First week down, Eleven to go

I had my first postoperative chemo today. I have a 12 week course of chemo. Today, I just had one drug, Gemcitabine (Gemzar.) This drug causes bone marrow depression, decreasing the white blood cells, red blood cells, and platelets. Bone marrow depression usually occurs seven days after the drug is given and may increase risk of infection, fatigue, & bleeding. So, I'll be going back into my isolation mode. I was at UPMC about three hours. I had a Dr.s visit with my oncologist, blood drawn, and then the meds. I was pre-treated with Ativan & Decadron and then received the Gemzar. I also had two boluses of 0.9% saline for hydration. So, today went well. Yay! Next week, I will receive Gemzar and Cysplatin. Next weeks chemo will be six hours. Yikes! We did have another discussion on the loss of hair and now they are not sure of the outcome. Greg, thanks for bringing me the ball cap up from Texas. It may come in quite handy. I promise to wear it either way.
I always feel good immediately after chemo from all the premedication. So, I think I will go & enjoy this feeling. Happy New Year!, Linda

Christmas Comments

Monday Morning

Yesterday, I went to church for the first time since my saga began. It was so good to see everyone, the congregation clapped that I was back. That was nice. I will say those pews are awfully hard when your back & ribs (fractured) are leaning on them. Ouch! Saturday, I had an esophogram @ NSH and my friend was my X-ray tech. Thanks, Diane. I was very glad to see her. She let me sit for the test because I was feeling awfully weak. Anyway, Dr. Marina was making sure that I didn't have any esophageal strictures from the radiation. And, I didn't! Just some gas in the esophagus they feel may be surgery related. I can't figure that one out. Anyone have any ideas on that? I had been exhausted, having muscle weakness, trembling, & feeling generally terrible. I stopped the Reglan after the last dose Friday night and it has made a big difference. Also, on Saturday, Kara &  I went to a wonderful spa-like place in Columbiana called Shine. Alan saw them on the news and wrote down the information. This darling girl started taking care of chemo patients who lose their hair after her mother had breast cancer, lost her hair, & had a terrible experience at a shop on Mahoning Avenue. They had her sit on a chair in the middle of the store & try on wigs. I had a consultation in a PRIVATE cheerful room and picked out a wig. It looks so like my hair, I knew it was the one immediately. Now, if I start to lose my hair, I call her, she overnights the wig, and I go in the next day. She said she will come in on her day off  if necessary. She will shave my head :(  and cut & style the wig. Now, that is taken care of, I feel much better. Everyone who has been through this tells me to just get shaved. As traumatic as it may be, it is better than waking up with large clumps of hair on your pillow or falling out as you eat, shop, etc. Since the wig is from the Raquel Welch line, I figure some talent agent might pick me up. Hahaha!  Shawn, Jen, & Cooper are coming in from Charlotte on Tuesday night. They will have to leave for home after dinner on Christmas because of Jen's work.We're all just so happy that they'll be home for Christmas. Have a Merry Christmas, enjoy your families & GOOD HEALTH!

CHEMO ROUND II

I went to the oncologist yesterday. He was also pleased with the results of the preoperative chemo and radiation. I start my next course of chemo on December  28th. He was going to start on the 21st, but I got an extension. It will be for 12 weeks, a combination of two different drugs. They will see if I can tolerate the one, lots of nausea/vomiting associated with it. I have medications to take at home ( Emend & Compazine), and they medicate a lot prior to each treatment. This is my final stretch. I'm not looking forward to it, for sure. I hope to remain strong, eat, hydrate, & keep some strength up. Then, I will be very happy to say "Good-Bye"" to my onccologist. There is one possible side effect that I am dreading. However, I am going to be proactive and have an appt. with a specialized hairdresser, you get my drift. So anyway, the saga continues. Hope your holidays are going well. Linda

Hi

One good thing about recuperating is not having to go out in this frigid weather. I bet everyone is busy with Christmas preparations. We got our Christmas gift early in the form of a good report from my surgeon. The postoperative chemotherapy is viewed as an "insurance policy" in case any of those nasty little cells are lurking around microscopically. I go to the oncologist Monday to discuss this next phase. He earlier had mentioned 4-6 months of therapy. Two weeks on, one week off, etc. I am hoping I can wait until I feel better & stronger. However, if it's detrimental, I will have to gear up for it. I came this far through impossible odds-I have to stay strong. As always, my family & friends have pulled me through. For this, I thank all of you. It is amazing what we can do when challenged. Peace, Linda

Hi Everyone

This is quite the test of my endurance. The pain is always with me, sometimes bearable, occasionally unbearable. The meds take the edge off, but leave me feeling like a zombie. I was really glad to get the chest tube out. It was so painful at the insertion site. I was hoping to feel so much better by now. I think my greatest pain is from the rib fractures. Yesterday, Kara took me to their house to do my hair, etc. That was the first time that I went out in the car that I wasn't going to a Dr. or hospital. That's progress. I am incredibly weak-I'm trying to walk around the house & gain some strength. I love all of the beautiful cards & notes that I have been receiving. Thank you so much. I'm sure everyone is getting ready for Christmas. Enjoy the season, Linda

Latest News ~ from Kara

The chest tube is out! The staples are gone! New pain meds have been ordered! Mom had a good appointment with the surgeon Friday. She's still having the pain, but the nausea seems to be under control (for now). She actually was able to sleep last night for longer than 2 hours -- a big improvement! Hopefully she will begin to improve and feel better. I hope everyone is doing well and getting ready for Christmas. Thanks to all for your continued prayers and support. One thing is certain -- our family has much to be grateful for this holiday season!

Another trip to the ER ~ from Kara

I apologize that this blog isn't being updated as frequently as I'd like. It has been a rough few weeks. Mom is still in intense pain and keeps getting extremely nauseated. Today she landed back in the ER at Northside. Yesterday she had developed a new, sharp pain in her upper left chest. It was causing her A LOT of discomfort. Then today her chest tube began draining at the incision site. A call to her nurse resulted in her being sent to the hospital. She had a chest Xray, EKG, lab work, etc. They also gave her morphine for the pain, and fluids. My dad just called from the hospital to let me know that now she is having a CT scan. I believe they ordered it because she is post-op and they want to be sure that there are no blood clots, etc. It has been over 5 hours and they are still at the hospital. I will update when I know more.

