Not much to tell.

Until 10 July I wont have much info other than how I am feeling [I suppose I can write about something else].
Yesterday I got a call from my attending physician Dr. Wang informing me that my blood work, from Monday was good; encouraging.  I am back driving and that seems fine save for the fact that I'm drinking 4 liters of water a day.  Have to be very careful.

Out/Home

So… Friday rolls around with promises of me going home.  All the usual visitors and encouraging news is accompanied by a nice breakfast another dose of Prednisone and Allopurinol.  Another stab of Fragmin brings the announcement that Sam wants to clean the room.  He’ll wait until I’m discharged.  You want to take a shower?  Sure.  Oops, you can’t; you still have an IV.  Well, take it out.  Can’t; that’s the last thing we do.  Use the body wipes.  Isabel comes in and says I’ll be ready to go in 90 minutes. Lunch arrives.  I call Bruce to come and get me.  90 minutes later he shows up but I’m still hooked to my damn tree.  It’s getting close to bad traffic time.  The Pharmacy arrives with my confiscated vitamins and a new bag of goodies to take home.  Allopurinol 300mg tab… 1 a day orally until July 22.  Omeprazole 20mg capsule… orally daily until July 22.  Ondasetron HCL 8mg  tab… orally every 8 hours as needed from 6/20 to 7/9 [for nausea and vomiting],.  Prednisone 20mg tab… 5 tablets orally every day for 2 more days on 6/23 and 6/24.

My discharge papers also announce my next appointment on 10 July at 9:30AM in HEM/ONC Bldg. 203 1^st floor 1B, with Dr. Mannis [replacement for Dr. Phillips].  I will have an infusion at 10AM on 1B, room 42.  This will be Bendomustine and the dreaded Rituximab.  I will be released and plan to spend the night in SF returning the next morning for the same thing. 

Nurse Linda comes in and removes my IV; I finish dressing, grab my gear and Bruce and we flee.  In minutes we are stuck in Novato rush hour traffic and I am happy as a clam.

No Title, No Picture

Thursday started with Vital signs at 6AM, blood work and breakfast at 7.  Scrambled eggs, wheat toast, Oatmeal, banana and coffee.  The coffee is actually good and always very hot.  They have very good, insulated, institutional dinnerware.  My mid-morning visits from my medical teams all had positive things to say.  And here come the drugs.  Fragmin stabbed into my belly.  This is a great little device many of you more familiar with medication may have even used it.  The drug is in a little 3” plastic cylinder with a half-inch needle at one end and a short plunger at the other.  It is well packaged to avoid accidents as it is often sent home with patients for personal use.  Once you expose the needle you stick it firmly into the flesh and press the plunger to inject the drug.  When you hit the bottom of the syringe a little release snaps the needle up into the syringe so that it is no longer exposed and non-reusable.  A new bag of saline was followed by injecting the Cyclophosphamide [in Canada, Procytox] in two shots, not by drip. It appears to be a pretty useful drug treating many of the same maladies I have previous listed but also lupus and MS.  Its function is to “harm cancer cells causing their death” and as a bonus it lowers the body’s harmful response to diseases of the immune system.  Vincristine [Vincasar PFS] is used to treat leukemia and cancer [“it harms the cancer cells causing their death”].  This was given as a drip of 2-3 hours.  The administration of this drug was almost as scary as the rituximab with the warnings, robes, etc.  A drop leaked onto my sheet [the hookup wasn’t secured] and they had to strip the bed and put the sheets into a hazardous waste container. I am still tickled by the idea that it can be so dangerous to handle and yet it goes full bore into my frail and delicate body. I was also administered the allopurinol and prednisone again.  I have one more day of prednisone [Sunday] but continue with the allopurinol for some time longer.  Caroline came to visit today bringing me a wonderful mozzarella sandwich from Cheese Plus in SF.  That was followed by a chocolate gateau [same source] and a champagne truffle from a Swiss chocolatier also in town [the name escapes me but the taste lingers].  I unplugged my tree and took Caroline on a short tour of the facilities.  When we returned my lunch was waiting for me.  They were concerned that I did not eat much of it.  I soon faded into inanities and Caroline gracefully departed [I would have been looking for a stiff drink nearby].  But my spirits were greatly lifted and I fell asleep quickly and slept soundly most of the next 8 hours.

