Latest News - Cancer Journal of Maureen Kennedy
November 13, 2009
I finally got in touch with Kaiser's Wellness Program to start the stop smoking program. When do you want your quite day - tomorrow I said. We she would NOT let me quit when I wanted to about insisted I had to keep smoking for three more weeks so they could do their daily steps routine. I spent the next week really pissed at them making me spending money on cigarette I was trying to get off of. I finally get the prescription for the patches and come to find out they will only dribble them out to you at 2 weeks worth at a time. By this time at the third week I felt thoroughly manipulated and lied to, and they had no compassion or flexibility for someone like me who was undergoing chemo and couldn't physically bounce down for patches every two weeks. I had seen the doctor Oct 30 and the cat can results show no change in size of lymph glands meaning it wasn't doing any good so on the Nov 6th she was starting me on new chemo which is supposed to have more severe reactions. So Wellness girl called me Tuesday after chemo to find out how things were going and I was deathly sick and I said things were so devatasting that I couldn't hardly do anything with this chemo and I just couldn't even talk to her. I was on such a high in October, I felt I shouldn't have listened to her since I had patches here anyway and some how that rush and determination has slipped right through me. I feel depressed because of what they made me do, supposedly for my own good. And I spent $400 on cigarettes that I didn't really want. So I am giving up on the wellness people and just going to do it on my own again, hoping to build up my gumption and the attitude that I am DONE WITH THEM. (cigarettes) Some of their platitudes are just stupid, like calling myself a non-smoker. No - I just don't smoke is the attitude I want, accepting responsibility for all the years of abuse I did to myself.
In meantime I have just come off the most horribel 4 days of being sick and weak - so weak I could barely even turn over in bed. I lost 5 pounds from not wanting to eat, but gamely trying to drink ensure, eat jellos pasta dinners, etc. I could only stay up for 2-3 hours then back to bed for 2-3 hours then up and then down for 12. Somewhere in there I got the rash they were talking about all over my chest and neck or else it was heat rash from the chills I was having with no temp. I do have some old cortisone cream that help that. Then my temperature started climbing and almost got to the danger point of 100.4 (110.2 it was) So I gulped down a Tylenol and that seem to bring the teperature down. I was finally feeling a little better last night ans was able walk down to mailbox to see if I had bills to pay. I am still trying to figure out if I have the strength to talk down the trash cause it's heavy with kitty litter. The I have to see if I can get to store to pic up a few TV dinners, some lightbulbs and bread and lettuce. I am so sick of Kellie who want her tuna fish WATER, she doesn' want to eat the tuna fish, just the water from the can. I had started locking her out of my bedroom but she comes by the door and yeowls until finnaly she goes away. I think I am switching her to dryfood and water only, tunafish is to expensive to keep throwing it way
In October I worked on geneology of the Bonano family and finally had a wonderful breakthrough being able to get online copies of my step-grandarents petition papers to become citizens and found they came to US in 1898 through New York. I found the ship Grandpa came on and was able to get a copy of the original 1989 ship' manifest. Granma didn' remember her ship and the Ellis Island record had no listing o her with the various mispellings of her last name. It may well be the the kids came over in the care of another family so perhaps they are listed with another completely different name. There are thousands of ships I could search but that would be almost impossible. So I wrapped it all up in a document and sent it to cousin and will send him DVD of documents and pictures and problem never hear a word or thank you from him. My condolence car to him with note has been returned three times by the post office, first time I left off one number on his box number. I put new postage on it and corrected box number and sent it out again, and they returned it again - no reason why. I marked envloped clearly, new postage, correct addres, remail mail and they returned it again. Arggh
Oct 10, 2009 - Actually I haven't said anything, but I am trying to quit cigarettes . I am using patches I bought three years ago and which the companies say not to use. I went two days without a cig, then smoked last remaining one. Went two more days without and bought a pack and smoked three cigs, then 2 more days and finished the pack and 2 more days and then bought a carton. So I smoked 3 packs over 8 days when I would have smoked 20 packs (or smoked 60 cigs when I would have smoked 400). I have now finished that carton and am trying again.Today put on patch again but got so antsy I went to buy cigarettes and bought new patches and got a fantastic sale of $13.25 for nicoderm 21 mg patches. Was only able to buy 4 boxes at that price (regular price $52.99 a box) it's like God is saying you don't need those cigarettes after all and so far I have not opened the carton yet. So a carton here costs $48 (cheapest there is) when I had been paying $35 which had been mailed to me.
My uncle,the oneI had been trying to contact for some months died Thursday September24,2009. My cousin's wife called my other uncle the priest on that Sunday to tell him, and he called me on Monday. Cousin said funeral plans were tentative since he had to be out of the country. I called the funeral home and found there would be no viewing, no service at funeral home, no graveside service and only a direct burial on Oct 6 at 9am. I called my uncle the priest and discussed the arrangements with him, and we both feel it is odd. But Uncle Russ was a sorta no frills no fuss kind of guy and perhaps this is what he wanted, we don't know. We feel sad that we were not able to pay our last respects but as I said to uncle, the body is just a husk and we pay respects with the prayers we offer up to our Lord on his behalf. And that's about all we can do.I tell my sisters that they can do whatever they want with me, full funeral or cremate me and plant the urn in the grave plot I already purchased next to where my parents lay. Sometimes funerals are needed by the living for closure.
I received a wonderful gift in the mail yesterday. I had read about this website who made headwear and who were giving our free scarf or wrap for cancer victims so I contacted them. They have beautiful things and the colors are fantastic. Unfortunately they are pricey and as I said to them in an email prices I could not afford. The lovely lady Linda Rawlings who owns the business, The Finest Accesories , gave me achoice of anything I wanted and while my soul craved the turquoise and fuschia colors, I chose black and whitewrap as that is the majority of colors I wear. http://www.franceluxe.com/pc/L3083H/headwraps/index.html The wrap has at the bottom, a tiny fairy done in swavorski gems.With the wrap I also received a card signed by all the employees wishing me good luck - isn't that so touching? I called them heart-mates in my journey with cancer in my responding email. I have decided since I am still able to make beads, I am bound and determined to make them some lovely beads and wire wrap them for use as pendants as a thank you.
