Cancer Journal of Maureen Kennedy
Jan 2006 - April 2008
This will be a brief synopsis of what happened to me. This is how my life usually has gone, I did everything right (except stop smoking) and still things came out bad for me.
Basically in the last year and couple of months, four things have happened to me health wise. First during summer of 2005 I started having more general depression and gradually began to lose my desire to be artistic and make my beads. I thought perhaps this was an offshoot of my concern over my younger sister's health problems at the time. Then in Sept 2005 I twisted my ankle for the second time in 5 months and my left leg started swelling up to an alarming size - swelling started at ankle and traveled up to the thigh. In December it was finally diagnosed as Lymphedema from unknown cause. Also a test the results of which were not told to me, said that I had Deep Vein Thrombosis and sometime in the past had had a blood clot! Either you are genetically born with this disposition to lymphedema which displays itself before the age of 30, or it is a side effect of chemotherapy and cancer treatment. Only occasionally is it caused by repeated injury to lymph glands from accidents. There is no cure for this condition, all you can do is elevate the foot/leg and wear granny stockings to help compress the fluid rich swollen tissue. Then after Christmas 2005, I came down with pneumonia and for the first time started coughing up some blood in my sputum. I quickly saw a doctor and got some antibiotics and he was concerned at the one spot shown on my lung. He also was worried because I had weight loss of 20 pounds over a year's time, so he referred me to a Pulmonary doctor.
So I was referred to Pulmonary doctor and Xray still showed spot on lung. I requested a more heavy duty antibiotic (Having had pneumonia and bronchitis at least 18-20 time the amoxicillin just doesn't do it for me!) So he gave me prescription and when I came back both the CAT scan and Xray showed the spot had decreased in size by about 1/3rd! As he said then, cancer does not go down in size. So just to be sure we would have CAT scans done every three months. So ALL I KNEW for this entire time, was that I had ONE spot on my lung until Nov 2, 2006. Then I found out he had been "tracking" another spot on my lungs which had gotten bigger which is why he said we had to do bronchospy then. If someone had told me (pulmonary doctor or the emergency room doctor I saw in July when I had blood clots in my leg) that I had a SECOND spot on lungs, I would have done the bronchospy so much sooner. Seeing the Cancer doctor in December reveals I have TWO tumors, the first spot which has metastasized into the lymph glands in the chest (May be outside the lung, not sure about this) which developed into a second tumor. So we have lost 8 months in treating this, and perhaps 8 months earlier it would have been operational which it is not now, having the chest tumor between the heart and the spine. I vowed to myself then at the cancer doctor's office, that I would not let my fears run my life as I had in the 8 months - the bronchospy was a breeze compared to what I thought it would be in my fears. I will do everything they want me to do and do it as quick as possible. (Interestingly enough today (12/9) I was able to allay some fears of a friend who's doctor had suggested he do this procedure - by telling him of how easily it had gone and not to be afraid of it!)
But what is absolutely astounding is since the end of October, before I knew I had cancer, God has blessed me with feeling happy and such vitality that I am doing so many productive things and getting out and being with people. I have no fear anymore having turned it over to God, and yet I am happy most of the days now. Another amazing thing, the PET scan showed that at some time in the past I have had a stroke (Must have been when I was working and my blood pressure was uncontrollable and I remember having dimming vision then). So I am bless not to have had a bad stroke back then! I am also feeling the first stirrings of interest in starting to make stained glass jewelry boxes and kaleidoscopes again, as well as some beads.
CAT Scan done 10/27/06 - results known 11/02/06 - Pulmonary doctor felt highly suspicious of cancer now and wanted bronchospy done. PET scan done 11/10/06 with bronchospy on 11/14/06 reveals biopsy found lung cancer in cells.
November 15, 2006 --Hi folks - well I did the bronchospy yesterday and it was not nearly as bad as I thought it would be, although I started fighting them towards the end of it as I was choking on excessive liquid in my lungs. Dr. said PET scan shows "high activity" in the two areas he was concerned with but it also showed high activity in my neck lymph gland and my nasal passage. I asked if this mean metasised? and he said sometimes this test can mask other things. I told him those neck glands were swollen on Sat and I had sore throat and reminded him that I felt like I had been fighting pneumonia for the last couple of weeks and felt some heaviness in my lung for last couple of days. So at this point he is not sure if he "got anything" (meaning what he was aiming for) but he did take a snip of something for biopsy. I am so darn confused by this whole thing - things he suggested he could see with this procedure over the last 6 months discussion, he told me in fact he could NOT get with this procedure (like checking out scarred tissue to see if cancer was hiding there). Anyhow, I see him again in a week. Of course, I did not get any antibiotics. But with my asthma and allergies, when I normally wake up in the morning both sinuses are very congested and I usually sound like I have bronchitis until my asthma meds kick in. So if this bronchospy doesn't find anything, then I guess it's the "needle through the back" test next. I guess he won't say I do have cancer until some lab test biopsy says I have it.
November 21, 2006 -- Bad News today folks - it's lung cancer. He said we couldn't have discovered it any sooner than we did. I don't know anything more at this point, have to wait for oncology appointment where they will discuss options - but surgery is not one of them since it's in the lung's lymph glands. I don't want to talk about it anymore tonight, having just talked to my two sisters. So I will be back to the board tomorrow. Hugs to all!
November 22, 2006 --Hello Everyone - thanks for all your warm thoughts and prayers. One funny thing about this whole thing is that yesterday the doctor was so upset at telling me about the lung cancer, that I actually had to lean over and pat him on his knee and tell him that it is OK, that I did this to myself by smoking and that when I had started smoking neither my grandmother or father had died of lung cancer because of course I would never have started smoking if I had known that would happen. (my Grandmother never smoked, my Dad had stopped smoking 35 years earlier) Both my sisters are optimistic and upbeat (I think hoping since it was discovered so soon chances are better). So far, the PET scan shows it has not started anywhere else yet even though cancer cells are in the lymph glands in lung. So far the best way I seem to be able to handle this is not to be looking far into the future as to what may happen, but just take each day at a time right now.
For those religiously inclined, two amazing things have happened in "messages" from God. I read religious books (writings of the saints and others) as well as the Bible regularly. Well after the beginning of the month when doctor told me of CAT scan results, I just turned blindly to the bible and opened it as it willed to Peter 4:7 which basically says compose and calm yourself so you can pray, and then Monday night knowing already of the Pet Scan results and knowing Tuesday (yesterday) I would be learning of the bronchospy results, I again opened the Bible where it willed to Philippians 4:4 which basically says rejoice in the Lord and dismiss your anxiety and present your needs to God in every form of prayer. Now keep in mind I was not "trying" to do this, I just opened the Bible at random just to read some pages before going to sleep that night. The doctor really surprised me too in his concern, telling me to pray and ask others to pray for me - so again to console him I showed him my relic of St. Anthony Claret that I was wearing who had some miraculous cancer cures and is the order to which my uncle the priest belongs to. I guess he was surprised that I was taking it so calmly, perhaps thinking I was being fatalistic about it all, and he wanted me to "fight" for life. My twin wants me to "get angry" about having cancer (as a method of fighting it) - and yet who or what am I supposed to get angry with - certainly not God, certainly not my father who was smoking when I started smoking, perhaps I can get angry at the government in that the office I worked in for many years had asbestos in the insulation which we never knew about until HVAC system was replaced, but like Job getting angry to me it is just a waste of emotions and produces nothing except to make one feel worse. If I am fatalistic at all, it is in believing that everything is in God's hands and his will, will be done. Yesterday I visited that jukebox website of oldies but goodies songs of the late 50's 60's and played some of the songs, and listening to them made me happy - so I think I will start listening to music again. I called the Coumadin clinic and told them- because in my HMO experience they don't seem to tell other departments what they are doing. Chemo makes your blood thinner so they will have to adjust coumadin. Called Shrink's office today - they are getting me in today for appt rather than having to wait until the 12th. Oncology called today and appt with them is Dec 1. I emailed everybody I know to let them know (just didn't want to talk to everyone and have to repeat everything over and over (and didn't want to hear anyone say or imply that they "told me so") So I am taking care of business and rolling right along!
November 23, 2006 -- Hi Everyone - I had a wonderful time at my friends daughter's house (Thanksgiving Day). The food was wonderful and for the first time I ate a second helping of the Sweet potatoes as they were fixed in a way I have never had before (sort of made like pumpkin pie filling with raisins and walnuts in them with marshmallows on top). I was so relaxed and having such a good time I didn't even feel the need to smoke - and so often I get antsy being around people that I get nervous and feel I have to leave after an hour or hour and a half. I was there for 4 hours! I realized last night, after whining to myself for the last 6 years about not having a purpose to life, that now my purpose was to live life the best I could (last year I turned down this opportunity to eat with my friend and daughter' family and stayed home alone!) and that I now had a purpose to my life and that was to live the best and be the strongest I can for myself, when I have always been so strong for others in my life when they needed me. So on this thankful day, I am slapping a nicotine patch on myself tonight and will try very hard to stop smoking! (just don't ask me how it's going until I crow about how good I am doing!)
November 25, 2006 -- Religious thoughts if you want to skip it
Something really eerie happened last night and I don't know if I am being blessed, or cursed with over active imagination. I wrote a letter to my uncle the priest, who doesn't like to talk on the phone, telling him everything that has gone on. I told him of the two instances where I just happened to open the Bible to read and certain passages helped comfort me at the time I needed them. In the body of the letter, I was asking him if he would do the Catholic rite of Extreme Unction for me, which used to be only for when the person was almost to the point of death but has been changed in the last many years to a healing of the body, purification. I told him that I didn't know where the idea that I need some laying on of hands had come to me that day, it just popped into my head. Then I finished the letter, sealed it and took it downstairs to the mailboxes for the postman to pick up today. Three hours later, after watching TV and getting ready for bed, I pulled out the Bible again to read some pages and it opened to Acts 28:8 - and it told of the apostle St. Paul going into a man's room and he laid hands on the man and cured him. I was so astounded that my jaw literally dropped open. I don't know what to make of this - coincidence or a message from God. I will discuss it with my uncle when he gets back to me.
The four phone calls to friends that I had been dreading to make are done and they went much better than I could have hoped (for the most part). One friend in Minnesota in her late 70's is now caretaker to her husband who had some medical procedures which left him blind and being the very "helpless male" has left her practically his slave. I hated telling her adding to her burden of bad news but she took it very well and has strong faith too. She has had no break from 24/7 since the first of the year because he "won't hear of it" anyone else coming into the house. I told her to tell him tough, she needed time off for herself to just go shopping or out with the girls and just tell him she will be getting a babysitter for him!
My other friend in Florida who helped me caretake Mom at the end and who had a son die with multiple myoloma's two years ago and who has lost most of her sight to macular degeneration and who has amazingly found love and married at this time in her life (late 60's) - took the news better than I thought and had some encouraging words for me on how to get through treatments.
My other friend, the stained glass lady in her early 80's who has always nagged me about smoking and has a very critical nature (she finds flaws with whatever you do - like a mother! LOL) called me Thanksgiving night and so I told her and we had a very long and rewarding talk with no "I told you so's".
And I got to thinking last night, if you are so inclined, besides saying prayers for me, could you include my two sisters Eileen and Doreen because inspite of their up-beat front for me, I know they are devastated because they can't do anything to help me now.
It's still amazing to me how up I feel and am doing real well. I cooked a big turkey last night, and just hope I can find room in my freezer for some of the meat to use for other meals in addition to the turkey soup that I love to make.
Hope you all are having a good day and night.
