Tuesday, December 2, 2008

Update and The Fun Never Stops

The river that is my life continues to be fraught with many big rapids.

Sunday drifted into Monday, and then to Tuesday. There was no great improvement in how I was feeling so I stuck close to home and to my bedroom. On Tuesday afternoon I wandered into another room for a change of scenery and began experiencing an unpleasant tightness and discomfort in my chest. After a round of calls to Dr. D's office, I headed to St. Jo's. Once there, I had to tell my story to the ER doc, which is becoming a problem as this story gets longer and longer. A flurry of calls between Dr. Scheinberg and me and the ER doc and Scheinberg resulted in a CT scan with contrast, something I was resistant to but ultimately relented. I am trying to be mindful of all the radiation that has bombarded my body, and besides, the contrast produces the sensation that you are wetting your pants. The ER doc's initial impression that I was suffering from pericarditis did not pan out, so I was sent home, which was good, but with my problem unresolved, which is bad.

On Wednesday, Scheinberg texted me that he and a radiologist were looking at my scan from the previous evening. And then nothing. No word from Scheinberg on the results. Scheinberg and I did not communicate again until Sunday night, so that left 4 days for me to be concerned. "Be concerned" is a tactful way of describing what I was feeling. Nevertheless, I enjoyed a delicious Thanksgiving lunch with my family, and a spur of the moment jaunt to a North Georgia cabin with John, Brent and his friend, again, for a change of scenery. Despite the rain that never let up, we had fun.

Sunday night Scheinberg and I reconnected and again, he would not reveal what was in the scan. He indicated that we would talk the next morning. "Be concerned" blossomed into something more alarming. Monday morning did not bring the reassurance I was desperately seeking; instead, Scheinberg asked me to come to his office asap. Once there, we talked about the difference between the scan that sent me to the hospital in October, and last week's scan. Apparently, whatever was detected in my right lung in October has gotten worse, and he had already scheduled a bronchoscopy for that afternoon. No discussion. No choices. I was free to do whatever I wanted except eat and drink until I reported to the hospital at 1:30 pm.

Endoscopic procedure No. 3. Four tries to get the IV in. Trouble coming out of the sedative, and violent coughing. The last nurse and I closed the place down at 6:30 and I left with an oxygen tank and more waiting for me when I got home. I was exhausted from the trauma of the day and I slept fine, covered in dachshund. It seemed like there were 10 in the bed last night, instead of 4.

Today I am finding that I need the oxygen to move around and if I am going to talk for more than a few minutes. Scheinberg is still claiming that whatever is in my right lung resembles an infectious disease, such as tuberculosis. That still seems unlikely to me but not to him so he repeated the TB test. Now I wait, patiently or not, for the results of the cultures.

I am too consumed with the task of putting one foot in front of the other to do anything more than a general thankful for all the support I have received from friends, family, colleagues and the medical community. I know you are there for me.

Love to all.

18 comments:

Susan said...

Elyse,
I have been checking this blog constantly, waiting for your update. I was about to call you and decided to check one more time. Now I find this new entry. Oh, my dear friend this is NOT what we want for you. If only there were such a thing as a magic wand... Elyse, I am not surprised that you feel exhausted. You are working so hard to get well and now, this. But, you are NOT alone. We are ALL here for you. Feel our embrace, our prayers, and our love and try to gain strength! My hope is that your river is blessed with peace and calm SOON!
Hugs, Susan

Anonymous said...

Elyse, I am so sorry you are having to go through all of this. It just doesn't seem fair. But as Susan said, we are all here for you, and all with you, cheering you on, feeding you, giving you the strength to "keep on keeping on". Just know how much you are being thought of and how many people love you....and keep your fighting spirit. Hang in there.
Love,
Ann

Terri said...

We love you and are here if you need anything. We are hosting the neighborhood holiday party this year and hope you will feel like coming. You are in our thoughts and prayers.
Terri & Barry

Anonymous said...

I too check your blog every day to find out how you are and to connect in a small way with your struggle. It really is not fair that you are being tested in this way. I wish there was something that I could do to make it better.
By the time I got to it, the first open dinner slot I could do is mid-January. For now, just know that I think about lots.
Love,
Janis

Anonymous said...

This sucks. Where is the light at the end of the tunnel? I call upon all who are following your struggle whom are sending love and prayers your way to please take some time to visualize your healing...let's all visualize this lung in need of healing and send the breath of life and health to you to take over the space that something unhealthy is taking up. I , too, have been checking the blog daily (multiple times) and fearing that things were not going well. Indeed our fears were correct. Stay focused on the things you can control -- rest, letting the good people in your life help you and your family, and gain strength from them and from the healthy, nutritious food necessary to keep your spirits up and your healing on track (yes, that includes milkshakes). You must maintain some strength to be a pain in the neck (among other places) to your doctors for without it they will not stay on top of things. Above all, in my personal experience, wiener dogs are excellent for healing == snuggle close. Love, Cynthia

Anonymous said...

Elyse...

