Saturday, December 18, 2010

Tonight as I was sitting in the living room with Alan, Kara, Donny, & the girls, I heard some beautiful voices outside. We opened the front door and my friends from Northside surgery and X-ray were on the porch singing Christmas carols. What a beautiful surprise. To all of you who took time out of your very busy days, I appreciate it more than you'll ever know. You sounded like absolute angels and it was so lovely to see everyone. Evidently, Kara, Donny & Alan were all in on the surprise and they kept it remarkably well. I have never been serenaded before and it was a delightful experience. I am going to be trying a medication that helps tighten the stomach & intestine and will hopefully help to empty it better. Then I won't have such a feeling of fullness and maybe can eat. I NEED to gain weight! Also, I'll probably be looking at more pain blocks. Hope it all helps. Shawn, Jen, & Cooper coming home next week. I can't wait. I continue to pray for each & everyone of you. Have a beautiful holiday. Linda

Saturday, December 11, 2010

I'm back and it seems like I haven't written forever. I had not been feeling well for a long time. I have a lot of pain, nausea, etc. all of the time. Well, last Friday, everything got out of hand. I had been up all night vomiting & becoming increasingly weak so we went to Emergency. The usual dehydration, needing fluids, needing potassium, trying to stop the vomiting was going on. After 11 hours in ER, I was finally admitted to a floor. I had begged for a private room, but since I had to be monitored, there were no private rooms. My roommate was quite ill and required constant, constant care. However, she seemed to be quite hungry. She wasn't allowed to eat after midnight, so she sent her significant other out to KFC and they ate until about 11:30 p.m. The worst part of that was the fact that I was so nauseated and all I could smell all night were the remains of the KFC. The alarm on her IV pump went off continuously, but she could not hear it. So, everytime her alarm or mine went off, I had to call the nurse. They also gave her several units of blood throughout the evening which added to the confusion. At 1:00 a.m., they decided to put a catheter in her, so all the overhead lights went on. At 2:23 a.m., the nurses aide came in to give her a bath to prepare her for an 8:00 a.m. surgery. I actually thought it was a joke, a bad joke. As, I held my head in my hands, sick as ever, they were having a nice discussion in bed B. Then we had vitals every time you turned around. I asked them to keep our door shut because of the noise in the hall. but that just wasn't happening. Each time they would bang in and out of the room, I would crawl out of bed, drag all my wires, my infusion pump, and get as close to the door as possible. I couldn't reach it, so I clung to the wall and kicked my leg backwards to shut the door, almost falling a few times. Then, the nurse would come in the room to see why my heart rate was so high. Then around 4:00 a.m., my nurse drew blood from the mediport only after the lab had come in and tried to draw it from an arm vein. More vital signs, staff coming in the room looking for equipment, etc. By the time Alan got back to the hospital before 7:00 a.m., I was ready to lose my mind. The Dr. came in and wanted a CT scan of the brain to try to figure out the nausea. It was relentless. I couldn't go down for the scan at first due to the nausea/vomiting. Finally, a little later that morning, after several IV meds, I made it downstairs. The scan came back negative, I got moved to another room, got a bit of sleep, and got some relief from the sickness. I went home Sunday afternoon. Thinks were OK until I woke up at 2:00 a.m. Wednesday morning with the same symptoms. Back to the ER where I spent the day getting fluids, potassium, pain meds, antibiotics, & anti-nausea meds. I went home that day and am trying to stay away from the hospital. Friday, I had my follow-up chest and abdomen CT scan and I had to drink a bottle of barium. I prayed it would stay down and not trigger the nausea again. I got through the test. Dr. Goldstein called me Friday night and said there was no indication of metastesis. Yay! He said lungs have a lot of fibrosis, they're taking a beating, but seem to be holding their own. That's related to the scleroderma. Still going to physical therapy for frozen left shoulder. I am trying to get up and walk around the house every hour to regain strength. I go to Pittsburgh Wednesday to see scleroderma Dr. This is quite lengthy, but I hope it updates everyone. Take care, Linda

Wednesday, November 17

Hi Everyone. Keeping busy with Dr. visits. I went to pain management where I received several trigger point injections in my back & side to try to alleviate some pain. Unfortunately, they gave me a very strong pill in the recovery room which made me sick for two days. I know they are trying to take away the pain, but I just can't tolerate the strong painkillers. Today, I went to the shoulder surgeon who injected my shoulder. I now have a frozen shoulder because the pain was restricting my activity. I will start physical therapy to try to regain some movement. They don't want to be very aggressive due to fracture risk from the osteoporosis. I'm going back to Pittsburgh in December to see the scleroderma specialist. They have created a scleroderma research center at UPMC, all of the latest info on scleroderma. I sure hope they have something out there that might help me. Carole, thank you for the gift card. I miss you & everyone in Surgery. Happy Thanksgiving, Linda

October 11, 2010

Everyone has been asking me to update the blog so I'll do my best. I went to the oncologist on Friday for a routine check-up. Everything seemed okay. I had blood work that was mostly normal and will just continue with follow-ups, scans, labs, etc. I will get my mediport flushed once a month to keep it patent. If all goes well and everything stays negative, I'll get the port out next April. I also went to another doctor today and he ordered all of the labs and a dexa scan to see if I am a candidate for Reclast. Since I am breaking bones by simply coughing, something needs to be done. I also have an ultrasound ordered for a questionable area in the abdomen, but I refuse to believe it could be anything. So basically, continuous tests and waiting for results. I'm still having LOTS of pain and losing weight. Anna, thank you for the cookies. They look delicious. We enjoyed visiting with Gary. We went to see Karlynn cheer tonight, but the game was called about 10 minutes after we got there because of the storm. Have a good evening, Linda

