PET SCAN RESULTS

P.E.T Scans!! Pet Scans!! Yay, Yay, Yay. Here's for PET Scans where the

"P" definitely does not stand for positive*
"E" stands for EXCELLENT - "news could not be better"
and
"T" stands for Thomas F. Johnston who at this time is completely CANCER FREE.

WOO HOO!! Way to go Tommy J. Thanks to everyone for the love and support. This was the news we were waiting for!

Love J

*as in positive results - which would have been bad. Instead results were negative, which is really good/no cancer!

PET SCAN

On Monday of this week (the 17th) Tom had his post-treatment PET Scan which is a test to see if all the cancer is gone. As previously posted, his initial exams checked to ensure that the localized cancer cells were gone and so far, so good. Now, these PET scan results will let us know if they caught the throat cancer before it had the chance to spread and if it did spread, that the chemo administered this summer got rid of it.

We are anxiously awaiting results which should be available later this week. This is it. I'll keep you posted. Send good thoughts.

America in Love

Smitten, I'd say. Hurray!!

Tiny Steps

So far so good on the post-treatment assessment news. Tom has had a couple of exams where his doctors have let him know that they are optimistic that they got all the cancer! Now, as much as I want to jump out of my seat on this.........the PET scan (definitive test to identify cancer cells) is not until the end of the month. Keep hoping, praying, and doing the anti-cancer dance until then, okay?

For now, though, a big sigh of relief that it looks good and our one-and-only TJM is feeling good, starting to eat more, and concentrating on putting his life back together after the hell that was this summer.

HOPE HOPE HOPE until late November!! AND while we're at it, let's HOPE HOPE HOPE that tomorrow's election gets our super-candidate Barry H. Obama elected! I want to know now!!

Good luck dems (and smart reps and smart swingers) - and good luck Tom - November is a big month!

What's Next

Unfortunately, I haven't been able to make it to Boston for a while (even a recent trip to Marshfield didn't allow the time to make it the 40 minutes north...) so I feel very out of touch. Hardly one who should be posting - more like someone who is relying on these posts to stay up to date. Since I've been on the out of touch side, though, I definitely realize how important it is to keep the information flowing. Thanks Tom for the updates, they are great.

As for an update today here's what's up - on Thursday (tomorrow) Tom will go in for scans to ensure that the treatments this summer did the trick. We'll get results on those early next week. So, do a little dance, say a little prayer, wave a little wand - whatever works for you - to make sure we get a good report & clean scans next week. I once performed a hex on Courtney Love with a knot from my hair and some maple syrup to "make her go away." That was in 1992 after a god-awful show at the Rat. Everyone knows what happened after that, so clearly I've got to come up with some new magic this time.......

Though the leaves are starting to change, it feels like Indian Summer, and it just occurred to me that I haven't posted for a while.

What a turbulent few weeks it has been in the world! It seems like all of our realities have pivoted, and I hope that all of you, my friends, are weathering this as well as possible. I hope, too, to speak with many of you and get your insights. There has been so much going on that I'm not sure that I can fully appreciate any of it. The bankruptcy of Iceland???


My health:
Healing has progressed in the past few weeks, and, aside from the last few days, I have been making in-roads with soft foods (eggs, oatmeal, etc.)...I got some flu this week which impeded my progress since the most annoying feature was that it made me cough till I threw up. It last for days and I got so depleted that I ended up in the ER last night having to get my fluids replenished. NO FUN. And, worst of all, I missed Nick Flynn's reading in Lowell. I also missed the chance of going with Drew to witness his driving test. UGH.

The flu seems to be falling away now and I am eager to get backing in the practice of eating (the radiation in my throat was catalyst of an all-liquid diet) --- I have a long list of foods I am dying to get back to...curiously, toast seems to be at the top of the list.

Old friends Donna Estes and her husband, Tad, are in Boston on October 23 for a few days, so, mark your calendars...

MUSIC:

I had high hopes for the TV ON THE Radio album and got it the second it was available, but don't love it. I am liking new Jenny Lewis "Acid Tongue"

The Mass Ave Bus

Who ever thought that the image of the #1 bus could bring with it comfort and joy? I was thrilled tonight to get a phone call from Tommy. Not only was his voice coming through loud and clear, but he also revealed that he was on the Mass Ave bus headed to the CVS to pick up a few things. The next thing I know he'll be calling me while traipsing around the Star Market looking for pecan sandies, just like old times. "Dollface? Can I pick you up a pack of salmon roulettes??? Cranberry spritzers are on sale........." Once I hear that old sing-songy ring and a few "oh shits" I'll know we're officially back in business.

