supporting those with lymphoma

I admire Rep. Jamie Raskin of Maryland. He is a lawyer and Constitutional scholar just beginning his fourth term in Congress. He served as an impeachment manager in the second trial of Donald Trump and just completed his work on the 1/6 Select Committee.

It’s heartbreaking that he lost his son just days before the 1/6/21 attack on the Capitol. I admire Rep. Raskin’s ability to continue in public service in the aftermath of both personal and national challenges.

He has recently announced a new challenge, a battle with lymphoma. He is about to embark on chemotherapy and plans to continue working while he is being treated. I wish him every success in beating his cancer.

I have a college friend who is also currently in treatment for lymphoma and continue to pray for her full recovery.

I have a lot of hope for their long-term remission because treatment protocols for many types of lymphoma have a good record of success.

My father, known here at TJCM as Paco, was diagnosed with lymphoma about twenty years ago. He received chemotherapy and lived to be 96 without a recurrence. I know my father’s experience is anecdotal, but, for me, it helps to have a personal story to add to the data and statistics.

I invite readers who are so inclined to send out healing thoughts/prayers for Jamie Raskin, for my friend J, and for all those dealing with lymphoma. People who are in a position to make a charitable donation may wish to support the Leukemia & Lymphoma Society , which is highly rated by Charity Navigator.
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In one of those bizarre coincidences, I had drafted this post earlier, planning to use it for Linda’s Just Jot It January at some point. When I looked up today’s post to do the pingback, I found out the prompt word is “cancer.” Obviously, this post was meant to be shared today.

long COVID and ME/CFS

One of the fears that I have about COVID is the risk of experiencing long COVID, where any number of a vast constellation of symptoms occurs for months/years after the acute infection phase.

The symptoms are very similar to those that characterize ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I have a family member with ME/CFS, so I am achingly familiar with the level of disability that can result. ME used to be referred to as fibromyalgia in the US, but now the ME designation is more common.

The October 5, 2022 edition of the (US) National Public Radio show On Point features an extensive discussion of long COVID and ME/CFS and how long COVID researchers and clinicians are learning from their peers who have been working for years on ME/CFS. All of these conditions are underdiagnosed and undertreated, so I wanted to share this with all of you. I believe this link will permanently take you to a recording of the episode. If the link breaks, you can try searching from the On Point link above or searching on your favorite podcast platform.

Anyone who has experienced these conditions or seen a loved one contend with them knows how difficult they can be. I want to raise awareness so that everyone affected can get the help they need. I also want everyone to realize that these conditions exist and are serious. Too often, affected people are dismissed and told their symptoms are “all in their heads.” While there is still much to learn, help is available, although it may be difficult to find, depending on the medical resources nearby. I hope we will all support research and treatment expansion so that the millions of people affected get the help they need.

DT and COVID

As I’m sure the whole world knows, the president of the United States is hospitalized with COVID-19. It’s been a bit difficult to get the straight facts on his condition, but it is increasingly looking like his case is on the more severe side.

He does have multiple risk factors, including his age, gender, and weight. He is being treated aggressively by his medical team, including with an experimental antibody treatment and with remdesivir. These are both given early in the course of the disease to help the body fend off the virus.

Today, though, it was revealed that the president is being given the steroid dexamethasone, which is usually given only to more severe cases later in the disease course, when there are significant lung complications and/or the need for a ventilator.

The medical team is even talking about the possibility of discharging him back to the White House, which does have its own sophisticated medical unit, tomorrow.

This doesn’t seem to add up. If his condition warrants dexamethasone, it would seem best to keep him in the hospital for close observation.

Another concern is that days seven through ten of COVID often see an exacerbation of symptoms. The president is only on day four. It seems it would be much safer to keep him in the hospital. It’s not as though he is cramped for space or lacking amenities in the presidential suite at Walter Reed; besides medical care, it also has its own secure conference room and kitchen/dining space.

I also wish that the president would temporarily sign over powers to Vice-president Pence in accordance with Article 25 of the Constitution. We know that the president has suffered with a high fever and times when his blood oxygen level has dropped below normal. COVID is nothing if not unpredictable. Foreign powers could take a provocative action, surmising that the president would not be well enough to respond appropriately. I think it would be safer for the country to have the vice-president, as long as he remains well, exercise the presidential powers until the president is fully recovered. Pence can always confer with president when his symptoms are well-controlled, but he would have the power to respond on his own if the president were to be unwell when a crisis arose.

The president and First Lady’s illness with COVID would be problematic enough, but a number of senators and other government and campaign staff and advisors have also been infected or exposed. Because the incubation period can extend to fourteen days, there are many people who should be in quarantine to make sure they don’t expose others while pre-symptomatic or asymptomatic. Somehow, despite the seriousness of the situation, Sen. Mitch McConnell plans to push ahead with the confirmation hearing of Amy Coney Barrett to the Supreme Court. He considers that worth the risk, while he won’t put the latest House-passed coronavirus relief package up for a vote.

