our oncologist would run out of things to turn to and we'd be facing a dead-end alley as far as options. So it was with some trepidation that we finally saw her yesterday after Melinda's latest PET scan last week.

The result is what we didn't want to hear - the oral chemo she has taken the last 2 months appeared to do nothing for her small-cell cancer. Personally, I wasn't optimistic as it had been developed for brain cancers, but we've done nothing but do what the doctor suggests... The tumors are bigger and brighter. Her back pain that has been the most debilitating is evidently NOT currently the result of her fall from September of 2013, but from near-doubling of an invading lesion near her vertebrae. The image at left is a comparison of the PET from a year ago, and the two most recent scans. At the lower curve of her spine is the whitish-orange of what we're up against...

But while the cancer is worse, at least Dr. Garland reached into her bag and pulled out a plan! We're going back to IV infusions, this time of the drug Taxol, used for the treatments of solid tumors.  The descriptions of side effects are scary, but then so are the list of what might happen for most chemo drugs.  She has fought through all side effects like a trooper, and is ready to start tomorrow!

But first, another wrinkle! The conglomerate tumor near her spine has been deemed close enough to the surface to try to hit with radiation. So tomorrow they do a "test run" to map out everything, and they'll be ready in about a week for 10 straight days of radiation. Then the plan is to take a week off, then start the Taxol on a once-per-week schedule for 3 weeks, then a week off. Two cycles of Taxol and another PET scan come late September or so. A long time to wait for news of progress, but hey - we're just thankful there is a plan! Dr Garland is also optimistic that the FDA will approve some of the new immunotherapy drugs for trials on small-cell cancer, so another thing to cross-fingers for. Some of the results applied to some cancers have been sounding miraculous, so perhaps something to look forward to!

No News - Not Always Good News...

I apologize for our regular readers for not posting regularly. Here we are 3 weeks into April and only our 3rd post! I've not been inspired to write lately as Melinda's latest PET scan results were less than impressive. And the oncologist visit was uninspired. After getting Melinda's vitals and report on how she was doing, she informed us there continue to be more tumors and increased activity. But for the first time she added that "You've had a good run", and that she "has done better than most". When she said that I really hated her - and that is my fault. We've always been impressed with her matter-of-fact attitude and blunt opinions, but after 2.5 years of optimism and hopefulness, the sudden turn made me angry. For the first time she didn't have an option for us - no rabbit-out-of-the-hat chemo drug for us to try. She needed to consult with her pharmacist to get an option. She asked twice if we had any travel plans, as if to imply that maybe we should be making some... And for the first time we walked out of the cancer center (always lower case) without knowing when we would be back. And besides the small-cell lung cancer to worry about, her dominant issue lately has been her increasing back pain. After a compressed vertebra a sixteen months back and steroid shots a year ago, she's been pain free, but it got so bad she had more injections last week, but they have had little effect on her pain.

A couple days later and we got the new regimen. An oral chemo pill called Temozolomide, generally used for brain cancers, now for some reason to be used on her small-cell... For the first time no need to go to the cancer center other than labs and doctor visits. At least it is nice to have a plan, but it is sort of sad to go thru chemo without seeing all our nurse friends we've come to love over the years to administer IV drugs. That has been about the best part of cancer center visits other than the hope something good was being accomplished. Now we'll miss our friends and the hope is starting to fade too...

Notes From The Battlefield!

If it seems like it has been a long time since we've blogged about Melinda's cancer battle - it has! After 2 PET scans that showed impressive improvement in decreasing both the size and numbers of tumors of her small-cell lung cancer, her oncologist gave her the month of November off treatment to recover, and restarted another set of cycles in December. Just today we got official word from the latest PET scan (taken every 2 cycles - about 2 month intervals) from a week ago.

And the word isn't good... Increased metabolic activity, and more tumors are visible. Dr. Garland is quick to point out these spots aren't "new", even though they haven't been visible the last couple scans. Going back to the Summer, these are old spots that are coming back. This is now the second time we've seen this - a drug that initially worked well slowly becomes ineffective as the cancer develops an immunity. While some might wonder what would have happened if we hadn't taken the month off, you can't ask that question - water under the bridge. At the time we didn't argue with the decision, though I do recall asking the question. All we can do is trust the doctor's recommendations and we will continue to do that.

