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Mantel Cell Lymphoma, Stem Cell Harvest and Transplant, Despair, Hope, Prayer, Love, Courage – Terry’s Story

Sunday, December 8th, 2013

Greetings:  Kitsap Sun has a group of sharp, sometimes annoying, bloggers I admire most of the time for taking the time to teach and educate the rest of us.  Terry is one of them. 

A few days ago, several bloggers posted  in response to a KS health article and Terry posted a little of his story to another blogger – a hint of his Lymphoma experience and said he would give  more information privately.  I asked if I could post his story here, so everyone can read it and get the benefit of a person who has been there,  done that and survived.  Terry’s story should be shared.   Sharon

***********

Mantel Cell Lymphoma A survivors story

In 1999, when I was 48, years old, a strange transformation started in my body, large bulbous sacs over my eyes, chronic sore throat and sinusitis, and it just seemed I was always tired, constantly and ever tried.  My doctor told me not to worry, the sacs were just “lacteal swelling,” with sinusitis an effect; just cover the eyes with warm bags of water… and it would go away.

A year later I was diagnosed with Stage 4 Non-Hodgkin’s Lymphoma (NHL), a very rare form called “B-cell Mantle Cell Lymphoma,” a difficult to treat disease that (at that time) had a 10% survival rate, and no chance of a cure.

I immediately went into treatment, staying with my usual doctors at The Doctors Clinic in Bremerton, who quickly referred me to the Seattle Cancer Care Alliance (SCCA), an affiliation of UW medicine, Fred Hutchinson Cancer center, and Children’s hospital.  The SCCA was selected partly because of two senior fellows, Dr. Oliver Press, lead researcher in hematology (specifically, treatment of NHL) the other, Dr. Ajay Gopal, a pioneer in stem cell transplant; both on staff at SCCA. Both Dr. Press and Dr. Gopal were renowned worldwide as “leading edge” in developing new treatments for blood cancers.

My primary care doctor was Dr. John Pagel, who I still think of as the wizard whom saved my life.

At that time (2002) a new protocol was being investigated, one which involved extensive chemotherapy (HCVAD), total body irradiation (TBI), and stem cell transplant (SCT). The underlying idea was to kill the cancer cells with chemo, harvest stem cells from my blood, than kill any remaining cancers with TBI and a heavy dose of chemo. 

The radiation and “killer chemo” destroys not only the cancer cells, but also all other blood cells. Just like other forms of radiation poisoning, if left untreated, death is only a few days away. That’s the purpose of the Stem Cell Transplant. By putting the previously harvested stem cells back into my body, they cause the blood to re-grow healthy cells destroyed by chemo and TBI, and (hopefully) result in a full recovery of blood chemistry, free of cancer.

Two types of Stem Cell transplants were available, autologous, where the patient (me) provides the cells to be transplanted, and allogeneic, where those cells are donated from another person.  In my case, autologous was preferable, as it had less chance of rejection by my body, and lower incidence of Graft vs. Host Disease (GVHD), where foreign blood cells cause major skin irritation’s, from intense itching to open sores. Although I’ve never suffered GVHD, from talking with others, I understand it soon becomes unbearable. Thank goodness my cells sufficed.

Remember, this was a treatment preformed over a decade ago, and was experimental at the time. I understand that new protocols have been designed, especially in introducing radiation into the body, which may prevent the need of the Stem Cell Transplant.  Such treatment use antibodies which have been specially modified to find and attach themselves to the cancerous cells, avoiding healthy ones. These specially modified cells have small amounts of radiation attached to them, so they irradiate only the cancer cells, leaving other, non-cancerous cells healthy.

That’s a basic synopsis of what was done to cure me (yes, after eleven years, I’m willing to call it a cure) of my cancer, B-cell Mantle Cell Lymphoma.  Now I’ll proceed with a more personal report of my experiences of being treated at SCCA, and UW Medical Center. I also introduce my longtime girlfriend Julie, who died of brain cancer on Halloween, last year.

