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Sharon Arkin’s Treatment Odyssey
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February 13th, 2014

22 Months All Clear!

I’m happy to report that my 22 month post-surgery check up showed no evidence of lingering cancer cells.
I’m not happy to report that the Tucson cancer “establishment” is still not telling new chemotherapy patients about the baldness-preventing cold caps that preserved my hair and my morale.  Not a single person has contacted me for information despite newspaper and TV publicity about their effectiveness with me. I recently attended a psychology conference in Anaheim with an estimated 8,000 attendees. See the attached photo for what I wore.  I got 4 or 5 inquiries per day! I wear the sign whenever I go to big public gatherings.

The University of California/San Francisco has  been researching the effectiveness of cold caps, but uses a different system than mine. Their caps are chilled to a mere
41 degrees F, while mine were frozen at
22 degrees BELOW zero. Other research studies I’ve read with less than great results have been with caps not really frozen, just chilled.

I’ve queried the head researcher about that. No answer as yet. The San Francisco study is supposedly preliminary to full clinical trials which FDA requires before most doctors will risk prescribing them and insurance companies will pay for them.  Still, quite a few cancer centers around the U.S. are telling their patients about them and YouTube has numerous videos of doctors and happy users demonstrating their use and singing their praises.

I just read an amazing book: The Emperor of All Maladies – about the history of cancer and cancer treatments. Vigorous lobbying by dying cancer victims with nothing to lose and their advocates pressured drug companies and the FDA to release experimental drugs for compassionate before they were rigorously tested.

Sharon

Dec. 13th, 2013

End of Phase 1, Alzheimer Videos

I’m sure you’re all tired of hearing about cold caps. Bottom line: They work. I had my 6th and final chemotherapy  session on Thursday, July 12. My usual “team captain” Pam was on a  whitewater rafting trip in the Grand Canyon  and Steffi did the whole day with me by herself. On July 25, I leave for a trip to the Galapagos and Amazon rain forest with Overseas Adventure Travel (Oattravel.com), after which I will be staying with several Servas hosts in Quito (usservas.org), then volunteering on an organic farm (fbu.org). When I return (August 21), I will start 5 weeks of 5-day a week brief external radiation treatments followed by two internal “targeted” radiation treatments. No side effects anticipated. Promising note: The University of Arizona Cancer Center has invited me to talk to their staff about cold caps.

Change of subject:
As many of us are at the age when our relatives and friends may be hit with Alzheimer’s Disease or Mild Cognitive Impairment, I thought I would disseminate some of my work in this field that probably hasn’t gotten beyond the academic community. I have two clients who are dealing with relatives with dementia and I prepared the following list of online resources for them that you (or people you know) may find helpful. Start out by looking at the U of AZ photo-illustrated website about the NIA-funded Alzheimer Rehab by Students program at the U of AZ  (aka Elder Rehab Program) from 1996-2001.  http://www.u.arizona.edu/~sarkin/elderrehab.html

There are 5 Youtube videos I have uploaded covering all treatment modalities I used in my program. Go to Youtube.com and in the search box put the following:

  • Alzheimer Memory Treatment by Sarkinaz
  • Alzheimer Exercise Treatment by Sarkinaz
  • Alzheimer Supervised Volunteer Work Treatment by Sarkinaz
  • Alzheimer Video Therapy Part 1 by Sarkinaz
  • Alzheimer Video Therapy Part 2 by Sarkinaz

Feb. 16, 2012

Bummer

Just learned that I have endometrial (lining of the uterus) cancer. It all started when, during a pap smear exam, the gynecologist found something suspicious. I first had a pelvic ultrasound which revealed that the lining of the uterus was many times thicker than normal. He then did a endometrial biopsy which revealed the presence of cancer. I’ve had no bleeding, pain, or any other symptoms, so this is a complete shock.

I’m meeting with a Dr. Buscema of Arizona Oncology on Friday who will schedule me for a hysterectomy – probably some time next week. A good friend of mine has been his patient for the past year and she thinks he’s great. 

I’ll be posting periodic updates, so stay tuned…. 

Feb. 17, 2012                 

Hurry Up and Wait!