Shear Joy

I woke the next morning with sun barely reaching the beach though a heavy, cloud cover.  I was struggling to sit up realizing that I had tangled the IV line, the phone cord and my lamp cord.  After freeing myself I surveyed my predicament. I was hooked up to an 18 hour drip of Rituximab.  Rituxan, the brand name, is used to treat blood problems, leukemia, lymphoma, rheumatoid arthritis, GVHD [graft-versus-host-disease????] Wegener’s granulomatosis and microscopic polyangitis.  It harms these cells causing their death; it is always shot into the vein over a period of time.  It is only given in a well supervised and observed hospital situation. 

I was given lunch and dinner the night before and they were underwhelming. The morning of day two at about 6AM a nurse came in and took blood in two vials.  At about 7 I had breakfast of frittata, potatoes, grits, and fresh fruit cup.  Every meal had a whole wheat roll, coffee, 1% milk and condimenti.  Another worker came in for my vitals [blood pressure, temperature, blood oxygen and pulse].  Another came for a nose swab.  Another came to weigh me.  Another came to check if I had urinated and/or had a bowel movement.  The little chaplain visited again and left disappointed.  Then the doctors stated marching through.  The Attending Physician for this stay was none other than the legendary Dr. Lawrence Tierney [really, look him up; he’s big stuff!].  The most regular visits were from Isabel Edge [no lie!] a fourth year UCSF Med. Student [Don’t you love it… soon she will be Dr. Edge!] and Sahael Stapleton, MD who is in residence at the VA.  There were three or four different nurses every 24 hours and each had a nurse’s assistant.  Sam came to clean the room daily [I would take my tree and wander the halls while he tidied].   Nutritionists, social workers, the donut guy, and others kept me awake during the day.

After the Rituxan was through I was given 5 20mg tablets of Prednisone and one 300mg tablet of Allopurinol. I got stabbed in the belly with Fragmin.  Fragmin reduces the possibility of pulmonary embolism.  Allopurinol reduces production of uric acid which can cause gout.  Prednisone is important in the treatment of non-Hodgkin lymphomas [which I got] when used in conjunction with the anti-cancer drugs. 

There was nothing on my TV so I got back to my wicked book “Against Nature” by Joris-Karl Huysmans.  Shear Joy!

Oh That Blanket

The United States Military has discharged me once more 50 years later.  I left the VA hospital at Ft. Mylie about 2:30 today and just got home, grabbed a pint of green tea ice cream and away we go.

I went in on Tuesday and immediately discovered I would not have Wi-Fi [they are getting it though].  I have some catching up to do.  Bill and arrived at about 8:45AM having been told the earlier you get there the faster you will get a room.  We were finally told to walk over to the hospital at 10:30.  My room was ready at 11.  It was worth the wait.  It’s a single and the only room with a view of Ocean Beach through the dancing feather tops of the cypress that surround the campus.  I had a semi-private bath shared with the adjacent room but he was non ambulatory so I was it.  I packed but did not need to.  Everything was provided.  I had comfortable XXL cotton scrubs [switched out every other day], all necessary toiletries [donated by local hotels and spas], and a comfortable magic bed that did everything you asked it to do [the linens changed daily].  My friend, Dennis, was the first visitor and he got to watch the infusions of the chemo.  I was hooked up to saline for a while to make sure I was hydrated and Nurse Sheila and assistant arrived with the stuff.  This was quite a project.  They wore protective gowns and special gloves to handle this liter bottle [a glass bottle that looked just like Absolut Vodka] with those scary danger logos on everything.  It was all scanned a dozen times with nurse and asst. checking back and forth finally hanging the bottle of the tree with the greatest of care.  The IV connections were also special so that not a drop could escape and touch anyone or anything… and they’re gonna pump this stuff directly into my vein?????  Within 10 minutes I felt a great deal of pressure on my chest.  Sheila was standing there the whole time while I was chatting with Dennis.  She disconnected it and came back after I had relaxed and reconnected it.  About 20 minutes later while talking to Dennis my teeth started to chatter.  As the rate of chatter increased I pressed the RED nurse button and Sheila rushed in and disconnected again.  By then I was unable to even say a word the chattering was so rapid.  I was given some Demerol to calm me down and was hooked up again a short while later.  As I got groggy Dennis departed and I dozed.   I slept very fitfully waking every ½ to 1 hour.  Toward midnight I woke freezing cold and cold for the nurse.  I told her I need more blankets.  A moment later a diminutive Philippina Angel floated in carrying a preheated fluffy cotton blanket which was gently placed over my shoulders.  I went back to sleep and managed several 3 hour naps.  But, Oh, that Blanket!!!  Sometimes the simplest pleasures….