October 6, 2009 - Well, here is another "side" of me which is extremely rare - can only recall being like this three times in my life.
I had my chemo on Friday and have been sick ever since. Sunday I was a screaming crying virago as a downstair neighbor decided to park his car next to mine, which is right beneath my bedroom window, and pay someone to come and buff it. I run an air conditioner and a fan in bedroom when sleeping to try and block out alley noises but nothing could cut out the whining crescendo of the buffing which went on for hours. Finally I was able to get out of bed, put on a house dress and storm down stairs to face this wiry overly tatooed latino man (who looked like he was from the "hood" just like on TV) and scream at him that I was sick and I couldn't stand the noise anymore and that he didn't live in this apartment building and was stealing electricity from the apartment owner (by plugging into the laudry room). He was a mean scary looking guy but I was so upset I didn't care. I went to laundrey room and unplugged his cord and tossed cord out of laundrey room and then went to lock the door so he couldn't get in, when he just about laid hands on me (with me screaming I was gonna call the cops) but at last minute yanked the door out of my hands. I saw the caretaker there and went up to her crying meanwhile he plugged back in and started buffing again). I said I couldn't take the noise anymore, that I was sick and I needed to lay down in bed but for the noise. The downstair neighbor came out and said he would have him stop buffing. Caretaker said she gave permission to use of electricity. That incenses me because my rent pays for that electricity! It was a half an hour before buffing stopped, and three times I had to yell at him to get his stuff off my car as it was not a shelf for him to lay his items on it. (I found new scratchs on my trunk cover - deep -took the pain right off) BTW if downstair neighbor had parked in HIS spot, then I would not have heard anything and the cord could have reached being in his apartment. But because he is so fat, he wants to use the vacant apartment parking spot next to mine since I park so close to the garbage bins (to the detriment of my car having scrapped and hit them a few times) because previous tenants were so fat I couldn't get in or out of my car parking in my regular spot Then Friday while at chemo plumber came because of leak and caretaker let him in and stayed with him but he couldn't finish by the time I came home from hospital - so everything in my cabinets was all over the place and I couldn't use sink the whole weekend. I had to be up early Monday morning and it took another 3 hours for plumber to fix everything. Then I finally got to bed, slept for 8 hours, up for 4 hours of TV and back to bed sleeping for another 13. Finally today I feel like a human being again.
Got the electric bill - it was $242 for the one month of horrendous heat - thankfully with even pay I only have to pay $121. Hopefully we won't get another month that hot.
September 25, 2009 - Well I have been blasted on almost all the bead chat boards for not posting, so I shall pick up where I left off in filling you all in.
Sept 2 I went for chemo being the end of the second full month of treatment, and I had pretty bad (to me) reaction to it. It was another horrible long day as they usually are, and I was so fatigued . The next day I was completely drained also and did absolutely nothing. Then came the 3-4 days of feeling like I had the flu with every bone in my body aching as well as jaw and teeth. So for most of the month I felt poorly and did little and stayed inside from the horrendous hot days with my air conditioner running. I was so sad to discover my next door neighbors moved out (this is the fellow who has been so helpful to me). Practically the lst day there I was talking to her on walkway when I heard someone cleaning her bathroom. I asked her if she was paying her to clean, and she said no and I asked if she did cleaning. She sent the lady over to me when she was done, and the lady agreed to clean my apartment and kitchen for $50. When I told my sister about this, she blew a gasket and started screaming at me that I coud not afford that and all I did was sit on my butt all day long and couldn't do a little at a bit at a time? I asked sis, did you think I was kidding when I offered niece $100 to come over here and clean? I told her I had the money from a gift from a friend and that this was like a catchup thing - then sis calmed down and said she thought I meant to hire her on an ongoing basis. I said if she got things ship shape then I would be able to continue on doing a little bit at a time. So in advance of her coming I managed the energy to "clean" up some areas where I had just left piles of stuff, books on the floor, stained glass board on floor, clothing draped over chair, etc. So the lady comes and I ask her to start on kitchen. She is a short chunky lady looking like a barrel. I sat in the living room and all I could hear was her grunting ALOT. It got to the point I thought perhaps she was sick and told her to sit down and rest and gave her a drink. Then she tells me she was in hospital in Jan for a month with failed liver problems and a month in rehab learning to walk again, and that she has an 8 pound cyst on ovary that she had to go to hospital for a ultra dound the next day! Heck, she was in wors shape than me. Anyhow when she got done I gave her $60 (I really didn't have right amount in cash) and she gushed what a blessing I was to her to have been able to earn this month with which she could buy her medications next week and pay for bus fair to Martin Luther King Hospital. Seems she was unemployed living on general assistance renting a room in a house owned by neighbor's mother. After she left I inspected and had to shake my head in amusement. She was here for 3 1/2 hours. Her cleaning was like that of a 12 year old - in dusting she didn't remove anything but just dusted round items as they stood in place. She vacumed bedroom just the part I could see. She did scrub the bathtube but didn't do anything else cept sweep the rugs with a broom. But as I said to my sister, not everyone is trained to clean by my mom. But as I said she got most of the dust and that gone, and now is the fine tuning which I have been doing a little each day. So spending the money for a not tip top job relieved someone's financial stress and in the end was a help to me after all leaving my job much smaller to do.