September 20, 2010

The surgery went well although I was quite sick for 24 hours. The pain seemed to have eased some and then I had some really bad coughing spells. I thought I might have broken something else because the pain got quite intense again. I had a x-ray at the Dr. today. He felt an MRI would be much more definitive, but I am not ready for another one of those right now. So, we are just watching the pain level for now. Janet & Carole, thank you for the gift cards. Jane, thank you for the mums-they're beautiful. I was wondering where they came from. Mo, as always,thanks for everything. Linda

September 8, 2010

I went to the Dr. yesterday and after having more X-rays and an exam, another fracture was discovered. This one is right above the other. The thoracic vertebrae at level 6 and 7 are fractured. I have significant osteoporosis from the events of the past year and at a big risk for broken bones. I will be having surgery at North Side Hospital tomorrow morning at 6:30. I'm still waiting for the nurses to call me with an arrival time but I am fearing it will be around 5:30 a.m. Dr. Pagano will be doing a kyphoplasty treating the two different fracture levels. Basically, they create a pathway into the bone with a hollow instrument, insert a balloon through this and inflate it to raise up the collapsed vertebra. Then the balloon is deflated, removed, and the cavity is filled with cement to support the bone and prevent further collapse. He'll do this on both sides of each fractured vertebra. I am really hoping this eases some of the pain I have been having. It's not fun having so much pain. I'll update after surgery.

September 1, 2010

The saga continues. I have been having an incredible amout of pain over the last two months and it was baffling to everyone. When I went to the pain management doctor, he ordered an MRI which I had done on Monday. He just called me this morning to tell me I have a compression fracture of thoracic 7 vertebrae. So now, I will be having surgery for that. The good news...no evidence of metastasis. The surgery should be minor if it's what I'm thinking. Of course, I still have to see the orthopedic spine surgeon. Linda

August 28, 2010

Time for an update. I have been having major pain for a long time so now I am seeing a pain mangement doctor. I saw him the day before we were going to Charlotte and he ordered some new & stronger medication. Unfortunately, I couldn't tolerate it and was nauseated the whole time I was on it. The drive to Charlotte was not pleasant as I was lying down sick in the back seat for eight hours. It was great seeeing Shawn, Jen, & Cooper, though. Anyway, I will be having an MRI on Monday and then make some decisions for pain injections based on the results. Maureen, thanks in advance for coming with us. I know Alan enjoys your moral support. Carole, thanks for the gift card. Your cards always make me laugh. I especially liked the amount of people you vacationed with...hilarious. Shawn, Jen & Cooper are coming home next weekend. Yay! I got to go to two of Karlynn's games and watch her cheer. She is just beautiful... and I am NOT biased :) So, this week is fairly quiet, some blood work, an MRI & a visit to the oncologist on Friday. Gregg, it was good to see you & Debbie. I hope your flight back to Texas was smooth. Stay cool down there. Happy Labor Day, Linda

Thursday, July 29, 2010

Well, it will soon be a year that I was diagnosed & not given much hope at all. I was thinking back over the past year and taking inventory. This list is not complete, but lets you know a bit of what went on last year. I had 5 surgeries, 5 emergency room visits (one by ambulance after an allergic reaction to chemo-I actually had 2 of those!) & 3 inpatient hospital admissions. I was examined, poked, prodded, etc. by the following: 3 cardiothoracic surgeons, 1 thoracic surgeon, 3 cardiologists, 2 general surgeons, 3 pulmonologists, 2 nephrologists, 1 radiation oncologist, 1 medical oncologist, 1 general practitioner, 1 audiologist, 1 gastroenterologist, 1 orthopedic surgeon, 1 neurologist & 1 rheumatologist.
I endured 19 weeks of chemotherapy, 6 1/2 weeks of radiation therapy and had 10 additional trips to chemo for replacement fluids for severe dehydration.I had 6 CT scans, 1 PET scan, 1 MRI, 1 bone scan, 2 ultrasounds, 3 2-D echocardiograms, 2 Holter monitors, EKG's, chest X-rays and countless lab tests. I had arterial blood gases, pulmonary function tests, several blood transfusions, an esophagram, esophageal transit study, gastric emptying test, & 3 rounds of physical therapy. I have significant hearing loss in both ears and some kidney dysfunction due to the chemo. I lost a lot of hair, had more pain, nausea & vomiting than imaginable and still have some shortness of breath. My esophagus doesn't work right and the lower esophageal valve is eroded away.
BUT, I'M STILL HERE!!! It takes more than that to stop me. Who needs 2 complete lungs anyway? I can still take walks with Alan & play with Karlynn & Mackenzie. I can brush their hair and watch Karlynn cheer. I can look into Karlynn's beautiful blue eyes as she reads to me. I can watch Mackenzie's sweetness & never ending energy. I can talk to Kara, Donny, Shawn & Jen anytime. I can enjoy my 2 grand-dogs Cooper & Marley. Smelling the fresh cut grass, looking at the clouds in a gorgeous blue sky, enjoying the flowers, talking to friends and family, going to church and doing my crossword puzzles...what could be better than that? My next goals are to watch Karlynn cheer at her very first game and a trip to Charlotte next month to see Shawn, Jen & Cooper. Can't wait, Linda

Thursday, July 22, 2010

Hi Everyone. It's been a sad week. My brother-in-law has been quite ill and passed away Tuesday evening. He fought a long and courageous battle and never complained. We were able to be with him and help take care of him and I am so thankful for that. So, this will be a hard weekend for my sister and we will be there to support her. Last Saturday, he (my brother-in-law) asked if Shawn & Jen had brought Cooper home with them. He loves dogs and was able to see Cooper one last time. Karlynn was so sweet and said they would bring Marley (their dog) over to visit him as well. Linda

