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My Story: Quality of Life (Updated)


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Introduction: The most important thing to know about me is that I have lived a full and rewarding life; thus when I was given my diagnosis of lung cancer back in January of '07, I couldn't exactly whine about it (particularly given that my younger sister, Glenda, died in a car accident at age 20 without ever having experienced marriage, children, a career, hobbies or travel). This does not mean that I "gave up." Instead, I decided that every day I had left--no matter how few or how many--would be of the highest possible quality... which turned out to be a very smart decision given that studies show that the higher our Quality of Life, the longer our Survival Rate (See Lungevity's Healthy Living Forum at http://lungevity.org/l_community/viewforum.php?f=67).

I do apologize for the fact that "My Story: Quality of Life" has grown to the size of a book, but it has become my chronicle (and memory aid); and perhaps someday reading it--and my recently added "Waxing Philosophical" addendum below--will be of as much help to others as writing it has been to me.

Background: I was born and raised on a farm in rural Fresno County, California where I rode horses, cared for livestock, drove tractor, belonged to 4-H Club, etc. (typical farm girl's life). I graduated from high school in 1963 and on to college (sporadically over a number of years), during which time a beautiful daughter, Chrissy, was born to me (the love of my life!). Eventually, I became a welfare worker and later a union representative--both satisfying careers that allowed me to help improve the lives and livelihoods of others. In the mid-70s, I was transferred to Southern California, moving to San Pedro, where I learned to sail and ultimately became a racing skipper (Cal-20s). I have always loved to read (fiction and non-fiction, including historical, political and genealogical) as well as ski and travel (including trips to Ireland, France, Italy, Spaiin, Hawaii, Canada, Mexico, the East Coast, South, etc., with various best friends, including my mother, daughter and cousins). In the early 90s, I retired and moved to Colorado where my daughter, Chris, and two grandchildren, Amanda and James, live.

The Big C: In January '07, only days after snowboarding with my grandchildren at Eldora, I was diagnosed with non-small cell lung cancer (NSCLC), Stage IIIB squamous cell carincoma, with a five cm. tumor (poorly differentiated Grade 3) in my lower right lobe, metastasized to my right hilar and mediastinum sub-carina lymph nodes, at which time I researched lung cancer (belatedly), quit smoking (definitely belatedly) and opted (speedily) for the most aggressive treatment--concurrent chemo (cisplatin and etoposide, followed by taxotere aka docetaxel) and conformational 3-D radiation therapy--in an effort to buy time--so long as that time provided Quality of Life.

My mother flew in from Northern California the week after my CXR (chest x-ray) and we stayed at my daughter's during the period I was being tested (bronchoscopy, CT and PET scans, etc.), a particularly poignant period for all (since statistically, even though she was then 82 years old, my mother was probably about to survive her sole remaining child).

In February, preparatory to the start of my chemoradiation therapy, my grandson came over and stuffed me to the gills (I gained 9 lbs., having been told that if I lost 10% body weight, treatment would have to be stopped), and at the end of the weekend, he, his sister, my daughter and I also went on a "hat shopping spree." I began my treatment on Feb 11, but unfortunately, by the end of month I was hospitalized (intensive care) due to neutropenia (treated with Neupogen).

In March, chemoradiation started again although I was diagnosed mid-month with anemia, and again hospitalized (intensive care, corrected with Procrit). During this six weeks, excepting for a week my mother stayed with me and a long weekend my close friend and Northern Colorado cousin, Randy, stayed with me, my daughter lived with me and took care of me full time.

On March 26, I was hospitalized (intensive care again) after suffering a pulmonary embolism in lower lobe of "good" lung (15% of all cancer patients are afflicted by blood clots). Oxygen was prescribed full time (1 liter) plus I began daily injections of Lovenox (blood thinner). Radiation was halted with only 30 of 33 sessions completed. I would never have made it to this point if not for my daughter's great care of me (although in retrospect, I know that we should have "spread" the caregiving out over more people--it was way too much for just one individual).

Another close cousin, Nonie, had flown in from Southern Cal to stay with me, but I was in the hospital all but the last day of her stay. She spent most of the week at the hospital though (trying to sleep at night in a very uncomfortable recliner) and we still got in a great visit (including a special day with our cousin, Randy--more great Quality of Life!).

I was able to manage on my own (the "new normal") the rest of April, but in May I became one of the 15% of all lung cancer patients undergoing radiation therapy who develop radiation pneumonitis (hospitalized, corrected by Prednisone). I had completed my cisplatin/etoposide sessions, but only one of three taxotere (docetaxel) sessions.

My oncologist prescribed palliative care* for me and I began a new nutrition-herbs-vitamin program along with oxygenated water.

*Palliative care, for those with chronic illness and/or life expectancy of less than one year, is home-based care by a team that includes a palliative care physician, oncology pharmacist, RN, Social Worker, Certified Nursing Assistant and Spiritual Counselor. For the terminally ill this is one step before hospice care. The education I received from my Pal Care team (together with great care) was major in its help to me in setting nmeaningful and rewarding goals for the remainder of my life.

In June, yet another best friend-cousin, Gene, flew in for a week from Central California that turned out to be another special Quality of Life experience. That same week, my 6-week post-treatment CT scan showed that my 5 cm. tumor had reduced in size to just under 2 cm. with no further growth in lymph nodes (and some also reduced in size).

This same month my Prednisone side effects began kicking in (weight gain resulting in "moon face" and "barrel belly" plus excessive body hair growth; i.e., I began getting face waxes for the first time in my life).

By July, however, I was able to drive my grandchildfen to California for a "memory trip"--an adventure I embarked upon despite doctors' concerns (Quality of Life definitely won out!) that included a stop along the way to visit with yet another best friend-first cousin, Debbie, who lives in St. George, Utah. We spent that night on the strip in Las Vegas where I was able to reconnect with another long-time best friend, DD (who has been battling a particularly aggressive breast cancer for years).

