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New to this site- Hello and my story

3milie's picture
3milie
Posts: 6
Joined: Jul 2012

Hello everyone,
I was diagnosed with Hodgkins Lymphoma back in April of this year 2012. I am a single 30year woman who lives in Austin, texas Back pain, 103.5 fever took me to the emergency room. I had a kidney infection. At least that's what the er doctor told me. I knew something was not right. I had never had a kidney infection and I could still feel heat radiating from my right side. He felt comfortable sending me home after 3 liters of fluids and IV antibiotics. My temp was down to 102.7. I told him I was not leaving without an ultrasound or CT scan. He laughed and said those tests would be unnecessary. A few minuets later the nurse came in to discharge me. I looked at her and said again I am not leaving without a ct scan or ultrasound. She left the room, not happy.

Finally a nurse came in and wheeled me into the CT room. After the CT scan and still on the table, I heard them call for the radiologist stat.Then the doctor came back in and said that I had 2 stones blocking my ureter and 4 other stones in my kidney. He said they called an ambulance because the hospital I was at did not have a urologist. The ambulance came to pick me up quick. I arrived at one of the major hospitals here in Austin. I was wheeled into my room by the paramedics. I knew this was serious, and I would require emergency surgery to unblock my ureter. I called my boyfriend, sisters and then was taken to surgery.

When I was recovered and alert I was taken to my room where my sister was. I gave my key to her and told her to go stay at my place and take care of Ellie, my dog. That night I did not do well, I was tachycardic, with a resting heart rate of around 140bpm. My fever returned. My poor nurse thought I was in pain so she pumped me full of every pain med know to man I think. Finally around 4am, she said that if my heart rate did not go down in 10 minuets, she would call in the doctor. I could barely speak, I was so messed up on morphine. I knew I was hypovolemic. I needed more IV fluids and oxygen. The doc came in and did an ecg. Normal. He increased my fluids and put me on a nasal cannula. He actually listened to my chest as well. When he sat me up, I did this deep almost in my chakra cough. He asked how long it had been going on. I told him I had been to the other ER twice in the last 8 weeks for back pain and they had given me muscle relaxers. I had been sleeping a lot and thought stuff had been settling in my chest. I would cough when I woke up. But, once I got up and going the cough would go away. I asked him for a chest radio-graph, just to make sure I did not have walking pneumonia or something like that. They wheeled in the radiograph unit, and took my chest rad. With the increased fluids and oxygen my heart rate went down to 80bpm. I was asleep, finally.

My sister and nephews came to get me as I was going to be released from the hospital. I had a stint in my ureter, my kidney and stones were infected. So I would need another surgery later on to lazer the stones and remove the stint. I felt much better even only on a few hours of sleep. Again, the nurse came in and said that she would be back with my discharge papers. I asked her about that chest rad.?.? She looked at me kind of confused and said she would be back. When she did she said there was an emergency CT scan that had been ordered of my chest, but had been lost in shift change aka "the matrix." Awesome. Sooo... She called an orderly to take me down for yet again another CT scan. Again, I heard them call for the radiologist before I was off the table. Uh oh. Not good. Whats this about?

I go back up to my hospital room and then the phone rings... My nephews and I were looking for it everywhere. I pick up the phone and on the other end is my urologist. He tells me that I most likely have cancer and they will be running more tests, I am not leaving the hospital. He tells me that my oncologist will be in touch that same day.

I am thinking what, cancer? Oncologist? Complete breakdown. My sister looks at my not understanding a word because I am crying so hard. I had no idea what I was in for, but I knew it was not good. I lost my mother to cancer at 18yrs old.

I was in the hospital for 2 weeks. Bone marrow aspirate, lymph node biopsy above my collar bone, midline IV catheter placed, tons of blood work and then my power port was placed and I was moved to the oncology floor. It was then that my oncologist told me that, yes I do have hodgkins lymphoma stage 4. It was in my mediastinum, collar bone areas, arm pits and lower neck. I asked if I would loose my hair? yes Would I be able to have children? No most likely not. I had my first round of ABVD chemo in the hospital.

I have had ABVD chem twice monthly since then. I had another CT scan a few weeks ago showing good progress.

Lungs- Improved, Stable 2-3mm sub-pleural opacities in the right lung, likely post inflammatory
Mediastinum- heart and vessels within norma limits Left chest port with tip at the cavatrial junction
Lymph Nodes- Interval decrease in size and number of discrete confluent lymphadenopathy in bilateral posterior cervical spaces, superclavical, mediastinal and left subpectoral/ axillary regions
Left Axillary 8x7mm, previously 15x14mm
Left prevascular 29x16mm , previously 36x26mm
Right prevascular 27x12mm, previously 42x23mm
No pleural effusion, mass or pneumothorax is noted

So, here I am 4 months later. I am lucky that everything worked out the way it did. So fast. But it's not over. I have become increasingly more depressed. My boyfriend is very supportive, I am lucky to have him. I cry almost every day. I want this to be over.