July 10, 2010

Hi Everyone. I went shopping today-that was exhausting! I am looking for a dress that actually fits. So many of them have little straps and my mediport was sticking out like a sore thumb. Kara was practically dressing me, I was sooooo tired and out of breath. Finally, the LAST one I tried on was good. I told her that was the one, let's just get it! I had to go out and sit in the car while she paid. She's a lifesaver. That's something I never had to do-plan my wardrobe around a port. Oh well, another little challenge. Anna, thank you for the delicious dessert & gift card from you and your family. That was so kind. Dr. C, the flowers are absolutely gorgeous and we love them. Tomorrow is Kara's birthday. There is nothing I could ever give her that would ever come close to what she has given me over the past year. Shawn, Jen & Cooper are coming home next week and I am so excited. They, along with Alan, never gave up. So many of you would not let me quit during my darkest hours. I will always be grateful. Love, Linda

July 8, 2010

The results of my CT are back and there are no new tumors! There was something that I did not tell very many people. When I had my follow-up scan in April, it showed two new nodules in my right lung that hadn't shown up in January. They were microscopic at that time and we had to just wait and see what happened. They were too small at the time to treat. We were all so anxious for the last three months. It was terribly difficult to think there might be further metastasis. Every new pain caused more nervousness & suspicion. It is safe to say that we were all pretty much a wreck. Through it all, the cards kept coming, inspirational messages and phone calls, and the prayers never stopped. Alan & Kara were with me at the Dr. for the results and Shawn was standing by his phone in NC. As we sat in the waiting room, the Dr. was behind the glass in the office giving us a huge thumbs-up. I must have been staring into space because the next thing I knew was Alan & Kara were both nudging me and telling me to look at the Dr. I immediately grabbed their hands and couldn't believe I was about to get good news. Once we went into the examining room and he came in, he said the nodules had disappeared. There was really no explanation. I know what it was, a miracle! All of your prayers were answered and I am so grateful.Linda

July 5, 2010

Hi Everyone. Tomorrow is the day that I have been thinking about for the last three months. It's CT day. The nephrologist wanted to admit me to the hospital prior to the test for IV fluids. He wants me totally hydrated to stop any further damage to the kidneys from the IV dye. I bargained with him not to get admitted. I asked him how much I needed to drink today to thoroughly hydrate myself. He told me 2,400 cc's. So here I am on my fourth eight ounce glass of H2O. I have six to go! Mo, thanks in advance for coming tomorrow and always being there for us. Carole, thanks for the gift card. Shirley, thanks for the endless succession of inspirational messages. The last group you sent was beautiful. I took it to the hospital and gave it to my brother-in-law & sister to comfort them. He is gravely ill. Teri, I never saw a card like the one you sent in my life-you looked long & hard for that. As always, I want to thank everyone who never forgets about me & my family. Praying, calling, & showing love & compassion in all you do. My angel network is a great one. Linda

July 1, 2010

The nephrologist is slowly decreasing my magnesium & potassium supplements. I thought he might discontinue them totally, no such luck. He was more concerned with the weight loss. So, now my "food patrol posse" is at work again trying to feed me all the time. Ugh! I've been trying to get out more, walk, be more active, etc. I'm still plagued by pain and shortness of breath. Next week is a very stressful week. CT scan of chest & abdomen on Tuesday, visit the pulmonologist on Wednesday, and appointment with the oncologist on Friday. It's very nerve-wracking waiting for these scans. I just try to keep busy and go day by day. I am going to hand therapy now which is going well. The incision is healing nicely and I have most of my movement back. Enjoy the Fourth of July. Linda (Heather, your baby is such a sweet little guy.)

My blog is finally working

Welcome back, everyone. I have been unable to get on my blog and I know many people have been having problems viewing this. Kara diagnosed the problem, the background on my blog was keeping the site from loading. I hope it's OK for everyone now. A quick update...I had my surgery on June 11th. Everything went well. Basically the esophagus is not working and the valve that should be at the bottom of the esophagus is worn away. This is due to the scleroderma, and helps to explain my difficulty eating and digestive problems. The surgery on my finger went well. I went to get the stitches out this morning. The Dr. said everything looked good and I started on my hand therapy this morning. My worst problems at this time are shortness of breath and pain. I go back to the nephrologist tomorrow. My magnesium & potassium levels were drawn on Monday and they look good. Hopefully, I can decrease or discontinue the supplements. As always, I thank everyone for the continued prayers & good wishes. I appreciate them so much, Linda

Memorial Day Weekend

Just a quick update. I am having surgery on my finger in June. Those lesions from the scleroderma are eroding through the skin, hurting like crazy, and look really bad. At the same time, I will be having an EGD on my esophagus. I've been having a lot of digestive problems, again from the scleroderma. So, hopefully, I'll get some relief from these major annoyances. I have been taking short walks up & down the street with Alan. It feels great to have the strength to walk. I also went to picnics over the weekend & my energy & endurance was greatly improved. Hope everyone enjoyed a safe & healthy weekend. Linda

Hi Everyone. We have been having a lot of trouble with this blog. Kara is working on it. If you were able to pick up the comments on the last blog, you saw the MRI was OK on my back. Yay! I am preparing for surgery on my finger with Dr. Schwendeman, and an EGD with Dr. Marina. I'm hoping they can coordinate things and I'll just get one anesthetic, etc. Have a good day. Keep cool, Linda

Hi Everyone. I think it's time for an update. I have been going to physical therapy and I do think it's helping. My legs are much stronger, I can walk further distances and I don't feel as weak. I had the second 2-D echo of my heart and it still showed a small amount of fluid around the heart. The cardiologist said he didn't feel it was causing any symptoms or compressing the heart. He said it would be too risky to put a needle into the sternum and try to withdraw the fluid because it could lacerate the ventricle. He also said they could do a pericardial window in surgery, but I said NO WAY! That's not going to happen-sometimes you just have to say no! I also have been having a lot of pain in my back so I had a bone scan on Tuesday. After I got injected with the radioisotope, I had to drink water for two hours prior to the actual scan. I went to surgery and got to see everyone while I waited. It was really great to see everyone. The scan took about an hour and the Dr. called and said there were two spots on the thoracic spine that they want to double check. He thinks it is degenerative arthritic changes. Now, I have to have an MRI. Then, I'll be in limbo once again just waiting for results. That is very difficult. Hope this gets everyone up to date. Thank you for the prayers-you are all very special people. Linda