I was feeling better last week before chemo and spent a couple of hours cleaning my glass room, glass rods come in different coefficients and really cannot be mixed together. So I have 90, 96, and 104 type of glasses. I have over a thousand dollars worth of 90 dichroic glass. I have been noticing the trend on Ebay for sales of glasss beads using dichroic, as the beads that are selling. The shift in the market can be fascinating at times. So I was sorting all my 90 glasses and rearranging them for use, sorting and putting into bags the shorts, and finding the dichroic scraps and putting them in a box. I even started making some beads and again the kiln is screwed up and trying to get it to maintain the right temp is difficult.
So I had chemo again 18th and wanted to see doctor - she was running 2.5 hours behind and said she only took me ahead of other patients so I could start my chemo. I had questions about my tooth being pulled and getting the flu shot. She was practically screaming at me again - she said Kaiser doubled her patient load and put her first patient as a first time cancer patient which took 1.5 hours for that patient alone. Anyhow throughout the screaming it seems that I should get tooth checked because if it was infected that was bad news, but that dentist could not do any blood work - no pulling or root canal without synchronizing with oncologyst and coumadine clinic. If I had to have it pulled it would mean I would have to be off chemo for some time. As for Flu shot , they would tell us when and where and it would mean being off chemo for a cyle.
My niece came down one day after school classes and helped me run some errands and go to the store. It was a hot day and I took my hat off in the car. When we got to grocery store we got cart and I just walked in and started down an aisle when all of a sudden I remembered I didn't have my cap on. The weirdest reaction occurred, I stopped and actually cringed down saying OMG I didn't have my hat. I felt like I was toally naked and as if I was trying to cover my breasts --type naked. My niece ran out to the truck and got my cap and we were able to continue shopping. I sure showed her a different way of shopping. I pulled out list and started telling her which things were on sale, but putting back somethings if I saw a diffferent brand a cheaper price. Pretty soon she was finding cheaper priced things for me. She learned not to take the first box out of freezing compartment because the door opening and closing often affected the ice cream but to reach for the back. When I asked boxer to put frozen stuff in paper bag because it retained the cold longer, niece said but you live just across the street. I said to her you never knew if you were going to be held up getting home and melted and refozen ice cream cones didn't taste good. She hauled everything upstairs for me which was a big help and then she left.
I hadn't heard from my friend Sue in the last two months and we must have been thinking of each other cause she emailed me and then called so we got together to dinner last night. She had this adorable plaid cotten hat for me that a friend of hers make for cancer patients, so I took off the hatt and put on the cap. I had brought her cut scraps of dichroic and other bullseye glass that she could use for her bracelets. We shared a coupon like we normally do and ate at Marie Callander.
So that's about it for now.
September 1, 2009 - Well it has been hot, hot, hot here with many days over 100 degrees. The Southland has a huge fire burning over 100,000 acreas of national forest and causing smoke and particulates in the air, even in whittier. The news and paper cautions all older folks, respiratory people (like me) to stay inside and run air conditioner to filter air which that is what I have been doing. My sleeping is all screwed up again after a wonderful two week period where it was normal. I sleep with a cap on my headbecause my head gets cold with air conditioner on, and then sometimes in the night I get so hot I wake up and take the cap off, so I am waking many times during the night. So I have been tired when I finally get up at about 4 pm and therefore I have not done much around here. One night I went to bed 5 times, tossing and turning for an hour before getting up and then trying it again an hour later. Unless you experience this you have no idea how frustrating it is and how utterly desparate you get wanting to go to sleep at a normal time. One night I tried every pill I had and it still wouldn't put me to sleep. According to scale I have gained 4 pounds which I didn't want to do, but at least that means I am eating OK. Today was the first time in over a week that I woke up feeling good, so I was able to go to store at 7pm when it was a little cooler and stock up on Porterhouse steaks! $3.97 a pound I just couldnt pass them up and so I got 6. That should help me when I get into my meat raveous carnivore urge for real red meat! LOL I was able to bring up half my groceries and just left the canned stuff in the car. Tomorrow I go for chemo again, just with the chemo nurse so I expect another bad and exhasuting day. A friend on a chatboard wrote us a note this week telling us that she is terminally ill with 3 weeks to 6 months to live, caused primarily by mold in her lungs from mold in her house in Arizona. I feel so bad for her and wonder if chemo could help kill the mold in her lungs, like it would cancer. Then I worry about my sisters house who has mold in their house, when they had carpeting replaced 5 years go throughout entire house there was mold in bathroom from illfiting shower door, and now with the mold in the garage and probably in the house when the carpeting got soaked- with BIL's breathing problems I just worry about them and mold. As for me I am deathly alergic to mold and can smell it.Going through SEATAC airport I could smell the mold everywhere in their carpeting and it just about made me sick. I guess that's why we had dehumidifiers in Minnesota running all the time in our basement, to prevent mold by getting water out of the air. Thankfully my two air conditioners pull lots of water out of the air here for me.
August 25, 2009 - I was able to go to the Annointing for the sick with the local parish priest Monday afternoon. I had a nice discussion with him on religious maters,and then we did confession where I confessed my sins.I did tell him about the abhorrent thought that came into my mind about suicide and he felt that was not a problem and really generated by the Tv shows I had watched. I also told him how I thought perhaps God's use for me was over, and he felt we can never know what God's plans for us are, and so we are to go on doing the best we can. I told him sometimes I didn't know if I didn't do things because I was really fatigued or because I was being lazy - and he said I needed to cut myself some slack. He said that several times. His penance to me was "to have no penance"because he felt what I have suffered already in this illness and life was sufficient and none further was needed. He annointed me with the Holy Oil on my hands, chest and forhead and layed hands upon my head asking for God's blessing and a return to health for me. I slipped him a $20 as I was leaving, and he demurred, but I pressed it upon him saying that even if he had no need for it he probably knew someone who could use it, and then he remarked, as it was, he had already given it away the day before, so he kept it. Priests done't make much money which is why we give them gratituies for their generosity of spirit in performing these services for us.
