Latest Update

We have relocated to the Philadelphia area where my husband is from. He is seeking cancer treatment here.....Things are tough and I do not know how I can financially continue to distribute these to cancer patients in this area. I believe that God will show me a way......The hospitals here are so kind and do donate the bottles. The patients love them and these little angels hold their prayers and give them hope. With that comes FAITH........More pics to come soon. My hubby joe was recently hospitalized in Intensive care. They found a blood clot in his brain and some bleeding. We are undergoing ct scans, etc. andmeeting witth neurosurgeons next week to decide what to do. This is a VERY dangerous situation....with the bleeding AND the clot AND the cancer treatment.....But our Faith is strong and God will provide. More pics promised soon. Diane

January 21, 2009

Joe is having some problems with the ongoing chemo. The Gemzar he had on Monday gave him a violent reaction (shaking, chills, fever of 103). I called the dr. and he said to give him Motrin for the fever (it worked). At the drs. visit on Monday, Joe told our new Dr. he had been having severe headaches. He is scheduled for an MRI (or ultrasound) of the brain today. I am praying this is not a return of the bloodclot that was in the brain last year before the cancer was diagnosed. We did find a family dr up here. The dr. gave Joe remarin and for 2 weeks after he started taking it, he was energized beyond belief. On the go visiting family, etc. I was amazed at the turnaround. Joe decided to cut the dosage to 1/2 (which the dr advised) and he has sort of settled back into his old ways now. He didn't get out of bed at all yesterday. Today he has a tremendous headache. We go to the mri center at 3 today. I'll keep you posted. He has maintained his weight. Actually, he has gained some weight. A strange thing though is that his ankles are swollen like grapefruits and have little white dots all over them. The dr. did not seem too concerned and told him to keep his feet elevated and to also try to walk more (contradiction? here). He is quite moody and easily depressed and angry. I'm doing the best I can but I don't like being up here in Philadelphia area with all the cold and snow and wish we had stayed in Florida.
As i have posted before, I lost my job, we lost our home to foreclosure and had to file chapter 7 bankruptcy. Joe cannot travel from here (PA) to FL for the bankruptcy hearing next month. I detest flying but we are filing a Power of Attorney with the court and I will fly down and attend the hearing in his behalf. I applied for Medicaid because i have no health insurance but haven't heard yet if I get it. I also applied for food stamps.
I got another Advanced credential in Trial Practice but still no job. The economy stinks and I have never had anything in my life with this much destruction all at once. I really think Joe should have stayed in Florida where it is warm and he could get outdoors. It is so cold here....we haven't even made it to church in 3 weeks.
will keep you posted on the results of the MRI.

Constant Stomache Pain

Joe constantly complains of stomache pain. He takes Dilaudid (spelling) and another pain med for pain control. He tells me he is sick but he can't describe how...I feel so helpless. I am kind of glad I am not working but I need to find a way to make some money. I just can't be everywhere and everything at the same time. I just don't want to be away from Joe. He is very clingy to me now. He wants me with him all the time and holds me more than ever before. That is good...but not the price it is costing.

CA19-9 Results

I should add here the following results of the CA19-9 tests:
April: over 40,000
June: down to 28000
October: down to 4,000
November (at the new cancer center in Philly) 8,000

why is it going up? The cancer dr. told us not to worry about it. He also did a new CT and it didn't show a "solid" mass at this time. There was concern about the liver but the liver has a cyst. I have to readup on cysts and tumors.....I don't know the differences and the roles they play in cancer.
We do another CA19-9 test in a month

Finding a New Family Doctor

Just by word of mouth, we found a new family doctor to go to in this new area. We met with him last week and he told Joe most Pancreatic cancer patients only get 3-6 months to live. I was devastated with him telling Joe this. What in the hell has happend to giving patients hope. In other words, Joe left feeling like he is living on "borrowed time" and in fact has been in bed feeling "sick" ever since that visit. I'd like to kick that dr where the sun don't shine.!
Joe liked the dr though and franklyd oesn't want to spend a bunch of time trying to find another doctor.
I have lots of release papers to get records from Florida sentup to this new family dr.