BRIEFLY

Just a quick mid-month post. It's September 16. I have my voice back and I'm just starting to get active again. I'm not eating solid food, yet, but hope to again soon. Crazy goings-on on Wall Street
and the election seems too surreal to be believed.

My sister, Julie, is VERY pregnant and could go into labor any time now...

I wish I had more concrete news, but just wanted to send greetings and to
thank everyone who has been so supportive. It's good to be alive!

XX,

Tom

Last Week in Boston

Spent the night at Tom's on Friday night last week. It was the first time I've seen him in about a month and I was really encouraged. He is thin. Really thin - he's lost about 30 pounds - but his energy level is much higher than it was last time I was there, when he was trying so hard just to stay awake and talk to me even though I could tell that all he wanted to do was go to sleep. His neck, which had been extremely red and irritated, looks much much better now. He still has a great deal of pain in his throat, but I think it is starting to subside, at least a little bit.

I know that several people have expressed interest in going to visit him. From what I understand from Tom he is holding off on lots of visitors until he gets his voice back. He still only has a whisper, which can be frustrating. Apparently, his doctors have advised that his smooth and buttery voice will be back someday soon, just magically reappearing after this couple months of rest.

As always, feel free to email me or anyone listed on this blog if you have questions or would like an update between postings that show up here.

A diversion

Here with Tom, making him stay up late and doing alot of ranting about the RNC (I'm still not over it). Check this out and post it everywhere you can:

Tom here. I was released from the hospital a week ago and have just been taking it slow, trying to
heal. I'm anxious for normal life to return, but, and trying to not be too impatient.

For the past few months, every day was filled with multiple appointments, so, it's both a strange feeling and a relief to be commitment -free for a while. I can't believe Labor Day has just passed and school started in the last 24 hours for most. I feel a loss for the summer I missed, but, am just eager to get on with it.

Have been fascinated by the Presidential Election and hope to be involved once my energy returns.

Thanks to everyone for incredible generosity, love, patience, and encouragement over the last couple of months. It has been inspirational, moving and heartwarming to receive all sorts of support and positivity from so many and I really appreciate everyone's efforts to lessen my load
with this cancer 'thing'.

I would be remiss in failing to share Bettye LaVette's cover of Elton John's "Talking OLd Soldiers". Seth pointed out its' existence recently.

another weekend, another hospital stay

Tom spent the weekend at the hospital again, and was released yesterday. Let's just say that radiation sucks. He's staying with one of his sisters now, but may go home today. I've had emails from a lot of you saying that he hasn't returned yours messages. Please know that he is receiving them and appreciates them very much, but he can't talk to return calls and isn't up to doing email/facebook, etc. Hopefully, the worst is over now, and he'll continue to regain his strength. Keep thinking good thoughts.

A NEW DAY, A NEW DAY

Friday August 15, 2008

I'm done with radiation and chemo!


The Beth Israel Hospital Staff has been remarkably kind and consistent, over-all. Though, as in any medical trauma, there were some issues to get through, we soldiered through (so far). there are so many dedicated, smart, compassionate people in this field at BI that, it was astounding to see how quickly and see the Chemo / Medical Oncology/ Financial/ and many other departments could move together.

Now, for the first time in eight weeks I have a day or two free of medical appoiments, though time will tell if I fell like doing any thing else....I have a feeling one I start eating again. I may be a rockshowmaniac, though, not too much on horizon...

START AGAIN

Hi ALL and thanks for keeping up on my latest...weird times. Today was suppposed to be my last day of treatment, but now I am told that it's tomorrow, so, I am leery of claiming any day as 'final'.


Of the last couple of weeks, approx seven or eight days were spent completely without a voice and then four were spent in hospital...the home stretch, Im told...I just await word that this is done and I can SWIM............


Thanks to all for your their patience and generosity with me.

Lots of love!

