It is SO GOOD to HEAR FROM YOU!!! I have been thinking about you, and PRAYING everyday! This is what I truely believe...Your bladder issues were what is known as DEVINE INTERVENTION! As with my brain surgery was which prompted the pre-op chest x-ray finding the lung nodules!
Girlfriend this has Gods hands written all over it! This was ment to be found and delt with! M.D. Anderson is one of the BEST facilities for dealing with this, and as it seems with a much better bed side manner. As to the Doctor at the Cleveland Clinic sounds to be very ANAL and looks at numbers as though it were code. Those statistics are just that, NUMBERS, it dose not take the indiviual patients generalized condition and cicumstances into concideration! Kind of reminds me my surgeon telling me that mine was a "classic case" of lung cancer, and me telling him, I've defied the odds before. He called it deniel, and I called it FAITH! You keep that FAITH my friend, it will take you far! Good for YOU going for that second opinion! Oh, and do me one small favor, if you see that surgeon again, give him a little "smack" for me, and I dont mean a kiss either...SHAME on him!
Well I went back to Mayo in Feb. for a re-scan of my lungs, and I have some new "nodular thickening" in my right lung, at the area they recected. The Pulmonologist said "had" that been cancer, seeing this scan would make her very worried that it was back. She wrote in the report she "thinks" these are benign given the fact the main mass was benign. I HATE that word "think", but the plan is to re-scan in July and take it from there.
Then I went back to see the Cardiologist over there in April, I had a "loop recorder implant" put in which will monitor my heart 24/7. This device is implanted in the chest. The plan there is is to wait for another "event" to happen with my heart then they will know wether its a pacemaker OR a defibulator I need. He needs to make sure what had happened to me in the hospital with my heart taking those long "pauses" IS what happens when my body isnt under stress ie..having surgery. So thats the plan with that.
Anyway my friend ,thank you so much for letting me know how you are! With God, Prayer, Faith, and a positive attitude you will get through ALL of this!
Annette, so good to hear from you also! I need positive feedback, and you made my day, thank you...yes, I feel I will make it just fine, God has certainly been there for me, the prayers have been unbelievable for me, they have poured in from all over!! and I thank you so much for yours, that has truly made a difference....
Oh Annette, your lungs will be fine, just as before, God is there for you just as he was beside you before...I will continue praying for you also for that device implanted in your chest to monitor your heart that all works out, which I am sure it will, and for July when they plan on rescanning your lungs....you will be fine, you are strong, and have the faith...I am a lot stronger now I feel than I have ever been..sometimes it takes something crucial in your life to make you see and change things that you should have before, you know?? I will be praying for you...we have a worldwide prayer list we have here at work, where your name is put in and prayers are said for you all over the world, yours will be included...last name not needed, God knows who we are...take care...love, J.
Annette, it amazes me some times that I still have a job!! I will start over again, as I do not know where I sent it to, yikes....
I am so glad you had your vacation as planned!! I would of made the same call as far as them wanting you to stay in ER, I wouldn't have either, and for the very same reasons!! sorry to hear about your cardiac implant getting infected...your alright now, right?? was it for the same reason the other two times, or was it for something else?? I feel bad that you had problems, but so glad you did go ahead with your plans!! honestly, how are you feeling now??
So glad you had a good time with your sons though and was able to be with them, well, I know you were with the one, but I mean the other also that you visited...did you see some wonderful sights??
I finished my third treatment, and am onto my fourth come, July 9th...After my second treatment, I had a bad allergic reaction...couldn't breathe, ..they gave me a "triple " dose of Benadryl, triple cocktail they called it...anyway, it worked... this next time, it was only slight, and I doubt I will have it anymore...scary though....on the 7th I will have a cat scan (which is midway ) and then again three weeks or so after my sixth I believe, if I have it right...I take a shot called Neulasta now, which is given to me the day after each chemo treatment...it builds up the white cell count, as it went down some and they were afraid it would of put my chemo off, but it managed to come back up the day before treatment, but he ordered these shots now, (my Dr.) so it helps with the bone marrow...very painful after about 3-4 days, (side effects) and it's time released, so, it kind of keeps going, but maybe not as bad as it was...bones throb, terribly, kind of hard to walk at times...but that's all a part of it, so you take what's handed to you and go on from there...... Let me know how you are doing today, okay?? all is okay as far as infections, etc...??? waiting to hear from you....love, J.