November 27, 2006 -- Well I received some information today that may help others. Lynn was so nice that she found out the American Cancer Society local office in my city (which I could not find on their national website). Anyhow I called them today and found out that they have a transportation service called Road to Recovery that helps people get too and from their treatments. This has been my biggest concern in the last week since my sisters live so far away and my uncles are in the 80's and don't drive anymore. She also mentioned that they give people free wigs as well (and here I was trying to think of where I could get knitted snow caps to keep my head warm).You all have been such a blessing to me - you go through life and think you never made an impact on others and it is quite thrilling to know that others care about you after all! It is thrilling and humbling at the same time. God Bless you ALL! Hugs Maureen
Well I have already started to do things that I need to do. Went out today and bought new phone with 3 handsets so I can have one at all the critical areas where I spend my day. Started thinking of how to re-arrange my living room to give me more furniture to hold onto as I progress from bedroom to kitchen (thinking of weakness, etc). Started a list of foods I need to shop for before chemo starts (hints others have given me). One thing I have to do is stop researching on the net - scared myself today with things that MIGHT happen (that's looking a head again, and I said I wasn't going to do that). Took my weight so I can keep track of that. Need to start a notebook with all these medical test results so I can keep track of that too as well as appointments. I just feel like I have to get organized to help myself now while I can.
December 2, 2006 --Well the prognosis is not good and it is all in God's hands now. I am stage 3 with two tumors, one of which is between heart and spine so it is inoperable. (Actually this is area where chest lymph glands are located and cancer cells migrated there (metastasized) and developed a tumor involving all those lymph glands) We are starting on Monday with the most powerful combination of Chemo drugs and just hoping for the best. The tumors are small by cancer's definition about 17 mm each, and it is non small cell cancer which does not grow as fast but is more lethal. I could not get her to confirm when she thought I should have been seen by her having the pulmonary doctor making me do the bronchospy before he did (I think she was leery of me since I was tape recording the coversation since I was alone and was afraid I would not hear everything being stuck in my own mind on one thing she might say while continuing to talk about other things) - other than to say nothing could have been done in Jan 2006 because the tumors were not showing then - which means my April CAT scan should have been acted upon and I have lost 8 months with which this could have been addressed sooner (and perhaps before the second tumor of the lymph glands that is behind heart and in front of spine). Perhaps this is why my Pulmonary doctor was so upset for me, urging me to pray and have others pray for me? I am going to Parish priest on Tuesday (If I am up to it) for Anointing of the Sick. I had wanted my uncle the priest to do it, but he is 88 and in retirement home and says they do not do the sacraments there.
One brightest of all bright stars though is the absolutely wonderful Gift from Teresa Laliberte Lavender Creek Glass sent me from Germany. I had gotten my mail before I drove down to the cancer doctor's office for my appointment, and since I arrived early I opened the package while in my car. I was so stunned at the beautiful Dancing Queen she sent me that I started crying. That bead just EXUDES Joy of Life! Here's this woman proud of herself being a woman, just dancing and throwing her arms up in joy! What Teresa doesn't know is that I almost bid on that bead! I have always admired and liked her other tribal women beads, but this particular one just snuck into my heart. Common sense prevailed upon me not to buy it, since I haven't been selling beads for months and not had that income, I am somewhat broke at this time. So instead, Teresa through her generous heart sent me the bead I wanted the most - and I showed it to the cancer doctor and her bead will be my mascot and always with me through this ordeal.
BTW the pictures just do not do justice to the energy and vibrancy of this bead!
Another good thing, I gave my nieces 26 pounds of beads several months ago when one was down here visiting - they were all individuals or partial sets and I just felt like they were millstones around my neck. Well my two nieces started making jewelry with them, and at a "by invitation" show being held today, my sister says the people are just going wild about the beads and pandemonium is reigning with people buying the jewelry and just digging through the box of loose beads. So that lifted my spirits too, making me think perhaps I should clean the couple of dozens of beads I have made sporadically over the last few months and perhaps try selling them on the Bay again. Think I will just buy dollar stamps and over-postage boxes so I don't have to wait in line for them to be weighed.
So I am doing well, no point in crying over spilt milk is the way I was raised, I will just be doing what I need to be doing to get through this. Thanks again everyone.
December 3. 2006 --Well hello Everyone! I had a busy day yesterday doing things to get ready for tomorrow and afterwards. Went out for a lovely luncheon with stained glass ladies today- there were 11 of us and was fun seeing everyone again. Then I stopped at grocery store and stocked up on things I would need for the next 3-4 weeks (just in case I get too tired to go shopping). My hair turned out lousy (I chopped off 8 inches last night)- just doesn't want to curl right (course it may be the stylist! LOL and something I won't have to worry about for some time). Got off the phone with my sister, and she asked how I felt about tomorrow. I told her I have no feelings about it - just something I have to do. If I did have feelings, it would be gladness that we are starting to do something about this problem. The sweet girl in Germany that sent me the bead, said that when she read what I had posted on beadmaker's board, she just felt that I had to have just that bead - when she sent it to me. She was amazed how quickly it made itself here from Germany too. So I am doing good, am prepared and I think things will go well. Take care! Oh yes, in case you would like to see recent picture of me - here is link to one done just a couple of weeks ago for my 59th birthday - I am the one in black. (just so you have a pic for your prayers)My younger sister, her husband, niece and her boyfriend. So that is me at 59, and the one below is at age 58.
December 4, 2006 --Well things went pretty well today. But it was a long and tiring day, left the house at 8am and didn't get back till 5:30. There was some mixup, some blood tests didn't get ordered on Friday so I had to do that and wait for results before chemo could start. Then there was a mix up and I wouldn't let chemo start until I had talked to the doctor (she had told me Friday that all would be done in one sessions and the nurses told me it would be two sessions a week apart). Because I am on Coumadin, I cannot have a shunt for the chemo but must have intravenous injections (which actually I would prefer because I am such a klutz I would probably manage to tear out the shunt). There was no pain. Then after chemo I had to go to two different HMO pharmacies to get anti nausea pills since one pharmacy didn't have them all in stock. I clutched my dancing queen tightly to my hand during chemo- though I must admit that I was sorely tempted to pass it (the bead) on to a very tired and sad looking big black woman who could have posed for the bead! I resisted for this for now, knowing I will probably be seeing her again in the future (or maybe I will try making a duplicate for her or just a bead of my own since I doubt very much I could reproduce Teresa's bead!) So far I am feeling great, getting things done (spending lots of time on the phone with the sisters, nieces, etc).
Well it happened again last night, I said a rosary and after that I opened the bible to a page in Timothy - where Paul talks about laying hands on Timothy! I finally had to say - OK God, I got it, I am doing that Tuesday! LOL
I will say I am starting to get interested in getting back into making stained glass items again, some bevel hearts for sis's and nieces (something that doesn't cost me anything cause I have thousands of dollars in stained glass stuff already!). I gave up making stained glass items after Mom died, my doing so was just too intertwined with taking care of her that my grief at her passing passed into the stained glass as well. Tomorrow I am finally gonna clean some beads and see if I can take some decent pictures and hope to put up some auctions on the Bay and see what happens. Oh yes, the nieces made over $1,400 selling my beads and jewelry they made with it!
For those of you who are interested, I am starting a cancer BLOG with updates about myself so it is easier than emailing people I know and posting it on every chat board - so if you want to keep reading it you may do so at http://www173.pair.com/mirish2u/cancer.htm I never thought I would be blogging, primarily because my life had been so inactive and I felt I would have nothing to say. You also reveal a lot of personal life information on these blogs, but in my case of right now, I want to do so to reassure my friends and also reveal God working through me that I might help others with what I have to say.
Don't you all get too tired shopping! Hugs Maureen
December 6, 2006 --I went to the Anointing
for Healing yesterday and found myself uplifted and joyous with a wonderful
talk with the priest. I felt so very chipper and got a lot of things done
and I even got into a salon and got my hair cut so short (like a boy in the
back with a front flip in the front)- it feels weird as if I have my hair
up in a chignon but without any weight. Am going to try and see if someone
can take a pic of me, my sister's will be shocked.
Came home to find Hewlett Packard (Compaq computer) did not repair my laptop
and returned it to me unrepaired and after hours on the phone found that
they found "debris" inside the computer which allegedly cause the LCD screen
not to work right in displaying colors (or in other words, it would cost
more to fix than they want to do - sort of like totaling out your car). (I
uneasily wonder if cleaning my bead release from beads, even though in water,
may be the cause of this debris since I do it on the kitchen table where
the laptop sits even though it is always closed when I do so.) I also said
I had never completely opened the computer and the debris could only have
come when they repaired the "heat sink" in August! I asked if that
meant they would refund the extension of the insurance I paid them in July
for $120 since in essence they are saying they will never repair my laptop
anymore? No - they don't refund that! The packing box they sent it back in
had flimsy rubber cushioning so nothing worked on the computer - had to open
and reset memory and hard drive, and then it would boot up but they cleaned
the keyboard and nothing would key in any keystrokes so the keyboard didn't
work. I could live with the lousy colors (black being red, white being turquoise,
turquoise being pinkish - but I can't live without a keyboard not working.
So they are sending me another packing box and will re-look at it again and
get the keyboard working. When did computer repair insurance get like car
insurance? Nothing but a big ripoff!!!
Today had some problem with coughing up blood with my asthmatic sputum cough - called the coumadin clinic and cancer offices - no temperature so no infection. Coumadin clinic said stop pills for two days - for the first time in many a long time no sinus problems today which means that I must usually have a sinus infection because I normally have to take 3 or more sudafed type decongestants because of my asthma allergies every day. Chemo is supposed to cause dry mouth and that, and considering no dripping sinuses since I am on antibiotics for sinus infection, I guess I just dried out too much . We'll see how it goes. Today I went to gallery owner's house to fix her computer, and of course I forgot all my resolves to not hug and kiss people anymore because of lowered immunity - got to remember to stand away!
December 7, 2006 - - Well I decided my sister's needed pictures of me to help them get through this, so I went down to Sears today and got some pictures taken. They make it sound so cheap, only $15 for a sheet of pictures, etc. What they don't tell you is that if you want "enhancement" (which is where they blur the whole picture which is done with a click of a button - and you want this when you are old and have wrinkles! LOL) they charge you $7 plus tax for each sheet they do it to - which came out over $30 more! Anyhow, this is the first time in my life I got pictures taken - didn't even have any wedding photos since I eloped to Vegas those many years ago. My sister's will be so shocked to see how short my hair is, it has never been this short and just a week and a half ago it was half way down my back (cheaper not to cut it and just let it grow!) My face looks so bloated now from weight gain in the last couple of years from inactivity, and while I might have wanted to wait until I lost some weight (the only good thing about chemo besides it's killing effect on cancer) I wouldn't have any hair then for the picture. The blood in my cough is better, almost gone, woke up very dry again this morning so I think I will run small room humidifier for more moisture when I am sleeping. While I was at Sears I had to kill some time while waiting for the pictures and bought a new "bed in a bag" with comforter and that for my bed. My current one is 16 years old and probably so full of dust from the years as it is almost impossible to wash it. So tonight I managed to wrestle the top mattress off the bed, clean behind the bed, put the skirt on the box springs (which are just wooden slats) and remake the bed with comforter and shams. I am absolutely amazing myself at all the energy I have been having lately and how every day I am doing things that are so productive when for literally years I have been sitting here doing nothing! I also had to run down to gallery owner's house and fix one more thing on her computer. Computer is always working right when I leave, but somehow when she goes to use it, it doesn't work right again? Other wise, I am doing great!
Today is Pearl Harbor Day. My father enlisted in the Navy within the month (had to finish his semester at college) and was then in the service for over 5 years. Dad served in the South Pacific and until the day he died he would tear up when talking about what they found of American soldiers on the pacific islands after the Japanese had been through there - the mutilations of the bodies. War is war, people expect death, people did not expect wanton mutilation of the dead.And maybe it is not politically correct to still remember that the Japanese did these horrible things, because only we are expected to feel guilty because of the atomic bombs. Dad had a poignant story of watching the Japanese sink a ship and while he was watching he saw the pastors, priests, rabbi's give their life vests to soldiers without one, and then they died when the ship went down. So I am honoring my Dad in mentioning these things today.
