Approved

My husband was jumping up and down with joy when my acceptance letter came in the mail Saturday. I’d been “approved” . . . Green lit . . . Fast forwarded . . . First in line . . . to a Social Security Disability. Why wasn’t I excited? After pondering a deep set depression I realized the answer. The government stamped my cancer as “or will end in death” . . . It is one thing to walk the path of a cancer diagnosis without a cure . .. It is another to put a neon light on the trail . . . Can we use the checks? Absolutely. Have my work hours dwindled down to only a few paid jobs a week. Yes. Is it worth the psychological price? I’ll need to give this concept more time to settle in.

Stage IV “Incurable”

It was my fault.  I asked.  Dear Dr. Heinrich, “What is my official cancer diagnosis?”  The reply is my heading . . . I could have not asked and maybe held a little more hope.  I push researchers and I didn’t want to say, “Hey, over here, yeah, me, I’m a stage IV cancer patient do you think you could hurry your research up a little if I donated some tumor tissue to your research center?”  The media headlines, “Miraculous Cancer Cure” yet each and every treatment so far won’t help with my type of tumors . . .

I do have despondent days but those lately have been a brain chemistry imbalance and not emotionally triggered.

And yet, the roadblocks I’m constantly having to maneuver around, can at this point be dealt with.  It is a place where “wants” doesn’t exist only “needs” are considered.  Fantasy is replaced by reality.  I plan mind games with “wouldn’t it be nice to go to a tropical island” only to realize I’d have to take this body with me. Daily desires are filtered down to  a “cup of herbal tea” and “walk in the park.”.  I’ve learned on “bad days” I can’t mingle with “polite society”.  I learned that last week when a sad mood took over and I thought granddaughter could cheer me up.  Instead she ran to her mother.  She later said, “I was scared, I’ve never seen grandmother so sad.”

Thus a delicate balancing act between functioning, staying positive and learning how to deal with what I’ve been given in the most gracious way I can.

I always thought I’d travel more

I was fortunate as a child to have travelled to Europe with my family for six weeks when I was 8 years old.  Walt Disney had died that year and Disney Studios wanted to show the world the studio was alive and well.  My father was in charge of foreign relations and a business trip to promote the to be released movie “Jungle Book” was arranged by the studio that included mom and us kids as mini ambassadors. We stayed at High End hotels where my breakfast tea and came with a whole tea pot to take me from “pretend tea parties” to real ones.  We toured the Steiff Stuffed animals factory where dad needed to sign off on the Baloo the Bear and Kaa prototypes that would accompany the movie.  We visited Embassies where the movie “Jungle Book” was screened and we got to eat American hamburgers.

I always thought I’d travel in life.   In college I spent 9 months in Europe.  First in studies in Florence and London and the summer working in a pub in Wales.  The Welsh men would tease me by ordering drinks in Welsh and I had to do the math of pounds to dollars back to shillings.  The patrons would say “And one for you lass” and these pints added up in a night until I’d have to crawl the four flights to the small bed I had for lodging in the attic.

Then I married a musician and all travel involved what gigs we could book.  Brian would perform at small clubs and restaurants in exchange for dinner, tips and a floor for us to sleep on.  We’d get to the beach.  The Oregon coast is gorgeous. Then children came and travel got complicated financially and linguistically.  Would our one year old cry throughout the concert or sleep peacefully under the light table?  We had experiences of both.

Maybe, marrying a musician and being on a tight budget saved me.  As years rolled by travel eluded us.  What monies I could save up went to visit my mother on Molokai which happened 3 times in 25 years.  I couldn’t afford to take both children so it was my daughter who went with me.  She loved the long white empty beaches and slashing in the warm water ocean as much as I did.  My son never met my mother.

What I learned yesterday could be an important lesson between desire and reality.  There is some solid research that says states of hypoxia (lack of oxygen) promotes tumor growth. The researcher who discovered this, Dr. Baysal, states those living in high altitudes with my gene mutation, SDHB, part of the TCA (Kreb’s Cycle) are at risk for developing tumors.  Tumors can’t grow if oxygen is present.  Prolonged lack of oxygen allows tumor growth.  I asked him if this could also include flying?  He thinks definitely.  Those years I wanted to travel and couldn’t might have saved tumor growth until my fifties.  Did that long saved up for trip to Scotland and Paris for our 25th wedding anniversary trigger the spark?  I had cancer symptoms on that trip I didn’t know were cancer at the time.

