Cretins and Salivations!

No idea where that line comes from but thought it appropriate for the day. We're in Cleveland resting up from all-day tests yesterday. I've hooked into the the hotel's network so I could update folks freely (and for free, hooray); will contact Geek Squad when we get home as I'm tired of being off-line.

I've spent time since the Friday before Labor Day getting the swelling down in my throat with steroids. As a consequence I've been off Afinitor since then; taking steroids in combination with these targeted therapies reduces the drug's effectiveness by something like 65%. At the price of Afinitor, I want a drug that works! I can swallow pills, food, and drink now, and am ready to go back on the drug therapy.

Yesterday's results were a complete success. No surprises on the labwork, all looked normal; the pelvic and abdominal scans were stable. The chest scans showed stability in the new lesions that had popped up in the last scan, even with just 4 weeks of treatment with Afinitor, and the big bad lesion in my right lung had reduced by 30-40% so it's less of an obstacle while we address the remaining disease progression. Top that off with Dr. LA's pronouncement of "beautiful" results from my MRI, indicating no activity in the brain lesions, and it was a great, great day.

I hope everyone else is dealing with the same level of success and good news - can't tell you how good it is to be alive and FEELING alive. My dearest Saint H has completed all the paperwork for retirement effective October 31 2010, after 24 years of service to the university. Then he's mine, mine, mine! I'm so excited I could burst!

How Things Are Going

I finished my course of 10 radiation treatments on July 20 and returned home on the 21st, completely exhausted and troubled with pain in my right shoulder. I spent much of my time the remainder of the week asleep, as the exhaustion was completely debilitating. I did have a birthday, I think, but I mostly slept through it. My friend Swanknitter had made arrangements to visit from the 25th, so I was happy to be awake when she arrived. I was still absolutely flattened by the pain, which seemed not to be responding to anything. I had been switched from Dilaudid to an Oxycontin/Oxycodone combination and I was feeling quite ill from the diminishing effects of the radiation, the new painkillers, and other accumulated problems. I was finally feeling better from the radiation by the 28th, to the extent of having an appetite and getting some energy back.

Dr. G had asked that I come back for new scans on the 30th so we'd have a new baseline set. Swanknitter and I finished up our visit on the 29th and she returned to DC to head home to Australia from there, and we headed up to Cleveland that afternoon. The scan results weren't great but they weren't hopeless either: I'd been off all forms of treatment since end of April, so no surprise to see progression in the lungs. Test results also showed that I had high blood calcium levels, and that was probably to blame for the complete exhaustion and slight confusion I'd felt after getting home. I was given a two-hour, two-liter infusion of saline, and an infusion of my old friend Zometa.

Dr. G also made arrangements for me to meet with Dr. R of the Pain Management Clinic. Her recommendation was to continue on a reduced dose of the Oxycodone, the dose of Oxycontin that I was already on, and to add to this a prescription for Neurontin. Dr. R's nurse Brenda said, "As it is, nobody knows how it works or what it does, but it works and that's all that most people ask."

I was able to fill my first month's prescription for Afinitor before we headed home, and Saint H handed in my Neurontin prescription to fill at my local pharmacy after we got home.

I sat down last night and wrote out my pill schedule since so many things have changed: we start at 7:00 a.m. and can run continuously through 24 hours every 2 hours, if I'm awake, though the blessed Brenda says "we don't set alarm clocks to take pills, for heaven's sake!" I like that thinking. Also, last night having been the first complete cycle including the Neurontin, I'm thrilled to report that I have very little pain in my shoulder for the first time since November of last year. It's great to be witness to one of those little mysteries of medicine; I don't have to know why Neurontin works, either; just the fact that it does makes me happy. I look forward to improved conditions in the coming days. Wah-hoo!

On Treatments and Loss

The schedule questions finally got resolved with a couple of phone calls on Tuesday, 7/6. Julie, the Social Worker in radiation oncology, called me mid-morning to say that Hope Lodge had a room for me starting Wednesday, 7/7, and had Dr. V's office called me? If not she would call them, verify the starting date, and call me back. As they hadn't called yet, that sounded the best option to me. She called me back about half an hour later with the news that I was to undergo my dry run on Wednesday, immediately followed by the first treatment, and that I was confirmed at Hope Lodge through 7/21.

I called Saint H and we hustled to make arrangements for furry childcare, and all the usual "leaving-town-for-3-days-with-less-than-24-hours'-notice" tasks... It's wonderful to have a known address for the duration, as we can leave things in place when we head back home on weekends to replenish clothing.

I haven't figured out whether I'm going to see near-immediate benefit, but I do know that my back pain has diminished somewhat. I'll take that, I think.

