"Double-Boarder" Triple ?

Simon24 said:

Your Positive Attitude is Amazing

We are new to the Lymphoma board and I already know you as someone who is very helpful.  I am sorry to hear you need treatment that sounds pretty uncomfortable and will definitely keep you in my prayers. 

Simone

GKH, Simone, and all others: 

Thanks for your kind wishes.  Surgery is December 3, the surgeon says he will do it laproscopically, putting a mesh under the rip, from underneath.  This will be the fifth time this guy has worked on me: Biopsy, port install, port removal, and appendectomy.  He knows my guts !  

All I worry about is the general anesthesia (I have trouble waking up from a ten-hour sleep !). At least the prostectomy did (according to all tests) remove all of the cancer, which was the objective anyway. 

"Can't buy a perfect car; can't get a perfect surgery."  All we can do is deal with it and make the right choices.

Thanks again,  max

I started with a pulmonologist about 2.2 years ago, testing for shortness of breath.  What happened since most of yiou have read already. He detected fibrosis, both sides, and a small nodule in the lower right lung.  While he said it was most likely benign, he said that protocol required that it be scanned periodically for two years.  I had though about refusing the scans, but he said that would be "AMA" (Against Medical Advice), and could confuse insurance or treatment later, if such became necessary.

I got the two-year, final scan news today from his RN:  No enlargement of the nodule.   Presumption is that it is benign, and no further testing required.

I'm thankful,

max

OO7 said:

Wonderful

I too have been struggling with shortness of breath.  2 plus years.  Been to cardiologist, pulmonologist, thoracic.  I too have fibrosis.  I thought it was just stress due to everything yet when I'm most stressed it's gone???

Glad you have positive news!

007,

My fibrosis was discovered only AFTER chemo ended (several years after, actually), which is why the doc thinks it was caused by reflux, not the Bleomycin.  I am told fibrosis is not curable, but stopping the progression is doable in most cases; mine has not worsened in two years.

I began breathing difficulties in 1986, after my chest cavity was crushed, but it resolved in the years following, until beginning chemo, when I at times I could barely breath at all.  I can recall episodes in bed when I would pant like a dog to get ozygen, when there was no exertion at all of course.

Like you I have been through the heart scans, the ejection fraction ultrasound, a slew of breathing function tests.  I have no explanations, because the doctor doesn't either.  I use Symbicort, which helps, although I find that  immediately after inhaling it I start coughing for a few minutes -- how ironic.  He also gave me an emergency inhaler, since he said I tested positive for something called "non-allergic asthma."  I have never needed to use that one.

Like Bob Dylan sang in his 70s hit Tangled up in Blue:  "The only thing I knew how to do was to keep on keepin' on."

Still keepin on; you do the same !

max

Max Former Hodgkins Stage 3 said:

The Holy City

Mary,

Feel very free to email me regarding trips to Charleston. It's nickname The Holy CIty comes from the multitude of churches and denominations that date from its beginnings. Charleston had no Puritans, unklike the Northeast. Its founders were nearly all Anglicans (Episcopalians in the US; CHArleston was initially an outreach of Bermuda).  Like Louisiana, many areas in historical times were named after the local Parish, not county. 

Charleston was very tolerant, however, and had one of the largest Jewish populations in North America, as well as a significant early Roman Catholic element.  Huguneuts (French Prostestants) were also common, as were Unitarians.  A week tour of Charleston could consist of nothing but seeing famous churches, and you wouldn't get to them all.

I grew up there, worked for years at the College of Charleston downtown (the 13th oldest college in the US; Revolutionary War soldiers camped on its grounds). Numerous movies partially filmed there, including Scarlett (I actually had a view of much of the filming from my office).  One thing I definitely recommend: Wait till the fall.   It was 97 the other day, with humitity at 80%, and a heat index of over 110.  Daytime temps of 100 are not uncommon.  All of the area is surrounded by massive swamps and tidal creeks, and the humidity is unbearable to people unaccustomed. The fall and winter are delightful however. Plus, the crowds clear out toward winter. I only go to the beaches in the winter time.  Summer is a massive tourist crush, and moving about is slow, hard, and stressful.

The Articles of Succession were signed there at St. Andrew's Hall on Broad Street, on property now owned by the Catholic Cathedral.  Signers of the Declaration of Independence and the US Constitution buried in its downtown graveyards; Magnolia Cemetery by itself is worth a trip to the town. Huge New Orleans-style maulsoleums; a huge Civil war burial area. The cemetery is open daily and free. You could spend two days walking it.

http://www.magnoliacemetery.net/

Blackbeard the Pirate frequented the town. Famous for ghost tours and haunted spots (like Savannah to the south).  Seafood, amazing beaches, some of the most impressive historic architecture in the Western Hemisphere. Too many huge plantations to list up and down the "Lowcountry Coast," which runs from around Myrtle Beach near the NC line, to below Savannah, near Jacksonville.  Massive tracts are environmental preserves.

Georgetown County, SC, just up the coast from Charleston, is especially full of preserved rice plantations, while Hilton Head is near Savannah. Kiawah Island in Charleston (formerly owned by the Kuwaitis) is world-famous for the Ocean Course golf course.  Boone Hall Plantation, open for tours, is claimed to be "the most photographed plantation house in America." I have no idea.  My cousin, who is a "gripper" in the movie industry, had a bit part there while the film North and the South filmed some scenes there.

You would need at least a week to even begin to see the area in any detail. Fort Moultry, across the Charleston harbor, is where Edgar Allen Poe wrote The Gold Bug, and just off shore is where the CSA (Confederate) submarine Hunley was raised. It is now in a preservation museum and lab in North Charleston, available for viewing.

The College: http://www.cofc.edu/about/index.php

Ocean Course: https://www.kiawahresort.com/golf/the-ocean-course

Boone Hall: http://boonehallplantation.com/

I know this is not cancer-related, so anyone wishing to write please do so via the email service here.

max

A 63 year old first-cousin down in Charleston got some ill-fated news two weeks ago:  He turned gold-colored one day and could not stop vomiting, went to the ER.

Scans and tests determined that every organ in his abdomen is covered with tumors, that began in the liver.  He is going home to hospice today. Oncologsits agreed that there is no form of treatment. They give him a month.  We was not sick previously. He has not eaten in a week, but is taking liquids.

In a roundabout, backward way, I see this as a positive, a teachable moment:  As I have noted repeatedly, lymphoma, given that it s very treatable, is one of the least tragic forms of cancer that a person can have.  We have hope, options. I was always of the opinion when on chemo: Tell me anything doctor, just don't tell me there is nothing you can do, nothing left to try.

Be thankful in your hope,

max

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