June 7 to July 4, 2003

 

 

6-7-03

 Today we both got reiki massages.  Going in, Alan had a pain in his leg and neck - he's had it for a few weeks.  And now they have subsided.  How do they do it.  My woman massaged my neck and shoulders a lot to try to loosen up a lot of my scar tissue that feels like it is squeezing the hell out of my neck.  It did feel good for a while.  I do my best to feel the positive thoughts people are sending our way. I try to 'receive' them when I start to get negative.  Hard work.

 

6-8-03

It is very tiresome seeing drs. all the time. Broke in a new cardiologist this week because every dr. said I need one close to home...in case.  He was very good------after we got started.  At first, we weren't sure.  He had some good ideas.  And I will get a stress test in July when I am more healed.  The last one I tried was a half hour away and let me fall thru the cracks. Did I tell you that story.  She was supposed to set up a stress test BEFORE my surgery and she did not. Pre-op cardiac clearance, et al.  Other problems with her too. 

 

Then we had an appointment at another oncologist here since we need one to coordinate whatever the Phila. oncologist prescribes.    Monday was another long wait at PENN, but Dr. Evans apologized [which the Fox Chase guys did not] We think we can work with this one.  The only other 3 are very objectionable if you remember my emails. We took a tour of her facility and it was lovely and calming. They have a chair, which you lay in for the chemo infusion [which can be a 7 hour ordeal each time].  It massages you the entire time and can play music to you and it vibrates.  They believe in a holistic approach using reiki and acupuncture to treat side affects.  It is the only site we visited where I didn't get chills and depressed.  So we made an appointment for June 20th for her to examine me and go over my records. 

 

A vicious flu is going around in these parts these days. Maybe the weather bred new microbes to attack us this spring.  Too many people have told us they have it.   That is why we are avoiding most people.  A cold would kill me now - they are afraid I'd get pneumonia from it because the lung and chest have a lot of healing yet to do. So please - WE'D APPRECIATE IT IF YOU don't hug Alan either - even if you aren't sick, you could be carrying the germs from someone else you visited and he could carry them to me since he takes care of me, even if he doesn't;to get it.  We can not be too careful.  .  . this lung that is missing is nothing to joke around with.  Cross contamination is a major issue since Alan hangs all over me.

 

6-9-03

Today we went up to Penn to meet with the oncologist.  She is the one we are leaning towards.  She offers us some new therapies possibly, if there is a recurrence. It is all so technical, depending on if I have certain receptors / markers, that I'd have to be tested for.  At least she was honest and we didn't have to try to extract information from her.

 

 She is the one John Glick recommended and actually had some good ideas that she learned last  week at the national oncologic symposium. She would try biologicals as  opposed to chemo, if at all possible.  Biologicals - certain ones -  are not  as toxic so they don't make you as sick. And you may not lose your hair.  But we'll cross that bridge when we get to it ------and let's hope we never get to it. N'est-ce pas?  She was very forthcoming and small things like that now are comforting.   Of course it was exhausting for me, all the hours of driving, so I slept like a zombie when we got back.

 

Sleeping is better now since the reiki massage [I have had 2]; still there are some of those semi-awake moments during the night are not great [the mind plays negative scenarios].   I am eating much better and not thinking at all about my old low fat diet. After our appointment in Phila., we went to a restaurant that we hadn't been to in years.  It felt good to be among healthy people doing normal things.  Those medical oncology waiting rooms are so depressing - very ill people, some with vacant eyes, and people that just look totally torn apart.  We never felt that way at Shore. 

 

What you sent  is just so useful.  We have heard often, 'think positive, stay calm,' but no one ever tells you HOW to do it.  I had never read anything like that before and appreciate the time you took to find it and type it in for me.  I have printed it out and am referring to it often.  A few of our friends have different types of cancer and I will sent it to them also.  Everything helps.

 

When people ask what they can do to help, now I have an answer.  How do you have such insight.  Just finding material like that is a gem.  We are putting together a book [some day] and this type of information will be good.