Well I have had some trouble still with nausea, and sometimes don't feel like eating because I feel filled up even when I haven't eaten. I continue to eat yoghurt and applesause when I feel that way. So far I don't think I have had any weight loss because of it. I did get a spurt of energy and clean three fourths of my stove from the stove top, under he top and down the front sides to the broiler drawer. That felt good as it was greasy and messy. You would never have known I used to keep a really clean house at one time. Now you can write your name in the dust on my shelves. Well little by little I will get to it - I will finish the stove, then the cabinents, then the floor, then start on the dust in LR. LR has been vacumned and 5 loads of laundry done and folded and put away -so things are getting done. I have to go to store this week because Tbones are on sale - and when they are on sale, so is porterhouse steaks, and I have that $100 gift from friend that I may spend on good steak to eat to keep my red blood cells up. I have been having trouble with a wisdom tooth that I have been babying for over a year. It's been "errupting" causing the flesh around it to be swollen and sensitive , and I seem to feel a crack in it at the base of the outside of the tooth and I feel it needs to be pulled. So I finally called the dentist office today and they won't do it unless oncology doctor gives the OK. I called and left message for doctor and nurse called back and said they would have to stop chemo treament if I had to have it done. I suggested taking an antibiotic just before and after it being pulled but she said sometimes the chemo undermines the effectiveness of the cantibiotics. My sis agrees when I complained to her about it. I don't have REAL pain, just discomfort because it is on side of face that I sleep on. I worry about the inbophren I take for it, because avastin and inbuphroferen have problems in causing intestinal bleeding in the stomach. I reminded sis of bad cold I had when I started chemo in12/06 and took antibiotics - she said yes, but this would be an open wound that needs to heal. So she suggests I just keep babying it till my chemo treatment is over - which may not be for another 4 or more months. I had the feeling that the tooth has infection and that perhaps this infection is what has drained down into the lymph gland on that side of my neck. If you have infection, wouldn't the white cells fight that rather than fighting thecancer? Anyhow I don't get to see the doctor till 9/18 and she is gone on vacation now - so we will see. Thankfully dentist takes credit card.
August 20, 2009 - Well time for another update. I had to cancel my appointment with the Priest for the Annointing of the Sick because I got sick about 3 hours before I was to go. Thankfully that finally went away and I was able to get down to chemo on Tuesday - and what another exhausting day it was. I left at 9:30 and didn't get home till 5:15pm. I had called on Monday to see if blood test was authorized on computer and was told it had not been authorized, which made me mad because I had hoped to get it done Monday to eliminate the hour's wait on Tuesday. So I had them send a message to the doctor's nurse/doctor to authorize it. I get there Tuesday and AGAIN there is no authorization for the blood test, so I have to wait a half an hour till someone authorizes the blood test! Then I go upstairs and am there at 10:15 for my 11 am appointment and the doctor is late so the visit visit is 2 hours later at 1:00 pm. The doc said she did not get my Monday message from her nurse, and showed me where she authorized the blood test three times on the computer. I don't know where that problem is ocurring, if the doc is imputting it wrong, or lab is looking in the wrong spot. Then I am put in the chemo room, which is the back room again and I am waiting for them to start the injection and 40 minutes later I am still sitting there with no needle in me! At this point I get irate and loud, and I demand to be put in the main room where there are more nurses. I also complain about the drug company representative who is there with their free luncheon for the staff which in my perception was helping to cause this backlog of patients. They finally start on my Chemo at 2:15 !!!!! which takes 2.5 hours. Then I drove home, swinging by for a burger which ended up giving me nausea. So Wed I didn't feel real well and just schlept around here - boy the days are soooo long when it is bright and sunny and you are in your right mind (not fogged up). Thursday (today) Bruce had to undergo surgery again, with this time they knock him out, for them to cut out the dead growth and scar tissue that kept causing so many problems with his rigid stent.
So Wed night I said the Divine Chaplet of Mercy for him, and somehow in recititng "For the sake of his Sorrowful Passion" over and over again I was struck with a revelation - That while we all knew he died for the sins of the world, that it was not only past sins, but present sins and future sins and that MY sins increased his burden and weight uppon his shoulders. Sins that I do, have done, will do had caused the need for him to atone for me! How come so late in my life this thought had come to me and why wasn't this taught to us along with all the prayers and other things we are taught in church? And yet try as we might, we cannot live a sinless life because without the mercy of grace we are bound to sin like St. Paul was when he said even he was not sinless. All we can do is try, and if we slip and forget and sin again, just keep trying again. Anyhow, Bruce called me today after his surgery to find out how I was doing, I was doing pretty good and even told him I was able to do three loads of laundrey today - most of which is folded if not yet put away. I did have bouts of nausea today and had to take pills and finally lay down for an hour. Oh yes,I found what I think is the fully book of St.Faustina's diary on free website, so I will continue to read it. I was able to remake my appointment with the priest today for this coming Monday and hopefully I shall be able to make this one. My sleeping continues to be good and regulated and not so erratic. I wonder if it is because I changed the way I was taking some of my medications, I take almost all of them in the morning now giving my body more time to assimilate them before attempting to sleep.
