In memory of Mom
Jennie Patterson
It has been two year exactly since breast cancer took my mother. It's strange to think that this has been the longest time that I have ever been away from her since I was born. I lived with her for most of my life and even when it came to college, I choose to stay in Chicago so that I could be close to her. Within these two years a lot has happened.
Right after my mom's death, the hardest thing that I could remember was not to pick up the phone to call her. Every day I would arrive at work and after getting settled in, she would be the first person who I would call. I remember when I was at my old job and hearing over the paging system, "Jennifer, your beloved Mother is on line one." That always made me smile. Even thought she and I had some arguments, like every mother and daughter does, I would love to have just one more chance to just say hello to her. I know that will never happen.
Months had passed and I was diagnosed with MS, I had put my pet ferret to sleep, and was suffering from great depression. What a whir wind that time was! I can remember really wanting my mother by my side then. She was the "Information Queen." That woman absolutely loved to read and always had her nose in some mystery novel or newspaper. I envied her for that. My grandmother was the same way, but for her it was romantic novels. I do enjoy reading and am trying to do more, but I can only hope to be such an avid reader as those two were. I know that if my mother were still living I would get all the information I needed to keep me informed of the whole MS deal and everything else.
I have to say that even though I have been through a lot in the past two years, the two people that have been there by my side is Jim and Rick. Jim is my "Information King" now and Rick is my shoulder to cry on. I don't know what I would do without either one of them. Jim has been the most WONDERFUL dad anyone could ever have. He takes me to all my doctor's appointments, comes over when I'm sick, and is always there for me when I need him. He's been there for everyone in his family from what I've heard. He is just such a unique, kind, and loving man. If anyone deserves the best it should be Jim, my dad.
The problem here is that cancer has now hit him. Why is it that so many good people out there get struck with illness and yet others who are far from good keep living and making other lives hard? I understand if God needs some more good people up there, but this is ridiculous. All I hope is that Jim keeps his strong will and good spirits going. His stubbornness should help as well right now. I will be there for him through anything and everything. Today is a difficult day for him as well. He loved my mom just as much as I did. I have to say that I have never seen such a beautiful couple as them ever in my lifetime. Even though they were both ill at different times and life threw obstacles at them left and right, they both had love to keep them positive. Six years was the extent of their love affair, but it seemed like much longer. Jim made my mother so happy and I am thankful for that. When she passed on, she knew that she was truly loved and that is one thing that helps me come to terms with her death. Another thought that makes me calm is that no matter if the worst happens I know that Jim will eventually be there by mom's side and that their love affair will continue into eternity.
Within these two years, I have been through every emotion that one can go through. I have also had some great moments that I won't forget, such as Rick proposing to me. Even though these times have been hard, I know that there is so much out there that is good and worth living for. I personally love life and hope to live a very long time. I figure that with all the crazy things that I have been through I am capable of handling whatever hits me. On the anniversary of my mother's death I will raise a wine glass to her and say make a toast. My mother wasn't just an amazing person to others; she was also the most wonderful mother ever to me. "To my Beloved Mother, thank you for everything…I love you."
Your Beloved Daughter
Jennie
James R. Turk
My daughter Jennie hit you with her great news and I with my bad news.
I'm very happy that she and Rick are engaged because I know he will take good care of her and she of him. One less worry for me!
What, me worry? You bet I did, not knowing what the future has in store for me. My cancer is officially called Esophageal Adenocarcinoma. That's the medical way of saying, " Hey big boy, you got something growing in your Esophagus that don't belong there."
My first gut reaction was that I was doomed, because it is the same cancer, in the same place, as my brother Franks'. So being a Turk, I went about putting all my affairs in order, even planning my own Memorial Service. I made all the arrangements for my remains to go to the Anatomical Gift Society of Illinois, the same as Joan's. (They told me that the research hospitals must have found something interesting in her remains, because they normally do not keep them this long.)