Did dad travelling around the world for Disney throughout the 1960s spur his tumors on?

I can only speculate.

 

 

7 Years

It was more than 7 years ago the word cancer entered my life.  It was not invited nor did I ask it to stay.

Through the use of the internet I’ve been able to ask hard questions of even the most versed researchers.  The doctors have answered me honestly they don’t have a clue to why tumors start to grow or how to stop them except by surgery.  This was the same case with my father.  Unfortunately he didn’t have the imagining we have today to look for the little ones thus attack them before they get too big and unmanageable.

Every 3-4 months my husband and I drive to a GIST expert in Portland Oregon a five hour drive from our house.  In one day I get scans, evaluation and next four month treatment plan.  My last appointment was yesterday.  I’m going to give a detailed account of that appointment here for those who are also following SDHB germline cancers.

February 10, 2016 Portland left 4:30 am for 10 am PET scan up the hill. This requires parking at the lower campus and taking a tram to radiology. I added 45 minutes to our travel time so I wouldn’t panic and there was some last minute rush hour traffic as well as Brian missing a turn and having to go down a one way street the wrong way in order to avoid getting back on the rush hour traffic freeway. I only thought twice on this trip that we could have had a major traffic accident thus I have acquired the habit of just closing my eyes. Good think I’m not driving.

First stop at OHSU is the bathrooms then tickets to the tram. One can “ride the tram” for free but one can also say they are visiting a patient or have an appointment up the hill and thus get a free tram ticket if desired for the Disneyland part of this adventure.

PET scans take 1 hour mainly because after they inject one with a radioactive isoprobe (in my case FDG) a patient then waits in a quiet room with a warm blanket for an hour for it to distribute throughout the body especially to the tumors greedy for sugar. Then a full cup of water because they like a full bladder for imaging. The actually PET is similiar to CT (maybe same machine, I’ll have to look that up) with 15 minutes of back and forth through the “doughnut machine” where I pretend I am at the beach or on the “Inner Space” ride at Disneyland.

Back down the tram hill for a blood draw. 3 vials. And then I can eat. I’ve found a diet that is currently allowing food again. Last year I’d just fast on this day until we got back to Ashland at 10 pm to avoid my overactive nervous system which triggered diarrhea. Something is working better in my system and I’m not sure if it is my added supplements or the medical marijuana that is currently very high in CBD (which works in epilepsy thus maybe also on my out of control nervous system).

After lunch we settle in for two hours until appointment in Dr. Heinrich’s waiting room where I now bring a pillow for a short nap. I met another Gist patient, Paul, a school teacher. He was full of questions for a “wildtype gist” especially “How can you live without knowing Gleevec can help?” (Gleevec a targeted chemo that has literally saved the lives of those with “regular” gist. It is just not effective on my SDHB mutation which is a broken Kreb’s Cycle, regular gist has an oncogene, c-kit, that can be targeted and thus this chemo works for those with that mutation.) Dr. Heinrich was running 30 minutes behind before I met with him. I’m sure he was running an hour behind after my appointment.

We looked at the PET scan. No new tumors and he couldn’t really tell size from the PET but they appeared to be only a little growth. We’ll order a PET and CT next time so we can measure tumor size. I’ll also scheduled with my surgeon, Dr. Billingsley, to verify these can be removed, and when, depending on tumor size, do we need to switch from “wait and watch” to “action”. The procedure being offered is ablation which burns them out and he’ll cut the ones not suitable for burning. The ablation has to be planned before they get too big but also making sure that any new growths are included in the procedure.