We received word that the second founding member of the Renal Cell Networking Group, John Gillivan, had passed away this morning. His brain mets came back and he lasted only a few days in ICU at the James. John and his caregiver, wife Susan, were instrumental in my being here still. When I first joined the group, I was trying to figure out what next course of action should be (remember this was in 2004). I had almost settled on starting with a clinical trial when they pointed out that one had to try and fail at high dose IL-2 in order to be eligible for most clinical trials. If one chose to start with some other therapy, one would be disqualified for most drug trials and other medications. Luckily I listened to them, suffered through high-dose IL-2, and then when that failed me I moved onto trials and other drugs; "the rest is history" as they say. I'd have missed buying the farm, building the house, refocusing my life on what's important. This process of postponing a bad outcome has taught me what's precious. I'd not have missed these lessons for the world.

Up In The Air

We're still up in the air about dates for the moment. We went up last Wednesday as planned for the simulation, and at the same time we hoped to get more details about schdule. Nothing, alas, seems to be so difficult as to get details at the moment - lots of things need to coalesce for all this to work out. I only hope that we find out more this Wednesday when we go in for the dry run.

I did break down and call the on-call oncologist at Cleveland Clinic yesterday afternoon; I'd been dealing with increasing amounts of pain, and the pain levels finally got beyond what I could tolerate. Turns out that I was, in fact, undermedicating myself - I wasn't taking enough of my pain killer, so I'm on a strict regimen to schedule the doses every 4 hours, 6 times a day. I think I can do it, as I've felt much better since starting this.

Today I went off to the county fair to pick up my entries. I received 3 first place rankings (the stole, the hat, and the baby sweater), plus 2 second place rankings (the socks and the vest). On the whole I was pleased, and the vest lost to friend M's Fair Isle vest ("Grant Street", Alice Starmore). It's a beautiful, beautiful pattern, breathtakingly well-executed, and she won Best of Class and Best of Show. Can't complain too much to finishing behind her!

Saint H and our friend R spent the day baling hay; I believe he said we have 120 400-lb. bales in the field, and we may get a few more scraped up from the remains. R has dairy cattle as does one of his friends, and they may be buying all this hay from us (woo-hoo!!) If we get a decent second cutting this year, we can put it up in square bales and keep it for our own animals. I wasn't sure we were going to accomplish a cutting at all; like so many others here, we've been afflicted by the weather; it's been too wet to get into the fields. Right now, even though it's above 90, it's not so terribly humid and it's not supposed to rain for at least a week. Great for hay, if nothing else.

Next Step (Date Unknown)

Today Saint H and I met with Dr. V of the radiation oncology team at Cleveland Clinic. He reviewed my scans and my medical history and has agreed to take me on as a patient, whoopee! He felt that I'm in good physical condition and "blooming" health, except for that little cancer problem, and that I'm a very good candidate for this treatment.

We're waiting into early next week to find out what kind of schedule we're looking at, but he wants to begin sometime next week. As he described the procedure, it's something like what was done for gamma knife, but we're looking for "gentle destruction" (his term) because lung tissue is so much more delicate than brain tissue. There are the usual times set up for mapping the lesion, and plotting the radiation plan, then I'll be scheduled for 10 sessions of radiation, 15 minutes each. In fact, I'll be getting radiation for as long as the gamma knife procedure took, just cautiously administered over 10 business days! There will be somewhat less concern over the precision aiming, though we'll be locking onto the target with what are known as "tattoos" resembling small dark moles on my chest. I suggested to him the concept of registration marks for printers, and he agreed with that. Potential side effects? I may develop some "sunburn" or darkening of the skin surface, and I may develop pneumonitis, irritation of the lung tissue resulting in coughing and shortness of breath. I don't cough now, and have only had shortness of breath when I exert myself on very, very warm, humid days, so perhaps it will take longer to see that develop. And, because the esophagus is so close to the radiation site for me, I may have some inflammation of the esophagus before this is over. Fortunately these are all controllable. This goes beyond palliative treatment; he expects to see the lesion completely destroyed, which will leave it to me and Dr. G to focus on treating the remaining lung lesions.

For the moment we don't know the schedule, because Dr. V has to coordinate several schedules - his own and the oncology team's, Dr. G's, and that of the American Cancer Society's Hope Lodge, Cleveland. Hope Lodge provides housing at no charge for cancer patients and their families when on extended stays in a distant city for treatment; with a 2-1/2 hour drive one way from home to Cleveland Clinic, I certainly qualify for the service. As you can see in this virtual tour, the facility is lovely.