In California, because I was at sea level, I was able to go without oxygen, an incredibly freeing sensation. We all three had a great time sailing and staying aboard Robin and Gayle's Cal 29 at Cabrillo Beach Yacht club in San Pedro, where I was also feted by a large group of wonderful friends at a party that weekend). During the course of the two weeks we were on the road--in addition to time spent at the beaches--Amanda was given surfboarding lessons by my "surfer cop" cousin, Kurt, and we also visited Disneyland, California Adventure, the San Diego Zoo, etc.).

We were all treated like royalty by Nonie (whose mastery of Disneyland is beyond description); and were also able to spend time with even more cousins (and their dear babies). Unfortunately, I began to weaken toward the end of the trip (probably from overdoing, possibly from a too-large decrease in Prednisone dosage), forcing us to cancel Sea World in order to give me a day of rest before we began our journey home (I had to increase my Prednisone again and low oxygen caused my driving to become so erratic that James had to poke me awake twice one day before I realized how bad I was and pulled over early for the night--turning the two-day trip into a three day trip).

By late July--seven months following my diagnosis--I had convinced 14 smokers to stop smoking, and since one of every two smokers is killed by his/her cigarettes, may have saved up to seven lives in just seven months!* If I have done nothing else in my life (which has been very rewarding for the most part), this alone will have made it worth while.

* Two of the fourteen later started smoking again, including--to my great sorrow--my daughter (who already has a 2.5x greater chance of getting cancer due to my diagnosis, as I also had a 2.5x greater chance due to my paternal grandmother, uncle and aunt also all having had cancer).

In early August, the Prednisone caused insomnia so bad that I went sleepless for five days, became sleep-deprived and suffered a psychotic episode (I'll take lung cancer to that any day!). In mid-August, two teeth crumbled (due to chemo and/or Prednisone) and I had to temporarily stop Lovenox injections so roots could be extracted (yech!).

Later in August, scans and xrays for severe hip pain showed not bone cancer, but a stress fracture of my sacroiliac due to severe osteoporosis induced by Prednisone. Hip and sacrum fractures can't be cast so the next two weeks were spent staying off my feet so the bone could heal.

I remained unstoppable, however, and in mid-September a second "memory trip" took me back to San Pedro, where I again doffed my oxygen to join a "gaggle" of 12 female friends and relatives (including my mother and daughter) on a five-day cruise to San Diego, Catalina Island and Ensenada, Mexico (in that order) --again against doctors' recommendations in favor of Quality of Life.

My 89-year old aunt Lena died in Central California the week before the cruise, causing my daughter and I to leave for there early and giving me the chance to see most of my paternal cousins and their children before heading south to see my cousins and their children on the distaff side of the family (as you can tell, I am blessed with a large, loving extended family).

On our way back home, we were able to visit with my first cousin, Mark, and then spent the night in St. George with his sister, Debbie. By the time I got home, in late September, my oxygen needs had increased again (from one liter to four), rendering me essentially housebound, and I moved from my house (sold) to a condo renovated with handicapped accessibility (downstairs bedroom with deck, 3/4 bath with hand-held shower and shower bench, ramp to parking area/sidewalk, hot tub, and carpeted floors converted to hardwood, etc.). This move would never have taken place without the help of my daughter and good friends Sally and Brock, all of whom pitched in and turned what could have been a major trauma into a celebration.

That same week my 93-year old father finally died--without knowing I was dying because he was (1) blind from age-related macular degeneration (something I won't have to worry about getting any more!) and (2) suffering from severe dementia (before days' end after each of my visits to him in nursing home, he wouldn't remember I'd even been there). In fact, his death was a relief: He had no quality of life, he couldn't remember my younger half-sister, Cathy, at all and if I had predeceased him, he would have had no one left that he remembered. As was the case with my aunt, at his service I also got to see more relatives, including cousin Cindy from Albuquerque and her children, Zach and Thalia, and my baby sister, Cathy, who flew in from Hawaii (plus my maternal aunt Barbara and her son, Randy, who live in Northern Colorado).

I had delayed my three month checkup until my return from the cruise (Quality of Life wins again!) and on October 1, my medical oncologist advised me that, for reasons unknown (and mine is not to question why), my lymph nodes had shrunk further (based on comparison to an August 3, 2007 CT scan--which was 3 months after my treatment stopped!). On the flip side, an increase in lung scarring has hidden the remains of original tumor (I later learned the scarring means that radiation pneumonitis was "converting" to radiation fibrosis--in only 5 months rather than the more "normal" one year). The next day my pulmonologist advised me that my chest x-ray was much improved in re radiation pneumonitis, but failed to advise me (in direct speak) that this and increased supplemental oxygen needs were result of above-noted radiation fibrosis.

On October 1, I also began experiencing left hip pain, which was not identified as a new sacral stress fracture until the 31st, at which time I began another two week regime of staying off my feet so the bone could heal. I also began a regime of PT-supervised warm water therapy exercises (in my new hot tub) since I was weakening by the day--both muscles and cardiovascular.

My hair is now almost two inches long and very curly--however it grew back in gray! As you can see by my February 16, 2007 picture above, I was Born to Be a Redhead so in mid-October, I "corrected" my hair color. My cousin Nonie's daughter, Kristi, has cut her beautiful long hair and given it to me for a weave. All I need is for my own hair to grow another two inches and I will be a long-haired redhead again!

In October, I also checked with the local chapter of the American Cancer Society re a lung cancer support group--only to learn that there is no such thing. There was, however, a general weekly cancer support group which I signed up for, although I did ask ACS if a lung cancer support group could be formed (their cancer resource navigator is looking into it).

In early November, my supplemental oxygen needs jumped again--from 3 liters to 4-5 liters. My pulmonologist gave me breathing exercises and an albuterol inhaler w/spacer, but I am now severely immobilized due to not being able to use pulse oxygen anymore (not enough liters) and not being able to stay away from home more than a few hours without running out of portable oxygen in cylinder (which I can't carry/haul due to osteoporosis so all transport now requires an assist).

