Al's Journey

There is no easy, or best way to start a narrative of a family member struggling with a deadly disease. I will offer a recent poem I wrote and go from there.

-Lou

A cancer poem:

Dancing in the Daffodils

Daily she used to come to check,
Awaiting the bloom of daffodils.
Near the old cattle watering drainpipe,
Cute blooms of bright yellow opened.
Individual sunspots on stalks, green,
Near the old cattle watering drainpipe,
Greet spring with their smile.

Individual sunspots on stalks, green,
Near the old cattle watering drainpipe,

Tell her to awaken and shake off winter.
Here a gentle breeze blows; new life,
Eternity. Can you smell Spring Sarah?

Daily she used to come to check,
Awaiting the bloom of daffodils.
Focus on the pretty flowers, not sadness.
Focus on the pretty flowers, not sadness.
Our Sarah is weakened by cancer and cures.
Daily she used to come to check:
Individual sunspots on stalks, green
Left in her hospital room,
Sway in the breeze as she remembers...

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24 April 2008

There is really no easy way to add to this entry, nor is there any way to prepare for cancer when it strikes so close to home. Here are the two most recent emails from my sister Bobbi:

Everyone,

I imagine that you know by now that Alfred is in the hospital. If not, here are the details: He has been sick for a while now. Apparently he was being treated for indigestion, but it got so bad on Wednesday that when he went to get health records in Ellsworth, he needed help out of the car. At the Ellsworth hospital they did blood tests and CT scan and stuff and told him that he had a blockage in his colon and they scheduled surgery for Thursday at 11. Mom said the surgeon called her and told her that he came through the surgery well, but that they found a growth in his small intestine. He is in the hospital in Ellsworth, Room 203. They are testing the growth for cancer. They will know around Tuesday. He had lost enough weight so that he is now 140lbs.

I just thought you might want to know.

Love,

Bobbi M. Martinez

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After a follow up visit on Tuesday, 22 April 2008, he received the news that he has lymphoma. I have not talked to anyone at the hospital that treated him about what kind he has, or a course of action. He has a follow up appointment on 2 May to discuss options. Right now I am a bit overwhelmed.

More details to follow.

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29 April 2008

From: Carol

To: Bobbi

Subject: RE: Fritz update

Date: Mon, 28 Apr 2008 14:08:28 -0400


All I can find on B-cell lymphoma is several leukemias. Is that what it looks like we are dealing with? I try not to diagnose, but that is a pretty scary one.

Carolyn Berryment
______________________________

Subject: Fritz update

Date: Mon, 28 Apr 2008 12:48:47 -0400

From: Bobbi

To: Carol

Hello everyone,

Here is the latest that I have heard:

Fritz had an appointment this morning in Ellsworth to have his 39 staples removed. All went well. He has gone from a low of 142 up to 150 in weight. Apparently he has been told to eat highly caloric food, but has no restrictions on type. He goes to the Cancer specialist in Bangor on Friday. He has been diagnosed with Type B Lymphoma, but there are about 14 Type-Bs, so I don't can't look up any specifics.

On another note, we are all well, and we hope you are too.

Regards,

Bobbi M. Martinez

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1 May 2008

I spoke with my brother Al on the phone this afternoon. It was a pretty quick conversation, because I was at work. He seemed in very good spirits, and willing to fight the fights required. I pray to God for divine intervention, and strength in this battle.

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2 May 2008

from: Jose and Bobbi Martinez

Hi all,

I have just come home from seeing Fritz during his visit to the Cancer doctor. They told him too much stuff for him to remember it all, but the jist of it was that the type of cancer he has is an aggressive-fast growing type.

They have scheduled him for a few more tests to see if they got all of it during the operation. Then, he is going to start chemotherapy after that. He is as small as Dad now, though he says he weighs 20 lbs or so more than when he went into the hospital for the operation.

The tests he is getting are a PET scan where they put a dye into him and then check to see if it shows up in various parts of his body. I think that it binds to the cancer cells, if there are any, and then they trace them. Also, he needs to have bone marrow tests, to see if it is in there, and another CT scan, I think.