Perhaps at that time, my biggest worry was cost. I know that sounds silly, but at the time, prognosis for survival was maybe three years, I was uninsured, self-employed with limited savings, mostly retirement savings, that could never cover the cost of treatment. Enter the social worker staff at SCCA, who initiated a plan… spend all of my savings on treatments, then apply for Medicaid and Social Security “short term” disability benefits,  which I did.

So I blew through tens of thousands of dollars of savings, sold some property I owned, paid some more, then went onto Medicaid.  One of the most remarkable things of “paying the bills” myself was how well the hospital, my doctors and diagnostic centers worked with me on reducing costs. I would receive a bill for several thousands of dollars, and most, after one phone call, were reduced by 70%, sometimes even more.  When I finally qualified for Medicaid, financing the journey was no longer a concern. I still had to eke to pay household bills, but the small stipend from SSI, food stamps, and income from renting “the other half” of my and Julies duplex paid most of the bills. Some people I’ve talked with, those who choose to not use Medicaid or are otherwise insured, continued working through most of their treatments. All in all, in my opinion, the Medicaid system worked exactly as it should.

I’ve had people ask me: “should someone, such as you, have to lose their wealth to pay for healthcare” And I, in retrospect, respond: “it is always possible to rebuild wealth; it is never possible to recover from death… dumb question.” So here is my story.

The Chemo:

My chemo treatments used a protocol called Rituximab HCVAD, standing for Hyper Cyclophosphamide vincristine, and Dexamethasone . The official title is: “Rituximab-HCVAD Alternating Rituximab-Methotrexate-Cytarabine Versus Standard Rituximab-CHOP Every 21 Days for Patients With Newly Diagnosed High Risk Aggressive B-Cell Non-Hodgkin’s Lymphomas in Patients 60 Years Old or Younger.” Whew!, don’t you just love doctor speak.  A link to MD Andersons study is:  http://clinicaltrials.gov/show/NCT00290498. Note this study is no longer recruiting, making me think there are other, more effective treatments now available. This writing is just my experience, occurring over ten years ago.

My chemo was all administered at the UW Medical Center, in seven cycles, each cycle consisting of five to six days in the hospital receiving chemo, then two weeks resting at home.  I had no adverse effects; none of the nausea so often touted as a side effect of chemo, but did feel lethargic and very, very tired after the fourth or fifth treatment cycle.  During the entire time of receiving chemo, I was able to function well while in the hospital, most days, walking up and down five flights of stairs for exercise, caring for my own sanitation, and understanding the chemo procedures as they were done, then at home, doing the everyday “things” that needed done around the house. Julie was able to help, but we both were amazed how little our routines changed during these chemo treatments.

To me, the chemo was unremarkable, except that the swelling over my eyes disappeared after the first treatment cycle, and the drug Rituximab (I believe it was called Rutuxin) caused the strangest physical reaction…, which I could only describe as having my face torn apart, but without the pain! It felt like my jaws moved toward my eyes, pulling apart laterally from each other (as I said, it was strange) Anyway, after an injection of Ativan, an anti-anxiety drug… all was OK.  Two other long term effects of this chemo regime are constant neuropathy in my feet and hands, often presenting as sharp needlelike “jabs,” and a noticeable reduction in mental acuity, where confusion, short term memory loss, and dis-coordination hamper much of my ability to accomplish work effectively. This latter is well recognized, often called “Chemo Brain,” and it is real. I like to joke that I get the daily effect of drinking… without the expense of booze, or the malaise of a hangover!

The Stem Cell harvest

After half a year of chemo treatments, and much blood analysis, my stem cells were harvested from my blood. I can only describe this as one would envision kidney dialysis,  several hours, painlessly hooked up to a machine that sucked blood from my body,  processed that blood inside the machine, then replaced it back into me.  Again, except for boredom, rather unremarkable.

The Radiation

At the time of my treatment, two options existed for irradiating cancer cells. One Total Body Irradiation, exposed the entire body to radiation, the other, Radioimmunotheropy, where a radioactive antibody is designed and manufactured to specifically target only the cancerous cells. Once attached to the cancer, these antibodies’ deliver a lethal dose of radiation directly to that cancer, thereby saving healthy cells from radiation.