August 15, 2009 - Tonight I am just wiggling with pleasure! And what is causing this pleasure, just the simple fact that I had enough energy and will power today to clean my bathroom! I was also able to vacumn living room and sweep kitchen, as well as make myself a dinner. Now for most of you this would be normal living, but it literally has been a couple of months since I could clean my bathroom as I had just been too fatigued to do anything, except the bare minimum. This last week, little by little, I have been feeling better and finding more energy and sleeping regular hours- like going to sleep at 11-12 pm and arising at 7-8 am. My mind has not been cloudy and so instead of sitting around being in a fog, instead with the sunlight and clear mind I am getting bored and starting to think, what can I do today! Tuesday I managed to shower, get dressed, drive down to auto mechanic and get my car smog checked, drive to bank to make a deposit, drive to Triple AAAautoclub and get my car registration renewed and come home and was completely fatigued. Boy, was I ever thankful my sister had bought groceries for me for this month and I called her and thanked her again as the smog and stickers cost me $168 ! A funny thing happened to me Wednesday morning, I woke up and the first thought in my head was "It's time for me to stop being sick". Now I don't know if this was an affirmation thing or what caused that thought in my head, as quite frankly I have been sick literally for years. So I have been doing a bit more each day and feeling good about it. Maybe it's part of that cycle the doc had told me about chemo treatment before, that towards the end of the 15 days you would start to get more energy as I have chemo again next Tuesday. Today I have felt the best I have been in many, many months, and I hope it keeps up. Yesterday I called the parish rectory again about never having been called back and I have appointment on Monday for the Annointing of the Sick - which makes me feel good. My eating habits sure were erratic this week. Mon and Tues I was ravenous and Wed and Thurs not hungry at all. But thanks to having some small snack thinks like Lunchables ( which are really good) and Yoghurt and bananas I made myself eat and having TV dinners was the right thing for when I was not hungry. I was able to eat those things despite not being hungry, with just small nausea problem for which I popped a pill and then that was gone. Wednesday I made myself homemade chicken elbow macaroni soup which turned out very good and gave me lots to put into the freezer. Again, keeping in mind, that it is fatiguing for me to be on my feet a long time prepping the vegetables for the soupl. Thursday I finally felt like watching some TV and ordered three comedies from TV on demand - two were not very funny - I hate Val (Valentine Day) and New in Town. I had hoped New in Town would be funnier with the Minnesota connection and sayings but the story line was trite. However I did really enjoy Cofessions of a Shopaholic - so be sure to see that. Sis had brought some DVD's for me to watch, and I started watching Knowing with Nicholas Gage, but something didn't feel good about it and I skipped to the end and knew I just didn't want to watch it after all. Then I watch Ironman with Robert Downy Jr and it was delightful and different. That's the most TV I have watched sitting on the couch for a long time, otherwise I am hunched up over my computer watching old TV shows (and new ones) thru the Hulu website. Kellie likes it when I sit on the couch because then she gets combed out and can finally sit on my lap. Have you ever seen a cat yowling at you, stop in the middle of a yowl and yawn? That's what she did tonight. That's why she gets told No alot.
We had some good news this week - Sis's visit to eye doctor shows her eyes in perfect condition despite that episode of seeing everything in purple after her heat stroke. BTW did I tell you that I noticed my eyes last time I had chemo and my iris's became vertical like a cat's eye? I am going to mention that to doctor who I see on Tuesday and see if it happens again. My BIL had good news -finally got the result of a biopsy and the tissue still in his throat affecting his stent is dead scar tissue - so no new cancer growth there. His private Doc will not authorize a PET scan for him to see if cancer anywhere else, like my doc did. I can only hope that having caught this new cancer in the prestages before it becomes a tumor is helpful in erradicating it again. I have of course continued to pray and my mind was turned to the Divine Chaplet of Mercy and so I started reading more on the net about Saint Faustina, and I was reading Pope John Paul II's concecration of her as a saint, on the Vatican Webpage. For some reason I feel compelled that I should read her diary which entails her many conversations with God, but no one has it for free on webspages and it means I would have to buy the book.
Well that's about it for an update!
August 9, 2009 - Well today BIL and Sis drove down to help me out. When Sis arrived, she carried a big container and some bags full of supplies and goodies she felt I had to have from paper plates and utensil, instant cearals, nuts, trash bags, drinks plus some DVD's to watch. Then we went out. BIL did the driving. First we went to PO to buy stamps and mail a bill, then on to Staples to get cartridges for ink for printer ($71 now!!!!) and some duct tape and recordable CDs.Then on the to grcocery store. I had gone through reams of newspaper coupons to check for things I use - a whopping $4 is all I found. Anyhow as we were going through grocery store, it was as I had feared, she started putting all these expensive things in my basket with "try this and try that" and I kept putting them back saying they were too expensive. Finally she said she was going to be paying for all the groceries and wouldn't take No for an answer and for me to splurge on what I wanted. So the thing I really splurged on was chocolate covered marshmellow cookies which I haven't had since mom died as they cost $5 for 8 or 10 of them. I guess they remind me of s'mores from my childhood days. As the cart kept getting fuller and fuller (btw she thought my cat too skinny so she piled in all these expensive cat foods Sheba and that - which the cat licked at and walked away not eating it)) I finally had to ask her to wheel cart around. when we got to checkout I said OMG that's going to be at least $200 and was $225. At the last minute we talked about some crackers to help nausea and cashier went away and came back with two boxes of Ritz crackers to finish up the sale. Then out to car where BIL helped load it, then back home. By this time it was hot 80 degrees with 69 humidity, and she was insistent that I not carry anything upstairs. But she hadn't felt well either from cold or allergies being all stuffed up, and she was having a hard time hauling groceries up the stairs herself. Just at that time by next door neighbor came home and he carried the rest of the groceries up for us, and I introduced Sis to them. Then Sis left right away and I put frozen meals and cold stuff in refrig and sat down and rested. I called a little over an hour later being concerned for her and they had just gotten home. She said BIL had stopped for dietetic coke for her on way home and now being in air conditioning felt much better. She said she couldn't believe all the trouble I had to get groceries into the house - and I explained my process of taking up just what I coud handle that needed refrigeration and leaving canned and paper goods in trunk and just getting them over the next couple of days. She said I looked exhausted. She got to see me with about 85% of my hair gone (I did cut the ducktail of the remaining long hair just before she came) She was going to help me do laundrey but I told her over the last two days I was able to do 2 batches of laundrey which gave me clothes and nightgowns to wear. What a blessing I had today with them all helping me.