We then discussed my theories. This was the first time I was excited that Dr. Heinrich seemed on board with where my research has been leading. We still don’t have an SDHB gist cell line (that was what I was trying to accomplish last surgery with getting fresh tumor tissue to research labs). But there are some SDHB cell lines for renal cell that he is going to work with. He has an SDHB lab and said he consults maybe 20ish patients including their families (which more than I thought). I will start sending patients his way. I’d been hesitant before because “Gleevec” kept coming out as part of my game plan, a part I wasn’t interested in pursuing. He didn’t mention Gleevec at all except when he agreed with the high price of these medications (Gleevec sells at $100,000 a year and costs $160 a year to make). The pharmaceuticals say it costs $1 billion to bring a new medication to market. NIH is receiving a 1 billion research funding increase with Moonshot to cure all cancers . . . This budget increase won’t go far but that didn’t stop me from writing Joe Biden and Dr. Collins (Head of NIH) to put what monies they could back into the research labs that work with SDHx: Dr. Stratakis, Dr. Helman, Dr. Pacak, Dr. Linehan, and Dr. Metzler’s labs.

We then discussed the research done on my tumor tissue from Columbia University. He said he’d relook at the report and send it to me but felt all the solutions were chemo agents that hadn’t been tried on SDHB and he doubted any would work. Not having a mouse model limits the knowledge whether any of these chemos could be effective.

I brought in two theories I wanted to explore with him. The first was if a real hypoxia situation could trigger tumor growth. Something triggers the good part of the gene to go bad. Dr. Heinrich was skeptical but I gave him correspondence I recently had from Dr. Baysel who studied low oxygen levels were a trigger in the Andes. His research lead to the discovery of the SDHD mutation in 2000. I think Dr. Heinrich will think more about this as a possible real trigger.

My second concept involved bypassing the broken Kreb’s Cycle, Complex II, with supplements. He didn’t think any supplement could help. No matter how much air you surround a flat tire with, it is still going to be flat unless you can figure out how to get the air inside the tire. This is the key we can’t figure out.

Another theory was bypassing the mutated Kreb’s Cycle and using the glycolysis cycle to achieve more energy. I feel my Bud Light is part of this equation and showed him my charts explaining this theory of increased NADH – NAD+ ratio. I think again it was “outside his original box” of thought but didn’t advise me against it. The fact I gained 10 pounds and feel I’m functioning at 90% is enough evidence in itself to “don’t change what’s working”. I think there is probably a substitute for Bud Light that would also accomplish this glycolysis but I don’t know what it is yet. I never thought fresh vegetables (my favorite foods) could almost kill me last summer . . . after two months of chronic diarrhea I remembered people die of dysentery more than cancer. I haven’t touched a fresh fruit or vegetable in a year and have my digestive system is back under control. Very strange upside down thinking but that is what I need to keep doing.

Last was the science of gene mutations. There are two types of DNA mutations. The most common is that the cancer tumor itself was a “bad mitosis” (replication) that lead to damaged DNA and as it divides more and more until we have a tumor we can see on a CT scan. Inherited mutations (called germline) are rare. A germline/blood mutation means every cell in your body, not just the tumor cells, have a good gene from mom and a bad gene from dad. The good gene has to go bad for tumors to grow. At the moment they feel most cancers are not inherited. Maybe 20%. I think that percentage is low and as more gene mutations get recognized we will see a larger population of patients whose grandfather had a pituitary cancer and the granddaughter is growing paragangliomas and they are linked by the same gene mutation.

When my first tumor was removed and labeled “benign” I was lucky not to believe my local surgeon and that a paper had just been published by Dr. Stratakis linking gists with paraganglioma by means of a SDHB DNA. It did take me two years and two research studies to get this accomplished but my instinct proved correct. What I didn’t know that every cell in my body with this mutation is operating fine (at least at half speed) and it is only the tumors that have lost the good half of the gene leading to tumors. These types of tumors can’t grow if there is oxygen present. I then suggested how we get more oxygen into my blood to “ward off” potential tumor growth. My iron level is low and I feel iron supplements might increase blood oxygen. A theory I will continue with.

I asked if my asking for tumor tissue to get to other research institutions was a problem as a researcher. He said “No” but time and money is involved so it does need to have the proper paperwork with “Who is paying” included.

My “Rogue” tumor tissue was received at NIH Monday for a complete genome. Yes! My June surgery I had a panel done by Columbia University though Dr. Califano’s lab. Dr. Heinrich did not have that report/analysis with him and was going to look for it. He felt at the time it was a list of chemo agents that had just not been tried on SDHB and he was not going to be the one to start experimenting with these unknown agents on a patient. I appreciated that.

