Lori's
Journal
By Lori's Husband - Jimcs2 mac torrents
Main Page - Journal Pages: 1 2 3 4 5 6 7 8 9 10 11cs2 mac torrents
| July
23, 2004 - Morning
My wife Lori has been ill for a long time, 10 years we believe. After seeing many doctors over the years and having a couple of misdiagnoses, one as a skiing injury (she doesn't ski) and another as GERD, she finally started going to the Mayo Clinic. They have given a preliminary (correct) diagnosis in two and half days...something other doctors could not (or would not) do in 10 years.cs2 mac torrents A simple chest x-ray revealed the problem. None of the doctors she had seen over the years sent her for a chest x-ray. I am so angry about that.cs2 mac torrents They found a large mass in her chest. She has had a biopsy and we'll know the results today. It could be one of several things, with lymphoma and other cancers being high on the list. Of course, we're hoping it's just a benign tumor.cs2 mac torrents ________________________________________________cs2 mac torrents July 23, 2004 - Eveningcs2 mac torrents We did get a diagnosis today and can begin researching it. She's been diagnosed with a 5 inch diameter tumor of the Thymus Gland. We don't yet know if it is benign or malignant, we should know early next week. The doctor believes it may be malignant so we're preparing ourselves just in case, information online is kind of limited because it's a rare disease but we've found a few websites.cs2 mac torrents Lori is very upbeat. Her attitude is great and her outlook on fighting the disease is very high. She is in good spirits, and happy to FINALLY get a diagnosis. If it turns out to be malignant, I have no doubt that she will beat it. She is very strong willed and loves life. We feel that a positive attitude, lots of support from family and friends, and a good team of doctors is the key to her recovery.cs2 mac torrents ________________________________________________ This week is loaded with tests to determine the extent of her tumor. She had an Endoscopy this morning, (and the poor thing didn't sleep last night because of the pain, the mass is kind of like having a soft cantaloupe in your chest that is pushing against other organs and compressing them, causing her oxygen level and heart rate to be off as well) and she's scheduled for a chest MRI this afternoon and a brain MRI later this week. She also has an upper GI test, a couple of other "scopy's" of some sort, and some other things like heart and oncology consultations scheduled. We hope to have a final diagnosis and plan of treatment sometime this week.cs2 mac torrents ________________________________________________ Unfortunately, we received a diagnosis yesterday of malignant Thymic Carcinoma (cancer of the thymus gland). It is a genetically predisposed illness and an extremely rare form of cancer, a staging system for it has not yet even been developed. Apparently, everyone's thymus gland (part of the immune system) begins to regress and have less function as we approach adolescence. But in some rare cases, it does the opposite and grows into a tumor and can eventually become malignant and invade nearby organs.cs2 mac torrents We won't know if it is locally invasive (grown into other nearby organs, heart, lung, etc) until after the surgery. We also do not yet know if it has metastasized, spread through the lymph system to other distant organs.cs2 mac torrents She has an appointment with an Oncologist today and she's also scheduled for a bone scan. There are about 11 types of Thymic Cancer. We hope to find out today which one she has as that will determine her prognosis and treatment.cs2 mac torrents The Mayo clinic is incredible. It's where people go when nobody can seem to help them. Sadly, there are only 3 in the nation, we are so fortunate to live just 10 miles from one! I tend to lose it a little when I think about what would have happened to her if one were not locally available…the cancer had already advanced so far. I honestly don't think she would have survived through the year.cs2 mac torrents Nobody would do anything for her it seemed, no matter which doctor she went to, how often or how many. We were becoming incredibly frustrated. She didn't sleep at night because of the pain, her face and neck would swell up and turn red from the pressure of the mass on her blood vessels, she would have attacks that left her on the floor in some of the most severe pain crying for nearly 30 minutes at a time when all I could do was sit on the floor beside her and hold her until the pain went away. Her heart rate had become constantly fast at around 115 bpm, she was having problems breathing, she was on an almost all liquid diet because most foods would send her into another attack, and she was losing weight quickly. She was anemic and dealing with a near constant pain that felt like both a spear going through her chest all the way to her back and a heavy anvil on her chest. She would use a Bed Buddy (a sock like device filled with material that is heated in the microwave) on her chest and a heating pad on her back as often as possible, they would have to be so hot that they would cause burns on her chest and back, but for her the pain from the burns was worth it to get some relief from the pain of the mass. These are the symptoms reported to the various doctors she's seen. Did they ever take her seriously? I don't believe they ever did. I just can't find another explanation that fits.cs2 mac torrents ________________________________________________ Lori was finally prescribed some pain medication, morphine, from the oncologist at Mayo Clinic on July 28th. After all this time, all the months