A Tale of Meningioma and NLPHL Hodgkins

Still in remission!!

2011-11-27T09:06:00.000-08:00

I had approx 2 year PET Scan and CT Scan at Albuquerque VA last week. Nothing new!! Still in remission. Had a stomach reaction for several days, probably from the Barium....don't forget to flush that crap outta your system with LOTS of water for a couple of days!

Reflections on emotions

2011-05-23T15:35:00.000-07:00

I have reread my blog. I realize that I did not record a lot of the emotional side of what I went through. Now I have a close family member who has been diagnosed with Stage III Mantle Cell Lymphoma just last week. He is going through a lot of the emotions. I have been helping to be his advocate for the best care that can be found.
I first learned that I had cancer on a Tuesday when I was getting processed through a very routine CT scan for an unrelated issue. BAMM! by Wednesday I was driving home wondering if I had days or weeks to live!! My whole world had caved in. As the days went by I dealt with my emotions by becoming completely immersed in internet research on the topic. Fortunately, within a week or two, I learned that I was stage II lymphoma with two major clusters in my abdomen. Emotionally I thought FINE maybe I'll live six months to a year. I little more time to plan, but my life was still closing in. I started looking around me and was VERY thankful being a partner with the best woman I've ever known and having a wonderful, supportive family. We are JUST financially OK to not get terribly panicked about the future. I started thinking about how I might spend my last year on earth. By the time had had my actual diagnosis three months down the road, I was LUCKY enough to find that my NLPHL lymphoma could actually be treated for a complete remission!! Yahoo!!! bring on the treatment. Now, after a year in remission, I still kinda think that the cancer cells can take hold again and that I may eventually die of this nasty disease. BUT, I could also die from a piano falling from an airplane. My experience has left me for the better, bound to enjoy and savor what life I have.

If you work hard to learn everything you can and push for the best, soonest treatment that you can, then you can quickly get to the emotional point where you can feel that you are being treated by the best people and that there is a LOT of possibilities for living a quality life.

No trace of active" cancer !!!

2010-04-12T15:44:00.000-07:00

Went down to VA on 3/29 and had PET scan. Got resutls from oncologist same day. I have no active cancer.......I think that means that I have a chance of not having cancer again for quite a while, if ever! We flew on to Alabama for the rest of the week and celebrated the news wirth our new grandson, Knox.

I feel VERY lucky that they found it early and that it was treatable. Stopping by the VA infusion lab and seeing the continuous stream of 30 or so vets that are probzbly a lot less luvky than myself, I felt very humbled. Cancer ain't like the Super Bowl. Results aren't final. I assume that my cancer may rear it's head again in a year or 10 years or 20. Right now I glad to have the opportunity to regain my strength and go mountain climbing again this summer. Yahoo!!

I DID get a case of SHINGLES in January that has progressed to the "post healing nerve pain stage." I was a little angry with the doctors, who did not tell me to be on the alert for the very clear shingles symptoms. If you know anyone getting cancer treatment and is over 50 or so, they are a prime candidate for shingles, but the severity can be reduced by taking Valtrex before the rash breaks out. You first feel like you've bruised a rib for a couple of days and then you develop flu like symptons for a couple of days before finally breaking out. Tell your doc that you want to be ready for Valtrex if you develop the first sysmptom. I didn't know what was happening.....shingles! what's up with that!

Anyway...........I am elated with the healing news and I'm ready to go get life again!

5 days after #8

2010-01-02T09:01:00.000-08:00

Final infusion...for now !!! I will return for rebaseline PET scan on March 29th. I would guess that the worst I may have will be a slowly developing new cancer. The best will be complete cure. I am doing very well. It seems like the side effects lesson towards the end of all of these infusions. I'm looking forewardd to regaining my strength, hiking, traveling, and enjoying family and friends in 2010!!!

Two weewks after #7

2009-12-20T07:25:00.000-08:00

I've gone through the usual 2 weeks, mostly low energy. Heading into week 3, I'm feeling good. New Years eve will be 2 days after the final #8. Roberta and I will watch the Virginia Tech - Tennessee game. We will be rivals!

2 days after #7

2009-12-09T16:57:00.000-08:00

We blew back through Albuquerque on Sunday, 12/6, for chemo on Monday, 12/7, We were on the road back to Pagosa by 1:00.....just in time to race the blizzard home! So I'm back to my steroids and neupogen shots for a week. Low energy, weird dreams will be status quo for the next 6-8 days. Number 8 on Dec 28th will be the last !

Five days after #6

2009-11-21T13:32:00.000-08:00

Doing very well. Got through 5 days of steroids with only one completelt sleepless night. The hacking cough has NOT returned ! I'll see if it resurfaces over next couple of days while I'm still taking neupogen type shots to restore white blood cells. Main issue is very low energy.........I can deal with IT!

