Navigating the VA

A few of you who are reading this have been in the military/are in the military/have dealt with the VA system. In spite of all the bad press (most of it related to administrative problems and not actual quality of care) I am certainly a fan of having a VA Medical System. Yes, admittedly it is more easily used by those who are in the larger cities and more challenging for those in remote locations. No, it is not military sick call, nor can you dictate a list of what you want and expect to just be handed a bag of medications.

The price for most of us is certainly right. The system does means test those coming in with non-service related medical problems. At least that is what I have read. Considering that the VA considered me 100% I haven’t had to worry about any paperwork other than to keep repeating “I don’t have any other medical insurance.

In the back of my mind, I had the occasional feeling of guilt about being considered “disabled.” After all, the non-Hodgkins lymphoma on which they rated me (plus secondary resultant medical conditions which certainly are valid) was back in 1995. Since I never received chemo or rads, I was considered in remission rather than cured. Remission implies disease could possibly come back. Almost unheard of after 15 years, but the possibility always exists.  Meanwhile, an amount lands in my savings account every month

Some of this moved to the front of my mind when I flew home from the UK rather than take the Navigator. Something just wasn’t right. The ER doc at the SF VA wasn’t impressed with my concerns. He ordered some routine stuff and told me to follow up with primary care. This was a Friday night. On Monday I went over to the Oakland Outpatient VA Clinic who did take me seriously. Labs were ok, exam wasn’t normal and most certainly my ultrasound wasn’t. Had the pleasure of getting my first CT in almost two decades on an urgent basis. Huh – what the ???? is that where my right kidney should be. Since I’m not exactly fat, a mass in my abdomen takes talent to miss.

Since then I have met some lovely providers and talked to several more on the phone. The extremely knowledgeable and kind urology staff of the Sacramento VA called and said that I needed to have a biopsy soonest but she didn’t think it was going to be diagnosed as renal. The interventional radiologist (same place) was amazing; pathology came to do on the spot touch preps as well as take samples for further diagnostics. Their assessment? You had it before and it is baaaackkk… (Fenton – Death Sheep from Hell kept running through my mind  – the Tom Smith song from 1992/4). Following that starts the rounds of “get this lab, see that person, you need a couple more tests, there is this thing called a port……”

I’m neither amused nor dancing with joy. I had a lot of travel planned for after the first of the year:

  1. Lapland for wildlife and Aurora photography in Jan
  2. Amazon cruise and Machu Pichu with George in Feb
  3.  The final two cruises of the Legend in March
  4.  April starts the As home game season
  5. End of April through mid-may on the Rhapsody followed by a meeting in Barcelona
  6. and then potentially an OAT trip lasting till mid-June.


Obviously my schedule has had to undergo a bit of an adjustment. I’m still talking with SAS about being able to move my airfare to next year (rather than lose it completely). The lovely guys in Sweden were able to fill my slot and gave me a complete refund. Transfer to something else for Feb is being worked on. I’ll swap the Rhapsody TA for 8-11 in Munich for a NATO meeting followed by ISTM in Barcelona the following week. OAT has been slid.

My oncologist is willing to work with me on a treatment schedule that is not going to leave me weak and hairless. Unless something amazing comes up on the last rads test I have a chronic and indolent lymphoma. It has probably been growing for a long time. You control it; cure is not really feasible (without taking me out in the process).

Next week I get to go over to the SF VA (again) for a confirmatory opinion and hopefully the first round of treatment since my tumor size dictates that in-patient would be really, really smart. I’ll keep up the commentary here. Since for the next few months there isn’t going to be much travel going on, I won’t be offended if you don’t chose to drop by. Other than my whining, anything else is likely to be about knitting, sewing and reading.

Oh, and sleeping. Sleeping is really good!