 

6-11-03

Today we had an appointment at Gilda's House.  It just opened in Atlantic  City .  It is one  of 14 around the country started in memory of Gilda Radner,  by her husband, Gene Wilder.  It has programs and seminars to help the  patient and family deal with cancer.  I never ever thought I'd go to  anyplace like this.

  But it is quite necessary for the community and very upbeat - they have  cooking  sessions [you will LOVE this - they had Christine Perrillo there  but I didn't know it so I missed it], speeches by oncologists, and we are  learning how to cope with follow-up appointment anxiety. As you too well  know, having tests and waiting to see if 'it' has come back is sheer hell.


 We loved the house it is in - designers did each room. Many pulled out all  the stops because cancer had touched their lives.  They made us lunch and  couldn't do enough for us. We both left feeling better able to handle the  challenge of the next leg of the journey.

 One of our neighbors helps out there and volunteered to take me to a session  soon.  And our friend's mother-in-law is on the volunteer list and she  called to see what we could use.  It seems to be a popular place for people  to volunteer these days. Months ago, I had planned to send in the form to  volunteer and now I have to be on the other end.  It is a new building by  the inlet and it has a lot of funding, including the Casino   development
 Funds.

 They have trained facilitators conduct sessions for stress reduction,  relaxation, and they find lecturers to come which is terrific.  One was  there from the NIH [and we missed that too].  We are on the list now.  There  is no fee for membership.  They have a room for children with cancer  [Noogieland] -  so sad.  You can read about it on  www.gildasclub.org

 We had loved watching Gilda on Sat. Night Live.

Dorothy in the Wizard of Oz said that 'I have found my life's desire in my  own backyard.'  Those who climb mountains and search for decades doing  dangerous things are really unhappy and trying to prove something to  someone, meanwhile wasting their life instead of enjoying it.

6-12-03

Here is this little story since it reflects my med tech training.  The problem is I had one microbiology course too many.  Most people wouldn't even have noticed this.  And remember, I was especially pleased with all the Penn staff that took care of me  ---it was just this one incident that I experienced.  One of the medical staff came in to change my dressing.  He very carefully opened the sterile gauze pad and then surprisingly, placed it on the seat of the visitor chair.  He carefully proceeded to cut strips of tape and put them across the gauze so it would  adhere to my skin.

 

Now this is my problem.  You know the kid from the 'Sixth Sense."  He saw dead people.  WELL, I see germs everywhere - when I taught micro I'd make up little scenarios for the class [sometimes my inspiration would come from a news story that just reinforced what I have thought all along; other times it was from seeing a blatant example].

 

Well,  the  young staff member looked puzzled when I said, "you aren't putting that on my incision, are you?'  I told  him that the seat had a host of microbes on it from people who had placed objects on it or sat on it -their clothes or skin could have had any variety of contaminants.  If  he had put the dressing on me [the side touching the chair would have been touching my skin].   To avoid any  cross-contamination we asked him to please find a clean surface and re-make the bandage.  He was so lost and didn't know what to do. Alan got him a fresh towel.

 

You are so right - 'gradual' is the key word.  My body tells me when I have done enough because I get tired.  And as long as I know that it is normal.

 

6-13-03

Today I saw my radiation oncologist for a follow-up and both he and his  nurse spoke so highly of Sheila, the nurse we got guidance from yesterday at Gilda's house in A.C.    And they felt that was a good path for us. I like when science works with these other methods.  Dr. Cassir firmly believes they work ---why didn't he tell me last year.  He even said he meditates every day.  It seems it is time very well spent.    We are trying to implement it each day.  We ordered tapes with subliminal messages [no - not the ones that say rob the convenience store but ones that instill in you that you are clearing your mind, YOU ARE HEALTHYetc.]. 

 

Aside from that Dr. Cassir agrees with the other drs. about the path we should take.  He examined me thoroughly and is pleased.  He is always so positive and thinks my neck is healing well despite the fact that it is still so painful.

 

We also went to Boscov's because they will help promote the aerobo-thon for July 12th. We are working hard now on trying to get people to register and  hoping Boscov's donates an ad in the PRESS. That would help us a lot. We have to get funds to get this foundation going so we find a treatment...in time.

