GrmaDee's Bits of Things

Started a journal after going out to U of M Cancer Center for the melanoma. Going to publish it here, well most of it anyway. Will be mostly me and absolute terror for now, but I figure if I'm going to make it public I might as well give you the whole, ugly truth lol. And, please remember this is MY take on all of this. Not everyone will be the same even givien the same diagnosis. Still have research to do on this and if anyone has info or experience or would like to contact me, please feel free to do so.

June 13 - The day it all started......Had to call Dr. for a blood pressure check anyway so figured I'd ask him about the "growth" on my ankle. That night, found a lump at top of same leg in groin area. Now I'm scared.

June 14 - Made appointment for next day. As soon as I mentioned the lump in my leg I got quick service.

June 15 - Dr VERY concerned about ankle but moreso about lump. He's afraid it's Melanoma and has metastisized up into lymph gland. His office making appointment with surgeon I've been to before. Now I'm really scared.

June 16 - Have appointment on June 21st with Dr Beaudry. Seems like a long time but not. This is not going to be easy.

June 21 - Dr Beaudry does a core sample of ankle to be retested and wants me to have a CT scan of lump. Results in about a week, hopefully.

June 22 - CT Scan scheduled for Thursday, the 24th

June 24 - CT Scan - drink 32 ozs of apple/tea flavored icky stuff and wait an hour. Go in for test that takes maybe 10 minutes? Sheesh!
Have family reunion this weekend so hopefully I will feel like going - starts tomorrow thru Sun or Mon, depending of whether daughter wants to stay up there or not. We will see.

June 25 - Feel a bit lousy but going anyway! Trailer is packed, roomie drove me over to daughter's to put my stuff in the trailer and truck and we're off!
Arrive at cousin's house in the early evening. Daughter and grand son get all the tents set up, I just sit and watch and cry and talk to those that come by our camp site.

June 26 thru 28 - Reunion is a blast! Had a great meal and tribute to Aunt and cousing that we lost in the past year. Group photo. Listening to stories from relatives that I hadn't heard before - amazing after 27 years of reunions! lol Monday I had a "spell" which delated our departure, but we got home ok. Had a great time! Have a feeling I'll appreciate it more in the coming weeks.

June 29 - Call Dr Beaudry's office for results and they tell me he's not there and will probably call me tomorrow. Now I know it's not good news - if everything is ok they tell you. If not they have Dr tell you.

June 30 - Dr Beaudry calls and as I suspected, not good news. Melanoma for sure! Have to get appointment out at UofM Melanoma Clinic and get started on taking care of this. Try to do research on internet but too upset to be able to absorb it, and crying too much to be able to see very much lol I'm such a baby about this kind of thing when it's me. I've never had anything major, other than the M.S. and that didn't require surgery so it's just a thing! Not going well for me at the moment.
Could not get hold of PCP to make appt for me so I called and made appointment - for July 7th. Have to run around and get forms signed so slides, etc can be forwarded to them before I go out there.

July 1 - Get all the forms signed so everything can be sent to Melanoma Center at U of M Cancer Center. People! I'm sick! I don't feel well, I have lump in my leg and I have to do all this running around? Jeez! There's got to be an easier way! Not fair! Not easy! grrrrrrrr