In mid-November, I got an electric "scooter" to aid in both staying off weight-bearing bones and also reducing oxygen needs (I can now "wheel" down to the local grocery, pharmacy, outdoor mall and farmer's market--or at least I can on days when there's no snow or ice on the ground). I have also begun getting thrice weekly acupuncture treatments for insomnia and lung conditions (my first night after acupuncture I slept through the night for the first time in months!).

I had never lost the weight I had gained deliberately prior to the start of my chemoradiation treatments (from 112 lbs. to 119 lbs.), but since going on Prednisone back in May, I had gained even more and by late October, I was up to 136 lbs. (16 more lbs. than I weighed when 9 mos. pregnant!) This is 20% overweight and is obesity (especially when one is only five feet tall--except that I have lost a another half inch this year due to osteoporosis---I'm now only 4' 11-1/2"!).

In the belief that this extra weight is harmful both to weight-bearing bones and a partial cause of my increased supplemental oxygen needs (not to mention an extra load on my still bravely-pumping heart), I have gone on a diet--only 5 lbs. down so far, but at least I'm not still gaining!

By November 19, as a result (in my opinion) of diet and exercise, my left sacral ala fracture was on the mend (almost no pain left) and my supplemental oxygen back down to 2-3 liters. If I keep this up, I may even be able to start driving again (especially if I sell my low-slung stick shift sports car).

On November 26, in anticipation of being able to drive again soon, I bought a used (2003) minivan with automatic transmission and power seat, side doors and hatch (I will be able to carry my walker plus liquid oxygen tank in back for refills of my pulse oxygen). I spent Thanksgiving alone as my daughter came down with a cold and couldn't be around me.

On December 5, before I could begin driving again, I suffered my third stress fracture--this time the right sacrum again, followed by another two weeks' bed rest. The good news is that a week later, I discovered that the highly probable reason for these stress fractures is "sitting" (as versus standing, leaning, lifting, carrying, walking, etc.) as on December 5, I had sat in hard bottomed chairs at the Rocky Mountain Cancer Center (Tebo Pavillion) for a total of 4+ hours during the course of the day (two 2-hour sessions). A "pressure distribution" (memory foam) cushion has been ordered for me and in the meantime, I have a memory foam bed pillow bought in the bedding department of my local department store that is already helping greatly.

In mid-December, after I reported both excessive thirst and a chest rash, I was tested and dx'd "pre-diabetic," and advised that this is yet another side effect of the "wonder" drug, Prednisone--this despite the fact that I'd finally managed to taper down the prednisone to 20 mg. (by decreasing the "tapering" from 10 mg. to 5 mg. increments).

The week before Christmas my mother flew in from California for a brief visit, during which we were joined by her sister Barbara, cousin Randy and his family, my daughter and Brock, James and Amanda. On December 20, the day before my mother flew home, I had my quarterly CT scan. The following Tuesday, Christmas day, was spent with my grandchildren and other friends and family members (except my daughter who got snowed in down in Denver, but she came over the next day for a "mini-Christmas").

On Thursday, December 27, I finally received the results of the December 20 CT scan, which showed that both my lung tumor and lymph nodes are growing again (whee!), and that new lymph nodes have been detected outside my chest cavity (in my neck) are now involved, but the good news (just call me Pollyanna!) is that I continue to be relatively pain- and fatigue-free.

A PET scan on January 4, 2008 confirmed that the original tumor, which had shrunk to under 2 cm. was now up to 3 cm. (from its original 5 cm.), that some cancerous lymph nodes have grown while others have shrunk, but that newly identified cancerous lymph nodes were now in my neck adjacent to my windpipe.

I had been scheduled to start Tarceva 150 mg. on December 31, but Quality of Life factors (a long-planned visit by Southern California friends Lil and Norma and cousin Nonie) caused me to delay the start until their departure on January 21 of '08. In the meantime, my supplemental oxygen needs have been decreasing, and I'm now down to two liters walk around and one liter sitting/lying down, and I am able again to use portable pulse oxygen instead of cylinders.

During the latter half of January, my supplemental oxygen needs dropped to one liter "walk around" and ZERO when sitting/lying down (i.e., no oxygen upon retiring for the night. YES!!!); and on January 29, eight days after beginning Tarceva, I developed a rash (Hurrah! Those who develop rash are more likely to benefit from Tarceva!).

On February 4, I discovered that Prednisone had struck again; i.e., I now have a cataract developing in my left eye. The good news is (1) it should be several years before surgery is needed; and (2) I am now down to 5 mg. Prednisone (and able to go off diabetes meds plus moon face and barrel belly are shrinking! YES!)

I have been attending the local general cancer support group since last October, and it has been of tremendous help in many ways, most particularly in being able to spend time and share experiences with other cancer patients/survivors, but in mid-February I was advised that the long-awaited local weekly lung cancer support group has been approved and will commence February 28 (I plan to attend both each week).

Latest good news: I dropped to 2.5 mg. Prednisone daily in mid-February and have now lost a total of 10 lbs. since the first of the year (fourteen lbs. more and I'll be back to my original pre-diagnosis) weight! Not only that, but my hair continues to grow and the weave of my cousin Kristi's hair may be able to take place soon.

Unfortunately, the lung cancer support group fell apart due to a unilateral determination by a self-described "professional" facilitator that a therapy group would be more helpful to us than a support group.

Coughing began on March 7, its source unknown (lab work and x-ray show nothing); however,in addition to it possibly being a Tarceva side effect, another possible cause is my having gone to my grandson's basket ball championship dinner the night before and participatied in a karaoke song and dance! (Quality of Life wins again!)

On March 24, I had my quarterly thorax CT scan plus a brain scan. The result of the latter was clean, but the March 26 radiologist's report showed that both my tumor and pretracheal lymph nodes are continuing to grow. Primarily as a result of weakness resulting from excessive coughing, I retained a part time caregiver (CNA), Kati, who has

helped me greatly in a number of ways (including thrice weekly massages). In the meantime, I'm back up to 5 mg. Prednisone again.