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

Testing, Testing

Today, I was at NSH. I had a 2-D Echocardiogram, EKG, Chest X-Ray, CT scan of the head with contrast, and a nuclear stress test. I showed that cardiologist that I AM TOUGH!!!! No problem on that treadmill. I told him to "bring it on." I had my pulse racing, continued talking with him, and successfully kept up with the speed and incline increases. I saw a lot of my co-workers from surgery. That was very nice! All in all, quite a productive day. Happy Halloween to all. & don't eat too much candy!  Linda  :)

Update

Yesterday was a long, exhausting, trying, nerve-wracking, crazy day. Shawn's flight got in Wednesday morning at 12:01 a.m. My parents picked him up and he went straight to bed with a migraine. Everyone was back up at 6:00 a.m. to get ready to see the lung surgeon. We picked up Kara & got to Jameson at 8:30. Dr. Landreneau operates there twice a month and has office hours in between his cases. As a result of his schedule, we didn't see him until 10:30. He had reviewed the days previous CT scan but somehow the one done at Northside on 8/3 was not there. He needed to compare the two to see if there was adequate shrinkage of tumors to warrant the surgery. He ordered a lot of tests but couldn't give us a decision on surgery at this time. I was a nervous wreck by now and, believe me, it only got WORSE as the day went on. We went home and Alan & Shawn ran back up to NSH to get copies of CTs. Then it was time to head back to New Castle to see the radiation oncologist. We dropped off the disc at Jameson and went to UPMC cancer center to see Dr. Wilson. I gave him a copy of the discs which he pulled up on the computer and measured and compared for about 45 minutes. He also had imported the PET scan and compared that. We were still in limbo at this time. He called Dr. L who was still tying to make a decision on surgery. The main concern is the mediastinal node involvement. He was thinking about more radiation but Dr. Wilson (radiation oncologist) explained to him the large dose I had to mediastinal area & that I was maxed out. After a long conversation, it looked like surgery was on. The lung tumor had not shrunk too much which we knew all along because a lower dose was used here. The hilar area tumor appears to be gone. The mediastinal tumor has had 25% shrinkage.My Dr. said if that wasn't addressed, it would have eventually closed off the windpipe. There was a ton more of discussion that I can't go into right now, but I was totally overwhelmed. We had to have Donny meet us in New Castle to pick Kara up because she was late for work & we had to head straight to the airport to drop off Shawn. On the way there, Dr. Landreneau's nurse called to tell me I was on for November 11th. I'll be done right at Jameson where he has his own team & equipment. I'll be in ICU 2-3 days and in the hospital approximately a week. Oh, did I mention I had a tour of the ICU & met the head nurse earlier? Just a little more sensory overload. By the time we got home, I was an emotional mess. My right index finger was totally throbbing & red from those little tumors from the scleroderma. Dr. S came over and checked it and called in an antibiotic. Mo came over to calm things down. Bless them both. I got a call from the cardiologist today for an appt. for a cardiac clearance. I saw him today and he really doesn't know what is causing tachycardia. He said as long as it stays in a sinus rhythm, we're ok. I have a stress test, EKG, 2D Echocardiogram & CXR tomorrow. I also have pulmonary function tests, arterial blood gases, and CT scan of the head Nov. 4th. This is long and rambling. I apologize. I am trying to keep my cool-very difficult right now. Linda     P.S. The surgery will be a left thoracotomy with left lower lobectomy and mediastinal node dissection. My radiation oncologist just called me and said to stay positive-attitude is very important. I get that! Dr. Dayal is at Jameson & looking out for me-Thanks, Martha.

Tomorrow Will Be Great!

Hi everyone, this is Kara. Just wanted to say that tomorrow is my mom's CT scan. She is definitely experiencing some "scanxiety" and I just wanted to reassure her that all will be fine. She is getting stronger and feeling better every day. I just know she will have good news when we meet with the doctor on Wednesday!

Monitor Results

After waiting all day, the Dr. finally callled me at 4:45 yesterday to give me the results. He said the entire 24 hours that I wore the heart monitor showed no irregular rhythms, just tachycardia (I knew that.) It appears I have a rapid heartbeat that may be due to chemo that is still in my system or other underlying causes related to my disease. I have been trying to walk approx. 1/2 mile a day. I did 1 mile yesterday broken up into 2 walks. I see my surgeon next Wednesday so I am trying to get as strong as possible. I want to present a healthy appearance to him. Then, as long as my CT-scan next Tuesday shows shrinkage of the tumors, I will be a surgery candidate once I heal from chemo & radiation & my counts come back up. Have a good day, Linda

Congratulations !

Hi Everyone. I am still waiting for the results from the 24 hour cardiac monitor. However, I want to extend congratulations and best wishes to Heather & Marty. She had a baby boy this morning. If you follow this blog, you know Heather is a very loyal follower. So, Congratulations to the entire Finsley family-including Zoe & Delaney. Welcome, Garrett!  Linda

Saturday Morning

Happy Sweetest Day, everyone. Things are quiet here today. I am assuming I will get the results from the 24 hour Holter Monitor on Monday. Hoping all is well with that. I don't know why I am always so tachycardic, but I can think of several factors contributing to the problem. I've pretty much been in isolation for 2 weeks. My white count was 1.8 on Monday, so I basically have no immunity to anything. The only places I went this week were the lab and NSH x 2. I think Alan & I will go for a ride today in this beautiful weather :(  Again, I want to thank everyone for your continued support. I am amazed at the people who tell me they read my blog, my loyal followers with their uplifting comments, the cards, and flowers. The goodness never stops. Alan said it shows us the wonderful people we have in our life. We sure do and we are very lucky to have them. Alan, Kara, & Shawn, I can never ever thank you for all you guys do for me. You're the best!  Enjoy your day, Linda

Quick Update from Kara

Hello everyone! As requested, here's a quick update. This is my mom's first full week with no treatments. I think more of the side effects of the chemo and radiation, which are cumulative, are beginning to set in. She's been really wiped out, WBC counts are very low and she has no energy. She has also been experiencing constant tachycardia (racing pulse), which is making her weak and shaky. She was sent for an EKG today, which was normal. She will, however, be getting a halter monitor to wear for 24 hours to see the variation in pulse during rest/exertion throughout the course of the day. Her doctor seemed to feel that it was simply her body's reaction to the amount of stress it's been put through over the last 2 months. The doctor's office was nerve-wracking for her because there were many sick people in the waiting room, so mom actually went outside to wait and they called her when they were ready. She really needs to avoid most places and people right now, until her counts come back up. Germs, bacteria and viruses are unacceptable at this point. :) Also, she's started experiencing some painful dysphagia, and is having difficulty swallowing. Her chest/esophagus feels tight and it's becoming increasingly hard to eat. We will modify her diet for the time being (back to milkshakes, soup, mashed potatoes, etc.) and hopefully these effects will begin to lessen sometime soon. Thanks to everyone who has followed this blog and kept my mom in your thoughts and prayers. It helps to know that you are all here with us.

YOU DID IT! (Posted by Kara)

I couldn't wait to tell you CONGRATULATIONS on finishing your chemo and radiation treatments! You should be so proud of yourself. You came through all the ups and downs, days of sickness and exhaustion, hours and hours of IV fluids, daily trips to New Castle, everything, with flying colors. You rock! 
I know all of your fans are so proud and excited for you. 
Take this next month to relax and recover, and gain back your strength. We are all here for you!

I DID IT!