So since the Irinotecan is no longer effective, we were concerned the doc might be running short of drugs to try - but not to worry! She always seems to have something to give us - in this case she wanted a drug that worked substantially differently from what was just abandoned, and chose Navelbine - a drug normally used for non-small cell cancer. We've already given the drug a pet name - "navy-bean". It works by inhibiting cell division, which is what causes cancer cells to grow unchecked. We're currently awaiting her insurance to approve treatment (Melinda has changed insurance 4 times since September, and she just today started Medicare - now THAT is an epic story!). We expect that to get approved and she'll receive chemo on Thursday, and go in for the normal weekly infusions for 3 weeks, then a week off for her normal cycle. Two more cycles and another PET scan - so we'll know if it is working come the first week of April.

The other complication is that the most recent PET scan showed a speck in her brain, while the brain MRI taken 4 weeks ago to look for such things didn't show it... So they are repeating the brain scan also on Thursday. If confirmed, they'll likely do radiation to zap it, but will learn those plans once we get to that point... Stay tuned - the battle continues!

A Break From Cancer!

Melinda had her latest PET Scan on Monday. It is the gold standard for monitoring the progress of her treatments and how the tumors are responding to the chemo. "Her last one 2 months (2 cycles) ago in early September was scary good - showing a big improvement with the current chemo regimen (Irinotecan).  This after over a year of cycle after cycle of various chemo drugs with her tumors getting larger, more numerous, and more active. It was so good that I was suspicious that the techs had done something wrong, and that was the reason for the September scan showing so much improvement.

So it was with some nervousness that we went into today's oncology appointment to go over the results before this next cycle started. But the news was great! Continued huge improvement - only three tumors still visible, all smaller and less activity! Dr. Garland was hoping to keep things stable (no one talks about "curing" small-cell lung cancer), and she is as shocked as us that the drug is working as well as it is. We heard later from her nurse that Dr. Garland used her previous scan result in a meeting showing the resultant improvements.

Anyway, Dr Garland offered her a chemo break - taking a full cycle (month) off from treatments to let her body recover, and continue the attack on 3 December. We decided to take it - we're hoping to travel over Thanksgiving, so that would put her at full strength other than suffering the effects of her just-finished treatments. It is nice to know that the improvement is real and the side effects she has suffered through is leading to some real progress in beating this. And it will be nice to have a month to skip blood tests, chemo, and the cancer center in general! We're looking forward to 4 weeks of "normal" life!

Shout It From The Mountains!

We were dreading the routine.  Here we are on 10 September, 25 months into Melinda's cancer fight, sitting in the oncologist office waiting for the results of yesterday's PET scan that monitors the effectiveness of her treatments.  These scans, taken every 2 cycles of treatments (each cycle is a month) are the gold standard for monitoring the growth and spread of her small-cell lung cancer tumors.  Unfortunately, for over the last year now, each scan has been progressively worse, or new spots have popped up in new places, marking a wider spread each time.  Our oncologist, Dr Garland, who we love, always seems to have a new chemo combo to offer as we abandon each treatment that isn't helping her.  But after a year, you would think that the list of options are getting shorter and shorter...

So here we were on another Thursday waiting to get the update.  I asked Melinda, "What is your "spidey-sense" telling you about the results"?  She felt that the results would be good, which I thought was going out on a limb after so many cycles of bad news...  Minutes later, nurse Nancy (yes, really!) came in and said Dr. Garland was in her office doing cartwheels - the PET scan was miraculously good!  Unfortunately, we saw our oncologist's PA (who we also like a lot), and she provided us a copy of the PET report.  There were lots of $5 words, but notably states "Marked interval decrease in size and metabolic activity of the previously identified lymph nodes.  Previously identified left retrocrural, aortocamal conglomerate and periceliac lymph nodes are not seen on today's exam."  One set of lymph nodes that had grown into a single mass in the last scan was now reduced and resolved into 3 smaller spots.  So while we didn't do cartwheels, the ear-to-ear grins we carried expressed our relief!  Good news at last!

So we'll continue with the Irinotecan for a while, and in two more cycles (2 months) hopefully we'll see continued improvement.  She had today's infusion immediately after seeing the PA.  Our buddy Erica sat with Melinda during her treatment as I had to be home for meeting pest control, then we went out for steaks to celebrate, and Melinda finished off her Ribeye without leftovers!  It is amazing how a little good news will brighten your day, week, or for that matter, the entire month of September!  Spread the word!