and years of suffering, now she finally has some way to relieve her pain. She's the type of person that doesn't handle pain very well. Many times I could tell she just wanted it all to end, in whatever way it would. There were times I knew she was ready to give up, because the pain with no end in sight was more than she could bear. But somehow she managed to keep going. Now, she finally has some way to battle the pain and can focus on beating this disease, and getting her life back.cs2 mac torrents She's had a lot of tests and procedures the last couple of days. We went to see two oncologists on Wednesday. One said he thought it was lymphoma at first. Then he said he wished it was, mainly because lymphoma is more treatable and because of the rarity and small amount of clinical studies available for thymic cancers.cs2 mac torrents Unfortunately, we were informed today that the cancer in its current state is inoperable. They want to try and shrink it, so she'll start chemotherapy on Monday for 3.5 hours and then the rest of the week for 1 hour each day. They say there is a 50/50 chance it will work. If it works after two weeks, chemo will continue on and off for the next 12 weeks. Then, if it appears operable, she'll heal for six weeks before having the surgery. The surgery is pretty major, it's the same procedure they use for open heart surgery, they'll have to split her rib cage to get to the tumor and they'll probably remove her pericardium (sac around the heart). The Oncologists said they didn't believe it was very invasive yet but wouldn't know for sure until surgery. They staged the cancer using a new "Thymoma" staging system, saying she was stage 3 or 4, but would stage her at 3 for the time being. They will stage it better after surgery. This helped a little for understanding the stage of the disease although the prognosis for Thymic Carcinoma patients is determined mostly by the extent of the invasion and not the stage. The Oncologists are ordering radiation after surgery and maybe more chemo as well.cs2 mac torrents She'll go in for some surgery on Monday to have a ported catheter installed under her skin so the shots are easier to give. It can possibly cause blood clots so they're putting her on Coumadin (blood thinner) for that.cs2 mac torrents We'll try to relax and spend some quality time together this weekend, people tolerate chemo differently and who knows how it may affect Lori. But she is well prepared for the fight and she has a lot to live for.cs2 mac torrents ________________________________________________ Lori has been on Chemotherapy since Monday and has handled it amazingly well so far. They've been giving her some great anti-nausea drugs.cs2 mac torrents They surgically implanted a ported catheter in her chest. That's what has bothered her the most so far, waiting for the incisions to heal. An incision was made near her jugular to insert the catheter needle and another incision in her chest to implant the port. This allows her to get chemo through the port instead of getting shots everyday and they can draw blood there as well.cs2 mac torrents She's had to change her pain meds since the doctor wants her to stay pain free. He has prescribed Morphine ER. Each dose will last much longer than the instant release morphine she was taking.cs2 mac torrents Monday she was given an infusion of the chemo drugs Cytoxin and Cisplatin and was sent home with a pump full of another chemo drug Adriamycin. She has to wear the pump for three days; it's a 24hr infusion of chemo. cs2 mac torrents Today they will give her Aranesp to increase her red blood cell count (she's anemic and chemo makes it worse). Tomorrow she will be given a drug to increase her white blood cell count - Neulasta. Then, she is off for two weeks except to go in for blood tests. In two weeks, if the chemo is working, she will go back for more treatments.cs2 mac torrents We have spent most of our days at the Mayo Clinic recently, between chemo and testing. That and a lack of sleep has worn me completely out, I can only imagine how Lori feels.cs2 mac torrents She has been given a total of 14 meds to take, some make her tired. The most expensive prescription to fill so far was Kytril (anti-nausea), costing about $2000 for 30 pills. The insurance didn't want to cover more than 12 of these pills a month, the doctor called them to explain that her cancer is so rare there is no long term precedence of a working treatment, the insurance company agreed to cover the 30 pills for $75. We could never have afforded them otherwise.cs2 mac torrents This is a list of
her current meds: OTHER: That's a lot of meds, but at least the medical industry is finally taking her seriously and giving her treatment. And so far she has tolerated most of the meds well, which I am so thankful for...the more she has to deal with pain and nausea the lower her morale could sink. Her morale at the moment is VERY high. Her only problem with them so far has been some pretty bad constipation caused by the pain meds.cs2 mac torrents The mass was discovered
so late that she now has complications. A CT Scan has revealed that
Lori has a partially collapsed lung with some fluid in it that may be
cancerous. She also has congestion in her liver because of the way the
mass is deforming her blood vessels and causing blood to back up into
her liver, this may also be why she has fluid in her lung but they are
not sure about that. She is now taking 3 mgs of blood thinner a day
to keep from clotting due to the compression on her blood vessels. It's
amazing she didn't suffer a blood clot before being diagnosed. |
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