 

  The public relations manager told us about a $5.00 ticket we can sell to people for Oct. 7th where the purchaser will get a 20% discount at any Boscov's in any state on that day.  Plus it has a tear off for a door prize that the purchaser deposits in the raffle box of their choice in the store since there are door prizes for almost each department that they could choose from.  And I think any item over $15.00 will get free gift wrap for the holidays. No one can lose by having one of the tickets.  SO if you want some tickets to sell to co-workers, friends or to  neighbors,  I am getting them and can give some to you.  We are looking for volunteers to sell them.  The entire $5.00 for the ticket, Boscov's  will donate to the Foundation for Thymic Cancer Research.  If we sell 100 tickets, then we get $500.00.  It is amazing for Boscov's to do this. It is a great gift for someone.

 

It was impressive that there is such good follow-up and concern over all aspects of the patient care at Dr. Hollander's office.  It is nice to go to a practice where the patient doesn't fall through the cracks.

 

 There are no words to explain how grateful I am that people  try to think of some way to help, especially if they can send on our information to someone else who may have more answers.  This is one journey no one should ever take alone and it is wonderful that there are people to help us along.   We have learned one thing from all this - there are some people that show great compassion and they are a gift.

 

Alan, my husband,  has used the internet - sometimes for 18 hour days - and it is a tremendous resource for our research.  It has helped us at each step of the way.  We have file folders with thousands of replies from all over the world and from the most knowledgeable institutions and experts.  We know  deep in our heart and soul we have done everything possible.  We would never have been able to find or contact so many physicians 'the old-fashioned' way.

 

When you return, it would be great to meet you and talk about how your practice can help in my medical care

 

It is just a matter of choice who you enjoy spending time with since life is so short.  Why waste it with people that don't share your philosophy.

Last weekend a friend was down and had some people over and asked us to join
them.  We would enjoy being with her and one of the other couples.   But
there were 3 couples there that I felt like I didn't want to share my night
with - none of them have called or sent a card during this latest siege.  We
didn't want to have to answer their questions or 'catch' them up now at
their convenience and at the expense of our stressed out nerves.  One of the
ladies is so involved in her own superficial cosmetics just for herself
[she'll bitch about her nail   polish chipping for 40 minutes non-stop,
etc.] and under normal health she is hard to take but now it would be cruel
to listen to her whine. So we didn't go.

 

Except we are making new rules to keep stress out as much as we can.  Sometimes I worry that our frantic lifestyle back when we worked may have set the stage for this awful disease - I have read how stress breaks down our immune systems and that is when these dread diseases creep in and take over.  I'd hate to see even my by worst enemy go thru this.  If you can take away anything from my ordeal, then may it be to ONLY do in life exactly what you want to do and enjoy.

 

Speaking of the body, the hospital gave us the lab tests from last Fri. and my cholesterol jumped to 471!!!!!!

 

This happened last year after the radiation - it went up 100 points away from my 'normal' 375.  Don't you love it.  I think I can figure out what is going on though. For a month, between the surgery and hospital and drs., I forgot to take my synthroid for my burnt thyroid.  And last week I remembered because my hair started coming out again. SO I started back on it but as happened last time, the drs. saw how high the cholesterol rose and said that is part of the non-working thyroid syndrome.  Man o man.  Never a break! 

 

6-15-03

You and I always share 'people ' stories.  My other friend would put this in her category of 'people with gall.'   Friends from the beach we sat at in Margate [when we had our condo there] walked down to keep us company [7 blocks] yesterday and it was nice  to know they wanted to see how we were. We felt happy about them taking the time to walk over.

 

For the last 4 years [I think I told you] we trudged down to the Margate beach with all our stuff and paid to keep the chairs there to sit with this group of almost 20 couples we always sat with and now 'the others' can't take turns bringing their chairs to sit with us when I can't do that mile walk now.