I've had 2 sessions of physical therapy. They were spent mainly concentrating on proper breathing techniques and some very gentle strengthening exercises. Basically, I wasn't using my left side of my chest to breathe. It is so sore, I was favoring it so much and also developing a bit of a frozen shoulder. We are working on range of motion for the left arm. My therapist said I was breathing much better than I was on Tuesday. I am practicing breathing from the diaphragm and utilizing all of my lung tissue available. I thank everyone, once again, for the beautiful cards and prayers that just keep coming. It means so much to me. Carole, thank you for the gift card. Happy Mother's Day! Linda

Hi everyone. I haven't written anything because I have been so miserable. I have a repeat 2-D echo on Tuesday. Dr. Scavina said minimal fluid is around my heart and we have to recheck that. I also start physical therapy on Tuesday for strengthening and trying to build my body back up. I am extremely weak, very deconditioned. I'm on some new medication that is really rough. Nausea, headaches, fatigue. Hopefully, it gets better and also helps to stimulate my appetite. The weight loss continues. I was always wanting to lose weight, but this is getting to be ridiculous. I never thought it would be so hard to just walk around the house. I am just exhausted after doing so. Have a good weekend, Linda

Update from Kara

Hi everyone! I know it's been a while since my mom has posted. I just thought I'd let everyone know what has been going on: ... absolutely nothing. :) Mom has been taking it very easy. She hasn't posted because there really hasn't been any change or anything new to report. We are currently working on reconditioning her body. Her cardiologist told her that although there is no damage to her heart muscle, that it is as if she has been in a serious car accident which caused severe trauma - and she will have to rebuild her strength. She has to re-train her muscles to utilize oxygen more efficiently so that her heart does not have to do all the work. He mentioned cardio-pulmonary rehab, which I think would be a good idea. In the meantime, she is trying to move more - walking laps around the house, etc. Thank you to Karen C. for continuing to come over and draw blood -- we are thinking of you and praying that all goes well at your next appointment.

The cardiologist called me the other night and said the 2-D echo looked basically normal, he wants to recheck one thing in about 3 weeks. The Holter Monitor looked okay. There is still no explanation for the racing pulse and shortness of breath. I am incredibly weak and trying to walk around the house to gain some strength. They can't seem to find a reason for these problems. I have been wearing a Lidocaine pain patch over my rib fracture sites, but I question if that is really helping. I had really hoped to be feeling much better at this point in time, but trying to remain patient. Linda

Thursday

Well, the day of rest from Dr's. didn't quite happen. I got deathly ill from the CT prep and was violently ill all Monday night. I ended up at chemo Tuesday morning and got my usual...4 hours of fluids, steroids, anti-nausea drugs. I did feel better after that. Wednesday, I went to cardiologist. He is trying to figure out what is making my heart race so crazily. One theory is the chemo may have damaged the heart muscle. I hope that is not the case. I had a 2-D echocardiogram yesterday and they put on a Holter Monitor for 24 hours. I am going up to NSH to have it removed this a.m. Now, I have to wait to hear from the Dr. Let's hope the heart looks good. I might be running out of things to go wrong! Linda

Monday

I spent the day at NSH today. I went in at 8:00 a.m. because the nephrologist wanted me to have 5 hours of IV fluids prior to the CT scan. I just had a scan with dye last Wednesday & we're trying to keep the kidneys protected. After two unsuccessful attempts at starting my IV, I told the nurses not to try anymore. I called surgery & they sent one of the nurse anesthetists to start the IV. First try-no problem. So, I got my fluids and then had to start drinking Gastrografin (contrast medium for the scan.) I was supposed to drink 6 glasses between 12:00 and 2:00. If you have followed this blog, you know how difficult & disgusting that is for me. I took a Zofran & did what I had to do. Ugh! Anyway, The scan was very quick, I was then allowed to go home. We left the hospital about 3:00. A very long day for a 5 minute CT scan. Tomorrow-no doctors! Wednesday, I have to see a cardiologist for this racing pulse I have and I go to see the lung surgeon's partner. Hope everyone had a lovely Easter. Linda

Wednesday

I have been having an increasingly rapid pulse and shortness of breath. I called the pulmonologist today & went in to see him. He thought there may be a pulmonary embolism. I ended up at NSH for a CT scan of chest and ultrasound of the legs. They were negative for clots. He's supposed to call me back tonight or tomorrow to see what's next. Still have a very rapid heartbeat and shortness of breath on any exertion. Going to nephrologist tomorrow & CT of abdomen on Saturday. They couldn't do it today because they didn't want to wait for the prep. I would have liked it to be all done together, but just didn't work out that way. Linda

Friday, March 26, 2010

I went in to get fluids today, along with steroids & anti-nausea meds. I was feeling very weak, tired, fast pulse, short of breath on exertion, you name it. My Dad took me so we had a nice long visit at chemo (all 4 hours of it!) I asked my nurse when I would feel better. She said anywhere from 6-8 months. Although the drug leaves the body sooner than that, the effects hang around forever! The drugs all have a cumulative action, so their effects just keep building & building in your system. Now that they have worked their magic and practically did me in, they can start leaving any time now. Good riddance. Shirley C., thank you for your constant stream of inspiration. Carole T., thank you for the gift card. Karen L., thank you for your loyal following on the blog ~ and Happy Belated Birthday! Tonight, Karlynn & Mackenzie came over...the best medicine of all! Linda

March 22, 2010

Very hard to believe.....after going through chemo since last summer and into the fall, then beginning again in December and finishing up in the spring....I am done! I went through every season having chemo. It felt incredibly long to me and it was incredibly difficult. For everyone who tells me it went fast and they can't believe I'm done, "No, it was NOT fast, it was horrendous." If I didn't have my family & good friends, I never could have completed this. It was a monumental challenge and I JUST WANT TO FEEL BETTER ONE OF THESE DAYS! I would like to stop taking Zofran around the clock, being in a constant state of exhaustion and nausea. OK, I'm done complaining. I want to send condolences to the Grunenwald & Lalama families. I am so sorry about Moosie. Kara, please get better...I need you.
Linda

YOU DID IT, MOM!!!!!!

