Even if you beat Cancer - it never lets you forget it was there!

 Well, What a year!  

As most of you know I lost the greatest Man I've ever known December of last year.  While at his funeral service, my best friend said she thought I was talking funny.  I blew it off telling her I was sure it was just stress.  As amazing of a job my surgeon and radiation Oncologist did with my treatments, I felt so blessed to have had minimal side effects as I knew the risks of this Cancer and treatment because 15-20 years prior I had worked with a head and neck surgeon and mostly all we did was Head and neck cancer and I saw first hand the ramifications of these surgeries/treatments and mostly it was bad.  So Blessed I was!

 

  Yes it has been 15 years since my last post as I had moved on with my NEW Normal which I was completely satisfied with even though there were many challenges as some of you can attest to. DO NOT try and do the Heimlich maneuver on me lol I am spasaming,  not choking 😆, I learned to manage them all so much so that I pretty much forgot of my life prior to cancer.  So here comes February and I am starting to notice a little trouble talking, which was really only annoying at that time when I had to yell at Rob.  I chalked it up to stress still because so much has been going on in our lives this last year I just kinda blew it off.  Then in March it seemed to be getting worse and i decided it wouldn't hurt to take a trip to my PCP and just get his opinion.  He had his back to me and heard me say I've been having a little trouble with my speech and thought I would see what you thought ... He turned around and looked at me and said are you having a Stroke???! I laughed and said IDK  you tell me - your the Doctor.  He did an exam and out of an abundance of caution, since my dad had just had a massive stroke, he decided to send me for an MRI.  

 Well what came back I was NOT expecting at all..  There was a "fullness" in the old area of Tumor, a Parotid/Lymph Node Mass, A brain Mass, Many Microbleeds and something else going on in the brain i cant remember.  So he felt at this point the Cancer issue in the Head and Neck is were he wanted to start as they weren't positive the parotid mass was on the parotid or a Lymph node with possible metastasis.  So First Surgeon was a Locum tenons military Doctor Really nice and knowledgeable.  Didn't think it was anything really but because there were no previous scans he decided to go in and do a biopsy of the area where the old cancer was..  Obviously I was a little nervous so I went up the Sunday before surgery and got prayed over and anointed ( hey Ill take anything I can get where God is Concerned) Hes got me and always has.  I felt an incredible weight lift at that moment and really haven't worried about it since (unlike my Friend and Mother lol)  Surgery went great he took extra samples to make sure he covered all the areas and I was back to work on Monday!  Biopsy results came back Negative Of Course!  So the next area of concern was the Mass on or around my parotid.  We decided to do a 3 Month follow up MRI to see if it has changed because to get to that area for surgery IS A MAJOR SURGERY and I was not interested and felt God had it under control.  He said he had a friend from Walter Reed Hospital that would be coming in as locum about the time I needed to be seen in Follow up and he did these big head and neck cancer cases so if it did change he would be there!  God always provides (cause honestly, and sorry - not sorry- I ain't too impressed with the surgeons Ive seen in this town.)  So I had my follow up MRI in August and two weeks later met with the Surgeon, another very knowledgeable Surgeon, I felt extremely at peace with.  

He felt that the mass had not changed and thought that the symptoms I was having was not related to what was going on with these two areas.  Great! now what the speech and swallowing was getting worse and now my tongue was pointing the wrong direction.  Memory issue has started with word recall and i'm feeling tired.  Obviously,  all these things could be I'm just getting old or just increase with time post Cancer treatment because all that started immediately after treatments.  So he said I should see Neuro.  And have speech therapy..Well when I called neuro.  Their first appointment was July... when i heard the lady say that I said oh you mean September, this is August... She said NO I mean July , 2026... Glad I'm not dying or anything lol... then The speech therapist called and said she had a referral for me to see a speech therapist but doesn't have anything available right now and would just have to call back when she did. That was August, Still haven't heard, That's the Springfield heath care system I know and Love...!  

 

In the mean time the surgeon from Walter reed called me back, FROM Walter Reed ( now THAT'S the healthcare I remember )   just to make sure I was able to get my MRI scheduled and an appointment made with him immediately following in March! I assured him I had and he asked about my symptoms and I said they seem to be getting worse, so he suggested going back to pcp in the meantime to see if he could push the neuro up and also call Neuro to see if they could put me on the cancellation list.  So I did just that.  My pcp felt I should schedule with a Neuro Surgeon do to the tumor and then we can keep the appointment with Neurology in July.  So he got me in to see the surgeon within a couple weeks ( Bless Him), Of course, my luck the appointment was made for 7:30 AM this morning - you all know how I LOVE getting up that early these days ( yes in years prior to CA I was definitely a morning person up at 5am, jazzercise, work by 7-7:30 ) but not these days. I get up at 6 but moving very fast is not an option.  

