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I am still getting rid of things that are stored in Paul’s garage and getting rid of accumulated stuff (we will have a yard sale one of these fine days). I want to begin work on my photo scrapbook albums soon. I have a table in my room and all my supplies ready to use.

It is good to feel more like myself. The chemo, even though only 4 weeks, really took a toll and I have a hard time remembering things that happened during that time. Blood tests verified that the chemo was not having a significant effect on the cancer so my decision to stop is good and I can have better quality of time left. I spent Tuesday to Friday last week in Cayucos visiting my mom and dad. Laura and Joe drove me up and we all had such a good time. I know I was not a bother in the car because I slept most of the time!! Mary Jo and her two kids, Joey and Lisa, drove to Monterey to meet us last Wednesday and we all enjoyed the Monterey Bay Aquarium. I had not been there in about 18 years or so. It was a treat to the eyes; all the fish displays, jellyfish displays, kelp garden, etc… Got to see the otters get fed (my favorite sea critter). The whole complex was beautiful; the displays, the colors of the walls. Saw a short film on the Monterey Bay Canyon , which I did not even know existed (unfortunately there was no narration so I still don’t know much) but it is deeper than the Grand Canyon and right there under water of the Monterey coast by the bay.

Jennifer was here from NYC for a month and I got to spend daily time with her. All the kids helped with the move out of my apartment and in to Paul’s. My sister Debbie stayed with me for a week and helped too. She made what seemed to me like an overwhelming task, doable, little by little, and we even fit something fun in everyday, like going to a movie. The kids and a couple of friends helped with the actual move by truck and it went without any problems at all.

I have a Hospice doctor that is awesome. I am sort of status quo right now; my job is to manage my pain and for now I just have to take my meds, judge when I need more and of course take my naps!. No dietary restrictions! Yea! I can’t drive anymore because of the meds but it has not been too bad. A little freedom lost but many wonderful hands are here to help me out. A nurse visits me once a week to check me out and discuss any medication issues etc. I cannot sing enough praises to Hospice. What an incredible organization.

That’s it for now. Thank you again for the countless kind things that have been done for me these past months.

Mom/Miriam

Hi everyone. It’s been a while but highlights are as follows (Thought since I was up at 2AM for meds I might as well say hello and fill you in….. Hope this not too repetitive. I forget where I left off…

April, May and June have been doctor visits and tests and gathering information. I had a lung biopsy eight weeks ago which confirmed numerous cancer lesions in my lungs and a diagnosis of adenocarcinoma (a similar cancer that my brother Mike died of at age 48 in 1997). It seems to baffle everyone that I am not a smoker. My one night stay turned into a three night ordeal. I did not recover quit as quickly as I thought I would, My sister Debbie stayed with me Tuesday through Sunday so between my kids and Deb, I was well taken care of.

After my biopsy post-op visit I was turned over to oncology and had my first appointment June 3rd with Dr. Rau. Christine (my oldest daughter) and I spent almost an hour with him and I was very impressed with his calm manner, his directness and his thoroughness. He even drew pictures to explain organs etc ….

The information he had at that point was not sufficient for him to start me on chemo because there are many kinds of chemo directed at different organs and cancers. I do not have an obvious tumor mass to indicate a probable “source” and the biopsy was not conclusive regarding source so he ordered three more procedures; a colonoscopy, EGD and a kidney scan. Most of my major discomfort is in my entire belly. A very pressured/swollen feeling; kind of like 11 months pregnant!! Dr. Rau called it hydro nephrosis. Dr. Rau also was present at a tumor board a several weeks ago where they all discussed my case and agreed on next steps.

I had bloodwork again to see if there are elevated “tumor markers”. Evidently there are indications in blood when one has cancer, that are associated with certain cancers and if these show up it further indicates a source. The results were a very high probability of pancreatic cancer. Not such good news because the response to treatment of pancreatic cancer are in the 25-30%. It is a quiet cancer that is Stage IV before there are any real alarms.