The "no charge" option is becoming vital, though I can for the moment afford the Cleveland Clinic rate at the Doubletree Downtown, Lakeside ($89.00/night for rooms that normally rent for as much as $299.00/night). However, doing restaurant meals on top of about $1000 in hotel costs is getting outside my comfort zone financially. If I can take advantage of the Hope Lodge program and test out the lovely kitchens, I'll be pretty happy. We picked up a flyer on the surrounding area; lots to do to keep myself busy outside of my "15-minute day". Friend M can pursue some grant research that she needs to do, friend B has offered to be my keeper too, so Saint H won't have to be there the whole time.

The sooner I know the schedule and how it affects when I can start on Afinitor (and from that, what my schedule will be with Dr. G), the better I'll feel. Guess I'll start packing books and knitting now so I can be ready to go at a moment's notice. Some things are much more important than clothes ...

Song Virus

My friend and sister C2, who sings in a folk trio, uses this term to describe the tune that implants itself into your head and your routine. Generally it's something obnoxious or inappropriate, and you just can't rid yourself of it until it's supplanted by something equally obnoxious or inappropriate ...

For the past several days I've been attacked by Disney's "It's a Small World", thanks to my friend A who sent me a jovial message on Monday. Over the weekend she visited with friends and family in her hometown and was chatting with her niece and nephew's maternal aunt. I don't know how the conversation turned to this, but the aunt is a nurse at Cleveland Clinic. It turns out she knows me and St. H rather well - she's none other than my sweet nurse Vicki whom we met on the last clinical trial. Yes, it is a small world. I just wish that song would go away!

Yesterday was scanning day at Cleveland Clinic, my first since starting Votrient in April. I'm officially off Votrient, as it did nothing to slow down my lung lesion and, indeed, I've developed seven tiny lesions in other areas of the lungs -- both lungs, unfortunately. Dr. G is working on options and schedules - looks like we'll check into radiation therapy on the right lung lesion, primarily palliative as I'm starting to have quite a bit of pain from it pressing against the shoulder blade but possibly as a debulking measure if they think it's possible. And sometime soon I'll be starting on Afinitor, the oral mTor-inhibitor. Nothing like pushing forward regardless ... I'll post more as soon as I know more.

Nothing In My Brain

"I want to show you some beautiful pictures." Those were the first words we heard from Dr. LA in Cleveland yesterday; she suited actions to words and pulled up before-and-after MRI shots from the gamma knife procedure.

As of yesterday's MRI results, there is no swelling remaining in the brain, and all of the targeted lesions were eradicated. There are no new growths present. The procedure was completely successful. It was fascinating to see the images side-by-side. The largest lesion left a hole, literally, in my brain. Thank goodness we have more brain matter than we need ... Dr. LA is thrilled with the results, as are we.

We met also with nurse Shari, who reviewed my labs. Nothing abnormal showed up; my hemoglobin counts continue to hover just below normal, and we'll continue to monitor that as well as some of the other "normally abnormal" counts that I've accumulated over the years. We'll also continue to monitor my liver activity, as anecdotal reports have several Votrient users suddenly developing liver dysfunction. I'll be seeing Dr. LA every three months, and probably will see Dr. G about every 8 weeks, so we'll still be burning up the roads between here and Cleveland for the foreseeable future.

On the homefront: last night Cola suddenly howled, sprang into the air, and raced around the living room, disappearing down the basement steps before I could stop her. She stayed huddled in the basement all night and most of the day today. This was a mystery until I found the yellow jacket in my bathroom. My guess is that she (the Mighty Huntress) found the dratted thing, attacked it as she would any other insect, and was stung. I swatted it with a towel 3 times (each time it started stinging the towel), and finally crushed it with a bottle. I remember stepping on one of those as a kid; it took pliers to pry it away from my toe after I was stung. Poor little kitty!!

First Day

We went to Cleveland for appointments on Friday - benchmark scans and a general check on my health and well-being. And, because I was still dealing with edema in my lower legs and feet, I had ultrasound exams on both legs. Our results were good: scans were stable and lab results were generally in good shape, though my hemoglobin levels are down to 8.7 from 11.4 at the last set of labs. The ultrasounds were added to the mix late in the day, so we didn't have final results when we left. By the end of the day I had my first 30-day supply of Votrient with instructions to begin on Monday if all the test results were good.

I spent much of the weekend stewing about the possibilities: side effects, my body's weaknesses and strengths, warning signs, and the like. Even though I had come to a decision, that decision once made must still be lived with. Without data to fold into the equation, one's mind becomes the hamster, endlessly chasing the "what if"s through the night on the treadmill of the unknown.

I did query my friend Bruce who started on Votrient about 3 weeks ago; we've gone through Sutent and Nexavar together, with some of the same reactions to the same drugs. I was reassured to hear from him that it's gone well; I can't tell you how much that calmed my fears.