Anywho... God gave me another amazing surgeon who studied my MRI's carefully and talked to me at length about his thoughts on what was going on.  So apparently the mass is likely related to post radiation changes,  the mass has also not grown and feels it is not pushing on the brain tissue at this time.. I was like I thought it was hypoglossal nerve but the ENT said Nope not anywhere close to the area of tumor showing on the MRI... So Doc WHAT UP!   He gave me an answer I should have been happy with right No cancer anywhere.  However, the post radiation changes, he felt, I was having some hypoglossal nerve (Cranial nerve 12) Degradation.  ( basically its dying) as a result of radiation therapy from 15 years ago.  YAY ME!   

 

For the first time in all this i started to cry.. lol I said I would have rather you said  this is Cancer and we will cut it out and move on like before, but this ... This is only going to get worse, how am I ever going to continue Yelling at my husband if I can't move my tongue or swallow or eat.  Dang!  

But again God always gives hope ... he said that there has been good outcomes in using Hyperbaric Chamber treatment in this, yea ok great thousands of dollars I don't have... but he said Insurance typically pays for it - what can I say..  he never lets me down, he never leaves me... He is always there even when I Don't see or feel him. 

 So Peeps that is where we are today.  A referral to Hyperbaric - IF my insurance approves of course.  So the show goes on .. we had a great 15 year break, thank My LORD and SAVIOR that this was not a recurrence of Cancer but a life long continuation of the original treatment.  I guess this wont be the last of it, more junk will rear its ugly head but I am at peace knowing .. God is always Good and Always there.  

Thanks for always being there for me.  Until next time ...Keep on Keepin on as my Dad would say!  

Year to Heal

Well, it has been the year to heal. I have spent it mostly trying to mend. Gain weight, gain strength and get back my energy. It seams finally about 2 months ago my body all of a sudden just started to hold on to some weight and the struggle for that has been easier. I have hit the middle age spread (as my Dr. called it ) over 100 pounds but he is happy i gained 10 pounds since last visit. There is however this issue of some lung nodules he seems a bit concerned about.. He called me with the report Monday, and put me on the schedule for wed. to get a PET Scan and follow up immediately with him afterwards. Needless to say Rob and I cancelled work and off we went. I tell you this was the most stressful day we have had since this all began. Primary tumors are one thing, but mets is a completely different ballgame you know.... Well with a day of prayers and anxiety the news was good. No cancer showing up on the scan. I will now be referred to the pulmonologist. The best one in the city per recommendation of the two best docs I know... So Fri. a.m. will be the final piece of this puzzle and I can only hope for the best. Even though I am mentally prepared for anything and ready for whatever God has planned for me.

PET Results

Wow- Its been a fast week! Had my PET Scan today and the Doctor said he looked at it and Couldn't see a sign of anything!! Yeah! So they still need to get official results but he's pretty sure I am Cancer Free at this time. The best news all year! He is giving me some medication to help with the dry mouth because he doesn't like that I am still losing weight. Otherwise I don't have to see him until February. So unless anything changes... This is over and out! THANKS A MILLION to all of you that have prayed and supported me through this entire ordeal--I know I could not have done so well with out those prayers God does hear them and he has blessed me in soo many ways.

GOD IS GOOD! I LOVE YOU ALL!!!!

6 Months Post Treatment

Hello All,

Hope everyone is having a wonderful Summer. I know I am! It has been hot as you are well aware. So haven't spent much time outside. However, I am starting to walk outside everyday as my chesney has been put on a diet and exercise plan. Fatty! (mom's been slipping him too much of the food she can't eat) Had a GREAT time at Kayser Kamp. We went to a lot of play spots and pools trying to stay cool, the heat kept us away from our favorite spots. Also had the great blessing of getting to see my nieces almost every week this summer. They both made a point to come visit me and Caitlin brought Wil along on most of her visits. All the children in my life have brought me such joy! Thanks guys! Well to the news all of you have so patiently been waiting on ..... We will have to wait another week because my Doctor decided to go on vacation and I will not be able to see him until Next Wednesday. So PET Scan and FU has been put off a week. Sorry, but i am sure there will only be good news. I have been feeling Wonderful. Tired only now and again if I overdue too much which is not too often. And my taste is slowly coming back. My mouth is still dry ( I can now eat a half a piece of pizza with 2 liters of water) but we are working on that with acupuncture so that should come back shortly also. My weight is holding pretty steady, Thank God for ensure! (and that I can't taste it), My ear tube has fallen out and the hole has healed (no official diagnosis on that yet. But I feel like it is) and so far no congestion in there. So, that is a good sign. All in all I am truely blessed. I feel I have gone through the worst and have come out on the other side with very few problems. So, have a wonderful week and I will write after the PET Scan.