Met with Dr. Buscema this afternoon. (He’d been highly recommended by two doctors as well as my friend.) A retired doctor friend of mine came with me to make sure I asked theright questions. He was VERY impressed with the doctor, as was I. 

He wants me to have a full body catscan to see if there is anything suspicious anywhere else before he does surgery. He did a thorough physical exam, drew blood for analysis, and gave me two bottles of the barium sulfate stuff I have to drink before the catscan. He doesn’t  think what I have is an “aggressive” cancer.

Bottom line… no surgery date yet, but it could be the end of next week or the following week.

So, I’ll be leading school kids on a Sabino Canyon field trip on Monday, as usual. Stay tuned.

Feb. 21, 2012                         

Surgery Scheduled

Learned midday yesterday that Dr. Buscema had a time slot open up for this Wednesday (Feb. 22nd) at 7:30 a.m. at Tucson Medical Center (TMC) for my hysterectomy.

Spent the rest of the day rounding up medical records, arranging difficult-to-schedule-at-the-last-minute CT scan and pre-op instructions appointment and tests at the hospital for Tuesday, and shopping and organizing meals for already present and incoming bed and breakfast guests and a Sierra Club camping training weekend for which I was the  provisioner.

My bed and breakfast guests are on auto-pilot and I’ve informed them they may have to move out of my master bedroom to make room for me when I’m discharged! That’s the only bedroom at Bed and Bagels that has an insuite bath. Now it’s off to drink 450 ml of yummy barium sulfate and to bed. Tomorrow, my fare will be another bottle of barium sulfate followed by clear liquids till Wednesday. Fortunately, I’d made a big batch of chicken soup this week, so I’m set.

Stay tuned…

Feb. 23, 2012                         

Surgery Outcome

Dr. Buscema took out the uterus and found a cancerous tumor and a fibroid pressed against it and enmeshed in one fallopian tube and ovary, which he removed along with nearby lymph nodes. Lymph nodes in other parts of the body, as revealed by the catscan, were normal. 

Treatment will depend on the type and aggressiveness of the uterine and extra-uterine cells which Dr. Buscema will determine when he gets the pathologist’s report – hopefully by tomorrow. Dr. Buscema is an oncologist and gynecologic surgeon, so is eminently qualified. All future treatments necessary, will be at his office at 2625 N.

My doctor friend Martin was with me before the surgery and on hand afterward and got a detailed report from Buscema. He pronounced him and the anesthesiologist first rate. He and my friend who had had surgery from this doctor last  year, was there when I woke up. I slept for about 5 hours after the surgery and many hours during the night.

I was hooked up to a constant supply of pain meds all night and part of the morning. They discontinued the auto supply and gave me a dispenser to use manually, as needed. Never felt any pain, so they discontinued that and offered me Percoset, as needed. When I was helped out of bed by the nurse to walk for a few minutes, I felt a little pain in the abdominal area –  kind of an ache really. All I have is a couple of bandaid type patches on my belly. I ate chicken soup I’d brought for dinner last night and jello and juice.

Today I was allowed to eat whatever I wanted. I had cold cereal juice, and a Starbucks frappucino and toast from bread I’d brought from home.
 
My friend Andy made a fabulous soup from a Trader Joe’s demo recipe. Peruvian chicken, which will supplement the bland food the hospital will provide.

Not sure when I’ll be going home- either tomorrow or Saturday. Visitors welcome (at the hospital or at home) but between 6 and 8 p.m. only.

If anyone comes to my house, PLEASE do not wear any scented cosmetics, e.g. aftershave, cologne, deodorant… I have two chemically sensitive guests.

Feb. 24, 2012                 

Day 2 Post-Surgery

Saw Dr. Buscema this morning. Pathology report showed uterine cancer was deeply embedded in the uterine wall, but was contained, which means Stage 1. The other tumor was more complicated. Entwined between ovary and fallopian tube so,not contained, and it is unclear in which organ it started. (Of course, both were removed.) Doesn’t appear to have attached to any nearby organs, but treatment i.e., radiation and Chemo will be done to eradicate any stray microscopic cells that may be floating around. Treatment will start in about a month. 

