Flying Blind in the Whacky-Juice Ward

[UncleDoug]

Ongoing Journal excerpts from Uncle Doug (note: To the "Old Hands" of the inner SCLC circle; much of these journal entries may seem simplistic, but remember, they're primarily for friends and family who are totally untutored about the workings of the beast on our emotions and spirits.:

Wednesday, Thursday and Friday, April 6th, 7th, and 8th After much discussion and bargaining (to be related at a separate time) we, (Don, Barb, mom and myself) decided to let their son Chad undertake the probationary job of ?Caregiver to the Stars? (mom and me.) We debated long and hard on making him the official caregiver to the 2008 U.S. Olympic team, also, but couldn?t find out where to send the requisite $5.00.

Today is the big day! Today is the first day of chemotherapy for me. Just before going into see Dr. Xuan I had blood drawn. Both drugs have an adverse effect on the platelets (red blood cells) and white blood cells of the body. Cancer is a fast-growing cell structure. Most chemotherapy drugs are designed to destroy fast-growing cells in the body. This is bad for the cancer - since they go first ? but also bad for other fast-growing cells in your body. White and red blood cells are both fast-growing cells, and both are critically important to the body?s health and well-being. They must be monitored closely and often. If they get too low, therapy must be halted for a time ? most cycles of chemotherapy allow for this, and are designed (such as in my case) for a period of ?rest? between cycles, so the body can renew itself. My program involved three days of infusion, followed by eighteen days of rest to renew the bodies blood cells.

Some other fast-growing cells in the body are affected also. Keratin, which makes up finger and toe nails, as well as other parts, are affected. Hair follicles are fast-growing. That?s why your hair falls out. The drugs confuse them with cancer and kill them. Goodbye Columbus, hello Jell-O. I don?t mind the head hair, so much, but I?ve had this mustache for almost 40 years! Oh, well, they say it does grow back 5-6 weeks after treatment.

After having my blood drawn in the lab, I went and saw Dr. Xuan. She wanted to go over the scans I had had on Monday. First, though, she had to call the radiologist?s voice mail to get them. For 5 minutes I saw her nodding her head and saying, ?Yes?, ?Yes?, ?I see?, and ?How ?bout them Mariner?s??

Now, pay attention, this is humongous news for a cancer survivor. CS?s live and die (literally) by the results of scans. Scans can be of any part of the body, and taken by a multitude of radiology machines: MRI?s, CT?s, PET scans, X-rays, etc. They show whether the tumor has grown, shrunk, stabilized or simply disappeared. Dr. Xuan turned around in her chair, and in her own inimitable and inscrutable, style, informed that both my bones (whole body) and my head were completely ?Mets free?. That is, the cancer had not metastasized to any other part of my body, except that which we already knew about ? the left lung and right adrenal gland. What that means is, although they can?t operate because of the nature of the lung tumor; and they can?t radiate because of the placement of the adrenal tumor; they could, still, chemo the shi_ out of both masses ? at least as long as my body holds up. Remember, all jokes aside, my health is pretty good. I?m 10 years younger than the median age for lung cancer patients and, I believe, my attitude is good. Therefore, I have the right to linger on the immortal words of the cowardly lion, and croon, ?I do believe, I do believe, I doooo believe!?

Since the actual procedure all three days of the first cycle are identical (the entry of the drugs into the body, I?ll condense it down to one day.) The first thing you notice is how clean, pleasant, light and airy the infusion ward is. There are several rooms, but the main one, and the largest, contains about 8-10 large, reclining, leather chairs. Each has it?s own TV, chair-side stands and IV trees. They are arranged in a semi-circle, looking out on the hospital grounds and the waving aspen trees. The rest of the room are nurses stations and an area for a full-time pharmacist. Staff outnumber the patients about 2 to1.

As soon as I?m seated they take vitals and start an IV in my hand. I?ll be taking two drugs which I?ve mentioned before: Carboplatin (Paraplatin) and Etoposide (Vepesid, VP-16). My nurse is Linda and she?s training an oncology nurse named Ginny. These are not the rosy-cheeked, 24 year-old, just out of LPN school, nurses. These ladies are experienced, well-paid, senior RN?s who?s professionalism is matched only by their concern and passionate commitment to the job and their patients. They?re also funny and sweet; they know how tough their job is, and how seriously their patients and caregivers take their own responsibilities.

As a paean to their commitment, on the first day Linda asked what kind of pain I was having, how bad and when. I told her about the missed sleep at night due to what I thought was simply being in a prone position in bed. Linda called over the pharmacist, Paul, and together they convinced me that my pain med dosage at night should be higher. I agreed, but didn?t want to come off like some kind of an addict to my doctor. They said that they?d handle Dr. Xuan. And they did. Paul returned in 10 minutes with enough new medication to allow me to double my night-time ER (extended release) meds without abusing my breakthrough IR (immediate release) pills. Linda was all comfort and empathy. She explained that if ever a patient needed strong pain medication, it was now. She said that on her ward, no patient was ever uncomfortable due to pain . . . ever. And I believed her.