Monday I saw my primary care physician Dr. MC to reassess my current maintenance meds; we changed out one blood pressure med for another, and reconfirmed my use of a diuretic to continue fighting the edema. Then I called Dr. G's office; Nurse Shari and I traded phone calls for a while until we finally talked together in late afternoon. The ultrasounds showed no blood clots so I was given the go-ahead to start on Votrient today.

I took a full dose, 800 mg, at 10:30 this morning. The day passed relatively normally (a meeting, lunch, and a lecture tonight) and I'm feeling relieved. So far so good; no immediate negative response, no big red flags. I'll be watching things closely, monitoring my blood pressure and looking for signs of trouble. Keeping fingers crossed - would love to have a med without side effects! What a concept!

Surgery in Street Clothes

Yesterday I sent out messages to my "sporadic updates" lists to let everyone know how the procedure had come out, and late afternoon I spoke with my dear sister J. I told her that, on the whole, everyone had complied with my request not to call; I had decided to take several days apart to make certain that I had no headaches, that I didn't overtax myself, that I could adjust to new medication schedules, and get my head wrapped around the whole process, before I settled into visits and talks. She commented, "This all seems to science-fiction! When we were kids, could you have imagined anything like this happening?" And I had to acknowledge, no, I couldn't.

The film Fantastic Voyage comes to mind somehow, with little miniaturized scientists jetting through my head, zapping tissue amidst all types of improbable barriers and dangers. That just doesn't square somehow with being comfortably placed on a table in street clothes, and having someone pop one of my favorite CDs by the Gipsy Kings into the stereo system.

We have friends here who have 25 years of experience dealing with her brain tumors and subsequent medications, surgeries, radiations, and life changes. She's maintained a loving relationship with her friends and her family; she's upbeat, and accepts the limitations that have come with her condition gracefully and inspirationally. Science fiction can't begin to describe how things have changed over the years with treatment options. Even more, science fiction doesn't approach the amazing abilities of the human body and mind to cope.

I'm back to knitting, working my way through small projects. It's a fabulous relief to be able to comprehend my "alternate universe" of stick and string without panic.

Wheel of Fortune

Last week's scheduled evaluation led to a pass to the next round of the clinical trial, so I made the next block of hotel reservations, and prepared to return to Cleveland this Monday past for the first treatment of Round 8. My friend and sister M volunteered to drive so we could catch up after a couple of weeks without time together. Last Friday I settled down on the couch with Marmaduke and my knitting to watch the Opening Ceremony of the Olympics, and realized to my horror that I couldn't comprehend a simple pattern and translate it into knitting stitches.

Then I tried to make some written notes on a photocopy so I could reduce my planned project packet to a more manageable size and leave a book behind. I couldn't write in a straight line and I couldn't control my handwriting. By this time I was thoroughly spooked, and sent an email to Dr. G to notify him of my concerns. As I was heading up anyway, we scheduled an additional appointment for an MRI of the brain, something that we hadn't done for some time.

Late Monday afternoon we completed the scan and returned to Dr. G's office for the results.

I am now off the clinical trial, as we discovered several lesions on the brain with attendant swelling that was causing my cognitive problems. I was immediately admitted to the Cleveland Clinic Hospital to start steroid therapy to reduce the edema in the brain, and for consultations with neurology and radiation oncology specialists on Tuesday. M's husband the valiant Mr. C battled a raging snowstorm to bring Saint H and sister C2 to Cleveland. We traded family members, and Saint H and C2 settled in at the hotel for the consultation results.

Tuesday I spoke with neurosurgeon Dr. LA and radiation oncologist Dr. Sam C, and we charted our next move: I'm scheduled tomorrow, Thursday, for a gamma knife procedure, an all-day funfest starting at 7:30 a.m. and ending who knows when?

I'm comforted to know that Cleveland Clinic has been doing this since 1997, and Dr. LA has done some 300 procedures and works closely with RCC patients. I'm surprised and somewhat startled that this is done on an outpatient basis - I stayed in the hospital on Dr. G's orders to avoid having to go home and return in a snowstorm and to get started on therapy as quickly as possible. I was discharged, moved into the hotel, and have enjoyed the time intervening with my dearest boy and my dearest friends.

I miss my cats, I miss my house, I miss sleeping in my own bed. I expect I won't get home until Friday due to the observation period required after the procedure.

I don't know what comes next. I consider myself lucky - we were able to take quick action and I'm in excellent hands. I know several folks who have gone through the procedure and done just fine, and I'm expecting to do just fine myself. I'm not looking forward to the expected headaches and the imposed immobility for however long the procedure takes.