I have heard from some other cancer survivors that I know, that the Doctor - Dr. Hartz, that he went to see, is very nice and very good.

He also got the coping and support group information, and the financial, bill paying assistance information while he was there.

He told me that he still has seven staples to be removed on Monday. They took out the tumor, his appendix, and part of his small and large intestines when they did the operation. Apparently the tumor was right around where the small and large intestines join each other.

That is all I know right now. If I hear more, I will pass it along. He seemed fairly strong and in good spirits when I saw him. His friend Blanche was with him, and she has been very supportive of him throughout this.

Love you all,

Bobbi

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21 May 2008

From: Jose and Bobbi Martinez

Hi all,

I went to sit with Fritz today when he had his appointment, and I tried to e-mail you with the details, but it kicked back and wouldn't send out. Well, I am trying again. I took copious notes and have detailed everything below. His weight has gone back up to around 175, though, he doesn't look it. He still looks skinny and small, though his belly is a little rounded now.

The cancer is Diffuse B-cell Large Cell Lymphoma. It is an aggressive, but not the most aggressive growing type of B-cell Lymphoma there is. Imagine a line that is broken up into quarters, with the first of the line being the slowest growing, least aggressive kind of Lymphoma, and the end of the line being the most aggressive fast growing kind of Lymphoma. Alfred's type is around the ¾ mark. So here is what the tests revealed:

May 9th CT scan:

Small Lymph glands in middle of chest enlarged (Dr. not sure if that meant they were cancerous)

Left lung has a less than 1cm spot on it. (See Pet Scan below)

Inflammation in sigmoid colon

PET Scan:

Bottom of chest or top of belly area showing indications (Area of Spleen)

The lump in the lung "lit" up (remember in PET scan the dye injected binds to cancerous cells and "lights" up under observation)

Bottom of belly area showing some indications of changes (Dr. said this could be due to post operative stuff going on)

Bone Marrow test; no indication of any cancerous cells in marrow; however, they found was that Fritz is severely anemic, which explains his weakness at present. Dr. Hartz said there was virtually no iron found in his bone marrow. Normal iron blood level is 14. Fritz is currently at 9. If he were to fall to 7, he would need a blood transfusion. Dr. Hartz said that the anemia meant that he was probably bleeding in his intestine for a long time to get the level so low.

Dr. Hartz diagnosed Fritz with a Stage 3 or Stage 4 Lymphoma. Stage 3 means the cancer showed up in 2 spots of the body, below and above the diaphragm. Stage 4 signifies that the cancer could involve other organs. There is uncertainty as to if his is 3 or 4 because the CT and PET scans were not definitely conclusive as to all of the indications actually being cancer.

The prognosis was this: This is a curable Lymphoma if Fritz goes through 6 rounds of Chemotherapy. Fritz expressed some concern that he would never get back the strength and ability to work the Physical Labor-type jobs he had done in the past, but the Doctor told him that he expects him to be back at 100% in 9-12 months from start of chemo.

So, where does he go from here?

Next week, he will have a Port-a-cath inserted into his body. This will allow the IV portion of Chemo therapy to be administered without repeated needle sticks. This will also allow blood to be drawn, for testing, more easily. They will also do a heart pumping function test to see if his heart can withstand the chemo. One of the drugs can do bad things to you heart.

He will start Chemo next week. This is how it will go: The chemotherapy will be in the form of 5 drugs - 1 oral and 4 through IV. This will take place on day 1. He will have to take a pill called Prednizone for 5 days after that. Then there will be no more chemo for 3 weeks. He will also get a couple of shots that help to make red and white blood cells during that time. Around the chemotherapy time, he will also receive IV injections of iron once a week. Fritz asked if it made sense to start taking Iron pills, and the doctor said he could certainly take a multivitamin with iron, but that wouldn't even come close to restoring the amount his body needed to function normally. Also, the chemotherapy will deplete the amount of iron he has now.