Another theory is hypermethylation of “good” DNA then leads to damaged DNA. This is what the researchers think drives the Carney Triad kids, a methylated SDHC gene. There are some “demethylation agents” being tested for leukemia which we will watch. He hopes NIH does a study on 5-aza so we’ll know its affect on SDHx patients. He wouldn’t want me on any initial trial because of the strength of this medicine destroys good cells along with the bad ones.

Conclusion: Susceptibility to tumors is what the gene mutation brings. Actually growth of tumors is a “trigger” yet to be discovered. Possibly hypoxia including “altitude”, as Dr. Baysel’s research suggests. This is the part of the equation I think the most about and I felt like Dr. Heinrich was also looking for this as well as what agents might slow or stop growth.

My theories were considered and I felt a successful visit on two levels, my tumors are stable and Dr. Heinrich is now on the same page as I am in trying figure out triggers. I

n June we’ll repeat yesterday with an added CT scan so we can measure tumor growth precisely. I’ll also met with my surgeon to get an estimate of the time frame before I’d need surgery (his off the cuff estimate was a year). I felt positive that an honest, respected and real discussion was accomplished at my appointment. I’ll reconsider the supplements I take in terms of cost verses outcome. If these have helped with the diarrhea then they’ll be no changes. I can guarantee that the L-Methylfolate at 20 mgs a day has helped more with depression than my Lexapro. I challenge others with mood swings to try this supplement for five days. I knew immediately that it helped me go from daily tears to barely cried since starting it. This positive reaction I feel is because I have a second gene mutation, MTHFR, the folic acid system and NADPH to NADP+.

Another fun discovery. On the way home, a long drive staring at 4:30 pm with Portland rush hour traffic and our wanting to be “home” hours before we would be I took one of my cannabis pills. Turns out I can get “high” and was quite amused for a bit on the three long mountain passes where dragons with blinking red eyes that lived on most mountain tops. Then there was a cartoon movie I made out of the characters driving the car in front of us. I truly LOL for many miles.

Plans for the immediate next four months is reserving time to be with daughter and granddaughter, continuing with my research and mentoring others, and finding an opportunity to visit my son and brothers in San Diego and making sure Brian, my faithful and diligent caregiver, is supported in his needs. Yesterday could not have been easy on him either. I’m doing something right although others would look at my lifestyle as totally “out there” . . . I’d much rather be outside the box than having chemo dripped in my veins.  Feeling positive.

Stay out of corners

Depression lurks in every corner when one has cancer. I try to stay in the middle of the room where it can’t reach me. It doesn’t take much to be edged into the shadows. The usual triggers are an upset stomach, headache, wondering will I ever feel well again? Then I remember the book on optimism I read saying find the positive. I picture granddaugther laughing on the swing yesterday. This backyard swing has an old rope attached to a limb of a walnut tree. The rope is so old the tree has wrapped itsbark around the original loop. Then granddaughter wants off the swing to help Grandpa sweep the fallen leaves into a corner . . . And I remember how I have to stay out of corners.

There are the daily physical symptoms and then the harder long range reality. I already have more tumors. I will always have tumors. I have to mentally plan for another surgery when the last scars as still healing. There is no doctor who can answer why the tumors keep returning. I spend days upon days trying to find that needle in the haystack myself. I read hundreds of research papesr only to conclude “no one knows.”

The world seems noisier and more crowded when you live with limited energy. Cars seem to drive too fast. The leaf blowers are everywhere.

I crawl back under the covers for the sixth time today. Hoping a nap will give me an escape from the nausea. A cat joins me and whacks me with a claw when the nap doesn’t happen and I get up again. Try to be productive when there is nothing inspiring me to do so. What’s the reward? Another week’s stay in the hospital?

Then granddaugther drops by for a visit and “Living in the moment” becomes easy. She’s constantly moving from book to puzzle to ho,p stomp and spin. Her giggles spur the twirling faster and faster, “We all fall down.”

Fresh off the press . . . New song written by Brian Freeman during a walk in the rain last week while pondering a silent cancer . . . This speaks to more than just my condition.  MP3 version to come.