I know the chances of survival with good results from this procedure are impressive; as I told Dr. LA, "I like your odds for me better than mine."

So I hope soon to be able to tell you what this turn of the wheel involves. Spare a good thought for me.

Going Forward

At long last we've gotten through 2009, a fairly miserable year for so many people that I hope we never see its equal. On the whole I feel I got through it with few scrapes, and I know I'm lucky.

We were in Cleveland for evaluations on December 30, and I'm stable still, so we are moving forward with Cycle 7 of the clinical trial. The worst side effect continues to be fatigue - I'm tempted to say "the only side effect" but I don't know that for certain. I do know that this drug seems to be tolerated well by participants, from the scanty reports I've heard. The company was able to get the full complement of trial patients for the study. That's a pretty good mark on its own; many trials run into trouble amassing the target study group, whether that's due to stringent prerequisites for participation, or adverse reactions leading to patient dropouts.

During December I started having pain between my right scapula and my spine - nothing drastic, but a fairly constant dull ache. The pain felt very much like pressure on a nerve, similar to what I'd experienced in 2004 while recovering from my liver resection. At that time I developed an abscess that extended from my liver to mid-back behind the right lung, and I was in constant pain from it. Only after we discovered and drained the abscess did I get relief.

For this round I jokingly suggested that it might be my cooking habits - maybe I was straining a muscle while chopping vegetables? I asked Dr. G to review my November C/T scans with me prior to my second treatment in the cycle; even though I'd joked about my cooking habits I had in fact altered my kitchen setup, but there was no change in the pain or its location. We moved through frame by frame and discovered that the tumor in my right lung is now pressing against one of my ribs, and that appears to be the cause of my discomfort.

So what does that mean? I feel better knowing what the problem is, and we're in no hurry to take me off the trial - Dr. G still refers to it as my "body vacation" from other treatments. We may reassess my pain medication, though for now my regular routine is enough to keep it at bay. We may look more closely down the road at some type of Gamma knife or Novalis procedure.

We continue to have options, even beyond available therapies. I'm so very glad to have such good teams to work with.

Keeping On Keeping On

Sorry for dearth of postings. Things are settled into a routine for now, with many wishes that this will continue. I had my evaluation tests for Round 5 on November 20, and was passed on to participate in Round 6; I'm now two treatments into Round 6, and will finish up the year with evaluations on December 30.

So far the results continue as before: the liver lesions continue to shrink, and the lesion in my right lung continues to grow. In April, when I signed on for the clinical trial, the lung lesion stood at 2.7 cm in size. On November 20 it had reached 5.4 cm in size. Dr. G delivered this news with a wry smile and a comment, "I can see that you are going to keep presenting us with challenges. What am I to do with you, with only one site showing activity?"

What he had to say next was very unexpected: "I think we might want to look into radio frequency ablation. You brought it up some time ago when we were faced with liver lesions and, while I'm not a great believer in RFA, I think we could make a good case for it for you. It's good for single site tumors, it works well with the lung, and it's a good choice for those who might not do well under standard surgical procedures. We've already discussed that; I think you present too many potential morbidities to be a good surgical candidate. So, they may just tell me I'm crazy, and maybe I am, but we might as well ask. Who knows, there might be a chance for you to go several additional years without further incidents, if we were able to pursue it."

To this point, as I've been undergoing successive drug therapies, the decision has been between Dr. G, Saint H, and me. I don't know what such pursuit entails; I know from some of my fellow Cleveland Clinic patients that their cases have undergone an internal review when other treatments are being considered. I don't know what timeline we're looking at - do we wait to see how long I can stay on the clinical trial before we even start asking? Do we pursue other drug treatments before surgery is considered?

Until I hear more, I will just continue with the clinical trial and hope that we keep on getting reasonable results.

Cycling On

Wednesday found us at the Cleveland Clinic for yet another evaluation set. As the appointments didn't start until 11:00 a.m., we chose to drive up early in the morning rather than staying the night before in Cleveland.

This time, to see if there were anything behind my reported "fullness" in my neck and slight difficulty in swallowing, I had two C/T scans scheduled, which seemed to make the day stretch even longer than usual. We bounced around from spot to spot (Saint H got in a lot of good step totals on the pedometer they're using at work for a wellness challenge), managed to get in early for every appointment, and topped off the day with a short nap while waiting for Dr. G to arrive with results.

The results were worth waiting for, believe me. First, the C/T scan of the neck revealed no growths or suspicious tissue, only the calcifications in my salivary glands that we already knew about. We're pretty much agreed that the problem is tied to dry mouth. Amongst the easy remedies: have water available at meals for small sips to help lubricate my throat, take small bites, and chew well to make certain that there's nothing left to "bulk up" on the way down. Well, these reflect good manners and general nutritional wisdom, so I'm happily able to comply with orders.

