Hello

I may be battered & bruised, but I am limping along. I have never, ever experienced such horrendous pain in my life. It feels as if there is barbed wire strung throughout my chest holding it together, There are white-hot searing stabbing pains that I always feel. It's as if somone has a white-hot poker stabbing my chest while someone else is stabbing the scapula with a bayonet. The chest tube hurts. My abdomen is totally painful & bruised from the Heparin shots. My forearms from my wrists to below the elbows are pure black & blue from arterial lines. When I do my spirometry & have to cough, the pain is white hot & intense. I always carry a little pillow to protect my side from more pain when coughing, etc. My chest tube is not attached to a pleura-vac like in the hospital. It is hooked to a Heimlich one way valve which Alan had to rig up a collection receptacle. Let's just say it's not a pretty sight. Because of my difficult intubation and distorted airway (must have been the radiation), I had a lot of swelling and I woke up 2 days later with an endotube and nasogastric tube in my mouth. They wanted me awake prior to extubation. Anyone out there ever try that before? That was NOT fun. So, I got extubated Friday afternoon and my surgery was Wednesday morning. That was confusing to me when Kara told me it was Friday. ICU is a distant memory of 6 days of excellent care. If it weren't for my wonderful family, I would never be here. They refused to let me quit, sat there and watched me on that ventilator for days and never left my side. Alan broke the laws of the ICU and spent the night in my room. I am still trying to get pain control-the narcotics are intolerable to me. I've been vomiting every other day. Eating is a chore, walking is tough, everything is exhausting. I know that eventually this will all pass and this will all be worth it. I thank everyone for your support and prayers, sorry I have been unavailable to everyone, but talking on the phone & visiting are not options right now. Dr. Canby, thank you for the gorgeous arrangement-we loved it! I have to gather more strength and watch those looks of worry leave the faces of my beautiful family. Just to be around & have them be here helping me & caring for me makes it all worth it. Time to go rest, readjust my pillows, take some pain pills, & crank up the heating pad. Love, Linda

Saturday ~ from Kara

Hello everyone. Mom finally came home from the hospital late on Wednesday. She has been in lots of pain ever since. She is so uncomfortable, and her pain medication is still making her sick. This morning, she woke up horribly ill and was vomiting all morning. Her visiting nurse came and called her doctor, who told her to go straight to the hospital. She spent the day in the ER at Northside, getting fluids (she was dehydrated), morphine, drugs for nausea, a chest Xray, bloodwork, etc. The fluids helped to get her back under control. She will now have to take a half-dose of her pain medication, and anti-nausea medication around the clock, to help prevent her from getting so sick. She is now back home and trying to rest. We keep trying to reassure her that she won't always feel like this. But we were all warned that the recovery for this operation is long and difficult. Hopefully she will begin to improve a little in time.

Still in Hospital

Well, I'm not sure if she will be going home today after all. After she went for her chest Xrays, my mom got very sick. They have her back in her room and are trying some different medications. So as of Wednesday evening, she is still in the hospital. We are not sure when she will be discharged. More updates to follow.

Coming Home

Today's the day! Mom will be coming home from the hospital later today. She will, however, still have the chest tube in until December. Concerns about an air leak made her doctor reluctant to remove the tube. So, she will be getting home health care to assist her with maintenance of the chest tube/bandages and dressings, etc. She has an appointment to go back to her surgeon on December 9, when hopefully the chest tube will be removed and she will be free! :)

Yesterday she was moved out of Intensive Care and into a regular room. What a huge difference in the level of care. Thank goodness my dad is there to make sure she is getting her pain meds, and getting up and taking walks. They are supposed to get her up and moving and walking several times a day. Her room is loud and noisy and I think she will have an easier time recovering once she is home. More updates later.

Monday ~ from Kara

Hello everyone. Just a quick update of what went on over the weekend and today. As of tonight, mom is still in the ICU, where they are taking good care of her and monitoring her closely. They will be moving her to a regular room tomorrow at some point. She had one of her chest tubes removed on Sunday. There was still too much drainage from the other one to be removed today, so the plan is to remove it tomorrow as well. That chest tube also showed evidence of an air leak, but her doctor felt that it was leaking from outside of the lung, so they are watching that closely. The weekend brought more pain and sickness. She is pretty miserable and in a lot of pain. The narcotics they were giving her started to make her very sick again, so they are really trying to hold off on those. She can't get comfortable and she is feeling really overwhelmed by this whole ordeal. She couldn't eat much of anything today. We're trying to make her eat, which is not fun. She is doing well moving around, though, and took 3 laps around the nurses station, 3 times today. She was exhausted and hopefully will get some sleep tonight. I'll update more tomorrow.