There you have it my story so far, well the short hand of course.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Milie,
Damn they put you thru the mill. First of all welcome to the site. You will find all kinds of support here. Next,remember there are all kinds of treatment for Lymphoma. One doesn't work there is always another one. Then stay off those websites. They are outdated mostly and will scare you to death. They deal in statistics. We are not stats we are people and each of us are individuals.I have a different type than you. Mine is Follicular and I am currently in remission and hope to stay that way. I was treated with R-CVP. It is not an easy road ,but you will get thru it. Others will chime in as the days go on. Try to be strong as hard as it may be. I know this is short ,but I am not that good with words sometimes.John

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Stage 4 Hodgkins Lymphoma here ... Let me know if you have questions. They might try to push Stem Cell Transplant from the years of my experience

Aaron's picture
Aaron
Posts: 237
Joined: Jun 2012

MIllie, what an ordeal! It's good to hear your onthe mend. I'm new to this whole lymphoma thing myself (NLPHL 3a) I get my port tomorrow and start my abvd on Friday. I hope you continue to feel better both physicaly and emotionally. I can sure sympathize, I'm a 45 yr old man and I lose it from time to time myself. I believe it will get better for you and me and all of us fighting the lymphoma fight. Btw I can personally attest to the fact that John is seldom at a loss for words and can use them quite well when he feels inclined ;). Aaron

3milie's picture
3milie
Posts: 6
Joined: Jul 2012

I do have questions.
Unfortunately, I have been in the medical field for over 11 years, thus I can read my blood work as soon as it's off the press. I have had slightly low hct% or been anemic. Why would they want to give me stem cells? I have asked about radiation, which was swiftly down played, and said most likely no need for. But, I feel like I am taking crazy pills. I want this port out of my chest. I feel locked to the medical system, and I want out as fast as possible.

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

After reading on many boards I read the same things . Anemic, mass in media stynum, no radiation then stem cell transplant. Let's see if you get the same speal. Like u said its like they are locking us in

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1045
Joined: May 2012

3Milli,

You have one of those rare medical histories that is worse than mine. I will not go through all of that here, but will just say that if the abvd gets you to total remission, I would be very surprised if anyone suggests SCT -- it just is another million dollars, for no medical reason. Also, in late stage HL, radiation is not usually given with abvd, which can be a good thing, since it lessens the liklihood of recurrence years later, or morphing into leukemia also years later. Radiation mostly is focued on small areas, for a precision strike. In stage 3 or 4, you have problems everywhere, and need systemic medicine. Using radiation in stage 4 would be like trying to fight a war with a revolver.

I did not notice: Do you get rituxan with your infusions ? Rituxan is very effective against B-cell lymphoma, but not used against T-cell variants (actually, it kills the C-20 cells "riding" on the B-cells, but I digress).

The port is a blessing for your small veins. Adrimycine and vinblastine are blister agents, and can tear up arm veins. (Chemo overall was developed from mustard gas following WW II, you know.) Do not have them yank the port until this is over is my recommendation.

Also, abvd can have some nasty long term side effects. Most people do not get these, but when they do, it is the "gift that keeps on giving."

I did 12 infusions of r-abvd, and can answer most lay questions regarding any side-effects that you might happen to sense. I hope that you avoid these, like most people are fortunate enough to do. What I esperience was lung toxicity (bleomycine), fairly severe neuropathy(vinblastine), total loss of taste (adrimycin), and massive fatigue, which is still with me today, three years out.

But, I bless being free of cancer.

I took my state motto as my cancer-fight motto: "While I breath, I hope."

Continue in your hope,

max

3milie's picture
3milie
Posts: 6
Joined: Jul 2012

yeah, I have a new saying
DON'T GOOGLE ANYTHING

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Milie and "Welcome"....
I'm bowled over with how many new folks are joining the group...hope it isn't a sign of the times! I hear ya about feeling tied to the medical system, and I'm afraid that feeling isn't going to end anytime soon for most of us. I have a different cancer than you..Follicular NHL-stage3-grade2-typeA and I'm much older..age 61. My chemo was CVP-R, which is a milder chemo than what you are getting. I wish you well with your treatments and hope you continue to stay with the group for support. Best wishes...Sue

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

So sorry to read of your ordeal. I just wanted to add that I am a 23 survivor of Hodgkins Lymphoma. I was treated with RADS and ABVD. I don't know if anything has changed but I had a daughter after the radiation treatments and another daughter after ABVD. From what I understand, the ABVD doesn't interfere as much with fertility as the MOPP regimine. You had so much thrown at you at once but maybe you can re-ask the children question again. In the meantime, take care of yourself, soon you will be on the back side of treatments.
Cathy

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Welcome 3milie,

From your writing, I suspected you had more than a cursory knowledge of
medical terminology ;) and you write well. I felt like I was watching your
crazy journey unfold before my eyes. Sorry you have to be here but as you've seen,
there are wonderfully caring and supportive folks here.

I'm glad your results are showing good progress. Lymphoma is very treatable and as
you will see from folks here, there's plenty of hope!

Regarding depression/anxiety, if you are not already taking something you might
want to discuss with your doctors. I can tell you ativan really took the
edge off for me for anxiety and helped me sleep better.

You are well into your cancer journey and soon you'll be on the other side of
treatment and recovery. I know you look forward to that. Please keep us updated
and know you are not alone in this.

Below is an article I posted recently that most have found helpful.

The Things I Wish I Were Told When I Was Diagnosed With Cancer

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi 3Milie,
Just wanted to welcome you to the group. My dx is different than yours, mine is Splenic Marginal Zone NHL. Having Cancer is really hard for some people (including me) it can cause depression. I had to go and see a counselor because the first couple of months after my dx I just couldn't stop crying. I have another illness and when I found out that I had cancer too, I really thought (this is it), I'm not gonna make it out of this one. I'm not out of the woods yet but I think I'm doing better with it. Look for a counselor where you can talk about the fear that you're feeling and talking to people here at this site can help out a lot. Only people that have/had cancer can really truly understand what you're feeling and going through. Hang in there and I wish you only the best in this journey.

Sincerely,
Liz

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Being depressed is so the norm, everytime I'm scheduled for my PET scans, I stress out. I still have activity in hip bone, so I always think the worst. All I can say is the only thing cancer can't take from you is your attitude. I try hard to live everyday! It will be over faster then you think..... Vinny

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