Blog On Hiatus...

Just a note that the blog is off the air for now.  We made it back safely to Tucson early this morning, but while in the Midwest, my computer with image archives and Photoshop for editing "blew up".  It wasn't very spectacular, but the display (which one tends to need for working) suddenly got bright and went away.  So it is at the shop and in the intervening week or so I'm not going to worry about it.

Melinda had a dentist appt today, and her first treatment of cycle 2 is on Thursday.  This new chemo drug is really knocking her down with nausea and fatigue, so she is resting up for this next cycle, after which is her next PET scan to see if it is doing her any good.  But for now, life goes on as normal here - check back in a couple weeks as we resume operations...

Latest Cancer News!

Melinda had her latest PET scan Monday, and today we met with her oncologist to discuss results and plans. The report sound like a broken record, because the news is the same as the last few scans - the chemo drugs were ineffective - most active spots visible are either a little larger or brighter in intensity. The great news is that her brain scan was totally clear, so the fear of spreading to her brain was put to rest.

The plan is to put her back on the drug study we talked about 2 months ago. If you want details, you should go read that post and hit the links there. She was originally barred from the study because of the blood thinners she's been on for 2 decades. But they very recently removed that restriction, so she's back on the list. The TH-302 has a crap load of potential side effects so lots to look for and precautions to take.  The oncologist also warned us that while the drug sounds like a modern miracle (delivers cytoxins locally into the tumors), not to expect a cure, but to look for lack of growth - stability in tumor size.  Lack of growth is good!

This all starts in a week or 10 days. We see her oncologist again next week to cover more details. The good news too is that starting the study puts us on a rigid treatment schedule (3 weekly infusions with a week off), so we can plan on a Midwest trip on her break. It is the first time we've had some stability in the treatment in a while! Stay tuned!

Change in Change of Plans...

Remember that nice post from nearly 3 weeks ago explaining the drug study that Melinda was going on?  Well, never mind - plans have changed again...  Everyone overseeing the study gave a thumbs-up, the insurance was working with the study to make sure all expenses would be covered, and we thought all our ducks were lining up when we suddenly heard that she couldn't be on Coumadin for the study.  Evidently they had granted exemptions in the past for patients on blood thinners, but for some reason, were reluctant in this case.  So with 5 weeks since her last treatment, which wasn't effective anyway, we were anxious to do something, so are going to another drug combo as an alternative to the TH-302 study.  Evidently, the study will be a fallback if the new treatment proves less than optimal after a few cycles...

So, on Thursday, Melinda will start yet another combo, this time Adriamycin and Cytoxan.  Our oncologist thinks that side effects won't be worse than some of her previous treatment regimens, though one of the side effects of Adriamycin is cardiomyopathy - it can be toxic to heart muscle cells.  So she will get an echocardiogram before starting, and regular monitoring to make sure this isn't an issue in the future.  Other side effects are the standard - possible hair loss, nausea, tiredness, aches and pains, etc, etc, etc - the standard list that she has fought through every time before...

So that is the plan.  A single afternoon in the infusion center every 3 weeks, with blood tests before and a week after to watch her recovery.  In 2 cycles or 6 weeks, she'll have another PET scan to see what effect it has been having.  Fingers crossed, looking for better news!

Change in Plans...

Time to bring you up to date on Melinda's cancer treatments... We saw the oncologist today, and went over the PET scan she had done earlier in the week. This is the gold standard in monitoring her small-cell lung cancer and tracking the progress of her chemo treatments. The news is that since her last PET scan, the spots she had have gotten slightly larger, and there are now more of them. Her previous scan told us her last chemo combo had stopped working, and now this one indicates that the treatments she has gotten the last couple months haven't been effective either. So another change in plans is called for...

Our oncologist recommends joining a study on TH-302, a hypoxia-activated prodrug. This drug is inert when administered, and converted to an active form through a normal metabolic process, in this case, where oxygen levels are low. The theory is that cancer tumors rapidly outgrow their blood and oxygen supply, and these areas would locally activate the drug into cytotoxins which would kill the cancer cells.  Sounds great on paper!  There are currently 6 patients in the study under our oncologist's care, at least 4 for more than 6 months, one for nearly a year, so it is effective in most of these cases.  PET scans are done every 2 cycles (months), so if the process doesn't work or loses effectiveness, they are pulled from the study.