I had continued thrice weekly acupuncture treatments since mid-October 2007 and on March 28, 2008, my acupuncturist (also a specialist in Oriental Medicine) gave me a supply of Rhodiola 8 (herbal tablets consisting of 8 herbs, the primary being Rhodiola) and by March 30 my cough was gone (I went from 12 Tessalon pearl capsules and 6 tsps. of codeine cough syrup daily to zero).

On April 4, I met with my oncologist who told me that despite the growth (the tumor is now up to 4 cm.), he believes the Tarceva may be of "clinical benefit;" i.e., I am not in pain, not suffering from cancer fatigue, etc. (ergo, I still have Quality of Life). As a result, he is keeping me on the Tarceva with another PET scan scheduled for the end of the month.

During April, I dropped back down to 2.5 mg. Prednisone again and am also down another four pounds--only ten pounds to go to get back to my pre-Prednisone weight! I also signed a DNR (Do Not Resuscitate) this month, primarily due to the effect that CPR would have on me given my severe osteoporosis (broken ribs and punctured lungs, adding up to chronic severe pain thereafter--no thank you!).

A PET/CT scan on April 29 showed that my original tumor was now up to 5 cm. with a SUV (standardized uptake value) increase from 9 to 13. In addition, the pre-tracheal and mediastinal lymph nodes have grown in size, number and SUV intake; and I now have newly involved right hilar lymph nodes.

The Tarceva is not working and because I am squamous cell, neither Avastin nor Nexavar are recommended, leaving Alimta as a possible third line chemo (which has only a 25% chance of slowing progression, being yet another chemo that doesn't "like" squamous cell type lung cancer); with Taxotere (docetaxel) of which I've already had one of three a year ago) or possibly Navelbine as a fourth line.

On the other hand, I still have energy and I'm still pain-free, which is a giant plus for any cancer patient. I plan to spend the next week "processing" my new condition, following which it will be time to decide how/if a balance can be struck between "buying time" and Quality of Life

During the past two weeks, my mother has been to visit and I attended my granddaughter's softball game. Life is good!

On May 12, after meeting with my oncologist, we agreed to my "trying" Alimta. How I react to it (Quality of Life) and how it works on me will determine whether I will continue treatments. He is insistent that I stop supplemental vitamins, minerals, herbs during treatment. I caved in, albeit ungraciously.

On a more positive note, during this past week I have worked on my new gardens (potted) on my decks here at the new place (if only it would quit snowing, the gardening would be a lot easier!).

I started Alimta on May 14, and immediately following the first infusion had an acupuncture treatment. The next day I made it to MY grandson's band concert and the day after to my granddaughter's softball game! (Quality of Life continues to win out!) So far no side effects, but my oncology nurse said it might be as many as four days before symptoms showed.

I thought I'd gotten off scot free when I went to bed Sunday May 18, but woke at 2 am the next morning with a fever, sore throat, coughing, etc. which worsened throughout the night. I started on Started on Cipro (antibiotic) on Monday afternoon, May 19, and lab work came back pretty good (no neutropenia or anemia, thank you very much!), but by Tuesday afternoon, coughing paroxysms resulted in my fourth sacral stress fracture (plus I suspect soreness in ribs on both sides may indicate additional small stress fractures). That same day I started Avalox (a broader spectrum antibiotic), and upped Prednisone to 5 mg. again, which is probably not needed, but I can't take the chance (plus in return, I got approval to go back on vitamin, mineral, herbal supplements).

On May 20, I began my obligatory stress fracture regimen (beginning with three days in bed, except to go to bathroom or exercise in hot tub), and by May 23rd (4th day), woke with no sacral pain, my temperature back down to it's "normal sub-normal" (94.1) and lab tests and chest x-rays showing "normal" (under given conditions). Ergo, the "bounce back kid" has bounced back again!

On May 29 my long-time dear friend Gayle flew in from the west coast for the long weekend and we went out to dinner that night with my daughter. On the following day, Friday May 30, we took a day trip (she drove) that included Estes Park (Quality of Life). We had planned to scoot/walk to Farmer's Market and the Pearl Street Mall on Saturday, but I woke up feeling wimpy and with a low grade (for me) fever so I stayed home while she went out. My fever worsened during day and night, and Sunday a.m., per palliative care doctor's instructions, she took me to local ER where I was dx'd with pneumonia. I was given a 1-hr. antibiotic IV and placed on oral antibiotics for 9 days and then allowed to be discharged (thanks only to my palliative care doctor standing up to ER doctor who wanted me admitted). In the meantime, Gayle had to take a cab to the bus station to catch the shuttle to DIA.

Quality of Life continued to win out, however, as on that same day my cousin Cindy's 17 year old son, Zach, still came to spend the night--as scheduled--before departing for Albuquerque the following day, and he and his uncle Randy and I--at my insistence--went out to dinner, during which my temperature dropped 1.6 degrees and my supplemental oxygen 1 liter! (Quality of Life improves Survival Rate!)

Good test results (CXR and lab) on Wed June 4, meant I was able to have my 2nd Alimta infusion on June 5th, but my oncologist warned me that he is concerned that Alimta is toxic to my lungs (based on the two earlier respiratory episodes) and that if I have a third episode, he's taking me off of it regardless of its efficacy (it doesn't do any good to shrink tumors if I can't breathe). As a result, I am going to try to be a "good girl" (i.e., stay home, take it easy, etc.) until my next Alimta session on June 26. Mind you, my step-brother Paul and his wife Pat are flying in from Alaska in early July so no promises then (Quality of life)!

