I've missed following everyone's progress... and I'm scared :-)

[ColleenRae]

Hello,

I have not been able to follow the forum consistently for some time.  Things have definitely been taking a toll in the last couple of months.  I truly miss hearing how so many of you are doing. This has really been my only social outlet since being diagnosed and treated for lung cancer in 2018, and especially since the advent of COVID.  I've been wanting to attend a zoom meeting, but there has always been a conflict on Fridays it seems for weeks now. Hoping the addition of new days during the week will allow me to attend.

I just need to check in here. I don't even know if what I have going on is in any way related to cancer, but need to share somewhere.  In early September, my son (he's 22, on the Autism spectrum, lives with me) just lost it. His community college was starting up again - his final year - and he was really down about having to attend classes online. He is set to graduate this coming spring, so it's been quite a let down. A number of things were piling up for him and he just lost it and returned to behavior that is common for those on the spectrum, but something he has not engaged in for years - self-harm. To make a long story short, he split his head open and I had to call an ambulance. Head wounds are not pretty. There was blood everywhere. I was shocked he had hurt himself and tried to stop the bleeding until the EMT's arrived. They took him to the ER and I followed by car. I did not have time to think about exposure to COVID until later. We spent about 6 hrs in the ER. They were able to repair the wound, no concussion found. Thankfully he was okay. He was very shook up himself. There are a lot of things (not the place to get into here) that have been building up for him - one of which is my advancing age and history of cancer. He had been on a wait list for therapist for a few months in our area. I called her as soon as we got home and explained the urgency of his needed support. Fortunately, she responded and he has been meeting with her weekly since September. (Unfortunately, his insurance won't cover her...so we're paying out of pocket, but it's worth every penny!).

About 3 days after we had been in the ER for my son, I started feeling sick. My joints ached, I had a headache and was running a low fever. My initial thought was, great, I contracted COVID while at the ER. Then I woke up one morning and my entire left breast was inflamed. I could feel a couple of lumps. I have never experienced this, so I was truly frightened. I called my PCP and they would not see me due to the fever. But, it took me 3 days to even get a response from them re: this. They made the referral for the COVID test (my first) 3 days later. Fortunately, it was negative. That was a relief. Then I had to wait an additional 4 days before I could see my PCP. By that time the inflammation was subsiding. They told me to take Tylenol to help. I was then referred to imaging and had three different tests (mammogram, 2D imaging and ultrasound). I was terrified this could be inflammatory breast cancer; it had all the markers, but imaging said no. They believe it's due to calcification in the breast. They advised I do a repeat mammo and u/s in 5 months. The problem resolved itself, but I am still scared.

At the same time, I discovered some small lumps in the arch of my foot... Dx'd as Plantar fibromatosis. Benign nodules. This is a progressive disease. The foot Dr. said it's likely genetic. I've never heard of anyone in my family having it. He also said it can be disabling and affect quality of life. He offered steroid shots. They aren't that painful, yet, so I declined and thought I'd do some research. I did find that that there is evidence that radiation will help treat these nodules. I need to look into this more. But, by this time, I was really feeling like I was falling apart. I love to walk. It's been affected due to COVID and if I have a painful, progressive foot illness, I will have a very hard time adjusting to that.

Being me, I keep wondering if any of these issues are related to lung cancer. I was afraid it had metastasized.

Then, about 12 days ago, I was assembling new file cabinets for my new work at home office space. I found my joints were incredibly sore and I could hardly get up off the floor. I was running a low grade fever as well. A week ago last Thursday, I could not sleep at all that night. I was chilled and running a fever in bed, with a terrible lower backache.  I got up the next morning and knew I had to see someone. My son was very worried and felt helpless as he does not drive. I called my PCP - 3 x before I was able to speak with anyone. They would not see me due to the fever and advised I go to an urgent care clinic or the ER. I decided to call 911 and made my first trip in an ambulance. The EMT's did not think I was sick enough to be taken by ambulance but I assured them I could not drive myself safely. They told me to insist that the ER give me a COVID test - apparently that is not standard procedure here! I was sure I had COVID...