Tom

Tom Out of the Hospital

Hey all - just a short one to let you know that Tom has been discharged from the hospital. He's staying at home some night and also with Julie and is continuing with his radiation treatments this week. J

Tom hospital update Sunday 8/10

Tom is still at Beth Israel, where they're working on keeping him hydrated, fed and comfortable. I just came from there. He has a wicked radiation burn on his neck that looks really painful (blasted Irish skin!) He is glad to have visitors, but he can't talk above a whisper, so be prepared for that. He's VERY unhappy having to be there, and can't wait to get back to Tremont St.

Three more radiation treatments to go, and hopfully in the coming weeks, this will all be a bad distant memory.

more on the hospital

Several of you have emailed to ask if it's okay to call Tom or send things. Calling probably isn't a good idea - he doesn't have much of a voice. But he does have his blackberry, so he may respond if you email him. Also, he can have visitors, but as Joanne said - if you're sick at all - stay home. His immune system is compromised, and he doesn't need to catch a cold. Also, he can't have flowers, and even if he was eating, he couldn't have fruit. Being neutropenic is weird - the only things you can eat are things that you know intuitively are unhealthy - processed foods.

Thanks to all of you who have contributed to the bank account. I am amazed at the generosity, but not at all surprised!

We'll try to keep this updated, but if you're feeling antsy for an update, feel free to be in touch with any of us by email.

Tom Admitted to Beth Israel

Tom has developed an infection unfortunately, so he has been admitted to Beth Israel's oncology floor. I'll let Julie chime in here if she has a minute, but I think infections due to radiation treatment are relatively common. Once they have the infection under control, they can resume his treatments.

Beth Israel Deaconess Medical Center
Stoneman 7th floor Rm 751
330 Brookline Avenue
Boston , MA 02215

Send cards and love - we'll keep you posted here.

Just heard from Julie that he is up for visitors -but his immune system is weak, so if you're sick, best to avoid the visit.

Tough Week

I'm updating the blog even though I haven't spoken to Tom since leaving Boston on Saturday night. For those of you trying to get in touch with him - he's not really on email much this week and not making many calls. He's in alot of pain and is very tired. He's staying with his sister Julie, and I wonder if maybe he will just stay there until after the treatments are over. Hopefully he'll have the chance to build up a little strength over the week-end before going in for his last three days of treatment next week. Treatment ends with a final course of chemotherapy on Wednesday so ... ugh. We'll keep you posted. Send good thoughts, okay? Thanks J

More From Boston

I had the distinct pleasure of hanging out with Tom on Saturday in Boston and while I wish I could say it was just like old times, it was in fact a little different. A couple of key things were missing - namely, his voice and his appetite. His throat is totally shredded right now from the radiation treatments, so it's very difficult to swallow. Also missing was his energy. Although he did, finally, in the late afternoon, agree to my taking him out for a drive (at which point we promptly headed out for a quick trip to the Target....).

As Julie mentions below, he's almost there. I know that on Weds the 13th while I'm waiting in line for my sandwich at lunch I'm going to have a huge smile on my face thinking that the treatments are done and that Tom can start building back up - his weight, his vocal capacity, and his spirits. Good luck in these last two weeks Tom! 9 more days and 7 more treatments.

Home stretch

I wanted to update everyone on Tom's progress and status. Firstly, thanks to all of you who support him in so many ways. Being his sister I am a bit biased, but I know you can see what I have known my whole life. He is a very special and unique person with a huge heart full of sensitivity and warmth. I often think his ability to feel compassion for others is a blessing and a curse as he is not one who can witness pain and not feel it himself. I am experiencing some of that myself. It is difficult to see him in pain and being helpless to do more. On a positive note though, he is doing really well tolerating his treatments and by all the things the medical team can measure, he is in great shape. This is very comforting as is knowing we are nearing the end of treatments. The recovery will take a while but Tom is nothing if he is not determined to get back to his life and start living again. Believe me when I say, he will not spend a single day more than is absolutely necessary recovering.

He has been pretty exhausted and unable to talk but I know the emails and communications have really kept him going. I hope we can all celebrate his new improved state of health before too long!

RAMBLING FROM TOM

HI ALL : I woke up early, at the unlovely -- for a Saturday - hour of 7 am. Everything in my house seems to smell like this special weight gain liquid I been told to 'enjoy' , but, other than that relatively minor complaint, things are good. All the expected side effects and issues have come up to radiation and chemo, and all appear to have been managed quickly.