Unfortunately, after my chemo treatments, no cancer cells could be found in my blood, so the antibodys could not be designed for Radioimmunotheropy. .. meaning I had to get nuked with Total Body Irradiation (vs. this more conservative Radioimmunotheropy treatment) . This is the only time I have ever heard that *not* having cancer is a bad thing!

Anyway, Total Body Irradiation (TBI) was a process of several treatments, each where I stood for ten or so minutes in front of a device I could only call a big camera.  The “lens” of this machine shot out controlled streams of radiation which irradiated my entire body, presumable killing cancer… and everything else. That’s the downside of TBI, it kills your entire blood chemistry along with the cancer.  I actually remember a blood “lab” report, where normally blood counts would read 11.2, 8.1 4.7… this report *after* TBI read 0.0, 0,0.00….yes, it really does  kill you.

After several treatments of TBI, I was given a mega dose of chemo to kill any cancer cells that remained in my body, and sent home to marinate for a few days.

The Stem Cell Transplant (SCT)

Well, now’s the big day, so big in fact, it’s often referred to as “your second birthday.” Mine was October 31st, 2002 (yes, my second birthday is Halloween… very appropriate for a heathen such as I, and BTW, Julies favorite day of the year)

Again, for something so important, it was rather unremarkable. It was really nothing more than a blood transfusion, a bag of my own stem cells delivered intravenously over an hour or so.  The only remarkable thing about the SCT is the stem cell solution is preserved with DMSO, which caused the most obnoxious sensation of “smell” once it enters the body; sort of like snorting bleach, but worse.

So, once again, after the transplant, I was told to drink a lot of water, piss out the bad stuff, go home and come back when the real effects of the SCT hit.

The real after effects of SCT

During the TBI and SCT phase of treatments, Julie and I were temporarily living in a small apartment in Seattle. This is because the SCCA felt it necessary to be near a treatment center and Port Orchard too far away. In retrospect, living near the hospital was a good thing.

I felt good for a few days post-transplant, Ok for another few, and kind of tired and lethargic for several days after that… then completely depleted, barely able to move; a week after TBI I literally was unable to move.

Julie drove me to the SCCA, where I passed out, and awoke in an ambulance driving me to the UW Medical Center; where I spent the next three weeks in an isolated room, free from any germs that could infect my immune system. It actually was quite cool,  a room where double doors isolated me from the outside world; a nurse would walk in, close the outside door; then clear the air, open the inside door, and walk into my room; repeating the process for egress.

I don’t remember much about the next three weeks, except for the little red morphine button, which I kept pressing with no result. I remember nurses telling me to get out of bed, clean myself up; walk around the room, get a little exercise… all to no avail. I just wanted to lie there, and frankly, hoping to die. Julie would come into this isolated room to console me, and I’d tell her to leave. It was not a good time.

During this phase of treatment, you are fed intravenously, and have no real food… surprisingly enough, it doesn’t matter.  You have a TV, you have visitors, but curiously enough, once awake and aware, all I wanted to do was go back to sleep.

As a nurse later told me: “you had a tough time of it,” and in retrospect, she was right.

But things got better. My blood counts recovered, my situational awareness improved, my health recovered; I could get up and walk around. After three weeks, I was released from the hospital, and went back to Julies and my apartment.

What I remember of the next month, while living in Seattle, was how cold I was.  This was December. Pre transplant I was short and fat, around 210 pounds; post recovery, short and skinny, about 150. I had lost a lot of fat, and it seemed where ever I went, the grocery store, the laundry, for walks around the blocks… I was constantly cold. That lasted for about half a year.

Julie and I moved back to our house after half a year in Seattle, a few months after my transplant. It was a long, slow process for recovery. I could work for half an hour, say mowing the grass, then become so tired I’d collapse, lying on the ground, not really aware and panting to catch my breath;  freaking out both Julie and my renters next door;  who, I can only imagine thought “he’s finally dying.”

This went on for well over two years, but slowly my health improved. About three years post-transplant, I had an epiphany… I wasn’t living a recovery… I was just waiting to die!