Friday ~ from Kara

Well, she's off the ventilator! However, the doctor was late in getting to the hospital. He was supposed to arrive at 10:30 and didn't want her extubated until he was there. So, the nurses cut back the Diprivan and woke her up; she had to be fully awake for them to remove the tube. But because he didn't arrive till 1, my poor mom was completely awake for 2 and a half hours with a tube down her throat on the vent. She was extremely mad. Extubation went well, although now she can't talk because she has no voice. Now comes the worst part -- pain. She is in such agony. She hurts all over her left side. She has the incision, the 2 chest tubes, 2 cut ribs and shoulder pain from being positioned for 3 hours on the operating table. Not to mention how her insides hurt from the surgery itself. She has been coughing, which she needs to do to bring up everything in her lungs, but it is like torture for her. There were three of us helping her cough, one supporting her head and back and propping her up in bed, one holding tight to her side and one applying pressure to her back. This was the only way she could tolerate it. She was also dizzy and extremely nauseated. Her pain medication was causing this, so they slowed it down, which helped the nausea but made the pain worse. They got her out of bed and sitting in a recliner for 2.5 hours, and she stood on her own to get back into bed after that. Overall, she is doing well. The doctors are happy with her progress thus far, even though she feels absolutely miserable. My dad is spending the night in the hospital tonight. Tomorrow they will try to get her up several times. Should be fun. I'm going to end this because I can't keep my eyes open any longer, sorry if this post doesn't make a whole lot of sense. More updates tomorrow. Good night.

Thursday ~ from Kara

Began the day at Jameson at 6 a.m. Mom is still on the ventilator, they have decided to keep her on for the remainder of the day and try to wean her off of it tomorrow. I know she cannot wait. She had periods today where she was alert. She held our hands and nodded her head. She kept pointing at something; it took a while for us to realize she was pointing at the ventilator and its tubing -- wanting it out, of course. She motioned with her hand as if she were writing, so we gave her a pen and paper. It appeared as if she started to write a "T" and then it was just scribbles after that. I'm almost positive she was trying to write "Tube." We will all be so happy when it comes out! She went back to sleeping. Then later, she woke again and this time traced out letters onto the palms of our hands with her finger. She wrote "day" on my dad's; wanting to know what day it was. She grabbed my hand and started to write "why," and pointed at -- you guessed it -- the tube. She had a small, scary coughing spell; it made her thrash around but then she settled down. The respiratory therapist and her nurse both keep assuring us that all is well. She had a visit from the pulmonologist, the general surgeon who is following up with her while she is in the hospital, the respiratory therapist (who administers breathing treatments every 6 hours and keeps a constant watch on the vent), two nurse anesthetists, and her thoracic surgeon's nurse -- and the cardiologist is also supposed to stop in to check her at some point today. I came home and now Shawn is at the hospital with my dad. Just talked to him and he said everything is okay, but her blood pressure is getting a little low - most likely from the pain medication (toradol) so they are slowing that down. Couldn't get any more info from him because somebody told him to get off his phone and he had to hang up. I will get in touch with him later. Tomorrow I will go back to spend the day at the hospital. Her doctor said she will most likely remain in ICU until Saturday, then be moved to a regular room for the remainder of her stay. More updates to follow. Please keep the prayers coming, they are helping more than you know. :)

Update from Kara

Hello everyone. Just wanted to quickly give you all an update on my mom. Her surgery went well. They had some trouble getting the tubes in because apparently her airway is very small. It added a lot of extra time onto the procedure. But Dr. Landreneau said she did well and he removed 2/3 of the lower left lobe, and dissected the mediastinum area. He also removed some of the fibrosis in her lungs (from Scleroderma, chemo and radiation). Part of the tumor was attached to her bronchus, so he cut it out and repaired the bronchus. It is amazing what they can do! Because of the extensive manipulation of her airway, she will remain on a ventilator until tomorrow at the earliest. They don't want to extubate her too soon; her airway must heal and the swelling go down. I thought the wait during surgery was hard; but walking into her room in the Critical Care Unit and seeing her lying there on a ventilator, with chest tubes, nasogastric tubes, etc., was the worst. I can't even explain what it felt like to see my mom like that. I was obsessed with watching her monitors: her O2 sat was good (99-100), heart rate steady in the 60s, respirations even, and blood pressure was good. Occasionally we think she could hear us, and knew we were there. She would turn her head, and her eyes were fluttering open. Then she would lift her hands and feet, although she is restrained so she cannot pull out any tubes. I'm sure part of her cannot wait to be free of tubes and restraints! She is heavily sedated (Diprivan). We will be going back at 6 a.m. and hopefully it won't be long before she is breathing on her own again. More updates later. Thanks for all your prayers, everyone, they are working!