All of these results add to the information that we already have and which had determined my course of treatment to maybe slow the progression; there is no “cure” but the hope is that chemo will be effective in slowing the growth. (My first round of chemo was two and a half weeks ago. Lovely experience.) No hair loss yet =)

I am finally feeling like a human being but still on major pain meds. I can speak a sentence without running out of breath and taking slow walks, and I need lots of naps; moving slower these days. But I am certainly much better every day. For now I am staying in my own little place but eventually, when it is either medically or financially impractical, I will move in with my son Paul. I am in a good frame of mind; a little surprised at my relative calm but there is really no other choice. I am very thankful for my strong faith in God. My last day of work was April 19th and I am on disability now. It's a shame because I had such a great job ... only 2 miles from home too! They have been very good to me. I also had an awesome year in Tahoe that I am very grateful for. Loved living in changing seasons; even loved the snow (most of the time).

Life goes on and I went to a wedding shower for a friend’s daughter yesterday. Was fun and the first real outing I have had since surgery other than a movie so it felt good to be normal. We celebrated my Erin’s 23rd birthday last week and family get togethers are always fun.

I have qualified to be on the Hospice Program, even at this relatively early stage, and they are awesome. A home health nurse comes house to draw the pre-chemo blood work befor each procedure. AND all my meds from now on are “free” (no co-pays)!! Of course considering my Cobra premium to keep Kaiser is $501.00 a month !!! There was not even the normal $50 ER room visit fee this morning. Oh, yeah, I forgot to mention that. All is well now. My medications were all out of whack

One was a gift from a friend of $1,500 raised at a garage sale she organized and had in my honor for medical bills etc.

The other was going to Vegas with my sister Laura. We had such a fun time, naps and all. I even won a little jackpot at Whiskey Pete’s!!!

And yet a third highlight!!! My Jennifer is home for the entire month of July!!! She brought a little of NYC with her and we are having such fun just “hangin around”.

So. Round two of chemo Monday and Tuesday. Send prayers, love, and positive energy!!

"First Chemo"

Hi all, Just a quick note to say that it went very well with my first chemo; I have another tomorrow then wait two weeks 'til the next round. It was quite an experience to actually see and participate in something that so many people have been through and continue to go through. I was chair 12

All things considered the environment is very quiet and peaceful. They give you headphones to listen to music or watch personal TVs (one at each recliner chair). I thought of all the love and prayers and kindnesses that are being sent my way and taking it a day at a time.

Hi everybody! I'm leaving tomorrow to visit my parents for a few days and celebrate Father's Day! I return Monday, have Chemo Orientation on Tuesday and start chemo Wednesday (4 hours) and Thursday (3 hours), and continue the two days of chemo every two weeks for about two months. Then I will be evaluated to see if there is any reduction in the size of the cancer lesions. So, here we go............ I get such strength from my kids and family and friends and I am sure it will help me through this treatment. Not sure how much communication I will be doing but email is the best for now. Heartfelt thanks for every thought, prayer and all the other countless ways you have shown love and support and kindness.

Hi everyone. This is a follow up to my phone calls to my kids and my family and an update to friends. We finally know something.

Dr. Rau, my oncologist, called me about 1:15 this afternoon with his analysis of all the tests etc. His educated diagnosis is cancer of the pancreas. Not the best case scenario but at least we know. I do not have cancer of the colon, intestine, stomach, breast, esophagus; all have been ruled out. I do, however, have extremely elevated proteins "tumor markers" in my blood tests that are consistent with pancreatic cancer. And the area around the pancreas is enflamed with fluid.

So he explained several options, one of which is a biopsy of the pancreas. Unless I really want to go through that, he suggests I not have it because his course of treatment is going to be the same whether I have it or not and he feels it would be an additional trauma that I do not need. He wants to start me on the traditional chemo for pancreatic cancer with a new drug added that has shown slightly higher success rates that traditional alone. If there is no significant improvement after several rounds of this chemo, he will add a third oral drug that is being used in some clinical trials. My chemo will start in a couple of weeks and treatments are every two weeks. He says I can expect thinning of hair, fatigue, nausea (the usual chemo side effects). Each treatment takes 2-3 hours.