Here I was, newly healthy, cancer free, rebuilding my strength; and told by the experts my disease had no cure, my prognosis three to five years to live! I knew that wasn’t right.

That was eight years ago. I’m still alive, I’m still healthy. The worst effects remaining of my cancer is neuropathy, chronic fatigue and what I call “old man brain rot,” where… well, my brain just doesn’t work like it should, and I’m kind of stupid.

But I’m healthy. I wake up in the morning sucking air. I say a little prayer each day, I pray: “Thank you for my remission, I appreciate it. Please, until my relapse, guide me how best to help those worse off than I.” Amen.

See? It’s a prayer… in no way can It hurt.

I understand that now, a decade after my treatments,  B cell Mantle Cell Lymphoma victims have a 50% survival rate to five years, and I have to think, somehow, those prayers helped. 

Terry

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Thanks for listening… Sharon


Patient Safety, Rosemaling, Spinal Disk – Yes, Related Here

Sunday, March 31st, 2013

Tsaristic stuff happens, “we don’t live in a perfect world” a young nurse recently told me when I questioned the hospital discharge papers.  Used to transparency and kind consideration – I had expected better – much better.

The following was copied verbatim with permission of Thor Dahl.  The place is Florida – not here – but we need to be aware that Mr. Dahl and his wife are credible established people and business folks running the largest international online rosemaling “club’ offered….and where I read the following shocking post.  It was a reminder – patient, friends and family –  be aware – stuff happens.

28 March 2013 – The Global Rosemaling Club:

“Yesterday we went to  my surgeon for the third visit since my surgery last December 20th. I also had my first “commercial” haircut in over a year. But Joan has been nice trimming it several times. She used to do a great job! I also drove the car for the first time. Joan drove home. But I was happy to feel that I could handle the car after more than a year as a passenger.

 

The doctor didn’t give us the kind of news that I had hoped for. Each time I go there, they take a few x-rays to see how I’m healing. He said that due to the first hospital I went to let me out without knowing that I had 2 breaks in my back, the 6 extra months it took to find this out before the final surgery in a much better hospital, was too long to straighten out my old spine. So I’ll be living with an ugly hump and pain for the rest of my life. As well as not being able to lift more than 25 pounds while being very carefully without bending too much. If I was too ruff with my back, it just could brake again. He was very liberal on giving me prescriptions for pain medicine and indicated that I should not be afraid of taking them. From next Monday, I’ll start going to their “in house” physical treatment department. It will be from 2 to 3 times a week depending on what they think will be best for me. The doctor assured me that I could get anything I asked him for. I guess he felt sorry for the way this turned out for me.

 

He clearly admitted it was due to the poor treatment from my first hospital and added that this was not the first time they had failed with their surgery or diagnoses at that hospital. So he will hopefully be a good witness, because being ruined for the few years I have left, somebody should pay for not giving me the proper treatment. This will include the arthritis dr. that gave me the wrong medicine, which gave me internal bleeding and fainting. 

 

Even with all the above negative “news”, I feel a lot better despite it’s going to be hard to get used to having an ugly hump on my back!

 

However, I feel so badly for Joan who will be stuck with my part of many of my home duties which are way too heavy for her as well, because of all the arthritis problems she has of her own. At times she can hardly move. She often doesn’t sleep many hours in her bed and have to move between the sofa and her bed. Her hands are also swollen when she gets up in the morning.

Well, it’s “nice” to get old!”

(Thor Dahl)

http://www.rosemal.com/

the-global-rosemaling-club@yahoogroups.com

Joan & Thor

Dahl House Art & Rosemaling Center

16623 West River Rd., Caribee Shores

Inglis, Florida 34449   Ph:352-447-4178

 

Based in Seattle, Consumer’s Union, “Washington Advocates for Patient Safety” (WAPS) is a Washington group advocating for patient safety. http://www.washingtonadvocatesforpatientsafety.org/patient-safety/

The fact is almost sixty years ago the epidermal needle intended to help me give birth was jammed into a spine disk.  No physician treated me – they could not find anything wrong. 

