imageThis is only my second time guest blogging for Barb, so please forgive me if it doesn’t go as planned:

Barb has had quite a dreadful few weeks, and it seems as if she has been tumbling down a rabbit hole that has very little to do with cancer. When Alice fell down the rabbit hole, she encountered many strange and unusual things. Nothing was quite as it seemed to be.

As you probably remember, back in February (oh, so long ago) Barb had a catheter port surgically  implanted so she could avoid the constant IVs necessary for her chemo treatments. All was well with the world until the pain and redness came and the ER visit the night before Easter. “Looks infected but no fever, take some keflex, go home.” Little did we know that when Barb next headed to Cancer House, she would follow Alice down the rabbit hole into her own version of Wonderland.

Tuesday was the next chemo day and I accompanied Barb. The good news: tumor markers were now in the “normal” range (but, you may recall, this has very little to do with cancer). The access port, Dr. Rachel said, must come out. She had called the Infectious Disease people who advised it be removed due to infection. They will schedule a time this week (oh, goody, another road trip!). We go to chemo and right afterwards, we are told that they can remove the port today (hooray?). We have to go across the bridge to “the Brigham,” and down to interventional radiology, lowest level in the building – L2.

And there we meet Frick, a grizzled physician’s assistant, and his attending sidekick, Dr. Frack, who, upon further exploration, determine that, heck no, this doesn’t have to come out. “It’s probably just on the surface. Take a little Keflex and a card with our emergency numbers and let’s see what happens.” All was well in the world. Barb would rest on Wednesday and take a shot at going to work on Thursday.

Except Wednesday night Barb decides to have a little something to eat (10 pounds lighter than 2 weeks ago,the first real meal in about four days). Only to have it all come back up, along with the Keflex, the other little pills and god knows what else, right before bed. Thursday she awakens feeling terrible, but says she must go to work… Until a colleague finds Bridget and tells her that mom’s throwing up, has a fever, chills and is in the nurse’s office, lying down. Bridget brings her home and calls Dr. Rachel, who tells her to head to the ER where I will meet them. But alas, there is no infection in the blood stream, the port looks okay, but she has a fever and feels like shit…what to do? Let’s keep her overnight. Let’s put her in observation and we’ll observe. And so they do.

And the following day (where are we now, Friday, I think?), after many conversations, a decision is made to remove the port. We head from observation, down to interventional radiology (who makes up these names?) for the removal. No Frick, no Frack, no doctor that I saw, just a lot of people with netted heads poking into the many bays up and down the ward. As Barb recites for the millionth time her name and date of birth, they discard the Blanket to the family waiting area to wonder what comes next.

Her next stop is the Women’s Oncology unit where she is admitted and they can pay more attention to the fact that she is an oncology patient (really?). And, by the way, it is right down the hall from observation. On Friday night, despite multiple medications, Barb spiked a fever of 102.8 degrees. She tried to eat a little earlier and what little went down all came back up. Head scratching ensued and more medicines were ordered. IV medicines.

But of course, there is no port to attach the IV meds, so we need to go back to the right arm (the left one can’t be used). Not once, not twice, not….well, it’s been quite a few times now. The veins are getting brittle, one has failed and her arm is looking like No Man’s Land from WWI. Bags of fluid hang from every metal hook: Vancomycin (replacing Keflex), Zofran (for nausea), potassium, Toradol (for pain), dilaudid, and lots and lots of saline solution. I need a boat just to get to her bed… Then there is some orange stuff for thrush, a white bottle for dry mouth, and huge purple capsules for more potassium (because the IV potassium Infiltrated her IV and made her  veins hurt – assuming there are any left), and ointment for her rash.

Luckily for Barb, she doesn’t have to worry much about not being able to eat because the scrambled eggs had to be removed from the plate with a serrated blade. The English muffin egg sandwich must have come from a Barbie’s First Kitchen set. It could not be real. If they had an “Easily Digestible” column on the nicely designed menu nothing would be listed. BAD.