I am doing fine. Just trying to get used to it all and since I do not really know how chemo will effect me it's a little scary. The nausea thing I could totally do without. I hope there are meds that can keep that in check. I have seen lots of people, young and old, that are in chemo during my visits to the doctor lately and I know I am one of many; and if they can tolerate it, I guess I can too. And I KNOW none of them has family and friends as loving, caring and supportive as I do.

'Mornin Everybody.... Quick update because I know you want to know what's up .......... It is Tuesday 6/7 today and I will have a kidney scan this morning. That one is easy. Then I have been scheduled for the colonoscopy and EGD at 9AM Thursday 6/8. Very much looking forward to being "out" for those. :) Only clear liquids for the next 48 hours!!!!!!! So I will be dining on popsicles and jello and water (with lemon!).
I am going to stay at Paul's place Thursday night and maybe the weekend - I hear it is going to be HOT and he has air conditioning! But I will have my cell 714-342-0163 and also be checking my messages.

Barring any medical reason to stay home I plan on taking the train up to Cayucos to spend Father's Day with Dad and Mom and spend a few days there. Love seeing the ocean - very calming.

Dr. Rau (Internal Medicine/Hematology and Oncology - is also a co-investigator and active participant in numerous cancer clinical trials)

This morning at 10AM I had my first oncology appointment with Dr. Rau. Christine and I spent almost an hour with him and I was very impressed with his calm manner, his directness and his thoroughness. He even drew pictures to explain organs etc …. The information Dr. Rau has, as of now, is not sufficient for him to start me on chemo because there are many kinds of chemo directed at different organs and cancers. I do not have an obvious tumor mass to indicate a probable “source” and the biopsy was not conclusive regarding source so:
1) Very soon I will have a colonoscopy and EGD (the scope down the throat to view the esophagus and stomach) before any more decisions are made regarding chemo. I will be asleep for both procedures. I think out-patient….He put in urgent requests for these and Kaiser will call me with the dates.
2) I had bloodwork again today to see if there are elevated “tumor markers”. Dr. Rau says there are indications in blood when one has cancer that they have learned are associated with certain cancers and if these show up it further indicates a source.
3) I also will have the kidney scan on 6/7/05 and this will go to the urologist. Actually this is where most of my discomfort is; on my right side under my ribs and down. A very bloated/swollen feeling. Dr. Rau called it hydro nephrosis. We want to see if the urine is flowing unblocked through the kidney and ureter.
4) Dr. Rau would like for me to have any x-rays or scan records from the past 20 years sent to him. That is my job for now.

The could-be sources range from thyroid to stomach to kidney to colon to intestine etc….The least treatable would be pancreas or liver involvement. I do have 3 small cysts on both of those organs but they are too small to indicate cancer for sure. The other organs do usually respond to treatment.

All of this will add to the information that we already have and will enable Dr. Rau to make the best decision about treatment to slow the progression; there is no “cure”. He thinks the progress of my cancer is “low grade” as far as an immediate time crunch factor but he also acknowledges I have had this for quite a while.

He was present at the tumor board yesterday where they all discussed my case and agreed on next steps. He also thinks is it a little premature to talk about hospice. I will take that as relative good news.

All in all it was very informative and all the waiting makes perfect sense. I am in good hands so I will just be patient and see what the next procedures reveal.

My love to you all and thank you so much for your prayers and good thoughts and all the countless ways you are supporting me during this illness.

1. Morning appointment with Amy (therapist)
Results: I am doing incredibly well and my outlook and plans (or lack thereof) are well thought out and I am moving forward the best I can, especially considering there are still lots of unknowns. We just discussed my plans and priorities. We did not set a further appointment until I get into some kind of medical treatment.