YAY! I'm done with this phase of things. I went to get more fluids today with anti-nausea meds & steroids. Radiation is done. Chemo is done (for now) until post-op. That's way down the road. I get a CT scan of the chest Oct. 27th at NSH (home again), and then off to see my surgeon Oct. 28th. I also see the radiation oncologist that day. There will be a lot of questions answered that day, I'm sure. Shawn is flying in from Charlotte Tuesday nite and I'll have him, Alan, Kara & me. This way four sets of ears, lots of love & support. I can't go wrong. Now, I rest, eat, try to get strong and get my counts up. They are all quite low & dismal, but to be expected from the chemotherapy. I will keep all of you wonderful followers posted on any and all updates. Keep praying. Like Liz Taylor asked, "I'll take any prayers you might have lying around."

Love & Peace, Linda

Monday's News

The weekend started out nicely. We made it to Whitehouse on Saturday, kids took a pony ride, ate a donut, bought pumpkins, etc. Saturday, I was feeling good. Sunday, was another story. Weak, sick, stomach pain, dehydrating before my very eyes. I woke up very sick today, but off to chemoland. Amazing, how those girls can fix you up. I had a bit of a scare because my platelets were only 85,000 and they like a minimum of 100,000 for administration of chemo. The Dr. okayed treatment today due to the fact this is my last treatment and my other counts were reasonable. They gave me extra fluids until it was time for radiation at 11:00. As I walked into that office, the radiation therapist was waiting for me to tell me the linear accelerator was having some problems and I would have to come back later. I then met with the radiation oncologist who seems quite happy with my progress, my physical condition (I haven't "crumbled & deteriorated"), and my mental spirit. He feels we have the mediastinal tumor "on the run". We are very focused on the mediastinum and bronchus right now. These last few days of treatment are not even focusing on the lung as that tumor must be resected out anyway.  I do know I have had response to treatment. My breathing is quiet. The wheezing, whistling sound and constricted feeling is gone. The shortness of breath has improved and the cough has improved. They felt that tumor in the windpipe near the carina was encroaching on and irritating the windpipe and causing a cough. So, as soon as we got back to Poland, the Cancer Center called and said the accelerator was fixed and they needed to get me treated. It is a priority when you have chemo that day as the chemo is radiosensitive. Some of the patients did not get treated today, but I was priority #1. Lucky Me! Back to UPMC in New Castle and zapped. Today, they attached monitors to my chest and side to monitor radiation as this is now becoming intense. Three more days! Yay! We (my family) are all learning a lot about oncology. The nurses want me to be an oncology nurse with them...they also said they don't want to release me from Rx. We'll see about that. I am going to rest for a bit now. I have been on the run since 8:00 a.m. and it is time to conserve some energy. Take care, Linda

We're getting close!

Today at radiation Rx, I got what they call a "boost." They explained the field that was being radiated was being reduced and now the final, very concentrated, refined areas would be focused on. Next Thursday is my last radiation. Next Monday is my last chemo. I was there at Cancer Care for 4 1/2 hours today getting extra fluids and meds to "boost" me up for the weekend. I figure I have about six  phases to get through.    Phase I: radiation & chemo, Phase II: recovery period, Phase III: surgery, Phase IV: recovery period, Phase V: More chemotherapy, Phase VI: recovery period. Anyway, after my fluids today, Alan & I actually went OUT to eat. Amazing! My biggest deal this weekend is to TRY to go to the "pumpkin patch" with the kids. My huge weekend. Oh, to the person who didn't believe I ate a piece of toast this morning and was checking for crumbs, and checking the toaster for heat coming out of it, I have a surprise for you, (you know who you are.) Anyway, just kidding, I know how you care. And, by the way, there was juice in the glass! Love ya'. Hope everyone has a great weekend. Enjoy your day, Linda

Hello

Today's Agenda:

Dr. appt. with medical oncologist-$$$$$$
Lab Work-$$$$$
Chemotherapy-$$$$$$
Radiation Rx -$$$$$$$
Dr. appt. with radiation oncologist-$$$$$$
Lunch at Tanner's- $30.00
Getting to Kara's on time to get Karlynn off the bus-PRICELESS!!!!!!!!
HAHAHAHAHAHAHAHA!


Feeling good today-Hooray for pharmaceuticals!   Linda

Not such a good week

Hi Everyone. Sorry about the lapse in the blog. It's safe to say when I don't come on here for days, I'm not having a very good week. Mon. & Tues. were ok. By Wednesday, I was needing fluids again. I slept all day Wed. & Thurs., like a zombie. Friday, after radiation, I stopped in at chemo & they gave me IV fluids, an IV drip of Kytril (for nausea), an IV drip of steroids, and IV push of Ativan (for nausea). I was there for four hours. (Thanks, Debbie, I owe you BIG TIME! We did have a great conversation.) Afterwards, I must say I felt better. Debbie stopped at Mcdonald's on the way home & pulled a cagey little trick with the french fries! I was just glad I was able to eat. Dehydration occurs very quickly when you don't eat or drink. The oncology nurses are funny. They were telling me it was important to get feeling better before the weekend, because it was going to be a long weekend. Now, I know, I'm not that out of it. I'm trying to think up holidays that I'm missing for the weekend. They just meant they wouldn't be around on the weekend and feeling lousy all weekend long could make 2 days seem like 17 days. That's for sure!  Anyway, today seems good. I slept well, ate, & I am sitting upright. Ahhh, the little things in life that mean so much! HAHAHA. Have a good weekend-enjoy your days. Linda

The Countdown Begins

Well, I now have 13 more radiation treatments and 2 more chemotherapy treatments. I'm half-way there. This is the first one of the two weeks we were supposed to be in Florida. So, instead of walking along the water in the beautiful, white sand...I'm here, walking down the halls of UPMC Cancer Center. Instead of eating fabulous seafood, I'm having Ensure & protein shakes. Instead of lying on a beach chair in the fabulous sun, I'm lying in a recliner watching my chemo dripping into my body. But, that's O.K. because I have all this to look forward to in the future. The trip, I mean, (but also the chemo because I get to have more after the surgery..Yippeeee!)  Anyway, this was a bad weekend-lots of stomach pain. We got it all straightened out though. Three more new meds. One is a preventive medication so I don't get a yeast infection of the esophagus. Sounds nasty and is quite painful, I understand. The other soothes and coats my esophagus & stomach, and the third helps empty my stomach. I was having this phenomenon of eating or drinking 1/2  ounce of anything and I was totally full & unable to eat/drink any more. That definitely wasn't working out while trying to maintain my weight. So, between the stomach meds, cough meds, anti-nausea meds, pain meds, and anti-reflux meds., I am doing my part to keep the pharmaceutical business hopping. At chemo today, because of my prior weekend, I got an extra bag of fluids again and some extra anti-emetics. I think I'll get another bolus toward the end of the week. Shawn, Jen, & Cooper are on the way home to North Carolina  :(  He was able to take me to chemo, radiation, & Dr. visit today :) We're going to try to go to Kara & Donny's for dinner tonight :)  Alan will get a break from kitchen duty. Hope this catches everyone up. What a loyal bunch of friends you are. My good friend said it best when she got sick, "Angels came out of the woodwork." ..........and they have!   Love, Linda

Bad day today (written by Shawn)