Eventually, desperately, my parents took me to a recommended chiropractor and  I was given a pamphlet showing exercises.  He circled the ones he wanted me to do. 

He gave me hope and followed his instructions exactly.  He did not examine me, nor accept payment from my parents.

He gave me a life back – I worked through the pain. 

Through the years – every decade or so – I have followed the disintegration of the disk accidentally through x-rays given for other reasons.  A recent – on purpose x-ray showed the disk is gone. 

I lived through it without treatment and lived the physically active lifestyle I knew and loved.  COPD threw a different kind of curve in 1997.

Mistakes happen. 

Mistakes are sometimes turned around with the proper care and attention.  

Exercise gave me a life, and taught me to work through the pain.   

1-IMG_2483See your doctor.  Take a friend to be sure you both heard the same thing and be proactive in your own care. 

God Bless.  Happy Easter!

Thanks for listening… Sharon O’Hara


Boob Voyage Party

Sunday, March 24th, 2013
Cindy - before breast reduction

Cindy – before breast reduction

Boob Voyage Party

According to the American Society of Plastic Surgeons

Breast Reduction, Also known as, breast reduction surgery removes excess breast fat, glandular tissue and skin to achieve a breast size in proportion with your body and to alleviate the discomfort associated with overly large breasts.”

http://www.plasticsurgery.org/cosmetic-procedures/breast-augmentation.html

Some women are born with the genes to grow the unwieldy, heavy huge breasts that can work to make their lives challenging and think about surgery, but hesitate.  Sometimes hesitate for years, a lifetime.

Cindy Dillion, 62, finally had enough earlier this year and determined to find a plastic surgeon to remove the excess burden of her oversize breasts.

Cindy’s sister had breast reduction done 35 years ago.  When the doctor asked what bra size, she wanted to be she answered – her only criteria – make breasts smaller and point my nipples, “nipples pointed at the sky.”   Thirty-five years later, Cindy’s sister declares her nipples still “point at the sky.”

Cindy’s body was marked before surgery – sculpted according to her plastic surgeon artistic eye and examination of the patients shape.  No to the fancy ‘starburst’ nipple – just smaller, balanced and each boob should be  looking ahead.  No pointy nipples. 

Cindy lost five pounds off her breasts and another four pounds off her body when they liposuctioned the fat around her belly, shoulders and back.

In the six and a half weeks since the operation, she has lost twenty-one pounds and got more than she bargained for when her body rejected the stitches – she was allergic to them.  Ten days post operation she developed an opening, by the twelfth day the slight opening was open around the nipple and caused the drain hole to shift.  An infection followed, leading to extraordinary effort from her long time husband – the husband she now calls, “Rock Star.” 

The couple turned one of their empty nest bedrooms into a spotlessly clean medical wound changing room where twice a day Rock Star follows doctor’s orders, changing the wrapping, and helping his wife heal through his devoted attention to the wounds. 

Cindy cannot bring herself to look at her wounds, as her husband does, but noted she can now see her nipples for the first time in fifteen years AND noted her active support group had their “Boob Voyage” party and look forward to the next one – the   BraBeque Party!   (burning of the old painful reminder bras)

Her bra size at the time of the operation was 42 K and Cindy guesses she may drop back to the 36 D-bra size she has not seen in twenty-five years. 

Cindy’s Seattle doctor is surgeon Mary Lee Peters, M.D.  I was impressed upon learning the doctor did not ask what bra size Cindy wanted since, it seems to me,  a good plastic surgeon should be medically artistic enough to take the patient’s body size and frame, in consideration to make the judgment call for each individual.  Hip, hip – hooray!

Insurance did not cover the cost of Cindy’s Breast Reduction – their deductible was too high and the out of pocket cost was $13,000 .00 $9,000.00 for breasts and $4,000.00 for the liposuction[S1] . 


Cindy and Rock Star Hubby

Cindy healing into a new size

Cindy healing into a new size

 [S1]Cindy Dillion is a professional Realtor working out of the Coldwell Banker Bain office in Gig Harbor.  She will talk to anyone who has Support Garments until she healsNew curves comingquestions about one of the most underrated medical procedures I know – surgery to get relief from the pain and weight of oversize breasts.   

