October 7 to November 6, 2003

 

 

10-7-03

That has to be one of the best visualizations that we all should do several times a day.  It would be a perfect guided meditation. It is one I can relate to. We just have to  picture a giant screen and the body is pushed thru it to screen out the cancer cells and when we come thru on the other side we’re cancer free. We went to an expert tonight to try to learn how to get in a relaxed state and she was very helpful.  She gave us a book and a tape and spent 2 hours guiding us thru   a relaxation technique [in preparation for my 10-15 scans]. 

 

The woman who does the reiki and relaxation techniques is a survivor of breast cancer; she is a nurse.  She said to tell my friends to think of me on 10-15 and envision me at 9:30 wrapped in a soft blue [ a favorite color of mine]. I will feel the good vibes.  Her name is Adria  and she has a beautiful voice that as you listen to it - you just relax.  The first time I spoke to her over the phone, it was calming.

 

We also got your surprise envelop today!  You have to be the best friend there is.  We have to lick this thing called cancer - our biggest battle yet.  Thank you so much for all the support

 

We just had no idea this would take off like wildfire.  Nothing like this has been done at the casinos before. It is gratifying to see how so many are willing to help.  Resorts is phenomenal.  Don't wait for your tickets.  We may be sold out before the end of the year. The announcement hit the fan club sites. People are coming from as far away as Canada [north] and Virginia [south].

 

10-8-03

Today we met a couple we know on the boardwalk for a fast stroll - some exercise.  It was the most beautiful fall day. Perfect weather.  There were bikers, joggers, skate boarders, surfers...and it was great to be part of it.  Our friends are leaving to go back to FL. next week and we won't see them till the spring.  Dolores and I taught together back in 1972; she was dating Arthur then.  They just got married last year!!!!!! A very long courtship.  Now Arthur is 65 and has Alzheimer's [way too young for that but that was his luck of the draw].  Everyone gets some curse.  It is pitiful to see him - it is a totally different person than the garrulous guy who talked a blue streak about his investments and businesses.  He gives one word answers now.

 

This morning the TGN was so bad at breakfast.  Every bite was a lightening bolt and it took so long to eat a little bit. After the cheek shock, the pain runs along my nerve to the side of the tongue and it feels like someone has it in a vise and is pressing on it.  It weighs down on the tongue and I can't move it.  I am running out of patience till it goes away this time.  I am up to 6 pills [1800mcg.].  Plus ibuprofen.  I resist taking the stronger stuff because it gives me terrible side affects ---who wants to trade one problem for another.

 

10-9-03

I agree with you about the voice being frustrating; I used to love to talk on the phone.  Now I can't even use up all my cell phone minutes.  My voice just gives out.  I sip hot water or honey but still, it has a certain amount of sentences in it and that is all I can do. You share the same problem I have - to say it once is difficult but to have to repeat it is painful.  We have one friend who after every sentence you say,  says, "What?"  It is a habit and I simply don't repeat anymore.

 

We were volunteering at the local food pantry and the pain was so bad I couldn't keep sorting the foods and we had to leave.   I sunk into a chair - that is not me. This just happens to be an exceptionally bad episode I am having this time.  If it doesn't ease up, after the scans next week, I will try to find someone  who is an expert in this.  No time [or will] to do it now.

 

Yesterday we were on the Manna schedule and I had to leave after a half hour.  The pain was so bad I couldn't keep preparing the foods so we had to leave.     Alan was elbow deep in spaghetti and had to take me home.

 

Then because we live in a resort, people think they are going to come down from Phila. [60 miles away] and stay overnight to visit.  I had to tell one and all that I am NOT UP TO any company let alone overnight company. They  cause me tremendous stress with their suggestive emails, that they wanted to come down for a few days.  Our oldest friends did come down for a weekend and we arranged for them to stay at a dear friend's condo.  The friends, the Moses, offered it so people would not stay with us and hinder my recuperation.  This way they could walk over, sit 10 minutes [my upper limit] and then go about their weekend.  There was no way I'd entertain, make food, and then have to clean up after people. For 2 weekends, I even rented my neighbors house so I wouldn't have to entertain guests that visited.

 

The city is 2 hours each way and I felt bad about people driving 3-4 hours total to  see me 10 minutes.  And  I got the sense that some people think they would be here to 'vacation' [you know, enjoy the beach and boardwalks] so we would have had our hands full at NOT seeing them. It would get me upset  over how to handle too much intrusion.  They say they understand and blah blah but want to be here to be a comfort to me.   3 days of them is not a comfort but much stress because I can't concentrate on what I need to - to be comfortable for my incision and the multitude of side affects.   They wanted to eat 3 meals a day out; I was not ready for restaurants .I couldn' t even sit up straight.   And it goes on.

 

On top of this couple, several other couples told us they were coming to stay in their condos one weekend and all had emailed they want to see me 'a minute.'  Or we should take short walks, etc. All these 'minutes'  added up to more than I could physically give  and I'd be stressed over the pressure.  It was so out of hand and if I needed to shut myself in and rest, I know I have to do it to get well. And I need the option of not seeing anyone, if I can't do it yet.

 

The biggest problem is the vocal cords.  I can't talk but people don't get it; they still ask questions and look to me to open my mouth.  It hurts and makes what little whisper I have, more raspy. 