Silent Song

Waiting for the revelation that may never come

Listening to the explanation told with tangled tongues

Waiting for the day I’m told there’s no more to be done

Waiting is my last horse in the race that I can run

Every hand that I am dealt I have to fold once more

Every time I hear a knock there’s no one at the door

Special is a word that I’m beginning to despise

Special isolates you from your ordinary life

Who hears the scream that make no sound

So few can hear this silent song

Somewhere is the key that’s locked behind an unseen door

Somewhere is the balm to soothe a battered, beaten soul

Time is always running never pausing for one breath

Leaving me behind to try to catch up with the rest

One moment there is sunshine then a fog too thick to tell

If I am walking in this world or crossing into hell

Adding pieces to the puzzle, no more in the box

The picture will not come together, far too many lost

Who hears the screams that make no sound

So few can hear this silent song

Waiting for the revelation that may never come

Listening to the explanation told with tangled tongues

Waiting for the day when there is no more be done

Strangers fight inside me when they’re silent I have won

Who hears my scream that make no sound

So few can hear this silent song

Who hears my screams that make no sound

I am grateful

I haven’t posted for a year. Cancer is relentless and I’ve tried some alternative concepts that if I have the time I’ll share one being my own personal cannabis concentrate to try and shrink tumors. I had great support, great product but unfortunately this medicine in liquid form at bedtime didn’t work on my type of tumors . . . No other pharmaceutical medications do either so it didn’t hurt to “go for it” since I live in a region where it is legal and free from other cancer patients trying to make a difference. Thank you the Co2 Company for sponsoring my medication trial and your product is organic, clean, and high grade.

The last couple of months have been fairly intense. Lots of fellow patients with my cancer died . . . People I loved over five years of correspondence about the hardest thing anyone has to hear: “You have an incurable cancer” . . . Strong women who are daily sharing their stories of triumph and then final defeat.

When the doctors found my first tumor at age 50, I figured I had the same five years to live my father and aunt had after their first tumors were found. Ironically they only thing that has changed since their day in the 1970s in the medical field is better imaging . . . including PET scans with lots of radiation that I can I refuse if this radiation might help save my life? An interesting dilemma that puts a rare cancer patient in.

There are still no medications/chemo/TKIs . .. We all hope this changes soon . . . There are too many children with my disease that need to feel they might have a life after their first tumor is removed. . .. I gave myself a five year time line that has now turned into six and I am grateful. I’ve been given the opportunity to meet my granddaughter . .. my father never saw me graduated valedictorian from high school . . . Yet a fellow patient Ronda live 50 years with this disease. There is hope.

I’ve tried my own alternatives to fight this disease and they haven’t panned out but “waiting and watching” wasn’t in my nature.

I will trust my oncologist will make the right surgical decision for me when the time is right . . .

In the meantime I do outreach to help others, on other sites as well as this one . . . My poor graphic clients come in with work for me and I say, “I’ll get to your job after I solve cancer” . . . I love my clients . . . I’ve been a graphic artist and have worked with my husband in an 8 x 10 room for 32 years . . .

I’m getting a handle on my digestive system. That really helps. Although twice last week on my walk through the park I had biting pain in my stomach but I was able to continue to walk at a much slower pace. I’ve been avoiding social events because I’m often not in a state of mind for “polite society” . . . The last music party I went to a friend, not meaning anything said, “Who would want to get DNA tested and know they have a disease?” I lost it. Tears. We left 10 minutes after we arrived me hysterical . . . So I don’t put myself in those situations. One to one with friends is great. Large groups I have to pretend and although I graduated college in theatre I never liked my acting classes . . .

Bottom line . . . I am grateful .. . to my husband most for being by my side 100% and driving me to CT scans and insisting he likes doing and being with me even when I am hysterical.

I am grateful that I don’t feel alone with this disease. That I am healthy enough to fight the doctors, ask questions they don’t know the answers to and keep asking them again and again . . . I don’t think it is a coinsidence that Dr. Heinrich now has an SDHB lab he has started at OHSU. He brought down the researcher involved for me to meet and ask questions. He leaves me with his third year fellow doctors for an hour because he knows we are both teaching each other.

There are many dedicated, intelligent, giving people going through my struggles along with me. Their stories make me stronger. Their struggles are my struggles. Their CT scan reports, surgeries, drug trials are all contributing to moving this research along.