December 9, 2006 -- Hello Everyone! I had a fabulous day today - and God's wonders never cease to amaze me! I got up later than I hoped, but I still managed to drive down to Gardena and join in on a bead maker's meeting at Pacific Art glass (a store). I was able to see people I haven't seen for years, and share with them my Tribal bead. I was able to comfort a man who's doctor has just told him he needs to have a bronchospy (because he's coughing up blood and the dye injected test caused him to go into shock for which he was hospitalized). I told him about my fears for 8 months that I didn't want to do it, and afterwards it was a breeze and he shouldn't be afraid. I splurged a bit and bought myself the same book that I had bought as a Christmas gift for my stained glass lady - and was told that they had run completely out of the books but had just found those three that morning! (was it meant for me? LOL). Then on driving part of the way home, I realized my St. Anthony Claret relic was missing off my chain and I made a beeline back there to the store. I had visions of people stepping on it and being broken and was heart sick. They were getting ready to close, when I walked in and said something terrible had happened holding up my empty chain around my neck - she knew exactly what I was going to say and said someone found it, didn't know what it was, but turned it in. I was ever so grateful and thankful that it had been found. Since that place is only a few miles from my uncle's retirement home (which I never knew is on the historical registry as it is San Pedro Adobe Home of the Dominguez famility of So. Calif) I stopped in to see him. Sometimes I ever wonder how he made it as a priest as he always seems nervous being around me - maybe it's me? (but my sister says the same thing about him) Anyway we had a lovely talk and he blessed me, and I managed to fill a small bottle of holy water from the St. Anthony Claret church there on the premises. So all in all, it was a wonderful day. I got to "counting" my blessing during the last 5 weeks I have had more social doings than I have in the last couple of years. I just seem to have this energy and I don't know where it comes from, except from God's grace. I am certainly sad to hear of other people having to go through the cancer scare themselves and will pray for them as well as all you others that have illnesses!
December 10, 2006 - Boy am I sick today with a raging cold. Now for most people this is not threatening, but they told me that if my temperature hit 100.5 degrees I have to go to the emergency room and perhaps be hospitalized. So I called Kaiser's 24 hour nurses line to ask them if I could take an aspirin (such a simple thing) which I am not supposed to take because of the Coumadin blood thinner I take. So of course they told me no. Well my temperature was 100 degrees and I said forget this, and took 1/2 an aspirin and will skip the coumadin pill tonight. Then will call Coumadin clinic tomorrow as well as call the Cancer doctor's office to see if I can take chemo which is scheduled for tomorrow. If I go to get the Chemo - believe me I shall wear a mask on my face to protect all those other people who will be taking chemo themselves and who's condition is weakened from lots of chemo treatments. I knew I should be more protective of myself wearing a mask when I got out - it's amazing how weak your defenses get from this chemo.
December 11, 2006 -- Hello Everyone! Well they canceled my chemo today because of the raging cold I have, and the fact I had temp of 100.2 last night (but I had to go down there anyway and have blood tests and wait and wait to be seen by doctor!) . Now catch this, incongruous, you have to be in good health to get chemo to kill cancer! I was disappointed, I wanted the chemo to be chasing those cancer cell parasites! I did wear a surgical mask thing today to protect others from getting my cold germs - I bet I looked funny! So instead I got a more powerful antibiotic and won't go back to chemo's second cycle on 12/26. I got another bead in the mail from a lovely lurker on the bead makers boards - she makes stylistic dragonfly (in other words, lines that look like dragonfly) beads and sent me a lovely writing about dragonflies. I tell you, people are just amazing to me.
December 12, 2006 --You know, I am constantly amazed at how people like Phyllis there are that think so well of me. I never thought there was anything special about me. My primary goal in life was to help other people if I could. I got to thinking that sometimes the only time we tell people nice things about them, is when we think they need to hear it. It's just something we don't do routinely. And with that thought in mind, I called my laptop computer case manager who reluctantly authorized the second return of my laptop to be fixed, when the first time HP returned it without repairing it saying indirectly that I caused the damage to it because they found "debris" in the interior. (Now I wonder if it was bead release they found - they couldn't identify it) and while I clean out my beads in water, there is always release hanging around my table from beads still on the mandrel, etc which can enter computer through the keyboard.) Anyhow, this lady suggested I have the geek squad or someone open my computer and spray canned air into it, so when the repair facility sees it again they don't see any release. The heck with paying Best Buy to do this, I took all the screws off the back and got the back up partially and sprayed the great majority of it with air - then shipped it back to them. So today I get the computer returned and I am dreading opening it up - thinking they have returned it unrepaired and I will have to buy a new laptop! Well, they did repair it, replaced the cables causing the color problems and replaced the keyboard so I am a very happy camper! So I called the case manager up but had to leave a message on her number and thanked her very much for her help and intercession on my laptop and told her how happy I was that everything got repaired. Sometimes people need to be thanked, even for doing their job, even when they are not expecting it (It's especially important for people who usually only hear complaints all day long as part of their job!)
And I am feeling very good today - just one day on the new antibiotics and I am 90% better than I was yesterday and earlier! So I emailed doctor telling her of this and asking couldn't we have the second dose of chemo sometime this week. (I also read on a website that it is NOT good to skip chemo doses as it takes your body out of it's cyle. So nurses called me back and we have reschuled chemo on Friday (Yeah! every minute those killer chemo meds are in me is another minute that cancer parasite is going to hit the dust.! I was just thinking about what I said on home page, that I never thought I would have enough to write a blog, and here I have been spouting off with all sorts of things. Ah, the creative freedom! LOL
December 13, 2006 --Well whoever I got the cold from, wasn't sick with the cold when our path's met or I would have stayed my distance. I have decided that I am wearing a mask whenever I go out, especially to the hospital to get Chemo. I am also going to buy those disinfective swipes and people can just start calling me Mrs. Monk! (I love that show, he's so cool) LOL After just two days on the new antibiotics, my cold is just about gone (so it couldn't have been a cold, right? I think I had been fighting bronchitis for almost two months but everyone ignored it because of the cancer. So I emailed doctor and asked couldn't I have chemo rescheduled this week (Imagine someone begging for chemo!) so I am now going to be slipped in on Friday. It's been 10 days now and no hair has fallen out - maybe after this next batch. My sister and niece sent me the cutest snow caps to wear. I was emptying my bathroom trashcan and found alot of the long strips of hair I cut off and put them together. I was thinking of running them through sewing machine sewing it to strip of fabric, and then using it to position a bang under my caps!
December 15, 2006 -- Well I have had another "God works in mysterious ways" again. I was supposed to get Chemo on Monday - but after waiting several hours doctor decided I was too sick to get it. So after start of new antibiotic I felt so much better I emailed Doc and said "can't we do it this week, after all?" (You don't hear too many people begging for chemo, I bet!) So today I got chemo again (another long day left at 8:30 and got home at 3p.m. ) When ever I get up early (like the first chemo time) I get so paranoid about being late that I just keep waking up every 20 minutes or so checking the clock to make sure I haven't overslept. So last night was no different, cept I slept 1 hour and then just plain got up. Anyhow, last night sis was telling me that my plan to go to other sister's house Christmas Day and then sleep over so I wouldn't have to drive home in holiday traffic (which would be about 3-4 hours for 65 miles) couldn't be done, because my next scheduled Chemo was 12/26 at 11 am! Oh My Gosh, that ruined all my plans - I just knew I would be too tired to fight that traffic to get home so I could get chemo - and I couldn't leave her house morning of 12/26 in rush hour traffic to get to chemo so I was practically in tears thinking I might have to skip Christmas at Sister's house. Well by begging for chemo for today, that ends up changing when I should return for next batch until Jan 5 - meaning I can now proceed with my plans at staying at my sister's overnight Christmas Day evening. Now if I had just left things the way the doctor wanted, I would have been screwed for Christmas!
The doctor was a little upset with me today - seems I have been taking anti-nauseau pills wrongly. The nurse told me to take them "for at least 3 days after chemo" making me think it was voluntary to take them or not after the 3rd day so I just kept taking them as if they were regularly daily pills - even though they said "if needed for nauseau. So I had brought my bottles in and asked if there were refills on the meds. She flipped because she said one bottle where only 9 pills were given cost $42 each pill, and Kaiser would blow a gasket if I refilled that too often. So I guess now I am to wait until I get sickish before I take them. (though I am eating yogurt for my tummy and sucking on salt in sunflower seeds always helps sick stomach - as well as flat coke or flat 7-up. The nurse was most surprised that my hair has not fallen out yet (day 12 from first chemo). I asked doctor if it was normal for cancer patients to have this "nesting syndrome" meaning I was so full of energy and wanting to clean house, re-arrange furniture, go through belongings and toss or set aside to give away (meaning clean up my act from a lazy 6 years). She didn't reply to that question, but instead said one of the anti-nauseau pills causes people to be antsy! LOL
Oh yes, my youngest sister thought my "joke" about sewing my hair to a piece of ribbon, so I would have a "bang" of my own hair under a knitted cap was gross! I said to her - what do yu think they do with Hair for Locks (?) they make it into human hair wigs! I told her that's as close as I possibly could ever get to "gallows" humor. hahaha
I am happy I finally listed some beads, all of today's sold and I sorely can use the money! So I am a happy camper
December 16, 2006 -- What a day I had, another amazing experience day! This morning I woke up with a feeling that I needed to go to the fabric store and buy some fabric. Now keep in mind that I had not made any clothing in 11 years and have given away 38 U-haul boxes of fabric after moving into my apartment, about 5 years ago. I used to sew all the time and still have several (make that many) U-Haul boxes filled with patterns, zippers, trims, etc as well as clothing fabric "in case" I ever wanted to sew again. So I debated what has caused this feeling (cause I didn't look at or do anything to create this feeling). I didn't have this feeling when I watched the Runway program of designers on Bravo. Now the last time I remember having a feeling like this was 12 years ago when some intuition made me buy fancy brocades, velvets and sequined materials when they were on sale - something said to me you might be needing these. And at that time it was a crazy thing for me to do, since I didn't go anywhere where I might need such fancy dresses. Then 3 months later I joined a social club (when this fabric including velvets were no longer on sale) and the club met every Friday night at a dance place and we all danced together and got to know each other. So every week I would make a fancy dress for me to wear to these parties - each week a stunning new look! (I was thinner then!)
Well maybe something unconsciously made me think of sewing, in that my ratty old bathrobe (don't we all have one?) is at least 20 years old and with my bad habit of putting my elbows on the table, has worn a BIG hole in the left elbow (by big - I mean 2" x 3") and I had been pondering on how I could put a patch on it so my elbow would not be so drafty anymore (it's turned very cold here lately). Yes, that's right, I love that bathrobe because it is the only one I have ever had that goes all the way down to my ankles and keeps them warm (fleece ). Now I have 2 perfectly new bathrobes given to me as gifts in the past, one I am saving for when I need something special (like being on holiday with my sisters so I have something nice to wear- gosh I sound like my grandmother now!- but I LIVE in my bathrobes.) And the other one isn't warm enough and both only come to mid way between knee and ankles requiring me to have to have a lap rob to keep my legs and ankles warm. Have you tried lately to stand up and walk while your ankles and feet are twirled inside a crocheted afghan? I also had cleaned out a closet a couple of weeks ago and was going to give away a lot of clothes that I can't fit into anymore (till I remembered that if chemo causes me to lose weight then perhaps I could fit into them again). So I have this pile of clothing in the other bedroom with all the fancy dresses on top of the heap (cause I was thinking - gee, even if I can't wear them perhaps I could cut them up to make Barbie doll clothes again (yeah, which I haven't done since 1965) since I was thinking perhaps I could join the senior citizen's doll maker's club.