 

There isn't a word in the dictionary for the type of tired it is. You don't have to apologize to them; THEY ARE THE ONES WHO OWE YOU THE APOLOGY because they are being insensitive and ignorant. How dare they not try to put themselves in your place. My friend Sandy with lymphoma [just had chemo and rad.] was invited to a wedding and she planned to wear dressy black slacks and a fancy top. Now instead of the bride's mother being thrilled Sandy is still alive and trying to make it to the wedding despite her side affects and feeling awful, said she had to wear a gown!  Sandy was so upset and for weeks didn't know what to do. I told Sandy not even to go since no one should dictate what she should wear and she finally realized I was right and didn't. These are truly PEOPLE WITH GALL.

 

10-11-03

I think we have to go visit that shrine.  My scans are Wednesday!   AND as this week wore on, the trigeminal neuralgia got worse. Which I thought could be impossible.

 

Buy [on the newsstand or in the supermarket or pharmacy]  ABC's Soaps In Depth [October 14th issue] and look in the back and see where they advertised the luncheon ---it is called "Starsearch."  We are thrilled at the publicity.  Fans of the celebrities coming, and will travel from as far away as Virginia or Canada!  We know the publisher of the magazine and she did not charge the Foundation for the ad.

 

The best meal I have is a dish [trough] of ice cream at night; it is numbing and the pain leaves awhile.  I have tried ice chips before each meal and it is a help somewhat. I have topical numbers [lidocaine patches & miracle mouthwashes and ambesol and even bitters].  I am up to 7 pills a day [just about the maximum].

 

Just one little, tiny, bitty, miniscule thing that you told the receivers of your newsletter. Itsy bitsy et al.  Actually it is Dr. Smith who told you that you are the record holder.  The male record holder.  I am not trying to down play your wonderful achievement of life, but I am a record holder, too. Nya nya nya nya nyaaaaa.  I was diagnosed in March, 2002. But who's quibbling here - we are the Olympic gold medal winners in this category. So your assignment is to tell Dr. Smith that there is east coast contender.

 

Actually with Wednesday's scans looming, the scorecard could change and all this banter is meaningless.  Right now I am not as nervous as I usually get. It is because of my mix of meds for my face.  I am quite mellow with them.  They kind of knock me out.   As the week wore on, my face got worse, which we never expected.  This is my worst episode.  So much so that yesterday I went with Alan for a 21 mile jaunt on the back of his motorcycle for a ride into another shore community north of here, Brigantine [first you fly by the new Bogotá casino].  I just was flying along enjoying it immensely for the FIRST time [of course I am pretty high on neurotin and didn't feel too much]...the winds were wicked so I pictured me going thru the wind as if it were a giant screen.  And as I emerged, it screened out the cancer cells and they got left behind in the dust.  Visualization. Guided imagery. Whatever. I told Alan I didn't want the ride to end, it was beautiful going over the bridges that connect the island.  We stopped for a box of fancy chocolates and then at an Italian bakery for bread for dinner. He handles the bike well with me on it.

 

10-12-03

 I can actually look forward to each day because people have been so wonderful and keep surprising us.   SO far, most of the casinos have taken out full page ads in our program book.

 

["I think your TGN is exacerbated by the stress you're experiencing."]       I don't know how since there is anatomically something wrong there; old Frenchie hit the nerve with her electrode and it is either scar tissue or some physiological problem she caused.

 

It was good seeing you Thursday again.  We always enjoy working there - it takes our mind off of other things.   I hated to leave early but I was having  a painful bout of trigeminal neuralgia in my right cheek.  The neurologist put me on some very strong meds to calm the nerve down but it has been a month and it hasn't kicked in yet. It doesn't have anything to do with the thymic problem, I hope,  since I've had this since 1996.

 

 Today, of all places we visited a catholic shrine about 1 hour from here, Padre Pia. For a while people have been telling me how wonderful it is since people that get blessed there get the miracle of a cure.  It started out as one lady getting cured by that priest, I think.  The story was in the newspaper a while ago but of course I didn't pay any attention to it.

 

The shrine is build on the main highway, and has benches and an alter. A lady comes along and places your hand on a piece of Lucite that has a piece of the priest's robe [I think] in it. Then she says a prayer. At this point, with the scans looming Wednesday, we are willing to try anything.

 

10-13-03

There is just too much self-centeredness and egocentrical nimrods out there. Are we just expecting too much out of people. No - I was brought up so different that those types.  I know if I had a sick friend, and she couldn't talk but could only do email, it would be my goal to constantly support her on the computer if that is what she wanted.  But get a load of this - some people told me they couldn't email me BECAUSE they couldn't get on the computer since their kids monopolized it.   I can hear my parents' voices in my head now - way back from the 50's.  They’d pull rank and say what they had to do is a  priority over me sitting there playing around.  Don't people have backbones anymore.  Those excuses made me livid.

 

But those that disappoint me, I really don't want in my life.  Especially since some wonderful people have totally spoiled me.  And thank God for Alan, my rock and Prince Charming.

 

As this week wore on though, the trigeminal neuralgia got worse. Which I thought could be impossible. This is the worst episode I have had. I feel so drugged up but am not getting anywhere.

 

Today I visited the cardiologist just for my check up so they did the regular EKG.  I said [as I have said for 30 some years], "Is it normal?"  And the dr. said NO!  What a surprise.  He said I have a right axial branched bundle blockage and that he will watch me carefully.  He said if it gets worse, I'd need a pacemaker.  Since it put me on overload, we did not really pay any attention.  At least he did not harangue me about my 452 cholesterol - I just kept moaning about my face pain for a diversion.  Aren't I a fun patient. 