 

Today was nice for a while so we took our books to read and chairs down [Alan wheels it all in a kid's wagon - people in Longport pull wagons, it is unique to our beach].  Well, it was a nice surprise.  4 other people brought beach towels throughout the afternoon and came to sit with us and keep us company.  We are learning who to count on - all the chatter and company made me forget the last year and we both felt so normal for a while.  It really was wonderful. At one point there were 14 of us in a circle.


Did I tell you about our new umbrella - we got it at Shoprite and it looks like a tiki hut. Layers [plastic] of 5 inch strips of tan 'leaves'.  It is the talk of the beach. And everyone knows where to find us. There is no other umbrella like it.

 

6-16-03

Our days have been filled with taking care of insurance snafus, making appointments with drs., and trying to research this dread disease.

 

Reiki  is 1000's of years old and the basis, from what I am learning is the person transmits energy they get from God into your body, for healing and relaxing from stress. Sometimes their hands touch you - other times they are over you.  There is a lot of visualization they guide you through.  If you  look it up on the internet maybe you can understand it better than I can explain.  It is being integrated into cancer therapy now at many oncologists.

 

There is something about meridians ...but lots of it is based on stuff they can't test right now because they don't know how. When they do...I am sure they will find that the interaction between the therapist and the patient is part of the deal. When they tested the healing effects of "Healing touch", or whatever they called it with the nurse not even touching the patient, and the patient not knowing they were getting the treatment -the wounds healed faster. Magnetic energy??? Who knows. It may be something about polarity [you know, positive and negative poles].

 

6-17-03

...we just got caller I.D.   We have resisted all these years, just like the call waiting feature.  We only got that last year so if we were expecting calls from drs., they could get thru and we wouldn't be kept from using the phone all day.

 

YES,  I started synthroid 2 weeks when I remembered but the hair is already dead and keeps coming out.  As for the cholesterol, the only thing I can do is exercise...it is unanimous with all the drs. because I can't take the cholesterol-lowering drugs.  We saw a new cardiologist and he understands my chemical sensitivity; he is doing a stress test in July when I can walk and breathe better.  This whole issue is the furthest thing from my mind right now......  it hasn't killed me to now and that is what the drs. had promised me for decades.

 

6-18-03

My mother has a brother in Warminster [my uncle] and we did not hear from him for the first operation or the radiation.  He sent us a CHRISTMAS card from FL. bemoaning the fact the weather was bad and never a word to how we were [he knew about this disease - others had told him about me ].  He minimizes our ordeal by not even acknowledging it.   Then out of the blue, he called Nancy last week.  When she called to tell me what he said, I said don't bother - he's dead to me - it is too late.  When I needed a family he wasn't there [the bottom of the heap] so we don't want him in our life now. He has been replaced by friends that are the cream of the crop [you fit in there].

 

 

6-19-03

Here is a people with gall story.  This past weekend, this lady, Ann, said she will be here all week and will be available for anything we need.  In theory that is nice, Right?  SO she said she wants to come sit on our patio and show us some of her son's wedding photos.  I said the only time good when we didn't have drs.' appointments would be Wed. morning.  So we made it definite -I said I'd make coffee and cornbread for breakfast.

 

This morning I got up and set the table and ground the beans and baked the bread and didn't hear from her so I called at 10:00 and said it is in the oven.  She said, "Oh, I am not going out because I don't want to walk to the car in the rain."!!!!!!!!!!!! You can imagine my reaction.

 

I was livid.  What the hell kind of excuse is that -she isn't suffering from radiation or chemo,  any disease, etc. How dare her offer to help. And then not come because of a bit of rain. I just got off the phone.  She called later when we were out and said "It is nice out now and I want to take a walk over." We don't need friends of convenience at this stage. Guess I was brought up differently. She didn't give any conditional or contingencies when she offered.

 

That woman  who wouldn't come over that morning BECAUSE OF THE RAIN DROPS keeps calling and leaving messages that the weather is decent SO SHE CAN COME OVER NOW.  Is this gall.    If you look up 'fair weather friend' in the dictionary, then you will 'see her piXture.' HAHAHAHAHA

 

6-19-03

I don't know what I would have done this past year without Alan. He is a superhero to me - a real life Prince Charming.