Thanks for listening… Sharon O’Hara <familien1@comcast.net>

to get relief from the pain and weight of oversize breasts.


Does a tumor mean Cancer? Part 3 of 4

Friday, October 12th, 2012

Does a tumor mean Cancer?  Part 3 of 4

Glimpses of a patient’s life and the medical folks who helped save my life.  The University of Washington Medical Center(my lung doctor is here) and the Cancer Alliance of Seattle worked together to give me a life again.

One of the cheeriest technicians I have been around is right there at the University of Washington Medical Hospital.  Washington State first class teaching hospital.  The U – students and staff – alike is loaded with inquisitive, open minded, brilliant medical doctors teaching students to seek answers to patient’s medical woes.

Of the tremendous group of my tumor surgical medical team, this superb doctor stood out by his mention and appreciation of my first iPad covered Otter when he spotted it at my bedside table.  I appreciated his comments and conversation about a non-medical related product.  Btw… I think younger people are generally surprised many of us older folks appreciate and use new technology.

The view from my window was of one of my favorite bridges, the Montlake Bridge by the U. Beautiful views helped lessen the pain.

Need you ask?  This is without doubt the best-arranged toilet area of any I have had the privilege to know and love. The shower is just on the other side of the low wall.  The toilet was at a comfortable height and I let go of the walker, hung on to the low wall, and grasped the support bar on the other side.  I gently lowered myself and my new equipment onto the throne.

The day I was standing by the bathroom door when my incision opened and the blood flow began through the popped seal to the machine.  The bloody fluid flowed through the fingers I had pressed against the gaping open belly wound trying to hold stuff in where it belonged.   Instead, bloody fluid flooded the floor and formed running rivers downhill through my room.

The professionals who answered my call light moved swiftly to stem the bloody flow and no one raised a voice in alarm – not one.  I was immobilized in place hanging on to the pole with one hand and feeling the warm blood rush through the fingers of the other.  The warm blood flowed on down my legs while they quickly, quietly told me where to move.  They did their job with aplomb and took care of a horrified patient…like another normal day.  I had an incredible feeling of well-being in spite of the thought other belly parts and stuff might flow past my open fingers over the wound trying to hold back the blood flood.

Checkout day… the dried remains of one of the bloody flows remain under my soon to be vacated bed.

…Inhalers are important to lung patients.  The order we take them is also important.  I mention it here because my inhalers are rarely dispensed in proper order for the full benefit of my lungs.  Luckily, I know the right order to take them and do pass on that information.

I take Foradil first – a fast acting inhaler few nurses have heard of.  It is one of the best for me – opens my airway fast.  Spiriva is long lasting and second, while Qvar (inhaled steroid) is third.

Harrison Medical Center, University of Washington Medical, and  Martha and Mary in Poulsbo – none dispense Foradil…and I do not understand why.

I hope patients and med dispensing folks using other inhaler combinations see they are taken properly.

One nurse told me she did not know there is a proper order to taking inhalers.  Why not?   One possible answer…  If I were in the cancer area recovery, the nurses would be cancer oriented, not lung patient oriented for inhalers.

One of the terrific and friendly docs from my informative medical team.  Another super University of Washington/Seattle Cancer Care Alliance doctor that I cannot name due to misplacing my notes/business cards.

 Kristin, physical therapist…

 

Meet Gretchen, one of the outstanding nurses I had and now, my discharge nurse.  She is putting together the little vac machine that will collect the fluid from the tube sealed inside the unstapled lower belly surgery site.  I will wear it day and night for the next few months…while Harrison Home Health nurses will change it out every three days, per doctor orders.

Gretchen showing how the vac – the entire devise works.

 

Gretchen read directions and showed me how to change the container when it got full of the bloody belly fluid.  I was told an alarm would sound first giving me plenty of time to take care of it.

…Goodbye Nurse Gretchen …another patient going home – another patient tomorrow.   Thanks for your care and kindness.

Thank God for nurses like you…and…your detailed instructions on the belly vac came in handy the very next evening at home.