Yes the two other visits to the ER were for the same thing. They wanted to keep an eye on it to make sure it was healing. Yes it appears to be gone at the moment, THank GOd. I'm hanging in there. I'm still trying to learn this whole thing with "pacing yourself"! I usually push myself too hard one day, and pay for it the next few days with weakness, muscle pain, and of course the fatigue that never leaves. I take a couple naps every day trying to catch up, but that never seems to happen. I just keep pushing forward, and refuse to let this totaly ruin my life, just need to improve my "pacing skills". That's a hard thing to do when I was always so active and my job was so physical, but I will get it, eventually...
I did re-scan in Febuary for my lungs and have two new nodules in my right lung(which is the one they removed part of). So I have to re-scan again in August. They had scheduled me for re-scan for July, and a follow up with my cardiologist at the same time, but for some reason I recieved a "revised" schedule while I was on vacation and it was changed to August. I think Im going to call them though and see if they can change it back to July. I've been having those same "twinges" of pain in my chest, and numbness in my arm as I had before when the MAI infection was growing. The report the pulmonologist wrote after the re-scan in Feb. said I "think" the new nodular growth are benign given the fact the main lesion that was removed was benign. I just hate the word "THINK"...and given the fact this dang muscle disease can make me more suseptable to malignancy, just seems to keep me on edge all the time. But all I can do is keep all my appts. and hope for the best. I also made an appt. today to have another inturnal ultrasound to check my ovaries again. I was supose to have one in March , but with all the lung business going on I put it off. I have been getting cysts on my right ovary for a few years now, and my left ovary had went into hiding. Well my last ultrasound showed the 4 cysts on my right ovary had went down, but my left ovary came out of hiding and had two cysts on that. So given all my other issues the GYN wants to make sure these cysts are "functional cysts" as were the ones on my right ovary. Anyway that is scheduled for mid July.
I can imagin how scarey that was for you to have those reactions! I do know what its like to not be able to breath while having reactions and scarey is putting it mildly. Thank GOd the benadryl worked! I will certiantly pray that it dosent happen again!
I'm so sorry to hear about the bone pain your going through right now, and what you have to go through physicaly to rid your body of this terrible beast!
With you keeping the positive attitude, and your wonderful spirit, WILL get you through this my friend!
Continued prayers are coming your way and will also pray your white cells stay up, you have amazing positive results with CT scan on July 7th, and soon this will all be a battle YOU CONQUERED!
Many HUGS, Continued prayers,
God bless, and stay strong
my friend!
Love, Annette
Annette, sorry its take me this long to reply....
I am glad to hear that your cardiac implant infection has not returned and you seem to be doing alright with that...feel bad that you even had to go to the ER during your vacation, but good to know that there was some place you could turn to also...
You have a lot going on in your life right now, but you know, I give you credit for pushing yourself the way you do...overdoing it, no, but I think it is so much better than what others would do, which would be to just take it easy and do nothing much at all...it is so much better to remain active, even when you don't want to...it also gives you a healthier state of mind....just don't over do...
Don't let yourself think things when it comes to the nodules in your lungs or you will be on the edge all the time...you kept your faith before, just keep going with it...you will be on my prayer list as before, and I will continue to keep you there...the same goes for the condition with your ovaries..I'm sure you are going to be just fine there as you were with the other side before then...it's easy to let one's defense down when so many things seem to hit at once....your strong, you just keep it that way...
You keep me posted as to how the test results come whenever you may get them and I will with you....you have a wonderful weekend, let yourself think all good thoughts...take a deep breath and go on from there....
Please know you are in my thoughts and prayers....stay strong...love, J
Just checking up on you to see how your doing with treatments. You have been on my mind and in my prayers as always, so thought I'd pop in and see how things are going.