Second, all my labs are consistent. My hemoglobin levels are still low but have only just begun showing a drop below 10 (9.8 this time), so we'll be watching that closely every two weeks. All the other results are high or low as expected for someone with RCC, one kidney, and liver damage. Should I need to return to Aranesp injections, that could easily be accommodated with my treatment schedule. I've discussed potential problems with Aranesp here before so I won't rehash, but Dr. G decided (and Dr. SC concurred) that I would not likely fall under insurance strictures as both Cleveland Clinic and OSU comply with the strict application guidelines.

Third, and most gratifying, the scan results show net tumor growth of zero percent from the May benchmark. The lesion in my right lung is still growing, very slowly, but for the moment it's completely offset by continued reduction of lesions in my liver.

We always finish the appointment with a discussion of next steps, and Wednesday was no exception: I'll continue on the clinical trial, we're rank-ordering further treatment options, and we'll probably never do surgery again. Dr. G's broader assessment of surgery expanded this time from the short "probably not" of my last query. Though it would be nice to be able to excise the one active lesion and be so-called "disease free" for a while, he described the surgical process more fully. Basically, we'd be facing a lobectomy, with removal of at least the upper right lobe; lesion size and location are too much for a simple "wedge" excision. The surgery would involve a full horizontal abdominal opening, possibly a chest cracking, and way too much internal rearranging to suit my taste. In Dr. G's words, "For you, this would be a morbid process." Put it that way and my natural disinclination to surgery is increased immeasurably! It took eight months to fully recover from my liver resection, and I swore I'd never go through that again. Thank goodness my doctor agrees with me!

We left in the height of rush hour and got home at 9:00 p.m., with a stop for dinner along the way. We've decided the one-day trips with full appointment load are way too taxing to undertake again. Whoopee, more hotel points, I guess.

What Have We Got But Time?

Monday's treatment session seemed to be following its usual path - checking in for labs, moving on to appointments with the medical powers-that-be, culminating in my Benadryl-induced nap. There was a jarring interruption to this routine, however.

As trial nurse Lisa mentioned in our appointment last week, "Chemo time is like gold here - a scarce resource. I want to get your schedule set at least six weeks in advance so we have the best chance to retain what we've got established." Sure, there are times I feel like we're cutting it a bit fine, but on the whole it's all manageable and works well for patient and personnel alike.

What with one thing and another our arrival in Pod 1 for treatment was delayed by about 40 minutes, and the usual wait ensued for my custom-blended infusion to come from Pharmacy. I was settled in with my knitting and Saint H had something to read. Suddenly the woman in the next bed began shouting for the nurses. "I was scheduled to get in here at 9:30 and didn't get brought back until 9:45. I've been waiting an hour. I do not have time to wait around like this. You get this thing out of me, NOW!" She continued to rant at the nurses with almost hysterical fervor. She refused to be calmed and, at her insistence, her IV was removed and she stormed out.

I think we were all rather taken aback. I certainly don't understand the motivation for her outburst - was it a first treatment? Was she frightened? Was she not adequately prepared by her oncologist about what she would be going through, and why the recommended treatment course was being pursued? Did she not absorb anything beyond the diagnosis?

Whatever the reason, I see no cause for the nurses to bear the brunt of her unhappiness. I think it's fair to say that she doesn't have the same type of relationship with her oncologist that I am fortunate to have with mine.

If I had a nickel for every minute I've spent in waiting rooms and in limbo since my diagnosis, I'd be a very rich woman now. Come to think of it, I guess I am a very rich woman - after all, I'm still here.

Kick In The Teeth

Well, crap. Last week, insurance paperwork, billings and all from the first of the year finally worked all the way through the mill and I sent off the usual $900+ check to Cleveland Clinic to settle my annual out-of-pocket requirements. Hooray, no more unknowns, just the usual copays, prescriptions and incidentals for the rest of the year.

But wait! Yesterday I went to the dentist for a regularly-scheduled cleaning, and we found yet another cracked tooth. The rear right lower molar has cracks in all four directions, plus a couple of chips, plus decay along the edge of a filling that went in about 3 years ago. That's 3 cracked teeth in the last 2 years, folks. Some of my other teeth are now developing chips on their cutting edges, too. And the remedy for a cracked tooth, of course, is another crown. Crap!!!

Vivian asked, "Do you grind your teeth?" "No, I don't think so ..." "Well, what about dry mouth from your medications?" Oh, yes, indeed - what about dry mouth?