Slept like a zombie all night, waking only for periodc vitals checks and meds.  Am off all drips, catheter, etc., and taking one Percoset every 4 hours for pain. They’re keeping me here one more day and then sending me to a skilled nursing facility for a few days of R&R.  Friends have been great, bringing me treats, stuff to read, and good wishes. I’m in good hands.                       

Feb. 25, 2012                             

I’m Home!

Stayed an extra day in the hospital because of a low grade fever.  Anticipated nursing home bed proved unavailable, so was discharged to home. Taking an antibiotic twice a day (which I had on hand and  was unopened, having been bought in case of emergency while traveling in China  last summer) and a pain pill every 4 hours, as needed – not always needed.

A doctor friend brought me home; another friend readied my bedroom which Bed and Bagels guests had vacated. Guests in my queen rooms are taking care of themselves (one eats just raw foods, the other: goat milk, just goat cheese, apples, and avocados – yecch!) and feeding cat and dogs and letting dogs in and out. Frozen chicken soup I prepared for a friend who had cancer surgery last spring is being thawed and will be delivered tomorrow. What goes around comes around! Am surrounded by lovely gifts from from friends: azaleas, a book I wanted to read (Behind the Beautiful Forevers – about a Mumbai shantytown adjacent to the airport), two nightgowns, homemade foods, chocolates, and bottled Starbucks frappuccino (supplementing the ones I brought with me to the hospital!)  My friend Marty who drove me home asked if I minded if we stopped at Frost Gelato on the way home.  I’d been dying for some! Their banana flavor is actually a sorbet and very dense with fruit, so really hit the spot. My appetite is still way down, but improving. No restrictions – just “as tolerated.”

Stay tuned!

P.S. I feel 100% better since coming home. Showered and washed my hair while still in the hospital – no problems there. The external evidence that anything was done to me consists of 4 bandaids on my abdomen. Amazing.

Feb. 26, 2012                                     

Hospital Anthem
(To the tune (approximately) of “The Ten Days of Christmas!”)

  • White walls a glarin’
  • Eight lights a flashin’
  • Seven buzzers buzzin’
  • Six carts a clattering
  • Five nurses chattering
  • Four cuffs a crunchin’
  • Three needles jabbn’
  • Two pills a poppin’
  • Sharonsleeping soundly!

Contrast with at home:

  • Spacious restful blue-walled bedroom with familiar private bath
  • Freshly laundered towels and sheets on my Beautyrest pillowtop mattress
  • Two solicitous bed and breakfast guests tiptoeing around
  • Bedside stocked with water, phone, pills clock
  • Cat purring comfortingly (between taking sips from my water glass – hey, I’m on antibiotics!
  • Tossed and turned the whole damned night, thoughts racing through my head. Didn’t sleep at all. Go figure!

March 3, 2012                                   

More Hurry Up and  Wait!

Had a post-op visit with a Dr. Evers, an associate of Dr. Buscema. It was to check on my healing (going well) and to give general information about what to expect in the way of treatment.  He said Dr. Buscema would be calling me with the specifics.

He said I can expect several sessions of targeted radiation, where a cylinder containing tiny radiation-emitting beads is directed vaginally to the cuff of the vagina. This is the most likely place for the bad intra-uterine cells to return to if they are to return.  That’s done in-office with no nasty side effects. 

Then there may be six weeks of daily (M-F) ten minute shotgun doses of radiation – again – in and out, no side effects – to target any stray leftover bad cells that could not be spotted by CT scan or the laparoscopic camera(?). (That would rule out any traveling for the duration.)

Chemo is a different story and each person’s “cocktail” and regimen is different. Dr, Evers could only tell me this: length and frequency of sessions under a “drip” bag vary. Usually treatments are several weeks apart. Weakness, sleepiness, nausea (now treated with meds in the cocktail, supposedly) can occur one to 3 days after the treatment, and last a few days, after which one should feel pretty normal till the next treatment. 

Hair starts to fall out after the 2nd treatment, typically, though that can vary. They advise having hair cut short and head shaved when it starts to fall out for maximum comfort.

Will report on the wheres and whens when I know. I’ve notified organizers of the family therapy conference I’m supposed to attend in Vancouver March 20-25 that I may have to cancel and have cancelled my Grand Canyon whitewater rafting trip scheduled to begin July 2.  Bummer.