I mentioned before that I had consulted with a surgeon who was going to place a portacath or a subcutaneous catheter, under the skin of my left shoulder. This would allow the nurses in the chemo room the ability to connect directly to a vein in my neck ? relieving both them and me of the hassle of placing an IV every time. This portacath could also be used to draw blood and inject medication, if needed. This was my routine for three days in the ?Whacky-Juice Ward? at TG.

I now had eighteen days for the drugs to do their thing, while my body struggles with the effort of keeping itself alive while doin? it. It?s been three days now, on the drugs, and so far, no side effects. I?m told that that will change after the next cycle, especially in the fatigue department. My friends, Pat and Brian, point out that everybody is different. Some suffer very few side effects, while others simply can?t tolerate the nausea, fatigue, bloating and hair loss that are often symptoms of their body slowly dying; but trying to die slower than the beast that?s inside of it. In the immortal words of Chief Dan George, ?Sometimes the magic works . . and sometimes it doesn?t.?

[cindi o'h]

Uncle.

Congratulations on getting your feet wet. This is a whole 'nother world where you are. So very glad that you have confidence in your team of Medical Professionals. It helps immensely. They sound both caring and competent, two of the denominators for success.

Looking forward to more musings and, of course, minimal side effects from treatments.

love, Cindi o'h

[Addie]

Hi Uncle Doug....

And hey...if attititude counts....you've got this thing licked!

It's great news that there is no further spread than to the adrenal...but why, I must ask, are they not able to radiate your lung? In many cases, concurrent chemo and radiation of the primary lung tumor produces good results. I do realize some tumors show up where it's not possible to radiate....but your bio doesn't specify (unless my chemo-muddled brain missed it!)

You can read my bio below. My good attitude the first time around didn't get me more than a 4 month remission...but THIS time I'm looking for better than that!! I met a woman yesterday in chemo with recurrent breast cancer....who says she's been coming in once a week for chemo (about 2-2.5 hours each time) for the past THREE YEARS!! But she looks wonderful and is stable and if the price is weekly chemo, she's willing to "pay it".

We do need to stay positive and try to look at this as a chronic illness...but one that can be treated and either get us to stable OR to a remission.

I started out journaling my experiences too...but now I just keep a calendar of sorts. My biggest concerns these days is getting some hair back (and in a color I recognize as my own ) and getting back out on the golf course!

Sorry you have the need to join us...but we can always use someone with your humor and attitude.....and I hope you find good support and info from being here.

Oh...and by the way....for some odd reason, my fingernails are growing like weeds!! Small consolation for not having had any hair since last June...but they DO allow me to scratch what itches!!

Hope chemo continues to go well for you. The fatigue has been the worst of it for many of us....but go with the flow a bit. Don't fight it. Take cat naps and then exert when you have a little extra energy. Avoid crowds when your white cells dip....but Neulasta works well for that and Arenesp or Procrit helps the red cells, when needed. I've yet to need a transfusion even tho my platelets did get fairly low.

Good luck, Doug....and I look forward to hearing more from you!

[SDianneB]

Doug says: "Now, pay attention, this is humongous news for a cancer survivor. CS’s live and die (literally) by the results of scans. Scans can be of any part of the body, and taken by a multitude of radiology machines: MRI’s, CT’s, PET scans, X-rays, etc. They show whether the tumor has grown, shrunk, stabilized or simply disappeared."

Ain't it the truth. And sometimes, they show lots of stuff that is nothing, or nothing that may be lots of stuff. Go figure. The wonders of modern technology.

FWIW, I didn't lose my hair during chemo -- it was the PCI that got it. Well, it got it on the sides and left me with a rather undignified looking mohawk variation that I soon shaved off to match the rest. We're all different -- we react differently. I didn't have a problem that required transfusions or any of the meds, but did have to postpone chemo for a few days one time when my platelets went under 100,000. They came right back up in a few days. I didn't have the port. Lots of different things happen to different people going through about the same things, I guess.

I love your "journal" and that you are sharing it with us. I agree with your assessment of chemo nurses as well -- they are super. I have a niece who is an RN and she knows about what extra training is required to be a chemo nurse, and says "no thanks."

Looking forward to the next installment!

Di

[Larry]

Doug attitude is every thing, and as a saying goes i'm laughing on the outside while crying on the inside. There not as far as we know not 100% sure there is a tumor on my wife's spine so she's getting the work's so like they say in the ol ball game to play it safe......Keep up the great attitude as it can rub off to those that need it....