 

In answer to your question, the scans Wednesday are part of my follow-up which they do every 3 months now.  Someday it would be nice to graduate to every 6 months.  I will go to AMI in Somers Point - their new PET scan instrument does a CT scan AT THE SAME time. And it is only a half hour compared to the old one at one hour.  First you are injected and must lay still for an hour.  I am being a masochist and having my mammography done the same day. Usually I go to Jefferson - hope this is not a mistake. Jefferson reads them while you wait. I will try to get AMI to do the same.  I don't like having to go back for re-takes.  And  I hate having my breasts smashed between 2 pieces of glass!

 

10-14-03

---we will be rocking and rolling.  We have received unbelievable items so far [if you get a chance look at the Foundation website and see the sneak preview that Alan put up].  We are just so touched at the outpouring of support we are getting for this event. Most of the time we haven't even had to ask  but people just volunteer items.  One of my doctors at Hahnemann is giving a Sam Maitin piece which he said should be worth $5000.00 [I know little about the art world].

 

10-15-03

It is a difficult time.  Today were my follow-up scans at A.M.I. [the dreaded PET and Ct then they did the CT again with contrast so the I.V. was in 3 hours.  Ouch.  And add a mammy-o-gram on top of that. [this they told me right away that it was okay - I insisted on the results as I was running out of patience].  I went to a special session with a woman who is a reiki master last week and she teaches people how to relax before surgery so it is to the advantage of their immune system.  She told me the technique would work for before a major test too.  It was amazing.  She gave me a tape to play each day and it really did help [I even had the techs play it while I was in the scanner!]. 

 

 Nothing like getting your breasts smashed between two pieces of glass, right?

 

  Now the wait begins and I am climbing the walls with worry.  The radiologist at the center called because we know him from our friend's parties and he sees a new spot in my clavicle that lit up and the lymph node in my chest was brighter he said.  Tomorrow we go up to PENN to see the oncologist and let them interpret this. ON the way home we see Dr. Check.  And then a round of drs. to see what I should do.

 

I am trying not to get upset...YET! We need this interpreted by our experts that know my anatomy after the surgeries and radiation.

 

10-16-03

Thank you for your prayers and visualization.  I guess in a way, it all has worked.  Things could be worse, I keep telling myself.  At least for the moment I can get another 3 months to fool around with life.

 

Today we saw 2 drs. -  first, my Penn oncologist who interpreted the scans as "you will never be cancer free; we will watch the spots and not start chemo since you feel good and chemo would reduce the quality of your life. My blood pressure was up today to 160 over 110 in her office.  She said she is hoping the clavicle marks are related to the recent lung surgery [to make me feel good or hopeful].  We are putting in a call to the surgeon who did it to see if that is accurate.

 

 And there is no guarantee the chemo would do anything because we have no experience with this type of cancer.  If the lymph gland that lit up gets bigger maybe it can be radiated.  There is the option to go to the big guy in Indiana if the scans change next time and get in on his trial.  We can hope that the spots stay small and not grow and interfere with any body processes.  Some spots only show on the PET and not the CT so they many not even be there next time.  We can always start traditional chemo if they grow but it is toxic and you lose your hair."   She thinks if I can keep the tumors suppressed to the size they are that would be good.  How I wish I knew the secret to doing that.  Hell of a speech. She told us as nicely as she could.

 

We had hoped I'd have pristine scans. She was pleased that the scans were what they are.  It is not excellent but satisfactory.  Dr. Check [endocrinologist - gynecologist] said about the same but if the spots grew he'd like to try a few other experimental drugs.  He has been working on cancer research [I don't know how he has the time-the man is tremendously busy] and he gave us last time pages and pages to read and the theory sounds good.  Jerry went to Olney High.  I didn't know Mike went there too. The school produced mensa timber back then...but not now, unfortunately.  Jerry has people that fly in from all over for his I.V.F. procedures [he has a higher percentage rate of success than other institutions].  One of my students from 1976 worked for him for some time so that is how I came to go to him for care. He is an unbelievably superb dr. No words to describe his level of care.

 

 As long as there are options, I can live with this. But I am not totally thinking in the best mode since I am on so much neurotin that it dulls my brain as it dulls the shocking nerve.

 

Normally I'd be going crazy from the news but the pain of the trigeminal neuralgia diverts my mind from the above so it is odd how this all works.   Also the heavy doses of meds I am on keep me in a bit of a fog. Funny you should mention it.  I was on valium before the scans and it actually helped the pain more that anything else I was taking.

 

 

10-18-03

 It has been a rough few days. This morning the TGN was at its very worst. The pain was unbearable and I don't think I could ever explain how bad it was [it was at the point where I broke down and took Tylenol with codeine].  I didn't need that for the neck dissection or lung surgery.  Isn't that amazing.  If it is this bad tomorrow, then I will take percocet.  I was wishing someone would shoot me like they do a horse.  Breakfast was almost impossible - the more I tried to put food into my mouth, the more searing shocks I got. Now it is a bit better since I had 3 dips of ice cream.

 

Now we have 3 more months to keep planning our very unique luncheon.  Today I dropped a letter off at Caesar's Casino because Elton John will be in town to perform and I figured I may as well ask him if he'll come to our event.  The Public Relations office said they'd pass the letter to him. We'll see. 

 

10-19-03

You asked if I ever asked "Why me?"  And I have never gone thru that stage.   I don't know why - I hear it is normal.  Even in the worst of it ---I know there is some unique pattern in the universe that is like a puzzle and all pieces eventually fit.  You and I meeting are part of it.  So many coincidences we have had the last months are part of it.   I just feel like there is some reason God chose me to have this - maybe it was to start the Foundation and bring attention to a long-neglected terrible disease.  A mouth piece was needed, maybe.  Throughout my entire life I have always done the different path so it never shocked anyone that has known me for a long time, that I got the rarity.   It is just that I want to do right by it and figure out what God wants me to do.  I always tell Alan that we have to do something or else there is no reason why God would keep me here. But at this point, I have gotten his /her message and would like a little medical relief for a while.

