Chemo Infusion 1/12—Disclaimer, Specializations and Centralized Data

Dear Friends,

Summary

My chest port was successfully installed in a 1+ hour sedated operation on Tuesday (though, in truth, I was in the hospital several (long) hours for both pre-op and post-op activities). Yesterday Krysia drove me to the Cancer Clinic for my first chemo infusion.  It began around 9:30 a.m. and continued steadily (one bag of medications being sequentially replaced by another) until 3:45 p.m., by which time Monica had relieved Krysia and was to take me home. I was sent home with a little fanny pack containing a bottle of chemicals that needed to be infused, continually, for an additional 48 hours.  As I write this, I’m connected to the fanny pack through my chest port. I slept connected to the bag last night, have had it pumping away all day, and will have to sleep with it again tonight.  Tomorrow, when the bottle is exhausted, I report back to the Cancer Clinic to have it disconnected.  After that, I’ll have a week off, have some blood tests taken, and–blood results proving acceptable–will repeat the process on Wednesday 14th (and thence every two weeks for the next 6-7 months).

I’ve already experienced two side-effects: one, predicted; and one, not quite.  The first is that my blood sugars are elevated.  That is explained by a steroid drug that is part of my protocol.  The elevated blood sugars are likely a temporary aberration, as far as we can tell.  (We’ll be monitoring the levels.)  The second side effect is that whenever I attempt to put any food in my mouth (be it moist or dry, savory or sweet, etc.) I immediately react with a sharp pain right beneath my ear lobes, about the point where my jaw hinges. (Some of you may recall experiencing something of the kind when, as a child, you may have accidentally chomped down on a sour plum.)  What is causing this second effect is being explored at present. There have been previous patients at the Clinic who have reported similar side effects. Their records are posted in the archives for my benefit and the benefit of other incoming patients like me.

So, all continues to be well.  I’m delighted to be actively engaged, finally, in the process of ridding myself of the cancer that was first diagnosed six weeks or so, ago.  Since that time I’ve been involved in what I call “preparation and training.” Now I’m happy to be finally actively dealing with the elimination of the cancer.  It feel emotionally satisfying.

Details

Disclaimer

Before I delve into the details, I feel a preliminary observation needs to be stated at the outset:  It is clear from my reading and intuition—and it is verified by my observation of other patients at the Cancer Clinic—that each person reacts to their cancers differently, as they do to the medications that are prescribed for them. The protocols to treat individual cancers are themselves unique, having been formulated, as precisely as possible at any given point in time, through clinical observation of individual cancers and how each metastasizes.  The results of those studies are matched with laboratory analysis of the behavior of specific chemical molecules and compounds. The chemical prescriptions are precisely designed to thwart and curtail the damaging action of specific cancers.  Each is different; and each patient’s reaction to the chemistry is also different.

This is so complicated that nothing I can write about my personal experience can be directly applicable to any experience others undergoing cancer treatment may have, except in a most anecdotal and general way.  Whatever may be applicable or useful is likely merely to be how I convey my personal attitude about my own experience.  I suspect personal expressions are generally interesting to read because—in the aggregate—accounts of different personal reactions are ones from which we can glean bits and pieces to help us understand the variability of our individual, nevertheless common, human experience.