Voters, pay attention to how candidates on your ballot are handling this health and governmental crisis. Are they prioritizing your and the country’s health and well-being or their own power?

JC’s Confessions #11

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, now a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.
~ JC

I find it easier to deal with suffering that isn’t right in front of me.

There is still concern and worry, but it is much less likely to reach a paralyzing level.

With the pandemic, I know there are many people suffering in many places around the world. There is a certain level of continuing worry and heartache.

Still, it is not as painful for me as being with someone who is suffering.

Some of the most difficult things I have had to deal with in my adult life have been medical issues with my family. Some of these have been difficult to diagnosis conditions with my children which have resulted in being home with them continually and not having effective treatment available. It was so stressful to see someone need to hold onto things to be able to navigate, to know that there was only enough strength to make one trip a day up and down the stairs to the bedroom, to not be able to relieve constant pain.

And it is always there in front of you and, despite different doctors and their opinions and hours on the phone with the insurance company and trying everything the doctors recommend, you are helpless.

Somehow, though, when suffering is at a distance, I can imagine that, perhaps, things are not as dire, that things are bearable or treatable or maybe even okay. Sometimes, I can even banish worry for a little while.

I don’t know if other people find it more painful to witness suffering of a loved one firsthand or to be seperated from them. It’s not something that people tend to discuss.

I only know that it is much more painful for me to watch a loved one suffer, especially when everything I can do seems so small in the face of the problem.

heart update

I just got word from my sisters in NYC that Nana’s aortic valve replacement is complete and successful. They also had to install a pacemaker, which is common in these kinds of situations.

Hers was the second procedure of the day for her surgical team. The first ran long, so her procedure was delayed, making the day  – and the waiting – longer than anticipated.

It’s so amazing that doctors can replace a damaged aortic valve with a functioning bovine one without having to go through the chest at all. Instead, they use a technique similar to heart catheterization. It is called TAVR and you can read a bit more about it on the Columbia Structural Heart & Valve Center website.

We are so grateful to everyone at the Center and Nana’s whole medical care team for making this possible. We are also grateful to everyone who has been supporting us, in person or at a distance, with prayers, cards, well-wishes, calls, emails, etc. Thank you all so very much!

 

The eyes have it.

Yes, it is a bad pun. It also illustrates why I almost never engage in wordplay; I am not good at it.

For the past several years, I have been having increasing difficulties with my vision. Last summer, my optometrist told me he could no longer fully correct my vision in my left eye. When I did get new glasses made, I had so much trouble seeing that I reverted back to an earlier prescription. Still, I was having periods where my vision was very blurry and my eyes were often very tired.

I blamed allergies or lack of sleep or some undiagnosed something. After months of frustration, an optician friend suggested that it could be low blood pressure. When I called my optometrist’s office, they consulted my records and said they didn’t think that was it because my blood pressure wasn’t low enough and that it was probably my dry eye and to use these drops four times a day for two months and call them back after that if I wasn’t better.

At which point, I was thinking “what dry eye?” as they hadn’t told me that that was the problem. Or considered that that was why they couldn’t correct my left eye fully. Or thought that that was why I couldn’t see well even with the new prescription.

I was not amused.

While the drops helped, it wasn’t enough.  My parents had seen an article for a new treatment offered by the ophthalmologist who had done their cataracts surgeries. I made an appointment for a consultation. He is busy so it was weeks away – and then he cancelled it right before the day arrived.

To expedite things, I made an appointment with one of his younger colleagues.

She confirmed the dry eye diagnosis and I started on some prescription drops in addition to the over-the-counter ones that I was using. My eye improved quite a bit, but I still couldn’t reliably get through a movie or a chorus rehearsal without my eyes bothering me.

I decided to try the new treatment, which would directly help the root problem, which is that the glands and channels which deliver the lipid components of tears were compromised.

Although the treatment was more arduous than I expected, it appears to have worked. I go for a six-week follow-up appointment later this week and am happy to report that I only have to use the over-the-counter drops a couple of times daily most days. I have even have some days where I did not need them at all.

I’m hoping that I will soon be able to have a standard eye exam and get a prescription for new glasses that I can trust to be accurate.

One less thing to worry about will be good.

April 8

I am going to preface this post with the statement that Nana is doing well, so as not to cause anyone undue stress.

On Friday, April 8th, my plan was to do a couple of things at Grandma’s cottage, which we were working on cleaning out, have lunch with a friend, and then head to Syracuse to bring daughter T home for the weekend, which would be her first time home since Grandma died on March 22nd.

A few minutes after I arrived at the senior community, my cell phone rang. It was my mom (Nana) calling from the emergency room. She had collapsed in the waiting room of a medical building across the street from the hospital. The rapid response team had done a couple of rounds of CPR on her and she was in the emergency room for monitoring and tests.

I used the speakerphone to tell B what was happening. He made arrangements to go to Syracuse to get T. I left messages for my friend not to expect me for lunch. Meanwhile, I drove to the hospital.