July 2 thru 6 - Pretty much a blur......couldn't get any research done. Daughter's birthday on the 4th and she's just been given this plate of "Mom's got Melanoma"! Crap! That's not a great gift! For someone that is usually pretty strong, I'm a wreck! The 7th can't come soon enough!
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July 7 - This was a day of days.......not in a good way.
Went to Cancer Center/Melanoma Clinic at U of M Hospital complex. First, they check weight (not too bad), height (5'2 3/4" as I've always said it was lol) and blood pressure (through the roof!) Then, the real madness begins.
Am led back to an exam room, which of course was expected. Have to change and sit on table and wait. First person we (daughter went with) see is Resident Dermatologist. She explains all kinds of things, does a full body check for other moles possible melanoma etc. Then, she leaves to get Head Dermatologist and track down a surgeon, which I thought I heard wrong as surgical consult wasn't on the agenda for that day.
Dr. Schwartz comes in. She also goes over all kinds of things, does a head to toe body check then in walks surgeon. At this point I have been up and down off the table twice, my head is spinning with information (should have had a recorder), haven't eaten and I'm feeling slightly dizzy and a bit nauseous.
Dr. Reese, nice guy, liked him right off. Then he started about what the surgery would entail, about skin grafts (artificial then permanent), removal of entire lymph gland system in top of leg and what can go wrong after surgery. At that point, my head was spinning, OH and I had been told I would have to have a needle biopsy of the lump in my leg which I totally dreaded, and I simply stated I felt like I was going to pass out and just laid back on the table! Which gave all 3 (resident, head and surgeon) a real start. They were taking pulse and trying to calm me down all at once and surgeon was apologizing for upsetting me. If I hadn't been so traumatized I would have laughed, and eventually did!
So then the biopsy, which I won't go into detail but even being numbed it hurt and I just cried and cried and laughed and laughed, as I'd started to do in the exam room. Couldn't get out of there fast enough when done!
Everyone was very nice and kind and understanding but that's of no use to someone like me who was panic stricken!
And, after being told I wouldn't be able to walk on the leg for about 3 weeks, then had to have surgery for permanent graft (this is on ankle) and it would be another 3 weeks, well just kick me in the head and keep me out then. Have no idea how my M.S. is going to react with all this, have no idea how I'm going to use crutches when I can fall down almost with a walker using 2 legs! Crutches and 1 leg? I don't think so people.

July 8 - A pet scan was set up for me for the 13th. Have no idea what it is, never had one, not sure I want one but have to have it so there. So, call to PCP for a couple valium for test as if you are claustrophobic they recommend it. Yippee

July 9 - Son and brother's birthdays. Sent wishes to both. Called Dr for script. I asked for 2 he gave me 6 lol. He knows me so well - I'll only take what I absolutely need and nothing more lol Had a melt down today. One of many I'm sure but felt lots better after. Friend came to do shot and brought flowers! And that was really nice! I don't get flowers! lol Fell apart again when I went to bed then this calm washed over and I knew it would be ok. Still will have moments I'm sure, but it's going to work out. Slept great!

July 10 - Feeling much better about things. Still terrified but not falling apart so much. Roomie gone for the day so have lots of time to myself and it was just what I needed.

July 11 - Quiet day with an interesting evening - grand daughter came over just to hang out. We were outside and a duck with numerous babies walked across the street to get to the pond. Several of the ducklings could not get up the curb! So, grand daughter went to help them without touching them. And they weren't having any of it! Then a neighbor came by to help. The had to pick them up and put them on the grass! Except for 2 - 1 for each of them. They just would NOT stay on the grass! lol Even took them down by the pond and they ran back up the hill! lol Took several minutes, but finally they all went into the weeds where the others had gone. Whew! Was rather funny though lol.

July 13 - PET Scan day - Well, that was almost a bust. Did the pre-test thing no prob. Get in to do test, they truss me up and it's a no go. No way. Valium didn't do me a dang bit of good! lol So, I promise to keep hands in and be still and they take the truss off. Whew! So much better! And, I didn't move - was a good girl lol. And, the pics came out well and, again, outta there!

July 14 - Results of PET Scan show nothing they didn't know about. But, because of one particular mole having a slight reaction to the radioactive stuff, I have to have it removed. And it's right in the center of my, um, rear! This will be fun huh? That will be the 23rd of July! Sheesh!

July 17 - Quiet day. Nothing going on. Get phone call from ex daughter in law - she and her mom were out in the parking lot! She lives in Texas! I was so excited! It was really great to see them and have them visit for a while. Called daughter and she came over with 2 grand daughters and her hubby. We had a great visit! They are coming by on Wednesday so we can go to lunch or dinner, depending on what time, before they head back to KY where her mom lives. Really a nice surprise!