3 Month Follow Up

I went to see the doctor last Wednesday and I guess the good news is there is nothing to report. We are to follow up with him again in 3 months and He will do another PET Scan on that day. That is a scan that shows my entire body and lights up any cancer cells present. Amazing where technology has come. He also set me up for an appointment with a sleep doctor for a sleep study as I have had obstruction and quit breathing when I sleep for the last two months. However, I am not sure the point of a sleep study if there is nothing they can do. Guess they are needing a little extra money. Still really dizzy in the mornings it usually takes about 2-3 hours to get rid of the dizzies. Still not tasting much. Drinking my Veggies in the morning with protein powder. Then 3 ensures throughout the day and a sensible dinner. Usually ham, or chicken or a salad. Ribs or pizza. Experimenting trying to find something that is tasting normal -- not yet but soon I just know it!

Energy Coming back!!

I know I haven't blogged in a while, Sorry, Not really much to report. Which I guess is good. Things are running along pretty good. I have increasingly been feeling more like I did with energy and Just feeling like my old self. Rob always says " I feel more like I do now than I did yesterday" but I am "feeling more like I did yesterday than I do now" hehe. Which was much better than i do now. I can start to get a hint of the me I remember from several years ago before all this started to take over. And I am so excited to get more and more of those good days back. I have started back to exercise class, not going as often as I would like as it is causing some visual disturbances that last for about an hour after class if over, so i am taking it easy until after my doctors appointment next week. I am also waiting for lab results to come back, they rechecked my white count as it was running low the last time they checked it and they wanted to recheck to see if this is something we need to worry about or not. I am still not tasting much, I am living on 3-4 ensures a day and force myself to eat one solid meal. Have to get 1100-1200 calories a day down to make mom and dad, Rob ...and everybody else happy -- I must maintain my weight, which also means if I exercise I have to force down another 300-500 calories on that day. YUK! But I gotta exercise it is so good for so many things. Like healing. Also when I eat food anything other than my ensure, i get these lovely blisters all over the inside of my mouth and throat that last for about 2 days to 1 week and it annoys me. So my favorite thing to do USE to be eat. Now I am going to have to find another new past time. Hopefully exercise. But we will see how that works out.

We went home to Fordland this weekend for mothers day and had a wonderful time. I got to see all my family, even if it was for just a moment I was soooooo Glad I got to visit with them. Got to see all the babies, Abbye went to church with mom, dad, Rob and I and we had a wonderful time. ....My cup runneth over!

ENT Follow Up

I went Friday for my follow up MRI it took about an hour and then they gave me a copy of it to take to my ENT to look at. Rob and I opened it and looked at it over the weekend (like we can read it ) and I still do have my brains or something resembling them anyways.
We went to see grandpa on the way to mom and dad's since I haven't seen him in awhile and had a nice visit. Chesney was trying to eat the dead mouse carcass in the yard, crazy dog. Got to mom and dad's around 6pm on Sunday night and got to see my babies (at least 3 of them) So with the great weather and all of that it was a beautiful day.

I have been having some aches and shooting pains of my back and upper arms for the last week and dizziness. (Rob says I've had that for a long time.) I am not sure what that is from but we are working on it. I saw Dr. Allphin today, he said my tube is still in place, he then stuck that long camera up my nose and into the back of my sinuses and throat ( he made me sing) and said he thought everything looked good. There is still a lot of raw areas with scabs back there and thickening which looks like scar tissue. He then reviewed the MRI's and said about the same thing, there were a few places he was interested in what the Radiologist had to say about, but he really felt it was all scar or normal variables. So I called the MRI center to see if I could get the MRI, which they would not fax I had to pick up or have it mailed to me. (thanks federal government.) So we are waiting for that to be mailed to really get a final reading. But he was so pleased I do not have to go back to him for 3 Months. I am actually interested in the report myself, hard to trust those radiologists though.

It is an amazingly beautiful day and so far Great news. We had a wonderful drive home and then spent the rest of the day at work trying to clean off my desk. Then home to ice my back and rest up for tomorrow.


Please-go out and enjoy some of this weather!