Daily walking and upper body exercise is OK. Supposed to avoid vigorous classes, abdominal stress, and swimming and bathing. No dietary restrictions.

Mar. 6, 2012                           

Starting Treatment Soon

Had a meeting with Dr. Buscema today who proclaimed my surgical healing on track. He introduced me to Christina, a nurse-educator with whom I’ll have a one-to-one orientation session on Thursday afternoon to explain the ins and outs of chemotherapy. I expect I’ll have my first session early next week. That way, I’ll know right away what kind of reaction, if any, I’ll have to the treatment. There will be six of them, about 3 weeks apart, each lasting several hours. Hair loss typically occurs around the time of the 2nd session. It was suggested that I get a very short hair cut ahead of time. They have a Resource Center full of wigs, scarves, and hats one can borrow. After the session, I stopped by and selected one of the few grayish-white ones and two scarves. (My hair is gray with dark brown “low lights” and this seemed a good opportunity to experiment with going “au natural”.

I’ve called all my therapy clients to inform them I’m available to see them and have several appointments scheduled for later this week.

Have discontinued use of pain pills and am eating normally. 

March 7, 2012           

Flash! Hair loss prevention possible!

SharonincapMy brother put me on to a procedure which eliminates chemo-associated hair loss in most users: (See Penguincoldcaps.com.) 

The procedure involves wearing a series of gel-filled helmet-like caps –  frozen in dry ice  to 13 degrees below zero (Fahrenheit) – 40 minutes before, during, and 4 hours after chemotherapy.  Procedure must start on the first day of treatment or it doesn’t work. It also doesn’t work for persons with leukemia or lymph node cancers. 

I’m going for it, even if I have to delay start of treatment. A woman in Phoenix, Rebecca Eylers, a successful former user of the cold caps who represents PenguinCold Caps in Arizona, is coming to Tucson tomorrow to show me how the cap works and go with me to my “teach” session at Arizona Oncology. 

March 7, 2012                                   

Penguin Cold Caps

Below are a links to a few videos about “head freezing” that that Rebecca sent to me. 

Interestingly, Rebecca had the same cancer diagnosis that I have and was treated with the same chemotherapy “cocktail” that’s been prescribed for me: taxotere and carboplatin.  She was treated at the Glendale office of Arizona Oncology; her oncologist was Dr. Snehal Bhoola.  Originally skeptical, Dr. Bhoola was very supportive of the caps once she started with them. 

UCSF Clinical Trial ~ Dr. H Rugo http://abclocal.go.com/kgo/video?id=7828757&syndicate=syndicate&section=

Beaumont (Michigan) Trial http://www2.wxyz.com/dpp/news/health/Cold-Cap-Therapy?CMP=201110 (Includes interview with Cold Caps inventor, British scientist Frank Fronda.)

Rapunzel Project (non profit) Video – Currently there are not any oncologists in Arizona that have freezers. However, you can take the caps to chemo in ice chests with dry ice. This has the advantage to being able to finish up the scalp cooling at home which I preferred rather than having additional time spent in the chemo room. http://www.youtube.com/watch?v=JbgDPh9huMY&feature=player_embedded

March 8, 2012                       

The Kindness of Strangers

Whew! What a day! At 1:30 p.m., I met Rebecca Eylers, Arizona’s “cold caps” guru/cheerleader for lunch. She drove in from Phoenix and brought with her, for my use, two large Coleman coolers, a sample “cold cap”, a package of moleskin (for protecting the forehead), and a laser thermometer. Most important, she shared her firsthand experience with treatment and the caps, as well conversations she had with other successful users of the system elsewhere in the U.S. Her diagnosis was similar to mine and the chemotherapy drugs the same ones that I’ll be using.

After lunch, Rebecca accompanied me to the Cancer Center for my “chemo orientation” session with Christina, one of two treatment supervisor/nurses who will be on duty when I come for chemotherapy. My friend Pam, who has agreed to help me through this process, met us at the session.