We leave on road trip to California on Monday. Will swing back buy Albuquerque on way home, December 7th for #7.

Day 1 After #6

2009-11-18T18:53:00.000-08:00

Infusion #6 was same old, same old. Back home first night, steroids wolk me up at 2:00 AM....wide awake till 5:00 AM. Have moved around slowly all day. I'm ready for the 5-6 day steroid non-sleep grind! If that's the worst I got then HEY ! No hacking cough yet. When I went for infusion I mentioned coughing to infusion nurse and she said that another patient had been given some codiene cough syrup and it worked well. When the oncologist came by I had a list of all my malidies, including the cough. She didn't say anything, so I mentioned the nurse's reference to the codiene and asked if I could get some and she said SURE. You gotta be your own advocate!! Don't expect a specialist to tend to all of your needs automatically.

Day 10 After #5

2009-11-05T08:18:00.000-08:00

Thursday......after taking last neupogen shot on Tuesday. The hacking cough and mild bone pain has ceased, very suddenly. I'm am now sleeping very well. I woke up on Wednesday morning with a deep dull pain in my lower spine. Took two over the counter pain pills.... back pain ceased and never returned.

So, as expected, starting with Wednesday PM, all major side effects are gone, except low energy.
I will spend the next week trying to completely recover energy and any lingering remnants of the chest cold that I had.

Day 8 after #5

2009-11-03T13:46:00.000-08:00

The chest hacking cough finally subsided enough such that I didn't get out of bed till 5:00 AM last night. Today is last neupogen shot. I've got pretty low energy during the day. Looking for everything to improve starting tomorrow!!

Day seven after #5

2009-11-02T11:34:00.000-08:00

I am sleeping much better aftter ending steroids. Still struggling with chest hacking all night. Looking forward to seeing how hqacking tapers off after last "neupogen" shot tomorrow evening. My prediction is that on Wednesday/Thursday hacking will taper off and I'll resume healing of lingering chest cold caught 2 months ago!

Day 6 after #5

2009-11-01T06:07:00.000-08:00

Quit steroids on Friday............finally sleeping Saturday night !!! what a relief! Chest congestion is slowly healing. I don't really have lungs filled up. It's like my lungs slowly develop phlegm and I continually cough it out. When I'm also on steroids, the nights spent awake and coughing are no fun, but I can grin and bear it, knowing that it passes after stopping the steroids. I'm beginning to feel a little bone pain again, that I assume will abate aftter I stop taking the white-blood-cell-building shots on Tuesday.

5 days after #5

2009-10-31T08:56:00.000-07:00

Have spent 5 days doing steroids, and started white-blood-cell-building shots (8 days). Major discomfort is steroids keeping me up at night and return of hacking cough intermitently all night. Last steroid intake was yesterday, so sleeping should start improving. My theory is that chest cough is remant of cold caught 6 weeks ago. I think I get a short healing period during 3rd week. So, I should heal my chest congestion up week after next, just before #6. Otherwise, I will still be able to pyhsically plug along with window repalcement project starting this weekend....so I can still get around. Looking forward to heading for California to see new grandson the Monday after #6!

Processing Infusion #5

2009-10-28T12:02:00.000-07:00

Had #5 on Monday. Got started by 9:00 AM. They give me a bunch of pills for side effects, including the first batch of steroid and some benydryl. Then I get IV drip of Rituxan for 90 min, followed by 1/2 hr drip and nurse "push" of the three other drugs. I was done by 12:30. On the drive home back to Pagosa, the benedryl purts me in la la land for about 4 hours. Then the steriods kick in and I I become jitteRy guy for the rest of the night. The third week reall seems to have restored me to about 90 percent. The intense coughing due to bronchial tube restriction has subsided. I requested and received an inhaller just incase. I'm starting back on the one shot per day for 8 days of the white blood cell building drug. We've got some snow and cold in Pagosa till Friday, so Roberta and I will hunker down and watch the World Series (grew up in Trenton, so I'm a life long Yankees Fan). I feel good! (If your starting this or know someone, don't forget to use Biotene mouthwash daily, it's great)

Getting back to normal after #4

2009-10-19T18:05:00.000-07:00

This is week 3 after infusion #4. I go for #5 next Monday. Side effects status........... I had quite a chest congestion last week. This week I seem to be SLOWLY getting rid of it. I'm down to a nusance cough that develops when I talk at length. I stopped in Albuquerque for chest X-ray and consulation last week when I took Roberta down for her flight out to Alabama. X-rays showed clear lungs. Dr did not alter anything. Leads me to think I may be developing mildly chronic lung passage condition that may hang on till I'm totally thru with chemo. With my urging, the doc has decided to go ahead with 8 infusions. I don't think there's much data on whether 6 or 8 makes a difference for my flavor of cancer. Since I seem to be handling it well, we decided to go for it.