Abington-Philly - starting more chemo

We met with the Dr. at Rosenfeld and went through 3 rounds of chemo 1x/week and on the 3rd visit when they took his blood count it showed a very low white blood count. I didn't understand why they gave him chemo with a low WBC. In Florida when the WBC was low, he would get a shot and no chemo until the WBC went up to a good range. I questionned this with the nurse and she asked me if I wanted her to ask the dr about it..Joe of course didn't want to make waves but I wanted an answer so I asked her to talk to the dr.
She came back and said for Joe to come back the next day and get a shot to boost up the white blood count. Is it me? or why did they do this in the first place?
By the way. I've sent out probably 100 resumes....no work and no unemployment even though I am appealing the decision on the unemployment.

Chemobrain? again

When we talked to our bankruptcy attorney we knew we were going to lose the house.. Couldn't afford it and the economy was so bad that our house was worth way less than we owed on it. And now with me not working...that kind of cinched it. We moved into an apartment. We were in the apartment for about a month when Joe decided to move to Pennsylania to be with his family. I didn't want to go! I didn't think I could get a job there but when Joe said maybe a trial separation then (but no divorce...we are Catholic)....mom and I packed up and the kids loaded up a u-haul and we moved to the Philadelphia area. His daughter is an RN in the critical care unit at Abington Hospital so we found the Rosenfeld Cancer Center right away and made arrangements to get treatment there. One more rash quick decision.....and I am in a place I would never be except I would go anywhere with him.

More Chemo

After the initial 7 weeks of chemo he got a week off. Then 3 weeks on....one off....then another 3 weeks on and one off. During this time I found another job with a law firm...Same thing happened....I was too emotionally distraught to be of any use and the female attorneys (at least one of them) was too much for me....it was hard enough dealing with the stress of Joe's illness and having to also care for my 84 year old mother that lived with us and this attorney just kept putting me down...i didn't do anything right in her eyes or at least that is the way I perceived things from her. One day she just rolled her eyes once too much and i quit. They got me good on this one..my unemployment was denied so we ended up losing our home and filing for bankruptcy. What on earth can happen next......Read on....there's more to follow.

7 weeks of chemo

Following the cyberknife we met with our oncologist in Altamonte Springs. Joe was given gemzar for chemo once per week (about a 3-4 hour drip) for 7 weeks straight. I've heard that the CA19-9 is a test that measures the cancer in your body. The normal test is 37 (not 37000...just plain old 37) and Joe's measured over 40,000 in April of 2008.
Joe did not get sick from these rounds of chemo. he was lucky in that regard. He made himself eat and made himself stay busy. On my part....I wasn't so lucky. As a caregiver I gave my all to Joe. I was employed as a paralegal but got fired from the law firm for missing too much work and I guess being too emotionally distraught at the office. No one can possibly understand what you go through with this until it happens to you. Guess I spoke out just once too much and they pretty much told me to get out.....which I did. The only good out of this was that I could drive Joe to the chemo sessions and the dr. visits. When you go through chemo...sometimes you get what they call "chemobrain". I can't explain it except that Joe was making hasty decisions on the spur of the moment without thinking them through. While I was still working, he decided to drive from Florida to Pennsylvania to see his family (he is from Philly) so he took off. We needed the money so I stayed behind and kept working. He planned to stay 3 weeks but after 3 days he called and said he was coming home. His son ended up driving him back to Florida because Joe was too ill to make the trip alone. This is about the time I got fired.

Cyberknife

We found out about an alternative to surgery for cancer. It is called Cyberknife. Cyberknife (CK) started in Stanford and has been used with an unpublished 80% success rate for brain cancer, etc. We were living in Florida in April and found a Cyberknife facility in Sanford, Florida. We went for evaluation with Dr. Holasek (a wonderful caring doctor with the most fabulous caring team) and Joe was accepted for treatment.
Following is a synopsis of how it works. First I drove him to Jacksonville, Florida to a facility to have 3 gold markers placed inside the cancer in the pancreas. The markers settled for a week and in the meantime, a special "bed" was made for Joe at the Sanford CK facility. After the week of settling....we went 3 days in a row where Joe laid in this special "bed" and this huge robotic type thing "zapped" him with heavy radiation for about 45 minutes. This is totally painless and Joe didn't feel any pain whatsoever from this treatment. This went on for 3 days in a row and then you are done.
Next you work with your oncologist......more on that to follow.