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About Holly

fiber person - knitter, spinner, weaver who spent 33 years being a military officer to fund the above. And home. And family. Sewing and quilting projects are also in the stash. After living again in Heidelberg after retiring (finally) from the U.S. Army May 2011, we moved to the US ~ Dec 2015. Something about being over 65 and access to health care. It also might have had to do with finding a buyer for our house. Allegedly this will provide me a home base in the same country as our four adult children, all of whom I adore, so that I can drive them totally insane. Considerations of time to knit down the stash…(right, and if you believe that…) and spin and .... There is now actually enough time to do a bit of consulting, editing. Even more amazing - we have only one household again. As long as everyone understands that I still, 40 years into our marriage, don't do kitchens or bathrooms. For that matter, not being a golden retriever, I don't do slippers or newspapers either. I don’t miss either the military or full-time clinical practice. Limiting my public health/travel med/consulting and lecturing to “when I feel like it” has let me happily spend my pension cruising, stash enhancing (oops), arguing with the DH about where we are going to travel next and book buying. Life is good!
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33 Responses to Navigating the VA

  1. Dawn says:

    Holly I’m sorry to hear about your diagnosis but glad that have a doctor who is willing to work with you on a treatment plan that won’t leave you completely debilitated.

    I hope that everything goes as well as possible and that I get to visit with you on the high seas once again.

    Take care and keep me posted on your progress.

  2. Val says:

    Holly, I’m terribly saddened to hear this news. I hope this new journey you’re on is very short and ends with a full recovery. Prayers to you and your family.

  3. Janet says:

    I have never met anyone stronger than you. You will emerge from the abyss… The VA is a phenomenal system, and I think the Fort Miley (SF) folks are among the best in the world. Please keep blogging. Let us know hoe we can help you in your battle…

  4. Liz says:

    I am so sorry to hear about the bad medical news! 🙁 I hope you get some definite answers soon and world class care to boot.

    I have been enjoying your travel updates for over a decade and am looking forward to many more in 2017 and beyond.

    Thinking of you!

  5. Barbara says:

    I’m sorry you have to deal with this! Sending affection – keep us posted.
    Btw I was in Iran! Took a two week tour. Crazy huh?
    Will be sending good vibes –

  6. Alison says:

    If losing your hair means keeping your life—should it come to that—my oldest can tell you the best places to buy wigs online and how to make sure they’ll fit.

    Besides, when else would you get to be a flaming redhead if you wanted? Or a Dolly Parton head? Or just plain long and gray, a look I quite like.

    Glad you’ll be posting.You and George are in my daily prayers.

  7. Bonnie says:

    Shit. I’m so sorry to hear this. I knew you had a history of cancer. Didn’t know what type, or how long ago. This sucks.

    I still want to hear your updates.

    Let me know what, if any, support you need from my end.

  8. Pat says:

    Oh crap!
    Just stay strong and stay in touch.

  9. Cat says:

    I want to know how you are getting on! I can’t be there to hold your paw but I can read and I will listen by reading and I will send virtual hugs and I will think of you and…well if there is anything at all I can do long distance then for goodness’ sake let me know!
    Love and hugs

  10. Brad says:

    I am sorry you were right, but glad you flew back. I didn’t sign up to hear about your travels, but to keep in touch with a friend.

    Nothing’s changed.

  11. Kathy says:

    Oh crap! I am sorry the lymphoma is back. Do you know what kind of treatment to expect? How do you expect things to change for you, besides rearranging your plans for 2017? Crap, crap, crap!

  12. Dominik says:

    Oh boy, what a bummer. Please keep me on the list, and don’t hesitate to write even private messages, when you feel like it.

    It is the little I can do from afar.

  13. Margo says:

    Wow, Holly, thank you for letting us know about this.

    I am so sorry to hear about this and absolutely hope that the treatment is successful so that it ends up being nothing more than an annoying interruption to your travel plans. The VA system sounds amazingly good, and I’m sure it helps that you know your way around it!

  14. Angela says:

    So sorry to hear all this. Just wow.

  15. Egbert says:

    Oh dear, I have no words available.
    Keep up your great spirit, we love you and God bless.

  16. Donna says:

    God Bless you Holly…… Please keep me up to date. My prayers and thoughts are with you.

  17. Ruth says:

    Good thing you’re paying attention to your lymphoma.