He can expect to lose his hair in 3-4 weeks after the start of Chemo, and it will come back 1-2 months after he has completed that therapy.

After 2 rounds of Chemo, they will repeat the CT scan. After round 4, they will repeat a CT scan and a PET scan, after round 6 he will be done with the chemo. They will follow up every 2 months for the next 2 years. If they see no indications of any more cancer in that time, they will consider him cured. They will do weekly blood work to monitor his progress and he should expect to spend all day doing Chemotherapy when he has to.

He also went to a Chemotherapy teaching session after his first appointment, where they really told him everything to expect and all about the drugs. He was also given a list of names to contact for various issues that he might have. I asked Blanche to try to get in to see the Social Worker that dealt with cancer patients before they left today, so that maybe they could get some advocacy for the financial and electrical stuff they have had to deal with. She was going to try to do that, but I did not stay to see if that was possible. Hopefully she did and the lady could do something for them.

I hope that helps to clear up some worries. It is still serious, but the doctor seemed really more optimistic that I thought he might be, and I think that God-willing, Fritz will come out ok on the other end in a few months.

When I left Fritz, waiting to go in to the Chemotherapy briefing, he said that he would really like to hear from everyone. He said please call him and Blanche at home.


I love you all,

Bobbi

P.S. If I forgot anyone, please forward this on also. Thanks a million.

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28 May 2008

From: Al Marin

To: Lou Marin

Hey

I just got done with surgery to insert a port-a-cath in my chest were they will check my blood and administer chemo. I have shaved my head and am in good spirits so far. I start chemo on Friday morning it is going to be an all day thing once every three weeks. We went to Carol's last weekend and had a great time.Hope all is well with you.

Love

Fritz

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4 June 2008

I gave blood today. Before I go into details, here is a good sight for blood donors:

http://www.donate-blood.com/site2/content/donor_faqs/donor_faqs.asp

When I give blood, I do Double Red Cell Donation. One good website for information on double cell is:

http://www.my-redcross.org/index.cfm/p/Double-Red-Cell

Being an O positive blood type, I am asked to give extra. No problem. The only side effects I suffer from double cell are an extra amount of time sitting in the donation center chair, and a general feeling of lethargy for the rest of the day after donating.

I try not to complain, because I know others who need blood, or who have blood and marrow problems live with far worse than I go through every day.

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6 June 2008

An update on my brother Al. Yes he has made it through round one of Chemotherapy a week ago. Sometimes the flow of information is slow, due to the distance between here and Maine, and various factors in all of our lives.

Here is the latest email traffic, oldest to newest:

From: patsy marin
To: Martinez, Bobbi

Hi Bobbi . Fritz made a trip to the Ellsworth hospital last night. He was in pain, his hip and that side of his body. It was a reaction to the medicine.

He has to call the Cancer Center today in Bangor because Ellsworth think he needs a blood transfusion.
love mom

From: Ellingson Lois
To: Martinez, Bobbi

Thanks for the update Bobbi. Does Fritz have any clean compatible blood supply or will they need donors for that?

V/r,

TSgt Lois Ellingson

From: Martinez, Bobbi
To: Ellingson Lois TSgt

I don’t know. I just asked Mom for more information about it and this is what she sent:

HI Bobbi

They gave him a really strong pain killer and the reaction will stop in a couple days. It was to a shot they gave him a week ago. he has talked to the doctor in Bangor and they won't give him a transfusion unless it is the last thing they can do because he would have to be hospitalized.

His white blood cells are very low.

-mom

Regards,

Bobbi M. Martinez


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20 June 2008

From: patsy marin

To: Martinez, Bobbi


Hi Bobbi

Fritz got up yesterday morning to big amounts of his goatee having come out so he shaved the rest off, he liked that and it bothered him he lost it. He is very tired today and is laying around alot.

I have the painting Hazel Carter is donating here. She took it off the wall in her gallery with a price tag of 375 dollars on it. She also brought a dish with chicken in it for supper tomorrow night.