Being "good" didn't do any good: spiking fevers, night sweats, oxygen levels are all over the place. To ER Tue June 10 and again on Fri 06/13, but CXR the same, ditto for blood draws and urinalysis. On June 13, antibiotics were halted in case they are suppressing infection. Fever has been debilitating, and I'm weakening by the day. On June 16 I sent an early morning email to oncologist re recent Alimta/pemetrexed clinicial trial results showing no benefit for squamous cell carcinoma (another one bites the dust!). My oncologist halted Alimta, not just because of "no benefit" but because my supplemental oxygen is up to 5 liters from 1 (the dreaded third respiratory episode).

He also ordered CT scan, which I had on June 17 and and which showed my tumor and the number and size of cancerous lymph nodes are continuing to grow. He then raised my Prednisone from 5 mg. to 40 mg. after my temperature rose to 102.0 on June 18.

The good news is that I have had only low grade fevers since the night of June 19, and by June 21, my supplemental oxygen was down to 1-1/2 liters (from 5) with the aid of an oximizer. I was also out of bed long enough on June 21 to water my own plants again! (Quality of Life!) I'll be taking next six weeks off from any treatment in order to give my body a chance to "bounce back" (this also means that when my brother and his wife fly in from Alaska in early July and my cousin Nonie and her daughter Kristi fly in from CA and AZ respectively in late July that I'll have my energy back and be able to have great visits with them).

As to the future, well, what I decide will depend on what's available and the potential side effects. All I can say for sure is that Quality of Life will win out (never again will I waste time I don't have "being good" by putting up with severe side effects).

In the meantime, I've volunteered to be a moderator for Lungevity's Healthy Living forums (with emphasis on Quality of Life, of course!), and as of June 25, although my supplemental oxygen needs remain at 1-1/2 liters with an oximizer, I'm still not running a fever and yesterday, for the first time in over a week, I was able to spend some time in my hot tub--mainly just doing breathing and limbering exercises, but I also managed to complete a few low rep sets of therapy exercises as well (writes the "bounce back" kid!).

In early July, I decided to halt further chemo treatments and begin living life in the final stage of my journey to the fullest. The next day my brother and his wife flew in from Alaska, and the three of us and my daughter had a great time. Thanks to my daughter (who would make a travel agent extraordinaire!), the first week of August, we are scheduled to fly to San Diego where the two of us will meet up with my mother and spend the first week on Mission Bay and the second week cruising Baja, including ports of call at Ensenada and Cabo San Lucas (Hurrah for Quality of Life plus see http://www.lungevity.org/l_community/viewtopic.php?t=37858).

In the meantime, I made arrangements for my body to be donated to science (now that only my corneas can be used for donor transplants) via the Science Care foundation (See http://www.sciencecare.com/), the ultimate in recycling, green to the end!

Each day that passes I recover further from the toxicity of the Alimta debacle, although the increase in Prednisone raised my glucose levels again and I'm back on metformin (glucophage) for diabetes; and I'm now having problems with left foot swelling. My palliative care doctor believes this is probably a belated side-effect of last year's pulmonary embolism (PE), which probably began with a blood clot in my left foot, particularly since the other two possible reasons appear to be unlikely (one being another blood clot, but I'm on Lovenox blood thinner; and the other being superior vena cava syndrome, but this not reflected in last CT scan).

In late July, Nonie's daughter Kristi (who is also one of my daughter's best friends and the same who cut her long hair for me*) flew in from Arizona, and a day later her mother flew in from Southern California and we had an absolutely great week. Not only did I feel good all week (Quality of Life improves Survival Rate!), but the three of them helped me with shopping for new clothes (including a swim suit) and luggage for our August vacation.

* My hair is now long enough for a weave, but it turns out that it takes more hair than Kristi had for a weave so we have decided to have a "fall" made from it instead so that after I'm done wearing it, it can be donated to Locks of Love for children with cancer (See http://www.locksoflove.org).

On Thursday July 24, I had a PET scan. Based on my "non-board certified" reading of the CD I snagged on the way out the door, I thought that--as expected--while the current tumor and lymph nodes were continuing to grow, there were no new mets (metastases).

I was wrong: On Monday July 28, my oncologist advised me that the radiologist's report shows I now have mets to both my liver and my left lung (one nodule under 1 cm. in liver, multiple nodules (not counted) in my left lung, and further enlargement of lymph nodes). The metastasis to the liver meant (statistically) that I didn't have much time to left (3 wks. to three months), which was far from the worst news I could have gotten; i.e., lung cancer usually metastasizes to brain, bones or liver. Bones is excruciatingly painful (no curative therapy, but radiation often helps control the pain); and brain, of course, can result in one going "ga-ga." Having depended greatly on my brain throughout my life, the idea of being remembered by family and friends as "ga-ga" at the time I made my exit has actually my greatest fear (curative is radiation and is often accompanied by enormous fatigue).

That's the bad news. The good news is that so far I'm still relatively pain- and fatigue-free, and our vacation was great! Due to being at sea level, from the day we arrived in San Diego (August 2) until our return to Colorado on August 16, not once did i have to use supplemental O2 (other than on the plane). The trip included my being able to swim a few strokes in a "real" swimming pool (as vs. hot tub exercises) and sailing in Cabo on New Zealand's 2000 America's Cup entry (including taking the helm once we were out of the bay and sailing it faster than the NZ skipper!).

I must confess, however, that it was great to be back home--despite having to go back on supplemental O2 (1-2 liters). I resumed my post-diagnosis lifestyle (nutrition, exercise and homeopathic remedies, including vitamin, mineral and herbal supplements, as well as oxygenated water, acupuncture, massage and Ambrotose), and added Mona Vie (acai palm berries). These latter two (Ambrotose and Mona Vie) are primarily concentrated anti-oxidents, about both of which there is thin and not at all well-substantiated testamentary evidence that they may slow or stop progression of cancer.

On August 19, the same date I formally applied for Hospice Care (as vs. my previous Palliative Care), I also started an electromagnetic therapy regime using the V.I.B.E. machine (See http://www.lungevity.org/l_community/viewtopic.php?t=35882), which is touted as an energizer--among many other claims, including thin, unsubstantiated testamentary evidence that it may slow or stop progression of cancer--thus part of my continuing efforts to retain a high Quality of Life.

