I’ve Been Heard

Yesterday Gerry, Andy and I went to “Chemo Class” and learned about things to watch out for during my chemo (which starts on Monday, Aug 20 – our 25th Wedding Anniversary…) and get details on the average Chemo day, tips on dealing with the nausea, etc.

It was a good and helpful 40 minutes given by a pharmacy student and a nurse, very well done.  Thanks, HealthEast!

THEN my nudging and — yes, complaining — reaped the benefit of a meeting with two of the head honchos from the St. John’s Cancer Care Center AND my navigator (who is worth her weight in gold!)

We discussed the issues that had been bothering me, and to their credit they didn’t just pass along, “Oh, yes, we will DEFINITELY FIX THAT!” happy talk, but we had a REAL discussion about how the dynamics of the center are changing since the merger with Fairview, the drawbacks of staff shortages (and why it’s hard to just go off into a private room with a scheduler to comfortably set up my appointments.)

The discussion was good, honest, and I’m hopeful that if immediate results aren’t forthcoming, it won’t be for lack of notice or trying.  All I really ask is that they begin to SEE what could make the experience better for the patient, and seeing, begin to act.

So I WILL be getting my Chemo next week at St. John’s.  Then I have 2 weeks “off” during which time my doctor seems to think there’s a very good chance that I’ll need transfusions (the chemo I’ll be on is going to be pretty hard-core, Gerry found an article about it where it’s called, “R-CHOP” and it looks – daunting.

Gerry’s hematologist at Mayo, Dr. Sue, has become a personal friend of ours over the past 12 years.  We LOVE seeing her, we share a lot of sensibilities of East Coast Jew-adjacent folks and we laugh like nuts when we’re together.

Last November when I was absolutely knackered Sue picked up on it, and was a bit concerned when twice in a row I was permitted to give blood (my habit had been to give blood every 3rd month while Gerry was getting his own samples drawn) because  of low hemoglobin levels.  Instinctively, Sue knew something was up.

Sue has ALSO had her run in with Lymphoma.  The fact that our cancers intertwine between each other now seems bizarrely natural and familiar.

So Dr. Sue very much wants me to get a Mayo 2nd opinion, especially now that Stem Cell Transplant has been mentioned as a therapy to prevent return of the disease WHEN we are able to stop this nastiness in its tracks.

So during my two weeks off we’ll try to get me into Mayo for more testing.  We’re still looking into what this means in terms of insurance, and places where I might stay while in Rochester.  Financially we’re in a VERY different position than we were 12 years ago. At that point Gerry’s insurance, through his amazing union (IATSE Local #1) covered so much of our auxiliary costs (hotel room, food, etc.)

We’re NOT in that position this time, and 12 years of Gerry being disabled and me earning never quite as much as I’d hoped each year has put us on the back foot.  So we’re looking into Hope Lodge and other places/schemes whereby I could stay in Rochester for my one week on with Chemo, then back to St. Paul for my 2 weeks off.

And THAT is scary, too.  What if, while I’m home in St. Paul, I get complications.  This is all too big right now to take on in one swallow, I need to cut it into bites and digest it, which I will.

Gerry, who is the best human being I could ever be married to, has been thrown for a loop by this.  He is so helpful, so wonderful, but I also find that he’s oddly paralyzed by the idea that I have a disease that will be rocking his world and perhaps shattering it, too.

So I look to him for help that he is having a hard time giving.  And I have to realize this; Gerry is NOT Superman, even though he’d like to be.  Andy is wonderful, but learning the ropes.  The navigator at Health East is almost magical in her ability to understand and help, would I be able to find a social worker in Rochester who could fill this role?

All this is part of breaking down the problem to make it manageable.  Who knows, maybe Mayo will say there’s nothing they could do that HealthEast isn’t.  Maybe they won’t want to take me on.  Maybe my insurance makes this whole thing moot.

Stay tuned.  I hate having this cancer, I hate it like poison.

But I do love a challenge.

24 thoughts on “I’ve Been Heard

  1. I wonder about the following:-
    1. Air B&B for accommodation.
    2. Local Jewish Welfare Association or similar for support and maybe help with place to stay.

  2. Annie – I also went through R-CHOP for my lymphoma (just the plain, old Diffuse Large B-Cell variety). It is daunting — and nasty business (because cancer is creepy and the treatments are nasty). But that “R” in the R-CHOP? It is a game-changer for lymphoma! (It kicks some serious ass.) I will continue to send you the good juju. Endure. XO

  3. I’m so glad they were responsive and that you are able to check into options.
    I wish you much strength for that first chemo treatment. Sounds like a doozie!
    And happy anniversary! Have cake for breakfast!

  4. You sound like a sensible person, weighing the options, bite sized pieces, etc. I’m available if you need a driver or something. I know both St. John’s and Mayo all too well.

  5. Off the wall thought: apply for Care Credit. You can do it online. Originally just for veterinary costs, it can now be used for many things. I used it for my oral surgery. Why? NO interest for 12 months, so you could use it for your away from home expenses at least, and not have to take those out of pocket immediately.