WiFi

There seems to be disagreement among those who dispense instructions for new residents at the VA.  There may be; there may not be...  worst case scenario, I will have my phone and will be able to email and post on facebook even if I can't blog so bear with me.  I will compose daily and post on the blog first chance I get.

RCVP

This morning was good news and very satisfying. Wednesday’s biopsy determined the “bulky disease” [the mass in my abdomen] to be low grade consistent with the lymphoma occupying other sites in my body. This diagnosis now opens the way for treatment. Often low grade B-cell lymphoma is left untreated, as its growth is so slow that it may not cause problems for a very long time if ever. Because of the bulky nature of the mass is my belly, however, there is a real danger of bowel obstruction and other complications. It was therefore determined that we would try to shrink the “tumor burden” I will enter the VA hospital at Fort Mylie on 19 June for 3 to 5 days for the first cycle of debulking chemotherapy. Because of the nature of the drugs being administered and the length of time the drips need to be in place, I have to be monitored carefully. There are numerous dangerous complications possible but unlikely. If all goes as planned I will be able to waltz out of there under my own steam and carry on with my life until the next cycle [generally they administer 4-8 cycles]. The drugs being administered [for those med-geeks out there] are Rituximab [Rituxan], Vincristine [Vinasar PSF], Cyclophosphamide [Procytox] and Prednisone [PredniSONE Intensol]. I have several monographs on these and the procedures, which I will read thoroughly and revisit in a subsequent posting. My attending physician during my treatment is Dr. John Gordan, a young “fellow” in the same program as Dr. Phillips. There was a bit of unfortunate news this morning; Dr. Phillips just got engaged!

Everybody wants to do it their way

We started out at 5:30 stopping in Santa Rosa for coffee for Bruce. I was fasting which is synonymous with starving. We had easy traffic with only a slowdown at the Petaluma Bridge. Fort Mylie at 7AM is quiet. We made it to the lab and had blood drawn in 5 minutes. Next stop, Ambulatory Surgery Unit and an hour wait. When I was called I had to strip and don a lovely green frock which I was quite taken with. It fit. The last time I was given one I could not get my other arm in it let alone get it to cover anything. I was taken to a space age gurney and told to lie down. Bruce was then allowed into the pre-op unit to sit with his suffering friend. An elderly chaplain approached offering solace and graciously withdrew when he realized his services were better employed elsewhere. We waited another hour in which I was fitted with an IV apparatus. We then went for a short ride to Nuclear Medicine. Bruce was unceremoniously relegated to the waiting area. I quickly understood that my procedure was once again changed. They were going in through my belly. I was wheeled into the CT room and made comfortable on the sliding tray. I was hooked up to all the pinging machines and introduced to my team. Doctor Gupta would be doing the material extraction. There was a least one other doctor in attendance, 2 nurses and 3 or 4 assistants. After a couple of passes in the CT machine a grid like screen was placed on my belly which would appear as a map on the final pre-surgical scan. A sterile wrap was opened on my belly exposing my hernia bulge. Four injections were made to numb the area, each one penetrating deeper. I could sense a slight burning as the syringes were emptied. Now for the good part. A very large [!] needle was placed through my belly into the mass. Another scan determined that it had indeed reached its target. This was used as a channel to guide the subsequent apparatuses [shouldn’t that be apparati?]. There were 4, maybe 5 syringes used to “suck” in material. Once inserted they were wiggled a bit and slid in an out ever so slightly, removed and passed to the pathologist who would request “more!” The final insertion was the big one. Planted deep into a node it made a loud click and was removed. At this point I was getting pretty exhausted and was rewarded with the pathologist saying, “that was a really good one. We have enough.” I remained on the machines for another 15 minutes and was then taken back to recovery. After another hour and a tuna salad sandwich, I was released. I am restricted from lifting for a week. I have already informed my clients on Thursday, Friday and Saturday that I will not be helping them with their bags. No problem. Everyone was very nice. Bruce and I high-tailed it out of there and headed to Nordstrom Rack to find some water sandals for Bruce’s annual trip to go fishing in Baja. He came away with a nice pair of Merrill’s AND a nice pair of acid washed canvas Sperry’s. He be stylin’. For lunch we stopped at Avatars in Sausalito. Peter Jones has been hawking this place to me for years and we found out why. It is a Mexican-Punjabi hybrid and it is well worth a visit. I just took a long nap.