I happened upon a remark made by an oncologist’s nurse about support sites and how their are “just patients” and don’t really know anything. She is wrong. I can guarantee I’ve read 100 more pub meds than she has and together we are sharing what the researchers themselves can’t share . . . How each drug is affecting each patient. We are privy to the outcomes before the research papers can even be written.

That is my current journey . . . still alive SIX years later . ..

Cancer Clinics at the National Cancer Institute

An update. Since my book came out February 2012 I have had time to continue my journey into a rare cancer and at times thought maybe I could find the pattern that links everything together and solves this mysterious disease. I’ve done a ;year of medical research, learning terms, looking up body systems and got a fairly good grasp on why tumors present themselves. I felt it was then time to take advantage of an offer I’d had made to me 2 years ago . . . to go to the now yearly Pediatric /Wildtype Gist Clinic in Bethesda Maryland. This Clinic is at the NIH/NCI. I’d heard great things about it but wasn’t expecting it to be such a great decision. There are 12 patients from around the world invited for 2 1/2 days of tests and seeing experts in their fields on this rare cancer that I have (that they are still having a problem coming up with a name but at this point I think the doctors are leaning towards SDH deficient Gist . I had two nicknames of my own I’ve named it, “Cancer of the Krebs Cycle” and “Cancer of the Nerve Endings” . . . representing the Wildtype Gists that start in the stomach and then the mets that can be anywhere in the torso to brain. I just returned from a week at NIH. I was in two clinics at the same time. The Pediatric Gist Clinic with Dr. Helman and a Paraganglioma Clinic run by Dr. Pacak. To those who haven’t been to NIH it is an amazing place. I’ll start with my diagnosis and then continue with my thoughts and feelings. The Paraganglioma Clinic was a five day intensive with 2 MRIs and 2 PET scans. The PET scans are to look for functioning paragangliomas/pheos. The doctors then analysis the cell activity a they look for tumors. On Friday I had a short meeting with Dr. Pacak who saw 4 new small tumors. Two back in my liver (which frankly could have been the section they didn’t operate on last year, at least that is my hope), one new tumor in my stomach (damn!) and one near the kidney. Dr. Pacak’s philosophy is to get out the tumors before they reach 3 cm which then turns them into very serious with the possibility of not being able to be surgically removed. There seems to be no current truly successful medication to date except for one participant, Becky apears to be having great success with the IGF-1 Lisitnib inhibitor that is currently closed to new patients but should open up again. There is another medication being tested for renal cancer that the doctors hope will also get approval to be used for Wildtype GIST/Paraganglioma patients. Dr. Pacak thinks my tumors are GISTs not paragangliomas. My understanding was the SDHB germline mutations can produce at least four different tumors. They are all neural based cell cancer: GISTs, paragangliomas, benign lung tumors, and renal tumors. The Pediatric Gist Clinic is special because of the dedicated people involved. The research coordinator, Lauren Long and Dr. Boikos, both went out of their way to help with my anxieties, my endless questions and are very dear caring people. I felt it a pleasure and honor to meet Dr. Stratakis whom I immediately trusted. He has his own SDHx research Clinic at NIH and I’ll enjoy future correspondence with his lab. It was his paper that linked the GIST and paraganglioma together. This was crucial information that started me looking for SDHx mutation tests (which proved I had indeed inherited my father’s cancer). All the doctors, staff and patients are NIH were open, caring, informative. Everyone on campus deals with very rare cancers it was easy to talk to all other patients creating a commoraderie of us in the boat trying to be proactive against the medical sea of current knowledge and future landings. I came away relieved I don’t have tumors up and down my spine (my biggest fear) even though four new small tumors were found. One of the “side effects” of being at NIH that is unique and special is almost anyone wearing a “NIH lanyard ID badge” was willing to talk about their cancer experiences struggles and thus as patients we could support one another. Most all the patients I met were “self referred” meaning they sought out more medical knowledge when often their doctor had just given them six months to live and go have fun! My husband, Brian was with me and learned a lot about the goodness of human nature as well as Wildtype GIST. Since there isn’t any insurance paperwork to do the feel of the hospital was everyone trying to learn and help solve rare cancers. Very encouraging. We just need to try and keep budget cuts from affecting this