 

It is odd...I don't even cry. Never did when we have gotten the news [over and over].  Only twice - once during a healing service we went to [I really do not know even why I started to cry].  And the other time was when we met with a nurse at Gilda's house and she took us thru a guided meditation.  Afterwards she asked how I felt and I couldn't talk, just cried. 

 

We never tire of looking at the ocean or walking on the boardwalk.  We both appreciate you taking time to meet us over there; it helped take our minds off the news for a while.  Being with people we enjoy for a while is very therapeutic and we  especially find that activities not associated with eating are best. Except for soothing frozen custard, that is.  That damn trigeminal nerve!  So you were a good friend to  us yesterday.

 

We calculated that this is the 7th time in a year and 10 months, that we have gotten news we didn't want. Eventually we find a way to go on but we just need time to adjust...again... after having our hopes dashed. Though it is difficult to see myself as all those positive adjectives you bestowed on me.  Your wishes for us to enjoy the sunny day came true. Luckily we live here and have met a lot of people that are determined to help in ways I enjoy.

 

They had suggested keeping it at every 3 months which would have been January and April.  I really don't want to deal with any of this in April so I suggested going to 4 months and having it in February and May.  The dr. agreed.

 

We used to go to the movies every week when we dated in the '60's but now we rent them.  I am terrified to catch anything since I am immunosuppressed so I won't go where there are crowds or recycled air [like planes].  If I catch a cold, it could kill me, at this stage. Another long story of me and germs.

 

We are doing the best we can, given the situation. Besides the prayers and good thoughts from so many people,  luckily there is Alan.  He is the most remarkable person I have ever met - he tries to make me laugh and do all he can possibly do to get us thru this. Each minute of the day he focuses on helping. It all keeps me going..  As do your emails. Everyone does something different.

 

10-20-03

You wrote you'd sit home until the time came.  Much as I would like to, I have never been too much of a person that sits still.  When I was getting the radiation last summer and was literally forced to sleep most of the day, it was frustrating to me because my head would make lists of what had to be done but my body just couldn't carry them out. I'd push as much as I could just to keep up a front for Alan - I hated seeing him seeing me that way.  So I'd drag myself to the beach for awhile or do a few things we'd normally do, but for shorter times. It was all a front - I couldn't talk or swallow since they burnt my throat and vocal cords. But I just didn't - and still don't - want the house to take on the air that a sick person is there.I want ALan not to ever have to remember anything like that.We have been married  - ON NOVEMBER 20th [haha] - 37 years and he has been quite the Prince Charming to me.

 

10-21-03

Afterwards I saw a local R.N., Adria Light, who is a breast cancer survivor herself and she is a reiki master.  She does a beautiful healing service at the local synagogues and said she'd like to try  reiki for these trigeminal shocks - I keep saying to myself that they are stimulating the brain to produce the chemicals necessary to release stem cells in the bone marrow that will mature into natural killer cells...and these will go after the bastards lurking in my body.  May it work - and then there is something positive from the constant electrocution.  After Adria, I did feel a lot less of the electric jolts, until this morning.  Some short-lived relief.   It was restful and helped the trigeminal neuralgia for a short time.  I left there floating and that lasted a few hours.  If only the relief had lasted.   But as the week progressed, the pain returned and was relentless.

 

As for______, she finally called here after about 6 months.  For a few minutes, she spoke to Alan.  Why now...I don't know.  After my surgery, the reports were bad and I never heard a word from her about how the operation went or any concern that it was a metastases.  She can be strange and I don't even bother to try to understand  because it is not in the best interests of my immune system now.  I put these people in a little balloon and float them away.

 

Thank you for your compliments - I don't see myself that way but do appreciate the thoughts---and good wishes.  That is what has gotten me through the last year and 10 months.  One thing we learned going through this illness is how wonderful people can be.  Among the torture of cancer treatments, there are so many blessings, and most are in the form of people.  That is the upside of all this - the best side of people comes out. The medical community around the world has been so reachable, especially with the internet, and they have responded to all our concerns as best they could for such a rare condition.  ALan says we are learning what is their heart and souls of those we know, at a time like this.

 

And the luncheon...I can't even begin to write about all that is happening EACH DAY. It is the best diversion ever.  The phone is ringing or the mail is bringing startling items or stars.  This thing could get huge.  Alan is in contact with an agent who wants to get several well-known personalities to donate their time that day. We'll see but it is fun going thru the process.

 

As for Dr. Check...  he is just the most wonderful doctor around. He is so committed to his patients and staff.  One of my former students [from 1976!] worked for him, Gail Goldsmith [in his in vitro lab] and she suggested in the late 1980's that I should start seeing him for a problem I had. I did go and could not believe the attention and care he gives. Also, the perks Gail got...I will have to tell you sometime about the gifts Jerry gives to his staff.   And now Gail now works for Wyeth but the little close circle we all had continues.

 

Sorry I didn't get to you sooner; there have been so many emails of support this week that I had to resort to answering in chronological order. I am so behind because I only do about 20%  per day, and really don't feel much like being on the computer anyway.  We calculated that this is the 7th time in a year and 10 months, that we have gotten news we didn't want. Eventually we find a way to go on but we just need time to adjust...

