Cancer

My 10 year cancerversary

/ edebock / 14 Comments

Do you remember where you were and what you were doing exactly ten years ago today? I do. The day is etched in my memory in vivid detail. That was the day I was told that I had cancer in my colon and that it had already spread to my liver! There was no hope or expectation then that I’d be writing about that day ten years later!

It wasn’t until a couple of weeks later that we learned that what I actually had (and still have) is neuroendocrine cancer (NETS) which, though incurable, usually progresses slowly. That gave us a glimmer of hope, but on one of our earliest clinic visits, we read that the average life expectancy for a neuroendocrine cancer patient was five years following diagnosis. I now know that that information was probably already outdated. There are members of my online patient groups who have been living with this disease for 10, 15, even 20 years or more. Others, however, have not fared as well, so I’ve learned to consider every day a gift.

On a day like today, I could dwell on the fact that over the past ten years I’ve had two major surgeries, been exposed to an enormous amount of radiation, had dozens of tests and scans of various kinds, lived in 28 day increments between injections, had 128 of those “butt darts”, and on and on. Or, I could count my blessings; focusing instead on the things that I’ve been able to do and enjoy over the past ten years.

Since my initial diagnosis, we’ve seen our family grow by one daughter-in-law and four grandchildren! In spite of the worldwide pandemic that put a damper on travel for a time, we’ve holidayed in Nova Scotia, BC, and the Yukon, and traveled to Israel, Europe (Portugal, Italy, France, Belgium, and the Netherlands), and Mexico four times. We purchased a kayak and have spent many hours paddling quiet lakes and rivers. Over the past ten years, we’ve spent 240 nights in our trailer and I’ve played over 350 rounds of golf. We’ve tried new things like snowshoeing and joined a seniors’ bowling league. I’ve edited 1346 microloan descriptions for Kiva and joined a prison letter writing ministry. I’ve had the opportunity to teach two women to read and tutored an ESL student. And again, the list goes on!

Life is good! Yes, I have cancer. Yes, some of my tumours have grown a bit recently, but I still feel 100%. I don’t know what the future holds, but neither does anyone else. I have an army of people who pray for me and we know who holds my future. I’ll just focus on today!

So what am I doing to celebrate this momentous occasion? I suppose I could have planned something special, something big, but I’ve been so busy just living life that this one crept up on me! I have absolutely nothing planned, but that’s okay. I’m alive and living life to the fullest and that’s all that really matters!

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Progression

/ edebock / 6 Comments

As a neuroendocrine cancer (NETS) patient for the past ten years, stable became one of my favourite words. After each set of tests and scans, stable was the word that my doctors used to tell me that my cancer had not grown or spread. Unfortunately, when I saw my specialist on Friday, that was not what I heard. Instead, I heard the word progression.

In the cancer world, progression is the word that is used to describe growth or spread of the disease. It didn’t come as a shock to me. Over the past few months, we’ve been carefully watching test results that appeared to indicate that my tumours were likely becoming more active again. The news we heard on Friday was actually better than I feared. There has been a tiny bit of growth to a couple of tumours on my liver, but no spread anywhere else. That part is very good news!

Thankfully, I’m a cup half-full kind of person. I think I’d be a basket case by now if I wasn’t!

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So, what’s the good news in this? What happens next and what’s there to be optimistic or hopeful about?

After 126 monthly injections of a drug called Sandostatin, it would appear that it’s no longer doing its job and I’ll be switching to a different medication. Since Lanreotide is also given as an injection every 28 days there will be little change to the routine that we’ve become accustomed to over the years. There are, however, some real benefits to this medication.

Unlike Sandostatin which is know to suppress the production of the hormones that these tumours produce and thus reduce symptoms, Lanreotide is also known to actually delay their growth. Secondly, Novartis, the company that produces Sandostatin, cut out their in-home injection program over a year ago and I had to arrange for my family doctor to begin giving me my injections. Lanreotide is produced by Ipsen and I’ve been assured that once again, a nurse will begin visiting my home to administer my butt jabs. Not only is that more convenient for me, but it frees up my doctor’s time for other patients which is an important issue in a rural area where there’s a doctor shortage. Perhaps the most exciting part of all this for me, if there can be excitement in receiving news of progression, is the fact that hubby and/or I can be taught to administer the Lanreotide injections ourselves! Why is that exciting, you ask? Why would I want to poke myself if a visiting nurse could do it for me? For someone who loves to travel, as I do, the idea that I might be able to pack my medication and leave the country for more than 28 days at a time is actually quite exhilarating!