So, we'll see how the lung condition goes after next week. The bone ache in left foor has 95% disappeared. This was a reaction to the neupogen type injections that I take for 8 days post-chemo. I am developing a very slight tenderness in my gums...hasn't affected eating yet. I haven't lost a pound since starting ( I got the best cook and bottle washer !). There are a couple of other minor things .... All of these infirmities just seem to take a LOT LOT longer too heal.

October/November will speed by. Roberta's son and partner had a baby boy 2 weeks ago and I am a new grandpa TODAY!! My daughter, Laila, lives near Sant Cruz, CA. We'll be taking the pop-up camper out for Thanksgiving!

Fourth Infusion

2009-10-13T11:57:00.000-07:00

I caught a 48 hour cold on Wednesday before infusion #4. ended up with slight chest cold, but got about 85% better before Monday infusion on Oct 5th. Early morning PET scan indicated that tumor "uptake", ie activity had been reduced by about 75%....good news! Doctor is still mulling whether to go with 6 or 8 infusions. My 5th infusion will be October 26th, and #6 will be November 16th. We head to California to see Laila's new baby on November 23rd.

A week after infusion, I seem to be plagued with chest congestion, which keeps me up at night. Taking TheraFlu to help. ALSO, I was surprised to wake up on Saturday with a severe bone pain in the arch of one foot. Limp, Limp......... Taking non-asprin pain reliever seems to pretty well, enough to allow me to continue remodeling job of changing out the windows for a customer.

Final shot of neupogen type drug today (build up white blood cells). It will be interesting to see if bone pain goes away by end of week.

Surprise Fatigue

2009-09-29T14:09:00.000-07:00

It's great to be past that uncomfortable chemo feeling. It's a tough one to describe if you haven't experienced it. It's a kinda of weakening churning in the chest and abdominal cavity. Got past that last week, after return from Lake City. I felt kind of weak and exhausted on Monday and napped most of the day. Gradually felt much better over next few days.

On Sunday we climbed Pagosa Peak, about 4,000 ft. above our 8,000 ft home. I've climbed it twice before in about 2 hours. To my surprise, it took me 4 hours of slow trudging this time. Yikes!! I'm now realizing that I'm suffering from pretty low energy. Today I did a simple siding repair for a customer. Shoulda been a simple 2 hour task. After 3 hours I was physically exhausted! So, this is knew. If I rest and do bookwork I don't notice fatigue. And I'm eating lots of good food ! Funny that this is starting this far down the road...ready to do 4th chemo on Monday.

On Monday I will also have PET scan to see how it's all doing.

Losing some taste

2009-09-23T17:52:00.000-07:00

Had a great weekend in the San Juans. It IS turning to winter here. This week it will be freezing in the mountains with some snow! I've got a low energy level going, I think due to the neupogen shots, which I fianlly finished yesterday.

One odd symptom I'm noticing over the last week is that I am losing the taste of several foods. Last week I noticed that a bunch of wonderful grapes tasted like just water. Hamburger still has the textual taste but the great flavor ain't there. I was drinking SOBEs last week, but am suddenly repulsed by them. The very thought of some foods actually starts to make me feel nauseous. Fortunately, Robeta makes great chili, so I eat a lot of wonderful enchiladas and burritos! I can still taste a lot of sweet stuff. I hope it's due to the neupogen and that I will now regain all the lovely tastes!

I hopefully will now recover my strength and tastes over the the next few days and have a great week next week before #4.

Third infusion

2009-09-16T18:16:00.000-07:00

Had my third infusion on Monday. Drove to Albuquerque from Pagosa on Sunday. Started infusion at 10:00 AM Monday. Done by 2:00. Back in Pagosa by evening. I take steroid pills till Friday, which plays havoc with sleeping. I'm also giving myself neupogin injection everyday for eight days to build up white blood cells.
I've kinda got the routine down now, so the unknown has dimished and I can plan the weeks. I feel well enough to work paper work and remodeling tasks at a slow pace. I'll have some mild chest congestion while I'm taking the shots. We're taking the pop-up camper into the San Juans to Lake City for a wine and music festival for the weekend. Roberta will have to drink for 2! By the end of the second week I'll be starrting to feel fine again. During week three I'll be back to normal energy level. Then I'll have the next infusion on the third Monday. On the day of infusion #4 I'll also get a PET and CAT scan so the oncologist can check the effectiveness of the chemo treatment.

