Tag Archives: Follicular Lymphoma
Great article for Patients and Caregivers on stressors and how to continue to find little ways to show intimacy to each other. Whether it’s holding hands, back rubs, eye contact, talking, etc…
i just had a couple more biopsy’s right before Valentine’s Day so things have been out of sorts at home. I’ve been uncomfortable, in pain and exhausted. My partner and my son both got stomach bugs shortly after I got home so they were pretty out of it but still very glad to see me.
after 4 years of really being sick and not a normal member of society, I do realize how hard this is on anyone who is with me on a daily basis. The love it must take and the fear to stick together is pretty tremendous at this point. And how it has effected my son deeply saddens me. He is almost 4 yrs old – it is all he has known. That is very sad to me! Today he was furious at me because he wanted me to get up and play Star Wars with him. One of many imaginary games with stuffed animals and I just couldn’t move. He slapped me. Oh intimacy! Definitely loads of emotions. I didn’t react. He was bummed and wanted his mommy to play with him. He had been gone all day and figured that I would have slept and been fine by the time he got home.
He settled down and cuddled up with me and I put on a movie for him and he started to play with my hair and pout his cheek right close to mine and kissed me on the lips and then help both my cheeks in his small hands, looked me in the Eyes and asked if he told me that he loved me today. I told him that now he had and we gave each other big hugs.
love him so so much!
Claudia is my partner. She has been terrified through all of this. And if the shoes were switched, so would I be. I would be desperate about the thought of being left alone with a young son and all of our animals. All I can tell her on a regular basis is I’m not going anywhere and I’m not! I love you Claudia! We are in our tenth year together. Happy Valentine’s! My Sweet sweet Woman! You are mine and I am yours forever! <3 Wendy Tarlow
Just got into PR and am excited to say that I will be seeing my dear friend Elvia in a couple of days. I would like to see her right now. I think we are about 35 mins from her. My head is pounding already. I flew on a private plane which is something that always feels like a once in a life time offer and is almost stress free but the altitude pressure is much worse. I always speak to the captains when I fly on a private plane because they can control the cabin pressure for me to some extent.
spine is on fire. when i was younger i would have told you that my kundalini was rising, nowadays it is meningitis..
My mind is ablaze with thoughts of cancer and what would have happened to me if i didn’t do the treatment that i chose. But that really wasn’t an option. The last few months I have been either sick with virus which have led to meningitis again or I have been awake with thoughts and then sleeping on the flip side a ton. I don’t really recognize much about myself anymore except my brain and my thoughts and once in while I recognize my energy surge, like riding in the cadillac
tonight with the top down on the way back from Sunset Beach after a nice dinner with my Dad and family, listening to Goyte and recording Logan rocking out. I felt like my old self. I just can’t look at my self in the video because I don’t know that person. How do I come to embrace who I am now? So hard on myself, after what I have just been through the last three years. I need to gain some sense of kindness and love so I can heal and stop judging my external self so much. I have made it through the hardest part I hope.
I would like to heal all over and get truly healthy again but ultimately I just want to be here for my Logan, my son and the rest of my family.
When do I soften to myself? I have softened so much to the rest of the world. isn’t there a time that I can give myself a break as well. The sleeping that I have been doing just the last few days is finally feeling like what I have needed for awhile. I imagine that if i can do some more of that, that i will find some stamina again. that this virus will leave my spine again and neurological system.
these words were keeping me awake. Time to sleep now, Wendy girl! Good night!