 

6-20-03

 

Today we met the local oncologist we would use to only coordinate our Phila. doctors.  I hope she is o.k. [healthy] as she looks so thin as to be anorexic.  Her husband is the office manager.

 

The prayers are helping - I am here [it has been a year and a half since this all started].  My radiation oncologist, Jorge Cassir, even said that the more people praying for me, the better I will do.  SO thank you in advance.  He also told us he meditates every day ---now why didn't he tell me this last year before they barbequed me each day.  I could have planned ahead

 

We are waiting now -  nothing  can be done until I have my next CAT scan. That will be August.  We all pray it shows nothing.  Then we go from scan to scan.  If it shows anything, then that will have to be dealt with and that is the frightening part - how will 'they' deal with it. Trying mediation and reiki to stay balanced and calm.  Some valium.

 

Alan uses the new motorcycle - he LOVES it and comes back rejuvenated after each ride. I went to Casel's on the back for a dinner roll.  Still a bit bumpy for me. 

 

 We are trying the reiki, a new meditation tape and to think positive and remember that the doctors are not God. And we know medicine does perform all kinds of wonders these days.

 

We are back to trying to do normal activities each day, in with the medical visits and calls and research.   So we are back to working on our April 18th celebrity auction luncheon at Resorts Casino [the President of the casino is being helpful and underwriting some of the meal's cost].   We have been getting fantastic surprises in the mail for our July 12th Aerobo-thon and for the April 18th luncheon.   One company sent us 150 tubes of  cream for aching muscles which we will put into each participant's gift bag.  A restaurant gave us some gift certificates for door prizes as did the boardwalk amusement pier.  A publisher of a soap opera magazine sent us super cool night shirts that are embroidered with "Guiding Light," etc.    We have learned one thing from all this - there are so many people that show great compassion and they are a gift.  These have been the  bright spots we have had recently. 

 

6-23-03

The enormity of what the oncologists  have told us is sinking in slowly.  It seems like there is nothing that can be done until I have my next CAT scan. That will be August.  We all pray it shows nothing.  Then we go from scan to scan.  If it shows anything, then that will have to be dealt with and that is the frightening part - how will 'they' deal with it.   Yes, Dr. Evans is the one who promised to discuss my case and she has.  She hasn't learned anything new though.  It is very hard to live this way so we hope the tapes and books can help.

 

All of my friends that had some form of a common cancer [like breast or lymphoma, etc.] would always  tell me that their drs. say, "No matter what you have, we have a treatment for it."  Last year, when this started, none of my drs. ever said that to me.  That was upsetting.

 

6-24-03

We are busying ourselves reading a lot of books [on how to meditate] and listening to tapes [regarding how to relax and limit stress] and that is the most important thing we are learning now. ["Enhancing Massage" by Steven Halpern  The mind has to be controlled.  No ifs.  We bought a tape with subliminal messages that we go to sleep by. It is totally astonishing,  I sleep better and wake up more awake.  And I haven't had those 'dark' thoughts in the middle] of the night like I had been having since we saw that awful doctor on April Fool' Day. I think if we studied this when we were younger, we'd have been healthier but I also think I'd never get any work done since it is all 'live in the present * live in the moment."

 

Today we bought something I really craved. There are just some things you can't buy in the store. We went to Appleby's and they sold us a quart of their salad dressing that they use on their Oriental Chicken salad.  It is my favorite and we just had to catch the right manager to sell it to us.  Small things like that are so exciting to us.

 

We got to sit on the beach a little yesterday - it was much cooler there and we got to read  a bit.  Except it is a dangerous place, because of inconsiderate people.     A lady's umbrella blew out of the sand and flew to where we were sitting.  The point from the pole [that goes in the sand]  was aimed at us first.  Three ladies were sitting on the sand in front of me [they came from Margate to talk].  The point was one inch away from Phyllis' back.  I did not see it coming nor did she.  Judy shrieked [I thought it was a bug she saw]. And then there was a man [out of nowhere] that grabbed the pole.  He was walking with my old orthodontist! Coinky ding.  Phyllis could have lost a kidney or worse. Hate to think what would have happened if she wasn't sitting there. The point would have been in me.