So I take measurements on my ratty bathrobe and go on down to the fabric store. Lo and behold, they are having a fantastic sale! One I didn't even know about till a customer told me. Most of the fabric is on sale 50% off, and all the $14 patterns are on sale for $2 each! (My God, $14 for ONE dress pattern! No wonder women don't sew anymore). I found this most beautiful boucle flouncy fleece that doesn't look like any fleece I have ever seen, and the colors were my favorite pinkish purple and turquoise. I still have an Evan Picone jacket made with both these colors combined in a lined sweater type jacket. So of course I have to have both fabrics and decided I will make two bathrobes. As I was walking to the cutting tables, my eyes happened to spot this gorgeous chiffony material with iridescent butterflies and so I stopped to look at it as my sister loves butterflies. I held it up to the air and marveled at the sheerness of the fabric which just made the butterflies sparkle in their rainbow of colors which included - you got it- pinkish purple and turquoise! I stopped thinking of my sister, and immediately saw it draped on the fabric below and said my gosh, it matches both colors, and perhaps I should make some cloche type hats and could use some of this material for a scarf around the hat band.
With visions of the wonderful things I could make with this (it's so sheer I will have to do Hermes finishing on the edges - hand rolled seam), I put it in my cart cause it was on sale too from $10 a yard to $4.99 a yard. Because of these visions and knowing the pattern boxes at home probably did not have the right size I thought I would look at the pattern books. Once I opened them and started looking at the normal prices of $14 for one pattern, I gasped out loud and said "they are $14 each!" that the lady next to me told me of the $2 sale. So I got a bathrobe pattern, a cloche type hat pattern and of course, some Barbie doll patterns. For my senior project in high school I had to hand sew an entire Barbie doll trousseau (because my mother would not let me use the expensive sewing machine she had) so this was the compromise the teacher and I arrived at. My younger sister was still into Barbie dolls then and was thrilled at my largesse. I got an A on the project and to this day my sister still has all those Barbie doll clothes!
So unlike many years before, when my greed (and pocketbook)knew no bounds and I bought fabric on speculation (not financial speculation - just plain old speculation as to when I would use it all!) I took my treasures to the cutting table. And while we were measuring out 6.5 yards of fabrics for the robes, and when we got to the butterflies a real thrill went through my body when my mind decided that one yard was just not enough - and maybe I could cut out butterflies and applique them to the Baltimore Album quilt blocks that I started and will finish (one day). I was talking to the ladies there who were exclaiming how well the butterfly materials went with the other fabric and I told them my plan to make scarf for chemo caps with it (and maybe a real scarf too). So daringly I said I would take 3 yards of it (after all it was on sale!) So at Joanne's fabrics they give you this interim receipt of fabric and the total cost. As I started to walk towards the register, I saw that the butterfly fabric was totaling at $30. I went back to the aisle with the fabric and sure enough it said $4.99 on the sign. It mentioned several different makers of fabrics that the sale applied to, but I couldn't read what was on the cardboard bolt- so I grabbed the material and walked back to the cutting table.
Then I asked to talk to someone (not the lady that did the cutting for me) about what I thought was a mistake and was told that the sale only applied to certain silky fabrics and this wasn't one of them. I made the remark then, not bitingly just as an aside, that perhaps they should pull the ones that the sale did not apply to since it certainly was deceptive to have a sale price right over the top of the fabrics and I would not have bought 3 yards of it if I had known it was $9.99 a yard. They offered to take the material back, but I said No, I already had my heart set on it and I would keep it.
So I went to stand in line for the cash register, when a few minutes later someone comes up to me and says the lady I was talking about decided to give me the fabric for 50% off. So she marked over the price on the receipt that cashier looks at in totaling things. I asked why she was doing such a nice thing to me (as I certainly was not looking to take advantage of my chemo cap talk). So I went over to the lady and thanked her and gave her a hug.
Wonderful things like this keep happening to me lately, and I shake my head and give thanks. Sometimes I wonder if God is trying to show me all the things I have missed out on during the last 6 years, as a way to make me change my life. Then again, sometimes I think perhaps he is giving me a “good send off”.
Today I lost my first small clump of hair. The comb hit a snarl and in slight yank to pull the comb through, out comes this clump. But I will say this, I opened the Bible again last night to exact place where for the 4th time, “laying on of hands” was mentioned. I didn’t even know so many different places existed in the New Testament that talked about this.
At this time I don’t know what God has in store for me, but I find myself now more eagerly awaiting it.
December 17, 2006 -- Another amazing thing happened today. I have been at odds for 6 years with the lady who is considered the caretaker of this building. I've had run ins with her adult children who live elsewhere, with her being two faced about things with the owner, and my biggest grievance is how she is always trying to catch me feeding the ally cats and she throws rocks (even if they are laying underneath my car) and hurts them if she sees them (and I think she hurt my cat too). Well at the Anointing of the sick, you say your confession and I confessed harboring ill will towards this lady (and a couple of others in this building) that really isn't hate, but certainly not warm thoughts. Well the priest had me say a rosary for each one - and that was that I thought. I had told her about my cancer and chemo (after all I figured she would know when she saw me with no hair eventually) and was surprised when she and her daughter offered to do anything to help me - drive to doctor or store, etc. Well today she comes to my door and brings me a bowl of just made delicious Mexican Abigondas soup! You could have knocked me over with a feather. Now I have given her things in the past, A stained glass panel I didn't want anymore, liquor I was getting rid of for her son, clothes and appliances to her daughter, etc. This is the first time she has ever given me anything, and she was so nice in giving it to me. (I have to get that recipe it was that good!) This definitely has to be God's hand doing this because it certainly wasn't mine!
December 18, 2006 -- A year ago My Uncle's book was supposed to be published, the one about the Rosary and Mary. Anyhow they finally got it published by the Claritian press in the Phillipines, but it is so costly to send mail here that they batch up books for one shipment. So My uncle has been waiting for his copies for some time. I checked their web page and saw it listed for sale, so I emailed them about it. After a couple of weeks, they emailed me back asking how many copies I wanted so they coud figure out the cost and postage. So I emailed back to them and apologized for the delay because of tests and that for cancer. Today I received the 4 paperback books - found them at my door returning from hospital for more tests today. I ran the currency converter and it cost $33 to mail 4 paperback books airmail and took 12 days. No invoice or anything. So I called my uncle and told him I got them - and he's the author and he is still waiting to see his own book.! The last couple of days this chemo has finally started to affect me - been lacking that energy and vitality I was feeling, actually feeling poorly enough to lay down. Other side effects too. I see why they say don't eat spicy foods - I thought it was because it caused nausea, nope, it must be because of the way your tongue changes - because everything spicy tastes real hot. Sat I decided everytime I reached for a cigarette, I should put a small dot of cayenne pepper on my tongue - that's primarily how I found out about when that side effect started! Yeoooowwww!
December 19, 2006 -- Hi everyone - well the last two days has taken a toll on me - and getting tired quicker - even managing to fall asleep for 3 hour naps. My sister called and want me to go to Knotts Berry Farm with them tomorrow - and as much as I wanted to go last year and they didn't, I decided against going this year primarily because of the crowd and that I better conserve my energy for things I need to do around here. My lymphedema in my legs has been acting up badly since the chemo started - much more swelling and I decided too much walking would not be fun for me. Now if they had just wanted to go to lunch, I would have met them for that. The apartment owner was here yesterday so I told him, and he was so sorry he actually hugged me! That was a shock. Anyhow I gave him permission to come into my apartment if there was ever a buildup of papers in front of my door, to check on me but I told him I had phones all over the place in case of a fall. I shall be giving him and caretaker an up to date listing of relatives and phone numbers for emergency purposes. (I don't really believe anything will happen, but you never know - Just better to be prepared.) So I am doing things in little spurts and then resting, then some more, etc.
December 21, 2006 -- Well today starts the big day of hair loss - not that it's coming out in clumps. Run a comb through it and the comb is full of hairs - coming out sorta like when you pet your cat, running your hand the length of her back, and all those loose hairs are left on your hand. (and clothing, furniture, you name it! lol) I knew it was gonna happen, but nevertheless it is still a disappointment. Good thing my sister and niece sent me some caps last week, so I am ready. At least a little at a time is better than just waking up bald with all the hair on my pillow - gives you time to adjust to it. Still am tired, took another 2.5 hour nap today. I went to have blood drawn for coumidin clinic and pick up some meds at the pharmacy. My God, one prescription of 20 pills costs $751 !!!!! That's more expensive than GOLD! because those pills didn't even weigh an ounce. There is something inherently obscene with a drug company making that kind of money from pills. So they had R&D costs - I can't believe it cost that much for pills to run this expensive. No wonder people in poor countries cannot afford the AIDS medications -- and everyone else who has no health insurance. Belonging to an HMO I only had to pay $25 for them. Tonight was the big Ebay Book Board Christmas Party - a virtual party we have held almost 8 years now. We all get a buddy's name and buy them presents and send them across the country and then all meet online at a certain time and open our presents and just enjoy one another's company. I got some lovely things, a crocheted afghan which matches my living room colors, some CD's of 50's and 60's Doo Wop songs, candy and a leather journal, all from a lovely lady living in CT. Unfortunately my gift to my buddy in Maine was delayed - I couldn't mail it last week cause she was in the hospital, and I dare not go to PO on Monday, so I didn't get it mailed till Tuesday. So I emailed her and explained the delay and she was OK with that. Some people don't ever tell their buddy who they are, leaves them guessing and guessing, etc. hehehe
December 24, 2006 -- Hello Everyone! Well it looks like I will be getting my Christmas Wish after all - I will still have hair for Christmas! It started coming out earlier this week, and I kept worrying it would all be gone by Christmas. This is more a thinning type of hair loss - so I still have enough to look nice tomorrow but by next week it will be gone for sure. My sister mailed me two caps but they seem to be all the same size which is just not quite big enough - so I will have to knit some myself. I went to Christmas mass tonight with a pollen mask over my nose and mouth, and while I got some funny looks at least I was protecting myself from germs. Taking the host and being offered wine, I asked if I could just dip the host in wine and that was allowed. Ugh - the thought of drinking from wine glass even if wiped with napkin made me shudder. It's not worth being sick and maybe ending up hospitalized just for sociability. Tomorrow I drive up to my sister's house for dinner and being with family. I may not spend the night . Otherwise things have been going well here - sometimes I get a little tired but this is normal for this time frame after chemo. From here my energy should be going up (meaning my white blood cells). No more startling or amazing things happening to me, probably because I have kept pretty much to myself this last week conserving my energy. I have everything set for tomorrow and plan on having a great time! All of you have a wonderful and joyous day tomorrow with friends and family!
December 28, 2006 --Somehow in the last week my happy, happy feelings have disappeared. I have been getting more and more tired, and taking naps of 2-3 hours. Unfortunately my Christmas plans did not work out, I did not stay over night because my sister's MIL was also going to stay and she just drives me nuts. She ordered my sister around so much, in my sister's own house and kitchen(we just have to get these dishes all done before we sit down because it drives her nuts) , that my sister couldn't even get a chance to sit down and just talk with me. So we didn't have a nice talk after all by the time I had to leave to try and avoid most of the traffic going back to my place. Then I find out the MIL is taking her entire family (including my sister, niece and BIL) to New Orleans next June whereas my twin sister is canceling her June vacation in order to be on hand if I need help then. Today I am down emotionally. I started with a few tears last night as my hair is leaving my body by leaps and bounds and after a shower I looked like I have lost 2/3rds of it already. I really had like my long hair! Today I looked at myself in the mirror and said to myself "when did you get that drawn gray look to your face, like you saw on other chemo patients when you first started?". I looked just plain tired, sad, even after sleeping all night waking up to wisps of my hair in my face, mouth, whatever from it being on the pillow case. Yesterday I called and got the figures on what my life insurance amount is which will leave my sisters pretty well off. Had to give list of NOK to landlord and caretaker today in case I am found too sick in my apartment. (doing things which are not conducive to lifting one's spirits but necessary) I got a jury duty summons which I had to take to doctor's office yesterday, and then go back to doctor's office today to pick it up - diagnosis on it was lung cancer or death, prognosis - poor. I finally researched estrogen and lung cancer as doctor had first mentioned to me to try and not take it - and I see if has direct correlation to lung cancer, believed to help fuel lung tumors just like breast tumors. So I stopped taking it and perhaps this is causing emotional shifts - I know my body and my bones just ache when I forget to take it for several days - so how am I going to get along without it all together? Right now I am practically in tears, for the very first time since all this was known. Sure hope it is hormonal and that I will get over it! Going to the doctor's office has worn me out, 1.5 hour driving round trip and lots of walking - feel like I am ready to lay down again. And I am supposed to be on my upward swing of the cycle since I have chemo again in 7 days. Oh, I don't like feeling this way!!!!!!!!
