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!