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