I am very lucky.  They found no wingding blooming cancer – only some strange looking cells that bear watching every four months for a while.

Please understand – Kitsap County has first class cancer docs and treatment  – I’ve talked to enough cancer survivors to know it.

That said…My first and primary medical condition involves my lungs – COPD first and Sarcoidosis second.  I will not do any surgical procedure that involves anesthesia without my pulmonologist as part of the discussion as a consultant.  While Karen Eady, MD, is my wonderful primary doctor, right here in Kitsap County,  Christopher Goss, MD is my lung doc  at the U .   Thanks to you all!

Harrison Home Health.  Part 4 of 4,  next time.

Thanks for reading… Sharon O’Hara

Good-bye and thank you, Lisa Marie.  You’ve moved on to a  fabulous person and  forever home, and we’re grateful for the eight years we had with you.  Mom S

 

 


Does a tumor mean Cancer

Friday, August 17th, 2012

Yesterday I graduated from Harrison Home Health services; an organization I didn’t know existed two months ago and where I learned firsthand that Kitsap County has the greatest group of  RN’s and LPN’s                     on this planet for medical home care.

My June 11, 2012 belly tumor operation at the University of Washington was a rip roaring success, thanks to surgeon, .Renata R. Urban, MD and her superb medical team.

Six days after the operation I returned home to husband and dogs and into the caring, capable hands of the Harrison Home Health services team.

The Harrison Home Health services team followed doctor’s orders exactly – a team care RN or LPN came every three days to change the dressing, including weekends.  The vacuum machine hooked to and inside my belly became my best friend 24/7.

At 73, I am lucky to be alive.  I’ve learned several health lessons along the way since 1997 – the key one being to continue to do whatever I can to promote early detection Spirometry testing for COPD.(Chronic Obstructive Pulmonary Disease) the third leading cause of death behind heart disease and cancer.

Getting COPD for many of us means taking a nosedive into the immune system and developing other unpleasant medical conditions. COPD is slow developing, taking about twenty years to develop symptoms enough to tell your doctor.  By then usually 50 % of the lungs have flipped from the healthy state – they are destroyed.

The fact is I was a healthy physically fit person until I was hospitalized with COPD in 1997.  Since then I have gathered one disease after another.

This latest – a fluid filled belly tumor squeezed my lungs making it harder to breathe.  It squeezed everything in its path and seemed to shut down my system with a growing hard belly and pain especially in my bone on bone left hip until I reluctantly shuffled from place to place. I canceled and rescheduled doctor appointments thinking the pain would ease with time.

As time passed and my ability to get around decreased, Chuck called various agencies in Kitsap County thinking Kitsap County must have public transportation with a lift available for patients trying to get to medical appointments.  The problem was I could not lift my left leg to step up and couldn’t use the right leg either – too painful on my left hip.  I could not lift it…only pull it after me.

We discovered one source in Kitsap but it would cost us over $400. to drive around from  Poulsbo through Tacoma to the University of Washington Medical Center for my lung appointment.

It felt like something was growing in my belly but the only possibility was impossible so I shrugged it off to imagination.  I never imagined a tumor nor mentioned it to my doctors.

Funny thing, a complete physical might well have discovered the hard as a rock-growing belly and tumor, had I not sworn off getting physicals.

It was only when I tried to cancel and reschedule my third week canceled appointment in a row with my pulmonologist, Christopher Goss, MD at the University of Washington Medical Center that I was told ”…couldn’t reschedule for the foreseeable future…” ( the doctor was off to Europe the end of the week)

I told my husband we had to make that appointment no matter what happened because I didn’t think I could manage much longer.  We HAD to make that appointment and I asked him to get what I thought would help get me into the Suburban.

It included tying a rope across the back of the front seats to pull me into the back seat once I shuffled my way up the dog plank and it should balance me into turning to sit down.  The plank was supported by the borrowed Poulsbo Wal-Mart milk crates he placed underneath the plank.

I shuffled up the plank aided by my walking sticks but the rope failed after I pulled myself inside and let go of one end.  The rope wasn’t tied off and I fell forward and twisted with my neck strained across the top of the back seat.