God I want my life back. My body. To be a warrior again. My mindis so broken from these last 2.5 years. Logan was only three months old. Why? What do you want from me God? Imam a warrior. I’ve always been a fighter. I’ve learned to be vulnerable and to allow some people in through this but not that much. I’m still angry. I want to rip out of this trench of shit that I have landed in. Toxic wasteland of radiation and chemicals and hormones. I want to run again. I want to feel my body strike again. Kick. Get these dark thoughtsnoutnof my psyche! I understand why Claudia is so lost. She’s alone with this too. We both are. Fighting the same battles but with a sheath of plexiglass separating us. God, I love her. Her pain makes me so angry at myself and the world that this happened. Give us back our life together with our son. She’s becoming this incredible athlete. A great surfer. I’m so proud of what she’s accomplished in her life so far but she has no idea. And me, I have learned to be a real Mom. I love Logan so much there is no fucking way that this illness will get me but I have to get out of this muck. I need to feel how angry I am. I am training again whether my body lets me or not. I’m ready for a real trainer. A master. Not some stupid CPT that thinks they know more than me. I want to be an athlete again. To shed this layer of sloth that has entered my veins. I feel the adrenaline pumping now. Can’t even doing a fucking headstand anymore. My shoulders felt like they would snap. I need Me to come back and train me. The young me. I understood what was in the way of my clients. The drudgery of daily life. Fatigue. Morose. The slow down of the older body. But I never worked with someone who had cancer before. I don’t understand it any better than if I was looking at someone else who was trying to escape it. Trying to shake their body out of the chemical nightmare that chemo lays on your body. I know you need a strong mind. And small steps. Weights. But there is a whole mental component that is a real battle once death has become a reality. Like you have to get in your mind and beat those death thoughts out. Have I started? Is something happening here. Or do I wake with a fever tomorrow. I think you have to fight the fever. Start sparring it like I would have in the past. Someone has to win here. Either me or it’s going to have to take me. I don’t want my son to grow up with this. Two of us that love so much but were so heartbroken by this. Cancer walking into our dreams of our own real family together and thinking it could take me away. Well, I’m not fucking going. I love this life. I have fought and fought and fought to live my life and to earn a good live. To live. To love and I’m not stopping unless you strike me down dead. Right now, I think I might even rise up out of that you asshole. I earned this. I love my family and you aren’t going to take them away from me!
I’m having a hard time breathing. Not horrible but winded worse than last night. I might put myself in the hospital tomorrow. They need to do some chest X-rays. Should have asked them to do a full CAT. Some of my lungs showed in the abdomen so they might know something from that. I’m freaking a bit. Not sure what would be next if this is back. It is the worst part waiting for the results. Ur head can so fuck u up
I just wrote a whole post and lost it on the new blogger dashboard. FUCK! I am a little sick. Have a fever and very fatigued again. I was doing great! Fever was down to 99.5 on a reg. basis but now is up to 100.7+. Today Logan was sick. He’s fighting croup and I must’ve picked up something. But the fear is there. Why am I bruising so much when my rbc isn’t so abnormal. Low but not horrific. Platelets are fine unless something has changed in last two weeks. Last full blood test my cholesterol was high. Three months ago it was fine. Makes me think something inflammatory is going on.
I just started a month long vitamin regimen through Doctor Weil which seems conservative enough to not set my body into an out of control spiral. Mainly immune support plus some liver and lung cleansing. Some largely studied herbs that seem to have some strong anti cancer properties.
I feel down and blue today which I am not usually aware of feeling. I hope that I am not getting depressed. Is the fever a trigger or is depression causing the fever?
I went to my dentist, primary doctor, oncologist, asked my neurologist, infectious disease doc, hospitialist, and endocrinologist. No one had an answer except it happens to people with weakened immune systems and sometimes people who have been on chemo or on lots of medicine but no solution. I had that white shit in my mouth like extra mucous that would build up which is fucking gross. I’ve always seen drug addicts with it. I tried everything. Dry mouth rinses. Nada!
I kept doing searches. It wasn’t thrush. I had that a lot right after chemo and I even experiment with diflucan and different thrush medicines to see if it would go away.
I did another search last week and kept changing the keywords around and put something like shedding mucosa membranes of mouth lining and globs or stringy white stuff (lovely) and I found what I was looking for. Fucking stupid dentists don’t know this!? Sensodyne extra Whitening toothpaste and other extra whitening or baking soda and peroxide is known to cause this in immunocompromised patients especially chemo patients. Switch to sensodyne pro enamel or original or organic toothpaste. Switched to a toothpaste called Organique (which is really good, so much better than yucky Toms) and problem was gone in ONE FUCKING DAY! UNBELIEVABLE!