July 18 - This was inserted searately in a previous post....Just when you think life is finally settled and you know what direction you are headed, BAM! There's a new twist to set you on your ear! or in this case, my rear! lol

A simple test of a mole on my ankle has turned into a major upcoming surgery on that ankle and removal of lymplh system at top of let.......that's just the beginning!
I have, am and will continue. to learn more than I ever wanted to know about Melanoma, how to do checks of my own body, watch/"listen" to my body for warning signs and so many other things I can't even begin to imagine.
Siffice it to say, being with the group at the Melanoma Center at University of Michigan is a God send/blessing that I thank God and my Drs for - at least so far. lol
Minor surgery on the 23rd this month, major surgery on the 18th of August - unless something opens up sooner.
Now that we've been thru the initial infor/diagnosis/shock/tears phase, ready to get the process under way so I can get healed up and work on the cure for this nasty crap.
Cancer - one thing we all fear. But, once diagnosed there's only one choice for me, get busy and get better!
Updates to come as available, but for now in a holding pattern and I hate that! But, will rely on the powers that be to point me in the right direction and toward the cure.
More later, but am going to try to get creating in the meantime......there's too much fun to be had still! lol
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July 19 - Went on one last Casino trip before everything gets too crazy. Had a great time, came home broke lol

July 21 - Ex daughter in law and her mom came, picked me up and we went for a nice, long leisurely dinner.Was really nice to just sit and relax and converse. Glad we had the time, it's been far too long!

July 22 - In a bit more pain. I've been doing far too much walking I'm sure. Lump has grown to almost tennis ball size - ick. Of course, everyone has vehicles that are harder to get into than just a regular car so I'm sure that has added to the problem. lol Oh well, if I want to go have to get into them and that's just the way it is.

July 23 - Back to U of M Melanoma Center, MOHS clinic for removal of a mole on deriere lol. It's not funny but it is. Anyway, that was pretty much the easiest thing I've done lately. Getting situated on table was a bit of a chore but not too bad. Dr assures me it does not look like melanoma but will get results in a few days and then we'll know for sure. Stitches come out in 2 to 3 weeks and can have that done at PCP's office.

July 24 - Had trouble sleeping - figured it would be difficult. Between lump in leg and pain in the butt. Managed to get a little bit. So, just really tired and sore and going to lay around next couple of days.

July 26 - Made appt for stitches to be removed on the 10th of August. That can't get here soon enough!

July 27 - Let Dr at MOHS clinic know about appt with PCP for stitch removal - have to make sure everyone is aware of everything.

July 28 - Nurse called from MOHS clinic just to check on me, make sure they had info right about appt for stitches to be removed, etc.

July 29 - Dr called to let me know the test results were negative - YAY! So, I'm good. She saked about the lump and when I told her she said she would talk to Dr Reese to see about getting things moved up.

Aug 6 - Quiet week so nothing to report there. Roomie left tonight for visit with family out of state. He will be missed but it's just as well. Gives me a chance to really fall apart if needed. well not if but when lol

Aug 7 & 8 - Very quiet around here, except for when I fall completely apart. Will be so glad when this is all over with and I can go back to my normal falling apart once in a great while just because, not because of upcoming surgery! grrrr lol

Aug 9 - Had Pre-op appt at U of M Domino Farms. Nice place! Once again, rained, as usual lol. Once things got started, I was once again overwhelmed with information and being told I may have to do things I truly do not want to have to do! It's not the surgery that is scarey - it's the recovery and after care that is really doing me in! And, after this appointment it's just confirmed! UGH! Anyway, got instructions on when to stop taking what before surgery, how to prepare physically with stuff to use in shower night before and morning of, what not to take medication wise that morning and when/where to call the day before to find out when I have to be there for surgery. Will really be glad when all of this is done and over with! Seems like it's been forever I've been waiting to get this done. And the longer it goes the worse I"m getting - mentally and emotionally that is.

Aug 10 - Got stitches out and all is fine! YAY! PCP Dr was very happy with how things looked. Still not happy with the original lab that missed the melanoma way back in September 09. Took my BP and, of course, it was high again - not nearly as bad as it's been over the past couple months tho. He instructed me to increase BP meds by 1/2 each night. Will have to call surgeons nurse to let her know just in case that might cause a problem with surgery. Shouldn't. I can take that pill up until morning of surgery, so should be fine. But they need to know for after. They supply any/all meds etc I need so they have to know about the increase.
Now, if I could just get my inconsiderate upstairs neighbor to stop stomping, slamming things and playing music too loud at 2 or 3 a.m. so I could sleep it would be SO wonderful. Will have to contact manager about that I'm afraid. Hate having to do that but at this point my health and well-being is paramount.