Specializations

Previously, I expressed my enthusiasm about the anticipated Chest Port that had been recommended to me.  I can now say my hopes have been vindicated.  Having a Chest Port through which the various poisons (er, “medicines”) can be administered is wonderful, obviating the individual, painful, top-of-the-hand IV insertions.  I’m becoming more aware of the specializations of service providers in the medical profession.  My Chest Port was installed by surgeons in the Interventional Radiology Department (a department I formerly never knew existed). I was sedated just above the level of consciousness at which I’d require an artificial breathing apparatus to help me breathe.  But I was thankfully uncomprehending of what was taking place as the surgeon sliced into my chest, at shoulder level, dug out (there’s probably a more appropriate and delicate term to be used here) a little “cave” into which he could slip the appliance (I called it a “doohickey” in a previous e-mail) and suture the wound shut.  Then, he attached a small tube to the appliance and snaked it further up into my shoulder, where he cut another slice so as to better grab the tube and insert it into the major vein heading into my heart.  Having made the insertion, he was then able to snake the tube further down towards my heart, tap everything into place, and close up the two slices with derma-glue (which is basically a form of super-glue detoxified and neutralized for surgical use).  The Chest Port appliance has a little membrane atop it, surrounded by Braille-like protuberances that can be felt, through my skin, by a qualified nurse.  She/he can then insert a special needle through my skin, and thence, through the membrane.  Once inserted through the membrane, the needle is held quite firmly. Access is thus easily provided directly to my circulatory system. The opening to my vein and heart, at the other end of my tube, is at a point where it can readily and rapidly circulate my chemical cocktail throughout my body.  One can even take blood draws through the port, should it begin to be difficult to obtain them in the regular way through my arms.  So its a very satisfying simple-but-effective device inserted by a specialist that was likely imagined and manufactured by a (mere) highly insightful and empathetic medical engineer, wherever in the hierarchy of medical status such a person might be positioned. I’ve benefitted from a huge variety of differing skills of the (already) more than dozens of individuals who have had responsibility for a unique and specialized piece of my care.

Online Document Database

My Clinic has all its health documents online in a centralized database.  My caregivers can see what every other caregiver has prescribed and what procedures I have gone through.  They can access all the relevant reports related to my previous care.  Not only that, but I, too (and my family) can have the same immediate access to the same information via a password protected web site: procedures, medications, reports, etc.; my entire health history.  The exciting benefit of this collection (of otherwise inert) data, is that its easy availability enables collaboration among disparate specialists (giving the inert data a form of life).  Having the data so easily accessible actively encourages collaboration.  It is easy to ask questions or make consulting phone calls because all the relevant data is at one’s fingertips, along with the contact information (e-mail addresses, phone numbers, pagers, etc.) of each of the specialists involved in my care.  This has reinforced my positive opinion of President Obama’s encouraging the conversion of medical information from paper to electronic form.  Its a good idea, “whose time has come”.  It can have many ancillary productive and economic benefits!

A more pedestrian observation I noticed yesterday is about the arrangement of my wallet!  I was surprised to find that the most convenient plastic card slot (the one that has “primacy of position” in my wallet) is presently occupied by my Medical Identification Card (so often must I retrieve and show it to someone).  The credit card that used to enjoy that favored position in my wallet had been displaced.  I was bemused to find it had been relegated somewhat lower and behind the Medical ID Card.  (I daresay, somewhat reluctantly, that the credit card will likely be obliged to return to demanding service in days to come!)  In the meanwhile I’ve been searching for the “Frequent Visits Program” to which I can enroll to collect awards points for each visit to the Cancer Clinic. I am looking forward to eventually trading in my multiple points for BIG PRIZES.  I haven’t found it yet… if you happen to know the URL, please send it to me.

I felt entirely well and energetic all day and reported for cantoring duty at the Cathedral at noon.  But I almost couldn’t lead the Communion song.  Having received the consecrated wafer on my tongue, I had to sit down to let the pain in my ears pass.  You would think, wouldn’t you, that the Good Lord would excuse reasonably devout people receiving Communion from suffering side effects of cancer treatments?!

Sorry to be so long in sharing these observations.  Brevity certainly doesn’t come easily to me.  That’s what the “Summary” and “Detail” sections (above) are about.  If you don’t want lengthy rumination, just read the Summary, stop, and delete the rest of the e-mail (or simply stop reading the blog entry).  The Summary will be sufficient to let you know that I’m doing well and continue to be appreciative for your support, prayers, notes, cards, and good thoughts.  They each contribute to a feeling of humility, goodwill and healthy optimism… nearly as important, I’m convinced, as the protocols of medications I’m receiving.  (Though I wouldn’t want to choose between them, if only one were on offer.)