We are so proud of you! Congratulations on being DONE with CHEMO! YEAH!!

Sunday, March 21

Well, it's hard to believe, but tomorrow should be my last chemo. As long as my red & white blood cells are sufficient and the platelets are high enough, it will be a go. I am so ready to be done with this. I'm about maxed out on feeling miserable. Tuesday, I went to the audiologist who confirmed significant hearing loss in both ears. (I knew that!) He also said he does not expect it to come back. Thursday, I went to the Dr. because I was coughing up junk (I won't elaborate) and had a fever & chills. Now, I'm on one more med.-just what I need. Kara's still miserable and now has pinkeye. It's been a week since I've been able to see them. After I washed my hair today, I left a nice little pile of hair in the backyard for the robins to feather their nests. They could use it more than me :) Wish me luck tomorrow, Linda

Tuesday, March 16

My counts were adequate for chemo yesterday. Next Monday is my LAST treatment. I can hardly believe it. It has been such a long, long & difficult journey. However, the end is right around the corner. I had a long talk with one of my nurses yesterday and she really improved my mental outlook. Last week was a week that I was floundering. Yesterday was Shawn's birthday & I was remembering the time we went and surprised him down in Charlotte. Not in the cards for this year. Kara, I'm so sorry you are so sick. I wish I could come and take care of you. Hang in there. I can really sympathize with the nausea & vomiting! Try to rest. Everyone else, enjoy the sun. Linda

Saturday, March 13, 2010

We had a bright spot this week looking forward to Karlynn's birthday party this afternoon. Kara had already rescheduled it several times and this seemed like a good week because I had a break from chemo. It was going to be a very small family party. Well, Thursday, Karlynn had huge red circles around her eyes reaching up to the eyebrows and down to the cheekbones. Kara took her to the pediatrician and she has pinkeye. She had no itching or redness of the eye itself, but the surrounding area was red & puffy. Of course, with the highly contagious nature of pinkeye, the party was cancelled and the Riccitellis are isolating themselves for at least 24 hours. The Dr. said she had to be on the eyedrops 24 hours before she was safe to be around. Another strange phenomenon I have been experiencing is scalp pain. It feels like every single one of my hair follicles is aching. My hair did thin quite a bit so I hope this isn't another weird thing waiting to happen. My brother-in-law is taking me to chemo on Monday and after that...just one more treatment. Yay! Dr. C., thanks for the flowers-they are gorgeous. Linda

Saturday

This turned into a BAD week. I got sick Wednesday evening-GI problems, tons of nausea/vomiting that went on for hours & hours. I was so weak by Thursday morning, I could only get up to the bathroom & then back to bed. I ended up in bed for 36 hours, weak, dehydrated and in pain from all of the vomiting. Of course, I couldn't keep anything down to take anything for pain. Karen C., you were a lifesaver to come over and draw my blood. I never would have made it to the lab. Friday, I went in to UPMC and had 4 hours of intravenous fluids, anti-nausea drugs and steroids. Anyway, I am out of bed now and trying to eat so I can take my potassium & magnesium. As always, I keep telling myself this won't last forever! (Sometimes it seems like that.) Carole T., if you didn't see my other blog, I wanted to thank you for the gift card. I have such wonderful friends-I'm very lucky. Linda

Tuesday Morning

My counts were good enough to receive chemo yesterday. I was quite exhausted after. I also got the shot of Neulasta. I am definitely feeling the results of that. Especially the femurs, hips, ribs, arms & lower legs.
I just took a pain pill & have my trusty heating pad on. Still getting blood drawn twice a week for potassium & magnesium and taking those supplements three times a day. Next week is my "off" week from chemo, so hoping to regain a bit of energy by the end of next week. That's my latest info. And Carole - thank you for the Handel's gift card!
Linda

Last day of February

Good riddance to this month. Yesterday, we were able to go to Kara & Donny's for awhile. It was nice to go, but I was sooo tired when we got home. Tomorrow, I will see if my counts are high enough for chemo. If RBC's, WBC's & platelets are reasonable, I will get chemo followed by a shot of Neulasta to bring WBC's back up. Then I have a week off and then two more chemo treatments. If counts are bad, we drag this along even further. (Can you tell I'm getting fed up?) So, I pretty much take Zofran every day so I can eat to keep my Potassium & Magnesium levels high enough to stay out of the hospital. Gregg, I hope your flight back to Texas was uneventful. I liked the conversation about flying (that would only come from a pilot!) Keep warm, everyone. Linda

Wednesday

Really exhausted & weak today...barely got off the couch. Karen, the flowers were beautiful. I called Marie to thank her. Maybe, you can tell everyone at OSC how much appreciated they are. Good night, Linda

Dr.s Visit Today

Well, I spoke with the oncologist today and we made a mutual decision that I can't tolerate the Cisplatin. The effects were too toxic to my body as I explained in my previous post. I also can't take the Carboplatin because of ear & kidney toxicity which I already have. So we will proceed with the Gemzar by itself. He hasn't really given this drug alone with my type of cancer, however with the results from the surgery, he thinks it will be beneficial. I have three more doses of Gemzar and once I complete that, Dr. said I will have received approximately 80% of the treatment. I get one week off to recover between treatment #2 and #3. It really knocks out the platelets, WBC'c, & RBC's. After that a shot of Neulasta (OUCH), then the last 2 treatments. Then, I think he said in eight weeks after chemo is done, I will get a PET scan and that will really tell us a lot. So, I am sure you know I am REALLY anxious to complete this ordeal. Thank you North Side Surgery friends for the beautiful flower arrangement. It looks lovely. It makes me think of all of you. Take care,Linda