Aug. 18 - had surgery which went extremely well, according to all involved. As there is a long process of recovery, rehab, another surgery, more recovery and more rehab, I will attempt to update as possible. As of this writing (Sept. 12) I am in a Rehab center. Computer time is somewhat limited so will bring everyone up to date as time permits. Suffice it to say, I've learned what a big baby I am! lol But, not going to beat myself up for it as this has been a really long, painful, terrifying process for me - no excuses, just the cold hard facts. More later.

Aug. 19 thru 22 - stayed a U of M Hospital could NOT stop crying. Started thinking I was going crazy - for real~ lol

Aug. 22 - Just before I left the hospital, one of the nurses found a discrepency in my meds - I was having difficulty "going" - not unusual after a surgery, however it was also discovoered that my bladder control pill was also still being administered~! lol Well, got that problem solved fairly quickly which solved some others also lmbo! Going to Hearland today. Hopefully all the crying and anxiety will stop once my rehab starts? Sure hope so. This is driving me a little crazy at this point.

Aug. 22 - This is not going to be fun. No matter how nice the place is, how nice the people are, a nursing home is not going to be my cup of tea or coffee or anything else for that matter. Just getting settled has been very difficult. Can't stop crying! I know I'm a cryer but this is crazy! Will it ever stop? After the "assessment" upon arrival, assignment of room and bed etc, I'm truly not liking this at all but as there is not much I can do about it, guess I'll just have to deal with it huh? And, again, just crying myself to sleep.

Aug. 23 - Met my Dr for while I"m here - Dr Montoya. Seems to be ok but, again, everything is a blur, jumbled up and I'm having a difficult time getting thoughts straight, can't remember to ask things that need to be asked and I know something is amiss with me but can't put my finger on it as of yet. Guess it will just have to get straightened out later........as I have no clue what could be wrong. Surgery was traumatic but this feeling is just not right as of this moment - hasn't been for a week now - and still have not figured out what the problem is.......

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*For those that may be wondering, it is now the 21st of September, I am still in the Nursing/Rehab Center and trying to play catch up on blog entries. Due, to meds mix up a/k/a probs, etc, things are a bit disjointed and may be out of sequence but trying my best to catch up here lol.

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Aug. 24 - Not sure it it was 24th or 25th, but it was discovered that, due to an error in my meds at the PreOp Appt at the Plastic Surbery Clinic, I have not been receiving klonopin/clonazepam (nerve pill). While I do not take that much of this medication, it is certainly a withdrawal issue matter and, of course, a nerve problem as I have not had this medication since early morning on the 18th of Aug. pre surgery! This mistake in the meds elimination was caught and, I was told, corrected on the day of the PreOp Visit! So, now the question is, why bother with this visit if the important information needed for the patiens' well-being is not passed along to the hospital? Why can they not use the information givien at time of first visit to any part of the system and pass the important info along? Who dropped the ball, why was it not corrected when caught and how many others have gone thru similar or perhaps even worse situations as a result of this issue? Definitely something to be explored later when I am in better health, better state of mind and better able to do what is necessary to contact those necessary to see that this does not happen to someone else........Needless to say I am now angry, more terrified than ever and praying for a quick return home.........