I was lucky to find a parking space in the visitors’ lot and rushed up the hill toward the emergency entrance, a cold wind blowing directly into my face, making it difficult to catch my breath. After an unusually mild winter, we had a couple of cold snowy weeks once spring had officially arrived.

Once I was able to get through the line and behind the locked doors of the ER, the wait was on. An EKG was done. The heart monitor was tracing green lines across a screen above Nana’s head. Blood was drawn for tests. They took Nana down for a chest X-ray. There was a line started in her arm, although she wasn’t hooked up to any intravenous fluids. She wasn’t allowed to eat or drink. We were talking to pass the time. The ER became increasingly busy and noisy.

Nana was having some pain in her back and chest. The nurse told us it was from the CPR. A small price to pay from having been brought back from death…

Several hours later, the physician assigned to her case came in. Nana was not dehydrated. Her electrolytes were fine. She hadn’t had a heart attack.

In fact, her heart had not stopped at all.

She had fainted, mostly likely from a combination of cold, wind, walking too quickly uphill in the morning when her medications tend to drop her blood pressure.

We were grateful that she was okay, although I admit that I have been struggling with the fact that a highly trained medical team missed her pulse and performed CPR when they should have been reaching for the smelling salts.

This was especially difficult as she has had to deal with a bruised chest and ribs over these following weeks. It was all unnecessary.

For me, it was also an extra measure of fear that pushed me within a hair’s breadth of melting down. I have been working hard at keeping myself functional during this stressful time. For a few hours, I felt as though I might not be able to cope with an added crisis.

Thank God that Nana and the rest of the family were spared what could have been so much worse.

 

 

 

IC September

I am not only an eclectic blogger, but also an eclectic follower and reader of blogs. While I follow other eclectic blogs, I also follow blogs focused on travel, food, photography, poetry, the environment, and many other topics.

I follow several blogs where people write of dealing with illness, particularly invisible illnesses, such as fibromyalgia. I do sometimes write here about being the parent of a child with fibromyalgia, but what I haven’t written about is dealing with invisible illnesses of my own. Today, in observance of Invisible Illness Awareness Week  and the close of IC Awareness Month, I have decided to write about interstitial cystitis, which has been part of my life for many years.

Part of the reason I don’t tend to write about having some hidden medical conditions is that I feel fortunate that I do not have the more severe symptoms that some others endure, although, if I am honest, I have to admit that my symptoms, especially when I am having a bad flare, do interfere with what I am able to do and where I am able to go. Again, I am lucky that my personal schedule is usually fairly flexible, so that I can arrange to stay home if I am uncomfortable or tired from being kept awake by symptoms. I am acutely aware that others have it so much worse and I am writing this not as a complaint but in an effort to share some information about a condition which, although relatively common, many people are unaware.

What is interstitial cystitis (IC)? 
Interstitial cystitis, also called bladder pain syndrome, is a condition that can cause recurring bladder and pelvic pressure or pain and increased urinary frequency and urgency.  The bladder lining often bleeds and, in more severe forms, develops a kind of ulceration called Hunner’s lesions. It is more common in adult women but can and does affect children and men, too. The symptoms often vary over time, with more severe flares cropping up from the baseline level.

What causes IC?
Researchers don’t know for sure. They think that some trigger event damages the lining of the bladder, with particles in the urine then further damaging the lining and causing chronic nerve pain. It is believed that the bladder lining is unable to repair itself because IC patients produce a protein that prevents the repair.

How is it treated?
Because the cause is undetermined, treatment centers on trying to alleviate symptoms and prevent flares. One of the most important things people with IC need to do is control acids in their diet. (For me, drinking soda or undiluted fruit juice is the equivalent of pouring lemon juice on a cut.) There are a few oral medications that help some people. Physical therapy can be prescribed. When the condition is more severe, there are medications that are delivered directly into the bladder, surgical treatment for Hunner’s lesions, and use of electrical nerve stimulators.

And for more fun and games…
IC often appears alongside other conditions, many of which are also poorly understood as to causation. People with IC often have allergies, irritable bowel syndrome, and sensitive skin. (Check, check, and check for me.) Other conditions that may occur alongside IC are vulvodynia, fibromyalgia/chronic fatigue syndrome, and lupus. I’ve actually taken part in research looking into genetic predisposition in IC patients, which is interesting as I have family history with some of the related conditions besides my own diagnosis.

For anyone who would like to learn more about IC, I recommend this site:  http://www.ichelp.org which is full of helpful information and links to more resources.

Please remember…
There are many, many people who deal with hidden medical conditions. Many of these cause chronic pain. And many of these people do not look “sick.” Please, have compassion. Be understanding. Don’t blame them if they have to change plans at the last minute or aren’t able to go out of the house because they are having a bad day – or an exhausted day because they had a bad night before. Remember that you are lucky to be having a good day and realize that a day may come when you need the same kind of support and caring that your friend or family member needs now.

– JC