 

6-27-03

This week's local paper, the Current has the first Foundation fundraiser event listed under the 14 day column so that should be a help.

 

We also got a big package in the mail today - a company that we asked months ago came through for us and donated the power bars so we have water and those, in the gift bags.

 

Alan got an email today from ANOTHER THYMIC CANCER patient. He is 54, in Texas , and I should send you his story.   Actually, Alan put his story on the website [ www.thymic.org ] so if you get a chance to read it, his name is Larry.

 

All I can say is whenever I see the 40,000 women marching in Philadelphia for breast cancer, I feel so alone.  It is mainly because I had never met a thymic cancer patient before. For a year and a half I have been saying how I'd like to 'talk' to one person with what I have, not thymoma, etc.

 

So we are emailing and it is wonderful to not be totally alone.  But remember, mine is more rare than his since mine was ECTOPIC.  And we're hoping our stories will help the next patient. 

 

6-28-03

Today I took THREE walks.  This morning we went to the bank and C.V.S. Then later this afternoon we walked to the beach and sat and read awhile.  And tonight we were -drum roll, please-invited to friends so we walked over there.  As usual  we brought dessert.  She had nothing out to  serve. Lucky for all,  I made Blondies [like brownies but chocolate chip dough sort of].

 

6-30-03

We are just dealing minute by minute with the enormity of what the oncologistS told us - that is they are sure the cancer will be coming back. It is highly aggressive and fast growing they said.  I want to prove them wrong.  But it may be beyond my control. I get my next scan in a few weeks and that will be MAJOR.  Already I am getting nervous ---that we pray no new masses surface. It is very difficult living this way...the bleakness of it all gets to us.  They say there is no chemo for this; of course there isn't!  There are no trials or tests because me and one or 2 others are it for this country. 

 

Try to take comfort in that you have time to change whatever does not make you happy and then DO IT.  It has to be a gift from God not to know when your time here is over. Then you have hope.

 

What used to seem important is so meaningless now - life takes on a new perspective.  Compared to health, there are no problems.  People ask, for ex., how is the weather at the shore.  What weather?  It wouldn't matter ...rain, snow, if it were a beach day or not.   We may be tilting at windmills but we still need to do research and find that one person somewhere who may have an answer for us.

 

We are in all day anyway tackling the timetable we have for the next  weeks.  We were outside Friday for a half hour, only as far as the portable phone would allow and couldn't leave the house, waiting for calls from drs. People don't understand how little importance weather is to someone in my mental state right now since much of what I have to do each day is inside and determining my very existence.  I appreciate going out for a nice walk but don't get upset if I can't because it is nasty .

 

Anyway today was my visit at Dr. Check's gynecologist.  He is also an endocrinologist and very famous for In Vitro Fertilization [which I DO NOT need].    He is so much more. Since March he has been doing research for us on Thymic cancer and said that he'd like to get some of my tissue sample and send it to a friend of his at Sloan Kettering.  IF I have a certain marker, then he'd like to try a drug, that is used for something else entirely,  on my cells. Supposedly, if all can be arranged, the drug would stop the tumor from growing by inhibiting  one of the key proteins it uses. He gave us 6 articles to read on it.  It is just amazing that he took the time to think this out, make calls, and do research.  In 3 weeks we call him and by then he will have met with the dr. at Sloan.   If the drug is not available in the US , then we'd go to Europe for it.  When we left we told him we didn't have any words to say - it is hard to find the proper emotion that goes beyond appreciate and thanks - just when he gave us some rays of hope. What a guy, huh?  He said he has another idea too, if the other doesn't pan out.   Has to do with an IMclone drug.

 

  7-1-03

This is rare - Dr. Check spent 3 hours with us.  He really would like to try to find something or someone to help me and you can actually look in his eyes and see the 'wheels' moving in his brain.  He made a lot of calls and had research articles faxed over while we were sitting there. He has 2 ideas in mind.   It made us have a little hope when we left there.  Whether anything will come to fruition or not, at least we know we are leaving no stone unturned.