December 29, 2006 --I am somewhat over it now. Last night I was thinking about my long hair, how I loved the feel of it while washing it and putting conditioner on it and having my hair fall straight and silky down my shoulders. Then I got thinking about St. Paul's admonition about women should cover their hair, which led into thinking about Nun's who in the old days had to have their head shaved when taking their vows - that hair was a woman's shining glory. So now my short hair is slicked back, like an Italian mafioso from the 20's! LOL I can say one thing definitely - I do not look good as a man (hair style wise). And yes, I did make some beads last night and they turned out lovely - will make some more tonight to finish the set. Felt good to make something I liked!
I just received the most gorgeous bouquet of flowers today from some good friends in Utah. The prettiest things I have ever seen with absolutely clear yellow and clear reds (no blue in them) - those primary colors with red carnations and purple zinnias and stock flowers are just so awesome together. Today I had to go to a different doctor's office for drawn blood for the coumidin clinic (blood clots). My ankles are so swollen I just can't get down to the post office and stand in line to mail some beads, will have to do it next Wednesday since the post office is closed Monday for the first and Tuesday for national mourning for President Ford.
January 2, 2007 -- Well for those of you old enough to remember, I became a "conehead" today - having the remaining 1/8th of my hair shaved off. It feels funny, like as if my scalp is sweating. (and I am not wearing a cap at home). I am not one of those lucky enough to look good bald. Now the dread is gone, maybe I will look into getting a wig and maybe not. The hair stylist was so nice, exclaiming how I can try all these new fancy hair colors in wigs now!
Don't know if I told you I got hit with summons for jury duty. Had to go to the doctor's office twice last week to have medical excuse part of the form completed. The diagnosis put down was - lung cancer and death. Prognosis - poor. That set me back a bit - thinking about it. Then my twin asks me "how do you feel about that." And it really bugs me that she asks me that same question on significant things that are happening - like I don't know what she is trying to get me to say or am I supposed to start weeping and wailing?? Anyhow, I responded to her - "at first it upset me making me sad, but then I realized that whatever the doctor says does not take into account what God wants for me." And I am operating on the belief that God wants me to survive this and that I will. It's just deep inside me that I feel God has decided this for me. Is it denial, I don't think so. But I am doing the things I need to do in case I don't make it - primarily for the comfort of my sisters.
Actually I am doing real well considering that the chemo being given me is supposed to the the strongest that they have, since it metasized. I haven't even had to use the nausea pills, and I am ravenous and eating alot (actually gained 4 pounds - when I am already 50 pounds overweight!). Only on the days I go to the doctor, since I have to do alot of walking, am I tired enough that I will lay down and take a nap. The blessing I have is that I am retired and do not have to look after a family, do not have to try and work having a pension coming in, and don't have to push myself to exertion. So these are blessing to me that are helping make things easier for me, and for which I am grateful.
January 3, 2007 - last night someone said of me on a chat board, that I was courageous. I really don't feel I am courageous or doing anything unusal. My reply was "I am not really courageous folks. I just don't have any fear and strong faith that I will get through this. When I think of courage, I think of Jesus who knew every minutest detail of what was going to happen to him, and still he went and did it and let it happen. Sorta like soldiers in war, they know exactly all the horrible things that can happen to them (having seen it happen to their fellow soldiers) and yet they do their duty - that is truly courageous behavior. So while I have the internet and have researched a few things (found out tonight my ravenous hunger is caused most likely by the restriction of the estrogen) and found out things like the tumor in the middle of the chest under the heart that if it grows will cut off blood supply to heart by pressing on the aorta - I just simply refuse to think about it, who knows if that will happen and then I will have wasted what time I have being so fearful of things that didn't happen. I already did that once in being afraid of the bronchospy and I refuse to be that way again. That's all there is to it, nothing really courageous!" And so last night, as I picked up the Bible - what should my eyes fall to but this exact text "I should like you to be free of all worries". At some time in the past I had yellow-lined those words, reading them in a different context then, so my eyes were naturally drawn to that sentance last night. The rest of the paragraph does not apply to me and now, but it is just eerie that these things keep happening to me.
The Priest at the anointing had said to me, "It sounds like you already have a special relationship with God", when I related to him several happenings in my life. I think I am now meant to be a witness to you all that read this blog of what I experienced over 10 years ago, of whom I have only told 3 priests and several friends and my sisters. I have only told people this when I thought they needed some special comfort (including my oncologist who herself has passed through some tough physical times and was still undergoing therapy for injuries). So check out my Scripture page in several days and I will tell you of the Blessed Consolation I received from the Lord. I will tell you of it, even though some of you might think I am a crackpot!
Tonight I had a delightful dinner with my friend Susan, whom I taught to be a bead maker. We always have good fellowship and enjoy each other's company. She is the lovely lady who invited me to Thanksgiving at her daughter's house. She is the first person I have shown my head to, having worn a cap my sister gave me to the restaurant. She thinks I have a nice looking bald head! LOL But I told her that having had my hair shaved off left a stubble of about 1/8th inch, and that it is painful to sleep on that stubble! Have you ever pressed velvet material, how you are supposed to have like a wide flat comb of many tiny needles to keep the material fluffed, well that's what it felt like sleeping on my "bald" head. Every time I moved last night, I was awakened by the "pain" (at least 50 times) and now I know why my cat almost bites me if I ruff her fur backwards - because it is painful! If I had known this I would not have had it done. Hopefully all that stubble will fall out too, but just think of what it means to have it grow back after chemo!
January 5, 2007 --I went for chemo today - good news is that what ever I have experienced so far is how well it will go through all the rest of the treatments. So you do not get worse with the continuing treatments. Bad news - Bone scan indicates possible spread of cancer to 5 vertabrae in spine and spot in sternum, which changes me to stage 4. Lung cancer just loves bone, I was told today. Good news is the chemo I am on now, is the same set they use for bone cancer. She kept asking me if I had any pain in back and I kept saying no. Good news is that the PET scan indicated possible cancer site in brain by sinuses, which has now been ruled out by this bone scan. Also said nothing wrong with adreneal glands and bladder. Next step is a MRI to see if it can rule out some of these suspicious spots on the vertabrae. I will admit to a few tears while doing chemo, till I remembered Pet scan and how that ended up being false positive. So I am still hanging in there hoping for the best. I remembered thinking to myself "Well God, it looks like you will have to work a little harder" and then I thought, dummy, God doesn't have to work hard at all with just a thought he could cure me of this if that is his will. So while this has not shaken my faith in God, it perhaps has shaken my faith in myself thinking that I know the outcome of this all. Looking for hope does funny things to one.
On another board someone posted about having to hear of other peoples illness and I replied: I can understand about not wanting to hear about other's illnesses - I am being bombarded on other boards through emails about other peoples experiences with C and I just really don't want to hear about it, neither the good nor the bad. I have these horse blinders on that look only straight ahead for just me. And maybe that is selfish, but I need to conserve all emotional and physical energy just for myself at this time. I spent 30 years in a job where every single day I heard about troubles and problems and illnesses of others (Social Security death claims, retirement claims when unwanted retirement, disability claims) and it finally burned me out - I couldn't take anymore hearing about things that I could not help anyone with. Now if I can help someone with a Social Security problem, I do so and have helped people regain alot of money because certain sections of the law were not applied correctly to their case. That friend I have in MN, I helped reduce her SSA over payment from $134,000 to $54,000 and still have it under appeal to reduce it even further to $24.000. This is not by pulling the wool over someone's eyes - it is in demanding and forcing the agency to apply the laws that were meant to help beneficiaries that the employees of SSA were too lazy to look up or apply rightly. (I was somewhat of a technician). Even now I am getting emails from complete strangers wanting to come out here and "take care of me" even when my blog shows that I don't need it now. It's disconcerting to me to even have to answer these emails of well meaning people - sometimes I just can't find the right words. I just try to be gracious and reply that I thank them but at present I am doing well. I just don't know what else to say. Actually sometimes I find the outpouring astonishing and bewildering as I am the one that usually helped others in their times of need (but that was when they asked me). I certainly don't intend to report icky things - other than perhaps remarking that I will be missing from the board several days so people don't start a flurry of emails to me.
January 10, 2007 -- Today I realized how callous my last remarks sounded, and that truly was not my intention. When I wrote that I was thinking of my building caretaker who was extolling the history of three of her brothers who had bowel cancer, when finally I had to say to her that I couldn't hear any more about it and I had to go. It's unique that in illness people seem to feel that they are comforting in telling you how bad someone else has had something! But also hearing of good stories of lung cancer survival makes me feel like I am teetering on a seesaw because I don't know if the same will apply to me. Thinking about it, I realized about Job, that God let him get just about to the point of death before saving his life. I also realized that I haven't written for a while.
I had Chemo again last Friday, and unlike what she said, I have been having some trouble with nausea. So I have been popping the nausea pills and still have that slight nausea that doesn't really go away. Having never been pregnant, I would assume it's like morning sickness that lasts all day? Today I had a violent episode of nausea but was able to control myself to where I could take those Big Buck pills which immediately helped.
Well in the last week I was scammed by a fraudulent Ebay seller. A perfectly legitimate Ebay seller some how compromised their Ebay identity and password and a thief got hold of it and started alot of auctions. Well people have been saying to me to do things that make me happy and uplifted and I decided to checkout prices of the TV series Farscape DVD's which I have wanted for a long time, but could not afford. The SCIFI channel had an 80 hour marathon of the shows a few years ago, and I taped them but they all have commercials and some "burps" in the digital recordings. So I did everything you are supposed to do, I checked out the auction, I checked out the feedback which was good. The auctions did not say where they were being shipped from. Upon hindsight, if I had checked the only two auctions of different items in the last 30 days, I would have seen that the original Ebay seller lived in NJ. Anyhow they had a Buy It Now price, so I clicked it and went to Paypal to pay for them. Now I had thought I had clicked use my credit card (I always do that in case I need to charge back) but evidently I did not and instead the money was debited from my checking account. The day afterwards Ebay sends me a notice that the account had been highjacked and they had canceled the auction (thereby deleting the auction page so you can't see it any more). So I immediately go to Paypal and initiate a dispute and escalate the dispute immediately into a "claim". The thief used Paypal's own internal system setup to send me a email telling me that the item had already been shipped giving me a phony Postal Service shipping number - which lulls the person into thinking everything is legitimate. (Even Paypal thought it was legitimate too!) I had been watching my credit card history online and still didn't see any charges, when I realized it was direct debit from my checking account. I called the bank, and yes, the money had been debited! What's particularly frustrating about this robbery, is that there is no name, no address, anything which you can use to make a complaint to the FBI or local police with this kind of robbery. Well the upshot of this all, is that I got my Money Back! Evidently I was quick enough in initiating a "claim" that the money could not be transferred out by the thief, and since they never responded to Paypal, Paypal reversed the money back to me! So I feel particularly blessed by getting my money back and decided perhaps I should just make do with the VHS tapes I made from the TV.
Well today is Wednesday and I still have not heard about the MRI, so I called that department. Evidently protocal is to have radiologist review a doctor's request for appropriateness (meaning have less expensive tests been done first with diagnosis confirmed) and I told the girl everything has already been confirmed with other tests (CT scan, Pet Scan, etc) so she will expedite MRI review for today. I just want to get the show on the road and do what needs to be done. If bone cancer is confirmed then a new medication needs to be started as soon as possible.