I called a Nurse today who is a specialist in the MAC infection at a highly rated facility. She highly recomends I have a serious talk with my Pulmonologist reguarding starting treatment for this. Of course she recomended me coming there which is thousands of miles away, and thats just not possible. I called her because all the others who have this infection that I talk with have been on treatment. Being the fact you have a better chance of recovery or at least slowing it down with aggressive treatment. So now I guess Im going to have to question my Pulm Doc as to why she feels I don't need treatment at this time. The fact is IF she feels as it says in her report that these new nodules are benign, then I "assume" she feels its the MAC infection, so WHY NO treatment? The whole thing has me confused. I do know I don't need this to get out of hand. I have enough medical problems without that happening. So looks like I will have to ask her when I see her again next month for the re-scan.
Anyway, please let me know how your doing. Looking forward to hearing from you.
Take care my friend!
Stay strong, and God bless.
Annette
Annette, I can't believe you emailed me, as I had you on my mind since I came in this morning, but was out Thurs-Monday, and had so much to do when I came in this a.m., and never had a chance, till now....
You know that is an interesting point about why they haven't started you on treatment, especially with all of your other health problems...I would definitely ask about this also....Just knowing you could have a better chance of recovery from this by getting the treatment would make me second guess as to why treatment is not in the plan for now??? maybe you could talk to her before your scheduled appointment, do you think???
I've been fine, I went Monday (yesterday) for the cat scan, ugh, wish that was all I had to do was drink that stuff, but of course since I am allergic to iodine, they had to give me something different than the dye contrast they usually use, so I drank that barium and of course they have to do it along with seeing your large intestines etc,. if you know what I mean, not so pleasant, but I will just have to get used to it, as I will be getting a lot of these over the years....my white count is fine, so I can go ahead with the fourth treatment tomorrow of chemo, and the next day that shot of Neulasta to keep my white count up, so at least I am moving ahead....will find out about the cat scan tomorrow if all is ok when I see the Dr. before the chemo treatment....enough about me, how are you feeling from day to day now??thinking of you every day and as usual, praying for you also...take care and let me know how you are and if that infection you had on your trip is staying away and not coming back....hugs and prayers....J
Hmmm...must be that "E..S..P.." thing working..Ya think?..haha
It looks like I have to wait until August to talk to her about all this. Orignaly my appt was scheduled for July, and while I was on vacation I recieved a revised schedule and it was changed for Aug. Turns out she is on vacation the month of July so thats why the change. So I will have to wait at this point.
Something else I will do while Im there is get a disk of all my scans. Right now I only have a disk for scans up to the point of surgery, so I will get an updated one, that way I can have ALL the info I need if I end up having to look for closer Doctor who specializes in MAC infection for treatment.
The infection in my implant seems to be GONE, which is a good thing. The incision is closed now, so I don't think it will rear its ugly head again..
YUK, that barium stuff is nasty, I sure dont envy you with having to drink that. Unfortunatly it's one of those things you have to do at this point on top of everything else. Good greef! Soon all this will all be over my friend and you will be feeling better. Your spirits sound wonderful and that will get you through all this! So happy to hear you WBC are staying Up!..Sounds like the neulesta is working!
Please let me know how your CT results come back tomorrow. I will certiantly continue praying for you as always!
So good to hear from you!
Take care, and God bless.
Annette
Hi Annette, how are you doing today??
Thought I would let you kow how the cat scan went...ithe Dr. said it looked great...I did have some clear fluid built up behind the one lymph node he removed and did a resection on, but that was normal...I guess there was a channel there before the surgery?? anyway, it will take awhile for this to form again ...he examined me also this time and all was fine, and so he said to continue onto my sixth treatment, and hopefully that will be it...so, I have two more to go through....of course I will have to be coming back for future cat scans all the time from now on after the treatment...so that's the news I have....went for chemo yesterday, and they had me hooked up to the IV by9:30 A.M. and the pharmacy usually brings up the chemo drugs from the fax they received the night before listing what is needed and for what patient, well, they had everyone's but mine...it took until 12:00 to come back up with the two they use for me...nurses were not pleased let me tell you...I sat there hooked up until then, and then it was after 4:00 before I was out of there...missed work, as I usually am back by 2:00, and they said not to bother since it was so late already....whew! long day!!...anyway, go for that shot of Neulasta today that builds up my white cell count...know the side effects will be hard to go through again, but it did the trick, it brought up my count beautifully this time, so I have to continue...whatever it takes I say, right??? well, I guess that's all the news I have on myself...anything new with you?? I hope it's good news....am leaving soon for the shot, but will be back tomorrow all day....take care Annette and God bless....J
What FANTASTIC news! Praise GOD! Thank you so much for the update. THis will be over soon my friend, and you can really get started living again! This news has made my day...Thanks!