I had called and left message at parish rectory for the Annointing request - haven't heard back from them yet. Besides that, the only thing I have to do is drive car down to smog check so I can stop at Auto Club and pick up registration and tags for the car. I may have to do a mail drive this week for some other bills, as I will not mail bills from here cause of lost checks someone drefrauding my bank account with a check information. This chemo is different - I am just tired all the time. The very first chemo I took in 2007 perked me up for the first couple of days after chemo treatment, which gave me time to get things done, before I got tired.
August 5, 2009 - Well yesterday was the second day of chemo and it was a bad day. I managed to stay awake last night so I got to the lab at 830 am to give my blood and there was no order on the computer for blood tests! So I had to wait till lab got orders from oncology department, then gave blood and then walked the long walk up to oncology department and sat and waited. After 1 hr 15 minutes of waiting I asked receptionist and she checked and they said they were still waiting for my blood test results - which was a BIG lie since I checked my charts later and blood workup was done 1/2 hour after they took it. They kept letting in all these people who had come after me, and I started getting upset. Finally they called me and I got the LAST seat in the whole place, and it was a broken down chair that had all the stuffing missing in the seat, so sitting in it was like sitting as a big "C". My neck and lower back started hurting like heck because of the unnatural strain on it. They had so many patients there that they were not changing the bags of drips timely, so it took much longer to get the chemo done. What should have taken two hours took many more. The nurse complained that they had so many people in the morning and they never knew who needed short drips versus those that needed 5 hour drips - I remarked that she had booked me into a morning appointment when she knew I was a short drip and I would have loved to come in the afternoon (then I would not have stayed up all night to make sure I got up early for morning appointment!) I left the house at 8 am and didn't get home till 3:30 pm - and by the time I got home I hurt so bad in my neck and lower back that I couldn't go and do anything else. I popped some ibuphroferan and went to sleep, sleeping 4.5 hours. Then I got up and was up till 1 pm. I took a bad fall in kitchen that night. I went to stand up, pushing my rolling chair away from the table but instead of standing up I swung to the right and fell down between chair and cabinent, managing to catch myself against the cabinent and lower myself gently to the floor almost on my back. I had a heck of a time turning myself over and getting erect again, but I did it. I took an ativan and slept for 12 hours waking today with no more pain (yeah!) Spoke to sis tonight, she is feeling much better. We talked about her coming down this Sat and I said I wanted her help to go grocery shopping with me so she can carry up the groceries. She suggested she do the shopping and bring them to me but I said no - in that she spends lots of money on groceries with all fresh foods that I just can't afford. So we will see what transpires. I told her about uncle's call and she said she had talked to girl cousin who said uncle is out of it most of the time and that there was no way other cousin and uncle would be visiting her. Today, big clumps of hair are coming out - so that should all be gone soon.
I received the book from my uncle the priest and interestingly enough I opened it to a page about miraculous healings from the Lord and during the Eucharist. It's funny how sometimes God has put the right book in my hand at the time I needed it - and I need to make that appointment with parish priest for the Annointing of the Sick which also entails communion with the Eucharist.
August 3, 2009 - Well tomorrow I go for my next chemo treatment. Already the anxiety has started - the anxiety that I cannot go to sleep when I want and therefore cannot wake up when I need to after I do go to sleep - so I already know that I will be up all night tonight inorder to get to the hospital by 8:45 am to have blood drawn so it is processed in time for a 10 am appointment. I tried going to sleep at 2:30 am and only slept for about 1 1/2 hours and then back up again now. Probably will not be able to go to sleep till 10-11am. My body aches so much now, it's like if I had been lifting boxes in moving and the muscles ache and the joints. I have to be careful in taking Ibupfroferen because I am on blood thinners and that med can cause bleeding in the stomach. I've started getting gouty feelings in big toe and I don't know what is causing that because I take a pill every day to prevent gout attacks.
I had a few days of troubling thoughts caused by inadvertently watching several TV programs that dealt with euthenasia. I shocked myself quite severely when I had this surprise thought that I would not have to worry about being in such pain as I have plenty of sleeping pills in the bathroom. Get behind me Satan I said to myself, and started fervent prayers to put those thoughts out of my head. For some reason I am not so self assured as I was before, perhaps because I have led myself to think that perhaps I have already fulfilled my purpose in life that God wanted me to and that it may be that this time he has decided my time has come. Again I had to pray for myself that who was I to think that I knew the will of God that I could make that decision. So all I can do is do what I am doing, taking care of getting the medical help I need to combat this illness and pray for my preservation from this demon of cancer.
What a surprise to walk down to my mailbox and find some Get Well cards from fellow beadmakers on a chat board I visit. It was so nice of them, and when you think of them taking the time to buy a card, address it and mail it, makes them even more special. I got a lovely card from my friend in Minnesota who also enclosed a check who wanted me to do something nice for myself with it. Indirectly I will probably use it to buy groceries some time this month. Sis was going to come down on Sat to take me grocery shopping, but in talking to her I decided she should not come. She had flown to New York with niece in order to tape a Health show for her organization, and coming back they got left on runway for 3 hours then missed flight and had to spend night in somewhere in Arizona and then home and came back very sick. She had such trouble breathing on Wed that BIL had to take her to hospital ER. Then she and niece came down with horrible colds, fluey type thing - so I felt it more important that she take care of her own health over the weekend. My only sadness is by the time she does get here I will have lost my hair again. Usually it goes after the second chemo treatment. I got a surprising call from my 89 year old uncle - evidently my cousin made the call for him. He is living with cousin who is caretaking him as I did for mom. He has lost so much weight and he says all he wants to do is stay in bed and sleep. He says they have been trying to get him to eat but he just isn't interested in eating. He was forgetful during his talk and I had to remind him of things, nevertheless it was good talking to him. He'll probably forget I have cancer again, but that's OK too.
