When we met in 2000 Paulina had one enlarged lymph node in her right groin area. But it went away quickly. It basically shrank to a very small size but I guess we had no indications that it is a cancer. It could be one but no biopsy showed it exactly. It was too early to get deeper on it, maybe we should have, but everyone has larger lymphnodes sometimes - from exhaustion, antibiotics, allergies etc - so we never worried.
We got engaged in the Summer of 2001.
Winter 2002 - All of the sudden the swelling of lymph nodes came back but then it got much larger and much more painful. After biopsy we found out that it was the t-cell lymphoma. Bone marrow biopsy was negative. Interesting thing to mention this only happened in the winter season!? Also her lower back pain was present (most likely some other enlarged nodes were pressing on her spine) and she could not sit anymore and had to take pain killers just to sit still. We decided on chemo right away, had no idea of anything about cancer or how to treat it, we were too young to doubt anything...like little kids who believe anything. Chemo, the very basic one (CHOP) 5 cycles, took about 6 months of healing. Obviously it came with all the side-effects like hair loss, nausea, nose bleeding, lack of energy...you name, it was there. Also we were told that it will be quite impossible to have a baby after that, a rather sad thing to hear for a young couple after they just met not a long time ago, got engaged and had the biggest plans in the world, btw. I wanted to have minimum 5 kids :)))
Paula has lost weight and was very shaky at moments. One event that we will remember forever is the World Youth Day where Pope John Paul II (Jan Pawel II - Karol Wojtyla) came to Toronto. We went there as Paula was sick and was on that chemo, we waited all night in the rain, we sang songs, prayed, it was a great night. It was windy and soo cold...but the spirits were like fire, hot and wanted more. In the morning where the rain poured like crazy our lovely Father John Paul II came and the sky opened up, all of the sudden and the sun started shining, the crazy wind stopped and it got so warm. A miracle has happened, for us it did, the sun shined on Paula and we knew that something amazing has happened. We knew she was healthy in this moment. The Pope came here to give her health. And he did indeed. The doctors test results next week showed that the cancer was "gone!" Well, I knew before that it was. Our lovely Pope, he is a saint. We love you and we miss you. Who will heal us now once you are gone?
Paulina was congratulated by the doctors and was promised that it is gone forever. She picked up all the pieces and we started a normal life, finally.
We got married in the summer of 2005.
Exactly 4 years later after her last chemo, boooooom, Paulina got pregnant! It was the most wonderful news to us, we never knew its possible but it happened. It was a miracle, I felt the Pope's blessings on this too. A little baby boy was born on the 1.2.2007 There was no questions that his name will be Karol, after the Pope who led us through such difficult time.
Many little swollen lymph nodes are present in the groin area.. The same pains as in 2002 in the lower back appeared, her entire left leg got swollen, is red, inflamed, hot and the top layer of skin is basically peeling off like after a heavy sunburn. She couldn't walk and her pains were unbearable. After receiving chemo two weeks ago (DHAP) the leg got smaller (there was 10 L of fluid in it) and the lymph nodes started shrinking. Now in the past week after first cycle of chemo the cancer is going wild, its spreading, it looks like its unaffected by the chemo. Now the same condition as on her leg before is happening under her left arm, her neck and there is pressure in her chest, tightness, and her breathing is painful sometimes. She feels pinching in her chest. The cancer is growing, well it got better in the leg, but it somehow traveled up to the chest area, neck and underarm. Crazy behaviour. She weights 48kg now. Doctors say its vicious, it got angry after the chemo. If we were to give her the same chemo again it will come back even stronger... she had a blood transfusion recently and her blood count got much better buy it declines slowly now again...
Paulina is doing a lot of research after finding out that a chemo called "mini-BEAM" will be given to her on Monday. Apparently its the best thing for her, she called a few doctors thanks to you guys who gave us some numbers and contacts to amazing people all over the world. THANK YOU! Btw. we made that oil with hot peppers, but its too strong for Paula, she cant drink that now, her skin is cracking on her hands, so imagine what such a potent spicy thing would do to her mouth. She is drinking NONI juice now, why not, it cures cancer they say, why not. I believe it.
To summarize it. She was supposed to get Salvage Chemo, 3-4 cycles of high-dose chemo (mind you, she just received one cycle now and the cancer is going mental), once much better, they would give her another chemo to extract her stem cells from bone marrow from her blood stream, then a very strong chemo which will put her immune system down to 0%, almost like a reboot or formatting her system - and then will give her stem cells back again and will rebuild her system from scratch with healthy cells. Salvage Chemotherapy sounds scary, the name alone is sickening to me, its like recycling a person... This whole process should take about 4-6 months. Now since Paula needs a different chemo this process might change a bit, but will see how and to what extent.
I know the Pope is gone from this World, he cant help us on a one-on-one basis anymore, we need and miss him so much, but I know he is with Paulina all the time, he is holding her hand and is giving her power to fight, because she needs to be here, Karolek needs her and I do too. But now we have YOU guys, our friends and family who motivate Paulina, who give her strength, who show her the reason to fight stronger, who show her that she is so important to you guys and that YOU CARE. Thank You so much.