SOunds like someone was'nt on the ball yesterday with making your chemo and having it ready. I do know it takes time to prepare, I used to work for a hospital pharmacy as a lab tech, and remember them having to prepare the chemo for patients so many hours before they needed it. So someone dropped the ball. But glad you were able to get it done yesterday dispite the delay, it sure does make for a long day! I sure hope work did'nt give you a hard time about it as it was out of your control.
SO happy to hear the shot is working with keeping you WBC's up! That can such an issue with chemo, and patients being able to continue treatments. THat's great!
I'm doing ok thanks. Just waiting for a couple of appts to come up. I have one the 18th of July for social security, and one with the GYN the 24th I think it is. THen seeing my Neuro the 5th of AUg., and back to Mayo the 13th. My life seems to be one Doctor's appt to another at this point. But the GOOD news is my boys will be coming home the 19th of this month! They are flying in to Tampa airport, so will have to take that 600 mile round trip to get them, but will be SOOOO worth IT! Life is so much better when they are here! So I'm really looking forward to getting them home!
Won't be long now, and this will all be a thing of the PAST for you! Keep up the good work!..Keep the faith my freind...Take care and God bless.
Annette
Annette, yes, I was relieved to hear the news so far...I will have to come back like I said for a long long time for future cat scans...there was a woman there in the chemo room that was talking to me, and she said she has been fighting this for 12 years now, and they keep her "maintained" and she is thankful enough for that...she asked me was this my "first round", I thought she meant was this my first chemo treatment, so I said no, this is my fourth, but she said she meant is this is my very first round of treatments I am getting, and I said, well, yes, and she said she had the same years ago, but it came back and here she is fighting now for 12 years....I know this can recur, but really brings me down to hear this , and it's not the first time, oh well, I will just keep praying like I have, I have God to lean on and my wonderful family....
Please keep me posted as to how YOUR appointments go, ok Annette?? so glad to hear your boys are coming down to be with you!! that's terrific!!staying, or visiting??? You stay strong ...love and prayers...J.
Hi Annette...doing ok...fatigue comes and goes..just when I think that I can't do much more, I perk up!!! .....fighting bladder infections now (which has always been my "achilles heel".... from the build up of the chemo now ) am on medications for that, and believe that the mesh they put in me is not holding up.. well, they were afraid the chemo would do a number to it and it is...nothing they can do right now until treatments are over and what they will do I don't have a clue until I see the Dr...don't know if I really want to know right now anyway (ha ha)...but really, I'm doing ok...chemo again next Wed...my 5th...so I am getting closer!!
Now, how about you?? You haven't had any of your appointments yet, have you?? wasn't the pulmonary one in August?? how have you been feeling?? How is your visit going with your sons??
I will let you know how things go next week...I have lots of questions for the Dr. before the chemo treatment starts....
Take care Annette...my prayers and thoughts are with you always....J.
I'm glad to hear you at least get some relief with the fatigue with the "perk up's". Your right you ARE getting closer to the end of treatment and the best way to look at it for sure! Please let me know how your Doctors visit goes.
I'm doing ok , hanging in there. I have my GYN appt with inturnal ultrasound (for my ovaries) Thursday which the Doctor herself does, so I will get results right there which is good. I hate the waiting game when it comes to testing like that.
Then I have an appt with my Neuro the 5th of August.