 

That bitch Ann walked over to us while we were reading on the beach.  She started to ask how we were so I said I have an interesting question.  "When were you going to tell me you weren't coming over?" After all, she never called to cancel breakfast - I called to see where she was.  She said she thought I wasn't still having her because it was raining.  How was she brought up?

 

I told her we didn't need fair weather friends.  She started saying all the stress she has ---all about her.  Her cold, her husband's business, etc.  I was livid since these are all things that can be fixed or go away. How dare her compare what the oncologists told me to her nothings.  Then she had the nerve to say she was a good friend to me.  I told her my father always taught me that 'self praise stinks."  I told her to leave; she was on my last nerve.  She said she did so much for me.  I said like  you were to 'give me hope and then you quickly took it away." She was the one who was to get me a name at Johns Hopkins from her daughter-in-law and the kid was too busy, and the kid forgot, etc.

 

 Do you know how to meditate?  We are just learning.  It does help.  We really needed something this time around.  It is a major commitment and most of the time it helps though it does take a lifetime to master it, I am sure. 

 

 The Nancy L's of the world just are part of the life's journey; it probably is supposed to teach us something.  We have learned in the last year who can help us emotionally and who are too self-involved that we need to stay away from them for our own well- being.  It is never easy to take someone off our 'ladder' of support.  

 

But then there are beautiful surprises about who you put on the ladder.  It is a wide spectrum.  So we have Nancy L.  at one end and then there's GINA at the other.  

 

This week, I have been too hoarse to talk much; it is so frustrating.  I keep thinking it should be getting better but then the last few days it hurts to talk and it feels like someone has their hands very tightly around my neck. And I am a little worried since food is not going down smoothly all the time.

 

7-2-03

Also, all of my friends got treatment and all are doing fine; for 2 women, it is  10 years and they just had a recurrence. It is not a scientific survey, by any means,  but I was hoping for a few more years after the initial assault before we had to face it again.  I don't know who said it but the quote is, "Ours is not to reason why, ours is just to do and die."   So I took this Spring's news and did what the drs. said to do. 

 

 We are trying to put August from our mind and enjoy the summer as much as possible.   Thank you so much for writing back and especially saying we could send questions or comments.  At times, we have never felt so lost in our lives as now, so we appreciate finding people that can help guide us through the nightmare summer.  Learning to  meditate [and use the other methods available] will be crucial now.   

 

Here is info on our first fundraiser - for next week.  If you or anyone you know can come, we'd love you to be there.

 

The Foundation for Thymic Cancer Research will hold an Aerobic-Thon on Saturday July 12 at the Somers Point Fitness Center , at New and Mays Landing Roads, Somers Point, starting at 9 AM . Professional trainers will conduct sessions in kickboxing, aerobics, Pilates, body sculpting, step, and cardio dance. Each participant will get a gift-bag containing a t-shirt and other items, and there will be prizes and other give-aways.

The Foundation for Thymic Cancer Research  is a tax-exempt 501(c)(3) organization dedicated to helping patients with thymic-related cancers.  Thymic related cancers are a relatively rare, but aggressive, form of cancer affecting both children and adults. These cancers include thymic carcinomas, malignant thymomas, invasive thymomas, and thymic epithelial tumors.  While great strides are being made in other areas of cancer research and treatment, thymic-related cancers have a generally poor prognosis yet are often ignored by medical researchers.

Registration is $15 before the event, $20 at the door. Participants can register online at www.thymic.org.

The goals of the Foundation include:

The visit to the surgeon  was long but a friend or two stopped by to keep us company.  Much waiting.  When we finally saw him he said he couldn't believe how soon I was able to leave the hospital.  We learned how extensive the operation was.  We had no idea that the 4-6 inch scar is only the tip of the iceberg.

 

Once inside, they needed to cut about 24 inches around, from front to back.  Now that explains the majority of my pains.  From my right side, to my center back is about 12 inches and then from my right side along the front [parallel to my breast], they had to cut another 12 inches. He wants me to take it easy a few more weeks and see him in 3 months, after getting a CAT scan.  They think it is  healing properly, so that is good.