I spent 8 hours in the ER. I was shaking with fever. I was put on an IV with saline. I was given a chest x-ray and a cat scan. Blood tests. Some not-helpful nurse with a British accent kept coming in and saying "You are seriously ill. You have the rigors!" It was downright creepy. The N.P. who was attending me kept saying "You are really sick. I hate to say it, but you don't look too good". None of which was re-assuring. I finally said "Well since you've all come to the conclusion I'm seriously sick, could someone please tell me what the **** is wrong with me?"  I was then told they thought it could be a bladder infection, then it was diverticulitis, then I was even told "interstitial lung disease"... then this N.P. said "If you had waited 24 more hours I don't think you would have made it". Wow. I felt like I was in a bad dream.

I was admitted to the hospital around 11 pm Friday night. I don't remember much about that night. I was not in the ICU. I was shaking and so cold. They packed me in ice to bring my fever down. On Saturday a.m. a N.P. came in to tell me they believed I was having an attack of diverticulitis. They reviewed my diet (I'm vegetarian) and said it was likely not my diet but due to stress. They weren't sure at that point if I would need surgery. Imagine that.  They were treating me with IV antibiotics and would not allow me to eat anything. My fever broke Sat. night. They decided to release me Sunday a.m. as a result. I was told to stick to a liquid diet for a few days and then start on a low fiber diet (which made no sense to me as fiber is encouraged to prevent diverticulitis...).

So, I went home. As my son could not drive to get me, I had to take a cab from the ER to the pharmacy (and they did not have enough of the antibiotics I needed!) and then to my home ($60!). The next day, Monday, I called my PCP as the hospital told me to make sure I saw her in 2 days and to have her run more blood tests. I could not get a return call; only leave messages. On Tuesday my fever was still present, albeit low. I tried to reach my PCP. I tried to reach a Gastro specialist to address the dx of diverticulitis (but they couldn't see me until Nov. 3rd). I was really feeling alone in this journey. I even called my surgeon in Seattle and and a nurse said they weren't concerned about my dx... I didn't know who to reach out to other than the ER again. So, I got another cab and off I went. The ER Dr. ordered new labs and discovered my liver is now severely elevated. A new lab - from blood work while I was in the hospital - also came back with results that I had a superbug infection: Pseudomonas Aeruginosa. I had not heard of this before, but apparently it's common and one of those bugs that is resistant to antibiotics. I am allergic to penicillin, so this is a challenge. The ER Dr. changed one of my antibiotics - thinking that was causing my liver enzymes to elevate. He discharged me and told me to contact my PCP again to run more blood work this week.  That was on Tuesday. It took until Friday for my PCP to place the order. I went for a blood draw last Friday and got the results... my liver is elevated even more. My PCP's office said she is still too busy to see me, but they are "squeezing" me in to see a nurse tomorrow (Tues, 10/27) morning. I have lost approximately 10 lbs. I am frightened and can't seem to find decent healthcare anywhere here. We are so close to Seattle, where I could likely access better care, but I am too weak to drive there and my insurance won't cover transportation if I can access the same care here (regardless of whether I can really get in to see anyone!).

So... I don't know if any of this is related to cancer or if my cancer has metastasized. I thought I was fairly healthy, but this has completely blown things apart for me. I keep thinking there must be some connection between the inflammation, fevers, etc. and cancer.

Again, I'm sorry if this is long and doesn't even apply to this forum. I'm just scared. I hate COVID and the limitations it has set on us. I have been so careful since February. I hate going back and forth to the ER, Dr.'s office, etc. (by the way, the nurses were great at the hospital but that place was filthy...no one cleaning anything!). I am worried about my son. I thought cancer would kill me and now I'm afraid of COVID and a superbug that has rendered me immune-compromised. Please keep me / my son in your prayers... We could really use them.

This took me "forever" to write. I will try to check in on the rest of you... I am too tired to scan all the postings to see how folks are doing. Please know you are always in my thoughts and prayers to the Universe!

Colleen

 

[BridgetO]

Wow, Colleen, you have really been through a lot! And that's an understatment!  Sounds like your PCP isn't being helpful. Is there an option to change to another one? Or is there an urgent care clinic near you? Do you have an oncologist/  Lots of questions, I know, and you've probably thought through most of them.

Another question; (oh dear, I'm full of them). Is your son getting any services related to his disability?The reason I ask is that I used to be a case manager in an Oregon Deveiopmental Disabilties office and I know that in Oregon, being on the spectrum usually qualifies a person for services. At the time I left the office, they were more and more moving to self-directed services, meaning the person could choose from a wide array ot things, including counseling or related supports.