I've always thought how cool it would be to kyak one of the rivers in North Georgia. When Steve and I ran into John the other day the subject came up...I told John I'd do it in a heart beat if I was assured of a smooth ride...he said "Elyse and I have navigated through some pretty bumpy stuff"

Interesting conversation considering today's blog. Yes...you are literally navigating through some pretty bumpy stuff. But you can do this. The internal courage you possess --that allows you to take a seat in a kyak headed straight for a white water rapid -- is the same courage that will carry you through whatever lies ahead. And when you get too tired we are here to carry you! Let our thoughts, prayers and love carry you!

* Psalms 29:11 NIV

The LORD gives strength to his people; the LORD blesses his people with peace.

Your adventurous spirit has always inspired me...love you, Deb

Steve Beagle said...

Ali-You have implored me all along to use comedy to take your thoughts away from the obvious. I have tried my best... when I saw you Sat. with John and Brent to kindly pick up Zack, I could tell there was much more on your mind then just a drive to the mtns. Now I understand. I still believe and pray your strength will overcome. All of us Beagles will pray and visualize your recovery. I can not imagine how scary this has all become but I can imagine how much love you have around you every second because I have witnessed first hand the love and strength you have shown all of us.. I sit here with tears in my eyes asking G-d why he has to put such a kindred beautiful soul through such suffering.. I hope his vision becomes apparent during your healing because I too right now want answers and your recovery with no more pain.. LH&P Steve and Family...

Wendy L said...

Dear Elyse,

Do know that my prayers for healing and my heart are with you..particularly reading on your blog today of your newest obstacle. It was such a gift for me to spend a little time with you on Sunday--and to meet John and Brent and your dachsund family...Elyse, your courage and your strength --even -- and perhaps particularly when -- all you can think about is putting one foot in front of the other --are an inspiration..

Love, Wendy

Anonymous said...

Reading your blog has left me wondering how to help;your pain and illness is palpable but hope and prayers seem so little a response. I am left somewhat ashamed of those in my profession who lack kindness, and a meaningful and caring response. Making you wait for information is unforgivable. You are in my thoughts.

davedoc

Burton said...

Damn! Let me tell you from personal experience, not having pericarditis is good news. And, with Lake Lanier still down 20 feet, rain in North Georgia is good news. But I can only do so much, Elyse. You've got to work with me. I look forward to your next truly good news post coming soon. Until then, you remain in my constant thoughts and prayers.

Anonymous said...

Elyse,

My arms are wide open for you. And know I would take away every ounce of your pain if I could. I am here for you and will see you in a few weeks.

Much love,
Couz M

Bruce M. said...

The bigger the rapid the more elation when you tackle it. Keep paddling girl.

Anonymous said...

Elyse: If anyone I know, or have ever known, can tackle this challenge, it's you. I hope you take this the right way, but if this had been some kind of game show challenge and we had to put up the person most likely to beat it, you are who I would elect to represent my team. We miss you in the Alliance, and I look forward to my Project Co-Manager coming back to help me kick some butt.

Hang in there. And we'll keep the positive, healing energy flowing your way. (I'll be at your office, today, meeting with Amy. Since proximity might help, I'll be sure to send a little extra healing energy your way while I'm there. Maybe I'll go sit in your office and meditate on you and your healing!) --mb

Lenore and Scott said...

wow...you KNOW I check your blog MANY times a day (sometimes I feel like a stalker), but lately I have been so busy at work and the postings were few so I just figured you were steadily continuing the recovery process (notice I stayed away from the word ASSumed). Scott alerted me to your latest posting and I am tearful. I am so sad and distressed this "thing" is not resolving. I agree that TB sounds a bit odd and heaven knows you don't want to be back in the isolation box at St. Joe. We all feel rather helpless but if every posting gives you an ounce more of strength and light, then I'll keep 'em coming. Sometimes I feel it's cliche to say "you are always in my thoughts" but it is so true...you are in my thoughts constantly. I wish you lived next door so I could annoy you (er, I mean comfort you) back to good health. Please, please, please, please, please, please, please, please, please, please, please feel better soon. You know I give good hugs, so feel this very gentle one.

eeplan said...

Elyse:

I truly don't know where you get the strength to share all of this yucky news with us (and manage to keep your sense of humor!), but I sure appreciate that you do. Dig as deep as you can into that reservoir of strength so that it can help you through this rough spot. I think of you all the time and am sending prayers your way.

much love - (the other) Elise

Anonymous said...

Dear Elyse,
When I even think about complaining now-I think about my good friend Elyse and what she must be feeling. You are still my hero. I know this hurdle will be overcome but I'm so sad that you are hurdling it and meeting so many more obsticles. I do know someday you'll look back on all this with a certain smile on your face knowing you beat it. We are betting on you.
Keep smiling and keep remembering all of your friends that love you!
XXXOOO
Roberto

Bridgette said...

Elyse,
This is not the news I was hoping to hear but never the less I love you and I'm sorry things are so hard for you right now. My heart aches for you, John and Brent and I miss you. I will see you soon I promise. It must have been an ultimate act of patience to wait for that meeting with Dr. S. Hang in there and no that I'm praying for you and love you! Chase is recovering well at home. Big hug! bridgette

Forrest said...

Elyse,

Just read the latest and am sorry to hear this but all you can do is march on, which I know you will. I know you must be so exhausted from this ordeal. It comes through even in your writing and wish there was more someone could do. You are a fighter though and I pray the right lung issue will resolve itself.