2. Appointment with surgeon; pre op for Tuesday's chest scope and lung biopsy. Christine and Paul were with me.
Results: The PET scan I had last Monday showed areas of positive malignancy in the lesions on my lungs. It did NOT show positive for pancreas or kidney (that is good news). He went over what is going to happen and said that the biopsy will give some immediate information regarding the cancer but the pathology tests they do to "source" the cancer will take a few days. It is highly unlikely that any other procedure involving the kidney will be done at the same time as the biopsy because I will be on my right side for the left lung biopsies and chest cavity scope. Then I had bloodwork and a urine sample. No blood in the urine - another good sign.

3. Appointment with Urologist. Erin met me there. (and I got to go see her and her cat Piglet's new apartment afterwards - very nice and cozy)
Results: Dr. Chuong cannot be certain whether the enlarged ureter tube has a blockage or if is normal for me. Some people are born with an enlarged ureter. So he has asked my surgeon to order what is called a nuclear scan of the kidney, ureter, bladder before I go home from the hospital. If there is a blockage he will schedule surgery for a stent (hmmm, where have I heard that word before, Dad???!!!) to be inserted.

So I wait until Tuesday. The surgery time is undecided and they will call me Monday evening. Debbie is coming for a short visit this weekend (and a movie!!).

Thanks so much for all the many ways you are all showing your support of me during this ordeal.
More again soon ..........

Hi Everybody... My primary care physician, Dr. Doshi (an Internist), called me with the results of the May 4th CAT scan, which was an attempt to more clearly identify major organs affected. The right kidney is enlarged and so is the ureter (the tube that goes from the kidney to the bladder). It is double its normal size. The radiologist suggested an IVP dye scan which would show any blockage in the flow of fluid from the kidney to the bladder, and wanted to refer me to a Urologist.

Dr. Doshi says enough with the CAT scans (three so far) and referrals and is attempting, as I type this, to schedule me for a stent surgery to be performed simultaneously with the lung biopsy that I am having next Tuesday (since I will be under anesthesia anyhow). The stent would alleviate the blockage in the kidney/ureter that is causing my abdominal cramping pain. I have my pre-op office visit this Thursday. As it stands now, I will be overnight Tuesday. I am waiting for her to call me back with what has been discussed with other doctors and decided. I very well may need to have the IVP dye scan anyhow but maybe they will rush it.

My Mother's Day was absolutely wonderful. Lubin flew Jennifer and Jerome here from NYC (he is here from the UK visiting Jennifer for two weeks. So all my gang was there (except Joe in Okinawa) and we had a really fun time at the Gills. Friday night Texas hold'em was at Paul's!!!

You all know my dear friends Roy & John (their 25th anniversary together is today!!). Well, John experienced a mild stroke and was hospitalized over the weekend for observation and MRIs. He has lost left peripheral vision in both eyes. But he is home now and trying to relax and hoping to regain his vision so he can drive. Work has been extremely stressful lately and he battles high blood pressure too. So keep him in your prayers. Was his worst fear and quite a shock. I went with Jennifer and Jerome to visit him in the hospital and said "what's wrong with this picture?" :) We surely expected him to be visiting me.

I am going to make some major decisions about things like where to live after the surgery and biopsy next Tuesday which will hopefully clarify my condition and lead to a game plan for treatment. My disability application is in and I am waiting to see what income that will provide. I am tired most of the time but not in pain as long as I take my lovely meds. And my spirits are up and hopeful. Thank you all for you love and continued support and prayers.

PS:
Normally I would keep this personal and close to my heart but I want to share this incredibly beautiful poem that Jennifer wrote for me for Mother's Day. (Hope you don't mind, Jen.)

Mom
I want to give you a poem,
Something I wrote for this special time,
I hope you read it carefully,
As I wrote it with just you in mind...

I feel tremendous pride and joy when I think of you Mom,
When I think of all you've been through and risen above.
I draw strength that fills me with light and with love
I know I'm a lucky girl.

When I walk through Central Park in Spring,
I'm always looking around at everything,
The trees, and the sky, and the little flowers there,
And you are in them all, you are everywhere.

The simple pleasures that life affords,
Hardly ever miss me anymore,
I take them in of my own accord,
I've learned how to embrace them, from you.