January 13, 2007 - Well the earliest my local Kaiser hospital could do the MRI test is not until 2/16/07!!!! She said other hospitals were not as congested, so I called around and found another one fairly close by and got a MRI scheduled for Jan 18. Then I see the doctor again on 1/25 so we find out for sure about the spinal cancer. It makes sense though, where the test says it's at, because the second tumor is between the heart and spine and I would guess that the tumor top and bottom are touching the spine. Below is a picture of all the sites mentioned to me so far. Because I had chemo again yesterday, they give you a IV drip of some anti-nausea medication which really made me feel chipper yesterday, but then the nausea is back today. While it is discomforting, it's not as bad as when I had acid reflux which involved alot of pain and almost instantaneous upchuck of acid if I moved the wrong way.
Yesterday while in waiting room for chemo, the social worker came in with someone else she had helped and on her way out I stopped her to ask her some questions. I had started noticing some real imbalance (stumbling) when I got up out of my bed and when I arose from lower couch, and ask about procedure to get a 4 prong cane. I've been looking all over for my Dad's old cane (solitary wooden cane) and can't find it anywhere. I then started to give her a suggestion, that Kaiser doctor should have explained more fully how insignificant the aspects of the bronchospy was, when I broke into tears and cried like I haven't done before this. She suggested I make appointment to see the doctor and tell him of my feelings and then just move on from it. Right, like I should wait a month and pay money just to tell him something he should already know ? It's just the thought that if we had those lost 8 months to work with now, I wouldn't have this cancer on my spine. I also did some research on spine cancer, which is generally from a progression of other tumors in other sites. The doctor had mentioned that besides taking another pill, that radiation treatments would probably be done on the bone sites as well. What really got me down was the figures 5-10% survive 12 months! I've started praying for God to let me know one way or the other which way it's gonna be for me. I mean I really hate the idea of saying and projecting that God is going to let me survive this, and then end up being dead after all and really crushing all of you hoping and praying for me. That's the problem with being so open about this - I don't want my demise to be a real negative effect on you all if that is God's will.
So while I was still feeling down today I posted on Wet Canvas my feelings. And then I got the sweetest post from a complete stranger saying the nicest things to me. "I have spent the past month going back and looking at postings from many years ago to learn more. I have been totally blown away by your posts over the years. You have been so helpful to so many people, so willing and ready to give tips when others would not. You, more than anyone else, jumped in to coach and encourage. In viewing all of the many entries, I have learned so very much. You have and continue to leave a huge positive mark on this community and especially on myself." It really helps having such positive feedback from people. The "support" I got from kaiser was just to tell me to call a support group at a more local hospital here! I thought the heck with that, I get more support from my cyber friends!
January 16, 2007 -- For the third time in a month I am having to turn down an outing with family or friends because I cannot walk far. In addition to the cancer, I have lymphedema of the ankles and legs which cause swelling, COPD with shortness of breath upon exertion and just fatigue (whether from the cancer drugs or from just plain inaction which causes you to be tired out because of no exercise.) When I had talked to the social worker about a cane, I have decided to ask the doctor next week for other items that will improve my quality of life - such as a wheelchair and a bathing seat (since I worry about falling over in the shower while trying to wash my feet). Now while I don't really need a wheelchair as far as a physical inability to walk, a wheelchair would allow me the opportunity to go out with people to places or events that require a lot of walking. I have never been ashamed to use some device that would make things easier for me. My mom who had Parkinson's disease made her life so restricted because she just would not go out in her wheelchair, because "people would look at her" (her shaking). There was so much I could have done for her as her caretaker to give her pleasure by getting out of the house that she absolutely refused because of this fear (or vanity?) Anyhow, even in just getting exercise it would help me, because I could walk behind it pushing it as I walked, and then have a place to sit down when I got tired. Already walking from the parking lot at the hospital to the doctor's office, I have to stop twice to rest before I go on, and there is no where to sit so resting is done standing up and catching my breath. People often stop to ask me if I am OK during this progression. There is nothing wrong with my arms and I can use them to propel me in the chair and if that became too tiring, then asking someone to push me. HMO rents these things and gives them to you as long as you need them. So I know my sisters will be shocked (I asked my sister that when the rest of the family went to Disneyland to see my niece at the restaurant where she works, whether Disneyland offered wheelchairs for people - I never got an answer). (Disney DOES have wheelchairs to rent!) So I would not need a wheelchair in my apartment, I think I will keep it stored in the trunk of my car for when I have to go out and walk some distance.
Some people would "fight" having to have a wheelchair as evidence of deterioration, where as I feel it would be a blessing both to strengthen me when I can walk, and help me when I am fatigued. Would you allow someone to help you when they offer you their arm to lean on? If so, why not use the devices that God has made available to us by the creation of inventions from someone's mind? I feel this same way about medical treatments, having just read that in the UK they have come up with a new drug that does actually eat cancers (especially lung cancer) because cancer cells give off a certain chemical that this drug is attracted to and it attacks those cancer cells. God's miracles are all around us, sometimes they might be able to help us and others may not reach us in time but be available for others down the line. Just like the cervical cancer shot, what a miracle that is!
a Sweet person on a chat board emailed me to tell me that the American Cancer Society often has these devices which they give you free! So I hope this information can help others.
January 19, 2007 -- Hello Everyone! Yesterday I went down for the MRI which actually turned out to be two MRI's, one with and one without dye. I don't hold any hope that it will discount all SIX spots as having no cancer, just seems to be too many of them for the bone scan to have mistaken that many. So I hope that in cutting a month off in having gotten the test done just means we can start the medication and the radiation that will be needed. Actually, the only "control" I have over this entire situation is in getting the medical treatment since my body is betraying me and running away with itself.
The nausea is pretty much gone, but I am left with some pain in my stomach as if my ulcer has come back. I take pills for excessive gastric acids and now am having to take prilosec as well. Will have to discuss this with doc next week. One thing I forgot to mention is that in stopping taking the estrogen and progesterone I have not had any hot flashes or bone aching. Since taking the chemo I have been feeling cold, much colder than usual because all my life I have been hot. For at least 20 years I have slept with an air conditioner on every night (but also because I liked bundling up with quilt even in the midst of the summer! LOL). So that's a positive, no air conditioner running means lower electric bills!
Today I went to the American Cancer Society and spoke to a lovely woman there. I got a free wig there today, much different from what I normally wear and a lighter brown color. My sister is visiting tomorrow so I am going to see if she can take pic of me wearing it. The lady also queried me if I would be interested in taking part of Trials on Chemo treatment and I said I would only do that if I was NOT a placebo person, otherwise no. Since those trials don't give you an option, I would only consider it if all options for treatment had been closed off and I was told to go home and die. It was somewhat depressing in that the literature she gave me shows only 2 percent of people live over 5 years. Sorry I read that stuff. I have been reading the bible but no new startling revelations - was reading Jesus parable about praying long and hard about the woman who kept on complaining to the judge for some justice on her case, who decided to rule in her favor just to get her off his back. Had to really laugh at that one but at the same time really wondered if he truly meant it that only those praying so fervently would be answered when I always thought that the Holy Spirit who knows all things in your heart would not need all the wailing and gnashing of teeth to know you really meant it!
January 21, 2007 - Well yesterday I just had a fabulous day! My sister and Brother in Law came down to visit me. When my sister saw my cone head she just about burst into tears. The bald head sort of gives it away that you are a cancer patient and on chemo - which to me is sort of a stigma as I have said before, there is more to me than being a cancer patient! Anyhow I then went and put on my new wig and she just loved it! We just had such a wonderful talk about lots of things, and then went to lunch at our favorite Red Lobster and met up with my niece. So much fun and such wonderful company, she can't have any idea how much I treasured yesterday! She said it's hard to realize that I am sick, because I don't look it. You can't really see my swollen ankles and leg. My color is good and I just look healthy (plump). I told her that is what was so surreal about all of this, I know I am terribly sick yet I really am not in any pain or really having terrible problems except for some nausea. People say I am handling this with "grace" but I say let's wait and see how much "Grace" I have if this gets really painful and worse. (Oh yes, we both just happened to wear purple yesterday!)
I told my sister about something that had happened this last week that I haven't written about, and some times my sister can be snooty and yet she wasn't and hit the nail on the head when she said I had received a Gift of Love! A lady who had read on a chat board about how tight money was for me, because I had not been selling beads for a long time, sent me a gift of cash "just Because". I was so stunned by this generosity from a complete unknown stranger. In December I had to spend over $300 on medicines and co-pays for doctor and test visits, so I did not even buy any Christmas presents for my family this year. After Christmas the downstair family of 2 adults and 6 children (in 1 bedroom apartment) sent their better english speaking daughter up to me and asked if they could borrow $100 from me, and I said No because I thought I didn't have that much on hand. Now a year ago when the sewer backed up in the building and sent sewage into their bathroom and hallway, the owner wouldn't really do anything about their plight and since it happened on a Sunday he would not pay triple time for plumber to come out. I gave money to the caretaker's daughter to take them all to a motel for the night to get out of that pest hole. Now I know these are proud people and would not have asked unless the need was great. So I figured out exactly how much money I had which was $140 so I went to the bank and drew out and gave them $120 which they intended to repay. Then the entire family went away for some time. When they came back they repaid me and I found out that their sister was dying in Mexico (she did) and they had to make an emergency trip down there. That's how low I was getting on cash at the end of the month, but figured I didn't need anything till the next pension check came. (which I didn't) So this amazing gift comes to me out of the blue from this totally unknown lovely lady who just wanted to help me! Such an angel, and so now I have it stashed away for emergencies. (my sister gets so mad a me when I do things like this because she thinks people are taking advantage of me - sometimes they pay me back and sometimes they don't - she thinks I need to build more reserves for myself rather than helping other people)
January 25, 2007 - Well some excellent good news for today! I had really been feeling pessamistic about the MRI results, thinking that there was no way so many suspicious spots could be discounted. Well the MRI has ruled out cancer on ALL the spots! (although it does warn that sometimes bone scans can show the earliest start of cancer). But the doctor felt confident of saying I had no cancer in the spine. What the MRI showed, especially in those areas the bone scan had mentioned) was that I have bulging discs and a lot of arthritis in my spine, with two discs fused together in lower lumbar area. Doctor was amazed that I do not have back pain from all that. During my life I have always been klutzy, I can remember at least 7 times I have fallen on my back from being bucked off a horse and landing in inverted vee on my spine, to slipping at top of basement stairs and sliding down stairway on my back (bumpty bump bump) to slipping on ice and falling on my back, then there was playing pogo stick as child and falling with my lower back ending up on top of the pogo stick foot area, or like when I was hanging upside down from the swingset and my sister tickled my feet to much I peed my pants and landed on my back, and so forth! LOL) So these results take me out of stage 4 back to stage 3a. The doctor wrote out the prescription for all the medical equipment I wanted, after questioning "who would be pushing me in a wheelchair?" (cause I guess she remembered from December when I said I had no one to help me through this.) So I told her first I would be pushing it and when I got too tired I would have a place to sit and that I had to turn down invitations because I could not walk that far. She also filled out a handicap sticker form which I imediately took down to Auto Club and got the placard today. I couldn't take chemo today as she said my platlets were too low, and I told her I just had chemo on 1/12 and she said no wonder, you are in middle of your cycle and rescheduled me to come ack 2/8.
Funniest thing on the way to doctor's appointment this morning. I have prayed off and on for a "sign" from God as to how this was going to go with me, especially since the cancer in my spine was indicated. I wasn't thinking actively about anything, just to get there in time with the traffic. A white SUV cut in front of me a few blocks from the hospital and their back window was black - and in the window was the words No Fear in white in lower right corner. Now googling those words I see it can be a clothing item manufacturer or a gaming thing - but why today and those words?
