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My Mom began her journey with PC in July of 1999. She had an abcessed tooth for which she was given antibiotics. The antibiotics in turn caused her to have colitis and after the diarrhea had cleared up she was left with a "nagging" left abdominal discomfort. In October, my parents came to visit me and my family. I could see that this abdominal discomfort was a bit more serious than we first thought..she had difficulty getting comfortable in a lying or sitting position, could not walk even close to the long distances she could earlier in the year and she had a very "stressed" and tired look about her which was very unusual. She would not admit she had pain..she has a very high pain threshold but I told her to see her Dr. when she returned home. (I am a registered nurse and presently work as Hospice coordinator for our area) She saw her Dr..they did routine blood work which all came back normal and scheduled an abdominal ultrasound which was done towards the end of October. The results came back showing a cyst on the left ovary and a "shadow" at the area of the tail of the pancreas. Her Dr. (who happens to be married to an oncologist) reviewed the situation and were "100% sure" what they were seeing was a pancreatic pseudocyst. I never did understand that as I thought pseudocysts were as a result of acute or chronic pancreatitis which she never had. At this point, if you didn't know she was being investigated for some health problem you wouldn't think there was anything the matter with her other than she looked tired. She had not lost any weight, her appetite was normal and she wasn't "sick". Sometime in mid-late November, a CT scan was ordered to further check out this pseudocyst and after waiting 5 weeks for the test and a further 2 weeks for the results we were told that she had a 12cm X 12cm mass on the tail of the other abnormalities noted. Now..they still felt it was a pseudocyst and said what they wanted to do was run some more blood work on her which they did in mid-January. All her blood work came back normal with the exception of her CEA level which was 200. This changed things drastically as it was now indicative that there was something going on that required more aggressive investigation. What was decided then was she would visit a surgeon and he would book her for surgery to attempt removal of the tumor, all or part of her pancreas, 2/3 of her stomach and part of her intestine. By January she noted that her appetite was diminished greatly, she had very little urge to eat and felt full only after a few bites. She had biopsies done of her stomach and they were normal. Now, on top of everything at the end of January she woke up one morning and her left leg was numb and blue looking and she was hospitalized for several days for treatment of a blood clot in her left leg. This was not the first time this had happened...6 years ago after returning from a trip to Ireland, she develeped a huge blood clot in her left pelvis and one in her leg..almost lost her leg and was on huge amounts of anticoagulants for a long time). During the second week of February she had CT scans of the abdomen and lungs signs of metastases and the pancreatic tumor was the same size only there was now shadowing about 1/2 way down the pancreas. Surgery was scheduled for February 25th. She was taking T3's for pain which she now experienced in her lower back, hips and abdomen although she still wouldn't admit it was pain..only discomfort. February 25th arrived and she ended up only in surgery for 40 minutes. Her surgeon went in with a laparoscope and found the cancer had spread to 4 places on her right diaphragm, a couple above her liver and some in her lower left pelvic region. In his opinion she was full of microscopic bits of cancer. This diagnosis was not a surprise to Mom (she is also a R.N.)or myself. My Dad thought she would die on the operating table from a massive bleed so when we were told by the surgeon what the outcome was he said he was greatly relieved that he now knew what they were dealing with and that he would still have some time with her. My brother was the most hopeful of all of us but at the same time I think he was also realistic about what we would be told. She came home two days after her surgery and in three weeks had an appointment with the oncologist. She was able to walk short spurts, around the block and her appetite was poor but she grazed all day on high calorie things and orange juice. We had home care and the palliative care nurse in to visit, make acquaintances and set things in motion for when we needed their help. She visited a hypnotist several times and every morning did her relaxation tapes so that she could clear her mind and be peaceful. Her visit to the oncologist was pretty non-eventful. He told her the only option he could give her was palliative chemo in the form of Gemzar. He gave her the pros and cons of going on it, told her of the side effects and that he felt, in her situation, it would give her 5 weeks of extra time should she decided to take it. She did not want to start anything at the time. Reason being: She had Hodgkin's disease 31 years ago when my brother was 18mths old and I was 4, it returned again 3 years later. She was treated with radiation the first time and chemo the second time and came very close to dying. This time around she could not get past the horrible memories of the brutal chemo of 30 years ago and what it did to her. She also wanted some quality time to spend with my family (her 2 grandchildren in particular) and with my brother and his wife without having the deal with the effects of chemo should she decide to take it. So..the end of March came and we spent spring break with her. By this point she was sleeping about 18 hours a day, not much appetite and starting to "waste" although she wasn't losing much weight. She had been taking the Tylenol 3's periodically for pain but they were constipating her something terrible so she did a lateral move to Darvon and they seemed to work fine. In April she had a dive and lost 13 pounds in under two weeks, had periods of faintness, lightheadedness and generally felt poorly. At the beginning of May she and Dad travelled to Victoria and spent a week in a rented house visiting my brother and his wife. When she returned home she decided to give the chemo a try..she didn't have anything to lose and felt she owed it to herself to see if it made a difference. She was very anxious about it due to her previous history with chemo but she went ahead and had her first made her very tired and she hurt allover like she had a bad case of the flu and complained of chest discomfort. On Sunday she was hospitalized for dehydration, came home Monday morning and Monday afternoon had gurgling in her chest and coughed up fresh blood and several clots. She was put back in the hospital until Wednesday morning. On Thursday she had her second treatment..did the flu like thing again and spent the next 4 days trying to gather enough energy to move out of bed into a chair. I had arrived back home by this time to help her out..she now had virtually no appetite whatsoever ( 2 bites of toast in a day was an achievement). Her pain was not under control either as she wasn't taking the Darvon every 4 hours as ordered so I got her doing that and we even went so far as to wake her up in the night however it was evident after three days of doing that that we needed to change our direction so off we went to the Dr. and we discussed going to MS Contin. She started out at 45mg in the am and 45 at night..slept for the first day and a half and then perked up. She told me she didn't realize how uncomfortable she had been prior to going on the morphine. Three times that week she complained of feeling "flighty" and clammy in the night..that was an inkling of what was to come because that Friday she vomitted up about 4 cups of old blood so my guess is that those "flighty" times she was actively bleeding someplace. On June 16th she was admitted to the Palliative Care room at their local hospital and she remains there today (July 15). She has deteriorated greatly in that time..she now has ascites, severe swelling/edema in her legs and feet, shortness of breath, low oxygen saturation levels (usually around 80 -82 on room air) so needs oxygen at times, she has absolutely no energy and looks like she is 100 years old. She is cachexic, her color varies from grey to yellow to green depending on the moment, her eyes are far far away and she spends most of her time sleeping. She is nauseated a lot more and they put her on Zofran today..had been on maxeran and haldol and it was working quite well. She is on increased amounts of morphine and oxycodone and it controls her pain very well..most of the time she says she has no pain. She teases me about that because when she would be talking about her "discomfort" I would tell her "Mom, that is spelled P-A-I-N!!!" and that's a standing joke at the hospital now. I spent a total of 5 weeks there and am home now for a week, talked on the phone today and she would like me to come home again which I will do.

Posted 07/15/2000 09:47 pm by Heather
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