I am also looking into IV transfusions of Vitamin C, which, like electromagnetic therapy, is touted as an energizer and likewise claimed (thin, unsubstantiated testamentary evidence) to possibly slow or stop progression of cancer there is apparently evidence that large amounts of oral Vitamin C is "spilled" or "flushed" out of body whereas Vitamin C administered by IV allows greater amounts to be processed).

A third line of homeopathic inquiry is Vitamin D, which recent studies also show is a cancer preventative; however, when it comes to these and other possibly interesting avenues of exploration, I am--as always--trying to balance hope and reality: The last thing I want to do in my final days is waste them chasing ephemeral rainbows. We are all born to die and I want to do so with grace and dignity and in a state of serenity (rather than a mad dash race against time I don't have to waste).

As a result of my emphasis on this, I had a great weekend with my family: James and I spent Saturday together, including restocking my fish barrrel with both fish and water plants (unfortunately murdered by my housesittters during my absence). Brock and I had dinner that evening (blackened redfish!) and on Sunday my Colorado aunt and cousins came to visit, after which we went out to a Mexican dinner (chile rellenos!). I have to confess to being exhausted on Monday (my third "busy" day in a row), but I also seem to be tiring more easily (all the more reason for exploring "energizers").

The following weekend took an interesting turn: On Sat 08/30, my daughter, her girlfriend and myself took ourselves to a "tattoo parlor" where the three of us got "Cancer Sucks" tatoos--in my case my first tatoo ever! Fortunately, despite my being on blood thinner and suffering from Prednisone bruising, I survived the experience and the tattoo looks great!

On Sunday I hosted a Sunday brunch and the remainder of the week continued to be exhausting (in good part because I did too much), but I was rested up by last night (Fri 09/05) and managed to get to James' football game. Saturday night I made it to my first Rockies game since my 01/07 dx and Sunday night to a dinner party with friends.

The flip side of the coin is that I continue to tire more easily, but I did manage to see yet another doctor (MD rather than ND this time) re administration of IV Vitamin C and am tentatively scheduled to start treatment the week after next (4 weeks of 100 g 2x weekly, followed by weekly infusions in same dosage). In the meantime, I continue to take 8 g oral Vit C daily and 30,000 IU of Vit D daily (in addition to "normal" exercise,nutrition and vitamin, mineral, herbal supplement program).

My primary goal for both Vitamins C & D continues to be Quality of Life (overall feeling of well being and energy), but of course, I would not at all object to "frosting on the cake" (slow down or halt of progression).

In early Sep 2008, I upped Vitamin D to 50K IU daily and oral Vitamin C to 10K daily. In late September I began 75 mg. Vitamin C infusions 2 x weekly (turns out my body couldn't handle more than that). In October 2008, I began drinking 4-8 oz. of Mona Vie (acai berry juice).

In Oct 2008, my abdomen became distended and enlarged and my hospice doctor ordered an ultrasound in case I was experiencing effusion. The test showed no effusion, but did show rapid growth of the cancer in my liver (from one nodule under one centimeter to at least 4 tumors, each over a centimeter in size; with half my left anterior lobe now consisting of tumors). Since it has already been 3 months since liver mets were found, I'm way beyond being on borrowed time already so clearly not the worst news I could get (besides which, liver function tests are still coming back normal).

In Nov 2008, I began experiencing more fatigue and nausea. My D levels showed I was at 198 (98 is high normal) so I halted the D temporarily. I also began experiencing taste bud problems and one of the items that had to go (temporarily) was the Mona Vie (until late Jan 09, when I resumed). I also became too tired to go to electromagnetic therapy sessions. By late Nov 2008, although I was still pain-free, I was also still nauseous and increasingly fatigued, and talked to my hospice staff about ceasing all treatment (all of which was now homeopathic) in hopes of speeding up decline (one lesson I learned during this period was that misery is worse than pain--at least for the latter, one can take morphine... the inability to write emails, read books, work on my projects, or even watch a television sitcom all the way through was pure misery).

My hospice doctor asked me to hold off until she could see me, came to my house the next day, asked hundreds of questions and then advised me that it was possible that my fatigue and nausea (misery) were because I had been on Prednisone so long and as a result, my adrenal glands had shut down and were no longer producing cortisol (the natural version of Prednisone). She upped my Prednisone and told me I'd know within 72 hours if this was the cause of my misery. Instead, I knew within 24 hours (nausea and fatigue both disappeared almost immediately!). Since I was still pain-free, my Quality of Life remained my mainstay.

Another lesson learned during this time period was that the more fatigued I am, the less likely I am to stay with my nutritional, exercise, vitamin, mineral and herbal supplement regime; i.e., the worse I get, the worse I get.

In mid-Jan 2009, during another home visit by my hospice doctor, she agreed that the progression of my cancer (at least in lungs and liver) had greatly slowed (and possibly even halted). This was not based on tests (all testing re cancer ceased as soon as I went on hospice as there is no need for tests if one is letting nature take its course), but on the fact that I am doing so well physically in general (energy, no pain and still needing only 1-1/2 liters of O2).

Since the only two major changes I have made are the addition of Vitamins C & D, it is my guess (logic-based) that one or both of them (in conjunction with the ever-mysterious mind-body connection) deserves the credit.

On 01/19, despite being on Lovenox (blood thinner), I experienced what docs thought initially was a TIA (baby stroke), which presented with one enlarged pupil, slurred voice and difficulty comprehending what was being said to me. I recovered fully within 1-1/2 hours, and the next day went forward with an Inauguration Day Open House attended by over 60 people!

On 01/29, however, I had two oxygen "episodes," during which my O2 levels dropped into the high 60s-low 70s for about 5 minutes each time, whereupon I immediately upped my supplemental O2 from 1-1/2 liters to 4 liters (the max for my portable). Fortunately, I was at the clinic at the time and when the RN checked my lungs with her stethescope, there was zero air flow in both lower lobes. Five minutes later, however, both lobes were clear again and my O2 was back in the mid-nineties. Within a few minutes more, I was able to drop down to 1-1/2 liters again.

