Update: My Mom Needs Help…Now!

Mom at Swedish Medical Center ER

As you can see, my mom’s neck and face are tremendously swollen. Given her history with Superior Vena Cava Syndrome and the two stents recently inserted to fix a blockage that caused these very symptoms, I will never understand why the doctor at Mayo’s ER in Phoenix did an ultrasound – not a CT scan – and sent her on her merry way. As the ER docs in Denver discovered – a CT said a lot. But, geez, I digress.

It’s been a long day, but there are a few developments to report. A few. Mom went to a satellite emergency room of the Swedish Medical Center in Denver this afternoon. Here they were able to determine there is no blood clot in her leg. Good news.

They did a chest X-ray and found nothing. They had to wait until my mom’s kidney levels were ok to do a CT scan. Once she was properly hydrated, they performed the CT scan and found nothing irregular. Good…and bad. So, what the hell is the problem? We don’t yet know, but at least these docs aren’t shoving her out the door and saying all is fine and dandy.

Doc at Swedish Medical Center ER

One of the Denver ER doctors said he suspected an accumulation of blood vessels in her neck is causing the problem. Yes, the right side of the neck where a malignant tumor was once pushing against a blood clot, resulting in the stent procedure. My mom just completed radiation that shrunk that tumor, but in her most recent scheduled follow-up (that showed a progression of the cancer in her lung and determination that chemo was back in the cards) my mom said her oncologist mentioned seeing something else suspicious next to that shrunken tumor in her neck. Another lymph node??? I don’t have all the details (which drives me nuts), but her doc advised her to see her radiation oncologist to further discuss once he returned from the ASCO convention. I can’t help but wonder if this “thing” is now the culprit.

Swedish Medical Center in Denver

Good news is we now have next steps. Right now my mom is on her way to being admitted into Swedish Medical Center where a thoracic specialist will take a look at her in the morning. She feels so much safer, even though she is away from home. We all do.

My mom doesn’t yet know of the outpouring of love on Facebook, emails, phone calls, texts she has received from all of YOU. I’m hoping she will be able to see for herself tomorrow when things calm down a bit. You are all absolutely incredible. She tells me time and time again how much the support of the lung cancer community, friends, family and even complete strangers, means to her. It’s truly immeasurable. We are beyond blessed.

Heading to Swedish Hospital Medical Center

Through the WTF campaign, my mom and I are on a mission to make a difference. Chronicling her every up and down, twist and turn so publicly isn’t always the easiest thing to do, but, if it can bring about true change in the fight against lung cancer, we don’t bat an eye.

Eye on the prize.

Eye on the mission.

We must never lose sight…and we won’t.

WE promise.

Today’s earlier post below. ___________________________________________________________________

All I can do is write. Whatever comes to mind. The swelling has returned to my mom’s neck and face. She feels like her whole body is shutting down. She feels like she will black out if she stands up. Horribly scary deja vu.

When this happened last time, my mom ultimately had to get two stents put in, as her subclavian veins were nearly 100% blocked (Superior Vena Cava Syndrome).

Diagram Dr. Fitch Drew for us on the hospital whiteboard

A tumor in her neck was pushing against a blood clot. Before any of this could take place, my mom had to demand that one of her doctors see her in person and quit brushing her off. It was absolutely insane. Once she walked into the lobby of this doctor’s office, he immediately had her admitted to Mayo in Phoenix.

Wednesday night, my mom went to the ER. They did an EKG and ultrasound of her neck and chest. All clear. She mentioned she had been having pain in her right leg. They dismissed it. They sent her home with a diagnosis of wry neck. Whatever.

Thursday, she and her husband, Bob, flew to Denver to spend a few days with Bob’s daughter. My mom was feeling a little bit better Thursday morning, so decided to go. After all, Denver was a short trip – and a pit stop – before coming to Omaha, where we live.

My mom was not going to miss this trip. She was hell-bent on seeing her granddaughters….and her own mom, who lives in Fairbury, Nebraska. So, tomorrow, she’s technically scheduled to fly here. That isn’t going to happen. Nope. Nada. She is on her way to an ER in Denver right now. The swelling has progressed, she feels worse and is beyond scared.

Mom and her Mom (Grandma Yvonne)

 

She called her Mayo doctors yesterday to explain that her symptoms were worsening and report what the ER docs discovered on Wednesday. (Clear ultrasound and wry neck). The physician’s assistant said things must be fine if the ultrasound was clear and that problems could be stemming from the change in altitude. So, she was told to, “Go on and enjoy her trip.”