I'm really sorry to hear that you and your son are having a hard time. I wish there was something I could do to support you other than ask a bunch of questions. Let me know if there is anything we on the forums can do. 

Hang in there, Colleen and keep postng, even one sentence to say how you're doing.

Bridget

[LouT]

Colleen,

I'm so sorry to hear what you are going through and I can't understand the medical care you are (or are not) getting, but it does seem like you need a specialist that can treat you more deeply than they can at the ER.  Do you have anyone who could take you to Seattle, if not would Medicare pay for rides (I know some Medicare Advantage Plans offer rides to and from doctors and treatments).  I would not venture an opinion on what is causing this but you do need to get to a doctor that can review the records of the ER, conduct tests that are needed and then discuss your diagnosis and treatment program with you.  From what you are saying; it appears that the ER doctors are generally focused on the immediate treatment of emergencies and may not have the wherewith-all to really provide you with a deeper diagnosis and treatment plan.  Do whatever is necessary to get to a doctor that can really do a deep dive into your case. 

Please let us know how this works out for you.

Lou 

[SamGirl50]

You and your son are in my prayers!

[Tom Galli]

Colleen,

I wish I had a clue, a notion, of advice I could give or assistance I could render. 

It was painful reading about all your difficulties, particularly getting to see your PCP. That was most disconcerting. I’ll include you in my prayers.

Stay the course. 

Tom

[Judy M2]

I'm so sorry for all you've been through, and you certainly do have enough stress going on. I hope you are able to get proper health care in a convenient setting. 

As to diverticulitis, a low fiber diet is prescribed until the infection is resolved, then you go back to high fiber. (My husband was hospitalized for it a couple years ago and needed IV antibiotics.) But apparently that isn't actually what you had. 

I hope things start to break your way and soon! 

[TJM]

My lord Colleen Rae.  What an ordeal.

To make you feel a little less alone, I can relate to the idea of blaming everything on the cancer.  I too have experienced symptoms out of the blue.

Last week, after a nice stay in Seaside I started to feel like crap. I was much more short of breath than normal, fatigued, my feet swelled up and I got a pounding headache (not a cluster headache thank you), and a persistent cough and have spent all week doing nothing.

Feeling better today so hoping whatever "it" is, it's almost over.  I don't even bother my "Team". Got an echocardiogram that only got good images of the left side (but said I was good) and an endoscopy that revealed scarring and an ulcer (imagine that).  No real follow up coming other than scans. I'm a bit concerned that my right foot is bruised. No clue why but I'll watch it.

So post treatment I am now anemic, blood pressure erratic, resting heart rate 20 BPM faster and wearing compression stockings.

Do I think all are related to cancer/treatment? Yes I do. It occured to me that my expectations of "recovery" may be too high. I was expecting to feel pre cancer good, if not a bit better.

But still alive and fighting. Just like you are. You are in my thoughts.

Peace

Tom

[JamesB]

Colleen,

I am so sorry to read about what you have been going through.I can't even imagine. You and your son are in my prayers and here's hoping that you soon get the help that you need.

James

[LexieCat]

Wow, Colleen,

I'm so sorry you've had so much on your plate. I hope you'll stick closer to us--it really does help to share what's going on with other people. 

You've gotten some great suggestions--especially from Bridget, re your son. I know zero about diverticulitis or the infection you might have, so I don't have much to add. 

I know it's easy to attribute everything to the cancer (and it's important to keep your oncologist in the loop in case anything is something to be concerned about) but other stuff still happens. Plus we are getting to the age where even more "stuff" happens than it used to. As my dad used to say, "Getting old ain't for sissies." Most of my aches and pains have been self-inflicted (falling off bed and breaking collarbone; shooting myself in the eye with a jewelry pin), but my cancer treatment sure doesn't help when I'm dealing with everything at once. 

Keeping my fingers crossed that you get your good health back on track. Keep the faith!

Sending a hug (to the best of my ability with my bad arm in a sling).

[LUNGevityKristin]

I'm so sorry to hear of all of this that has been going on.  The Lung Cancer HELPLine might be able to help you navigate finding better care.  I understand this might not be lung cancer related, but it is staffed by nurse navigators who can, hopefully, figure out how to get you the help you need.  https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

Please keep us updated on how you are doing.  Big hugs.