I’m already somewhat familiar with the new drug because many people in my online patient groups are on it and seem to tolerate it well. Hopefully I will too. I’ll have tests and scans again in late October to see if it’s having the desired effect. In the meantime, it’s summer in Alberta. There’s camping, hiking, and kayaking to be done and golf to play. In spite of the change from stable to progression, I still feel 100% and I’m determined to keep on living life to the fullest.

Living my cancer life out loud

/ edebock / 6 Comments

This post was inspired by an interesting discussion that took place awhile ago on one of the online neuroendocrine cancer patient groups that I’m a member of. It started with a younger patient asking for advice about when to tell the person she was going on a first date with about her cancer. I was surprised to learn that most of the patients who responded to her question had told very few people outside their immediate families about their diagnosis. I’m quite the opposite. Though I’m naturally an introvert, I’ve been living my cancer journey out loud since the very first day I heard that fateful C word!

In the summer of 2013, when my doctor called and told me that I had cancer, I’m sure that I was in shock. One of the first things I did was sit down and make a list of who I needed to call and then I started. I called our pastor, several close friends, and of course, our family. Just three days later, I wrote the blog post that shared my diagnosis with the rest of the world. At that time, we didn’t even know what kind of cancer I had. I shared that news a couple of weeks later in this post.

Why? Why did I choose to share my diagnosis so openly?

Learning that you have cancer is overwhelming and I knew that this wasn’t something I could handle on my own. As a Christian, my first instinct was to call the people I knew would pray for me. Without realizing it, I was beginning to build an invaluable support system that would make the journey so much easier.

There were two reasons for sharing my diagnosis on the blog. Writing helps me process things and boy did I need to process! Since I’d already been blogging for several years, that seemed like the logical place to start writing about what I was going through. Secondly, posting updates on the blog was an easy way to communicate what was happening with our large extended family and with friends who are literally spread around the world. It meant that I didn’t have to repeat myself over and over again which would have been mentally and emotionally exhausting.

As time went by, however, sharing my journey openly and online also became a way to educate people about neuroendocrine cancer. Ten years ago, NETS was considered a rare cancer, but the number of people diagnosed with this type of tumour has been increasing over the years and it’s no longer fair to say that it’s rare. Sadly, however, it’s still not well-known, so education and advocacy are extremely important. Like any other cancer, early detection means more likelihood of successful treatment and long-term survival. Family doctors need to know that when a patient presents with symptoms such as abdominal pain, diarrhea, shortness of breath, wheezing, heart palpitations, high blood pressure, and/or flushing, neuroendocrine cancer is a possibility. Patients need to know that when their symptoms persist after a more common diagnosis is made, they need to persevere until they get a correct one. It could be NETS. Patients with neuroendocrine cancer, particularly the newly diagnosed, need to know that there is hope. More research is needed to find better treatments and ultimately a cure. Until these things happens, I’ll continue living my cancer life out loud!

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Role reversal

/ edebock / 10 Comments

It’s been quite awhile since my last health update on here, so for those of you who follow our cancer journeys, I thought it was about time for another one. I say journeys because you may remember that, in addition to my cancers, hubby was diagnosed with prostate cancer last summer. Fast forward eight and a half months and as of this week, he no longer has a prostate and as far as we know, he no longer has cancer!

Surgical removal of the prostate, in spite of the fact that it has some negative effects, is thought to be the best choice for long-term survival, but when we saw the urologist in August, he warned us that many specialists consider 70 to be the upper age for performing that surgery. At 73, Richard is otherwise in excellent health and physical condition, so he was referred to a specialist who does robotic prostate surgery, the most advanced treatment option available, with the hope that he would agree to do the procedure. Had he not, there were several other options that we would have had to consider.