We have 40 things to auction from a wall cross to jewelry,

It looks like we will have a good turn out of people too. It was announce at 4 different beano in 4 different towns and in the paper.

We are all tired but if they get some money to help them it will be worth it.

love mom

From: Al Marin

To:Marin, Louis J TSgt

I am not having a banner day today but things will get better.

I am finally back online so it will be much easier to corespond with every one.

I only have my mustache and my eyebrows/lashes left on my head for hair not that being bald is bad but I lost my goatee damn it.

Thanks for the Prayers etc.

Love you Fritz

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28 June 2008

Sometimes I get too worried about the speed of my own life, and too wrapped up in how hard I am working to worry enough about others.

This email from my brother Al helps me keep perspective:

lucky man
‏
From: Al Marin
Sent: Sat 6/28/08 3:55 PM
To: lou_marin

As I sit here telling my son about Uncle Lou and reading from Lou's Writing page as he falls asleep in the chair beside me.I can't help but think how lucky I am to have two happy healthy kids and the support of a great family and some awesome friends in my fight against my illness.Without the prayers and kind words this would be allot harder to handle.

Love Fritz

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From: Al Marin
Sent: Wed 7/09/08 4:08 PM

To: lou_marin, bobbi martinez, carol berryment, jeanne miller,

As you already know my pet scan results were excellent. I believe in miracles now for sure to have come back from so much so quick and to be given a new chance for life. I don't think I could have done it with out an awesome woman and the love and support of an equally awesome family. Just because I am in remission doesn't mean to stop praying it has helped allot. Blanche says hi to everyone she has met.

Love Fritz

P.S. Please pass this on to Dave

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Yes, I believe in miracles and constant prayer. May God continue to bless and keep us all!

-Lou

Balm For a Tired Spirit

When I thirst He brings water to refresh,
when I am weak, He restores my flesh.
To His everlasting will I submit.
He is the balm for my tired spirit.

The Lord walks with me and guides me.
In His love from prison I am set free.
On a heavenly throne He continues to sit.
He is the balm for my tired spirit.

The Lord is my Sheppard I shall not want,
to Him I call when the devil comes to taunt.
As promised, my loss He does not permit.
He is the balm for my tired spirit.

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9 September 2008 Update:

All still seems to be going well with my brother's remission. For that I am truly grateful to God and a strong family standing behind him!

Al has some problems that have plagued him for all his adulthood, and presumably his life. His drinking and anger worry me, and I pray that he goes to God and continues to look for strength and encouragement every day.

I am thankful for his being medically saved, now I pray that he is spiritually saved.

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From: Al Marin
Sent: Wed 9/10/08
To: louis marin, gardnerswife, justme4282003, suziq223,lmellingson, cberryment, jbalmartinez

I finally had my last chemo treatment today.I think that I am almost back to 100% as far as strength and ability goes.I still tire easily and am having problems with my knees and feeling in my fingers and hands I hope as the poison from the chemo and other prescribed drugs leave my body this too will pass.It is hard for even me to believe the speed at which my body has been taken back from near death to being well again.I know for sure with out the help prayers and support of a few good friends and one hell of an awesome family it would have never happened as fast as it did.I know that I don't say this often and it isn't easy for me to say but I love you all.

Thank you all from the bottom of my heart.

Love Fritz

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4 October 2008

Update:

I realize that life, and being grown up makes us choose options that may not always be the best. My choices are well thought out though.

I chose the Air Force as a job in early 1991, somehow over time it became my life, and I can not think of doing anything else really. With that choice came sacrifice, and I am sure it will continue to come.

I have not been able to take leave/vacation for various reason since Al was diagnosed. I was told that unless it becomes time for emergency leave, I would not get time off. We are that busy and stressed for manning here.

I finally have leave scheduled to start tomorrow morning. I am glad and thankful to God and modern medicine that I will get to visit my big brother in a mostly healthy state.

God bless us all everyone!