As expected, Christina took the official line of most treatment centers and cancer-related organizations, i.e., there is insufficient evidence of the procedure’s safety. However, she was perfectly agreeable to my bringing friends and the necessary paraphernalia to apply the frozen caps at the required half hour intervals during my chemo sessions. I asked her to share the research and procedural literature I’d brought with Dr. Buscema and, in an attached note, asked him to read the stuff before my next meeting with him – probably next Tuesday.

Christina first played a detailed video about the treatment procedures and side effects that are possible. The list is endless and I’m going in with the attitude that I won’t have any! The one I dread most is nausea and, supposedly, the drugs they now infuse along with the therapy drugs, plus the as-needed pills they give you to take home – are wonderful. They went over everything in great detail and with patience and good humor.

There is bone pain to be expected from one drug they administer, for which I’ll have Advil and Claritin to take as needed.  Platelets, red cells, and white cells are zapped along with the bad stuff, so delayed reactions to that can be expected, but means to control them are available.  Reactions to later sessions are supposedly worse (fatigue, weakness) because the drugs are cumulative.

Bottom line: my first of six sessions will be next Friday, March 16.  Five more will occur at three week intervals., ending on or about June 29. Each session will last between 4-6 hours. First cold cap will be applied 40 minutes before the chemo infusions begin, are changed every 30 minutes, and need to continue for 2-4 hours after the chemo session ends. Each chemo “station” has a comfortable reclining chair, blankets, pillows, wifi and electrical outlets, snacks, nearby restroom (which you can access with all the attached “drip” paraphernalia).  All around are folks in wigs, scarves, or with bare shaved heads. I feel really lucky to have found out about this possibility before it was too late.

My order for the caps has already gone in. I’ve already notified VISA to expect a charge in British pounds.  There is a $600 refundable deposit for the loan of the 8 caps and a $500 per month charge. It’s unlikely my insurance will cover it.

Tomorrow morning I need to open an account with UPS and arrange for 2-day shipping. Caps (they’ll be sending 8 from their U.S. distribution center in Michigan) and are kept in a regular freezer between treatments.  The day of treatment, they are put into the cooler with dry ice so that the temperature sinks to a much lower temperature, which is required for the treatment to work. Rebecca lent me the necessary thermometer. 

Pam had prior plans to go to Phoenix this coming weekend to visit a relative. She and Rebecca have arranged for her to be trained by Rebecca’s husband to properly apply the caps before she returns to Tucson.  Pam will then train other friends of mine to apply the caps before my first treatment session.

Christina thinks I should have no problem going to Vancouver for the conference I’m registered for on March 21-25.

What an adventure!

P.S. I took pictures of today’s events and will create a slideshow of the proceedings. (Note: since writing this, Kodak has gone out of its online business and is transferring my slideshows to another site. Will add the site when I know what it is.)

March 14, 2012                     

Head Freezing Party a Success!

Last night, seven big-hearted friends came to my house to be schooled by Pam in the correct application of Penguin Cold Caps on the head of yours truly. Pam is my Sabino Canyon naturalist friend who got instruction from Rebecca, Penguin’s Arizona representative in Phoenix, Monday night. Each of those present pledged to participate one or more times in the six lengthy pre- , during, and post- chemotherapy sessions that will take place between this coming Friday and the end of June. 

All systems go for Friday!

March 16, 2012                     

One Down – Five to Go!

Today was a marathon day for me and two of my friends. The day for me actually started the day before yesterday when I was running around looking for coolers of the correct size to each hold 4 Cold Caps in their hard plastic boxes and 40 lbs. of dry ice. After many borrowings, buyings, and returnings of wrong-size/wrong-shape coolers, I found two of them (Igloo 60 quart IceCube model on wheels) at Walmart for $27 each. I also had to schlep to a distant store to buy what I thought was the correct type of a laser infrared (point and shoot) thermometer. After they cut open the plastic packaging and demonstrated its use, I bought it only to find out online when I got home that the instrument didn’t go as low as the temperature I needed. So, I will continue to use the one that Rebecca lent me.