Hey everyone, this is Shawn.  Jen & I came home from Charlotte for a long weekend to help out with mom.  Today I drove her UPMC for radiation therapy, met Bob the therapist and he gave me a tour of the Linear Accelerator.  That is some amazing equipment and I can see why everyone says how far medical technology has come in the past 10 years.  After therapy I tried to take her to lunch but she was not feeling up to it at all.   Drove through McDonalds for a shake, but she couldn't even eat that.  It got progressively worse throughout the day.   She couldn't eat anything much all day.  She has stomach pain directly related to the radiation.  At about 8:00 pm, I ended up just calling her radiation oncologist directly on his cell phone to ask if he could get a prescription ASAP to help with her stomach.  Not only did he get one, I ended up with three meds.  I can't believe this guy - after hours, on his personal cell phone, and I had prescriptions within 15 minutes at walgreens.  I didn't like the answers I got at walgreens so I called the doctor again to ask about dosage and he was more than happy to answer my call.  Now that is service.  She is now loaded up on her meds, and we are determined to get her feeling better tomorrow and get her through all of this (which we WILL).   HANG IN THERE MOM!  We all love you and you know everyone is thinking of you. 

I spoke too soon

I  was feeling pretty good and then last evening  I started getting very bad stomach pains, chills during the night and got up at 5:00 a.m. deathly ill. I was sick for hours and this time the Zofran was not working it's magic. Kara came over & Alan came home from work to find me lying on the bathroom floor. Kara called the oncologist and they said to bring me in. "Oh sure, this is going to be possible," I thought to myself! They threw some clothes on me, no make-up, no jewelry, NO LIP GLOSS, and threw me lying down into the back seat of the car. As soon as we got to UPMC, Alan checked me in as I continued to be sick in the bathroom. The Dr. examines me, blood is drawn, fluids are ordered and then more anti-emetics for the pre-chemo RX. As I reclined in a chair for the next three and a half hours, covered with warm blankets and getting IV's (through my fantastic new mediport), I began to feel human again. Next some more saline IV boluses to flush out all the chemo and they kept giving me fluids until radiation was ready for me. Radiation then took about 30 minutes because once or twice a week, all landmarks are re-x-rayed and re-simmed. Then we shot at those nasty tumors and 4 hours later from when we arrived, it was off to home. Yippee! So at this moment in time, for right now, I feel good. Linda

Chemo tomorrow

Third round of chemo tomorrow, followed by radiation Rx. I get blood drawn first to make sure the counts are compatible with chemo.  I'll meet with medical oncologist tomorrrow. I met with radiation oncologist today. Once again, he emphasized rest & eating. I only lost 2 # from last week which is great. Basically, he does not want me to do anything. That is very much of a change in my lifestyle. However, the concurrent chemo and 3 sites being irradiated make it very easy for me to do nothing. Since this stuff has a cumulative effect, I can't even imagine the fatigue level that lies ahead. The Zofran is working out nicely for the nausea. Tylenol Extra Strength helps the aches & pains. As far as the fatigue, lying in bed or on the couch helps that. My workout is walking from the bed to the couch. I keep telling myself , "This is only temporary." I hope to come on here tomorrow and tell you that  everything was uneventful. Have a good night, Linda

1/4 of the way there!

I am officially 1/4 of the way done with chemo & radiation. Week #2 of 7 1/2 weeks is over. Yay! I am beginning to see a pattern emerging here. The day of chemo and first day post-chemo are not too bad. I am so full of the premedications & steroids, I feel ok. This is when I go shopping, out to lunch, visiting, etc. (Well, not any more-my oncologist said shopping , etc. is off limits.) However, the second day post-chemo is HORRIBLE...overwhelming nausea, impossible fatigue. My friend, Sue who is a CRNA drove me to radiation Thursday. I was a very poor traveling companion, (Sorry, Sue.) Anyway, once again, the staff took one look at me and said I needed to see the Dr. Sue was talking to him about anti-emetics as I sat with my head against the wall just trying to not be ill. Anyway, they decided upon Zofran ODT, which dissolves on the tongue. It has been a lifesaver. I take it every eight hours. I will be taking it round the clock day 2-5. The fatigue is helped by lying in bed approximately 18-20 hours. Now, that those minor details are worked out, things will hopefully be better next week. (Always a solution, we just have to keep searching.) For those of you who visited & sent me the birthday cards and gifts, you are some very special people in my life. The afternoon shift from Northside Surgery that called Friday night and sang Happy Birthday sounded like a chorus of angels! Debbie, thank you for handling the sandwich ring meltdown. I just knew I didn't have the energy to deal with that! No more jokes about it, either. So, it really wasn't how I would have ever planned to celebrate my birthday. Lying in that linear accelerator is not really what we would ever think our day would include. However, the caring & compassionate people in my life make it all bearable. As I sat in the waiting room, the entire staff, including my radiation oncologist came out with a little cake and sang "Happy Birthday." People are just good-life is good. Thanks, everyone, for your unwavering support. Love, Linda

*Posted by Kara* Happy Birthday!!

Happy Birthday, Mom! We love you!

Hi Everyone......I'm back!

Wow, Labor Day weekend was not so good this year. No Canfield Fair, lots of fatigue, Friday was full of nausea/vomiting, aches, pains-yuk! After spending about 24 hours in bed, I started to regain some strength. Yay! This morning, I woke up at 4:00 a.m. coughing up blood. Alan, who is now my nurse (how's that for role reversal?), brought me some cough medicine, told me to relax, take deep breaths, and propped me up on several pillows. I got a bit of sleep, then we had to be back at UPMC Cancer Center before 8:00. (My second home.) A hugely busy day for them as they had to fit all of Monday's patients in today since they were closed on Labor Day. I was apprehensive about my new port, but my beautiful nurses took my hand and held it, said take a deep breath, you'll feel a pinch and they were in! Yes! God bless Dr. Smith! They drew the blood work from the mediport, the counts were fine, I got my pre-medication, got my chemo, saline flush, and I was done. Now, it was off to radiation, into the linear accelerator where they resimmed images and whatever else they did, zapped the nasties and then I had an appointment with my radiation oncologist. We had a good appointment although I think the Dr. was fishing around trying to see if I went to the Fair. I said, "Of course not, I am a very compliant patient!" He just looked at me and laughed. Now, Alan & I were on this high that occcurs when days kinda work out. That doesn't happen too often. I had lost more weight which they monitor intensely. I was actually feeling hungry. Alan stopped to get me a milkshake at McDonald's and his burger smelled good so he went back in & got me a cheeseburger & fries. (There's some healthy eating for ya'. I haven't had fast food in 10 years.) Then we surprised Kara at preschool -meeting up with her to see how Mackenzie's first day of school went. I went shopping with her to Kohl's. I think she was quite happy-a bit of normalcy in a life gone wild. Now, I'm just hanging out on the couch. Kara brought over dinner-she's an angel. Thank you all for your continuous support & concern. What a bunch of beautiful people I have in my life. I am so lucky, Linda

*Update by Kara*

Mom is still trying to recuperate from last week. It has been a rough weekend and she asked me to update her blog. She is starting to regain some energy, but is trying to conserve it for tomorrow. Up next: UPMC in New Castle before 8 a.m. for bloodwork. The numbers will determine if she can have chemo. After chemo, she'll go to radiation therapy, where she will be re-simulated, have her markings checked and all computerized images re-checked by the doctor. Once these are precise, the three areas will then be radiated. After that, she'll have a visit with the radiation oncologist. As you can see, it will be a big day, which is why she is saving every bit of strength. She said to tell you all that she enjoys reading all your comments and thanks you all very much. Happy Labor Day!