On October 31, after the appointment was delayed by a few weeks due to us both having Covid, we finally met with the surgeon. He had clearly reviewed Richard’s case and had absolutely no qualms about performing the surgery on someone in his physical condition. As Dr D said, we could easily look around his waiting room and see men a decade younger than Richard who weren’t in the shape he was in and who would be much higher risk. We were told at that appointment that the wait time for surgery would be five to six months.

Almost five months later, we arrived at the hospital in Edmonton at 5:30 a.m. on Monday and by noon Richard was in the recovery room with no prostate and hopefully no cancer. After one night in hospital, he was released the following day and I suddenly went from patient to caregiver! Total role reversal!

Over the nine and a half years since my first cancer diagnosis, Richard has stood by me and provided excellent care when I’ve needed it. He’s accompanied me to countless specialist appointments and seen me through numerous scans, two major surgeries, 30 radiation treatments, and 14 PRRT treatments. Now it was my turn and I wondered how I would do! Thankfully, he’s been a model patient and things have been going well so far.

The biggest challenge facing us when we got home was the fact that he has a catheter which won’t come out until April 6. The first evening, as we figured out how to change from day bag to night bag (including cleaning the day bag and tubing for the next day’s use), we were both all thumbs. Once we figured everything out though, he’s been able to manage it with minimal assistance from me. A bigger challenge for me might come when our snow finally melts and I’m suddenly in charge of the early spring yard work that Richard usually takes care of! He has very clear instructions not to do any heavy lifting, snow shovelling, or lawn mowing for six weeks. At that point, we’ll also see the surgeon for a follow-up appointment. It’s then that we’ll receive the pathology report and know for sure that he’s cancer free.

And what about my cancer journey? Since early December, I’ve had a CT scan and three different PET scans. Two of those were part of a study. All four scans agreed… no change; no growth or spread. As far as we can tell, my neuroendocrine cancer (NETS) continues to be stable. We’re somewhat puzzled by the fact that a couple of markers in my blood and urine that are specific to NETS have been climbing, but since I’m having absolutely no symptoms, we’ll simply continue to monitor those with more frequent testing. Last week I had my annual check up with the wonderful surgeon who removed both of my other cancers and the good news is that there is no sign of recurrence of either one of those. This is as close as I’ll ever get to a clean bill of health, so I’m in good shape for my present role of caregiver instead of patient!

Stronger Together text with arrow. Corona virus - staying at home print.

One word for 2023

/ edebock / 15 Comments

For each of the past six years I’ve chosen one word to inspire or guide me in the new year as well as a scripture verse to go along with it. My past words have been Still, Grace, Inspire, Bold, Truth, and Freedom.

Little did I know when I chose Freedom as my word for 2022 what a contentious topic it would soon become here in Canada. At the beginning of January, I couldn’t possibly have imagined that less than two months later hordes of protesting truckers would close Canada/US border crossings and take control of the streets surrounding our capital buildings in Ottawa, all in the name of freedom. As I wrote at this time last year, there are really two kinds of freedom, freedom to and freedom from. The so-called Freedom Convoy was fighting for freedom from Covid-19 vaccination mandates. There is no doubt that the pandemic did, at least temporarily, curtail our freedom to travel, to gather in large groups, to celebrate special moments with those we love, and to enjoy many of the activities that we once took for granted, but in my opinion, the protesters were forgetting that with freedom comes responsibility. When I chose Freedom as my one word for 2022, it wasn’t Covid that I had in mind. I was thinking on a very personal level of freedom from trauma induced bitterness that had taken hold in my life.

When it came to choosing a new word for 2023, I considered several possibilities. When I first started thinking about this in late November, I was suffering from scanxiety. As I worried about whether or not my neuroendocrine cancer was spreading throughout my body and thought ahead to hubby’s upcoming prostate cancer surgery, I thought that perhaps Courage was the word I wanted. Once I learned the results of my most recent CT scans, however, that didn’t feel like the right word anymore. For several years I’ve considered choosing Intentional as my one word, but as I thought about that one I realized that I already live quite intentionally. I wanted a word that would give me something more to aspire to in the coming year. But what would that word be?