Nope. Nada. Something is very wrong here. First of all, these symptoms started Wednesday. In my opinion, there has to be another blood clot or something – most likely in her leg. I called her Mayo team earlier today and spoke with a resident (it’s Saturday). I asked if someone from her Mayo team could talk to the ER team in Denver so they could work together – a coordinated effort. Mayo knows the history and could perhaps guide the ER team. The response: “Well, the team in Denver is more than welcome to give us a call to see what they find out in their work-up.” She said it would be hard for the Denver folks to be able to compare the difference in ultrasound images from Phoenix. No duh.

I said, since the scan was clear, perhaps that’s not the issue. What about her leg? Isn’t it possible she has a clot in her leg with the symptoms she is having? Either way, something is wrong and someone needs to figure it out. Should she fly home to be evaluated or is that too risky? I HAD TO DRIVE ALL OF THESE QUESTIONS and pull teeth to get answers. The resident agreed that yes, my mom should be evaluated and it would be safer in Denver, as flying with a blood clot is not advised.

Three generations of sass!

So, now my mom and Bob have to go through this entire process over again – explain everything again to another ER team, probably 8 hours after they actually step into the entrance. And, that team is “welcome” to call the Mayo team. Seriously, where is the integration? Why can’t the ER pull up my mom’s info and easily talk to someone from the Mayo team anyway? Why do I have to suggest and coordinate such an effort? Why does this have to be so effing hard?

My mom is heart-broken on many levels. This was her one little “window” to make a trip back. Even though she was feeling horrible from the radiation, she would do anything to step foot in Nebraska. Then, another set-back. Two weeks ago, she found out the cancer has progressed and she will have to go back on chemo and possibly radiation for 4-6 months.

We recently had to put my grandma (my mom’s mom) into a nursing home and my mom wasn’t able to come back to Nebraska to help, as she was undergoing radiation and didn’t have the strength and/or energy to make it back. She feels tremendous guilt for not helping with my grandma’s life transition and, frankly, she misses her mom. Stage IV inoperable lung cancer (no, she never smoked) is now calling the shots full-time.

Mom headed for insertion of stents

My grandma has dementia. I know my mom feels like this trip is probably the last one…the last time she will see her mom. Now, this trip isn’t going to happen…or at least it will be delayed. That’s what I’m praying for right now.

 

I feel so damn helpless living several states away. I hate it. However, if she will be in Denver for some time, that’s where I will be..pronto!

My mom honestly doesn’t complain that much about having lung cancer…at least not as much as I would, I’m sure. However, today she said she just can’t figure out why she is being “punished” in this way. All she wanted to do was come back for a few days to see her family. Why did this swelling issue have to happen the night before? Why?

Obviously, not a good day

I don’t know. What I do know is that I am so tired of watching my mom suffer so much. She’s one hell of a fighter, but she is worn down. She is beyond tired. I’m not sure she can even handle another round of chemo. She has surprised me in the past. I have no doubt she will again.

 

It’s hard enough to navigate the evils of cancer. Having to also navigate the healthcare system is a double-whammy. Damn it.

As I have said countless times, be your own advocate. You MUST. You know your body better than anyone else. If something doesn’t feel right, most likely, there’s something wrong. Get help. Don’t stop until you do.

Updates to come.

  • http://twitter.com/bobledrew Bob LeDrew

    Heartbreaking. Frustrating. 

  • Claire Celsi

    I hate to make this blanket statement…but doctors are the worst kind of pricks in the world. I f-ing hate ‘em all. They act so damn pompous and inconvenienced to take a fresh look at a situation. So sorry for your hassles and tell your mom to hang in there. I hope she feels better soon.

  • Lynda Koning

    I’m so sorry your mom had this bump in the road. I hope she only has to postpone her trip. I hear Denver has excellent medical care, so hopefully the doctors are doing all they can for her. It sucks that the medical professionals at the Mayo Clinic aren’t being any help at all.

  • anna narvaes

    Jenn – get her to the University of Colorado Hospital – Ask for Dr. Camidge … I can’t find a private email for you but I’ll look for his contact info and try and get it to you.

    Anna
     

  • Amy

    My thoughts and prayers are with you right now Jen! I am just sick about this. I HATE lung cancer! Your mom is so strong and brave, but I know how tiring it can be fighting this thing. More than anything, I want for her to get back to Nebraska to be able to see  her Mom again. That just breaks my heart! As I write this I pray for peace to envelop her and get her through this latest setback so that she can journey on to Nebraska.