Some of the women at work thought I was really morbid for doing this but when I gave Jennie the binder I had made for her, she said she was going to ask me about my affairs and what I wanted if something should happen to me. She was very happy that I took time to put everything in order. (Jennie knew I had a tumor, but I kept the fact that it was cancerous, until after I saw the surgeon.) She took the news rather bravely that night but sort of fell apart the next day when it all sunk in.
When I saw the surgeon and he told me that my lung operation was nothing compared to this, I thought, holy God, they damn near killed me then. What am I in for now. It was almost a sense of relief when he told me that I would have to go through all these other tests and then chemo and radiation therapy. Now I had more time.
Am I still worried? Not really, I now look at this as a challenge. I know what Joan went through and I expect the same will more or less happen to me the same way. I even told Jennie that it won't be as traumatic for me to loose my hair, I hardly have any, anyway. (Joan woke up with her hair in a terrible knot. I tried to untangle it for hours but to no avail. I had to cut off those beautiful golden locks.) So in the 4 1/2 years of Joan's treatments, I was married to a blond, a redhead, a brunette and finally a dark brown-haired lady. I wonder what I'll come back as, probably a tall, muscular handsome guy. Sure I expect miracles.
Jennie and I have had a few conversations since the first one and I assured her that I will fight this all the way, after all, I have a wedding and grandchildren to look forward too. ( Nine years ago, I never even thought that this would ever happen for me and now lo and behold, it is.)
Besides with both Jennie and Barbara claiming I'm a strong willed, stubborn old fart, how can I loose. ( I think they would probably put a big spike in the wall and hang me on it so they could walk by and say, "See, I told you so."
I will keep you informed as to what is happening in the future.
Jim
P.S. I had several conversations with Vivian about telling Barbara to give up the newsletter and instead Betty and she could just write each other. Now here I am with something to say and I'm glad that at least Viv, Betty and Barb didn't give up.
*****
I have now gone through both the bone scan and the MRI (Magnetic Resonance Imaging.) The scan was rather easy except for the 2 hour waiting time between the nuclear injection and the actual scan. I was allowed to eat once they did the injection so that part was OK. The unfortunate thing was the only soft food they had in the cafeteria was Macaroni and cheese and some kind of cheesy potato. So along with a large decaf, that was my lunch. It sufficed though because I was very hungry and thirsty by then. I probably should have brought a can of Ensure with me, that and Carnation Instant Breakfast has become my steady ritual diet. As of this writing I have lost 67 Ibs. in a relatively short time.
The MRI was something else. It is a wonderful imaging system and I'm sure it is a great tool for the doctors but they should have told me about the racket it makes. They do make you very comfortable and they semi strap you in. During the scan the equipment makes a knocking and then a tapping noise. It became so loud in the enclosure that I thought I'd go deaf.
After about a half hour I opened my eyes and saw the tight fitting I was in and went into a panic attack. They stopped the procedure and slid me out so I could catch my breath. They then put earphones on me with some soft music but it didn't help much. Another 15 min. elapsed and then they stopped the procedure again. A doctor came in and injected radio isotopes into a vein on the back of my hand. He told me the rest of the test would now only take 7 min. more. Thank God, I could not have taken any more than that.
If my Oncologist wants any more MRI's they are going to have to sedate me.
The results of the bone scan were negative, so the cancer has not traveled thus so far. (Joan's breast cancer never made it to the bone either.)
I am now awaiting the results of the MRI. Hopefully that will also be...negative. Then my oncologist, (Dr. B, who was also Joan's) will decide on the next course of action.
*****
It's Sunday August 5, the eve of my appointment with Dr. B, my oncologist. As I sit here after the storm, I contemplate what might be said tomorrow.
No one has called about the results of the MRI so it leads me to think they have found something elsewhere. Has my lung cancer now metastasized to other parts of my body besides the esophagus?
I try to envision how will I tell Jennie, Should I call her boss to ask if she could have the afternoon off and then come into her office to tell her? What about Vivian, Barb, Mike, Millie & Bob. How should I tell them? Will I have 5 years, or 3 months? Or is it nothing, except my imagination running wild.