 

Alan is very upset and having his hopes dashed like this doesn't help. We are doing the best we can, given the situation. Besides the prayers and good thoughts from so many people,  luckily there is Alan.  He is the most remarkable person I have ever met - he tries to make me laugh and do all he can possibly do to get us thru this. Each minute of the day he focuses on helping. It all keeps me going.. 

 

10-23-03

 For me, I feel better when I am in a daily pattern and I don't welcome  big variations in it. When we had years where we traveled a lot during summer vacations, after a while, I was anxious to get back to my own home and routine.

 

 I had to resort to taking a percocet.  Today was a very painful day with my trigeminal neuralgia. It was such an extreme pain that lasted longer than most and I had more episodes of them than I ever had before in the span of a few hours.  I never did this when they slit my throat or sliced open my side in May to remove the pieces o' lungs.    Amazing what nerve pain / shocks are like. The pill wasn't perfect but I am not increasing the dose too fast.    I am not thrilled about this but you can imagine the pain if I was driven to it. All day the pain kept coming back - most times a bit duller but a few times, it brought tears to my eyes.

 

Anyway, I was supposed to go for another reiki session but am afraid to continue  with it at this point since now I am getting the pain back under control again and after 2 times of trying to reduce it and it getting worse, I get superstitious.  My energy channels must have been mixed up.

  

Autopilot is a great word to describe it.  Items are rolling in - a package from the hockey team, the Boardwalk Bullies, gift bag items from Bristol Meyers Squibb, maybe a script from Dharma  and Gregg, and Kendall Hart [played by Alicia Minishew] has agreed to come to the luncheon too.

 

Yesterday was something new in Longport.  They are holding a luncheon each month, sponsored by local businesses,   at the ballroom in  City Hall - the entire town is invited!  And  it was Alan's birthday.  It is free and all you have to do is RSVP.   Last year they started this and for a trial only did a few and only seniors were invited.  The room looks out over the harbor and the ocean so it was peaceful.

 

Then in the evening, was the zoning meeting board meeting [Alan managed to get on this years ago and has been 'promoted' to vice chairman].   After the zoning meeting board meeting last night I brought over a birthday cake for ALan.  Had to  sit thru till the end of the meeting [ the latest one ever] when the cake was cut.

 

Today was nice, enough to walk on the Atlantic City boardwalk  since I had to drop something off at Bally's Casino.   Almost all the casinos have taken out an ad in our April 18th program book.

 

Ice cream nights rule!  Every night has to be ice cream night.  I never tire of it.

 

10-24-03

What Dr. Smith has explained to you, has been told to us over and over by almost every dr. we have spoken to [if they don't say it, then we know they are not worth their salt, don't understand the nature of the beast and get out of there]. We have a counter-part of Dr. Smith who is also in his 70's - at Hahnemann Medical College in Philadelphia.  If you get a chance look him up  on the internet, Dr. Luther Brady.

 

It always amazes me how lymphoma patients tell me their dr. says that they will be cured in 8 months.  What beautiful words...that we won't ever hear.  It is a wonder to find someone like you who understands it all. 

 

You found out what I did - that leukemia and lymphoma are bad but not like ours.  ANd they have a whole Foundation that is heavily funded and conducting research; that is how they got the drug gleevec.  That is the type of situation that prompted Alan and I to get the Foundation going.  The L. & L. people are well on their way and have so much financial backing.  We are fledglings.

 

Actually, I never expect my life to return to any resemblance of it b.c.   It is way too late for that...the areas where I had surgery and radiation will never get much better than they are at now,  so they will always be a constant reminder and I am fine with that. I just don't want any more.  You pep talk is motivating and I will hang it on the refrigerator to always remind me to stay out front. You are the best role model since you have managed side affects extraordinarily well.

 

You made a lot of sense - not that we get a choice but in a way we have.  An extended hospital stay from an accident wouldn't be up our alley at all.  We like to move and shake.  SO we are lucky we have thymic and can be out front most of the time. 

 

A few more opinions this week made all the difference in the world; my thoracic surgeon was not upset with the scans at this time.  He doesn't like PET scans to begin with and likes hard evidence.  So 3 months down the winding yellow brick road will take me to the scanner again so they can see how this all plays out. 

 

In the oncologist's office the other day, my blood pressure  was up today to 160 over 110. So what else is new. 

My blood pressure has been high off and on over the last 15 years; I monitor it at home and when it goes too high I take atenolol.  Lately it has NOT been high; the neurotin does keep it lower.

 

The ads are coming in too - almost each casino has taken a full page ad.  We just heard from Lynn Redgrave - this could get huge. She is recovering from chemo and radiation for breast cancer.   She may be in Europe in April though.

 

Yesterday it was someone from the Will and Grace cast - everyone is dedicated to fighting cancer since it seems to have touched all of their lives. Wouldn't it be amazing if we could get Sean Hayes or Harry Connick, Jr..   It seems to have exploded. We got an account for credit cards - had to.  Agents are calling to see if they can send a v.i.p. bus load of actors down.

 

10-26-03

Yes, the broccos go well with everything - stick them in a burger or steak sandwich.  But my latest batch, which hasn't happened in a while, got that odor. Yisch.

 

Today I did have about 70% less of those new awful long-lasting shocks.  So let's keep it going in this direction.  Eating is still very difficult.  Even air in the mouth stimulates a shock - like a yawn or cough.

 

That reminds me.  I picked up a hot rack [that should not have been hot - we don't know how it happened] and I have a one inch fluid filled blister on my palm.