EXHAUSTION Sets In *Update from Kara*

Hello everyone, my mom asked me to blog for her today. She just is not up to it. I think everything has finally caught up with her.

Yesterday she underwent her third surgery in 30 days. Her power port was removed and a medi-port was inserted. The operation went very smoothly and quickly. Her surgeon had a cancellation, so she was called into the hospital earlier than planned.

We started off the day with radiation. She wasn't feeling well – probably a combination of side effects from her treatments, thirst/hunger from being NPO, exhaustion from not sleeping the previous night, and nerves/anxiety about the surgery. We arrived home from radiation to find a message from Northside asking her to come in earlier. So we turned around and headed right back out. Mom was exhausted and had been looking forward to an hour nap before going in, but that didn't happen.

After she was discharged, she went home and slept for about 5 hours or so. She got up, ate some chicken soup my dad had made (yum) and took one of her pain meds and fell asleep again for the rest of the night.

Today it was back to radiation at 9:15. Of course, there were delays and she had to wait. Then she started feeling very nauseated, tired, and started coughing. Her doctor said no Canfield Fair for her this year. He wants her to spend the next 4 days recovering and getting her body stronger before chemo again on Tuesday. Of course she is disappointed, but understands that she must rest and recover.

So at the moment she is at home in bed, feeling an overwhelming exhaustion and fatigue and fighting nausea. She is also in a little pain at the site of the mediport insertion. The plan is for her to stay home and rest until Tuesday.

Please continue to send positive, healing thoughts and prayers to my mom.

All Around Town

Today should have been uneventful. A quick trip to radiation Rx-a nice rest in the linear accelerator, and on my way home. Well, we are starting to realize things are just not that easy for me. I have been complaining of severe pain from this port since insertion. I knew I had to address it today. After radiation, Kara, Karlynn, Kenzie, & I took a chance and drove down to the lung center at Jameson. Of course, it was closed today, but as we wandered around, we met the surgery supervisor-a real stroke of luck. She checked my port for me and we became more convinced, it was not right. She tried to call a few general surgeeons to take a look, but they were all in surgery. She said she would put me on the schedule immediately, working around my radiation times. She was wonderful, but I had other plans. I wanted to come back home to Northside for this intervention. I had to drive back to cancer care to check with oncologist if power port could be replaced with a mediport. Then, I had to go to radiation oncologist to see if any problems with placement so as not to interfere with radiation. They were emphatic about not removing any markings, so whoever my hike nurse is....look out on the prep! Next, a call to the original surgeon in Pittsburgh. Then I called NSH surgery, they hooked me up with Dr. Smith, off to his office to fill out paperwork, and be examined. So, guess what, yet another surgery this Thursday for repositioning of port ,or removal of and insertion mediport, and probably evacuation of hematoma. Dr. Smith is graciously working around my radiation schedule. So,Thursday morning, up & out of the house, get irradiated, off to NSH for a little surgery. No Canfield Fair Thursday night. My fair-going is getting seriously curtailed this year. But, I did get the OK to go from both oncologists as my counts are good and I am staying strong. As I said before, just another bump (inconvenience.) These little things can't be allowed to win & get me down. I'm stronger than that. Linda

One Long Day

Hi Everyone, Here's my day. I'll try to be brief because I am getting rather exhausted. We left the house at 10:15, saw Dr. Spielvogle (medical oncologist) at 11:00. He told me due to the severe life-threatening reaction to the Taxol on Wednesday, he or his partner would NEVER EVER order that drug or any derivative of it. He said the problem lies in the medium or binding agent that is is attached to the drug. He said that is the drug he would have preferred to use post-op, but it was now out of the question. A little more disappointing news, but I'm getting used to that. There are other drugs we can use. Next, he told me to take a chemo chair, but I was early for my appt., so we just drove around Amish country for awhile listening to Frank Sinatra sing, "High Hopes." This was given to me by my dad. I must admit it was a bit surreal. Poor Mo was in the back seat spending the first day of her vacation like this.Back to UPMC,Alan gets kicked out of the room while they once again try to access my port. I about crushed Maureen's hand as they stuck me with needles for half an hour. It was horrible.I couldn't take the pain any more, they stopped their tries, started an IV in my left hand and we went from there. First line drugs were Kytril & Decadron, then time for the Carboplatin. I was SCARED TO DEATH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! However, I tolerated it, they started real slowly & then gradually turned it up on the pump up what it should have been originally. I , of course, questioned the nurse to see if it should be going that fast. She said,  "Do you seriously think I can go through that again with you like last week?" Haha. Now, it was off to radiation Rx. 40 minutes in the accelerator (or whatever it's called-I can't think straight anymore), I was re- scanned, re-simulated, remarked, rechecked, re-everything, Dr. Wilson checked all coordinates and then I was radiated. I kept saying to myself, "Kill them, kill them, kill them!"After lying motionless for 50 minutes with my arms over my head, I was done. Next, off to see Dr. Wilson, the radiation oncologist for a visit. OK, that was my day, went to eat , came home to Y-town, went to surprise Kara, Donny & girls, and now it is time to crash. Thank you for all of your beautiful messages, prayers, inspirational thoughts, cards, gifts, flowers, food, cookies, clothes, jewelry,phone calls from all over the USA, prayer lists, special prayer services. I could go on forever. I am so blessed. Even though I was going to turn off the computer, I want all of you wonderful, caring people to know what happened today. Hope I gave you a good idea of my day. Love & Blessings to all of you, Linda

Monday's Game Plan

We will try this (chemo) again on Monday. I have to go to UPMC at 11:00 for an appointment with my medical oncologist to be checked after the reaction I had on Wednesday. Then, at 12:30, we start the one hour of pre-medications to try to avoid any allergic reactions, nausea, vomiting, etc. Then, they will begin the Carboplatin (probably with a crash cart by my side!) I can no longer have the other drug because of the severe reaction-they didn't feel they wanted to risk a cardiac arrest-nor do I! So, even though I am down to only one chemo drug, they feel it is going to be effective enough combined with the radiation. As my radiation oncologist explained, the chemo sets up the target and then the radiation acts on that. After the chemo is completed, I go to the radiation oncologist at 2:30 and get the three areas zapped! I sure hope this goes well on Monday. I am so ready to start annihilating this nastiness. So now this weekend, we have to have positive thoughts that this is going to be an effective treatment on Monday. No bumps in the road Monday-I'm just asking for one s-m-o-o-t-h day. Peace, Linda