Weird symptoms

2009-09-01T10:05:00.000-07:00

Monday night...... took last shot of neupogen around dinner. Two tylenol around 8:00 PM. I slept VERY well. No background mental semi-dream all night.....just 3 long periods of sleep and "normal" dreams. Morning symptoms......... felt weak and bone/muscular weakness during mile walk. Also feeling a little faint when getting up from sitting. This could be due to using diuretic med which lowers blood pressure. Will relax this morning. Through all of this I have kept up simple remodel schedule.......stain a house, work on bids.

Ache and shortness of breath would not allow 10 mile hike today! Hopefully by weekend.

Appetite is good. Reading recipes for crab cakes and and breakfast burritos!

Week Two after 2nd infusion

2009-08-31T09:26:00.000-07:00

Been taking neupogen shots to increase white blood cell counts for 7 days. Neupogen works right down in the bone marrow. Last shot today. I normally take shot around dinnertime. Last night I took it around 9:00 PM after evening get together at a friends house. Weird night! I was very sleepless, achy, light sleep, up to pee every hour. Weird mental half-dream state. Bones ache some this morning. Took good mile walk this AM. Will take last neupogen shot earlier tonight. I guess neupogen is causing bones to ache....meaning it's working ! I'm off steroids for this round. Infusion number 3 in two weeks.

Infusion #2 done

2009-08-26T15:04:00.000-07:00

Got second infusion on Monday. I checked in at 8:00 AM. Once they get me settled in to my recliner in the infusion room, they order up the chemo drugs from pharmacy. So actual infusion starts around 10:00 am. The 4 infusion drups go in through an IV (drip or nurse push). They give me a cup full of symtom treatment pills and my fist 16 mg of steroids. Next is 1 1/2 hour of rituxan, followed by nurse-push in of two infusions (30 minutes). Then the final drug is dripped in for 45 minutes. I felt fine coming out. Went to lunch with Roberta, her brother Ron and son Clay. I did half of the driving back to Pagosa. The benedryl and the steroids then battled for control. I napped part way home, but then was up from midnight till 3:00 with a steroid buzz.

I am doing neupogen injections. I give myself a small needle in the stomach everyday around 5:00 PM. Seven total days. No big deal. No real pain. The neupogin will go right to my bone marrow to help produce more white blood cells. My white blood cell level is 1600. Normal range is 4000-8000. I was 6000 at start. I haven't felt any bone aching, which might occur.

My appetite is great. We walk every morning. I feel slightly queasy-buzzed most of the day.

We'll see how the energy level rides through the next two weeks. I'm scheduling in remodeling work, at a slow pace.

Ready for #2

2009-08-21T15:04:00.000-07:00

Had a great camping, hiking weekend in the San Juans. I feel great here at the end of week three (Friday). My hair did start falling out on Wednesday evening... progressively more with each morning shower. I'm gonna have a tanned face and a white top next week !

Chemo number two will be on Monday in Albuquerque.....really looking forward to the steroid buzz again next week!

Mid Second Week

2009-08-12T15:23:00.000-07:00

Into second week after first chemo.

I'm not yet perfect again ! After a great weekend of hosting a brunch with friends, going into Monday, I still felt kinda queasy in the stomach. A good walk and rest got me back on an even keel. Since Monday, my symptoms are, queasy stomach, up and down energy, and slight numbness in fingertips. As week has progressed, I keep up a simple schedule, resting, doing some paperwork, mild remodeling tasks, preparing for weekend camping trip.

Going to Durango tomorrow, Thursday, for white bloodcount blood test.

Since getting off steriods, I am sleeping MUCH better.

End of first week

2009-08-07T14:23:00.000-07:00

The weird thing about chemo the first time is having no idea what's coming next, hour by hour! I'm not puking.....will I start puking in an hour !!??

I had my first R-CHOP on Monday. This is Friday. I have only experienced some fatigue and a couple of sleepless nights. My energy level goes up and down between 65% and 85%. I try to walk 1-2 miles a day, rest, and stay as active as I can.

I expected symptoms to get progressively worse. But, I had a good nights sleep last night and feel good today. Yesterday morning a felt a mildly tight congestion in my chest, which seemed to be cured by a good walk. My appetetite is still good. I eat many small meals whenever I want. I dread the thought of developing mouth sores in subsequent weeks. I clean my teeth and rinse with Biotene several times a day.

Roberta and I are hosting a great brunch here tomorrow !! I'll cook some omlettes.

Sha La La La La ... Live for today....and don't worry bout tomorrow.... heh heh!!!

Next week I go get white blood cell count. My chemo is every third Monday.

Adapting

2009-08-07T14:11:00.000-07:00

When I was told that I may have cancer back in March, I spent 2-3 days in shock ! I remember thinking about the future with my family and enjoying the seasons and hiking. Doing a lot of internet research, I discovered that there was long term hope for Stage II. For 4 months I have suppressed a lot of my emotions. I have a wonderful wife who takes care of me, wonderful daughters, a great sister, and some crazy close and related friends, and a dear cat, who all surround me with lots of love and concern. I live in beautiful, natural Pagosa Springs, Co in the heart of the San Juan Mountains. I have a very happy life. I have a remarkable brother who passed away in 2005, who was my mentor. www.dyt108.com. I spenda lot of time getting his art work (music, painting, photography on the web.