Even though the drug is considered "inert" when administered, there is a page-long list of potential side effects besides those normally seen in chemo warnings.  The worst we see listed is a skin toxicity, both from the inside and if it leaks on the outside of your skin.  There are also clotting and kidney issues, but Melinda is already on blood thinners and they are quite careful in their blood monitoring. 

We need 3 weeks from her previous chemo to start, so have 2 weeks to wait - about what it will take to get the insurance company up to speed on all this.  Generally the study pays for expenses not covered by insurance.  And if this course of action is ineffective, our oncologist already has a fallback set of drugs to try next.  We'll let you know of progress or changes...

The Sick House!

I apologize for not posting recently, but for the last week or so our place has seemed like a quarantined house! After 5 days in the hospital, I suffered a relapse of my pneumonia, though a revisit to the ER couldn't get me past the nurse practitioner to see a real doctor. I suspect it looks bad on their records to re-admit me for something they discharged me for a week earlier... I had a huge hematoma (clot) somewhere alongside my lung that made it impossibly painful to cough or even breathe deeply, and blood tests showed my pneumonia hadn't fully gone away. So I got another round of a different antibiotic with some great pain pills and a medicated inhaler to help open up and keep my lungs clear. I'm also supposed to keep using "Melinda" my incentive spirometer (see above post) on an hourly basis. It has been another 6 days and I'm finally starting to feel better, and have gone in to work now a couple hours at a time. I still tire easily and heaven forbid I need to cough or sneeze, which still registers nearly a "10" on a scale of 10...

Melinda has been extremely tired and nauseous, with other symptoms not usually discussed in mixed company. After her old chemo, which she had been getting since her diagnosis in August 2013 stopped working, her oncologist started her on a new one for her, Topotecan, which she is supposed to get weekly for 3 weeks, then a week off.  Today was supposed to be her 3rd Wednesday of treatments, but her platelet count was too low, so only got some anti-nausea drugs and a liter of fluid, her next treatment put off at least a week if her platelets allow. Interestingly, she said she woke up this morning feeling the best she has in weeks. Hopefully with the week off she'll feel even better in coming days.

Fortunately, with all our physical limitations lately, our friends have stepped up to care for us!  Karen from the Mirror Lab has cooked several meals for us, Erica, former Mirror Lab and now a nurse at UMC (!) visited me in the hospital, then stopped and took care of Melinda on her way home... Our friend Donna came down from Phoenix to help care for us weekend before last, then Melinda's niece Kathy came down for a visit from the Midwest for a week before just leaving a few days ago. Fortunately, we didn't have to feel guilty for not entertaining her, but her exploration of Arizona will have to wait for her next visit.

A Fork In The Road To Recovery...

Update-  Melinda's platelet count was too low for chemo today, so is pushed back to Thursday, Friday and Saturday.  Hopefully counts will be up enough to get it in then...

I get in trouble when I go too long without posting about Melinda's cancer treatments.  Her Facebook friends know all the details of her diagnosis and treatments before we leave the cancer center!  Those of you who depend on news from me sometimes have to remind me to let you know how she is doing. 

Fifteen months (!) into her treatments for small-cell lung cancer and she is doing ok.  That's about the news in a nutshell.  She has endured 7 cycles of chemo last Fall and Winter, radiation therapy that put her in the hospital twice last Spring, and when more spots showed up in her PET scans this Summer, is in the middle of  yet more chemo now.  She lost her hair in the first chemo, again in the radiation, and is at least thankful for a little now as we again cycle into cooler weather (see right!).  The PET scan last week showed the better news has slowed.  Of the 3 spots in lymph nodes in her abdomen, only 1 showed improvement even in the midst of chemo treatments, so the oncologist has called for a shakeup in strategy.  Because these remaining spots are near her intestines, they don't feel radiation is a good option.  We were told early on that the cancer might develop an "immunity" to the same chemo over the long run, and that appears to be happening with the Cisplatin.  So she is switching to another of the ones she got early on - Etoposide.  She is suspecting that she'll lose her hair again from this one, but remains committed to as aggressive a treatment as the oncologist is willing to go...  She seems a lot less bothered by the nausea than I am, and that would likely be easier to tolerate if it wasn't for the fall she took when she passed out the day after Labor Day.  Her back has been bothering her since and the pain of that injury is likely bothering her the most. 