I am filled with a sense of violent betrayal that fills my belly with a guttural scream. My spelling may be atrocious and I apologise right here and now. Even spell check may not fix it all. I was diagnosed with Meningitis and Encephalitis a few weeks ago and have some damage to the left hemisphere of my brain right now from swelling that may or may not clear up. They don’t know right now. What I do know is this Fucking sucks! I had my Bexxar (chemo) treatment in February. My lymph nodes are still way down in size so it did do the trick for now. Hopefully it stays that way. I truly hope that this is the worst of it because I can’t handle much more. This was the third time I was in the hospital.
I’m not going to write a bunch of shit for those of you that need to hear the fluffy stuff. the look on the bright side of shit. The be thankful for what you have crap. that is not how I deal. I walk through the sludge. I punch through the muck. I have been letting out guttural yells since the first fucked up thing happened to me when I was five years old and I will continue to deal with my emotions in my raw and real way until I die. If you don’t like it. Don’t read it. Don’t talk to me about and save your Pollyanna shit for someone who wants to hear it. If it works for you then fantastic! I am very happy for you. I would be dead by now if that was how I processed my inner turmoil.
My misery is tangible. The anger has always been bottled up tears that I have been too scared to let spill out. Once I take enough breaths and realize that it is stronger to cry and healthier to cry than to hold it in I eventually let it out and I feel better, look better and all is well for a bit.
but right now I am in physical pain and physical pain on top of emotional pain is just unbearable for me. that is what pulls me down lower than I seem to be able to handle. I need soothing when I get like this. Pain killers don’t do it. I haven’t drank in months and don’t want to anymore which I am proud of. Certainly not anything I need in my life anymore. Too much crap in my system from drugs for dealing with one symptom of cancer or another to one symptom of chemo or another.
Am I dying? Is this what this is? Or am I becoming cured?
Veins are collapsing! each day we burn through a few. Thank God or Alberta! I search for her. ‘You guys are not putting another line in without Alberta!, Does Alberta know? Omg! Does Alberta know that another one is collapsing?’
What is that bubble? MY arm is freezing. Feels like it is filled with ice.
My head is filled with thoughts circling out of controls. good. bad. indifferent. I have been in the hospital for just a little over a week now.
Got my Dad to got out and get me a mini PC. Saved me from the darkness that was filling my mind at night. I am too weak to stay up at night writing or reading but torture myself I have just about the right amount of energy for and the computer is perfect
I’m done! I went paddle boarding today while Claudia ran with Logan and our dog Ali on at Long Beach. I was out there alone and it felt great. I felt like I did when I was training for a century ride many years ago which was making me very angry. Starting over. Rebuilding a body that had been an athletic one and is now overweight and out of balance.
Last year when Logan was born was the happiest moment in my life. Claudia and I both were ecstatic when he was about 3 months old and he we were living in our dream town. Surrounded by water, family, a beautiful baby and we were happy together. We had arrived.
Then came July! My Mom was visiting and I showed her the lump that had not gone away since the previous November when they thought I had shingles and an enlarged lymph node related to that. I knew showing her was acknowledging the fact that I needed to go get it biopsied and that I was going to have cancer. I Knew. I had had symtoms already for a few years. I had already had other lymph nodes removed that were atypical and not diagnostic but left me as someone that the oncologists were watching. FUCK! No Why me! Just this sucks!
And it has sucked. The whole last year has been brutal. If Logan wasn’t here to make me laugh everyday I think that I would be in deep trouble.
Today I had so many thoughts when I was paddle boarding; I need to get a water proof voice recorder. I don’t remember any of the thoughts at this point. Chemo brain. Either way I decided that I couldn’t have cancer anymore.
And here I type. And i’m dizzy. And I want to be left alone today. but it is sunday and there is no chance of that happening. but it is all emotion and I just need to cry and let it out but i don’t do that well either. and i’m going to post this on facebook because i’ve decided that people who knwo me should know what i’m thinking and feeling.
I need to heal. To fight. To find some kind of discipline in my life again. Something to believe in again. I will Beat the Crap out of this Lymphoma. I have beat the crap out of everything that has stood in my way my whole life.