 

 So we are selling tickets like crazy. People up and down the Atlantic coast are putting them on their  credit card.  We have a Pittsburgh, PA. ticket buyer.  Maryland.  Boston.  It is wild.  The luncheon  will be a fun afternoon; people are even  buying tickets now to give as holiday presents. We expect to be sold out by Christmas - tickets have sold from as far away as Virginia.  Each day surprises us so keeping focused on this keeps the other out of my head a while.   In fact, just now ALan said someone in Tampa, Florida bought 3 tickets.   We need to put up a map with push pins.

 

We will have about 50 auction items [silent and live] plus a few dozen door prizes. Everyone gets a gift bag.  I need help making them up - 300 of them.

 

No more reiki.  As the week progressed, the pain returned and was relentless.  This is exactly what happened after the acupuncture, too.  Before the treatment with the acupuncturist, I had, on my own,  improved about 15 % with the neurontin. After the treatment, I felt good then for a hour or so and then the pain came back to 100%.  So I had lost all the gain I had made with that month of medication.

 

10-27-03

Each day there is something that sends us cheer because of the giving nature of people [either by email, phone, or the mail].  And there is so much to do.  We are delirious.

 

10-28-03

We can start to take the trigeminal neuralgia off the worry list - yesterday and today all the prayers and good wishes are working. I hate to even write it, superstitious as I am,  but finally, the shocks are less and less sharp when I have them.  The neurotin is kicking in. Whew. It took its good old time this time around. It is not gone but it is on the down side. Only aspirin now.

 

Sorry I didn't get to you sooner; there have been so many emails of support this and last week that I had to resort to answering in chronological order. I am so behind because I only do about 20%  per day, and really don't feel much like being on the computer anyway

 

10-29-03

The items are getting more and more awesome.  Lew Katz is donating a team-signed basketball...he owns the N.J. Nets { I don't follow this sport but there are lots that do}.  He also has a partial interest in the N.Y. Rangers and is getting us a signed hockey stick.  He is another long story.  I think I told you he has a summer home up the block; his sister and I are very good friends since she just had chemo and radiation and we became a support group for each other.  

 

You  wouldn't believe the last year and 10 months.  It was a nightmare. OUR friends helped us make it through and joke that I am the healthiest looking cancer patient that they know.  The website is below and you can read all about it when you have time.  Take a tranquilizer first.

 

You don't know how much your prayers mean to me. That is the best help you can give me and about all we need right now.   We know how important it is to have a lot of people praying for us.  It's worked so far.  That is why I am still here. SO why tinker with a great system.

 

And it was doubly touching that you offered your help.  Everything is under control now but we surely appreciate the kind offer.  What we told people when I went in to Penn in May for the lung surgery was  to just support the Foundation and that will bring me comfort and cheer.   So they did - we had an Aerobic-thon in July and a lot of people made it a success. It was a small fundraiser but it helped get the name of the Foundation out there in the public eye.  I couldn't have flowers at that time since the pollen would have made me sneeze and I couldn't due to the pain of the incisions for removing the lung lobe. 

 

So now all we ask is the same - we are telling people to sell tickets for the luncheon and sell ads for the program book. It will be such an uplifting event; I can't even describe it to you.The excitement is always contagious. And that is good for your immune system.

 

And more actors are coming down for no compensation so we are thinking we should make them gift baskets [like the Academy Awards gives but not at that face value].  I just love to make work for myself so now Alan is on the internet trying to find businesses to donate items  for the baskets. Like watches or whatever.

 

Breakfast was great today - good company and view and delicious waffle.  Doesn't get better than that . You would have liked Gilda's - most of the time we sat and talked to some lovely women and the foot massage was optional.  Then they had a fantastic lunch made for us.  We couldn't believe it. Like the Four Seasons - 2 soups, homemade bread, pasta, cake, trifle...   What a place.  We felt uplifted when we left.

 

We understand about how you feel about paying your share of the check.  But sometimes I like to take care of it - I know we don't have to say "I had you so now it's your turn to have me" routine.  But you are so especially good to us to have us for a lovely holiday dinner [with a view that doesn't quit] that I do want to reciprocate once in a while.    I used to be able to do the company thing in the home but something is wrong now and I can't just yet. So my way of reciprocating is to bring lots of goodies to help make the meal easier for the host or to take the host out occasionally as my way of thanks.  I hope you will indulge me once in a while...

 

10-30-03

This is going to work out well for Resorts too.  Many people will be staying over at Resorts so they will get the benefit of the group for meals and gambling.  I am glad they will get the revenue because they have been so good to us.   I bet after the affair, people will be so keyed up they won't want to go home but to continue the party on the casino floor. This may start a trend in this type of event here - usually they are in New York. What a lot of work - mailing tickets, etc.  The internet has propelled this into a frenzy.  One ad in one magazine got picked up by the actors' websites and that was it.  We joked we'd be sold out by Christmas but at this rate, it could be sooner.

 

Tonight we got some news about Alan Zakuto. He is one of our closest friends [he's 58] had a bypass of 7 vessels at Einstein.  They said he can go home on Tuesday.  It is miraculous what they have mastered in cardiology.  Everything was clogged like a cheap toilet ---he needed one of those Profi tools.

 

 He had a stress test yesterday and FAILED after 2 minutes.  He is in Einstein and had angioplasty today.  It is not good enough - he needs a bypass for 7 blood vessels. Five hours - not as long as a neck dissection, uh?  What a story. He has been having trouble just walking for 2 years. ANd he put all this off and off and off...some dr.  Just the other week, we all met in Ocean City and strolled on the boardwalk and ate custard and marveled at the lovely day.  We both appreciated  the time out and that they  met us over there; it helped take our minds off the news for a while.

