| | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Mom was given her invite for 1 pm on Thursday, come dressed to help we will be cleaning house today. Her immediate response was "well I can't stay long because I have sororty at 6 pm that evening" I replied that I thought that we would have plenty of time. I bet that she does not come. Her loss.
My friend that is visiting until tomorrow planted 3 rose buses and another flowering bush today by the front porch. It will be wonderful when they start blooming. I hope to get some flowers out and I purchased some Lily of the Valley for a shady area that I am turning into a healing garden. It will be very nice and I have always like the lily of the valley. There is already mint growing there so it is a very fragrant place to hang out.
I heard from one of my Aunts and one of my Uncles today. It was very nice to receive a note from both of them that they are thinking of me and some of the fun things that they remember about me being a kid. Or at least younger - I am still a kid.
Saw the doc today and got some scrips for the stool softener and the antidepressants. Then went to the organic food store and bought a bunch of different juices to try. I am going to go put in 2 more cans of Jevity now and then next week I will add another can. I plan to work up to 4000 calories per day over the next couple of weeks. I am at a little over 2,200 now.
I did increase the patch to .50 today. I just could not get the pain associated with this draining abscess under control. I am learning to control my pain which has not been one of my strong suites before now. I used to be tough - but I do not want to be a tough girl any more - just comfortable.
Hope that you are staying dry Jim - it sounds like it will be wet week - but we will get more flowers that way right?? I still have to plant some squash etc if it every gets nice enough to have someone till the garden. It has never dried out enough to do it yet. Sleep tight folks I am going to raid the fridge LOL
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | Patty,
What kind of doggies do you have? This may have been answered before. My husband and I have 4 dogs; a mini Dachshund, our "curmugeon", a Jack Russell terrier, a black Lab and a yellow Lab. The Doxie and the yellow Lab were rescue animals. We love them all equally. Our lives are enriched daily by them. They always seem to know what we need. I'm sure if it becomes necessay, you will be able to find good homes for yours.
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Patty, I am glad to see a post that seems to be more like the one of a couple of weeks ago. You have more positive in this post and sound like the Patty I know and respect.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Patty
Sounds like you are keeping very busy. The healing garden sounds lovely!!!! Lily of the valley is one of my favorites too. I love planting in the spring and watching my flowers grow. Last year a hummingburd came around quite often. Do you have any of those around your flowers? Its amazing to watch them, they are so fast.
Hope today is a good one for you.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine and Patty, what kind of bird is a Real bright pretty blue and has a chest the color of a Robins? I have one that joins me for morning coffee. It sits on a limb right over my head almost and just watches. I hope to remember my camera and get a pic of it. N o Patty I didn't get very wet, just damp. I will bring my shovel and dig your garden too?? LOL Can't dig one for Christine. She is going to move. I can go help her pack tho. Geez, I have 2 empty bedrooms, maybe i can move her in. THat made me smile too. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Never saw a bird like that before. Try to get a picture of it for us. Ive let the grass take over my garden, Im not planting one this year. I was only in Ohio once by Mogantown, didnt like it too much. It was winter and very dreary, there wasnt even a restaurant for a cup of coffee but they had about 10 bars there.
Patty, hope you had a good day and you didnt overdo it. Hope you are feeling ok and the pain meds are workign for you. The patch worked wonders for me. So much better than taking meds every few hours. Hows the doggies? Are they snuggling with you in the recliner?
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Patty,
I was wondering if you can some people to my house to clean...I don't really feel like it!! Ray and I are painting our bedroom and we have been sleeping on the couch..lol Ahhh marriage:) I say, at least we're sleeping on the couch together!!
I love the idea of a healing garden..it sounds so nice. Lily of the valley has always held a special place in my heart. My grandmother used to put them in her hair before my grandfather picked up for their dates. They have been married for 71 years!!!
Thank you for keeping us in the loop. I check for your posts everyday!!
xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Jim thanks for noticing the attitude is getting better. I am starting to feel a little better. Other than this PEG keeps clogging up on me. I am using the pump so I can nap and get more food in me, as soon as it is finished I flush it with water and I have been keeping it clean with 7-up and pepsi, but this is the 3rd night in a row that I can not feed right now because it is plugged up and I can't get the food in me. I am very frustrated by it all. I believe that the Jevity through the pump is heavier than what I have been previously feeding with gravity and water and therefore it plugs up. If I can get it unplugged I will be heading the right direction at least. I really have to have more food tonight. Enough whining-
IT has been cloudy and cool, but my friend from Chicago planted 3 rose buses and a Verbacium that are all planted by the from porch now. It will be lovely. I did some more research on the healing garden today - the idea is to have continuous color, water and to have surprise color come up each season. I will do some more Googling and planning - usually I just plant and see what it looks like - I seem to have success that way.
Well I will get up and let the dogs out since I am falling asleep sitting up again, then fix my tube because I need more to eat and maybe go to sleep. I never know how tired I am until I fall asleep lately.
Lots of smiles Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | When my crappy PEG was clogging in the hospital, two things the nurses tried were cranberry juice (for the acid) and meat tenderizer.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jim,
A Bluebird has a orange belly and a brilliant blue top coat. I used to see them all the time in Virginia. They were one of the first signs of Spring.
They are however known to keep bad company.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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