I sustain myself through all of this by pushing myself to stay positive and enjoying all of my very simple life.

It has really helped to read other peoples cancer blogs to get a feel for what everyone is going through.

Reviewing Lessons Learned

2009-08-07T14:02:00.000-07:00

I assume that this blog may be visited by folks diagnosed with lymphoma cancer who want the low down and some hope! I've documented my trip through diagnosis. Key lessons:

1) Early diagnosis...... push for everyone you know to get early early testing for cancer. Stage II means that you will feel no symptoms, probably because of no other organs are involved. Early treatment before stage III might mean living forever rather than 5-9 years!

2) Learn everything you can about your treatment and get involved with your treatment. Keep the diagnostic schedule moving..... push, push, push!

3) If you EVER have a doctor or surgeon tell you that "we might wait and see what happens" or "maybe we should wait until something exciting happens" RUN, RUN, RUN to the next doctor!

4) Some SEASONED doctors still believe that life expectancy for cancer is 4-9 years REGARDLESS of what treatment is administered! They are wrong and VERY outdated. DUMP them.

Managing well

2009-08-06T15:28:00.000-07:00

Thurday, day 4. The only symptoms I've had are slight punies. The steroid is keeping me up digitizing family photos from 2:00-4:00 Am. I've developed a minor tightness in my lungs...walking helps relieve that. I'm drinking lot of fluids, walking 1-2 miles per day, and eating as often as possible. I rinse my mouth with Biotene 3 times a day. I nap a couple of times a day. I'm keeping up my routine.... bookkeeping, honey-dos, small remodel projects. We're going on a good day hike this weekend and planning a pop-up camp trip next weekend.

First chemo

2009-08-04T13:07:00.000-07:00

Had my first chemo yesterday, Aug 3rd. The plan is for 6-8 infusions, 3 weeks apart.

I am having the R-CHOP chemo regimen:

Rituximab - A monoclonal antibody that attaches itself to cancer cell

Cyclophosphamide - nasty stuff
Hydoxydaunorubicin (actually Doxorubicin) - more nasty stuff
Oncovin (actually Vincristine) - more nasty stuff (hair loss club for men)
Prednisolone (actually Dexomethasone) - 4 pills per daythis week - a steroid, I'll be hittin em outta the park!

Thinking it might be my last dinner, Roberta and I splurged at Red Lobster the night before. Reported in at 8:00 Am. Big infusion room with about 20 big recliner chairs and 5 nurses. The nurse "pushed in" two of the drugs and then started a slow 4 hour drip of the Rituximab to see how I would react. Just mild drowsiness, very mild sore throat for 1/2 hour. Then finally one more drug for half and hour. Next time it will all take about 2-3 hours. They gave me an assortment of about 12 pill to counter IV side effects (stuff like benedryl). Drove back to Pagosa in the PM. Stropped for a nice Mexican small meal. All I felt was "mellow" probably from the Benedyrl. Good night's sleep.

The nurses were great, the whole team, including my oncologist have been there for about 15 years!

They aparrently computre your body mass index from your height and weight to adjust your volume of drugs.

DIAGNOSIS !!!

2009-07-13T08:37:00.001-07:00

After 4 months of waiting, I finally have a diagnosis! There was some mystery and a little disagreement between the VA pathologist and the Mayo Clinic, but the final diagnosis is that I have Nodular Lymphocyte-Predominant Hodgkin Lymphoma NLPHL. This is a vrey rare form of Hodgkins, but apparently very treatable. My oncologist gave me a choice of 1) having Rituximab only and then "living in peaceful co-existence with my cancer" or 2) having the R-CHOP chemo and standing a good chance of "Complete response" (still tryin to figure that one out). The R-CHOP will be 6-8 infusions every three weeks. Since I will probably be feeling well enough to to meaningful work at least half of the time, I have chosen the R-CHOP regimen. I shouldn't need radiation treatment afterwords. I am STAGE IIA (only tumors in my abdomin and no organ involvement (I experience no symptoms). What is still a mystery is that the internet research says that NLPHL occurs frequently in younger people and most often in the head-shoulders area and that Hodgkins is frequently treated with ABVD regimen. So, we'll start preping for August 3rd to start. We will drive down to Albuquerque (250 miles) have outpatient infusion and drive back home to Pagosa Springs, CO to endure!

I'll trade a vowel for a bowel!