I thought about how good I feel at the end of a productive day, a day that has gone really well, and tried to come up with a word to describe that feeling. Surely that would be a good word for the coming year. Accomplish came to mind and I almost settled on it, but then I decided that it was too work or task oriented. I do feel great at the end of the day if I’ve accomplished a lot, but I also feel that way when we’ve spent the day hiking or paddling the kayak.

After pondering some more, I finally settled on the right word.

Contentment

According to the Collins English Dictionary, contentment is “a feeling of quiet happiness and satisfaction”. Perfect!

Once I’d finally settled on my word, choosing a scripture verse to go with it was easy. I knew right away that it would be Philippians 4:12b.

“I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.”

Whether my health continues to be stable or begins to deteriorate, whether the Covid pandemic is truly over or not, whatever my circumstances are in the coming year, I want to be able to say with the apostle Paul that I have learned to be content in any and every situation. As I plan my days, I’ll consider what I need to do to end each day with that feeling of quiet happiness and satisfaction and hopefully act accordingly.

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Have you ever chosen a word to inspire or guide you in a new year? What would your one word for 2023 be?

Mostly good news

/ edebock / 9 Comments

For the past couple of weeks, I’ve been riding a roller coaster that is known in the cancer world as scanxiety (scan + anxiety = scanxiety). 

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Over the 9+ years since my stage 4 neuroendocrine cancer (NETS) was diagnosed, I’ve had more scans of various kinds than I want to count. The morning after each of my 12 radioactive PRRT treatments I had an octreotide scan to determine whether or not my tumours had grown or spread since the previous treatment. Any scanxiety that I experienced back then was short-lived because I met with the doctor immediately after the scan to review the results. Not so with the CT scans that I’ve had at 6 month, and more recently 9 month, intervals since completing my treatments in June of 2019. After each of those, I’ve had to wait about a week to find out the results. A week can feel like a very long time if you’re riding the scanxiety roller coaster, but because I’ve been doing so well for so long, that hasn’t usually been a big problem for me. 

This time was different. About three weeks prior to each scan, I have a whole battery of lab tests. The results of those are available to me online, so before I even had the CT scan, I knew that something might be amiss. Two markers that are of particular significance for NETS patients are chromogranin A in the blood and 5-HIAA (5-hydroxyindoleacetic acid) in the urine. Both had been gradually climbing and were now flagged as being higher than the normal range. That’s when the roller coaster ride began! 

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In my lowest moments, I was sure that cancer was rapidly spreading throughout my body, but I did what I’ve done before in times like this. I called on a dozen godly women who share my belief in the power of prayer and asked them to pray. The ride was smoother after that. I still knew that something might be wrong, but I felt more at peace. I’d be a liar if I said that I wasn’t anxious at all, but I didn’t dwell in the low spots any longer. I also focused on one of my favourite passages from scripture, Philippians 4:6-7. 

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

By the time the doctor phoned today for our follow-up appointment (saving us a 5 hour round trip to the city) I truly did feel at peace about whatever it was that she was about to tell me. She gave me the good news first. Nothing of concern appeared on the scans. In fact, a tumour in a lymph node that had been there since diagnosis in 2013 has completely disappeared! That’s amazing news, especially considering how long it’s been since I had my last treatment. I don’t think anyone expected that the PRRT would still be resulting in shrinkage of tumours three and a half years later. The good news was somewhat overshadowed though by the fact that those elevated levels in my blood and urine still indicated that something is happening. So what happens next? 

I’m going to be going for a Gallium-68 dotatate PET scan sometime in January. This newer imaging technique is similar to the octreotide scans that I’ve had in the past, but much more sensitive. It will be able to pick up even the tiniest growths that might have been overlooked on the conventional CT scan. The results of that will dictate what the next steps will be, but for now I’m not going to worry about it. I’m determined not to climb back on that roller coaster. Instead, I’m going to focus on having an enjoyable Christmas!

The scan did reveal something totally unrelated to my cancer. Apparently, I now have a 1.3 cm Thornwaldt cyst lurking in my head! This is a rare, benign growth that develops in the nasopharynx, above the soft palate and behind the nose. If it continues to grow or becomes infected, it has the potential to start causing things like headaches, postnasal drip, blockage of the eustachian tubes, and/or halitosis. If that occurs, it can be drained or removed surgically. I’ll cross that bridge if and when I get there. For now, it’s just one more thing to add to my long list of weird and not so weird diagnoses! 