It seemed clear that the cause was not cancer growth in my lungs (in which case, my O2 needs should have risen gradually as the tumors took up more and more space in my lungs). My hospice doctor agreed the next day, but she also pointed out that they may have been symptoms of seizures, in which case my earlier TIA may have also instead been a seizure. She immediately ordered me to stop driving for the time being and prescribed anti-seizure meds (Depakote). Then, because the most likely cause of seizures is brain mets, she ordered a brain MRI. It took me two days to "process" this possibility, during which period I confess to not having been my usual calm self (see above and "Waxing Philosophical" below) re my hopes that I would not experience brain mets). Even worse was that I couldn't get scheduled for MRI for another week, thus the waiting game.

Today (02/01/09), however, my great friend Suzanne volunteered to drive me to the clinic tomorrow afternoon so that I can make a personal plea (play the cancer card) and try to get them to squeeze me in (I have never been good at "waiting").

In the meantime, because I continue to be pain-free and my brain seems to still be working well (other than some short term memory loss), I continue to treasure every moment and celebrate the Quality of My Life by Dancing in the Street with Mick Jagger and David Bowie:

--figuratively at least--and letting the Good Times Roll with The Cars:
'cause I Feel Good (James Brown): http://www.youtube.com/watch?v=IWcNiebYGuo and Girls Just Want to have Fun (Cyndi Lauper): http://www.youtube.com/watch?v=Tqf9PuKi63E while Stayin Alive (BeeGees): http://www.youtube.com/watch?v=Fdv8Qi_k-I4.

To wit, I continue to be one lucky woman.

Carole "Dance 'Til I Drop" Hammett

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Last updated 02/01/09

Side note re squamous cell carcinoma v. adenocarcinoma: The survival rate for these two types is roughly the same despite distinct differences; i.e., (1) squamous cell is usually far slower growing than adenocarcinoma (lower doubling rate), and metastasis to distant organs is usually not so fast (tends to remain in lungs in form of growing and additional tumors) except when tumor grade is poorly differentiated (as is the case with mine); (2) numerous 2nd line therapies for adenocarcinoma cannot be taken by squamous cell due to increased chance of mortal hemorrhaging (including Avastin and Nexavar); and (3) many of these 2nd line therapies are not as efficacious for squamous as for adenocarcinoma.

------------------

Medications:

02-04/07: Cisplatin and Etoposide (chemo)

02/07 Neupogen (for neutropenia)

02/07-present: Omeprazole (aka Prilosec, for stomach ulcers), Rocky Mountain Mouth Wash (aka Magic Mouthwash, for esophagus) and Nystatin (for mouth thrush)

03/07 Procrit (for anemia)

04-05/07 Taxotere (chemo--halted after one infusion of three)

05/07-present Lovenox (blood thinner, for embolisms)

05/07-present Prednisone (for radiation pneumonitis)

05/07-present Oxygen (for dyspnea resulting from embolism and radiation pneumonitis)

09/07-present Fosamax (for Prednisone-induced osteoporosis)

12/07-02/08 & 07-08/08 Metformin (Glucophage) (for Prednisone-induced diabetes)

01/08=05/08 Tarceva 150 mg.

01/08 Doxycycline for Tarceva rash

02/08 Diltiazam for rapid pulse

05-06/08 Alimta (in place of Tarceva; halted after 2 diffusions due to severe toxicity & lack of effect on squamous cell carcinoma)

01/09 Depakote (for seizures)

----------

Side Effects:

Neutropenia

Anemia

Chemo fog

Pulmonary embolism (in "good" lung)

Dyspnea (shortness of breath)

Radiation Pneumonitis (side effect of radiation therapy)

Mouth sores (side effect of chemo-radiation therapy)

Excessive hair growth (side effect of Prednisone taken for Radiation Pneumonitis)

Psychotic Episode (side effect of Prednisone)

Stress Fractures (severe osteoporosis, side effect of Prednisone)

Diabetes (side effect of Prednisone)

Cataract (side effect of Prednisone)

Rapid pulse rate (possibly side effect of radiation therapy)

Foot Swelling (possibly belated side effect of pulmonary embolism)

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  • 4 months later...

For many months now, I've been adding to "My Story: Quality of Life" (above) until finally it became so lengthy that I had to add an apology for turning it into a book!

In fact, however, other than the intro and my strong position on Quality of Life, "My Story..." has been more about actions, not thoughts; whereas, during the many months since my Jan 2007 dx (I am now seven months past my expiration date!), I have become increasingly introspective--often as a result of the postings of others--both patients and family members--to Lungevity's message boards, as well as deep, insightful conversations with members of my Hospice Care team (formerly Palliative Care).

As a result, I've decided to add "Waxing Philosophical" for my thoughts and philosophies--which have become ever more clear since July 2008 when I chose to cease further traditional treatments. The following are a jumble--no order whatsoever (perhaps that can be a future project?)

Logic Dictates:

My childhood was a chaotic mixture of wonder and dread headed by a charming and brilliant, but alcoholic father. That chaos resulted in family dynamics based on what I call "crazy-making" logic, which is why, for most of my adult life, I tried to base my own decisions on "true" logic, including in areas such as religion, ethics and morals), whether they related to my family, friends, neighbors and coworkers, parenting, my career or life in general. Because of my adherence to "true" logic, I had no need to be introspective: Just gather the facts, apply logic and each decision became easy to make (simple solutions to simple problems).

This appeared to work until the early nineties when a PTSD (post-traumatic stress disorder) episode triggered a series of anxiety attacks (with accompanying depression), each of which occurred (I later came to realize) after I fell into the trap of that early "crazy-making" logic. Each time, however, I pulled out of it (returning to "true" logic), and when diagnosed with cancer in January 2007, had been anxiety- and depression-free for several years.