I NEED to be here for my Jennie's Wedding and to see my first Grandchild. Will I make it that long.... I'll find out tomorrow at 1:00 p.m.
Please Lord, give me strength.
*****
Today, Monday 7th of August I saw Dr. B, my Oncologist. The results were what I was expecting all along. Prognosis is not good. If the MRI and bone scan had showed any other tumors they knew they would have been working with a metastasized lung cancer. The results were negative so now they knew they were dealing with the Esophageal Adenocarcinoma, an aggressive form of cancer. (Just like Joan's was for breast cancer.)
The plan is to treat it both with chemo and radiation. The one chemical I will have 24 hours a day, seven days a week administered through a pump I will wear around my waist. The other 2 chemicals I will get starting next Monday, every three weeks.
She arranged for me to see the surgeon on the 9th to put in a portacath by Friday. I also will see the radiation Dr. on the 11th to be measured for the treatments. They are being very aggressive with this in hopes that the tumor will shrink and wither away. Surgery is a last ditch effort because of my heart and lung conditions and the surgery itself is a very tough one.
Keep those prayers coming.........
*****
It is Aug. 9th and I had a 10:30 A.M. appointment with the surgeon who is going to put in the PortACat. Unfortunately it became a 11:45 A.M. appointment when she was called for an emergency consultation.
She explained what the portacat does and how they go just under the shoulder bone making a small incision and picking up a artery to the heart coming from the arm or the neck. They place a small incision in one of these and thread a tube through all the way to the heart. Once this is done they connect the round piece on that goes just under your skin and sew you back up.
The entire procedure is done with a local but they do give you something to put you in lala land. The recovery time is normally a 2 hr. period.
I have to be at the hospital on Thursday at 6:15 AM. for a 7:30 procedure. I hope to be out by 11:00.
I also had to go for a EKG and blood test plus a bleed test to see how long it takes my blood to clot. These were all run of the mill tests.
On Friday I will see the radiation doctor to be measured and marked up for that procedure. I will continue this once I have more information on that.
I need all your prayers...........
*****
I arrived at the hospital on Thursday at 6:15 A.M. for my 7:30 procedure. I stripped and put on a gown, hair cover and booties.
In a short while a surgical attendant came and took my history once again. Then the anesthetist came in and started an IV in my left arm. She explained that this procedure is done with a local but I would have something to relax me. The surgeon was next and he explained what he was going to do. They then came and wheeled me into the operating room. At least this time I saw what the operating room was like, pretty neat.
They transferred me to the operating table where there was a depression for your butt to fit in, I thought hey, why don't they make beds this way. It was very comfortable. They then started to hook me up to all the venous gadgets while another nurse did the surgical scrubbing. The last thing they put in place was a screen to block my face from the actual site that they were going to incise
I heard them talking and even joking about different things that had happened while all the while I felt nothing except a couple times of pressure. I surmised that was when they were slipping the portacash head under my skin. Then it was over!
They wheeled me into recovery where they had a devil of a time getting my blood pressure to come back up. ( It was 98/57 when I arrived and dropped to 79/47 during the surgery. ) It only seemed to want to come to 84/54 so the recovery nurse finally paged the anesthetist and told her about it. She gave her OK to move me into a room and give me juice, coffee and a muffin. I ate the muffin very slowly because I was afraid of choking but I downed 3 cups of coffee.
They did a final blood pressure on me and it was back to 98/57 again. I than called Jennie at work to pick me up, they gave her a number to call when she arrived at the emergency entrance and they brought me down. We then went to I.C. where I stayed until Jennie picked me up after work. She than took me home and stayed overnight. It all went very smoothly.
*****
It is Friday morning and I slept pretty good except for a few times when I turned onto my left side. That hurt pretty good.
Jennie stayed overnight because I was unable to drive for 24 hrs., so she is going to drop me off at the hospital on her way to work. Today I get measured for the radiation therapy which will start Monday. On the way in, I decided that she should drop me at I.C. and I would drive over to the hospital.