January 29, 2007 - Nothing much new happening here. I have been real lazy the last several days - I just don't seem to get much done even though I have all day to do things - which I don't do. I was thinking last night about "Signs" - why we wish for signs in our life as to the direction we are taking and whether wanting them is a sign of lack of faith. "Signs" seem an integral part of the Bible to me, in portending the future. While people are prohibited from using soothsayers and mediums in trying to portend the future, the Bible points out signs that people are to look for to know that a certain prophecy is to become true at that point. We have not had any prophets in the last 2,000 years. All the prophets are in the Old Testament and generally dealt with the Israeli people and nation. In the New Testament, we have John the Baptist, Jesus and John's revelations. And none since then. The letters of Paul talk about people having the gift of prophecy but none are recorded which leads me to believe what they had to say was not very significant! We have had a whole lot of saints though in the last 2,000 years, some of them relating what God has said to them. The big difference seems to be that in the saints, God did not tell them to take his message out to the people as an addendum to the Bible. What he told them was private, but made public only in the Church's order for the people to write about their experiences to use in validating them as a saint. So God has given signs and messages in private to select people. Even though Paul decries people "wanting signs" saying the only signs to watch for are those of the second coming, that cannot stop the human desire to know we are "on the right track" with how we are leading our life and the direction in which we are going. In my own journey I don't think it wrong in wanting a sign from God on how this is going to turn out. It's kind of hard to be uplifting to others at the miracles of God and how he is going to preserve my life, and yet turn around and try to temper that with if I should die it's God's will and plan for purposes that I know nothing about. The real problem in asking for signs, is that you don't know if what you get is really a sign or coincidence, yet how many coincidences does it take to make it a sign. In relying on "signs" can we take the wrong path? Perhaps this is what is wrong in asking for a sign, that we get bound up in potentially misleading things rather than praying and directing our mind onto God. So perhaps this is what Jesus meant when talking about the widow and the judge - that we should pray fervently and often keeping our mind on God.
Bad news on the beadmaking front today, another beadmaker has cancer (of tongue and mouth). So please keep in your prayers Rachel and Beth.
February 1, 2007 -- Well I got my wheelchair today, and I got it from the American Cancer Society. My HMO plan called for a monthly co-pay since they rent them from a company. So I called the ACS back and within two days I have a nice wheelchair that's not too heavy for me to lift. So keep this in mind if you have a relative who just plain gets tuckered out from fatigue (keep in mind that I had a personal interview with them for the wig, so perhaps that's why it went so fast for me).
For some time people have been saying that my attitude is marvelous, and I couldn't figure out why they said that. Then yesterday I read a blog of another person who has cancer and I can see how it is to be really depressed and really have a blackness of spirit. This woman had a tumor in her breast, did not have a masectomy but went with lumpectomy and is now undergoing chemo. She has been told that her DNA has mutation which means cancer will probably come back and doctors want to cut off both breasts and do hystorectomy. (They (the internet) says smoking changes the DNA in your lung cells so I have DNA mutations as well!) She is also having a bad time with the chemo treatments and considers it poison dripping into her body. It made me very depressed to read her blog, I did not like her descriptions of people in cancer support group nor descriptions of chemo patients. I would think this woman is younger than me, she has husband and family to help support her through this and yet she acts as if her world has ended. I had emailed her and told her to be happy that they could cut her cancer out and just throw it away! Even if I go into remission, my cancer will always be there waiting to come back again. Breast cancer is the most survivable of all cancers now, whereas my life expectancy is not so good. I don't find the people doing chemo with me are depressing, most of us are just bored waiting for the chemo drip to end. I don't consider chemo poison, I consider it like little crime fighters getting ready to round up and destroy those cancer cells. Without chemo, I wouldn't have any chance at all since my cancer in inoperable! (Besides, I already take poison since Coumidin is rat poison that I need for blood clots!) She found hearing stories of other cancer patients too much to bear - which is why I already knew that I would not want to join such a group and depress myself with other peoples experiences. I guess she hasn't come into reality where you know you are looking to the future and glad that these medications and surgeries can save your life - I guess I am experiencing gladness and hope while she is experiencing blackness and loss so I shall certainly pray for her mental health to come into balance. And I really don't want to make a statement about someone's ability to find comfort in the Bible as I have found, so I will just pray that she turns to it.
February 8, 2007 -- Well today was an unusal one, to say the least. I went in for my third round of chemo today and somehow I managed to get the doctor so upset that she actually shouted and screamed at me telling me I was "difficult". It started off fine, with her seeing my wheelchair which was a big help to me today. A fellow here at my apartment building carried it down the stairs for me and I stored it in my backseat as it wouldn't fit in the trunk. I got it out at parking ramp, and used it as a walker pushing it ahead of me, and then when I had to get in a line at blood desk and patient check in, I just opened it up and sat on it. Never realized how heavy my purse was till I didn't have to carry it but could wheel it around. So I told doctor about getting it free from the American Cancer Soceity, which she didn't know about and suggested she tell her patients who might not be able to afford a copay with Kaiser. Well it started off with me telling her of 2 weeks of nausea after start of last chemo round, and that it was mild and controlled by the most part by Prevacid. She found that strange and questioned whether I was using the anti-nausea pills she had given me and I said yes I had used some of those too but that I found if I eat something that helps the nausea (reminding her that I have excessive gasitritis) - and she said most patients just couldn't eat anything when they are nauseated. Oh well, I am different. Then I told her of a few times I have had trouble swallowing liquid, it feels like I have swallowed a large vitamin that is slowly going down my gullet giving me some pain. This is when things started going wrong. She looked at my records on the computer and said we should do CT scan and barium test and perhaps endoscopy to see if tumor is pushing on the esophogus, but that Kaiser did not like to do radiation treatment on tumors for people with cancer in the bones --- at this point I interrupted her and said I don't have cancer in the bones or so you told me last time I was here. So she had to look some more on the computer and saw she had not updated her notes to herself from the MRI results and started talking about endoscopy where they push a needle through my esophugus into the lymph gland and do radiation through that. I guess I interrupted her again, and said - but you said they couldn't do radiation on the lymph gland because it was between my heart and spine. At this point I am confused as to what she means and where she means - do I not have tumors but just two engulfed lymph glands? At this point she lost it. We are communicating on two different levels and my being difficult is that I ask questions and do not let her go through her little spiel. She just about had me in tears. In setting the next appointment, she asked if I would go through nurse and I said OK, but she said you are so difficult always wanting something that the nurses do not want to take responsibility for, like last time wanting the prescriptions for equipment and this time problems with swallowing. As she was inputting into the computer I said to her softly - since I have never been through something like this before I don't know what is normal or not and whether to brings things up or not. And I said that if I had seen nurse only I would not have brought it up. And she said yes to bring it up which is why a doctor is needed to manage care. So she ordered tests and I already found a message on my recorder when I got home to se up appointment for barium test. I am making allowances for her today - she was late in appointments by over an hour and could have come from a really bad patient and I noticed that she had one shoe untied (she had bad fall that shattered a leg and foot - so I think she was in pain herself). I think she felt badly about it later in that while I was having the chemo drip she brought by nurse and asked me if I had the chemo talk with the nurse yet - which I had in December. Anyhow the rest of the day went fine but it was another long one from 9:30 till 6 when I got home. I am glad we are going to do another CT scan now, as it will show if the tumor/lymph gland? has gotten larger or smaller as I asked if it was possible I was just gulping air as I drank which could cause that effect which she said it could.
Earlier this weeks I was full of energy on Monday and Tuesday and was able to get many loads of laundrey done (up and down those stairs) and clean my craft room and do other things that had been put off too long. I only seem to get 1-2 days a months when I have this energy and need to do as much as I can. Other days in the month, it's all I can do to make my own meal and stand doing dishes or talking my garbage downstairs. Good thing I live alone and can let things go when I want to.
February 16, 2007 - Well I passed my half way point yesterday - 6 of 12 chemo sessions done! I guess I was a "difficult" patient yesterday in that my blood counts were low ( for the first time), so the nurse had to go to the doctor for the OK to give me chemo. But I didn't have to see the doctor, who OK'd the session for me. Next week is the CT scan and Upper GI to see about size of tumor and whether it is pressing on esophagus - which I think it is because I am having symptoms when eating now. (But I have always been a "gulper" and now am more cautious about gulping food and liquid). I asked nurse yesterday whether there was anything I could do with diet to help increase the blood counts and she said no. All I know is the last few times I have had chemo I have been dramatically hungry especially craving to eat more meat.
Got some GREAT news - my twin who lives 14 hours away is coming down for the first week in June to visit me (I haven't seen her in 6 years) and to help me get done things around here. Knowing her, she will have me entirely organized! She and hubby are coming to help me get rid of things I want to, scrub walls and do whatever I need to have done around here as well as visit Disneyland with me in wheelchair and the rest of the family. I am so excited about this! I have finally gone through all my credit cards finding out which ones are still active, since I haven't used many of them for years. Did so in writing list of places for my sister to "notify in the event". It's amazing how many places have to be notified from public library card (to check if I have books outstanding) to union membership (retired active -union member since 1973) to car insurance to DMV, etc. My list is now 5 pages long (with all the numbers, addresses and info about each). Finally finished the last draft of my holographic will. Still working on the "bequest" pages - which will not be part of the will since I really don't have enough of anything to have to have an estate probated. Otherwise I am feeling pretty good - so far doing good on nausea this last week.
Funny thing - two days after encounter above -I got a questionnaire to fill out about my visit with same doctor on Jan 25. I was tempted to complete it based upon Feb 8 visit, but decided against it. If I have trouble like that again, I will be more confrontative with doctor and always have acess to more formal complaint process with Kaiser. Both my sisters wanted to go and "beat her up:! LOL
February 23, 2007 - Thing are remaining the same lately, cept I notice that my memory has been slipping a bit. This week was the week for tests for the esopahgus problem, and Tuesday I did the upper GI, and I thought Thursday was the day for the CT scan. I get down to the hospital a half an hour early and come to find out the appointment was for Friday. The guy was just going to turn me away when another girl popped up when I asked if there was a cancellation or something where they could slip me in. So she called and checked and I got slipped in being told it was a slow day. When I got home I see I had misread my calendar! So that was a blessing that I didn't have to go back again for that test. On the way home I realized I couldn't hear the tick, tick of my turn signal and checked it, and sure enough it wasn't working. So I stopped at my mechanic and not only the turn signals didn't work but the brake lights didn't work. (Thank God no one rear-ended me! So I had them keep the car to check it out and they drove me home. Turns out today that the turn signal switch in the driving column is broken and minimum cost to fix is $350. Add on top of that the $800 for a new crown that has to be paid for on Wednesday and all I can say is Thank God for credit cards! Thankfully I am not having nausea like I did the last cycle. I was reading something interesting in the magazine Cure that someone enrolled me in (about cancer) and it said Serontonin has been linked to people having a lot of problems with nausea. Serontonin is the chemical in your brain which effects emotions and a lack of it causes chemical depression (which I have). Anti-depressants depress your body's elimination of Serontonin so that your mood remain more stable. I take anti-depressant pills every day, but evidently there still is not enough serontonin in my brain to activate this terrible nausea so many people have with chemo. So that's another blessing (the other side of the coin of depression, I would say). My biggest problem right now is the terrible swelling I am getting in both ankles, which does get slightly painful. Even wearing the granny stockings does not suppress the swelling - and I guess fluid retention is a side effect of chemo but I also have lymphedema which also causes fluid retention. So I have a double whammy with both - but it's bearable - just limits alot of walking. So I am doing OK folks, getting by and getting everything I need to get done.
March 8, 2007 - God is Great! God is Merciful!
Today I received the results of the CT scan I had done on 2/23. The scan shows ALL tumors have disappeared! I am still so stunned about this, even hours later writing about it on this blog. I was to go in for chemo today (the start of my 4th cycle of 6 cycles) It was obvious to me that the doctor had not read the results that the nurse had printed out and attached to my folder, and only started to read the results when in the room with me. Her jaw fell open and her face had a stunned look on it and she read the results to me that both inoperable tumors were completely gone. She gave me the written report to keep. She said this was extraordinary and rarely happened. She then hastened to add that this did not mean I was "cured". I asked her and yes, we will continue with the 3 more months of chemo. I don't believe they consider a person cured, just in remission, when cancer abates.