 

Luckily that was the worst of it last week and now, in small degrees, those longer-lasting episodes have ended.  Thank God - if I were a horse they would have humanely shot me.  Now the regular episodes even seem to be decreasing though once in a while, like at dinner, I had a nice lightening bolt strike...but for seconds. So decreasing the neurotin is a ways off.

 

10-31-03

As for the lit up lymph node, it was lit up [at a lesser degree] BEFORE my lung surgery and the thoracic surgeon found no reason to remove it then.  Every one bows to his judgment on this because he was in me and we hope he saw it.  We did ask him after the surgery and he said it didn't need removing.  Our TWO oncologists have contacted him this week and told him of the scan and he said that he doesn't like PET scans and goes by the CT scan which doesn't show the intensity of the lymph.  They all want to wait 3 months, re-scan and compare.

 

My worse problem is my face pain.  The other morning the TGN was at its very worst. The pain was unbearable and I don't think I could ever explain how bad it was [it was at the point where I broke down and took Tylenol with codeine].  I didn't need that for the neck dissection or lung surgery. It was prescribed, I filled it, and never took it.  Isn't that amazing.  The next day it was even worse so I had to  take a percocet.

 

 Take these trigeminal shocks - I keep saying that they are stimulating the brain to produce the chemicals necessary to release stem cells in the bone marrow that will mature into natural killer cells...and these will go after the bastards lurking in my body.  May it work - and then there is something positive from the constant electrocution.

 

Like you say, focus on the positive.  Luckily we live here and have met a lot of people that are determined to help in ways I enjoy.  They know we never tire of looking at the ocean or walking on the beach or boardwalk. So the other day 3 couples called and we all met in Ocean City and strolled on the boardwalk and ate custard and marveled at the lovely day.  We both appreciated  the time out and that they  met us over there; it helped take our minds off the news for a while.  Being with people we enjoy for a while is very therapeutic and we  especially find that activities not associated with eating are best.

 

In the meantime, we  are very focused and keep busy with the event so that is such a big help.  Each day there is something that sends us cheer.  An agent today called and is hoping to get some big names down from NY so we will see what she can do.  We had to go to Resorts to see about expanding the room.

 

  Like you, I have had signs...or a multitude of coincidences, day after day.  I take them as good omens.  Let's hope they are from our guardian angels.

 

You asked about the signs I have had.  They happen daily. We were at a memorial service for the brother of the builder of our patio [it was on the bay, in Somers Point, Kennedy Park]  on Sunday.  Did I tell you that in January he got cancer in the neck [I don't know what type - all the family knows is 'squamous cell' - some people don't get or absorb details].  At first we were closer to the water and it was cold so  we moved out of the wind  and ended up standing next to the man, Bill Elliott who started the hero campaign for his son who was the cadet killed by a drunk driver.  I spoke to him and his wife, Muriel. Some public relations campaign he has done, uh? Well neighbors of ours are their friend and have been wanting to have us meet up with then so he could help with the public relations for our event.

 

How do you like this one.  ALan found out on Amazon.com that someone wrote a book AND I AM MENTIONED IN IT.  It is a book called, "Sexual Harassment and Higher Education: Reflections and New Perspectives [Garland Studies in Higher Education]. It is by Billie Wright Dziech. $70.00.  How amazing is that. A coincidence, omen or whatever.

 

Here is a good people story; you know how it is when you are going thru this life saving treatment and then worry for each scan.  This lady,  called me today and complained how big the pill is the dr.   prescribed for her non-existent condition.  She has been tested for years and nothing is wrong; she probably just needs beano.  But she pursues because she WANTS something to be wrong; I can barely listen anymore .  ANd today when she started how she wants a smaller pill I nearly slammed the phone down.  What if she REALLY had something to worry about.  My throat is so narrow now and you should see the pills I CAN get down.  How dare her complain to us.

 

She also complained about going to a restaurant and having to split the bill with another couple and hers was a little less. I had to get off the phone.  Don't you love people with too much free time on their hands and THEY ARE HEALTHY.   What gives?   She is so lucky she can eat, to begin with, right? I spent 4 months not eating and it took even longer to get myself to go to a restaurant because I couldn't swallow.   Then with this trigeminal pain, I can't eat out, because I can't really eat much.

 

Alan and I enjoyed the program with Pam Novotny [reflexology - a special foot massage] so much and we especially had a good time meeting the other members at Gilda’s that came and sat around  while we waited our turns.  We left feeling very light-hearted. It is always a help to have someone around that truly understands what we are going through. 

 

Next week we will go back and meet Christine Perillo, the chef - she is making  dinner.  A first I resisted going to Gilda's but it was not what I thought and it is a big help to both of us in dealing with this ordeal.

 

11-1-03

We are doing the best we can, given the situation. Besides the prayers and good thoughts from so many people,  luckily there is Alan.  He is the most remarkable person I have ever met - he tries to make me laugh and do all he can possibly do to get us thru this. Each minute of the day he focuses on helping. It all keeps me going.

 

We may raise the price of the tickets if we get a really huge star.  ALan changed the site to 'sale price = $50.00.

 

11-2-03

Yes, it is small degrees for small periods of time so I am grateful for that.  I am learning how to eat very carefully and avoid extra jolts.  I know I can't bite into anything but I have to cut it in small pieces.  Now I belong to "Slow Eaters of America."  S.E.A. = how appropriate. Since I am a mermaid.