Sunday

Hi everyone. I'm finally home after nine days in the hospital. I feel very weak and tired. I am still fighting the eating battle. The nephrologist explained that it's critical I eat to get the Potassium & Magnesium in my system. I am still taking supplements for both. In the hospital, they gave me huge amounts of these two, but they went right through me. I wasn't absorbing them intravenously because of the damage to the kidneys. My low point was the day all of my counts dropped. When my platelets were in the 40,000 range, my nose kept bleeding, and when I nicked my leg it wouldn't stop bleeding. The hemoglobin of 7.8 just exhausted me. After two units of blood, things did improve somewhat. My legs are bruised from the low platelet count. Tomorrow, I am seeing the oncologist and I have some big decisions to make. I know that I will refuse the Cisplatin, I can't tolerate that anymore. I also will refuse any other "platins." I just can't take any more damage to my kidneys or any more hearing loss. I have four more treatments left and I am in a quandary. I will pray for guidance so I make the correct decision tomorrow. This is totally off the subject, but I was amazed at the icicles when I got out of the hospital. Have a good evening, Linda

Monday

Day 8 in the hospital. The nephrologist was in and informed us that mom's levels are finally heading back in the right direction. He is still not sure if the kidneys will correct themselves, or if she'll need to be on lifelong supplements. I don't know how my mom is doing it ... Over a week in isolation in a tiny hospital room with a lovely view of the rooftop and some chimneys. We try to keep her company -- the girls and I during the day, when we can, and my dad after work. We just want her back home!

Another bump in the road ~ from Kara

I may have spoken too soon. This morning, her levels dropped yet again. Her doctor ordered a nephrologist consult. They will be checking to see if the potassium is wasting through the kidneys, or digestive tract, etc. Further testing will determine whether or not she will need an additional supplement or medication. Keep your fingers crossed that things will get better for her soon! Thank you for all your prayers!

Roller Coaster Thursday

Hi again, it's Kara. Day 4 of her hospital stay brought my mom some more new challenges and developments. Not only did her potassium and magnesium continue to drop, but so did her hemoglobin and platelets. This led to a blood transfusion - 2 units, and more magnesium and potassium intravenously. She is also taking potassium pills daily, crushed in applesauce. She has begun to keep food down, which is an improvement over the last several days. Finally, around 8:30 p.m., her doctor called her room directly and told her she could rest easy tonight -- all her levels were approaching normal again! Yeah! Finally some good news! I know this will help ease her mind. She has been quite discouraged lately.

Wednesday ~ From Kara

Hello again! Well, she is still in the hospital. Although they've been running potassium round the clock, her levels are just not rising enough. The nausea/vomiting were major issues -- she has been given phenergan, zofran, etc. to help combat the sickness. She is also having pain from her surgery, but is reluctant to add any more drugs into her already heavily-medicated body. Let's all keep our fingers crossed that her potassium/magnesium levels stabilize, and that she is able to eat something and keep it down, so that she can come home! Thanks for all your healing thoughts and prayers. And, a big thank-you to whoever plowed my parents' driveway, if you happen to be reading this. It was GREATLY appreciated!!

Monday Update ~ From Kara

Hello everyone. As many of you know, my mom has been having major issues maintaining her potassium (and now magnesium) levels. The cisplatin is really doing a number on her. Just this past Friday she was in New Castle all day, receiving fluids and potassium. By today (Monday) she was still not feeling any better. In fact, she was worse than ever. She made another trip back to New Castle for even more fluids and potassium. Her bloodwork today showed even lower potassium levels. They decided to admit her to the hospital (Northside) because she appears to need more than they can give her in an outpatient setting. So, she was in the ER from 4 to 9:30 p.m. She was then transferred to a room. My dad and I left after 10, and she STILL had not received her potassium. Once she finally does, it will hopefully make a big difference in how she feels. Also, she is discussing with her oncologist about discontinuing the cisplatin -- her body just cannot tolerate it. They would switch her to another, less harsh platinum drug. I will update again tomorrow. Please say a prayer for my mom. :) Goodnight!

Snowy Saturday, Neulasta effects, etc.

Well, I spoke too soon about the Neulasta. The effects kicked in about 24 hours after I got the shot. I had a lot of pain in my neck, lower back, hips, and especially my legs (femurs.) I also had a bad headache and was sick all day Thursday and Thursday night. By the time I went to therapy Friday morning, they took me directly back and started vitals. By the time Debbie had parked the car and walked in the office, they were already hooking up the fluids to the mediport. I had Kytril, Ativan, Decadron, Potassium and fluids. We were there four hours and just sat in the dark without the TV on, and Debbie & I talked occassionally. I was really sick yesterday. I had to lie down in the back seat to get there..haven't had to do that in awhile. When I got home, I was exhausted and slept for 1 1/2 hours. I can only imagine the Neulasta is working in there helping my white blood cells to grow & mature. Something is going on! Be careful if you have to go out today. Welcome to all my followers. I love hearing from you. Linda

Wednesday

I got the Neulasta today. So far, so good. The nurse said some people require Percodan for about a week following the shot. I don't think that will be necessary. I'm counting on Ibuprofen to relieve the pain. However, I don't know what I'm dealing with and hope I don't regret these words. I did find out today that my Potassium & Magnesium are really low. I have to get IV potassium on Friday again. There goes another four hours. I am also now taking potassium and magnesium. The magnesium gets crushed in applesauce and that's manageable. The potassium is a liquid that gets diluted in juice. It tastes horrible...like drinking salt water. This Cisplatin is really doing a number on my body-and I've only had two doses of it! As long as it works on any nasty little cells that might be lurking around, I'll deal with all the other stuff. I don't have much choice. Linda

