CLL, Covid-19, Evusheld: Links, Random Thoughts and Thankfulness!
It's been quite a while since I have posted on my blog about CLL. (I guess it's actually been a while since I have posted anything!) But there are a few links I wanted to share and I'll throw in a few of my random thoughts as well. (Links below.)
This pandemic has taken a lot of our emotional energy. All of us. I have not carried as heavy a load as those working in healthcare, education, essential services and communities of faith. (I can't imagine the challenges of trying to lead well through such a time as this, amidst all the painful division.) I haven't carried the load of a parent juggling remote learning along with their normal paying job. I haven't even carried the responsibilities of a stay-at-home parent raising and trying to protect their children through such a time as this.
For John and me, there have been two major challenges. The secondary being the survival of our business. But the first and foremost concern has been protecting John from Covid-19. For anyone in the immunocompromised community, you know how threatening this virus is to those who lack a healthy immune system. Even the vaccines do little to nothing for this group of people because one needs a healthy immune system to mount a healthy immune response to the vaccine, resulting in the spike protein antibodies being produced. After four shots, John is still without antibodies. And he is just one of many. "Getting back to normal life" is not a reality for the immunocompromised and their families yet, but we are still happy for those who are returning to normalcy. And we celebrate the light at the end of the tunnel.
For all of my healthy friends, I urge you to remember that you are surrounded by people with compromised immune systems whether you know it or not. This is a fairly large community of people and many of them do not look "sick" or obviously compromised. They can appear as healthy as the next person and still be vulnerable. That's why they have needed the protection of the overall community. (I throw that in because so many in this community have felt an emotional isolation as this pandemic has moved from a public health concern to a political war.)
I am thankful we are both in good health. And I am thankful neither of us have contracted Covid-19. We have taken every precaution recommended by the experts. And while the threat is still real to this category at high risk for severe Covid, at least we are not still washing our groceries. (I hated washing every item in the garage before bringing it inside.) There has been progress in monoclonal antibody treatments. And thankfully we are seeing a dramatic decline in new cases. I am excited about attending a friend's small wedding in April (without John). This will be the first celebration I have attended in two years. (The last celebration I attended was a wedding, two weeks before the initial lockdown.)
While I have discovered through this experience that I don't need nearly as much social interaction as I previously thought I did, I do miss family gatherings and celebratory events. My oldest niece has given birth twice since pandemic life began! And I had to miss her baby showers because I couldn't risk being exposed to Covid and carrying it to John. As hard as these sacrifices have been in the moment, I have always viewed them as a small fraction of the sacrifices being made by those fighting this deadly virus on the front lines and devoting all their energy to saving lives. I have "sacrificed" from the comfort of my home, spending too much time in the kitchen and too much time binge watching streaming platforms. (No awards for toughness earned by me.)
I co-facilitate a Nashville CLL Support Group sponsored by the CLL Society. Prior to the pandemic, we met in person. Since the pandemic, we have held meetings on ZOOM every other month. These meetings can be quite helpful for patients to share information and receive moral support. If you are in the vicinity of Nashville, TN and would like to attend our meetings, you can sign up here: https://cllsociety.org/cll-specific-patient-support-groups/.
Because of the high risk of Covid to CLL patients, there has often been a desire expressed for more guidance on avoiding and treating Covid in our community. There is a lot of information available on both Covid and the management of CLL. But not everyone is adept at accessing it. So I thought I would share a few recent links on my blog.
This is a link to an action plan for CLL patients: CLL Society Covid-19 Action Plan
THIS WEDNESDAY, Patient Power will host an online event: Evening with the Docs. This is a live Q and A session on ZOOM and Facebook. If you register for this free event, you can send a question in right away. The host is Michele Nadeem Baker, a CLL patient-advocate and community leader. Here's a link to the details: Evening with the Docs - Patient Power.
This is a podcast for Caregivers: CLL Caregiver Lifehacks Podcast by OffscripHealth.
Those of you in the CLL community are probably aware of several newer monoclonal antibody treatments in scarce supply (at the moment). Many of us are searching for the availability of Evusheld, given prophylactically (to prevent Covid) for those not producing antibodies from the vaccines. Here's a link to information about Evusheld and a link to a Locator Website. John has an appointment to receive Evusheld at the end of February. We located available doses in another state. By contacting the site where doses are available, you will be informed about what is required from your doctor to secure an appointment.
There are additional websites by state. Search: "Covid-19 Therapeutics Locator" and the state you are interested in.
And last but not least, the CLL Society updates their website with the latest guidance and information. Please visit their site for the latest updates on CLL.