My appointment was for 9:30 but as usual the Doctor was late arriving so it was almost 10:30 before I got in to see him. Now I went through another interview, I'm tempted to put it all on tape so I can just play it. He told me that I will be treated everyday for 5 to 6 weeks with the weekend off. Naturally, they don't work weekends. My first reaction after about a week is that I'll be able to eat better but after about 2 weeks when the esophagus starts to get inflamed, I may have a hard time eating at all. I may have to puree everything and just drink it. If I end up not being able to swallow at all, then they will put feeding tubes directly into the stomach where I or someone else can pour in Ensure. (Joyce had to do this with Frank.)
After the interview and checkup a technician took me into this room where there was a huge machine with a slab under it. I laid on this table and took two big gulps of barium and they took a picture. They did this twice. They then took this very large caliper and measured the thickness of the body. She finished that and went to check the X-ray films they had just taken and when she came back in, she marked my stomach area with indelible ink to help zero me in on Monday morning. They make a form that they put into the machine which will conform to my particular need and concentrate the beam on a small area. I'll be "burned" from the top and underside while on this table. (The machine moves, not me.)
So now I am all set for Monday, I checked with both Oncology departments as to whether I can drive and the reply was, no problem! I should be OK until evening, at least that is when Joan started to get sick. Jennie is again coming to stay overnight and I also have Viv, Barb, Mike, Bob and Millie to watch over me. I'd say offhand that the care will be better than any hospital could even dream of giving.
Now we wait...........
*****
Sunday, Aug. 13, 2000
People say to me, "Your fortunate because you know what Joan went through so you know what to expect." No, I do not know what to expect. Yes, I know what Joan went through but how she actually felt in mind and soul was strictly hers. I knew all the outward signs of her disease and reacted to her needs but could never know the turmoil going on inside her body.
Now I will find out first hand approximately what she went through. Every person reacts differently but at least the feeling will be there. My cancer is totally different from hers but the treatment is going to be very similar, in fact I believe most of the drugs are the last ones she received before her death two years ago. It's ironic but I am starting my treatment on the same day she was admitted to the hospital for her final days.
I know that as I sit in that chair with chemicals flowing through my system, she will be there right next to me, giving her encouragement and joking back and forth with the nurses. I'll miss her bringing me coffee as I did for her but her love will be there with me.
That's all I need for now..............
*****
Monday 14th, D-Day
Arrived at the hospital at 8:50 a.m. for my radiation treatment. This time I went right in and laid on the table with the machine on top of me. They put in the form for my particular burn and then took 2 more x-rays they then made minor adjustments as the doctor ordered.
Now it was time---except nothing seemed to be happening, only a whirling type noise coming from behind me. The door then opened and she said the first burn was done and proceeded to adjust the machine under me. It was all very painless for now but I know that in about 2 weeks my esophagus will start to get inflamed to the pint that I may not be able to swallow. (The doctor told me this.) They then took a polaroid of my markings that they renewed from Friday. Every couple days they will re-new them.
I then went up to the 9th floor for my first chemo treatment. They also took me right in. They took my B.P., weight and blood. I then sat in the waiting room for about 10 min. and then Mel, the chemo nurse came in and took me into the "Chemo-Cafe." She explained everything that was going to happen and surprised me when she said I would be here all day. They told me to get a bite to eat but by the time I got to the cafeteria they had just closed so I had to settle for a vending machine muffin and cup of coffee. I took all three of us back up because I knew that I couldn't eat that big muffin quickly.
Mel then brought in the sterile pack that has all the equipment to enter the port-a-cath. She put on a mask and sterile gloves. Then opened a swab pack (alcohol) and cleaned the site. Then came the medicated swab-pack (merthiolate) and again sterilized the port site.
It was now time to enter the port...the needle is 900 with a butterfly wing on top, something like this (diagram) with a small tube coming out the other side. This tube is connected to a syringe full of saline solution. Mel then told me she was going to count to 3 and then I should take a deep breath, at which time the needle entered the port. It was the same as getting a blood test only a small prick feeling. She then pulled back on the syringe and blood flowed in, so it was a good connection. She then emptied the contents back into me, took off the syringe and hooked up the saline solution bag. The flow was adjusted to the right drip and I watched it slowly start to flow into my body.