But she soldiers on, enjoying her thick, curly dark hair even as it is likely to leave us like the autumn leaves...  But it will grow back someday.  So that's the story - you are now up to date as she starts the Etoposide tomorrow if her platelet count is high enough.  Any questions now?

Seems We've Been Here Before...

We returned to Tucson last weekend for a battery of tests and oncology appointments for Melinda and we have news. The results are mixed - the spot on her pancreas from a couple months ago that got zapped by radiation is gone and she is perfectly clear above her rib cage, but she's got new small sites in her abdomen that are associated with her retroperitoneal lymph nodes. So the battle continues at a new site - we knew that the small cell lung cancer can and will pop up in various locations. Rather than treat the multiple spots with radiation, we're going back to chemo, tentatively planned for four 3-week cycles. So we know what we're doing for the next 3 months!

 Interestingly, today was the 1 year anniversary of the x-rays that first revealed her cancer, and also today she got the first dose of carboplatin back at the UA Cancer Center. While it was nice to see our favorite oncology nurse for the first time in 6 months, we'd rather be celebrating a clean PET scan and contemplating some time away from treatments...

The Pothole On The Road To Recovery...

We haven't been blogging much lately - sorry about that...  We've been tired, working hard, and there have been some developments on the road to Melinda's cancer recovery.  Her PET scan a couple weeks ago - the gold standard in monitoring and tracking her cancer, showed a "hot spot" in her pancreas.  It is not pancreatic cancer, but rather a secondary site from her small-cell lung cancer.  Her oncologist seems not to be overly concerned, but quickly referred her to the radiation oncologist who prescribed her to 5 sessions of radiation over the course of a week to zap it.  She is 3 days in and will finish Wednesday.  Her pancreas is close to her stomach and small intestines, and one of the side effects is heartburn and discomfort from those organs, but knock-on-wood, none of those symptoms have been seen.

Since our return from the Midwest a month ago her main issue has been extreme tiredness.  While she felt well visiting family and friends there, we both had cold-like symptoms on our return. Whether that was an issue or just residual effects of her lung and brain radiation through the Spring remains to be seen. The doctors have her on her second round of steroids to reduce the effects of her radiation and trying to up her energy level. In the meantime, we're ready to be past the treatment phase and get into the recovery! Fingers crossed that this little lesion was a rogue tumor that somehow survived the chemo and is the last to be zapped by the current round of radiation... We could use a break that lasts longer than a month!

A Quadruple Celebration!

Now at "Ketelsen East", we've been spending time with family and friends - making up for the extra-long absence since we've been here for a visit.  Last night we had Melinda's sister and her husband, her niece and nephew and his family over for dinner.  As usual, we offered a pork loin cooked over the grill, and added cheesy potatoes, macaroni salad and steamed veggies.   Also as usual, it was great!

For a little post-dinner entertainment and in celebration of Melinda's cancer remission, we sent a few "Chinese lanterns" aloft - effectively little hot air balloons.  Totally biodegradable and made of thin tissue, a little wax-coated piece of cardboard adds enough heat when lit to fill the interior and it floats into the air to a respectable height, and considerable distance downrange.  I was exposed to these at last year's RAGBRAI, and after searching out stores in the Midwest (turns out they are illegal in Illinois, and we bought out the entire stock of a store over the river in Iowa) we  ended up with a dozen.  It is amazing how such a simple device can delight kids and adults alike.  We sent 5 aloft, one ending up getting caught in a nearby tree...  We had brought a couple to Tucson, but it has been so dry that we're afraid of setting the city afire.  Melinda's nephew is a fireman, so we felt safe in setting these off...  I believe the theory of these lanterns is that at altitude, by the time the little flame goes out and the interior cools enough to drop that by the time it comes down it will be cool and no longer a fire danger...

After returning to the house, it was time to celebrate birthdays!  Brother-in-law Jeff, Rick's wife Susan and daughter Lilly all had birthdays in the last few days, so Melinda had made a cake and filled it with candles.  All 3 contributed to blow out candles, and we all enjoyed cake (Melinda's mom's recipe!) and ice cream!