Yesterday was scary

My first chemo and radiation day. I was so excited to start blasting this nastiness out of me. They called me to come in early to UPMC to access the Power Port which was really giving them a lot of trouble with the major swelling & bruising.. After a couple of tries and minimal pain, they did it! We started premedication. That took about an hour. I was in a private room with Alan. We had recliners, TV, snacks, soda.  All was well. They prepared to start first line of chemo. My nurse said she would not leave my side-she was about 2 feet from me.She told me to tell her ANY weird or strange sensation. About 3 minutes into the infusion, I started to feel some aching across my entire lumbar region-I didn't want to complain because you feel like a hypochondriac, and I had been lying in the chair for over an hour and just though it was aching. Well, it became progressively worse, I had to let my nurse know. She jumped up, stopped the drip, grabbed a syringe and withdrew all of the chemo drug that was in the tubing, called in other nurses, grabbed a steroid (solu-medrol or solu cortef-I'm not sure because I was beginning to black in and out by now.) I started to have severe chest pain radiationg over my entire chest and into my jaw. I was losing consciousness, they were calling in the Dr. and all other nurses. They were trying to get a pressure, I could hear them saying 40-I hope that was diastolic and not systolic, pulse was dropping along with oxygen saturation.Next thing I knew, Noga ambulance was in the room and two attendants were lifting me onto a cart to take me to the ER at Jameson. They took me out into the ambulance and were trying to stabilize me before pulling out of the lot. Poor Alan was so nervous he couldn't remember where he parked the car. He found it and pulled up behind the ambulance.They thought I was having an MI or some coronary artery spasm. They had me on the monitor, O2, gave me baby ASA to chew, and then nitroglycerine sublingually every five minutes. The EKG machine was right beside my head and it looked like NSR to me, I kept asking the paramedic and she said it looked good. She used to work on the mobile intensive care unit so I felt quite safe with her.After being checked out in ER, they agreed it was an allergic reaction to the chemo-now I can't take that drug. I can't start treatment until Monday now so another little bump in the road.That was quite disappointing to me. One of my nurses at Jameson was the husband of my Nuclear Med Tech from my scans I had done on Monday. What a small world. I was afraid to let the nurses in the ER remove the needle from the port because I wanted the nurses at cancer care to have their landmarks for the next insertion on Monday. So, I had the ER nurse call UPMC. She irrigated the tubing, capped it off and we ran back up to UPMC to get the needle removed, spoke with radiation ocologist again, back to chemo office again and then out of there. A V-E-R-Y long, stressful day. Of course, Alan wanted me to EAT, so as we were sitting in the restaurant, Dr. Wilson, my radiation oncologist called me. I just find it soo amazing his attentiveness to this case,. He really is a special guy. We came home, had our usual gang of well-wishers and phone calls to answer and we crashed. Your prayers worked, I'm still here, it takes more than that to get me down. We will try this all again Monday. Positive thoughts everyone and have a beautiful weekend, Linda

*Prayers Please* from Kara

Just got the call. Mom had a reaction to the Paclitaxel. They are taking her by ambulance to Jameson Hospital. She started having chest and back pain. Treatment was canceled for today.

* Chemo Update from Kara *

Just received a call from my mom. I was not able to go with her today :( but she is doing fine. They had trouble accessing the power port yesterday so they asked her to go in early today. Two tries and they were in. She is very sore though! Yesterday she said it was the most horrific pain she's ever felt – apparently swelling around the implantation site made it difficult to access the port. So, she was nervous about them trying again today. Now, she has already received the Kytril, Benadryl, Decadron & Pepcid. The nurses were just going in to begin the actual chemotherapy: Paclitaxel, then Carboplatin. She said she felt great, but was extremely drowsy from the Benadryl. She was falling asleep mid-sentence. I told her to give the phone to my dad. This may be the first time she gets to sleep in weeks! Some patients can develop an allergic reaction to Paclitaxel; this would occur within the first 5 minutes after it was administered. My dad has orders to call me in 10 minutes to let me know how she's doing. :) More updates later.

It's A Go!

Chemo tomorrow-12:45, Radiation to follow-4:15. Here we go...the journey begins. Wish me luck to climb this mountain. Linda

Dr. Spielvogle's Visit

Today, I met with my medical oncologist and the rest of "MY TEAM" at UPMC. All very nice, devoted, dedicated, compassionate people. Chemo will be one day a week for three hours for 6-7 weeks. This will be running concurrently with the 5 day a week, 71/2 weeks of radiation. I will be premedicated with Kytril, Benadryl, Decadron & Pepcid for one hour prior to the chemo. Then, Paclitaxel will infuse for one hour, followed by Carboplatin for approx. 45 minutes. Five tablets of Decadron the night before and five tablets the morning of chemo. Blood will be drawn prior to each treatment focusing on RBC's, WBC's, Platelets, & Neutrophils. Weight and nutrition is a huge issue. If you lose 10-15% of your body weight, a feeding tube goes in. IV's as needed if felling sluggish and dehydrated. If you haven't noticed by now, EATING is a huge issue. So my life is now focused on the most calories I can manage to eat. Because radiation will be affecting the esophagus, there is a little extra problem. But, as my Dad told me, "These are just inconveniences!" There will be NO feeding tubes in my future. I will do what ever is necessary. Failure is not an option. (Debbie, take your laptop to MB-I need your hilarious comments.) Linda
By the way, this all begins tomorrow if they can get the pre-authorization from my insurance (not being real helpful), otherwise, Monday is D-Day!

Linda's "Inspiration Wall"

BY KARA

Mom, I took a picture of your living room just to remind you how many people care about you and are thinking of you daily. This is just a small sampling of the many, many cards, flowers, angels and other gifts you've received over the past several weeks. WE LOVE YOU!

WONDERFUL NEWS!

My radiation oncologist just called me (that's right-it's after 8:30 p.m.) and said the brain MRI that I had done this afternoon was negative. I can't tell you the relief we all felt. Alan about dropped to the floor, Kara was estatic, and I am so thankful. The Dr. had actually called me earlier this evening (about 5:00) about another matter, but he usually scares me to death as he is very matter of fact- no sugar coating. He gives me cold, hard facts. However, he is such a superior intellectual braniac, he is amazing. The knowledge he possesses in his work is phenomenal. I asked him if he was still at work tonight. He told me I would think he was crazy if he told me that he was. I told him I could deal with that kind of dedicated & devoted craziness! Especially since he is spending so much time on my particular case. Anyway, if we can get the time allotted on Wednesday with the medical oncologist (approx 3 hours for Rx), the chemo and radiation will start Wednesday. Otherwise, we start next Monday the 31st (my mom's 86th birthday.) He reiterated I must come through this chemo & radiation stong & intact to have the surgery. That is my only option-no plan B. So, to all of my fabulous followers, please keep up your good thoughts, prayers, or whatever you believe in. I do believe it is working. Pray that I can EAT and stay strong! I'll probably gain so much weight, they'll tell me I have to lose weight to be a surgical candidate. HAHAHA! Love, Linda

Two done, One to go

I went to Jameson this a.m. for my esophageal transit study & a gastric emptying scan. The first test involved swallowing some H2O laced with a radioactive tracer followed by a quick X-ray. I thought this is a piece of cake compared to what I have been going through. Then my lovely nuclear medicine technologist, Shannon (who lives in Poland and knows my neighbor), made me a scrambled egg in the microwave with a radiopharmaceutical as one of the delicious ingredients... and I had to eat this! Immediately after, she had me lie down in a gamma camera scanner and X-rayed me continuously for NINETY MINUTES! She showed me anterior & posterior views of my stomach digesting the egg and moving it along in my system. She let Alan stay in the room with me, provided us with encouragement, support, & warm blankets. This afternoon, off to Northside Hospital for a MRI of the brain. I may not answer the phone any more today...always calling to schedule yet another test! Linda

More Tests Tomorrow!