 

Alan and I are amazed at ourselves.  We never realized the scope of this type of affair.  Sometimes we just look at each other and know that if it weren't for truly wonderful people around the country, we couldn't pull this off.  I was happy there was no mail today - we got a 'sabbath' from the envelops and reservations coming into our home that way but the internet still was busy.

 

The weather has been perfect here too - isn't that scary. Today was about 72 [my best temperature] and so was yesterday and the previous 2 days.  We just don't feel like staying in. Yesterday Alan took me on the back of the cycle [his tee shirt reads, "If you can read this, then the bitch fell off," and we tooled around this beautiful area on the bay in the marshes but there were docks there with boats. It is behind Bubba Mac's and no one knows where I am talking about - it is hard to find the road back there.   And because of the warm weather people were taking the boats out in droves.  There was a tiny beach and we never wanted to leave.  This is 10 minutes from our house and in 14 years we never found this spot. It was so rejuvenating. 

 

Today we walked into the next town to get a Sunday paper and came home by walking on the beach. Tons of people fishing and sunbathing without shirts [guys only].  no one can believe it is November.

 

Cancer = zero

Larry and Barbarella = life

 

Maybe if the I.V.F.cycle at Dr. Check's does not get the amount we want, we ill put it on EBay.  We just never imagined that. 

 

11-3-03

We went to our city hall since that is how they want Halloween here .You take your candy there and sit on the porch and wait for the kids to come.  I wore a bat headband. 

 

11-4-03

We Scorpios can not be betrayed. That is a mortal sin.  It has been an eye-opener with the April 18th affair.  People say what can I do to help - you'll find that a few don't mean it at all.  Because I'd answer that they can support the Foundation with the Luncheon.  These are people I have known for decades. Now I am hearing all kinds of excuses of why they can't buy tickets, etc.  Most say it is too far away. Well. . . B.S.  These same people book cruises a year in advance or buy theater tickets, plan weddings.  I don't want to hear it.  It will be my pleasure now to say to these people, "Sold out." And it will really be their loss.

 

Alan’s knee cartilage has a tear and the orthopedist says it is up to him to decide what he wants to do.  Alan is choosing to wait; the pain, he says, is not too bad.

 

The oncologist wants to wait until I am re-scanned.  She'll make a decision based on if the suspicious masses are still present and are bigger.  She would suggest Dr. Loehrer in Indiana, she said, for his trial on Iressa.  She said she could use standard chemo too but I tend to want to try the other.  After a month on the drug, they re-scan you and if the masses haven't decreased then they try something else. Don't you love being a guinea pig.  Here we are trying to stay alive and so many people are killing themselves with drugs, tobacco, etc.  Makes you wonder about a lot of things.As always, thank you for the prayers and good wishes

 

We were in City Hall voting and when we went in the weather was warm and sunny and lovely.  As we were leaving, the sun was gone, the temperature dropped 30 degrees, and there was a low fog all along the ground blowing along down the block. What a surprise.  To think, in the morning we had the hose out and were cleaning up the yard.  Yesterday we had one man trimming our shrubs and another power washing the house.  Tomorrow if the weather holds out, a painter is coming to re-paint our pillars and the outside of our front door. And our gingerbread trim. 

 

I understand about eating out; I generally dislike it.  The restrictions in my esophagus left from the surgery combined with my horrible cholesterol [which now came back as 452], has created the situation that we try to stay out of restaurants on a regular basis.  But it seems as if,  most people's social lives revolve around food.  We have so many other things we could do besides eat with people.  We like to walk on any of the boardwalks or beach, bike, etc.  It is easy  here. Both of us are small eaters anyway [they found I have a hiatal hernia too so I have to eat early] and most people we know eat late. Which is definitely not healthy at this age.

 

11-5-03

Every step of my road led me to Alan, like yours did to Steve.  This summer was the 40th anniversary of our first date.    ANd without him, I could never have gone on this journey... so unlike other travels we have taken over the years.  For this one, you truly need a Prince Charming.  

 

Last winter I found flannel p.j.'s that have pods all over them and they say 2 peas in a pod all over so I HAD to buy them.  Alan and I have always been that way - and 'they' said it wouldn't last! HA! What do 'they' know, right? 

 

Like you, when you bought the outfit at Macy's on sale and said that you hoped to wear it ---I always say things like that.  How you feel about life and how the news of the cancer hits you when you are told is another point in common.  Most people have no idea what we are dealing with mentally. Only ONE friend understood; she said she had a dream where the dr. told her she had cancer and she woke up remembering how she felt.  At least she woke up from the nightmare.

 

Like you, reading Karen's email was upsetting.  She is like our living guinea pig.

 

The advice for the 'friend' who needs attention to visit a chemo ward is too idealistic.  She had a best friend on chemo for 3 years for ovarian cancer.  She minimized the whole experience.  I'd ask her how ____ was doing and she'd always say fine, like ____ was having a hangnail.  She never really GOT IT!   She'd call an operation a 'procedure' again minimizing the seriousness of what  ____  was going thru.  I hate that.

 

 We love this auction item;  Jerry Blavet [he calls himself the geator with the heater] is a local d.j.    He is donating a 9 C.D.set of Oldies music. 

 

As for the trigeminal,  today was my best day so the neurotin is finally kicking in...it takes 2 months. And it is right on time.  I had my first real dinner in 2 months.  Chicken parmesan ---it was so good.  Now if they had a similar pill for the ailment I don't feel ...right? Then everything would be right with the world.

 

When you go to these doctors and hospitals the talking does take up a lot of time; they take a personal interest in us which is nice.  It makes it less fearsome going in to see them.  Certain ones I look forward to because we share a lot of interests.