Deja vu: we blew into Atlanta again, looking like the Clampetts, with the trusty old Buick van crammed full

Leaving tomorrow

We've spent the last couple of days in Valdosta, getting things together for our extended stay in Atlanta. We leave tomorrow to move into our new apartment - Post Briarcliff, on the corner of La Vista and Briarcliff. We stayed there for Jimmy's second transplant, and liked it a lot.

Monday morning I get an in-line catheter put in my chest for IVs, then I get admitted to the hospital and they'll start giving me chemo. I'm supposed to stay in the hospital for 5 days, then spend the next 16 at the apartment, with frequent trips to Emory to get monitored. The way we understand it, this cycle will be repeated over and over for the next 6 months.

The plot thickens

Jimmy's report: excellent. Still in complete remission, and he's doing great, thank heavens.

Ellen's: The good news is that what I have is CURABLE, but the diagnosis is more complicated than originally thought. They think the large b cell lymphoma is a transformed tumor that started out as something else, like follicular lymphoma, and there's also a genetic component involved. I don't really understand it yet BUT

I have to stay up here at Emory to be treated. We'll go home tomorrow to get everything together, come back to Atlanta on Sunday, and I'll check into the hospital on Monday. The treatment is a lot tougher and more aggressive than the original R CHOP therapy prescribed, and in a 21 day cycle, I'll spend 5 days in the hospital being closely monitored and the rest of the time in the apartment, going back and forth to Emory for tests. We leased an apartment this afternoon at Post Briarcliff. The number of cycles I have to take depends on my response, but it will probably be around six months.

We'll wait a little while until we get settled in, but Dr. Lonial said we can have Andy up here with us in the apartment.

Weekend update

Things have been quiet at the Dewars' this weekend: a lot of naps, book reading, and Olympics watching. And the beautiful weather allowed us to take a few outdoor walks, which we enjoyed immensely, as did Andy.

Jimmy has really stepped up to the plate, and has been a sweet and attentive caregiver. We DO agree on two things: 1) It's a lot easier being the patient, and 2) There's something deeply satisfying about being able to care for someone you love.

It's back to Atlanta tomorrow, with appointments Tuesday. We're anxious about it, and will be so relieved to have that behind us. The unknown is scary.

Having fun yet?

Heading home

Tests all now complete, we're going back to Valdosta this afternoon. It's hard to believe it was only two weeks ago today that I had surgery - seems much longer. Since then, I have been sliced and diced and poked and prodded and stuck like a pin cushion.

The most surreal thing for us is how we've just been through all of this - same places, same experiences, same people - except now there's this role reversal, with ME being the patient. It seems to even be unnerving to a lot of the medical personnel up here that we've gotten to know so well. We're quite a novelty.

Our thoughts are turning to wigs and turbans and the like. Any thoughts or suggestions? My sister-in-law Pam suggested that I go ahead and cut my hair short before it starts falling out, to minimize the shock, which I think is a good idea.

Not much new info

It has been a long two days, and I'll try to be brief and make some sense. We came to Atlanta yesterday and both had appointments at Emory. Jimmy had his usual tests, and I had the PET scan this afternoon, and the bone marrow biopsy is tomorrow.

The tests results won't be back until Monday, but they are still pretty sure it's non-Hodgkin's lymphoma, and everyone is very positive and optimistic about the prognosis. I have an appointment in Valdosta Friday with Dr.David Parker, my surgeon, and Dr. Lonial does not want to start chemo until David signs off on it. We hope it's VERY soon. We've been told that a lot of the pain and nausea I've been having is being caused by the enlarging tumor, as some of its blood supply is cut off and necrosis occurs.

We'll have to come back up here next week, but that's okay; we're in good spirits and anxious to get started.

Valentine's Day greetings from the Cancer Twins:

togetherness taken a tad too far

Sweetie-pie

Mary and Jimmy and his birthday pie, complete with candles


Jimmy celebrated his 67th birthday yesterday, and although he wouldn't have ranked it in his favorite Top Ten, it did have some high points. Rosey and Pat and the children brought him a coconut cake, and they had a great time, which I unfortunately missed. ( In my fragile state, Jimmy thought it prudent to lock our bedroom door and tell them I wasn't at home.)

Our sweet Mary made Jimmy a pecan pie from nuts she had picked up in her backyard, and even decorated it with candles. Jimmy says it is delicious.

Too much, too soon

I eated too much!

For the week prior to surgery, I felt too ill to eat, and and had only IV fluids the whole time I was there, and when Dr Parker acceded to my wishes to go home on Tuesday, he warned, "Start back eating very slowly and lightly." Yeah, right.

I was HUNGRY. And everything tasted so GOOD. And people brought us so many delectable things. BUT by 10 o'clock last night, my poor outraged digestive system screamed, "Enough!" Doubled over in pain, I remained as sick as a dog all night long. Jimmy didn't get a wink either, and he says this past week has been the worst of his life.

Weaker and wiser now, I'm managing to keep down clear chicken broth and Coca-Cola, and am going to listen to the doctor this time.

Battling Al-Qaeda

The day after I had surgery, I must have hit that morphine pump a time or two too many, stopped breathing, and ended up in ICU on a respirator. I mercifully don't remember much, but the little I do was terrifying.

With that tube stuck down my throat and that machine breathing for me, I felt like I was choking to death, and my drug-addled, oxygen-deprived brain decided that the nurses were Al-Qaeda operatives in disguise, and that I was being water-boarded. Panic-stricken and intensely angry, I was determined to fight them to the end.

After I slugged one nurse and scratched another, I was finally overcome by their numbers, and spent the rest of the ordeal in restraints. I still have the bruises on my wrists from struggling to break free.

The Plan

I got out of the hospital yesterday afternoon, and we were both so exhausted, we disconnected the phones and slept for four hours. Except for feeling weak and sore, I am doing well. I cough a lot from being on that awful respirator, and that hurts the incision. Then Jimmy makes me laugh, with things like trying to figure out how to turn on the stove, and that hurts, too.

This is The Plan: Monday, Feb. 16th, we'll go to Atlanta, and Tuesday Jamey will go with Jimmy to Emory for his scheduled 60-day checkup. Wednesday, Jimmy will take me to Emory for a PET scan and a bone marrow biopsy, to make sure we're not overlooking something. The following Tuesday we'll go back to Emory to meet with Dr. Lonial, whom I credit with saving Jimmy's life, and having processed all the data, will spell out our plan of attack. We expect that I will start chemo ASAP, for a few months, which I'll get here in Valdosta.

I love a good plan.

Never a dull moment

I'll try to make this brief-for one thing, I'm writing on my iPhone.
Ever since Jimmy was diagnosed with MM,I have had numerous gastric complaints. It seemed logical under the circumstances, and when an endoscopy just showed a little inflammation, I accepted that I had stomach problems, and that was that.

Worsening symptoms led to a CT scan which revealed a baseball-sized mass in the mesentery. The big problem was that its proximity to large arteries and the small intestine rendered it inoperable, and there were also questions about what it is.

The pathologist in Valdosta is conferring with Dr.Lonial at Emory, and right now they are 99% sure it's B cell lymphoma: GREAT news, because that is very treatable.

I've spent several hazy days in ICU on a respirator, but am in a regular room now, and should get to go home soon . We'll let the incision heal a couple of weeks then start chemo.

Jimmy's fine except for being a nervous wreck . But he's got to stay healthy and be strong to help me get over this little bump in the road.