2009-07-04T09:29:00.000-07:00

Happy fourth of July. We will return to Albuquerque next Thursday/Friday to remove staples and visit with oncoligist. I think it will take several days to get and honest bowel movement. I will do lots of research on Hodgkins. Probably won't start chemo till August...gotta wait for surgery to heal. Can't lift nuttin. Eatin small portions.

It has taken 4 months to get a diagnosis. Yikes !

Me and Bobby

2009-07-04T09:02:00.000-07:00

Surgery on Monday..........During the night on Monday, I became aware that I had a tube stuck through my nose and down my throat and I had a catheter. The throat tube was giveing me a sore throat, I didn't feel or wasn't aware of what the catheter was doing. On Tuesday morning someone came in and pulled out the throat tube and the catheter. Very uncerimonious ... and briefly painful. On Tuesday I rolled out of bed, VERY PAINFULL, stood up and waltzed one time around the nurses station with my IV pole. I had been told by a friend to get up and walk walk walk as soon as possible. I was not to have ANY food or drink until Wednesday evening. When you are being continually fed by an IV 24/7 you have to pee about every 2 hours. When they remove the catheter you then have to either roll out and sashy to the toilet or pee in the plastic bottle they supply (10% into the sheets!). I got up 4-5 tiimes each day and forced myself to walk around the hallways. You realize that the only person who really understand you is your 70-something roommate who is just as miserable as you. We could joke back and forth all night.
By Wednesday night I was watching movies on my laptop supplied by Roberta's son Clay. Black Sheep (vampire mutant sheep was a good gruseome comedy filmed in Australia). At 2:00 Man from Planet X ( a 50's black and white) got me back to sleep. I got out on Thursday morning. Taking my first shower, I could finally see that I have a stapled incision that starts high on my stomach, runs down about 6 inches, curves around my belly button and continues staight down another 2 inches. They've installed a sanitary pocket so that I can pretend to be Napolean next Halloween! (not). My wonderful oncologist came by on Wednesday and pronounced that the pathologist had been happy and that the preliminary diagnosis is Hodgkins Lymphoma. Roberta and I spent the night in Albuquerque with family and returned to Pagosa on Friday, July 3rd.

Gotta have my TV!

2009-07-04T08:45:00.000-07:00

On June 29th Roberta and I reported for surgery. I first checked into a pre-op unit where they steal my clothes and get me ready to be wheeled off. Spent about and hour there. Then some folks came and got me and wheeled me down to the holding area in he surgery area. Anesthesiologist waas training a med student to do install the IV. She missed twice. The anesthesiologist then tried and missed.....then a med Dr came by and got it immediately. It's standard protocol for the surgeon to pop in and MARK you as to where the surgery will be. I sad that I had not seen the surgeon yet.....there was lots of calling back and forth because the surgeon thought he HAD been by. So, he finally showed up and informed me that I could lose all bowel and/or sexual function or I could die! I'm thinking .... "and this is only for a biospy!"
The next thing I was aware of was that I was in a ward recovery room.....Yahoo, still alive!......
The first thing I noticed was that the TV didn't work. Roberta joined me and said that the surgeon had told her that the surgery was a total success. The nurses showed me the magic morphine button that I could push myself. I complained about my TV and the nurses said they'ed move me right away. That was about 5:00 PM. When I came out a a haze about 9:00 Roberta was there. I was really pissed at no TV now and was ready to storm out of there. I called and complained again. The nurses moved me to the next room about 15 minutes later!
I pushed the morphine button 13 times the first night......don't remember watching TV.

Bones "What they do back in the 20th Century is sheer butchery Jim!"

2009-07-04T08:28:00.000-07:00

So anyway...........after the useless surgery in May, I ended up scheduled in the GU clinic for the second surgical biopsy try. There are a couple of surgeons that come over from UNM and perform surgery in the VA GU clinic. These surgeons specialize in cancer and can do lots of laproscopic surgery. Yahoo! I went down for a consultation in GU, first with a senior surgeon. Looking at my record for the very first time, he looked at the results of the bogus biopsy and proclamed that "maybe we should be redirecting you towards Infectious Diseases." I was compelled to inform him that "no, it has already been shown through 2 PET scans that I Do have 2 clusters of 2-3 cm tumors that have grown to 3-4 cm in 3 months. He turned and dug a little deeper into the records and said "yes, we probably need to to get in there and get a good sample soon!" He then got me scheduled to see the UNM surgeon later that day who fortunately happened to be there doing some procedures. While I went off for blood work and nursing pre-opt checkout, the UNM surgeon waas able to stop by and take a close look at my PET scans. When I finally met with him he proclaimed that the tumors where in locations far ro risky for laparoscopic surgery, and that he would do open cut surgery. It was a big relief to finally be talking to someone who seemed able to make the right decision. AND he was a skilled cancer surgeon! (A message of mine will always be that you MUST be involved in your medical decision making)