We all need her, she is the most amazing girl, so soft, kind and intelligent...she will help others in the future, she knows the reason behind every sickness (she is in bioinformatics, dna, genetics) We learned so much in the past 2 months about health as never before, crazy amounts of amazing information. There is a cure for every sickness...but Paulina's is in such an advanced stage that its impossible to adopt naturopathic ways anymore, the cancer learned how to deal with them and is not accepting any "wise" food or raw vegetables anymore. This cancer is smart. I hope we are smarter... Thank You guys, She loves you all, and I do too.
I know only Love and Happiness heals all the wounds. Love and be Happy! - Eating healthy is ok too ;)
Konrad + Karolek
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8 Months Later
The last post I wrote was when Paula was getting ready for the salvage chemo and the bone marrow transplant. Believe it or not but the cancer steadily went away during this treatment, Paulina was gaining strength at a slow pace and the nodes were shrinking and the whole cancer started to disappear slowly but steadily. Like magic, we couldn't believe it taking into account that the first round of chemotherapy made the cancer mad and it spread even more. Another thing to mention is that the chemotherapy given to her was from the 1980ies, seriously vintage....old formula...the only one left to save Paulina. Where is the advancement in Cancer treatments do I ask? Where does all the billions of dollars of research money go? We have 2010 and the chemo was 30 years old! But I shouldn't judge because ....we were lucky again, God was with us all the time and Your prayers worked their magic too and it surely helped. We could feel that many people are with us there in this dark hospital room in the middle of the night and and I guess John Paul II was also always with us when Paula from the worst night in our life, where we didn't know if she will wake up in the morning, started to feel better and better, gain weight, get up and walk slowly again.
After weeks of serious battle we won the fight with cancer...that round was ours...Paulina was declared cancer free and off she went into the hot summer...lots of campings, relaxing, healthy foods, friends, rivers, lakes, boats...what a great summer it was! And most important she could be with her son all the time without feeling sick.
After such a difficult time in the winter I tell you life tastes much better, you enjoy it so much stronger, fuller, everything is clearer and also its so annoying to see other people not see the beauty of it, just rushing blindly from place to place, angry...exhausted, where? why? ...once I get more time I will get deeper on this.
Anyhow, its December now, few weeks before Christmas, I can hear Santa preparing all the present already on the North Pole. The news is that for the past 3 Months since our last Long Weekend Cottage outing Paulina started to develop a heavy cough. We thought it was a simple flu or some cold that everybody was going through recently...but her cough stayed until today. She coughs all the time with some breaks but its consistent. We have visited our "old doctors" from last year and they initially feared the worst and actually said that the "t-cell lymphoma is back". Once we got the news you must imagine our faces and how we devastated we felt again. We stayed in the Oncology room for the night broken down in tears again. The doctors saw swollen lymph nodes on Paulina's lungs this time. We insisted that it has to be from exhaustion from the cough, it can not be lymphoma, and after doing a few tests they agreed that it just might be some inflammation and most likely that it is a Pneumonia but werent too sure. If it was we would be very happy. After getting two rounds of Antibiotics against Pneumonia the cough started to be more productive (wet) but it never stopped.
Then the doctors did 3 CT scans, a few x-rays, bone marrow biopsy (the 4th one in the past few years!...for those who don't know what it is, its the worst thing a human can get, its basically drilling into your bone with a thick screwdriver to get inside the bone to collect bone marrow for testing. All this live, no pain relief, no sedation...horrible to watch, horrible to go through), bronchoscopy1 and 2, and some other countless blood tests....no diagnosis so far. Also, brochoscopy 2 went not as expected, as the doctor took the sample from the lungs there was a small hole in the lung and the air was escaping and created this air bubble outside of her lungs (lung collapse)...had to go to emergency for 2 days to get it "fixed".
Now, the list of possible simple sicknesses Paula could have is getting shorter by the day and at the end of it is Lymphoma. We are hoping we can catch something on that list before it reaches this last listing. What it also might be is the result of her last chemotherapy and the transplant, basically a side effect of it to which nobody wants to admit, but we read online that its common - serious lung complications. Its not like we would be mad or anything for this to happen, we had no choice last year anyways and we are so happy Paula made it and got healthy, so God bless whatever she went through, but we would like to know what she has...there are other hints but not what we want to hear.
Paulina weight is down again, she coughs, cant eat much, she throws up most foods, she is weak, has fever everyday for the past 2 months of 39C in th evening and at nights. She can hardly make few steps without a break, she cant sit or stand straight caused by her pain in lungs and chest in general from coughing constantly. Now imagine how she feels when Karolek our son (now 3.5) is around, She pretends its all ok, and she avoids showing him that she is in such a great pain physically and mentally. But she cant stop the cough and he knows already that she is sick somehow...tells me this quietly "poor mommy coughs all the time and has no strength" but I hope he doesn't know more.
Doctors tell us they will know more by the end of the week from Bronchoscopy2.
Will keep you posted.
Konrad