I told her of all the praying I had done, and wearing the relic of St. Anthony Claret and how I prayed to God to kick this demon cancer right out of my body. I visualized little chemo fighters attacking the cancer and nibbling away on it like a pac-man. A friend on a chat board looked up St. Anthony Claret and found out that he was beatified as a Saint on February 25th, and my test was done on 2/23 (a Friday) and the 25th was a Sunday. Is this another coincidence? But from the doctor's reaction, I know this is only because of God that in his mercy he did kick the cancer out of my body. It was quite obvious to me that she had not expected that result at all, having only completed 1/2 of the chemo treatments. As it was, she was late in her appointments again this afternoon, so I have to return tomorrow for my chemo.
Of course when I got home, I called my two sisters right away when they were both at work. They are totally stunned and joyful. I have hardly cried since all this started with me and in talking with them an my other relatives today, I keep quietly crying with tears of joy and happiness. My uncle the priest, says he is so shocked and asked if they will be having to repeat the test again. I said I didn't think so, as this was the same test that said I had the cancer and that it had grown, last year. He said he could hardly believe it. I said yes, we just never expect miracles to happen to us just to other people you hear about, and I consider this a miracle happening to me. I called and left a message on the recorder of the parish priest who had given me the Annointing for Healing, to tell him of this glorious news.
I don't know what to say as to why this happened to me and not to others. I tried very hard NOT to bargain with God, saying if you will heal me, this is what I will do. I just asked that if I was healed that he lead me into some good works or efforts that will reflect his goodness upon me for others to know and see. Who knows, perhaps even this BLOG has been part of my doing "good works" and has been an inspiration for others or some hope held out for others in despair? As I said earlier, I thought I was meant to be a witness for God in telling you of my Blessed Consolation. All I am doing tonight is saying thank you God prayers, over and over.
In the last two weeks I have been reading bits of St. Francis de Sales from his book On The Love of God. Reading it brought to mind what St. Paul had to say about Love and how it should be patient, kind, etc. And I started thinking of the Consolation again and it came to my mind that as impossible we might think it to be as loving as St. Paul tells us we should, God loves us even MORE than what St. Paul says love should be. How St. Paul describes love is only an infinitesmal amount of the love God showered on me during that Consolation and I truly believes he feels that way about all of us, his children. Tell him of your worries and concerns and throw yourself upon his tender breast, and rejoice at his goodness and be thankful of his mercies, as I am this day and all the days of my continuing life!
March 9, 2007 - I just can't help it, I just keep walking around sort of shaking my head in the wonderment of my miracle. I did get a little paranoid last night wondering if perchance a mistake had been made and that the report was some one elses' results (once in my medical file a blood workup sheet showing glowing reports on blood levels was found to have someone else's name on it!) but in re-reading the report (thankfully the doctor had given it to me) I found other information on it about the inside of my body which agreed with earlier reports so I know it is truly my report! Of course I called everyone I knew who I had told of my cancer, wanting to reassure them about me and so many of them had been praying for me. Today at chemo I purloined the other report on the upper GI which said there was no obstruction or blockage of the esophagus. So I wonder why I was/am having problems swallowing - but if I hadn't had these problems then it is not usual to have done another CT scan until after the 6 months of chemo which would have meant 3 more months not knowing that the tumors have disappeared. I did leave a note for my pulmonary doctor who had done the bronchospy last November and who was so upset for me, telling him of this miracle with a mild suggestion that he tell new patients just how neglible the bronchospy actually is compared to their fears. Today I got an email from someone on a chat board "Maureen, Your news is literally stunning! Your faith and attitude is inspirational. For reasons I won't go into here, you have renewed my faith. " so I have been of some help to someone out there in the world!
March 12, 2007 - I find myself emotionally numb at this time - sort of having been on such a high the last few days which has left me emotionally drained. I have just checked out the cancer website the doctor recommended to me in the past -- to find out about remission - and yes, when the tumors disappear it is called remission. However for Lung cancer stage 3 it is stated "A complete remission is when the tumor disappears so that it cannot be seen on X-rays. However, unfortunately even if a lung cancer goes into a complete remission, it usually eventually starts to grow again." So how do I feel about this - well I feel grateful for every additional day God gives me to live. I am continuing chemotherapy against this possibility. And I would assume that there would be regular checkups to see if a tumor starts again. And if it does, there is no reason that God and chemotherapy cannot do again, what it has done now. So now I know why the doctor says I am not "cured" as doctor's experience in remission has shown it is not total. But in my mind if this was an extraordinary remission, who's to say I will not have an extraordinary experience of no reocurrance? I have been having trouble with nausea the last couple of days - having to pop those pills. I have also been having some pain underneath by right rib cage, which brought to mind a new diagnosis on the CT scan which at first I ignored which stated I have a "fatty liver". It sounds benign, doesn't it? But this is where non-alcholic cirrhosis of the liver can start. In researching where the liver is, it is where I am having pain. In reasearching what can cause this, some of the inherited diseases of my family and from which my younger sister suffers can cause this - such as diabetes, high cholesteral and tryglycerides, etc for which I have been tested for several times since my sister was diagnosed almost 2 years ago. I was trying to figure out if this could be a side effect from chemotherapy and have not found a definitive answer. Guess I am going to be a difficult patient again and start asking questions of the doctor regarding this and if she doesn't handle this kind of problem, make appointments with a doctor who does. So with all of the above, it doesn't look like I will close down my cancer blog just right now, but there may be long gaps between postings.
March 22, 2007 - Several have emailed me wanting (or missing) my updates so here it is.
My twin (fraternal) sister asked me one night "Do you find you have a new lease on life?". And as usual, I disappointed her by saying NO. And so I explained to her that basically nothing had changed in my life but that tumors I could not feel, that had not impacted upon my breathing or caused me any pain, had disappeared. (and what's really weird is that my asthma congestion in my lungs as gotten so much better!) I still have the same physical impairments that I had before, lack of oxygen in my blood which causes fatigue, swelling in feet, ankles and legs which can sometimes be painful, and side effects of chemo. What has changed is that I am no longer thinking about a more immediate death, and how to prepare for it. The will I wrote, papers I gathered, dispositions I thought of will not go to waste as all people should do this to help their loved ones when death comes unexpectedly.
This last cycle of chemo, which was March 8 and March 16 has impacted more on me than those of before. The March 8 chemo gave me some nausea, the March 16th has left me so very weak and dizzy. On March 17th (St. Patrick's Day) I still had enough energy to go down to the Beadmaker's meeting and spend some time with some lovely people, and then come home and cook myself a Corned Beef and Cabbage dinner! (Anyone who lives alone knows what that means - three days of eating the same thing! LOL). After that I went into a downward spiral of energy and for the first time experienced a lot of dizziness, even in just turning my head. For four and half days I could not do practically anything but just make myself a sandwich for dinner. Dishes are still in the sink and I hope to be able to do them tonight. Some beads of mine sold last Sat, and I have not been able to go down to the post office to mail them until today. Thank Goodness it was to one of my regular customers who I think will be forgivng of my delay. During this time I finally had to call upon one of my neighbors to help me, I had garbage trash sack sitting in my kitchen for two days waiting for me to get up strength to take it down to the dumpster, so I called them and asked them to do this for me which they did. Yesterday I girded myself and walked down stairs to get my mail (and to get some grocery bags of non-perishables from the trunk of my car having to rest on the steps before going upstairs again), which the post man just kept jamming in the box so it was difficult to remove them. My regular post man knows about my condition, and had said he would bring the mail up to me if he saw it piling up - so there must have been replacement people on duty this week. So today I was able to go to mail box again, and then drive down to post office to mail off the box of beads and two bills. Thankfully there was a open spot in front of the post office in which to park, and I put regular stamps on everything so I could just throw them into mailboxes without having to stand and wait. So I am on the upward swing of the bell curve of energy of this chemo cycle. The curve is down for 10-15 days and then up for the next 10-15 days then chemo starts again. I only have two more cycles to go through and thankfully when my sister comes in June I will be at the peak of strength with no chemo in June (at least I think none as 6 cycles will have finished in May). In the mean time I have started on my taxes and have all my papers gathered and sorted and so now I start the mathematics of totalling things and figuring out if I owe anything or not to the feds - I always owe the state because no withholding is done for them. So rest assured that I am getting stronger and I hope to be able to do some housework this weekend.
I have to tell you about this lady I chatted with during this last chemo. She was the lady who I first saw on December 4th chemo who I thought looked so much like the lady on my bead Teresa sent me. I came to find out that she has been undergoing chemo treatments off and on for almost 10 years. She first was diagnosed with breast cancer 10 years ago, a tumor she found herself despite yearly mamograms. She refused to let them take the breast and insisted on a lump removal with chemo. She has this fear that if she allows them to cut her open, that she will die from the surgery. So they remove the lump, give her chemo, she goes into remission and then it comes back again, and so she goes through that over and over during the last 10 years. That is one stubborn woman! As for me, I would have said take the breast and good riddance!
March 26, 2007 - Well today I got a really good look at myself in the bathroom mirror and what a fright I saw. I look like a zombie from the B movies! I rarely really look at myself, since I don't wear any makeup - just wash my face, comb my wig if I am wearing it, do my teeth and that is that. And my eyesight isn't what it used to be prior to age 50! Well today my eyes were gummy and so I really looked at them and saw that ALL my eyelashes and my brows are Gone! My eyelids without lashes look all puffy as if I had been crying (just not red). I thought I was gonna keep them since they didn't go in Jan with the rest of my hair. So today my face appears swollen and the eye lids swollen and I look like lumps of dough! (It ocurred to me later that I look like Hermann Munster of the Addams Family!) Oh well, just as well I don't go out much anymore - trying to be saving money because of the expenses of getting my car fixed and having that new crown on my tooth and state income taxes to pay in a few weeks. I did get out on Sat to the Friends of the Library bookstore where I found it difficult to stand for periods of time to look at the books for sale. I had to drag over a chair and sit down several times. I was able to pop into the library and get a few boks that I knew I wanted, and get out without getting too tired. So I find I am still weak and am wondering if I should push myself to get more excercise. I wonder if I looked as terrible as I do today without having noticed it. I have been reading about Mrs. Edwards and her cancer having returned. I noticed in today's AOL update, it was said that the bone scan showed cancer on her hip bone. And I wonder if she has had a MRI to confirm that, because remember with me, the bone scan said I had all these cancer spots on my spine that ended up not being cancer? I still think it weird that someone could hug you and break a rib bone in doing so - when she obviously did not have osteoporosis? Something is just strange about the information being give out about that woman.
I am still working on income taxes - almost got all the figures done and should be able to compute the tax returns in a day or so.
April 6, 2007 - Well I have been asked to Update again, so here it is. There hasn't been much to talk about because I having been doing almost NOTHING. I have been very ashamed of myself, feeling I am incredibly lazy. Seems I am able to get up, totter out to the kitchen table, have a couple of cups of hot tea and spend all day there reading a book or looking at chatboards on the computer. I am able to make something to eat, but leave the dishes in the sink. Standing to wash dishes is too fatiguing and bending over to pick up something causes me to be breathless. I have been laying down after being up for 5-7 hours, because of leg swelling and sometimes fall asleep. My excercise seems to be my 15 trips to the bathroom, being an older lady with that particular problem caused by lack of excercise and and many years of celibacy. Then back to the kitchen table and a book, and then later watch a couple of hours of TV. This last month has not been like the others - I didn't get my two days of energy to get things done around here. I have been so incredibly tired all the time and today we find out why. I did get a couple of spurts this week - was able to go to the post office on Monday , take down garbage and mail off my tax returns and some bills. On Wednesday I was able to go to the bank, fill up my car with gas at $3.29 a gal, and then grocery shopping (hadn't been to store in 3 weeks - but don't worry - I have enough food to last well over a month at a time!) Half my groceries are still in the trunk of my car - the non-perishables. Carrying groceries from the car and up one flight of stairs leaves me panting as if I had run a mile and takes me almost 15 minutes to "catch" my breath. Today I was feeling much better - breathing better (since I seem to be out of breath by doing the slightest thing) and was able to go to the doctor's office for chemo - and was told I have anemia and could not have chemo to