NET Cancer Day 2022

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ncd-logo-newOnce again, today is Worldwide NET Cancer Day, a day set aside to increase awareness of neuroendocrine (NET) cancers and to promote improved diagnostics, treatments, information, care and research. As a patient who has been living with this cancer for the past nine years, this is, of course, very close to my heart.

Once again this year, we are urging people to

Know the symptoms.

Push for diagnosis. 

Less than 30% of neuroendocrine cancer patients receive a correct diagnosis the first time they reach out for help. In fact, it often takes five to ten years from onset of symptoms to correct diagnosis. During that time, of course, the cancer quietly spreads.

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Here are some facts about neuroendocrine cancer:

  • NETs are a unique group of cancers that arise from neuroendocrine cells and can be found in many organs of the body.
  • NETs generally affect people over the age of 50, but not always.
  • Symptoms of NETs vary and are often non-specific due to their ability to secrete an excess of different hormones.
  • Symptoms depend on the organ where the tumour is located and may include abdominal pain, diarrhea, nausea and vomiting, weight loss, skin flushing, chest pain, coughing, wheezing, shortness of breath, and/or back pain. 
  • As a distinct class of tumours, NETs require specialized tests and treatments.
  • NETs are often found unexpectedly during unrelated medical procedures or imaging tests.
  • NETs are the second most common cancer of the digestive tract.
  • Gastrointestinal NETs are often found in the appendix, colon, and rectum, but can also affect the stomach and small intestine.
  • Lung NETs comprise 20 to 25% of all invasive lung tumours.
  • The incidence and prevalence of pancreatic NETs (the form of neuroendocrine cancer that claimed the lives of Steve Jobs and Aretha Franklin) have been steadily increasing over time and now comprise about 7% of all pancreatic cancers.
  • Merkel Cell Carcinoma, a rare skin cancer, is a form of neuroendocrine cancer.

One of the most important things I’ve learned since my diagnosis is how important it is to advocate for yourself. Know your body. Know what’s normal for you. Pay attention when something feels off. Take note of unusual symptoms and talk to your doctor as soon as possible. If you don’t get the answers you’re looking for, PUSH! Don’t give up.

Thankfully, at this point, my cancer is stable. Constant surveillance is important though, so I’ll be having CT scans and other tests again next month. In the meantime, since hubby’s diagnosis with prostate cancer this summer, my health has temporarily taken a back seat. Now that his name is on the five to six month waiting list for robotic prostate surgery, we’re breathing a sigh of relief and getting on with life. Though there is no cure for me, I continue to trust that I’m not dying of NETs, I’m living with it! 

70!

/ edebock / 29 Comments

Today is the day that I’ve been looking forward to for a long time… my 70th birthday! When I was diagnosed with my first cancer nine years ago, I didn’t expect to live to see this day, but here I am and it feels like a victory!

Months ago, I began to think about what I wanted to do to celebrate this milestone. Being an avid traveler, the first thing that came to mind was a trip. I visualized us packing a suitcase and climbing aboard a plane for the first time in over three years. Where would we go? The possibilities were endless, but Newfoundland was high on my list. We’d explore its rugged landscape, visit isolated coastal villages, and eat our fill of fresh seafood! Yes, Newfoundland was a definite possibility.

Then came hubby’s cancer diagnosis and the all-important consultation with a specialist to determine whether or not he’d be able to have surgery was booked for October 4. So, we’d be in Edmonton, not Newfoundland or some other more exotic location. The iconic “going to Winnipeg” ad that used to air on Canadian TV came to mind.

Oh well, there are lots of things to do in Edmonton. I looked into booking a hot air balloon ride as that’s been on my unwritten bucket list for a long time. We’d enjoy the fall colours in the river valley as we drifted silently over the city and then we’d sip champagne when we came back to earth. Unfortunately, however, the hot air balloon season closed last week! I’d have to think of something else. 