Dr. K doesn't think that there have been any studies about the relation between dry mouth, cancer medications, and dental problems. I'm ready to believe it, though - I have always taken care of my teeth, and I'm stunned by the amount of dental work I've had to go through in the last 3 years. Saliva acts as a lubricant, and without it the teeth bang against each other - grinding without grinding, as it were.

My schedule stinks, as does my bank account; I'm going to put off getting the crown as long as I can. For now I've got a prescription toothpaste, Colgate PreviDent 5000 Dry Mouth, Biotene mouthwash samples, and strict instructions to brush and floss religiously, and chew carefully. We may look into some sort of mouthguard as well, in the meantime. And I think I'll start doing some reading up in the dental literature too. At least the toothpaste doesn't make me gag, so far.

Fifty-Seven

Yesterday was yet another birthday; another year has rolled past, adding another digit to my sum of years. (I won't speculate about whether or not I've grown in wisdom; probably not!) I have to say it's a lot better to keep adding the years! For all the lip service we pay to "accepting" that one's lifespan is unknown, I'd rather keep on than not. Anyway, here's to another year of discoveries.

Monday's visit to Cleveland Clinic involved meeting a new specialist intern who's spending time with the kidney cancer team. He went to great pains to reassure me that Dr. G is still my principal caregiver, and that he hoped I would trust him to treat me as well as any other Clinic staff member. I congratulated him on being chosen to work with the best available (in my no doubt biased opinion) and assured him that I would hold him equal to my expectations of care from Cleveland Clinic.

When Dr. G popped in a few minutes later, I asked him specifically how much growth we measured in last week's scan. Two of the liver tumors shrank slightly; the lung tumor expanded from 3.9 cm to 5.4 cm, and the total represented a 9% growth overall. So, I don't know if I'll be able to stay on the trial beyond this cycle (once I go beyond 20% they'd have to remove me). We can but wait to see. In the meantime, my vacation from side effects continues!

We've been enjoying a surprising month - no expectation of reaching a 90-degree day at all for the month, so very unusual in Ohio. This is shaping up to be perhaps the coolest July on record - right now we're about 4.5 degrees below the normal average high. We may be getting more rain (2" since Wednesday) through the end of the month; good and bad, since we'll soon have to cut hay again. Let's hope that we get a little slot of dry weather in the next couple of weeks.

"How Dry I Am"?

"We have to hydrate you for 2 hours before we can do your CT scan. Your labs showed a creatinine level of 1.38, so your glomerular filtration rate is 40, and the contrast dye will be too slow to clear from your kidney at that rate." The CT scan nurse let that sink in, and then said, "You didn't hear this from me, but next time, before your labs, drink water. I know you're not supposed to for the scan, but you're dehydrated. Your labs will come out better and we won't have to do this again."

Schedules at the Cleveland Clinic are built under the assumption that all will be well. In this case, I was thrown way out of whack, so I was 45 minutes late to my bone scan, didn't get lunch until 2:00, and didn't get to see Dr. G until 2:45. By being late to my bone scan I probably disrupted all subsequent appointments - not my fault, not the CT folks' fault, but the nuclear med techs were definitely unhappy about it. Every bone scan takes a minimum of 20 minutes and can take much longer depending on requested details and the radiologist's speed at reading them. So one wrinkle in the day's fabric begets another, and another ...

There was a bit of growth in the lung tumor but I still qualify as "stable" for the clinical trial. Hence, we go forward with it for as long as we can. Onward for the next six weeks!

An aside: I lived in Indianapolis for a number of years in the vicinity of 52nd and College. I was just up the street from the home of Frances Farmer, and around the corner from the fabulous Red Key Tavern (haunt of Kurt Vonnegut and featured in Dan Wakefield's book Going All The Way). Its neon sign depicts the first four notes of "How Dry I Am." (Yep, those sight-reading skills from grade school have come in handy through the years; thanks, Mr. S!)

Just One Of Those Days

Yesterday we went through the end-of-cycle screening tests. The all-day affair was not quite a comedy of errors, but we ran into a few oddments through the day, including an hour-and-a-half wait for the C/T scan. For some reason all C/T scans were taking place in the central facility rather than that of the Taussig Cancer Center (where one rarely has to wait more than 5 or 10 minutes).

I've had enough experience with these to wear no metal - pull-on elastic waisted pants, no jewelry, no zippers - so I don't have to strip down and wear a gown. It's a lot more comfortable and in the long run a lot quicker. While I waited for the scan, I ended up with my arms wrapped around a stranger; a woman in her early 40s, already a cervical cancer survivor, facing something unknown, possibly pancreatic cancer. She was cold, nauseated, and frightened, and I just couldn't sit there and leave her to her demons. I tried to keep her warm, and I let her talk.