The heat has declined so I have been able to cut back on air conditioner use and get by with a fan. Boy that was really a hot and humid two weeks. I have to get some energy to go and get my car smog tested and down to Triple AAA to get my sticker for car registration renewal this month. My leg swelling has started back up again, so it's back to the elastic stockings again.
July 28, 2009 - A few more days have passed and I am feeling the effects of the chemo. I have been having nausea off and on so am popping some pills. I have a real deep bone aching and I had to go back and check 2007 entries to see I felt the same way then with this chemo. But I am eating even when I don't want to. According to my scale I have now lost 17 pounds so I hope I don't put that back on. I had emailed internist about continuing a pre-disabetic food plan and he says it's more important to keep my immune system up and to skip trying to diet. I went to store to pick up a few things and manged to come home exactly when neighbor got home so he brought up groceries for me. Isn't God so nice to have planned that for me? I have called and talked to everyone who should know about this, everybody is putting me on prayer chains again. I am having trouble sleeping again, I wasn't able to get to sleep till after 7 am this morning. My feelings right now are of numbness acceptance, just doing what has to be done. I have been watching a lot of TV on this computer thru a website called Hulu - lots of old discontinued and some new TV programs there. Actually shows I thought I would not like, like In Plain Sight, make so much more sense and seem so much better when you can watch the episodes right in a row with only 15-30 second commercials. It's been so hot here - in the 90s with humidity running 50-83% that I have had to run air conditioner for the last two weeks. My lymphedema has been so much better with the chemo that I don't even have to wear the rubberized elastic stokings anymore and the legs feeeeel like legs again. Well I am off to eat my broiled chicken and rice dinner.
July 25, 2009 - Well it has been a couple of days since my chemo. I left house at 9:30 am and did not return till 4:30 pm. I managed to find the second from the last parking space in adjacent parking building, so I had a long walk and was glad to have my wheelchair with me. There was a long line in the lab and not being able to stand long I was able to sit down in chair to wait in line. After blood drawn, another long walk to the oncology office where the wait begins. After an hour the blood results should be done and they are checked to see that I am in good health so I can take chemo. After awhile the doctor came out and had some words with the chemo nurses who did not want to take me today - she told them that I should have been taken before any other patient as I was authorized yesterday and the others were not authorized until that day. Evidently they wanted to send me away to come back a 3rd time. So they were disgruntled and said they would fit me in when a chair became vacant. So the girls were somewhat grumpy and curt to me that day, even when a patient called and cancelled an appointment for that afternoon relieving their schedule. The doc came to talk to me about meds, and I questioned her about Avastin which was the last two months chemo in 2007. She said , after all it's cancer cells in the lymph glands, so we are using the lighter stuff first and reserving the harsher treatment (my first 6 months) if the lymph glands do not go down when we do next cat scan in 2 months. Avastin costs $100 K a year which equates to $8K a month in treatment. After treatment was done I was walking down the hall to the elevator and while standing there felt some shaking and I asked others if we were having an earthquake - we were not, it was me shaking. Then in downstairs pharmacy waiting in line for meds I started shaking and shivering so hard my teetch actually chattered and I had to sit down. I had just gotten intensely cold feeling. So I got my meds and immediately walked out into the broiling sun and felt much better in the heat. I didn't seem to have as much energy as other times I have had chemo so I just went home. I was tired enough to take a 2 hour nap but still able to go to sleep later at night. I have had some episodes of feeling nauseaus, but have popped a couple of the pills. As I recall I had more problems with this avastin than the other chemo. One good thing about chemo - my leg and ankle swelling seems to go down during chemo treatment. When I came home I found my parking space has been taken over by the two large garbage bins since the apartment next to us was pavving their parking lot - so I had no where to park. Thankfully the guy next to me was just arriving home and he dcided to give me his space and he went to look for parking in the front street.
I had called everyone who should know, and been getting returning calls. MY uncle the priest call, and I finally found out what had happened to my other uncle who seems to be fading fast. I asked him about having the annointing for healing again and he said the old priests in his retirement home get this sacrament monthly just because they are old so it is perfectly OK for me to get it again. He is also sending me a copy of his third book and has just finished another book and looking for a publisher for it!
07/21/09 - I called my sleeping sister and woke her up last night and had a short talk with her, and that helped me. Then twin's husband was able to reach her and she called me and that helped some more. Then a friend in another state read my statement on a chat board and called me as well to comisserate. Despite that, I was still shaken as I really had not expected this kind of news from the Pet scan. I had been fighting a cold for over a month and I really thought my enlarged lymph glands in chest was due to infection. I called my local friend this morning and she wanted to take me to doctor's office but I said I could do it on my own. She has more trouble and pain in walking than I do and I just didn't want to put her thru that. I had a good visit with the doc today but did have to wait amost 2 1/2 hours. Basically this is considered secondary lung cancer in that she feels we didn't "get" all the cancer cells when chemo last ended in Nov. 2007. The Pet scan showed three lymph glands in neck and three in chest that are enlarged with cancer cells. Since I have a history of cancer and the Pet scan reconfirmed the chest lymph glands that showed up on Cat scan, she is not going to do biopsy of lymph glands. So tomorrow I am starting chemo again, using the same chemical cocktail as last time. After two months we will do cat scan to see if chest lymph glands have decreased in size. If not, then there are other chemos to try. There are no tumors and no cancer in bones, so she sounded optimistic without stating so directly (cause after all this has come back again). So that is where I am at, at present. I am feeling more calm about this today after seeing her.
Last night I did open the Bible randomly as I an wont to do and my eyes lighted upon this previously highlighted sentance Peter 1:5:7
"Cast all your cares on him because he cares for you"
07/20/09 - I am no longer in remission of Cancer. The oncology doctor called me tonight with the results of the PET scan I took last Friday. She says there is cancer in the neck and chest lymph glands. She wants to see me tomorrow instead of the appointment I have with her next week. I am shaken and feel like I have been punched in the gut. I am scared and trembling. And I am alone. I cannot even talk to my sisters, twin is at summer camp out of phone reach and sis is sleeping. Called uncle, the priest, and get no answer. Called friend, no answer. Just me and now my bible.