Chet

Related

http://www.bardaccess.com/port-powerport.php

Colectomy recuperation and “losing control”

Dear Friends,

Summary

All is fine.  The recovery from my colectomy surgery is as perfect as can be.  Very neat and smooth repair of the incisions, thanks to the careful attention of my surgeons and the little metal staples that held my abdomen together during the initial healing process.  I think I’ll be completely scarless when this is all through.  After such a short time, I’m able to bend, sit, walk and otherwise exercise with no distracting pain.  In addition, I seem to have passed the disconcerting period I experienced when I seemed to be competing with Rip Van Winkle in my ability to sleep incredibly long hours.  Twice this month, I was able to get to the noon Mass at Oakland’s Cathedral of Christ the Light where I’m the Thursday volunteer cantor.  With luck, I hope to resume docent duties, too, though that will likely depend on my reaction to the chemotherapy.

Detail

I feel I’m quite prepared and ready for the next phase: the actual chemotherapy treatment.  The Cancer Clinic conducted a very informative and comprehensive “Chemo Class” which gave me a lot of information about what I might expect.  I’m scheduled to have a subcutaneous port installed tomorrow.  The port is a plastic doohickey that will connect directly into one of my large chest veins, and whose opposite end will be somewhere under my skin in the area of my shoulder.  Being covered by my skin, the port won’t get contaminated or dirty, and will allow me to shower and otherwise remain as active as I want.  Its totally “cool” technology, and it will be permanently installed during the forthcoming 6-7 months.

When I report for my first chemo infusion Wednesday morning (31st), the nurses will be able to feel around and connect the IV drip directly through my skin to the doohickey (and thence to the vein for circulation).  This will eliminate the need for repeatedly installing an IV into the top of my hand.  Since I don’t find the “hand IV” very pleasant, the port appeals to me as a perfectly sensible alternative, especially since I’m scheduled for some 12 bi-monthly sessions of infusions (which would require a lot of repeated IV installations).  Each of the infusions will apparently take 3-4 hour sessions in the Cancer Clinic (so I’m expecting to catch up on the pile of books in my “to be read” pile).

In addition, as I presently understand my schedule, once each month I’ll be sent home with a little fanny pack that will pump additional chemicals into my chest port for 48 continuous hours.

The day before each infusion I’ll be having blood drawn to check the status of my platelets and check, especially, the count and condition of my white blood cells.  The white blood cells constitute one of the main components of the human immune system.  But they will also suffer degradation from the chemotherapy treatment.  So the docs will carefully analyze my blood counts (and especially monitor the count and condition of my white blood cells to make sure they don’t drop below a safe threshold).

Losing Control

The “losing control” is evidenced by the fact that nothing seems entirely permanent in this process.  Schedules change at a moment’s notice due either to evidence obtained from the numerous blood draws, CT scans, and other lab tests I’ve been taking, or doctor’s availability and unexpected schedule changes.  Monica and I have learned to “take it as it comes” (which, for organized and conscientious people is much easier to say than to experience.)  But the learning is not optional… its imposed.  So the frequent schedule changes and calls to come to the hospital for this or that test is taking a bit of an adjustment.  Nevertheless, I’m looking forward to actually beginning a regimen intended to battle the cancer.That will start next week, Wednesday morning.  A good time for continuing good thoughts.

Ending this obviously positive report, I wanted to share with you a temporary residual effect of removing the metal staples securing the surgical incisions from my colonectomy.  My skin around the former incisions is now attractively patterned with what looks like a tattoo of water striders.  I’ll be a little disappointed when those disappear as the physical healing continues!

Monica and I thank you for all your continuing good wishes (as do Michał, Anastasia, Stefan and Krysia).  Keep those good thoughts coming.  They are much appreciated (and obviously efficacious)!

Chet

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