Tuesday Success

I was able to receive my chemo today. All six hours of it. Although, my WBC'S and neutrophils were borderline..they were on the right side of the border to receive the Cisplatin. I got a large amount of anti-nausea drugs, steroids, & fluids prior to the chemo. I found out that they add Mannitol to the Cisplatin. That certainly explains the frequent bathroom trips. Tomorrow, Kara will take me back for a shot of Neulasta. Not exactly looking forward to that. A shot that causes bones, muscles, & joints to ache & pain. Also, as the cells reform & mature, you get pain in the sternum, hips, legs, arms, back, etc. Wow, what's left not to hurt? I would say my head, but that's hurting, too. My nurse said the chemo is working on the follicles and causing scalp pain. Now, this could mean my hair may fall out or stay in. I'm taking a wait and see attitude on that one. There's really nothing I can do about it, so I'll take that as it comes. I think this catches you up on my news. I will be going in on Friday for rescue fluids (and Potassium if it fell again.) Here's to orange juice, bananas, strawberries, baked potatoes, etc." Long live Potassium Rich Foods!" Linda

Monday night

Chemo tomorrow, it's the l-o-n-g treatment. Let's hope the counts are reasonable and we can proceed with chemo. I am so ready for this to be done! Linda

Thursday morning

Well, I got a call from UPMC and my potassium is low again. Tomorrow, I'll head in there for a 4 hour treatment of potassium, anti-nausea drugs, steroids, & fluids. That usually means I'll get through the weekend in good shape. The nurse said the Cisplatin often causes this potassium deficit. I felt like I was eating well this week. My Dad will be taking me tomorrow so this will be funny. I have a feeling he will get very comfortable in a recliner in the treatment room & fall asleep. I'm going to tell him he better not start sleeping too deeply or they may hook him up to some meds. If you know my Dad, you would know he could sleep through anything. Haha. Drive carefully today in the ice & snow. Linda

Tuesday...success

Well, I had my chemo today, even though it was "iffy" for awhile. I went in the office and the waiting room was just packed. I went back to the treatment room and had my blood drawn. I waited & waited for the results. My friend that took me was in the waiting room because he is a little squeamish around all the needles, IV's, mediports, etc. I asked the nurses to tell him if chemo was going to be administered today so he could step out for awhile. Forty minutes later, they told me my WBC's were borderline and they were running more tests. Finally, at 2:00, they decided I could have my chemo. In the meantime, two different patients were having reactions to the chemo...one mild, one severe. The man next to me got very pale, eyes rolling back in his head, BP dropping, pulse dropping, clutching his chest and having seizures. They called 911 and two different ambulance companies came. I was gathering up all of my stuff, unplugging my pump from the wall and trying to move out of the way. I knew they needed room for the EMT's, stretcher, Oxygen, monitors, etc. I felt like I should be helping! This, of course, delayed me even further. They kept apologizing to me and I assured them if anyone understood-I did, as this happened to me on my very first treatment. When they finally started administering the Gemzar, I was a bit nervous. The nurses stayed right by my side and everything was O.K. So, the next milestone is next Tuesday for my long treatment with two drugs. Hopefully, this drug today doesn't knock me back down and delay things next week. If all goes well, chemo next Tuesday followed by Neulasta injection on Wednesday....and then I will be HALFWAY THROUGH! Hope this has everyone up to date. Linda

Sunday afternoon

Hi everyone. It's a rainy & miserable Sunday. Alan & I are going for a ride just to get me out of the house. We try to go when he comes home from work, but by the time he gets home & we head out, it is usually dark when we get to our destination. Last week one night, we rode out to Lake Milton & all we saw was a dark frozen lake. Maybe, we'll try that one again today. Then, we'll stop to get something to eat (like a baked potato full of potassium.) Our Trailblazer probably thinks it's a restaurant since I'm not allowed to go in anywhere, we always eat in it. One day, I will actually be healthy enough to go inside somewhere among people. Yay! I can't wait. I'm hoping my counts come back up enough to receive chemo on Tuesday. Wish me luck, Linda

Tuesday-1/19/10 No chemo today

I went to get my chemo and after drawing the blood for my counts and chemistries, the counts were too low to receive chemo. My WBC's and platelets, especially were very low. The plan is to take another week off, get the Gemzar next Tuesday, and then the following week, the Gemzar & Cisplatin. After that, a shot of Neulasta which stimulates growth & maturity of white blood cells. Only problem with that-the bone, joint, & muscle pain and other side effects that come with it. Although, I am quite disappointed, I know we have to keep things safe. This will extend my treatment time. Oh well, what's a little bump in the road now? I've been up & down mountains! Linda

Friday night ~ aren't drugs wonderful?!