I awoke at 6 a.m. to transfer the caps from my freezer into the coolers with the dry ice. Packed a lunch and snacks for staff and other patients and was ready to go when Pam arrived at 7:45. My friend Pete was on hand to help load the heavy coolers into her car. Got to the Cancer center in plenty of time for our supposed 9 a.m. start, which – as at every treatment session – begins with an exam and consultation with Dr. Buscema. Didn’t mind the late start, as I knew that meant he would spend as much time as necessary with me! (Which he did.)

Didn’t start on the pre-med drip till 10 a.m. Pre-meds (for which caps are worn) consist of a saline solution which lubricates the drip line and helps the flow of the actual meds. Anti- nausea drugs are also part of the mix.  The previously skeptical nurses were cooperative and watched the application of the cold caps with interest. Dr. Buscema had read all the literature, including reports of two U.S. clinical trials at our last visit and was willing to look into possible grants to test the procedure at his center.

There was minimal discomfort from the caps. I’d brought an electric blanket expecting to feel chilled. Not at all. Head was bound, but I didn’t get headache. Hardly felt the cold after the first cap or two. Scalp got numbed. Pam was joined by Steffi at 11:30 which is when I believe the first actual chemo drip began. They start the infusion of the first and nastiest drug – Taxotere – very slowly. However, as I had no reaction to it (swelling, rashes, etc.), they sped it up and I was done with both drugs in 3 hours.  But then, I needed an additional 4 hours of cap changes which we decided would be done at my home.  Both Pam and Steffi came to my house and did the first application together. Then Pam left at around 4:30 and Steffi stayed with me till 9 p.m. She is tireless, upbeat, and has the procedure down pat, and will be on hand for future treatments, along with Pam, to supervise my other less experienced friends who have volunteered for a session.

March 17, 2012                     

First Post-Tx Day

So far, so good. Today I had a shot of Neulasta, a very expensive drug ($8,000 a pop!) to help restore white blood cells that get zapped by the chemo. I’ll probably pay 20% of that. A nice billing staffer at the Arizona Cancer Center requested my 2011 tax return (which showed very little taxable income) which she said she would shop around with the various drug companies to seek grants to reduce the cost of the very expensive chemotherapy meds. (Mine are Taxotere Carboplatin). Each treatment costs the Center $28,000, for which they get less than $6,000 from my insurance company (United Health Care’s AARP Medicare Advantage policy).  I chose that plan for their Silver Sneakers (free gym memberships all over at participating gyms) – not anticipating hospitalizations (for which I paid $320 for the four days I was there. Insurance picks up all after day 5) or cancer treatment.

Typical Neulasta side effects – bone pain, for which I’m to take Aleve and over-the-counter Claritin (or generic equivalent) for 4 or 5 days after each shot.

I’m still planning to go to a previously scheduled Family Therapy conference in Vancouver next Wednesday. Will cancel at the last minute if I have to.  Meanwhile, have B&B guests checking in today and Sunday.  Hope I have an appetite for the brunch we booked at Hacienda del Sol! I prepared a freezer full of beef stew, seafood gumbo, and chicken soup in case I don’t feel like cooking in the weeks hence.

March 19, 2012                     

Day 3 Post Chemo

It’s Monday morning and I’m feeling normal! Having expected to eat a BRAT diet post-chemo (Bananas, rice, applesauce, and toast), I yesterday happily scarfed down fabulous brunch offerings at Hacienda del Sol:  eggs Benedict, prime rib, shrimp, salads, mussels, bacon, gooey desserts. Then, 3 hours later, Sonoran hotdogs in South Tucson, followed by frozen custard, followed by blue crab with cocktail sauce out of a can from Costco! I kid you not.

I report this, not to brag about our collective gluttony, but to emphasize the LACK of  the expected post-treatment nausea and/or lack of appetite.

Had 3 sets of B&B guests over the weekend – one with 3 dogs! – a black lab/great dane mix, a Bernese mountain/rottweiler mix and a little guy.  It was a zoo!

Just checked the weather in Vancouver. 36 Fahrenheit and rainy. Brrrrr. I’ll keep pills with me, but hope I don’t have to use them.  Next treatment April 10. Have my cap changers lined up and two more scheduled for training next Saturday.

Followed instructions and didn’t shampoo hair yet. Starting tomorrow, I can gently use a small amount of low PH (CHI – sold at Target) shampoo and avoid warm water and direct

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