Aug. 26 thru Sept 8th - Since I was not able to get to the computer to update this daily, much of what I would have put here has been lost, at least until my memory clears and allows me to remember, if it does lol. In any case, there have been a few other problems since I've been here - mostly administrative, only a couple of aides not able to perform their duties in a timely, efficient and mostly pleasant manner. For the most part, everyone has been really great. Once the meds problem was caught some other things came to light such as the fact that I was supposed to get a newer bed and a different mattress to help stop or cut down on bed sores. Well, I'm now on mattress number 5 and, while it's not great it's better that what I had - I'm not sinking into the bed frame! lol The bed issue, however, has not yet been resolved. I will be addressing that with whoever is on duty tomorrow as I've been told reporting it during the week is much better than trying to get it resolved on the weekend. So, hopefully, that can get straightened and I'll finally be able to sleep well? One more adjustment on the new mattress I have to see if the lowest setting is more comfortable. Haven't had a decent nights' sleep since I've been here and that's been over a month now! No wonder I get weepy and crabby and stiff and feel so exhausted all the dang time! Sheesh! After meeting with supervisor for the facility I can say that even though everything has not been a "bed of roses" they at least try to meet patient needs and keep us happy. Only makes sense right? So, hopefully this week will bring good changes for sleeping, good news for therapy (being able to put weight on both legs) and a better idea of when I can go home! Some here are really great people but I want to get away from them as soon as possible!. lol Don't like having to rely on others to give me my meds, meals, etc and take care of me. Will be very happy when I can get it done on my own! Praying for that to happen quickly and very soon!!!!!!!

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Oct. 3 - Since there has been so much time that has passed and I have not kept up, will try to compress it all here and go from this point. Seems I'm not as strong, sure or upbeat as I always thought I was. Unable to get through the end of the day without a pain pill and a valium! And I hate it! It's not much by meds standards I'm told but for me, it's a lot and it's not what I wanted to be doing for my recovery. After the first surgery in Aug, I was able to hop on one foot with a walker, now hopping is not an option as my back has decided to do it's thing which is to stop me from doing mine......not nice at all. There has also been a new development with both legs and feet being swollen which is now becoming painful and not helpful at all. The restrictions, the panic, the helplessness, none of which you are warned about or even given hints about are the worst. The pain is not awful but it's definitely a nuisance. The panic and fear due to lack of ability to move freely is absolutely terrifying for me! Even having muscle cramps is enought to throw me into a crying frenzy or epic proportions - even for me! lol I can only hope that, since the graft is now done and healing very well according to the nurses, and I was able to take a few steps on this past Friday with a walker, the rest of my therapy and recovery should go more quickly. Just praying that my MS doesn't decide to throw a monkey wrench into things and make it more difficult. In all honesty, there was no way to avoid having this done once the Melanoma was diagnosed, but please all - do not allow it to happen to you or anyone you know. It is an ugly, painful, terrifying process and the fewer that have to go through it the better!

Oct 17 - Having spent several (many) days weeping, crying, feeling sorry for myself, feeling trapped and just plain hopeless AND interspersed with days of hysterical laughter, touched by fits of joy, glee and absolute stupid hilarity, there is really not need to even try to begin to go back and try to catch up on all the days I've missed here. Some days there is just no use in trying to fill in the blanks as so much is lost - like it or not it happens. And, other days there just is not enough time or enough left over energy! Yes, it is rehab to help build up muscles,, tone others, strengthen or awaken others, but it is also extremely draining. Fatigue from the physical aspects alone is enough. Throw in the M. S. factor and it's fatigue times 100. And the only relief is Ultram, Valium and sleep lol. I'm not promoting drugs in any way here but, if you are trying to get well after all of the stuff like I've been through, bite the bullett, suck it up and take the dam drugs! They really do help! I have been fighting them as much as possible and find that the more I fight the more all the problems win! So, from now on I will be taking them before things get very bad, in fact before pain or anxiety has a chance to set it much at all - every day will be prevent to persevere. Have only done this for a couple of days but, am feeling SO much better already!
Physical therapy has gotten tougher as my back has refused to cooperate much at all. So, taking the pain meds before I start has helped a great deal. Am able to walk 3/4 of the way around the room which is rather large. Since lymphodema has developed I am now having to do some massaging to try to get the swelling down. Not working too well so far but a little. And, since I have a hematoma near the top of the incision site for the lymph grland removal, my physical therapy has been slowed slightly until that is cleared up. All in all, it's still quite a learning experience and not things I ever wanted to learn but since I am learning them this will hopefully help others. There are so many variables for each individual, I'm healing very well and the problems thus far have been few and minor so I'm told, so am thanking God and my friends and family that are pulling for me in all of this. Will be keeping you informed still as to my progress as it should, hopefully, be better now. I've been asked several times in the past few days if I've been given a time I can come home and as I haven't, I'm wondering if they know something I don't? lol In any case it's lunch time, company here and I"m done......more later