Melinda's niece Kathy has been out to the house
a number of times this week, bringing her dog Jethro along for the ride.  He is a good dog, though he insists on tongue-bathing Melinda's face when given half a chance (see pic at left).  He's not allowed to do it to Kathy, so enjoys working on Melinda...

As most visiting dogs are when the arrive, he's quite excited and explores the entire house before he quickly settles down (after washing a few faces).  He is about the only dog I've seen that makes himself a bed out of the pillows on the couch though while the adults talk around him!

We've got a busy agenda the next few days, so the action won't stop till we return to Arizona.  Hopefully a few more posts from Illinois before then!

End of an Era!

Today was Melinda's last treatment!  She made it through the two weeks of daily whole-brain radiation with flying colors.  No serious symptoms to speak of, minor headaches, and some dizziness - enough that they gave her a liter of fluids after yesterday's treatment.  They offered a steroid to lessen some of the effects of brain inflammation, which she started last night, and she thinks it is a little better today.  As a prize for making it through the latest round, they presented her with her "head cage" and a carnation...  The cage is what holds her head absolutely still during the 5 minute treatment, and was form fitted to her when she first started.  She demonstrated its use at right against the wall.  The mesh helps with claustrophobia since you can see and breath through it, but still, being bolted down to the table has got to feel strange...  Evidently the radiation stimulated her olfactory nerves, and told the techs that she could smell ozone or an electrical smell.  They told her that it was normal and some also see blue light from the optic nerve being similarly stimulated (which she didn't see).

At left, our cat Annie comes to investigate the cage.  Since I'm such a fan of moiré fringes, the shot shows the start of fringes formed by the mesh holes lining up, or blocking each other... 

So our adventure from the last 7 months is ending! No more treatments on the horizon!  She's got more doctor appointments weeks and months away, along with PET scan and MRI monitoring on a quarterly basis or so.  But otherwise she is declared cancer free!  It is interesting to be suddenly over the treatments after weeks of waiting for the end to come.  We've sort of forgotten what "normal" is like, but hope to find out in the weeks to come.  For those of you who have showered your prayers and good wishes upon us, thank you so much for your support!  For those of you in Tucson that would like to tip a celebratory beer with us, we'll be at Barrio Brewery about 5:30 tomorrow (Saturday)!  Happy Times!

The "R" Word!

We've travelled a hard path for the last 7 months.  Melinda's initial diagnosis of small-cell lung cancer was a shock, but we jumped into the battle without hesitation.  We've done everything Dr. Garland has wanted us to do, and she has an aggressive outlook on treatments.  We know there is no cure for small-cell, but today we finally heard the word, brought on by yesterday's PET scan, the definitive measure of her cancer.  When Sandy, Dr. Garland's nurse first called this morning, Melinda thought there must be bad news, until she said the radiologist report said "continued complete metabolic response to treatment", in other words, there was no detectable cancer activity!  When Melinda first dared ask if her cancer was in remission, Sandy confirmed that was the case!  HAPPY DAY!  She still has a week of the full-brain radiation to zap the microscopic cells that may or may not be in her brain, but when we see Dr. Garland on Monday, we're expecting confirmation of Sandy's news leak, more details and likely get to see some images too.  At that time she'll go over the schedule for continued long-term monitoring for a possible return.  While we've hoped for good news, it looks that it has finally arrived, and it is time to celebrate. 

Addendum: For those interested in the tech speak, from the radiology report:

IMPRESSION:
Complete response to therapy. The primary right pulmonary hilar mass and paratracheal lymphadenopathy are no longer identified. No new FDG avid disease is identified.

Today's Box at the Door!

The ingenuity of our friends knows no bounds!  Melinda has continued to get cards and notes to keep her spirits up as her radiation treatments resume again today for the home stretch.  This weekend we got an "Edible Arrangement" of fruits, she has a prayer shawl waiting for her to swing by work and today, another box waiting for us at the door as we returned from the hospital.  Most, or at least some of you likely know the radiation warning symbol at right.  Well what way to poke fun at the process than little cookies of radiation symbols!?  They were sent by Gretchen, who lived up the street when the Johnsons were still living in the 'burbs of St Louis.  As Homer Simpson would say, "Hmmmmm, radiation cookies!"