O.K., so tomorrow at 9:00 a.m., I go to Jameson Hospital for an Esophageal Transit Study & Gastic Emptying Scan. I think I swallow some sort of radioactive substance & they fluoro as I swallow. I am not researching this too much- don't want to know-sometimes ignorance is bliss. They have to check my esophagus which has decided to act up a bit due to the scleroderma. What's one more little bump in the road? Anyway, if I can get this MRI of the brain done sooner & the medical oncologist gets everything in order...there is a possibility of starting Rx this Wednesday. This will consist of the radiation therapist doing a confirmatory simulation which entails obtaining films for the radiation oncologist to verify accurate set up. Once these films are approved by the Dr., the first Rx will begin. I don't know too much about chemo yet, I go to him on Tuesday. Isn't it amazing how life changes make you an expert on things you never thought you would need to know? Linda

*How to Leave Comments on Blog* BY KARA

Hello everyone … it has come to my attention that many people have been having trouble leaving comments on this blog. I've recently changed some of the settings to make the process a little less complicated. First, we'd like to invite you to become a "follower" of the blog by clicking on the google follow button to the right. You'll be able to upload a photo of yourself and will be an official member of the blog. If you'd just like to leave a comment, simply click on "comments" located directly underneath each post and scroll to the bottom of the page. There you'll find a blank box in which to post your comment. Once you've entered in your message, select "Name/URL" where it says "comment as." Enter your name. You can leave the URL field blank. Hit "continue," then "post comment." That should do it!

Our entire family would like to thank everyone for their kind words and prayers. We are so thankful for all of you!

Radiation Oncologist Message

Well, here it is Sunday afternoon, and my Dr. just called me. He calls me after hours all the time...very dedicated. I think he lives in his office like a mad scientist. He said he has my plan of care together for the radiation and depending on how quickly I can get my brain MRI done and how quickly the medical oncologist is ready (I see him Tuesday), we will be ready to start Rx. He said he was very happy & surprised with how my plan came together. He said it usually is quite complicated & time-consuming. He said he felt someone must be praying for me. I assured him that was true! His major emphasis was on nutrition, staying strong throughout this so that I could remain a surgical candidate after treatment is completed. He said calories, calories, calories! So, now that I have an excuse to eat, it's incredibly hard and everything tastes like sawdust. Isn't that how it goes? Keep up the prayers & good wishes...it's working. Love you all, Linda

GOOD DAYS, BAD DAYS

Well yesterday was one of those downer days-Dr.(Tell it like it is) Wilson did not hold anything back. It was way too much information to take in at one time. Our appt. with him lasted over 1-1/2 hours and was jam-packed with risks, statistics, side-effects, etc. I couldn't listen any more. Today, back to UPMC for a specialized CT scan that would be analyzed by the Dr., physicist, radiation therapist, and the exact coordinates would be plotted for my radiation Rx. I was then injected under the skin with India Ink which tatooed areas for radiation. Then I was marked externally over these sites. I will have more drawings at my next appt. Amazingly, today I felt better. I was in the scanner with my arms secured above my head for about 30 minutes. They were afraid to access my port for the contrast, so, yes, another IV today. I feel like a colander. Ursula, my radiation therapist was tall and blonde and I kept thinking she seemed like straight out of a James Bond movie. (Probably the combination of all the high tech equipment in the room we were in, her name and her looks.) So, preliminary plans look like 7 1/2 weeks of radiation 5 days a week. The actually zapping is only 30 seconds-it takes longer for the positioning. To all of my guardian angels out there, calling, visiting, sending cards, food, gifts, prayers, good wishes, etc.-my family and I "THANK YOU."

Don't Let It Get You Down, Mom! ~ BY KARA

Today was the appt. with the radiation oncologist. It was pretty overwhelming for my mom. The oncologist seemed intelligent enough, but lacked a good bedside manner. My mom felt discouraged (even though Dad and I didn't!); however, we have no reason to think that radiation, coupled w/ the chemo, won't work their magic on these tumors. It's gonna be a hectic 7 weeks, Mom, but we're all here with you! You can do it! :) In the meantime, here are some quotes you need to read:


The human spirit is stronger than anything that can happen to it. ~C.C. Scott

Become a possibilitarian. No matter how dark things seem to be or actually are, raise your sights and see possibilities - always see them, for they're always there. ~Norman Vincent Peale

One must not forget that recovery is brought about not by the physician, but by the sick man himself. He heals himself, by his own power, exactly as he walks by means of his own power, or eats, or thinks, breathes or sleeps. ~Georg Groddeck, The Book of the It, 1923

Keep your face to the sunshine and you cannot see the shadow. ~Helen Keller

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss


:)

So Glad It's Over

Well, today was one of the most stressful , overwhelming days of my life. It was so long & tiring. We arrived at UPMC at 8:15 a.m., and finally got back home after 8:00 p.m. I feel pretty good as far as the nausea goes, I had a ton of drugs for nausea, anesthesia, etc. It was very difficult to wake up. The POWER PORT is quite painful. They tried to give me Dilaudid, Percocet, Vicodin, but I refused. I just wanted to GO HOME! Now, I am sufferring for my decision. The resident said it should feel fine by tomorrow. Easy for him to say. So anyway, I am taking Advil and it hurts! Shawn is flying back to Charlotte tomorrow :( but I'll have Kara & Alan. YAY. It sounds like the surgeons felt pretty hopeful. I, of course, remember nothing, but that's what my fam says. This type of tumor is very responsive to the chemo. So, now starts the next part of my journey. Thank you all again, and Kara, Shawn, & Alan, I LOVE you all more than you will ever know!

Latest

Well, she's all done. The procedure went well. We are waiting to see her in recovery. Dr. Schuchert, who performed the EBUS w/ Dr. Landreneau, just came in to talk to us. There is some involvement w/ the lymph nodes and airway lining, but it has not spread elsewhere in the body. Next step -- chemo and radiation. Dr. Schuchert said her type is sensitive to the chemo/radiation treatments and they have seen dramatic results in some cases. That's going to be her! Once the tumor has been shrunk, they'd still like to perform surgery. We meet with her oncologists on Thursday (radiation) and Monday (chemo).