My Pulmonary appt. is Aug 13th at Mayo, my Neurologist has been trying to get a local Pulm doc to see me so I wouldn't have to travel so far, today I recieved an appt with one, so I called my insurance and low and behold he is out of network. I'm not going to pay out of network fees with a local doctor. So I canceled that, and called the neuro's office and gave them three names of Pulm doc's who are IN network will be interesting if any of them "take me on"! The last local one I went to told me to consider myself "married to Mayo clinic" it was too complex for him, handed me ALL my records back and that was that. It's obvious I would go to Mayo(even thou they are out of network) if I ever needed anything done that requires sedation, but for CT scans or x-rays there is no sence in traveling 600 miles for. I want to go to Mayo for this one anyway so I can get a disk of the last two CT scans and reports so I will have all the records.
My boys are fantastic! It's great to have them both here! The weather has been SO hot, in the low 100's so breathing is tough out there, so have really been spending most of the time in the house. They haven't complained YET...which is good! So far so good. I just wish I could do more with them. I was hoping to take them to Busch Gardens(thats a 600 mile round trip) before my oldest goes home, and before my youngest starts school(he starts school the 18th), NOT sure how that will work out with all these Doctor's appts but we will see. I just won't mention going until I know I can do it.
Anyway, know I have continued prayers for you!((((((Hugs))))))) Take care, stay strong, and GOd bless.
Annette
Janet,
Hi Janet well I went to my GYN appt and the ovaries still have cysts on them but they appear to be "simple cysts" which is good! However they NOW they have found something in my left breast! Because I can't have a mammogram because of the cardiac implant they are sending me for a bilateral breast ultrasound on Monday the 28th. I'm not going to get all worked up about it at this point until I have all the facts here. It could simply be scar tissue left over from the cellulitis infection I had in June with the cardiac implant, at least thats what Im routing for. My Aunt is a breast cancer survivor so there is a risk there, as well as a kidney cancer survivor so better to be safe than sorry right? So I will be going Monday afternoon for that, of course I won't know anything until I hear from the Doctor and when that will be I dont know.
So thats the scoop at this point, I will let you know what they find.
Take care my friend. God bless, and continued prayers.
Annette
Dear Annette, you are right, do not get yourself overly stressed over this, please...When I was getting my mammogram about two years ago, they found something also, and I had to go have a breast ultrasound done, and the surgeon was right there to read it no less...it turned out to be fibro-cystic tumors (benign) , (I hope I have this name right) which I have a lot of (they had my history, but I guess they had to be sure)...please, please, don't get upset....I learned my lesson, and you will be fine also....just take a deep breath and put your mind at ease....all will be ok...it seems logical to me that it would be the scar tissure with what you just went through, I know I'm no Dr., but that's how I look at it....I will pray for you as I do every day...do not worry, ok?? hugs and prayers.....J.
(So glad the ovaries were ok...what a relief that had to be!! wonderful!!!)
Let me know on Monday wht is going on with you, ok?? but like I said, all will be fine...)
Annette, have not heard from you, know you went to have an ultrasound on Monday, please let me know what is going on with you....
Have been in and out of work with repeated bloodwork as platelets were low, and had to keep going for repeated tests until it came up by itself so that I could get the 5th treatment, which I did, so sorry I haven't gotten back to you until now....
Please let me know how you are, I am very concerned as I haven't heard anything from you.....love and prayers....J.
Good morning! SO sorry to hear your blood platelets are giving you trouble, but so glad to hear you were able to have your 5th treatment! My memorey stinks as you know and I'm trying to remember how many treatments they were planning for you. It's getting CLOSE I know, but how many more at this point? I know it can't be soon enough for you, but you have comes so far and it will be over with soon! I will continue to pray for you as always my friend, your an amazing STRONG young woman!
I did get my ultrasound but wasn't until Tuesday, there was a "misunderstanding" with the Doctors order, but thats another story. I finally heard results yesterday. It is felt to be "scarring" from the cellulitis infection I had in June thank GOD! I am going today to sign a release to get a copy of my report. I want to have that when I go to Mayo the 13th incase anything shows up on my chest CT scan I will have that report handy.
Take care my friend, Stay strong, Keep the FAITH, and GOd bless.
Continued prayers and Hugs coming your way!