    Go do inpatient, bring your knitting and a bunch of books, both audio and hard copy. I’ll be rooting for you!

  18. Bob Arisohn says:

    Our prayers and thoughts are with you as you navigate this process. Hopefully, your travel and other plans may be delayed but not scratched completely. Not great contributors but really enjoy following your meanderings and the updates on yourself and family. Regards to all, and the happiest of holiday wishes

  19. Rebecca says:

    Sorry to hear the lymphoma has returned. How are you feeling? You mentioned being tired, any other symptoms? How long will the in-patient teatment last? I don’t think I know anyone as physically strong or medically knowledgeable, and therefore capable of navigating the VA, to receive proper treatment as you. I wish you well on the journey back to cruising the world. And please do not remove my name from your email list. I appreciate your inside view of the VA, your medical insights, and the knitting tips.

  20. Vera says:

    keeping fingers crossed for minimal discomfort with the treatment and full recovery or at least remission for next 30-40 years.
    Let me know if I can help out anyway.

  21. Ann says:

    So sorry to hear about this all. Do you feel that being an MD changes your treatment? Do you feel more involved? Taken more seriously? Just curious.

  22. Isobel says:

    Oy. That really, really sucks.

  23. Irina says:

    bitte denke positiv; die erste Krankheit hast du gut überstanden- diese Krankheit wirst du auch schaffen. Genieße das Leben, so dass du noch viele schöne Erinnerungen und Eindrücke sammeln kannst.

  24. Mitch says:


    We’re all pulling for you. Please keep us posted on developments and your travels when they resume.

  25. Zandra says:

    Just read your email, as we are on a Princess cruise with no internet, but have it now at the Cheeky Monkey in Puerto Vallarta. We are both so sorry to hear about your recent health crisis. You have been added to our prayer list.

  26. Christian says:

    I guess I’m not the first one to answer your mail. Thank you for letting me know, I nearly fell off my chair this morning. I wish you all the best – but I think you were kidding about dropping someone off your list. Please keep me posted!

  27. Beverly says:

    This is indeed bad news – poor you. I wish you all the best for the coming weeks – especially that you don’t have a tough time with the treatment and that the lymphoma is brought swiftly under control. Friends and correspondents are for all times, not just the good ones. But if there are times when even e-mailing is too much trouble, I will understand and try not to worry.

    With very best wishes, especially for a speedy return to better health.

  28. Anita says:

    Words cannot express my sentiments right now.. put simply, I’m dumbstruck. You are of course, in my thoughts and prayers.. well you’re never truly out of my thoughts, ever.. such is the impression you left with me. I’m pleased that you are getting treatment, heck a lot faster than the UK medical people would kick in and surrounded by your family, so I hope that everyone pulls for you to help you with the challenge.

  29. Steven says:

    Well! I’m glad that you are getting the level of care from the Sacto and related staff.

  30. Linda M says:

    I’m really sorry to hear your health news. I hope your treatment goes smoothly and you are able to get back to traveling and enjoying things soonest. I’m happy to stay and keep you company in the background.

  31. Ruth says:

    Was saddened to hear of the return of your lymphoma, but pleased at your attitude of basically choosing to keep doing the things you planned to do. In the “for what it’s worth” category, I am praying that treatment is both effective and not too disruptive to your life and general well being.

    Still hoping to manage a visit at some point before you fly/train/sail off into the sunset again.

  32. Beth says:

    As with everything that you do, you are “cruising” through this particular issue armed with acute knowledge, understanding and strength. Surely you will have a full inventory of items to keep you busy–(yarns you have picked up along the way, wooden and complex puzzles, cruising maps that you can finally evaluate with optimization suggestions on routes, and of course, all the many friends, who like Velcro, have stuck to you as you rolled about the world.)

    You have been through this before and have come through with flying colors. Let’s hope you can pull this feat off once again. I will be thinking of you. Keep your many fans posted.

    My very best to you and George.

  33. Lorette says:

    Oh Holly. I’m just now getting caught up on this. I’m sorry you are going through this again. Please know that you are in my thoughts and prayers.

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