~ KARA

Almost Done!

Well, we just got a call here in the waiting room from Dr. Landreneau. Shawn spoke w/ him and he said they were just finishing up w/ the bronch/EBUS. He said all they had left to do was put in the MediPort (sp?). We were surprised to get a call this soon - this was much quicker than we anticipated. Dr. said the mediastinoscopy was not indicated. Dr. Landreneau told us to call his nurse tomorrow, set up an appt. for chemo (which we already have) and said he will meet w/ mom again within the next couple weeks in New Castle. So, I guess there were no surprises :) and everything went according to plan in the OR.

They told us the MediPort would take around 1/2 hour or so, longer if they had trouble w/ positioning. Can't wait to see her in recovery!

~ KARA

In Surgery

They finally took her back to surgery at noon. Now we wait. This could take several hours. I'll post again when I know more. The doctor is supposed to call and update us every 2 hours or so.

~ KARA

Still waiting - BY KARA

Well, it's almost 11:30. We were able to come up and wait with my mom in the pre-op area. The room she is in is private -- bathroom, tv, computer. One of her doctors is here; we are waiting on the other one. Hopefully he will arrive soon!

Mom is anxiously waiting. She has applied her lip balm and perfume and is ready to go. She has a scopolamine patch on to try to prevent post-op nausea.

She has had a string of visitors while in this room: three RNs, Dr. Landreneau's personal nurse, anesthesiologist, nurse anesthetist, student nurse anesthetist, med student, surgical resident, bloodbank tech, surgery nurse, etc... with more to follow!

Will update later.

*update

A recovery room nurse just made an announcement to everyone in the waiting room. She explained the surgery/recovery procedure. She said that in the recovery room, there are 27 beds, with a nurse-patient ratio of 1:1. Awesome! However, some orthopedic patients may be out of luck; she said they're expecting a bed shortage on that floor. She also told us that patients can expect to be in there for 3 hours! Better call a backup babysitter! My mom is still wondering why in the world she had to be here so early, and is in awe of what's going on around her ... Dad is stone-faced, pretending to look at a car magazine ... Shawn is drinking coffee and exerting his calming influence over us all ... and me, I'm trying to distract myself by blogging ...

Oh! They just called her name and took her back, I guess for lab work, etc. Now we wait for our pager to light up so we can go be with her before the surgery begins.

At the hospital - posted by KARA

Hi, Kara here again. We made it to the hospital! This is pretty unbelievable. The waiting room here is crazy. There has to be 50+ people here waiting -- a real motley crew. :) This place functions like a well-oiled machine (my mom's words). We are currently in the surgical family lounge. We (dad, Shawn and I ) were handed a pager -- just like the ones you get at a restaurant, that light up when your table is ready. There is a large screen in here, similar to the ones at airports, with real-time patient information. It tells you the status of each patient: preop, surgery started, in OR, in ICU, etc. We've never seen anything like this. Once they take my mom back, we can follow her progress on the screen. Eventually they will take my mom up for labs. Then our pager will flash and we will be permitted to go up and stay with her until they actually take her into surgery. Then we will return to this room , watch the screen and wait. It is currently 8:45 a.m. Not sure why we were required to be here sooo early, as her surgery is scheduled for 11:30. We have a loooong day ahead of us. People continue to pour into the room. Phones are ringing, pagers are flashing. It's amazing. I brought my laptop and was lucky enough to find an open network here. I will post with more updates later. We're all anxious, and ask that you continue to keep my mom in your thoughts and prayers.

Waiting for Tomorrow!

This is the hardest! It is much easier being the nurse than the patient. After a myriad of calls from Pittsburgh today, the time was set, the directions were given, and all of our travel arrangements were made. But wait, I received a call at 6:30p.m. changing my surgery time. The original arrival time in Pittsburgh was 5:00a.m! Surgery was to be at 7:30. Now, arrival time is 8:30, surgery around 11:30. Well, at least we aren't getting up at 2:30 a.m. (I guess it doesn't matter-no one really sleeps.) My priest just left-he annointed me and prayed with us. He has been very attentive & helpful. So now, what does any normal person awaiting surgery tomorrow do? I think going to Handel's sounds like a good idea. I have to keep my strength up and quit losing weight, right? :) To all of you following this, I thank you for the love & encouragement. It helps more than you will ever know. Linda

PET SCAN results

I just got a call from Dr. Goldstein, my pulmonologist and he said the results of the PET scan look like the disease is confined to the chest. He said he wanted to be able to offer me some good news. I will take that news and try not to think any further about everything else. Shawn will be flying in from Charlotte on Saturday and I will have my posse of Alan, Kara, & Shawn when I have my procedure done on Tuesday. Wish me luck!

PET SCAN

So, today was a long & trying day. After arriving at the facility, getting my sugar checked and getting injected with a radioactive substance, I was placed in a room by myself for an hour. This was to let the injection travel throughout the body. I had to enhance this with three glasses of water. My trusty Alan was by my side, however, he had to sit in the hallway six feet away from me as I was radioactive at this point. When the time came to do the scan, I was positioned in the scanner with my arms strapped over my head for the first portion of the exam. Then, they brought me out of the scanner and repositioned me, this time with my arms strapped firmly at my sides, with my hands splayed out over my lower abdomen. Another 30-35 minutes in the scanner and I was done. Yay! Now, I was really glad to be done & get out of there. I was kind of achy and stiff and had a headache. UPMC was adamant that I get a copy of the PET scan and overnight it to them, but unfortunately, the computer was not working to copy the disc. After all day long of checking with Southwoods to see when the disc was done, going to NSH to pick up CT scan discs, checking to see when the post office closed, they finally got it working. So, I think the films, discs, and whatever else needs to go are on their merry way to Pittsburgh to be in place for Tuesday which will be a hugely critical day. That will be spent at UPMC-Shadyside and we are all anxiously awaiting results of the procedures.

Today's Appointment 8/12/09

POSTED BY KARA:

Today we met with Dr. Rodney Landrenau, surgical oncologist at UPMC. We were able to see him at Jameson Hospital in New Castle, which eliminated the longer drive to Pittsburgh. After a fairly long wait (2+ hours) we were called back. Dr. Landrineau immediately struck us as dynamic, confident and competent. He said he was optimistic and positive, and that we should be, too! Dr. Landreneau will begin her on chemo to try and shrink the tumor near the carina. He then hopes to be able to perform a surgical resection, leaving as much healthy lung tissue behind as possible. He ordered a battery of tests to be performed in the coming weeks (see schedule below), and scheduled an EBUS (Endobronchial Ultrasound) for Tuesday, Aug. 18 at UPMC Shadyside in Pittsburgh. Check here: http://health.ucsd.edu/specialties/pulmonary/procedures/endobronchial.htm for more info on the procedure. See more on her doctor at: http://www.upmccancercenters.com/search/page_physbio.cfm?id=3567.

All in all, it was a very encouraging visit!