This point I am at : over the halfway point, etc., makes me think about stuff like transcending pain (how have three weeks gone by???) , the more spiritual elements of such a diagnosis (what lesson was the purposes of this illness?) , and perhaps how I can help the next person who needs to address such a problem.

Thanks to all who have sent good thoughts and everyone who has been of help/support.
Sorry to those of you who I owe return phone calls to -- I lost my voice on Tuesday and
it's shown no sign of coming back; one of my doctors assured me that it will come back, it may just not be for a while - and a while could mean weeks (!). Thanks especially to all of my
family and friends who have made it their business to get me to appointments, to look
after my mental, spiritual, fiscal as well as physical health.

Half Way There

non-verbal

Just to add to Jo-Ann's post a bit - Tom's actually temporarily lost his voice because of the treatment. As you can imagine, this is bittersweet for those of us who want to do all the talking anyway (meaning all the bossy girls in TJ's life). At any rate, email and cards are best for the time being. Tom has been amazed at the outpouring of good wishes and other support. We're trying to remember to post here reguarly, but if you're feeling like you want an update, feel free to be in touch with any of us via email as well.

Second Chemo Tomorrow

Tomorrow, Tom will go in for his second chemotherapy treatment, and it's going to be hard. He's been doing great, but the pain in his throat is formidable. He is having intense difficulty speaking and swallowing. Unfortunately, this makes eating difficult, and he is losing weight. Of course we all know that he's a spry guy to begin with so weight loss at this point is not great and adds to his already significant fatigue.

On the positive side, he's getting closer to the end of these treatments and hopefully closer to remission. Your love and support through calls, emails, packages, cards, AND donations is unbelievable. We've just about reached our initial fundraising goal and have pledges for even more. THANKS SO MUCH!

Keep writing and sending your well wishes to him. The phone is a bit difficult just now, so email, snail mail, and of course, posts to this blog are awesome!

Thanks To All

First of all, thank you to everyone for all of your contributions to my well-being -- it is truly
amazing and humbling to experience just how kind and giving people have been, though it is
also very strange to be the center of such attentions.

It has been a surreal couple of months, and, at some point, would like to collect in one place the many tributes to our recently lost friend, Spencer Gates. Spencer, one of my oldest and most enduring friends, can't be summed up in a paragraph, so this tribute project is on for this summer.

contact

Spoke to Tommy this morning, and he's definitely feeling a bit tired. His cell phone voicemail is full as word trickles out about his situation, and everyone wants to reach out. Please don't be offended if he doesn't get back to you quickly or at all. He hasn't lost his manners - just his energy! Email is definitely preferable to phone calls for the time being - it's just easier for him to manage. If you're feeling anxious and really want an update, feel free to be in touch with Julie, Emily, Jo-Ann or me.

Tom's Diagnosis

By now, most people know that Tom was diagnosed with oropharyngeal cancer in late May. He started what is to be an 8 week course of radiation with 3 rounds of chemotherapy on July 2. He is doing great, except that he is getting tired. This is hard for Tom as he's typically up most of the night drinking coffee, reading books, seeing bands. In fact, in 20 years, I don't think I've ever heard Tom say that he was tired and wanted to hang out at home until this past week-end.

His physicians tell us that his prognosis is good, but it's going to be a long, difficult summer (one nurse told him that it would be like "crawling to the finish line").

So stay tuned to this blog - and we'll keep you posted on his progress. Tom loves getting all your calls and emails, but it's getting a little difficult for him to keep up with them, so don't fret if you don't get an immediate response.

More later - J

Remembering Spencer

Today is a sad day as folks in Boston are gathering to pay tribute to Spencer Gates. Spencer passed away this week-end after a relatively long battle with breast cancer.

I will always remember Spencer fondly from the very limited time I've had with her over the past 15 years or so. She could make me laugh so hard and bite my knuckles after saying something really over the top. We've lost a good one with Spencer, I'm sure others who knew her much better than me will want to share their thoughts.

Why this blog?

I created this blog in order to have a place to funnel requests many of us have been getting about information on Tom's progress and how to help. I hope visitors will also feel free to post their own thoughts, well wishes, and words of encouragement.