Since my diagnosis, I have continued to apply "true" logic to my life, and despite initial concerns that I would slip back into "crazy-making" logic and fall into a depression, I have been able--for the most part--to remain "up" (Logic dictates that I have no time to waste on the negative!).

Bonus of Notice:

Since my diagnosis, I have also tried to balance optimism with realism, time-buying with quality of life and introspection with an outpouring of love.

I first read Pollyanna when a very young child, but her optimistic attitude has influenced my life ever since and one "bonus" of my cancer diagnosis has been regaining that long-gone joy upon awakening each morning (I have never been what I consider "spiritual" except in so far as nature is concerned, when once--and now again--every leaf, cloud, bloom and breeze thrills my soul).

Another bonus has been increased introspection--not about where I went wrong (Yesterday's regrets belong to yesterday!), but about all the positives in my past (family, friends, work, sailing, travel) and the possible positives in my future (family and friends and--who knows--possibly even more sailing and travel).

A third bonus has been the many wonderful people I've met since my diagnosis--both personally and virtually--including not only health care professionals, but fellow cancer patients and their family members. Their entrance in my life has changed me forever.

Yet another bonus has been picking up lost threads of old relationships; i.e., connecting with family members and old friends, sharing memories of times gone by, discussing how much those times meant to us and how much we have meant to each other. In fact, this latter has caused me to truly appreciate the advantages of having "notice" that one's death is approaching--as versus being hit by the proverbial bus (When my sister died in a car accident, she never got to say goodbye to us and we never got to say goodbye to her, whereas I've had some wonderful conversations with family and friends since my diagnosis).

Luck:

My lung cancer diagnosis notwithstanding, on balance, I feel lucky, as though I'm living on bonus time (I hope it's a big bonus, of course, but que será, será). After all, I've had a full and rewarding life, have loved and been loved, have experienced both parenthood and grandparenthood, had several careers I've loved (careers that enriched the lives of not only myself, but others), as well as hobbies I've loved (including yacht racing/cruising, reading, writing, research, etc.), and travelling half the world.

Although I might "feel" young to be dying (I'm now 62), the truth is that I have had a full and rewarding life, and since being diagnosed, each day has been more precious to me than the last.

Insanity:

I appear to be handling all this with "aplomb," but what if, in fact, I'm an Academy award-level actress? What if my "calm, cool and collected" demeanor is masking denial?

Am I nuts? Does it really matter? I am who I am. Some love me for it and others don't. As to the latter, that's their issue and I can live with it or die with it.

An Adventurous Journey:

I have always had a great love of learning and on top of everything else, this final journey has become the most incredible learning experience of my life.

As an agnostic, I don't have a clue as to whether there are more adventures ahead of me, but I do consider the act of dying an adventure itself--a learning adventure, and as part of my love of learning, I've definitely been doing my "homework" about the subject (including topics such as voluntary refusal of water and nutrition, palliative sedation, etc.).

Fear:

So far, I find that I don't fear death (although I certainly have no objection to postponing it as long as possible!). After all, we're all born to die. I do want to die with grace and dignity (which is why mets to the liver are far preferable to mets to the brain--I'd like to avoid being "ga-ga" when I make my exit). Dying with grace and dignity has a grand sound to it, but in fact, it will not be possible unless I can continiue to maintain Quality of Life

That doesn't mean I don't experience fear: I sometimes find myself scared, but not nearly as much as my family and friends. I hope to die with grace and dignity, and I find myself concerned sometimes that, as a result of their fear,they will be reluctant to let me go at the end--for their own sakes rather than mine (which is why I've completed all the paperwork to make that less likely; i.e., the Five Wishes form, DNR, etc.)

If I have learned anything about this last journey of my life, it is that no matter who is by my side, I will be taking it alone. Some of my family and friends have been incredibly supportive and understanding; others have exhibited fear, denial, anger and even dementia, but in the end, it's my journey and mine alone.

I have a long way to go in trying to express how much this journey has come to mean to me, but in the meantime, I awake each day joyfully, prepared to enjoy it to the fullest.

When possible I've tried to convey my philosophies to my loved ones, in hopes that they will be comforted by them after I've gone, but in some cases, they just can't take it, and I've been forced to accept that as well (I can only hope that after I'm gone, my words will reverberate and be of comfort).

I am one lucky woman, and that's what I want my family and friends to remember after I'm gone.

I hope my memorial service is a celebration of my life, not a mourning of my death, and that my family members and friends remember me as I was (warts and all) rather than turn me into a saint (no wings on this angel).

Numerous times in my life I've been the one assuming the caregiver role, I've been the strong one. I would like to think that I'm still strong, but now I need to put myself first... if I want to succeed in dying with grace, dignity, and my sense of humor still intact. It's hard to give up being a codependent after spending a good part of my lifetime in that role.

Quotes:

Among my favorite quotes: Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

I'd rather die while I'm living then live while I'm dead.--Jimmy Buffett

Dream as if you'll live forever; live as if you'll die tomorrow.--Jimmy Dean

Some situations are so bad that to remain sane is insane.--Frederich Nietzsche

The dignity to be sought in death is the appreciation by others of what one has been in life.--Dr. Sherwin B. Nuland (author of How We Die: Reflections on Life's Final Chapter).

Others of my favorite sayings include:

Life is a Terminal Condition

I don't have time to waste (borrowed from Omrita).

Acceptance:

During the past three months (Sep-Dec 2008), even though I've been growing increasingly fatigued, I find that fear has not raised it's ugly head and in fact that I am growing in acceptance. That doesn't mean I've given up, only that I'm prepared for all eventualities.

Affectionately,

Carole Hammett

December 14, 2008 Update

PS I know we're not supposed to discuss politics, but one of my short term goals was to live to the first Tuesday in November so that I could vote. My latest short term goal is to make it to January 20, on which date I'm holding an all day Inauguration Party (Open House). Yes!

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