2009-05-16T06:57:00.000-07:00

Went to Albuquerque for surgeon consutation in prep for laparoscopy in belly to get biospy of tumors. Surprised to hear surgeon say that they didn't do belly laparoscopies there! I had thought that it was a done deal. The surgeon suggested that he could find a lymph node somewhere else that would be easier to remove. He also stated that there was a surgeon in Gu who might "give it a try" or I could opt for major surgery that would put me down for 6-8 weeks from my construction business. "What do you think Mr Strickland?" I suggested that maybe a surgeon from the university might be called. The surgeon then acknowledged that there was one of the best lymphoma surgeons in the country there! However, he recommeded that he go ahead and find a lymph node somewhere accessible and proceed with a biopsy in the morning. He found a slightly enlarged node in my groin area. OK..fine.........I got ahold of my oncologist late in the day and told her what was going on. She was surprised and called the surgeon to say that it was unlikely that it was a cancerous node because it had not shown up on the March PET scan. The next morning I had the biopsy.....very quick procedure. The surgeon found Roberta in the waiting room and told here that the 50/50 chance of it being a cancerous tumor was reduced to 1%.............. it looked pretty normal. I now have an appointment to return May 26th and maybe we'll get the ball rolling to get the university surgeon on to do the laparoscopic biopsy!

You da one in the middle

2009-05-05T17:25:00.000-07:00

I'm learing more and more about the medical system. The VA has a lot of compartmentalized specialists................ the oncologist, the radiologist, the general surgeons, the GU group. There is a common data base that they all put reports and instructions into. I have found the actual coordination between the specialists to be a little less than perfect. My role has been to follow through from one department to the next to make sure I get scheduled by department B who was requested to do something by department A. There isn't really anyone who keeps the whole ball rolling. My general practicioner in the Durango clinic has taken a strictly hands off approach to helping to keep things rolling in Albuquerque. I accept this role.....I worked in the government for 10 years, industry for 12 years and as a general contractor for 12 years. My bible has been "The Patient from Hell" by Stephen Schneider.

THIRD biopsy

2009-05-05T17:16:00.000-07:00

I got a call from the oncologist on April 28th. The second biopsy apparently got a lot of material from the wrong place. The pathology report indicated that diagnosis was not possible and recommended surgically removing a node, which is now scheduled for May 15th. I'll go down on the 14th to meet the surgeon and anesthetist. My biggest impatience is that apparent Stage II will turn into Stage II or IV by the time I get the diagnosis! It really helps to make it real to read other people's blogs.

Second Biopsy

2009-04-12T16:48:00.000-07:00

Roberta and I spent the week of April 10th in Albuquerque. She had GammaKnife treatment on her tumor. The staff at Lovelace Medical Center was excellent. We went in at 6:00 AM on Wednesday and were out by noon. I'll let her describe the process. I spent Wednesday evening through Friday morning cleaning out my colon (no food). I went in to the VA center at 7:00. This time I was on my back with the Radiologist inserting the biopsy needle through my stomach. No real pain thanks to local anestetic. I was able to see the CT scan monitor and watched the succession of scans as the radiologist pushed the needle in, guided by successive CT scans.

I was back in recovery by 10:00 AM, but had to lie still till 2:00 PM, before leaving. The Radiologist said that it was most likely a very good biopsy. The pathology department will now analyze for at least a week. I think that the medical team has accepted that I probably really do have a cancer. The biopsy will divulge if some flavor of non-Hodgkins Lymphoma. If NOT non-Hodgkins, then I will probably have to have a surgical biopsy to confirm Hodgkins.

I will spend the next week finally looking at my CT scans and PET scan and developing a list of qusestions for the oncologist when she calls. It is a little frustrating to not have sat down face-to-face with an oncologist through all of this first month of the preocess.

Preliimary Diagnosis

2009-03-31T06:37:00.000-07:00

After a week of requests for info, my oncologist finally called last night and chatted with me for quite some time. She was reading some the pathology report to me. Flow cytometry testing of the biopsy did not find any B cells that were consistent with Indolent Non-Hodgkins Lymphoma. Since my blood tests indicated that there is no apparent involvement with major organs and I'm showing Lymphoma symptoms, she suggested waiting 4 months to see what happens. I believe that it was a major act of luck that my swollen lymph nodes where discovered as a byproduct of being tested for something totally unrelated. I don't think that there is much data on early, stage I or II Lymphoma. I'd guess that most people who are diagnosed have come in with raging symptoms and are already in stage II or IV. I reminded the oncologist that the radiologist who performed the biopsy had indicated that it might have been an invaled sample and had suggested doing a second biopsy. I also told the oncologist that I had a dvd of all of my PET scans and would take a look at the images. As she started to reread the PET scan results and the biopsy summary from the radiologist, she kind of did a 180 and agreed to schedule the second biopsy for next week, when we'll be in Albuquerque for Roberta's GammaKnife procedure.
If the first biopsy was not valid, then the Flow Cytometry results could be invalid. If I do have a cancer then one option for early treatment might be targeted radiation treatement like CyberKnife. However, those treatments have a tumor size restriction. The largest tumors (swollen lymph nodes) in my clusters are already 3 cm. So, in one phone call we went from do nothing for 4 months to come in for the second biopsy next week! I have been reading "The Patient from Hell", by Schneider. I am trying to be very informed and proactive in my treatment. I respect the medical industry and all that they are doing, but I feel that everyone needs to be pro-active if they want the best care.