Now it was time for the first additive, the anti-allergy drugs, pepcid & Benadryl. This slowly ran in and soon I was getting drowsy from the Benadryl. I fought off going to sleep because I really needed to know what else was going to happen. Then came the anti-nausea drugs, decadron and adremet which also dripped in slowly.
Now came time for the chemicals that hopefully will surge through my body and destroy this tumor. First the Taxol which all the anti-allergy drugs were given for. This went in extremely slow for the 1st half hour then speeded up for the next half hour. If I was going to have an allergic reaction it would have happened by now. (Rapid heart beat, dizziness, rash, etc., etc.) For the next 2 hours the drip was speeded up for a total of 3 hours for this chemical.
Mel asked me if I needed some food, as she was going to the cafeteria for lunch. I still had most of my muffin so just asked for a large de-caf with cream. The coffee hit the spot. I then dozed off for a while.
At about 2:20 the Taxol finished and she then cleared the tubing with saline and started the Carboplatin, the 2nd chemical. This dripped for an hour, until 3:30, another flushing and it was time for the 5FU (4 Fluorouracil), the 3rd chemical. This will be administered by pump as I will get this chemical 24 hours a day, 7 days a week or as they call it, 24/7.
The pump is about 3 inches wide and 8 inches long, by 1 inch thick. It has a reservoir at the bottom where there is a small bag of chemicals. It administers 14 cc a day (24 hours). It is hooked into the port and had about 4 feet of tubing that stores in the pouch that straps around my waist. If you have your hand on the pump you can feel when it pumps, about 2 seconds a time.
At 4 p.m. I was finished and drove home. Jennie arrived bout 6:15 and stayed the night in case I needed to go back to the hospital or such. I also gave her the shot she takes every Monday for her M.S.
We had a wonderful Father/Daughter talk
They told me, to take a shower hang the pump over the shower head and cover it with plastic to keep it from getting wet. Only problem is our shower head comes out of the ceiling so I hang it over the bar on the shower door (outside side) and the tube is just long enough to reach. It works though because I have to take a warm shower everyday. The site also has to be covered to keep it dry so while we sat in the kitchen Jennie and Viv figured out how to do it.
Just as I woke up I found myself scratching the site and it was bleeding slightly. So when Viv and I went in for my second radiation treatment I stopped by and Mel re-bandaged and cleaned the site. The 4 chemo nurses are Mary, (Joan's nurse and head of the dept.), Mel, Denise and Denise. They are all wonderful and caring. Anytime anything happens I could come in and they will take care of it.
My second radiation treatment lasted about 1/2 hour. Two more x-rays, some checking and adjustments and then the 2 burns. Not bad!
This will go on everyday for the next 5-6 weeks. On Monday 21st, Joan's 2nd anniversary I go in for a refill on my pump. I'll write about this when the time comes.
Right now I am feeling pretty good. A little nausea and waves of tiredness, but still pretty good.
Tough times are yet to come.....
*****
August 16, Joan's and my 8th anniversary
Woke up at 3:41 with alot of gas. I dozed back off later and when I got up I went into the kitchen to get a cup of coffee. A wave of nausea hit me and I couldn't finish even my coffee.
I then dressed and went for my radiation treatment. Everything went smoothly and I stopped at I.C. to get some shirts and B-Ball caps. By the time I got home I was exhausted. (Now I know how Jennie feels) so I laid down. Viv thinks it strange that I go to sleep so quickly and then get up in the middle of the night.
August 17th. Awoke 5:10 to go to the bathroom. Noticed that my port is leaking blood so I guess I have to go in again to get it changed. I'll have to find out if this is normal or am I doing something that's causing it.
Today, before the radiation treatment they gave me a tatoo on my stomach, just one dot but that hurt like hell! Good thing it wasn't a naked lady. I would have died before they finished. At least now I don't have to be marked with the ink.