Surgery tomorrow

Hi Everyone. It is hard to believe that tomorrow is the day of surgery. I got sick at work on August 3. I was diagnosed on August 4. I had more surgery in Pittsburgh in August. That was followed by scans of every part of my body. I had every test imaginable, more IV's and needlesticks than I can count (that includes arterial as well as venous.) I had breathing tests, stress tests, 2-D echos, Holter Monitor, etc. You name it, I had it done. PET scans, MRI's, CT-scans. I had cardiac consults. I had 6 1/2 weeks of combined chemo & radiation. I had diagnostic X-ray's-esophageal transit, gastric emptying studies. I ate radioactive eggs, was isolated in rooms after being injected with radioactive dyes. Yesterday, I met with yet another surgeon who will be following me along with Dr. Landreneau. There are no residents at Jameson and since Dr. L works at 4 other hospitals, this surgeon will be readily available. He was very nice-told me he was also calling in a pulmonologist. So, this blog will be carried on by Kara & Shawn while I am temporarily out of commission. Wish me luck. Tomorrow and the days to follow are going to be one BIG speed bump. I'll be back on this site postop to update you of my experiences as a patient and not the nurse. I already know I would rather totally be the nurse.  :)  Thanks for all of your support and kind words, Linda

Sunday

Alan & I took a short walk through Poland Woods today. It was beautiful out. Then we had some Chinese food, he went in & got it, (I always wait in the car), and we ate in the car. How ironic-we used to eat out 4-5 days a week. Now, we eat in the car-no other people/germs. I absolutely, positively can't get sick at this point. I guess we'll have plenty of time to eat out after this is all over. Gregg, thank you for the wonderful conversation. You made me feel soooo good. Your words were positive, encouraging, & healing. I came in the house with tears in my eyes. Of course, Alan was ready to go after whoever upset me. I told him they were happy tears that you made me feel stronger. So, you are safe, Gregg. And, I am holding you to the Thanksgiving visit. Bring your pillow so that when you faint, you have a soft landing. Just kidding!!!! My mantra: POSITIVE THOUGHTS BRING POSITIVE RESULTS!!! To all of my friends & followers, it's getting very, very close. This is what we wanted, surgery, goal met. Linda

Getting Closer

Monday, I see two Dr's., get my mediport flushed, & get Type and X-Matched for blood at Jameson. I may meet with the anesthesiologist at that time. I am hoping to see a familiar face....Dr. Dayal, maybe. Then, I guess I will be all set and "dready" (dreading it and ready), for Wednesday. They told me I am Dr. Landreneau's first case of the day, but I don't know what time he rolls in. I'll probably have to be at Jameson around 6:30 a.m.-that's just my guess. Then, all the preoperative preparation and off to surgery. I wish I could sleep through the week until it's time to go home. I shouldn't say that...that may be tempting fate. I miss Karlynn & Mackenzie, but since they received the flu vaccine, I haven't been permitted to be around them. Enjoy the weekend, Linda

PFT's & ABG'S

The arterial blood gases are done. I must say the anticipation was worse than the actual stick. Although, not exactly a pleasant experience, I'm glad it's over. The pulmonary function test results seem to be compatible with lung surgery. Now, tomorrow, more lab work, check the results and see my next game plan. This game plan has surely changed by the day. Now, I am on a diet of fish, milk, & leafy greens. It's supposed to help with the white count. Time to go drink a glass of milk. See ya', Linda

White Count

I just got a call from the oncologist and the white count they drew today went back down to 2.5. I have to get another done on Thursday and if it doesn't show an increase, I have to get some sort of  IV medication at the oncologists' to boost the count. I thought I would be done with testing this Wednesday after my pulmonary function tests and arterial blood gases. Yuck, it never ends. Still trying to get the infection settled down in my finger so there is no conflict with the surgery next Wednesday. I think the chemo suppressed things so much that the scleroderma went WILD! Another bump in the road ?!?   Linda