On Saturday, the nurse informs Barb that she needs to change her dressing. Of course, this is no ordinary dressing. There are no stitches. There is “packing” that is placed directly and deeply into the incision. And a change of dressing means that the “packing” has to come out. Using tweezers, the nurse slowly pulled on the packing, unveiling its folded layers one at a time, until she had about eight inches of wet, oozing packing material between the tweezers and the wound. It looked like a magic trick. And then she got new packing material and began layering it back into the open wound. All this without any offering any medication. If Barb was grey before, she had gone white by now. Later they put a notice on Barb’s white board to “give Dilaudid before changing dressing.” This will be done on a daily basis until the wound heals from within. VNA nurses will do this when (if) we get home. (Will they bring the Dilaudid? Will they bring some extra for me?).

And finally, yesterday, Sunday, things finally began looking up (from the rabbit hole?). Barb slept until early afternoon and actually ate some food (from Au Bon Pain). Her coloring was returning. She had a little pep. And I knew things were better when the infectious disease doctors came. A fellow and an attending. The fellow got Barb’s story and then repeated it to the attending, who then asked if he could, “take a peek.” As he gently reached in to remove the tape covering the port’s incision site, Barb screamed out, “Arrghh,” and the attending pulled away startled. Barb laughed out loud. “I gotcha!” The fellow paused, then laughed. The attending paused, then laughed as well, but added that she might have been better off waiting until he had finished his inspection. He might not be so careful now. We all laughed. When he was done he thanked her for giving him his sense of humor back. Apparently it had been lost.

Today is Monday. More visits from oncologists, specialists, a nutritionist, palliative care. She is worn out. Maybe tomorrow  she’ll come out of the rabbit hole…..Thank  god for the coconuts and all their help.

We won’t be going to the MBC conference in Philadelphia this weekend after all. She is pretty bummed about that but relieved too.

Love,

Tim/Blanket
Song of the day: “White Rabbit” Jefferson Airplane

 

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Written by barbigelow

Wife, mother, school psychologist, cat lover

12 comments

  1. Tim, Barbara & Coconuts,

    What festival of suck. Thank you for keeping everyone informed–we have all been very concerned. So relieved Barbara is starting to feel better. Praying for you all.

    XO,
    Jen

    Liked by 1 person

  2. Thanks for the blow by blow…we are feeling the blows along with you. So upsetting to hear all the different levels of pain and discomfort that you’re going through. Just glad you are getting good care and surrounded with love. Hoping for a better day☀️☃☀️

    Liked by 1 person

  3. What a cluster fuck! So NOT fair! I know, life isn’t fair, but you all have had more than enough. 😡
    So happy Barb is finally feeling better, and hopefully gets to come home this week.
    Meanwhile, we had a freaking snow storm yesterday in lovely GR. Michigan is a never-ending plethora of changing weather. Hoping for spring sometime in May 😜
    Hope to hear good news from you all soon!
    🙏😍❤️💚💖💜

    Like

  4. My deep wishes for a steady and safe route to stability again. Those interventions were a nightmare! Hoping you all can keep those impersonal ghouls at bay, and can draw warm hearted, sensible, aware helpers to Barb’s side. Go Barb, go Blanket, go Coconuts!!! Hugs from Maine.xo

    Liked by 1 person

  5. Very nicely written. Until the end I thought it was one of the girls inheriting Barbara’s incredible style of writing. Must be a family thing. Really tough stuff for all of you. Try keeping some of that family humor during these trying times. Good thoughts as always.

    Liked by 1 person

  6. my love and warm hugs are with all the bigelows. Yes humor is a gift and one of the great things about you and Barb….. Well a lot Barb, great job channeling her wit!!

    Liked by 1 person

  7. I am so, so sorry the two of you have had to endure such a nightmarish experience. You absolutely don’t deserve this. Very glad you are starting to feel a bit better, Barb. We’re keeping you in our thoughts, as always.
    Love, Betsy

    Liked by 1 person

  8. Thank u for continuing to share at this difficult time…the reality, the honesty, and the moments of humor ..,you articulate them all in ways that touch us to the core….and we need to be touched ….by your courage and strength…and determination…

    Sent from my iPhone

    >

    Liked by 1 person

  9. Dear Tim & Barb,

    So sorry that Barb is going through this horrid ordeal. Jeff & I were actually up very early this morning before dawn and saw that you, Mr. Tim were sending the Blog out at 3:00 a.m….. must be a very lonely time.. Jeff and I are sending you both lots of good thoughts & lots of love. So many people care so deeply about you both & your beautiful daughters. We’re there for you & in your corner…..always.

    Love,

    Laura & Jeff

    Like

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