2009-03-29T06:32:00.000-07:00

It will be interesting to see where this blog goes. I would like to provide info for people who would like to be proactive in their treatment for serious medical treatment. Roberta has insurance. I am in the VA system. We live in a small town in Colorado and both count on Albuquerque resources for major medical treatment. We are currently timing our Abq appointments so that we can combine a trip.....250 miles. Roberta has a lot of family support in Abq. When Roberta was diagnosed, the local GP assumed that it would be removed with surgery and set us up with a neurosurgeon at University of New Mexico in Abq. We proceeded to do days and days of internet research and discovered the less invasive CyberKnife and GammaKnife radiosurgery treatments. By the time we met with the neurosurgeon Roberta felt very empowered to request to be considered for GammaKnife treatment. We will never know if the neurosurgeon would have presented all of the options if we had just showed up for treatment. I'm beginning to believe that if your MD sends you to a "specialist" who does surgery, then you will indeed get surgery!

2009-03-26T09:59:00.000-07:00

I have heard nothing from Albuquerque VA since biopsy on 3/19.
I have done extensive internet research on Lymphoma. www.Lymphoma.org is one of many great web sites. I have ordered the book " The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too" I assume that I have Non-Hodgkins Lymphoma, either Indolent NHL (which is non-curable) or Aggressive NHL (which is curable). I have not heard a peep from the VA. I have faxed requests to the GU AP and the Oncologist for status. I contacted VA radiology records and they overnighted me a DVD with ALL of my scans. I can view all of my scans on my own PC. Ain't gonna do that until I talk to GU PA or Oncologist.

I contacted CyberKnife center in Phoenix and have learned that they do treat VA patients with approval from VA. CyberKnife has limits on tumor size.

I will bug VA Oncology to get status of biopsy analysis process. I want to know who is doing what, not just what the result is.

2009-03-26T09:45:00.000-07:00

Wednesday, March 18th, Albuquerque VA

4:00 PM ..... no record of scheduled biopsy! The wheels get turning!

Thursday, March 19th, Albuquerque VA

7:00 AM.... I report for Biopsy, performed my Radiology MD. I am lying on CT Scan table. Radiologist pushes needle in and checks progress with CT Scan. Took about an hour. Local anestetic and "joy juice" IV. After recovery Radiologist debriefs me and says that he was conservative, and wasn't sure whether second biopsy might be needed. Home to Colorado!

2009-03-26T08:59:00.000-07:00

I am 61 years old, in the VA "system." My wife Roberta and I live in Pagosa Springs, Colorado. My VA local clinic is in Durango, CO. I go to Albuquerque VA for "specialist" treatment. I have been seeing a GU Clinic Physician's Assistant (PA) Albuquerque for a year or so for non-cancer issues.

Monday, March 9th, Albuquerque VA:
8:00 AM ................. Routine CT Scan for non-cancer issues, set by GU clinic Physician's
assistant (GU PA)
1:30 PM .................. Routine appointment with dermatologist, who informs that GU PA needs
to talk to me.
2:30 PM ................. Phone call from GU PA says more blood work and PET scan needs to be
set up asap
Tuesday,March 10th, Albuquerque VA:
6:00 AM ................ Blood draw

Wednesday, March 11th, Albuquerque VA:
7:30 AM ................. Chance meeting in hall with GU PA who has been
trearting me. Says to see him around noon.
8:00 AM ................ Report to nuclear radiology for PET scan. They give me IV with sugar laced
with isotope. PET scan is over around 10:30 AM
11:30 AM............... Report to GU Clinic and am able to see GU PA with my wife. GU PA
informs me that my PET scan results are consistant with
Lymphoma.... two clusters of lymph node tumors in my lower tract,
none larrger than 3 cm. GU PA will call me at home with "thin needle biopsy"
schedule. He has conferred with Oncologist.

12:00 PM................ more bloodwork

We drove home to Colorado, with a flood of emotions and questions ???

Friday, March 13th, Home in Colorado
.... I reach GU PA from home .... he has scheduled biopsy for 19 March