July 2,2009 -Hello Everyone - good news from the eye specialist. I do NOT have retinopathy! I have no hemorrages and no abnormal retinopathy arterial growths. In fact, she couldn't understand why I was even referred. Finally after checking back and forth with angiogram, she got real excited and called her director in to look at my eyes at something they have never seen before - teeny tiny arteries in my iris's - which are not supposed to have arteries. They don't know if I was born with them, or from vascular or cancer illnesses/treatments has caused this. Anyhow it has no impact on my eyesight and while they would like to do further tests (for their own curiosity) I will put them off for awhile till I see what else I shall have to deal with after the Pet scan. I was sooooo worried about losing my eyesight! WheW
Kaiser has a web page patients can go to and it shows visits to the doctors and what the diagnosis was at the time of visit. So the diagnosis she wrote was rubeosis iridis, and so when I googled that I was horrified because the progression seemed to end in blindness. But it took me a day to think about it and how they were both so excited at seeing it - because none of the illnesses associated with the condition have happened to my eyesight. I don't have retinopathy, I don't have glaucoma, I don't have cancer in the eyes and it's these types of illness that are experienced first before the eye tries to grow new arteries seen on my irises - which is why they were so enchanted with my eyes. Most people end up blind before this happens to their irises. Interesting enough though, one of the medications they are using counter to manufacturers recommendations is that Avastin, expensive cancer drug which they arre injecting into people's eyeballs.
So it's a mystery and a blessing for me that something bad did not happen to me which is how one usually gets this condition.
I swear to God that something special happended to me in January 2007 when I got my uncle's books on The Virgin Mary. I was reading some of the end pages and St.Anthony Marie Claret was being quoted and when I read that a real sudden chill went down my whole body - it was almost a convulsive chill. In later readings on miraculous healings most people reported a shuddering chill going through them. I went back to my uncle's books and I cold never find the spot again that I had read.
June 25,2009 - Well this week I made it to the internist and it seems as if I am pre-diabetic so I do have to start watching my food and drink. As I told him I do"eat" a lot of refined sugar in tea with sugar all day long. Today I saw oncology doctor - the CAT scan does not show any tumors but it does show enlargement of three lymph glands surrounding the trachea at the point leading down to the bronchial tubes. This can indicate cancer in the lymph glands. The erroneous MRI , I had done, does not show any change there and no cancer in the bone. So she has authorized a PET Scan for me to see if it can tell if there is cancer in those sites. If it is cancer then I will have to have radiation treamtnets. It's funny in that that is the area where BIL's cancer was, cept they didn't find out about it till almost too late. So all I can do is pray for the best. I checked the angiogram for the eyes - they inject dye in my arm, thankgoodness - I was thinking an injection in the eye! ewee) and then do series of photos for a half hour watching the dye circulate around in my eye. Seems to be a painless thing. One good thing about stopping the Seroquel, for some reason the swelling in my feet, ankles and leg has been greatly reduced and I don't have the ankle pain any more. Taking the one ativan pill each night has helped my sleeping. I got an email back finally from the shrink who said he doubted that the Seroquel caused my condition as the warnings are for those who take a much larger dosage than what I was taking. He wants me to set up visit with him. I got enough on my plate right now I think.
June 19, 2009 - I found out some bad news yesterday. When I went to visit my friend Susan and her two other friends, to show them how to use solder in some jewelry creations, I found I could not focus on work right in front of me, so I made an appointment to see about new glasses. It has been many years since I had gotten my last pair. Well the eye doctor says I have retinopathy of the eye, where blood vessels burst in the eye and new arteries are forming on the outside of the eye which are fragile. She is very concerned about this, she also says I have the start of two cataracts. She has me scheduled for an aginogram of my eyes. Coming home and researching this the only thing I could think or even heard about was diabetic retinoapathy, since my blood sugar blood test was elevated. An antidepressant I am (was) taking called Seroquel has known side effects of causing diabetes and cataracts and last year I begged the shrink to take me off this medication, and he refused. These side effects are right there on the official web site page of Seroquel. I shot off an email to the shrink last night, and today got an email from his nurse saying I could discontinue the drug. Great, now this damage has been done to my eyes, and it could eventually lead to blindness and is irreversible. Right now I still can see and am praying it does not get any worse than it is right now.
Sis and BIL took a week off of work for vacation and since they are broke from medical expenses, they decided to clean up their garage which is so filled with boxes of "stuff" that they moved to that house years ago, that they could not even move around in it. Have you ever watched George Carlin's skit on "Stuff"? Funniest skit and so true about how we keep, move and maintain our stuff. Anyhow, they discovered a nightmare. A couple of years ago their water tank leaked and they had to replace it. What they did not know was that water seeped out into the garage and ruined boxes AND created mold throughout their garage (can you tell they don't go into their garage much?) They managed to move out 4 truckloads of stuff and take it to the dump, and only got about half the garage cleared. Now they have to worry about getting their garage and walls bleached for the mold problem. And right after discovering that, They were washing some clothes and the washing machine stuck and the machine overflowed with water which flooded their laundrey room and went out one door into the garage and through garage and into driveway and down to the street, and went out the other door and managed to flood about 1/2 of their downstairs carpeting. Luckily they discovered two wet/dry vacumn cleaner when cleaning garage and spent two days vacumning up water from the carpet and trying desparately to dry it out. If it's not one bad thing it's another. So their vacation at home was completely exhausting and they did not begin to accomplish everything they had wanted to do.
I have three doctor appointments this coming week, one with the cancer doctor and will find out results of latest tests to see if I am still in remission.
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