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I sorrily have missed talking to my friends here. As many of you know, I decided to withdraw because of a rude email I received. As one of my POTSY friends told me, I shouldn't let one person rob me of the support and friendship of this group. You were right--I need you all.

I have one more chemo treatment to go. I have just had a mediport (central venous access port) installed a few days ago. Wow! What bruising...The most difficult thing for me was the intense itching I had from the dressing. They used a patch similar to what they use to cover an iv entry. I developed a rash, open sores--not fun! Still a little sore but I can live with that! Not as sore as I will be when I go through with the next step on my way to cancer survivorship--pacemaker replacement! There are much worse things in my life to bother me.

I have 1 more chemo session left. Actually, my POTS has been doing pretty good--extra hydration, weight gain (yep--you can gain weight from chemo from the steroids they give to prevent nausea). Following the chemo, I need to get my pacemaker moved so I can have radiation. They're not quite sure where to place it--the radiation oncologist would like it moved as far away as possible; the cardiologist is a little less concerned. I was surprised to find that they can actually use "extension" cords to elongate the leads so the pacemaker can be placed in a different spot. Very, very difficult to remove old leads. However, pulmonologist and cardiologist agree that the less hardware in my chest is better. After I heal from that, its 42 sessions (42 business days) of radiation. I think that the radiation may be more of a problem for me--given the fatigue that is most often associated with it.

Enough of me: How are you all?

Ernie: You have my prayers that your tests will go well and that you will find meds that will help you to emerge from the black cloud you've been bearing yourself.

MORGAN617: How are you doing? I haven't seen your postings for a bit and I am concerned.

Emily: You have been quiet for a while. I know you had some technical difficulties with forum communications. I too hope you are feeling a bit better. Anything up with LYME? My pulmonologist has always had a more than keen interet in Lyme disease. She believes the tests are frequently inconclusive. In my early days of POTS, she thought I had Lyme even though the tests were negative. I was put on IV Rocephin for some time to see if I got any relief.

Nina:You are indeed a Mighty Mouse. How you accomplished your marathon despite POTS, non-cooperating bones and joints is simply amazing. You are truly to be admired. How did you semester at university go? You will have one left, if I recall, before we can call you Dr. Mighty Mouse!

Sunfish: You too are a wonder--a true Type A personality for sure. You have tried so hard to complete your semester--how nasty are professors who don't have any compassion for people with disabilities--I am convinced that people are not handicapped==we just live in a handicapping society.

Katherine: You too are a solid friend. I admire the advice you give. You always seem to be right on target.

Miriam: I am so sorry to learn of the untimely death of your sister. How tragic that families cannot bond together during both good and bad times. You have my prayers during this period of grief!

Persephone: Your post about your experience of having the opportunity to handle and view old manuscripts was beautiful. You might want to consider having it included in one of the DINET newsletters...perhaps your joy and perseverity will provide inspiration to all of us.

To Everyone Else: I miss you all. You have my hugs and good thoughts when things are not going that well for you. As we all know, there will be good days and bad days. Hopefully--more of the good days!

Be well,


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Guest Julia59


It's sounds like you are going though a lot---but it sounds like you have good doctors to help you. It sounds like you are beating this-----and you just need to hang in there to get yourself through these last treatments.

I'm glad your POTS is in fairly good control------steroids can be a big help. I remember getting a lot at once--it made me jittery---but after that it helped a lot with POTS symptoms---mainly the fatigue.

I'm glad you came back------------ :) Your right---one person should not prevent you from getting the support you need. Right now you need us to lean on----and we will always be here------- B)

Your doing a great job hanging in there. Keep staying strong----------I'm sending my prayers for healing.

A big HUG,

Julie :0)

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Welcome back. It is difficult enough to have to deal with dysautonomia, but to add cancer to the burden is truly terrible.

I am glad to hear that you have been having chemo and that there is a plan to move the pacemaker for your radiation treatments. You have already gone through a lot and have so much more to get through.

My husband, Jeff, has stage 4b esophogeal cancer, so were are fighting cancer, too, as well as my POTS. He has a medi-port and sometimes his skin breaks out a bit when they put on the patch to keep the chemo line in place. He has had his port since July and it has been a really good way to deliver the chemo. Previously he had a PICT line, which was much more awkward.

We are just taking it one day at a time. I know that is such trite advice, but it is what everyone keeps telling us and it is the only thing that we find that does work to keep us going. So hang in there and this too, shall pass. (Another really trite, but true, thing to say).

My thoughts and good wishes are with you.

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Lois, thank you for taking the time to update us--it's good to see you here. B)

Only one round of chemo left! Good for you!!!! It must feel so nice to be able to see the finish line ahead of you :)

Yes, I have just one semester left of core courses, but I still have another year or two to get through the remaining bits--dissertation, defense and some elective courses. When I started, I couldn't focus at all on the end goal, just the day to day, but I am already anticipating the sense of relief. I'm not sure what I'll do with myself when my time is all mine after work each day!

My body has mostly recovered from the run last weekend--just to clarify, it was a 5k, which is quite a bit shorter than a marathon (a bit less than 1/8 of a marathon, 3.2 miles). I don't know if my body could ever make it through the 26 miles in a marathon (42.2 km). My sisters have done a half marathon together, also for the Leukemia/Lymphoma benefit, like me. We have a friend who has been struggling with non-hodgkins lymphoma for a few years and the runs let us feel like we can help in some small way. The race I was in raised money that went partially to research, and partially to help support a local child with the medical expenses incurred from treating his leukemia. It was just an added benefit for me to meet a personal goal at the same time, and spread a little dysautonomia awareness.

I hope that the area around your new port calms down quickly, and that the last round of chemo is a breeze for you. :) Nina

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Hi Lois, I am fairly new to the board. I just read your post and wanted to wish you the best of luck during the following weeks. Take care.

B) Jacquie

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HI Lois B)~~~~~its good to see you on the board!

wow you have been going thru alot.. !! thats great that you only have one chemo session left.. youu are an incredibly strong women to be going through chemo..alone let alone living with pots too!!

God bless you..

anyways good to see you back

HUGS to you


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Welcome back. I'm glad to know your POTS is doing better, because you are dealing with so many bigger health issues right now. I'll keep you in my thoughts and prayers that everything goes well and your body stays strong.

I will look forward to seeing your posts in the future.



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I am so glad that you are back!

Thank you for asking about me...I will try to send an update/post soon. I haven't had much steam for posting, and information on the Lyme is still coming in. It's been very complicated!

I will try to write more soon, but in the mean time, I am glad that you are back...and have just one more chemo!


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lois -

sorry i'm a bit late on the uptake but it's good to see you. and congrats on the chemo countdown. i'm so excited for you and will be even more so when the time comes for you to log on and tell us that you're down to only one radiation treatment as well (as i'm sure you will be!) i know for me how complicated the interplay between my autonomic craziness has been at times with other things (i.e. ulcerative colitis) that are no where near cancer and the accompanying treatment so can't even fathom....but am cheering you on all the way.

thanks too for the encouraging words...they're much appreciated as i've really been having a tough time physically and thus with everything else the past while.

:) melissa

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