I think everyone with cancer has hit the wall, the low point, whatever one wishes to call it, and we all hit it more than once over time. I've always had friends and family there to talk me through it. Can we do anything less than return the favor when needed?

Screening tests turned out well enough that I'm still in the trial. Onward and upward - back to Cleveland tomorrow for Monday's treatment.

Little Ol' Deviant Me

Well, I've been busy since the last posting. My computer is now fixed (fingers crossed that it stays that way). We've completed the first 3 treatments on the clinical trial and I've not had significant side effects to date. However, last week we ran head-on into one of the "things one signs on for" in agreeing to a clinical trial.

Every clinical trial should include a contract, of sorts, between the trial and the patient. I signed one which outlined the side effects, documented the intent of the trial, and specifically stated what responsibilities I have as a participant.

Wednesday afternoon, in the midst of terrible storms and changeable weather, I had a terrible migraine. Later in the evening I developed a fever of 101.2 degrees. I thought to consult the document I'd signed and, lo and behold, I was to call in and report to the Cleveland Clinic for further information, if I had a fever over 100.5 degrees. The oncology fellow on call directed me to go to an emergency room, so off we went to OSU ER, at about 11:30 p.m. After consulting with the Cleveland Clinic, the ER docs bundled me off to the James for admittance, where I landed about 3:30 a.m. At Cleveland Clinic's direction I was placed on an IV course of antibiotics and settled in for the results of blood cultures.

By the time I was in the James, my fever had gone, but we had to wait for 24 hours for the results to come back. I was finally released after observation and constant dosing on antibiotics on Friday afternoon. I now have 4 new antibiotics on my drug sensitivity list, woo-hoo!! Basically they could find nothing wrong with me (I'd suspected that all along, since I have a history of reacting badly to weather changes).

On Sunday I went off for a haircut and lunch with friends. Later that evening I got violently sick to my stomach; I offer no details but it was distressing and unpleasant. I had no temperature and was finally able to sleep once the vomiting was over. The patient contract said to call in if more than one episode of vomiting occurred during a day; I figured it was essentially one long episode and decided I wasn't reporting in.

On Monday morning I called in to Nurse Vicki, told her that I'd had vomiting the day before and was feeling okay but didn't really want to make the trip up that day; would that invalidate my trial participation? She said, "I'll just note this as a deviation, that you didn't come in for your appointment, and I'll see you on Friday for the screening tests."

So now, I'm a deviation from the standard protocol. I'm glad that I didn't get bounced off the trial for missing my last appointment of the cycle, and I'm glad I don't have to make the weekly trek anymore. Let's just hope that the screening tests go well on Friday so I can start treatments again next week.

Bam!

We went off to Cleveland for the second treatment yesterday. We spent less time at Club Vampire - no need to search for veins, thank you very much. The trial protocol requires only an hour's monitoring for the second and third treatments in each cycle, so the waiting time was cut by three hours.

I'd always maintained that Benadryl doesn't affect me, when warned of its drowsy factor. I now have to amend that. Benadryl in pill form hasn't affected me in the past, and may not do so in the future. However, Benadryl as an infusion is another matter altogether.

Picture yourself sitting quietly in a chair, talking with your beloved and your friendly nurse. You've got a pile of knitting on your lap and lots of free time in your near future; it's a wonderful prospect provided that you don't get sick or have a reaction to the treatment. Then someone steps up with needle in hand, says, "Here's your pre-medication dose of Benadryl," and it's injected into the line leading to your port and thence directly into your bloodstream.

Suddenly you feel not quite sick, not quite awake and not quite coherent. Your knitting is in hands that don't belong to your body; your loved one is floating away, and your nurse is asking you questions that your brain can't process. For my part, I feel like the inside of my mouth has suddenly been sprayed with glue. I've called into a local radio talk show a couple of times, and find the slight delay between speaking and broadcast to be very disconcerting. Being on Benadryl is a lot like that!

I have to say I've fallen asleep very quickly both times, and suspect that this will become the new normal routine. Likewise, it seems to take a long time for the effects to wear off, but sometime around mid-afternoon I've managed to start feeling normal again, both times. I hope that will also continue to be the norm.

Since we got out early, we managed to squeeze in a visit to Cleveland's fabulous West Side Market. Eleven dollars bought us almost more produce than we could stagger away with; and we didn't even make it all the way around the market. I see more trips there in the future!

My laptop is being evaluated for repair. I hope to have it back soon; friend M has given me carte blanche to use her desktop machine whenever I need to. So email is backing up and I'm not looking forward to plowing through it all when the time comes ...