  • Mary

    My experience when my late husband was sick was that doctors do not and will not communicate with each other.  YOU have to FIGHT them tooth and nail – it’s ridiculous!!!  So it appears the fight is on!  Hang tough girl – you can do it.
    Mary

  • Diane

    dammit. isn’t it as easy as..umm..COMPUTER files?? surely Mayo is “paperless” (even though they have written back-up)..coupla clicks and her history is in Denver..why the big deal??? CRAZY. i’m confused by this being any problem at all. since they seem to be taking it seriously (not brushing her off) in Denver..think i would stay there. i get SO freakin’ ANGRY when ANY doctor acts like you don’t know your OWN body…and for us?? we’re hyper-alert…PLUS sick to death of doctors…so when we say something is not right..it’s NOT. grrrrrrrrrrrr. i was so happy she was getting to make this trip..i’m prating and praying that she will. breaks my heart too that she thinks she’s being punished. GOD i hate cancer. i love y’all…try to hang in..i know it’s hard…so freakin’ unfair. xoxoxoxoxoxoxoxo

  • Jo Ann

    I can’t believe in this day and age that drs. still don’t work cooperatively with other drs.  It all comes down to billing, money, not stepping on toes – when will patients be the priority.  What you are going through is what I hear from so many – we have to be advocates for our own health and all the time it is like pulling teeth.  Jenn, I feel for you deeply and I know the fear you and your mom are feeling.  All I can say is you are doing everything you can, and have to do.  My strenghth to you both.  Hugs to you both, J

  • Kimberly Lester

    So disappointed this visit isn’t working out for you – I know both you and your mom were really looking forward to it. I’ll be praying for you and your mom (and for wisdom for the doctors).

  • Steff_1959

    Please tell your Mom her inspire friends are praying for her and to stay strong!!

  • Linno 1111

    Jennifer, this is beyond distressing. My thoughts are with you and Leslie and your family. Let’s hope for a quick resolution and relief (as you know, oxymorons in an emergency room). Thinking of you all, Linnea

  • Sallyness

    We’re all pulling for Les.  Your poor mom has just had too much to battle.  Not fair!  Damn lung cancer and damn the ineffective medical community that puts you through this.  My thoughts and prayers are with you all.  I send big hugs to Les and to you.  I sincerely hope that you are able to write something more positive later.

  • Specialkkim

    I am so very sorry!! Your Mom is awesome!!  We became friends here on facebook.  I also have lung cancer 3a or 3b adenocarcinoma. Leslie is an inspiration for me..she has been through so much and is such a fighter ..she has been so kind to me and we have shared some stories. I was so saddened when she got her scan results , but I know if anyone can fight this she can. Jennifer my thoughts and prayers are with you all and please tell your Mom I am thinking of her and wishing her well..Why oh why did this monster disease have to ruin her trip!! I’m sorry. Kim

  • Dharris59

    Your mom is in my prayers, I think so much of her and I am so saddened by this latest set back.
    Tell her that her friends here at Inspire are thinking of her and praying for her.
    May God be with you, her and her family and give to her what is needed to see her through this.

  • Mary

    Jen, I’m so sorry this is happening.  When I was going through treatments, I had a nurse navigator, I had a cell# for her, I was able to call her on a weekend, even though a Dr. was on call.  She suggested that I needed to talk to the Dr, and put my call through to the answering service, then I got a call from the Oncologist on call that weekend.  Does your Mom’s cancer center have such a person?  A Nurse navigator?  Anyone that you can call?  If you are not happy with your Moms care, and your are on her contact list, make your voice be heard, they’ll get over it.  My thoughts are with your entire family.  I hope they give your Mom some relief asap!
     

  • Annika

    I am so sorry your mom is going through this!
    I hope and pray that she will be on the mend soon.
    She is lucky to have you as a daughter, I know she is very proud of you and rightfully so.
    You are doing a great job for  us lung cancer survivors.
    Please let her know Annika from Inspire sends her gentle hugs,love and prayers.

    Annika

  • http://spinsucks.com Gini Dietrich

    Sending you lots of love!

  • Susankwilliams

    My thoughts and prayers are with you Les.  I am so sorry that you have to go through this difficult time. My heart goes out to you friend. May the love of  God bring you comfort, healing and peace. Love and hugs,  Sue Williams

  • Schukei

    Whatever happened to this modern technology that is supposed to make transferring medical records a simple procedure of a “click”?  SERIOUSLY!!!   I can feel your angst and I’m extremely disappointed for you that a facility with the reputation of Mayo Clinic would treat you in such  a manner.  You would expect so much better!