Skip to main content

Tag on tour

I belong to a Facebook group for people taking Tagrisso (Tag for short). Occasionally people  post pictures from their travels with the caption "Tag on Tour" to show that Tagrisso is enabling them to travel and living a full life despite cancer. Well, I'm now at the point where I can start my own tours on Tag. We drove to 8 hours Grand Rapids, MI for Thanksgiving--the first time seeing my Michigan family (including my 95-year-old dad) since July 2021. I arranged to get a portable oxygen concentrator with continuous flow and used that in the hotel room overnight.





So I knew I could travel safely by car. But what about flying? The missing piece was a test to determine how much supplemental oxygen I would need at altitude. My pulmonologist ordered a high altitude simulation test, but--of course--it wasn't available at any hospital within a 2-hour drive of State College. Leland was out of town, so my friend Allison got up at the crack of dawn to accompany me to Pittsburgh last Friday. 

I had to wear a tight-fitting neoprene contraption with a big hole where a tube attached. This supplied me with air containing 15% oxygen (vs. 21% in regular room air) to simulate high altitude on a plane. Every minute a nurse wrote down my pulse and oxygen saturation. When I dropped to 90%, they put me on 2L/minute supplemental oxygen and continued the measurements until the 20 minutes were up. It took only 4 minutes for me to drop to 90% and I stayed in the high 90s once the supplemental oxygen started. So 2L/minute is the magic number (my portable goes from 1 to 5L). 

After getting these results, we made plans to fly to Minnesota for Christmas. Not gonna lie: I'm not thrilled about getting on a plane again, since the last trip was so traumatic. But these will be two short plane rides and my health has improved dramatically since July 28. 

We are also making travel plans for Lily's club volleyball tournaments from mid-January to end of May, all within 2-4 hours' drive (Pittsburgh, Lancaster, DC). After 5 months of basically staying at home, I'm finally well enough to start exploring again. 

Comments

  1. AnonymousDecember 10, 2022 at 12:35 PM

    Great!

    ReplyDelete
  2. IreneDecember 10, 2022 at 12:39 PM

    Wahoo, praising God that you can take to the roads & skies for travels, Esther! Here's to more "Tag on Tour"! Love the Thanksgiving photos with your dad...so sweet.

    ReplyDelete
    Replies
    1. Esther PrinsDecember 10, 2022 at 3:32 PM

      Thanks, Irene! I hope we'll get to see you in DC during Lily's tournament.

      Delete
  3. AnonymousDecember 10, 2022 at 2:46 PM

    Love to see you surrounded by your family! I’m so glad you got to see everyone in GR! Makes my heart super happy! Here’s to more great adventures! ~melis

    ReplyDelete
    Replies
    1. Esther PrinsDecember 10, 2022 at 3:32 PM

      Indeed! We got to explore downtown GR really for the first time. Such amazing public art, esp. murals.

      Delete
  4. AnonymousDecember 10, 2022 at 3:40 PM

    Wonderful news !

    ReplyDelete
  5. AnonymousDecember 10, 2022 at 4:25 PM

    Esther, What a delight to see you with family in Michigan! Thanks be to God for this answer to prayer. Great to hear of your travel plans.
    Laura

    ReplyDelete
    Replies
    1. Esther PrinsDecember 11, 2022 at 1:55 PM

      Thanks, Laura. I hope you had a great Thanksgiving.

      Delete
  6. Leslie CDecember 10, 2022 at 8:20 PM

    So good to hear! Was wondering if all went well and stayed well after the visit! Keep the positive news coming and have a beautiful holiday season.

    ReplyDelete
  7. AnonymousDecember 11, 2022 at 3:05 AM

    Wow Esther so good to hear you that you are able to travel. I can’t wait to hear more! The whole family looks great. (Henson)

    ReplyDelete
  8. AnonymousDecember 11, 2022 at 9:56 AM

    This is fantastic news and major progress, have a great time out there adventuring Esther! Kathy S

    ReplyDelete
  9. AnonymousDecember 12, 2022 at 12:19 PM

    Praises for God's goodness in providing such amazing medical technology! We are so excited to get to be with you guys & to celebrate Christmas together in MN!! And can't wait to hear all about volleyball from Lily!

    ReplyDelete
    Replies
    1. Esther PrinsDecember 12, 2022 at 12:54 PM

      I assume this is from Kim. We are looking forward to seeing you all!

      Delete
  10. Alix ShutelloDecember 13, 2022 at 8:25 PM

    Hi Esther: I am so happy for your success. I love your how your family rallies around you and I totally appreciate your need to get around and continue traveling.

    ReplyDelete
    Replies
    1. EstherDecember 14, 2022 at 9:38 AM

      Thanks, Alix! I know you can relate to feeling confined if you go too long without exploring!

      Delete

Post a Comment

Popular posts from this blog

Healthcare costs and insurance woes and victories

Those of you who have read this blog from the beginning may recall my posts about how inexpensive healthcare is in Germany compared to the US. I now have additional proof. I've been receiving "explanation of benefits" statements from Aetna detailing the cost of my hospital stays and other healthcare services since the end of July. Close your eyes and guess how much these amount to. Higher. No, higher. Still higher. Well over $200,000. Of that, I have paid maybe $100 plus some $20-30 co-pays for doctor's visits. Add to that my cancer and blood thinner medications, which would cost about $16,000 per month without insurance. I have no idea what people in my situation do if they are uninsured or under-insured. My recent interaction with one of my German doctors illustrates another stark difference. Before leaving Germany, I had asked my doctor what to do if I received bills from the LungenClinic after we had moved and closed our Deutsche Bank account (all bills in Germany...
15 comments
Read more

A failure of institutional care

I just hit "send" on this letter to my dean and associate dean. Mic drop. I've never sent such a scathing letter, but it's definitely called for in this situation. I'm not expecting anything other than a "Oh, that wasn't how we intended to make you feel; our hands were tied" email. Dear Dean Lawless and Associate Dean Lloyd, When I wrote to Professor Land [my department head] to see if I could get a course release this fall due to having lung cancer plus complications from pulmonary embolism and COVID, I had no idea what I was in for. When faculty friends in other colleges have had health crises (ones that don’t warrant a full-semester medical leave), their department head or dean has simply said, “Don’t worry about teaching this semester. We’ll figure it out.” I figured the same would happen in my case. To be blunt, the way that my case was handled was a colossal failure of leadership. As my husband and I have shared my story with colleagues at PSU ...
26 comments
Read more

regular update

I had my regular oncology appointment in Pittsburgh yesterday. Dr. Villaruz said the scans look good and everything is stable. Although I don’t have much scanxiety nowadays, it’s always a relief to get good news. Just to be sure that my understanding was correct, I asked her why I’m not a candidate for surgery. It’s because of the cancer’s growth pattern. The one nodule that’s visible on the CT scan could just be scarring; she’s not sure if it’s a tumor. When I was diagnosed, I was told the lung cancer was “lepidic.” This means that the tumor cells were growing along the lining of the alveolar structures (air sacs).* That’s why my lungs looked like they were draped in cobwebs. You can’t do surgery in enough places to get all of it. Thankfully, Tagrisso swept out those cobwebs – and continues to do so. We go back in December for a regular appointment. *Lepidic spread tends to be slow-growing, with minimal invasion of nearby tissues, less chance of metastasis, and overall better progno...
10 comments
Read more