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!