  6. It’s great that you’ve been heard and had a chance for a full and frank discussion (I just love that F&F stuff). I’d be scared too, Annie, but I take heart in your last two sentences. We always seem to rise to our challenges, especially when it’s important to those we love. You have my thoughts and good wishes. The prayer wheel is spinning.

  7. Happy to hear you’ve met with the honchos at the hospital. Hopefully they follow through and will make things easier for you. Dealing with cancer is hard enough.

    I know you’re probably getting lots of advice about chemo but I have 2 things I wish someone had told me that I want to share. First, I got very painful mouth sores after the first round. The pharmacist gave me some special mouthwash that cleared it up but he told me to prevent them I should rinse my mouth with warm water with salt and baking soda after every time I ate. Worked like a charm. The other thing I learned is that the American Cancer Society has really nice wigs that are reasonably priced, look good, and super easy to care for. I had bought a real hair wig first that was very expensive that I couldn’t style. They also have nice scarves and hats. I got a night cap that was more comfortable than the hats I knit for sleeping. Hopefully you won’t lose your hair, but again I wish someone had told me.

    Everyone has a different experience but chemo wasn’t nearly as bad as I expected. Take a pretty afghan and maybe some soothing music – helps to shut out what’s going on around you. Hope it goes well- I’ll be thinking about you. I’m so sorry you’re going through this.

  8. Vibing only good things your way Annie. Contact the American Cancer Society for a local support group AND for transportation and possibly housing help getting to and from your chemo appointments. Look into the Mayo or HealthEast charity options.

  9. If stem cell stuff is on the table, Mayo really is your best bet, hands down. I’m glad you’re looking into it. *Hug*

    This all sucks. Big-time.

  10. I’m really glad that the navigator system is being reviewed. In centers that have efficient systems, it makes a world of difference for the patient and families. It makes the whole situation suck a taddy bit less.

    Gentle Hug

  11. After a long hiatus, I returned to your blog to take a look and was very sorry to read about your recent diagnosis. I was diagnosed with mantle cell lymphoma (another type of Non Hodgkin’s B-Cell lymphoma) two years ago and underwent chemo and a subsequent stem cell transplant. Thankfully the treatment was successful and I am currently in remission. As a physician (a pediatrician) I was fully aware of all of the side effects of the oncology medications -they are pretty similar for most of them-nausea, vomiting, hair loss, anorexia, mouth sores, neuropathy (nerve problems like pain or tingling in the hands and feet) and extreme fatigue. Fortunately there are very effective medications for nausea now. I had my head shaved after my hair started falling out (you will know when it is time…) and had bought a wig but frankly, I found it uncomfortable to wear. There is definitely an advantage to being a knitter and I indulged in cashmere and merino yarn and made myself hats. I live in the Chicago area and found that the Arctic Anenome Hat by Cat Bordhi does a great job at keeping a bald head warm and is really fun to wear.

    I received three rounds of R-CHOP and it wasn’t as bad as I thought it would be.The actual process is painless, especially if you have a port. The “R” (Rituxan) infusion is usually preceded by an infusion of IV Benadryl which might make you pretty sleepy so wear comfy clothes and bring a favorite blanket or afghan. Be prepared to spend the entire day at the infusion center.
    I also found this book to be very helpful: The Chemotherapy Survival Guide by Judith McKay and Tamera Schacher. The authors are oncology nurses. I’d be happy to send you my copy if you wish.
    It’s always nice to get other opinions. I see a specialist at the University of Chicago who works with my local oncologist and was able to obtain expertise but receive the actual treatment locally.
    Good luck . Knitting definitely helped me get through the ordeal! I will keep you in my prayers.

    • Thank you SO MUCH for your insight, it is worth gold!

      Your words make me less afraid for my first date with Chemo on Monday. My big fear is that my port won’t work (they tried it on Tuesday and it wasn’t working…) I’m such a weird as far as bruising, etc., goes that I’m terrified there’s some huge bruise-like thing that will keep the needle from getting into the membrane of the port. I’m not usually a worrier, but the nurse who tried to insert the port needle on Tuesday was VERY forceful, and it was QUITE painful.

      My doctor prescribed a lydicane cream for future port uses, so we’ll see how that goes!

  12. Being heard is a wonderful thing! I will send you good thoughts for things to go smoothly. (And I may have to order more yarn; I haven’t knit with the first skein I ordered yet, but it’s so nice, I know I’ll want more!)

  13. My experience with Mayo (in Jacksonville, FL) is that they do not “file” insurance. They will provide you with everything you need to file for yourself. They don’t care who your insurance company is – they just don’t enter into that system at all. I’m thinking about you & keeping up with your story daily. Sending all the good vibes I can to you & Gary & to Andy & Max!!

      • It’s just crazy how hard some of these institutions work to make life hard for others! (I mean both the hospital systems & the insurance industry . . .)

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