Then came Covid and even the long awaited doctor’s appointment had to be postponed. So here we are at home, doing nothing but watching rain fall outside the window! Earlier in the week, I felt pretty depressed about the lack of a plan for celebrating this special day, but we’re both feeling better and we’ve put in our five plus days of isolation. Regardless of where we are (or aren’t) and what we’re doing (or not doing) I’m 70 and I’m excited to be here! 

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Now, what will I do with the rest of this day?

Here we go again!

/ edebock / 10 Comments

We were camping almost nine years ago when my doctor called to tell me that I had cancer. The news was completely unexpected and, in that moment, our lives changed forever. We were camping again this summer when hubby’s urologist called to tell him that he has two different kinds of prostate cancer, so here we go again!

A recent biopsy took 12 tissue samples from Richard’s prostate. Two of those, taken from one side of the heart shaped gland, showed a low-risk, non-aggressive cancer that is common in older men and usually requires nothing more than surveillance. Unfortunately, one sample from the other side proved to be a somewhat more aggressive form. According to the Gleason score, a scale used to evaluate the grade of prostate cancer cells, it’s a medium-grade cancer meaning that treatment ought to be considered.

There are several possible options. Surgical removal of the prostate, in spite of the fact that it has some negative effects, is thought to be the best choice for long-term survival, but the urologist warned us that the maximum age for a radical prostatectomy has always been a matter of debate and many specialists consider 70 to be the upper limit for performing this surgery. At 72, Richard is otherwise in excellent health and physical condition, so he has been referred to a specialist who does robotic prostate surgery, the most advanced treatment option available. We are praying that he’ll be approved and that the procedure will go ahead. If not, we’ll have to consider other options.

Over the past nine years, we have learned many things. The word cancer, itself, isn’t as scary as it once was. Though not to be taken lightly, it isn’t necessarily a death sentence either. We’ve learned to live life to the fullest and to consider every day a gift. We’ve learned the importance of living in and enjoying the moment. We’ve learned that a positive attitude makes the fight easier and adds to the quality of our days. We’ve learned not to worry about things that haven’t happened yet. As Matthew 34:6 says, “do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” We’ve learned to focus on the things that are important in life and to let go of things that drain us for no good purpose. We’ve learned that there can be joy in the midst of challenging times. These are all lessons that we’ll take with us as we embark on this next journey.

Ultimately, we know that we have a God who walks this pathway with us and promises to take care of us. “Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

imagesAs always, the blog will be about more than cancer, but from time to time I will be using it to share progress reports. The only difference from the past will be that now I’ll be reporting on both of us!

Another diagnosis, another pill

/ edebock / 3 Comments

No, it’s not another cancer this time!

Seven years ago, I was diagnosed as pre diabetic. I managed to control it with diet alone until recently when I gradually slipped into the diabetic range. Though I’d originally hoped that this would never happen, it comes as no real surprise. In some ways, I’m not a usual candidate for diabetes. I’ve never been overweight, I’m not a smoker, and I ate a healthy diet and exercised regularly long before the pre diabetes diagnosis. In addition to a family history of diabetes, however, the injection of Sandostatin that I receive every 28 days for my neuroendocrine cancer (NETS) can suppress the release of insulin and cause elevated blood glucose levels. With those two strikes against me, I’ve now reached the stage where I need medication and my doctor has prescribed Metformin, the most common treatment for type 2 diabetes. I’m also going to be meeting with a dietician to find out if there are ways that I can further tweak my diet.

If there’s one good thing about having NETS, it’s the fact that the regular surveillance that it requires brings other health issues to light before they become as serious as they might otherwise. Typical symptoms of type 2 diabetes include increased thirst, frequent urination, increased hunger, unintended weight loss, fatigue, blurred vision, slow-healing sores, and frequent infections. I have experienced none of these. If it wasn’t for the regular blood tests that I undergo because of my cancer, I likely wouldn’t have known that I was pre diabetic seven years ago and without the dietary changes that I made back then, I probably would have reached the diabetes threshold much sooner. Looking for silver linings helps me maintain a positive attitude!

I don’t share these health updates to garner sympathy. In spite of cancer, diabetes, and several other health concerns, I continue to enjoy excellent quality of life. Hopefully, with the help of medication, excellent health care practitioners, and healthy lifestyle choices, that will continue for a long time yet!

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