truly unique institution. I met many patients in “my boat.” The young women Triad patients from my Pediatric/Wildtype Gist website were amazing in stance and beauty. Remarkable to see how well they are doing despite their past and current diseases. We all missed Dr. Kim immensely but he was on a three year fellowship and that ended. Dr. Boikos is now on the three year fellowship and I feel is a deep caring man with lots of knowledge that sometimes others miss because of his accent (he was born in Greece) but is an experienced doctor and will continue to monitor and is dedicated to the health of all those who attended. I was put up at an accommodation on the NIH campus for adult cancer patients called the Safra Lodge. I feel the intent of this lodging has been realized. In the common kitchen patients and caregivers could talk and get and give support to others. There were two amazing women at the Lodge who’d left their family (with young children) to be by the side of someone they’d known sometimes less than a year. These women were my heroes in their own self-sacrifice to be with someone going through something extremely complicated. One had learned the day she left she herself had Stage 2 breast cancer. One woman’s daughter had wires attached to the back of her brain (skull cut open) hoping to catch a seizure thus they’d know where to try to zap the brain to stop them. We had a morning cry to her hoping her daughter had a seizure that day so they could proceed with treatment: “Seizure, Seizure” . . . not the “Good luck” expression those in the “normal” world chant. I found the tests all easy except the for one blood draw, 12 large vials, that left me really weak for a day. The NIH campus is beautiful. This June it was very hot outside (90 with 90% humidity). Hard for me to “visit” DC but we managed slowly coming back to NIH when I ran out of strength. The best part was meeting in person some of the names I’ve written to for years on my cancer list serve, Donna and Jon, Becky, Phyllis and Kara, Gary and his wife Jacqui from London, Patty and Stephanie (such a lovely strong young woman), a new family Taylor age 12 and her mom Kelly, Mark who wasn’t at the social events but is 25 years old from Toronto Canada where his 11 cm stomach gist did respond to Sutent and it is now 7 cm and they are thinking of surgery. Every one we met on campus or off campus was open with their disease, and their fears. I felt we all gave each other ideas, strength, compassion and support to be pro-active in getting the right information on our various rare cancers. I asked at the “head doctor meeting” if my layman’s terms for these Wildtype GIST and Paraganglioma could be called “Cancer of the Krebs Cycle” and “Cancer of the Nerve Endings”. They said that was appropriate. My own situation is I was able to dispel my greatest fear (tumors down my spine). And even though they found new tumors I can go back to Dr. Heinrich in Portland Oregon for scans and have NIH as a support system as well as a place where I can get future care including surgery “for free” and expert advice in the meantime. They have yet to grow a cell line from an SDHB mutated tumor and need fresh tumors to accomplish this. I remember Dr. Kim was willing to drive a 200 mile radius of NIH to collect any fresh tumors for analysis. There was one patient at the Lodge that was having basically what is close to a bone marrow transplant but the new procedure was to take out her own cells out, treat them for the cancer, then reinject them in the tumor sites. Before injecting them the patients would have chemo for 5 days with the intention of killing off the cancer cells along with the good cells. I heard one patient after this procedure was already up and walking around the next day. Very positive experience. 12 hour flights to get back to the West Coast. If all our medical facilities could run as warm and informative as NIH our country would have a great health system.

 

You wouldn’t know where we were staying was a cancer institute not a vacation lodge in Britain!

Cancer Patient at NIH

A week getting blood tests, MRIs and PET scans.

A Cluck of the Tongue

Remember those TV clickers.  As a kid if you clicked your tongue with just the right sound frequency you could get the TV channel to switch and really anger your brothers! We’d always be fighting over what to watch when we were given TV time.  They liked horror movies and I liked Shirley Temple movies.  I watched a lot of horror movies and TV shows.  I still have nightmares about a doll with a knife behind a door, a train that never stops, or aliens coming to eat me. I wondered a few years ago about the whole teenage fantasy with vampires.  Then I remember in elementary school rushing home to watch “Dark Shadows” which had its own vampires and parallel worlds.  The fantasy as a young woman of wanting to get kissed on the neck and barring that happening settling for having your blood sucked?  Maybe.  I’ll stick with the long lost princess scenario for now.