The nurse (Denise) in oncology changed my dressing and asked me to stop in on Friday to see Dr. B because this bleeding isn't normal. I said OK.
*****
August 18th -- Friday
My waves of nausea seem to hit more often now and all my muscles are getting sore, especially in the legs. At times I feel wobbly as if my legs are going to give in under me. Thank god I haven't had any vomiting.
Radiation goes rather quickly now because everything is in place. I go in, lie on the table, they set the machine and bingo. I'm out in 10 minutes tops.
The dressing was dry, no bleeding so Denise told me that if I have any problems over the weekend, Dr. B is on duty, so I should call. I remember when I had to call for Joan, they are very good at returning your call. Now I have two days off. I need it.
Jennie has her MS eye check today at 1:00 so I'm awaiting her call. (She's OK for 6 months)
*****
August 21--Monday
Joan's 2nd anniversary, 10:00 A.M.
Went in for my routine radiation treatment. At 1:00, my weekly oncology visit. Took a blood test then waited for results. Blood counts starting to go down but still at an acceptable level. Denise then removed the pump including the needle. Dr. B looked at it because it had started bleeding Sunday. This is when she discovered that the surgeon had put in a double port which is to my benefit because if I ever need 2 IV's they can both go into the ports. Dr. Brown then had to wait for the rest of the blood test to be processed so she could write up the order for the 5FU. I finally left about 3:30.
My face is breaking out like a teen. Denise told me this is normal for the 5FU.
I ate pretty good this weekend. But still lost 2 more lbs.
By the end of this week all my systems should be going downhill. But we'll see. I'm going to try going back to work Wednesday night and we'll see how that works out.
Oh yes, Dr. Brown asked if I feel any pain yet besides the muscles. Nope, not yet but I guess that's also inevitable.
Thought about Moan all day.
I miss you honey...and now I'm just beginning to know what you went through.
*****
Monday, August 28th
Well today I went in for the start of my third week of treatments. I went right to the radiation dept. to have my treatment; no problem there. After that I went to the 9th floor for my regular visit with my oncologist.
Hector weighed me (I gained 2 lbs) and then took all my vital signs. My BP was 98 over 50, Pulse was 89 and my breathing was at 20. He then drew my blood; (Joan always said he was the best at doing this and I agree.)
I was then put into an examining room to await the doctor. After about 10 minutes she came in with her thumbs pointing to the floor. That was my first sign that something was drastically wrong. My blood counts had dropped to the point that my immunity no longer exists.
She called the radiation oncologist and they confirmed that I would skip this week of radiation treatments. She also took me off the 5FU pump until my counts come back up. Mel, the nurse, removed the bandage and cleared the port-a-cath as before and with my deep breath she pulled out the needle. In doing so, I started to bleed profusely. She yelled for Denise to bring some gauze pads but soon these were soaked. The blood was dripping on her gloves making them sticky. They put pressure on for a while and then as it had stopped, she took a wash cloth and washed the area. They then put on a little band-aid to cover it. She then cleaned my shirt with Hydrogen Peroxide, which really works great at removing the blood.
What's in store now? I have to be extremely careful not to get an infection. I will stay away from stores, church and crowds. If it get a scratch or cut I must cover it with anti-bacterial ointment and a bandage. Please no burns either.
I must take my temp every now and then and if it hits 101 I'm instructed to call the doctor immediately; no waiting to see if it drops. I may even have to be hospitalized, where I surely will catch something. Also, no hugs or kisses either, they could kill me.
My new temporary treatment is a strong antibiotic taken twice a day and when I go in on Friday she will let me know if I have to start shots to build up the cells. (This I did for Joan so I have already asked Jennie if she could do it for me.) I won't know until Friday whether they will give them there or not.
The first thing I do tomorrow is take a warm shower without having to hang that pump on the shower door and trying to keep my bandage dry. I think I will ask Helen to sew up some kind of cover that will keep me dry. She can sew anything!
That's all I can think of for now, the story continues Friday.....
I still have hair.
*****