As soon as I could talk, I asked Chuck to get in and drive “We’re making my lung appointment…we’re going to Seattle and ferries don’t wait.”

At the UW’s parking garage, Chuck ran to get a wheelchair and I pulled myself out of the car and into the chair.  He raced us to my appointment on the third floor.

I told Dr. Goss about my hard belly and the pain.  Thank heavens he looked.  When my hard belly wouldn’t budge, Dr. Goss scheduled an x-ray and blood testing.  The x-ray showed up black and by the time Chuck wheeled me out of the blood lab, Dr. Goss was there and told us I had a room and that an ultrasound was scheduled in a few hours..

Most medical folks are cool about letting me take photos and allowing me to use them here once I explain about my purpose –  COPD and Other Stuff.

Its important that people understand that COPD is only the beginning – an opening door to really nasty, painful medical conditions that follow for too many of us.

Ask your doctor for an early detection Spirometry test.  Please.

COPD itself is a long slow smother – not painful.  Some of the medical Other Stuff can be really nasty.

Renata R. Urban, MD – Assistant Professor 

Department of Obstetrics & Gynecology – Division of Gynecologic Oncology

Seattle Cancer Care Alliance

Following are the photos Dr. Urban sent taken during the operation.

Tumor weight: 1,881 grams

Tumor weight:  1,881 grams

Somehow, I thought of operations as messy and bloody – see the tumor?

The pain from the tumor and the 1.5 gallons of black fluid they drained out twice had taken over my life.

The wonderful team of doctors – and their ability to verbalize with patients was superb…

Great doctors and teamwork

Dr. Urban and team – thanks!

I think this was the pain medicine machine that was available to me checked by a helpful nurse.

I had super docs with a great patient connection.  The gowns were worn by everyone who came into my room – MRSA.

Molly Blackley Jackson, M.D. – Attending Physician

Medicine Consult Service, Division of General Internal Medicine.  UW Medicine

Dr.Salahi will be a wonderful Radiologist if patient rapport matters.  He did a super job of making me feel at ease during an intensive pre-patient interview.  I am glad for the opportunity to meet him on his last day in Internal Medicine.

Dr. Jackson was a bright spirit this day and every time she visited after the operation.  She and the other docs were incredibly verbal, friendly and informative…Just what this patient would order.

Thanks for reading…Sharon.

Part 2 of 4     Next time… the machine that acts like a sump pump was inserted into my belly and more ….


Cellulitis brings a new depth of being and the best shoes in Kitsap County

Monday, October 3rd, 2011

COPD – Chronic Obstructive Pulmonary Disease for many people is only the beginning of a series of medical conditions.  For me the latest is Cellulitis/Lymphedema – nasty painful stuff…you do not want.  Apparently, COPD trips the immune system for some of us leaving us open to whatever comes down the pike.  Lessons to be learned – do not let COPD develop.

Find a doctor willing to give a four-minute Spirometry test with annual physicals for early detection COPD and other issues, including asthma.  COPD leads down a path you might well avoid with early detection.

Cellulitis and Lymphedema can arrive by ignoring edema, as I did for years after my COPD diagnosis.  If you have edema, follow your doctor’s instructions to get rid of it.  Cut out the salt –whatever it takes – do it to avoid what is now for me, a chronic medical issue. Did I mention painful?  Do whatever it takes to avoid it…beginning with COPD early detection Spirometry.

The photos show the progression of this session of ER diagnosed Cellulitis and the good results from the quick action of the Harrison ER team, Dr. Jeffrey Morse, Tessie and Florida Girl.  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001858/#adam_000855.disease.causes

Cellulitis pain is a great leveler…after days and weeks of it, I can’t find my notes from the ER.  Tessie and Florida Girl are RN’s working the shift and the care they give er patients is extraordinary.

The plus side – it has been over a year since the last open weeping and leg pain thanks to getting patient education and lessons on wrapping legs from Mellissa Mercogliano, PT, OCS at the Center for Orthopedic & Lymphatic Physical Therapy in Port Orchard.

No water workout until this stuff heals.

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