I spent four hours at UPMC today. I got my usual, Kytril, Ativan, Decadron & rescue fluids. Today, they added Potassium. I feel pretty good tonight, I guess that's relative to how I usually slog through my days. They really want me to try to continue with this Cisplatin. It is VERY strong, harsh, and rough. Although, it is a sister drug to Carboplatin which I had preoperatively-this one is called the "wicked sister." I had thought of asking the Dr. to cut back the dose but my nurses today really spent a long time with me and are highly encouraging me to try to stick this out. They said it is the "Gold Standard" of drugs for my diagnosis, my insurance policy against recurrence, etc., etc., etc. So, here I go again. Nine more weeks as of next Tuesday. Then I come home from chemo and make a huge X on that day on the countdown chart. This is going to be a long Jan., Feb., & March. Tomorrow, we are going to try to ride up by Lake Erie if I can tolerate it. Then we will get a Wendy's baked potato (potassium) to eat in the car. AAhhhhhhh, what an exciting day! I can't go in anywhere because of my counts so the SUV is our restaurant.  :)  Hope your weekend is exciting as mine. HAHAHAHAHAHAHA! Linda

Thursday night

As you know, I have been feeling terrible. I had some labs done today and as expected, my counts are all quite low. Platelets are half of what they should be, WBC'S & RBC'S are low. The most concerning thing is my Potassium. It is quite low. I have to go tomorrow for 2-3 "passes" of potassium. Each dose takes over one hour, plus I will get fluids and other meds. I will most likely be there 3-4 hours. I am glad to take care of this because I am hoping it will help some of my symptoms. Chemo is closed Sat. & Sun., and next Monday they have something going on so I wouldn't be seen until Tuesday. I would probably be in quite a mess by then so tomorrow will be a good day, I hope. Keep you posted. Linda

Tuesday night

I had the week off chemo to try and get my WBC, RBC, & platelet counts back up. I know they must be extremely low because I can barely hold my head up. My legs feel too weak to carry me and my arms are, also, very weak. I sleep for about 12-14 hours and struggle to get out of bed. Then, I make my way downstairs & start drinking water to avoid dehydration. Eating is a HUGE problem-weight continues to be an issue. Midway through the day, I have to go back to bed for a couple of hours. I showered & washed my hair & it was like running a marathon. Kara dried it for me, but will come back tomorrow to use the curling iron. Too much at once for tonight. I am still battling nausea. I keep switching my meds out trying to get the nausea under control. I go between Zofran, Ativan, & Compazine. Tonight, my ribs are giving me the vise-like feeling in my side, so I am taking a pain pill, too. The pain has lessened from a 10 to a 3-4-bearable.  I know this will pass. It's just very hard right now. I need strength, energy, pain relief, nausea relief, and an appetite. I'll also take some sunshine. Anyone have any of the above? Send it my way. So, as of today, I'm 1/4 of the way done with chemo. Sure is going s-l-o-w! Good night, Linda

Chemo woes

Very tired, very weak, battling nausea. Four hours of  rescue fluids & meds. today. All I want to do is lie down. No appetite. Temporary, right? This chemo course is MUCH tougher than the first. I am also having hearing issues-I feel like I'm underwater, my head feels totally foggy & fuzzy. My ears are buzzing & high-pitched sounds are distorted. That should all subside post-chemo. Karen, thank you for the Handel's bucks...very sweet of you.  Goodnight, Linda

Dr.s Visit Today

All went well. Everything going according to plan. My CT scan of chest showed NO changes, NO new disease. YAY! Next scans not for three months. I'll see surgeon again at that time. Alan & I ate at the hospitality shop at Jameson. He said he forced down many meals there feeling sad, worried, & anxious. So, today was a happy meal :) Another super thing, I am not nauseated today. I am going to keep drugged up on my anti-emetics all week & try to head it off. "A good offense is the best defense." Kara, love the pix of the girls and Siesta Key. You know that is a driving force for me to get back there. Can't wait! Linda

Two weeks down

Hi Everyone,  This is a picture of my oncology nurse, Tammy. I am covered with a throw that Shawn & Jen got me for Christmas. It is an exact likeness of their dog ,(my grand-dog), Cooper. They felt it would be comforting to me. It was. In this picture, I just had my blood work drawn and was waiting for the results before they hooked me up to my meds. The WBC was quite low, marginal. I had to wait until they did a differential and performed their calculations and decided it was safe to administer the chemo. My pre-medication consisted of: Aloxi 215 mcg. (anti-emetic that stays in your system for 5 days), Emend 150 mg. (anti-emetic), Ativan (anti-emetic, relaxer), and Dexamethasone 20 mg. (steroid.). I received about 1500 cc of 9% saline prior to chemo. I then received Gemzar (chemo), followed by Cisplatin (chemo). After this, I received another 1000 cc of 0.9% saline. Since the Cisplatin is notorious for nausea/vomiting, and with my history, they are being very aggressive with my meds.We were there for SIX hours.  I will take an Emend tomorrow morning when I get up and Thursday morning as well. This drug is supposed to be superior for post-op N&V & post-chemo N&V. I'm counting on it. I told Alan even if I am sick tomorrow, he has to drag me to the surgeon's appt. I have many questions that I am finally ready to have answered. So we came home & did our ritual of marking off another week completed in this 12 week journey. Now, I am hoping for a quiet night and uneventful week. I may not be able to sleep tonight due to steroids, but I barely slept last night due to nerves. Hoping to crash around 9:00 p.m.

Keep warm,  Drive safe, Linda

Good Riddance 2009

I believe that last year was the worst year of my life. Even before I got diagnosed, I was feeling terrible for months. Now, I just want to look ahead. I know that 2010 will be a super year. Once I recover from this last course of chemo, get stronger, & stop having so much pain, I'm going to celebrate. I have to gain my appetite back & gain some weight back. We are never content with things. I lost over 40 # since I got sick and now I just want to be able to eat & gain weight. Before, I always wanted to lose weight. AAGGHHHHH! I got new clothes for Christmas because nothing fits. I was using safety pins to gather the waistband of my pants! I did not make any resolutions. I just want to be healthy & well. Nothing else is important. To all of my loyal followers, those that comment and those that don't: you have been huge lifesavers. Some of you have just been so consistent from day one. You'll never realize how much you help me. I have so many angels in my life-my family, friends, neighbors, church members, co-workers. When I get through all of this-look out. I have a CT of my chest tomorrow @ NSH, six hour chemo on Tuesday @ UPMC Cancer Center, & lung surgeon appt. at The Lung Center on Wednesday. Such an exciting week. I'll try to post soon, just trying to keep positive on how I'll be feeling after that chemo. Have a great day & stay warm, Linda