Your cute giggle is the fastest cure,
To any melancholy I might have been feeling before,
You lift my spirits without giving me a choice,
Cause I can hear how you love me..an unmistakable tone of voice.

I've never felt the 3000 miles between you and me,
Because distance is where the heart is,
And not in the space between.
You are with me in who I am, with me in everything.

I had my third CAT scan Wednesday and went just fine - neck to groin scan and I will have results Monday or Tuesday. Yesterday I had my appointment with Dr. Marrujo, the thoracic surgeon. I liked him very much and Paul and Christine were with me. The fluid that was taken from my lung last week was not conclusive because, in his words, "it has been there for quite awhile" and was enclosed in a sac that it created around itself; similar to an orange rind/peel. It would require surgery to open the lung up again for air.
So it that "old" fluid had no new cells etc. I am scheduled for a lung biopsy on May 17th and will be overnight at the hospital. They put me out for it. As was explained to me, they will make three small incisions in my upper right side, one with a camera and the other two for the procedure. He wants to see my chest cavity, check for any unknown infection etc. This doctor believed my pancreas is fine. The lung and right kidney and possibly colon are best guesses but only guesses. The biopsy will be 100% accurate as to what type of cancer and I will be turned over to oncology at that time. He says they will have the results before I even come out of the anesthesia.

I am having the PET scan on Monday the 9th. It is about a 45 minute prep with dye going into me and then the scan is about 45 minutes. This is supposed to indicate where in the body any cancer or hyperactive cells are.

So we are progressing little by little. I met Kim's husband Dr. Ben Spurgeon and he was very gracious and has called Paul once or twice clarifying things. Jennifer and Jerome arrive tomorrow morning and I am very excited to see them. Grandparents day at Nathan's baseball game tomorrow so I will probably go to that at 3. Peggy and Jim
are going to Clayton's game in the morning. The boys LOVED the quarters you sent mom, and all loved their birthday gifts. Everyone ended up singing the yodel song from the puppet scene in Sound of Music. It was really very funny.

So, concrete decisions about work and where to live etc will be made after
my May 17th procedure. For the foreseeable future, I cannot work. Paperwork for disability is submitted so I have done all I can do for now. I will keep you all informed.

4/28/2005 (I think) It's Thursday..... I just received a call from the lung doctor with the results of the pleural tap. He was certain that this would provide an answer to what kind of cancer I have. But his words to me were all the routine tests for fungus, infection etc were negative. There are, however clusters of abnormal cells (atypical clusters of cells) that he cannot for sure say are cancer and I need to see a Thoracic Surgeon and have lung biopsy of the problem area (lower right lung). So that is next.

Ironically, Paul's dear friend Kim, is married to a friend of Paul and Jason's (he even played soccer with Jason) and he is a well respected Neurologist at Kaiser. Same facility that I go to. And his dad is another well respected Neurologist there and head of staff or something like that. Anyhow they are going to step in and choose the Thoracic Surgeon and shadow my care. Is that the hand of God or what!? Paul and I are going to go up and see him the next time we are over there for an appointment or procedure.

I just got back from watching Nathan get a special student award along with several others at his school. It was a 1st and 2nd grade "event" so Clayton was there too, It happened to be pajama/bad hair day. What a riot seeing all these little guys with their hair a wreck and all the varied PJs. Very cute. And one of the male teachers had a robe over a nightshirt and tied his beard with two little rubber bands like pigtails.

On another note,,,,,,,,,, Jason was supposed to have a second mediation hearing today regarding Annette contesting his sole custody of the girls. She did not show again. But she called Jason and said she is dropping the whole thing and is sorry for all that she has put him through. She is going to plead guilty to the charges against her and probably serve a year in jail. So that is good news for Jason and a big fight he does not have to go through anymore. My wish is that when she gets out she is able to be the mom Mariah and Kaylee need.

So now I am going to do laundry. That seems like such a simple fun thing right about now! :) Then a nap. I love my naps!!