 

His office is practically all lung cancer patients and it makes one think.  Many are end-stage.  In wheelchairs and on oxygen and very thin, bald.  I did not like being around so many sick people during our time there.  It was very depressing to see this.   

 

The pains in my right back and side and breast have not abated and on top of that my neck incision
site from last year has not eased up [a real killer].  Very stiff and hard to turn. 

 

Usually  I change my clothes 3 times to find something that didn't hurt the sites .   I sat at my sewing machine and cut, for example, the sweatshirt necks down into a 'V' and hemmed them.  It makes them wearable now.  I did this with some nightshirt tops too.  I was proud of myself that I thought to do this.  They are perfectly good items but killed me at the spot of the neck incision and radiation. And now they have to be soft inside because they abrase the new scar [which they don't want covered].   Thinking of becoming a nudist.

 

Reiki is hard to explain - can't figure out how it works.   They use meridians and chakras...but lots of it is based on stuff they can't test right now because they don't know how. When they do...I am sure they will find that the interaction between the therapist and the patient is part of the deal. Reiki  is 1000's of years old and the basis, from what I am learning is the person transmit energy they get from God into your body, for healing and relaxing from stress. Sometimes their hands touch you - other times they are over you.  There is a lot of visualization they guide you through.  If you  look it up on the internet maybe you can understand it better than I can explain.

 

Those happy pictures you paint are part of the Reiki.  They told me to picture smiley faces in ALL my cells.  It was a relief to feel somewhat better, all of a sudden.  Even my mood was brightened.  My situation hasn't changed but it is being tolerated now. She opened up my major chakras et voila!

 

7-3-03

Thank you for being concerned about what I read. That was so sweet; from what little you have written, we know all your emails will be fine.  99% of the people we know are so compassionate.  It is that other percent that we call the 'stupids.'  Right before my surgery last year, after much research and appointments with dozens of drs.,  one lady said to  me, "If you haven't been to Sloan Kettering yet, run, don't walk to there." 

 

You are so right about having all the medical talent behind us.  The internet has opened up the world of drs. to us and we feel as if we have done everything possible to get whatever answers may be out there.

 

What you said about the march was very astute.  And actually, my 25 year old nephew said something profound too.  He said that it is a good thing that they do this because whatever research they do for one type of cancer most likely will benefit patients of other types of cancer.

 

We think alike.  It is ironic what you tell your friends about not getting this; I say the same - I tell people if one person per year per continent gets this, then they are safe this year because I  filled the slot! 

 

How you described your vacations at the hospital is so similar to what we have felt.  The first surgery was where Alan and I went to college [Temple Univ.].  I spent 2 years at the medical school studying clinical laboratory sciences and working at Skin and Cancer there. SO it was odd being back as a patient.  The residents had to write a journal article about me; I am still in touch with them from time to time.

 

My recent surgery was at Univ. Of Pennsylvania [where Alan got his Master's degree from Wharton]. We don't live in Philadelphia anymore - we moved to the Jersey shore 4 years ago; a dream we had for decades.  So when we went up for my lung operation, we said we were taking separate vacations again.  Alan in the hotel and me in the hospital. 

 

Like you,  I plan to give death a good kick in the ass and give each of those wayward cells the death penalty.  They deserve it for what they have done to us.  My one 'cheerleader' calls them stupid criminals, like you see on Jay Leno.  He always reads those newspaper bits on criminals that - for example - leave their wallet behind.  Well, these cancer cells have no idea what they are up against.  Our medical teams are going to kill them and give us back our lives.  We may have cancer but it doesn't have us!  I went back to my kickboxing class last night...just to prove that point.

 

7-4-03

Just wondering how rustic the family camp is if you say it is too rustic.  When I was a little girl, my parents took my sister and I to the Adirondacks for a vacation and the cabin we stayed in must have been sub-army regulation. 

 

We are not campers; ever since Alan was in the army and had basic training, he says camping is not for him.  I like staying in chateaux [that's more like my speed].