Annette
Annette, whew! I feel so much better hearing thsi!! how relieved you must be!! Oh, thank God.....I tell you, prayers sure do help!! Yes, good to have that report ready in your hands when you go to Mayo....you don't know how relieved I feel for you!!!
The planned treatment for me was 6 treatments, so I have only one more to go!! I am having the strongest dose of each drug they could give, and my body has accepted it...I'm not saying it was a breeze, but I know others have had a lot of trouble getting through the treatments and had to be changed to different ones from time to time because of such bad side effects, so I thank the Lord I am getting through this....
I will have to go back every three months for examinations, ugh! and blood work, and twice a year for scans...I know right after my sixth treatment my Dr. has ordered a PET scan and then 6 months later it will be a CT Scan...I think the PET scan is when they inject you with this nuclear stuff, and it can detect any microscopic cancer cells as I believe the cancer cells adhere themselves to this nuclear dye or whatever you call it, and the normal cells don't...(I may not have this exactly right, but close enough)...they think my platelets might be giving me some trouble again, when the last treatment is ready to be given, as it will probably be off again, but they will keep checking with the bloodwork, and can wait up to a week to see if it will come back up, and then an injection may be given, or I may have to receive some platelets if things don't work out...so much toxicity in the body then, can see why things are knocked off kilter for awhile...my 6th treatment is planned for Aug. 20th, so we will see then...taking off for California next Wed, and flying back the following Monday (the 11th) will be back to work on Wed. the 13th...do not like flying, my sister laughs at me, but it terrifies me, but I made it to Texas and back, doesn't help that California just had an earthquake either, ha ha...(L.A.) just where we are going also, where my sister's son, my nephew, lives...oh boy....
Boy my Dad would be rolling his eyes at me today if he was still around...he was a pilot and so was my mother, (small one prop planes) and believe me, I didn't like it any better then, and we always were flying, not that I had any choice back then!!!
Well Annette, I feel so much better hearing your news, I was so worried when I didn't hear anything from you!! Please know you will always be in my prayers, daily, always.....my love and prayers are with you...J.
That's what I was thinking you had ONE MORE to GO, Thank GOD! Soon you will be looking back at all this and be totally amazed at how strong you are my friend, and having God and keeping the faith can get you through!
Remember when we chatted about how these trials in our lives really puts things into perspective? Makes us look at what is really important in life ect...Life is for LIVING, LOVING, ENJOYING, SMILING, and LAUGHING. I believe these trials are there to remind us of that. (I still have to keep reminding myself of this from time to time, but I'm getting there!) I have a wall plaque on my wall and part of it says "Dance as if no one were watching", well I havent gone to that extreem but, my long road trips back and forth to Mayo clinic brings out an "interesting" outlet! I will crank up my radio and sing to the top of my lungs! Thank God I'm ALONE when I do this, and there are some advantages to being DEAF in ONE EAR, hahaha...but its such a release. I can only imagin what other drivers think when they drive by but I find myself not caring what they do think, I haven't caused any accidents so it seems to be harmless...haha. Now if my boys are in the truck with me I have to "TONE DOWN" a bit, they tend to get embarassed for some reason...hmmm I guess I'm not ready for public viewing...YET!..haha
Anyway, my point to telling you all this is in hopes you will take every bit of advantage of this vacation your going to be taking. Spending the time with your sister, and nephew...ENJOY it, LAUGH, SMILE, LOVE, and heck if you have it in you DANCE my friend! (Just don't dance in the airport that might draw securities attention too much! ..haha) OR, Stand on the beach, reach high in the sky, and take the biggest breath you can..INHALE LIFE! You know what I mean my friend...Let it ALL hang out within reason of course! DO what makes YOU happy!
I look forward to hearing from you when you get back! As always, continued prayers my friend, have some fun, take care, and GOd bless.
Annette
Annette, God bless and thank you for all of that...I intend on doing every thing you mentioned and then some!!! was going to answer you on Friday, but that was our closing day in Accounting here and we were going strong until early evening!!
I will email you next Wed. when I am back!! you take care of yourself...will talk to you soon!! hugs and prayers....J.
Re: what to expect after cystocele operation 
